Born at the Right Time Page 13

  I well remember the evening of Thursday, 18 June 1987. I arrived home from the Monash Law School to find Mary vacuuming and tidying our house. If I recall correctly, she had actually decided to re-wallpaper the bathroom area, an impressive undertaking given the size of her belly. I think it was her nesting instinct kicking in. Then, around about 4 a.m. on the morning of Friday, 19 June, her contractions set in seriously after a largely uncomfortable and sleepless night. Mary’s mum, Jacq, came over and drove us to Melbourne’s Mercy Hospital.

  I had three interrelated questions in my mind about my parenting. The first question was whether I would make a warm and loving dad for our children. After all, my relationship with my father hadn’t been a good one. Of course he had suffered from post-traumatic stress disorder and alcoholism, but from my perspective he had pretty much rejected me because of my blindness. Could I overcome this rejection and give love and empathy to our children? Mary’s gentleness had enabled me to open up and to love her deeply, but could I overcome my childhood absence of paternal love?

  The second question related to being a dad with a disability. Many of us with disabilities do not have the opportunity to have relationships, to marry and to parent children. Would I be able to do a good enough job as a dad, both for Mary’s sake and for the sake of our children?

  The third question was whether any of our children would be blind or would have other disabilities. In relation to blindness, my primeval fear had no scientific basis whatsoever: I knew that my loss of sight—that is, my retrolental fibroplasia—was not congenital. Yet I did fret, especially during Mary’s first pregnancy. As for any of our children having other disabilities or accidents: well, all parents face this and other issues in pregnancy, at birth and throughout the lives of their children.

  Like many first births, it was prolonged and painful. It’s hard watching the person you love more than anything else in the world suffer the pains of childbirth. At 6.06 that evening, I held one of Mary’s shoulders, a nurse held the other, and our obstetrician used forceps to bring Gerard into the world.

  I had been convinced that Gerard was a girl, while Mary was equally sure that she was carrying a boy. (In fact she had insisted that we refer to him before his birth as ‘Arnold’.) Anyway, I think I said to the doctor, ‘Let me see her.’ The doctor gently took my hand and placed it on Gerard’s tiny genitals and I appreciated the error of my ways.

  I was delighted that our first child had come into this world with two eyes, ten fingers and ten toes. I did count each tiny finger and every little toe. Mary told me that Gerard’s eyes were wide open after the birth, no doubt pumped with adrenalin from his difficult entry into the world. We both felt that he had an extraordinary aura about him. He was a tiny brand-new ‘old soul’, if that makes any sense. Mary and I hugged and kissed, but truth be told I was a little shell-shocked by the whole experience. Later I helped a little with Gerard’s bathing, but I was still rather nervous and emotionally drained. Mary’s mum, plus Lois and family members all came in to see the new arrival. The only exception was Mary’s dad, who was away at the time. Our hospital room looked like a florist’s shop, and I lost count of the plush toys and baby clothes showered on us by family and friends.

  I went home, but at about 3 a.m. on that Saturday I woke up, pushed myself into my winter dressing-gown and sat down by our living-room gas fire. I am sure that my hormones were still jumping around as I cried tears of joy for the successful birth of Gerard, but I also wept that my mum was not able to hold this very special child or to come to know Mary.

  On reflection, I am sure that Mum’s spirit watches over us. I think that when we die, our spirits go back into the universe and that we do know what is going on with our children and grandchildren. As life moves on through the generations, however, I believe that our spirits shift from observing their direct descendants and focus more upon the wonder of human life in its entirety.

  The day after Gerard’s birth was taken up with family and friends. Mary and I didn’t have much alone time together with our new son. However, on the morning of Sunday, 21 June, I slipped in early to Mary’s hospital room and the three of us were together, alone at last. Mary put Gerard into my arms. It was a scene straight out of Charlotte Brontë’s novel Jane Eyre. After Mr Rochester is gravely injured in the fire and blind for a time, Jane Eyre forgives all and marries him. After the birth of their son, Jane puts their child into Mr Rochester’s arms.

