Project Description

In Focus…
Women’s issues dominate plenary? YES!
Whats inside:
Special report:
Care of women
living with HIV
Feedback from
the Global
Village…
Female condoms
= sexual
pleasure…?
News from the
‘margins’…
Building visibility
Women’s
realities…
Women’s role in
violence
Women’s voices…
Women in the
zone
Regional voices…
Testing wives in
Pakistan
In our opinion…
What’s the story,
morning glory?
The first predominantly female
plenary of the conference
opened with a grounded
discussion of vaccine
development, and proceeded
with a presentation by Zambian
paediatrician Chewe Luo. Dr.
Luo focused on several national
programme options, and shed
a particularly positive light on
Malawi’s B+ initiative, which
advocates lifelong treatment of
women living with HIV beginning
with diagnosis at pregnancy.
Sceptics of the B+ programme
maintain that a lifetime
regimen for high CD4 count
women, particularly in areas
where access to care is limited,
could lead to low adherence and
the possibility of resistance to
medication. There is also a question
of resource allocation; will the
level of investment in the minority
of women who seek prenatal care
lead to a disparity between them
and other women and men in their
communities? Women who are sick
should be treated, B+ however,
raises the question of whether
we should treat women who are
infected, but not yet ill.
Dr. Luo was followed by Linda
Scruggs, a local HIV activist.
Scruggs relayed the difficult road
that had led her to the Wednesday
morning stage. She began by
describing the ‘cold November day’
in 1992, when she received her HIV
diagnosis. At the time, Scruggs
was pregnant with her youngest
child. Her physician informed her
that if she kept the child, she could
not expect to live more than three
years and, with an abortion, she
might live five. She was twenty-five
years old. In a day when a newly
diagnosed patient of her age will
be told with confidence that they
can expect another fifty two years
of life, anecdotes like these are
a chilling reminder of how far
we have come. Scruggs, however,
would have been remiss if she did
not note the fraught road ahead,
and particularly the continuing
marginalisation and gender
disparities. In a resounding call to
action, Scruggs did not ask for a
place at the table of HIV planning
and prevention, she demanded it,
on behalf of all women.
If Scruggs appealed to the
personal struggles of the HIV
epidemic, Dr. Rao Gupta of
UNICEF brought the conversation
back to epidemiological strategy.
In particular, she focused on what
could be called the ‘lost years’ of
the lives of young women, when it
comes to socio-medical analysis.
Studies have well-documented the
first five years of girls’ lives, but the
academy does not find these girls
again until they reach eighteen.
Dr. Rao Gupta called for initiatives
focused on girls between ages ten
and fourteen, a period in which
Mujeres Adelante Thursday•26 July 2012
Daily newsletter on women’s rights and HIV – Washington 2012
Ida Susser, Jonah Kreniske, Zena Stein
2 Thursday • 26 July 2012
she maintains their sexual attitudes and
practices are still malleable, and they are
likely still HIV-negative. Between ages ten
and nineteen, girls make up 60% of the
global epidemic. Even in Eastern Europe
and Central Asia, where the disease is
often portrayed as a man’s affliction, girls
make up 44% of the youth epidemic.
With numbers like these, provided by
Dr. Rao Gupta, the quote on which she
ended her presentation has particular resonance: ‘we invest so much
in keeping children alive in the first decade of life; we must not
lose them in the second’.
Indeed, to echo Dr. Rao Gupta, it is not enough to strive for an
‘AIDS free world’. We must strive for a just world, free of AIDS.
Ida is a professor of anthropology, Jonah is a public health researcher,
and Zena is an epidemiologist of Columbia University.
…she did not
ask for a place
at the table of
HIV planning and
prevention, she
demanded it,
on behalf of all
women…
Zena Stein
The trials and tribulations
of vaccine research
Dr. Barton Haynes who has been
working to find an effective vaccine
against HIV for 27 years, gave us
an intriguing account of the rocky
path these studies have followed.
Effort has succeeded effort, clues
pursued that turned out to be blind
alleys. However, something new was
learned with each disappointment,
which is the way of science. From
the most recent experiences what
was termed ‘broadly neutralising
antibodies’ emerged as potentially
crucial phenomena. Next Dr. Haynes,
with admirable clarity, outlined the
next steps to pursue this lead by the
collaborating scientific teams.
