Project Description

In Focus…
Human rights:
From principle to practice…
What’s inside:
Women’s Voices:
I don’t know
what’s going to
happen…
Women’s Realities:
Successes and
tribulations…
One the margins
Redefining who is
‘key’…
Special Report:
The power of
storytelling…
In our busy world
of work in the ‘
rights-based sector’
we rarely have
time or resources
to engage our
constituencies in
evaluating our
practice, to get
in-depth feedback
on their experiences of
engagement in projects,
and to jointly reflect on
the achievements and
challenges that can enrich
our practice. The AIDS Legal
Network (ALN) had one
such opportunity when a
three-year project funded
by the United Nations
Trust Fund to End Violence
against Women (UNTF) was
subject to an extensive
external evaluation that
was finalised in April 2015.
This evaluation included
a focus on promising
and emerging good
practice models and key lessons
learned that could be shared with
other practitioners on addressing
HIV-related violence against
women. This article looks at
some of the rich feedback by
women and other stakeholders
engaged in the project with
a particular focus on their
understanding and experiences
of working with ALN.
The context
The project had the overall
goal of enhancing women’s
access to, and benefit from,
available HIV prevention,
testing, treatment, care and
support services without fear
of violence and other rights
violations. The project operated
within three provinces, namely the
Eastern Cape, Western Cape and
KwaZulu Natal.
ALN used a multi-pronged
approach that sought to lobby
policy makers and service
providers, whilst at the same time
ensuring enhanced levels of legal
literacy and capacity to advocate
for the protection of women’s rights
in the context of HIV amongst
women and their communities.
In this way, the project sought to
facilitate a change in the societal
Mujeres Adelante 09 – 12 June 2015
Newsletter on women’s rights and HIV •7th SA AIDS Conference • Durban
Jayne Arnott
It needs to start with us as women understanding our rights; which goes beyond pregnancy, goes
beyond marriage, goes beyond relationships, it is about understanding my rights as a woman.1
2 7th SA AIDS Conference • Durban • 09 – 12 June 2015
context that perpetuates HIV-related
violence and other rights abuses as
experienced by women living with
HIV, and as such increased the
extent to which women are in the
position to access HIV prevention,
testing, treatment, support and care
services free of violence and other
rights abuses, and to access redress
mechanisms as and when rights
violations occurred.
Human rights approach…
The core principles of a ‘human
rights approach’, as outlined by
the United Nations Office of the
High Commissioner for Human
Rights, that this article will focus
on are related to empowerment,
participation, equality,
non-discrimination, and attention to
‘vulnerable’ groups:
These principles should underpin
rights-based practices with the
understanding that:
• Empowerment is about
shifting the focus from need
to rights, with individuals
and communities knowing,
claiming and defending their
rights, as well as knowing their
responsibilities
• It calls for active, free and
meaningful participation by
individuals and communities in
this process
• Equality and non-discrimination
are fundamental issues central
to all human rights and justifies
prioritisation of groups towards
ensuring particular protection
and promotion of the rights of
these groups. These groups are
‘vulnerable’ to rights violations
by virtue that they are perceived
by society as being ‘different’ or
by being excluded from power.
This understanding of equality
and non-discrimination is central
to work around access to rights
and recourses, as it defines, directs
and justifies work and resources
towards addressing inequality;
especially since it relates to people
excluded from power and those
perceived as ‘different’ with the
complex and multiple intersections
in between.
ALN’s approach is firmly
rooted within this human rights
approach framework and this was
evident within the evaluation with
women sharing their increased
understanding of dominant societal
norms and values that violate their
rights, and increasingly transferred
this towards exploring their own
understanding and perceptions of
what constitutes being ‘different’
within a framework of dominant
societal norms and attitudes. This
also led to women increasingly
engaging with issues beyond
violence against women living
with HIV towards exploring more
broadly the inequalities and rights
violations related to gender, sexual
orientation, gender and gender
stereotyping, disability and youth.
With this came increased awareness
and acceptance of ‘difference’ and
for some women, applying this to
their daily lives within their families
and communities.
From principles to practice: What
did participants have to say
about ALN’s approach overall?
…we like the ‘provocativeness’
of ALN staff; they are always
provoking, there is no change
I believe without provoking a
situation. ‘Hunky dory’ means
no change…
…understanding
and realisation
in the context
of participants’
lives, as
compared
to giving
information in a
vacuum…
7th SA AIDS Conference • Durban • 09 – 12 June 2015 3
…it opened my box…
…ALN comes with ideas
that we don’t know and this
helps us…
In the evaluation of the project,
participants spoke about how
ALN was different to other
organisations, they spoke about
an approach that opened their
minds, made them think ‘out of
the box’, challenged their beliefs
and perceptions, and ultimately
changed them.
This concept of ‘provoking’, of
challenging and ‘mind opening’
was reported by participants
as viewing themselves and the
contexts in which they lived
differently. This led to increased
confidence, increased self-esteem
and women themselves noting
shifts from passive acceptance to
active agency in addressing rights
violations against them. Parallel
to this process was the organic
development of support structures
by women within the communities
concerned that supported joint
movement from knowledge gain
and individual change toward
collective and/or supported
individual actions.
How does ALN do this?
…The other workshops they do
it, like if I am a facilitator, they
facilitate, they don’t get you to
join in with the conversation,
they don’t do the dialogues. ALN
makes the people debate what is
happening in your homes, even
if you don’t know each other; yes
they are very good at that. She
makes them speak, even if you
are just sitting there she asks you
what do you think about that
and then you talk…
…Even the youngsters, they even
debate and they enjoy it…
ALN has developed a highly
interactive and participatory
methodology within capacity
building activities whereby
facilitators present a range of
scenarios to introduce concepts
of equality and rights, without
giving much input or answers, but
allowing participants to process
and reach their own conclusions.
These sessions facilitated processes
of understanding and realisation in
the context of participants’ lives, as
compared to giving information in
a vacuum.
…In this area people always
look at each other differently
but now sitting in a group of
different people, faces, cultures
and languages then you know
there are people who really care
and by [ALN] coming in here
with discussions about things
and we can say how we feel or
not feel and nothing that we do
or say is actually wrong because
that’s our choice. That’s what I
have come to learn, we all have
choices in life no matter if it is
the wrong choice my choice is
mine…
This methodology ‘breaks down’
perceived differences and creates
safe spaces for women to speak out
and claim their own agency. The
caring element that was reported
on is significant, as this is central to
creating safe and non-judgmental
spaces for participants to engage
and for participation to become
‘meaningful’.
…What also makes them
[ALN] different is that in most
cases they will find out from
the women themselves what
they think will work, in order to
correct what they need, whatever
is not ok. Other organisations
will just target women. During
the research women were
involved, there were meetings
with women and they were part
of the solutions…
This project was grounded in the
participation of women living
…safe spaces
for women to
speak out and
claim their own
agency…
…lasting change
happens very
slowly, and
needs to begin
from where
people find
themselves…
with HIV and/or affected by
gender violence with the core aim
of engaging and ‘empowering’
women to take ownership of the
project processes and affect real
positive change in their lives on
a personal, family, community
and access to services level. From
the outset activities were planned
to maximise participation and
‘empower’ women to take activities
forward, thus the research
component led to community
awareness work, led to women
engaging in further learning and
development of personal agency
that increasingly led women,
individually and collectively, to
assert themselves and advocate for
positive changes during and after
the project cycle ended.
Non-adversarial approach…
…Another thing is most of
the time we were blaming each
other, like the clinic didn’t do
this, the police didn’t do that,
but ALN taught us we must not
direct our anger to a person or
an institution. Like we had a
march for non-violence and even
the media asked us why didn’t
you march to the clinic or to
the police station because we
marched in the community and
we said no the violence is all over
you will find it at home so if it
is part of the community let us
come to the community and find
the solutions…
ALN was very aware that the
knowledge and evidence base
this project generated contained
detailed findings regarding a
range of rights violations that
could potentially lead to service
providers becoming defensive
and reactive within the project
activities. In order to ensure
ongoing engagement with service
providers, ALN adopted the
approach of ‘advocating for’ the
protection of women’s rights
within service provision and at
a community level, as compared
to ‘advocating against’ the
occurrence and prevalence of
rights violations experienced by
women living
with HIV.
