June 9, 2023 • 50 mins
Eliza is a musician, writer, speaker, and advocate — changing the way the world views disability.
Having established herself as one of Australia’s most important voices and striking songwriters of recent years, Castlemaine-based artist Eliza Hull has proven the longevity of her art, and continued evolution.
Growing up with CMT, Eliza recalls visiting dozens of doctors and being required to “walk in a straight line.” Decades later, she has transformed her journey into the powerful music and lyrics of her new single ‘Running Underwater.’ It’s the first song Hull has written about being disabled and living with CMT.
In recent years, Hull has emerged as an accessibility advocate within the industry, her determination and approach to educating and sparking change for disability inclusion through her podcast and 2 powerful books.
- Listen to Eliza’s Music
- Watch Eliza’s Powerful Music Video
- Check out Eliza’s Website
- Buy Eliza’s Book We’ve Got This
- Pre-order Eliza’s Children’s Book
- Book an EmBRACE It Workshop
- Looking for more great tips, hacks, and blog posts? Visit: Trend-Able.com
- Find more on Charcot-Marie-Tooth (CMT) and patient resources at: HNF-cure.org
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Hosted by Lainie Ishbia and Estela Lugo.
Embrace It is produced by Launchpad 516 Studios.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Eliza Hull (00:03):
Welcome to the Embrace It series, where women
with all types of disabilitiescan be real, resourceful and
stylish.
With each episode, you'll walkor roll away with everyday tips,
life hacks and success storiesfrom community leaders and
influencers.
So take off your leg braces andstay a while with Lainey and
Estella.
Lainie (00:25):
Hi, I'm Lainey and.
Estela (00:27):
I have CMT.
I'm a neuro-muscular disorderaffecting approximately 2.6
million people worldwide.
Lainie (00:36):
That's as many as MS.
We believe disabilities shouldnever get in the way of looking
or feeling good.
Both of us wear leg braces andhave learned through our own
personal journeys to embrace it.
Estela (00:49):
Brought to you by Launchpad 516 Studios.
Each episode is designed tochallenge your own stigmas and
beliefs around disability.
We want our listeners to getthe most value for their time
spent with us, so we interviewsome of the most empowering
disability badasses in the world.
Through storytelling, personalexperiences and tips, we're all
reminded of our own strengthsand endless potential.
Lainie (01:09):
For more information and exclusive resources, check out
our websites at trend-ablecomand hnf-curorg, and don't forget
to hit the subscribe button forfuture episodes and special
promos.
Estela (01:31):
Welcome everyone to our spring episode of the Embraced
Podcast.
Hi Lainey, Hi Estella.
We are here on the cusp ofMother's Day weekend and we
might not get this out in timefor Mother's Day, But
nonetheless we definitely have abadass disability advocate mom
(01:52):
as our guest today.
Very special guest joining usfrom London.
Her name is Eliza Hull.
Welcome, Eliza, Hi, how are you?
Thanks for having me.
You're so excited to have comeacross your work and your story
and we love especiallyconnecting with the CMT
community outside of the US,because I think many times we
(02:14):
forget how big our community isand how globally diverse it is.
And we came across you onInstagram and we saw some of the
amazing work that you're doingand it seems like you're very
multifaceted talents, cover many, many different areas.
So I think, before we dive intothat, we'd love to hear a
(02:34):
little bit about your journey,your diagnosis and kind of a
little bit of your backstory.
Eliza Hull (02:40):
Well, it's so lovely to be here.
So I live in a place calledCastle Main, which is a regional
town about an hour and a halffrom Melbourne, australia.
I'm currently in England rightnow, but yeah, i have always
lived in Australia.
When I was about I think it wasabout five years old I started
(03:04):
falling over at school and myparents didn't know what was
happening.
So I was taken to many doctor'sappointments and a lot of the
conversations were about me andnot with me or to me, so I was
very confused as a child.
After being diagnosed with lotsof various conditions, i was
(03:29):
finally diagnosed withchaco-mary tooth, and the way
that it affects my life is Iwalk with a very different gait.
I still fall over a lot.
I can't get upstairs unlessthere's a handrail to lift me up
(03:50):
.
If there's no handrail, it'sabsolutely impossible for me.
I have freezing, cold legs,even on a hot summer's day, and
I mean a fair bit of pain.
About a couple of months ago Iactually broke my leg, so that
(04:10):
was an extra layer of having mydisability but then also having
a broken leg.
It was quite hard for the lastcouple of months But, funnily
enough, when I was five yearsold when I started to develop my
disability, i also started tosing And that was really a fluke
chance where I was asked tosing in a local competition with
(04:35):
my school and won a gold medalin the competition.
And I guess, when I was goingthrough so much confusion about
having a disability as a child,it was a way to not only express
myself and all the things thatI was feeling but also have
(04:56):
positive reinforcement of that.
I was able to do something thatpeople would say was like a
positive thing instead of italways being a negative.
So I guess that was how Istarted singing and I've never
looked back.
But all through my teenageyears, i think because of that
(05:19):
lack of representation, i didn'treally see anybody that walk
differently and sang or lookdifferent in being disabled.
And so in the music industry Idecided that I was going to hide
my disability as much as Icould And really just would.
Whenever I met any kind ofprospective management or agent,
(05:42):
i would sit down and hide myhands or hide the way that I
walked, because I was afraidthat I wouldn't get the
opportunity because I wasdisabled.
And it wasn't actually until Ibecame pregnant that I decided
it was time to be me decided itwas time to be authentic.
I think having kids was thereal catalyst to go.
(06:05):
Actually, i want a modelauthenticity for my children so
that they can be whoever theyare or whoever they choose to be
.
And so I guess that feeling of,i guess, family security as
well and feeling like I was in areally solid partnership, but
also just wanting to be a true,authentic self for my children,
(06:27):
was the catalyst for me not onlybeing myself, but realizing
that there was so many barriersand things to change in the
world when it came to disability.
Lainie (06:37):
Did you pass on CMT to your kids, eliza, or do you have
a different type of CMT?
And I have the most common 1A,estella for something, whatever
it is, but she doesn't pass iton.
So what about you?
Eliza Hull (06:55):
Yeah, so I guess, because there's so many types of
CMT, i've had the kind of panelblood test and never been
diagnosed with a certain type.
At this point I'm now at thestage where I could get the
extra testing done.
So I'm kind of yeah, at thatpoint where now I could go and
(07:17):
find out.
My children aren't showingsymptoms at this point.
But in saying that, i've got athree year old and an eight year
old and I started showingsymptoms when I was five and
with CMT, as we know, it canhappen at any point in
somebody's life.
So I don't know, is my answer.
Estela (07:34):
So going on to your music career, motherhood
obviously had an impact on howyou wanted to present yourself
to the world.
How did you begin to have thoseconversations with management
and just people within yournetwork?
How did that come about andwhat were the reactions?
Lainie (07:56):
I kind of just paused because Eliza isn't just like a
singer, like doing karaoke, likeEliza is like a real singer,
like a professional singer.
Right, you do concerts.
She's been featured lots ofplaces.
You're big in Australia and onthe rise and so many other
places.
So I just want to set the tonethat we're not just talking
(08:18):
about.
Well, like myself, you wouldnot want to hear me sing.
but who is attempting to justsing in a little karaoke club?
This is like real singing.
God for lively.
This is what you do.
Eliza Hull (08:32):
Yeah, that's so nice of you to say Thank you.
I guess I don't know whetheryou felt like this, but when I
decided to be myself andidentify as disabled and speak
about it, i also felt like theworld was ready for that, in
that we've now moved into thisspace where disability and
(08:53):
diversity is.
We're not at an equal level,that's for sure.
We're still living in aninaccessible world, we still
face discrimination I'm stillstared at when I'm in society
and sometimes even stopped andprayed for But we are moving
into a space where it's beingmore celebrated and more spoken
(09:15):
about.
And so I guess when I decidedto identify as disabled, the
music industry was alreadystarting to shift and
organisations are wanting to dobetter.
The areas which is like theequivalent of the Grammys are
wanting to change and have moredisability representation and
(09:38):
have a ramp up onto the stage.
But that's taken a lot ofadvocacy.
So I guess I felt like the timethat I was really ready, it
almost felt like a completeshift that society was also
ready at the same time.
I think that was complete flukeand chance.
I think it was probably a bitof both, in that it was a chance
(10:02):
that I was feeling that.
But I also think that I wasable to identify at the time
that I felt more invited andaccepted to do so.
So I think there's so much thatneeds to change and that
there's still lack ofrepresentation in festivals and
on radio, but at the same timeit's something that people are
(10:26):
really caring about, at least atleast thinking about, at least
wanting to make those changes,whether it's still quite small
changes and it takes a long time, but it's definitely happening.
Lainie (10:39):
So you know, for our listeners, who some have CMT,
some have other types ofdisabilities, you know, you are
on a stage right, like, first ofall there's the pre-part, which
is getting up on the stage,then there's balancing during
your performances and being ableto do that in a way that's
(11:02):
still entertaining and not, iwould imagine, drawing attention
to your disability, butobviously, as a singer, you want
people to pay attention to yourvoice and to get into the, you
know, into the music.
