Stockholm, Sweden, April 10-12, 1984
By Prof. Sven Thiberg
The object of this paper is to direct attention to some general problems in and approaches to the design of research profiles and research strategies. I base my presentation on Swedish experience, but it is not my intention to present Swedish research or to hold Swedish research up as example or model. That Swedish research may nevertheless be of interest I consider to be due to the fact that we have had and still have a large volume of research and that we have therefore also encountered many of the problems that arise in everyday research.
View of man, view of society, view of research
What to research, how research resources should be used, and which disciplines and methods to use, are no self-evident questions. The "research policy" - both that at the national level and that of the research institute or individual researcher - is dependent on the view one holds of man, of society, and of the role of research. This perhaps sounds banal but it is important to point out. It also implies the reverse; that if one describes a country’s or an institute’s research policy, one is at the same time describing the value judgments and conceptions that characterize that society or institute.
The research which proceeds from the assumption that an individual with a functional disorder is precondemned to remain outside the life of the community will be directed to entirely other problems than that which assumes that disabilities can be eliminated or alleviated through community services. A system which accepts rejection and inequality invests its resources in a way different from one which builds on the participation of all and on the right of all to good living conditions. If one accepts that all people are social beings with latent resources that can be set free, one looks for other solutions than if one considers that certain people can be treated as isolated objects to be taken care of.
It is important in the light of this reasoning that research formulates its goals as clearly and honestly as possible. And that its formulations are amenable to discussion and criticism in an open research community. The demands accepted by the UN -"full participation and equality in the society in which you live" - are a challenge and an admirable basis for such a fundamental evaluation of research efforts.
A point of departure for research should be that disablement is a relation to the surrounding world, not a static phenomenon. This way of looking at the matter is especially important for those who are to engage in research concerning disablement and the physical environment. The problem can hardly be dealt with in a fruitful way unless it is accepted that disablement is created/affected by the form of the environment. In some cases this is self-evident: a staircase is an obstacle to wheelchair users. In other cases the relations between disablement and environment are more complicated, but they are nevertheless a suitable point of departure for formulation of the research task. It should perhaps be emphasized that the "relation" applies not only to the physical but also to the social environment. The attitudes, value judgments and expectations both of neighbours and of the disabled themselves also create or pull down barriers. Full participation and equality cannot become a reality if traditions continue which place persons with functional disorders in fixed roles and lock their freedom of action and their view of themselves. Nor unless charity and condescending solicitude give way to democratic rights to a self-dependent life.
According to Swedish experience, therefore, there is a distinct relation between our views of man, of society, and of research. I do not assert that there is a consensus on this point in the country, nor that all reach the same conclusions.
Some problem fields of immediate interest
I shall now briefly review some important fields for research, taking examples from present Swedish research. My intention is to show how many-faceted the subject is and how important it is that different efforts complement and support one another. I have excluded the medically oriented research that studies the causes and/or effects of functional disorders, treatment methods and results. Nor shall I go into the question of rehabilitation, even though it relates to the design of the environment. The possibilities of habilitation and rehabilitation are dependent in particular, of course, on the environment that the individual encounters thereafter, i.e. the readiness of the open society to receive and assimilate those who have been prepared for a life together with others.
Studies of life situations
No sophisticated research is needed to show that persons with functional disorders have greater difficulties in coping with working life and are restricted in their freedom of movement and in their means for participation in the benefits offered by society. It may nevertheless be important to deepen our knowledge of the deficiencies in equality and of the social and economic consequences of functional disorders.
Such studies are being made in Sweden, both as complement to overriding studies of the entire population - standard of living studies - and in the form of studies in depth of the conditions of different categories or groups.
As regards this type of research, the comment should be added that to altogether too great an extent it may encounter negative conditions, and that it altogether too little takes note of the resources possessed by the exposed groups and which external conditions prevent them from developing.
When these studies have the form of general surveys with a broad but shallow approach, they can be rightly criticized for giving quantitative but little qualitative information. Quantitative data, e.g. on the extent of certain defined functional disorders, may have a strategic significance. It has, for example, surprised many people that the number of individuals in Sweden with considerable locomotive problems is so large that one cannot speak of marginal groups. On the other hand, statistical data can be used with the opposite intention - as counterargument to general environmental measures.
