Project Description

Continuing the critical discourse on women’s rights and HIV, this edition of the ALQ/Mujeres Adelante examines some of the persistent challenges and barriers women face in claiming their right (and agency) to ‘taking control’ over their risks and vulnerabilities to HIV and violence.

The various articles in this edition explore the extent to which progress has been in the response to women’s realities, risks and needs based on and in the context of HIV; and highlights some of the pervasive ‘obstacles’ to women’s access to and realisation of rights. Some of the issues discussed include the risks associated with women’s HIV positive status disclosure in South Africa and its implications for the adequacy of the response to women, violence and HIV; the criminalisation of HIV non-disclosure and its failure to ‘protect women’ in the Canadian context; the impact of violent language and narrow agendas on the realities of, and responses to, violence against women; the effectiveness of the AIDS response to ‘key affected women’ in Southern Africa and Indian ocean states; and the need for meaningful investment in women living with HIV. this edition also includes an opinion piece on categories of ‘normality, respectability and value’ and the role of the ‘movement’ in addressing violence against women, and violence based on sexual orientation and gender identity.

June 2013
Special edition
incorporating
MujereS adelante ALQ
A Publication of the AIDS Legal Network
Mujeres Adelante A newsletter on women’s rights and HIV
Johanna Kehler
With growing evidence on
the effects of HIV-related
violence on women’s lives,
the need to address the
various links between gender
violence and HIV has been the
centre of both discourse and
commitment for a long time.
Yet, women’s realities and risks
in the context of HIV remain
largely unchanged, as women
continue to be most at risk of HIV exposure and
transmission, as well as violence and abuse based
on and in the context of HIV.
Recent findings from
a new study conducted
in 2012 by the
AIDS Legal Network (ALN)
and partners in three provinces
confirmed that women are at high
risk of violence and abuse as and
when their HIV positive diagnosis
becomes known – irrespective
of their HIV disclosure being
voluntary or involuntary. Nearly
2500 women and their communities from New Brighton
(Eastern Cape), Illovo (KwaZulu Natal), and Tafelsig
If I knew what would happen I would have
kept it to myself…
Women’s experiences of HIV status disclosure and its implications1
Mujeres Adelante 2 EDITORI AL
Special edition incorporating MujereS adelante – June 2013 ALQ
Continuing the critical discourse on women’s rights
and HIV, this edition of the ALQ/Mujeres Adelante
examines some of the persistent challenges and
barriers women face in claiming their right (and agency)
to ‘taking control’ over their risks and vulnerabilities to HIV
and violence.
The various articles in this edition explore the extent to which progress
has been in the response to women’s realities, risks and needs based
on and in the context of HIV; and highlights some of the pervasive
‘obstacles’ to women’s access to and realisation of rights. Some of
the issues discussed include the risks associated with women’s
HIV positive status disclosure in South Africa and its implications
for the adequacy of the response to women, violence and HIV; the
criminalisation of HIV non-disclosure and its failure to ‘protect women’
in the Canadian context; the impact of violent language and narrow
agendas on the realities of, and responses to, violence against women;
the effectiveness of the AIDS response to ‘key affected women’ in
Southern Africa and Indian Ocean states; and the need for meaningful
investment in women living with HIV. This edition also includes an
opinion piece on categories of ‘normality, respectability and value’ and
the role of the ‘movement’ in addressing violence against women, and
violence based on sexual orientation and gender identity.
Gender violence as both a cause and consequence of HIV is well
recognised. Based on latest research findings evidencing the
multiple risks associated with women’s HIV positive status disclosure,
Johanna Kehler raises questions not only as to the effectiveness of
the AIDS response in protecting women’s human rights, but also as
to the ‘collective responsibility’ for the occurrence, perpetuation and
Editorial…
Continued on page 4
1. If I knew what would happen I would
have kept it to myself… Page 1
Women’s experiences of HIV status
disclosure and its implications
Johanna Kehler
2. Editorial Page 2
3. No power, no protection… Page 14
The cautionary tale of the Supreme Court
of Canada criminal cases involving
HIV non-disclosure in the context of
sexual encounters and its failure to
protect women
Louise Binder
4. Violent language and narrow
agendas… Page 22
The problem with ‘corrective rape’
Dipika Nath
5. Silenced and forgotten… Page 31
HIV and AIDS agenda setting paper for
women living with HIV, sex workers and
lesbian, gay, bisexual, transgendered
individuals in Southern Africa and Indian
Ocean states
OSISA
6. Collateral damage… Page 45
On normativity, respectability, and value
Lynn Darwich
7. MIWA… Page 48
Meaningful investment in women living
with HIV and AIDS
Luisa Orza
8. Campaign messages… Page 56
In this issue
Mujeres Adelante 3
and Beacon Valley in Mitchell’s Plain (Western Cape)
participated in the research.
Undoubtedly, women’s experiences of HIV disclosure
give evidence to the multiple forms and the continuum of
abuse and violence
in all aspects of their
lives, perpetrated by
partners, families,
friends, communities
and service providers
alike. Violence and other rights abuses, as experienced by
women living with HIV, ranged from interpersonal to structural
to institutional, with women recalling incidences of being
beaten, rejected, chased away from their homes, humiliated by
healthcare workers for missing their clinic appointments, as
well as ridiculed and further victimised when seeking redress.
…although, I was ready to disclose my status, the
community was not ready to accept me…2
Reflecting on their experiences of violence and abuse
upon HIV disclosure, including the effects of the continued
violations on their health and overall well-being, some women
underscored the need to be ‘careful’ to whom and when to
disclose one’s HIV positive status, while others questioned
the rightfulness of HIV disclosure given the associated risks
or chose to not disclose their HIV status anymore after they
moved to a different area.
…it is risky…you need to think carefully about disclosing
and that’s why I keep mine a secret…3
Access to healthcare
The experiences
of women living
with HIV gave an
account of the ill
treatment, abuse
and rights violations
endured at clinics
and hospitals, including healthcare providers’ discriminatory
attitudes and remarks. As such, women’s accounts illustrates
that accessing healthcare is but one of the elements in the
continuum of abuse and rights violations against women living
with HIV.
Women recalled numerous incidences of being shouted at
and humiliated by healthcare staff for missing their appointment,
without ascertaining the reasons as to why women did not
come to the clinic – ‘she didn’t wait for an explanation, she
was just rude’4. However, even when women explained why
ALQ June 2013 – Special edition incorporating MujereS adelante
Women’s experiences of HIV status disclosure and its implications
…women underscored the
need to be ‘careful’
to whom and when
to disclose one’s
HIV positive status…
…women’s realities and
risks in the context
of HIV remain
largely unchanged…
Mujeres Adelante 4 EDITORI AL
Special edition incorporating MujereS adelante – June 2013 ALQ
pervasiveness of abuse and violations
of women living with HI V. Highlighting
women’s experiences of HIV disclosure
as a continuum of violence by a
continuum of perpetrators, and
communities’ lack of preparedness
to ‘accept’ women living with HIV ‘as
part of the community’, she argues
that we need to ‘shift’ from ‘promoting
HIV disclosure’ to ‘promoting safe
environments for HIV disclosure’ – so
that women can make informed and
free decisions as to whether or not,
when and to whom to disclose their
HI V positive status, without fear of
stigma, discrimination and other forms
of violence.
The adverse effects of laws
criminalising HI V non-disclosure, as
well as HIV exposure and transmission,
especially on women, has been a key
element of the human rights and HIV
discourse for a long time. It is within
this context that Louise Binder looks
at the ‘cautionary tale’ of the Supreme
Court of Canada regarding criminal
cases involving HI V non-disclosure in
the context of non-disclosure and its
failure to protect women. Introducing
Canadian case law, she discusses
the role and impact of the law on
HI V-related stigma and discrimination
against women, and argues that
applying criminal law to prosecute
HIV non-disclosure is not only ‘bad
public health policy’ and ‘defying the
logic of evidence-based science’, but also
‘bad news for women’.
The problem with the concept and
understanding of ‘corrective rape’ in the
South African context is the focus of
the article by Dipika Nath. Exploring
the impact of ‘violent language and
narrow agendas’ on the occurrence
and perpetuation of violence against
women, as well as sexual violence
against lesbians (and failure to ‘respond
to’ these occurrences), she argues that
the language of ‘corrective rape’ not only
creates untenable (and unsustainable)
hierarchies of various ‘kinds of violence’
and their effects on survivors and victims of
sexual violence and rape, and hierarchies
between ‘lesbian’ and ‘heterosexual woman’
experiences of sexual violence and rape
– but also prevents a clear understanding
of the extent and foundation of
‘gendered violence’.
Despite the growing commitment
at a global and regional level, ‘key
affected women’ in Southern Africa
and Indian Ocean states continue
to lack recognition, representation,
participation and engagement in the
AID S response, thus manifesting their
risks and vulnerabilities to HI V and
subsequent rights abuses. Based on
this premise, the contribution by the
Open Society Initiative for Southern
Africa (OSISA) introduces an HI V and
AID S agenda setting paper for women
living with HI V, sex workers and
lesbian, gay, bisexual and transgender
people. The article highlights some of
the persistent challenges and barriers
for ‘key affected women’ to access HIV
and sexual and reproductive health
services and rights, and argues that
‘appropriate’ responses to ‘key affected
women’ and HIV are to be based on a
wide range of ‘quality evidence’, and
‘mutual and meaningful partnerships’.
Exploring some of the ‘successes’ and
‘setbacks’ of social justice movements
in addressing gender violence (and
violence based on sexual orientation
and gender identity), Lynn Darwich
Mujeres Adelante 5
ALQ June 2013 – Special edition incorporating MujereS adelante
they did not honour their appointment, healthcare providers’
attitudes often led to women being sent away without access to
healthcare or treatment.
…I missed my appointment to collect my ARVs, because
I had to go to work that day…when I went to the clinic
three days later to get a new appointment,
the nurse shouted at me to leave and come
back when I don’t have a job to go to…5
Women’s experiences of accessing healthcare
also highlight the extent to which especially
healthcare providers’ attitudes and prejudices
against women living with HIV not only limit
women’s access to quality healthcare free of
fear, stigma and discrimination, but also deter
women from accessing healthcare.
…you might be scared to go back to the
clinic, because you are scared of what
will happen to you…sometimes you end
up defaulting…6
The lack of assured confidentiality
within healthcare provision, and risks
of involuntary disclosure of women’s
HIV status, based on the infrastructural set-up of the clinics, as
well as the separation of services – as ‘that’s how most people
find out that you are HIV positive, when they see you at the
clinic’7 – similarly deter women from accessing healthcare
and treatment.
…by sitting there everyone knows that
I am HIV positive…so, let me not go sit
there…if they can mix us, then maybe
also the death rate of people living with
HIV and AIDS will be decreased…8
Women’s accounts point, among others, to
the apparent inherent rights violations within
service provision, due to the infrastructure of
Women’s experiences of HIV status disclosure and its implications
…dire need to
re-evaluate not only
the infrastructural
set-up of HIV-related
services, but also by
whom and the
manner in which
these services
are provided…
6 Mujeres Adelante Special edition incorporating MujereS adelante – June 2013 ALQ
EDITORI AL
raises the question as to the ‘complicity’
of ‘our movements’. She discusses
concepts of ‘normativity, respectability
and value’, the role of ‘our movements’
in perpetuating and replicating
‘violence’, and reasons that due to the
failure to connect ‘racialised, gendered
and sexualised devaluations of human
life’, social justice movements have,
more often than not, not only ‘failed to
challenge systems of oppressions’, but
also, to an extent, perpetuated and
replicated ‘violence’.
Although the concepts of ‘nothing
about us without us’, and the
meaningful involvement of women
living with HI V (MIWA ) in all aspects
of the AID S response have long
been recognised, it seems that their
translation into practice remains to be
a ‘significant challenge’. Revisiting some
of the ‘spaces’ for women, and the
involvement of women living with HIV,
Luisa Orza, underscores the continuing
lack of political spaces for meaningful
participation and involvement of
women living with HI V, and argues
that women’s meaningful engagement
and leadership can only be realised
by moving beyond ‘securing a place at
the table’ for women living with HIV to
the ‘serious and committed investment
of resources’ – thus, the meaningful
investment in women living with HIV.
The common ‘thread’ in all articles
seems to be that violence has been, still
is, and will continue to be intrinsically
linked to especially women’s
HIV realities, risks and needs – despite
an ever-growing knowledge and
evidence base, with an equally evergrowing
commitment to recognise and
address both the causes and effects of
violence against women based on and
in the context of HIV. At the same time,
the common ‘threat’ portrayed appears
to be both the pervasiveness of societal
contexts, ‘nurturing’, ‘perpetuating’ and
‘condoning’ the violation of women
and women’s rights (and ‘refusing’
women’s agency), and the failure of the
AID S response to effectively respond
to women and HI V, whilst ensuring
the promotion, protection and
advancement of women’s rights based
on and in the context of HIV.
Indeed given these recurring
‘threats’, it seems high time to ‘move’
beyond merely recognising women’s
realities, risks and needs to actually
transforming the societal contexts
defining the very same – through
re-evaluating our ‘concepts’ of and
‘narrow approaches’ to women, violence
and HIV, and to truly ‘move’ from the
theory of ‘meaningful involvement’
of women in all aspects of the
AID S response to a practice of
‘meaningful investment’ in women,
so as to ensure that women are not
only ‘capacitated’ and ‘resourced’
to meaningfully participate with,
and engage in, processes affecting
their lives, but also that women and
women rights are at the centre of
the AIDS response in ‘commitment’,
‘policy’, and ‘practice’. As failing
to do so will continue the status
quo of women’s disproportionate
risks and vulnerabilities to
HI V exposure, transmission and related
rights abuses…
Johanna Kehler
Mujeres Adelante 7
ALQ June 2013 – Special edition incorporating MujereS adelante
Women’s experiences of HIV status disclosure and its implications
healthcare centres, as well as healthcare workers’ attitudes and
prejudices against women living with HIV, arguably underscore
the dire need to re-evaluate not only the infrastructural set-up
of HIV-related services, but also by whom and the manner
in which these services are provided. Moreover, as women
experience access
to healthcare as
an element in the
continuum of violence
perpetrated against
them, it seems pivotal
to not only restructure
service provision,
but also to ensure that programmes and interventions, meant
to ‘benefit’ women living with HIV, are indeed based on and
informed by their experiences of the multiple causes, forms
and effects of HIV-related violence and other rights abuses in
their lives.
