Rogena Sterling and Angela Meyer are members of the Gender Justice Collective Te Roopu Manatika-ā-Ira., an independent, non-profit network drawn from all walks of life with the aim of working towards making Aotearoa New Zealand a world leader in Gender Equity.

Since forming in June 2020 the GJC have run YouChoose2020 Survey, developed the We Choose2020 gender equity scorecard and are producing a series of AMAs and articles to highlight ways to move the dial on gender equity.

Intersex people are one community among many in Aotearoa New Zealand who are suffering from discrimination, inequalities and and inequity. It is for this reason that the Gender Justice Collective was established to highlight the issues that women, wāhine, trans women, non binary people, intersex people, takatāpui face and work towards a future where everyone has the opportunity to be recognised, included and be a equal member of society.

Before World Intersex Day (October 26), Angela caught up with Rogena - an intersex person and board member of Intersex Awareness NZ - to discuss what intersex means.

Angela Meyer: There is a lot of misinformation and confusion about what intersex is and isn’t. Thanks for taking some time today to bust some myths and for your generosity in sharing your experiences. What prompted you to want to do this AMA?

Rogena Sterling: In 2020 an amendment to the Crimes Act 1961 was passed. It made Female Genital Mutilation illegal - unless you are intersex. This happened despite the intersex advocacy organisation urging for this amendment to include intersex surgeries. It was hugely disappointing as this act has not protected intersex children, especially girls the the amendment purported to protect. ‍

AM: What does intersex mean?‍

RS: Intersex refers to a person who has sex characteristics (including genitals, gonads and chromosome patterns) that do not fit typical binary notions of male or female bodies. Sometimes people refer to intersex as variations of sex characteristics (VSC) and others use the medical term of differences/disorders of sex development (DSD).

Intersex people make up a wonderfully diverse community that represent as men, women, and non-binary people (people who live beyond the binary of male-female). Intersex folks have varied understandings of, and relationships to, their sex and gender and sexual orientation including being heterosexual). Being intersex is not a gender identity nor a sexual orientation. It is also important to point out because not everyone who is intersex feels like they are “part of the rainbow”. Some intersex people also have various disabilities. ‍

AM: How many people are intersex?‍

RS: Though there are not definite statistics in any country of the world, from some studies of medical literature, we know at least 2.3% of the population are intersex.‍

AM: Is intersex the same as hermaphrodite?  

RS: No. Hermaphroditus was a Greek god who represented a person walking outside of the binary (non-binary as we say today), but unfortunately Western science has colonised the term to mean self-reproducing organism. As such many intersex people find this insulting and derogatory as humans cannot self-reproduce. It is not a term that should be used to refer to intersex people, though some may identity either with the myth or because that was how they were referred to at birth.  

AM: How do people know if they are intersex?

RS: Being intersex is not a ‘gender identity’. It is a person who has sex characteristics (including genitals, gonads and chromosome patterns) that do not fit typical binary notions of male or female bodies. There are over 30 (possibly 40) variations of sex characteristics that are identified as intersex, though as science understands more, the number of variations increase. A list of variations can be found here.

Though we know there are at least 2.3% of the population who are intersex, the problem is unless people have access to their medical records, and providing that they have been diagnosed as intersex, they will not know that they are intersex. They may recognise that there is something different about themselves, but not that they are intersex. As medical records are only kept for a short period of time, 10 years unless in use, it is useful for parents to keep a copy for their children when they grow up and desire information about their history. This is part of their whakapapa.

AM: What happens to babies?

RS: Our society is based on a male-female (or binary) world, which means every child is  assigned a ‘gender’ at birth. For many people this may be uneventful and match who they are, but for some people it is not so simple. Intersex people who are identified at birth (some don’t find out until their teenage years or later), are assigned a sex/gender, and then if necessary, have surgery and/or medical treatment to ensure their bodies match their assigned ‘gender’.

Many parents are not aware of the social construction involved in this process and give their consent believing it is a medical issue and has a medical basis. But gender is not so simple, it is, in fact, an idea of what a boy or girl should be. Choosing a baby's gender when it is not clear, means that there is no self-determination for people who don’t fit neatly into a specified gender. This causes much physical, psychological, mental and spiritual suffering that remains with people and becomes more pronounced when people find out the truth and if the person did not desire it becomes a from of torture.

AM: Do they have to have surgery?

RS: Intersex traits in and of themselves are not life-threatening. There are sometimes associated serious medical symptoms, such as with salt-wasting congenital adrenal hyperplasia (SW CAH) and turner syndrome which may require medical attention. However, these associated health issues do not require a permanent assignment of ‘gender’ nor the modifying of the child’s body to match the assignment of ‘gender’. This can wait until the child is of age and has a sense of who they are and consent to it if they desire.  

