Walking her own line

Footsteps echoed on concrete as Eliza Hull reached the piano. She sat for a silent beat before music filled the vast room. Her ease as cameras rolled was decades in the making.

The Victorian musician, writer and disability advocate was five when tests revealed she had Charcot-Marie-Tooth, a genetic condition that damages the nerves in the arms and legs.

Growing up, Hull’s thoughts mixed between a music career and a wish to be partly invisible.

“When I discovered how I could use my disability for my purpose, that was a real ‘ah ha’ moment. I think throughout childhood, I had really wanted my disability to disappear because it was hard,” she told FW.

“There was a lot of pain, a lot of surgery, a lot of people that would stare or say things to me and so that kind of fed into that belief that disability was something that should disappear or go away.”

Hull invited disabled artist ‘roya the destroya’ to perform with her live on stage. Image credit: Eliza Hull

This unwanted societal judgement followed Hull into her teenage years.

“One moment that comes to mind is watching the ARIA (Awards) and seeing my favourite band, Killing Heidi, run up and down multiple stairs to win an award and thinking, ‘Okay, I can’t get up onto that stage. That’s not going to be possible,” she said.

“And I think those things that you tell yourself are really powerful, those moments can actually shift the way your life pans out.” 

Hull’s condition affects her legs. She cannot walk up stairs without a handrail or assistance.

She has found a saviour of sorts in music. 

In her latest song Running Underwater, which she described as a “disability anthem”, she revealed how doctors watched her as a child struggling to walk in a straight line. 

“It’s kind of like saying I don’t need to be that cookie cutter version. I can actually push back and be proud to be disabled,” she explained. 

Hull walked her own line to a piano in the song’s 2023 music clip that also featured disabled dancer ‘roya the destroya‘. It triggered debate about representation in the music industry. 

“I go into a lot of different schools, kindergartens, and the questions that I get, the curious minds, and just seeing how having authentic representation is just so powerful… like for the kids with disability to feel ‘wow, I can see myself in this book’”

Music has also afforded Hull to tell parts of other people’s stories – Carly Findlay, the award-winning writer, speaker and appearance activist, among them.

“The first woman that really influenced my work was Carly Findlay. We grew up in a similar area. I lived in regional Victoria and Wodonga, and I always noticed Carly, and thought, ‘I want to be friends with her’,” Hull said. 

“It wasn’t until I moved to Melbourne that I got to really get to know Carly. And I actually wrote a song about her that’s called Don’t Look Away, and it was written for an American compilation called Hear Her Song. 

“It was quite beautiful to write about someone’s life, very scary, but she was really proud of the song and so am I.” 

As well as releasing five studio EPs, working with ARIA Award-winning producer Pip Norman (Baker Boy, Missy Higgins) and touring with the likes of multi-award winning singer songwriter, Clare Bowditch, Hull has published and edited a number of books. 

She counts ‘Come Over To My House’, the children’s picture book she created with Sally Rippin among her biggest achievements.

The book explores the home lives of children and parents who are Deaf or disabled. 

“I go into a lot of different schools, kindergartens, and the questions that I get, the curious minds, and just seeing how having authentic representation is just so powerful… for the kids with disability to feel ‘wow, I can see myself in this book’,” Hull said.

For Hull, who is in her thirties and a mother, her creative driving force is shifting negative attitudes towards those living with disabilities.

“I noticed, even in just my daughter’s school, that there weren’t really any books that showed various people with disability and showed them in a way that was fun and normalised disability,” she said.

Hull’s advocacy for people with disability spans far beyond music. Image credit: Eliza Hull

Her varied work life means her weekdays are constantly changing. One week she might be at a music conference, switch between podcast interviews, run workshops or write. The variety suits her.

“Right now, I’m travelling around the country running songwriting workshops for musicians with disability, and that’s been so enjoyable, just to see the incredible talent that exists nationwide,” she said. 

“Because disabled people, they just don’t get [opportunities]. We don’t get music out there as much, we don’t get the opportunities.”

There are a lot of barriers in the way. 

“When you are in a room full of hungry, disabled artists that have not been given that chance to come forward and share their story and write who they are, it’s like fireworks, and it’s been really, I guess, inspiring,” she said. 

It inspires her to keep pushing with her advocacy work.

“I have been advocating for those really big moments in time, like a big awards show, to have a ramp up onto the stage, I mean that is one thing, but to also have an Auslan interpreter and all the other things that make it more accessible,” she said.

“Not only for the potential artists with disability that might hopefully win that award, but also for the ones at home that are young, that are coming forward, and they get to see that they are invited, that they will be included. Those are the moments that I think can really change someone’s life.”

Hull shared that running the workshops has also influenced her own work. She has a new album on the horizon.

“I do love being alone… I feel like that’s when you’re the most vulnerable, you’re the most honest with yourself.”

“It’s a record about change, and just about how the world feels like it’s constantly changing right now, and finding myself within that and surrendering to change,” she said. 

“So I’m very much in that kind of creative mindset right now, writing a new record, and I’m also writing music for a new film.” 

When she’s not writing music. She’s busy collecting words. 

“I am constantly writing, pieces of writing. So sometimes I might write an article or write pages for a next book,” she said.

In a world surrounded by creativity and sound, Hull also seeks out moments of quiet.

“I do love being alone. I love just sitting there and writing in my journal or sitting by the piano getting all my feelings out. I feel like that’s when you’re in a way, you’re the most vulnerable, you’re the most honest with yourself,” she said. 

She finds joy tucked among the simple things in life.

“I think there’s maybe fear of just living a simple life. But actually, sometimes the simple part of my life is definitely my favourite part – making food, filling the house with beautiful smells of the food that I’m making, reading books, quietly, just looking up at the stars or sky,” she said. 

“I think that was something that I really rediscovered in myself when I moved to regional Victoria from Melbourne, because I had been living in Melbourne, it was very much like, go, go, go, and I think slowing down has been very, very important for my life. And, you know, for people with disability, it’s hard at times to keep going. It’s hard to have that output and work constantly.”

She found the lockdowns during the COVID-19 pandemic brought real change.

“It enabled us to really do the things that we’ve been asking for for a very long time, which was work flexibly, work from home,” she said. 

“It really wasn’t until the wider population needed that that we were actually able to see that shift and that change. I love working from home. You can wrap yourself up in a blanket, you can have the food you want, the cups of tea that you need, and take the breaks that you need. For somebody with a disability like mine, that’s really important.”