While guarded optimism promises
the eventual success of this research,
we clearly have to be patient. Because
a powerful vaccine would seem to
offer the most effective preventive
method to eliminate HIV, and there
is every reason to facilitate and fund
this essential research, yet we
cannot relinquish or even delay any
or all other preventive methods, like
those discussed by Dr. Chewe and
Dr. Geeta Rao Gupta.
Zena is an epidemiologist
of Columbia University.
Sirka Amaambo
Intergenerational dialogue on
young women and SRHR
‘I remember growing-up in the village; I remember loving the feeling of going to
school. My father demanded that I leave school, because it is no place for girls. He
thought it would be better if I get married to an older man’. This was the story told
about a young Tanzanian woman, who was forced into an early marriage at the
tender age of 10.
The story of the Tanzanian woman’s story was narrated by three story tellers,
each reading a section of her experience during an Intergenerational Dialogue
on Young Women and SRHR convened by the World YWCA in the WNZ on
Wednesday. In narrating the story by different women, a clear message that
gender-based violence is not limited to women from a certain group, country or
ethnicity was portrayed.
‘I don’t remember my wedding. I remember feeling moments when that fat man and
his belly was on me. I remember being afraid and alone when guests were no longer
around. I hear some women like it when men touch them, I don’t’, continued the
narrators. ‘He beats and rapes me and tells me girls aren’t good for anything. I felt like
I was good for nothing. I remember the day I walked to the clinic. It is far but I have
walked that distance many times’, the story continues. She says she remembers
consenting to an HIV test. The nurse gave her a look of judgement, pity and
scorn. ‘You’re positive’, she said. ‘I don’t remember walking home from that clinic’.
This is but one of the many stories of violence against women shared during the
conference. According to the World YWCA, girls are the first to be pulled-out of
school. They end-up with no work, are forced into early marriages, and are at risk
of acquiring HIV through sex work to provide for their children.
Talks, policies and high level meeting are held annually. However, these seem
to have little effect on the lived experiences of so many women and girls at
a community level. Women’s and girls’ risks to violence and abuses, as well
as ‘harmful practices’, such as ‘early marriage’, and risk of HIV exposure and
transmission seem unabated, despite the many commitments…
Sirka is with ARASA.
Thursday • 26 July 2012 3
News from the Global Village…
Female condoms = sexual
pleasure…?
Never has female condom use been made to sound as pleasurable
and exotic as was presented at the dialogue on sexual pleasure
on female condoms in the Global Village on Wednesday.
‘I have a sex toy to show you from India, which has two rings. One
ring rubs against the clitoris and the other ring goes inside and it
makes you tickle at the back of your eyeballs’. These were the
words of Anne Philpott a representative from the Pleasure Project,
describing the female condom. She says the condom allows for
deep thrust and makes it nice and smooth, while gently rubbing
and demonstrating with her hands.
The Pleasure Project believes that if you eroticise safer sex, more
people will practise it. The idea is to have fun, while practising
safer sex. Another female condom demonstrated was the ‘Cupid’,
a female condom exotically described and demonstrated. Cupid
comes fitted with a sponge. The sponge helps to keep the condom
in place and provides a cushion for men who prefer to be pushing
against something during intercourse. Female condoms come in
all sorts of sizes and shapes. A funnel shaped condom was made
for women who feel the ring is too big to insert. It stretches and
also keeps the condom in place. Women are encouraged to try
them all, and to programme pleasure into condom negotiation.
The organisers of the session, however, said that female condoms
are always referred to and demonstrated far too clinically. ‘When
you open the packet, you don’t know where to put it, where the cervix
is, and how to insert it. Don’t hold the condom with your fingertips.
Rub it, hold it. It heats up with body temperature and men love it’,
said one of the female condom demonstrators.
The session has shown that female condom use can indeed be
pleasurable, exotic, and sexy…and sex can be ‘fun’ and ‘safe’ at the
same time – which is a great concept! The question that remains
is how adaptable is this concept, given that most women live in
a societal context in which female condoms are extremely scarce,
and women have little to no power to negotiate conditions of sex
and condom use…
Sirka is with ARASA.
Sirka Amaambo
News from the ‘margins’…
Building lesbian &
WSW visibility in the
HIV response…
Where are the lesbians? – Is but one
of the questions raised for a long
time. Yet, lesbian women and women who
have sex with women are still invisible and
left out from the response to HIV, despite
the growing knowledge and evidence that
lesbian and women who have sex with
women are at risk of HIV exposure and
transmission.
