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Sex unknown


"Sophie" is intersex. She looks like, and has always identified, as a woman, but her chromosomal make-up is XY, which genetically makes her a man. In this article she talks to FORUM about growing up, her experiences with the medical establishment, and how she lives with intersex today. According to Sophie it's high time to increase awareness of intersex in Denmark and she plans to start a support group.

FORUM/December 2001 "Sophie" is in her thirties and lives north of Copenhagen in Denmark. At the age of ten she was told that she could not have babies. "It's genetic", was the message from the doctor. This news came in relation to a gynaecological examination that Sophie experienced as a violation. Some years later, a similar examination was performed on her under full anaesthetics - otherwise she would not agree to it. Apart from these examinations, she also had an operation, but Sophie was never told exactly what the problem was. Why she had to go through all these examinations.

The "problem" was not given a name until she was nineteen years old. "Sophie" had Morris Syndrome or AIS - Androgen Insensitivity Syndrome, which means that she is born with an intersex condition. In other words, genetically speaking Sophie is a man, as she is born with an X and a Y chromosome. Usually, women have two X chromosomes, but in appearance Sophie is no different from other women, and she identifies as a woman.

Intersex is an umbrella label for a number of conditions and syndromes where the genetic make-up of the body - that is, chromosomes and genes - and the physical appearance of the person do not correspond to accepted biological norms of what counts as male or female sex. Sophie's condition, AIS, is one such condition.

AIS occurs when an XY foetus is incapable of absorbing testosterone and transform it to dihydratestosterone, the hormone that 'masculinises' the foetus. This results in the foetus developing feminine outer genitalia - that is, labia, clitoris, and a vagina. When the child is born, it looks like a "normal" baby girl. The condition is often not discovered at this stage, and the child reared as a girl.

Generally speaking, there are two forms of AIS: Complete and Partial. In Complete AIS, the genitals develop in a feminine pattern, and when born, the child is reared as a girl. In Partial AIS, on the other hand, the development of the genitals is neither completely male or female - the clitoris may be enlarged, or the penis may be small. In these cases, operations are often performed to "normalise" the appearance of the genitals; that is, making them more male or female. In both Complete and Partial AIS, the women are born without a uterus and ovaries, and instead have non-developed testicles, or so-called gonads, which do not descend.

Sophie's story is the story of the close link between biology and culture, and to what extent biology can tell us about what sex is or can be. Henriette Stick is writing her Master's dissertation in Psychology on intersex, and has been involved in an evaluation project on intersex patients at Rigshospitalet in Copenhagen. The project is designed to map out the psychic and physical well being, and needs of former and present intersex patients. She says:
- Intersex conditions show that we have to be very careful not to be too rigid when it comes to categories of sex. And that is precisely why intersex is such an interesting field in gender research.

- The question about where gender identity originates often results in a debate about cause and effect, where biology takes precedence over behaviour. The question remains, however, whether I think and act like a woman because of my biology, or because of the way others relate to me, Henriette Stick points out.

Sophie, who has complete AIS, with fully feminine genitals, tells that despite her intersex condition, she has never been doubt about her female sex.
- I was born looking like a girl, and have always wanted to do 'girlie things'. And I have been raised as a girl all my life, regardless of my biology.

When Sophie was around 4 years old, she developed a hernia, and when doctors examined her, they noticed that something was not quite right. Her vagina was very short and ended in a cul de sac, and they discovered that she had AIS. Shortly after this discovery, and due to the hernia, she had her hormone-producing gonads removed. Gonads are sex glands, which normally become testicles in male foetuses and ovaries in female foetuses, but in Sophie's case they did neither.

- The next time I came in contact with the medical establishment was when I was 10, when a specialist in the field asked to see me at Rigshospitalet. Unfortunately, he chose to perform a full gynaecological examination on me, without having bothered to warn me about it. I was severely traumatised by this experience, and developed a deep fear of even routine visits to the doctor's. As a result of this experience, a later gynaecological examination had to be performed under full anaesthesia. At the age of thirteen I began hormone treatment, as I have no natural hormone production after my gonads were removed ten years earlier.

