June 24, 2025 • 24 mins
This week on In Plain Sight, we revisit a fabulous conversation from the beginning of our program's journey with the very talented Eliza Hull, musical artist, writer, journalist, and disability advocate based in Victoria. They have a fascinating chat in which Eliza openly shares insights about her struggles and successes.
Be sure to connect with Eliza through her website or Facebook page. You can view the video clip spoken about during the interview for 'Running Underwater' on YouTube. Plus, you can find out more about Eliza's books here on her publisher's website. Be sure to look out for her future book releases.
Thanks to Andrew Williams, who is standing in as Simon's co-host and producer in Abby Green's absence.
Support Vision Australia Radio: https://www.visionaustralia.org/donate
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
S1 (00:07):
Hello, I'm Simon Chong and welcome to In Plain Sight,
a program where we highlight people who are making a
difference and impact within the disability sector and their community.
We shine a light on those who otherwise would be
hidden in plain sight. And it's a pleasure to bring
you these programmes on a weekly basis here on Vision
Australia Radio. Thanks for joining us this week. Slightly different
(00:30):
because my friend and colleague and co-host producer Abby is
away for a while. So I've got a new producer
sitting in with me for now, and his name is
Andrew Williams. I'd like to welcome Andrew to the program now. Hello, Andrew.
S2 (00:43):
Hi, Simon. How are you going?
S1 (00:45):
I'm going. Well, Andrew, can you tell the listener who
we've got coming up on today's show.
S2 (00:50):
Today we'll be hearing from Eliza Hull, who's a musician
and author and disability advocate.
S1 (00:56):
And it would be great to share that story with
you coming up very shortly. Eliza is a fascinating woman
with so many interests that are all impacting the lives
of many, many people, and also a great demonstration of
the different ways people can be advocates and be strong
leaders within their community. It also demonstrates within Eliza's interview
(01:19):
that sometimes people living with a disability have to be
an advocate just by doing everyday activities and be an
ordinary day to day person, because they're always having to
change something in their world to make it easier and
better and more accessible for themselves and others. And this
(01:40):
is why I really appreciate Eliza's story, and it's pleasure
to bring it to you now. Today I'm really excited
to welcome our guest, Eliza Hull. Eliza is a disability advocate,
musician and author, and many other things. And I'd like
to welcome Eliza to the show today. Thank you. Eliza.
S3 (02:01):
Thank you so much for having me.
S1 (02:03):
Now, Eliza, you're one of those really annoying people that
does so many things, and you do them all so
very well. How is that possible?
S3 (02:14):
Yeah. Uh, I don't know. Sometimes I do wonder myself. Um,
I guess I, you know, I, I'm a hard worker
and I'm really passionate about certain things, like writing and
creating music. Yeah. I feel like, you know, when you
have a purpose, you work really hard to reach your goals.
And so, yeah, feel passionate about what I do, and
(02:36):
that's why I seem to fit it all in. But,
you know, there are times when I feel really tired
because I'm juggling a lot, but I love what I do.
S1 (02:44):
That's excellent. I would like to start with the music.
I've been listening to your EP. Um, remind me again
the title of your last EP that was released.
S3 (02:52):
Here They Come.
S1 (02:53):
It's called. Yeah. That's right. I was really intrigued listening
to the song Island when I was just casually listening
to the song. I thought it was a love song.
And then over a few listens, I really liked the
line I am an island and you are the tide
and you consume me. Can you tell me a little
bit about your song?
S3 (03:13):
Yeah, I wrote that song with a great songwriter called
She Goes under the name of Gordi, which is spelled
g o r d I. And she was someone that
I really loved listening to, so it was pretty great
to be in the writing room with her. The song
is about similar experiences that we both had. She had
an experience where she felt both invisible and visible all
(03:36):
at once, which I know sounds kind of odd, but, um,
you know, sometimes when you have she doesn't have a disability.
But it was about her own experience. For me, it
was very much related to having a disability and how
sometimes when you're in a space and you have a disability,
you can feel almost ignored and pushed to the side.
(03:57):
But then at the same time, you can feel really visible,
like everyone's looking at you or, um, that kind of
feeling of like being on show. And so I guess
that was what the song is about. And there was
a particular experience where I was about to win an award,
a music award, and I realized that I couldn't get
(04:19):
up onto the stage because my disability is Charcot-Marie-Tooth, and
it means that I walk differently. And I really struggled
getting upstairs. Like, it's very impossible for me to get
upstairs unless, you know, there's really great railing on both
sides on my left and right and I can pull
myself up. But on this particular stage, there was just
(04:40):
stairs up onto the stage and no railing. I was like,
oh gosh, how am I going to accept this award?
And so I kind of felt like the analogy of
feeling like I was an island and like that kind
of emotion washing over me was just feeling like I'd
been really forgotten about. And, um, like quite kind of
(05:01):
feeling quite emotional that here I was at a really
beautiful part of my career and being acknowledged for my
work in music, but not being able to get up
onto the stage. Yeah. So it was. Yeah, that, that
that's what that song's about.
S1 (05:16):
The next song that I wanted to ask you about,
which is the title song, Here They Come. It was
such a provocative song, and there's a lot of running
in to and fro in that. I'm going, what's going on?
