Jimmy Barnes’ daughter Elly-May opens up about cerebral palsy
With the support of father Jimmy, Elly-May Barnes is addressing her experience with disability more openly.
Jimmy Barnes spent many years trying to distract his daughter Elly-May from her cerebral palsy. “We wanted to make her feel like she was absolutely the same as everyone else. She always struggled, but we made it like it wasn’t a big deal,” says the Aussie rock star, from his home in New South Wales’ Southern Highlands.
“But it is a big deal, it’s a huge deal,” he adds.
Sitting next to her father on the Zoom call, Elly-May nods her head. The youngest of the Barnes children, she turned 32 in May. She has been living with cerebral palsy her entire life; born 14-weeks premature, Elly-May suffered a brain haemorrhage that severely affected her physical mobility, particularly on the right side of the body.
Cerebral palsy affects 40,000 Australians. The most common physical disability in children, in Australia a child is born with cerebral palsy every 20 hours.
The Barnes’ have always been open about Elly-May’s struggle — a musician in her own right, Elly-May performs cabaret and will often sing in her father’s band. She appears on Flesh And Blood, Jimmy’s most recent studio album, alongside brother Jackie, in a poignant song titled ‘I move slow’.
But it wasn’t until recently that Elly-May decided to take a more active stance in the cerebral palsy community, and use her platform as a musician and member of the Barnes clan to push for greater awareness around the disability.
“I’m new to the world of activism, as far as cerebral palsy goes,” she says. “I’ve always been an ambassador, I’ve been there to speak about it. But to actually get to the deeper issues and the systemic change that needs to happen is something I’m really interested in now. It’s something I can use my platform for.”
Throughout the month of September, Elly-May and her family have been supporting the STEPtember initiative, the Cerebral Palsy Alliance’s flagship virtual fundraiser which encourages participants to walk 10,000 steps a day. Each dollar raised goes towards funding research and services for people living with the physical disability.
It was the combination of two major life milestones that motivated Elly-May to be more open about her experience living with cerebral palsy. The first was giving birth to her son Dylan, who is about to celebrate his seventh birthday.
“Before that… I didn’t necessarily care so much about looking after myself for the long term. I was just like, ‘oh well, I’ll push through this and do this, this and this’,” says Elly-May. “Since I’ve had my son, I’ve had to try to do everything correctly and look after my mobility so I can be a better mother, and do things with him.
“Dylan changed my life. He’s the love of my life. It was very difficult on my body, but I think that emotionally, I’m a lot stronger than I was before.”
“Elly-May tends to push herself too hard,” says Jimmy, who has been chiming in and out politely throughout our conversation, with a chuckle. “I wonder where I get that from?!” she whips back with a laugh.
Another conduit for Elly-May speaking out was reaching adulthood. While cerebral palsy is the most common physical disability in Australian children, it‘s also a lifelong condition with no cure. And while presently there are services set up to provide young patients with multidisciplinary support, once you hit a certain age and those services are no longer available to you, aggregating care becomes more difficult.
“Suddenly you’re out in the world and you’re having to find pain management, physiotherapy, someone who makes casts… they’re all separate, they’re not in the one hub anymore,” explains Jimmy. “As an adult, suddenly, not only are you struggling with mobility, but you’re struggling with trying to find all the right people to do the things you need.”
“Adults with cerebral palsy just disappear,” adds Elly-May. “And it breaks my heart to think of that.”
“I think it’s really important we all reach out and tell our stories. Because there’s someone out there who will say ‘oh, this is me, this is what I need to do.’ We need to all pick up information from each other,” offers Jimmy.
This year’s STEPtember campaign has already raised over $10 million for the cause, and the Barnes’ are keen to keep the momentum up by spreading awareness, not only among the general public but the music industry, too, where they say venues are still being built without wheelchair access.
Elly-May, meanwhile, is itching to get back on stage and perform her cabaret show, which is interwoven with inspiring, and oftentimes hilarious anecdotes about her disability.
Watching on from the wings will be a proud father. “Ellie is tackling these huge issues with such poise, and a sense of humour, and sensitivity is really important. Too often, I’ll be talking with people and I’ll say, ‘my daughter has cerebral palsy’. And they say, ‘oh, that must be terrible for you’.”
“I’m like, no, it’s not terrible for me. She’s an incredible girl and I’m so blessed to have her in my life.”