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A Quarter-Century of Normalization and Social Role Valorization

 | 
Robert J. Flynn
, 
Raymond Lemay

A: In Scandinavia

18. The impact of Normalization and Social Role Valorization in Scandinavia

Kristjana Kristiansen

Note de l’éditeur

The author remains responsible for all translations to English from Danish, Swedish, and Norwegian, unless otherwise indicated

Texte intégral

1Examining the impact of one thing upon another is nearly always problematic, as most everything occurs in larger contexts. This is perhaps especially true in the area of societal change. Social phenomena are, of course, a reflection of the larger dynamics of their time and place, but also evolve in a complex interplay of mutual influence. A phenomenon such as Normalization develops parallel and often concurrent with related societal trends, making discernment of impact of one element or dimension difficult if not improbable to separate from another. An example would be the question of central authority devolving into structures of local control and provision. While much of this direction is consistent with and even partially shaped by the ideological and theoretical dimensions of Normalization and Social Role Valorization, decentralization has also been part of a larger societal trend with probably its own origins and momentum.

2Furthermore, the notion of impact contains more than mere influence: It implies a force that arrives from somewhere else and strikes something. In the case of Normalization, the force did not have to travel very far to travel to Scandinavia, as its early ideas were developed and nurtured there. Normalization developed within the emerging Scandinavian welfare state ideology, and at least in part for this very reason it remains even more difficult to extricate the impact of Normalization (and more recently Social Role Valorization) out of this sociopolitical context.

3Recognizing these limitations, some basic themes of impact can still be described. The themes or areas of impact that follow are presented to some extent in chronological order, but with some clear overlap, and conclude with a description of some of the actual resultant impacts. It is also important to point out that major differences exist among the three Scandinavian countries. This paper has a particular focus on Norway, both because it is the least known by others and most familiar to the author. More specific descriptions of impact also are to be found in chapter 20 concerning research from Norway and Sweden.

1 NORMALIZATION AS AN IDEOLOGICAL ENERGY SOURCE

4It is not coincidental that the developing Scandinavian welfare states provided the cradle for the early ideas of Normalization. The rhetoric of Scandinavian welfare has consistently been infused with a passionate quest for fairness and justice, solidarity with the disadvantaged, and an equitable distribution of the good life. What is perhaps most noteworthy is how easy it has been in the last half-century for Scandinavian citizens to have at least superficial consensus on what is right and just.

5The first ripple of impact that one could ascribe to Normalization is as an ideological energy source. Although Normalization was often no more than a word, it was used consistently in contexts describing something wrong that should and could be made right. This gave Normalization a symbolic power that created emotional energy and a potential force for change.

6In the midst of other social movements of the 1960s, where groups such as racial minorities, women, and students were claiming oppression, questioning authority, demanding attention, and seeking liberation, Normalization created a more specific rallying point around the needs of disabled people. Normalization as a “battle-cry” was exemplified by Bank-Mikkelsen (1967), declaring the situation for retarded people as a part of the larger questions of class struggle and civil rights.

7A central factor of Normalization as an ideology has included the recognition of all people as fellow human beings of equal worth. This “perceptual revolution” has continued to challenge and reshape both public images and professional notions of “who people are,” their capabilities, and their needs. An understanding of who and what is human has been also essential in interpreting what had been happening as acceptable or not. Scandinavian society was not able to recognize injustice without identifying with the situation and experience of the victims. A recognition of fellow humanity suffering in inhumane conditions fueled a growing moral outrage, which was further enflamed by media coverage of scandalous conditions and treatment of huge congregations of people long hidden from public scrutiny. Such unveilings were important to engage the public will and a collective commitment to act.

2 NORMALIZATION AND SRV: MAGNET FOR ALLIANCES

8Normalization provided a new perspective and rallying point for social critique, and did so in ways that both strengthened some existing alliances but also even more importantly provided a platform for the formation of new alliances. Parents, advocates, and other concerned citizens could join together with enlightened (or at least disgruntled?) service workers in a common cause, forming an important new basis for cooperation.

