“He Totally Saved My Life”: All About Women Panellist Elly-May Barnes on Parenting With a Disability

Elly-May Barnes is talking to Broadsheet over Zoom from her home in NSW’s Southern Highlands when her dog, a white miniature schnauzer named Dolly Parton, interrupts.

“She barks at her own reflection,” Barnes says, laughing. “Which I call Jolene.”

Barnes’s sense of humour is one of the first things you notice about her. She has a wicked laugh, and her performances – she is a cabaret singer and a self-described “weird drag queen” – are peppered with humorous anecdotes and wry asides. She is the youngest daughter of Jane and Jimmy Barnes, and, like her parents, she is a musical force. Barnes is also a single mum living with cerebral palsy.

Barnes was born 14 weeks premature and suffered a brain haemorrhage that impacted her mobility. She was so small when she was born – she weighed 750 grams –that her parents used to bath her in a kidney tray.

“I spent years trying to ignore my disability as a kind of coping mechanism,” she says. But when she found out that she was pregnant at the age of 25, everything changed.

“He totally saved my life,” she says of her son, Dylan, who is seven. “Before I had Dylan, I was a lot more reckless with my health and my body. He taught me to be nicer to myself.”

This weekend, Barnes will appear in All About Women – the annual Sydney Opera House festival marking International Women’s Day – panel We’ve Got This, which digs into the experience of parenting with a disability. The panel coincides with the release of an anthology of the same name , edited by writer and musician Eliza Hull, featuring 25 parents who identify as deaf, disabled or chronically ill.

“Reading that these other parents have such similar joys and struggles makes me feel like I’m not as insane or alone as I thought,” Barnes tells Broadsheet.

The help of her “village” is invaluable; she lives across the road from her parents and has a large support network of extended family. And while she spent much of 2021 in recovery from multiple operations on her legs, that didn’t stop her from getting back up on stage.

“I was just out of hospital for my last two shows,” she says. “I had to bedazzle my walking frame.”

She says that using her platform to draw attention to the plight of artists and parents living with a disability has become increasingly important since becoming a mother.

“You don’t see many disabled artists out there,” she says. “Something in me clicked and I realised how important it was for people, Dylan included, to see people with a disability doing all kinds of things.

“I want to show younger kids that you can still be active in the community even though the world isn't necessarily built for you. You can still find your way, and find the humour in it.”

Elly-May Barnes will appear in We’ve Got This, a panel discussion on the challenging and rewarding highs and lows of parenting with a disability, at the Sydney Opera House’s All About Women festival on March 13. Tickets are also available to live-stream the panel.

sydneyoperahouse.com