An assumption with deadly consequences

Because of the strange sores that had begun to appear on the inside of James’ mouth and on his arms, the 28-year-old finally decided to get tested for HIV. Heterosexual, with more than one girlfriend, and living in a region of southern Africa where almost 40 percent of the population is HIV-positive, James had good reason to worry. He begged a neighbor for a ride into town to avoid walking seven hours to the HIV clinic, and once there he waited three hours for his name to be called. As soon as he stepped to the front desk, however, he was dismissed; the nurse had been watching James while he waited, and right away she told him, “You don’t need a test; you couldn’t possibly have HIV.”

When I spoke with James six months later, the wasting caused by the AIDS virus had already begun to take its toll. Like millions of other Africans, this young man would soon die of AIDS. James was different from them in only one way: James was deaf.

The vulnerability to HIV/AIDS of the world’s 600 million disabled people has been virtually ignored. Conventional wisdom dictates that people with disabilities are unlikely to be at risk—unlikely to have sex, use drugs or be vulnerable to rape. Yet disabled individuals are at equal or increased risk for all known AIDS risk factors. High rates of poverty and illiteracy and the stigma associated with disability only increase these risks for the millions of people who live with a physical disability or psychiatric illness or who are blind, deaf or mentally retarded.

As a researcher on disability issues, I suspected that the impact of AIDS on those with pre-existing disabilities was being overlooked. I was unprepared, however, for how little attention this issue had received. A search of the global literature yielded only 38 short articles on the topic.

I wanted to fill this gap. In 2003, with funding from the World Bank I undertook a global survey on HIV/AIDS and disability. We sent it to 5,500 AIDS researchers, rehabilitation programs and disability advocacy groups worldwide. Responses came from 57 countries.

Worldwide, the data showed, AIDS education and outreach programs are extremely unlikely to reach disabled individuals. AIDS radio campaigns do not educate the deaf. Billboard and newspaper campaigns do not reach the blind. With global literacy rates for disabled adults averaging as low as 3 percent (and around 1 percent for disabled women), many disabled individuals can’t understand complicated AIDS education messages. For those who do seek testing or medical care, accessibility remains a problem: stairs impede entrance to clinics for those with physical mobility problems.

Concerns do not end there. The assumption that people with disabilities are virgins endangers lives in two ways. In dozens of countries, individuals with disabilities are turned away from testing centers by health workers who assume that they are neither sexually active nor HIV-positive. In many countries they are targeted for rape by HIV-positive people who believe in “virgin cleansing.” Even those diagnosed with HIV are at the bottom of lists for medical care and social support; their lives are considered less valuable than those of people without disabilities.

These results carry a message for clinicians worldwide: they must be aware of the risks that their disabled patients face. Yet people with disabilities find that doctors rarely ask them whether they are sexually active or discuss safer sex, even though their risk of physical abuse and rape is significantly higher than for nondisabled people, particularly in group homes or institutions.

The survey results have fostered increased awareness of HIV/AIDS and disability, and over the past year, a consortium of UN agencies has joined the World Bank and disability advocacy organizations to press for inclusion of a disability component in AIDS outreach and education. My colleagues and I have begun a new series of studies to better identify and evaluate programs for disabled individuals at risk. I hope it will make a difference: the need is immediate, and millions of lives are at stake.

For more information, visit http://cira.yale.edu/projects/hivaids-and-disability-global-survey-hivaids-disability.