Understanding what it means to be intersex

This article was written and reviewed by people with intersex variations.

Intersex people are born with physical features, such as genitals, chromosomes or genetic features, that don’t fit what doctors or mainstream society expect for either female or male bodies.

Many people think that ‘intersex’ is a word for a particular kind of body or a particular identity. This isn’t the case – intersex people have many different intersex variations and all kinds of bodies – all of them great.

When is someone assigned as intersex?

Just like everyone else, intersex people are assigned as female or male at birth based on their appearance. If doctors are unsure which sex to assign, they may perform tests. Intersex characteristics aren’t always obvious at birth; they can become apparent during childhood or puberty, or even later in life.

Intersex people choose many different words to describe themselves. These include naming specific traits and umbrella terms like 'being intersex', 'having an intersex variation or condition', or 'having an innate variation of sex characteristics'. Whatever someone’s intersex variation, it’s only a part of who they are.

What challenges do intersex people face?

Even though there are many intersex variations, intersex people share lots of common experiences. It can be difficult to look different, or to develop differently, from what mainstream society considers to be ‘normal’ and from people around you. It’s not always easy to take time off from school or work to deal with doctors’ appointments and examinations. Sometimes family and friends feel uncomfortable talking about it. Finding community with other people who share similar experiences, such as through intersex support groups, can make a huge difference to wellbeing.

Sometimes, young intersex people don’t get to choose what happens to their bodies

Parents and doctors often fear that children will be bullied or harmed if they look 'different'. Some doctors feel that children need surgery to enable them to grow up to be ‘normal’, or to prevent others singling them out and bullying them.

This can mean that intersex children who are healthy may undergo physical examinations and surgeries, and take hormones, to make their bodies look more like those of typical girls or boys.

Unfortunately, many people who have had surgeries and hormone treatments have been harmed by them, especially when they weren’t given a choice. All surgeries can lead to scarring, and to a loss of feeling in and around the affected body parts. It’s important that intersex people have a say in what happens to their bodies, especially when it comes to surgery, and this means waiting until they are able to make those choices.

While bullying can be a problem for intersex people, there’s no evidence that surgery prevents it. The reality is that people can live happily with all kinds of bodies if we treat each other with compassion and understanding. Most of us just need the love and support of our families and friends.

Intersex health and medical care

Some treatments or surgeries might be needed for the health of an intersex person. Many surgeries, especially those involving genitals, will need follow-up procedures over time, or ongoing care. The experience of having a doctor look at children’s genitals and body parts repeatedly as they grow up can be confronting and distressing. The experiences of ‘treating’ intersex people can also make you feel upset, angry or scared and you might need a little extra help to understand what’s happened and how to live with it.

It’s your body, so it’s okay to ask your doctors and parents for information on your medical history. You could ask them:

• about any treatments you’ve had and why you had them

• if they have any photographs of you when you were younger

• what information you need in order to take care of your body

• who you can talk to about your medical treatments and your health

• to put you in touch with other people with similar experiences.

It’s okay to take a family member or friend along when you see a doctor. You can also write down your questions before you see them, and make notes on what they tell you.

Other medical issues intersex people can experience

Some intersex people have other kinds of health issues that aren’t about their appearance and identities, such as infertility, psychosocial issues, or physical health issues associated with their variations. Sometimes it can feel like these less obvious issues are neglected. It’s important that you get the support you need to manage your overall health and wellbeing. Peer support groups and experienced counsellors can help you navigate any medical issues you might be experiencing.

Medical intervention and intersex human rights

Human rights organisations and intersex-led groups have called for legal protections and changes to medical practices so that parents are not asked to consent to medical interventions to change the physical appearance of their infant or child. Only the person having the medical treatment should be able to consent to it.

Important things to consider before medical intervention

If you are being asked to consent to treatment, you have a right to high-quality information from many different sources, and a right to all the support you need. Make sure you are given all the information you require to make a decision about your future needs. It’s okay and important to ask yourself questions like:

• What are the long-term outcomes?

• Is the treatment necessary?

• What are the alternatives, including no treatment?

Intersex-led groups can also connect you with others who have had treatments in the past.

Are intersex people considered part of the LGBTQIA+ community?

The 'I' in LGBTQIA+ is for intersex people. The sense of belonging to a broader community can support many intersex people, but it doesn’t always mean that intersex people are understood in those spaces. Just like other people, intersex people have diverse sexual orientations, which may include being attracted to the same gender, different genders, multiple genders, or experiencing attraction in unique and personal ways. Some intersex people will identify with the sex they were assigned at birth and others might be non-binary or transgender. It's important to understand that all these identities are valid and you can read more about the differences between gender, sex and sexuality in this guide.

Learn more and get support

There are some great resources available to learn more about the intersex community. The Darlington Statement by intersex organisations and independent advocates sets out the priorities and calls by the intersex human rights movement in Australia and New Zealand.

Intersex Human Rights Australia (IHRA) is a national not-for-profit organisation created by and for people born with variations of sex characteristics. They promote human rights and bodily autonomy with the goal of helping to create a society where intersex bodies are not stigmatised.

Intersex Peer Support Australia (IPSA, also called the AIS Support Group Australia) is an advocacy group providing peer support and information for people affected by androgen insensitivity syndrome and other intersex variations, and their families.

A Gender Agenda (AGA) in the ACT works with intersex and transgender people. They offer support for people with intersex variations.

Internationally, interACT in America and OII Europe in Europe also have great resources available.

For some good fiction reads, check out Golden Boy by Abigail Tarttelin and None of the Above by I. W. Gregorio. You can also watch the award-winning documentary Orchids: My Intersex Adventure.

Connect with others in the intersex community

While the intersex community is still often misunderstood, there is a growing intersex community in Australia. Meeting other intersex people with similar experiences can help you find support and feel better. Find out where the closest intersex communities, events or gatherings are near you.

It’s also important for the wellbeing of the intersex community that their lives and experiences are understood and listened to. Asking your colleagues or peers to make time to celebrate the intersex community on important dates, as well as during Pride Month, is a good way to show your allyship.

Intersex Awareness Day and Intersex Day of Solidarity

Intersex Awareness Day takes place on the 26 October and Intersex Day of Solidarity takes place on the 8 November every year. Joining any events in person or online to celebrate these days can help you connect with the intersex community and feel a deeper sense of solidarity. If you don’t identify as an intersex person, it’s still important to show up for the intersex community as an ally.