Image: Barbara Moore and her sister, Anne. [with permission]
Born to an Irish-Australian family in the northern Melbourne suburb of Reservoir, Barbara Moore contracted in early infancy a virulent form of infantile rheumatoid arthritis, which went undiagnosed until she was nine. At this stage she was immobilised for ten weeks in a plaster cast, which effectively stole from her much of her remaining mobility. Despite shocking chronic pain, Barbara completed high school and began studies in law at RMIT in the early 1970s, performing well enough there to gain entry to study Law at the University of Melbourne. She persisted with her application, responding with a fiercely defiant stare to the interviewing professor’s question as to whether she thought she had a right to deprive a fine young man of a place. She loved those student years, especially revelling in the companionship and conviviality she found as a resident at St Mary’s College.
After graduation, having gained solid to good honours grades in many subjects, Barbara worked in the Auditor General’s office and later in the Freedom of Information office. While she could still manage limited walking, she drove a car to her city-based work and began to pay off her own town house, her courage and persistence having brought down barriers like her bank manager’s reluctance to offer a loan to a single disabled woman.
In the early 1990s, as her mobility became further reduced through the chronic rheumatoid arthritis, Barbara decided to retire from the Law to devote herself to writing. She enrolled in a Graduate Diploma in Professional Writing at RMIT, where she received an award for her outstanding work. One of her stories about her friendship with an old German priest was made into a superb short documentary film by a graduate filmmaking student. Barbara completed her graduate diploma amassing lots of distinctions for work produced across the genres.
Barbara began writing educational children’s books. Four of these were published by Pearsons, and translated into many languages. She told me, her eyes sparkling with mirth, that her children’s books sold well in Korea and that she was ‘hot in Siberia’.
During this time her condition had worsened to the degree that she had to give up independent living and move into a select retirement home, in which she had her own apartment and wheelchair access to a beautiful neighbouring park. She also was an inveterate poet, ranging from witty, light and nonsense verse to metaphysical conceits of considerable accomplishment. She loved the haiku form, and held workshops for fellow residents.
Master of Arts
It was from here that she enquired about the possibility of doing a Master of Arts by Research in Creative Writing with us at the University of Melbourne in the then Department of English. Initially Barbara didn’t proceed at first, because she was no longer able to type for herself. When the Disability Services Unit offered accommodations in the form of technical and carer’s support, she was delighted to embark on the Master’s the following year. After two years of study, Barbara was awarded the Fay Marle Scholarship, which helped her enormously and gave her a great boost of encouragement.
I agreed to drive out to Balwyn for Barbara’s supervisory sessions once a month, when Barbara’s health made this possible. I was shocked and moved to meet this diminutive woman whose body was severely affected by chronic rheumatoid arthritis. Visible joints were fiercely red, swollen, and twisted. Despite pain always 8/10 and often at 9/10, she was never was able to take painkillers, due to her severe allergies. Yet, here she was, in her cropped auburn hair, brightly dressed in funky earrings and striped stockings, brimming with intelligence and wit, ready to get the maximum out of our 2-3 hour sessions, which always began with a cappuccino and cake for Barbara.
Her project for her Masters thesis, entitled ‘The Art of Being a Tortoise: Life in the Slow Lane’, is an episodic, acutely vivid, at times heart-breaking, but often hilarious disability memoir. Although Barbara did not think the memoir was as polished as she might have liked, I know that what I read was pretty much ready to go, and I believe that Barbara has written at least another 10,000 words since then. The pace was frustratingly slow for both of us, and held up by Barbara’s frequent hospital stays due to accident and infection; however, I thoroughly enjoyed working with her, because of the sheer courage, tenacity and wickedly irreverent sense of humour she always exhibited. It would be hard to find a more fiercely funny feminist socialist than this incredibly spirited woman.
Fighting to Finish the Thesis
A week before Barbara passed away, when she mouthed to me that she was in fact dying, I promised her that I would do this in consultation with her sister Anne Duggan, herself a graduate of Melbourne. Barbara nodded her consent and thanks. It also meant a lot to her niece, Frances Overton, an undergraduate in the School of Education, who has worked devotedly at Barbara’s side every weekend, typing to Barbara’s dictation.
