Bengt Nirje (1969). The Normalization Principle and its Human Management Implications. In R B Kugel & W Wolfensberger (Eds.) Changing Patterns in Residential Services for the Mentally Retarded Chapter 7, pp. 179-195 Washington DC: President’s Committee on Mental Retardation.
This short paper is generally accepted as the first definitive statement of the concept of normalisation which had slipped into the world as part of Danish Act No. 192 of 5 June, 1959. This granted devolved powers to the Danish National Service for the Mentally Retarded to provide people with learning disabilities with living conditions as close to those of others in society as possible (Bank-Mikkelsen, 1969).The society’s energetic Director, Niels Bank-Mikkelson, soon came to the attention of Bengt Nirje, the recently appointed Ombudsman of the Swedish Association for Retarded Children. Nirje had worked for the Swedish Red Cross in UNHCR camps for Hungarian refugees in Austria as well as on a project to support parents of children with cerebral palsy before joining the Association. So he had the international credibility and the breadth of experience that enabled him to generalise and to carry the ideas from Denmark to international symposia in Sweden and France and to colleagues in the US through whom he was invited to contribute two papers to the collection to be edited for the President’s Committee on Mental Retardation by Robert Kugel and Wolf Wolfensberger. This came out on 10 January 1969 in the dying days of the Johnson presidency (Nirje, 1992).
A life-style for people with learning difficulties which reflects
- a normal rhythm to the day
- a normal routine to life
- a normal rhythm to the year
- the normal developmental experiences of the life cycle
- having one’s choices, wishes and desires taken into consideration and respected
- living in a bisexual world
- normal economic standards
- standards of facilities similar to those others are accustomed to.
Such a lifestyle benefits both people with learning disabilities and their carers because both become more in touch with everyday realities.
He describes the `normalization’ principle as related to a cluster of ideas, methods, and experiences put into practice with people with learning disabilities that, quoting Niels Bank-Mikkelsen, “let the mentally retarded obtain an existence as close to the normal as possible”. But he sees it as a broader principle that can be applied to people with disabilities at all ages and in all situations.
He identifies eight features of the principle:
1. A normal rhythm to the day during which you do similar things at similar times to those being done by others in society but also with the flexibility that other people take for granted in their day to day lives;
2. A normal routine to life, that is to say, living in one place, attending school or going to work in another and participating in leisure activities in yet more places; this also means that people with disabilities have to learn to cope with unexpected, unstructured situations without panicking (Nirje, 1967);
3. A normal rhythm to the year, going on holidays, in some cases abroad, and celebrating birthdays and anniversaries;
4. Experiencing the normal developmental experiences of the life-cycle such as a stimulating environment in the care of a few significant adults during childhood, opportunities for learning about one’s own personal abilities and potentialities, for obtaining understanding of oneself, and for building self-confidence in youth, the experience of being accepted, treated, and respected as an adult, including the opportunity to start a life of one’s own, as independently as possible and the opportunity to spend one’s old age in familiar settings as close as possible to those with which they have been acquainted as adults;
5. Having one’s choices, wishes and desires taken into consideration and respected, something which is facilitated by opportunities to express oneself within small groups;
6. Living in a bisexual world where there are both male and female staff and acceptance that wanting to get married and to live together are normal;
7. As normal economic standards as possible, for example, drawing the same benefits as anyone else even where these may have to be topped up and being paid an economic wage for work done;
8. Standards of facilities similar to those others are accustomed to, for example, accommodation no larger than that which other people would occupy as a long-term residence in locations similar to those of other forms of accommodation.
He stresses that just because different people may benefit to a different extent from the principle is not a reason for denying them life conditions, facilities, and services that follow the normal patterns of society. For one thing, it is a matter of equal rights with other members of society.
Indeed he argues that, because the developmental challenges for someone with a learning disability are so much greater, we should make greater efforts to provide the experiences that will stimulate their growth. Without that, there is little chance of developing a personal identity and a satisfying self-image. Only by experiencing success and taking on responsibilities can someone with a learning disability gain self-esteem and a sense of personal dignity.
A person with a learning disability benefits from reaching a state of accepting himself with realistic self-confidence as an adult and as a responsible person (Cobb, 1967).
Everything in a person’s life has a developmental potential. Institutions and public attitudes which stifle this are no use. Isolation and segregation foster ignorance and prejudice, whereas integration and normalisation improve human relationships and understanding.
Normalisation also means that workers have more normal conditions of work which raises their status and self-respect and can lead to increases in efficiency and effectiveness. It also offers parents more normal choices for their children.
The normalisation principle is not a dream but is a reality brought about by hard-headed local authority committees.
He concludes with an Appendix summarising the Swedish experience to date. Swedish law No. 940 dated 15 December 1967 and coming into force on 1 July 1968 provides for a wider range of services and stresses that these services should be given to each person according to his personal needs. People who are on the borderline should be given the services they need.
Services may be provided in residential care or in the community, including day care and home support, and parents should have a choice of the services they will receive.
Adults will be able to live in the community and, where necessary, find work in sheltered workshops. Education, whether in special or normal schools and colleges and including pre-school and vocational education, is to be available to all up to the age of 21 or 23 in some instances.
Each local authority has to make the arrangements for its area, produce a local plan to meet the needs of people with learning disabilities within the framework of the new law and organise and supervise the provisions in cooperation with existing agencies and facilities.
At the time of writing, a refurbishment programme initiated in 1954 had improved the living conditions in many establishments, often by breaking down large units into smaller ones and, though a few institutions had not yet embarked on such a programme, he foresaw that they would no longer be regarded as an acceptable part of provision for people with disabilities.
