From social menace to unfulfilled promise: the evolution of policy and practice towards people with intellectual disabilities in the United States

This chapter uses the stories of three families, the ‘Kallikaks’, the Kennedys and the Fergusons, to narrate the key stages of the history of intellectual disability in the twentieth century. The so-called‘Kallikaks’ were used as part of the vicious eugenic libel against the intellectually disabled population that stoked the cruel mass institutionalization programmes of the early century. This section tells the story of Emma Wolverton, one of those on whose life stories the mythical Kallikaks were based and created to spread fear and drive segregational policy. The story of the famous Kennedy family shows the post-war journey of the intellectually disabled person from a hidden site of shame to the policy reforms of the community return. Finally, the story of the author’s own family shows some of the great post-reform liberating shifts towards a life of choice and inclusion that have taken place, and alerts us to the brooding threats that still lurk.

Time of paradoxes: what the twentieth century was like for people with intellectual disabilities living in Czechoslovakia/Czech Republic

This chapter explores life in Czechoslovakia (later Czech Republic) in the 20th Century for people with intellectual disabilities. It opens at the time that the Czech lands were part of the Austrian-Hungarian Empire. This was a period marked by efforts to increase the quality of institutional care for people with intellectual disabilities. The authors then describe the period of communism. They discuss the controversial nature of an Education Act (1948), which contained a well-established network of special schools for students with disabilities as a regular part of the school system, and yet it introduced the concept of “being uneducable” for students with severe and profound intellectual disabilities. The authors also debate the role of a parental movement in advocacy for the rights of people with intellectual disabilities. The chapter concludes with the period after the fall of communism, when compulsory education was introduced for all children with no exception.

Intellectual disability in Hong Kong: then and now

This chapter explores policy and practice in Hong Kong, and their impact on people with intellectual disabilities and their families. From a historical perspective, this development has consisted of three phases. Hong Kong, the world’s most populated area, remained a British colony until 1997, when it became a special administrative region of the People’s Republic of China. Early service provision began in the 1970s. This was followed by a so-called ‘golden period’ in the 1990s when it seemed that a new age of rights and family- and self-advocacy was dawning. From around the end of the twentieth century a worrying period of minimal progress and stagnation has threatened to submerge earlier gains. Life-stories reflect this trajectory from defiance and struggle in the early days, through the euphoria of progress and change, to the present state of anxiety as victory seems to appear in danger of receding.

Paradoxical lives: intellectual disability policy and practice in twentieth-century Australia

This chapter uses the history of Kew Cottages, (1887-2008), the first purpose-built institution for people with intellectual disabilities in Australia, as a lens through which to explore the history of Australian intellectual disability policy and practice. Influenced by international thinking, the broad outline of Australia’s policy history follows a similar pattern to other western countries. In the first decades of the twentieth century, in an atmosphere of anxiety about the ‘menace of the feeble-minded’, policy emphasised institutional segregation. In its last decades, policies of normalisation and deinstitutionalisation promised to return people with intellectual disabilities to the community. Yet the life stories of the Cottages’ residents recounted here reveal that in the nexus between policy and practice, the lives of people with intellectual disabilities could prove paradoxical.

Introduction

The introduction explains the selection and range of countries that are covered by the book and offers a brief historiography of the field. It also discusses the use of life stories in intellectual disability history and analyses the differing roles that eugenics had placed in this history. An overview of chapters is then followed by a discussion of the complexities of language in intellectual disability history generally and in a transnational approach in particular. This section then brings some of the main themes of the book, in particular the role of families, problems of exclusion and inequality, the formation of out-groups and the question of progress. Finally the section discusses future possible transnational approaches in this field of study.

