In October Annie McDonald was perched in her wheelchair in the spring sunshine at a favourite haunt, the beer garden at the Peacock Hotel in Northcote. It was a gorgeous afternoon, she was sipping Kahlua and milk and was in a reflective mood, as she had been of late.
On that October Thursday, she asked Joyce Robinson, one of her coterie of loyal carers over the past 30years, what impact she had had on her life. What had Joyce learnt from their friendship?
She spelt the question out on her letterboard, with Joyce’s help - a painstaking process, despite their years of practice. ‘‘What haven’t I learnt from you, Annie?’’ was her friend’s response. ‘‘I learnt never to take life for granted.’’
The next day Annie had a heart attack at home in Brunswick, and within hours she was dead, at 49. A week on, her presence in the house is still strong, and the two people who shared it with her for 30 years have that shell-shocked aura of the suddenly bereaved.
Since she came to live with them in 1979, the rhythms of life for Rosemary Crossley and Chris Borthwick turned around Annie and her 24-hours-a-day needs. Now they bump around the house like dancers who have lost their place, looking for a cue on what to do next.
Many will recall the story of Annie’s Coming Out, as recounted in the book she wrote with Rosemary and the movie Chris co-scripted.
Annie was the tiny girl with severe cerebral palsy, institutionalised since three, whose intellect was assumed to be as dysfunctional as her body until, with Rosemary’s help, she persuaded the Supreme Court she had the wit and maturity to decide her future.
It was a huge story. When Rosemary cradled 18-year-old Annie - then the size of a five-year-old and weighing just 16kilograms - and helped her fight violent spasms and guide her hand to spell out her wishes, who was really speaking? ‘‘It was like the Lindy Chamberlain case,’’ recalls one old friend. ‘‘Everyone had an opinion.’’ The notion of intelligent life trapped in such a body distressed, and for many, including some of Annie’s family, beggared belief.
The court released Annie from St Nicholas’ Hospital - ‘‘hell’’, she called it - and she went home with Rosemary and Chris. There the book ended, but not Annie’s story. What happened next spills through the colourful rooms of their house.
After years of choking - and starving - on spoonfed hospital rations, in this house Annie ate and ate. She grew 45 centimetres after age 18 and her weight quadrupled. She lay on a trampoline in the back garden, listening to music. She floated in the bath. She studied - her Higher School Certificate, then university, earning a Bachelor of Humanities. She went clubbing with her carers.
She became an outspoken advocate on human rights - ‘‘if we keep babies alive, we have to give them a life worth living’’. The New Yorker once sent a reporter to interview her over a stoush with moral philosopher Peter Singer - who became a friend - in regard to the rights of the profoundly disabled.
In Annie’s bedroom her wheelchair now sits empty in the corner, and her alphabet board lies mute on the waterbed. These were the instruments of her autonomy. With them she could travel the world and speak her mind, though they could never give her independence - her unco-operative body would not allow it.
Clues to her personality abound. Stacks of DVDs - Mad Men, Gunslinger Girl, Arrested Development. Movies - her favourite director was John Sayles, her favourite film Matewan. CDs ranging from Tom Waits to Wagner. Mona Lisa smiles are everywhere - Leonardo da Vinci’s lady is on postcards, she’s smiling from a biscuit barrel, she’s even adorning a rubber bath toy. On her Facebook page, Annie’s face and smile adorn a wheelchair-bound Mona Lisa.
‘‘It started as a joke. She had been reading John Berger on different ways of seeing, and the objectification of the Mona Lisa,’’ Rosemary explains. ‘‘Soon everyone was bringing her Mona Lisa.’’
She had recently acquired an iPad. She would compose book and film reviews on it to share with friends - and images of cupcakes. ‘‘I made you a cake,’’ her electronic voice says.
The sitting room table is covered with travel diaries. ‘‘Annie Does Europe - 1998’’. There she is in New York (seeing Placido Domingo singing at the Met was a highlight of her life), in Barcelona, in London, reverse bungy jumping in New Zealand. ‘‘She still had such a lot of things planned, such a lot of living to do,’’ Rosemary says. ‘‘Bugger.’’
The laptop rings and Rosemary answers. It’s Annie’s best friend Kate, who has cerebral palsy and no speech. She and Annie ‘‘skyped’’ constantly, and Kate’s flat, electronic voice broadcasts grief from Leeds. ‘‘They say life goes on,’’ she tells Rosie. ‘‘Yes, Kate, but there’s a big hole in it.’’
Kate’s communication skills were nurtured by her mother, who read Annie’s Coming Out after the diagnosis on her newborn daughter - Kate, like Annie, was injured by a traumatic birth. ‘‘Kate calls Annie ‘our’ Nelson Mandela,’’ Chris says. ‘‘In their world, she was.’’
Annie may have objected to this turn in the eulogising. When she accepted an award celebrating her achievements in Canberra in 2008, she noted that ‘‘the worst thing about being an inspiration is that you have to be perfect. I am a normal person with only normal courage.’’
Despite what the Supreme Court ruled about her capacities and her intellect, Annie was frequently challenged by friends and strangers and she didn’t always endure it well.
Vicky Barker, another long-time carer, recalls being at a pub with Annie when a young woman, worse for drink, tried to test her out. Vicky was sent out of earshot when Annie was asked a question, then brought back to help spell out the answer. ‘‘She spelt out the answer correctly.
And at the end of it, she said, ‘Now f--- off’.’’ The pub went into uproar, and the challenger slunk away.
‘‘She never complained about being disabled. Not ever,’’ says Rosemary. ‘‘It was her reality ... She had a rotten hand, but she played it as best she could. She would have liked to have had a sex life, and have had children, but she couldn’t have either. She made up for it by time with other people’s children.
‘‘There were moments when it was tough,’’ she says of the past 30 years. ‘‘The carers, they stayed because they loved Annie. They enjoyed being with her.’’
‘‘It just becomes part of your life, doesn’t it?’’ she says to Chris. ‘‘Now we’re just looking at each other going, ‘What on earth are we going to do?’’’
Saturday, November 6, 2010
Australian disability advocate Annie McDonald, who wrote about the importance of living in the community, dies
The Age in Australia. Here's info about the book Annie's Coming Out, which was made into a film.
Posted by BA Haller at 11:35 AM