Project Description

This special edition of the ALQ/Mujeres Adelante is looking at women’s rights and HIV. The various articles, contributions and comments are a reflection of existing and emerging ‘hot issues’, debates and dialogues, as well as of the ‘left out’ topics and continuing ‘invisibilities’ – as transpired at the recent 2008 International AIDS Conference in Mexico City. This edition raises many questions, including as to whether or not women’s rights and realities are adequately reflected in, and responded to, in the proceeding of international AIDS conferences; whether or not the realities and needs of local women are represented at the conference; whether or not ‘marginalised’ groups and topics are moving towards the mainstream, or are we remaining at the margin of research, debates and dialogues; whether or not human rights are indeed at the centre of global, regional and national responses to HIV and AIDS; and whether or not women’s realities and needs are ‘visible’, and women’s voices are ‘heard’.

Q
A I D S L E G A L N e t wo r k
Mujeres Adela n t e Daily newsletter on women’s rights and HIV – Mexico City 2008
Special
Edition
incorporating
Among ICW women, and
our friends and allies, the
main topics which provoked
the most controversy or
interest included sex work,
medical male circumcision,
criminalisation of HIV
transmission, the ICW litigation
project focusing on sterilisation
of HIV positive women, violence
against women, and how to
tackle the poverty so many
women live in. Many of these
areas were examined in the
Women’s Networking Zone
(WNZ) and The Positive Space
sessions, as well as during
events in the main conference.
What follows are reports and
deliberations on some of
these topics.
Criminalisation Will Harm, Not
Help – Hot Topic I1
Criminalisation was one of the
emerging hot topics that seemed to be
on everyone’s lips at the Mexico City
2008 AIDS Conference, and ICW was
among the leading voices on this
subject, through a consultation
during Living 2008, sessions
in the Global Village, satellites
and a poster presentation on
the issue. ICW also supported
Alice Welbourn’s presentation
on criminalisation in the main
conference. To reward us for our
hard work, our concerns were
echoed – in the final day’s plenary
session – by openly HIV positive
and gay South African judge
Edwin Cameron. Criminalisation
of HIV transmission is on the rise,
as countries either adopt laws,
which specifically criminalise the
transmission of HIV, or apply other
criminal laws to HIV transmission.
This trend has serious implications
for all people living with HIV,
and some particular concerns for
women and girls.
First, criminalisation increases
stigma against HIV positive people, and
is likely to discourage people from testing
and learning their HIV status. This then,
has an impact on people’s ability to access
treatment, care and support services, and
Hot topics in MexicoLuisa Orza
October 2008
ALQ incorporating Mujeres Adelante 2 Editorial and contents
1. Hot topics in Mexico
2. In this issue
4. Editorial…
7. Young woman’s voice heard for the first time…
9. Comment: We need to move beyond this…
10. ATHENA says Thank you!…
11. Understanding sexual pleasure and desire
12. HIV positive women in Mexico…
One woman’s voice
13. In my opinion… Broadening the notion of inclusion…
15. New publication…
15. Comment: A missed opportunity for us all…
16. To transmit or not to transmit
16. Comment: We need the ‘right’ women at the table
17. Resources must not be diverted…
Male circumcision and women’s rights
18. Comment: What would it look like to take women’s
lives into account?
19. Rights denials constitute violence…
HIV and gender-based violence
20. Motherhood without discrimination
21. Coerced sterilisation: The Chilean experience
21. Comment: Arresting drug users…
22. The diaphragm as harm reduction!!
23. Comment: Making free and autonomous decisions…
24. Reflections… Cutting through the hype… Take away
messages from Mexico City about male circumcision for HIV
prevention and the implications for women
28. ‘If you want something for women, say women…’
29. Reproductive health needs of women living with HIV
30. If only someone would listen… Personal reflections
32. Taking a stand…
33. Evaluating the Women’s Networking Zone…
Contribution to Women’s Empowerment and a
Global Movement in Women and AIDS…
38. Comment: The power of collaboration
38. Comment: Omitting the term ‘rights’…
39. In my opinion… Telling stories…
40. We need a voice!
41. Lesbian women are often ‘invisible’…
42. Pacific Islanders make waves
43. HIV and women who inject drugs…
44. Comment: Mothers can be heard…
45. Empowerment needs to go beyond HIV…
Women and HIV in Asia
46. Disabilities and HIV and AIDS –
How do human rights apply?
47. Women in the global HIV and AIDS arena…
An ongoing struggle for representation and participation
50. Invisibility and neglect
51. Comment: We started listening to the voices and realities…
52. Quite a profound retrenchment… Dashed hopes
for real change in the impact of HIV on women
53. The L Word and the G Word
56. The impact of criminalisation on women and girls
57. Conflicting rights… Reproduction in the social context
58. In my opinion… Every action counts!
60. Violence against women and HIV:
Women won’t wait!
62. Needs of HIV positive women for safe abortion care
63. A structure of subordination…
64. Women’s rights equal women’s lives…
64. Comment: Growing interest in work with men…
65. In my opinion… Emerging hot issues
67. Sex work is work and the workers are organised!
68. Who should decide…
68. Comment: To collectively be stronger…
69. Child survival and reproduction in social context
71. We are part of the solution: The voices of sex workers –
among session presenters and attendees – were heard
loud and clear
72. Lesbians lost in the debate on ‘gender’
73. Comment: We are all part of the same movement…
73. Comment: To meet women’s needs…
73. Comment: Violence against women…
74. Taking stock… Reflections on the Run
76. Give females control
ALQ Special Edition – October 2008
In this issue:
Special edition incorporating ALQ and Mujeres Adelante
ALQ incorporating Mujeres Adelante
on the effectiveness of prevention
programmes. Criminalisation laws
are often unclear, and therefore,
subject to interpretation by
courts. This also raises questions
about how marginalised groups
are treated by the law. Legal
uncertainties may leave already
marginalised – or in some cases
criminalised – groups, such as sex
workers and intravenous drug users,
vulnerable to abuse by courts.
For women, a major concern is
the potential criminalisation of
mother-to-child-transmission of
HIV in poor and isolated areas,
where women have no access to
prevention of mother-to-child
transmission (PMTCT) services.
Second, women are often the
first person in a household to
learn of their HIV status through
routine or ante-natal testing, which
leaves women open to blame
from partners, who have yet to
test, and vulnerable to violence.
Further, men often have greater
access to legal services and
legal literacy, which could skew
the proportion of cases brought
against women, even in situations
where it is impossible to ‘prove’
who transmitted the virus to
whom. It is also unclear how the
gendered dynamics of sex will
play out in the courtroom. Will
judges and juries take into account
the difficulties some women face
in negotiating condom use? And
in countries, where marital rape is
not acknowledged, could ‘consent’
be used as a defence by husbands
who have forced their wives to
have sex with them?
A rights-based approach to
the AIDS pandemic has gained
a lot of momentum over the last
decade, yet the move towards
criminalisation does nothing to
support this. On the contrary,
criminalisation places often hard
won rights of HIV positive women
and men in jeopardy and, as a
result, threatens an increase in
stigma and discrimination.
Male Circumcision – Hot
Topic II
Although there was plenty of
enthusiasm around plans to roll
out medical male circumcision
projects in Africa, women
including HIV positive women,
were divided. ICW’s position is
to be wary. The data from existing
research can be interpreted
in different ways, and the
implementation of the programmes
may be much more difficult to
achieve than is being suggested.
Women, including HIV positive
women, raised other objections.
ICW members and others reported
newly circumcised men happily
sharing the news that they can now
have sex without using condoms.
Other members from cultures,
whose men are already routinely
circumcised, pointed out that
this had not necessarily meant
that significantly lower numbers
of men were contracting HIV in
their communities. Another ICW
member remarked that looking
after newly circumcised men
would present yet another burden
of care for women. This brought
to mind an issue raised in ICW
before, namely the feminisation of
blame. For instance, as women are
often the first to be diagnosed in
a family, via routine or antenatal
HIV testing, they could be more
likely to be blamed. In these
circumstances, if their partners are
circumcised, these women could
end up taking the blame. In all the
discussions in the WNZ, women
agreed that male circumcision
should never take the place of
other ways of preventing HIV
transmission, whether that was
through safer sex campaigns,
achieving women’s human rights,
the alleviation of poverty, or
supporting communities.
Gender, Women and
Violence – Hot Topic III
Gender-based violence
(GBV), or violence against
women (VAW) attracted a lot
of attention in discussions,
often focusing on transmission
of the HI virus. ICW worked hard to bring already
HIV positive women’s experiences of violence into
the picture. One area which came up was how the
words ‘gender-based violence’ are increasingly
being used in place of ‘violence against women’ to
describe a broad range of acts of violence that women
experience. In one session in the WNZ, women tried
to settle on when and where it was appropriate to
use the word ‘woman’, and when ‘gender’. Some
ICW members and women from other networks
reported that their members did not always know
what ‘gender’ meant. One woman said that gender
was a way of understanding the relationship between
men and women. To understand violence, one had to
understand that relationship. Another suggested that
‘gender’ made it possible to bring in the experiences
of transgendered, and intersex people, as well as
lesbians and gays. She said, ‘We can’t just talk about
men and women anymore’. An ICW staff member
said that in her experience in large NGOs and other
global organisations, if one wanted to be specific
about HIV positive women’s needs, one had to use the
word ‘women’. Otherwise women and their specific
experiences can be lost underneath the catchall word
‘gender’. Most women seemed to agree that however
one uses the word, it is not ‘gender’ that carries out
violence against women. It is real people, most often
men, who beat, bully, or bloody women.
In the end, gender is informed by the influences
of all the other forces at work in our lives, including
class, race, sexuality and geography. But it is people,
real people, who sweat, cry out in pain and joy, and go
about their ordinary lives day by day. As HIV positive
women we have to be specific about exactly who we
mean when we talk about gender.
ICW Litigation Project in Namibia –
Hot Topic IV
HIV Positive Women Against Forced or Coerced
Sterilisation
…Women were sterilised without their knowledge
during other procedures, such as caesareans…
3
Hot topics in Mexico
…criminalisation
…seemed to be
on everyone’s
lips…
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Editorial…
…Women already have the capacity. For me,
what is lacking is broadening the notion of
inclusion, because most of our contributions are
not well valued. It is necessary for institutions,
organisations, networks, the UN system, or
other networks of positive and non-positive
members to redefine what we think participation
is, and how people can participate in very many
different ways. [Mari Jo Vazquez, 2008]
This special edition of the ALQ is looking
at women’s rights and HIV. The various articles,
contributions and comments are a reflection of existing
and emerging ‘hot issues’, debates and dialogues,
as well as of the ‘left out’ topics and continuing
‘invisibilities’ – as transpired at the recent 2008
International AIDS Conference in Mexico City. This
edition raises many questions, including as to whether
or not women’s rights and realities are adequately
reflected in, and responded to, in the proceedings of
international AIDS conferences; whether or not the
realities and needs of local women are represented at
the conference; whether or not ‘marginalised’ groups
and topics are moving towards the mainstream, or are
remaining at the margins of research, debates and
dialogues; whether or not human rights are indeed at
the centre of global, regional and national responses
to HIV and AIDS; and whether or not women’s
realities and needs are ‘visible’, and women’s voices
are ‘heard’.
This issue is a Special Edition in many ways.
It is special because of the variety of contributions,
ranging from articles and reflections to feedbacks and
comments about women’s rights and HIV, as to the
extent to which the topic was present, and presented,
during the Mexico Conference. It is also a Special
Edition, as this ALQ has been jointly produced by the
ATHENA Network and the AIDS Legal Network –
and hence, this edition has two editors: Tyler Crone
and Johanna Kehler. And last, but not least, this is a
Special Edition as it is a naturally grown amalgamation
between the Mujeres Adelante – the daily newsletter
on women’s rights and HIV, published during the
2008 AIDS Conference – and the ALQ.
Looking back at the recent International AIDS
Conference in Mexico City, it is striking to realise
how much remains the same, even as the global AIDS
response changes.
For the 2002 International AIDS Conference,
an ad-hoc global alliance, which Tyler was part of,
collaborated with local women living with HIV in
Barcelona, with two central goals. One was to make the
International AIDS Conference accessible to the local
community and in so doing, create mechanisms by
which research, advocacy, and community were in the
position to meet. The second was to mobilise around
a ‘gender agenda’ and thus, place women’s rights and
gender equality at the heart of the AIDS response.
HIV positive women, feminists, service providers,
and researchers, among others (with all of us wearing
multiple hats) came together under two umbrellas –
that of ‘Women at Barcelona’, for our work to organise
around gender and human rights at the conference,
and that of ‘Mujeres Adelante’, for our collaboration
with a local organisation of women living with HIV to
build a parallel conference embedded in the Barcelona
community that would be free and open to the public.
ALQ Special Edition – October 2008
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At a recent ICW advocacytraining
project with young
Namibian HIV positive
women it came out that
some of the participants
had been sterilised, without
their informed consent.
Alarmed, ICW activists,
including the young women,
undertook a series of focus
groups and interviews, which
substantiated the young
women’s experiences of
sterilisations by hospital staff.
So far, this ongoing research
has discovered that out of the
230 HIV positive women, who
participated in the research, 40
had been subjected to forced or
coerced sterilisation. Thirteen
cases have been taken up for
possible litigation by the Legal
Aid Centre (LAC) in Namibia
and all 40 cases have been
presented to the Deputy Minister
of Health and Social Services.
In addition, at least two of the
women, represented by LAC,
have filed cases before the High
Court alleging violations of
their right to life, human dignity,
equality and the right to be
free from cruel, inhuman and
degrading treatment.
How were women forced or
coerced?
• In many cases, informed
consent was not adequately
obtained from the women
• Consent was obtained under
duress or pressure
• Consent was invalid,
because the women were not
informed of the content of
the document they signed
• Medical personnel failed
to provide full and accurate
information about the
sterilisation procedure
• Women were asked to sign
forms, while they were in
labour, or on their way to the
operating theatre
• Women were told or given
the impression that in order
to obtain other medical
procedures, such as an
abortion or caesarean section
or even medical help to give
birth, they would have to
consent to sterilisation.
In all cases, the medical
personnel failed to provide women
with a full description of the
nature of the procedure, its effects,
consequences and risks. No
one informed the women of the
irreversible nature of sterilisation,
or provided them with information
on alternative forms of birth
control and family planning. ICW
continues to engage in research
and advocacy with partner
organisations to end the forced
and coerced sterilisation of women
living with HIV.
…Unfortunately, some of
the women also experienced
discriminatory treatment. In
one case, nurses refused to
touch the patient and made
disparaging remarks about
her…
Young Namibian Women
Speak out
Esther Sheehama and
Veronica Kalambi are both young
positive Namibian women, who
are working on ICW’s litigation
project. Esther now sits on the
National Council HIV Committee
in Namibia. Both attended AIDS
2008 and both made presentations
in the main conference, the WNZ
and The Positive Space. Esther
and Veronica made a strong
impact with their articulate and
confident talks, which gave clear
information, framed by personal
testimonies.
…Veronica and I presented
the Namibian Litigations
research to a large session
in the WNZ. Many women
and men came to listen and
give their views on forced
sterilisation. It’s a big issue
for me and most women
in Namibia, because we
are not allowed to speak
out against the injustice
that happened to us. Now,
with the ICW project
and mentoring from Jeni
Gatsi, we are fighting for
our rights. Although we
have a national Charter,
which seeks to tackle
discrimination against HIV
positive people, the reality is that HIV positive
women are not treated equally to other women.
We want to know what the community is doing
about it? What is the church’s action on the issue
and what are HIV negative women doing? We
want doctors, who do forced sterilisations to be
accountable.
[Esther Sheehama]
…I presented on the project at the only allpositive
panel in the main conference on the
sexual and reproductive health rights of HIV
positive women and men. When I got home after
the conference, many women asked me when
we will go to their regions to do the research on
their experiences of sterilisation. I will make
sure I use the skills I got from AIDS 2008 and
make a difference for many old and young HIV
positive women. I learned how to set up networks
in an ICW session and how to help existing ones
become even stronger, in order to uplift our
members and empower women to stand up on
their own.
[Veronica Kalambi]
FOOTNOTE:
1. Thanks to Aziza Ahmad for the material in this report.
Luisa is the Monitoring and Evaluation Officer of ICW.
5
Hot topics in Mexico
…women
agreed
that male
circumcision
should
never take
the place of
other ways of
preventing HIV
transmission…
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ALQ incorporating Mujeres Adelante 6 Editorial
Mujeres Adelante is the name we choose to carry
forward for our newsletter on women’s rights and HIV
at the most recent International AIDS Conference
in Mexico City – and it manifests a spirit that we
seek to embrace. Mujeres Adelante – as the parallel
community forum at the 2002 International AIDS
Conference in Barcelona, as a newsletter at the 2008
International AIDS Conference, and as this special
issue of the ALQ – manifests the desire of diverse
stakeholders in the AIDS response to create a shared
voice and vision around gender equality and women’s
rights; to bridge movements; to link sectors; and to
create channels through which local and global are
meeting, as well as the passion of women from around
the world to interpret, own, and advance a rights-based
response to HIV and AIDS.
In the following pages, we have attempted to
capture pieces of the conversation that transpired at
the recent International AIDS Conference in Mexico
City and hence, take a snapshot of the state of women’s
rights in the response to HIV and AIDS. Further, we
have attempted to offer a gendered analysis of who
was speaking and what was said. It is our hope that
this special issue of the ALQ will manifest the spirit
and intent of Mujeres Adelante – women moving
forward – and will serve as a portrait of where we
have come from, and how much more distance we
have yet to go in advancing gender equity and human
rights in the global response to HIV and AIDS.
This special issue explores the implications of male
circumcision as an HIV prevention tool for women and
raises critical issues, such as how male circumcision
could reinforce the stigmatisation of women living
with HIV as ‘vectors of disease’, and could undermine
important gains in negotiating condom use, if male
circumcision is viewed as a ‘natural condom’, or
an alternative to a vaccine. The various discussions
pertaining to male circumcision raised the question as
to why the global community is investing so heavily
in male circumcision for HIV prevention, where HIV
is disproportionately impacting women, and when
the direct benefit of HIV prevention is only accrued
by men. More than anything, the debate around male
circumcision highlighted three essential points – 1) the
need to engage women in HIV prevention research;
2) the need to build stronger links between research and
community; and 3) the need for a broader array of HIV
prevention methods that work for women and men.
Gender-based violence was another focal point at
the recent International AIDS Conference in Mexico
City. Anand Grover, the newly appointed Special
Rapporteur on the Right to Health, stated:
…‘so-called’ normal women are being subjected
to violence and that is not talked about. It is not
an issue that is considered to be worthy to be
talked about in the HIV world. That is a tragedy
because HIV is closely linked to violence as is
health. And if a woman becomes HIV-positive
more violence ensues, which I think, the
movement has to take up.
And while gender-based violence was a focal
point for multiple sessions at the International AIDS
Conference, gender-based violence remains largely
unexamined, as a significant driver and consequence
of HIV infection, in the mainstream discourse. It is
our strong belief that gender-based violence becomes
increasingly recognised as an issue that deserves
specific policies, programmes, and budget lines, so as
ALQ Special Edition – October 2008
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ALQ incorporating Mujeres Adelante S
he noted that of all HIV
infections, 40% are
among the youth – HIV is
increasingly young, significantly
female, and increasingly
marginalised, and that below
50% of the goals set for access
and prevention have been met.
Referring to key messages
developed by the Mexico Youth
Force, a wide ranging coalition of
groups, she articulated the call for:
• Rights: We have the right
to comprehensive, accurate
information, and service to
protect our sexual health;
• Respect: for our realities,
our experiences and our
contributions;
• Responsibility: together, we
must create an environment,
where we have power over
the decisions that affect our
health and lives; and
• Resources: we need
training, mentorship,
funding and opportunities.
She also called for the
‘implementation of rhetoric’,
making governments accountable,
and for greater investment in
youth capacity. In referring to the
inconsistent messaging towards
young people, she gave the
example that at
…age 18 we are able to fight
in the military, but
we cannot access
contraception.
This has been, because policy
is informed by theological beliefs
and is not evidenced-based. And
we have not participated in the
development of that curriculum.
She noted that the Caribbean
governmental meeting has adopted
evidenced-based sexual health in
informing policy and services and
added ‘We expect to be at the table
with you’.
Jaime Sepulveda from the
Gates Foundation called for
a quantification of the effects
of HIV prevention globally.
He advocated for combination
prevention strategies to
accompany combination therapy
and increased funds for a full
range of prevention options. He
affirmed that HIV prevention
was not only cost-effective, but
cost-saving. He noted the need
to address the integration of HIV
and AIDS and family planning
and to, in particular, address the
need of unintended pregnancy.
In answering a question on the
continuum of care, he noted, that
…we cannot treat our way
out of the epidemic, we need
combination prevention
strategies.
Alex Coutinho from Uganda
noted the achievements of a
million people on treatment, yet
noted that 69% of those who
should be on treatment are not
on treatment. He noted the need
to keep parents healthy, and to
treatment as a strategy to deal with
orphans. He claimed that treatment
had already saved 200,000 from
orphanhood, and pointed out, that of all the alternatives
for raising children we know that, parents (we might
say mothers) are the best.
In spite of the great advance in HIV treatment,
new infections significantly outpace the numbers of
people started on ART by a ratio of 5 to 2 (2.5 million
new HIV infections, in comparison to 1 million on
treatment).
More women than men globally are starting
treatment, but only 12% of women have been assessed
for their own treatment needs during pregnancy. Even
this small percentage is a significant increase over the
last two years.
He also noted that the number of infected babies
born to HIV positive mothers has been greatly reduced
by prevention from mother-to-child transmission of
HIV (PMTCT). Mothers receiving PMTCT, which was
only 10% in 2004, is 33% in 2007.
7
Young women’s voice
In Focus…
Young woman’s voice heard for
the first time…
Elisabet Fadul, a youth activist from the Dominican Republic became the first young woman
to address the plenary sessions, since the start of the International AIDS Conferences.
Ida Susser, Zena Stein and Marion Stevens
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to be in the position to effectively address the gendered
nature of HIV risks and vulnerabilities.
Reproductive choice – cornerstone of ATHENA’s
work – remains contested terrain, as HIV positive
women claim a right to safe, healthy motherhood,
while at the same time, coercive practices, such as
the forced sterilisation of positive women in Namibia,
and legislative trends to criminalise mother-to-child
transmission of HIV, continue. The dialogue and debate
in Mexico City reached new levels. Breastfeeding,
safe and legal abortion, access to contraception, and
the fertility desires of women living with HIV took
the stage in multiple sessions. Thoughtful research,
and behind the scenes advocacy, brought forward
important discussions that had never before taken
space at an International AIDS Conference. Among
numerous conference delegates and community
members there was great eagerness to learn more,
and to engage, the entirety of reproductive choice in
all of its complexity. A poster discussion on abortion,
breastfeeding, and prevention of vertical transmission,
among other topics – co-chaired by Tyler – was filled
such that there was not an empty seat or a space to
squeeze against the wall. A telling moment was when
a physician from Chicago sought to find guidance and
documentation of best practice on how to support her
HIV positive women clients’ to conceive and carry
successful pregnancies – materials that have to date
not been central, nor welcome in the AIDS response.
If people were voting with their feet, the demand
for more research – discussion – and debate around
reproductive choice certainly was loud and clear.
The last point to be made here is about realising the
spirit of Mujeres Adelante through this special edition
of the ALQ, and the creation of inclusive spaces, where
diverse stakeholders can engage and contested issues
can be interrogated. This special edition includes
notable critiques around the resounding absence of
attention to the particularities of lesbian women’s
experience at the nexus of women’s rights and HIV,
even as lesbian women are disproportionately affected
in specific settings and are leaders in the field. This
issue also includes indigenous women speaking with
their own voice – and celebrates the innovation of
women at the frontlines of the response in different
places with distinct backgrounds, but with similar
visions for justice and equality.
Even more, Mujeres Adelante is about finding
ways for all of us, who are committed to advancing
women’s rights and gender equity, to meet – whether
or not our work is focused on the local communities
where we reside, or on transforming UN institutions
and holding them to account. Mujeres Adelante is
about building new and stronger alliances between
the margins and the center – and about making visible
what is all too frequently overlooked and giving voice
to what is all too frequently silenced. And as we
chanted at the 2002 International AIDS Conference,
as we marched into the closing programme to protest
the lack of space and lack of attention afforded to
women and girls, ‘Mujeres adelante estamos aqui!’.
Johanna Kehler & Tyler Crone, October 2008
ALQ Special Edition – October 2008
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At the same time, he called
for greater efforts to address
violence against women and
sex workers. In addressing
medical male circumcision, he
noted the limitations of the three
research trials, which has lacked
community-based studies, which
can indicate how this possible
strategy might have a population
effect. Currently, we do not know,
and have not seen, the results
of the randomized clinical trials
(RCTs) on a population. In
addressing messaging, he noted
the confusing negative messages
and suggested that messaging
should capture ‘how to have sex,
have fun and keep safe’.
In commenting on the
empowerment of women, he noted
that it was often just addressing
education and economic issues
– but not sexual empowerment.
Urbanised women have one level
of empowerment missing – that
of sexual empowerment. Women
need this, and to have a continuum
of sexual and reproductive health.
In answering a question about
deporting illegal immigrants from
Europe, he said that there is so
little opportunity for treatment
in Uganda that they should keep
people in the UK on treatment, as
part of their contribution of the
global scale up of treatment.
And in reference to research he
noted that less than 20% of local
research findings are translated
into policy.
Jeffery Garnett presented an
interesting set of models showing
the estimated rise in the number
of people living with HIV and
AIDS around the world. In the
period 1990 to 2000 the rise
was very steep, but had levelled
off somewhat everywhere. The
numbers of people living with
HIV and AIDS depend on those
who survive, which will be
higher with adequate access to
successful HIV treatment, and
the number of new cases. In
discussing HIV prevention, he
noted that while reduction of
multiple sexual partners is but one
of the strategies, it is also about
condoms, and it is a mistake to see
anything as a ‘magic bullet’.
Later in the day, there were a
number of sessions that in a sense
addressed some of the issues
raised in the plenary.
An abstract session had a
presentation on the female condom
and affirmed that it is the only
tool a woman can use to protect
herself from HIV. But women
need to be empowered how to use
it – like a bicycle or a cell phone
or a computer. And men need to be
familiar with the female condom
– how it looks and how to use it
together. The paper called Female
condom breaks gender barriers
described the training of trainers,
whose jobs it was to educate
women how to use the female
condom – with excellent results.
In the Women’s Networking
Zone, ICW held a session titled
Putting ‘women’ back into
‘gender’, which yielded an
excellent discussion on how the
language we use informs the
spectrum of policy, planning and
implementation. ‘Gender’ has
been a euphemism for ‘women’.
