ourselves. their bodies?

OURSELVES.
THEIR BODIES?
Issue brief: Assessing
efforts to halt forced &
coerced sterilization of
women living with HIV
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OURSELVES. THEIR BODIES?
Issue brief: Assessing efforts to halt forced and coerced
sterilization of women living with HIV
Colophon
Edition: STOP AIDS NOW!,
July 2012
Text : Jennifer Bushee,
Tyler Crone, and Luisa Orza
Photography: Johanna Kehler
2
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Table of Content
Think Tank, Addis Ababa, 3 December 2011 ............................................................... 4
Context ...................................................................................................................... 5
The Namibian Example ............................................................................................... 6
Regional and Global Responses................................................................................... 7
Restricted Sexual and Reproductive Choices for Women Living with HIV.................... 8
Emerging Issues ........................................................................................................ 10
General Conclusions.................................................................................................. 12
Key Recommendations ............................................................................................. 13
3
Think Tank, Addis Ababa
3 December 2011
On the eve of the 2011 International Conference on AIDS
and STIs in Africa (ICASA) in Addis Ababa, STOP AIDS
NOW!, the ATHENA Network, the AIDS Legal Network, and
the Namibia Women’s Health Network convened a
collaborative Think Tank in order to map emerging trends
at the intersection of sexual and reproductive health and
rights and HIV, with a specific emphasis on the sexual and
reproductive health and rights of women living with HIV.
Our particular interest was to assess the state of the field
in relation to violations of the rights of women living with
HIV in sexual and reproductive healthcare settings. Given
the current attention to and global consensus around the
importance of integrating HIV and sexual and reproductive
health, these violations pose a serious risk to the
effectiveness of sexual and reproductive health and HIV
integration efforts.
Focusing on the forced and coerced sterilization of women
living with HIV hones attention in on some of the most
egregious violations and presents a starting point for the
deeper analysis of the range of violations women living
with HIV face when seeking sexual and reproductive
health services. Unpacking the complex of stigma, genderbased prejudices, discrimination, and human rights
violated in the context of the forced and coerced
sterilization of women living with HIV can help us better
understand the nature of and the factors behind other
violations of the sexual and reproductive health and rights
in healthcare settings. Research and documentation to
date suggest that, given the severity of the violation and
the wide range of rights that are violated in the context of
forced and coerced sterilization, where forced and
coerced sterilization occur other human rights violations of
women living with HIV are also occurring.
Given the above considerations, our immediate objectives
with the Think Tank were to:
n Facilitate a dialogue across a range of strategic
partners to assess the extent of rights violations in the
context of sexual and reproductive healthcare, with a
broad spectrum of African organizations and activists,
particularly organizations and networks of women
living with HIV;
n Bring together the expertise of women living with HIV
and other sexual and reproductive health and rights
advocates involved in the documentation of and
related advocacy around the forced and coerced
sterilization of women living with HIV; and
4
n Share lessons learned from the documentation of and
advocacy around the forced and coerced sterilization
of women living with HIV in Namibia (given the
extensive advocacy experience there around the
issue).
We compiled the results of the Think Tank and have
articulated them in the form of an issue brief. The idea
behind the issue brief is two fold. We wish to contextualize
the Think Tank discussions by taking the contributions of
the participants and relating them to the overall state of
knowledge on the violations of the sexual and
reproductive health and rights of women living with HIV.
We also wish to produce a document that could serve as
an advocacy tool to generate attention to and champion
the sexual and reproductive health and rights of women
living with HIV, and contribute to halting forced and
coerced sterilization.
Context
The importance of linking HIV and sexual and reproductive
health and rights (SRHR) is increasingly recognized: The
1
President’s Emergency Plan for AIDS Relief (PEPFAR) , the
global AIDS strategy of the United Kingdom’s Department
2
for International Development (DFID) , or the Global Fund
to Fight AIDS, Tuberculosis and Malaria are each a case in
3
point, as is the 2011 Political Declaration on HIV/AIDS .
Service integration is a key way of maximizing
opportunities for increasing people’s access to HIV
prevention, care, treatment and support; allows for more
cost-effective resource allocation; and provides a
comprehensive continuum of care. Linking HIV and SRHR
involves more than integrating services, however: it
necessitates promoting the rights of people living with HIV
and supporting their sexual and reproductive healthrelated decision-making and needs.
