Social research has been traditionally understood as an empirical inquiry on various aspects of society, mostly with a practical focus of solving social problems (Bailey 1994, 4). The focus on practical issues has been pronounced in social studies on disability. Indeed, the concept of disability has been so closely associated with the public policy of disability that even the definitions of disability have been strongly influenced or even defined by public laws. The main dilemma of disability from the public policy perspective has been to draw a boundary between two distributive systems, one based on work and another one on need (Stone 1984). The society is expected to help those members in need who cannot maintain themselves with their own work. Here the society faces the problem of how to help people in need without undermining the more basic principle of distribution according to work. Along with these lines, social research on disabilities has involved different foci. As will be described later, its focus has shifted from a social control of deviant behaviour to vocational and other rehabilitation, and finally to guaranteeing full citizenship for persons with disabilities.
Social research on disability should not be mixed with a more recent concept of Disability Studies. The latter emerged during the early 1980s as a field of study on human differences somewhat analogous to previous fields of Gender Studies or Race/Ethnic Studies. It was characterized by the participation of disabled persons themselves as researchers (Ferguson and Nusbaum 2012). As defined by the Society for Disability Studies, this branch of science seeks to augment understanding of disability, to promote greater awareness of the experiences of disabled people, and to advocate for social change (Society for Disability Studies 2013). Thus, it can be seen as a scientific counterpart to the political movement for the third service paradigm centred around human rights issues.
The aim of the present study is to give a broad overview on the development of social research on disability in Finland from the 1970s to the threshold of the present day in the context of the evolving welfare state. After summarizing the main actors for such studies, the analysis of the concept of disability is presented using a four-field inspired by the study of Harjula (1996). A second theoretical tool is to divide the development of disability services into three successive ideologies or paradigms, respectively stressing social control, rehabilitation, or human rights. On the basis of these distinctions, the research is reviewed in three temporal layers. The layers include early research, or the 1970s, the years 1980–2000, and the most recent research encompassing the years 2000–2010. Some specific topics treated concern the connection of the research on the development of the services, the possible role of research as a goad to political chance, and the volume and distribution of the research across the disability categories. Examples of representative studies are offered across various time periods and orientations.
The studies reviewed were selected from a computer search of several electronic databases including ISI Web of Knowledge, ERIC, PsycINFO, Sociological Abstracts, and Social Services Abstracts. Some purely Finnish databases were also used, such as JYKDOK and ARTO. ‘Finland’ and ‘disability’ or their Finnish language counterparts were used as keywords along with the names of the best-known disability researches. The computer search was supplemented by a manual search of bibliographies and publication lists of some Finnish disability organizations, public agencies and university departments active in the field. Some leading professional journals were searched manually. A message was sent to the VAMNET email list of the Finnish disability researchers to identify additional research. As the author has been active in the Finnish disability research since the early 1980s, he was able to identify some publications on the basis of his professional biography.
Nevertheless, the overview remains partial by necessity, as no all-inclusive databases were available. Despite this, the article aims to present the main lines of development in the field, and attempts to mention by name those researchers who have been most active.
The first observation found on the development of social research on disability is the growth of its volume during the studied decades. While the 1980s indicated a clear increase in the number of publications, the development during the 1990s and especially the following decade was striking. For example, the keywords ‘Finland’ and ‘disability’ gave only occasional references before the 1990s. After this the hits increased substantially, and the first decade of the twenty-first century gave three times more hits than the previous decade. The most important reason for this growth seemingly lies in the enlarged funding. The doctoral school system in the universities in particular began to produce increasing numbers of doctoral dissertations since the 1990s.
During the studied period there were no scholarly posts in universities nominated specifically for disability studies. The main resource for social disability studies were the departments of special education. They were established, when the training of teachers had shifted from colleges into universities during the1970s. The universities were allowed to found master's programmes for special education teachers and create departments of their own. Consequently, the discipline became well staffed. At the end of the time period under study, in 2010, there were ten professorships in special education. Additionally, there were numerous academic faculty staff positions, such as lecturers and assistants.
The social aspects of disability, to be sure, compose only one part of the field of special education. However, the special educators have been especially interested in social issues. As a consequence, they have occupied an important role in the whole field of social research on disabilities. A manual search of two European journals, Scandinavian Journal of Disability Research, and Disability & Society proves this. Thirteen articles with a Finnish first author have appeared in the 35 published volumes of theses journals during the study period. Of these authors all, except one, represent the faculty of special education departments.
In addition to special education, social research on disability has been practiced in other academic fields, especially medicine, psychology, history, sociology, sport, law, and social and public policy. Most researchers have been short-time visitors in the field. For a few, the field of disability has become the site of academic specialization.
Besides at universities, disability research has been carried out in various non-governmental disability organizations. During the years several disability organizations have started their own research departments or activities. The most prominent disability organization, The Finnish Association of People with Physical Disabilities, established in 1938, has not been active with social research. In contrast, the Finnish Welfare Association for the Mentally Deficient, called later the Finnish Association on Mental Retardation (FAMR) and now the Finnish Association on Intellectual and Developmental Disabilities (FAIDD), established a research unit in 1979 and has continued to be active in research.
The third source for disability studies has been the authorities. During the period under examination the most important state authorities responsible for research in this field were the central agencies working under the Finnish Ministry of Social Affairs and Health. These agencies included the National Board of Social Welfare (1968–1991), and after its abolition, the National Research and Development Centre for Welfare and Health, also known as Stakes (1992–2009). From 2009 onwards Stakes was reorganized as the National Institute for Health and Welfare. Currently, it employs approximately one hundred persons in its research staff, including 13 research professors. Nevertheless, social research on disability has remained a marginal area of interest in the research activity of these agencies, and the domination of medical research seems to be on the increase.
Other public organizations that have done disability research include the Rehabilitation Foundation which publishes the journal Kuntoutus (Rehabilitation). Several local service organizations such as special schools or federations of municipalities have also been active in publishing and conducting disability research. A few scientific associations are dedicated to disability issues. The Association on the History of Disability was established in 1989, and the Finnish Society for Disability Research was grounded in 2006 having now assimilated the tasks of the previous association. Both of them have organized conferences around their area of interest.
