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CHAPTER 2; Literature Review
INTRODUCTION
In Chapter 2, the social systems theory of sexuality of sexuality is proposed. This chapter starts by acknowledging the sexuality and sexual identity of women with intellectual disability. Thereafter, their sexuality needs and various misconceptions and myths are addressed. This is followed by a brief discussion of three disability models, namely the psychological model, the medical model and the social model. The chapter concludes by describing the various components of the proposed social systems theory, namely the primary stakeholders (women with intellectual disabilities and their right to sexuality education and sexual identity), the policy system, the secondary stakeholder group (the caregivers at the residential care facilities), the pedagogical system, and finally, the development of the sexuality training programme. The essence of this literature survey is presented in Figure 2.1.
SEXUALITY OF WOMEN WITH INTELLECTUAL DISABILITIES
Sexuality is a multi-faceted construct (Cuskelly & Gilmore, 2007). Sexuality knowledge is more than just the sum of facts about body parts and sexual behaviour (Forchuk, Martin & Griffiths, 1995; Medlar, 1998; Sweeney, 2007). For women, sexuality embraces the life experiences of touch, affection, intimacy, self- worth, dignity and competence in regard to their interpersonal relationships (Medlar, 1998). Therefore, sexuality is the one way in which women define themselves as it is an extension of our self-esteem and can influence our interaction with others. The quality of and competence within interpersonal relationships are determined by how good women feel about themselves: being worthy of receiving and the capability of embracing life experiences (Matich-Maroney, Boyle, & Crocker, 2003; Medlar 1998).
Sexuality is one of the important elements that form women with intellectual disabilities’ identity. Sexuality is expressed by a woman in many ways: the way she dresses, if she wears make-up, if she flirts with someone, how confident she is in life and the relationships she forms. Being able to express one’s sexuality is just one part of the overall communication of the self – albeit an important part of life and how one’s identity is expressed. For women with intellectual disability the constant denial of the expression of sexuality has a detrimental effect on their confidence and self-worth (Bonnie, 2004). There exists a dearth of literature on how women with intellectual disabilities develop their sexual identity or conceptualise their own identity (Fitzgerald & Withers, 2011). In some cultures, it is as if women with intellectual disabilities are viewed without gender and sexuality, with their only needs and desires in relation to their intellectual disability. However, there is coherent literature around how individuals who do not have an intellectual disability develop a sexual identity. Recent bio-psycho social models incorporated the influence of factors of the individual’s micro-social context, culture and religious influences into the development of sexuality (Fitzgerald & Withers, 2011). When applying these models to the sexual identity development of women with intellectual disabilities they would predict negative sexual identities if taking into account negative attitudes that exist towards the sexuality of women with intellectual disabilities both in the micro-social contexts and in the wider culture (Fitzgerald & Withers, 2011).
Milligan and Nuefeldt (2001) notes that individuals with intellectual disabilities are often viewed as lacking the capacity to appropriately express their sexuality needs. Women with intellectual disabilities’ lack of sexuality knowledge limits their ability to recognise potential sexual abuse and exploitation (Forchuk, et al.,1995). In addition, their social incompetence prevents them from being involved in positive intimate relationships (Forchuk et al., 1995). Wilkerson (2002) highlights the fact that women with intellectual disabilities have to contend with social and cultural denial of their sexuality to illustrate the challenges surrounding them. Furthermore, women with intellectual disabilities are seldom portrayed in a positive light in the media, movies or television and advertising industries, but rather as the recipients of charity, evil characters in movies or the tragic victims of illness or accidents (Bonnie, 2004). They are also rarely portrayed as being involved in relationships but rather perceived as an unspoken taboo excluded from any discussion or representation by society, which reinforces the notion of the asexuality of women with intellectual disability (Bonnie, 2004).
In order to address the unspoken taboos and myths around sexuality two simultaneous activities are required: addressing the need specifically and addressing misconceptions to illustrate the challenges surrounding sexuality in women with intellectual disability. One of the reasons why women with intellectual disabilities find it difficult to learn about their own sexuality is because the training methods which are used to address the complex and emotionally laden construct of their own sexuality knowledge are ineffective. Research indicates that within the disability field, women with intellectual disabilities are the silent voices in the knowledge of their sexuality (Grieveo, McLaren, Lindsay & Culling, 2008; Hanna & Rogovsky, 1991; Talbot & Langdon, 2006).
