My younger sister’s name, Karuka, means “heavenly piece of art” in Sanskrit. For as long as I can remember, she has always been creating something. As a toddler, she used her hands to press imprints of paint on paper and mould castles of sand. Now, she uses those same hands to hold a camera and take photographs of the world around her. All this she does without making a sound. Karuka is profoundly deaf with Down syndrome and non-verbal. But those limitations have paved the way for expressing her thoughts through her art. Through the symbols she draws and the photos she takes on her phone, my family and I can see what matters to her and what she values as important.
Although I am verbal and able to speak, as a 21-year-old in a family of carers, I often find myself silenced – albeit in a vastly different way. Since I was little, I’ve always talked a lot, often to the annoyance of others, including my parents. Despite this, finding a platform for my voice as a young carer is extremely difficult. This is because of the lack of information and interest in carers in the mainstream media. As such, we can become – even from our friends, who don’t always understand the issues we face.
Karuka painting at the age of four. Source: Supplied
There are (under the age of 25) in Australia. Many of us feel ignored as we struggle to balance our education with the physical responsibilities of looking after someone, and being forced to mature much quicker than other young people.
One cold Monday afternoon, I received a strange text from my mum. She’d taken a photo of an ad inside a train carriage: “Entries open for the Focus on Ability Short Film Festival.” Mum sent another text: “What do you think? Make a film about Karuka?”
I had a sudden urge to make a film about Karuka’s journey of using art to express herself. Karuka’s art and music therapists taught me that , cultivating a different space for free and creative expression that goes beyond words. It teaches neuro and physically diverse individuals to build self-confidence by communicating through other senses.
As she grew older, Karuka began using photography to express her thoughts, winning the People’s Choice Award at the Wisdom in Focus photography exhibition run by our local council.
As a carer, I, too, wanted to explore a new form of expression: film. I used photos of Karuka in her earliest days wrapped in blankets, wearing tiny hearing aids. Then, when she was slightly older and starting school, painting on canvases much bigger than she was – capturing the brilliant colours of the sky, and starting to paint the faces of those she loves. I also included clips of my sister learning and using Auslan, which became a vital form of expression for her. I interviewed my father, mother and Karuka’s support worker, Millie, about Karuka’s progress and her art making. Eventually, the film, A Heavenly Piece of Art, became an exploration of our intersections and expressions as carers. We were delighted when it was named a finalist in the Focus on Ability Film Festival.
Karuka's prize-winning photograph of her vision-impaired teacher and her guide dog. Source: Supplied
I was nervous at the screening held last year in Sydney. Sitting beside my parents in the plush red cinema chairs, I was relieved when each film was met with cheers and enthusiastic applause. Seeing my film on the big screen and hearing the clapping, laughs and exclamations of joy throughout was incredible. I finally felt heard.
Some of the other films – particularly the international entries – also touched on the additional stress experienced by families of colour who are carers, due to and the general lack of knowledge about available services, as well as casual and institutional racism. To me, these films were like Karuka’s photographs. As my father said in the film, “We live in a society where we are constantly trying to hide or silence the things that we don’t like to see… I see Karuka’s photographs as a disruption to this.”
My film was lucky enough to win an award for receiving the most votes for an Australian entrant. Yet the appreciation I gained for communicating non-verbally with my sister in the process of making the film was better than any award. Now, when Karuka brings her art home from school, I spend more time taking in her composition and working out what she is trying to say. When she begins to get upset because she cannot express her feelings, I calm her down and pass her a coloured pencil and paper, encouraging her to use a different medium to explain.
Writer and filmmaker Satara, Karuka and support worker Millie. Source: Supplied
One morning, sitting in on one of Karuka’s music therapy sessions, I witnessed just how cross she sometimes becomes. She sat with her arms folded, lips tightly shut and gaze averted, not adhering to any of the gentle instructions given by her therapist, Catherine. From her infuriated sighs, restless movements and refusal to engage in any kind of eye contact, it was clear that her small body was about to explode with pent-up emotion. Catherine had an idea and began to play a song that was fast-paced and aggressive. Slowly but surely, Karuka took up a tambourine and started to hit it loudly. She shook it with the fury she had inside her and started singing, eyes tightly shut. I watched in wonder and marvelled at how Catherine had transformed Karuka’s stubbornness into a piece of music so quicky, helping her release what she could not express in words.
I realised that communication is all about meeting the other person halfway
Karuka has taught me that using words is not always the best way to be heard. That morning, as she continued her musical outburst, I initially just shook my head, sat back and watched. But after a few minutes, I picked up a tambourine lying in front of me and began to shake it alongside her. I realised that communication is all about meeting the other person halfway. All her life, the burden has fallen on Karuka to meet people more than halfway, accommodating those who don’t make an effort to understand her. In that moment, I decided to spend the rest of my life advocating for non-verbal individuals like my younger sister, making sure the rest of the world one day learns to listen and meet them halfway.
Satara Uthayakumaran is a Youth Ambassador for Anti-Slavery Australia and sits on the executive board of the Domestic Violence Crisis Service. She has written for the ABC, the ACT Human Rights Commission, the Sydney Morning Herald, Diversity Arts Australia and Meanjin. Readers can watch A Heavenly Piece of Art
