LIFE HAD never looked better to Richard McCallum than it did one bright July morning when he stepped into an elevator in Vancouver's Medical-Dental Building.
A tall, fair, quiet-mannered men of thirty, Dick McCallum dressed and looked the part of a successful young executive. In three years of civilian life after his wartime hitch in the Air Force he had become purchasing agent of a large Vancouver electrical firm. He and his high-school sweetheart, Lorraine, had been married for five years. They were happy together and popular in their set. A few weeks before this July day they had moved into their new six-room ranch-style bungalow among the evergreens in Capilano Highlands, and the new lawn was coming up nicely.
But McCallum was happy for a better reason. It was just four days since his wife had given birth to a boy, their first child, and while they’d assured each other it wouldn’t matter, it was a boy each secretly wanted. They had decided to call him Richard, too.
The baby was born six weeks prematurely and weighed only five pounds, one ounce. He was not feeding properly and McCallum presumed that Lorraine’s obstetrician had called him to his office now to explain why this was so.
The doctor offered McCallum a cigarette and said, “You’d better sit down for this one, Dick. I have to tell you that your baby is not right.”
McCallum sat down.
The doctor began, “Ricky is what we call a Mongolian Idiot . . .”
Looking back on that moment today over a distance of three years Dick McCallum recalls only a feeling of shock and bewilderment.
“The bottom of the world fell out,” he told a friend one day recently, “but I didn’t know how to feel about it. If the doctor had said, ‘Your baby is blind,’ or ‘Your baby has a club foot’ or something like that I’d have known what it meant. I might have rationalized things. But this was beyond my grasp. I could only think, ‘God, why did it have to happen to us?’ ”
The realization that he would have to be the one to tell Lorraine helped McCallum weather the shock. He remembered then that Lorraine had been worried about the baby. The nurses in the maternity ward had suspected little Ricky was an “ill-finished child.” Because there was still an element of doubt they had kept their secret. But Lorraine seemed to have sensed something was wrong. Twice when the baby was brought to her she had taken him from his swaddling clothes to look at him. He was small and weak but he seemed perfectly formed.
“The doctor’s phrase, the medical term for it, made me imagine a little monster,” McCallum recalled, “but I knew better. Ricky looked good to me. He was what everybody calls a cute baby. We were worried about him, of course, because of the premature birth and because he wouldn’t take the breast, but we were crazy about him.”
That was the beginning for the McCallums of an excursion into one of the most bizarre and tragic regions of medical science. When Dick went to the hospital two days later to tell Lorraine, he had already found the answers to her first flood of questions. He knew that Mongoloid birth is far from rare and that Lorraine and he were not to be alone in their unhappiness.
In every thousand births two babies will be marked for an existence in which they’ll lag far behind in physique, intellect and emotions with no chance whatever to know a normal life. At the very best such children develop at only thirty percent of normal, the darkness of their lives lit only by the fact that mentally they live their lives with the innocence of children. Because so many of these children are concealed behind closed doors in homes or institutions there is no general awareness of the frequency of such births. “When we came to know more about it,” McCallum says now, “we were amazed and shocked to find it so common.”
Dick had discovered, too, that such births have nothing whatever to do with heredity. Mongolism may strike in any family, rich or poor, educated or illiterate, young or old, black or white. It may be the first child or the last or in the middle. In the majority of cases, however, the Mongoloid child is the last born of a long family of normal healthy children and to a mother over the average age. One United States study of twenty-eight hundred cases showed more than half the mothers were over thirty-five. Another survey indicated that mothers between forty-five and forty-seven produced twelve Mongoloids in one hundred births.
While the authorities all recognize this factor of an advanced maternal age there is disagreement about the cause of Mongolism. It is generally thought to be the result of some ovarian disorder which slows the growth of the baby before birth. A recent theory holds there is some shock to the fetus -—perhaps through a shortage of oxygen —about the eighth week of pregnancy.
From the moment Lorraine McCallum heard her husband’s grave account of Ricky’s fate she was determined her own sorrow and nameless dread of the future would never come between her and her love for her baby. It was a decision that probably saved her from disaster. Later they were to learn that many parents crack up physically and mentally when faced with such a sudden change in their lives. Many more become bitter and develop a psychopathic hatred toward the child.
Lorraine is a year younger than her husband. She is an attractive and vivacious woman who speaks now in an almost clinical manner about Ricky’s deficiency. “Getting emotional about it was just a luxury,” she says. “It wasn’t a case of enduring a situation but of accepting it. I determined to bring up Ricky in as normal a way as I could. We knew from the beginning that there was no hope of a cure. We never let ourselves chase rainbows. If I cried about it, I cried alone.”
