Ericsson

TWO PERSPECTIVES ON THE LIFE OF THE PERSON WITH INTELLECTUAL HANDICAPKent Ericsson Patricia EricssonThis paper was presented at the AFMR Conference (Asian Federation for the Mentally Retarded) in Bangkok, 1989ResearchTheme Disability & SupportDepartment of EducationUppsala UniversityUppsala, Sweden

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1TWO PERSPECTIVES ON THE LIFE OF THE PERSON WITH INTELLECTUAL HANDICAPKent Ericsson Patricia EricssonTHE NORMALIZATION PRINCIPLE: A NEED FOR CLARIFICATIONIn the task of providing support to persons with intellectual handicap the ideaof the "normalization principle" has had substantial importance during theseventies and eighties. Following its presentation in the international debate ithas had extensive and deep reaching consequences. During these two decadesit has greatly influenced the socio-political debate on what sort of life thesepersons should live in society and what type of service is needed in order torealize that life.At the same time many attempts have been made to work for "the normal life"so that which persons with intellectual handicap ask for can be realized. Thereare many examples of how difficult it is to change a service organisation basedon institutional principles so that it can develop and provide services whichcontribute to the participation of the individual in community life. Because of the extensive debate on the "normalization principle" the concept,initially difficult to comprehend, has become even more complicated. Themany interpretations have created a diffusive picture. To find the realimplication one must go to the original sources. A SOCIO-POLITICAL CHANGEThe idea behind this transition from institutional to community services canfirst be found in the debate on the nature of the welfare society and the role ofthe handicapped. It began at the end of the thirties and was concerned withthe question of how a society should be formed which could guarantee its citi-zens good living standards and welfare. As a means to achieving this anexpansion and modernization of social services was recommended.At the same time the question was raised as to how social services in a welfaresociety should be developed for persons with handicap. Should theinstitutions, based on a 19th century philanthropic tradition, continue to beresponsible for the support of society to handicapped persons, or should theybe given the right to avail of the provisions of the welfare society?The latter choice, to let a modern social service bear responsibility for personswith handicap was termed the "normalization principle" by the publiccommittee which in 1945 suggested which measures should be taken to ensurea better life for persons with handicap. However, a distinction was made between persons with a handicap who were"partially ablebodied" and those who were "incapable of work". It was only theformer group, persons with a mild handicap, who were recognized as having aright to avail of the resources of the welfare society, whereas the others werereferred to continued institutional care.

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Kent Ericsson & Patricia Ericsson: Two perspectives on the life of the person2In this changed official position the implications of a new socio-political viewwere expressed. The reason for setting up the committee, and the task given toit, was to find ways of providing a better life for these persons. The position ofthe committee claimed, first and foremost, that instead of institutional lifethese persons should be given the opportunity to experience "the normal life",i.e. the life lead by persons without handicap.Another official view was that the resources and amenities of the welfaresociety should be used to provide support and service to these persons. Thetype of assistance developed for persons without handicap should also beavailable for those with a handicap. To accomplish this these persons neededto be given the right to claim similar resources. The organizations responsiblefor implementing the welfare society, must as a consequence, carry out thechanges necessary if the services were to meet the demands made by personswith handicap. There is also a third point in the official view which concerns this socio-political change. How persons with handicap are regarded is also expressed inthe motivation of the committee. It is a question of human rights for personswith handicap to be able to avail of the welfare service, and that these rightsare basic to the democratic ideal (Ericsson, K. 1987).THE SOCIAL ROLES OF PERSONS WITH INTELLECTUAL HANDICAPTwo of these viewpoints usually occur in the debate on the implications of the"normalization principle". The third aspect, which motivates this dramaticchange in relations between society and persons with handicap, takes a standon a very critical issue, namely the question of what social role is conferred onthese persons. It was Wolfensberger (1969) who gave particular attention to the relationbetween the social role conferred on persons with handicap and the way inwhich society chooses to organize and provide measures for them.He points for example to the time when these persons were regarded as "HolyInnocents" and it was the task of the church to provide for them. When thishandicap-group were considered to consist of "subhuman organisms" mea-sures could be accepted which did not recognize the human needs of thesepersons. The large institutions, with an environment and routine which wasimpervious to the needs of those residing there illustrate his point well.When the person with handicap was perceived as a "sick person" it was naturalthat provision was made for them within the medical services, in hospitalbuildings and with medically trained staff.In an organisation which puts emphasis on the persons ability and desire forpersonal development the position given the teacher, the trainer and thetherapist will be greatly enhanced. SOME SOCIAL ROLES FOUND IN SWEDISH SERVICESNo proper analysis, comparable to that presented by Wolfensberger, has beenmade over the social roles conferred on persons with intellectual handicap inSweden. There is however some manifestation of the use of social roles whichmakes it possible to characterize some such roles. It is not uncommon that onehas more or less inexplicitly accepted a certain role. It has sometimes evenbeen relatively well characterized.

