Expert historians Jan Walmsley and Simon Jarrett have edited this book, focusing on the dominant patterns guiding policy on intellectual disability and practices in the twentieth century in 12 different countries. The main developments in 6 European countries (Greece, the Czech Republic, Hungary, Austria, the United Kingdom and Iceland), the United States, Ghana, New Zealand, Australia, Taiwan, and Hong Kong are described by experts with knowledge of each of the contexts. This is accompanied in each case with life stories that illustrate and exemplify the impact of social policies on the life trajectories of people with intellectual disabilities.
This book offers a unique opportunity to have a double perspective of the history of intellectual disability in the period studied: on the one hand, it allows us to explore specific practices aimed at people with intellectual disabilities according to the historical, political and cultural context of each country; on the other hand, it helps to clearly identify dominant patterns of a transversal and transnational nature, both in the manner of understanding disability and in the political and social response to the needs of people with disabilities and their families throughout the twentieth century. The life stories in each chapter tell of the experiences of people with disabilities and, in some cases, their families, help to illustrate how policies tend to condition the lives of people with disabilities and their possibilities of social inclusion. The theme of the book, its transnational approach, and the illustration of the specific facts of each country with personal accounts makes it highly recommended for researchers in the field of disability, professionals linked to social policies and the distribution of support, and people interested in the defence of the rights of people with disabilities.
Regarding the contributions made by the book, it should firstly be emphasised that they show us the value and make us aware of the existence of common/transnational patterns, including:
The eugenic discourses that, reaching beyond borders, determined the systematic abuse and violation of the rights of people with disabilities in all countries. In some contexts, this was manifested as practices of forced sterilization, elimination and killing of people with intellectual disability during the first half of the twentieth century. These ideas were often maintained throughout much of the second half of the century, in the form of, for example, forced sterilizations, and in practices based on the abusive use of punishment and the control of people’s lives by those responsible for institutions and the professionals in them.
Despite the implementation of community-based living models, institutionalized practices are still maintained in many countries. Personal assistance is still an inaccessible resource for people with intellectual disabilities. People’s lives continue to be approached from less personalized perspectives, with few opportunities to exercise choice and control, and a comprehensive perspective that contemplates all dimensions of the person is lacking.
Setting up practices of resistance, especially by relatives and above all by mothers, who struggle at times to avoid institutionalization; fighting against the administration to claim the right to the education of their children and the creation of appropriate support services when they become adults. And who, in many cases, contribute financially to the configuration of support alternatives.
In advancing their rights, people with intellectual disabilities with severe needs of support or “severe impairments” are at the back of the queue at all levels: not only to access education, but also to receive personalized support in the community.
Reading the book shows that it has been relatively easy to close large institutions, but not so easy to replace them with personalized supports that respect the rights of people to live their lives according to their interests, choice and control. A second contribution of the book is, therefore, to help us reflect on the near future, and to ask ourselves questions about possible elements that can help overcome the strong inertia of modern institutionalization practices (which remain in shape often in services organized from the community-based model), and to advance in the achievement of the ideals that are beginning to be incorporated especially from the 70s, and the recognition of the rights of people with intellectual disabilities from the CRPD (NU, 2006). Among these elements, the role that local authorities can play in supporting community-based practices, given the progress in decentralization processes; the generalization of support systems based on people’s choice and control, such as personalized budgets; the processes of individual and collective empowerment of people with intellectual disabilities, and how to extend them to people most in need of support and their families.
Finally, the book emphasizes the need to explore our most recent history, taking into account the voices of people with disabilities, to understand what the parameters are from which supports for people with disabilities are organized. From this perspective, we think that it is vital to develop other studies that complement this work with the historical perspective of intellectual disability in contexts not explored in this edition (for example, Spanish-speaking countries).
University of Girona, Girona, Spain
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