Abstract
Background: Literature suggests that the comprehensive sexuality education (CSE) of children with disabilities (CwDs) remains located within parental and educators’ ecologies. However, very little focus has been given to the role of hostel carers, especially given that most special schools are mainly residential schools. As such, there is no policy, guidance, or training consideration for support staff such as hostel carers who equally play a care and support role for the CSE needs of CwDs.
Objectives: The aim of this article was to explore how hostel carers in South African residential schools for the blind (SFB) perceived and responded to their role in providing CSE to visually impaired learners.
Methods: Thirty-six hostel carers from three SFB were conveniently sampled and interviewed in separate focus group discussions. Queer theory underpinned this study, while the data generated was analysed thematically.
Results: Given that visually impaired learners spend 9 months of the year in hostels to be given holistic institutional support, hostel carers reported assuming a major role in their CSE. But because they saw themselves as unqualified, outnumbered by learners, and inundated by other responsibilities (e.g. cooking and cleaning), they reported being powerless and incapable to sufficiently cater for the CSE needs of visually impaired learners.
Conclusion: The study suggests that hostel carers have been neglected as care and support agents, despite playing a crucial role in the growing psychosexual needs of visually impaired learners.
Contribution: A holistic approach to providing CSE to visually impaired learners incorporating carers is provided.
Keywords: care and support; comprehensive sexuality education; hostel carers; queer theory; visually impaired children.
Introduction
Carers are strategically placed to offer advice on communication in relations, healthy sexual choices, family planning, while balancing the rights and protection of all parties involved (Ubisi, 2023; Ballan & Freyer, 2017; Stoffers et al., 2023). Learners with visual impairment (LVI), that is those with low to complete vision loss, spend around 9 months of the year within residential hostels to be given adequate academic, social, and subsistence support while situated in the care of the school for the blind (SFB) (Kelly et al., 2002). During this extended stay, carers can form bonds with LVI creating trust, closeness, and feelings of belonging (Kagola & Notshulwana, 2022; Lucas & Fox, 2019; Malgosa et al., 2023). Carers not only take care of their basic needs but also help them adapt as they transcend physical, emotional, social, and sexual maturity which all contribute to optimal health (Ubisi, 2023; Ballan & Freyer, 2017; Stoffers et al., 2023). Even with the myths and misconceptions that children with disabilities (CwDs) are pure, innocent, and will most likely not be interested in sexual activity, carers know the importance of providing human immunodeficiency virus (HIV) and promoting vital sexual health1 through the vehicle of comprehensive sexuality education (CSE2) to improve sexual health of LVI (De Reus et al., 2015; Louw, 2017; Rohleder et al., 2012).
Part of the awareness by carers is that parents of LVI are often not involved in their children’s negotiation of sexual identity and decision-making (Kelly et al., 2002). Conversations around sex debut and sexual practices are often ignored and subdued, making it hard for young visually impaired people to open up about their growing sexual development (Abdul Karimu, 2017). Given the conservative morality around pre-marital sex, who and (with whom) should have sex (Ubisi, 2020), visually impaired youth become scared and ashamed discussing sex and other private matters with their parents (Abdul Karimu, 2017). As evidenced in Abdul Karimu’s recollections, now a visually impaired woman, about receiving sexuality education in SFB (2017):
Similarly, in the School for the Blind that I attended in the 1980s, which enrolled persons with visual impairment from kindergarten through to middle school (equivalent to grades 1–10), and ran a handicraft section for persons older than 18 years, we were not permitted to openly discuss issues around sexuality nor date the opposite sex. (p. 128)
Especially in the African continent where disability and sexuality are hardly discussed simultaneously (Rohleder et al., 2012), visually impaired youth tend to rely on adults in their schooling environment to have open and non-judgemental conversations around sex and their sexual and gender identity (Ubisi, 2021). But this sometimes requires that we queer who is (and what makes) a parent in an environment that is outside the learners’ private household. Queer theory, as a lens which tries to interrogate what is normative practices, will be an invaluable approach to reconsider this parenting role.
