Ellie Cole's Couch: Amplify your inclusion

Ellie: Christine, thank you so much
for coming in today.

I hope you're excited for our chat
and get to know each other.

Christine: Yep, I am, yeah.

Ellie: So tell us a little bit about yourself.

Christine: Yep. Christine, I'm the Business Manager
for the New England region.

So rural being Armidale up to Tenterfield,

over to Inverell, down to Walcha
and everything in between.

And I'm 54 years old.

Ellie: Well I've only heard of one
of those places before and that's Armidale.

You flew in from Armidale this morning?

Christine: Last night.
Ellie: Last night.

Ellie: What's it like living out there?

Christine: I was born and bred there.

I did move away for roughly about eight,
nine years.

I had to move north
with my disabled daughter

for warmer weather,
and then eventually went back home.

Ellie: And what was it like growing up there?

Christine: We were out in the dirt.

We didn't have computers or
anything like that.

It was mainly just outside,
you know, you bred your own chooks,

absolutely everything, grew your own vegetables.

You're out doing gymnastics on the front lawn.
Ellie: Yeah.

Christine: Riding a pushbike and that.

So growing up, it was amazing.

Ellie: Sounds like an idyllic childhood, really.

Christine: Yeah.

Ellie: And I can see your face light up
when you're reminiscing about it as well.

Ellie: Do you have chickens now?
Christine: No.

Ellie: Do you have any, like,
kind of land out there?

I'm assuming that a lot of people,

I'm just making assumptions here,
that a lot of people that live out

in rural areas tend to have a little bit
more land than what we would in Sydney.

Christine: The yards are big.
Ellie: Yeah.

Christine: But unless you're sort of, kind of,
on the outskirts and owning properties

and that sort of stuff.

Yeah, but the big old homes
that are there, they have massive yards.

Ellie: Yeah. Nice. Maybe I'll move there.

It seems like you had a lot of
positive family influence growing up.

Christine: Yes. So, I'm the baby of eight.

Ellie: Oh, really? Wow.
Christine: Yes.

Ellie: The smallest of eight.

Christine: Yes, the baby of eight.

Ellie: Yeah. What was that
like, growing up with eight siblings?

So, you had ten people
living in your house?

Christine: It was adventurous, I could say that much.

When one got into trouble,
everyone got into trouble.

Ellie: It's probably easier for your parents
to have everyone in trouble

than try to find out
who did it out of eight different kids.

Christine: Yeah, that's exactly right. Yeah.

Ellie: And the wonderful thing
about having a lot of siblings as well

is that I'm sure, and particularly
being the youngest,

you had a really good influence
from your older siblings, and I'm sure

each of them having different
personalities would have taught you

so much about working
with different people, right?

Christine: It does, and it also, you know, you put
your heart and soul into your work.

We were taught, you know, growing up
that when you're in employment

and things like that,
you dedicate yourself to it.

You know, you work hard
and if you work hard in life then

you'll achieve what you need to achieve.

Ellie: And it sounds like you've got
an amazing work ethic.

Christine: Yeah.

But you live in a great area
as well to relax, by the sounds of it too.

Christine: Yeah, yeah.

Ellie: So, you mentioned that you had a daughter that had a disability.
Christine: Yes.

Ellie: And do you have any other kids?

Christine: I have a 27 year old.

Ellie: Two kids?

Christine: Yes, yeah.
Ellie: Yeah.

And what was that like?

Christine: Look, to be honest, I had my first daughter,
and absolutely amazing.

I ended up having, when I had my second daughter,
she was born premature at 26 weeks, 6 days.

So she was in the Royal Randwick
Women's Hospital for quite some time.

She was diagnosed with
Chromosome Ring 22.

And then she also had Cerebral Palsy.

Ellie: So from premature birth?
Christine: Yes. Yeah.

As she grew up, I don't know,

I think it was mother's intuition. I just,
I knew something wasn't right.

And then, you know,
she started fitting, having major epilepsy,

and stuff like that,
being in hospital all the time.

You could say maybe three days a week

if I went and picked my other daughter
up, I'd have to stop at the hospital

and have her rescued
from having a seizure.

She was non-verbal,
all that sort of stuff.

But then she went in to have leg surgery,

and during the leg surgery,
she had a stroke.

And we were up in Brisbane at this time,

and we spent eight
and a half months in hospital,

and we found out - it was two days prior
to the Christmas before she passed away -

that she had a condition called
Phelan-McDermid Syndrome 22q13 deletion.

So, what we found out is her organs
and that went into regression,

and her body just shut down,

her seizures ended up
a thousand times worse.

And then I took her home to be with family,
to spend a bit of time with her.

