Families raising disabled children: enabling care and social justice, by Janice McLaughlin, Dan Goodley, Emma Clavering and Pamela Fisher, Basingstoke, Palgrave Macmillan, 2008, 228 pp., £52.00(hardback), ISBN-13 978-0-230-55145-9, ISBN-10 0-2305-5145-9
This is a book about parents raising disabled children. It is a book that explores the lived realities of parents of disabled children, an everyday life that, as the authors successfully demonstrate, is very complex and highly contextual. It is an everyday life that is strongly connected to parents' relations to professionals, as well as other parts of public space. Maybe most of all, this is a book that challenges and argues against longstanding ideas about families of disabled children. Particularly the stereotypes of parents raising disabled children as primarily suffering or in grief, or as either suspicious ‘part of the problem’ or heroic, self-sacrificing family-members, are challenged.
The book consists of 228 pages, including an extensive list of references and an index. It reports from a comprehensive project, founded by the Economic and Social Research Council (ESRC) named ‘Parents, Professionals and Babies with Special Care Needs: Identifying Enabling Care’. Given the rich data and extensive use of different theoretical perspectives, it sets out to be much more than a project report. It is an important contribution to theoretical understanding on families with disabled children, as well as the welfare system and professional practises.
Throughout the book, the authors illustrate how disabled children, as well as their parents, in different ways have to face narrow expectations of normality, public expectations of the normal parent and the normal child, and particularly medical understandings of normality and disabled children. These are understandings and expectations that has consequences in the everyday life of the families with children that are defined as outside the normal. However, the authors also illustrate how parents, in their experienced everyday life, reconstruct and negotiate the meaning of disability and impairment. They negotiate the meaning in meetings with professionals as well as extended family, and other members of the community. With its high emphasis on context, this book offers an important contribution as an alternative to a majority of individualized psychological perspectives on families of disabled children.
Although to a large extent in line with, and respectful to, the social model and the disability movement and its contribution to fighting marginalization, oppression, exclusion and discrimination, in chapter 1, the authors challenges some problematic aspects of the social model of disability. They argue for connecting disability studies closer to other minority perspectives and for ‘a critical disability study perspective which maintains an emphasis on the social, cultural and political foundations of disablism but unites this with the nuanced analyses of other transformative approaches’ (4). One such approach they draw upon is feminism; another is what they call critical and community psychologies.
Under the heading feminist critique, the authors point at the importance of not neglecting the gender perspective in caring practises, connected to gender inequality, negotiations within families and female identities, and ethics of care. Further, they comment on a critique of feminist perspectives, where care is often seen as a ‘burden’ placed on the carer, and thereby the disabled person as someone tragic and pitiful. However, in not debating care, families and family carers have been neglected in disability studies, or even been presented as part of the problem. Throughout the book, the authors demonstrate how the parents can be understood more as allies with their children, often being met with marginalization and stigmatization themselves, and as actively participating in giving more nuanced and also positive images of disabled children.
What they refer to as critical community psychologies is a branch of psychology, interdisciplinary in character that understands and theorise disabled people in terms of their cultural and political context, contrary to mainstream psychology's individualism. This perspective also includes a deep engagement with parents and their disabled children. On these backgrounds and through their empirical work, this leads to a number of analytical and theoretical considerations, which are well explained in chapter 1, and I would say that the theoretical perspectives and considerations are very well connected to the empirical work presented later in the book.
In chapter 2, the authors give a detailed description of the research data and they link the methodology to the theoretical perspectives in a convincing way. The researchers use ethnography and narrative inquiry as their main methodological approaches. They build on a large amount of data, observations as well as interviews with families in two regions, and focus group interviews with different groups of professionals. In being concrete and near to practical implications of the different procedures and methods applied, they contribute with reflections that are useful for other researchers or students beyond this particular project. This is even more so with chapter 3, where they discuss and exemplify different ‘research encounters’. Here, they describe in more detail their ethical thinking, and also some dilemmas or difficult situations they have met as researchers in close proximity to the families. I find this part valuable and insightful.
