So by this most sorrowful way I was compelled to tread, I learned respect and reverence for every human mind. It was my child who taught me to understand so clearly that all people are equal in their humanity and that all have the same human rights. None is to be considered less, as a human being, than any other, and each must be given his place and his safety in the world. I might never have learned this in any other way. I might have gone on in the arrogance of my own intolerance for those less able than myself. My child taught me humanity.
My child taught me to know, too, that mind is not all of the human creature. Though she cannot speak to me clearly, there are other ways in which she communicates. She has an extraordinary integrity of character. She seems to sense deception and she will not tolerate it. She is a child of great purity. She will not tolerate habits that are filthy and her sense of dignity is complete. No one may take liberties with her person. Neither will she endure cruelty. If a child in her cottage screams she hurries to see why, and if the child is being struck by another child or if an attendant is too harsh, she cries aloud and goes in search of the housemother. She has been known to push away the offending one. She will not endure injustice. An attendant, laughing, said to me one day, “We have to treat her fairly or she makes more trouble for us.”
What I am trying to say is that there is a whole personality not concerned with the mind, and children mentally deficient often compensate for their lack by other qualities of goodness.
This is a very important fact and it has been so recognized. Psychologists working with mentally retarded children at The Training School in Vineland, New Jersey, have found that while I.Q. may be very low indeed a child actually may function a good deal higher because of his social sense, his feeling of how he ought to behave, his pride, his kindness, his wish to be liked. Acting upon this observation, they developed the Social Maturity Scale, to complement the Binet Scale earlier brought from France and adapted for use in the United States. What is true of the retarded child is also true of the normal one. A high intelligence may be a curse to society, as it has often been, useless it is accompanied by qualities of character which provide social maturity, and the less brilliant child who has these qualities is a better citizen and often achieves more individually than the high intelligence without them.
Today this Vineland Social Maturity Scale is very widely used in the armed forces, in schools and colleges, in aptitude tests, wherever normal individuals are measured. We have to thank the helpless children for teaching us that mere intelligence is not enough.
They have taught us much more. They have taught us how people learn. The minds of retarded children are sane minds, normal except that, being arrested, the processes are slowed. But they learn in the same ways that the normal minds do, repeated many more times. Psychologists, observing the slower processes, have been able to discover, exactly as though in a slow-motion picture, the way the human creature acquires new knowledge and new habits. Our educational techniques for normal children have been vastly improved by what the retarded children have taught us.
In the years which have passed since I led my child into her own world, again and again I have been able to find comfort in the fact that her life, with others, has been of use in enlarging the whole body of our knowledge. When one has learned how to live with inescapable sorrow, one learns, too, how to find comfort by the way.
When I speak of comfort I think now of other parents than myself. I think of those who bring me their children and ask what to do for them. Almost the first question they ask is, “Are private schools and institutions so much better than the state ones that we ought to make all the family sacrifice to the utmost for the sake of one?”
My answer is this: A good private school is usually better than the average state institution. There is less crowding and more individual attention. But even this depends somewhat upon the state. There are states where the institutions are remarkably good, the employees well paid, a pension system established and every inducement offered for good people to say. There are other states where the institutions are medieval. Parents must examine their own state institutions. Where there are ample family funds, a good private institution has advantages. Yet the weakness in most institutions is that often they do not continue beyond the lifetime of the person who establishes them. Some of the finest and most elaborate private institutions will close when the head dies, and the children then must be scattered and must make their adjustments all over again. It is essential in choosing your child’s home that you find an institution which is not dependent upon any one man, but which is controlled by a self-perpetuating board of trustees and has endowments to carry it through the hard years. The state institutions have, of course, an immense advantage in that they are permanent, and once a child enters he is secure for life.
I answer the parents by saying that where a private institution would bring severe sacrifice on every member of the family for the sake of one, I would find a good state institution, even if I had to move my home to another state, and there I would put my child.
When the child is safely in his new home, what are the further responsibilities of the parent? They are many. The child needs the parents as much as before. There should be regular visits, as frequent as possible. Do not think that the children do not know. I have to endure heartbreaking moments every time I go to visit my child, for inevitably some other little child comes and takes my hand and leans against me and asks, “Where is my mamma?”
The housemother whispers over her head, “Poor little thing, her folks never come to see her. Her grandmother came to see her two years ago and that’s the last.”
The little thing’s heart is slowly breaking. For these children are always children. They are loving and affectionate and they crave to be loved exactly as all children do. There are other children who come to tell me, eyes glowing, “My daddy and mommy came last week to see me!” Even the ones who cannot speak will come to show me a new doll that the parents brought.
