Intersex Human Rights Australia

The 2016 and 2021 censuses sought to capture data on people with innate variations of sex characteristics (intersex variations/differences of sex development), but they did so in ways that were harmful and that did not produce reliable, meaningful data. We have an opportunity to do better in the 2026 census.

First as president of IHRA, and later as a first employee, I have engaged with the ABS since 2014. This engagement has always had multiple aims:

• improving comprehension of the population of people with IVSCs
• attempting to prevent harm
• following directly on from these, work to develop better, more respectful data models

The ABS has tried to count some, often poorly defined populations within the LGBTI acronym before. Some of these attempts have included attempts to capture some LGBTI populations within a question on sex, in 2016 and in 2021.

In 2016 there was a misguided attempt to count “sex and gender diverse” people, defined in broad terms as people who identify as not female or male. The definition was overly vague and it wasn’t grounded in real-world life events (such as birth or gender affirmation), and did not produce meaningful data. Census responses led to a meaningless count of 1260 “persons reporting diverse sex/gender identity”, and this was reported in a hostile way in a range of media outlets.

In 2021, the ABS developed a census-specific concept of “non-binary sex” to be captured within a question on sex. This did not have a firm basis in an understanding of real-world processes of sex determination and classification, or life events.

At IHRA, we objected to the approach to recording sex in the 2021, and our concerns were validated by the findings. I was part of a peer review process for the ABS analysis of responses to the question on “non-binary sex”. The responses did not provide meaningful data.

Both the above approaches misrepresented people with innate variations of sex characteristics, and contribute to harmful misconceptions – by harm, I mean that they create situations where people with lived experience see representations of them that does not reflect their lives and needs, where people with lived experience mistakenly see intersex psychosocial support services as not for them but for people with a particular experience of gender or of identity. Similarly, these misrepresentations also harm engagement with policy-makers, where they mistakenly believe that intersex advocates want to talk with them about identity recognition or gender affirmation.

Intersex is really about sex characteristics, rather than sex or gender. The material reality is that people with innate variations of sex characteristics are observed/assigned female or male at birth, just like almost everyone else. Where alternative sex markers exist (for example, in the ACT) the evidence is that parents choose these for their children, in rare instances, on the basis of their values and not because of their child’s sex characteristics. Some people with IVSCs may understand themselves as having a non-binary gender, just like some people who don’t have IVSCs – and this should be respected. But asking women and men with intersex variations to self-describe as not women and men has complex and harmful consequences.

In collaboration with the ABS, myself and others sought over multiple years to consider case studies, develop test questions and analyse results, in order to try and better construct questions that can actually count people with innate variations of sex characteristics (other strands of work focus on other populations, including people of diverse sexual orientations and gender identities).

The 2020 ABS Standard on sex, gender, variations of sex characteristics and sexual orientation came out of this process. More recently, so has a Statement on health and medical research by the NHMRC.

The ABS Standard wasn’t used in the 2021 census because (a) it was too late, and (b) the census is a political process, in that the government of the day sets the questions.

It should have been a reasonably simple matter to incorporate the Standard into the 2021 census. The questions have all undergone testing, and the IVSC question is clearly the most respectful method so far developed of counting people with IVSCs.

Certainly, the IVSC question remains the least understood, and much of the reporting on the government’s decision reinforces this, talking about the IVSC question as a matter of sexuality or gender. This is really unfortunate, may harm future data collection, and represents a lost opportunity to provide structured advice and education on the questions.

I’ve already had one comment from an institution suggesting that existing questions (i.e. sex) can somehow be made more inclusive. As in previous attempts, this is likely to be harmful for people with innate variations of sex characteristics.

For more information on the conceptual and policy issues raised in this briefing, see:
Carpenter, Morgan. 2022. ‘Ambivalent Attention and Indeterminate Outcomes: Constructing Intersex and DSD in Australian Data’. University of Huddersfield. http://www.intersexnew.co.uk/wp-content/uploads/2023/04/Morgan-Carpenter-MNC-publication-version-aihw-paper.pdf.

References

Australian Bureau of Statistics. 2018. ‘Sex and Gender Diversity in the 2016 Census’. http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/by%20Subject/2071.0~2016~Main%20Features~Sex%20and%20Gender%20Diversity%20in%20the%202016%20Census~100.

Australian Bureau of Statistics. 2021. ‘Standard for Sex, Gender, Variations of Sex Characteristics and Sexual Orientation Variables, 2020’. https://www.abs.gov.au/statistics/standards/standard-sex-gender-variations-sex-characteristics-and-sexual-orientation-variables/latest-release

Australian Bureau of Statistics. 2022. ‘Analysis of Non-Binary Sex Responses’. 27 September 2022. https://www.abs.gov.au/articles/analysis-non-binary-sex-responses.

National Health and Medical Research Council. 2024. ‘Statement on Sex, Gender, Variations of Sex Characteristics and Sexual Orientation in Health and Medical Research’. https://www.nhmrc.gov.au/research-policy/gender-equity/statement-sex-and-gender-health-and-medical-research