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Intersex Issues - An Interview with Betsy Driver

 article about An intersex case study
2004-06-13 13:46:54

Betsy Driver is an intersex adult, who has been kind enough to share her story and her thoughts with us. She is also the co-founder of an organization called "Bodies Like Ours" that provides information and support to other intersex persons and their families.

I would like to urge all of my readers to visit their site and learn more about this issue. It is, ultimately, societys acceptance of intersex people that is going to end the unnecessary surgeries that the vast majority of these children undergo in an attempt to make them "normal."  I would like to thank Betsy and "Bodies Like Ours" for the invaluable assistance in contributing to this interview and our goal of making "abnormal" just another form of "normal."

KB: Betsy, first I want to thank you for this opportunity to talk to you. You were born as an intersex child - can you tell us in general terms your sexual appearance, and what the doctors advised your parents to do?

BD: When I was born the doctor in the delivery room was unable to tell my parents if I was a boy or a girl. Instead of hearing, "Congratulations, you have a boy/girl", my parents heard, "Oh shit, we'll have to get back to you."

KB: I understand that many intersex children undergo many surgeries, in an attempt to achieve "normal" appearing genitals. How many surgeries did you undergo and what were the results?

BD: The most traumatic one was age three months when I had my clitoris surgically amputated from me because it was larger than what the doctors considered "acceptable". There wasn't anything wrong with it:   it wasn't diseased or  causing me any medical problems but they considered it a social emergency.

KB: At what point did you and Janet Green start "Bodies Like Ours" and what were your goals for this organization?

BD: Bodies Like Ours was founded in early 2002,  but the planning started in 2001. ISNA (Intersex Society of North America) was moving toward focusing their efforts on changing the medical protocol at the time and there wasn't a central place people could go to for peer support. There are some condition specific organizations such as the AIS groups but nothing that we could find that would help people begin their journey of self-discovery, particularly if they didn't have their diagnosis, which is often kept secret by parents and doctors.  The goal then and today was one of erasing shame and secrecy.

KB: Is surgery ever appropriate for an infant or child - someone who can't really make informed consent?

BD: Perhaps if you think it is also okay to do a lobotomy at the same time. There are surgeries done on children with an intersex condition that are necessary such as when there is a recurring urinary tract infection. There are also some situations where gonads must be removed before puberty if they are producing testosterone and the person identifies as female.  Even these surgeries should wait until the gender identity is firmly established and expressed by the child without pressure from the adults around him or her.

The vast majority of surgeries done on kids and infants with intersex conditions are purely cosmetic. Some examples are clitoral reductions where the tip of clitoris is removed:  they cut off and throw away the shaft part.  They then sew the tip back on or do clitoral recessions where they push the external part of clitoris back into the pubis area with the goal of hiding everything but the tip. There are also some situations where boys born with a penis that is very small or non-existent are sexually-reassigned through surgical and hormonal treatment. These types of surgery are wholly unnecessary.

KB: Why is it so important to not perform surgery? Isn't it equally important for a child to appear "normal" and fit in? Or do you think our society is far too worried about everyone looking the same?

BD: I hate to throw a clich in here, but what exactly is "normal"? It's a socially constructed ideal that is put forth by people who think they know best.

If unnecessary cosmetic surgery is performed, the surgeon is assuming what the person would want and there is no way for an infant or young child to express that. Most of these surgeries are done for the benefit of the parent because an infant doesn't give a damn what their genitals look like or whether she has a vagina or gonads. More assumptions are made on the gender with which the child will identify.  If you read some of the medical literature, there is a remarkable lack of understanding of the differences between gender and sex and that's part of the problem.

I'm often asked about the school age years for kids with an intersex condition, particularly in the realm of group showers. Sorry, but this doesn't fly. Number one, we should be changing society, not doing damaging cosmetic surgery on children to appease society. Number two, enact meaningful anti-bullying legislation in all schools. Why should the kid that is different have to suffer when it should be the perpetrator of violence that should be removed? And number three, why are group showers such a ritual of puberty anyway? I've never understood that.

