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.
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.
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, and some health issues 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.
Tony Briffa writes on “Disorders of sex development”.
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.
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.
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
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 philamthropy. 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
- Fixing Sex by Katrina Karkazis
- The Legal Status of Intersex Persons by Jens Sherpe, Anatol Dutta and Tobias Helms (eds)
- Critical Intersex by Morgan Holmes (ed)
- Raising Rose: Our Story of Parenting an Intersex Child by Eric Lohman, Stephani Lohman and Georgiann Davis
- Intersex Human Rights Australia
- AIS Support Group Australia
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.
- 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
- Recognise the diversity of intersex people by making surveys relevant to our concerns and lived experience.
- 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.
- Defining intersex: Australian and international definitions.
- Demographic data.
- Style guide, for journalists and writers.
- Key intersex community priorities – concluding statement of the third international intersex forum.
- Including intersex on forms, and in research and surveys.
- Statement on the Senate report ‘Involuntary or coerced sterilisation of intersex people in Australia’.
- On intersectionalities with gay and lesbian people, with trans experiences and with disability.
- All FAQs listed – a curated list of key articles on our website.
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 of OII-USA; a 2008 FAQ by OII; and a 2003 FAQ and Introduction to Intersex Activism A Guide for Allies by the Portland Intersex Initiative.
Information for parents introduces intersex for parents. We hope that our page for parents will be helpful to you if you have a new baby or if you’re planning a pregnancy, or you’ve recently discovered that your child has an intersex trait, sometimes called a “DSD” or “disorder of sex development“. Available to read online.
- Bodily diversity is natural
- Announcing a birth
- Choosing a sex
- My kid has had surgery, but…
- What kinds of diagnoses are there?
- The future
Employers’ guide to intersex inclusion developed in collaboration between Intersex Human Rights Australia (formerly OII Australia) and Pride in Diversity in 2014. Written by Morgan Carpenter and Dawn Hough, the guide is kindly sponsored by IBM. A world-first, the guide presents information about intersex for employers, including:
- An introduction to intersex.
- Intersex bodies, identities, and inclusive language.
- Disclosure, medical issues in the workplace, and travel.
- Protections related to “intersex status” in Commonwealth law.
- Information for diversity and inclusion professionals.
- Top 10 ways to be an intersex ally.
- Information for parents of intersex children.
- Additional information and a glossary of terms.
Making your service intersex-friendly is a short guide to help services build intersex-inclusive practice. It helps organisations and businesses to better understand intersex, and respond to community needs. Businesses and institutions will find ways of making services inclusive and respectful, including in data collection. The following issues are addressed:
- Who are intersex people, and what do intersex clients need?
- Data collection on intersex, sexual orientation and gender.
- An example intake form.
- Anti-discrimination law.
- Disclosure and speaking up.
- Inclusive language.
- Body diversity issues.
- What health issues intersex people face.