Bill Moss wants to be remembered for more than his millions, writes Rick Feneley.
Fabulously rich and still begging Date August 21, 2010
Bill Moss grew up without two things that help explain the man he has become. One was money. Moss saw little of it in the Guildford West fibro where he was raised, the fourth and youngest child of a gardener. Second, Moss toiled through his childhood, and then his early adult years, without knowing he had a terrible disease, a type of muscular dystrophy which, if diagnosed, would have explained the cramps, the backaches, the progressive slowing of his limbs and the spasmodic ''throwing'' of his legs as he walked, for which he was teased at school.
This is the same Bill Moss who would become fabulously rich at the ''Millionaires' Factory'', Macquarie Bank, from which he retired with a payout of more than $40 million three years ago. It is the same Moss who made plenty of other people absurdly rich along the way.
The former head of property and banking at Macquarie is devoting his ''retirement'' - a preposterous description given his productive output - and much of his personal wealth to helping science find some answers to the little-understood disease that is slowly but surely crippling him: facioscapulohumeral dystrophy, or FSHD.
At 56, Bill Moss laments: ''I've found that a lot of the doors that were open to me when I was helping people get rich weren't open to me when I was trying to promote a social charity. It actually made me very disillusioned with a lot of the wealthy people I had met. They had an attitude: we don't give to charity. And that really shocked me.''
For our lunch, Moss has chosen Glass Brasserie, the latest venture of the celebrity restaurateur Luke Mangan, in Sydney's Hilton Hotel. When the Herald arrives, Moss and Mangan are deep in discussion. Mangan is designing a three-course banquet, infused with chocolate, for a fund-raiser for Moss's project, the FSHD Global Research Foundation.
''Luke helps me,'' Moss explains as Mangan leaves us. ''If Luke wants some help, I help him. I only help people who help the foundation. I'm proud to say that.''
At first glance, Moss does not appear disabled. He has a cane nearby but no wheelchair. He must, however, decline our request to move to a better position for a photograph. ''I can't get up,'' he explains - not without the help of his assistant, who will be returning after lunch. ''I'm stuck until I get moved.''
Moss's facial expressions are somewhat muted and there is a persistent puckered protrusion of his lips. (''Generally, you have a problem in your lips. You can't close your mouth tightly. You can't blow up a balloon. You can't close your eyes properly. You have distortion in the facial muscles.'')
With the progressive wasting of his skeletal muscles, ''I'm getting a bit worse each day. Now I really can't walk unless I use a stick and hold someone's hand. Twelve months ago I could walk without holding someone's hand. With this disease, you can do one thing today and you can't do it tomorrow.''
this reality would be psychologically debilitating for many. For Moss it is his daily motivation. It was the same motivating force which, before he left Macquarie, spurred him to found Lime Taxis, a fleet of wheelchair-accessible cabs. Fed up with the two-hour waits for a taxi - and furious on behalf of thousands of disabled people - he turned his anger into action.
Now he wants to ''change the world''. He is determined to help find treatments or a cure for FSHD. ''Too late for me,'' he says, ''but I want to make a difference.'' And he wants to fight for the human rights of the one in five Australian people who have some form of disability; rights that the United Nations has set in stone but which its signatories, including Australia, fail to uphold.
When he was six or seven, Moss recalls of his days at Guildford West Public, ''I was the fastest runner at school. By the age of 12, I was the slowest runner in the class.'' He became still slower in his teens. He persevered with cricket, rugby, tennis and basketball but struggled to catch a ball or get up after a tackle.
He won a place at James Ruse, the selective state high school. His parents were role models for hard work. ''My mother used to work in Aussie Post and do cleaning and cooking to make sure the kids had a good education.'' But young Bill envied neighbours with new Holdens and Fords. Even in his youth, he remembers, he wanted to get ahead. ''I already wanted to change the world - from Guildford.''
But still he had no clue about his illness, and he suspects this was a blessing. There were signs, a pronounced winged scapula among them, but nobody understood them. There was pain but, with nothing to compare it to, he had no measure of its significance. He soldiered on.
Moss studied economics at the University of Sydney. Invited to undertake his honours, he declined. It would have meant forfeiting a year's income. He could earn $8000 in his first year in the state or Commonwealth public service. Moss applied for both.
''And I got rejected by both. I would laugh about it later, particularly when I was very successful at Macquarie. But it never really dawned on me until a couple of years ago, when I realised: 'Bill, you got rejected because you had a funny walk. And you got rejected because, even though you couldn't see it, the symptoms were there that you weren't quite normal.' You know, it was discrimination.''
Moss became a graduate trainee at ANZ. At 25 he married his first wife, Denise, with whom he had two children, Stephen, now 25, and Natalie, 23. It was not until Moss was 27 or 28 that he was diagnosed. Denise needed open-heart surgery and Moss met her specialist. ''He looked at me and said, 'You have FSHD.' Given what I know now - how little is still understood about this disease - it was a pretty remarkable diagnosis.''
And yet Moss had been living in denial. ''At that age, I'd never look at myself in the mirror. So what was I doing? Psychologically, I was afraid to confront what I looked like. So, I never saw it.''