Come join us for a discussion at the LGBTI
Networking Zone in the Global Village to
further interrogate as to why lesbian and
women who have sex with women are
continuously left out and kept invisible in
national and global responses to HIV, and
what needs to be done to make a difference
and to ensure inclusion.
Thursday, 26 July 2012
15:30-16:30
LGBTI Networking Zone
Speakers include:
• Gloria Careaga, ILGA LAC, Mexico
• Linda Baumann, OutRight, Namibia
• Maria Sjödin, RFSL—Swedish
Federation for Lesbian, Gay, Bisexual and
Transgender Rights, Sweden – (To Be
Confirmed)
Moderator ;
• Mabel Bianco – FEIM / IAWC / Women
ARISE
4 Thursday • 26 July 2012
are more likely to approve of
inequitable norms.
68% of women surveyed in
Zambia have experienced either
sexual or physical violence in
their lifetime and less than 20%
reported the abuse. The agreement
of inequitable gender norms and,
therefore, the justification of sexual
and physical violence greatly impede
women’s access to care and, as Tun
says, if women go to the authorities,
people will look at them and blame
them for the rape they experienced.
Although the barriers to accessing
support were briefly expelled upon
in Tun’s presentation, lack of
educational services is, of course,
a major factor. The Population
Council outside of ZPI has done
research showing that it is feasible
to work with law enforcement and
government agencies to provide
comprehensive care to the survivors
of gender-based violence. Zambia,
in 2011, passed the Anti-GBV Act,
and in May 2012, the Zambian
government adopted national
guidelines for the treatment of
survivors of GBV.
However, until the 48% of the
population that believes ‘if a woman
doesn’t physically fight back, you
can’t say its rape’, receives education
… gender-based
violence
prevention
services and
comprehensive
support and care
programmes
have to become
a priority…
Women’s Realities…
Perceptions of women’s role in violence
Sierra Mead
Waimar Tun’s presentation
on ‘gender norms and their
contribution to the prevention
of HIV programming in Zambia’
in Wednesday’s session
Gender: Reducing Vulnerability
and Reinforcing Empowerment
Opportunities reiterated the
rhetoric that continues to be
used in discussions about Sub-
Saharan Africa. Gender-based
violence and social barriers
not only contribute to the high
prevalence of HIV in the region,
but also impede women’s ability
to access education and seek
support.
The social factors that increase
women’s vulnerability to HIV
are the usual: sexual and genderbased
violence, economic disparities
and lacking capacity for condom
negotiation. As seen in other parts
of Sub-Saharan Africa, women in
Zambia who are 20-29 years old are
twice as likely to be HIV positive,
than their male counterparts. It
seems we’ve heard this all before…
and little change is occurring.
Tun however brought a refreshing
element to the table by presenting
the Zambia-led Prevention
Initiative (ZPI)’s recent survey that
investigates both female and male’s
perceptions of rape myths and
gender-based violence.
ZPI is an organisation that
focuses on increasing the use of
community-level interventions
through targeted approaches that
address gender-based violence and
power imbalances that strip women
of their basic human rights and
contributes to the transmission of
HIV. Throughout July and August
2011, ZPI conducted a base line
survey that took place in eight
provinces throughout Zambia and
questioned over 2,000 randomly
selected men and women. The
survey focused on gender-based
violence and rape myths that blame
women in justification of rape and/
or violence. The survey’s intention
was to collect a better understanding
of the population’s perceptions of
women’s role in violence and rape.
ZPI’s survey was composed of
statements that blame women for
the sexual violence they experience
and participants were asked if they
agreed or disagreed. For example:
‘if a woman doesn’t physically fight
back, you can’t say its rape’. 48%
of participants, men and women,
agreed with this statement. Other
questions evaluated attitudes on
gender norms. These questions
were rated on the Gender Equitable
Men Scale and included statements
like, ‘wife beating is acceptable
when: she refuses sex, argues with
the man, fails to perform chores’
etc. ZPI found that about 40%
of both men and women support
inequitable gender norms, over
40% of respondents agreed with
at least two of the rape myths, and
men with over two sexual partners
and services that change their minds, policy will only go
so far. Both gender-based violence prevention services and
comprehensive support and care programmes have to become
a priority if minds are going to be changed…and tides going to
be turned for women and girls.
Sierra is with the AIDS Legal Network, South Africa.