This was a highly successful
approach, although not equally
across all the project areas.
Service providers were indeed
willing and prepared to be part
of the solution and to become
‘agents of change’ so as to
enhance women’s access to and
benefit from available services,
including redress mechanisms as
and when rights violations occur.
Participants and partner
organisations engaged within the
project also reported adopting
this approach in their own work
and their daily lives.
Conclusion
Lasting change happens very
slowly, and needs to begin from
where people find themselves,
within the complex inter-relations
in people’s lives, including
geographical, cultural, as well as
intellectual. This project, given its
duration over three years, provided
an opportunity to engage on a
deeper and ongoing level utilising
a methodology that is based on
meeting people where they are, with
the understanding that for people
to internalise new information,
attitudes and practices, it has to
originate with them.
Practitioners and donors alike
should be encouraged to support,
promote and resource participatory
and community-based multipronged
projects that run over a
long-term period, as these do yield
significant results.
FOOTNOTES
1. All the quotes in this article are
comments from ‘beneficiaries’ of
the project participating in the
external evaluation process..
Jayne is an independent consultant
based in Cape Town, South Africa.
For more information:
jayne.arnott@gmail.com.
…for people to
internalise new
information,
attitudes and
practices, it has
to originate
with them…
4 7th SA AIDS Conference • Durban • 09 – 12 June 2015
7th SA AIDS Conference • Durban • 09 – 12 June 2015 5
Women’s Voices…
I don’t know what’s going to happen…
Women’s perceptions of rights abuses and access to redress
…sometimes if you go to report, you are likely to get more of what you are complaining about…
[Woman, 40s, New Brighton]
Johanna Kehler
Evidence shows
that women remain
at disproportionate
risk of HIV exposure,
transmission and related
rights abuses, despite
rights protections in law
and policy. At the same
time, deeply entrenched
gender and social norms
limit women’s capacity
to make informed and
free decisions affecting
their lives, realise
rights and access and
benefit from services.
As such, the societal
context perpetuates the
status quo of women’s
restricted agency and
gender violence being
intrinsically linked
to women’s risks to
HIV and related rights
abuses.
Recognising the causes,
forms and implications of
HIV related violence against
women, the AIDS Legal Network
(ALN) – in partnership with women
and their networks – embarked
in 2012 on a project to document
and address violence and other
rights violations against women
living with HIV in Mitchell’s Plain
(Western Cape), New Brighton
(Eastern Cape), and Illovo (KwaZulu
Natal). The project was supported
by the UN Trust Fund to End
Violence Against Women (UNTF),
and implemented from January
2012 to February 2015.
As part of the end-of-project
evaluation, ALN developed a short
assessment questionnaire purposed
to ascertain women’s levels of
knowledge of HIV-related rights
abuses and avenues of redress,
as well as experiences with and
expectations of seeking redress.
The questionnaire was
administered among women
in and around clinic settings,
support groups, and at a
community level between
January and February 2015. As
with the initial data collection
phase, the questionnaires were
administered in partnership
with women from the respective
communities. A total of 1021
women from Mitchell’s Plain
(Western Cape), Illovo (KwaZulu
Natal), and New Brighton
(Eastern Cape) responded to the
questionnaire.
Women’s perceptions of rights violations
The questionnaire included a series of questions designed to
assess women’s understanding of whether certain scenarios
constitute a rights violation. The scenarios included a nurse
disclosing a woman’s HIV status without permission; the
police not taking a woman’s case seriously due to her
HIV positive status; the neighbour gossiping about and/or
insulting a woman because she is living with HIV; partner
or family members using a woman’s positive HIV status
whenever there is an argument and threatening to disclose
her HIV status; and an employer asking a woman for her
HIV status. Answer choices were ‘Yes’, ‘No’, and ‘Don’t know’.
…remain reluctant
to seek redress
based on the
perceived risk
that they may or
may not receive
the assistance
required…
Area Nurse Police Neighbour Partner/Family Employer
Y N ? Y N ? Y N ? Y N ? Y N ?
Mitchell’s Plain 85 13 2 89 8 3 91 8 1 90 8 2 59 32 9
Illovo 83 12 5 87 11 2 89 9 2 90 8 2 78 17 5
New Brighton 83 16 1 87 11 2 89 11 0 89 11 0 69 23 8
TOTAL 84 13 3 88 10 2 90 9 1 89 9 2 69 24 7
Table 1: Women’s perceptions of rights violations [%]
6 7th SA AIDS Conference • Durban • 09 – 12 June 2015
questions aimed to further assess levels of knowledge about
redress mechanisms, as well as levels of ‘trust’ among women
that they would receive adequate services.
…I don’t know what is going to happen…because you
know you’re living with HIV…and people react different to
us, treat us different in some cases…
[Woman, 30s, Mitchell’s Plain]
…I am very opinionated and I will tell people about my
rights all day…but I will not go to the police and such…it
takes too much time…
[Woman, 50s, Mitchell’s Plain]
The questions asked whether women felt they knew where to
report the rights violations presented in scenarios, whether
they felt comfortable to do so, and whether they believed
that seeking redress would result in them getting the help
they needed. Answer choices for each question were ‘Yes’, ‘No’,’
and ‘Don’t know’.
The data indicate that women
are not only knowledgeable and
aware of redress mechanisms
available, but also prepared to
seek redress as and when their
rights have been violated. The
vast majority of women (84%)
who affirmed that they would
feel comfortable to report rights
violations indicated that they
would seek ‘formal’ redress,
referring mainly to the police,
clinic, social workers, court and
legal services, as well as civil
society organisations as forms
of redress. Responses also show
that some women, despite
Overall, the data indicate that
women have a clear understanding
of what constitutes HIV-related
rights abuses at a community level,
within relationships and families,
and within institutional settings
(e.g., healthcare, police, and
employment).
The data, however, also show that
women are more likely to identify
rights violations when perpetrated
by neighbours, such as gossiping
and insults (i.e., name calling), and
partners/family members, such as
using a woman’s HIV positive status
during arguments and threatening
to disclose her status, (90% and
89%, respectively), as compared to
rights abuses within institutional
and employment settings (84, 88%
and 69% respectively).
…even if they [partner/family]
know, they have no right to
reveal it…it’s none of their
business…
[Woman, 40s, New Brighton]
…the neighbour is not
supposed to say anything
about that…you need to live in
safer places…
[Woman, 50s, New Brighton]
Responses suggest that women
are less likely to perceive unlawful
HIV status disclosure by a nurse
(84%), or an employer asking for
a woman’s HIV status as rights
violations (69%), whilst more
women (88%) agree that the police
not providing adequate services
for women living with HIV would
constitute a rights violation.
…I am here and need help
and they’re [police] supposed
to help me…and no one can
violate my rights…
[Woman, 40s, New Brighton]
Further, the data suggest some
degree of ‘acceptance’ that
healthcare providers will unlawfully
disclose women’s HIV status, and
misconception that employers
have the ‘right’ to enquire about
women’s HIV status. Women
qualifying their responses in the
context of employment made
reference to ‘he has to know’, ‘he has
the right to know’, ‘we have to tell
the bosses’, and ‘it depends on the
company’, ‘it depends on the job’.
…I don’t think it’s against my
rights…because he [employer]
needs to know my status to
secure me as an employee …
[Woman, 20s, New Brighton]
Women’s perceptions of
access to redress
…you can go and report all you
want, but they will not help…
[Woman, 20s, New Brighton]
The questionnaire also included
a number of questions designed
to ascertain whether, where, and
with what kind of expectations
women would seek redress. These
Area Report ‘comfortable’ ‘getting help’
Y N ? Y N ? Y N ?
