Imagine going to a clinic to be tested for HIV, the virus that causes AIDS, if you are deaf and cannot read or use formal sign language. The doctor gives a "thumbs-up" sign. Does it mean "yes, you have HIV" or "yes, you are OK"
This happened in Mozambique, and the patient went home not knowing his HIV status, said Rosangela Berman Bieler, a Brazilian journalist who is among a growing number of health activists trying to give persons with disabilities better access to HIV/AIDS services. Her group, the Inter-American Institute on Disability and Inclusive Development ( IIDI ), works with governments in Latin America, the Caribbean and Portuguese-speaking Africa. Berman Bieler spoke December 3 at a conference chaired by Judith Heumann, the State Department's adviser on disability rights.
About 650 million people, or 10 percent of the world's population, live with disabilities. Most of these people live in developing countries. They are at risk of exposure to HIV but are often left out of prevention and treatment efforts, according to a 2004 World Bank/Yale University survey. Information may not be designed for people with hearing or sight impairments, and health clinics often are not wheelchair-accessible.
A few years ago "nobody would pay attention," said Berman Bieler, but now more governments and organizations such as the World Bank are recognizing that the issues of disabilities and HIV/AIDS intersect.
"Disability is really out there now as part of the whole discussion about HIV/AIDS," Berman Bieler told the conference. But advocacy groups need to "sit at the negotiating table and be part of the solution." The issue of disability must be part of national HIV/AIDS strategies, she said.
Agnes Atim of Uganda, director of the National Community of Women Living with HIV/AIDS ( NACWOLA ), told the conference of a Ugandan woman who was HIV-positive and partially deaf and blind, who had to walk three days to the nearest health center. Health workers could not communicate with her, and the woman had to return home without medical treatment.
"We are talking about barriers and equality," Atim said. "Where is the equality"
The World Bank/Yale survey found that people with disabilities engage in behaviors that carry a risk of HIV infection - unprotected sexual activity or intravenous drug use - at rates similar to those of the rest of the population. They are more vulnerable to violence or rape but less likely to receive treatment, even though rape can expose them to HIV/AIDS. Atim said that in Uganda many disabled women do not know their rights, and so in addition to looking at barriers to services, NACWOLA seeks justice for women who are victims of sexual violence.
Countries that sign the United Nations Convention on the Rights of Persons with Disabilities - more than 145 countries have - must address discrimination, lack of accessible services, and other challenges facing disabled people.
DELIVERING THE MESSAGE
This poster, which says "AIDS does not discriminate. All of us have a role in prevention," is part of an information campaign in Central America designed to show that people with disabilities should not be excluded from HIV prevention and care efforts. It was sponsored by the World Bank and regional organizations.
This poster, "AIDS does not discriminate. All of us have a role in prevention," is part of a campaign in Central America intended to include persons with disabilities. IIDI helped launch an AIDS prevention campaign in six Central American countries in 2009 that was supported by the World Bank and regional organizations. The campaign showed, "in a visual, public way, that people with disabilities should not be excluded from HIV prevention and care efforts," Berman Bieler said.
Signs announced ( in Spanish ) that "AIDS does not discriminate. All of us have a role in prevention." The signs included people with disabilities ( a man in a wheelchair, a woman with a service dog, people using sign language ). The campaign also developed posters in sign language stating how HIV is transmitted and how to use condoms. It reached blind people using radio spots and audio files on the Internet, and it created guides for health professionals on dealing with disabilities.
"For the first time on the streets in Central America, there were signs raising the issue of disability and relating it to sexuality and HIV," Berman Bieler said. "It got a lot of attention in the media."
"The message is exactly the same for everybody," Berman Bieler said. "We're just talking about putting it in a different format." IIDI also advocates for universal design in clinics, such as ramps and railings that make health facilities accessible to everyone.
Heumann's office is working with other parts of the State Department and the U.S. Agency for International Development to include disabilities in discussions of HIV/AIDS and development. And at the December 3 conference, she encouraged disability advocates to press for giving disability a higher profile at the next international HIV/AIDS conference in Washington in 2012.
Atim urged advocacy groups to work together. "We've seen our disability movement, our women's movement, our HIV movement all doing a great job in our own different corners," she said. "But I think it's high time that we came together."
For more information, see the Facebook page for Judith Heumann, State Department special adviser on international disability rights.
Disability and HIV Policy Brief ( PDF, 216KB ) by UNAIDS, World Health Organization, is available on the U.N. website.
The Yale University/World Bank study, HIV/AIDS and Disability Global Survey, is available through the Yale website.
World Bank guidelines for including people with disabilities in HIV/AIDS outreach efforts, and a fact sheet on reaching disabled persons in Africa ( PDF, 665KB ) at risk for HIV/AIDS are available on the World Bank website.
More information on the United Nations Convention on the Rights of Persons with Disabilities is available on the U.N. website.
(This is a product of the Bureau of International Information Programs, U.S. Department of State. Web site: www.america.gov)
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