So I'm just thinking about,like, the basics of that stuff,
like so, how did you navigate it?
Like yes, the world is maybemore accepting, but you still
(11:26):
have to assert yourself eachtime, i would imagine, and say
what you need to people.
And then, how do you balanceduring a show?
Eliza Hull (11:35):
Yeah, i hold onto things.
So I like that's.
I've realized that you justthat's how I navigate my life.
Like when I'm looking atsomewhere I have to get up onto
or into, i'm always thinkingwhat can I hold on to to get
into there, onto that?
So the stage is exactly thesame.
(11:55):
So I'm holding onto my micstand, i'm holding onto my
keyboard stand to balance,trying not to fall over.
I've just done the first evershow recently where I decided to
wear because I was wearing likea really beautiful dress.
I ended up actually wearing noshoes underneath that dress.
(12:15):
It was not, it wasn't visibleto the audience.
I didn't care if it was orwasn't, but it wasn't.
But it actually helped mebecause I wasn't in shoes and
didn't and was able to kind ofhold myself up right And it
actually really helped becausesinging is quite physical And I
(12:38):
hadn't really realized thatuntil recently, that not only is
it hard to get into a venue, tofeel isolated because I can't
go and hang out with mybandmates, because I can't get
up the stairs to go and hang outwith them, to not be able to
get up on the stage, to have toget them to lift me or to crawl
up the steps to get onto thatstage.
(12:59):
But then not only that is whenyou're on the stage.
How do you stand and sing?
How do you use that whole bodyto really sing?
So I think it's hard.
I'm not going to lie, it's hardand it's exhausting And, yeah,
there are moments where I wonderif that is the right path for
(13:22):
me because it is so exhausting.
But ultimately, it's the way Iexpress myself.
It's something that I've learntto be good at, and I think that
I know how importantrepresentation is.
So I always think aboutemerging disabled artists.
(13:43):
To see somebody like them, orto see somebody that even isn't
like them but has a disabilitydoing it.
That's so powerful.
Estela (13:55):
Well, it's definitely very easy to see that it is your
passion and it is your art, andwe're going to do something
that we haven't done before.
We're going to play your latestsong, but before that I'd love
to get a little bit of abackground on the song itself.
I believe it's called RunningUnder Water And I played it
today and I was just like I wastelling Lena I'm like this is
(14:17):
really good, like this issomething I would listen to on a
regular basis.
I found the melody to bebeautiful.
I found the lyrics to bebeautiful.
It's like riding my wheelhouse.
I would love to hear where thissong came from and what the
lyrics, what you're reallytrying to express in the lyrics
and the message that you want toportray to people.
Eliza Hull (14:39):
Yeah, i guess in the first verse the lyrics start
with if these legs will not move, it's just the way it's going
to be.
And maybe I don't fit in withwhat you want me to be, because
I think that you and not evenpeople that maybe don't have a
disability, that have been toldthat they have to change to fit
(14:59):
in And that's really what thesong is about And being told
that you have to.
For me it was to.
As a child, i had to walk intoa straight line so that the
doctors could watch me walk andstudy the way that I walked And
I felt their gaze.
I felt there that intensefeeling of that I needed to
(15:21):
change, that I needed to fixmyself.
That to be me was somethingthat ought to change and needed
to be fixed ultimately And theanalogy of running underwater is
really about that feeling oflike pushing up against
(15:42):
society's view of beingdifferent and being disabled And
that ultimately it's hard andthere's so many barriers, but if
you are true to yourself, thatyou can actually push through
that and be okay in the end- AndI love that analogy Because me
(16:04):
myself I could see the two sidesof that analogy running
underwater, that resistance, butat the same time the freedom
because physically underwaterthat's the only way I know what
you're going to say.
Lainie (16:16):
That's like when you can run.
When I can run, Yeah.
And the time I would be able torun is with the gravity and the
help of water, you know, andit's the word.
Eliza Hull (16:25):
Yeah, Yeah, that's so true actually.
Yeah, you're right.
Yeah, it's beautiful.
Estela (16:29):
So we're gonna we're gonna play your song and we're
gonna let everybody kind of hearfor themselves and we're gonna
share afterwards where they candownload the song and listen to
some of your other songs as well.
Here's Eliza Ho with RunningUnder Water.
Eliza Hull (16:51):
Oh, oh, oh, oh, oh, oh, oh, oh, oh oh.
If these legs would not move,This is just the way it's gonna
be.
Well, maybe I don't fit in Withwhat you want me to be.
(17:15):
Whoa, this cookie cutterversion Is not doing me any
favors.
I don't wanna bring fuel to thefire.
I gotta get louder.
I gotta, gotta, gotta.
(17:38):
Take the weight Off me.
Show my bones for you to see,cause I'm not getting far.
I'm running on the water, causeI'm not getting far.
(18:05):
I'm running from you.
Oh, oh, oh, oh, oh oh.
I remember when I was five, theytold me to walk in a straight
(18:30):
line.
Growing up, i was always tryingto feed it, trying to be pretty
and thin to win.
I'm not somebody you wanna fix.
I gotta get louder.
I gotta, gotta, gotta.
(18:52):
I gotta, gotta, gotta.
Take the weight Off me.
Show my bones for you to see,cause I'm not getting far.
(19:16):
I'm running on the water, causeI'm not getting far.
I'm running from you.
Oh, oh, oh, oh, oh, oh, i'mrunning.
(19:40):
Oh, oh, oh, oh, oh, oh, causeI'm not getting far.
I'm running on the water, causeI'm not getting far.
I'm running from you.
(20:05):
Take the weight off me.
Show my bones for you to see.
Lainie (20:25):
Oh, gorgeous.
Estela (20:29):
I felt myself like joking up over it.
It chills.
Lainie (20:31):
Right, but like What?
is it like to listen to yourown song?
Eliza Hull (20:36):
Yeah, odd, odd, especially because it's such a I
mean, this song is only outyesterday Or today, really.
Yeah, so, odd, odd, odd to hearit back.
As an artist, you kind of gothrough waves of Going oh, is it
any good?
But to be honest, listening toit then I just felt like feeling
(20:58):
of, you know, i guess,collective power, not like just
that kind of like Pride.
You know, pride, disability,pride, a good feeling basically.
Estela (21:09):
When I hear the words take the weight off me.
I love that.
I think that's you know.
One of our missions with thispodcast is to help you.
Help you take off yourselvesThe weight that we don't even
realize we carry with us everyday.
What does that mean to you?
Eliza Hull (21:25):
Yeah, exactly that, because I think there are things
that are hard about beingdisabled.
There are things that are hardthat are caused by the wider
society, but there's also justthings that are just hard right,
like pain.
Pain is annoying, pain sucks,pain is really hard, and pain,
(21:48):
yeah, it can make me feel like Ican't do things, and that's
really hard, like even going forit, you know, just to hang out
with my family Or be able to dothings that I really want to do,
and it stops that fromhappening and that can feel
really hard at times.
And then also wider societybarriers.
Like you know, we live in areally inaccessible world.
(22:10):
We live in a world that's notbuilt for us, and we also face,
you know, attitudes that youknow discrimination, or people
that stare or people that ask,you know, certain questions That
really hurt or say things thatreally hurt.
So I guess for me it's like,you know, take, that is the
(22:32):
weight, that is the thing that Icarry around And I want that to
be taken from myself and forothers.
Estela (22:38):
And I think it's so powerful the way you speak about
disability.
And also you're not only asongwriter but you're an author,
and you've written two books sofar.
One of them is geared moretowards adults and shining a
light on disabled adults And theparenting world, and then one
(22:59):
is geared more towards children.
Where did those books come from?
Assuming they were inspired byyour own experience of
motherhood with a disability?
Eliza Hull (23:09):
Yeah.
So when I met my partner myhusband to be, i was really
excited to start a family AndI'd always wanted to have kids
And luckily I'd grown up in afamily where it had been
accepted, and kind of almostlike expected really, that I
would have children.
Mum and dad were like, yeah, wewant to grant children.
(23:31):
So I just thought that was justgoing to be a possibility for
someone like me.
I knew that it would bechallenging And I also I had
worried about passing on mydisability, not because I didn't
like I wasn't accepting ofmyself at that time.
(23:51):
It was more that I knew thatthe world was hard.
So it was like, if it's hardfor me, what would that be like
for them?
But ultimately I knew that Iwas the most experienced person
to make that decision, becauseI'd lived with my disability all
my life And I decided, yeah,i'm going to do it anyway.
I know what it's like and I canactually be there for them, i
(24:16):
can help them through navigatingan inaccessible world And I
have that experience.
But when I went to myneurologist and said that's what
I wanted to do, i wanted tostart a family, and he second
guessed me and said that hedidn't think that I could do it
And he was worried that I wouldbecause I fall over a lot, that
(24:36):
I would fall over and hurt mybaby Being pregnant, that I
would fall over and that Iwouldn't be able to manage.
And then said is there anyother way that you could
potentially not have a child Butstill have children in your
life?
And at that moment I just feltvery vulnerable and a lot of
(24:57):
shame actually, and I believedhim really ultimately for a
little while, and I was luckythat I had a really supportive
partner that was like, actually,you know, that's not true Like
we can do this and we will makeadjustments, but we can do it.
