Mainstreaming of disability concerns in HIV
The concerns of people with disabilities will increasingly be taken seriously and mainstreamed into HIV research, policy and programmes. This engagement will grow because of leadership at the grassroots level by disabled people’s organizations and service delivery organizations, as well as internationally by such champions as AIDS-Free World. We are also likely to see the emergence of charismatic champions, who are people with disabilities and also live with HIV.
Despite momentum in this direction, a key obstacle to progress will be discrimination from people living with HIV toward the disability community, and vice versa. This cross-discrimination has its origin in people living with HIV not wanting to be seen as disabled, and people with disabilities not wanting to be seen as sick [21]. Difficult questions regarding mainstreaming HIV as a disability may arise for countries that have disability grant and benefit systems that were previously closed to people living with HIV. Similarly, interpreting HIV as a disability has implications for disability statistics, and it may be feared that the political power of HIV will steal attention and support from other disability issues.
Returning to the framework of the International AIDS Conferences, however, there are a series of positive firsts that are likely to unfold at the XVIII International AIDS Conference in Vienna in 2010. First, the conference will see new, high-quality empirical research on disability and HIV.
Second, disability will not only have its own session, but will be mainstreamed across the programme. For example, we may see a presentation on disability and sexual exploitation nested within a session on sexual abuse and HIV. Third, disabled people’s organizations will have a significant presence in the community village, where much advocacy and information exchange takes place. Finally, the Vienna gathering will be the most accessible and inclusive of all International AIDS Conferences to date.
Conclusion
This article has attempted to chart of the fields of HIV and disability over time, in both their parallel paths and, finally, in their more integrated form. This history has drawn heavily on experiences within southern Africa, Europe and Canada, with acknowledgement that there must be other aspects to the histories that have not been represented. It is our hope that this seminal effort will spur others around the world to add to this history, both by sharing experiences to date and by taking up concern with HIV and disability issues as we move forward together.
Appendix 1
Examples of research on disability and HIV presented at major HIV conferences in 2008
• Bisol showed that risk of HIV is higher for deaf people in Brazil who have lower levels of HIV knowledge, less formal school education, and higher rates of sexual abuse. (WEAD0204. Mexico 2008).
• Touko reported prevalence rates that demonstrated deaf people in Cameroon are as likely to get infected with HIV as their non-disabled peers. (WEAD0205, Mexico 2008)
• Monaghan reported on a US study that found VCT uptake among the deaf was lower and that HIV infection was higher than the national average. (Mexico 2008)
• Henderson presented results from the Steadman Group Study on HIV and AIDS Knowledge, Attitude, Practice and Accessibility with a deaf population in Kenya. (74, Dakar 2008)
• Vidal reported on neurological disabilities in AIDS patients. (SAT session, Mexico 2008)
• Guimaraes described risk behaviours among patients with chronic mental illness in a national multicentre study in Brazil. (WEDA0202, Mexico 2008)
• Hanass-Hancock reported on a study examining the interweaving patterns of disability, gender and HIV and AIDS, which highlighted the problem of sexual abuse and exploitation among people with disabilities in South Africa. (WEAD0203, Mexico 2008)
• Hanass-Hancock presented a systematic literature review on HIV and disability in Africa. (76, Dakar 2008)
Jill Hanass-Hancock and Stephanie A Nixon
Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu-Natal, South Africa
Department of Physical Therapy, University of Toronto, Canada, and Research Associate, HEARD, University of KwaZulu-Natal, South Africa
Journal of the International AIDS Society 2009, 2:3 doi:10.1186/1758-2652-2-3
Jill Hanass-Hancock (.(JavaScript must be enabled to view this email address))
Stephanie A Nixon (.(JavaScript must be enabled to view this email address))
References
1. United Nations: UN convention on the rights of persons with disabilities. 2008. [http://www.un.org/disabilities/default.asp?id=150]
2. Brashers DE, Neidig JL, Cardillo LW, Dobbs LK, Russell JA, Haas SM: “In an important way, I did die’: uncertainty and revival in persons living with HIV or AIDS. AIDS Care 1999, 11:201-219.
3. Nokes KM: Revisiting how the chronic illness trajectory framework can be applied to persons living with HIV/AIDS. Scholarly Inquiry for Nursing Practice 1998, 12:27-31.
4. Philips A, O’Dell MW, Mills B: Comprehensive guide for the care of persons with HIV disease: Module 7-HIV rehabilitation services. Ottawa, Canada: Health Canada; 1998.
5. World Health Organization (WHO): International Classification of Functioning Disability and Health Geneva: WHO, [http://www.who.int/classifications/icf/en/] 2001.
6. Nixon S, Cott C: Shifting perspectives: reconceptualizing HIV disease in a rehabilitation framework. Physiotherapy Canada 2000, 52:189–197.
7. Rusch M, Nixon S, Schilder A, Braitstain P, Chan K, Hogg R: Impairments, activity limitations and participation restrictions: Prevalence among persons living with HIV/AIDS in British Columbia Health and Quality of Life Outcomes 2004, 2:46.
8. The Cross Cluster Initiative on Home-Based Long-Term Care, The Department of HIV/AIDS and Family and Community Health of the World Health Organisation: Community home-based care in resource-limited settings. A framework for action. World Health Organisation, Geneva; 2002.
9. Worthington C, Myers T, O’Brien K, Nixon S, Cockerill R: Rehabilitation in HIV/AIDS: development of an expanded conceptual framework. AIDS Patient Care and STDs 2005, 19:258-271.
10. Myezwa H, Stewart A, Musenge E, Nesara P: Assessment of HIV-positive in-patients using the International Classification of Functioning, Disability and Health (ICF), at Chris Hani Baragwanath Hospital, Johannesburg. African Journal of AIDS Research 2009, 8:93-106.
11. Canadian Working Group on HIV and Rehabilitation: Resources on Episodic Disability [http://www.hivandrehab.ca/EN/resources/episodic_disabilities.php]
12. O’Brien K, Wilkins A, Zack E, Solomon P: Scoping the field: Identifying key research priorities in HIV and rehabilitation. AIDS and behavior. March 2009. DOI 10.1007/s10461-009-9528-z. 2009.
13. O’Brien K, Bayoumi AM, Strike C, Young N, Davis AM: Exploring disability from the perspective of adults living with HIV/AIDS: Development of a conceptual framework. Health and Quality of Life Outcomes 2008, 6:76.
14. Ernst J, Hufnagle KS, Shippy A: HIV and Older Adults. New York: AIDS Community Research Initiative of America; 2008.
15. Booysen F: Social grants as safety nets for HIV/AIDS-affected households in South Africa1(1). SAHARA Journal 2004, 1:45-56.
Full references
The complete article is available as a provisional PDF.