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Kent Ericsson & Patricia Ericsson: Two perspectives on the life of the person3Qvarsell for example has pointed to a motive which influenced the content ofinstitutions established during the 19th century. As a reaction to what wasconsidered the "negligent" family, which no longer could care for its children,it was regarded as desirable that conditions within the institution as far aspossible resembled the traditional family including the just father figure. Theperson with handicap became the "child" that would receive its upbringingwith the "family" of the institution. Söder (1978) has shown how one during the period between the wars regardedthese persons as a "threat to society". It was thus logical that society took thenecessary measures to protect itself from these groups. In this situation it was anatural measure to introduce sterilization practices. In this one findssimilarities to what Wolfensberger termed the "subhuman" element. Onethereby denies these persons their natural needs and rights. It is also duringthe thirties that the medically orientated model of services is developed,largely through the establishment of the special hospitals. The view of theperson with intellectual handicap as being a patient is a role established duringthis period.In the 1954 Act (SFS 1954:483) one can find two roles. A distinction is made between the role of "pupil" and "inmate". The former is associated with thosewith a mild handicap, those known as "educable" and the latter those with asevere handicap, previously regarded as "uneducable".One who clearly indicated the importance of clarifying which role is conferredon the person with intellectual handicap is Walujo (1985) whose SIVUS-method characterizes the person with intellectual handicap as "an individualunder development". This role has many similarities with Wolfensberger´sconcept of the individual with intellectual handicap as being "a developingperson".Regarding the person with handicap as a "citizen" was a role which had acritical impact on content of the public enquiry concerning the person withhandicap in the welfare society, which was presented in a report from the"Committee for the partially ablebodied". It was there clearly stated that it wasa matter of "democratic rights", which even applied to persons with handicap,that formed the basis for the suggestion that even they should have access to"the normal life" and to the social services of the welfare society (Ericsson, K.1987).For Ericsson and Ericsson (1987) this "role of citizen" became a central issue inan analysis of the function of housing and a home for persons with intellectualhandicap.It is difficult to characterize these roles in any other way than by a descriptionof certain "types". Some finer details can be lost and other characteristics maybe too coarsely described. But these various roles, often unconscious, can affector lie behind many of the views held but seldom openly expressed. They aretherefore often rather diffuse when described. It is seldom that their signi-ficance and consequences are clearly formulated. Amongst other difficulties is the fact that even this aspect of the field, thequestion of social roles, is also undergoing development. This makes it evenmore difficult to find distinctive illustrations.A further difficulty in describing these various roles is the long existingdifference which has been made between those who were regarded as"educable" and those considered "uneducable". With a more differentiated