And then, on May the 12th, the year after,
she passed away.

So. Yeah.

Ellie: And, her passing,
was that attributed to the new

syndrome that she was diagnosed with,
with the organ regression?

Christine: Yes. Yeah.
Ellie: So effectively organ failure?

Christine: So, they do say that, you know, it can be
something like pain that can trigger it.

And obviously she, you know she
had both ankles done

and she was in a lot of pain,
and she just didn't come back from it.

Ellie: If we go back to when she was born,
she was born at 26 weeks.

Yeah.

What was that experience like for you
going into the hospital knowing,

hold on, she's not supposed to
be born for another few months?

I know a lot of people who have
been born prematurely

being on the Paralympic team.
Yeah.

And I know that, you know, in 2024,

the experience of having a premature
child is so different than how it was.

But, I'm not sure what year she was born in,
but what was the experience like for you?

Christine: The experience knowing
that she was coming was frightening.

But I also knew as long as I stayed

strong, then hopefully she'd
pull through as well.

Ellie: And how did you find you dealt with
that experience emotionally,

because going into something like that,
there are so many unanswered questions

it can be really hard to navigate,
I'm sure.

Christine: All I could do was go with it.

Ellie: Yeah, yeah, absolutely.

And, what was she like when
she was growing up?

Christine: Gorgeous. Cheeky. Mischievous, into everything.

So she she couldn't walk.

But she did crawl.

She could pull herself up to stand.

Verbally, she only had a few words like mum.

And, you know, we used to do a bit of sign
language with her,

but we also got to know her to the stage
where we knew what she wanted.

Ellie: Yeah.

Christine: Just, yeah, really mischievous.

Ellie: You had a real
mother's intuition, hey?

What's your favourite memory of her if you think?

Christine: She used to go into her sister's bedroom,

and she loved really loud banging,
heavy metal music,

and my daughter would have the music on
and she'd stand up at the stereos

and literally stand there
and just banging her head 24-7,

but then all of a sudden,
the stereo would smash because

she's holding on to it like banging her
head and, things like that.

So, even though she was only ten
and ten months

when she passed, she did get to live her
teenage years through my other daughter.

Ellie: Yeah.
Christine: And her friends.

So. Yeah.

Ellie: And, she sounds very, very cheeky.

Christine: Yes, yes.

Ellie: How did her passing affect your family

and especially your other daughter
who was older at the time?

Christine: Yeah.

It's...well, I'll just be honest,

I was, because I was with her
for the eight and a half months.

They tried to prepare me for the outcome.

I don't think anything will ever
prepare you for an outcome.

When I did take her home,

I sat with what they called
the Robyn Team, and there was a specialist

from the Phelan-McDermid Syndrome team there,
and they explained it all to me.

And it was, I had already signed a
“do not resuscitate”, because of the seizures.

And it was at that stage
where I had two choices, and that was to

keep her up there in Brisbane Hospital
or to take her home to be with family.

So, we took her home.
I took her home.

I took home on Valentine's Day
that year, and surprised her sister.

And then pretty
much just had to explain it to them.

And I don't think you are ever ready
for anything like that.

I think, you know, you've got to make
the right calls.

It was devastating.
It devastated everyone.

Ellie: It must be so difficult
to get to the point

of having to make a decision like that.

Christine: I would never wish it on anyone,
to be honest.

There's an old saying that, you know,
when you lose a partner,

you're a widow or widower.

When you lose a parent,
you become an orphan.

But when you lose a child,
there's actually no words for it.

The pain is horrendous. Yeah.

Ellie: Absolutely.

I can't, I can only imagine.

Christine: Did I doubt myself as a mum
after it happened?

Yeah, definitely.

I didn't believe that I did everything in my power
that I could do to help her.

But after a while, I knew I did.

Ellie: If you look at yourself as a person before
you became a mum, and then if you

look at yourself after going
through an experience of losing a child.

Christine: Yeah.

Ellie: How do you think that has shaped you now?

And given you have a different perspective
into things?

Christine: Yep. It has shaped me.

For the first 12 months
after my daughter passed away,

I hated everything in life,
and I mean everything.

I threw myself into work, working 24-7,

I never focused on what had happened,

and then around the 12 month mark,
I did have a total meltdown.

Total breakdown.

And then I just one day, I just sat there

and I just thought to myself,
I can either make good out of this,

or I can make it bad.

But I also knew in my heart
that she would want me

to keep going and help people
the way I helped her.

And that's why I do what I do.

Ellie: So that's why you've entered into your
role now at APM, is to help other people?

Christine: Yeah.
Ellie: That's amazing.
Christine: Yeah.

