Julia Hales lives with Down syndrome and is hosting a documentary that raises questions about her very existence. Here’s why.


“I want everyone to know that people with Down syndrome are capable of living in the world and reaching their goals. I want their voices to be heard and to make the world a better place for them.” — Actor Julia HalesJulia Hales is a passionate person, I saw that the moment I met her.She’s a Perth-based actor who co-wrote the award-winning play You Know We Belong Together, which featured at the Perth FestivalI heard about Julia through theatre director Chris Kohn, who was working with her to develop a play called Screens looking at prenatal screening.It coincided with the Federal Government considering changes to prenatal screening to include a DNA blood test on the Medicare benefits scheme.This non-invasive prenatal test makes it easier to detect Down syndrome.It’s currently offered privately and costs extra but this proposal would make it widely available and more affordable.What would that mean for pregnant women and for people living with Down syndrome?I knew there were some interesting questions to explore in a story for the ABC.And I thought who better to tell it than someone living with Down syndrome? Julia Hales and producer Kim Akhurst.(ABC TV)Confronting questionsSo, I reached out to Julia Hales to see if she would be interested in collaborating and presenting a program on this topic.I first contacted her producer, Simone Flavelle, for a chat.Simone and Julia have worked together for 25 years, with Simone closely supporting and mentoring Julia as an actor since she was 16.This would be Julia’s first television presenting role and she would be the first ABC TV host living with Down syndrome.Julia was keen to dive into the topic of prenatal testing.She told me she wanted to speak with a doctor and a woman who’d terminated a foetus with Down syndrome.She wanted to know how doctors provide pregnant women with the necessary information about having a child with Down syndrome “without scaring mothers and pressuring them to terminate”.I agreed these would be important interviews, but I did worry about how would Julia cope with material that called into question her very existence. The documentary canvases a range of views on prenatal testing, including women who decided to have a termination and families raising children living with Down syndrome.(ABC TV)Julia had worked in this space before and was familiar with the institutionalisation of people with Down syndrome that has occurred in Australia.As recently as the 1980s, parents of a baby born with Down syndrome were often encouraged to relinquish their child to state care.It was often said to be for the sake of the child and the greater good of the family.”I want to get rid of the fear around having a child with Down syndrome, to make sure that this [institutionalisation] never happens again,” she told me.The pain of terminationWe know that in Australia, over 90 per cent of pregnancies that have a chromosomal abnormality detected end in termination, so we needed to talk to someone about their experience.We had a great response from our social media call-out.Families all over Australia came forward with their stories of prenatal screening and three brave women shared their medical termination stories.Working from Perth because of COVID-19 restrictions, Julia remotely interviewed one of those women, Julie, in Adelaide about her experience, while I watched from Sydney.I was worried it would be hard for them to make a connection since they couldn’t be in the same room but both women were incredibly open and respectful of one another.Julie, who’d decided on a termination, told us she wants women to know they have a choice.”They shouldn’t feel ashamed or embarrassed by whatever decision they make,” she says.”They shouldn’t let other people influence their decision — you’ve just got to make the right choices for yourself and your family.”After the interview, Julia was firm in her view.”If I had a baby with Down syndrome growing inside me I would find out as much as possible about the disability, I would talk to families who have experience and ask a lot of questions,” she said.”Maybe other people have different opinions on this, they could be worried that a baby with Down syndrome would not be good for their family.”They might be scared of medical problems, or that the baby will learn differently and will be harder to raise.”But it’s their body, and their choice, and I respect that.”My main concern was to get the balance right.Not make it a contest of rights: women’s rights versus the rights of people with a disability or the rights of the unborn child.We did extensive research and spoke to a wide range of people about their experiences.It was a genuine quest for openness, seeking out accurate information and meaningful conversation.Challenges of making the program during a pandemic Julia Hales interviews her father Peter.(ABC TV)There were some significant technical and production challenges in making this documentary.Initially, I travelled to Perth to spend a few days filming with Julia.I drafted questions for Julia and her team to workshop, she added her own and adapted them to her voice.She was great on location, putting the contributors at ease and responding honestly in interviews.When we’d finished interviewing obstetrician Professor Steve Robson, he said he felt like he’d been grilled by Leigh Sales!Julia reflected: “Some questions are hard to ask, and you might not always agree with the answers — but it is important to respect people’s own opinions”.Julia travelled to Sydney for a block of filming.In the middle of the shoot, she made a huge announcement — her play had been invited to the Edinburgh International Festival.Then coronavirus hit and her play’s tour was cancelled and so was the rest of our shoot. During coronavirus restrictions Akhurst directed Julia Hales via video conferencing technology.(ABC TV)Julia was stuck in Perth and me in Sydney.I was worried we wouldn’t be able to finish the program but Perth-based producer Celia Tait, who’d worked with Julia before, was happy to jump on board.So, once restrictions lifted, they filmed together in Perth, looping me in via video call from home.I could talk to Julia and direct the crew from the comfort of my home office.The other coronavirus complication was remote editing, with editor Philippa Byers working from her home on Sydney’s northern beaches and me in the inner west.We spent hours on Microsoft Teams viewing cuts, solidifying the structure and crafting the story.It was a big job, balancing Julia’s backstory, the personal stories of contributors with the bigger picture ethical questions.The final piece of the puzzle was the voice-over which Julia recorded from a COVID-safe sound recording booth in ABC Perth, with me listening in from Sydney.Reading the lines of narration, Julia’s acting skills kicked into gear.She followed my direction, giving me lots of different styles of read to choose for the edit.By the end of the production process I think we all recognised the importance of creating an opportunity to give Julia a platform.For many people living with a disability, opportunity is all they need.And for Julia, this could be the start of her next career move.”I’ve been involved in theatre all my life, now I just want to do TV – more hosting [or] a late-night talk show, [interviewing] celebrities and other people living with disabilities – so the whole world is watching [and there is] a bigger audience.”The Upside of Downs goes to air at 9.30pm, Tuesday, October 20 on ABC TV and iview. October is Down Syndrome Awareness Month.

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