Disability can be something you’re born with, something that develops slowly, or something that comes about suddenly, and while many people take on the challenge of caring for their disabled loved ones, it can be challenging to know exactly what it means to be a caregiver.
Kiwi filmmaker Jon Earle has created a deeply intimate documentary that captures just that – a story of endurance, identity, and family life under sustained pressure.
Filmed almost entirely by Earle himself, featherStrength covers the more than a decade Earle has been raising his daughter, who was born with profound developmental disabilities requiring intensive 24/7 care.
It captures the medical uncertainty, isolation, and the toll caregiving can have on relationships, work, and mental health, and has just won Best New Zealand Feature and Best New Zealand Editing at the Doc Edge Festival Awards.
Jack was joined by both Earle and Karen Miles, the CEO of Parent to Parent, a not-for-profit support organisation for families navigating disability, to discuss the film and the journey so many families face caring for their loved ones.
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Speaker 1 (00:07):
You're listening to this Saturday Morning with Jack Team podcast
from News Talks at b John.
Speaker 2 (00:13):
Earle, although he disputes the title, is a key we
filmmaker we can call him that, whose documentary Feather Strength
has just won Best New Zealand Feature and Best New
Zealand Editing at the dock Edge Festival Awards. John spent
more than ten years filming the documentary while raising his daughter, Tuller,
who was born with a profound developmental disability requiring intensive
(00:34):
twenty four to seven care. What began as a private
coping mechanism evolved into what is an incredibly intimate documentary
about caregiving, endurance, identity, family life and love under sustained pressure.
Filmed almost entirely by John himself, the film captures more
than a decade of care routines, medical uncertainty, isolation, and
(00:56):
the toll that caregiving can take on relationships, work and
mental health. John is here with us in studio this
morning and joining him as Karen Miles, who is the
CEO of Parent to Parent, which is a not for
profit support organization for families navigating disability. Calder Cord, thank
you for being here and congratulations job.
Speaker 3 (01:14):
Thanks very much.
Speaker 2 (01:15):
I think you can call yourself a filmmaker now. Even
if you don't call yourself a filmmaker. Now, not only
are you a filmmaker, you're an award winning filmmaker. Job,
So you know, you got to lean into that. For
anyone who hasn't seen feather Strength yet, just give us
the kind of back of the envelope explanation. What is
the story.
Speaker 3 (01:36):
The story is a free spirited guy that married another strong,
free spirited woman and they had many adventures around the world,
kind of big, big vision and living on a wide scale,
(02:02):
and then the unexpected situation where you have something come
across your path which is changes you will completely turns
it upside down.
Speaker 2 (02:14):
Yeah, it's a it's a story of your family life,
and it's a story about relationships. But really it's a
kind of it's a meditation a on on the experience
of having life take a dramatic turn in a way
(02:35):
that you weren't possibly expecting, and the incredible challenges that
come with that, but also the kind of unexpected delights
and joys that come with that. Is that fair?
Speaker 3 (02:44):
Absolutely? Absolutely so. It's a balance to not to not
put too much hardship in and lots of the just
the real stuff that sustains us as parents as well
as now that it's heading out into the world viewers.
Speaker 1 (03:03):
Yeah.
Speaker 2 (03:04):
Yeah, So tell us a little bit more about your
your family. So you because you live in you live
in Europe. But so you and your wife have two daughters,
right right, yeah, and and your second daughter, so she
was born with really significant disabilities, right, requiring twenty four
seven care. That's right, And so how did you digest
(03:26):
that at first? Was that was that.
Speaker 3 (03:29):
It's a it's a process and I was just talking
with Karen about this before, and it's a process that
it doesn't stop. You know, you'll enter a new phase
of your life and you it comes back because you
look at people around you that are experiencing things that
are normal and you don't have that same normal stuff
(03:53):
going on. So it's a it's a process that has
taken is taking time. And just need to know we're
still deeply in this. It's not like this is a
story that's past. We're in it and you will be
for life, right, will be for life? Yeah, that's right.
Speaker 2 (04:13):
Yeah, So how do your daughters now.
Speaker 3 (04:17):
The children in the film that there are two and
a half years apart, and the story in the film
finishes when our eldest is around six or seven.
