Be There for intersex young people: a webinar for parents and whānau

Moira: Kia ora koutou.

Me karakia tātou.
Kia hora te marino

Kia whakapapa pounamu te moana
Hei huarahi mā tātou i te rangi nei

Aroha atu
Aroha mai

Tātou i ā tātou katoa
Hui ē!

Tāiki ē!

Kia ora koutou,
mihi atu kia koutou katoa.

Welcome, thank you so much for being here
for this webinar session which is around supporting

parents and whānau of intersex young people.
Weʻll talk a bit more about intersex young

people and our organisations and the
Be There campaign that this is part of in a minute.

But just to start off with Iʻll stop sharing 
my slide and we can all introduce ourselves,

let you know whoʻs all here.
Iʻm Moira Clunie, Iʻm Project Lead

for Te Ngākau Kahukura, and coming to you
from Tāmaki Makaurau, from Mt Eden in Auckland.

Iʻll pass over to Joey to
introduce themselves.

Joey: Kia ora. Thanks Moira, thank you
for opening this space for us.

And kia ora koutou, itʻs nice to have
some people here with us live

and wonderful also if you are watching this
as a recording which how we anticipate quite a lot

of people will probably be getting into it.
So, kia ora on the non-live part of this.

Iʻm Joey, Iʻm the Education Lead
at Te Ngākau Kahukura.

My pronouns are they/them and Iʻm also Zooming
you from Tāmaki Makaurau, specifically out west,

near Te Henga, Bethells Beach which is also where
I grew up, on the whenua of Te Kauwarau Ā Maki.

We can probably hand to Jelly next, right?
We have a fabulous guest here to do a

presentation and, bring this 
conversation to life with us today. Jelly.

Jelly: Kia ora.

Joey: So nice that youʻre here.

Jelly: Oh, thanks so much for having me.

Iʻm really excited for this conversation.
So, Iʻm Jelly.

Iʻm from Intersex Aotearoa.
Iʻm in Te Whanganui-A-Tara.

And weʻre gonna, I think weʻre gonna
have a great conversation today.

Thanks to everyone here and Te Ngākau
Kahukura and Jono in the background doing tech.

Shout out.

Joey: Shout out.
I was gonna say that but you got to it first.

Jelly: Oh sorry [laughter]

Joey: No, itʻs great. Yeah, we have
our lovely colleague Jono

in the chat is collecting of questions
and various comments so if you have any

questions that occur to you as we go along, 
feel free to pop them into the chat and Jono

will be monitoring that so that we donʻt
miss it if we are mid blah, blah, blah at the time.

Cool .Ok Iʻm gonna say
a little bit about,

the Be There project which is kind of the
mechanism that we are bringing you

this webinar through.
Itʻs a great collaboration

between a whole lot of rainbow led, intersex led, 
trans led support organisations across Aotearoa.

So, itʻs a project from the Rainbow
Support Collective and our members include

Dunedin Pride, Burnett Foundation Aotearoa,
Qtopia, Rainbow Youth, Te Ngākau Kahukura,

Rainbow Health Waikato, InsideOUT, Q-Youth,
Intersex Aotearoa, Outline Aotearoa,

and Gender Minorities Aotearoa.

You can tell where we are [laughter].
One of the things that came through

the process of doing Be There as a project,
which had a kind of public campaign with

some posters and a whole lot of information
on a website and now weʻre doing

some workshops and some webinars, one of
the things that really came through was that

intersex young people and families with young
people with variations of sex characteristics,

we know terminology is varied, were really
being missed in some parts of our messaging,

you know, some of our content really needs
some adapting and some shifting and some

making sure itʻs more relevant for a range
of different perspectives.

And weʻre working on that with the Be There
project, so weʻre deeply grateful to have Jelly

and other people guiding us on that work.

I think that one of the key messages from
Be There has been ʻshow unconditional loveʻ.

Itʻs like the first top level message that 
hits home pretty well for, I would

say any young person so including
intersex young people, rainbow young people,

trans young people, broadly, broadly anyone.
I also thought that one of our key messages of

ʻyou are not aloneʻ is a really relevant one 
because we donʻt want parents and whānau and

caregivers to feel like they are alone either.
This is a webinar that is

particularly aimed at parents and whānau
of intersex young people.

Weʻre welcoming also our other allies and 
supporters and potentially people working

in health and social services who are attending 
to learn more about the topic but our

real goal is to aim this at parents and
whānau of young people.

We want you to feel more confident to support 
the intersex young person in your whānau,

to know where you can go to
get more information or advice.

We donʻt feel like weʻve got all of
the answers here but we are

really, really pleased and grateful and
quite humbled to be part of this conversation.

We know its a really ongoing evolving
everchanging kind of space.

Weʻll be sharing some insights,
particularly Jelly will be sharing

some insights in a presentation about 
intersex health and what some adults

have said they wished their whānau knew.
Ah, yeah, maybe Iʻll stop there.

I could keep going but I wanna keep us 
moving on and I think Moira has the next

slide about some language notes?

Moira: Yeah, thanks Joey. And just briefly
to kind of situate ourselves in terms of the topic,

Jelly will speak more to this later on, but I just
wanted to briefly say that intersex is an

umbrella term that talks about
people who are born with

innate variations in their sex characteristics.