So at that time I just did a bitof a Google search where I was
(25:18):
like disabled parenting stories,like I wanted to hear other
stories of what it was like tobe a disabled parent, and at
that time I was shocked by thelack of representation of
disabled parents But also thenarrative that was being
portrayed, which was often thatit was a burden to have a
(25:40):
disabled parent for a child.
And so that's when I was like,actually, this is something that
needs to really shift.
And so I first of all started apodcast with.
It's called ABC, but you haveABC as well in America, don't
you?
So it was like that.
So it was a podcast with them.
(26:00):
They were offering ascholarship to a disabled
journalist at the time and I hadto study journalism at
university And put to them thatwe make a podcast series about
disabled parenting, and we werevery shocked at how well it went
from people with disabilityreaching out and saying This is
(26:21):
what I needed to feel like Icould be a parent, and also
non-disabled people reaching outsaying that I And the stories
of other disabled parents in theseries had changed their mind,
that they had assumed that somepeople with disability shouldn't
and couldn't parent.
So that was like, oh okay, thisis so great, and so that's when
(26:45):
I decided that it needs to be abook.
And so it's become a bookcalled We've Got This Here in
Australia and then released inthe UK And then just very
recently in the US with variousdisabled parents from Australia,
canada, the US and the UK.
Lainie (27:03):
So you interviewed all these people for the podcast, or
was this after?
Yeah?
Eliza Hull (27:08):
so, first of all, it was the podcast that I
interviewed and went aroundAustralia and interviewed those
parents And this now is ananthology of me interviewing
different disabled parents andalso some of the parents writing
their own stories.
So if they were writers, theychose to write their own pieces
(27:30):
and some people opted to beinterviewed.
I always wanted to make some ofit interview based, mainly for
accessibility.
Some of the parents haveintellectual disabilities and
wanted to be interviewed.
That was their choice, so thatwas a thing that I wanted to
make sure it was a reallyaccessible process for people to
(27:51):
be part of.
Lainie (27:53):
Is there any stories from those interviews, from the
book which I just saw is, likeavailable everywhere now, so
very cool.
I mean we'll put the link to iton our show notes.
But, like thinking of peopleyou interviewed and the parents
with disabilities, is there anyparticular stories that stand
(28:15):
out to you that you were likewow, like this is just
unbelievable.
Eliza Hull (28:20):
I think the thing that kept surprising me was just
the common discrimination facedin the medical world, so in
hospitals.
for instance, in this in thebook there's two deaf parents
that were, i guess,congratulated And you know when
(28:41):
their child was hearing.
so, like said, you know,congratulations, they're not
like you.
And also not being giveninterpreters to even birth their
children, so they didn't havethat access to be able to know
what was happening.
Also, the stories from parentswith intellectual disability
(29:05):
where their children were takenfrom them without any adequate
support.
And I think for any parent it'squite scary to bring a child
home for the first time.
you're like you don't know whatyou're doing.
It's even you can read all thebooks but you still don't know
(29:25):
what you're doing when you firstbring a child home.
So to have 17 years later.
Estela (29:33):
Yeah, exactly.
Eliza Hull (29:34):
Totally Yeah.
To have the added complexity ofthen having an intellectual
disability and then not beinggiven any support, any education
, and then having your childtaken from you without being
given a chance, to me just feelsridiculous And I can't believe
it's still happening And I thinkthere just needs to be more,
(29:54):
more support in those spaces forthose parents.
But there are some reallyhonest stories in this book.
You know ones of a lady calledMichelin Lee who's a wheelchair
user and talking about, you know, when she fell out of her
wheelchair, out of which waspicking her child up from school
(30:14):
and feeling embarrassed for herchild, feeling ashamed and
feeling like her child didn'twant to walk beside her because
they were embarrassed, and thenrealizing that actually their
child was never embarrassedabout them, it was just they
were embarrassed aboutthemselves, like.
I think that is quite an honeststory, so that to me I always
(30:39):
get quite emotional when I readthat one because it's so honest.
Lainie (30:43):
One of the things that we carry right.
It's just, you know, when youyourself feel like insecure,
still, even if you are, youthink of yourself as a confident
person with a disability.
You know inside that innervoice, you know that you've
picked up on all the ableismover the years.
(31:04):
You your go-to is oh, it'sbecause of my disability When
any kid is embarrassed.
A lot of kids are embarrassed,you know like they just are.
That's just part of like.
They don't want anything to dowith their parents.
They simply walk out of thehouse and they don't like what
they're wearing.
It has nothing to do oftentimes with the disability, but
(31:29):
that's our automatic go-to Likeoh, that must be it, right.
Estela (31:33):
But also, you know children can be cruel and they
see a parent that looksdifferent and you know they
unfortunately they will find thesmallest thing to pick on about
a child.
And when that child is pointedout and made different because
their parent is different, theyalso have to come to terms with
ableism as a child of a parentwith a disability And they need
(31:57):
to navigate that world as welland inform others and go through
those processes, just like usmany times So, And we've talked
about, like in an episode wetalked about the gifts of
disability, right?
Lainie (32:11):
And I think in our podcast episode with Mindy
Henderson from MDA we talkedabout all you know, like how
many wonderful gifts she hasinadvertently, unintentionally,
you know, given her childrenjust by herself having a
disability.
And you know you raise, youknow our goal is all parents,
(32:33):
whether we have disabilities ornot, is to raise good human
beings that we're proud of, thatare proud of themselves.
And you know, i mean I thinkhaving parents that are
disabilities automaticallyequips you with skillsets that
you don't get, you know, in aclassroom or anywhere else.
You know, i say in your book,when you're talking and hearing,
(32:56):
and you know people are sharingtheir stories.
You know, were there gifts?
Like do you remember any of thestories?
and thinking, wow, like thischild is like going to be?
you know, like like they're solucky, you know, because they
have this parent with adisability.
Eliza Hull (33:13):
I would say all of those children actually, yeah, i
would, yeah, all of thosechildren end up being children
that are really inclusive and ofall people and kind children
and open to all.
You know diversity in all itsforms And I think that, yeah,
(33:37):
the benefits of that is reallyreally like very strong.
Within the book There's anincredible disability advocate,
Nina Tame, that's based in theUK And she's part of the book
And she has a child with herdisability cerebral palsy And I
(33:58):
think having a mum like her,when she's such a fierce
disability advocate, you canjust see that her child's
growing up in that space ofawareness and realising that
they, you know, don't need tochange.
And I can just yeah, i can justreally see how powerful that is
(34:19):
to have a mum like Nina.
So, yeah, i think, across theboard, the book really shows
that having a parent withdisability there's just so many
positives that I think you'reright, it doesn't happen for any
other reason than it just youjust kind of by having a parent
with a disability that takesplace.
(34:42):
I think I see that in my ownchild in the way that she holds
my hand, like she just alwaysgrabs my hand when we're going
across the road in case I fallover, or you know.
She sometimes will, you know,pull me a little bit when the
red light is.
You know, come on, let me go.
So she always kind of in thatspace of like wanting to look
(35:05):
out for me, and then seeing thattake place at school, where her
teacher has told me that if anychild needs anything or she's
just always there and a verykind person, i think that's
going to help her in the worldand help her be a kind adult.
Estela (35:25):
Yeah, that level of compassion.
And you know, speaking ofchildren, you kind of took your
writing skills to a youngerdemographic as well with a
second book, and this one'scoming out in September.
is that correct?
Eliza Hull (35:41):
Yeah, so it's just about to come out in the US.
It's out every mostlyeverywhere else And it's called
Come Over to My House And it'sactually, in a way, like a
sister book to where we've gotthis in that a lot of the
families that you meet and we'vegot this portrayed in Come Over
to My House.
So you'll meet a family thathas a deaf mother, another
(36:04):
family that has a blind mother,another family that has a child
that's a wheelchair user, afamily that have dwarfism, a
family that has a mother with anintellectual disability, and
you were invited inside theirhomes and realised that, yes,
they have a disability, buttheir homes are A, just like any
(36:26):
other home, but B are wonderful, colourful, fun homes that show
the adaptability and thecreativity of how people with
disability adapt in their homelives and home spaces.
Estela (36:45):
Yeah, i love the family dynamic of the book.
I feel like it's not somethingI've seen before.
Thankfully there's an increasein disability-inclusive
children's book.
but the way that you frame thisjust inviting people behind the
scenes because I don't thinkthere's a lot of books that do
that and show the family dynamicand how normal it is to each
(37:10):
family It's just inviting youinto their space and into what
joy looks like for them.
Lainie (37:21):
For sure like a little series, like a TV thing, because
in a positive reality show ofshowing when I was young there
was a show called Deedle Doors.
I think it was only in Detroitbut basically it was like a
little religious show.
Sunday morning you went intolittle kids kind of like, met
(37:44):
with a Mr Rogers kind of personand then they went off into each
room in the house like adifferent door and it showed
different people's occupationsWhen they did.
How cool would it be to have alittle TV show kids' show.
Because the idea is that whenyou watch these shows even
reality shows you're looking for, you're looking well, not
(38:06):
reality shows.
