Welcome and Overview

1. “HIV, Disability and the Convention on the Rights of Persons with Disabilities: Challenges and Opportunities” Side Event to the Fifth session of the Conference of States Parties to the Convention on the Rights of Persons with Disabilities, 12-14 September 2012 Organized by the Canadian Working Group HIV and Rehabilitation with support from the Levi Strauss Foundation and One Billion Strong

2. Welcome and Overview Elisse Zack, M. Mgt., M. Ed., Executive Director Canadian Working Group on HIV and Rehabilitation

3. Session Overview This side event is intended to provide the opportunity to collectively explore: • The links between HIV, disability and the CRPD. • Challenges faced by people living with HIV and other disabilities. • Programmes and policies that integrate HIV and the CRPD. • How the CRPD can be used to promote the inclusion of, and protect the human rights of people living with HIV.

4. Speakers and Agenda • Elisse Zack, Executive Director, Canadian Working Group on HIV and Rehabilitation • Wendy Porch, Disability Specialist and Education Coordinator, Canadian Working Group on HIV and Rehabilitation • Allison deFranco, Disability Programme Advisor, One Billion Strong • Large Group Moderated Discussion

5. Canadian Working Group on HIV and Rehabilitation • Established in 1998, CWGHR bridges the traditionally separate worlds of HIV, disability and rehabilitation • CWGHR is a national charitable organization aiming to address the complex and fluctuating health and social needs of people living with HIV and other episodic conditions by improving access to rehabilitation care, support and services

6. Canadian Working Group on HIV and Rehabilitation • Currently working to raise awareness of: - the relationship between HIV and disability - disability human rights tools that can promote the inclusion and rights of people with HIV - in the HIV and disability communities www.hivandrehab.ca

7. One Billion Strong • One Billion Strong is an international, non-profit, non-governmental organization working to advance the rights of persons with disabilities and to facilitate participation, equality, and inclusion in society

8. One Billion Strong • The mission of One Billion Strong, so named to signal the world population of persons with disabilities, is to ensure that the obligations in the United Nations Convention on the Rights of Persons with Disabilities are made accessible through participatory education and implemented through innovative advocacy and example www.one-billion-strong.org

9. Who is in the Room? • Where do you live? • What type of work do you do (either volunteer or paid)? – e.g. researcher? Front line health care? Support worker? Teaching? Government? Other policy work? Other? • Do you know people living with HIV? • Do you work with HIV? Disability? • How would you rate your current knowledge of HIV?

10. HIV and Disability: What are the Links? Wendy Porch, M.Ed Disability Specialist and Education Coordinator, Canadian Working Group on HIV and Rehabilitation

11. Disabling Effects of HIV As HIV progresses, co-morbid conditions can include: • HIV-Associated Dementia (HAND) • Depression, Anxiety, Post Traumatic Stress Disorder, Addictions, medication interactions • Cardiovascular Disease, arthritis, osteoporosis, fatigue • Some types of cancer (Karposi’s Sarcoma, AIDS Associated non-Hodgkin’s Lymphoma, lung, anal, liver) • Neuropathy, pain and associated mobility/agility issues Tuberculosis, Hepatitis C • Metabolic Disorders (HIV-associated lipodystrophy (HALS) and Diabetes), serious liver problems D. M. Israelskiab, D. E. Prentissb*, S. Lubegaa, G. Balmasb, P. Garciab, M. Muhammadb, S. Cummingsb & C. Koopmana. Psychiatric co-morbidity in vulnerable populations receiving primary care for HIV/AIDS Ontario HIV Treatment Network. Issues of comorbidity in HIV/AIDS: An overview of systematic reviews.retrieved from: http://www.ohtnweb.ca/OHTNWebAP/Publications/PDF/cihr_review_co-morbidities_report_2010-12-07_final.pdf

12. HIV under the CRPD “The Convention does not explicitly refer to HIV or AIDS in the definition of disability. However,States are required to recognize that where persons living with HIV (asymptomatic or symptomatic) have impairments which, in interaction with the environment, results in stigma, discrimination or other barriers to their participation, they can fall under the protection of the Convention.” UNAIDS Disability and HIV and Policy Brief 2009

