A recent article entitled “Adult Genital Surgery for Intersex: A Solution to What Problem?” by Mary E. Boyle, Susan Smith, and Lih-mei Liao suggests that genital surgeries among adult women with intersex conditions present dilemmas similar to those involved with infant surgeries.
After conducting interviews with six adult women who chose to undergo genital surgeries as adults, the authors concluded that the women in their study often experienced little or no dilemmas surrounding the choice to have surgery but that the women felt conflicted after surgery. Prior to surgery, the women in the study believed that having surgery would “confer normality” and help them feel they were entitled to intimate relationships. The interviews also revealed that the physicians caring for the women in the study often presented surgery as unproblematic course of action and that for some of the women challenging medical authority—even as adults—was very difficult.
Many U.S. physicians continue to dismiss the results from the London group of researchers, documenting poor outcomes from early genital surgery, as irrelevant. At a recent European Society for Pediatric Urology conference, a Swedish group reported similarly poor genitoplasty outcomes.
RESULTS:47 women had been operated, more than 50% had been operated at two or more occasions. 11 patients had only vaginoplasty done and in the remaining women it was combined with clitoroplasty. The cosmetic appearance as well as the function of clitoris and vagina are often not optimal. There is also a need from these patients to be able to discuss former surgery, especially since it was common in this group to state that the functional result has influenced their sexual life negatively.
I’ve been updating my references database, and I continue to be impressed by the sophistication of the work coming from UK professionals on intersex issues. These articles are a great example.
- Alderson, J, A Madill, and A Balen. 2004. Fear of devaluation: Understanding the experience of women with androgen insensitivity syndrome. BJ Health Psychol 9 (1):81-100.
- Liao, Lih-Mei. 2003. Learning to assist women with atypical genitalia: journey through ignorance, taboo and dilemma. J Reprod Infant Psychol 21:229- 38.
- Boyle, Mary E., Susan Smith, and Lih-Mei Liao. 2005. Adult Genital Surgery for Intersex: A Solution to What Problem? Journal of Health Psychology 10 (4):573-584.
Vaginal surgery generally requires a kind of post-operative care called “vaginal dilatation.” After surgery, the tissue tends to get smaller while healing. In order to keep the vaginal opening from closing up, the patient (or her mother or a doctor, in the case of an infant or child) is instructed to insert an object into the vagina, pressing against the scar tissue, on a regular basis.
When performed on a child, vaginal dilitation can be emotionally scarring for both child and parent. This is one reason why many experts recommend that vaginal surgery not be performed on children with DSDs (Disorders of Sex Development) — rather, it should be made available to patients who are at least adolescent, who can understand the reasons for the procedure, and who can do the necessary vaginal dilitations themselves (if the patient is not motivated to do this, then the surgery should obviously not be performed). The surgeon’s argument that vaginoplasty can be completed with a one-stage procedure on an infant has been roundly refuted — follow up surgery will almost always be required as the patient enters adolescence. Avoiding vaginal surgery on infants and children also allows for the patient (as an adolescent or adult) to try manual pressure dilation, which has been quite successful for many women who escaped vaginoplasty.
Last night I was shocked and horrified as I watched the plot of Fox’s popular medical drama, “House,” unfold. Fans of the show stay tuned each week to see Dr. Gregory House take on medical mysteries with a sarcastic wit and his own special personality. Last night’s episode, entitled “Skin Deep,” proved that much more is flawed about this show than the protagonist. It was, without a doubt, one of the most offensive and hurtful portrayals of people with intersex conditions that I’ve ever seen.
For those who didn’t see the show, allow me to summarize the painful episode. A 15 year old supermodel presents with mysterious symptoms, such as erratic behavior and uncontrollable twitching. Throughout the show, much is made of her feminine physique, with comments about her beautiful breasts and buttocks playing a lead role in the dialogue—even among the doctors. In the course of searching for a diagnosis, the medical team discovers that the young woman has been using heroin and that her father sexually abused her once while he was intoxicated. After ruling out effects from the heroin and possible post traumatic stress disorder resulting from the sexual abuse, House finally reaches the conclusion that the young supermodel must have cancer and a series of scans reveal internal testes that are malignant.
We are thrilled to announce that the Arcus Foundation has renewed funding for ISNA with $50,000 per year to help cover our 2006-2008 operating expenses! Arcus Foundation has been a key supporter of ISNA’s work since 2001, but this is the first time ISNA has secured ongoing funding from the Arcus Foundation.
Created in 2000 as a family foundation, the Arcus Foundation seeks to contribute to a pluralistic society that celebrates diversity and dignity, invests in youth and justice, and promotes tolerance and compassion. Initiated by Jon L. Stryker and Robert E. Schram, the foundation was formed in the belief that all individuals have a right and responsibility to full participation in our society and with the conviction that education and knowledge can be an antidote to intolerance and bigotry. Arcus has been ISNA’s strongest foundation sponsor since 2000.
We’re often asked why ISNA doesn’t forcefully advocate for a genderless society. Many times, these questions come from people with a genuine interest in gender studies and educating people about intersex. The truth is that we share lots of common ground with people in the humanities and/or activist communities who have fought long and hard to insure that the voices of marginalized people are heard.
When women of color told feminists that their lives weren’t reflected in theories that assumed white experience to be universal, scholars listened. When queer people came forward to say that theories of gender that neglected sexuality often fell short of capturing the realities of their lives, scholars listened. Without a doubt, scholars have a rich history of taking the voices of marginalized people seriously and changing their theories and practices accordingly, and now ISNA asks that scholars listen to what people with intersex conditions have to say—even if it might not be what they’d like to hear.
The Winter 2005 issue of the Harvard Civil Rights-Civil Liberties Law Review features an article about intersex. The article, entitled Intersex Surgery, Female Genital Cutting, and the Selective Condemnation of ‘Cultural Practices’, discusses the similarities between female genital cutting (FGC) in African and Asian countries and the cosmetic genital surgeries performed on intersex infants in the West. Written by Nancy Ehrenreich with Mark Barr, the article suggests that although people in the West often medicalize the cosmetic genital surgeries currently performed that these procedures, much like FGC, have cultural roots.
A new article just published in the Journal of Pediatric Endocrinology and Metabolism makes a compelling case for getting rid of all medical terms based on the root “hermaphrodite.” The authors (including two ISNA staff members and three ISNA Medical Advisory Board members) explain the problems with terms like “pseudo-hermaphroditism” and “true hermaphroditism.”
Why get rid of these terms? Because:
- These terms are stigmatizing to patients and their families. We should all be working to reduce stigma, not add to it through medical care.
Now that we finally have a regular staff of five at ISNA, we find ourselves in the happy position of regularly having interesting discussions about our work, our mission, and our cause. One such discussion arose recently around the question of how frequent intersex is.
We had put our Programming Assistant Colleen Kiernan on the task of updating the frequency chart on our FAQ. Colleen soon hit a evidentiary wall, and posted her frustration on our staff intranet, as shown below. Our Director of Public Relations Jane Goto then replied with many important insights. So we thought we would share this dialogue.