My Australia

The talented artist with cystic fibrosis who had to fight to be accepted by Australia

"The more I’ve spoken about my illness the more very long letters about people’s personal lives I receive," Grant says. Source: SBS News

Grant Jonathon Gronewold, AKA HTMLflowers, faced a lengthy immigration battle to move to Australia as a child and was told he wouldn’t live to see his 18th birthday. Now 32, he continues to share the reality of life with a chronic illness through his work so others feel less alone.

This is part of the My Australia series, exploring identity and difference through the stories of extraordinary Australians. 

Grant Jonathon Gronewold is living on borrowed time.

After being diagnosed with genetic lung disorder cystic fibrosis as a baby in the United States, his life expectancy was just 17 years. That deadline came and went, but the 32-year-old is now facing another hurdle; he is waiting for a double lung transplant.

There is no known cure for cystic fibrosis, a condition affecting 3,500 Australians.

The theme of death, or what it means to live when you are trying not to die every day, is present in much of Grant’s hip hop music, which he produces under the name HTMLflowers. It also features in the comics and zines he creates from the Melbourne inner-city suburb of Brunswick.

“I just don’t care as much as other people seem to about whether things turn out as planned as an artist,” Grant tells SBS News from his shared studio space. Around the room, white paint peels away from dilapidated walls to reveal mottled green and purple bricks, while plants in glass jars soak up the sun.

“To rewrite my experience and to gain ownership over a moment in my life as someone with an illness is a really powerful, empowering thing because the nature of living with a disability is that you rarely have control over what happens to you.”

To his left, through an overgrown backyard, complete with a cat, dog, five bikes and a pottery kiln, is a small shed where Grant often works late into the night. As he sketches, putting the final touches to a new comic about Australia's health system, rap music streams from a portable speaker on his desk.

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Grant says he first started recording music as a teenager. He describes those first attempts as “plainly spoken stuff about how scared I was to die at a young age”. Years later, his 2018 album Chrome Halo - a reference to the round, metal light fixtures used in hospitals - was shortlisted for the Australian Music Prize, alongside Paul Kelly and Sampa The Great

Before music though, was a love of visual art.

“When I was a kid, my mum used to make me paint. She would just come home and put a paintbrush in my hand,” he says. “I think she always wanted me to be an artist.”

A new life in Australia

Grant, his mother Karen Conrad, and younger brother Tyler Minder moved to Australia from Illinois in 1998 when he was 10 years old. 

Karen, who is soon to move into disability advocacy work, believes migrating to a country with a better health care system saved her son’s life. 

“It’s much better here than it is in America, and that’s not saying a whole lot, but I don’t even think that Grant would be here with us if we were still there,” she says.

But it wasn't easy. 

Grant as a baby in Illinois. He was diagnosed with cystic fibrosis at six months old.
Grant as a baby in Illinois. He was diagnosed with cystic fibrosis at six months old.
Supplied

Karen had married an Australian man, but due to the country's migration health requirement, which prevents any prospective migrant with a disability or illness from obtaining a permanent visa if it is deemed their condition will be too costly, the process of gaining permanent residency, and eventually, citizenship, for Grant was a long battle. 

“Because Grant has cystic fibrosis they immediately said ‘no, he can’t stay’ but you and Tyler, your healthy son, can stay,” she says.

“That was just not going to happen. I couldn’t believe that was the rule for everyone, so I didn’t know how to respond other than to just fight harder.”

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After the initial rejection, Karen says she was not allowed to work for some time. She also wasn’t able to receive government disability support for Grant.

It took the family more than 10 years to become Australian citizens - a process Karen says financially bankrupted her as she struggled to support Grant’s health needs.

A bipartisan parliamentary inquiry in 2010 found Australia’s migration law unfairly discriminates against people with a disability or chronic illness, but almost a decade later the system remains largely unchanged.

The government says the health requirement exists still to protect Australians from “public health and safety risks” such as infectious diseases, to safeguard access for Australians to medical services that are in short supply, and to limit the amount of money the government has to spend on health services.

The family at their citizenship ceremony in 2008.
The family at their citizenship ceremony in 2008.
Supplied

“The government and the people who decide these things, they don’t know who they’re saying no to. In this case, they almost said no to Grant Gronewald, aka HTMLflowers, a very good artist,” Karen says.

“I mean they could say no to Albert Einstein. People who have disabilities have just as much to offer as people who are able.”

While his mother speaks, Grant sits quietly, working on a 1000-piece puzzle of Japan’s Mount Fuji. He says he didn’t understand the gravity of the struggle to get permanent residency when he was young but just knew “things were hard”.

'They felt like they were seen too'

Sharing the gritty details of his life in and out of hospital with respiratory issues, Grant has created a space where others living with chronic illnesses and disabilities can recognise their own struggles.

“The more I’ve spoken about my illness the more very long letters about people’s personal lives I receive in my email or to my house sometimes,” he says.

“It’s hard to describe how good it feels to finally express that part of my life and to have other people say that through me explaining what I went through, they felt like they were seen too.”

But exploring his own reality often means considering how Australia’s health system can let people with disabilities and chronic illnesses down.

Grant is currently waiting for a double lung transplant.
Grant is currently waiting for a double lung transplant.
Instagram/HTMLflowers

“Living in Australia with an illness is really complicated. I think everyone in the world thinks you have full mechanised, [the] best health care that exists, but it’s still really hard for a lot of people living with disabilities, including myself, to build a life that you feel happy living,” he says. 

He talks about how people with disabilities and illnesses can be restricted from travelling due to financial and health constraints and forced to spend time away from loved ones for treatment, and how he believes Australia's hospital system is ill-equipped to cater for support with chronic illnesses.

It’s these barriers, often invisible to the able-bodied population, that have meant Grant rarely performs his music live now, instead focusing on his comics, an art form he says is more “accessible” to someone with a chronic illness.

While touring following the release of Chrome Halo, Grant says he found performing live to be an “able-bodied paradise”.

“The club scene and the general scene of festivals and stuff just isn’t set up for someone who has 30 per cent lung function,” he says.

“I don’t play very much at all because the clubs are filled with flashing lights that set off people’s seizures, everyone’s just come in from a massive smoking binge which sets off my coughing fits, [and] it’s always up the tightest, smallest set of stairs that absolutely no one with mobility issues can even begin to get in to.”

Grant commends people working to increase disability awareness and accessibility but doesn’t see that as his battle.

“I don’t know if I really want to try and fix a part of society that hasn’t really made itself open to me and people like me,” he says.

Grant and family
Grant, right, with his mother and brother at his studio.
SBS News

More than 10 years after becoming an Australian, Grant says he is now facing another kind of “lottery”; whether or not he will be put on the waiting list for a new set of lungs.

At the moment, he is in the process of working to improve his health to get to a point of what he calls “respectability” so the panel of doctors allocating transplants will accept his case. 

The time and effort spent focusing on his health has had a “staggering” effect on his creative output, he says.

“It’s really hard to give up everything you love in a day so you can’t fight this never-ending battle with no fuel in the tank.”

Grant says he is unsure whether the fight is worth it, but will keep sharing his story either way.

“I want every disabled person in the world to tell the truth about their experience,” he says. “I want that to be true of anyone going through anything.”

Readers seeking support with mental health can contact Beyond Blue on 1300 22 4636. More information is available at Beyond Blue.org.au

Read more from the My Australia series here

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