Mitchell’s Plain 88 9 2 80 15 5 71 8 21
Illovo 91 7 2 86 11 3 77 10 14
New Brighton 95 4 1 88 8 4 75 7 18
TOTAL 92 7 2 85 11 4 74 9 17
Table 2: Women’s perceptions of seeking redress and expectations [%]
…lack of trust
among women to
feel ‘comfortable’
and ‘safe’ whilst
accessing
redress…
7th SA AIDS Conference • Durban • 09- 12 June 2015 7
the willingness to report rights
violations, ‘do not know’ where
to report (12%), or would seek
‘informal’ redress by talking to
‘partners’, ‘family members’ or
‘someone they trust’ (4%).
…first I will report it to ALN,
because they helped me in the
past and I think they will help
me again…
[Woman, 50s, Mitchell’s Plain]
…I would feel more
comfortable with the social
worker, because they are more
trustworthy and qualified for
the job…
[Woman, 20s, New Brighton]
Similarly, the data point to high
levels of ‘trust’ among women in
seeking redress and receiving
adequate responses – although
levels varied between the areas,
with women in Mitchell’s Plain
demonstrating the least belief that
seeking redress would yield an
adequate response.
Women who indicated that they
would not feel ‘comfortable’ seeking
redress for HIV-related rights abuses
(11%), stated ‘do not trust’, ‘people will
judge me’, ‘they’ll laugh at me’, ‘don’t
want people to know my HIV status’ and
‘they won’t take me serious’ as reasons
for their response.
…they’re going to shout and
ask all kinds of silly questions…
[Woman, 20s, New Brighton]
…the police don’t always take
HIV stuff serious and won’t do
anything about it…
[Woman, 40s, Mitchell’s Plain]
…because even those people
that I will be reporting to will
know my HIV status…and will
also treat me bad…
[Woman, 30s, Illovo]
At the same time, a fairly high
percentage of women willing
to report (17%) said they ‘don’t
know’ if they would receive the
help needed; many of whom
qualifying their responses ‘that
it depends on who is taking the
case’. This suggests that while
women may trust individual
service providers to assist, this
does not translate into ‘trust’ at an
institutional level. Hence, women
may overall remain reluctant
to seek redress based on the
perceived risk that they may or
may not receive the assistance
required, as well as the time and
resources it takes to both report
and follow-up on the progress of
a case.
…maybe…it depends on who
is in charge, handling the case
and which mood the person
is in…
[Woman, 30s, Mitchell’s Plain]
…depends on who helps you…
some will listen and some make
it a joke…
[Woman, 50s, Illovo]
…these days you must
know someone from
somewhere
to get real help…
it will depend of what
kind of person helps me…
[Woman, 20s, New Brighton]
Women convinced that they would not receive an adequate
response when seeking redress further explained that ‘they
won’t take it seriously’, ‘they will take their time’, ‘they will blame
us’, and ‘they will ignore you’.
…no, I don’t believe I will get help, because everybody will
think or believe that you deserve it, because you are
HIV positive…
[Woman, 20s, Illovo]
…the police…I am not sure…sometimes the police
take their time and they don’t take it seriously…and
sometimes they have attitude with us…I think the best
thing to do is to report to the ALN helpline, because
they understand this issue…we as women keep quiet
sometimes when we get threatened…
[Woman, 30s, New Brighton]
…well, I know in the community if people go to the police
and try to report one of these incidences like gossiping or
whatever, the police tell them ‘go resolve it alone’…I’ve
never seen someone come back and say yes, we opened a
case, they will follow through and everything…
[Woman, 40s, Mitchell’s Plain]
8 7th SA AIDS Conference • Durban • 09 – 12 June 2015
seeking redress mentioned that they ‘did get the help needed’,
‘perpetrator was arrested’, ‘got a protection order’, ‘the court
helped me’, and ‘police took me serious’.
…the perpetrator got what he deserved and the service at
the police station was good…
[Woman, 30s, Mitchell’s Plain]
…I went to the police to report the people who were
calling me by names and gossiped, shouted at me because
of my HIV status…and the police treated me
with respect…
[Woman, 20s, Illovo]
…I go to the police and I tell them that I’m HIV positive
and that there are always people discriminating and they
opened a case…now I am ok with my neighbours…
[Woman, 40s, New Brighton]
Further elaborating on their negative experiences, women
made reference to ‘they blamed me’, ‘needed to disclose to
people I didn’t know’, ‘they didn’t help me’, and ‘they didn’t take
me serious’.
…I reported to SAPS the abuse of my rights as a woman
living with HIV and was asked ‘are you not HIV positive’?…
which I think was not an appropriate question…it made
me feel angry and humiliated…I felt, as a woman, like
they don’t take me serious…
[Woman, 40s, New Brighton]
…deter women whose
rights have been violated
from accessing redress
and justice…
Responses further highlight that
far more women indicate that
they would feel ‘comfortable’
seeking redress (85%), than
women believing that they would
receive the necessary help when
reporting HIV-related rights abuses
(74%). This suggests that women
clearly differentiate between
‘seeking’ redress and ‘receiving’
redress, and that women’s levels
of preparedness to ‘seek’ redress,
outweighs the fact that they do not
necessarily ‘trust’ that they would
receive adequate recourse.
…it’s not right…because if you
go to make a case and you are
HIV positive, they make you
wish you weren’t…
[Woman, 30s, New Brighton]
Women’s experiences of
seeking redress
…I’ve gone to the police, because
someone was talking about my
status…when I get back to the
clinic, my supervisor told me
there was no need to go to the
police, because it was an internal
matter…I felt very bad…
[Woman, 40s, New Brighton]
The final part of the questionnaire
explored women’s lived
experiences of seeking redress. As
such, women were asked whether
or not they personally ever
reported a rights violation, and if
so, what their experiences have
been (on a 5-point rating scale
ranging from ‘very good’ to
‘very bad’).
Notwithstanding high levels of
knowledge of HIV-related violence
and redress mechanisms, as well as
the willingness to access redress,
only 18% of women participating
affirmed that they have reported
an incident of HIV-related rights
abuse. This, arguably suggests
a fair degree of disconnect
between the ‘theory’ of capacity
and skills to identify and respond
to rights abuses and the ‘practice’
of reporting rights violations and
seeking redress.
Women’s accounts of seeking
redress reflect to an extent
women’s perceptions of risks
associated with accessing redress,
most notably in the context of
‘individual’ versus ‘institutional’ trust
that seeking redress will result in
justice for women living with HIV.
…whenever someone I tell
something in confidence goes
and tells the people, I go to the
police and they help me resolve
this a lot…some of them are
very good to us, but there are a
few who are bad…
[Woman, 30s, New Brighton]
It is within this context that
women’s experiences of seeking
redress equally varies from ‘very
good’ (31%) to ‘very bad’ (25%).
Women who indicated that they
had positive experiences with
7th SA AIDS Conference • Durban • 09 • 12 June 2015 9
…I just felt that I am the guilty
one…I felt very bad when I
reported…
[Woman, 50s, Mitchell’s Plain]
…I did not get any help…I
went to the clinics and they just
refused to assist me…
[Woman, 40s, Illovo]
Conclusion and way forward
The data show that women have
high levels of knowledge, capacity
and skills to not only identify
HIV-related violence and other
rights abuses, but also respond
to these violations as and when
they occur. However, women’s
perceptions and expectations of
seeking and receiving adequate
redress in a safe environment also
point to a lack of trust among
women that available redress is
truly accessible and beneficial to
women’s realities and needs.
The data further underscore that
enhanced levels of knowledge
of HIV-related rights violations
and available avenues for redress
and justice do not necessarily
translate into greater access to and
utilisation of such avenues. As such,
the lack of trust among women to
feel ‘comfortable’ and ‘safe’ whilst
accessing redress, and/or to receive
the assistance required, would
seem to continue to deter women
whose rights have been violated
from accessing redress and justice.