Before considering the topics of the disability studies done, it is necessary to examine the concept of disability itself. For many purposes the concept is too extensive. A traditional way to approach this concept has been to divide it into subgroups on the basis of the seriousness of disability. For example, the Finnish Committee of the International Year of Disability 1981 made this kind of distinction. According to the Committee the prevalence of mild disability was about 10%, moderate disability 5% and severe disability less than 1% of the total population (Komiteanmietintö 1982, 38).
A different way to conceptualize the subcategories of disabilities is to concentrate on the cultural meaning attached to various subgroups (Harjula 1996). Inside the overall concept of disability there are different types of disabilities which bear distinct cultural meanings. In Table 1 the concept of disability is divided into four layers, while two lines of division are applied. The first division makes a difference between the disability of mind and the disability of body. The latter stigmatizes the person. Still, in social perception, the person continues to be seen as an essentially human being, because it is easy to attribute his or her difference to outer bodily damage. The person behind the damage is still discernible (Harjula 1996). In contrast, the disability of mind touches the identity of the human being more deeply. The odd behaviour of a person with a disability of mind awakens suspicions of his or her real humanity. Accordingly, their status as full human beings is easily questioned. This leads to the application of different social norms in their treatment and care (Harjula 1996).
|Origins of disability|
|Ground of disability||Acquired||Congenital|
|Body||1 Physical disability through accidents or disease: ‘invalidity’||2 Deaf, blind, cerebral palsy, epilepsy, physical disability, ‘crippled’ etc.|
|Mind||3 ‘Madness’, Mental disorder||4 ‘Mental retardation’, Intellectual disability|
The second division inside the concept of disability concerns the origin of the disabling condition. The origin may be considered more honourable when an able bodied person is impaired at war, through an accident at work, or through a disease (Harjula 1996). In these cases, there is no question of the social acceptability of the person itself. However, if the impairment is inborn, the humanity of the person is again in greater danger, because it remains more unclear whether we can make a distinction between the person herself and her disability.
There is natural overlap between the challenges met by each category. However, the differences between the categories may be more important than their similarities. This makes the use of the general category of disability somewhat misleading. The four disability groups do not necessarily have any major common interests. Rather, the groups compete with each other for social benefits. People with more honourable origin of disability typically have strived not to be confounded with the disability groups that have a lower status than their own. The examples given in Table 1 shed additional light on these four types.
The social stigma attached to disability increases from group to group according to its number in Table 1. This can be seen in the development of disability services in Finland. The division between the disabilities of mind and body has divided the lines of development into two. Disability legislation in the first half of the twentieth century awarded benefits only to people with physical disabilities (e.g. Act on Invalidism 1946) while others were served under the general poor relief legislation. People belonging to the group of ‘disability of body since birth’ struggled to be included in the more privileged group of ‘invalids’. During the 1950s separate legislation was enacted for people with mental disabilities: the Act on Mental Illness in 1952 and the Act on Mental Deficiency in 1958. The benefits based on this legislation concentrated on institutional care. The removal of children with intellectual disabilities from their parental homes to institutions was especially encouraged. The primary nature of this legislation prevented people with disabilities of mind from enjoying other, more extensive benefits guaranteed through other legislation. One of these benefits was the right for schooling. Thus, the formal hierarchy between the acts served as a sophisticated tool for legal discrimination.
The focus group that has most interested the disability researchers in the social research area has been the people with intellectual disabilities (cell 4 in Table 1). This is not accidental. First, a large quantity of people, more than half a percent or 30,000 persons of the Finnish population, has continually received services based on this diagnosis. Second, the field of these services has been multifaceted because of the nature of intellectual disability. The services have included the multidisciplinary fields of daily care, schooling and education, employment and housing, often with a need for very intensive provisions. In contrast to this, social research concerning mental disorders (cell 3) has awakened less interest. This group consists mostly of adult population, whose problems have been mainly treated through social control mechanisms, such as institutional care and medication. The relative size of this group is at least one per cent of the population, counting the severe cases only.
People with inborn physical disabilities (cell 2) have received much attention relative to the small size of this population. Strong group identity and long tradition of self-advocacy have increased their visibility. Disability researchers who themselves have disabilities come from this layer. The last category, people with acquired physical disabilities (cell 1), are a sizeable but heterogeneous constellation. Among people in this category, the identification of their disability competes with many other personal identities.
The gradual development of the Finnish welfare state forms a background for the evolving disability services. Table 2 summarizes a theoretical model that connects the development of disability services to the political and economic progress of Finnish post-war society (Saloviita 2005). This figure is inspired by the analyses of Conrad and Schneider (1980/1992), Bradley and Knoll (1990), and Smull and Bellamy (1991), but related or analogous typologies have been presented elsewhere, as well. The model reflects some changes that probably are common to most or all developed countries in the whole world.
|Parameters||Institutional model||Rehabilitation model||Support model|
|Service model||Institution||Continuum of services||Individual supports|
|Political and economical background||Shift from agricultural to industrial society (ca. 1945–)||Shift from industrial to post-industrial society (ca. 1965–)||Political change inside post- industrial society (ca. 1985–)|
|International influences||Models from other countries||United Nations post-war programmes||United Nations programmes|
|Metaphor of disability||Criminal||Sick||Citizen|
|Central dimension of disability||Impairment||Disability, activities||Handicap, participation|
|Challenge for services||Social control||Rehabilitation||Human rights|
|Access to normal community||No return||Conditional return through rehabilitation||Participation without preconditions|
|Legislation||Act on Mental illness 1952; Act on Mental Deficiency 1958||Act on Invalidism 1946; Act on Developmental Disabilities 1977||Act on Disability Services 1987; Amendment 2008|
The succession through these phases, naturally, has its unique features in each country. One specialty of Finland has been its late industrialization (ca. 1945–) and the short duration of the period of industrial society before moving to the post-industrial phase of development (ca. 1965–). Because of this exceptionally short intervening time interval the postmodern Finnish society remained in a unique way under the mental influence of many pre-modern features that characterize traditional societies. An important element was the influence of a pre-modern value system that was relatively intolerant towards social deviancy. This had its effects on the development of disability services in Finland that was characterized by its late transformation from an institutional model to a rehabilitation model and further to a support model. The modernization of disability services lagged behind other Nordic countries. One example of this is the slowness in the dismantling of traditional large mental disability institutions, which still was on its way at the end of the study period.