Women’s Voices…
Women in the Zone…
Global Village as an important
component of the International AIDS
Society Conference, the Women’s
Networking Zone (WNZ) has been
a place for formal sessions and
workshops on issues facing women
in the HIV epidemic and response,
as well as a place for conversation
and networking, brainstorming, and
socialising with new and old friends
and partners. In 2012, the WNZ is
bigger and more active than ever; here
women ‘in the Zone’ reflect on what the
space has to offer – beyond tasteful
decorations, loads of information and
publications, comfortable chairs and a
cup of tea.
Anna Mwalagho, Kenya and Silver Springs,
MD, USA
When I entered the Zone this morning I
was greeted with the welcoming vision and
sonorous vocal stylings of Anna, a poet and
singer originally from Kenya and now living
in the U.S.A. ‘I’m an artist’ she explains, ‘I write
about socio-economic issues in Africa – and AIDS
is a socio-economic issue. When I first heard of
the AIDS Conference six years ago, I had already
written the poem you just heard. But this is my first
time at the IAS Conference’. Anna found her way
to the WNZ after performing at the Women’s
Gala at the Carnegie Library. ‘Art’, she explains
‘can sometimes portray the missing element that
gets missed in other conference settings’. Anna’s
poem explains the ways in which HIV impacts a
whole family; ‘often women are the most infected
but also the most affected, because they have
to take care of their loved ones…I’m glad to see
women represented at the conference, but I’d like
to see a Men’s Gala or Men’s Networking Zone, to
see that men are doing something. The burden
shouldn’t be only on women’.
Maria de Bruyn
Maria is a researcher and advocate for women’s
sexual and reproductive rights. After speaking
at a session aimed at developing a research
agenda for women
living with HIV, she
finished answering
follow-up questions
about abortion
rights for women
living with HIV. ‘I’ve
attended a number of
sessions in the Women’s
Networking Zone
that should be heard
by a larger audience,
and which, frankly,
should be included in
the official conference
programme’. She
explained that this year seemed particularly
sparse on women’s issues outside of the Global
Village and the WNZ. ‘There aren’t as many
sessions on reproductive health and rights, and
sessions don’t include non-conforming women.
If a woman isn’t a mother or pregnant, if she’s
a young woman or a lesbian…then she is
underrepresented. I was shocked when I realised
that the findings for the Global Commission on HIV
and the Law didn’t include any recommendations
about violence against women who have sex with
women (WSW). Men who have sex with men are in
there, but women are left out’.
Manju Chatani-Gada
Coming off a session provoking dialogue with
young women about prevention, Manju, Senior
Programme Manager at Global Advocacy for HIV
Prevention (AVAC) shares: ‘This is the third session
I’ve been part of in the Women’s Networking Zone.
It’s a great space for discussion and dialogue. The
first session was about hormonal contraception
and HIV, and one about PrEP and what PrEP
means for women. We worked with Sister Love and
with the Athena Network. For this session, it was
wonderful, comfortable couches and atmosphere.
We had young women here who were very
engaged’. On the role of the WNZ in the larger
conference, she explains, ‘the Global Village helps
balance the conference….I’d like to see even more
participation in the Global Village. Women’s issues
[in terms of prevention] are in the conference, in
multi-sectoral sessions and satellite sessions.
But if I had to look at subgroups – say young
women and HIV positive women it’s good to have
more balance’.
Thursday • 26 July 2012 5
Thursday, 26 July
07:00-08:30 From Evidence to Programming: Gender and
Gender-Based Violence in the HIV and AIDS Response
Mini Room 1
What Africa Teaches Us: PEPFARís Transformation of the U.S.
Domestic HIV Response Mini Room 2
08:40-10:30 Plenary: Dynamics of the Epidemic in Context
Session Room 1
11:00-12:30 Challenges in Scaling-UP PMTCT
Session Room 2
The Oldest Profession: Is Sex Work, Work?