9National organizations of parents and families of retarded people had been established in Denmark in 1952 (known as LEV) and in Sweden in 1956 (known as FUB), and were later often held together and strengthened by the glue of the Normalization ideology. Perhaps particularly because of the close working relationship with Niels Erik Bank-Mikkelsen in Denmark and Karl Grunewald and Bengt Nirje in Sweden, these parent organizations often articulated their demands under a “Normalization banner.” Both organizations had strong influence on shaping legislation, reorganization of services, and particular aspects of service provision, including the right to receive treatment and education and other services previously denied, and also to participate in the decision-making process. The Norwegian association was not formed until 1967 but has since then been a major factor in shaping social reform directions and standards.

10Networks involving people with impairments and that in varying degrees are controlled by themselves, are a trend to a large extent fostered by the Normalization movement. There are probably two reasons for this. First, elements such as liberation from service system control, and supports for greater autonomy and participation in decision making have been important parts of most formulations of Normalization, including specific ratings in PASS (Wolfensberger & Glenn, 1975a). Second, the leaders of the Normalization movement have been active initiators of these related alliances. Certainly Bengt Nirje’s role as ombudsman in Sweden, and the 1970 Malmö conference, are two examples of an important milestone for movements such as People First, and other groups organized around the idea of self-determination. The work of Gunnar and Rosemary Dybwad and the International League also provided a common ground for the developing ideas of both Normalization and self-advocacy. Perhaps more important for the most vulnerable members of society are the citizen advocacy alliances inspired directly by the ideas and work of Wolf Wolfensberger (see Wolfensberger, 1972; 1992; and Wolfensberger & Zauha, 1973).

11Normalization has continued to function as a magnet, attracting some and repelling others. It has aroused the curiosity of the curious, initially perhaps especially the interests of those critical of the status quo, and to a lesser extent those with alternative visions. Informal and formal networks have formed that perhaps otherwise would not have come together. Examples would be conferences, joint publication efforts, and study trips with Normalization as a key theme.

12More recently, access to the international SRV network offers both contact to a training and research network, and an identity with a mission. This identity-and-mission also can be likened to a magnet, as it attracts some and repels others. In part because of its more definitive character, SRV can in this way serve as an invitation and a call to decision.

3 NORMALIZATION AS A GUIDE FOR SOCIOPOLITICAL REFORM

13Progression from moral outrage toward societal change in Scandinavia has involved a great hope and faith in the collective state and its public reforms. Achieving an equitable standard of living for all citizens, including people who previously had been neglected or segregated, has often been interpreted as a question of clarifying legal entitlements, altering national resource allocations, and reorganizing public delivery structures. The expectation has been that the state can and should deliver what its citizens need, so that the extension of citizenship status has been seen as a key task in the Normalization process.

14“Normalization” is frequently mentioned as a guiding principle in major legislative documents concerning social reform in all three Scandinavian countries. This became increasingly true in Norway, and is certainly less and less true in Denmark.

15In 1959 the Danish parliament put into effect Act 192, which both described the rights for mentally retarded people and outlined a reorganization of the national service structures and content. (An English-language translation of the sections of this Act is available in Bank-Mikkelsen, 1969, pp. 245-254.) For its time in history, this law was remarkable in its comprehensiveness and underlying intentions of attention to the needs of a very neglected group. This legislation was extended 2 years later to also include people who were blind or deaf.

16This document includes the following oft-quoted goal for this reform in its statement of objectives: “The Care-service for the mentally retarded should seek to create conditions for the mentally retarded as close to what is normal as is possible” (Danmark: lov nr. 192). Much of this Danish legislation was influenced and formulated by Bank-Mikkelsen in close collaboration with the parents organization and a few concerned professionals.

17The phrase from this legislation has had a much greater international impact than it perhaps merits. It may not even have been noticed if it were not for the subsequent attention to Bank-Mikkelsen and attention to the content of the Act. Certainly one central influence was its attracting the attention of Sweden, and the resultant close collaboration with Karl Grunewald and Bengt Nirje. The phrase itself has been mistakenly called “the Bank-Mikkelsen definition of Normalization,” although it is not a definition, does not include the word Normalization, and he is not the sole author of the phrasing. He later called this phrase “the basis of the theory later to be called Normalization” (1980, p. 56). This phrase is also often interpreted outside of its context (which was as a statement of the purpose and objectives of a reorganization of services), such that many have incorrectly argued that Bank-Mikkelsen’s definition is a goal or ends-oriented one. (Further, this is often contrasted to Nirje’s later work, which is described as means or process-oriented, a description and contrast that is equally hard to substantiate if one examines original sources.)

