===== Changing Patterns in Residential Services for the Mentally Retarded ===== === by Bengt Nirje, === //A major theoretician within the normalization movement outlines its basic tenets.// ---- In an earlier section of this book I have described some observations and reactions upon visiting public institutions in the United States. I will now attempt to describe the theoretical perspective from which my reactions to my observations stem. My entire approach to the management of the retarded, and deviant persons generally, is based on the "normalization" principle. This principle refers to a cluster of ideas, methods, and experiences expressed in practical work for the mentally retarded in the Scandinavian countries, as well as in some other parts of the world. The normalization principle underlies demands for standards, facilities, and programs for the retarded as expressed by the Scandinavian parent movement. The papers by Scandinavian contributors Bank-Mikkelsen and Grunewald in this monograph provide specific descriptions of functioning programs which incorporate normalization principles. To discuss human endeavors to create wholesome programs, facilities, and life conditions for other human beings in terms of one unifying principle might seem preposterous, especially when the mentally retarded are involved, a group which is characterized by wide variations in age, degree of handicap, complicating physical and emotional disorders, social backgrounds, and educational and personality profiles. Nevertheless, in the Scandinavian countries, a general principle which expresses the aims, attitudes, and norms implied in quality work for and with the mentally retarded has been found of value. As expressed by N.E. Bank-Mikkelsen of Denmark, this principle is given in the formula "to let the mentally retarded obtain an existence as close to the normal as possible." Thus, as I see it, the normalization principle means making available to the mentally retarded patterns and conditions of everyday life which are as close as possible to the norms and patterns of the mainstream of society. This principle should be applied to all the retarded, regardless whether mildly or profoundly retarded, or whether living in the homes of their parents or in group homes with other retarded. The principle is useful in every society, with all age groups, and adaptable to social changes and individual developments. Consequently, it should serve as a guide for medical, educational, psychological, social, and political work in this field, and decisions and actions made according to the principle should turn out more often right than wrong. Some of the many facets and implications of the normalization principle are discussed below. 1. Normalization means a normal rhythm of day for the retarded. It means getting out of bed and getting dressed even when you are profoundly retarded and physically disabled. It means eating under normal circumstances: sometimes, during the span of the day, you may eat in large groups, but mostly eating is a family situation which implies rest, harmony, and satisfaction. A normal daily rhythm also means not having to go to bed earlier than your peers because you are mentally retarded, not earlier than your younger sisters and brothers, or not too early because of lack of personnel. Facilities must also give consideration to the individual's need for a personal rhythm, allowing him to break away occasionally from the routine of the group. 2. The normalization principle also implies a normal routine of life. Most people live in one place, work or attend school somewhere else, and have leisure-time activities in a variety of places. Consequently, it is wrong when a retarded person, for example, has his training classes, his structured therapies, and his recreation activities in the same building that serves also as his "home." Of course, even when vocational activities are conducted in a special building, it is not satisfactory if this consists only of a few hours of low-motivated activities for a few days a week. Activation of the mentally retarded, which is all-important, must convey the experience that the daily work routine has vigor and meaning and, consequently, fills a proper part of the day. The afterwork satisfactions of leisure-time activities, whether they are for pure relaxation and fun or have more personal, educational implications, may sometimes take place in institutional or special settings, but for habilitational purposes, use should also be made of the facilities of the regular society, thus lending these activities realism. With wider experiences and proper social training, the retarded thus will be able to use the normal leisure-time facilities of his society on his own, and also learn to cope with unprepared, unstructured situations without panicking (Avedon, 1967; Chigier, 1967; Nirje, 1967). 3. Normalization means to experience the normal rhythm of the year, with holidays and family days of personal significance. Most people change their life situations and refresh their bodies and minds at least once a year by going on vacation. In Scandinavia, travel, including travel abroad, has proved meaningful and valuable even for the severely and profoundly retarded. 