Project Description

In Focus…
HIV and sexual violence:
Toward an integrated response…
What’s inside:
Women’s Voices:
Marginalising
the evidence…
Women’s Realities:
They have no right
to do that…
Innovations and
intersections…
Special Report:
Looking beyond
what we think we
know…
In my opinion:
A shifting
narrative…
In 2009, SVRI sessions
examined the ways
in which masculinity
and traditionally
patriarchal social
norms correlate with
sexual violence.
Rachel Jewkes
presented evidence
suggesting that in
South Africa, men who
embody patriarchal norms
and associated behaviours
are more likely to have HIV,
and to perpetrate intimate
partner violence.
Both Jewkes and
Mazeda Hossain
presented research that
shows women who experience
sexual abuse are vulnerable to
depression, post-traumatic stress
disorder, and substance abuse,
and linked this vulnerability
to increased risk of HIV. In
this way the first SVRI Forum
highlighted that HIV prevention
responses and sexual violence
responses must be integrated in
order to be effective in meeting
the needs of those affected
by sexual violence; post-rape
care must go beyond legal
and socio-economic support
to include psychosocial
and mental healthcare, and
HIV responses must be
cognisant of the holistic
health needs and rights of
individuals, including needs
related to post-rape care and
primary violence prevention. In
addition, the Forum explored
the role of Post-Exposure
Prophylaxis (PEP) for HIV,
and considered it a critical
component of a comprehensive
rape/HIV prevention response. In
particular, the issue of adherence
to PEP was highlighted, and
Mujeres Adelante 15 – 17 September 2015
Newsletter on women’s rights and HIV •2015 SVRI Forum • Stellenbosch
Emma Aldrich
Since its inception, the SVRI Forum has recognised, explored, and interrogated
the links between sexual violence and HIV.
2 2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015
how the feelings many women
experience after sexual trauma,
including shame, blame, fear and
anxiety, can be real barriers to
consistent drug adherence, which
is critical to the effectiveness of
PEP in preventing HIV.
In subsequent years, the
Forum explored the public
health dimensions of sexual
violence and the vulnerability
of women in power inequitable
relationships, where violence
increases the risks of
HIV acquisition. In 2011,
Andrew Gibbs brought evidence
that in general, gender and sexual
violence are not sufficiently
integrated into National
Strategic Plans on HIV/AIDS
in Southern and Eastern Africa.
The 2013 Forum considered that
while gender-based violence has
been established as a driving
social force that significantly
impacts the HIV epidemic, hard
data remains largely unavailable
and the persistent gap in
information creates barriers
to planning and implementing
evidence-based interventions.
The 2013 presentations reiterated
the messages of previous
Forums, that poverty, gender
inequality, alcohol use, and
stigma all contribute to the
structural drivers that cause
HIV and sexual violence to
intersect and compound risks
and vulnerabilities. Subsequently,
the call was made for further
research and a more inclusive
approach to addressing
structural barriers to health and
rights across diverse sectors.
This year, during the 4th SVRI
Forum, the dual epidemics
of HIV and sexual violence
continue to demand our urgent
attention. There is growing
evidence that sexual and physical
violence, and the threat of
violence, significantly impact the
HIV prevention, treatment and
care cascades. Women living with
HIV who anticipate violence
related to the disclosure of their
HIV status are delayed in linking
to the care cascade, and the
experience of intimate partner
violence negatively impacts on
ARV adherence. With regards to
HIV prevention, much like with
PEP, demonstration projects for
HIV Pre-Exposure Prophylaxis
(PrEP) suggest young women,
in particular, who have sex with
men struggle with adherence, and
…HIV prevention
responses and
sexual violence
responses must
be integrated
in order to be
effective…
2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015 3
that their relationships with male
partners strongly influence their
use of PrEP.
The rationale for an integrated
response to HIV and sexual
violence is strong. While global
guidelines do exist to guide
health sector responses, there
is not yet sufficient evidence
to prove the efficacy of these
strategies.1 The sexual violence
research sector can add
significant value to HIV-related
research, and vice versa. There
is an urgent need to conduct
action-oriented research and
build evidence around the
efficacy of interventions and
strategies aimed at preventing
and responding to HIV and
sexual violence jointly. Particular
interventions, including those
incorporating ICT services,
social media campaigns,
infrastructure and transport all
require further interrogation,
and the success of community
mobilisation and empowerment
programmes for women and girls
should be further explored.2
Furthermore, there are
valuable lessons that the HIV
and sexual violence sectors
should share with and draw from
one another. Among the many
questions for consideration,
we should be asking, are
these – How can human rights
monitoring systems that have
worked well in an HIV context
be transferred to the context
of sexual violence? How can
interventions that ensure HIV
testing, treatment and care are
rights-based and empowering
improve the quality of post-rape
services? What role can peer
support play in an integrated
sexual violence and HIV
continuum of care?
An important step toward a
more integrated joint response
to sexual violence and HIV is
to ensure this integration within
the 2015 SVRI Forum itself. The
Forum agenda has relegated
‘HIV and violence’ to a singular
session; this is disappointing,
and arguably wastes a critical
opportunity to act upon the
recurrent calls of previous
Forums to move toward a truly
integrated response to HIV and
sexual violence. It therefore
falls to all Forum participants
to interrogate the research
presented across sessions and
themes and ask: what do these
findings mean in the context of
HIV risks? What questions does
this evidence bring up around
HIV vulnerabilities?
The SVRI Forum must
capitalise on this opportunity
to ensure HIV remains visible
on the global sexual violence
research agenda, so that research
can contribute to an HIV and
sexual violence response that
aims to meet the holistic health
needs and rights of those
affected by HIV and by sexual
violence worldwide.
FOOTNOTES
1. Sinead Delany-Moretlwe,
MBBChPhD DTM & HRHI,
University of the Witwatersrand,
SA AIDS, Durban, June 2015.