Yet, despite carers forming invaluable sources of knowledge regarding the sexual health of LVI as immediate providers (Ballan & Freyer, 2017), their placement within special schools has not been met without its own challenges when it comes to delivering the HIV and CSE curriculum (De Reus et al., 2015; Louw, 2017; Rohleder et al., 2012). Most carers have limited secondary and even lesser tertiary qualifications to care for CwDs. With such poor educational background, especially regarding the sexuality of LVI, can translate to gaps in their own knowledge about CwDs’ sexuality (Louw, 2017). Special needs schools are usually funded by the dwindling budgets of government departments. With such limited fiscal resources, they are often unable to employ the required number of full-time teaching and support staff. Carers occupy multiple roles in the residential premises, including cooking, cleaning, washing, ironing, bathing learners, making up their beds, and supervising supper time in halls of 150+ learners. As learners cannot be monitored minute-to-minute, the caregiver load may not allow for carers to be responsive to all learners’ growing needs, particularly when it comes to extra-curricular activities, which takes place out of their watch. Perhaps it is such roles and responsibilities imposed upon carers to be always with LVI to avoid incidents such as sexual intercourse taking place within the school and hostel residents that carers find it hard to report any misconduct to parents and school managers.
At the same time, teaching sexuality education in special schools is fraught with its own challenges for teaching and support staff. Rohleder et al. (2012), for instance, found that although most teachers and parents saw the need for HIV and CSE, there were various disagreements on which contents (e.g. masturbation) and pedagogies (e.g. use of props) to teach the two subjects. De Reus et al. (2015) maintain parents expected teachers and carers to reinforce conservative sexual norms, which translates to fewer to no teenage pregnancies in schools or else the school becomes blamed for these incidents. However, what parents and school managers may fail to consider is that LVI have basic human rights to move and associate with whomever, particularly as they reach the age of sexual consent (age 16). Louw (2017) found that most special schools in South Africa were expected to run in a vacuum in which parents and other external institutions (e.g. media) were not seen as likely to lend an influence in its learners’ sexual (mis)conduct. Ubisi (2023) found challenges within the delivery of the curriculum itself, suggesting that concepts such as handling disclosure are rarely explicated for carers to apply in everyday scenarios. For this reason, Chappell (2016) advocated for a whole-based curriculum of both teacher, carer, and peer-led activities to bridge gaps in care and support.
Theoretical framework: Queer theory
Queer theory is a critical, discursive praxis of examining truths about society and culture to uncover what has been taken for granted (Kirsch, 2000). Hunt and Holmes (2015, p. 156), for example, use the term ‘queer’ as a verb and a ‘deconstructive practice focused on challenging normative knowledges, identities, behaviors, and spaces thereby unsettling power relations and taken-for-granted assumptions’. Alsop et al. (2002, p. 96) assert that the aim for queer theorists is to revisit hegemonic concepts such as gender and sexuality, and unearth their ‘naturalness and inevitability’, while underscoring the ability to ‘celebrate transgressions from them’. Sexuality education remains a highly controversial, contested, and sometimes silenced issue, particularly among CwDs (De Reus et al., 2015; Louw, 2017; Rohleder et al., 2012). As mentioned above, particularly in the African context where disability and sexuality are almost avoided in family discussions (Chappell, 2016), carers must be brave to confront value-laden discourses to not only validate but also create safer spaces for LVI to broaden their sexual identity. This requires them to become caregivers in loco parentis (in the place of parents). This requires us to queer the term of a parent and what it really takes to be defined as a parent in situations where learners are outside their private households. This queer act of who is and what it takes to become a parent is both a self-sacrificial act and heavy load for carers to partake as they often become blamed for their learners’ behaviour in the school premises (Ubisi, 2023). As the findings will show, carers partake on this decolonial project in this in loco parentis role with even limited knowledge about sexuality or policy guidance. Within this context in mind, I concur with Hunt and Holmes’ (2015, p. 156) recommendation for queer theory when working in liberatory, transformative, and social justice spaces that, ‘Queerness is then less about a way of “being”, and more about “doing”, and offers the potential for radical social critique’.