So, they might have chromosomes or bodies
or hormones, genitalia,

a range of different kind of aspects of their body
that might be considered as outside of the

kind of typical definitions of male or female.
Not everybody who fits

under this umbrella might use the word ʻintersexʻ
or might know the word ʻintersexʻ.

They might have just heard a particular 
diagnostic word from a doctor.

They might not be aware of fitting into
this kind of wider umbrella term.

And not every whānau uses the word 
ʻintersexʻ to talk about who their loved one is.

Thereʻs a range of other terminology
thatʻs used around differences

of sex development, words around diagnostic
labels or conditions or variations.

Intersex can be a really helpful umbrella term 
to talk about that whole range of diversity but

isnʻt the word that everybody necessarily uses.
So just to say that briefly and Jelly will

have a presentation and more to say about it 
later, but Jelly did you have anything to add

at this point?
Did I get that more or less right?

Jelly: You nailed it.
That was beautiful.

Moira: Nice one. Thank you, so I’ll close
the slides down again and pass back to Joey

to situate us a bit more.

Joey: Cool. I really just have some
practical notes,

which is about welcoming people to use 
the chat function and the Q&A function.

So, if you want to pop questions or comments, 
thoughts that you have into that,

into the chat, you have the option to 
send it to us as hosts and panellists

only or to send it to everyone.
You can introduce yourself

and ask questions there if you like to.
You’re also welcome just to be a silent observer.

And if you’re watching this as a recording, 
I know that’s what you will be doing.

We’re gonna make some space for answering 
questions at the end of the webinar and

this is gonna be quite conversational.
We’re gonna chat amongst ourselves so if you have

even just thoughts, rather than fully formed 
questions that you just wanna throw into the mix,

that’s really helpful and great for us.
You know, we would,

even if we don’t have the answer to something, 
we would welcome you to ask the question.

We’ve got Jono in the chat, as I mentioned,
collecting things.

The Q&A function is good if you want to
ask an anonymous question.

You know because you can do it in the 
chat but just sending it to us, but we’ll

still know who it was that asked that question.
Whereas if you use the Q&A function, I believe you

can make yourself anonymous completely and
then we won’t know who asked the question either.

That just might be reassuring or helpful 
if you were feeling that way.

We are recording this webinar
and planning to make it publicly available.

So, be mindful of that.
We’re not going to let anybody unmute

themselves and speak as an audience member.
We’re gonna be the only ones speaking

and the only people who will be 
visible will be us as presenters.

But, if we get a question coming in that
is in any way naming any information about

anyone, we won’t be reading that question out.
We’ll be anonymising things, or editing things, or

possibly reframing things if anything comes 
through that we think is a bit...

sharing a bit too much information 
about any particular person.

Just in case you ask something, and it gets 
reframed, and you’re worried about why,

this is partly why because it will be
a public education resource.

So, we’re balancing that, kind of, that edge of
wanting it to be really relevant,

wanting your comments and your questions, 
feel free to put them in and also wanting

to make sure it can go out to a
really wide audience after this as a recording.

And as I’ve said, we’re aiming this primarily,
at parents and whānau of intersex young people.

We know we have a wider audience than that
who are attending or who will be watching this, and

we really welcome all of you and ask that you are 
respectful and generous to each other and to us.

We will be also to you.
We know that these topics are often difficult.

Sometimes not something we know how to talk
about comfortably and with a lot of

flow so we will be doing our best.
Please be compassionate to

yourselves and, and to us about it as well.
Moira, I think you had something else to add?

I love that Jelly is nodding.
I get so much support and good feeling when

Jelly nods while I’m talking [laughter].
So that’s great, thanks.

Jelly if you have anything to 
add at that point, feel free.

Jelly: Thanks.I’m, I’m really
enjoying this webinar so far. Great!

Joey: Thanks.

Moira: Nice one.
I just had a few more thoughts

to add before we get into Jelly’s presentation 
which is just to say that we’re really

coming from a place of wanting to encourage
whānau and parents of intersex young people to

be in a better position to love and support
the young person in their family.

We don’t have medical expertise 
and we’re not coming with medical

advice today.
Te Ngākau Kahukura

and Intersex Aotearoa have worked together 
before on lots of things and we share

some principles on which we do this work.
So some of what’s really important to both

of our organisations is supporting bodily autonomy 
and supporting self-determination, supporting

young people to be who they are.
We want to see a world that actively

embraces and values all of our young people,
including intersex young people,

and doesn’t position or understand any of us
as broken or inherently wrong or in need of fixing.

We want young people to not be getting those
messages as they’re growing up.

Also recognise that medical paradigms and 
diagnosis and the sorts of information that

come from doctors can be really empowering
and useful for some people.

For many people, as well,
we recognise the harm

that the medical establishment has done and,
in some contexts, continues to do particularly,

when they’re working with intersex people.
And we want there to be different paradigms,

different knowledge bases for people
to be able to use and feel supported by.

We also know that lots of people don’t have
heaps of knowledge about intersex stuff.

There’s not that many opportunities 
to have these public conversations.

There might be some clunky language or 
questions or comments that come through.

