A music producer once told Eliza Hull that she shouldn’t walk in her music videos. Because if she did, nobody would listen to her songs. So she hid her disability from the industry and her fans for a very long time.
But enough is enough. And in the clip to her new song, she’s pushing back on that ableist approach.
“I’m going to walk. I’m going to be me,” she says. “And hopefully, by being me, I can allow others to be themselves.”
I saw Eliza Hull perform at the Aussie BBQ in London in May this year. We briefly spoke after her set, and she was keen on a longer conversation about her music and disability activism.
Those are the two hats she wears primarily. But the singer-songwriter, originally from the rural town of Castlemaine, VIC, is also a writer, editor and access consultant.
When we caught up on Zoom, she honestly and openly recounted her story, which is very much linked to her disability.
Image description: Left – Eliza in a white jacket, with her hair up, smiling, sat against a turquoise background. Right – Saba in a grey hoodie, with hair tied back, smiling, sat against a pink background with letters spelling ‘Silly McWiggles blog’ in a white circle.
Many times, I sensed conflicting emotions in the artist’s voice when she gave me examples of certain behaviours and attitudes. She carefully weighed her words and, sometimes, paused to find the right expression. And by the end of our chat, I realised that her perception of her disability radically changed in the last few years.
But to fully grasp the context of Eliza’s story, we need to go back to her childhood fiirst.
When she was five years old, Eliza was diagnosed with CMT – the Charcot-Marrie-Tooth disease – a hereditary neurological disorder, affecting a person’s motor and sensory abilities across different body parts.
It manifests itself in the way Eliza walks. It’s visibly different – she rocks from side to side. Additionally, she falls over quite often and is in pain a lot. It also causes a lack of sensation in her lower limbs. She might have cold legs even on a hot summer day, which – in turn – influences her body temperature.
When Eliza was asked about it in her high school years, she told people she had “a leg problem.” Back then, she didn’t have the knowledge she has now about the identity of disabled people.
What she did know as a teenager already, though, was that she wanted to be a musician. The problem was, she didn’t see any representation of disabled artists in mainstream media. So she was led to believe that she should keep her condition on the down low and not talk about it. Ever.
Video thumbnail description: TV screen with a band performing live
But in Eliza’s case, CMT has had a pretty big impact on her career as a musician.
Consequently, when she performed, she would always have the curtain pulled, so the audience wouldn’t see the way she walked or that, sometimes, she was lifted on stage. And whenever she would meet somebody from the music business, she’d make sure she sat down first.
“I was afraid I wouldn’t get the opportunity”, she confesses. “And the opportunities are hard to come by in the music industry anyway. It’s a tough industry. So I didn’t want to add that extra layer of disadvantage, I guess.”
Asked about some positive experiences regarding her career as a disabled musician, she thinks for a moment. She says her friends, family and the people she’s worked with from the beginning have always been incredible on that front.
Then, she tells me a story about a venue that was very apologetic when they realised their space wasn’t accessible for Eliza. They acted quickly and adapted it, lowering the stage to the ground level. “Sadly, I can’t think of many more stories of that kind”, she summarises.
At some point, that constant need to think of ways to hide her disability became exhausting. “It was also logistically heavy to try and organise ways to… not be seen”, she adds sombrely.
So what was that one thing that prompted the shift to not only start disclosing her condition but also become a disability advocate?
“Many people might not know it, but it was because of Dylan Alcott“, she admits.
Dylan is a Paralympian, radio presenter and motivational speaker, named Australian of the Year in 2022. He is also the founder of Ability Fest – the most accessible music festival in Australia [that I covered here].
Eliza was encouraged by his positive attitude towards his disability and all the projects he’s involved in. Thanks to him, she slowly started realising that she was “sick and tired of hiding”.
After Eliza’s sister messaged Dylan on IG, mentioning her condition, he invited her to the inaugural Ability Fest. He also asked if she’d be willing to do interviews around the topic. Surprisingly, even for herself, that amazing opportunity overwhelmed Eliza at first.