Intellectual disability policy and practice in twentieth-century United Kingdom

In the first half of the twentieth century UK policy, dominated by the passing of the Mental Deficiency Act in 1913, was not driven solely by eugenic discourse but by a commonly held assumption across the ideological spectrum that the ‘mentally deficient’ population needed ‘fixing’ in some way. Lurking beneath this desire for completeness and the tidying up of the social sphere were deep anxieties about urban modernity and human capacity to meet its challenges. In the second half of the century we see the voice of the person with intellectual disability finally emerge as self-advocacy, as the institutions met their end and care in the community became policy. A so-called ‘golden period’ in the 1990s, characterized by thoughtful policy and a commitment to inclusion, raised hopes of genuine citizenship and improved support. The chapter ends however with a cautionary warning from the 21st century, where gains seem to be receding and the institution rising from its grave.

‘My life in the institution’ and ‘My life in the community’: policies and practice in Taiwan

In Taiwan social services for people with intellectual disabilities have been established since 1980 and a movement supporting people to live in the community was launched in 2000. However, deinstitutionalisation has never been a state policy and it has rarely been considered and recognised by parents and service workers. Although Taiwan is not a member of the UN, it passed into law an Implementation Act based on the UN Convention on the Rights of Persons with Disabilities (CRPD) in 2014. Thus the Taiwan government has a legal responsibility to comply with the CRPD’s general obligations. This chapter firstdescribes the history of people with intellectual disabilities in Taiwan and articulates its historical and political context. Secondly, it narrates the life stories of three citizens with intellectual disabilities to express how their lives, both in institutions and in the community, have been intertwined with wider social, historical and political contexts. The conclusion examines the need for the continuation of advocacy concerning the right to choose where to live for people with intellectual disabilities in Taiwan.

People with intellectual disabilities in the European semi-periphery: the case of Hungary

This chapter provides an overview of how the situation of people with intellectual disabilities transformed in Hungary during the twentieth century. Focusing on four main historical periods – pre-1945, state socialism between 1945 and 1989, the era of post-socialist transformation from 1990, and the current period following Hungary’s European Union membership in 2004 – it highlights the development of policy and practice, and their impact on people. The chapter mostly draws on historical sources, and the analysis of published data and research. In addition, three vignettes illustrate some ‘typical themes’ in the life trajectories of individuals with intellectual disabilities and the various forms of exclusion they face in contemporary Hungary. Although the country underwent major political and societal transformation in the twentieth century, the exclusion of people with intellectual disabilities – and their families – remained a constant feature across historical eras and political regimes.

Intellectual disability in twentieth-century Ghana

This chapter recounts, for the first time, the twentieth-century history of intellectual disability in Ghana. the first sub-Saharan British colony to achieve independence in 1957. It outlines the stark clash between the relative recently introduced beliefs of Western individuality and the long-standing beliefs of a more community-based society. In traditional rural Ghanaian society, the mildly or moderately intellectually disabled persons could integrate with relative ease into a labour-intensive agricultural economy, where literacy was not at a premium. For the severely or profoundly disabled person, life was less predictable. Seclusion or even infanticide could arise from both spiritual beliefs about the influence of evil forces or punishment from the gods, and the view that such an individual might not be fully human. Additional factors were economic concerns about families bearing the load of an unproductive person, allocating precious financial resources to the education of a person seen as unlikely to benefit from it, and anxieties about employment and marriageability. Current life stories indicate how some people with intellectual disabilities in Ghana are learning to manage and resist these cultural complexities and assert their own humanity.

Tracing the historical and ideological roots of services for people with intellectual disabilities in Austria

This chapter begins with an exploration of the production and development of eugenic discourses, explicitly adopted by institutions at the beginning of the 20th century and subsequently reaching their height during the Nazi regime, Though officially condemned, these discourses continued to influence service provision after 1945, when most people with intellectual disabilities who did not live with their families had to live in psychiatric hospitals or large Christian or state-run institutions. Parent-led organisations, developing from the mid-1960s, led to the first significant change in quality of services for persons with intellectual disabilities. In the late 1970s, the adoption of new ideas of normalisation and integration led to the implementation of de-institutionalisation programmes. These however left some large institutional settings untouched and, despite several policy changes and efforts to create a more personalised system of care since the 2000s, the institutional system of service provision continues to cause serious problems, and eugenic discourses and practices endure.