Speaker 2 (04:31):
Yeah right, Yeah, So Karen, the sense I got watching
this film, I mean I found it very moving just
as a person, but also as a parent of a
young child. But I also got the sense that this
was a very important, rarely told story. I'm not going
to say an untold story, but a story that doesn't
(04:53):
that many people will relate to, that doesn't have the
kind of attention that it should. What was your sense
watching it?
Speaker 4 (04:59):
Absolutely the same. We support families throughout the country nationally
and have done for four two years, and Parent Parent
was set up via a phone tree that then became
a service that supported over well. We had seven hundred
thousand asks last year in terms of reach. Wow. Yeah,
some families reaching out to us multiple times for support
(05:21):
and John. What John has achieved in this film is
exactly what our families go through every day. And it
is as we were just, you know, discussing a lifetime journey.
It's one of profound love in terms of the unconditional
love within the family unit. Within you know that we
have to find within ourselves to have the resilience to
(05:43):
go forward, but it is the untold story of so
many people throughout the world, but in particular right now
in New Zealand. Yeah, and completely accurate. The highs, the lows,
the roller coaster, the multiple hats that families have to wear,
you know, from becoming you know, caregivers to funders, to
therapists to you know, the multiple different roles and its
(06:07):
complete surprise in most instances that families aren't prepared for
and what they have to navigate is extraordinary. You know,
I can share some stats a little bit later, but
in New Zealand, for example, you know, fifteen percent of
families are able to work, and that's a very common story,
so they lose income. It takes sometimes multiple years to
(06:29):
get an assessment to determine whether your child in fact
does have a disability. Once that happens, to prove ongoingly
here after year, to get you know, minimal support to
be able to continue is a real challenge. Twenty percent
work part time and that's very much with parents to
parent are our team all have lived experience, so they're
(06:53):
all in the same boat and do this work from
a place of absolute passion, understanding, wanting better outcomes for
their own children, but also to support other families on
the same path. So it's yeah, are staggering in this
country in terms of the lack of support and how
that looks in terms of in every regard, whether it's
(07:14):
mental health, emotional, you know, physical, the ability to work,
all the things that we're talking about here. But having
said all of that, what we see day after day
after day is what John has illustrated in this magnificent film,
and that the resilience, the strength that you know, kiwi
ingenuity in terms of how do we overcome this is
(07:36):
just so humbling. The grace in which our families navigate
this journey blows me away every single days. It's such
an honor and a privilege to be in this space.
Speaker 2 (07:45):
Yeah, it's I can imagine that there is no kind
of panacee if for every family that is affected, right,
there's no one thing that is going to make a difference.
Although I can imagine that having a support network is
just is maybe the most important and significant thing. Yes,
but what's clear in the film, John, not just through
(08:05):
the film, but through some of some of the experiences
you share in the film, is that creating was a
real outlet of sorts for you that that became a
real outlet of sorts for you. Can you tell us about.
Speaker 3 (08:18):
That, Yeah, Well, you have to kind of explore what's
in your toolbox, literally, what do I have in me
that I can How can I express what I'm going
through in a productive way? And I felt at that
time that I needed to do it with using my hands,
(08:39):
and so that for me was a really really positive
way to be able to express the grief or the
pain of the suffering, the hardship that I was experiencing
and to be able to put that.
Speaker 2 (08:53):
Out Yeah, yeah, yeah, yeah, yeah. There's also a lot
of you know, one thing I noticed in the film
is that you are You said that you're someone who
has always loved adventures, love being out on the world
and kind of feeling the wind on your face, you know,
like feeling the elements on your body. And that's a
(09:13):
really big component in the film as well, Like you
really struck me as someone who likes to be outside.
Speaker 3 (09:18):
Yeah, I'm totally an outdoor guy. Yeah, absolutely, And that's
the contrast is from being that wide open to being confined, yeah,
and literally walking in with in four walls just to
carry a baby. That's crying and crying and crying. Yeah,
(09:41):
it's pretty hard.
Speaker 2 (09:45):
Yeah, yeah, is it.
Speaker 4 (09:49):
Like?
