Berenbaum: Management of Children With Intersex Conditions: Psychological and Methodological Perspectives
“Rearing children as intersex is not advocated by health professionals or activist organizations (including ISNA).” Thank you, Sheri!
“The lack of systematic outcome data makes decisions about genital surgery very difficult. There are insufficient data regarding the functional consequences of genital surgery, but there are also insufficient data regarding the effects on a child of living with atypical genitalia. It is likely that the effects of both genital surgery and genital appearance are not the same for all individuals. Perceptions of and responses to the situation may be more important than its objective nature, and psychological support may help families develop coping strategies to foster mental health. It is important to remember that decisions should be made in the best interests of the child and not the parents.”
Paediatric and Adolescent Gynaecology : A Multidisciplinary Approach. Essentially an intersex textbook with a significant emphasis on psychological care (and on issues such as psychological support) with chapters by clinical psychologists like Lih-Mei Liao, Julie Alderson and Polly Carmichael.
Balen, Adam H., Sarah M. Creighton, Melanie C. Davies, Jane MacDougall, and Richard Stanhope, eds. 2004. Paediatric and Adolescent Gynaecology : A Multidisciplinary Approach: Cambridge University Press.
Hester, J. David. 2004. Intersex(es) and alternative strategies of healing. Ethik in der Medizin 16:48-67.
———. 2004. Intersex(es) and informed consent: how physicians' rhetoric constrains choice. Theoretical Medicine 25:21-49.
———. 2003. Rhetoric of the medical management of intersexed children. Genders 38. Available from http://www.genders.org/g38/g38_hester.html.
The following are excerpts from a 1998 interview conducted by Alice Dreger and Cheryl Chase with an adult woman, identified here as “Sue,” and her mother, identified here as “Margaret.” Sue was born with a large clitoris, and against at least one physician’s recommendation, Margaret decided not to have a surgeon reduce the size of Sue’s clitoris.
Margaret came to this decision by following her practice of “examining the doctors.” She decided that the doctor who was bothered by Sue’s large clitoris was, like Freud, too phallic-centric. Having interviewed her obstetrician who saw many women with large clitorises and having been assured by the obstetrician that those women did well, Margaret decided to leave decisions about clitoral surgeries to Sue herself.
The Intersex Society of North America (ISNA) is the premier resource for people seeking information and advice about atypical reproductive anatomies and disorders of sex development (DSDs). Since our founding in 1993, we have been offering policy advice, positive advocacy, and caring support for individuals and families dealing with DSDs. You can also obtain our more extensive Handbook for Parents by visiting www.dsdguidelines.org.
The following are questions we suggest you ask your child’s medical care providers. We also suggest you take and keep careful notes so that you keep track of your child’s medical history and all your options
ISNA works hard to educate the world about intersex. Over the last 11 years of our work, we have reached millions of people through our outreach work! Here's a small sampling of what we've been up to in just the first half of this year.
Just since January 2004:
Another special issue on intersex. See table of contents at the BJU International (British Journal of Urology).
Most anguished title award goes to "How to make the least bad choice in children with ambiguous genitalia", by P.D.E. Mouriquand.
Presented at the First World Congress: Hormonal and Genetic Basis of Sexual Differentiation Disorders, Tempe Arizona, May 17-18 2002
Chase, Cheryl. "What is the Agenda of the Intersex Patient Advocacy Movement?" Endocrinologist. 13(3):240-242, May/June 2003. Download pdf version.
Today, almost a decade after the Intersex Society of North America was founded, many people still misunderstand what criticisms the intersex patient advocacy movement makes of standard practice, and what reforms we are asking for. I’m pleased to have this opportunity to provide a summary of our recommendations for patient-centered care, and to contrast them with the current state of medical practice.
In what may be the first U.S. court decision to consider the constitutional rights of intersexuals, U.S. District Judge Clarence A. Brimmer ruled on February 18 in DiMarco v. Wyoming Department of Corrections, 2004 WL 307421 (D. Wyoming), that state prison officials violated the 14th Amendment Due Process rights of Miki Ann DiMarco when they consigned her to 14 months in a dungeon-like high security lock-up without affording any kind of hearing process for her to challenge that decision.
Seven Oaks Magazine interviewed ISNA's board chair Alice Dreger earlier this month.
Hui, Stephen. 2004. SEVEN QUESTIONS: Alice Dreger. Seven Oaks, June 7. Available from http://www.sevenoaksmag.com/questions/16.html.