Session Room 8
Bad Manners at the Bedside: Stigma and Discrimination in
Health Care Settings Session Room 3
Community Participation in Policy Dialogue Mini Room 9
Everything You Have Ever Wanted to Know about Pleasurable
Safe Sex, But Were Afraid to Ask or How to Put the Sexy Back in
Your Safer Sex Programmes Mini Room 5
How to Integrate Human Rights into Treatment
for Prevention Programmes Mini Room 4
13:00-14:00 Seeking Justice: Litigating the Forced
Sterilization of Women Living with HIV GV Session Room 1
14:30-16:00 From Promise to Programmes:
Treatment as Prevention Session Room 2
HIV Women Throughout the Lifespan Session Room 4
16:30-18:00 The Future of HIV Prevention, Health
and Human Rights in Gay, other MSM and Transgender
Communities: Towards More effective Approaches with
ICTs in a Web 2.0 World Session Room 7
18:30-20:30 Exploring Alcohol Use, Gender-based
Violence and HIV/AIDS Mini Room 9
UPCOMING
EVENTS
*Collated by Kate Griffiths-Dingani
6 Thursday • 26 July 2012
Late yesterday evening, a small
group of women from Africa and
the United States met to share
lessons learned in efforts to
help women live positively with
HIV. Facilitators Angelina and
Ophelia from the organisation
of Women for Positive Action
drew on participants’ personal
experiences and a ‘case study’
of a young Nigerian woman to
expand our knowledge of best
practices and develop critical
responses for women newly
diagnosed.
The organisation is a global
initiative designed to address
specific concerns of women
living and working with HIV,
provide education and support
and enhanced quality of life in
the specific country contexts
facing infected and affected
women. The Women for Positive
Action is made up of healthcare
professionals, women living with
HIV, and community group
representatives from across
Canada, Europe, Latin America
and South Africa. The initiative
aims to empower, educate and
support women with HIV and
the professionals and community
advocates/leaders involved in their
treatment. The group explores
issues facing women with HIV and
provides meaningful educationbased
support to respond to these
needs and to contribute towards
an enhanced quality of life for
women with HIV.
Ophelia, originally from
Zambia, shared her story; now
‘somewhere past forty’, she learned
she was HIV positive when she
was 17 years old. She is now the
mother of two grown children and
serves on the board of Women for
Positive Action. Angelina got her
diagnosis in her twenties before
becoming a mother and activist
with the organisation.
Participants were presented
with a case study of ‘Mary Anne’,
a young 23-year-old woman
presenting at an STI clinic for
screening. The hypothetical
woman has a history of sexual
assault and a male partner who
has tested HIV negative.
Participants in the exercise –
who range from women who have
lived for years with a positive
diagnosis, to researchers in the
field of women and care, to
the sister of a newly diagnosed
woman just getting started in
learning about life with HIV –
discussed ‘Mary Anne’s’ possible
concerns and her path forward.
Facilitators help ‘turn the tide’ by
providing up-to-date information
on everything from transmission
mechanisms, to cultural
considerations, xenophobia, to
the potential medical and legal
consequences of breastfeeding for
positive women on treatment.
Meanwhile, women brought
information gleaned in other
conference sessions to bare on
‘Mary Anne’s’ complicated
case. Said one, an experienced
researcher in the field
I learned today in a session – I
never thought about before – but
many women don’t want to have
sex when they are pregnant, and
often cultural norms are such that
sex is bad for the pregnancy. At
the same time, their husbands
and partners are encouraged to
seek sex outside the relationship.
If they become infected during
this time, it means that their most
infectious period, the time when
an antibody test is still ineffective,
will occur during a woman’s
pregnancy, putting her and the
baby at risk, not only of infection,
but of not receiving proper care
and antenatal ART.
By the end of the session, ‘Mary
Anne’ – and the workshop participants – are in a much
better position. ‘Mary Anne’ has disclosed to a supportive
partner, protected her child from HIV transmission and
herself from stigma in her community by exclusively
breastfeeding for six months. One workshop participant said
I’m glad to know about the choices women have…I really
had no idea!’
By centering women’s choices and providing them with
the necessary information, Women for Positive Action is
helping to ‘turn the tide’ for women living with HIV.
Kate is an anthropologist and writer, who lives in Brooklyn, NY
and frequently works in Durban, South Africa.
…centering
women’s
choices and
providing
them with the
necessary
information…
Special report:
Turning the Tide in the care of
Kate Griffiths-Dingani
Women for Action will be hosting another session
on Thursday, 26 July 2012, focusing on the
Emotional well-being in women living with HIV,
from 14:30-15:30, with Ophelia Haanyama Ørum
(Sweden) and Ulrike Sonnenberg-Schwan (Germany)
*For more information Women for Positive Action, please
visit the website www.womenforpositiveaction.org.
Thursday • 26 July 2012 7
Ayesha Khan focused her presentation on the inability of wives’
in Pakistan to get tested for HIV during the session Gender:
Reducing Vulnerability and Reinforcing Empowerment Opportunities.
