Book-ended by Intersex Awareness Day on 26 October and Intersex Remembrance Day (also known as Intersex Solidarity Day) on 8 November, what is known as ‘14 Days of Intersex’ is a chance to bring attention to the challenges intersex people face.

Intersex people are individuals who have sex characteristics (including chromosomes, gonads, or genitals) that do not fit the male and female binary. This may be apparent at birth, or it may not be discovered until later in life, like when they are going through puberty or trying to get pregnant for example.

Because the information is not currently collected by the census, it is difficult to say exactly how many people are intersex, but Intersex Awareness New Zealand (ITANZ) believes there are around 2000 intersex people in New Zealand.

ITANZ was founded in 1997 by Mani Mitchell, who was the first New Zealander to come out publicly as intersex, and has been a strong advocate for the community ever since.

We spoke with Mani and Jelly O’Shea, also from ITANZ, about the issues affecting the intersex community, how to be a good ally and the advice they have for parents of intersex children.

How can someone be a good ally for the intersex community?

Jelly – We often find that there’s a sense of intimidation or a lack of awareness on how to [be an ally]. I think that’s just about building confidence in [allies], to know that there is lots they can do to support intersex human rights in Aotearoa, but also signalling to other people that they too can step up. It’s so beneficial, the more people that talk about bodily diversity and intersex bodies and bodies with variations in sex characteristics, the more we’re all talking about it, the more it brings that taboo, secrecy and shame away from the subject, and hopefully goes beyond normalising and we can look at celebrating diverse bodies.

Mani – For the last month the intersex community around the globe has been meeting in various online forums because we were unable to get together this year because of Covid, so our last event was on how to be an ally and we had over 200 people attend, which says to me that we’ve been doing our advocacy and education work for a long time, but people really do want to stand beside us and want to know how to do that well. So it was interesting for me. The usual misconceptions around what is intersex came up. Basic 101 is still important, and then reinforcing standing beside us, but not speaking for us.

How have things changed over the last 20 years?

Mani – The really good thing is, for our intersex community, many of us have trauma backgrounds and in the early days it was really hard to work together as a community. People with trauma histories, it’s very easy to do that transferential stuff and not be very gentle with each other, so we’ve learned over those 20 years a lot more about trauma and about how to be around trauma and how to work as a community.

Also, this is a very small community in terms of the people that work frontline, but we’re connected around the globe. For example, two years ago Jelly went with a group to South Africa. Georgia went to a conference in Italy. These connections are really important, they sustain us, but it means we have this narrative and agreement across the globe around the key issues, and I think doing that has been a huge achievement in the last 20 years.

What still needs to change for intersex people?

Jelly – I’ve got hope for changes. We’ve been working with InsideOUT to write resources for the Ministry of Education, safer spaces for rangatahi and takatāpui, queer, gender-diverse, intersex bodies in school environments. What I would love to see is diverse, intersex bodies and bodies with variations of intersex characteristics being included in sex education or in biology. The real basics of, ‘We are here’. This is a very natural bodily variation seen across all forms of nature. We need to see the wins, we need to have the moments together and find ways to fuel that allyship in action, to help boost us forward.

How do you protect yourselves and your community while doing this work?

Mani – Sometimes you have to breathe deeply and remind ourselves that this kind of change takes time and we just have to be strong and resilient. We just have to continue to support each other to do the work, because the other thing about doing this work that is hard is the burnout rate with frontline activists and advocates is quite high, so sharing good practice, learning how to look after ourselves better has been another learning and growth out of the community.

Jelly – That sense of solidarity is so key especially when you live in a world that is very much telling you that your body is meant to look a certain way.

How important is community to your work?

Jelly – You have been told you have a rare "disorder", and then coming through and finding other intersex people has been like coming home and finding family. There’s such a beautiful thing that happens when we’re all together. How we do activism and advocacy is with more awareness now. The expectation that we have to tell our own stories over and over again is shifting and changing. We’re having more conversations about how to keep ourselves safe so we’re able to stay here and do it longer. That’s really important. Especially when we’re not seeing monumental changes, I think some days it can make you feel quite invisible.

What advice do you have for young people?

Jelly – Often people find out about their variation through a medicalised space, so often it’s taking time, slowing things down, making sure you’re having open conversations with your whānau if possible, and just making sure that you’re accessing multiple portals of information, not just the medicalised one. Our young people are super connected with the global information, so things are just a click away.

For people of my generation or Mani’s generation, it took a lot longer for us to connect with other people. I think finding support around you from other people with diverse bodies is key and empowering and important. I think the main thing for young people is just taking the time. Everyone’s having a time, let alone having a body that doesn’t fit into some of those binary concepts of how it’s meant to perform, being a teenager.

What advice do you have for parents of intersex children?

Mani – Shame and fear often inform how parents handle this situation. Parents need support as well and need to know this reality is much more common than people realise.

Jelly – We just made a resource that was attached to a project that was done by the Youth Sector Rainbow Collective (YSRC), and that was about reaching out to whānau, and whānau really supporting their kids, even if they don’t get it or they’re not quite up with the language. It was all about centring whānau in terms of their own education around their kids who might be part of the rainbow.

Also, trying to connect a bit more body positivity, a bit more celebration, bringing in some themes of… unless you’ve got a life-threatening condition, your baby - your child - is actually perfect just the way they are. Just holding that for a moment too and bringing some of those fear responses down and some of those negative narratives down and just being like, ‘We’re all good! In fact, we’re fabulous!’ It doesn’t have to be a trauma-informed story. Parents’ decision-making can decide a lot around the outcomes for their kids.

What will you be celebrating during 14 Days of Intersex this year?

Jelly – It’s amazing that we’ve got over half intersex on our board now. We’re at 50 per cent. There’s heaps of joy in that and being able to say we’re the only intersex-led organisation in Aotearoa is amazing. Being able to have mates wrapped up in that work is really awesome.

Is there anything else you want to say?

Jelly – It benefits everyone, these conversations, because we’re all affected by concepts of normal bodies, so just reframing that and trying to have some fun with it at the same time.

Mani – Intersex people are extraordinary and amazing and the day should be a day of celebration.

One way Mani and Jelly say allies can support intersex people in New Zealand is to affirm the Darlington Agreement, which expresses the human rights of intersex people in Australia and New Zealand.