Really encouraging people to ask 
questions even if they’re not quite

sure of the language or how to word it.
Sometimes, as Joey was saying,

we might offer a different way of
phrasing things for the recording.

And also, wanna acknowledge for
those of you that are here that it can be hard

to be an intersex person in spaces 
like this and to be hearing different

words used about yourself and your experience.
Yeah, wanna really encourage respectful and

generous communications so that people
who don’t know as much can learn

from this conversation.

That’s me, I think.
I’m gonna invite Jelly to

share some slides and some thoughts with us now.
And then we’ll have some space for questions and

conversation afterwards.
And as Joey was saying,

please do pop any thoughts or questions in
the chat or in the Q&A as we go through as well.

But, Jelly, can I pass over to you?

Jelly: You can. Thanks so much, both of you,
for grounding us in such a well held environment,

and, I did want to just say that when we are
talking about this topic, you know,

that we are sometimes covering difficult 
things and lots of feelings can come up.

So, take care do what you need to do
as an audience member.

Because, yeah, it’s a ride but this is hopefully
a gentle one that we all

can enjoy and learn together.
So today, I’m here.

I’m a adult with an intersex variation.

Um, M.R.K.H is my acronym
for my variation.

I don’t even know how to pronounce it.
That’s not me trying to be cool with the acronym.

Says quite a lot, doesn’t it.
But I also wanted to name that I

am not a parent but I’m here today to 
have a conversation about where we’re at,

are at as a broader society and what are some
of the ways to think about the roles of parents and

carers within that as they journey through life 
with the young person with an intersex variation.

So, we’ll be talking about being a child’s advocate,
privacy versus concealment models,

relationships, support, and affirmation.
In this presentation, and I’m sure that

we’ll have more expansive conversations after that,
but it’s just a launching pad for us to,

to land in this space together.

So, next slide please.

So as, Moira already, beautifully said,

there’s an explanation here that includes 
sex characteristics and the explanations.

The list there around what
makes up a person’s primary

sex characteristics we all have.
Ans then so, as Moira said, those

variations can be considered outside of normal.
And there’s a list at the top there of,

of different variations.
Not all of them, but some of them.

And the most important thing, I think,
to say is that sex variations are naturally occurring.

And many like old religions and indigenous
groups have terms for intersex.

So while we might be 
using this term which has a

medical whakapapa and has been reclaimed 
sort of in the 90s by intersex activists,

it’s important that we think about all the 
different paths that have led us to this point.

And I read just the other day there’s 
been a recent discovery in archaeology of

a 900-year-old Viking in Sweden with
hypospadias. So, you know, I think,

this isn’t necessarily a new conversation 
but interestingly enough, I think,

because of our more recent history
for the past 70 to 100 years of medicalisation,

it is a new for a lot of us.
So, it’s great to be here and

talking about this and learning together.
And as Moira said terminology,

we choose to use the term ‘variations’, 
rather than some of the more diagnostic

terms, rather than ‘condition’ or ‘disorder’ 
or ‘defect’ as you might have heard it

in healthcare settings or texts.
Next slide please.

So, if intersex is a natural occurrence,
what then is normal?

The cool thing is within your family or whānau 
you get to paint a new world for your tamariki.

And I think we could all benefit from
reconsidering what normal is.

So, natural variations of sex 
characteristics is sitting around

1.7 to 4% of the global population.
In Aotearoa, that is over 80,000 people

yet we still don’t really know how to talk 
about it and maybe who to talk about it with.

I think again this is an invitation for us to 
create a new normal to reconsider what is normal.

And we can do that through connecting, 
reading resources, and educating ourselves

to upskill yourself and those around you.
And I look at it this way,

intersex bodies are a gift that release us
from these impossible constraints

of what is considered normal.
Next slide please.

So, of course being a parent with 
a child with intersex variations,

there’s a bit of responsibility there.
And as you know, as a parent or carer

of a child, you are your child’s advocate.
This might be overwhelming at times to find

the right advice or pathways.
I know that I, as an adult, still

find it intimidating in some healthcare settings.
You know, trying to find the right terminology

to express what I mean, and all the
health literacy challenges that we come across.

But we all deserve supportive 
healthcare services.

The most important thing I
can suggest is take your time.

Unless there’s a medical emergency, 
most intersex variations,

are not at all life threatening
so feel free to slow down.

And as part of that, ask questions.
Ask for a second opinion, especially as your

tamariki can’t advocate for themselves.
And get a range of perspectives.

So, that might look like connecting with 
other parents that might have a child with

a variation of sex characteristics or reach out 
to a support organisation like Intersex Aotearoa,

connect with intersex adults.
Next slide please.

And why is it that we don’t know much, 
if anything, about these natural variations.

So, as I spoke about before, the 
medical model has been around since

the, the 1950s, but earlier than that, 
in the 20s, I think, post war we saw,

this, new surgical techniques 
influencing some of their approaches.

And that approach is based
on what is called a Concealment Model.

So this has meant that there’s been 
a culture of “you don’t have to talk about it,

and we can make variant 
bodies not look different”.

And what that has left us with is a
harmful culture of shame and silence.

And we know that, even those
young people that might not go through

surgical interventions experience harm from
the impacts of not talking about these things.