I guess when you're watchingshows you're looking to see
what's familiar and when you seethat people are just like you,
even though they don't alwayslook like you, that's the most
empowering thing for everybody.
Eliza Hull (38:21):
Absolutely yep, And I think the more that we.
I guess it was like aninvitation for people to step
inside these homes and to bepart of those homes, to take the
stigma away.
Estela (38:33):
What's the reaction been like so far?
Eliza Hull (38:36):
It really great.
I think the two parts to thatone is that when children, like
families, have reached outsaying that my child has taken
this in to read it to theirclass and that's because they
have a disability and so it wasthat representation they were
seeking.
And then also non-disabledfamilies that didn't know how to
(38:58):
have the conversation aboutdisability, didn't know what it
would be like to go to a deafperson's house, Like how do you
tell them that you're at theirfront door, like that you come
over to my house, How would youcommunicate with somebody that's
deaf if you went to their house?
All of those kind of questionsthat children and families
(39:18):
didn't know the answers to andtherefore hadn't kind of stepped
in and had those conversations.
I think it's been a reallygreat conversation starter about
disability.
Estela (39:29):
The classroom is such a oftentimes a missed opportunity
to really start the conversationaround disability inclusion.
because it's when children arenot tarnished with those stigmas
and that judgment and they'rejust at that young age where
like, oh, they're just curious,they're not really judging, but
(39:49):
they're curious and they're notafraid to ask those questions
and they want to learn.
And so it's such a formativetime to be introducing them to
things like this, because itreally does lay down the
foundation for how they view theworld, even if it's not
something that touches theirfamily.
Lainie (40:06):
What's amazing to me.
going back to you is like howmuch you are doing and how much
you've done, and like I thinkback to when we first started
this podcast and I first metEstella and like she was like
you know, one of the firstpeople I met with CMT, that I
was like, oh, she's kind of likeme.
(40:26):
And here you are with CMT allthe way in Australia.
Well, from England, you sing,you get on stage, you're an
author children's books and ofbooks for everybody and you've
done so much.
Like it's amazing.
So you know, when we talk aboutlike kids and you know how they
(40:48):
learn or can learn and the giftsthey get from parents with
disabilities, really you're theopinion of, like how you live
with your disability.
It's not just, oh, you know, iwouldn't say that all kids are
better off with parents who havedisabilities.
I would say they have a lot togain from parents who are, you
know, trying to live their bestlives despite having physical or
(41:11):
emotional, mental, whateverchallenges you know, And you
sound like you have not let thatstop you.
Yeah, yeah, I think it did.
Eliza Hull (41:23):
Yeah, i think it did for a little while, but now
definitely not, and I think thatit felt very purposeful,
actually, like when you speakyour truth and then want to
change spaces that have beenreally hard for you.
You want to change the worldfor the future generations.
Lainie (41:41):
I think that that's felt very purposeful and meaningful
And how do you deal personallywith, like the progressive
nature of our disease withsarcomery tooth, although every
type is different and noteveryone's disabilities progress
in a linear fashion or whatever.
But you know, my one of my kidswas once a singer now they're
(42:03):
not so much a singer, but youknow and and a guitar player,
and at the time she used to say,well, what's going to happen if
my hands are weak and I can'tplay guitar?
What's going to happen if myvoice, you know, my diaphragm is
weak and I can't hang.
Like how do you personally dealwith those unknowns and, as
(42:26):
since we're on the subject andabout parenting, and like how do
you explain those unknowns andhow you're dealing with them
yourself When you don't evenknow, probably to your own
children?
Eliza Hull (42:39):
I think, because I don't know if you feel this, but
because by having a disability,you have to be really great at
at navigating a world that's notfor you, so you always have to
be constantly problem solvinglike how am I going to get into
that building, or how am I goingto get up there, or how am I
going to navigate this group ofpeople that are looking at me
(43:00):
like this, or all of thosethings are just constant, being
adaptable, being creative, andyou're thinking, i think, that
because of that, it's like I'vejust learned to adapt really
quickly.
For instance, i started playing.
I've always played the piano.
Now I can't play the piano, soit's like I just have to adapt
and now I don't play pianoanymore.
(43:22):
Really, or this is ways thatI've just, like, had to.
Lainie (43:29):
I just want to start there for a second because I
don't want to minimize like thatloss, because that is a loss.
So, even though you've learnedwork, you know work around and
you've obviously, like manypeople with disabilities, like
no, you know you can't control,but you can't control It's a
huge loss if you have a gift anda talent of playing piano and
(43:51):
now you can't play piano like.
So You know, for listeners whoare out there who are thinking
about their own gifts that theymay not be able to use to their
abilities anymore, i don't wantto like.
Eliza Hull (44:06):
I don't want to.
I don't want to sound like I'multra positive, because I'm not
always ultra positive.
There are hard things, liketoday.
I tried to walk to the coffeeshop and it really really hurt
like a lot.
I was in so much pain and Ijust felt terrible Like it just
felt like the world wascrumbling at that moment.
(44:28):
So I'm not saying everything'salways fine and easy.
Sometimes it's really reallyannoying and hard And I just
wish that I could just get tothe coffee shop with my family
and not be in pain.
But I think what I have learnedto do and again, it might sound
like I'm ultra positive, but Ican't play the piano but now I
(44:52):
can move my hands in anexpressive way as I'm singing
And I feel like that's reallythat's really adding to my show.
So it's like turning it allaround and going okay, what am I
adding by not playing the piano?
What is this?
what is life doing for meinstead of against me?
I guess that's how I've triedto look at it.
Estela (45:13):
I love that.
I think I can relate in my ownway where I used to be.
I went to art school, right, iused to be.
My talent growing up obviously,was in sports.
I really prided myself on beingable to be creative in that way
with pencils and charcoal andpainting.
(45:33):
And now it's really difficultfor me to hold a pen or a pencil
, let alone draw a picture.
And so you know, i think theway I've been able to kind of
navigate that loss is thatwhat's really underneath the
ability to draw is thatcreativity.
It hasn't gone anywhere.
(45:55):
It's just been redrewed intothings like this podcast or the
work I do with H&F or the otheradvocacy workshops that we do
and all those things that,really, what I like to think,
repurpose my pain and helppeople right creatively, but
sometimes, you know, it doesjust suck.
Lainie (46:15):
Yeah, and it's interesting, and while we're on
the subject me, feel free to cutthis out.
So, but my mom passed away likefive years ago, but she had
really bad CMT, like she hadhands that were always to my
memory as a little kid.
She couldn't do a lot, whereasI'm very, very active, and my
(46:35):
kids, i don't think would saythat you know.
So I just I have all theseneedle points that my mom made.
One is of me.
It's actually funny.
It's like I have black hair andI'm holding a sex at the avenue
and I threw cheap bag And soshe must have made a portrait,
(46:56):
yeah, so anyways, i have it andI'm looking at the intricacies
of this needle point and I'mlike I have no idea, like I
don't remember myself ever beingable to a rug hook, let alone
needle point.
Like I feel like my hands werenever that steady and I would
(47:16):
never be able to hold a smallthing.
I don't know.
I wish she was around to beable to ask her, because I have
no idea if, like she definitelydid it, it was her needle point,
but it's just so interesting tome anyways.
Eliza Hull (47:29):
And I think that that really shows like we're
pretty determined.
are we like when we You?
Lainie (47:36):
know that's the question I can't get the answer to, but
I'm thinking like, oh, like,each little, each little stitch
might have taken an hour.
I have no idea.
How did she do that right?
Estela (47:47):
We find ways to adapt, and I think you continue to do
that, eliza.
whether you're playing thepiano or singing, sitting or
standing, i think it doesn'ttake away from the powerful
message that your music issharing with the world, and I
can't wait to share this episodeand your music and your books
(48:09):
with our Yes, so cool and peopleare.
Lainie (48:14):
You know, people are going to go crazy for that song
because it hits home, it's so.
I mean, you know, here I stilland I had took something
completely different away fromthe meaning of that song I
listened to and I was like, ohmy goodness, like this is, this
is me.
You know, it's really great.
We can't wait.
I can't wait for people to hearit and your book is really cool
(48:39):
.
So you know, it's the firstanthology of its kind.
We're featuring disabledparents talking about what it's
like to have children and all ofthat.
So it's all good stuff.
I'll leave my an Amazon reviewas soon as I thank you.
Please do that would be great.
It's awesome.
Thank you so much.
It's like we're meeting withjust a multifaceted artist here.
(49:01):
Everyone.
How lucky are you.
Eliza Hull (49:04):
Thank you, it makes me want to go get creative.
Lainie (49:07):
What could I do?
Estela (49:11):
Not saying I'm so grateful that you joined us and
spent some time with us.
Eliza, we wish you nothing butthe best.
We know this is just thebeginning for you and we look
forward to seeing what you donow.
Thank you so much, thank you.
Lainie (49:26):
Everyone Bye, everyone, all right wonderful.
Estela (49:31):
Hey embracers.
Thank you so much for listeningand supporting the embrace it
podcast brought to you bylaunchpad 516 studios executive,
produced by George andriopoulosand hosted by Laney ishpia and
Stella we go.
Our music and sound effects arelicensed through epidemic sound
embrace.