From the beginning both Dick and his wife accepted this realistic approach that denies them the hope of a cure. Experimental remedial work in the field of mental deficiency has been largely confined to the field of cerebral palsy where the decreased blood supply to the brain is the apparent cause of the deficiency. In these cases—unlike the Mongoloid—the child possesses a normal mind and only his physical handicap denies him its use.
When Lorraine went home to their new bungalow Ricky remained behind in the hospital. He was there nearly four months, being fed intravenously at first, then put on a special diet to build up his strength. In their regular visits the McCallums looked anxiously for signs of deformities. They could find none.
“The day I brought him home I felt happier than I’d ever felt before,” Lorraine says. The next year was one the McCallums now regret. They decided to keep their problem a secret from their relatives and friends. It was a decision based on the knowledge that Ricky had a slim chance of survival.
Pearl Buck Told the Story
The majority of Mongoloid children die before their first birthday, perhaps mercifully. They are rarely strong enough organically to survive. Most die of heart defects. Others succumb to a variety of infectious diseases. They are particularly susceptible to respiratory diseases and seventy-five percent of those who reach the age of ten will die of tuberculosis. Mongoloid children seldom live beyond the age of fifteen and the age of forty is extremely rare. Those who do survive undergo a change that is swift and shocking. After a prolonged babyhood and infancy these “unfinished children,” at an average age of twenty, almost overnight become old people with all the symptoms of senility—baldness, wrinkles, hardening of the arteries and the rest.
“We would not admit to a feeling of shame or that we had anything to hide,” McCallum recalled, “but if Ricky was to be with us for only a short time it seemed unfair to our relatives and friends to ask them to share our problem.”
Only the baby’s grandparents were to know and Lorraine and Dick thought a good deal about how to break the news to them. One day, browsing in the public library, Dick came upon an article by Pearl Buck, in the Ladies’ Home Journal, that seemed to answer their problem. It was about the author’s daughter and it was called The Child Who Never Grew.
“The minds of retarded children are sane minds, normal except that, being arrested, the processes are slowed,” Pearl Buck had written. “When your little child is born to you not whole and sound as you had hoped, but warped and defective in mind or body or perhaps both, remember this is still your child. Remember, too, that the child has his right to life, whatever that life may be, and he has the right to happiness, which you must find for him. Be proud of your child, accept him as he is and do not heed the words and stares of those who know no better.”
It seemed to the McCallums that these words expressed perfectly the viewpoint they were striving for. That night they invited the grandparents to their home. After dinner Dick read the article to them. When he had put it down he said simply, “That’s the story of Ricky.”
That evening was important to the McCallums because they realized for the first time that it was right for them to be candid. The sympathy and understanding of these older people were their first real therapy since Ricky was born.
“We knew then that people would be tolerant and kind when they knew what it was all about,” Dick recalls. “All we had to fear was ignorance. We’d know, ourselves, what that could mean. Why, the medical terms themselves—Mongoloid, cretin, moron, imbecile, idiot—they all sound frightening and strange. We knew that our only course was to try to make people understand.”
After Ricky’s first birthday he began slowly to assume an appearance that is classic in such cases, yet the change was so subtle that his parents, with him from day to day, were almost unaware of it. Most Mongoloid children look enough alike to be sisters or brothers. “There is a little face that belongs to them all,” Lorraine puts it. They are stunted in growth, rarely reach more than five feet in height, even in adulthood. The children have long bodies with dwarfish legs and arms. Their hands and feet are small and broad with short fingers and toes. The skull is joined imperfectly at the top of the head. In facial appearance they are strangely Oriental, an effect resulting from the broad flat passive features. The nose is spread out because the bridge of bone is not developed. The cheekbones are high and conspicuous. The eyes are small and almond-shaped. It was this appearance that inspired the word “Mongoloid,” although many doctors now refer to such cases as “ill - finished” or “unfinished.”
Yet as Ricky grew into this tragic mold he was developing a personality that endeared him to his parents. Most Mongoloid children have a gift of mimicry that is highly developed and Ricky’s tricks of imitating his parents delighted them. They had read that such children occasionally have a destructive make-up and may become unmanageable, but from the beginning Ricky seemed to have a feeling for others that was touching.
“His affectionate nature won over even those of our friends who might have been uncomfortable with him,” Lorraine says. “There was a streak of stubbornness in him. Once he’d started something he was determined to finish it. But two thirds of the battle, as I sometimes thought of it, was happiness and affection.
