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

Editorial 7

Summary 8

Background 8

Sexuality experiences of persons with physical disabilities 8

Sexuality, disability and marginalised identities 9

Disability, sexuality, and vulnerability to HIV 10

Access to sexuality education 10

Access to sexual and reproductive healthcare 11

Methodology 11

Relationship between the literature and the present project 12

Future research 12

The attitudes of non-disabled South Africans 12

Interventions to improve attitudes and access to sexual healthcare and information 12

Sexuality, disability and other marginalised identities 13

Methodological developments 13

Reading notes 14

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 15

Reading note 3. Protect or enable? Teachers’ beliefs and practices regarding provision of sexuality education to learners with disability in KwaZulu-Natal, South Africa 18

Reading note 4. Challenges in providing HIV and sexuality education to learners with disabilities in South Africa: the voice of educators. 20

Reading note 5. Interweaving conceptualizations of gender and disability in the context of vulnerability to HIV/AIDS in KwaZulu-Natal, South Africa. 22

Reading note 6. Investigating educators’ views of sexuality, HIV and AIDS education in working with students with disabilities in South African schools. 24

Reading note 8. Access to sexual and reproductive health services: Experiences and perspectives of persons with disabilities in Durban, South Africa. 27

Reading note 9. Sexual self-esteem and body image of South African spinal cord injured adolescents 29

Reading note 10. Gender differences in HIV knowledge and unsafe sexual behaviours among disabled people in South Africa. 30

Reading note 11. Experiences and perceptions of sexuality and HIV/AIDS among young people with physical disabilities in a South African township: A case study. 32

Reading note 12. Should issues of sexuality and HIV and AIDS be a rehabilitation concern? The voices of young South Africans with physical disabilities. 33

Bibliography 35

Section A: Societal attitudes 35

i): World 35

ii): South Africa   60

Section B: Access to sexual and reproductive healthcare   62

i): World   63

ii) South Africa   71

Editorial

Sexuality has often been a site of oppression and discrimination for persons with disabilities. This has taken many forms, including the sexual behaviours of some persons with disabilities being seen as problematic, or even pathological, or persons with disabilities being regarded as incapable of procreating. This has been a particular experience for persons with physical disabilities.

One of the most frequent forms of oppression is the exclusion of persons with physical disabilities from being able to lead fully sexual lives, including accessing sexual and reproductive healthcare. Although sexual health has increasingly been seen as a human right (World Health Organisation, 2006), personal accounts and research have indicated that persons with physical disabilities are often excluded. One of the drivers of this exclusion is the prevailing myth that persons with physical disabilities are asexual. This results in society viewing persons with physical disabilities as unsuitable partners, or not in need of sexual health education or care.
There has been an increased international attention given to the sexual health rights of persons with disabilities (e.g. the World report on Disability, WHO, 2011), and there has been a call for increased research in this area. In the southern African context, this has partly been raised in relation to the potential risk for HIV infection. HIV and AIDS are also very much linked to sexual reproductive health rights for women with disabilities in particular.
Few published studies have focused on the sexual and reproductive health concerns of persons with physical disabilities in South Africa. The few studies that are published on persons with disabilities generally suggests that they receive limited education and care on matters of sexual and reproductive health, and may experience sexual violence and rape, partly due to intersecting misconceptions about disability, sexuality and gender.  
There has been no recent review of the prevalence of the myth of asexuality for persons with disabilities since Milligan and Neufeldt (2001) and Di Giulio (2003), and no review specific to South Africa. In order to inform and support a study aiming to challenge these myths a review of the relevant literature about persons with physical disabilities was conducted and is presented here. The review looked at published and grey literature in South Africa specifically as well as the rest of the world, looking at this from the perspective of societal attitudes towards persons with physical disabilities, and access to sexual and reproductive health services. 

Summary

The following summary reviews the knowledge that the extant research projects conducted in South Africa (see Reading Notes) have contributed to the field of disability and sexuality, including the ways in which actors in the field may have benefitted directly from findings. Additionally, attention is given to gaps remaining within in the area and to suggestions for future research. To facilitate these objectives the summary begins with a brief overview of the research background.

Background

Although sexuality was entrenched as a human right under the UN Convention on the Rights of Persons with Disabilities (UN, 2006), the prevailing societal myth of persons with disabilities as asexual and physically incapable of intimate relationships has been slow to dissipate worldwide. Persons with disabilities still face a variety of structural (e.g., inaccessible facilities) and social barriers (e.g., attitudes) which restrict both the expression of their sexuality and their access to sexual and reproductive healthcare. Traditional paradigms used to research this issue have generally adopted a medical perspective, focused predominantly on the needs of healthcare practitioners. However, a gradually emerging body of research has contrasted this by challenging the ways in which society may reproduce myths of asexuality (Anderson & Kitchin, 2000).