It is hosted with bus brown.
Lainie (49:48):
Do you have a disability related topic you'd love for us
to feature, or could someoneyou know be a fabulous guest on
our show?
we would love to hear yourcomments and feature them on our
next podcast.
So leave us a voicemail, or youcan even send us a text to 631
517 0066.
Estela (50:09):
Make sure to subscribe to this feed wherever podcasts
are available and leave us afive star review on Apple
podcast while you're at it.
Follow us at embrace itunderscore podcast on Instagram
and make sure to follow all thegreat podcast produced by
launchpad 516 studios.
Lainie (50:25):
We hope you join us next time and continue to embrace it
.
Welcome to the Embrace It series, where women
with all types of disabilitiescan be real, resourceful and
stylish.
With each episode, you'll walkor roll away with everyday tips,
life hacks and success storiesfrom community leaders and
influencers.
So take off your leg braces andstay a while with Lainey and
Estella.
Lainie (00:25):
Hi, I'm Lainey and.
Estela (00:27):
I have CMT.
I'm a neuro-muscular disorderaffecting approximately 2.6
million people worldwide.
Lainie (00:36):
That's as many as MS.
We believe disabilities shouldnever get in the way of looking
or feeling good.
Both of us wear leg braces andhave learned through our own
personal journeys to embrace it.
Estela (00:49):
Brought to you by Launchpad 516 Studios.
Each episode is designed tochallenge your own stigmas and
beliefs around disability.
We want our listeners to getthe most value for their time
spent with us, so we interviewsome of the most empowering
disability badasses in the world.
Through storytelling, personalexperiences and tips, we're all
reminded of our own strengthsand endless potential.
Lainie (01:09):
For more information and exclusive resources, check out
our websites at trend-ablecomand hnf-curorg, and don't forget
to hit the subscribe button forfuture episodes and special
promos.
Estela (01:31):
Welcome everyone to our spring episode of the Embraced
Podcast.
Hi Lainey, Hi Estella.
We are here on the cusp ofMother's Day weekend and we
might not get this out in timefor Mother's Day, But
nonetheless we definitely have abadass disability advocate mom
(01:52):
as our guest today.
Very special guest joining usfrom London.
Her name is Eliza Hull.
Welcome, Eliza, Hi, how are you?
Thanks for having me.
You're so excited to have comeacross your work and your story
and we love especiallyconnecting with the CMT
community outside of the US,because I think many times we
(02:14):
forget how big our community isand how globally diverse it is.
And we came across you onInstagram and we saw some of the
amazing work that you're doingand it seems like you're very
multifaceted talents, cover many, many different areas.
So I think, before we dive intothat, we'd love to hear a
(02:34):
little bit about your journey,your diagnosis and kind of a
little bit of your backstory.
Eliza Hull (02:40):
Well, it's so lovely to be here.
So I live in a place calledCastle Main, which is a regional
town about an hour and a halffrom Melbourne, australia.
I'm currently in England rightnow, but yeah, i have always
lived in Australia.
When I was about I think it wasabout five years old I started
(03:04):
falling over at school and myparents didn't know what was
happening.
So I was taken to many doctor'sappointments and a lot of the
conversations were about me andnot with me or to me, so I was
very confused as a child.
After being diagnosed with lotsof various conditions, i was
(03:29):
finally diagnosed withchaco-mary tooth, and the way
that it affects my life is Iwalk with a very different gait.
I still fall over a lot.
I can't get upstairs unlessthere's a handrail to lift me up
(03:50):
.
If there's no handrail, it'sabsolutely impossible for me.
I have freezing, cold legs,even on a hot summer's day, and
I mean a fair bit of pain.
About a couple of months ago Iactually broke my leg, so that
(04:10):
was an extra layer of having mydisability but then also having
a broken leg.
It was quite hard for the lastcouple of months But, funnily
enough, when I was five yearsold when I started to develop my
disability, i also started tosing And that was really a fluke
chance where I was asked tosing in a local competition with
(04:35):
my school and won a gold medalin the competition.
And I guess, when I was goingthrough so much confusion about
having a disability as a child,it was a way to not only express
myself and all the things thatI was feeling but also have
(04:56):
positive reinforcement of that.
I was able to do something thatpeople would say was like a
positive thing instead of italways being a negative.
So I guess that was how Istarted singing and I've never
looked back.
But all through my teenageyears, i think because of that
(05:19):
lack of representation, i didn'treally see anybody that walk
differently and sang or lookdifferent in being disabled.
And so in the music industry Idecided that I was going to hide
my disability as much as Icould And really just would.
Whenever I met any kind ofprospective management or agent,
(05:42):
i would sit down and hide myhands or hide the way that I
walked, because I was afraidthat I wouldn't get the
opportunity because I wasdisabled.
And it wasn't actually until Ibecame pregnant that I decided
it was time to be me decided itwas time to be authentic.
I think having kids was thereal catalyst to go.
(06:05):
Actually, i want a modelauthenticity for my children so
that they can be whoever theyare or whoever they choose to be
.
And so I guess that feeling of,i guess, family security as
well and feeling like I was in areally solid partnership, but
also just wanting to be a true,authentic self for my children,
(06:27):
was the catalyst for me not onlybeing myself, but realizing
that there was so many barriersand things to change in the
world when it came to disability.
Lainie (06:37):
Did you pass on CMT to your kids, eliza, or do you have
a different type of CMT?
And I have the most common 1A,estella for something, whatever
it is, but she doesn't pass iton.
So what about you?
Eliza Hull (06:55):
Yeah, so I guess, because there's so many types of
CMT, i've had the kind of panelblood test and never been
diagnosed with a certain type.
At this point I'm now at thestage where I could get the
extra testing done.
So I'm kind of yeah, at thatpoint where now I could go and
(07:17):
find out.
My children aren't showingsymptoms at this point.
But in saying that, i've got athree year old and an eight year
old and I started showingsymptoms when I was five and
with CMT, as we know, it canhappen at any point in
somebody's life.
So I don't know, is my answer.
Estela (07:34):
So going on to your music career, motherhood
obviously had an impact on howyou wanted to present yourself
to the world.
How did you begin to have thoseconversations with management
and just people within yournetwork?
How did that come about andwhat were the reactions?
Lainie (07:56):
I kind of just paused because Eliza isn't just like a
singer, like doing karaoke, likeEliza is like a real singer,
like a professional singer.
Right, you do concerts.
She's been featured lots ofplaces.
You're big in Australia and onthe rise and so many other
places.
So I just want to set the tonethat we're not just talking
(08:18):
about.
Well, like myself, you wouldnot want to hear me sing.
but who is attempting to justsing in a little karaoke club?
This is like real singing.
God for lively.
This is what you do.
Eliza Hull (08:32):
Yeah, that's so nice of you to say Thank you.
I guess I don't know whetheryou felt like this, but when I
decided to be myself andidentify as disabled and speak
about it, i also felt like theworld was ready for that, in
that we've now moved into thisspace where disability and
(08:53):
diversity is.
We're not at an equal level,that's for sure.
We're still living in aninaccessible world, we still
face discrimination I'm stillstared at when I'm in society
and sometimes even stopped andprayed for But we are moving
into a space where it's beingmore celebrated and more spoken
(09:15):
about.
And so I guess when I decidedto identify as disabled, the
music industry was alreadystarting to shift and
organisations are wanting to dobetter.
The areas which is like theequivalent of the Grammys are
wanting to change and have moredisability representation and
(09:38):
have a ramp up onto the stage.
But that's taken a lot ofadvocacy.
So I guess I felt like the timethat I was really ready, it
almost felt like a completeshift that society was also
ready at the same time.
I think that was complete flukeand chance.
I think it was probably a bitof both, in that it was a chance
(10:02):
that I was feeling that.
But I also think that I wasable to identify at the time
that I felt more invited andaccepted to do so.
So I think there's so much thatneeds to change and that
there's still lack ofrepresentation in festivals and
on radio, but at the same timeit's something that people are
(10:26):
really caring about, at least atleast thinking about, at least
wanting to make those changes,whether it's still quite small
changes and it takes a long time, but it's definitely happening.
Lainie (10:39):
So you know, for our listeners, who some have CMT,
some have other types ofdisabilities, you know, you are
on a stage right, like, first ofall there's the pre-part, which
is getting up on the stage,then there's balancing during
your performances and being ableto do that in a way that's
(11:02):
still entertaining and not, iwould imagine, drawing attention
to your disability, butobviously, as a singer, you want
people to pay attention to yourvoice and to get into the, you
know, into the music.
So I'm just thinking about,like, the basics of that stuff,
like so, how did you navigate it?
Like yes, the world is maybemore accepting, but you still
(11:26):
have to assert yourself eachtime, i would imagine, and say
what you need to people.
And then, how do you balanceduring a show?
Eliza Hull (11:35):
Yeah, i hold onto things.
So I like that's.
I've realized that you justthat's how I navigate my life.
Like when I'm looking atsomewhere I have to get up onto
or into, i'm always thinkingwhat can I hold on to to get
into there, onto that?
So the stage is exactly thesame.
(11:55):
So I'm holding onto my micstand, i'm holding onto my
keyboard stand to balance,trying not to fall over.