Research methods and design
Sampling
Thirty-six hostel carers were identified and recruited from three South African SFB across three local provinces (see Table 1 for the participants’ characteristics). The rationale for choosing the specific schools was based on the three biggest provinces in the country with the most available SFB in them. These schools further draw learners from other provinces and therefore consist of a diversity and representativeness of LVI in the country from different backgrounds. These schools further draw carers also from different provinces themselves, bringing a wide sample of carers from different socio-cultural backgrounds. Carers aged from 22 to 47 years old. Carers had 2–14 years of experience in working with CwDs, while their level of education ranged from Grade 7 to Grade 10. None had any post-secondary education or tertiary training in special needs education.
| TABLE 1: Number of hostel carers recruited per school for the blind. |
Data collection methods
The study employed an exploratory, qualitative, multiple case study design for data collection and analysis methods (Creswell & Creswell, 2018). Focus group discussions, with an unstructured interview guide, were used to generate data. The FGDs lasted from 1 h to 2 h with breaks in between. All in all, three FGDs were held in English and other African languages (isiZulu, SeSotho, isiXhosa by the principal investigator fluent in these languages) to avoid language barriers in the data collection process, given South Africa’s diverse linguistic landscape.
Data management and analysis
The recorded audios of the interviews were converted into written transcribed for accuracy (Babbie & Mouton, 2001). Data saturation occurred when no additional data, themes, or coding emerged, and the study demonstrated a robust capacity for replication (Babbie & Mouton, 2001). All data will be stored and destroyed after 3–5 years in a Google Drive file with access only to the principal investigator. Data were thematically analysed using the Braun and Clarke’s (2006) steps of thematic analysis: (1) immerse oneself with the data, (2) identify codes, (3) chart preliminary themes, (4) review themes in relation to the research aim, (5) name themes in consultation with the research aim, and lastly (6) write the report.
Ethical considerations
Ethical clearance to conduct this study was obtained from the University of South Africa, College of Education Ethics Review Committee (No. 2022/04/13/90352025/02/AM), together with its outlined procedures for obtaining informed written consent, voluntary participation with no negative consequences of declining, and confidentiality of participants’ identifying information. No financial remuneration was provided for participating in this study.
Results and discussion
This article presents qualitative findings from 36 hostel carers in 3 SFB generated from 3 FGDs to find out how they perceived and responded to their role in providing CSE to LVI. The findings showed carers remained at the frontline of LVI’s growing psychosexual development. However, the findings also suggested that carers face a myriad of obstacles that complicate their ability to transfer sexuality education within spaces, which constrain to provide informed care and support. Below is a discussion of the two emergent themes, interpretations, and recommendations: (1) carers on the frontline, and (2) challenges of being on the frontline.
Carers on the frontline
Carers reported a host of sexual behaviours by LVI from early childhood when they start sexually stimulating themselves in public places to their teenage years when they engage in risk-taking behaviours to have sex with each other within the residential premises.
Self-stimulation in the classroom
Carers noticed that LVI start exploring their sexuality through touching themselves or each other in class:
‘You will see them touching themselves [down there] … and they also have their own secret places where they can do those things.’ (Carer 1, Female, 32 year old)
Carers showed appropriate responses towards this these displays, acknowledging that LVI, much like their sighted peers, discover sexuality randomly or accidentally such as by touching themselves or others to build their sexual knowledge (Kagola & Notshulwana, 2022; Lucas & Fox, 2019; Malgosa et al., 2023). This finding enables us to queer the existing assumptions about sexuality and disability as it is falsely believed that people with disabilities are disinterested in sex or that all of them are asexual (De Reus et al., 2015; Louw, 2017; Rohleder et al., 2012). As such, this creates a need for more parental, teachers, and hostel carers’ involvement in CwDs’ growing psychosexual development (Chappell, 2016). As Ubisi (2020) advises, parents and other carers need to create secure, respectful, and teaching moments for LVI such as teaching them when and where to engage in self-stimulation.
