There are millions and millions of intersex people worldwide. This is what life is like for us

It is thought that more than one million Brits were born with a variation in their sex characteristics, otherwise known as intersex traits. That’s a lot of us, but what does it mean?

Intersex is a term for those of us born with sex traits or reproductive anatomy that does not fit with general expectations of male or female bodies. This could be our chromosome pattern, internal genitalia (for example ovaries, testes and reproductive system), external genitalia or hormones.

It is an umbrella term and covers a wide range of body types and lived experiences. People might find out because they are diagnosed at birth because their genitals are not average. They may experience puberty in an unexpected way – such not going through puberty at all, looking like a teenage girl but not getting a period, being a boy who feminises at puberty or a girl who masculinises at puberty. Or they might find out because adult life throws them a bodily-related curve ball – for example, fertility treatment might show that you have a less common chromosome pattern or you may be an adult woman who develops typically masculine facial hair.

Read more:

• I was born intersex but it was kept secret from me my whole life. I still live with the trauma
• There’s ‘awareness’ of trans people – but too often it’s the wrong kind
• Intersex people are treated like ‘freaks of nature’ and a ‘problem’ to be solved. That needs to change

People often ask if intersex traits began recently or if they have always existed. In the UK we have laws from 940AD and 1235AD which mention intersex people, and in the 1600s one of the foundational texts of common law, the Institutes of the Lawes of England, mentions intersex people. If you go further back in time the major world religions recognise that people are born with bodies which aren’t typically male or female.

Another question often asked is if intersex traits are more common in any region of the world or in any ethnicity. Apart from in isolated population groups (where heritable intersex traits may be more common), intersex people occur around the world with similar frequency.

Diversity in sex traits is therefore just a way that humans are born around the globe and have been for recorded history. So why don’t we hear more about it?

You will have met a person born with intersex traits, but this isn’t information which people tend to share unless you know them well. Even within families people often don’t talk about their genitals unless they must, and because of this it was difficult before recent internet developments for intersex people to find others with similar experiences or information about their bodies. Not understanding yourself and thinking that you are the only person affected leads to people concealing their worries and living in secrecy and shame.

In this context it is easy to think that the ‘problem’ can be ‘fixed’ by changing the person’s anatomy to be as similar as possible to the majority, and that when this is done the ‘problem’ will disappear.

Jim Ambrose is an intersex man from the United States who is speaking out about his life in The Secret of Me documentary on Channel 4. His story shows the acute suffering and damage this approach inadvertently causes when the person whose body is altered has no say in the process.

Intersex people in the UK often find themselves in a similar position to Jim. As Interconnected UK, a charity which provides peer support for intersex persons, we are regularly contacted by people who as children had their gonads removed or operations on their genitals without their knowledge or consent.

Jim says in the documentary that he “should have been left alone” as a child, instead of being operated on. His is regularly the firm belief of UK intersex adults who experienced childhood surgery. People should have control in decisions about their own body, meaning that non-essential medical interventions should be left until a person is old enough to decide for themselves what they want.

As Jim’s story shows, well intentioned surgery to help people ‘fit in’ can have devastating impacts on a person’s emotional, psychological and physical being. It is time to listen to intersex adults and reform medical practice in the light of lived experience, in line with World Health Organisation and UN guidelines.

Parents tend to be anxious about their intersex child. Will they be accepted? Will they find love, marry or make their way in the world? Looking at our cohort of intersex adults, it can be confirmed that being intersex doesn’t have to be a barrier to love, sex, marriage or deploying your talents in work. 

There is an alternative to making permanent changes to a child’s body based on guesses about what they might want when they become adults- providing a community of peers and psychological support until they can make their own, informed, decisions.

In common with other groups who live with bodily diversity, whether disabled people or neurodiverse, the challenges of our bodies are minor compared to living in society which doesn’t accept you for what you are. Life as an intersex person therefore isn’t always easy and in response, we are often a thoughtful, empathetic, tenacious and resilient bunch.

There is a general lack of knowledge about this topic in society, and unfortunately people tend to fear things which they don’t know about and don’t understand. Much of the work that needs to be done is familiarising the general population with our existence, and we extend our heartfelt thanks to Jim for raising awareness by so generously sharing his story on film. 

If you or someone you know is affected by these issues you can contact interconnecteduk.net for peer support and oiieurope.org for further resources.The Secret of Me airs on Channel 4 at 10pm on Tuesday (20 January).

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