Normalisation

A Reader

Hilary Brown, Helen Smith

• Publisher: Routledge
• Year: 2012
• Print ISBN: 9780415061193
• eBook ISBN: 9781134926695
• Edition: 1
• Topic: Medicine
• Subtopic: Health Care Delivery

Normalisation, the theoretical framework that underpins the movement of services for people with disabilities from long stay hospitals, has recently become the focus of much academic and professional attention. As the community care debate has moved into the public arena, it has attracted a certain amount of criticism, acknowledging the political and philosophical conflicts that surround it.

Normalisation: A Reader for the Nineties provides a much needed, informed appraisal of this controversial practice and combines various perspectives on the subject, including applied behavioural analysis, social policy and psychodynamic approaches. Thus it explores the discrepancies between the ideal and the reality and extends the debate by drawing comparisons, with other political and social ideologies.

1 What is Normalisation?

Eric Emerson

The term normalisation has now been in use for three decades. During this period it has proven to be an influential concept in debates concerning the most appropriate way of providing services for people with learning difficulties in Scandinavia (for example, Bank-Mikkelsen 1980; Grünewald 1986), North America (for example, McCarver and Cavalier 1983; Pelletier and Richler 1982), the United Kingdom (for example, Tyne 1987, 1989) and Australasia (for example, Anninson and Young 1980). More recently, this influence has broadened to include other disability groups. Since the origination of the concept, in Denmark in the late 1950s, however, normalisation has been defined in a number of distinct ways. Indeed, there is really no such thing as the concept or principle of normalisation. Instead there exists a family of ideas that share a common ancestry but which diverge at critical points. In order to assess the impact or adequacy of the concept, therefore, it is necessary to disentangle this interlinked web in order to clarify which or whose notion of normalisation we are actually addressing. Indeed, one of the most abiding characteristics of the debate concerning the value or utility of the principle of normalisation has been the saddening extent to which criticisms have often been based upon gross misunderstandings regarding the actual meaning of the concept (cf. Wolfensberger 1980a).

This chapter will attempt to identify the main formulations of normalisation influential within the United Kingdom and to identify, for each of these strands, the characteristics and major implications for service provision.

The Development of Normalisation: Scandinavian Thinkers – Bank-Mikkelsen and Nirje

The concept of normalisation originated in Denmark where, in the 1959 Mental Retardation Act, the aim of services was defined as being ‘to create an existence for the mentally retarded as close to normal living conditions as possible’ (Bank-Mikkelsen 1980: 56).

This definition was later elaborated to include ‘making normal, mentally retarded people’s housing, education, working, and leisure conditions. It means bringing them the legal and human rights of all other citizens’ (Bank-Mikkelsen 1980: 56). Throughout the 1960s this notion of normalisation came to have a considerable impact upon the development of services and associated enabling legislation for people with learning difficulties in both Denmark (Bank-Mikkelsen 1980) and Sweden (Nirje 1969) where normalisation was redefined as meaning

making available to all mentally retarded people patterns of life and conditions of everyday living which are as close as possible to the regular circumstances and ways of life of society.

(Nirje 1980: 33)

These early Scandinavian formulations of normalisation are reasonably straightforward in that they advocate that services should seek to maximise the quality of life of service users by reproducing the lifestyle experienced by non-disabled citizens. Nirje (1980) describes the key characteristics of such a lifestyle in relation to eight areas:

– The rhythm of the day including the times and patterns of waking, dressing, eating and retiring at the end of the day.

– The rhythm of the week which is described as including not only the demarcation of weekends as being different from weekdays but also the importance of enjoying home, work and leisure activities in different settings.

– The rhythm of the year including participating in vacations.

– Progression through the stages of the life cycle including exposure to the normal expectations of childhood, adolescence, adulthood and old age.

– Self-determination.

– The development of heterosexual relationships including the right to marry.

– Economic standards including equal access to benefit payments and fair wages for work undertaken in workshop settings.