So, it’s really important as parents 
to understand the complexity of your

child’s particular variation, for sure.
It’s also important to define what might

be considered to be a genuine health issue
relating to that variation.

And then differentiate that between what might 
be a social issue and then of course what the

immediate needs of your child is.
So, are they happy?

Are they healthy?
Not talking about

something doesn’t make it go away.
As your child grows, they will naturally

try to understand themselves and
how they fit into the world around them.

This is easier if you’ve already 
found ways to discuss it as a family.

And children deserve privacy 
as much as adults, right?

But how do we untangle those differences 
between what privacy is from that shame

and secrecy that we might have consciously
or unconsciously absorbed about variant bodies?

And it’s kind of clear as the theme of this
presentation, communication is the key.

So, talk your tamariki
in a way that works for them.

Next slide please.

Relationships and communication.

One thing we know is a major issue
for intersex young people

and whānau is the lack of talking about it.
From the contact that we have with community,

we actually know that for lots of people
who have intersex variations

they’re only talking about it with their healthcare 
professionals or maybe one or two people,

could be a friend, could be a family member.
That’s a pretty lonely place to be.

So, you know, one thing is to 
think of terminology as a tool.

So, where I talked about my variation,

I’ve got this acronym that I can’t even 
pronounce, but, what it is is a tool for me.

I can go online and find a support group 
that relates to that particular variation.

And then another tool that I found is the 
umbrella term ‘intersex’ that connected me to

this wider umbrella of all these other people
that have been through a similar experience to me.

And that can be really powerful, and I would
highly recommend it to families as well.

So, maybe what we could
talk about is, is how to get there.

Maybe you’re not quite ready for that,
but taking time to practice as a family,

the right way to language your
child’s sex variation is a great idea.

So, maybe when they’re little start small, 
share positive references to different bodies.

As they grow more verbal, you might chat about 
bodies and how they can be different or the same.

And once you get more comfortable,
you could extend that to external networks

to model language for your whānau and friends.
And whoever it is that you are talking to,

make it happen.
So I also wanted to note, in terms of the

shapes on the slide, they’re all the
same size. That’s intentional.

So, it’s really important not to prioritise 
one mode of support over the other.

And you know, often the healthcare 
model is the dominant model.

So, balancing that, making sure that your 
child has access to appropriate healthcare,

but at the same time that 
you all need,support.

That little yellow circle in the middle
is the most important.

Next slide please.

So, support, as I was just saying, parents and
caregivers you deserve support too.

But we need to manage and balance this,
the needs of you and then the needs of the child.

And these will, of course, change
and evolve over time.

So, understanding what is yours, 
what feelings whether they may

be those fears or unconscious or conscious bias 
or, you know, the absorbed stigma and shame.

And getting the support you
need to work through them.

But also remembering this 
isn’t necessarily about you.

Lots of parents we talk to hold guilt, and this can
really shadow the experience for the child.

Your child’s needs for support 
will change and evolve over time

and understanding what they need and what this 
support looks like to them is most important.

Support for them might be as simple as
you not being so uptight about it.

Support for them might
look like you talking to a therapist

or finding different therapeutic supports
that help you process your feelings as a parent.

Support for them might be they might like to 
meet another person with a variation one day.

Next slide.

Affirmation.

So how we talk about bodies 
will be mirrored by your child.

How do you talk about
your own body within your whānau?

Model positive body
language with each other.

Your child doesn’t have to have extra 
attention or pointed out as ‘special’.

Make sure you’re celebrating 
all bodies within your family.

So, you know, all bodies are beautiful.
All our bodies are different and special.

Different is cool.
You are perfect just the way you are.

And intersex is taonga.

Next slide please.
Oh, look at that. That flew by!

So we’re obviously going to
have more discussion now, but

I just wanted to take this moment to say 
please reach out if you want to connect.

If maybe you don’t come up with
a question right now, but think of one,

in the next weeks or days or months, 
please email us for a chat or,

yeah, with any concerns or queries 
you have, that’s most welcome. Thanks team.

Joey: That was beautiful Jelly.

Jelly: Thanks.

Joey: Not only are your slides beautiful,
but I feel like

your message is very clear and on point.

Jelly: Cool. That’s good.
Whew! [laughter].

Joey: Yep, We’ve come up with a number of
questions and, yeah, please send them through

if you have them as audience members
as well. I wanted to say to Jelly that I really

think there’s a similarity in terms of any
whānau or parent or caregiver needing to

have a supportive processes for themselves
as part of loving and caring for their child, right.

And this is true if you have a kid with 
variation sex characteristics, or true if

you have a kid that’s doing gender differently,
or true if you have a kid who’s whatever, whatever,

it’s so important for our parents and caregivers
and whānau to know that their

feelings and their experiences are valid.
And also, what I heard you saying was like

find the support that you need and be part
of the range of different options that exist,

that, there should be more obviously, but 
that exist for parents and whānau and then

also young people and adults,
intersex adults as well as young people, like,

that you don’t have to expect that this 
will be something you hold by yourself.

Or something that you can only talk to,
say you’re co-parenting with another person that you

get only to talk to that one other person or
only talk to the doctor about or only, you know, then

your child might be someone you end up getting 
support from about this when actually they’re at

the centre of that with their own needs.
Which might be quite different

to the parents needs.
And,where do the child’s needs end up?

