In 1987, eighty-nine years after British factory inspectors had initially warned of the “evil effects” of asbestos dust, global manufacturing giant James Hardie Industries stopped making products using the substance. A naturally occurring mineral made up of microscopic fibres, asbestos is resistant to fire, heat and chemicals and was widely used in the construction industry, especially in Australia. The first confirmed asbestos-related deaths were documented in 1906.

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In March of 2008, Greg Hayes, aged fifty-nine, was being transported home from a hospice, granting him his final wish to die in his bed. As the ambulance pulled into his tree-lined driveway on the South Coast of New South Wales, his ravaged lungs gave way.

Greg was a loving father to four children and two stepchildren. At the time of his death, he was the primary parent to his two daughters, aged fifteen and eleven. Over the years, he would make the three-hour drive every second Friday to drop us off with our mother, returning to collect us on Sunday. To make these trips go faster, we would play spelling games. When I — his youngest — was five, I would insist on spelling out the three most difficult words I knew to any adult I met, followed by my definition of them:

“Encyclopedia”           a reference book
“Photosynthesis”        how plants make their own food using sunlight
“Mesothelioma”         asbestos-related lung cancer

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It was 2007 when Greg, my dad, asked my sister and me to sit on the sofa. The November sun shone so strongly through the living room window my skin began to itch. I’d noticed his wheezing had worsened during the nights, he’d stopped picking us up from school, and he’d lost more weight. Avoiding his gaze, I busied myself by picking at my fingernails as he explained what I already knew. He used terms like “pleurodesis”, “metastasised”, and “palliative”, words that, at only eleven, I was already familiar with. He asked, “Do you know what will happen then?” and for reasons I can’t quite explain, I said, “You’ll get better?” His eyebrows met each other as he said he was sorry for asking. “No. Then I’ll die.”

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A dedicated runner and swimmer, it was seemingly overnight that Dad found himself unable to navigate a set of stairs without pausing for breath. He went to his GP, conveniently located downstairs from his sports massage clinic. Three hours later, he was admitted to Royal Prince Alfred Hospital in Sydney’s inner west, where he would spend two weeks undergoing diagnostic tests and procedures to drain the fluid out of his lungs before being given two choices:

I. Undergo chemotherapy and hopefully extend a three-month prognosis into six months or;
II. Go home and spend his remaining days with his children.

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James Hardie Industries profited from producing a substance they knew to be deadly. Dad, who had worked as a plumber when he first left high school, spent years sawing through the stuff. In 2001, with pressure mounting for James Hardie to take financial responsibility for victims, it legally separated the arm of the entity liable for asbestos-related diseases from the rest of the company. Then, it moved the majority of its holdings offshore, leaving behind a new company, the Medical Research and Compensation Foundation Ltd (MRCF), with assets of $293 million from which compensation could be sought. But the company’s asbestos-laden products had been a staple of the Australian construction industry for so long, meaning the fund was just a drop in the ocean, and by 2003, the money had dried up.

The timing of Dad’s diagnosis meant he was one of those who received a payout. Too sick to work, the compensation meant he could put a modest roof over our heads. It also meant he felt a duty to other sufferers who couldn’t do the same. This led to what he called the second most important role in his life — advocate for sufferers
of asbestos-related diseases. It was the backdrop of my childhood. I tasted — and spat out — an oyster at a dinner with federal politicians, I visited his friends in the hospital, and I hugged him when, one by one, they lost their battles.

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Laurie was one of my dad’s closest friends. He had three boys my age and a fishing boat he’d become too sick to use. Knowing my dad’s passion for all things boating and water, he wanted to lend him the boat. My dad didn’t want to accept the loan, but Laurie wasn’t a man you said no to. He accepted it on one proviso: Laurie was to get strong enough to be the one to take us out on it. One night after dinner, we’d pulled up in our driveway when Dad got a phone call. He hung up before we walked into our house, passing Laurie’s boat with the name Second Chance painted on the side. My Dad began to cry.