Seeking redress and access to justice
The research shows that women are well aware of their
right to take legal actions against any person(s) for unlawful
disclosure of their HIV status, and other forms of abuse, due
to their HIV status. Yet, many women choose not to seek legal
redress; instead they sought support from family and friends
or advice from social workers and counsellors, for fear of
further abuse, humiliation and HIV status disclosure, as well as
reluctance to lay charges against family members.
…I was scared that he will beat me again…I was also
scared that people will know about my HIV status…9
Women who sought legal redress generally spoke about
their disappointment ranging from lack of support received to
inadequate investigations and insufficient sentences, as well
as the risks of further HIV status disclosure and violations
while pursuing legal actions. Similar to healthcare provision,
women’s experiences of accessing police and court services are
…laden with humiliation
and further abuse…
…inherent rights violations
within service provision…
Mujeres Adelante 8 Women’s experiences of HIV status disclosure and its implications
Special edition incorporating MujereS adelante – June 2013 ALQ
laden with humiliation and further abuse, as
well as the risks of involuntary disclosure of
their HIV status – the very same violations
women seek justice for – as ‘there is no
privacy at the police station’10.
…we were told not to open a case…
because she should just accept her
HIV status…11
Although mechanisms are in place to seek redress and
access justice, women’s experiences clearly highlight lack of
access to the available structures and mechanisms; hence,
leading to a lack of access to justice for
women who have been violated and
abused based on and in the context of
HIV. Recognising the impact of taking
legal actions on women, combined with
the limited to no redress received, some
women felt strongly that it might be better
not to lay a charge, since ‘at the end of the
day, you do more harm to yourself’12.
…the community will keep on talking. What can you do?
On the other hand you will just be stressed further. So
you’re going to report one person today, another one
tomorrow and somebody else the next day. At the end of
the month, how many people are you going to report?…13
In order for redress mechanisms to become truly available
and indeed a source of redress and justice, women called for
training of police and court personnel, and stricter sentences, as
and when cases do go to court.
…I think police must be more informed about the charges
to be laid and how to deal with people like us when they
come to the police station…if one or two cases are being
made and the police takes on those cases, then, I believe,
that more will fall out of the closets to lay charges…14
…an indicator of the
‘value’ of women and
their safety subsequent
to HIV acquisition…
Mujeres Adelante 9
ALQ June 2013 – Special edition incorporating MujereS adelante
Women’s visions for positive change
Based on their experiences of rejection, violence and abuse
upon HIV status disclosure women also clearly articulated
what they thought needs to be done to ensure the autonomy
and safety of women living with HIV. Equal treatment and
respect, especially within healthcare provision; the protection
of women’s rights in all aspects of their lives; access to quality
and comprehensive services free of stigma, coercion and
violence; and education for communities and service providers
alike on HIV and women’s rights, are but some of women’s
calls for change.
…I must not be seen as a woman who is
HIV positive, but as a woman who is a human being…15
Highlighting the pervasiveness of abuse and other rights
violations within healthcare settings, as
well as its impact on access to healthcare,
women emphasised the dire need to not
only train healthcare providers to ensure a
professional attitude and access to quality
services, but also to assure confidentiality
within healthcare provision through,
among others, integrated services.
…I think if government can mix
the patients so
that we cannot
differ from other
patients, because
we are not
di f ferent…we
must not have special rooms, special nurses and special
administration…16
Women also articulated the need for safe places for women
living with HIV who experienced violence and abuse, as well
as the need to come together as women living with HIV and to
collectively claim their spaces within communities.
…we are tired of people looking down on us and
discriminating against us…we are part of the community,
you should accept us…17
Questions to be raised …
Recognising the various risks associated
with women’s HIV disclosure, the data
seems to raise the question as to the
potential role that societal expectations
of, and pressures on, women to disclose
their HIV status play in the continuum
…the potential role
of programmes and
initiatives promoting
HIV disclosure in the
perpetuation of violence
against women living
with HIV…
Women’s experiences of HIV status disclosure and its implications
…becomes to be
‘unethical’; hence, a form
of violence in and
of itself…
10Women’s experiences of HIV status disclosure and its implications
Special edition incorporating MujereS adelante – June 2013 ALQ
of abuse and violence women experience in all aspects of
their lives, irrespective of whether or not women themselves
decided the time of and the manner in which their HIV status
became known.
The research shows that although communities are aware
of the risks associated with women’s HIV status disclosure,
communities nonetheless feel strongly that women need to
disclose their HIV positive status.17 While this could be seen as
an ‘indicator of success’ in the efforts to promote HIV disclosure
and its potential benefits, communities’
expectations of and pressure on women to
disclose their HIV status, despite the multiple
risks, could also be seen as an indicator of the
‘value’ of women and their safety subsequent
to HIV acquisition. Considering the apparent
disconnect between beliefs that women’s
HIV disclosure is essential and the awareness
and knowledge of the risks for women who
do disclose their HIV status, it appears then
that for communities, women’s HIV disclosure takes priority
over women’s safety – as communities’ ‘need to know’ women’s
HIV status seems to override the knowledge of women’s risks
of violence and abuse associated with their HIV positive status
becoming known.
In light of women’s experiences there also seems to be the
need to further interrogate the potential role of programmes
and initiatives promoting HIV disclosure in the perpetuation of
violence against women living with HIV. Notwithstanding the
potential benefits of HIV status disclosure, an argument could
however be made that calling for HIV disclosure in a societal
context which fosters not only HIV-related stigma, violence and
other rights abuses, but also violence against women, comes to
be ‘unethical’; hence, a form of violence in and of itself. In an
environment in which claiming the right to
autonomy and privacy are perceived as key
to women’s safety, the focus of attention
should arguably not be on advocating
for HIV status disclosure, but instead on
transforming the ‘unsafe’ societal context,
so as to create an ‘enabling’ and ‘supportive’
environment for women to make informed
and free decisions as to whether or not,
when, and to whom to disclose their
HIV positive diagnosis – without fear of discrimination,
violence, coercion and other rights abuses.
Recognising the multiple risks of violence, abuse and other
rights violations upon women’s HIV status disclosure – whilst
simultaneously promoting HIV status disclosure – arguably
Mujeres Adelante …‘collective responsibility’
for the occurrence,
perpetuation and
pervasiveness of abuse
and violations against
women living with HIV…
Mujeres Adelante
also underscores, to an extent, the ‘collective responsibility’ for
the occurrence, perpetuation and pervasiveness of abuse and
violations against women living with HIV. Moreover, within
the gendered and normative context of society, advocating
HIV status disclosure, with the knowledge of the risks
associated with such disclosure, seems to further ‘condone’
and ‘justify’ HIV-related stigma, violence and other rights
abuses against women. And finally, it also
seems to imply that women’s experiences of
HIV disclosure are not as ‘valuable’ as the
potential benefits of HIV status disclosure,
since the perceived ‘collective’ need for women
to disclose their HIV positive status supersedes
as much women’s realities as women’s rights
to autonomy and privacy.
It is within the same context of women’s
rights to autonomy and non-violence that the
findings seem to raise questions as to the
extent to which societal expectations of
women’s ‘responsibility’ to care for and
protect others limit, if not deny, women the
right to freely decide whether or not, when
and to whom to disclose their HIV status.
Although communities are knowledgeable
about the right to choose, they nevertheless believe that women
are to be held accountable, including through legal actions,
for not disclosing their HIV status as and when their partners
subsequently acquire HIV.19 Such beliefs not only perpetuate
the ‘misguided’ assumption that HIV prevention is largely a
responsibility for women living with HIV, but also manifest, and
to an extent justify, the subsequent blame of and abuse against
women living with HIV. Furthermore, it
seems to highlight that women’s rights are
only as realisable, as they are ‘acceptable’
to communities’ perceptions of the ‘roles
and responsibilities’ of women living with
HIV – as women claiming their rights to
autonomy and privacy, seem to (in most
11
ALQ June 2013 – Special edition incorporating MujereS adelante
Women’s experiences of HIV status disclosure and its implications
…women’s experiences of
HIV disclosure are not as
‘valuable’ as the
potential benefits of
HIV status disclosure…
Mujeres Adelante 12Women’s experiences of HIV status disclosure and its implications
Special edition incorporating MujereS adelante – June 2013 ALQ
instances) linearly lead to violence and other
rights abuses.
Given both women’s experiences of
violence and abuse upon HIV disclosure
and communities’ perceptions that women
claiming their right not to disclose their
HIV positive diagnosis should be ‘punished’
and held accountable, arguably afford
rather limited (if at all any) possibilities
for women living with HIV to be free
from stigma, violence, coercion and abuse – irrespective of
whether or not they disclose their
HIV positive diagnosis.
In the context of women’s
experiences of accessing healthcare,
the study also seems to highlight
a need to re-visit the concept of
providing ‘integrated services’ (as
in providing ‘one-stop-centres’),
so as to ensure that women’s
‘visions’ of integrated services (as
in ‘no specialised services’) have
the potential of being realised. Although acknowledging the
resource implications of ‘restructuring’ healthcare provision,
failing to do so will arguably not only
perpetuate the abuse and rights violations
against women living with HIV, but also
maintain service provision which is not
based nor informed by women’s realities
and needs.
Call for ca ution…
Although women’s experiences of
HIV status disclosure as a continuum
of violence and abuse perpetrated by a continuum of people
could potentially be interpreted as a ‘call for non-disclosure’,
it could arguably also be seen as a ‘call for caution’ to halt and
…rights are only as
realisable, as they
are ‘acceptable’
to communities’
perceptions of the ‘roles
and responsibilities’ of
women living with HIV…
Mujeres Adelante 13
ALQ June 2013 – Special edition incorporating MujereS adelante
Women’s experiences of HIV status disclosure and its implications
evaluate the impact
of programmes and
initiatives promoting
HIV disclosure on
women. Similarly,
these findings
should be seen as
much as an indicator
of the many
(and presumably)
‘unintended’ adverse consequences of HIV disclosure, as of the
lack of communities’ preparedness to ‘accept’ women living
with HIV ‘as part of the community’.
Since, as evidenced by women’s experiences, the current
societal context is neither conducive nor supportive nor
safe for women living with HIV – irrespective of women’s
HIV status disclosure being voluntary or involuntary – it
seems however crucial to shift the focus from the ‘benefits’ of
HIV disclosure to the ‘benefits’ of HIV disclosure in safe and
supporting environments, which are truly ‘enabling’ and thus,
affording women the (constitutionally guaranteed) autonomy
and freedom to decide whether or not, when and to whom to
disclose their HIV positive diagnosis without fear of violence
and other rights abuses.
And finally, women’s accounts of the multiple risks
associated with HIV disclosure should arguably be a ‘call for
caution’ to place women’s realities, risks and needs at the centre
of the response to women, violence and HIV, as otherwise
violence and other rights abuses against women living with
HIV will prevail – whilst women continue to conclude that ‘if I
knew what would happen, I would have kept it to myself’20.
FOOTNOTES:
1. This article is based on the findings from the research report. See
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. [www.aln.org.za/downloads/
Gender%20Violence%20&%20HIV2.pdf]
2. Woman in Illovo, KwaZulu Natal, 29 August 2012.
3. Woman in Beacon Valley, Western Cape, 29 September 2012.
4. Woman in Beacon Valley, Western Cape, 18 August 2012.
5. Woman in New Brighton, Eastern Cape, 25 August 2012.
6. Woman in Illovo, KwaZulu Natal, 29 August 2012.
7. Woman in New Brighton, Eastern Cape, 23 August 2012.
8. Woman in New Brighton, Eastern Cape, 25 August 2012.
9. Woman in Illovo, KwaZulu Natal, 28 August 2012.
10. Woman in New Brighton, Eastern Cape, 29 August 2012.
11. Woman in New Brighton, Eastern Cape, 22 August 2012.
12. Woman in Beacon Valley, Western Cape, 16 August 2012.
13. Woman in New Brighton, Eastern Cape, 24 August 2012.
14. Woman in Tafelsig, Western Cape, 31 August 2012.
15. Woman in Illovo, KwaZulu Natal, 27 August 2012.
16. Woman in New Brighton, Eastern Cape, 24 August 2012.
17. Woman in New Brighton, Eastern Cape, 23 August 2012.
18. Of all participants, 78% believe that women need to disclose their
HIV positive status.
19. Of all participants, 69% thought that women are to be held
responsible.
20. Woman in Beacon Valley, Western Cape, 16 August 2012.
…a ‘call for caution’ to
place women’s realities,
risks and needs at the
centre of the response to
women, violence
and HIV…
Johanna Kehler is the Director of the AIDS Legal Network
(ALN). For more information and/or comments,
please contact her on jkaln@mweb.co.za.
Mujeres Adelante 14No power, no protection…
Special edition incorporating MujereS adelante – June 2013 ALQ
Louise Binder
This has led to
a culture of
fear, shame,
self-loathing and secrecy in
these groups and in turn has
kept them away from the
traditional healthcare and
public health environments,
which have been as guilty as
other members of society at
perpetrating this disgraceful,
immoral conduct.
Growing knowledge base
At the outset of the epidemic, the argument for isolating
people with HIV was that we did not know its genesis and
how it was transmitted, but
that argument quickly rang
hollow since those in the
gay and lesbian communities
who came forward to help
did not acquire HIV from
their contact with us. It
became even more untenable
once we knew how HIV was
transmitted and it was clear
that the general population
was not at risk of acquiring
this disease, unless they
had unprotected sex with a
person living with HIV; shared unclean needles with a person
with HIV; received blood containing HIV; or acquired it as a
baby in the breast milk of a mother living with HIV.
