Making sense of sex with people with Cerebral Palsy

Abstract

Constructions of sexuality and disability have been discussed widely by scholars across a number of fields. However, there has been relatively little research on how people with Cerebral Palsy construct their own sexuality and the salience of the socio-sexual schema which are involved in this process. As such this study aimed to address three questions; 1) the relative salience of public, interactional and private sexual schema in the construction of sexuality for people with Cerebral Palsy, 2) how people with Cerebral Palsy construct sexual participation, and particularly sexual spontaneity and, 3) how people with Cerebral Palsy describe their sexuality. This project utilized a hermeneutic phenomenological approach to explore these questions. In doing so, this study helps fill the gap between how sexuality and disability is constructed external to the individual and how the individual constructs their own sexuality. For this research, seven in-depth, semi-structured interviews were conducted with five men and two women with moderate to severe Cerebral Palsy. Participant data indicated that how people with Cerebral Palsy perceive sexual experiences with others (interactional) is the most influential factor in the construction of their sexuality. Public influences were cumulatively the second most important factor in the construction of sexuality by people with Cerebral Palsy. Finally, private influences were cumulatively the least influential factor in the construction of their sexuality. Sexual spontaneity primarily was a derivative of sexual exploration. Furthermore, participants defined sexual spontaneity as liberating and allowed them to experience their sexuality with others relatively independent of normative sexual scripts. Participants also described their sexuality primarily in terms of major transitions and experiences which involved others. Based on the findings sexual theory needs to be more cognizant of sexual agency as primary in the construction of sexuality with significant disability. In addition, healthcare providers and people with Cerebral Palsy are likely to be successful partners in sexual health when they promote positive and agentic constructions of sexuality with significant disability. The findings emphasize that people with Cerebral Palsy are cognizant and intelligent agents in the construction of their sexuality. Their articulations, understandings and descriptions of their sexuality demonstrate their interest and awareness in their sexuality and issues related to it. People with Cerebral Palsy are sexual agents and beings who empower themselves.