When the Escalator Stopped

A Future Not Envisioned

We had decided to call our third child Christopher if it was a boy, simply because we both liked the name. He was born in the early hours of Friday, October 14, 1966, at home in our bedroom, which had a wash-hand basin in one corner, a convenience appreciated by the midwife when she arrived. We were well prepared. I helped to get the bed ready with plenty of protective newspaper covering the mattress, and timed the contractions. Mary was practiced in natural childbirth by now and in complete control, which impressed me—and the midwife—no end. She never seemed to be in pain, but was like a trained athlete in a strenuous event, concentrating, pacing herself, and saving her strength for the final push. At last I saw a child of mine born, and like everyone who has had that experience I was astonished and awed as he slithered into the world and, after the midwife snipped and sealed the umbilical cord, took a breath and began to cry. She washed him, swaddled him, and gave him to Mary to hold. When our other two children, Julia and Stephen, woke they were allowed into the room to see him; then I gave them their breakfast and took them off to their respective schools. A busy but happy weekend followed, phoning family and friends with the good news, and on Monday morning I went into the university to teach my classes. It was before the days of paternity leave.

I came home early in the afternoon and went straight upstairs to Mary and the baby. She was sitting up in bed, with Christopher asleep in a cot beside her. As soon as she saw me come smiling into the room she began to cry. I sat down on the edge of the bed and put my arm round her shoulders. “What’s the matter?” I said, already filled with dread. “It’s the baby,” she said. “The doctor came. He says the baby is a mongol.” “What does that mean?” I said. I had heard the word, and it had an unpleasant resonance, but I didn’t know what condition it referred to. Apparently the midwife had noticed something was wrong with the baby, but hadn’t told us. Instead, quite correctly, she had alerted our GP, and he had come to the house earlier that day and told Mary that our child was a mongol, and would grow up mentally and physically handicapped. Suddenly I had a flashback: a line of shambling children and youths led by an adult coming toward me on a pavement, all grinning and dribbling and twitching, and one of them clumsily banging into me as they passed. It was an image I associated with the word “mongol.” I looked at Christopher: he seemed perfect. “How can they tell?” I said. “There are signs,” Mary said. “The lines on the hands are different from normal. And they usually have slanted eyes, that’s why they’re called mongols.” “He doesn’t have slanted eyes!” I said. “No,” she said, “but he has the lines on the hands.” “What causes it?” I asked. “It happens at the moment of conception, apparently,” she said. “Nobody knows why. Dr. Evans had a cousin who was one.”

We had registered with Dr. Evans only recently and did not know him well, though he and his family were neighbors and would become friends. Like all doctors in this situation he had a difficult decision to make: whether to tell the parents immediately, or wait until they begin to have misgivings themselves about the baby. Alan Evans decided it was better to tell the truth quickly and avoid a cruel disillusionment later, and I think he was right, but he should have waited until we were both present. By talking about his cousin he was trying to domesticate the event, to convey that it was part of life, something that could happen to anyone, but it seemed that his relative was severely handicapped and the picture he conjured up had upset Mary.

Later we would learn to call Christopher’s condition Down’s syndrome, after the Victorian doctor who identified it. Down was a clever and humane man, who ran his own home for the mentally handicapped on progressive principles for many years, but unfortunately he shared the racial prejudices of his time and place. In a medical paper called “Observations on the Ethnic Classification of Idiots,” he named this particular condition “mongolism” because of the slightly Asiatic features of those born with it, thus encouraging their stigmatization as alien and ugly. The word “mongol” is no longer acceptable usage—one of the few linguistic effects of “political correctness” that I wholeheartedly approve of—but it was current for much of Christopher’s childhood. We would also learn what Dr. Down had no means of knowing, since it was not discovered till 1959, that his syndrome is caused by an extra copy (three instead of two) of the twenty-first chromosome out of the twenty-three involved in cell division in the embryo, a blip in the biological processing that causes a number of physical and mental abnormalities as the fetus develops. Nobody knows why it occurs. Mothers over thirty-five are more likely to have Down’s babies, and there is a variant of the condition that may have a hereditary element, but neither of these factors applied to Mary. In Christopher’s case it was a completely random genetic abnormality, unpredictable and unpreventable. Neither Mary nor I had any previous knowledge of it.

