Intersex people on the importance of being understood, possible inclusion in upcoming census

Usually the Queen's Birthday Honours have been divided into men and women, but this year for the first time, there's a third column after Mani Mitchell, who is intersex and non-binary.

They were awarded the honour for services to intersex advocacy and education, after helping found Intersex Awareness New Zealand in 1997.

Recently it was announced that our census may soon include questions on intersexuality for the first time - but what exactly is it, and why don't we know how many Kiwis fall into that category?

The term intersex has been around for 100 years, but many of us aren't exactly sure what it means.

"Intersex is like an umbrella term for a natural body variation, and we often say now variations of sex characteristics," says Jelly O'Shea, communications and project manager at Intersex Trust NZ.

She explains these variations can mean a myriad of things, and there are up to 40 different variations that are known.

For someone who is intersex, it can be frustrating because people often confuse the meaning of the word and put them in a box.

"I feel invisible because some countries have attempted to recognise our identity, but there's conflations. People think that intersex is a gender identity, and it's not a gender identity, it's simply the way a person was born," says Eliana Golberstein of the Intersex Trust NZ

By not being included in the census, intersex people say they feel left out of society.

"Intersex people have never been counted in Aotearoa and that's kind of part of a pervasive sense we experience in New Zealand, being excluded or at times we're actually kind of coercively removed from the situation," O'Shea says.

Eliana Golberstein holding the intersex flag.
Eliana Golberstein holding the intersex flag. Photo credit: The Project

But it's not just about being forgotten when it comes to filling out the census - many intersex people are silenced at birth.

"Doctors have been torturing us. Even though they feel like they are healing, they're actually doing surgeries that we haven't consented [to]," Golberstein says.

Urologist Andrew Lienert says consent and decisions are ultimately up to the child.

"Parents and doctors will carry their biases as to which way they think the child may go, but ultimately, the child has rights to make their own decisions."

Golberstein says it's "very important" for the government to recognise intersex people.

"We have unique struggles, we have unique pain, and we want to be visible to the government."

With Stats NZ now including intersex people, this will give them an opportunity for their voices to be heard.

"The inclusion would mean so much for our community uplift, our hidden voices, but also give us a read on what our needs are and how we're being let down by places such as healthcare, employment, education," O'Shea says

"We really want to rewrite the script and really get intersex to be something that we can see ourselves reflected by."

Correction: A decision has not yet been made by Stats NZ about the inclusion of an intersex question in the 2023 Census. They wish to note that this area of work is important to them and are working actively with the intersex community to progress it.