Embrace It with Lainie & Estela - Smashing Disability Stigmas

Embrace It: Episode 46 - Eliza Hull, The Things We Carry

• Season 2 • Episode 46

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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. 

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Hosted by Lainie Ishbia and Estela Lugo.

Embrace It is produced by Launchpad 516 Studios.

For sponsorships and media inquiries, drop an email to: embraceit@lp516.com

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Eliza Hull:

Welcome to the Embrace It series, where women with all types of disabilities can be real, resourceful and stylish. With each episode, you'll walk or roll away with everyday tips, life hacks and success stories from community leaders and influencers. So take off your leg braces and stay a while with Lainey and Estella.

Lainie:

Hi, I'm Lainey and.

Estela:

I have CMT. I'm a neuro-muscular disorder affecting approximately 2.6 million people worldwide.

Lainie:

That's as many as MS. We believe disabilities should never get in the way of looking or feeling good. Both of us wear leg braces and have learned through our own personal journeys to embrace it.

Estela:

Brought to you by Launchpad 516 Studios. Each episode is designed to challenge your own stigmas and beliefs around disability. We want our listeners to get the most value for their time spent with us, so we interview some of the most empowering disability badasses in the world. Through storytelling, personal experiences and tips, we're all reminded of our own strengths and endless potential.

Lainie:

For more information and exclusive resources, check out our websites at trend-ablecom and hnf-curorg, and don't forget to hit the subscribe button for future episodes and special promos.

Estela:

Welcome everyone to our spring episode of the Embraced Podcast. Hi Lainey, Hi Estella. We are here on the cusp of Mother's Day weekend and we might not get this out in time for Mother's Day, But nonetheless we definitely have a badass disability advocate mom as our guest today. Very special guest joining us from London. Her name is Eliza Hull. Welcome, Eliza, Hi, how are you? Thanks for having me. You're so excited to have come across your work and your story and we love especially connecting with the CMT community outside of the US, because I think many times we forget how big our community is and how globally diverse it is. And we came across you on Instagram and we saw some of the amazing work that you're doing and it seems like you're very multifaceted talents, cover many, many different areas. So I think, before we dive into that, we'd love to hear a little bit about your journey, your diagnosis and kind of a little bit of your backstory.

Eliza Hull:

Well, it's so lovely to be here. So I live in a place called Castle Main, which is a regional town about an hour and a half from Melbourne, australia. I'm currently in England right now, but yeah, i have always lived in Australia. When I was about I think it was about five years old I started falling over at school and my parents didn't know what was happening. So I was taken to many doctor's appointments and a lot of the conversations were about me and not with me or to me, so I was very confused as a child.

Eliza Hull:

After being diagnosed with lots of various conditions, i was finally diagnosed with chaco-mary tooth, and the way that it affects my life is I walk with a very different gait. I still fall over a lot. I can't get upstairs unless there's a handrail to lift me up. If there's no handrail, it's absolutely 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 I actually broke my leg, so that was an extra layer of having my disability but then also having a broken leg. It was quite hard for the last couple of months But, funnily enough, when I was five years old when I started to develop my disability, i also started to sing And that was really a fluke chance where I was asked to sing in a local competition with my school and won a gold medal in the competition.

Eliza Hull:

And I guess, when I was going through so much confusion about having a disability as a child, it was a way to not only express myself and all the things that I was feeling but also have positive reinforcement of that. I was able to do something that people would say was like a positive thing instead of it always being a negative. So I guess that was how I started singing and I've never looked back. But all through my teenage years, i think because of that lack of representation, i didn't really see anybody that walk differently and sang or look different in being disabled.

Eliza Hull:

And so in the music industry I decided that I was going to hide my disability as much as I could And really just would. Whenever I met any kind of prospective management or agent, i would sit down and hide my hands or hide the way that I walked, because I was afraid that I wouldn't get the opportunity because I was disabled. And it wasn't actually until I became pregnant that I decided it was time to be me decided it was time to be authentic. I think having kids was the real catalyst to go. Actually, i want a model authenticity for my children so that they can be whoever they are 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 a really solid partnership, but also just wanting to be a true, authentic self for my children, was the catalyst for me not only being myself, but realizing that there was so many barriers and things to change in the world when it came to disability.