Moss went to a neurologist. ''He said, 'Look, I can't tell you much about it. We don't know whether you should exercise or not exercise. All I can tell you is you'll be in a wheelchair by the time you're 50. So my advice to you is: don't work too hard; enjoy life.' I took a totally different view. I thought, I've got to achieve in 20 years what I would normally achieve in 40. I've got to be at my peak by my early 30s and have made all my money by the time I'm 40 … So that changed my life. It drove me.''
Moss had moved to Beneficial Finance, then the number one construction lender in NSW. In five years he progressed from graduate trainee to lending manager to leasing manager to credit manager to securities manager and finally state manager, with 80 staff, at age 30. In 1984 he was head-hunted to set up real estate at Hill Samuel, the year before it became Macquarie. He was lured with a staff of one, a shared secretary and a pay cut. ''I wanted the challenge of starting something from scratch.''
Twenty-three years later, in 2007, when he resigned from Macquarie, his division had real estate assets under management worth $30 billion and employed 1400 people in 12 countries. But that is not the story he wants to tell today.
Moss's abilities have towered over his disabilities, which were never an issue for the likes of David Clarke, Macquarie Bank's executive chairman, or Macquarie Group's chief executive, Allan Moss (no relation). Bill Moss did encounter discrimination, though - in middle-management. He once recommended someone whose expertise the bank needed. ''About three weeks later I said, 'Whatever happened to that person I referred through.' And they said, 'Oh, we couldn't employ them because they had a disability.' I was horrified … If I had gone to David Clarke, he would have been horrified.''
It is not about bosses so much as entrenched cultural prejudices, Moss believes. Will a disabled employee be as capable, require more sick days, impose costs on the business? Sometimes it is a fear of confronting disability. ''When I used to walk to work, I'd fall over a lot. I'd fall over in Pitt Street Mall. Eventually someone would help me get up, but I was always amazed that sometimes you'd wait for 60 or 90 seconds before anyone would offer to help.''
Returning from overseas, he would request a wheelchair at the airport. ''They'd wheel you as far as the gutter and say, 'You've got to get out here. We don't have the authority to take you to the car park because it's not owned by us. We don't have insurance for that.' '' A couple of years ago, he refused to get out of the wheelchair. The airport employee insisted, so he told her: ''Well OK, look, what I'll do - I'll crawl across the road. Could you tie my bags to my feet?'' She relented.
While making his millions, Moss took honorary roles on the Tourism Task Force and the Australian Securities and Investments Commission. He founded the Sydney Airports Forum. He joined Kevin Rudd's 2020 summit. He was made a member of the Order of Australia. His philanthropy reached from the arts to disability. He personally funded the establishment of Gunya Tourism, a resort in the Titjikala community near Alice Springs, a model for self-sustaining Aboriginal businesses.
In his last months at Macquarie, Moss required an assistant to tie his shoes. He needed more time for his health, his family and his wife, Lata. And for his new project, FSHD.
The Australian government, he says, has spent not a cent on researching the disease, so there is no database of sufferers; no clue how many there may be. ''And we still don't even know if you should exercise or not.'' A 2008 study suggests it may be the most common dystrophy in Europe, affecting one in 15,000 people.
After he retired, Moss went to the Macquarie Bank Foundation, which said it would love to help. ''I put in two applications and they rejected both. You can create billions of dollars of value for a corporation …'' Other rich contacts disappointed. So he went back to work. With friends he established Moss Capital, corporate guns for hire. Moss's slice - all he earns - goes to his research foundation.
In the past two years it has funded seven research projects in the US, the Netherlands, Italy, France and Australia. ''We've already made some major breakthroughs. We've created the world's first embryonic stem-cell line of FSHD. That's now being pursued around the world in research. We've done some amazing stuff with Monash University, with some very promising results on procedures that might improve muscle strength, not only for FSHD but for people in old age.''
Moss's assistant arrives at our table to lift him to standing position. They begin to shuffle away.
''If I can leave one memory in my life,'' says Moss, ''I don't want it to be about Macquarie Bank. It got me to a point. It developed me. It was great. It gave me a chance to meet global leaders and build businesses that might never have been built, and to change that world. But that's not what I want to be remembered for. I want to be remembered for making a difference to society.''
An itch that won't go away. Some days Bill Moss feels like an ''unofficial disabilities ombudsman''. He fields calls from many disabled people. He lectures on the subject. And he is happy to be regarded as an irritant for Bill Shorten, the federal parliamentary secretary for disabilities.
''Bill's a remarkable guy,'' Moss says. ''He has the ability to become prime minister one day. He has his heart in the right place. He has created this incredible awareness about disability. He's called it a national disgrace.
''Bill's problem is that he hasn't been able to carry through with the bureaucracy and his own party to make changes. The reason for that, I don't know. Is it because it isn't a cabinet ministry, which it needs to be? Is it because, within cabinet, disabilities are not taken seriously? Is it because there are no votes in it?''
Moss recently shared a stage with Shorten at an event organised by Mad as Hell, an advocacy group which argues there are votes in it: the 1.4 million Australians with a serious disability - the population of Adelaide and Hobart combined - and 700,000 full-time carers. One mother told the Herald her family had spent $500,000 on equipment for her 15-year-old son - none of it covered by government - and was about to spend $20,000 on a wheelchair.
Moss, like Mad as Hell, says it is high time Australia had a no-fault disability insurance scheme, paid for with a Medicare-style levy. Shorten awaits a Productivity Commission inquiry into the need for such a scheme.