The review of Nordic disability research that follows in this special edition makes clear that structural and post-structural perspectives are important, that the role of welfare and policy organisations have been a key facet of disability research policy and that disabled people's organisations have had diverse and quite varied contributions across Nordic countries. Indeed it would be wrong to talk of one Nordic approach to disability research, a perspective that is sometimes adopted in UK disability studies. This view obscures a richness of difference across and within these countries; it also hides the dynamic and vibrant research cultures that are battling to survive in some Nordic countries. What can be said with greater generality is that Nordic disability research and studies have been less engaged with materialist and Marxist constructions of the ‘disability problem’. Whether this is a weakness depends on one's perspective of course, indeed the relationship between radicalism and social/political theory bears testimony to very different histories of absolutism, revolution and reform. Nordic disability research has arguably been more reticent than, for example, the USA or wider European social theory to embrace more philosophically grounded work to emanate from Foucault, Deleuze and so on and to trade these for more pragmatic theories reminiscent of the American pragmatists. This is of course changing rapidly, and one benefit of a relatively recent entry to such debates is an uncliched engagement with a range of valuable perspectival approaches to disability. After all which grand theory can encapsulate economic barriers, institutional practices, identity disablism and ableism? Nordic disability research in being less riven with structural vs. post-structural, economics vs. identity, is somewhat better placed to grasp the nuances of disability, impairment and contemporary shifts in advanced societies.
What is often not recognized however is that Nordic countries, in being founded in high-investment welfare states, have (Eklund, Berggren, and Trägårdh 2011; Esping-Andersen 1991) from the outset placed disability research within a state/corporate framework, such that much founding research on the social aspects of disability was driven by state research institutes or at the very least strong policy drivers. This according to the articles in the special edition is something of a ‘double-edged sword’. Whilst the involvement has ensured a key connection between wider social welfare imperatives and research, the exact shape of disability research has often been framed rather paternalistically as what disabled people want. This has meant that some disability research imperatives have had a distinctly medical orientation or have not been based on the views of disabled people. This top-down heritage has combined to support research historically that has been a sometimes strange mix of pragmatism and paternalism. One important implication of a strong statutory framing of disability research however has been a heightened awareness of major supra-national disability policy developments. Reading the collected papers for this special edition makes clear that Nordic country's engagement with key policy drivers such as the UN Convention on the Rights of Disabled People has been unrivalled elsewhere – where, for example, Britain dreams of greater self-determination in policy and fiscal terms and the USA places greater faith in market solutions to a range of social issues. Indeed much systematic research activity in Nordic countries was prompted by the UN Year or Disabled People in 1981. It is hard to convey this degree of engagement to non-Nordic disability researchers where the response to even important international conventions and directives is met with a mix of incomprehension or even contempt by many.
What each paper attests to is a willingness of state, universities, institutes and disabled people's organisations to enter dialogue over time to ensure that the voice of disabled people is more fully recognized in the disability research agenda. The extent to which this has happened varies as would be expected, whilst in some country contexts, degrees of uncertainty or distrust remain between disabled people's organisations and state/university research outlets. This can be read as a positive development however, if we assume a dialogue exists it may be viewed as a healthy separation of powers (perspectives) as political historians put it. Certainly, as with the USA and UK, there is a perceived risk of co-option by government and developed university research centres – where a freshness of viewpoint and what Habermas called an ‘ideal speech situation’ (Habermas 1971).
There are ways in which Nordic disability research and certainly disability studies are however ahead of both the USA and the wider European context. The degree to which intersectionality and especially gender features in disability research is arguably more significant than anywhere else globally. The late entry into disability studies, established sociology department's interest in gender and family structures have created a very exciting sub-genre of disability studies, of which Barron and Traustadottir are key exponents. These interests are important, both in raising the profile of intersectional understandings of disability and also making possible inter-group new social movement struggle as is evident in the links between poverty, environmental and anti-violence movements globally. The rejection of a master lens to view social structures and dynamics, although criticized as constrained liberalism by materialists, can arguably make for greater concerted responses that link disability, class, gender, age, ethnicity in a way that does not simply trade one exclusion for another. Indeed it could be argued that intersectionality is profoundly concerned with social structure and links to good opportunities and valorized identity.
