HIV/AIDS and disability : an exploration of organizations' responses to HIV/AIDS as it affects people with disabilities
Rohleder, Poul Andrew
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HIV/AIDS has emerged as one of the biggest epidemics in modern human history, and is perhaps the most researched and written about epidemic. Southern Africa is at the epicentre of the global HIV/AIDS epidemic, with almost one third of the world’s HIVpositive population living here. HIV is known to affect predominantly vulnerable populations; thus it is surprising that persons with disabilities have been largely overlooked. Little is known about how HIV/AIDS affects persons with disabilities in South Africa. This dissertation, therefore, aims to explore the extent to which organizations and schools working with persons with disabilities are dealing with HIV/AIDS, and how they are dealing with it. The study made use of an integration of quantitative and qualitative research methods. An existing survey questionnaire used in the World Bank/Yale University Global Survey on HIV/AIDS and Disability was used, with permission, as the survey instrument in a national survey of disability organizations and special needs (LSEN) schools in South Africa. The survey was distributed by post and email to 601 organizations and schools across the country, in all nine provinces. Various contacts and postings of the survey were made to organizations and schools, in an attempt to improve response rates. The response rate from national disability organizations was 57%, while the response rate for regional and local organizations and schools was very poor, with an overall response rate of 18%. The sample, however, was representative of the population. The results of the survey indicate a high level of concern about HIV/AIDS as a risk for persons with disabilities. The majority of organizations and schools were involved in providing HIV prevention education. However, most organizations and schools felt that persons with disabilities were excluded from general HIV prevention campaigns, and were thus receiving less information. A second study, using qualitative research methods, used case studies of three organizations/schools to explore more in-depth staff difficulties, challenges and particularly anxieties related to dealing with sex, sexuality and HIV among persons with disabilities. The case studies were analysed from a psychosocial framework, using social constructionist theory with psychoanalytic theory, to explore how social discourses about HIV and disabilities are internalized by staff. It is theorized that people draw on particular social discourses, in this case about HIV and disability, as a defence against threats to the self. Texts were analysed using discourse analysis to identify social discourses. A further analytic layer used psychoanalytic theory to identify unconscious communication of emotions and defence mechanisms. The case studies found that staff have considerable anxiety with regards raising issues of sex, sexuality and HIV with persons with disabilities. Staff from all three organizations were varyingly anxious about needing to protect the people they work with from harm. Disabled people were constructed as innocent, vulnerable, and needing protection. In other cases disabled people were constructed as deviant and their behaviour needing to be controlled. The use of an integration of qualitative and quantitative methods is useful, in allowing to explore more in-depth the lived experience of research participants. While the survey indicated that organizations were providing HIV prevention education, the case studies revealed much anxiety about this, and in some cases education was partly avoided. The results also suggest that HIV prevention education may be used in a way to control and restrict disabled people’s sexual expression, using a demonizing discourse about sex as dangerous and in some circumstances immoral. This may be done in an absence of a discourse of pleasure, where disabled people may be empowered to have fulfilling sexual lives. The study also highlights sexual abuse and rape of persons with disabilities as a serious issue. The dissertation ends with recommendations for further research, including exploring the experience of disabled people themselves, and the need to address the silence around sexual abuse and rape of persons with disabilities.