(Re)thinking sexual access for adolescents with disabilities in South Africa: Balancing rights and protection

1.1 Defining disability, sexuality and sexual access

The construct of disability in South Africa has been the subject of much historical debate, ranging from a biomedical discourse to that of a social and human rights perspective.15 For purposes of the article, disability is situated as a social construct and draws upon the CRPD, which defines disability as

an evolving concept that results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full participation in society on an equal basis with others.16

For purposes of the article, the focus will be on adolescents with sensory, physical, communication, and mild to moderate intellectual or psycho-social disabilities.17

In terms of sexuality, it is also recognised as being more than just a biological or psychological construct, and includes other significant factors such as gender, identity, desirability, love and forming meaningful relationships. In view of this, the article adopts the World Health Organisation (WHO) definition, which describes sexuality as

a central aspect of human life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, ethical, legal, historical, religious and spiritual factors.18

In acknowledgment of the WHO definition of sexuality, it is clear that when defining sexual access, it goes beyond merely sexual intercourse, and includes ‘access to the psychological, social and cultural contexts and

supports that acknowledge, nurture and promote sexuality in general’.19 Therefore, the article draws upon the work of Kangaude, who categorises sexual access within two principle domains. According to Kangaude,20 the first domain of sexual access acknowledges the importance of supporting and nurturing sexual expression, and covers issues such as comprehensive sexuality education and sexual autonomy. The second domain focuses upon opportunities for sexual encounters. In relation to disability, opportunities for sexual encounters stir up controversies and emotive discussions around such issues as facilitated sex, sexual surrogacy, and the use of sex workers.21 Although discussions surrounding access to sexual surrogates and sex workers are an important issue, they go beyond the scope of this article. Likewise, in discussing sexual encounters, the article does not promote sexual activity amongst adolescents with disabilities who lack sexual maturity.

2.1 South African disability rights movement and sexuality

The medicalised and apolitical focus on disabled sexuality has drawn attention away from the rights of sexual access of people with disabilities, and fails to recognise the experiences of multiple barriers to sexual expression and relationships.32 What is more, this apolitical approach to sexuality has been inadvertently reinforced by the disability rights movement, both in South Africa and globally. For instance, although the disability rights movement in South Africa has played an influential role in terms of addressing the exclusion of people with disabilities from public issues, such as education, employment and poverty reduction strategies, the private lives of people with disabilities, that is, sexuality and identity, are not seen as equally worthy of concern.33 This is evident in the South African country progress report to the UN General Assembly on the implementation of the CRPD.34 For instance, the report highlights varying changes in terms of physical and social disability indicators, but does not include anything about sexual access. By failing to engage with sexual access as a rights-based issue, the disability rights movement in South Africa perpetuates the marginalisation of disabled sexualities. Finger, a disabled feminist activist, poignantly sums this up by suggesting:

The disability rights movement has certainly not put sexual rights at the forefront of its agenda. Sexuality is often the source of our deepest oppression; it is also often the source of our deepest pain. It’s easier for us to talk about -and formulate strategies for changing - discrimination in employment, education, and housing than to talk about our exclusion from sexuality and reproduction.35

The continual absence of sexuality on the disability rights agenda impelled disabled feminists and disability scholars to call for the politicisation of sexuality within the disability rights movement, particularly in the Western world.36 In so doing, they aimed to draw attention to the notion that the sexual socialisation of people with disabilities did not exclusively revolve around pathologised bodies, but also the structures within social communities. As portrayed by Shakespeare:

The solution is not more prosthetics, or more Viagra, or any other physical or clinical intervention ... The barriers to the sexual expression of disabled people are primarily to do with the society in which we live, not the bodies with which we are endowed with.37

The politicisation of disabled sexualities as a rights-based issue is still in its infancy in the context of Africa and the global south. Moreover, much of African disability scholarship on sexuality is primarily focused upon the rights to protection from sexual exploitation and abuse. This protection discourse may be largely influenced by the reported high incidence of sexual abuse among people with disabilities,38 but also international rights treaties.

3.1 Sexuality and disability in the Convention on the Rights of Persons with Disabilities

In terms of disability, the CRPD clearly recognises the full and equal participation of all people with disabilities in all aspects of life. Included in this are several rights pertaining to sexuality. These include the rights to freedom from exploitation, violence and abuse;44 respect for the home and family;45 and the right to health.46 Besides protection from abuse and sexual violence, these specific articles highlight the right to reproductive health information and the right to marry and have children. Reflecting critically on these sexuality-related rights, although they do acknowledge people with disabilities as sexual agents, and also issues of gender, reproduction, and protection from abuse, the CRPD, like other UN conventions and treaties, fails to explicitly mention sexual access, and ultimately continues to promote a heteronormative gaze. As a result, issues surrounding sexual diversity, promoting positive sexual identity development, sexual expression, and sexuality education remain invisible within the international disability rights discourse.47

