On 5 June, Interconnect Health team members were delighted to participate in a lecture and panel discussion about Innate Variations of Sex Characteristics (IVSCs) at UNSW Sydney, alongside CoPQTI and InterAction for Health and Human Rights.
The event featured contributions from Interconnect Health Chief Investigators Morgan Carpenter, Bridget Haire, and Bonnie Hart, with discussions unpacking how innate variations of sex characteristics (IVSC) are understood, governed, and lived across different contexts – and providing advice on how to practice meaningful IVSC inclusivity.
Panel discussion recording
Key takeaways
Participants gave their informed personal perspectives about the health and wellbeing needs of the population, and research methods.
- Big issues facing people with IVSCs that impact their health, autonomy and social participation:
- A lack of resources allocated to community-controlled organisations.
- Unsafe medical settings, where infants with IVSCs are still undergoing medical interventions that can safely be deferred.
- Parental distress as a clinical rationale to perform surgery prior to ability to consent.
- Continued medical interventions that lack a social license, as demonstrated by the widespread political, cultural and social support for the IVSC legislation in the ACT and VIC.
- Being utilised as a political football in debates about the meaning of sex and gender.
- Externalised and internalised stigma related to being different from what society expects.
- The need to increase awareness, visibility and inclusion of the population.
- What’s important to know when conducting research with the population:
- Being mindful of significant trauma that many people with IVSCs have experiences have in clinical spaces – and that these experiences perpetuate shame, secrecy and a lack of understanding.
- People with IVSCs often have to piece together their medical history.
- Inclusion of the population must be meaningful, and not conflate the populate with trans or queer, or include IVSCs in a tokenistic manner – this can deter the population from participating in research initiatives as they so often are not for or about them.
- Clinicians to date haven’t captured the lived experience of people with IVSCs in their research data – people’s stories matter, both in research and in clinical spaces.
- Ongoing impacts of alienation from care and being objectified as a ‘body to study’ results in many adults with IVSCs being medically avoidant and seeing medical facilities as sites of trauma and violence.
- More funding is required to help create and sustain services that can help people with IVSCs to create healthy, happy lives.
- It’s vital to find ways of talking about the language and ensuring people understand what IVSC means.
- What can we do to further visibilise concerns that people with IVSCs face?
- Respect the diversity that exists of people with IVSCs, the pluralism in individual values and preferences of how they should be and should have been treated, and maximise the possibility for people to have agency over their lives in how they’re treated in medicine, law, and society.
- Often IVSCs are a crisis of normativity, not medical. Psychosocial and peer support should be available to help people deal with the types of normative things they might feel.
- The importance of building community:
- It is common for a person with IVSCs to develop self limiting thoughts about who they are and what they can be based on interactions with people in their lives. These often impact relationships and what they think they can do with their lives.
- Being in a space where you don’t have to do any education creates a ‘normal’ that may not have been available in their lives – this can be transformative and liberating.
- With such a diverse population, it is vital to have community controlled organisations, spaces where people can speak across different variations, and to hear stories represented from different advocacy points of view.
- Australia policy and legal context:
- The ABS developed the ‘2020 standard‘ as a way of standardising data collection for gender, sex, sexuality, and for people with IVSCs.
- The development of this standard has not extended to adding new census questions related to the IVSC population, with exclusion justified based on data indicating that people would not understand the question.
- Government has a role in constructing language around populations, and has a long history of constructions of intersex that are harmful, inappropriate, and alienating – the misunderstanding has in a sense been manufactured by government and other institutions.
- On intersex joy:
- Meeting other people who have had this similar experience of incomprehension, harm and stigma is transformative and beautiful.
- Community and connection are joy, with relationships that form in those spaces often being long-lasting.
- Seeing the amazing work done by community controlled organisations, and understanding the breadth of what they could do with resources to grow.
- Self acceptance, including fundamental concepts like ‘all bodies are beautiful and deserving of respect without needing to be changed’, and recovering the sense of beauty and ownership of being in a body that’s different.
- Sexual enjoyment, which can often be a life’s work for people, and finding other ways to connect with people if sexual sensitivity has changed.
Thanks to UNSW Sydney and its Community of Practice for organising and hosting this event!