The development of services for people with physical disabilities began to shift to a rehabilitation model during the first half of the twentieth century (the Act on Invalidism 1946). The ILO recommendation on vocational rehabilitation (ILO 1955) was an international hallmark of this new direction. A large amount of disabled veterans returning from World War II provided the background for this change.
Nevertheless, the services for people with mental disabilities continued to be based on institutional care. This situation continued until the end of the 1960s. By that time the rehabilitation model very strongly began to influence the development of new type of services for this group, as well (Saloviita 2005). The change was inspired by the breakthrough of the post-industrial society associated with profound changes in the economic structure of the country and accelerated development of social services. During this short intersectional period, the political left occupied thus far the last time a majority position in the parliament.
The next paradigmatic shift, the transition to the support model, began in the 1980s. It concerned first, the people with physical disabilities (the Act on Disability Services 1987), but was cautiously and step by step extended to people with mental disabilities, as well. One step, for example, was the renewal of special education legislation (Act on Basic Education 1998). In this reform, individual education plans replaced the old categorical special class curriculums creating a more flexible and individualized way to provide services.
Since the 1980s the development of new services has followed the doctrines of both the rehabilitation and support models. Still, the application of the support model has remained marginal, especially for people with mental disabilities. At the edge of the new decennium of 2010, however, new changes expected to give further dynamism to the paradigm shift are foreseen.
The late beginning and rapid development of the modernization of the Finnish society caused some peculiar consequences to the building of disability services. When the construction of the institutions for people with ‘disabilities of mind’ finally began during the 1960s, the society had already moved away from the industrial phase to a post-industrial stage. This meant that the real needs of the society had already moved away from the institutional model of service provision. However, it was impossible to stop a train that had attained its full speed. Therefore, institutions were actually built for the needs of a past society. The construction of institutions continued until the year 1979. At that time, the last site, the building of Killinmäki Central Institution, was interrupted leaving behind an air of an unfinished dinosaur with too large a head and a few massive body parts consisting of some oversized ward buildings.
The symbolical change at the level of language use from the old paradigms to a new support paradigm typically occurred before the new services themselves had appeared. For example, at the turn of the new millennium the old central institutions were renamed as ‘service homes’ and the traditional sheltered workshops as ‘job coaching centres’. It is natural that these kinds of rhetorical changes happen earlier than the true changes. Even if they can be interpreted as attempts to resist the real and concrete conversion, they are, nevertheless, expressions of the ideals beginning to catch the minds of people.
In the early 1970s there was not yet much activity in the field of social research on disability. This was in sharp contrast with well-funded medical research of that time. The requirements of medical research were even taken into account in the very construction of the institutions for people with intellectual disabilities. In a somewhat macabre way, autopsy rooms were built next to the housing units to serve brain science.
Research activity on disability issues during the 1970s is well documented in a detailed review by Ojamo (1982) published as an appendix to the Committee Report of the International Year of Disability 1981. This review listed over one hundred academic studies, including 28 dissertations, almost all of them medical. The most popular objects of the study were people with intellectual disabilities and, secondly, people with acquired physical disabilities. The third group was people with congenital physical disabilities, while only a few studies were made on the fourth group, that is, people with mental disorders. The main areas of interest were the meaning and effects of disability in the life of the persons. The second area of interest was the economic costs of the services. The most active research agents at that time were the institutes of health sciences in the medical faculties of various universities, and also the departments of special education and social and public policy. The research activity of disability organizations remained minimal (Ojamo 1982).
An example of an early category 4 study (Table 1) in the 1970s is the task force study funded by the National Board of Social Welfare concerning the organization of care for people with intellectual disabilities (Paukkunen et al. 1971). The memorandum was published when a major shift from the institutional paradigm to the rehabilitation model was occurring for people with a ‘disability of mind’. Accordingly, the memorandum suggested that ‘human aspects’ should also be taken into account ‘in a reasonable way’ (sic) alongside with economic considerations when services for people with intellectual disabilities were planned. The fresh ideas about group homes, sheltered workshops and school-based education were presented.
Despite the winds of change there seemed to be no real interest in the quality of life issues yet. For example, a study on Down syndrome people (Kääriäinen 1975) contained a sample both from institutions and parental homes. However, these two groups were not compared with each other in order to find possible effects of the type of housing.
In contrast to the quality of life issues, the question of employability was considered essential. An important comparative study of adaptive behaviour of people with intellectual disability showed the great influence of schooling to the further transition to working life among people with intellectual disability or borderline condition (Ruoppila 1972). At that time, a large number of students with a lower than medium intellectual capacity, were still excluded from the schools on the basis of teachers' decisions. The unsoundness of this practice was shown, a finding that matched with the policy change occurring. Some examples of research papers in categories 1 and 2 provide the studies on the families of long-time sick children (Urponen and Urponen 1979), and the dissertation on the societal integration of visually impaired people (Kuotola 1976).
The shift to a new rehabilitation paradigm at the end of the sixties began to stimulate more research in the area of disability. Also, the growth of the universities during the late sixties had their effects. The fresh contents of the new service paradigm provided the ideological starting points for research: ‘a new conception of human rights’, ‘rehabilitation’, ‘integration’ and ‘a continuum of services’ instead of just institutional care (Komiteanmietintö 1966). In the same year, 1979, as the construction of the last large mental institution was discontinued, a research unit was established in the National Welfare Association for the Mentally Deficient (later FAMR) based on the promising sentence in the brand new Act On Mental Developmental Disabilities (1977) that promised financial support for research. This small research unit published mainly in its own series a large number of Finnish language research papers by its own and outside researchers. The unit was modelled after a similar unit in Sweden and it has continued to have close contacts to researchers in other Nordic countries.
