“It’s how you re­spond that mat­ters”

Bernie Ban­ton’s widow Karen and her hus­band tell Stel­lar why they’ll keep fighting to raise aware­ness of the as­bestos-re­lated dis­eases that took their part­ners.

The Sunday Telegraph (Sydney) - Stellar - - Cotents - Photography NICK SCOTT In­ter­view VIC­TO­RIA HANNAFORD

or many Aus­tralians, the name Bernie Ban­ton con­jures up a fighter’s spirit and bit­ter­sweet vic­to­ries. He was an ad­vo­cate for suf­fer­ers of as­bestosre­lated 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.

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 as­bestosre­lated 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.

“Peo­ple might not re­alise the friend­ship and the union that peo­ple in this un­for­tu­nate club have”

THE Anti-as­bestos FIGHT GOES cam­paigner ON (clock­wise Karen Ban­ton from top with left) her late hus­band Bernie Ban­ton and for­mer MP Peter Gar­rett at a 2005 protest against James Hardie In­dus­tries; Karen as pho­tographed for Stel­lar; with her hus­band Rod Smith by her side, she con­tin­ues to sup­port victims of as­bestos-re­lated dis­ease.

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