Reviewed by Paula Hellal (Birkbeck University of London)
Published on H-Disability (July, 2013)
Commissioned by Iain C. Hutchison
This is a timely and interesting edited collection which examines disabled children’s interaction with medical and educational services. The chapters, two on educational services, the rest mainly focusing on medical, span the mid-nineteenth century to the late twentieth century. They are presented more or less chronologically, enabling the reader to gain an understanding of how, over the decades, attitudes have altered and the provision of care changed. From the mid-nineteenth century there was a growing interest in children and childhood, in physical and mental disability, and in defining the roles of the state and parents in providing care and support for disabled children.
Geographically, this is a diverse volume: issues of disability and contested care are discussed with regard to children’s experiences in various parts of the United Kingdom (for example, London, Wales, Glasgow) and in four other countries: the United States, Australia, Sweden, and Spain. Matthew Smith looks at the history of the use of pharmaceutical products in the United States to treat psychiatric disorders (a subject currently of considerable interest in the United Kingdom). Lee-Ann Monk and Corinne Manning highlight the links between nineteenth-century Australian and U.K. asylums for children with learning disabilities by showing that the institution they examined, Kew Cottages, Melbourne, was inspired by and modeled on the Earlswood Asylum for the training of “educable idiots.” Staffan Förhammar and Marie C. Nelson look at the history of Apelviken, an institution established in Sweden in 1902 to treat children with non-pulmonary tuberculosis, and José Martínez-Pérez and colleagues research the care received by children with polio in mid-twentieth-century Spain.
These interesting and well-written chapters enable the reader to gain some sense of childhood disability experience and care across cultures and languages. However, although the authors of all the chapters consider, in varying detail, the political, social, and economic aspects relevant to their study of disability and contested care, it would have been useful if the editors had highlighted how the differing national frameworks responding to aspects of disability led to variations in experience. In particular, the book would benefit if the rationale for including research from Spain and Sweden was made explicit since France and Germany, countries with long histories of intervention into disabling conditions, are not featured. Even within the United Kingdom, different frameworks and interpretations resulted in different care and experiences. These differing approaches illuminate political, social, and economic considerations. Angela Turner, for example, shows that Scotland’s commitment to separate educational facilities went further than England’s, while Steven Thompson looks at the South Wales coalfields’ distinctive “mixed economy of care” that set it apart from other areas in the United Kingdom (p. 43). A more detailed discussion by the editors of the geographical variations in care might have been to the book’s advantage.
Although Disabled Children covers a time span of a century and a wide geographical range, a number of common themes run through all the chapters, making the work relatively cohesive. As the title suggests, the main theme is that of the contested nature of care. Many contributing authors go into detail as to how the institutions under discussion financed the care they provided. Other issues highlighted include: how the medical or educational services were allocated to disabled children; how this care was accessed; and the relationship that existed between service providers and disabled children and their parents. The political and social factors involved are also given due consideration. For example, Förhammar and Nelson state that their study “tries to place the Swedish coastal sanatoria within the political as well as medical contexts within which they developed” (p. 105).
Some contributing authors point out that, in a time of little financial support for families, a non-productive child could be a terrible financial burden. Others investigate how the state, likewise, was concerned with future productivity. Angela Turner shows how special education in Glasgow since 1945 has been strongly influenced by wider health and welfare policies. With economic contribution considered vital both for the individual and the nation, Glaswegian special schools sought to teach children so that they were able to seek employment, typically in “suitable,” low-skill jobs. Similarly, Martínez-Pérez and colleagues highlight how, in the mid-twentieth century, attention turned towards helping polio victims become “useful workers and citizens of the future” (p. 142). In the book’s final chapter Smith, considering the history of Attention Deficit Hyperactivity Disorder (ADHD) in the United States, focuses on education, psychiatry, and patient/parent activism to describe educational success as being closely tied to political objectives: “the notion of disability … was connected with an inability to contribute to the goals of the state” (p. 177).
The period covered in Disabled Children saw the growing availability of specialist resources and trained professionals to support children with disabilities. As laws were passed to provide protection and money was spent on their development, health-needs children were studied and monitored on a scale never seen before. A major theme of the book is whether these specialist and targeted services contributed to the marginalization of disabled children. The family, mostly left to its own devices in the early Victorian period, became subject to increasing intervention and control during later decades. Some of the contributing authors make the link clear. For example, Anne Borsay in her investigation of a century of British advice literature makes the point that: “in parallel with antenatal monitoring was a growth in inspection or surveillance to identify disabled babies for treatment” (p. 90).
From the latter decades of the nineteenth century, the growing concern over the state of a nation’s health, and changing attitudes toward children and childhood, saw a focus on negative perceptions of disability. Some conditions were linked with crime and deviancy, supposed hereditary defects were the subject of medical debate, and solutions to reduce the incidence of disability or to separate the disabled from the rest of society by founding specialist houses or asylums were proposed. Amy Rebok Rosenthal looks at the debates about insane children in the late nineteenth century, debates that were connected to class, poverty, and morbid heredity. By the late nineteenth century the problem of insanity had become an issue of public safety, with insane children targeted by legislation “that envisaged not only state protection for vulnerable individuals but conferred on state officials the right to remove such persons from their homes” (p. 30). The same fears over hereditary issues lay behind the oralism/manual signing debate, the subject of Mike Mantin’s chapter. Mantin looks at the history of Wales’s primary deaf institution, the Cambrian Institution for the Deaf and Dumb, focusing in particular on the work of headmaster Benjamin Payne, himself deaf, and who played an important role in the debate.