Despite developments in disability research and the exponential growth of disability studies in Nordic countries, the exact extent to which disability researchers, many of whom are themselves disabled academics, can work to make research more relevant to disabled people's needs is a moot point as the proposed Nordic Network for Disability Research (NNDR) conference keynote (2013) from Kalle Könkkölä (Threshold Association, Finland) makes clear research remains distant from many disabled people's concerns. There is a sense in Nordic disability research of very mixed views as to the future relationship between the academy and activism – again this is healthy. The exact extent to which academics feel they can be able to reach independent views on any given issue is felt to be important for some, whilst for others the decision as to whose side you are on is central to the research endeavour. This diversity of approach is not simply a cross-national difference, as there are notable differences within country contexts also. What might be seen as important is that Nordic disability research reflects the range of perspectives, types of research methodologies, epistemologies and critical standpoints and that ‘critical’ never takes on a clichéd identity and is refreshed by a high-quality engaged disability research.
What then of the contributions? The paper by Soder on Swedish disability research makes clear the relatively long history of disability research in that context. In providing what he calls a ‘short version of a long story’ he breaks the story of disability research into four phases: early initiatives, getting integrated, getting established and late developments. Soder makes clear the historical absence of disability research in the Swedish universities in the 1960s and 1970s. Research that was conducted interpreted disability as a branch of medical research, whilst the few large scale-funded projects were evaluations of state policies on disability which were not grounded in critique, social science evidence or the voices of disabled people and their organisations. The story Soder relates highlights changes in every aspect of disability research – the increased connection between university research and disability, an increasingly decentralized statutory influence on research, and the disenchantment and growing voice of disabled people's organisations in framing and influencing disability research. Soder makes clear the inter-disciplinary nature of disability research in Sweden, with social work, sociology and education playing key roles in the development of this area. He makes clear the early role of parent organisations, most notably the Swedish National Association for Persons with Intellectual Disability (FUB) in forging changes in pushing for sheltered workshops and alternative models to traditional often dependency-creating institutions. These in turn led to cross-disciplinary research by the ALA Foundation. The work by Gunnar Kylen and Lars Kebbon, rooted in psychology and concerned with intellectual disability, helped establish a relational and holistic construction of disability in a way that took disability ‘out of the clinic’.
Despite these promising early developments, research on disability in the 1960s and 1970s was distinctly top-down, evaluative and empirical. In this sense the research agenda were already set and were administrative/reformist in a way that conformed to wider state concerns and sensibilities. As Soder notes, even progressive, more bottom-up ideas were ‘caught in the reformer's perspective’. This reflects concerns with paternalist views in wider Europe on disability – that the state knows best. Of course evidence was constructed paradigmatically as state normal science to paraphrase Thomas Kuhn. Whilst the 1980s witnessed disabled people's organisations trying to influence the research agenda, money was allocated on an administrative basis, was often short term and was largely allotted to psychologists and educational researchers – the new clinicians one might say. Sociology and social work had a much inferior position and received little substantive funding in the 1970s and 1980s. However the International Year of Disabled People (1981) and the government-sponsored reader (Strachal 1981) did symbolise the green shoots of a more ambitious basis for disability research in Sweden beyond professional and evaluative research. University research was finally recognized as a fit place for disability studies as a free-standing discipline respected by university and state alike, with both Goteborgs and Uppsala creating professorships in disability research. Other developments included the birth of a Social Scientific Research Council and the Swedish Institute for Disability Research at Linkoping and Orebro with an overtly inter-disciplinary base. Social science research on disability drew implicitly on North American symbolic interactionist insights on relations between disabled, non-disabled people and professionals (Bogdan and Taylor, Edgerton and Goffman), whilst also reflecting on the European traditions of, for example, Tonnies in exploring changing community and social dynamics in order to understand deinstitutionalisation, integration and limits to acceptance.
