Joan Whelan address to Robert Wood Johnson Medical
This is the presentation made by Joan Whelan in January, 2002 at the Intersex Panel for Sex Week at the Robert Wood Johnson Medical School. Sex Week, a required part of the curriculum for second year medical students, is a yearly series of lectures, workshops and discussion groups on a wide range of topics concerning human sexuality. The Intersex Panel was arranged by psychologist Nina Williams and consisted of Betsy Driver, Debbie Hartman, Dandara Hill, Kelly Leight, William Reiner M.D., Nina Williams Ph.D., and Joan Whelan (patient advocates, parents, surgeons, psychiatrists, and psychologists).
Until a couple of years ago I was not even familiar with the word intersexed even though I was born with Congenital Adrenal Hyperplasia, which has been called the most common type of intersex condition. When I first discovered the Intersex Society of North America I realized that I was not alone. There were many others who had shared similar experiences growing up with a condition that was never talked about.
In the past year I have filled in the gaps in my own history that related to my intersex condition. I received my early medical records from the New York City hospital where I was treated from the time I was 12 days old into my mid forties. The very first sentence in my records was:
First N.Y.H. admission of a 12 day old pseudohermaphrodite.
About a year ago I finally was able bring up the subject of my birth with my father. The first thing I asked him was whether they thought I was a boy when I was born. He said that they did. I thought about this for a minute and then asked him what my name was when I was born. He frowned at this as if he didn t understand why I would ask such a question and said “Joan of course.” Feeling the need to explain I said “Well you said they thought I was a boy.” He replied “We were pretty sure you were a girl.”
The main argument for doing surgery at a young age has been that anyone who had to grow up with such defective genitals would be psychologically damaged and might even become suicidal. The issue of psychological damage to the child is very important. However I would like to rephrase that question as Would an intersex child who is allowed to make the decision about surgery when he or she is old enough to understand the risks suffer more psychological harm than one who has had the surgery performed in infancy?
One of my earliest memories before I had the surgery that removed my clitoris was being given a bath with about a half dozen of my cousins who probably ranged in age from 2 to 5. I remember being so proud that I was the only girl who had something like the boys had. I had no feeling of shame. That came much later as I grew up and was subjected to constant examinations of my repaired genitals by groups of doctors and, yes, medical students. No one ever explained to me what was wrong with me that I had to be subjected to such treatment.
In the US it is rare to find an intersexed person who has escaped childhood surgery. I personally know such a person and she is thankful that she grew up too poor to receive the standard treatment. I understand from my readings that more individuals in the UK escaped surgery. Researchers from Leeds, in the UK, compared women with clitoral enlargement who had been subjected to surgery to those who had not. They found worse sexual function in the women who had surgery and that although both groups suffered psychological problems those who hadn t had childhood surgery actually faired better psychologically than those who did.1
The right to determine what is done to one’s body is extremely important. I am not alone in having had suicidal thoughts that stemmed from the feelings of helplessness that my treatment as an intersexed person brought on. Such thoughts of suicide seem to be unusually common among those of us who have had the surgery that was supposed to make us feel normal. The argument for early childhood surgery needs to be carefully reexamined.
One of the scandals of the treatment of intersexed infants and children is the lack of surgical follow up into adulthood. Until recently, follow up of surgery on girls consisted of examining the physical appearance of the genitals and the assessment often proclaimed normal appearance and adequate function. In my medical records the surgeon who performed the clitorectomy on me finished his summary of the procedure by saying that after the surgery the patient had “A relatively normal genitalia.” He did not bother to qualify his statement with normal looking he said normal. Of course my clitoris was less normal than before because it no longer existed. Back then function was irrelevant, appearance was everything.
Today the response that is often given to the question of follow up is this: Surgery is better today. In other words finding out what happens to the adults who had genital surgeries performed on them in infancy and childhood is irrelevant. Unfortunately this means that any surgery being performed today is effectively experimental. Parents have always been assured that their child will be receiving the benefit of the latest surgical techniques. Although I was never able to discuss how I felt about my treatment with my mother and she died believing that she had made the right decision; she did once tell me that my surgery was delayed until I was five in the hope that the technique would have improved.
I recently read a statement from the British Association of Paediatric Surgeons2 that stated that clitorectomy is no longer performed. It also assumed that clitoral recession, which was considered an advanced technique 10 or fifteen years ago, is no longer performed. This is because of reports that women who had clitoral recessions experience pain during sexual arousal. Not a surprising outcome considering that the clitoris becomes engorged during sexual arousal and this could be a painful experience for someone who has has had most of her clitoris buried alive. But just this fall a little girl whose parents I heard from was subjected to surgery at the same major New York Hospital where my clitorectomy was performed. The surgery that was performed on that little girl sounds a great deal like a clitoral recession. The doctor told the little girl’s mother that no nerves would be cut. The clitoris would simply be pulled back into her body. The fact that this type of surgery is still being performed at a major metropolitan hospital says a lot about the widespread lack of truthful information being given to the parents of intersexed infants and surgeons’ apparent lack of interest in learning about past surgical outcomes.
The technique that is often used today is clitoral reconstruction. Once again this is presented to parents as avoiding nerve damage. This is debatable since a paper published in 1999 by Larry Baskin, a urology surgeon at the University of California at San Francisco, has shown that the model of clitoral innervation underlying so-called “modern” clitoral reduction surgeries is simply wrong.3 I only hope that the surgeons who continue to perform clitoral reconstructions have bothered to read Baskin’s paper.
As long as these surgeries remain irreversible, the decision on whether to take the risk should be made by the intersexed individual when he or she is old enough to make an informed decision. Of course it will always be the responsibility of surgeons to do follow-ups and honestly report the potential risks to individuals who are contemplating surgery of any kind.
The belief that early surgery fixes the problems of intersexed people is wrong. It only makes the problem disappear in the eyes of the parents and the doctors and shifts the entire burden onto the child. The child knows something is not right but no one is willing to say anything. As one women posted on a CAH (congenital adrenal hyperplasia) message board, “It’s as if there was an elephant in the living room but no one would talk about it.” Everyone concerned with the care and treatment of an intersexed child needs education and counseling to help them to provide the psychological support that the child will need regardless of whether or not surgery is performed.
I hope I have made you understand why it is important that the current treatment protocol for the intersexed that is centered on surgery needs to be changed to a patient centered approach that stresses education, emotional support and counseling for everyone involved.
1 Presentation at the North American Pediatric and Adolescent Gynecology conference in Toronto. Reported in the London Times Tuesday June 26 2001.
3 Baskin, LS, A Erol, YW Li, WH Liu, E Kurzrock, and GR Cunha. 1999. Anatomical studies of the human clitoris. Journal of Urology 162 (3 Part 2) 1015-20.