Psychological Needs of the Handicapped Child
Isabelle Wagner Taylor
The handicapped child is first of all a child and only secondarily a child with a handicap. His basic needs are the same as those of a normal child, whether he is blind, deaf, mentally retarded or crippled. The handicapped child is not a different kind of person or of a different species, as many people used to think. But his needs are sometimes difficult to satisfy just because he has a handicap, and special help may be required in satisfying them.
Physical needs for food, clothing, and shelter are more obvious than psychological needs, but the fact that the latter are intangible makes them no less important in the child's development.
Love and Acceptance
The first and most fundamental psychological need is for love and acceptance. One must first be liked and accepted by others, especially by one's parents in order to be able to like and accept others. A healthy self-concept depends on this acceptance.
It is often harder for parents to love and accept a deformed or defective child than a normal youngster. There are many possible explanations: the handicapped child in a way reflects less credit on his parents; they may feel that he places a stigma on his family by indicating inferior heredity or "bad blood." There may be resentment because of the extra care and inconvenience and expense caused by the child. The parents may be disappointed because they cannot fulfill through him their own unsatisfied ambitions, or because the child cannot duplicate their own past achievements, like the cerebral palsied son of a father who had been a famous professional football player, or the polio-crippled daughter of a woman who recalled her own beauty and popularity as an adolescent. Sometimes parents simply fear having a child who is different from other children.
Strangely enough, there persists the Old Testament concept of a wrathful God who takes vengeance on sinful persons or their families by inflicting the punishment of a handicap-many perhaps interpret literally the Biblical quotation in which God says, "For I the Lord thy God am a jealous God, visiting the iniquity of the fathers upon the children unto the third and fourth generation of them that hate me." In fact, one of the first things the parent may say when discovering that the child has a handicap is, "What have I done to deserve this?" Those adhering to the Buddhist faith believe that a handicap represents a punishment for misdeeds performed in a previous incarnation. Other parents believe that the child's handicap is a form of bad luck, or the result of an unfortunate pattern of planetary positions at the moment of the child's birth. It is true that some parents may feel the handicapped child is a "child of God," specially blessed and able to bring good luck to his family, as some Philippine families believe, but this more favourable point of view occurs much less frequently.
The handicapped child is more likely to be abandoned than the normal child. For example, the Mother Superior at the Canossa School for Blind Girls in Hong Kong has pointed out that blind children are more frequently discarded than siblings with normal sight, and if there is both a blind boy and a blind girl in a family, the blind girl may be abandoned while the blind boy stays in the family. Placing a child in an institution can also be a form of abandonment if its purpose is chiefly to get the child "out of sight, out of mind." Institutionalization was formerly recommended in a routine and rather offhand fashion by medical experts, though in the U.S.A. and other western countries today it is considered very important to preserve the child's home ties and his identification with his family. Abandonment is sometimes implicit as when the parents avoid the child by sending him to a residential school and to summer camps; and then rarely visiting him or writing to him.
Even when children are kept in the family, they may be abused or neglected. In the U.S.A. one finds increasing comment on what is called "the battered child syndrome," referring to the hundreds of cases that yearly come to the attention of social agencies, of children who have been beaten, burned, and cruelly mistreated in other ways. But there are also less obvious kinds of rejection in the home, such as ignoring or delaying the satisfaction of the child's physical needs by not feeding him on time, or being excessively strict and demanding, punishing the child severely for minor mishaps or infractions of rules, constantly scolding and finding fault with him, and keeping him from doing the things he wants to do such as tying him to a chair instead of letting him crawl around. Still subtler forms of rejection can be covered by a veneer of politeness and concern, even sometimes by oversolicitude and over-protection, when the parent is trying to hide from himself and others the guilty awareness of his secret resentful and hostile feelings toward a handicapped son or daughter.
The child, however, always knows the true feelings of his parents. Sometimes the teacher or social worker or therapist or physician can help the parents to understand their own feelings, and come to accept the child lovingly. This kind of parent education is of tremendous importance.
The Parent Problem
The child also needs to be accepted by those around him. A boy or girl may be loved by the family and yet called unflattering nicknames by peers which focus attention on a defect such as Limpy, Slobber, Dopey, Monster, or Fatso. Children are not naturally cruel as many adults claim, but can be very understanding and helpful if adults set a good example. Other parents may present a problem, as reported by a couple with a mentally retarded boy and normal girl, when these youngsters went to visit the children living next door, their parents let the girl in but shut the door in the boy's face. Now the boy's parents have told the other couple that either both children must be admitted or else neither of them may enter the other home.