2. See Sinead Delany-Moretlwe
presentation.
Emma is with the International
HIV/AIDS Alliance. For more
information: ealdrich@aidsalliance.org.
…be cognisant
of the holistic
health needs
and rights of
individuals…
…not yet
sufficient
evidence to
prove the
efficacy of these
strategies…
4 2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015
Women’s Voices…
Marginalising the evidence…
Presenting research on women who have sex with women
Gemma Oberth1, Felicity Daly2,
Ath’enkosi Sopitshi3,
Phoebe Kisubi Mbasalaki4 & Erin Stern5
The authors of this
article are all women
who are involved in
research projects,
which focus on women
who have sex with
women and HIV. In
this piece, we aim
to contribute to the
discussion Logie has
begun, sharing our
experiences presenting
‘WSW research’ at two
recent HIV conferences
in South Africa, among
other fora.
The experiences are
varied – some negative,
some positive,
some in between –
demonstrating both
progress as well
as persistent
prejudice around this
research topic.
T he bulk of HIV research
on the experiences of
sexually and gender
diverse people centres around
interactions at health facilities
with service providers. A smaller
body examines social and
structural barriers to accessing
care, including engagement
with friends and family, law
enforcement (in many places
where homosexuality is illegal),
and other groups. Further,
the vast majority of all of this
research is focused on gay men
and other men who have sex
with men, and to a lesser extent
transgender people. Women who
have sex with women (WSW)
have been historically excluded
from HIV discourse6.
More recently, there has
been increasing recognition
that women who have sex
with women do face HIV
vulnerability7, and are not a ‘no
risk’ group as was previously
argued.8 Despite this evidence,
research on HIV among women
who have sex with women is
still met with disproportionate and often unfounded
scepticism and rejection.9
Carmen Logie, Assistant Professor in the Factor-Inwentash
Faculty of Social Work at the University of Toronto, has
documented her experiences presenting research on women
who have sex with women and HIV at major international
HIV conferences. Her article, ‘(Where) do queer women
belong? Theorizing intersectional and compulsory heterosexist
in HIV research’ published in Critical Public Health, explores
how her conference audiences called her and her research
into question in ways which reproduced and reinforced
the invisibility and exclusion of women who have sex with
women. Logie describes two specific interactions in which
older white men dismissed her position as either invalid
or irresponsible:
CASE 1:
‘LESBIANS ARE NOT AT RISK FOR HIV’
Logie’s presentation at an international HIV conference
focused on applying a structural violence framework
to theorise the lack of representation of queer women
in HIV research. Following her presentation, an older
white male academic from the audience stood up to
respond and turned his back to her to face the audience.
He argued that Logie’s presentation was not relevant as
‘lesbians are not at risk for HIV’, and if lesbians were to
experience homophobic rape in South Africa they could
simply go to the police.
2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015 5
On the same panel, Kisubi Mbasalaki presented original research
from more than 200 South African women who have sex with
women around sexual identity, behaviour and potential HIV
risk. After both presentations, five questions were asked about
the two presentations, all by men. The questions asked of Kisubi
Mbasalaki were both by black men. Two questions asked of
Oberth and Kisubi Mbasalaki on the same subject stood out:
Also presenting at the SA AIDS conference, Daly shared
her doctoral research on South African policy analysis,
with a focus on women who have sex with women. Her
presentation was entitled ‘Claiming the right to health for
women who have sex with women: Analysing South Africa’s
National Strategic Plans on HIV and STIs’. She felt her panel
At the 9th South African AIDS
Conference (SA AIDS) in Durban
(9-12 June 2015), Oberth presented
a critical literature review on WSW
risk and vulnerability in South
Africa. Stern and Sopitshi are
co-authors on this review. The
critical review focuses on the
layers of vulnerability that women
who have sex with women in
South Africa face, including sexual
violence, transactional sex and
drug use. The main message of
the presentation was that women
who have sex with women are
not at risk of HIV because of their
sexuality per se, but because of
the structural and environmental
context which surrounds
that sexuality, particularly in
South Africa. She opened her
presentation by sharing Logie’s
observations about the manner
in which ‘WSW research’ is often
received at conferences, and
challenged the audience to
interrogate their prejudices during
the presentation as they may arise.
Overall, her experience was a
positive one, with both the Times
and the Beeld newspapers running
stories on the research findings the
next day.
CASE 2:
‘YOU’RE TRYING TO
TAKE HIV MONEY
AWAY FROM GAY
MEN’
Logie’s presentation at an
international HIV conference
discussed qualitative data
that highlighted how
queer women experienced
sexual violence and other
HIV infection risks. Directly
following her presentation,
an older white male
academic expressed concern
that she was trying to ‘take
HIV money away from gay
men’. She clarified that she
was not asking for equal
funding, just inclusion
of queer women in
HIV prevention research.
The audience member
reinforced that funding
was scarce and any money
directed towards lesbians
would detract from fulfilling
gay men’s health needs.
CASE 3:
‘BUT REAL LESBIANS AREN’T AT RISK
FOR HIV’
The content of both questions sought to distinguish
between women who have sex with women who may
also have sex with men (either by choice or through
forced sex) and those who do not. The audience
members felt compelled to reassert rigid understandings
of sexuality, which the presentation explicitly sought
to disrupt. The focus was shifted back towards the
biological risk factors of woman-on-woman sex, rather
than considering the message of the presentations,
which emphasised the importance of socio-structural
and environmental factors. One of the questions on
this topic asked if Kisubi Mbasalaki had documented
any evidence of seroconversion from women who have
sex with women who strictly had sex with only other
women. Both questions undermined the content of
the presentations. As the presenters attempted to shed
light on contextual risk factors, the questions from the
audience disregarded this message and redirected the
conversation back towards biomedicalising risk.
