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

Reading note 5. Interweaving conceptualizations of gender and disability in the context of vulnerability to HIV/AIDS in KwaZulu-Natal, South Africa.

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Keywords

Education, Emotional and sexual life

Author’s note

In KwaZulu-Natal disability and gender are associated with myths and stereotypes that exacerbate the vulnerability of persons with a disability (PWD) to HIV/AIDS. The present analysis results from a three year qualitative study of 25 persons with disabilities and their caregivers. It outlines the interweaving patterns of stereotyping gender and disability and how this may increase the vulnerability of PWD to HIV/AIDS. The paper emphasizes that access to prevention and treatment is still an unfulfilled goal and that an enormous gap in service delivery persists. Sexual abuse and exploitation have become a major threat to fighting HIV/AIDS within the group of PWD. PWD are particularly vulnerable to HIV/AIDS through the threat of sexual abuse. Potential contributors to this are sexual purification rituals, sexual exploitation and the process of the judicial system. The notion that PWD are asexual, virgins, sexually overactive, cursed, dirty or clean increases their exposure to abuse and subsequently HIV/AIDS. Additionally, misconceptions regarding sexuality, gender and HIV/AIDS have exposed women and girls with disabilities, in particular, to abuse and HIV. Yet, effective responses are still scarce and persons with disabilities are often denied access to sexual education as well as prevention and treatment of HIV/AIDS.

Commentary

In this peer-reviewed article (C4), Hanass-Hancock investigates how harmful cultural stereotypes about disability and gender intersect within the South African province of KwaZulu-Natal. Although the vulnerability of persons with disabilities to HIV is becoming recognised within South Africa, Hanass-Hancock argues that generalised preventative measures will not be successful nationwide. In particular, she highlights that, within the province of KwaZulu-Natal, culture-specific beliefs about disabled sexuality put persons with disabilities, especially women, at risk of sexual abuse and exploitation. In turn, this abuse presents a substantive risk factor for the continued spread of HIV among persons with disabilities. Therefore, to help provide a more effective response to HIV in KwaZulu- Natal, Hanass-Hancock investigates the cultural beliefs held about both gender and disability within the province (C1). In-depth interviews and ranking exercises were conducted with 25 persons with disabilities who were living in KwaZulu- Natal. These aimed to shed light on three areas: a) Cultural interpretations of disability, b) Living conditions and access to healthcare services among persons with disabilities in KwaZulu-Natal, and c) Sexual culture and HIV. This qualitative methodology is relatively inclusive of persons with disabilities, as it allows their voices to be heard to a greater extent than, say, a quantitative methodology (C3). However, greater involvement could have been achieved through the use of a participatory research design (e.g., Chappell, Rule, & Mfana, 2015). Findings identified that disability was associated with sexual myths that increase the vulnerability of persons with disabilities to HIV (e.g., the beliefs that persons with disabilities are virgins and sex with a virgin can cure HIV). They also elucidated the sexual expectations tied to each gender within KwaZulu-Natal, for example that men should be sexually active and women should be submissive to their partner. In the case of persons with disabilities, these gendered expectations interact with disability stereotypes and result in tangible disadvantages, such as lack of acceptance as a partner. Findings also highlighted the problematic ways in which some people respond to the sexual vulnerabilities (i.e. abuse) of persons with disabilities (e.g., denial; trivialisation). Findings highlights the need to address sexual abuse and exploitation among persons with disabilities in South Africa, in particular pointing to the problematic intersection between disability and gender stereotypes as an area of future focus (C3). It is worth noting however, that the generalisability of the study is limited, given the small sample size.

Reading note 6. Investigating educators’ views of sexuality, HIV and AIDS education in working with students with disabilities in South African schools.

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Keywords

Education; Emotional and sexual life

Author’s note

The misconception that persons with disabilities are asexual and sexually inactive often relegates teaching sexuality education in special needs schools to a priority of low importance. The access, or lack thereof, to such information causes students with disabilities to be at an increased risk of HIV infection; therefore, providing them with sexuality education is imperative. The purpose of the present study was to examine the teachers' and childcare providers' views of teaching sexuality, HIV, and AIDS programs in special needs schools. A survey questionnaire was employed to collect the data. The results showed that among the four major study constructs, teaching practices had the highest mean scores (M = 4.2). A correlation matrix among the 10 study variables indicates the strongest positive associations for teaching practices with cure for HIV (r = .37, p <.01) and the seriousness of the AIDS problem (r = .35, p < .05) with programs related to HIV and AIDS. The study confirmed the teachers' high levels of knowledge regarding HIV and AIDS and that they were taking the teaching of sexuality education to students with disabilities seriously. The teachers, however, questioned who should be held responsible for teaching this sexuality education, which may have an impact on their attitudes and beliefs as well as their teaching practices of the topic.