Sometimes it is easier for parents to get others to accept and respect their child when the handicap is an obvious physical one like a leg shortened by polio than when the defect is one of mental retardation. A couple in Curitiba, Brazil, who have a mongoloid nine-year-old daughter and a normal twelve-year-old son, report that many people they invited into their home to see their children would deliberately wait until they knew the children would be in bed so that they would not have to see the girl Maria. In spite of this, the parents insist on bringing her up within the family, in a normal relationship with her brother, rather than commit her to an institution as many people have urged them to do. Another couple in Montevideo, Uruguay, face the same problem of lack of understanding on the part of others because they too insist on rearing their mongoloid daughter with their four normal sons. Vigorous parental reaction to public rejection may lead to constructive solutions as in the case of a Karachi father of a mongoloid boy who started a day school for mentally retarded children which his son now attends.
Many adults do show a revulsion for the sight of physical deformity. When plans were made to establish a school for severely physically handicapped children in a high-income Long Island community in the U.S.A., parents objected strenuously to the idea that they and their children might have to look at physically defective children near at hand.
Patterns of Acceptance and Rejection
Certain patterns of acceptance and rejection are found to be similar in a number of countries. For example, the blind and the deaf in every country have been the first objects of public concern and special provisions, and only much later has attention been turned to the needs of the crippled or orthopedically handicapped. Most recently, the cerebral palsied and the mentally retarded have been given special help, largely through the efforts of vigorous, active parent associations. In Asia, in contrast to European countries and the United States, leprosy still constitutes a serious problem; in Korea the non-infected children of leprous parents are not permitted to attend the regular schools, for they would not be accepted by teachers or classmates or the parents of the other children. In India some progress is being made in placing such noninfected children, or those no longer infectious, in public classrooms, and in Singapore this integration is proceeding quietly and continuously. But even in countries like the U.S.A. where the problem of leprosy is almost nonexistent, other groups of the handicapped may still lack acceptance. This is true of those with epilepsy, since there is widespread reluctance to accept children with epilepsy in regular classrooms, and many parents feel ashamed and fearful when their child is diagnosed as having epileptic tendencies.
Public acceptance and understanding mean ultimately that each individual needs to look into his own heart to see what his true feelings are: Does he really respect the handicapped child as an individual human being? Or does he harbour deep, unresolved feelings of disgust or annoyance or superiority? Being a teacher or a physical therapist, for example, does not guarantee respect for and acceptance of a child as a person. Nicknames that make fun of handicaps must be avoided, as well as jokes about handicapped people, and inaccurate stereotypes of them in movies, stage and television plays, advertisements, and novels. Negative attitudes are sometimes changed by stressing the achievements of handicapped persons such as a blind Milton, a deaf Beethoven, a blind and deaf Helen Keller, and a polio-stricken President Roosevelt. Publicizing the fact that handicaps can be found in any family, whatever its educational or social level, also helps. President Kennedy's open discussion of his mentally retarded sister and Vice-President Humphrey's references to his mentally retarded granddaughter tend to produce more positive attitudes toward children with below-normal mental capacity. Ignorance is often the basis of prejudice. The public needs more information about various kinds of handicaps, such as leprosy and epilepsy. Sometimes the morbid or distorted curiosity of the general public can be changed to enlightened understanding by giving them a chance to satisfy this curiosity in a normal way. For example, in a high school assembly programme, a speaker with an artificial leg displayed many prosthetic devices and let the youngsters examine and ask questions about the prostheses.
Adventure and Exploration
A second need is for adventure and a chance to explore the world. Curiosity is a normal impulse, and an essential basis for learning. But the handicapped child usually has fewer opportunities to explore the world on his own, to crawl and run and taste and touch freely. His experiences must be planned and contrived for him to a greater extent than for normal children, and as a result his life may become so highly organized that he feels he has no room for independent action. He is in danger sometimes of being over-protected to the point that the world seems to him like a fearful, hostile place which he can never face by himself. Preoccupied with protecting the child from physical harm, the parent or teacher may deprive him of challenge, and the normal stress that is an incentive for growth and self-improvement. The child may also be so pampered and waited upon that he becomes a petty tyrant, demanding and expecting constant service, or he may become hopelessly dependent on the assistance of others. It is desirable to provide him with chances for moving out into the world around him-going on excursions, such as to see a parade or a football game, going to the theatre or to a museum, having the experience of a week or two at a summer camp. He must also be helped to discover the wonderful world of books and ideas and the treasures of the past in the schoolroom, for the wings of his imagination can take the handicapped child to many places where his physical body may never go.