18The 1959 Danish Act actually had a greater focus on establishing a right to treatment and service than on citizenship rights. This reflected what Bank-Mikkelsen later called “a new knowledge that mental retardation is a dynamic condition which can be influenced by treatment, education, and training,” calling this also “a new objective for services” (1980, p. 55). The Act also created a new professional worker education and identity for “care assistants.” Altogether this represented an early sign of what we would now describe as belief in the developmental assumption and possibly a step toward a commitment to competency enhancement.

19A Norwegian government report Service Development for the Disabled from 1966 states in its sections on objectives and major guidelines that the disabled should have the “same standard of living, freedom of choice to plan one’s life as others... to the degree that this is possible... Society must alter conditions so that people with disabilities receive the medical, pedagogical, and social assistance they need to fully develop their capacities. An important principle in this new way of thinking is Normalization. This means that one should not draw unnecessary lines of separation between the disabled and others with regard to medical and social care, schooling, education, occupation, and general welfare” (St. Meld. 88:66-67). In the history of Norwegian reform, this policy statement has later been referred to “as an important break with segregative care patterns” (St. Meld. 67:86-87:4). In addition to being a statement of antidiscrimination, this clause has also provided the groundwork for what in SRV/PASS language we know as the “utilization and development of generic resources.” It furthermore includes explicit recognition of people having capacities that can be developed, and that this requires modifications in their surroundings. This may be interpreted as positive assumptions about developmental potential, coupled with a view of disability that recognizes societal conditions as a contributing factor.

20In July 1968, the Swedish Law on Care for the Mentally Retarded went into effect (SFS 1967:94). (An English-language summary of some sections is found in Nirje, 1969, pp. 188-195.) This law described in great detail both service entitlements for the mentally retarded, and clarified a more decentralized locus of responsibility and organization of care structures. It further stipulated that schooling and occupation shall occur, and that these activities shall occur outside the residence, in accordance with normative daily and weekly rhythms.

21A 1977 Norwegian government committee report entitled The Disabled in Society contains the following statements: “Normalization of the situation for the disabled requires a Normalization of programs and services,” and also calls for an “end to discriminating and segregative arrangements, to be replaced with supports based in local communities and having one’s special needs met through the generic public system” (St. Meld. 23:77-78).

22The Danish 1959 legislation was amended or modified in 1970, 1974, and 1979, and repealed in 1980. Present legislation in Denmark gives the mentally retarded the same rights as other citizens and grants them access to the generic social support system. More recent legislation in Sweden went into effect in July 1986 and contains clearer specifications of care, service, and supports. More responsibility is placed on other public sectors, such as education and health for people’s more general needs. This law also more formally assures mentally retarded people the right to services, on a voluntary and not compulsory basis, and access to a court of law in case of denial, violation, or appeal. A new Swedish law for mentally retarded people came into effect in January 1994. This law mandated institutional closure, with plans to be completed by the end of 1994, and further stipulated “ten rights.” Central elements are rights for a personal assistant, respite care, and a general increase in self-determination. (An English summary of this law is available in Malena Sjöberg [1994]).

23Both Danish and Swedish legislation have been described inside and outside Scandinavia as “Bills of Rights” for the mentally retarded. Much of this thinking also provided the groundwork for the United Nations’ Declaration of Rights for the Mentally Retarded, in 1971. Norway has never had a specific law clarifying rights or legal entitlements for a specific group. The Norwegian National Association for the Mentally Retarded (NFPU) has consistently argued that the Norwegian constitution and other national laws apply to all citizens. More recently the need to have certain rights clarified in specific laws is being discussed again.

24It is also noteworthy that the word Normalization in early Norwegian public documents occurs in legislation regarding the entire disabled population (funksjonshemmete), not only the mentally retarded, and occurs consistently in recent years in official documents regarding national reforms in mental health and special education, as well as leading public documents regarding services for older people with impairments.

25In both Norway and Sweden, it is common to find Normalization and integration formulated alongside each other as dual policy goals or guiding principles. This implies that integration is something else or in addition to what lies implicit or explicit in Normalization, and many confuse the two terms, use them interchangeably, or assign them a similar content. Similarly, there is a lack of consensus on whether Normalization is a goal in itself or a means toward an end (and if so, what end?). Both policy documents and leaders in the human service field have claimed that “Normalization is the goal, integration the means,” while others state the exact opposite. More recently, people claim that “inclusion” is the means and “integration” is the goal, although Wolfensberger’s formulations of “integration” have proposed it as a means.