KB: Many doctors seem to be very insistent about surgery needing to be performed as soon as possible. Even the current Merck Manual advises that surgery for the most successful gender be performed immediately, and for the child to be treated as the assigned gender. Do they even take into account the genetic sex of the child, or does this not even play a part in these decisions?

BD: There are a lot of things at play here. First and foremost is doctors make A LOT of money from these surgeries which insurance companies generally don't question. Part of that is because the child is looked upon as a victim that needs to be fixed from the "horrible fate" that befell them before they were even born. Generally, most births are visually assigned male or female based upon a visual inspection of their genitals, and a chromosome test is never done. When someone with intersexed genitals at birth is born, a chromosome test usually takes place but not always. It's amazing how many girls with congenital adrenal hyperplasia get sent home as boys despite the lack of visual or palpable testes. Thankfully, the incidence of that happening with newborn testing is decreasing; previously the child would get deathly ill (literally) before the intersex condition was discovered.

In other cases, chromosomes may not matter. The current medical protocol places genital appearance above chromosomal makeup such as when a boy is born absent a penis or with a micropenis. The feeling is he could never survive socially without a penis as a male so it is better to sexually reassign him to female, remove his gonads, and give him female hormones.

Most of these kids eventually reclaim their male identity.

It's important to remember that while these surgeries are sold as being beneficial to the child, it's really the parent who is being calmed and thus treated as the patient.

One claim made often by surgeons is that techniques are "improved" now but that ignores the fact that the surgeries are still unnecessary. Even with these "improved" techniques, there still are not any long term follow-up studies on the quality of life of those who have had surgery or on people with intersex conditions as a whole. Most study visual appearance of the results. While visual appearance is important, it doesn't mean squat if sensitivity is gone.

KB: I would think that the exploits of Dr. John Money would demonstrate that a child cannot have a gender assigned - they are what they are. Why are so many doctors so resistant to these obvious signs that what they are attempting to do just doesn't work?

BD: Some are changing. The focus is currently on medical students with the sad realization that doctors who have been mutilating genitals for their entire career will not change their minds.  That would mean admitting they have been doing harm.


 


Unfortunately, it is a slow process because we have to change more than the doctors---we need to educate society and make sure the parents of an intersexed child have the proper, compassionate support both professionally and at the peer level. Replacing the scalpels with someone to hold a hand through what is truly a traumatic event is a long process.

There is also an effort underway to change what is being taught in medical schools. ISNA is focused on the MERI (Medical Education Reform Initiative) to do just that. It's horrible that major medical schools like NYU have to organize student led events to learn about intersex because it is not being taught in their curriculum. Additionally, providing peer support is not on the agenda of most medical doctors.

KB: If you could say anything to the parents of an intersex child, what would it be?

BD: Breathe. There is no rush, despite what the doctor may be saying—your baby's genitals are not diseased. Learn as much as you can, reach out and ask to speak to other parents and to adults who  have undergone surgery as well as those who have not.

KB: I understand you were a speaker at the recent hearing on intersex issues held by the San Francisco Human Rights Commission. Can you tell us about your experiences there?

BD: The SF HRC hearing went very well. Several people with intersex conditions shared their experiences, and the commissioners were very engaged by what they were hearing. The most interesting part of the evening (other than the personal stories which were riveting) was the testimony of Dr. Laurence Baskin, chief of Urology at UCSF who claimed that they do "maybe one surgery a year" despite the information his colleague, Dr. Melvin Grumbach provided when he told commission investigators that they do about 40 each year.

KB: What can people do to learn more and to help?

BD: Visit the website of Bodies Like Ours to learn about the personal struggles people with an intersex condition often face; ISNA to learn about the medical aspects and Intersex Initiative to learn about some of the social issues and an overview of the way intersex is reflected in society. And please make a donation to help us change a very broken part of this world.

Bodies Like Ours - www.bodieslikeours.org

Intersex Society of North America (ISNA) -  www.isna.org  

There is also a plethora of links at the Bodies Like Ours site for international support sites and sites for youth with intersex conditions.





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