Olivia wasn't expected to live more than a few days, now she's a movie star

Actor Olivia Hargroder was not expected to live more than a few days after she was born. She's now 27.

She was probably not going to talk. She's a chatterbox.

She was not expected to walk very well. She dances.

In fact, Olivia dances so well that when she was cast in the lead role of feature film Boss Cat as the rhythm-lacking Sonja, it took all Olivia's acting skills to pull it off.

"Once I found out that Sonja's not the best dancer, I found that quite hard to do," Olivia tells Australian Story with a sassy giggle. "Because I'm such a good and amazing dancer myself."

Confidence is not something Olivia lacks and it's a quality her mother, Kerry Read, says has helped Olivia rise above the low expectations many impose on people with Down syndrome.

"Anyone who meets Olivia will know optimism is her key operating system," Kerry says. "She's so optimistic, she's so confident.

"It's very easy when you're constantly put down in life to actually be demotivated. Life as someone with an intellectual impairment is full of those … [who] aren't optimistic about you."

By the time Olivia consulted her school careers counsellor, she'd almost completed her final year at a mainstream school and had become so adept at public speaking that she'd addressed the United Nations (UN) in New York on World Down Syndrome Day.

She told the counsellor her next ambition was to study at the National Institute of Dramatic Arts (NIDA), one of Australia's most prestigious acting schools.

He just laughed, told her NIDA was for "the elite" and suggested she instead work in a bakery, which, Olivia quips, "is definitely very hard when you're gluten-free".

She got into NIDA. For one year, she studied with 12 budding thespians at its Open Young Actor's Studio, before undertaking other acting courses.

Then, in 2021, she started acting with Bus Stop Films, a disability-led organisation that works with about 250 young adults with intellectual disability, autism or Down syndrome to create films and equip them with skills to get jobs in the industry.

"When they asked me to audition for Boss Cat, it was actually an incredible feeling to have because I've never been a lead in a feature before," says Olivia, who lives in Redcliffe, north of Brisbane.

"It was just a dream come true."

Olivia has other dreams. The one she's held the longest is to dance on Broadway in musicals. Her absolute biggest dream, she says, is to be a dancer on tour with her idol, Taylor Swift.

Unachievable? Don't tell Olivia that, says Kerry.

"She does have huge dreams and sometimes," Kerry says, "the most unachievable dreams she actually achieves."

'Incompatible with life'

At her routine 20-week pregnancy scan, Kerry was told her baby had a heart condition that was "apparently incompatible with life".

She was advised "very, very strongly" to have a termination.

But Kerry's desire to hold her third child in her arms for as long as she was granted — "moments, days, whatever" — overruled the experts.

When Olivia was born, Kerry, a 40-something physiotherapist at the time, knew immediately that her daughter had Down syndrome.

"She had a gap between her first and second toes which is so classic of Down syndrome," says Kerry, who had not had scans to detect the chromosomal condition.

"But it didn't matter because every moment was precious and I never really thought that her Down syndrome was a problem. It was just, 'How long was she going to live?'"

Having survived the first few days, it was hoped Olivia would make it to three months before undergoing surgery on the hole in her heart but, at nine weeks, she was deteriorating and whisked into surgery.

She had a 20 per cent chance of survival. "I always say she's a sparky kid and she is determined to hang on," Kerry says. "And hang on she did."

To Olivia, her mum is a "superwoman".

"It wasn't just the doctors and nurses who saved my life," she says. "It was my mum."

Life-changing surgery

Kerry was told Olivia would probably not be able to speak, or her speech would be delayed. So, when Olivia was four months old, Kerry started teaching her, along with her other daughters Emily and Lucy, how to sign.

Through play, she worked on improving Olivia's low muscle tone (which is characteristic of Down syndrome), exposed her to sensory stimulation and ensured Olivia made her own choices.

Says Emily: "Mum never limited her but Mum never forced her to do anything either. I think that's really important too, that it wasn't, 'We're going to defy the odds'. It was just Olivia is who she is."

And Olivia knew she was a dancer. She loved learning routines with her sisters and dancing to music videos.

But her kneecaps were badly misaligned and as she got older, she fell over a lot, injuring herself.

"I used to get a number of fractures," Olivia says, "but I always managed to bounce back. I always do."

By her mid-teens, and still at school, Olivia was desperate to have an operation to fix her knees.