4. Normalization also means an opportunity to undergo normal developmental experiences of the life cycle: a. Children should have available warmth of atmosphere, rich sensory stimulation and surroundings, and settings of proper proportions. Handicapped individuals especially need to be fed with stimuli which will nourish knowledge and abilities. In cases where a retarded child cannot live with his own family, this aspect is of special importance. In normal society, small children live in a world especially structured for them, guided and taught by a few significant adults. In child-care homes, turnover of personnel should be minimal, thus offering the children basic security and opportunities for identification of the stand-in parents. These essential demands have proved almost impossible to realize in large heterogeneous institutions, where one is confronted with the specific attitudes of the personnel and the adult retarded. It is therefore completely wrong to let mentally retarded children live in the same institutions as retarded adults. b. Youths of school age in normal society also live in a world specifically structured for them. Childhood is a highly developmental period of great importance for learning about one's own personal abilities and potentialities, for obtaining understanding of oneself, and for building self-confidence that can serve as a sound basis for life after the school years. It is also a period during which social experiences outside the classroom are very important for personal stimulation and development. Youngsters and adolescents of school age who are retarded should therefore never live in a confined setting together with mentally retarded adults, because the young people's socialization and impressions of life should be gained as much as possible through contacts with normal rather than a deviant society. c. For the mentally retarded, growing from adolescence into adulthood is often a longer, more painful, and more uncertain process than for others. Their image of themselves often becomes warped and confused. They are not always accepted, treated, and respected as adults. Here, the attitudes expressed toward them by others are of utmost importance, whether these others are parents, relatives, or institution personnel. Thus, like everybody else, the retarded should experience the coming of adulthood through marked changes in the settings and circumstances of their lives. Just as it is normal for children to live with their parents, so it is normal for adults to move away from home and start a life of their own, as independently as possible. Therefore, it is wrong for mentally retarded adults to live on the same premises as children and youngsters, because this serves as a constant reminder that they are different from other adults, and that they are as dependent as children. Training programs for retarded young adults should assist them to become as competent and independent in their personal daily routine as possible, and to develop social skills which will enable them to take part in the regular community life as much as they can. d. The period of old age, when work is no longer possible or feasible, consists for most people of contacts with the familiar settings and acquaintances that have given life so much of its content and leaning. Therefore, alternate living facilities for the aged retarded should be arranged close to the place where they have spent their adult periods of life, in case they cannot remain in that very place. 5. The normalization principle also means that the choices, wishes, and desires of the mentally retarded themselves have to be taken into consideration as nearly as possible, and respected. In May 1968 a conference was arranged for mentally retarded young adults, IQs about 35-70, from eight cities in Sweden. In this conference, these young men and women, 18-30 years old, discussed vocational training and their leisure-time and vacation problems. They wanted a stronger voice in their own leisure-time programs, student clubs, and labor union participation. They objected to being included in activities with children below the age of 15 or 16, and to being in too large and too heterogeneous groups. In discussing group study tours and group vacation trips, they stressed their demand to be only in small homogeneous groups. They found communication in large groups unsuitable, as it is more difficult to hear and understand what is being communicated. Obviously, they had too often had the normal tourist experience of moving in herds. 6. Normalization also means living in a bisexual world. Accordingly, facilities should provide for male and female staff members. When it comes to the integration of retarded boys and girls or men and women, the 1967 Stockholm Symposium on "Legislative Aspects of Mental Retardation" of the International League of Societies for the Mentally Handicapped came to the following conclusion; "Being fully mindful of the need to preserve the necessary safeguards in the relations between mentally retarded men and women, the members of the Symposium are of the opinion that the dangers involved have been greatly exaggerated in the past. This has often resulted in the unfortunate segregation of the sexes in an unnatural way and has militated against their interests and proper development. The League is an international federation of associations of parents of the mentally retarded. The