  Having placed Gerard into my arms, Mary said, ‘Darling, here is your first-born son.’ I was totally transfixed. These days when I hug Gerard, he is a big man with broad shoulders and tight muscles. It’s hard to think back to that newborn baby who fitted snugly into both of my hands.

  Mary and Gerard came home the following Saturday, and so began our family life. Mary and Gerard loved sharing eye contact. Whenever Mary lowered Gerard into his crib, he would not take his eyes from her face, she told me. However, within a very short time Gerard realised that I had no eye contact at all. When I went to lay him in his crib, I am told he would look over his shoulder. If he thought that I wasn’t positioning him correctly, he would go rigid until I changed course for a soft landing.

  When Daniel and Kate came along, they too speedily realised that I couldn’t make eye contact with them; but they seemed to be less perturbed when I put them down, perhaps because I was surer and more confident with them.

  Being blind did not exempt me from changing nappies, and in my time I must have changed thousands of them. I remember being very nervous changing the nappies of our newborn. As they grew a little older, I recall holding down protesting toddlers with one hand while trying to change a soiled nappy with the other.

  Change tables were not for me, because I didn’t want a baby spilling off its surface onto the floor. Instead, I utilised my lateral thinking skills, which had always stood me in good stead. I found that a mat on the floor, covered by clean towels, was the best place for me to change nappies. The worst thing that could happen would be for the child to simply roll off the mat and onto the floor. Of course, after changing what were known in our household as ‘atomic bomb’ nappies, I came away with rather unclean hands.

  It was important for me to fully participate in the nurturing of our children, and Mary always supported my efforts wholeheartedly. When Gerard was about eight weeks old, Mary showed her trust in me in a very tangible way. Putting in place back-up arrangements (Lois and Jacq were on standby if I got into difficulties), she went skiing with some friends. There was plenty of Mary’s breast-milk in the fridge and I had some formula as well. I warmed the breast-milk to the right temperature and had no difficulty giving Gerard his bottles.

  By the time Mary arrived home around 7.30 p.m., I had dinner on the table and Gerard fed. I don’t know who was more fatigued—Mary after a day’s skiing so soon after giving birth, or me after my first solo day as a dad of a very small baby.

  Mary and I had different attitudes to making milk formula. Mary usually adopted what I playfully called the ‘just in time’ model. In other words, she would make up a bottle when it was needed. For me, however, if I was going to boil bottles and measure out formula, then I was going to do five or six at once. I used to make up a set of bottles early in the morning, enough to last a whole day.

  When Gerard began to take solid food, I learned how to feed him. I would place one hand on his tiny cheeks and guide the spoon into his mouth with the other. I found he was very good at helping in spoons full of chocolate custard, but less cooperative when the spoon contained vegetables. I didn’t blame little Gerard at all. Of course I sometimes made a bit of a mess, but once he was in the highchair and wearing a bib, neither Mary nor I worried overly much about the occasional spillages.

  Gerard spoke earlier than do most small ones, perhaps because he sensed this was the best way to communicate with me. One of his first words was ‘ite’, which I quickly learned was an attempt at saying ‘light’. When I made nocturnal visits to check on him and to occasion
ally change him, I didn’t worry about turning on the light. He didn’t like that. Once I realised that the light was important to Gerard, I remembered to switch it on. Another word he used was ‘door’ so that he could let me know that a closed door was looming up ahead when he was in my arms.

  I did so enjoy walking with Mary while she pushed Gerard’s stroller. In the earliest days I would sometimes walk with him in a sling on my stomach, a very special experience for me. When he was bigger, he transitioned to a backpack from where he would issue directions and wave at everyone as we passed. When I gained more confidence, I took Gerard out by myself and walked with the stroller around our neighbourhood. I think this is when he started to say ‘car’.