Although this assessment has
arguably proven enhanced levels
of knowledge and understanding
of the various forms of HIV-related
violence and other rights abuses
against women – as set out in the
beginning of the project – the
findings also highlight persistent
challenges. These range from the
need to enhance service providers’
capacity and skills to respond to
women’s realities and needs; to
ensuring that available redress
mechanisms are accessible to
women in a safe and supportive
environment; to changing the
societal context perpetuating
rights abuses against women
in the context of and the
response to HIV.
Moving forward, it is crucial
to facilitate more ‘safe’ spaces
for meaningful engagement
between women, their
communities, policy makers
and implementers so as
to collectively ensure
women’s access to and
rights protections within
service provision. Moreover,
it remains essential to
ensure that processes and actions calling for non-violence
and women’s rights protections are not only based on and
informed by women’s experiences, but also led and defined
by women in the community. Finally, the much needed shift
in deeply entrenched social norms, attitudes and prejudices
that among other manifest and maintain women’s risks to HIV
and related violence seems to be as pertinent as it is urgent
– so as to ensure that women are in the position to claim
agency, realise rights, and access and benefit from available
services, including redress mechanisms.
Johanna is with the AIDS Legal Network (ALN), South Africa. For
more information: jkaln@mweb.co.za.
…crucial to facilitate
more ‘safe’ spaces
for meaningful
engagement
between women,
their communities,
policy makers and
implementers…
10 7th SA AIDS Conference • Durban • 09 – 12 June 2015
Governmentally, we recognise this
right and its implementation
among all provinces of the nation.
However, the right to access healthcare
comes with its own successes and
challenges, both those institutionally
and domestically put in place.
Observations and eyewitness testimony,
as well as interviews among professional
healthcare providers, can reveal some
of the largest barriers facing the public
when it comes to receiving healthcare
and claiming the right of access to
healthcare.
Getting to the clinic…
The ability to locate a judgment-free
clinic can be a huge undertaking
for the general public, especially for
someone who is HIV positive. Due to
the community social stigma against
people living with HIV, a person may
walk or otherwise travel hours in order
to avoid sitting side-by-side with other
community members at their local
healthcare facility. The chances of being
seen by a family member, a relative,
or other family friend pushes patients
away from the convenience of a familiar
clinic. One might beg the question, if the
patient is in a public waiting area, then
how are they in danger of being labelled
HIV positive, when there is no visible
separation? However, it is relatively
common that clinics or day hospitals
offer HIV counselling and medical
examination in a separate wing, hallway,
or consultation room. Because of this
practice, confidentiality is completely
broken for the patient living with HIV.
Women’s realities…
Successes and tribulations…
Community access to healthcare1
According to Section 27 of the South African Constitution
…everyone has the right to have access to health care services, including reproductive
health care…2
Alyssa Beck
…to locate a
judgment-free clinic can
be a huge undertaking…
7th SA AIDS Conference • Durban • 09 – 12 June 2015 11
One can easily tell the ‘status’ of a person
by the area of the healthcare facility
that they wait in or by the name of the
doctor or counsellor they see. Therefore,
between the possibility of risking
outing their HIV status or the choice of
travelling to a further destination for
healthcare, the latter usually wins.
Since the decision is often made to
reach beyond community boundaries
for assistance, a new series of challenges
may arise. One may need to miss a day
or two worth of work, resulting in a
loss of income, thus a loss of potential
expenditure on food, family necessities,
school fees, or other daily costs of life.
Added to this, the money spent on
transportation can be excessive, such as
the taxi fare spent for a round trip to get
to and from the clinic.
While at the clinic…
According to the physicians interviewed
and their opinions on access to
healthcare whilst working in a mixed
township clinic, waiting times are the
single largest barrier facing individuals
seeking treatment. Since appointments
are scheduled based upon which day
the patient should return and not the
time nor the hour, it creates a first-come
first-serve basis of admittance. From the
hour that the clinic opens, the waiting
room overfills with people. Mothers,
grandparents, young children, working
fathers, the homeless, and all the like
can be seen crowding the waiting area
from as early as eight o’clock in the
morning. They are told that the earlier
they come, the better. However, it is
the triage unit that makes this decision.
If one is not in need of urgent medical
treatment, the wait can last for up to
five or six hours before a doctor is seen.
One patient interviewed described their
arrival at the clinic at 9:30 in the morning
and failure to see their physician until
2:30 in the afternoon. For those in need
of transference to another hospital,
hours can pass before ambulances or
other emergency assistance arrives.
Because of this, workers daily offer
bagged sandwiches to those waiting in
the lobby for the lunchtime hours. The
wait extends itself even longer when
the patient is told to seek pharmacy
to receive their prescriptions after
the consultation.
The afternoon then houses all of
the pharmacy-seekers and the
clinic witnesses the same issues of
overcrowding as the morning saw.
The waves of people follow the same
pattern, from triage to doctor to
pharmacy, thus there is never a balance
or organisational flow. The masses all
move as one and so do the excruciating
waiting times, frustration, and pressure
mounting on the doctors to see as
many patients as they can (this number
reaching from thirty to forty in one
day). There are little or no breaks given
for rest and none provided in the space
between patient appointments for
doctors. Added to chronic understaffing,
exhaustion and a lesser quality of care
are endorsed. Patients, in turn, must
frequently leave only to return the
following day for their medications,
since the waiting times were too much
to bear, lowering the overall productivity
of the workday. Even then, one may
not be given all of the medication that
was prescribed.
Confidentiality is most likely the second
largest issue among clinics with regards
…exhaustion and a lesser
quality of care are endorsed…
…posing threats to accessing
a good standard of care…
to a legal standard of healthcare.
Folders can be labelled with personal
information outwardly visible and are
effortlessly tossed between patients and
staff without discretion. It is also likely
that the doctor may leave a computer
screen up on their desktop with patient
history and lab results for their next
consults. The loss of confidentiality can
also be seen in the inner workings of the
clinic through consistent interruptions
during consultations by other patients
and staff. Discussions of health history
in front of other patients and sisters,
including topics such as CD4 counts
and HIV diagnoses, can be heard. If it
is the case that a sister or nurse cannot
perform a procedure on their own or are
having difficulty with a patient, consults
can be walked in on and halted as the
doctor is called away to attend to the
matter, leaving the patient alone and
delaying their care.
We also see issues with technology and
modern day techniques posing threats to
accessing a good standard of care. Day
hospitals are huge organisations, and
those that have access to technology
are able to enter patient information
on an online database that reaches
across provincial borders. Doctors can
access their patients history and lab
results from other clinics should they
be from the Eastern Cape or beyond.
However, if the computer systems are
down or the electricity fails, which
does happen, the physician is unable to
access this crucial information for their
patient’s consult. These systems usually
run slowly otherwise. Other medical
equipment, such as X-ray backlights,
can also lose functionality in this
respect, and the ability for a physician to
diagnose is inhibited. X-rays themselves
can be blurry or of poor quality, due
to the lack of financial resources for
proper machinery.
This lack of access to technology as
compared to western medicine can
be seen as a huge hindrance to the
timeliness of appointments. The doctor
must rely on the previous medical
provider’s notes, which are difficult to
read and messily written among papers,
to gather patient history. A large portion
of the consult is spent pasting patient
ID’s to registers and updating written
information. While doctors face many
of these challenges, nurses also play
a large role in how patients receive
their healthcare. Since many nurses are
practicing during their education and
immediately after graduation, many can
be inexperienced with proper care and
medical procedures. Often, it is unlikely
to have IVs inserted correctly on the
first or second try, causing unnecessary
patient discomfort. There have been
instances of ECGs being executed
incorrectly, which forces the patient
to undergo the same procedure twice,
due to the nurse’s error. The print outs
and paper copies from these machines
are easy to lose or tear, since such
information is not stored electronically.
