The Ultimate Guide to Sex and Disability.
Althought there is a considerable body of research literature on sexual issues affecting people with physical disabilities, the topic does not draw much public attention. In fact, a strong cultural emphasis on independence, physical perfection, and orgasm precludes a public discourse on sexuality which affirms and celebrates the sexuality of individuals with physical disabilities (Galvin, 2005; Topper, 2000). As a result, many of those with physical disability may feel undesirable and undeserving of the sexual pleasure others usually take for granted (Galvin, 2005; Topper, 2000; Murray & Harrison, 2004; McCabe & Taleporos, 2003). These biases are reflected by uninformed, inadequate, or absent representations of physical disability in all forms of media, including sexual self-help guidebooks (Coble, 1997).
Coble (1997) recommended that a sexuality manual capable of truly addressing the needs of a physically disabled population, should include discussions of specific and diverse disabilities, a wide range of possible sex acts (including non-physical acts, such as gazing and fantasy-sharing), concrete practical suggestions, alternatives to traditional sensate focus, and privacy. The Ultimate Guide to Sex and Disability fulfills each of these criteria, resulting in a comprehensive, empowering text, emphasizing self-awareness, self-respect and pleasure.
The Ultimate Guide to Sex and Disability is primarily intended for an audience living with physical disability, and while it is easily accessible for individuals with limited sexual experience and education, the range of information is broad enough that virtually everyone can learn something new. The authors have based The Ultimate Guide on existing research, personal experiences, and information gathered from an informal Internet and phone survey. It is divided into fifteen chapters" covering myths, desire and self-esteem, physiology, communication, masturbation, oral sex, penetration, toys and other erotic materials, yoga and Tantra, S/M, safer sex, and sexual violence. The authors also provide "one of the most extensive collections ever of user-friendly resources on sexuality and disability" (xi), including books, films, and online information. Finally, they include a brief glossary clarifying their use of gender- and sex-related terms.
The tone of the book, aided greatly by quotes from survey participants and the use of the collective "we", creates a sense of inclusion and normalization. The authors avoid value judgments, and frame the mainstream definition of sex as heterosexual-intercourse-to-orgasm as merely one of an unlimited number of sexual possibilities. This is of particular importance, as certain sexual behaviours and positions may not be possible or enjoyable for all individuals, and, indeed, are not necessarily predictive of sexual satisfaction among people with disabilities (McCabe & Taleporos, 2003). While the approach remains non-prescriptive, readers are provided with practical, specific, and creative suggestions for positions, communication techniques, sex toys, and solutions to problems of privacy.
Although the language used is generally quite accessible, potentially difficult terms are occasionally left unexplained. For example, the casual use of the term "trached" (in reference to tracheotomy; p. 150) was left undefined, although it is likely unfamiliar to those who have no personal experience with one. The great care taken to elaborate on even relatively basic concepts suggests that the few missed terms were oversights.
Readers of The Ultimate Guide are encouraged to engage in extensive self-exploration of their bodies and minds, and to create their own boundaries based on what they personally feel comfortable with. The reclamation of sexuality from what may be a "sense of alienation from our bodies and our sexual response" (p. 53), due to trauma, medicalization, and shame is portrayed as difficult yet necessary. Indeed, this contention has been supported by recent research, which has shown that the development of a positive self-image is reliant on externalizing the impressions of others (Galvin, 2005). The rejection of negative stereotypes, as advocated in this book by Kaufman, Silverberg, and Odette, is surely a first step towards empowerment and healthy sexual expression.
The empowering tone of the book is exemplified in the authors' allusion to the potential benefits to being physically disabled, a sentiment often advocated by the disability rights movement (e.g., Galvin, 2005). For example, the authors suggest that people who have had to learn creative ways of expressing themselves may have an advantage when it comes to sexual communication (p. 79). Others writers in the field of sex and disability have also proposed that, as the sex play of disabled individuals may move out of the realm of convention, the exploration of pleasure is less constrained by social norms and expectations (Galvin, 2005; Tan, Waldman, & Bostick, 2002). This advantage may been seen in other social contexts, such as work; Galvin (2005) suggested that disabled individuals are not expected to conform to set social roles, and thus may be freer to create a lifestyle tailored to the individual. In other words, disability acts as a catalyst allowing non-disabled (heterosexual) norms (viewed here as limitations) to be discarded in a quest for more personally relevant definitions of "self" and "sex".
The authors have clearly taken great pains to try to ensure their readers' safety and well-being. For example, they caution that old traumas may arise during sexual self-exploration, and that, before embarking on such a journey, the reader should consider their resources for emotional support (p. 31). However, the effectiveness of containing safer sex information in a single chapter near the end of the book is questionable. If readers look at only the chapter or chapters that address their specific concerns they may fail to see vital information found only in the "Safer Sex" chapter. One might conclude that the purpose of placing this information in a single chapter near the end of the book was to avoid tainting an otherwise joyful celebration of sexuality with finger-wagging lectures about safety and serious consequences. This is perhaps a particularly important consideration for a population that faces pervasive sexual discrimination. However, more frequent references to the sexual health chapter might provide a stronger message of safety, while maintaining a positive tone.
The glossary at the end of The Ultimate Guide, may disappoint some readers. While it may clear up readers' confusion in understanding sexual identity versus sexual orientation, and provide a current list of definitions of gender-related terms, it will not offer the neophyte a satisfying list of basic sexual terminology. Although this would have been a daunting task, and was clearly not the authors' aim, labelling the glossary more clearly--perhaps, "Glossary of Gender and Sexual Identity Terms"--might have better reflected the content.
While the authors note that The Ultimate Guide to Sex and Disability is not the "ultimate" guide to sex and disability, it is difficult to imagine a more thorough, accessible, and genuinely practical resource. This book carries a message of empowerment that will benefit all who read it, and is highly recommended for readers with physical disability, friends and partners of disabled individuals, researchers, as well as a general audience.
Coble, A.C. (1997). Editorial: Self-help or self-harm: When people with physical disabilities read sexual self-help books. Sexuality and Disability, 15, 61-68.
Galvin, R.D. (2005). Researching the disabled identity: Contextualizing the identity transformations which accompany the onset of impairment. Sociology of Health & Illness, 27, 393-413.
Kaufman, M., Silverberg, C., & Odette, F. (2003). The Ultimate Guide to Sex and Disability. San Francisco: Cleis Press.
McCabe, M.P. & Taleporos, (3. (2003). Sexual esteem, sexual satisfaction, and sexual behavior among people with physical disability. Archives of Sexual Behavior, 32, 359-369.
Murray, D.D. & Harrison, B. (2004). The meaning and experience of being a stroke survivor: An interpretative phenomenological analysis. Disability and Rehabilitation, 26, 808-816.
Tan, G, Waldman, K., & Bostick, R. (2002). Psychosocial issues, sexuality, and cancer. Sexuality and Disability, 20, 297-318.
Tepper, M.S. (2000). Sexuality and disability: The missing discourse of pleasure. Sexuality and Disability, 18, 283-290.
Reviewed by Jenny Scott and Terry Humphreys, Ph.D., Psychology Department, Trent University, Peterborough, Ontario.
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|Author:||Scott, Jenny; Humphreys, Terry|
|Publication:||The Canadian Journal of Human Sexuality|
|Article Type:||Book review|
|Date:||Mar 22, 2006|
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