People with Disabilities Demand HIV Prevention & Treatment Worldwide
August 7, 2008
Today people living with disabilities -- including people living with HIV/AIDS and disabilities -- and allies will convene at an historic AIDS2008 satellite session to demand that international AIDS community end decades of neglect of this population, who lives at heightened risk of HIV acquisition and morbidity. AIDS-Free World and Disabled Peoples' International will call for immediate inclusion in HIV/AIDS research agendas, data collection and programming for prevention, treatment and care.
At an August 4 press conference organized by AIDS-Free World and Disabled People's International, activists and researchers laid out the context that makes people living with disabilities especially vulnerable to HIV. At least 10% of the world's population - 650 Million people -- has a disability affecting their daily lives. Globally, most people with disabilities face poverty, stigma, social isolation and marginalization, and 80% dwell in rural areas of developing countries.
Though researchers speculate that people living with disabilities are at least twice as likely to acquire HIV, they are utterly excluded from data collection and research and are completely absent from AIDS statistical data. And, once persons with disabilities become HIV-positive, they are much less likely to receive the medical and social support they need.
Yetnebersh Nigussie, an Ethiopian human rights lawyer and AIDS activist who lost her vision in childhood due to meningitis, decried the absence HIV/AIDS data collection for disabled persons as an issue of human rights. "We have a right to be researched and to participate -- and not to do so is a human rights violation. Inclusion in HIV/AIDS research should not be based on goodwill -- it is a right."
Researcher Nora Groce of University College (London) -- who has generated the bulk of research on the intersection of HIV and disability -- noted that the exclusion of people with disabilities from AIDS research, policies and programming "relegates 10% of the world's population to the far margins of the AIDS response." Since resources for prevention and treatment are targeted to people with evidence documenting need, consideration of people with disabilities cannot occur in the global health dialog without data.
Dr. Groce pointed out that we do not have to wait to develop and fund stand-alone research protocols. She called for the immediate inclusion of disability components to existing studies already underway.
Women, Infantilization of People with Disabilities and HIV
Women living with disabilities are particularly vulnerable to HIV acquisition. A perfect storm of factors produce this vulnerably, and chief among them is the popular assumption that disabled women are not sexually active and will not marry. Also, women with disabilities are denied educational opportunities, have abysmal rates of literacy (only one percent!) and are much more likely to experience sexual abuse and rape.
Winstone Zulu, a prominent Zambian AIDS activist, PLWHA and person living with disabilities, learned of his HIV status in 1999 after surviving childhood polio, adult TB and malaria. Mr. Zulu described patterns of chronic neglect and active discrimination rendering people with disabilities invisible in the HIV pandemic and global health initiatives. "People ignore you. They think all parts of your body are effected by one's disability. " He added that disabled people experience a total denial of their sexuality. "Just as young people experience a denial of sexuality, people with disabilities do indeed have sex -- but people ask, 'how can you get to the bed?'"
The satellite session, Double Discrimination: HIV/AIDS and Disabilities, will be moderated by Avi Lewis from 6:30-8:30 pm in Session Room 5. Panelists and audience members will discuss a range of topics in an interactive, "town hall" format, including: the intersection of AIDS and disability worldwide, the barriers to prevention, treatment and care for people with disabilities, the particular vulnerability of women with disabilities, neglect and marginalization by the global AIDS movement of people with disabilities, and efforts to end exclusion of people with disabilities from AIDS services.
This article was provided by Community HIV/AIDS Mobilization Project.