Like too many countries in the world, Pakistani women struggle
against the confinements set upon them by a patriotic, conservative
society. In fact, women’s mobility in Pakistan is so restricted,
information is so lacking, and cultural barriers are so strong, it is
estimated that less than ten percent of women in Pakistan are in
the position to make their own healthcare decisions, without first
consulting a man.
Stigma, conservatism, financial constraints, and little conviction to
discuss sex and HIV, result in many women not getting tested. Khan
and her team selected, through voluntary recruitment, 138 HIV
positive married men who had been on treatment for more than six
months to bring their wives to the clinic to get tested. Of the 138,
60% had wives who did not know their status or had never been
tested. Only 29% of the men participating had disclosed their positive
status to their partner, and even after learning their status, only 8%
were using condoms. With $14 given to the 138 men upfront, for 38%
had reported travel cost as the reason their wives had never been
tested, Khan’s team asked the participants to bring their wives with
them to the clinic.
68% complied, 22% reported bringing their wives to a different clinic,
and 20% took the money and ran. The most noteworthy aspect of
this study was that 94 women were given the choice to have an
HIV test – a choice, they would not have otherwise had. Khan saw
an increase in disclosure to their partners, as well as an increase in
condom use.
Women are entitled and have the right to have the autonomy over
their bodies and decisions affecting their bodies. However, this is
not the reality for many women in many societies. Gender norms
are just not evolving quickly enough, and women remain to be
‘disempowered’, whilst women’s access to health services, including
HIV testing, often depends on the man’s permission.
Sierra is with the AIDS Legal Network, South Africa.
Regional Voices:
HIV testing for wives in Pakistan
Sierra Mead
There has been much speculation at this
conference of how to fuse science with human
rights. Dr. John Ong’ech, from the Kenyatta N.
Hospital in Nairobi Kenya, is making strides
towards doing just that.
Dr. Ong’ech focuses on pre-conception care,
unintended pregnancy and family planning. Ten
years ago Ong’ech observed a common trend
amongst his female patients living with HIV. A quarter
of the women desired to have a baby in the future
so he created a pregnancy and HIV screening tool, or
guideline, that specialised in HIV comprehensive
care clinic (CCC) for both concordant and
discordant couples.
As introduced during the session on Maximising
Reproductive Possibilities and Choices for Women Living
with HIV, the pregnancy and HIV screening tool clearly
expounds different steps for healthcare providers
and services involved in family planning to follow,
clearly spelling-out advice specifically allocated for
different circumstances depending on the couple’s
scenario: whether both partners are positive, the
male is positive and female negative, or vice versa. By
using the HIV screening tool, it becomes the couple’s
responsibility to discover the best way to become
pregnant, and the healthcare sectors’ responsibility to
present safe options. Men are involved in the process
of conception, beyond the obvious physical part, and
discuss the plan of action that is best for both partner’s
health. In order for the screening to work, both
partners have to consent to learn their HIV statuses,
creating an important dialogue.
Dr. Ogn’ech’s method is fundamentally based on
integrating science and the protection of human
rights. There is lacking knowledge amongst women on
the existence of safe family planning options, but with
this HIV screening tool, women living with HIV can
effectively identify their reproductive health needs and
rights, and healthcare workers are provided with clear
guidelines for providing quality care for the couple.
Like many processes involving HIV, family planning and
pre-conception care comprise of complex factors, and
therefore, require a multi-disciplinary team.
It is essential to protect human rights while ensuring
quality health care is provided but Dr. Ogn’ech also
recommends involving peer support groups and
other reproductive health services in the process.
By using Dr. Ogn’ech’s screening process and steps,
there has been a reported 2% of preterm deliveries or
miscarriages and no fetal abnormalities, indicating that
the integration of healthcare and human right sectors
is feasible.
Sierra is with the AIDS Legal Network,
South Africa.
Fusing science with human rights… Sierra Mead
Supported by the Oxfam HIV and AIDS Programme
(South Africa) and the South Africa Development Fund
Editors: Johanna Kehler jkehler@icon.co.za
E. Tyler Crone tyler.crone@gmail.com
Photography: Johanna Kehler jkehler@icon.co.za
DTP Design: Melissa Smith melissas1@telkomsa.net
Printing: B&B Duplicators INC. bandbduplicators.com
www.aln.org.za www.athenanetwork.org
8 Thursday • 26 July 2012
In my opinion…
What’s the story, morning glory?
