People with disabilities and experiences with HIV
The response to HIV and AIDS can largely be characterized as the identification and targeting of key populations that are believed to be at increased risk of exposure to HIV. These populations of people are now well known, including, depending on region and epidemic, migrant workers, sex workers, men who have sex with men, injecting drug users, and indigenous people. Even in generalized epidemics, as seen in southern Africa, prevention and care efforts have focused, in part, on those perceived to be most at risk, such as youth in resource-poor settings.
People with disabilities have for a long time been excluded from any discussion of key populations at increased risk for HIV. However, the logic underpinning this exclusion has been flawed and in their recent policy brief UNAIDS acknowledges people with disabilities as a key population at higher risk of exposure to HIV [21].
Myths about people with disabilities are debunked
First, the assumption that people with disabilities comprise only a small minority is incorrect. The World Health Organization estimates that one in 10 people in the world lives with some sort of disability [22]. However, this 10% is not distributed evenly around the world; as is the pattern with many challenges, the prevalence of disabilities in resource-limited settings outweighs that of more wealthy countries.
As such, one can assume that more than 10% of the population has a disability in places like southern Africa, where HIV prevalence is also at its highest.
Second, the abiding assumption that people with disabilities are at little or no risk for HIV was disproved in the Global Survey on HIV/AIDS and Disability, a seminal World Bank study conducted by Nora Groce in 2004 [23]. Data collected from organizations working with people with disabilities in 57 countries across four continents concluded that almost all known risk factors for HIV and AIDS are increased for people with disabilities [24]. The eight areas of vulnerability identified in the survey continue to be proven through additional empirical research.
The following section highlights evidence supporting our understanding of why people with disabilities are at increased risk for HIV.
1. Poverty: People with disabilities are often the poorest members of their communities, and the World Bank estimates that persons with disabilities may account for 20% of the poorest citizens in the world [23-25].
2. Lack of education: People with disabilities are typically excluded from school because they are not considered in need of education, are assumed to be a distraction in class, or are believed to be incapable of learning [23, 26]. Even when in school, children with disabilities are less likely to receive science and health education and more likely to be excused from sex education courses [24, 27-29].
3. Lack of HIV and “safer sex” information resources: There is a pervasive misperception that people with disabilities are asexual. Although adolescents with disabilities are generally more socially isolated, they have been shown to be as sexually experienced as their able-bodied peers [23, 30, 31]. Youth with disabilities have also reported double the rates of ever having had a sexually transmitted disease or being pregnant than their able-bodied counterparts [32]. A systematic review has also revealed that people with disabilities in Africa are as sexually active as the general population, yet sexuality is still not addressed [33]. Reproductive health awareness-raising programmes are known to frequently exclude people with disabilities [34-37]. Individuals with disabilities are rarely the targets of HIV interventions designed specifically to address their particular prevention needs [38] and are less likely to have access to condoms or other prevention methods [26].
4. Elevated risk for violence and rape, and lack of legal protection: Abuse among women with disabilities ranges from double to quadruple the rate found among women in general [23, 24, 39-42]. Approximately 80% to 90% of persons with disabilities are victims of some type of abuse at some point in their lives [38]. Adult women with a disability are more likely than non-disabled females to be physically or sexually assaulted by their partners and women with disabilities are more likely to be subjected to serious violence [32]. However, legal protection is still lacking [43-47].
5. Substance abuse: Drug abuse among select groups of people with disabilities is reported to be significantly higher than the general population [26, 28]. Substance use is associated with elevated sexual risk taking [23, 48] and may also lead to sharing injecting equipment, resulting in increased vulnerability to HIV.
6. Vulnerability of disabled orphans: Children with disabilities who are orphaned have been found to be particularly vulnerable as they are losing a parent and are less likely to receive the same care and support as their non-disabled orphaned peers [24].
7. Precarious access to affordable health care: Health care providers have been reported to routinely deny people with disabilities access to HIV testing and HIV and AIDS care [24].
Lower priority is often placed on individuals with disabilities when scarce HIV medications and services are being rationed [23, 26]. Furthermore, people with disabilities face barriers to accessing any form of health care services (e.g., because clinics are missing ramps and Braille or sign interpreters), which can result in other sexually transmitted infections being undiagnosed, further increasing risk of HIV infection.
8. Stigma: Stigma has been associated with HIV, as well as with disability. People with disabilities who become HIV positive may become doubly stigmatised [24]. A further layer of discrimination may also be experienced by people who are not heterosexual [49].
It is now understood that people with disabilities are at least as much, if not more, at risk of HIV infection than the general public. However, studies evaluating HIV prevalence rates among people with disabilities are only now beginning to emerge. The first prevalence studies were conducted with deaf populations and demonstrated that deaf people are at least as likely [50, 51], if not twice as likely [52], to become HIV positive as non-deaf controls. Although the samples were relatively small, the results provide important early verification of arguments advanced in the Global Survey on HIV/AIDS and Disability.
With these myths debunked, the field of disability and HIV is now emerging. Before looking further ahead, however, we will glance backwards to reflect on the evolution of this arm of the HIV and disability story.
Jill Hanass-Hancock and Stephanie A Nixon
Health Economics and HIV/AIDS Research Division (HEARD), University of KwaZulu-Natal, South Africa
Department of Physical Therapy, University of Toronto, Canada, and Research Associate, HEARD, University of KwaZulu-Natal, South Africa
Journal of the International AIDS Society 2009, 2:3 doi:10.1186/1758-2652-2-3
Jill Hanass-Hancock (.(JavaScript must be enabled to view this email address))
Stephanie A Nixon (.(JavaScript must be enabled to view this email address))
References
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Full references
The complete article is available as a provisional PDF.