Re/developing models for understanding sexuality with disability within rehabilitation counselling.

Author:Dune, Tinashe M.
Position:Author abstract


The relatively recent inclusion of sexuality in rehabilitation is based on the theory that all people have a right to sexual education, intimacy and intimate relationships (Parker, 2007). According to the World Health Organization (2012) sexual rights include "the right of all persons, free of coercion, discrimination and violence," to attain the highest possible "standard of sexual health, including access to sexual and reproductive health services". Sexual rights further include the right to seek, receive, and pass on information about sexuality and the right to sexuality education. Foremost, sexual rights encompass "the right to have one's bodily integrity respected and the right to choose--to choose whether or not to be sexually active, to choose one's sexual partners, to choose to enter into consensual sexual relationships, and to decide whether or not, and when to have children" (Parker, 2007). In addition, research has shown that sexuality is a key component for psychosocial wellbeing (Grov, Parsons, & Bimbi, 2010; Niet et al., 2010; Street et al., 2010). According to the World Association for Sexual Health (2012) "sexual health is more than the absence of disease. Sexual pleasure and satisfaction are integral components of well-being and require universal recognition and promotion". Considering these conventions sexuality would be well placed within rehabilitation counselling as it can address potential sexual issues and provide understanding and education about sexual choices, sexual health, sexual negotiation and acknowledges the need and/or desire for satisfying sexual relationships.

Sexual Script Theory and Disability

According to Simon and Gagnon (1986, 1987, 2003) human sexuality is constructed via public, interactional and private sexual scripts. Public sexual scripts describe who is an appropriate sexual partner (Simon & Gagnon, 1986). However, this often excludes individuals with disabilities and their experiences of sexuality (Guildin, 2000). If people with disabilities are excluded from public (i.e. popular culture) portrayals of sexuality they may subsequently be excluded from sexual opportunities and be perceived (by themselves and others) to be unviable sexual partners (Dune, 2012a; Overstreet, 2008). Exclusionary constructions of sexuality with disability have a detrimental impact on how people living with cerebral palsy experience their sexuality (see Rurangirwaa, Van Naarden Braun, Schendel & Yeargin-Allsopp, 2006; Wazakili, Mpofu & Devlieger, 2009; Xenakis & Goldberg, 2010). Lawlor et al. (2006), for instance, indicated in their qualitative research on families of children with cerebral palsy that "reported barriers to participation were the attitudes of individuals and the ingrained attitudes of institutions". The attitudes of strangers towards the child and family which altered the choice of activity for some families" (p. 225). Thus sexual participation and negotiation as mediated by public and interactional sexual scripts may discourage sexual behaviour with people with a disability. As such, people with disabilities as well as typical others may internalize sexual scripts which ignore the variance in the human condition and experience (Esmail, Darry, Walter, & Knupp, 2010; Rembis, 2009). Without an appropriate model for sexuality with disability to inform rehabilitation counselling people with impairment may be relegated to expressing their sexuality within the confines of typical and performance-based frameworks.

Questioning Models of Sexuality with Disability

It is widely acknowledged within the field of rehabilitation that human sexuality is integral to clients' quality of life and overall wellbeing (Brashear, 1978; Esmail, Darry, Walter, & Knupp, 2010; Rembis, 2009; Wiwanitkit, 2008). While incorporating aspects of sexuality into rehabilitation counselling is imperative to overall quality of life and wellbeing, the model, or lack thereof, upon which this is enacted, may be inherently exclusionary. Considering that sexuality is a relatively recent addition to the rehabilitation repertoire (Esmail, Darry, Walter, & Knupp, 2010; Rohleder & Swartz, 2012; Schulz, 2009) rehabilitation counselling, which strives towards an integrative/social model, has yet to comprehensively integrate this aspect of human experience within pedagogy or practice (Dune, 2012b). As such, rehabilitation counsellors may use the medical model of sexuality, popularised within typical populations, to address the "problem" of "limited" sexual performance and functioning in an effort to 'help' the client achieve near typical levels of sexual participation (see Mckee & Schover, 2001 on sexual rehabilitation after cancer).

This framework coincides with the type of hegemonic performance-based construction of sexuality perpetuated within public sexual scripts (i.e., popular culture, movies, television and magazines, see Guildin, 2000; Overstreet, 2008).

A medical and performance-based approach to sexuality with disability ignores the possibility that people with chronic disability (such as cerebral palsy) may construct, adapt and ascribe importance to sexual scripts differently than their typical peers (see also Rembis, 2009). This may be the case particularly considering that people with chronic disability are not often represented as sexual partners or sexual beings within sexual scripts in media. Without this recognition or representation rehabilitation counsellors may provide sexual advice, if at all, with models of typical sexual functioning and negotiation in mind. This is to say that while rehabilitation counselling may be well equipped to assist people in employment and community they may not be adequately equipped to address some of their clients' major concerns about sexual participation and negotiation.

Preliminary Conceptual Model

Sexuality and how people with cerebral palsy construct their sexuality is influenced by several explicit and implicit public, interactional and private factors. Therefore, a preliminary model that highlights these interactions was developed (see Figure 1). This model aimed to inform and support the hermeneutic phenomenological approach for the collection and analysis of data. Hermeneutic phenomenology was used as it studies interpretive structures (in this research sexual scripts and sexual constructions) of experience, how people engage with and understand these experiences in relation to ourselves and others (Stanford Encyclopedia of Philosophy, 2008). With its foundations in philosophical studies, hermeneutic phenomenology is useful for examining how public, interactional and private meanings are deposited and mediated through myth (i.e., myth that everyone should express sexuality in the same ways), religion (i.e., constructions of heterosexuality), art (i.e., erotica), and language (i.e., popular culture and interactional discourse). Ultimately, hermeneutic phenomenology aims to answer questions about the meaning of being, the self and self-identity (van Manen, 2002). This paper subsequently presents the modification of the following model based on the evidence gathered through this methodological lens.

Figure 1 illustrates how public, interactional and private scripts were proposed to influence the creation of individual sexuality. The preliminary model also includes specific elements of public, interactional and private scripts which influence constructions of sexuality and sexual identity in people with cerebral palsy. This model illustrates that sexual scripts are not directionally influential but are interdependent and constantly informed by factors like history, media, interactive sexual scripts and sexual self-concept(s). While this may be the case for all populations, the study was particularly interested in the influence and experiences of disability on individual constructions of sexuality.

This model proposes that factors such as the severity of one's disability (through experiences of exclusion), the expectation to experience life like typical others and interactions with parents, family and peers, have an interdependent effect...

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