However, this has been a term for
a range of meanings, often not
being very specific, and could,
thus, leave women ‘invisible’. At
the session, participants noted
the sentiment that lesbian women
felt left out of this equation, and
how the involvement of men
needs to be carefully negotiated
and crafted in the realm of gender
programming. Programming on
gender needs to always work for
women, and the tools of gender
analysis are very useful – without
losing women in this activity
of ‘gender’. There is a need to be specific about who
we are and what we want. It was also noted that, for
example, medical male circumcision programmes need
to work for women. The outcome achieved by male
circumcision needs to reflect the inter-connectedness
of the world, ‘humans are not lab rats’ – the individual
protection needs to be translated and understood, if it
can be applied to a community.
And later in the afternoon a skills building
workshop was held on Reproductive choice and HIV
and AIDS facilitated by Ipas and the Health Systems
Trust. It was the first-ever session at an IAS conference
to address the issues of abortion and HIV and AIDS.
In addressing a human rights framework, the session
reviewed international agreements, and worked on
advocacy strategies to articulate these issues. The
facilitators made it clear that women have the right to
have the outcome of a choice to a healthy pregnancy
and baby, or to choose to have an abortion. Even in
instances where abortion is not legal, women have the
right to have post-abortion care. This is increasingly
important in cases where HIV positive women have
chosen to have an illegal and unsafe abortion and, as a
result, could seriously risk their lives.
Ida is a Professor of Anthropology at
the University of New York Graduate Centre
9
Young women’s voice
…policy is
informed by
theological
beliefs and
not evidencebased…
Comment: We need to move beyond this
International AIDS conferences have always presented us with an ongoing struggle to have our voices heard – to claiming our spaces
beyond the margins of the conference.
We need to move beyond this: have our many issues seriously listened to, our experiences and expertise acknowledged, so that we
no longer have to ‘fight’ for a space, but can put our energy into ‘fighting’ for our rights and improving the lives of women.
Vicci Talis, OSISA, South Africa
Special Edition – October 2008 ALQ
Special edition incorporating ALQ and Mujeres Adelante
ALQ incorporating Mujeres Adelante 10Editorial
Thank you to everyone, who contributed
to this special joint edition of the ALQ,
and most especially to Dr. Johanna Kehler
and the AIDS Legal Network (ALN) for inviting
ATHENA to collaborate. Producing a daily
newsletter at the 2008 International AIDS
Conference in Mexico City, and this special
joint edition of the ALQ, has provided us an
unparalleled opportunity to assess the state
of women and HIV globally; to see where the
women’s movement and the HIV movement
intersect and fall down; and to gauge our
success in utilising a rights-based framework
in addressing HIV and AIDS, through the very
stakeholders, who are each day at the front
lines of the response, whether it be community
mobilisation or public health research.
Thank you to Cynthia Eyakuze who made
our work in Mexico City and the production of
Mujeres Adelante possible through her shared
expertise, and the generous funding of the Public
Health Program of the Open Society Institute
(OSI). Thank you to Maria de Bruyn, ATHENA
Steering Committee member and Senior Policy
Advisor at Ipas, for her work in conceptualising
and developing Mujeres Adelante. Thank you
to our core team of writers in Mexico City,
whose timely response to ‘deadline’ was without
compare – Dr. Ida Susser, Dr. Zena Stein,
Marion Stevens, Luisa Orza, Ximena Andion, and
Sue O’Sullivan. Thank you to our team of doctoral
students Risa Cromer, Daisy Deomampo,
Kate Griffiths, and Ted Powers, who tracked
relevant sessions on women and HIV at the
Conference. Thank you to Rachel Yassky, and
again to Ida Susser, for their behind the scenes
efforts. Our extraordinary youth team of
Jonah Kreniske, Saajid King, and Aisha King
tackled all, and were essential to the of the
Mujeres Adelante in Mexico City. Thank you!
This global adventure was only possible
because of the vision, skill and unwavering
dedication of Johanna Kehler. Thank you.
Melissa Smith, and the entire staff of the AIDS
Legal Network, worked through the day and
night to produce the beautiful and powerful
forum for women’s voices in the AIDS response
that Mujeres Adelante represented.
E. Tyler Crone, ATHENA
ATHENA says Thank you!…
ALQ Special Edition – October 2008
Special edition incorporating ALQ and Mujeres Adelante
ALQ incorporating Mujeres Adelante
How do young women
make sense of their
sexuality within
transactional sex? How
can an emphasis on
sexual pleasure and
desire contribute to
more effective HIV
and AIDS prevention
programming? What
choices are available to
HIV positive women and
men, who desire and
intend to have children?
The papers presented at the
panel Reproductive Health:
Sexuality, Fertility and Desire
covered a range of often
overlooked themes in discussions
around reproductive health and
HIV prevention. Drawing on
ethnographic, qualitative and
quantitative research, each of the
speakers delved into emerging
sexual and reproductive health
and rights issues, including
sexual pleasure and desire,
fertility desires among people
living with HIV and/or AIDS,
and women’s beliefs about
transactional sex.
The session opened with
the theme of gender, power and
sexuality within transactional
sex in research presented
by Joyce Wamoyi. Through
a discussion of the range of
perspectives on sex and sexuality
within transactional sex,
Wamoyi revealed that young
Tanzanian women’s attitudes
about transactional sex are
not necessarily governed by
poverty, but are in fact linked
to feelings of autonomy, pride
and a sense of value. Indeed, for
many of Wamoyi’s respondents,
transactional sex represented
a way for young women to
‘equalise power in sexual
relationships’, signalling the
importance of understanding
gender and power dynamics
associated with the practice.
Issues of pleasure and
desire were also brought to the
forefront in discussions around
empowerment of women and
HIV prevention. Tsitsi Beatrice
Masvawure sought to present
an alternative view of women’s
sexuality, arguing that contrary
to common belief, female
sexuality, especially of African
women, is not always sexually
subordinate, disinterested, or
reluctantly sexual. Though
sexual violence and coercion
undoubtedly permeate many
women’s lives, Masvawure
argued that this comprises but
one aspect of female sexuality.
Indeed, through ethnographic
research Masvawure reveals that
young unmarried African women
become active ‘lust seekers’, and embody an active
‘female sexuality that has sexual pleasure at its
core.’ As a result, some young women are at greater
risk of HIV infection within contexts of pleasure,
rather than in contexts of danger. She concludes that
the challenge for HIV prevention is to explore how
to develop programming that acknowledges women’s
pleasure, while recognising that violence, too, is an
ever present danger.
Issues surrounding fertility desires rounded
out the reproductive issues discussed within the
session, with several panellists exploring fertility
intentions of people living with HIV and/or AIDS,
and concluding that further guidelines and HIV
pre-conception counselling are needed to help HIV
positive women and men make informed decisions
about parenthood.
Each of the session’s presenters offered
provocative research on gender, power, pleasure
and desire. How do these findings translate into
effective HIV prevention programming? In the case
of Wamoyi’s research in Tanzania, HIV interventions
should train young women to incorporate safer sex
practices into negotiation for gifts or money by
encouraging them to make use of the power, they
believe is theirs within transactional sex. However,
with regard to research on sexual pleasure and
desire, further discussion on the notion of pleasure
itself is needed. That is, in order to effectively take
up pleasure within HIV interventions, it is crucial
that we understand the various ways in which
pleasure – like gender – is constructed and not taken
to be a self-evident experience.
Daisy is a Doctoral Student at
the University of New York.
11
Understanding sexual pleasure and desire
In Focus…
Understanding sexual pleasure
and desire
Daisy Deomampo
Special Edition – October 2008 ALQ
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ALQ incorporating Mujeres Adelante 12HIV positive women in Mexico
HIV, this makes it more difficult
to attend to the problems they
face. Fortunately, HIV positive
women have started to organise
themselves with the aims of
improving their life expectancy;
improving the quality of
prevention and care; improving
their quality of life; as well as
being present in decision-making
arenas that affect their lives.
Invisibility, silence and
indifference will end when the
brave, convinced and strong
women with HIV, and those who
recognise their vulnerability to it,
have their views heard!
Hilda is the National
Representative of ICW in Mexico.
Everyday, the HIV and
AIDS epidemic takes on
more of a woman’s face.
The low profile of the
problems faced by this
sector of the population
has repercussions,
evidenced in the scarce
provisions made for
women’s prevention
and care needs.
The situation of Mexican
women, and the gender
inequalities they face, ties
Mexican women to the home,
unaware of the risks of acquiring
HIV, and, even when they are
aware, they lack the power
to insist on condom use.
Unfortunately, there is also the
real possibility of this request
being met by physical or verbal
aggression, since women are
always at risk of being considered
‘promiscuous’, or coming across
Mexican macho insecurity.
Of the total number of
registered cases of AIDS in our
country, since the start of the
epidemic in 1983, 82% are men
and 17.2% are women. But official
figures show that the number of
women with AIDS is increasing to
one woman for every five men.
The mortality rate for women
with AIDS increased from 0.4
to 2.8 for every 100 thousand
inhabitants. That is to say, in just
nine yeas, the number of women
dying of AIDS has quintupled.
It is calculated that in Mexico
there are about 42 thousand
women with HIV – mothers,
professionals, widows, mothers of
positive children, wives, peasants,
women deprived of their
freedom, etc.
Also, we have to mention
vertical transmission, that is to
say, that an infected woman
can pass HIV to her baby during
pregnancy, during childbirth, or
whilst breastfeeding. It is very
important that pregnant women
are offered confidential HIV
testing and counselling with their
fully informed consent. Receiving
an HIV test result at this point
allows for the steps to be taken,
which in the majority of cases
prevent HIV transmission to the
baby.
Another important issue is
the right to decide whether or
not to get pregnant, despite
living with HIV, and even though
one’s partner is living with the
same condition. There is now the
possibility of using the technique
of ‘washing’ semen and taking
treatment during pregnancy,
which can make it possible to
have a healthy baby.
Historically, women have
been discriminated against,
marginalised and assaulted, and
in the case of those living with
…scarce
provisions
made for
women’s
prevention
and care
needs…
Special report
HIV positive women in Mexico…
One woman’s voice
Hilda Esquival
ALQ Special Edition – October 2008
Special edition incorporating ALQ and Mujeres Adelante
ALQ incorporating Mujeres Adelante beginning in Durban, we now have in Mexico the
Global Village and the Women’s Networking Zone.
The Women’s Networking Zone is very important,
because it is where women’s issues are going to
be more addressed, and better addressed in detail,
especially for HIV positive women.
I would like the epidemic to be won and I mean
won in the sense of being able to stop it, fully stop
it. But I don’t think that this can be done without
really addressing women’s situations all over the
world. I think that poverty should be addressed with
gender imbalance, and gender inequality. All these
things are put aside in the big discussions. I don’t
think that we can stop AIDS, without addressing
those big issues somehow.
I think that we follow a model of participation,
which is not really participatory. We don’t really
see the potential, the capacities, the abilities and the
skills of everybody to be contributing at the table.
Leadership is defined monolithically, while I think
we should look for all the ways of contributing as
leaders, not just as the kind of leader that pushes
people to one ideal. We need to value leaders
that contribute in very, very diverse ways and
that is the same for participation. Women are not
participating, because most of the time we are
obliged to participate in ways that we are not able,
or not willing to do. If we don’t have the skills to
participate, we are not invited to the table as full
and equal participants.
Women’s issues are
a little bit more
in the agenda,
and positive women’s issues are
also a little bit more visible in
the agenda. I remember when I
arrived in Durban for my first
International AIDS Conference.
I really was high spirited with
hoping that something important
happen at the conference. It
happened, for me. It happened
as I attended the first Women’s
Networking Zone in Durban
with the name ‘Women at
Durban’. From that little
In my opinion…
Broadening the notion of inclusion…
I would have expected in this conference that women’s issues from the region would have
been more in focus. I was expecting this conference to open more to women’s issues and,
especially, to Latin American issues. While I know that the conference is for everybody and the
conference is for global issues, I think that the Latin American women have been put aside all
along. I was really expecting and will expect yet, that this issue is going to come to light.
Mari Jo Vazquez, Chair of the ATHENA Network and former chair of ICW
Broadening the notion of inclusion
13
Special Edition – October 2008 ALQ
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14Female Condoms…a
human rights issue?
Women already have the
capacity. For me, what is
lacking is broadening the
notion of inclusion, because
most of our contributions are
not well valued. It is necessary
for institutions, organisations,
networks, the UN system, or
other networks of positive
and non positive members
to redefine what we think
participation is, and how people
can participate in very many
different ways. It is important
to value those ways, not just
bring someone and make that
person to contribute only in a
very didactic way. While we
need to tell people: ‘ok you need
to learn to be in the high-level
meeting’, we also need highlevel
meetings to be able to
include people in different ways,
not just in a monolithic way.
It’s amazingly hard to see a
conference, a big international
conference, going on in your
country, in your town, talking
about issues that are your own
issues and you can not attend,
because you cannot pay the fee
for – or to be there, without
having the opportunity to
participate. Through ‘Women
at Barcelona’ and ‘Mujeres
Adelante’, I felt there was the
space where women were able
to participate in the conference,
while at the same time able to be
themselves and share, hear and
make use of the networking that
has been happening in conferences from Durban to Mexico – building on the concept
of women’s inclusion and participation. I would like to see a stronger link between
conferences, so that we are working together from one conference to the other, and not
only for the conference.
Being at the conference is an opportunity to establish links, and to promote
solidarity among different women’s groups. The Women’s Networking Zone is
attended by very many people, and it is important to take that opportunity to make
common goals, and to think of ways to work together for the future. We just lack a
little bit of glue.
…we follow
a model of
participation,
which is
not really
participatory…
…we are not
invited to the
tables as full
and equal
participants…
ALQ Special Edition – October 2008
Special edition incorporating ALQ and Mujeres Adelante
15
Female Condoms…a human rights issue?
The International AIDS Conference is in itself a
manifestation of the contradictions inherent in the AIDS
response. The vibrancy of the Global Village and the
cutting-edge conversations that were occurring within it –
whether or not it was around mobilising men for gender
equity, or community driven strategies to addressing
gender-based violence – were literally set apart in a
massive tent…a fifteen minute walk across planks and
down ramps from the plush, comparatively quiet hallways
of the main Conference setting.
The dialogue and ‘cross-pollination’ in the Global
Village was provocative and eye-opening – diverse
stakeholders brought together in one space to see, learn
and share in one space. Young people crowded with
artists passing by protests to ‘end the drug war’ – ‘empower
women’ – or ‘de-criminalise sex work’. This conference
had an indigenous persons’ networking zone, a cultural
networking zone, a sex worker networking zone, a
community dialogue space, a human rights networking
zone, a youth pavilion, and the women’s networking
zone, among many more. The stretch and reach of the
Global Village at the 2008 International AIDS Conference
was without compare.
Yet, as in prior conferences, the conversation that
was transpiring in the Global Village was not integrated
with, or connected to, the discourse in the main
conference halls. At the 2004 and 2006 International
AIDS Conferences, the Global Village was at least placed
under the same roof allowing for a sense of physical
connection between science and community. So, while
the presence of community stakeholders in the AIDS
response is becoming increasingly rich and diverse
at the International AIDS Conference, as represented
by the Global Village, their voice and visibility is
increasingly removed and distinct from research and
science within the main conference hallways. This
distance and isolation is a missed opportunity for us all.
E. Tyler Crone, ATHENA Network
Comment: A missed opportunity for us all…
AIDS, Sex, and Culture is a revealing and provocative examination of the
impact of the AIDS epidemic on women through the lens of Southern Africa.
Moving from her own narrative of growing up in South Africa, anthropologist
Ida Susser explores the global inequalities underpinning the AIDS epidemic;
the logic of Mbeki’s AIDS denialism, recurrent stereotypes of the
‘Dark Continent’; and women’s fight for access to the female condom,
among other issues.
Dr Susser brings together broad discussion of global conditions with the
particularities of women’s experiences on the ground in South Africa, Namibia,
and Botswana. Ultimately, Susser argues that despite the challenges women
face and the devastating impact of HIV in Southern Africa – there are ‘spaces of
hope’, where women are transforming the conditions of their lives.
Ida Susser’s book shows how patriarchal culture provides the ground for the formation of destructive networks of poverty,
sex and AIDS. Based on Susser’s cross-cultural ethnographic work, it is a masterpiece of intellectually innovative, socially
relevant research. It will be a key reference for social scientists aiming to understand the world in order to overcome our current
misery. It should be mandatory reading for students, academics, and policy makers around the world.
[Manuel Castells, University of California, Berkeley]
New publication…
AIDS, Sex and Culture
Global Politics and Survival in Southern Africa
By: Ida Susser
Special Edition – October 2008 ALQ
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ALQ incorporating Mujeres Adelante
Quoting the experience of one
woman living with HIV in South
Africa, advocate Michaela Clayton
called upon the audience of the
seminar To Transmit or Not to
Transmit: Is That Really the
Question? Criminalization of
HIV Transmission, to imagine
the outcome of increased
criminalisation on HIV positive
women facing economic
dependence, domestic violence
and rape:
…I got married in 2004,
and my husband started
giving me STDs. He goes
out with women. When I ask
for a condom or go to the
clinic for treatment, he starts
beating me…
After one attempt to access
HIV and AIDS services, this
anonymous woman’s husband,
who himself refuses to test for
HIV, beat her until she miscarried,
in her fourth month of pregnancy.
Some women’s rights
organisations call for legal
penalties against such violent and
abusive husbands for exposing
their wives to the HI virus,
and for infecting them through
spousal rape. Nevertheless, all of
the seminar’s legal experts and
activists argued that such HIVspecific
penalties – which are
becoming increasingly common
around the globe – are likely to
further stigmatise and marginalise
women living with HIV.
Presenters argued that existing
laws are sufficient to prosecute
abusive men and suggested that
laws, which criminalise ‘wilful’
transmission of HIV, are actually
likely to disproportionately
criminalise women, as women are
far more likely to be aware of their
HIV status.
Human rights lawyer and
advocate, Richard Pearshouse,
drew the audience’s attention to
the adoption of model HIV laws
in countries throughout west
and central Africa, noting that
countries tend to adopt ‘the model’
wholesale from AWARE-HIV’s
suggestions, rather than viewing
‘the model’ as mere guidance, as
its authors claim. Alternatively,
some countries have added
language and provisions to ‘the
model’, which ‘water down’ the
model law’s non-discrimination
language and further criminalise
various forms of ‘wilful’
transmission. In two cases, in
Sierra Leone and Cote d’Ivoire,
‘the model’ has been adapted
to explicitly criminalise
‘wilful’ HIV transmission
from mothers to their children,
either in uterus or through
breastfeeding.
Meanwhile, Julian Hows
presented evidence that this
increasing trend toward
criminalisation of HIV is not
only an African phenomenon.
Presenting evidence of a
detailed study of the HIV and
AIDS laws and prosecutions
from 53 European and Central
Asian nations, he pointed out that Sweden, Austria
and Switzerland are the nations with the highest
numbers of cases in which HIV infected persons have
been prosecuted for infecting someone else through
sexual transmission. At the same time, in a number of
countries, activists for the rights of people living with
HIV and AIDS have begun to lobby for repeal of laws
that make such prosecutions possible.
In addition to prosecutions of HIV positive persons
for transmitting the virus, opponents of criminalisation
are also concerned about the increasing number of laws
worldwide, which require disclosure by HIV infected
people to spouses and sexual partners; requirements
that implicate health professionals in notifying
the sexual partners of their patients; and compulsory
HIV testing.
Kate is a Doctoral Student at the
City University of New York.
16To transmit or not to transmit
…HIV-specific
penalties…are
likely to further
stigmatise and
marginalise
women living
with HIV…
In Focus…
To transmit or not to transmit
Kate Griffiths
Comment: We need the ‘right’ women at the table
I want to move way past ‘nothing for us without us’. I want to move to ‘us’ deciding it and being squarely at the centre of it.
Sometimes ‘us’ are homogenous; and sometimes, ‘us’ face intersecting oppressions, such as homophobia or the discrimination
faced by women drug users.
We need the ‘right women’ at the table, not just anyone at the table. There are discrete solutions. It is not appropriate to
expect one woman to speak to all the issues. Women do have a lot of commonality of issues, from gender-based violence to
sexual and reproductive rights to reproductive choice. We also have a lot of diversity. I want to see women, in all of our diversity,
sitting at the table and at the centre of all the decisions that affect our lives.
Louise Binder, Blueprint, Canada
ALQ Special Edition – October 2008
Special edition incorporating ALQ and Mujeres Adelante
ALQ incorporating Mujeres Adelante
17
Resources not be diverted
discrimination. Prevention
strategies for both men
and women must be
invested in, so that these
are available, accessible,
affordable, and of high
quality. There is already
a gap between HIV
prevention strategies for
women and men; and
a scaled-up roll-out of
medical male circumcision
must not widen this
gap. Women controlled
prevention methods,
including female condoms,
must be made available
with equal commitment
and vigour.
• Criminalisation of HIV,
already a harmful strategy,
could become even
more harmful, if a man’s
circumcision status is
used to increase the legal
repercussions women
might face.
While resources devoted to
male circumcision seem to be
growing, proven prevention
methods, like the female condom
for women, continue to be
under-resourced. Equal and
adequate funding for male and
female prevention technologies
is essential. These include
microbicides, pre-exposure
prophylaxis and vaccines, as well
as structural and behavioural
interventions to reduce women’s
risk of HIV infection.
In moving forward, it remains
crucial to bear in mind that:
• Male circumcision must not
Recent research evidence has
shown
…that male circumcision is
efficacious in reducing sexual
transmission of HIV from
women to men.1
While this data is welcome
in increasing our prevention
strategies in addressing HIV, like
any other prevention strategy,
this one must integrate efforts to
advance women’s rights.
As women continue to be
at the epicentre of the HIV and
AIDS epidemic, especially in Sub-
Saharan Africa, it is imperative
that male circumcision be seen
as complementary to other ways
of reducing risk of HIV infection,
and not as a ‘magic bullet’ for HIV
prevention.
While the research shows
that male circumcision is a viable
strategy for the prevention
of heterosexual transmission
in men, it does not provide
complete protection against
HIV infection for women or for
men. Circumcised men can still
become infected with the virus
and, if HIV-positive, can infect
their sexual partners. Consistent
condom use remains the most
effective tool for HIV prevention.
The Women Won’t Wait
campaign2 urges attention
to essential factors as part of
scaling-up male circumcision:
• There is insufficient data
to show whether or not
male circumcision, without
condom use, results in
a direct reduction of
transmission from HIVpositive
men to women.
• The extent to which male
circumcision will lead to
risk compensation (i.e.,
circumcised men and their
sexual partners engaging
in riskier sex behaviour,
because of misinformation
or a false sense of
protection) is unknown.
Risk compensation may
compromise women’s
ability to negotiate
conditions of sex (if and
when sex happens, condom
use, etc) and increase
gender-based violence.
• The potential harmful
effects of male circumcision
must be monitored closely.
The WHO/UNAIDS report
advised
…policy makers and
programme developers
to monitor and minimize
potential harmful
outcomes of promoting
male circumcision as an
HIV prevention method
such as unsafe sex, sexual
violence or conflation of
male circumcision with
female genital mutilation.
• The positioning of male
circumcision as reducing
HIV transmission from
women to men may
perpetuate or reinforce
perceptions of women as
‘vectors’ or transmitters
of disease, and may in
turn, lead to increased
gender-based violence
or other gender-based
…prevention
strategies…
must
integrate
efforts to
advance
women’s
rights…
Special report
Resources must not be diverted…
Male circumcision and women’s rights
Neelanjana Mukhia
….male
circumcision
should never
replace
other known
methods
of HIV
prevention…
Special Edition – October 2008 ALQ
Special edition incorporating ALQ and Mujeres Adelante
ALQ incorporating Mujeres Adelante 18Resources not be diverted
within countries, ensuring that, where there
is spending on male circumcision, resources
are not taken away from proven prevention
interventions for women. Resources must
be allocated to ensure not only that male
circumcision procedures are done safely, but
that these interventions are also good for
women in the communities where they are
performed.
• Male circumcision should never replace
other known methods of HIV prevention
and should always be considered as part of
a comprehensive HIV prevention package.
Prevention and treatment efforts that work (e.g.
condoms, female condoms, post-exposureprophylaxis,
diagnosis and treatment of
sexually transmitted infections, HAART and
OI treatment) must continue to be scaled
up. Resources earmarked for interventions
to address women’s vulnerability, due to
gender inequality and to violence, must not be
diverted.
FOOTNOTE:
1. WHO/UNAIDS. 2007. Technical Consultation, Male
Circumcision and HIV Prevention: Research Implications for
Policy and Programming.
2. For more information on the Women Won’t Wait campaign,
please contact info@womenwontwait.org.
Neelanjana is the International Women’s Rights
Policy and Campaign Coordinator of ActionAid.
be seen as a ‘magic bullet’
for HIV prevention, but as
complementary to other
ways of reducing risk of HIV
infection.
• Communities, and
particularly men opting for
the procedure and their
partners, require careful
and balanced information
and education materials
that directly address the
need for condom use
and discuss the change
in power balance to
increase women’s ability
to negotiate safe sex and
condom use.
• Further research should
be conducted to clarify
the risks and benefits of
medical male circumcision
with regard to HIV
transmission from HIVpositive
men to women,
for men who have sex with
men, and in the context of
heterosexual anal sex.
• In rolling out male
circumcision, it will be
important to monitor rates
of gender-based violence,
as well as coercive sex
that may occur during the
period of wound healing/
recommended abstinence
post-surgery and thereafter.
• There is a need to
strengthen resources
allocated to the integration
of HIV and AIDS and sexual
and reproductive health
and rights programming,
as well as around
women’s empowerment
and gender equality. In
addition, there is a need
to ensure meaningful
participation of women,
and positive women in
particular, in research;
policy development; and,
programme planning and
implementation efforts,
including in relation to
medical male circumcision.
• It is also important to
monitor resource allocation
and flow for HIV prevention
activities globally and
One of the many interventions that takes women’s
lives into account is a ‘one-stop shopping’ clinic for women
and girls that includes family planning, HIV and AIDS
prevention and treatment, and prenatal care. Since the
1980s, some public health activists, recognising the
centrality of women’s experience of reproduction to the
spread of the HIV and AIDS epidemic, have recommended
that family planning clinics integrate HIV and AIDS services
into their routine interactions with women. As long as
they included all services, from sex education for young
girls, fertility planning for positive women, harm reduction
programmes to well-baby clinics, this would certainly be a
significant intervention.
Indeed, in 2000, this was adopted as one of the
Millennium Goals of the United Nations. Mary Robinson,
who was then the UN High Commissioner for Human
Rights, and many others have advocated for these goals
on the international stage ever since. However, such an
obvious and seemingly logical, practical, and economical
approach to HIV and AIDS prevention has seldom been
put into practice. Since 2000, family planning itself has
come under attack. For this reason, the comprehensive
approach to family planning and AIDS, visualised in onestop
shopping care and prevention programmes, seems
like an even more remote possibility, though still eminently
worth striving for.