A second period to be studied includes the decenniums 1980 and 1990. A bibliography ‘on the welfare for the mentally handicapped’ (Jokinen 1989) lists 1500 articles on this topic between the years 1981 and 1986. One of the most popular keywords was ‘integration’, which demonstrates observance to a new service model. At the beginning of 1980s the places in institutions began to slowly diminish. New services, such as group homes or sheltered workshops were being established. However, integration did not mean ‘full participation and equality’ which was the slogan of the International Year of Disabled Persons (United Nations 1981). Instead, it meant the construction of a modern continuum of services. A good overview of the mental state of the field was provided by a well-known book, The Disabled – a Large Minority (Määttä 1981). The book stressed the importance of a ‘new conception of humanity’. This expression demonstrates the conscious intellectual break from the old model. At the same time the book was blind to many defaults of the growing new disability industry that was based on the continuation of the professional domination. Actually, the book helped to make the crisis theory of Johan Cullberg popular among professionals (Cullberg et al. 1973). This theory was misused to give professional opinions precedence over the parental opinions. It happened by explaining parental opinions pathological and irrational on the basis of the supposed prolonged, and actually never-ending, ‘crisis’ caused by the birth of a child with disabilities.
The research unit of the National Welfare Association for the Mentally Deficient (later FAMR) published over 50 studies on intellectual disabilities during the 1980s and was probably the major publisher of studies on disability. The main areas of interest were housing, schooling and employment issues. The majority of studies were done by psychologists or special education professionals and, accordingly, related to educational and psychological themes. A notable gap that was observable still during the 1980s was the absence of family studies. Research on families did not really begin before the 1990s (Hautamäki 1993; Itälinna, Leinonen, and Saloviita 1994; Määttä 1999; Mäki 1998; Mattus 2001).
The eminent position of the newly built institutions for people with intellectual disabilities was reflected in research during the 1980s and 1990s. After the year 2000, the institutions had already shrunk in size and they awakened much less interest. The research on institutions was mainly undertaken by people who were working in the institutions and were economically dependent on them. Because of this dependency, the studies typically assumed the inherent rationality of institutional care. For example, the medical officers of the Paimio central institution made a follow-up study on the rehabilitation of inmates of the institution (Turunen and Mölsä 1984). The results were interpreted in favour of institutional care. When the writers noted the increased use of neuroleptic medication it was easily explained away: ‘In institutional environment there presumably are some goads that produce restlessness. Accordingly, it is reasonable to find these causes and remove them if possible’. Some other examples of research on institutions include studies on the closing of an institution (Saloviita 1992), development of the care inside an institution (Heikkilä 1995), study on mental hospitals as sites for people with intellectual disabilities (Ladonlahti 2004), reforms in mental hospitals (Salo 1996) and service delivery systems for people with intellectual disabilities (Nouko-Juvonen 2000).
A large research project on intellectual disability was done in the University of Kuopio beginning from 1977 and funded by the Academy of Finland. The project was mainly medical, but contained some social aspects. One study demonstrated the connection between the socioeconomic status of the family and institutional placement of the child: the farmer families sent their children to an institution more rarely than other families (Piepponen 1982). This finding supports the assumed connection between industrialisation and institutional care. Another similar project in the University of Oulu, based originally on the Northern Finland 1966 birth cohort, has produced ample knowledge on the life conditions of disabled people (e.g. Taanila et al. 2005).
Only few studies were critical to institutions, for example, noting the inadequately regulated use of force (Keränen 1988) or extremely poor quality of care (Saloviita 1989). The latter study caused a nationwide media scandal, when the research director of the FAMR tried to eliminate the negative findings from the report. However, the media publicity did not lead to consequences against institutions, contrary to similar events in the USA after the publication of the book Christmas in Purgatory (Blatt and Kaplan 1974), or in Norway during 1980s after the presentation of a candid video on the abuse in an institution. As an anecdote, the event reveals the deep structure of the Finnish society as a formation built from top down, in which changes are stimulated more through state bureaucracy than by civic movements (see Konttinen 1991).
At the early 1990s the concept of quality of life attained exceptional popularity. A large ‘quality of life’ research project was accomplished by FAMR during the decade. A thrilling innovation, proposed by the consulting US professor David Goode, was the discussion groups for people with intellectual disabilities. These groups preceded the self-advocacy organizations of people with intellectual disabilities established soon after this: in 1996, for the Swedish speaking parts of the country, and 1999, for the Finnish speaking part. The quality of life theme was followed by a shift of interest towards measuring the quality of care. However, these opening moves of FAMR towards larger sociological themes remained only temporary when FAMR turned into neuropsychological research for the coming years. It returned again to social issues in the first decade of the twenty-first century when, among other things, inclusive education was raised as an area of interest, demonstrating concurrently the important shift of focus from the traditional rehabilitation paradigm to a new support paradigm.
During the 1990s, the quality of life issues were popular among other groups of disabilities as well. A frequent conclusion of these studies was the notion that impairment per se did not decrease the disabled individual's quality of life – a conclusion stressed by the social model of disability (Viemerö and Krause 1998).
The credibility of institutional care remained unchallenged until the turn of the new millennium. The belief in the rationality of institutional care was reflected in the language, as well. The professionals did not speak about dismantling the institutions but about decentralization – that is, preserving institutions by just moving them to multiple places. Actually, institutions began to shrink considerably in size during the 1990s. This was not due to the lack of their credibility but to a change in the state subsidy legislation, which urged local municipalities to transfer their inhabitants to local services. This was typical to the Finnish development. As indicated earlier, the incentives for change have not come from below but from above, and they have typically assumed the form of the state subsidy legislation. By the year 2000, the number of places in institutions had finally decreased beneath those modest recommendations made by the early committee that strived for their reduction (Kehitysvammaliitto 1981). At the turn of the century parental organizations, at last, turned critical towards institutions, or what was left of them. Critical research on institutional care now became permissible for the researchers, as well (Teittinen 2010). Some recent studies have followed the deinstitutionalization processes (Kuparinen 2005; Toivanen and Syrjälä 1997).