Coerced and forced sterilization of women living with HIV
6
have been documented and litigated in Chile and
7,8
Namibia , and reported by women living with HIV in
9
countries as far-ranging as Indonesia , South Africa,
10,11
Swaziland, Kenya, Uganda, and Zambia.
Much of the
research to date has been initiated and led by women
living with HIV with a broad spectrum of partners. Even
with growing attention to and advocacy around the issue,
the current evidence base is limited, and efforts for
redress are discrete and stymied by lengthy and
complicated legal processes. While UNAIDS should be
praised for breaking the international silence on coerced
sterilization through its recent “Stay the Rights Course”
statement to the 2011 United Nations High Level Meeting
12
on AIDS, more is needed.
Despite international recognition of the inextricability of
4
rights issues from the HIV epidemic and our response to
it, support for and promotion of the rights of women living
with HIV remains uneven. Forced and coerced
5
sterilization is one example of where women living with
HIV face rights violations in the context of seeking
reproductive health services.
6 Vidal F. and M. Carrasco, Mujeres Chilenas Viviendo Con VIH/SIDA: ¿Derechos Sexuales y
Reproductivos?: Un Estudio de Correlaciones en Ocho Regiones del Países, 2004;
http://www.feim.org.ar/pdf/blog_violencia/chile/MujeresChilenas_con_VIH_y_DSyR.pdf; accessed April 25, 2012.
1 PEPFAR emphasizes: prevention, care, and treatment for women and girls; addressing the linkages between HIV and
7 Gatsi, J. “Denying us the right to reproduce”, ALQ, September/November 2008, pp. 27-9.
gender-based violence; and expanding the linkages between family planning and reproductive health, on the one hand,
8 Nair, P. Litigating against the forced sterilization of HIV-positive women: Recent developments in Chile and Namibia,
and HIV care and treatment services, on the other. See http://www.pepfar.gov/strategy/ghi/134852.htm; accessed June
Harvard Human Rights Journal, 2010; 23(1): 223-31.
15, 2012.
9 Sabarini, P., “HIV-positive women resent sterilization advice”, The Jakarta Post, Jakarta, October 11, 2010;
2 DFID commits USD 6 billion up to 2015 for services that integrate HIV and sexual and reproductive health including
http://www.thejakartapost.com/news/2010/11/10/hivpositive-women-resent-sterilization-advice.html; accessed April
maternal/child health services. See Dickinson, C., et al. “Progress on scaling up integrated services for sexual and
25, 2012.
reproductive health and HIV”, Bulletin of the World Health Organization, 87(11), 2009; 846-851.
10 Mamad, F. A. U., Forced sterilization of women living with HIV/AIDS in Africa: A dissertation submitted in partial
3 United Nations General Assembly, 65th session, Political Declaration on HIV/AIDS: Intensifying our Efforts to Eliminate
fulfillment of the requirements for the degree LLM (Human Rights and Democratization in Africa), Faculty of Law and
HIV/AIDS, 8 June 2011.
Management, University of Mauritius, Mauritius, 30 October 2009;
4 For example, at both the 2006 and 2011 United Nations High Level Meetings on HIV/AIDS, world leaders reaffirmed
http://137.215.9.22/bitstream/handle/2263/12645/mamad.pdf?sequence=1; accessed April 25, 2012.
that “the full realization of all human rights and fundamental freedoms for all is an essential element in the global
11 Anand, N. et al., Bridging the gap. Developing a human rights framework to address coerced sterilization and
response to the HIV/AIDS pandemic.” In addition, the theme of the International AIDS Conference in 2010 was “Rights
abortion: Articulating the principle of free and informed decision-making, Health Equity and Law Clinic, International
Here, Rights Now”, and there has been considerable advocacy from various activists and organizations around
Reproductive and Sexual Health Law Programme, Faculty of Law, University of Toronto, 2009.
criminalization of HIV exposure or transmission and the human rights of different groups such as sex workers, men who
12 UNAIDS Reference Group on HIV and Human Rights, Stay the Rights Course: Statement to the 2011 United Nations
have sex with men, prisoners or injection drug users.