This lack of medical technology and
other supplies for the nurses and staff
means that the reuse of materials is
compulsory. Thermometers and ECG
equipment are merely wiped down or
rinsed with water before being used
on the next patient, which raises the
concern of the spread of bacterial
infection. Gloves, if they are used, often
are not sterile. Also, medical apparatus
such as CT scans or certain blood tests
as well as materials, such as fiberglass
for casts, are not available to patients
at most clinics and require referrals to
…morality and religious
beliefs interfere with the
objectiveness of healthcare…
…the emotional toll of being
denied care or the judgment
imposed can discourage
patient return…
12 7th SA AIDS Conference • Durban • 09 – 12 June 2015
larger units which may be a far distance
from the patient’s home or accessibility.
Sometimes, the equipment that a
clinic does have can be stolen, lost, or
otherwise misappropriated.
The question in totality must be
raised, of what is the standard of
healthcare with which we are using
to measure these failures? Is it that
of North America, Europe, or another
international location? Or is it that of
the constitution and the basic rights by
each human seeking treatment? Issues
of confidentiality, sterility of equipment
and facilities, and other procedural
dealings heavily depend upon this
definition.
Returning to the clinic…
Clinics that are in denser rural settings
may not employ permanent doctors
and can be entirely run by sisters, which
often do not carry medical degrees,
but nursing ones. One or two of the
sisters may have their nurse practitioner
certifications, but usually only one is
issued per site. These sisters will run
triage for the clinic and determine if
the patient can be seen by the clinic
or needs to be referred or denied care.
Visiting doctors rotate in and out, but
the sisters complete the majority of
facility upkeep. Issues can arise with
corruption here when morality and
religious beliefs interfere with the
objectiveness of healthcare. In the
doctor’s words, ‘the patient is always right
even when they are wrong’.
The own attitude of a sister or doctor
can push or chase a patient away,
which has been seen in peripheral
clinics that lack management and staff
guidance. Whether or not termination
of pregnancy, for instance, is acceptable
to the sister can determine if the patient
can receive the procedure or will be
forced to find care elsewhere. The
emotional toll of being denied care or
the judgment imposed can discourage
patient return. Nurses may also exhibit
behaviour that inhibits the right of
access to healthcare for the patient,
such as sleeping, using cellular devices
during work hours, or taking longer
or more frequent tea times or breaks
than allotted.
The fear of rejection from these
untrained or unprofessional nurses
and staff can drive away patients even
further. Legally, women from the age
of twelve to sixteen are entitled to
receive family planning without adult
or parental consent. However, when
morals mix with healthcare, many cases
have been reported of sisters refusing
to supply birth control to these women,
…behaviour that inhibits
the right of access to
healthcare…
7th SA AIDS Conference • Durban • 09 – 12 June 2015 13
using the excuses that they are ‘too
young’ or they ‘know their mother would
be displeased’. Patients bear the load of
this criticism.
Organisationally, issues arise when
patients decide to not return and
default their appointments. This
generates issues for doctors when
the person may show up later in time
or not according to their scheduled
appointment date. It could be too
early or too late in the week or month,
which means that their treatment is of
a reduced quality or use to the person
himself or herself. Bookings themselves
take six weeks to be made and walk-ins
are not usually allowed. During these
decisions, it is important to recognise
that it is an amenity to be seen by the
same doctor for more than one visit,
since the staff rotates and the patient
does not have the entitlement to be
seen by the same provider unless upon
request. Thus, the continuity of care is
disturbed and efficacy weakens, while
patient-to-provider trust declines. The
general likelihood of a patient returning
diminishes.
Successes of the public
healthcare system…
As compared with the healthcare
systems of other worldwide countries,
such as the United States, the ability of
South African provincial clinics to offer
completely free access and care to the
public is quite unique. There are few
instances in the U.S. in which one is able
to access healthcare without insurance
or added out-of-pocket costs.
The internationally recognised
institution by the name of Planned
Parenthood can offer this due
to healthcare cost-reimbursement
programmes created by state governors
for those without employer coverage
and unqualified for Medicaid. In these
rare circumstances, which depend
upon the nature of the organisation
providing the care, it is possible to be
treated without charge if one is not
supported by the government already.
However, in the context of South
Africa, the ability to find free healthcare
institutions is abundant. This means that
concern is highly recognised for families
and individuals with low income and
resources.
In addition to the ability to access
free healthcare, or that funded by the
government, patients are also able
to access other departments, such
as psychological and mental health
assistance, social work, and HIV/sexual
health counselling in the same facility.
Before a visitor sees their primary care
physician, they are able to have sessions
with HIV counsellors on staff. Topics
of discussion can range from family
…patients bear the load of
this criticism…
14 7th SA AIDS Conference • Durban • 09 – 12 June 2015
planning to termination of pregnancy
to HIV testing and emotional support
services. Free condoms, although mostly
male condoms, are available upon
request, and are often times in plain
sight for whomever so chooses to take.
Employed by the clinic are sets of
special workers titled ‘Community Health
Workers’, who play an important role in
the return rate of patients. If a person
misses their appointment, or ‘defaults’
too many times, and their health is in
turn put in jeopardy, the community
health workers are allowed to seek these
patients out at their homes. The goal
is not to scare the person and scold or
reproach their actions, but rather to
encourage them to continue treatment
for themselves. This is especially
important in the case of patients living
with HIV, who may run out of ARV
medication from month to month. This
type of patient advocating and support
is difficult to find in the United States
on behalf of limited time and the use of
technology in place of person-to-person
communication.
Concluding remarks…
Thus, these successes should not be
overshadowed by the tribulations seen
in the public healthcare system today.
Nevertheless, much work and progress
needs to be made in the arena of public
clinical healthcare throughout the
country.
Confidentiality, sterility, clinic organisation,
staff treatment and oversight, and other
topics of discussion all play a holistic
role in the way in which a person views
their personal access to healthcare. One
must consider the government’s funding,
the educational system of healthcare
providers, clinic administration practices,
and even personal choices to promote
and seek future change in the way our
country treats its people.
A clean, fair, and timely access to
healthcare without discrimination based
on race, age, sex, or personal preference
is a human right we have yet to fully
acknowledge, but still yet should fully
strive toward.
FOOTNOTES
1. This article is based on observations,
eyewitness testimony and interviews in
a day hospital in Khayelitsha, Western
Cape in July 2014.
2. Constitution of South Africa, Act 108
of 1996.
Alyssa is a graduate from the University of
Wisconsin. For information:
beck.alyssa@gmail.com.
…successes should not
be overshadowed by the
tribulations…
…the continuity of care is
disturbed…imposed can
7th SA AIDS Conference • Durban • 09 – 12 June 2015 15
16 7th SA AIDS Conference • Durban • 09 – 12 June 2015
On the margins…
Redefining who is ‘Key’…
Women who have sex with women and HIV
Definitions of key populations in
the HIV response are often vague,
broad and inconsistent. Each country
seems to have its own unique list,
as does each funding partner,
and indeed each conversation.
When I say ‘key populations’ you
may think I mean men who have
sex with men, injecting drug users
and sex workers when in fact I
mean truck drivers, fisher folk and
herd boys.1 Not to mention the
absurdity of conceptualising these
as distinct categories to begin with.
Intersectionality is critically important,
yet almost always ignored..
Despite this confusion, there does appear to be
some clarity on who are not ‘key populations’
– women who have sex with women (WSW).
Though sometimes included under the ‘LGBTI’ umbrella,
on their own, women who have sex with women are rarely
considered ‘key’. But what does the evidence really say?
Three oral papers on women who have sex with women
are on the programme for the 7th South African AIDS
Conference in June 2015, each bearing a familiar
message: Women who have sex with women in South
Africa are vulnerable to HIV, and nobody is paying
attention.