The development of the child's mental capacity depends on the stimulation he finds in his environment. The term "stimulus hunger" is now used when describing the apathy and slow development of many institutionalised children as compared with those placed in good foster homes or growing up in their own homes. Experiments indicate that even the pattern of slow development expected of the mentally retarded may be altered by providing them with a maximally stimulating environment, as indicated by a study undertaken by Mrs. Eloisa de Lorenzo, principal of a school for the mentally retarded in Montevideo, Uruguay. Working closely with the parents of a mongoloid baby brought to her preschool clinic, she was delighted to find that this child learned to walk at the age of one year, and was normal in other aspects of his development. It will be interesting to watch the future development of this youngster.
Another need is for rebellion. This may seem a strange thing to say when rebelling often appears to be what children do most frequently. But to test himself, to discover himself in relation to others, the child needs at times to be able to disobey and to be negative. Yet the handicapped child often cannot run away from the parent or teacher, he cannot deliberately ignore them, he cannot safely express his anger, and so he becomes full of pent-up frustration. When a teacher sharply reproved a cerebral palsied boy for yelling epithets at another boy, he replied, "But teacher, the only way I can fight is with my tongue!" So it is necessary to respond patiently and with understanding to the youngster's occasional sullen moods and negative behaviour, realizing that as for the normal child this is a necessary part of his growth.
Limits of Freedom
At the same time, there is a need that may seem contradictory, the need for limits. To truly enjoy freedom, one must experience some limits to that freedom. The mild frustrations imposed by loving discipline during childhood in the home and classroom prepare the child for accepting the more serious frustrations he will later experience living as an adult in a social group. It is no kindness to a child always to let him have his own way, eat whatever he wants to eat, stay up as late as he wants to or be constantly rude or annoying or selfish. Of course, one cannot expect him to be an angel, but he should be expected to abide by certain reasonable regulations that are part of social living. As a matter of fact, no matter how much the child grumbles or cries about these regulations he secretly wants them and needs them to give order and security to his world, to help him understand what society considers right and wrong, good and bad, and also to convince him that adults really care about him. Sometimes grownups, with a mistaken sense of pity for the handicapped child, over-indulge him, and therefore lead him to expect everyone else to make special concessions for him, which they will not and cannot do. The parent, and teacher and therapist and doctor and even the persons who help to feed and dress the child must understand what the rules are that he is expected to abide by, and enforce them uniformly.
There is a need for friends and social experience. This has been an unmet need for many handicapped children, such as a cerebral palsied child or a mentally retarded child of whom some parents still feel ashamed, and hide in a back bedroom away from other people.
An example is Karen, a girl with congenitally deformed legs and arms, who had never been out of her family's fourth-floor walk-up apartment in Brooklyn before she was admitted to a day school for severely physically handicapped children, the Human Resources School established a few years ago at Albertson, Long Island. Her parents bad hidden her in a corner of one room, where she sat constantly in a Buddha-like position, developing further hip contractures and foot deformities as a result. Now as she rides daily to and from school in a special bus, follows a normal secondary-school curriculum, and takes pan in school social activities, she has rapidly caught up with her classmates and is living a normal life for the first time. For many of her friends, as for her, a field trip to the Metropolitan Museum or a party at the school represented the first glimpse they had had of the richness and variety to be found in life.
To grow normally, the child needs social stimulation and interaction with others, especially with his own peers. The Harlow experiments with the social development of monkeys indicate that even with these lower animal forms, interaction with agemates is as necessary and important as parental love for normal growth. The handicapped child might find this experience with peers in a special school, in a special class in a regular school, or in a normal class in such a school. The goal of special education everywhere is to integrate the child into the life of the normal community, and that means to give him as much contact as possible with normal people. His handicap may make it difficult for him to discover his own friends and to establish his own friendships, and so parents and other adults must take pains to create situations for him which bring him in touch with others, as by inviting other youngsters into their home, taking the child to the homes of friends, helping him to join a Scout group, or taking him to church. An experience in a summer camp can open a new world to the handicapped youngster; in the U.S.A. more and more regular camps are accepting such children, and other camps are designed for specific groups such as the cerebral palsied. The experience with a baby-sitter can extend the child's horizons, too. The Easter Seal Society has experimented with the training of teenagers for baby-sitting with severely crippled children, many of whom had never been away from the mother.
