It has become such a powerful way for me to release that feeling of not fitting in in
Like I said, music is a powerful release and an expression.
It has a magic in it for me and I think holding things in, it can make you sick.
My big question for you is how do you live in a world that wasn't made to accommodate
And I have the most glorious guest to help me answer that question, Ellie Mae Barnes.
Ellie Mae was diagnosed with cerebral palsy when she was a toddler.
You might also know her as part of the rock and roll Barnes family.
She's been performing with her dad Jimmy Barnes since she was a young girl, but now she wants
to stand in her own spotlight.
Ellie Mae has just released her debut album, No Good, it's out now.
It is a beautiful listen and Ellie Mae says she's made it with the people that she loves,
including Neil Finn, Diesel and Shane Nicholson.
Ellie Mae Barnes, what an absolute joy to have you, you beautiful leopard sparkly unicorn
into the podcasting studio, because to me, you are someone that exudes joy and almost
a dogged determination to be joyful, to grab life with both hands.
Where does that come from?
I think when you struggle to even live, like when you struggle to be born and you're lucky
to be alive, you just have to be grateful for every second you get to be here.
And that's how I've lived my life and I think I've just been happy to be here and I have
this beautiful family around me who I'm just grateful for every second and I have a beautiful
son and I'm just lucky.
And even the way you phrase that makes my heart feel full because you're going to help
us answer this big question that we have is how do you live in a world that wasn't made
to accommodate your body?
And you first spoke there about, you know, you fought to enter the world, didn't you?
Yeah, so I was born at 26 weeks and I was 750 grams and I had a brain hemorrhage when
I was born and 34 years ago, you know, 89, that's medically not a great place to be,
but you know, with the help of incredible doctors and nurses and my parents just fighting
for me and begging me, I think I just forced myself to be here and I was like, no, I'm
going to be alive, apparently I'm going to be early and apparently was going to be here
whether the world wanted it or not.
And then the world wasn't ready for how my body was going to be because I had cerebral
You know, I didn't start hitting those milestones you were meant to hit, I guess because I had
that brain hemorrhage and being so early.
You know, I made it through that, but I guess not fully unscathed and you know, you live
I was very lucky that that was the main consequence and not death or worse or you know, and I
then lived with this disability, which is cerebral palsy, a very common disability that
affects everyone differently.
It's caused differently in everyone and that then means it's not curable.
It's sort of, you can manage some of the symptoms, but it's not going to go away and then you
find out, well, the world's kind of made for one kind of person.
And if you don't fit that, you kind of have to work around it.
And so if you're not going to fit that mold and the world's not built for you, it can
be pretty isolating, but then you still have to be grateful and find that joy.
And I guess for me, I was always, you know, happy still, but I was aware that I was different.
But then I figured, you know, maybe other people still feel isolated or like the world's
not for them in a different way, because I think that pain isn't limited to physical
People have, you know, mental pain, obviously, and there's all different types of pain and
people can handle all different levels of pain.
And so I'm not the only one who goes through that.
And even my experience of disability is fairly privileged.
So you know, you're not the only one feeling isolated, even though this world isn't made
There's plenty of people who feel that even though it's not the same experience.
And then it's about finding a release for that feeling.
And that's what music is for me and art and creating.
And then about sharing what that feels like.
So maybe other people don't feel that way so much.
And I guess talking about it, because talking about it is the only way that that's ever
And you do talk about it.
And as you say, you use your music, you have this debut album that everyone can listen
It's called No Good.
I'm holding it in my hot little hands and you just rock on the cover of this.
It sounds very much like by finding your voice, by finding who it is you are, that is how
you've made room for yourself and more than room, you've been unapologetic about who you
And I think that's really hard for me because for a long time, it felt difficult for me
to accept the idea of taking up space or even just, I don't know, I just felt like I should
be quiet or in the background and just supportive.
Because you were a backup singer for a long time, dare I say, with your dad, weren't you?
But now you are front and centre.
Yeah, it's kind of strange because I did backing vocals with dad on and off throughout my childhood.
I started then doing it almost full time from when I was like 12 or 13.
And so to stop now, it's sort of strange sometimes if I'm not doing the shows because I'm not
unwell, so I'm just not there, I'm doing my thing.
So it does feel kind of weird because I love singing with my family and I love watching
Nothing, like he's such an incredible performer and to be able to sing with him has been
like one of the greatest honours of my life and how I've learnt to feel more confident
as well as a performer and to be able to sing with someone of his calibre is incredible.
And you have a very special relationship, the two of you, don't you?
I saw in a story about you both that you're very good at almost wrapping your dad around
I don't mean to, I guess, even.
I love him with my whole heart and always will, like, if anything happened to my dad
or I'd never be okay, I don't think.
He's just, he's my dadda.
Your beautiful dadda.
And of course, for all of us, your dadda is Jimmy Barnes, who is the soundtrack to so
many of our lives.
