Monday, 26 October 2009

Why do they have to cut so deep, Martha?

From On The Issues:
On a November night in 1958, I was playing in the bathtub in the cheery, country home of my childhood. I was six years old. My mother came in and sat on the edge of the tub, her kind face looking worried. I glanced up at her, wondering, "Time to get out so soon?" She told me that I had to go to the hospital the next day for an operation. I knew this was about something between my legs. My chest felt tight and there was a rushing sound in my ears. I begged not to go. Please. But my mother told me only that I must. Not a word was said about what was going to happen or why. The next day, it took the surgeon 30 minutes to make a U-shaped incision around my half-inch clitoris, remove it, and put it in a specimen dish to send to the lab. He then closed the wound and stitched the skin up over the stump.

Take no comfort in the fact that this took place 40 years ago. Today, most parents and doctors in this country are still unable to see that a child has a right to her or his own sexual body, even if that body is deemed "abnormal" by their standards. If a parent is uncomfortable, a doctor can be found who will be willing to make irreversible changes in the child's body, in order to ease that discomfort. My gynecologist told me about a case in which he had been involved the year before: A woman brought her five-year-old daughter to his office in Minneapolis; the mother felt that the child's clitoris was too big. He examined the girl and assured the mother that her daughter would grow into her clitoris, which was no longer than the end of his little finger. The mother left. A few weeks later, he was called into an operating room to help another doctor who had run into trouble during a surgical procedure. On the table, he found the same little girl he had seen earlier. She was hemorrhaging from a clitorectomy attempted by the second doctor, from instructions he had read in a medical text. My physician stopped the bleeding, and managed to keep the girl's clitoris mostly intact.
Doctors then told Angela's parents that if she didn't have surgery she might kill herself when she found out that she was different from other girls. It had happened to another patient, the physicians said, and it could happen to Angela. Although such speculation is not a lie, it is also not the whole truth. In my talks with scores of people with atypical genitals, it is those who have been surgically altered as children and left alone with their trauma who most often become suicidal. The isolation from others who have experienced what we are going through, the loneliness, is what kills us. Angela's parents were justifiably frightened and agreed to the surgery.

Doctors then told Angela's parents that if she didn't have surgery she might kill herself when she found out that she was different from other girls

The final lie was to Angela herself, with her distraught parents' complicity. She was told, at her physicians' suggestion, that her nonexistent ovaries could become cancerous and that she would have to go into the hospital and have them removed.

In 1985, at a leading children's hospital in Chicago, doctors removed the testes from Angela's abdomen. The clitoris that had brought her so much joy was not merely shortened, it was all but destroyed. She woke up and discovered the extent of the deceit: "I put my hand down there and felt something like the crusty top of some horrible casserole, like dried caked blood where my clitoris was. I wondered why no one told me and I just figured it was the kind of thing decent people don't talk about."
In 1965, Annie Green, then three years old, took a car trip with her father from the small town in Idaho where she lived to Spokane, Wash. She sat in the back seat with her stuffed animal, unaware that she was on her way to the hospital. The next day doctors removed her inch-long clitoris. She was never given any explanation of her surgery. As she got older, her attempts to find pleasure in masturbation failed, and she began to suspect that she was very different from other girls. Then, during a visit to her sister's house as a teenager, she found the book Our Bodies, Ourselves: "I studied the female anatomy and read about sex from that book. That was when I learned I didn't have a clitoris. I remember looking at the diagram, feeling myself, and reading what a clitoris was over and over. My God, I couldn't figure out why I didn't have one. I couldn't fathom anyone removing it if it was that important. I was stunned, and I held it all in. I was only 14. I became depressed. I was disgusted with my body, and I thought there was no hope that I would ever be loved by anyone. I became a little teenage alcoholic. I drank heavily every weekend. I really blew it because I had been a really good athlete and an honor student."
John Gearhart, a pediatric urologist at Johns Hopkins, has said, "To compare genital mutilation of young girls in Africa to reconstructive surgery of a young baby is a giant, giant leap of misrepresentation." But neither Dr. Gearhart, nor anyone else, has ever bothered to ask those of us subjected to clitoral surgery as children if being taken to the hospital without explanation, having your healthy genitals cut and scarred, then left alone with the results feels like mutilation or "reconstructive surgery." Gearhart's mistake is to judge surgery only by the surgeon's intent, and not by the effect on the child. I spoke with a woman recently who is young enough to be my daughter. With great effort, she told me of her clitoral surgery as a child. She implored me, "Why do they have to cut so deep, Martha? Why do they do that?"
And that is why the paper Pink or Blue? A Rights-Based Framework for Medical Intervention with Intersex Infants (PDF) by the Tasmanian Children's Commisioner for the 5th World Congress on Family Law and Children’s Rights is so important.
AISSG Australia has published72 a Preferred Treatment Paradigm For Children With Intersex Conditions:.
The AIS Support Group Australia supports calls for a moratorium on non-urgent medical intervention in children with intersex conditions. This includes gonadectomies on children with AIS and clitoral recession, but does not mean all surgeries should be stopped completely. The preferred treatment paradigm of the AIS Support Group Australia is simple:
1. Obtain an accurate diagnosis from an expert in intersex conditions – preferably an experienced Paediatric Endocrinologist.
2. Raise the child as a boy or a girl - depending on medical advice and with the complete support of the parents.
3. Give parents complete information about their child’s condition. A booklet describing the condition is best so they can refer to it if they have any questions between doctor visits.
4. Offer the parents and any other family members peer support and professional counselling.
5. If surgery is medically required, discuss all treatment options with the parents including the consequences of not having the surgery. Ensure parents are given the opportunity to ask questions and seek support and counselling. A period of several weeks to consider alternatives is also advised if medically possible.
6. Ideally a child should be educated about their condition in stages as they become old enough to understand certain concepts.
7. When a child with an intersex condition is around 12 years old (or just prior to puberty), they should be given professional counselling and told about options to treat their condition. Counselling should also include an opportunity for the child to openly discuss their gender. This will give those raised in the incorrect gender an opportunity to voice this to the counsellor.
8. From this point on, the child’s consent should be given for any further medical intervention, including hormone therapy.
9. If the diagnosis of an intersex condition is made later in life, doctors should still provide their patient with complete disclosure and offer the contact details of the AIS Support Group Australia.

To the AISSG list I would merely add
10. If irreversible surgery or irreversible endocrine therapy is proposed to commence before the child’s 18th birthday, that an application be made for the authority or approval of a suitably informed and expeditious Court or Tribunal of competent jurisdiction including as parties the parents, the child and an independent representative for the child’s separate interests.

The Commissioner for Children is an independent, statutory office responsible to the Parliament of Tasmania. The Commissioner’s functions include promoting the rights and well-being of children and young people, examining and advising the Government on policies, practices and services provided for children and laws affecting their health, welfare, care, protection and development.

Please read the whole thing.


Anonymous said...

Since I have found this out I have been telling people about it. It is unjust and cruel to these children. The inability to acieve orgasm due to some misguided doctors moral code would drive me crazy.

From the desk of
Cynthia Lee

Adrian Ravensoul said...

I burst into tears while reading this. I'm fortunate to have lived in a household where my parents never considered having anything altered to fit some ideal anatomical model of what a person's genitalia should be and it breaks my heart to know that so many are misguided and fall into the pressure to have these beautiful children mutilated.

I feel an even greater sense of despair over the doctors who perpetuate this crime, many who are ignorant of the damage they are doing. I am passing this article on to everyone I know.

Zoe, you are amazing!