Studies of life situations are proper instruments for acquiring knowledge of changes over time and for evaluating measures taken. They may relate to such diverse matters as the effects of technological development in the country, of directed economic support, of general changes in the labour market, and so on.
If the point of departure is accepted that disablement is a relation, one must also demand that measurements of life situations place the measured in relation to important environmental factors. Housing standard, transport service, labour market, access to recreational and cultural events decide the possibilities the individual possesses to influence his life situation. As the relations are complicated, they can hardly be studied on a superficial level. Quantitative studies must be supplemented by studies in depth, often on a small scale but with concentration on ’soft data relating to individual cases.
Studies of individual prerequisites
Our longest tradition and perhaps our best store of knowledge today is in research into the physical needs and problems of individuals with different types of functional disorder.
In a class of its own stands the research into the space requirements, extent of mobility and force of propulsion of wheelchair users. This research early became anchored in medical disciplines and has been a natural subject of study, owing to the relative " simplicity" of the problems involved. As the studies have been conducted in parallel at many institutes in the world, there is an abundance of documentation. It has constituted a basis for international standardization both of aids and of specifications for building and furnishing design to meet the needs of wheelchair users.
It must not be believed on this account that the problem has been "solved". There are many differences of opinion. This is not particularly surprising - they are due to the different underlying assumptions, to differences in the interpretation of the results and in the weighting of various factors that is done prior to the final recommendation. There are possibilities of some clearing up in this tangled undergrowth, but we must weigh the resources required for such an analysis against the usefulness of the results achievable.
In other fields the level of knowledge is far lower. The capacity of a person with some form of defective vision or hearing to find his bearings in the surrounding world, and how this capacity is affected by external factors, have not been nearly so well investigated as the problems of wheelchair users.
A deeper knowledge is needed of environmental characteristics that can support the orientational capacity of persons with mental disorders or deterioration.
In the allergy field a race is taking place between research into allergy effects and the introduction of new materials structures and air-conditioning systems.
Our experience in Sweden gives rise to a split attitude to the research needs in these fields. On the one hand we seek better knowledge. On the other, unutilized knowledge exists for application in practical design of the physical environment.
Studies of general measures
As outlined in Hanne Weiss-Lindencrona’s paper, we have legislation in Sweden that is intended to ensure general access to the common environment and - in the long term - for visits to all dwellings. She also states that there are reservations and limitations in these objectives. There is no reason for idealization of the Swedish situation.
The legislation and the discussion around it, however, has had the advantage that the interest and efforts have been increasingly directed to general measures. Solutions that can be adopted over the "entire" environment have emerged.
Powerful financial interests are affected, even though it has not been demonstrable that general measures entail major extra costs. It is important that the requirements are optimized and that their economic and technical consequences are continuously studied.
Changes of "practice" are always perceived as disturbing. It is therefore important that they are well defined and substantiated and that new requirements are perceived to be warranted and well considered. Numerous studies and experiences from the field exist as basis for the rules now applying to general environmental measures. On many points the store of knowledge is scarce and in need of reinforcement. This applies, for instance, to the orientation problem. On the other hand, it is not always advisable to await better data, especially not if it is a matter of keeping pace with a rapid rate of reconstruction, as at present, for example, in Sweden.
The implementation of general measures requires that new knowledge and new solutions must be everywhere applied. This is an information problem and a matter of increased professionalism. It is also a supervision and follow-up problem. This supervision must function properly to ensure that the goals are realized. It is therefore important that research is devoted to the question of how regulations and recommendations are complied with and how they function in reality. With such knowledge the measures can be made more effective and compliance guaranteed.
Weak links in the general accessibility system are today the external environment and transport systems. The deficiencies in the design of public transport are partly compensated for by a well developed transportation service for disabled persons. Greater efforts should be made to improve the regular public transportation services.
Studies of individual adaptation measures
The higher the level of general adaptation that can be achieved in the common and private environment, the less become the needs for individual adaptation. There is nevertheless reason to design the general environment so that, without major intervention, it can be changed or additions made to permit individual adaptation. In this case a careful system of fits may be required between individual, aid and environment.