An important branch of social research on disabilities at the end of the century was the research made from the perspective of social history. Some examples of excellent studies belonging to this category are the studies on the development of special education (e.g. Kivirauma 1989), early special schools (Vuolle 1993), early interpretations on disability (Harjula 1996), eugenics in Finland (Mattila 1999; Meskus 2009), early history of mental retardation in Finland (Malinen 1992), and the study on marginal groups in the past (Nygård 1998).
In the field of special education, social studies on disability were mainly concerned with the issues of school integration (Heikinaro-Johansson 1995; Ihatsu 1995), and especially the attitudes of teachers towards integrating students with disabilities (Moberg et al. 1980). These attitudes were typically more negative than positive (Moberg 1984). Another important strand has been the follow-up studies of former special education students (Haapasalo, Nevalainen, and Roine 1996; Koro and Moberg 1981; Niemi, Mietola, and Helakorpi 2010; Jahnukainen 1997).
In the new millennium, the Finnish disability research has shown new developments which have reflected its changing environments. Most importantly, the slowly strengthening new service paradigm, or support paradigm, has influenced the contents or at least the language of the studies. However, in contrast to the previous shift from the institutional model to a rehabilitation model during the late 1960s, the new shift has not awakened similar reflective observations of a definitive break from the past. Evidently, the persons involved in the field have not generally seen the paradigm shift as a radical dismantling of the old rehabilitation metaphor, but merely as a shift in the use of language. New words of the support paradigm, borrowed from international sources, have been adopted, but they are mainly defined to mean the same as the previous words. For example, services are newly baptized as ‘supports’. The concept of inclusion is now widely used, but it may be understood to mean hardly more than the traditional continuum of services. In a similar way ‘supported employment’ has come to mean hardly more than traditional sheltered work, and in the field of special education the essentialist concept of ‘special educational needs’ prevails instead of a more sociological understanding. One reason for this lack of consciousness of the paradigm shift obviously is the slow development of the truly new types of disability services pictured in Table 2. For instance, the placements of adults with intellectual disabilities in supported employment have never run over one hundred, which was the level achieved immediately in the mid-nineties after these programmes, inspired by the funding from EU, were started (Pirttimaa 2003).
During the first decennium of the new millennium, some research clearly anchored to the new paradigm has begun to emerge. Examples of these are studies on supported employment (Pirttimaa 2003) or inclusive education (Naukkarinen 1999; Teittinen 2003). However, studies that would provide a critical look at the disability services still remain few in number (e.g. Ollikainen 2008). It seems that in terms of Habermas' well-known knowledge interests (Habermas 1968/1976) the technical interest has dominated, while the practical and especially emancipatory interests are still mainly waiting their turn. In this regard one positive sign is the activation of people with disabilities (Table 1, category 2) as researchers (Loijas 1994). Their topics have included sociological (Teittinen 2000), juridical (Kumpuvuori 2006), feminist (Reinikainen 2007) and conceptual studies (Murto, Kivirauma, and Siljander 2007). These references are examples of the Finnish ‘Disability Studies’.
Another development begun forcefully during the early 1990s is the emergence of qualitative research. This new approach has especially favoured approaches called ethnographic or phenomenological. In them, small samples of participants have been interviewed about the interpretations they give on selected issues. Some other studies have applied discourse analysis (Vehkakoski 2000; Vehkakoski 2006), text analysis (Tiililä 2007) feminism (Reinikainen 2007; Väätäinen 2003) and grounded theory (Siponen 1999).
Connecting to the general increase of the total volume of social disability research a new trend of edited books on disability issues has emerged (Kivirauma 2008; Nouko-Juvonen 1999; Teittinen 2006; Teittinen 2010). In addition, some new fields have emerged such as philosophical studies on disability connecting mostly to bioethical issues (Häyry 2007; Vehmas 2002). An important new feature is international publication. During the 1970s and 1980s the publication of studies happened mainly in domestic languages. During the last decade international publication has taken the precedence to the extent that in some cases the traditional department publication series have withered away.
Even if intellectual disability has remained the main area of interest among social studies, there continues to be vivid research activity in other categories, as well, such as visual impairment (Ojamo 1996; Ekholm 2009), hearing impairment (Lehtomäki 2005), aphasia (Aaltonen 2002), or asthma (Siponen 1999).
A summary of more than one hundred studies on the social situation of people with disabilities was provided by Haarni (2006). The review was published as background material for the first national report on disability policy published by the Ministry of Social Affairs and Health in the same year. The rhetoric of the review was penetrated by the language of the support paradigm: the main problem was no longer the rehabilitation of disabled people back to the workforce, but their equality as citizens. In this respect the review found shortages associated, among others, to negative attitudes towards people with disabilities (Haarni 2006).
Social research on disability has grown to a voluminous field of research in Finland. It is being carried out in several disciplines, especially the academic field of special education. Few researchers have remained in the field for a longer period of time. In fact, a significant part of the publications have been solitary papers based on academic dissertations. The qualitative turn in educational and social sciences during the 1990s has changed the methods. More often than before, the studies have relied on a limited number of participants, and avoided the use of statistics. Nevertheless, the change in research topic is less radical. While modern studies have readily investigated the meanings and interpretations of the subjects, the studies of the 1970s gave an equal emphasis to the study of the meanings of the participants (Ojamo 1982).
The development of scientific databases and computer technology has made the international influences to Finnish research more rapid, direct and pervasive. At the same time the Finnish disability research has turned more international. While the research methods applied are commonly shared international property, the similarities in research topics across countries also indicate parallels in the development of disability services in these countries.
Even if the volume of research has grown, it would be daring to say that the influence of research on the development of disability services has increased. Broadly speaking the opposite seems to be true: policy changes shape the orientation of research. At the end of the 1960s the great political turn from the institutional model to the rehabilitation model was not preceded but followed by rehabilitation – oriented research. The same holds true in the presence of the new transformation in paradigm. The adoption of human rights rhetorics by the researchers has followed, but not preceded, similar changes in rhetorics by the state officials.