I've just done the first evershow recently where I decided to
wear because I was wearing likea really beautiful dress.
I ended up actually wearing noshoes underneath that dress.
(12:15):
It was not, it wasn't visibleto the audience.
I didn't care if it was orwasn't, but it wasn't.
But it actually helped mebecause I wasn't in shoes and
didn't and was able to kind ofhold myself up right And it
actually really helped becausesinging is quite physical And I
(12:38):
hadn't really realized thatuntil recently, that not only is
it hard to get into a venue, tofeel isolated because I can't
go and hang out with mybandmates, because I can't get
up the stairs to go and hang outwith them, to not be able to
get up on the stage, to have toget them to lift me or to crawl
up the steps to get onto thatstage.
(12:59):
But then not only that is whenyou're on the stage.
How do you stand and sing?
How do you use that whole bodyto really sing?
So I think it's hard.
I'm not going to lie, it's hardand it's exhausting And, yeah,
there are moments where I wonderif that is the right path for
(13:22):
me because it is so exhausting.
But ultimately, it's the way Iexpress myself.
It's something that I've learntto be good at, and I think that
I know how importantrepresentation is.
So I always think aboutemerging disabled artists.
(13:43):
To see somebody like them, orto see somebody that even isn't
like them but has a disabilitydoing it.
That's so powerful.
Estela (13:55):
Well, it's definitely very easy to see that it is your
passion and it is your art, andwe're going to do something
that we haven't done before.
We're going to play your latestsong, but before that I'd love
to get a little bit of abackground on the song itself.
I believe it's called RunningUnder Water And I played it
today and I was just like I wastelling Lena I'm like this is
(14:17):
really good, like this issomething I would listen to on a
regular basis.
I found the melody to bebeautiful.
I found the lyrics to bebeautiful.
It's like riding my wheelhouse.
I would love to hear where thissong came from and what the
lyrics, what you're reallytrying to express in the lyrics
and the message that you want toportray to people.
Eliza Hull (14:39):
Yeah, i guess in the first verse the lyrics start
with if these legs will not move, it's just the way it's going
to be.
And maybe I don't fit in withwhat you want me to be, because
I think that you and not evenpeople that maybe don't have a
disability, that have been toldthat they have to change to fit
(14:59):
in And that's really what thesong is about And being told
that you have to.
For me it was to.
As a child, i had to walk intoa straight line so that the
doctors could watch me walk andstudy the way that I walked And
I felt their gaze.
I felt there that intensefeeling of that I needed to
(15:21):
change, that I needed to fixmyself.
That to be me was somethingthat ought to change and needed
to be fixed ultimately And theanalogy of running underwater is
really about that feeling oflike pushing up against
(15:42):
society's view of beingdifferent and being disabled And
that ultimately it's hard andthere's so many barriers, but if
you are true to yourself, thatyou can actually push through
that and be okay in the end- AndI love that analogy Because me
(16:04):
myself I could see the two sidesof that analogy running
underwater, that resistance, butat the same time the freedom
because physically underwaterthat's the only way I know what
you're going to say.
Lainie (16:16):
That's like when you can run.
When I can run, Yeah.
And the time I would be able torun is with the gravity and the
help of water, you know, andit's the word.
Eliza Hull (16:25):
Yeah, Yeah, that's so true actually.
Yeah, you're right.
Yeah, it's beautiful.
Estela (16:29):
So we're gonna we're gonna play your song and we're
gonna let everybody kind of hearfor themselves and we're gonna
share afterwards where they candownload the song and listen to
some of your other songs as well.
Here's Eliza Ho with RunningUnder Water.
Eliza Hull (16:51):
Oh, oh, oh, oh, oh, oh, oh, oh, oh oh.
If these legs would not move,This is just the way it's gonna
be.
Well, maybe I don't fit in Withwhat you want me to be.
(17:15):
Whoa, this cookie cutterversion Is not doing me any
favors.
I don't wanna bring fuel to thefire.
I gotta get louder.
I gotta, gotta, gotta.
(17:38):
Take the weight Off me.
Show my bones for you to see,cause I'm not getting far.
I'm running on the water, causeI'm not getting far.
(18:05):
I'm running from you.
Oh, oh, oh, oh, oh oh.
I remember when I was five, theytold me to walk in a straight
(18:30):
line.
Growing up, i was always tryingto feed it, trying to be pretty
and thin to win.
I'm not somebody you wanna fix.
I gotta get louder.
I gotta, gotta, gotta.
(18:52):
I gotta, gotta, gotta.
Take the weight Off me.
Show my bones for you to see,cause I'm not getting far.
(19:16):
I'm running on the water, causeI'm not getting far.
I'm running from you.
Oh, oh, oh, oh, oh, oh, i'mrunning.
(19:40):
Oh, oh, oh, oh, oh, oh, causeI'm not getting far.
I'm running on the water, causeI'm not getting far.
I'm running from you.
(20:05):
Take the weight off me.
Show my bones for you to see.
Lainie (20:25):
Oh, gorgeous.
Estela (20:29):
I felt myself like joking up over it.
It chills.
Lainie (20:31):
Right, but like What?
is it like to listen to yourown song?
Eliza Hull (20:36):
Yeah, odd, odd, especially because it's such a I
mean, this song is only outyesterday Or today, really.
Yeah, so, odd, odd, odd to hearit back.
As an artist, you kind of gothrough waves of Going oh, is it
any good?
But to be honest, listening toit then I just felt like feeling
(20:58):
of, you know, i guess,collective power, not like just
that kind of like Pride.
You know, pride, disability,pride, a good feeling basically.
Estela (21:09):
When I hear the words take the weight off me.
I love that.
I think that's you know.
One of our missions with thispodcast is to help you.
Help you take off yourselvesThe weight that we don't even
realize we carry with us everyday.
What does that mean to you?
Eliza Hull (21:25):
Yeah, exactly that, because I think there are things
that are hard about beingdisabled.
There are things that are hardthat are caused by the wider
society, but there's also justthings that are just hard right,
like pain.
Pain is annoying, pain sucks,pain is really hard, and pain,
(21:48):
yeah, it can make me feel like Ican't do things, and that's
really hard, like even going forit, you know, just to hang out
with my family Or be able to dothings that I really want to do,
and it stops that fromhappening and that can feel
really hard at times.
And then also wider societybarriers.
Like you know, we live in areally inaccessible world.
(22:10):
We live in a world that's notbuilt for us, and we also face,
you know, attitudes that youknow discrimination, or people
that stare or people that ask,you know, certain questions That
really hurt or say things thatreally hurt.
So I guess for me it's like,you know, take, that is the
(22:32):
weight, that is the thing that Icarry around And I want that to
be taken from myself and forothers.
Estela (22:38):
And I think it's so powerful the way you speak about
disability.
And also you're not only asongwriter but you're an author,
and you've written two books sofar.
One of them is geared moretowards adults and shining a
light on disabled adults And theparenting world, and then one
(22:59):
is geared more towards children.
Where did those books come from?
Assuming they were inspired byyour own experience of
motherhood with a disability?
Eliza Hull (23:09):
Yeah.
So when I met my partner myhusband to be, i was really
excited to start a family AndI'd always wanted to have kids
And luckily I'd grown up in afamily where it had been
accepted, and kind of almostlike expected really, that I
would have children.
Mum and dad were like, yeah, wewant to grant children.
(23:31):
So I just thought that was justgoing to be a possibility for
someone like me.
I knew that it would bechallenging And I also I had
worried about passing on mydisability, not because I didn't
like I wasn't accepting ofmyself at that time.
(23:51):
It was more that I knew thatthe world was hard.
So it was like, if it's hardfor me, what would that be like
for them?
But ultimately I knew that Iwas the most experienced person
to make that decision, becauseI'd lived with my disability all
my life And I decided, yeah,i'm going to do it anyway.
I know what it's like and I canactually be there for them, i
(24:16):
can help them through navigatingan inaccessible world And I
have that experience.
But when I went to myneurologist and said that's what
I wanted to do, i wanted tostart a family, and he second
guessed me and said that hedidn't think that I could do it
And he was worried that I wouldbecause I fall over a lot, that
(24:36):
I would fall over and hurt mybaby Being pregnant, that I
would fall over and that Iwouldn't be able to manage.
And then said is there anyother way that you could
potentially not have a child Butstill have children in your
life?
And at that moment I just feltvery vulnerable and a lot of
(24:57):
shame actually, and I believedhim really ultimately for a
little while, and I was luckythat I had a really supportive
partner that was like, actually,you know, that's not true Like
we can do this and we will makeadjustments, but we can do it.
So at that time I just did a bitof a Google search where I was
(25:18):
like disabled parenting stories,like I wanted to hear other
stories of what it was like tobe a disabled parent, and at
that time I was shocked by thelack of representation of
disabled parents But also thenarrative that was being
portrayed, which was often thatit was a burden to have a
(25:40):
disabled parent for a child.
And so that's when I was like,actually, this is something that
needs to really shift.
And so I first of all started apodcast with.
It's called ABC, but you haveABC as well in America, don't
you?
So it was like that.
So it was a podcast with them.