However, this has not always been the case. For instance, the United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities, which informed the backdrop of the CRPD and national disability legislation, clearly call for the politicisation of disabled sexualities in Rule 9(2), which unequivocally states:

Persons with disabilities must not be denied the opportunity to experience their sexuality, have sexual relationships and experience parenthood. Persons with disabilities must also have the same access as others to family planning methods, as well as to information in accessible form on the sexual functioning of their bodies.48

In addition to this, Rule 9(3) states:

States should promote measures to change negative attitudes towards marriage, sexuality and parenthood of persons with disabilities, especially of girls and women with disabilities, which still prevail in society.49

According to Schaaf, the failure to explicitly include sexual access in the CRPD was not only due to pressure from the Vatican and other religious states to limit sexual rights, but also because of widespread concerns about eugenic practices and the ‘centrality of the body in conceptions of disability’.50 Moreover, reflecting on both the CRPD and Standard Rules, both fail to address the needs of adolescents with disabilities. Given the invisibility of sexual access and disabled adolescents in the CRPD and other UN conventions and treaties, it may provide a reason as to why national states and the disability rights movement in South Africa have not readily politicised the issue of disabled sexualities within their own legislation. In this regard, concepts of disabled sexual rights remain inadequate, with what Miller describes as ‘troublesome but predictable disjunctures [that] constrain the evolution of coherent and progressive policy positions in this area [of disabled sexual rights].51

3.2 Sexuality and disability in national legislation

As outlined earlier in this article, South Africa is recognised for its comprehensive legislation and policy development in relation to disability rights. However, similar to the CRPD and other UN conventions, rights in relation to sexual access and disability are minimal; however, rights in terms of protection from abuse appear strongly in national sexuality-related legislation. An example is the Criminal Law (Sexual Offences and Related Matters) Amendment Act 5 of 2015, which includes two parts related to ‘sexual offences against children, and persons who are mentally disabled’.52 In summary, the Act states that youths and adults who are ‘mentally disabled’ (either intellectually or psycho-socially) are unable to consent to sex and, therefore, any attempt at a sexual act is deemed an offence.

In a first reading of the Act, it is often misunderstood that the Act is applicable to everyone with an intellectual or psychosocial disability, and is often used as a means of preventing sexual encounters amongst adolescents with varying intellectual disabilities. However, on closer reflection, in particular the definitions in Chapter 1, the Act defines ‘persons who are mentally disabled’ as any person who, as a result of a disorder or disability of the mind, is:

(a) not able to understand the nature and outcomes of the sexual act;

(b) able to understand the sexual act but unable to make a proper decision based on this understanding;

(c) unable to resist the sexual act; or

(d) unable to show that she does not want to take part in the sexual act.53

Given this context, it is evident that the Act does not prevent sexual encounters amongst adolescents with disabilities (including those with intellectual or psycho-social impairments) who can understand the nature and outcome of a sexual act, and who are able to consent to sexual acts.

4.1 Sexuality education in schools

With the reported inability of parents and caregivers to discuss sexuality, and their apparent lack of awareness surrounding sexuality rights, more emphasis has been placed on educators to provide moral (sexual) guidance. However, given the fact that nearly half a million children and adolescents with disabilities in South Africa do not attend school,58 it is clear that they are exempt from these efforts to provide sexuality education. Nevertheless, those adolescents with disabilities who do attend school are often exempt from efforts at sexuality education.59 It is reported that some educators in South Africa believe that discussing sexuality would only encourage adolescents with disabilities to go ahead and practise sexual activities.60 Contrary to this, however, some educators working in special education did recognise the importance of providing sexuality education to learners with disabilities, but the way in which it was delivered differed between schools and educators.61 Furthermore, as indicated by De Reus, educators of learners with intellectual disabilities were less inclined to discuss sexuality in detail, as they assumed that the learners would not understand.62

These differences in terms of the provision of sexuality education are exacerbated by a reported lack of skills and resources on the part of educators in terms of conveying sexuality messages in accessible and understandable format to learners with disabilities.63 Moreover, with the invisibility of disabled sexuality in initial teacher education and national guidelines in teaching sexuality education, educators also reported tensions between the discourses on human rights and the restriction of sexual behaviour of adolescents with disabilities.64 This conflict between rights and sexual access will be discussed below.