Comment: What would it look like
to take women’s lives into account?
Ida Susser, Professor of Anthropology,
University of New York, USA
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19
Rights denials constitute violence I
n
this shared ICW –
ATHENA
satellite (Moving Forward:
New visions and actions
to address HIV and genderbased
violence), Anne-Christine
d’Adesky from ATHENA and WEACTx
brought together a panel of
activists and advocates in the area
of HIV and gender-based violence
to examine some of the difficulties
and possibilities in responding to
this ‘double epidemic’.
The session was opened
by Patricia Perez, Nobel Peace
Prize nominee from ICW
Latina, who introduced the ICW
Peace Campaign, asserting that
human rights denials of all kinds
constitute forms of violence.
Dorothy Onyango, co-chair
of ICW International Steering
Committee from Kenya, spoke
about the need for women to know
their rights in order to claim them.
Nduku Kilonzo from the
Liverpool VCT Care and
Treatment in Kenya then spoke, in
persuasive detail, about the need
for closer engagement between
the medical and legal sectors in
post-rape care and redress. At best,
medical and legal frameworks
operate in parallel, and at worst,
they can be completely divergent.
An integrated perspective and
approach is called for, which
includes, for instance, common
training approaches for health and
legal service providers.
Richard Pearshouse from
the Canadian HIV/AIDS Legal
Network spoke about the limited
role the law can play in the
response to HIV and AIDS. While
impotent to provide prevention,
treatment and care, law can
address human rights abuses
that fuel and drive the epidemic.
Examples of successful legislation,
especially from countries within
the same region, can provide
effective leverage for advocacy.
Lynne Lucy from HEAL
Africa in the Democratic Republic
of Congo (DRC) emphasised
that raped women are survivors
seeking solidarity from the global
community and not victims,
seeking pity. She spoke personally
about the horrendous
scale of rape and
sexual violence in the
DRC. Although the
majority of rapes and
attacks are carried
out by soldiers, she
reminded everyone
that 26% of reported
cases are perpetrated
at the family or
community level.
She called for a zero
tolerance response to
sexual violence at all
levels.
Taking the
different strands of
the discussion, Anne-
Christine d’Adesky
set forth a series of
questions and possible
answers, which spoke
to the various themes the speakers
had raised during the session.
She highlighted the centrality of
the trauma experienced by rape
survivors, often perpetuated by
the services, which are intended
to help – since, with every
step of the way, the experience
may be re-lived. Community
advocates, she suggested, could
be best placed to respond with the
necessary psycho-social
care and access to medical and
legal redress.
Luisa and Sue are from ICW.
…respond with
the necessary
psycho-social
care and
access to
medical and
legal redress…
In Focus…
Rights denials constitute violence…
HIV and gender-based violence
The recognition that sexual violence and rape are significant factors in the growth of the HIV
pandemic, especially in areas of war or civil unrest, has gained momentum over the last 6 years.
Luisa Orza and Sue O’Sullivan
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ALQ incorporating Mujeres Adelante 20Motherhood without discrimination
Esther Sheehama
is the global community doing about it? What action
is the church taking on forced sterilisation, and what
are HIV negative women going to do about the whole
scenario? Doctors who perform forced sterilisation need
to be held accountable, since this policy responds to
mandates from a higher authority.
Tears run down my face almost every night, when
I think that I will not be able to have another child. But
I have to wipe my tears away and speak against the
injustice that happened to HIV positive women, such
as myself. I am sure that there are more women, who
are wiping their tears every night, because they cannot
stand up for their and other women’s rights. No one
wants to be responsible for the damage that was done.
Even women in decision-making positions, who see the
pain we go through, choose to be silent and cry behind
closed doors.
Women living with HIV and AIDS must be
guaranteed respect, dignity, and equality so that they
can enjoy their sexual and reproductive health rights,
including enjoying motherhood without discrimination.
Esther is from ICW Namibia.
HIV impacts on people’s
ability to achieve
their full sexual and
reproductive health
rights and sexual
pleasure. The need to
address sexual and
reproductive health and
HIV and AIDS cannot be
overemphasised.
Sexual and reproductive rights
are founded on the principles
of human dignity and freedom,
and they include that all persons
have the right to sexual and
reproductive healthcare and to
make their own decisions about
their sexual and reproductive
health.
My name is Esther Sheehama.
I am 26 years old, and a Namibian
living with HIV for the last nine
years. I was called names by the
people that I trusted to be in their
care; I was denied my freedom of
expression, when I spoke about
the rights of HIV positive women.
I remember when I gave birth,
the doctor had done a caesarean
on me, and a few months later I
found out that I was sterilised –
without my consent. It happened
just because of my HIV status. The
doctor took away my basic right,
purely because he thought he had
the power to make decisions on
my behalf. Surely, the government
should be held accountable
for what had happened to me,
and other HIV positive women,
who were denied their right to
motherhood.
The virus in us does not mean
we should be unable to have
children, like HIV negative women.
HIV positive women have equal
rights to health and freedom from
discrimination. HIV positive women
and men want to have children.
Many people ask: who will take
care of the children when you die?
We live in a world, where people
die every second from different
ailments and infections, not only
from HIV and AIDS. Why should
someone, who is HIV infected be
different?
Our governments have a duty
to uphold the global commitments
to women’s health and rights
that they have signed. They must
allocate financial resources, put
in place measures to implement
existing laws, programmes
and policies, and put in place
mechanisms to ensure their
enforcement.
The 1994 historic International
Conference on Population and
Development (ICPD) affirmed
that sexual and reproductive
health is a human right that
must be fully enjoyed by all. The
Namibian government recently
agreed to honour the Millennium
Development Goals that address
women’s reproductive health
rights, which are key to promoting
gender equality and development.
The Namibian HIV/AIDS Charter of
Rights prohibits discrimination and
calls for women’s empowerment.
However, the reality for HIV positive
women in Namibia is that they are
not treated equally to HIV negative
women. The issue of forced
sterilisation is a major concern,
particularly for young women,
and should not be ignored. What
Special report
Motherhood without discrimination
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21
Coerced sterilisation
women. As part of its strategy to protect women
living with HIV, Vivo Positivo is training women to
recognise and employ their basic human rights.
As Sara Araya, Gender Coordinator of Vivo Positivo
states,
…the women that are at greater risk are the ones,
who do not know their rights.
What is Vivo Positivo expecting? Redress for
Andrea and all the victims of coerced sterilisation in
Chile. In addition, this organisation has a proposal
that can be utilised in other countries as well – the
creation of a Unit of Assisted Fertilization for women
living with HIV within the health centres.
Ximena is the International Advocacy Director of the
Center for Reproductive Rights, USA.
The story of Andrea is the
story of many women in
Chile, who are sterilised,
without their full and informed
consent. Vivo Positivo, the
leading organisation working
with people living with HIV in
Chile, conducted a study that
revealed the practice of coerced
sterilisation in the country.
This organisation presented
Andrea’s case before the national
courts and the decision is still
pending. If the outcome of
this case at the national level
is not in the favour of women’s
reproductive rights, Vivo Positivo
plans to present Andrea’s case to
the Inter-American Commission
of Human Rights.
In words of Vasili Deliyanis,
director of Vivo Positivo, ‘This case
is landmark for the organisation
and the country’. It has fuelled
a debate on the sexual and
reproductive rights of women
living with HIV. This case also
contributed to the promotion of
a dialogue between government
authorities and HIV positive
women, which addresses the
needs and experiences of these
Special report
Coerced sterilisation: The Chilean experience
Andrea is a Chilean woman living with HIV, who was sterilised, without her consent, while she
was recovering at the hospital after giving birth to her first child. She was 22 years-old and her
reproductive life had ended…
Ximena Andion
At the Harm Reduction Zone of the Global Village, we
interviewed Sam Friedman, of the National Development
Research Institute (NDRI), about his challenging and pathbreaking
research, which shows that arresting hard drug
users does not decrease the number of drug injectors.
On the basis of the data from 96 metropolitan areas of
the U.S. from 1992 – 2002, Freidman shows that increased
arrests did NOT lead to any decrease in drug injectors. If
anything, Friedman commented, increased arrests might
be associated with an increase in drug injectors.
Friedman has already demonstrated in a 2006
publication that, between 1994-97 metropolitan statistical
areas with higher hard drug arrest rates had higher HIV
prevalence among injecting drug users in 1998. Thus, the
major increase in arrests over the past decade may in fact
have contributed to an increase of HIV infection.
For women, this news is particularly significant.
According to Friedman, women drug users make up
approximately 30% of the drug using population, and
are arrested on charges of selling sex, as well as for drug
use. As a result of arrest and incarceration, women are
removed from their households and community and
face the risk of losing custody of their children. Such
procedures are already being challenged by women in
these situations. The new data that arrest does not reduce
drug injection provides a powerful argument against the
punitive procedures now in place, which can destroy the
lives of women, men and their children.
Comment: Arresting drug users…
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ALQ incorporating Mujeres Adelante 22The diaphragm as harm reduction
Sad to say, disdain for the
diaphragm peaked earlier
this year when Nancy Padian
a persistent, but disciplined
believer in the diaphragm,
published the results of the
randomised control trial
she carried out in Southern
Africa.1 Half the women, who
participated in the trial, were
given a diaphragm and (male)
condoms, the others condoms
only. All participants were
followed carefully and counselled
constantly on the use of the
condom. They also regularly
reported on which device they
had been using, if any, at the
most recent sexual encounter.
In the event, analysing the
results by what is known as the
‘Intention to Treat’ procedure (the
gold standard), each group had
become newly infected (and
pregnant) at almost identical
rates.
So, the sceptics concluded
that adding the diaphragm was
not useful. The trial, expensive
and extraordinarily difficult to
accomplish, is regarded as a
failure.
Is it two decades that we
have been searching for
a way to protect women
from HIV infection? For
sex workers, from their
clients? For married
women, from their
roving husbands? And
all we say is: insist he
uses a (male) condom;
or, wait until there is a
microbicide.
The uselessness of these
messages is evidenced by
the number of women newly
infected with HIV, across the
world, each day.
But still we do not make full
use of what we have and know.
Consider the vaginal
diaphragm. The least expensive
of all the devices known, because
a single diaphragm can be used
and re-used for years. Easy
to apply, discrete and barely
noticed by the partner. So why
not recommend it for harm
reduction?
The reason is that, in
these days of evidence-based
prevention, we have no proof
that it will work. For the male
condom, years ago, there had
been a trial of the protection it
conferred – on men – against
gonorrhoea – sailors on shoreleave
were randomised to use it.
For women with the diaphragm,
there is also evidence that reinfection
by gonorrhoea was
reduced. But with HIV, no such
clear-cut protection for either
device has been demonstrated.
However, we do know, from
following the fate of discordant
couples (one infected, one
not) that if both are faithful
and the male condom is used
absolutely consistently, then the
chances that the infection will be
transmitted will be very low.
Perhaps it has been
misplaced sexism that has kept
both the female condom and the
diaphragm from being tested in
similar situations? But also, there
is understandable nervousness
that they give less protection.
But will they give some? Better
than using nothing at all? Harm
reduction?
…easy
to apply,
discrete
and barely
noticed by
the partner…
…perhaps
it has been
misplaced
sexism…
Special report
The diaphragm as harm
reduction!!
Zena Stein and Ida Susser
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But that is an absurd
conclusion. It turned out that
while almost all the (male)
condom group reported they
used that device up to 80% of
the time, the diaphragm plus
condom group reported only
50% use. So how come the
infection and pregnancy data
were the same – try these three
interpretations:
1. Condom use did not
protect.
2. Condom and diaphragm
use (reported by a minority)
is doubly as effective as
condom only.
3. Diaphragm alone is nearly
as effective as condom
alone.
The third interpretation
cannot be proven – you have to
believe that women are reporting
accurately, the protection, if any,
they used in their most recent
sexual encounter. The strength
of ‘Intention to Treat’ analysis is
that the analyst is free to ignore
this information – but sometimes
common sense trumps statistical
so-called rigor. Why do so many
women instructed to use condom
plus diaphragm report they
were using only the diaphragm?
Because that is what they are
doing.
And that would mean that
Nancy Padian’s experimental group
are forsaking the male condom for
the diaphragm – and they are not
harming themselves thereby!
So why, and ask the pundits
this question, should we not equip
and advise women, who have
problems in persuading their
partner to use a condom, to use
a diaphragm – even on the off
chance that it might be helpful,
and certainly could do no harm? No, say the pundits – if
you give a woman an excuse to set aside the condom, a
better established device, she will take the easy way out
and put herself at risk with the diaphragm.
So now it is pseudo-psychology that is keeping the
diaphragm out of sight – how do we know that if she is
unable to persuade her partner to use a condom, she
won’t leave herself without any protection? That will
certainly happen often enough.
So here is our proposal. Every sexually active woman
be fitted with a diaphragm, and trained in its use and
care. She should have it in place before every sexual
encounter. The only exception is when she is confident
that her partner will use a condom – or if she is hoping
to conceive.
FOOTNOTE:
1. Padian, N.S. et al. 2007. ‘Diaphragm and lubricant gel for
prevention of HIV acquisition in southern African women:
A randomised controlled trial’. In: Lancet; 2007 Jul 21;
370(9583):251-61; See also Stein, Z. & Glymour, M.M. 2007.
‘Diaphragms and lubricant gel for prevention of HIV’. In: Lancet;
2007 Dec 1; 370(9602):1823.
Zena is a Professor (Emerita) of Public Health and
Psychiatry at Columbia University.
23
The diaphragm as harm reduction
I believe that at the conference we achieved a greater understanding among civil society and key policy makers
that women living with HIV and AIDS are to be in the position to enjoy their sexual and reproductive rights, without
discrimination. States have the obligation to ensure that women living with HIV and AIDS can make free and
autonomous decisions about their sexuality and reproduction. One of the challenges that we still have ahead is
how to ensure that there are adequate monitoring and accountability mechanisms in place, at the national and
international level, to ensure that governments comply with these obligations.
Ximena Andión Ibañez,
Comment: Making free and autonomous
decisions…
Special Edition – October 2008 ALQ
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HIV prevention and
these international
AIDS conferences have
a funny relationship.
Every two years, tens of
thousands of advocates,
scientists, programme
implementers, and
policy makers troop to
the assigned meeting
place to take stock of
the epidemic. And,
every two years – for at
least the last six or eight
years – there has been
a specific prevention
option that was thrust
into the spotlight by
plenary speakers and
‘sound bite-makers’ alike.
It is a funny thing, because,
while the intervention changes –
vaccines and microbicides have
each had their turn – the pattern
does not. There is excitement,
enthusiasm, a very valid
examination of the utter failure to
deliver existing HIV prevention
strategies to the vast majority of
people who need them on this
planet, and the implied hope that
this new strategy, whatever it may
be, can really help turn things
around.
This time around, male
circumcision for HIV prevention
was under the glare of the
spotlight – although it shared
the stage with treatment as
prevention. (This means a range
of things, including pre-exposure
prophylaxis, the still experimental
use of ARVs to reduce the risk of
HIV infection in HIV negative
people. PrEP bears closer
examination for its implications
for women – and for all people –
than this article will provide.)
There is nothing wrong with
the spotlight, in moderation.
Each new strategy does have a
role – alongside existing strategies – in turning things
around. But it is never as simple as a ‘sound bite’, and
women around the world have been making this point
about medical male circumcision for the past two years.
Contributions from women were also a part of the
story of male circumcision at Mexico City, though not
nearly enough – and not nearly as comprehensively, as
they will need to be to optimise the potential benefit of
medical male circumcision programmes.
Background on the Buzz: Data from Trials of Male
Circumcision for HIV Prevention to Date
In the randomized clinical trials of medical male
circumcision that took place in Uganda, Kenya and
South Africa, men’s risk of HIV infection dropped
by roughly 50 percent after they were circumcised.
This risk reduction was calculated by comparing men
in the ‘intervention’ arm of the trial, who received
circumcision along with condoms, STI treatment
and counselling, with men in the ‘control’ arm, who
received condoms, STI treatment and counselling,
24Cutting through the hype
Reflections…
Cutting through the hype
Take away messages from Mexico City about male circumcision
for HIV prevention and the implications for women
Emily Bass
ALQ Special Edition – October 2008
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but did not undergo surgery. The
studies compared rates of HIV
in the intervention and control
groups, and found significantly
fewer new HIV infections in the
circumcised, HIV negative men.
This is the individual benefit
of the intervention. If male
circumcision for HIV prevention is
scaled-up in high HIV prevalence
areas, where there are low rates
of male circumcision, fewer men
would acquire HIV infection, thus,
reducing the risk of exposure to
their female partners. This process
is termed secondary protection
and it translates into a potential
population-level benefit for the
intervention over the long-term.
Medical male circumcision also
reduces rates of genital ulcer
disease and STIs in men; here,
too, there could be a secondary
benefit for women because these
infections are cofactors for HIV
transmission.
A separate trial in HIV positive
men in Uganda looked at whether
or not male circumcision of
positive men reduced their female
partners’ risk of HIV infection.
Here, there was no evidence of
benefit. There was even some
suggestion, though not conclusive,
that women, whose partners did
not abstain from sex for the four
to six weeks post-surgery needed
to give the wound time to fully
heal, were at an increased risk of
being infected with HIV from their
partners.
Women Have a Say: What
a new, male-targeted
intervention means for us
Is there a role for women
in thinking about how to
introduce and talk about
an HIV prevention strategy
that solely involves men’s
bodies?
The answer is, simply:
absolutely!
Successful introduction of
any new HIV prevention strategy
requires carefully-developed,
context-specific messaging that
addresses the concerns, questions
and roles of all community
members in implementing,
accessing or understanding the
new strategy. (This goes for
old strategies, too, like female
condoms, which are still sadly
inaccessible and under-utilised
world-wide).
It is absolutely critical to think
about women’s concerns and
questions in any communication
about medical male circumcision
programmes. One major concern
voiced by many women is that
communications addressing the
need for continued condom use,
and other forms of risk reduction,
since male circumcision is
partially effective at best, and its
benefits can be off-set by major
changes in numbers of sexual
partners or drops in condom use.
Another major concern
is around stigma: will male
circumcision be viewed as a
‘badge’ of HIV negative status,
and so increase the blame,
stigma and abuse directed at
HIV positive women, who are
blamed for bringing HIV into the
relationship?
It is also critical to think about
how the programmes themselves
communicate: what does it say
if a programme offers services
for men but not for women? Or
if a programme provides medical
male circumcision as a standalone
service, versus a service
that is incorporated into broader
sexual and reproductive health
programmes that meet the needs
of both men and women? What
will it say to men about the need
to use condoms or reduce their
sexual partners, if there is a
permanent surgery, which reduces
their risk of HIV infection?
These and other questions
were raised in June 2008, when
over 30 HIV positive women and
their allies met for a civil society
dialogue on male circumcision
for HIV prevention and the
implications for women. The
meeting, sponsored by the
non-profit prevention research
advocacy group, AVAC, was a companion to a World
Health Organization meeting on the same topic.1
News in Mexico City
The Mombasa consultation on implications for
women took place about six weeks before Mexico City.
What did this conference add to the discussion? Here
are some thoughts, based on the official presentations,
and highly unofficial observations from hallway
conversations and reactions to various sessions.
• The long-term follow up on the trials
confirms, and may even improve on, the
original results – in the trial setting. One of
the questions that women have raised about the
studies is whether or not the findings are valid.
All three of the trials stopped randomisation
early, following the recommendation from an
independent data and safety review board. In
each case, the recommendation was made,
because there was such a strong difference in
the rates of HIV infection between men in the
circumcision arm, versus men who were asked to
wait to be circumcised, that the data review board
considered it unethical not to offer circumcision
to all participants. When a trial alters from
its original plans – in this case, all of the men
enrolled were offered circumcision sooner than
planned – it changes the type of data that are
available.
In a late-breaker, Dr. Robert Bailey who
25
Cutting through the hype
…any new
HIV prevention
strategy
requires
carefullydeveloped
context-specific
messaging…
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helped to run the trial in
Kisumu, Kenya, presented
data up to 42 months, or
nearly 4 years, after the
trial began. The follow-up
data came from volunteers,
who gave new informed
consent to continue being
followed after the data
review board recommended
that male circumcision be
offered to all the men in the
trial. Looking over the full
42 months of follow up, the
rate of new HIV infections
in men circumcised during
the trial was 2.6 percent.
The rate of new HIV
infections in men who
were not circumcised, but
were generally comparable
– including the kinds of
risk reduction counselling
provided, rates of condom
use and numbers of sexual
partners – was 7.4 percent.
The researchers also
calculated the ‘annual
incidence’ – the average
rate of new HIV infections
per year in the circumcised
and uncircumcised groups.
They were 0.77 percent and
2.37 percent, respectively.
This translated to a
65% protective effect of
circumcision against HIV
infection.
These long term data
add additional credence
to the already-strong
information on the risk
reduction from male
circumcision in the context
of clinical trials – where
there is behaviour change
counselling, STI
treatment, and condom
provision.
• Cultural adaptation is
feasible – and necessary.
Dr. Frederick Sawe of the
Kenya Medical Research
Institute presented on a
programme that aimed to
integrate medical aspects
of male circumcision
into traditional practices.
This area of exploration
is critical, as medical
male circumcision for
HIV prevention is being
introduced, or considered, in
many settings, where there is
also traditional circumcision;
messages about how
male circumcision may
reduce HIV risk for
men during vaginal sex
must be integrated with
messages and rituals around
traditional circumcision.
There continues to be a
great deal of confusion
and misinformation about
the distinction between
traditional and medical male
circumcision – terms that are
used to distinguish the types
of training, tools and
surgical techniques used
to perform circumcision.
In Sawe’s programme,
…medically trained
clinicians are brought
from health care
facilities to the village
and incorporated
into circumcision
ceremonies aiming
to maintain tribal
culture (but reflecting
awareness of adverse
outcomes associated
with traditional
circumcision)…
Of note, many women expressed interest
and were included in the trainings on male
circumcision and prevention – an interesting,
though preliminary, example of how introduction
of male circumcision can be used to increase
women’s input and leadership in HIV and sexual
and reproductive health programmes.2
• Questions about rates of risk behaviour
remain unanswered and must be closely
followed – The Kisumu, Kenya trial team
delivered a presentation on the effects of adult
male circumcision on sexual behaviour and
sexual function that provided some important
information on how male circumcision
affects men’s behaviours, like condom use
and numbers of sexual partners over time.
The abstract (available on-line at AIDS 2008)
focuses on men’s reports of sexual function
and sensitivity – which were comparable in the
circumcised and uncircumcised groups. Other
data reported included that one-quarter to
one-third of circumcised men reported having
sex more often than prior to circumcision and
the same proportion saying that they have less
sex since circumcision; and approximately
one quarter of men reported that they had not
used a condom since surgery. Roughly the
same proportion of men also reported feeling
‘somewhat or much more protected’ from HIV
and other STIs.
26Cutting through the hype
…it is
absolutely
critical to think
about women’s
concerns…
…there is
nothing wrong
with the
spotlight, in
moderation…
ALQ Special Edition – October 2008
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These data should
be interpreted somewhat
carefully: for example, the
data on condom-use postsurgery
as presented did
not incorporate information
on how many of those men
had had sex since surgery:
the low rates of condom use
could have been in men who
had not had sex. There also
was not any information
about whether the men, who
were not using a condom
post-surgery, had been
using condoms consistently
pre-surgery; and there was
not any data on whether
or not the men, who were
having sex more often, were
also using condoms more
often, or whether they had
increased their numbers of
partners.
Even so, it is absolutely
critical that policymakers
and programme
implementers pay careful
attention to, and act
on, the implications of
findings – again from a
clinical trial where the
messaging and followup
is arguably far more
intensive than it will be in
the ‘real world’. Women
have consistently raised
concerns about shifts in
rates of risk behaviour. As
Nic Lohse from UNAIDS
argued in a presentation
on modelling the impact
of male circumcision,
these shifts may have to
be very significant to offset
the protection for men.
However, this is only part
of the story. As women said
in Mombasa:
…understanding how
MC affects women’s
ability to negotiate
if, when and how sex
happens is absolutely
essential to making
these programmes
work.
• There are many voices
within the ‘women’s
community’
A lot of conversations
in Mexico City happen on
the fly – we were all racing
from one session to another,
and – at least in my case
– always late. The day that
AVAC and ATHENA cohosted
a discussion on male
circumcision in the Women’s
Networking Zone, I handed
a flyer to a colleague who
has been working on sexual
and reproductive health
rights for many years. ‘Come
talk about male circumcision
for HIV prevention’, I said.
‘Male circumcision’, she
repeated, looking down
at the flyer in my hands.
‘I’m against it’. She kept
walking.
This kind of deep
scepticism and concern is
one thread of the women’s
response. It is rooted in
our history with vertical
approaches and ‘silverbullet
mindsets’ about other
prevention and family
planning strategies.
But it is a grave mistake
to assume that women
are all, or even mostly,
opposed to medical male
circumcision. The statement
from the Mombasa Civil
Society group stated:
We need prevention and
treatment programmes
that work for women
and thus accept male
circumcision as part
of a comprehensive
package of prevention,
care and treatment.
We ask that resources
not be diverted
from prevention and
treatment efforts that
work (condoms, female
condoms, diagnosis and
treatment of sexually
transmitted infections
and HAART and OI
treatment) and that
these be continued to be
scaled up.
This statement cuts to the core of what
has to happen for medical male circumcision
programmes to be a success by any of several
measures that should be used to gauge the
utility of these programmes: safety, reduced
rates of HIV in men, reduced numbers of
sexual partners post male circumcision,
consistent or improved condom use, improved
sexual and reproductive health services for
women and so on.
What is of gravest concern, and where many
women are in the vanguard of strong opposition,
are vertical programmes that aim to provide
circumcision on a large-scale relatively rapidly
without integrating any of the other components
listed above. While Marge Berer did not mention
the Mombasa Civil Society statement, she was
emphatic and eloquent on this point in her talk in
the session To Cut or Not to Cut.3
FOOTNOTE:
1. To download the meeting report and other background
materials, please visit www.avac.org
2. The PowerPoint slide is available on the AIDS 2008 website
3. Webcast and transcript available at the Kaiser website.
Emily is the Programme Director at the AIDS Vaccine
Advocacy Coalition (AVAC).
27
Cutting through the hype
…a grave
mistake to
assume that
women are all,
or even mostly,
opposed to
medical male
circumcision…
Special Edition – October 2008 ALQ
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ALQ incorporating Mujeres Adelante 28Want something for women, say women
HIV and gender equity
advocates convened
in the Women’s
Networking Zone this
morning for a critical
dialogue on the
meanings of ‘gender’.
