On Wednesday 22 March, the Chief Minister of the Australian Capital Territory will introduce legislation into the Legislative Assembly to protect the rights of people with innate variations of sex characteristics in medical settings. This is an Australian first.
This legislation is very welcome, and we hope that it will receive bipartisan approval. The bill is the outcome of many years of work, on issues that have long been neglected and we warmly commend the ACT government for taking on this work and seeing it through. IHRA was a key proponent of these reforms, and we have been joined by including other community and human rights organisations like Intersex Peer Support Australia, A Gender Agenda and Equality Australia. The process has also involved clinicians, including mental health practitioners who are supportive of reform, and others who are wedded to the idea that children’s bodies need to change to suit social norms.
How did we get here?
IHRA, our staff and directors have worked over many years (and even decades) in an attempt to reform medical practice. Despite rhetoric of change, medical practice has been resistant to reform. Self regulation has failed, and some medical practices still violate human rights norms. We have worked with individuals, parents, other intersex-led and community organisations, clinicians and their institutions, human rights institutions, and government bodies. IHRA has advocated for such reforms since we were established in 2010.
Key steps leading to this reform include community development, research and advocacy work:
- 2013 cross-party recommendations for reform by the Senate Community Affairs References committee, from an inquiry on ending involuntary or coerced sterilisation.
- Appointment of Morgan Carpenter and Tony Briffa as our first staff in December 2016, funded by foreign philanthropy.
- Development of the Darlington Statement, a common community platform with shared goals across Australia and Aotearoa New Zealand, in 2017. This set out demands for a legal prohibition of harmful practices, together with human rights oversight and psychosocial support.
- Participation in human rights standards identification in the 2017 Yogyakarta Principles plus 10 on the application of international human rights law in relation to sex characteristics and other attributes.
- Commitment to these reforms by the ACT Chief Minister in response to a formal request from IHRA, IPSA and AGA in 2018.
- A formal contract from the ACT government for Morgan Carpenter to investigate the published literature regarding key issues in Australia.
- The 2021 Australian Human Rights Commission inquiry and report on ensuring the health and human rights of people born with variations of sex characteristics.
- Collaboration with medical and health organisations on policy and position statement development; collaboration in the elaboration of legal advice with community and human rights institutions and organisations.
The ACT government has published discussion and options papers, a draft bill, and listening reports on feedback received.
What do the reforms do?
A key part of the reform will be to establish an oversight body, but it will also promote supported decision-making, and legislation will be accompanied by significant investment in psychological and psychosocial support for individuals and families. We won the argument for legislation, in part based on our analysis of the limited evidence for, and limited impact of, clinical guidelines. We won arguments for transparency and accountability, including arguments that oversight needed to be carefully constructed to avoid stacking and non-implementation. These issues will need constant vigilance.
We won the argument that legislation needed to be accompanied by significant penalties, and we will be watching to make sure there are no loopholes allowing clinicians or parents to sidestep these.
But we lost the argument that protections should be available for everyone. This resulted in the government conducting a diagnosis-by-diagnosis analysis to determine inclusion or exclusion from protections. And this means that we expect most forms of hypospadias and all cases of bladder exstrophy to be formally excluded. These exclusions are listed in regulation, which is easier to change (and this impacts traits that might in future be excluded also). We understand the pressures that the government has faced in developing this bill, but we also find this narrow scope of protections distressing, as it means that some children who need protecting will not be protected.
What happens next?
We hope the bill will receive bipartisan support in the Legislative Assembly.
We are keen to work with the ACT government to ensure effective implementation. There will be an early review of the legislation and we will be doing all we can to improve the scope and effectiveness of the reforms.
Drawing on the experience of our staff in delivering psychosocial support, we will be advocating for community-based provision of professional psychosocial support services, and a holistic attention to the health and wellbeing needs of children with innate variations of sex characteristics and their families.
The ACT government has issued a challenge to other jurisdictions to implement similar reforms, and offered to provide their expertise. We’re grateful for this, and we hope that other jurisdictions will follow, to ensure national consistency.
An ACT parent (anonymous so as not to impact child care) says:
As a parent of an intersex child I’m overjoyed to see this legislation come before the legislative assembly and look forward to celebrating when it’s passed. Had this legislation been in place when our child was born we would have had legal protection for our child guided by evidence based medicine. Instead we had undue pressure from medical professionals to do a cosmetic surgery on a child who was just learning to talk. With no evidence provided on any medical basis on which we should agree to the surgery, we decided against it.
This legislation will now provide clarity around what may be medically necessary and what’s not and so can be delayed until the child can give their own informed consent.
All comments below are by people with personal lived experience of innate variations of sex characteristics.
Morgan Carpenter is a bioethicist and executive director of Intersex Human Rights Australia. He says:
Intersex Human Rights Australia was founded to promote the health and human rights of people with innate variations of sex characteristics. We’re internationally recognised as leaders in community development work, research and advocacy, and we’ve been proud to work with the ACT government on this innovative law reform and psychosocial support project since 2018. So much of our work, and of my work as a cofounder of IHRA, has led to this moment and what happens next. Thank you to the Chief Minister and his government and staff for their extraordinary careful and thorough work.
These reforms promise to ensure that medical interventions on many people with innate variations of sex characteristics meet human rights norms. They will enable individuals, to the maximum extent possible, to make their own decisions about their own bodies – in their own time, and in line with their own values and principles. We hope that other jurisdictions will take up the challenge, implementing the same reforms to ensure maximum benefit and national consistency.
