Working with Families for Inclusive Education

ISBN: 978-1-78714-261-9, eISBN: 978-1-78714-260-2

ISSN: 1479-3636

Publication date: 13 May 2017


(2017), "Prelims", Working with Families for Inclusive Education (International Perspectives on Inclusive Education, Vol. 10), Emerald Publishing Limited, Leeds, pp. i-xv.



Emerald Publishing Limited

Copyright © 2017 Emerald Publishing Limited

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International Perspectives on Inclusive Education

Series Editor: Chris Forlin

Recent Volumes:

Volume 1: Emotional and Behavioural Difficulties in Mainstream Schools – Edited by John Visser, Harry Daniels and Ted Cole
Volume 2: Transforming Troubled Lives: Strategies and Interventions for Children with Social, Emotional and Behavioural Difficulties – Edited by John Visser, Harry Daniels and Ted Cole
Volume 3: Measuring Inclusive Education – Edited by Chris Forlin and Tim Loreman
Volume 4: Working with Teaching Assistants and other Support Staff for Inclusive Education – Edited by Dianne Chambers
Volume 5: Including Learners with Low-Incidence Disabilities – Edited by Elizabeth A. West
Volume 6: Foundations of Inclusive Education Research – Edited by Phyllis Jones and Scot Danforth
Volume 7: Inclusive Pedagogy Across the Curriculum – Edited by Joanne Deppeler, Tim Loreman, Ron Smith and Lani Florian
Volume 8: Implementing Inclusive Education: Issues in Bridging the Policy-Practice Gap – Edited by Amanda Watkins and Cor Meijer
Volume 9: Ethics, Equity, and Inclusive Education – Edited by Agnes Gajewski

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University of Alberta, Edmonton, Canada

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A catalogue record for this book is available from the British Library

ISBN: 978-1-78714-261-9 (Print)

ISBN: 978-1-78714-260-2 (Online)

ISBN: 978-1-78743-027-3 (Epub)

ISSN: 1479-3636 (Series)

List of Contributors

Keith W. Allred Boise State University, Boise, ID, USA
Emma Barrett Department of Education, Perth, Australia
Shawn C. Bingham University of South Florida, Tampa, FL, USA
Ilaria Di Maggio University of Padova, Padova, Italy
Maria Cristina Ginevra University of Milano-Bicocca, Milan, Italy
Sara E. Green University of South Florida, Tampa, FL, USA
Juho Honkasilta University of Jyväskylä, Jyväskylä, Finland
Heidi L. Janz University of Alberta, Edmonton, Canada
Jennifer Katz University of British Columbia, Vancouver, Canada
Norm Kunc Broadreach Training & Resources, New Westminster, Canada
David McConnell University of Alberta, Edmonton, Canada
Sivendra Michael British Council, Suva, Fiji Islands
Vanessa Morelli Ball State University, Muncie, IN, USA
Laura Nota University of Padova, Padua, Italy
Maria Pacino Azusa Pacific University, Azusa, CA, USA
Amber Savage University of Alberta, Edmonton, Canada
Kate Scorgie San Diego, CA, USA
Umesh Sharma Monash University, Melbourne, Australia
Marion Shields Avondale College of Higher Education, Wahroonga, Australia
Dick Sobsey University of Alberta, Edmonton, Canada
Salvatore Soresi University of Padova, Padova, Italy
Bruce Uditsky Inclusion Alberta, Edmonton, Canada;University of Calgary, Calgary, Canada
Emma Van der Klift Broadreach Training & Resources, New Westminster, Canada
Susan R. Warren Azusa Pacific University, Azusa, CA, USA
Gregor Wolbring University of Calgary, Calgary, Canada

Series Editor’s Introduction

The adoption internationally of inclusive practice as the most equitable and all-encompassing approach to education and its relation to compliance with various international declarations and conventions underpins the importance of this series for people working at all levels of education and schooling in both the developed and developing worlds. There is little doubt that inclusive education is complex and diverse and that there are enormous disparities in understanding and application at both inter- and intra-country levels. A broad perspective on inclusive education throughout this series is taken, encompassing a wide range of contemporary viewpoints, ideas, and research for enabling the development of more inclusive schools, education systems, and communities.