Kind of being pushed to the side maybe,
if the parents needs get prioritised

all the time if they don’t get their own path.
You know, it’s like everyone needs

their own path.

Jelly: Mmmmm.

Joey: So, I really appreciated that.
I do a lot as a trans person I

do a lot of trying to figure out the 
differences and similarities between,

being a young person who’s trans or being a young
person who’s intersex and what that’s like.

And I think there’s a lot of 
similarity there for a lot of us.

But it also is quite different.
Like, that concealment, that medical model of

concealment, can you tell us any more about that?
Like about the concealment versus privacy?

Like, cause you’re not saying 
“shout it from the rooftops.

Let it all hang out, whatever, 
whatever, who cares?”.

You’re saying “no, privacy is really important”.
But what’s the difference?

Could you say more about a medical model that’s 
doing concealment versus what you’re advocating

which more about privacy.

Jelly: Mmmm. Yeah.
Thanks for that Joey.

And I just wanted to say as I was listening
to you speak thinking about,

those parallels and differences 
we might see in young people.

And you know I think, if we’ve got really
young people with intersex variations

and then we’ve got a really
concerned parent who’s going “oh I need to

really talk about this with my kid”.
And the kid’s like “this is boring…

I want to read a book about dinosaurs”.
You know, we might see,

some sort of disconnect in stages
as that young person grows older.

Maybe their feelings start growing stronger, 
and, you know, as the parent might be,

more conditioned to their,

to their feelings.
And so maybe that’s complementary.

But, I think, yeah, talking about
that sort of evolution of,

lots of young people don’t really... 
like really young people don’t really care.

They’re happy.
They’re like,

they’re embodied in their experience.
They’re like “cool, I can climb this tree.

That’s great, my body does 
the thing I need it to do”.

You know, and then, and it might be
that those needs change over time.

So, I just was reflecting 
while you were speaking.

But yeah, the idea around, I think, 
the responsibility of, for family and carers,

around privacy is, again, that’s gonna be evolving
depending on the young persons needs.

They might be totally happy to be educating 
their friends, whānau and skipping around,

being like “my body’s different”.
You know like “that makes me cool”.

Or that young person might a year later be like
“I don’t wanna talk about this with anyone.

No thanks. I don’t even wanna talk
about it with my parents, ugh”.

But I think trusting that you’ll know what to do
at that time is really important.

Not getting overwhelmed 
with the future.

But actually just reacting in relationship
with your young person.

And letting them somewhat lead that.
It’s not putting responsibility on them

to tell you what to do but for you to be 
able to respond to where they’re signalling

and how they’re doing that.
And that’s empowerment, I think, where

we’ve got a concealment model, a history 
of saying “we’re gonna protect your child,

by making it not a problem for them.
By erasing the physical

reality and also not, not giving them any tools 
to language what that difference might be”.

And it doesn’t work.
You know, it’s still there.

We can remove all those things.
We can not give them any verbal tools.

We can do all the operations.
And you know, people talk about

doing it at an age where kids can’t remember 
but we know that our bodies remember.

And so, rather than those concealment models 
that I do believe have the best intentions at

heart, you know, we’ve got the evidence
to show that actually a model that

is about empowerment and bodily autonomy 
and informed consent and all those wonderful

things that we all want for ourselves.
I think, we now know that we can actually find

a balance for all that stuff, without putting 
too much responsibility or onus on the young

person or the doctor or you know, and really
just thinking about it as a collaborative process.

Joey: Mmmm.

Jelly: Yeah.

Joey: Yeah, and privacy as a thing where you’re 
centring the young persons needs at any given

moment and knowing it’ll change over time.
So, it’s not saying

“never talk about it, always talk about”.
It’s not making rules that are hard and fast

like that but saying “ok, I’m gonna respond as 
someone who loves this young person to whatever’s

going on for them at that time”.
Which seems to be a lot of what

parenting, [laughter], my friends who are parents,
that’s generally what I see them doing.

Like, struggling to catch up sometimes,
but often being like “ok, I’m in this phase now”,

“ok, now, now we’re doing this, alright”.
And trying to always figure out how to,

how to be there with their kid.

Jelly: Yeah. Hey, nice chucking in
of the ‘be there’.

Joey: Be There with your kid [laughter].

Jelly: [Laughter] yeah… It’s

Joey: Moira… Sorry Jelly. Moira did you have
anything? I saw you nodding at a few points there.

Moira: Yeah, nodding at all sorts of points.
I was thinking a bit about the same point

in your presentation Jelly about the support needs
of parents and young people. And one question

that came to mind is wondering what parents
can do with their feelings [laughter].

Like you know we talked about the 
importance of not necessarily always

bringing that to your kid to have educate
you or to have to kind of

talk about it if it’s not the conversation
they’re wanting to have at the time.

But, wondering what support options there might be
for parents who are trying to make sense of

things or having a bit of a hard time.

Jelly: Yeah, I mean, I think what we hear mostly from
parents and carers is really wanting to end that

isolation for themselves in terms of, there’s not
heaps of resources just immediately there.

You might not get them
from the healthcare setting.

