“Sometimes babies are born with ambiguity, so we don’t actually know whether they are male or female”
Cut to a sample of those who we will see interviewed, who explain a family member thought they’d be better off dead, of those in the delivery room looking embarrassed at their feet when it was realised the child had ambiguous genitals…
“so how can there be more than simply male and female?”
Delivery rooms, with mums and new babies, presumably not with ambiguous genitalia going by the he and she, and we wanted a girl, but…
“the thrill of a new baby never goes away”
says the midwife. Lots of happy smiling faces, and we are told that sex of a baby what is usually the question people ask first. When told, this, it is emphasised is a“lovely moment”. But, ominously, for some parents, it is not always that straightforward we are told. Cut to a door being opened, and an actor speaks
“they took us into a room…”
a room which seems to swirl psychedelically, as she says her little boy also looked like a little girl. Giving birth to a child like this, the narrator tells us, can be frightening and confusing. Most parents want to protect the child’s identity through being anonymous, we are told, and once more the room begins to swirl…
The actress was scared, for him, for them, and for the effect it would have on the family – as the focus moves from a swirling room to a rippling, molten, plastic fan – and then fully exposed, the actress tells us that she knew she owed it to her new son to sort it out. She explains how one day she had a son, then the next day she has to explain to people how she hasn’t got a boy, she’s got a girl. The actress begins to cry as she explains they were going to move, to America or Australia, to get away.
The narrator tells us that many parents will respond with shock and fear, because sexual ambiguity does not fit our clear-cut view of male and female. A man in surgical overalls scrubbing up tells us that some little girls have male genes and produce male hormones, but look like little girls. While some babies look like little boys, and have female genes and female internal structures.
Notice the asymmetry here. In the case of the XX baby who looks like a boy, he hesitates, seeming to avoid using the equivalent word to ‘little girls’ – ‘little boys’. Babies born XY who look female are described as girls who produce male hormones, while babies born XX who look like male are described as babies with internal female structures. For these to be treated equivalently, there would need to be some reference to the hormones of the XX looking like a boy babies (which would be ‘male hormones’, presumably) and some reference to the internal structures of XX looking like girl babies, which would (in part anyway) be ‘male structures’. Of course the use of male and female hormones, male and female chromosomes, male and female internal structures is erroneous, but used to explain these things to mere mortals. But, the lack of equivalence signifies something deeper, the surgeon cannot bring himself to describe the XX looking like a boy baby as ‘a boy’, because he knows deep down that it really is ‘a girl’, and will at some point intervene to ensure this child stops looking like a boy – while on the other hand, he will do what he can to make sure the XY looking like a girl baby stays looking like a girl. Both are out of the boys-club, as far as he is concerned. They failed that test already.
An associate of mine, Dr. Lih Mei-Liao, wades in straight away, and tells us we have been fed
“a tale of two sexes”
with a smirk (these kind of throw away puns are rife in the field of intersex – even experts cannot help themselves when there is a chance to latch onto something that might raise a little snigger, sometimes even at our expense, often quite openly. She gets into how we see maleness and femaleness as two discrete things that do not meet in the middle. Instead she says there is huge overlap in terms of ability, sexuality and anatomy.
Cut to picture of men and women in white underpants and singlets standing in a clearing in a wood, as the narrator tells us that there are a two dozen conditions that blurr the line between male and female. These, we are told are
“Disorders of Sexual Development”.
A Urologist from the USA appears to tell us that “DSD’s” affect a broad range of people, from girls who look more masculine – which he qualifies with “initially” (presumably he is going to make sure he fixes that, eventually…) to boys who are undermasculinised.
The narrator says that many of these conditions are relatively rare, but some are surprisingly common, such as the milder forms. DSD’s occur as frequently as twins or red hair, and there will be as many as 12,000 people affected in a city the size of London.
