Measuring for change:
Building the capacity of people living with HIV to
inform policy and practice
Lucy Stackpool-Moore
AIDS2031: Mobilizing Social Capital
30 March 2009
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THE PEOPLE LIVING WITH HIV STIGMA INDEX
Stigma, prejudice and discrimination
Barriers or opportunities to create social capital? ... isolation, ostracism, solidarity
Cross-cutting and need to be addressed for any effective response to HIV
Multiple layers, intersecting, situated and contested identities in a social context
The People Living with HIV Stigma Index as a tool for promoting social capital
Community-based research and advocacy tool
Resource, support and identity strengthening through participation
Example from a national case study = Dominican Republic
Example from an international advocacy initiative
How can the process of documenting, reporting and advocacy contribute to:
Measuring social capital?
Mobilising social capital?
Meaningfully involving people living with HIV?
Making human rights a reality?
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1) STIGMA AND DISCRIMINATION
We know stigma is pervasive and continues to create barriers for universal to
access to prevention, treatment, care and support
Stigma is subtle and can take different forms (enacted, internal, perceived, by
association) and can have many layers
5th pillar of Universal Access = non-discrimination
We need to know more about
... how to measure the changing realities of stigma as it affects people living with HIV
... evidence of the impact of current policies exacerbate HIV related stigma and
discrimination (e.g. criminalisation)
... how experiences change over time, for example in response to policy change or
specific interventions
... how different experiences of stigma are between people living with HIV e.g. women,
young people, MSM, people who use drugs, sex workers
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A TOOL FOR MOBILISING SOCIAL CAPITAL:
THE PEOPLE LIVING WITH HIV STIGMA INDEX
History: developed in partnership since 2004
4 ‘P’s … PLHIV, Process, Product, Partnership
Voice, visibility, recognition and leadership from communities of, and individual,
people living with HIV
Understanding barriers and opportunities for social capital, stigma in:
- Different settings and locations of discrimination (health clinics, schools, workplace etc)
- Different groups (key populations, people who use drugs, migrants etc)
- Layers of stigma
- Laws and policies (implementation?)
- Feelings and self esteem (overcoming and challenging stigma)
- Measuring change over time
Building social capital by generating local ownership and capacity development—
seed grants, standards guidelines, training, income generation, technical
assistance, referrals, outreach, partnership, individual champions etc
Where we are today … 128 people have been trained in 7 regional workshops,
from more than 90 organisations and 69 different countries, 13 countries 2009
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2) MEASURING HUMAN RIGHTS:
THE PLHIV STIGMA INDEX in the DR
In 2007 it was estimated that 65,000 adults and children are living with HIV—
approximately 1.1% of the adult population (UNAIDS, 2008).
Signatory to the UNDHR, party to ICESCR and UNGASS Declaration of Commitment
One of the main drivers of the epidemic in the Dominican Republic is the entrenched
inequality between men and women:
“The government has failed to take seriously the link … between the spread of the disease
and entrenched sex inequality, violence against women, and social biases that
otherwise limit women’s autonomy and rights” (HRW, 2004, 2)
GTZ funded implementing of The People Living with HIV Stigma Index, making money
work for women, 510 women, 486 men and 4 transgender interviewed in 4 regions of
the Dominican Republic
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Ley 55-93 (1996):
Protecting the rights of people living with HIV?
73.3% of women and 64.8% men knew about the Law 55-93
Almost one in four people interviewed (23.1%) reported a violation of their human
rights as a person living with HIV in the last 12 months
Only 10% tried to readdress this situation
Similar findings to Human Rights Watch (2004) … Amnesty International (2006) … The
People Living with HIV Stigma Index (2008-9). What will it be different in 2011?
“People don’t know what their rights are—they don’t know that their rights are not being
enforced. It has been empowering to talk to people about their rights. We have new
friends, new partners, and my personal hope is that this will help us eliminate stigma”
(Stigma Index researcher, June 2008)
“As an activist and as practitioner in the Dominican Republic, I want to use the findings from
the index to make definite recommendations for policies” (Stigma Index co-coordinator,
REDOVIH June 2008)
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3) CRIMINALISATION
AND ITS DISCONTENTS
‘Criminalization’ refers to the application of criminal law
to prosecute HIV transmission or exposure to another person.
Several countries have laws that are used to criminalize HIV transmission that are
often justified on the grounds of promoting public health.
BUT ‘Criminalization’ can:
weaken HIV prevention efforts (and therefore public health), by creating
barriers for accessing health services and the uptake of testing
undermine human rights, by having laws that only relate to people living with
HIV
fuel stigma and discrimination, by conflating attitudes, perceptions and
morality associated with HIV with criminality
OSI, IPPF/ICW/GNP+, UNAIDS, AI … campaign gaining momentum
The People Living with HIV Stigma Index in UK, Zambia and other countries in 2009
to generate evidence to inform the campaign
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CRIMINALISATION
AND ITS DISCONTENTS
“Today one of the most pressing issues in the AIDS epidemic is the use of criminal
statutes and criminal prosecutions against HIV transmission. Such laws are
increasingly wide in their application and frightening in their effects. HIV is a virus,
not a crime. That fact is elementary, and all-important. Too often law-makers and
prosecutors overlook it.”
(Edwin Cameron, Justice of the Supreme Court, South Africa)
“Criminalizing HIV can affect people living with HIV who are already suffering from
several kinds of stigmatization and discrimination…. If the law criminalizes HIV
transmission it could lead to the total exclusion of people living with HIV”
(Ghizlane Naoumi, Moroccan Family Planning Association)
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4) Lessons learnt and looking to 2031
We need to shift the paradigm by
... Generating and supporting opportunities for local ownership of capacity building
initiatives that can support people living with HIV to confront stigma and
discrimination in the context of wider social determinants of health
“Any crystal if processed correctly can become a diamond. The Index has many values
and it is up to each individual and country to make the most of it”
(Timur Abdullaev, Uzbekistan, 2009)
... Mobilising social capital that benefits individuals and communities
“I have learnt a lot. Before I thought you needed to be a graduate to conduct research.”
(Researcher, South Africa, 2006)
“Being interviewed by another person living with HIV does make a difference – as you
feel they really would understand more about how you feel about things related to
being HIV positive” (Researcher, South Africa, 2006)
... Promoting actor oriented approaches that can be rooted in the multiple layers of
identity and social context, and can support people living with HIV to measure,
speak out and inform policy and practice, and eliminate stigma, prejudice and
discrimination
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Summary of key points:
How the Index can be a tool for mobilising social capital
The process of documenting, reporting and advocacy can contribute to:
Measuring social capital
Documenting stigma, prejudice and discrimination from the perspectives of people living with
HIV
Mobilising social capital
Referrals, outreach, follow-up
Implementing partnership
Capacity development
Income generating
Process as valuable as the product of the research
Meaningfully involving people living with HIV
GIPA principle in action
Since inception in 2004, an initiative by and for people living with HIV
Making human rights a reality
Process and product working together to document and overcome human rights
violations
Voice, visibility and participation
Evidence to inform better policies and practices
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Lucy Stackpool-Moore
lstackpoolmoore@ippf.org
HIV Officer: Stigma
IPPF: London
www.stigmaindex.org
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