Since its introduction
into developmentspeak,
‘gender’ has
often faced the same
fate as ‘women’ – either
being side-lined as
an area which is of no
interest to groups or
organisations that do
not specifically work
on women’s issues, or
being responded to
with so-called ‘gender
fatigue’ from people,
who are ‘bored of
hearing women bang on
about their problems’.
Yet, more recently, the
politics of HIV and development
work have resulted in ‘gender’
becoming a ‘must-have’ in HIV
programming and responses,
and the word has begun to lose
its political impact, and have
its analytical uses obscured.
Suddenly, we are facing a situation
where ‘gender’ may refer to
any number of different groups,
including men-who-have-sex-withmen
(MSM), transgender groups,
sex workers, LGBTI (lesbian, gay,
bi-sexual, transgender, intersex
people), and other sexually
marginalised groups – most of
which also include women, but do
not refer specifically to women, or
their positions within such groups.
‘Gender’, once marginalised as
being specifically about women,
is now everywhere, but has been
stripped of its analytical use.
Women have become obscured
within its multifarious uses and
meanings.
If you inadvertently use the
‘G’ word when you mean
‘women’ this will steer
policy and action away from
women and girls.
[ICW staff member]
The last thing ICW wishes
to do by exploring this issue is
to create competition for evershrinking
resources between
different marginalised groups
that now fall under the ‘gender
umbrella’. What we would like to
do is galvanise thinking around
how to pursue HIV positive
women’s specific needs and
interests, without these being
mystified by the imprecise use of
‘gender’.
Women at the session Putting
‘Women’ Back Into ‘Gender’
Politics agreed that there was an
important place for both the words
‘women’ and ‘gender’ – although among some people,
there is still a lot of confusion about what ‘gender’
is all about. Gender does not refer to an individual
or group of people, but rather to complex and fluid
systems, which influence relationships and behaviours
between them. These include who has the power to
make decisions, and who has access to, and control
over, resources.
For example, medical
male circumcision is often
not treated as a gender issue,
because it is not directly
about women. However, as
one participant in the session
pointed out, if a man is
circumcised, who is going
to look after him during the
weeks of recovery period after
the operation? This illustrates
but one way of using ‘gender’
to understand more about the
impact of a particular policy or
programme.
Although there was
confusion or frustration about
women needing ‘to fight’ for
their space, when ‘gender’ is
used as a buzz-word for …
anyone and everyone, the
session ended with one of the
speakers, Alice Welbourn, reminding us that a gender
analysis at the individual and community level, can be
a liberating experience and a powerful tool for change.
So let us use a gender analysis to understand the reality
of women, and others.
However, as argued by Beri Hull from ICW:
…if you want something for women, say ‘women’.
Luisa and Sue are from ICW.
…politics
of HIV and
development
work have
resulted in
‘gender’
becoming
a ‘musthave’
in HIV
programming
and response…
In Focus…
‘If you want something for women,
say women…’
Luisa Orza and Sue O’Sullivan
ALQ Special Edition – October 2008
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orolake Odetoyinbo,
of GNP+, listed many
of them, including:
comprehensive sex education;
access to HAART, STI services,
prevention methods, such as male
and female condoms, affordable
methods of assisted conception;
access to pap smears; research
addressing the effects of HIVrelated
treatments on women’s
libido, sexuality and self-image;
the needs of postmenopausal
women; and the need to
prevent unsafe abortions, treat
miscarriages and provide postabortion
care.
Odetoyinbo noted that
motherhood for women living with
HIV is becoming increasingly
difficult – on the one hand, there
are moves to criminalise perinatal
transmission; on the other,
HIV positive women are often
prohibited from legally adopting
children. She also emphasised,
however, that women should
not only be considered in their
potential role as mothers, but as
persons in their own right.
At the International AIDS
Women’s Caucus session,
Lynde Francis of The Centre in
Zimbabwe stated that many people
still believe that women living
with HIV should no longer think
about sexuality. The assumption
that abstinence should be their
lot may even be internalised
by HIV positive women
themselves, including women
who are educators and advocates.
Acknowledging the right of
women living with HIV to enjoy
their sexuality may be one of the
biggest challenges we still face.
In the Guttmacher session,
Rose Wilcher of Family Health
International presented convincing
evidence that contraceptive use
by HIV positive women can
reduce the number of unintended
pregnancies, prevalence of unsafe
abortion and number of infected
babies. Her plea to include
family planning as an essential
HIV prevention method was
echoed by Anna Miller of the
Elizabeth Glaser Paediatric AIDS
Foundation, who talked about
the advantages of incorporating
family planning into programmes
to prevent perinatal transmission. Miller described
the case of an HIV positive woman, who could not
obtain a safe abortion and who ultimately gave birth
to a third child when she was ill, and without access to
ARVs − she disappeared from the programme and the
worst outcome was suspected. Heather Boonstra of the
Guttmacher Institute spoke about the challenges posed
to integration of family planning and HIV and AIDS
services, especially highlighting PEPFAR requirements.
What was striking about these presentations was
the fact that abortion was seen as a problem to be
overcome, not as a reproductive health service needed
by HIV positive women, who must deal with unwanted
pregnancies. No one discussed what should be done in
cases of failed contraception, while Boonstra noted that
conservatives in the USA are now beginning to equate
contraception with abortion, forming a new obstacle to
the integration of reproductive health and HIV.
It was only at the International AIDS Women’s
Caucus session that Elizabeth Maguire of Ipas said:
…We should not be afraid to say the ‘A’ word −
abortion. Even now, in much reproductive rights
discourse, this issue is often hidden or implied
rather than explicit, seemingly in deference
to those who still refuse to accept it as a vital
part of reproductive health care. … Advocates
should offer a broad vision of comprehensive
reproductive health care that includes, not only
the continuum of contraception, emergency
contraception, post-abortion care, and abortion
care…but also assisted conception for HIV
discordant couples and help with adoption.
Maria is a Senior Advisor at Ipas.
29
Reproductive health needs
…the right of
women living
with HIV to
enjoy their
sexuality may
be one of
the biggest
challenges…
In Focus…
Reproductive health needs of
women living with HIV
The Guttmacher Institute satellite speakers focused mainly on women’s
reproductive health needs
Maria de Bruyn
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In all societies,
people living with
HIV have numerous
challenges, varying
from community to
community. This diverse
reality has not been
perfectly recognised,
and therefore, making
the capacity to deliver
an appropriate HIV and
AIDS response equally
challenging.
As I reflect on my experiences
at the International AIDS
Conference in Mexico City, I
look back and wonder at the
developments that have become
available in the last few years.
I remember my many friends
and kin who died, due to the
unavailability of anti-retroviral
therapy. So far, at least, I am
grateful, because anti-retrovirals
and better nutrition have been
introduced, thus, prolonging
the lives for people living with
HIV. On a personal note, I count
myself alive today, because of the
availability of these developments.
This does not, however, bar me
from being in the frontline of
activism for issues of AIDS, and
the human rights of women. We
have come a long way, but we
still have a long, long way to go! I
would, therefore, contribute to the
loudest of my capacity on issues
that touched on the same. It is sad
to note that many people in the
developing countries die from HIV
and AIDS complications everyday,
due to lack of proper access to
treatment, combined with poverty.
As we all know, the effects of
ARVs without food are terrible,
and many have resorted to
stopping the medicine all together.
It is sad to witness colleagues die
in large numbers due to this. If a
quick and collective solution is
still not found for this, I am afraid
that our communities will continue
to be wiped out as we watch.
What attracted me most to
becoming involved in AIDS advocacy was the active
involvement of people living with AIDS. I had many
questions rotating in my mind, such as – Who should be
more active in the fight against AIDS? Is it the people
living with AIDS or the HIV negative people? I realised
that any response, any level of intervention, prevention,
care and treatment to mitigate the impact of HIV and
AIDS needed the direct involvement of people living
with HIV, at all levels and in all settings.
This belief was strengthened by my attendance of
the Positive Living pre-conference. I cried to see how
much this community, my community, struggled to put
things in place. The importance of HIV prevention was
stressed. Imagine a community that is already affected,
laying strategies on their own, to keep the rest of the
world safe! And, at the same time, pushing hard for bad
policies for this community to be scrapped and replaced
with ones that respected our rights as human beings.
It takes so much more time to prepare presentations,
30 if only someone would listen
Reflections…
If only someone would listen…
Personal reflections
Leah Okeyo
ALQ Special Edition – October 2008
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than a non presenter could
ever imagine – that is for sure.
I remember, how much time I
spent to put my oral presentation
together – Fighting AIDS Under
Fire: HIV Programming in
Conflict with Post-Conflict
Settings. I also remember the many
skype calls and chats with my coauthor,
Anne-Christine D’Adesky,
in the US and I, in Kenya. These
discussions also included Anne-
Christine’s preparation work on a
satellite session on gender-based
violence and HIV. We wanted to
bring the world closer together
here at the conference. We strived
to share with the world what
different communities experience
and how we could come to each
other’s rescue. Many times during
this, and other sessions, it was
noted with much emphasis, that
the lack of respect for women
and girls contributed more to
the spread of HIV and AIDS. In
my country, Kenya, and in many
other countries all over the world,
the struggle for equality between
women and men is still ‘hot’, and
far from done!
The activities at the Women’s
Networking Zone were numerous.
I saw how women, and of course
men, were burning to share their
passions, their experiences, their
needs, and successes, all their
stories, their voices – if only
someone would listen! As part of
these numerous activities, I was
working with women and their
organisations; reaching out for
women and leaders to share their
voices on PulseWire1. Now I feel
a stronger need for women to get
even more forums to put their
heads together, and find strategies
that will finally bring about
change!
My amazement and
disappointment escalated when I
realised the number of countries
that deny entry to people living
with AIDS. I have heard of people
corrupting medical personnel in my
country, so as not to reveal the correct
HIV test results. I tend to think that
such people are more ‘dangerous’,
since they have a big secret to keep in
case they get into trouble. I also feel
that such policies are not practical,
since the same countries allow their
HIV positive citizens to travel to
other countries. I cannot look at
this policy as humane, and I do not
believe that letting HIV positive
people into these countries would
be a favour to them as individuals,
but a favour to the world, in terms
of more participation in building the
global economy. It is also a shame,
when governments respect noise
and protests, more than they do
diplomacy.
Another of my
disappointments was that I
expected to hear fantastic
outcomes that have lately been
discovered by research, towards
the cure for AIDS, or a more
promising life-prolonging drug,
than the ones currently available.
After the conference, I am
equally curious on finding the best
way to present male circumcision
as a means of preventing HIV to
a greater extent. This is, because
many people in my community
are going for circumcision in
large numbers, many not knowing
exactly what is entailed in this.
I am also wondering aloud, if
the organisations working on
medical male circumcision for
HIV prevention could introduce a
strong follow-up system to ensure
that the concepts pertaining to this
are well understood.
So much has been said and
done, but I still advocate for the
following
• The global AIDS situation
needs to be reviewed and
documented
• The need for universal
access to care and treatment
should be treated as an
urgent matter
• International desks should
be availed for all HIV and
AIDS emergencies, since a
problem shared will always
be halved
• Organisations, at the
community grassroots
level, should be looked at
as pillars contributing to strengthen the bigger
organisations
• The legal community should give as much
support as possible to grassroots organisations,
since their progress is always hampered by lack
of sufficient legal advice and funding for the
same.
The legal community could also push, within
their capacity, for ‘successful’ governments to
share their experiences and resources with the
less ‘successful’ ones. Our organisation here has
realised that most drawbacks come from the fact
that the rights of people living with HIV and
AIDS are not respected. Rejection and stigma can
hamper our work to a great extent.
• Networking needs to be stronger within countries
and internationally, so as to roll-out information
on a level ground
• A lot of focus and emphasis has been placed on
gender, but this is not sufficient. The imbalance is
still great, as it concerns education and opportunities.
Women are still looked at as an ‘inferior sex’. This
gap must be bridged, and the full potential of girls
and women must be realised. In the absence of the
woman, the world cannot exist!
• Rural communities should be represented more than
it was done.
I would also wish to bring to the attention of the donor
organisations the fact that communication in our rural
communities is limited, due to a lack of sufficient resources.
We have small organisations with great ideas and who are
31
if only someone would listen
…I realised
that any
response…
needed
the direct
involvement of
people living
with HIV…
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Shawn and Jonah, Jensine Larsen
and all the PulseWire Community,
Karen Zwickert – and making many
new friends and networks.
I stand out tall, over six feet,
usually an attraction. I did not feel
taller, for I realised I was among
fellow giants, all working towards
the same direction. But I enjoyed
the glory of taking hundreds of
photographs at request of fellow
participants, mostly in my African
attire!
I appeal for organisations and
networks to share any available
information and opportunities with
the people at the grassroots. A lot of
success is achieved from the work
at a community grassroots level.
We surely deserve, at the least,
to get feedbacks and information
continuously for upward growth.
Without solutions to problems,
identifying them would have no
meaning in the first place.
The bottom line is: A greater
impact will be realised, if people
living with AIDS participate more in
doing good jobs, but they lack stones
to step on. I remember getting the
conference link about the due dates
from the U.S., and more advice
regarding abstract submissions from
Canada, at a time when organisations
in the big cities were already done
with everything. Something could be
done, so as to enable better linking to
the future.
Life has taught me to make
lemonade, when I have a lemon, and
I know a better recipe than this. It was
fun to be in Mexico City, away from
the everyday life at home, getting
together for dinner with friends every
evening, and meeting many e-friends
and colleagues in person was a
great joy! Speaking Spanish was a
great experience, and the Mexicans’
hospitality is admirable.
Being able to render my services,
in any capacity, was quite a blessing
to me. I am feeling honoured by
getting physical and moral support
from Anne-Christine D’Adesky,
Louise Binder, Leah Stephenson,
Brian Finch, Jenniffer Ruwart and
decision-making, and, especially
in policy-making at the national
and international level. In my
walk as a woman living with
AIDS, I have learned to raise my
voice (many times politely) on
behalf of my community, to see
very bright light in pitch darkness,
and to be able to identify
blessings, even where there may
seem to be none.
Challenges strengthen us
everyday. We should, therefore,
take challenges positively, but not
put up with them. The winds may
blow hard against us, but if we
stand as a force in this course, we
will bring a change in the end.
FOOTNOTE:
1. www.pulsewire.net
Leah is from World Pulse, Kenia.
32 if only someone would listen
…to bring to
the attention
of the donor
organisations
the fact that
communication
in our rural
communities is
limited…
Taking a stand…
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33
Evaluation of the Women’s Networking Zone
Among the specific
objectives collectively
identified by the
Alliance for Gender
Justice for the Women’s
Networking Zone at
AIDS 2008 were to
highlight the work and
leadership of women
living with HIV; engage
with women from the
local community; and
to promote networking
across sectors and
disciplines and between
regions and continents.
The over-arching purpose
of these specific objectives, as
we understand them, was to: 1)
provide a platform from which
to ensure visibility of priority
challenges, emerging issues and
good policy and programming
approaches for women in areas of
the HIV and AIDS response within
the context of the International
AIDS Conference; and 2) offer
a unique conversation that
would empower women through
participation as speakers and
listeners, and strengthen women’s
responses to HIV and AIDS
through geographically inclusive
and interdisciplinary alliance
building. This article evaluates
how the Women’s Networking
Zone contributed to increasing
women’s empowerment by
meeting some of the specific
objectives mentioned, and
considers some of the challenges
experienced in linking local and
global women’s rights activists and
women living with HIV.
The evaluation draws on an
analysis of the sessions held at
the Women’s Networking Zone
(WNZ) and speakers’ profiles,
as well as short evaluations
completed by participants
attending sessions at the WNZ
(n=60) and speakers (n=24), semistructured
qualitative interviews
with individuals who attended
sessions at the WNZ (n=9),
and individual written reports,
completed by Mexican women
living with HIV (n=14).
Greater Involvement of People with HIV
and AIDS (GIPA )
The GIPA principle is defined by the participation
of people with HIV at all stages and levels of
programme and policy
development. From the outset,
a key principle organising the
Women’s Networking Zone
programme was to be guided
by the priorities identified by
women with HIV, with a focus on
Mexico and Latin America, and
to ensure significant participation
of women with HIV as speakers
and workshop leaders. The first
brainstorming for priority issues
was conducted at a local-global
meeting to promote women’s
full participation at AIDS 2008
that was held in Mexico City in
May 2007. The meeting brought
women leaders with HIV from
Mexico and the region together
…a space
where
community
women…
would have
an opportunity
to share their
experience
and have their
voices heard…
Reflections…
Evaluating the Women’s
Networking Zone…
Contribution to Women’s Empowerment and a Global Movement in Women and AIDS…
Tamil Kendall, Elizabeth Shaw, Isabel Arrastia, Hilda Perez, Eugenia Lopez 1, 2
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with activists, who had been
involved in creating the Women’s
Networking Zone at Durban,
Bangkok, Barcelona and Toronto.
In addition to sharing experiences,
and lobbying national decisionmakers
and the United Nations
system for a greater commitment
to women and HIV, this group
generated a list of priority issues
to address at AIDS 2008 that were
then consulted nationally, through
the Mexican network of women
living with HIV, Mexicanas
Positivas Frente a la Vida;
regionally, through ICW-Latina;
and internationally, through
collaborative efforts by ATHENA
and ICW Global. This framework
guided advocacy efforts by
allies in the scientific, leadership
and community tracks of the
official conference programme
committees, as well as forming
the basis for the construction of
the Women’s Networking Zone
programme.
All of the participants, who
completed in-depth interviews
(n=9), considered that there was
strong representation of women
living with HIV in the Women’s
Networking Zone programme, as
is well-expressed in this quote:
…Yes, positive women are
represented and publicly
sharing…
Respondents also considered
that the concerns of women living
with HIV were at the forefront in
the analysis and perspective taken
on the issues during the dialogues
and debates:
…Even though this
conversation [male
circumcision] does not
directly involve them, the
question was brought up
about how this would affect
women living with HIV…
From a descriptive perspective,
the key objective was ensuring that
the Women’s Networking Zone
was a space where community
women, especially women
living with HIV, would have an
opportunity to share their expertise
and have their voices heard was
achieved. The majority of sessions
(75%) programmed in the WNZ
included speakers/co-facilitators,
who were women living with HIV.
Geographical Diversity,
Interdisciplinarity and
Inclusion
The Women’s Networking
Zone sought to promote
networking and sharing of lessons
learned across regions. The
majority (54%) of the sessions
involved speakers from more
than one geographical region:
Africa, Asia, Global North (North
America and Western Europe),
Eastern Europe, Latin America
and the Caribbean, and Oceania.
We also held four regional
dialogues during the week: Women
of Colour from the Global North,
Asia, Africa and Latin America.
Another goal was to bring
together different sectors of
women active in the HIV and
AIDS response in a constructive
dialogue at the Women’s
Networking Zone. The individual
programme evaluations (n=60)
indicated that the WNZ attracted
many women living with HIV, as well as community
women, and provided an inviting environment for
conference delegates from different sectors: 40% of
the respondents said they were women living with
HIV; 28% identified as community activists; 3%
were researchers; 18% were medical professionals;
12% considered themselves decision-makers; 23%
worked in non-governmental organisations; 7%
worked with government agencies; and 5% were
donor representatives (the totals add up to greater than
100% because participants could mark more than one
identification/affiliation).
The Women’s Networking Zone also specifically
reached out to women’s groups that have been
marginalised and silenced in some expressions of
mainstream feminism, and overlooked, to some
extent, in women’s responses to HIV and AIDS – sex
workers, transgender women, lesbian women, drugusing
women, and indigenous women. We sought to
go beyond what may be commonly perceived of as
‘women’s issues’ by inviting women identified with
these groups to participate as speakers in the Women’s
34Evaluation of the Women’s Networking Zone
regional representation of Speakers
28%
Africa
4%
ASIA
35%
LA C
30%
Global north
3% Eastern
Europe
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
Health care professional
Decision-maker
NGO
Government
Donor
Researcher
Activist
HIV +
Participant self-identification
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…reached out
to women’s
groups that
have been
marginalised
and silenced
in some
expressions of
mainstream
feminism…
Networking Zone and by framing
the promotional materials for the
WNZ to include women, who are
frequently excluded, for example
by explicitly including transgender
and sex worker women.
That this type of inclusion
is unusual was specifically
mentioned by several speakers,
including one of the sex worker
activists who participated in
the dialogue on sex workers
living with HIV at the Women’s
Networking Zone. We believe
that overcoming marginalisation,
invisibility and stigmatisation
of vulnerable women within the
women’s movement in the context
of HIV and AIDS is crucial for
strengthening our responses. These
initial contacts and tentative first
steps can be considered one step
in the right direction, while future
alliance building should go even
further.
The WNZ was successful in
creating dialogue and workshop
spaces that included women from
many regions in terms of speakers,
but only partially successful
in involving participants from
different regions. There was
a particularly marked divide
between ‘international’ sessions
and ‘local’ sessions:
…I felt like when there
were dialogues with
international speakers it was
an international audience,
and when there were local
speakers, Spanish speakers,
it was mostly Spanishspeaking
participants. I
think the kinds of dialogues
were diverse but the
participants were not…
Language and geographical
divides persisted despite offering
simultaneous translation from
Spanish to English and vice versa
in all sessions. The evaluation
team observed that when one of
the speakers/co-facilitators spoke
in Spanish, Mexican women
were more likely to participate
and ask questions. Mexican
women living with HIV reported
that the continuous availability
of simultaneous translation in
the Women’s Networking Zone
encouraged them to spend
more time at the WNZ, than
in the main conference, where
the predominance of English
sessions limited their learning and
interaction. Future programmes
might try to match international
speakers with presenters from
the host country or region, and to
encourage bilingual or trilingual
facilitators to use the language
that is being used least frequently
on the panel to encourage
participation.
Dialogue and Networking
The Women’s Networking
Zone sought to foster dialogue
between facilitators and
participants. The individual
evaluations (n=60) indicate that
women were engaged by the
facilitators and felt comfortable
sharing their opinions and
experiences at the WNZ. Specific
spaces for networking were
created physically (a lounge area)
and in the programme (coffee
in the morning, cocktail in the
evening). Most participants who
completed in-depth interviews
said that they did carry out
networking activities, and one
considered that
…it would take an
immensely shy person not to
network. The space was provided.
One woman did comment that the physical space
was not adequate for networking:
…Not really: it was really noisy; too spread out
space; space and sound made it a challenge to
network.
Other informants noted that initially, participation
by women from the Global South was limited. Another
participant noted that while translation overcame
the language barrier with respect to speaking about
HIV, language was still a barrier to getting to know
other women personally, and creating the kinds of
relationships that can lead to ongoing collaborations.
In terms of sustainable, virtual linkages, the
WorldPulse Media Lab provided a forum for women to
continue to register on an international internet- based
network, which will allow women to continue to work
together. A participant noted:
…WorldPulse – that whole technology is to
network on the international level.
While we heard that internet-based education
and organising has been effective in some rural
areas in Africa, for example Kenya, our experience
in the Mexican context has been that web-based
communication and organising have not been very
effective, because many community women do not use
email regularly even after learning how to do so.
From our experience coordinating national
outreach from the local host organisation, we identified
communication challenges to linking the local with
the global and promoting local women’s participation.
While it is essential to work in the local language,
as well as in English to promote local and regional
women’s participation, multiple languages are
challenging in terms of the amount of communication
work it creates (translation) and limiting the ability of
monolingual activists to connect. This communication
35
Evaluation of the Women’s Networking Zone
…this type of
inclusion is
unusual…
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challenge was exacerbated
by the centrality of internet
communication for international
organising and increasingly
short turn-around times as the
conference approached. In
this context, the initial faceto-
face meeting held in 2007
to develop thematic priorities
and build relationships, and
the extensive national, regional
and international consultation,
feedback and validation that took
place over a period of months were
absolutely essential for providing
a framework and principles within
which smaller working groups
could make decisions.
These consultations and
processes of outreach were also
important for creating a sense of
local ownership, but ultimately
this latter goal was only partially
achieved. Our analysis suggests
that this is largely due to the
huge experience and knowledge
gaps between local women –
who may never have attended
a conference before, let alone
participated in decision-making
about the construction of a
programme taking place within
an international conference, and
do not use the internet regularly
– and the understandings and
communication practices of
activists, who are engaging with
international advocacy as part of
their everyday realities. As local
organisers we emphasise the
need for increased mentorship by
women, who have experienced
other conferences, and other
Women’s Networking Zones to
strengthen the participation of
women who are involved for
the first time. This mentorship
must reach across and
overcome differences in culture,
language, access to information
technologies, HIV status, ethnicity,
occupation and knowledge of
the scientific methodologies that
dominate the formal structures
of the International AIDS
Conference. Even greater efforts
must be made to invite the voices
of local women with HIV, so
that the experience for greater
numbers of women is not only
learning, but also sharing and
teaching.
Unique Conversations
and Contributions to
Women’s Empowerment
The Women’s Networking
Zone sought to host a ‘unique
conversation’ that involved
women who were not taking part in the formal
conference proceedings, and to provide a forum for
issues and perspectives that might be missing from the
main conference programme. Participants in in-depth
interviews noted that in the WNZ they
…heard about themes that are not talked about in
the main conference…[and that they]…came to the
WNZ to get some gender perspective…
The existence of a full programme of events at the
WNZ was considered key for creating this unique,
multidisciplinary discussion that involved women from
different sectors of the response to HIV and AIDS, as
well as from different parts of the world:
…The formal [WNZ] programme successfully
brought information down to the grassroots
level, to the local community. Although the space
around was kind of crazy, it was semi-formal. It
could have been local women with HIV ‘stand up
and share your story’. But it brought scientific
information and debate and dialogue in addition
to the sharing of experiences…
By providing this unique, multidisciplinary
space, the women interviewed felt that the Women’s
Networking Zone contributes to women’s empowerment
in the response to HIV and AIDS. Specific aspects that
were identified included disseminating information
and providing a space for networking and sharing
experiences between advocates and activists from
different cultures and countries. The discussion that
takes place at the Women’s Networking Zone:
…allows for change in approaches as needed,
an opportunity to share with others and get
feedback…
Women identified dialogue as critical for the
36Evaluation of the Women’s Networking Zone
…overcoming
marginalisation,
invisibility, and
stigmatisation
of vulnerable
women within
the women’s
movement…
is crucial for
strengthening
our response…
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alliance building and debate that
can catalyse and support processes
of empowerment:
…Anytime women get
together to talk about
issues, this contributes to
empowerment; you can
think by yourself, but this
creates needed dialogue and
disagreement…
Another aspect of the
WNZ that was identified by
participants as promoting women’s
empowerment was the fact that
women create the agenda, and
are the majority of speakers and
participants:
…Definitely, women are
those who represent, live,
speak about and share their
perspectives in this space…
The experience of belonging
and comfort in the Women’s
Networking Zone was contrasted
with the sterility and impersonality
of the formal conference
programme:
…I felt like an individual
in the big conference and
in the Women’s Networking
Zone, I felt I belonged to a
community…
The old adage ‘the personal is
political’ seemed to provide one
of the foundations for women’s
empowerment at the WNZ:
…It speaks to our issues on
a personal level and gives
us options for political
organisation…
Contributing to a Global
Women’s AIDS Movement
The need to build linkages
between HIV and the women’s
movement was a recurrent theme
in the Women’s Networking
Zone discussions and several
sessions directly tackled the
issue of whether or not there is a
global women’s AIDS movement.
