Facts of Life … And More, edited by Leslie Walker Hirsch. Baltimore: Brookes, 2007
Anyone who knows Leslie Walker Hirsch knows what a strong voice she has been for the social sexual rights of people with developmental disabilities. She has been integral in the establishment of the Social Sexual SIG of the American Association on Intellectual and Developmental Disabilities (AAIDD) and has co-written one of the most popular treatment programs in this area (Walker Hirsch & Champaign, 1986). Now she has taken her years of experience to paper by editing this book. In doing this, she joins an increasing group of people who have chosen this method to gain a broader audience for their work (e.g., Hingsburger & Melberg Schwier, 2000; Horn Anderson & Luvert, 2000). Did you know that there is a College of Direct Support with ethical codes, training standards, and certifications for those who directly serve individuals with disabilities? Did you know that there is a Rainbow Support Group that serves to promote the rights of people who are gay, lesbian, transgendered, and have a developmental disability? Did you know that there is an organization entitled Breast Health Access for Women With Disabilities, which advocates for increased participation of individuals in their own health care decisions? These are some of the many reasons to take a detailed look at this book.
Divided into four sections (Background, Cultural Issues, Risk Management and Treatment), this book has chapters authored or coauthored by experts in education, law, mental health, and medicine. This diversity of voice obviously lends a multitude of opinions and expertise. For example, Ruth Luckasson (attorney, professor, and past President of AAMR) coauthors the chapter on consent; John Rose (recipient of the AAMR Presidential Award for Leadership and director of the SIG on Direct Support Professionals) coauthors a chapter on risk management; long-time associate Marklyn Champaign, RN, MSW, details therapy for abuse survivors, and Walker Hirsch participates in writing many chapters. As is the case for many compilations, this diversity lends an inconsistency to the text at times. Some authors set up their chapters by defining key background terms, whereas others use terms without definitions. Some include references and resources, and others do not—an issue that may have been less noticeable with a combined reference and resource section at the end of the book. In addition to the diversity of writers, this book is directed toward a varied audience, including students, teachers, parents, and professionals. Unfortunately, the breadth of audience waters down the impact of the text at times.
The first section is written entirely by Walker Hirsch and details why this is an important area to address, the key components of sexual education, and how developmental issues interact with sexuality education. Using Piaget's stages, she describes the importance of developmental issues and how these may be represented within sociosexual education. Not surprisingly, she provides many examples that are tied to the Circles Program (1983). For those who know about this program, this serves as a reminder of its integrated aspects. For those who are unfamiliar with it, this section provides a substantial introduction.
The Cultural section provides some real gems, as the importance of this area is frequently minimized in this field. Indeed, there is a need to address the many cultural strands that come together to affect social sexual behavior and, thus, education. The author of the chapter on cultural diversity, for example, gently walks a line by giving many examples of how one's ethnic history can impact sexuality education without stereotyping any one group. Lacking, however, was information about how one can demonstrate respect for another culture while communicating the need to respect the dominant culture in which the behavior is occurring. A list of questions that would provide information as to the relative importance of culture to a particular consumer's life would also have been appropriate. In her chapter, Amy Gerowitz provides an exceptional review of historical issues in service delivery of social support. Even though I lived through most of the evolution from “patient” to “client” to “citizen,” I appreciated this walk through history and could reflect on the developmental stage of my own agency and the providers it contracts with. I was again confronted with the “graduation” mentality that so many agencies still operate under despite the call over 15 years ago now to dignity, choice, and person-centered programming.
Consumers are well-represented in this book, not only in the many vivid case examples given, but in two chapters in the cultural section devoted to the parent's perspective and to the stories of couples with developmental disabilities living loving lives. In the former chapter, co-authored by Emily Perl Kingsley and Leslie Walker Hirsch, many of the typical concerns that parents face in this area are addressed, including how hard it is to be reminded that your child has limitations via this discussion. Although the chapter is clearly written with many poignant points, there is a bit of a clinical feel about it; I had hoped more for some of the direct sincerity and personal reflection that “Welcome to Holland” (1987) had. This chapter focuses more on what parents can do as sexuality educators versus what a professional could do to assist parents on this journey. In a chapter entitled “In Their Own Words,” the love stories of several couples are beautifully told. These stories were compiled from Community Access Unlimited in New Jersey and summarized by Nancy Parello. I suspect that reading this chapter alone would help sway many who wonder about the ability of people with disabilities to live full, loving lives.
The section on risk management includes a review of many important areas raised in A Guide to Consent (Dinerstein, Herr, & O'Sullivan, 1999) and guides the attention of readers to paying attention to relevant areas of laws. The use of specific examples to illustrate the importance of awareness of regional laws may have helped to drive this point home. For example, laws regarding substitute judgment vary greatly from state to state. Contrasting two different states on this matter (which is done in the chapter on obstetrical care) would help readers understand the importance of knowing what is and is not allowed in their state. They cite the favoring of a perspective that requires people with disabilities to actively consent and acquiescence as a problem that may mask covert coercion. For me, the most useful chapter was definitely the one on managing risks. Not only is this chapter well written, but the authors tackle an important issue: It is often thought to be safer, liability wise, to prevent sexual behavior—but restriction is not an adequate risk-management strategy. They confront the need for agencies to have a truly diverse committee on sexuality that includes consumers, self-advocates, board members, and direct service personnel as well as the traditionally included legal, clinical, and management team members. Imagine the changes in decision-making that this would engender. The authors discuss the important issue of family information sharing versus HIPAA and suggest both long- and short-term solutions to risk management: “Only education and inclusion will help the public understand that any differences are singular and minimal while the similarities are universal and plentiful” (p. 212). The citations and resources in this chapter were invaluable.
In the last section on treatment issues, medical and psychological interventions are discussed. The Ob-Gyn Care chapter helps those giving and receiving these evaluations to ask the right questions in this medical partnership. The author traces all aspects of female treatment, from menstruation to birth control and delivery. It is a specific and informative chapter with the exception of excluding males, who also need this information. In the chapter on recovery steps, Champaign describes a process of therapy in a gentle and thorough way that would comfort those considering but unsure of taking this step. I disagree with the use of “androgynous pictures,” however, as a visual aid because I believe that this may further confuse an already confusing subject. The last chapter contains a discussion of therapy for sexual issues and details, among other things, the development of a sex kit to help direct appropriate self-stimulatory behaviors. Also addressed is the use of practice sessions with drawings, pictures, and pantomime to assist a couple with cerebral palsy to achieve satisfying intimacy. Any therapist who ascribes to the PLISSIT model of social sexual therapy would appreciate these specific suggestions.
In sum, this book does provide some unique insights and details some important trends in this field. More important, it continues the discussion. Sociosexual education has come a long way from when Sol Gordon's original work (1971) drew attention to this area, but we still have a long way to go before sociosexual rights for all people are a reality.