It is difficult to do social research on disabilities without entering the field of professional interests of the service providers. If the researchers want to become critics of the disability services they study, they easily endanger their own record when stepping on the toes of the parties involved. This may explain why researchers still during the 1990s mainly fell silent on issues concerning institutional care, inclusive education, or unpaid work done by people with disabilities. Now, along with the change in policy, all these issues are becoming legitimate or even trendy.
Aaltonen , T. 2002 . Sanatonko tarinaton? Afaatikon intersubjektiivinen maailma ja kertoen rakentuva identiteetti [Without Words Means Having Nothing to Say? Intersubjective World of an Aphatic] . [city: Helsinki] : Miina Sillanpään säätiö .
Bradley , V. J. , and J. Knoll . 1990 . Shifting Paradigms in Services to People with Disabilities. Unpublished Manuscript. Administration on Developmental Disabilities . [city: Washington], [state: DC] : United States Department of Health and Human Services .
Cullberg , J. , Y. Nuorvala , T. Summa , and I. Österberg . 1973 . Psyykkinen trauma: Kriisiteoriasta ja kriisipsykoterapiasta [Psychic Trauma: On Crisis Theory and Crisis Psychotherapy] . [city: Helsinki] : A-klinikkasäätiö .
Ekholm , E. 2009 . Monimuotoisuus ja esteettömyys: Näkövammaisten asiantuntijoiden työelämäkokemuksia [Diversity and Universal Design: Experiences of Visually Impaired Experts on Working Life] . [city: Espoo] : Ennora .
Ferguson , P.M. and E. Nusbaum , 2012 . “ Disability Studies: What is it and What Difference Does it Make? ” Research & Practice for Persons with Severe Disabilities 37 ( 2 ), 70 – 80 doi: https://doi.org/10.2511/027494812802573530 .
Haarni , I. 2006 . Keskeneräistä yhdenvertaisuutta: vammaisten henkilöiden hyvinvointi ja elinolot suomessa tutkimustiedon valossa [Unfinished Equality: Welfare and Living Conditions of Disabled People in Finland] . [city: Helsinki] : Stakes .
Habermas , J. 1968/1976 . Tieto ja intressi [Knowledge and Interest] . In Yhteiskuntatieteiden filosofiset perusteet [Philosophical Grounds of Social Sciences] , edited by R. Tuomela and I. Patoluoto , 118 – 141 . [city: Helsinki] : Gaudeamus .
Harjula , M. 1996 . Vaillinaisuudella vaivatut: Vammaisuuden tulkinnat suomalaisessa huoltokeskustelussa 1800-luvun lopulta 1930-luvun lopulle [Bothered by Incompleness. Interpretations of Disability in a Finnish Discussion from the End of Nineteenth Century to the End of the Decade 1930] . [city: Helsinki] : Suomen historiallinen seura .
Hautamäki , A. 1993 . Down-lapsi perhe-elämän kaaressa: Vammainen lapsi elämäntavan kipupisteenä, kiintotähtenä ja valopilkkuna [A Child With Down Syndrome in the Cycle Family Life] . [city: Helsinki] : Kehitysvammaliitto .
Heikkilä , L. 1995 . Kehitysvammahuollon pienyksiköiden kehittäminen ja kehitysvammaisten asukkaiden toiminnan muutos: Psykologinen tutkimus kehitysvammahuollon toimintayksiköiden kehittämisestä ja pienyhteisöjen muutosten yhteyksistä kehitysvammaisten toimintakykyyn [Advancement of Small Units in the Care for People with Intellectual Disabilities and the Change in the Behaviour of Inhabitants with Intellectual Disability] . [city: Tampere] : Tampereen yliopisto .
ILO . 1955 . Vocational rehabilitation (Disabled) Recommendation No. 99 . http://www.ilo.org/dyn/normlex/en/f?p =1000:55:0::NO::P55_TYPE,P55_LANG,P55_DOCUMENT,P55_NODE:REC,en,R099,%2FDocument
Itälinna , M. , E. Leinonen , and T. Saloviita . 1994 . Kultakutri karhujen talossa: Kehitysvammaisen lapsen perheen voimavarat ja selviytyminen [Goldilocks in the House of bears: Resources and Coping of the Families with an Intellectually Disabled Child] . [city: Tampere] : Kehitysvammaisten tukiliitto .
Jahnukainen , M. 1997 . Koulun varjosta aikuisuuteen: Entisten tarkkailuoppilaiden peruskoulun jälkeiset elämänvaiheet [From the Shadow of the School to Adulthood] . [city: Helsinki] : Helsingin yliopiston opettajankoulutuslaitos .
Kääriäinen , R. 1975 . Physical, intellectual, and personal characteristics of Down's syndrome . Jyväskylä studies in education, psychology and social research 31 . [city: Jyväskylä] : University of Jyväskylä .
Kehitysvammaliitto . 1981 . Laitoshuollon tehtävä ja asema kehitysvammahuollossa [The Task and Position of the Institutional Care in the Services for Developmentally Disabled] . [city: Helsinki] : Kehitysvammaliitto .
Keränen , V. 1988 . Kehitysvammahuollon pakkokeinonormisto ja perusoikeudet [Restraint Norms in the Care of People with Intellectual Disabilities and the Basic Rights] . [city: Helsinki] : Kehitysvammaliitto .
Kivirauma , J. 1989 . Erityisopetus ja suomalainen oppivelvollisuuskoulu vuosina 1921–1985 [Special Education and the Finnish Compulsory Education School During the years 1921–1985]. Turun Yliopiston julkaisuja, C . 74 . [city: Turku] : Turun Yliopisto .
Komiteanmietintö . 1982 . Kansainvälisen vammaisten vuoden 1981 Suomen komitean mietintö [Report of the Finnish Committee of the International Year of Disability 1981] . Komitanmietintö. 1982:35. Helsinki .