…disproportionate
and often unfounded
scepticism and
rejection…
…in ways which
reproduced and reinforced
the invisibility and
exclusion…
6 2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015
was not an ideal platform for
this paper, dubiously headlined
‘Vectors, Victims, Vulnerability
and Values?’, and featuring just
one other presenter focusing
on sexual minority issues, which
was on men who have sex with
men (MSM). Stern noted similar
challenges with the composition
of panels and panel subjects where
‘WSW research’ was presented at
international conferences. When
‘WSW research’ is presented as part
of predominantly MSM-focused
panels, or on panels which focus on
gender rather than sexuality, ‘WSW
research’ comes across as confused
and out of place from the outset.
Despite the strange panel, Daly
felt that her research was generally
well received at SA AIDS. She felt
affirmed as a white male South
African audience member in his
40s remarked that the organisation
he works with would soon be
piloting ‘WSW-competent’ centres
of excellence, based on successes
of an ‘MSM model’. Although
this comment was welcomed
as positive feedback on Daly’s
presentation, there remains cause
for querying the ability of MSM
organisations to provide ‘competent
WSW services’.
However, Daly has faced significant
push-back presenting her research
in other fora, particularly related
to the quality and quantity of
evidence supporting the notion
that women who have sex with
women are at risk for HIV.
Sopitshi’s experience presenting the same WSW critical
review (as was presented by Oberth at the SA AIDS
conference) at the end of the 3rd Conference of the
Association for the Social Sciences and Humanities in
HIV (ASSHH) in Stellenbosh (06-09 July 2015) was slightly
different; highlighting the importance of space and
composition in shaping the experience of the researcher.
Sopitshi noted that those who attended her presentation
were almost all older white women. There was only one
man in the audience. She also noted the overwhelmingly
white racial composition of the conference in general,
which she felt was problematic considering that many of
the papers presented were focusing on content related
CASE 4:
‘THE EVIDENCE IS NOT (GOOD) ENOUGH’
At a ‘work in progress’ seminar at the Health Economics and HIV AIDS Research Division (HEARD)
at University of KwaZulu-Natal, where Daly was a Research Associate, a senior male academic
questioned her conduct of health policy analysis on WSW in South African HIV policy. He argued
that recent findings of a quantitative study conducted by the Human Sciences Research Council
(HSRC)10 and others did not convincingly demonstrate HIV risks faced by women who have sex
with women. He marshalled no evidence to back this up other than expressing vague doubts
about research methods.
Similarly, Daly also faced this kind of evidence-questioning at the London School of Hygiene
and Tropical Medicine (LSHTM) while scoping and conducting the study for her Doctor of Public
Health degree there. Early on, a senior female academic specialising in sexual health advised that
Daly would not be able to conduct any thesis research on women who have sex with women and
HIV, due to a lack of evidence. Encouragingly, after feeding this exchange back to the university
Director, Daly was relieved that he thought the concept that there was no evidence-base on HIV
among women who have sex with women was nonsense.
Kisubi Mbasalaki also experienced a questioning of the quality of her evidence at SA AIDS, where
a male audience member asked her whether the empirical research findings were ‘really true’ that
forced sex among women who have sex with women to be at 8.1% with a female partner and 1%
with a male partner.
…‘WSW-competent’
centres of excellence,
based on successes of an
‘MSM model’…
2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015 7
who does not necessarily identify as heterosexual, the
space was not one where she felt she could openly talk
about her identity. These contexts, though more subtle and
insidious that the scenarios presented in Cases 1 through 4,
also contribute to a silencing of women who have sex with
women – particularly women who have sex with women of
colour – presenting on this research subject. These topics
surrounding the identity of the researcher were echoed by
Daly in the final case:
Conclusion
The findings of the authors of this article both confirm
Logie’s11 experiences as well as present promising change
in the landscape. Many of the authors did not share Logie’s
experience of compulsory heterosexism in HIV research,
though many were exposed to new and potentially more
subtle forms of exclusion and marginalisation. There
remain intrinsically moral and
political factors which continue
to undermine the reception to
evidence of HIV and STIs among
women who have sex with
women. Issues, such as the
social marginalisation of
women, especially gender
non-conforming women,
and non-heteronormative
female sexuality are embedded in WSW sexual health
studies; as the evidence is marginalised, so too are the
women producing it. Unless we can foster more productive
intellectual spaces to engage on these issues – and some
experiences from the authors of this paper suggest we might
…experience of
compulsory
heterosexism in
HIV research…
to black communities. She also
noted that as a woman of colour,
who does not necessarily identify
as heterosexual, the space was
not one where she felt she could
openly talk about her identity.
These contexts, though more
subtle and insidious that the
scenarios presented in Cases 1
through 4, also contribute to a
silencing of women who have
sex with women – particularly
women who have sex with women
of colour – presenting on this
research subject. These topics
surrounding the identity of the
researcher were echoed by Daly in
the final case:
Sopitshi’s experience presenting
the same WSW critical review
(as was presented by Oberth at
the SA AIDS conference) at the
end of the 3rd Conference of
the Association for the Social
Sciences and Humanities in HIV
(ASSHH) in Stellenbosh (06-09
July 2015) was slightly different;
highlighting the importance of
space and composition in shaping
the experience of the researcher.
Sopitshi noted that those who
attended her presentation were
almost all older white women.
There was only one man in the
audience. She also noted the
overwhelmingly white racial
composition of the conference
in general, which she felt was
problematic considering that
many of the papers presented
were focusing on content related
to black communities. She also
noted that as a woman of colour,
CASE 5:
‘YOU WOULDN’T KNOW. YOU’RE NOT A LESBIAN’
While completing her field work, another female academic from LSHTM, who Daly had
approached to be on her advisory committee, asked her why she was researching lesbians and
HIV. The woman outed herself to Daly, professing that she was ‘from that community’ and that
lesbians are not vulnerable to HIV. This woman’s assumptions about Daly’s identity were both
incorrect and revealing about how ‘WSW research’ is wrapped up in notions of ownership and ‘in
groups’/’out groups’.