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Kent Ericsson & Patricia Ericsson: Two perspectives on the life of the person4analysis one would probably find that different roles have been conferred onthese two groups.The fact that persons from this handicap group have been conferred differentroles shows that their situation and problems can be seen in different ways.Consequently one can say that there are several perspectives from which onecan describe persons with intellectual handicap and their situation.INTELLECTUAL HANDICAP FROM DIFFERENT PERSPECTIVESMercer (1965) made use of the concept of perspective as a means of bringingabout a changed view on intellectual handicap. She confronted twoperspectives when she described the clinical and the social. While the former isbased on a view that the person with intellectual handicap is primarilycharacterized by his deviancy, the other emphasises intellectual handicap as anatural aspect of society. The latter view is the more relativistic one and thatwhich she advocates. Kebbon (1979) found that the question of perspective was an importantexplanatory factor with regard to the differing views held by professionalgroups on various critical issues in the field. Bio-medical, psychological andsocial approaches lead to varying perspectives from which the problem ofintellectual handicap can be described and tackled. The simple explanation isof course that these different disciplines choose different approaches inviewing the problem. The choice of perspective has therefore consequences:"Each perspective has its focus and its corresponding blind spots.More specifically it has a selective, a formative and a neglective effect,which to a certain extent determine what is seen, how it is seen andwhat is not seen. Furthermore it predisposes for different modes ofaction, i.e. in the planning of care and services".Ericsson and Ericsson (1987) also found that differences in what was regardedas a good housing and a home for persons with intellectual handicap could berelated to the perspective chosen. When Mercer's concept is used and theperson is viewed from a clinical perspective and regarded as being in aconstant state of development, the integrated residence is seen as a trainingunit which provides good conditions for treatment and development. Aresidence whose purpose is to achieve personal development leads to demandson the person to move on to a new form of housing in pace with increasedpersonal competence.From a social perspective the person with intellectual handicap is insteadregarded as being a citizen with a right to housing. A consequential approach is acceptance of the task of finding or creating lifeenvironments which provide a residence with access to neighbourhood andcommunity. The residence is equipped as a home where one can live withoutthe anxiety of possibly being forced to move. THE "PERSPECTIVE OF COMPETENCE" One can describe two perspectives which have current significance in thepresent Swedish service system. The first is here termed "the perspective ofcompetence" as it emanates from the roles of "pupil" and "inmate", roles closelyassociated with the institutional organisation of services.

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Kent Ericsson & Patricia Ericsson: Two perspectives on the life of the person5The subject under discussion is a person with an intellectual handicap and thusa person with a function, developed only to the degree that attains a low levelin relation to others. An attribute of an intellectual handicap is that the persondoes not have all the social abilities which are required in order to cope withthe ordinary demands of daily life. Severely handicapped persons also oftenhave an "additional handicap" which involves a low functioning level even inother respects for example sight, speech or motor abilities. This furtheremphasises the view of the person as one lacking in competence.Seen in this perspective the focus is put on the "lack of competence" and thisbecomes the main issue. Finding and taking adequate measures to increase thepersons "competence" becomes the dominating feature if the situation isviewed from this perspective.The measures which are natural to take are those which influence the limitedfunctional level of the person. These measures can of course be of varioussorts. Pedagogical measures are intended to develop educational abilitiesassociated with school, whereas social measures, for example social trainingprogrammes, can be used to develop the person's social ability. Psychologicalmeasures can be directed towards personality development or to treat possibledeviant or undesirable behaviour and medical intervention can either treatorganic disorders or health issues.These choices naturally influence which places or environments in acommunity are chosen to be used in the provision of services, be they schools,day activity centres, therapeutic centres or premises where medical and healthservices are provided. The category of professional staff chosen is alsodependent on which type of measures is to be provided. Obviously the choiceof goals for services and the means to reach them is also subject to theperspective in which they are viewed. Common for these various types of measures, when related to the formation ofthe services provided, is that they aim at having a developmental function forthe person.In the competence perspective the person with intellectual handicap is alwaysa receiver of developmental measures. Seen as a person with "lack ofcompetence" one is placed in a passive and subordinate position in relation tostaff whose task is to have knowledge of, and responsibility for providing thedevelopmental measures.When does the person with intellectual handicap achieve access to aparticipation in society? In a service system based on this perspective it isachieved first when the individual has reached a level of ability to be able tocope with, be "mature" enough for, the demands which he/she is expected tomeet. Participation in society should also be regarded as meaningful for theindividual, and this occurs when the experience has developmental effects. One can say that requirements are made on the individual if he/she is to beallowed to participate in community life: the person is expected to have certaincapabilities! The "burden of evidence" is thereby put on the person with handi-cap who is obliged to qualify for or earn his right to participation.THE "PERSPECTIVE OF THE CITIZEN" The other perspective described, and here called "the perspective of citizen", isderived from the view of the person with handicap as having the role of"citizen".

