When no natural cause is found, the search turns inward.
Surprisingly many people seem to believe there is nothing accidental about the birth of a physically or mentally handicapped child. Some see this misfortune as a God-sent punishment for a secret sin that the parents have stubbornly refused to confess. I have heard it too frequently to be amazed any longer when parents tell me their friend or neighbor has urged them to “repent, so God can forgive you and heal your child.” Other people, by contrast, may attempt to comfort hurting parents by stating, “God only sends exceptional children to exceptional parents.” Or, if compassionate words escape them, they may elect to send a “poem” such as the following, of which my wife and I received several copies after the diagnosis 14 years ago of retardation in our son. Far from comforting, however, it only added to our sense of hurt and bewilderment because many more questions were raised than answered by it.
A meeting was held quite far from earth.
“It’s time again for another birth,”
The angels said to the Lord above.
“This dear little child will need much love;
His progress on earth may be quite slow;
Accomplishments great he may not show,
And he will require some extra care
From the folks he meets on earth down there.
He may never run or laugh or play;
His thoughts may seem odd and far away.
In various ways he won’t adapt,
And he will be known as handicapped.
Please, Lord, find some parents for this child
Who’ll do this work as unto You.
They’ll not understand it right away,
The difficult role You have them play;
But with this dear child sent from above
Comes strength and new faith and richer love.
And soon they’ll know the privilege given
To care for this gift that’s straight from heaven.
This precious young charge so meek and mild
Will always remain Your Special Child.”
Besides violating biblical teachings under the guise of poetic license—nowhere is such a meeting described, nor does Scripture permit us to assume handicapped children come to us from a different place or through a different process than normal children—the poem abuses parents at the very time they suffer what may easily be the most traumatic experience of their life.
The reality is that this child will not necessarily be meek and mild. While some are, others are hyperactive or destructive. Without previous training, ordinary parents are suddenly thrown into the bewildering role of therapist, but they cannot go home after eight hours or remain emotionally unaffected. Nor will their faith be magically renewed through this struggle. To be sure, it can be, since God has promised his grace will be sufficient (Deut. 33:25; 2 Cor. 12:9). But the reality is that most parents will long wrestle with the agonizing Why? of it all, like Job who at first did not see God’s behind-the-scene involvement. Unable to reconcile the awful happening with what they thought was God’s beneficent providential rule, they are afraid now—lest they be hurt more—to entertain hope that out of the calamity good will yet be created, especially when the truth sears into their consciousness that this handicap has no cure. In time there may well come a brilliant morning of renewed and transformed faith, but meanwhile there is the long and bitter night of weeping.
It may start with the brusque manner in which the tragic news is too often broken. Too often the diagnosis is simply dropped like a bomb into the lap of the unsuspecting parents, frequently the mother alone, since she is more likely the one to take the child for professional help. One mother told me how her doctor said just a few hours after delivery, “Your child is retarded and she’ll never amount to anything; why don’t you put her away.” Then he walked out and was not available for several days. This unprofessional behavior told these parents they were not worthy of the doctor’s time and their problem was insignificant. But what was perhaps to him a common experience was new and terrifying to the parents. Predictably, the father’s reaction was, “There isn’t any man I hate like that man.” While perhaps there is no painless way to break bad news, the availability of adequate information will do much to avert fears and the overwhelming sense of shame.
Parents must hear that this tragedy is no reflection upon their worth. They need to know that. After hearing the diagnosis, most parents move through predictable stages of disbelief and shock, anger and guilt. Searching for a cause is a natural reaction to a tragic occurrence. Misfortune must have a source, a real genesis that can be identified and either conquered or yielded to. Often parents illogically blame each other for bringing defective genes into the marriage, as though anyone has control over his genes. The mother may attempt to recall each incident of her pregnancy that has possibly triggered her child’s handicap.
When no natural cause can be discovered, the search tends to turn inward. Both parents may be so conditioned to the theory that punishment always follows bad behavior that instinctively they assume their child’s affliction to be punishment for a past sin, even when they cannot identify any transgression grave enough to warrant so horrible a consequence. Sometimes it is less painful to assume undeserved responsibility than to live with the frustration of unanswered questions. I have yet to meet the parents, however, who thought themselves privileged or blessed by their child’s handicap. Normally, the feeling of having been cursed is far stronger. Frequently parents tell of their compelling desire to run away or die so they can escape the stigma of having produced this defective child.
