The Ultimate Guide to Sex and Disability.(Book review)

The Ultimate Guide To Sex And Disability. Miriam Kaufman, M.D., Cory Silverberg, and Fran Odette. Illustrated by Fiona Smyth. (2003). San Francisco, CA: Cleis Press. 345 pp. Paper. ISBN 1-57344-176-7.

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 ...