«Before the world decides»: intersex people, childhood surgery and the right to decide

«Before the world decides what's allowed,»

It's a line from «Before the bells», a song that opens with a copla lament, «ay, mi pena», and then switches entirely to English. I wrote it thinking about that still moment before the world starts making demands, and I already wrote about that reading, grief without ceremony, in «La hora antes de las campanas». (The full lyrics are on gayfolkplanet.com.)

But every time I reread it, one line takes me somewhere else. Before the world decides what's allowed. For some people, the world decided what was allowed for their body before they could even talk. Doctors decided it, often with the best of intentions, and frightened families accepted it because nobody explained there was another option: waiting.

This piece is about intersex people. The I in LGBTI that's almost always said quickly and almost never explained. I'm writing from the outside, as a gay man who isn't intersex, so I'll try something simple: to set out what the laws, intersex organisations and international bodies say, without speaking on anyone's behalf.

The I that almost nobody explains

An intersex person is born with sex characteristics that don't fit typical definitions of a male or female body. Those characteristics can be chromosomes, gonads (ovaries or testes), hormones or genital anatomy, internal or external. Sometimes it's noticed at birth. Other times it appears at puberty, when the body doesn't do what was expected. And other times it's found out in adulthood, by chance, in a fertility test, or never at all.

It isn't a single condition but an umbrella covering many different variations. Some have well-known medical names: androgen insensitivity syndrome, complete or partial; congenital adrenal hyperplasia; Klinefelter syndrome; gonadal dysgenesis; 5-alpha-reductase deficiency. Each is different, and each person lives it in their own way.

How many people are we talking about? It depends which variations are counted. The United Nations, in its Free & Equal campaigns, has circulated the estimate that up to 1.7% of the population is born with intersex traits, a figure that comes from the work of biologist Anne Fausto-Sterling in 2000. Other authors, with much stricter definitions, have given far lower figures. The debate is real, but the substance doesn't change: these are people who exist, who have always existed and who shouldn't have to justify their bodies.

Three things that often get confused are worth clarifying:

• Intersex isn't the same as trans. Being trans has to do with gender identity; being intersex, with the characteristics of the body. An intersex person can be cisgender, trans or non-binary.
• Intersex says nothing about orientation. There are intersex people who are straight, lesbian, gay, bisexual or asexual, as in any other group.
• The word «hermaphrodite» is outdated. It comes from Greek mythology, was used for centuries with connotations of monstrosity or freak-show curiosity, and most intersex organisations reject it today.

The body before the name

In «Before the bells» there are two consecutive lines that, read here, give me goosebumps:

«Before the names are spoken into stone, / Before the body learns to stand alone,»

That's the exact description of the moment when, for decades, decisions were taken about intersex babies: before the final name, before the body could say anything.

From the 1950s onwards, in the United States, a medical model associated with psychologist John Money and Johns Hopkins Hospital took hold. The idea was that gender identity was learned, that children were a blank page, and that if the body was «normalised» early with surgery and the child raised in the chosen gender, all would be well. That model recommended operating as soon as possible and, often, never telling the person anything.

For years the case used to justify that theory was David Reimer's, a Canadian boy who wasn't intersex: he lost his penis in a botched circumcision in 1966 and, on Money's advice, was raised as a girl. It was presented as a success for a long time. It wasn't. Reimer rejected the identity imposed on him, went back to living as a man and told his story publicly. He died in 2004. His case showed that identity isn't manufactured in an operating theatre.

The underlying logic of that model resembles other «corrections» the LGBTI community knows well: the idea that there's a right way to be and that medicine can put back in place whoever strays from it. I wrote about the therapies that promised to cure homosexuality in «No hay pastilla que cure lo que no es enfermedad». They aren't the same thing, not remotely, but they share an uncomfortable question: who decides which body or which desire needs fixing?

Operating to reassure the adults

Intersex organisations have been denouncing the same thing for more than thirty years: many genital surgeries on babies and young children aren't urgent or necessary for health. They're done to make the body look more «typical», to reassure parents or to fit an idea of normality. And they have consequences that can last a lifetime: scars, loss of sensation, pain, further operations, lifelong hormone treatment if the gonads are removed, and sometimes an assigned identity that doesn't match the person's own.

A very careful distinction is needed. Some intersex variations do require urgent medical care. Congenital adrenal hyperplasia, for example, can cause severe salt loss in the first days of life, and that's treated with medication. Nobody disputes medicine that protects health. What's disputed are irreversible interventions on the genitals or gonads that could wait until the person can give their opinion.

In 1993 the activist Cheryl Chase founded the Intersex Society of North America in the United States. On 26 October 1996 a small group of intersex activists protested in Boston outside the American Academy of Pediatrics conference. That date became Intersex Awareness Day, held every 26 October. There's another date, 8 November, Intersex Day of Remembrance, which marks the birth in 1838 of Herculine Barbin, a French intersex person whose memoirs Michel Foucault published in 1978.

