IHRA is currently engaged on a significant project to provide policy advice and develop resources for the Victorian Department of Health. The first steps in the resources component of this project have been to review existing resources, and plan new and modified resources.
This review has been carried out in June 2021 by Morgan Carpenter. It was presented to stakeholders on 30 June 2021, with those stakeholders having an opportunity to provide feedback by 14 July. The following summary is extracted from the review report, and citations can be found in that report.
Summary of key issues
Key issues arising in the resources review
The review identifies pervasive mixed messaging by health and community organisations, in relation to both medical practices affecting people with intersex variations, and the characteristics of the population. These illustrate a contradiction discussed in a book chapter (Carpenter 2018a) and peer-reviewed article (Carpenter 2018b), that different language is associated with radically different values, beliefs and ideas about the nature of the subject population. In particular, people with intersex variations are simultaneously depicted as disordered female and males, and in need of “fixing”, while at the same time are depicted as an other sex category entirely, or even a sexuality or gender identity. The messaging frames people with intersex variations as queer, as disordered, as child subjects for treatment, and as having our health needs met by adult, LGBT-focused services.
Clinical framings presuppose a need for medical intervention, direct parents to inappropriate resources, and omit consideration of established human rights concerns about medical interventions. Diagnosis-specific community/clinical organisations frequently promote normative ideas about children’s future gender identities that disregard the diversity of the population, and promote a need for medical interventions aligned with those identities to make bodies more “normal”.
LGBT(I)QA+ community framings disregard and disrespect the diversity of the population of people with intersex variations, and have lacking or limited awareness of rights to autonomy, self-determination, and bodily integrity. Only IPSA and IHRA demonstrably accept people with a diversity of identities. MRKH Australia stands out for its focus on mental health.
Some resources contain material that may have been partially updated, or with information cut and pasted from different sources; some of this material is internally inconsistent, such as an inclusive practice guide by the Victorian public service.
Interactions between different spaces are evident, for example, AXYS states that the term intersex does not apply to people with sex chromosome variations, and it is certainly the case that the most widespread representations of what it means to be intersex, on the sites of the most highly resourced and LGBT(I)QA+-focused community organisations do not in any way demonstrate comprehension or understanding of people with sex chromosome variations. However, negative evaluations of nomenclature by diagnosis-specific groups rarely consider the work of intersex-specific organisations, and can appear to regard people with their specific diagnosis who have LGBT identities as improbable, irrelevant, or even unacceptable.
At the same time, clinicians may represent that their patients (or more often parents) distance themselves from the word intersex. On the one hand, this could be regarded as a consequence of misuse of the term but, on the other hand, is also a reflection of clinical approaches to the education of parents and children – including the use of terminology – in ways that are designed to promote compliance (Timmermans et al. 2018; Hegarty et al. 2020; O’Connor 2016; Carpenter 2018a).
Many clinical resources describe surgery in terms that present it as a neutral option, despite decades of contestation, and nearly a decade of criticism by human rights institutions including as forms of experimentation, harmful practices, and inhuman or degrading treatment (for a summary of UN Treaty Body recommendations to Australia, see Intersex Human Rights Australia 2019). Some other resources such as those by the Victorian government, omit material about contested medical practices, failing to address these abuses, failing to prepare parents, and so tacitly accept the continuation of such practices.
In some cases, multiple different resources exist on the same topic, even on the Victorian government website. These typically differ in significant respects, such as the referral destinations given, or even discussion of surgical treatment. It seems likely that different stakeholders might pick and choose between these according to their interests, while some stakeholders might believe that certain resources are shared more widely than they may be.
A note on changing nomenclature
It should be noted that changes to nomenclature from “intersex variations” in public-facing resources, if proposed, would need careful attention. Proponents of changes to nomenclature need to consider that the existence of intersex variations serves particular purposes to third parties, and changes to nomenclature that do not address those motivations cannot be expected to change the way that bodies with intersex variations are discussed.
Koyama and Weasel twenty years ago found that discussion of intersex serves to underpin discussions about social construction of gender and sex, while ideas about intersex as the “other” are underpinned by concepts that equate sex with biological sex characteristics (Victorian Government 2019). The introduction of “DSD” nomenclature has not prevented such discourses. Specific traits such as XXY chromosomes or CAH can serve as examples of a third sex or the social construction of gender and sex (Colangelo 2017).
Stakeholders are often adept at picking up and citing more up-to-date, careful and precise definitions, but far less adept at addressing issues facing people with intersex variations. LGBT health stakeholders, including those with significant roles in professional healthcare associations, may construct intersex as a sex or a gender identity, and these stakeholders may even define “DSD” in a way that includes “transsexualism” in order to access medical treatment (National Foundation for Australian Women and The University of Melbourne 2016; Wallbank 2015; Carpenter 2018a). Calls for respectful, non-tokenistic inclusion in “LGBTI” settings can be perceived as demands for exclusion or special treatment (Carpenter 2021).
For clinical stakeholders, use of specific diagnostic terms and “disorders” or “differences of sex development” without reference (or with negative reference) to alternative social models of understanding intersex variations can be considered part of a model of practice designed to educate families and promote compliance with treatment (Carpenter 2021; Hutson et al. 2020). Like LGBT health stakeholders, clinical stakeholders can also frame “DSDs” in ways that contest the identities and sexes of people with intersex variations. For example, “DSD women” are presented as illustrating a “new realm of gender fluidity” in a sports consensus statement co-authored by the director of the Murdoch Children’s Research Institute, Melbourne (Hamilton et al. 2021, 5). Clinical guidelines in sport also promote the idea that women with DSDs who refuse medical intervention should compete in a third sex category of sport (Karkazis and Carpenter 2018).
A better way forward might be for resources to continue to utilise commonly-understood terms (i.e. “intersex variations”), but to also respectfully recognise a range of terms used by community members. At the same time, funders should insist that service providers respect the diversity of the population of people with intersex variations, including in relation to age across the lifespan, and in relation to sex, gender, sexual orientation and gender identity. Funders should insist that stakeholders meaningfully address and service the healthcare and related human rights concerns of the communities they claim to service or represent, including those concerns expressed by the communities of people with intersex variations. Inclusion should be accompanied by representation in senior staffing and/or board positions. This has implications for service funders and public institutions, in addition to service providers.