Who's she running from? Who's she running to? What? Can
you tell me a little bit about that song, please?
S3 (05:32):
I guess that song is about, um. You know, I
feel like over the years we grow and learn more
about ourselves. And I think Here They Come was kind
of like me saying, well, actually, like, there's nothing to
fear about being somebody that's, you know, classed as different.
And it's about that kind of feeling of unravelling and,
(05:54):
and coming out of my shell and then, you know,
using that. Here they come. They're running Down the hill
was actually kind of an idea of all of us
that have potentially been marginalized, pushed to the side, people
with disability. I kind of pictured us all fighting for
our rights and coming forward and being okay with who
(06:15):
we are. And I kind of just saw it as
a really powerful analogy of, yeah, coming, coming down that hill,
running down that hill and feeling like, you know, here
we are, here we come, and we're not going to
hide anymore.
S1 (06:28):
That's excellent. Thank you very much for that. You briefly
mentioned the name of your disability a minute ago. Can
you tell us a little bit about that and how
that looks for you?
S3 (06:38):
Yeah. So I have a condition called Charcot-Marie-Tooth, and I've
had that since I was five years old. It affects
me the way that I walk. Um, I fall over
a bit. I find it hard to get upstairs. I'm
often freezing cold, even on a hot summer's day, because
I can't regulate my temperature very well. It affects me
all different ways.
S1 (06:59):
And so you don't feel you don't need to use
a wheelchair?
S3 (07:02):
No, not at the moment. I have you know, there's
been times where I've used it on and off. Like,
for instance, last year I used it for a little
while because I with my disability, I'm also prone to
break more. And I did break a bone last year
and used a wheelchair during that time. And I guess
also when I've had surgery operations on my legs and feet,
I've also used a wheelchair, but at this point in
(07:23):
time I don't use one and I don't worry about
using one in the future. I kind of, I think
because we are in such a great space, I know
my family certainly, certainly were worried about me being a
wheelchair user, whereas now I think because we are seeing
that great positive representation of just, you know, wonderful people
that are really proud of using a wheelchair, that just
(07:45):
makes you feel less alone in using one and feeling
okay about it. And I think my disability is what's
classed as degenerative. So it it gets worse over time. Um,
so yeah, there's definitely a possible chance that at one
point I will be a wheelchair user. And I think
because of all the great disability advocates that have paved
the way, I'm not afraid of that.
S1 (08:06):
So that leads me to my next question. Living with
a disability can be difficult in itself, and we're often
having to explain ourselves and having to fight for this
and fight for that. Then to take that extra step,
to actually decide not only to fight for yourself, but
to fight and to advocate for others as well. How
(08:27):
did you move into that space?
S3 (08:29):
It really came about through an ABC scholarship that was
being offered with, if you're regionally based and you had
an idea to create an ABC series, and I had
an idea that was about parenting with disability because I, uh,
at the time had just had a child. And I
couldn't believe, like when I looked online, to just hear
(08:50):
some other stories from parents that were disabled, there wasn't
anything out there, and in fact it was pretty grim.
It was like a lot of stories that were saying that,
you know, to have to be a child that had
a parent with a disability would be a real burden
on you. And I was like, what? This is this
can't be right. So I applied for the ABC scholarship
(09:10):
and was the recipient of the first one. My idea
was called We've Got This, and it was about parenting
with disability. And I traveled around the country interviewing various
parents who identified as deaf, disabled, chronically ill, blind, um,
and just shared their stories about what it was like
to be a parent with disability. Um, and then I
(09:33):
turned it into a book. And so it became a
book here in Australia and then went on to become
an international book with parents from England and America and Canada.
And it's yeah, it's kind of surreal when I, when
I talk about it, I'm like, wow, I can't I
kind of can't believe it came true, that dream. But
it did. And I find it really powerful when people
(09:56):
reach out and say, oh, I've just discovered the book. And,
you know, I'm thinking about being a parent. And I
was really worried about being a parent. So this is
the book that I, that I need. That feels really
meaningful for me. And I think, you know, because I
did feel pretty alone and my I definitely, um, dealt
with medical stigma and medical professionals saying that they didn't
(10:18):
think I could be a parent or maybe shouldn't be.
So I knew what that was like to be made,
to feel like you shouldn't be a parent when you
when you have a disability. So I just hope that
it reaches the people that need it and and hopefully, yeah,
changes those misconceptions about being a parent with disability.
S1 (10:35):
I discovered on the Vision Australia library app that I
downloaded your books the other day, and I was really
intrigued and pleased to hear that you actually read your
for the audio book. The book. We've got this. And
it was so I mean, I listened to the forward
and I thought, that's, uh, that's a pretty heavy story
(10:58):
right there that forward. But your introduction, that was uh,
so moving and so warming at the same time.
S3 (11:07):
No thank you. Yeah. That means a lot. And yeah,
I was really proud to have read the audiobook like,
it was it was tough, I'm not gonna lie. Like,
I probably underestimated how long that was going to take
to read the whole book. Um, but I really enjoyed it.