Lainie:

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 it on. So what about you?

Eliza Hull:

Yeah, so I guess, because there's so many types of CMT, i've had the kind of panel blood test and never been diagnosed with a certain type. At this point I'm now at the stage where I could get the extra testing done. So I'm kind of yeah, at that point where now I could go and find out. My children aren't showing symptoms at this point. But in saying that, i've got a three year old and an eight year old and I started showing symptoms when I was five and with CMT, as we know, it can happen at any point in somebody's life. So I don't know, is my answer.

Estela:

So going on to your music career, motherhood obviously had an impact on how you wanted to present yourself to the world. How did you begin to have those conversations with management and just people within your network? How did that come about and what were the reactions?

Lainie:

I kind of just paused because Eliza isn't just like a singer, like doing karaoke, like Eliza is like a real singer, like a professional singer. Right, you do concerts. She's been featured lots of places. You're big in Australia and on the rise and so many other places. So I just want to set the tone that we're not just talking about. Well, like myself, you would not want to hear me sing. but who is attempting to just sing in a little karaoke club? This is like real singing. God for lively. This is what you do.

Eliza Hull:

Yeah, that's so nice of you to say Thank you. I guess I don't know whether you felt like this, but when I decided to be myself and identify as disabled and speak about it, i also felt like the world was ready for that, in that we've now moved into this space where disability and diversity is. We're not at an equal level, that's for sure. We're still living in an inaccessible world, we still face discrimination I'm still stared at when I'm in society and sometimes even stopped and prayed for But we are moving into a space where it's being more celebrated and more spoken about. And so I guess when I decided to identify as disabled, the music industry was already starting to shift and organisations are wanting to do better. The areas which is like the equivalent of the Grammys are wanting to change and have more disability representation and have a ramp up onto the stage. But that's taken a lot of advocacy.

Eliza Hull:

So I guess I felt like the time that I was really ready, it almost felt like a complete shift that society was also ready at the same time. I think that was complete fluke and chance. I think it was probably a bit of both, in that it was a chance that I was feeling that. But I also think that I was able to identify at the time that I felt more invited and accepted to do so. So I think there's so much that needs to change and that there's still lack of representation in festivals and on radio, but at the same time it's something that people are really caring about, at least at least 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:

So you know, for our listeners, who some have CMT, some have other types of disabilities, you know, you are on a stage right, like, first of all there's the pre-part, which is getting up on the stage, then there's balancing during your performances and being able to do that in a way that's still entertaining and not, i would imagine, drawing attention to your disability, but obviously, as a singer, you want people to pay attention to your voice 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 maybe more accepting, but you still have to assert yourself each time, i would imagine, and say what you need to people.

Lainie:

And then, how do you balance during a show?

Eliza Hull:

Yeah, i hold onto things. So I like that's. I've realized that you just that's how I navigate my life. Like when I'm looking at somewhere I have to get up onto or into, i'm always thinking what can I hold on to to get into there, onto that? So the stage is exactly the same. So I'm holding onto my mic stand, i'm holding onto my keyboard stand to balance, trying not to fall over.

Eliza Hull:

I've just done the first ever show recently where I decided to wear because I was wearing like a really beautiful dress. I ended up actually wearing no shoes underneath that dress. It was not, it wasn't visible to the audience. I didn't care if it was or wasn't, but it wasn't. But it actually helped me because I wasn't in shoes and didn't and was able to kind of hold myself up right And it actually really helped because singing is quite physical And I hadn't really realized that until recently, that not only is it hard to get into a venue, to feel isolated because I can't go and hang out with my bandmates, because I can't get up the stairs to go and hang out with them, to not be able to get up on the stage, to have to get them to lift me or to crawl up the steps to get onto that stage.

Eliza Hull:

But then not only that is when you're on the stage. How do you stand and sing? How do you use that whole body to really sing? So I think it's hard. I'm not going to lie, it's hard and it's exhausting And, yeah, there are moments where I wonder if that is the right path for me because it is so exhausting. But ultimately, it's the way I express myself. It's something that I've learnt to be good at, and I think that I know how important representation is. So I always think about emerging disabled artists. To see somebody like them, or to see somebody that even isn't like them but has a disability doing it. That's so powerful.