No power, no protection…
The cautionary tale of the Supreme Court of Canada involving criminal cases of
HIV non-disclosure in the context of sexual encounters and its failure to protect women
Since the beginning of the HIV epidemic, HIV has been synonymous with stigma and discrimination directed
at people living with HIV, and those populations overrepresented in the epidemic.
Mujeres Adelante 15
ALQ June 2013 – Special edition incorporating MujereS adelante
We also learned that HIV transmission did not occur
every time there was contact in one of these ways. In fact,
the transmissibility rate of HIV from a man living with HIV
to a woman without HIV is on average only 1 in every 1250
sexual encounters or 0.08%, while the transmissibility rate
from a woman living with HIV is even lower at an average
of 1 in every 2500 sexual encounters
or 0.04%.1 The use of a condom further
reduces this already low transmissibility
rate by 80%. The fear of sexual encounters,
not to mention social and work interactions
with people living with HIV, should surely
have lessened considerably, if not totally
disappeared, at this point of increased
knowledge, and yet it continued.
Stigma and discrimination should
further have receded once highly active
antiretroviral therapy became available.
It had the impact of protecting our immune systems from
decimation, regenerating our damaged immune systems
to some extent, and reducing the amount of virus in our
blood and secondary compartments to very low levels,
often undetectable by blood tests. This was not a cure, but it
definitely meant an improved quality of life and longevity – a
miracle after the devastation reeked by the virus on relatively
young, vibrant people prior to its advent.
Researchers discovered that the transmissibility rate
during a sexual encounter with a person living with HIV who
has a low or undetectable viral load in the blood (less than
40 copies per millilitre of blood) was between 0.0% and 0.14
per 100 person years.2 At last, we thought,
the stigma and discrimination against
people living with HIV would be at an end,
and their right to lead the same kinds of
lives as others in society would finally be
recognised. How wrong we were!
The role of the law
All evidence to the contrary, society,
in the guises of the law enforcement
and judicial systems, has done just the
opposite. It has raised the spectre of people
living with HIV as heartless criminals, intent on hiding their
HIV status from sexual partners and infecting them, or at
least putting them at significant risk of infection knowingly
and intentionally at every turn. How did we come to this
shocking and untenable conclusion after we have come so far
in knowledge about transmissibility and about treatments?
No power, no protection…
…HIV has been
synonymous with stigma
and discrimination
directed at people
living with HIV, and
those populations
overrepresented
in the epidemic…
Mujeres Adelante 16No power, no protection…
Special edition incorporating MujereS adelante – June 2013 ALQ
The impact of this
misconception on
endeavours to turn the
tide of this epidemic,
particularly in the
most marginalised and
vulnerable populations
in the epidemic, will
be perverse.
So what is the role of the criminal law in perpetuating this
folly? Early in the epidemic in Canada, we relied on public
health laws, policies and officials to manage the prevention
issues that arose, including situations where a person knew
his or her HIV status, but did not disclose it to a sexual
partner. Due primarily to a serious misstep by public health in
managing a case of serial HIV transmission by a person living
with HIV, people began to rely on the criminal law for redress,
when a sexual partner living with HIV did not disclose his or
her HIV status in situations of unprotected sexual encounters.
Today, Canada has the dubious distinction of having
charged and prosecuted more people living with HIV than any
other country – over 140 such prosecutions – 11% of these
are women living with HIV. Since Canada does not have a
specific criminal law related to HIV, charges are laid under
sections of the Criminal Code, including assault, sexual
assault, aggravated sexual assault, attempted murder and
murder. Decisions by judges in various provinces in Canada
led to a range of interpretations of these laws in the context of
the facts put before the court.
Finally two cases reached the highest court, the Supreme
Court of Canada, setting rules for lower courts and law
enforcement to follow. The first, R v Cuerrier (1998)
2 S.C.R. 371, was an allegation of aggravated sexual assault.
Mr. Cuerrier, a man living with HIV, had vaginal sex with
several women who did not have HIV. None of them acquired
HIV. The defence in
law to this charge is
consent. The Court
interpreted the law of
consent to be vitiated
where the consent is
obtained by fraud and
found that failure to
inform a sexual partner
that one is living with
HIV prior to the sexual
encounter is fraud. This
fraud put the partner
…stigma and
discrimination should
further have receded
once highly active
antiretroviral therapy
became available…
…the impact of this
misconception on
endeavours to turn the
tide of this epidemic,
particularly in the
most marginalised and
vulnerable populations
in the epidemic,
will be perverse…
Mujeres Adelante 17
ALQ June 2013 – Special edition incorporating MujereS adelante
who is HIV negative at significant risk of infection, which was
an attempted sexual assault. The Court mused that vaginal sex
with a condom might not create this significant risk.
Unfortunately, hopes that this would be the law
were dashed by the R v Mabior, R v DC decisions (2012)
S.C.R. 47. The charges in those cases were aggravated sexual
assault. The Court confirmed the interpretation of the law in
Cuerrier. It went on to determine that a person living with
HIV had a responsibility to disclose his or her HIV status to
a sexual partner
prior to vaginal
intercourse, unless
he or she both used
a condom and had
a low (undefined)
viral load.
This was
the worst of all
possible outcomes,
except perhaps
saying that people living with HIV could not have sexual
intercourse at all. People working in the HIV, LGBT, women
against violence, sexual and reproductive health and rights,
human rights, women’s rights and related communities were
appalled. For me, the fact that the Court had women on it
was doubly upsetting. The rarefied air of the Supreme Court
chambers appears to have had an unfortunate influence on
them, i.e. forgetting real world realities for many women.
The decision reflected a lack of understanding of the science
of transmission and the public health impact it would have
on prevention. It also lacked any understanding of the
lived experience of the populations overrepresented in the
epidemic, including women.
No power, no protection…
… return to the use
of public health as
a mediating device
to avoid criminal law
interventions…
Mujeres Adelante 18No power, no protection…
Special edition incorporating MujereS adelante – June 2013 ALQ
The impac t of the law
This decision has an adverse impact on many populations
living with HIV. I submit, however, that the impact on
women, particularly women in those populations already
vulnerable and marginalised, will be compounded and will
have a profound impact, not only on prevention but also on
the criminalisation of women. The main reason for this is the
concurrent epidemic of violence against women taking place
globally. When one brings together the intersection of these
two epidemics plus the societal discrimination against women,
you leave women out in the cold on the issue of disclosure.
If a woman is in a violent relationship, whether physical,
sexual, emotional, verbal or psychological, from which
she cannot practically extricate herself for any number of
reasons, her fear of harm will surely override her concern for
the criminal law and she will not disclose that she is living
with HIV. If her violent partner does know her HIV status,
she will certainly
be in no position to
negotiate condom use
or refuse sex, because
she does not have an
undetectable viral
load. The same will
be true of a woman
who is dependent
on her partner
socio-economically
for her own needs
and those of her
dependents, an all too
common scenario. She
will not disclose her
status if it threatens
the protection she requires from him. He will determine how,
when, and where they have sex, not her.
For these reasons she may also not be taking medications
even if she fits the guidelines for treatment for HIV or has
poor health.
The whole issue of demanding a low viral load in addition
to condom use is also problematic. Highly active antiretroviral
treatments, while generally quite effective in reducing viral
load, are, after all, effectively chemotherapy for life. They
have been discovered to cause serious diseases, including
heart disease, liver and kidney damage, bone problems,
certain cancers, as well as aging people with HIV up to ten
years more than their chronological age. In addition they may
cause daily side effects that reduce quality of life, including
…forgetting real
world realities for
many women…
…her fear of harm
will surely override
her concern for
the criminal law and
she will not disclose that
she is living with HIV…
Mujeres Adelante 19
ALQ June 2013 – Special edition incorporating MujereS adelante
No power, no protection…
nausea, diarrhoea, lipodystrophy and depression. Few would
want to start these before it is absolutely necessary.
Even if one is prepared to start treatments, they are
not necessarily available in all jurisdictions or may only
be available if you pay for them. This may also be true
of condoms.
Women may well also feel a false sense of security from
this decision, believing that a man with whom they are having
unprotected sex must not be living with
HIV or he would disclose as required by
the criminal law. Yet, there is no evidence
that supports the belief that men are
impacted by these legal decisions to behave
in accordance with them.
Those who are sensitive to the court
decisions are not necessarily moved to
act as they direct, but rather to find ways
to evade them. There is talk in some
populations about ‘no test, no arrest’,
meaning that people who may consider themselves at risk of
acquiring HIV and would otherwise have tested will not do so
to avoid the impact of the court decisions. This is a recipe for
increased acquisition of HIV among women and flies in the
face of prevention strategies.
Simply put, these court decisions are bad law, bad public
health policy, defying the logic of evidence-based science.
They are definitely bad news for women.
Why is it that among all of the diseases that can be
acquired by infection, HIV is the only one that has been
deemed to create criminal consequences until recently? This
is true even where no actual harm, i.e. transmission of HIV,
has occurred. It is just another form of stigma and resultant
discrimination dressed up in black robes
for credibility.
My view of why stigma and
discrimination exist against people living
with HIV in North America, which is not
the politically correct reason people have
given in the past, or are trying to use to
advance the criminalisation argument, is
found in the epidemiology of this disease.
In North America this epidemic was first
discovered in the gay population, generally
in large cities. While people may deny it, discrimination
against this group in society still exists and in some places
is virulent. Rhetoric at the time, and even more recently,
about gays bringing this plague on themselves, because of
their sinful conduct, and related homophobic comments
…those who
are sensitive to
the court decisions
are not necessarily
moved to act
as they direct,
but rather to find ways
to evade them…
Mujeres Adelante 20No power, no protection…
Special edition incorporating MujereS adelante – June 2013 ALQ
make the point. Since then, this epidemic has expanded
its grasp into other populations generally found on the
margins of the power base in society, people who use drugs,
prisoners, the homeless, young people, women, immigrants,
African-Americans, Hispanics, Aboriginal people and
transgendered people, among others. These people are seen
as disposable and unimportant no matter their number or their
involvement in keeping the wheels of society in motion. In
my opinion, and that of other far more erudite people, this is
the crux of AIDS-phobia. We do not like the populations who
acquire it; we do not consider them powerful or important; we
do not frame our views of our society from a universal human
rights lens. No power, no protection.
What to do ne xt?
What can we do in the face of bad law? Avoid its use
except where it is truly appropriate to the situation and work
to change it?
In order to ensure that it is only used where the facts
clearly demonstrate a clear intent to do harm to others
without any regard for them, we must begin by educating
those entering the legal and law enforcement fields
about HIV, including the real risk of HIV acquisition,
gender-based violence and socio-economic realities. We must get
on school curricula.
We must also get on the curricula of medical school and
schools educating healthcare providers in the same way. If
they educate their patients or help them with their real world
issues, we may keep people from being in harm’s way of the
criminal law.
We must reach law enforcement officers, prosecutors,
defence lawyers and judges as well. My legal colleagues working
in this field have strongly advocated for prosecutorial guidelines
that will ensure that the criminal law is correctly used.
Mujeres Adelante 21
ALQ June 2013 – Special edition incorporating MujereS adelante
No power, no protection…
I would also like to see a return to the
use of public health as a mediating device
to avoid criminal law interventions. This
requires appropriate resources and education
for this group.
I feel strongly that issues that impact
particular groups overrepresented in
this epidemic, and the epidemic of
gender-based violence, must be emphasised
in all fora and forms of education.
Needing help, not punishment
Recently I presented on this topic to a feminist legal
studies conference at my alma mater Queen’s Law School.
I will end by telling you the story I told them. I was infected
nearly 25 years ago by my late husband who was diagnosed
while we were married. He did not tell me. After we divorced
I was tested and found out my status. It was before the age of
effective antiviral therapy so I was sent home with two years
to live. I was homicidally angry. Fortunately I did not act on
those feelings. Over time, with the help of a therapist, I came
to realise that my husband was not a pathological liar and
murderer, but a tragic figure with demons of his own. On his
death bed I forgave him everything. I meant it.
I know that had I relied on the criminal
law and sent this sick man to jail to die
alone in some prison infirmary with no
care and probably no pain medication I
would be carrying around more guilt and
stress than I could bear. Besides I need my
emotional and physical energy to take care
of my own health every day. Time heals
– it is a cliché because it is true. It also
provides perspective. Putting him in jail
would not have changed my situation, but would have made it
worse. He needed help, not punishment.
FOOTNOTES:
1. See www.catie.ca/en/pif/summer-2012.
2. See www.aidsmeds.com/articles/heterosexual_
transmission_1667_23387.shtml.
…just another form of
stigma and resultant
discrimination dressed
up in black robes
for credibility…
Louise Binder is a lawyer, a co-founder of the
Canadian Treatment Action Council, and a
Steering Committee member of the International
Community of Women living with HIV. For more
information and/or comments, please contact her
on louise.binder@sympatico.ca.
Mujeres Adelante 22The problem with ‘
corrective rape’
Special edition incorporating MujereS adelante – June 2013 ALQ
Dipika Nath
When people in other parts of the
world hear about lesbians in
South Africa through the media,
almost the only thing they are likely
to learn is that butch, black, soccerplaying
lesbians in townships are
raped, and sometimes killed, by black
men who wish to ‘correct’ them; and that black
lesbians may become pregnant and/or contract
HIV as a result of sexual violence.
In much of the coverage of the rape, torture, and murder
of black lesbians in the only country on the continent
whose constitution and laws offer lesbians and gay
men protection from discrimination, there is little critical
engagement with the fact that this violence takes place in a
context of widespread state-sponsored and -condoned violence
against various sections of society.1 Students, labourers,
workers, sex workers, the unemployed, the landless, single
women, people living with HIV, migrants, people with
disabilities, and, of course and disproportionately, all women,
girls, and feminised people in and beyond these groups, are
at the receiving end of state indifference on the one hand,
and its corruption, inefficiency, and violent crackdown on the
marginalised on the other, that together erode people’s capacity
for self-determination, their claim to bodily integrity, and their
access to decent food, housing, healthcare, and livelihoods.