High Level Meeting on AIDS, 2011; http://www.stoptortureinhealthcare.org/sites/default/files/stay-the-rights-
5 A global campaign to end abuse in health care, Campaign to Stop Torture in Health Care, has found this abuse so
course_0.pdf; accessed April 25, 2012.
egregious and widespread that it is one of 3 focus issues, www.stoptortureinhealthcare.org.
5
The Namibian Example
With the Think Tank held on the eve of ICASA and with the
Namibia Women’s Health Network as a co-convener, we
focus on the Namibia experience to outline an African
example of how the practice of forced and coerced
sterilization was identified and how it has been addressed.
The history of activism around the issue of forced and
coerced sterilization of women living with HIV in Namibia
was born out of a “Young Women’s Dialogue” the
International Community of Women Living with HIV and
AIDS (ICW Namibia) convened in 2008. During this
dialogue, three participants from three different regions in
Namibia shared experiences of forced or coerced
sterilization. These cases were reported to the Deputy
Minister for Health, who dismissed the numbers as
negligible, thereby giving ICW Namibia (now the Namibia
Women’s Health Network) the mandate to investigate
further and develop an evidence base. Women living with
HIV received training and support to document these
human rights violations and worked in partnership with
lawyers and human rights advocates to identify them.
They gathered 40 cases from among support groups of
women living with HIV in three regions. A total of 230
women were interviewed.
The research uncovered that most sterilizations were
happening under the auspices of programs for prevention
of vertical transmission. Women were being made to sign
consent forms while going into theatre for Caesareans,
even sometimes during labor. The women did not find out
that they had been sterilized until later when coming for
follow-up care; some were not even aware what the
words meant. For example, some women only came to
understand what tubal ligation is after seeking
contraception and family planning services.
The Legal Assistance Centre (LAC), and other legal partners
including the Southern African Litigation Centre (SALC),
worked together with the Namibia Women’s Health
Network to seek justice and redress. Litigation could only
be brought to bear if the alleged misconduct had taken
place within the last three years. A review of the health
passports of women who had experienced forced and
coerced sterilizations found that three cases fell within
that timeframe. These were prepared for legal process,
with assistance from LAC, and the cases were presented to
the Court in December 2009. Since then, the same three
cases have been presented several times, most recently in
February 2011. The cases have been rested while
documentation and testimonies are reviewed.
“During the court hearing we
mobilized a lot of positive
women to come and give
moral support. One of the
women didn’t know what
Tubal Ligation was – when she
went home she checked her
health passport and saw that
it was marked on her passport
– she was very devastated.
They (health care workers)
usually hide it on the
passports – she is now one of
our leading campaigners.”
(Think Tank participant)
In response to the hearings, in August 2010 the
Government of Namibia committed to investigate the
issue, giving assurance that while their investigation was
on-going, circulars would be distributed among health
institutions to ensure the practice did not continue.
Activists involved in the issue have not seen evidence of
these circulars to date. The Government insisted that in
the event of sterilizations taking place, these decisions
were being made by individual doctors who were not
acting under the aegis of any Ministry-issued guidelines.
In September 2011 a new campaign was launched by the
Namibia Women’s Health Network due to reports they
had received from members that women were still being
forcibly sterilized.
“In March [2011] we went to one region where we were
told there was mass sterilization of women living with HIV.
We met with one group. The women said the doctor comes
into a ward and points: 'You, you, you, you to the theatre
and get sterilized.’ In that meeting we had a couple. The
husband was very upset because his wife had undergone
13
PMTCT and had some complications. He took her back to
the hospital and asked the health workers to check her.
They asked the husband can we sterilize your wife? The
husband said, ‘no I don’t think so – you need to give me
time to decide.’ They kept the woman in for observation
overnight. The next day they told him, ‘sorry your wife was
sterilized last night.’” (Think Tank participant)
13 Prevention of Mother to Child Transmission of HIV.
6
Regional and Global Responses
Since the emergence of the issue and related activism in
Namibia, Think Tank participants noted that cases of
forced and coerced sterilization have been reported in
South Africa, Zambia, and Swaziland. As shared at the
Think Tank, and in follow up communications, similar
stories are also emerging in Kenya, where an ICW
workshop on Reproductive Health and Rights first
explored the issue in 2010. As in Namibia, it was only
when the workshop provided them with a basic
understanding of their sexual and reproductive rights that
women became aware their rights had been violated. A
further 17 cases were reported during a study in the
Kibera district of Nairobi, and 10 cases in Kakamega.