And the only. Yeah, I guess bad thing is that
(11:27):
the international version doesn't have an audiobook attached to it,
because I just didn't see the need for it. And
I was like, what this is, it's just so, in
my opinion, really ridiculous because there's so many obviously so many, um,
you know, people that need audiobooks. I yeah, but that's
just something I can't control for the international version.
S1 (11:47):
Which leads me to a term that I've heard you
use a number of times in different places, and a
term that some of my activist friends use. Ableism. Can
you tell me and the audience your version of what
that term ableism and ableist means?
S3 (12:03):
So ableism is, I guess, discrimination against people with disability.
It's it can happen in all different ways. It can
happen in, you know, physical barriers that we may face. So,
for instance, if I arrive at a venue and I
can't get in because there's steps, I think that is
ableism or, you know, the attitudes that we face. So
(12:23):
any stigma or discrimination.
S1 (12:26):
So ableism, just a term that we put on discrimination against.
S3 (12:31):
Exactly. Yeah. Yeah.
S1 (12:33):
Now, as a disability advocate and a performer and an
author and all the other things that you do, do
you find it stressful to be a role model and
to be an advocate for people with disabilities in the
roles that you play?
S3 (12:48):
I have noticed at times I've felt quite burnt out
by it. You know, especially when you're repeating a story
quite a lot. It can feel like. Yeah, just tiring.
But then there's other times where I really still to
this day, absolutely enjoy it and feel so lucky to
share my story. And a lot of people don't get
to share their story. So I definitely feel privileged and
(13:12):
honoured with within that, and I get a real kick
out of it when people write to me and, uh,
you know, when children and parents will reach out, uh,
you know, through their parents and say that I wrote
a children's book called Come Over to My House.
S1 (13:27):
Tell us about that.
S3 (13:27):
It's about. Yeah, it's about various families. Uh, it invites
children into the lives of parents that are disabled, autistic, blind.
There's a blind mother, a deaf mother, a child that's
a wheelchair user. You know, I guess it just normalizes
disability and also just shows that these families have really,
(13:48):
you know, interesting, great lives and that disability is a
part of that. But it doesn't take away from who
they are as people in these homes. And a lot
of kids, through their parents will reach out and say
that they love the book or that it started conversations
they hadn't had before. But my favorite is when children,
you know, might go up to a teacher and say,
(14:08):
I can see myself in that book and I've, I
feel okay about my disability. And that to me is
like very meaningful and means that the book has done
its job because that's what it's all about. Like, I
feel like as a young child, it was really hard
to have a disability when there wasn't any books out
there that represented us. And I would have loved to
(14:30):
have had a book like come over to my house
in my home, so that then I just didn't feel
like I was so different. And that difference was was negative.
I think having that representation is so powerful. So I guess,
you know, to answer your question, sometimes it can be tiring,
but ultimately I feel really lucky to be able to
share my story and potentially help and change other people's
(14:53):
minds about disability.
S1 (14:54):
I also wanted to ask you, sort of following on
from the ableism question was, can you tell us what
you think about disability pride? And I've heard you mention,
I think you said in the introduction to your book
about being proud of being disabled, which to a lot
of people would sound quite jarring. How can you be
be proud of being a disabled person kind of thing? Yeah.
S3 (15:17):
Yeah, yeah. I mean, even my mum was like, I
don't really like when you say that I'm, I have
I'm proud to have a disability. I think that that
comes down to a maybe us just never hearing that.
Like it's almost like two contrasting ideas to have a
disability and be proud of it. But I think also
(15:37):
it's kind of for her. Sounded like I was, um,
you know, had pride, like there was some sort of
ego attached with that pride. And that's not what disability
pride is for me. It's nothing to do with my ego.
It's the opposite. It's kind of for me, it's about
being with others and feeling proud about being part of
(15:58):
a community. And I love, like some of my show's
greatest thing really, is the fact that I know there's
going to be so many people with disability in the
one room, and it just feels so good. Like we
just after the show, we hang, we hang out, and
it feels like really unifying to be part of a collective.
And that to me is what disability pride means. It
(16:20):
means being together and pushing up against that kind of
narrative that actually it's, you know, that there's nothing wrong
with being disabled. In fact, it can really add to
your life and to your sense of self.
S2 (16:36):
You're listening to In Plain Sight on Vision Australia Radio
with me, Andrew Williams and your host Simon Chong. Today
we're joined by musician, author and disability advocate Eliza Hull.
S3 (16:49):
I think when you're young and growing up like you're
already we all, we all were like struggling whether you
have a disability or not. You know, there's so many
changes that happen to your body and you want to,
you know, fit in. You want to be part of
the cool, cool group at school. You don't want to
be left out. And I think that that's very common
(17:11):
for everybody. But when you have a disability, it just
adds that extra layer in the mix of like, oh,
I don't want to stand out. I don't want people
to notice that I'm different. I don't want to be
called out for being different. And so in in any
way possible, I just hid it as much as I
could never kind of identified with that word disability, because
(17:31):
it was not really something that was spoken about in
that way. So for me, it was always, I have
a leg problem. Um, even though my disability affects my
whole body, I guess my legs are the most prominent
visible part of my disability. So that's how I would
identify as just saying I had a problem. I guess
now it's like so good not to hide it and
(17:53):
so good to just be myself and celebrate who I
am and just feels like a weight off my shoulders, actually,
like so. Yeah. And I think that just comes over time.
