Conceptualizing Sex with Cerebral Palsy: A Phenomenological Exploration of Private Constructions of Sexuality Using Sexual Script Theory

Abstract

This study explored how people with cerebral palsy (CP) negotiated and perceived their sexual interactions with others. In doing so, this research discusses participant conceptualizations of sexuality with CP. In-depth, semi-structured interviews were conducted with two women and five men with moderate to severe cerebral palsy from Canada and Australia. The interview discourse focused on how, if at all, private/internal constructions of sexuality influenced the way in which participants expressed and negotiated their sexuality. Interview data were thematically analyzed using NVivo and manual line-by-line analysis. Notably, accepting oneself was important to people with cerebral palsy’s sense of sexuality. By critically discounting exclusionary or negative sexual schema, people with cerebral palsy learn to be more accepting of their abilities and attribute positive conceptualizations to themselves and their sexual identity. Participants had mixed perceptions of body esteem as an aspect of their sexuality. Downward social comparisons were associated with positive body esteem. Negative body esteem could be an after effect of the lack of resources to support people with cerebral palsy in their sexual participation (i.e., sexual surrogates, workers, sexual facilitation from care providers, privacy or accessibility to transport) (see Earle, 1999). Participants also believed their sexual agency was constrained. For instance, they were apprehensive about explicitly asking for what they required from a sexual partner for fear that they may seem overly demanding, which could frustrate a sexual partner or end a relationship. For people with CP personal agency yields more satisfying socio-sexual outcomes. The present study suggests that people with cerebral palsy do in fact recognize that being sexually agential would increase their sense of sexual satisfaction and empowerment. Further, participants believed that sexual agency could be enhanced with personal effort. In this regard, the ability to make (and exercise) choice when negotiating sexuality reinforces conceptualizations of oneself as a sexually desirable being.