In 2006 an international medical consensus proposed replacing the old terms with the expression «disorders of sex development» (DSD). For some families it was progress compared with more offensive words. For many intersex organisations the word «disorder» still treats as an illness what is a variation of the human body. Today you also hear phrasings like «differences of sex development». Again, what matters is to ask each person how they prefer to be named. Words matter a great deal when they describe a body, and in «Todas y todes» I wrote about how Spanish grammar has been stretched to name realities that previously had no place.

What's allowed before you can have a say

The line that gives this piece its title is, deep down, asking who has the right to decide:

«Before the world decides what's allowed,»

In recent years some countries have started to answer: the person who should decide is the person themselves, when they're able to.

The first was Malta, which in April 2015 passed a law on gender identity, gender expression and sex characteristics that bans non-urgent medical interventions on minors' sex characteristics without their informed consent. It was a pioneering law worldwide. Since then other rules have followed, with differences, in countries such as Portugal, Germany, Iceland and Greece.

In April 2024 the UN Human Rights Council adopted for the first time a resolution specifically on intersex people, 55/14, to combat discrimination, violence and harmful practices against them. It passed with 24 votes in favour, none against and 23 abstentions. That there were so many abstentions says a lot about what remains to be done.

What the law says in Spain

Spain incorporated these ideas into Law 4/2023, the same law that regulates gender self-determination, which I discussed in «Me da igual si es chica, chico, trans o neutral». Its Article 19 is devoted to the health of intersex people and says very specific things:

• Healthcare will follow the principles of non-pathologisation, autonomy, informed decision and consent, non-discrimination and respect for privacy, avoiding unnecessary examinations or exposure of the body without a directly related diagnostic or therapeutic purpose.
• Genital modification practices on minors under twelve are prohibited, except when medical indications require otherwise to protect the person's health.
• Between twelve and sixteen, those practices are only permitted at the minor's request, provided that, given their age and maturity, they can give informed consent.
• Public authorities must promote protocols that guarantee, as far as possible, the minor's participation in decisions, as well as advice and support, including psychological support, for intersex minors and their families.
• Before any treatment that could compromise reproductive capacity, access to freezing of gonadal tissue and reproductive cells must be guaranteed.

There are important nuances. The «medical indications» exception is broad, and intersex organisations are watching how it's interpreted. The ban refers to genital modification and doesn't expressly mention every possible intervention. But the change of approach is huge: for the first time, a Spanish law says that an intersex child's body isn't a problem to be fixed in a hurry.

A year with the box left blank

The same law changed something very symbolic in the Civil Registry. Law 20/2011 on the Civil Registry requires every newborn's sex to be registered. Since 2023 its Article 49 has a new paragraph: if the medical report indicates that the baby is intersex, the parents, by mutual agreement, can ask for the sex entry to be left blank for a maximum of one year.

The Instruction of the Directorate General for Legal Certainty and Public Faith of 26 May 2023 explains how it's applied: the Registry selects the intersex option in its system, the field appears blank in the entry and on certificates, and after nine months, if the parents haven't come back, they're sent a reminder. Once the year is up, the sex entry is mandatory.

Choosing a name is also part of that wait. Many families of intersex children opt for names that don't close doors, and the law allows the name to be changed later if the person needs it. I wrote about the right to change your name in «Tira de hemeroteca».

It's a year. It isn't much, and it doesn't settle the underlying question of why a baby's sex has to be registered in such a rush. But it's a year in which nobody forces a family to decide while they're still taking in the news. And that small margin, that blank box, reminds me of the song again: before the names are spoken into stone.

Silence is a scar too

Many intersex adults describe something that hurts as much as the operations: secrecy. For decades the recommendation was not to explain to people their own medical history. Some found out as adults, reading a report in secret. Some learned about their operations as children from a scar nobody explained. Some grew up thinking they had something shameful that wasn't talked about at home.

That silence has effects. Isolation, mistrust of medicine, the feeling that your body is a mistake. It's a form of paternalism similar to what many disabled people suffer, which I discussed in «Shutting every door»: others decide for you, and then tell you it's for your own good. Support organisations insist on the opposite: telling the truth, in words suited to each age, and putting families in touch with others who have been through the same. No child should grow up feeling their body is a secret.

I recently wrote about secrets and closets in «Tengo un amigo que…», and about talking about the body without shame in «Escribir sobre el cuerpo sin pedir perdón». The intersex experience is different, but it shares that idea: what's kept quiet weighs more than what's said.

In the song there's a line that seems to me a good answer to that silence:

«There is a warmth that doesn't ask for proof,»

An acceptance that doesn't require the body to prove anything, that doesn't wait for the test results before loving someone. It's what families can give from day one.