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Kent Ericsson & Patricia Ericsson: Two perspectives on the life of the person6The basis for this view is a recognition of the person as a fullworthy citizen insociety irrespective of kind or degree of functional level. Behind this liedemocratic egalitarian ideals on everyone's right to a good life and to access tothe services offered by a society based on such ideals. The concept ofintellectual handicap is thus regarded as a normal phenomena. It is a normalprocess in a society that children are conceived, born and grow up, a processwhich however is associated with risks, of which some may lead to lowerintellectual functioning and to handicap.The dominating feature of this perspective is that the person is given apossibility to live the normal life as lived by persons without handicap, i.e. in afamily and home, but also with nursery facilities, schooling, and employment,as well as access to the services in the community which are availed of bypersons without handicap. The organisation responsible for realizing theseconditions must make use of the means available if the "normal life" is to bemade possible. The means available for the provision of services seen in this perspective aremeasures such as the adjustment of housing to the needs and wishes of theperson with handicap. Similarly means are needed to chose day activities sothat they are meaningful and that premises and environments, where theseactivities can take place, are locally accessible for the person concerned. Inconsequence this implies social measures directed towards the environmentsmade use of by these persons both now and in the future.From this perspective it is naturally also desirable that personal measures alsoare available i.e. measures which contribute to the development of the personin the functions where there is limited ability. The difference between "theperspective of citizen" and "the perspective of competence" is that the personwith handicap has influence over when, where and how these measuresshould be offered. It is just the question of the person's influence over his situation which is thecritical issue in this perspective. This also influences staff roles. Staff within theservices become providers of service and support but on the terms of theperson concerned. In addition to the traditional skills held by staff, concerningthe person's limited functioning levels, the staff also need to be knowledgeablein social matters like housing, employment policies and local social services.Participation in the life of society, seen from this perspective, becomes a right,with a "democratic" motive, which is associated with the perception of theperson as a fullworthy citizen. A TWO-DIMENSIONAL DEVELOPMENT OF SERVICES.This way of understanding the social political idea implied by thenormalization principle bears certain consequences. Foremost is the question ofa changed life situation for the person with intellectual handicap. This necessi-tates working for a greater participation in the life of society instead of beingrestricted to institutional life as previously. This also points to consequences for the development of the services. To beginwith it concerns the type of service i.e. substituting institutional services withintegrated. This includes the question of the closure of institutions and thetheoretical and practical development of services which can contribute to anincreased participation in the life of society for persons with intellectual handi-cap.

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Kent Ericsson & Patricia Ericsson: Two perspectives on the life of the person7The view of the normalization principle as presented here gives particularattention to the aspect that as a consequence a change in the content of theservices must take place. How services are described and thus how one chosestasks, questions to be answered and methods to be developed are allassociated with the perspective chosen. Depending on the point of origin,institutional or integrated services, two perspectives can be distinguished andthese are here called "the perspective of competence" and "the perspective ofcitizen".The task implied in a change of services should therefore also lead to a changeof perspective. Measures and methods are thus needed in order to achieve thischange of perspective. One who gave attention to this question was Wolfensberger (1983), whotermed the task "valorization". The expression is developed from the term"value", implying that the value given a person with intellectual handicapshould change. The task involved is to achieve a change so that personspreviously devalued be recognized as fellow human beings. Wolfensbergeralso points to a series of measures which can be taken in order to achieve such"valorization"The dominating consequence of this view on services is that there needs to be atwo-dimensional approach to the development of services if a change is to takeplace in the lives of those with intellectual handicap. Both the development ofservices from an institutional to an integrated form and a change of contentfrom a "perspective of competence" to a "perspective of citizen" is needed.This two-dimensional development can however in no way be taken forgranted. One can find a situation where the form of services have beenchanged without a change in perspectives taking place. This can be oneexplanation to why the development of integrated services have not alwaysachieved the results expected. Evaluation studies have for example shown thatthe realization of the integrated service model lacks many of the componentswhich one would expect (Kebbon, L. et el, 1981). This can also be an explana-tion to why the closure of institutions does not always lead to the fulfilment ofthe goals set, when persons move from institutional to integrated services.The situation can arise that some integrated services can work from the"perspective of competence" whereas others have an approach based on the"perspective of citizen". With such differing approaches there is a risk thatdifferences in goals and methods can give rise to conflict. In an analysis ofresidential services Ericsson and Ericsson (1987) have shown that one can findtwo approaches to the question of housing and a home which derives fromdifferences in perspective and role. DISCUSSIONServices for persons with intellectual handicap are in a process of developmentwhich has been greatly stimulated by the socio-political thinking expressed inthe "normalization principle".These ideas are however in many respects diffuse and unclear and havetherefore given rise to much debate and many interpretations. This can also beseen in the variation in existing practical solutions. Even theoretically manydifferent ways have been sought to develop and formulate the idea. There istherefore still a great need for analysis.

