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


Reading note 12. Should issues of sexuality and HIV and AIDS be a rehabilitation concern? The voices of young South Africans with physical disabilities



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Reading note 12. Should issues of sexuality and HIV and AIDS be a rehabilitation concern? The voices of young South Africans with physical disabilities.



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Keywords

Child and teenager; Emotional and sexual life


Author’s note

Purpose. Although rehabilitation is an integral part of the lives of many young people with physical disabilities, sexuality education and HIV and AIDS prevention services are not. The purpose of this study was to record the voices of disabled young people regarding their experiences of sexuality and HIV and AIDS and to determine the role of rehabilitation professionals in this regard.
Methods. Sixteen young people with physical disabilities, aged 15–24 years participated in the study. Individual in-depth interviews were conducted with each participant, followed by focus group discussions comprising four to six participants. Responses were audiotaped and transcribed verbatim. Textual and contextual features of the Atlas.ti computer programme were used to support the thematic analysis of the data.
Results. The results indicated that most participants had received some form of rehabilitation for their physical impairment, yet sexuality and HIV and AIDS matters were not part of the rehabilitation process. Although the majority were aware of sexuality and HIV and AIDS issues, their limited factual knowledge did not persuade them to change their sexual behaviour or take preventive measures against contracting HIV infection.
Conclusion. Rehabilitation professionals need to widen their scope of practice to include the promotion of good sexual and reproductive health for disabled young people.
Commentary

In this peer-reviewed article (C4), Wazakili et al. examine the experiences that South African youth with disabilities have of sexuality and HIV, with specific reference to the role that rehabilitation professionals play in this respect.The authors note that persons with disabilities are often overlooked when it comes to the provision of sexuality education. Similarly, there is concern that rehabilitation professionals are neglectful when providing this information (e.g., due to lack of experience), contributing to this populations’ vulnerability to HIV. In light of the need to better involve rehabilitation professionals in targeted interventions with this population, Wazakili et al. attempt to record the voices of South African disabled youth to ascertain what role these professionals should play (C1). As these voices are rarely heard in response to sexuality and HIV issues, the study represents a valuable collaboration with actors in the field (C2). Moreover, the authors conduct in-depth interviews and focus groups with individuals residing in Nyanga, a large township characterised by poverty and makeshift housing, meaning that agency is given to a particularly vulnerable group of persons with disabilities (C2; see also Wazikili et al., 2006). Their findings indicate that youth with disabilities experience several gaps in their sexuality education. They have limited knowledge of their sexual rights and also limited factual knowledge about HIV and the risks of contracting it. They further indicated no awareness of disability specific intervention programmes to address this and expressed the wish to be involved in mainstream programmes instead, despite the fact this was uncommon at present. Importantly, participants reported contact with rehabilitation professionals from an early age, though this was limited in some more rural settings and did not generally address sexuality issues. The work conducted by Wazikili et al. allows the voices of South African disabled youth to be heard. Based on these voices, the authors make a number of recommendations to improve the provision of sexuality and HIV education to this group (C3). These include advising that rehabilitation professionals work closely with the parents of children with disabilities in order to deliver effective education. They also highlight the need for inclusive HIV educational programmes and challenge rehabilitation professionals to take the lead in their design and implementation. The authors comment on some of the limitations of the study, notably the inability to access participants that lived in particularly dangerous areas of the township and initial difficulties in establishing rapport and interview depth due to language barriers. Therefore, although the paper records the voices of South African youth with disabilities, we must be aware that there are still some that need to be heard more clearly.



Bibliography

The following bibliography of applied research pertinent to the project is divided into two sections, based on thematic content of each source: (A) attitudes toward the sexuality of persons with physical disabilities or (B) persons with physical disabilities’ access to sexual and reproductive healthcare. In sources where both themes appear, classification has been made according to the dominant theme present (identified through close inspection of the abstract, keywords and/or main body of source).


Additionally, each section comprises two subsections, based on geographical region: (i) World and (ii) South Africa. These have been classified based on the country or region where the research has been conducted.

Prior to presenting the main bibliography, it is of interest to note that there are two review papers of the area:



  • Di Giulio, Gina. "Sexuality and people living with physical or developmental disabilities: a review of key issues." The Canadian Journal of Human Sexuality 12, no. 1 (2003): 53-68.

  • Milligan, Maureen S., and Neufeldt, Aldred H. "The myth of asexuality: A survey of social and empirical evidence." Sexuality and Disability 19, no. 2 (2001): 91-109.



Section A: Societal attitudes

Section A lists applied research which primarily investigates attitudes toward disabled sexuality. This includes empirical data on people’s beliefs, emotions and experiences of the sexuality of persons with physical disabilities. The majority of studies investigate the attitudes of persons with physical disabilities themselves, often through qualitative methods design to elucidate the lived experiences of these individuals. Studies that gather data from non-disabled participants generally do so for the purposes of including a comparative/baseline sample; few expressly investigate non-disabled attitudes toward disabled sexuality. Research has also paid some attention to professional, and less commonly, parental attitudes toward disabled sexuality.




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