Ellie: So how long have you been
working at APM for?

Christine: Four years.

So, two years as an employment consultant and coming up
to all but two years as a business manager.

Ellie: So what do you love most about your role?

Christine: I'm going to have to say the participants.

Ellie: Yeah?
Christine: Yeah.

I love sitting there and I love listening
to what they have to say.

But I also like to try and -
I’m a bit of a brainstormer,

I like to be able to help them achieve
what they want to achieve.

So, if it's a little step,
like getting counselling,

help them find the counselling service.

If it's the little step of,
you know, they need help doing a résumé

or they just want to sit

and have a day-to-day conversation
about what they would like to do

and how do they do it,
then that's what it's about.

Ellie: I think when people think of employment,
they think of going from point A to point B.

Yeah, but it's not like that, is it?

Christine: No, it's not, it's not.

It's about having an open mind.

And you know, you might say for instance,
have a mum who's never worked, okay.

She's just been a mum.

But you've got to really look
at those transferable skills,

you know, you think about what
a mum does on a day-to-day basis.

I know what I did as a mum.

You know, a dad,
he might have been a stay-at-home dad.

What did he do?

Can we use those sort of things
to try and use those transferable skills

to find that perfect employment
opportunity for them?

Ellie: Do you live with the disability yourself?

Christine: I do, yes.

Ellie: Tell me what that's like.

Christine: So, I've actually had a laminectomy
on my left side of my spine.

Ellie: Laminectomy?
Christine: The removal of the C6, C7.

Ellie: Okay.
Christine: Yeah.

So having Chloe, growing up,
she used to fall asleep on the floor,

I picked her up, she was about,

I don’t know, about roughly 58 kilos.

I picked her up, and as I've picked her
up, I lost the feeling in my legs,

and her body weight
fell back on me.

And I smashed the C6, C7.

So, in 2018 the neurosurgeons

decided that they’d operate because,

to be honest,
you know, I'm on a lot of painkillers,

to control the nervous system
and the pressure.

So I had the surgery in 2018 and have a lot
of weakness on the left hand side.

About 18 months ago,
I was diagnosed with Raynaud's,

where my blood cells don't open up
enough, so ended up being having treatment

for that, and ended up in hospital
having an infusion of iloprost

to open up the smaller blood cells to make
the blood pump and that sort of stuff.

Otherwise I'm freezing cold 24-7.

Ellie: I met someone that's
had Raynaud's before.

Christine: Yeah.

Feet go blue.
I just started to get really fatigued.

Ellie: Because of the lack of blood supply?

Christine: Yeah. It will never go away.

And like, I'm constantly,

at the moment having injections, B12 injections,

because I've got anemia now
due to it.

In that I also have cortisol
and that as well

because I have Addison's.
Ellie: It’s a hormonal...?

Christine: Yeah.

Addison's is where your adrenaline glands
don't form enough adrenaline.

And then you've got to have
the cortisol injections

to keep yourself going
and have that adrenaline,

otherwise you just end up in bed and going to sleep.
Ellie: So much fatigue I'm sure.

Christine: Yeah.

Ellie: And what's it like to have your team
at APM recognise

those signs and maybe tell you
that you need to rest a little bit?

Christine: Well like you said, I'm an open book,
so I like to be open and upfront

with them because, you know, I'm
hoping that, you know, if I ever did

have an Addison's crisis
and ended up dropping to the ground,

they'd know what to do
and they'd know what help to get,

because I know in turn I would do
the same for them.

Ellie: Absolutely. Yeah.

Yeah, I can definitely see, in turn,
helping them if they need help.

I think it's human
nature to want to help people.

Christine: It is.

Ellie: Do you think that your experience and
lived experience of having a disability

yourself has translated into
your role at APM?

Christine: Definitely, I think it's all my experience
from having my disabled daughter to me now,

to, you know, having my daughter's
friends who had,

you know, like cystic fibrosis
and things like that.

It's just the experience I've had.

I can use that on a day-to-day basis
to try and help someone.

Ellie: And what's it like, do you think, for the
participants that come into APM,

you said you love working
with the participants at APM.

What do you think it's like for them
to be able to come in to the office

and to be able to have
someone who's sitting across from them,

who understands what they're going through

and what they're feeling
and what their experiences have been like?

Christine: I'm very lucky in that sense, because
a lot of the participants that we have,

been rural and things like that,

they know, you know, who I am,
how I will help them.

I haven't disclosed everything I have,
but there's little things

I have to help them
understand that we can help them.

You know, we can guide them.

We can support them, I'm very lucky

I have a great rapport with practically
nearly every client in our region.