From the late nineteenth century, there was growing concern that parents were insufficiently prepared for the task of rearing their children and required assistance from outside sources. Advice from various authorities began to proliferate. Borsay describes the advice literature, much of which warned new parents or parents-to-be against begetting disability, as painting “a disturbing picture of the negative ways in which disabled babies were perceived” (p. 97). Disability tended to be portrayed as a deviation from the norm that should be prevented if at all possible. Guidance to parents also came about in the form of health visitors (the subject of Pamela Dale’s chapter) while José Martínez-Pérez and co-authors note that the politicization of healthcare in Spain in the twentieth century saw a growing emphasis on providing medical guidance to parents and carers of children affected by polio while “direct intervention became less common” (p. 141).
In recent decades, people with disabilities have gained more control over their lives, laws have been passed to try to ensure a fairer society, and voices have started to be heard. However the focus has largely fallen on adult disability rights. The special needs of disabled children, as the editors of Disabled Children argue, “can too easily become marginalized within wider debates about both children and disability” (p. 12). Recently, the importance of uncovering the voices of those with disabling conditions has been identified. The contributing authors make use of varied sources to explore the issues discussed in their chapters--for example, admission records, case notes, legal and political documents, medical literature, parental guidance literature, newspapers, and letters. Many try to give a flavor of the daily lives of the children under consideration. Martínez-Pérez et al. analyze and contrast the experience of twenty-five polio survivors using written sources that include legislative records, hospital documents, scientific papers, and World Health Organization reports. Monk and Manning make use of case notes and admission records to try to depict daily life in Kew Cottages, but point out that the experiences of the children are hard to uncover from these sources, which say little about individual lives or changes within the institutions. Perhaps the most common theme running throughout Disabled Children is the difficulty in getting access to the disabled child’s own voice, to the real experiences of the care provided when often the only extant records are those from the perspectives of the institutions where the children were treated or educated. With no firsthand account of life in Kew Cottages, Monk and Manning feel the “archive reflects the historical disempowerment and subsequent silencing of people with learning disabilities” (p. 74). These authors make use of oral testimony to good effect, emphasizing that such histories are vital. As they state, “such archival silence emphasises the importance of oral histories and life stories in recovering the experiences of inmates. Recollections … let us see the often hidden world of the institution from a perspective that survives only in fragments in the archives” (p. 86).
Pat Starkey also makes it clear that while much valuable information can be uncovered by close analysis of primary sources, much still remains hidden. In Starkey’s case, admission records and case notes were used to illuminate the experience of care in the House of Charity for children with orthopedic problems in Victorian and Edwardian London. She points out that many questions will remain unanswered, for example, how did the children make their journeys from House to hospital outpatients’ clinics? Did the House have its own medical equipment? Who supervised and assisted the children with feeding and washing? Did the parents visit? How did the children achieve discharge? Rosenthal describes a change in the content of admission records of Kent County Asylum over the time period studied. Testimony from family, neighbors and officials all played a role in committing children to Victorian asylums, but the admission records became less personal over time, with only brief medical statements and fewer family references.
Disabled Children is wide-ranging in another respect: the contributing authors investigate a variety of medical conditions. Some of the disabilities looked at in detail include orthopedic problems, tuberculosis, polio, ADHD, insanity, deafness, and learning disabilities. There is some mention of care offered to those with epilepsy and some discussion of the emotional/psychological impact of childhood disability. This is particularly the case in Sue Wheatcroft’s chapter on child guidance services, but the issue is also raised by other authors (for example, Mantin, and Monk and Manning). Wheatcroft investigates the emotional effect of wartime evacuation on children, how authorities tried to cope, and what was learned about the emotional needs of children during this period.
As already stated, most authors use examples from a range of sources to illuminate various points. This is a major strength of the book, giving a voice to the disabled children described and providing the reader with a glimpse of past lives. Reading Disabled Children brings home how valuable these primary records are (despite the limitations described by some of the authors). Monk and Manning’s inclusion of the oral testimony of a man who spent his childhood in Kew Cottages makes particularly interesting reading.
Disabled Children shows how thinking about childhood disability has changed in the several countries discussed. By closely examining the care offered to children with various disabilities, any conflict between the relevant parties--for example, the state, voluntary organizations, society, parents, the children themselves--can be uncovered and evidence for new ideas surrounding childhood and disability viewed within the various political, economic, and social contexts. The book is more than a record of past attitudes and assumptions. As the editors note, the problems discussed in the book are far from solved today. Disabled Children will be of interest and value to scholars in a number of fields and to anyone who wants to learn more about disability and childhood.
If there is additional discussion of this review, you may access it through the network, at: https://networks.h-net.org/h-disability.
Paula Hellal. Review of Dale, Pamela; Borsay, Anne, eds., Disabled Children: Contested Caring, 1850-1979.
H-Disability, H-Net Reviews.
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