And when you grow and you get older, but also,
as I said previously, like that representation that we're seeing
it really, it really helps because you feel like you
(18:16):
can see yourself represented. You know, that there's others that
are stepping forward and sharing their story, and you just
feel part of a collective and a community. So yeah,
it it means that you don't feel as ashamed. And
I think that it's really important to note that shame
doesn't just go away. And I still have days. Goodness.
(18:37):
Like I definitely have days where I just think like, God,
this is really hard. It's annoying, it's frustrating, it's painful.
And sometimes I just wish it would go away. But
most of the time I'm pretty comfortable with it. And
I think in many ways it's added to my life.
And you know, I wouldn't be speaking to you right now,
would I, if I didn't have a disability. So I
(18:58):
think it's yeah, it's looking at the ways that it's added.
And I think, you know, when I talk about the
ways that we can change the world, I think it's
all well and good to have accessible stages or accessible areas.
But how do you feel when you're at, at a place,
how are you treated? I think that sometimes the biggest
impacts that you can make, and I certainly know the
(19:20):
difference when I'm treated well or you just get a
sense of that, don't you? With, with people of, of
what they're thinking and feeling about your disability. And so
I think just to have a great day where you
can get everyone gets to experience music with or without
disability and have fun.
S1 (19:37):
Well, we all love music, but is there anything else
you'd like for us to know or about? Eliza Hull
and Disability pride and Disability advocacy?
S3 (19:46):
I was just going to say that, um, I have
a two new books coming out, two new children's books, one, uh,
book is coming out this next year. And that's about
the social model of disability for kids. So it's about
showing kids that the world can change, not the person.
And it tells a story of a child with, with
and without disability interacting together. And then the one that
(20:09):
I'm really excited about is a co-write with NAS Campanella,
who is an incredible. Yeah, she's a blind journalist with
the ABC, and we're writing a book about a child
that's blind, who experiences summer and experiences the beach, and
the ways that this child experiences the beach using all
(20:29):
the different senses. And yeah, I guess just to squash
those stereotypes around, uh, you know, people might think that
you don't experience the beach if you're blind, but this
shows that this child experiences it in the most beautiful
of ways.
S1 (20:44):
Just quickly, because you mentioned the terminology there, the social
model of disability, can you just briefly touch on that?
What does that mean for the uninitiated?
S3 (20:54):
Yeah. So the social model of disability, I guess, is
the opposite of the medical model of disability. The medical
model sees that the disabled person or person with disability
needs to be fixed, needs to change, whereas the social
model sees that the world needs to change, and that
there are so many barriers in the world, like physical
barriers or the way that we are treated or, you know,
(21:15):
not having an Auslan interpreter if you're deaf or not
having image descriptions, if you're blind. All of those things
are what the world can do to change. And it's
not up to the person that needs to change. It's
up to the world. Yeah. And so yeah, explaining that
for kids to show how we can change the world and,
and how it's not up to the person with disability
(21:38):
to be fixed.
S1 (21:39):
So it's like that saying that it's not my disability
that disables me. It's society that limits me.
S3 (21:46):
Yeah. And I really feel that because I can feel really,
like very disabled in a different environment that's inaccessible versus
an environment that's accessible like that feels very strong to me.
So I really follow the social model of disability and
feel it relates to me.
S1 (22:04):
So we'll finish up the conversation now. But I wanted
to talk about your beautiful song, Running Underwater. I just
think that it's so lovely, and I highly recommend anyone
that hasn't heard this song to go out and listen
to it, and also watch the YouTube video clip. The
official YouTube clip for Eliza Hull running underwater because it
is magnificent. That dancer you have in that film clip
(22:28):
is just beautiful and stunning. The whole visuals and the
sound we've talked about that you, due to your disability,
have trouble walking and nobody can run underwater. So I
just love that imagery and I love that story. Can
you tell us a little bit about how that song
came about?
S3 (22:47):
Oh thank you. Yeah, I'm glad that you love it. Um,
I guess, yeah it is. It's running underwater with that
theme around feeling like, you know, that kind of like
when you feel like it's real life is really hard.
So it was an analogy of pushing up against society's
barriers and misconceptions about disability and wanting to kind of
(23:07):
take the weight off myself, about feeling empowered, about having
a disability and a bit of a disability anthem. And
it's the first song I've ever written about having a disability.
And it features, as you said, the great dancer Roya
the Destroyer. Her name is and she has one leg.
And in the film clip she does incredible flips and
hangs off walls and, um, I guess she really embodied
(23:30):
the lyrics and showed that, you know, as people with disability.
We are capable of so much and often it's just
society that creates the barriers. And so I'm really proud
of the song, and it's been so good that it's
connected with so many people.
S1 (23:46):
That's really fantastic, and it's been a great honour to
meet with you, Eliza, and to talk with you today.
And I'm really pleased and thankful that you could join
us here on Vision Australia Radio here in Perth. And
I hope to speak to you again sometime.
S3 (24:02):
Thank you so much for having me, Simon. It was great.