26Much of the Norwegian national policy occurring in juxtaposition with the word Normalization can be interpreted as a commitment to an “administrative Normalization,” including both decentralization of provision responsibility to local levels and an evolution from special, segregated care toward a single public and generic system for all citizens. As recently as 1994, Norwegian government reports imply that Normalization is the same as deinstitutionalization and/or normalized housing.

27The word Normalization has been present in Scandinavian public policy documents at many levels for a long time. But its use is sporadic, inconsistent, and perhaps even coincidental, often occurring isolated from any definition or explicit content.

28One could argue that the use of the word at least implies some sort of good intentions, but the presence of the word in even the most binding legislation has had a questionable impact, beyond its power as an ideological symbol.

29The expression normaliseringsprincipp (”Normalization principle”) can actually be found in Swedish documents as early as 1949, in contexts discussing access to the workforce for a category of people considered able to work. That this word was only just “discovered” in these early documents says something about the impact of a phrase alone.

30The very role of legislation in social change is at once partly culture-bound to its host society and yet also partly universal in its underlying assumptions and hopes. A Norwegian government report, Care of the Mentally Retarded, states: “Although there is considerable consensus that care provision is a public issue, one also recognizes that clarification of legal rights is not sufficient without political will and resources for implementation” (NOU 1973:25, p. 49). Recent research in Norway indicates a tremendous gap between official intentions and public rhetoric about Normalization and actual practice (Sandvin, 1993; Stangvik, 1993; Kristiansen, 1994; Ramsdal, 1994). Still, such government policy reports have an important role and function of bringing issues into the public arena for debate and discussion, often invited and enflamed by the media, and in this way have a wide impact on public sentiment and on discussions in the human service fields.

4 EXPORT OF IDEOLOGY

31Visits to other European countries and North America by Bank-Mikkelsen, Grunewald and Nirje and their presentations at many international conferences in the 1960s provided well-known impacts on the work of all of us in the field of human services. The Scandinavian principle of Normalization has attracted a great deal of interest and attention, and many international visitors came to see it in action. The tremendous attention awarded to the ideas from around the world has also had some “rebound impact” within Scandinavia. What had at first seemed reasonable and logical and simple became more interesting for many because of the attention it received. And the visits themselves were often mutually rewarding.

32The most powerful resultant export has been ideological in nature and inspirational in function. Essentially what was exported was a set of beliefs about what was right and some examples of “how to do it.” Bengt Nirje’s slide presentations of the late 1960s gave many people clear visual images of what was possible, especially perhaps with regard to alternative living arrangements. Wolf Wolfensberger has repeatedly credited this contact as the source of his original interest in the topic.

33Much of what appears to be exported these days is rhetoric about “rights” and “citizenship,” which have startling popularity in countries where citizenship and legal entitlements guarantee little if anything.

5 DEBATE: CONTENT AND IMPLICATIONS

34Bengt Nirje’s systemic statement of the Normalization principle in 1969 provided the world with eight descriptive components, which gave content to the phrase “normal life.” Access to a more typical life was seen as a human right. Nirje’s descriptions of typical life rhythms, patterns, and conditions and the similar ideas offered by Bank-Mikkelsen were seen as important in order to be able to identify what society should be providing, or, increasingly, what one should be entitled to.

35Initially, there was little debate in Scandinavia: Normalization seemed politically reasonable, easy to understand and accept, and essentially a pragmatic question with regard to implementation. It entered the political arena at a time when resources were plentiful. At some point the questioning started, and it was initially primarily theoretical, conceptual, and practical in nature, rather than ideological. Who or what should be normalized? Who says what is normal and who wants to be that anyway? Would it work anywhere? Does it apply to everyone? How do we actually do it? Mounting opposition was often based on misconceptions according to anyone’s definition and, at least on the surface, seldom of an ideological nature.

36The first organized effort in Scandinavia to grapple with these issues was Project Mental Retardation at the University of Uppsala in Sweden. This group has continued to provide an academic and research base in Scandinavia, with Normalization, integration, and quality of life as central areas of concern. Their primary interest has been to operationalize Normalization and integration for empiric purposes, as part of an ongoing attempt to investigate and document living conditions and institutional reform for mentally retarded people.