Overall, in many countries and
internationally there continues to
be a gap between women working
in HIV and more traditional
feminist and women’s rights
movements. There are very few
HIV organisations that work
specifically on issues of women
and HIV. One speaker noted that
there
…is an elitist feminist
movement that doesn’t
fight against AIDS because
they don’t acknowledge the
feminisation. If you are a
feminist and claim to be
fighting for women’s rights,
you should be fighting AIDS,
because gender inequity
makes women vulnerable
to HIV…
While collaboration was
expressed as a goal and some
good practices were identified,
for example, feminists and HIV
activists working together to
respond to gender-based violence
in Brazil, yet frequently, women
with HIV and feminists seem to
be working at cross-purposes. For
example, one of the issues that
emerged from the Dialogue on
Women and HIV in Asia is that
women’s
groups in
the region
have vociferously promoted laws
that criminalise the transmission
of HIV as a means of ‘protecting’
women from HIV infection.
However, the experiences of
women living with HIV from
Asia, Africa and the Global
North, shared throughout the five
days of sessions, illustrate that
criminalisation does not protect
women, but rather makes the
most vulnerable women, such as
women living with HIV, women
who suffer gender violence, sex
workers and injection drug users, more vulnerable to
violence, incarceration, and stigma.
The Women’s Networking Zone self-consciously
sought to bring together women working in HIV with
women working more broadly for women’s rights.
Indeed, this bridging is an explicit goal of the ATHENA
Network, a member of the coalition that convened
the WNZ, and an implicit objective of other coalition
members. At the macro level of organisation we can
see how the linking of broader women’s movement and
women with HIV was achieved during AIDS 2008 – for
example, by looking at the speakers at the International
Women’s March. The speakers were women living with
HIV of different ages and from different regions of the
world, a representative of a large, mainstream women’s
organisation (the YWCA), the head of a government
women’s programme, a well-known Mexican feminist
activist, and national and international artists. At an
intermediate organisational level, we can appreciate
37
Evaluation of the Women’s Networking Zone
…there
continues to be
a gap between
women working
in HIV and
more traditional
feminist and
women’s rights
movements…
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how dialogue and getting to
know more about the realities
lived by other women and the
objectives of their struggles,
both formally in the Women’s
Networking Zone programme
and through informal networking,
can contribute to joint advocacy
agendas. It is our opinion that
the inclusion of women with
HIV, and other affected women,
in shaping the agendas of the
local, national and international
women’s movements is crucial,
and we feel that the WNZ at
AIDS 2008 made a significant
contribution in this regard through
enacting GIPA principles and
including marginalised and
vulnerable groups of women in the
programme, while also including
organisations that work more
broadly in the field of women’s
health and rights.
Concluding Reflections
This evaluation suggests that
the Women’s Networking Zone
was successful in advancing
the meaningful participation
of women, especially the most
affected women, within the context
of the WNZ and the conference.
The large numbers of speakers
and participants, who were women
living with HIV, demonstrate the
strong focus on the leadership of
women living with HIV and the
actions that they are spearheading
in the community. Mentorship and medium-term
relationship building are needed to further support local
women with less experience in international organising,
to participate fully.
The Women’s Networking Zone at AIDS 2008
also made important progress in reaching out to, and
including, vulnerable groups that are often marginalised
in the women’s response to HIV and AIDS, such as
sex workers and injection drug users. The profile
of the participants who completed evaluations
demonstrates that the WNZ was an inclusive forum,
where community members, advocates, policy analysts,
decision-makers, service providers and researchers
shared and learned together. Participants felt that the
Women’s Networking Zone provided a welcoming
space and substantive programme that promoted
multisectoral dialogue and women’s empowerment.
FOOTNOTES:
1.Tamil Kendall1,2,3 Elizabeth Shaw1,2,4 Isabel Arrastia1,2,4 Hilda
Perez1,2, Eugenia Lopez1,2
(1) Balance. Promoción para el juventud y desarrollo, AC.
Mexico City, Mexico; (2) Alliance for Gender Justice at AIDS
2008; (3) University of British Columbia, Kelowna, BC;
(4) Loyola Marymount University, Los Angeles, CA.
2.We would like to thank Maria de Bruyn, Luisa Orza and Tyler
Crone for their input on the initial evaluation instruments and
UNIFEM-Mexico and UNFPA-Mexico for their ongoing support.
Tamil is a Co-Coordinator of
the Alliance for Gender Justice.
38Evaluation of the Women’s Networking Zone
…offer a
unique
conversation
that would
empower
women through
participation…
This Global Village really engaged the power
of collaboration and culture. The Global Village
was, in and of itself, an expression of how ‘powerful
culture’ is as an expression of our human potential
to create a new world. Culture can also powerfully
bring people together to create a new world in new
ways, especially women from all walks of life, who
are leading the way in imagining and creating a new
world of equity, justice and inclusion.
Betsi Pendry,
The Living Together Project, South Africa
Comment: The power
of collaboration
Activists need to expand the rolling-off-the
tongue term ‘stigma and discrimination’ – it is too
narrow a framework and it does not name more of
a range of violations that our movements are already
doing advocacy on, including violence. And because
it omits the term ‘rights’, it misses the opportunity to
use language of accountability. Activists should be
better suited advocating for ‘stigma, discrimination
and other rights violations’. That says more of what
we mean, and it implies that people have rights to
make demands from the state.
Cynthia Rothschild, USA
Comment: Omitting
the term ‘rights’…
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things they would not be able to;
women talk with their husbands,
and with each other. We create
the stories ourselves, from our
lives and the women we work
with. Our stories have an ability
to show hard, painful things,
without being insulting, it can
be like good family jokes. How
we are on stage shows others
that they can perform too, they
can also laugh, have pleasure
and enjoyment in life, learn to
laugh at life, as well as struggle
to change it.
We learned from the best,
Tito Vasoncelos and Jesusa
Rodriquez. They taught us that
it is possible to not only create
the stories that we wanted to
tell, but to tell them in ways
that are sexy, powerful, fun
and bring politics and pleasure
together for both the performers
and audience.
FOOTNOTES:
1. Reinas Chulas is a partner
organisation of the Women’s Networking
Zone and the Cultural Networking Zone.
Reinas Chulas, a
group of four women
performers, has been
together for over
ten years. We started
together as theatre
students and decided
to move in our own
direction, after it was
clear that the ‘beautiful’
girls move onto TV,
and the ‘smart ones’ go
into serious theatre.
We did not want to
accept either of those
categories for who we
were, or for the kind of
theatre we could create;
so we looked for other
models that would give
us more freedom and
would be fun.
We also wanted to do a kind
of theatre that did not just relate
to our audiences, or ourselves as
just ‘big heads’, as we believe
that, if we do that, we miss out
on our souls, and our pleasures.
Our heads are just one part of
us. My knees are a part of me
too; they are where my humour
is. My inspiration is in my
shoulders. My whole body is
an expression of who I am as a
woman, in my culture, with my
education, and in my soul. So
we began to do satire, as it was
more expressive of all of who
we are, and allows the same
thing for audiences too.
We wanted to be able to
share this experience and view
– that we need to work hard, but
we also need to be able to laugh
and enjoy life, and that is what
culture gives us.
Laughter is like an orgasm,
it is a full body experience; it
allows you to express many
things at once. We wanted to be
able to tell our stories, that of
ordinary Mexican women, who
work hard; struggle; have kids
and husbands and not enough
money; experience the injustices
of our systems; and also give
our audiences a chance to laugh
and feel their own power and
dignity. Being on stage gives
stories the dignity and respect
they need, especially stories
that are ignored or disrespected
by the rest of society, it gives
the audience a chance to see it,
and relate to fellow audience
members in a new way.
Satire and laughter help
audiences, especially women,
to have different responses
to the stories of our lives, we
see changes in our audiences,
because of the satire and
humour. Families talk about
…we looked
for other
models that
would give us
more freedom
and would
be fun…
…laughter
is like an
orgasm, it is
a full body
experience…
In my opinion…
Telling stories…
Ana Francis Mor, Actor and Director, Reinas Chulas1
39
Telling Stories
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The Indigenous Zone
of the Global Village is a
place for the indigenous
populations of the world
to express sisterhood
and brotherhood. Four
women – from the
North in Canada, to
Mexico, and down to
Chile and then West
across the ocean to
New Zealand – came
together to share their
experiences, and one
theme came with them
– We need a voice!
Each of the women spoke
to their nation’s experiences
of colonialism and the painful
legacies that we, as indigenous
women, live with. The rape of
our land and cultures continues to
affect our communities. HIV is the
latest of these ‘unnatural attacks’
on our harmonies; and it is moving
fast into our communities. For
example, the rate of HIV among
indigenous women in Canada is
60% of all new HIV infections
among the indigenous population,
which are 22% of all new HIV
infections in Canada, while
the indigenous population only
accounts for approximately 4% of
the entire population.
Doris Peltier’s voice could
probably be heard screaming
‘NO!’ – not only across the Global
Village, but out to the world and
back to Canada, where she came
from. She found her voice, when
she was 90 pounds and refused
admission to a hospital in Canada.
She would not accept their answer
and screamed ‘NO!’ – and then
was admitted to the hospital. In
so doing, saving her own life and
creating a voice, by example, for
many women.
Marina Carrasco of Chile
spoke to the need to find other
positive women to speak to,
and network with, in Chile. She
asked: where is the movement for
human rights for indigenous
people and, particularly for
indigenous women? She
also stressed that we need to
recognise the connections for
all of the advocacy calls and
networks, including movements
and initiatives advocating for
equality, for human rights,
for indigenous peoples rights,
for the rights of people living
with HIV and AIDS, and for
women’s rights.
Eva Gomez Santiz Lopez
of the Chiapas in Mexico
expressed the need for
indigenous women to not only
have a voice, but also a space to assert themselves, as
generally men have social and cultural power in their
relationships. The lack of knowledge and education
around sexual health and rights is overwhelming, but
women are starting to talk to other women, and the
next generation.
Marama Pala of New Zealand started with a
traditional song. She expressed a heartfelt thank you to
the sense of sisterhood and being able to talk about her
experiences of living with HIV, especially since when
she is in her homeland, there is ‘no space to talk about
it’. Her fervent wish is that she is able to continue with
the support that she received during the conference,
when she gets back home.
Whilst our experiences, as indigenous women of
the world, are unique, we share many similar histories.
We are living on our ancestral homelands, with a whole
new culture and medium that is not our own. As such,
HIV is not going to stop us from uniting with, and
bringing together, other sisters to the ‘fight’ against HIV
and AIDS.
We have survived many epidemics and colonisation.
And now, that our voices are together, we are
even stronger.
Doris is the Outreach Worker for the Ontario Aboriginal
HIV/AIDS Strategy, Canada.
40We need a
voice
…we need to
recognise the
connections
for all of the
advocacy calls
and networks…
In Focus…
We need a voice!
Doris O’Brien Teengs
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41
Lesbian women are often invisible
term negative consequences, both medical/health and
social consequences, for individuals subjected to
these forms of rights violation and abuse. As a result,
concerns and fear of homophobic attitudes often
lead to a situation of delaying or avoiding seeking
healthcare.
There also seems to be an implicit assumption
that ‘overlooking’ the protection of human rights will
reverse the pandemic. However, the solution to the
HIV and AIDS pandemics are not as simple as making
every person test for HIV and disclose their status.
The AIDS pandemic is highly complex and requires
deep-rooted and long term societal changes, such as
gender equality, freedom of expression, and an end to
poverty and hate. Ignoring this in a short-term will only
delay reversing the pandemic,
cost more money, and, most
importantly, more lives.
The fact that lesbian women
are often ignored needs to be
part of the agenda. There is
a need to develop a deeper
understanding of lesbian
women’s realities and needs. In
order to alleviate discrimination
and all related hatred, and most
of all ignorance − all of which
increases lesbian women’s HIV
risks. Discrimination and all
related hatred is not a matter
of individual attitudes per se, but instead it is a matter
of an institutionalised system of power and control
over people’s sexual orientation, gender identity and
ethnic diversity. As such, eliminating discrimination
and homophobia needs to become a priority and
responsibility of every woman, and not only a concern for
lesbian women.
While there is a need to highlight the importance of
interventions responding to especially lesbian women’s
HIV risks and vulnerabilities, there is also the urgent need
for women’s rights discourses to become more inclusive
of lesbian voices.
‘Steve’ is the Sexual Health and Rights Coordinator of
OUT LGBT Well-Being, South Africa.
Often women’s sector
discussions, caucuses
and conferencing are
discriminatory, due to the fact
that a certain group of women,
who prefer same sex, are neither
accommodated nor recognised in
topics and debates. Why?
I believe there is a certain level
of incompetence amongst
many people dealing with,
and addressing women issues,
specifically issues that affect the
lives of lesbian women, issues of
HIV and AIDS, gender and sexual
orientation and human rights.
Although these issues affect
women the most, interventions
to address these often exclude
lesbian women.
For instance the South African
Constitution, much applauded
and celebrated, recognises the fact
that the dignity of the individual
is both an objective that society
must pursue, and it is a goal which
cannot be separated from material
well-being of that individual. Yet,
the sexuality of lesbian women
and their relationships have
continuously been de-prioritised
and trivialised, both in public and
scholarly discourses, with limited
studies undertaken in these areas.
However, contrary to prevailing
perceptions, some studies are
emerging that suggest lesbian
women do indeed test positive for a
number of STIs, including HIV.
Although international studies
have shown that identified lesbian
women are at low risk, this does not
necessarily apply to South African
lesbian women, as sexual practises
of lesbian women do not make
them immune from contracting
HIV and other STIs. In addition, high
levels of gender-based violence
and hate crimes directed at lesbian
women, particularly in South
African townships, increase their
vulnerability to HIV infection.
Lesbian women’s health is often
‘invisible’ in most of the debates,
with the result that lesbian views
are not included in decisions about
how to address inequalities in the
healthcare sector. Highlighting
the diverse range of health issues
affecting lesbian women will further
provide valuable evidence for policy
makers, practitioners, community
groups, and others – ensuring that
all lesbian women’s realities and
needs are included in future health
and education service planning.
A wide range of research papers,
policy and practice documents
from international sources have
been reviewed – indicating that
many LGBT people are likely to
experience health inequalities,
or social exclusion, as a result of
prejudice and discrimination. These
factors are likely to affect individuals
differently – depending on age,
class, disability, gender, ethnicity
and social circumstances – while
there are common experiences
and barriers for accessing adequate
healthcare services. Limited and/
or denied access to healthcare is
not only a violation of rights, but
also constitutes a risk to lesbian
women’s health. In addition,
incidences associated with
homophobia and hate crimes,
including rape, have serious, long-
Special report
Lesbian women are often ‘invisible’…
It is not about identity crisis, nor clarifying the gender presentations. It is about recognising the difference and
representing the broader voices and rights of all women, including the lesbian women around the globe.
Mmapaseka ‘Steve’ Letsike
…discrimination
and all related
hatred…is
a matter of
institutionalised
power and
control…
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Jovesa reflected on
this phenomenon; he
sees the success of the
series as an indication of
the value of fostering and
enabling environment for
public discourse. Creative
communication strategies
are instrumental in
stimulating positive public
exchange.
However, he also
underscored the value of negative responses to HIV
messaging strategies:
…at least we know people are active…and then
we know that people are beginning to talk, and
formulating a response…
Behaviour change communication practitioners
should be alert when such a response takes place,
as these are the moments determining next steps in
developing responsive strategies.
Rachel is a member of the ATHENA Steering Committee.
Walking through the
Global Village, I found
myself drawn into the
leafy palms, colourful
pillows and cosy straw
mats of the Pacific.
There I met Jovesa
Saladoka and Robert
Verebasaga, who invited
me into their tropical
environment.
Robert Verebasaga represents
the region’s comprehensive intergovernmental
effort, the Pacific
Regional Strategy on HIV/AIDS.
Robert described the Regional
Strategy, expanded for 2009 –
2013, which constitutes the 26-
member countries’ framework
for ensuring coordination and
priority-setting. Harmonisation
and minimising duplication of
resources and efforts are key
challenges for a region composed
of island nations stretching over
thousands of miles.
Challenges notwithstanding,
Pacific Islanders are eager for
the international community
to recognise them in the global
epidemic. When asked about his
goals at the Mexico conference,
Jovesa Saladoka identified the
importance of showcasing the
Pacific Region’s isolation from
the global community. While the
Region may represent a small
fraction of the global epidemic,
it demands the same attention
– ‘We are just as vulnerable as
everyone else’ – he commented.
Talking about the Region’s
successes, Jovesa, a behaviour
communication specialist at
the Secretariat of the Pacific
Community’s HIV and STI Section,
lauded the popular ‘edutainment’
TV series Love Patrol. A popular
theatre company, called Wan
Smolbag, worked with the Pacific
Regional HIV and AIDS Project to
develop the mini-series, which
was fantastically received.
42Pacific Islanders
…harmonisation
and minimising
duplication of
resources and
efforts are key
challenges…
In Focus…
Pacific Islanders make waves
Rachel Yassky
…the value
of fostering
and enabling
environment
for public
discourse…
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43
HIV and women who inject drugs
of injecting drug use were found
to be 50% less likely, than other
women, to receive PMTCT.
Healthcare providers continue
to stigmatise or reject women
drug users, and few programmes
have staff members who reach
out to those who are reluctant to
see a doctor, or whose addiction
has made the threshold to access
too high. There are few links in
most countries between women’s
health services and substitution
treatment with methadone and
buprenorphine, depriving women
of essential support in managing
their addiction and achieving
better health outcomes. In Russia,
substitution treatment is simply
illegal. In Russia and Ukraine, a
diagnosis of drug addiction is
legal grounds for loss of custody,
creating a perverse disincentive
to seek care. Women who enter
inpatient rehabilitation must
leave their children with a family
member or friend, and are often
not in a position to regain custody
when they come home. Around
the world, many rehabilitation
centres do not even accept
women, especially when they are
pregnant and/or HIV positive.
Meanwhile, there are all too
few programmes that give drug
In addition to the
discrimination and health
risks associated with injecting
drug use, women who inject
drugs face gendered inequalities.
In countries as diverse as Ukraine,
Kyrgyzstan, Indonesia, Morocco,
and the United States, growing
numbers of women drug users
experience similar problems. They
are often dependent on men
to help them obtain, prepare,
and inject drugs, and to protect
them from violence on the street;
unfortunately, this protection
often comes along with domestic
violence and a partner’s refusal
to wear a condom or to avoid
sharing needles. Some men even
prevent their female partners from
visiting harm reduction sites or
entering drug treatment. Studies in
a number of locations have shown
that women, who inject with men,
often inject last and with a shared
needle. Many women drug users
rely on transactional sex to survive,
and financial desperation, stigma,
and ill health force many into the
most dangerous and poorly paid
types of sex work. Harsh drug
policies expose women to police
abuse and incarceration in prisons,
without access to health services.
All of these factors have a direct
impact on women’s vulnerability to
HIV. A study of European countries
found that women injectors were
50% more likely than men to be
infected with HIV.
And yet, women drug
users often find that they
have nowhere to turn for help.
Doctors, politicians, communities
and even family members judge
them harshly for their perceived
failure to fulfil their roles as wives
and mothers. As a result, many
women drug users keep hidden,
avoiding healthcare providers
and even other drug users. Active
users who become pregnant
–particularly those with HIV or
hepatitis C – are often pressured
to have abortions, or to give up
custody of their children. Access
to prevention of mother-to-child
transmission (PMTCT) of HIV
services is poor, even in countries
that have declared universal
access to PMTCT. At one of the
satellite sessions of the 2008
International AIDS Conference
in Mexico City, Ruslan Malyuta
of UNICEF explained that in
St. Petersburg, where ART is
relatively well-funded, only about
50% of pregnant intravenous
drug users (IDUs) receive PMTCT.
In Ukraine, women with a history
Special report
HIV and women who inject drugs…
Women who inject drugs remain one of the world’s most vulnerable populations.
Sophie Pinkham
…many
women drug
users keep
hidden….
…healthcare
providers
continue to
stigmatise or
reject women
drug users…
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using women the support they
need. One exception is MAMA+,
a programme for HIV positive
pregnant and parenting women,
many of whom are drug users,
which was presented by Anna
Shapoval during a session at the
2008 Conference. Pioneered by
Doctors of the World in Ukraine
and Russia, MAMA+ offers a
wide spectrum of services,
ranging from basic material
assistance and counselling to
legal aid and referrals to ARV and
drug treatment. Using a multidisciplinary
case management
team and a personalised
approach, MAMA+ builds bridges
between the many social and
medical services needed by its
clients, showing that HIV positive
drug using women can be
‘successful’ mothers, when they
are given the support they need
to care for themselves and their
babies. Where before, as many
as 20% of HIV positive women in
some Ukrainian sites once gave
up their children to institutions,
95-99% now keep their children
within their families.1
Because internalised
stigma and low self-esteem are
important ingredients in women’s
unwillingness or inability to
seek care, it is essential to take
measures to empower women
drug users and teach them
how to take control of their
own health. Indonesia’s Stigma
Foundation recently began a
new project, Femme, comprised
entirely of women drug users and
female partners of drug users.
Femme members participate
in workshops and self-support
groups, where they talk about
sexuality, relationships, and
gender, building social identities
and networks that are structured
around women. Femme is
currently developing a project
that will reach out to women drug
users in several areas of Indonesia,
seeking to develop leadership
skills and self-determination and
increase women’s access to care.2
While there has been some
progress in support for gendersensitive
harm reduction, there
is still a long way to go. With
the numbers of women drug
users increasing continuously,
it is essential that governments,
funders, and advocates ensure
equal access to healthcare for this
highly vulnerable group.3
FOOTNOTES:
1. For more information on MAMA+,
please contact Vandana Tripathi, Doctors
of the World, at vandana.tripathi@
dowusa.org
2. For more information on FEMME and
the Stigma Foundation, please contact
Sekar Wulan Sari at kupukupusore@
gmail.com
3. For more information on women and
harm reduction, please visit www.soros.
org/harm-reduction
Sophie is the Programme Officer at
the International Harm Reduction
Development Programme of the
Open Society Institute (OSI).
This is my first time to be in an
international AIDS conference. I am
overwhelmed, first of all, by the number of
people here, I didn’t believe it would have
this kind of people. And secondly, I’ve got
to meet many different kinds of people –
friendly, not so friendly, those who have
good information and want to share their
information.
My organisation, the Mamas Club, has
come out to be known, because of the Red
Ribbon Award and for the great work it is
doing at the grassroots levels, especially
as far as helping HIV positive mothers and
their children are concerned. The mothers
have been able to network with other
HIV positive women, and they have been
involved a lot in the dialogue with other
grassroots level community organisations.
My experience so far is good, though a
lot of crazy things are happening here too.
It is for a good cause and everyone wants
to be heard and to stand out, to know how
they feel and what they should know about
the HIV epidemic. I really expect to learn
more from the different sessions, from the
different people that I have met, and to
share my experience with working with HIV
positive mothers – to see, if there is a way
that mothers can be heard, and the voices
of their children.
Maria Natukunda, Mamas Club, Uganda
Comment:
Mothers can be
heard…
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HIV and AIDS continue
to be described
as a concentrated
epidemic in Asia, with
interventions focussing
primarily on prevention
among ‘high risk’ groups,
such as men having
sex with men (MSM),
intravenous drug users
(IDU), and sex workers.
Yet, patriarchal systems; the
low status of women vis-à-vis
men; and law and customs, which
give women limited or no rights
to own and control property, result
in compromised livelihoods and
security for women, continue
to leave women, generally, in a
vulnerable position in many parts
of the region.
In the Women’s Networking
Zone, prominent women activists
Chandika Ratri, Anandi Yurvaj,
and Jaya Nair, discussed critical
issues in the region. Does the
recently released Commission on
AIDS in Asia report adequately
reflect the realities on the ground?
An important omission, asserted
Ratri, was the situation facing
migrant workers and refugees.
Migrant workers – 80% of
whom are women – often find
themselves alone and isolated
in their destination countries,
far from families, husbands,
partners, and children. They
may be susceptible to engaging
in casual sexual relationships to
relieve their loneliness. Women in
domestic service report frequent
incidences of coercion into sexual
relationships with employers,
and experience high rates of
sexual harassment. Furthermore,
language barriers may inhibit
women’s already limited ability
to negotiate sexual engagement,
including condom use. Access to
services and information may also
be impeded by language barriers,
working conditions, or lack of
familiarity with the local area.
Refugees in many situations face
similar challenges, as well as high
rates of sexual violence within
refugee camps.
Despite the recognition that
HIV transmission among women
in the region occurs through
marriage, all the speakers
felt that the programmatic
focus on ‘high risk groups’
resulted in a dearth of
interventions that reach out
to women-in-general, who
often do not feel themselves
to be at risk. Interventions
that focus on MSM, IDU,
sex workers and their clients,
rarely acknowledge the risk
that these behaviours pose
to wives and partners, who tend to fall through the
programmatic gaps.
Participants at the dialogue debated the women’s
empowerment approach that some countries in the
region are beginning to adopt, versus integrated
strategies that work with both women and men, thereby
creating an enabling environment for women to exercise
newly acquired knowledge of their rights. Women first
need safe spaces in which to reach a level status with
men, be aware of and able to express their rights, and
be properly informed, before women and men can work
together on an equal footing. What chance is there
of implementing an integrated approach, asked Jaya,
if a woman cannot even speak to her husband about
sex? And empowerment needs to go beyond HIV, said
Anandi, to reach all areas of women’s lives.
Luisa is the Monitoring and Evaluation Officer of ICW.
45
Empowerment needs to go beyond HIV
…empowerment
needs to go
beyond HIV…to
reach all areas
of women’s
lives…
In Focus…
Empowerment
needs to go beyond HIV…
Women and HIV in Asia
Luisa Orza
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Studies in various places
have shown that persons with
disabilities are at high risk of
verbal, physical and sexual
violence; one study in the
USA showed that women with
disabilities suffered abuse for
longer periods of time than nondisabled
women. In addition,
healthcare providers often neglect
discussions about family planning
with women with disabilities
and they may particularly lack
access to contraceptives, if they
suffer from spinal cord injuries
or other physical infirmities.
As a consequence, women face
unwanted HIV and STI infections,
as well as unwanted pregnancies.