While South Africa has become increasingly progressive post-1994 and has certainly taken steps toward emancipating persons with disabilities from sexual exclusion, there remains a paucity of research on disability and sexuality, including with persons who have physical disabilities. Problematically, within South Africa (as well as other contexts), this gap in knowledge is related to broader health concerns, notably in regards to HIV, and vulnerability to infection of persons with disabilities. Therefore, extant applied research in South Africa, as well as the present project, forms part of a corpus of work addressing the urgent need for research on the sexuality of persons with disabilities in South Africa.

Knowledge contributed to the field

The discussion below is divided into the primary areas in which the South African literature has contributed to knowledge to the field on disability and sexuality.

Sexuality experiences of persons with physical disabilities

Research conducted in South Africa that has accessed the sexuality experiences of persons with physical disabilities has challenged some of the traditional notions of disabled sexuality. For instance, Potgeiter and Khan (2006) present discourses which contradict notions of youth with disabilities as asexual beings, instead painting them as sexually expressive individuals who consider themselves to be romantically attractive. Through these discourses, onus is placed on removing disabling social or structural barriers, rather than requiring persons with physical disabilities to make a litany of adjustments (p. 19).

In another example, Chappell’s (2015) research uncovers hidden discourses among Zulu speaking youth, both disabled and able-bodied, that operate as sites of resistance to outdated conceptions of sexuality held by caregivers. For youth with disabilities this hidden language allows them to challenge ablest constructions of sexuality which may be deeply embedded in their parent or caregiver’s cultural view of sexuality.

The way in which culture influences the sexuality experiences of persons with disabilities is also of interest to McKenzie (2013). Her findings suggest that sexuality is shaped by early interactions within the family and community, as well as by later experiences during adulthood. For example, McKenzie finds that women with disabilities were required to navigate the expectation that they were unable to have children from the community growing up. As such, this work is another instance of research which focuses on the ways in which society reproduces common myths of asexuality.

Additionally, some authors, like Wazakili, et al. (2006) are concerned with clarifying how sexuality experiences may impact on youth with physical disabilities accessing HIV services. These enable recommendations to policymakers to made, for the purpose of delivering more comprehensive interventions to improve access to HIV treatment.

Sexuality, disability and marginalised identities

Research conducted in South Africa that has accessed the sexuality experiences of persons with physical disabilities has clarified how sexuality is the product of disability and the intersection of other marginalised identities, like culture or gender. Chappell (2015) finds that (Zulu) youth with disabilities do not discuss sexuality by their caregivers because of outdated cultural customs, in particular the concept of ukuhlonipha (“respect”). Wazakili et al. (2006) present similar results. In that study, both youth with disabilities and their parents recognise that it is taboo to discuss sexuality matters in Xhosa culture. These cultural silences on sexuality perpetuate constructions that youth with physical disabilities are asexual and limit their agency as sexual beings.

The literature also demonstrates how gender may intersect with culture and disability to produce a disadvantaged identity for women with disabilities and a (relatively) advantaged identity for men with disabilities. For example, both men with disabilities and their parents were found reluctant to date females with physical disabilities (e.g., Wazakili et al., 2006). There is also evidence that women with disabilities consider sexual abuse to be the biggest problem they faced, while for men this was reported to be unemployment (Hanass-Hancock, 2009). In this case, cultural myths of disability and sexuality may exacerbate the vulnerability of women with disabilities to sexual abuse. For example, traditional Zulu cosmology adheres to the notion of “virgin cleansing”, i.e. equating an act of intercourse with a virgin as a sexual purification ritual. As women with disabilities are believed to be asexual, this increases their vulnerability to sexual abuse.
Finally, the literature also examines how poverty may shape sexuality experiences. Studies attempt to be as representative as possible by collecting data from different economic environments (e.g., Rohleder et al., 2012) and some explicitly aim to access the sexuality experiences of persons with disabilities in low income areas (e.g., Wazakili et al., 2006). McKenzie (2013) explores this issue in depth. Her findings suggest that situations of poverty may reinforce exclusion (sexual and otherwise) of persons with disabilities from an early age. For instance, as children with disabilities are not considered a good economic investment by their parents, she notes that they are often excluded from sexuality education within the family.

Disability, sexuality, and vulnerability to HIV

The South African literature has contributed knowledge to how disability, sexual experiences and other marginalised identities may impact vulnerability to HIV infection. For instance, given that cultural conceptions of gender, disability and sexuality put women with disabilities at risk of sexual abuse, these cultural views also increase the vulnerability of this population to HIV (Hanass-Hancock, 2009). Unwillingness from parents or caregivers to discuss sexuality or provide sexuality information to persons with disabilities because of these views may perpetuate misunderstandings about HIV, such as that it can only be contracted from a stranger (e.g., Hanass-Hancock, 2009; Wazakili et al., 2006; Wazakili et al., 2009).