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Kent Ericsson & Patricia Ericsson: Two perspectives on the life of the person8The most generally known change brought about in the spirit of thenormalization principle concerns the nature of services and primarily theorganisation of institutional care, its closure and the development of newservices as an alternative to the institution.In the analysis presented here it has been pointed out that there is even a morecomprehensive change of content, the origin of which is found in the differentviews held on the role given to the person with intellectual handicap.This situation has been expressed in terms of "the perspective of competence"and "the perspective of citizen". The task to be carried out involves a change ofvalues and frame of reference which results in replacing the "competenceperspective" with the "perspective of citizen".The concept "integrated services" cannot therefore be seen as an unequivocalterm, but must instead be developed and given form and content. If con-sciousness is lacking there is always a risk that new problems and conflictsarise when new forms of service are created, while the purpose has been toprovide positive alternatives in exchange for the negative experiences of thelarge institutions.The life-situation for the person with intellectual handicap is cruciallydependent on the choice of perspective made in developing of new services.The point where these two perspectives most deviate concerns the question ofthe persons's influence over his own life. It is first from the "perspective ofcitizen" that this aspect becomes apparent and self-evident. The influence overa person's own life-situation risks being limited if clarity does not existconcerning the necessary changes in the content of the services. REFERENCES.Ericsson, K. 1987: Services to further the participation of mentally retardedpersons in society. Uppsala J Med Sci, suppl. 44:217-220.Ericsson, P. Ericsson, K. 1987: Community services: Housing and a home.Contribution to AFMR Congress, Singapore. Uppsala: Mental RetardationResearch Project.Kebbon, L. 1979: Perspectives on mental retardation. Contribution to IASSMDCongress, Jerusalem. Uppsala: Mental Retardation Research Project.Kebbon, L. Granat, K. Ericsson, K. Lörelius, J. Nilsson, A-C. Sonnander, K.1981: Evaluering av öppna omsorgsformer. Stockholm: Liber förlag.Mercer, J. 1965: Social system perspectives and clinical perspectives: frames ofreference for understanding career patterns of persons labelled as mentallyretarded. Social Problems, vol. 13, 19-32.Söder, M. 1978: Anstalter för utvecklingsstörda. Stockholm: Stiftelsen ALA.Walujo, S. 1985: SIVUS - en gruppdynamisk metod. Socialstyrelsen redovisar1985:2. Stockholm: Socialstyrelsen.Wolfensberger, W. 1969: The origin and nature of our institutional models.Washington: President's committee on Mental Retardation.

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Kent Ericsson & Patricia Ericsson: Two perspectives on the life of the person9Wolfensberger, W. 1983: Social role valorization: A proposed new term for theprinciple of normalization. Mental Retardation, vol. 21(6), 234-239.SFS 1954:483 Lag om undervisning och vård av vissa psykiskt efterblivna.