Moving on from the genitals, we are told that DSD’s can affect general health as well. We meet Jenny, who has CAH, which we are told means the adrenal glands don’t work properly. The failure to produce cortisol when the body is under stress, Janet explains, can threaten the body itself. Instead of fighting infections, the body collapses, and can be life threatening. The narrator steps in and tells us that as well as producing insufficient cortisol, the body produces too much testosterone, and she manages to steer us back to ambiguous genitals. So, when Janet was born, they had trouble telling if she was a boy or a girl.
Now we are shown a ultrasound scan that morphs into CGI dough-boy foetus with neutral genital characteristics. Male and female genitals develop from the same tissue, but it is testosterone that makes them look different. As the genitals morph away, we are introduced to a very tired looking Sarah Creighton, who like Leh Mei is a lovely person. She explains that left alone, this tissue will start to look like a clitoris, but of exposed to testosterone it will grown into something that looks like a penis. Similarly, the tissue that becomes the labia in a girl will become the scrotum in a boy, she explains wearily, probably for the hundred-and-first time…
The dough boy’s clitoris enlarges, and we are told that Janet’s clitoris was enlarged so that so that she appeared somewhere between male and female. This concerned her parents, and because of her appearance and the other health problems, her grandfather suggested to her father that it might be better if she didn’t live. What kind of life could she have if she wasn’t going to be able to grow up, marry and have children.
Howard ‘Tiger’ Devore explains that he is a clinical psychologist who works as a sex therapist and spent a lot of time working with people with ambiguous genitalia, people he calls ‘intersexed’. These are people who are raised with a lot of shame and secrecy, and as babies are hidden from society.
“I really understand that experience, because that was the way I was born and that was my experience of growing up.”
He sees parents who go through a lot of fear and guilt over having a child like this, parents think it is their fault, and there is a lot of stigma and shame involved in having a kid that’s ‘different’.
A US clinical psychologists explained how one parent said she wished her child had cancer, because people knew about that, so it was easier than having to say the child has mixed gonadal dysgenesis. It can be isolating, and shame sets in early, because it is about genitalia, and sometimes they can’t even say whether it is a boy or a girl. Tiger Devore says that the process of checking what the chromosomes are, of testing to see how tissue responds to different hormones, can be a messy process.
The dough-boy foetus is shown again, as the narrator explains that the doctors will try to work out what happened to the child before birth. They check the chromosomes to see whether the child is genetically male or female, whether the baby has ovaries or testes, whether they have a womb, what hormones the body produces and how the baby’s genitals might develop. The US urologist appears again, and explains this is an investigation, and they are like detectives trying to find out what the internal and external structures are. This is explained by use of a chart, which while it shows the following, the speaker describes the female appearance as ‘normal’, and omits the description of ‘male appearance’:
Testes + XY + (normal) female appearance + female identity
Ovaries + XX + (male appearance) + male identity
The narrator adds, that these are not even ‘either/or’, people can appear in between male and female, and the chart demonstrates this. Tiger explains that you can end up with a variety of differences when things don’t all balance out correctly. But usually, he says, things balance out in a “normal” (he gestures the quotes) predictable way: typically,
“females who develop as little girls, and males who develop as little males”
as we see a variety of non-gendered children’s toys cut to gendered toys like dolls and trucks, and these are what we typically see, is there is a difference. Determining what those differences are is what DSD (he refers to ‘differences of sexual development here’, rather than disorders) is all about.
The US psychologist says that what amazes her is that there is such a continuum of development between male and female, and it is hard to draw a line in the middle. But, the narrator reminds us, a sex has to be written on the birth certificate – and the doctor’s have no choice but to assign male or female; this will be what they and the family believe the child will be able to identify with best.