Estela:

Well, it's definitely very easy to see that it is your passion and it is your art, and we're going to do something that we haven't done before. We're going to play your latest song, but before that I'd love to get a little bit of a background on the song itself. I believe it's called Running Under Water And I played it today and I was just like I was telling Lena I'm like this is really good, like this is something I would listen to on a regular basis. I found the melody to be beautiful. I found the lyrics to be beautiful. It's like riding my wheelhouse. I would love to hear where this song came from and what the lyrics, what you're really trying to express in the lyrics and the message that you want to portray to people.

Eliza Hull:

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 with what you want me to be, because I think that you and not even people that maybe don't have a disability, that have been told that they have to change to fit in And that's really what the song is about And being told that you have to. For me it was to. As a child, i had to walk into a straight line so that the doctors could watch me walk and study the way that I walked And I felt their gaze. I felt there that intense feeling of that I needed to change, that I needed to fix myself. That to be me was something that ought to change and needed to be fixed ultimately And the analogy of running underwater is really about that feeling of like pushing up against society's view of being different and being disabled And that ultimately it's hard and there's so many barriers, but if you are true to yourself, that you can actually push through that and be okay in the end- And I love that analogy Because me myself I could see the two sides of that analogy running underwater, that resistance, but at the same time the freedom because physically underwater that's the only way I know what you're going to say.

Lainie:

That's like when you can run. When I can run, Yeah. And the time I would be able to run is with the gravity and the help of water, you know, and it's the word.

Eliza Hull:

Yeah, Yeah, that's so true actually. Yeah, you're right. Yeah, it's beautiful.

Estela:

So we're gonna we're gonna play your song and we're gonna let everybody kind of hear for themselves and we're gonna share afterwards where they can download the song and listen to some of your other songs as well. Here's Eliza Ho with Running Under Water.

Eliza Hull:

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 With what you want me to be. Whoa, this cookie cutter version Is not doing me any favors. I don't wanna bring fuel to the fire. I gotta get louder. I gotta, gotta, gotta. Take the weight Off me. Show my bones for you to see, cause I'm not getting far. I'm running on the water, cause I'm not getting far. I'm running from you. Oh, oh, oh, oh, oh oh.

Eliza Hull:

I remember when I was five, they told me to walk in a straight line. Growing up, i was always trying to 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. I gotta, gotta, gotta. Take the weight Off me. Show my bones for you to see, cause I'm not getting far. I'm running on the water, cause I'm not getting far. I'm running from you. Oh, oh, oh, oh, oh, oh, i'm running. Oh, oh, oh, oh, oh, oh, cause I'm not getting far. I'm running on the water, cause I'm not getting far. I'm running from you. Take the weight off me. Show my bones for you to see.

Lainie:

Oh, gorgeous.

Estela:

I felt myself like joking up over it. It chills.

Lainie:

Right, but like What? is it like to listen to your own song?

Eliza Hull:

Yeah, odd, odd, especially because it's such a I mean, this song is only out yesterday Or today, really. Yeah, so, odd, odd, odd to hear it back. As an artist, you kind of go through waves of Going oh, is it any good? But to be honest, listening to it then I just felt like feeling 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:

When I hear the words take the weight off me. I love that. I think that's you know. One of our missions with this podcast is to help you. Help you take off yourselves The weight that we don't even realize we carry with us every day. What does that mean to you?

Eliza Hull:

Yeah, exactly that, because I think there are things that are hard about being disabled. There are things that are hard that are caused by the wider society, but there's also just things that are just hard right, like pain. Pain is annoying, pain sucks, pain is really hard, and pain, yeah, it can make me feel like I can't do things, and that's really hard, like even going for it, you know, just to hang out with my family Or be able to do things that I really want to do, and it stops that from happening and that can feel really hard at times. And then also wider society barriers. Like you know, we live in a really inaccessible world. We live in a world that's not built for us, and we also face, you know, attitudes that you know discrimination, or people that stare or people that ask, you know, certain questions That really hurt or say things that really hurt. So I guess for me it's like, you know, take, that is the weight, that is the thing that I carry around And I want that to be taken from myself and for others.

Estela:

And I think it's so powerful the way you speak about disability. And also you're not only a songwriter but you're an author, and you've written two books so far. One of them is geared more towards adults and shining a light on disabled adults And the parenting world, and then one is geared more towards children. Where did those books come from? Assuming they were inspired by your own experience of motherhood with a disability?