Ah, they know, because they feel! The mind seems to have very little to do with the capacity to feel.
Another responsibility of the parent is to watch always the person in direct charge of the child. I said that I chose my child’s permanent home by finding as the head the sort of person whom I could trust. Today, were I to choose again, I would also go into every cottage and look at the type of attendant there. Were they the hard-faced professional type, the ones who go from institution to institution, callous, cruel, ready to strike a child who does not conform, I would reject that place. For the most important person in an institution, so far as the child is concerned, and therefore so far as the parent is concerned, is not the executive, and not the man or woman in the offices, not even the doctor and the psychologist and the teacher, but the attendant, the person who has the direct care of the child.
A cruel and selfish attendant who has not at heart the welfare of the child can undo all the work of the teacher and the psychologist. Your child cannot benefit by any teaching unless he is happy in his daily life in his cottage. The attendant must be a person of affectionate and invincibly kind nature, child loving, able to discipline without physical force, in control because the children love him or her. Whether this attendant is well educated is not important. He must understand children, for he has in his care perpetual children.
Any sign of cruelty or injustice or carelessness on the part of attendants should be at once reported by conscientious parents. Do not think that secret bribes or tips will protect your child from a bad attendant. He will take your money and when he is alone with the children, as he is so much of the time, he will treat your child exactly as he does the others.
A third responsibility which the parent has to the child in the institution is to see that the atmosphere in which he lives is one of hopefulness. I have observed that this atmosphere is best in those institutions which carry on research as one of their functions. A place where the care is merely custodial is apt to degenerate into som
ething routine and dead. No child ought to be merely something to be cared for and preserved from harm. His life, however simple, means something. He has something to contribute, even though he is helpless. There are reasons for his condition, causes which may be discovered. If he himself cannot be cured or even changed, others may be born whole because of what he has been able to teach, all unknowingly.
The Training School at Vineland is an excellent example of what I mean. For many years it has maintained an active research department. As I said, it was the first institution in this country to use and adapt the Binet test, and there the Social Maturity Scale was developed. Its work with birth-injured children and cerebral palsy has been notable, and the vigorous men and woman who have spent their lives there learning from the children, in order that they may know better how to prevent and to cure, have infused vitality into the life of the institution, and into the whole subject of mental deficiency beyond.
Parents may find comfort, I say, in knowing that their children are not useless, but that their lives, limited as they are, are of great potential value to the human race. We learn as much from sorrow as from joy, as much from illness as from health, from handicap as from advantage—and indeed perhaps more. Not out of fullness has the human soul always reached its highest, but often out of deprivation. This is not to say that sorrow is better than happiness, illness than health, poverty than richness. Had I been given the choice, I would a thousand times over have chosen to have my child sound and whole, a normal woman today, living a woman’s life. I miss eternally the person she cannot be. I am not resigned and never will be. Resignation is something still and dead, an inactive acceptance that bears no fruit. On the contrary, I rebel against the unknown fate that fell upon her somewhere and stopped her growth. Such things ought not to be, and because it has happened to me and because I know what this sorrow is I devote myself and my child to the work of doing all we can to prevent such suffering for others.
There is one little boy in my child’s school whom I often go to see. He is little because he is only about seven in his mind. His body now is almost forty years old. He has a grave face and there is a forlorn look in his eyes. His father is a famous man, wealthy and well known. But he never comes to see his son. The boy’s mother is dead. When someone approached this father for a gift for a new kind of research he banged his desk with his fist and said, “I will not give one cent! All my money is going to normal people.”
Callous? He is not callous. His heart is bleeding, his pride is broken. His son is an imbecile—his son! In these years he has thought of himself and his loss, and he has missed the joy he might have had in his child—not the joy he sought, of course, but joy for all that.
There is another father—they are not always fathers, either—whose boy loves to work with the cows. I see the lad sometimes, a handsome fellow. He is usually in the dairy barn, caring for the cows, brushing them clean, loving them. I saw his father there one day, that brilliant able man, and he said, “It does seem that if my boy can learn to use the milking machine he could learn to do something better.”
The head happened to be there that day and he said, “But there is nothing better for him, don’t you see? The best thing in the world for each of us is that which we can best do, because it gives us the feeling of being useful. That’s happiness.”
So what I would say to parents is something I have learned through the years and it took me long to learn it, and I am still learning. When your little child is born to you not whole and sound as you had hoped, but warped and defective in body or mind 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. This child has a meaning for you and for all children. You will find a joy you cannot now suspect in fulfilling his life for and with him. Lift up your head and go your appointed way.
