Education and Disability in the Global South: New Perspectives from Africa and Asia 9781474291200, 9781474291231, 9781474291224

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Education and Disability in the Global South

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Education and Disability in the Global South New Perspectives from Africa and Asia Edited by Nidhi Singal, Paul Lynch and Shruti Taneja Johansson

BLOOMSBURY ACADEMIC Bloomsbury Publishing Plc 50 Bedford Square, London, WC1B 3DP, UK 1385 Broadway, New York, NY 10018, USA BLOOMSBURY, BLOOMSBURY ACADEMIC and the Diana logo are trademarks of Bloomsbury Publishing Plc First published in Great Britain 2019 Papberback edition first published 2020 Copyright © Nidhi Singal, Paul Lynch, Shruti Taneja Johansson and Contributors, 2019 Nidhi Singal, Paul Lynch, Shruti Taneja Johansson and Contributors have asserted their right under the Copyright, Designs and Patents Act, 1988, to be identified as Authors of this work. All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or any information storage or retrieval system, without prior permission in writing from the publishers. Bloomsbury Publishing Plc does not have any control over, or responsibility for, any third-party websites referred to or in this book. All internet addresses given in this book were correct at the time of going to press. The author and publisher regret any inconvenience caused if addresses have changed or sites have ceased to exist, but can accept no responsibility for any such changes. 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. ISBN: HB: 978-1-4742-9120-0 PB: 978-1-3501-7052-0 ePDF: 978-1-4742-9122-4 eBook: 978-1-4742-9121-7 Typeset by Integra Software Services Pvt. Ltd. To find out more about our authors and books visit www.bloomsbury.com and sign up for our newsletters.

Contents List of Figures Notes on Contributors Foreword 1

Education of Children with Disabilities: Changing Landscape of New Opportunities and Challenges Nidhi Singal, Shruti Taneja Johansson and Paul Lynch

Part One Framing the Debates 2 3 4

Looking to the Future: Including Children with Disabilities in the Education Sustainable Development Goal Pauline Rose Researching Disability and Education: Rigour, Respect and Responsibility Nidhi Singal What Gets Measured Gets Done: Collecting Data to Support Inclusive Education for Children with Disabilities Islay Mactaggart and Hannah Kuper

Part Two Situated Perspectives

vii viii xiii

1 19

21 41

59 87

Applying Conceptual Approaches 5 6 7

Advancing a Comparative Case Study Approach towards Education and Disability Research: An Example from Bhutan Matthew J. Schuelka Diversifying Theoretical Commitments for a Transnational Inclusive Education: Lessons from India Srikala Naraian Participation of Students with Disabilities in South African Higher Education: Contesting the Uncontested Colleen Howell

89 107 127

Schooling and Teachers 8 9

Reframing ‘Spaces’ for Educating Children with Autism: Perspectives from Urban India Shruti Taneja Johansson The Application of Inclusive Principles and Practice in Schools in South India: Successes and Challenges Richard Rose and Jayashree Rajanahally

145 165

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10 The Practice Architectures of Inclusive Education in Two African Contexts Anbanithi Muthukrishna 11 How Prepared Are Teachers to Deliver Inclusive Education: Evidence from Kenya, Zimbabwe and Sierra Leone Maria Kett, Marcella Deluca and Mark T. Carew

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Child, Family and Community 12 Exploring Ways to Support the Infrastructure for Early Childhood Development: A Study of Children with Visual Impairment in Malawi Paul Lynch and Melissa Gladstone 13 Inclusive Education for Learners with Albinism: Malawi, Zambia and Botswana Gareth Dart, Yonah Matemba and Jack Gunnell 14 Listening to Children with Disabilities: Voices from Uganda and Malawi Mary Wickenden 15 Mothers as Educational Enablers: Examining the Journeys of Young Women with Disabilities in Pakistan Tehmina Hammad

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245 267 289

16 Conclusion Paul Lynch, Shruti Taneja Johansson and Nidhi Singal

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Index

313

List of Figures 4.1 ICF framework of disability 12.1 Diagram showing levels at which there is reciprocal interaction between the developing child and the persons, activities and the environment 12.2 An example of communication and play activities for carers to try with their children from birth to three months based on UNICEF/WHO Care for Child Development 15.1 The capability framework for education (Hammad & Singal, 2015a, 2015b)

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238 293

Notes on Contributors Dr Mark T. Carew is a Social Psychologist, and his research interests encompass the numerous barriers that people with disabilities face around the world (e.g. education, social participation, access to healthcare, poverty), including in low- and middleincome countries. He is currently Research Fellow at the Leonard Cheshire Disability and Inclusive Development Centre based at University College London. Dr Gareth Dart is Senior Lecturer at the University of Worcester, UK. He has specific interests in teacher education and special and inclusive education in the contexts of resource-poor countries, particularly in Southern Africa. Gareth started his professional career in supported housing for young people in the UK and the United States and quickly became interested in the ways that the service users learned various skills as well as the reasons as to why many had had poor educational opportunities. He moved into further education, first in a residential college run by MENCAP and then as an access course leader in a mainstream college. He spent eight years involved in developing and running teacher education courses in Botswana, focusing on special and inclusive education. He continues his involvement in education projects in Southern Africa, such as Teacher Education in Sub-Saharan Africa (TESSA), and the experiences of learners with albinism. Dr Marcella Deluca is Senior Research Fellow at the Leonard Cheshire Disability and Inclusive Development Centre, Department of Epidemiology and Public Health, University College London. As a social scientist, Marcella has two decades of experience in evidence-based analysis for policymaking and guidance. Her area of expertise is in the field of comparative education policy and practice. Specifically, her work focuses on inclusive education, applied research in disability and international development, and measures to alleviate social exclusion. Dr Melissa Gladstone is Senior Clinical Lecturer in Neurodevelopmental Paediatrics and International Child Health at the University of Liverpool. Her main research interest is in the assessment and provision of support for children with neurodevelopmental and neurobehavioural outcomes in children in low-income and cross-cultural settings globally. She has undertaken and is presently undertaking large field studies in a number of African and Asian settings and is interested to pursue the linkages between assessment of children’s development and interventions which can be provided in community settings. She created a neurodevelopmental assessment tool, the MDAT (Malawi Development Assessment Tool), which is being utilized in over ten countries in Africa for research and programmatic work. She is particularly interested in the creation of culturally relevant outcome tools which can measure both behaviour and

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child development across settings and which can demonstrate good predictive validity for later neuropsychiatric outcomes in children. Jack Gunnell graduated from the University of Worcester with a first-class honours degree in education studies. His independent study entitled ‘What are the most significant factors affecting the education of refugee children in the UK?’ won the Northams Prize for Best Independent Study. He was also awarded a Vacation Research Scholarship from the university and used it to examine policy on staff deployment for inclusive practice in various Anglophone countries and sub-Sahara African countries. Jack is currently pursuing a master’s in educational research at the University of Bristol. His research interests include refugee and inclusive education. Dr Tehmina Hammad possesses over twelve years’ work experience in the development sector in Pakistan, working for the Aga Khan Rural Support Programme in Gilgit and leading on various evaluation research projects at the Population Council, Islamabad. More recently, she has worked in the voluntary and public (health and higher education) sectors in the UK. She is currently working on the Migration and Youth in UK Cities project at the Faculty of Education, University of Cambridge. Her research interests are in education, diversity and development. Dr Colleen Howell has been extensively involved over the last twenty years in education research and policy work in South Africa. Her work has been particularly focused on issues of equity and diversity in education, and the building of inclusive education and training systems. She has lectured and published on these issues and contributed to a number of national policy initiatives in South Africa. Between 1998 and 2014, she worked at the University of the Western Cape in Cape Town, initially as a researcher in the Centre for the Study of Higher Education and then as the Director: Institutional Research in the Institutional Planning Division. She has recently joined the staff of the Centre for International Education and Development at the Institute of Education, University College London, where she is working as a research associate on a project on higher education and the public good in four African countries. Dr Maria Kett is Head of Research at the Leonard Cheshire Disability and Inclusive Development Centre and Honorary Reader in Disability and Development at UCL’s Institute of Epidemiology and Health Care. She has extensive experience of applied anthropology in disability and international development with a particular interest in health, education, human rights, poverty alleviation and the consequences of social exclusion. Professor Hannah Kuper is Director of the International Centre for Evidence in Disability (ICED), a research group at LSHTM that works to expand the research and teaching activities of LSHTM in the field of global disability. She is an epidemiologist by training. The focus of her research is on disability in low- and middle-income countries, in particular measurement of disability and the health and rehabilitation needs of people with disabilities.

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Dr Paul Lynch is Senior Lecturer in the Department of Disability, Inclusion and Special Needs, School of Education, University of Birmingham. He is a member of the Vision Impairment Centre for Teaching and Research (VICTAR). Paul conducted commissioned research for Sightsavers from 2006 to 2012, and he continues to provide technical advice on education and early childhood projects for Sightsavers in sub-Saharan Africa. His research interests lie in early childhood development and disability, and he has won awards from the UK Research Council and the Department of International Development to conduct studies into early years of development and ‘school readiness’ in Malawi. Dr Islay Mactaggart is Research Fellow in Disability and Global Health at the International Centre for Evidence in Disability (ICED) and the International Centre for Eye Health (ICEH) at LSHTM. Islay specializes in disability and impairment measurement in population-based surveys. Dr Yonah Matemba is a Malawian native and currently Senior Lecturer in the School of Education, University of the West of Scotland, UK, where he is also the subject specialist for religious education, programme leader, MSc mental health and education, and Postgraduate Research Coordinator for PhD programmes. He is a fellow of the UK’s Higher Education Academy and has authored books (2), book chapters (5), book reviews (5) and peer-reviewed journal articles (23). His most recent articles have appeared in Journal of Moral Education (2010); Arts and Humanities in Higher Education (2011); Compare: A Journal of Comparative and International Education (2013); Journal of Beliefs and Values (2013); History of Education (2014); Religious Education Journal of Australia (2013; 2014); Religious Education (2005; 2015); Diaspora, Indigenous and Minority Education (2015); Howard Journal of Crime and Justice (2016); and British Journal of Religious Education (2009; 2014; 2017). Professor Anbanithi Muthukrishna is Professor Emeritus at University of KwaZuluNatal. She has over thirty years of experience in teaching, research and being involved in policy development in South Africa. Her research interests include a focus on social justice, inclusion and diversity in education. She is a well-renowned educational consultant who has contributed to debates on inclusive education both nationally and internationally. She has published widely in international peer-reviewed journals and contributed to a large body of scholarly work. Dr Srikala Naraian is Associate Professor in the Department of Curriculum and Teaching at Teachers College, Columbia University, and Program Director of the Elementary and Secondary Inclusive Education Programs. She locates herself in the disability studies tradition and investigates processes of inclusive education, teacher preparation for inclusive education and the education of students with significant disabilities. Dr Naraian has offered professional development to teachers in New York City schools on inclusive practices and has prepared teachers for inclusive education in international contexts, particularly in Iceland, Germany and India. She is currently working collaboratively with a non-profit agency in New York City, Parents for Inclusive

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Education, to document the initiatives taken by school leaders within New York City schools towards inclusion. She has published widely in many journals including International Journal of Inclusive Education, Teachers College Record, Anthropology and Education Quarterly, Curriculum Inquiry and Teacher Education and Special Education. Jayashree Rajanahally is Special Educator and Psychologist working presently with the Brindavan Education Trust, an NGO in Bangalore, and part time on the MA in special and inclusive education offered by the University of Northampton UK in Bangalore. She has been working in the field of special education for the past eighteen years and is a coordinator of the After School Remedial Centre of Brindavan and of the teacher training programme offered at the same institution. Drawing upon her work with children, parents and teachers for the promotion of inclusive education, she has presented papers at various national and international conferences. She is presently part of the team working on the Brindavan journal which is focused on practitioner’s research. Professor Pauline Rose joined Cambridge University in February 2014 as Professor of International Education, where she is Director of the Research for Equitable Access and Learning (REAL) Centre in the Faculty of Education. She is also Senior Research Fellow at the UK Department for International Development. Prior to joining Cambridge, Pauline was Director of the EFA Global Monitoring Report (from August 2011) during which time she directed two reports on youth, skills and work, and on teaching and learning. Before becoming Director, she worked as Senior Policy Analyst with the team for three years, leading the research for three reports on the themes of governance, marginalization and conflict. Pauline is author of numerous publications on issues that examine educational policy and practice, including in relation to inequality, and financing and governance. She has worked on large collaborative research programmes with teams in sub-Saharan Africa and South Asia examining these issues. Professor Richard Rose is Professor of Inclusive Education in the Centre for International Inclusive Education and Pedagogy at the University of Northampton, UK. He has recently held posts as a teacher, head teacher and education inspector in several parts of the UK. In recent years, he has conducted research and consultancy in many parts of the world including Ireland, Malta, Georgia, Armenia, Malaysia, China, Sierra Leone and Hong Kong where he was Visiting Professor at the Institute of Education. His work has been disseminated in a wide range of academic journals and other publications. Richard has worked with colleagues in India since 2000 on the promotion of professional development and research with a focus upon inclusive education. Dr Matthew J. Schuelka is currently Lecturer in Inclusion and Special Educational Needs at the University of Birmingham. He holds advanced degrees in comparative and international education from Stanford and the University of Minnesota. In 2012 and 2013, Dr Schuelka was Head of the Sociology and Political Science department at Royal Thimphu College in Bhutan, while also conducting ethnographic research on children with disabilities in Bhutanese schools. He is active in global research and

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inclusive education development, which includes countries such as Bhutan, India, Malaysia, Japan, Zambia, Serbia, Greenland, the UK and the United States. Dr Nidhi Singal is Reader at the Faculty of Education, University of Cambridge. She has worked extensively with children and young people with disabilities in South Asia and Africa. Her research has examined the educational experiences of children with disabilities, the quality of teaching and learning in mainstream classrooms, and the impact of schooling on different learning outcomes. She was part of the working group tasked with writing the background paper on ‘Towards a disability inclusive education’ for the Oslo Summit on Education for Development. She has worked with various international donor and bilateral agencies and international non-governmental organizations, such as Handicap International and CBM, assisting them in developing research projects, programme evaluation and policy work. She has published widely in international peer-reviewed academic journals and contributed to edited collections, and her work has also been referenced in various international reports. Dr Shruti Taneja Johansson is Senior Lecturer at the Department of Education and Special Education at the University of Gothenburg, Sweden. She holds a PhD in education and has degrees in psychology and the multidisciplinary field of child and childhood studies. Her research is in the area of disability, education and inclusion, ranging from the Swedish context to a wider international perspective. She has a specific interest in perspectives and practices related to inclusive education, and to the education of children with disabilities, with a focus on South Asia. The interaction between culture and autism, more specifically how cultural understandings shape perspectives and practices across settings, is another area of interest. Dr Mary Wickenden is a disability researcher with a particular interest in inclusive and participatory research methodologies and in hearing the voices of children with disabilities and their families, especially those living in the Global South or in disadvantaged contexts. She originally trained as a speech and language therapist in the UK and worked with families with young children with severe disabilities. She subsequently trained in medical anthropology, her PhD focusing on issues around identity and agency for teenagers with severe disabilities and little or no speech. She has worked extensively on disability-related research, intervention and training projects in South Asia and East and Southern Africa. She teaches about disability in global contexts, qualitative methodologies and children and childhoods. She believes strongly in the importance of inclusive approaches to international development and service provision and in the recognition of the equal rights of adults and children with disabilities globally.

Foreword Singal, Lynch and Johansson have assembled a volume that fills a significant void in the literature on disability and education. Attention to this topic in the context of the Global South is urgently needed, particularly in Asia and Africa. The work is framed within the history of ‘international promises’, which have been germane to sustainable development, human rights or inclusion. The data on disability paints a compelling need – 1,000 million people with disabilities – i.e. 15 per cent of the world’s population, the vast majority living in ‘Southern contexts’. In other words, this book interrogates contemporary international promises, particularly for inclusive education, that purportedly respond to the needs of a sizable proportion of the human race. At the same time, the volume engages in new ways enduring tensions and challenges that have permeated inclusion efforts for marginalized groups. In this sense, Singal et al.’s book is concerned with both continuities and transformations in the idea and enactment of inclusive education. For instance, some of the themes addressed in the book reminded me of inclusion challenges I started grappling with several decades ago. I have worked with people with disabilities since the late 1970s. The first ten consecutive years of these experiences took place in Guatemala. The incipient service delivery system for this population was organized around a simple list of benign and paternalistic propositions and values. At the centre of this system was a missionary stance and an ideology of pity that permeated discourses in professional and media circles about children and youth with disabilities. The inclusion movement did not exist yet, and the few available services were offered in segregated special education facilities. The majority of these learners had incredibly rich cultural heritages but were also poor, and many came from indigenous families that spoke Spanish as a second language. Despite the multidimensionality of their identities, popular representations of these individuals and families tended to reduce them to people with ability differences through a deficit trope. Even professionals were compelled to ignore – through the mediating power of their disciplinary lenses – the multiple intersecting identities of these communities and erase the weight of structural influences that shaped the marginalization and oppression of individuals with disabilities. The idea of ‘rights’ was still a nebulous notion for most citizens in this nation, particularly for people with disabilities. Not surprisingly, the nation’s judicial, legislative, social and educational bureaucracies were assembled around single axes of difference and wrapped with historical amnesia about the exclusion of people with disabilities. Therefore, individuals living at the intersections of poverty, gender, language, disability and indigenous status were subjected to multiple forms of violence. Prevalence data on this population was not collected by most sectors. Individuals with disabilities were not only at the very bottom of this brutally stratified system, but they were also invisible. Consistent with what Singal, Lynch and Johansson assert in this volume, I saw thirty-eight years ago that disability was the ‘most powerful dimension of exclusion’. Indeed, exclusion has been a distinctive feature in the history

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of disability (Stiker, 2009). Unfortunately, Singal et al.’s volume documents that these barriers are still present in the lives of this population. I relocated to the United States in the late 1980s and have had many opportunities to continue my work as a researcher and consultant in the United States, Latin America, Europe and Africa. Although the inclusion movement that emerged in the 1990s brought about major shifts in policy and attention to educational opportunity for marginalized groups – including individuals with disabilities – major barriers still hinder meaningful progress. For example, my colleagues and I have consistently observed the same themes of exclusion, invisibility, deficit ideologies and lack of attention to intersectionality across the so-called nations of the North and South. The configuration of these themes varies across national and regional contexts, yet the underlying patterns are similar. We have discerned at least three patterns (Artiles et al., 2011). First, certain groups in every society are represented in distinctively negative ways; people with disabilities tend to be a common target, though other sociocultural markers intersect with disability – e.g. social class, ethnicity, gender, citizenship and language background. Second, historical stratification legacies tend to affect those groups over time, thus compounding their chronic marginalization. And third, there are epistemological blind spots in many disciplines working with these groups that persistently privilege the individual as the unit of analysis at the expense of historical, systemic or situated analyses. The consequence has been the construction of a knowledge base that affords a limited understanding of what Stiker (2009) described as ‘the social and cultural ways of viewing – and of dealing with – what we so imprecisely call disability’ (p. 1, emphasis added). Singal, Lynch and Johansson’s edited volume engages these enduring limitations in the work on/with communities with disabilities. For instance, they reframe this scholarship to account for key values of rigour, respect and responsibility and cover the urgent need to collect data systematically to document the enactment of inclusive education for students with disabilities. This is indeed one of the most compelling voids in this field of study. The editors also broaden the scope of the original reform movement grounded in individual rights so that disabilities are included in international goals for sustainable development and a relational perspective is proposed. The perspectives of students and families are rarely accounted for in this literature, despite the significant roles they can play in advancing inclusive education. My colleagues and I, for instance, documented how families and advocates used their agency in Guatemala to create what we described as ‘spontaneous solutions’ (Caballeros et al., 2016). These were grassroots efforts to solve problems or challenges to inclusion ‘despite’ the government’s investments in educational opportunities. This is an incredibly significant point that shows the power of families’ and communities’ agency to advance the education of their children in the mid of rampant poverty and structural oppression. Contributors to this volume enrich this perspective with chapters on student voice in Africa and Pakistani mothers’ power as educational enablers. Furthermore, the chapters in the book offer critical perspectives on inclusive education that signal areas in urgent need for additional research. To illustrate, the chapters in this volume offer theoretical and methodological refinements in this literature by calling attention to topics such as transnationalism, the spaces of inclusion and comparative analyses. An enduring gap in this literature has been the attention to what happens in educational systems once inclusion policies are adopted, particularly

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in African and Asian nations. In other words, inclusion relied on traditional liberal ideas about educational equity that stress the attainment of access to resources (e.g. education) for marginalized groups, but it has largely ignored what happens after excluded groups pass the promised gates of inclusion. The question has been raised as to whether the global spread of inclusive education merely reflects a superficial transfer of ideas across socio-historical and cultural contexts (Artiles & Kozleski, 2016). Chapters in this volume examine what inclusive education looks like in sub-Saharan Africa and Asian nations (e.g. Bhutan, Pakistan, India). A focus on this dimension of inclusive education can contribute to generate empirical evidence about some of the paradoxes created in the mid of this global movement. For instance, there is evidence that inequities have been created around the globe for certain groups such as immigrants or racial minorities as a consequence of the implementation of inclusive education (Artiles et al., 2011) – e.g. inclusion is used as a tool to segregate particular groups, either from the ordinary school curriculum or from non-disabled peers. These are cases of justice remedies that forge other inequities. Embedded in this paradox are subtle yet critical misconceptions about what counts as inclusive education – a conceptual ambiguity that has been documented across Northern and Southern countries. The infusion of a critical discourse in the examination of a benign concept such as inclusive education is a welcome perspective in this literature and a core strength of this volume. All in all, Singal, Lynch and Johansson’s edited book advances the study of inclusive education by offering a fresh approach to understand the paradoxes of well-intentioned reforms, shedding light on the ambiguities of inclusive education and documenting how the well-established promise of education takes on new meanings and textures across geographical regions. In the end, the core message of the book is a call for situated analyses of inclusion implementation in the neglected contexts of Southern regions. The contributors to this book refine our understanding of what access and participation mean across sites, the difference alternative definitions of inclusion and disability make for the outcomes of educational opportunity, and the role of colonial legacies in the struggles for inclusive systems. Alfredo J. Artiles, Arizona State University

References Artiles, A. J. & Kozleski, E. B. (2016). Inclusive education’s promises and trajectories: Critical notes about future research on a venerable idea. Educational Policy Analysis Archives, 24(43). Available online: http://dx.doi.org/10.14507/epaa.24.1919 Artiles, A. J., Kozleski, E., & Waitoller, F. (Eds.) (2011). Inclusive Education: Examining Equity on Five Continents. Cambridge, MA: Harvard Education Press. Caballeros, M. Z., Artiles, A. J., Canto, H., & Perdomo, C. (2016). Inclusive education in developing countries: Two case studies from Guatemala. In R. Werning, A. J. Artiles, P. Engelbrecht, M. Z. Caballeros, M. Hummel, & A. Rothe (Eds.), Keeping the Promise? Contextualizing Inclusive Education in Developing Countries (pp. 121–150). Bad Heilbrunn: Klinkhardt. Stiker, H. J. (2009). A History of Disability. Ann Arbor, MI: University of Michigan Press.

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Education of Children with Disabilities: Changing Landscape of New Opportunities and Challenges Nidhi Singal (University of Cambridge), Shruti Taneja Johansson (University of Gothenburg) and Paul Lynch (University of Birmingham)

We resolve, between now and 2030, to end poverty and hunger everywhere; to combat inequalities within and among countries; to build peaceful, just and inclusive societies; to protect human rights and promote gender equality and the empowerment of women and girls; and to ensure the lasting protection of the planet and its natural resources. We resolve also to create conditions for sustainable, inclusive and sustained economic growth, shared prosperity and decent work for all, taking into account different levels of national development and capacities. (United Nations, 2015, p. 4)

We live in an age of international promises. The Sustainable Development Goals (SDGs) are an articulation of a global vision for both developed and developing economies for achieving sustainable development in its three dimensions – economic, social and environmental. It is an ambitious plan of action for ‘people, planet and prosperity’ (p. 3). It is a ‘pledge that no one will be left behind’ (p. 4), where there is a recognition that the ‘dignity of the human person is fundamental’ (p. 4) and the ‘endeavour [is] to reach the furthest behind first’ (p. 5). The SDGs with their commitment to ‘leaving no one behind’ are also one of the strongest assertions of support aimed towards the inclusion of persons with disabilities in the global development agenda. Disability is referenced in various parts of the SDGs, specifically in goals related to education, growth and employment, inequality, accessibility of human settlements, as well as data collection and monitoring. This is clearly a welcome step and brings sharply into focus not only the current plight but also the promise of bringing disability into the international development agenda. Similar assertions emphasizing the rights of people with disabilities in development agendas are made in the Convention on the Rights of Persons with Disabilities, UNCRPD (United Nations, 2006). The UNCRPD is the eighth human rights convention enacted

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by the United Nations and the first one specifically directed towards persons with disabilities. It encapsulates both human rights and development (Winzer & Mazurek, 2017), wherein the rights dimension acknowledges the dignity, autonomy and worth of people with disabilities and enhances their visibility; the development aspect distils human rights into a set of plans designed to include person with disabilities in development processes and policies. While the impact of the SDGs on the lives of people with disabilities is yet to be seen, the landscape of disability is fast changing, resulting in new opportunities and challenges, particularly in Southern contexts. There are around 1 billion people with disabilities worldwide (WHO, 2011), that is approximately 15 per cent of the world’s population. Among these, 93 million are children living with moderate or severe disability globally (UNICEF, 2013), of these 80 per cent live in Southern contexts (WHO, 2011). The high rates of developmental delay and disability in children in developing economies are a growing concern. Improved under-five mortality rates globally, better prenatal and antenatal services, and global vaccination programmes against debilitating diseases such as smallpox have contributed to life chances for all children. Rates of survival are increasing as more and more children survive due to better medical interventions and improved medical after-care and community-wide health practices to help prevent disability in children (Margolis et al., 2001). In spite of these changes, one in three children (200 million globally) fails to reach their full physical, cognitive, psychological and/ or socio-emotional potential due to poverty, poor health and nutrition, insufficient care and stimulation, and other risk factors to early childhood development (Black et al., 2016). Rather, there is growing evidence to suggest that the proportion of children with disabilities may be increasing as under-five mortality has fallen in many Southern contexts (Scherzer et al., 2012). Additionally, there are also growing concerns about the impact of mental, neurological and substance use disorders which are affecting every community and age group across the globe. However, at present, we have no clear indication of the exact burden (epidemiology) of neurodevelopmental disorders in low- and middle-income settings as we are not able to clearly identify these disorders well, particularly when children are in the first few years of life (Mwaniki et al., 2012).

Why focus on disability? Given that this book provides a collection of chapters focused on countries in the South, one could argue that an emphasis on disability is rather narrow, particularly given the whole host of other factors which determine the exclusion of individuals from participation in mainstream settings. Here gender, poverty and ethnicity have traditionally been the most well-acknowledged (and researched) markers of exclusion. If the vast number of journal articles and books published in international development on any one of these three factors is a measure of emphasis, then indeed the focus of our book is truly misplaced. However, what we would like to argue here is that of these different factors, the least focused on, disability is the most powerful dimension of exclusion. This is certainly the case in research focusing on education and disability.

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A World Bank Report (2007), analysing data from various states in India, identified disability, rather than gender or poverty, as the most significant reason for children not being in school. Additionally, in an analysis of various national data sets, Filmer (2008) noted that the deficit associated with disability is clearly large compared with other sources of inequality, such as gender, rural residence or economic status. Thus, while disability is not a discrete category, when it intersects with other forms of disadvantage, such as gender, poverty and ethnicity, it results in multiple layers of disadvantages or a magnification of the risk of exclusion. Thus, it is not surprising that in recent years the link between poverty and disability is the most frequently cited in development debates.

Disability, poverty and other intersecting factors There is increasing evidence showing a close link between poverty and disability with bidirectional cause and effect, wherein poverty causes disability and disability causes poverty (Braithwaite & Mont, 2009; Department for International Development, 2000; Eide & Ingstaad, 2013). Poverty may lead to disability through malnutrition, poor health care, and dangerous working or living conditions. Disability may lead to poverty through lost earnings, due to lack of employment or underemployment, and through the additional costs of living with disability, such as extra medical, housing and transport costs (WHO, 2011). People with disabilities are likely to experience multiple levels of poverty, increased care needs and other disability-related costs such as transportation and care support (Mitra et al., 2013; Mont & Nguyen, 2013) as well as lower educational attainment and poorer employment prospects (Groce et al., 2011, Mitra et al., 2013). Eide and Ingstad (2011) successfully capture the nuanced relationship between disability and poverty when they note that ‘the uniqueness of the disability perspective is that it has to do with poverty within poverty’ (p. 13). In countries and areas where people with disabilities are among the most vulnerable, they are often the first to die when sanitary and food conditions become critical, least likely to get care when transportation cannot be paid for, or last to get jobs when employment is scarce. The scenario is further complicated when differing combinations of structural factors (such as caste, gender, religion), life cycle factors (being young or elderly, household composition) and other idiosyncratic factors (ill health, accidents) intersect leading to different life experiences. Studies on women with disabilities in rural areas of many countries in the Asia-Pacific region have found that more than 80 per cent have no independent means of livelihood and are totally dependent on others (UNESCAP, 2003). Similarly, Pal (2010) referring to the Indian contexts discusses how being a Dalit (someone from a lower caste) with a disability results in greater exclusion from mainstream processes.

The promise of education Recent years have seen a significant increase in the focus on education of children and young people with disabilities, particularly in the global South. There is growing realization among the international community that in order to meet the new SDGs, particularly Goal 4, which ‘ensure[s] inclusive and equitable quality education and

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promote lifelong learning opportunities for all’ (United Nations, 2015, p. 19), the inclusion of children with disabilities is vital. While the SDGs have resulted in a renewed focus on children with disabilities, this focus, one could argue, is the culmination of significant developments in the broader education systems and the growing belief in the promise of education. Drawing on research insights from interviews with parents of children with disabilities belonging to poor households in rural India, Singal (2016) notes the naturalness of schooling, which itself took on a more normalizing feature in parental accounts. Parents valued education of their child with disabilities for a range of both short- and long-term reasons and were willing to invest personal time and energy. This focus on education of children with disabilities, one could argue, is the result of a ‘spill over’ effect from a larger discourse around the promise of education as a vehicle for social mobility across the globe, particularly in poverty contexts. De, Khera, Samson and Kumar (2011), taking the example of India, note how education has undergone a significant change since the 1990s. They identify increased awareness of the need for education and a desire for schooling among the poorest communities. Education has become a public issue of concern to voters, and media attention has begun to focus more on what goes on in schools and how the system can be extended and improved. The belief in education as a common good, which can deliver a better quality of life, is evident even among poor families, as clearly noted by Krishna (2004). Most people believe, and research suggests, that education brings an important set of benefits (Colclough, 2012). In more recent years, evidence supporting this to be case for persons with disabilities has also been presented and is discussed below.

Education (or the lack of it) and its impact on individuals’ and national progress As often cited, the value of education is the increased ability to gain employment and earn a better living in the future; this is particularly the case for people with disabilities (UNICEF, 2013). In analysing twelve household surveys from different developing countries, Filmer (2008) found that while there was little evidence to suggest that children with disabilities are more likely to live in poorer households, this was not the case for adults with disabilities. Rather, this association between disability and poverty in adulthood is mediated by lower educational attainment, as each additional year of schooling for people with a disability reduced the probability of being in the two poorest quintiles by 2 to 5 per cent. The fact that more years of schooling increased the probability of employment was also found by Lamichhane and Okubo’s (2014) study on the labour market in Nepal. Conducting their analysis across three disability types (physical, hearing and visual), they noted that the level of education was found to be the most crucial factor in determining participants’ employment status as full-time or part-time workers, significantly more than their age or type of impairment. Years of schooling were also found to be positively associated with better jobs. Their analysis showed that more than fourteen years of schooling increased the possibility of the individual being employed in professional, managerial or administrative work, while those with fewer than ten years of schooling were either unemployed or engaged in manual labour. In another

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chapter, Lamichhane (2015) indicates that educating children with sensory or physical impairments would lead to a 20 per cent wage increase in the context of Nepal. Similar results have been presented by Liao and Zhao (2013) in their research covering parts of rural and urban areas in China. Their calculations suggest that for each additional year of schooling, there is a 5 to 8 per cent wage increase for persons with disabilities. In a study among youth and their families in low-income communities in India and Pakistan, Singal, Bhatti, Janjua and Sood (2012) noted that the young people and their families held strong views around the potential of education to lead to useful incomegenerating activities later in life. A similar view was voiced by youth with disabilities in Ghana, where education was perceived as essential to acquire the skills necessary for employment and an absence of schooling was likely to result in life of begging (Singal et al., 2015). While this belief in educations’ transformative power did not necessarily match the reality faced by these young people, education clearly impacted their aspirations for the future. The lack of education, when linked to an individual’s ability to participate in the labour market, also raises important concerns in relation to the public costs. While the complex relationship between disability and poverty changes based on each country context (Mitra et al., 2011), making factors which contribute to economic losses (or gains) difficult to measure, nevertheless, examples exist which demonstrate significant fiscal losses. These losses arise from the exclusion of people with disabilities from education and the workforce, resulting in the loss of productivity, taxes and a decreased gross domestic product (Myers, Pinnock, & Suresh, 2016; Walton, 2012). In terms of costs to the economy, Morgon Banks and Polack (2014) estimate that in the Philippines exclusion from the workforce for people with unrepaired cleft lips and palates results in a tax revenue loss of approximately 9 million US dollars, while in Bangladesh, the low education of persons with disabilities and their subsequent exclusion from the workforce were estimated to cost 26 million US dollar deficit to the economy. However, viewing the benefits of education merely in terms of future employment, though essential, is limiting. The work with young people with disabilities in India, Pakistan and Ghana significantly forefronted how better education (even when simply seen in terms of more years of schooling) contributed in general to a better life. Young people expressed increased independence, self-sufficiency, self-confidence, and feelings of being more accepted and respected within their communities. In most cases, they also showed greater awareness of their rights and the state benefits available to them (Singal et al., 2015, 2012), thus also becoming more engaged citizens. Thus, not surprisingly, it is strongly argued in the literature that investing in the education of persons with disabilities, through disability inclusive development, is likely to lead to significant economic and other important social outcomes. While most of the discussions have focused on formalized spaces of education, namely formal schooling, it cannot be emphasized enough that learning also happens in many different non-formal and informal spaces. However, given that lack of formal schooling is shown to clearly disadvantage people with disabilities in accessing mainstream opportunities such as employment, as noted in the studies referred above, in this book, our attention is specifically on formalized educational spaces, namely mainstream and, in some cases, special schools in Southern contexts.

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We also conceptualize education as of value throughout a person’s life course and are not restricted to debates solely focusing on primary years. Rather, the significance of early childhood development and education (as discussed in Lynch and Gladstone’s chapter) and the potential of higher education (as demonstrated in Howell’s chapter) are important to consider.

