In school we were told that boys are conceived when the fetal cells contain an X chromosome and a Y chromosome, and girls conceived when the cells have two X chromosomes. “Any questions?” the teacher would ask. There were none, because it sounded simple. But it isn’t.
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Scores of genes, enzymes and hormones go into shaping our sex. Every fetus has the potential to develop along one of two primary tracks – male or female – and the genes, enzymes and hormones gradually direct it along one of the tracks. But sometimes a particular gene is inhibited or an enzyme becomes undisciplined, and a fetus that had begun to develop along a particular course suddenly changes track and continues to develop along the other one.
That is the origin of intersex − a situation in which the body displays both masculine and feminine features. It’s not so rare: One in every 4,000 people is intersex. And the reasons for this are numerous – nearly as many as there are stages in the biochemical paths that affect our sex.
A few weeks ago, Tel Aviv’s Ichilov Hospital hosted the first gathering of a nonprofit for people with the most common type of intersex: congenital adrenal hyperplasia (CAH).
“The question of boy or girl, man or woman, is one of the most basic questions in our society, and maybe in all human societies,” says Prof. Naomi Weintrob, director of the pediatric endocrinology and metabolic disease unit at Dana-Dwek Children’s Hospital, who organized the conference. “The answer, on the other hand, is not trivial, because it can be looked at on several levels. You can address the genetic level, which is determined by the sex chromosomes: A man is someone who has XY, and a woman has XX. You can talk about the sex of the internal reproductive organs, whether they are testes or ovaries. You can look at the external level of the sex organs − the penis or vagina − and see how much hair covers the body. Plus, there is also the gender identity, the psychological level: whether the person feels like a man or a woman.”
Generally, all the levels are compatible: The XY genetic makeup goes with testes, a male sex organ, body hair and a masculine consciousness; XX goes with ovaries, a female sex organ and a feminine identity.
However, in intersex cases there are inconsistencies. For example, CAH. This is the most common intersex situation and is caused a surplus of the male hormone, testosterone. Normally, this hormone is secreted from the testes that only normally develop among boys. Among people who are CAH, however, a large amount of testosterone is secreted by the adrenal gland, located above the kidneys. This gland is responsible, among other things, for the secretion of adrenalin.
For boys who are XY, this development does not affect them regarding their sexual development. XX girls, however, are suddenly flooded by the male hormone that encourages the evolvement of a male sexual organ in addition to the female reproductive organ. In puberty it encourages the growth of body hair and the development of body muscles.
A baby with CAH can have XX chromosomes, a uterus and ovaries (so far, a female), but because a large amount of testosterone is present in the blood, there is also a male sex organ and body hair. So it appears from the inside a woman, but on the outside, a man.
“Parents of babies like these go into severe distress,” Weintrob explains. “The genetic change that causes this phenomenon also affects saline levels in the body and other biochemical functions, and requires immediate treatment, but that’s not why parents enter a state of anxiety. Ambiguity of the sex is a difficult experience. Therefore, an intersex birth today is considered a medical and psychological emergency that calls for urgent solutions.
“The working assumption,” Weintrob adds, “is that for intersex individuals and their families – like for all human beings – a clear sexual and gender definition is a basic necessity. After all, the first question a new parent is asked is whether it’s a boy or girl. That is the first in a series of stereotypical choices, such as choosing a name, or buying clothes and toys that are perceived as gender-appropriate. It is important to diagnose the sex as accurately but promptly as possible, because the moment that parents inform their loved ones of the sex of the newborn, they are usually unwilling to change it – and then there might be a situation where the baby is raised as the wrong sex.”
What is “the wrong sex”? How is it possible to know what is the correct sex?
“That really is not a simple question. Every case is weighed in terms of the understanding that a person’s sexual identity derives from a combination of his or her genetics, his or her hormonal profile, and the environment in which he or she is raised. Generally speaking, with regard to all intersex situations, there is a highly complex system of considerations that determine which sex the baby should be raised as. In the past we would take into account mainly the surgical potential − the chances of having children in the future, and the possibility of having a satisfying sex life in the chosen sex.
“Nowadays, the decisive consideration is what the baby would like to be when he or she grows up; what gender identity it will have: masculine or feminine. To that end we rely on major long-term studies done throughout the world, which examined the connection between the various intersex situations and subjective gender identity. That is how we know, to a very high degree of likelihood, what a particular newborn will want to be in the future. We try to make it possible with the help of medical treatment.”