They might be able to tell you what the 
medical pathways are, but not necessarily like,

what those emotional pathways are.
So there are, you know options like,

the wonderful world of the internet, and 
jumping on, like, there’s a Facebook page,

‘Parents of Intersex Children’ I think 
it’s called but we can put the link into

the chat if you’re not already connected.
And that’s an international group.

And then of course there’s 
more informal networks,

grapevines that I know exist in Aotearoa where
people have... you know, the need’s been

so strong to connect with others that
they’ve forged those pathways themselves.

And as an organisation we have so many 
aspirations to be able to have a future where

we’re providing or supporting facilitation of
peer support for young people, parents

and whānau, in different variation groups or
the sort of cultural, intersections

as well that are so important in Aotearoa.
So, yeah I’m also saying watch this

space then because we’re hoping in the next 
couple of years to develop that more and more.

But immediately, if anyone does need to 
connect you can email us and we can,

we can make sure that we can 
find different ways do that.

Even if, I mean, the things that make a 
difference, I think, is just like having someone

that says, “I get it”.
You know?

Joey: Yeah.

Jelly: Yeah.

Joey: We have a related question, as well, 
from the audience which I could pop in

here cause it’s a really helpful question.
How can we encourage medical professions to

share the details about how people could connect?
So, if you are a parent of an intersex baby or

newly diagnosed with a variation, a kid
in your family and you’re looking for support.

Obviously, you’ve mentioned the Facebook
group parent support for intersex, that’s great,

and you’ve mentioned Intersex Aotearoa, 
but apart from that, the support mechanisms

themselves or what the organisations are, what can 
we do to get medical professionals to recognise

the importance of that piece?

Jelly: Yeah.

Joey: Should we just keep telling them?
[Laughter].

Jelly: Yeah, I think yup, it is gonna
have to be a collaborative process.

You know, we’ve got a pretty stretched 
national healthcare system for sure.

But we also deserve better.
We’re not, we don’t get

referrals through any formal pathways, 
despite sharing information.

Starship has done a bit of work with us over 
the years, specifically with Mani Bruce Mitchell,

and yet still we don’t necessarily
hear from people.

And what we do hear is parents, who have had 
children in the last couple of months who’ve been

told there’s no where for them to go.
So you know, it’s not...

there’s sometimes there’s these ideas
that like “oh we did things

badly in the past but we’re so much better now”.
Where we actually know that if that’s one of

the primary concerns of families is like
“I need to be in touch with other people”, then

what a better conduit for that, 
but, in healthcare settings.

So, yeah, again,
there’s work happening.

We’ve got a Budget from our government
that's saying in the next

four years there’ll be better training and 
resources made for medical professionals.

We’ve also got people like Denise Steers who’ve
been making resources for parents and

caregivers, also secretly for the doctors to
read, you know, and reflect on as they

hopefully use those resources with parents.
And they are full of similar

support groups and contacts that we’ve
been talking about here.

So we’ll definitely see changes.
They might not be as fast as we’d like them to be,

but they are happening.
Yeah.

Joey: That’s what I was gonna say too
that I think it’s what can be done as it often

feels like a really small steps but actually 
cumulatively, we get there with some change,

we get there with some movement.
Like, I think Intersex Aotearoa

and Te Ngākau Kahukura will be collaborating 
on some further webinars particularly for

health professionals and medical students, 
later this year and early next year.

So, you know, it’s not like one or two or three 
webinars will fix everything, but the more access

we get to talk directly to clinicians,
health professionals, anyone in that healthcare

provision space, the more we do share this
kind of message to say actually there’s a lot of,

a lot of unmet need for social connection 
and for that to be part of this picture.

It’s a necessary part.
We’re not saying that the

medical stuff is not important as well, 
but you can’t just only have that.

You gotta have some other aspects 
of support and pathways that work

for people.

Moira: Mmmm.
And some of that,

in terms of what doctors need to know is
not necessarily, like it’s not hard,

it’s not rocket science or expensive or difficult
necessarily. It’s just being able to bridge

conversations with different sectors outside of
the medical establishment, eh, which

can be a bit challenging, sometimes.

Jelly: Yeah. Yeah, I think you’ve both 
brought up sort of that idea of like,

there’s been pretty firm silos around,

the sort of compartmentalisation of humans.
And you know, we talk about this thing here

and then we don’t connect it to this bit 
of work that people are doing over here.

And I really wanna say that we’ve got
such an interest and passion of,

about collaborating and changing
those silos and working together.

And we know internationally, 
there’s more warmth around

medical spaces using multi-disciplinary
teams and making sure that there’s

actually therapeutic positions within some of
those departments, so that parents and

in that immediate diagnosis time with a 
young, with a very young infant for example.

Lots of these chats
get really focussed on infants.

And that’s where we have to accept that’s
sitting at the moment in terms of where

the change will probably happen.
But I do wanna acknowledge that

there’s all stages of life where diagnosis 
can happen, and everyone deserves support.

So there might be around some of
those immediate diagnostic

moments that there’ll be better equipped 
staff within those healthcare settings.

But yeah, also having lots of different approaches,
eh, and not just one is,

is gonna be the way
that real change happens.

Joey: Mmm.
Mmm.Mmm.