Frequently the women consented to be sterilized in order
to access other services and in other cases, husbands
colluded with health workers without the women’s
consent.
14
The People Living with HIV Stigma Index , being or having
been rolled out in 30 countries to date, is also revealing
that vast numbers of women living with HIV experience
coercion to be sterilized (for example, 11.5% of
15
respondents in Malawi and up to 20% in Dominican
16
Republic ), among other sexual and reproductive health
rights violations. Vivo Positivo and the Center for
Reproductive Rights have also extensively documented
17
and successfully litigated the issue in Chile.
Advocacy and litigation around forced and coerced
sterilization in Namibia and elsewhere have caused a few
ripples on the world stage in diverse for a, including
18
reports on CNN and uptake of the issue by some of the
UN agencies. There is acknowledgement and agreement
that forced or coerced sterilization, abortion, or pregnancy
19,20
constitute ‘unconscionable’ rights violations.
14 Seewww.stigmaindex.org
15 MANET+, Policy Brief: People living with HIV have sexual and reproductive health rights too!!!, May 2012.
16 IPPF and Salamander Trust Associates, Piecing it together for women and girls. The gender dimensions of HIV related
stigma. Evidence from Bangladhesh, Dominican Republic and Ethiopia, 2011.
17Vivo Positivo and the Centre for Reproductive Rights, Dignity denied: violations of the rights of HIV-positive women in
Chilean health facilities, 2010;
http://reproductiverights.org/sites/crr.civicactions.net/files/documents/chilereport_single_FIN.pdf; accessed April 25,
2012.
18http://edition.cnn.com/video/#/video/world/2011/08/04/mabuse.namibia.sterilization.cnn
19 Representative (male) of UNFPA speaking at a session on sexual and reproductive health and rights at ICASA, 2011, in
reference to the forced or coerced sterilization of women living with HIV.
20 The UN Special Rapporteur’s 2011 report on the Right of Everyone To the Highest Attainable Standard of Health,
while not referring specifically to women living with HIV or any other specific population states that “The use of overt
physical coercion by the State or non-State actors, such as in cases of forced sterilization, forced abortion, forced
contraception and forced pregnancy haslong been recognized as an unjustifiable form of State-sanctioned coercion and
a violation of the right to health.” (UN General Assembly, A/66/254, para 12).
7
“I was giving birth to my
second child and went for a
Caesarean. I was sick. The
doctor said I think it is best for
you to be sterilized. I said I
think I have to discuss it with
my husband. [She said] “No –
this is best for you.” I was on
my way into theatre. I didn’t
sign anything. I came round
and she told me that she had
done what she said. I then had
to sign the form. I actually
didn’t want to have any more
children so didn’t follow it up,
but learnt during [an ICW]
meeting that [a] violation had
happened.” (Think Tank
participant)
Yet, other than through rhetoric, there has been little
specific acknowledgement of forced or coerced
sterilizations as a real example of institutional violence
against women living with HIV, let alone a committed
global response to addressing and preventing the same.
“Somehow when we share these stories they don’t take us
seriously. I’ve sat in a room with USAID, the CDC – and said
to them ‘we have data from the stigma index …’ I thought
this is going to work. They said, ‘Oh, we have a team
looking into that. To be honest they’re just stories. What
clinics? What names?’ With a lot of our evidence gathering
there’s no way we’re going to give them names.”
(Think Tank participant)
Restricted Sexual and Reproductive Choices for
Women Living with HIV
While forced or coerced sterilizations may be seen as
among the most abhorrent of rights violations faced by
women living with HIV, they sit along a spectrum of
institutional rights violations that are by no means
uncommon, and which taken together, reveal systemic
patterns of HIV-related violations of women’s sexual and
reproductive rights. These include documented cases of:
“I’ve lived with a fistula for 10
years until I got help this year.