In fact it had never occurred to me that anything at all could be wrong or go wrong with the child in Mary’s womb. She had produced two healthy and intelligent children, and I confidently awaited a third. I knew nothing about congenital disorders or the possible causes of brain damage at birth. Such a state of blissful ignorance could hardly occur today because of several developments since then: advances in medical knowledge and practice, the large amount of information about mental and physical disability disseminated through the media, and more enlightened social policy toward those afflicted. Up to the time of Christopher’s birth, having a mentally handicapped child, especially among the middle and upper classes, was regarded as a tragedy best kept private, and often swathed in secrecy and shame. In fact Christopher was born just as attitudes toward such children were about to become more positive, but that was not evident in the information we received from people who should have known better, including a health visitor and a friend who was the wife of an eminent child psychologist. We were told that Christopher would never learn to read or write, that he had a very limited life expectancy (estimates varied from twenty to forty), and we were advised to place him as soon as possible in a hospital for the mentally handicapped. All wrong assertions and bad advice—but we weren’t to know that, and were very distressed. Those who tried to comfort and encourage us said that Down’s children were usually affectionate and lovable, which turned out to be true of Christopher, but at the time it was hard to imagine how that could compensate for all the other aspects of his condition.

For me it was a profound shock. I had supposed I was on an escalator bearing me and my family to higher and higher levels of fulfilment, pleasure, and happiness, and suddenly it had stopped, irreparably. The vague visions I had entertained of the future did not include looking after a mentally handicapped child. The first days and weeks after the event were very hard to bear for Mary and me: having to keep up a cheerful front for the sake of Julia and Stephen, who were delighted with their baby brother, having to break the news to parents, friends, and colleagues, and having to live with being the object of so much concern, sympathy, and pity in response. I went to work on the day after we learned the truth about Christopher, and my first tutorial group came in looking solemn and subdued. Someone—I guessed it was my colleague Michael Green, whom I had spoken to by phone—had told them, with the best of intentions, of our misfortune. Ironically the subject of the tutorial was Tristram Shandy, with its Rabelaisian humor about conception and childbirth, and the discussion was constrained. A few days later the disaster at the Welsh mining village of Aberfan occurred, when a waterlogged colliery tip suddenly collapsed and engulfed the school in an avalanche of slurry, killing 116 children and 28 adults. The horror and pity that gripped the whole nation for many days somehow merged with our own private sorrow and added to my gloom.

In those early days it crossed my mind, as I suppose it does with many people in such a situation, that it would be a blessing if the child died peacefully and painlessly, but there was no prospect of that. He was in essential respects a healthy baby, and although he had difficulty taking sustenance from the breast or bottle, he began to put on weight when Mary started feeding him with a spoon. Dr. Evans had put us in touch with a pediatrician who offered to arrange a visit to a Birmingham hospital for the mentally handicapped. Mary was reluctant but I thought we should at least see what it had to offer, so we went by appointment. When the staff discovered we had not already made up our minds to place Christopher there they refused to show us round the wards, which was enough for both of us to decide firmly against this option. From then on we were united in a determination to give Christopher as normal a life as was possible without a detrimental effect on his brother and sister, or on our own relationship. Inevitably the main burden of this project fell on Mary, especially in Christopher’s early years, but it was greatly assisted by the fact that he was our youngest child, always stimulated by interaction with his older siblings, and never disheartened by being overtaken by one younger than himself.

In one respect Christopher caused a positive improvement in our marriage. As practicing Catholics we had followed the church’s teaching on birth control, and produced three unplanned children in six years. Not long after Christopher was born, Mary decided to go on the Pill, without any prompting from me but with my unhesitating agreement. Suddenly it seemed a very simple decision. Random though the extra copy of chromosome twenty-one was, mothers who gave birth to a Down’s baby were more likely to have another, and the effort of bringing up one was going to be demanding enough. We made a simple pragmatic decision, but it was enormously significant: we took responsibility for our own lives, instead of being governed by a code invented by theologians that looked increasingly irrational and had no demonstrable basis in the teachings of Jesus Christ. I’m sure we would have made this decision eventually anyway, but Christopher gave us the impetus to act without further delay, to the great enhancement of our intimate life. This is not to say that my peace of mind was unaffected by his advent. Henceforward I became more prone to anxiety when confronted with unexpected events and difficult decisions.