It was only in May that Barbara went into rapid deterioration necessitating what we thought would be respite care for a while, to try to deal with her nausea, reactive depression and acute discomfort. Tragically, it became apparent that something more radical was wrong; the wheelchair was not even an occasional option any more and she lost weight rapidly, alarming for one already so fragile.
Immobilised and isolated over these weeks, Barbara’s great hope was to receive the contract for her book of poetry from Pan Macmillan, that her publisher, Jenny Zimmer, had promised back in March. I assured Barbara that I would telephone Jenny to see what was happening. It was quickly apparent that while Jenny was serious about wanting to publish the work, the global economic downturn had put question marks over the budget. Jenny suggested that a possible subsidy from the University of Melbourne might help. I promised to enquire, knowing that in theory this was only available for staff. Nevertheless Allison Dutke was wonderful making enquiries and paving the way for a possible extenuating-circumstances application. However, I received no reply to phone calls and emails from Pan Macmillan over these weeks and was reluctant to return to the Arcadia nursing home in Essendon with such a bleak tidings. I eventually steeled myself to do so, feeling that I had let Barbara down dreadfully.
It was immediately evident on my last visit that Barbara, who could no longer eat or speak, had little time remaining. I left her bedside vowing to her that I’d do my best to see her poetry published, her Master’s submitted and if possible published as well. On receipt of my urgent email Jenny Zimmer was fantastic and flew into action, despite the budget problems, expediting a contract. Barbara received the news with a smile of great relief and was able to hear congratulations from all the nursing staff. The book, illustrated by Barbara’s Concierge artist friend, Roma McLaughlin, will be launched here in Melbourne before Christmas.
I have just been re-reading some of Barbara’s thesis and her voice is utterly alive across these pages. I am grateful to have had the friendship and inspiration from this extraordinarily courageous, funny and highly creative woman. I am also deeply grateful for the way everyone at the University of Melbourne, from Jessica Rose of the School of C&C, Mathilde Lochert the Manager of C&C, to Matthew Brett of the DSU, and Allison Dutka, who all showed extraordinary patience and sensitivity to Barbara’s predicaments and her ‘life in the slow lane’. I dearly hope that her published work will be an enduring testimony not just to this woman’s brilliance, but also to the immense support that her efforts attracted at the University of Melbourne.
Excerpts from Barbara Moore’s memoir, The Art of Being a Tortoise: Life in the Slow Lane
The difference between Tortoise Boys and Tortoise Girls.
Tortoises are very slow. It takes them much longer to do things and find out things. But they make excellent spies!
I’d just had my 12th birthday.
“What is the difference between boys and girls?”
Sitting around our huge cedar wood table in our kitchen, I sat looking out the window at fluttering, leaves falling out of the branches, blowing in September winds.
From uncomfortable silence descended all around me. Uncomfortable, shifting in chairs – no eyes met mine.
Oh Oh, I’ve done it again.
For a while, nothing happened. Then Mum gets up and walks to the bookshelf. Is the answer here on the bookshelf? If only I’d known? I’d have looked for it myself, secretly, of course.
But Mum knows everything.
There are lots of books on the shelf all different colours and all different shapes. But for me, with my arms, shoulders, elbows, back, legs, hands and fingers all sore and in the wrong places, I don’t like big, heavy, books. And Mum chose a big heavy book, dark blue. There are a few exactly the same size and shape — a set of encyclopaedias for children. They are fun to look at and have all sorts of things in them. Big surprises in these books.
Anyway Mum chose one and brought in to me. She looked at it for a long time. Then, she opened it at a page in the middle. I couldn’t wait to see the answer to my question.
A large glossy black and white photo of cherubs. I looked at the photo for a long time.
“Ah,” I said.
Again, I looked, hoping to find a clue. Unfortunately, I couldn’t. “Ah,” I said to Mum, faking my new understanding of the difference between boys and girls as she closed the book.
Back to sipping tea.
To prepare us three girls for the journey from girls to women, Mum gave us all a secret book to read, secretly. It was quite an old book with well-thumbed pages about to collapse. I read it, and it was all about sheep.
Again, I desperately searched in the book for answers to my questions, but no luck. And I still didn’t know the difference between boys and girls.
But there is one person who might know — a very special person, Gay my biggest sister. She’s cutting-edge cool and she knows absolutely everything, like Mum, and she won the Van Baur prize for English Literature, whatever that means, whatever that is. And she’s always reading, the latest books at the moment, she’s reading ‘Lady Chatterley’s Lover’ by D.H. Lawrence which was banned, so that’s even better because it’ll have the difference between boys and girls for sure!