Violent language and narrow agendas…
The problem with ‘corrective rape’
Mujeres Adelante 23
ALQ June 2013 – Special edition incorporating MujereS adelante
The problem with ‘corrective rape’
The South African context
Almost two decades into the new South Africa, the poor
are poorer than they were in 1994, when the African National
Congress (ANC) took over the reins of government.2 In a
society with as high levels of inequality and all forms of
crime and violence in South Africa3, social
prejudice is almost inevitably expressed
in violent terms. The bodies of the socially
and economically disempowered are
permanently available for abuse – through
the exploitation of workers4 in the country’s
extractive industries5, commercial farms6,
as volunteer caregivers7, or as domestic
workers8; through poor education9 and high
levels of unemployment10; unchecked sexual
and physical violence, including murder11;
infrastructural barriers to mobility12;
through the absence or inadequacy of basic public services13;
and through the marginalisation of certain bodies even within
already disenfranchised communities, such as those of black,
unemployed, HIV-positive women, who are almost completely
excluded from the economic sphere, and of female and
transgender sex workers.14
The privatisation of lucrative sectors of the economy (as
well as of basic services)15; the continued lack of redress for
the land grabs of the last three centuries that deprived millions
of native and indigenous people of their ancestral land, as
well as of sustainable sources of livelihood16; the historical
and ongoing extraction of the country’s natural resources by
multinational corporations; the political
economy of aid, whose conditionalities
represent the modern face of old
colonialism in the name of development17;
and a dysfunctional education system that is
unable to even deliver textbooks to certain
parts of the country and whose failure at
such a fundamental task goes unexamined
by the country’s elected leaders ensure
that new generations of an uneducated
and disenfranchised black workforce will
continue to be available for exploitation in
the country’s businesses, whose profits serve to further increase
the distance between poor and rich.
Violence against women
Unsurprisingly, violence against women, as both symptom
and malaise, occurs with alarming impunity and amidst a
deafening social and political silence on its scope, prevalence,
…little critical
engagement with the
fact that this violence
takes place in a
context of widespread
state-sponsored
and -condoned violence
against various sections
of society…
Mujeres Adelante 24The problem with ‘
corrective rape’
Special edition incorporating MujereS adelante – June 2013 ALQ
and consequences.18 Female bodies are considered permanently
available and easily disposable objects, and male and state
entitlement over them remains a constant through all layers of
social and private life. The militarised police force fails to both
prevent crime and apprehend wrongdoers. As a manifestation of
gender and sexual oppression, violence against lesbians has to
be placed at the confluence of an anti-poor state, a fragmented
socius, and codes of misogynist and predatory masculinity
modelled by influential leaders and woven into the social fabric
in the name of culture.19
A lesbian who flouts gendered codes of social and sexual
behaviour disrupts the naturalised sexual order and social
hierarchy, signalling her independence from male control, by
simultaneously denying cisgender,20 heterosexual men sexual
access to her body and appearing to replace
the male figure in the heterosexual dyad.
The rejection of normative gender roles in
combination with a seeming usurpation of
masculine social and sexual power is often
the expressed reason for why men attack,
intimidate, rape, torture, and kill lesbians.
Activists in the field of lesbian, gay,
bisexual, and transgender (LGBT) rights
have worked hard to capture the homophobic
nature of violence
against lesbians in
order to visibilise
lesbian experiences
within a generally
heteronormative
society. They have
re-worked language to assist in this effort and undertaken
research, outreach, training, and consciousness building
within and beyond lesbian, gay, bisexual, and transgender
communities.21
However, due to the increasing ascendance of identity
politics and the dominant discourse of human rights
(progressing hand in hand with globalisation and free-market
capitalism), the desire to visibilise the nature
of this violence has resulted in the isolation
of (sexual) violence faced by lesbians (and
other members of lesbian, gay, bisexual, and
transgender communities) from other forms
of gendered violence. The human rights
paradigm – focusing on participatory rather
than socio-economic and distributive aspects
of democracy and on legal remedies for
socio-economic problems – requires every
…with alarming impunity
and amidst a deafening
social and political
silence on its scope,
prevalence,
and consequences…
…to visibilise
lesbian experiences
within a generally
heteronormative society…
Mujeres Adelante 25
ALQ June 2013 – Special edition incorporating MujereS adelante
The problem with ‘corrective rape’
problem to be articulated as a rights claim; such a legalistic view of
self-determination and agency necessarily trades in the
discourse of victimisation and entitlement, a discourse that is
unable to address structural causes of inequality and violence
and which effectively disables alliance building and the
formulation of multi-issue politics.22
In addition to the restriction of ‘social
justice’ to ‘individualised human rights’
(which is only one way of thinking about
social justice), the heteronormative
approach of the South African state to
gendered violence has augmented this silostyle
thinking.23 As a result, lesbians have
been excluded from much of the discussion
on women’s rights, locally as well as
internationally.24 In turn, and in order to
carve out space for issues specific to sexual orientation and
gender identity, the lesbian, gay, bisexual, and transgender sector
has, with only a few exceptions, also failed to co-articulate sexual
orientation and broad concerns of gendered violence.
Sexual violence against lesbians
It is against this backdrop that the proliferation of a term
such as ‘corrective rape’ must be understood, as a term that
(currently) obscures more than it (historically) illuminated. By
assigning a unique value to some forms of violence experienced
by some members of a presumably bounded community, the
term creates various smokescreens and untenable hierarchies –
among kinds of violence and their effects, among survivors and
victims of violence, and among perpetrators.
First, it suggests that sexual violence
faced by individuals presumed or known to
be lesbian is worse than all other instances
of sexual violence. One of the ways in
which this presumed difference is articulated
is in the sometimes explicit, often implicit,
claim that the harm done to a raped lesbian
is greater than the harm that follows the
rape of a presumably heterosexual woman,
particularly a sexually active one. Apart
from reinforcing misogynist ideas about the unrapeability of
sexually active heterosexual women, leave alone the issue of
marital or relationship rape, such a claim also reinforces the
myth that only strangers perpetrate real or ‘serious’ rape. Such
deductions are already found among police personnel and in
the pronunciations of the judiciary. For example, in a 2005 case
in which then High Court Judge Mogoeng Mogoeng, appointed
by the president as the Chief Justice of the Constitutional
…such a legalistic
view of self-determination
and agency
necessarily trades in the
discourse of victimisation
and entitlement…
Mujeres Adelante 26The problem with ‘
corrective rape’
Special edition incorporating MujereS adelante – June 2013 ALQ
socio-politically constructed identity and
becomes a biologically determined set of
sexual and gender characteristics.
Second, the term’s exclusive focus
on sexual violence deprioritises and
invisibilises other forms of violence
faced by individuals presumed or known
to be lesbian; all forms of verbal abuse,
threat, intimidation, harassment, physical attack, and
sexual violation that do not involve vaginal penetration are
relegated to a lower status. The narrow focus on a normative
understanding of rape, and its elevation above all other
forms of violence, is also partly explained by the fact that
mainstream human rights discourse – which is only now,
and unevenly, recognising human rights
abuses perpetrated by non-state actors –
often fails to consider as rights violations
much of the violence faced by women
and members of lesbian, gay, bisexual,
and transgender communities. Because the
discourse of human rights is also notorious
for calling for an end to (some forms of)
violations without acknowledging the
political, economic, and social contexts
Court in 2011, reduced a convicted rapist’s
sentence on the grounds that the rapist
was the rape survivor’s boyfriend, and
that the rape was, therefore, less ‘serious’
than ‘the rape of one stranger by another
between whom consensual intercourse was
almost unthinkable’.25
The resulting hierarchy between
‘lesbian’ and ‘heterosexual woman’ results in a stereotyping of
both categories, which, in turn, yields fictional ideas of what
a ‘real lesbian’ is – a stereotype that is used to police sexual
desires, practices, and gender expression, including within
lesbian communities. Thus, relatively feminine appearing
lesbians, bisexual women, lesbian parents, and lesbians who
may currently have or in the past have
had sexual relationships with cisgender
men may be treated with suspicion
and disbelief when they say they have
been raped; concomitantly, gender nonconforming
lesbians and transgender men
may be considered to have suffered greater
harm through sexual violence. Through
such normativising strategies, ‘lesbian’
ceases to be a temporally specific and
…acknowledging
the political, economic,
and social contexts
that create the
enabling conditions for
the violations…
…‘lesbian’ ceases to be
a temporally specific and
socio-politically
constructed identity
and becomes a
biologically determined
set of sexual and
gender characteristics…
Mujeres Adelante 27
ALQ June 2013 – Special edition incorporating MujereS adelante
that create the enabling conditions for the violations,26 a
narrow focus on rape also fits neatly into the mainstream
human rights framework.
Unsustainable hierarc hies
The isolation of one kind of experience of violence through
the language of ‘corrective rape’ not only yields sensationalist
and de-contextualised reportage, it also prevents a clear
understanding of the extent and foundation of the problem
of gendered violence. A closer inspection of the voluminous
research on sexual violence in South Africa would immediately
disrupt the exceptionalising discourse surrounding sexual
violence directed at lesbians. It is by now well established that
men rape women who reject their sexual advances, regardless
of sexual orientation, age, or other characteristics. Study after
study establishes the fact that in addition to being ‘fun’, rape
is the preferred mode of punishment of, or revenge against,
women who turn down male suitors, and are perceived to be
‘high-class’, or display ‘inappropriate femininity’.27
For example, popular forms of gang rape, such as the
historical phenomenon of jackrolling, in which gangs abducted
girls and women who were considered ‘snobbish’, and the
current one of streamlining, in which a woman is tricked or
coerced into having sex with two or more men (a situation
sometimes organised by the woman’s boyfriend), are not
considered to be rape by the men, who justify their actions
by claiming that they wanted to teach the woman a lesson.28
Moreover, arguments about tradition, used by attackers to
justify their attacks on lesbians, are also used to justify rapes
of other women, as well as other misogynist practices, such as
‘virginity testing’, which is considered by its practitioners to
be essential for maintaining cultural authenticity. Furthermore,
restricting the concept of ‘female masculinity’ or encroachments
on male entitlements to only lesbians ignores the fact that
even presumably heterosexual and gender conforming women
The problem with ‘corrective rape’
Mujeres Adelante 28The problem with ‘
corrective rape’
Special edition incorporating MujereS adelante – June 2013 ALQ
we judge the harm done or intended on the basis of whether the
perpetrator had known or guessed the two women’s different
sexual orientations? Would we argue for different sentences
if the rapist had known, or guessed, their different sexual
orientations and had used a homophobic slur when raping the
lesbian and a misogynist slur when raping her
heterosexual friend?
In exceptionalising the reasons for and
consequences of sexual violence against
lesbians, the term ‘corrective rape’ implicitly
reduces sexual non-submissiveness to only
an effect of non-normative sexual orientation.
A person who is not identified as a lesbian
is thus deprived, however unintentionally, of her capacity to
be sexually non-submissive. To the extent that the dominant
discourse of lesbian, gay, bisexual, and transgender rights (and
other individual rights discourses) exceptionalises lesbian, gay,
and transgender experiences (they do not for the most part pay
any attention to the concerns of bisexual people), this discourse
misses the opportunity for creating common cause with other
struggles and instead creates hierarchies of victimisation among
various marginalised groups.
The result of such a critique cannot be a re-closeting
of violence against lesbians and other challenges faced
are seen to transgress gender roles when they assert their
physical or sexual independence or earn more money than their
male partners.
Finally, the discourse of ‘corrective rape’ (and the allied
discourse of ‘hate crimes’) also creates categories of perpetrators
– ‘ordinary’ rapists and ‘correctional
rapists’, who rape only lesbians – when
there is nothing to suggest that rapists
in South Africa select specialised victim
profiles. There is no reason to believe that
the person who rapes a lesbian has not in
the past, or will not in the future, also rape
other women and female-born people. In
fact, research establishes the high number of rapists in South
Africa who rape more than once,29 and lesbian survivors are
raped by people who are not aware of their sexual orientation.30
In creating a hierarchy among survivors and victims, this
discourse, by extension, creates a hierarchy among rapists and
among an individual rapist’s different acts of rape. To take
these hierarchies to their hypothetical conclusion, consider a
situation in which a person rapes a lesbian and her heterosexual
friend on the same occasion, inflicting the same degree of injury
on both. Would we argue that the rapist should be awarded a
higher sentence for the former rape than for the latter? Would
…prevents a clear
understanding of the
extent and foundation
of the problem of
gendered violence…
Mujeres Adelante 29
ALQ June 2013 – Special edition incorporating MujereS adelante
The problem with ‘corrective rape’
unequal of the G20 countries. See ‘Left Behind by the G20’. 157
Oxfam Briefing Paper, January 2012. [www.oxfam.org/en/policy/leftbehind-
by-g20]
3. See the latest government statistics at www.saps.gov.za/statistics/
reports/crimestats/2012/downloads/crime_statistics_presentation.pdf.
4. For the minimum wage in various sectors, see www.mywage.co.za/
main/salary/minimum-wages.
5. See www.bbc.co.uk/news/world-africa-13275704; www.iol.co.za/
business/companies/lonmin-an-example-of-exploitation-1.1365221#.
UStI8qU29SV.
6. See a Human Rights Watch report at www.hrw.org/reports/2011/08/23/
ripe-abuse.
7. See http://mg.co.za/article/2009-08-11-cry-for-help-caregivers;
Daniels, K., Clarke, M. & Ringsberg, K. ‘Developing Lay Health
Worker Policy in South Africa: A Qualitative Study’. [www.healthpolicy-
systems.com/content/10/1/8]
8. See the International Labour Organization’s ‘Decent Work Country
Profile for South Africa’. [www.ilo.org/wcmsp5/groups/public/—
dgreports/—integration/documents/publication/wcms_180322.pdf]
9. Less than half the children who enroll in grade 1, finish schooling, and
sexual abuse and pregnancy are a key reason that girls do not finish
school. [http://learningenglish.voanews.com/content/high-dropoutrate-
a-problem-for-south-africa-141919353/608451.html]
10. About a quarter of the country’s population is unemployed according
to the latest figures, and about half the population between the ages of
15 and 34 is unemployed. [www.statssa.gov.za/publications/P0211/
P02114thQuarter2012.pdf]
11. South Africa Police Force’s statistics already speak volumes (see note
3 above), but in the case of sexual violence, reported numbers are only
the tip of the iceberg because of underreporting. The real numbers
may be anything between eight and 25 times the reported numbers.