The handicapped youngster is more inclined than the normal child to wonder whether others really want him as a friend. He has fewer of the casual everyday contacts out of which friendships grow. But the affection and respect given to him by adults, and their efforts to help him find things to admire and like in himself will make him seem more worthy of friendship, both in his own eyes and in the eyes of others.
A sixth need is for privacy. Like every child, the handicapped child needs at times to be alone, to have time for quiet and time for daydreaming. But the life of the handicapped may be so highly routinized that he has no chance just to be by himself. He also needs privacy of possessions, which must somehow be provided in a group living situation as in an institution. He needs privacy of his person, which is especially important to the adolescent who becomes self-conscious about bodily changes. When help in dressing and bathing and toileting is necessary, adults must realize how painful it may be at times for the adolescent not to be able to hide the pubic hair, the budding breasts, the growing genitals. As much as daily routines permit, one must avoid embarrassing the sensitive adolescent.
Marriage and Children
A further need is for a mate and children of his own. Fortunately the people in most countries have lost their fear that the mentally retarded might contaminate the race by reproducing. In the U.S.A. there are still 19 states with laws permitting sterilization of the mentally defective, but in actual practice this rarely occurs. Still the handicapped youngster faces the bitter possibility that he or she might not be considered a desirable mate by a normal person, especially at a point in life when the body image is so important, when physical attractiveness is rated higher by the adolescent than other traits such as honesty and consideration for others. Only a minority of the cerebral palsied marry, for example.
It is interesting to note that deaf girls more frequently marry boys with normal hearing than deaf boys marry normal girls. A 20-year-old student of the writer's described how she had been dating this past year a young man with one leg shortened by polio, and how her parents had violently objected to this. Thus, the problem of finding a mate includes possible rejection by other parents as well as by one's peers. The writer also knows a very happy couple where the husband, who is an important public official in the Netherlands, wears a heavy brace because of congenital deformities, and needs help in bathing and dressing. A woman who met them said afterward, "How could that woman bear to marry such a man?" It was pointed out that he was a very fine person, and that his wife was fortunate to have married him. But this evaluation of a person in terms of a complete body and perfect senses is all too common. The very motto used by some universities, "A sound mind in a sound body," in sense implies that a sound mind can only be found in a sound body. The writer recalls the shyness and self-deprecation of a young woman working as a secretary in the National Foundation for the Blind in Paris; blinded and facially disfigured seven years earlier by an explosion of cleaning fluid in her home, she had come to believe that no man could ever think of marrying her.
The handicapped adolescent may worry about having a normal sexual relationship, and being able to have children. It is important that this boy or girl be helped to understand that sexual satisfaction, desirable though it is, has often been overemphasized, and that sexual vigour is less important in a lasting relationship than tenderness and understanding and respect for one's spouse as a person. In the American culture, where sex is exploited as an appeal in advertisements for everything from detergents and shaving cream to automobiles, there is an overemphasis on the physical aspects of sexual attraction, such as youth, physical beauty, and wholeness of body.
The boy may doubt his ability to support a wife, and the girl may wonder whether she can care for a home and children. Both boys and girls must be helped to develop usable skills wherever possible, and this means as complete an education as is available to the normal young person. The girl must also be taught the ways in which she can manage household routines, sometimes with the help of a specially arranged home or specially devised equipment, such as a one-handed eggbeater or a spiked board to hold an onion that is being cut up with one hand. There are 5,000,000 seriously disabled housewives in the United States who continue to carry on their domestic functions in this way. New ingenious devices to help the handicapped parent are constantly appearing, such as a flashing light to signal a ringing doorbell or a crying child in the home of deaf parents.
Another important aspect of adjustment to sex role is that the handicapped youth needs good models with whom he or she can identify. For instance, there should be as many men teachers as women teachers in their experience, so that the young person can develop adequate concepts of the role of both sexes and identify with a person of the same sex. This means that all who work with handicapped children must try to be the kind of person who represents a healthy, happy adjustment to life.