Intersex is the result of totally ordinary genetic mutations − often small ones − precisely like those that cause diabetes, gluten sensitivity and red hair. All are relatively rare phenomena. And yet while people are completely tolerant toward a person who has an allergy or sensitivity to milk, they feel discomfort when they hear about someone who has a uterus but also a male sex organ. Is this a primitive type of mistrust, whose origins are evolutionary, vis-a-vis anything that is out of the ordinary and different? Or perhaps a cultural thing, an intellectual rigidity shaped by habit and society?
In ancient Greece, homosexuality was a common phenomenon. Later on it was considered obscene, and today it is accepted again. The unknown is what deters people; the unusual is what arouses reservations. Most people are boys or girls, it is easy to categorize them and natural to do so. And as Claude Levi-Strauss said, the mind cannot grasp the world other than as a dichotomy. But the world is not a dichotomy: It is not only black or white, good or evil, man or woman.
In the 1970s, it was accepted that what primarily determines our gender identity – what makes us feel, think and behave as girls or boys – is the education we undergo and the environment we grow up in. The leading advocate for this theory was an American psychologist named John Money. To confirm his suppositions, he conducted a shocking experiment on a boy named Bruce.
At the age of 6 months Bruce and his twin brother suffered from medical problems, which required a medical circumcision procedure. Unfortunately for Bruce, his penis was seriously damaged and had to be removed. On Money’s advice, it was decided to remove the testicles as well and to raise Bruce as a girl.
Money monitored Brenda, as Bruce was renamed, and reported to the world that she wore dresses, played with dolls and behaved like a girl in every way, whereas her twin brother (who instantly became the perfect control case) wore pants, played with cars and acted like a boy. He ordered the parents not to tell the children anything about what happened, and began publishing articles about Brenda’s happy life.
Time Magazine hailed the successful experiment, which proved that gender is all a matter of education, and thereafter the prevailing view was that intersex children should be operated on as soon as possible to enable them to lead a normal life. But the reality was different. As a child, Brenda tried to rip her dresses and rebelled against her long hair. In adolescence, when she found out about the experiment, she decided to have surgery to rehabilitate the sexual reassignment. Brenda went back to living as a boy, named David, but evidently it was too late: He committed suicide at age 38.
“Today it is clear that the biological data has a decisive effect on gender identity,” Weintrob says. “Therefore, when we try to predict the future identity of intersexes, we study them thoroughly. Usually we recommend raising babies that are CAH with XX chromosomes as girls, in keeping with the chromosomes and internal reproductive organs (uterus and ovaries), despite having a male sexual organ. That gives them a chance to give birth in the future, because as a man, they will not be able to give birth because there is no reproductive system that manufactures sperm cells.
“In order to enable them to live as women, we operate on them and turn the male sex organ into a female one. Contrary to the past, the skills today are excellent and preserve the nerve sensitivity in the area to allow for sexual satisfaction. With the help of hormonal treatments, we restrain the production of the excess male hormone and thereby prevent the body from being covered in hair.”
And the psyche? Does it concur?
“Studies done around the world show that it does. A majority of girls who underwent the surgery and were raised as girls have a feminine gender identity.”
On the face of it, that is not surprising, since, genetically speaking, they are women. But studies that examined their gender behavior – or gender role – found it to be “masculine.” As children, they tend to be more aggressive and play with cars more than dolls. As adults, they tend to opt for “masculine” occupations (defined as professions in which less than 25 percent of those employed in them are women), such as truck drivers, soldiers and engineers). Many of these women are also attracted to women – if not in practice, then at least in sexual fantasies.
Is it possible that exposure to the male hormone during the fetal period also impacts the brain, and not only the sex organs?
Prof. Zvi Naor, from the biochemistry department at Tel Aviv University, claims so. As a scientist who studies the mechanisms of sex hormones in the brain, presenting plentiful evidence from the behavior of animals that can shed light on what happens in humans.
Naor: “Shortly after a male is born, its body is flooded by a wave of the male hormone, testosterone. When the hormone reaches the brain, it undergoes what we call ‘brain masculinization.’ The brain becomes masculine. Neural pathways organize and create unique centers that are involved, for example, with sexual preference, aggression, spatial ability and courtship strategies. Such change does not occur, of course, in the female.”
Naor highlights an experiment conducted on rats: “Mature rats have a simple and typical sexual behavior: The females curve their backs, while the males perform a unique climbing movement. Without these movements there can be no fertilization, and they occur on a particular day of the menstrual cycle and at a particular time, close to ovulation.
“You take rats that have just been born and get rid of the organs that secrete sex hormones: From the male you remove the testes and from the female, the ovaries. Now you give each the hormone of the opposite sex: to the males you give estrogen, and to the females testosterone. Two months later, a reversal of roles takes place. The male curves his back, and the female makes the climbing movement. In other words, the sex hormones shaped the brain and, therefore, the sexual behavior of the rats.”
