Measuring for change:

1. 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

2. 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?

3. 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

5. 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

7. 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

8. 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)

10. 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

11. 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)

12. 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

13. 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 • Mobilisingsocial 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

15. Lucy Stackpool-Moorelstackpoolmoore@ippf.orgHIV Officer: StigmaIPPF: Londonwww.stigmaindex.org