Bonnie Hart is a mental health worker, and deputy executive director of IHRA. She is qualified in psychology and leads work on InterLink, a national intersex psychosocial support program. She says:
The legislation and regulatory oversight body is an important first in Australia, ensuring that medical practices directed towards intersex traits are accountable, multidisciplinary and respect people’s right to fully participate in healthcare decisions and meaningful conversations about their bodies. I thank the ACT Government for honouring intersex voices through a consultative and collaborative process in drafting this legislation and hope that the passing of this bill marks a new beginning for clinical, government and community-based service providers to work together to tangibly improve life-long health and mental health outcomes for intersex people in the ACT.
People with intersex variations live in their bodies well beyond any consulting room or children’s hospital. As such, the bill’s consideration and resourcing of dedicated psychosocial and peer supports is crucial to ensure that stigma is addressed within a social context rather than a clinical one, so that people, and families, can feel whole, strong and proud in the bodies they have and with the decisions they make.
Dr Anita Jacombs is a medical doctor, surgeon, and a member of the board of IHRA. She says:
I welcome the introduction of legislation in the ACT as it is a much-awaited development for the care and medical management of people with innate variations in sex characteristics. It recognises the importance of our human rights and right for body autonomy and underpins our need to determine our own healthcare and any “non-life saving” medical or surgical treatment. Importantly the bill outlines a modern multidisciplinary process that seeks to provide individualised patient-guided treatment that meets the physical, psychosocial and sexual needs of people affected with these conditions.
Personally, I also hope it will help my community to have a voice. A voice in their own health care, a voice in their own identity and a voice with each other so we can tell and listen to our stories and how we can have fulfilling and loving lives.
Cody Smith was born and raised in Canberra. They are our training and communications officer:
I have always lived with the consequences of decisions that should have never been made for me, and a profound grief that I have been unable to prevent these circumstances from happening to others. I’ve often described this burden of activism as being like a dripping tap. It’s hard to focus on other things when all you can hear is a dripping tap, and similarly the trauma of medical violence takes over every conversation about intersex justice. More importantly you can’t fix the issues caused by a dripping tap without fixing the tap first. Indeed, how is our community supposed to come together and heal when we all know the harm has never stopped?
So when I say these laws provide a profound sense of relief. It is the first time a government in Australia has recognised that all the surgeries, hormones, and decisions taken away from me was wrong and that it can’t be allowed to happen to anyone else. More importantly than the personal, our community has been given the opportunity to replace the intersex narrative of violence, trauma, and grief with one of celebration, healing, and joy. For the first time we have the chance to thrive on our own terms. Now the conversation has been changed here, it can be changed anywhere. All people living with any variation in sex characteristics, anywhere in Australia, deserves this sense of peace and justice and what it can bring.
Steph Lum lives in Canberra. They are a poet, lawyer and founder of YOUth&I, a project auspiced by IHRA:
This bill is a huge step forward in protecting the human rights of intersex people in the ACT and offers a helpful model for other jurisdictions. It represents a shift in how the ACT thinks about us – as people deserving of a voice in decisions that impact us and as people deserving of appropriate and informed health care. I am proud to live in Canberra and see the thoughtful and consultative work that has gone into developing this bill.
Nevertheless, while this bill is an important first step, it is just the start of a cultural change that needs to happen within medicine and the broader community in how intersex people are seen and treated. We must continue to work to ensure the mechanisms set up in the bill operate effectively and continue the important work of raising awareness about the existence of intersex people and the challenges we face, as well as the pride intersex people like myself can feel about being who they are.
Gabriel Filpi is a Canberra resident, biological anthropologist, our health projects officer, and a recent member of the ACT LGBTIQA+ Ministerial Advisory Council. He says:
I am incredibly proud as a Canberran, and as a member of staff at Intersex Human Rights Australia of the commitment made by the ACT Government to introduce legal protections for people with innate variations in sex characteristics. Through my various roles working with the intersex community in the region, I have seen the need for these protections, and have lived experience of this need. Above all, I am thankful, relieved, and hopeful as an intersex individual, that this commitment will translate into meaningful change, increased support and protection for vulnerable people with innate variations in sex characteristics.
We hope that such measures amplify vulnerable voices and create space and protection for those yet without a voice. We hope this allows young people to grow up in a body that they get to make decisions about, rather than a body that carries the decisions made on their behalf, and the harm that these choices can have. I hope to see these protections expanded upon in future and applied universally as this right is a human right.
Margie McCumstie is an author and activist, vice-president of Intersex Peer Support Australia and NSW/ACT state rep. She says:
Doctors lied to both myself and my parents about what they did to my body. They hid my intersex variation from me and made decisions for me- completely disregarding my right to bodily autonomy and to give consent. I am one of many people with an intersex variation. Informed consent, respect and communication should be a human right. But since the medical fraternity has repeatedly defended their reprehensible past actions and continued them, it is legislation like this that ensures that it stops in the ACT.
Olympia Balopitos is our legal projects officer and a member of the South Australian LGBTIQA+ Advisory Council. They say:
This Bill is an instrumental part of the history of our movement. It provides a platform for recognition and will be foundational to other Australian states and territories to follow suit in legislatively protecting infants and children with variations of sex characteristics from deferrable surgical intervention. If the Bill becomes legislation, it will represent the first time an Australian government has legally acknowledged the harms associated with intersex genital mutilation. It sends a message to all intersex people that it is the laws that need to change, and not our bodies.
Up until this point, our bodies have been up for debate. We have been rendered invisible to society, to our families and to ourselves through surgical intervention, consequently limiting our opportunities to access community, self-acceptance, and adequate healthcare. This Bill holds the power to rewrite this narrative for future generations, encouraging social understanding, education and subsequently, social progress. It also serves as a tool for healing, knowing we can tell our younger selves, “What happened to you won’t happen again. Not in the ACT.”
IHRA also supports the Equality Australia media statement.
Interviews and comment
For interviews and comment contact Morgan Carpenter.
Staff and community members will be available for interview in Canberra after the legislation is introduced.