Koro , J. , and S. Moberg . 1981 . Tarkkailuoppilaiden sijoittuminen yhteiskuntaan [Settling down of the Observation Class Students into Community]. Tutkimusselosteita 36 . [city: Helsinki] : Kouluhallitus .
Kumpuvuori , J. 2006 . Perusoikeuksien rajoittamisesta kehitysvammapalvelujen toteuttamisessa [Limitations of Basic Rights in the Services for People with Intellectual Disabilities] . [city: Helsinki] : Sosiaali- ja terveysministeriö .
Kuparinen , R. 2005 . “Ei meidän naapuriin”: Tapaustutkimus asukasyhteisön suhtautumisesta kehitysvammaisten asuntolan rakentamiseen [“Not in My Backyard”: Case Study on the Attitudes of Neighborhood on the Group Home for People with Intellectual Disabilities] . [city: Helsinki] : Kehitysvammaliiton tutkimusyksikkö Kotu .
Ladonlahti , T. 2004 . Haasteita palvelujärjestelmälle kehitysvammaiseksi luokiteltu henkilö psykiatrisessa sairaalassa [Challenges to the Services: Persons with Intellectual Disabilities in Mental Hospitals] . [city: Jyväskylä] : Jyväskylän yliopisto .
Lehtomäki , E. 2005 . Pois oppimisyhteiskunnan marginaalista? koulutuksen merkitys vuosina 1960–1990 opiskelleiden lapsuudestaan kuurojen ja huonokuuloisten aikuisten elämänkulussa [Out of the Marginal of the Learning Society?] . [city: Jyväskylä] : Jyväskylän yliopisto .
Malinen , S. 1992 . Nuo syyttään kurjat ja puuttuvaiset: Kehitysvammaisten identifiointi ja huollon muotoutuminen Suomessa 1877–1927 [Those Miserables and Poor: Identification of Feeble Minded and the Formation of Services in Finland 1877–1927] . [city: Helsinki] : Kehitysvammaliitto .
Mattila , M. 1999 . Kansamme parhaaksi: Rotuhygienia Suomessa vuoden 1935 sterilointilakiin asti [For the Benefit of Our Nation: Race Hygiene in Finland Until the Sterilization Act in 1935] . [city: Helsinki] : Suomen historiallinen seura .
Mattus , M. 2001 . Valtaistava ja yhteistyötä avaava haastattelumenetelmä perhelähtöisessä interventiossa [Empowering and Cooperative Inquiry in Family-centered Intervention] . [city: Rovaniemi] : Lapin yliopisto .
Meskus , M. 2009 . Elämän tiede: Tutkimus lääketieteellisestä teknologiasta, vanhemmuudesta ja perimän hallinnasta [Science of Life: Research on the Medical Technology, Parenthood, and the Control of Genotype] . [city: Tampere] : Vastapaino .
Moberg , S. 1984 . Poikkeavia oppilaitako normaaliluokille?: Peruskoulun ja lukion opettajien suhtautuminen poikkeavien oppilaiden sijoittamiseen yleisiin opetusryhmiin [Deviant Students to Mainstream Classes?] . [city: Jyväskylä] : Jyväskylän yliopisto .
Moberg , S. , O. Ikonen , A. Miettinen , and M. Nätti , 1980 . Integraatio kehitysvammahuollossa: Käsiteanalyysi ja teoreettinen tausta [Integration in the Services of People with Developmental Disabilities] . [city: Helsinki] : Kehitysvammaliitto .
Murto , P. , J. Kivirauma , and P. Siljander . 2007 . Uskallanko puhua?: Kasvatuksellisella kuntoutuksella itsenäiseen toimintaan [Shall I Dare to Speak: Through Rehabilitation Towards Independence] . [city: Oulu] : Kasvatustieteiden tiedekunta, Oulun yliopisto .
Mäki , O. A. 1998 . Toivoisin eläväni päivän kauemmin kuin lapseni: Ikääntyneet vanhemmat ja kotona asuva kehitysvammainen lapsi [I Wish I Could Live One Day More than My Child] . [city: Tampere] : Tampereen yliopisto .
Naukkarinen , A. 1999 . Tasapainoilua kurinalaisuuden ja tarkoituksenmukaisuuden välillä: Oppilaiden ei-toivottuun käyttäytymiseen liittyvän ongelmanratkaisun kehittäminen yhden peruskoulun yläasteen tarkastelun pohjalta [Balancing Between Discipline and Convenience] . [city: Jyväskylä] : Jyväskylän yliopisto .
Nygård , T. 1998 . Erilaisten historia. Marginaaliryhmät Suomessa 1800-luvulla ja 1900-luvun alussa [The History of Different People. Marginal Groups in Finland in the Nineteenth Century and in the Beginnng of Twentieth Century] . [city: Jyväskylä] : Atena Kustannus Oy .
Ojamo , M. 1996 . Rekisteröityjen näkövammaisten sosiaalinen asema [The Social Status of Registered Visually Impaired Persons] . [city: Helsinki] : Sosiaali- ja terveysalan tutkimus- ja kehittämiskeskus .
Ollikainen , A.-M. 2008 . Marginaalin marginaalissa? Vammaiset ja osatyökykyiset henkilöt työllistymispalveluiden reunoilla [In the Marginal of the Marginal? People with Disabilities in the Margins of Employment Services] . [city: Helsinki] : Vates-säätiö .
Paukkunen , L. , I. Ruoppila , O. Hietala , and M. Korkiakangas . 1971 . Sosiaalihallituksen asettaman vajaamielislaitossuunnitelmien tarkistamista ja avohuollon vaikutuksia tutkineen työryhmän muistio (mental retardation in Finland 1971) [Memorandum of the Committee on the Care of Mentally Retarded] . [city: Jyväskylä] : Jyväskylän yliopisto. Erityispedagogiikan laitos .
Piepponen , P. 1982 . “ Älyllisen kehityshäiriön sosiaalinen tausta [Social Background of the Intellectual Disability] .” In Älyllisen kehityshäiriön yleisyys, syyt ja seuraukset varhaisessa kouluiässä. Peruskartoituksen alustavat tulokset Kuopion läänissä [Prevalence, Causes and Consequences of Intellectual Disability] , edited by O. P. Heinonen , 58 – 78 . [city: Kuopio] : Kuopion korkeakoulu .