– Environmental standards including the need for ‘standards for physical facilities like schools, work settings, group homes and boarding houses … [to] … be modelled on those available in society for ordinary citizens’ (Nirje 1980: 44)

While these two early definitions of normalisation may differ in some minor aspects (see Wolfensberger 1980a) their similarities are more important. In particular both approaches share three characteristics:

1. they are egalitarian statements about the rights of service users;
2. they focus on equality in terms of an individual’s quality of life; and
3. they do not specifically confront the issue of segregation in service design.

In these early definitions, normalisation becomes a statement about how services can reflect the basic rights of people with learning difficulties in an egalitarian society. As Perrin and Nirje point out ‘normalization as originally defined is based upon a humanistic, egalitarian value base, emphasising freedom of choice and the right to self-determination’ (Perrin and Nirje 1985: 71). Similarly, Bank-Mikkelsen suggests that ‘a significant element of normalization theory is… the juridical and administrative view that all are equal under the law’ (Bank-Mikkelsen 1980:57). The grounding of normalisation in basic human and civil rights was reflected in the incorporation of the Scandinavian definition in the United Nations 1971 ‘Declaration of General and Specific Rights of the Mentally Retarded’. Thus, normalisation did not develop as an isolated ideal but reflected the prevalent liberal trends of many Western societies at that time to respond to the demand for the equal rights of a number of disadvantaged or minority groups.

The key point, however, is that normalisation for Nirje and Bank-Mikkelsen is about rights and, as such, requires no scientific justification. In addition to a basic emphasis on rightfulness, Bank-Mikkelsen and Nirje define normalisation in terms of the quality of life or lifestyle of service users. Bank-Mikkelsen (1980), for example, defines normalisation in relation to ensuring equality on a number of traditional social indicators of quality of life including housing, education, work and leisure. Nirje (1980), on the other hand, in taking a more psychological approach, defines the key aims of normalisation in terms of normative lifestyles.

The fundamental aim of normalisation in these early definitions was to ensure that people with learning difficulties enjoyed their rights to the same quality of life as non-disabled members of society. An implication of defining equality in these terms was that such equality could be pursued in settings which segregate service users from non-disabled citizens. Equality, at least in the short term, did not necessarily require integration. Bank-Mikkelsen, for example, argued that ‘while normalization is the objective, integration and segregation are simply working methods’ (Bank-Mikkelsen 1980: 56). Similarly, Nirje (1980) discussed the benefits of integrating people with severe learning difficulties with groups of people with mild or moderate learning difficulties.

As we shall see later, other commentators have tended to view the social integration of disadvantaged people as an essential component of normalisation based upon the belief, as Wolfensberger asserts, that ‘in the long run, no good can come from any program … that is not based on intimate, positive one-to-one relationships between ordinary (unpaid) citizens and those who are handicapped’ (Wolfensberger 1980a: 77). However, the ‘equal but separate’ approach encapsulated in the Scandinavian definition was reflected in the initial impact of normalisation in the United Kingdom which occurred largely in relation to the design of the physical environment of essentially segregated services (for example, Centre on Environment for the Handicapped 1972; Gunzberg 1970; Gunzberg and Gunzberg 1973).

The North American Version – Wolfensberger

During the period in which the concept of normalisation was being developed in Scandinavia, significant changes were also beginning to occur in North America. The number of people in state and county psychiatric hospitals declined steadily from the mid-1950s onwards (Brown 1985). Civil rights activism at this time had resulted in the acknowledgement in Federal Courts of psychiatric patients’ substantive right to treatment within the ‘least restrictive alternative’ (Castellani 1987). In 1963, John F. Kennedy called upon Congress for action

to bestow the full benefits of our society on those who suffer from mental disabilities … [and] … to retain in and return to the community the mentally ill and mentally retarded, and there to restore and revitalize their lives.

(cited in Scheerenberger 1983: 248)

A decade later Wolfensberger first proposed (Wolfensberger 1972) and then developed (Wolfensberger 1980a, 1980b; Wolfensberger and Glenn 1973a, 1973b, 1975a, 1975b; Wolfensberger and Thomas 1983; Wolfensberger and Tullman 1982) a more elaborate definition of normalisation in an attempt to ‘North Americanize, sociologize, and universalize the Scandinavian formulations’ (Wolfensberger 1980a: 7). He initially defined normalisation as the

utilization of means which are as culturally normative as possible, in order to establish and/or maintain personal behaviors and characteristics which are as culturally normative as possible.

