HIV/AIDS and disability : an exploration of organizations' responses to HIV/AIDS as it affects people with disabilities

[摘要] HIV/AIDS has emerged as one of the biggest epidemics in modern human history, and isperhaps the most researched and written about epidemic. Southern Africa is at theepicentre of the global HIV/AIDS epidemic, with almost one third of the world's HIVpositivepopulation living here. HIV is known to affect predominantly vulnerablepopulations; thus it is surprising that persons with disabilities have been largelyoverlooked. Little is known about how HIV/AIDS affects persons with disabilities inSouth Africa. This dissertation, therefore, aims to explore the extent to whichorganizations and schools working with persons with disabilities are dealing withHIV/AIDS, and how they are dealing with it.The study made use of an integration of quantitative and qualitative research methods. Anexisting survey questionnaire used in the World Bank/Yale University Global Survey onHIV/AIDS and Disability was used, with permission, as the survey instrument in anational survey of disability organizations and special needs (LSEN) schools in SouthAfrica. The survey was distributed by post and email to 601 organizations and schoolsacross the country, in all nine provinces. Various contacts and postings of the surveywere made to organizations and schools, in an attempt to improve response rates. Theresponse rate from national disability organizations was 57%, while the response rate forregional and local organizations and schools was very poor, with an overall response rateof 18%. The sample, however, was representative of the population. The results of thesurvey indicate a high level of concern about HIV/AIDS as a risk for persons withdisabilities. The majority of organizations and schools were involved in providing HIVprevention education. However, most organizations and schools felt that persons withdisabilities were excluded from general HIV prevention campaigns, and were thusreceiving less information.A second study, using qualitative research methods, used case studies of threeorganizations/schools to explore more in-depth staff difficulties, challenges andparticularly anxieties related to dealing with sex, sexuality and HIV among persons with disabilities. The case studies were analysed from a psychosocial framework, using socialconstructionist theory with psychoanalytic theory, to explore how social discourses aboutHIV and disabilities are internalized by staff. It is theorized that people draw onparticular social discourses, in this case about HIV and disability, as a defence againstthreats to the self. Texts were analysed using discourse analysis to identify socialdiscourses. A further analytic layer used psychoanalytic theory to identify unconsciouscommunication of emotions and defence mechanisms. The case studies found that staffhave considerable anxiety with regards raising issues of sex, sexuality and HIV withpersons with disabilities. Staff from all three organizations were varyingly anxious aboutneeding to protect the people they work with from harm. Disabled people wereconstructed as innocent, vulnerable, and needing protection. In other cases disabledpeople 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 toexplore more in-depth the lived experience of research participants. While the surveyindicated that organizations were providing HIV prevention education, the case studiesrevealed much anxiety about this, and in some cases education was partly avoided. Theresults also suggest that HIV prevention education may be used in a way to control andrestrict disabled people's sexual expression, using a demonizing discourse about sex asdangerous and in some circumstances immoral. This may be done in an absence of adiscourse of pleasure, where disabled people may be empowered to have fulfilling sexuallives. The study also highlights sexual abuse and rape of persons with disabilities as aserious issue. The dissertation ends with recommendations for further research, includingexploring the experience of disabled people themselves, and the need to address thesilence around sexual abuse and rape of persons with disabilities.

[发布机构] Stellenbosch University