ADDRESSING SEXUALITY NEEDS
According to Fitzgerald and Withers (2011), there is a need to focus on the sexuality of women with intellectual disability from a sexual abuse perspective. Current research needs to focus on sexuality education, the thoughts and feelings of women with intellectual disabilities related to their sexuality and sexual identity. These women struggle to develop positive sexual identities. Reason being the cumulative effects of negative social attitudes to the sexuality of women with intellectual disabilities as well as restrictive social perspectives on the sexuality of women in general (Fitzgerald & Withers, 2011). Negative attitudes to the sexuality of women with intellectual disabilities result in the sexual needs of these women frequently being ignored, curtailed or actively being denied by professionals as well as the general community (Morales, Lopez & Mullet, 2011; Szollos & McCabe, 1998). Protective attitudes toward women with intellectual disabilities are generally motivated by the desire to protect them from unpleasant experiences, although it is these very experiences which help them grow (Deeley, 2002). Attention needs to be paid to what women with intellectual disabilities want in terms of support on sexuality education, asking caregivers for their perspectives on what they think would give a clear indication of what sexuality and relationship training education programme should address. Therefore, for example, when asking 21 young women with intellectual disabilities about sexuality they stated that their main interests were related to friendship and dating (Bleazard, 2010). Finding the means to empower women with intellectual disabilities to acknowledge, welcome and take control of their own sexuality should be seen as a high priority within an established continuous sexuality and relationship training education programme with a residential care facility.
ADDRESSING MISCONCEPTIONS
While the needs of women with intellectual disabilities should be addressed, misconceptions should simultaneously be addressed, as these aspects are two sides of the same coin.
Myth one is the belief that the biological defects that exists in women with intellectual disabilities render them unable to have feelings of a sexual nature. The second myth is that if sexual functioning is possible, women with intellectual disabilities have limited social judgment, lacking the capacity to engage in responsible intimate relationships. In addition, women with intellectual disabilities are viewed as not having the cognitive skills to think abstractly as would typically developing adults, questioning whether they will be able to follow social norms and societal expectations surrounding socially appropriate behaviour (De Loach, 1994). In their study on attitudes and perceptions towards disability, Esmail, Darry, Walter and Knupp, (2010, p 1151) found that some individuals with disability were taught that sexuality was not equivalent to their typical peers and that they should only “be with other people with disability”. Aunos and Feldman (2002, p 287) also reported that ten out of 13 persons with disability stated that sexuality was a “dirty and nasty business” and apart from that, they were generally not knowledgeable concerning sexuality topics. Moving from large institutional settings into residential care facilities, the community attempted to lessen the perceived risk of sexually deviant behaviour by attempting to eradicate sex drives through medication (Bernstein, 1985).
The Western Cape Forum for Intellectual Disability (WCFID) in South Africa reported a range of different perceptions regarding sexuality of people with disability, which reflect these misconceptions (Johns, 2005). Firstly, society often refuses to accept the sexuality of women with intellectual disabilities (Johns, 2005). Secondly, the literature portrays women with intellectual disabilities in a negative position related to their own sexuality by labelling them as vulnerable, a high-risk population and perpetual children (Swango- Wilson, 2008). Thirdly, society perceives women with intellectual disabilities as being « sexually innocent », still needing protection from sexual experiences (Bryen, 2014; Johns, 2005). Fourthly, women with intellectual disabilities are also viewed as « promiscuous » and incapable of dealing with sex responsibly (Christian, Stinson & Dotson, 2001; Cuskelly & Bryde, 2007; Karellou, 2003; Szollos & McCabe, 1995).
