What Does Intersex Mean & Why It’s Important To Support Intersex Rights
Although we are still fresh into a new year, I’ve already seen multiple arguments arising online around gender and sex identities. While this isn’t particularly new behaviour, it does feel frustrating that often science is used as a mask for hatred. One month in, and I’ve seen multiple people argue that gender is binary, there is no variation, and that this is enough of a valid reason to be hateful to anyone who doesn’t conform to gender norms.
The thing is though, this isn’t true. Something else I’ve noticed over the last few years is how badly educated people are when it comes to variations in sex and intersex people. Many people don’t know that intersex people even exist at all.
I wasn’t taught about intersex conditions at school. The first time I learned about intersex individuals was when I was 20, and trying to listen to all the episodes of This American Life from the beginning. Obviously this quest failed, but it did mean that I listened to the 15th episode, released in 1996, called Dawn. This episode tells the story of Dawn Langley Hall Simmons, one of the first people to have a sex reassignment surgery in America. In the episode, Jack Hitt eventually meets Dawn in person. He learns that Dawn was actually born female and was misidentified as male at birth due to the way her genitals looked. This forced her to grow up male before changing to her true gender identity in adulthood.
While some of Dawn’s claims were later disputed in a book published in 2004 (and she has since passed away, so it’s impossible to fully know the truth at this point), I actually don’t think this matters as long as she was happy living in the gender identity she ultimately chose. What is important, however, is how this episode highlighted the very real occurrence of people born with varying sex characteristics, outside of the binary, and the more complicated realities of sex and gender.
Underlying all of this is the perception that no matter the gender a person identifies as, they have an underlying sex they were born with. This represents a fundamental misunderstanding about the nature of biological sex. Science keeps showing us that sex also doesn’t fit in a binary, whether it be determined by genitals, chromosomes, hormones, or bones
How we define sex is complicated, and we need to acknowledge that intersex people exist and sex, in many ways, is a spectrum (you can view an incredible diagram visualising some of this here).
Because intersexuality is so misunderstood and under-discussed, I thought I’d spend some time today explaining what intersex means, and why intersex rights are so important.
What does intersex mean?
Intersex is an umbrella term, describing anyone born with a reproductive or sexual anatomy that doesn’t fit the typical definitions of male and female. It isn’t a medical condition, but is a term that stands for the spectrum of natural variations of sex characteristics that naturally occur within the human species. It’s not an abnormality or a defect, just a difference from the most common norms. Most intersex people are perfectly healthy, only a small number have medical conditions that require any kind of treatment.
There are many types of intersexuality, so no two intersex people are the same. The varying characteristics of intersex people can be chromosomal, hormonal and/or anatomical, and can be present to differing degrees: some are immediately detected at birth, some only become evident at later stages in life such as puberty or finding themselves infertile as an adult, and some people live their whole lives without ever knowing their intersex, and this being revealed during autopsy.
Last year, for example, surgeons reported that they had been operating on a hernia in a man, when they discovered that he had a womb. The man was 70, and had fathered four children.
Some examples of intersex variations include: a person might be born appearing to be female on the outside, but having mostly male-typical anatomy on the inside, a person born with mosaic genetics where some cells have XX chromosomes and some have XY, or a person born with genitals that seem to be in-between the usual male and female types.
Nature presents us with sex anatomy spectrums. Breasts, penises, clitorises, scrotums, labia, gonads—all of these vary in size and shape and morphology. So-called “sex” chromosomes can vary quite a bit, too. But in human cultures, sex categories get simplified into male, female, and sometimes intersex, in order to simplify social interactions, express what we know and feel, and maintain order.
So nature doesn’t decide where the category of “male” ends and the category of “intersex” begins, or where the category of “intersex” ends and the category of “female” begins. Humans decide. Humans (today, typically doctors) decide how small a penis has to be, or how unusual a combination of parts has to be, before it counts as intersex. Humans decide whether a person with XXY chromosomes or XY chromosomes and androgen insensitivity will count as intersex.