What we know and need to know? Thus, while the promise of education for all, including those with disabilities, has been enshrined in international commitments and clear evidence of returns at various levels is evident, what remains unclear is how best this vision can be achieved in practice. While this is an issue facing all countries, both with more advanced education systems and with developing ones, we are particularly focused on countries in Africa and South Asia which are dealing with significant inequalities, magnified as a result of issues around poverty. No discussion focusing on the education of children with disabilities can be conducted in isolation from the broader education system. According to the World Development Report (World Bank, 2018), the recent expansion in education can only be termed as impressive by historical standards. Over the last few decades, the net enrolment in education in low-income countries has greatly outpaced the historic performance of today’s industrial countries. For example, it took the United States forty years – from 1870 to 1910 – to increase girls’ enrolments from 57 per cent to 88 per cent. By contrast, Morocco achieved a similar increase in just eleven years (World Bank, 2011). By 2008, the average low-income country was enrolling students in primary school at nearly the same rate as the average high-income country (Pritchett, 2013). However, what is most worrying is the quality of schooling – ‘schooling ain’t learning’ (Pritchett, 2013). The 2014 Global Monitoring Report, ‘Global Learning Crisis’ (UNESCO GMR, 2014, p. 19), clearly depicts how, even after several years in school, millions of students lack basic literacy and numeracy skills. In urban Pakistan in 2015, only three-fifths of grade 3 students could correctly perform a subtraction such as 54 – 25, and in rural areas, only just over two-fifths could perform it correctly (ASER Pakistan, 2015a, 2015b). This slow start to learning means that even students who make it to the end of primary school do not master basic competencies. The learning crisis amplifies inequality: it severely disadvantages those who are in most need of a good education, which can lead to better future life opportunities. Nonetheless, this push towards fulfilling the promise of education for ‘all’ has notably resulted in a surge of children, who were traditionally kept out of the formal education system, now accessing school. This is bound to have a significant impact on different levels of the educational system. A question that is thus unsurprisingly and rather frequently raised is, are schools ready to meet the increased diversity of educational needs? Numerous research studies provide evidence that the answer is clearly no. In essence, what the research highlights is that, while policies have provided the impetus for this positive development, the systemic realities are limiting what schools are able

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to provide children with disabilities. The insufficient economic resources available to support the policy commitments have frequently been raised (Engelbrecht et al, 2016; Mukhopadhyay, 2015). Absence of appropriate physical and human infrastructure has been shown to hinder access and participation for children with disabilities in school (Das et al., 2013; Gregorius, 2016; Lamichhane, 2013). Another area that has received significant attention is the inadequate training of teachers and their limited knowledge and skills to make the curricular accessible to children with disabilities (Engelbrecht et al., 2016; Mukhopadhyay, 2015; Taneja Johansson, 2014a). However, children with disabilities are going to school, a reality which needs to be celebrated, but there is also an urgency for not letting down this generation of children. Here it is also worth reflecting on how, on the one hand, global declarations towards educating children with disabilities have undoubtedly shaped nationallevel developments; they have also resulted in the propagation of a homogenized and unproblematic notion of what the education of children with disabilities should look like (Le Fanu, 2013; Singal & Muthukrishna, 2014). Developments in the field of inclusive education are a clear reflection of these tensions and dilemmas. In mapping out the development of inclusive education, the Salamanca Framework of Action (UNESCO, 1994) is regarded as the seminal declaration in the field. The framework with its focus on providing ‘those with special educational needs [must have] access to regular schools which should accommodate them within a childcentred pedagogy capable of meeting these needs’ (p. viii) was very powerful in promoting the education of children with disabilities globally. It successfully linked the issue of children’s right to education to an argument that an inclusive approach supported the development of wider educational systems. It noted clearly that, regular schools with this inclusive orientation are the most effective means of combating discriminatory attitudes, creating welcoming communities, building an inclusive society and achieving education for all; moreover, they provide an effective education to the majority of children and improve the efficiency and ultimately the cost-effectiveness of the entire education system. (p. ix)

The Salamanca Statement marked the beginning of a new movement and soon became a phrase with international currency (Ainscow & Booth, 1998). While it became the guiding principle for many national documents and programs, it rapidly began to be used to refer to anything from physical integration of students with disabilities in general education classrooms to the overhauling of curricula, classrooms and pedagogies within the broader education systems. As the concept of inclusive education got transported and borrowed across countries, the ambiguities encompassing inclusive education within countries were magnified (e.g. Pather, 2006, Taneja Johansson, 2014b). Resulting from the neglect of the diversity of national situations, where existing realities of every country are different, this ‘international orthodoxy versus national realities’ (Urwick & Elliott, 2010) soon collided. Taneja Johansson’s chapter illustrates this by drawing on research findings from African and Asian countries. In recent years, there has been a growing critique of the uncritical and naive transfer of toolkits and indexes promoting inclusive education, primarily developed by

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Northern-based academics, funded by international organizations with little experience of realities of schools in the remotest and rural parts of deprived communities in many Southern contexts (e.g. Le Fanu, 2013; Singal & Muthukrishna, 2014). These seemingly visionary texts/packages are underpinned by assumptions that contexts are similar. Based on a comprehensive analysis of a range of pedagogic manuals developed by international development agencies, Le Fanu (2015) concludes that some of the approaches noted in these manuals to support inclusion for children with disabilities were at best rather problematic. Commenting on the broader field of education, King (2007) perceptively noted how the naive propagation of approaches across contexts is disempowering for teachers and policymakers in the South, who are caught in the vicious web of trying to strive for goals and markers of success that are framed by donor organizations influenced by such rhetoric. Over two decades back, O’Brien and Forest (1989, p. 6) rightly observed: ‘There is no complete procedure for instant inclusion.’ This statement remains true even today as there is little robust evidence in relation to how best to provide for a meaningful and effective educational experience for children with disabilities in formal school settings, specifically in Southern contexts. It is worth noting that the question here is not simply about propagating the possibility of inclusive education in Southern contexts. Rather, more fundamental questions are around how to develop systems to support inclusion which acknowledge and draw on the real concerns of different countries which are faced with challenges of low overall educational indicators, plagued with the lack and absence of teachers, trying to deliver basic learning skills, where concerns are about the scarcity of accessible and clean lavatories and not high-tech laboratories. Additionally, most of these countries are straddled with the baggage of colonial legacy and pressures to respond to a globalized era, where turning to international agencies for expert knowhow is valued. The chapters in this book are anchored in these contextual realities. While some of our authors use the term ‘inclusive education’, we encouraged them to define what this specifically meant in their contexts (see Rose & Rajanahally; Naraian; Dart, Mutemba, & Gunnell, Kett, Deluca, & Carew). In few other instances, authors actively refrained from using this terminology and attempted to describe the nature of the educational provision rather than labelling it (see Howell; Taneja Johansson).

Understanding disability It would be irresponsible of us if we did not define disability. However, in doing so, we are also mindful of Albercht, Seelman and Bury’s (2001) thought-provoking opening statement to the Handbook of Disability Studies, which notes: ‘Disability is an enigma that we experience but do not necessarily understand’ (p. 1). Various researchers remind us that disability is a complex multidimensional concept which does not lend itself to a single definition. It is a continuum rather than an absolute condition, which is experienced at both private and public levels, while others have noted the cultural dimension of disability, such as Harriss-White (2003), who perceptively noted that ‘disability is a relative term because cultures define differently their norms of being and doing’ (p. 3). For instance, in one context an individual who controls diabetes with diet

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alone is considered disabled, while in others someone is disabled only if he or she has impairments that permanently and completely prevent the individual from working. Others have rightly argued that the linguistic construction of the word ‘disability’ in some local languages is itself very different from that assumed in other cultural and contextual settings. Lwanga-Ntale (2003) while undertaking field research in Uganda, using a range of qualitative methods, noted various difficulties faced in defining and identifying people with disability. He noted how in the local language the term commonly used to identify someone as ‘disabled’ refers to someone with physical impairment, mostly of the upper and lower limbs. Thus, based on his research insights, Lwanga-Ntale noted there was an increased likelihood of excluding individuals with learning difficulties, the blind, the deaf, epileptics, etc., simply because the local term being used emphasized certain impairments over others, thus making some groups even more invisible than others. In addition to cultural and linguistic dimensions, legislative and political factors vary across contexts and sometimes within country contexts (Jeffery & Singal, 2008). Thus, we make no claims of having a common definition of disability across this book. Rather, in our conceptualization of disability, we define it in accordance with the World Health Organization’s International Classification of Functioning, Disability and Health (WHO, 2002). It considers disability and functioning as outcomes of interactions between health conditions (diseases, disorders and injuries) and contextual factors (WHO, 2002). Among contextual factors are external environmental factors (e.g. social attitudes, legal and social structures, natural and built environment, products and technology) and internal personal factors, which include gender, age, coping styles, social background, education, profession, past and current experience, motivation and self-esteem, all of which can influence how much a person participates in society (WHO, 2002). This view of disability, which positions it as part of the human condition, is central in the discussions of the World Disability Report (WHO, 2011). There is growing acknowledgement that almost everyone will be temporarily or permanently impaired at some point in life, and those who survive to old age will experience increasing difficulties in functioning. Therefore, it is no surprise that disability is commonly regarded as a multidimensional, dynamic and complex construct. Disability is not homogeneous or static in nature. People with disabilities are highly heterogeneous and have diverse personal characteristics with differences in gender, age, socio-economic status, sexuality and ethnicity, which intersect in a multitude of ways making disability a hugely personal experience. As noted previously, while we acknowledge that disability is not a discrete, fixed and objective category, which intersects with a range of different factors, we maintain that a particular focus on disability is essential. This lack of a shared definition of disability has been most hindering when collecting data on disability and is regarded as one of the biggest barriers in advocacy (World Bank, 2018). Over the last few years, there has been a significant push by organizations, such as the WHO and UNICEF to develop a better understanding of disability categorization, which are discussed in detail in Mactaggart and Kuper’s chapter. Another important aspect to highlight here is that disability particularly in the countries that this book focuses on has a strong relational dimension. Researchers in a range of contexts have shown that experience of disability reflects the ‘collective’ (e.g. Chataika &

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Mckenzie, 2013; Fazil et al., 2004; Gona et al., 2010; Hartley et al., 2005; Nabawy Ahmed Moawad, 2012). Of course, this relational aspect not only has its strengths in supporting persons with disabilities but also poses a range of challenges, wherein individual needs and aspirations may be neglected for the perceived larger good of the household/community. This is discussed in greater detail in Singal’s chapter in this book.

Clarifying terminologies Disability Terminology has always been a point of confusion and contention within the field. In this book, we have chosen to use the word ‘disability’ and not any variant of the term, ‘special needs’, that is special educational needs or special needs education. In many countries of the North, there has been a transition from using ‘disability’ to a more encompassing terminology of special educational needs. A key reason for this was to bring into focus other sources of disadvantages and marginalization, not just disability that could result in learning difficulty. While this terminology was transferred to countries in the South through global frameworks, declarations and consultants from the North, its meaning never caught on. For example, Singal (2010) discusses how Indian policy documents often refer to children with special needs. The term is not defined and seems to be regarded as synonymous with children with disabilities. In countries of the South where social and economic deprivations are omnipresent, girls are less likely to be in school than boys are, and where language, ethnicity and geographical location are common exclusionary factors, the notion of special educational needs could simply extend to all these children. Thus, the label of special educational needs in countries of the South is of little relevance and value (Jha, 2002). In line with our earlier articulated conceptualization of disability, we have encouraged authors to use person-first language such as ‘persons with disabilities’ and not ‘disabled people’. By using this term, we attempt to highlight a need to focus on the individual rather than the disability. Others might argue for the use of ‘disabled people’, as it provides a more accurate description that people are disabled by society. We acknowledge that language used to describe disability usually reflects social, political and moral values. Nonetheless, certain language used to describe disability might be considered more inclusive in a particular social, geographical and theoretical context and might elicit a negative response in another. Our choice to use person-first language arises from the geographical spaces our book has in focus. In many countries of the South, disability continues to be highly stigmatizing, and we use the personfirst language to forefront the individual and believe that this is most respectful of the people and the contexts in which this work is located.

South/Southern contexts Throughout the book, we have chosen to use the term ‘South’/’Southern contexts’. In using this term ‘South’, we are drawing on the vast and now well-established body of literature

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which shifts focus away from a deficit focus only on economic progress – as developed or developing to a more holistic acknowledgement of global inequalities. Encompassing Asia, Africa and Latin America, countries in the South share characteristics such as being economically poor, having notably high infant mortality rates and having low levels of literacy. North/South terminology came to the fore in the 1960s and was popularized in the Brant Commission’s report, ‘North-South: A programme for survival’ (1980), which highlighted the stark inequalities between the two blocks and proposed ways of redressing these. Over the years, ‘North/South’ has become shorthand for highlighting the complex set of inequalities and dependencies between countries, divided not by geographical boundaries but by fundamental economic inequality. Most importantly, these countries share a colonial past which continues to have an impact on their current structures and geopolitical positioning in an international context (Alasuutari & Andreotti 2015). Indeed these binaries, South and North, are not homogenous in nature as poverty, hunger and illiteracy also exist in pockets in the North, especially for some communities more than others, and indeed pockets of affluence exist in Southern countries, but the significant polarization between these two settings cannot be overemphasized and is best illustrated in the work of Sutcliffe (2001). The legacy of inequality generated by imperialism and sustained through unequal global progress has left the majority of children and youth with disabilities and their families in the South living in stark conditions of inequity and deprivation in almost every sphere of their lives, including education and health care. Barnes and Sheldon (2010) argue that poverty and underdevelopment are the outcome not merely of disabling attitudes and discrimination but also of structural inequalities, social processes and practices that entrench oppression in the South. Additionally, Parameswaran’s (2014) deeply personal and sociological analysis highlights the many privileges that are accorded to people living in the North which do not need to be earned but are accorded by virtue of where they live – these are in real contrast to the lives of the majority of those in the South. In this book, Southern contexts have been adopted as a shorthand to acknowledge a complex set of inequalities faced by people living in certain parts of the world. Despite some criticism of these terms in the literature (Crossley & Watson, 2003), we have chosen to use these to avoid the inherent bias situated within the terms ‘developed’ and ‘developing’ countries, suggesting a ‘transmission of knowledge from so-called developed to developing nations’ and a lack of recognition of the rich histories of many of the so-called ‘developing countries’ (Singal 2010, p. 417). Indeed these categorizations, as Harber (2014) notes, are by no means clear cut, and no terms are completely satisfactory; however, language, for those of us who work in the field of disability know very well, can be powerful markers in how we position, value/devalue people and cultures around us.

Vision, purpose and structure of the book This book provides a selection of perspectives on disability and education in Southern contexts. These are in no way a comprehensive collection of views from the field of

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disability and education in the South or indeed more specifically from South Asia and Africa. What the book does is to provide a collection of chapters written by authors drawing on primary data, historical and theoretical accounts, supported by discussions which are contextually and culturally grounded in the realities of people’s lives. The perspectives captured here are not monolithic accounts; rather, they provide an indication of the different conceptual, theoretical and methodological underpinnings in the current research being undertaken by scholars in the field of disability and education. In selecting the contributors, we were mindful of including a geographical spread, giving preference to academics located in Southern institutions. We envisaged this book project as a way of promoting a dialogue between researchers across disciplinary and geographical boundaries. However, our endeavours were not entirely successful, as is evident from the fact that majority of the authors contributing are located in Northern universities. While we sent a host of invitations, sometimes these went unanswered, and in three cases, the quality of the chapter submitted did not meet the peer review criteria even after substantial feedback. We discuss this issue in more detail in the concluding chapter. When requesting authors to develop their contributions, we set out a few fundamental principles. We insisted that authors elucidate the context within which their research was located and also draw upon and critically engage with empirical data in the field. We were particularly keen on research-focused chapters being mindful of the dominance of personal commentaries and lack of rigorous evidence in the field. Additionally, we actively encouraged authors to avoid overwhelmingly deficit discourses – both towards people with disabilities and in their engagement with the broader contexts in which their studies were located. Rather, we did not wish to perpetuate a wholly negative discourse, which is far too familiar in the field of disability and education in Southern contexts (as also discussed by Singal & Muthukrishna, 2014). In addition, we wanted thoughtful reflections which drew on both barriers and enablers, which are inherent in all systems. When submitting their chapters, we encouraged authors to adopt more dilemmatic perspectives (Norwich, 2013) and be mindful of opportunities for change. We begin the book with three chapters which provide a framing of the key debates in the field. Writing from her experience as the director of three Global Monitoring Reports, Rose’s chapter provides a rich and critical temporal reflection on how international developments have shaped the focus on disability and education in development debates. The chapter provides a detailed account of how the field has come to prominence in the mainstream education discussions, while highlighting the underlying politics and pragmatics surrounding many of these developments. Singal’s chapter adopts a very different lens and focuses on critically examining how the field of disability and education has evolved. It highlights how evidence has been generated and how the lack of it has impacted on current discussions. Mactaggart and Kuper’s chapter takes this forward by specifically engaging with the key question of measuring disability prevalence. Their account not only highlights the many challenges facing the field but also maps out some of the more recent and successful efforts, such as those by the Washington Group on Disability Statistics. These three chapters provide

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an overview of key international policy and research trends of relevance to both developed and developing economies but of particular interest to countries in South Asia and Africa. Section two of the book takes a more nuanced examination of specific issues from a range of different perspectives and contexts. Schuelka’s, Naraian’s and Howell’s contributions draw on research undertaken in Bhutan, India and South Africa, respectively, and all three engage with some key conceptual ideas. Drawing on his work on researching disability in Bhutan, Schuelka makes a strong case for adopting a comparative case study approach towards developing a better understanding of disability and education. In contrast, Naraian draws on concepts from the US Third World feminist literature to discuss the practice of inclusive education in an Indian context with a particular focus on the role of school-based professionals. Howell’s chapter extends our focus beyond primary schooling to examining issues around higher education in South Africa. Calling into question structural and organizational practices, she engages with issues around equity for persons with disabilities, which is particularly powerful in South Africa’s post-apartheid context. Contributions from Taneja Johansson, Rose and Rajanahally, Muthukrishna, and Kett, Deluca and Carew forefront school-based perspectives, particularly in relation to teachers. Discussing the significance of the local context in understanding how education of children with disabilities takes shape, Taneja Johansson’s chapter captures perspectives and practices from a range of stakeholders in urban India to elucidate how responses to schooling of children with autism can only be understood through the medical, political, educational and social spaces within which it plays out. Focusing on the need for quality professional development programmes, Rose and Rajanahally’s chapter provides reflections from a programme of inclusive education they developed for schools in Bangalore (India). Their contribution magnifies the importance of being sensitive to local conditions and contexts in developing such programmes and the need for establishing meaningful partnerships. This theme of contextual sensitivity when working with teachers is developed further in the chapters by Muthukrishna in the context of Namibia and South Africa and by Kett, Deluca and Carew based on their work in Kenya, Sierra Leone and Zimbabwe. The final collection of chapters focuses on the child, family and/or community as the main unit of analysis, taking into account the importance of working with the collective in relation to disability in Southern contexts. Based on her work with young women with disabilities in Pakistan, Hammad’s research highlights the pivotal role played by mothers of these young women in accessing high levels of education and establishing successful careers in many cases. Dart, Matemba and Gunnell draw on powerful accounts of the educational experiences of young learners with albinism in mainstream settings in Malawi, Zambia and Botswana. Keeping this focus on children, Wickenden’s chapter foregrounds the voices of children with disabilities from Uganda and Malawi. Lynch and Gladstone’s contribution not only forefronts the role of families of children with visual impairments in relation to supporting the child’s well-being but it also challenges us to recognize the immense value of early childhood and development programmes. The authors, like many others in this book, highlight the central importance of recognizing local knowledge and nurturing local capacity.

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As editors of this book, we have different reasons for devoting our lives to the study of lives of children/young people with disabilities in the South. In this book, we wanted to reaffirm our respect for these individuals and their rich and diverse contexts. We believe that quality and meaningful education is an ethical right, but its implementation is complex and can only be successful if we challenge ourselves to listen carefully to diverse ideas, particularly those which draw on local solutions, values and ethics.

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Eide, A. H. & Ingstaad, B. (2013). Disability and poverty: Reflections on research experiences in Africa and beyond. African Journal of Disability, 21(1), 1–7. Engelbrecht, P., Nel, M., Smit, S., & Van Deventer, M. (2016). The idealism of education policies and the realities in schools: The implementation of inclusive education in South Africa. International Journal of Inclusive Education, 20(5), 520–535. Fazil, Q., Wallace, L. M., Singh, G., Ali, Z., & Bywaters, P. (2004). Empowerment and advocacy: Reflections on action research with Bangladeshi and Pakistani families who have children with severe disabilities. Health & Social Care in the Community, 12(5), 389–397. Filmer, D. (2008). Disability, poverty, and schooling in developing countries: Results from 14 household surveys. The World Bank Economic Review, 22(1), 141–163. Gona, J. K., Mung’ala-Odera, V., & Newton, C. R. (2010). Caring for children with disabilities in Kilifi, Kenya: What is the carer’s experience? Child Care, Health and Development 37(2), 175–183. Gregorius, S. (2016). Exploring narratives of education: Disabled young people’s experiences of educational institutions in Ghana. Disability & Society, 31(3), 322–338. Groce, N., Kett, M., Lang, R. and Trani, J. F. (2011). Disability and poverty: The need for a more nuanced understanding of implications for development policy and practice. Third World Quarterly, 32(8), 1493–1513. Harber, C. (2014). Education and International Development: Theory, Practice and Issues. Oxford: Symposium Books. Harriss-White, B. (2003). Destitution in India. Paper presented at the WIDER Conference on Inequality, Poverty, and Human Well-being, Helsinki, 30–31 May 2003. Hartley, S., Murira, G., Mwangoma, M., & Carter, J. (2005). Women in Action: Improving the Quality of Disabled Children’s Lives. Bangalore, India: University College London. National printing Press. Jeffery, R. & Singal, N. (2008). Disability Estimates: Implications from a Changing Landscape of Sociopolitical Struggle (Policy brief 3). Cambridge: RECOUP. Jha, M. M. (2002). School without Walls: Inclusive Education for All. Oxford, England: Heinemann. King, K. (2007). Multilateral agencies in the construction of the global agenda on education. Comparative Education, 43(3), 377–391. Krishna, A. (2004). Escaping poverty and becoming poor: Who gains, who loses, and why? World Development, 32(1), 121–136. Lamichhane, K. (2013). Disability and barriers to education: Evidence from Nepal. Scandinavian Journal of Disability Research, 15(4), 311–324. Lamichhane, K. (2015). Disability, Education and Employment in Developing Countries: From Charity to Investment. Cambridge: Cambridge University Press. Lamichhane, K. & Okubo, T. (2014). The nexus between disability, education, and employment: Evidence from Nepal. Oxford Development Studies, 42(3), 439–453. Le Fanu, G. (2013). The inclusion of inclusive education in international development: Lessons from Papua New Guinea. International Journal of Educational Development, 33(2), 139–148. Le Fanu, G. (2015). Imagining disability? Conceptualizations of learners with disabilities and their learning in the pedagogic manuals of international development agencies. International Journal of Educational Development, 40, 267–275. Liao, J. & Zhao, J. (2013). Rate of returns to education of persons with disabilities in rural China. Paper presented at the 2013 International Conference on Applied Social Science Research, Shanghai (pp. 230–233). Atlantis Press.

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Lwanga-Ntale, C. (2003). Chronic poverty and disability in Uganda. Paper presented at the Staying Poor: Chronic Poverty and Development Policy Conference, Chronic Poverty Research Centre, Manchester. Available online: http://www.chronicpoverty.org/ uploads/publication_files/CP_2003_lwangaNtale.pdf Margolis, P. A., Stevens, R., Bordley, W. C., Stuart, J., Harlan, C., Keyes-Elstein, L., & Wisseh, S. (2001). From concept to application: The impact of a community-wide intervention to improve the delivery of preventive services to children. Pediatrics, 108(3), E42. Mitra, S., Posarac, A., & Vick B. C. (2011). Disability and poverty in developing countries: A Snapshot from the world health survey. World Bank Social Protection Working Paper No. 1109. Available online: https://papers.ssrn.com/sol3/papers.cfm?abstract_ id=1908128. Mitra. S., Posarac, A., & Vicky, B. (2013). Disability and poverty in developing countries: A multidimensional study. World Development, 41, 1–18. Mont, D. & Nguyen, C. (2013). Does parental disability matter to child education? Evidence from Vietnam. World Development, 48, 88–107. Morgon Banks, L. & Polack, S. (2014). The Economic Costs of Exclusion and Gains of Inclusion of People with Disabilities: Evidence from Low and Middle Income Countries. International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine and CBM. Available online: http://disabilitycentre.lshtm.ac.uk/ files/2014/07/Costs-of-Exclusion-and-Gains-of-Inclusion-Report.pdf Mukhopadhyay, S. (2015). West is best? A post-colonial perspective on the implementation of inclusive education in Botswana. KEDI Journal of Educational Policy, 12, 1. Mwaniki, M. K., Atieno, M., Lawn, J. E., & Newton, C. R. (2012). Long-term neurodevelopmental outcomes after intrauterine and neonatal insults: A systematic review. The Lancet. 379(9814), 445–452. Myers, J., Pinnock, H., & Suresh, S. (2016). #CostingEquity: The case for disabilityresponsive education financing. London: International Disability and Development Consortium, Light for the World. Available online: https://www.light-for-the-world. org/sites/lfdw_org/files/download_files/costingequity-_the_case_for_disabilityresponsive_education_financing_15032017_acs_pdf.pdf Nabawy Ahmed Moawad GEL (2012). Coping strategies of mothers having children with special needs. Journal of Biology, Agriculture and Healthcare 2(8), 77–84. Norwich, B. (2013). Addressing Tensions and Dilemmas in Inclusive Education: Living with Uncertainty. Oxon: Routledge. O’Brien, J. & Forest, M. (1989). Action for Inclusion: How to Improve Schools by Welcoming Children with Special Needs into the Regular Classrooms. Toronto: Inclusion Press. Pal, G. C. (2010). Dalits with disabilities: The neglected dimension of social exclusion. Indian Institute of Dalit Studies. Working Paper Series, 3(4). Available online: http:// www.dalitstudies.org.in/wp/1003.pdf Parameswaran, G. O. (2014). The tale of two worlds. Unpacking the power of the global north over the global south. In S. N. Asumah & M. Nagel (Eds.), Diversity, Social Justice, and Inclusive Excellence: Transdisciplinary and Global Perspectives (pp. 297–308). Albany NY: Suny press. Pather, S. (2006). Demystifying inclusion: Implications for sustainable inclusive practice. International Journal of Inclusive Education, 11(5–6), 627–643. Pather, S. (2011). Evidence on inclusion and support for learners with disabilities in mainstream schools in South Africa: Off the policy radar? International Journal of Inclusive Education, 15(10), 1103–1117. doi:10.1080/13603116.2011.555075.

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Pritchett, L. (2013). The Rebirth of Education: Schooling Ain’t Learning. Baltimore: Brookings Institution Press. Rose, R. (Ed.) (2010). Confronting the Obstacles to Inclusion: International Responses to Developing Inclusive Education. London: Routledge. Scherzer, A. L., Chhagan, M., Kauchali, S., & Susser, E. (2012). Global perspective on early diagnosis and intervention for children with developmental delays and disabilities. Developmental Medicine & Child Neurology, 54(12), 1079–1084. Singal, N. (2010). Doing disability research in a Southern context: Challenges and possibilities. Disability and Society, 25(4), 415–426. Singal, N. (2016). Schooling children with disabilities: Parental perceptions and experiences. International Journal of Educational Development, 50, 33–40. Singal, N., Bhatti, F., & Januja, S. with Sood, N. (2012). Increased expectations, unrealized gains: Educational outcomes for young people with disabilities in India and Pakistan. In C. Colclough (Ed.), Education Outcomes and Poverty in the South: A Reassessment. London: Routledge. Singal, N., Mahama Salifu, E., Iddrisu, K., Casely-Hayford, L., & Lundebye, H. (2015). The impact of education in shaping lives: Reflections of young people with disabilities in Ghana. International Journal of Inclusive Education, 19(9), 908–925. Singal, N. & Muthukrishna, N. (2014). Education, childhood and disability in countries of the South: Re-positioning the debates. Childhood, 21(3), 293–307. doi:10.1177/0907568214529600. Sutcliffe, B. (2001). 100 Ways of Seeing an Unequal World. London: Zed Books. Taneja Johansson, S. (2014a). ‘He Is Intelligent but Different’: Stakeholders’ perspectives on children on the autism spectrum in an urban Indian school context. International Journal of Disability, Development and Education, 61(4), 416–433. Taneja Johansson, S. (2014b). A critical and contextual approach to inclusive education: Perspectives from an Indian context. International journal of inclusive education, 18(12), 1219–1236. doi:10.1080/13603116.2014.885594. UNESCAP (2003). Final report, UNESCAP Workshop on Women and Disability: Promoting Full Participation of Women with Disabilities in the Process of Elaboration on an International Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities, Bangkok, 18–22 August 2003,www.wwda.org.au/ unescapwwd1.doc. UNESCO (1994). The Salamanca Statement and Framework for Action on Special Needs Education. Madrid: UNESCO. UNESCO (2014). Teaching and Learning: Achieving Quality for All. EFA Global Monitoring Report 2014. Paris: UNESCO. Available online: http://www.uis.unesco.org/Library/ Documents/gmr-2013-14-teaching-and-learning-education-for-all-2014-en.pdf UNICEF (2013). The State of the World’s Children 2013. New York: UNICEF. United Nations (2006). United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Available online: http://www.un.org/disabilities/convention/ conventionfull.shtml United Nations (2015). Sustainable Development Goals. New York: United Nations. Urwick, J. & Elliott, J. (2010). International orthodoxy versus national realities: Inclusive schooling and the education of children with disabilities in Lesotho. Comparative Education, 46(2), 137–150. doi:10.1080/03050061003775421. Walton, O. (2012). Economic Benefits of Disability-inclusive Development (GSDRC Helpdesk Research Report 831). Birmingham: GSDRC.

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Winzer, M. & Mazurek, K. (2017). The convention on the rights of persons with disabilities. In M. J. Hughes and E. Talbott (Eds.), The Wiley Handbook of Diversity in Special Education. West Sussex, UK: John Wiley & Sons. World Bank (2007). People with disabilities in India: From commitments to outcomes. New Delhi: Human Development Unit, South Asia Region. World Bank (2011). World Development Report 2012: Gender Equality and Development. Washington DC: World Bank. World Bank (2018). World Development Report 2018: Learning to Realize Education’s Promise. Washington DC: World Bank. World Health Organization (2002). Towards a Common Language for Functioning, Disability and Health ICF. Geneva: WHO. Available online: http://www.who.int/ classifications/icf/icfbeginnersguide.pdf World Health Organization (2011). World Report on Disability. Geneva: WHO.

Part One

Framing the Debates

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Looking to the Future: Including Children with Disabilities in the Education Sustainable Development Goal Pauline Rose (University of Cambridge)

Introduction Disability has finally reached the spotlight in international debates on leaving no one behind in education. Having been invisible in the Education for All and Millennium Development Goal (MDG) agendas, children with disabilities are clearly identified as a key group needing targeted support to ensure the education Sustainable Development Goal (SDG) is met. This chapter traces the way in which disability has been addressed in global frameworks. Ongoing debates about the complexities of concepts and collecting data on identifying children with disabilities appear to be a reason for progress being held back, but they seem to finally being resolved. The chapter begins by reviewing global frameworks with respect to disability. This is followed by a detailed review of Global (Education) Monitoring Reports that have tracked progress towards education goals since 2002, showing how the reports have evolved in terms of information included on disability with respect to ongoing advocacy for the availability of data and stronger evidence. It also identifies the shifts in focus from identifying whether children with disabilities are attending school to whether they are receiving a quality education. The chapter is informed by my experience as an author of the Global Monitoring Reports between 2008 and 2014. During this time, I was actively engaged in discussions within the report team on the importance and desire to include a focus on disability alongside the challenges in doing so – as this chapter identifies.

Evolution of disability and education in global frameworks: Disability makes it on to the global stage This section reviews the global frameworks that have been agreed over the past twentyfive years to show whether and how disability is mentioned with respect to achieving This chapter has been written with the support of ESRC-DFID grant number ES/M005445/1. The content is the responsibility solely of the author.

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education goals. It highlights the coming to prominence of people with disabilities in the most recent 2030 Sustainable Development Agenda. Throughout the chapter, I use the language related to disability or special education needs as adopted by the frameworks and reports. As noted in the review that follows, this language evolves and changes over time. This is often with good reason. However, as identified in the discussion, my experience in working in global policy contexts is that debates among disability advocates and experts over language have sometimes held back opportunities for evidence-informed debates to frame policy and practice. Global frameworks for education have a long history. Their origins can be traced back to the 1948 Universal Declaration of Human Rights, which laid down the principles of free and compulsory education for all and access to higher levels of education on the basis of merit. Attention to disability was, however, confined to health and well-being in the Universal Declaration, while Article 26 on education focused on promoting tolerance through attention to racial or religious groups. The 1989 United Nations Convention on the Rights of the Child was more inclusive of children with disabilities, including with respect to education. Subsequently, world leaders agreed an Education for All framework at the World Conference on Education for All held in Jomtien, Thailand, in 1990, expressing an ‘expanded vision’ of education with a particular focus on meeting ‘basic learning needs’ (Inter-Agency Commission for the World Conference on Education for All, 1990). The 1990 Jomtien declaration provided a springboard for the six Education for All goals that were endorsed by world leaders at the World Education Forum in Dakar in 2000 (UNESCO, 2000). Indeed, Jomtien’s expanded vision is not only reflected and reinforced in the Dakar Framework for action in 2000 but is very similar to the principles set out in the Incheon Education 2030 framework set out in 2015 (UNESCO, 2015c). Education as a human right is the basis of all three frameworks (Jomtien, Dakar and Incheon), reflecting back to the 1948 Universal Declaration. The Dakar and Incheon Frameworks have been developed alongside the wider Millennium and Sustainable Development Declarations in 2000 and 2015, respectively. As this section outlines, the developments of each of these global frameworks have had different implications for disability in the context of education. During the period of each of the frameworks, major disability frameworks for action have also been developed with implications for the direction of activity in education (Table 2.1).

1990 Jomtien Framework for Action: Attention to meeting basic learning needs for children with disabilities through integrated education The Jomtien Declaration and Framework for Action highlighted children with disabilities as a group deserving ‘special attention’ with respect to their basic learning needs, noting that ‘steps need to be taken to provide equal access to education to every category of disabled persons as an integral part of the education system’ (p. 5). With its commitment that ‘the basic learning needs of all can and must be met’, it highlighted a number of international fora as a basis for moving forward, including the United Nations Decade of Disabled Persons (1983–92). Jomtien’s concern with not only access

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Table 2.1 Disability in global frameworks 1990s

2000s

2015–

Global goal frame works

None

Millennium Declaration and Millennium Development Goals Disability absent

Sustainable Development Goals Disability central to leaving no one behind

Education-specific global goal frameworks

Jomtien Framework on Education for All to meet basic learning needs Identification that ‘disabled persons’ deserve special attention

Dakar Framework on Education for All Weak focus on ‘special education needs’: two broad references to children with special education needs only

Incheon Education 2030 Disability high priority among disadvantaged groups to leave no one behind Two explicit education targets on disability

Concurrent disability frameworks

1994 Salamanca Statement and Framework for Action on Special Needs Education

2005 Framework on EFA Flagship on the Right to Education for Persons with Disabilities: Towards Inclusion 2006 Convention on the Rights of Persons with Disabilities

Source: Author’s review of key documents

to schooling for children with disabilities but also their learning is notable. Despite this focus, their learning has received scant attention over the past two decades and has only re-emerged in the context of the SDGs (see below).