symposium, published by the League, summarizes basic principles upon which practices in the field of mental retardation should be based. These principles were derived from a definition of the rights of the mentally retarded."Accordingly, the Symposium strongly advocates the mixing of the sexes in a manner as free as is commensurate with normal restraints, not only in day centers and workshops, but also in leisure time activities. "Experience in some countries indicates the advantage of mixing men and women in hostels and other residential facilities in such a way as is approximate to normal life." Mixing of the sexes according to the normal patterns of everyday society results in better behavior and atmosphere, as more motivations are added. And the mildly retarded sometimes suffer in a loneliness that has no sense, and as others, they may be better off married. 7. A prerequisite to letting the retarded obtain an existence is close to normal as possible is to apply normal economic standards. This implies both giving the retarded those basic financial privileges available to others, through common social legislation, as well as any other compensating economic security measures that may be applicable. This includes child allowances, personal pensions, old age allowances, or minimum wages. Of these allowances, the larger part may be used for board and lodging, but a normal amount of pocket money for the individual's private use should be given regularly, both to assist in realistic social training and to help foster independent choices. Work that is done in competitive employment, in sheltered workshops, or within institutions should be paid for according to its relative north. 8. An important part of the normalization principle implies that the standards of the physical facilities, e.g., hospitals, schools, group homes and hostels, and boarding homes, should be the same as those regularly applied in society to the same kind of facilities for ordinary citizens. Application of these standards to facilities of various types imply a number of important specifics: a. It means that the sizes of facilities should conform to what is normal and human in society. Especially, it should be kept in mind that a facility for the retarded should never be intended for a larger number of persons than the surrounding neighborhood readily assimilates in its regular everyday community life. b. It further implies that in planning the location of these facilities, they should never be placed in isolated settings merely because they are intended for the mentally retarded. With normal locations and normal sizes, facilities for the mentally retarded will give their residents better opportunities for successful integration. **Some Benefits of the Normalization Process** All the above-mentioned facets of the normalization principle make a normalization of the life situation of individual retardates quite feasible: the normalization process can aid many in achieving complete independence and social integration; a great number will be helped in developing relative independence though they may always need various kinds of assistance to various degrees; even the relatively few who are severely or profoundly retarded, or who are afflicted with complicating medical, psychological, or social handicaps will, no matter how dependent they may be, have life conditions, facilities, and services that follow the normal patterns of society. For the retarded child, adolescent, and young adult, almost every situation has pedagogical implications, possibilities, and values. Just as the right of education is important for every citizen, so it is important for the mentally retarded to have a right to equal opportunities for education, training, and development. Development of various abilities always has bearings on the development of the whole person. Development of the retarded therefore places particularly heavy responsibilities on persons in charge of the life conditions of the retarded. Mental retardation as a handicap creates especially high frustrations and hurdles for the individual, thereby making it even more urgent to assist and stimulate the retarded in the building up of his self-confidence. Through stimulating and rich experiences, he can experience himself as an active agent while sensory deprivation imposes a further handicap. To develop a feeling of personal identity is an essential growth factor, and thus the experience of being nameless and anonymous is dangerous and damaging. The self-image of the retarded must be built on letting him experience his personal abilities; thus experience of rejection and disregard creates confusion, stress, and unhappiness. To develop self-regard, the retarded person must learn how he can succeed through his efforts to cope and thereby to obtain experiences of responsibility. Thus, a too sheltered and barren environment which does not allow for personal activities too often leads to experiences of failure and of being without status and value. The development of a feeling of personal dignity can determine the degree of self-control established, while the experience of lack of regard from others is threatening and corroding. All these factors coincide decisively when the retardate in his development comes to the state of accepting himself as an adult and