In this episode, we were thrilled to chat with the amazing Eliza Hull — a talented musician, proud disabled woman, passionate disability advocate, and all-round brilliant human. We talked about the barriers disabled artists face in the music industry, what it was like for Eliza to begin identifying as disabled later in life, and how powerful it is to find community with other disabled folks. ✨
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Transcript
Larissa: This podcast is recorded on the lands of the Wurundjeri people of the Kulin Nations. We pay our respects to the traditional custodians of this country and elders past and present. We extend our respects to any First Nations, Aboriginal and Torres Strait Islander people joining us today.
Welcome to today's episode of No Spoons to Give, the podcast where we explore life's ups and downs with neurodivergence, chronic illness, and disability, and we chat with the voices that make our community so wonderful. I'm Larissa, and I've got the lovely Maddy here in the studio with me today. Maddy, how are you?
Maddy: I'm doing well. How are you going?
Larissa: I'm good. It's pretty warm in Melbourne today, but yeah, we're surviving. We are getting through it. Us POTsies are doing what we do best and we're sipping our electrolytes.
Maddy: That is for sure.
Larissa: This morning, I'm going to go a little bit rogue again and recommend a YouTube channel, and also I highly recommend following this person across all of their social media channels. My recommendation for today is Zara Beth. So she's a content creator, artist, musician, and writer from the UK. We've also worked with her before through Spoony, and yeah, she's just an incredible person. She's created a safe neurodivergent space online, and her YouTube channel is one of my favourites to watch. Zara has Tourette's syndrome and also Functional Neurological Disorder, and she also shares a bit about her mental health challenges and Autism. Her channel was just incredible. She shares advice, personal experiences, and just insights into daily life as a disabled person. So definitely recommend getting on the YouTube train and checking that one out.
Maddy: I'm going to have to. That sounds fantastic. Zara was such a wonderful person to work with, so I am excited to see what she has been cooking up.
Larissa: Absolutely. What have you got for me today?
Maddy: Surprise, surprise. I have a book to recommend today. It's called, We've Got This: Stories by Disabled Parents, edited by Eliza Hull. It's a heartwarming and fiercely intersectional nonfiction book about parenting with a disability, and it features Deaf, disabled, and chronically ill parents who share their stories about the highs, the lows, and unexpected moments of being a parent. Now, I'm not a parent myself, but I love reading outside of my own experience, and this book was just so full of love and it really made it a joy to read.
Larissa: I love that. Also, not a parent. But yeah, that sounds something that I would love to read. So thank you for the recommendation.
Maddy: My pleasure. So today, we are actually chatting with Eliza Hull, the author of that book. She is an award-winning musician, writer, journalist, and disability advocate. She's a proud disabled woman with a physical disability called Charcot-Marie-Tooth.
Larissa: Welcome, Eliza. Thank you so much for joining us on the podcast this morning. We're very excited to be chatting with you.
Eliza: Thank you for having me.
Larissa: For those who don't know you, Eliza, could you share a little bit about yourself?
Eliza: I am a musical artist. I'm a writer. I have released two books so far with one to come out this year. One is a children's book and the other is for adults. I developed my disability when I was five years old, and I guess I've really only started to advocate for disabled people in the last say five or so years because yeah, for a long time I was guess holding onto a bit of internalised ableism, and so it's only been a newly part of my identity.
Maddy: So from personal experience, I know that living with a disability can be quite isolating sometimes, but having a community who's understanding and supportive can be quite a lifeline. How important has community and connecting with disabled people been for you?
Eliza: It's been life-changing. So I guess that it's started for me when I was debating having children and I think I was just really seeking other people that had a disability and were also a parent. So I went on to create an ABC series called 'We've Got This', about parenting with disability that then was turned into a book and that was that really moment of searching for the community. And I travelled around the country and interviewed lots of parents with disability, and now a lot of them are lifelong friends, and just I guess it helps you feel less alone and there are a lot of times where you just need advice, like logistical advice.