He concludes with a few quotations from the Symposium of the International League of Societies for the Mentally Handicapped in Stockholm (1967).
The idea of treating people as normal and having normal expectations of them was not new; George Jepson and Katherine Allen had pioneered it with mentally ill people and a small number of people with learning disabilities at The Retreat in York over 150 years earlier (Glover, 1984) but they had done so within an institution which had good links with the local community in which residents were encouraged to participate and which most residents left within two years to return to the community.
What was new about the Danish implementation and Swedish development of the normalisation principle was its continuity and comprehensiveness; this is not just a short term treatment method but a long term approach to dealing with people with learning disabilities which can be applied to almost any excluded group and which will benefit staff as well as families by bringing greater normality to their lives.
The benefits of offering people in residential care as normal an experience as possible was to be demonstrated in English research which had been going on during the Scandinavian developments (King et al., 1971) but having one’s choices, wishes and desires taken into consideration and respected was a new idea; after all, from the 1914 Elementary Education (Defective and Epileptic Children) Act until very recently, it had been assumed in the UK that severely disabled children were uneducable and those less severely disabled had to be provided for in special schools. At the time even those without learning disabilities did not have their views taken into account (Page and Clark, 1977).
As for living in a bisexual world, as Wolfensberger (1969) had pointed out in the same collection, two of the commonest perceptions of people with learning disabilities were as sick or as subhuman, the latter having been reinforced in the UK by the adoption of the term `subnormal’ as recently as the 1959 Mental Health Act. The idea that people with learning disabilities might have sexual relationships was not really to be discussed until later in the decade after the study by Craft and Craft (1979) had been published; but if adults with learning disabilities are to have sexual relationships, it follows that adolescents with learning disabilities will need to receive education in sexual and personal relationships in order to handle sexual relationships as adults.
One of the major difficulties for those wishing to provide normal economic standards for people with learning disabilities has been finding ways of rewarding them which are commensurate with those of people without learning disabilities and yet ensuring that they do not fall into poverty. So far UK governments have side-stepped the problem by providing sheltered workshops for some and leaving the rest on benefits.
Standards of facilities similar to those others are accustomed to did not become mandatory until the 1995 Disability Discrimination Act. Nonetheless, it is worth reminding ourselves that Nirje did not expect that the normalisation principle would lead to everyone with a learning disability being treated or behaving in the same way; rather it would remove the barriers that prevented them from being able to live lives which were as normal as possible for them in their circumstances.
The Nirje–Wolfensberger Controversy
Nirje clashed early on with Wolfensberger, the advocate of normalisation in the US, over the extent to which normalisation should be prescriptive. In an article with Burt Perrin (Perrin and Nirje, 1985) he regretted using the word `norms’ in this paper because, he argued, Wolfensberger had misinterpreted this as meaning that people with learning difficulties should behave according to the norms of society and therefore that their behaviour should be modified until it became more like the norms of society.
Though there was no controversy because the architects were separated by a generation, the same difference of approach existed between George Jepson, the first head of The Retreat in York and John Kitching, the third head. At the start of the nineteenth century George Jepson tried to provide as normal an environment for people with a mental illness or mental disability as possible on the grounds that this would be less stressful for them and aid their recovery; in the middle of the nineteenth century John Kitching argued for behaviour management actively to improve recovery (Digby, 1985). Like George Jepson, Bengt Nirje did not come from a professional background; like John Kitching, Wolf Wolfensberger did.
Bank-Mikkelsen, N E (1969) A metropolitan area in Denmark: Copenhagen In R B Kugel & W Wolfensberger (Eds) Changing patterns in residential services for the mentally retarded chapter 10, (pp. 227-254) Washington DC: President’s Committee on Mental Retardation
Cobb, H V (1967) The attitude of the retarded person towards himself. In International League of Societies for the Mentally Handicapped (Ed.) Stress on families of the mentally handicapped (pp. 62-74) Brussells: International League of Societies for the Mentally Handicapped
Craft, A & Craft, M (1979) Handicapped married couples: a Welsh study of couples handicapped from birth by mental, physical or personality disorder London: Routledge & Kegan Paul
Digby, A (1985) Madness, morality and medicine: a study of the York Retreat, 1796-1914 Cambridge: Cambridge University Press
Glover, M R (1984) The Retreat York: an early experiment in the treatment of mental illness York: William Sessions
International League of Societies for the Mentally Handicapped (1967) Legislative aspects of mental retardation Stockholm: International League of Societies for the Mentally Handicapped
King, R D, Raynes, N V, & Tizard, J (1971) Patterns of residential care: sociological studies in institutions for handicapped children London: Routledge & Kegan Paul
Nirje, B (1967) Integrational know-how: Swedish programs in social training In The adolescent retardate (pp. 5-8) Israel: Israel Association for the Rehabilitation of the Mentally Handicapped (AKIM) Paper presented at the First Congress of the International Association for the Scienti?c Study of Mental De?ciency, Montpe1lier, France, 12-20 September 1967
Nirje, B (1992) The normalization principle papers Uppsala: Uppsala University
Page, R & Clark, G A (Eds) (1977) Who cares? Young people in care speak out London: National Children’s Bureau See also Children Webmag November 2008
Perrin, B & Nirje, B (1985) Setting the record straight: a critique of some frequent misconceptions of the normalization principle Australia and New Zealand Journal of Developmental Disabilities 11(2):69-74
Wolfensberger, W (1969) The origins and nature of our institutional models In R B Kugel & W Wolfensberger (Eds.) Changing patterns in residential services for the mentally retarded chapter 5, (pp. 59-173) Washington DC: President’s Committee on Mental Retardation