Chapters 4–8 offer the empirical and analytical chapters, all written by Janice McLaughlin and Dan Goodley. In chapter 9 they aim to put the different empirical parts together, discussing some main topics. It is not possible to give a fair representation of these rich empirical parts. Each chapter deals with different parts of family life, and the political, ideological context in which they form their life. Some of its strength lies in illustrative empirical examples that goes hand in hand with the authors more theoretical argumentation. They manage to give empirical examples and interpretations that, as in chapter 4, demonstrate the actual processes by which disabled babies are constructed as ‘different’, and not as children. Further, reading the book as a whole, what struck me was the advantage of a book compared to separate articles reporting from a project. The authors have many cross references between the chapters, and are able to deal with a subject in more depth, leaving other aspects to other chapters. In this way they can present a fuller picture of the complexity of the topics they deal with.
Chapter 4 offers an interesting analysis of how a child, as soon as it labelled with disability in one way or another, is no longer interpreted, talked about or treated as in the more common narratives of ‘normal’ childhood. Chapter 5 about ‘productive parental alliances’ particularly look at two different parental roles or identities: the professional parent and the allied parent. In chapter 6, the families' relationship to different aspects of the community context, including internet groups and parents organizations, is discussed. Chapter 7 deals with the criticism in disability studies and others, of the domination of professional authority over the lives of disabled people. In particular they discuss the impact on practices associated with ‘new public management’ (NPM), and the implementation of standardization via evidence-based practices on families as well as professionals. Chapter 8 deals with parents' care role and gendered aspects of the understanding and practices of caring.
The empirical chapters are in many ways argumentative in character and for most part I find their discussions reasonable. Building on rich empirical data, the authors are also offering many new insights and depths into the understanding of the first few years of everyday life with a disabled child. The project is built on a longitudinal design, following the families over a period of time. Even so, it is important to keep in mind that, in common with much literature on families with disabled children, it is the early years that are analyzed. These are very important, as they represent the beginning of individual trajectories. It would be interesting if they were able to follow up with similar analyses of families with older children.
In their argumentation, the authors seem particularly eager to criticise understandings of disability connected to medical diagnosis. Mostly, this seems fully reasonable, given the domination of medical understandings of disability in society, and the fact that many times a diagnosis only provides an illusionary certainty, and actually are of little practical help for parents and children in their everyday life. However, I question if possible positive or useful aspects of medical diagnosis could not have been discussed more. As they also argue for bringing the impairment into question, at times I was left with an impression that difficulties that may be interpreted as a consequence of the impairment are overseen, or that medical diagnosis has no use in understanding the person. For instance, some of the variations in parents' first reactions to having a disabled child may very well be directly linked to differences in the type of impairment that involve very different challenges to the parents. It is not only about the baby failing to live up to the picture of normal children, some differences being easier to live with than other. This is not to say the authors do not discuss useful aspects of diagnosis. The necessity of medical diagnosis in order to get access to public services is well addressed.
Being engaged in arguing for more acceptance of diversity without the need of a medi cal diagnosis, I think it is a challenge to most of us that there are, for instance, some sorts of behaviour we normally do not want to accept, as it represents a threat to ourselves and others, like children that are acting ‘naughty’ or even violent. Here, knowledge of the implications of a particular impairment may be necessary in order to accept the child as it is. The authors return to this dilemma in the final chapter. Here, they emphasize the problem of rejecting the labelling: ‘The apparently only other social option – for their disability not to be labelled – does not necessarily put them in a better position, as it leads to them being labelled in other ways: as naughty children with parents who cannot cope, or as welfare dependent who are claiming resources they have no right to’ (192). This is a dilemma that families and children constantly have to balance.
Finally, from a Scandinavian point of view, I found it interesting to trace the similarities in parental experiences from Great Britain to a Scandinavian context. Families in these countries are met with similar politics, ideologies and expectations, which mean the important insights from this book has relevance across countries and different welfare regimes. This book is both important as a contribution to the debate on disability, feminism and caring among disability scholars, as well as for different groups of professionals.
NTNU Social Research, Trondheim, Norway
© 2010, Hege Lundeby