Speaker 2 (09:49):
Have you have you been able to over time? Have
you been able to create that space for yourself, you
and your partner? But you know, you've seen what works
and you can kind of you can carve out those
little moments of you know, you can.
Speaker 3 (10:06):
Pre need to create that. I mean that of the
in the in the art panel series, there's the panel
that has the space between is for me, the most
significant of the five panels. And to be able to
offer yourself that space to process, to explore, to create
(10:29):
in my in my case and space and the relationship
where you can give each other space to go and
explore and to try and find meaning in what this
is now and that this week is an example of that. Absolutely.
I mean, my partners holding holding the forward at home
(10:53):
so I can come and share this with New Zealand
and so she's giving she's giving me that space, which
is wonderful.
Speaker 2 (11:05):
It is We're very grateful to her and very very
grateful that you can.
Speaker 3 (11:09):
Have the space to Absolutely.
Speaker 2 (11:11):
Karen, how did you feel when you watch a film
for the first time?
Speaker 4 (11:14):
Gosh, I was moved to tears several times. I was
awe struck. I was inspired and a lot of self
reflection in terms of my own family's journey. I'm a
sibling of a child with the disability, and yeah, just
the resilience, the strength, the journey that each member of
(11:35):
John's family has gone on his other daughter. The love
you know, that just blew me away.
Speaker 2 (11:43):
She's so sweet, isn't sweet? Athlete?
Speaker 4 (11:46):
Utter acceptance, and that is the story of children. You know,
we support siblings through all kinds of different means, camps
and days, and you know, because it's it's such a
profound journey for them as well, and often one that
you know, parents, it's a real challenge for parents what
do I do about you know, our siblings and what
happens to that child in terms of their future. So
(12:08):
for that reason, we provide a lot of support in
that area. But man, is she extraordinary, that little girl,
like just you could not just love love story.
Speaker 2 (12:17):
Yeah, yeah, she also you know, she's she's just such
a sibling, you know, like there was this there's a
moment in the film, I think where you're all just
sitting there and it was one of those it was
very very clever, little piece of storytelling, and that it
was just kind of giving us as viewers a sense
of time passing and of the kind of the difficult
(12:37):
monotony of things at times. And yeah, she was I
think she was playing with a bubble gun, you know,
like a gun that blows bubbles, right, and you're all
just sitting there and the gun is really annoying. It
makes lots of noise and whatever, and it spits out
of these bubbles and you're just like you kind of
just glance at her and you're like, I'm not going
to fight this.
Speaker 1 (12:56):
Fine.
Speaker 2 (12:58):
Yeah, but you know, I think anyone watching it, you know,
with kids or with siblings, immediately relates like, yeah, yeah,
I get it, John, What do you hope people get
aunt of the film?
Speaker 3 (13:11):
I'm curious. I'm going into today because today's the premiere
with curiosity and just yeah, we'll see.
Speaker 2 (13:19):
I think you can be confident, like you're an a
war winning filmmaking at let us not forget. But I mean,
I mean, yeah, I can imagine that putting yourself out
there for such an intimate story on the public, on
a you know, in a really public way, I can
imagine that's a scary thing to do.
Speaker 3 (13:39):
I think, yes, there's an element of that, but you
have to I have to put myself in the picture
where it's doing it for something bigger than myself and
to give someone a little bit of encouragement just to
keep on going.
Speaker 2 (13:55):
Yeah, well, congratulations. We really delighted to see the film
acknowledged and I just think it is such an important,
vital story that you have been able to tell. So
thank you for doing that, and thank you to you
to your family for for doing that. We really yeah,
we really admire it. Thanks so much for having us yesterday.
Speaker 1 (14:17):
Oh of course.
Speaker 2 (14:18):
Yeah, and good luck today. Try and enjoy the enjoy
the moment as much as you can. John John is
the well creator behind Feather Strength, which is just one
Best New Zealand Feature and Best New Zealand Editing at
the doc Edge Festival Awards. Karen Miles is the CEO
of Parent to Parent. Will have all of the details
for Feather Strength up on the News Talks. He'd be
(14:39):
website as well.
Speaker 1 (14:41):
For more from Saturday Morning with Jack Tame. Listen live
to news Talks he'd be from nine am Saturday, or
follow the podcast on iHeartRadio.
