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Manoeuvres in the dark: Re-creating (new) stories about sexuality and the body within/by women with a spinal cord injury
Book - Dissertation
This PhD-project entails an in-depth, contextualised exploration of how women with spinal cord injury (SCI) relate to their body and the manoeuvrability that they experience to have when it comes to pleasurable and satisfactory intimacy with one's self and other(s) through one's body. It is a qualitative inquiry that focuses not only on what it 'means' for participants to live with a changed body, but rather on how re-exploration journeys of their body as pleasure can close and open up in interdependence with the people around them, with the discourses they are exposed to and intra-act with, and with the materiality of their lives. The method of knowledge making/gathering that was used in this PhD-project could best be described as auto/ethnographical. The dissertation reflects a process of constantly zigzagging between participants' stories and the researcher's own experiences on the continuum from ethnography to autoethnography (Denzin, 1997). Data gathering methods (including dance, photography sessions, individual interviews, focus group) aimed to provide the participants with different routes or opportunities to reflect on their experiences of the bodies in/with/through which they live and on their intimate relationships in the past, present, and (what they expect and hope for the) future, sometimes resulting in a transformation of their sense of self and their bodily expression potential. Phenomenology—and more specifically interpretative phenomenology (Smith, Flowers, & Larkin, 2009) and post-intentional phenomenology (Vagle, 2014)—was used as a method of analysis and as a way to both ground the inquiry in the life world of the participants and, on a broader level, take into account the material-discursive practices at work.The chastity belt as a metaphor captures how participants often felt limited in their potential to have a sexually fulfilling life, due to, alongside the loss of sensation and mobility in/with their SCI-affected bodies, (1) how their bodies and interaction with their bodies are medicalised by healthcare professionals and, depending on the balance caregiver vs. romantic partner and the balance care-asker vs. (independent) woman, also by their partner and themselves (e.g., need for assistance for washing/undressing/toilet/transfers); (2) how intimacy and bodily pleasure have become something reasoned rather than spontaneous (e.g., strict bladder and bowel management prior to and after sex to minimise risks of leakiness, determining feasible positions and accessible locations, time management due to longer time and assistance needed for undressing and re-dressing); and (3) how pre-SCI patterns of expectations and definitions of satisfying sexual pleasure reflect the performance-based and genital-focused approach to sex widespread in Western society (e.g., simultaneous orgasm, orgasm as necessary climax, penetration, spontaneity, independence, taking initiative with no initiative considered to be passive, etc.). However, for most, sexuality and experiencing pleasure through the body was still seen as an ongoing journey, in which the re-exploration of potential was achieved by talking with people in similar situations, communicating their desires to their partners, material accommodation (e.g., accessible sofa, accessible double bed (which is hard to get reimbursed by social services) instead of a single bed), being invited to experiment with body positions and explore bodily sensations, hearing/feeling that desires to be intimate and naked are nothing to be ashamed of and are legitimate topics to discuss with healthcare professionals, becoming more confident that they were the owners of their body, etc.