Intersex and Medically Unnecessary, Irreversible Treatments
Discriminatory Views Create Discriminatory Medical Treatment
Author: Hida Viloria, Chairperson, Organisation Intersex International (OII)
Note: A small percentage of intersex variations sometimes require medical attention for immediate health reasons. This treatment is necessary, and is not what I am referring to below.
People who promote nonconsensual genital surgeries and/or hormone therapy for intersex infants and children — often called “corrective” or “normalizing” treatment –believe intersex children will grow up to be adults who fall short of social norms. However, these beliefs are purely speculation because they have not taken the time to speak with intersex adults like myself who did not undergo surgery, or to do follow-up studies on the children whose bodies they irrevocably changed. Doctors simply assumed that our bodies are not desirable, and that nonconsensual treatments would help us and/or our families. In my personal experience, and from the experiences that countless intersex adults have shared, this couldn’t be further from the truth.
Doctors decided, back in the late 1950’s, that they knew how to make intersex bodies better. Although dozens of intersex adults who were subjected to these “corrective” procedures have been speaking out for almost two decades about how harmful these procedures were for them, the medical establishment has still not officially recommended that they be postponed until the child is old enough to decide for themselves if they’d like to change the genitals they were born with. Although other humans are given this right (with the exception of circumcision), most intersex infants today, sadly, are not.
One of the reasons these surgeries persist is similar to the reason circumcision does: people have popular notions of what genitals should “look” like, and want their children to have this to fit in. However, the bigger reason is that some people still assume that, because our biological sex is not standardly male or female, our social gender won’t be either. It is this fear of an androgynous, non-binary social gender role that drives recommendations for surgery, for some believe it will lead to children and adults who “stick out,” or suffer psychological difficulties.
I have found, in talking to dozens of intersex adults, that these fears are unfounded and incorrect, but, as a recent New York Times article illustrates, they persist.
“There haven’t been any studies that would support doing nothing,” says Larry Baskin, Grumbach’s protégé and current chief of pediatric urology at the University of California, San Francisco. “That would be an experiment: don’t do anything and see what happens when the kid’s a teenager. That could be good, and that could also be worse than trying some intervention.” In Baskin’s view, being intersex is a congenital anomaly that deserves to be corrected like any other. “If you have a child born with a cleft lip or cleft palate or an extra digit or a webbed neck, I don’t know any family that wouldn’t want that repaired,” he told me. “Who would say, ‘You know what, let’s wait until Johnny is 20 years old and let him decide?'”
Contrary to Dr. Baskin’s statement, there have been studies that would support doing nothing. In fact, one of only several studies in existence about intersex adults, performed in 1952 by Dr. John Money for his dissertation at Harvard, showed that intersex adults who had not been medically tampered with showed less incidence of psycho-pathology than non-intersex adults. In other words, intersexuals were found to be psychologically healthier and better adjusted than non-intersexuals.
The other study, performed recently in England, found that even when adult intersexuals had voluntarily employed surgery to “normalize” their bodies, the results were ineffective and harmful. The surgeries were unable to provide “normal” bodies and created physical problems, such as tremendous physical pain and loss of sexual sensation, which made their lives more difficult than before.
Dr. Baskin claims it would be an “experiment” to “do nothing” to an intersex infant or child. However, changing a healthy body via modern medical science in order to try to make it “better” than what nature created is the experiment. His view that ambiguous genitals are akin to a cleft lip that any parent would want to correct before adulthood is astoundingly simplistic and inaccurate. The function and psychosocial significance and impact of genitals is much more complex and significant than that of a cleft or uncleft lip. He misses the points that intersex adults and their advocates have made about how the surgeries left them sexually damaged and/or impaired and often very psychologically confused about their true identity.