S2 (24:07):
That concludes in Plain Sight for this week. Join us
at the same time next week on Vision Australia Radio,
VA radio, digital and online at VA Radio.com. You can
also listen on demand by searching for In Plain Sight
by Vision Australia Radio. Wherever you get your podcasts, or
ask your smart device to play in Plain Sight by
(24:29):
Vision Australia Radio. Thanks for listening.
S1 (24:32):
Thank you.
Hello, I'm Simon Chong and welcome to In Plain Sight,
a program where we highlight people who are making a
difference and impact within the disability sector and their community.
We shine a light on those who otherwise would be
hidden in plain sight. And it's a pleasure to bring
you these programmes on a weekly basis here on Vision
Australia Radio. Thanks for joining us this week. Slightly different
(00:30):
because my friend and colleague and co-host producer Abby is
away for a while. So I've got a new producer
sitting in with me for now, and his name is
Andrew Williams. I'd like to welcome Andrew to the program now. Hello, Andrew.
S2 (00:43):
Hi, Simon. How are you going?
S1 (00:45):
I'm going. Well, Andrew, can you tell the listener who
we've got coming up on today's show.
S2 (00:50):
Today we'll be hearing from Eliza Hull, who's a musician
and author and disability advocate.
S1 (00:56):
And it would be great to share that story with
you coming up very shortly. Eliza is a fascinating woman
with so many interests that are all impacting the lives
of many, many people, and also a great demonstration of
the different ways people can be advocates and be strong
leaders within their community. It also demonstrates within Eliza's interview
(01:19):
that sometimes people living with a disability have to be
an advocate just by doing everyday activities and be an
ordinary day to day person, because they're always having to
change something in their world to make it easier and
better and more accessible for themselves and others. And this
(01:40):
is why I really appreciate Eliza's story, and it's pleasure
to bring it to you now. Today I'm really excited
to welcome our guest, Eliza Hull. Eliza is a disability advocate,
musician and author, and many other things. And I'd like
to welcome Eliza to the show today. Thank you. Eliza.
S3 (02:01):
Thank you so much for having me.
S1 (02:03):
Now, Eliza, you're one of those really annoying people that
does so many things, and you do them all so
very well. How is that possible?
S3 (02:14):
Yeah. Uh, I don't know. Sometimes I do wonder myself. Um,
I guess I, you know, I, I'm a hard worker
and I'm really passionate about certain things, like writing and
creating music. Yeah. I feel like, you know, when you
have a purpose, you work really hard to reach your goals.
And so, yeah, feel passionate about what I do, and
(02:36):
that's why I seem to fit it all in. But,
you know, there are times when I feel really tired
because I'm juggling a lot, but I love what I do.
S1 (02:44):
That's excellent. I would like to start with the music.
I've been listening to your EP. Um, remind me again
the title of your last EP that was released.
S3 (02:52):
Here They Come.
S1 (02:53):
It's called. Yeah. That's right. I was really intrigued listening
to the song Island when I was just casually listening
to the song. I thought it was a love song.
And then over a few listens, I really liked the
line I am an island and you are the tide
and you consume me. Can you tell me a little
bit about your song?
S3 (03:13):
Yeah, I wrote that song with a great songwriter called
She Goes under the name of Gordi, which is spelled
g o r d I. And she was someone that
I really loved listening to, so it was pretty great
to be in the writing room with her. The song
is about similar experiences that we both had. She had
an experience where she felt both invisible and visible all
(03:36):
at once, which I know sounds kind of odd, but, um,
you know, sometimes when you have she doesn't have a disability.
But it was about her own experience. For me, it
was very much related to having a disability and how
sometimes when you're in a space and you have a disability,
you can feel almost ignored and pushed to the side.
(03:57):
But then at the same time, you can feel really visible,
like everyone's looking at you or, um, that kind of
feeling of like being on show. And so I guess
that was what the song is about. And there was
a particular experience where I was about to win an award,
a music award, and I realized that I couldn't get
(04:19):
up onto the stage because my disability is Charcot-Marie-Tooth, and
it means that I walk differently. And I really struggled
getting upstairs. Like, it's very impossible for me to get
upstairs unless, you know, there's really great railing on both
sides on my left and right and I can pull
myself up. But on this particular stage, there was just
(04:40):
stairs up onto the stage and no railing. I was like,
oh gosh, how am I going to accept this award?
And so I kind of felt like the analogy of
feeling like I was an island and like that kind
of emotion washing over me was just feeling like I'd
been really forgotten about. And, um, like quite kind of
(05:01):
feeling quite emotional that here I was at a really
beautiful part of my career and being acknowledged for my
work in music, but not being able to get up
onto the stage. Yeah. So it was. Yeah, that, that
that's what that song's about.
S1 (05:16):
The next song that I wanted to ask you about,
which is the title song, Here They Come. It was
such a provocative song, and there's a lot of running
in to and fro in that. I'm going, what's going on?
Who's she running from? Who's she running to? What? Can
you tell me a little bit about that song, please?
S3 (05:32):
I guess that song is about, um. You know, I
feel like over the years we grow and learn more
about ourselves. And I think Here They Come was kind
of like me saying, well, actually, like, there's nothing to
fear about being somebody that's, you know, classed as different.