“Last bloody chance,” he said before telling us between sobs that Laurie wouldn’t be taking the boat out again. A week later, we went to Laurie’s house to pay our respects. My sister Kat and I played out the back with the boys. I didn’t know what to say. I was so used to people dying yet so unequipped to discuss it. One of them said, “This is where Dad and I used to play,” and I smiled and followed his lead as he changed the conversation. Really, though, I had questions burning a hole in my brain. I knew my dad had far outlived his prognosis, which was shorter than Laurie’s.

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Dad believed if he could just get in a room with those calling the shots and show them the victims were real people, not just stats costing their bottom line, they might begin to care. This is why he bought a small number of shares in the company. It gave him the chance to speak at their annual shareholders meetings. We would accompany him to these events. Not just because he was our main caregiver but because a single dad with his two young daughters beside him was sure to pull on the heartstrings. And it worked. To an extent.

Dad got an audience with Meredith Hellicar, the Chair of James Hardie’s board. Meredith had been a board member when the company had restructured itself in a ploy to avoid compensating victims and became Chair in 2004, three years after. A far more forgiving person than many, Dad formed an acquaintanceship with Meredith and would go on to introduce her to key advocates in the movement. She would even speak at his funeral in 2008, a year before the NSW Supreme Court found she and the other directors had knowingly misled the public in 2001 by issuing a press release that assured the MRCF would fund all future claims from victims of asbestos-related diseases.

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When you drive to Stockland, the biggest shopping centre complex in the small town of Nowra where I grew up, you cross a bridge. Each time our car crossed the threshold, I would challenge my dad to our competition, one he’d assure me I’d never win. Who could hold their breath the longest? When he inevitably won, he would remind me it wasn’t a lack of effort on my part; he had far more practice in the art of being unable to breathe.

One day, in a town hall in Western Sydney, I met the youngest mesothelioma sufferer so far. She was in her mid-thirties. As a young girl, she’d shaken out her tradie father’s uniform before putting it in the washing machine, giving the particles a pathway into her respiratory system. She had been denied compensation. After the MRCF funds ran out, a judicial enquiry in 2004 found the company’s actions to be unethical. It wasn’t until 2007 that years of public lobbying and government pressure saw an agreement reached. James Hardie guaranteed a fund of $4 billion to cover future compensation claims.

Dad slept on a towel or two. This was easier than washing his sheets daily after they’d been drenched in sweat. It also made it more comfortable for me. Every night, for as long as I could remember, I would fall asleep in my — or, more likely, my sister’s — bed before, like clockwork, being awoken by Dad’s hacking cough. I would slip into his bed and curl up beside him to monitor his breaths, thankful his king bed allowed me to avoid the sweat-soaked towels.

The one night he needed me was the one night I didn’t wake up.

I was asleep in my sister’s room, beneath the Simple Plan and Greenday posters, when his partner Lesley woke me to tell me Dad had had a heart attack and was in hospital. Lesley didn’t live with us and I’d never seen her in the morning except on holidays. Now here I was, a little girl in her sister’s bed wearing her Saddle Club pyjamas, having failed at her one job: keeping Dad alive. I’m still unsure who called the ambulance, but it was the last time he was ever in his bed. Had I known it would be the final night he’d sit beside me in his ratty Nike t-shirt and sing me to sleep, I would have committed it to memory.

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The battle for victims of James Hardie’s negligence continued long after Dad’s death. Citing a shortfall of cash in 2015, the company appealed to the Supreme Court of NSW to pay compensation in instalments rather than lump sums. The average prognosis for those diagnosed with mesothelioma is death within 11 months, with less than 10 per cent of patients making it to the five-year mark. My dad, who died eight years after his diagnosis, was an anomaly. In response to this appeal, the Asbestos Diseases Foundation of Australia President, Barry Robson, wrote “Asbestos victims don’t die in instalments.”

Mesothelioma develops 20–60 years after asbestos exposure. Currently, 4,000 Australians die yearly from asbestos-related diseases. Given the delay from exposure to illness, the Asbestos Safety and Eradication Agency says that number has not yet reached its peak.