When I started with it a
doctor told me it was normal
because I was HIV positive. I
believed anything that
happened was because of my
status. Went to doctor five
times for the fistula. I didn’t
have any hope that the thing
would go. In Washington DC I
learnt that it could be treated
and go away. These are things
that are hurting us as women
living with HIV. We have no
rights; people are denying us. I
am able to get help because I
am able to read. What about
women who can’t read and
don’t know their rights?”
(Think Tank participant)
n Access to ARV treatment being contingent on a
woman’s use of injectable hormonal contraception;
n Withholding of family planning advice, tools, or
options;
n Punitive denial of services, such as abortions or
sterilizations on women living with HIV - “A young girl
who was pregnant was refused an abortion because
she was deemed to have made her own bed and had to
lie in it knowing that she was HIV positive but getting
pregnant anyway.” (Think Tank participant);
n Judgmental attitudes among health staff, fear of which
may prevent women from seeking antenatal care
(ANC) services - “One woman can’t go for ANC because
last time she was pregnant she was told she mustn’t
get pregnant again – she is too scared of the health
providers to go back.” (Think Tank participant);
n Denial of treatment for other health issues – such as
fistula – on the basis of an HIV-positive status, whereby
21
HIV itself is cited as the cause of the health issue;
n Other sexual and reproductive health rights violations
among both women and men living with HIV found by
the People Living with HIV Stigma Index - for example,
in Ethiopia 44% of women living with HIV are advised
by health service personnel not to have children, due
to their HIV status; and
n Consultation by doctors with male partners of women
living with HIV on issues or decision-making around
fertility, from which the women are excluded - “It
becomes a learning point for us as men, because a lot
of times we escort women to hospital and a lot of times
the doctor will talk to the men instead of the women.”
(Think Tank participant).
21 According to the World Medical Association, “The human rights that are especially important for medical ethics
include the right to life, to freedom from discrimination, torture and cruel, inhuman or degrading treatment, to freedom
of opinion and expression, to equal access to public services in one’s country, and to medical care.” (World Medical
Association, Medical Ethics Manual, 2nd Edition, 2009, p. 20, accessible at:
http://www.wma.net/en/30publications/30ethicsmanual/pdf/ethics_manual_en.pdf) In addition to these, the WMA
Declaration of Lisbon on the Rights of the Patient enshrines the rights to: medical care of good quality; freedom of
choice; self determination; information; confidentiality; health education; dignity; and religious assistance. (See
http://www.wma.net/en/30publications/10policies/l4/). Further, the WMA Statement on HIV/AIDS and the Medical
Profession state that “Unfair discrimination against HIV/ AIDS patients by physicians must be eliminated completely from
the practice of medicine” (See WMA Medical Ethics Manual, p.41).
8
9
Emerging Issues
1. Fertility-related stigma and discrimination
Women’s fertility is frequently treated as public property,
or at best the property of their extended and nuclear
family. Similarly, women have long since faced
abandonment or rejection by partners, families, and
communities on the basis of infertility. Women living with
HIV who have been sterilized now face a double burden of
stigma – that of being HIV-positive, and that of being
unable to bear children.
“I am about to lose a husband whom I love dearly because
I was sterilized. My husband doesn’t have a child. I have a
child. I haven’t disclosed my status to his family – they are
asking constantly ‘Where’s the child? where’s the child?’ If
I told them I was HIV positive they would push me out of
the backdoor. My husband says ‘either I go sleep with
someone else, and we raise the child as our own, or we can
go our own ways’ because he doesn’t have a child, and
every time we have an argument he rubs it in my face –
you have a child, I don’t; you are HIV positive and that has
robbed you of your motherhood. If I can’t have a child with
this person I will go to the next person.’ It all adds to the
infection rate.“ (Think Tank participant)
2. The drive to eliminate vertical transmission
Now that we are nearing the deadline for the Millennium
Development Goals, prevention of vertical transmission of
HIV is high on the agenda of the global HIV response.
While the importance that prevention of vertical
transmission of HIV has acquired is highly desirable, it is
not without risks. Think Tank participants highlighted that
some service providers and prevention program designers
have misinterpreted this drive as a mandate to seek more
‘permanent’ solutions. They mentioned the example of
Project Prevention, a US-based organization that seeks to
prevent the birth of babies whose health has been
compromised by in utero exposure to drugs and alcohol,
by paying women ‘severely addicted’ to drugs or alcohol
22
to be sterilized or use long-term birth control. Project
Prevention has expanded its activities to developing
countries and has expanded its focus to HIV. In Kenya,
Project Prevention pays women living with HIV not to have
children.