Sport and sex testing

One of the places where intersex people have been most exposed is elite sport. For decades, federations have carried out «sex tests» on women athletes, with methods that have changed over time: physical examinations, chromosome analysis, testosterone levels and, more recently, genetic tests.

In Spain there's a well-known case because its protagonist has told it in the first person. The hurdler María José Martínez-Patiño was excluded from competition in the mid-1980s after one of those tests revealed she had androgen insensitivity. She fought the decision, was reinstated and went on to become a researcher and an academic reference on the subject.

The debate on the participation of women with intersex variations in sport remains open and complex, and I won't settle it here. But I do want to underline something human rights organisations agree on: these athletes' medical privacy has been publicly exposed in ways nobody would accept for any other kind of health data.

How to support

If you're the family of an intersex baby or child, or if you've just found out you're intersex yourself, here are some ideas support organisations repeat:

• There's no hurry, unless health demands it. Always ask whether an intervention is urgent for health or can wait until the person can give their opinion. Spanish law backs you in asking that question.
• Ask for all the information. Diagnosis, options, risks, alternatives. Ask for a second opinion if you need one.
• Find other families. Talking to someone who has been through the same helps more than any leaflet.
• Talk to your son or daughter. In simple words suited to their age. Let them know their story, let them ask, so they don't find out by surprise.
• Protect their privacy. Not everyone needs to know, and the decision to tell will, in time, be theirs.

There's work to do at school too. Biology lessons still explain sex as two perfect boxes, XX and XY, without mentioning that reality is more varied. An intersex child hearing that lesson can feel they don't exist. Law 4/2023 asks for sexual, gender and family diversity to be part of the curriculum, something I discussed in «Que te molesta que tus hijos vean un beso», and bodily diversity should be part of that conversation, rigorously and without morbid curiosity.

And if you're neither family nor intersex, you can still do something: learn, don't make jokes about «weird» bodies, don't use the word «hermaphrodite» as an insult and remember that when we say LGBTI, the I is there too.

Before the bells ring

The song doesn't end with a victory. It ends with a very simple idea, staying where the breath stays true. And in the middle it has a line that seems to me the best summary of everything above:

«We sit with what we cannot make behave,»

For decades, medicine tried to make certain bodies behave as was expected of them. Today, little by little, another idea is gaining ground: that there's no need to correct what isn't broken, and that what's called for is to accompany, to wait and to listen.

Before the world decides what's allowed, there's a time when nothing has been decided yet. I hope that time lasts long enough for each person to decide for themselves.

Where to find support

I checked these resources today on their own websites:

• GRAPSIA, an association and support group for people with androgen insensitivity and related conditions, and their families. It has worked as a support group since 2000 and as a national association since 2003. Contact: info@grapsia.org, or by phone on +34 653 57 78 17 and +34 960 08 88 12.
• Kaleidos, an intersex organisation working on the psychosocial needs shared by people with different intersex variations or DSD, without replacing the specific groups.
• FELGTBI+'s Línea Arcoíris, free and confidential: 913 604 605 and WhatsApp 676 78 58 30.
• If distress becomes very intense, 024 answers at any hour, any day, free of charge and without asking for personal details, by phone or chat.
• 112 for emergencies and situations of immediate danger.
• If you live outside Spain, your country's emergency number (112 in the EU) and local intersex organisations; many of them belong to international networks and can point you in the right direction.

In «Salud mental sin tabú» you'll find more pieces and resources on asking for help.

Frequently asked questions

What is an intersex person? A person born with sex characteristics (chromosomes, gonads, hormones or genitals) that don't fit typical definitions of a male or female body. It can be noticed at birth, at puberty or in adulthood.

Is intersex the same as trans? No. Being trans has to do with gender identity; being intersex, with the characteristics of the body. An intersex person can be cisgender, trans or non-binary, and have any sexual orientation.

Are genital operations on intersex babies banned in Spain? Law 4/2023 prohibits genital modification practices on minors under twelve, except when medical indications require them to protect their health. Between twelve and sixteen, they're only allowed at the minor's request if they can give informed consent.

Can an intersex baby's sex be left blank in the Civil Registry? Yes, for a maximum of one year. If the medical report indicates the baby is intersex, the parents by mutual agreement can ask for the sex entry to be left blank; after nine months the Registry sends a reminder and after a year registration is mandatory.

When is Intersex Awareness Day? 26 October, in memory of the intersex activists' protest in Boston in 1996. Intersex Day of Remembrance is also marked on 8 November.

What is «Before the bells» about? The still moment before the world starts making demands. It opens with a copla «ay, mi pena» and continues in English, with a chain of «before…» lines that invites you to breathe and stay present without asking for anything more.

Who writes these songs? Mike Sain't Louis, lyricist, composer and music producer from Madrid, the first AI songwriter. The vocals on his songs are generated with artificial intelligence.