In the case of dwellings, a normal dwelling should have a basic structure such that, without expensive alterations of skeleton and installations. it can be rebuilt for a resident with a functional disorder. It may be a matter of a new and adapted kitchen furnishing, of combination of toilet and bathroom into a larger room with suitable equipment, and/or of installation of signalling systems.
When ordinary dwellings can be adapted in this way, the need to build special forms of housing is no longer so urgent. Nor is there reason to construct institutional buildings. The degree of normalization is dependent principally on whether the necessary service can be given in dispersed form and adapted to the individual.
There is intense R&D and experimentation in this field.
A first step in such "de-institutionalization" has taken place for mentally retarded persons. Also multi-handicapped persons and those with great need of assistance have proved capable of coping with integrated living. They often grow to a greater degree of independence than we had believed possible. The FOCUS movement in Sweden was another breakthrough for the idea that
persons with grave orthopaedic handicaps could live a normalized life in their own homes. In this field, development has progressed to a still greater degree of integration.
The right to work is fundamental. Persons with functional disablement can do thoroughly qualified work provided that the tasks and workplace are adapted to their capabilities. Here again there is a need for engagements in which general knowledge is combined with individual solutions. With creativity and inventiveness, most specific problems can be solved. The organization of places of work and of transport and other services so that persons with functional disorders can use their intellectual resources, be a part of the community, and have a stimulating working life is the most important task for our society today. This requires research, development, and systematic collection of experience from trials in different forms.
Development work and experiments
Theoretical and laboratory studies are valuable in certain spheres. There is still a great need for fundamental research and for systematic comparisons between alternative solutions to technical problems. But at the desk and in the laboratory one cannot make all-round assessments or see different principles for solutions in a broader context.
This leads to two conclusions. One is that studies made in the laboratory must have a strong backing from experience from the field, The other is that development work and trials in the field must be used for bringing experience to all concerned.
Work in the field requires new types of capability in researchers, but also openness and a willingness to collaborate on the part of the field workers. This means that the boundary line between research and development is partly eliminated. It also happens that the boundary line can no longer be maintained.
In other fields of social science research, the concepts "action research" and "participatory observations" have been coined for crossing the boundary between observation and involvement. These concepts have the same relevance in research concerning the conditions of the disabled. It is especially important to make use of the sporadic, sometimes unsystematic, but valuable experience of practical cases that exists in the field. Methods must be developed which combine nearness and empathy with reasonable requirements of perspective and objectivity.
Overall economic studies
Many of the proposals that have emerged in recent years and which have led to increased integration and participation have been counteracted by attitudinal obstacles. It is a difficult process to get away from ingrained attitudes to disablement. Institutional thinking and overprotection are still serious obstacles to independence and full participation.
But cost aspects too - and sometimes staffing aspects - have been an obstacle. "It’s too expensive is a common argument against traditional solutions. It is important to be able to meet reasoned cost arguments with factual information, Cost assessments must be made at the proper level. Suboptimizations which do not take account of the overall economic picture must be avoided. Increased buildings costs can, for example, be compensated for by reduced staff costs if the design of the environment enables the individual to cope on his own.
Apart from the value of increased independence, which cannot be calculated in monetary terms, the adaptation of the environment may lead to a lower social cost. The problem we often encounter is that different cost items are borne by different authorities, which therefore have reason to defend their limited part of the entire expenditure. This is a critical problem in Sweden, with our involved administrative and economic division of responsibilities. Research can provide a basis for reforms in this respect.
The anchorage of research
The research I have discussed is chiefly "applied" research, the results of which should be directly usable in practice. We researchers are often disappointed that the results of our efforts meet with so little attention and are put to so little use, Naturally this may be because they have no real relevance, because they are not needed or do not fit into the reality for which they are intended. But it may also be because the channels are poor from the research out to those who make decisions and work on concrete tasks in planning and building. There are several ways of attacking this problem.
The traditional way is to increase the quantity of information, to "press upon" one’s target groups the information one considers they need. That way is not particularly successful. Most decision-makers are today surrounded by a "hum" of information. They are more inclined to close their ears than to accept new knowledge. Especially if the information is contradictory, if it requires analysis and evaluation, it is difficult to receive.