As with many advanced countries Sweden has witnessed the movement towards further critique of professional roles alongside greater self-determination. Unlike the UK, independent living movement there has however not been a close tie-in with more materialistic approaches to disability research. However as with the UK and USA an unlikely convergence of neo-liberal and more radical political ideas have coalesced around greater choices and control. In Sweden Soder describes the shift to self-made status and rebellion against bureaucracy as key features of the new ‘service’ environment. Not surprisingly research has followed suit with some researchers attempting to research more fully with disabled people and their concerns, whilst statutory and research council-funded research has begun to fund more exploratory and grounded studies as evaluation research is viewed more sceptically. However the shift of the locus of activity from the state to universities has not been seen by all disabled people's organisations as entirely progressive. As with the USA and wider European research, the relationship between academy and activism remains a challenging one. Some disability researchers want to preserve their independence at all costs and this view is often tied to both a belief in academic rigour and a commitment to equitable allocation of resource based on independent evidence. Other academics, closer to disabled people's organisations, assert that truly relevant research can only be grounded in the daily concerns or aggregate national needs articulated by disabled people. Clearly these debates will run on, what is clear from Soder's story of Swedish disability research is the rise of disability studies, a discipline where voices are often central and this is not likely to be diluted anytime soon given the value attached to participatory paradigms in research. Likewise debates as to whether disabled people are subject to economic exclusion/exploitation or are more akin to culturally stigmatized groups continue to be debated (De los Reyes and Mulinari 2005). The growing internationalisation of disability research, the influence of disability studies, the influx of greater theoretical insights and the intersectional links (Barron 2008) to other substantive social divisions and structures are likely to enrich Swedish disability research (Söder 2009). The relational and more empirical tradition is still evident in Sweden, whilst the future of disability research looks to be secure. The challenge for Soder is
To balance the need for autonomous research with the ambition of being politically relevant without falling for the temptation of being politically correct is one of the challenges social disability research in Sweden will have to deal with in the near future.
Traustadottir, Sigurjonsdottir and Egilson provide a very stimulating picture of disability studies in Iceland. Although the smallest Nordic country detailed in the special edition, even a cursory reading points to a great deal of activity to actively place disability studies and disability research ‘at the same table’. The authors make clear that disability studies dates back only to the mid-1990s, but since then named masters and centre in disability studies have been established and Iceland has been placed firmly on the disability research map. Although late to disability studies and research, academics have been successful in linking the academy and activism, arguably more so than any other Nordic country, whilst taking participatory research and research partnership principles very seriously. Qualitative research, the authors argue, has played an important part in Icelandic disability research and disability studies. Links with North American and wider global insights have helped ensure that Iceland is recognized internationally, but that through its outreach/inreach work has made its work a leading exponent of international disability studies, one that transcends the global North/South binary. Disability studies is interdisciplinary as in other Nordic countries with perhaps a greater overt link to humanities and minority group approaches in disability research. Key concerns from the mid-1990s onwards have been around disability, family, education and childhood (Bjarnason 2008a; Egilson 2011; Traustadóttir, Sigurjónsdóttir, and Gunnarsson 2010), compared to concerns with adulthood and economic concerns in many non-Nordic countries. Culture, folklore and place are important signifiers in Icelandic disability research. Traustadottir makes clear perhaps the most explicit attempt to export the insights picked up at Syracuse to European and international audience. The authors note the influence of welfare and citizenship as key aspects of the development of understanding disability as is common in the Nordic countries and the influence of normalisation and debates about inclusive education. On top of welfare constructions, academic insights from symbolic interactionism and labelling theory have been key founding ideas from the 1990s onwards. Disability studies itself went from an unacknowledged arm of health research to being part of social science course offerings, to being named offerings with international recognition. The authors point out that disability studies (following Taylor 2006) existed well before it had a name. The first academic programme in disability studies started at the University of Iceland in 2004 and made possible by a five-year grant from the Icelandic Ministry of Social Affairs. Disabled people input both teaching and research on disability issues and ensure the work at the university conveys the voices of disabled Icelanders. Traustadottir et al. make clear that despite the rapid upward trajectory of disability studies, the funding context in Iceland that supports best full-time students leaves the largely part-time market for courses under-resourced. Masters and PhD courses are often underpinned departmentally by BA study, but as with many European disability studies' outlets the market is largely for post-graduate study with little scope for BA cross-subsidy. This does not diminish the ambitions for disability research in Iceland as the Traustadottir et al. note:
Thus the future of disability studies will, in part, be directed toward the continuing emphasis on knowledge production that can support the full and equal rights of disabled people, barrier removal and an inclusive society that welcomes the whole range of human diversity.