And it's about that kind of feeling of unravelling and,
(05:54):
and coming out of my shell and then, you know,
using that. Here they come. They're running Down the hill
was actually kind of an idea of all of us
that have potentially been marginalized, pushed to the side, people
with disability. I kind of pictured us all fighting for
our rights and coming forward and being okay with who
(06:15):
we are. And I kind of just saw it as
a really powerful analogy of, yeah, coming, coming down that hill,
running down that hill and feeling like, you know, here
we are, here we come, and we're not going to
hide anymore.
S1 (06:28):
That's excellent. Thank you very much for that. You briefly
mentioned the name of your disability a minute ago. Can
you tell us a little bit about that and how
that looks for you?
S3 (06:38):
Yeah. So I have a condition called Charcot-Marie-Tooth, and I've
had that since I was five years old. It affects
me the way that I walk. Um, I fall over
a bit. I find it hard to get upstairs. I'm
often freezing cold, even on a hot summer's day, because
I can't regulate my temperature very well. It affects me
all different ways.
S1 (06:59):
And so you don't feel you don't need to use
a wheelchair?
S3 (07:02):
No, not at the moment. I have you know, there's
been times where I've used it on and off. Like,
for instance, last year I used it for a little
while because I with my disability, I'm also prone to
break more. And I did break a bone last year
and used a wheelchair during that time. And I guess
also when I've had surgery operations on my legs and feet,
I've also used a wheelchair, but at this point in
(07:23):
time I don't use one and I don't worry about
using one in the future. I kind of, I think
because we are in such a great space, I know
my family certainly, certainly were worried about me being a
wheelchair user, whereas now I think because we are seeing
that great positive representation of just, you know, wonderful people
that are really proud of using a wheelchair, that just
(07:45):
makes you feel less alone in using one and feeling
okay about it. And I think my disability is what's
classed as degenerative. So it it gets worse over time. Um,
so yeah, there's definitely a possible chance that at one
point I will be a wheelchair user. And I think
because of all the great disability advocates that have paved
the way, I'm not afraid of that.
S1 (08:06):
So that leads me to my next question. Living with
a disability can be difficult in itself, and we're often
having to explain ourselves and having to fight for this
and fight for that. Then to take that extra step,
to actually decide not only to fight for yourself, but
to fight and to advocate for others as well. How
(08:27):
did you move into that space?
S3 (08:29):
It really came about through an ABC scholarship that was
being offered with, if you're regionally based and you had
an idea to create an ABC series, and I had
an idea that was about parenting with disability because I, uh,
at the time had just had a child. And I
couldn't believe, like when I looked online, to just hear
(08:50):
some other stories from parents that were disabled, there wasn't
anything out there, and in fact it was pretty grim.
It was like a lot of stories that were saying that,
you know, to have to be a child that had
a parent with a disability would be a real burden
on you. And I was like, what? This is this
can't be right. So I applied for the ABC scholarship
(09:10):
and was the recipient of the first one. My idea
was called We've Got This, and it was about parenting
with disability. And I traveled around the country interviewing various
parents who identified as deaf, disabled, chronically ill, blind, um,
and just shared their stories about what it was like
to be a parent with disability. Um, and then I
(09:33):
turned it into a book. And so it became a
book here in Australia and then went on to become
an international book with parents from England and America and Canada.
And it's yeah, it's kind of surreal when I, when
I talk about it, I'm like, wow, I can't I
kind of can't believe it came true, that dream. But
it did. And I find it really powerful when people
(09:56):
reach out and say, oh, I've just discovered the book. And,
you know, I'm thinking about being a parent. And I
was really worried about being a parent. So this is
the book that I, that I need. That feels really
meaningful for me. And I think, you know, because I
did feel pretty alone and my I definitely, um, dealt
with medical stigma and medical professionals saying that they didn't
(10:18):
think I could be a parent or maybe shouldn't be.
So I knew what that was like to be made,
to feel like you shouldn't be a parent when you
when you have a disability. So I just hope that
it reaches the people that need it and and hopefully, yeah,
changes those misconceptions about being a parent with disability.
S1 (10:35):
I discovered on the Vision Australia library app that I
downloaded your books the other day, and I was really
intrigued and pleased to hear that you actually read your
for the audio book. The book. We've got this. And
it was so I mean, I listened to the forward
and I thought, that's, uh, that's a pretty heavy story
(10:58):
right there that forward. But your introduction, that was uh,
so moving and so warming at the same time.
S3 (11:07):
No thank you. Yeah. That means a lot. And yeah,
I was really proud to have read the audiobook like,
it was it was tough, I'm not gonna lie. Like,
I probably underestimated how long that was going to take
to read the whole book. Um, but I really enjoyed it.
And the only. Yeah, I guess bad thing is that
(11:27):
the international version doesn't have an audiobook attached to it,
because I just didn't see the need for it. And
I was like, what this is, it's just so, in
my opinion, really ridiculous because there's so many obviously so many, um,
you know, people that need audiobooks. I yeah, but that's
just something I can't control for the international version.
S1 (11:47):
Which leads me to a term that I've heard you
use a number of times in different places, and a
term that some of my activist friends use. Ableism. Can
you tell me and the audience your version of what
that term ableism and ableist means?
