Jacinta Parsons is a broadcaster, radio maker, writer, and public speaker. She currently hosts Afternoons on ABC Melbourne delivering a popular mix of art, culture and ideas. She began her radio-life in community radio over a decade ago but her peak Melbourne moment came earlier, when she worked as a tram conductor (proudly wearing one of the last of the Connie’s green uniforms). Jacinta has lived with Crohn’s disease for over 20 years and is an ambassador for the Crohn’s and Colitis Association. She is also an active member of the arts and music community and is a board member for Melbourne disability theatre company, Rollercoaster. ‘Unseen’ is Jacinta’s first book.
“According to the Australian Institute of Health and Welfare, approximately 50 per cent of the Australian population reports having a chronic illness. The term ‘chronic illness’ encompasses illnesses as varied as asthma and cancer, Alzheimer’s disease and diabetes, chronic fatigue syndrome, HIV/AIDS and a broad range of mental health conditions. Sometimes they have visible symptoms; often they don’t … Illness is like a natural disaster. In that way, it is simple, because you have little choice but to accept it. The only choice left to you is how to respond, and disaster becomes an opportunity.”
Jacinta is interviewed here by Jessica Obersby, an emerging writer who believes in the power of stories to change people’s lives. Jessica’s work in progress is YA speculative fiction that has a protagonist with mental illness. Jessica is a graduate of the RMIT Professional Writing and Editing degree and in 2019 was a recipient of a Writers Victoria Write-ability Fellowship, funded by the Grace Marion Wilson Trust. The Write-ability program supports writers with disability wanting to develop their skills and writing careers.
Q: You say your experience with chronic illness brought some of the greatest and worst moments of your life, can you tell us about one? Is there anything you wish you’d done differently throughout the whole process, from the first creeping but ignored inklings that you were sick, up to today?
A: One of the promises I’ve made to myself, is that I will do my best to accept and embrace the experience that I’ve had. It’s hard sometimes at 3am to remember that, as you lie awake wondering what might have been, but I try not to look back and think of my experience through that frame. I really believe that it’s important to acknowledge that while there are aspects of illness management that the sick person has control of, much of the experience is out of our hands. One of the issues that we face is a strong narrative that illness is somehow the fault of the ill. Are you eating the right things? Are you doing everything you can to be better? Should you have made better decisions? More important than looking back on the ill experience to work out how you might have seen a doctor earlier or taken different medication – is the understanding that this, the messiness of it all, is a central aspect of the experience. It’s rarely a simple process. Rarely a set of obvious decisions or simple answers. Rarely a clear path that you can take to become well. Instead, we’re often left to learn how to live in the wake of the uncertainty and the messiness.
One of the experiences that I recount in ‘Unseen’ was a perfect measure of being one of the greatest but one of the hardest experiences of my life. Giving birth to my first child, while unwell and with an ileostomy bag was enormously challenging but one of the most profoundly joyful of my life.
Q: Initially, it was difficult talking about your pain because there was no language, and you worried that perhaps that was because it didn’t really exist. Other authors have talked of having mixed feelings about their diagnosis, some relief, but also a whole lot of other things. Did you find this as well?
A: Yes, I definitely found myself with mixed feelings. I think this is one of the more crucial understandings of the experience of chronic illness - that illness isn’t often ever just ‘one’ thing. The experience of illness is often multi-faceted as it impacts parts of our lives in ways that range in extent and depth. While getting a diagnosis can initially be a huge relief, it then becomes about the ‘how’ of living with that illness. And illness can often mutate throughout your life, it’s often not a static experience but one that will change its form and its requirements for you to deal with it.
Q: Since COVID-19 shutdowns, non-disabled people have been anxious for their lives to ‘get back to normal’, but you recognise that for disabled and chronically ill people the isolation often is normal for us. If we look at this pandemic as a chance for people to learn and for governments to improve services, what do you hope might ultimately come out of this?
A: I really hope that the pandemic has provided for us an opportunity to grow our empathy muscle and to understand that so many people in our society are living in challenging circumstances day in day out. And while this pandemic will one day find an end, people with disability and chronic illness face living with employment instability, housing insecurity and the psychological impacts of chronic conditions for the rest of their lives.
I especially hope that our workplaces can see the potential to understand that the workforce doesn’t need to fit into the traditional model – where an employee delivers a task at a certain time and in a certain setting. If we can learn anything from this time, I hope that it is that we can open up opportunities to a broad and willing cohort of people if we challenge outdated workplace modes.
Q: You acknowledge that everyone’s experience of disability or chronic illness is different, but also that we can find some comfort in shared stories. Do you think it’s important for more of these own-voices stories to be published, especially BIPOC and LGBTIQ+ stories, so that the diversity in this community can be better understood?
A: What we need now more than ever is a diversity of voices telling their stories. From the personal, we understand the universal, but it only works when that personal is drawn from the rich tapestry of experiences.
You can read an extract from ‘Unseen’ by Jacinta Parsons on the Affirm Press website.