But of course, your beautiful mum, and I've been lucky enough to meet your mum just a
handful of times, but she is so wise and she's given me and my husband, Petey, actually,
some amazing advice over the years and she's pretty phenomenal.
My mother is beyond wise, she's like one of the smartest and kindest, most generous people.
My mum can speak seven languages, I think, and her brain, like, I feel, knows no limits.
Like, honestly, my mum's the glue that has held everybody together and I feel she's kept
me alive as well.
While dad and I have a very unique bond and I feel we're extremely similar, which probably
drives mum nuts, she's just, imagine two of us, like, mum has kept us together and keeps
us from, you know, pushing everything too far and keeps everybody grounded and, you
And would you say as well, with our big question, that your parents have very much helped you
to live in the world that wasn't made to accommodate your body?
Because also, my family, they never made me feel that way.
They never made me feel like I was different, even though I had to do all these different
things and I had to go to these appointments and I was different.
You know, I got a running trophy in year two and went out to celebrate with my dad at Catalina
and I definitely did not win that race.
Your dad got you that trophy, didn't he?
It was presented to me and 100% my dad bought that trophy.
It was not the same as the other trophies.
It did not even have a plaque on it.
My dad went and bought that trophy and it was given to me.
Thank you, Miss Giddy, for keeping his secret.
But we all need those moments in our lives, don't we, where the people around us believe
in us and love us and lift us up and see those things that perhaps at moments in our lives
And I think as well, Ellie May, what I adore about you so much is that you are so yourself
in the sense of you are determined not to be quiet, not to be invisible, even down to
the sensational outfits that you wear and the way that you perform on stage.
And I think that is so inspiring for people to see.
I mean, I just don't know how to be anybody but myself.
And I also feel like it's unfair that people think disability looks a certain way and
it has to be, you know, walking sticks have to be metal and things have to be beige.
And yours is kind of sparkly, isn't it, your walking stick?
And it's, you know, it lights up and I have other ones that light up as well.
But, you know, I just think there's this one idea of what disability looks like and often
there are people who don't even think I have a disability because I'm younger or dressed
When I haven't had to use a walking stick and I just walk the way that I walk, it'll
be that I'm drunk, which nobody would need.
I'm carrying around a juice box, as you see.
And how do you, though, respond to that?
Because I have heard you say in interviews that when people, some people have seen you
walk, they make this assumption that you have had too much to drink.
I mean, I deal with most things with humour.
I'll either go with it for a second or awkwardly just bring up the topic of cerebral palsy.
And often somebody who's making that kind of accusation doesn't even understand what
And it's very kind of confusing for them.
And then they get a bit...
A bit defensive, perhaps?
Yeah, I've had very defensive, say, security guards or people who are like, well, you don't
Well, OK, you would know my medical condition, so congratulations.
And you move on, because at the end of the day, it doesn't change my life, but it will
upset other people doing that.
And I used to just move on, but now it's important that I tell that story, because maybe some
stranger will think before they say that to somebody else on the street, or somebody at
a bar might not assume that before they say that to somebody else.
They might think to ask the question or whatever, or maybe let somebody explain before they
get defensive or angry, because there are all sorts of conditions that cause different
things or slurring.
My speech can slur sometimes if I'm tired, because the signals from the brain go differently.
So, you know, it's different for people.
Maybe by talking about it, people might think a bit before they speak to strangers.
I think that is so important, what you are doing, the way you do speak about it, share
it and also use your music to, you know, shout it out in the sense of, this is who I am,
and no, I'm not going to fit in a particular box.
There were so many beautiful songs on your debut album, but there's a couple that I've
just loved, Crashes to Ashes, I think that's a cracker, No Jack of Hearts, and of course
They were three that I've been playing on repeat in the car.
Tell us a little bit more about what it was like recording for your debut album.
Oh, it was just everything I think making your debut album should be just because of
the people that I surrounded myself with, which happened to be not only like my favourite
people musically, but personally.
Like not all of them, I couldn't fit everyone I love on the album, but a lot of people,
you know, that I really love got to be involved and it was so supportive and so beautiful
and all of them were determined to help me create the album that I had in my brain and
they knew me well enough to do that and it was just incredible.
It surpassed my expectations and they made me so comfortable that I just had fun and
was able to express myself in a way that I didn't think I could before.
And your version of Creep, it gave me goosebumps because there's obviously so much of your
experience and emotion packed behind that song.
Well, yeah, and it's so strange because I didn't write that song.
It's obviously a really famous song and not at all written about my experience of disability,
but it's become for me so personal.
It has become such a powerful way for me to release that feeling of not fitting in in
the world that we were discussing earlier.
Like I said, music is a powerful release and an expression.
It has a magic in it for me and I think holding things in, it can make you sick.
I think keeping it all in, that's when you feel alone.
That's when you feel isolated.
That's when you'll get sad.
