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When she had her daughter, musician Eliza Hull couldn’t find any books about parenting with disability – so she created her own. By Carly Findlay.

Musician and author Eliza Hull

Musician and author Eliza Hull.
Musician and author Eliza Hull.
Credit: Cathy Ronald

I first met Eliza Hull the way most disabled people meet – on social media. We soon found we had a lot in common: our age, where we grew up and how we both arrived at a sense of disability pride in our 30s.

Respectful and positive disability representation is important to me and to many other disabled people. We often only trust other disabled people to tell our stories, because the non-disabled perspective can be riddled with sensationalism, pity and inspiration porn.

In 2021, Hull released a song about me, “Don’t Look Away”, as part of the Hear Her Song project. I saw her perform it live at the National Gallery of Victoria last year. Lots of families were in the audience. Just before Hull began to sing, a little girl spotted me. She was apprehensive at first, but when she saw my shoes, which have sequins and rainbow soles, she came up to me. I showed her how the sequins changed colour when she moved her hands over them.

Hull’s song was about my experiences of knowing I was different at three years old, being bullied, and then finding myself when I moved to the city. The little girl at my feet, she was two or three. She was full of loving curiosity and affection as Hull sang: “Moving away, moving on / She grew to love her skin. ‘I don’t want to look like anyone else. Anymore’. / Don’t look away, say hello / This is me, say hello”.

Watching Hull’s work creating acceptance and inclusion in real time was an incredible experience. And it’s indicative of an impressive career.

Hull’s work is varied and keeps her very busy. She works across writing, radio, music production and theatre production, and she’s also a parent and a proud disabled woman. In everything she does, she seeks to improve representation and access for disabled people.

In 2020, Hull created and curated “Accessible All Areas” as part of Isol-Aid Festival. This featured disabled and Deaf artists from around the world and has been streamed more than 50,000 times. Last year she won the 2021 Arts Access Australia National Leadership Award, the Music Victoria Amplify Award, and advised organisations such as the Australasian Performing Right Association (APRA), Arena Theatre and Creative Victoria on accessibility.

Hull recently performed online at Recording Artists and Music Professionals with Disabilities (RAMPD) presented by the Grammys.

This month she’s off to the United States to curate and perform an official showcase at South by Southwest (SXSW) 2022 in Austin, Texas. She’s been applying to get into SXSW since she was 20. And March also has the release of Hull’s first book, We’ve Got This: Stories by Disabled Parents, an anthology that follows the successful 2018 ABC Radio National series.

Later this year, Hull will release a children’s book called Come Over to My House, co-written with Sally Rippin and illustrated by Daniel Gray-Barnett, and she’s also recording a new album with producer Pip Norman.

Hull, 36, has the neurological condition Charcot-Marie-Tooth. “It affects the way I walk; I fall over,” she says. It also causes muscle and sensation loss, pain and fatigue.

I asked Hull what her disability means for her. “[It] enables me to be part of a community, it’s an identity I’m proud of,” she tells me. “It’s enabled me to see the world in a deeper way, which has made me a more creative person and musician. The challenges come from people’s attitudes and physical barriers.”

When I met Hull in 2017, she was beginning to be more open about her disability. Since she’s spoken about it publicly in her broadcasting, writing and music, her profile has catapulted. We both believe there’s a direct correlation between discovering disability identity and pride in her 30s and her current achievements. She tells me she’s been reflecting a lot on this recently.

“For a really long time, I hid my disability,” she says. “An example of that is arriving at a record label and realising that they were three flights of stairs upstairs. And I didn’t want them to see me get up the stairs, because if there’s no railing alongside the stairs, I can’t get up them. And if there is railing, it takes a long time, and I have to really pull myself up.

“I knew that if they saw me walk up the stairs, they’d know I was disabled. So, I hid it and got somebody else to let me in. And when I got to the top of those stairs, I remember just feeling so exhausted – not only because of the stairs, but because I was emotionally exhausted, like, it’s just so heavy to constantly feel like you have to hide.”

Hull says at the time, the perception that disability was a problem or a deficit meant she was afraid she wouldn’t be accepted. She would say she had “a leg problem” and reflects on how even using that language was damaging. “Fighting my disability was like carrying around a huge heavy weight, like, even heavier than being in physical pain.”

Having children was the catalyst that prompted Hull to be authentic and true to herself. “At the time, it felt like the world was more accepting of diversity,” she says. “I’m definitely seeing the change that I really wish was there when I was growing up, seeing more representation, seeing more disabled musicians being played on the radio, and there’s still so much work to be done.

“I think it was like a strange timing of me coming into myself and accepting myself, coming into my own identity, but also that the world was what it felt like anyhow, that world was starting to shift as well.”

As for many disabled people, the pandemic made the workplace more accessible for Hull, even though at times work, family and her partner’s work–life became a blur. “We’ve been asking for this kind of life for a long time – [the] flexibility [of] working from home arrangements,” she says.