Apart from a reluctance on the part of adults to discuss sexuality issues, attempts at sexual expression or sexual encounters are often also chastised or prevented. This is particularly evident amongst adolescents with intellectual disabilities living in institutional care or educational settings. For example, studies in New Zealand65 and Canada66 demonstrate how a lack of privacy, combined with negative attitudes of caregivers and support staff, reduced opportunities for the development of intimate relationships in institutional care settings. Moreover, attempts at sexual acts by young residents with intellectual disabilities were generally classified as problematic behaviour rather than as expressions of love and intimacy.67 In addition to attitudes towards sexuality and disability, issues of morality and religion also play an integral role in preventing sexual encounters. This was revealed in a study conducted amongst educators and support staff in a Christian residential organisation for adolescents and young adults with intellectual disabilities in the Western Cape. Some educators identified a conflict between their Christian beliefs and the promotion of sexual rights, as identified in the following extract:

If an organisation were to recognise the sexual rights of persons with learning disabilities, and provide condoms to residents, there will be a perceived condoning of sexual relationships occurring outside of marriage.68

To overcome this moral dilemma and to manage sexual behaviour, educators would make it difficult for the residences to access condoms, and did not provide private spaces in which couples could meet.69 Critically analysing this situation, the lack of privacy and access to condoms not only goes against the Children’s Act, but would undoubtedly not deter curious adolescents with disabilities from having sexual encounters. If anything, this situation may perpetuate risky sexual behaviour and heighten risks of unplanned pregnancies, rape and HIV infection.

Separate from the doubts concerning the sexual capacities of adolescents with disabilities, Milligan and Neufeldt70 contend that the reluctance of both parents, caregivers and educators to engage with the discourse of sexual access may be further attributed to their efforts to protect adolescents with disabilities from future rejection and vulnerability to sexual abuse. These concerns about abuse also intersect in the control of reproduction and use of forced or coerced sterilisation to protect young disabled women from pregnancy following sexual abuse.71 This is of particular relevance in the South African context, where sexual and gender-based violence is rife and where children and youths with disabilities are two to five times more likely to experience sexual abuse than their non-disabled peers.72

A closer reflection on the various attitudes of parents/caregivers and educators towards the sexuality of adolescents with disabilities clearly reveals that sexuality is presented as a dangerous and risky discourse. These notions of sexuality as ‘dangerous’ or ‘risky’ are not unique to the disability discourse, but also feature prominently in South African sexuality discourse and national legislation.73 Given this perspective, instead of recognising the sexual agency of adolescents with disabilities, parents/caregivers and educators have tended to focus on the construct of adolescents with disabilities as innocent and, therefore, in need of protection. Although not denying the importance of protection from harm, it is argued that the discourse of innocence ‘constructs young [disabled] people as un-knowledgeable about sexuality, sexual practice and their own bodies, and inherently creates young [disabled] people as pure’.74

Although the discourses of innocence and purity are also related to non-disabled adolescents,75 it is more pronounced amongst adolescents with disabilities as it is believed that sex will never form a part of their lives. This continual silence surrounding sexuality and adolescents with disabilities demonstrates not only adultist constructs of adolescence, but ableist constructs of disabled sexuality. Quintessentially, it also demonstrates a general disregard for recognising the sexual agency and rights of adolescents with disabilities. As argued by Coppock, the discourses of silence and protectionism does nothing more than ‘skilfully disguise a fundamental distrust in young [disabled] peoples’ competence’.76 Moreover, the silence surrounding sexual access and adolescents with disabilities reflects a powerful discourse that ultimately culminates in the regulation of young disabled sexual identities.

4.2 Sexual self-esteem and adolescents with disabilities

As a result of the silence and invisibility of adolescents with disabilities in terms of sexual access, many disabled adolescents may lack the confidence to find out how to discuss matters of sex, love and relationships.77 This, for example, was identified in a qualitative study in the United Kingdom, which sought to understand disabled sexuality amongst 44 disabled persons in the UK.78 The study found that, although respondents were able to talk in general about their lives and issues of identity and barriers, they had difficulty talking about relationships and sexuality. As a consequence of not being able to speak openly about sexuality, it could in turn increase the vulnerability of adolescents with disabilities to abusive relationships and continue to privilege hegemonic notions of non-sexuality.

Similarly, in the South African context, as children and youths with disabilities are often ‘hidden’ away, either in their own homes or distant schools or institutions, it is argued that adolescents with disabilities may experience a different sexual identity development process than their non-disabled peers, as the knowledge that they are ‘different’ is always present.79 Consequently, in the absence of positive role models and because of their need to ‘fit in’ with their peers, some adolescents with disabilities may try to overcompensate for their physical and psycho-social differences.80 This became evident in a study amongst Zulu-speaking older adolescents with visual and physical disabilities in KwaZulu-Natal, where it was reported that, in an effort to overcompensate for their differences and fit in with their non-disabled peers, some disabled adolescents displayed behaviour that put them at high risk of sexual exploitation, abuse and HIV infection, all in an attempt to prove their self-worth.81