  I think that at first everyone in the neighbourhood had their eyes on me, especially the mums. When I was pushing Gerard’s stroller one afternoon, a nearby mum asked, ‘Does your wife know you are out with that child?’ I said yes and that everything was fine. I was very much tempted to say, ‘Oh it’s all right—we just had a bit of a domestic difference, but I’m cooling down now.’

  Mary tells me that she remembers clearly the special bond that developed between Gerard and me in those early parenting years. We both were (and remain) morning people, and we would get up and spend a couple of hours together before Mary got out of bed. When Gerard grew older, I let him watch what Mary thought were inappropriate cartoons: He-Man was a favourite (which Gerard would request with a flourish and an aggressive jump across the floor).

  I would sit Gerard on the bench as I cut and squeezed oranges for our morning juice. One day I went to pour the juice into the glass where I had placed my prosthetic eyes to soak overnight. Gerard squealed in alarm, saying, ‘Stop, Daddy, I don’t want mine with eyes in it!’

  When Gerard began to walk (he was running by twelve months), Mary noticed that he started looking for sticks or rods, which he would bang up and down on the ground. It took us a while to realise that Gerard was trying to imitate me; of course he had watched me use a white cane to navigate the world. We gave Gerard one of my broken white canes and he was as happy as Larry.

  At the time, the Premier of Victoria was John Cain and his wife was named Nancye. I used to call my cane ‘John’, so we decided that Gerard’s cane could be ‘Nancye’. Gerard said, ‘Yeah! Dancy Cane, Dancy Cane. This is my Dancy Cane.’ Mary says that it was very cute to watch the two of us head off down the street with our canes.

  In 1987, when Gerard was about one month old and I was busy learning to change his nappies, my first information-technology breakthrough took place. Mary and I purchased a device that enabled me for the first time in my life to ‘read’ back what I had written and to revise the text as I typed it.

  The device was called a Keynote Gold computer. It was laptop in size and had a keyboard, a memory and other computer functions. It is best thought of as a blind computer because it didn’t have a screen. Instead, the Keynote Gold had a synthetic speech processer, which spoke aloud the words that had been typed into its memory disc. I could type a paragraph on the Keynote Gold and then ‘read’ it back, using the speech synthesiser.

  By today’s standards, the Keynote Gold was rather primitive. After all, it could only hold eighty-four kilobytes of information, which equates to about twelve pages of text. I think that the watch I wear today probably has more memory than the Keynote did. I was able to purchase a disk drive so I could store material on disks. I also bought a dot-matrix printer, which meant that I could print out letters and articles I had typed on the Keynote.

  This computer cost Mary and me $4000. That was a lot of money in 1987, especially as we were on one income, with Mary home caring full-time for Gerard. However, Mary and I appreciated that this was just the beginning and that further information-technology inventions would liberate me from some of the handicaps of blindness.

  With one baby, and with the hope of one or two more to come, it was time for us to move from our home unit and to expand. Therefore, we sold the unit and purchased a house down the road in South Caulfield. I remember our move in December 1987. That afternoon, after everything had been sorted, Mary was inside with almost-six-month-old Gerard while I sat on the front lawn of our new place. I remember thinking that I had come a long way from my lonely domestic existence as a young teacher at Monash. Here I was with a house and garden in the suburbs, a gifted wife and a very special baby. Was this a new me?

  Before I met Mary I was a very good teacher, a writer and a minority person on the periphery of society. I was seen, even by friends, as an interesting, nice guy who did his work and didn’t worry anyone because he didn’t do the same things as most people. I’m not the only one who hasn’t been in the mainstream or who has spent time in the wilderness. So many others—such as LGBTQI people, people from different racial backgrounds, persons with disabilities, people rehabilitating from a criminal past, people who just never find anybody—struggle to be thought of as normal.

  Not only did I marry someone, I married someone who was extraordinarily clever. It gave me a certain legitimacy among my fellow workers, who now found it more difficult to say I was different.