Engaging in high-risk sexual behaviour
As their sexual curiosity expands during puberty, in accordance with their growing urges, LVI engaged in high-risk sexual behaviours despite their close inspection and monitoring:
‘Because we use to say girls one side, and boys one side and not to be mixed. Even at night, gates are locked, but they have a way of breaking the gates and go to the girls.’ (Carer 2, Female, 37 year old)
This is a significant finding that addresses the sexual agency of visually impaired youth that is often ignored and unaddressed in literature (Ubisi, 2023). That is, LVI also make decisions (whether informed or uninformed) about their growing bodies and sexual desires. These decisions could lead to unwanted or unplanned sexual experienced or debut (Kelly et al., 2002). As available literature corroborates, carers remain cognisant that parents blame them for their children’s early sexual debut (Ubisi, 2023). Yet for carers to be fully held liable in LVI’s sexual debut would mean that they task to always regulate and police their movement and association – a human right’s violation (Constitution of the Republic of South Africa, 1996, Chapter 2, Section 18 and 21). This finding further supports how we need to queer the way the sexuality of visually impaired people continues to be denied, silenced, and problematised by institutional settings. This view may in turn communicate to visually impaired youth that all experiences of sexuality are wrong and to be avoided (Chappell, 2016).
Challenges of being on the frontline
Carers, however, perform a frontline role as sex educators and parents within these spaces amid many constraints in their training, work conditions, and professional limits.
Poor training and limited education
Most carers could not read and write with a highest education level of Grade 8. As previous studies suggest, carers cannot substitute the role of qualified and trained specialists in disability- and child-related sexual health such as social workers (Chappell, 2016; De Reus et al., 2015; Louw, 2017). As one carer noticed: ‘We can talk the whole day when it comes to children. The school really needs a social worker’. However, in this context, carers are forced to take on a parental role of ensuring that LVI have optimal access to proper sexual health. Within this context, professionalism becomes compromised as carers cannot turn a blind eye to the risky sexual behaviours young visually impaired youth engage in within hostels and the rest of the schooling premises. This requires a queering of the traditional role of a professional carer. If carers can be seen as parents with an even greater influence in the lives of LVI, carers can generate more support and recognition for their roles in the lives of LVI. This would require that carers become included in the larger school ecology, which makes decisions and advocacy for the sexual empowerment of LVI. For instance, Louw (2017) suggested that a school-based support team’s responses with intersectoral collaboration of parents, teaching, medical, welfare, and support staff such as carers would exert a greater involvement in the sexuality education programmes of LVI.
Shortage of staff
Carers remain in shortage but carry multiple roles, which are indispensable to the running of the entire school. Yet carers have suggested that having to provide sexuality education amid their day-to-day roles came at other demands namely:
‘… a person who is not on duty will come to you and say while you are dishing up, the children are kissing [outside].’ (Carer 3, Female, 22 year old)
Within such cases, sexuality is left to slip through the cracks, as carers cannot be in two places at once. This finding raises another aspect that should be queered, and that is the self-advocacy role of LVI in their own sexuality education (Ubisi, 2023). According to Chappell (2016), the CSE curriculum was not supposed to be led by teacher and school staff alone. But peer-led sexuality education remains a concerted effort by learners to commit to their own positive sexual choices. As such, carers could be seen as useful agents who could work alongside LVI to support the self- and peer-led CSE groups by LVI (Louw, 2017).
Talking alone is not enough
Carers do not have an equal standing in schools as teachers and school principals. For learners, this makes it easier to rebel against the authority of carers. As such, talking to LVI about delaying sexual debut is sometimes not enough as:
‘…the child will not listen to anything from you. They just go off.’ (Carer 4, Female, 26 year old)
Carers have a choice of techniques to inculcate values, attitudes, and beliefs about healthy sexual choices including role play, drama and theatre, poetry, and the use of object relations (Chappell, 2016; De Reus et al., 2015; Louw, 2017). For instance, Ubisi (2023) has suggested the potential of queering the traditional sexuality education for CwDs by introducing the use of anatomically correct models, which blind learners can feel and touch (e.g. the difference about what is an erect versus a flaccid penis).