AM:What happens if they have been assigned the wrong gender at birth?

RS: Though for many the assignment of a ‘gender’ may have resulted in matching who they are, it is not always that way. Assignments are a best guess which are usually based on what people see at birth, but it does not take into account a person’s identity development. If a person has been wrongly assigned at birth it can have an impact on a person’s life. We do know that transgender and intersex youth have a high rate of attempted suicide or suicide compared to the average population and the mental health issues due to such factors and a lack of acceptance of sex and gender diversity from those around them.

AM: Can they have children?

RS: Fertility is not well studied among intersex people. It differs between variations and even sometimes between people who have the same variations. It would be worth preparing that it is possible that a child with variations may have fertility issues. But, sometimes the infertility has been caused by the medical interventions that the child did not consent to and have rendered the child infertile as an adult.

AM: Do they have to take hormones for the rest of their life?

RS: Not all intersex people who have had medical interventions require hormones, but those who do will usually have to take them for most of their life.

AM: Do women go through menopause?

RS: Some intersex people go through menopause and sometimes this occurs at a younger age than the average person.‍

AM: What happens at puberty?‍

RS: As most people know, puberty is an age when another major development stage occurs. For many intersex people though, as their bodies are different to the ‘majority of teenagers’, it becomes a hugely stressful time full of anxiety. It is a stage where some intersex people find their body is not changing as others in their assigned ‘gender’ and go to the doctor to find out why. At this point they are told they have a certain ‘medical condition’ but they are not usually told they are intersex. As you can imagine for a teenager, they feel lonely thinking that they are the only one in the world (unless they are introduced to a support group such as ITANZ).  ‍

AM: What is the best thing to do if your child is intersex?‍

RS: The first thing to do is love them. The second thing is to support them. And guide them with an open mind. Find support for yourself for the well-being of the child and the family and the well-being of both. Research shows that children who grow up in a supportive environment have a higher chance of improved well-being in all areas of their life. Lastly, be aware that though your child may have been assigned a ‘gender’, they may identify differently to their assigned ‘gender’.  ‍

AM: Why is it a big deal?‍

RS: It is a big deal because intersex people face shame, discrimination, and at the extreme, torture. Some are killed for who they are, even today. The harm is simply a result of who they are and society not accepting diversity.

Though there is a lot of talk about sex/gender diversity, it is based on being equal as male or female. These very notions have led to 1000 years of violence, discrimination and even murder of intersex people to maintain the binary division of male and female.  

On October 1, the UN made a statement explaining the issues that intersex people face: ‍

The Vienna Declaration states that human rights are universal, indivisible, interdependent and interrelated. The VDPA makes clear that “every person is born equal and has the same rights to life and welfare, education and work, living independently and active participation in all aspects of society”. However, intersex people - that is, individuals who are born with sex characteristics that do not fit the typical definition of male or female bodies - continue to face serious and widespread human rights violations and abuses.

In many countries around the world, intersex people are subjected to medically unnecessary surgeries, hormonal treatments and other procedures in an attempt to change their appearance to be in line with gendered societal expectations of male and female bodies without their full and informed consent.

Intersex persons are often denied full access to their medical records.

Throughout their lives, people with diverse sex characteristics face discrimination in all areas of life, such as access to education, health, employment and sports, among others, as well as restrictions on the exercise of legal capacity and in access to remedies and justice.

We call on governments as a matter of urgency, to protect the autonomy of intersex adults and children and their rights to health, and to physical and mental integrity so that they live free from violence and harmful practices.

Governments should investigate human rights violations and abuses against intersex people, ensure accountability, reverse discriminatory laws and provide victims with access to remedy.‍

New Zealand still has very few protections for intersex people and they still face many of these issues even today. ‍

AM: What can people do to be more accommodating?‍

RS: The following are some ways to remember to be more accommodating to the diversity of human including intersex people:

- Begin with the premise we are human being like everyone else

- When someone is different to the norm (different to male or female whether identity or bodily difference), include them to make a new normal

- Accept that sex comes in many forms and that differences are not abnormalities but expressions of humanity

- When designing regulations and policy in government or organisations ensure that it is not restricted to a binary of male-female and that diversity is provided for.

- When you hear someone restricting diversity to male and female, remind them it is not that simple and humanity is wonderfully diverse.

- When you hear someone being harassed or bullied because their sex or gender is outside of the norm, stand up for them.

- Be supportive, find resources and educate yourselves as to what intersex is (that is the purpose of these questions) and make sure we are included however we identify.