37One was, however, still left with the question of how things went wrong in the first place. Why had some groups in society been denied service and support and instead been segregated and stripped of their dignity and rights? What explanations does any society have for generations of bad treatment? Can we actually address the problem, if we do not understand the larger dynamics that caused the problem? Who might be in danger now, and why?

38The search for relevant theory has led some to the work of Wolfensberger. Wolfensberger’s work was originally introduced into the Scandinavian literature in 1971 and 1972 by Karl Grunewald (1971, 1972) with Swedish and Danish translations of Origin and Nature of Our Institutional Models (1969). Shortly after, the importance of social roles were discussed in two Norwegian government reports from 1973. The report Care of the Mentally Retarded contained a noteworthy summary of Rolf (sic) Wolfensberger’s work included in the section on future guidelines:

The provision of care is undergoing an intensive evolution, and as an introduction to describing future patterns of care it is useful to take a closer look at the forces that underlie this process. One then discovers that societal attitudes toward the mentally retarded are determined to a very great extent by the role or roles the mentally retarded have had, and that changes in service forms have been a natural consequence of changes in role and associated attitudes. (NOU 1973:25, p. 48)

39This is followed by a matrix showing role perceptions, associated societal reactions, and resultant care models.

40The same year, a Norwegian government report, Integration and the Aged, focused very heavily on the importance of social roles, especially for older people who leave their roles as worker and breadwinner. This paper also stated that “the value assigned to the characteristic of age will affect older people’s status and position” and that “age is increasingly viewed as a negative characteristic” (NOU 1973:60, p. 9). This report refers to the work of Rosow that three dimensions are important for social integration: “society’s values, formal and informal group memberships, and social roles.”

41Although a number of Scandinavian writers have since attributed Wolfensberger with making major contributions to the theoretical dimensions of Normalization, there exist no further translations of his writings in any Scandinavian language. Particularly in the Swedish literature one finds a sweeping dismissal of the Wolfensberger formulations, although it is clear the authors have either not read or perhaps not understood the literature. The main thread of critique is that Wolfensberger has reduced Normalization to individual-fixing and does not address societal issues. This is often also considered to be “typically American,” which has added to the general dismissal and disinterest.

6 IMPORT OF THEORY AND TRAINING TO NORWAY

42By the late 1980s, Norway had several major societal reforms under way, with Normalization stated as the guiding principle. Some of the central political decisions were the 1988 law requiring closure of the centralized mental retardation facilities, a school reform replacing segregated special education with integration in local public schools for everyone, a decentralization of service provision in mental health and mental retardation to the local (kommune) level, and a “normalizing” of residential care for older persons and those in centralized rehabilitation facilities. All of this was happening with no consensus at any level about the content or implications of Normalization, yet with a great eagerness to “do” it and with a number of social reforms already in full swing.

43Norwegian government reports from 1989 stressed the importance of “knowledge and competence in Normalization” (St. Meld. 47:89-90). Prior to this time no organized training or education in Normalization had been available in any Scandinavian country, outside of a few short seminars or speeches. In 1990 the Norwegian Ministry of Social and Health Services recognized this as an important priority and initiated a national training effort to be initially financed for 2 years. Although the most pressing need was in the field of mental retardation, where a comprehensive reform was under way, the Ministry emphasized that competency in Normalization was relevant for other “groups in society at risk of being socially excluded” and that “Wolf Wolfensberger’s work is of special interest in this regard.” This attempt represented a significant set of assumptions and understandings: (a) that social exclusion is set in focus, (b) that Normalization has applicability beyond the mental retardation field, (c) that Wolfensberger’s work was worthy of attention, and (d) that training should be a part of social reform.

44Three “known experts in Normalization” were invited to lead this training effort, two of whom had studied Wolfensberger’s work in North America. Training was organized as three similar but independent efforts, one of which was known as the Social Role Valorization Project. Nearly 1,000 people have attended 3-day workshops in the last 3 years (1992 to 1994), and many have attended follow-up events on specific topics. Follow-up events have included 39 persons who have attended PASS (Wolfensberger & Glenn, 1975a; 1975b) or PASSING (Wolfensberger & Thomas, 1983) in other countries, a few who have attended other Training Institute events in other countries, and many who have attended events by Michael Kendrick in Wales and Norway in 1992. A number of books and reports have also been published, representing an important contribution to the Norwegian literature.

