Participation and empowerment

1. Grassroots and Academia Fighting Marginalisation Bergen, January 12th 2007Empowerment through participation: Experience from a project on HIV/AIDS in South Africa Wenche Dageid Department of Psychology University of Oslo

2. Participation and empowerment Participatory and empowerment approaches are similar in their focus on the interdependence between individual and context.The approaches differ in that empowerment aims to bring about social changes that will benefit oppressed or disadvantaged groups insociety. Active participation implies that people commit themselves, develop skills to make decisions and act in ways that positively affect their lives and help them achieve social goals that are of importance to them. In essence then, empowerment can be conceptualised as a long-term, social process whereby people move from a dependent, powerless, passive position towards a position of control, competence and power

3. What could improve HIV positive women’s lives? • -Respect, - “ to be granted like other people” • To meet others in the same situation, exchange • experiences • To be able to influence the creation and • implementation of HIV/AIDS programs • Information and education in the local community, in • local languages, by local people • - Material and emotional support • - Confidentiality • - Free medical treatment • Governmental care and support structures for orphans • and children of HIV positive parents

4. ”Caring for those infected means caring for the future” A community based, participatory intervention with the aim of meeting the needs of HIV positive people for HIV positive people in the Mankweng area of the Limpopo Province of South Africa. Further: to develop a sustainable and empowering support system in the area. 2002- 2005

5. By establishing holistic, community based care and support programs, HIV positive people might be able to stay healthier, live better lives, and be able to protect, inform and care for themselves and others. If we care, the little ones might also survive

6. Phase 1:September 2003- May 2004Provided a background for intervention. Questionnaires with 186 women and 64 men (N= 250) between 18 and 73 years old 55 in-depth interviews, 3 focus groups, disposable cameras, statistics, observation, media info.

7. ”Why should I worry about AIDS today when I can die from hunger tomorrow??” Man, 43 years old

8. Phase 2:March 2004 – May 2004 Mankweng Support Group (MSG) planned SMART = SPECIFIC, MEASURABLE, APPROPRIATE, REALISTIC AND TIME-BASEDinterventions based on needs and resources. Develop the support group, norms and rules, codes of conduct. 3 projects Vegetable garden Selling at occasions Car wash

9. Phase 3:June 2004 – June 2005 Implementation & monitoring of the projects. Group processes, reporting journals and cash books, diaries, workshops and skills training. Phase 4:July 2005 Evaluation and means to promote sustainability. In-depth interviews, repeated questionnaires, participatory observation, journals, diaries, SWOT analysis

10. Empowerment: outcomes • Provision of vegetables for MSG members and their families (maize, spinach, beetroot, carrots) • 30 members were trained in basic HIV information and received peer educator’s diplomas at the end of the workshop. • 7 members trained to work as lay counsellors. • Skills building and workshops • Some members got piece jobs through networks that they built through being members of thesupport group. • Knowledge and networks meant improved access to health care and social services (grants, ARVs)

12. Collective efficacy and community outreach Members started to: • request more information and workshops, and actively seek out opportunities outside MSG. • attend several workshops, meetings and events held by different relevant organizations. • operate in partnership with the local health care services, CBOs, NGOs and government. • compete about who should disclose at events • recruit new members through community outreach activities • actively suggest venues for outreach, such as rural schools • attend funerals of deceased members, as MSG representatives

13. Photo shot from my car as we were on our way tohold a campaign at a school in a ’deep rural’ area.

14. Evaluation The evaluation results indicated that the members (n=47) perceived the support initiative to be overwhelmingly positive, both in terms of the acquisition of skills and the ability to deal with emotional, social and relational challenges. Almost half of the group reported that their needs were met. The members perceived that the community stigma had decreased, and support in and usefulness of the support group had increased. ‘I have learnt to cope’, ‘ I now live positively’, ‘I got more information on HIV/AIDS’, ‘I teach other about HIV/AIDS’, ‘I feel stronger now’, ‘I got support’, ‘I now love others who are HIV positive like myself’, ‘I have hope for the future’, ‘I am now honest with myself’, ‘ I can now grow vegetables’, ‘I can run projects for HIV positive people’.

15. 28-item General Health Questionnaire (GHQ) (Goldberg & Hillier, 1979)

16. Why did it work? Respect means to show consideration or care for somebody; to admire or have a high opinion of somebody; and to avoid interfering with or harming somebody. Respect means that the stories of other people engage you as if they were your own stories; it means seeing the other as a person or ‘subject’, as opposed to the traditional ‘objectification’ of people. It means seeing the similarities between us as humans instead of (negatively) focusing on the differences. Respect LOVE

17. Why did it work? cont. Respect implies showing empathy and taking each other seriously. Exchange of views and perspectives, and building of trust between community members and outside researchers (common cause). Appropriate, respectful and open communication that takes into account the cultural and contextual influences on our thoughts, emotions andactions.This includes a continuous reflection on one’sown and the other’s position in the world, and a willingness to compromise when necessary. SOLIDARITY

18. Why did it work? cont. Partnership Groupings at a grassroots level must build alliances with powerful actors and work together to achieve their goals. These alliances are not about shifting the responsibility of addressing HIV/AIDS onto the shoulders of the local community. It is rather a strategy designed to engage the strengths and abilities of all organizations involved. Gains:Recognition, acceptance, support and assistance (finances, practicalities, skills etc), and ability to influence policy and practices. RIGHTS

19. Lessons learned A basis of respect and partnership…love, rights, solidarity Huge demand for skills building, motivation and practical assistance. Networking and partnerships are essential. Much of this projects success is due to the commitment and assistance from the local health workers and NGOs. Stable funding is necessary for commitment andactivism over time, and for projects to move from mere survival to empowerment and expansion.

20. Lessons learnedcont. • Must deal with stigma, exclusion and psychological issues. • A supportive, confidential atmosphere is crucial for HIVpositive people to disclose, ’live positively’, join support groups, and forcommunity out- reaches. • Personal engagement and involvement over time is crucial.