Families Raising Disabled Children: Enabling Care and Social Justice PDF
Preview Families Raising Disabled Children: Enabling Care and Social Justice
Families Raising Disabled Children Enabling Care and Social Justice Janice McLaughlin, Dan Goodley, Emma Clavering and Pamela Fisher Families Raising Disabled Children Also by Dan Goodley SELF-ADVOCACY IN THE LIVES OF PEOPLE WITH LEARNING DIFFICULTIES: The Politics of Resilience RESEARCHING LIFE STORIES: Method, Theory and Analyses in a Biographical Age (with R. Lawthom, P. Clough and M. Moore) ARTS AGAINST DISABILITY: The Performing Arts of People with Learning Difficulties (with M. Moore) DISABILITY AND PSYCHOLOGY: Critical Introductions and Reflections (co-editor with R. Lawthom) ANOTHER DISABILITY STUDIES READER: Including People with Learning Difficulties (co-editor with G. Van Hove) Also by Janice McLaughlin FEMINIST SOCIAL AND POLITICAL THEORY: Contemporary Debates and Dialogues VALUING TECHNOLOGY: Organisations, Culture and Change (with P. Rosen, D. Skinner, A.Webster) INTERSECTIONS IN FEMINIST AND QUEER THEORY (co-editor with D. Richardsonand M. E. Casey) Families Raising Disabled Children Enabling Care and Social Justice Janice McLaughlin Newcastle University Dan Goodley Manchester Metropolitan University Emma Clavering Newcastle University Pamela Fisher University of Huddersfield © J.McLaughlin,D.Goodley,E.Clavering,P.Fisher 2008 Softcover reprint of the hardcover 1st edition 2008 978-0-230-55145-9 All rights reserved.No reproduction,copy or transmission of this publication may be made without written permission. No portion of this publication may be reproduced,copied or transmitted save with written permission or in accordance with the provisions of the Copyright,Designs and Patents Act 1988,or under the terms of any licence permitting limited copying issued by the Copyright Licensing Agency, Saffron House,6-10 Kirby Street,London EC1N 8TS. Any person who does any unauthorized act in relation to this publication may be liable to criminal prosecution and civil claims for damages. The authors have asserted their rights to be identified as the authors of this work in accordance with the Copyright,Designs and Patents Act 1988. First published 2008 by PALGRAVE MACMILLAN Palgrave Macmillan in the UK is an imprint of Macmillan Publishers Limited,registered in England,company number 785998,of Houndmills, Basingstoke,Hampshire RG21 6XS. Palgrave Macmillan in the US is a division of St Martin’s Press LLC, 175 Fifth Avenue,New York,NY 10010. Palgrave Macmillan is the global academic imprint of the above companies and has companies and representatives throughout the world. Palgrave® and Macmillan® are registered trademarks in the United States, the United Kingdom,Europe and other countries. ISBN 978-349-36228 - 8 ISBN 978-0-230-58351-1 (eBook) DOI 10.1057/9780230583511 This book is printed on paper suitable for recycling and made from fully managed and sustained forest sources.Logging,pulping and manufacturing processes are expected to conform to the environmental regulations of the country of origin. A catalogue record for this book is available from the British Library. A catalog record for this book is available from the Library of Congress. 10 9 8 7 6 5 4 3 2 1 17 16 15 14 13 12 11 10 09 08 Contents List of Tables vi Preface vii Acknowledgements xiii 1 Theorising Parents, Professionals and Disabled Babies 1 Dan Goodley and Janice McLaughlin 2 Methodology 21 Dan Goodley, Janice McLaughlin, Emma Clavering and Pamela Fisher 3 Research Encounters 36 Dan Goodley, Janice McLaughlin, Emma Clavering and Pamela Fisher 4 Unmaking Children 53 Janice McLaughlin and Dan Goodley 5 Productive Parental Alliances 78 Dan Goodley and Janice McLaughlin 6 Community Practices 105 Dan Goodley and Janice McLaughlin 7 Professional, Institutional and Ethical Practices 135 Janice McLaughlin and Dan Goodley 8 The Gender Dynamics, Transformative Potential and Boundaries of Care 160 Janice McLaughlin and Dan Goodley 9 Values of Enabling Care and Social Justice 183 Janice McLaughlin and Dan Goodley References 199 Index 226 v Tables Table 2.1 Fieldwork Summary 22 Table 2.2 Summary of Observational Settings 30 Table 5.1 Governing the Parent: Nine Pen Portraits 92 vi Preface Aims of the book This book explores the lived realities of parents of disabled children. The book emerges from an Economic and Social Research Council (ESRC) funded project ‘Parents, Professionals and Babies with Special Care Needs: Identifying Enabling Care’ (RES-000–23–0129). This project had three key objectives: 1. To identify enabling principles of post-natal and subsequent care pri- marily from the perspectives of parents of disabled babies alongside a consideration of professional perspectives; 2. To critically examine interactions between parents and professionals in terms of the ways in which parents are empowered to take an active and enabling role in the care of their children; 3. To investigate how meanings of ‘impairment’ and ‘dis/ability’ are negotiated/constructed and consider how these meanings impact upon the provision of care, perceptions of the disabled baby and the resultant understandings of ‘good’ parenting and professional practice. These objectives were tackled through the following aims of our empir- ical work: • To engage with the retrospective narrative accounts of parents of young disabled children about their experiences of services, profession- als and the related interventions during post- (and ante-) natal care; • To investigate health professionals’ views of the key strategies neces- sary for different services to provide enabling care and support as the baby develops into infancy and early childhood; • To trace the experiences of care received and provided by parents of disabled babies over a period of 18 months