Eliza Hull:

Yeah. So when I met my partner my husband to be, i was really excited to start a family And I'd always wanted to have kids And luckily I'd grown up in a family where it had been accepted, and kind of almost like expected really, that I would have children. Mum and dad were like, yeah, we want to grant children. So I just thought that was just going to be a possibility for someone like me. I knew that it would be challenging And I also I had worried about passing on my disability, not because I didn't like I wasn't accepting of myself at that time. It was more that I knew that the world was hard. So it was like, if it's hard for me, what would that be like for them? But ultimately I knew that I was the most experienced person to make that decision, because I'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 can actually be there for them, i can help them through navigating an inaccessible world And I have that experience. But when I went to my neurologist and said that's what I wanted to do, i wanted to start a family, and he second guessed me and said that he didn't think that I could do it And he was worried that I would because I fall over a lot, that I would fall over and hurt my baby Being pregnant, that I would fall over and that I wouldn't be able to manage. And then said is there any other way that you could potentially not have a child But still have children in your life? And at that moment I just felt very vulnerable and a lot of shame actually, and I believed him really ultimately for a little while, and I was lucky that I had a really supportive partner that was like, actually, you know, that's not true Like we can do this and we will make adjustments, but we can do it.

Eliza Hull:

So at that time I just did a bit of a Google search where I was like disabled parenting stories, like I wanted to hear other stories of what it was like to be a disabled parent, and at that time I was shocked by the lack of representation of disabled parents But also the narrative that was being portrayed, which was often that it was a burden to have a 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 a podcast with. It's called ABC, but you have ABC as well in America, don't you? So it was like that. So it was a podcast with them. They were offering a scholarship to a disabled journalist at the time and I had to study journalism at university And put to them that we make a podcast series about disabled parenting, and we were very shocked at how well it went from people with disability reaching out and saying This is what I needed to feel like I could be a parent, and also non-disabled people reaching out saying that I And the stories of other disabled parents in the series had changed their mind, that they had assumed that some people with disability shouldn't and couldn't parent.

Eliza Hull:

So that was like, oh okay, this is so great, and so that's when I decided that it needs to be a book. And so it's become a book called We've Got This Here in Australia and then released in the UK And then just very recently in the US with various disabled parents from Australia, canada, the US and the UK.

Lainie:

So you interviewed all these people for the podcast, or was this after? Yeah?

Eliza Hull:

so, first of all, it was the podcast that I interviewed and went around Australia and interviewed those parents And this now is an anthology of me interviewing different disabled parents and also some of the parents writing their own stories. So if they were writers, they chose to write their own pieces and some people opted to be interviewed. I always wanted to make some of it interview based, mainly for accessibility. Some of the parents have intellectual disabilities and wanted to be interviewed. That was their choice, so that was a thing that I wanted to make sure it was a really accessible process for people to be part of.

Lainie:

Is there any stories from those interviews, from the book which I just saw is, like available everywhere now, so very cool. I mean we'll put the link to it on our show notes. But, like thinking of people you interviewed and the parents with disabilities, is there any particular stories that stand out to you that you were like wow, like this is just unbelievable.

Eliza Hull:

I think the thing that kept surprising me was just the common discrimination faced in the medical world, so in hospitals. for instance, in this in the book there's two deaf parents that were, i guess, congratulated And you know when their child was hearing. so, like said, you know, congratulations, they're not like you. And also not being given interpreters to even birth their children, so they didn't have that access to be able to know what was happening. Also, the stories from parents with intellectual disability where their children were taken from them without any adequate support. And I think for any parent it's quite scary to bring a child home for the first time. you're like you don't know what you're doing. It's even you can read all the books but you still don't know what you're doing when you first bring a child home. So to have 17 years later.

Estela:

Yeah, exactly.