(26:00):
They were offering ascholarship to a disabled
journalist at the time and I hadto study journalism at
university And put to them thatwe make a podcast series about
disabled parenting, and we werevery shocked at how well it went
from people with disabilityreaching out and saying This is
(26:21):
what I needed to feel like Icould be a parent, and also
non-disabled people reaching outsaying that I And the stories
of other disabled parents in theseries had changed their mind,
that they had assumed that somepeople with disability shouldn't
and couldn't parent.
So that was like, oh okay, thisis so great, and so that's when
(26:45):
I decided that it needs to be abook.
And so it's become a bookcalled We've Got This Here in
Australia and then released inthe UK And then just very
recently in the US with variousdisabled parents from Australia,
canada, the US and the UK.
Lainie (27:03):
So you interviewed all these people for the podcast, or
was this after?
Yeah?
Eliza Hull (27:08):
so, first of all, it was the podcast that I
interviewed and went aroundAustralia and interviewed those
parents And this now is ananthology of me interviewing
different disabled parents andalso some of the parents writing
their own stories.
So if they were writers, theychose to write their own pieces
(27:30):
and some people opted to beinterviewed.
I always wanted to make some ofit interview based, mainly for
accessibility.
Some of the parents haveintellectual disabilities and
wanted to be interviewed.
That was their choice, so thatwas a thing that I wanted to
make sure it was a reallyaccessible process for people to
(27:51):
be part of.
Lainie (27:53):
Is there any stories from those interviews, from the
book which I just saw is, likeavailable everywhere now, so
very cool.
I mean we'll put the link to iton our show notes.
But, like thinking of peopleyou interviewed and the parents
with disabilities, is there anyparticular stories that stand
(28:15):
out to you that you were likewow, like this is just
unbelievable.
Eliza Hull (28:20):
I think the thing that kept surprising me was just
the common discrimination facedin the medical world, so in
hospitals.
for instance, in this in thebook there's two deaf parents
that were, i guess,congratulated And you know when
(28:41):
their child was hearing.
so, like said, you know,congratulations, they're not
like you.
And also not being giveninterpreters to even birth their
children, so they didn't havethat access to be able to know
what was happening.
Also, the stories from parentswith intellectual disability
(29:05):
where their children were takenfrom them without any adequate
support.
And I think for any parent it'squite scary to bring a child
home for the first time.
you're like you don't know whatyou're doing.
It's even you can read all thebooks but you still don't know
(29:25):
what you're doing when you firstbring a child home.
So to have 17 years later.
Estela (29:33):
Yeah, exactly.
Eliza Hull (29:34):
Totally Yeah.
To have the added complexity ofthen having an intellectual
disability and then not beinggiven any support, any education
, and then having your childtaken from you without being
given a chance, to me just feelsridiculous And I can't believe
it's still happening And I thinkthere just needs to be more,
(29:54):
more support in those spaces forthose parents.
But there are some reallyhonest stories in this book.
You know ones of a lady calledMichelin Lee who's a wheelchair
user and talking about, you know, when she fell out of her
wheelchair, out of which waspicking her child up from school
(30:14):
and feeling embarrassed for herchild, feeling ashamed and
feeling like her child didn'twant to walk beside her because
they were embarrassed, and thenrealizing that actually their
child was never embarrassedabout them, it was just they
were embarrassed aboutthemselves, like.
I think that is quite an honeststory, so that to me I always
(30:39):
get quite emotional when I readthat one because it's so honest.
Lainie (30:43):
One of the things that we carry right.
It's just, you know, when youyourself feel like insecure,
still, even if you are, youthink of yourself as a confident
person with a disability.
You know inside that innervoice, you know that you've
picked up on all the ableismover the years.
(31:04):
You your go-to is oh, it'sbecause of my disability When
any kid is embarrassed.
A lot of kids are embarrassed,you know like they just are.
That's just part of like.
They don't want anything to dowith their parents.
They simply walk out of thehouse and they don't like what
they're wearing.
It has nothing to do oftentimes with the disability, but
(31:29):
that's our automatic go-to Likeoh, that must be it, right.
Estela (31:33):
But also, you know children can be cruel and they
see a parent that looksdifferent and you know they
unfortunately they will find thesmallest thing to pick on about
a child.
And when that child is pointedout and made different because
their parent is different, theyalso have to come to terms with
ableism as a child of a parentwith a disability And they need
(31:57):
to navigate that world as welland inform others and go through
those processes, just like usmany times So, And we've talked
about, like in an episode wetalked about the gifts of
disability, right?
Lainie (32:11):
And I think in our podcast episode with Mindy
Henderson from MDA we talkedabout all you know, like how
many wonderful gifts she hasinadvertently, unintentionally,
you know, given her childrenjust by herself having a
disability.
And you know you raise, youknow our goal is all parents,
(32:33):
whether we have disabilities ornot, is to raise good human
beings that we're proud of, thatare proud of themselves.
And you know, i mean I thinkhaving parents that are
disabilities automaticallyequips you with skillsets that
you don't get, you know, in aclassroom or anywhere else.
You know, i say in your book,when you're talking and hearing,
(32:56):
and you know people are sharingtheir stories.
You know, were there gifts?
Like do you remember any of thestories?
and thinking, wow, like thischild is like going to be?
you know, like like they're solucky, you know, because they
have this parent with adisability.
Eliza Hull (33:13):
I would say all of those children actually, yeah, i
would, yeah, all of thosechildren end up being children
that are really inclusive and ofall people and kind children
and open to all.
You know diversity in all itsforms And I think that, yeah,
(33:37):
the benefits of that is reallyreally like very strong.
Within the book There's anincredible disability advocate,
Nina Tame, that's based in theUK And she's part of the book
And she has a child with herdisability cerebral palsy And I
(33:58):
think having a mum like her,when she's such a fierce
disability advocate, you canjust see that her child's
growing up in that space ofawareness and realising that
they, you know, don't need tochange.
And I can just yeah, i can justreally see how powerful that is
(34:19):
to have a mum like Nina.
So, yeah, i think, across theboard, the book really shows
that having a parent withdisability there's just so many
positives that I think you'reright, it doesn't happen for any
other reason than it just youjust kind of by having a parent
with a disability that takesplace.
(34:42):
I think I see that in my ownchild in the way that she holds
my hand, like she just alwaysgrabs my hand when we're going
across the road in case I fallover, or you know.
She sometimes will, you know,pull me a little bit when the
red light is.
You know, come on, let me go.
So she always kind of in thatspace of like wanting to look
(35:05):
out for me, and then seeing thattake place at school, where her
teacher has told me that if anychild needs anything or she's
just always there and a verykind person, i think that's
going to help her in the worldand help her be a kind adult.
Estela (35:25):
Yeah, that level of compassion.
And you know, speaking ofchildren, you kind of took your
writing skills to a youngerdemographic as well with a
second book, and this one'scoming out in September.
is that correct?
Eliza Hull (35:41):
Yeah, so it's just about to come out in the US.
It's out every mostlyeverywhere else And it's called
Come Over to My House And it'sactually, in a way, like a
sister book to where we've gotthis in that a lot of the
families that you meet and we'vegot this portrayed in Come Over
to My House.
So you'll meet a family thathas a deaf mother, another
(36:04):
family that has a blind mother,another family that has a child
that's a wheelchair user, afamily that have dwarfism, a
family that has a mother with anintellectual disability, and
you were invited inside theirhomes and realised that, yes,
they have a disability, buttheir homes are A, just like any
(36:26):
other home, but B are wonderful, colourful, fun homes that show
the adaptability and thecreativity of how people with
disability adapt in their homelives and home spaces.
Estela (36:45):
Yeah, i love the family dynamic of the book.
I feel like it's not somethingI've seen before.
Thankfully there's an increasein disability-inclusive
children's book.
but the way that you frame thisjust inviting people behind the
scenes because I don't thinkthere's a lot of books that do
that and show the family dynamicand how normal it is to each
(37:10):
family It's just inviting youinto their space and into what
joy looks like for them.
Lainie (37:21):
For sure like a little series, like a TV thing, because
in a positive reality show ofshowing when I was young there
was a show called Deedle Doors.
I think it was only in Detroitbut basically it was like a
little religious show.
Sunday morning you went intolittle kids kind of like, met
(37:44):
with a Mr Rogers kind of personand then they went off into each
room in the house like adifferent door and it showed
different people's occupationsWhen they did.
How cool would it be to have alittle TV show kids' show.
Because the idea is that whenyou watch these shows even
reality shows you're looking for, you're looking well, not
(38:06):
reality shows.
I guess when you're watchingshows you're looking to see
what's familiar and when you seethat people are just like you,
even though they don't alwayslook like you, that's the most
empowering thing for everybody.
Eliza Hull (38:21):
Absolutely yep, And I think the more that we.
I guess it was like aninvitation for people to step
inside these homes and to bepart of those homes, to take the
stigma away.
Estela (38:33):
What's the reaction been like so far?
Eliza Hull (38:36):
It really great.
I think the two parts to thatone is that when children, like
families, have reached outsaying that my child has taken
this in to read it to theirclass and that's because they
have a disability and so it wasthat representation they were
seeking.
