Anne's memorial service
Anne died on 22nd October, 2010. Her memorial service was held on a rainy Saturday at St. Paul's Cathedral on 13th November.
We are most grateful to the Cathedral, the Dean, the Precentor (Canon Rachel McDougall), and Reverend Don Edgar, all of whom were very helpful.
The service opened with Handel's Water Music. Some of Anne's friends then spoke of Anne as a person.
Rosemary taught Anne to communicate in St. Nicholas. When Anne won her freedom, she lived with Rosemary and her partner Chris for over thirty years.
"We honour the first users of this land, and thank the current users, St.Pauls Cathedral, for allowing us to celebrate Anne’s life here today. Anne had attended a number of functions in St Pauls. She would have been proud to have her life celebrated here. It’s her last big party, and she’d be thrilled to see how many came.
Thank you all for being here, both those of you who knew Anne personally, and those who only knew her by reputation.
When I first met Anne she was 12 years old, the height of a 4-year-old but skeletally thin, writhing on the floor at St.Nicholas Hospital, a state institution for children believed to be profoundly mentally retarded. “Who’s that?” “That’s McDonald. She’ll be dead in 6 months. We can’t feed her“
No therapy, no education, no wheelchair, no toys, no clothes of your own and not enough to eat or drink - just the floor and a cot. It wasn’t much of a life, but Anne enjoyed whatever there was to enjoy. She still had her trademark grin and wicked sense of humour. This probably saved her life, because it led me to choose her for a communication project when she was 16 and weighed under 13 kilos.
Anne quickly learnt to read and to spell. Aged 18 she fought her way out of St Nicholas by winning a Supreme Court action for Habeas Corpus. She came to live with Chris and me because all the disability services had been scared off by the Health Commission and there was nowhere else for her to go. We said we’d give her 10 years, but she stayed for more than 30.
We were the winners. She was very loveable, and we loved her. Anne immeasurably enriched our lives, both by her own joy for living and by introducing us to issues, concepts and people we wouldn’t have come up against without her. Life with Anne was never dull.
Excitements included growing – 45 cm after leaving St Nicks aged 18 – a world record. Writing Annie’s Coming Out. Attending University High. Graduating from Deakin. Travelling overseas – starting small with Bali and then to a host of places. Her last round the world trip was in August. Presenting at conferences, publishing articles, speaking out on behalf of people who couldn’t. And of course, bungee jumping!
Anne’s disappointments included not developing the physical skills she’d hoped for, losing some physical control due to medication effects, and not having children. She didn’t complain about any of these, or indeed about being disabled. Of course she wasn’t perfect. The amount of villainy a quadriplegic can get up to is intrinsically limited, but she managed surprisingly well, as will become clear.
Anne’s hatred of injustice, which was her public strength, will be covered by others.
Anne’s personal strength came from her love of people. She had 4 families who loved her – her birth family, especially her sister Ros; the children she grew up with at St Nicholas, particularly Shirley and Leonie, Chris and I and our families and friends, and her carers, especially Joyce and Ray and their daughters, who called her their big sister.
Since Anne’s death tributes have been flooding in from around the world.
Professor Doug Biklen, Dean of Education at Syracuse University, wrote “Thousands of people in the U.S. and around the world … would not now be communicating were it not for Anne’s breakthrough and for her ability to teach us that not being able to speak is not the same as not having anything to say. Our lives would have been very different, much diminished.
From Canada Martha Leary, communication therapist, wrote “Anne, thank you for struggling to communicate and sharing your struggle with us all … You have changed life on earth.”
And from Washington, Bob Williams, the first communication aid user to head a government department, wrote “Farewell, Anne. Rest in Pride and the knowledge that your words and life will continue to set our people free.’
Now I am privileged to hand over Anne’s story to Philip Graves, whose words set Anne free. Without Philip’s evidence, Anne would have lost her action for Habeas Corpus, and probably died on the floor at St Nicholas."
Dr. Philip Graves
Philip gave evidence for Anne in her struggle for freedom, and remained close all her life.<!--EndFragment-->
"The 70’s were different. Back then if you didn’t speak you were assumed to be mentally retarded, and if you were mentally retarded it was considered best if you were put away somewhere, separate from family and community.
The system was flawed. It was based on assumptions that simply were not true. So when people questioned these assumptions, those people had to be suppressed or else the whole system would suffer – and that was something that couldn’t be tolerated.