The first paper is a critical review of recent WSW research
in South Africa (‘South Africa’s Invisibles: HIV Risk and
Vulnerability among Women Who Have Sex with Women’).
Based on a meta-analysis, HIV prevalence among women
who have sex with women were found to be 10.6%, just
marginally less than the general population (12.2%).2
However, among adolescents in Soweto, one study
found that women who have sex with women are five
times more likely to be HIV positive (10.3%), than their
heterosexual peers (2.3%).3
Forced sex was also an important risk factor, with one
study finding that 45% of HIV positive women who
have sex with women had been raped4, and another
concluding that forced sex was the single most
important factor for sero-conversion among women
who have sex with women.5
The second paper, which will be presented in the same
session (‘Sexing in the Cities: Sexual risks, prevention
knowledge and practices of women who have sex with
women in South African townships’), shares doctoral
Gemma Oberth, Phoebe Mbasalaki
research on sexual practices and risk behaviours among
women who have sex with women in South Africa. Based
on a survey of 205 women, 38.6% stated they had had
sex during menstruation. Further,
although 62.3% of women had HIV
prevention knowledge, only 10.4%
used that knowledge to protect
themselves during sex. This finding
may be related to risk perception. In
addition, the critical review further
highlights one study which found
that 39% of women who have sex
with women reported not testing
for HIV, because they do not believe
they are at risk.6
The third paper (‘Claiming the right
to health for women who have sex
with women: Analysing South Africa’s
National Strategic Plans on HIV and
STIs’) discusses the importance
of recognising HIV vulnerability
of women who have sex with
women in national strategic
planning. Erasure from policy and
programming means women who
have sex with women are facing a
serious HIV risk, without access to
adequate information or services.
So while acknowledging
the inherent problems with
defining ‘key populations’, these
definitions are very important.
They determine funding priorities, guide policy and
inform programming. Despite some very robust data,
it has been documented that women who have sex
with women and HIV research is often received with
disproportionate skepticism or even downright rejection
at international HIV conferences.7 When will evidence
speak louder than prejudice? It is time we redefine who
is ‘key’.
FOOTNOTES:
1. Fisher folk are defined as key populations in Uganda,
referring to those who work in the Great Lakes Region.
Herd boys are defined as key populations in Lesotho,
referring to those who work on the mountains herding
cattle.
2. Shisana, O. et al. 2014. South African National HIV
Prevalence, Incidence and Behaviour Survey, 2012. Cape
Town, HSRC Press.
3. Miller, C. L. et al. 2013. ‘Implications for HIV
prevention: Lesbian, gay and bisexual adolescents in
urban South Africa are at increased risk of living with
HIV’. In: The Pediatric Infectious Disease Journal, 32(6),
ppe263-e264.
4. Cloete, A., Sanger, N., & Simbayi, L. C. 2011. ‘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, 3(1),
pp1-5.
5. Sandfort, T. G. et al. 2013. ‘Forced sexual experiences
as risk factor for self-reported HIV infection among
southern African lesbian and bisexual women’. In: PloS
One, 8(1), pe53552.
6. Cloete, A., Sanger, N., & Simbayi, L. C. 2011. ‘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, 3(1),
pp1-5.
7. Logie, C. H. 2014. (Where) do queer women belong?
Theorizing intersectional and compulsory heterosexism
in HIV research. Critical Public Health, (ahead-of-print),
pp1-12.
Gemma is a Post-doctoral Visiting Research Scholar at
the Centre for Social Science Research at the University of
Cape Town in South Africa, and Phoebe is a PhD candidate
at Utrecht University in the Netherlands. For more
information: gemma.oberth@gmail.com;
P.K.Mbasalaki@uu.nl.
…the absurdity of
conceptualising
these as distinct
categories…
…disproportionate
skepticism or even
downright rejection
at international
HIV conferences…
7th SA AIDS Conference • Durban • 09 – 12 June 2015 17
18 7th SA AIDS Conference • Durban • 09 – 12 June 2015
Wednesday, 10 June 2015 • 11h30 – 13h00, Hall 4
DR GEMMA OBERTH • South Africa’s Invisibles: HIV Risk and Vulnerability among Women Who Have Sex
with Women
MS PHOEBE MBASALAKI • Sexing in the Cities’: Sexual risks, prevention knowledge and practices of
women who have sex with women in South African townships
Thursday, 11 June 2015 11h30 – 13h00, Hall 3
DR FELICITY DALY • Claiming the right to health for women who have sex with women: Analysing South Africa’s
National Strategic Plans on HIV and STIs
Key Events on women who have sex with women and
HIV at the 7th SA AIDS Conference
In 1994, apartheid was
legally abolished and South
Africa had officially survived
almost 50 years of apartheid
rule. People like Nelson
Mandela and Robert Sobukwe
are considered heroes for
dedicating their lives to such
a noble cause; with statues
and monuments erected
in their honour. They (and
many others) spent decades
behind bars so that their
fellow black South Africans
could enjoy the benefits of
a democratic, egalitarian
society where everyone would
be treated equally and with
respect, irrespective of the
colour of their skin. Because
of their work, we now live in
a country where ‘Blacks’ and
‘Whites’ can enter the same
establishments, walk hand
in hand, and be a part of the
same communities.
Despite the radical change
we have seen since the
apartheid era, we are
still living with an unbelievable
level of stigma, discrimination,
and segregation. Today, South
Africa has the largest HIV
epidemic in the world with
approximately 17.9% of adults
living with HIV (2012)1. And
although the number of people
living with HIV is so high, people
who have received a positive
HIV diagnosis continue to be
isolated, ridiculed, and abused
for their positive HIV status.
This reality raises a number of
question, including how is it
possible that a country where the
marginalisation of an entire race
of people was a very tangible
reality only a mere twenty years
ago, can continue to do the exact
same thing to a group of people
based on something as superficial
as a medical diagnoses? How
is the stigmatisation of HIV
and people living with HIV
any different than the Western
ideologies and institutionalised
racism that was present during
apartheid rule?
While it is apparent that there are numerous entities, such
as NGOs, government departments, and international and
domestic donors, who are socially and financially invested
in finding effective treatment and a cure for AIDS2, the
majority of efforts have been from a Western perspective. As
Nuttall (2004) writes,
…Histories will always be laced with structures of racism
and violence because it’s a part of the culture. The only
way to write and narrate to the future will be through an in
depth examination of these constructs.3
Special report:
The power of storytelling in
addressing HIV-related stigma
Simone Thomas
7th SA AIDS Conference • Durban • 09 – 12 June 2015 19
20 7th SA AIDS Conference • Durban • 09 – 12 June 2015
Rather than focusing on ‘key
populations’, which as much
‘teaches’ people to marginalise
and stigmatise these groups, as it
‘justifies’ it, this paper attempts
to connect themes used in precolonial
South African oral
traditions with issues in the
current HIV epidemic as a way to
mitigate the stigma associated with
a positive HIV diagnosis.
HIV prevention: The
disconnects with women’s
realities
Ever since research scientists in
South Africa have begun studying
how culture affects the exposure
and transmission of HIV, they
have largely ignored the orality of
the culture. Instead, the existing
documentation largely represents a
view that Tyler (1991) describes as
…discredits or discourages
narrative, subjectivity,
confessional, personal
anecdote, or accounts of the
ethnographer’s or anyone else’s
experience.4
A well-documented example
of this disregard for especially
women’s lived experiences is the
highly publicised ABC (Abstain,
Be Faithful, Condomise)
campaign5 meant to reduce the
‘spread of HIV’. This prevention
message fails to take into account
the perspective of South African
women; the very people the
campaign is meant to protect.