Reinikainen , M. 2007 . Vammaisuuden sukupuolittuneet ja sortavat diskurssit yhteiskunnallis-diskursiivinen näkökulma vammaisuuteen [Sexualized and Oppressing Discourses of Disbility] . [city: Jyväskylä] : Jyväskylän yliopisto .
Ruoppila , I. 1972 . Lievästi vajaamielisten ja vajaamielisiksi epäiltyjen aikuisten adaptiivinen käyttäytyminen: Vuoden 1962 vajaamielistutkimuksen jatkotutkimus [Adaptive Behaviour of Mildly Mentally Retarded People] . [city: Jyväskylä] : Jyväskylän yliopisto .
Salo , M. 1996 . Sietämisestä solidaarisuuteen: Mielisairaalareformit Italiassa ja Suomessa [From Tolerance to Solidarity: Mental Hospital Reforms in Italy and Finland] . [city: Tampere] : Vastapaino .
Saloviita , T. 1989 . “ Elämää keskuslaitoksessa. Tutkimus poikkeavien henkilöiden elämänlaadusta [Life in the Institution] .” In Keskuslaitoksesta ryhmäasuntoon. Tutkimuksia kehitysvammaisten asumisesta, hoidosta ja opetuksesta [From Institution to a Group Home] . Valtakunnallisen tutkimus- ja kokeiluyksikön julkaisuja 52, edited by T. Saloviita, 13 – 40 . [city: Helsinki] : Kehitysvammaliitto .
Saloviita , T. 1992 . Takaisin yhteiskuntaan: Tutkimus kehitysvammaisten laitoshuollon purkamisesta [Back to Community: A Study of the Dismantling of an Institution] . [city: Tampere] : Kehitysvammaisten tukiliitto .
Saloviita , T. 2005 . “ Paradigms of Disability Services in Finland .” In Resistance, reflection and change , A. Gustavsson , J. Sandvin , and R. Traustadóttir , 47 – 57 . [city: Lund] : Studentlitteratur .
Smull , M. W. , and G. T. Bellamy . 1991 . “ Community Services for Adults with Disabilities. Policy Challenges in the Emerging Support Paradigm .” In Critical Issues in the Lives of People with Severe Disabilities , L. H. Meyer , C. A. Peck and L. Brown , 527 – 536 . [city: Baltimore] : Paul H. Brookes .
Society for Disability Studies . 2013 . Home . http://www.disstudies.org .
Taanila , A. , P. Rantakallio , M. Koiranen , L. Von Wendt , and M.-R. Jarvelin . 2005 . “ How do persons with Intellectual Disability Manage in the Open Labour Markets? A Follow-up of the Northern Finland 1966 Birth Cohort .” Journal of Intellectual Disability Research 49 ( 3 ), 218 – 227 doi: https://doi.org/10.1111/j.1365-2788.2005.00648.x .
Tiililä , U. 2007 . Tekstit viraston työssä: Tutkimus etuuspäätösten kielestä ja konteksteista [Texts in the Work of Bureau: A Study on the Language and Context of Benefit Decisions] . [city: Helsinki] : Suomalaisen Kirjallisuuden Seura .
Toivanen , S. , and S. Syrjälä . 1997 . Laitoksesta lähiyhteisöön: Kehitysvammahuollon palvelurakenteen seurantatutkimus [From Institution to Community: A Follow-up Study] . [city: Helsinki] : Sosiaali- ja terveysministeriö .
Turunen , S. , and P. Mölsä . 1984 . Kehitysvammaisten kuntoutuksesta: Paimion keskuslaitoksessa ja sen poliklinikalla hoidettuja kehitysvammaisia koskeva seurantatutkimus 1969–1981 [On the Rehabilitation of Developmentally Disabled: Follow-up Study from Paimio Central Institution] . [city: Turku] : Kansaneläkelaitoksen kuntoutustutkimuskeskus .
United Nations . 1981 . “The International Year of Disabled Persons.” http://www.un.org/esa/socdev/enable/disiydp.htm
Urponen , H. , and K. Urponen . 1979 . Pitkäaikaissairaiden lasten elinympäristö ja sosiaalinen selviytyminen Suomessa [Life Environment and Social Coping of Children with Chronic Illness] . [city: Turku] : Turun yliopisto .
Vehkakoski , T. 2000 . Vammainen lapsi ammatti-ihmisten asiakirjoissa: Diskurssianalyyttinen tutkimus lausuntojen kielenkäytöstä [A Child With Disabilities in the Documents of Professionals: A Discourse Analytic Study] . [city: Jyväskylä] : Jyväskylän yliopisto .
Vehkakoski , T. 2006 . Leimattu lapsuus?: Vammaisuuden rakentuminen ammatti-ihmisten puheessa ja teksteissä [A Stigmatized Childhood? The Construction of Disability in the Speech and Texts of Professionals] . [city: Jyväskylä] : Jyväskylän yliopisto .
Viemerö , V. , and C. Krause 1998 . “ Quality of Life in Individuals with Physical Disabilities .” Psychotherapy and psychosomatics 67 ( 6 ), 317 – 322 . doi: https://doi.org/10.1159/000012297 .
Vuolle , T. 1993 . “ Paikallisesta hyväntekeväisyydestä valtion asiaksi: aistiviallis- ja raajarikkoiskoulutus Suomessa 1846–1892 [From Local Charity to the Duty of the State: Training of Sensory Handicapped and Crippled in 1846–1892] .” Studia Historica Jyväskyläensia 47 , [city: Jyväskylä] : Jyväskylän yliopisto .
Väätäinen , H. 2003 . Rumbasta rampaan: Vammaisen naistanssijan ruumiillisuus pyörätuolikilpatanssissa [From Jive to Lame: Corporality of a Female Dancer in the Wheel Chair Dance Contest] . [city: Åbo] : Åbo Akademi University Press .