“It’s been Ricky’s loving nature, more than anything, that has turned us against the idea of institutions. We know how much love he has to give and how much he needs. Almost every doctor and pediatrician believes the child is better off in an institution, that there’s just no place for him in a normal home. We may have to think that way, too, when the time comes. But now he needs us.”
The question of institutions arises in every home darkened by Mongolism. It is not always possible in Canada to find such refuge. Both public and private institutions have long waiting lists and it is rare for a backward child to be admitted before the age of six.
The doctors recommend this for a number of reasons. They say the child may grow physically to a semblance of adulthood with the mind of a small child and that he will be left alone and helpless should the parents die. They believe, too, that the emotional strain on normal families may cause illness or a mental breakdown. This has been the case in many such families, particularly with the mothers who must bear most of the load. Some parents, the doctors point out, have been known to sacrifice the whole family for the sake of the unfortunate child, neglecting the healthy children who, in their opinion, don’t need so much care.
Eric Made a Difference
The most important reason of all for “institutionalizing,” however, is one the McCallums faced on Aug. 12, 1950. That was the date their second son, Eric, was born. Here, too, the McCallums were following the considered advice of authorities. Most doctors believe the parents of retarded youngsters should have more children. Dick and Lorraine had read the typical advice of one medical man to the mother of an idiot boy: “Have five more children. You cannot save this one, but a few more will save the parents.”
Like his brother, little Eric is blond and blue-eyed, but he is a normal bright boy in every way and already Ricky’s mental equal.
“Having Eric wasn’t an easy decision to make,” Lorraine recalls. “We spent many and many a night talking about it until the dawn. The doctors said I had no reason to worry about the second child. It was perhaps a coldblooded way to look at it, but they said it was just a matter of odds and the odds are overwhelming against a second case of Mongolism. Of course, I did worry, as any woman would.”
The addition of Eric to the family presented a whole new outlook and in many respects the McCallums had to start from the beginning in their adjustment.
“We knew we had to think of Eric, now, just as much as we thought of Ricky,” Dick explained. “We asked ourselves how we were ever going to make Eric understand. We dreaded the day it would be necessary. Would he be ashamed of his brother? Would he be reluctant to bring his friends home, knowing they might jeer at Ricky? We thought of the inevitable things that would happen later on. We thought of Eric becoming engaged. Supposing he brought his fiancée home. Would she understand when she knew about Ricky or would she have the same ignorant fears we’d known, particularly about heredity? We knew this would be as close to Eric as it is to us and that it would surely affect his life and his chance for happiness.”
An even deeper conflict is involved in trying, to decide how much Ricky may be exposed to society. “We’re trying to be frank about it with everyone,” Dick confesses, “but I can still break into tears when I think of his future. How is he going to get along with other youngsters? We mustn’t coddle him too much, I know, but he could never protect himself in the pack. If he plays with the neighbors’ children what happens when there’s a birthday party and he’s not invited? Should we keep him here in our own back yard? And if we do that, aren’t people going to look at that high fence and say to themselves, ‘There’s a strange little child hidden there, a little boy who’s not right’? Will that be fair either to Ricky or our second boy? And we know, too, that if we hide Ricky we must to some extent hide ourselves as well.”
The MeCallums tried to solve this by taking Ricky out. These trips were bitterly disappointing.
After the experience of telling the grandparents, Dick and Lorraine began to tell other relatives (this was delayed in the case of two of Lorraine’s sisters who were having children of their own) and their close friends. Often they read Pearl Buck’s article to them. In every case when the facts were known these relatives and friends responded with understanding. “We would see a look of shock on their faces,” Lorraine recalls, “then, always, they would try to help.”
It was one such friend who encouraged Lorraine to take Ricky out for the first time. “It was the middle of last, summer and there was no relief from the heat,” Lorraine recalls. “Our friend volunteered to drive us to the beach and I thought, ‘Now is as good a chance as any to see what happens.’ When our friend called for us she said she knew just the place to go. It was an out-of-the-way spot, she said, and there’d be almost nobody there. I knew she meant to be kind. It hurt, just the same, to feel that we must be kept away from people.
“Still, as it turned out perhaps she was right. It was an awful afternoon. Ricky loved it and played in the sand, but he moves awkwardly and suddenly I knew the other people on the beach were watching him closely. I saw some children stop and nudge each other. A couple nearby pointed and whispered. My heart was breaking. I wanted to grab Ricky and run from there.”