as a responsible person with a realistic self-confidence. These points are the more important, as becoming adult for the mentally retarded also means coming to terms with his own awareness of being mentally retarded (Cobb, 1966). As almost every situation for the mentally retarded has a pedagogical significance and often is related to his slow building up of a self-concept, it is essential that the mentally retarded should be offered appropriate facilities, which assist his educational processes and development and which make it possible for him to experience himself as becoming adult in his own eyes and in the eyes of others. This is a basic requirement for helping his life development come as close to the normal as possible.. Large institutions and the conditions we can observe in their back wards can never offer facilities of the kind and quality that are essential. In the large wards, the rhythm of the day reduces the retarded to an object in an empty, machinelike atmosphere. The normal rhythm of daily routines of occupation, leisure, and personal life is emasculated to surrogate activities, not integrated with a meaningful personal existence. The normal rhythm of the year is mostly dwarfed through the experience of monotonous confinement. The development of individuality is helplessly mutilated and crushed in a life in herds. Application of normalization principles has profound implications not only to the retarded but also to the public, to those who work with the retarded, and to the parents of the retarded. When residential facilities for mentally retarded children are constructed, located, operated, and interpreted as homes for children; when special schools for the mentally retarded are integrated into regular schools or are looked upon as no more than schools for children and youth; and when group homes and hostels for the adult retarded are looked upon mainly as homes for adults; then such direct and normal experiences will result in a normalization of society's attitudes toward the retarded. Isolation and segregation foster ignorance and prejudice, whereas integration and normalization of smaller groups of mentally retarded improve regular human relations and understanding, and generally are a prerequisite for the social integration of the individual. Normalizing a mental retardation setting also normalizes the working conditions of the personnel. Workers perceive the retardate, his role, and their own roles in entirely different ways. In turn, the workers themselves are perceived differently by society. They enjoy a higher status and gain in self-respect. Almost always, an increase in work efficiency and effectiveness is one of the results. Application of normalization principles also can serve to normalize the parents' situation. When residential centers, group homes, and schools of normal standards, sizes, and locations are available, as well as day centers and workshops, the parents of the retarded can choose placements according to the individual needs of the retarded person and the needs of the family. Their choice of placement can be accomplished freely and with an easier mind, rather than being an anguished and forced choice between the horrible and the impossible. The closer persons in the decision-making bodies of society come to the mentally retarded, the more likely they are to render decisions resulting in appropriate and efficient programs. It may be sobering to many Americans that in Sweden, programs based on normalization principles are not dreams but actual realities brought about by the decisions of "hard-headed" penny-pinching county council appropriation committees. For those who are interested in how normalization principles have been embodied in Swedish legislation, details are provided in the Appendix. **REFERENCES** Avedon, E. M. Therapeutic recreation service and mentally retarded adolescents. Paper presented at the symposium on //The Adolescent Retardate//, First Congress of the International Association for the Scientific Study of Mental Deficiency, Montpellier, France, 12-20 September 1967. Published by the Israel Association for Rehabilitation of the Mentally Handicapped (AKIM). Pp. 9-11. Chigier, E. The use of group dynamics in the rehabilitation of severely retarded adolescents in an institution in Israel. Paper presented at the symposium on //The Adolescent Retardate.// First Congress of the International Association for the Scientific Study of Mental Deficiency, Montpellier, France, 12-20 September 1967. Published by the Israel Association for Rehabilitation of the Mentally Handicapped (AKIM). Pp. 1-4. Cobb, H. V. The attitude of the retarded person towards himself. In International League of Societies for the Mentally Handicapped. //Stress on families of the mentally handicapped.// Brussells: ILSMH, 1967. Pp. 62-74. International League of Societies for the Mentally Handicapped. //Legislative aspects of mental retardation//. Stockholm: ILSMH, 1967. Nirje, B. Integrational Know-how: Swedish programs in social training. Paper presented at the Symposium on //The Adolescent Retardate.// First Congress of the International Association for the Scientific Study of Mental Deficiency, Montpellier, France, 12-20 September 1967. Published by the Israel Association for Rehabilitation of the Mentally Handicapped (AKIM). Pp. 5-8.