You're listening to this Saturday Morning with Jack Team podcast
from News Talks at b John.
Speaker 2 (00:13):
Earle, although he disputes the title, is a key we
filmmaker we can call him that, whose documentary Feather Strength
has just won Best New Zealand Feature and Best New
Zealand Editing at the dock Edge Festival Awards. John spent
more than ten years filming the documentary while raising his daughter, Tuller,
who was born with a profound developmental disability requiring intensive
(00:34):
twenty four to seven care. What began as a private
coping mechanism evolved into what is an incredibly intimate documentary
about caregiving, endurance, identity, family life and love under sustained pressure.
Filmed almost entirely by John himself, the film captures more
than a decade of care routines, medical uncertainty, isolation, and
(00:56):
the toll that caregiving can take on relationships, work and
mental health. John is here with us in studio this
morning and joining him as Karen Miles, who is the
CEO of Parent to Parent, which is a not for
profit support organization for families navigating disability. Calder Cord, thank
you for being here and congratulations job.
Speaker 3 (01:14):
Thanks very much.
Speaker 2 (01:15):
I think you can call yourself a filmmaker now. Even
if you don't call yourself a filmmaker. Now, not only
are you a filmmaker, you're an award winning filmmaker. Job,
So you know, you got to lean into that. For
anyone who hasn't seen feather Strength yet, just give us
the kind of back of the envelope explanation. What is
the story.
Speaker 3 (01:36):
The story is a free spirited guy that married another strong,
free spirited woman and they had many adventures around the world,
kind of big, big vision and living on a wide scale,
(02:02):
and then the unexpected situation where you have something come
across your path which is changes you will completely turns
it upside down.
Speaker 2 (02:14):
Yeah, it's a it's a story of your family life,
and it's a story about relationships. But really it's a
kind of it's a meditation a on on the experience
of having life take a dramatic turn in a way
(02:35):
that you weren't possibly expecting, and the incredible challenges that
come with that, but also the kind of unexpected delights
and joys that come with that. Is that fair?
Speaker 3 (02:44):
Absolutely? Absolutely so. It's a balance to not to not
put too much hardship in and lots of the just
the real stuff that sustains us as parents as well
as now that it's heading out into the world viewers.
Speaker 1 (03:03):
Yeah.
Speaker 2 (03:04):
Yeah, So tell us a little bit more about your
your family. So you because you live in you live
in Europe. But so you and your wife have two daughters,
right right, yeah, and and your second daughter, so she
was born with really significant disabilities, right, requiring twenty four
seven care. That's right, And so how did you digest
(03:26):
that at first? Was that was that.
Speaker 3 (03:29):
It's a it's a process and I was just talking
with Karen about this before, and it's a process that
it doesn't stop. You know, you'll enter a new phase
of your life and you it comes back because you
look at people around you that are experiencing things that
are normal and you don't have that same normal stuff
(03:53):
going on. So it's a it's a process that has
taken is taking time. And just need to know we're
still deeply in this. It's not like this is a
story that's past. We're in it and you will be
for life, right, will be for life? Yeah, that's right.
Speaker 2 (04:13):
Yeah, So how do your daughters now.
Speaker 3 (04:17):
The children in the film that there are two and
a half years apart, and the story in the film
finishes when our eldest is around six or seven.
Speaker 2 (04:31):
Yeah right, Yeah, So Karen, the sense I got watching
this film, I mean I found it very moving just
as a person, but also as a parent of a
young child. But I also got the sense that this
was a very important, rarely told story. I'm not going
to say an untold story, but a story that doesn't
(04:53):
that many people will relate to, that doesn't have the
kind of attention that it should. What was your sense
watching it?
Speaker 4 (04:59):
Absolutely the same. We support families throughout the country nationally
and have done for four two years, and Parent Parent
was set up via a phone tree that then became
a service that supported over well. We had seven hundred
thousand asks last year in terms of reach. Wow. Yeah,
some families reaching out to us multiple times for support
(05:21):
and John. What John has achieved in this film is
exactly what our families go through every day. And it
is as we were just, you know, discussing a lifetime journey.
