The Invisible Illness Project
Creative Producer Samantha Martin takes a moment to reflect on an arduous year as a freelancer with a chronic health conditions, displaced by Australia's hard borders, and trying to keep projects afloat by ample grant writing.
Hey, it's been a while. I don't know how to approach this post without sounding cheesy or sappy because that's my default "reflective writing" mode, but here's a quick go.
It's might look it's been quiet on the home front at Get Well, but ebbs and flows are an inherent part of being a grassroots, start-up circus company that champions artists with chronic pain and illness in the middle of a pandemic: productivity is fluid. It's also been important for us to be kind and understanding with ourselves that creativity (and motivation) in lockdown is sometimes hard, and pacing ourselves with stress and hurdles is one of many healthy ways of managing show development during a global crisis.
For my own context: at the start of Australia's COVID-19 restrictions, I was passing through Perth for my grandmother's funeral when the borders closed and McGowan's 'island within an island' began. I made the difficult decision to stay in WA (as a freelancer, all of my work was cancelled anyway) and said goodbye to Melbourne for what has now been over 9 months. Meanwhile in Melbourne, my collaborators Em, Jon and Evie were experiencing 112 days of lockdown, unable to meet more than once or twice to start creative development on our title circus work. We jumped into other modes and pitched for this pilot online journal to start documented a disjointed, extended, long-distance creative development. What it's become is different than I could've expected: Evie has published pieces about gender inclusivity in healthcare that have been used and shared by online endometriosis communities as a tool for accessibility and inclusivity, and I couldn't be prouder. This page has become a resource for community. We've been contacted by international artists and advocates who are featured on our resources and artists list. We've resonated with an online community. So, despite being 12 months behind in physical development, postponing tours, turning down funding opportunities: we've found ourselves on a different track that's still deeply embedded in community work and creativity.
This is me waving from Boorloo (Perth, WA). I've recently had the incredible privilege to launch a project that aligns with my vision for this work, on screen. Filmmaker and long time friend Jacqueline Pelczar (Of Single Ladies, Sparkles) and I applied for Propel Youth Arts' YCulture Grants presented by DrugAware, and were able to launch The Invisible Illness Project just last week. The series seeks to bring visibility to the invisibly ill.
The Invisible Illness Project is an indie documentary series that follows the lives and experiences of young people with invisible illnesses.
What is an invisible illness?
"An invisible illness is an umbrella term for any medical condition that isn’t easily visible to others. This includes chronic physical conditions such as arthritis, diabetes, fibromyalgia, and others — but also mental illnesses. Living with an invisible illness often leads to judgement and criticism because others believe you look fine on the outside, and therefore must be “making up” your suffering." - Renee Fabian
When Jacq and I began this project in August, we were genuinely worried we wouldn't be able to find 6 young folk in Perth who wanted to contribute their personal stories in a public forum. To our surprise, we ended up with over 70 applications, with an overwhelming diversity of conditions, ages, and experiences. We've been blown away with the generosity, bravery and sincerity of the Invisible Illness (#spoonie) community in Perth. Maybe I shouldn't have been as surprised given my track record of incredible collaborators over the past 12 months, and all those featured in Emily's "More Than A Statistic".
[ID: A 26-year-old girl with dark hair sits on a chair in front of a peach coloured fabric screen, in front of two film cameras and LED lights in a plain room. She is being filmed talking, and is smiling at the team of young women who sit behind the cameras.] Photo by Alice Ding.
I'll be back to write more about this project, but at this stage of development we have received funding to produce a concept trailer that was screened at The Backlot Cinema in a community event for participants, family, friends and crew, followed by a Q&A where some of the participants discussed what representation means to them (and us, as creators). Despite having watched the trailer countless times in the editing process, I still shed a tear or five watching these 8 young powerhouses talk about their journeys on the big screen (sappy). The shared empathy, understanding and strength was powerful (very sappy).
This project aims to bring visibility to the invisibly ill. The journey from childhood into adulthood is a tricky one, let alone while navigating a complicated, expensive, arduous health journey too. Sharing these voices and fostering storytelling and advocacy is a really exciting place to be and important for young people to see that they're not alone, and they have a community. I've been incredibly humbled by the process.
[ID: A 26-year-old girl with dark hair in a pony tail yields two gold boxing gloves, wearing a black t-shirt that reads "we don't know how strong we are until being strong is the only choice we have - Crohn's Disease Warrior". She punches in a muay thai pose in front of LED lights on a filmset.]
You can follow TIIP on Instagram and Facebook. You can also see some behind the scenes content on our Instagram highlights. I'm really excited to watch the audience and creative crossovers between Get Well and The Invisible Illness Project.
Until the series has launched, I highly recommend checking out some of these young folks' work. These are our three panelists:
Imani is a 14-year-old author and is currently rewriting their first self publication and their new book with Elhers Danlos Syndrome;
Jakeb is an incredible 24-year-old mental health activist, plays 13 instruments and has a podcast called Our Manic Mates to shift the stigma and bring awareness into Bipolar.
Watch this space, circus coming atchya soon, and have a bloody lovely festive season (whatever that might look like for you), and remember to be kind to yourselves.