S3 (12:03):
So ableism is, I guess, discrimination against people with disability.
It's it can happen in all different ways. It can
happen in, you know, physical barriers that we may face. So,
for instance, if I arrive at a venue and I
can't get in because there's steps, I think that is
ableism or, you know, the attitudes that we face. So
(12:23):
any stigma or discrimination.
S1 (12:26):
So ableism, just a term that we put on discrimination against.
S3 (12:31):
Exactly. Yeah. Yeah.
S1 (12:33):
Now, as a disability advocate and a performer and an
author and all the other things that you do, do
you find it stressful to be a role model and
to be an advocate for people with disabilities in the
roles that you play?
S3 (12:48):
I have noticed at times I've felt quite burnt out
by it. You know, especially when you're repeating a story
quite a lot. It can feel like. Yeah, just tiring.
But then there's other times where I really still to
this day, absolutely enjoy it and feel so lucky to
share my story. And a lot of people don't get
to share their story. So I definitely feel privileged and
(13:12):
honoured with within that, and I get a real kick
out of it when people write to me and, uh,
you know, when children and parents will reach out, uh,
you know, through their parents and say that I wrote
a children's book called Come Over to My House.
S1 (13:27):
Tell us about that.
S3 (13:27):
It's about. Yeah, it's about various families. Uh, it invites
children into the lives of parents that are disabled, autistic, blind.
There's a blind mother, a deaf mother, a child that's
a wheelchair user. You know, I guess it just normalizes
disability and also just shows that these families have really,
(13:48):
you know, interesting, great lives and that disability is a
part of that. But it doesn't take away from who
they are as people in these homes. And a lot
of kids, through their parents will reach out and say
that they love the book or that it started conversations
they hadn't had before. But my favorite is when children,
you know, might go up to a teacher and say,
(14:08):
I can see myself in that book and I've, I
feel okay about my disability. And that to me is
like very meaningful and means that the book has done
its job because that's what it's all about. Like, I
feel like as a young child, it was really hard
to have a disability when there wasn't any books out
there that represented us. And I would have loved to
(14:30):
have had a book like come over to my house
in my home, so that then I just didn't feel
like I was so different. And that difference was was negative.
I think having that representation is so powerful. So I guess,
you know, to answer your question, sometimes it can be tiring,
but ultimately I feel really lucky to be able to
share my story and potentially help and change other people's
(14:53):
minds about disability.
S1 (14:54):
I also wanted to ask you, sort of following on
from the ableism question was, can you tell us what
you think about disability pride? And I've heard you mention,
I think you said in the introduction to your book
about being proud of being disabled, which to a lot
of people would sound quite jarring. How can you be
be proud of being a disabled person kind of thing? Yeah.
S3 (15:17):
Yeah, yeah. I mean, even my mum was like, I
don't really like when you say that I'm, I have
I'm proud to have a disability. I think that that
comes down to a maybe us just never hearing that.
Like it's almost like two contrasting ideas to have a
disability and be proud of it. But I think also
(15:37):
it's kind of for her. Sounded like I was, um,
you know, had pride, like there was some sort of
ego attached with that pride. And that's not what disability
pride is for me. It's nothing to do with my ego.
It's the opposite. It's kind of for me, it's about
being with others and feeling proud about being part of
(15:58):
a community. And I love, like some of my show's
greatest thing really, is the fact that I know there's
going to be so many people with disability in the
one room, and it just feels so good. Like we
just after the show, we hang, we hang out, and
it feels like really unifying to be part of a collective.
And that to me is what disability pride means. It
(16:20):
means being together and pushing up against that kind of
narrative that actually it's, you know, that there's nothing wrong
with being disabled. In fact, it can really add to
your life and to your sense of self.
S2 (16:36):
You're listening to In Plain Sight on Vision Australia Radio
with me, Andrew Williams and your host Simon Chong. Today
we're joined by musician, author and disability advocate Eliza Hull.
S3 (16:49):
I think when you're young and growing up like you're
already we all, we all were like struggling whether you
have a disability or not. You know, there's so many
changes that happen to your body and you want to,
you know, fit in. You want to be part of
the cool, cool group at school. You don't want to
be left out. And I think that that's very common
(17:11):
for everybody. But when you have a disability, it just
adds that extra layer in the mix of like, oh,
I don't want to stand out. I don't want people
to notice that I'm different. I don't want to be
called out for being different. And so in in any
way possible, I just hid it as much as I
could never kind of identified with that word disability, because
(17:31):
it was not really something that was spoken about in
that way. So for me, it was always, I have
a leg problem. Um, even though my disability affects my
whole body, I guess my legs are the most prominent
visible part of my disability. So that's how I would
identify as just saying I had a problem. I guess
now it's like so good not to hide it and
(17:53):
so good to just be myself and celebrate who I
am and just feels like a weight off my shoulders, actually,
like so. Yeah. And I think that just comes over time.
And when you grow and you get older, but also,
as I said previously, like that representation that we're seeing
it really, it really helps because you feel like you
(18:16):
can see yourself represented. You know, that there's others that
are stepping forward and sharing their story, and you just
feel part of a collective and a community. So yeah,
it it means that you don't feel as ashamed. And
I think that it's really important to note that shame
doesn't just go away. And I still have days. Goodness.