How, when there is such a high
rate of gender violence, is a
woman supposed to ‘abstain’
from sex when a lot of times the
decision whether or not and how
to engage in sex is not hers in the
first place?6
In addition, many HIV
prevention intervention
programmes in the past have
followed the Knowledge-Attitude-
Practice approach7, whereby it
is the understanding that if a
‘target group’ is provided with
sufficient information, they will
subsequently approach each
situation with an attitude that
reflects the information they
have received, and as such, put
these attitudes into practice. Unfortunately, this will not
always be the case, especially in an environment where
there are a multitude of factors that contribute to the way a
person behaves. A study by Campbell (1997) regarding the
psycho-social aspects of HIV exposure and transmission
in the South African gold mines shows that even people
with high levels of knowledge about HIV still continue to
engage in ‘high risk sexual behaviours’8; thus questioning
the theory that access to information will lead to behaviour
change. This paradigm is further established during a peer
group discussion in rural KwaZulu Natal with a group of
young women between the ages of 16-19. This peer group
discussion was facilitated by Harrison (2001) and depicts the
perceived risks that young women face and the disconnect
between these perceptions and actions they are willing to
take to mitigate those risks:9
I: As you’re growing up, do you see yourselves at risk of
pregnancy, STDs and HIV/AIDS?
N: Yes.
I: Which are the ones that you see yourselves most at
risk of?
N: Death. (laughter)
I: From the ones that I mentioned, which ones?
N: HIV/AIDS.
P: Pregnancy.
Pr: All of them.
I: What are you doing then to avoid these risks you have
mentioned?
P: I’m doing nothing.10
It should be noted that this study took place in the
Hlabisa District of KwaZulu Natal where the average annual
income is R9000 and the majority of people (and especially
women) are living well below the poverty line and may
not know where their next meal is coming from.11 It is in
conditions like these where
…storytelling has
been long known
as an African form
of socialisation
that bridges the
perspectives of young
and old…
…many women engage in
transactional sex in order to
survive and in order to support
both themselves and their
family.12
All of this seems to indicate
that when we are providing people
with information there has to be a
higher degree of sensitivity to their
realities and personal histories,
so as to ensure that interventions
are indeed responsive to peoples’
realities and needs. If we wish to
reduce both the HIV transmission
rate and the stigma associated with
it, we must make the assumption
that ‘social identities play a key
role in shaping people’s sexual
behaviour’13 and then put real
efforts into understanding these
social realities and identities from
the perspective of the individual.
Storytelling: Concepts and
potentials
Oral history, at the heart of it
all, is a dialogue between two or
more people about some aspect of
the past.14 It gives a human face to
history and creates an importance
surrounding the individual
experience that is normally seen
as quite ordinary.15 Oral history
can also be seen as storytelling or
folklore where historical accounts
with traditional themes, lessons,
and rituals are passed down
from generation to generation.
According to the Sinomlando
Centre for Oral History and
Memory Work at the University
of KwaZulu-Natal, storytelling
has been long known as an
African form of socialisation that
bridges the perspectives of young
and old.16
This aspect of oral tradition is
especially important in opening
up the lines of intergenerational
communication. Through the
Understanding Safe Sex study,
Harrison (2001)17 revealed that
many of the older generations are
maintaining strong ties to their
traditions, while the young adults
are being exposed to an extremely
well-developed transport system
that easily links them to major
cities, mass media, and the
influence of ‘urban youth culture’18.
The passing down of traditions
through spoken word from one
generation to the next could
prove to be a very effective model
in bridging the communication
gap between young and old.
Regardless of what community
dialogue programmes are put in
place, the stigma surrounding sex
and HIV will continue to persist
if a person walks into their own
home and feel as though they
cannot speak about the issues that
are concerning them with their
own family.
For narratives to become an
effective method of bridging communication gaps and
addressing the stigma associated with HIV, there is some
preliminary work that needs to be done. There are some key
themes that are normally associated with oral tradition – the
discussion of sex, marriage, and HIV not being any of them.
We cannot expect that a society free of HIV-related stigmas
will be the end all and be all of revisiting the tradition
of storytelling, but merely a by-product of increased
intergenerational and cross-gender communication.
Historically, storytelling has been quite an intimate
tradition that is shared between family and community
members. There is a certain level of respect and sensitivity
that needs to be adhered to when we explore the idea of
using an old family tradition to solve a relatively modern
issue. As a form of socialisation:
One of the most enduring stereotypes in South African
oral literary studies is that of woman as storyteller.
Almost invariably a grandmother, preferably seated in the
vicinity of a fire, this figure has dominated virtually all
local research into oral narrative.19
This age old image places a woman at the centre, as
the matriarch if you will, if even just for a moment. This
is an influential role to play, but
unfortunately is one that gets lost
in South Africa’s patriarchal nature
and as such, deprives the younger
generation a chance to see everyday
women holding a position of
power. A large obstacle in the way
of mitigating HIV related stigma
is the gender norms that are so
heavily integrated in society. These
norms dictate that women should
speak only when spoken to, be
‘docile creatures’, and that women
are inherently ‘inferior’ to men.
‘Ukuhlonipha’ is a common theme
in oral history a core aspect of Zulu
…oral tradition
is especially
important in
opening up
the lines of
intergenerational
communication…
7th SA AIDS Conference • Durban • 09 – 12 June 2015 21
22 7th SA AIDS Conference • Durban • 09 – 12 June 2015
culture, which says that respect is
of utmost importance, especially
towards men and elders.20 At the
same time, most South African
socio-cultural contexts have
adopted the ‘ukuhlonipha code
of respect’, or a similar code of
conduct placing a high value on
‘respect’ towards some members
of society; with women being
mostly excluded. Thus, for women,
inclusion into the ‘ukuhlonipha
code of respect’ arguably equates to
inclusion into the heteronormative
and patriarchal society.
If we can use traditional
storytelling to shine a new light on
the role women play as ‘respected
members’ of the community,
we can begin to shift the
consciousness in terms of the way
women are viewed and treated,
regardless of their sex and/or
HIV status. In a societal context
in which women are the least
respected members of society and
HIV remains highly stigmatised,
women living with HIV are thus
most at risk of gender and HIV
related violence and other rights
abuses – a reality, which ‘story
telling’ has the potential to address
and transform.
‘Rites of passage’ in the
context of women and HIV
Another common theme in oral
tradition is that of the ritual; the
common denominator being the
‘communitas’ mentality. Many
traditional folktales revolve
around coming of age stories or
rites of passage. As Van Gennep
(1960) states, there are three stages
to a traditional ‘rite of passage’:
separation, liminality/communitas,
and reintegration.21 Separation
from the community happens
after a specific event that triggers
a need for the particular ritual.
The liminality and communitas
stages are terms coined by Turner
(1961), whereby participants no
longer hold the status they held
prior to the ritual beginning, but
do not yet hold the status that
they will once the ritual is over.22
Communitas refers to a community
where all people are equal and
share a common experience,
more often that not, through
these rites of passage23. Once the
period of isolation had passed,
the participant would re-enter the
community as a mature
figure, a source of wisdom and
knowledge, and as a beacon of hope.
Although these coming of age rituals were usually
associated with men and may be out-dated, learning about
them through storytelling can still provide valuable lessons,
assist in re-defining the concept and creating an all inclusive
version of the term ‘rite of passage’. The stage that should
hold the most importance in this learning lesson should be
that of reintegration into the community with a
…greater knowledge of the world, deeper consciousness,
insight and wisdom.24
Currently, in the context of women and HIV, a positive
diagnosis is seen as a direct translation to shame. There
seems to be no ‘beacon of hope’ in finding out that you are
HIV positive. The dialogue in communities makes women
who are living with HIV feel as if they are relegated to a
life in the margins. Women being exiled from their homes,
subjected to forced sterilisation, and refused employment
are just some of the examples of how women living with
HIV experience the same emotional and physical isolation
that young men did during their ‘rites of passage’. The
only difference is that the young men had the luxury of
reintegrating into society that was willing to
accept them.
Recounting personal
experiences of rites of passage
provides a basis for open
communication and a source of
commonalities between other
members of the community.