The article by Bengtsson and Bonfils having the title ‘Danish Disability Research Over Half a Century’ suggests that research on disability has been undertaken for much longer than in, for example, Iceland. However, somewhat paradoxically, the study undertaken in 2011 on disability research in Denmark, Norway, Sweden and the United Kingdom (Bengtsson and Stigaard 2011) makes clear that even in the 2000s the amount of research being undertaken on disability was more limited in Denmark than the comparator countries. Unlike Sweden and Norway, disability research has not been funded significantly from public research councils, whilst university-based disability research is also far more limited than in Sweden and Norway. However where disability is studied, the range of sub-themes is actually quite broad – including living conditions, employment, economic support, accessibility and special education. This is welcome in the sense that many barriers might be understood together – how they limit disabled people's life opportunities. They do however feel like welfare state concerns which while important may exclude major concerns identified by disabled people. Much of the early research on disability was state-funded and concerned with education of disabled children. Disabled people's organisations were invited to contribute to policy developments, but the agendas appeared to be firmly set at this point. The work at the Danish University of Education and at the Department for Education at Aarhus University represent high peaks of disability research, but from within a very official worldview of the required research agenda. However in the 2000s research on cognitive, intellectual and communication impairments has also taken place at Aalborg University's social work department. Other research activity is of a stand-alone nature, driven by the passions of key individuals and often in spite of not because of strategic funding – for example, Frank Bylov's work on empowerment of people with learning disabilities at the University College of South Denmark.
As with most other Nordic countries, strategic research funding goes to generic but prestigious centres such as the Danish National Centre for Social Research (SFI) with funding often coming from the Ministry of Social Affairs on predetermined topics driven by macro-level policy agendas. Such a policy-driven approach sits neatly with the investment state principle behind many Nordic states – at regional and local levels, resource centres established in 1993 were tasked to undertake research on topics including disability to inform local services. Both national and local interpretations left little room for critical, exploratory or bottom-up research. Many evaluations the authors note are of private consultancies funded to evaluate government and state policy. The lack of a long-term philosophical commitment has led to inter-disciplinary centres which have to embrace more traditional approaches to disability from medical and rehabilitation science. The absence of disability research and disability studies discipline means disability researchers may feel very marginalized in traditional disciplinary structures in Danish universities. The Danish Disability Council aimed to correct this relative isolation by borrowing possible models to import from other Nordic countries. Despite arguing for greater long-term visions and investments, to date only three funded PhD commitments have emerged following the council's activities. What is perhaps surprising in Denmark, compared to, for example, Iceland, are the historically limited relations between disabled people's organisations and university/institute researchers. Bengtsson and Bonfils point to an historical mistrust of official research outlets and the fear of disabled people being co-opted and their voice lost in research. Why might this be? Perhaps the developed but official research infrastructure has been seen by disabled people to not belong to them, to be distant and imposed, compared to, for example, Icelandic research, which although very truncated and recent has managed to engage disabled people and their organisations much more fully. The authors make the point however that many existing research bodies do want to understand the barriers faced by disabled people and they note:
Hence there is clear potential in Denmark for building links between research institutions and interest organisations with a view to promoting a more strategic, long-range research effort in the disability sphere.
Certainly what is clear from the Danish example is that features such as economic citizenship, employment (Bredgaard and Larsen 2008), housing and living conditions have been central research concerns; the challenge has been it seems to develop sophisticated ways to map differences between disabled and non-disabled comparators in terms of living conditions and employment with no real improvements in the latter until the 1990s and 2000s. Despite the dearth of user involvement, perhaps ironically, key developments in disability policy have derived from consultations, but beyond a research context. The development of personal assistance in Denmark from the 1970s was well received. The research acknowledging this was not completed however until 2005. The authors conclude:
Disability research is in the main commissioned research, funded by government departments and to some extent by regional and local authorities. It comprised applied research often with a social policy aim geared to the needs of public authorities …[calls] …for broader-based social research, have not borne fruit.