Volumes in this series on International Perspectives on Inclusive Education contribute to the academic and professional discourse by providing a collection of philosophies and practices that can be reviewed in light of local contextual and cultural situations in order to assist educators, peripatetic staffs, and other professionals to provide the best education for all children. Each volume in the series focuses on a key aspect of inclusive education and provides critical chapters by contributing leaders in the field who discuss theoretical positions, empirical findings, and impacts on school and classroom practice. Different volumes address issues relating to the diversity of student need within heterogeneous classrooms and the preparation of teachers and other staffs to work in inclusive schools. Systemic changes and practice in schools encompass a wide perspective of learners in order to provide ideas on reframing education so as to ensure that it is inclusive of all. Evidence-based research practices underpin a plethora of suggestions for decision-makers and practitioners; incorporating current ways of thinking about and implementing inclusive education.

While many barriers have been identified that may potentially inhibit the implementation of effective inclusive practices, this series intends to identify such key concerns and offer practical and best practice approaches to overcoming them. Adopting a thematic approach for each volume, readers will be able to quickly locate a collection of research and practice related to a particular topic of interest. By transforming schools into inclusive communities of practice all children should have the opportunity to access and participate in quality education in order to obtain the skills to become contributory global citizens. This series, therefore, is highly recommended to support education decision-makers, practitioners, researchers, and academics, who have a professional interest in the inclusion of children and youth who are marginalizing in inclusive schools and classrooms.

This volume brings a wonderful mix of perspectives. Professionals spend considerable time talking about, identifying and making decisions about and for people with disabilities. Similarly, academics research and write about the perceptions, feelings and challenges of people with disabilities. Yet there is so little information written by people with disabilities themselves in an advocacy role or their families and almost never is this all presented together with a sense of true partnership between all three groups. This volume is very refreshing as it combines in one book a set of chapters by individuals with disabilities and their family members, alongside those of professionals and scholars. By acknowledging that all three groups bring a shared understanding to the journey undertaken when a child experiences a disability, the ideology of an inclusive approach to providing support is demonstrated in practice. The sensitive approach taken by the editors and their combined experiences in working with all three groups, has enabled them to bring together a book that provides incredible insight into the total inclusive journey for all three groups. It is clear that all perspectives are equally valued. The argument proposed by Kate and Dick towards the finding of identity, opportunity and belonging underpins both the perspective pieces and the academic chapters. This is a book that is not to be missed and should be on the shelf of everyone involved with inclusive education.

Chris Forlin

Series Editor

Volume Editors’ Introduction

Fashioning an edited volume is, indeed, a journey. There are a number of ways one can go about it. One is to create a structure of topics around a subject area and invite experts to share their insights, each addressing a particular topic. Another is to approach those who have experience and expertise within the broader area of study and allow them to choose what they wish to contribute, thus shaping the volume. We decided to take this somewhat more adventurous route. Because this volume focuses on inclusion, families, and education, we have invited individuals with disabilities and family members to contribute their perspectives along with those of professionals and scholars.

First and foremost, we wanted to give voice to persons with disabilities to reflect on how schools, communities and vocations have shaped them as individuals, and how they in turn have challenged and informed ways of thinking regarding disability and inclusion. Next, we wanted to explore the insights and experiences of family members, including the often overlooked perspectives of fathers and siblings. Finally, we sought to tap into innovative evidence-based strategies and insights from professionals and educators who have been working in various settings and at a range of grade levels to foster collaborative home-school partnerships.

What emerged was a kaleidoscope of topics and perspectives, far richer than what we initially planned or envisioned. Each chapter deepened our own understanding of the journey of inclusion, coalescing around three unique yet intertwined themes: identity, opportunity and belonging – which became the subtitle of the volume. As we explored the various chapters, we posed questions such as: what do parents and family members most want for their children with unique learning strengths and needs? what do they feel their children most need both in school and throughout their lives?, what do they most desire in their interactions with professionals? Time and again we observed that parents want their children to fashion an authentic identity, to discover and value who they truly are; to have opportunity to craft a self-determined meaningful life based on interests, preferences and strengths; and to experience belonging in their local communities and in society in general. The truth is that this is what all parents wish for their children. Nevertheless, navigating identity, opportunity, and belonging is often a more challenging journey for individuals with disability and their families. What might be suggested is that the first two – identity and opportunity – seem to occur most fully within, and perhaps even require, an environment of belonging.

The concept of belonging that emerges from the studies and reflections contained in this volume is, first and foremost, not about space; it’s, rather, about place – a place where all can enter, with assurance that they are welcomed and valued. Belonging is not about trying to “fit” someone into a system that is designed by and for others. It is about co-creating communities where all can enter as equals. Belonging implies a place where each individual can begin to discover who he or she really is, not who others or the system want them to be. Thus, belonging invites freedom in which to explore identity – one’s strengths, interests, preferences, and goals – within an environment of support, acceptance, and validation. Belonging also invites opportunity – to imagine possibilities, to create and co-create meaningful, self-determined futures.

