This guide offers practical advice on using respectful language, developing inclusive policies, and improving healthcare and services for people with innate variations of sex characteristics.
By making thoughtful, informed choices in language and policy development, we can better recognise, support and include people with innate variations of sex characteristics – also known as intersex.
Recognise the diversity of people with innate variations of sex characteristics
- People with innate variations of sex characteristics are born with physical, genetic, or hormonal characteristics that differ from medical and social norms of female and male bodies.
- Innate variations of sex characteristics or intersex is an umbrella term for more than 40 known variations, which have always been part of the natural diversity of human biology.
- Innate variations of sex characteristics may be determined at birth, during childhood or puberty, or later in life when issues related to hormones, fertility or sexual health may emerge.
- Some people may never receive a formal diagnosis due to a lack of medical information or because their variation does not cause noticeable health issues.
- Intersex is about sex characteristics, not gender identity or sexuality. People with Innate variations of sex characteristics may or may not identify as LGBTIQ+ and come from diverse cultural, religious and social backgrounds that impact their experience of health services.
Avoid framing intersex as a gender identity or sexuality
- Innate variations of sex characteristics relate to a person's body – not their gender identity or sexual orientation.
- The intersex population includes infants, children and other individuals who do not have agency to express any identity.
- While some intersex people identify as LGBT+, automatically grouping intersex within the LGBT+ community can be misleading and inadvertently exclude some intersex people.
Using the LGBTIQ+ acronym accurately
- Intersex is about sex characteristics and bodily diversity, distinct from sex, gender identity and sexual orientation.
- Include the “I" in the acronym only when intersex-specific issues are addressed. Many policies and resources use LGBTIQ+ broadly but fail to reflect the specific health needs of people with intersex variations.
- Take care when representing data. Use the “I" in research and reports only when intersex people are represented with statistically valid sample sizes.
Respectful and inclusive language
- Language relating to sex characteristics has evolved. Use terms like “intersex" or “innate variations of sex characteristics" that reflect respect for biological diversity.
- Avoid outdated or pathologising terms such as “hermaphrodite", “birth/congenital defect" or “disorders of sex development".
- Respect individual preferences. Many people with innate variations of sex characteristics do not connect with the term “intersex" and may prefer to refer to their specific diagnosis (e.g. Androgen Insensitivity Syndrome, Congenital Adrenal Hyperplasia).
- For further guidance on inclusive language in professional settings, see the Including Intersex resource developed by Sexual Health and Family Planning ACT and A Gender Agenda.
Developing inclusive policies and resources
- Many LGBTIQ+ policies and resources include intersex people without actually addressing their unique healthcare needs.
- Genuine inclusion requires consultation, collaboration and tailored policies with substantive, actionable responses that address the health needs of people with innate variations of sex characteristics.
- Work with intersex-led organisations such as InterAction for Health and Human Rights and use existing resources before requesting further input, as many advocacy groups have limited capacity.
Thoughtful data collection
Protecting privacy and confidentiality
- Sex characteristics and medical histories are deeply personal.
- Always seek informed consent before discussing or documenting a person's intersex variation.
- Use de-identified data wherever possible.
- Clearly communicate how personal data will be used, stored and shared in research and policy development.
Resources and further reading
- NSW LGBTIQ+ Health Strategy outlines NSW Health's commitment to responding to the healthcare needs of intersex people.
- InterAction for Health and Human Rights is the national body for people with intersex variations and a valuable source of information about health care needs, data collection and other resources.
- InterLink offers peers support, counselling, and mental health services for people with innate variations of sex characteristics and their families across Australia.
- Darlington Statement set outs the priorities of the intersex human rights movement in Australia and Aotearoa/New Zealand.
- A Gender Agenda supports the goals and needs of the intersex, transgender, and gender diverse communities of the ACT and surrounding region through education, advocacy, peer support and professional networks.
- Sexual Health and Family Planning ACT has developed a comprehensive guide on Including Intersex in educational settings.