The article by Jan Tossebro provides insights into disability research in Norway. As with Iceland, disability research in terms of social research has a recent history, going back only as far as the 1990s. Much before then was medical research looking at causes, features and clinical responses to the problems of impairment broadly interpreted as health problems. Funding changes afforded an expansion of disability into the social domains encapsulated in concerns with social problems and the adequacy of welfare provision for disabled people. Lange's study emanated for the first time from the Norwegian disabled people's movement (FFO) which aimed to promote a very different kind to that previously prevalent in Norway. The UN International Year of Disabled People some 10 years before had acted as a catalyst for change which in turn prompted the State Council on Disability to lobby for greater funding of disability research. Although modest sums were transferred, this supported a five-year programme of research on disability beyond medical concerns (The Research Council of Norway 1995). One of the first tasks in disability research was to unpick the contested field of the planned closure of institutions for people with intellectual impairments. This inadvertently brought policy reform and research evaluation together. According to Tossebro this new wave of disability research was completed by sociologists and political scientists and was linked to official concerns with normalisation, integration and living conditions. This, as Tossebro makes clear, placed disability research ‘in a somewhat ambiguous position between social engineering and social critique’. The size, purpose and reach of welfare provision as a central plank of Norwegian social and cultural life are presented as double-edged, being concerned with a range of aspects of disabled people lives, but largely reformist within an official model of policy research. Indeed he makes the point that although social disability research was novel, it was by no means free from the welfare settlement and was indeed a ‘child of the welfare state’.
Alongside a perception that research has been distinctly governmental is a parallel concern that disabled people's organisations may have limited blue-skies with fixed if important agendas around mainstreaming, personal assistance and so on. This leaves an image of researchers as rather cramped in terms of critical horizons, however it does contrast with Iceland where a much more fruitful relationship with disabled people's organisations does seem to have been possible. In turn this suggests that an assumed tension between academy and activism, research and policy may be seen as having greater affinities in a given country and historical contexts. However Tossebro is very clear that in Norway:
The links [of research] to politics may have hampered the development of perspectives, theories and research problems that are not related to the perceived information needs of the public administration.
Tossebro makes clear the role of Swedish colleagues, especially those at Uppsala in cross-fertilising ideas and refreshing disability studies in Norway. The organisation of Nordic seminars and a Nordic research association on intellectual disability (FUN) seem to symbolise the positive outcomes of a wider network of ideas beyond a single country. The Nordic Network on Disability Research was, Tossebro states, prompted in part by the dissolving of the FUN. For Tossebro, the status of disability research has changed, from a position where one almost had to apologise for being a disability researcher in the early 1990s to a position where longer-term funding from the Research Council of Norway (NFR) helped establish disability research on a better footing between 1995 and 2008. As with other Nordic countries named professorships in disability research/studies have grown up as have master courses in disability studies (such as the one at the Norwegian University of Science and Technology). Numbers of PhDs are being minted in a range of Norwegian universities including Trondheim, Oslo, Bodo and Lillehammmer. Disability research is now much broader than, for example, intellectual disability or special pedagogy and embraces a range of impairments and social barriers. Identity and lifecourse/transitions (Tøssebro and Lundeby 2002) research also take their place alongside more policy-driven studies. Economic research, employment, housing and poverty research (Eriksen and Næss 2004) continue to attract research attention; however some – such as employment research – seem not to have been located in disability research but classified under the heading of labour market studies (Halvorsen and Hvinden 2009). This is also the case in many countries globally. He also notes how Norwegian welfare systems tend as is sometimes the case in high investment states to be taken for granted and deserves to be studied more critically. Tossebro acknowledges the difficulties involved in developing more critical definitions of disability and notes the influence of the British social model in providing a fundamentally new language of disability. Tossebro notes how disability research funding is no longer ring-fenced and has been mainstreamed into work/welfare/labour market budgets, which, as he notes, cannot be a healthy development in Norway. Despite many very positive developments to critical research in disability he still concludes that official reformer policy agendas dominate research in Norway.