I know from doing work with nursing school
programs and then seeing nurses in the

workforce as well over a number of years lately, 
particularly in relation to trans stuff but kind

of also broadly rainbow stuff, that often the
content that’s this kind of level of like,

you know, bodies are bodies and humans are 
humans and could we all just be a bit more,

a bit more chill and a bit more respectful
and a bit more responsive.

That has come through on a social level rather 
than from a curriculum level and sometimes

that means the students are really leading the 
discussion and leading the way and the lecturers

are trying to catch up.
Sometimes they’re onto it,

but sometimes they’re like “oh right,
that’s a different model of,

talking about bodies and talking about humans” 
than they had when they were being trained.

And that’s hopeful, you know, cause even if it’s
hard for us to get in and make the curriculum

better which a lot of us are working on and 
trying to do as part of this whole big picture,

there’s still a shift happening cause when the
shift happens in community

and in social context, that comes in.
It’s just maybe slower than we would

like, but it’s still valid and helpful.

Jelly: Yeah absolutely.
And best of luck to students coming into

those cultures that, you know, might still be stuck
in different generational perspectives.

And we know those spaces 
can be really hierarchical.

So, yeah. But again, yeah, 
I totally agree there’s hope.

There’s definitely hope there.
Yeah.

Joey: I liked what you said about
wanting parents to get strongly a sense of,

like feel free to slow down.
A sense of take some space and some

time when you’re making decisions particularly 
about medical or healthcare stuff for your child.

Like, sure if there is some kind of medical 
emergency then, and my understanding is

that it might’ve been framed as a medical 
emergency in some contexts which wasn’t true.

So, then of course that’s really a stressful 
place to be as a parent if you are being

given the impression that this something 
that needs to be immediately fixed rather

than actually something you could take time
to do more research and have more conversations

and sit with your own process and talk to other
whānau who you’re close to and feel trust with.

Is there anything you wanted to add about 
that kind of ‘take your time’ message?

Jelly: Yeah, it sounds simply, eh, but I think, 
that’s been hard won by those of us that

didn’t have that opportunity, or our parents
didn’t have the opportunity.

Or like there was no access to any
other alternative or resources.

So yeah, it’s, getting a diagnosis whatever 
age your child is is scary and overwhelming.

And so, if something’s being framed in a
health context, and it’s got that,

it’s got that weight to it but someone’s offering 
this solution at the same time, of course,

what an opportunity, thank God.
You know, and so, it’s really,

it’s difficult cause there’s... I have no sense of blame
on anyone put in that position of having

to make that call when of course that’s with
the intention of care and love and the best…

Joey: Absolutely.

Jelly: And some of that health literacy stuff
we talk about is, it’s resisting that

intimidation of that moment where
someone’s using language that you don’t

quite understand but you’re in a hospital so it
must be bad [laughter], you know, of actually

just saying, you know, “thanks so much.
I’m gonna take some time and go and talk

to some people, can you tell me at this
immediate moment whether my child’s at risk

of harm?” And if it’s a no, then great.
Let's just go and take

a breath, you know.
Stand in the carpark.

Count to ten whatever it is that you need to do.
And I think we’re hearing more and more,

that... because we’re hearing from parents
who’ve said “oh I got told this horrible

thing but I’m over here and I found you and
I found other parents”, you know, they’re

showing us that there is more information
out there for people to be like “hey,

I think I’ve heard about this and maybe it’s not 
so bad and we should go do some more research”.

Yeah.

Joey: Mmmm. We're amazingly almost at the point
where we’re gonna be doing our wrap up thoughts

and pointing to all of the resources 
that we want people to connect with.

I thought I would let Moira have a moment, 
share any thought, comment, question

if you feel like it at this time?

Moira: I’m not sure if it’s a question or a thought.
I’ll start talking and

we’ll see where we get to [laughter].
But I was just reflecting on your,

you had a point in your slides Jelly, about 
your child is a taonga and I know that had a,

you developed a resource for parents a while
ago that had that same title as well.

And I really love that sense of like, 
a lot of what we’re talking about is,

support or some sense of like difficulty or stress
around your child being born with...

slightly different to how you might’ve expected.
But actually, it’s not just about

you know, support around a problem, right.
It’s also about how do we celebrate,

difference and how do we celebrate our 
young people for who they are and, yeah,

I really love that sense of this being a
taonga, of this being something really special.

And it’s, yeah, a difference but not
necessarily a problem.

I guess I wanted to shout out in terms of 
like you talked about the internet as

a source of support and things as well.
I feel like one of the things

I found really interesting and helpful is
actually YouTube and Instagram in terms

of people sharing their own personal stories
and there’s a lot of

a lot of intersex people, a lot of people coming
from different perspectives who are kind

of sharing about their life in a way that 
just makes sort of possibility

more visible for kids growing up.
You know, I think being able to see

different examples of what people
look like and how people live

as you grow up can be a 
really positive part of that as well.

I’m not sure if that’s a question.
That’s just a general reflection

I guess too, is to not to forget that,
as we’re talking about this that we’re not,

we’re not talking about a problem
that you need to solve.

We’re talking about young people who are
an important, beautiful part of your family

who we wanna celebrate.