Eliza Hull:

Totally Yeah. To have the added complexity of then having an intellectual disability and then not being given any support, any education, and then having your child taken from you without being given a chance, to me just feels ridiculous And I can't believe it's still happening And I think there just needs to be more, more support in those spaces for those parents. But there are some really honest stories in this book. You know ones of a lady called Michelin Lee who's a wheelchair user and talking about, you know, when she fell out of her wheelchair, out of which was picking her child up from school and feeling embarrassed for her child, feeling ashamed and feeling like her child didn't want to walk beside her because they were embarrassed, and then realizing that actually their child was never embarrassed about them, it was just they were embarrassed about themselves, like. I think that is quite an honest story, so that to me I always get quite emotional when I read that one because it's so honest.

Lainie:

One of the things that we carry right. It's just, you know, when you yourself feel like insecure, still, even if you are, you think of yourself as a confident person with a disability. You know inside that inner voice, you know that you've picked up on all the ableism over the years. You your go-to is oh, it's because 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 do with their parents. They simply walk out of the house and they don't like what they're wearing. It has nothing to do often times with the disability, but that's our automatic go-to Like oh, that must be it, right.

Estela:

But also, you know children can be cruel and they see a parent that looks different and you know they unfortunately they will find the smallest thing to pick on about a child. And when that child is pointed out and made different because their parent is different, they also have to come to terms with ableism as a child of a parent with a disability And they need to navigate that world as well and inform others and go through those processes, just like us many times So, And we've talked about, like in an episode we talked about the gifts of disability, right?

Lainie:

And I think in our podcast episode with Mindy Henderson from MDA we talked about all you know, like how many wonderful gifts she has inadvertently, unintentionally, you know, given her children just by herself having a disability. And you know you raise, you know our goal is all parents, whether we have disabilities or not, is to raise good human beings that we're proud of, that are proud of themselves. And you know, i mean I think having parents that are disabilities automatically equips you with skillsets that you don't get, you know, in a classroom or anywhere else. You know, i say in your book, when you're talking and hearing, and you know people are sharing their stories. You know, were there gifts? Like do you remember any of the stories? and thinking, wow, like this child is like going to be? you know, like like they're so lucky, you know, because they have this parent with a disability.

Eliza Hull:

I would say all of those children actually, yeah, i would, yeah, all of those children end up being children that are really inclusive and of all people and kind children and open to all. You know diversity in all its forms And I think that, yeah, the benefits of that is really really like very strong. Within the book There's an incredible disability advocate, Nina Tame, that's based in the UK And she's part of the book And she has a child with her disability cerebral palsy And I think having a mum like her, when she's such a fierce disability advocate, you can just see that her child's growing up in that space of awareness and realising that they, you know, don't need to change. And I can just yeah, i can just really see how powerful that is to have a mum like Nina. So, yeah, i think, across the board, the book really shows that having a parent with disability there's just so many positives that I think you're right, it doesn't happen for any other reason than it just you just kind of by having a parent with a disability that takes place.

Eliza Hull:

I think I see that in my own child in the way that she holds my hand, like she just always grabs my hand when we're going across the road in case I fall over, 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 that space of like wanting to look out for me, and then seeing that take place at school, where her teacher has told me that if any child needs anything or she's just always there and a very kind person, i think that's going to help her in the world and help her be a kind adult.

Estela:

Yeah, that level of compassion. And you know, speaking of children, you kind of took your writing skills to a younger demographic as well with a second book, and this one's coming out in September. is that correct?

Eliza Hull:

Yeah, so it's just about to come out in the US. It's out every mostly everywhere else And it's called Come Over to My House And it's actually, in a way, like a sister book to where we've got this in that a lot of the families that you meet and we've got this portrayed in Come Over to My House. So you'll meet a family that has a deaf mother, another family that has a blind mother, another family that has a child that's a wheelchair user, a family that have dwarfism, a family that has a mother with an intellectual disability, and you were invited inside their homes and realised that, yes, they have a disability, but their homes are A, just like any other home, but B are wonderful, colourful, fun homes that show the adaptability and the creativity of how people with disability adapt in their home lives and home spaces.

Estela:

Yeah, i love the family dynamic of the book. I feel like it's not something I've seen before. Thankfully there's an increase in disability-inclusive children's book. but the way that you frame this just inviting people behind the scenes because I don't think there's a lot of books that do that and show the family dynamic and how normal it is to each family It's just inviting you into their space and into what joy looks like for them.

