What about my sexuality? : parents' attitudes towards the sexuality of their youth with Down's Syndrome

Abstract

Background: People with intellectual disability (ID) tend to be seen as asexual by society, partly due to the infantilizing approach adopted by their parents and professionals or conversely viewed as hyper-sexual and oversexed (Shakespeare, 1997). Stereotypical views about the sexuality of people with disability underpin stigma and social exclusion (Azzopardi Lane, 2017). Emerging adulthood raises similar challenges for young people with ID as it does for other young people, including issues with developing a sexual identity, sexual expression and development and the navigation of intimate relationships. As adolescents with Down Syndrome (DS) progress into adulthood, it is very likely that the parents will be one of the few, if not their only sources of sexual education should they opt to give any (Sant'Anna et al., 2010). Parents tend to have worries about the sexuality of their youth and report that they are often unable to answer all of the questions in an understandable way, so these questions are often overlooked (Cuskelly & Bryde, 2004). Aim: This research closely analysed the diverse attitudes in the local scenario adopted by parents towards the sexuality of their youth sons and daughters with DS, the kind of support they were giving, the limitations they were imposing, and the reasons behind their beliefs. It also explored how these opinions, attitudes and beliefs affect the DS community. The most intriguing aspect of this study is that locally no other study has been conducted that revolved around DS and sexuality. In view of these facts, the aim of the study is to shed light on the parents' attitudes towards the sexuality of their youth with DS. Parental experiences, perspectives, and expectations ought to provide a glimpse of their position in our local scenario. Method: The study was guided by a number of the core principles of the emancipatory disability research paradigm and the social model of disability. Methodology: There were two stages in this research: a preliminary methodological stage, and an actual data collection stage. The preliminary methodological stage aimed to reach the core emancipatory disability research principles. Thus, in the preliminary methodological stage I held a focus group with youth with DS, where the youth acted as an advisory group to help me draw their main views on the topic at hand. Furthermore, after the most poignant themes were illustrated, I set the interview guide, which was then used in the actual stage for data collection, where the interviews with six parents of youth with DS aged between 18-29 years of age were conducted. The interviews were then transcribed, and the data was analysed through the use of thematic analysis (TA). Five main overarching themes dominated the data analysis. These were, Intersecting Identity, Sexual Expression, Abuse, Sex Education and Social Perceptions. These main overarching themes (1st order) subsequently branched out into sub-themes (2nd order) and sub-subthemes (3rd order) using a three-level coding system. Results: Possibly due to cultural taboos and stereotypical notions on sexuality of youth with DS, parents had different perspectives and even conflict within themselves on their youths' sexuality. The social perception of the disabled identity has an effect on the constructed sexual identity of youth with DS. Thus, it is shown that legislation, empowerment and a change in power dynamics can help create better opportunities for the construction of sexual identity for persons with ID. Gender and culture, especially the religious dogma affected the parental perceptions of the youth with DS; although the Maltese society has been less influenced by religious teachings in recent years. Education and awareness on the sexual rights for people with ID was found to be the key to move forward and progress; both for the youth and for their parents. These emerging themes were further discussed in context of the local scenario, and in both local and international literature, with insights from the social model of disability. Recommendations: A number of recommendations emerged from this study such as; raising awareness with regard to people with intellectual disability (ID) and their sexual rights, whilst moving away from the social notion that people with disability are asexual. The findings of this study will be used as a tool for education, aimed at youth with DS and their parents.