In our work, we find that doctors’ opinions about what should count as “intersex” vary substantially. Some think you have to have “ambiguous genitalia” to count as intersex, even if your inside is mostly of one sex and your outside is mostly of another. Some think your brain has to be exposed to an unusual mix of hormones prenatally to count as intersex—so that even if you’re born with atypical genitalia, you’re not intersex unless your brain experienced atypical development. And some think you have to have both ovarian and testicular tissue to count as intersex.
The actual intersex community are clear that intersex is most importantly about biology, not sexuality or gender. Although some intersex people may identify as LGBTQ+, this is additional to their intersexuality. Intersexuality is, therefore, not the same as being transgender. Intersex and trans people can have some similar experiences, and some intersex people may also be transgender, but there are important differences (some intersex people view themselves as part of the LGBTQ+ community while others don’t, it depends on personal choice).
How common is it?
There are over 30 intersex variations, and intersex traits occur in up to 1.7% of the population. This means being intersex is as common as being born with red hair.
That being said, it’s difficult to fully nail down the answer to this question, due to differing opinions on what counts as intersex. However, if you ask medical experts how often a child is born with noticeably atypical genitalia that requires calling in a specialist in sex differentiation, the number is around 1 in 1500 to 1 in 2000 births, however there are more people born with subtler variations that won’t show up at birth.
An article by Anna Fausto-Sterling for Brown University extensively reviewed medical literature from 1955 to 1998 for the frequency of sex variations, here are some of the findings (summarised by Intersex Society of North America):
- Not XX and not XY one in 1,666 births
- Klinefelter (XXY) one in 1,000 births
- Androgen insensitivity syndrome one in 13,000 births
- Partial androgen insensitivity syndrome one in 130,000 births
- Classical congenital adrenal hyperplasia one in 13,000 births
- Late-onset adrenal hyperplasia one in 66 individuals
- Vaginal agenesis one in 6,000 births
- Ovotestes one in 83,000 births
- Idiopathic (no discernable medical cause) one in 110,000 births
- Complete gonadal dysgenesis one in 150,000 births
- Hypospadias (urethral opening in perineum or along penile shaft) one in 2,000 births
- Hypospadias (urethral opening between corona and tip of glans penis) one in 770 births
- Total number of people whose bodies differ from standard male or female one in 100 births
- Total number of people receiving surgery to “normalise” genital appearance one or two in 1,000 births
Of course, frequency varies massively depending on the variation, but an overall number of 1/100 who differ from standard male and female categories pretty clearly suggests that sex is more of a spectrum than many people realise.
What intersex advocates fight for
Intersex people, despite having nothing wrong with them, are subject to multiple abuses because of their intersexuality. The worst of these is that many intersex youths around the globe are subjected to non-consensual surgeries, including sterilisation, to make them fit into ‘normal’ male-female binary categories. These surgeries are classified as human rights violations by the UN, and the 2015 Central Remedial Clinic (CRC) Ireland Report stated that these procedures are detrimental to the physical and mental health of intersex people.
All people have the right to autonomy over their own bodies and identities, and intersex people are biologically born outside of the binary. Many find themselves struggling to fit into a society when their gender has been assigned to them before they were too young to have a say in the matter, leading to increased likelihood of mental illnesses as well as physical problems such as ” loss or impairment of sexual sensation, painful scarring, and painful intercourse”. (source)
It’s also important to note that intersex people often do not want to be referred to “hermaphrodites”. Most consider it stigmatising and misleading. While some medical personnel may still use this term, it is considered outdated and clinically problematic as it fails to reflect modern scientific understandings of intersex conditions, while also confusing clinicians, harming patients, and panicking parents. Some intersex people may seek to reclaim the word, similar to how some LGBT people have reclaimed words like ‘queer’, but it’s better to avoid it unless specifically directed not to.
