Intersex 101: What does ‘intersex’ mean?

January 7, 2020

Image by Jamie Aldridge

Jamie Aldridge explores why intersex people are forced into ‘boy’ and ‘girl’ boxes, both medically and socially

Last month, Angela and I took part in Educate and Celebrate‘s Great Rainbow Bake Off. The theme of the competition was ‘change starts with us’.

We chose to base our cake design on the intersex flag. We wanted to raise awareness of a shocking medical practice, to force intersex people to undergo surgery at birth to align their bodies with society’s definition of ‘normal’.

Although we’re not affected by this issue personally, we felt compelled to show our support for intersex people and highlight the barbaric methods still used today.

It is important to show solidarity with intersex people in an age where LGBT people are gaining more rights and legal recognition (which affects me personally), while intersex people aren’t.

What does the word ‘intersex’ mean?
If someone is intersex, it means their sex development is different to most other people’s. Their body doesn’t fit with society’s typical definition of ‘male’ or ‘female’.

It’s sometimes called an ‘intersex condition’, and is caused by differences in someone’s genes, which causes a diverse range of differences in a person’s development.

Intersex conditions can affect a person’s:

  • chromosomes; they might have XX (usual female) chromosomes or XY (usual male) chromosomes, an extra X or Y chromosome, or a mix of cells with XX and XY chromosomes
  • hormones; they might have higher or lower levels of oestrogen or testosterone than expected
  • external genitalia; they may or may not have a vulva, penis or testicles (or these may be over- or under-developed)
  • internal reproductive organs; they may or may not have a uterus, ovaries, cervix or vagina (or these may be over- or under-developed)

Some intersex people need medical treatment, such as hormone therapy to replace the hormones their body doesn’t make naturally. This is because some hormones (such as cortisol, oestrogen or testosterone) are important for bone health and fertility. However, this does not mean that being intersex is something that needs to be ‘fixed’ or ‘corrected’.

What issues do intersex people face?
There are a number of issues faced by intersex people, such as:

  • Invasive forced surgery to ‘fix’ their external appearance, often requiring several follow-up surgeries as the person ages. Cosmetic (not medically necessary) genital surgery is thought to be performed on 4-5 babies each day
  • Being forced to live in one gender role (a doctor choosing their gender for them)
  • Lack of awareness about intersex conditions, among doctors and the general population
  • Higher incidence of mental health conditions due to discrimination and prejudice
  • Negative stereotypes or slurs e.g. ‘hermaphrodite’
  • Being excluded from some LGBT spaces
  • Societal prejudice against anyone with so-called ‘abnormal’ sex traits or characteristics
  • Parents of intersex children are pressured to ‘fix’ or ‘normalise’ their children with surgeries and socialise (bring up) their child as a boy or a girl
  • Under the concealment model of care, doctors coerced parents to keep their child’s intersex status a secret. As a result, many people didn’t find out they’re intersex until adulthood

If an intersex person’s friends, family and wider community understand more about intersex conditions, they are less likely to face these issues.

How common is it to be intersex?
The most thorough research on intersex traits estimates that 1.7% of the population are intersex. This is about the same as the number of red-headed people (1-2%). So, being intersex really isn’t as rare as most people think – it’s just not talked about enough.

Do all intersex people call themselves ‘intersex’?
Different people use different terms to describe themselves. For example, a gay woman could describe herself as a lesbian, a lesbian trans woman, or simply queer. Some phrases used to describe being intersex (or to describe the physical condition behind it) include:

  • [I am] intersex
  • [I am an] intersex person
  • [I have] intersex traits
  • Differences of Sex Development
  • Disorders of Sex Development
  • Diverse Sex Development
  • Variations in Sex Characteristics

A good rule of thumb is to use the term or word that the person uses to describe themselves. If you’re unsure what they like to be called, ask them (in private).

How can I tell if someone is intersex?
Put simply, you can’t. It isn’t always obvious on the outside that a person has an intersex condition. Some people only realise they are intersex when they go to the doctor after having fertility problems, or if they are late to go through puberty as a teenager.

Some people go their entire lives without ever knowing they’re intersex, and their intersex status is only discovered after they pass away (for example, if they have an autopsy after death.

What can allies do to support intersex people?
The best things allies can do to support intersex people, is to listen to intersex people themselves. Follow intersex activists such as Valentino Vecchietti and Pidgeon Pagonis. Or read news stories about intersex people here.

You could follow or get involved with LGBT and equality groups such as Voices4London and Amnesty International.

You could also read the Vienna Statement, a declaration put together by leading intersex charities across the world, or this toolkit for allies.

To find out more about the intersex community, see the webpage for the UK branch of the International Intersex Organisation, Intersex UK‘s Facebook page, or the NHS Choices webpage for Differences in Sex Development.