Stacking stock 2005-2012: Africa Campaign on Disability and HIV and AIDS Muriel Mac-Seing

1. Stacking stock 2005-2012: Africa Campaign on Disability and HIV and AIDS Muriel Mac-Seing HIV and AIDS Technical Advisor, Handicap International Disability Networking Zone, Global Village 19th International AIDS Conference, Washington DC, July 25, 2012

2. From the UNGASS report of 2010 People living with HIV, people with disabilities and transgender people have been added to the list of key populations.

3. For the first time in UNAIDS’ Strategy 2011-2015… “When social support and other programmes for persons with disabilities are delivered in an HIV-sensitive manner, they contribute to overcoming the historic neglect of HIV prevention and support to persons with disabilities.”

4. The Political Declaration on HIV and AIDS: Intensifying our efforts to eliminate HIV and AIDS (June 2011) … recognizes the need to take into account the rights of persons with disabilities as set forth in the UN Convention on the Rights of persons with disabilities, in particular with regard to health, education, accessibility and information, in the formulation of our global response to HIV and AIDS.

5. Outline of presentation • Background • Objectives of the Africa Campaign on Disability and HIV and AIDS • Guiding principles • Main actors involved • Main activities undertaken with parallel at the international level • Kampala Declaration • Example of spill over effects in specific countries where Handicap International is working on HIV and disability • Lessons learned • Ways forwards

6. Background • Co-founded by the Secretariat of the African Decade for Disabled Persons (1999-2009) and Handicap International in 2006 • Rationales for such a campaign: • Persons with disabilities made up around 10% of country’s population at that time (now around 15% according to WHO/WB, 2011) • In Africa, they face the same, and in some cases higher, risks to HIV infection, compared to their non-disabled peers • The rights of persons with disabilities to access HIV information and services as a citizen of their country are being violated • An unifying umbrella composed of disabled people’s organisations (DPOs), people with disabilities, organisations of PLHIV, NGOs, AIDS organisations, WHO, researchers and activists • Launch of the Campaign in 2007 in Cape Town, South Africa • Steering Committee of Campaign dissolved at the end of 2010 to allow full ownership of various countries who have decided to work on disability and HIV at national level

7. Objectives of the Campaign • To create global awareness of the fact that HIV and AIDS affect persons with disabilities, too • To broaden and strengthen the knowledge and skills of persons with disabilities in Africa to participate in the local response to HIV • To mainstream HIV and AIDS into all areas of the disability sector • To mainstream disability into HIV and AIDS strategies, programmes and guidelines both nationally and internationally, and participation of persons with disabilities in the process behind these documents • To ensure equal access to HIV prevention, treatment, care and support services for persons with disabilities

8. Guiding principles of the Campaign • Full participation of disabled persons in actions that involve them • Greater involvement of disabled and non-disabled persons living with HIV • Equal right to HIV and AIDS information and services for every African, including disabled Africans • Non-discrimination • Gender equity • Partnership development • Emphasis on in-country and grassroots advocacy • Capacity development of disabled persons themselves for sustainable action • Achievement of change at the grassroots level to improve the lives of persons with disabilities

9. Secretariat of the African Decade of Persons with Disabilities (1999-2009) Handicap International TASO NUDIPU A.B.B.E.H. Burkina Faso CBM VSO SHIA Advantage Africa Dutch coalition on disability and development International Deaf Children’s Society UK AIDS and Human Rights Project HEARD DHAT LVCT ADD PHOS, PROGESSIO Light for the World DPOP Power International A.F.D.B. Blind But Like You CCBRT Tanzania ECDD Ethiopia National DPOs WHO Main actors involved

