Significant work is needed to transform Aotearoa’s health system so that it can provide equitable care for intersex people.  

Still too often, intersex people are subject to “normalising” medical interventions that aim to make their bodies look or function more like what is deemed typical for endosex (non intersex) bodies. These interventions include surgeries performed on children, young people and adults without their informed consent, which have been widely criticised by United Nations committees and other human rights advocates. As well as these directly harmful practices, there is a general lack of robust evidence about intersex people’s healthcare needs, and significant gaps in medical training and clinicians’ knowledge.

People who are intersex need a healthcare system that:

  • is not actively harmful - a system that is grounded in human rights and respect for bodily autonomy, does not engage in non-consensual medical interventions, and is equipped to deal with the ongoing harms caused by past medical practices.

  • is equipped to support intersex bodies - a system where there is timely and good quality access to individualised support for people’s varied needs for monitoring, medications and support, which could include hormones or hormone blockers, bone density scans, other medications, ongoing monitoring of cancer risk, support for reproductive health decisions and gender-affirming healthcare.

  • understands and responds to the impacts of stigma and judgement - a system that engages in trauma-informed practice, does not perpetuate interphobia, homophobia or transphobia, provides support for parents and whānau, connects intersex people with peer support, and integrates mental health support when it’s needed.

We advocate for intersex healthcare that is:

  • guided by the principle of mana motuhake - respecting intersex people’s lifelong  autonomy over their own bodies and wellbeing.

  • based on fully informed consent - that is, enabling intersex people to make their own supported decisions about their bodies as far as possible, consistent with their self-determined goals, given clear information about the known risks and benefits of any medical treatment. This means delaying non-urgent medical procedures until a person is able to understand the long-term implications and can make their own decisions. It also means that if someone else is making a decision for an intersex person, like a parent making a decision for a baby, they need to be provided with accurate and non-biased information about options, and the risks and benefits of treatment or declining treatment. This also means healthcare providers building rapport and creating a relationship of trust that allows time and space for people to consider all alternatives, impacts and outcomes, without the provider’s personal perspectives of treatment dominating decision making. 

  • focused on providing options and choice - considering all treatment possibilities, including no treatment, and enabling a person to choose what is best for them, based on their own circumstances, needs and preferences. Providers should not limit options to just the easiest, cheapest or most common approach. They should not assume that certain treatment options are correct because of their assumptions about what is best for a person’s appearance, gender or sexuality. 

  • depathologised - based on the core understanding that when someone’s body doesn’t fully align with common stereotypes of what is deemed as “normal sex development”, that this is not an indication of a medical emergency, illness or disorder (even if some intersex variations do include physical health needs that require immediate treatment or ongoing medical support throughout the life span).

  • respectful of privacy and bodily autonomy - ensuring that data collection and clinical practices centre a person’s right to privacy when collecting or sharing information about a person’s intersex variation and healthcare needs. For example, intersex people can be subject to medical curiosity and unnecessary examinations - the system needs to shift so that it prioritises the person’s dignity over a provider’s interest.  

  • holistic and supportive of broader understandings of what supports a person’s wellbeing, such as those described by Te Whare Tapa Whā (which encompasses the health of people’s tinana (body), hinengaro (mind), whānau (family and social connections) and wairua (spirit and sense of purpose and belonging) as well as their connections with whenua (land or environment))

  • lifelong - concerns about intersex healthcare often focus on infants and young people who have intersex variations that are visible at birth, and are therefore more likely to be subjected to medical interventions without their informed consent. Intersex variations can affect people’s healthcare needs throughout their lives, and intersex people need access to relevant healthcare as they grow up and grow old.

  • developed and led by and with intersex communities - informed by lived experience at every level of decision making, as intersex health advocates can offer expertise in where there are gaps in care across the system. 

  • Integrated with intersex community-led organisations - medical referral to intersex-led services is vital to a holistic care model. Community led organisations should provide access to information, advocacy and connection without shame, secrecy and pathologisation often associated with intersex variations. These community led services for intersex people and whånau should include access to peer support, healthcare navigation and other ways to connect to people with a similar lived experience. Community led organisations can provide support for people to comprehend decision-making processes, and advocate for better systems of healthcare, bodily autonomy and informed consent.

  • in solidarity with yet separate from trans healthcare needs and aspirations - recognising shared issues such as bodily autonomy, as well as differences. Both communities are commonly misunderstood and mistreated in healthcare, but both trans and intersex people are asking for the same care, dignity and options as the general public when navigating their healthcare needs.

 

For decision makers, policy writers and advocates

If you’re advocating for improvements to intersex healthcare, or developing policies or plans to support the health system to be more responsive to intersex people, these resources will help you understand the issues and needs:

Local research includes:

Community-led advocacy for human rights-based healthcare includes: 

Policy documents and statements include:

The Darlington Statement is a 2012 joint consensus statement by Australian and Aotearoa intersex organisations and independent advocates, that sets out a series of community priorities. Te Ngākau Kahukura is a signatory of the statement. 

You can also get in touch with us for advice.

 

For healthcare providers

Intersex people might need to access healthcare related to their variation of sex characteristics, some might have needs for regular healthcare that are different from what might be assumed based on their sex or gender, and some might need to access gender-affirming care (https://www.tengakaukahukura.nz/gender-affirming-healthcare) . Everyone in the health system should have confidence and knowledge about working with intersex people, and should be prepared to discuss individual health needs and learn about pathways for support and referrals when they’re needed. These resources provide more background and guidance for healthcare professionals.

Watch our webinars on intersex health and wellbeing

 
Watch: trans and intersex health: community support and patient centred care
 

If you’re thinking about how to improve your service’s responsiveness, our evaluate tool is a great place to start.

 

For intersex people and their whānau

If you’re looking for support with your health as an intersex person, or you’re supporting someone, these are places where you can find direct support:

  • If you just want to talk to someone, OutLine provides a free nationwide peer support service for intersex and rainbow people (free call 0800 OUTLINE (0800 688 5463) or access online chat any evening between 6pm and 9pm to talk to a trained volunteer)

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