Intersex for allies

Who are intersex people?

Intersex people are born with physical sex characteristics that do not fit medical norms for female or male bodies. We are a hugely diverse population, with at least 40 different underlying traits known to science. Intersex variations can become apparent at many different life stages, including prenatally through the use of genetic screening technologies, at birth and in early childhood, at puberty, and later in life – for example when trying to conceive a child.

Intersex people use many different terms to describe ourselves. Sometimes personal choices are intended to avoid discrimination, misconceptions and stigma.

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Darlington retreat

Members of Australian and Aotearoa/NZ intersex organisations, and independent advocates, in Darlington, Sydney, in March 2017. Read our joint Darlington Statement. Photo courtesy of Phoebe Hart.

How common are intersex people?

A low-range statistic for traits evident at birth is around 1 in 2,000 people (.05% of births) but a more likely figure may be closer to 1.7%.

What issues do intersex people face?

We do not share in common any gender identity or sexual orientation. Instead we share an experience of stigmatisation and discrimination due to our physical characteristics. This can include risks of elimination from the gene pool, and early so-called “normalising” surgeries and hormone treatment designed to make us appear more typically female or male.

We face body shaming and stigmatisation in education, healthcare, sport, work and other settings. Medical education is limited, and awareness of intersex people in biology and sex education at school is often absent.


Bonnie Hart, Morgan Carpenter, a parent and a clinician talk with SBS. Watch on SBS website. Medical interventions still continue on health infants and children, read follow-up article at SBS

Do intersex people have health issues?

Intersex people, like all people, have health issues. In a few situations, immediate medical attention is needed from birth. Some health issues, like fertility, may be associated with specific intersex variations, but being intersex is not a health issue in and of itself. Natural intersex bodies are most often healthy.

Current medical protocols promote interventions designed to make the bodies of intersex people more typically female or male. These often take place before we are able to personally consent, or with limited disclosure of long-term consequences. Rationales include ideas that medical interventions will “minimise family concern and distress” and “mitigate the risks of stigmatisation and gender-identity confusion”.

Such surgical interventions intrinsically focus on appearance, and not sensation or sexual function. These clinical practices lack firm evidence. Medicine has failed to self-regulate to end them. At a fundamental level, homophobia and stigma underpin mistreatment of people born with intersex variations.

Very many intersex people suffer lifelong physical and emotional effects from such interventions, and related shame and secrecy. The UN and many other human rights institutions recognise them as harmful practices and forms of violence and ill treatment; they must end.

What are DSDs?

In 2006, clinicians replaced the term intersex in medical settings with the term “disorders of sex development” or DSD. An immediately controversial act, this has been challenged as it entrenches a medical model that sees intersex bodies as intrinsically disordered. The terminology justifies forced and coercive medical interventions and so is linked to human rights violations. Intersex advocates and human rights institutions have called for clinical frameworks to be reviewed to ensure they meet human rights norms.

Some intersex people use this terminology, particularly when accessing healthcare or if taught by their parents or doctors. Other people may use diagnostic labels. But many people change service providers or avoid necessary healthcare because of this clinical language and the way they are treated.

What about the word hermaphrodite?

The term hermaphrodite has origins in Greek mythology. Historically, western law recognised hermaphrodites as either female or male depending on prevailing characteristics. Over time, the term has narrowed in meaning. In biology it has come to define an organism that combines both “male” and “female” functioning reproductive capacity. This makes the term misleading when applied to intersex people. The term also has a meaning in obsolete, pejorative clinical terminology.

Some intersex people find the term offensive while others reclaim it. It is best used only by people born with variations in sex characteristics.


Intersex people have all sorts of identities: folks from interACT in the US talk with Buzzfeed.

Are intersex people LGBT?

Some of us are LGBT, but many of us are not. We have the same range of identities as non-intersex people. Many of us are heterosexual and many of us are not. Most of us identify with sex assigned at birth and some of us do not. Some intersex people who have rejected the sex assigned to them at birth may identify as transgender or gender diverse, while others may see themselves as correcting a mistake made by doctors without their consent when they were children. Intersex is often mistakenly associated with gender and nonbinary gender identities. Anyone can have a nonbinary gender identity whether or not they are intersex.

Identity frameworks can be awkward in relation to intersex people. They can encourage inappropriate assumptions, and we are at risk of human rights violations before we have agency to freely express any identity. Even so, we share common issues with LGBT people.

We encourage respect for our diversity as a population, including respect for our sex assignments, sexual orientations and gender identities. LGBT and LGBTI are not synonyms, and we encourage the deliberate use of specific terms appropriate to each situation.


Insight on SBS talked about the medicalisation of intersex people in episode 31, November 2017.

What do intersex advocates want?

We seek access to the same rights as endosex (non-intersex) people: bodily autonomy, the right to determine what happens to our bodies ourselves; the right to a life without stigma and discrimination; and the right to a life free from shame and secrecy.

The demands of the intersex movement in Australia and Aotearoa/New Zealand are set out in the Darlington Statement: darlington.org.au/statement


A video by Human Rights Watch in the US, that accompanied a major report published in 2017.

What is IHRA?

Intersex Human Rights Australia is a charitable company, registered in 2010. We were formerly known as OII Australia. We are run by volunteers and (since the end of 2016) two part-time staff funded by philanthropy. We engage in systemic advocacy, community-building and education. Cumulatively, we have many decades of experience in human rights advocacy. We bring together qualifications and expertise in law, bioethics, healthcare, youth work and public administration.

Find out more

Framework documents

Non-fiction

Fiction

Documentary films

Organisations

Being an ally

  • Be clear in your language and frame of reference. Intersex status is distinct from sex, sexual orientation and gender identity, and not contained within LGBT.
  • Affirm the 2017 Darlington Statement by Australian and Aotearoa/NZ intersex organisations and individuals.

Our bodies ourselves

  • Many medical studies of people with intersex variations explicitly identify fears of stigma, gender identity issues and non-heterosexual behaviours as reasons for medical treatment.
  • Ally with our call to prohibit harmful practices on infants, children and adolescents born with variations of sex characteristics.
  • Challenge body shaming and the elimination of intersex traits via genetic screening technologies.
  • Support intersex inclusion in health and human rights initiatives.

Combat discrimination

  • Intersex people face discrimination in healthcare, education, employment, and other services, often due to physical characteristics, developmental issues, or assumptions about our identities.
  • Include measures to combat stigma in healthcare, education, employment, diversity and inclusion, and anti-bullying policies.

Thoughtful inclusion in surveys and forms

  • Make surveys relevant to our concerns and lived experience.
  • Recognise the diversity of intersex people.
  • Intersex and non-intersex people alike benefit from F, M, X and multiple sex/gender options.
  • Find more information at ihra.org.au/forms/

Nothing about us without us

  • Put people with intersex variations and intersex-led organisations front and centre when talking about intersex.

Download


Bonnie talks about being intersex for QLife Australia

More information


Tatenda Ngwaru talks about growing up intersex in Zimbabwe, and seeking asylum in the US.

Acknowledgements

IHRA acknowledges the tradition custodians of the land.

This document has antecedents in Intervisibility by OII Europe; Brief Guidelines for Intersex Allies by Hida Viloria and Claudia Astorino; a 2008 FAQ by OII; and a 2003 FAQ and Introduction to Intersex Activism A Guide for Allies by the Portland Intersex Initiative.


Meeting other people, and understanding your body, make a huge difference. This video is by Young Intersex, filmed in Brussels in 2017.

 
This page is periodically updated.