NEW YORK — “People look at disabled people and think they don’t have sex. We have sex. And we can be infected with HIV.”
John Meletse is a deaf, gay, and HIV-positive South African. When he went to get tested for HIV in 2001, the clinic staff couldn’t communicate in sign language. The doctor took his blood, showed him a piece of paper that read, “YOU ARE HIV POSITIVE,” and then asked him to leave. He was shocked by this news, and struggled to understand what this meant for his life and how to cope.
Meletse’s case is not unique. Over a billion people — 15 percent of the world’s population — live with a disability. These numbers should confer power and authority in decision making about all aspects of their lives, including to HIV and AIDS. Yet people with disabilities have been largely ignored in the global response to HIV.
These issues take on special meaning this time of year with the annual World AIDS Day on Dec. 1, followed on Dec. 3 by the International Day of People with Disabilities.
Barriers to HIV services begin early. Worldwide, children with disabilities account for at least one-third of those out of school — schools are physically inaccessible, teachers are inadequately trained, or children are denied admission to neighborhood schools.
Sexual and reproductive health education is often provided in school settings, so many children with disabilities are effectively excluded. Low literacy levels, coupled with a lack of information in accessible formats, means that people with disabilities are denied information about HIV prevention, care, treatment and support.
Some can’t access clinics or other HIV services. A woman named Charity was injured by a landmine in northern Uganda and cannot walk. She told Human Rights Watch she did not know her HIV status: “I would have to crawl a long distance to get tested for HIV and sleep on the road on the way there, so I just live without knowing.”
People with disabilities are also denied information and education about sex and about HIV prevention because they are assumed to be asexual.
Winstone Zulu, a Zambian activist who had polio as a child, used crutches or a wheelchair to get around. He was the first Zambian to publicly acknowledge his HIV status, and spent much of his life advocating worldwide for the rights of people with disabilities.
In an interview with Human Rights Watch in 2011, he said: “When information is being distributed in the community, [people with disabilities] are bypassed because everyone thinks, ‘Why? Why give information about family planning to people who do not have sex anyway . . . or who shouldn’t have sex?”
Once, a woman at an AIDS conference asked him: “How did you get it?” He said, “Sexually.” “She looked at me up and down and said, ‘But how?’”
Women with disabilities — like women living with HIV — have told Human Rights Watch that health care workers considered them unfit to have children, and studies throughout the world show that an alarming number of women and girls with disabilities have been sterilized without their knowledge or informed consent.
Human Rights Watch documented cases in Argentina and northern Uganda in which hospital staff asked women in wheelchairs how they could even have children, and questioned a blind woman’s ability to care for her child.
HIV testing and counseling is supposed to be confidential. But if you have a support person with you to help with translation, it won’t be. So many deaf people avoid services altogether.
People with disabilities face a high risk of violence, including sexual abuse. And they may have no one to defend them. Police or social services may be physically inaccessible, or lack capacity to communicate with people with visual or hearing disabilities. Caregivers sometimes are the abusers. People with disabilities who are gay, lesbian, bisexual or transgender; who use drugs; who are incarcerated; or who are sex workers may face additional discrimination or abuse.
Things have begun to change.
The UN General Assembly in 2011 called on governments to ensure that HIV programs were inclusive and accessible to people with disabilities. In 2012, 71 percent of countries reported that their national AIDS strategies integrated efforts to address people with disabilities, though the extent to which this actually happens is unclear.
Maletse is now a leading advocate for inclusion of people with disabilities in in HIV efforts. And groups of people with disabilities and mainstream human rights organizations have played a key role in promoting inclusive HIV programs.
But we still have a long way to go to “get to zero.” Governments and civil society organizations need to collaborate with people with disabilities to develop strategies for access to comprehensive HIV and information and services. This is not just a good practice: It is a requirement under the Convention on the Rights of Persons with Disabilities. And it is the only way to make progress toward ending HIV and AIDS.