“I know that many workplaces that I’ve been part of, they’re inaccessible. They have stairs, they don’t have an accessible toilet. And that becomes tiring. And so, working from home was really encouraging. I could fit it in around the kids. It fitted around my disability. So when I had a peak in energy I could work then and have more time to rest.”

Hull grew up in Wodonga, and credits Wodonga High School, which had a brilliant music program, for nurturing her creativity. There were airconditioned studios she could use at lunchtime to escape the heat and cold – Hull’s disability makes it hard for her to regulate her temperature – and also to escape bullying.

“I felt really nourished and accepted by the music teacher – she really believed in me as a singer, which was powerful when you’re a young person,” she says. “And at times when I was bullied, and I think just singing in on the piano at lunchtime at school was just such a nice way to express myself and feel all the feelings, really. So it was so incredible to have that space to go to at lunchtime.”

Hull still lives in regional Victoria, in Castlemaine with her partner, Karl, and two children, seven-year-old Isobel and one-year-old Archie. She works in the pockets of time when her children are at school or asleep. She loves the close-knit, creative community in Castlemaine and its great live music venues.

“I do have very incredible memories of living in Melbourne,” she says. “I moved there when I was just turning 18. And I did so many gigs at that time, it was probably the biggest time that I gigged, and they’re very happy memories.”

Hull pitched the radio series We Got This as part of ABC’s regional storyteller scholarship. At the time her daughter was very young and she couldn’t find stories from other disabled parents. She had experienced a lot of ableism from medical professionals when she was pregnant – she was told she shouldn’t be a parent and that the risk of passing on her condition was high.

But she knew her body and her condition, and made an informed decision about starting a family. “I needed to have someone that said, ‘I’ve really done this before, or it’s okay.’ Like it is possible to be a parent or disabled parent. And I tried to find a book like We’ve Got This, and there was nothing out there. And so I applied for the regional storytellers scholarship at the ABC.”

The outcome was an eight-part radio series on ABC’s Life Matters and accompanying articles on the ABC website. Hull’s daughter Isobel featured in one of the episodes – Hull is proud that Isobel is aware and inclusive of disability at such a young age. Contributors to the book include Jacinta Parsons, Kristy Forbes, Graeme Innes, Jessica Smith, Jax Jacki Brown and other prominent voices from the disability community.

“I really hope that maternity health nurses and people in maternity wards, and any doctor or person in the medical field, reads this book,” says Hull. “I think that they will learn a lot. So that’s my real hope – that non-disabled people read it, and that disabled who are parents or are thinking about becoming a parent feel represented.”

Something I admire about Hull is that, knowing she’s a part of a bigger disability rights movement, she takes a lot of care with her work. She makes space for others and strives for inclusion and fair representation. She wants to do the best for the disability community as a whole.

The language around disability is contentious and often debated by non-disabled people. For those of us who are disabled, disability terminology is personal and varied and is tied to our identity. Some of us identify as “disabled”, others identify as “people with disability”, some reclaim slurs such as “crip” and “mad”, and some don’t identify at all.

Hull lost sleep over the title, We’ve Got This: Stories by Disabled Parents. She agonised for weeks over whether “disabled” or “people with disability” should be used. She asked a lot of trusted people for advice.

“I guess the reason that it affected me so much was because I was afraid of the backlash,” she says. “And I think you can at times feel pretty vulnerable when you’re making a stance like that. But I didn’t want to hurt anybody. I feel like by putting our identity first [disabled parents], that it’s like, it’s like a statement. It’s saying, ‘We are disabled, we have got this and we’re proud.’ And so ultimately, I chose that.”

Musician Tania Doko mentored Hull in the APRA Women in Music program. “Eliza allows so many to feel, be heard, seen and included,” Doko says. “Her genuine role-modelling alone contributes to other disabled artists to truly back themselves by releasing their own music and stories. With regards to women storytellers, we have come a long way, but there’s a ways to go when you think the visibility of disabled artists in the Australian music industry is not high. Eliza will make you think and feel all at once through her music and words.”

Caroline Bowditch, chief executive of Arts Access Victoria, who presented Hull with the inaugural AAV Music Victoria award late last year, says Hull is negotiating and leading change every day.

“When I watched Eliza presenting Isol-Aid Accessible All Areas I remember thinking everyone in the music and entertainment industry needs to watch this and absorb it with every pore of their beings. The generosity and artistry Eliza demonstrated in putting the event together was such a great example of disability wisdom and leadership.” 

We’ve Got This: Stories by Disabled Parents is published by Black Inc, a Schwartz company.

This article was first published in the print edition of The Saturday Paper on March 5, 2022 as "Open access".

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Carly Findlay is a Melbourne writer, speaker, appearance activist and arts worker.

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