This was Janet’s situation, she was assigned female as she had female chromosomes, womb and ovaries, but male looking external organs; her parents had to decide whether to allow surgery to make her look more female, and at that time this was standard practice and unquestioned. As she speaks the camera pans across a variety of surgical instruments, including a bloody scalpel. Janet says her first memory was of being in a hospital when she was two, and she knew she had to brave when her parents left the room. Nobody looked her in the eyes, nobody asked if she was OK, and only looked at her to lift up the sheets; she coped with this by cutting her mind off from her body. She tried to ask her mother why she was different from other girls, hoping she would tell she was OK, but soon ended up having surgery again, for the third time.
Tiger tells us that many people remember being kids in hospital, pain around their genitals, with no explanation, and who still have trouble with their genitalia. Janet says that her and other parents didn’t understand, and the doctors described the child as not being completely developed in the womb, and offering to take care of this in a way that sounded quite trivial. Parents are reluctant to talk about their child’s genitals, and they go along with them. Tiger describes how his genitals appeared somewhere in between male and female. The narrator explains this as severe hypospadias, which in milder forms affects as many as one in 250 men. Tiger says the doctors told her this could be fixed in a couple of minor surgeries: he has had 20 surgeries; starting at 3 months old, he says, they start to cut him up and make him into what they think he should be. He considers all the surgeries he had before he was 19 were unnecessary failures in which he lost a lot of feeling tissue which he would still like to have. This was taken from him. He had to have a catheter for urine, which meant he had no opportunity to identify as a sex, not just in the bathroom, but in sport. This led to confusion about his gender role and group. He went through a lot of pain and invasive procedures (back to images of surgical instruments, including the scalpel, but this time a wad of bandage is dipped into a tub of blood), and his mum felt terrible, and he felt bad about it. This is why he does the work he now does, to try and reach out to people who feel isolated. Cut to Tiger interviewed on a radio talk show.
The US psychologist explains that today medicine is less paternalistic than it used to be, and parents are involved in discussion and decision making from the start. The US urologist explains their ‘DSD’ team takes a multi-specialism approach, which ‘heavily’ involves the family, endocrinology, urology, genetics, psychology, social work, in treating a child with a complex ‘disorder’, which needs all this ‘expertise’ for treatment…
The narrator informs us that in the UK a multi-disciplinary approach is also used. A UK clinical psychologist explains that her role is to explain that parents are told of the consequences of early surgery, that there will be scarring, that the genitalia will not look like somebody without ambiguous genitalia’s genitals, the risk of loss of sensitivity which will be important for the child when they become an adult.
The narrator explains that people now agree about openness and inclusion where parents are concerned, but the debate about when to operate persists. Tiger tells us that a lot of activists describe such surgery as ‘mutilation’. The Sarah Creighton explains that parents worry that if they bring up a child as girl with genitalia that look male, she will be bullied and teased, and it will make things like swimming difficult.
The American urologist, who it would not be overstating to say has mad staring eyes, tells us that when they operate on the child as a foetus, this works very well, and things heal easily and quickly; so too, infants respond and heal better than adolescents and adults. The narrator says it is nearly impossible for parents to decide. The actress playing a mother says that they were told their baby would need three to five intensive surgeries in order to be able to function as a man, which would never happen the way he then was. She describes his genitals as looking like a dog had got hold of him, and that he would have no sexual future; she couldn’t see how he would be able to even urinate, and was devastated. She does not say where this was in relation to the surgery – it sounds like this was through the course of the surgeries. She feels it was the right thing to do; it wasn’t cosmetic, it was to function, and she had no choice.
The narrator says that each case is different, and sometimes there many be good reasons to postpone surgery. The US woman who spoke earlier about her experience with CAH tells us that you don’t always know how a body will grow, what the hormones will do in the future; so she recommends waiting, because what looks like a large clitoris on a newborn baby, once the child’s own hormones have settled down, may not look so big as they get older. The UK urologist spells out that 90-95% of girls with CAH who have surgery as infants require further surgery in adolescence.
Tiger says that unless it is absolutely medically necessary, when it comes to simply changing the appearance of genitals, they should not be cut at all, and cutting should be prevented. The genitals belong to the child, not the parents, nor the doctors; as a young adult, they will want their genitals to work.