So, I planned my secret quest for some time. I wanted to be like Violette Szabo, parachuting into France with her lethal pill issued to all spies of the French Resistance. I would have been a brilliant spy. There is no way in the whole world that you can extract information from me, even various forms of torture!
So, I chose a time when I knew Gabrielle would be out. Gay read for hours and hours in her room, her garden and all over —different parts of the house. No one in the world could beat this record. When she went out one day I snuck in to her room and found a book — Lady Chatterley’s Lover and opened it for the first time ever.
Finally, I had the chance to find the answers and I read and read several pages. All about some gardener and a big garden and lots of red berries and white berries totally nothing — no answer at all. I finished reading it but I still didn’t know the difference between boys and girls.
Gabrielle and Anne had told me all sorts of funny stories about certain nuns at our school, who talked about “these things”.
When I reached Form 4, I had the same teacher. One morning, while we were studying the subject Religion she stood before us, her face contorted with panic and anxiety.
“Girls, I’m afraid I’m going to have to talk to you about some shocking things. Now girls, you mustn’t talk about these things or think or look at these things. To do any of these, is a mortal sin and you will end up in Hell forever.”
Ah! No we thought trying to suppress giggles.
One giggle would have meant instant expulsion from our school and straight in to Hell — a ghastly fate.
Luckily, we were well practised at suppression to survive.
I couldn’t imagine what she meant. Did it mean going to the toilet or thinking about toilets or looking at yourself in the mirror? Endless speculation produced no answers.
Boys! Forget it. Not that any were interested in me or my body.
So, I tried to be very good and not think about anything just to be safe.
And now, I still don’t know the difference between tortoise boys and tortoise girls.
Perhaps one day, I might find the answer to the riddle of life — the difference between tortoise boys and tortoise girls.
The Art of Never Giving Up or
The Medical Exam You Expect to Fail is the One You Pass
Just as tortoises, are about to give up, something happens which changes their lives forever.
Here is a curious logic. Just because you fail five medical exams does not mean you will fail them all.
After a year of surgery in England followed by a year to recover, I decided I wanted to work.
“Work,” said my doctor. “Why?”
“To develop myself and make a contribution,” I said doubtfully.
“Whatever for? Why don’t you just stay on the pension. It’s much easier.”
“It’s not my idea of fun and I want to be a vicious lawyer pacing the corridors of power and harassing people.”
He looked at me as if I were deluded.
In my enthusiasm, I’d forgotten two things. First, there would be an entrance exam. I was afraid I’d fail the IQ test. Anything to do with words would be OK. But having to fill in missing sequential numbers – forget it. Secondly, there would be another medical exam. The thought of these things almost stopped me from going any further. I couldn’t bear to face another rejection. On the other hand, I had developed an almost cavalier attitude to disaster and failure through necessity. I started playing with the odds. I had a ninety-nine out of one hundred percent chance to not get the job. But what of the one percent?
After waiting many months, I sat for the intelligence test. Much to my surprise, I passed. They must have missed signs of my numerical hopelessness. Not long after, I was asked to attend a medical examination in the Victorian Superannuation Board to assess my ability to work. The doctor greeted me and showed me into her office. She was a woman in her sixties and she looked me up and down. Perhaps she had already failed me I thought to myself. I felt like saying let’s not waste your time anymore. Just let me know quickly and I’ll be out the door. She came over to me and asked for my medical history which I gave trying to make it sound like there was hardly anything wrong with me.
“Now, we’re going to do some tests,” she said. Then she took my arm.
“Can you move this?”
“Can you move your neck?”
“Can you move your legs?”
“Can you move anything?”
“Can you write?”
“Yes. I can write.”
Surely that’s all you need to get a job in the public service. To be able to write and talk. She finished examining me and went back to her desk, peering at me over her glasses.
“I’m afraid that you have less than ten percent mobility. The rules specify that anyone with less than ten percent mobility is not fit to work in the public service. You are supposed to be examined by another doctor. He’s just down the corridor. Do you really think that you could handle the work?”
“Yes. If I can get through law school, I can get through anything,” I said.