To Buy Some New Shoes
Soon after this Lorraine tried again. “Dick had the car and so I took Ricky into town on the bus. It was his first time in the bus. It was crowded and he was a little frightened. He climbed up into my lap. I suppose that attracted people’s attention because he’s so big. I felt everyone’s eyes on us, not merely curious, but staring openly. I tried to remind myself that only three years ago I might have been guilty of this myself, without thinking. I knew that each of these people would be understanding if Ricky’s condition were familiar to them, that they’d accept it and look away as people look away from a crippled boy. But then I just felt angry. I wanted to stand up and shout, ‘Don’t stare at us!’ ”
Whenever Dick or Lorraine recall such experiences they invariably make an attempt to look on the optimistic side. One day recently Dick was describing to a friend how Lorraine had taken Ricky to buy new shoes. Looking up she had seen a couple stop to watch them. He cut off the story abruptly.
“I shouldn’t be dwelling on that kind of thing,” he said, reproaching himself. “When I see other families who have this problem I know we’re lucky. Lorraine and I sleep at night. There are many who don’t. To us Ricky is still an attractive child. In so many cases the children are grotesque and deformed.
“Ricky hasn’t needed any special care and economically we’re on sound ground. Many families with children like Ricky aren’t so well off and often have heavy bills for doctors and hospitals. We have a home of our own, but we know of families who have searched for months to rent a house because landlords won’t accept them with such a child.
“Most of all, we’re lucky that we’ve been able to work out a kind of philosophy about this. In a great many cases this sort of thing has brought a feeling of guilt and recrimination and been a kind of death sentence for the family.”
In their own home the McCallums take a pride in showing the progress Ricky is making against fearful odds. Recently they entertained an old Air Force friend of Dick’s from Montreal who hadn’t known of the McCallums’ problem. The two children were having their afternoon nap when he arrived. On learning about Ricky the friend expressed an interest in his daily life.
Lorraine said proudly that Ricky was coming along well. He plays with his younger brother, but mostly he amuses himself with his toys. He was ungainly because of his short legs and his weight, but he had learned to walk at a year and a half, which is unusual, and now, at three, he was able to navigate the stairs.
Not to Hope for too Much
He sleeps very soundly as do most Mongoloid children, has a normal appetite, is able to feed himself and —with a note of triumph —he had come the day before to Lorraine to take him to the bathroom. He understands his mother and with his gift of mimicry he is able to make her understand him. She had been able to teach him to nod his head for “yes,” but he could not learn to nod his head for “no.”
Lorraine explained to me that she had subscribed to a series of home-training lessons and that in these she could not be guided by Ricky’s real age, but by his mental age. She had taken him to the provincial Child Guidance Clinic and there, through a series of simple tests, they had decided Ricky had a mental age of eighteen months at the age of three. In the unhappy lexicon of the mentally deficient this ratio between Ricky’s real and mental age was described as “a very low moron,” but in the circumstances it was remarkably high. Roth “imbecile” and “idiot” are categories below that of “moron.”
“That must have been encouraging,” I said.
“It’s odd, but it wasn’t, and for two reasons,” Lorraine replied. “We know that if Ricky continues according to type he will never in all his life have a mental age above ten years. And so it’s only fooling ourselves to hope for too much.” She explained that the mental age of the average adult victim of Mongolism is between two and five years and that few, if any, develop beyond a mental age of ten in their lifetime. With most such children it takes ten years to accomplish what the normal child may accomplish in two years. The maximum of ability is reached at twenty but even then a vocabulary of fifty words is the highest ever known and that only after intensive training. Ry these standards Ricky was doing extremely well. It was precisely this that worried Lorraine.
“It is something that only people who have gone through this would understand,” Lorraine told me, “but the curious thing is that we don’t want him to do too well. Ricky will be better off as a lower type. Then he is less liable to be hurt by the reaction he causes or by the ridicule he’s bound to encounter. He won’t know he’s different, you see. He’ll know only his own kind of happiness in his own kind of world.”
At this point Ricky entered the room with his grandmother. He was dressed in a plaid playsuit and, prepared for the worst, I was agreeably surprised. The little boy hesitated and looked dully about the room. Then, seeing his mother, his face lit with happiness. He walked across to her and put his arms about her.
“We have a visitor, Ricky,” his mother said.
The little boy looked up at me, then walked across the room and put his arms out to me. I hugged him and then looked across to Dick and Lorraine who were smiling.
“I guess this is the only way to really understand what it means,” I said.