Handling secondary disclosure
As sexuality often contains fluid and delicate scenarios, carers must meander through ethical dilemmas such as knowing how to handle disclosures of personal information such as when:
‘You will find that there is a boy and a girl, and the girl will go to the boy knowing her status.’ (Carer 5, Female, 31 year old)
Disclosures for carers are often complicated because they involve information that parents may not want anyone else to find out (e.g. a LVI taking anti-retroviral medication because they were born with HIV). This finding enables us to queer what should be the ethical and professional limits of carers as they are often confronted and privy to very sensitive and private information of their learners. Moreover, the finding also requires us to consider the ethical and legal standards we should have for carers. Scholars such as Ubisi (2023) suggest that disclosure needs to be handled with the school’s residential psychologists, nurses, social workers, or the most available specialist to protect the security of the carer.
Psychological strain
Carers perform roles imbued with emotional labour, with the potential of psychological decline in their ability to coping with demands over time. As for some of the women in their 40s and 50s, carers reflected on their caregiver support efficacy and mental health as:
‘You see here my son, how can you stay with 200 children because even to the only one that you have as your own sometimes makes you feel like you are getting mental illness.’ (Carer 6, Female, 53 year old)
This finding suggests that we queer the double burden of parent and care provider that is often imposed on carers. They have to fulfil these roles without much support from parents and the school governing bodies. Because of the lack of professional training, they are often ignored in self-care and continuous professional training. St Jerry (2021) recommends that carers who find themselves in formal structures such as schools or hostel manage their caregiving load and its impact on their physical, mental, and emotional well-being. St Jerry (2021) suggests carers care for each other through support groups, debriefing with senior colleagues, and relying on holistic self-care practices to prevent work-related burnout.
Conclusion
The aim of this article was to explore how hostel carers in South African residential SFB understood and acted on their role in providing CSE to visually impaired learners. Carers in this study formed frontline agents, taking on various sexual health concerns of LVI from their early childhood to the teenage years. However, carers were often presented with various contextual obstacles such as shortage of staff, a lack of training, and handling disclosures, which compromised their ability to render effective sexuality education. First, to build an integrated, holistic approach for carers providing sexuality education with their limited training and constrained working conditions, carers need to acknowledge the knowledge and resources they have, such as the bonds and personal caregiving experience of raising these learners. Secondly, carers should seek the partnership of teachers, school governing bodies, and governmental departments to capacitate them as they form part of the school’s teaching and learning agents. Thirdly and finally, carers need to also be mindful of their own efforts worth celebrating and maintaining self-care, which will better contribute to their caregiving efficacy. This study is the first study to use queer theory, making its insight drawn a major contribution to the theory. The study has suggested the need for policy, which would promote further upscaling and competencies of carers to be able to provide quality care and support around the sexual health of LVI. Carers were suggested as invaluable role players in school management teams making them a crucial aspect of the school’s community of practice for care and support. Future studies are encouraged to follow carers undergoing formal and informal in-service training within their ability to offer CSE to LVI to improve their caregiving capacity.
Acknowledgements
The author would like to thank Ms Samantha Irish for her professional editorial work that shaped the final outlook of this article.
Competing interests
The author declares that they have no financial or personal relationship(s) that may have inappropriately influenced them in writing this article.
Author’s contributions
L.M.U. is the sole author of this article.
Funding information
This work is based on the research supported wholly by the National Research Foundation of South Africa (Grant Number: 129858).
Data availability
The data that support the findings of this study are available on request from the corresponding author, L.M.U.
Disclaimer
The views and opinions expressed in this article are those of the author and are the product of professional research. It does not necessarily reflect the official policy or position of any affiliated institution, funder, agency, or that of the publisher. The author is responsible for this article’s results, findings, and content.
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Footnotes
1. The World Health Organization (WHO) (2002) defines sexual health as: ‘… a state of physical, emotional, mental and social well-being related to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled’.
2. Comprehensive sexuality education is a holistic, attitude- and value-driven, lifelong approach at children and adults, among others’, safe and informed sexual decision-making, communication in relationships, agency, consent, contraception, and diverse gender and sexuality identities (UNESCO 2018).
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