‘It can be incredibly isolating’: Cate Campbell and Susie O’Neill speak up about difficult issue
Brisbane swimmers Susie O’Neill and Cate Campbell have united in support of an important issue close to their heart.
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Helena McIlwain is still changing lives, still bringing people together and still making a difference to young Queenslanders with disabilities.
Almost four years after the much-loved Brisbane teenager died at just 19 in October, 2019, from a pulmonary embolism, Helena’s legacy lives on in myriad ways – including the House being built in her name.
Helena’s House will be a five-bedroom, fully accessible, permanent home for Best Life, a Queensland-grown organisation that provides safe, supported short stays for small groups of children and young adults living with a disability. Perhaps more importantly, it also provides mountains of fun. Best Life provides a place where special-needs children and teenagers can be just that – teenagers. It’s a place where they can hang out, watch movies, have sleepovers – all in a no-parent zone, and what teenager doesn’t love that?
But beneath the fun, it’s also a place where life skills are taught – how to wash dishes, make beds, cook dinner, share domestic duties, with the teens who attend gradually increasing the length of their stays on their way to achieving the ultimate goal of Best Life graduates – independent living.
This is Best Lifes’ lauded House Mates program, and it’s one Helena was deeply involved in, the-then occupational therapy student and Best Life staff member an important part of the pilot program.
Best Life’s CEO, Kath Coory says Helena was “brimming with enthusiasm and ideas” for what should be included in Best Life’s future permanent home.
“Helena was so loved by the kids and teens at Best Life, and she loved them in return,” Coory says.
“Because she worked so much with them, and was very hands-on, she knew exactly what sort of things we should incorporate into the design.”
In 2018, when Helena was dreaming big about what a home for kids with disabilities looked like, it was just that – a dream. But fast forward six years, and it’s a reality, with $500,000 raised to purchase a block of land on Brisbane’s southside, the blueprint for the house completed (with many of Helena’s ideas incorporated) and its name voted on unanimously by Best Life staff, teens and supporters – Helena’s House.
Currently the organisation rents a house for their teen guests, and Coory says the completion of the home later this year, will be “life changing”.
But it’s a project that still needs some major financial support to complete, and one that has some heavy hitters on its team, with world champion swimmers Susie O’Neill and Cate Campbell both putting their hands up to help raise funds.
For O’Neill, 50, former Olympic butterfly champion, and current Masters champion (O’Neill recently got back in the pool for a Masters swimming trial and promptly broke the world record) it was meeting Helena’s mother Fiona McIlwain a few years ago that made her, she says, “want to do my bit”.
“My daughter Alix and Fiona’s younger daughter Sophia were at high school together, and through that connection I heard about Helena,” O’Neill says. “I reached out to Fiona, and when she told me about Best Life, I wanted to get involved. I went out to visit them and I just really enjoyed the experience.
“There were some teen girls there that day and they were having a blast. I just loved it, and think it’s such a brilliant concept,” O’Neill smiles.
“And you know, I get it completely, all teenagers don’t want to be around their parents – how daggy – and kids with special needs and disabilities are no different.”
O’Neill says she also loves the fact that Best Life gives those parents a rest too.
“I can only imagine what it must be like for parents of teens who need care to know that they are somewhere really safe, really secure and where they are really loved. I’m just so impressed with this organisation. I’ve seen first hand how it runs, and it runs beautifully. Seeing the joy on those teen girls’ faces was really something special.”
For Campbell, growing up with a younger brother with disabilities, Hamish, now 24, means she knows how life-changing a place like Best Life is for children and teens with disabilities, and for their families.
“Hamish has cerebral palsy and unfortunately because his level of functioning is quite low, Best Life is not the place for him,” Campbell says.
“Hamish can’t talk, or walk, or feed himself, or sit by himself but he is, I’d like to say, a complete human being who brings joy every day to my family.
“For me, I have seen, however, the loneliness of someone with a disability and for their carers. It can be incredibly isolating for everyone involved. Loneliness is quite contagious, and for carers they have so much love to give to the person they are caring for, it’s extremely hard for them to let go and allow themselves to have time off. You want to make sure they are in good, safe hands, and I’ve seen what Best Life provides and it’s exactly that. I think it’s a life saver.”
