‘Only those in this unfortunate club really understand’
SHE lost her husband 11 years ago to an asbestos-related disease. He also lost his wife to the same asbestos-related cancer. Now, Karen Banton and Rod Smith are married and determined to help other Australians affected by similar diseases.
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FOR many Australians, the name Bernie Banton conjures up a fighter’s spirit and bittersweet victories. He was an advocate for sufferers of asbestos-related diseases, and became the public face of the cause while battling them himself.
Bernie won high-profile legal tussles with his former employer James Hardie Industries — he’d been exposed to asbestos while working in one of its factories from 1968 to 1974 — to provide adequate compensation for himself and other workers. He was awarded an Order of Australia for services to the community in 2005.
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Throughout his campaigning, his wife Karen was always nearby.
“He was an amazing man — people idolised him,” she tells Stellar.
It’s a sentiment she shared, although she points out he was, in the end, clearly fallible.
“But what he achieved — obviously with help from the media, the unions and certain politicians — the essence of Bernie was he actually brought that emotional [side of the campaign] home to people, and was the human element.”
Karen not only campaigned with Bernie, she stood in his place when he was too ill to attend a tribunal for his final compensation case, and cared for him at their home in the final days of his life.
In 1999 he had been diagnosed with asbestosis (a lung disease resulting from the inhalation of asbestos particles) and asbestos-related pleural disease (ARPD).
In August 2007, he was further diagnosed with an aggressive cancer, peritoneal mesothelioma. It was this disease that claimed his life on November 27 that same year, mere days after winning what he knew would be his last fight for compensation. He was given a state funeral in New South Wales.
“He was at peace, and obviously he didn’t want to be leaving his loved ones, but he actually knew he was going somewhere far better,” says Karen.
“It was terribly sad for those of us left behind, but we have that assurance that we’re going to meet again.”
Since Bernie’s death the 56-year-old has carried on the work of supporting victims of asbestos-related diseases and their families with the Bernie Banton Foundation, which she set up in 2009. But this is not a role Karen tackles alone. She has found a new partner to share her life and work in Rod Smith, 60, whose own wife Julie also died from malignant pleural mesothelioma, an asbestos-related cancer, in September 2011.
While they found partnership through tragic circumstances, Karen’s zest for life is obvious from the moment she speaks.
“For me, it’s a case of being a glass half-full sort of person and being grateful,” she tells Stellar.
“Some people seem to draw an unlucky card more than others, but I’ve always had the attitude it’s not so much what happens to you in life, it’s how you respond.”
And while she now describes her relationship with Rod as a “blessing”, he says his first impression of her wasn’t so complimentary. Rod was part of a Victorian asbestos support organisation that was struggling with funding when he learnt her name.
“The first I knew about Karen Banton, I was angry,” admits Rod.
“My late wife Julie and I resurrected our support group that went bust in 2009, and in 2010 the first member of our group that died requested that in lieu of flowers, donations be made to the Bernie Banton Foundation. I’d never heard of Bernie Banton, even though I should have.”
From that inauspicious beginning, they crossed paths when Karen, Rod and Julie were all attending a June 2010 summit in support of asbestos victims and campaign groups. Karen became a supportive friend to the couple, spending time with them at their Victorian home. And it was actually Julie who suggested Karen and Rod might have a future together.
“Julie sensed Rod would be very lonely when she was no longer here,” says Karen.
“She said to a couple of people, ‘He should remarry when I’m gone, and I think he should marry Karen.’”
She turned out to be right — they were a good match. Rod began working as a volunteer with the Bernie Banton Foundation in January 2012, just months after Julie died. By April that year, he and Karen were married. Rod has since become the foundation’s awareness and support coordinator, and the two work as full-time volunteers for the charity.
While Karen is aware some might raise an eyebrow at the genesis of their relationship, she points to their unique shared history of advocacy and caring for a spouse with terminal mesothelioma.
“People might not realise the friendship and the union that people in this unfortunate club have, where you really have to have lived through it [to know what it’s like],” she explains.
That shared understanding gives them the capacity to offer support to others grappling with asbestos-related illness. When people are facing a personal nadir — that moment just after a diagnosis — the foundation will get a phone call, and Karen or Rod are often the ones who answer.
“Without fail, people sound stressed when they first ring us,” says Karen.
“And at the end of the call they say, ‘You’ve put things in perspective for me.’ They have a path forward and some hope, and that’s what Rod does so well — better than me. He is out of the box in that regard.”
So they have already helped people find peer support, legal help and medical care. But work remains: Australia has one of the highest rates of asbestos-related cancer deaths in the world, hundreds of new cases arising every year and two people dead from mesothelioma every day.
The foundation has to keep fighting for financial resources and support, not to mention ensuring it has a future once the couple at its helm retire.
“The numbers are getting more prolific, but where do we go?” asks Rod.
“We’re looking at succession planning, but everyone assumes we get a lot of funding, and the reality is we don’t. Where that leads the foundation, I’m not certain.
“The disease issue is not going away. It’s getting worse, and we’re not finding the Holy Grail in terms of treatment. You look at it all... support is badly needed. People really do need what we offer.”
November is Asbestos Awareness Month. For more information, visit the Bernie Banton Foundation, berniebanton.com.au.
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Originally published as ‘Only those in this unfortunate club really understand’
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