Because our culture emphasizes success, beauty, and knowledge, parents of the handicapped commonly harbor a deep sense of failure. Dr. Sol Gordon has written that the man who sires healthy sons and daughters and the woman who bears them are traditionally considered virile or feminine and a credit to the human race. The handicapped child, then, is considered proof of his parents’ inferiority. More likely to stand out conspicuously from the crowd than to be outstanding, he is frequently in subtle or harsh ways rejected and always must prove himself. Understandably, parents sometimes feel the compulsion to explain or excuse the child or apologize for his handicap when they sense the discomfort of their peers and interpret it to mean that they themselves have failed as cocreators, that they have disappointed God and society. It becomes tempting to avoid crowds, including those in church, or at least leave the child at home. Understandable also is the feeling of resentment and jealousy that is virtually inescapable when parents compare their child with the normal children of others. Because the situation will never change, parents live with what some have called “chronic sorrow,” which so easily leads to depression, illustrating again the truth that “hope deferred makes the heart sick” (Prov. 13:12).
Though parents of the handicapped initially seem to share an almost universal reluctance to face their acquaintances, sensitive friends and understanding relatives are perhaps the best agents to lessen their struggle by providing nonjudgmental support and encouragement and by accepting the child with joy. The extended family and circle of friends may well itself grieve over the impaired child. Sharing, then, and honest expression of feelings and faith can be immensely helpful to all. Mothers of handicapped children—and fathers as well—feel pride when others take an interest in their child and rejoice over his progress, slow though it may be. But they feel pain when others ignore their child, or don’t know what to say. And it hurts to be in a group where the accomplishments of children are compared, accomplishments not matched by one’s own child.
It may help to share with parents one’s conviction that this handicapped child is as much God’s child as a normal one. The repeated references in Genesis 1 that plants, animals, and even people reproduce “after their kind” can be immensely reassuring. This child is not a demon (Luther), or a menace (Goddard), or even an “angel unaware” (Dale Evans Rogers), but a true human being created in God’s image. As the Bible tells us frequently, God has a very special concern for little people (Matt. 18:1–14), and particularly for people who are handicapped, whether blind (Matt. 20:30–34), deaf (Matt. 11:5), paralyzed (Luke 5:18–20), or speech-impaired (Mark 7:32–35). I find it of supreme significance that the guests at the banquet referred to in Luke 14:15–21 turn out to be handicapped.
It is difficult to predict the impact of a child’s handicap on his parents’ faith. Research suggests it can lead to a weakened faith as easily as to greater strength. Inevitably, the struggle and pain lead to a challenged and changed view of God and his dealings with the world. Pastors and church workers should realize that an apparently strong faith and deeply-rooted religious habits are great assets, but no guarantee that parents will escape the feelings of depreciation, failure, and shame. Christians do not necessarily react differently or better than non-Christians to the reality of their child’s handicap, for they are as sensitive to pain as anyone. Only when that pain subsides somewhat can theological and philosophical questions be considered. Even then, a more positive response is by no means guaranteed. A professional working at a Christian facility for the retarded told me that less than one-fourth of all residents had any contact with their (Christian) families. The other three-fourths were abandoned and forgotten. This percentage is exactly the same as it is for the public institution where I work. Much as I dislike that situation, I would nevertheless fault neither faith nor feeling. What would we do?
Faith, I would suggest, may well intensify the process of adjustment. It may be theologically correct to say that God makes no mistakes, but this is hardly comforting to parents who are just now coming to grips with the agony of knowing that a beloved child is crippled, deaf, or retarded. If God made no mistake, then who did? And if nobody made a mistake, then why did this defect occur? There must be a cause. It is not too helpful, either, for parents to hear, “This is God’s will; it is all part of God’s wonderful plan for your life.” If it is because of God’s love that my child is handicapped, so a parent may reason, surely it would be far better were I loved less and the child healthy.
The struggle is similar to that of the believer par excellence, Job. While first, numbed by shock and grief, he mumbles the expected words, “The Lord has given, the Lord has taken away, blessed be the name of the Lord,” questioning starts soon afterward. Far from being the stoic and patient figure often upheld as the Christian ideal, he searches for meaning in the irrational events that turned his life upside down. Caught up in the same stereotyped notions as his contemporaries that suffering is caused by sin, he examines himself and reaches the conclusion God expressed earlier: he is a man blameless and upright. Out of that conviction arises the courage to question and probe and challenge traditional thinking, to confront even God. It is a healthy activity, for by giving vent to his fears and his feelings, by openly expressing that something is badly out of joint, he grows in faith and understanding, even, at last, in his ability to accept what happened.