The right to personal security, to
be free from inhuman treatment,
and to decide whether and when
to have children all demand that
people with disabilities also have
effective access to services for
survivors of violence, including
post-exposure prophylaxis (PEP),
emergency contraception, safe
legal abortion, psychological
assistance and legal aid.
Maria is a Senior Advisor at Ipas.
In a survey on HIV and AIDS
and disability carried out
for the World Bank in 2003,
Nora Groce found that:
…HIV is a significant and
almost wholly unrecognised
problem among disabled
people worldwide.
In the past five years, more
interventions have been developed
regarding HIV and other STIs for
people living with disabilities, but
this diverse population is among
the most marginalised regarding
HIV and AIDS work. Over the
past five years, incorporation of
human rights principles into HIV
and AIDS-related work has also
progressed. It is now time to create
the linkages between the two
areas.
There are several
internationally recognised human
rights that directly apply to the
development of interventions for
people with disability. The right
to be free from discrimination
immediately springs to mind
and this is now reinforced by the
newly adopted UN Convention
on the Rights of Persons with
Disabilities, which says:
…State parties shall protect
the privacy of personal,
health and rehabilitation
information of persons with
disabilities on an equal basis
with others.
More specifically, the
Convention demands that States:
…provide persons with
disabilities with the same
range, quality and standard
of free or affordable health
care and programmes as
provided to other persons,
including in the area of
sexual and reproductive
health and population-based
public health programmes.
To respect, promote and
fulfil this right to health and
healthcare, it is vital that
persons with disabilities receive
information and education
about HIV, other STIs, and
other issues of sexual and
reproductive health (SRH). For
some groups, this requires the
production of special materials
and training of specialised
providers and allocations for
these are often missing from HIV
and AIDS and SRH budgets.
Research in the disability field
has led to improvements in
communication methods and
aids that governmental and nongovernmental
programmes should
incorporate, so that persons with
disabilities are in the position to
enjoy their right to the benefits of
scientific progress.
…healthcare
providers
often neglect
discussions
about family
planning with
women with
disabilities…
In Focus…
Disabilities and HIV and AIDS –
How do human rights apply?
Maria de Bruyn
…it is now
time to create
the linkages…
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47
Women in the global HIV and AIDS arena S
ince the mid-1980s,
researchers and grassroots
organisers have been
calling attention to the social and
political context of AIDS, and to
the specific situation of women
struggling to protect themselves,
but with scant effect. The sharp
critiques of the early period could
be repeated and expanded today
with no loss of cogency or point.
In February 2008, a New York
Times editorial lamented ‘a new
surge’ in AIDS infections among
young men in New York City,
leading the Executive Director of
the New York City Civil Liberties
Union, to write a letter asking
pointedly why only teenage boys
were discussed: 48 percent of the
increase was in teenage girls1.
Why are women so invisible?
Not only was women’s
collective action not widely
acknowledged or supported, but
women’s particular vulnerability to
AIDS worldwide frequently went
unrecognised. One major reason
often given for overlooking the
situation of women was that men
were at the centre of the Western
epidemic. In the United States,
initial estimates suggested that
positive men outnumbered women
by about 10:12. However, while
all members of minority groups
in the United States were three
times more likely to have AIDS,
than Whites, minority women
were proportionately more at risk
than men from minority groups.
A Black woman was 13 times
more likely to have AIDS, than
a White woman and a Latino
woman was 9 times more likely3.
At the 2008 International AIDS
Conference in Mexico City, twenty
years later, in a report entitled,
Left Behind: Black America: A
Neglected Priority in the Global
AIDS Epidemic, the Black AIDS
Institute, noted that in the United
States,
…AIDS remains the leading
cause of death among Black
women between 25-35years
and the second leading
cause of death in Black men
between 35-44 years of age.
The neglect of women in the
United States from the early 1980s
on, and actually as a result of this,
of women internationally, points
to a potent combination of racism
and sexism.
History of women’s struggles
for representation in the global
arena
The international recognition
of the feminisation of HIV and
AIDS has been both temporary
and erratic. Indeed, the current
political climate leaves little
assurance that women’s demands
for protection, care, and treatment
will progress in any concerted
fashion in the coming years.
While much attention has been
paid to maternal transmission
of the virus, the protection of
women from infection has been
less considered.
In 1990 at the San Francisco
International AIDS Society
Conference, plenary speakers
Mindy Fullilove and Helen
Rodriguez-Trias both articulately
raised the issues of women’s
subordination. The Women’s
Caucus of the International
AIDS Society was formed at this
meeting. The 1992 International
AIDS Conference was held in
…women’s
particular
vulnerability to
AIDS worldwide
frequently went
unrecognised…
Reflections…
Women in the
global HIV and AIDS arena
An ongoing struggle for representation and participation
Ida Susser
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Amsterdam after people refused
to accept a conference proposed
for Boston, due to US restrictions
on allowing people living with
HIV to enter the US. The decision
was made rather late, which left
little preparation time. Jonathan
Mann, co-chair of the conference,
was adamant that human rights
and community participation –
especially including people living
with HIV – would be a key theme
of the conference.
At that time, a group of women
living with HIV in the Netherlands
wanted to establish connections
with other HIV positive women
around the world. The Women’s
Caucus of the International AIDS
Society and members of ACT UP
The Netherlands proposed holding
a pre-conference meeting that
would unite positive women and
help prepare them for navigating
the conference. Fifty-six women
from 27 countries attended
this initial event and over the
years ICW came to represent an
extremely central group of women
activists. As a result of this history
of women’s activism, a plenary at
the 1994 Yokohama International
AIDS Society Conference focused
on ‘Methods Women can Use’4.
In Durban, during 2000, at the
International AIDS Conference,
Geeta Rao Gupta gave a plenary
speech concerned with women
and AIDS. This was the first
conference to be held in the global
South. To enter the scientific
conference required a hefty
registration payment. Communitybased
women leaders and global
advocates collaborated to create
a forum parallel to the Durban
conference that would be open to
the public. ‘Women at Durban’,
as this initiative would come to
be called, highlighted the need for
open forums where community
members could engage the
International AIDS Conferences
and led to the initiation of ‘Women
at Barcelona’ and ‘Mujeres
Adelante’ at the subsequent
International AIDS Conference
in Barcelona, Spain. ‘Women
at Barcelona’ was organised to
bring together advocates and
researchers on women and HIV
at the conference. Organised by
Creacion Positiva in Barcelona,
‘Mujeres Adelante’ was a parallel
forum, open to the public, which
focused on the engagement of
local community women living
with HIV. ‘Women at Barcelona’
and ‘Mujeres Adelante’ staged a
march at the closing ceremony
to highlight their frustration with
the neglect of issues important to
women in the AIDS response, with
chants, such as ‘Women’s health
is world health’. The difficulties
for women to be heard in the
conference persisted.
Together, these initiatives set
the stage for the International
AIDS Society to incorporate a
forum at the International AIDS
Conferences that would be
open and available to local
community members and
conference delegates alike.
The Global Village became
institutionalised at the
International AIDS Conference
in Bangkok, Thailand, where
the Thai Women and AIDS
Task Force set forth a feminist
platform.
At the 2002 Barcelona
International AIDS Conference,
the Women’s Caucus of the
International AIDS Society
and ICW under the auspices
of ‘Women at Barcelona’
convened to draw up a set of
principles for the health rights
of women and girls, which became the Barcelona Bill
of Rights. The Barcelona Bill of Rights, which included
the controversial right to abortion, among such issues
as rights to land and inheritance, was reiterated and
carried forward at the 2004 Bangkok International
AIDS Society Conference. The ATHENA Network
was formed after Bangkok to connect feminist, human
rights, and AIDS networks in global activism. Building
from this history, ATHENA, ICW, the Blueprint
Coalition, and Voices of Positive Women joined to
convene the inaugural Women’s Networking Zone in
the Global Village of the 2006 International AIDS
Conference in Toronto. Since that time, a Women’s
Networking Zone has been designated at international
AIDS meetings, and panels related to women’s claims
and women’s marches have been organised5.
Women’s participation and representation in the
global arena today
In discussing plans for sessions on gender at the
2008 International AIDS Conference in Mexico City,
it was recognised that men who have sex with men
(MSMs) were an extremely important risk group for
Latin America and themselves highly stigmatised.
However, at the same time, HIV positive women in
Mexico City were struggling for representation on
the planning panels. One of the problems raised by
organisers was that most of the women did not speak
English. Among the positive men in Latin America,
English-speaking professionals could represent the
48Women in the global HIV and AIDS arena
…the protection
of women
from infection
has been less
considered…
…to make sure
the priorities
of HIV positive
women from
Mexico and the
region were
represented…
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concerns of MSMs. But, it was
suggested, most positive women
were poorer and less educated
than the men. In the end, Violeta
Ross, who has a graduate degree
in anthropology and is a member
of ICW from Bolivia, as well
as Patricia Perez, a founding
member of ICW, spoke eloquently
at the 2008 International AIDS
Conference. In addition, one
plenary paper was allotted to
review the issues of gender and
the vulnerability of women and
girls, and another reviewed and
represented the experiences and
activism of women sex workers.
A special request was added
to the call for abstracts asking
researchers to specify whether
or not their data was detailed
by gender. The controversies
concerning the representation of
gender and the voices of positive
women highlighted the ongoing
struggles, even in the most
enlightened precincts, for women
and girls to combat erasure of their
needs for prevention, treatment,
fertility, and sexuality with respect
to HIV and AIDS.
In Mexico City women’s issues
did get a real place – there were
packed sessions on breastfeeding,
fertility and desire among positive
women, and gender-sensitive
discussions about micro-finance
programmes, sex workers, medical
male circumcision and inheritance
laws. Many people were heard to
say things like ‘These meetings
were really good on women’s
issues’ or ‘there was a real change
in the programme this year, we
found so many panels of relevance
to women’.
These major shifts were
the result of many years of
work on the part of women’s
advocacy organisations, which
were brought together under the
ATHENA Network. In Toronto
at the 2006 International AIDS
Conference, there were no panels
on breastfeeding, few papers
on fertility, desire or women’s
perspectives on circumcision,
sex work, harm reduction or
other issues. Women’s voices,
disappointed with their erasure,
were highlighted by the women
and girls march organised by
the Blueprint Coalition with
ATHENA and other partners.6
As a result, ATHENA together
with ICW, Blueprint, and others,
with considerable support and
leadership from the World YWCA
worked to remedy the situation
from the ground up.
In 2007, Blueprint and
ATHENA analysed the abstracts
accepted at the 4th IAS Conference
on HIV Pathogenesis, Treatment
and Prevention in Sydney and
found major gender inequities.
Less than 20% of the abstracts
addressed women’s issues at
all and most of these were
concerned with mother-to-child
transmission.7
To remedy this situation, a
coalition of groups worked to
nominate women’s advocates
for the initial Mexico planning
committees. Members supportive
of women’s issues were appointed
to the Community Programming
Committee, Leadership
Programming Committee
and Scientific Programming
Committee, and we worked
to make sure that the abstract
categories and programme
descriptions would incorporate
women’s issues. Advocates for
women also collaborated with
other conference planners to
include broader social justice
categories, such as war, violence,
globalization and migration
that incorporate women’s
concerns. This ongoing work was
reflected in the transformation
of the Mexico Programme,
which included significant
contributions on issues crucial
to all women, including women
living with AIDS, commented on
internationally.
Further, ATHENA
representatives strove to make
sure the priorities of HIV
positive women from Mexico
and the region were represented
throughout the main Conference
programme, as well as in the Global Village. ATHENA
formed a consortium with Balance Promoción para el
Desarrollo y Juventud; Colectivo Sol; ICW Global;
ICW Latina; and Mexicanas Positivas Frente a la Vida
under the name ‘Alliance for Gender Justice at AIDS
2008’ to create a Women’s Networking Zone, building
from the history of ‘Women at Durban’ in 2002, and
to lead a women’s rally and march to the Zocalo in
Mexico City.
As we have seen from the 2008 International
AIDS Conference in Mexico City, the struggles
for participation and representation continue – yet,
women’s organisations have pushed forward. Women’s
perspectives were heard loud and clear at the Mexico
City Conference, which represented one more step
forward in the struggle for representation of women’s
issues in the global arena.
FOOTNOTES:
1. Lieberman, D. 2008. ‘Letter to the Editor’. In: New York Times,
January 22, 2008.
2. Sabatier, R. 1989. AIDS and the Third World. Philadelphia: The
Panos Institute, in association with The Norwegian Red Cross.
3. Sabatier, R. 1989. AIDS and the Third World. Philadelphia: The
Panos Institute, in association with The Norwegian Red Cross.
4. Stein, Z. 1994. ‘Methods Women Can Use’. Plenary,
International AIDS Society Conference. Jokohama, Japan.
5. Susser, I. 2007. ‘Women and AIDS in the Second Millennium’.
In: Women Studies Quarterly; 35(1,2):336-344.
6. Susser, I. 2007. ‘Women and AIDS in the Second Millennium’.
In: Women Studies Quarterly; 35(1,2):336-344.
7. Collins, E. 2008. Research on Women: Are We Doing Enough?:
An analysis of abstracts from the IAS Conference on HIV
Pathogenesis, Treatment and Prevention, 2007. International
AIDS Society Conference: Mexico City.
Ida is a Professor of Anthropology at
the University of New York Graduate Centre.
49
Women in the global HIV and AIDS arena
…women’s
perspectives
were heard
loud and
clear…
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ALQ incorporating Mujeres Adelante 50invisibility and neglect
their environment, access to
resources, culture, etc. The group
agreed there needed to be more
unity between women in racial,
ethnic, and indigenous ‘minority’
groups in the global south and
global north for sharing of
experiences and strategies, as well
as to build political power to call
on duty bearers to remove barriers
to equal rights.
Jacqui is the Coordinator of
Women of Color United.
It is very ironic, in fact, that
in the early days, and to some
extent still today, people
equate feminism with lesbianism,
yet from the discussion lesbians
often feel invisible and neglected
in the agenda of the women’s
rights community. As HIV
and AIDS and women’s rights
movements we need to do a
better job at incorporating issues
of violence against lesbian,
transgendered and bisexual
women, as well as acknowledging
and addressing the reality of HIV
positive lesbians, transgendered
and bisexual women.
Women of Color United
facilitated a session on race,
ethnicity, and indigeneity and
impact on HIV and AIDS. This
discussion yielded a sense of
invisibility and neglect by women,
whose very identity as racial,
ethnic, and indigenous minority
group members place them at
heightened risk for HIV and
violence. Women reflected that
to the extent that race/ethnicity/
indigeneity is acknowledged,
it is usually in a way which
pathologises, rather than
addresses, the injustices these
groups face; and how this impacts
…people
equate
feminism with
lesbianism,
yet … lesbian
often feel
invisible and
neglected in
the agenda of
the women’s
rights
community…
In Focus…
Invisibility and neglect
The session Where are the voices of lesbian women? raised issues that should be under greater consideration
by the HIV and AIDS, as well as the women’s movements.
Jacqui Patterson
Points well made…
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Comment
The International AIDS Conference (IAC) is as much
a dynamic, exciting, and knowledge-sharing, as an
intimidating and, at times, confusing space. The
incredible opportunity I had to give a plenary input, to
advocate for, and to put on the agenda the voices and
issues affecting us, as young people, especially young
women, to a room filled with decision makers and key
analysts; and to provide contributions and ideas for an
effective response based on our realities with respect to
HIV – was very impacting and empowering. It was great
to see the issues related to young women’s leadership
acquire more relevance.
I think that in the way we started listening to the
voices and realities of those, who face the effects of AIDS
and are most vulnerable, and as we start incorporating
this into our actions for solutions, as well as our work
language, we are able to have a clearer vision of what
is at stake, and how we need to respond to the HIV and
AIDS pandemics.
The real challenge, however, is what we are going
to do when we go back home. If the IAC has implied
a change in our actions, than we are to apply some of
what we have learned. For me, one of the greatest
benefits of my IAC experience was to see the
solidarity, networking and community integration
on the issues surrounding HIV, instead of the
individualism so characteristic of the local level,
and by our country authorities. In my opinion,
women demonstrated the ideal response, as various
other population groups, such as young people, did
– together, integrated, and taking leadership, not just
demanding it. I wish more of the political woman leaders
would take a stand and sum up to our common efforts.
Already before this IAC and certainly after it, I think
that issues of young women’s leadership are on the
discussion table, but still they are not fully on the
implementation table yet. It would have been great
to have more of the caucus activities – that were so
characteristic of the women’s networking zone in the
global village – in the main conference.
The conference told us that women are vulnerable,
due to many social norms, human rights violations,
and various forms of violence; and that methods of HIV
prevention are improving for us. While there is much
consensus on women taking the lead on women
issues, not much was emphasised on mainstreaming
of women’s issues through the array of actions
surrounding HIV and AIDS. The conference further told
us that we are at the centre point; that feminisation is
still ongoing; and that there is more to be done. Yet, for
me, what fell off the table in the main conference was
best practices and in-depth analysis of solutions, and
of where we need to target our efforts from now on.
Elisabet Fadul, Coordinadora General, Red Dominicana
por los Derechos de los y las Jovenes D-Jovenes /
Dominican Republic
Comment: We started listening to the voices
and realities…
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ALQ incorporating Mujeres Adelante 52Quite a profound retrenchment
a two day summit of our own,
prior to the conference, and now
we have a women’s plenary at the
very end of the whole conference.
I see a real retrenchment from
the position of weaving us into
the whole fabric of this epidemic.
And, in my point of view, that
is a real tragedy, because the
numbers of HIV infection among
women are not decreasing at all,
but instead the numbers are still
climbing. I just don’t think that
suddenly women should be back
to begging to be understood as
50 percent of this epidemic – and
it seems as though we are really
back there.
Louise Binder, Blueprint, Canada.
I have been to a number
of these conferences,
and certainly in the
early conferences,
it was almost as
though women were
not involved in this
epidemic in any way.
We were not seen as being
impacted; we were not seen as
doing the work; we were really
invisible. This started to change
with some satellite sessions
about women’s issues, but again
these sessions were kept discreet
– away from the main part of
the conference. I think that the
conference, in which we had
the greatest visibility, was the
conference in Toronto – where we
had the first women’s march that
was an authorised march; where
we had women’s speakers early in
the programme, and were part of
the main conference and plenaries.
After the pinnacle, at Toronto,
I had very high hopes that this was
a real change in the understanding
of the impact of HIV globally
on women, and that, therefore,
women would become an integral
part of the conference, going
forward. What I sadly see here
in Mexico, is that there seems to
be quite a profound retrenchment
from that position. We are being
relegated to satellite sessions, and
…a real
retrenchment
from the
position of
weaving us
into the whole
fabric of this
pandemic…
Reflections…
Quite a profound retrenchment
Dashed hopes for real change in the impact of HIV on women
Louise Binder
Calls for condoms
Many ‘global villagers’ engaged in a wide range of challenging and interesting dialogues, engagements, and interactions
inside the tent, while outside a number of ‘calls’ were made by young people and their allies.
Highlighting that 50% of all new HIV infection are among young people, calls
were made for condom use by a group of young people, while at the same time
another group of young people calling for abstinence and ‘not sleeping around’,
tried to enter the ‘village’.
While most would see this as contradicting messages fuelling the HIV
pandemic among people, this could also be seen as just a ‘difference in prevention
choices’ – with two groups of young people advocating for their ‘choice’. However,
considering the high risk of HIV infection among people and prevailing
challenges, including ‘moralistic’ approaches to HIV prevention, advocating for
abstinence in front of the Global Village of the 2008 AIDS conference was received
by many as contradicting the sentiment of the conference.
So, while there are ‘choices’ for young people, there is also the need to provide
factual information about HIV prevention, and to ensure that promoted HIV
prevention strategies are evidence-based – and evidence shows that condoms
reduce the risk of HIV infection is a fact.
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The L word and the G word
There must have been
500 workshops at the
International AIDS
Conference that have
‘sexuality’ in the title or in
the tiny, almost illegible
conference programme
descriptions. Back to
back, one would have
to be here for a week
to attend them all. But
I’m still left with the
feeling that something
is missing. Maybe,
more important than
that frame is, who is
missing, whose lives are
somehow overlooked
and rendered invisible,
amidst the rich
discussions taking
place?
I’m wondering now
about lesbians (and the
epidemiologically-driven, but
still rather flat term ‘Women who
have Sex with Women’ [WSW]). I
don’t mean ‘lesbians are missing’
in a simple sense, because, as is
the case since the inception of
these AIDS conferences, we are
consistently here, doing amazing
work. But I still have questions
about our lack of
visibility as activists, as
defenders of HIV-related
rights, and as subjects of
epidemiological inquiry.
On the whole, we are
seen more as individuals
and not as a collective
movement, and we are
really quite absent from
public health or human
rights focus. In a cynical
moment, I’m reminded of
how little this discussion
has advanced from
the very early 1990s,
when the U.S. Centers
for Disease Control,
if memory serves me
correctly, claimed that
a lesbian was someone
who had not had sex with
a man in 13 years. Fifteen years
later and I’m still trying to figure
that out. But I digress….
First, let me pay homage to
those who have preceded me in
these AIDS Conference spaces,
and in first naming this critique.
There are many lesbians who
have organised at IAC events, and
who have had some of these same
concerns, for close to two decades.
So what’s changed? I think while
the details may have shifted, the
overall situation might be similar
now to what it was years ago:
seems there are two fundamental
sets of questions – one about
representation in conference
proceedings, and the other set, in
relation to ongoing lesbian and
HIV advocacy and movement
concerns.
Lesbians and ‘lesbian issues’
could and should be a part of so
many discussions in the venue.
And yet, they, and we, are not,
or, lest I be too cynical, we are
not with regularity. We, and our
concerns, are a sporadic addition,
…left with the
feeling that
something is
missing…
Reflections…
The L Word and the G Word
Cynthia Rothschild
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girls’ means heterosexual, and
‘sexual minorities’ means men
and transgender people. So there
is a risk, again, of our lives and
concerns remaining too peripheral
to both areas, since they have
been cleaved rather awkwardly in
two. In short, lesbians are women;
we may be, or have been, girls;
we are considered to be ‘sexual
minority’ (a term I really don’t
like, by the way); and some of us
are also transgender. So do we
need our own UN-based ‘gender
guidance’? I hope not. Can we
expect the groups, who sought this
gender separation to adequately
focus on women and sexual
orientation in both the further use
of the guidance and on-ongoing
programming? Hmmm. Not sure.
Are there lessons these groups
will learn, once the dust settles?
Hmmm again.
Here is another example of
the complicated ways in which
‘gender’ is used or misused in HIV
discourse and analysis: I heard
a panellist, in a session focused
on gender, say that ‘MSM have
stolen the gender agenda’. Her
implication, to my ear, was that
gay men in particular have stolen
the term itself and the discourse
of gender in ways that limit, in her
mind, the focus on the experiences
of women and girls.
My primary point here is that
saying that *any* agenda within
the HIV universe is stealing from
another is tricky business. Agenda
grow with visibility from social
an occasional bright light amidst
the dark mood lighting in the
session rooms and amidst the
lovely frenetic chaos of the
Global Village.
Let me start with two of the
recent 2008 IAC bright lights:
There was a great lesbian/
WSW session this week in the
‘Hot Topics Zone’ (an area of the
Global Village), where people
from lots of different backgrounds
and sexual orientations came
together to strategise, to talk
about sex, desire, violations,
invisibility, movement building,
the need for data on lesbians and
HIV transmissions, and the need
for advocacy at upcoming AIDS
meetings. Possibly the youngest
participant in this discussion was
a fabulous woman – she was 14,
and she spoke so passionately
and earnestly about her sister,
who is a lesbian, and who faces
discrimination that, as our friend
noted, made no sense. Exactly!
Well, she got a much deserved
round of applause from our group
after her comment – a sweet,
simple moment that was both
moving and politically charged.
The other bright light occurred
in a large session on violence
against women, where an activist
from the group Gays and Lesbians
of Zimbabwe, made a great
contribution as panellist – she
highlighted violence against
lesbians and how advocacy on this
issue is particularly complicated
in the current Zimbabwe political
climate. Add an important
undercurrent: her activism takes
place in a country, where the
president has said that gays and
lesbians are ‘lower than dogs
and pigs’. She did not go into
a lot of detail, but for anyone
reading about (or living) recent
developments in that country’s
economic and political landscape,
her words had great meaning.
Aside from my two bright
lights, and the wonderful
discussions I have had with many
women here, there is a range
of discussions where this same
set of issues related to lesbians
and HIV is not consistently
raised. Here is one policy-related
example: in the development
of the UNAIDS Global Fundrelated
‘gender guidance’, there
have been difficult discussions
about the meaning(s) of the term
‘gender’, and how to maintain a
focus on experiences and rights
of women and girls, but also
highlight the needs and concerns
of gay men, MSM (including in a
gender binary for a moment, just
reverse the WSW from above),
transgender people and men
and boys.
Lesbians and gender now
occupy a thorny position amidst
a struggle that sadly reveals both
sexism and homophobia within
our social justice HIV universe:
lesbians are central, in theory, to
both sets of analyses. But, without
the proper level of scientific and
sociological inquiry, ‘women and
…set of issues
related to
lesbians and
HIV is not
consistently
raised…..
…reveals both
sexism and
homophobia
within our
social justice
HIV universe…
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The L word and the G word
effective human rights promotion
require specificity, visibility and
recognition, especially in our
universe of text and words, and
documents, and policies. This is
the same universe where, whether
or not marginalised groups are
named might mean, access to, or
denial of, resources, or, in certain
instances, life and death. That may
sound dramatic. But I believe it
is accurate. And it is accurate for
lesbians. So, where we are named,
and where we are recognised as
activists, as subjects of public
health studies or as survivors of
violence matters. Saying the L
word and the G word out loud, in
the conference programmes, in
ongoing health study and political
advocacy matters.
We need better means of
addressing these omissions; we
need allies to do their work,
whether in research, production
of scientific data, or human rights
reporting. And in the interim,
lesbians will continue speaking
out, making demands, holding
workshops and talking about sex,
pleasure and desire amidst the
whirl of AIDS organising. I look
forward to watching, hearing and
reading all of the above.
Cynthia is a sexual rights/LGBT/HIV
& AIDS/feminist activist based in
New York.
movement struggles, and from
the lessons learned from real
lived – and often discriminatory
– experience. To imply that one
group of marginalised people
‘steals’ the spotlight from another
is a very knotty tactic. We get
nowhere by arguing that abortion
rights advocacy ‘steals from’ a
women’s rights agenda, or that
an AIDS focus ‘steals from’ a
broad health agenda. Surely there
must be a place, among all the
discussion, to have the experiences
of marginalised groups become
or remain simultaneously visible?
Surely there must be a way of
explaining detailed experiences
in ways that build, rather than tear
apart alliances?