Jelly: Thanks Moira. That’s so nice, and yeah, it’s
one of the more sort of challenging things of this

work is we spend so much time sort of rallying 
against the difficulties of the systems.

But don’t always have the time to actually just
do that celebration stuff that,

that joy that difference brings.
And I genuinely think that

that people with intersex variations are a gift.
And we actually open up

infinite possibilities of embodiment.
But also, the perspective that gets you

you know, in like
“I’m great! I’m ok! I love my body!”.

You know, and you can have that
same trust for your child.

And it’s so nice to land on this point,

as we sort of are thinking about
closing up this because

so much of the way that caring for someone else
can manifest as in concern,

and that's so valid.
But when that sort of

gets twisted in protection and gets all tight,
that can hinder

some of that development stuff 
that we want for our young people.

So, I think, yeah, just trusting that they’re
gonna be ok and you’re

working on this together as you go.
You don’t have to be an expert.

You don’t have to know everything but,
yeah, like Moira said, there’s heaps of really great,

and beautiful people out there sharing just
their stories and their lives and

their journey and learnings.
Which is so generous right?

And there’s so much evidence of the abundance
of joy and, and some of that affirmative

treasure stuff that we all need and love.

Joey: Some that treasure is very located
in you and around you, Jelly.

I happened to notice.
So, I strongly appreciate your

you know, I know you’re bringing a lot of 
people with you, it’s not you individually.

The whole thing, so, thank you. Thank you in 
particular and also thanks to everyone at Intersex

Aotearoa who’s feeding into all of this work.
You are doing massive amounts of work

and we have huge amounts of respect
for what you have been doing.

And look forward to all these ongoing 
collaborations like we’ve been talking about.

That does feel like a good place
to wrap up on, right?

Jelly: Yeah, and I’ll just say, yeah, awhi to all the 
intersex people who have taught me so much and

shared their stories with me and parents too.
Definitely on the shoulders of giants as they say.

Joey: Mmmm. Possibilities, right?
Feeling like it’s less

about having the exact answer, and more 
about seeing that there are possibilities,

that there have been possibilities
and there are possibilities in the future.

Thank you.
So, I think

Jono will be posting into the chat some links and
context for you to get in touch with us.

You can do that through our website, Te Ngākau 
Kahukura website, or you can do that through the

Be There website.
You can also,

contact Jelly and Intersex Aotearoa more broadly
on the info email that’s in the chat.

We also will be in touch with an 
evaluation survey about this webinar.

And it is always really heartening for us 
if anybody takes a moment, even just to say,

“thanks I enjoyed that”.
You know, you can give us

really indepth feedback if you’d like.
You can go as hard as you like with your

evaluation of our educational material.
But also just feel free to respond

and say as much or as little as you’d like
in the evaluation survey that will

go out to all of the people
who've registered for this.

Any other resources that I was gonna mention?
There’s a whole lot of links up on the

Be There website which I know 
you’ve been sent the link to.

I would like to maybe close 
before Moira closes with karakia.

I think the whakataukī that we
were gifted from

Dr. Elizabeth Kerekere to Te Ngākau Kahukura, 
is really extremely relevant and

I believe that Elizabeth was with us today
in the audience, and sending out love

to you, Elizabeth, for your support in our mahi.
The whakataukī is kia puāwai, me puāwai.

And I’m thinking this is pretty broad for our 
young people, rainbow people, intersex people,

to thrive, we must grow, we must do the work.
And that’s what this webinar is about too.

We are doing the work and we are hoping
that we can all do the work together

and then the work is not so overwhelming 
and terrifying as it sometimes can feel.

Ok, I will stop talking.
I will hand to Moira to close.

Jelly, do you have any last thoughts?

Jelly: Just thanks.
Always awesome

talking with you both and thanks to 
everyone that came along today or will watch

this in the future.

Moira: Kia ora. Well, thanks Jelly for everything
you’ve shared, your wisdom.

Thanks Joey, thanks Elizabeth, 
thanks Jono in the chat.

I’ll share my screen.
We’ve just got a couple of slides to share.

Some links around extra resources 
if you want to read or listen to or watch

something else following on from this.
The Be There website itself has a

page up there of resources for supporting
intersex children and young people including

that one that I mentioned that Jelly developed
a couple of years ago, ‘Your Child is a Taonga’.

And as part of the Be There campaign or project
as well, also running a

series of workshops for kind of more broadly 
parents and whānau of rainbow young people.

Those are more interactive.
So, there’s like 20 people in each

session and there’ll be more of a chance for 
people to share more of their own

story and ask questions of the facilitators, the 
team from InsideOUT will be running those ones.

So, if you’re interested in those 
and available on those dates,

they’re up on the screen now as well.
But, that’s all from me.

Just thank you so much everybody for being 
here and for those of you who might watch

this in the future as a recording.
And I’ll just close us as we opened

with a karakia.
Me karakia tātou.

Unuhia, unuhia,
Unuhia ki te uru tapu nui

Kia wātea, kia māmā
Te ngākau, te tinana

Te wairua i te ara takatā
Koia rā e rongo

Whakairia ake ki runga
Kia tina, tina

Hui ē, taiki ē

Kia ora!
Thanks everybody.