Perhaps it is belonging that best differentiates the concept of inclusion from integration. Integration implies combining two separate categories together. Integration only becomes inclusion when we begin to lose our sense of separate categories and see all of the individuals as belonging to a single group. It does not require the abandonment of the recognition of, or the denial of, individual differences, but does minimize or eliminate sharply defined categories. Each group member belongs equally to the group.

Contemporary inclusive education remains a work in progress. In a few places, it has become accepted as the norm. In many, it is still seen as an innovation, trend, or social experiment. In some, it remains non-existent. Under these latter conditions, a sense of belonging may be difficult to experience.

Achieving belonging may require courage if we have been accustomed to conceptualizing categorical differences. One needs to move beyond one’s comfort zone, to be open to new understandings, to redefine our own identities as well as the identities of others. But belonging also confers courage – to imagine who we can become, individually as well as collectively, and how we all might be enriched through journeying together.

This volume explores working with families to secure identity, opportunity and belonging within school settings and beyond. It does so by means of a blend of scholarly articles and personal reflections. The first section examines personal, family, and theoretical perspectives on ways in which existing systems and structures define and influence inclusion of persons with disability and their families in school and workplace settings. It invites reflection on how we might come together to create more inclusive communities through mutual understanding and valuing. Section two presents a number of evidence-based practices, strategies, and resources that can serve to guide family members and professionals as they work together to build collaborative partnerships and inclusive school communities from preschool through transition to post-secondary and vocational settings.

This volume has taken us on a journey. It has invited us to deeper understandings of collaboration, to engage reflection from diverse perspectives. And it has reminded us that at some level we are all navigating identity, opportunity and belonging; that each of us needs those who challenge us to see beyond our assumptions, whose ideas shape and sharpen our own. We acknowledge the many scholars, parents, professionals, writers and educators who have played that role, and continue to play that role in our own journeys. We value those who have diligently advocated for the rights of persons with disabilities to find their place in society. These are the true warriors. On a personal note, I, Kate, would like to acknowledge the formative writing and work of Jean Vanier, for thought-provoking insights on belonging, and Henri Nouwen, and the University of Alberta for generous offering of academic resources to alumni. Along those lines, I, Dick, would add Tanis Doe and Robert Perske, among others who have shaped my own thinking on inclusion, along with several of the authors included in this volume. Finally, we both join in our desire to acknowledge the life and work of Dr. Lorraine Wilgosh – scholar, mentor, teacher, advocate, and friend. We offer this volume in her memory and to recognize the place she occupied in our lives and in the lives of so many others. She vibrantly lived into the journey that we are called to continue – of securing identity, opportunity and belonging for all.

Kate Scorgie

Dick Sobsey


Section I Personal and Family Perspectives on Inclusion: Navigating Identity, Opportunity, and Belonging
Ability and Opportunity in the Rearview Mirror
“I Could have so Easily been Excluded”: Exploring Narratives of Inclusion and Exclusion in the Lives of Professional Performers with Disabilities
A Game of Give and Take: My Journey Through Special Education and Inclusion
The Ecocultural Project of Family Life
The Gift of Belonging: From Parents to Society
Parental Perspective about Inclusive Education in the Pacific
An Emancipatory Stance Regarding Fathers of Children with Disabilities
Broadening Family Perspectives: The Experiences of Fathers and Siblings When a Child Has Chronic Illness or Disability
My Special Sister
Section II Fostering Collaborative Partnerships for Inclusion: Frameworks and Strategies
“Diagnosing” the Need or in “Need” of a Diagnosis? Reconceptualizing Educational Need
Father and Son
Hidden Voices: Parents’ Perspectives on the Barriers to and Facilitators of Inclusion on Their Preschool Children with Disabilities
40 Years of Inclusive Education Advocacy: A Personal Perspective
Toward a Vision of Inclusive Learning Communities: It Takes the Village
Rethinking Individual Education Plans: Searching for a Better Way
Engaging Parent Strengths for Inclusion: The Power of Optimism, Hope, and Courage
Being a Parent and a Teacher: Personal Reflections
Transition Post-School: Five Steps Toward Reducing the Hurdles
So You Think We Can Trust? (Re)building Home-School Collaboration with Families of Children with Disability
About the Authors