Commentary

In this peer-reviewed article (C4), Louw et al. investigate educators’ attitudes toward teaching sexuality and HIV education to learners with disabilities in South Africa. Misconceptions about sexuality among persons with disabilities mean that they are especially vulnerable to contracting sexually transmitted infections such as HIV. Prior research has noted that teachers have some concerns over delivering sexuality education to learners with disabilities, however there has not been much systematic investigation into teachers’ attitudes toward delivering sexuality and HIV education. Louw et al. help address this gap (C1). The authors recruited teachers (N = 78) from special schools across South Africa which catered for a variety of impairment types (e.g., cerebral palsy, intellectual). These participants filled out a questionnaire which assessed their attitudes toward delivering sexuality and HIV education to learners with disabilities. In light of the rarity of sexuality research with educators of learners with disabilities, this approach represents a valuable collaboration with actors in the field (C2). Findings suggest that educators’ held a high level of knowledge about HIV, viewed HIV as a serious issue, and were comfortable teaching learners with disabilities. Many had received general training in delivering sexuality education to learners with disabilities, but HIV-specific training was lacking. However, educators felt that other staff members, the government, and parents should be responsible for delivering sexuality education as well. The results highlight the need for educators to be better supported when delivering sexuality education to learners with disabilities by having access to training and HIV-specific materials as well as the need for co-ordination between stakeholders (e.g., government) in this area (C3). Louw et al. do highlight some methodological limitations to the study, notably small sample size and low scale reliability (< .60). Therefore, though a valuable small-scale exploration of the area, further research is needed to help generalise the findings and rule out potential confounds.Reading note 7. Disabled people in rural South Africa talk about sexuality.

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Keywords

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

Author’s note

Disability is emerging as a human rights issue of public concern, rather than an individual tragedy requiring medical attention. The issue of sexuality remains relatively neglected in this agenda, particularly as regards the exploration of the complexities of sexuality encountered by disabled people themselves. This paper focuses on the experiences of sexuality of disabled people and parents of children with disabilities in settings of poverty in the Eastern Cape Province of South Africa. Three individual interviews and two focus groups were conducted with disabled adults and parents of children with disabilities. Thematic analysis of the interviews identified three principal themes (1) sexuality development in the family of origin, (2) sexuality in the community and (3) adult sexuality and creating families. Each of these larger themes encompasses various sub-themes that are discussed in the findings. The paper concludes that while sexuality is a very difficult aspect of life for a disabled person due to myths and discrimination against disabled people, it is also an important arena for affirmation and establishing self-worth. It is therefore critical to consider the development of a healthy sexuality amongst disabled people and the promotion of their sexual rights.

Commentary

In this peer-reviewed article (C4), McKenzie explores the sexuality of persons with disabilities and the parents of children with disabilities, with particular focus on sexuality experiences shaped by contexts of poverty. Within the South African context the vulnerability of persons with disabilities to HIV is now widely recognised. McKenzie argues that while this is a useful perspective, ultimately the sexuality of persons with disabilities must be considered as shaped by other contexts as well. Her stated aim is to elucidate factors that may contribute to or detract from healthy sexuality that have been missed by prior research which has adopted this narrow focus (C1). In particular, McKenzie investigates how disabled sexuality in South Africa may be influenced by poverty. To ascertain this, she conducts interviews and focus groups with persons with disabilities and the parents of children with disabilities in an area of South Africa beset by poverty (King Sabato Dalindyebo district within Eastern Cape). Mckenzie’s efforts to reach the indigenous population of this area mean that her study represents a valuable collaboration with those in the field (C2), particularly as poverty is often synonymous with the exclusion of these voices. The author finds that disabled sexuality is shaped by early interactions within the family and community, as well as later experiences during adulthood. Importantly, this suggests that the disadvantage and inequality that persons with disabilities face in terms of their sexuality (and other areas) begins early. For example, within the context of poverty, children with disabilities are not considered a good economic investment by their parents. This leads to them being excluded from important facets of life, like sexuality education. These findings can be used to promote sexual rights for persons with disabilities within the South African context and represent in particular a call for action towards addressing poverty as a barrier to these rights (C3). The paper also usefully attests to the self-efficacy of persons with disabilities as some the participants were now in healthy intimate relationships and had jobs (C3). As is common in this type of qualitative research however, the generalisability of the findings is limited.