How do you go about adapting in terms of your parenting, but also just connection, having people that are there for you that understand you.And a lot of non-disabled people, I have a lot of great friends, but there's something different when there are other people with disability because you feel completely safe to be yourself. You feel like you're not alone. And that has been a massive game changer for me because I guess it's enabled me to be more myself and know that my experience is not isolated. Yeah. I guess just makes me feel like I can actually have somebody to lean on when I feel the ups and downs of being a person with disability. So community, I honestly feel like it's really been a way for me to fully identify as a disabled person.
Larissa: What advice would you give to others on being a good friend to someone who's chronically ill or disabled?
Eliza: I guess what I've struggled with, with people that don't have a disability is people will often say to me, "I don't actually see your disability," and I know that it's not true because my disability is one that is visible. So I have invisible parts to my disability, but the most prominent part of my disability is that I walk with a different gait and it's very noticeable. So I think that when people say, "I don't see your disability," they think that that's a really positive thing to say, but actually it can be quite hurtful because it feels like they think disability is a negative or a deficit and therefore, I don't see you in that category. Whereas, I want people to see my disability because it is visible. It's a huge part of me. It's my major part of my identity. So I think that would be a first thing.
And I guess just asking questions, I feel like that is such a simple thing, but for anyone as a friend, I think it's far better if somebody invites me somewhere and then says, "Hey, just want to let you know there's one step up into the building, is that going to be okay for you to get in," versus not inviting me at all. So I think some people do get a little afraid that they might've said something wrong, or action something that maybe they didn't think about in advance, and then they step into fear and pull back. Whereas, I much prefer someone just to ask the questions and to step in and learn more about my disability.
Maddy: So you're a very talented musician with a long and successful career. It was only recently that you made the decision to write about living with a disability in your beautiful song 'Running Underwater'. I really felt those lyrics in my heart, they were just so very much captures that feeling of being different and struggling to show that to other people because they don't really want to see it. So what made you decide to write music about your experiences with disability?
Eliza: Yeah. It was odd that I hadn't done it earlier. I have had my disability since I was five years old, and that was actually the exact time that I started to develop my disability when I was five, and started to fall over at school and there were a lot of hospital appointments and just questions. I didn't really know what was going on and why I was having to go to hospital all the time. So in a way, music, it's just been everything to me to be able to express myself and to get those complex feelings out. So I started actually writing songs when I was about 14, 15, and I can't believe that I never really spoke about it through songs.
But I think that that comes down to that fear. I never saw a musician with a disability on Rage or on TV or all the awards shows, always had multiple steps to receive an award, and that made me feel like, "Well, that's not possible. I can't get up all of those steps." So I just tried to hide it as much as possible. It wasn't until the last couple of years where I guess I just got emotionally drained of hiding it and realised that it was really doing a disservice to myself, and to others if I didn't identify with having a disability and didn't speak about it because it is inside me.
So when I sat at the piano and decided, "Okay. I'm going to write a song about disability." 'Running Underwater' really was formed in about 15 minutes. It just felt like it was so within me and just poured out of me. And it was probably one of the most honest songs that I've written. It speaks about just feeling the weight of that analogy around water and running underwater. That's what it feels like to live in a body that is different, to live in a world that's inaccessible, to face constant staring and discrimination. I also talk about being medicalized as a child when I was five and having to walk in a straight line, which was absolutely impossible. And just feeling like I was on show and always I guess being judged or even researched by medical professionals.
So it's been nice to have other people with disability feel connected to the song, but it's even been even more interesting when somebody says, "I don't have a disability and I feel connected to this song in other ways," because we are diverse as people, and I think difference is what makes us really unique and beautiful. So it's been nice to connect with even non-disabled people with the song.
Larissa: Eliza, do you have any advice for disabled or chronically ill people who might want to break into the music industry?