45Norway remains the only Scandinavian country to have instituted formalized training in Normalization/SRV, including events via the international network. Historians and researchers can assist us in answering the question “So what?”

7 NORMALIZATION AND SRV: ACTUAL IMPACTS

7.1 INSTITUTIONAL REFORM

46One of Normalization’s first impacts on service provision in Scandinavia was actually an expansion and extension of the institutional care system, and in all areas of life: residential, education, occupation, leisure, treatment, and special services.

47In fact, the 1959 Danish legislation had established an independent system for mental retardation services. The oft-quoted phrase “as normal as possible” included life inside as well as outside institutions. In the first 15 years of the Danish reform, the number of people served in institutions doubled (Bank-Mikkelsen, 1967).

48Birger Perlt from Denmark has described three phases of institutional reform that are equally applicable to developments in Sweden and Norway (Perlt, 1990; Tøssebro, 1992):

  • the struggle for institutions

  • the struggle within institutions

  • the struggle against institutions.

49Expansion of the institutional system was partly a response to the demand for services for people who previously had received little or nothing, but it was also influenced by the idea of separate environments for different normative daily and weekly activities. The result was an increase in number of residential places, but also additional buildings and services on the institutional grounds that had other functions, such as occupational areas and leisure activity buildings. This was true both within the field of mental retardation and mental health.

50Norwegian government policy was recommending expansion of the existing mental retardation system as late as 1974 (St. Meld. 88:74-75), although an improvement of living conditions was a clearer rationale. Normalization provided rough guidelines through this entire institution-improvement phase of reform. Living quarters were “normalized”: made more homelike, especially with regard to sleeping, eating, and personal hygiene areas. There was a greater emphasis placed on schooling, occupation, treatment, and social/leisure activities. Policy statements indicated both a belief in the capacity to learn and develop, that people should receive the help they needed, and that this would require a variety of settings, routines, and expertise. There was an associated massive increase in resource expenditure and staff training.

51When institutional conditions were identified as unacceptable, the first interpretation was that they were also fixable. It was yet a nother conceptual leap to critique the institutional mode of service as degrading, unnecessary, and probably harmful. The ideology of Normalization provided a frame of reference to assist in this awareness. Today all three Scandinavian countries have clear policies on deinstitutionalization and decentralization of service supports to local levels. As late as 1987, about one-third of the approximately 17,000 mentally retarded people in Norway still lived in institutions, and nearly half of these in the large centralized institutions. In 1988 the Norwegian parliament mandated closure of this system. Mental health reform has shown a similar pattern, although slower in evolution.

7.2 NEARLY NORMATIVE HOUSING

52Today, living conditions and especially housing standards are greatly improved for mentally retarded people in Scandinavia, and for most other previously neglected groups as well. According to plan, by 1995 all Norwegians with mental retardation will have their own home. In reality, many will live in group homes with an internal atmosphere that ranges from homelike to institutionlike, with lives still dominated by “home care” professionalism.

53One can predict that Denmark may continue to have more examples of what can be interpreted by others as small segregated, congregated care homes. A partial explanation is that there exists a cultural analogue of communal living in the general population. Additionally, Denmark has long been a more pluralistic society than Sweden or Norway, and one hears such comments as “It is normal to be different in Denmark.” There is also a recognized tendency to encourage and cultivate subcultures in Denmark, often coupled with rhetoric about the right to choose to be different. There are some specific trends we can document in Norway that are related to the Normalization training effort. Segregated care models for older people have been most challenged in Norway in localities where Normalization training has occurred. Second, housing for people with special needs has often been unnecessarily dominated by the health sectors and professions, in terms of administrative routines and staffing patterns and competencies.

7.3 SCHOOLS FOR ALL

54Segregated “special” schools are closed or being closed in Scandinavia, as part of the Nordic campaign of “schools for all.” Local education authorities have the responsibility of implementation and provision. In Norway, this reform is going under the banner of “Normalization and integration.” Actual results in all three countries thus far would best be classified as physical and administrative integration. The National Research Council in Norway has been funding a number of projects around the restructuring of special education in accordance with these goals since 1994.