So, yeah, that's a bonus.

Ellie: And being rural, do you have a real connection
with almost like,

well, you've grown up in the area, right?
So you must have a connection

with so many people
that live in your community.

And then to be able to help those people
in the communities, to be able

to live an amazing life,
to be, to be able to give them the choice

of what they want to do with their life.

It must be just incredible for you.

Christine: It's an amazing feeling.

But it's also great, you know,
with the businesses that are in rural

is they've got that awareness
now, you know, not everything is based, okay,

you may have your illness, injury or
disability, but there's ways around that.

And I'm finding
especially in the rural areas,

they're open-minded more now, you know,

they're seeing a lot more of it,
and they're willing to work with us.

Ellie: I think that's
one of the most amazing things

about having a disability or going through
a kind of hardship is that, you know,

we're talking about transferable skills
before with life experiences.

You learn so much about how to be agile
and how to adapt,

and to be able to be given an
opportunity to showcase that

and to use it as a real skill that you
can't really learn from a textbook.

It's amazing.
Christine: Yeah.

Ellie: Especially as a participant of APM.

What's your favourite
part about working for APM?

Christine: I love the support.

Ellie: Yeah.
Christine: I love the inclusiveness.

You know, I know when I was first diagnosed
with all this stuff about 18 months ago,

I couldn't have got better support
from them.

And I also know that if I have a day
where I can't get out of bed

and it does happen, then I know I can pick
the phone up and just go, I can't do it.

They're not going to judge me.

They're not going to,
you know, fire me or anything like that.

They're very supportive.

Ellie: I think it can be really scary for people
to be really vulnerable.

Christine: Yes.
Ellie: Especially when it comes to disability,

because everyone's experiences
have been so different.

But I know as a person with a disability
in the sporting field, that showing

a vulnerability has resonated really well
with the Australian communities.

So, what would your advice be to
someone who was coming in

that was feeling quite vulnerable
and not really sure

how to approach that conversation
of having open-ended conversation?

Christine: Take your time. I think take your time.
And, you know,

and like I said, it's about,

you know, that open-ended conversation

and the rapport, and I think give
them the time to be able

to, you know, get themselves ready
and start with little steps,

because if you put too much
pressure on people

it just puts them back into a shell.
Ellie: Yeah.

Christine: And you know, they don't feel supported
and things like that.

Ellie: Definitely. That's very sage advice.

And I think from any walk of life
that's really good advice.

Ellie: Now growing up in Armidale, you spent
a lot of time in the communities there.

What do you think having local knowledge

has offered you
in terms of your role at APM?

Christine: I think having the local knowledge,

firstly being an EC
and traveling so much, you know,

and doing the areas of,
like I was in Armidale,

but did Inverell, Glen Innes
and Tenterfield, I think, you know,

I gained a really good rapport
with the businesses and things like that.

The community, entities, you know,

disability support workers
to, you know, absolutely everything.

And I think now moving into the business manager role,
it's been a bit of an advantage.

So, I talk to the participants
and that sort of stuff.

So, even on a Saturday or Sunday,
if you're going downtown for a coffee,

you can guarantee
you're going to run into a participant,

an employer,
you know, just absolutely anyone.

So, you might go down for a half hour coffee and it's
2.5 hours later you’re getting home. So, yeah.

Ellie: Sounds like you've got a really
good connection with your community there.

Christine: Yeah.
Ellie: Yeah, it sounds amazing.

Where do you see yourself going from here,
you’re a business manager now.

Do you like this role?
You'll stay in it for a while?

Or do you see yourself
maybe running APM one day?

Christine: No. Definitely not that.

Look, I love what I do.

Ellie: Yeah.

You know, I think, being 54,
I'm at that age where,

what do I do next? I don't know.

My ultimate goal, ever since
having my disabled daughter

is to just advocate for people
with illness, injury or disability.

Am I going anywhere? No.

But, you know, I'm here for the long haul.

I can't see myself
changing anything at the moment.

But it'll be a wait and see.

Ellie: Yeah, I'm looking forward to it.

And I said before, it's just amazing
to be able to hear your story today

and to hear about how you're using
your daughter's legacy to enable better

lives as well, and the amount of people
that you have positively impacted,

and in turn, your daughter
has positively impacted,

will live on for such a long time and then
positively influence other people.

So to be able to have you do that for APM
and have you do that for us is a real honour, really.

Christine: No. That's okay.

You know, I always believe, you know,

even though it wasn't the best time,

at least I can try and get something
positive from it.

Ellie: Absolutely. I think we all have.
Thank you.

Thank you so much for coming in
and sharing your story with us today.

Christine: Thank you.