“At the HLM [UN High Level
Meeting on HIV/AIDS June
2011; we learned] there was
an American organisation
starting to do sterilisation for
$40 in Kenya– we are just
about to finish that research.
We were surprised to learn
that the project is related to
the sterilisation of positive
women – so secret that until
you sit with the women to talk
about the issues you won’t
hear about it.” (Think Tank
participant)
Project Prevention in Kenya justifies its approach by
arguing that its work falls squarely within Prong 2 of the
Global Plan towards the Elimination of new Infections
among Children by 2015 HIV and Keeping their Mothers
23
Alive – prevention of unintended pregnancies among
24
women living with HIV.
Participants also raised that some policy makers support
the drive to eliminate vertical transmission by arguing that
increasing HIV-positive women’s access to contraception
and family planning is a cost savings for the HIV response.
The more HIV-positive births are avoided, the fewer HIV
positive children will need to be treated with expensive
antiretroviral medication in the future. This discourse
threatens to undermine rights-based arguments and
approaches which promote and protect the sexual and
reproductive health rights of all women, not to mention
undermining efforts to ensure the dignity of young people
who were born with HIV. For the participants, it is vital
that we support women living with HIV on technical
working groups addressing the prevention of vertical
transmission to question potentially counterproductive
approaches, policies, and language and promote the
sexual and reproductive rights of women living with HIV.
But in order to actualize that support, it is also essential to
23 UNAIDS, Countdown to Zero. Global Plan Towards the Elimination of HIV Infections among Children by 2015 and
Keeping their Mothers Alive 2011-2015, 2011. .
24 Prong 2 specifically calls for “Providing appropriate counseling and support, and contraceptives, to women living with
HIV to meet their unmet needs for family planning and spacing of births, and to optimize health outcomes for these
women and their children”, Ibid.
22 See http://www.projectprevention.org/
10
lobby for the greater and meaningful involvement of
women living with HIV in these and other relevant fora.
3. Peer exchange helps women learn the existence of
violations and how to address them
It is not uncommon that the sexual and reproductive
health and rights of women are violated without the
survivors themselves realizing it. This is especially the case
with forced or coerced sterilization. The experiences of
participants reveals that support groups have been an
invaluable way for women to find out they have been
sterilized at all, but also to understand that the
intervention they had was a sterilization and that the way
in which the sterilization took place constituted a violation
of their rights.
“The emergence of the issue of coerced sterilization in
Namibia as elsewhere was almost a chance finding; ‘When
people don’t know [that their rights are being violated],
they don’t know.’ The experience of many countries
already shows that women can be unaware that the
procedure has even taken place, and/or be unaware of
their rights, so have not framed their experience as a rights
violation. Therefore when asked about sexual and
reproductive health issues women may not automatically
raise it. This never came up by having a meeting about
sterilization – it came up through other conversations. But
when we went to the regions, the point of entry was
through the support groups. We asked about it directly
and most of the women didn’t know what it was. We met
again and they brought their health cards because they
couldn’t even read them.” (Think Tank participant)
Good practice models of peer to peer in service counseling
are emerging which promote positive women’s leadership
and participation as well as uphold the sexual and
reproductive health and rights of women living with HIV.
Positively UK successfully piloted its “From Pregnancy to
25
Baby and Beyond” program of peer counseling within
clinical centers of excellence working closely with clinicians
in prevention of vertical transmission programs. Peer
counselors ensured that women living with HIV were
aware of their rights, and had both accurate, up-to-date
information, and psycho-social support in making fertility
choices and throughout pregnancy.