Songbirds and bees
A similar process happens in songbirds, Naor adds. “In the brain of the males there is a song center that allows them to sing their wonderful courtship songs to females. This region is shaped by the male hormone before birth. The parallel region in the female brain makes her receptive for this song, and develops in the presence of female sex hormones. If you remove the testes and ovaries from the males and females, respectively, and give them the opposite sex’s hormones − the roles get reversed: The females begin singing and the males listen. Studies like these teach us that there is a window of opportunity with the brain, a critical time during which the brain centers responsible for male or female behavior take shape. It is a biological window and it is quite brief.”
But what about the environment? After all, it also plays a role in shaping the behavior, sexual identity and occupational choice of the growing child.
“The environment has an influence, but it operates on the biological foundation that was laid in the fetal stage.”
Nevertheless, studies show that most CAH with XX who were raised as females feel they are women, despite the testosterone that was in their bodies during the fetal stage.
“First of all we must not forget that a human being is a more complex creature than rats and songbirds, so its development of sexual identity continues to evolve during childhood and adolescence. However, in the prenatal stage the male hormone is undoubtedly critical and performs brain masculinization.
“There is a broad spectrum of women who have CAH, and a big range of male hormone levels in their bodies,” Naor adds. “There are those who were exposed, in utero, to very high levels of the hormone, and others who were exposed to lower levels. In the former cases, brain masculinization apparently took place, and these may be the less content women. In the other cases, the more moderate ones, partial masculinization may have occurred, and then these patients can be content as women. Perhaps in these cases the male hormone level was sufficient to ‘nudge’ these women in the direction of a masculine gender role, but not high enough to create a masculine gender identity.”
If the brain becomes male because of the male hormones it encountered during the fetal stage, maybe it is a mistake to raise these intersexes as women? Perhaps they should be brought up as men, despite their genetic makeup (XX) and the fact they have a uterus?
Prof. Yardena Tenenbaum-Rakover, head of the pediatric endocrine unit at Haemek Medical Center, Afula, encounters such CAH girls who were raised as men. Some of them were defined as boys in the delivery room because of what the midwife took to be a penis; only at a later age did it transpire that these were girls with CAH. Because the family did not want to change the sex, they brought the babies up as boys.
“They are actually content with their male identity,” she says. “Studies show they feel like men and also tend to raise families, whereas those who grew up as women have difficulty maintaining a romantic and domestic relationship.”
So the environment does have an impact? It seems that those who were raised as women are content as women, and those who were raised as men are content as such.
“The environment and biology can be interrelated. Biologically, there is a range of masculinity – both among ‘regular’ people and among CAH people – and there is a wide range of masculine hormone levels. In the more moderate cases of CAH that are XX – those whose level of masculine hormone is relatively low – it is preferable to bring them up as women. In cases where the masculine hormone level is very high, the bodily features are very masculine, and the brain is apparently masculine as well. Then one should consider bringing them up as men.”
Because of her clinic’s location, Tenenbaum-Rakover encounters many Arab families, who prefer to raise intersex babies as boys. “In Arab society there is almost always a preference for males. Therefore, many times the parents insist on bringing up the baby as a man − even if it is clear to them that the man will be infertile. As part of our attempt to determine which sex it would be preferable to raise the child, we also take that into account – because a person does not grow up alone. A person’s mental welfare and self-esteem depend, to a great extent, on the way he is treated by those around him, and therefore if that same intersex would receive support specifically as a male, it is very important. Parental preference and the cultural environment are definitely part of our considerations when we think about what is best for the child.”
The ‘third sex’
The need for a clear designation of sex and for determining how an intersex newborn should be raised may be a given for physicians, but not necessarily among all intersexes. Sulina (not her real name), 38, who is among the community’s more prominent activists, would rather forgo that determination. As far as she is concerned, the decision should be put off until the body has been allowed to develop in whichever direction it wishes. She talks about the need to acknowledge a “third sex.”
“Until the age of 27 I didn’t understand what was happening to me,” she says. “I grew up as a girl with kidney problems − that’s what the doctors told my parents, and they added that I would have to be treated with medication my whole life. Once every two months I would go with Mom to the hospital, where they would put me into a dark morgue and tell me to get undressed. I would stand in the cold room, which had the aluminum beds on which corpses usually lie. I really did feel dead. I was photographed from every angle to monitor my development.