This brings up a more profound question - about the anchorage of research among those whom it chiefly concerns. I think it is extremely important to deliberately attempt an anchorage in the groups who directly benefit from it. And this must be done in at least three stages - when the problems are to be formulated, when the results are to be evaluated, and when they are to be disseminated.
This anchorage is poorly developed in our country, as in others. I guess that our disabled persons organizations hardly know
what research projects are going on, even less have they influence on the choice of problems to study, a chance to evaluate the conclusions drawn or to state their opinion as to how, by whom, and when the results should be presented.
It is the responsibility of researchers professionally to attack and solve problems. But the concept of "freedom of research must not be interpreted to mean that the researchers entirely of their own accord shall pose the problems they are to solve. An interplay is needed in which the formulation of problems based on concrete experience is set off against assessments of whether and how the problems can be dealt with by research and of the way in which the results shall be incorporated in the quantity of knowledge they are to supplement or supersede.
On this point there is reason to refer back to the fundamental objective of "full participation and equality". I think that, to a greater extent than at present, research should be a tool in the activities of the disabled persons organizations. This is not to say that it should be so dependent on the organizations that it cannot also uphold interests and investigate problems which for various reasons they consider unimportant or irrelevant.
Nor have I committed myself to the view that there should be special institutes or organs for research concerning the conditions of the disabled. I am rather inclined to believe the opposite.
Integration should apply in this field as well. It is important that other social science research should have contact with the issues we are concerned with. It is also important that research on behalf of the disabled should partake of the rapid development of outlooks and methods that is taking place in the general research community today. All too strict specialization may counteract the openness that is needed for this to be brought about.
A summing up
My presentation is a subjective description of a number of issues which I consider relevant to the discussion we have before us. I build upon experience of Swedish research on behalf of the disabled over a period of more than 20 years. But the last years’ experience of renewal and emancipation in the disabled persons¥ movement also confirms my view of research as a force for change in society.
I hope that the work of CIB/W 84 can advance our positions and that, through our international engagements, we can bring about the breakthrough which on the national level or in our own small groups we cannot do.
Summary of the seminar’s discussions, edited by Adolf Ratzka, Ph.D.
The results of the meeting’s working group and plenary sessions can be summarized as follows:
Procedural Matters
It was resolved to change the Working Commission’s name to "Building Non-Handicapping Environments". The new name is to underline the fact that the built environment presents one of the worst handicapping conditions for people with disabilities today.
A plan of work is to be drawn up in the form of a rolling three-year program. For projects sponsored by CIB/W 84 resource persons should be appointed who together with the Coordinator are responsible for implementation and reporting at the next W 84 meeting.
Overall Objectives for CIB/W 84
The meeting adopted the following overall objectives for
CIB/W 84:
Scope of Future Work
In order to expedite application of existing knowledge and to avoid duplication of efforts, CIB/W 84 is to stimulate international exchange and cooperation in the following areas:
Guidelines for Future Work
The meeting resolved that the future work of CIB/W 84 be governed by the following guidelines:
List of Priorities
The meeting agreed upon the following list of priorities for the future work of CIB/W 84:
List of Participants, CIB/W 84, April 6, 1984
Aalders, Joep
Ministerie van Welzijn, volksgezondheid en Cultuur
Posthus 439
2260 AK Leidshendam
Holland
Adler, Peter
Tekniska Högskolan BFL-A
Fack
100 44 Stockholm
Sweden
Battaini-Dragoni, G
B.P. 431 R6 (Council of Europe)
67006 Strasbourg Cedex
France
Bergh, Steiner
Norwegian Building Research Institute
Box 322, Blindern
Oslo
Norway
van Boven, W,
Tollenslaan 8
2111 CR Aerdenhout
Holland
van Ditmarch, L
Tollenslaan 8
2111 CR Aerdenhout
Holland
Eckered, Mikaela
BFR
Sankt Göransgatan 66
112 30 Stockholm
Sweden
Etzkorn, Helmut
INTEG-DORTMUND, Ingend im Reidesbund
Esch Str 13
4400 Münster-Wolbeck
West Germany
Grunewald, Karl
Socialstyrelsen (S5)
106 30 Stockholm
Sweden
Gronewegen, Hugh
Arch Bureau E.G.M.