Eliza: Yeah. It's a great question. It's so tricky. I think the music industry is a really tough industry. I'm not going to lie. And you have to really be willing to stick at that because you're going to get a lot of yeses and noes all at once, and I've had to navigate that. And you got to have thick skin really, because it can sometimes really affect you, I guess, the noes, but they're inevitable. I feel like advice I'd give is be yourself, and if you do feel comfortable talking about your disability, then do, because I really want to advocate to radio stations and to record label and publishers that we exist because I think for too long, there's been this idea that if you have a disability, you won't be a talented musician. And I'm trying to prove that's not the case. I really want to see radio play artists with disability across the year and not just on International Day of People with Disability.
So I guess, yeah, just be yourself. If you're comfortable to disclose you have a disability, then I think that can be your unique part of who you are. Connect with other musicians with disability. I have a playlist online on my website that lists loads of artists with disability, and I think it's a really beautiful inclusive community to be part of. There's lots of funding options to record, and you can go under the deaf disabled chronically ill category, which gives you that opportunity to reach your peers because that's who's on the panel when they judge those applications.
And I guess just being up front and with your needs and requirements. For too long, any festival that I got offered to perform at, I would often either not disclose my disability or not disclose that I had access requirements because I was afraid if I did, I'd be put in the too hard basket. But now I'm really clear with just saying, "I need an accessible toilet. I need to be able to get up on the stage," which you feel like would be a really simple ask, but funnily enough, most stages are inaccessible. So I think it's just important to know that you do have rights as a musician to be able to safely access your workplace because at the end of the day, it is a workplace. So just to provide your access requirements, just like you would provide a rider for the food or drinks that you'd like, providing an access rider is a really important step so that you can feel like it is an inclusive workplace, and it's a place where you feel you can access.
Larissa: That's such fantastic advice, and I'll definitely be checking out that playlist as well. That sounds incredible. Yeah. I think something our community would really love.
Maddy: Yeah, absolutely. Jumping back to another of your many talents, you are a prolific writer and editor. You've written an incredible anthology about parenting, contributed to some other great anthologies and written a picture book and your second picture book, 'The World We Can Build', is about the social model of disability in a kid-friendly way, and it comes out in April. I have to say, I love picture books and I'm really excited for this one. With your schedule, do you get any opportunities to read and do you have any recommendations?
Eliza: That's a great question. I'm really trying to read every night at the moment because I feel like looking at my screen is not working for me, and just constantly scrolling through social media, especially with the way the world is right now, it feels a lot. So I'm just picking up books, reading them most nights at the moment. I love memoirs. I love reading nonfiction books. I just finished the Clare Bowditch book that touches on her life as a musician, but also growing up with anxiety and talks about body image, and she just writes in a really, I guess, personable but also funny way. So that was Clare Bowditch's memoir was a really great read recently. I also love listening to audiobooks and podcasts as well, because I do a lot of driving. I live in regional Victoria in Castlemaine. I drive to Melbourne most weeks for anything work related, and I love listening to podcasts and audiobooks that way.
Maddy: Yeah. It's such a great way to be able to enjoy the books and different people talking about such interesting topics while also you are able to do other things. I'm definitely going to have to check out that book recommendation though. I think that's going to be next on my to read list. Thank you.
Larissa: If people want to connect with you, Eliza, where can they find you?
Eliza: Elizahull.com is probably the quickest way. I'm also on all the social media channels.
Larissa: Awesome. And yeah, we'll link your socials and your website in the show notes. That's probably a great spot to wrap up on. Thank you so much for coming in today and chatting with us. Yeah. It's been amazing chatting with you and learning more about you and your story and your journey with your career. So yeah, thank you very much.
Maddy: Yeah. Thank you so much, Eliza.
Eliza: Thanks for having me.
Larissa: This podcast is brought to you by Spoony, a safe space for neurodivergent, chronically ill, and disabled people to make friends and find support. Spoony is the world's first social app designed with accessibility at its core. If you liked this episode, it would mean the absolute world to ask if you could hit subscribe or share it with a friend. If you'd like to join our Spoony community, you can download the app via the app store or Google Play. And if you'd like to keep up to date with us on social media, you can follow us by the links in the show notes.