(18:37):
Like I definitely have days where I just think like, God,
this is really hard. It's annoying, it's frustrating, it's painful.
And sometimes I just wish it would go away. But
most of the time I'm pretty comfortable with it. And
I think in many ways it's added to my life.
And you know, I wouldn't be speaking to you right now,
would I, if I didn't have a disability. So I
(18:58):
think it's yeah, it's looking at the ways that it's added.
And I think, you know, when I talk about the
ways that we can change the world, I think it's
all well and good to have accessible stages or accessible areas.
But how do you feel when you're at, at a place,
how are you treated? I think that sometimes the biggest
impacts that you can make, and I certainly know the
(19:20):
difference when I'm treated well or you just get a
sense of that, don't you? With, with people of, of
what they're thinking and feeling about your disability. And so
I think just to have a great day where you
can get everyone gets to experience music with or without
disability and have fun.
S1 (19:37):
Well, we all love music, but is there anything else
you'd like for us to know or about? Eliza Hull
and Disability pride and Disability advocacy?
S3 (19:46):
I was just going to say that, um, I have
a two new books coming out, two new children's books, one, uh,
book is coming out this next year. And that's about
the social model of disability for kids. So it's about
showing kids that the world can change, not the person.
And it tells a story of a child with, with
and without disability interacting together. And then the one that
(20:09):
I'm really excited about is a co-write with NAS Campanella,
who is an incredible. Yeah, she's a blind journalist with
the ABC, and we're writing a book about a child
that's blind, who experiences summer and experiences the beach, and
the ways that this child experiences the beach using all
(20:29):
the different senses. And yeah, I guess just to squash
those stereotypes around, uh, you know, people might think that
you don't experience the beach if you're blind, but this
shows that this child experiences it in the most beautiful
of ways.
S1 (20:44):
Just quickly, because you mentioned the terminology there, the social
model of disability, can you just briefly touch on that?
What does that mean for the uninitiated?
S3 (20:54):
Yeah. So the social model of disability, I guess, is
the opposite of the medical model of disability. The medical
model sees that the disabled person or person with disability
needs to be fixed, needs to change, whereas the social
model sees that the world needs to change, and that
there are so many barriers in the world, like physical
barriers or the way that we are treated or, you know,
(21:15):
not having an Auslan interpreter if you're deaf or not
having image descriptions, if you're blind. All of those things
are what the world can do to change. And it's
not up to the person that needs to change. It's
up to the world. Yeah. And so yeah, explaining that
for kids to show how we can change the world and,
and how it's not up to the person with disability
(21:38):
to be fixed.
S1 (21:39):
So it's like that saying that it's not my disability
that disables me. It's society that limits me.
S3 (21:46):
Yeah. And I really feel that because I can feel really,
like very disabled in a different environment that's inaccessible versus
an environment that's accessible like that feels very strong to me.
So I really follow the social model of disability and
feel it relates to me.
S1 (22:04):
So we'll finish up the conversation now. But I wanted
to talk about your beautiful song, Running Underwater. I just
think that it's so lovely, and I highly recommend anyone
that hasn't heard this song to go out and listen
to it, and also watch the YouTube video clip. The
official YouTube clip for Eliza Hull running underwater because it
is magnificent. That dancer you have in that film clip
(22:28):
is just beautiful and stunning. The whole visuals and the
sound we've talked about that you, due to your disability,
have trouble walking and nobody can run underwater. So I
just love that imagery and I love that story. Can
you tell us a little bit about how that song
came about?
S3 (22:47):
Oh thank you. Yeah, I'm glad that you love it. Um,
I guess, yeah it is. It's running underwater with that
theme around feeling like, you know, that kind of like
when you feel like it's real life is really hard.
So it was an analogy of pushing up against society's
barriers and misconceptions about disability and wanting to kind of
(23:07):
take the weight off myself, about feeling empowered, about having
a disability and a bit of a disability anthem. And
it's the first song I've ever written about having a disability.
And it features, as you said, the great dancer Roya
the Destroyer. Her name is and she has one leg.
And in the film clip she does incredible flips and
hangs off walls and, um, I guess she really embodied
(23:30):
the lyrics and showed that, you know, as people with disability.
We are capable of so much and often it's just
society that creates the barriers. And so I'm really proud
of the song, and it's been so good that it's
connected with so many people.
S1 (23:46):
That's really fantastic, and it's been a great honour to
meet with you, Eliza, and to talk with you today.
And I'm really pleased and thankful that you could join
us here on Vision Australia Radio here in Perth. And
I hope to speak to you again sometime.
S3 (24:02):
Thank you so much for having me, Simon. It was great.
S2 (24:07):
That concludes in Plain Sight for this week. Join us
at the same time next week on Vision Australia Radio,
VA radio, digital and online at VA Radio.com. You can
also listen on demand by searching for In Plain Sight
by Vision Australia Radio. Wherever you get your podcasts, or
ask your smart device to play in Plain Sight by
(24:29):
Vision Australia Radio. Thanks for listening.
S1 (24:32):
Thank you.
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