How do you fit decades of an incredible life story into a five-minute documentary?
That was the challenge posed to Australian filmmaker Thibault Upton, when he took on chronicling the life of Stuart Iredale. Born with Fragile X, a genetic condition characterised by intellectual and physical disability, learning difficulties, and aspects of autism, Stuart was neglected and abused by a system who understood little of his condition for most of his life, until his eventual diagnosis at the age of 60. While much more is known about Fragile X today and Stuart now receives the care he so desperately needed for many decades, his story is equal parts tragic and heartwarming, told through the eyes of his sister Robyn, and narrated by Australian actress Cate Blanchett. Coming off a recent win for Best Director Documentary Short at DOC L.A., I caught up with Thibault to find out more about the making of his moving new film.
How did you first come into contact with Stuart?
Five years ago I did some videography for a charity, the Fragile X Association. I first met Robyn Iredale (Stuart’s sister) when interviewing her son Marty on Scotland Island for some content that would eventually inspire Marty’s feature in the ABC’s Employable Me series. The Iredale family and I got along so well; I stayed for dinner after the shoot. A few years later, I was sitting in my friend’s kitchen talking to his mum Jude, who was previously a board member of the Fragile X Association. Jude is a highly intelligent and eccentric Kiwi; usually we talk about love or blood types, but on that day she started to tell me about a few families she knew that were affected by Fragile X. That’s when I first heard Stuart’s story, and eventually it was arranged that I would meet Stuart at his new group home with Achieve Australia. From there, we drove to music therapy together and really just hung out. We were all curious by how Stuart would react to me and being filmed. He absolutely loved it.
I’m sure there’s a lot of people out there who have never even heard of Fragile X. What did you learn about the condition throughout the process of making this film?
I had been involved with Fragile X prior to Stuart X, but I learnt a lot though through making the film. Fragile X is the leading cause of inherited intellectual disability, incurable and requires life long support. The severity of its effects vary enormously. Testing is available, even to find out if you are a carrier. It’s also inspiring to see just how far our understanding of mental health has come in the past few decades—Stuart is now being weened off antipsychotic drugs that have damaged him and is properly cared for, unlike past carers who were abusive and misinformed on how to deal with someone who has Fragile X. I’m really excited by this project and the response its received… the more conversations we can have about these issues, the more things will keep improving.
The scene of Stuart dancing with his sister towards the end of the film is really touching. Was that particular scene something you had always planned, or did it evolve naturally?
Stuart doesn’t act and doesn’t talk in a conventional sense, and I would never have asked him to do something he didn’t want to. I always knew his involvement would be a single visual scene, and a third body would tell his story, re-enacting his history. Like many people with a disability, he loves music. Robyn sent me a biography of Stuart’s life, which helped me to realise that for him, music was a recurring light in a sea of darkness. The day I went to music therapy with him, it all became very clear his moment in the film had to be dance.
What was one of the most challenging aspects of the film for you?
Maintaining the integrity of Stuart’s story was by far the most challenging aspect. After talking to Robyn over the phone, in person, and then reading his biography, my approach was to film an interview with Robyn. From that interview, we formed a first-version and after that, it was just add, subtract and cross-check with Robyn. The script is some form of factual poetry.
What did Stuart think of the film?
This is what Wendy Bruce from the Fragile X Association told me happened after Stuart first watched the film: ‘Stuart watched the film with his family on Robyn’s birthday a couple of months ago. Towards the end when he saw himself on the screen, he pointed and called “Stuart! Me!” and then, “Film!” He was happy and smiling, and immediately after the film ended, musicians played Zorba the Greek, and Stuart and Robyn danced in the centre of the room, followed by the rest of their family. The dancing continued for the remainder of the evening… very few dry eyes in the house!’
Are there any other films in the pipeline for you?
I have just finished a short documentary on bimolecular engineer and surfer, Max, who develops biosensors aimed at minimising food waste. As an independent filmmaker—a generous term for most of my rent-paying work—when you do get a reasonable brief, chances are you can turn it into something special. I’d like to do more work for social good, they seem to be the projects that get the most out of me.