HIV/AIDS and People With Disability
Nora Ellen Groce, Ph.D Yale University
The Lancet, vol. 361, April 26, 2003, p. 1401-1402.
Although AIDS researchers have studied the disabling effects of HIV/AIDS on previously healthy people, little attention has been given to the risk of HIV/AIDS for individuals who have a physical, sensory, intellectual, or mental health disability before becoming infected. It is commonly assumed that disabled individuals are not at risk. They are incorrectly thought to be sexually inactive, unlikely to use drugs, and at less risk for violence or rape than their non-disabled peers. Yet a growing body of research indicates that they are actually at increased risk for every known risk factor for HIV/AIDS. For example, in a recent article, S Blumberg and W Dickey (1) analyse findings from the 1999 US National Health Interview Survey and show that adults with mental health disorders are more likely to report a medium or high chance of becoming infected with HIV, are more likely to be tested for HIV infection, and are more likely to expect to be tested within the next 12 months than are members of the general population.
Such findings should not be unexpected for individuals with disability. There are significant risk factors for disabled populations around the globe. For example, despite the assumption that disabled people are sexually inactive, those with disability-and disabled women in particular-are likely to have more sexual partners than their non-disabled peers. Extreme poverty and social sanctions against marrying a disabled person mean that they are likely to become involved in a series of unstable relationships.(2) Disabled individuals (both male and female) around the world are more likely to be victims of sexual abuse and rape than their non-disabled peers. Factors such as increased physical vulnerability, the need for attendant care, life in institutions, and the almost universal belief that disabled people cannot be a reliable witness on their own behalf make them targets for predators.(3,4) In cultures in which it is believed that HIV-positive individuals can rid themselves of the virus by having sex with virgins, there has been a significant rise in rape of disabled children and adults. Assumed to be virgins, they are specifically targeted.(5)
In some countries, parents of intellectually disabled children now report rape as their leading concern for their children's current and future well-being. Bisexuality and homosexuality have been reported among deaf and intellectually disabled adults, while awareness of HIV/AIDS and knowledge of HIV prevention is low in both these groups.(6) Individuals with disability are at increased risk of substance abuse and less likely to have access to interventions. It is estimated that 30% of all street children have some type of disability and these young people are rarely reached by safe sex campaigns.(5) Furthermore, literacy rates for disabled individuals are exceptionally low (one estimate cites an adult literacy rate of only 3% globally (7), thus making communication of messages about HIV/AIDS all the more difficult. Sex education programmes for those with disability are rare.(8-10) and almost no general campaigns about HIV/AIDS target (or include) disabled populations.(11) Indeed, where AIDS campaigns are on radio or television, groups such as the deaf and the blind are at a distinct disadvantage.
The future for disabled individuals who become HIV positive is equally grim. Although little is known about access to HIV/AIDS care, disabled citizens receive far fewer general health-services than others.(12,13) Indeed, care is not only often too expensive for impoverished disabled persons, but it can also be physically inaccessible-eg, clinic steps bar the way for a wheelchair user and consultation with a physician without a sign-language interpreter is meaningless for most deaf persons.
Currently, little is known about HIV/AIDS and disability. Only a few studies have estimated prevalence (14,15) and no prevalence data exist for any disabled populations from sub- Saharan Africa, Asia, Europe, Central and South America, or the Caribbean. However, a growing number of stories from disability advocates worldwide point to significant unreported rates of infection, disease, and death.(16) Over the past decade there have be a handful of articles on HIV/AIDS pilot programmes and interventions for intellectually disabled adults or services for deaf adolescents. (17,18) Many of these projects are innovative but almost all are small and underfunded. There is a real need to understand the issue of HIV/AIDS in disabled people in global terms and to design and implement programmes and policy in a more coherent and comprehensive manner. The roughly 600 million individuals who live with a disability are among the poorest, least educated, and most marginalised of all the world's peoples. They are at serious risk of HIV/AIDS and attention needs to be focused on them. In January, 2003, the World Bank and Yale University, started a global survey on HIV/AIDS and disability that seeks to better understand variables of the current epidemic as well as to identify best-practice interventions and grassroots efforts.
Nora Ellen Groce
1 Blumberg SJ, Dickey WC. Prevalence of HIV risk behaviors, risk perceptions, and testing among US adults with mental disorders. J Acquir Immune Defic Syndr 2003; 32: 77-79.
2 Economic and Social Commission for Asia and the Pacific. Hidden sisters: women and girls with disabilities in the Asian Pacific region. New York: United Nations, 1995.
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5 UNICEF. Global survey of adolescents with disability: an overview of young people living with disabilities: their needs and their rights. New York: UNICEF Inter-Divisional Working Group on Young People, Programme Division, 1999.
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10 Robertson P, Bhate S, Bhate M. AIDS: education and adults with a mental handicap. J Mental Def Res 1991; 35: 475-80.
11 UNAIDS. Report on the global HIV/AIDS epidemic 2002. New York: Joint UN Programme on HIV/AIDS, 2002.
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13 Lisher D, Richardson M, Levine P, Patrick D. Access to primary health care among persons with disabilities in rural areas: a summary of the literature. Rural J Health 1996; 12: 45-53.
14 Van Biema D. AIDS and the deaf. Time Magazine 1994; 143: 76-78.
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17 Gaskins S. Special population: HIV/AIDS among the deaf and hard of hearing. J Assoc Nurses AIDS Care 1999; 10: 75-77. 18 McGillivray J. Level of knowledge and risk of contracting HIV/AIDS amongst young adults with mild/moderate intellectual disability. J Appl Res Intellect Disabil 1999; 12: 113-26.