But not until much later, did Sophie find out the truth about her syndrome.
- Discovering, at the age of three that I had AIS, did not change the way my parents related to me. All they understood from the doctors was that somewhere along the line, something had gone wrong in the sex determination process, which meant that my parents had a daughter who just didn't have a uterus and ovaries, and hence couldn't have children. This was also the message I was given when I was ten. That my infertility really had to do with me having an intersex condition, was only revealed to me 5 or 6 years later, and only when I started asking questions, says Sophie. She was nineteen when, finally, she was able to get a definition of her condition, after having been referred to a section in the book Clinical Sexology (1987) by Preben Hertoft.

- Reading about myself and understanding what AIS was really about, was both a relief and rather scary. I still have a lot of photocopies of that section of the book, so when people ask me about my condition or don't quite understand what it's about, I give them one to read, says Sophie, who recently has discovered more factual details regarding AIS after participating in the evaluation project on intersex patients at Rigshospitalet.

The difficulty of limiting and exhausting expressions of gender identity through two categories, men and women, can be exemplified by turning our attention to certain parts of India. In this part of the world there exists a third gender category, Hijra, which consists of intersexed as well transsexuals, and eunuchs. In most of the world, however, sex is still dimorphic, and furthermore, somewhat removed form the realm of culture. Nonetheless, Henriette Stick sees the fact that the sex chromosomes in themselves do not dictate what count as a man or a woman, as an indication that sex is more fluid and diverse than our bipolar thinking usually allows for.

- Intersex can tell us something about to which extent biology and culture interacts. Is it, for instance, paramount to have a penis in order to be a man? And is a man defined by which sex he sleeps with? Is it possible to have a large clitoris and still be a woman - and so on. Even though it is possible to talk about "pure" biology", in terms of XX/XY chromosomes, sex and gender is closely related to how the individual experiences him- or herself, says Henriette Stick, who focuses on the psychological and social consequences of living with an intersex condition like AIS in her dissertation.

Although Sophie has always felt like a girl/woman, having AIS has had profound effects on her self-image. Going through puberty was especially difficult, as certain feminine features remained absent despite beginning hormone treatment at 13.

- It was very uncomfortable being different from my friends at that age. They were developing into "real" women, while I still had no pubic hair, no period and no sexual experience. I remember being very sad and frustrated that my body wasn't developing like the others' were. My sexual debut was also rather late, partly due to a vaginal reconstruction that came way too late, which for many years left me thinking that I was never going to have a normal sexual life.

- As a teenager I didn't really understand what the syndrome was about, and that meant that I, maybe to a lager extent than other youngsters, wondered about whether I was attracted to boys or girls. Because I did know that my sex at some point had been uncertain. Today, however, I would say that fundamentally I have always known that I'm woman and that I'm attracted to men. Knowing that my biological make-up is male hasn't changed that at all.

On a day-to-day basis, is it difficult to be intersexed?

- In the last 5 years I've had to relationships with men, and in both of them it's been problematic that I can't have children. I wanted to adopt, but neither of my partners have seen that as an option. At the moment I'm single, and have started the adoption process on my own, because I cannot contemplate going through life without ever being a mother. Apart from the issue of children, being intersex doesn't really have an effect on my life, neither in relation to friends, family, or my carrier.

Some gender researchers have employed intersex as a way of challenging the gender dichotomy. How do you feel about that?

- It's not a problem for me. In fact, I think it's great if it results in an increased awareness that intersex exists. I felt relieved when I was invited to participate in the evaluation project at Rigshospitalet, because that signalled a willingness to be more open about the treatment of intersexed persons, both medically and socially. Also, it's been very important for me to be able to finally give some feedback where it belongs, regarding my treatment.

In the article How Sexually Dimorphic Are we?, in the December 2000 issue of American Journal of Human Biology, a group of scientists led by the American embryologist Anne Fausto-Sterling estimates that 1.7 per cent of live births in USA are born with some form of intersex. This estimate includes all births where the baby's sex is not immediately identifiable as either male or female, with regard to chromosomes, gonads, genitals, and hormone levels. On a similar note, an American intersex network ISNA, Intersex Society of North America, also assumes that as many as 60.000 children in the States are born with intersex conditions each year.

Cheryl Chase, who was born with both male and female genitals, founded ISNA in 1993. Throughout her childhood, Cheryl had a number of so-called "corrective" surgeries to "normalise" her genitals, which meant that among other things her clitoris was removed as it was deemed too big for comfort.

ISNA is probably the first support- and activist network for intersexed, but more and more such networks are propping up around the globe, for example in Britain, Australia and South Africa. The American network functions as a support group where people with intersex conditions can make contact with each other and share their experiences. But it is also an active political organisation, which lobbies for change in the medical treatment of intersex, as current practices, according to the organisation, do not respect fundamental principles of bodily integrity.