“The Stigma Index in
Swaziland results documented
cases of coerced sterilization
in ante-natal settings and they
have used the data to
advocate to the government
to have expert clients to
provide counseling around
reproductive choices. Nurses
and Doctors are too busy to
explain the options. The
government is actually
supporting people living with
HIV to provide quality
counseling to enable women
living with HIV to make
informed choices.” (Think
26
Tank participant)
4. Seeking new partnerships and alliances
The forced or coerced sterilization of women living with
HIV has implications not only for the individuals directly
concerned, but also for their families and communities,
and threatens to undermine the sexual and reproductive
rights of all women. Activists on the issue need to broaden
the field of partners and allies to include, inter alia: men
(“making men see that their fatherhood is also being
indirectly denied”); traditional leaders (“the majority of
women who are forcibly sterilized in Namibia are coming
from areas where traditional leaders hold a lot of power”);
the women’s rights movement more broadly; and
organizations from other communities and sectors
affected by similar issues, such as those addressing
adolescent pregnancies or disabilities (“The disability
sector has been reporting cases of reproductive health
violations of disabled women for years”). Think Tank
participants concluded issues should be raised among
families and communities more broadly, especially as they
are sometimes called upon to make decisions on behalf of
women in emergency situations, or to give medical
consent where minors are concerned.
26 See http://www.stigmaindex.org/341/press-releases/understanding-hiv-stigma-in-swaziland.html; accessed June 15,
25 For more information on this project, see http://www.sophiaforum.net/articles/from-pregnancy-to-baby-andbeyond.html
11
2012.
General Conclusions
Violations of the sexual and reproductive rights of women
living with HIV in healthcare settings, including
experiences of coerced and forced sterilization, need to
continue to be brought into the light. There is need for
collective action, and to steer a common agenda without
duplication of work already underway. More research on
and documentation of these violations are needed. Not
enough is known, as shame and fear of further stigma,
discrimination and other rights abuses often prevent
women living with HIV from seeking redress. Furthermore,
while some work has been done to document the scope
and reach of the coerced and forced sterilization of
women living with HIV in a handful of countries, there is
need to better understand the extent of the practice in
other settings.
Women living with HIV and the organizations that bring
them together need to be supported in becoming
educated on the sexual and reproductive rights of women,
including women living with HIV. This empowerment
process is valuable in itself. But it is also necessary if an
effective, sustainable response to the rights violations of
women living with HIV is to be developed. Women living
with HIV need to be at the helm of the documentation and
subsequent advocacy work on the violations that affect
them. Advocates in Namibia involved in addressing
coerced sterilization in that country have shown it is
possible to do research and empower women living with
HIV on their rights at the same time through participatory
action research.
We see this as an important juncture to build with the
advocacy, action, and awareness to date to catalyze a
strengthened community of practice around
championing the sexual and reproductive health and
rights of women living with HIV.
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Key Recommendations
1. It is hard to get coerced sterilization on the agenda
because of skepticism about the level of occurrence. We
need more research and ongoing documentation to
expand the evidence base and assess the scale, scope,
and trends. We need to present more evidence and solid
argumentation about what is happening to women living
with HIV—and present the rationale as to why this
suggests a broader spectrum of sexual and reproductive
rights violations. This means we need to gather and
mobilize country data to gauge a more informed picture.
Advocates can replicate the “Young Women's Dialogue”
model used in Namibia to initiate research. Where there
has been research, we need to give visibility to the results
and communicate about them. Data are already available
in countries where the People Living with HIV Stigma Index
is being rolled out, and there are three research streams in
different stages of completion—in Namibia, in South
Africa, and in Kenya.
2. We need to raise awareness among women and
educate them on their SRHR at all levels, including at the
grassroots. This means empowering women to question
or challenge the advice of health professionals (“My body,
my womb, my decision, my right”) and to know which
services are available. It also means involving
communities, partners and families in SRH rights
awareness raising efforts. We can duplicate
previous awareness-raising successes. The “Young
Women's Dialogue” model can be used, not only for
research, but also to initiate or strengthen awarenessraising.
13
3. We need to develop strong collective advocacy using
the language of forced and coerced sterilization (and other
rights abuses), through a new or existing platform. Our
advocacy should initiate dialogue with policy makers, link
messages with other campaigns—such as those led by
young people, addressing vertical transmission, or
advancing positive health, dignity, and prevention, and
capitalize on key policy and advocacy moments and
engines. For example, the Global Plan Towards the
Elimination of New Infections Among Children by 2015
and Keeping Their Mothers Alive presents a key
opportunity to drawing more attention to the SRHR of
women living with HIV. At the national level, we should
talk to our constituents and leaders about forced and
coerced sterilization, and lobby governments to introduce
protective policies and legislation.