Enter Anne Rosie and Chris. Rosie knew that all this was wrong, I don’t think she sees disability – just people. Chris was, like Rosie, totally selfless and already an activist. Annie had sustained severe brain injury at birth, as a result of which she had little control of any movement. She had, on the advice of her doctors, been placed in St Nicholas Hospital, just before she turned 4. As described in the language of the time, she had no speech, was unable to sit crawl or walk. As she later told us, the children of St Nicholas communicated with each other, became friends, got sick, and all too often died. Anne was one of the survivors.
This trio was not created to accept the status quo. When, on turning 18, Anne asked to leave, consulted a lawyer, the earth began to tremble.
The system was determined to defend itself.
And so they went to court. By this time I had met Rosie and had some much-needed education. I learnt about Christie Brown, Joey Deacon. Annie asked me to support her in that 1st Supreme Court Case. After some hesitation, I accepted. I said that Anne had athetoid cerebral palsy, that people with athetoid cerebral palsy were usually bright, and that I thought this was the case with Anne. My memories of the court are vivid and patchy, I remember the tension, the polarization, things we could have done better, the ineptness of the opposition, my admiration of the legal process, that last day when the Mental Health people tried to bypass the Court, and the wonderful outcome.
There was a second, gentler hearing, at which the Senior Master of the Supreme Court was asked to determine Anne’s legal competence. Anne showed her determination not to submit to having to prove herself, but after persuasion by Master Jacobs, eventually did so. For me, the highlight was the opportunity to say something about Rosie and Chris. Both had been subject to nefarious gossip about motives of selfishness and greed, and Master Jacobs, after delicately ushering Rosie out of the room, asked me to comment. I did, but it was superfluous; their integrity was already obvious to him.
It didn’t end there, of course. There were many subsequent moments, nearly all of them happy, as we celebrated Anne’s achievements over the next 30 years. St Nicholas closed in 1985, and since then most of the remaining institutions. There is still a long way to go, but the disability world is a vastly better place now than it was in the 1970’s and that is thanks to people like Anne, Rosie, and Chris. For my part I will forever be grateful to them for providing the opportunity to be part of something good.
Vicki was one of Anne's attendant carers, the people who provided services when Chris and Rosie were at work. Anne built lifelong friendships with many of her carers, visiting them at their homes, going on holidays together, and watching their children grow up.
"Anne was many things to many people, but to her carers she was just Anne.
To some of us she was a friend, a confidant always trusted with a secret, always there to listen to your troubles.
To some she was an educator of the Arts and cinema. Anne enjoyed a variety of films and found great delight in tormenting some of us with certain genres.
One in particular being horror, or the occasional chick flick.....
Sex and the City 2 comes to mind. On reflection, I think that one could very well have passed as a horror film. I do recall that was the rating Anne awarded it.
To one long-term carer, Anne (or Pocko, as she was more endearingly referred to) became a much loved member of her family.
Before embarking on a weekend adventure to the Robinson household Anne would depart from Rose Street eager, excited, and looking forward to spending a few days with her other family and their friends.
On her return to Rose St, however, she quite often appeared at the door looking a little worse for wear, exhausted and slightly hung over. Much sleep was required for the remainder of the day - all signs of yet another wicked weekend at the Robinsons.
On Sunday some of Anne’s carers both past and present gathered together at Rose St to remember and share some of our fondest memories of Anne.
We listened and laughed when told of the wild interstate trips Anne took with some of her earlier carers.
Of naked swims at a local Melbourne beach.
Of keys locked in a carers car after a night out on the town. Imagine the look of surprise on the face of the R.A.C.V man who arrived to retrieve what he thought were keys locked in a car, only to see Anne locked in the passenger's seat laughing hysterically.
I’m sure you’ve all heard of a ham sandwich. But have you heard of an Anne sandwich? That’s what you get when you take a heavily pregnant carer, Anne naked and fresh out of the bath and another slightly clumsy carer, who shall remain anonymous, who lost her footing whilst transferring Anne from bath to bed. Thus resulting in the aforementioned, Anne sandwich. Madame, of course found this most amusing and burst into uncontrollable laughter, as she so often did when confronted with an awkward or silly situation.
Anne was always up for a good time, whether it was drowning us at the local pool, shopping and cake in Sydney Rd or a drink or ten at the local pub, she pretty much always had that Mona Lisa smile upon her face.
Each of us had our own special relationship with Anne, she has been an inspiration to us all and our lives are richer for having known her. On behalf of her carers both past and present we would like to say what a privilege it has been to be part of her life and what an honour it has been to call her our friend."
We then sang "Who would true valour see" (the organist was Lachlan Redd).
The second half of the service tried to bring out Anne's role as an advocate for the desperately powerless.