Behind the book: Deinstitutionalisation Revisited
Published in Social Sciences
Sustainable Development Goal 10, which focuses on reducing inequality, includes a specific target (10.2) aimed at promoting the social, economic, and political inclusion of groups at risk of exclusion. Among those most vulnerable to exclusion are individuals with intellectual disabilities. Historically, this group has been subjected to segregating policies and institutionalisation, often resulting in poor living conditions and minimal interaction with mainstream society.
Since the 1960s, these traditional segregation policies have gradually been challenged and replaced by initiatives promoting inclusion, notably through the transition from institutional care to community-based services. The Nordic countries have played a pivotal role in shaping these evolving policies and practices. Their influence includes the early adoption and dissemination of the principle of normalisation—originating in Scandinavia in the late 1950s—and comprehensive deinstitutionalisation efforts during the 1990s. Two Nordic countries, Norway and Sweden, were the first countries to fully close institutions for individuals with intellectual disabilities.
The recently published open-access book Deinstitutionalisation and Later Developments in the Lives of Persons with Intellectual Disabilities – Lessons from the Nordic Countries, edited by Tøssebro and Gustavsson, examines the policy debates and evolving service structures in the Nordic region before, during, and after the transition away from institutional care. The book explores shifting ideologies and the role of values such as social justice, participation, and inclusion. It also analyses the political processes that facilitated the move to community-based services, evaluates the extent to which policy ideals were realised in practice, describes the living conditions of individuals within the new service frameworks, and assesses developments since the reform era of the 1990s.
Although the closure of institutions is widely regarded as a success in the Nordic region, the book highlights signs of stagnation and regression as political attention waned after the turn of the century. It challenges the notion of deinstitutionalisation as a “mission accomplished.” While living conditions have improved significantly, the reforms have not achieved the social, economic, and political inclusion of individuals with intellectual disabilities. The authors argue that the reform movement must be revitalised.
At the same time, the closure of residential institutions appears to have paved the way for more informal and subtle changes that, although less visible, may contribute to greater social inclusion. For example, individuals with intellectual disabilities have become a natural part of everyday life—they are seen in shops, on public transport, in schools, neighbourhoods, and even on television. Additionally, the reform ideology seems to have influenced self-perception. There are emerging examples of self-organisation among individuals with intellectual disabilities, and the rhetoric of reform has evolved into a kind of “hermeneutic resource”—a tool that young people use to understand themselves and their social rights.
In his chapter, Gustavsson analyses how members of the “first integration generation” internalise these new policy ideals to construct multifaceted self-identities. He references Sven, a young man with intellectual disabilities, who describes himself as someone who has “managed to come a long way moving into society, so to speak” (p. 115). Sven sees himself as a “living project of social inclusion,” demonstrating familiarity with the reform narratives of the 1980s and 1990s and applying them to his own life journey.
This book is intended for an international audience, as the lessons from the Nordic experience have relevance far beyond the region. The reforms of the 1990s continue to offer inspiration for policies aimed at promoting inclusion for marginalised groups. Moreover, the subsequent developments underscore that such missions are never truly complete and must be continually safeguarded. The book also illustrates that alongside high-profile reforms, more subtle shifts in self-perception and societal attitudes can occur—changes that are equally important in fostering inclusion.
The authors are pleased to have published the book as Open Access, enabling broader access for readers interested in reducing inequality and promoting inclusion for groups historically subjected to segregation.
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If you'd like to know more about the book, you can access the content here in Open Access: https://link.springer.com/book/10.1007/978-3-031-91652-6