Campbell says one of the things she loves most about Best Life is the way it allows its teens to connect with their peers, and to have meaningful integration into real-life activities like shopping or going to the movies.
“I love the way it brings joy to everyone. I love how it allows other people to see how these kids are, how much fun they are, how they love each other. There’s a million different ways these kids bring joy to the world – Hamish taught me that too.”
Campbell, 31, who spent her early years in Africa, says kids like those who attend Best Life and her brother, have much to contribute to the world, including the values of patience, understanding and acceptance.
“Hamish was born in Africa, we moved here when I was nine, so Hamish would have been just under three then. But he spent his early years in Africa and my mum took him to a kids’ group, and the other mothers could not believe this woman had a child with a disability and was clearly loving him so much and so proudly.
“They had been taught that because they had a child with a disability they had been cursed, that they had done something wrong, but seeing Mum with Hamish changed everything.
“There’s a million different ways children and teens with disabilities can change us, and I really love how Best Life encourages that connection between all of us.”
It’s also a connection that has brought the two swimmers together, their shared patronage of Best Life allowing them some time to reflect on their own relationship, with Campbell revealing that after her devastating results at the 2016 Rio Olympics, O’Neill – a childhood hero of hers – picked up the phone. Campbell had gone into the 100m and 50m freestyle events as the red-hot favourite, but touched the wall in sixth and fifth place respectively, later describing her 100m result as “one of the greatest chokes in Olympic history”.
O’Neill, universally known as Madam Butterfly, who collected a record eight Olympic medal haul during her career, reached out.
“I can remember watching the 2000 Olympics – we were still in Africa – and watching Susie’s absolute joy on the pool deck. She got out of the pool and did a little dance, and that just really stuck with me, that she was just really enjoying the moment, allowing herself that joy. So when I moved to Queensland and got to share a state with her, I was pretty happy, and later when I went through a hard period after those Olympics, she rang me and said ‘Come on, let’s catch up for a coffee.’
“I was not sure if I wanted to keep swimming, and I remember she was just really kind and gentle, firstly advising me not to make any rash decisions, and then she told me to think of life like a barbecue plate.”
Cate smiles widely.
“She said if right now swimming turns on the entire plate, then maybe have a look at turning on a few others, like switching on the plates for family, for careers and hobbies. It was a really beautiful way to look at it, and a really beautiful way to let me know that with or without swimming you can still have a life of purpose and joy, and you can switch those plates on and off as you need them.”
The swimmers will unite again at Best Life’s major fundraiser this month, Starry Starry Night. They will be joined by Queenslander of the Year, Dr Dinesh Palipana, and the Lady Mayoress Nina Schrinner, with Coory explaining the event will help raise money to build the house Helena McIlwain dreamt of.
I’ll also be there on the night, interviewing Palipana and Campbell on stage, because I’m also a big fan of Best Life, and because two years ago I met Helena’s family and wrote her story for this magazine.
Two years ago, this is what I wrote:
How do we measure a life? Is it in the years we walk this Earth, or what we do en route? Is it in the seasons that pass us by, or in our delight in each one that passes?
If we measure life in years, then Helena McIlwain’s was all too short. But if we measure it in how the young occupational therapy student, disability worker, music composer, water polo player, Greek food lover, tuba player, daughter, sister, mentor, and friend spent hers, then it becomes a far longer equation.
Helena McIlwain is still changing lives, still bringing people together, and still making a difference for young people with disabilities.
This month, two of the young people she once worked with at Best Life graduated from the House Mates program, and moved in together.
Kath Coory says this is the result Best Life is striving for, its “ultimate” goal.
“These two young men, Andy and Cael; Andy has autism and intellectual impairment, Cael is completely non-verbal and has intellectual impairment, are now living by themselves with support. This shows this program works. These young men started out staying at Best Life for a night, then a week, spending lots of time with each other over a period of nine years, and now they really are living their Best Life.”
Helena McIlwain would be absolutely delighted.
To donate to Helena’s House, go to bestlifefoundation.com.au.
For tickets to Starry Starry Night, Conversations and Cocktails at the Brisbane Convention and Entertainment Centre on August 19, book at trybooking.com
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