Those who have experienced
what it is like to be positively
diagnosed with HIV might
argue that they too experience
a type of ritualistic ‘rite of
passage’, however they may
experience stagnancy in the
communitas stage where they
feel a sense of equality only
…gender norms
that are so heavily
integrated in
society…
…merely a
by-product of increased
intergenerational
and cross-gender
communication…
7th SA AIDS Conference • Durban • 09 – 12 June 2015 23
between others who have also
been diagnosed. There is never
a sense of equality when they
are reintegrated into society,
but yet a constant sense of
marginalisation, stigmatisation,
and discrimination.
This paper is arguing that
it is a sense of community
and open communication that
South Africa needs in order to
overcome a history of silence and
discrimination surrounding HIV.
Farmer (2004) shows
…how conditions of chronic
poverty, gender inequality,
and everyday violence limit
the life choices of the
HIV-positive poor women [sic]
she encounters at her
HIV/AIDS clinic.25
If we can limit some of these
external factors through respect
and communication, women
will begin to experience the
power of choice – the power to
choose if they want to disclose
their status, when and with
whom in the absence of stigma
and discrimination. When
there is an overwhelming sense
of respect and Ubuntu in the
community, we will notice a
shift in the treatment of women
– not only living with HIV, but a
shift in the treatment of women
in general.
Concluding remarks…
In the same way
anthropologists immerse
themselves into a culture of
gaining a first person perspective
and better understanding of
people, we, as a society striving
for change, need respectful, open
dialogue in communities so that
partners, families, neighbours,
co-workers, and classmates,
can begin to better understand
each other. From that deeper
understanding arguably comes
a sense of respect and dignity
for all community members, as a
community saturated with respect
leaves no room for discrimination
and stigmatisation.
Using storytelling and oral
tradition is only one way that we
can come about this result. At the
end of the day, it does not matter
how we reach the conclusion of
communication and respect. What
does matter is that we make it
our mission to reach a point of
understanding, acceptance, and
an overall ‘I am because we are’
mentality. A mentality, which
among other manifests itself as
‘safe spaces’ wherever women
go, where they feel like they
can openly express themselves
on any platform, regardless of
whether they are speaking to their
mother or the sister at the clinic,
regardless of their HIV diagnosis.
FOOTNOTES:
1. HIV & AIDS in South Africa. AVERT. [www.avert.org/hivaids-
south-africa.htm]
2. Ibid.
3. Nuttall, S. 2004. ‘City forms and writing the “now” in South
Africa’. In: J South Afr Stud. 30(4), pp731-748. [doi:10.1080/03
05707042000313988]
4. Tyler, S.A. 1987. The Unspeakable: Discourse, dialogue, and
rhetoric in the postmodern world. Madison: University of
Wisconsin Press.
5. Elfenbein, R. 2005. ‘“ABC”: A gendered look at HIV
prevention’. In: ALQ, November Edition, pp10-13.
6. Ibid.
7. Overland, L. 2005. ‘The role of HIV and AIDS
communication’. In: ALQ, November Edition, pp37-39.
8. Campbell, C. 1997. ‘Migrancy, masculine identities and AIDS:
The psychosocial context of HIV transmission on the South
African gold mines’. In: Soc Sci Med, ???
9. Harrison, A., Xaba, N., & Kunene, P. 2001. ‘Understanding
safe sex: Gender narratives of HIV and pregnancy prevention
by rural South African school-going youth’. In: Reprod Health
Matters, 9(17), pp63-71. [doi:10.1016/S0968-8080(01)90009-6]
10. Ibid.
11. Ibid.
12. Elfenbein, R. 2005. ‘“ABC”: A gendered look at HIV
prevention’. In: ALQ, November Edition, pp10-13.
13. Campbell, C. 1997. ‘Migrancy, masculine identities and AIDS:
The psychosocial context of HIV transmission on the South
African gold mines’. In: Soc Sci Med, ???
14. Shopes, L. 2015. What is Oral History? Mak Sense Oral Hist.
[http://historymatters.gmu.edu/mse/oral/oral.pdf]
15. Strydom, B., Groenewald, R., & Changuion, L. 2007. ‘Out
of the Mouths of the Alumni: The University of Pretoria as
a Case Study’. In: Natl Arch Rec Serv South Africa. 6. [www.
national.archives.gov.za/rms/ARCHIVES NEWS.pdf]
16. Denis, P. 2007. ‘Oral History: An African Art?’. In: Natl Arch
Rec Serv South Africa. 1, pp39-42.
17. Harrison, A., Xaba, N., & Kunene, P. 2001. ‘Understanding
safe sex: Gender narratives of HIV and pregnancy prevention
by rural South African school-going youth’. In: Reprod Health
Matters, 9(17), pp63-71. [doi:10.1016/S0968-8080(01)90009-6]
18. Ibid.
19. Denis, P. 2007. ‘Oral History: An African Art?’. In: Natl Arch
Rec Serv South Africa. 1, pp39-42.
20. Ibid.
21. Van Gennep, A. 1960. The Rites of Passage. London: Routledge
and Kegan Paul.
22. Turner, V. 1961. Ndembu Divination: Its symbolism and
techniques. Manchester: Manchester University Press.
23. Robins, S. 2006. ‘From “Rights” to “Ritual”: AIDS Activism
in South Africa’. In: Am Anthropology, 108(2), pp312-323.
[doi:10.1525/aa.2006.108.2.312]
24. Denis, P. 2007. ‘Oral History: An African Art?’. In: Natl Arch
Rec Serv South Africa. 1, pp39-42.
25. Farmer, P. 2004.’ An Anthropology of Structural Violence’. In:
Current Anthropology 45(3), p305.
Simone is an intern at the AIDS Legal Network (ALN).
For more information: sthoma12@binghamton.edu.
24 7th SA AIDS Conference • Durban • 09 – 12 June 2015
Editor: Johanna Kehler jkehler@icon.co.za
Photography: Johanna Kehler jkehler@icon.co.za
Design: Melissa Smith melissas1@telkomsa.net
Printing: FA Print
Supported by Oxfam
www.aln.org.za www.athenanetwork.org
Women marching for change…
Women and their allies came together calling for non-violence and women’s rights protections; marching for change. These
marches took place in Mitchell’s Plain (Western Cape), New Brighton (Eastern Cape), and Illovo (KwaZulu Natal) in October and
November 2014.
It was a time for women to mobilise among themselves, to take their priorities into their own hands, to raise their voices in unity,
and to come out with urgency and agency to say: enough is enough.1
Women say ‘no more’…
We, as women are coming together to make our voices heard; to say ‘no more’!
1. See also AIDS Legal Network. 2015. Coming together to make our voices heard: Community advocacy: Building solidarity, bridging communities. [www.aln.org.za]
THE 10 DEMANDS OF WHAT WOMEN WANT:
1. We demand respect and equal treatment – everywhere and all the time!
2. We demand to be free from violence and abuse
3. We demand to be free from judgement and discrimination – in our
homes, communities and within service provision
4. We demand to be safe in our homes and our communities
5. We demand access to ‘safe’ and responsive health services – women
say: no more denial of treatment if we miss the appointment, no more
shouting, no more refusal of condoms and contraceptives, because we
are too young
6. We demand our right to privacy to be protected – women say: no more
disclosing of our HIV positive status
7. We demand integrated services – women say: no more separate queues
and coloured folders, no more exposing of women living with HIV to
judgement and rights violations
8. We demand agency and the right to make decisions – women say: no
more ‘coerced’ HIV testing, because we are pregnant or because we
want access to contraception, no more ‘telling us’ what is best for us
9. We demand access to justice and responsive police services – women
say: no more delays in police responses to domestic violence cases, no
more delays in sexual abuse and rape cases
10. We demand police protection – women say: no more judgment and
attitudes, no more arbitrary ‘stops and searches’
We, as women, demand change! We demand respect! We demand justice!
And we demand it NOW!