She simply didn’t know how to approach it. On the one hand, she desperately wanted that change to finally come. On the other hand, she kept worrying about other people’s feelings instead of her own. She didn’t want people to think she had some hidden agenda.
She even recalls having a cry at her friend’s house, asking rhetorical questions, like “How do I flip my identity? What are people going to say?”
Around that time, she also wrote an article for a magazine about being disabled. To her surprise, the response to it was very positive.
No wonder. According to statistics, around 20% of the Australian population lives with some form of disability. We’re also witnessing a huge shift in the world nowadays. Diversity is finally being amplified and celebrated. And since Eliza knows first-hand what it means to face barriers, her story resonates with people. That helped her move into the advocacy role.
Since then, she’s been invited to perform or speak at important industry events, like the BIGSOUND and CHANGES conferences in Australia or SXSW in Austin, Texas.
She also recently joined Music Victoria – the regional music organisation for that state. As its board member, she helps ensure that certain events, like the Music Victoria Awards, are more inclusive by providing Auslan interpreters or staging them in venues with accessibility features.
Here, she also offers me an interesting insight.
Even though she understands that many venues are struggling post-COVID or have limitations in making the necessary adjustments due to their heritage building status, Eliza thinks accessibility is also a question of business and bringing in more income.
After all, both disabled musicians and disabled fans want to be a part of the live music industry and spend money like the rest of the population. “So, ultimately, it means more punters through the door”, she says. “It’s a win-win for everyone”.
I ask Eliza about the ‘Access All Areas’ segment within the Isol-Aid Festival, which turned out to be quite successful.
During the pandemic, many artists started live-streaming their gigs. So she came up with the idea to invite disabled musos from overseas for an event that was a mix of interviews and music.
She googled the biggest disabled artists worldwide and reached out to a bunch of them. Two UK musicians, Ruth Lyon (with whom Eliza was touring in the UK in May 2023) and James Holt (a deaf musician “who sounds like The Beatles”, according to Eliza), and an American artist Gaelynn Lea were the ones she interviewed on air.
Eliza remembers it was really cold in Australia on that day, so everyone was stuck at home anyway. As a result, over 50 thousand people tuned into the stream. Many of them surely hadn’t seen disability like that before.
On a different note, Eliza is sure that the online format is fantastic for certain groups that might not always have the possibility to assist in concerts face-to-face, like those living with chronic conditions, new mothers or pregnant women. So having it both ways (in-person and live-streamed) is the way to go, according to her.
“We’ve been fighting for it for a long time, and it took a global pandemic for it to be achieved”, says Eliza bitterly. The disabled community had been requesting access to remote working opportunities, medical appointments or job interviews over Zoom for years, she explains further. The same goes for the music industry. “It seems it takes non-disabled people needing something for it to happen”, she adds.
She hopes venues will soon start thinking of having basic computer systems with cameras to stream concerts on social media or other virtual platforms, permanently. That could also be an additional revenue stream for artists. They could offer the live-stream as a separate ticket price or as part of a merch deal.
Speaking of money, Eliza made sure she paid all the artists involved in the ‘Access All Areas’ event. So she’s thinking of applying for another grant to stage a new edition.
Despite all the great things she’s already achieved as an activist, she admits it’s not always that easy.
Yes, it’s a great feeling to be herself now. But it’s also tiring, in a way, to speak about it all the time. “I’d say most of the things I’m now being asked about is my disability. It’s a massive flip for me”, she claims.
So I can’t help but ask how she keeps the conversation focused on her music and not only the activism part when she interacts with journalists.
“It’s almost impossible right now,” she states. That doesn’t mean it won’t be in the future, however. Hopefully, we will get to that point one day when disabled artists are played on the radio and represented in the media. And it will become so ingrained in society that it won’t feel exceptional anymore.
Her recent experience touring in the UK has also been quite revealing on that front. She shared her observations and “lessons for the Australian industry” in an article for The Music Network.