Intersex advocates have focused on three main goals over the years:
- End surgeries and other medical procedures forced on non-consenting intersex children to try to erase their sex variance
- Educate parents and society about how intersex statuses are common, and that intersex kids will be fine as long as they have support from their families and communities
- Fight discrimination against people who are physically sex variant
The argument of sex as defined by chromosomes alone is one we often hear used against trans people, but we must recognise that it is also very harmful to intersex people.
Of all the sex characteristics that can vary in intersex people — genitals, gonads, hormones and chromosomes — up until now, chromosomes have been the least relevant to both our lived experience, and to decisions doctors have made about intervening in our bodies. The memo picks chromosomes as the one “real” sex determinant because its goal is to declare gender transition impossible, and the one sex characteristic doctors can’t change are our chromosomes. Since they can’t change chromosomes, doctors change our genitals and gonads and hormones instead.
For example, when intersex children are born with Partial Androgen Insensitivity Syndrome, with XY chromosomes and intermediate genitalia, often doctors surgically assign them female. This may be very traumatic for the child, but imagine how much more traumatic it would be to hear, “Wait, the federal government now states that anyone with XY chromosomes is a man. You are living in the wrong gender. The surgeons who operated on you shouldn’t have cut off your phallus, whoops. Guess you’ll need a new surgery.” This is horribly cruel, and the fact that this is probably an unintended consequence for memo authors who have little knowledge of intersex people doesn’t make it better. If anything, it adds insult to injury…
Now is the time to look within ourselves and contend with the ways in which we have been complicit in the creation of this current intersex and transphobic atomsophere. Trans Exclusionary Radical Feminists (TERFs), and everyone who believes that transwomen are not “real” women, I’m looking at you.
Ultimately, society needs to start recognising that being intersex is not an issue, society’s response to it is. When governments refuse to accept anything outside of two sexes, doctors do not respect bodily autonomy by performing unnecessary non-consensual medical interventions, legislation doesn’t protect intersex people, and intersex issues aren’t publicly discussed, then discrimination will continue.
In fact, evidence shows that children who grow up with intersex genitals do well psychologically, showing that surgeries that occur before the age of consent don’t help at all. Ambiguous genitalia are not a health risk, they just look different to some people. As well as these surgeries becoming illegal, parents of intersex children need to have access to more information on available evidence and alternatives. For example, they are often not told that gender identity may emerge from prenatal hormonal actions on the brain, meaning a surgery in infancy will not make a child maintain a particular gender identity.
When we demand that they end intersex genital mutilation, the surgeons who were calling us intersex in recently published journal articles suddenly declare we’re not intersex anymore and instead we’re females or males with genital anomalies. When we chant “respect intersex kids’ rights,” they flip the script again and state “parents rights!” And this is symptomatic of a larger irony in which the US calls out FGM abroad, while allowing surgeons to commit intersex genital mutilation here. Anything to uphold the false sex/gender binary I suppose…
The United States has always attempted to brutally erase intersex, trans, and GNC people. This is nothing new. One only needs to look as far back at how settlers colonialists attempted to decimate two-spirit people, or the ways in which the medical industrial complex has attempted to do the same to children born with intersex traits since the 1950s, and how the state attempted to allow AIDS to ravage our queer and trans communities. Yet, we fought back.
The intersex flag, designed in 2013 by Intersex Human Rights Australia. Yellow and purple are both seen as non-gendered colours, while the circle symbolises wholeness and completeness.
Intersex advocates are also not asking for children to be raised in a third gender, as it is very difficult to define where intersex ends and male/female actually begins. Also, it is unlikely that it would be safer for intersex children to label them with a gender category that doesn’t really exist, and it could cause more trauma. Being intersex can be hard, so intersex groups advocate for providing parents of intersex newborns and children with honest and accurate information about intersexuality, psychological counselling from professionals who aren’t intersex-phobic, referrals to other people in similar circumstances, and medical help only when there are real medical problems. Assigning a child a gender at birth is assigning a label, which absolutely does not require a surgeon.