The mad scientist US urologist says that he’d like the child to be able to decide, but if you wait until they are old enough to say ‘yes’ (note here he does not acknowledge a possibility that they might say ‘no’), he rhetorically asks whether you hurt them by not performing surgery, or giving them medication, earlier. So, he defends the undermining of the child’s rights, and the cutting of their genitals, on the basis that it would be harmful not to – although he does not say what that harm might be. The US psychologist adds how they had one girl with CAH who had no ‘re-constructive’ surgery, and at 7-8 years old has a 7cm, typically male, clitoris. When asked how she sees herself, she says she doesn’t really know if she’s a boy or a girl. She’s a girl in her head, and a boy below the waist, and doesn’t know what she can do about it. The US urologist says they want to make sure they are making the proper decisions and care long term. The US psychologist says they try to be honest about what is achievable when they make recommendations.
The scene is of a girl with AIS with her family in the kitchen. The narrator tells us that not all “DSD’s” are noticeable at birth, and only affect the internal organs, so are not obvious and can be undiagnosed for years. Katie had to have an operation for a hernia when she was six, during which the surgeon found an inguinal, undescended, testicle. It turned out she had no ovaries or womb, and her chromosomes were XY. Her mother explains how they tried to deal with this
“horrible thing”
happening to them, how they were burdened with this
“terrible condition”.
Her parents were both doctors, and found it hard coming to terms with this; they saw it as abnormal, their child was in the abnormal section of the medical book, which they found hard as physicians and as parents. Katie had AIS from birth.
The UK urologist from Leeds sets about drawing on board with marker pen to explain how boys and girls start out more or less the same in the womb:
If a Y chromosome is present it causes gonad to become testis
testis produces testosterone & anti-mullerian hormone
testosterone causes male genital development
anti-mullerian hormone prevents female genital development
The narrator picks this up using the dough-boy foetus:
Without a Y chromosome the gonads becomes ovaries
ovaries produce lower levels of testosterone
less testosterone causes female development
The urologist from Leeds explains that there are conditions where things don’t work normally. So, in AIS, there is a Y chromosome, and testes that produce testosterone, but the body doesn’t respond to it in the normal way. The baby is born looking like a normal girl. Katie explains she was always a girlie-girl, liked wearing dresses, etc. Her mother explained that at medical school they were taught that such women were never to be told about their diagnosis, chromosomes, testes, because it would be so devastating they would kill themselves. Katie looks fed up as her dad asks what parent wants to give their kid information that might lead them to hurt themselves. He says it was a difficult, sad, time; at the same time, she was a happy six year-old, talented, girl, so they kept it to themselves to see what happened. They felt difficult keeping it from her, so let her know a little bit at a time. It changed Katie’s world, and she was sad seeing pregnant women or little babies. They didn’t tell her about her chromosomes, or that she’d had testes, until she was a teenager, and she was very angry with them that they kept it from her for 12 years, even though all those around her knew – other doctors, grandparents, and so on. And she was scared. She could not see herself as so different from other women, and wondered if she could ever be loved. She had her testes removed, and put on HRT to replace the testosterone with appropriate hormones.
Katie thinks our definitions of what sex is are inappropriate, but going by what is available, she doesn’t feel able to define her sex as male or female, although her gender identity is very female.
The image cuts from Katie to people in their underwear again. And the narrator explains that being male or female is more than our biology; it is about who we feel we are, and how we live. Life with a DSD becomes more challenging in relationships. Janet, the woman from the USA with CAH says it is difficult when you have a body you know is different; what you feel in the first moments as you move towards nakedness with somebody is fear, rather than anticipation. Is there going to be a reaction, fear? She says what she has learned is that
“people don’t fall in love with genitals, they fall in love with your soul”.
She says that is what people are attracted to, and it is important for people to know this.