  We began employing nannies on a casual basis in early 1988. Initially, we shared a nanny with Mary’s cousin. It was important for the economic security of our family, and of even more importance for Mary, that she return to her career. It meant that she was free to carve out time to develop her skills and complete her PhD degree, which would lead to her developing a successful career as a legal academic. Our nannies were a lot of fun, and without fail all of them loved our children.

  In June 1988, Mary suffered a miscarriage. It was a devastating experience. Our emptiness was ameliorated by the presence of twelve-month-old Gerard, who reminded us that we had a child and were a family. Until our miscarriage, like many men I suppose, I didn’t realise that these losses are common. A number of male friends commiserated with me and shared stories about when their wives had miscarried. Of course everyone asked after dear Mary, but few asked how I was feeling.

  I must admit for several weeks I felt hollow inside. My Dean did ask me if I would like some teaching relief, but I responded that it was better having something to do, and he agreed. I guess that the little girl spirit in the one we lost wasn’t yet ready to come to earth, but I am sure she will re-appear in a granddaughter or great-granddaughter.

  12

  Assistive Technology, New Futures and Painful Pasts

  Marriage to Mary and fatherhood altered my life in many profound and unexpected ways. I no longer found myself on the periphery of events. Now, holding Mary’s hand, I stood at centre stage in our society.

  However, coming a close second to these momentous happenings in its impact on my life was the computer-based assistive technology that sprang forth at this very same time. Assistive technology liberated me by enabling me to read whenever and whatever I liked. Within a few years, I found that I was among the first blind people in history for whom our lack of vision was no longer such a huge disadvantage.

  Around the time of Gerard’s first birthday, a cable was devised that would attach my Keynote Gold computer to an ordinary personal computer so as to exchange information. In those days, Keynote Gold files could not ordinarily be read by standard personal computers, but ordinary computer files could be translated into files readable by the Keynote Gold computer. Thus, this cable was important to me.

  It cost about $300. After I purchased the cable, I asked the Law School administration to reimburse me its cost. After all, the Law School had recently purchased personal computers that were available to my academic colleagues in each of their offices. Initially, my request was refused.

  Mary sat me down and said that, as a labour lawyer, didn’t I think that I was being discriminated against on the grounds of disability? After all, if my sighted colleagues could use Law School computers at no cost to themselves, surely equality meant that I should be able to obtain the connecting cable for my Keynote Gold at no cost.

 
; This was an entirely new thought for me. Of course, I did know about the laws of discrimination at work. However, in the era in which I grew up, we persons with disabilities didn’t think such laws could assist us. I believe there are parallels with the way most women thought before the women’s liberation movement gained momentum in the 1960s. As a person with a disability, I had up to now just done my thing and never complained. However, I realised that Mary had a point. I mentioned to the university administration that perhaps I was being discriminated against on grounds of my blindness. To their credit, reimbursement of the cost of the cable was arranged without further delay.

  It occurred to me that some of the senior staff in the Faculty didn’t really comprehend how computers were already altering everybody’s methods of work. They were still living in a paper-based world, where academics either dictated directly into a tape recorder or wrote their work by hand for secretaries to type. It also seemed to me that they didn’t really understand how computer-based assistive technology was already changing my life, and that soon I would be on a level playing field with my fellow academics. I guess they still thought of me as a man who worked with my tape recorders, typing my own work from memory.

  The Keynote Gold computer was of course a breakthrough; but, as I have noted, its files could not be read by an ordinary computer. Could programs be invented that would enable blind people to use ordinary computers? The answer to this question was a resounding yes. In the late 1980s and early 1990s several programs emerged that could read the DOS forms of Microsoft Word. After all, the code for putting the letters and words onto the computer screen was an electronic one. By combining these programs with speech synthesisers, what appeared on the screen of the ordinary computer could be read out in synthetic voices to the blind computer user.