“In 10th grade, when all my girlfriends talked about periods and their first bra, I didn’t understand what they were talking about. I didn’t have a period or any breasts, and I began to grow hair all over. I couldn’t bear the suffering and quit school. My family is very closed and I had nobody to talk to. When I was 27, I met a man and began thinking about starting a family. A doctor sent me for hormonal tests, and then I discovered my condition: classic, which is to say severe, CAH. In other words, an XX woman with three times the masculine hormone of a regular man. I asked to unseal my medical file, and there I saw that until I was 6 months old I was designated a boy. And then I underwent three operations and began receiving drugs to turn me into a girl.”
Do you feel like a man or woman now?
“I don’t know. I don’t have a feminine body, but I don’t feel like a man. On the other hand, I’m also not really a woman. Sometimes I try out identities: walk around in men’s clothes and adopt appropriate mannerisms, but I don’t recognize myself. On the other hand, when I wear or skirt or dress I don’t feel ‘at home,’ either. Something is lacking. It’s very hard to define and it’s very frustrating. I’ve dated men and tried to date women, but something was always amiss.
“Today I have an intersex partner, for a different reason than mine: He was raised as a woman and only at age 27, in the wake of terrible stomach pains, it turned out he has no uterus, but rather testes. He had surgery that was intended to make him a complete woman, and nevertheless he still has not found himself, because he looks very masculine.”
When you talk about him/her, you sometimes use the masculine pronoun and sometimes the feminine pronoun.
“When we’re alone I address him as a man, but outside, in front of people, I address her as a woman, and then people think we’re lesbians. That, too, adds to the confusion.”
Not a simple matter.
“Our life is far from simple, emotionally and also physically. The treatment I get causes me serious bone problems. Some of the hormonal treatment also causes weight gain. Socially it’s a nightmare. I ask myself why they ever operated on me in the first place. If they had left my body the way it was at birth, maybe I wouldn’t have suffered so badly. Maybe I could have lived with an enhanced penis and without female hormones. You never know. An operation is a one-way action. Someone once determined that I am one particular sex, a girl, but if in adolescence I felt something else, surgery was no longer possible.
“They say today that the operations have become more sophisticated and more successful, but what is a successful operation? I once heard one surgeon say that a successful operation for a woman is when she can be penetrated, and for a man it’s when he can penetrate. That is the yardstick. And what about the feeling, the sexuality and the side effects?
“I want them to leave me alone. Don’t operate on me and don’t flood me with hormones. Let my body develop the way God created it. Today the doctors decide for me. Their intentions may be good, but it’s their own good. Maybe they are right, and surgery and hormones are necessary − but let me decide, and then maybe I will be less confused. Take action only if something is life threatening. It is my body and I deserve to decide about it.”
What would you like to happen?
“I would like for us to be accepted as a third sex. Why must sexuality be defined? Why not accept the fact that there is an undefined sex? Let the body develop however it wants, without operations and without hormones, and also persuade the parents to wait as well. Be with the child and give him psychological help until he decides what he wants. And the main thing – explain.
“My parents were not given an explanation. I asked my mother, and she said that at the time she did not understand Hebrew well, and she is an uneducated woman. They simply told her an operation was needed, and that was it. My partner wasn’t told that before the total sex change he could have frozen his sperm. We want children badly and now it’s impossible. Why? There needs to be dialogue.”
The concept of accepting intersexes as a third sex has won some surprising support from members of the clergy, at least at a conference held on the subject last year at the University of Haifa, under the auspices of the Faculty of Law and the International Center for Health Law and Ethics.
The clerics who spoke − a Jew, Christian, Muslim and Druze − all said that assigning a certain gender to a person can make things easier for him or her, but is not obligatory and the decision ought not to be made hastily at birth. For her part, however, Prof. Weintrob does not concur with this approach.
The danger of rejection
“For several years now,” Weintrob says, “there have been conferences on the subject in Israel and abroad, which are attended by patients, lawyers, doctors and human rights activists. Generally, the wind that blows from there is one of combativeness against the patronizing attitude of doctors. It is regrettable. Defining a baby’s sex is critical. It is the social reality we live in today in the Western world, and if the newborn’s sex is not defined, the family may not accept him or her emotionally.
“We have already seen cases like that. From a mental standpoint, a child’s rejection by its parents might prove far more harmful than a restrictive or even erroneous definition. Perhaps in the past the medical establishment’s attitude was patronizing, but today the decision on how to bring up the baby is made with the consent of the parents. The decision is finalized after in-depth consideration by a team that includes psychologists, endocrinologists, geneticists and surgeons.”
Anna (not her real name) also favors the concept of the “third sex” that Sulina discussed. The support group she founded is called Orchidea, after the orchid flower, which looks like the sex organs of both a man and a woman. It is also the symbol of one of the intersex support groups in England.