2000 Dakar Framework for Action and Millennium Declaration: Fuzzy attention to disability Attention to people with disabilities within the main text of the 2000 Dakar Framework for Action appears more limited than Jomtien, although the framework does make reference to the 1994 World Conference on Special Needs Education: Access and Quality in Salamanca. Perhaps due to the Salamanca Statement and Framework for Action, the language in the Dakar Framework shifts from disability to special education needs (UNESCO, 2000). The UN Millennium Declaration adopted in 2000 developed in parallel to the Dakar Framework and made a general commitment to equity with specific attention to extreme poverty and gender equality (UN General Assembly, 2000). However, no mention was made of disability or other disadvantaged groups. This was a failure with respect not just to disability but also to showing genuine commitment to tackling inequities more generally. The shift in language from disability in the Jomtien Framework to special education needs in the Dakar Framework without clarification of the reasons and implications of different language makes continuity across the global frameworks difficult to track.

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The different use of language also has the potential to cause some confusion in ways that could have let the international community off the hook from their responsibilities towards children with disabilities. Despite the more limited attention to disability within the Dakar Framework, the Right to Education for Persons with Disabilities: Towards Inclusion was selected as one of nine Education for All ‘Flagships’ programmes for the Dakar era. These flagships were identified as themes where special cooperative, interagency efforts would be needed to achieve the education goals. A reason for the choice of disability as a flagship is reported to be the influence of International Working Group on Disability and Development EFA Task Force through its engagement in high-level EFA UNESCO meetings between 2000 and 2002 (Little, 2011). Established in 2003, a joint secretariat for the flagship hosted by UNESCO in Paris and the University of Oslo was established for a period of three years. In order to identify priorities for the flagship, the secretariat developed a concept note in 2004. This highlighted many of the challenges that have constrained progress towards fulfilling the right to education for people with disabilities (UNESCO, 2004b). As with the Jomtien Declaration, it placed focus on the right to a quality education. The subtitle of the flagship, ‘Towards Inclusion’, was seen as an important signal of an integrated approach, as also indicated by the Jomtien Declaration. However, the precise meaning of ‘inclusive education’ including with respect to how this related to other disadvantaged groups, such as persons from ethnic minorities, diverse language groups, street children, orphans and children with HIV, remained unresolved (Wormnæs, 2015). The concept note identified the problems that arise with a lack of consensus on the definition of disability with variations across as well as within countries. Such variation is understandable, given the importance of recognizing ‘the complexity of disability in all its (visible and non-visible) forms and types’ (UNESCO, 2004b, p. 11). It further identified that ‘the understanding of inclusion must be complex enough to emphasize the importance of mainstreaming persons with disabilities (physical, social and/or emotional) wherever possible into general education, but leaving open the possibility of personal choice’ (p. 22). The flagship concept note further highlights the need to identify intersecting disadvantage with special consideration needed for women and girls and people affected by HIV and AIDS. While this would clearly be important, at the time no approach for undertaking such analysis was available. These issues are reflected in the challenges identified in tracking progress in education for people with disabilities, as elaborated on below. The Framework for Action set out in the flagship concept note was ambitious in scope with a concern at the global level for promoting resource mobilization, global/ regional/local networking and advocacy, interagency cooperation, and improved data and statistics. Further actions were identified at the national level, including to strengthen the inclusion of strategies for people with disabilities in national education plans. Despite, or perhaps partly because of, this ambitious agenda, the flagship seemed to peter out subsequent to the development of the concept note. As with other Education for All Flagships, it did not receive any dedicated resources. It relied largely on staff time allocated by the University of Oslo for the initial work. It

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received financial support from the Norwegian Education Trust Fund of the World Bank to develop the concept note (Wormnæs, 2015). Leadership of the flagship was affected with the retirement of a key member of staff in UNESCO, along with the transfer from the University of Oslo to a Finnish team (Little, 2011). Thus, while its aims have remained very relevant, a lack of continuity with the flagship appears to have undermined cohesive, collective action among the disability community over the Dakar period. It is perhaps indicative that a 2015 UNESCO report on the Right to Education for Persons with Disabilities makes no mention to the flagship (UNESCO, 2015b). By contrast, more successful flagships, notably the Inter-Agency Network for Education in Emergencies (INEE) and UN Girls’ Education Initiative (UNGEI), have facilitated a more ongoing coordinated approach to advocacy in their areas.

2015 Incheon Framework for Action and Sustainable Development Goals: Disability takes centre stage Notwithstanding the apparent waning attention to disability over the Dakar period, the importance of including people with disabilities has become more central in the subsequent global frameworks. With a strong focus on leaving no one behind in the Incheon Education 2030 Framework for Action, children with disabilities are identified as requiring specific attention among the most disadvantaged if the education SDG is to be met: ‘We therefore commit to making the necessary changes in education policies and focusing our efforts on the most disadvantaged, especially those with disabilities, to ensure that no one is left behind’ (UNESCO, 2015c, p. 7). The presence of ‘inclusive and quality education’ in the wording of the overarching education goal is indicative of the centrality of this focus. As the concept note of the Flagship on the Right to Education for People with Disabilities noted, there is potential for ambiguity in the use of the term ‘inclusive education’. For some, this has been used to refer to the inclusion of children with disabilities in mainstream schools specifically, while for others, it is about transforming education systems and other learning environments in order to address and respond to the diversity of all learners (Manzurek & Winzer, 2015). With the apparent aim of avoiding potential confusion that has been a concern in the past, the framework sets out its broader understanding of the term ‘inclusive education’ which it defines as incorporating, but not limited to, people with disabilities: ‘Inclusive education for all should be ensured by designing and implementing transformative public policies to respond to learners’ diversity and needs, and to address the multiple forms of discrimination’ (p. 30). The commitment to people with disabilities is similarly reflected in the 2030 Agenda for Sustainable Development. In contrast to the Millennium Declaration, leaving no one behind is central to the Sustainable Development Agenda. As such, the specific needs of people with disabilities, along with other disadvantaged groups, are clearly recognized. Unlike the Dakar Framework and Millennium Declaration that were developed independently, the Incheon Framework and Sustainable Development Declaration were prepared in tandem with the Incheon Framework elaborating on the broader declaration for achieving education objectives specifically. As a result, the language and approach to inclusion of people with disabilities in education are

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common across the 2015 documents. This greater clarity and convergence has the potential to avoid problems with previous frameworks in which fuzziness of terms has not helped in moving forward.

Holding governments to account: Towards a stronger focus on disability in education targets The principles set out in the global frameworks are noteworthy. However, they need to be translated into time-bound targets if they are to mean anything in reality with respect to holding governments to account (Colclough, 2005). There have been developments between each of the periods with respect to target-setting. Unlike Dakar and Incheon, Jomtien did not set global targets but did advocate for the setting of national targets aimed at achieving basic learning needs, including a proposal for specifying ‘priority categories (e.g. the poor, the disabled)’ in ways that ‘are formulated in terms such that progress toward them can be observed and measured’. By contrast, the six goals that were set at Dakar provided a framework for holding the global community to account for their commitments. Within the Dakar targets, with the exception of goal 6 on quality of education, all included equity in their language, although with variability with respect to disadvantaged groups mentioned. With respect to disability, specific reference is only made in goal 1 (on early childhood care and education) and goal 2 (on universal primary education). In both cases, reference is made to children ‘with special needs’. In parallel to the development of the Dakar goals, the UN Millennium Declaration was translated into eight MDGs in 2000. These goals included one specifically on education, narrowing the broader Education for All frameworks, which had a strong focus on quality and learning, to one goal on primary school completion. Notably, the attention to disadvantaged groups in the MDGs was limited to poverty (MDG1) and gender (MDG3) with no further disaggregation. As such, monitoring of the goals was not expected for people with disabilities. An important lesson for the SDGs relates to one of the greatest failures of the MDGs, namely insufficient progress towards reaching the marginalized. There are two likely reasons why disadvantaged groups have not sufficiently benefited despite this focus in the goals themselves. One is that the MDGs – which dominated development planning between 2000 and 2015 – did not incorporate equity as a core principle. Another is that the lack of measurable equity targets and insufficient availability of data disaggregated to track progress towards achieving equality in education within countries have let down the most marginalized, including the poorest, girls, those with disabilities, and those in rural areas or urban slums over the past decade (Rose, 2015). This lesson has been taken into account in the 2030 goals and targets. Along with the stronger focus on people with disability in the Incheon Education 2030 Framework for Action and Sustainable Development Frameworks, there is also more explicit attention to tracking their progress. This focus is consistent with more general attention to tracking progress for disadvantaged groups in order to identify who is being left behind. Even so, it is noteworthy that disability is explicitly mentioned in target 4.5:

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‘By 2030, eliminate gender disparities in education and ensure equal access to all levels of education and vocational training for the vulnerable, including persons with disabilities, indigenous peoples and children in vulnerable situations.’ Significantly, this is accompanied by target 4a: ‘Build and upgrade education facilities that are child, disability and gender sensitive and provide safe, non-violent, inclusive and effective learning environments for all.’ The Incheon Education 2030 Framework elaborates further on other targets, identifying the need for special attention to people with disabilities, along with other disadvantaged groups in early childhood and tertiary education, for example. To enable tracking of progress towards targets, the Incheon Framework further commits to the collection of ‘better-quality data on children with disabilities, cataloguing different disabilities and impairments and assessing their level of severity’. It would seem, then, that many of the concerns laid out in the concept note of the Dakar Flagship on the Right to Education for People with Disabilities are being acted upon in the 2030 agenda. While it is unlikely that this is a direct outcome of the flagship, given its influence seemed to be diminishing, the concerted efforts of disability experts and advocacy groups have no doubt played an important role. This attention was no doubt facilitated by the development of the 2006 Convention on the Rights of Persons with Disabilities.

Tracking progress of education for children with disabilities in Global Monitoring Reports Now that disability has reached centre stage in global frameworks, the next step will be to ensure the vision is realized to the benefit for those who have been excluded from good quality education. This requires monitoring of progress towards the commitments that have been made. The Education for All Global Monitoring Report was instigated in 2002, tasked with the responsibility of tracking progress towards the six goals established at Dakar. This global monitoring is widely recognized as providing a basis for presenting an independent, evidence-based assessment of the status of the education sector. This section assesses how disability has been addressed across successive editions of the Global Monitoring Report (GMR), through to it becoming the Global Education Monitoring Report (GEMR) with responsibility for tracking progress towards the SDGs from 2015. It reviews the reports chronologically in order to identify changes in their attention to disability over time. The section mirrors issues mentioned in the preceding section with the reports highlighting the ongoing lack of a consistent definition of inclusive education and challenges in data availability. Despite these being raised throughout the reports, it shows how some improvements in evidence and data have helped to move forward in more recent reports in highlighting the challenges that children with disabilities face with the aim of finding solutions to achieving inclusive education. As noted, it draws on my experience as one of the report authors from 2008 to 2011 and director of the 2012 and 2013/4 reports.

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Equity has been at the heart of every edition of the G(E)MRs with concern for highlighting which groups were being left behind. However, from the outset of the reports, challenges were acknowledged in tracking such progress, including for people with disabilities due to data limitations. Before reviewing each of the reports in turn, it is worth pointing out the frustrations of disability advocates on what they consider to be the lack of attention to disability in the reports. For example, Manzurek and Winzer (2015) complain that ‘EFA reports do not disaggregate data for students with disabilities, do not spell out the situations of disabled children in much empirical detail, and do not engage in any great depth with the educational status of such children’. Similarly, the concept note of the Right to Education for People with Disabilities Flagship noted that the first three EFA Global Monitoring Reports lacked ‘any detailed information on access of persons with disabilities to basic education, adaptation of educational system process to accommodate to their needs, completion, or effectiveness in terms of livelihood outcomes’. These (common) criticisms fail to recognize that the annual reports are dependent on available data and evidence for tracking progress, assessing the challenges and identifying policy solutions; they do not themselves create new data and evidence. To support the preparation of the reports, background papers are commissioned each year. These have included sixteen explicitly on disability with most of the reports commissioning at least one on the topic. Indeed, in response to concerns raised by the Dakar disability flagship of insufficient information in the 2002 report, the flagship secretariat was invited to submit a short background paper about EFA, gender and disability in Norway for the 2003/4 report (Wormnæs, 2015). While the reports do not create new data and evidence, they do have a responsibility to advocate for more and better data and evidence where it is needed, and indeed many of the reports have highlighted this with respect to disability. Throughout the reports, data is presented where available, showing that people with disabilities are far less likely to attend school than other groups. This includes widely cited global statistics such as from the World Health Organisation, as well as from country studies. However, the reliability of data on disability has often been difficult to gauge, and their original sources are not possible to be traced. The rest of this section presents a review of each of the reports in turn, showing the evolution on data and evidence that are available to be drawn upon, along with the ongoing advocacy for the need for more and better data and clarity of definitions.

Monitoring progress towards the 2000 Dakar Education for All Goals from 2002 to 2009: Disability remains elusive From the 2003/4 report, concern has been continuously raised in the GMRs that children with disability are among those facing the greatest disadvantage with respect to education. The 2003/4 report on gender raised issues with respect to disability that continue to be highlighted today. Addressing the ‘hidden face of disability’, it noted intersecting of disadvantage: ‘Widespread cultural biases based on both gender and on disability greatly limit the educational opportunities of such girls’ (UNESCO, 2004a, p. 131), and ‘disabled girls are more likely to grow up in poor families, a reality that

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places them at further educational disadvantage’ (p. 132). The report notes that there are varied definitions ‘which demonstrate that disability is a social construct, as much rooted in cultural, social, political, legal and economic factors as in biology’ (p. 132). A recurrent theme throughout subsequent editions was also raised, namely that evidence is scarce and data limited even for industrialized countries. Referring to a background paper for the report by Rousso (2003), it states: ‘Research results are mainly the product of small qualitative studies. Such research, while invaluable in identifying barriers, rarely includes comparisons with both disabled boys and nondisabled girls, thereby making it difficult to identify the joint impact of gender and disability bias’ (p. 132). Similarly, from the outset, the report identified the diversity of definitions on disability as a constraint on the possibility for global statistics that could reliably identify the scale of the challenge and that ‘just as there is little available information, so there is a dearth of programmes specifically aimed at addressing the educational needs of disabled girls’ (p. 132). With a thematic focus on quality, the 2005 report gave more attention to considering the type of provision needed, stressing the importance of responsive and inclusive schools. Reviewing experience from OECD and non-OECD countries, it proposes that ‘a third option is to reconcile the inclusive and specialized approaches in a “twin track” approach in which parents and learners decide whether to opt for an inclusive regular school or a special school initially with inclusive education remaining the ultimate goal’ (UNESCO, p. 145). However, it reiterated a key point for the reports that ‘meeting the needs of learners with disabilities is particularly challenging, given the unresolved debate between proponents of a strong inclusive approach and those who argue for special needs provision … In large measure this controversy reflects the many definitions and types of disability’ (p. 145). Issues related to the lack of data continued to be raised in the 2006 report on literacy and 2007 report on early childhood care and education. The 2007 report highlights children with disabilities as one of two groups as particularly marginalized (along with children in emergency contexts). Its ability to draw clear policy conclusions is held back again by the fact that ‘views differ on how best to overcome exclusion of the disabled’ (p. 76). The 2008 midterm stock-take of progress again gives specific attention to disability proposing ‘inclusive education’ as an appropriate policy response. It refers to the 2006 Convention on the Rights of Persons with Disabilities which was still not in force at the time of publication but signed by 109 countries. This was seen to mark a shift from a ‘medical welfare’ model to a human rights one. For the first time, this report had specific data on which to draw to identify the extent to which children with disabilities were being held back in their education relative to their peers. Referring to analysis that had recently been conducted by Filmer (2005), the report also highlights wide variation in the figures on disability prevalence across the countries with a potential reason being that the data taken from household surveys uses different definitions of disability. Thus, while this indicates a positive move towards the availability of data for tracking progress, limitations remained apparent with respect to their quality and scope.

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By 2008, the debate and evidence on inclusive education with respect to children with disabilities had evolved with the 2006 Convention presenting a firmer stance towards an ‘integrated approach’. Indicative of the growing attention disability was receiving, the report was able to draw on newly documented examples from Uganda, Ethiopia and Brazil on how countries were addressing the education needs for children with disabilities, including through support provided to teachers in specialized teacher training programmes and via school clusters and resource centres. The 2009 report on governance put a spotlight on disability as one of three groups that face barriers along with child labourers and those facing ill health. Once more, the report raises a concern of relevance to the report that aims to track progress drawing on available data that ‘data constraints make cross-country comparison of the impact of disability difficult. There is no internationally agreed definition of “disability”, and few governments closely monitor the impact of disability on school attendance’ (p. 82). Even so, it is able to draw on extended analysis by Filmer (2008, across fourteen countries) again showing the relative disadvantage that children with disabilities faced in access to education. The report notes the importance of an ‘integrated approach’ to schooling rather than treating children with disabilities as a ‘special’ group requiring separate classes or institutions. It goes further in stating the need for a ‘far stronger focus on public policy facilitating access for the disabled – and on political leadership to change public attitudes’ (p. 83). It also more specifically recognizes that compensatory financing is likely to be needed ‘to assist students who are disabled or have special needs’ (p. 143). The report provides an analysis of national policy and planning documents, noting that only ten out of twenty-eight plans endorsed by the EFA Fast Track Initiative (and so had been reviewed for their ‘credibility’) included strategies for including children with disabilities. In its review of Poverty Reduction Strategy Papers, it further identifies that ‘approaches to supporting children with disabilities are mainly focused on improving accessibility of school infrastructure rather than paying attention to curriculum reform’ (p. 201). It also extends recommendations in previous reports to recognize the need for a cross-sectoral approach, beyond education alone, to tackle the exclusion that children with disabilities face.

Engaging with disability for the 2010 Education for All Global Monitoring Report on Marginalization An evolution in attention to disability is apparent across the seven reports between 2002 and 2009 with growing availability of data and case studies of inclusive education practices. However, insufficient data and evidence of the type needed for GMRs continued to be a problem for making clear policy recommendations. From my observations of attempting to gather evidence for the report, this has not entirely been due to a lack of investment by funders of data and research. Until recently, there has also been a resistance to it among disability experts and advocates. This became apparent in the development of the 2010 GMR, which focused explicitly on the theme of marginalization. Given the theme, disability received the most attention of all of the reports published to date. It is, therefore, worth reflecting on the process of this

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report with respect to what was included in more detail, including reflections from my perspective, as one of its authors. In preparing the report, we had a particular concern for including a strong focus on disability with the topic included as one of five sections covering key aspects of marginalization. We reached out to disability experts, and disability groups also campaigned for strong attention in the report. However, achieving such a focus was not straightforward. Firstly, the challenges that were highlighted in many of the previous reports remained prevalent. There was little published research on the topic that could be drawn upon, as well as even less data that could reliably provide an assessment of the extent of disadvantage faced by people with disabilities. The report continued with the message that ‘globally comparable, reliable data are notoriously difficult to obtain’ (UNESCO, 2010, p. 181). It referred to the still widely cited World Health Organisation figure on the number of children with disabilities, noting this was based on a rough estimate from the 1970s. It also highlighted the likely under-reporting of disability in official statistics. Secondly, the lobbying by disability groups for a strong profile on disability in the report was not backed with them providing the type of evidence needed to support their arguments. Rather, a considerable amount of the debate at that time was about the dangers of identifying children with disabilities within data sets, from the perspective of their concern that this could be stigmatizing. The use of language that was used in referring to people with disabilities in policy circles was also a cause for their concern, as they felt that this further undermined their status in society. The importance of recognizing the ‘social model’ rather than ‘medical model’ was stressed – an approach that the report (as previous ones) recognized as important. More generally, the complexities of disability were often raised by advocates, but solutions from them on how to translate this into clear policy messages remained lacking. This resonates with the messages in the 2005 Flagship concept note (see above) that highlighted challenges of not having clarity of concepts. Moreover, the lobbying was not coordinated and sometimes presented the report team with contradictory messages, for example on whether or not identifying the numbers of children with disabilities was desirable or whether collecting such data would be stigmatizing. This contrasts with experience of the 2011 report on conflict where the INEE (another of the Dakar Flagships) provided coordinated support to the report team. INEE helped to identify experts, data and evidence for inclusion in the report. Similarly, another of the Dakar Flagships, the UNGEI, has provided support in recent years through organizing a background paper on the report theme with a gender perspective. While both a lack of evidence and data along with the need to translate complex issues into clear policy messages made the task for the report difficult in giving due attention to people with disabilities, it enabled the opening of a debate which has proven important in moving forward. There were some ways in which the 2010 report was able to go further than previous reports with some new evidence and data to draw upon. Notably, it provided a focus on the importance of differentiating between severities and types of disability, given the variations in education experiences with data showing the variations in school

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access among children with different types of disability, concluding that ‘disability’ is a generic term covering a multitude of circumstances. Children with, say, severe autism are likely to face very different education-related challenges than children who are partially sighted or who have lost a limb. Impairments that affect the capacity to communicate and interact in ways common in mainstream schools can impose particularly high practical and social obstacles to participation in education (p. 182). The development of the World Inequality Database on Education (WIDE) using household survey data sets for the report attempted to include disability as one of the forms of disaggregation. However, insufficient data made it difficult to include this systematically. Data presented from the Philippines and Uganda did, though, shows that children with disabilities were significantly more disadvantaged than the rest of the population with poverty and disability interacting to reinforce this disadvantage. The report also highlighted progress that countries such as Tanzania were making in strengthening data including with respect to prevalence, distribution and pattern of impairments across the country, which would enable better monitoring of progress. In addition, the 2010 report gave more focus not only on access of children with disabilities in school but also on their experience in the classroom, engaging in a more detailed and critical way with the debate on ‘inclusive education’. It notes that ‘insufficient physical access, shortages of trained teachers and limited provision of teaching aids can diminish opportunities. Many schools, particularly in remote rural areas or in slums, are physically inaccessible to some children with disabilities. Children with sensory or mental impairments can find schools noisy, confusing and threatening’ (p. 182). It engaged further with the inclusion debate by noting that parents and groups representing people with disabilities sometimes demand separate provision, given the gross inadequacy of support in mainstream schools, and that ‘integration is not a panacea. Children with severe disabilities may require highly specialized support’ (p. 202). But separate schooling is not seen as a desirable solution in the report: ‘Putting children with disabilities in special-needs schools or institutions can reinforce stigmatization. It can also deny them a chance to participate in mainstream education, build relationships and develop in an inclusive environment. Moreover, special schools are often chronically underfunded and lack either skilled teaching staff or the equipment needed to deliver a good education’ (p. 182–3). As with the previous two reports, it recognized the additional funding that would be needed to provide teachers with specialized training and children with specially designed learning materials to realize their potential, along with additional financial support to families. But it also identified that financing alone would not be enough. Programmes to change public attitudes were also identified as being necessary to overcome discrimination and stigmatization. In addition, the report identified that children with parents with a disability were also more likely to be excluded from education. In a dedicated section on ‘Reaching children with disabilities’, the report provides further details on different ways in which education reform would be needed to include children with disabilities within classrooms. It highlighted that some of the problems facing children with disabilities are related to wider problems in the quality

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of the education system: ‘integrating children with disabilities into poorly resourced, overcrowded schools with restricted access to toilets and other facilities is not a prescription for inclusive education, especially when teachers are not equipped to meet their needs’ (p. 201). It also identified some more positive country initiatives, along with non-governmental programmes that would benefit from being scaled up and integrated within national plans, such as iterant teaching approaches and linking existing special schools with mainstream schools with the former providing specialized devices and support that some children with disabilities need. As such, in many ways, the 2010 report went further than previous editions in exploring in recognizing the complexities of identifying the diversity of types of severity of disability, while attempting to identify policy options. At the same time, it continued to highlight the constraints in moving forward due to insufficient data and evidence.

The end of the Dakar period: Moving towards learning for children with disabilities The debates on childhood disability continued in the final reports of the Dakar era with a move to greater attention on recognizing the importance not only of their access but also of their learning. This reflects the earlier focus of the 1990 Jomtien Framework for Action on learning basic skills, but that had not yet received adequate attention due to lack of data. The 2011 report has a particular focus on conflict-affected populations, noting the increased incidence of disability in contexts affected by civil war and that ‘for every fatality, many more children are left with debilitating illnesses and impairments that compromise their prospects for access to education and learning’ (p. 142). It discusses the ways in which sexual violence which is more prevalent in conflict settings has psychological effects, including with respect to depression, trauma, shame and withdrawal with devastating consequences for learning. Disability again receives both cross-cutting and specific attention in the 2012 report on Youth and Skills, identifying that people with disabilities face a double disadvantage with respect to discrimination both at school and work. Drawing on experience from Kenya, issues raised were that very few young people with disabilities have had the opportunity to study beyond primary school, workplaces are not adapted, and these young people rarely receive social benefits or other forms of financial support. With its focus on teaching and learning, the 2013/4 GMR is the first to present information on how much children with disabilities are learning, while noting that such information ‘is so scarce that analysis is difficult’ (UNESCO, 2014, p. 22). It identifies that such scarcity is ‘partly because [children with disabilities] sometimes do not take part in the tests, and partly because the data are not sufficiently broken down by type of impairment’ (p. 212). With respect to teachers, the report noted that people with disabilities often face difficulty entering the teaching profession and training to become a teacher. It provided an example where a flexible training programme in Mozambique has helped to overcome barriers for those with visual impairments with scholarships and appropriate college facilities supporting their opportunities

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for training. The report further identifies that very few systems provide training in inclusive education approaches or in addressing attitudes of teachers and head teachers towards children with disabilities, with Vietnam identified as an example where this is happening. The report also highlighted other positive examples of working with community-based assistants and trained teaching assistants to promote an inclusive learning environment. The 2013/4 report also began to consider monitoring of the goals to be set after 2015. In a box on access of children with disabilities, it again laments the unavailability of data, identifying reasons for the difficulties: ‘Statistics on the education experience of children with disabilities are rare in part because household surveys, which tend to be the best source of information on access to school by different population groups, do not have sufficient information on the degree or type of disability, or their sample size is too small to make it possible to draw accurate conclusions’ (p. 56). In its recommendations on monitoring progress in the anticipated post-2015 goals, the report recommended that ‘collecting data on children with different types and severity of impairments needs to be improved urgently so that policy-makers can be held accountable for making sure these children’s right to education is fulfilled’ (p. 101). Responding to this would appear to be an important lesson in moving forward, learning from the experience of attempts to track progress over the Dakar period. The 2015 report that marked the end of the EFA and MDG eras summarized many of the arguments made in previous reports. As with all reports, it continued to note problems due to paucity of data. A box highlighted the intersecting disadvantage faced by people with disabilities, and so the importance of a cross-sectoral approach, as previously noted in the 2003/4 report on gender and the 2009 report on governance, in particular. It also repeated concerns due to the lack of universal agreement on the meaning of ‘inclusive education’, dedicating a box to this. It does, however, identify progress over the fifteen years of EFA towards ‘growing awareness and understanding of disability from a social perspective’ (UNESCO, 2015a, p. 101). However, it notes that including children in mainstream schools ‘is still difficult to achieve in practice, and segregation tends to be the dominant practice in many countries’ (p. 101), although many countries are attempting to move towards a more inclusive approach. Other positive moves were also apparent by 2015. The UK Department for International Development was reported to have committed to prioritizing disabilityrelated programming and research, and the Global Partnership for Education had pledged to make disability a priority financing area in education planning. It refers to Global Partnership for Education analysis that found ‘as of 2014, 30 GPE grants have components related to supporting children with disabilities; in some cases, this has helped countries leverage support from other partners for mainstreaming and inclusion of children with disabilities’ (p. 271). This focus of bilateral and multilateral agencies marks a strong shift in recognition of the need for a special focus on disability with such dedicated support not apparent at the beginning of the EFA era. The report also refers to a ‘positive shift in data collection initiatives’ that were under way to improve data collection and to develop national-level disaggregated data systems on disability (p. 102). In sum, despite the relative neglect of disability within the Dakar goals themselves, the era of EFA Global Monitoring Reports has reflected growing consensus on ways

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to include children with disabilities in education systems with some improvements in data while serious limitations remained.

Disability post-2015: Specific targets place emphasis on data needs The new era of Global Education Monitoring Reports, starting from 2016, has taken forward the use of data for monitoring progress for children with disabilities in education. With two specific SDG targets referring to disability (4.5 and 4a) and disability clearly identified as cutting across other targets if the commitment to leaving no one behind is to be met, subsequent reports have a more explicit mandate to track their progress. In the first of these reports, for target 4.5, emphasis is placed on the need for an ‘operational and internationally comparable measure of disability, which has remained elusive, because disability has diverse forms and there are important ethical and cost considerations’ (p. 265). Even so, in the light of the more explicit need for monitoring, the report highlights two important developments towards developing comparative data over the past decade, one from OECD and the other based on the work of the International Classification of Functioning, Disability and Health, adopted by the World Health Assembly in 2001. The report refers to the field-testing of the questions developed by Washington Group on Disability Statistics between 2012 and 2016. These approaches potentially provide a basis for stronger monitoring than was possible during the Dakar era but still require the questions to be systematically included within surveys in the near future to enable tracking of progress towards the 2030 SDG deadline. The overarching message presented for target 4a the current problem that ‘due to lack of consensus on a definition and often limited monitoring capacity, it is hard to know how many school facilities are accessible to children with disabilities’ (UNESCO, 2016, p. 306). It does, however, note that UNICEF has designed an Inclusive Education Rating System tool that also seems in part to respond to Article 9 of the 2006 Convention on the Rights of Persons with Disabilities. The article calls ‘on countries to “[d]evelop, promulgate and monitor the implementation of minimum standards and guidelines for the accessibility of facilities and services open or provided to the public” and explicitly refers to schools (United Nations, 2006)’ (p. 311). Synergies of this with SDG target 4a potentially make monitoring of this commitment more urgent. At the same time, the report further notes that limiting monitoring to physical accessibility is necessary but not sufficient for ensuring access is disability-sensitive with the agreed indicator going beyond this to specifically refer to ‘adapted infrastructure and materials for students with disabilities’ (p. 307). Unpacking what this means, and how it can be tracked, will no doubt continue to be a cause for concern. In the light of the identified challenges over the Dakar period resulting from disability advocates not reaching consensus on inclusive education in ways that non-experts could understand, it would be worthwhile for disability experts and advocates coming together to prioritize the identification of a common understanding and propose practical solutions for monitoring of target 4a. The 2017/8 report on accountability included a strong focus on disability. It refers to global and national legal frameworks that hold governments to account for including

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children with disabilities in education. It also presents a Policy Focus on ‘holding governments to account for the right of people with disabilities to education’. Among the key messages of the report, it is again emphasized that ‘the UN Convention on the Rights of Persons with Disabilities outlines state obligations for providing inclusive education. Monitoring compliance is vital but restricted by the vagueness of disability definitions’ (UNESCO, 2018, p. 182). The report reviewed regulations in seventy-one education systems across a range of areas. It found that fewer than half had regulations on toilet facilities for children with disabilities. More encouragingly, the report notes that ‘the next few years will see a steadier flow of data on people with disabilities, as the MICS will include the short questionnaire of the Washington Group’ (p. 187). As has been noted in previous reports, it identifies that ‘the twin challenges will be to assess the extent of disability in the population and its impact on educational disadvantage’ (p. 187), illustrating this with data from demographic and health surveys showing wide divergences in disability prevalence rates which appear to translate into differences in enrolment rates.

Where next for achieving the education SDG for children with disabilities? The focus that targets 4.5 and 4a have given disability has made more urgent the need for clarity of definitions and policy recommendations debated in reports of the Dakar era. In going forward, it will also be key to recall that tracking of progress is expected to be disaggregated by disadvantaged groups, including disability, for all indicators, not just of the two specific targets. The ability to track progress towards 4.5 and 4a is an initial step. Further efforts will be needed in identifying ways to track progress across all targets to show whether improvement is fast enough for children with disabilities not only to catch up but also to achieve all of the targets by 2030. This in turn requires that appropriate strategies are identified and implemented with sufficient funding required, given the need for additional resources as recognized by previous reports. A question in going forward is whether a loose coalition that has emerged and evolved in recent years is the best mechanism for influencing debates and if its work will be sustained. Alternatively, in the light of the impetus towards including children with disabilities and the challenges that have now been clearly and widely articulated, would it be possible to reinvigorate a network of the kind envisaged by the Dakar Flagship? This could be even more imperative in the light of the expectations raised by the SDG and Education 2030 agenda. Seizing this window of opportunity is vital. Recent shifts are worth noting with respect to availability of data not only on children gaining access to school but also on their learning. Notably, the use of Washington Group questions using the Child Functioning Module has been used in household surveys in Pakistan, which includes assessment of children’s basic literacy and numeracy. In the Teaching Effectively All Children (TEACh) project,1 we measured learning gains in basic maths and literacy using the Annual Status of

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Education Report2 and Young Lives survey instruments.3 Our data has shown that children with a disability were less likely to be learning the basics than their peers. This was more pronounced in children with moderate to severe disabilities. Learning for children with disabilities appeared to be influenced by their lower enrolment in school, greater likelihood of repeating a school year and being absent. The experience from Pakistan shows that it is feasible to collect the type of data needed. There is a need to learn from such experiences to find ways to include information more systematically within Education Management Information Systems, as well as to include questions that identify children with disabilities in household surveys (including demographic and health surveys that are collected in a large number of low- and middle-income countries). Over the past fifteen years, huge progress has been made in getting more girls into school and closing the gender gap. Throughout this period, there has been an ongoing debate about whether gender should be mainstreamed in policy debates or if girl-/ gender-specific approaches would be needed to be successful. The outcome of this experience has indicated that a twin-track approach is needed. Disability policy debates have now reached a similar juncture to those of gender fifteen years ago. While there are already strong disability alliances that have successfully advocated for disability in key policy debates (notably most recently with #CostingEquity in the Education Commission), moving forward, a twin-track approach would appear relevant for disability too. This will mean forming closer engagement with groups advocating for leaving no one behind from other perspectives, including on gender and education in emergencies. Forming such coalitions will have further benefits in terms of helping to ensure that the multiple forms of disadvantage that often hold children with disabilities back are tackled.

Conclusion The chapter highlights progress that has been made with respect to the inclusion of children with disabilities in global frameworks. Their inclusion in quality education is now recognized as being central to the achievement of the Sustainable Development Goals with attention throughout the education life cycle from early childhood to higher education. From its outset, the Global (Education) Monitoring Report has highlighted children with disabilities as a neglected group, while identifying challenges in tracking progress due to lack of available data and evidence. Analysis in the reports has become more sophisticated as data has been more available with the 2010 report highlighting the importance of differentiating between types and severities of disability, the 2013/4 report showing how children with disabilities are held back not only in access but also in learning, and the most recent reports identifying new data sources that are potentially becoming available for tracking progress. At the same time, greater consensus among disability experts and advocates on the meaning of inclusive education and the importance of data has helped in moving forward with identifying messages that policymakers can take up. This is not to say

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that the battle is over; rather, it now puts pressure on showing the rights to education of children with disabilities can be realized. This will require ensuring more systematic collection and analysis of data on access to education for children with disabilities, extending this to identifying the extent to which this translates into learning so that they are visibly included in any tracking towards the SDGs. Beyond this, there is a continued need to identify the most appropriate approaches to quality education provision, recognizing diversity of needs according to the type and severity of disability that children experience. Ultimately, the success of any of these global frameworks will be whether and how they impact on the education experiences of children with disabilities. Hopefully, by the time that progress is tracked for their access and learning in 2030, we will no longer be lamenting problems with the data and evidence but rather be able to show robustly that these children, along with their peers, now have access to an inclusive, quality education.

Summary of key points ●

●

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Disability has grown in attention in global education frameworks over the past twentyfive years and for the first time is explicitly included in education targets. To capitalize on the global spotlight, it is vital that disability advocates and experts come together to present clear and straightforward guidance on how to tackle disadvantage that people with disabilities face in education, while recognizing the complexities. It is also important to build on recent initiatives to identifying people with disabilities in national household surveys and other data sets in order to develop a more robust understanding of the scale of the problem with respect to both access and learning.

