ISNA's blog

Soundprint Radio looks at intersex

Classification: Recent Publications

Intersex, a 30 minute radio program produced by Dheera Sujan of Radio Netherlands is part of Soundprint’s international documentary exchange series, Crossing Boundaries. Listen online in Real Player format as a group of women with AIS talk about their lives.

“Not telling people about your condition is more difficult than having the condition itself.”

“We appeared on tv as a kind of protest against doctors who are still saying that no one should talk about this. We showed them that we can tell 900,000 people about it, and nothing bad happened to us. In fact, we had nothing but positive reactions.”

Effects of Clitoral Surgery (Minto et al)

“Our results indicate that individuals who have had clitoral surgery are more likely than those who have not to report a complete failure to achieve orgasm and higher rates of non-sensuality—in particular, a lack of enjoyment in being caressed and in caressing their partner’s body.”

“Our findings suggest that adult sexual function could be compromised by feminising clitoral surgery. Infants and young children are powerless to oppose any procedures, so genital surgery for them is not just a medical issue but also a moral one. Debate over ethics with interested parties should be encouraged and clinicians should advance the debate and help individuals and families to make the best possible decisions by producing reliable information. Many surgeons will undoubtedly feel justified in doubting the findings of this study, and will fall back on the traditional response of claiming that current techniques are more advanced than the surgical procedures we assessed. Although surgery has advanced in many ways, this is not a valid reason for complacency. In this study surgery was done 8-40 years ago, and most individuals had undergone clitorectomy. Of the three sexually active participants who had undergone the newer technique of nerve-sparing clitoral reduction, however, two had the worst possible score for orgasm difficulties(orgasm subscale score of 9).”

Berenbaum: Management of Children With Intersex Conditions: Psychological and Methodological Perspectives

Classification: Recent Publications

“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.”

Physician's Rhetoric and Intersex Management

Classification: Recent Publications

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.

Tips for Parents

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

The Management of Ambiguous Genitalia. Proceedings of a symposium. Lyon, France, April 2003

Classification: Recent Publications

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.

Sacramento Bee looks into intersex

Classification: Recent Publications

The medical profession has traditionally viewed an intersex birth as a "social emergency," pushing to assign a child's sex immediately and perform corrective surgery as soon as possible, says Celia Kaye, a professor of pediatrics at the University of Texas Health Science Center at San Antonio. Doctors want to avoid traumatizing parents and help the child grow up normally, without confusion or ridicule, she says.

Read the complete article at the Sacramento Bee.

What’s happening at ISNA in 2004?

Classification: News

In 2004 ISNA’s energies are focused on reforming U.S. medical education with regard to intersex.

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