I speak as one who knows.
Yet none of us lives in the past, if we are still alive ourselves. It is inevitable that, as young parents in their time experience again the old agony and despair when their children are among those who can never grow, they demand some cause for hope. Other ills have been cured and research is being carried on for those we still do not know how to heal. All must be healed, of course. People must not die of cancer or polio or heart disease. Neither should they be mentally deficient if it can be prevented or cured. There cannot be a choice of which will be first. The battle of life must be fought on all fronts at the same time.
Therefore, I say, we must also fight for the right of our children to be born sound and whole. There must not be children who cannot grow. Year by year their number must be decreased until preventable causes of mental deficiency are prevented. The need is more pressing than the public knows. Our state institutions are dangerously overcrowded and unless research is hastened, millions of dollars must go into more institutions. Even if boarding homes are multiplied, care of these children must be paid for, in the vast majority of cases, by public funds. How much wiser and more hopeful it would be to pay for scientific research which would make such care unnecessary! Let us remember that more than half of the mentally deficient in this country are so from noninherited causes, and these causes can be prevented, did we know what they are.1
Present care, moreover, is very inadequate. State institutions are able to provide very little of the education that might release a good many of the children to normal, if protected, life. It is not possible to do much educating with an overworked staff in an overcrowded institution. In some states the higher positions in these institutions are still political plums, and the lives of the children are at the mercy of a succession of ignorant men. Private institutions, if they are good ones, are too expensive for the average family.
Yet I believe that the private institution has an indispensable place in our American system. Our notable scientific advance has been the result of private persons working in privately owned places. Public funds have developed very little scientific knowledge except for military purposes. So now I believe that research into this most necessary field, the study of the causes and cure of mental deficiency, must, in accordance with American tradition, take place in small private institutions where scientists can work in freedom. Such research should be co-ordinated so there will be no time wasted in duplication.
Something, of course, has already been done. I have spoken of the notable work of the Research Department at The Training School in Vineland, New Jersey. We know that at least 50 per cent of the mentally deficient children now in the United States can be educated to be productive members of society. Education alone would relieve our overcrowded public institutions. Studies have shown that there are nineteen types of jobs that can be done by an adult whose mentality is no more than that of a six-year-old child. Twenty per cent of all work in the United States is done by the unskilled worker.
We know, too, some of the reasons for injury to the brain, both prenatal and postnatal, but we do not know enough. A little physical remedial work is being done for the injured brains which are the chief causes of mental deficiency, but it is still experimental and confined largely to the limited though important field of cerebral palsy, where the decreased blood supply to the brain is the apparent cause for mental deficiency.2 Results are still too new to be relied upon, but in one institution they were reported as hopeful: 34 per cent of those operated upon showed definite mental improvement, an additional 51 per cent showed changes for the better in alertness, muscular control, interest span, appetite and increased irritability.
I speak of all this merely as grounds for hope, if and when research really begins in the causes and cure for mental deficiency on a scale comparable to that now being done in other fields. Hope is essential for activity.
Those who have children who can never grow—and few are the families who have not one somewhere�
�must and will work with renewed effort when they realize that more than half the children now mentally deficient need not have been so. They must and will work still harder when they realize that more than half now mentally deficient can, with proper education and environment, live and work in normal society, instead of being idle in inadequate institutions.
Hope brings comfort. What has been need not forever continue to be so. It is too late for some of our children, but if their plight can make people realize how unnecessary much of the tragedy is, their lives, thwarted as they are, will not have been meaningless.
Again, I speak as one who knows.
1[At present, the number of cases of mental retardation caused by inherited factors is not known. According to The ARC, over 350 causes have been identified, but in 75 percent of the cases, the cause of a child’s mental retardation is not known. It is undeniable, however, that the leading cause of mental retardation today—maternal abuse of alcohol or drugs—is preventable.]
2 [Today it is known that cerebral palsy can be caused by many types of injuries to the brain before birth, during birth, or shortly after birth. Decreased blood supply is only one possible cause of brain injury.]
Afterword
Janice C. Walsh1
I REMEMBER THE DAY, in the summer of 1972, when my mother made her last visit to see Carol. She had asked me to drive her down to the school, and my younger sister, Jean, also accompanied us. My mother wanted Carol to get reacquainted with both of us, as she knew that she might not be able to visit again. She was beginning to feel the effects of the lung cancer that was shortly to be diagnosed.
The Child Who Never Grew (nonfiction) Page 8