…highlighting the
importance of space and
composition in shaping
the experience of the
researcher…
8 2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015
be improving – queer women will
never belong.
FOOTNOTES
1. Visiting Academic at the Center for
Social Science Research, University
of Cape Town, South Africa.
2. Executive Director at Kaleidoscope
Trust, United Kingdom.
3. Project Coordinator at the
Inclusive Healthcare Innovation
Initiative, Bertha Centre for Social
Innovation, Graduate School of
Business, University of Cape Town,
South Africa.
4. PhD Candidate in the Graduate
Gender Programme of Utrecht
University, The Netherlands .
5. Post-doctoral Research Fellow with
the London School of Hygiene and
Tropical Medicine (currently based
on Rwanda).
6. Dworkin, S. L. 2005. ‘Who is
epidemiologically fathomable in
the HIV/AIDS epidemic? Gender,
sexuality, and intersectionality
in public health’. In: Culture,
Health & Sexuality, 7(6), pp615-
623; Logie, C. H. et al. 2012. ‘‘We
don’t exist’’: A qualitative study
of marginalization experienced
by HIV-positive lesbian, bisexual,
queer and transgender women in
Toronto, Canada’. In: Journal of
the International AIDS Society,
15(2).)
7. Sandfort, T. G. et al. 2013. ‘Forced
sexual experiences as risk factor
for self-reported HIV infection
among southern African lesbian
and bisexual women’. In: PloS
One, 8(1), e53552; Matebeni, Z.
et al. 2013. “I thought we are
safe”: Southern African lesbians’
experiences of living with HIV.
In: Culture, Health & Sexuality,
15(sup1), pp34-47; Poteat, T. et al.
(2014). ‘Sexual practices, identities and health among women
who have sex with women in Lesotho: A mixed-methods study’.
In: Culture, Health & Sexuality, 16(2),
pp120-135.
8. Robertson, P. & Schachter, J. 1980. ‘Failure to identify venereal
disease in a lesbian population’. In: Sexually transmitted diseases,
8(2), pp75-76; Dworkin, S. L. 2005. ‘Who is epidemiologically
fathomable in the HIV/AIDS epidemic? Gender, sexuality,
and intersectionality in public health’. In: Culture, Health &
Sexuality, 7(6), pp615-623; Raiteri, R. 1998. ‘Lesbian sex and
risk of HIV transmission’. In: AIDS, 12,
pp450–451.
9. Logie, C. H. 2014. ‘(Where) do queer women belong? Theorizing
intersectional and compulsory heterosexism in HIV research’. In:
Critical Public Health, (ahead-of-print), 1-12.
10. Sandfort, T. G. et al. 2013. ‘Forced sexual experiences as risk
factor for self-reported HIV infection among southern African
lesbian and bisexual women’. In: PloS One, 8(1), e53552.
11. Logie, C. H. 2014. ’(Where) do queer women belong? Theorizing
intersectional and compulsory heterosexism in HIV research’. In:
Critical Public Health, (ahead-of-print), 1-12.
For more information, please contact Gemma Oberth on
gemma.oberth@gmail.com.
…as the evidence
is marginalised,
so too are the women
producing it…
2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015 9
UPCOMING EVENTS
Tuesday, 15 September
09:00-11:00 Plenary: Opening
Auditorium
11:30-13:00 Conflict, post-conflict and emergencies:
Community responses
Auditorium
Sex work: Epidemiology and responses
Helderberg Room
14:30-16:00 Conflict, post-conflict and emergencies: Tools
and methods
Stellenberg Room
Trafficking, transactional sex and sexual exploitation
Historic Old Wine Cellar
16:30-18:00 Special session: Integrating culture into
interventions to prevent gender-based violence
Simonsberg Room
Sexual and gender-based violence in South Africa
Helderberg Room
Wednesday, 16 September
09:00-11:00 Plenary: Interventions
Auditorium
11:30-13:00 Using research to influence policy
Auditorium
HIV and violence
Simonsberg Room
Prevention interventions
Historic Old Wine Cellar
Trafficking, transactional sex and sexual exploitation
Historic Old Wine Cellar
14:30-16:00 Special session: Violence Against Women
and Girls
Simonsberg Room
16:30-18:00 Care and support
Helderberg Room
Addressing violence in people with disabilities
Historic Old Wine Cellar
Extended definitions of gender-based violence
Amphitheatre Board Room 2
Thursday, 17 September
09:00-11:00 Special Session: The What Works to Prevent
Violence against Women and Girls Initiative
Auditorium
Special Session: The challenges and hopes of interventions
around gender equality and intimate partner violence
prevention
Simonsberg Room
Special Session: What is ‘gender-based violence’? And why
does it matter
Historic Old Wine Cellar
11:30-13:00 Economic empowerment interventions for the
prevention of violence against women and children
Auditorium
13:00 Plenary: Closing Session
Auditorium
10 2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015
Thus, the right to health is
intrinsically linked with all other
fundamental human rights and
freedoms, ranging from the right
to life and the right to equality and
non-discrimination to the right to
dignity, autonomy, and to be free
from all forms of violence in both
public and private spheres.
