Intersex education within primary healthcare is harm prevention

With the establishment of the national healthcare system, Te Whatu Ora, New Zealand’s healthcare professionals will be presented with the opportunity to address areas that have previously been neglected or siloed. One of these key areas is intersex healthcare reform, which will see the implementation of new guidelines for healthcare professionals informed by an intersex-led, human-rights and mātauranga Māori framework.

These guidelines and subsequent training requirements are aimed at supporting those with innately diverse bodies, sometimes known as intersex, to experience a lessening of harms within healthcare environments.

Intersex is an umbrella term that aims to provide a catch-all for up to 40 innate and distinctly different variations of sex characteristics (VSC). In medical environments, you may be more likely to hear the terminology “disorders/differences of sex development” (DSD). In this article, intersex and VSC are used interchangeably.

These diagnoses can include chromosomal, hormonal, genital and reproductive variations, all of which can develop naturally within the womb, or become apparent during adolescence and puberty. Numbers vary due to the lack of comprehensive research, but we do know that intersex variations are found in approximately 1.7–2.3 per cent of the population – not as rare as we are often led to believe.

How these variations manifest and are medicalised can affect individuals differently, and that can be dependent on whether the patient and whānau at the centre of treatment have been given all the information available, in order to provide informed consent.

GPs are increasingly being asked to provide assistance and referral for gender-affirming healthcare by patients and families, yet there remains a lack of awareness and miscomprehension around the term intersex. It is often misunderstood as being related to gender or trans identities. While there can be overlapping human-rights implications related to discrimination, the outcomes and social harms felt by these two communities can manifest differently.

While trans and non-binary people sit within a gender identity framework, intersex sits within “sex characteristics” framing. It can be helpful to think about this by acknowledging that we all have a sexual orientation, gender identity and expression, and sex characteristics (SOGIESC). This means you can be heterosexual, cisgender and have VSC. You can also be queer, transgender and endosex (born with typical sex characteristics).

It is important to understand that having a body with atypical hormonal, reproductive or chromosomal differences puts individuals in a vulnerable position, often exposing them to potentially intensive, irreparable and invasive medical and surgical interventions that seek to “normalise” their male or female attributes.

To understand why we treat intersex patients or those with VSC the way we do, we need to go back and look at the development of one medical protocol that still influences the standardised processes of today. The medical model was pioneered in the 1950s through the experimentation and research of John Money, a psychologist at Johns Hopkins University, US, but born in Morrinsville, New Zealand.

Strict delineations between male and female bodies were developed by Dr Money, in order to prove his thesis that a medical assignment of gender was possible on infants where ambiguity presented. Before this period, there was no one unified medical or social approach to intersex variations; records across the ages show intersex people seeking out affirming treatments, and other infamous examples such as the memoirs of Herculine Barbin depict a rather harrowing tale of social exclusion and medical experimentation.

However, the work of Dr Money proposed to correct nature on how bodies should look, work and operate, based on stylised concepts of male and female. While Dr Money’s work on intersex has been widely discredited, the medical protocol remains relatively unchanged to this day.

At the first suspicion of an intersex variation now, an individual will be referred for further examination and specialist appointments with one of the few medical experts in this country who specialise in surgical and endocrine techniques to support the “normalisation” of a patient’s body.

This process of specialisation can mean there are not a myriad of options presented to the patient or their whānau, and most primary and secondary healthcare professionals remain disconnected from what happens next. Many profess it can be too uncomfortable and confusing to talk about from a primary healthcare perspective.

While technical expertise isn’t expected of GPs, there is ongoing responsibility and opportunity to engage with the person in front of you about their overall health and wellbeing. You could provide supporting information that could offer reassurance, challenge discriminatory beliefs and model the use of strengths-based language and concepts. But what could that look like?

Build trust and create a safe environment for people to share any concerns or fears. If you don’t know the answer, that’s okay. You can find out together what any next steps could be, and to be fair, there is not a one-size-fits-all scenario here.

Respond to the person in front of you. Mirror the language they use. They may use terms like DSD, VSC, intersex or a variation-specific diagnostic term. Perhaps they are not aware of the terminology that’s relevant to them, and you can help them connect to more information if that is something they would like.

You can remind individuals and whānau to take time before rushing into any decisions or next steps after diagnosis. Remember, whānau and individuals deserve to know all the information available, before making potentially irreversible decisions.

De-escalate shame or fear responses from patients or parents. You can do this by offering up positive resources, including providing new language/terms that move away from “disordered” or “abnormal” pathologies and towards “natural variations”, and by correcting any confusion or conflation that arises regarding health concerns, sexuality or gender.

Remind people that they can and should seek multiple clinical opinions. Non-clinical perspectives are important and available as well, through intersex-led organisations and variation-specific support groups, therapists, family counselling and sexual health support workers.

Peer support is available, and it can be a powerful way to connect those new to diagnosis with other adults and parents who have gone through the healthcare system. Peer support enables the sharing of experiences and feelings, and it challenges the isolation, shame and secrecy so commonly held within this population.

Talk through what informed consent is, and why it is important that everyone has all the information available to them before making any decisions.

Check your own medical bias and expectations of what you might perceive as a “normal” body. If we can start to challenge the beliefs that dictate a primary focus on fertility and the performance of heteronormative sex, we can start to see a more nuanced and considerate perspective of health and wellbeing for the person at the centre – be that infant or otherwise.

In addition, it is important to know that some people reject any other framing of identity other than “being intersex”, while others will only relate to it as a medical condition. There is a wide range of interpretations and perspectives among this demographic. Remember the following:

• Some young adults and older people with VSC will not be comfortable being associated with the term intersex.
• Some people may be supportive of the surgical interventions they have received and feel it’s important to keep this information private.
• Some people who connect with the term intersex may be living with impairment and disability due to surgical interventions, and they may hold regret and anger directed at either healthcare professionals or their own parents and whānau, especially if any decisions were made before they could give informed consent.

We know from the work we do when surveying our New Zealand communities that many people are not communicating with anyone but their healthcare providers about these subjects. Shame and secrecy are developed through being told you have an abnormality or disorder, as someone or something that needs to be fixed. These psychological responses can have lifelong impacts. How you respond and perceive those with innately diverse bodies and lived experiences will make all the difference.

The United Nations continues to implore governments, both globally and here in Aotearoa New Zealand, to acknowledge the historical and ongoing harms that occur through the medicalisation of VSC. Specifically, the United Nations Convention of the Rights of the Child calls on the New Zealand Government to bring an end to invasive medical interventions and surgeries, provide redress for harms that have occurred, and encourage connection and community through intersex-led peer support.

Intersex advocates have fought for, and achieved, legislation banning a range of intersex surgical interventions in Malta, Germany, Greece, Iceland, Spain and Portugal. Most recently and close to home, the Australian Capital Territory Government is now looking to follow suit. So, what does this mean for us here in Aotearoa New Zealand?

Primary healthcare providers are often the first point of contact for intersex individuals seeking medical care. Therefore, as a GP, you have the unique and important opportunity to provide appropriate and informed care, and to be aware of the serious issues within medical pathologies that relate to “disorders of sex development”. Once educated, you can reduce some of the confusion, fear and shame held by individuals and whānau, by dispelling any misinformation, fear and conflation.

The broader lack of understanding within primary health is what Intersex Aotearoa seeks to combat by providing advocacy, education and peer-support services. But as a small NGO, we can only do so much. We need to be able to help lead those on the front line, to provide much needed support on the ground.

Jelly O’Shea is the communications and community manager at Intersex Aotearoa