Eliza Hull named International Day of People with Disability ambassador

Hull has lived with Charcot-Marie-Tooth disease since she was five years old, a condition that causes nerve damage, muscle loss in her hands and feet and affects her hearing and speech.

She said it was a real honour to be asked to be an ambassador for the day which celebrates people with disabilities and the ongoing removal of barriers.

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"Since I've been named an ambassador it's been great to be able to link with different organisations," Hull said.

"On the actual day I'll be in Sydney performing my music as part of Inclusion Festival and also doing some speaking events for people that are celebrating the day."

Hull said her condition was something she tried to hide a lot growing up, but has gradually become more comfortable with.

"For a long time I held on to a lot of ableism I internalised," she said. "I think that came from a lack of representation in the media and on TV.

"Not seeing yourself represented feeds into the belief that disability is a bad thing and something to be feared."

She said deciding to start a family was a big turning point for her, as there was little information about parenting with a disability.

"In the last couple of years since I started my family it is now something I'm really proud of," she said. "That came about from having kids and realising I wanted to model being my authentic self to them."

While having her first child, Hull searched for a book on parenting with a disability but couldn't find anything.

"Anything I did find was often portrayed as tragic to have a parent with a disability, it was almost like children were victimised," she said.

"That wasn't something I was experiencing so I wanted to change that narrative."

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And to help change that narrative, Hull launched a Radio National podcast called We've Got This, which soon became a book featuring the stories of 25 disabled parents from around Australia. The book will be re-released internationally next year.

This year, Hull co-wrote a children's book with Sally Rippin called Come Over To My House, which she said was "a great way to have conversations in the home about disability".

"It's just been a great tool for parents," Hull said.

"A lot of people felt really alone in their decision to parent, especially in the medical space when you go off to see a doctor.

"A lot of the time you face discrimination or stigma when you choose to have children as a person with a disability."

Hull's advocacy in her music and arts career has seen her a recipient of several awards, including the Music Victoria Amplify award, the APRA mentorship for women in music, the National Leadership Award from the Australia Council and Arts Access Australia and the Australian Women In Music Award.

Her music has been featured on ABC programs And Then Something Changed and The Heights, and American television shows Awkward, Teen Wolf and Saving Hope.

She said music for her has always been a form of "escapism", however has now become more of a tool to advocate for change.

"Now as I identify as a musician with disability, I'm trying to shift and change the music industry," she said.

"It's an industry that has a lot of barriers and attitudes that are often quite ableist, but also physical barriers because venues are very inaccessible for musicians."

She has worked with APRA, Music Victoria and the ARIA awards on ways to make the industry more inclusive.

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Somewhere Hull said she'd love to see made more accessible is her hometown of Castlemaine.

"It's definitely the space I'm thinking needs some shaking up and disrupting," she said. "Even on International Day of People With Disability, there's not much to celebrate our achievements.

"I think it's a real missed opportunity, but it is only one day. While it's a a day to celebrate people with disability, we need to look at how we're actioning those changes every day.

"I think I'm starting to see changes but still Castlemaine is quite an inaccessible town."

Hull is an ambassador alongside advocate Akii Ngo, filmmaker Nathan Basha, actress Chloe Hayden, First Nations elder Uncle Wilfred Prince, and travel accessibility advocates Julie and Braeden Jones.

A Bendigo event for International Day of People With Disability will take place on Saturday, December 3 at the library gardens from 11am to 2pm.

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