It is widely recognised that the
constitutionally guaranteed right
of access to healthcare2 implies
access to quality healthcare, which
among other entails healthcare
provision free of coercion,
discrimination and abuse. A
central aspect of quality and
patient-centred care is that:
Patients are treated in a caring
and respectful manner by staff
who show appropriate values and
attitudes and respect for patient
privacy and choice.3
Furthermore, the Department of
Health National Core Standards
further state that:
Patients receive the information
they need before they formally
agree to any treatment or
participate in a study.4
THE LEGAL AND POLICY
FRAMEWORK
South Africa’s constitutional, legal
and policy framework protects
fundamental human rights and
freedoms, including the right to
equality and non-discrimination, to
privacy, to autonomy and consent,
and to be free from all forms of
Women’s realities…
They have no right to do that…
Women’s experiences of accessing healthcare1
The enjoyment of the right to health is not just the physical possibility of accessing a medicine or medical service in case
of illness. It includes a wide range of social, legal and structural factors that impact on agency, including the extent to
which people are in the position to safely make informed decisions affecting lives and leading a healthy life.
Johanna Kehler
…an obvious gap between the
policy of ‘rights protections’
and the practice of
‘rights violations’…
2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015 11
violence.6 Moreover, South Africa’s
National Strategic Plan on HIV, STIs
and TB (2012 – 2016)6 reaffirms its
commitment to a human rightsbased
response to HIV, and thus
identifies as one of its principles
that the national response ‘must
be rooted firmly in the protection
and promotion of human and
legal rights, including prioritising
gender equality and gender rights’7.
The National Strategic Plan (NSP)
further recognises that ‘women
are particularly vulnerable to HIV
infection because of biological
vulnerability and gender norms, roles
and practices’8; and aims to address
‘the social, economic, political,
cultural and environmental factors
that lead to increased vulnerability’.
Recognising the potentially adverse
effects of interventions in their
implementation on the extent to
which especially women are in the
position to claim their agency and
exercise their rights – for example in
the context of access to sexual and
reproductive healthcare services
and HIV testing – a pivotal aspect
of effective rights-based responses
to HIV is to ensure that ‘rights are
not violated in the implementation of
interventions’, and to afford access
to justice and redress mechanisms
‘efficiently and effectively’, as and
when rights violations occur.9
However, limited levels of legal
literacy and knowledge about
legislative and policy provisions
addressing HIV-related rights
abuses, especially among women,
as well as inadequate application
and implementation of these
provisions, create a situation
in which rights continue to be
compromised in the context of
service provision; access to justice
and redress mechanisms remain
limited; and, as research revealed,
the decisions by particularly women
living with HIV as to whether or
not and when to access services
are often influenced by the fear of
stigma, violence and other rights
abuses within healthcare.10
Moreover, deeply entrenched
gender and social norms, as well
as prejudices and stigma, limit
women’s capacity to freely make
informed decisions affecting
their lives, including sexual and
reproductive decisions, and
whether or not and when to access
healthcare and treatment.
Subsequently – albeit the enabling
legal and policy environment,
commitments and efforts to ensure
rights protections within healthcare
provisions – women’s experiences
illustrate that accessing healthcare
is more often than not accompanied
by rights violations – ranging from
coercion and lack of privacy to
disrespect, humiliation and denial
of services.
WOMEN’S EXPERIENCES…
Coercion
…it is supposed to my decision
to get tested, not for them to
decide that… 11
Agency, choice, consent and
informed decision making are
human rights principles centrally
embedded in South Africa’s
constitutional, legal and policy
frameworks. Section 12(2) of
the Constitution guarantees
everyone the right to bodily and
psychological integrity; with
specific reference to sexual and
reproductive choices, and informed
consent in the context of health. At
…access to services seem
‘impossible’ without an
HIV test…
…leaving women at a
position of least agency to
make informed decisions…
the same time, the National Health
Act clearly stipulates that ‘no health
service may be provided without a
person’s informed consent’12.
Women’s experiences of accessing
healthcare however illustrate an
obvious gap between the policy
of ‘rights protections’ and the
practice of ‘rights violations’ within
healthcare settings.
A recent documentation and
assessment of rights abuses within
healthcare settings conducted by
the AIDS Legal Network (ALN) and
partners between October 2014
and May 2015 in selected areas
in and around East London and
King Williams Town (Eastern Cape)
revealed that women’s experiences
of accessing healthcare is often
characterised by a lack of agency
and power to make decisions
affecting their health and life.13
…they make us feel like we don’t
have powers…
Especially in the context of sexual
and reproductive healthcare,
women seem to have least agency
to make informed decisions
affecting their lives, as women
often find themselves in a situation
in which access to services seem
‘impossible’ without an HIV test. And
despite law and policy provisions
placing informed consent at the
centre of HIV testing procedures,
women’s experiences seem to
indicate a ‘practice of conditional
HIV testing’; in that without an HIV
test women may not receive the
treatment or care they seek when
going to the healthcare facility.
As a result, women often feel that
‘you have to get tested before you
get helped’; a sentiment often
confirmed by healthcare providers
at the clinic, leaving women at a
position of least agency to make
informed decisions.
…we’re waiting to get helped and
the nurse came and told us to go
to the room to get tested before
we get helped, because we need
to know our status…shouting at
us that we are not using condoms,
but we don’t come to test…I feel
angry, because she has no right to
force us…
…she [the nurse] saying it is
necessary for every patient to test
for HIV…and if I don’t, I won’t
be helped…
…I went for prevention, but the
nurse said I need to test for HIV
before I can get prevention in front
of everyone…if you don’t agree
you will not get the prevention
you came for…
…I went to the clinic, because I
was not feeling well…I was told I
had to test for HIV first in order to
get help…and if I don’t, I won’t get
help…I didn’t feel good about it,
because it was not
my decision…
Women in need of care thus
often feel inclined, pressured and
coerced to ‘consenting’ to an HIV
test in order to get the treatment
they needed, which in most cases
is not associated with HIV testing;
beyond the ‘need to know your
status’ argument.