13. People with Existing Disabilities as an HIV Vulnerable Group People with other or pre-existing disabilities are: • highly marginalized and amongst the poorest and least educated in society • More likely to be abused or assaulted, less able to protect oneself, less access to justice services • Persons with disabilities may be excluded or turned away from HIV education forums or programmes • Lack of access to education, low literacy and a lack of accessible formats makes it difficult to access HIV prevention and treatment information • Confidentiality is difficult for persons with disabilities who require support workers, or family supports • In settings with limited access to ART, persons with disabilities considered a low priority for treatment • Negative drug interactions are not understood Adapted from UNAIDS, CWGHR HIV, Disability and Mental Health: What are the links? January 2012

14. Lack of Accessible Services ``If you have a wheelchair and you go to an AIDS service organization and the first thing you see are all these flight of stairs, you are immediately discouraged. Secondly, HIV testing and counseling services are supposed to be confidential. But if you’re deaf and you go into this service, you have to go with someone who can interpret for you, which takes away the confidentiality part. So in the end, people don’t turn up.” Winstone Zulu HIV/AIDS and tuberculosis activist, Zambia

15. HIV-Related StigmaFear of HIV infection through casual contact Considered less than human Individual blamed for HIV infection HIV infection caused by curse Exclusion from social events Undeserving of education Unworthy/undeserving of employment Sexually deviant Disability-Related Stigma Fear of acquiring disability through casual contact Considered less than human Individual blamed for disability Disability caused by curse Exclusion from social events Unable to be educated Unable/incapable of employment Asexual HIV and Disability Related Stigma From: HIV/AIDS, Disability and Discrimination: A Thematic Guide on Inclusive Law, Policy and Programming. One Billion Strong. Retrieved from: http://www.one-billion-strong.org/site/297/Publications/HIV/AIDS-Disability-and-Discrimination

16. What are the Commonalities? • Stigma and discrimination • Difficulties finding/keeping employment • Interactions with social assistance/benefits systems, poverty • Interactions with health care and social service systems that are not designed to see overlaps in categories • Lack of power/lack of choice in health care and other service provision.

17. Supporting Human Rights for All • Many shared human right related barriers • Hope that we can share human rights tools to ensure that we all live free from discrimination and as part of an inclusive community • Understanding and applying the CRPD is an essential element of this Figure 1 The three dimensions of the HIV-disability field evolving over time. Hanass-Hancock J. & Nixon S.A. The fields of HIV and disability: past, present and future. Int AIDS Society 2009; 12:28

18. HIV, Disability and the CRPD Allison deFranco, Disability Programme Advisor One Billion Strong

19. Large Group Discussion 1. Questions for the presenters? 2.a) Are you using the CRPD in your HIV work? How? b) What are some of the ways the CRPD could be applied by organizations, governments, employers, etc. in relation to people with HIV – e.g. in employment, housing, health care, education? c) What are the challenges and/or opportunities you or your colleagues have encountered in using the CRPD to protect the rights of people living with HIV and/or HIV related disabling conditions? What can be done to address these issues/improve the situation?

20. Large Group Discussion d) How can the links between HIV and disability be raised within your own groups or organizations? e) What policies and/or initiatives (e.g. disability income or housing support for people with HIV) are you aware of that seek to integrate HIV and disability rights issues? Are they effective? Why or why not? f) What are the most difficult challenges you face in supporting the human rights of people with HIV?

21. Partner Discussion • Discuss with a partner- Is there anything that you have learned today that has surprised you or changed your point of view? Report back to the group • Discuss with partner- Are there any ways in which this discussion will impact your day to day work? What are they? Report back to the group • How would you now rate your knowledge/ understanding of HIV?

22. Thank you! • We thank you for joining us for this important discussion. • For more information on disability and HIV please sign our email contact sheet • Please complete the Session Evaluation Form • Please feel free to take from the resources that are available. • This presentation has been organized by CWGHR (with financial support from the Levi Strauss Foundation) and One Billion Strong

23. For More Information • Please contact: Wendy Porch, Disability Specialist and Education Coordinator wporch@hivandrehab.ca416-513-0440 x 240