“I’ve got a plan. I can see that although you do not have any movement in your limbs, you are able to compensate in other ways. I really believe that you should be given a chance. The main problem is getting past the other doctor. Just a minute, I’ll see if he’s in.” She went down the corridor and disappeared for a while. Then she came back into the room looking very happy.
“By the way, you are a Catholic aren’t you!”
“You are a Catholic aren’t you? I can tell by where you went to school. Our Lady must be looking after you. He’s not there.”
“Who’s not there?”
“The doctor. If he’s not there, I can’t get him to authorise this so I’ll just have to do it myself. Between you and me, you would not pass but I’m sure you will make the most of it and I wish you a long and happy career in the public service.”
She scribbled out the necessary paperwork. I was so surprised I felt like saying do you think you have made a mistake but I didn’t want to wait around long enough to find out the answer.
Every working day of my life I was grateful to this woman who had the generosity of spirit and vision to see much more than others had seen and to actually expect things from me.
And if the other doctor had been there that day, what path would my life have taken?
Through the Window
Hotel Sofitel far above Melbourne, elevator – if you can find it, takes you soaring up higher and higher to Cafe Lá on the 30 billionth floor of Hotel Sofitel leaving your stomach way behind at ground level. […]
And through these windows, something stands out – one building, which sends shivers down my spine – still.
Top of Collins Street – what we always call the Paris end, evoking Paris. Melbourne bluestone steps; impossible to climb, then and now.
Musty shiny endless, corridors; endless rooms, shaky lifts.
Burrowed within these walls, Melbourne’s top doctors, surgeons, consultants, and specialists, behind leather pedestal desks and spectacles on their noses, through which they peer.
I can’t even sit in a chair, because my joints are in all the wrong places; that just do and scream with pain and I keep getting stuck over and over again.
Each doctor I am taken to see stares at me, without looking at me.
My Mum and dad are told that the doctors do not know what is wrong with me, but I will live no longer than eight years old – whatever it is I’ve got!
They shrug their shoulders, “Take her home – there’s nothing we can do!” One of the doctors places in my tiny, twisted hand a shilling. His eyes are kind.
Through his window then, I see far away in the distance two multicoloured dots, my two big sisters sitting in the lush green grass of Treasury Gardens; something I could never do. They are waiting, always waiting.
And so, I refuse to eat forever. My body weighs three stone when I am six years old and continues to be that weight until I am twelve years old. My ribs stick out.
“You’ll never grow any higher than four foot eight,” says one doctor when I am fifteen “and also, you will never have any secondary sex characteristics” – whatever they were.
Something deep down inside of me says I will prove you wrong forever. Even the secondary whatever those too! Most definitely!
At seventeen, after unexpectedly being admitted to read law at the University of Melbourne, no one was more shocked than I!
I lived in St Mary’s College for four years. Each night, the Loreto nuns gave me a huge porcelain jug of milk which I carried with great difficulty, because of my hands. Later, I shared it with my ever increasing friends for life, friends for the first time in my life.
All this milk must have gone into my legs, because as each year passed I grew a tiny bit.
I loved eating breakfast in their dining room. Cornflakes drenched in milk and sugar; eggs, bacon and tomato; lashings of thick toast which we made ourselves lathered in marmalade and butter; and cutting edge coffee. I thought I was so cool drinking coffee. We all sat there in the morning gazing out the window half awake, exhausted, but deliriously happy for the first time in my life. Had I landed in heaven?
For lunch, we had ham salads or casseroles and for dinner, dressed in our black academic gowns which made us look very learned, we thought, we were served soup, “flat meat” which were roast dinners cut thinly, minute steak.
Undoubtedly, the highlight of the week was trifle for dessert. Filled with alcohol this sensational conglomeration of ingredients was enough to send us deliriously drunk racing down the corridor, for me metaphorical racing, pretending to be superman.
At home, we had a wall where my father wrote measurements for each child. Gay had reached five foot six; Anne had reached five foot five and I had only reached four foot eight.
So at twenty-one years old on my birthday, I asked if I could be measured. My height was now five foot five.
Milk and love and kindness and laughter made me do the impossible – yet again.
Through this window now, of the magnificent Sofitel, I am celebrating special moments in life, surrounded by friends. How far have I climbed?
[tortoise image is courtesy of Joachim S. Müller on flickr and a Creative Commons licence.]