It's one of profound love in terms of the unconditional
love within the family unit. Within you know that we
have to find within ourselves to have the resilience to
(05:43):
go forward, but it is the untold story of so
many people throughout the world, but in particular right now
in New Zealand. Yeah, and completely accurate. The highs, the lows,
the roller coaster, the multiple hats that families have to wear,
you know, from becoming you know, caregivers to funders, to
therapists to you know, the multiple different roles and its
(06:07):
complete surprise in most instances that families aren't prepared for
and what they have to navigate is extraordinary. You know,
I can share some stats a little bit later, but
in New Zealand, for example, you know, fifteen percent of
families are able to work, and that's a very common story,
so they lose income. It takes sometimes multiple years to
(06:29):
get an assessment to determine whether your child in fact
does have a disability. Once that happens, to prove ongoingly
here after year, to get you know, minimal support to
be able to continue is a real challenge. Twenty percent
work part time and that's very much with parents to
parent are our team all have lived experience, so they're
(06:53):
all in the same boat and do this work from
a place of absolute passion, understanding, wanting better outcomes for
their own children, but also to support other families on
the same path. So it's yeah, are staggering in this
country in terms of the lack of support and how
that looks in terms of in every regard, whether it's
(07:14):
mental health, emotional, you know, physical, the ability to work,
all the things that we're talking about here. But having
said all of that, what we see day after day
after day is what John has illustrated in this magnificent film,
and that the resilience, the strength that you know, kiwi
ingenuity in terms of how do we overcome this is
(07:36):
just so humbling. The grace in which our families navigate
this journey blows me away every single days. It's such
an honor and a privilege to be in this space.
Speaker 2 (07:45):
Yeah, it's I can imagine that there is no kind
of panacee if for every family that is affected, right,
there's no one thing that is going to make a difference.
Although I can imagine that having a support network is
just is maybe the most important and significant thing. Yes,
but what's clear in the film, John, not just through
(08:05):
the film, but through some of some of the experiences
you share in the film, is that creating was a
real outlet of sorts for you that that became a
real outlet of sorts for you. Can you tell us about.
Speaker 3 (08:18):
That, Yeah, Well, you have to kind of explore what's
in your toolbox, literally, what do I have in me
that I can How can I express what I'm going
through in a productive way? And I felt at that
time that I needed to do it with using my hands,
(08:39):
and so that for me was a really really positive
way to be able to express the grief or the
pain of the suffering, the hardship that I was experiencing
and to be able to put that.
Speaker 2 (08:53):
Out Yeah, yeah, yeah, yeah, yeah. There's also a lot
of you know, one thing I noticed in the film
is that you are You said that you're someone who
has always loved adventures, love being out on the world
and kind of feeling the wind on your face, you know,
like feeling the elements on your body. And that's a
(09:13):
really big component in the film as well, Like you
really struck me as someone who likes to be outside.
Speaker 3 (09:18):
Yeah, I'm totally an outdoor guy. Yeah, absolutely, And that's
the contrast is from being that wide open to being confined, yeah,
and literally walking in with in four walls just to
carry a baby. That's crying and crying and crying. Yeah,
(09:41):
it's pretty hard.
Speaker 2 (09:45):
Yeah, yeah, is it.
Speaker 4 (09:49):
Like?
Speaker 2 (09:49):
Have you have you been able to over time? Have
you been able to create that space for yourself, you
and your partner? But you know, you've seen what works
and you can kind of you can carve out those
little moments of you know, you can.
Speaker 3 (10:06):
Pre need to create that. I mean that of the
in the in the art panel series, there's the panel
that has the space between is for me, the most
significant of the five panels. And to be able to
offer yourself that space to process, to explore, to create
(10:29):
in my in my case and space and the relationship
where you can give each other space to go and
explore and to try and find meaning in what this
is now and that this week is an example of that. Absolutely.
I mean, my partners holding holding the forward at home
(10:53):
so I can come and share this with New Zealand
and so she's giving she's giving me that space, which
is wonderful.
Speaker 2 (11:05):
It is We're very grateful to her and very very
grateful that you can.
Speaker 3 (11:09):
Have the space to Absolutely.
Speaker 2 (11:11):
Karen, how did you feel when you watch a film
for the first time?