And then also non-disabledfamilies that didn't know how to
(38:58):
have the conversation aboutdisability, didn't know what it
would be like to go to a deafperson's house, Like how do you
tell them that you're at theirfront door, like that you come
over to my house, How would youcommunicate with somebody that's
deaf if you went to their house?
All of those kind of questionsthat children and families
(39:18):
didn't know the answers to andtherefore hadn't kind of stepped
in and had those conversations.
I think it's been a reallygreat conversation starter about
disability.
Estela (39:29):
The classroom is such a oftentimes a missed opportunity
to really start the conversationaround disability inclusion.
because it's when children arenot tarnished with those stigmas
and that judgment and they'rejust at that young age where
like, oh, they're just curious,they're not really judging, but
(39:49):
they're curious and they're notafraid to ask those questions
and they want to learn.
And so it's such a formativetime to be introducing them to
things like this, because itreally does lay down the
foundation for how they view theworld, even if it's not
something that touches theirfamily.
Lainie (40:06):
What's amazing to me.
going back to you is like howmuch you are doing and how much
you've done, and like I thinkback to when we first started
this podcast and I first metEstella and like she was like
you know, one of the firstpeople I met with CMT, that I
was like, oh, she's kind of likeme.
(40:26):
And here you are with CMT allthe way in Australia.
Well, from England, you sing,you get on stage, you're an
author children's books and ofbooks for everybody and you've
done so much.
Like it's amazing.
So you know, when we talk aboutlike kids and you know how they
(40:48):
learn or can learn and the giftsthey get from parents with
disabilities, really you're theopinion of, like how you live
with your disability.
It's not just, oh, you know, iwouldn't say that all kids are
better off with parents who havedisabilities.
I would say they have a lot togain from parents who are, you
know, trying to live their bestlives despite having physical or
(41:11):
emotional, mental, whateverchallenges you know, And you
sound like you have not let thatstop you.
Yeah, yeah, I think it did.
Eliza Hull (41:23):
Yeah, i think it did for a little while, but now
definitely not, and I think thatit felt very purposeful,
actually, like when you speakyour truth and then want to
change spaces that have beenreally hard for you.
You want to change the worldfor the future generations.
Lainie (41:41):
I think that that's felt very purposeful and meaningful
And how do you deal personallywith, like the progressive
nature of our disease withsarcomery tooth, although every
type is different and noteveryone's disabilities progress
in a linear fashion or whatever.
But you know, my one of my kidswas once a singer now they're
(42:03):
not so much a singer, but youknow and and a guitar player,
and at the time she used to say,well, what's going to happen if
my hands are weak and I can'tplay guitar?
What's going to happen if myvoice, you know, my diaphragm is
weak and I can't hang.
Like how do you personally dealwith those unknowns and, as
(42:26):
since we're on the subject andabout parenting, and like how do
you explain those unknowns andhow you're dealing with them
yourself When you don't evenknow, probably to your own
children?
Eliza Hull (42:39):
I think, because I don't know if you feel this, but
because by having a disability,you have to be really great at
at navigating a world that's notfor you, so you always have to
be constantly problem solvinglike how am I going to get into
that building, or how am I goingto get up there, or how am I
going to navigate this group ofpeople that are looking at me
(43:00):
like this, or all of thosethings are just constant, being
adaptable, being creative, andyou're thinking, i think, that
because of that, it's like I'vejust learned to adapt really
quickly.
For instance, i started playing.
I've always played the piano.
Now I can't play the piano, soit's like I just have to adapt
and now I don't play pianoanymore.
(43:22):
Really, or this is ways thatI've just, like, had to.
Lainie (43:29):
I just want to start there for a second because I
don't want to minimize like thatloss, because that is a loss.
So, even though you've learnedwork, you know work around and
you've obviously, like manypeople with disabilities, like
no, you know you can't control,but you can't control It's a
huge loss if you have a gift anda talent of playing piano and
(43:51):
now you can't play piano like.
So You know, for listeners whoare out there who are thinking
about their own gifts that theymay not be able to use to their
abilities anymore, i don't wantto like.
Eliza Hull (44:06):
I don't want to.
I don't want to sound like I'multra positive, because I'm not
always ultra positive.
There are hard things, liketoday.
I tried to walk to the coffeeshop and it really really hurt
like a lot.
I was in so much pain and Ijust felt terrible Like it just
felt like the world wascrumbling at that moment.
(44:28):
So I'm not saying everything'salways fine and easy.
Sometimes it's really reallyannoying and hard And I just
wish that I could just get tothe coffee shop with my family
and not be in pain.
But I think what I have learnedto do and again, it might sound
like I'm ultra positive, but Ican't play the piano but now I
(44:52):
can move my hands in anexpressive way as I'm singing
And I feel like that's reallythat's really adding to my show.
So it's like turning it allaround and going okay, what am I
adding by not playing the piano?
What is this?
what is life doing for meinstead of against me?
I guess that's how I've triedto look at it.
Estela (45:13):
I love that.
I think I can relate in my ownway where I used to be.
I went to art school, right, iused to be.
My talent growing up obviously,was in sports.
I really prided myself on beingable to be creative in that way
with pencils and charcoal andpainting.
(45:33):
And now it's really difficultfor me to hold a pen or a pencil
, let alone draw a picture.
And so you know, i think theway I've been able to kind of
navigate that loss is thatwhat's really underneath the
ability to draw is thatcreativity.
It hasn't gone anywhere.
(45:55):
It's just been redrewed intothings like this podcast or the
work I do with H&F or the otheradvocacy workshops that we do
and all those things that,really, what I like to think,
repurpose my pain and helppeople right creatively, but
sometimes, you know, it doesjust suck.
Lainie (46:15):
Yeah, and it's interesting, and while we're on
the subject me, feel free to cutthis out.
So, but my mom passed away likefive years ago, but she had
really bad CMT, like she hadhands that were always to my
memory as a little kid.
She couldn't do a lot, whereasI'm very, very active, and my
(46:35):
kids, i don't think would saythat you know.
So I just I have all theseneedle points that my mom made.
One is of me.
It's actually funny.
It's like I have black hair andI'm holding a sex at the avenue
and I threw cheap bag And soshe must have made a portrait,
(46:56):
yeah, so anyways, i have it andI'm looking at the intricacies
of this needle point and I'mlike I have no idea, like I
don't remember myself ever beingable to a rug hook, let alone
needle point.
Like I feel like my hands werenever that steady and I would
(47:16):
never be able to hold a smallthing.
I don't know.
I wish she was around to beable to ask her, because I have
no idea if, like she definitelydid it, it was her needle point,
but it's just so interesting tome anyways.
Eliza Hull (47:29):
And I think that that really shows like we're
pretty determined.
are we like when we You?
Lainie (47:36):
know that's the question I can't get the answer to, but
I'm thinking like, oh, like,each little, each little stitch
might have taken an hour.
I have no idea.
How did she do that right?
Estela (47:47):
We find ways to adapt, and I think you continue to do
that, eliza.
whether you're playing thepiano or singing, sitting or
standing, i think it doesn'ttake away from the powerful
message that your music issharing with the world, and I
can't wait to share this episodeand your music and your books
(48:09):
with our Yes, so cool and peopleare.
Lainie (48:14):
You know, people are going to go crazy for that song
because it hits home, it's so.
I mean, you know, here I stilland I had took something
completely different away fromthe meaning of that song I
listened to and I was like, ohmy goodness, like this is, this
is me.
You know, it's really great.
We can't wait.
I can't wait for people to hearit and your book is really cool
(48:39):
.
So you know, it's the firstanthology of its kind.
We're featuring disabledparents talking about what it's
like to have children and all ofthat.
So it's all good stuff.
I'll leave my an Amazon reviewas soon as I thank you.
Please do that would be great.
It's awesome.
Thank you so much.
It's like we're meeting withjust a multifaceted artist here.
(49:01):
Everyone.
How lucky are you.
Eliza Hull (49:04):
Thank you, it makes me want to go get creative.
Lainie (49:07):
What could I do?
Estela (49:11):
Not saying I'm so grateful that you joined us and
spent some time with us.
Eliza, we wish you nothing butthe best.
We know this is just thebeginning for you and we look
forward to seeing what you donow.
Thank you so much, thank you.
Lainie (49:26):
Everyone Bye, everyone, all right wonderful.
Estela (49:31):
Hey embracers.
Thank you so much for listeningand supporting the embrace it
podcast brought to you bylaunchpad 516 studios executive,
produced by George andriopoulosand hosted by Laney ishpia and
Stella we go.
Our music and sound effects arelicensed through epidemic sound
embrace.
It is hosted with bus brown.
Lainie (49:48):
Do you have a disability related topic you'd love for us
to feature, or could someoneyou know be a fabulous guest on
our show?
we would love to hear yourcomments and feature them on our
next podcast.
So leave us a voicemail, or youcan even send us a text to 631
517 0066.
Estela (50:09):
Make sure to subscribe to this feed wherever podcasts
are available and leave us afive star review on Apple
podcast while you're at it.
Follow us at embrace itunderscore podcast on Instagram
and make sure to follow all thegreat podcast produced by
launchpad 516 studios.
Lainie (50:25):
We hope you join us next time and continue to embrace it
.
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