 

THE SUMMER AFTER Christopher’s birth we received a letter from the local health authority asking if we would be willing to take part in an experiment that a child psychologist, Rex Brinkworth, was conducting into improving the learning abilities of Down’s children. We replied promptly in the affirmative and were soon visited by a slightly built, soft-spoken man with a moustache and an unpretentious manner that nevertheless inspired immediate confidence. He explained that in collaboration with a doctor in Northern Ireland he had developed a program for maximizing the potential of Down’s children by stimulating them in infancy. It was based on the little-known fact that the human brain continues to develop after birth, so it was possible in this period to teach them to respond to their environment in ways that normal children learn unaided. This made immediate sense—it revealed in a flash the folly and inhumanity of consigning such infants to a hospital where they would get a minimum of stimulation and thus confirm the pessimistic prognosis assigned to them—and we waited eagerly to learn more. The snag was that Brinkworth had already assembled a group of children on whom to test his latest program, and was looking for some to form a control group who would not take part but would be tested periodically for purposes of comparison. Naturally we said we wanted Christopher to be part of the experiment, not the control group, and after some discussion Rex agreed to help and advise us outside the experiment. He examined and played with Christopher, and encouraged us by praising his responsiveness, remarking that we must have intuitively applied the principles of his own system in several ways, so we had not lost too much time by being ignorant of it. Before he departed that day he gave us a copy of the schedule of exercises and activities he had designed, and he left us feeling immeasurably more hopeful about Christopher’s future. Here at last was a knowledgeable person telling us how to do something positive for him instead of merely accepting him.

Christopher turned out to be a very rewarding child to bring up, with a distinctive personality that charmed most people who met him—confident, affectionate, and, for someone with Down’s, remarkably articulate—even witty. Inevitably most of the necessary effort was made by Mary, especially in the early years, but he bonded strongly with me and I shared the satisfaction we felt later, when he learned not only to read and write, but also to use public transport, to make speeches at family celebrations, to beat me routinely at pool, to carve beautiful wooden bowls on a carpenter’s lathe, and to paint pictures that people would buy. His life was not to be without problems and anxieties, for him and for us, but it has been mostly a happy and (given his limitations) a fulfilled one. For that we owe a lot to meeting Rex Brinkworth at the right moment. Rex had been motivated to develop his ideas about improving Down’s children by having one himself, his daughter Françoise. The short book he wrote with his collaborator Dr. Joseph Collins, first published in 1969, and subsequently revised and reissued many times as Improving Babies with Down’s Syndrome, has been of enormous help to many parents. He founded the Down’s Babies Association in Birmingham, which subsequently became a nation-wide charity known as the Down Syndrome Association, based in London, and he was awarded an MBE, the least public recognition he deserved for his contribution to society. He died in 1998.

Chris grew up at home with us in Birmingham, attending excellent state special schools, and later a college of further education offering courses for students with moderate learning difficulty. At the age of twenty-one he went to live in a community run by a charity for adults in this category, located in Ironbridge, Shropshire, about an hour’s journey from our home. There he has acquired a variety of skills, notably woodwork and painting. (Some of his paintings can be seen on the website of Heart and Sold, an organization which displays and sells work by Down’s artists (www.heartandsold.org.uk). He lives in a house with six other residents who have a good deal of independence but are supervised by trained staff. He is very attached to his family, and comes home every fourth weekend and for longer seasonal holidays. Like many Down’s people, he looks much younger than his age. It is hard to believe that he will be fifty this year.

This essay has been adapted from Quite a Good Time to Be Born: A Memoir 1935-1975, published in Britain by Harvill Secker. Reproduced with permission of Curtis Brown Group Ltd, London, on behalf of David Lodge. © David Lodge 2015.

Published in the March 25, 2016 issue: 

David Lodge is a novelist and critic. Among his novels are Changing Places, Nice Work, and Author, Author. His most recent work, a memoir, is Quite a Good Time To Be Born (Harvil Secker).

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