…I was shocked, but agreed to
test because I needed to
be helped…
…I did test for HIV, because
they insisted…
…adversely impact on
treatment access
and adherence…
…healthcare is often
characterised by a lack of
agency and power
to make decisions…
12 2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015
…I tested, because I knew
if I wouldn’t, I wouldn’t be
helped…I did not feel good
about it, because I wasn’t
ready…
Lack of privacy
…she wasn’t supposed to do that,
she was supposed to help me…
The right to have one’s dignity
respected and protected,
and the right to privacy are
constitutionally guaranteed14;
thus central to South Africa’s
legislative and policy framework.
The National Health Act further
clearly prohibits the disclosure
of any information relating to
a person’s health status and/or
reason for accessing healthcare
without consent.15
…I had to say in front of
everyone that I was there for an
HIV test, even though
that is private and
confidential…
In reality, however, it is as much the
infrastructural set-up of healthcare
settings as healthcare providers’
attitudes towards and treatment
of service users that often lead
to the disclosure of peoples’ HIV
status – without their consent. As
such, accessing healthcare seem to
potentially not only compromise
the right to privacy, but also (as a
result of the heightened risk of right
violations) adversely impact on
treatment access and adherence.
Women’s experiences illustrate the
extent to which women feel a lack of
agency while accessing healthcare
as to whether or not, when and to
whom to disclose their HIV status.
…I worry a lot because people are
going to find out my status…
…I am HIV positive and I go to
the clinic for my treatment…I feel
so uncomfortable, because they
isolate us from other people and I
am not ready to come out to
other people…
…I take treatment for HIV…
when I go to the clinic I have to tell
everything to the security guard
before they let me in…even when
I go inside, I have to explain to
everyone that I am here for the
HIV treatment…and when I finally
do get seen, I have to go to the
special HIV room…
Healthcare providers’ attitudes
are one of the recognised barriers
to access to healthcare services.16
Being scolded and ridiculed while
accessing HIV and pregnancy
prevention methods arguably do
not only constitute a violation of
one’s fundamental human right
to dignity and respect, but also
…lack of trust in both the
rights protections embedded
in access to healthcare and
redress mechanisms…
2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015 13
potentially lead to a situation of not
not accessing these services again,
due to fear of further abuse; thus,
among others, leading to a situation
in which women may knowingly
place themselves at greater risk of
HIV and unintended pregnancy.
…they got attitudes…I
considered skipping treatment
because of this…they are rude…
they must treat us like patients,
not streetwalkers…
…I went to the clinic to get
contraceptives for the first time…
I’m 17 years old and the nurses
shouted at me in front of e
veryone saying I am too young
to have sex…but they should
be happy that at least I am
preventing pregnancy…
…it makes me feel like I don’t
want to go back to that clinic…I’m
pregnant now, but I’m scared to
go back…many people are scared
to go to that clinic…
…the nurses don’t respect us…
they scream for everyone to hear
what medication we take or why
we’re there…
Moving on and seeking redress
…they have no right to do that…
Notwithstanding the need for
enhancing levels of legal literacy,
many women are arguably (contrary
to common assumptions) aware of
their rights to agency, consent and
privacy. Irrespective of whether or
not women express these rights
explicitly, women’s narratives of
accessing healthcare facilities show
that they feel ill-treated, coerced and
abused. As such, women’s decisions
as to whether or not to seek redress
are as much determined by a lack of
knowledge as to where and how to
report incidences of rights abuses
within healthcare settings (‘I did
not know where to complain’) as by
a sentiment that there is ‘no use to
complain’, and/or ‘no use in reporting’.
…if the nurse can speak to us like
that in front of her colleagues…
there is no use in reporting…
…if we report to the clinic, we see
no change and we do not see any
follow-ups…so, I see no need to
report it…
At the same time, women feel cautious
and scared to lay a complaint, as
they fear the consequences of such
actions for their next visit to the
healthcare facility.
…I got scared of reporting
thinking if I do I do it will be a
serious matter and I will end up
not getting any help next time…
…you will be treated even worse if
you complain…
Women’s experiences also
highlight a certain level of
lack of trust in both the rights
protections embedded in
access to healthcare and redress
14 2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015
mechanisms available as and
when their rights are violated.
…we can’t change the situation,
because we live with it…and it will
be a waste of my time to complain
about it…
…we don’t have any other
options…
…there is nothing I can do, I need
my treatment…
CONCLUSION
Women’s experiences clearly
indicate that enabling legal and
policy frameworks by themselves
do not translate into social
environments facilitating the
realisation of rights; as many
women, irrespective of rights
protections in law and policy,
experience access to healthcare as
yet another aspect of their lives in
which their agency is undermined
and their rights are threatened. As
such, the persistent gap between
policy and practice seems to be
not only a central part of women’s
realities while accessing healthcare
(in that women continue to have
limited agency), but also perpetuate
to an extent women’s greater risks
to rights violations (in that the
gendered context of society to an
extent justifies the very same).
Without intensified efforts to create
enabling social environments
(through transforming the societal
context in which rights are realised
and services are accessed), women
will continue to be least in the
position to claim agency and
realise rights – irrespective of both
the rights protections afforded to
‘everyone’ in law and policy and
women’s levels of legal literacy.
As long as women feel ‘there is
nothing I can do, I need my treatment’,
the enabling legal environment will
continue to have little to no impact
on women’s realities; thus nullifying
the progress made. Thus, it seems to
be time to both prioritise and ‘fast
track’ women’s needs in accessing
healthcare, as well as ensure that
women’s experiences of accessing
healthcare are not only ‘heard’
and ‘responded to’, but instead
become the ‘evidence’ informing
efforts to enhance access to
quality healthcare.
FOOTNOTES:
1. This article is an excerpt from the
broader documentation project
focussing on women’s experiences of
accessing healthcare in the Eastern Cape
and Limpopo.
2. Constitution of the Republic of South
Africa, Act 108 of 19, Section 27.
3. National Department of Health. 2011.
Fast Track to Quality: The six most
critical areas for patient-centred care.
p6.
4. Ibid.
5. Section 9, 12 and 14 of the
Constitution.