Suggested questions for discussion 1. Will the SDGs help to ensure the commitment of the right to education for people with disabilities – in what ways? 2. How can progress of people with disabilities best be tracked in education targets to ensure no one is left behind? 3. What are the most appropriate ways to ensure people with disabilities have access to good quality education, in particular in resource-constrained settings?

References Annual Status of Education Report (ASER) (2014). Assessment and survey framework. New Delhi: ASER Centre. Colclough, C. (2005). Rights, goals and targets: How do those for education add up? Journal of International Development, 17(1), 101–111.

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Filmer, D. (2005). Disability, Poverty and Schooling in Developing Countries: Results from 11 Household Surveys. Washington, DC: World Bank, Development Research Group (Social Protection Discussion Paper, 0539). Filmer, D. (2008). Disability, poverty, and schooling in developing countries: Results from 14 household surveys. Economic Review, 22, 141–63. Inter-Agency Commission (1990). World Conference on Education for All: Meeting Basic Learning Needs. 5–9 March, Jomtien, Thailand. Little, A. (2011). A Review of Major Global Initiatives Related to Education for All (EFA) and the Education-specific Millennium Development Goals (MDGs). EFA Global Partnership team. Paris: UNESCO. Manzurek & Winzer (2015). Intersections of education for all and the convention on the rights of persons with disabilities: Explaining the conflicting international cadences of inclusive schooling. International Dialogues on Education: Past and Present, 2, 85–93. Rose, P. (2015). Three lessons for educational quality in post-2015 goals: Clarity, measurability and equity. International Journal of Educational Development, 40 (January), 289–246. Rousso (2003). Education for All: A Gender and Disability Perspective. Background paper prepared for EFA Global Monitoring Report 2003/4. The Leap to Equality. UNESCO. UNESCO (2000). The Dakar Framework for Action: Education for All: Meeting Our Collective Commitments: Including Six Regional Frameworks for Action. Paris: UNESCO. UNESCO (2004a). EFA Global Monitoring Report. Gender and Education for All: The Leap to Equality. Paris: UNESCO. UNESCO (2004b). The Right to Education for Persons with Disabilities: Towards Inclusion. Conceptual paper, December. ED/BAS/EIE/2004/1 REV. Paris: UNESCO. UNESCO (2005). Education for All. The Quality Imperative. Paris: UNESCO. UNESCO (2006). EFA Global Monitoring Report. Literacy for Life. Paris: UNESCO. UNESCO (2007). EFA Global Monitoring Report. Strong Foundations. Early Childhood Care and Education. Paris: UNESCO. UNESCO (2008). EFA Global Monitoring Report. Education for All by 2015. Will We Make It? Paris: UNESCO. UNESCO (2009). EFA Global Monitoring Report. Overcoming Inequality: Why Governance Matters. Paris: UNESCO. UNESCO (2010). EFA Global Monitoring Report. Reaching the Marginalized. Paris: UNESCO. UNESCO (2011). EFA Global Monitoring Report. The Hidden Crisis: Armed Conflict and Education. Paris: UNESCO. UNESCO (2012). EFA Global Monitoring Report. Youth and Skills: Putting Education to Work. Paris: UNESCO. UNESCO (2014). EFA Global Monitoring Report Teaching and Learning: Achieving Quality for All. Paris: UNESCO. UNESCO (2015a). EFA Global Monitoring Report. Achievements and Challenges. Paris: UNESCO. UNESCO (2015b). Monitoring of the Implementation of the Convention and Recommendation against Discrimination in Education. The Right to Education for Persons with Disabilities. New Delhi: UNESCO. UNESCO (2015c). Incheon Declaration and Framework for Action. Education 2030: Towards Inclusive and Equitable Quality Education and Lifelong Learning for All. UNESCO.

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UNESCO (2016). EFA Global Education Monitoring Report. Education for People and Planet: Creating Sustainable Future for All. Paris: UNESCO. UNESCO (2018). EFA Global Education Monitoring Report. Accountability in Education – Meeting Our Commitments. Paris: UNESCO. United Nations (2006). Convention on the Rights of Persons with Disabilities and Optional Protocol. New York: United Nations. United Nations General Assembly (1948). Universal Declaration of Human Rights. UN General Assembly. United Nations General Assembly (2000). United Nations Millennium Declaration. RES/70/1. UN General Assembly. United Nations General Assembly (2015). Transforming Our World: The 2030 Agenda for Sustainable Development. RES/70/1. UN General Assembly. WHO (2002). Towards a Common Language for Functioning, Disability and Health ICF. The International Classification of Functioning, Disability and Health. Geneva: World Health Organization. Wormnæs (2015). The UNESCO flagship: The right to education for persons with disabilities: Towards Inclusion. In F. Kiuppis & R. S. Hausstatter, Inclusive Education Twenty Years after Salamanca (pp. 102–187). New York: Peter Lang.

Notes 1 http://www.educ.cam.ac.uk/centres/real/researchthemes/qualityteachers/ effectiveteaching/ 2 http://www.asercentre.org/#28tvg 3 https://www.younglives.org.uk/

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Researching Disability and Education: Rigour, Respect and Responsibility Nidhi Singal (University of Cambridge)

Over the last two decades, there has been an increased focus on disability issues. This growing recognition of disability is evident in international and national policy discourses with disability being explicitly mentioned in the Sustainable Development Goals (SDGs) (UN, 2015). Such a focus is even more pertinent, given the complete absence of disability and related issues in the Millennium Development Goals (UN, 2000). These developments are particularly significant, given that global figures indicate an estimated 10 per cent of the world’s population lives with disability (WHO, 2011). More recent evidence suggests that persons with disabilities are twice as likely to live in poverty and often are among the poorest of the poor (WHO, 2011). In more recent years, disrupting this strong cyclical relationship between poverty and disability has become an integral part of the development discourse (DfID, 2001; UN, 2015; WHO, 2011). Education is recognized as one of the most significant pathways in breaking this continued cycle of deprivation. The Global Monitoring Report (GMR) (GMR, 2014, p. 6) poignantly notes that ‘education transforms lives’. The GMR estimates that if all students in low-income countries left school with basic reading skills, 171 million people could be lifted out of poverty, which would be equivalent to a 12 per cent cut in world poverty. Globally, one year of school increases earnings by 10 per cent on average. Additionally, education impacts on positive health prospects (GMR, 2014), fostering individual agency and asserting citizenship (Arnot, Casely-Hayford, & Chege 2012). In his paper, Braunholtz (2007), upon analysing data on exit routes out of poverty, particularly for those who have been in long-term poverty, identifies two important routes, namely high dependency on their own labour (in the absence of financial and material assets) and formal education. Education, he argues, is crucial as it helps individuals improve the quality of their labour and enables higher returns. Not surprisingly, there is a growing appreciation of the pivotal role of education in the field of disability and development (Grech, 2014; Singal, 2017). The SDG 4 categorically states the need to ‘ensure inclusive and quality education for all and promote lifelong learning’. While there is growing acknowledgement of the need

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to provide education for all, there is also a realization that there is little understanding of how best to achieve this. The World Report on Disability (WHO, 2011) notes that the existing ‘lack of data and evidence … often impedes understanding and action’ (p. 263) in the field across various sectors including education. As its final recommendation, the report notes the ‘need to strengthen and support research on disability’ (p. 267). Fundamentally, high-quality research on disability is needed to uphold and achieve the rights of people with disabilities as enshrined in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (United Nations, 2006). Article 31 of the Convention notes research is central to addressing discrimination, changing perceptions, and combating stereotypes and prejudices. It encourages member states to gather research data that can inform policy and monitor progress towards realization of the rights of people with disabilities. The article goes a step further in emphasizing the need for people with disabilities to monitor and evaluate the impact of UNCRPD on their lives and hence advocates for all research being available and accessible. This chapter begins by reflecting on the current status of education for children with disabilities. It then moves on to reviewing the current state of research on disability issues in the field of education, highlighting key trends and gaps in knowledge. Drawing on insights from this analysis, I develop three key themes which I propose ought to support future research on disability and education.

Educational status of children with disabilities: Data woes UNICEF (2013) estimates that there are approximately 93 million children with disabilities; that is, one in twenty children aged under 14 years has a disability. In a report published by WHO (2011), it is suggested that the number of children with disabilities globally may be as high as 130 million (WHO, 2011). This discrepancy in numbers is not uncommon in the field of disability. One reason for the lack of reliability in data is the use of inconsistent definitions of disability and the subsequent impact this has on methodologies and analysis (UNICEF, 2013). There are significant concerns over the reliability of data relating to children with disabilities, specifically around under reporting. The World Report on Disability (WHO, 2011) highlights this issue when it notes that the prevalence of childhood disability ranges from under 1 per cent in Kenya and Bangladesh to about 20 per cent in New Zealand. Over a decade earlier, Robson and Evans (2003, p. 35) based on a comprehensive review of international data sets on children with disabilities concluded: ‘Good data sets do not currently exist. Existing data sets are fragmentary and inconsistent in their definitions of disability. They provide little basis for meaningful international comparisons and, with some exceptions, are of unknown reliability and validity.’ This observation still holds true. Ironically, the issue of inconsistency across data sets and lack of definitional clarity remains the case even for within country efforts (Jeffery & Singal, 2008). Therefore, not surprisingly, there is very little reliable data even on the number of children with disabilities enrolled in primary and secondary schools in Southern contexts. The current estimate most widely used is the one from UNICEF (2014), which states that 90 per cent of children with disabilities in developing economies do not

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attend school. However, what is noteworthy here is the fact that this report does not provide any reference to how this figure was calculated. While the significant exclusion of children with disabilities from the education system cannot be underestimated, the lack of transparency when such figures are used does not instil confidence. A different UNICEF report (UNICEF, 2013) based on findings of the World Health Survey from fifty-one countries reports that 51 per cent of male children with disabilities who attend primary school are estimated to complete their studies in relation to 61 per cent of male children without disabilities. In comparison, 42 per cent of girls with disabilities are likely to complete primary school in relation to 53 per cent of girls without disabilities. This pattern, wherein young people with disabilities are less likely to be in school than their peers without disabilities, is more pronounced in poorer countries. Findings of the Plan survey, which analysed data across 1.4 million children living in thirty different countries, noted that children with disabilities are ten times more likely not to attend school than children without disabilities (Plan International, 2013). Additionally, transition from primary to higher levels of education is extremely challenging. In India, a report published by Singal, et al. (2017) noted that approximately 90 per cent of enrolment for children with disabilities is in elementary level (I –VIII grades) and only 8 per cent at secondary level compared with the total number of enrolments of children with disabilities in formal education. In 2013–2014 school year, children with disabilities accounted for only 0.61 per cent of the total secondary school enrolment. While there are a number of challenges with this data (such as those in relation to identification), the lack of transition from primary to higher levels of education is a key concern across all countries. Across the board, children with disabilities remain the single largest group excluded from schooling (UNESCO, 2015) and those living in lower-income countries are significantly less likely to attend school than those in high-income countries (WHO, 2011). Discussions around educational enrolment figures, even though lacking in reliability, are currently more widely available, compared to an understanding of what happens to these children when they do make it to school. There is little data on how many children actually attend school, their level of participation in these settings, and more crucially, the impact on their learning. Thus, there is very little understanding of the quality and levels of learning achieved by children with disabilities (DFID, 2014). I now turn my attention to a closer analysis of the current status of research on disability and education in Southern contexts.

Current status of research on disability in the field of education In the following section, I begin by discussing some of the dominant trends in educational research on disability issues in Southern settings and how these have been influenced by changing understandings of disability. At the outset, it is important to acknowledge that majority of research studies on disability issues, including in education, have been conducted by either international organizations or academics/ research teams largely based in Northern settings.

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‘Disability’ research, specifically in Northern contexts, Barnes (2001) notes, has been undertaken by various social scientists since the 1950s. However, the focus of these has been primarily on dealing with ‘doctor-patient’ relations, stigma, institutional living and large-scale surveys chronicling the number of persons with disabilities. While these studies have enriched our understanding of disability and related issues, they were nonetheless anchored in a medicalized view of disability – the notion that disability is an individual deficit and that impairments, whether physical, sensory or intellectual, are the main cause of disability and disadvantage. In educational terms, this meant that there was a focus on developing tests which could identify different disabilities that children have and how their behaviour could be modified or managed in specialized classrooms. As Tomlinson (2015) argues, this was a time where professional and practitioner beliefs were based on well-worn ‘theories’ of disadvantage and deficit within individuals, families, and social and racial groups, devoid of any social, political and economic perspectives. This focus underwent a significant shift in the late 1960s and early 1970s with the rise of a strong disabled people’s movement in the UK, among other Northern countries. There was a real push, based on personal experiences and narratives of people with disabilities, that disability is the result not of individual factors but societal conditions. The ‘problem’ was not the person but the social milieu in which he or she was located. Hence, the focus was on understanding barriers that prevented people with disabilities from participating in mainstream endeavours. Thus, in educational research, there was a move towards highlighting the social construction of special educational needs (Tomlinson, 1982). A considerable body of research literature focused on bringing about important systemic changes in school systems to make them inclusive of all children, including those with disabilities. While these broad trends hold for the type of research undertaken in Northern settings, issues of disability in educational research in Southern settings have not had similar progression. Singal (2010) reflecting on the status of disability research in these contexts stated: ‘Research addressing issues of disability in Southern countries is rather limited and tends to be dominated with concerns such as establishing the prevalence of various disabilities and effectiveness of rehabilitation programmes’ (p. 415). Specifically, in relation to research on disability issues in education, Howgego et al. (2014) concluded that issues of teacher attitudes and self-efficacy in relation to inclusive education are over-represented. They noted that of the sixty articles they identified in the area of inclusive education, twenty-three focused on attitudes. In some ways, this is not surprising, given that initial struggles of the inclusive education movement in Southern contexts have focused on addressing attitudinal barriers and delivering key messages to popularize the concept. However, this has also meant the lack of research in many other important areas. A systematic review funded by AusAID, which included literature on the accessibility of education for people with disabilities in both developed and developing economies, found that ‘there have been virtually no studies in the academic literature that have looked at the impact of an intervention to improve accessibility of children with disabilities to formal school settings in low- and middle-income countries in the past decade’ (Bakhshi et al., 2013, p. 28). This review noted a dominance of

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‘commentaries, discussion papers, opinion pieces or reviews’ (p. 28), particularly in the literature on education of children with disabilities in Southern contexts. Thus, there is a significant absence in the literature around issues relating to inclusive learning processes, strategies and outcomes at both teacher education and classroom level. In addition to the lack of insights concerning classroom-based processes, also evident in the literature is little regard to the voices of children/young people with disabilities. Singal (2010) noted a more or less complete absence of thick descriptions of the lives of people with disabilities in the literature. The irony of their exclusion is highlighted in a brief published by the Chronic Poverty Research Centre (2006), which observed: ‘Whilst few research or development organisations would consider working with all male respondents or beneficiaries, it is still common practice to work with only non-disabled people. This is despite recognising that disabled people are disproportionately among those living in chronic poverty’ (n.p.). While engaging with people with disabilities is crucial, providing them opportunities to express themselves when they have been continually excluded is rather challenging. In contexts where people with disabilities are not only marginalized but have also been systematically made invisible in policy and academic discourses, the value of research which attempts to hear their voices is difficult to exaggerate. Finally, there is a need to acknowledge that researchers working on disability issues and those working on broader educational issues have continued to work in parallel with little regard to obvious synergies. Even when researchers have looked at issues of educational development, they have focused on gender, caste, poverty but rarely disability. Analysing the number of articles published on disability in comparative education journals, Brown (2014) noted that of the four journals examined over a thirteen-year period (from 2000 to 2013), the number of articles published which had a focus on disability ranged between 0.81 per cent and 1.26 per cent with most increase from 2007 onwards. Some of the reasons for this absence of evidence are not only to do with the lack of funding but also due to lack of training among researchers, which makes them reluctant to focus on disability. Additionally, Nuwagaba and Rule (2015) note the presence of, what they term as, the ‘fear of doing disability research’ among researchers. Based on a critical analysis of the research ethical review processes in different African countries, the authors argue that the ‘current practice suggests that postgraduate students intending to do research involving participants with disabilities may fear facing this ethical maze’ (p. 5). They note that the uncertainty of the process, the lack of clear guidelines, etc., potentially reduce the number of postgraduate students pursuing studies involving persons with disabilities and eventually result in low numbers and quality of researchers in this area of study. Consequently, there is a reduction in knowledge generation regarding disability issues and further marginalization of people with disabilities as ‘there is no new evidence on which to base decisions that affect them’ (p. 7). The absence of an active and critical academia has been identified as one of the biggest challenges in promoting rigorous research in Southern contexts (Swartz 2014), impacting significantly on knowledge production (Chomba et al., 2014). Acknowledging many of these challenges, it is not surprising that the World Report on Disability (WHO, 2011) identifies the need for promoting research through more focused investments in both human and technical capacity, particularly in Southern countries.

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Moving the field forward At a time when there is a growing emphasis on the need for more quality evidence, it is worth highlighting three important themes that are useful in shaping the future of research on disability issues in education. Each of these three themes – (i) need for research which builds on local realities and priorities, (ii) undertaking more sophisticated research explorations and (iii) forming alliances and networks for research impact – is discussed below.

Need for research which builds on local realities and priorities More recently, powerful accounts written by researchers have begun to highlight the significant disjuncture between research agendas and the priorities that need addressing. Providing a very passionate and reflexive account of her experiences of working with the disability community in post-conflict Sierra Leone, Berghs (2010) highlights the many ways in which researchers and international development community can collude with structures and institutions that exploit people with disabilities. She argued that the research questions she was asked to pose by her international funders did not reflect the immediate needs of people. Research must encompass a nuanced understanding and reflection of sociocultural specificities. This is best exemplified in the following observation by Swartz (2014, p. 149): ‘It is absolutely outrageous that most of what we know about disability issues across the board comes from wealthier countries, when by far the majority of disabled people in the world live in low and middle-income countries.’ More recently, researchers such as Chataika and Mckenzie (2013) have undertaken the task of interrogating epistemological assumptions that researchers bring to the research endeavour, particularly when working in Southern settings. Others have questioned how disability is the legacy of inequality generated by imperialism and sustained through unequal power relations that have left majority of people with disabilities and their families in stark conditions of inequity and deprivation in almost every sphere of life, including health and education (Barnes & Sheldon, 2010; Meekosha & Soldatic, 2011). While such criticality of discourse is seen in the field of disability studies, many of these issues and concerns have remained in the background in research studies focusing on education and disability. Reflecting on the focus and assumptions specifically underpinning educational research and disability in Southern contexts, Singal and Muthukrishna (2014) argue that current discourse in this field tends to be largely monolithic. In such a scenario, not only are the lives of persons with disabilities commonly constructed as backward or as victims of society but their parents are also seen as neglectful and disinterested in their child’s education. Within such homogeneous representations, there is little desire to construct a deeper understanding of the lived realities of children/people with disabilities. To illustrate this point further, it is useful to examine the contrasting ways in which disability is broadly construed in debates in countries of the North and South. In the former, as Goble (2014) notes, disability is primarily constructed in individualistic

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terms. Consequently, the disability movement has focused on the individual and his or her relationship with the state. This is further legitimized through prevailing neo-liberal ideologies. In Southern countries, where more traditional, agrarian and collective values still hold, disability is not merely understood in individualistic terms. Rather, in these contexts, the relational world is much more significant. Thus, it is only by locating the individual in the collective that one is able to develop a holistic appreciation of persons with disabilities in such contexts. In doing so, the endeavour is not to undermine the individual but to acknowledge the role of the family and other collective units. Finally, given the paucity of state-driven interventions in most of these countries, the family and community take on a more pivotal role. Rather pertinently, in contexts where individual/personhood is strongly linked with family identity, Das and Addlakha (2001, p. 527) propose the notion of ‘connected body-selves’. Here the presence of a family member with disability has an impact on the life opportunities available to others in the household. Thus, when understanding disability, it is not sufficient to focus on the individual; rather, one needs to also trace the impact on the family unit. So for example, while access to school for children with disabilities is an important concern in research studies, less emphasis is placed on how having a sibling or a parent with disabilities might compromise another child’s schooling and push him or her into ‘adult carer’ roles. The few studies which have accounted for such contextual nuances provide powerful insights. For instance, Hoogeveen (2004) noted a significant education deficit in Ugandan households headed by a disabled person, as children in these households received less education. While this deficit could be attributed to children being pushed into adult carer roles, it could also be due to the reduced ability of the household to afford school fees because of the direct costs of disability. Thus, to the extent that education drives the ability to earn an income in the future, there is a greater likelihood that the ‘currently disabled are more likely to pass their poverty on to their children’ (LwangaNtale, 2003, p. 7). Not only is there an increased likelihood of intergenerational transfer of economic deprivation, but it is also likely to be the case that in managing their dayto-day survival, poor families with a disabled member do not have as much time to build social networks (or have different, possibly truncated ones) and hence have fewer mechanisms of support and limited social capital (Singal et.al., 2011). Reinforcing this need for addressing contextual sensitivities, Owusu-Ansah and Mji (2013) call upon researchers to include indigenous knowledge in the design and implementation of research on disability issues. They note that for research to be empowering and meaningful, it must, of necessity, include ‘African thought and ideas’ (p. 2). There is an urgency to redress this knowledge gap through sensitive research which takes account of local realities. Similar perspectives echo strongly in the field of disability and education, where the research agenda continues to be driven with little regard to the real needs and concerns of local stakeholders. Here some insightful reflections can be garnered from the research discourse surrounding ‘inclusive education’. While the case for inclusive education has been strongly advocated at various international and national policy forums, there is growing discontentment in relation to its efficacy among researchers working in Southern contexts. For example, Le Fanu (2014) makes a strong argument

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for questioning the assumed homogeneity around what inclusion should look like across different countries. He goes on to emphasize the importance of contextualizing the concept of inclusive learning, to critique ‘global inclusionism’, as promoted by UNESCO, and argue instead for ‘grounded inclusionism’ rooted in, and sensitive to, local realities. Researchers such as Armstrong et al. (2011, p. 33) refer to the push towards inclusive education as ‘exhortations of first world agencies, and international donors’, primarily as these proclamations disregard the realities of teachers and schools in many of these contexts. Analysing data gathered from teachers and classroom-based observations in six primary schools in Botswana, Mukhopadhya (2015) observed how ‘teachers were confused about the conceptualisation of inclusive education, its terminologies and practices’ (p. 28). A constant theme among the teacher interviews was the dominance of certain perspectives in the inclusive education debate, where the government was trying to mimic Western policies. He exemplifies this through a quote from a teacher, who stated: ‘Most of the consultant undermine our knowledge and practice, and force us to believe that “West is best”’ (p. 30). In his conclusions, Mukhopadhya highlights the perennial concern facing the field, wherein policies, such as inclusive education, are implemented through a top-down approach, while being completely neglectful of teachers’ indigenous knowledge. Moreover, Singal and Muthukrishna (2014) argue that the focus in majority of the research studies is on what is not happening and what should be done, rather than identifying enablers which can help support the development of effective systems which support diversity. Thus, research which identifies and builds on strategies that are proven to be effective in different Southern contexts is needed. Here an interesting example is seen in the work of Lynch and colleagues (Lynch et al., 2014, 2011) who identify various low-cost efforts which can support the inclusion of children with albinism in Malawi. They discuss in depth the work being undertaken by iterant teachers in supporting children with visual impairment in mainstream schools. In both the projects, the researchers show how working with local stakeholders, encouraging them to share their ‘knowledges’, offers a deeper appreciation of the contextual opportunities and barriers facing different settings. Thus, forefronting local voices with a view towards building on the positives or enablers in the system should be a desirable and valued goal.

Undertaking more sophisticated research explorations Over the last few years, understandings of disability have become far more nuanced. There is growing acceptance that there is no single definition of disability. It is acknowledged that disability is not a static condition and it differs across both temporal and cultural dimensions. Thus, research approaches need to acknowledge that disability is only one part of the identity or experience (Shakespeare, 2006) and that people with disabilities do not exist in a vacuum. Research needs to engage with this fluidity and understand how disability experience unfolds across an individual’s life course. There is a growing call for collecting disaggregated data across many dimensions, such as geography, wealth, sex, age and disability, as this can provide a reliable picture,

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which is essential for planning and adequate resourcing. Given the multidimensional and complex nature of disability, capturing such data is highly problematic. However, recent years have seen significant progress being made by the Washington Group (WG) on Disability Statistics. The WG is a United Nations sponsored City Group which was commissioned in 2001 specifically to improve the quality and international comparability of disability measure. Drawing on the bio-psycho-social approach proposed by the International Classification of Functioning, Disability and Health (WHO, 2010), it considers disability and functioning as outcomes of interactions between health conditions (diseases, disorders and injuries) and contextual factors. It adopts a neutral language and does not distinguish between the type and cause of disability – for instance, between ‘physical’ and ‘mental’ health. Most importantly, it is universal because it covers all human functioning and treats disability as a continuum rather than categorizing people with disabilities as a separate group. Disaggregated data can help examine, for example, how variables such as gender, poverty and other social characteristics shape access to schooling. Having such insights can allow for the development of effective, targeted interventions to address educational exclusion. In addition to this, we also need more nuanced understanding of teaching and learning processes in mainstream classrooms. In a review undertaken by Srivastava et al. (2015), they noted the limited evidence available on the effectiveness of inclusive learning for children with disabilities. Focused on identifying projects from 2000 to 2010, aimed at making education more inclusive in Southern contexts, they noted insufficient empirical evidence on the effectiveness of these efforts. However, they note how irrespective of this lack of evidence various NGOs and national bodies continue to promote similar approaches. While there is evidence to suggest that teachers are positive about the social aspects of including children with disabilities, they are much more sceptical about the academic benefits (Donohue & Bornman, 2015). A commonly noted concern in the literature is the lack of pedagogical knowledge among teachers in relation to implementing effective teaching strategies for diverse groups of learners. At a time of ‘global learning crisis’ (GMR, 2014), research has an important role to play in holding systems accountable to delivering quality education. Singal and Sabates (2016), based on an analysis of children’s achievement on basic learning in reading, arithmetic and English tests administered as part of the Annual Status of Education Report (ASER) survey in Pakistan, concluded that children with disabilities are least likely to be learning. Findings from the survey showed that across the different types of disabilities, children reported as having moderate to severe disabilities were reported to be at the lowest level of the learning scale. These children were unable to read simple letters or recognize single-digit numbers. The percentage of children with disabilities assessed at this level in the reading task was nearly five times more than those reporting mild or no disabilities. These insights are significant in placing children with disabilities more firmly in the debates on quality of education. Most importantly, we also need to understand the experiences of children and young people with disabilities in a range of educational institutions, if we are to make effective policy decisions. This demands undertaking in-depth qualitative work, focusing on narratives and rich exploration of perspectives and experiences. Choudhuri et al.

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(2005) in an assessment of education for children with disabilities across Bangladesh, Nepal, Vietnam and South Africa consulted a range of stakeholders, including children and young people with disabilities, and concluded: ‘There is definite scope, through further research, for more comprehensive and intensive investigations into how best existing educational systems for disabled children could be improved’ (p. 41). This more sophisticated exploration of issues concerning and shaping the education of children with disabilities continues to be lacking in the field. There is also a pressing need for the systematic inclusion of people with disabilities in the research process as investigators and, more importantly, as the ones posing the research questions and setting the agenda for research. Koistinen (2008), in her research focused on capturing the experiences of young people with disabilities on vocational training and employment in Zambia, used a life history approach. In gathering data for the project, she worked with two research assistants both having ‘learning disabilities’. Reflecting on the experience, she noted that working with life stories offered an opportunity to share real-life experiences and raised important issues around empowerment, participation and inclusion. Nevertheless, the voices of people with disabilities are largely excluded from research. As observed by Kembhavi and Wirz (2009, p. 289), ‘the move from rhetoric to reality is particularly slow in occurring for adolescents with disabilities, whose inputs and voices are largely left out of research and decision-making concerning their lives’. Chappell, Rule, Dlamini and Nkala (2014) discuss how it is possible (and essential) to conduct participatory research with children and youth with disabilities in the South. Taking a reflexive stance, their article raises critical issues that underpin research with youth, in particular examining misconceptions surrounding disabled sexualities in the South African context and the competence of youth with disabilities in undertaking research. The authors conclude that such research, based on strong ethical principles, is very important and significant in terms of the impact it can have. Reflecting on their research they noted that ‘youth with disabilities as co-researchers learnt a considerable amount not only about doing research but also on a range of practical life skills and about themselves and their abilities’ (p. 396). Additionally, the process was mutually informing and reflexive for the researchers themselves. Similar observations were noted in Singal (2010), where the process of research was found to be extremely positive for young people with disabilities who had been offered a unique opportunity to express their feelings and share their perspectives. In parallel, the research team, which had never previously worked with people with disabilities, developed a deeper and more nuanced appreciation of their lives.

Forming alliances and networks for research impact The World Report on Disability (WHO, 2011) highlights the central need to collect data and information to inform national policies on disability in a wide range of places. It notes that collection of data should be the purview of statistical agencies, government agencies, international organizations, non-governmental organizations (NGOs) and disabled people’s organizations. These should be shared through various networks – both within countries and internationally – including via publications in

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academic journals. This drawing together of different data and information can only be done through alliances and strong networks. It is only practical that in an emerging field the potential for impact is more likely to be maximized if the different stakeholders are connected. Therefore, the issue is not simply about doing more research on disability issues in education but also understanding how research insights can be harnessed for impact on policy and practice. However, given that low priority has traditionally been accorded to disability in educational research funding, it is not surprising to see the scarcity of existing evidence. But as we move forward, developing a more coherent agenda for action must be based on rigorous research findings. While this is not something that researchers can simply do on their own, they can form strategic alliances with other key stakeholders. Swartz (2014, p. 5) rightly notes that ‘good research … will not on its own change the world. It needs to be accompanied by sophisticated and strategic activism’. It is fair to acknowledge that not everyone has the same set of skills; that is, activists are not necessarily good researchers, and neither are researchers good activists. However, alliances based on mutual respect and an appreciation of the value of research in advocacy can be powerful. Shakespeare (2006) observes that while focus in disability research has primary been on oppression, more attention needs to be paid to partnerships and alliances. Researchers and Disabled People’s Organisations (DPOs)/NGOs who are willing to work together, showing a commitment to establishing and developing a strategic working relationship, are important in taking the field forward. Interesting examples already exist in the field where international disability organizations such as CBM and Sightsavers successfully fund research centres in established universities in the UK and regularly draw on their findings to shape country programmes. However, much more is needed in bridging this divide. Aniekwe et al. (2012) on examining ‘Academic-NGO Collaboration in International Development Research’ note that while spaces seem to be opening for more engagement between academics and practitioners primarily driven by demands for evidence-based logic and demonstrable impact of research, key challenges exist arising from different perspectives around research, institutional time frames and philosophies, and also different outcome expectations and requirements. Another common issue which is raised in the literature is the concern that a substantial amount of research on disability issues that occurs in the field in Southern contexts is not brought to publication in a form that is necessarily identified by academics as research. Here the main criticism in the field of disability and development is channelled towards NGOs. It is commonly argued that even though very interesting work is undertaken by many of these organizations, there is little documentation and publication of the process. What is important to acknowledge here is the difference in goals and approaches that underpins much of this work. For example, while academic researchers are influenced by the priorities of the academy and its career/promotion incentives, which are highly positively disposed towards publishing in high-status ‘scientific’ journals, NGOs, on the other hand, are working towards achieving behavioural or policy change in a specific community and do not necessarily prioritize knowledge building in the same way as the academic community (Olivier et al., 2016).

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This raises some interesting challenges, wherein NGOs, given their close direct connection with the field, do have rich grey literature and data, but it is very difficult to access many of these publications. Stubbs (1999) noted the difficulties she faced in accessing reports and articles written within local programmes or by local researchers. She elaborates on the challenges involved in physically going and finding such reports and important documentation on the shelves of organizations, rather than these being available in digital forms. In reflecting on what might be done in the future to foster greater collaboration among academics and NGOs, Aniekwe et al. (2012) highlight the need for NGOs to better assert their role as shapers of research agendas, not just as consumers. NGOs and researchers together must engage in demands for access to data and research, more so when they have a stake in its generation and its use. As Albert and Harrison (2005, p. 9) note, ‘The most productive way forward research is to adopt an emancipatory approach that puts disabled people in the forefront but also embraces genuine partnership working with academics or other professionals.’ In addition, there is a significant need for developing greater research literacy on part of NGOs and donors. It is important that they develop critical reading of research processes (data collection and analysis) in order to use research findings effectively. It will also help strengthen what they can demand of research (and researchers), to be realistic of time pressures, etc. Finally, there is a need for researchers to become more skilled in communicating their research findings to a growing body of stakeholders such as NGOs and policymakers at both the national and international level if they are to have any impact on framing evidence-based policy. Albert and Harrison (2005) in writing up their ‘Messages from research’ make a very useful distinction around how researchers ‘should be “on tap” not “on top”’ (p. 8). This is imperative for researchers working in disability-related areas. It is important that researchers are trained to use their expertise in ways that have positive outcomes, challenge the exclusion of people with disabilities and are responsive to their real needs. Stubbs (1999), reflecting on the challenges of undertaking research in a cultural and national context very different from that of the researcher, powerfully argues that ‘development is a continuum from the personal to the global; research can bring the two ends of this continuum together. Spend your time on finding better, more authentic, more integral, more rigorous approaches to research which result in greater social justice and emancipation for all’ (p. 20). This observation holds true even though there have been advances in technology. In addition to this ‘on tap/on top’ distinction, I would like to add the ‘on shelf ’ distinction – research which is left on the shelf and accessible only to a few is not worth pursuing. Meaningful research that can support the inclusion of people with disabilities is needed. Researchers have an ethical obligation to ensure that the research they undertake reaches a wide breath of stakeholders, and this would mean being aware of the pathways through which to get findings heard. Researchers need to be proficient in not only research literacies but also a range of academic literacies so that their messages can be disseminated. Indeed, the ethical dimension of research dissemination needs to be forefronted in current debates and developed upon (Robinson-Pant & Singal, 2013). The role of research in fostering change can no longer be undermined or overlooked;

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however, there continues to be a need to make sure that research (and researchers) is respectful of people and their contexts, while being rigorous in gathering evidence. As disability-related issues are finally making it to the global centre stage, there is an urgent need for educational research to provide direction. However, this will require an indepth appreciation of the realities and concerns of Southern contexts. At a time when global discourse on disability is gaining more prominence, there is urgent need for increased rigour and respect for the local and heightened sense of responsibility among researchers committed to the educational inclusion of children/young people with disabilities.

Summary of key points ●

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Research plays a key role in taking forward the field of disability and education in Southern contexts. The existing body of knowledge largely lacks empirical rigour with only a few rigorous studies, which provide information on how children can be supported in classrooms, what works and if children are learning. In moving forward, researchers need to build on local realities and priorities when framing their research questions, and they need to be mindful of the pressing concerns in the education system. The research approaches adopted should acknowledge the complex intersectionalities of gender, poverty and ethnicity which shape the lives and educational experiences of individuals with disabilities. There is a pressing need to involve people with disabilities as partners in the research process and for a commitment to engage in making sure that research findings are disseminated widely for greater positive impact.

Suggested questions for discussion 1. Why is research in the field of disability and education important in Southern contexts? 2. What can researchers do to make research relevant to the sociocultural and economic realities contexts they are working in?