See Jewkes, R. & Abrahams, N. 2002. ‘The Epidemiology of Rape
and Sexual Coercion in South Africa: An Overview’. In: Social
Science & Medicine, vol. 55, no. 7, pp1231-44; and Gender Links.
‘The War@Home: Findings of the GBV Prevalence Study in South
Africa’. [www.genderlinks.org.za/article/the-warhome-findings-ofthe-
gbv-prevalence-study-in-south-africa-2012-11-25]
12. On the public transport system, see www.ipsnews.net/2012/10/
reducing-poverty-in-south-africa-by-cutting-time-in-traffic/; http://
sacsis.org.za/site/article/758.1.
13. For access to toilets, see http://mg.co.za/article/2012-11-19-access-toadequate-
toilets-hindered-by-blockages-in-the-system; for access to
water, see www.irinnews.org/Report/82750/SOUTH-AFRICA-Thequiet-
water-crisis; for access to healthcare, see www.southafrica.info/
about/health/health.htm#.USdhwqU29SU.
14. See 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’ [www.aln.org.za/downloads/Gender%20Violence%20
&%20HIV2.pdf]; One in Nine Campaign. 2012. ‘‘We Were Never
Meant to Survive’: Violence in the lives of HIV positive women in
South Africa’ [www.oneinnine.org.za]; Amnesty International. 2008.
‘‘I Am At the Lowest End of All’: Rural women living with HIV face
human rights abuses in South Africa’ [www.amnesty.org]; [www.who.
int/gender/documents/sexworkers.pdf Gould, C. 2008. Selling Sex in
Cape Town: Sex Work and Human Trafficking in a South African City.
Pretoria: Institute for Security Studies.
15. See http://apf.org.za/spip.php?article145.
16. Although land had been usurped for at least a century before, the
Native Land Act of 1913 systematised land dispossession by allowing
the white minority population to appropriate over 90 per cent of the
country’s land. The ANC government promised to restore 30 per cent
of agricultural land by 2014; so far, it had restored about 8 per cent,
and some of the reclaimed land is no longer viable agricultural land.
See http://allafrica.com/stories/201211010750.html. Also see Yanou,
M.A. 2009. Dispossession and Access to Land in South Africa: An
African Perspective. Cameroon: Langaa RPCIG; and www.ldd.org.za/
images/stories/Ready_for_publication/V8-2_right_access_land.pdf.
by members of
lesbian, gay, bisexual,
and transgender
communities; it was
in direct response to
the invisibilisation
of these issues that
specialist language
was developed in the
first place. Critiques
of the term ‘corrective
rape’ only point to
the fact that language is a living phenomenon, both serving
the social and ideological context in which it evolves and
shaping discourse and ideology. Perhaps the term served
the important role of drawing attention to a hitherto masked
phenomenon, but it may have outlived its utility, and it
behoves us to rethink its use in the light of its incorporation
into non-liberatory agendas.
FOOTNOTES:
1. For example, see http://pulitzercenter.org/reporting/south-africagender-
inequality-womens-rights-sexual-acceptance; www.pinknews.
co.uk/2012/11/12/south-africa-lesbian-dies-after-being-stabbedwith-
spear/; www.gaystarnews.com/article/south-african-lesbiansoccer-
player-brutally-murdered121112; espn.go.com/video/
clip?id=5181871; www.bbc.co.uk/news/world-africa-13908662; www.
cnn.com/2011/10/27/world/wus-sa-rapes.
2. Not only are the poor poorer, but the rich are richer; inequality in
South Africa is significantly worse today than at the formal end of
apartheid, and it is growing, with South Africa being by far the most
…this discourse misses
the opportunity for creating
common cause with other
struggles and instead
creates hierarchies
of victimisation
among various
marginalised groups…
Mujeres Adelante 30The problem with ‘
corrective rape’
Special edition incorporating MujereS adelante – June 2013 ALQ
human rights organisations, such as Human Rights Watch and
Amnesty International, to support the decriminalisation of sex
work. Obviously, this is not to say that the human rights framework
contributes nothing to social justice; it often helps to shed light
on hidden violations and helps generate social consensus on their
wrongness.
27. See Hallman, K. 2005. ‘Sexual Violence and Girls’ Education
in South Africa’. [http://paa2005.princeton.edu/download.
aspx?submissionId=51448]; CSVR. 2008. ‘A State of Sexual Tyranny:
The prevalence, nature and causes of sexual violence in South Africa’.
Johannesburg: CSVR; Moffett, H. 2006. “‘These Women, They Force
us to Rape them’: Rape as narrative of social control in Post-Apartheid
South Africa”. In: Journal of Southern African Studies, vol. 32, no. 1,
pp129-44.
28. See Mokoena, S. 1991. ‘The Era of the Jackrollers: Contextualising
the rise of youth gangs in Soweto, 1991’. [www.csvr.org.za/wits/
papers/papmokw.htm]; and Wood, K. 2005. ‘Contextualizing
Group Rape in Post- Apartheid South Africa’. In: Culture, Health &
Sexuality, vol. Q7, no. 4 (July-August 2005), pp303-317.
29. See Jewkes,R. et al. 2009. ‘Understanding Men’s Health and Use of
Violence: Interface of rape and HIV in South Africa’. [www.mrc.ac.za/
gender/violence_hiv.pdf]; and Abrahams, N. 2004. ‘Sexual Violence
against Women in South Africa’. In: Sexuality in Africa Magazine, vol.
1, No. 3 [www.arsrc.org/downloads/sia/sep04/sep04.pdf].
30. The other argument in favour of promoting hate crimes legislation
is that a hate crime is a ‘message crime’ that affects communities,
not only individuals, and that the perpetrator was motivated by
hate. While this is true of violence against members of lesbian, gay,
bisexual, and transgender communities, it may be argued that it is no
less true of all gendered violence. See Jacobs, J & Potter, K. 1998.
Hate Crimes: Criminal Law and Identity Politics. New York: Oxford
University Press.
17. See, for example, Biccum, A. R. 2005. ‘Development and the ‘New’
Imperialism: A reinvention of colonial discourse in DFID promotional
literature’. In: Third World Quarterly, vol. 26, no. 6, pp1005-1020.
Also see critiques of aid conditionality at www.sxpolitics.org/?p=7371
and http://staging.awid.org/eng/About-AWID/AWID-Initiatives/IDeA/
Resources-on-Aid-Effectiveness/Conditionalities-Undermine-the-
Right-to-Development.
18. Mathews, S. et al. 2004. ‘Every Six Hours a Woman is Killed by
Her Intimate Partner’. [www.mrc.ac.za/policybriefs/woman.pdf];
Kalichman, S. et al. 2005. ‘Gender Attitudes, Sexual Violence, and
HIV/AIDS Risks among Men and Women in Cape Town, South
Africa’. In: The Journal of Sex Research, vol. 42, no. 4, pp299-305.
19. For example, in August 2012, the president, Jacob Zuma, said on
national television, ‘I wouldn’t want to stay with daughters who are
not getting married. Because that in itself is a problem in society. I
know that people today think being single is nice. It’s actually not
right. That’s a distortion. You’ve got to have kids. Kids are important
to a woman because they actually give an extra training to a woman,
to be a mother’. [http://mg.co.za/article/2012-08-21-zuma-womenmust-
have-children]
20. The counterpart of ‘transgender’, ‘cisgender’ refers to the gender
identity of people whose birth gender (the gender they were declared
to have upon birth) conforms to their lived gender and self-identity.
21. See Forum for the Empowerment of Women. ‘The Rose Has Thorns:
Stories of Hate Crimes Against Black Lesbians in South African
Township’ [https://khanyacollege.org.za/Documents%5CKJ3.pdf];
Mkhize, N. et al. 2010.’ The Country We Want to Live In: Hate crimes
and homophobia in the lives of Black Lesbian South Africans’. [www.
hsrcpress.ac.za/product.php?productid=2282&cat=0&page=1&featur
ed&freedownload=1]; Gay and Lesbian Network of Pietermaritzburg.
‘An Exploration of Hate Crime and Homophobia in Pietermaritzburg,
Kwa-Zulu Natal’. [www.gaylesbiankzn.org]
22. For a critique of the human rights model, see Kennedy, D. 2001. ‘The
International Human Rights Movement: Part of the Problem?’. In:
Harvard Human Rights Journal, vol. 15, pp101-126. For a critique
of undue reliance on the law in feminist struggles, see Menon, N.
2004. Recovering Subversion: Feminist Politics Beyond the Law. New
Delhi: Permanent Black.
23. For example, in late 2010, change.org, ‘the world’s petition platform’,
ran a petition asking the South African Department of Justice
and Constitutional Development (DoJCD) to ‘take action against
corrective rape’. DoJCD responded by setting up a task team in
mid-2011 to ‘attend to LGBTI issues and corrective rape’. Several
activists on the task team had to engage in a protracted discussion with
government representatives on the inadvisability of not articulating
links between violence against lesbians and gender based violence as
a whole. [www.justice.gov.za/m_statements/2011/20110504_lbgtitaskteam.
html]
24. For a striking example of such exclusion at the international level,
see Human Rights Watch’s 2012 The Unfinished Revolution: Voices
from the Global Fight for Women’s Rights. The volume contains two,
non-substantive, mentions of the word ‘lesbian’ (both by a non-staff
person) and gives the impression that no lesbians and bisexual women
have played any role in women’s rights movements anywhere in the
world.
25. S v Moipolai 2005 (1) SACR 580 (B). Among other cases in which
Mogoeng wrote or concurred with decisions that reduced sentences
of convicted rapists of children, in S v Sebaeng (CA 16/2007)
[2007] ZANWHC 25 (22 June 2007), a case involving the rape of
a 14-year-old girl, Mogoeng observed, ‘One can safely assume that
[the accused] must have been mindful of her tender age and thus so
careful as not to injure her private parts, except accidentally, when he
penetrated her. That would explain why the child was neither sad nor
crying when she returned from the shop notwithstanding the rape. In
addition to the tender approach [sic] that would explain the absence
of serious injuries and the absence of serious bleeding, he bought her
silence and cooperation with Simba chips and the R30.00’.
26. A good example of the latter is the refusal of influential international
Dipika Nath is an independent researcher based in
Johannesburg, South Africa. For more information
and/or comments, please contact Dipika
on dipika666@gmail.com.
Mujeres Adelante 31
ALQ June 2013 – Special edition incorporating MujereS adelante
Silenced and forgotten…
or latently. This consistently leads to discrimination against
individuals who belong to these groups through poor access
to justice, inappropriate healthcare services and stigmatisation
– characterised by their being blamed for driving diseases
such as HIV and other sexually transmitted infections (STIs).
Furthermore, the unwillingness of state actors and stakeholders
to engage in meaningful dialogue and research regarding sex
work, gender roles and same sex practices erects barriers
towards appropriate and effective policy formulation.
OSISA2
In 2010, an estimated 68% of
all people living with HIV
resided in sub-Saharan Africa
– a region with only 12% of the
global population. AIDS has claimed
at least one million lives annually
in sub-Saharan Africa since 1998.
Nearly half of all AIDS-related deaths
in 2010 occurred in southern Africa.
The region also continued to account for 70% of all new
HIV infections globally.3 Despite these statistics, women
living with HIV, sex workers, and lesbian, gay, bisexual, and
transgender individuals remain marginalised and excluded from
HIV information, education and communication (IEC). They are
also often left out of treatment, care and support programmes.
Most countries in Africa criminalise sex work activities
and same sex practices in one form or another, either explicitly
Silenced and forgotten…
HIV and AIDS agenda setting paper for women living with HIV,
sex workers and lesbian, gay, bisexual, and transgender individuals in
Southern Africa and Indian Ocean states1
Mujeres Adelante 32Silenced and forgotten…
Special edition incorporating MujereS adelante – June 2013 ALQ
adults worldwide living with HIV and AIDS, half of them
were women.6 The AIDS epidemic has had a unique impact
on women, which has been exacerbated by their role within
society and their biological vulnerability
to HIV infection. Generally, women are at
a greater risk of heterosexual transmission
of HIV. Biologically, women are twice as
likely to become infected with HIV through
unprotected heterosexual intercourse as
men. In many countries, women are less
likely to be able to negotiate condom use
and are more likely to be subjected to
non-consensual sex. Additionally, millions
of women have been indirectly affected by
the HIV and AIDS epidemic. Women’s childbearing role means
that they have to contend with issues such as mother-to-child
transmission of HIV. The responsibility of caring for AIDS
patients and orphans is also an issue that has a greater effect on
women in southern Africa and the Indian Ocean states.
Incidents of violence against women (VAW) – regarded as
any ‘act of gender-based violence that results in, or is likely to
result in, physical, sexual or psychological harm or suffering
to women, including threats of such acts, coercion or arbitrary
deprivation of liberty, whether occurring in public or in private
The lack of recognition, representation, participation
and engagement of these groups further excludes them from
important national health programming and campaigns. It also
denies them their right to be accepted as part
of the community for which policies or laws
are formulated.
Women living with HIV
Women living with HIV in southern
Africa and the Indian Ocean states continue
to suffer grave violations of their human
rights. Women living with HIV have had
their right to reproductive choice taken
away, by denying them the right to conceive
and give birth.4 Authorities in many countries in the region
continue to pay lip service to cases of women living with
HIV being coercively and, in some cases, forcibly sterilised.