Last of all, there is the need for achievement as a basis for self esteem. Kvery person needs to feel that there is something useful and worthwhile he can do, some contribution he can make to society, since the individual is often valued in terms of the useful work he can perform. It is especially important for the teacher to discover skills and accomplishments which the handicapped youngster can master. There is always something he can learn, starting with the activities of daily living and going on to the solving of problems in arithmetic, the painting of toy furniture, typing with the toes, and embroidering with a hook in place of a hand.
The young person must be helped to formulate realistic vocational goals, though it is possible to set goals too low as well as too high. Sometimes, for example, by letting the boy aspire to become a doctor, he finally is able to become a laboratory technician, but he never would have become a laboratory technician if he had not first aspired to be a doctor. Of course there are instances of obviously inappropriate choices, where tactful redirection is needed, as in the case of a cerebral palsied boy with a marked facial grimace who wanted to become a television announcer, and a girl with muscular dystrophy who wanted to become a ballet dancer. At the same time continuing exploration of job demands reveals many kinds of work that can be mastered by persons with a handicap when previously they were prevented from acquiring the necessary skills and knowledge because of stereotyped ideas about what such persons could or could not accomplish.
Stereotype vs Ability
Stereotyped concepts about what persons with certain kinds of handicap can or cannot do may prevent the young person from discovering and using his talents. The blind and the deaf can do much more than cane chairs, make brushes and brooms, and sell lottery tickets a monopoly on the sale of such tickets is the only provision made in Spain for the blind to earn a living. Also the mentally handicapped have capacities that arc often overlooked, as Dr. Gunzburg in England is discovering in training even those with IQ's below 50 to perform regular work out in the community. He found too that it was important to develop more favourable attitudes on the part of employers, and to convince them that a properly trained and supervised retarded person could perform adequately on the job, and at times do it more faithfully than the brighter person who might become bored. Yet the prejudiced beliefs of employers concerning the mentally and physically handicapped persist, as shown by the story which appeared in Time magazine about a Greek youth, blinded as a child by a land mine during World War II, who read Braille with his tongue, and eventually graduated at the top of his group when he took the bar exams in Athens. In spite of this he could find no employment until a magazine article led shamefaced Athens businessmen to reconsider his qualifications.
Dr. Gunzburg has also pointed out that good social and emotional training are just as important as specific vocational training to make mentally retarded persons employable, and this would apply equally well to persons with other kinds of handicap. After all, the ultimate goal is the complete integration of the handicapped person into the community, and a prerequisite for this is careful vocational assessment, adequate vocational or professional training within a wide range of choice, and more positive employer policies. Even general unemployment and limited job opportunities in a society cannot alter the fact that it is economically advantageous to make self-supporting citizens of its handicapped members rather than to maintain them in segregated idleness. The handicapped person wants not pity and charity but a chance to prove his worth.
To make satisfactory achievement possible for the handicapped, architectural barriers must be removed which prevent them at various age levels from having normal opportunities-in the home, in the school, in the factory, and in public buildings like theatres, museums, and churches. Interestingly enough, the adaptations that make buildings more convenient for the handicapped often make them safer and more convenient for the nonhandicapped too, as in providing wider doors and corridors, ramps instead of stairs, and handrails in strategic places. The new campus and buildings of the State University in Albany, New York, are planned so that every classroom and facility are available to a handicapped student, and thus more and more initial planning will be done with such needs in mind.
A consideration of these needs of the handicapped child heightens one's awareness that this child is a person, a unique individual, who like every other person deserves the chance to live a normal life, to respect himself, to be respected by others, and to perform useful work in the community. And sometimes those who help the handicapped to find themselves discover things about their own personalities which they had not known before, and rediscover a meaning and purpose of life. They learn that a rich and mature personality does not necessarily include a whole or a beautiful body, athletic ability, or sexual prowess. They learn that the fundamental human qualities that matter are courage, a love of life, a boundless curiosity, a sensitive and perceptive sense of humour, an awareness of beauty, and a deep concern for other people. Experiences with the handicapped reaffirm the basic value of life itself, the fundamental worth and dignity of every human being.
This article originally appeared in The Journal of Rehabilitation in Asia, Vol. X, No. 2, April 1969. It is reprinted with the kind permission of the author and publisher.
Isabelle Wagner Taylor is the Professor and Head of the Department of Psychology at Russell Sage College, Troy, New York.