Postbus 298
3300 AG Dardrecht
Holland
Hallberg, Gun
Tekniska Högskolan BFL-A
Fack
100 44 Stockholm
Sweden
Hansson, Lisa
White & Partners AB
Box 2119
103 13 Stockholm
Sweden
Herkelmann, Friedrich Wilhelm
INTEG-DORTMUND, ingend im Reidesbund
Lindenhosterstrasse 192
D-4600 Dortmund 16
West Germany
Holmstedt, Sven
Handikappinstitutet
Box 303
161 26 Brornrna
Sweden
Höglund, Roland
Handikappförbundens Centralkommittee
Box 36033
100 71 Stockholm
Sweden
Jahlenius, Leif
The Handicap Institute
Box 303
161 26 Bromma
Sweden
Jansen, Diederick
Ministry of Housing and Physical Planning
Boerhaavelaan 5
Kr. 826 2713 HA Zoetermeer
Holland
Johansson, Gunnar
DHR
Box 2053
103 12 Stockholm
Sweden
Jones, Guy
Chalmers THS
Bostadsplanering
412 96 Göteborg
Sweden
Lagerwall, Tomas
Swedish Institute for the Handicapped
and Rehabilitation International
Box 303
161 26 Bromma
Sweden
Lange, Tore
Norwegian Building Research Institute
Box 322, Blindern
Oslo
Norway
Larsen, Jörgen
Tekniska Högskolan BFL-A
Fack
100 44 Stockholm
Sweden
van Leer, Jan
Tollenslaan 8
2111 CR Aerdenhout
Holland
Lindencrona, Hanne
Bostadsdepartementet
103 33 Stockholm
Sweden
Lindqvist, Bengt
Synskadades Riksförbund
Sandborgsvägen 52
122 88 Enskede
Mathur, Vinay Kumar
Central Building Research Institute
Roorkee-247 667 (U.P.)
India
Månsson, Karin
Handikappinstitutet
Box 303
161 26 Bromma
Sweden
Paulsson, Jan
Chalmers Institute of Technology
Department of Housing Design
412 96 Göteborg
Sweden
Penton, John
Penton & Smart
8, Specer Street
St. Albans, Herfordshire
England
Ratzka, Adolf
Tekniska Högskolan BFL-A
Fack
100 44 Stockholm
Sweden
Sandborg, Eva
Statens handikappråd
Regeringsgatan 67
111 56 Stockholm
Sweden
Smedshammar, Hans
Tekniska Högskolan BFL-A
Fack
100 44 Stockholm
Sweden
Sperling, Lena
School of Craft and Design
Göteborgs universitet
Kristinelundsgatan 6-8
411 37 Göteborg
Sweden
Sutinen, Olle
SPRI
Box 27310
102 54 Stockholm
Sweden
Thiberg, Alice
Konsumentverket
Box 503
162 15 Vällingby
Sweden
Toyama, Tadashi
Tekniska Högskolan BFL-A
Fack
100 44 Stockholm
Sweden
Wachsner, Göran
BST
Drottning Kristinas Väg 73
114 28 Stockholm
Sweden
Yoshida, Clara Ako
Naito Architectural Office
Kyoritusukaikan 9F
4-6-19 Kohinata
Bunkyo-Ku Tokyo
112 Japan
Åhrén, Per
Bostadsdepartementet
103 33 Stockholm
Sweden
Örnhall, Hans
Planverket
Fack
104 22 Stockholm
Sweden
Coordinator
Thiberg, Sven
Building Function Analysis
Royal Institute of Technology
Fack
100 44 Stockholm
Sweden
Secretariat
Gard, Mai
Building Function Analysis
Royal Institute of Technology
Fack
100 44 Stockholm
Sweden
BFL/KTH Staff
Brugnoli, Lorenzo
Grossman, Maj-Britt
Nyberg, Marianne
Schöldström, Monica
Siltberg, Clas
Sundström, Kjell
Österman, Barbro