Like Job’s friends then, fellow believers today are not always aware of the inner torment that may be hidden behind a mask of seeming courage and acceptance and, consequently, provide insufficient emotional and spiritual support. Or they are too easily shocked when parents, perhaps after an initial silence, voice their doubts and anguish even to the point of questioning God. But why should parents like what happened to their child or accept it as normal? Why should they not complain? Their anguish is not a matter of loving their child more than their God, but simply a human reaction to the painful intrusion of evil into their life. Unless parents are permitted to express these feelings, they are unlikely ever to reach the point where they can fully accept their child and express their love for him, or where they will honestly testify to a greater and warmer faith.
Counselors and comforters should bear in mind that on their part better by far than criticism, and pastorally more beneficial, would be temporary silence as a humble admission that some questions have no answers, and that a troubled heart must be allowed time to regain its tranquility. It remains most telling that Job felt the need to reject his three friends—whose quiet presence presumably had comforted him the first week—as “miserable comforters” only when they began to utter pious and critical platitudes from the safety of their own untouched position. The worst possible accusation to direct toward parents—and yet one frequently made—is that their child is afflicted because of flaws in their faith or conduct. Who would not immediately feel the urge to respond with an impassioned plea of self-justification? But out of such forms of destructive dialogue come barriers, not the bridges that make consolation and healing possible. It is most imperative to proceed with great caution. Set apart through this tragedy, instinctively withdrawing from others, struggling with the tedious, logistical problems of braces or diapers or pills or the right school, parents perhaps feel only obstacles and little love. So easily they reason that, because they feel no love, therefore they are not loved. Jean Vanier has wisely reminded us, “One has to begin with wounded people by living with them.… We tend to forget that the basis of life is mutual confidence, mutual respect, deep love and acceptance. Once people have this, they can begin to grow with the professional help they need.”
Growth indeed is possible. Many parents gain through this trial a deeper sensitivity to, and greater awareness of, suffering as it is present in our society. That is not to say they needed this insight, and that is why trouble came. It is merely a rewarding consequence. They may also develop greater confidence in their own value as persons. But, just as their lifestyle is irrevocably changed, so their faith may have become more casual about religious practices while more deeply committed to redefined principles. Looking back, they can perhaps identify positive good that has resulted from their child’s handicap. But they would unhesitatingly exchange all that for wholeness for their child. Acceptance of their child’s handicap does not mean the struggle is over. Time and again new crises will arise to trigger once more the cycle of grief and guilt and doubt. Moving into a new community means repeating the adjustment process. Parents wonder about the future. Where will the child live or work, what will happen when the parents are dead? Will the church continue to care? Just as scars remain, after the wounds and stitches of successful surgery are gone, so parents will always have a sensitive spot in their soul. They may not ever conquer that, but they will have learned to cope with their child’s handicap.
Coping is easiest in a supportive environment. Pastors can give leadership by interpreting to their parishioners the nature of handicaps and the needs of the handicapped and their families. Superstitious stereotypes must be exposed for what they are: fantasies arising out of fear. Parents should as a matter of course be able to expect from their church equal treatment for all their children. Courts have repeatedly affirmed the rights of the handicapped: a right to education, a right of access to public buildings, a right to humane and decent living conditions. Though court decisions are perhaps not yet legally binding on churches, they surely make moral obligations inescapable.
A handicap should in itself be no reason to deny anyone participation in worship services or the sacraments. In the case of the mentally retarded, even the most elementary knowledge of religious truth should be considered sufficient, in keeping with Jesus’ words (Matt. 18:2–6, 10, 14; 19:14), or Paul’s (Rom. 10:9). Mental limitations, moreover, should spur churches even more into making available specific religious instruction geared to a child’s ability. The mentally or physically handicapped are neither automatically saved nor lost. Like anyone else they must be led to Christ. This involvement of the church with the child, along with such practical help as sitter services at home, financial help with the often high medical bills, young people taking the handicapped person to a park—in short, providing whatever help needed—will more than anything else convince the parents that they belong with their child to a loving, caring, supportive fellowship. With joy will they realize they are not different, or inferior.
Great blessings often flow from the presence of a handicapped child in a family or a church or a, community. They are detectable, however, only within an atmosphere of love, within a household of faith where it is an established truth that even the weakest member has something to contribute to the body of Christ.
G. Douglas Young is founder and president of the Institute of Holy Land Studies in Jerusalem. He has lived there since 1963.
