The Federal Senate has established an Inquiry into universal access to reproductive healthcare. The Inquiry was called because the government has acknowledged we have a crisis of sexual and reproductive health access.
On Wednesday 9 November 2022, we hosted an online forum to explore what the inquiry terms mean, how it applies in practice and provided a submission template which you can download here to assist people in writing their own.
Morgan Carpenter gave the following speech at our webinar, which you can watch here.
People with innate variations of sex characteristics use a variety of terms to describe ourselves including word intersex, clinical diagnostic terms, and terms like ‘differences of sex development’.
We’re a diverse population with diverse identities and self-understandings, which problematises popular misconceptions such as the idea that we all share an identity.
Indeed, misconceptions and stigma play a significant role in determining the way we are treated — socially and medically — including in relation to sexual and reproductive health. So what are these issues:
- Our reproductive capacity is frequently disregarded and eliminated in medical interventions intended to make our appearance and function fit medical norms for female or male bodies.
- These often take place before we have age and agency to express our own values and preferences
- Our access to reproductive services is impeded
- Our lives are frequently not seen as worth living
I encourage you to make submissions that support our right to bodily autonomy.
For some people, including me, we’ve never been understood to be fertile.
For other people, reproductive tissues are routinely removed, often on the basis of gender stereotypes and without clear evidence.
In 2016, a Family Court judge adjudicated a case that is remarkable not for its decision, but for the way it made clinical reasoning transparent outside of medicine.
The judge described how a pre-school child born in 2010 had been already subjected to surgeries that had “enhanced the appearance of her female genitalia”.
The child had 17 beta hydroxysteroid dehydrogenase 3 deficiency — or 17 beta HSD3 — what the judge termed a ‘sexual development disorder’.
The case was taken to authorise her sterilisation, which the judge approved.
In justifying this, the judge relied on a medical paper that called for the gonads of children with this trait to be monitored, not removed.
The judge relied on gender stereotypes about clothing, toys and colours to support the sterilisation — indeed, analysis of literature from the World Health Organization and elsewhere shows that sterilisation of children with this trait is now associated with female sex assignment and not male assignment.
A clinical submission to the Senate in 2013 suggested that children with a different trait, complete androgen insensitivity syndrome, were no longer subjected to early sterilisations because historical claims about high rates of gonadal cancer were then understood to be wrong.
But evidence from a 2019 conference presentation by a paediatric and adolescent gynaecology clinic shows that all children with these and similar traits seen by that clinic had been subject to sterilising surgeries.
Many — possibly all children diagnosed early — were also subject to early genital surgeries.
The future capacities of children with intersex variations to make decisions in line with their own values, interests and preferences for genital appearance and function are being systematically disregarded and impaired.
Additionally, people with sex chromosome variations can face a range of health issues, including impaired fertility.
While access to reproductive services has been improved for women, and men with viable sperm in ejaculate, access to surgical procedures to retrieve viable sperm remains inaccessible to many men.
I want to talk about genetic selection.
Genetic analysis that has provided the evidence to reduce gonadal tumour risk rates associated with partial androgen insensitivity also remark on the value of genetic research into the origin of intersex traits for “reproductive planning of the family”.
The same World Health Organization information that calls for sterilisation of female-assigned children with 17-beta HSD also remarks on the availability of prenatal diagnosis for kindred of affected patients.
Data on terminations from a range of countries shows high rates of terminations of foetuses with sex chromosome variations.
This situation is disproportionate to the impact of such traits on people’s lives— it’s at odds with evidence showing that people with innate variations of sex characteristics are capable of living happy and fulfilling lives.
So societal issues such as body shaming, and ideas about how our bodies should look and function, play a key role in determining how we are treated, and even if we are born in the first place.
Just as sex selection is a cause for concern for women, so selection on the basis of sex characteristics is a concern for the intersex movement.
In general, infertility is a huge problem for our community.
To a significant degree, it is a problem for many of us because of the way we have been treated by medicine.
Whether infertility or impaired fertility are iatrogenic or inherent, all of us deserve the right to access reproductive and sexual services, free of shame and stigma.
We need support for specific attention to our health and human rights concerns.
Our call for action and a 2021 Australian Human Rights Commission report provide recommendations for better practice, including legal protections, resourcing for independent psychosocial support, rights-affirming guidelines, education to address stigma, and community-led research.
At Intersex Human Rights Australia we’re still drafting our submission to the Senate inquiry, but this presentation and our submission use much of the data that we presented in a current submission to the UN Committee against Torture, available at: https://ihra.org.au/40056/submission-cat-2022/
Much of the source data for my words today can be found in a paper I wrote last year for the governmental Australian Institute of Health and Welfare, available at: https://morgancarpenter.com/intersex-dsd-australian-data/
Find out more about this legal case in the paper for the AIHW mentioned before. The case is likely instrumental in establishing a national inquiry by the Australian Human Rights Commission that reported last year: https://humanrights.gov.au/intersex-report-2021
I wrote about more about the case and the human rights it engages in a 2018 paper in Health and Human Rights Journal: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6293350/
Melinda Jones has also written on these issues: Jones, Melinda. 2017. ‘Intersex Genital Mutilation — A Western Version of FGM’. The International Journal of Children’s Rights 25 (2): 396–411. doi:10.1163/15718182–02502008.
Intersex Human Rights Australia publishes a set of briefing papers, including one on genetics at: https://ihra.org.au/genetics/
The Australian Human Rights Commission report is available at: https://humanrights.gov.au/intersex-report-2021
Intersex Human Rights Australia has a call for action for the federal government, available at: https://ihra.org.au/39860/call-for-action-2022/
Morgan Carpenter is an intersex man, bioethicist, executive director of Intersex Human Rights Australia, and creator of the intersex flag.
He was a drafting committee member of the Yogyakarta Principles plus 10 on the application of international human rights law in relation to sexual orientation, gender identity, gender expression and sex characteristics, and a participant in the first UN expert meeting on ending human rights violations against intersex persons in 2015.
His current and recent roles include contract work for the World Health Organization, the government of the Australian Capital Territory, and the Australian Institute of Health and Welfare, and membership of reference or advisory groups for the Australian Human Rights Commission, the Australian Bureau of Statistics, and New South Wales Health.