Restless and Roaring: How a young entrepreneur is opening doors for disabled artists
“I cannot for the life of me get a good photo of this piece. So, close your eyes and imagine sunshine yellow paper, bright white and dense black,” Stef Hodgson instructs her over 1,000 Instagram followers.
Resembling an underwater flower, the photo is of a daisy yellow mandala. Her description can’t capture the comforting somnolence of art nouveau leaves and jelly spirals blossoming from a white centre.
“I wanted to create a ‘happiness mandala’ and I think I kind of love it,” the 23-year old Melburnian wrote on the Instagram post.
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Originating in India several thousand years ago, mandala artwork melds colourful patterns and deep religious symbolism to explore the wholeness of the universe. For Stef, that wholeness isn’t the universe, but her body. Since she was a young girl, Stef has suffered from chronic fatigue syndrome (CFS), a physiological condition that leaves her drained and exhausted, regardless of rest. Her immune system in particular is china-doll fragile: “I’ve had about ten viruses since March,” Stef explained.
Now running her own non-profit for chronic illnesses, Stef has had to work hard to feel whole with her body.
During her worst bouts of fatigue, Stefcan only manage ten minutes of work a day.
“I like to tell people it’s like having a pet elephant,” Stef said. ””It takes up heaps of room, it wants to sit on you and crush you a bit. You really have to work around it in everything that you do, cause it’s always there.“
In Australia, roughly 240,000 people are also diagnosed with CFS, almost ten times the number of people with multiple sclerosis. Despite this, little is known about the condition. Treatment is poor, ranging from exercise and meditation, to cognitive behavioural therapies used for mental health issues.
For many, including Stef, these treatments do little to make day-to-day life easy. Most severely, she had to drop out of her Arts course at the University of Melbourne due to the university’s strict policies surrounding due dates and class attendance. “They really made my life hell,” Stef said about the experience. After leaving university, Stef found herself facing long hours by herself, with only her exhaustion as company.
Stef’s isolation was compounded by the difficulty in finding a job which would offer her the flexibility she required. “I struggled to interact with the world in a way that works for me,” said Stef, as most workplaces — even some charities — wouldn’t work around her needs.
“Boredom is the enemy.”
It was only after flicking blankly through a magazine, she found an outlet: mandalas. She started delicately drawing whenever she could muster the energy.
“When I feel crappy, I can do mandalas. When I feel good, I can do mandalas.”
For Stef, art should be something you chip away at, piece-by-piece until you have something you can be proud of. “Your ability to create shouldn’t be limited by your energy levels.”
Mandalas are not for the faint of heart, however: a piece on average takes 10–20 hours for Stef to complete, depending on the size, with the larger pieces taking as long as 30 hours. But in some ways, the long and sometimes arduous detail needed for a good mandala has been a godsend for someone with so little control over her body.
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“Mandalas are so mathematical, and they’re so precise it gave me an outlet for some of the frustration I had about the situation I was in. It gave me something to control when I didn’t have control over very much.”
The patience honed through her craft has even helped Stef better manage her chronic illness.
“I can now walk half an hour [without feeling tired]. It took me four years just to get to this point.”
The world can still be hostile for people who can’t work a regular 8-hour day, week after week says Stef. “I was sick of trying to convince others to let me get a foot in the door.”
This is not a unique situation for anyone with a disability. According to the Australian Institute of Health and Welfare, people with a disability are twice as likely to be unemployed and half as likely to complete a bachelor’s degree.
So instead, Stef started a business. Rather than settling for someone else’s expectations and rules, she had a chance to make her own.
“I’m gonna make my own door, and let other people like me into it!”
The name of that door is Couch Empire, a non-profit Stef started in 2018. Inspired by the difficulties she faced trying to deal with an ableist job market, Couch Empire aims to help artists with chronic illnesses make money from their art, regardless of their energy levels.
The organisation’s website explains in bold text that, “Here, Chronic Illnesses are assets rather than disabilities.” To do this, Couch Empire hosts motivational speaking and in-person workshops for organisations, as well as an online store for artists to sell their wares.
In March earlier this year, Couch Empire held their first event: an art exhibit bringing together the work of five artists with chronic illnesses. About a quarter of the proceeds were split evenly among the artists, turning their passions into something that’s financially sustainable.
Held in the Gasworks Art Park, a former gas plant in Melbourne’s South turned art gallery, the gallery imbued an industrial edge to the opening night. The works, while differing in style and technique, put the lives of the differently-abled front and centre, acknowledging the pain, the joy and the humour.
And on the ramp onto the second-floor, Stef’s four mandalas shone in their monochromatic glory. Her spiral mandalas contain more intricate detail than a gothic chapel, filled in with fine liner pen.
While chronic illnesses still carry a stigma, Stef hopes the exhibit showed the potential of anyone to create works that resonate, regardless of how they did it.
“If you have a chronic illness, you still have something to contribute.”
Since the exhibition in March, the world has become unrecognisable, as COVID-19 sweeps the planet and changes our day-to-day lives. For Couch Empire, the pandemic has forced Stef to put her future plans on hold for the time being.
Nonetheless, Stef hopes that we don’t miss the lessons from the lockdown.
“COVID shows the world that accessibility helps everybody. After this, I hope working from home becomes a legitimate option. I hope that remote study becomes a legitimate option. At the moment, so much suffering has been created by these systems which aren’t really designed for people with chronic illnesses and disabilities in mind at all… I hope Couch Empire is a part of that movement.”