However good the intentions may be, surgeries done on infants to “correct” their sex or their sexual organs have been shown repeatedly to be unsuccessful. Children do not need these organs to look any particular way until they become sexually active later, and as we have often seen, it is impossible to determine how an infant or child will want to express themselves sexually as an adult. Because we can not tell how masculine, feminine or androgynous a baby will later want to be, “picking” how to “make” their body appear is basically a crap-shoot. Why would you want to run that kind of irrevocable risk on your child’s future fulfillment? What if you and the doctors made the wrong choice, one your child was ultimately so miserable with as to be suicidal, as we see in so many cases of “corrective” medical treatment.
In thinking about children and their development and experiences, many adults forget, or perhaps do not realize, that prejudices and stigma are learned. Children do not believe, for example, that black and brown people are dangerous, poor, unintelligent, or inferior until they learn these beliefs from an adult. Even in those instances, some children reject these learned beliefs in favor of their own by adulthood or throughout it.
Because no one ever said a word about my genitals being “wrong” in some way, and I wasn’t operated on or given hormones to “correct” anything, I was able to form my own beliefs about my body and my identity, and those ideas were positive. As I mentioned in a 2002 on ABS’s 20/20, the first time I saw another girl’s genitals in a locker room at age eleven, my first thought was “she’s missing something.” There was no reason for me to assume anything was wrong with my body and so I did not. Such is the case for others who escaped “medical normalization.”
In 1998 I interviewed three intersex adults for my undergraduate thesis at U.C. Berkeley entitled, “Experience Versus Theory: The Testimonies of Adult Intersexuals on the Medical Management of Intersexuality.” These adults, like myself, had not undergone surgical or hormonal treatment of their intersex conditions. The interviews revealed that, as children, they did not experience the trauma and confusion that doctors and others often presume they will, despite having very ambiguous genitalia and very unusual social circumstances to navigate through. Further, as adults, they were all in long-term, committed, seemingly happy, healthy relationships. They appeared mentally healthy, were gainfully employed, and had friends and a social life. Basically, they seemed just as happy and successful as any other group of people I’ve known.
One of the doctors who supports “corrective” surgery said to me once during a debate on the issue, “People can’t even accept people of different colors sometimes, how can we expect them to accept a third sex?” My answer to him was, “By that reasoning, if you could make everybody white would you do that too?”
Even if people do not, out of ignorance and/or bigotry, accept a group, eliminating that group of people, or the characteristics that make them different, is a poor solution to ending discrimination. If doctors or others in power had been able to do that with other minority groups in the past, we would have a much different society today. Our society would be similar to Adolf Hitler’s vision of a homogenous race deplete of people of color, gays, and anyone else considered different by the group in power. Fortunately, Hitler was stopped before he could fully realize his dream, and Jewish people and others he considered inferior did not suffer total extinction. However, thousands suffered beforehand, just as thousands of intersex people have suffered since “normalization” began.
Outdated and unfounded bogotries towards intersex people have caused them decades of suffering. It is sometimes shocking to me and to the people I inform about this that these attitudes still exist. Then I remember that many humans are threatened by minority groups, by those who are different from them. They react with fear, rather than curiosity, and fear, as we know, sometimes leads people to hurt those they find threatening.
It’s time to stop the intesex gendercide. To let go of old notions that came out of the 1950’s (weren’t African-Americans forced to use different drinking fountains back then, etcetera…?), to stop playing God on intersex children’s bodies, and to accept intersex people as equals. Every person and particularly, parent, alive has the power to do this right now, and, I believe, the heart to want to.
 Weil, Elizabeth. What If It’s (Sort Of) a Boy and (Sort Of) a Girl? The New York Times. 26 Sept. 2006. Web. <http://www.nytimes.com/2006/09/24/magazine/24intersexkids.html>.
 Minto, Catherine L., Lih-Mei Liao, Christopher R J Woodhouse, Phillip G. Ransley, and Sarah M. Creighton. The Effect of Clitoral Surgery on Sexual Outcome in Individuals Who Have Intersex Conditions with Ambiguous Genitalia: a Cross-sectional Study. The Lancet V.361, N. 9365, 12apr03.” Mindfully Green. 12 Apr. 2003. Web. <http://www.mindfully.org/Health/2003/Intersex-Clitoral-Surgery12apr03.htm>.