Tiimo Saloviita's article on disability research in Finland makes clear that although social research on disability has taken place since the 1970s, much early research as elsewhere in the Nordic countries was within special education departments. Rehabilitation and clinical approaches have also cast a long shadow in Finnish disability research. However the period from 1990s onwards has witnessed a significant growth in disability research which includes family research and new emancipatory models in research (Kroger 2003). Increased funding has afforded the expansion of doctoral student numbers in disability studies or the sociology of disability. Saloviita's own career reflects the changing locus of research, with his moving from research in a large long-stay institution for people with intellectual impairments to researching within a national disability organisation to being based in a university department. While professorships in special education are well established in Finland, the first chair in disability studies has only recently been made (although emphatically and with Finnish governmental support), and Saloviita feels this reflects the low status and limited voice of disabled people in Finnish society. That research reflects broader social constructions of the urgency and important of an issue and population. Saloviita presents that findings from a journal content analyses from the 1990s to date show that special education has been the focus of the majority of articles published by Finnish authors in Disability and Society and the Scandinavian Journal of Disability Research. This might be contested as some important references are in these journals and not squarely within special education explicitly (Vehmas 1999); however, it is reasonable to see much work until the 2000s as within special education and social care research as opposed to being explicitly aligned with disability studies.
It is not perhaps surprising that given the dearth of social research on disability in university and government departments that disability organisations have filled the research gap. FAIDD, the Finnish Association on Intellectual and Developmental Disabilities, has been a key research player since it (and its previous incarnations) established a research unit in 1979. Government research has embraced small amounts of disability issues, but disability has overall been marginal, even to large government-funded agencies such as STAKES (now the National Institute for Health and Welfare). Saloviita notes the hierarchy that attaches to disability (impairment) type and cause in Finnish society, that Finland industrialized late and that cultural values take many of their cues from small-scale agricultural society. Research reflects this – with people with intellectual disabilities although stigmatized getting greater attention as intellectual disabilities crosses service boundaries which take in the powerful professions of medicine and special education. In contrast research on people with mental disorders as adults who need systems of control does not receive the same degree of research interest. People born with physical disabilities receive a significant degree of research attention relative to population size, especially as they have developed strong group identity and advocacy since the development of the Finish self-advocacy movement in the 1990s. People with later life conditions receive little attention, which is perhaps surprising.
What is noteworthy about Finnish disability research is, also notable about disability policy, that institutionalisation was favoured until the late 1990s – even apparently reformist reports (Määttä 1981) actually served to perpetuate professional control and traditional service models (Saloviita 1989). This reflects strongly Miller and Gwynne's now heavily criticized English report on institutional care for ‘the physically handicapped’ – ‘A Life Apart’ which aimed to be a progressively grounded, but actually reflected deeply held professional views of disability (Miller and Gwynne 1972). Saloviita reflects some optimism however in seeing research by and with disabled people beginning to take shape (Loijas 1994; Teittinen 2000). I sense less of a sociological and social work influence or role in disability research from Saloviita's account and he makes clear the role of history and philosophy in taking forward important insights in disability in Finland (Häyry 2007; Vehmas 2002). Part of this might be attributed to the relatively low status accorded to social work education in Finland, traditionally being situated in vocational applied universities and not consistently founded on core principles until 1999 (Helli 1999). Social work in the USA and UK in contrast are situated in some prestigious university contexts and are seen as roughly equivalent to, for example, sociology. In presenting the mixed picture of disability research in Finland, Saloviita concludes:
Social research on disability has grown to a voluminous field of research in Finland …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.
As with much Scandinavian research, policy continues to play an important part in shaping what and who can be researched in Finland and the research questions asked. The Nordic model of welfare has of course changed somewhat. The chill winds of global recession and neo-conservative attempts to roll back the reach of the state through public spending cuts and labour market flexibility have begun to impinge on Nordic countries in the last 20 years. The increased emphasis on individualism can have positive unplanned outcomes in fostering greater grassroots activity which informs the future of disability research in the Nordic countries. Conversely the at times stifling influence of policy/reformer-led research may be reduced to aid a greater mixed economy of research. However, the lessons might be that reduced public spending on research and an emphasis on public spending priorities may lead to greater functionalism in supporting only research that fosters economic success. As economic systems have proven exclusive for many disabled people, we have to be suspicious of any moves which place all our social futures in the world of paid work. The above analyses, however, suggest that disability research has moved well beyond the clinic and often serve to actively oppose clinical hegemonies in disability. Not only can the clock not be turned back, but also the evidence suggests that disability research in the Nordic countries is increasingly diverse, vibrant and inclusive.