In Namibia and Swaziland, cases of women living with HIV
being subjected to coerced sterilisation have been documented
and litigated. In a recent landmark judgment, the High Court in
Windhoek found that the Namibian government had coercively
sterilised three women living with HIV in violation of their
basic rights.5
At the end of 2010, it was estimated that out of the 34 million
…most countries in
Africa criminalise
sex work activities and
same sex practices
in one form or another,
either explicitly
or latently…
Mujeres Adelante 33
ALQ June 2013 – Special edition incorporating MujereS adelante
life’7 – continue to escalate in southern Africa and the Indian
Ocean states. In Zambia, Demographic Health Survey (DHS)
data indicates that 27% of ever married women reported being
beaten by their spouse/partner in the past year – a rate that
rose to 33% for 15-19 year-olds and 35% for 20-24 year-olds.
Fifty-nine percent of Zambian women reported having
experienced violence after the age of 15.8 In South Africa,
7% of 15-19 year-olds reported having been assaulted in the
past year by a current or ex-partner, while 10% reported being
forced or persuaded to have sex against their will9.
Violence against women increases their vulnerability to HIV
by limiting their ability to negotiate safer sex practices. Women
may also be infected with HIV and other sexually transmitted
infections through direct means of violence like rape. In South
Africa and other neighbouring countries in
the region, there has been a growing trend
of violence towards lesbian and bisexual
women by men who claim to be ‘curing’ the
women of their homosexual tendencies. The
attacks also extend to transgender people and
other gender non-conforming women. These
attacks are very violent and many of them
end up in death or permanent injury. This form of violence has
continued to make lesbian and bisexual women and transgender
people more vulnerable to HIV and has been a major barrier to
them accessing sexual and reproductive health services.
Cervical cancer is one of the leading causes of
cancer-related deaths among women in developing countries,
including southern African and Indian Ocean states. Zambia,
for example, has the world’s second highest rate of cervical
cancer and deaths each year. Women who are HIV-infected are
4-5 times more likely to develop cervical cancer than women
who are not HIV-infected.10
Sex Workers and HIV & AIDS
Recent studies continue to confirm that in many southern
African and Indian Ocean states sex workers experience
higher rates of HIV infection than most other population
groups.11 For example, female sex workers
have the highest prevalence of HIV in
Malawi at 70.7%.12 The Swaziland HIV
Bio-Behavioural Surveillance Study
and a Qualitative Study among Most
At-Risk Populations, which was conducted
by Population Services International in
conjunction with Johns Hopkins University
in the United States, showed that HIV prevalence among
sex workers stood at 70.3%.13
Silenced and forgotten…
…barriers towards
appropriate and effective
policy formulation…
Mujeres Adelante 34Silenced and forgotten…
Special edition incorporating MujereS adelante – June 2013 ALQ
Violence and discrimination against sex workers, police
raids, incarceration, and a lack of accessible and relevant
information, evidence-based prevention tools and treatment
services compromise the ability of sex workers living with HIV
to protect their health and receive adequate care, treatment,
and support. Migrant sex workers who are living with HIV
are particularly excluded from access to treatment and care
due to xenophobia and other barriers. Transgender sex
workers seeking transgender-specific healthcare and gay male
sex workers seeking
n o n – j u d g m e n t a l
healthcare are similarly
neglected in most of
the region.14
In cases where
interventions targeted
at sex workers do exist,
these are often confined
solely to female sex workers who have sex with male clients
with none targeting male or transgender sex workers.
Lesbian, gay, bisexual, and transgender individuals and
HIV & AIDS
For same sex practising people in southern Africa and the
Indian Ocean states, like in other parts of the globe, HIV and
AIDS research and programming has focused on men who have
sex with men rendering other same sex practising individuals
invisible in the HIV and AIDS picture.
The belief that women who have sex with women are at
no or low risk of HIV infection has led to the exclusion of
women who have sex with women from HIV prevention
efforts, access to healthcare services, education, treatment and
research15. Specific groups of women are more affected by this
…authorities in many
countries in the region
continue to pay
lip service…
Mujeres Adelante 35
ALQ June 2013 – Special edition incorporating MujereS adelante
exclusion than others, such as women who
have sex with women and are living with
HIV, including those who do not identify
themselves as lesbian or bisexual16. This
social exclusion is in many respects informed
by gender inequities inherent in almost every
country of the world. For this reason, any
HIV prevention, treatment and care
programme for women who have sex with
women must work from the premise that
access to knowledge and services on health
is disproportionate for women and men in a
context where gender inequities persist17.18
There is also a widespread misconception, characterised
by exclusion from research or focus, by both women who
engage in same sex relations and other
stakeholders that women who have sex with
women are not at risk of HIV and AIDS.
In a 2002 study conducted by the Human
Science Research Council (HSRC) in South
Africa, 13% of lesbian women (aged 15–49)
self-reported a positive HIV test result. While
this rate is lower than seroprevalence rates
for heterosexual South African women, it still
represents a substantial number of people for
whom no targeted HIV prevention, treatment
or care services currently exist.19
Same sex practising women in southern
Africa and the Indian Ocean states – and
in South Africa in particular – continue to
experience sexual violence in the form of
rape, and this form of violence increases
their vulnerability to HIV and AIDS and
is an infringement of their sexual and
human rights.
In southern Africa and the Indian
Ocean states today, transgender people continue to remain
at the margins of HIV and AIDS programming, their needs
and issues are under researched and health programming for
transgender people is usually integrated
into programming for men who have
sex with men. The marginalised position
of transgender people can have serious
effects on their quality of life. Overall,
high HIV infection rates, inaccessibility of
health services, high incidence of sexual
violence and murder, and vulnerability to
societal ills, such as substance abuse, can
Silenced and forgotten…
…compromise the
ability of sex workers
living with HIV
to protect their health
and receive adequate
care, treatment,
and support…
…incidents of violence
…continue to escalate
in southern Africa
and the Indian
Ocean states…
Mujeres Adelante 36Silenced and forgotten…
Special edition incorporating MujereS adelante – June 2013 ALQ
all potentially reduce
the life expectancy of
transgender people
in Africa.20
In the context of the
global AIDS epidemic,
sex between men
is significant and
throughout the course
of the global epidemic,
consistently high levels of HIV infection have been found
among men who have sex with men. However, in many
southern African and Indian Ocean states, men who have sex
with men are – like other same sex practicing people – less
visible. Same sex relations are stigmatised, officially denied
and criminalised in most of these states. Most governments
and societies in the region continue to refuse to acknowledge
the existence of same sex practising people in their countries,
although research done in southern Africa, the Indian Ocean
states and other parts of Africa proves otherwise. As a result,
HIV prevention campaigns often only talk about the risks of
heterosexual sex and there is little or no appropriate information
available for lesbian, gay, bisexual, and transgender individuals.
This gives a false impression that they are not at risk and serves
to justify their exclusion from HIV and sexual and reproductive
health services.
Challenges and barriers to accessin g HIV
and sexual and reproductive health services
and rights
During the workshops and consultative meetings conducted
by OSISA, representatives from the women living with
HIV, sex worker and lesbian, gay, bisexual, and transgender
sectors came up with a list of barriers to accessing services
and challenges to attaining a holistic and human rights based
approach to HIV and AIDS programming in the region. The
challenges below are a collective summation of the issues
presented by the three groups. However, in some instances,
where indicated, a particular group faces a specific challenge
or set of challenges that may not necessarily affect members of
the other groups.
Research and knowledge
• Lack of evidence-based and targeted research outlining
the situational needs of women living with HIV,
sex workers, and lesbian, gay, bisexual, and transgender
individuals.
• Research ethics boards not wanting to approve research
on sex work, and lesbian, gay, bisexual, and transgender
…social exclusion
is in many respects
informed by gender
inequities inherent in
almost every country of
the world…
Mujeres Adelante 37
ALQ June 2013 – Special edition incorporating MujereS adelante
Silenced and forgotten…
individuals citing laws, culture, religion and morals for
their rejection.
• Lack of recognition of lesbian women and transgender
people as groups that are vulnerable to HIV and AIDS.
• National research is neither inclusive nor specific as
evident in national demographic health surveys that
exclude sex workers, and lesbian, gay, bisexual, and
transgender individuals.
• Exclusion of women living with HIV, sex workers, and
lesbian, bisexual and transgender individuals from vital
research around microbicides, reproductive cancers,
HPV vaccines and contraceptives.
Legal frameworks and access to justice
Most countries in the region have laws that criminalise
same sex conduct and sex work activities. Even if such
activities are not explicitly outlawed, penal codes based on
so-called ‘morality’, criminalise sexual relations that are
regarded as ‘immoral’, ‘indecent’ or ‘crimes against the laws of
nature’ and so forth.
• Criminalisation of HIV transmission, sex work and same
sex relations also occur in some countries – these laws
are usually structured to target women living with HIV,
sex workers, and lesbian, gay, bisexual, and transgender
individuals who are wrongfully labelled as ‘drivers’ of
the epidemic.
• Poor access to justice – reports of violations of the rights
of women living with HIV, sex workers, and lesbian,
gay, bisexual, and transgender individuals are often
not investigated or taken seriously by both state and
non-state parties.
• Lack of protective policies and their implementation
– where policies exist to mitigate and address the HIV
and AIDS epidemic, they often exclude women living
with HIV, sex workers, and lesbian, gay, bisexual, and
transgender individuals.
• Lack of freedom of association and expression –
some groups, such as sex workers, and lesbian, gay,
bisexual, and
transgender groups,
are often unable
to register as legal
entities and are
therefore denied
legal status, which
deprives them of the
liberty to collectively
demand both
…the marginalised
position of transgender
people can have
serious effects on their
quality of life…
38Silenced and forgotten…
Special edition incorporating MujereS adelante – June 2013 ALQ
Mujeres Adelante their rights and
tailor-made sexual
and reproductive
health and HIV and
AIDS services.
• Lack of legal
recognition of
gender identity –
transgender people
cannot access identity documents in their chosen name
and identity, which negatively impacts on their access to
services and justice.
Access to health
Health service delivery systems do not recognise the diverse
rights of women living with HIV, sex workers, and lesbian, gay,
bisexual, and transgender individuals. Health service providers
also lack training and sensitivity to the specific HIV care,
treatment and support, and sexual reproductive health needs
and rights of women living with HIV, sex workers, and lesbian,
gay, bisexual, and transgender individuals – thereby making
healthcare centres potential sites of exclusion, physical and
emotional violence.
• Health service delivery systems discriminate against
women living with HIV, sex workers, and lesbian, gay,
bisexual, and transgender individuals and lack a human
rights-based approach to service provision.
• Post-Exposure Prophylaxis (PEP) is not always
accessible to women living with HIV, sex workers,
and lesbian, gay, bisexual, and transgender
individuals who have survived rape and other violence
against women.
• Emergency contraceptives are not always accessible.
Women living with HIV, female sex workers, lesbian
and bisexual women, and transgender men who seek
them are often blamed instead of being assisted by
health professionals.
• Healthcare services often do not cater to the specific
needs of women living with HIV, sex workers, and
lesbian, gay, bisexual, and transgender individuals.
Access to information and education
• Lack of tailored Information, Education and
Communication (IEC) material for women living
with HIV, sex workers, and lesbian, gay, bisexual, and
transgender individuals.
• Lack of inclusive campaigns on sexual and
reproductive health and rights affecting women living
…same sex relations
are stigmatised,
officially denied
and criminalised in
most of these states…
Mujeres Adelante 39
ALQ June 2013 – Special edition incorporating MujereS adelante
with HIV, sex workers, and lesbian, gay, bisexual, and
transgender individuals.
• Sex workers, lesbian, gay, bisexual, and transgender
individuals and women living with HIV lack the space,
representation and participation within the information
and education arenas to give legitimate voice to their
communities.
• The media is often discriminatory, non-objective and
biased, evidenced in its lack of – or negative – coverage
of issues related to women living with HIV, sex workers,
and lesbian, gay, bisexual, and transgender individuals,
which further fuels stigma, discrimination and prejudice
against them; increases their vulnerability to HIV;
and makes it even harder for them to access HIV and
AIDS services.
• The media lacks the knowledge, sensitivity and skills
needed for objective reporting on the sexual and
reproductive health and rights of women living with HIV,
sex workers, and lesbian, gay, bisexual, and transgender
individuals, which leads to these groups being denied
access to the media as a critical tool for advocacy.
• The education system does not embrace a culture of
diversity and is therefore not cognisant of the specific
issues affecting women living with HIV, sex workers,
and lesbian, gay, bisexual, and transgender individuals
and has been used to perpetuate intolerance.
Movement building and strengthening
The prevailing legal, cultural, social and religious contexts
are major obstacles to movement building and strengthening
for women living with HIV, sex workers, and lesbian, gay,
bisexual, and transgender individuals.
• Lack of recognition, representation and meaningful
participation of women living with HIV, sex workers,
and lesbian, gay, bisexual, and transgender individuals
and groups leads to exclusion from national health
programming and campaigns.
Silenced and forgotten…
40Silenced and forgotten…
Special edition incorporating MujereS adelante – June 2013 ALQ
Mujeres Adelante • The marginalisation of women living with HIV,
sex workers, and lesbian, gay, bisexual, and transgender
individuals and organisations by the broader human
rights, health and social movements impedes movement
building and strengthening.
• Lack of effective capacity building and organisational
strengthening strategies leads to unsustainability and may
lead to perpetual dependency on external support.
Resource allocation and mobilisation
• There is a lack of national government funding for
women living with HIV, sex workers, and lesbian, gay,
bisexual, and transgender organisations with most of
them not being included in country health programme
budget allocations. In cases where funding does exist, the
allocations are very minimal and insignificant.
• Limited availability of and access
to funds for women living with
HIV, sex workers, and lesbian, gay,
bisexual, and transgender groups
and organisations.
• There is a lack of core support for
women living with HIV, sex workers,
and lesbian, gay, bisexual, and
transgender individuals and organisations, which leads
to organisations being understaffed and inadequately
resourced with key staffing skills and this negatively
impacts on the execution of programmatic interventions.
• Limitations are imposed on activities by having to fit
in with a funding driven programmatic and strategic
approach that may not respond to the needs of women
living with HIV, sex workers, and lesbian, gay, bisexual,
and transgender individuals.
Conclusions
Development programmes work best when they reflect
local realities and respond to both rights violations and
lack of access to services. Basic and ‘beyond basic’ needs
programming should be planned together from intervention
design, with a clear step-by-step process to move from one
to the other. A rights-based approach to
programming is crucial for the achievement
of long term and sustainable empowerment
of marginalised groups.