6. National Strategic Plan on HIV, STIs
and TB, 2012 – 2016 [www.doh.gov.za/
docs/stratdocs/2012/NSPfull.pdf]
7. Ibid, p25.
8. Ibid, p35.
9. National Strategic Plan on HIV, STIs
and TB, 2012 – 2016, p54.
10. Kehler, J. et al. 2012. Gender Violence
and HIV: Perceptions and experiences of
violence and other rights abuses against
women living with HIV in the Eastern
Cape, KwaZulu Natal and Western Cape,
South Africa. AIDS Legal Network.
11. Quotes, unless otherwise specified,
are from women participating in the
documentation study.
12. National Health Act, No 61 of 2003,
Section 7(1).
13. During this period, a total of 530
incidences were documented.
14. Section 10 and 14 of the Constitution.
15. Section 14(1) and (2) of the National
Health Act.
16. National Department of Health. 2011.
Fast Track to Quality: The six most
critical areas for patient-centred care;
UNAIDS. 2013. Getting to Zero: HIV in
eastern and southern Africa, pp70-71.
Johanna is with the AIDS Legal Network
(ALN). For more information:
jkehler@icon.co.za.
…legal and policy frameworks
by themselves do not translate
into social environments…
2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015 15
Innovations and intersections…
The International HIV/AIDS Alliance
(the Alliance) considers the 2015 SVRI
Forum a critical global advocacy space
which offers an important opportunity for
advocacy and engagement around the
links between HIV and sexual and gender
violence. In order to significantly impact
the dual epidemics of HIV and sexual
violence, the relationship between HIV,
violence and coercion must be brought
back into focus of both research and
human rights discourse.
T hrough partnering with the SVRI Forum, the
Alliance hopes to raise awareness and interest
around the links between HIV, genderbased
violence and intimate partner violence within
the Forum agenda and programme, and amongst
important stakeholders at a global level and within
the Southern African region. The Alliance’s
relationship with the SVRI Forum allows for
cross-sectoral engagement with the growing
evidence around rights-based, effective and
transformative responses to HIV and violence
against marginalised, criminalised and excluded
groups of people. It is within this context that the
Alliance hopes to participate in exploratory debates
with donors, partners, and community members and
to share its vision for accelerating the elimination
of violence based on and in the context of HIV,
especially violence against women, and criminalised
and marginalised populations.
At the SVRI Forum the Alliance champions a truly
integrated research agenda and health system
response to HIV and sexual and gender violence.
As Alliance Linking Organisations bring ongoing
research and best practice lessons on violence to this
global research space, the Alliance raises its voice to
join others advocating for the protection of women
and men in all their diversity from sexual and gender
violence. Through enhancing the awareness of all
those present at the SVRI Forum of the complex
realities, and multiple and intersecting risks and needs
of diverse people in the context
of preventing HIV and sexual and
gender violence, the International
HIV/AIDS Alliance delivers on its
commitment to ongoing, long
term engagement on HIV and
sexual and gender violence and
galvanises Forum attendees and
partners to push innovative HIV, sexual and gender
violence work forward, to deliver maximum impact.
For further information contact Claire Mathonsi on
cmathonsi@aidsalliance.org.
Claire Mathonsi
…the relationship
between HIV,
violence and
coercion must be
brought back
into focus…
2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015
16
Despite the concerted
efforts of the
multi-faceted global
HIV response, proverbial
key populations continue
to be disproportionately
affected by HIV. It is
commonly accepted
by global stakeholders
that targeted
approaches toward
the most marginalised
and hardest to reach
populations, who are
routinely, systematically
stigmatised and
discriminated against,
are critical if we are to
reach the end goal of a
world without AIDS.
T his targeted,
hyper-focused
approach to
programming is largely
supported by evidence; in
Swaziland, 2 in 3 female sex
workers are living with HIV1;
in Kenya, HIV incidence
among men who have sex with
men is as high as 35%2; and it
is estimated that up to half of
the 25,000 people who inject
drugs in Tanzania are living
with HIV3.
However, the justification
to programme for key
populations extends beyond
the epidemiology of the
epidemic, and the social
and legal contexts in which
key populations experience
human rights violations.
The categorisation of key
populations provides a useful
demarcation and lens for
analysis; the concept provides
opportunities for
multi-country human
rights-based programming
based on the shared identities
and realities of people across
national borders, as well as a
wealth of lessons learned across
diverse regional contexts.
Unintended consequences…
What are the unintended consequences of
programming for key populations? Who defines
the key in key populations, and who are we
leaving behind? These questions become especially
pertinent when it comes to understanding risks and
vulnerabilities of women in all their diversity to
gender violence.
Special report:
Looking beyond what we think we know…
‘Key populations’, women and gender violence
Emma Aldrich
2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015 17
18 2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015
…Evidence shows that
violence in its various forms
greatly impact on the extent
to which women are in the
position to claim and exercise
their rights, and to access
and benefit from available
HIV prevention, testing,
treatment, care and support
services. Violence, including
the fear of violence, also
has an effect on women’s
decisions as to whether or not
and when to access services,
as well as whether or not and
to whom to disclose an
HIV positive diagnosis.4
When programmes hone in
on key populations of women
(including female sex workers,
women who inject drugs,
lesbian women and other
women who have sex with
women, transgender women,
and women living with HIV),
it is necessary to be mindful
that the intended programme
beneficiaries are women, who
may or may not occupy several
key population identities.
As HIV programmes and
interventions seek to reach the
most underserved, vulnerable
and marginalised groups, who
are routinely subject to stigma,
discrimination and violence, it
is imperative that we remember
that individuals can identify
and be identified with multiple
identities, and can therefore
experience multiple risks and
vulnerabilities to violence.