Lainie:

For sure like a little series, like a TV thing, because in a positive reality show of showing when I was young there was a show called Deedle Doors. I think it was only in Detroit but basically it was like a little religious show. Sunday morning you went into little kids kind of like, met with a Mr Rogers kind of person and then they went off into each room in the house like a different door and it showed different people's occupations When they did. How cool would it be to have a little TV show kids' show. Because the idea is that when you watch these shows even reality shows you're looking for, you're looking well, not reality shows. I guess when you're watching shows you're looking to see what's familiar and when you see that people are just like you, even though they don't always look like you, that's the most empowering thing for everybody.

Eliza Hull:

Absolutely yep, And I think the more that we. I guess it was like an invitation for people to step inside these homes and to be part of those homes, to take the stigma away.

Estela:

What's the reaction been like so far?

Eliza Hull:

It really great. I think the two parts to that one is that when children, like families, have reached out saying that my child has taken this in to read it to their class and that's because they have a disability and so it was that representation they were seeking. And then also non-disabled families that didn't know how to have the conversation about disability, didn't know what it would be like to go to a deaf person's house, Like how do you tell them that you're at their front door, like that you come over to my house, How would you communicate with somebody that's deaf if you went to their house? All of those kind of questions that children and families didn't know the answers to and therefore hadn't kind of stepped in and had those conversations. I think it's been a really great conversation starter about disability.

Estela:

The classroom is such a oftentimes a missed opportunity to really start the conversation around disability inclusion. because it's when children are not tarnished with those stigmas and that judgment and they're just at that young age where like, oh, they're just curious, they're not really judging, but they're curious and they're not afraid to ask those questions and they want to learn. And so it's such a formative time to be introducing them to things like this, because it really does lay down the foundation for how they view the world, even if it's not something that touches their family.

Lainie:

What's amazing to me. going back to you is like how much you are doing and how much you've done, and like I think back to when we first started this podcast and I first met Estella and like she was like you know, one of the first people I met with CMT, that I was like, oh, she's kind of like me. And here you are with CMT all the way in Australia. Well, from England, you sing, you get on stage, you're an author children's books and of books for everybody and you've done so much. Like it's amazing.

Lainie:

So you know, when we talk about like kids and you know how they learn or can learn and the gifts they get from parents with disabilities, really you're the opinion of, like how you live with your disability. It's not just, oh, you know, i wouldn't say that all kids are better off with parents who have disabilities. I would say they have a lot to gain from parents who are, you know, trying to live their best lives despite having physical or emotional, mental, whatever challenges you know, And you sound like you have not let that stop you.

Lainie:

Yeah, yeah, I think it did.

Eliza Hull:

Yeah, i think it did for a little while, but now definitely not, and I think that it felt very purposeful, actually, like when you speak your truth and then want to change spaces that have been really hard for you. You want to change the world for the future generations.

Lainie:

I think that that's felt very purposeful and meaningful And how do you deal personally with, like the progressive nature of our disease with sarcomery tooth, although every type is different and not everyone's disabilities progress in a linear fashion or whatever. But you know, my one of my kids was once a singer now they're not so much a singer, but you know 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't play guitar? What's going to happen if my voice, you know, my diaphragm is weak and I can't hang.

Lainie:

Like how do you personally deal with those unknowns and, as since we're on the subject and about parenting, and like how do you explain those unknowns and how you're dealing with them yourself When you don't even know, probably to your own children?

Eliza Hull:

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 not for you, so you always have to be constantly problem solving like how am I going to get into that building, or how am I going to get up there, or how am I going to navigate this group of people that are looking at me like this, or all of those things are just constant, being adaptable, being creative, and you're thinking, i think, that because of that, it's like I've just learned to adapt really quickly. For instance, i started playing. I've always played the piano. Now I can't play the piano, so it's like I just have to adapt and now I don't play piano anymore. Really, or this is ways that I've just, like, had to.

Lainie:

I just want to start there for a second because I don't want to minimize like that loss, because that is a loss. So, even though you've learned work, you know work around and you've obviously, like many people 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 and a talent of playing piano and now you can't play piano like. So You know, for listeners who are out there who are thinking about their own gifts that they may not be able to use to their abilities anymore, i don't want to like.

