This was published 12 years ago
'His eyes would just stare out'
Jon Blake's death has shone a spotlight on carers and their charges, writes Neil McMahon.
JON BLAKE'S life was lived in two acts, and he came formidably armed for both. In the first, he tapped a talent given lift-off by a particular kind of handsomeness that suggested a young man bound for Hollywood. In the second, he deployed more mysterious blessings: an inner spirit whose expression was limited by the few tools of his trade he had left.
An actor's weapons are his face and his body. Crippled and silenced by an accident that should have killed him, Blake found a way to use both. A thumbs-up meant yes. A thumbs-down, no. Lips pressed firmly together might indicate a protest. A firm blink confirmed understanding. This was the script he was stuck with; what else went on inside will always be his secret.
A backward glance ... Jon Blake at a screening of his 1987 movie The Lighthorsemen just weeks before he died.
Blake died last Monday, aged 52, but for most of us was frozen in time as the rising star whose career was cut short by a car accident in 1986. Few saw him in the 25 years since; he was largely a memory even when he was alive. For those who knew the silent Jon Blake, the memories are more complicated. They saw the battles: his war with the body that trapped him; the long fight waged by his mother, Mascot, to care for him, even when others said she was doing it all wrong; and the torments that define the lives of families coping with the catastrophic disability of a loved one.
"I never saw him cry," says Leanne Clarke, who was hired by Blake's mother to look after the quadriplegic and brain-damaged actor in the mid-1990s. "You could get a bit of a smile out of him. You'd try to have a joke and talk about funny stuff, talk about what's going on on the TV and you'd get a little bit of a turn up of the mouth, but not a definite big smile like you'd imagine. His face was fairly blank most of the time. His eyes would just stare out. What was there to look at? A couple of trees?"
A portrait of actor Jon Blake taken in 1981.
Clarke was just 25 at the time and was well accustomed to two things: actors, through her work as a horse wrangler on film sets; and disabilities, as a residential care worker employed by the Department of Community Services. What she wasn't prepared for was her first meeting with the star she had idolised as a fan.
"At first I was shocked," Clarke says. "He wasn't the man I had seen on the screen. I had to separate the two people, otherwise my heart would break. That was like an instant shock but that went straight away as well. Obviously, he's had a car accident, he's a quadriplegic, he's got a brain injury, he's no longer the man I saw on the screen."
Clarke insisted that Blake sit in on her first interview with his mother. "She said, 'But he doesn't talk,' and I said, 'Yes I know that, but he's got to approve me as well.' "
She explains how Blake would respond. "It was very simple communication. He would give me a definite thumbs-up and a definite thumbs-down and a definite blink. [It was] a definite thumbs-up, like 'bewdy mate', definite thumbs-up with a fist. When he was very fatigued [he] may not give the blinking signal so much but if he was fresh and feeling good about himself . . . if I asked him something and if I wasn't sure of his answer, I'd say, 'Jon, I need a definite blink,' and he'd give it to me."
Devoted ... Blake's mother, Mascot, who died in 2007, gave up her career as a violinist to care for him.
Clarke saw close up the difficulties faced by Mascot, whose determination to care for her son became the narrative that drove coverage of the actor's later life. There were court battles – in 1995 she won a record $32 million compensation payout, based on an assessment of her son's likely rise to stardom and its riches. (It was reduced to $7.6 million on appeal.) She gave up her career as a violinist with the Sydney Symphony to look after him. She won admiration for her devotion. But there was controversy: in 1996, she accused Blake's friends of abducting him because they disagreed with the kind of care she was providing.
"She absolutely doted over him," Clarke says. "She would insist on sleeping next to his bed every night, even though I was on a 12-hour shift, seven until seven. She was emotionally and physically drained.
Jon Blake in the the movie The Lighthorsemen.
"And that, too, broke my heart . . . there's got to be a system where they can be taken care of, where people don't have to go it alone."
Clarke wanted to get her patient out in the world – take him in his wheelchair to the beach or to a cafe to meet friends. Invariably, she says, Mascot resisted. He spent nearly all his time in his room at his Castlecrag home. At times Clarke would respond to what she believed Blake wanted and he'd conspire in cheeky defiance of his mother. Carer and patient would share a joke. "I said to him, 'You know I'm gonna cop it from your mum, don't you?' And he'd give me the thumbs-up."
A photograph of the cast members from the TV drama series The Restless Years shows, Jon Blake, centre.
Despite such differences, Clarke remains full of admiration for Blake's mother, who died in 2007. "I take my hat off to her. She was amazing. She just kept battling through. I don't know how she did it."
Indeed, Blake's passing serves as a timely reminder of more than one man's tragedy. Clarke says it illustrates the huge battles waged by carers – often elderly parents – who can have their lives consumed by a catastrophic injury to a loved one.
Ken Baker, the chief executive of National Disability Services – a non-government group, said of Blake's story: "It's unusual in that it is a very small proportion of the population. But it is certainly not unique." Baker says thousands of families are living with similar pressures every day – under existing laws their access to services and assistance is determined by which state they live in. "It's very much been a lottery."
That may be about to change. In February, the Productivity Commission released a draft report on disability services that concluded: "The system is unfair and does not work well. Not enough money is provided to help people with disabilities. It does not give people with a disability much choice and they cannot be sure they will get the supports they need."
The solution: measures to end the uncertainty and disparity. A National Disability Insurance Scheme would be universal, like Medicare, ensuring anyone with a significant disability gets long-term care and support. A National Injury Insurance Scheme would cover the lifetime care of people who suffer a catastrophic injury in an accident. The commission will deliver its final report to the federal government next month and hopes the reforms will be introduced between 2014 and 2018.
Patricia Scott, who headed the commission's disability services inquiry, told The Sun-Herald it was long overdue. "In Jon's case I think his mother cared for him for 20 years and that's not uncommon," she said. "What we're proposing is that the states move to a no-fault arrangement for catastrophic injury, so that people will receive lifetime care and support based on their needs and people can be confident they will receive the necessary care."
NSW and Victoria already offer no-fault schemes that are the model for a national plan. Doug Donohue, whose wife Anne suffered a catastrophic injury when she was kicked by a horse four years ago, says the financial and other assistance offered to him in NSW has been a lifeline. At 68, he cares for his wife at home in Camden and has access to nursing care seven days a week. "At Annie's level, she should be in a nursing home. But if she was, she'd die. It's the lack of attendant care. They just can't cope.
"I don't know that I'd recommend people do what I'm doing. But then again, I don't know that I would recommend they do otherwise."
Such choices are heartbreaking. In Jon Blake's case, there was almost no end to the difficulties his family faced. After his mother died in 2007, Blake's son, Dustin, faced fresh anguish: Mascot's estate had been left largely to a man she'd met in the final years of her life.
But there was a happy ending, of sorts: Dustin ended up caring for his father full-time. He was at last moved to a house properly equipped for the disabled. He was allowed out to experience the world. "He's doing good, finally," Dustin said. A few weeks later, Blake was dead. He was claimed by complications arising from pneumonia.
Leanne Clarke, who had not seen Blake for 15 years before he appeared on television just weeks before his death, was overjoyed to see the transformation – in particular, the moving moment when Dustin took his dad to a special screening of his final film, The Lighthorsemen. It was on his way home after his final day of shooting that he had his accident.
"I was so happy for him," Clarke says. "He looked so healthy . . . Dustin was doing a brilliant job looking after him. This is what I wanted for him, go to the movies, to go for walks . . . I was just happy to know that he passed away knowing how much he was loved. And now he's free from that body that entombed him. His spirit is free now."