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How to talk about variations in sex development is a major theme for impacted individuals and families. This is the topic of Chapter 12. The author summarizes the research literature with caretakers and with adults about the difficulties of disclosure. Considerable criticism has been levied at health professionals for failing to role model affirming communication. For sure there are gaps in health professionals’ talk, but the biggest contributor to the difficulties is to do with the widespread misunderstanding about the biological variations. Psychological care providers are not there to put a cheerful gloss over clients’ negative expressions. However, they can be part of the favorable social condition in which a wider range of meanings about bodily differences are negotiated. In the practice vignette, the author highlights how tentative and uncertain the enabling process is, where a negative view of sex variations is still widely endorsed in the social context.
Difficulties with communication about bodily differences are strongly linked to sexual experiences. In Chapter 13, the author critiques the dominant ways of talking about sexuality in the wider society. These oppressive ideas can give rise to insecurities, self-objectification and body shame for people in general. Adults who have been medically managed are particularly vulnerable to the effects of objectification and shame. The author outlines typical components of sex therapy programs. However, rather than fix sexual problems, which can perpetuate people’s sense of inadequacy, the author suggests that psychological care providers support clients to process any trauma and develop a more relaxed and appreciative relationship with the body. This work, which requires generic therapy knowledge and skills, can be integrated with a range of specific sex therapy techniques and resources to reimagine a sexual future that focuses on bodily pleasure rather than gender performance. Although the practice vignette is built around a female couple, one of whom has partial androgen insensitivity syndrome, the care principles have wide applications for people with variations more generally.
Not all sex variations are apparent at birth. Sometimes they are internal and therefore not visible, that is, children are born looking like a typical boy or girl. The child may be brought to medical attention much later, for example when puberty does not follow the expected path. Many of these care users were not told the truth about their biological variation because adults believed that the information would harm them. At the same time, the care users also noticed that they were fascinating to health professionals, who may examine them in droves. Some of them did not discover the truth about their diagnosis and the treatment until mid-life.
For children whose external genitalia look different, when surgical safety and techniques improved, it became routine to align the urogenital anatomy of newborns and young children to the assigned gender. The gender-genitalia alignment was believed to be important psychologically for child and family. Because surgeons found it easier to feminize than masculinize the genitalia, most babies with genital variations were assigned female. From the 1990s, some of these adults have spoken out, talking of too many operations, been too often examined by too many and not understanding what was happening.
Biological variations in sex development, also known as intersex, are greatly misunderstood by the wider public. This unique book discusses psychological practice in healthcare for people and families impacted by a range of 'intersex' variations. It highlights the dilemmas facing individuals and their loved ones in the social context and discusses the physical and psychological complexities of irrevocable medical interventions to approximate social norms for bodily appearance and function. It exposes the contradictions in medical management and suggests valuable theoretical and practice tools for psychosocial care providers to navigate them. Uniquely featuring theory and research informed practice vignettes, the book explores interpersonal work on the most salient psychosocial themes, ranging from grief work with impacted caretakers to sex therapy with impacted adults. An indispensable resource for working ethically, pragmatically and creatively for a variety of healthcare specialists and those affected by variations in sex development and their families and communities.
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