Eliza Hull:

I don't want to. I don't want to sound like I'm ultra positive, because I'm not always ultra positive. There are hard things, like today. I tried to walk to the coffee shop and it really really hurt like a lot. I was in so much pain and I just felt terrible Like it just felt like the world was crumbling at that moment. So I'm not saying everything's always fine and easy. Sometimes it's really really annoying and hard And I just wish that I could just get to the coffee shop with my family and not be in pain. But I think what I have learned to do and again, it might sound like I'm ultra positive, but I can't play the piano but now I can move my hands in an expressive way as I'm singing And I feel like that's really that's really adding to my show. So it's like turning it all around and going okay, what am I adding by not playing the piano? What is this? what is life doing for me instead of against me? I guess that's how I've tried to look at it.

Estela:

I love that. I think I can relate in my own way where I used to be. I went to art school, right, i used to be. My talent growing up obviously, was in sports. I really prided myself on being able to be creative in that way with pencils and charcoal and painting. And now it's really difficult for me to hold a pen or a pencil, let alone draw a picture. And so you know, i think the way I've been able to kind of navigate that loss is that what's really underneath the ability to draw is that creativity. It hasn't gone anywhere. It's just been redrewed into things like this podcast or the work I do with H&F or the other advocacy workshops that we do and all those things that, really, what I like to think, repurpose my pain and help people right creatively, but sometimes, you know, it does just suck.

Lainie:

Yeah, and it's interesting, and while we're on the subject me, feel free to cut this out. So, but my mom passed away like five years ago, but she had really bad CMT, like she had hands that were always to my memory as a little kid. She couldn't do a lot, whereas I'm very, very active, and my kids, i don't think would say that you know. So I just I have all these needle points that my mom made. One is of me.

Lainie:

It's actually funny. It's like I have black hair and I'm holding a sex at the avenue and I threw cheap bag And so she must have made a portrait, yeah, so anyways, i have it and I'm looking at the intricacies of this needle point and I'm like I have no idea, like I don't remember myself ever being able to a rug hook, let alone needle point. Like I feel like my hands were never that steady and I would never be able to hold a small thing. I don't know. I wish she was around to be able to ask her, because I have no idea if, like she definitely did it, it was her needle point, but it's just so interesting to me anyways.

Eliza Hull:

And I think that that really shows like we're pretty determined. are we like when we You?

Lainie:

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:

We find ways to adapt, and I think you continue to do that, eliza. whether you're playing the piano or singing, sitting or standing, i think it doesn't take away from the powerful message that your music is sharing with the world, and I can't wait to share this episode and your music and your books with our Yes, so cool and people are.

Lainie:

You know, people are going to go crazy for that song because it hits home, it's so. I mean, you know, here I still and I had took something completely different away from the meaning of that song I listened to and I was like, oh my goodness, like this is, this is me. You know, it's really great. We can't wait. I can't wait for people to hear it and your book is really cool. So you know, it's the first anthology of its kind. We're featuring disabled parents talking about what it's like to have children and all of that. So it's all good stuff. I'll leave my an Amazon review as soon as I thank you. Please do that would be great. It's awesome. Thank you so much. It's like we're meeting with just a multifaceted artist here. Everyone. How lucky are you.

Eliza Hull:

Thank you, it makes me want to go get creative.

Lainie:

What could I do?

Estela:

Not saying I'm so grateful that you joined us and spent some time with us. Eliza, we wish you nothing but the best. We know this is just the beginning for you and we look forward to seeing what you do now. Thank you so much, thank you.

Lainie:

Everyone Bye, everyone, all right wonderful.

Estela:

Hey embracers. Thank you so much for listening and supporting the embrace it podcast brought to you by launchpad 516 studios executive, produced by George andriopoulos and hosted by Laney ishpia and Stella we go. Our music and sound effects are licensed through epidemic sound embrace. It is hosted with bus brown.

Lainie:

Do you have a disability related topic you'd love for us to feature, or could someone you know be a fabulous guest on our show? we would love to hear your comments and feature them on our next podcast. So leave us a voicemail, or you can even send us a text to 631 517 0066.

Estela:

Make sure to subscribe to this feed wherever podcasts are available and leave us a five star review on Apple podcast while you're at it. Follow us at embrace it underscore podcast on Instagram and make sure to follow all the great podcast produced by launchpad 516 studios.

Lainie:

We hope you join us next time and continue to embrace it.