7.4 EMPLOYMENT

55More people with disabilities now have real jobs in integrated workplaces than before, and certainly day activity in general has become more work-oriented and more age-appropriate in all Scandinavian countries. The Scandinavian countries show variation in their national commitment to including people with disabilities in the workforce, which to some extent reflects variations in national values. The 1994 Swedish law gave unemployed mentally retarded adults the right to “day activity.” The right to work may be most valued in Norway, and certainly admittedly least so in Denmark, where unemployment is higher in the general population but also less likely to be defined as problematic.

56The Norwegian Department of Employment initiated a national effort of supported employment initiatives 2 years ago, an important step toward removing responsibility for day occupation from the health and social care sectors. Norway began offering intensive staff training in supported employment in 1994, including introductory modules on SRV for those who did not previously have such training. Another example is a book edited by two persons from the Department of Employment entitled Arbeid med bistand (“Supported Work”), with an introductory chapter on “Normalization and SRV as the ideological and theoretical basis for supported employment.” Supported employment in Norway is seen as a responsibility of the Department of Employment, not that of Health and Social Services. However, most people with mental retardation and other impairments in Scandinavia are still without real jobs, tending to have worklike occupation in sheltered or segregated settings, without a real wage.

7.5 LEISURE AND CULTURAL

57More so than in other countries, the provision of and support for cultural, leisure, and sport activities for everyone is seen as a responsibility of the public sectors in Scandinavia. And certainly more individuals with disabilities are now participating both to a greater extent and in a greater amount in such activities. Some segregated activities are still directly provided and encouraged by public and voluntary sectors. Other localities encourage the use of generic resources and activities, but often structure attendance and participation in larger-than-normative groupings, or at non-normative times of the day or week. However, some localities consciously support more use of ordinary community activities, clubs, teams, and associations.

58One inspiring example from the Ålesund community in western Norway has the following objective: “That each citizen will, through their own usual leisure and cultural interests and activities, come into contact with people with disabilities and experience them participating in valued activities and social roles” (Svisdahl, 1994).

7.6 INDIVIDUALIZED SUPPORTS

59The availability of individualized supports for participation in a variety of activities and settings in home communities and in society has been a central articulated aim of Normalization in all three Scandinavian countries, with some progress. Families receive more help at home than previously, and the options are increasingly flexible. A personal assistance model for physically disabled people is another example and has been much influenced by the international independent living movement. Most personal support arrangements are purchased, including many that have social integration as a purpose where other supports could be encouraged.

7.7 AUTONOMY

60Both individuals and organized collectivities of disabled people and other oppressed groups have a greater voice in Scandinavian society than before. This includes being involved in decision making about one’s own life and also in larger societal processes. These voices are also teaching society about oppression by the telling of personal and collective histories. This is a voice that is both more competent, more encouraged, and more listened to and acted upon by others. There is some evidence of related competency enhancement, such as workshops to assist individuals in understanding the different political platforms and how to vote in an election.

7.8 IMAGES, POSITIVE ROLE PERCEPTIONS, AND LANGUAGE CHANGE

61There is overwhelming evidence of conscious language change, in terms of labeling and interactions. As with other countries and languages, one also sees examples of politically correct language games and/or language change instead of real change. But the general trends are well intentioned and mostly positive.

62Particularly through Normalization/SRV training and its associated literature, more people and organizations in Norway have become aware of the power and dynamics of imagery, with resultant (and conscious) removal of much deviancy imagery and several creative attempts at positive alternatives.

7.9 ADMINISTRATIVE NORMALIZATION

63Normalization has had a clear role in defining sector responsibility for groups previously managed under a total institution model. Responsibility for education, employment, housing, transportation, and so forth are becoming slowly redefined as not appropriate to the realm of health and social services. In Norway, introduction of the construct of the culturally valued analogue has been helpful, both in clarifying the appropriateness of service function, and sector responsibility.

7.10 IDENTIFYING NEED FOR STAFF DEVELOPMENT AND WORKER COMPETENCY

64Normalization and SRV raise fundamental questions of what people need and have unveiled the need for many new staff competencies in many new settings. This has major implications for existing professional educations, competencies in the present workforce, and the general competencies of the “average citizen.” In Norway we have a project looking at how (if possible) to build in more SRV in undergraduate and graduate education in all fields of public service. A major challenge here is to maintain a fidelity to the needs of societally devalued groups rather than strengthen the interests of professions or organizations.