While the vulnerability of marginalised
groups is widely acknowledged, the
mechanisms that drive this vulnerability
and the measures that will address them
…not cognisant of the
specific issues affecting
women living with HIV,
sex workers, and
lesbian, gay, bisexual,
and transgender
individuals…
are not coherent. Most
laws that increase
their vulnerability are
‘morality’-based and
not evidence or human
rights-based. In this
regard, policies need
to be all-inclusive and
laws – rather than being
punitive, abusive or
enabling of abuse and
discrimination – should be protective of vulnerable people.
Formulated laws and policies must also be complementary
rather than contradictory.
There are a number of actions that can be undertaken in
order to reduce the burden of the epidemic among women.
These include promoting and protecting women’s human
rights, increasing education and awareness among women,
and increasing access to preventative technologies, such as
post-exposure prophylaxis and microbicides. Evidence and
experience show that providing AIDS programmes and services
to those who are most at risk can be hugely beneficial to a
country’s fight against HIV and AIDS. Yet, key affected groups
in the global AIDS epidemic, such as women living with
HIV, sex workers, and lesbian, gay, bisexual, and transgender
individuals are all too often neglected by governments, broader
civil society and international donors. Stigma and cultural
intolerance of same-sex relations and sex work are largely to
blame and until these issues are addressed it will be difficult
to make headway in reducing HIV infection levels among
these vulnerable groups. In turn, this will hinder the wider
global fight against AIDS. Attacking stigma and discriminatory
practices whether based in law or not, will serve to empower
marginalised groups to more effectively inform themselves
about HIV and facilitate access to testing, prevention, treatment,
care and support.
To ensure the response to the HIV epidemic among
marginalised groups is appropriate, it should be based on a
wide range of quality
evidence concerning,
among other things,
behavioural and
epidemiological trends,
human and legal
rights, and programme
monitoring and
evaluation. Furthermore,
such activities
…limitations are
imposed on activities
by having to fit in
with a funding driven
programmatic and
strategic approach…
Mujeres Adelante 41
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Silenced and forgotten…
…the mechanisms that
drive this vulnerability
and the measures that
will address them are
not coherent…
Mujeres Adelante 42Silenced and forgotten…
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should involve a wide variety of people, including affected
communities, governments, the private sector, nongovernmental
organisations, and international partners and organisations.
Recommenda tions for key stakeholders:
Governments should:
• Review and repeal all laws that implicitly or explicitly
criminalise HIV transmission and sex work, and where
applicable enforce protective laws that already exist to
end the marginalisation and exclusion of women living
with HIV, sex workers, and lesbian, gay, bisexual, and
transgender individuals
• Enact and implement laws and policies that create an
enabling environment and ensure equal access to health
and justice services
• Invest in restructuring and capacity strengthening of
healthcare delivery systems to respond to the specific
healthcare needs of women living with HIV, sex workers,
and lesbian, gay, bisexual, and transgender individuals
• Hold perpetrators of violence against women living
with HIV, sex workers, and lesbian, gay, bisexual, and
transgender individuals accountable for their crimes and
enforce stiffer punishments
Civil Society should:
• Advocate for
laws/clauses in
constitutions and
other legislation
that prohibit
discrimination of
any kind based
on an individual’s
sex, gender,sexual orientation, HIV status, choice of
profession or any other status.
• Advocate for evidence-based health programming
that reduces HIV transmission and protects the sexual
and reproductive health and rights of women living
with HIV, sex workers, and lesbian, gay, bisexual, and
transgender individuals
• Work with the media to respect and uphold the sexual
and reproductive health and rights of sex workers,
women living with HIV, and lesbian, gay, bisexual,
and transgender individuals by objectively reporting
on issues
• The media should uphold ethics and strictly adhere
to codes of conduct as prescribed in various national,
regional and international instruments
…attacking stigma
and discriminatory
practices whether
based in law or not,
will serve to empower
marginalised groups…
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Silenced and forgotten…
• Ensure mutual and meaningful
partnerships exist between all
social movements, particularly with
women living with HIV, sex workers,
and lesbian, gay, bisexual, and
transgender movements
UN Women should:
• Urge governments to repeal punitive
laws, like the criminalisation of
HIV transmission, sex work and adult consensual same
sex relations
• Ensure that programming on violence against women
includes women living with HIV, sex workers, and lesbian,
gay, bisexual,
and transgender
individuals
Donors and International
Partners should:
• Fund and support
the transformation
of the public
health service
so that it responds to the specific HIV treatment,
care and support needs of women living with HIV,
sex workers, and lesbian, gay, bisexual, and
transgender individuals
• Ensure that funding for vital research around
microbicides, reproductive cancers, HPV vaccines
and contraceptives includes women living with HIV,
sex workers, lesbian and bisexual women, and
transgender people
• Provide core support to women living with HIV,
sex workers, and lesbian, gay, bisexual, and transgender
organisations in order to enhance their development
and strengthen movement building, and to ensure their
equal and meaningful participations in programming and
policy formulation
…ensure that
programming on violence
against women includes
women living with HIV,
sex workers, and lesbian,
gay, bisexual, and
transgender individuals…
Mujeres Adelante 44Silenced and forgotten…
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FOOTNOTES:
1. This article is an excerpt from the report ‘Silenced and Forgotten:
HIV and AIDS agenda setting paper for women living with HIV, sex
workers and lesbian, gay, bisexual, and transgender individuals in
southern Africa and Indian Ocean states’ published by OSISA and
UN Women in March 2013, reprinted with the permission of OSISA.
[http://www.osisa.org/sites/default/files/open_policy_-_sileneced_
and_forgotten.pdf]
2. Open Society Initiative for Southern Africa [www.osisa.org].
3. UNAIDS. 2011. World AIDS Day Report. [http://www.unaids.org/
en/media/unaids/contentassets/documents/unaidspublication/2011/
jc2216_worldaidsday_report_2011_en.pdf]
4. [www.osisa.org/hiv-and-aids/namibia/they-took-my-choice-away]
5. [www.osisa.org/hiv-and-aids/namibia/namibia-coercively-sterilisedhiv-
women]
6. [www.unaids.org]
7. Declaration on the Elimination of Violence against Women, Article 1,
1993.
8. Kishor, S. & Johnson, K. 2004. Profiling Domestic Violence – A Multi-
Country Study. Calverton, Maryland: ORC Macro.
9. South Africa DHS, 1998 as cited in in Population Council. 2008.
Sexual and gender based violence in Africa: A literature review.
[www.popcouncil.org/pdfs/AfricaSGBV_LitReview.pdf]
10. Zambia leads in early cervical cancer detection, treatment; Kristie
Mikus (PEPFAR) Country Coordinator, Zambia.
11. UNAIDS. 2008. Report on the Global AIDS Epidemic. [www.unaids.
org/en/media/unaids/contentassets/dataimport/pub/globalreport/2008/
jc1510_2008globalreport_en.zip]
12. UNGASS Country Progress Report .2010. ‘Malawi HIV and AIDS
Monitoring and Evaluation Report: 2008-2009.
13. [www.osisa.org/hiv-and-aids/swaziland/shocking-hiv-rate-amongswazi-
sex-workers]
14. [www.soros.org/reports/rights-not-rescue]
15. See also Gomez, C.A. 1995. ‘Lesbians at risk for HIV: The unresolved
debate’ In: Herek, G & Greene, B. (Eds.). AIDS, identity, and
community: The HIV epidemic and lesbians and gay men. Thousands
Oaks, CA: Sage Publications. pp19-31; Stevens, 1993 as cited in
Montcalm D.M. & Myer, L.L. 2000. ‘Lesbian Immunity from HIV/
AIDS: Fact or Fiction?’. In: Journal of Lesbian Studies, 4(2); Hughes
C. & Evans, A, 2003. ‘Health needs of women who have sex with
women: Healthcare workers need to be aware of their specific needs’.
In: BMJ: British Medical Journal, 327(7421), pp939-940; Teti, M.
et al. 2007. ‘Present but not accounted for: Exploring the sexual risk
practices and intervention needs of non-heterosexually identified
women in a prevention program for women with HIV/AIDS’. In:
Journal of LGBT Health Research, 3(4) [www.haworthpress.com];
Gay Mens Health Crisis. 2009. HIV risk for lesbians, bisexuals
and other women who have sex with women (WSW), Published by
Womens Institute.
16. See also Young, R.M. et.al. 1992. ‘Assessing risk in the absence of
information: HIV risk among women injection-drug users who have
sex with women’. In: AIDS Public Policy Journal, 7(3), pp175-183;
Marrazzo, J.M. 2000. ‘Sexually transmitted infections in women who
have sex with women: who cares?’. In: Sexually Transmitted Infection,
76, pp330-332; Arend, E.D. 2003. ‘The politics of invisibility:
HIV-positive women who have sex with women and their struggle
for support’. In: Journal of Assoc Nurses AIDS Care, 14(6), pp37-47;
Shisana, O. & Louw. J. 2007. ‘Missing the women’: exploring key
challenges in policy responses to HIV/AIDS. In: Prince, B., Louw, J.,
Roe, K. & Adams, R., Eds. Exploring the challenges of HIV/AIDS:
Seminar proceedings. Cape Town: HSRC Press, pp 29-53; Lenke, K.
& Piehl, M. 2009. ‘Women Who have Sex with Women in the Global
HIV Pandemic’. In: Dev, March, 52(1), pp91-94.
17. See Doyal, L. 1995. What makes women sick? Gender and the
political economy of health. London: MacMillan; Lorber, J. 1997.
Gender and the social construction of illness. New Haven, CT: Sage.
18. Cloete, A., Sanger, N. & Simbayi, L.C. 2010. Are HIV positive
women who have sex with women (WSW) an unrecognized and
neglected HIV risk group in South Africa?. In: Journal of AIDS and
HIV Research. 2(8):Online.
19. [www.iglhrc.org/cgi-bin/iowa/article/publications/
reportsandpublications/4.html]
20. HIV & Transgender Identity: Towards Inclusion and Autonomy.
A position paper developed by 19 Transgender activists from an
African Exchange Programme. [www.genderdynamix.co.za/content/
view/519/199/]
For more information and/or comments,
please contact Chivuli Ukwimi on ChivuliU@osisa.org.
Mujeres Adelante
Lynn Darwich
You’re probably eager to hear
the sad and heart-wrenching
stories of queer women and trans
persons back home, with an
inspiring conclusion on strategies
to overcome, but I will not be
talking this. I will not be talking
about tortures, killings, violence
and discrimination based on sexual
orientation and gender identity on
this panel.
Instead, what I want to explore here is a status update
written by one of my closest friends, Zainab, also known as
Abdo, a few days ago. He said that we were more powerful
when we were underground. I think what Zainab/Abdo was
referring to, is our complicity, as growing movements, with
the policing and preservation of the difference between those
who can and want to conform to categories of normativity,
respectability, and value, and those who are outside of
these categories.
For over a decade now, social justice movements in Lebanon
have been fighting for women’s right to pass on the nationality
to partners and children; for the protection of women and girls
from family violence, and that includes marital rape; to abolish
the sponsorship system for migrant workers, with a focus on
female domestic workers in particular; to stop ‘virginity tests’
for women and girls who report cases of sexual assault; to
bring to an end the ‘egg test’ that supposedly criminalises men
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ALQ June 2013 – Special edition incorporating MujereS adelante
On normativity, respectability, and va lue
Collateral Damage…
On normativity, respectability, and value
Mujeres Adelante 46On normativity, respectability, and va lue
Special edition incorporating MujereS adelante – June 2013 ALQ
who have had anal sex; to legalise safe abortion; to include
affirming comprehensive sexuality education programmes in
school curriculums; to legalise civil marriage; to abolish the
sectarian system that reproduces dangerous forms of cultural
nationalisms. We have been fighting for these issues and many
more, with very little progress in terms of policy change, if
any at all. Most of the time, it looks as though we are actually
regressing and losing ground. The question is why?
In our failure to connect racialised, gendered, and sexualised
devaluations of human
life, our movements
have, more often than
not, failed to challenge
systems of oppression,
and have instead
sustained hierarchies that
rely on neo-liberal forms
of normativity. We cannot
talk about gender-based
violence, and violence based on sexual orientation and gender
identity, without an analysis of the racialised, sexualised and
gendered devaluation of human life, the world over. We cannot
talk about any of this, without looking at today’s normative
standards that define the value and level of respectability
that, in a given society, a
human being supposedly
deserves. In other words,
for each of us to ask
ourselves, ‘what is it that
makes me deserve to be
a respected and valued
human being?’.
In December 2011,
Secretary of State
Hillary Clinton declared to the world what is now possibly the
most famous speech in LGBT history. She said,
…like being a woman, like being a racial religious tribal
or ethnic minority, being LGBT does not make you less
human. And that is why gay rights are human rights and
human rights are gay rights.
Like war drums, this statement reverberated across
the world.
At home, the implications of such a speech are tremendous.
With increasing drone attacks in Pakistan and Afghanistan, and
with Israeli jets frequently hovering over my head and violating
my airspace, at which point does ‘the switch’ exactly happen?
When am I a universally recognised and respected member
…our complicity, as
growing movements,
with the policing and
preservation of the
difference…
…our failure to connect
racialised, gendered,
and sexualised
devaluations of
human life…
Mujeres Adelante 47
ALQ June 2013 – Special edition incorporating MujereS adelante
On normativity, respectability, and va lue
of the so-called global lesbian, gay, bisexual, and transgender
community, and when am I collateral damage?
Audre Lorde says,
…there is no such thing as a single-issue struggle
because we do not lead single-issue lives.
And this is true more than ever. I will not sit here and
congratulate governments that speak up on sexual and bodily
rights on one hand, but who naturalise and
instigate racialised violence and exploitation
on the other. I refuse to let my body be used
by regimes of power this way. I refuse to
bargain with a government, my own, when at
every corner, the basic rights of working class
citizens, women, young people, migrants, and
refugees are undermined to preserve and protect an imagined
sectarian balance in the country.