Luisa Orza
alcohol issues that result in exclusion from
services; gender-based violence, including
sexual violence and rape; sex work; the
need for solidarity and safety; women’s
individual and collective agency; and the
inspiring leadership of women living with
HIV. It was a story that raised the house to
our feet and brought tears to many eyes.
High level indicators, M&E and
accountability frameworks don’t tell
these stories. Indicators don’t often
count the number of women who
have agonised over whether or not to
continue a pregnancy; felt afraid to enter
a new relationship; felt alone, unloved
and unlovable. Or the women who have
reached out to other women, listened,
grown and gained strength with and from
one another; gone back to school, become
role models and advocates…. But these
stories can help us shape the indicators
that we do use, and how we use them.
And they can help us mould our advocacy
agendas, influence policy, and ultimately
shape the HIV response. Core HIV indicators
now capture data on women’s experiences
of intimate partner violence, as a result of
the hundreds and thousands of women
living with and affected by HIV who told
their stories of gender-based violence.
One woman’s story of being forcibly
sterilised, because of her HIV status,
became 3 stories, became 30 stories,
became a movement and a core issue
among HIV and women’s rights activists
and advocates, and is becoming
recognised by global policy makers and
high level agenda setting agencies.
Don’t let’s stop telling stories as part of our
research, monitoring and evaluation. They
are the most powerful tools we have.
Luisa is an independent consultant
and a women’s rights advocate.
Monitoring and evaluation
(M&E) are two words that seem
to provoke one of two reactions
in many of us working in the
field of HIV. Either our eyes glaze
over, or we cast around for an
escape route. The language
and mechanisms of monitoring
and evaluation seem technical,
jargonistic, intimidating and
remote from the realities of
our lives.
Donor demands for results and impacts
put pressure on under-resourced
and over-stretched programme staff,
and for those of us working in advocacy
networks, M&E poses an additional range of
challenges: advocacy is notoriously difficult
to quantify, since the outcomes of our
work are long-term and usually impossible
to attribute to a single agent or action.
Networks and organisations often value
processes as much as outcomes, and it’s
often in processes that much of what we
consider the meaningful outcomes of our
work are embedded. But often when we
report on these, we are told that these are
just stories, and do not constitute the kind
of evidence donors and policy makers are
looking for.
As a person who loves M&E, I nevertheless
grapple with these issues continuously. M&E
and advocacy are intricately linked, and
informing our advocacy efforts and – to my
mind – should be a stronger motivation for
doing M&E, than pleasing our donors. Storytelling
is both a powerful tool for women’s
advocacy and a vital starting point for
women’s empowerment. The process and
experience of being listened to, believed
and accepted – not to mention finding that
others may share similar experiences – can
be a changing moment in and of itself,
and may be the first step towards healing,
claiming ownership of our experiences,
and realising our own agency as women.
Women’s networks and organisations are
well-placed to provide safe spaces for this
kind of story telling.
The Women’s Networking Zone is
another space where women tell our
stories. Sessions tend to be informal and
intimate, with an emphasis on dialogue,
interaction and sharing. While the WNZ
doesn’t constitute the safe/closed space
that community organising can and
should provide, it is still considerably less
intimidating, than some of the more formal
conference spaces, where the emphasis
tends to be on science and ‘objective’
evidence. As a result, the WNZ is a space in
which many stories are told, and women
speak from their experience, and their own
and ‘owned’ knowledge, rather than from
the results of a comprehensive literature
review, or randomised control trial.
So it was remarkable to sit and listen (and
weep openly) to Linda Scruggs telling her
story in the conference plenary session
this morning. Story-teller extraordinaire,
Linda spoke from the heart about her
experiences of living with HIV. Her delivery
was unscientific, subjective, funny,
heartbreaking and intensely, immensely
human. And her story spoke poignantly
and forcefully to the complex mutually
reinforcing intersections of HIV and gender,
and the need for a gender transformative
HIV response, without using power-points,
statistics or graphs. Her story touched
on the stories of so many women living
with and affected by HIV. Decisions on
whether, how and when to have children,
often in the face of discouragement, or
worse, of healthcare providers; judgement,
self-stigma, loss of self-esteem; drug and
…story-telling is
both a powerful
tool for women’s
advocacy
and a vital
starting point
for women’s
empowerment…
…one woman’s
story… became 3
stories, became
30 stories,
became a
movement…