The Intersection of Disability and HIV

1. The Intersection of Disability and HIV Emelia Timpo Ph.D. Jill Hanass-Hancock Ph.D. UNAIDS and HEARD

2. Ronald Ndlovu Film “Stepping into the Unknown” Nominated for the African Movie Academy Award 2011 (or African Oscar) www.heard.org.za “I went to one hospital, a TB hospital and then I found myself in another hospital. When I woke up I thought maybe I was somewhere else, some spiritual world.Everything was different I could not see anything. The light was spreading all over, but I could hear people talking and I was wondering where I was...Because those pills I think I took them I reacted and that caused the blindness...”

3. Overview Disability and HIV intersectionality Interrelationships of Disability & HIV Responses to date What is missing? Challenges Way forward and next steps

4. Why are People with Disabilities at increased risk of exposure to HIV and AIDS? • Lack of access to education in particular sexuality education • Increased risk of sexual abuse and exploitation • Potential of increased risk behavior • Lack of access to health services • Increased likelihood of living in poverty • Stigma (disability and HIV), misconceptions and negative attitudes

5. HIV-Prevalence of at Risk Populations in South Africa Source: South African National HIV Prevalence, Incidence, Behaviour and Communication Survey, 2008:

6. What is HIV related disability? • 1. Strong link between HIV and mental health (e.g. depressions anxiety) • 2. Scattered evidence that HIV, its opportunistic infections and treatment may be related to other co-morbidities that lead to episodic or permanent impairment and disability e.g.: • Symptoms such as pain, fatigue, emotional challenges, skin irritations, visual impairments etc. • Health conditions such as HIV-dementia, peripheral neuropathy , lipodystrophy • activity limitations particularly related to work, mobility, personal hygiene and domestic activities • Participation restrictions, stigma and discrimination

7. Interrelationship of Disability and HIV People with disabilities and/or mental health problems PLHIV who experience disability People who care for PLHIV or other dependents • mental health disorders • e.g. depression, • schizophrenia, anxiety, • substance abuse … • neuro-cognitive • disorders... • sensory impairments (visual, hearing, touch) • problems with the • digestive system • problems with sexual • functions • episodic disabilities • stigma, discrimination ? • increased risky • behaviour • increased risk of • sexual abuse and less • access to justice • negative attitudes from • health care staff • problems with • accessing health • services and education • can affect adherence • AIDS related activity • limitation is associated • with increased child • healthcare tasks, lower • school attendance, food • insecurity and • educational outcomes • the interrelationship between increased care-giving burden and disability is exacerbated in the context of HIV

8. Proposed Responses

9. Actions for Governments Ratify and incorporate into national law instruments that protect and promote the human rights of persons with disabilities, including the Convention on the Rights of Persons with Disabilities (CRPD) Incorporate the human rights and needs of persons with disabilities into national HIV strategic plans and policies Provide persons with disabilities with the same range and quality of affordable HIV, sexual and reproductive health services as the rest of the population Involve persons with disabilities in the planning, implementation and evaluation of HIV programmes, including national AIDS authorities

10. Actions for Civil Society Increase networking and information exchange between HIV and disability service, disability advocacy and human rights organizations. Ensure disability services, such as support for independent living, are available to people living with HIV. Advocate for persons with disabilities to have full sexual and reproductive rights, and freedom from physical and sexual abuse. Ensure campaigns to combat stigma and discrimination of persons who are HIV-positive are accessible to persons with disabilities.

11. Actions for International Partners Ensure HIV policies, guidelines and programmes are designed and implemented to be accessible to all persons with disabilities, and make it mandatory that all HIV programmes incorporate access to information, support and services for persons with disabilities. Develop, validate and support the use of impairment-specific and disaggregated indicators in the national AIDS monitoring and evaluation system. Promote and fund research on HIV and disability, ensuring that persons with disabilities are included on the research team designing, implementing and analysing the research.

12. Other key progress to date Outcome of high level meeting on HIV/AIDS – June 2011 Establishment of clearing house for data on AIDS and Disability – AIDSpace Framework for integrating disability into National AIDS Strategic Plans Work of informal networks – Global Contact Group on AIDS and Disability (GCGAD) Development of UNAIDS strategy on disability and AIDS

13. Recognized the need to take into account the rights of persons with disabilities to health, education, accessibility and information in the formulation of our global response to HIV and AIDS; Noted with concern that prevention, treatment, care and support programmes have been inadequately targeted or made accessible Commit to ensure that financial resources for prevention are spent cost-effectively and with particular attention to people with disabilities; Commit by 2015 to address factors that limit treatment uptake and contribute to treatment lack of accessibility of information Outcome of High-level meeting on HIV/AIDS – June 2011

14. Accurate data on disability prevalence on country level Data on HIV prevalence among people with disabilities Studies with people with disabilities who also live with HIV Studies focusing on sexuality and sexual abuse in resource poor settings Studies focusing on HIV and the workplace in resource poor settings Studies focusing on the disabling effects of HIV in resource poor settings Studies combining disability and mental health Disability inclusive NSPs Good Practices and their evaluation What is Missing?

15. Challenges • Lack of comprehensive national data on AIDS and disability • Mobilizing resources to support ongoing efforts • Scaling up the integration of disability and AIDS at the programmatic level • Limited partnerships between the AIDS and disability communities

16. Way forward and next steps • To emanate out of this and other events during the IAS

17. Support the integration of disability in National Strategic Frameworks and Plans Continue advocacy on issue at regional and global fora. Support mechanisms for data collection as part of UNGASS Strengthen networks working on disability and AIDS Integrate human rights organizations not previously working on HIV and disability , assist DPOs to be part of AIDS committees and influence their strategic plans Facilitate networking between disability and HIV at grassroots levels Possible Next Steps

18. Possible Next Steps • Facilitate networking between disability and HIV at grassroot level • Coalition and partnership building at horizontal and vertical levels • Maintain a network – to share experiences, tools and materials • Bridge gap between academics and activists • Identify support to address the data challenge • Engage the private sector in AIDS and disability fora.

19. Thank you