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“The challenge to us is not just the number of people left behind; it is who they are and why they are left behind.”
At the opening of the 20th International AIDS Conference in Melbourne, Australian Justice Michael Kirby spoke about the progress made in the fight against HIV, but also about the people who continue to be left out, including the one billion people with disabilities around the world.
Over the past year, working in Zambia, I have seen both the progress and the exclusion.
Yvone, a young woman in a wheelchair, living in a compound in Lusaka, Zambia, told me that when she went for HIV testing, “You are looked up and down, people say, ‘Why should you be in the line? Who could give you HIV?’ They don’t expect disabled women to be sexually active.” Local health facilities don’t have ramps, wide doorways and accessible toilets, making it difficult for her to get even basic healthcare services.
Yvone is one of the almost two million people in Zambia have disabilities, and who face significant barriers in accessing HIV prevention, testing and treatment services. People with physical, intellectual, psychosocial or sensory disabilities face pervasive stigma and discrimination in communities and healthcare settings because of stereotypical views that they do not have the capacity, desire or right to lead full sexual and reproductive lives. Staff in health facilities are not able to communicate test results or provide counseling for some people with disabilities, especially deaf people. Due to communication barriers and notions about their capacity to consent, people with disabilities are not always assured of confidential HIV services with full and informed consent.
Yvone and other people with disabilities are often invisible in the fight against HIV as a result of social isolation and the perception that they are less vulnerable to the disease.
Winston Zulu understood that invisibility. Zulu, was a heroic HIV and tuberculosis activist with polio from Zambia, who died in 2011 and to whom our recent report “We Are Also Dying of AIDS”: Barriers to HIV Services and Treatment for Persons with Disabilities in Zambia” is dedicated. He urged world leaders to recognize that people with disabilities “need to be a part of the fight against HIV, too.” Zulu understood, far before many others, that if people with disabilities are not counted, renewed commitments toward HIV elimination and universal coverage of HIV services will become hollow promises.