She and Kerry had consulted a number of orthopaedic surgeons when Olivia was younger but the operation could not be done until her growth plates had fused. Surgeons were also concerned about her heart (which required further surgery when she was 18) and the need for intensive rehabilitation, which some doubted a young person with Down syndrome would do.

But Olivia was determined and, at 15, she sat down and wrote a letter to one of the surgeons she'd consulted, Jeremy Bartlett.

It read, in part:

"Dear Dr Bartlett, Can you please help me with these things that I want to do? I really want to stop falling over and I also want to stop breaking bones."

Dr Bartlett says he was moved by the letter and decided to operate on one knee. Olivia was so committed to her rehab and improved so well, her second knee was operated on soon after.

"It changed my life," Olivia says. "I could run, I could jump, I could dance, I can do anything I wanted … I'm so, so grateful because I am just so happy to be where I am right now and with my dancing. It's just an incredible place to be."

A star is born

Dressed in hot pink and purple all the way down to her glittering dancing shoes, Olivia's Boss Cat character Sonja is on board a bus, krumping up a storm.

Krumping, a high-energy street dance, play a big role in the film — used as an outlet for Sonja, who has special needs, to express her anger at the death of her mother and a plan by her grandmother to move her into an assisted-care home.

Genevieve Clay-Smith, the co-founder of Bus Stop Films and writer and director of Boss Cat, beams as she remembers that day of filming and how Olivia "gobbled it up".

"Basically, the brief was 'be a pop star' and own that bus," she says. "And Olivia brought the attitude; she really channelled pop star vibes that day."

Genevieve says the moment she met Olivia she had a "visceral sensation in my gut" that she had found Sonja. After a rigorous audition process, she knew she was right.

Apart from her talent, Genevieve saya, Olivia is curious, asks insightful questions about her character and listens well to direction.

"I love being in front of the camera so much," Olivia says. "It just makes my whole world look just incredible … I love the freedom."

Before filming, the duo held weekly teleconferences to run through the script and to find ways to channel the types and depth of emotions required for a scene.

To improve her range, Olivia created a coloured mood chart as a way to indicate that a scene required rage, joy or sadness, or a combination of those. It also helped protect her from being consumed by Sonja's emotions.

"Olivia has this gift of being able to feel deeply and to really invest and find her emotional truth," Genevieve says. "The chart … helped her harness the emotions rather than letting the emotions take over her."

Genevieve's hope is that Olivia will be cast in future roles because she's a great actress, not a great actress with Down syndrome.

"I hope that she gets to do more amazing performances that draw in audiences, captivate people, and that satisfy her and fulfil her as an actress," she says.

A home of her own

Olivia reckons she and Sonja are quite different but there are similarities. They both have a strong group of friends and dream of living independently.

"My dream is to hopefully live with my boyfriend one day," Olivia says. "It's always been my dream for the longest time."

She met her "handsome, gorgeous" boyfriend, Jarred, at Bus Stop Films about a year ago, and he was there to see Olivia walk the red carpet in a stunning pink gown at the movie's premiere at the Sydney Film Festival. It is set for general release on December 3, the International Day of People with a Disability.

Olivia's mother Kerry sees no reason her daughter's dream of living away from home cannot be realised.

"She manages perfectly well when I'm not here and will perfectly well manage her own household," she says.

"I think it's important that … there's not just an assumption that all people with Down syndrome will be forever someone's child. Her thoughts and her feelings are just the same as everyone else's and she's perfectly capable of taking agency over her own life."

Olivia's sister Lucy says Kerry has plans in place for when that time arrives, with Olivia needing some support "so she can be the most fulfilled that she can be".

"Olivia goes around smashing all your boxes," Lucy says. "She's just like, 'I don't fit in that box'. Smash!

"And she just keeps doing that. And as her sister, you have no choice but to go on that journey with her. And it makes you a bigger person. And it makes you a better person. And it makes you see the world differently."

For now, Olivia is happy to keep dancing, acting, working at a major supermarket, going to coffee with Jarred and zipping around in her fully enclosed mobile scooter, dubbed the Popemobile.

Throughout her life, she's met people who see disability before they see the person, but Olivia likes to see the best in people and simply asks that others do too.

"I would say, 'Give people with Down syndrome a red hot go'," Olivia says. "They always bring something special to the table that you might not know.

"I would encourage you to take that special person into your heart … because you'll never know what they'll surprise you with."

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