References Albert, B. & Harrison, M. (2005). Messages from Research. Disability Knowledge and Research (KaR) Programme. London: DFID. Aniekwe, C. C., Hayman, R., & Mdee, A. with Akuni. J., Lall. P., & Stevens, D. (2012). Academic-NGO Collaboration in International Development Research: A Reflection on

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Donohue, Dana K. & Bornman, J. (2015). South African teachers’ Attitudes toward the inclusion of learners with different abilities in mainstream classrooms, International Journal of Disability, Development and Education, 62(1), 42–59. Global Monitoring Report (2014). Teaching and Learning: Achieving Quality for All. Paris: UNESCO. Global Monitoring Report (2010). Reaching the Marginalised. Paris: UNESCO. Available online: http://unesdoc.unesco.org/images/0018/001866/186606E.pdf Goble, C. (2014). Dependence, independence and normality. In J. Swain, S. French, C. Barnes, et al. (Eds.), Disabled Barriers-Enabling Environments (pp. 31–36). London: Sage. Grech, S. (2014). Disability, poverty and education: Perceived barriers and (dis) connections in rural Guatemala. Disability and the Global South, 1(1), 128–152. Hoogeveen, J. G. (2004). Measuring welfare for small but vulnerable groups. Poverty and disability in Uganda. Available online: http://siteresources.worldbank.org/ DISABILITY/Resources/280658-1172608138489/MeasuringWelfHoogeveen.pdf (accessed 3 July 2005). Howgego, C., Miles, S., & Myers, J. (2014). Inclusive learning. Children with disabilities and difficulties in learning. A Learning Guide. Available online: http://www.heart-resources. org/wp-content/uploads/2014/09/Inclusive-Learning-Topic-Guide.pdf Jeffery, R. & Singal, N. (2008). Measuring disability in India. Economic and Political Weekly, 43(12–13), 22–24. Kembhavi, G., and Wirz, S. (2009). Engaging adolescents with disabilities in research. ALTER: European Journal of Disability Research, 3(3), 286–296. Koistinen, M. H. (2008). Understanding Experiences of Vocational Training and Employment for Persons with Learning Disabilities in Zambia: Lessons for the Future. Helsinki: FAIDD. Studies of Finnish Association on Intellectual and Developmental Disabilities. Available online: http://www.kehitysvammaliitto.fi/wp-content/uploads/ mari_koistinen_esite_a4.pdf (accessed 6 February 2008). Le Fanu, G. (2014). International Development, Disability, and Education towards a Capacities focused Discourse and Praxis. International Journal of Educational Development, 38, 69–79. Lwanga-Ntale, C. (2003). Chronic poverty and disability in Uganda. Paper presented at the Staying Poor: Chronic Poverty and Development Policy Conference, Chronic Poverty Research Centre, Manchester. Available online: http://www. chronicpoverty.org/uploads/publication_files/CP_2003_lwangaNtale.pdf (accessed 21 June 2004). Lynch, P., Lund, P., & Massah, B. (2014). Identifying strategies to enhance the educational inclusion of visually impaired children with albinism in Malawi. International Journal of Educational Development, 39, 226–234. Lynch, P., McCall, S., Douglas, G., McLinden, M., Mogesa, B., Mwaura, M. Muga, J., & Njoroge, M. (2011). Inclusive educational practices in Kenya: Evidencing practice of itinerant teachers who work with children with visual impairment in local mainstream schools. International Journal of Educational Development, 31, 478–488. Meekosha, H. & Soldatic, K. (2011). Human rights and the global South: The case of disability. Third World Quarterly, 32(8), 1383–1397. Mukhopadhyay, S. (2015). West is best? A post-colonial perspective on the implementation of inclusive education in Botswana. Korean Educational Development Institute, 12(1), 19–39. Nuwagaba E. L. & Rule, P. (2015). Navigating the ethical maze in disability research: Ethical contestations in an African context. Disability & Society, 30(2), 255–269.

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Olivier, C., Hunt, M. R., & Ridde, V. (2016). NGO–researcher partnerships in global health research: Benefits, challenges, and approaches that promote success. Development in Practice, 26(4), 444–455. doi: 10.1080/09614524.2016.1164122. Owusu-Ansah, F. E. & Mji, G. (2013). African indigenous knowledge and research. African Journal of Disability, 2(1), 3–5 pages. Available online: http://dx.doi. org/10.4102/ajod.v2i1.30 Plan International (2013). Include Us! A Study of Disability amongst Plan International’s Sponsored Children: Full Report. Available online: http://disabilitycentre.lshtm.ac.uk/ files/2013/12/Include-us-full-report.pdf Robinson-Pant, A. & Singal, N. (2013). Research ethics in comparative and international education: Reflections from anthropology and health. Compare, 43(4), 443–463. Robson, C. & Evans, P. (2003). Educating children with disabilities in developing countries: The role of data sets. OECD, Huddersfield, UK. Available online: http:// eprints.hud.ac.uk/id/eprint/475/1/RobsonEducating.pdf (accessed 3 March 2017). Shakespeare, T. (2006). Disability Rights and Wrongs. Oxon: Routledge. Singal, N. (2007). Conceptualising Disability and Education in the South: Challenges for Research. RECOUP Working Paper No. 10. Available online: http://ceid.educ.cam. ac.uk/researchprogrammes/recoup/publications/workingpapers/WP10-NScombined. pdf Singal, N. (2010). Doing disability research in a Southern context: Challenges and possibilities. Disability & Society, 25(4), 415–426. Singal, N. (2017). Education in disability and poverty debates. In M. T. Hughes & E. Talbott (Eds.), The Wiley Handbook of Diversity in Special Education. West Sussex (UK): Wiley Blackwell. Singal, N., De, A., & Khanna-Bhutani, S. (2017). Secondary Education for young people with disabilities in India. Critical analysis of provision under IEDSS. In V. Gupta (Ed.), National Conference on Policy and Planning for Inclusion Education with Focus on Children with Special Needs. New Delhi (India): NUEPA. Singal, N. Jeffery, R., Jain A., & Sood, N. (2011). The enabling role of education in the lives of young people with disabilities in India: Achieved and desired outcomes. International Journal of Inclusive Education, 15(10), 1205–1218. Singal, N. & Muthukrishna, N. (2014). Education, childhood and disability in countries of the South: Re-positioning the debates: An introduction. Childhood, 21(3), 293–307. Singal, N. & Sabates, R. (2016). Access and learning are equally important for children with disabilities. Global Partnership for Education. Available online: http://www. globalpartnership.org/blog/access-and-learning-are-equally-important-childrendisabilities#.Vqm1dw93DiU.twitter Srivastava, M., de Boer, A., & Pijl, S. J. (2015). Inclusive education in developing countries: A closer look at its implementation in the last 10 years. Educational Review, 67(2), 179–195. Stubbs, S. (1999). Engaging with difference: Soul-searching for a methodology in disability and development research. In E. Stone (Ed.), Disability and Development: Learning from Action and Research on Disability in the Majority World (pp. 257–279). Leeds: The Disability Press. Swartz, L. (2014). Five challenges for disability related research in sub-Saharan Africa. African Journal of Disability, 3(2), 6 pages. Tomlinson, S. (1982). A Sociology of Special Education. London: Routledge. Tomlinson, S. (2015). Is a sociology of special and inclusive education possible? Educational Review, 67(3), 273–281.

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UNESCO (2015). Leaving No One Behind: How Far on the Way to Universal Primary and Secondary Education. Policy Paper 27, Fact Sheet 37. Paris: UNESCO. UNICEF (2013). Children with Disabilities: The State of the World’s Children 2016. Paris: UNICEF. UNICEF (2014). Global Initiative on Out-of-School Children: South Asia Regional Study. Paris: UNICEF. United Nations (2000). Millennium Development Goals. Available online: http://www. un.org/millenniumgoals/ United Nations (2006). United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Available online: http://www.un.org/disabilities/convention/ conventionfull.shtml United Nations (2015). Sustainable Development Goals. Available online: http://www. un.org/sustainabledevelopment/ WHO (2010). The ICF: An overview. Available online: https://www.cdc.gov/nchs/data/ icd/icfoverview_finalforwho10sept.pdf WHO (2011). World Disability Report. Available online: http://www.who.int/disabilities/ world_report/2011/en/

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What Gets Measured Gets Done: Collecting Data to Support Inclusive Education for Children with Disabilities Islay Mactaggart and Hannah Kuper (London School of Hygiene & Tropical Medicine)

Introduction This chapter focuses on data collection related to children with disabilities. We will begin by reviewing the different ways that disability has been conceptualized and understood since the beginning of the twentieth century, and how these conceptualizations influenced the way childhood disability has previously been defined and measured. We will explore the historic challenges these different ‘understandings’ have created by comparing studies, countries and time periods, and explain how childhood disability is understood and can be measured using the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) – the prevailing bio-psychosocial model of disability. We will examine the different reasons for why we might be interested in collecting data on childhood disability. For example, wishing to know how many children there are with disabilities in a given geographical area to help us plan educational services, to learn more about the experiences of children with disabilities in school and ensure that their needs are being met or to identify barriers that prevent children with disabilities from attending school and determine how these can be overcome. We will predominantly focus on data related to children with disabilities of school-going age (varying by country, but approximately ages 5 to 17). However, we will also briefly examine the important area of early identification of children with disabilities below school-going age. We will describe the most appropriate approaches for data collection across these different objectives, providing practical examples and links to additional resources. We will also explore some of the common challenges related to the collection of childhood disability data, such as gaining consent, maintaining confidentiality and using data to create meaningful change. Given the focus of this book, we will concentrate on the collection of data on childhood disability in the Global South.

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A brief review of disability Over the last decade, a strong movement has emerged mandating the collection of comparable data on disability, in order to monitor implementation of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and to ensure the full and meaningful inclusion of people with disabilities in their societies. Box 4.1 provides the relevant text from the World Report on Disability (2011), the Sustainable Development Goals (SDGs, 2015) and the UNCRPD (United Nations, 2006, 2015; World Health Organization, 2011). Disability is a complex concept that continues to evolve. As a result, there are enormous variations in how disability, including childhood disability, is measured, which make it difficult to compare across time periods and between countries. In order to collect meaningful data on childhood disability, we need to reach an agreement about what we mean when we talk about disability, before moving on to how it is measured. In this section, we will summarize the prominent models of disability developed over the course of the last two hundred years (the medical, social and human rights models) and the prevailing bio-psycho-social model of disability, which is used to understand disability throughout this book.

Box 4.1 International disability data collection mandates World Report on Disability Recommendation 8: Improve disability data collection (2011) ●

Develop standardized and internationally comparable data collection methodologies based on the ICF

●

Include disability in national data collection efforts such as Census and administrative data, and consider dedicated disability surveys

Sustainable Development Goal 17.18: Data monitoring and accountability (2015) 17.18 By 2020, enhance capacity-building support to developing countries, including for least developed countries and small island developing States, to increase significantly the availability of high-quality, timely and reliable data disaggregated by income, gender, age, race, ethnicity, migratory status, disability, geographic location and other characteristics relevant in national contexts. UNCRPD Article 31: Statistics and data collection (2006) 1. States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention.

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The medical model of disability came to prominence in the mid to late nineteenth century within the broader advancement of bio-medical understandings of health and disease (Bury, 2001). The medical model perceives disability as the presence of a medical condition or impairment, for instance classifying all people who are ‘blind’ as disabled. The medical model does not acknowledge the role that society plays in enabling or preventing people with impairments enjoying a full life (Palmer, 2011). It therefore does not consider, for example, that two different people with the same impairment may have different life experiences depending on contextual factors such as where they live and how supportive their environments are. For instance, Professor Stephen Hawking experienced severe physical impairments as a result of Motor Neurone Disease, but irrespective of this, contributed substantially to the academic world through his groundbreaking work on theoretical physics. It is inconceivable that he would have been able to participate as fully in the world of physics if he had not had access to mobility devices and assistive technology to enable him to communicate, as well as financial security and social support. The medical model does not consider these environmental or personal factors as contributing towards the lived experience of disability. To use another school-based example, a medical model approach would argue that children with disabilities are generally excluded from mainstream schools because of their impairments, not because the school is not set up appropriately to accommodate their needs. The medical model has therefore been rejected by many disabled people’s organizations as ignoring the impact of factors external to the individual such as assistive devices, attitudinal barriers and environmental accommodations on the individual’s lived experience of disability (Gabel & Peters, 2004; Goujon et al., 2014; Palmer, 2011). Consequently, the social model was developed in the UK in the 1970s following a strong reaction to the medical model from Disabled People’s Organisations (Oliver, 1990). Disability is conceptualized in the social model as resulting from society’s failure to respond to the needs of people with impairments or long-term health conditions. In other words, disability is conceptualized in this model predominantly due to the external restrictions placed by society on people with impairments or health conditions through a lack of inclusive services and stigma (Shakespeare & Watson, 2001). If we applied this model to our school example, it would consider a child with a disability to be excluded from school purely because of the inadequacies of the schooling system. The social model is therefore important for highlighting the role that society plays in changing the experience of people with disabilities. However, some criticize this model as giving too little importance to the impact of the person’s underlying impairments (Shakespeare, 2006). For example, if a child has severe brain damage resulting from birth asphyxia, then full participation in education may be impossible to achieve, no matter what educational and (re)habilitation supports are put into place. The human rights model of disability is another approach to conceptualizing disability. At its core is the slogan ‘nothing about us without us’, which argues that full participation is a universal human right. It goes beyond the social model and pointing at barriers to participation, and instead argues for the full participation of people with disabilities as their fundamental right. The UNCRPD was constructed in parallel with the human rights model of disability (United Nations, 2006). It is an international

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human rights instrument that calls upon all countries to respect and ensure the equal rights and participation of all people with disabilities, including Article 24, on the Right to Education. It came into force in 2008, and by September 2016, had 160 signatories and 167 parties, including the European Union. Consequently, ensuring that children with disabilities attend school is not merely a good thing to do but a legal obligation for countries that have signed the Convention. Finally, the ICF is a ‘bio-psycho-social’ model of disability, developed by the World Health Organization (WHO) in 2001, and is seen as a synthesis of the medical and social models, framed within a rights-based agenda (Figure 4.1) (Altman, 2001; Cieza et al., 2002; Gabel & Peters, 2004; Üstün, Chatterji, Bickenbach, Kostanjsek, & Schneider, 2003; Whiteneck, 2006). Looking at this model, a specific health condition could lead to an impairment in body functions or structures. For instance, contracting the infectious disease poliomyelitis can lead to physical impairment. The impairment may also lead to reduced activities, such as difficulties in walking, or with self-care. These limitations in activity can restrict full participation in aspects of society, including going to school. Within the ICF, disability is defined as the umbrella term encompassing impairments, activity limitations and participation restrictions. In addition, the impact of the health condition on the person’s lived experience of disability is not seen to be inevitable in the ICF, but is influenced by a variety of personal and environmental factors. Personal factors include gender, social background and behavioural patterns; and environmental factors include assistive devices, accessible buildings, inclusive laws and policies. In the school example, the child’s gender, or whether they have access to physical rehabilitation, may affect the implication of the health condition on the child’s lived experience of disability, including their ability to go to school.

Health Condition (Disorder or disease)

Body Functions & Structures

Activity

Participation

(Impairments)

(Limitations)

(Restrictions)

Contextual factors

Environmental factors

Figure 4.1 ICF framework of disability

Personal factors

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To put this into further context, the UNICEF’s 2013 ‘State of the World’s Children’ report stated that 100 per cent of primary school-aged children with disabilities in the UK attended school, compared to 64 per cent of girls and 69 per cent of boys with disabilities across West and Central Africa (UNICEF, 2013). The UK is a high-income country with formal inclusive education policies and social support for children with disabilities, which supports their full participation in school. In other settings, there are many potential personal and environmental factors that come together to stop children with disabilities from going to school. These include the attitudes of parents, teachers or other students, whether the school is physically accessible, whether inclusive learning resources or teachers with training in additional teaching needs are available and the child’s health (The United Nations Children’s Fund (UNICEF), 2006). Another example of the ICF definition of disability could be in the case of an infectious disease such as meningitis (a health condition) which could lead to a child acquiring a profound hearing impairment (body functions), which, in turn, could affect their hearing and communication (activity limitations). The consequences of having meningitis may have an impact on the child being able to go to school (participation restrictions) unless he or she has access to assistive devices or possibly sign language training, if required (environmental factors), as well as social support (personal factors). An illustration of what the components of the ICF model mean in practice is shown in Table 4.1. The ICF model therefore recognizes three levels where disability is experienced: the body, the person and the person in the context of his or her community. This view of disability goes beyond the limited medical model, which focuses on impairments only as the cause of disability. At the same time, unlike the social model, it accepts

Table 4.1 Defining the ICF model of disability Component of ICF definition of disability

Definition

Example

Impairments in body function or structure

Impairments in physiological functioning or anatomical parts of the body

Acute muscular weakness and limb paralysis

Activity Limitations

Limitations in the execution of tasks or actions by an individual

Not physically able to walk

Participation Restriction

Problems experienced in involvement in life situations

Child is not enrolled in school

Personal Factors

Inherent factors that influence how disability is experienced by the individual

Child’s gender or social background

Environmental Factors

The physical, social and attitudinal environment in which people live and conduct their lives

Whether the child has access to assistive devices or the school environment is inclusive

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that impairment does play a role in the experience of disability in addition to external barriers. Using this framework, the UNCRPD describes people with disabilities as those who have long-term physical, intellectual or sensory impairments, which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others (United Nations, 2006). In other words, this means that disability arises when people cannot do the things that they want to do or have the right to do because of an interaction between a underlying health condition, personal and environmental factors. Disability is not perceived here as a single, specific entity but on a spectrum and with many attributes. This conceptualization of disability will underpin the rest of the chapter, and will inform the discussion on how data is currently collected on disability.

Why should we collect data on childhood disability? There are several compelling reasons to collect data on disability, beyond the fact that countries that ratify the UNCRPD are, in fact, obligated to. One reason is to estimate how many children with disabilities are in a particular country or region. A second reason is to document the experiences of children with disabilities and identify what their needs are. A third is to establish whether or not children with disabilities have access to education, and whether there are existing barriers and enablers to education. A fourth is to identify children with disabilities at a young age, before they miss out on school, so that they can be best supported in accessing education. Data is therefore needed to address a number of core questions around inclusion of children with disabilities, including those in education, and these are discussed in turn below:

Finding out how many children there are with disabilities An important reason to collect data on disability is to find out how many children there are with disabilities in the community. This information is essential for planning inclusive education or special educational services, which would be impossible without knowing how many children would benefit from them, or what their needs are. Estimating the prevalence of child disability – the percentage of children in the country, who have a disability – is therefore a crucial component of the evidence base. This is a prerequisite before important questions related to education for children with disabilities – such as the barriers and facilitators to school attendance, and ensuring a productive and inclusive education environment for children with disabilities – can be meaningfully explored. It is widely reported that there are approximately 93–150 million children living with disabilities worldwide (UNICEF, 2013). However, it is less widely reported that the 93-million statistic originates from ‘inconsistent, fragmented and partial data’ as part of the 2004 Global Burden of Diseases update over a decade ago (Mathers, Fat, & Boerma, 2008). The Global Burden of Diseases study uses meta-analysis to create global estimates from multiple individual studies. The use of meta-analysis is problematic

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here, because it is subject to differing definitions of disability described earlier in this chapter, and consequently to different methods of disability measurement. For example, a recent global review of childhood disability data sets by Cappa et al. (2015) showed that the national prevalence of childhood disability varied from 1 per cent to 48 per cent across settings, largely because of the variation in tools, methods and definitions used (Cappa, Petrowski, & Njelesani, 2015). Similarly, the 150-million statistic derives from the 2006 UNICEF State of the World’s Children report, which does not provide the source of this figure (UNICEF, 2006). Moreover, epidemiological transition, including declining under-five mortality rates and increasing global coverage of neonatal services, suggests that the proportion of children living with disabilities globally may be increasing, which is not captured by these dated estimates. Consequently, these figures should be treated speculatively while updated data is urgently needed. There are different approaches that can be used to collect this information on childhood disability within the overall framework of the ICF. One way is through routine population-level data collection on disability, for example via a national census. This method has the advantage of collecting data on the entire population. The downside is that conducting a census is costly and resource-intensive, and can often only be carried out once every ten years. Moreover, including a measure of disability in the census will depend on the level of interest of a country’s National Statistics Office in disability, and is not yet a universal obligation. Another limitation of censuses and other very large surveys is that they are often highly restricted in the number of questions that can be included. With regard to disability, it is often only possible to include single questions such as ‘Do you have a disability?’ (Hartnett, 2000). Given the complexity in defining disability, this measure is likely to be inadequate, as will be discussed later in this chapter. Another approach to collecting data on childhood disability is to conduct a survey on a representative sample of a population. Conducting a survey is less costly than a countrywide census, and provides the scope for important in-depth analyses both related to important attributes of childhood disability (e.g. aetiology and severity of the underlying impairment) and the situation of children with disabilities compared to children without (such as enrolment rates or absences from school). However, given the relatively low expected prevalence of childhood disability (5.1 per cent using the aforementioned ‘speculative’ global estimate), such surveys can still require relatively large sample sizes and consequently a substantial resource commitment to provide robust results. School screenings are an example of these types of surveys and have previously been used to estimate the prevalence of impairments in different settings. For example, a recent study by Aghaji et al. (2017) documents vision and hearing screening among children in South East Nigeria (Aghaji, Bowman, Ofoegbu, & Smith, 2017). However, school-based surveys will exclude children with disabilities who do not attend school and are less common than before. An alternative option is to use the Key Informant Method (KIM) to estimate the prevalence of childhood disability. Key Informants are selected from the community on account of their social capital, including their knowledge of, and respect from, their community peers (International Centre for Evidence in Disability (ICED), 2015). Key Informants may include teachers, religious leaders or community health workers, who

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are often involved on a voluntary basis. Key Informants are given sensitization training on disability and training on the identification of specific impairments in children (e.g. visual impairment). They then return to their communities to identify children who they suspect may have disabilities, using a flip chart to assist them in correct identification. Once identified, children are invited to multi-disciplinary assessment camps, where they are examined by teams including paediatricians, nutritionists and education specialists to assess whether they have a disability and the nature of the underlying impairment. All children needing services are then provided with followup support. The number of children with disabilities identified through the KIM in a given population can also be used to estimate the prevalence. Instead of conducting a survey door-to-door, the strength of this approach is the effective identification of children with disabilities directly within an included community, therefore using fewer resources and less time. A recent study in Bangladesh compared a KIM with a conventional population-based survey (Murthy et al., 2014). The study found that KIM was a quarter of the cost of the conventional survey and produced valid estimates for physical impairments, visual impairments and epilepsy, but not hearing impairments (Murthy et al., 2014). To summarize, data is therefore needed to estimate how common childhood disability is, and there are different approaches that can be used to generate this information. These include population-based surveys of child disability, school screenings or community case-finding. Box 4.2 (below) provides examples of practical resources in this area.

To understand the experience of children with disabilities Another important reason to collect data on childhood disability is to compare the experiences of children with and without disabilities in order to understand the support

Box 4.2 Extra resources Resources Population-based surveys of childhood disability: ●

●

United Nations Disability Statistics Programme homepage: http://unstats.un.org/unsd/demographic/sconcerns/disability/ UNICEF Multiple Indicator Cluster Survey Website: http://mics.unicef. org/

Key informant methodologies: ●

Using the Key Informant Method Working Guide: http://disabilitycentre. lshtm.ac.uk/using-key-informant-method-working-guide/

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requirements they may have, and to ensure that all children can fully participate in society – particularly in regard to education. Data disaggregation, as this is called, where standard metrics such as educational status are compared between children with and without disabilities, is advocated by both the UNCRPD and the SDGs. Monitoring inclusion in this way will help us to see where extra efforts are needed to achieve the full and equal participation of children with disabilities with their peers, and to ensure the SDGs can be achieved for all children. Collecting data on children with and without disabilities can therefore help us to understand the impact that disability has on the lives of children, for instance, in relation to their access to and their experiences of education. Research suggests that children with disabilities are less likely to attend school, more likely to miss days of school and less likely to advance to secondary school than children without disabilities across many different countries (Kuper et al., 2014). Moreover, among children with disabilities who are in school, negative or unsupportive school experiences have also been reported. This includes higher rates of physical and sexual school-based violence experienced by girls with disabilities compared with girls without disabilities, limited human and physical resources to meet additional needs of children with disabilities and lower academic attainment than children without disabilities (Devries et al., 2014; International Centre for Evidence in Disability (ICED), 2014a, 2014b). All of this information is gathered by comparing the frequency of these issues (e.g. school attendance, violence) among children with and without disabilities to see whether there are any differences that can be attributed to disability. This data is needed because services and policies that meet the needs of the population must be designed based on evidence on the population’s need. Standardized and consistent data collection on the number of children with additional needs in educational systems, what those needs are and whether or not these needs are being met, are crucial to achieve this. This is of particular importance in the context of the Global South and resource restrictions that require careful management to meet the educational needs of all children. In addition, this information is needed to identify which interventions and services, from an extensive range, may be beneficial to an individual child. One mechanism to collect data on enrolment and experience of children with disabilities in education is via administrative data sets such as Education Management Information Systems (EMIS). EMIS refers to a network of linked spreadsheets or databases managing administrative educational data such as student attendance and grades. EMIS has been promoted by organizations including the United Nations Educational, Scientific and Cultural Organization (UNESCO) and UNICEF to increase the feasibility and utility of educational data collection (UNICEF, 2014). Disability status and data related to educational needs can be entered into EMIS, as has been done in Namibia and India. Moreover, this data can also be aggregated and used to determine progress against set indicators and targets at multiple levels, for example, enrolment of children with disabilities by school, region or country. Unfortunately, most countries using EMIS are not routinely collecting data on disability, and among those that do, the quality of the data collected varies substantially (Sharma, Forlin, Sprunt, & Merumeru, 2016; UNICEF, 2014). This presents a missed opportunity in terms of the collection of important data on childhood disability. International

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organizations accept that the capacity of teachers and school administrators to routinely enter information in a consistent and complete way in EMIS can be limited, and that increasing their capacity to do so is a priority for education sectors in the Global South overall (UNICEF, 2014). Increasing this capacity should include training and knowledge transfer on the importance of collecting data on child disability. Data on childhood disability can also be instructive in evaluating the school experience of children with disabilities, compared to children without disabilities. This addresses the ‘participation restrictions’ component of disability and can highlight the attitudinal, physical or technical barriers to learning that may prevent children with disabilities from full inclusion in education. For example, this includes the attitude of teachers and other students, protection from violence, the availability of accessible toilets, accessible learning spaces and accessible recreational spaces, and the availability and knowledge of teachers who are trained in inclusive educational practices. This type of information is best captured through quantitative or qualitative school-based surveys that capture in-depth information on the child’s experience, rather than through EMIS or other administrative data sets. In particular, school surveys can focus on the heterogeneity of disability experienced by children related to the type and degree of impairment(s) they have, as well as demographic factors that may influence their experience, such as their gender, socio-economic status or ethnic background. Box 4.3 provides further reading on the use of administrative data and conducting schoolbased surveys of educational experience among children with and without disabilities.

Finding out how many children with disabilities don’t go to school and why The previous section explored how data can be collected on children with disabilities within the education system, but what about children who are outside of the system?

Box 4.3 Extra resources Resources UNICEF webinar and booklet on EMIS and children with disabilities: http:// capacity4dev.ec.europa.eu/disability-and-development-network/blog/unicefswebinar-and-booklet-education-management-information-systems-andchildren-disabilities School-based surveys: ●

●

Peer-reviewed paper on violence against primary school children with disabilities in Uganda in school-based survey: http://bmcpublichealth. biomedcentral.com/articles/10.1186/1471-2458-14-1017 Guidance for consulting with children and young people with disabilities: https://plan-international.org/publications/guidelines-consulting-childrenand-young-people-disabilities

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As highlighted below, the limited data available suggests large gaps between the proportion of children with and without disabilities attending school in the Global South. Collecting data on childhood disability in the community can also help us to understand why certain children with disabilities do not go to school. Surveys can highlight the large differences in the proportion of children with disabilities enrolled at school in the Global South, compared to children without disabilities. Filmer (2008) reviewed the data from fourteen nationally representative household surveys in twelve countries and found that children with disabilities were nearly always substantially less likely to be enrolled at school than their peers (Filmer, 2008). Similarly, Kuper et al. (2014) estimated that children with disabilities were between five and twenty times less likely to be enrolled in school compared with children without disabilities in twenty-three out of thirty countries surveyed (Filmer, 2008; Kuper et al., 2014). Data on disability can also be used to highlight inequalities in educational access among children with disabilities in a given context. For example, surveys have shown that children with learning or communication impairments tend to have less access to education than other children with disabilities (Kuper et al., 2014; Le Fanu, 2014). Barriers to education for children with disabilities are diverse and may include: ●

● ● ●

●

Stigmatized cultural expectations promulgated in the attitudes of parents, teachers or other students The physical accessibility of the educational environment Lack of accessible transportation to and from school The availability of inclusive learning resources and teachers adequately trained in inclusive methods

The child’s health

(International Centre for Evidence in Disability (ICED), 2014b). Systematic documentation of barriers, and conversely the factors that enable meaningful access to education for children with disabilities, is essential in the development of appropriate, inclusive educational policies that meet the needs of all children. Qualitative methods that capture the complexity of multiple or interrelated factors that impact on access to or experience of inclusive education among children with disabilities are also important. For example, Banks and Zuurmond (2015) explored barriers and enablers to education among children with disabilities in Malawi using in-depth semi-structured interviews directly with children themselves, as well as with their caregivers and (among those enrolled) their teachers. The findings identified core barriers related to fear of violence, ongoing health issues, physical access to and within the school, associated costs of attendance (e.g. private transportation), and capacity of the school to meet the child’s needs and provide a meaningful education (Banks & Zuurmond, 2015). Such rich data can be extremely useful in guiding policies and developing plans that are reactive to the heterogeneous interplaying factors related to exclusion from education. Box 4.4 provides further resources on quantitative and qualitative techniques for collecting data on barriers and facilitators to education among children with disabilities.

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Box 4.4 Extra resources Resources UNICEF/Washington Group Question Set on Inclusive Education: ●

Washington Group on Disability Statistics Homepage: http://www. washingtongroup-disability.com/

Qualitative methods: ●

●

Report on barriers and enablers to inclusion in education for children with disabilities in Malawi: http://disabilitycentre.lshtm.ac.uk/files/2014/07/Report-on-inclusion-ineducation-for-children-with-disabilities-in-Malawi_FINAL_large-print_1.pdf

Identifying children with disabilities early, before they miss out on school Collecting data on childhood disability can also assist early intervention for children with disabilities, which is important for maximizing their functioning and thus improving long-term quality of their lives (Campbell et al., 2014). In high-income countries, antenatal screening and regular postnatal and infant health administration help to identify children with disabilities from an early age. Teachers in countries like the UK and Australia are often also trained to identify additional learning needs in young children entering school (Oberklaid, Baird, Blair, Melhuish, & Hall, 2013). In the Global South, early identification of children with disabilities and the assessment of their needs is much more complex, as routine health assessments are less common and many children with disabilities do not ever begin school. The KIM described above, or other types of antenatal or community-based interventions (such as Pakistan’s Lady Health Worker programme, or India’s ASHA workers), can be used to identify children with disabilities at an earlier age. The box 4.5 below provides further reading on tools to measure early childhood development.

Challenges: How do you measure an evolving concept? As we have explored in this chapter, ‘disability’ is a complex and evolving concept. The most commonly used definition of disability is stated in the UNCRPD: ‘Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’. The ICF definition of disability is aligned with the UNCRPD, but focuses on disability as an umbrella term, covering impairments, activity limitations and participation restriction. A further complexity is that there is a broad continuum of development experienced throughout childhood, and measures used must be able to appreciate this diversity.

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How then can we measure this evolving and complex ‘umbrella term’ in a meaningful way when collecting data on childhood disability? The available options for measuring childhood disability include the use of singleitem questions, assessment of functioning, attainment of developmental milestones and measurement of impairments, which are described in turn below.

Using a single question to measure disability One approach to measuring disability is to ask people whether they view themselves as being disabled or as having a disability, or in the case of a child, whether the primary caregiver considers the child to have a disability. For instance, the Zambia census in 1990 asked each person ‘Do you have a disability? Yes/No’. This is the approach used in most large-scale data collection exercises, such as national censuses, or health or educational administrative data (see Box 4.6 for examples). It is rapid and takes up little space in a large data collection exercise. The major drawback is that it will substantially underestimate the prevalence of childhood disability for a number of reasons. People may feel that there is shame or stigma in labelling a child as having a disability, and so they avoid affirming this. In addition, the child (or the caregiver answering on their behalf) may not consider themselves to have a disability, particularly if he or she has a hidden or mild disability (Mont, 2007; Palmer, 2011). The single question is therefore likely to result in a narrow definition of disability which excludes many children and is not compatible with

Box 4.5 Extra resources Resources ●

Review of cross-culturally validated tools to measure early childhood development: https://bernardvanleer.org/ecm-article/measuringdevelopment-children-birth-age-3-population-level/

Box 4.6 Disability survey question examples Single Census/Survey Questions on Disability Q:“Do you have a disability?” Response Categories: 1)Yes 2) No [Source: Zambia Census 1990]

Q:“Do you have (serious) difficulty in moving, seeing, hearing, speaking or learning which has lasted or expected to last 6 months or more?” Response Categories: 1) Yes, all the time 2) Yes, sometimes 3) No [Source: Uganda National Household Survey 2005/2006]

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the broad understanding of disability within the ICF. It is therefore recommended that direct questioning not be used to measure the prevalence of disability. We can illustrate this point by taking the example of two population-based surveys conducted in Uganda in 2006. The National Household Survey (NHS) reported an all age prevalence of disability of 7 per cent using a single question to measure disability (see Box 4.6) (Uganda Bureau of Statistics National Data Archive, 2006). By contrast, the Demographic and Health Survey (DHS) undertaken in the same year used six questions related to reported functional limitations in core domains. For example, asking whether the participant had difficulties moving or seeing. The DHS reported a prevalence of 20 per cent in those aged 5 and above, which is much higher than the NHS, despite both being captured among the same population in the same year (Statistics & MEASURE/DHS+, 2007). More in-depth questions therefore produce higher estimates of disability than a single question. Notwithstanding the above caveats, single-question data on disability can still provide useful information in some circumstances. For example, Plan International collects annual data on 1.4 million children registered in their sponsorship programme across forty-nine countries. In 2014, Kuper et al. analysed a subset of these data related to almost a million children across thirty countries, using the single caregiverreported question ‘Does the sponsored child have an impairment/a medical condition that can lead to disability?’ Children with disabilities were compared to those without disabilities and found to be up to twenty times less likely to attend school (Kuper et al., 2014). This evidence provided a strong evidence base for Plan’s inclusive education advocacy, although the data on the actual prevalence of disability in children was not considered to be as robust due to the issues on using a single question discussed above.