So here is one more age old
public health and epidemiological
question that links, or does not
link (as the case may be) lesbians/
WSW sex and HIV and AIDS: in
short, can we or can’t we? In terms
of transmission of the HI virus
in woman-to-woman sex, studies
have said ‘absolutely, women
can transmit the virus to other
women’ and alternatively, ‘it’s very
unlikely’. But overall, most studies
do not even address the question.
So where does that leave lesbians?
One quick answer: at risk. The
absolute invisibility of WSW and
lesbians in discourse and study of
transmission is also problematic,
because sometimes it is a silence
perpetuated by our own social
movements; there is no reason
why women’s rights advocacy and
‘sexual minority’ advocacy should
not address women’s same-sex
transmission. Gender debates,
whether at the IAC, or in other
HIV-related discussions, must
break open this silence.
The same is true in terms
of violence against women, a
central agenda in women’s human
rights advocacy. There is almost
no ‘evidence-based’ data about
lesbians, violence and HIV. What
we have is a set of disparate
stories about lesbians and WSW
who sleep with, or are raped by
men and who then contract the HI
virus. And we have stories about
HIV positive lesbians who are
targeted for abuses – physical,
emotional and verbal – because
of their real or perceived sexual
orientation. Too little women’s
rights advocacy addresses these
stories, these realities, just as
too little human rights advocacy
addresses lesbians as targets
of state and community/family
violence. In these instances, these
are not failure of the UN system or
of the medical establishment, but
of our own advocacy communities.
We are not immune, if you
can forgive the pun, to phobic
responses from, and ignorance
within, women’s rights and human
rights communities. This, really, is
where the invisibility of lesbians
live and experiences come full
circle as cause and consequence
of narrow health and social
justice agendas.
Effective HIV prevention and
…ways in
which ‘gender’
is used or
misused in
HIV discourse
and analysis…
…we need
better means
of addressing
these
omissions…
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ALQ incorporating Mujeres Adelante 56The impact of criminalisation
Special report
The impact of criminalisation on
women and girls
Aziza Ahmed
play out in a courtroom, and if
and how courts will take these
factors into consideration.
Fourth, laws criminalising HIV
transmission will be reinforced
by already existing laws which
discriminate based on sex and
gender. For example, in countries,
which do not acknowledge
marital rape, women are always
seen to have consented to
sex with their husbands. In a
country, where HIV transmission
is criminalised and marital rape
is not recognised, the husband
could always use the defence
of consent to defend himself
against his wife.
Finally, putting women
in jail has a grave impact on
families. Women are the primary
caretakers and providers for the
majority of households. When
women disappear, it is girls that
will have to replace them with
likely negative effects, such as
dropping out of school. Putting
women and mothers in jail also
worsens the situation
for orphans.
Criminalisation of HIV
transmission does not forward
a rights-based approach
to public health. To the
contrary, criminalisation of HIV
transmission detracts from
progress made to respect the
rights of people living with HIV,
and to end stigma
and discrimination.
Aziza is from ICW.
Criminalisation of HIV
transmission refers to
the use of criminal law
to address HIV transmission.
Criminalisation of HIV and AIDS
has taken two main forms –
through HIV specific criminal
transmission laws and through
general criminal laws applied
to HIV transmission. Some
countries not only criminalise
the transmission of HIV, but go
so far as to criminalise exposure
to HIV (even in cases where no
actual transmission takes place).
This article will highlight some
of the main critiques of the
criminalisation framework both
generally and with specific regard
to women and girls.
There are several general
critiques of criminalisation laws.
First, criminalisation increases
stigma for people living with HIV
and/or AIDS. The use of a criminal
law framework to address
the issue of HIV transmission
contributes to an unfounded
notion that HIV positive people
intentionally and recklessly
transmit HIV. Alongside the
laws themselves, media hysteria
and public discourse about
people living with HIV and/or
AIDS as criminals, will be further
stigmatising.
Second, criminalisation laws
are unclear and, therefore, will
be left open to interpretation
by misinformed courts. For
example, how will consent play a
part in determining guilt? Does
one’s knowledge of their HIV
status have to be actual or can
a person be found guilty of HIV
transmission if they ‘should have
known’ they were guilty? This
question leads us to the related
issue of how high prevalence
(and often marginalised) groups
will interface with the law? Will
members of marginalised groups,
who are already marginalised
by the law, now find themselves
vulnerable to yet another form of
criminal prosecution?
Women will have a more
nuanced interaction with
criminalisation of HIV. Firstly,
such laws criminalise mother-tochild
transmission of HIV. Thus,
mothers are often being made
into criminals for having HIV
positive children in resource poor
settings, where they would have
no access to PMTCT.
Second, routine HIV testing of
women leads to the assumption
that women know their HIV
status. If a woman does not
disclose her HIV status to her
partner, due to fear of violence,
for example, her partner could
use the law to blame her for
infecting him with HIV. This
point also speaks to men’s
greater access to legal services
and greater legal literacy, which
results in lopsided access to the
‘protections’ awarded by the law.
Third, and related, the
use of condoms is a potential
defence for women prosecuted
for transmitting HIV – however,
women often are not in a
position to negotiate condom
use. It is unclear how the
gendered dynamics of sex will
…criminalisation
laws are unclear
and … open to
interpretation
by misinformed
courts…
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Conflicting rights
In Focus…
Conflicting rights…
Reproduction in the social context
Risa Cromer
child’s chances of living HIV free.
In environments with low threats
to infant survival where formulafeeding
would be recommended,
Coutsoudis affirms the centrality
of women’s right to motherhood,
regardless of HIV status:
…I feel that women should
have the right to breastfeed
in the first world and
shouldn’t have their kids
taken away from them…
Through respective
presentations on widowhood and
property rights in India, Priya
Nanda and Kousalya Periasamy,
illustrate wider contexts in which
HIV and AIDS, parenting and
social reproduction are intimately,
and politically, linked.
The wider lesson from these
papers is that, in contexts of
conflicting rights or claims,
whether between women and
their children, property owning
husbands, in-laws, or community,
supporting women’s right to
choose, own and negotiate their
own futures ought to be the driving
concern of interventions and
community mobilisations against
HIV and AIDS. Indeed, this panel
convincingly demonstrated that
not doing so will deepen the
pandemic’s devastation to the lives
of women.
Risa is a Doctoral Student at the
University of New York.
The radical spirit and
intention of the session
Impact of AIDS on
Human Development:
Reproduction in the Social
Context is best captured
through the bold and
important messages of
its panellists. ‘I am HIV
positive and want to have
a baby – who can ask
this question, and what
does she need?’ – posed
South African women’s
health advocate
and nurse midwife,
Marion Stevens, to the
packed room. Stevens
argued that current
practices of stigma and
discrimination against
intending HIV positive
mothers need to be
replaced with choiceaffirming
guidelines that
recognise that healthy
babies come from
healthy women.
Gracia Violeta Ross bravely
put a face and story to this issue,
gaining increased visibility within
the international AIDS conference,
by explaining:
…I am more than HIV. Its
one part of me, and another
part of me wants to be a
mother…
For Ross, a HIV positive
Bolivian woman and AIDS
activist, as well as an
anthropologist, becoming pregnant
is part of her political statement
and personal identity. In a candid
and generous speech, she shared
her fears and desires about
becoming a mother, as well as
mapped the medical and social
stigmatisation she both anticipates
and regrets.
South African paediatrician
and researcher, Ana Coutsoudis,
asserted that for intending HIV
positive mothers, like Violeta, and
non-positive women alike, ‘we
need to bring back breastfeeding
as a norm – it should never
have been anything else’. Her
presentation critically addressed
policy and misconceptions about
breastfeeding and mother-tochild
transmission, especially in
contexts of high infant mortality
(e.g. lack of access to clean
water, such as in sub-Saharan
Africa, is likely to kill infants
through diarrhoea five times more
frequently, than HIV and AIDS).
In these contexts, exclusive breast
feeding improves the chance of
infant survival, as well as the
…affirms the
centrality
of women’s
right to
motherhood,
regardless of
HIV status…
…practices of
stigma and
discrimination
… need to
be replaced
with choiceaffirming
guidelines…
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genital mutilation, or trafficking.
We have so many baskets of
declarations, so many, whether
it is CEDAW, the declaration
of violence against women, a
statement by these big leaders,
but we don’t see a real zero
tolerance to violence in a
concrete sense. There is a lot
of impunity, a lot of impunity!
In my country, Zimbabwe, we
have just experienced, and are
still experiencing, this violence,
which was accompanied by a lot
of violence against women and
sexual abuse, but we have not
heard in any real sense about
prosecution of abuses, of violence.
Yet, there is international and
global attention to men negotiating
power for themselves. Six men
at the table talking about power
to themselves, and not about
providing adequate resources
to healthcare, to education, to
prosecution of these perpetrators
of violence.
It is those contradictions that
we always want to bring to their
attention, but also the story that
women are not just waiting by,
and waiting for external action,
for them to be able to give each
other support and care. We know
of many organisations, including
the World YWCA, who in addition
to their advocacy work, do protect
As we go to Vienna,
we need a women’s
forum in Vienna. We
need more spaces for
women as speakers. We
have some women as
speakers, but we feel we
could have a bit more,
instead of kind of a 1/3
principle. I know we
have women scientists,
women politicians and
women caregivers, so in
each of the segments in
the plenary I think we
could have a little bit
more women.
I’m passionate about us
reclaiming that HIV and AIDS
is not just a statistical issue, it is
about individual women, men,
girls and boys, who wake up every
morning looking forward to a
bright day, to a day with dignity
and respect and food, and to walk
in the streets happily and to go
about their lives, like everybody
else. That is what I’m passionate
about. To be able to reclaim back
the discussion on HIV and AIDS
as a human rights issue, as an
equality issue, as a power issue,
as a civility issue. That is what
I am passionate about. That it is
about people, it is not just about
numbers.
I am frustrated and angry
that, we know, after 25 years, we
know what works. We know the
struggles that communities are
going through, and yet, the AIDS
response tends to not prioritise
putting resources to where it
matters most. In a number of
countries, if you look at the
military budget, compared to
the health budget, there are very
little resources going to a primary
health centre – for there to be the
basic medicines, for there to be
the basic minimum of healthcare
personnel, who is adequately
motivated, adequately funded,
for them to provide the first line
of support to communities. But
you will find billions of dollars
in military expenditure, and that
makes me angry. Because the
life we know now, which we can
protect now, we are not giving that
priority, we are giving priority to
anticipated external threats. The
second is that especially women
and girls continue to live with
so much violence and abuse. So
much! Whether it’s multiple rapes,
which happen, or just battering,
domestic violence, or female
…it is about
listening for
action…
…providing
space for
voices in the
structures
of decisionmaking…
In my opinion…
Every action counts!
Nyaradzayi Gumbonzvanda, General Secretary, World YWCA
58Every action counts
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practical strategic operations and
provide strategic services, whether
this be shelter, or counselling;
organisations providing legal aid
services; organisations providing
healthcare, discussing what are the
options if nutrition is not available,
what are the herbs one can use
if you cannot access medicine.
Communities are finding ways of
finding a solution.
Our community is also one
of people living with HIV. We
need meaningful involvement,
not just greater involvement, but
real, meaningful involvement of
people living with HIV and AIDS.
And meaningful involvement is
not just about numbers. It goes
beyond the numbers of involved
people living with HIV and
AIDS. It is about space, providing
space for voices in the structures
of decision-making. It is about
acting on the voices and issues
raised by people living with HIV
and AIDS. It is about listening,
without judgment, and without
stigma and stereotyping. It is
listening with compassion and
empathy, and not with pity, but
with a caring approach. But also
a listening, which allows to look
for alternative solutions, without
remaining with ‘now that I have
listened, and my heart is bleeding,
so I can go home and sleep’ – it is
about listening for action.
And for us that is very
powerful, we are looking forward
to this conference on the whole
notion of ‘Action Now’. What
is the content of that ‘now’, and
who is taking responsibility for
monitoring that ‘now’? So for us,
from the women’s movement and
the YWCA, we are saying that that
‘now’ has to be ‘yesterday’. It is
not about ‘now’. It is about things
that should have been
done previously.
We know how the virus is
transmitted. That we know. This
is about human relations. This is
about personal responsibility, but
it is also about collective action,
and part of that collective action
is what kind of information is
available to communities? And, in
sub-Saharan Africa, where HIV is
shouldered mostly by women and
girls, who are we targeting with
our sexual reproductive health
information? We need to do more
with young people, and we need to
do more with young people around
prevention messages, in a way in
which, we cannot just physically
reach them, but reach the young
people in a way that they listen.
Most of our approaches with
young women work in such a
way that young women have
been saying
…hey, if you are talking
about young women, your
four day workshops don’t
work. Can you set up a
space, like a facebook for
young women in HIV and
AIDS? Where we can blog
and talk, even if it is a
secure space, or protected
space, but which we can talk
in a language, we would
know whether this is cool
or not. Can we use more
modern technologies? Can
you work more with mobile
telephones? For passing
some of the messages but
also in a language, which
young people find exciting
and funky…
Those are the words of young
women. So, how do we reach
young women, and young men?
There have been a number of
programmes, which are school
focused programmes, but they
have also not been adequate in themselves. But in sub-
Saharan Africa, there are so many young people, so
many young women, who are out of school. And where
there is a combination of poverty, and unemployment
and exclusion – that is one area of prevention that we
need to scale-up, that we need to be innovative about.
In this region, and in Asia, there are a lot of
discussions around drug use, and we also need to say
what are the messages, what are the issues around
criminalisation. So when we are talking about drug
use, there is a lot of stigma related to drug use, and
for us working on women’s issues, there is also an
assumption that drug use is mostly masculine, that it is
mostly men. We need to bring to the surface that there
are also women who are drug injectors, and how can
there be a facilitating environment for us to discuss
those issues, without criminalising. There has to be a
discussion around the criminalisation and the support
mechanism that is around the discussion. So on your
question of what do we have to do? The answer is: more
information and more inclusion.
Every action counts, every positive action counts,
and never personally judge, or stereotype. It all starts
with each individual, and having a positive attitude.
59
Every action counts
…the answer
is: more
information
and more
inclusion…
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ALQ incorporating Mujeres Adelante 60Women won’t wait
Special report
Violence against women and HIV:
Women won’t wait!
Neelanjana Mukhia
prioritisation of women’s human
rights, as a response to the
gender-specific impact of the HIV
epidemic on women and girls.
However, this global standard is
rarely translated into policy and
practice. In the case of the links
between violence against women
and girls and HIV, this results
in the failure in policy and an
abrogation of governments’ and
donors’ accountability to respect,
protect and fulfil the human
rights of all.
We already have the
answers
One of the most effective
strategies to address the
intersection of gender-based
violence against women and
girls and HIV is to significantly
increase the resources directed
to gender-sensitive and human
rights-based prevention,
treatment, care and support –
for both epidemics. Education,
including general education, as
well as comprehensive sexuality
education, is a core feature
of effective programming.
In addition, training legal,
healthcare and educational
professionals to recognise and
respond appropriately to the
signs and symptoms of violence,
is also an effective strategy.
Around the world
today, women and girls
in every community
confront, on a daily
basis, the devastating
effects of gender
inequality, violence
and discrimination that
continues to place them
at risk of HIV infection.
Not only does violence
against women, in its
myriad of forms, hinders
the abilities of women
and girls to control
the circumstances and
conditions of their
sexual lives, it also
increases their chances
of contracting HIV.
On the flip side of this, while
violence against women and
girls can lead to HIV transmission,
violence also follows HIV
infection, as HIV positive women
and girls become easy targets
for discrimination, violence and
other human rights violations.
HIV positive women are
also likely to be targeted for
violence and other violations,
because of additional layers
of discrimination and stigma
they face, because they are HIV
positive. Gender inequality lies
at the heart of each of these,
negatively impacting on women’s
health, well-being, and rights.
The waiting must end
Though some progress
has been made in the last
year, national and global
AIDS responses still have not
comprehensively addressed this
intersection. Instead, when they
have looked at both pandemics,
they have failed to capture
the dangerous synergy of the
interlinked crises that put the
health, lives and rights of women
and girls at risk.
Women’s movements
throughout the world have long
advocated for concrete action
to promote and protect the
human rights of all women –
including the rights to be free
from violence, coercion, stigma
and discrimination, and the right
to achieve the highest attainable
standard of health, including
sexual and reproductive health.
The HIV community has also
worked to ensure the promotion
and protection of rights, with the
…gender
inequality lies
at the heart of
each of these…
…to significantly
increase the
resources…
for both
epidemics…
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Approaches that rest on the
experiences of women and girls,
encourage and engage their
participation in decision-making,
and emphasise the importance
of changing community attitudes
to counter gender inequality are
key to an inclusive approach,
with specific attention to women
and girls who are HIV positive.
In the end, it is imperative
that governments, families
and communities ‘combat’
impunity for violence, eliminate
discriminatory laws and ensure
efforts to foster gender equality
in order to comprehensively
respond to both HIV and genderbased
violence. As long as gender
stereotypes lead to violence, or
the threat thereof, people will be
at risk of the negative spiral of
gender inequality, gender-based
violence and HIV.
A dangerous and
dysfunctional split
Funding for programmes
that focus on violence against
women and girls in connection
to HIV remains inadequate
and inconsistent. Research,
conducted as part of the
Women Won’t Wait: End HIV
& Violence Against Women.
Now. campaign1, entitled
Show Us the Money: Is Violence
against Women on the HIV&AIDS
funding agenda?, illustrates
the lack of concerted funding
efforts aimed at responding to
the twin pandemics. In an era
of increasing accountability,
Show us the Money aims to
hold donors responsible to
basic health and human rights
standards in their policies,
programmes, and funding
streams.
According to the report,
whereas issues around violence
against women may be
acknowledged in HIV policy
documents of major donors,
such a focus is often absent from
programming on the ground.
HIV programme efforts rarely
cite violence against women
and girls as a major driver and
consequence of the disease,
nor measure its occurrence
statistically. Separate funding
streams for each create an
ineffective and dysfunctional
split in intervention efforts,
which do little to address the
root causes of either pandemic.
Furthermore, it is almost
impossible to track resources
targeting their intersection, as
none of these donors specifically
track their programming for, and
funding to, violence eradication
efforts within their HIV and AIDS
portfolios.
The Women Won’t Wait
campaign in its report What Gets
Measured Matters: 2008, takes
stock of significant changes,
updates, or revisions to the
policies, programmes, and
funding streams of the major
donors, as presented in Show
Us the Money. It finds that -–
whereas there are few bright
spots in the donor spectrum
– overall the programmes and
financial allocations continue
to marginalise gender equality
and violence against women in their HIV and AIDS
strategies. Not only does failure to track (i.e. measure)
the end point of funds equal an inability to know
where the funding has gone, but it also means that
measuring impact is nearly impossible.
FOOTNOTES:
1. For more information about the Women Wont Wait campaign,
please contact info@womenwontwait.org.
Neelanjana is the International Women’s Rights Policy
and Campaign Coordinator of ActionAid.
61
Women won’t wait
…changing
attitudes to
counter gender
inequality
are key to
an inclusive
approach…
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Why positive women
acc ess abortion care
When I lived with him, I got
pregnant. I decided on my
own to have the abortion
and get sterilised at the same
time at a hospital. I did that
because I had the infection.
Because… wasn’t the baby
in my body? [Woman in
Thailand]
HIV positive women may
need abortion care for various
reasons. Rates of violence against
positive women are high; when
sexual assault is involved and a
woman cannot access emergency
contraception, she may want to
terminate a resulting unwanted
pregnancy. HIV positive women
may access abortion services,
because they deliberately and
thoughtfully choose not to have
a(nother) child. Lack of access to
appropriate contraceptives, and
little or no control over decisions
regarding childbearing, also leads
to unintended and unwanted
pregnancies.
Our research shows that
women, who already have
children, when they are
diagnosed with HIV, may feel
less desire to have more. HIV
positive women have also chosen
abortions, because of fears that
pregnancy would lead to poor
health or death, so rendering
older children motherless; and
for fear that babies might also
contract HIV or be unhealthy or
die soon after birth.
WHO has also noted that,
although the available data is
limited, HIV positive women
appear to have higher risks of
stillbirths and miscarriages,
which may require post-abortion
care. The increasing tendency
of governments to criminalise
HIV transmission may also
cause some positive women
to choose abortion, for fear of
repercussions, if their child is
born HIV positive.
…the doctors also found
out I was pregnant. I did not
want to have a child at this
stage and requested the
pregnancy be terminated.
The doctors only agreed
to the termination on
condition that I consented to
sterilisation. I had no option.
[Woman in South Africa]
Coerced sterilisation and abortion
However, HIV positive women have been denied
safe abortion care or have had to agree to sterilisation
in order to access abortion services. In other cases,
HIV positive women have been forced or feel
pressured by healthcare workers to have abortions.
HIV positive women may ‘choose’ to have an abortion,
because they are misinformed about the possible
impact of a pregnancy on their health and that of
their child. Such misperceptions can be heightened
by health workers, who promote a view that HIV
positive women should not have children. Yet, HIV
positive women have the right to have children and,
given the right care, treatment and support, they
generally can have healthy pregnancies and babies.
Positive women should never be pressured by
their partners, families or health workers to have
abortions. Coercion to be sterilised, or terminate a
pregnancy, is a violation of our fundamental rights to
unbiased healthcare, self-determination, to decide
the number and spacing of our children, to freedom
from gender-based discrimination, and to freedom
from inhuman treatment.
According to the World Health Organisation:
…Ensuring that safe abortion is available and
accessible to the full extent allowed by law to
women living with HIV/AIDS who do not want
to carry a pregnancy to term is essential to
preserving their reproductive health…
What could abortion services offer HIV
positive women?
Abortion should not be the recommended
option for HIV positive pregnant women. Rather,
information about safe abortion should form part of
a holistic package of sexual and reproductive health
(SRH) services, information and advice that includes
family planning, sex education and counselling,
post-abortion/-miscarriage care, and prevention of
perinatal transmission. Unfortunately, comprehensive
PMTCT services that focus on the health both of the
62Needs of HIV positive women for safe abortion care
…they
deliberately
and
thoughtfully
choose not to
have a(nother)
child…
Special report
Needs of HIV positive women for
safe abortion care
Luisa Orza
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mother and the health of the
child in equal balance before,
during, and beyond pregnancy
and birth are still rare.
In order to enhance abortion
healthcare for HIV positive
women, sexual and reproductive
health services need to provide:
• Improved information
about, and access to,
preferably free, unbiased,
legal, safe and confidential
pregnancy, childbirth,
and/or abortion services
for HIV positive women.
• Better training and
awareness raising for
health workers to reduce
the frequency of coerced
abortion and sterilisation
among HIV positive
women.
In addition, it is essential that
abortion care providers should
provide:
• Non-discriminatory, nonjudgemental
advice and
counselling pre- and postabortion
• Further information
and counselling about
family planning methods,
including emergency
contraception
• Referrals to post-rape
services (PEP for HIV
negative women, legal
assistance, shelter,
protection)
• Information and advice
about sexual and
reproductive health and
rights, including genderbased
violence
• Information about HIV
care, treatment and
support services
• Referral to relevant HIV
and SRH services,
including VCT
Luisa is the Monitoring and
Evaluation Officer at ICW.
63
A structure of subordination
…HIV positive
women have
been denied
safe abortion
care…
the ‘legitimate kinship systems’,
which have traditionally
provided a support network
for women. Second, Susser
addressed the international
concern of ‘moral rhetoric’
and socially reinforced gender
systems, which provide a
structure of subordination.
While she specifically discussed
gender issues, as they pertain
to South Africa, it is quite clear
that consistent failures in terms
of gender equality are globally
evident, and certainly present
a unique emergency within
the global AIDS emergency
situation.
Jonah is a Youth Advocate
at the IAC.
Gender discrimination
took lives long before
the HIV epidemic. But if
we are to overcome the
challenges presented
to us by the virus,
we must begin to
address the role that
the subordination of
women plays in its
proliferation.
On a panel entitled
Emergency in an Emergency
Situation – which focused
on factors (social and
environmental) that continue to
exacerbate the HIV epidemic
in Southern Africa – medical
anthropologist Ida Susser made
it clear that
…healthy women are
essential to healthy
communities…
while also boldly
challenging the conventional
conception of women as a
‘vulnerable group’. Citing South
African examples, drawn from
her extensive research in the
region, Susser suggested two
major factors contributing to
the ‘surge’ of HIV infections
amongst the region’s women.
First, she questioned South
Africa’s recent neo-liberal
policies that have limited
investment in healthcare and
transportation, which, she
posits, were aimed at immediate
financial gain, failing to support
…consistent
failures
in terms
of gender
equality
… present
a unique
emergency…
In Focus…
A structure of subordination…
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ALQ incorporating Mujeres Adelante 64Women’s rights equal women’s lives
symposium’s stress that HIV
and AIDS is but one epidemic
among many; panellists argued
and illustrated how violence
and poverty are also devastating
epidemics and challenging
realities co-operating in the lives
of people at risk or living with
HIV. Despite the many overlapping
and connecting factors between
these epidemics, Watts wisely
pointed out how responses to the
respective epidemics sometimes
undermine the other. For example,
the ‘ABC’ intervention in HIV
prevention is undermined by
gender-based violence in that
coerced sex trumps efforts to
remain abstinent, or be faithful,
and challenges one’s ability to
negotiate condom use.
Risa is a Doctoral Student at the
University of New York.
To the dismay of one
woman queuing to
ask a question of the
Women’s Rights Equal
Women’s Lives: Violence
Against Women and
HIV panellists, the
connection between
gender-based violence
and HIV and AIDS is not
acknowledged within
many aspects of the
AIDS response.
Amused by the request to
summarise the connections
between violence and increased
vulnerability to HIV and AIDS
in a ten minute presentation,
Charlotte Watts emphasised
the many types of violence
beyond sexual violence (often
the sole focus of HIV and
AIDS interventions) that
increase vulnerability, including
psychological and economic abuse
by intimate partners; early sexual
abuse; and risky partner behaviour.
Anna-Louise Crago, a sex
worker advocate and researcher,
argued that aggression from state
authorities, unequal protection
under the law, and coercive
sterilisation, abortion and HIV
testing from healthcare providers
are often overlooked forms of
violence. In a complimentary
move, Bafana Khumalo, cofounder
of Sonke Gender Justice
and the One Man Can Campaign,
deconstructed the use of ‘culture’
and ‘religion’ to mask and justify
gender-based violence.
Equally important was the
…HIV and
AIDS is but
one epidemic
among many…
In Focus…
Women’s rights
equal women’s lives…
Risa Cromer
The ATHENA-Sonke-MenEngage panel provided
a platform for important discussions about how to
engage men and boys in accelerating efforts to bring
about gender equality. A growing body of research
is increasingly showing that work with men can
bring about real changes in men and boy’s attitudes
and practices, and can lead to improved outcomes
in terms of condom usage, sexually transmitted
infections, sexual and domestic violence, and support
for gender equality.
