Commentary

Left Out Twice: Living with HIV and Disabilities

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.

Shantha Rau Barriga (WOMENSENEWS)--"I'm a woman with a disability. I am HIV-positive and I am on ARVs (antiretroviral drugs). My life is very hard."

These were the first words Immaculate, a 52-year-old landmine survivor in northern Uganda, said to me when I met her in May. "It took long for me to declare my status. I felt I should just die," she said.

Margaret is another Ugandan with HIV who also has an amputated leg from a landmine accident.

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"I cannot bathe near others," she told me. "My neighbors think that the water that comes off of me has HIV in it. They say I will get the community sick if they touch the water. There has been HIV sensitization in the community but there is no real change in attitudes."

As government and U.N. leaders, HIV advocates and members of civil society gather in Vienna, Austria, this week for the International AIDS Conference, the needs of women such as Immaculate and Margaret must be given priority in the design, implementation and funding of HIV programs and policies.

At least 10 percent of the world's population--as many as 660 million people--have a disability, according to the United Nations.

People with disabilities have HIV infection rates up to three times higher than people without disabilities because of their risk of physical abuse, isolation, general poverty and lack of access to services and information, found a study by the World Bank and Yale University in 2004.

Yet few HIV programs are designed to serve people with disabilities and few disability programs incorporate HIV services.

Discrimination on Multiple Fronts

People with disabilities and HIV face discrimination on many fronts; women with disabilities are especially vulnerable to HIV infection.

In many countries, women with disabilities are more likely to be sexually abused--men prey on them since they are perceived as less able to defend themselves or demand justice for sexual violence. Unfortunately, in many cases, these suppositions are true. Too often the barriers to justice faced by all women over sexual violence are even higher for women with disabilities.

Social stigma and the requirement for unwilling doctors to sign police complaints conspire to deter women with disabilities from pursuing these cases.

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.

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Shantha Rau Barriga is a researcher and advocate for health and human rights at Human Rights Watch.

For more information:

-Watch the Web cast of a special session on HIV and disability during the International AIDS Conference::
http://globalhealth.kff.org/AIDS2010

Disability and AIDS, Two Years Later

Panel: Thursday July 22, 4:30-6:00 p.m.

 
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