Self or proxy reported limitations in functioning A second approach is to measure disability is through self-reported functioning; that is, asking people whether they experience difficulties in different basic activities such as seeing, hearing or walking. The most comparable international estimates of childhood disability are from a child-functioning module adopted by twenty-six countries in the third round (2005– 2008) of the UNICEF Multiple Indicator Cluster Survey (MICS). The word ‘disability’ is not used in any of the questions in the module, which was designed to identify children aged 2–9 years at risk of acquiring a disability. Parents instead responded to questions about their child in the domains of intellectual impairment, developmental delay, physical impairment, vision and hearing and seizures (Durkin, Hasan, & Hasan, 1995). Using this approach, the percentage of children aged 2–9 who screened positive ranged from 3 per cent in Uzbekistan to 48 per cent in Central African Republic (UNICEF, 2008). However, the original authors of the tool have previously cautioned of up to 300 per cent over reporting of disability when using it as a screen, and recommend the need for a second-stage assessment to verify or reject findings (Durkin et al., 1995). Several additional self-reported tools have been introduced to measure childhood disability, including the Rapid Assessment of Disability (RAD) child module and the World Health Organization’s Disability Assessment Schedule

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(WHODAS 2.0), although neither of these has been extensively validated or widely used (Centre for Eye Research Australia and Nossal Institute for Global Health, 2013; Scorza et al., 2013). More recently, in the last five years, UNICEF has partnered with the Washington Group on Disability Statistics to develop a parent-reported module to identify children with functional difficulties (Box 4.8). This tool captures difficulties across fourteen domains (Box 4.7). Functional limitations are reported along a continuum from ‘no difficulty’ to ‘some difficulty’, ‘a lot of difficulty’ and ‘cannot do’. It is designed to be used in population-based surveys, but would be equally useful in EMIS or other big data collection efforts. The module is suitable for children aged 2–17 and is designed to be caregiver reported, with age-specific variations of questions to account for the continuum of childhood development (Crialesi, De Palma, & Loeb, 2015). The module is still undergoing further refinement, following several rounds of rigorous cognitive testing (i.e. testing that the questions are understood as anticipated by participants). A recent field test in Cameroon and India identified 2.5 per cent of children in Cameroon and 2.0 per cent in India as having at least ‘a lot of difficulty’ in any basic domain using this module (Mactaggart, Cappa, Kuper, Loeb, & Polack, 2016). There are no other data sets with which to compare these findings, but the similarity of results across the two settings suggests that the tool is able to provide reliable estimates of childhood disability. The above methods are mostly used to categorize people as having or not having a disability. However, because they ask about level of difficulty along a continuum, they also reflect the continuum of disability as it is experienced by different people. For example, the difference between having some difficulty seeing and being unable to see. The Model Disability Survey (MDS) provides another approach to measuring disability that explicitly considers disability across the continuum from low to high levels of severity. This is a general population survey tool developed by the WHO

Box 4.7 UNICEF module functional domains Functional Domains in the UNICEF/WG Child Functioning Module Seeing

Remembering*

Hearing

Feeling worried/sad*

Walking

Controlling behaviour

Self-care*

Completing a task*

Understanding

Accepting change*

Being Understood

Getting along with other children*

Learning

Playing

*children aged 5–17 only

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that provides detailed and nuanced information on the lives of people with disability (Box 4.8). It is grounded in the ICF model and therefore views disability as the outcome of interactions between a person with a health condition and various environmental factors. The individual questionnaire of the MDS takes approximately twenty minutes to be completed and includes sections on: -

Capacity (i.e. how a health problem affects how people function in multiple domains), Performance (i.e. how people actually function in multiple domains given health problems and environmental factors), - Environmental barriers and facilitators.

-

Metric scales of capacity and performance can be built for the sample on which the data is collected using statistical analysis, and participants who complete the questionnaire are each given an individual capacity and performance score. For example, based on twenty-five questions related to functioning performance (such as ‘How much of a problem is getting out of your home for you’), a single ‘person ability’ score can be derived (Sabariego et al., 2015). The distribution of these scores for the population of interest shows the range of disability in the study sample, from low to high levels. The difference in the proportion of people with severe problems in the capacity and performance scales shows the extent to which further interventions are needed in order to maximize performance and thereby reduce the level of disability. The environmental barriers and facilitators module helps to identify where these interventions may be best targeted. The MDS is currently targeted at adults, but a child module will be developed. A shorter set of the MDS is currently being developed and tested, and will be approximately twenty minutes long. The MDS is best suited for use in in-depth studies, focusing on disability as a core area of interest, rather than for use in a census or surveys that do not have disability as the main focus. Statistical input will also be required in the development and interpretation of the three scales, which are developed using a statistical method known as Rasch analysis.

Reported or observed early childhood developmental delay Screening tools for early childhood development are commonly used in high-income settings by paediatricians and other health professionals to assess delays in developmental

Box 4.8 Extra resources Resources ●

●

UNICEF/Washington Group module on child functioning: https://data. unicef.org/topic/child-disability/child-functioning-module/ WHO Model Disability Survey Website: http://www.who.int/disabilities/ data/mds/en/

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milestones from a very early age. This screening allows early identification of children with disabilities, so that the child and their caregivers can be provided with appropriate guidance and support throughout early childhood and in the transition to both preprimary and primary education (Radecki, Sand-Loud, O’Connor, Sharp, & Olson, 2011). Many different tools – such as the Ages and Stages Questionnaire and the Parent Evaluation of Development Status (PEDS) – have been developed and extensively validated to assess development compared to normative milestones in the population of reference (Glascoe, 1999). These tools can incorporate both reported progression by a primary caregiver and behaviour as observed by a clinical professional. In the Global South however, routine infant screening by healthcare professionals can be inconsistent or absent. Furthermore, cultural differences mean that core domains may differ across settings, and tools have rarely been adapted to capture these variations (Brothers, Glascoe, & Robertshaw, 2008). Low parental literacy levels and payment for use of some tools can further limit their utility in the Global South. The Guide for Monitoring Child Development (GMCD) and the Malawi Development Assessment Tool (MDAT) are two tools that have recently been developed to address this need. The GMCD was designed in Turkey and has recently undergone validation testing in Turkey, India, South Africa and Argentina. It is a short, pre-coded primary caregiver response interview and was developed to support assessment of children from birth to three-and-a-half-years old. Items in the GMCD address three interlinked components: (1) monitoring development, (2) supporting development and (3) managing developmental difficulties (Ertem et al., 2008). Similarly, the MDAT was developed by a team of researchers as a culturally appropriate developmental assessment tool for use in rural Africa contexts (Gladstone et al., 2010). The MDAT contains a mixture of primary caregiver reported and observed items, and takes approximately an hour to deliver by a trained interviewer.

Objective impairment screening A different approach to measuring disability is to objectively assess clinical impairments, for example, measuring a child’s vision using an E chart to test for visual impairment. Impairment data in isolation are not a proxy for disability, as this data does not capture the impact of the impairment on the child’s functioning and participation as incorporated into the ICF definition of disability. Two children with the same visual impairment, for example, may have very different experiences of disability depending on whether they have access to corrective glasses to aid their reading or not. However, the assessment of impairment may be more informative than using self-reported tools in planning specific services and interventions to support children with disabilities, particularly in education. Using the example above, the appropriate intervention to maximize a child’s learning would be different for a child with uncorrected refractive error (who needs glasses) and a child with a retinopathy of prematurity (who needs medical intervention and/or rehabilitation), and this information is only apparent through the focus on impairment screening and clinical determination of cause. Up until recently, impairment screening has been relatively expensive, as it has depended on the use of complex equipment and the presence of clinical specialists.

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Recent innovations in mobile data collection for some impairments, however, have made these techniques more accessible, as described below.

Hearing The most common way of testing for hearing loss is through Pure Tone Audiometry (PTA) (Smith & Mackenzie, 1999). Here, a machine called an audiometer makes sounds at different volumes and frequencies, and the person listening through headphones indicates whether they have heard these sounds, for each ear separately. This process helps to determine whether someone can hear well or has a hearing impairment in one or both ears. The severity of hearing impairment is then categorized via predefined thresholds. The tester is not necessarily a clinician, but does require specialized training. Several Android applications have recently been developed in a bid to make hearing impairment screening cheaper and more widespread. Swanepoel et al. (2014) have validated the results of the hearScreen™ application as an alternative to using a field audiometer among a cohort of 162 school children in South Africa, and other applications for use on both Android- and Apple-operated products are under development (Swanepoel, Myburgh, Howe, Mahomed, & Eikelboom, 2014). These mobile tools will reduce the cost and increase the feasibility of school-wide or population-wide screening, particularly in the Global South. There are still some difficulties in assessing hearing impairment however. There is some disagreement about which thresholds to use to classify mild, moderate, severe and profound hearing loss, and it is unclear whether these cut off points should be different for adults and children. As a result, there is wide variation in cut-offs used, which makes comparison between studies difficult. In addition, different techniques are needed to measure hearing loss in young children or babies, as PTA can only be conducted with children who can understand the protocol and respond when they hear a noise. These other techniques – such as auditory brain stem response – are often more expensive and may require highly trained technicians. Finally, the cause of hearing loss needs to be determined through an ear examination by a clinician, and often through further testing using different (and again often expensive) equipment.

Vision Visual acuity (the clarity of vision) is the predominant measurement approach for assessing visual impairment. Different tools are available, and most of these test the person’s ability to identify target characters of varying sizes at a defined distance. These characters can be letters (e.g. Snellen chart), characters (e.g. Tumbling-E chart) or pictures (e.g. Lea symbols), depending on the age and level of literacy of the group being examined. Lea symbols in particular have been shown to be reliable even for children as young as three years (Kvarnström & Jakobsson, 2005). Different methods should be used to test the vision of very young children. Preferential looking (inferring that a lack of preference for looking at complex over dull scenes demonstrates visual impairment) is recommended for children approximately

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0 to 3 years, or those who are otherwise unable to respond to prompts using recognition acuity tests (e.g. due to cognitive ability). Chandna and Gilbert (2010) recommend a combination of parental reporting and a basic diagnostic assessment of the infant’s ability to fix and follow toys, lights or their caregiver as he or she moves around the room (Chandna & Gilbert, 2010). This is formalized using methods such as the Cardiff Acuity Test (CAT) (Adoh & Woodhouse, 1994). Several mobile applications have been developed to measure visual impairment. One of these is Peek Acuity, which allows visual acuity testing through a mobile app. It has been shown to be as accurate as the gold standard LogMar methods, and has now been tested for use in school screening in Kenya (Bastawrous et al., 2015). As with hearing impairment, measurement of visual impairment can be carried out by a non-clinical technician, but a clinical examination is needed to determine the cause of an impairment.

Muscular-skeletal impairment (MSI) There are fewer validated tools to screen for muscular-skeletal impairments (MSI) than there are for the assessment of sensory impairments (vision and hearing). The reason for this is possibly due to the absence of a clear and agreed definition of MSI, and the broad range of functions this term encompasses ranging from missing one finger to full body paralysis. Moreover, distinguishing whether a child is unable to perform a function because of physical limitations, or cognitive or behavioural difficulties, is particularly complex without the involvement of qualified assessors. The Rapid Assessment of Musculoskeletal Impairment tool was developed for use in a population-based survey in Rwanda (Atijosan et al., 2008). The tool includes a short set of six screening questions which ask about any difficulties a child has using their musculoskeletal system, and whether they use any mobility aids, and can be administered by a non-clinical fieldworker. A structured diagnostic assessment is completed by a trained physiotherapist or physiotherapy assistant for all those who answer ‘yes’ to at least one of the screening questions. The diagnostic assessment includes observations of ability to perform specific physical tasks and assessment of the diagnosis, area affected, aetiology, severity and what amount of treatment the child requires. It requires only basic props such as bowls, rope and coins. The tool is appropriate for use in all ages (children under 5 are screened via proxy), and definition of Musculoskeletal Impairment status (none, mild, moderate or severe) is informed by categorizations aligned with the ICF.

Intellectual impairment A range of screening tools that are appropriate for use in the Global South are available to identify children at risk of intellectual impairment (Robertson, Hatton, Emerson, & Yasamy, 2012). Robertson et al.’s review identified thirty-eight articles related to screening for cognitive impairment and developmental delay, with the majority referring to relatively simple screening measures that can be administered by trained interviewers without medical backgrounds via parental report or simple diagnostic

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assessment. Many of these are recommended within overall early intervention screening, such as the aforementioned GMCD and the MDST, or part of broader screening tools such as the Ten Questions tool discussed earlier in this chapter (Robertson et al., 2012). A core point to remember here is that any screen for intellectual impairment must be relevant to the context at hand, and that ultimately there is no universal test that countries can use without adaptation (Tomlinson et al., 2014).

Mental Health disorders Mental health disorders are defined by the International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10) as disorders of psychological development (World Health Organization, 2004). Despite estimates that mental health disorders affect between 10 and 20 per cent of children and adolescents worldwide, it remains a very under-researched, stigmatized and misunderstood area in much of the Global South (Shekhar Saxena, Thornicroft, Knapp, & Whiteford, 2007). Understandings of mental health vary, with some experts referring only to neuropsychiatric disorders, and others including developmental and intellectual disorders within the broad framework of mental health (Patel, Kieling, Maulik, & Divan, 2013; Saxena & Belfer, 2005). Moreover, perceptions of child and adolescent mental health are often culturally specific, creating difficulties in the development of comprehensive, transferable tools for mental health assessment in children. Assessment of mental health disorders has in the past required a specialist professional with training in psychiatry, psychology or social care. The need for clinical specialists previously created barriers to developing tools that could easily be used at the population level (Saxena et al., 2007). Consequently, fewer studies have been conducted in low- and middle-income countries (LMICs) on child and adolescent mental health disorders, and the studies that do exist have used different approaches (Kieling et al., 2007). One strategy to overcome this data gap is to use a screening tool, followed by a diagnostic tool, to define the prevalence of mental health disorders. For instance, studies in India and Yemen used a two-stage strategy in which children were first screened using the Strengths and Difficulties Questionnaire (SDQ), before undergoing a much longer, diagnostic questionnaire named the Development and Well-Being Assessment (DAWBA) (Alyahri & Goodman, 2008). The DAWBA is a combination of assessment questionnaires that can be posed directly to children aged 11–17 years, to parents of children aged 5–17 and to teachers of children aged 5–17, and is designed to generate psychiatric diagnoses reflective of both the ICD-10 and the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) (‘Youth In Mind’). However, while this tool can be administered by a non-clinically trained professional, it does require the presence of a child psychiatrist to assign the diagnoses. Another available tool is the World Health Organization Disability Assessment Schedule for Children (WHODAS-Child), which has been validated in Rwanda (Scorza et al., 2013). The WHODAS-Child was adapted from the adult-only WHO Disability Assessment Schedule II and focuses on difficulties in six domains – understanding and communicating, getting around, self-care, getting along with others, life activities and

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participation in society. Results from the study showed that children with previously diagnosed mental health disorders scored significantly higher than those without using the tool, especially in relation to depression. Moreover, the findings showed that the module can be administered by a non-professional, minimizing the need for costly and complex diagnostic tests requiring psychiatrists and psychologists. Given resource constraints, the further development of valid tools that can assist non-specialist clinicians in identifying children at risk of mental health disorders in LMICs must be prioritized. In particular, there is a need for locally validated questionnaires that can provide clear scoring for use in diagnosis, treatment and management (Patel et al., 2013).

Summary of methods used to measure disability There are a range of methods available to collect data on disability, all of which have their advantages and disadvantages, and which are summarized in Table 4.2. The tool that you choose to measure child disability will depend on the setting, as well as the reasons for collecting the data. To summarize, direct questioning on disability will underestimate the prevalence of disability and should usually be avoided. Self-reported methods can be used to classify whether a person has or does not have a disability and the level of difficulty they experience. The Washington Group Questions are likely to become the most widely used self-reported function tools, particularly in population surveys and censuses, and are the most appropriate for big data collection exercises using administrative data such as EMIS. Impairment or disabling health conditions can also be assessed to help plan health services, but when measured alone will only provide information on one of the components of disability, and cannot be considered a proxy for disability if used alone. Furthermore, impairment measures can be timeconsuming to collect and may depend on the presence of a clinician, making it difficult to use tools that measure impairment on a large scale. However, the use of mobile tools will make these assessments easier to conduct and potentially incorporate into school screenings in different settings. A combined approach using both self-report and assessment of impairments may be beneficial, for instance, asking self-reported functional questions on hearing and then measuring hearing level through PTA among those who report having difficulty. As discussed earlier in this chapter, disability is a continuum, yet most scales focus on classifying people as having or not having a disability. Some approaches, such as the Model Disability Survey, instead focus on measuring the extent of disability, rather than the presence of a disability or not. Furthermore, assessment of environmental and personal barriers, as well as level of participation, are fundamental to the ICF model, but fewer comprehensive tools are available for these, to date.

Ethical considerations when collecting data on child disability There are several additional elements to bear in mind when considering how best to collect data on children with disabilities, and these relate to the complex question of ethics.

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Table 4.2 Summary of methods for measuring disability Type

Example

Utility

Advantage

Disadvantage

Direct Questioning

‘Do you have a disability?’

Identifies the population with significant disabilities

- Rapid - Limited Space

- Under reporting (stigma + lack of selfidentification)

Self-reported functioning

‘Do you have difficulty in seeing?’

Identifies the population with reported limitations in functioning, placing them at higher risk of disability

- Simple to administer - Info on experience/ impact

- Does not assist planning for health or rehabilitation services/ interventions/ needs assessment

Clinical screening for impairments

Visual acuity measurement

Identifies the population with clinically determined impairments in functioning

- Info on impairment type, severity and causality for intervention

- Resource intensive - Impairment only one component of disability

The slogan ‘No survey without service’ means that it is unethical to screen people for a condition without being able to offer an appropriate service for those identified in need. For instance, if a survey is conducted to measure hearing impairment in children, then a referral pathway needs to be set up so that all children identified with hearing loss are given an appointment to see a relevant clinician. This consideration can also be taken a step further when considering how the findings are turned into action, such as treatment. A study investigating access of children with disabilities to school should plan on how to use the findings of the study to improve practice so that the survey can lead to better quality services at the school (e.g. setting up a therapy room in a school). In this respect, researchers should consider developing strong links with different stakeholders to help move data analysis into concrete actions or interventions. For example, the disability NGO CBM commissioned a Systematic Literature Review on ‘Inclusive Education and Children with Disabilities: Quality Education for All in Low and Middle Income Countries’(Wapling, 2016). The review analysed information on inclusive education policies and programmes from 131 peer-reviewed journal articles, and the results are being used to inform their programmatic practices and approaches to inclusive education. It is also important to work together with disabled people’s organizations (DPOs) at this stage to make sure that recommendations are appropriate for children with disabilities. Researchers should also make sure that the results are disseminated to different stakeholders in various ways – including through academic papers for others in academia, policy and advocacy briefs to stakeholders, and village-level talks to the community and children themselves.

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The questions of consent and confidentiality are also important before collecting data. Everyone who is interviewed or screened for disability should give their consent, or agreement, whether this is written or verbal. Consent must be ‘informed’ meaning that the processes have been explained and the individual is fully informed about what will happen during the data collection, and with their data. Children with certain types of impairment (e.g. intellectual) or children below the age of consent may not be able to give consent themselves, in which case this must be sought from their caregiver or guardian. Assent – which is not legally binding but ensures that the participant has expressed their agreement to participating in the data collection – should still be sought directly. All information should be kept confidential and anonymous. Finally, children with disabilities may have different underlying impairments which will affect their ability to understand and respond to questions or undergo examinations, for instance, children with intellectual impairments. These factors need to be taken into consideration when planning a data collection exercise. For instance, are sign language interpreters available to interview children with hearing impairments who use sign language? What other approaches can be used when children with hearing impairments are not familiar with sign language? Are the interviewers trained to gather information from children with intellectual impairments? Are the interview sites physically accessible? Is information provided in an appropriate reading medium (e.g. Braille)? The best way to make sure that the planned data collection processes are appropriate for children with disabilities is to include children with disabilities themselves in the planning phases. One way to achieve this is to collaborate with DPOs.

Conclusions In this chapter, we have looked at how different conceptualizations of ‘childhood disability’ have made it difficult to collect data in the past, and made it very difficult to compare findings across studies and over time. We have unpacked the prevailing ICF model of disability to explain how to collect data that is compatible with different components of this model and is related to child functioning, impairments and participation. We have looked at tools that allow us to determine which children have a disability, and how to understand the extent of their disabilities along with their functioning, impairment and levels of participation. We have explored the importance of collecting data on childhood disability to meet a number of different needs related to the education of children with disabilities in the Global South, and the different methods that can be used such as population-based or school screenings, or using administrative data such as EMIS. We have identified the types of information that are required to estimate the prevalence of childhood disability, to identify the needs of children with disabilities and to monitor the educational inclusion of children with disabilities. We have discussed the advantages and disadvantages related to different methodologies used to identify and collect data. Ultimately, the type of data that is collected, and the best approach, will depend on the reasons why the data is being collected.

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As discussed at the beginning of this chapter, several internationally and legally binding agendas and conventions mandate the collection of data on childhood disability. This is an imperative step towards improving programmes, policies and advocacy for children with disabilities across the globe. Without comprehensive and robust data on childhood disability, it will be impossible for even the most inclusive educational policies and programmes to meet the needs of all children in a meaningful way. Moreover, in situations with limited resources, as is the case in much of the Global South, lack of evidence on the number of children with disabilities, their needs and their experiences, has the potential to replicate the errors of the past – wasting valuable resources and leaving children with disabilities without the necessary educational and health services they need. This must be avoided at all costs, by trying to overcome the challenges set out within this chapter and adhering to our recommendations to build an evidence base on childhood disability in the Global South.

Summary of key points ●

●

●

It is important to collect data on childhood disability in order to estimate how many children there are with disabilities, understand the experience of children with disabilities, find out how many children with disabilities don’t go to school and why, and to identify children with disabilities early, before they miss out on school. There are different ways of conceptualizing and measuring disability. This has made it difficult to compare disability data across time and between different geographic regions. There are a number of different methodologies for measuring disability in children, which have advantages and disadvantages in terms of the efforts needed for data collection and the information acquired.

Suggested questions for discussion 1. What are the main challenges in using existing data to estimate childhood disability prevalence and impact in the Global South? 2. What types of information do we need to ensure meaningful inclusion of children with disabilities in education in the Global South? 3. Under what circumstances would we prioritize the collection of impairment data in children?

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Part Two

Situated Perspectives Applying Conceptual Approaches

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Advancing a Comparative Case Study Approach towards Education and Disability Research: An Example from Bhutan Matthew J. Schuelka (University of Birmingham)

The trick is not to see the forest and miss the trees, nor see the trees and miss the forest, but to see the forest and the trees. Khyentse Norbu’s film Travellers and Magicians (2003) depicts a Bhutan grappling with this idea as it encounters modernity and globalization in the twenty-first century. Dondup, the film’s main character, clad in white sneakers and an ‘I ♥ NY’ T-shirt, resides in a small Bhutanese village, and longs to live a ‘Western’ life and leave the ‘backward’ traditions of his home village. On the road to Thimphu, Bhutan’s capital, Dondup encounters an apple seller, a paper maker and his daughter, and a Buddhist monk. The monk warns Dondup that a desire for things far away is preoccupying him from living a life of value and happiness, and he tells Dondup a parable about a young man who desired to live in a ‘dreamland’ but found only unhappiness, lust and murder. The monk pointedly explains, ‘You should be careful with dreamlands. Because when you wake up, it may not be very pleasant’ (Khyentse, 2003). Travellers and Magicians represents not just Bhutan but also the experiences of many countries and people in the Global South complexly negotiating meaning, identity and sense of place in the twenty-first century. As in Khyentse Norbu’s film, sometimes this search for meaning and purpose is a world full of stark binaries: tradition/modernity, East/West, desire/happiness, self/community, global/local – even Global North/Global South. As Dondup began his journey in Travellers and Magicians, his choice seemed to be to either stay in Bhutan or leave it completely. To the monk he encounters, it is either a modern life of unhappiness or a traditional life of happiness. However, each traveller on the road represents an individual producing their own narratives and negotiations. As a whole, vast over-simplified binaries begin to lose their hold in the face of a collection of individually constructed worlds. In researching global phenomenon such as education or disability, it is often hard to keep both the macro-picture and the micro-picture in focus at the same time. The act of education and the construction of disability occur in cultures and societies in every corner of the earth, but each locale represents a different encounter and a distinct

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cultural production. In research, it can be hard to capture what is simultaneously occurring globally and locally as a dialectic process, rather than as a unidirectional top-down or bottom-up process. For some, research in disability and education often means that the focus is on discourse on disability rights and inclusive education as it moves from the international down to the local practice – usually critiquing the gaps of policy and practice and the local ‘barriers’ to inclusion. For others, it means a focus on the hyper-local and in how immediate actors are constructing disability through cultural production and reproduction. As I stated at the beginning of this chapter, I believe that we should see the forest and the trees. One promising methodological framework in which to do this is a comparative case study (Bartlett & Vavrus, 2014a, 2014b, 2017; Vavrus & Bartlett, 2006, 2009). In this chapter, I propose to advance the comparative case study for research in disability and education in two ways. The first proposition is that comparative case studies can illustrate sociocultural constructions of ‘disability’. For example, I found that local participants in Bhutan were negotiating the meaning of ‘disability’ from multiple local and global discourses simultaneously. Second, comparative case studies can interrogate the appropriation of disability-specific inclusive education policies ‘borrowed’ from elsewhere. I found that global and local actors and discourses were influencing policy meaning in Bhutan in both obvious and obscure ways. In this chapter, I present my comparative case study research in Bhutan as an example, which can be found in greater detail in publications elsewhere (Schuelka, 2014, 2015, 2018). The main assertion in this chapter is to advance the comparative case study as a tool for global disability and education research. Before I summarize the case study in Bhutan, I first explore some of the literature on ‘disability’ as a global research topic, arguing that much of it falls into either the macro-universal-instrumentalist domain or the micro-sociocultural-phenomenological domain. I then go on to explain the comparative case study approach and some of its theoretical underpinnings. After the Bhutanese case study example, I conclude with future directions for disability and education research using a comparative case study framework.

Disability as global research topic The phenomenon of ‘disability’ as a constructed experience is universal, in that it is present in every culture. However, at the same time, ‘disability’ is a profoundly hyperlocal phenomenon, in that it is entirely and immediately relational. As McDermott, Edgar, and Scarloss (2011) state, ‘One cannot be disabled alone’ (p. 230). There is an inherent tension in disability and education studies – as there is in many critical studies areas – between the universal and the particular. In this section, I will explore some of the literature on disability and education research from a global perspective. I argue that you can organize this literature into roughly two domains: the macrouniversal-instrumentalist approach and the micro-sociocultural-phenomenological approach. In addition, there is a small but growing body of work that moves towards a comparative contextualized approach.

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Many articles, books and chapters on disability and education begin with an account of ‘disability’ as a global phenomenon and, consequently, a global ‘problem’. This is what I term the macro-universalist approach. For example, Priestly (2001) begins his book by stating: ‘Disability is a global issue’ (p. 3). It is a classic narrative device, and many authors will go on to explain that disability is a condition that cuts across populations, can potentially affect us all into old age, and then provide the reader with some United Nations statistics. I am certainly no stranger to this sort of scene-setting as well. Locating ‘disability’ as a global phenomenon necessitates a certain degree of fictive kinship of an incredibly heterogeneous group of people. By fictive kinship I mean that a categorical label – ‘disabled’ – needs to be first applied and determined for a group of excluded and unrelated people in order to then figure out how they can all be included. This is a dilemma, to be sure (i.e. Minow, 1990). From a civil rights perspective, however, this can be especially useful for advocacy, as Shapiro (1994) highlights in his history of the disability civil rights movement leading to the passage of the Americans with Disabilities Act. Providing a universal definition of who is and is not ‘disabled’ is extraordinarily difficult and, many would argue, a fool’s errand. However, many attempts have been made, most notably the International Classification of Functioning, Disability and Health (ICF) created by the World Health Organization (WHO). The purpose of this project was essentially to provide a culturally neutral and universal tool for classifying disability (Ingstad & Whyte, 2007). International organizations such as the WHO, United Nations Children’s Fund (UNICEF) and United Nations Educational Scientific and Cultural Organization (UNESCO) certainly drive the universality of disability rights as their modus operandi. The 2006 Convention on the Rights of Persons with Disabilities (CRPD) was, without a doubt, a landmark moment for all persons with disabilities all over the globe. However, more understanding is needed to explore just how the international discourse on an issue such as inclusive education – Article 24 of the CRPD – interacts with local context. Too often, the sense of multi-directionality and complex cultural production is missed when the general tone of research focuses on the implementation of the CRPD from the top-down. There are more nuanced questions that require consideration than simply an instrumentalist analysis of policy implementation. In what way does CRPD discourse shape the lived experience of persons with disabilities? How does the CRPD re-conceptualize ‘disability’ in a local community? In what way is inclusive education being appropriated and re-imagined at the local level? There is a strong instrumentalist tendency within the macro-universalist viewpoint that tends to advocate disability rights in education – inclusive education specifically – to be applied globally and, like the ICF disability categorization, to be culturally neutral. To that end, there exists a plethora of training manuals and resource materials for inclusive education that are produced from organizations like the Asian Development Bank (2010) or the Commonwealth (Rieser, 2008). LeFanu (2015) provides an effective critique of pedagogic materials being produced by international development agencies in regard to children with disabilities. More troubling, I would argue, is the use of a research tool like the Index for Inclusion (Booth & Ainscow, 2011) – a tool developed in the English context – being applied without significant revision around the world (e.g. Booth & Black-Hawkins, 2001). Equally problematic is the common tendency

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to push ‘best practices’ or ‘what works’ or ‘evidence-based practices’ (i.e. Mitchell, 2008) in education for students with disabilities around the world with little regard to specific locations and the social actors, activities and interactions that define that context. While other works have at least acknowledged the importance of context in researching disability (Alur & Timmons, 2009; Armstrong, Armstrong & Barton, 2000; Mitchell, 2005; Priestly, 2001; Rose, 2010) by presenting chapters based in different sociocultural spaces, the tone of these volumes remains one of a macro-universalist disability experience. For example, Fletcher, in his conclusion to Mitchell’s (2005) book Contextualizing Inclusive Education, writes: A priority for the world community is to examine global trends and to seek solutions from a universalist perspective in order to minimize the discriminatory conditions, abuses, social injustice and marginalization suffered by individuals with and without disabilities. While disability is only one of multiple dimensions that must be considered, it must be recognized that, in many cases, persons with disabilities are the most dispossessed, marginalized and fragile. (Fletcher, 2005, p. 280)

This quote captures the essence of the macro-universalist viewpoint quite well. When discussing the universal experience of disability, a central criticism levelled on this kind of discourse, exactly how ‘universal’ it is and whose ‘universal’ is it? Davidson (2008), for example, questions the extent to which a state-centred and individual human rights model view of disability is resonant in other societies. McRuer (2006) argues that ‘if disability studies turns its attention to global bodies, then – in coalition with feminist, queer, postcolonial and over movements – we need to develop new vocabularies, disability vocabularies’ (p. 204). Barker and Murray (2013) also advocate for a postcolonial lens on global disability studies, ‘Disability Studies problematically transports theories and methodologies developed within the western academy to other global locations, paying only nominal attention to local formations and understandings of disability’ (p. 61). However, there is also an abundance of disability literature at the micro-local-phenomenological level that is entirely relevant and important, but nevertheless myopic in its lack of recognition of global disability discourses that pass through each case. Studies of disability at the micro-level have produced some truly fascinating work that can go on to influence a global understanding of disability. One of the pioneering works in the field of anthropology and disability is Groce’s (1985) Everyone Here Spoke Sign Language. While nearly the entirety of her book is focused very much on the bounded case of Martha’s Vineyard, Groce does discuss historical and cross-cultural constructions of deafness in a later chapter. Other works such as Kohrman’s (2005) Bodies of Difference about disability in China, and Nakamura’s Deaf in Japan (2006) and A Disability of the Soul (2013) also focus on the particular, with an eye towards discourses at various meso- (national) and macro-levels (international) that influence local disability discourse and meaning. The value in ethnographic work at the micro-level is that it highlights the socially and culturally constructed concept of ‘disability’. Volumes such as Ingstad and Whyte’s (1995) Disability and Culture and Jenkins and Barrett’s (2004) Schizophrenia,

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Culture, and Subjectivity present many case studies from around the world with the comparative conclusion that ‘disability’ is shaped by cultural and social organization. The chapters within these particularly influential books primarily give us bounded cases, focusing on the lived experiences of socially produced actors within specific cultural contexts. However, a chapter like Sadowsky’s (2004) is somewhat similar to the multidimensional axes of a comparative case study in his historical exploration of asylums in colonial Nigeria. Ingstad and Whyte’s later work, Disability in Local and Global Worlds (2007), pushes for thinking of disability globally. They write, ‘In invoking the perhaps overused contrast between local and global, we want to urge rethinking and research in the direction of greater differentiation and specificity’ (p. 5). A few pages later, Ingstad and Whyte suggest that researchers must problematize the relation between the local and the global by ‘imagining globality’ and also tracing the movements of ‘global flows’ (p. 10). Just as a singular focus on the macro-universalist perspective can overlook the complexity of cultural production at the local level, so too can the microsociocultural perspective miss the interconnectedness of the local level to the discourses and meaning-making that occurs at other levels. There have been a few voices in the wilderness advocating for a better understanding of disability and education across levels and sites. Singal and Jeffrey (2011), for example, contend, ‘The lack of rigorous studies examining issues at the micro, meso and macro levels has been an important failing in the field’ (p. 172). LeFanu (2013) examines inclusive curriculum in Papua New Guinea with an eye towards the ‘microcontexts’ and the ‘macro-contexts’ and suggests that scholars can critically view international inclusive education development by drawing ‘upon the qualitative tradition in international and comparative education which insists research should be empirically grounded, methodologically rigorous, and open to the situated complexity of social worlds’ (p. 147). The strongest case to be made in connecting the macro and micro together in disability studies comes from the work of Ingstad and Whyte (2007) and Alfredo Artiles and colleagues (Artiles & Dyson, 2005; Artiles, Kozleski & Waitoller, 2011). In their mission statement to chapter authors, Ingstad and Whyte direct: The task is … to show what connections are important to actors and what connections the researcher finds useful for comprehending the situation. The accounts are of relations between actors in local worlds, to institutions, and to policies, classifications, technologies, and discourses that are taken as ‘global’. At the same time they illustrate how disconnections are experienced and even facilitated. (2007, p. 24)

Similarly, with a focus on inclusive education policy, Artiles, Kozleski, and Waitoller (2011) argue that ‘national leaders and local actors appropriate inclusive education in the midst of complex historical and cultural contingencies’ (p. 8). The main point that these authors are making is the interconnectedness of levels of analysis that need to be considered as interwoven and not easily separated. There are sociocultural productions and reproductions at all levels of making, implementing and appropriating a policy

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like inclusive education, or constructing the meaning of ‘disability’. Artiles and Dyson (2005) advocate for a comparative cultural-historical analysis when approaching inclusive education. They write: The question of whether inclusive education is best understood as a global or a local phenomenon cannot, we suggest, be separated from the location of that phenomenon at a particular historical moment. If inclusive education is global, that is because it has emerged in a period that is characterized by globalization in many aspects of human activity. And if the global nature of inclusive education cannot quite obscure its local flavours, that is because of the ambiguous nature of globalization itself. (p. 37)

This comparative cultural-historical analysis is a natural bridge to the comparative case study framework, which I will discuss below.