7.11 FRAMEWORKS FOR SERVICE QUALITY

65Normalization and SRV have had some clear and other less direct but visible impacts on questions of service relevance and quality. A number of frameworks and checklists have been developed to analyze, describe, and measure degree of quality in relation to Normalization. Many of these have their roots in the PASS instrument. In Norway, the constructs of culturally valued analogue and culturally valued means have proved helpful for comparative analysis and in identifying clearer pictures of positive and constructive alternatives.

7.12 TYPE OF RESEARCH QUESTIONS

66Normalization and SRV have provided new perspectives to formulate research questions and perhaps especially to identify and measure progress in the area of social reform. Variations reflect how the different countries formulate the central tenets of Normalization, and also reflect dominant signs of their times. This is discussed in greater detail in chapter 20 by this author together with Mårten Söder and Jan Tøssebro.

7.13 DEBATE

67If Normalization and SRV have had no other impact in the world, it has created a much-needed, ongoing and heated debate. It may even be that the lack of clarity around the concept has had a healthy (albeit unintentional) impact by stimulating a greater interest and a closer examination of what lies explicit and implicit in the various formulations and their often subtle yet extensive implications and possible consequences. Debates have brought into the public arena many critical questions about human needs, priorities, definitions of handicap and disability, the importance and meaning of compensation, what it means to be dependent on services, and what it means or could mean to serve. Research in Norway following the three training projects has documented a tendency for persons with Normalization/SRV training to be more able to identify with the individual person who needs support, rather than with other interests or perspectives such as professional or personal (Kristiansen, 1994; Ramsdal, 1994).

7.14 CHALLENGES TODAY

68In Norway, there is a clear interest in learning about Normalization and SRV, coupled with an understanding that it is more difficult and personally challenging than previously thought. This is in contrast to Denmark, where one rarely hears Normalization mentioned.

69The most basic misunderstandings still flourish, and several are particularly hazardous in today’s society. Some of the more dominant and dangerous misconceptions about what is central to both Normalization and SRV include the following:

  • equivalent to dismantling the institutional system, perhaps including the abolishment of all formal services, and relying on “natural supports.”

  • receiving (only) the “same as others,” and neglecting to identify and meet people’s specific individual needs.

  • that label-removal is sufficient, especially if replaced with the bestowing of “citizenship” labels.

  • to be “accepted as one is” (usually coupled with decreased commitments to positive developmental assumptions and competency enhancement) in societies that in reality are less and less tolerant and accepting.

  • equivalent to self-determination and legal entitlements, and that this will be sufficient for achieving needed societal changes.

70In addition to understanding and attempting to correctly address these misunderstandings and perversions, it is also important to understand the dynamics that allow them to persist. A major problem in Scandinavia remains the coupling of Normalization to people with mental retardation, or as broad as “disabilities,” preventing many from seeing other emerging patterns of societal devaluation.

71The Scandinavian welfare state has at least two intrinsic structural problems, which are problematic in relation to Normalization and most certainly to SRV. The first is the result of what began as good intentions of Scandinavian welfare to guarantee economic security for everyone and to protect workers and jobs. Social security benefits are now presenting a barrier for many people with disabilities in the argument for real wages. Equally serious are the unions who protect the interests and rights of service workers, even when the relevance of a service is called into question. Communities dependent on institutions for their livelihood experience a recycling of institutions, requiring that new inmate populations be available. Also typical is staff-transfer from the (rejected) institutional system into community care, justified in part as job protection. This happens in spite of documented institution-culture-transfer with the personnel. SRV has been helpful for many in raising consciousness about the function of much of the service empire in shaping and maintaining structural societal devaluation, which is occurring these days in harder-to-decipher forms.

72The second issue in a welfare state is that of responsibility. In a society where everyone has learned that the collective state has always provided, one continues to expect this provision to be the government’s responsibility. These expectations include those of service workers, average citizens, and persons and families who need help and support. When the collective public state decentralizes its service structures, the issue of responsibility is highlighted. Betterment of living conditions in the material realm may be technically possible for a society to engineer, but the Normalization of social relationships requires something more. SRV assists many to recognize the limits of dependence on the public sector to both commit itself to solutions and to be able to provide them, and that expecting public supports and services to function obscures personal obligation. SRV includes a clear invitation to be called to decision in solidarity and alliance with those who are disadvantaged and oppressed, and to be personally engaged in the task.

Bibliographie

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Auteur

Ph.D., Associate Professor, Faculty of Social Sciences, University of Trondheim, Trondheim, Norway

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