through the use of narra- tive interviews; • To explore the interactions between parents and a variety of profes- sionals in negotiating the care of the disabled baby and notions of impairment and disability; • To examine the wider support networks inhabited by parents of dis- abled babies. vii viii Preface Researching social lives alongside policy Our research placed particular emphasis on the expectations, roles and rules governing the lifeworlds of families and professionals. The research project took place between 2003 and 2007 in two sites in England. This was a particularly turbulent time for parents, children and practitioners as a raft of new policies and legislation impinged upon health and social care services (e.g. Special Educational Needs Code of Practice, 2001; Every Child Matters, 2003; ‘Together from the Start’–Practical Guidance for Professionals working with Disabled Children (Birth to Third Birthday) and their Families, 2003; The Children Act 2004; The National Service Framework for Children, Young People and Maternity Services, 2004). The National Service Framework, for example, states a clear con- viction: ‘At its heart is a fundamental change in thinking about health and social care services. It is intended to lead to a cultural shift, resulting in services being designed and delivered around the needs of children and families’ (DOH 2004: p. 8). It outlines the national standards for chil- dren’s health and social care across the National Health Service (NHS), identifying ‘best practice’ from across England and Wales; with the aim of generating high-quality services regardless of location (Mallett, 2006). The standards target promoting social inclusion, healthy child devel- opment, supporting parents, strengthening families, improving partici- pation in community life and increasing parental voices in service planning and provision. The National Service Framework is situated within Every Child Matters (ECM) (Department for Education and Skills, 2003, 2004a, b). ECM advocates mainstream and coordinated service delivery for children’s services and early intervention. A core develop- ment within this is the creation of Children’s Trusts, which will ‘have a key role to play in co-ordinating and integrating the planning, commis- sioning and delivery of social, health, social care and education services’ (DOH 2004: p. 10). Children’s Trusts, backed up by the Children Act (2004), the Health and Social Care Act (2001) and the Health Act (1999), provide a framework for professionals across health and social care to work together via processes that allow for both multiagency and multi- disciplinary partnerships. It also allows for joint commissioning and planning of services across health and social care, including the creation of joint budgets. The Acts make it a statutory requirement for local authorities to create joint mechanisms for working and managing the needs of children. Our work with parents and professionals has not been geared towards evaluating the progress and success of the government initiatives laid Preface ix out above (see Mallett, 2006, for a detailed overview). Indeed, our research was taking place just as new initiatives such as Children’s Trusts were being set up. Our concern, then, was not with an appraisal of policy. Other work is doing this and has raised concerns about the direc- tion of cultural change (Williams, 2004); limits to financial resources from central government (Audit Commission, 2002; Education and Skills Select Committee, 2005); the level of training provided for profes- sionals working with disabled children and their families (Parliamentary Hearings on Services for Disabled Children, 2006); and the lack of participation from parents and children in their development (Every Disabled Child Matters (EDCM), 2006; Parliamentary Hearings on Services for Disabled Children, 2006). Our research, instead, aimed to work closely alongside parents, their perspectives and their dealings with professionals, institutions and communities. This book acknowledges the importance of policy, guidance and legislation to families but moves beyond this to explore actualities and intersections. Researching social lives alongside parents In this book we have been drawn to theoretical ideas that neither portray parents as cultural dopes nor overemphasise their choices as agentsunconstrained by social pressures. We recognise that parents are active in the creation of their identities and roles associated with the care of their disabled children. Parents are also very much aware of expectations and regulations placed upon them. We know that parent- ing a disabledchild can be a very positive experience (Beresford, 1994). However, any analysis of parental identities should, by necessity, be considered in relation to wider social, cultural, political and historical factors. Sometimes our discussion will refer to mothers rather than par- ents. While fathers do, undoubtedly, contribute to care enacted in the home (Carpenter, 2002), mothers of disabled children are often the key players (Willoughby and Glidden, 1995). Hence, while the politics of disability are illuminated by any discussion of care and the social world, so too are feminist sensibilities of the relationship between mothers and caring practices. We do not use parents and mothers interchange- ably. We do consider how mothers are positioned as key players in care. When we refer to mothers we aim to shine some light on the complex social and political systems that underpin the intersections of patriarchy, the welfare state, disablement and institutional construc- tions of family. Russell (2003) argues that it is important to access par- ents’ expectations rather than simply their needs. Consequently, the
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