HIV/AIDS and disability : an exploration of organizations' responses to HIV/AIDS as it affects people with disabilities
Date
2008-03
Authors
Rohleder, Poul Andrew
Journal Title
Journal ISSN
Volume Title
Publisher
Stellenbosch : Stellenbosch University
Abstract
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.
Description
Thesis (DPhil (Psychology))--Stellenbosch University, 2008.
Keywords
HIV/Aids, Disability, South Africa, Organizations, People with disabilities -- Health aspects, HIV-positive persons -- Employment -- South Africa, AIDS (Disease) -- Patients -- Employment -- South Africa, Dissertations -- Psychology, Theses -- Psychology