Paradox of risk: sexuality and HIV/AIDS among young people with physical disabilities in Nyanga, South Africa
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The current study aimed to describe the paradox of risk through an exploration of the experiences and perceptions of sexuality and HIV/AIDS among physically disabled young people in Nyanga, South Africa. This is against the background that AIDS has become a national and global crisis, which requires all people to participate in efforts to contain the pandemic. Yet literature indicates that young people with disabilities are not participating in such efforts. There is also an assumption, that physically disabled young people do not experience challenges in expressing their sexuality and accessing HIV/AIDS prevention services, to the same extent as other disability groups such as the blind and those with intellectual disabilities. Hence there was a need to explore disabled young people’s own understanding of risk and the factors that hinder or support their participation in existing sexuality education and HIV/AIDS prevention programmes. It was also important for this group to suggest ways in which they may participate in such programmes. A qualitative case study design was chosen as the appropriate means for achieving the aim of the current study. This design allowed me to study disabled young people without separating them from their context. In this way, a comprehensive understanding of this group was realised. Multiple methods of data collection from multiple data sources were employed, a feature that helped to discuss the ‘case of disabled young people’ in-depth and breadth. Policy and programme documents and relevant literature were reviewed for relevant information on sexuality education and HIV/AIDS prevention services for disabled young people. Fifteen disabled young people between the ages of 15 and 24 participated in individual in-depth interviews and in focus group discussions. Pertinent issues that arose from individual interviews were discussed with 15 parents, 15 senior citizens, five sangomas and five counsellors in focus group discussions of 4-10 members each. Similar issues from focus group discussions were taken up with eight key informants in more individual in-depth interviews for confirmation and clarity. Textual and contextual features of the Atlas.ti computer programme for analysing qualitative data were used to organize and analyse data. The textual features were used to code data and write memos, while the contextual features were used to link the codes and to form networks from which categories and themes were generated. Themes and sub themes were used to answer the research questions and meet the objectives of the study. The study has revealed a complex interplay of contextual and individual factors that combine to create situations of risk for disabled young people. These factors affect disabled young people’s experiences of growing up and participation in existing sexuality education and HIV/AIDS prevention programmes. Contextual factors include cultural beliefs and poverty, while individual factors include sexual behaviour and attitude towards HIV risk. I found that disabled young people have limited access to education and other social amenities, which in turn affect their experiences of life in general and sexuality and HIV/AIDS. The study has revealed that the paradox of risk lies in the contradictory scripts and attitude towards the pandemic at contextual and individual levels. The belief that disabled young people are asexual is common in Nyanga, yet society targets this group for sexual exploitation and rape. In the face of an epidemic that has crippled the fabric of society, and in spite of the widespread availability of HIV/AIDS awareness programmes, most disabled young people still do not have accurate factual knowledge about HIV/AIDS. Yet accurate information is one of the prerequisites for making informed decisions about HIV/AIDS prevention. Furthermore, gender differences make the experiences described above more serious for disabled young women who suffer discrimination and sexual abuse even from fellow disabled young men. Although most disabled young people indicated that they are aware of the gravity of the pandemic and that they personally feel threatened, they are not taking preventive measures against contracting the infection; they have adopted a fatalistic response to risk. Participants argue that in the same way they are not able to protect themselves from going hungry, or living in shacks, they also cannot prevent getting infected with HIV, which they equate to any accident over which they have no control. Disabled young people expressed the need to participate in mainstream education systems, sexuality education and HIV/AIDS prevention programmes. They also pointed out that there will always be disabled young people who require separate programmes because of special disability circumstances such as inability to travel to clinics/centres. In order to meet disabled young people’s expressed wishes, I have recommended in this thesis, a community-based sexuality education and HIV/AIDS prevention programme that focuses on the whole community instead of individuals only so as to deal with contextual and individual factors of risk. Such a programme encourages dialogue and participation as opposed to the information giving approaches from experts. A guideline that existing HIV/AIDS intervention programmes can use to include disabled young people’s special circumstances, has been presented.