In the patriarchal societies
in which HIV interventions
operate, women largely
have less access to critical
resources and less autonomy
over the decisions that shape
their lives. Layer on top of
this context the threat, and
lived reality, of violence that
women experience on a daily
basis, due to their
gender expression or
identity, and on top
of that, the threat of
stigma, violence and
discrimination that
women, who do not
conform to societal
norms face (inclusive
of women within key
populations), we are
making a big ask of
the women in all their
diversity whom we aim
to reach and connect to
prevention, treatment
and care. The ask is to self-identify with a highly
stigmatised (key population) group, and to make
themselves known to providers of an intervention
(who may or may not be a source of further
stigmatisation and discrimination).
Within the South Africa context, for instance, if an
intervention refers a female sex worker, for example, to
sexual and reproductive health services, she may have
to make herself and her profession known to
HIV testing providers. In a context where sex work
is illegal, this is highly problematic and can expose
women to a number of safety and security risks. And
then, there is the protection of women’s human rights
to consider. For example, there is increasing evidence
that healthcare providers in South Africa frequently
coerce women seeking sexual and reproductive
health services into HIV testing. Also, when HIV
testing is conducted on certain days of the week, as
…routinely,
systematically
stigmatised and
discriminated
against…
…social and legal
contexts in which key
populations experience
human rights
violations…
is common practice amongst
government-funded health
centres, confidentiality around
HIV testing is harder to ensure.
If this woman receives a positive
HIV diagnosis, and leaves the
health centre or testing site visibly
upset, how confidential really are
the results of her test? And how
safe is she from violence (related
to her multiple identities and
vulnerabilities), as neighbours
and community members notice
her leaving the health centre and
make assumptions about why she
was there in the first place and
why she seems upset?
Questions to consider…
This scenario, and others like
it, raises pertinent questions
for all of us who are active
in the global response to key
populations and HIV. In the
context of disabling social
and legal environments, by
programming for specific
stigmatised populations, is
it possible we inadvertently
place individuals at greater
risk of violence? Are we
programming holistically
for the whole person, or
creating key population
siloes? Do our programmes
challenge gender inequalities
or reinforce structures of
oppression; leaving systemic
violence unchallenged? Are
our programmes potential
risks of further violence; the
very same we are trying to
respond to? Are we looking for
holistic solutions to collective,
community problems, or
zeroing in on siloed groups
of people?
Programming (especially
HIV testing and treatment) for
key populations, from a rights
point of view, must take into
consideration issues of gender
inequality, gendered coercion
and gender violence in order
to both prioritise and ensure
consent, confidentiality, safety
and agency. How then should
we programme for women
in all their diversity, whose
identities are multiple and
intersecting, and whose risks
and vulnerabilities are many?
From a gender violence perspective; perhaps it is time
to start thinking outside the key population box.
In the words of AIDS Legal Network Executive
Director Johanna Kehler:
…my identities are not the problem. My identities are
your problem…so start programming to transform
communities.5
FOOTNOTES:
1. See www.avert.org/hiv-aids-swaziland.htm.
2. See www.avert.org/hiv-aids-kenya.htm.
3. See www.avert.org/hiv-aids-tanzania.htm.
4. AIDS Legal Network. 2012. ‘If I knew what would happen I
would have kept it to myself’: Gender Violence and HIV. Report
Summary. Cape Town, South Africa.
5. Presentation, International HIV/AIDS Alliance, June 2015.
Emma is with the International HIV/AIDS Alliance. For more
information: ealdrich@aidsalliance.org.
…prioritise and
ensure consent,
confidentiality,
safety and
agency…
2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015 19
…is it possible we
inadvertently place
individuals at greater
risk of violence…
20 2015 SVRI Forum • Stellenbosch • 15 – 17 September 2015
Editor: Johanna Kehler jkehler@icon.co.za
Photography: Johanna Kehler jkehler@icon.co.za
Design: Melissa Smith melissas1@telkomsa.net
Printing: FA Print
Supported by Oxfam
www.aln.org.za www.athenanetwork.org
In my opinion…
A shifting narrative…
Transgender women and HIV
political commitment towards
social justice and change for
transgender women.
My biggest hope for the future
is scientific advances in HIV
prevention. I am also hopeful
about the shifting narrative
for myself and my community
around acceptance, love and
sisterhood with women in all
their diversity. I sincerely hope
that the next development
framework will stray from
heterosexual and gender
-normative language and
practice and will encapsulate
the issues of all women.
Leigh Ann is with S.H.E. Feminist
Collective of Transgender and
Intersex Women in Africa.
For more information:
transfeminists@gmail.com.
Transgender communities
are often most
marginalised in the
response to HIV. Needless
to say, this has exacerbated
HIV and the risk of genderbased
violence. There are a
number of unique factors
that shape HIV vulnerability
for transgender women,
such as the likelihood of
performing sex work, family
rejection, lack of access to
gender-affirming care, and
criminalisation of
gender-diverse identities.
Ihave born witness to the
death of so many transgender
women, and I continue
this fight not only for
HIV programming for
transgender women, but also
for the equitable resources to
create an enabling environment
for myself and other
transgender women.
The biggest lesson for me as
a transgender woman and
activist over the past 15 years is
that inappropriate, or exclusion
from, HIV and
gender-affirming care
further fuels the epidemic
among transgender women.
One particular example to
mention is that the inclusion
of transgender women in
programmes for men who
have sex with men was not
useful (or even appropriate)
for transgender women. If
anything, it really misplaced the
health needs of transgender
women. One big lesson to take
from this is that transgender
women, like any other key
population, should be at the
centre of the response. Further
to that, the criminalisation
of diverse gender identities
and sex work continues to
hamper HIV programming for
transgender people. I have
learnt that there needs to be
radical policy change and
…transgender
women, like
any other key
population,
should be at
the centre of
the response…
…there needs
to be radical
policy change
and political
commitment…
Leigh Ann van der Merwe