She pointed out in it that she sees much more dedication to change in the UK than in Australia. For instance, festivals like Glastonbury book disabled musicians, BBC prioritises and amplifies them frequently on its channels, and venues pride themselves on being accessible.
She also quoted shocking statistics from Attitude is Everything – a British organisation dedicated to improving access for everyone. Apparently, “over two-thirds of disabled musicians surveyed said they still hid their disability for fear of damaging their careers, and had to compromise their health to perform live.”
And again, she received unexpectedly positive feedback from the music business. Even though the article was published only a couple of weeks ago, a lot of people have already contacted her to say they also hid their disability out of fear of losing their job or not being able to keep up with other staff. “I guess that proves how ableist the world still is”, she says.
That’s also why music is so important to her.
Firstly, it allows her to express what she’s feeling. And secondly, it gives her a sense of purpose and meaning when she can connect with an audience and feel what they’re feeling.
That moment when people approach her after the gig to tell her that she inspired them to step into their identity as a person with disability or chronic illness is definitely the highlight for Eliza. She reckons it’s amazing she can influence people in that way.
Recently, she took another revolutionary step in her career and released a video for her newest single, “Running Underwater”, featuring herself and a disabled dancer.
And it’s not something you often see in the media. “I had to really think about music videos that had disability in them. It was hard to think of them”, she admits. And she really wanted to finally portray herself; especially since “Running Underwater” is a very personal song.
It’s the first time she’s written about her disability and how it’s influenced her life and career as well. And she doesn’t hold back when she sings: “Maybe I don’t fit in / With what you want me to be / This cookie cutter version / It’s not doing me any favours / I don’t want to bring fuel to the fire / But I got to get louder.”
She’d been sitting on that song for quite some time. I remember she played it on the piano on Aussie TV during the pandemic after the Q&A chat about a new approach to working conditions. It was warmly received, so she started playing it at her shows. And finally, she released it on May 10th, 2023.
For the visual part of the track, she invited Roya The Destoya, a dancer with one leg who busks on the street in the world, to star in the clip. Roya had used the early demo of the song to dance to in public and had a hugely positive reaction to it. So Eliza thought it was a beautiful marriage to combine their creative forces.
Roya came up with the moves, with Eliza’s input. And through that choreography, she was able to perfectly express the singer’s feelings and emotions. She nearly became Eliza’s alter-ego in the video.
It also turns out that “Running Underwater” is one of the songs from the Here They Come EP, coming in September 2023. It’s a collection of empowering songs about people speaking their truth, against all odds. Some were written in collaboration with Eliza’s peers, singers Gordi and Odette, who also care about advocacy and disability.
Many of Eliza’s favourite artists are women, I find out. She lists diverse influences, e.g. Lykke Li, Florence + The Machine, Taylor Swift (“Dare I say it?”, she adds playfully), Sade, Janis Joplin, and Ngaiire, amongst others.
Eliza is also committed to amplifying fellow artists from the disabled community, not only the female ones. So she’s put together a special playlist and shared it with the radio “because people often don’t know where to look”. She keeps updating it regularly.
When we spoke on Zoom, Eliza had only one gig left on tour with Ruth Lyon. She was quite excited about it because she was finally going to meet James Holt (the deaf musician) in person in Manchester, where he’s from. She also mentioned Ruth would, hopefully, support her on tour in Australia soon.
And it is an uplifting end to our conversation.
Because when Eliza was growing up, disability was perceived as something you didn’t talk about, a deficit. But it is a part of human existence. It can be neutral as well, not always along the lines of “that’s the best or the worst thing that has happened to me. It just IS me. That’s who I am. Something that has provided me with a purpose to try and change things”, she says proudly.
That’s what she’s hoping for, ultimately. That one day, when she tells important music execs in leadership positions that she’s an artist AND disability advocate, they will know how to deal with it. And that it will finally become normal and safe to be disabled in the music industry.
I also covered the accessibility topic in my ‘Silly Talks’ podcast. Check out two episodes with disability advocate Morwenna Collett below:
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