All of these misconceptions contribute to the fact that out-of-school females are the most vulnerable group at risk of sexual abuse (Christian et al., 2001; Cuskelly & Bryde, 2007; Karellou, 2003; Szollos & McCabe, 1995). With limited educational opportunities to learn about their own sexuality, women with intellectual disabilities are often denied the right to make choices to engage in appropriate intimate relationships (McCabe, 1999; Phasha, 2009; Swango-Wilson, 2009). This could predispose them to sexual abuse (Bryen, 2014). Adding to this dilemma is that parents avoid addressing sex education with their intellectually disabled daughters (Aunos & Feldman, 2002). Firstly, parents do not know how to approach sexuality matters. Secondly, parents fear that it will encourage and add to the stigma that filling the gap in the sexuality knowledge of their children with intellectual disabilities will result in an increase in sexual activity (Grieveo, Lindsay & McLaren, 2006; Isler, Beytut, Tas & Conk, 2009).
One of the reasons why women with intellectual disabilities find it difficult to learn about their own sexuality is due to the training methods used to address the complex and emotionally laden construct of their own sexuality knowledge. Research indicates that within the disability field, women with intellectual disabilities are the silent voices in the knowledge of their sexuality (Hanna & Rogovsky, 1991).
For women with intellectual disability, the constant denial of the expression of sexuality has a detrimental effect on their confidence and self-worth (Bonnie, 2004). There exists a dearth of literature on how women with intellectual disabilities develop their sexual identity or conceptualise their own identity (Fitzgerald & Withers, 2011). In same cultures it is as if women with intellectual disabilities are viewed without gender and sexuality, with their only needs and desires being in relation to their intellectual disability. This denial of sexual identity in women with intellectual disabilities results in there being limited or no coherent literature available on how they conceptualise their sexuality or develop a sexual identity (Fitzgerald & Withers, 2011). However, there is coherent literature around how individuals who do not have an intellectual disability develop a sexual identity. Recent bio-psychosocial models have incorporated the influence of factors of the individual’s micro-social context, culture and religious influences into the development of sexuality (Fitzgerald & Withers, 2011). When applying these models to the sexual identity development of women with intellectual disabilities they would predict negative sexual identities, if taking into account the negative attitudes that exist towards the sexuality of women with intellectual disabilities both in the micro- social contexts and in the wider culture (Fitzgerald & Withers, 2011).