How do you pick a child’s gender if she or he is intersex?
The child is assigned a gender as boy or girl after tests (hormonal, genetic, radiological) have been done and the parents have consulted with the doctors on which gender the child is more likely to feel as she or he grows up.
We know, for example, that the vast majority of children with complete androgen insensitivity syndrome grow up to feel female, and that many children with cloacal exstrophy and XY chromosomes will grow up to feel male.
In cases of intersex, doctors and parents need to recognize, however, that gender assignment of infants with intersex conditions as boy or girl, as with assignment of any infant, is preliminary. Any child—intersex or not—may decide later in life that she or he was given the wrong gender assignment; but children with certain intersex conditions have significantly higher rates of gender transition than the general population, with or without treatment.That is a crucial reason why medically unnecessary surgeries should not be done without the patient’s consent; the child with an intersex condition may later want genitals (either the ones they were born with or surgically constructed anatomy) different than what the doctors would have chosen. Surgically constructed genitals are extremely difficult if not impossible to “undo,” and children altered at birth or in infancy are largely stuck with what doctors give them.
This is a view that seems to be backed up by scientists
So if the law requires that a person is male or female, should that sex be assigned by anatomy, hormones, cells or chromosomes, and what should be done if they clash? “My feeling is that since there is not one biological parameter that takes over every other parameter, at the end of the day, gender identity seems to be the most reasonable parameter,” says Vilain. In other words, if you want to know whether someone is male or female, it may be best just to ask.
Hope for the future
Although arguments continue, there are hints of progress in some areas. Most recently, Iceland passed one of the most progressive laws on trans and intersex rights without any public conflict. There is still more to be done as it has not yet banned intersex surgeries, but what Iceland has done right is engaging and educating the public properly on gender and sex.
While there have been questions raised about the potential consequences of the law for women’s shelters, prisons, sports and recreational activities such as swimming (much like in the UK), they have quickly been answered by constructive and evidence-based discussions and inclusive policy making. In comparison, the toxic debate in the UK about the GRA is absurd. It shows that too much of the media narrative on trans rights in the UK has less to do with facts and more to do with manufacturing a conflict.
Trans people have been accessing gendered spaces openly for decades without trouble and are legally allowed to do so in Icelandic law, just the same as they are in the UK. Most service providers, whether they be rape crisis centres and domestic violence shelters, sports unions, prison services or city authorities, have always approached any issues from the perspective that trans people’s autonomy and gender identity are to be respected.
While much of the UK media often seems to give a voice to almost anyone with an anti-trans stance without checking their credentials or expertise, the Icelandic media has approached the issue from a respectful and non-reactionary point of view. This has benefited Iceland as a society, as people have been able to have important questions answered in a constructive and informative manner, without it becoming a toxic debate at the expense of trans people.
By comparison, the constant vilification of trans people in parts of the British media is a disgrace. We should all be mortified by how devious hate groups with anti-trans voices that base their poorly constructed arguments on bigotry and rightwing ideology have been presented. Parts of the British media have allowed themselves to be infected by hate and swayed by the misguided concerns of a small but vocal group of people.
Iceland’s steps forward may be small, but they show that things can and should be done across the world to protect intersex individuals properly.
Intersex advocates already know that there is nothing wrong with their bodies. It is our societal attitudes that must change, alongside law and legislation. Unnecessary and non-consensual surgeries must stop, intersex rights must be legally protected, and we need much wider education on the existence and rights of intersex people. And once we know more about intersexuality, it is up to us to spread this knowledge and to listen and support intersex activists in all the ways we can.
It might be more convenient for the U.S. federal government to have a binary system for determining legal sex; many U.S. laws and customs are built on this assumption. But just because it’s a convenient system of classification doesn’t mean it’s right.
Disclaimer: I myself am not intersex. If you are and would like to share your story or have something you’d like to be added to this post, please get in touch.