Anna belongs to a group whose genetics are male (XY) but whose bodies are not responsive to the male hormone.
“They decided to raise me as a girl,” she says. “They cut off the penis, which was very small, and cut off the testes. And yet when a stranger encounters me on the street, he usually thinks I’m a man. I have the gestures of a man. When I meet a friend, for example, and we embrace, I thump him on the back like a man. However, the way I sit is actually very feminine.
“After I found out my condition – and that was by chance, roaming around the Internet – I was angry at the whole world, especially the doctors. Anger is a necessary stage which must not be dismissed, but you have to move on. Today I am not angry with the doctors, because they are simply a part of society and don’t know any better.
“The social order demands a determination: man or woman. Take, for example, the division of restrooms. There are women’s and men’s. A lot of times when I enter the women’s restroom someone is startled, because she thinks I’m a man. Why the panic? After all, the stalls are closed. What really bothers her is that I am a deviation from the proper order of things.
“One time, when I was speaking with my doctor about the possibility of a third sex, he asked: ‘So which restroom would the baby enter?’ People waste their lives on nonsense. If someone at a supermarket addresses me as a man and asks me to help him take a package down from a shelf, I don’t correct him. I mean, I’m helping him as a human gesture, so what does it matter if I’m a man or a woman?
“Society is locked into the existing order of male and female. An enlarged clitoris upsets only the proper order of things. Where did the concept come from that it must be removed? Society wants to normalize everything: an enlarged clitoris? Reduce it; undescended testicles? Amputate, impose a hormone regimen. The aspiration to normalize is cruel. It constantly causes me to compare myself to the norm.”
A friend − a very open person and enlightened, who also happens to be gay – told me that he once read a book titled “Psychoanalytic Reflections on a Gender-Free Case.” It presented a case in a manner that made it impossible to figure out whether the person in question was a man or a woman. Reading that book drove him crazy. He could not manage to shake the preoccupation with the question of whether it was a man or a woman. Might defining sex nonetheless be an essential matter in human experience?
“The difficulty people have stems from norms and from the social order they were raised into, and I don’t see why the social norms can’t be challenged. An evolved society is measured by its openness, its dynamic nature and ability to change, and the challenge today is not to accept the order that was. We are accustomed to sort out whatever seems to us a mess, because that is how we were raised, but this mess offers other possibilities of order.”
How are you feeling these days?
“In general, I’m good. I see myself as a woman with masculine gestures. And maybe it’s correct to say that on good days, I see myself as both. There are things about me that are very male, and others in which I am as feminine as it gets.
“That doesn’t mean I don’t have bad days. I am a strong woman, but I can get into very tough places regarding my body because when things are hard, it’s the easiest place to mess with.
“Ostensibly, a woman who has had her uterus removed is in exactly the same situation as I am, but there’s a difference: the secret,” Anna continues. “The doctors hid my condition from my parents, and I am in contact with one mother who approached the support group and is doing exactly the same thing to her daughter. No matter how I try to persuade her to tell her daughter about her condition, she does not agree. Even today, in my opinion, there are doctors who will not tell the adult woman sitting before them what she’s got in a clear manner. There are other doctors, too, but there is no uniformity in the establishment’s conduct.”
What bothers you most?
“The rush. Why is intersex considered an emergency? In cases of salt-regulation, prompt treatment is obviously necessary, but what is so urgent about determining the sex? Yes, there would be something unfair about coming to the doctors now and saying: ‘You should have done things differently.’ Maybe they were right and I had to be operated on early so I wouldn’t remember what they did to me − but hold on a minute. There’s no rush.
“It is important to look at the situation in a clear and open manner. If the doctors were to say that intersex is a viable condition, not a disaster, my parents and society would not treat it as a calamity.”
If you had a friend who was pregnant, who discovered that her fetus is intersex, would you recommend she keep the pregnancy?
“I have no idea how to answer that. First of all, nobody can know what’s best for someone else. My life is my own, and I could never tell someone else what to do. Stop taking hormones or not; leave the testes or amputate them; have an abortion or not. Speaking entirely for myself, I can say today that this condition has brought many special things into my life. Maturity is bought with agonies − also when it comes to someone who isn’t intersex. Depth comes out of pain. I wish that we, as a society, could deal with the multifaceted nature we all have.
“Today there is more tolerance for difference, there is more awareness that our sexuality is not completely absolute. And there are more possibilities. My mother always told me: ‘You will never marry and you won’t have children,’ but adoption is also possible. There are lots of options. The main thing is to get away from the secret. And to give love.”