Acknowledgements
Abstract
Opsomming
List of Tables
List of Figures
List of Appendices
CHAPTER 1: Orientation
1.1 INTRODUCTION
1.2 PROBLEM STATEMENT
1.3 CHAPTER OUTLINES
1.4 DEFINITION OF TERMS
1.5 LIST OF ABBREVIATIONS
1.6 SUMMARY
CHAPTER 2: Literature Review
2.1 INTRODUCTION
2.2 SEXUALITY OF WOMEN WITH INTELLECTUAL DISABILITIES
2.3 ADDRESSING SEXUALITY NEEDS
2.4 ADDRESSING MISCONCEPTIONS
2.5 DISABILITY MODELS
2.5.1 Psychological Model
2.5.2 Medical Model
2.5.3 Social Model
2.6 DISABILITY AND SEXUALITY STUDIES
2.7 SOCIAL SYSTEMS THEORY
2.7.1 Policy System
2.7.2 Stakeholder System
i) Primary stakeholders: Right to sexuality education
ii) Secondary stakeholders: Caregivers at residential care system
2.7.3 Pedagogical System
2.8 DEVELOPMENT OF SEXUALITY TRAINING PROGRAMME
2.9 SUMMARY
CHAPTER 3: Phase 1: Qualitative data
3.1 INTRODUCTION
3.2 POLICY SYSTEM
3.2.1 Sexuality and Relationship Education
i) Policy
ii) Guidelines
3.2.2 Staff Support and Training
i) Policy
ii) Guidelines
3.2.3 Developing Tailor-Made Education Programmes
i) Policy
ii) Guidelines
3.3 STAKEHOLDER SYSTEM
3.3.1 Focus Group 1 with Staff of the Residential Care Facility
3.3.2 Focus Group 2 with Caregivers of Women with Intellectual Disabilities
3.3.3 Focus Group 3 with Women with Intellectual Disabilities
3.4 PEDAGOGICAL SYSTEM: DEVELOPMENT OF THE TRAINING PROGRAMME IN TERMS OF CONTENT
3.5 PROGRAMME DESIGN
3.6 PROPOSED TRAINING PROGRAMME
3.7 SUMMARY
CHAPTER 4: Phase 2: The aSeRT Training Manual
4.1 INTRODUCTION
4.2 FOREWORD
4.2.1 What is the Overall Purpose of the aSeRT?
4.2.2 What does the aSeRT Aim to Do?
4.2.3 What Exactly Can I Achieve by Attending this Training?
4.2.4 What does the aSeRT Offer?
4.2.5 What Icons Will Point You To Core Information?
4.3 THEME 1: APPROPRIATE AND INAPPROPRIATE TOUCH
4.4 THEME 2: PRIVATE TALK AND APPROPRIATE CONVERSATIONS
4.5 THEME 3: DIFFERENT TYPES OF RELATIONSHIPS
4.6 THEME 4: ROMANTIC RELATIONSHIPS
4.7 CONCLUSIONS
4.8 SUMMARY
CHAPTER 5: Phase 3: Quantitative Phase
5.1 INTRODUCTION
5.2 AIMS
5.2.1 Main Research Aim
5.2.2 Sub-aims
5.3 RESEARCH DESIGN AND PHASES
5.4 MATERIALS
5.4.1 Training Manual
5.4.2 Training Pack
5.4.3 Measuring Instrument
5.4.4 Training Evaluation Form
5.5. PILOT STUDY 1
5.5.1 Aims
5.5.2 Description of Setting
5.5.3 Participants
5.5.4 Procedures
5.5.5 Objectives, Results and Recommendations Following the Pilot
5.5.6 Summary
5.6 PILOT STUDY 2
5.6.1 Aims
5.6.2 Description of Setting
5.6.3 Participants
5.6.4 General Data Collection Procedures
5.6.5 Material
5.6.6 Summary
5.7 PILOT STUDY 3
5.7.1 Aims
5.7.2 Description of Setting
5.7.3 Participants
5.7.4 Procedures
5.7.5 Material .
5.7.5.1 Objectives, Results and Recommendations Following Pilot 3
5.8 MAIN STUDY
5.8.1 Participant Selection and Description
5.8.2 General Data Collection and Procedures
5.8.3 Material and Equipment
i) The aSeRT Training Manual.
ii) Measuring Instrument
iii) Training Packs
iv) Training Evaluation Questionnaire
v) Equipment
5.8.4 Data Analysis and Statistical Procedures
i) Descriptive Statistics.
ii) Data Reliability Measures.
iii) Inferential Statistics: Parametric tests
iv) Inferential Statistics: Non-parametric
5.8.5 Ethical considerations
5.9 SUMMARY
CHAPTER 6: Results and Discussion
6.1 INTRODUCTION
6.2 DATA RELIABILITY
6.3 CHANGES OBSERVED BETWEEN PRE-AND POST-TRAINING KNOWLEDGE
6.4 VARIABLES THAT INFLUENCED CHANGE IN KNOWLEDGE BETWEEN PARTICIPANT’S PRE- AND POST-TRAINING (DIFFERENCE) SCORES
6.4.1 Awareness of Sexuality Policy
6.4.2 Church Attendance.
6.4.3 Work Experience at the Facility.
6.4.4 Speaking About Sexuality to Women with Intellectual, Disabilities
6.4.5 Knowledge about Women with Intellectual Disabilities Prior Exposure to Sexuality Training
6.4.6 Age.
6.5 TRAINING EVALUATION
6.5.1 Planning
6.5.2 Training Material
6.5.3 Training Method
6.5.4 Length of Training .
6.5.5 Satisfaction
6.5.6 Recommendations for Further Training
6.6 SUMMARY
CHAPTER 7: Conclusions and Recommendations
7.1 INTRODUCTION
7.2 SUMMARY OF RESULTS
7.2.1 Phase 1
7.2.2 Phase 2
7.2.3 Phase 3
7.3 CLINICAL IMPLICATIONS
7.4 EVALUATION OF THE STUDY
7.4.1 Strengths
7.4.2 Limitations
7.5 RECOMMENDATIONS FOR FURTHER RESEARCH
7.6 SUMMARY
REFERENCES
LIST OF APPENDICES