A young English couple with Yorkshire accents talk about how they met in a pub in Leeds as they are shown walking along a street in the UK. The urologist at Leeds explained how Jess was referred to him by her GP, because she had not started her periods by 17. Jess was found to have Rotikansky Syndrome which affects one in 6,000 women. She was born with no womb, but in all other aspects like any other woman. It didn’t change how her partner feels about her, and as both her ovaries work, she will be able to have IVF and surrogacy. Jess’ condition, the narrator says, is not hereditary, but some “DSD’s” can be.
Janet’s CAH is hereditary, so she had tests before getting pregnant. She says having children was great for her, because she wasn’t having to be alone and trying to figure stuff out. She was diverted by daily life. Being a good mum made her feel better about herself, and get through life and understand. She feels that having children saved her life. She realised that there was nothing she had done that was her fault, nothing that was shameful; she got to a point where she was OK with herself. Whatever she found out about what had happened wasn’t going to destroy her life. Her mother says she is a great mother, has a wonderful life, and has done great things with her life.
Switch to film of two women preparing to kayak in the UK somewhere. The narrator says that some people living with “DSD” will want to remain private and anonymous. We hear the voice of one such woman, as we see them kayak on the water:
“I’m not embarrassed about who I am… I’m incredibly proud of who I am”
but she remains anonymous because she is scared of what might happen. The narrator explains that Partial AIS means
“an intersex female with XY chromosomes looks more male at birth”,
and will be assigned male on the birth certificate. The kayaker explains that she is 100% female, but she was born with a “DSD”, and assigned male. She realises that was the medical understanding at the time, but says it was one of the worst times of her life. She was raised as a boy, which was hard. She was ridiculed because of the way she sounded and how she looked – the speaker clearly has a voice that has never broken. Feeling like a girl, with a body that wasn’t developing like a male’s, she had to use boy’s changing rooms; she was terrified. As she entered adolescence, her development became mixed, and her body became more female as she got older rather than male. She and her family experienced a lot of prejudice. Her mother talked about the bigotry, hurt and unkindness they experienced as a family; and how this forced her daughter to leave home. Once she was able to see the right specialists, she was given a better understanding of her “condition”, she says they are a “great bunch”, and she is OK. Her mother talks about the love she has for all her children. The kayaker says that at the moment in the UK, as a woman born with XY chromosomes, she is not allowed to change her birth certificate from male, so has no right to get married in the same way any other female can.
Switch to the House of Lords, and the narrator introduces us to Lord Stephenson of Balmacara, as the kayaker meets him. He says that the law when it was formulated did not adequately deal with XY women, and it should be amended. He says that his interest in intersex comes from having mild hypospadias himself, and is aware that this an area that is not well known, and needs more attention – both medically and legally – and remedy the injustice.
Lih Mei is often humbled by patients’ abilities to find their own solutions; nobody, regardless of the care related to their “DSD” diagnosis, she says, should give up. Patients and families should never give up, and the as carers never give up, regardless of the person’s history who comes to them.
“I have to tell you for most of my life, I was a fucking mess. I really was”
Jess, the mother with CAH, says she lived her life, and it was great, but psychologically she was stuck and struggled. And was scared. Things have improved since she got her medical records, and she realised there were others like her. She says she is not a person with a “DSD” – she is a real estate agent, a mum, she laughs
“I’m a normal person”.
Tiger talks about how he’d like intersex individuals to be accepted: he’d like to see the tyranny of being forced into ticking M or F on forms change, to have more options.
“When I look in the mirror I see someone who has come through something challenging”
says Katie, the young woman with AIS,
“and has made a lot of good out of that challenge.”
Someone who likes to read, sing, dance and spend time with friends, a daughter, sister, partner, who will one day be a mother and grandmother;
“I see all of those things before I see someone with a DSD”.
Finish with people in their underwear standing in a clearing in a wood.
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