10. Key milestones related to disability and HIV UNAIDS strategy on HIV and disability + Presentation on inclusive Framework with UNAIDS Global survey on disability and HIV (WB and Yale U) UNAIDS policy brief on disability and HIV 2009 Framework on disability inclusion in NSP with UNAIDS UNCRPD 2006 Political Declaration on HIV and AIDS including disability Elaboration of the Campaign strategy 2007-2011 UNAIDS strategy 2011-2015 Meetings in Maputo, London and Abuja Washington IAS 2012(disability zone, sessions with UNAIDS, accessibility) Dakar: Pre-ICASA meeting Decision to work on advocacyfollowing evaluation of HI’s HIV project in MozambiqueBurundi and Kenya UNGASS report 2010 Cape Town: Launch of the Africa Campaign on disability and HIVby the Secretariat of the African Decade of PWD and HI Addis: ICASA 2011and pre-ICASA(ISC, disability zone, sessions with UNAIDS, peaceful demonstration, accessibility) Nairobi: taking stock of HIV and disability advocacy Dakar: ICASA 2008 (sessions) Vienna: IAS 2010 (disability zone and sessions) Kampala declaration 2004 2005 2007 2008 2009 2010 2011 2012

11. In 2008, the Kampala Declaration on Disability and HIV and AIDS was adopted and disseminated at ICASA Dakar 2008 in French, English and Portuguese Key recommendations on the inclusion of disability in HIV policies and programming for African governments, AIDS organisations and services providers, AU, UN agencies, donors, researchers, universities and DPOs After 2008-2009, many countries which were involved in the African Campaign decided to “indigenize” the Campaign at the national level, e.g. Kenya, Uganda, Mozambique and South Africa Kampala Declaration

12. Spill over effect where HI is working on HIV and disability Inclusion of persons with disabilities in NSP Disability inclusion in American HIV NGOs Buy in of UNAIDS and UNWOMEN National platform on disability and HIV Inclusion of persons with disabilities in NSP Inclusion of persons with disabilities in NSP Inclusion of persons with disabilities in NSP National platform on disability and HIV National campaign on disability and HIV National campaign on disability and HIV

13. Lessons learned The Campaign was composed of many various organisations and entities; it was complicated at times to get all moving together Leadership roles among steering committee members needed to be better defined to avoid responsibilities falling on same members Strong coordination and communication crucial when many people from different organisations from different countries are involved Commitment to the Campaign should have been also at institutional level and not only at individual level Global Campaign strategy should have been clearly broken down into annual action plans with defined deliverables

14. Lessons learned (cont’d) Monitoring of the Campaign processes and evolutions should have been budgeted through all Campaign members and not only relying on a few At least one paid Campaign coordinator would have been strategic to globally coordinate and monitor Campaign activities Campaign activities were heavily dependent on HI’s HIV projects; financial diversity is a must It would have been strategic/important for all campaigners to systematically include the Campaign activities/budget into their own projects; hence increasing financial resources and decreasing dependency on one/few organisations Finally, the Campaign was a great catalyst for many DPOs, NGOs and even research institutions to work on HIV and disability and spread the importance and necessity to address the rights of persons with disabilities in HIV policies and programming at national level in different Sub-Sahara African countries

15. Ways forwards… Since the Campaign has been already indigenized in and adapted to the needs of many countries, it would be strategic to undertake an evaluation of its impacts Strategic alliances on HIV and disability can be more focused by being composed of a few actors: NGO, DPO, research institute and UNAIDS, each complementing one another (not competing) Continuity activities of this Campaign can focus on specific messages such as: Disability-related needs of PLHIV Rehabilitation services (cognitive, physical, etc.) for PLHIV (disabled or not) Improve the inclusion of disability in national AIDS strategic plans (NSP) and monitor the progress during the course of its implementation and at review periods, by using the Framework on disability inclusion in NSPs Support and work closely with UNAIDS on the operationalisaiton of their strategy on HIV and disability (2012) Lobby mainly USAID, PEPFAR, Global Fund nationally, in enhancing the reach of their “vulnerable groups/populations” by including women, men, children and youth with disabilities in relation to HIV and AIDS funding

16. Thanks! Merci ! Gracias!