The knowledge contributed by the literature on this topic is not solely based on first person experiential data. Rohleder et al. (2012) conduct a descriptive study of HIV knowledge among persons with disabilities across three provinces in South Africa. These results are useful in guiding future targeted interventions on HIV prevention. For example, the findings illustrate some areas of HIV prevention where persons with disabilities lack knowledge (e.g., Having fewer sex partners) and also suggest that, despite recognising the importance of condoms, there exists considerable ambivalence about their use. The study also identifies high levels of unsafe sex behaviours within the sample, the presence of which, while troubling in terms of HIV vulnerability, also challenge the myth that persons with disabilities are asexual.
Other studies (e.g., Chirawu et al. 2014; de Reus et al., 2015; Mavuso & Maharaj, 2015) contribute knowledge to persons with disabilities’ vulnerability to HIV by investigating access to sexuality education and access to sexual and reproductive healthcare. These topics are explored below.

Access to sexuality education

The research conducted in South Africa has also investigated access to sexuality education among persons with disabilities. As illustrated by previous examples, one barrier to access is cultural norms that effectively prohibit sexuality information being distributed to persons with disabilities by families and the community (e.g., Hanass- Hancock, 2009; McKenzie, 2013; Wazakili et al., 2006).

Another aspect that has received considerable attention in the literature is the role that professionals play in delivering sexuality education and information to persons with disabilities. Chirawu, Hanass-Hancock, and colleagues surveyed 99 educators in schools across South Africa to investigate this. It was found that while educators on the whole viewed delivering sexuality education to persons with disabilities positively and felt competent in doing so with “soft” topics (e.g., hygiene), they were less comfortable with others (e.g., masturbation; de Reus et al., 2015). Furthermore, educators felt that they had not received adequate materials with which to deliver sexuality information and that they could be better supported by the parents of children with disabilities (Chirawu et al. 2015). Similar findings were identified by Louw et al. (2014) who also felt that professionals in other roles (e.g., rehabilitation), as well as the government, should be responsible for sexuality education.
A study by Wazakili et al. (2009) complements the above work by exploring the role of rehabilitation professionals in delivering sexuality education from the perspective of youth with disabilities. Participants reported contact with such professionals from an early age, but this did not generally address sexuality issues. Furthermore, participants were unaware of any disability specific education programmes. However, at the same time, they expressed the wish to be involved in mainstream programmes in the future.

Access to sexual and reproductive healthcare

The South African literature has also contributed knowledge to the barriers persons with disabilities face when attempting to access sexual and reproductive healthcare. A particularly illustrative example is a recent piece of research conducted in Durban by Mavuso and Maharaj (2015). Their findings situate sexual and reproductive health services as a large component of the lives of persons with physical disabilities. However, their participants noted several social (e.g., negative attitudes, behavioural discrimination) and structural (e.g., inadequate transportation, inaccessible facilities) barriers when using healthcare services, which contributed to an overall detrimental experience of them.

It is worth noting that the Mavuso and Maharaj (2015) appears to be the only paper whose primary focus is on access to sexual and reproductive healthcare (as defined by this bibliography), though other papers such as Hanass-Hancock and Rohleder et al. also present findings that inform this area.

Methodology

Research conducted in the South African context has utilised a plurality of methodologies to investigate the sexuality of persons with physical disabilities. Both qualitative (e.g., Wazakili et al. 2009) and quantitative (e.g., Rohleder et al. 2012) studies have been conducted and in many cases, the chosen methodological approach has been of benefit to actors within the field, notably the research participants themselves.

For instance, many studies concerned with accessing the sexual experiences and perceptions of persons with physical disabilities have focused on deprived contexts. For example, Wazikili et al. (2006, 2009) recruit participants from Nyanga, a large township suffering from high levels of poverty and violence. McKenzie (2013) adopts a similar recruitment strategy. In addition, her analysis focuses explicitly on how poverty may shape experiences of sexuality. As such, though all experiential studies bring the discourses of persons with physical disabilities to the foreground, these give voice and agency (e.g., as sexual beings) to a particularly vulnerable group of youths with physical disabilities.
Chappell (2015) takes this aim one step further in their study investigating hidden discourses of sexuality among Zulu youths with disabilities. The author utilises a participatory methodology and train three Zulu youths with disabilities to act as co- researchers in the study. As such, this paper’s methodology is 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 outcomes.
In a separate paper, Chappell et al. (2014) investigate the benefits that involvement as co-researchers can have for research participants. Their findings demonstrate the intrinsic value of “letting go” of pre-existing identities, which allows the co-researchers to construct and negotiate their own meanings from the research findings. Additionally, they suggest that the co-researcher process encourages individuals to extend their repertoire of self-positions (e.g., I as co-researcher), allowing for personal development.
Conversely, the rigidity of quantitative studies (Louw et al. 2015) means that they are less able to treat participants as anything more than objects of the research process. However, the results of these studies are more generalizable, and therefore can inform the wider field to some degree.