(Wolfensberger 1972: 28)

This definition has undergone two main changes, reflecting first a growing emphasis upon the importance of the way in which disadvantaged people are portrayed or perceived by the public (Wolfensberger 1980a) and second, a reformulation of the aims of normalisation in terms of socially valued roles rather than culturally normative practices (Wolfensberger and Thomas 1983; Wolfensberger and Tullman 1982). Shortly after the introduction of the concept of valued social roles, Wolfensberger proposed renaming normalisation ‘social role valorization’ (Wolfensberger 1983a, 1984), a term which he defined as incorporating ‘the most explicit and highest goal of normalization.…the creation, support, and defence of valued social roles for people who are at risk of devaluation’ (Wolfensberger 1983a: 234).

Wolfensberger and Thomas (1983) identified seven core themes which were the theoretical underpinnings of normalisation.

1 The Role of (UN)Consciousness in Human Services

Throughout Wolfensberger’s writings (for example, Wolfensberger 1972, 1975, 1980a, 1980b, 1983a, 1987; Wolfensberger and Thomas 1983) there exists a powerful notion of social intent in historical and social processes. For Wolfensberger, social policies towards disadvantaged groups reflect ‘society’s real but destructive intentions or needs … [but that such] … unpleasant realities are apt to be denied and repressed into unconsciousness’ (Wolfensberger and Thomas 1983: 25), not only by individuals but also by organisations and society as a whole. This view of society as some kind of cognate being is reflected in Wolfensberger’s recent argument that society has

made an identity alliance with death and … [is] working feverishly toward the destruction of life on this planet… [as reflected] … in a very well hidden policy of genocidal destruction of certain of its rejected and unwanted classes.… Once a society has made a decision (explicated or not) to come down hard on a devalued minority group, it will transact this decision through whatever technical measures it may take toward this group, even those measures that are interpreted as being to the latter’s benefit.

(Wolfensberger 1987: 141)

As a consequence of such an analysis, Wolfensberger places considerable emphasis upon raising the consciousness of those involved in human services by making manifest these latent social intentions.

2 The Relevance of Role Expectancy and Role Circularity to Deviancy-Making and Deviancy-Unmaking

In his attempt to ‘sociologize’ normalisation, Wolfensberger (1972) combined the egalitarian aims of Bank-Mikkelsen and Nirje with some contemporary developments in sociology. During the 1960s and early 1970s, societal reaction or labelling theories were playing a dominant role in the sociological study of deviance. These theories proposed that the characteristics and behaviour of members of deviant social groups (for example, people with disabilities or people who offend against the law) is largely determined by the way in which society responds to them once they have been ‘labelled’ rather than by any biological or psychological factors that may have led the individual to become labelled in the first place. In other words, once someone has been cast into a deviant social role ‘the original causes of the deviation recede and give way to the central importance of the disapproving, degradational, and labelling reactions of society’ (Lemert 1967: 17). As a result ‘deviance is an outcome of societal reaction, or labelling by official control bodies’ (Davies 1975: 172, emphasis added). As Scull points out, the notion that crime was largely ca...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright
• Contents
• List of Contributors
• Foreword Linda Ward
• Preface
• Acknowledgements
• Introduction
• 1. What is Normalisation?
• 2. Normalisation Training: Conversion or Commitment?
• 3. Normalisation: From Theory to Practice
• 4. The Social Origins of Normalisation
• 5. Normalisation and Applied Behaviour Analysis: Values and Technology in Human Services
• 6. Inside-Out: A Psychodynamic Approach to Normalisation
• 7. Social Welfare Ideologies and Normalisation: Links and Conflicts
• 8. The Limits to Integration?
• 9. Promoting Race Equality through Normalisation
• 10. Assertion, Not Assimilation: A Feminist Perspective on the Normalisation Principle
• Postscript
• Name Index
• Subject Index