Creep just lets it out in a big way for me and at first I would do it in a really self-deprecating
way and I would joke and I'd apologize to my mum when I'd swear and I'd do it live
at the cabaret and make it really silly, but by the end of the song I'd basically be in
tears because I do really connect with it emotionally and the lyrics take me to a very
different place and let a lot of the darkness out of me that is deep, deep in there because
when you're in constant pain, it's still there.
It's hard for me to wrap my head around that pain that you deal with all the time and that
there are moments when I've heard you say that you grip the mic stand to stand up.
After you've performed live shows, I've heard your doctor explain that it can take you a
long time to recover from that.
I mean, you must have the most phenomenally strength sort of mind to endure that.
Where does that come from, Ellie Mae?
No, I think it maybe comes from that place of having felt like, okay, I'm so safe in
my disability, but my disability is so normal.
This pain that I'm in is my normal and like I said, everybody has their own other pain,
so I guess it's relative and I've just learnt to deal with this pain that's there because
I've realised that wallowing in it isn't going to make it go away, so I have to just be mentally
strong because what alternative do I have?
I can have my release, I can be upset about it sometimes and then I move forward because
if I dwell on it and I sit in it and I focus on it, it's going to feel worse and yes, it's
a high amount of pain and sometimes it affects me physically and I do have to force myself
to slow down because sometimes I'm too strong about it and that's what I still have to maybe
learn is maybe the limit, but until I work that bit out, I'm sort of okay with just where
I'm at and the fact that it's there because I think everyone has pain and I'm just better
at dealing with mine at the moment until I can't, but I'm still grateful for the life
I have because I think that sometimes other people's pain is worse or they feel worse
about it and that sucks.
I feel like at least I have a lot of support.
And what I think again is so special about you, like I just look at you and I just want
to give you such a big hug.
You talk about the magic of music, but I think you are magic and you have this beautiful
way about you that sort of almost sprinkles a fairy dust on people with your music, with
your essentially I'm not going anywhere quietly and I think that is what is so fabulous too
That's really nice.
Do you feel that?
I'm sort of like a bit of an introverted extrovert because I feel like I would be quiet except
that I think it's important for other people and if it wasn't important for other people,
then I'd probably just be quiet about it because it doesn't bother me so much.
I'm just happy in my little bubble, but I don't like injustice and I don't like seeing
other people feel sad or suffer and so I think it's important to be seen because other people
want to see themselves sometimes and I remember thinking when I was younger that I'd like
to do an album maybe, but I don't think I'll do that because I don't really see disabled
people who make albums and then I thought, well, I should just do one in case there are
really great disabled artists that I don't get to hear because they don't think they
So that's kind of why I won't go anywhere quietly and more because not because I'm really
comfortable doing it, I'm kind of not, but more because I think it's important.
Because you have to do it and I think as well that helps answer that big question that we
have about how you live in the world that wasn't made to accommodate your body that
it's this sense of, no, this isn't comfortable for me to do, but I have to do it because
I want to be giving a voice to so many other people.
Yeah, and it's not like I think I'm the best voice, but I think if you are given a platform,
it's a responsibility that you have to at least be visible so that people have something.
And also there was an interview that I heard you do where, was it a doctor or a therapist
that basically said when people are older, sort of adults with cerebral palsy, you go
Yeah, you stay at home and just be like, why are you trying to treat this and sort of like
be more active, you just be at home and sort of disappear.
I don't really understand why you're trying to do so much.
And I was like, well, I don't think that's really good for the specialist to be saying
to people, why would you say that to people, I'm not going to disappear.
Like, and I think that's when I got a bit more defiant because I don't want him telling
people who've just got out of the children's hospital, they should be disappearing.
Like, I don't want the people that I'd met in the waiting room, those beautiful little
kids to be hearing that, that they need to go to their home and disappear and go hide
So I just put on my sparkliest outfits and like went out more than I was comfortable with.
And you know, did the opposite of what that man said and went to a different specialist
and refused to disappear because of that and because of other people who were hidden away
and treated poorly and people who feel they don't have a voice or shouldn't have a voice
for whatever reason.
I know people who spent their youth feeling they had to be the quiet, well-behaved disabled
person or well-behaved disabled girl to not be any more inconvenienced than we already
are to our families or to society or to the world.
But it's not us that's the inconvenience, it's the world that's not convenient for
us who are already inconvenienced by our own bodies.
So it's society that needs to maybe think about some changes there.
And you're helping that by being this amazing, sparkly rock and roll unicorn.
I'm like, I don't know how that's helpful, but I can only be myself.
I don't know if walking around in rhinestones is particularly helpful.
It is helpful because it means you can't avert your eyes.
I'm here and this is me.
Thank you so much for talking with me today.
And you've made my heart feel full when I've needed it.
So you and me both.
You're a darling.
So I feel like Ellie May's a bit of a kindred spirit.
We were both in our leopard and I was eyeing off her extraordinary sparkly boots.
Have a listen to her beautiful debut album, No Good.
We have all of the details in our show notes.
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