The treatment of intersex is often a mix of both medication and operations to correct the ambiguity between genes, hormones and physical appearance.

In Denmark there are no written protocols for treatment, but one can get an insight into the world of medicine by logging on to 'American Academy of Paediatrics' web page. Here the treatment protocols are accessible and they make for very interesting, if somewhat unnerving, reading.

>From the protocols it appears that corrective surgery is not merely a question of functionality, but about existing norms regarding femininity and masculinity. Take for instance the so-called "ruler rule". According to this rule the size of the newborn girl's clitoris should not exceed 0.9 cm, and in cases of an "enlarged" clitoris a clitoral reduction - which is exactly what it says - is usually performed. If the penis of the newborn boy is smaller than 2.5 cm, the argument is that he will find it difficult in later life to experience himself as a man, and hence it is suggested that he will be better off if the penis is "shaved" down in size to look like a "normal" clitoris, and he be raised as a girl. The parental job of socialisation will need medical assistance in the form of life-long supplements of oestrogen to inhibit the former boy from developing masculine traits. Needless to say, interventions such as these have dire consequences for the men and women involved: The loss of most or all sexual feeling for the rest of their lives.

The operations are spoken of as necessary by the medical professions, but ISNA activists believe otherwise. They view them as cosmetic and unnecessary, arguing that performing these operations are in violation of the Human Rights Convention's article which states that every individual has a right to his or her own body. A right, activists argue, that has been taken away from them in infancy.

According to Henriette Stick the treatment of intersex in Denmark is, if not entirely outdated, then at least somewhat out of sync.
- Contrary to the American protocols, the Danish are not in writing, and new forms of treatment are primarily developed and documented through a single evaluation project currently conducted at Rigshospitalet.

Socio-medical research, especially in the US, has suggested that intersexed individuals are often lied to, and that neither they nor their relatives are given much or any real information by the doctors about what intersex is. In contrast, Sophie does not feel that she and her parents have been exposed to severe levels of secrecy. Knowledge about her condition has been given in small doses through the years, although formulations have been somewhat weak, especially in the beginning.

- For instance, the doctor told me that I would have to take some pills, because some hormones that were important for my development, were produced in organs that I did not have, Sophie says.
Even at this stage, when Sophie was13, no one mentioned her chromosomal make-up or AIS.

- I believe that the information that was given to my parents over the years was ok, but I had to ask all the questions myself in order to get any answers. No one volunteered the information, even if answers were given when asked directly, explains Sophie, who also believes other issues could have been handled better by the doctors.

- The doctors were reluctant to propose a vaginal plastic operation, and told me horrifying stories about it. That, combined with an array of more or less humiliating suggestions as to how to expand my vagina - for instance, finding myself a nice boyfriend with whom and through intercourse my vagina might expand a bit - left me feeling angry and traumatised. Not to mention the horrific gynaecological examination!

There are no proper intersex support groups like ISNA in Denmark, but Sophie is thinking about changing that. She has no contact with other intersexed, but believe that it would be beneficial for most.
- A girl came to see at the hospital after my vaginal operation in 1990, but I wasn't ready to connect with anyone at that time. I was in intensive care, and simply didn't have the energy. All I remember is that she was a beautiful girl and that she spoke about her own operation in positive terms.

- I really feel that there is a need for a proper debate about issues of intersex in Denmark. I have come very far, and AIS is an integral part of being me. It's not worrying or hard for me to talk about it anymore. That's why I would like to help those who still have a hard time dealing with their intersex condition, says Sophie, who sees a potential in the Internet, because of the possibility of anonymity.

Anonymity is important for Sophie, because even if she is comfortable with her condition and regards it as a natural part of her life, the word "intersex" is largely unknown in Denmark, and she fears what people will think if she told them about it. But she hopes that future support groups will be able to demystify conditions like AIS.

Trine Kisling has an MA in Sociology from Goldsmith's College, London University. She has written her MA dissertation on the topic of intersex: "Bodies in No-Man's Land: Intersex and the Right to be Human" (2001). The dissertation can be borrowed from Kvinfo's library.

"Sophie" is a pseudonym. Her identity is known by the editors. If you are interested in getting in touch with Sophie, please contact Forum's editors.

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