Left Out Twice: Living with HIV and Disabilities

By Shantha Rau Barriga

WeNews commentator

Wednesday, July 21, 2010

A global conference on AIDS is taking place this week in Vienna, Austria, and Shantha Rau Barriga says the special vulnerabilities of women with disabilities must be kept on the agenda.

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More subtle factors are at work too: in many societies stigmatizing beliefs prevail that women with disabilities are asexual. In high HIV-burden countries, some believe that women with disabilities must therefore be uninfected and myths persist that sex with a virgin can cure AIDS, making women and girls with disabilities targets of sexual violence.

Women with disabilities may also have greater difficulty than other women in negotiating safe sex or insisting that partners wear condoms. They are also less likely to undergo HIV testing because of attitudes of hospital staff and long distances to health centers.

Angela, a young woman with polio who was raped by a man in her community, told me that she has not been tested for HIV because she would have to crawl a long distance and sleep on the road to get to the testing site. Instead, she must, in her own words, "live without knowing."

Invisible in the Field

Women with disabilities living with HIV often find themselves isolated and ignored. People with disabilities are invisible in the HIV field, as shown by the lack of statistics on this issue. Donor organizations need to promote and fund research on the link between HIV and disability. Better data can help identify the challenges people with disabilities face and be used to develop programs to address them.

Governments, U.N. agencies and HIV organizations should actively work with disabled persons' organizations and include people with disabilities in all stages of their programs. A place at the table means that people with disabilities can make their voices heard and get their concerns addressed, honoring the disability community's motto of "Nothing about us, without us."

People with disabilities can be empowered as peer educators to reach their own communities.

For example, in Kenya one HIV organization worked with the deaf community to increase their access to services. The group hired deaf staff members to provide confidential HIV testing and counseling, mobilized and advocated within the deaf community, created accessible educational materials and established post-test support groups for those who are deaf and hard of hearing.

After the program's success, the group broadened the focus to other people with disabilities through a partnership with the Kenya Institute of Special Education. The institute opened an accessible HIV testing and counseling center, as well as mobile services that could travel to people unable to reach the center.

The theme of this week's International AIDS Conference is "Rights Here. Right Now." Let's also make it "Rights Everywhere, for Everyone," so that the lives of women around the world, like Immaculate, Margaret and Angela, can be improved with more inclusive programs and policies.