Speaker 4 (11:14):
Gosh, I was moved to tears several times. I was
awe struck. I was inspired and a lot of self
reflection in terms of my own family's journey. I'm a
sibling of a child with the disability, and yeah, just
the resilience, the strength, the journey that each member of
(11:35):
John's family has gone on his other daughter. The love
you know, that just blew me away.
Speaker 2 (11:43):
She's so sweet, isn't sweet? Athlete?
Speaker 4 (11:46):
Utter acceptance, and that is the story of children. You know,
we support siblings through all kinds of different means, camps
and days, and you know, because it's it's such a
profound journey for them as well, and often one that
you know, parents, it's a real challenge for parents what
do I do about you know, our siblings and what
happens to that child in terms of their future. So
(12:08):
for that reason, we provide a lot of support in
that area. But man, is she extraordinary, that little girl,
like just you could not just love love story.
Speaker 2 (12:17):
Yeah, yeah, she also you know, she's she's just such
a sibling, you know, like there was this there's a
moment in the film, I think where you're all just
sitting there and it was one of those it was
very very clever, little piece of storytelling, and that it
was just kind of giving us as viewers a sense
of time passing and of the kind of the difficult
(12:37):
monotony of things at times. And yeah, she was I
think she was playing with a bubble gun, you know,
like a gun that blows bubbles, right, and you're all
just sitting there and the gun is really annoying. It
makes lots of noise and whatever, and it spits out
of these bubbles and you're just like you kind of
just glance at her and you're like, I'm not going
to fight this.
Speaker 1 (12:56):
Fine.
Speaker 2 (12:58):
Yeah, but you know, I think anyone watching it, you know,
with kids or with siblings, immediately relates like, yeah, yeah,
I get it, John, What do you hope people get
aunt of the film?
Speaker 3 (13:11):
I'm curious. I'm going into today because today's the premiere
with curiosity and just yeah, we'll see.
Speaker 2 (13:19):
I think you can be confident, like you're an a
war winning filmmaking at let us not forget. But I mean,
I mean, yeah, I can imagine that putting yourself out
there for such an intimate story on the public, on
a you know, in a really public way, I can
imagine that's a scary thing to do.
Speaker 3 (13:39):
I think, yes, there's an element of that, but you
have to I have to put myself in the picture
where it's doing it for something bigger than myself and
to give someone a little bit of encouragement just to
keep on going.
Speaker 2 (13:55):
Yeah, well, congratulations. We really delighted to see the film
acknowledged and I just think it is such an important,
vital story that you have been able to tell. So
thank you for doing that, and thank you to you
to your family for for doing that. We really yeah,
we really admire it. Thanks so much for having us yesterday.
Speaker 1 (14:17):
Oh of course.
Speaker 2 (14:18):
Yeah, and good luck today. Try and enjoy the enjoy
the moment as much as you can. John John is
the well creator behind Feather Strength, which is just one
Best New Zealand Feature and Best New Zealand Editing at
the doc Edge Festival Awards. Karen Miles is the CEO
of Parent to Parent. Will have all of the details
for Feather Strength up on the News Talks. He'd be
(14:39):
website as well.
Speaker 1 (14:41):
For more from Saturday Morning with Jack Tame. Listen live
to news Talks he'd be from nine am Saturday, or
follow the podcast on iHeartRadio.
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Betrayal Weekly
Betrayal Weekly is back for a new season. Every Thursday, Betrayal Weekly shares first-hand accounts of broken trust, shocking deceptions, and the trail of destruction they leave behind. Hosted by Andrea Gunning, this weekly ongoing series digs into real-life stories of betrayal and the aftermath. From stories of double lives to dark discoveries, these are cautionary tales and accounts of resilience against all odds. From the producers of the critically acclaimed Betrayal series, Betrayal Weekly drops new episodes every Thursday. If you would like to share your story, you can reach out to the Betrayal Team by emailing them at betrayalpod@gmail.com and follow us on Instagram at @betrayalpod and @glasspodcasts. Please join our Substack for additional exclusive content, curated book recommendations, and community discussions. Sign up FREE by clicking this link Beyond Betrayal Substack. Join our community dedicated to truth, resilience, and healing. Your voice matters! Be a part of our Betrayal journey on Substack.