The ATHENA-Sonke-MenEngage panel was one
of only a few events at the conference that provided
an opportunity to raise and debate questions about
the growing interest in work with men. It served as
an important opportunity to discuss the emerging
strategies and principles guiding work with men, and to
call for greater collaboration between activists working
for women’s rights and male allies working with men and
boys for gender equality.
Dean Peacock, Sonke Gender Justice, South Africa
Comment: Growing interest in work with men…
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I think that one of the
main issues, which is
very important now, is
the issue of sex workers
and the rights of sex
workers, as opposed
to sex workers being
trafficked. There is a
very strong lobby in
the United States that
includes a large number
of ‘so-called’ feminist
groups, who now argue
that any person who
has sex for money has
to be trafficked. And
they have actually now,
in their definition in the
protocol on trafficking,
that if you have sex for
consideration of money,
then it is determined to
be sex trafficking.
It means that women, who are
adults and entering sex work on
their own volition, willingly and
by consent, are considered to be
trafficked. If trafficking is going to
be adapted to mean that, then the
law would take its course by the
police arresting these people and
issue that has to be addressed with
respect to women’s right to health
and prevention against HIV, and
the consequences of HIV that are
being burdened upon women. The
result is that people are dying.
As Special Rapporteur, I am
not going to decide on my own
what should be the priorities. I
think there has been a large
number of developments on the
issues of HIV and health and
human rights, not only because
the international humanitarian and
UN organisations recognise the
rights of marginalised groups, but
also, because of the community
empowerment and the way that
the HIV movement has been
mobilised. It is very important to
assimilate those lessons, which I
taking them into custody, where
they may be put into rehabilitation
homes, as in India, where there are
no facilities at all for women. That
is one issue.
The other issue is that ‘socalled’
normal women are being
subjected to violence and that
is not talked about. It is not an
issue that is considered to be
worthy to be talked about in the
HIV world. That is a tragedy,
because HIV is closely linked to
violence, as is health. And if a
woman becomes HIV positive,
more violence ensues, which I
think the movement has to take
up. And unfortunately, I don’t see
it being taken up in the coming
period for various reasons. It is
just ignored. It is a very critical
…violence
… not an
issue that is
considered
to be worthy
to be talked
about in the
HIV world…
In my opinion…
Emerging hot issues
Anand Grover, Special Rapporteur on the Right to Health
65
Emerging hot issues
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ALQ incorporating Mujeres Adelante 66Emerging hot issues
not you are spending too much
on HIV. The question is around
whether or not the deployment
of resources is skewed. So the
argument that is being posited is
‘no’. You are not providing enough
money for the other diseases.
When enough money for other
diseases happens, then you can
have a rational balancing out. All
the health issues have to be taken
together and the kitty has to be
enlarged.
It is the responsibility of the
HIV movement to ensure that
other diseases, primary care, and
the health system get their due
resources. And the question is
whether or not the HIV positive
persons’ movement is going to
take up other diseases, such as
hepatitis and TB? This is going to
test the HIV positive movement
because, as I see it, if they don’t
take these issues up, it is going
to take away the ground under
their feet.
propose to do. Access to treatment
will be one of the priorities, not
only limited to HIV treatment, but
broadening out to the diseases,
which impact on HIV.
Another priority will be the
deployment of resources for
health, not only HIV, but also
other areas, like the primary
health infrastructure. Similarly,
I will focus on the deployment
of resources for, and prioritising,
the marginalised groups’ issues,
including MSM and sex workers
issues. Not to be seen in isolation,
I will also focus on the particular
role and position, women and
children occupy. These are some
of the issues that a rapporteur
would need to take up in the
next three years. I do not want
to predetermine the agenda
on my own basis. I think it is
very important to actually have
consultations with various groups
to find out what they think. Having
said this, I also want to cooperate
with governments, who are trying
to solve problems. It is important
that a collaborative effort is
embarked upon.
One of the other key issues,
in the narrow sense, is expanding
the agenda of HIV positive
persons’ groups. It is important
to understand, that unlike
other diseases, HIV has been
able to develop a community
empowerment, which has not
been seen earlier at all. Because
of this, ART had to be provided,
because the moral issue became
so important. That issue is going
to be a big issue now in terms of
sustainability. Now with the debate
that is going on, the question is
whether or not that is sustainability
at a local level or sustainability
globally. And it is not only about
HIV anymore and whether or
…another
priority
will be the
deployment of
resources for
health…
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67
Sex work is work S
tarting with the historic
Sonagachi project begun
by women sex workers
in Kolkata in the 1980s, Reynaga
demonstrated that sex workers
have organised, through their
work, to protect themselves from
AIDS. Sex workers in Kolkata
have a 5.17% prevalence of HIV
infection, while other cities in
India, such as Mumbai, have HIV
prevalence rates as high as 54%.
Sex workers have mobilised
all over the world to overturn
criminalisation, and to meet with
the Global Fund and UNAIDS.
However, in spite of these
major successes in international
recognition, Reynaga pointed
out, sex workers are subjected to
violence through government antiprostitution
policies. In Cambodia,
for example,
…anti-prostitution policies
have been approved under
great pressure from the U.S.
– and now, as a result, sex
workers are being arrested
under the pretence that they
are victims of slavery and
trafficking…
Ida is a Professor of Anthropology
at the University of New York
Graduate Center.
In Focus…
Sex work is work and the
workers are organised!
Elena Reynaga (co-authored with Anna Louise Crago) delivered the first plenary
speech by a sex worker. ‘We want sex work to be recognised as work’ said Reynaga.
‘Sex workers are not the problem; we are part of the solution’.
Ida Susser
Special Edition – October 2008 ALQ
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In Chile, women living
with HIV and/or AIDS are
forcibly sterilised, because
the doctors ‘decide’
that they shouldn’t bear
children… In Brazil, the
State ‘decides’ not to
provide adequate sexual
and reproductive services
to HIV positive women
in prison… In Mexico,
hospitals and doctors
‘decide’ to deny services
to HIV positive women
that are pregnant.
Stories of women who face
violations of their reproductive
rights occur from South to North
of the Latin America Region.
In all of these cases, doctors,
prison authorities, husbands or
communities are speaking for the
women, taking over decisions
that affect women’s bodies and
lives. As Niza Picasso from ICW
Latina says,
…they assume that we, as
HIV positive women, don’t
have reproductive rights,
because we have HIV…
For a very long time, sexual
and reproductive rights were
mainly linked to HIV prevention.
However, as Maria Antonieta
Alcalde from IPPF affirms,
…today there is a greater
recognition of the urgency
of addressing the sexual
and reproductive rights of
women living with HIV…
According to UNAIDS,
approximately 500,000 women
are living with HIV in Latin
America and the Caribbean.
The majority of these women
face violations of their sexual
and reproductive rights. The
international human rights
treaties that have been ratified
by most of the Latin American countries protect the
right to reproductive autonomy, privacy, dignity,
non-discrimination and equality. It is necessary to
translate these commitments into concrete actions,
to ensure that women are the ones making decisions
that affect their bodies and lives.
Ximena is the International Advocacy Director of the
Center for Reproductive Rights, USA.
68Who should decide
…necessary to
translate these
commitments
into concrete
actions…
Special report
Who should decide…
Ximena Andion
I’m happy to be here, because I feel like there is a
lot of focus on violence against women. In different
groups, initiatives are starting to focus with more
attention on what each other is doing. So, I think we
have more ability to actually strengthen what we are
individually doing to collectively be stronger in our
response, and I’m interested in what may emerge
from this. I’m hoping that we can have a conference
in Africa next year that brings together the grassroots
groups to share their experiences and models of
responding to violence against women.
Anne-christine D’Adesky, PulseWire, USA
Comment: To collectively be stronger…
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69
Child survival and reproduction
widow who found that she
was HIV positive, when her
husband died seven months
after their marriage, noted that,
in India and elsewhere, many
widows are both victimised
and impoverished. After their
husband dies, women may be
exposed to family violence and,
while their boy children may
be taken away from them, their
daughters are left to share their
mother’s poverty. However,
like Kousalya herself, widows
have begun to form strong and
supportive networks, to go
out to work and to speak for
themselves.
We know that girl children
have significantly different
survival rates, than boy children.
In a picture shown by Anna
Coutsoudis, in her paper
on breastfeeding, we saw a
mother with twins, where the
hospital had recommended, she
breastfeed the boy and formula
feed the girl. The boy thrived
while the baby girl, clearly
malnourished in the photo, died
the following day.
Coutsoudis’ main point,
Families, Richter stated,
are the best place for
children to grow up
and must be supported and
strengthened. She pointed
out that, far from neglecting
children, families have stretched
their efforts far beyond their
resources to care for children
with AIDS. A Botswana study
documented that families
spent 25% of their household
budgets on each sick child.
Because of this commitment to
their children, families forego
education and even food.
Orphanages are not the
answer. According to Richter,
they cost ten times as much to
raise each child and, in addition,
children lose emotional and kin
support and do not survive as
well as they do in families.
To address these overall
challenges, Richter called for
renewed programmes of social
protection. She demonstrated
clearly what has been a
centrepiece of many critiques,
since the1980s structural
adjustment programmes, that
without a strong government
investment in the support of
poor families and their children,
we will not be able to address
the needs of children in the
AIDS epidemic.
By the end of Richter’s
presentation, it was obvious why
our efforts through NGO’s and
microfinance, well-intentioned
and crucial for minimal survival
at the moment, cannot possibly
make up for well-directed public
investment in entitlements
and social welfare for the
population.
We might wonder, however,
why Richter, throughout her
presentation and in handouts,
never addressed the issues of
women and mothers, or detailed
her analysis of families by gender.
She talks of poverty, but we all
know that it is women, who are the
poorest all over the world.
In a panel, Impact of AIDS
on Human Development:
Reproduction in Social Context,
organised by ATHENA members
with the help of ICW and the
World YWCA, where over 500
people crowded into a session
room, Kousalya, an Indian
…begun to
form strong
and supportive
networks…
In Focus…
Child survival and reproduction in
social context
Linda Richter’s plenary demonstrated that a healthy mother is what is necessary for
a healthy childhood. Richter reframed the question of child survival from a narrow
focus on ‘AIDS orphans’ to a broader understanding of the need to support poor
families in the age of AIDS.
Ida Susser, Zena Stein and Marion Stevens
…need to
support poor
families in the
age of AIDS…
Special Edition – October 2008 ALQ
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ALQ incorporating Mujeres Adelante 70Child survival and reproduction
treatment regimens and how,
first time options of Evafirenz
and Tenofovir are contraindicated
in pregnancy, and that
a common response of health
workers is to tell women not to
get pregnant − noting that this
was reminiscent of population
control. Even if we don’t have
all the answers, she argued that
it was important to start working
towards guidelines for women of
reproductive age, and map out
the continuum of care, options
and question marks.
Following Stevens’ thoughtful
and detailed discussion, Gracia
Violeta Ross powerfully described
her own experiences, which
dramatically highlighted the very
themes Stevens had raised. As an
HIV positive woman from Bolivia,
31 years of age, Ross wants very
much to have her own children. As
a member of ICW, she is a highly
informed and educated global
activist and spokesperson for
people living with HIV, and as she
noted, expected to be a model of
behaviour. Expecting widespread
condemnation, she courageously
announced that she wanted a baby,
just like any other woman, and
was having unprotected sex in the
effort to conceive. In a discussion
afterwards, Ross noted that she
had explored every avenue and
that since her viral load was
undetectable, she felt that she was
doing the right thing.
Ida is a Professor of Anthropology
at the University of New York
Graduate Center.
sharply illustrated by the
same photograph, was that
breastfeeding promotes child
survival. In countries with an
infant mortality rate higher
than 25 per 1000, exclusive
breastfeeding saves babies’ lives
in the long term. Replacement
feeding may eliminate the
transmission of HIV only to
increase the rates of death from
diarrhoea and other diseases.
Coutsoudis called for a return to
the normalisation of exclusive
breastfeeding, widely practised
in most of the world, before
the commercialisation of
formula and baby cereals. She
recommended that women in
poor countries could exclusively
breastfeed, with support for
expressing and saving milk
when they worked, even quickly
boiling it to kill the virus. She
suggested that, in light of all
the advantages of breastfeeding,
women in middle income
countries should be allowed
the option to nurse their babies
using similar methods.
In the opening paper on
this panel, Marion Stevens
called for treatment guidelines
for women of reproductive
age. In reviewing how vertical
transmission programmes
aimed to treat mothers and their
unborn, she showed how this has
prized treatment for preventing
transmission to children over
treatment for mothers. At the
same time, she outlined how
there needs to be more explicit
clarity on contraceptive options,
and to affirm women’s right to
a choice to a healthy pregnancy,
or a choice to terminate a
pregnancy. Given that some 50%
of pregnancies are unplanned,
she suggested that there is a
need for greater engagement
on these issues, and noted how
current prevention activities
are negative, not life-affirming
and essentially controlling. In
being specific, she highlighted
…has prized
treatment for
preventing
transmission
to children
over treatment
to mothers…
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71
We are part of the solution
No somos el problema,
somos parte de la solución.
– We are not the problem;
we are part of the solution.
[Maria Consuelo Raymundo,
sex worker, RedTraSex,
El Salvador]
Remember: nothing about
us, without us. [Rachel
Watton, sex worker, Scarlet
Alliance, Australia]
The voices of sex workers
– among session presenters and
attendees – were heard loud and
clear at the session, Prevention
Programmes with Female Sex
Workers. While session presenters
discussed a range of strategies
and research findings regarding
effective HIV prevention
programming with female sex
workers, perhaps the strongest
messages came directly from sex
workers, arguing for increased
participation and representation
in HIV prevention and research.
Frustrated by pervasive attitudes
that claim sex workers are
primarily responsible for engaging
in safer sex practices, without
acknowledging that clients must
equally share in the responsibility;
that they are to be blamed for HIV
transmission; and that they are
viewed as the ‘objects’ of research,
rather than active participants in
HIV prevention programming,
female sex workers argued that it
is time to acknowledge their hard
work, their intelligence, and their
contributions to HIV prevention.
The session opened with
two researchers, who presented
quantitative data on successful
HIV prevention strategies
among sex workers. Their work
demonstrated how peer-led
initiatives resulted in increased
condom use and distribution in
India; and long-term behaviour
change among sex workers in
Nigeria. This research, however,
raised questions about the
participation of sex workers
themselves, and about the
perception of sex workers as
merely ‘informants’, rather than
participants in HIV prevention
work. As one sex worker asserted
…we no longer want to be
considered a ‘risk group’…
we want to be part of the
work, not just informants…
– prompting applause from
many of her peers in the audience.
The most enlightening and
inspiring presentations came
from sex workers themselves.
Maria Consuelo Raymundo, of El
Salvador, and Rachel Watton, of
Australia, each shared stories from
their own experiences working
with other sex workers on HIV prevention. The success
stories of their respective organisations – RedTraSex
(abbreviation for Red de Trabajadores Sexuales,
Network of Sex Workers) and Scarlet Alliance –
demonstrate that communities of sex workers have the
strength and power to ‘fight’ stigma and discrimination
on their own terms, and in their own voices. Sex
workers in the audience heartily applauded the work
of these women and their organisations, and as one sex
worker commented:
…We are ready; we sex workers are those, who
need to be at the forefront, working on HIV
prevention and fighting discrimination…
I congratulate you!
Daisy is a Doctoral Student
at the University of New York.
In Focus…
We are part of the solution
The voices of sex workers – among session presenters
and attendees – were heard loud and clear
Daisy Deomampo
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ALQ incorporating Mujeres Adelante 72Lesbians lost
violence against women (VAW)
and HIV and AIDS is of particular
importance to lesbian and bisexual
women, but also that the issues
of empowerment of women and
women’s rights are ones not so
easily separable from questions of
rights for ‘sexual minorities’ as it
may at first appear.
The path to ending violence
against lesbian and bisexual
women remains less apparent,
given the two examples provided
by Mandishona. While the need
for legal reforms and protection
for lesbians in Zimbabwe seems
obvious, the South African example
should give activists pause; the
rights of lesbian and gay people
to live free from discrimination
is enshrined in the South African
Constitution, and South Africa
was the fifth country worldwide to
legalise same-sex marriage – the
first to do so in Africa.
Nevertheless, stigma and
violence against lesbian women
remain endemic in the country,
suggesting that legal strategies
may only be a starting point.
Kate is a Doctoral Student at the
University of New York.
The debate over the
meaning of ‘gender’,
between a women’s
rights framework and
comprehensive gender
framework, in the
forthcoming UNDP
guidelines for national
strategies, has been
widely lamented for, at
times, seeming to pit
the needs and interests
of ‘sexual minorities’
against those of ‘women’.
The presentation by Patience
Mandishona, as well as several
comments from floor speakers, at
the seminar Women’s Rights Equal
Women’s Lives: Violence Against
Women and HIV, suggested that
this framing of the debate ignores
the needs and experience of
lesbians, bisexual women, and
female-to-male transgendered
persons, when it comes to HIV
and AIDS.
Referring to what Human
Rights Watch has described as
a ‘pattern of violence’ targeting
lesbians in South Africa,
Mandishona called to mind the
brutal murders of Sizakele Sigasa,
Salome Masooa, and Thokozane
Qwabe, as well as the widely
publicised gang rape and murder
of South African soccer player
and activist Eudy Simelane,
which have all taken place in the
last year, among countless other
attacks against ‘queer women’.
She then warned that the wave
of violence is beginning to
‘spread’ into Zimbabwe, where
Mandishona works as an advocate
for lesbian and bisexual women.
Her organisation, Gays and
Lesbians of Zimbabwe, (GALZ),
has a difficult task in its efforts
to ‘fight’ for gay, lesbian and
bisexual equality, given that
homosexuality is outlawed, and
has been declared intolerable
by President Robert Mugabe.
President Mugabe has also
commented that lesbian women
and gay men are ‘worse than dogs
or pigs’. Mandishona argued
that this level of stigma against
lesbian and bisexual women
increases their risk for violence,
including sexual assault and rape,
and consequently their exposure
to HIV. This insight makes clear
not only that the intersection of
In Focus…
Lesbians lost in the
debate on ‘gender’
Kate Griffiths
…ignores the
needs and
experiences
of lesbians,
bisexual
women, and
female-to-male
transgendered
persons…
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73
Comment
I think we are going to see a greater and greater
convergence of health and human rights with
human rights and human development movements
generally. If you think about the health threats
to people today, they are increasingly going to
involve things like bad air, bad water, global
warming, climate change, and such. This
converges with the increasing recognition in Social
Epidemiology that it is not the thing you die of
that you have to worry about. It is not the virus
that infects you, but the conditions which created
your vulnerability to that virus in the first place.
It is recognising that those conditions are things
like social inequality, gender inequality, economic
inequality and the structural violence that turn
those conditions of inequality into health outcomes.
Those are, of course, the same kinds of problems
that are exposing people to excessive vulnerability,
because of lack of water and sanitation or crop
failure and lack of food.
So, I think for those of us working in the health
and human rights movement in AIDS, the question
is how can we reach beyond, how can we do what
we do to ensure that people living with HIV, and
at risk of HIV, get what they need, to deal with the
virus, while at the same time, we are trying to see
where we are really working in concert, or should
be working in concert, with people we never think
about – such as people, who think about food
supply, water, or violence. Because these are all
really issues that are related to what we do, and we
are all really part of the same movement.
Scott Burris, Professor of Law,
Temple Law School, USA
Comment: We are
all part of the same
movement… Women living with HIV in the Chinese society
face a lot of discrimination. People will say
that she was with different partners and so
on. They might lose their job. People are still
afraid to become infected. In Taiwan, if a house
owner found out that people, or babies, are HIV
positive, they will not rent the house to them, or
even ask them to leave.
I was so interested in one of the sessions, because
one speaker said they work with lawyers. My
husband is a professor of tax law, not human
rights law, and I have lots of friends who are
lawyers, but I have never heard of lawyers
working for women’s rights and HIV and AIDS.
When I go back, I will try and reach these
lawyers, and ask them if they would like to do
something for human rights and HIV and AIDS
in Taiwan.
I think in the community, the people need to
talk about this, I feel like we should do more
things, not just education and promotion. It is
very important to prevent, but we still need to
do something to meet women’s needs.
Ping Lee, YWCA, Taiwan
Comment: To meet
women’s needs…
I would like to say that even if we find a medical
solution, if we don’t end violence against women,
we will always have AIDS.
Martha Val, USA
Comment: Violence
against women…
Special Edition – October 2008 ALQ
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ALQ incorporating Mujeres Adelante 74Taking stock
Now the conference is
drawing to a close. We
have worn ourselves
out travelling back and
forth between buildings,
meetings, and searches
for elusive friends and
contacts. Carrying
armfuls of materials and
essential papers, we
slide into fascinating
sessions all over the
Global Village, always
heading back to the
Women’s Networking
Zone, or our home
base at the ICW booth.
Dialogues, discussions
and arguments have
taken place in the
Women’s Networking
Zone, and at the Positive
People’s Zone, among
many others. It has been
a long week and yet, it is
flown by.
Now it is time to take stock.
Among women what were the
areas, which sparked the most
controversy or interest in the
Global Village? In our opinion,
three areas have created the
most informative, yet, contested
discussions and debates. What
is clear is that we do not always
agree. No one can claim position
as the only true feminist one.
In the first issues of Mujeres
Adelante, Anand Grover suggested
that sex work would be an
emerging issue at the conference.
Other articles correctly identified
other important issues for
women, which included male
circumcision, criminalisation,
and violence against women. In
fact, all these were the subject of
ongoing discussion and debate.
Nevertheless, we felt that there
was a far greater realisation in
Mexico that women, including HIV positive women,
are part of all the proliferating ‘identities’ claiming
space in the Global Village – sex workers, IDUs,
indigenous people, transgender women, and HIV
positive people’s networks. Steps
were also taken to acknowledge
that although lesbian women may
not be particularly vulnerable
to the sexual transmission of
HIV through women-to-women
sex, they may be IDUs, or sex
workers, or occasionally have sex
with men – all of which put them
at risk of HIV transmission.
It became increasingly clear
throughout the conference, that
just because we are women, it
does not necessarily follow that
we agree on how to define, let
alone solve, the hurdles women
…strong
determination
to work
together for
common goals,
and to listen
to others’
positions,
even when we
disagree…
Reflections…
Taking stock…
Reflections on the Run
Sue O’Sullivan
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75
Taking stock
say, HIV positive women, you had
to use the word ‘woman’, or she
might get lost somewhere behind
the word ‘gender’. Someone else
reminded us that gender is very
fluid and does not refer only to
‘women’ and ‘men’. What about
transgendered people, she asked?
Lesson: A gender analysis
is essential to an in-depth
understanding of how women,
men, transgendered, intersect,
and others play out their lives – in
all areas. It is informed by the
intersection of all the other ‘forces’
in our lives, including class, race
and sexuality. We have to be
specific about exactly who we
mean when we talk about gender.
There are many other things
we wanted to say, but we are
running out of space and time.
And we are certain that each
participant in the Women’s
Networking Zone, and in our case,
ICW, would want to raise different
issues. We have not talked about
criminalisation at all, which really
featured strongly throughout the
week, but we will have to leave
that until the next time we join up.
Lesson: There is always
too much to talk about and too
little time at international AIDS
conferences. But, we had a fine
time trying!
Sue O’Sullivan and Luisa Orza
have really enjoyed being
correspondents for Mujeres
Adelante!. Thank You!
confront in the AIDS epidemic.
But let us make it equally clear
that there is a strong determination
to work together for common
goals, and to listen to others’
positions, even when we disagree.
We value hard tussles over
important issues, which will place
women, and HIV positive
women, right at the centre of
AIDS discourses.
On the ‘hot topics’, the
conference saw plenty of
enthusiasm around plans to rollout
medical male circumcision
projects. Women were divided on
the issues, although our guess is
that more feminist health activists
were wary than not. But some
were in favour. A UNDP women’s
health worker said in a Women’s
Networking Zone session,
…Why not? It might help and
won’t do any harm…
But other women are more
cautious. The data can be
interpreted in different ways,
and the numbers of separated
foreskins needed in order to make
a difference may be much more
difficult to achieve, than is being
suggested.
Lesson: What we all agreed
with, is that male circumcision
is a gender issue, and as with
all gender issues, an analysis
throws up complexities and
contradictions. This is not a bad
thing! A gender analysis which
recognises complexity and
context will enable us, as HIV
positive activists, or women
engaged in any number of ways
in work around HIV and AIDS,
to develop a vital and applicable
‘politics of gender’.
Other ‘hot topics’ included
gender-based violence, or violence
against women. Mujeres Adelante
carried constructive articles on
this subject at the very beginning
of the conference. This was useful
for women taking part in the
unfolding workshops, dialogues
and debates. In one session,
women debated the meaning
and uses of the words ‘gender’
and ‘women’, trying to settle
on when and where to use these
words. This session illustrated
how important language is. Some
grassroots participants reported
that their members did not know
what gender meant; while one
woman made it clear that gender
was a way of understanding the
relationship between women and
men. But, if you wanted to be
specific about a need of, let us
…the
conference
saw plenty of
enthusiasm…
…a gender
analysis which
recognises
complexity
and context
… to develop
a vital and
applicable
‘politics of
gender’…
Special Edition – October 2008 ALQ
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ALQ incorporating Mujeres Adelante 76The last word
ALQ Special Edition – October 2008
Supported by Oxfam Australia.
Editors: Johanna Kehler jkaln@mweb.co.za
E. Tyler Crone tyler.crone@gmail.com
Photography: Johanna Kehler jkaln@mweb.co.za
DTP Design: Melissa Smith melissas1@telkomsa.net
Printing: FA Print
www.aln.org.za
www.ATHENAnetwork.org
Give females control
A group of about 50
women’s rights activists
gathered on Wednesday
morning in front of the Media
Centre to demand female
condoms.
Interviewed by the media,
Fiona Nicholson, TVEP, South
Africa, pointed out that the
failure to provide female
condoms is nothing less than a human rights violation.
Demanding explanations, she said:
…We know the HIV pandemic is a feminised pandemic,
we know that women are more at risk of HIV infection,
and we know that female condoms do prevent the risk
of HIV infection. So, someone needs to explain why
female condoms are not available. Someone needs to
explain why women are denied their right to use female
condoms…
Using the tune of John Lennon’s song ‘Give peace
a chance’, everyone joined into lyrics of the Female
Condom Song singing ‘all we are saying, give females
control; all we are saying, give condoms a chance’.
Supported by Dance4Life, the singing, dancing and
chanting continued, a female condom demonstration
took place, and the halls of the conference centre were,
for a short while, filled with the question ‘where are the
female condoms?’…
Special edition incorporating ALQ and Mujeres Adelante