In trying to organise against all of these conservative
currents, all of us here have compromised well enough to sustain
this world order, and to perpetuate and replicate its violence in
our communities. Our superficial understandings of movement
building and solidarity are violent. Our sense of entitlement is
violent. Our entitlement to privileges that cannot contain and
that will always compromise the rights of the working class, the
gender nonconforming, the sex workers, the refugees and the
migrants is violent. Our victimisation is violent. Our reliance on
funding – one of the main development tools that standardise
organising efforts turning them into 9 to 5 jobs – is violent.
Our complicity with the military industrial complex and the
institution of marriage is violent. Our victories are violent.
My critique is an acknowledgment of the tremendous
efforts that are exerted in spaces like the CSW every year for
progressive outcomes that can hopefully
speak to people’s realities back home. It is
here as a reminder of the absurdity around
some of the compromises we’ve had to make
along the way for small wins. But it is also
here as a reminder of the radical potential of
our movements, that what we need right now,
more than ever, is a paradigm shift.
FOOTNOTES:
1. This article is based on a paper presented at the Panel
‘Killings and violence against women based on sexual
orientation and gender identity’ at the Commission on the
Status on Women on 05 Mar 2013, in New York.
Lynn Darwich is with the Coalition for Sexual
and Bodily Rights in Muslim Societies. For more
information and/or comments, please contact her
on corrdinator@csbronline.org.
…what we need right
now, more than ever, is
a paradigm shift…
Mujeres Adelante 48Meaningful Investment in Women Living with HIV and AIDS
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Luisa Orza
T wenty years ago, at the 1992 International AIDS
Conference, held in Amsterdam, 55 women
living with HIV stormed the conference stage in
protest about the lack of recognition of issues affecting them,
and their own lack of voice to platform those issues. This event
marked the birth of the International Community of Women
Living with HIV and AIDS (ICW).1
The principle of community engagement has been codified
in various political commitments since then, going back to the
coining of the principle of the Greater Involvement of People
Living with HIV (GIPA) in the 1994 Paris Declaration2, and
reiterated in the 2001 UNGASS Declaration of Commitment3,
and the Political Declarations of 20064 and 20115.
While this principle represents one of the most potentially
enduring – and truly transformative – characteristics of the
HIV response, nevertheless, women living with HIV and other
key affected women, continue to face significant challenges
and barriers to accessing political spaces for meaningful
participation and to realising their leadership. Moreover,
these challenges remain largely unchanged over the last
decade. Women and HIV activists have been talking about the
same things for so long now, that GIPA (or better, MIWA: the
meaningful involvement of women living with HIV) -fatigue
must be setting in. Yet, take our eye off the ball, and the
back-slide occurs in a flash.
At the International AIDS Conference in Washington DC
in July 2012, the planning failed to include a woman living
with HIV among plenary speakers. The Make Women Count
movement was quick to respond and push back, resulting in
Linda Scruggs’ extraordinary and powerful plenary presentation,
which acknowledged both MIWA-fatigue, and the on-going
challenges faced and solutions sought by women, for women:
MIWA…
Meaningful investment in women living with HIV and AIDS
The centrality and value of involving women living with HIV and other key affected women in all
aspects of the HIV response has long been recognised, but it was not – and is not – always thus.
Mujeres Adelante
I’m not going to ask you for anything. I think women
have been asking for the last two decades … We’ve
decided to stop asking, and maybe you just need
the recipe. To turn the tide on behalf of women, we
must do [the following]: we must
accurately count all women in all
of our diversity into research … We
must meaningfully involve women at
all levels, within our governments,
within our local communities, within
organizations … We need to put
women in a position of leadership
and authority within the titles that they
serve. We are not just asking for male-run
organizations that will tolerate a women’s
program, we want women to have the tools
to follow the research for us, by us, with
us … We need to be part of the solution;
we need the support; resources that…give
us the power to heal our sisters, to change
our world.
[Linda Scruggs, AIDS2012, Wednesday
25th July 2012]
Meaningful involvement
The engagement of women living with HIV in the
HIV response has both intrinsic and
instrumental value. Intrinsically,
participation is a human right. But this
must not reduce women’s involvement
to a tick-box exercise. The meaningful
involvement of women living with HIV in
decision-making which effects their lives
also ensures that other rights are protected.
…these challenges remain
largely unchanged
over the last decade…
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Meaningful Investment in Women Living with HIV and AIDS
Mujeres Adelante 50Meaningful Investment in Women Living with HIV and AIDS
Special edition incorporating MujereS adelante – June 2013 ALQ
Policy and programming around vertical transmission of HIV,
such as the Global Plan to Eliminate New HIV Infections
in Children by 2015 and Keeping Their Mothers Alive, and
the introduction of ‘Option B+’ appear to
be strong from a bio-medical perspective.
However, the Global Plan neglects to
reinforce some of the most entrenched HIVrelated
rights, including confidentiality,
voluntary testing, and informed consent.
Similarly, Option B+ prioritises treatment
as prevention over treatment for the primary
purpose of improving the health and
well-being of a woman living with HIV.
The voices of women living with HIV need to be heard to
ensure that fundamental rights, such as these, are upheld and
protected, while we enjoy the fruits of bio-medical advances
such as ARVs, PrEP and prevention of vertical transmission.
At the same time, the engagement of women living with
HIV can RAISE6 the effectiveness of the response, first by
ensuring that policies and programmes are aligned with
principles of Rights, Access, Investment, Security and Equity
in the first place; second by alerting policy and programme
makers to overlooked or emerging barriers and challenges
affecting them; and third by acting as ‘critical enablers’ in the
response, by educating, sensitising, mobilising and providing
services within communities around them. These efforts help
to ensure (among other things) the uptake
of existing services, that hard to reach
populations are reached, and that quality
of care is monitored. Networks of women
living with HIV play a vital role in acting
as a conduit between on-the-ground reality
and high level decision-making. Increased
effectiveness is vital at a time of global
economic crisis and an overall ‘shrinkage’
of resources available for the HIV response
at the level of government, multi- and bi-lateral donors and
civil society.
Spaces for women
The Women’s Networking Zone (WNZ) is a community-focused
and -led forum running parallel to the International AIDS
Conference since 2000. It provides an alternative free space for
women to meet and share ideas alongside the main conference.
A founding principle of the Women’s Networking Zone
has been to promote the leadership of women living with
…a vital role in acting
as a conduit between
on-the-ground
reality and high level
decision-making…
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Meaningful Investment in Women Living with HIV and AIDS
HIV, and to showcase the ways in which
women living with and affected by HIV
are spearheading the HIV response. Core
WNZ partners include networks and
organisations of women living with HIV,
such as ICW Global, Voices of Positive
Women, the Blueprint Coalition, and
Salamander Trust. And each successive
WNZ to date has seen a greater
representation of women living with HIV.
At AIDS2012, 87% of the WNZ sessions
were run by, in partnership with, or with the engagement
of, women living with HIV as presenters and participants,
and the MIWA principle was cross-cutting through nearly
all sessions.7
It is crucial that women continue to carve out a space to
address the nuanced concerns facing women, especially
women living with HIV. If we do not continue to create
these spaces, women’s concerns will fall to the end of
the agenda.
[Participant, WNZ@AIDS2012]
Yet, as funding for the HIV response flat-lines (or
worse), the walls are beginning to close in on spaces like
the Women’s Networking Zone. Despite demand for the
WNZ@AIDS2012 being the greatest to date, the financing
of the Zone was nail-biting stuff; piecemeal, last-minute, and
hugely labour-intensive in its achievement, administration
and accountability.
One thing
remains abundantly
clear: outside of
‘women’s spaces’, and
despite the proven
gains of community
engagement, we still
…increased effectiveness
is vital…
Mujeres Adelante 52Meaningful Investment in Women Living with HIV and AIDS
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face great resistance to
having people reserve
us a seat at the table.
What for some is a core
principle remains for
others a happy bonus:
an extra, if resources
suffice. And in times
of global recession
and the development community’s
de-prioritisation of funding for HIV as we
begin to embark on a post2015 paradigm,
that is a big, big ‘if’.
Meaningful investment
And the reservation of seats is not enough.
Engagement is not a simple matter of
turning up at a meeting. To transform
that seat into a place of meaningful
engagement and leadership requires a
serious and committed investment of resources to ensure that
those with seats are truly representative of those without.
Among others, issues that continue to stand in the way
of HIV-positive women’s meaningful involvement and
leadership include: literacy – including rights literacy –
language barriers, and lack of access to information; insecure
livelihoods; stigma, discrimination and violence against
women living with HIV at household, community, and
institutional levels; voluntarism, the burden of care, burnout,
and the lack of recognition for the contribution grassroots
women have made to the HIV response, largely through the
investment of their own resources; lack of specific skills to
engage with policy, budgeting, monitoring and evaluation
and accountability frameworks from a human rights and
gender perspective; lack of funding to organise and engage;
…ensure that those
with seats are truly
representative of those
without…
Mujeres Adelante 53
ALQ June 2013 – Special edition incorporating MujereS adelante
Meaningful Investment in Women Living with HIV and AIDS
patriarchal gender norms which result in a heavy burden of
domestic and reproductive work, and underrate the potential
and value of women’s political representation and leadership.
Securing a (lasting) place at the table for women living
with HIV is step one. Beyond this, governments and
development partners must:8
1. Provide a range of accessible funding options,
including core funding and seed grants for women’s
organisations and networks
2. Develop mechanisms, tools, and processes to ensure
the meaningful participation of women living with
HIV in the planning
and budgeting
processes of national
AIDS strategies,
operational plans,
and accountability
frameworks, as well
as in monitoring
expenditures and
results
3. Invest in training and capacity strengthening
for women’s organising and leadership beyond the
delivery of care and support services, to enhance
engagement in policy processes; and, promote social
protection mechanisms to meet material needs, as well
as empower women through skills development
4. Ensure women’s access to information: invest in
legal literacy and rights awareness among women,
especially women living with HIV, including through
translation of relevant legal and policy resources into
local languages
5. Strengthen capacity among implementers and policy
makers to effectively engage in two-way learning and
dialogue with women living with and affected by HIV
6. Invest in women’s HIV prevention, care and
support programmes; documentation and sharing of
good practice
7. Bridge the disconnect between national and local
decision-making processes to ensure women’s voices
are carried through from local to national levels
…securing a (lasting)
place at the table for
women living with HIV is
step one…
Mujeres Adelante 54Meaningful Investment in Women Living with HIV and AIDS
Special edition incorporating MujereS adelante – June 2013 ALQ
8. Address cultural barriers, patriarchy
and gender norms that prohibit
women’s engagement, including
through
a. addressing the gender division
of labour, so as to create time
and space in women’s domestic
labour, for women’s effective
engagement in the public sphere
b. engaging men and boys to break down gender norms/
cycles, and promote gender equality, and
c. sensitising men to the importance of women’s
political participation
9. Work with women’s
organisations and
networks to define
benchmarks and
articulate indicators of
success for women’s
meaningful participation
10. Transform signatures
into action: implement existing normative
frameworks that uphold women’s
rights, and promote women’s political
representation
I have a dream …
The hosting of AIDS2012 in
Washington DC called to mind other social
justice movements that have converged
on this city. 2013 marks 50 years since Martin Luther
King’s immortal ‘I have a dream’ speech; and in homage to
that moment, the Salamander Trust9 filmed a collection of
…invest in legal literacy
and rights awareness
among women…
Mujeres Adelante 55
ALQ June 2013 – Special edition incorporating MujereS adelante
Meaningful Investment in Women Living with HIV and AIDS
60-second ‘dreams’ from women living with HIV. Here is
one, which I think speaks for many.
I think my dream may be as follows: ‘I have a dream
that one day we women will no longer need to remind
the powers that be in the world – that we exist. That
in my lifetime all women and girls, including those of
us who are living with HIV, are recognized as having
the same human
right to health, to
participation in the
world and to dignity
as men and boys.
That in my lifetime
we will no longer
have to strive to
remind the world that without us it would collapse. I
have a dream that one day, soon, all this – which is just
a basic human right – will no longer be a dream, but
a reality’.10
[Alice Welbourn, Founder and Director,
Salamander Trust]
FOOTNOTES:
1. See www.icwglobal.org.
2. See http://data.unaids.org/pub/externaldocument/2007/
theparisdeclaration_en.pdf.
3. See http://data.unaids.org/publications/irc-pub03/aidsdeclaration_
en.pdf.
4. See http://data.unaids.org/pub/report/2006/20060615_hlm_
politicaldeclaration_ares60262_en.pdf.
5. See http://daccess-dds-ny.un.org/doc/UNDOC/LTD/N11/367/84/
PDF/N1136784.pdf?OpenElement.
6. See http://aidsconsortium.org.uk/wp-content/uploads/2012/06/Raisethe-
Bar1.pdf.
7. See www.athenanetwork.org for more details and a full programme
of events at AIDS2012.
8. These standards for meaningful participation are drawn from a
satellite session at AIDS2012 on ‘Women Leading, Organizing
and Inspiring Change in the AIDS Response’ hosted by UN
Women in partnership with UNAIDS, ATHENA Network, Huairou
Commission, and the Canadian International Development Agency.
9. See www.salamandertrust.net.
10. See also Welbourn, A. ‘Is There a Future for Women Living with
HIV?’ [www.opendemocracy.net/5050/alice-welbourn/is-therefuture-
for-women-living-with-hiv]. This article is part of a series
of articles commissioned for openDemocracy during AIDS2012,
and edited by Alice Welbourn. To see the whole series, go to www.
opendemocracy.net/5050/aids-2010-rights-here-right-now. …articulate indicators
of success
for women’s
meaningful participation…
Luisa Orza is a women’s rights and HIV activist.
For more information and/or comments,
please contact her on luisa.orza@gmail.com.
Mujeres Adelante 56Ca mpa ign Messages
Special edition incorporating MujereS adelante – June 2013 ALQ
Supported by the
Oxfam HIV and AIDS Programme (South Africa)
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Campaign Messages…