Comparative/vertical case studies The comparative case study – previously termed a ‘vertical case study’ – was designed as a new approach to comparative international education, which is a field that has had an ongoing tension with single-country or single-location case studies and the usage of the word ‘comparative’. The comparative case study is an attempt to recognize the importance of local culture, history and actors, but situate them within the comparative context of international discourses, power-structures, ‘scapes’ and ‘flows’ (Appadurai, 1996), and ‘connections’ and ‘frictions’ (Tsing, 2005). This can only be made possible by a more contemporary and nuanced understanding of globalization as a deterritorialized and dynamic phenomenon that problematizes the binary notion that ‘local’ and ‘global’ are conceptually oppositional. The comparative case study approach was pioneered by Frances Vavrus and Lesley Bartlett and inspired by previously posited global ethnographic methodologies such as Bray and Thomas (1995), Marcus (1995) and Sutton and Levinson (2001). Furthermore, it has been linked in spirit to theoretical propositions such as Carney’s ‘policyscapes’, LaTour’s Actor Network Theory (Bartlett & Vavrus, 2014b) and Burawoy’s extended case method (Bartlett & Vavrus, 2017). Vavrus and Bartlett’s (2009) original definition of a ‘vertical case study’ was a ‘multisited, qualitative case study that traces the linkages among local, national, and international forces and institutions that together shape and are shaped by education in a particular locale’ (pp. 11–12). While the ethnographically based case study is situated at a particular locale, the research is also attuned to the phenomenon-of-study as it is situated among multiple sites, levels, histories and contexts. Conceptually, this is a three-dimensional model, which is why the term ‘vertical case study’ has been changed recently to ‘comparative case study’ to reflect its multidimensionality along three axes (Bartlett & Vavrus, 2017). The levels of micro (local), meso (national) and macro (international) constitute the vertical axis. An example of the vertical axis is Bajaj’s (2010) study of the meaning and utility of secondary education in Zambia in which she featured the voices of local participants

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in the area of Ndolo as situated in the context of Zambian national educational and economic challenges, the global discourses of economic austerity and inequality, and an overwhelming international narrative of education as a human right that can lead to a better future for all. The key to understanding the relationship between vertical levels is to understand that there is no clear demarcation between them. The global and the local is a false dichotomy that overlooks the deep connection – and disjuncture – in which all actors produce and reproduce cultural meaning making (Hannerz, 1996). As Piot (1999) astutely asks, ‘Where is there a “local” that is not also “global”?’ (p. 173). By conducting a comparative case study, Vavrus and Bartlett (2009) argue that the sharp boundaries between such reductive binaries as global/local, East/West, traditional/modern, can be effectively problematized. This approach also serves to dismantle the ‘privileged’ position of the nation-state in analyses and situate it more within a multi-levelled network of units of analysis (Bartlett & Vavrus, 2017). An example of this can be seen in Max’s (2009) exploration of higher education policy in Senegal using a comparative case study approach infused with the ideas of décalage – the gap of policy and practice between vertical levels – and bricolage – the improvisational nature of local, national and international actors in policy appropriation and bespoke policy solutions. The second axis in a three-dimensional comparative case study is the horizontal. This entails a multi-sited ethnographic approach steeped in sociocultural studies of educational policy. The basic tenet of such a vantage point is that actors in disparate locations appropriate educational policies or ideas through the production of symbolism and meaning (Sutton & Levinson, 2001). For example, a somewhat abstract idea such as ‘inclusive education’ – with its international and national discourses – needs to be shaped, implemented and interpreted by local actors in multiple sites. Gaps between policy and practice are already exhaustively researched, but a comparative case study affords the opportunity to explore how actors across sites make meaning and culturally produce discourses that float through all levels of the vertical axis. Bartlett and Vavrus (2014b) suggest that Actor Network Theory is a powerful lens in which to analyse the relational interconnectedness of networks and ‘assemblages’ of actors. Gardinier (2015) provides a useful example of networks and the horizontal axis by exploring local educational experts as ‘in-betweens’ who negotiate and appropriate global educational policies into the Albanian context. The third axis in a three-dimensional comparative case study is the transversal. This z-axis represents the change that occurs over time in the vertical and horizontal axes. Both the vertical assemblage and sociocultural production of locales are viewed in historical context. For example, Pai (2014) traces the discourses and meanings of ‘universal education’ across time in postcolonial Sierra Leone, as it has shifted in meaning at all levels of the vertical axis as well as in its interpretation by a network of actors. The most important point of recognizing the transversal element of a comparative case study is that the historical matters, but it is equally important to understand that nothing is static. A comparative case study, at its core, is a recognition of dynamisms, very similar to the comparative cultural-historical analysis proposed by Artiles and Dyson (2005).

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The comparative case study multidimensional framework is a valuable tool for educational research. Vavrus and Bartlett (2006) suggest that there are three primary benefits that a comparative case study can offer. First, a comparative case study recognizes the importance of local knowledge production. Second, a comparative case study pushes scholars to critically evaluate their own forms of knowledge production and to be cautious of short-term projects that do not fully invest in local contexts and actors. Third, a comparative case study de-centres the central position of the nationstate in research to recognize the importance of actors, networks and assemblages. The comparative case study also opens up traditional case study methods that can arguably be considered either neo-positivist (Yin, 2014) or bounded interpretivist (Merriam 1998). A comparative case study is more process orientated (Maxwell, 2013), incorporates critical perspectives and also strongly advocates for a case being ‘unbound’ and open to the incorporation of unpredictable and improvisational connections that are central to the human experience. As I have suggested above, a comparative case study can be used as a framework for exploring any phenomenon, but until now has been primarily positioned in comparative international education studies. For my own research (Schuelka, 2014), I used a comparative case study methodology to investigate inclusive education policy in Bhutan. However, I also used the unbounded aspect of comparative case studies to incorporate a disability studies approach to exploring how ‘disability’ is constructed in Bhutan. In this way, my research was a merging of the macro-universalist and micro-sociocultural studies of disability, as discussed in the previous section, via the multidimensional comparative case study framework. In the next section of this chapter, I will summarize and highlight key points in my comparative case study in Bhutan to help illustrate the research possibilities of education and disability in the Global South.

A comparative case study of inclusive education and disability in Bhutan Bhutan is an outlier in many cases. It is a country that famously eschewed economic development indicators in its pursuit of Gross National Happiness. It has significant restrictions on tourism, foreign direct investment and international non-governmental organizations. It is a Buddhist kingdom that peacefully transitioned to democracy in 2008. Bhutan is also a country that was relatively isolated from the rest of the world, sitting atop the Himalayas as a theocratic feudal state until 1907 and then only truly beginning the process of ‘modernization’ to a capitalist economy with the First FiveYear Plan in 1959. The formalization of written Dzongkha, the national language of Bhutan, did not occur until the late 1970s, nor did formal secular education truly become standard until the 1980s. Essentially, Bhutan went from being a mainly illiterate agrarian society to a universal educational system in a capitalist society in the span of one or two generations (for more, see Schuelka & Maxwell, 2016). Bhutan makes for a fascinating comparative case study because of its unique history, but also because of its transparency for analysis. It is a very small country with key

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policy actors fairly accessible. Tracing the origin of ideas and practices, with just a little bit of investigation, was facilitated by being able to locate the one or two advocates for disability rights, or the one inclusive education reference book that can be found on the shelf in the school. Of course it is a bit more complex than that, but the accessible size of the country and the openness of its people opened up initial avenues of exploration to follow. The original reason I was interested in Bhutan was the cultural interactions between Buddhism, Gross National Happiness and inclusivity. Bhutan had recently signed the CRPD and a new policy on special educational needs continues to make its way through the policy-making process. I conducted my fieldwork in Bhutan from 2012 until 2013, at an exciting – both positive and negative – time of cultural, social, political and economic changes. While there, I also interacted with the youth of Bhutan on a daily basis as a lecturer at the Royal Thimphu College – a role that afforded a significant ethnographic opportunity. My research was designed as a comparative case study – at that time termed a ‘vertical case study’ – and ultimately became my doctoral thesis (Schuelka, 2014). Parts of the dissertation research have expanded into published works (Schuelka, 2015, 2018). I went on school site visits several times per week for two school years, with four main school sites in and around Thimphu. In all, besides the school children, I had 126 participants ranging from teachers, parents and head teachers to leaders in civil society organizations, government officials and personnel within UNICEF. There were multiple opportunities to observe and participate in conferences, workshops and special events pertaining to disability issues throughout my time in Bhutan. My main research questions focused on why and how inclusive education as an international concept was being borrowed into Bhutan, how international inclusive education discourse was being interpreted and appropriated by local Bhutanese actors, and how the construction of ‘disability’ in Bhutan was changing in its interaction with these international discourses through individual actors. Below, I will highlight a few of the main findings as they relate to the promise of a comparative case study framework. To start, I was interested in the religious-cultural construction of ‘disability’ in Bhutan, given the strong presence of Buddhism in the majority of Bhutanese lives (Karma, 2013). The conceptualization of disability in Buddhism, particularly in the Mahāyāna tradition, is an emphasis on ‘whole-body completeness’ and the pureness of the mind in order to be a vessel for dharma (path of the Buddha). One of the interesting paradoxes in Buddhist theology is its view of karma in relation to disability. In one sense, karmic life cycles means that ‘disability’ is directly caused by transgressions in a past life, and there is a general blame and mistrust of these people in the community. They are, in other words, bad omens. However, karmic life cycles also mean that good merit must be earned in this current life cycle in order to eventually progress through samsāra (birth, life and death cycle) into enlightenment. The Buddha-dharma calls on its practitioners to be compassionate towards others and to accept the fate of suffering. Thus, on the one hand is a cultural mistrust of difference and on the other is a spiritual embrace of the interconnectedness of all sentient beings. This cognitive dissonance plays out in various cultural ways (Schuelka, 2015). Deciding who did, and did not, have a disability was a fluid construct relative to the expectations of the community.

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There was no written language for the majority of Bhutanese until very recently, so a disabling ‘condition’ such as dyslexia or other learning difficulties would not necessarily have been socially disabling – nor even recognizable. Viewing the cultural construction of disability in Bhutan via the comparative case study framework, I then began to explore the already complex cultural conceptualizations of ‘disability’ in Bhutan with its interactions to exogenously constructed conceptualizations of ‘disability’. In other words, how ‘disability’ was being constructed in Bhutan across vertical levels and multiple sites and actors. What I found was a contestation of social-human rights models and bio-medical models in constant appropriation and production by Bhutanese actors. The social-human rights model perpetuated itself predominantly through the operation of UNICEF-Bhutan, which is one of a handful of major international development agencies operating in Bhutan. Initiatives such as child-friendly schools, Education for All, inclusive education via the CRPD and many other human rights agendas were being implemented in coordination with the Royal Government of Bhutan. The discourse of disability human rights, from a global perspective, directly empowered many parents to advocate for their children to receive education and healthcare and to be recognized as contributing Bhutanese citizens (Schuelka, 2014). An interaction with human rights discourses through various propaganda campaigns and awareness events, such as the International Day of Persons with Disabilities supported by Her Majesty the Druk Gyaltsuen (Dragon Queen), was constructing ‘disability’ into a social marginalization category and opportunity for human rights assertion. In many ways, this exposed and challenged certain cultural practices in Bhutan such as isolation of persons with disabilities, exclusion from religious pujas (rituals) and low expectations of societal contribution made by persons with disabilities. As one parent and advocate voiced, ‘We must challenge these things in the scientific age’ (Schuelka, 2014, p. 139). Touching on the term ‘scientific age’ is telling here, in that the other strong global disability discourse in Bhutan is that of the bio-medical. In my previous article (Schuelka, 2015), I trace this discourse in an illustrative example of an ‘expert medical team’ from the United States conducting a workshop on early disability diagnosis and ‘detection’ for Bhutanese educational and healthcare professionals. In this workshop, there is a prevalence of cultural othering, universal norming and terms such as ‘abnormal’ and ‘deviant’ (Schuelka, 2014). Many teachers were enthusiastic to finally ‘figure out’ their ‘problem’ students, and parents were eager for a diagnosis in order to find appropriate ‘treatments’. This exchange that I had in a parent focus-group was particularly compelling: Parent 1: Diagnosis is the most important right now to get the right treatment. Right now if you see a small baby you don’t know what’s wrong with her and then you try, with diagnosis you get so many medicines and that medicine affects the child. Sometimes it defects the child’s brain, also. Parent 2: Like she said, when it comes to treatment and diagnosis, still we are not really getting what we are expecting. When we go to hospital, the wrong diagnosis delays the treatment. (Schuelka, 2014, p. 142)

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Notice here the complexity of interpretation and production that is going on in this exchange. While these parents want diagnosis treatment – they want a ‘professional’ to officially label their child as having a ‘problem’ – there is also wariness in the efficacy of allopathic medicine. This form of ‘modern’ medicine – often referred to in Bhutan as ‘Western medicine’ – is simultaneously useful and not to be trusted. A major explanation of the cause of disability in Bhutan today is to blame a doctor or a medical treatment. Parents, at least the parents I encountered, were shifting from karmic explanations of ‘disability as fate’ into a search for the identifiable cause of the disability within the child. In the same breath, parents and others also sought the removal of societal barriers via a universal human rights approach. As disability scholars, we tend to view the conceptualization of disability as a struggle between social and medical models, but in reality the view of ‘disability’ as being inside and outside simultaneously is much more common around the world. Using a comparative case study approach could help disability scholars break free from the primacy and over-simplicity of disability models (Llewellyn & Hogan, 2000). One of the reasons for this complex conceptualization of disability is a flow of ideoscapes (Appadurai, 1996), or abstract ideas and world views, across time and space and through Bhutanese actors. As one of my teacher interviewees expressed, ‘Government is bringing people from outside. They share their ideas from their country. That’s how our people’s way of thinking about disability … I think … is slowly changing’ (Schuelka, 2014, p. 135). Singularly focusing on the ‘traditional’ construction of disability in Bhutanese culture in a static sociocultural sense or, conversely, viewing Bhutan from above as a case of global isomorphism fails to capture the complex lived realities of persons at all levels. Next I will turn to inclusive education policy in Bhutan and in how it constructs disability in expected and unexpected ways. The origins of inclusive education policy in Bhutan are fairly clear. The National Policy on Special Educational Needs (MoE, 2013) writes right into the policy that it is drawing from the Convention on the Rights of the Child, the CRPD and the Incheon agreement (UNESCAP, 2012). In addition, participants to the drafting of the policy are given at the end of the document with representatives from UNICEF and outside Bhutan listed. There were other key policy actors involved in this policy design and implementation strategies, including academic working groups and organizations from the United States and Australia. In my original research (Schuelka, 2014), I used the policy borrowing model designed by Phillips and Ochs (2003) to trace the various stages of inclusive education attraction, decision, implementation and indigenization in Bhutan. I will not go into detail about this here but, in brief, I used historical documentation and interviews of key policy actors to highlight the political motivations, impulses and interpretation of inclusive education definitions and models developed from outside of Bhutan. As one governmental official stated: Before the digital age, there were limited choices. But now, the internet has brought so much choice … but then how do you analyze what is good and what is bad information? We are still learning, and our educational level is rising, so people are more careful. Ultimately we pick and choose what is best. (Schuelka, 2014, p. 112)

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This quote aptly illustrates the agency of local actors in making policy decisions, which can sometimes be made with independently sought information and sometimes the information is handed to them from a foreign ‘expert’ or agency. It is often just as likely that a local disability rights advocate seeks to appropriate a global disability rights message that was sought out through his or her own volition. At one disability rights event I attended, a government official proclaimed, ‘We need to make the right real’ (Schuelka, 2014, p. 134), which is the title of the Incheon Strategy to ‘Make the Right Real’ for Persons with Disabilities in Asia and the Pacific (UNESCAP, 2012) to which Bhutan is a signatory. While I used a comparative case study framework to explore policy borrowing and construction in this manner, I also wanted to explore how an inclusive education strategy – built in patchwork fashion from a network of local and global actors with a plethora of local and global discourses – shaped the conceptualization of ‘disability’ in Bhutanese schools. In order to do this, I first looked historically at the precedents established by the Colonial British-Indian model of education from which Bhutan borrowed heavily both conceptually and materially in the early years. Bhutan itself does not have a history of colonization, but the educational system set up by the British in India has had a lasting impact that is similar to the experience of many other nations in the Global South (Seth, 2007; Willinsky, 1999). This particular view of education was of teacher-centred pedagogy, tightly controlled curriculum and the notion that advancement through the system was meritocratic. However, ‘meritocratic’ meant that education was essentially a gauntlet of harsh conditions in which only a small number of ‘gifted’ students were expected to succeed and the majority were expected to fail. The societal signal being sent in this system is that ‘school is not for everyone’ – it is for the elite. Of course, inclusive education is a promotion of exactly the opposite: ‘School is for everyone.’ Now, not only do the ghosts of elite education linger, but inclusive education has been grafted on top of it as a palimpsest (Rizvi & Lingard, 2010). In Bhutan, as in many other places, school remains designed only really for some, and the rest are imperfectly included. From a sociocultural perspective, I analysed the instances in which disability was produced in schools. In other words, how a child was made to be ‘disabled’ by the culture and social institution of schooling. I extracted this into four primary domains: physical, pedagogical, curricular and linguistic productions of disability (Schuelka, 2018). Physically, access to schools in Bhutan is naturally difficult given the extreme mountain and jungle geography throughout the entire country. Many schools are in rural areas with little to no access to roads, electricity and water. This prevents some children with a physical disability from easily entering the schoolhouse door. While Bhutan cannot level its mountains to provide accessibility, nevertheless a barrier occurs to shape the meaning of schooling for those who can and cannot physically access it. Pedagogically, the legacy of the British-Indian system, mixed no doubt with the practices of Buddhist monastic education (Zangley, 2016), constructs schooling with a fixed view of knowledge and learning; teachers lecture, students listen and repeat. If a student misbehaves or makes a mistake, they are punished. This teacher-centred approach is prevalent, as is corporal punishment. For both of these practices, attempts

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have been made to eliminate them. Teachers have received training under a new initiative titled Education for Gross National Happiness (Schuelka & Maxwell, 2016). Corporal punishment has been banned. The National Policy on Special Educational Needs advances progressive teaching and learning practices. However, old habits are hard to break and they stubbornly linger, producing and constructing ‘disability’ through a narrow view of knowledge production. More descriptions and vignette examples can be found in my other work (Schuelka, 2014, 2018). In terms of curriculum, the centralized nature of the system means that there is little ability to provide accommodations and alternatives. Students that do not pass exams do not advance. Because schooling is a series of progressive awards and promotion, as it is in most of the world, some students will progress and some students will drop out. As McDermott, Edgar and Scarloss (2011) put it, ‘all children can learn, but many do not, so those who do not learn must have something really wrong with them’ (p. 230). Linguistically, there are over twenty distinct languages in Bhutan – many of them endangered – but only English and Dzongkha are used in schools. Many Bhutanese do not speak either one as a mother tongue, so must learn in a third or even fourth language. This severely disadvantages some students, particularly in Thimphu where urbanization is bringing in people from all over the country into its schools. Karma (2013) writes and works on the issue of language and linguistic diversity in Bhutan, and I have gone into more detail elsewhere (Schuelka, 2018). Just a snapshot look at contemporary schooling practices in Bhutan would fail to capture the historical legacies, borrowed ideas, policy appropriation and cultural production that are occurring in the Bhutanese classroom today. Besides an eye towards the vertical axis and the transversal axis, I also employed the horizontal axis of multiple sites to my advantage. In this way, I could observe how disability was produced more effectively because I could compare practices. Schools with the same curriculum and the same materials included or excluded students with disabilities in very different ways. One principal at an inclusive school I employed as a field site was open to accepting all students with disabilities. Another principal at a different inclusive school would not accept students with moderate to severe disabilities. That principal noted, ‘They won’t be happy to be included, because they will be compared to higher learners. There should be special schools – smaller schools – where there is more attention by teachers. It is better to have special schools because everyone is the same. In normal schools they would feel lonely’ (Schuelka, 2014, p. 120). A comparative case study framework allows us to view this statement with some interest as a deviation away from some interpretations of what inclusive education means. As many scholars have noted, the interpretation of ‘inclusive’ varies widely and is culturally and historically contingent (e.g. Artiles, Kozleski, & Waitoller, 2011). The purpose of this section was to provide a brief example of a comparative case study on inclusive education and disability in Bhutan, in order to illustrate my argument to advance such a methodology for other studies on disability and education globally. I highlighted instances where a more unbounded approach, with particular attention to multiple levels and sites, was beneficial and led to more robust and nuanced findings. In the concluding section of this chapter, I will summarize and suggest a research agenda in global studies of disability and education moving forward.

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Future directions for comparative case studies and disability research In this chapter, I have arranged previous disability and education research into two primary categories: the macro-universalist and the micro-sociocultural. I then explained the comparative case study approach, as put forth by Vavrus and Bartlett, and provided a summary example of a comparative case study of disability and inclusive education in Bhutan. In concluding, I will briefly outline the implications of such an approach. The reason that I believe a comparative case study can have particular relevance to research in the Global South is that in many instances disability constructions and inclusive education policy is constructed in the Global North and then transferred and borrowed to the Global South. In particular, Artiles, Kozleski, and Waitoller (2011) make the point that these global disability and inclusive education discourses are built upon Northern political-philosophical-historical frames and their application to other contexts needs to be critically examined. I agree with Singal (2010) that the research community should embrace a greater emphasis on the lived experiences and contexts surrounding participants, but also be critical towards the powered dynamics in emancipatory and participatory disability research projects. As I demonstrated in the Bhutanese research example above, a comparative case study approach allows the researcher to critically explore how discourses flow throughout the North and South. This occurs most often through the production and appropriation of actors, and there should be space in the research project to be unbound and open to embracing the complexity of local-global flows and networks. The comparative case study framework is uniquely contemporary, as we live with (almost) completely democratized knowledges and dialogues. As I quoted above, one of my participants exclaimed that the digital age brought so much information, and the task at hand is to decide what is ‘good’ and what is ‘bad’. The age of the large-scale transfer of policies and ideas is waning with the increasing empowerment and digital savviness of local policy-actors to search for specific solutions to policy problems or, conversely, to construct all new policy problems themselves. While there is still room to critique the dependency created by international development agencies, equally there is now room to recognize that local actors have agency themselves in accessing the ‘referential web’ of global discourses and policy ideas (Vavrus, 2004). The conceptualization of ‘disability’ is particularly well-suited for comparative case study work, in that there are multiple and simultaneous global discourses at play. The medical model and social model conceptualization of disability are constructed locally and globally, a syncretization of encounters. ‘Persons with disabilities’ is a term both embraced and contested. Disability ‘cultures’ and ‘cultures within cultures’ are constructed. A person that identifies as ‘different’ in their village may find solace and solidarity with the international disability rights movement, but another person may find that all of the sudden they are being told that they are ‘disabled’ and it forever alters their identity and relationship with their community. It is a world of contradictions, contestations and paradoxes. Instead of trying to put everything into neat little boxes, what if we embraced the chaos?

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Summary of key points ●

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Global disability and education research often is conducted either from a macrouniversalist perspective or from a micro-sociocultural perspective. Both perspectives have their own merits, but there is greater potential to merge perspectives via the comparative case study method. A comparative case study on disability and inclusive education in Bhutan demonstrates a complexity in policy appropriation and disability construction made by actors across time, vertical levels and multiple sites. Comparative case studies are particularly well-suited for global disability and education research and are especially relevant in Southern research. This is because of the fluid and constructed nature of disability conceptualization and identity, and rapid flows of people and ideas.

Suggested questions for discussion 1. What is the positive value and potential negative effects of explicitly defining a ‘person with a disability’ at the international level? What implications does this have in the Global South? 2. How might the discourses of the medical model and the social model of disability interact simultaneously in your community? The WHO has introduced a ‘bio-psychosocial’ model of disability as a sort of compromise between models (http://www.who. int/disabilities/world_report/2011/en/). Is this a step forward, or more of the same? 3. What would a comparative case study design look like in your community, or another that you are familiar with? Identify the actors and organizations at various levels and sites, and situate them in cultural-historical context.

References Alur, M. & Timmons, V. (Eds.) (2009). Inclusive Education across Cultures: Crossing Boundaries, Sharing Ideas. Thousand Oaks, CA: Sage. Appadurai, A. (1996). Modernity at Large: Cultural Dimensions of Globalization. Minneapolis, MN: University of Minnesota Press. Armstrong, F., Armstrong, D., & Barton, L. (Eds.) (2000). Inclusive Education: Policy, Contexts and Comparative Perspectives. London: David Fulton. Artiles, A. & Dyson, A. (2005). Inclusive education in the globalization age: The promise of a comparative cultural-historical analysis. In D. Mitchell (Ed.), Contextualizing Inclusive Education: Evaluating Old and New International Perspectives (pp. 37–62). London: Routledge. Artiles, A. J., Kozleski, E. B., & Waitoller, F. R. (Eds.) (2011). Inclusive Education: Examining Equity on Five Continents. Cambridge, MA: Harvard Education Press. Asian Development Bank (2010). Strengthening Inclusive Education. Manila: ADB. Bajaj, M. (2010). Intergenerational perspectives on education and employment in the Zambian Copperbelt. Comparative Education Review, 54(2), 175–197.

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Barker, C. & Murray, S. (2013). Disabling postcolonialism: Global disability cultures and democratic criticism. In L. Davis (Ed.), The Disability Studies Reader (4th Edn.) (pp. 61–73). New York: Routledge. Bartlett, L. & Vavrus, L. (2014a). Studying globalization: The vertical case study approach. In N. P. Stromquist & K. Monkman (Eds.), Globalization and Education: Integration and Contestation across Cultures (2nd Edn.) (pp. 119–132). Lanham, MD: Rowman & Littlefield. Bartlett, L. & Vavrus, F. (2014b). Transversing the vertical case study: A methodological approach to studies of educational policy as practice. Anthropology and Education Quarterly, 45(2), 131–147. Bartlett, L. & Vavrus, F. (2017). Rethinking Case Study Research: A Comparative Approach. New York: Routledge. Booth, T. & Ainscow, M. (2011). Index for Inclusion: Developing Learning and Participation in Schools (3rd Edn.). Bristol: Centre for Studies on Inclusive Education. Booth, T. & Black-Hawkins, K. (2001). Developing Learning and Participation in Countries of the South: The Role of an Index for Inclusion. Paris: UNESCO. Bray, M. & Thomas, R. M. (1995). Levels of comparison in educational studies: Different insights from different literatures and the value of multilevel analyses. Harvard Educational Review, 65(3), 472–490. Davidson, M. (2008). Concerto for the Left Hand: Disability and the Defamiliar Body. Ann Arbor, MI: University of Michigan Press. Fletcher, T. (2005). Future directions. In D. Mitchell (Ed.), Contextualizing Inclusive Education: Evaluating Old and New International Perspectives (pp. 279–284). London: Routledge. Gardinier, M. P. (2015). Middlemen and midwives of reform: The in-between worlds of Albanian educational policy-makers and professionals. Comparative Education, 51(2), 276–292. Groce, N. E. (1985). Everyone Here Spoke Sign Language: Hereditary Deafness on Martha’s Vineyard. Cambridge, MA: Harvard University Press. Hannerz, U. (1996). Transnational Connections: Culture, People, Places. London: Routledge. Ingstad, B. & Whyte, S. R. (Eds.) (1995). Disability and Culture. Berkeley, CA: University of California Press. Ingstad, B. & Whyte, S. R. (Eds.) (2007). Disability in Local and Global Worlds. Berkeley, CA: University of California Press. Jenkins, J. H. & Barrett, R.J. (Eds.) (2004). Schizophrenia, Culture, and Subjectivity: The Edge of Experience. Cambridge, UK: Cambridge University Press. Karma Phuntsho (2013). The History of Bhutan. New Delhi: Random House India. Khyentse Norbu (Writer & Director). (2003). Travellers and Magicians [Motion picture]. Bhutan: Zeigeist. Kohrman, M. (2005). Bodies of Difference: Experiences of Disability and Institutional Advocacy in the Making of Modern China. Berkeley, CA: University of California Press. LeFanu, G. (2013). The inclusion of inclusive education in international development: Lessons from Papua New Guinea. International Journal of Educational Development, 33, 139–148. LeFanu, G. (2015). Imagining disability? Conceptualizations of learners with disabilities and their learning in the pedagogic manuals of international development agencies. International Journal of Educational Development, 40, 267–275.

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Schuelka, M. J. (2014). Constructing Disability in Bhutan: Schools, Structures, Policies, and Global Discourses (PhD dissertation), Minneapolis, MN: University of Minnesota. Schuelka, M. J. (2015). The evolving construction and conceptualization of disability in Bhutan. Disability & Society, 30(6), 820–833. Schuelka, M. J. (2018). The cultural production of the ‘disabled’ person: Constructing student difference in Bhutanese schools. Anthropology and Education Quarterly, 49(2), 183–200. Schuelka, M. J. & Maxwell, T. W. (Eds.) (2016). Education in Bhutan: Culture, Schooling, and Gross National Happiness. Singapore: Springer. Seth, S. (2007). Subject Lessons: The Western Education of Colonial India. Durham, NC: Duke University Press. Shapiro, J. P. (1994). No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: Three Rivers Press. Singal, N. (2010). Doing disability research in a Southern context: Challenges and possibilities. Disability & Society, 25(4), 415–426. Singal, N. & Jeffery, R. (2011). Inclusive education in India: The struggle for quality in consonance with equity. In A. J. Artiles, E. B. Kozleski & F. R. Waitoller (Eds.), Inclusive Education: Examining Equity on Five Continents (pp. 161–183). Cambridge, MA: Harvard Education Press. Sutton, M. & Levinson, B. A. U. (Eds.) (2001). Policy as Practice: Toward a Comparative Sociocultural Analysis of Educational Policy. Westport, CT: Ablex. Tsing, A. L. (2005). Friction: An Ethnography of Global Connections. Princeton, NJ: Princeton University Press. UNESCAP [United Nations Economic and Social Commission for Asia and the Pacific] (2012). Incheon Strategy to ‘Make the Right Real’ for Persons with Disabilities in Asia and the Pacific. Bangkok: United Nations. Vavrus, F. (2004). The referential web: Externalization beyond education in Tanzania. In G. Steiner-Khamsi (Ed.), The Global Politics of Educational Policy Borrowing and Lending (pp. 141–153). New York: Teachers College Press. Vavrus, F. & Bartlett, L. (2006). Comparatively Knowing: Making a Case for the Vertical Case Study. Current Issues in Comparative Education, 8(2), 95–103. Vavrus. F. & Bartlett. L. (Eds.) (2009). Critical Approaches to Comparative Education: Vertical Case Studies from Africa, Europe, the Middle East, and the Americas. New York: Palgrave Macmillan. Willinsky, J. (1999). Learning to Divide the World: Education at Empire’s End. Minneapolis, MN: University of Minnesota Press. Yin, R. K. (2014). Case Study Research: Design and Methods (5th Edn.). Thousand Oaks, CA: Sage. Zangley, D. (2016). The history and development of monastic education in Bhutan. In M. J. Schuelka & T. W. Maxwell (Eds.), Education in Bhutan: Culture, Schooling, and Gross National Happiness (pp. 39–56). Singapore: Springer.

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Diversifying Theoretical Commitments for a Transnational Inclusive Education: Lessons from India Srikala Naraian (Columbia University)

Introduction The documentation of inclusive education efforts across world contexts has increasingly disclosed a wide variance across nations (e.g. Ahsan & Mullick, 2013; Florian & Rouse, 2009; Kim, 2013; LeFanu, 2013; Singal, 2006). For instance, while Germany and Belgium rely heavily on special schools, Sweden and Norway do so to a much lesser extent (World Health Organization and World Bank, 2011). Additionally, inclusion within the Global South has surfaced complexities and contradictions that illustrate the tensions between regional priorities and international prescriptions for inclusive schooling (Bartolo, 2010; Kisanji, 1998; Urwick & Elliot, 2010). International recommendations for inclusion that have emerged largely from research in the Global North typically call for a wholesale reform of schools to dismantle the deficit-oriented sorting and categorizing impulse of school systems. Inclusive education, clearly, has been taken up differently around the world (Kuppis & Hausstatter, 2014). For some, its association with disability means that inclusive education and special education are tightly coupled such that separate services and facilities for students with disabilities may still be brought under the umbrella of ‘inclusive’ education. For other advocates, it signifies access to education for all students with a particular emphasis on those from historically marginalized groups. For still others, it primarily means recognizing the heterogeneity of all learners calling for a ‘non-categorical’ approach that shuns the classification and sorting of individual differences among students along the lines of race/ethnicity, gender, class, ability, etc. (Ainscow, 2014; Booth, 2009; Kuppis & Hausstatter, 2014). The range of meanings of inclusive education in operation around the world may owe in part not only to the diversity of economic and sociocultural conditions within which they are implemented but also to the particular motivations that stimulate its adoption in various regions. For instance, the period of international development activity after the Second World War saw the creation of many United Nations agencies

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as well as other multinational groups such as the World Bank to advance economic and social development particularly in regions of the Global South. The ‘spread’ of inclusive education, then, may partially be accounted for by agreements made by resourcedependent nations with multinational economic alliance groups such as the World Bank and International Development Agencies (IDA) (Bartolo, 2010; Chabbott, 2014; Das & Randeria, 2014; Le Fanu, 2013). In more concrete terms, even though many countries within the Global South have become signatories to the Salamanca Statement, their adoption of inclusive education policies may not quite serve as an instance of volitional educational ‘policy borrowing’. Rather, it remains an ingredient within ‘policyscapes’ that implicate processes of power within global movement of monies and ideologies, national legislative developments, multinational modes of organization, international donor policies, donor ‘logic’ and new forms of governmental administration (Carney, 2009; Steiner-Khamsi, 2006). The conditions of schooling and dis/ability within many of these regions in the Global South are typically inseparable from a range of other social priorities that may include delivering access to education to children from all marginalized groups, countering poverty and communal differences, raising literacy, designing adequate professional preparation and empowering communities, among others (Charema, 2007; Grech, 2011; Kalyanpur, 2008; Miles, 2009; Peters, 2007). Such conditions complicate the pursuit of inclusive education agendas making cross-national comparisons difficult. For instance, inclusive policies might be oriented to the wholesale multisector transformation of schools in some states or simply the provision of specialized supports for students with disabilities in others. For researchers and policymakers, these diverse priorities underscore the importance of incorporating a range of interacting dimensions within comparative analyses of inclusive schooling across national contexts (Winzer & Mazzurek, 2012). Additionally, they call for theories that can be responsive to the ambiguity and fluidity of practising inclusive education in un-formulaic ways under continually shifting conditions. My experiences in India, first as an activist educator, then as a US-based researcher in Chennai and subsequently as a Fulbright Specialist at Ravenshaw University in Odisha, India, have confirmed for me that describing inclusive education in the Global South must go beyond the conventional explanation that the political, economic and sociocultural conditions in these settings constrain the successful implementation of inclusive schooling. Assuming this approach as flawed, I have presumed that ‘[our] starting point for global social justice must not be that impoverished states and people lack resources (either through their own doing or our doing) to meet their needs’ (Robinson, 2005, cited in Miller 2011, p. 402). Indeed, such explanations adopt a deficit lens towards these regions characterizing them as inadequately prepared for inclusion as defined by Northern scholarship and as producing little that can be theoretically significant to the field. Additionally, even as I locate myself as a researcher within the tradition of disability studies in education (DSE) emergent in the United States and Europe, I am also mindful of the risks of oversimplification that may arise by relying solely on its tenets. For instance, describing the efforts of an NGO during my research from a purely DSE perspective inevitably would mean characterizing them as thinly masked traditional

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special education thinking and practice, since they do not reflect the radical shift in conceptualizing dis/ability on which inclusive education is predicated (Naraian, 2013; Naraian & Natarajan, 2013a; Slee, 2011). Instead, I have tried to take up a ‘doubled reading’ (Lather, 2007) that requires me to continually interrogate my own research impulses as I interpret the meanings of inclusive education I encounter in India. I seek explanations that can subsume the complex historical and material conditions which inform the work of all actors – researchers, policymakers, educators, students and their families – and which could disclose their experiences as having epistemic significance for the field. In doing thus, I am simultaneously reluctant to see the conditions of inclusive practice in one part of the world as somehow separate from another. I do not take up, as Mohanty (2003) suggests, a ‘tourist’ model whereby a survey of inclusive education within different regions can cursorily stimulate one’s interest but leaves the core premises of the field untouched. Rather, I follow Mohanty in understanding that the differences between contexts are mutually constituted and are always existing in relation to each other. The progress and development of inclusive education in India, for instance, remains connected – locally, nationally and globally – with development of inclusive education in countries within other regions in the world. The aim of this chapter, therefore, is to take up the affordance of the Global South to stimulate theorizing towards a transnational inclusive education that can be responsive to a range of sociocultural contexts across the world.

