The myth of asexuality? Disability stigma as a barrier to sexual relationships in South Africa Literature review

Reading notes

Reading notes were selected with attention to the following Resource Centre criteria:  

• 
  Criteria 1 (C1): Link between the research results and a concrete application of the principles of the UN Convention.  
  
• 
  Criteria 2 (C2): Collaboration researcher / those active in the field.  
  
• 
  Criteria 3 (C3): Research leading to applied or applicable results, for the improvement of quality of life of persons with disabilities.  
  
• 
  Criteria 4 (C4): Research methodology (i.e. peer-reviewed).  
  

For ease of understanding, these criteria are referenced within each reading note, where they are met.
Each reading note contains a link to the relevant research documentary note on the Resource Centre website.

Reading note 1. Secret languages of sex: disabled youth’s experiences of sexual and HIV communication with their parents/caregivers in KwaZulu-Natal, South Africa

Access to the reading note and to complete documents in the documentary database of the Resource Center
Keywords

Child and teenager; Emotional and sexual life; Family: caregiver  

Author’s note

Various health promotion strategies have been implemented in South Africa aiming to encourage young people to talk about issues of sexuality and HIV with their parents/caregivers. Although parent/ caregiver sexual communication may be an effective method of influencing sexual behaviour and curbing the incidence of HIV, very little is known about how young people with disabilities in South Africa communicate about these traditionally difficult subjects with their parents/caregivers. Based on findings from a participatory study conducted amongst 15–20-year-old Zulu-speaking youth with physical and visual disabilities, this paper explores how they perceive youth– parent/caregiver communication about sexuality and HIV. Using Foucauldian discourse analysis, the paper outlines how disabled youth–parent/caregiver sexual communication is governed by cultural customs, sexual secrecy and constructs of innocence. It also argues that the experiences and perceptions of young people with disabilities are critical to the development of future interventions to assist parents/caregivers develop communication strategies that help disabled young people make sense of sexual behaviour.

Commentary

In this peer-reviewed paper (C4), Chappell employs a participatory research design to explore how youth with physical and visual disabilities communicate about their sexuality and HIV with their parents or caregivers. Although communication with parents/caregivers has been identified as pivotal to reducing risky sexual behaviours and HIV infection among South African youth, how disabled youths experience this communication has been thus far neglected. Chappell addresses this gap (C1). Chappell trains 3 youths with disabilities as co-researchers, thus explicitly recognising the sexuality and social agency of persons with disabilities (C2, C1). His approach also confers the practical benefits of allowing access to hard to reach population (i.e. Zulu speaking youth with disabilities) and thus giving them a voice (C2). Chappell’s findings suggest that constructions of youth as “innocent” or “sexually passive” by their parents/caregivers are accentuated for disabled youth. Moreover they suggest (Zulu) youth with disabilities view their parents/caregivers as lacking sexual knowledge due to outdated cultural customs (e.g., ukuhlonipha- respect). Chappell’s analysis further uncovers a hidden discourse that Zulu speaking youth- both disabled and abled-bodied- use to communicate their sexuality with their peers. These findings speak to the need to educate parents/caregivers to communicate effectively about sexual topics with youth who have disabilities (C3). They also identify hidden discourses among Zulu speaking youths as an important area of future research, both as a site of resistance to ableist constructions of sexuality and as a site of vulnerability which may enforce risky sexual behaviours (C3). This paper’s methodology is also particularly valuable to other researchers in demonstrating how persons with disabilities can be given social agency and status as sexual beings during the research process and not just through the research findings (C1, C3). Although Chappell does not explicitly acknowledge it, his findings, derived from Zulu speaking youth with disabilities, are somewhat culture-bound, and as such, may have limited applicability within certain context. Reading note 2. Troubling power dynamics: Youth with disabilities as co- researchers in sexuality research in South Africa.

Access to the reading note and to complete documents in the documentary database of the Resource Center
Keywords

Child and teenager; Emotional and sexual life

Author’s note

Although a proliferation of participatory studies has explored youth sexuality in the African context, very few studies have included youth with disabilities. This is inevitably a result of the misconceptions surrounding disabled sexualities and youth with disabilities’ competence in undertaking research. This article argues against these misconceptions by outlining a participatory sexuality study that worked with youth with disabilities as co-researchers in South Africa. In discussing the experiences of the young disabled co-researchers, the article troubles the constructs of power and empowerment in youth participatory research.

Commentary

This peer-reviewed article (C4) is derived from the same piece of participatory research as Chappell (2015), which was conducted among Zulu speaking youth with disabilities. In this paper, Chappell et al. focus explicitly on the experiences of three young disabled co-researchers and how they challenge notions of power and empowerment during the research process. The methodology that Chappell et al. use recognises the sexuality and social agency of persons with disabilities (C2, C1). Additionally, as this paper focuses specifically on the co- researcher experience, it comprises a particularly useful resource for researchers and co-researchers on future projects utilising a participatory research design (C3). The findings highlight the fluid nature of power and how relationships may change during the research process. They also demonstrate the intrinsic value of “letting go” (p. 394) and allowing the co-researchers to construct and negotiate their own meanings from the research findings. Lastly, the co- researcher process allowed individuals to extend their repertoire of self-positions (e.g., I as co-researcher), allowing for personal development. Although valuable as a guide for those wishing to perform participatory research with persons who have disabilities in South Africa (C1, C3), Chappell et al. hint that there may sometimes be unavoidable obstacles to implementing this approach. In this case, the authors intended to have four co- researchers, but one individual’s parent was not comfortable with letting their child assume this role.