The affordance of the Global South for a transnational inclusive education The ‘materiality’ of research and inquiry Grech (2011) has critiqued the universalizing dominant discourse emergent from Northern disability studies that has failed to fully address the complex conditions within the Global South. Distinguishing between majority (Southern) and minority (Northern) world views, he notes, ‘if disability studies is “framed within a minority world view”, then it implies that it is theoretically ill-equipped to deal with majority world views and the nuances of majority world contexts (historical, social, economic and political)’ (Grech, 2011, p. 88). The scholarship on inclusive education has been perceived as upholding this ‘minority world’ view that only partially explains the experiences of researchers, educators, policymakers, students with disabilities and their families in the Global South (Kisanji, 1998; Miles, 2009; Urwick & Elliott, 2010). In other words, the discrepancies between these varying world views must inevitably reflect the material conditions within which they are formulated (Hau, 2000). The conditions that characterized the emergence of a disability studies–informed inclusive education in regions such as the United States referenced the particular historical, legal, social and cultural specificities of that region (Ware, 2010). For instance, the critiques of special education epistemologies and the historical practices they engendered occurred within the context of a public schooling system that remained

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culturally and politically a relatively stable normative structural unit. In India, however, within a system that subsumes two distinct and parallel streams – government-run schools and private fee-paying schools – access to education itself remains highly inequitable across gender, class and other social categories (World Bank, 2009). The total number of primary and lower secondary school-aged out-of-school children in India is about 17.8 million (UNICEF, 2014). The average out-of-school rate for children with disabilities is five-and-a-half times the rate for other children with more than 60 per cent of children with multiple and intellectual disabilities out of school (WHO and World Bank, 2011). Students with disabilities enrolled in elementary classes in both government and private schools constitute only 1 per cent of the total enrolment – about 1.55 million in 2007–2008 (District Information System for Education, 2011). Such data index an educational system that is itself mired in complex needs, making expectations of wholesale multisector transformation of schools in the pursuit of inclusive education far-fetched and untenable. Furthermore, as I illustrate later in the chapter, regional politics within the academy has subordinated certain disciplines, such as the sociology of education (Nambissan & Rao, 2013). This in turn has triggered particular forms and structures of teacher preparation where disciplinary foundations are weakly established (e.g. separating the geographical location of teacher preparation programmes from university-based sites). This results in an emphasis on teachers as technicians thereby reinforcing the theory-practice divide. Additionally, it generates methodological directions in research that further widen the gap between Northern and Southern inclusive education scholarship (Naraian, 2016b). Any scholarly appraisal, therefore, of the development of inclusive education in India must reflect the social-political-historical conditions within which actors (policymakers, educators, individuals with disabilities and their families) take up the processes of inclusive education and the fluctuating meanings of ability, disability and normalcy they concomitantly generate. In other words, we need to attend to the effects of social locations that can ‘facilitate or inhibit knowledge by pre-disposing us to register and interpret information in certain ways’ (Hau, 2000, p. 161). Describing experiences of disability within majority world contexts therefore calls for epistemologies that can be responsive to such variable material conditions.

Negotiating complexity within minority and majority worlds: Theorizing the microprocesses of inclusion The relevance of such new ways of knowing, however, is not restricted to describing majority world contexts. By subsuming the historical-material contexts within the ‘becomings’ (Erevelles, 2011) of all actors including scholars, educators, students with disabilities and their families, these new frames of knowing can afford deeper insights into the complexities of enacting inclusive education anywhere. Inasmuch as such inclusive education scholarship may have originated within the Global North, conditions within schooling systems in these regions continue to defy a record of easy implementation. While many scholars lay out key principles for the enactment of inclusive education (e.g. Booth & Ainscow, 2011; Sapon-Shevin, 2014; Slee, 2011), the complexity of educators’ efforts to transform practices within inhospitable schooling

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conditions remains largely unexplored and has been under-theorized (Waitoller & Kozleski, 2013). This is particularly relevant as teachers’ commitments to equity are challenged by competing interests within the field of education. The increasing privatization of teacher preparation across world contexts, the growing corporate influence on school reforms and the sustained focus on standardized testing of students as a means to ensure teacher effectiveness serve as reminders that the principles of inclusive education that are premised fundamentally on a vigilance of an ideology of ability are continually under threat (Cochran-Smith, Piazza, & Power, 2013; Ravitch, 2013; Siebers, 2008). These material conditions of schooling inevitably mean that commitments to inclusive education are deposited at the nexus of diverse and competing priorities. Mandates for objective student measurement, public scrutiny of teacher competence and heightened parent accountability must coexist alongside commitments to equity for students and families who experience marginalization in schooling communities. The negotiations into which educators must enter to accomplish these conflicting aims call for deeper understandings of the microprocesses by which inclusive principles are enacted in everyday contexts (Stillman, 2011). Current inclusive education theorizing, however, offers few ways by which teachers can successfully navigate these competing positions. Its forward view towards idealized practices frequently leaves its offerings unrecognizable within imperfect schooling contexts. Not surprisingly, in the United States, for instance, inclusive education continues to be translated as the placement of students with disabilities in general education classrooms rather than as instructional/ curricular practices for all students that work against normative notions of ability/ disability (Naraian, 2016a). This in turn generates categories of students who are perceived as either capable of succeeding in inclusive classrooms or as requiring more restricted spaces. Such presumably flawed implementation of inclusive education, whether in New York City, Chennai or Reykjavik, may be only partially accounted for by the (un) availability of political, socio-economic and cultural resources within these regions. Of equal significance is that such implementation is informed by multiple ideological positions and epistemological stances which both researchers and practitioners must take up thoughtfully. Understanding this process requires a reappraisal of the capacity of inclusive education scholarship – largely ‘framed within a minority world-view’ (Grech, 2011) – to accommodate the complexities of regional contexts. Are the ways of knowing reflected within such a minority world view sufficient for local actors anywhere to embrace and unproblematically take up the principles of inclusion? Or, can the challenges to the tenets of inclusive education posed by contextual specificities across majority and minority world contexts stimulate deeper examination of the nature of transgressive practice for inclusion itself? As we prepare teachers to take up inclusive pedagogies within deeply complex and always imperfect contexts, we particularly require theoretical frames that will support an understanding of their work that privileges their agency and their capability to bring about change. My argument for diversifying theoretical commitments within inclusive education, though triggered undeniably by my experiences within the Global South, extends beyond that to speak to the capability of inclusive education theorizing to have

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sufficient elasticity to encompass agency – of teachers, students with disabilities and their families as well as researchers and policymakers – within a range of sociocultural contexts. In the following pages, I describe some of the learnings from US Third World feminist scholarship that can afford inclusive education scholars/practitioners tools to navigate the complexities of schooling contexts in principled ways. Whenever possible, I draw on the experiences of educators, students with disabilities and families whom I encountered in Chennai, India, to illustrate the significance of these concepts and their generativity for inclusive practice. Within these families (mostly working class and lower middle class as understood within that region), mothers played a pivotal role in the creative management of their children’s educational programming. Additionally, congruent with the historically gendered nature of schooling work in other parts of the world, the activist educators I encountered were mostly women (largely upper and lower middle class). Collectively, the experiences of these local actors offered a unique epistemic position, a way of knowing how to engage with inclusion within complex conditions. Their particular experiences are presented here not to suggest their generalizability to other regions but to evoke new meanings of transgressive practice that can stimulate inclusive education efforts across contexts.

‘On both shores at once’: US Third World feminism At some point, on our way to a new consciousness, we will have to leave the opposite bank, the split between the two mortal combatants somehow healed so that we are on both shores at once and, at once, see through serpent and eagle eyes. (Anzaldua, 1987, p. 100)

US feminists of colour have long argued for an understanding of women’s experiences that differed from white feminist positions and which extend beyond a simple acknowledgement of the diversity within the feminist movement (e.g. Anzaldua & Keating, 2002; Hurtado, 1996; Mohanty, 2003; Sandoval, 2000). Sandoval (2000) has argued that there has been little recognition of its implications for reimagining resistance to structures that oppress women. She proposed that within the writings of US Third World feminists lay the core principles of a methodology of resistance that can serve any social justice movement. These scholars call for an understanding of global struggles based on the unique location and histories of women of colour in the United States and Third World contexts. Mohanty (2003) describes the everyday experiences of these women whose lives are more closely regulated by state apparatus than white women, as marked by a ‘simultaneity of oppression’ that leaves them fluent in the techniques of ‘urban guerillas’ (Hurtado, 1996). As these women engage with oppressive structures, their forms of resistance are less likely to occur in publicly organized ways but instead in the myriad day-to-day practices of their lives. Such daily struggles, Third World feminist scholars argue, leave individual subjectivities in a diffused and fluid state. Minh-ha (2011) addresses this ambivalent, amorphous state as she contemplates the experiences of immigrants and refugees of

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colour and their relationship to a ‘home’. She observes that the static concept of ‘home’ may refer to an illusory place; home itself has no fixed boundaries. ‘The meanings of here and there, home and abroad, third and first, margin and center keep on being displaced depending on how one positions oneself ’ (2011, p. 39). Travelling itself then becomes a form of ‘dwelling’ or a state of ‘home’ – a state of in-between, of neither here nor there, but elsewhere within here and elsewhere within there. To travel in this manner can be a profoundly unsettling experience, leaving one’s self with no fixed boundaries. Yet it remains integral to the work of educators, students and families in many parts of the world. For instance, in Chennai, India, I found that the responsibility to ensure physical and curricular accessibility for their offspring that was laid on families propelled them into unfamiliar territory, requiring them to assume new and unexpected roles and positions (Naraian, 2013). Whether it meant accepting the role of ‘ayah’ or maid (a diminished social location in this context) in the school, convincing reluctant tutors that despite non-normative speech patterns, their children were academically capable, reluctantly prioritizing curricular accessibility over music or fine arts education, or rationalizing a return to a segregated setting after an inclusive experience, the inability of educational institutions to provide accessible learning contexts for their children with disabilities called for families, particularly mothers, to respond in unexpected ways. It necessitated that families move continually between new and unfamiliar conceptions of parenting and normative expectations of themselves, their children and others. For Anzaludua (1987), this state of being reflects the consciousness of the borderlands where there is no safety in either side. As these women come to understand that their experiences no longer permit them to receive and apply ideas in the same fixed ways as they might have before, they begin to develop a new consciousness – the mestiza consciousness – that has a high tolerance for contradictions and for ambiguity, and the capacity for assuming new forms. Such a woman becomes a nahual (shape-changer) and is able to transform herself into ‘a tree, a coyote, into another person’ – a continual process of stretching and remaining flexible where ‘nothing is thrust out, the good, the bad and the ugly, nothing rejected, nothing abandoned’ (1987, p. 101). Though painful, the empowering potential of this ambiguous space lay in the creativity made possible by being freed from pregiven positions. Besides surfacing in the experiences of families, such a mestiza consciousness was also clearly a requirement for activist work in the Indian environment. In Chennai, for instance, the process of securing admission for a student with disabilities into a mainstream school was complicated, requiring skilful negotiation on the part of educators and families. The decision to place a child in a general education setting always raised intractable dilemmas. Though historically excluded categorically from schools, students with disabilities had, in recent years, begun to receive greater consideration for admission. Newly enacted laws had emboldened activist educators and families, even though such laws did not guarantee admission in these schools. Consequently, educators had to engage in a process of persuasion, which might imply mounting a defence of the student’s ability to succeed, thereby minimizing his or her disability and subscribing to ‘readiness’ models of inclusion. Yet they were simultaneously compelled to be cautious about adopting an uncompromising rights-based approach. Rupa, an

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inclusion facilitator who was also a blind, disability rights activist, explained: ‘Yes, you have the right, OK, but it is something which has to come from the heart. I can’t get my kids all alone over there with a principal who doesn’t agree with inclusion, can I?’ In other words, promoting inclusion clearly entailed straddling competing visions and a process of negotiation that was uncertain and unpredictable (Naraian, 2013).

An oppositional agency The obligation to remain on both shores at once clearly invokes a form of agency that lies at some odds with exhortations to teach against the grain that inclusive educators are generally encouraged to take up in their commitments to an anti-ableist, antioppressive pedagogy (Danforth & Naraian, 2015). Yet as US Third world feminist writers illustrate, the particular experiences of women within hugely oppressive contexts disclose oppositional agency to be multiple, fluid and even contradictory. Such agency is complex, improvisational and never predictable. Sandoval (2000) uses the experiences of Third World peoples to propose differential consciousness as a methodology for oppositional engagement. Such a consciousness is differential in that it calls for movement between, through and within ideological positions. Drawing its conceptual origins in the struggles of Third World peoples, it requires the practitioner to read each situation of power and to deliberately select the best ideological position that can mitigate oppressive forces. This assumes that ideologies can collectively be transformed into a ‘tactical weaponry’ (Sandoval, 2000) that can be employed in the struggle of social justice. When adopting oppositional tactics, such a consciousness requires ‘grace, flexibility, and strength’ to commit to one identity with the possibility of assuming another at any time; to transform that identity in response to changing power dynamics; and to recognize the necessity of building alliance with other groups when demanded by new power configurations. To enact such a consciousness is deeply ambivalent and always uncomfortable. Inasmuch it requires such alliances, it can also never condone injustice. Still, even as we have to demand recognition of the injustices that are repeatedly committed, we simultaneously have no choice but to ‘cross over, to make a hole in the fence and walk across, to cross the river, to take that flying leap in the dark’ (Anzaldua, 1987, p. 71). Such a stance is not intended to simply romanticize the everyday acts of resistance carried out by individuals but to recognize that such acts evoke sites of transformation and in that regard deeply impact people’s identities as they carry out such work. Again, this is illustrated in the experiences of families in Chennai who continually criss-crossed geographic and ideological boundaries in their efforts to secure inclusive opportunities for their children. For example, Miriam, a parent from an orthodox religious, primarily rural community, spoke with pride at her decision to raise her children singly in a large metropolis contrary to the advice of elders in her family. She did so to enable her son Zaheer, currently included in college, to benefit from the educational support provided by an NGO in the city. Her observation, ‘getting permission to stay alone with kids in this city is a great thing’, indexes stories of liberation that often remain hidden within public accounts of progress in inclusive schooling (Naraian & Natarajan, 2013b).

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Coalescing around needs and interests An oppositional engagement or consciousness implies a coalitional orientation to one’s equity-minded work. Rather than rally around some unique essential experience that distinguishes a particular group over others (e.g. a disability identity), practitioners are required to engage across different groups, categories and experiences. In other words, they are asked to draw on a politics of engagement (Mohanty, 2003) rather than on an identity politics that prescribes essentialized meanings of experience; for example, to be disabled is to be oppressed. Such a politics of engagement is derived from the fact that activist educators are inevitably embedded within a collectivity of multiple interests and needs. For instance, in the previous example, seeking to include a disabled student required educators to negotiate with the unique socioculturally mediated needs of the family, the particular demands of the school, the requirements of the law as well as local understandings of disability. Negotiating these competing claims requires educators to adopt a coalitional consciousness when seeking an inclusive outcome for the student. Adopting a coalitional consciousness in working towards equity means that activists must speak from within such a collective of needs and expectations to achieve the ‘political solidarity that is based on shared material interests and identity, and common ways of reading the world’ (Mohanty, 2003, p. 145). The educators could not, as Rupa noted, push aggressively on behalf of the student’s right to be included without a consideration of school demands and family priorities. How will educators adjudicate across these competing needs when determining an appropriate course of action? According to Mohanty (2003), while common interests are derived from the particular historically mediated experiences of a group, needs/desires reflect the subjective meanings of those interests for individuals that stem from their unique social location(s). So, for instance, educators may be acutely aware of the ongoing forms of oppression and exclusion that disabled individuals have historically experienced on social, political and economic fronts. Such recognition demands a commitment to socially just pedagogies that can surface the subjugated understandings of individuals with disabilities and locate them more centrally within mainstream community life. Yet even as such common interests (i.e. a commitment to inclusion and socially just pedagogy) may bring different groups (teachers, students, families) together, it is equally likely that, depending on the multiple social locations of individuals within those groups across class, gender, race/ethnicity, etc., each of these groups may interpret those interests differently. In the stories of the families from Chennai who were supported by inclusively oriented activist educators, a single working mother’s decision to leave her autistic son in a specialized setting reflected needs/desires that differed sharply from the decision of another affluent family to push for inclusive opportunities for their multiply disabled daughter in schooling and employment (Naraian & Natarajan, 2013b). In other words, educators are required to recognize that commitments to abstract ideals of social justice may not neatly align with the needs/desires of particular individuals/groups. Yet supporting those needs/desires is also not a failure of commitment to those ideals. Instead, a paradigm of solidarity justice calls on educators

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to ‘transform their own identities so that they re-conceive what their common interests are’ (Ferguson, 2009, p. 172). Acknowledging the multiple threads within individual narratives of empowerment, educators can legitimately focus on affording students and families opportunities to transform their material experience of schooling. They do so by moving differentially, that is, through multiple ideological positions, using available resources, options and opportunities. This might mean, for instance, taking up instructional practices that are both behaviourist and constructivist, or models of delivery that locate instruction both within and outside mainstream classrooms. When teachers recognize and work through the competing bodies of knowledge that constitute a community at any given moment and place in time, they are exercising a form of collective agency that avoids a polarized response. Feminist paradigms of global justice are premised on such local understandings of need that evoke multiple and unpredictable forms of agency (Miller, 2011). A consideration of needs may also be subsumed within a commitment to care that remains part of the intellectual foundations of inclusive education (Danforth & Naraian, 2015). Advancing a cosmopolitan care that ‘stems from a relational social ontology’, Miller (2011, p. 396) privileges a ‘nonidealized reality of interdependent, vulnerable, moral agents with inevitable needs’ (2011, p. 397). Her conception of caring justice assumes needs as always context-specific and as located within relations of power and control. Within the duty to care proposed by Miller, the response to a person’s needs is driven by the goal to bolster his or her agency and establish/restore that person’s selfdetermination. The anchoring of need within agency offers an additional route for educators to recognize both its relation to, and its distinction from, the kind of abstract interests that may drive professional commitments to inclusive schooling. When a family requests forms of service for their child that are outside the realm of humanist/constructivist pedagogies generally favoured by inclusive educators, it is the assessment of the ways in which such service might fortify the agentive functioning of the family, rather than accomplish greater equity for all disabled individuals, which leaves the educator within the provenance of inclusive education. So, for instance, when Archana sought to remove her son from an inclusive setting in order to get him access to supports in the areas of functional skills development, she was acknowledging her anxiety about the inability of school systems to recognize both academic and therapeutic activities as curricular needs for students with disabilities. The exclusive focus on academic preparation within his experience of ‘inclusion’ had resulted in her son, Arun, remaining unable to manage his personal needs independently. The partial return to a segregated setting would, for Archana, restore some confidence that Arun could be better equipped for a future after school (Naraian & Natarajan, 2013b). The significance of a linkage between care, needs and agency that is context-specific, as Miller suggests, further emerged in the disclosure of students with disabilities in Chennai about their relationships with peers. Almost all students unproblematically and willingly acquiesced to friendships with peers that were premised on relations of helping, despite their educators’ deep discomfort in such unequal relations. Yet the rationales extended by the same youth was their desire for ‘normalcy’; ‘help’ afforded an entry into their peer communities that then allowed them to experience the world as understood by their peers. Amrita, a student who had complex physical and

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communication disabilities, shared examples of how her peers had taken ownership of arranging for her participation in peer activities. She noted that ‘in the beginning, I got sympathy and made friends, and then it changed to understanding’. Amrita seemed to suggest that a ‘helping’ response and the gift of friendship were not mutually exclusive. It was simultaneously clear that the care provided by her friends to meet her particular needs enabled her to assume a valued position within that community (Naraian & Natarajan, 2013a). Families of disabled students, too, recognized the pragmatic benefits of peer help and were more likely to be disturbed by the absence of moral commitment on the part of peers to extend such support.

‘World-traveling’ through narrative The experiences of these youth, and that of educators and families, suggest that narrative is a crucial mode for disclosing diverse meanings of ability/disability and inclusion. Mohanty (2003) argues for the significance of the narratives of experience of marginalized women in Third World contexts, not because of their capacity to disclose some ‘truth’ but because of the complexities they surface that are often missing in larger political debates. She advocates for a notion of experience that is always historically mediated and materially constituted. For instances, the gendered histories of parenting in India as well as the particular relations between professionals and families in that context had real material consequence for the experiences of the mothers in Chennai struggling to achieve inclusive outcomes for their children. Such everyday experiences of struggle and oppositional activity, Mohanty argues, collectively constitute a way of knowing about the world. In that sense, by privileging their experiences, Mohanty argues for the epistemic significance of the social locations of these women. Moya (2000) describes the ways in which Chicana feminist writers like Cheri Moraga and Anzaldua narrate their experiences and which have permitted them to disclose the multiple and competing ways in which women experience their oppression. Their conceptualization of such experiences is rooted in a ‘theory of the flesh … where the physical realities of our lives – our skin color, the land or concrete we grew up on, our sexual longings – all fuse to create a politic born out of necessity’ (Moraga, cited in Moya, 2000, p. 93). Such unpredictable narratives offer insights that can complicate universalizing theories. In other words, the ‘multi-locationality’ (Brah, 2003) of individuals as they navigate shifting positions along class, race/ ethnicity, gender, etc. produces many constructions of experience that defy essentialist understandings of privilege and oppression. So though the frame of oppression may be used to understand the experiences of marginalized peoples, whether Third World women or individuals with disabilities and their families, it may be insufficient to capture the breadth of their meanings. The emphasis on narratives of experience has particular relevance for educators as they begin to take up the ambiguous space of the differential consciousness. It calls for what Maria Lugones (1987) describes as ‘world-traveling’. Lugones draws on the experiences of women of colour, who are positioned as outsiders to the mainstream but who must move between different worlds. She argues that the flexibility in moving between such positions delivers a unique perspective; it allows individuals to be

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understood in loving rather than in ‘arrogant’ ways. Such ‘loving perception’ means that we can identify with individuals within those worlds, unlike an ‘arrogant perception’ which describes individuals in ways that leave the speaker untouched. Instead, she notes: ‘We are fully dependent on each other for the possibility of being understood and without this understanding we are not intelligible, we do not make sense, we are not solid, visible, integrated, we are lacking. So traveling to each other’s “worlds” would enable us to be through loving each other’ (Lugones, 1987, p. 8). Such ‘world-traveling’ calls for the listener-educator to situate herself within the life histories of the actors whom she seeks to represent. It calls for an openness to receive the experiences of other agents in ways that are not ‘finished off ’ in formalistic categories that leave the worlds of the speaker and the subject separate and disconnected. In that regard, it is based on leaving oneself open to self-transformation when upholding a commitment to solidarity and justice (Ferguson, 2009). For teachers, such ‘worldtraveling’ means that one must be careful when characterizing the experiences of students, their peers and families, given that customary discourses of schooling may be unmindful of the unique ways in which their narratives have evolved. A parent may be neither ‘heroic’ nor ‘in denial’ just as there may be complex reasons behind a peer’s refusal to sit beside a student with disabilities. Attending open-endedly to their narratives can disclose new ways of understanding them and identifying new forms of support. For researchers, it means bringing to the inquiry of disability experiences in schools an openness to receive meanings that may sit at odds with a disability studies discourse but which may invoke socio-historically mediated experiences that can be generative for advancing the field.

Teacher preparation within/for sociocultural complexity: Reflections on the Indian context The tenets of Third World feminism, some of which were introduced in the preceding section and illustrated by the experiences of actors in India, offer tools that may be taken up by educators anywhere. In this section, I draw on the same tenets to explore its implications for teacher preparation for inclusive education in India while simultaneously advancing a transnational perspective. I first offer a cursory review of the structural context of such teacher preparation.

The structural context of teacher preparation for inclusive education in India The research on teacher preparation for inclusive education in India calls for the development of a stronger pedagogical repertoire for teachers to support students with disabilities, greater contact with individuals with disabilities within preparation programmes to stimulate different attitudes and improved practicum experiences to develop competence and raise levels of confidence in novice teachers (Devi, 2013; Kumar & Kumar, 2007; Lenka & Parua, 2012; Sharma, Moore, & Sonwane, 2009). Though integration and inclusion are often used interchangeably in the literature, there appears to be a general agreement on the broader meanings of inclusion; that is, inclusive

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schooling requires large-scale transformation of schooling so that everybody is welcomed and made to feel like a valued learner and where diverse abilities are embraced. The literature also suggests that change in attitudes is a key determinant for inclusion. This is congruent with the findings from international research on effective teacher preparation for inclusive education (Costello & Boyle, 2013; Sharma, Forlin, & Loreman, 2008). Even as these writers recognize that shifting teacher attitudes towards disability is crucial, the ability-based foundation of schooling policies in India remains weakly acknowledged within this body of work (Slee, 2011). This is not surprising, given that the scholarship on teacher preparation for inclusive education makes a weak acknowledgement, if at all, of the historical and sociological context of schooling in India. To a significant extent, schooling dilemmas facing inclusive educators today, such as the primacy of the textbook, the ubiquity of the examination within schooling processes and the disempowered location of the teacher in relation to state mandates, emerged from discourses around schooling that originated in precolonial times (Kumar, 2005). Current legislative priorities of schooling can be traced back to such precolonial and colonial discourses that sanctioned hierarchical forms of relations both within local cultural communities and between school and state (Kumar, 2005; Nambissan & Rao, 2013). Additionally, at the dawn of independence (in 1947), the task for policymakers was driven primarily by the concern to raise the social status of specific socially defined categories of individuals including Dalits and those from ‘scheduled castes’ and ‘scheduled tribes’ (Singal & Jeffrey, 2011). A complex machinery of regulatory bodies and resource institutions was set up in the post-independence era to support the development of schools and teachers across the nation, emerging through a series of structural changes recommended by successive reports commissioned by the government of India (Arora & Panda, 2002). The development of this machinery designed for particular outcomes spawned concurrent dilemmas for teacher preparation within this context (Naraian, 2016b). Some significant challenges that have been identified include not only the abstract nature of theory-dominant courses that are disconnected from the actual contexts of schooling but also the absence of a strong emphasis on reflective inquiry (Government of India, 2012). Additionally, the separation of teacher preparation institutions from higher education means that such institutions remain separated from the knowledge production within the field of education (Government of India, 2012; National Council for Teacher Education, 2009). Teacher education programming, therefore, has been critiqued for its impoverished curriculum and its inability to generate reflective practitioners who can bridge theoretical constructs with practical competencies (Government of India, 2012; Sriprakash, 2012). Ethnographic accounts of teacher practices have disclosed over-reliance on rote memorization, lack of empathy with students, prejudicial behaviours and low content knowledge; they also index a pervasive policy climate of deskilling teachers resulting in lack of professional autonomy and their disempowerment (Dyer & Choksi, 2004; Sriprakash, 2012). Reflective exercises that can support practising teachers to engage with their prior beliefs and assumptions (Miles, 2009) are practically unknown. This is an admittedly cursory glimpse into the context within which inclusive education in India must be examined. Still, locating inclusive education practices

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within this context renders it unsurprising that they continue to resemble deficitoriented practice (Kalyanpur, 2008; Singal & Jeffrey, 2011). With a few exceptions, inclusive schooling within policy rhetoric also largely remains at the level of ensuring the presence of students with disabilities in mainstream environments, rather than a reexamination of the ways in which norms of ability structure the system itself (Ministry of Human Resource and Development, 2005). Policy directives speak interchangeably of national norms of inclusive education, mainstreaming, appointment of special education teachers, provision of resource rooms, etc. It is clear that inclusive education continues to remain tightly coupled with special education in programming for teacher preparation.

‘Oppositional’ consciousness for teacher education in India and beyond: Some lessons from the ground Within Northern scholarship, the premise of teacher preparation for inclusive education is that through careful socialization into anti-oppressive discourses, teacher candidates will develop the capacity to go forth into troubled schooling systems and actively work against practices (general or special) that perpetuate norms of ability/ disability (Booth, Nes, & Stromstad, 2003; Slee, 2011). Given the context of teacher education presented above, the relevance of such assumptions for teacher preparation for inclusive education in India may not be quite so self-evident. On the contrary, the unproblematic sanctioning of deficit-based practices derived from current policies clearly places inclusive education within the house of special education. What does this mean for inclusively oriented educators? What can we learn from the work of activist educators and families that can inform teacher preparation? While further research is needed to consolidate our understandings of the affordances of US Third World feminism for teacher preparation, I explore a few directions here. Most importantly, such a lens allows the disclosure of transgressive themes embedded in efforts towards inclusive education that may otherwise remain obscured by Eurocentric notions of resistance to oppressive discourses and practices. For instance, the relevance of a ‘methodology of the oppressed’ (Sandoval, 2000) to describe such efforts lies in its capacity to accommodate the social conditions in which such work is often accomplished, as well as its insistence on agentivity within those processes. Such agentive work may assume vastly divergent forms for different groups (i.e. students, families and educators). For instance, the acts of negotiation undertaken by activist educators in India were sometimes contradictory and often unprecedented. Their forced collusion with deficit discourses of disability and weak models of learning prevalent in schools may well have constituted a necessary masquerade (Siebers, 2008) to engage these institutions in the process of changing their cultures (Naraian, 2013). In that regard, their efforts may be subsumed within a ‘tactical weaponry’ (Sandoval, 2000) that allows teachers caught in the mid of competing priorities to navigate different ideological systems as they seek more equitable opportunities for students with disabilities in mainstream schooling communities. A preparation for inclusive education in India (and other regions of the world) might well have to consider that a commitment to equity subsumes both general and special education processes and

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practices, though always linked by a continual vigilance of, and attention to, ability norms. The oppositional agency inherent within this kind of work was illustrated by the experiences of families as they negotiated with educational systems (Naraian & Natarajan, 2013b). To the extent that none of the families speculated about removing their children from mainstream settings despite the onerous nature and complexity of the demands placed on them in this process meant they had already stretched themselves in previously unimagined ways. This capacity for receptivity (Minh-ha, 2011) that marked families’ (particularly mothers’) oppositional engagement in this study reflected the continual process of remaining flexible where ‘nothing is thrust out, the good, the bad and the ugly, nothing rejected, nothing abandoned’ (Anzaldúa, 1987, p. 101). Such capability necessitated by their continual negotiations with oppressive structures to achieve more equitable opportunities for their children emerged from the freedom to abandon pregiven limits on the scope of their activity. Receptivity of this kind renders the postponement of idealized visions (e.g. the suitability of more empowering peer relationships over ‘helpful’ ones) as a form of ‘waiting’ (Minh-ha, 2011) that does not suggest a passive collusion with repressive systems but which is, instead, dynamic and energized. For teachers and teacher educators in India, this may mean that attempts to disrupt the marginalized status of dis/ability in schools may not assume one recognizable path of resistance to ability-based institutional practices. For instance, mainstreaming or separate specialized services need not automatically mean complicity with deficit-based ideology. Instead, as an instance of ‘waiting’, they may well serve as significant a step as inclusion when they secure opportunities for empowerment for different constituencies including children with disabilities both within and outside marginalized ethnic communities, their mothers and caregivers, as well as educators. An exclusive focus on disability rights/socially just pedagogy may contribute little to the advancement of inclusive practices when unaccompanied by an awareness of the multiple and simultaneous ‘oppressions’ experienced by all groups, including teacher candidates themselves. Recognition of this multiplicity of embodied experiences within the educational context means that traces of special education discourses within forms of practice need not originate only in deficit orientations. Instead, if both general and special educators are prepared to work within a space of ambiguity evoked by a differential consciousness, their locations within either professional category may become less relevant to the future of inclusive schooling. Conditions within countries like India pose challenges whose complexities can be only partially understood within a theoretical framework that is premised on interrogating norms of ability. Indeed, it is no wonder that some researchers have raised the idea that problem-solving in community contexts may be a much more desirable form of teacher education for inclusive education than formal preparation within higher education institutions (Miles, 2009). Still, across global contexts, when schooling systems transition from deficit-dominated approaches to inclusive models, the process of transformation on the ground is uncertain, unpredictable and complicated. Like the work of actors in India, it requires a methodological facility on the part of educators to work across differences that entail ambiguity and uncertainty (English, 2005).

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General and special educators all over the world are situated in the mid of competing discourses of ability/disability that they must then negotiate carefully to facilitate inclusive opportunities for their students with disabilities. Special educators have to engage in coalitional work with their general education colleagues, straddling discourses of ability with commitments to equity. Advocating for inclusive practices within schooling communities, therefore, implicates not only resistance to oppressive discourses of difference but a simultaneous engagement with them and with other problematic discourses on schooling and learning. A Third World feminist lens suggests that the preparation for inclusive education requires supporting teachers’ movement through, within and between different ideological systems to generate many, unpredictable and creative forms of resistance. Such theoretically grounded practice can permit the elasticity required for inclusive education efforts across world contexts to be recognized as valuable and as making a legitimate contribution to the advancement of the field.

Summary of key points ●

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This chapter introduced concepts from US Third World feminism, such as differential consciousness, as a methodology for oppositional engagement. Such a consciousness is differential in that it calls for movement between, through and within ideological positions. An oppositional consciousness calls for a politics of engagement. It recognizes that activist practitioners are embedded within a collectivity of interests and needs that requires a coalitional approach when seeking socially just goals. A US Third World feminist lens evokes a form of ‘world traveling’ which requires an openness to receive the experiences of actors such that they are not finalized in formalistic categories leaving the worlds of the speaker and the subject separate and disconnected. The chapter deploys some US Third World feminist concepts to identify the kind of stances that could inform teacher preparation for inclusive education in India and, by extension, in other sociocultural contexts.

Suggested questions for discussion 1. Consider an initiative that you would like to propose which could promote greater inclusion of students with disabilities in your school. How can a US Third World feminist lens help you determine the aims and scope of your initiative? 2. Imagine that your school decided to explore the experiences of families of students with disabilities in your school. How will a US Third World feminist lens inform the ways in which you make sense of their experiences? 3. How can a US Third World feminist lens be used to understand the diverse experiences of teacher candidates within a programme of teacher preparation for inclusive education? What meanings can it disclose about the ways in which candidates take up commitments to social justice?

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Siebers, T. (2008). Disability Theory. Ann Arbor: University of Michigan Press. Singal, N. (2006). Inclusive education in India: International concept, national interpretation. International Journal of Disability, Development and Education, 53, 351–369. Singal, N. & Jeffrey, R. (2011). Inclusive education in India: The struggle for quality in consonance with equity. In A. J. Artiles, E. B. Kozleski, & F. R. Waitoller (Eds.), Inclusive Education: Examining Equity on Five Continents (pp. 161–183). Cambridge, MA: Harvard Education Press. Slee, R. (2011). The Irregular School: Exclusion, Schooling, and Inclusive Education. New York: Routledge. Sriprakash, A. (2012). Pedagogies for Development: The Politics and Practice of Childcentered Education in India. London, UK: Springer. Steiner-Khamsi, G. (2006). The economics of policy borrowing and lending: A study of late adopters. Oxford Review of Education, 32(5), 665–678. Stillman, J. (2011). Teacher learning in an era of high-stakes accountability: Productive tension and critical professional practice. Teachers College Record, 113(1), 133–180. UNICEF (2014). Global Initiative on Out-of-School Children: South Asia Regional Study. Kathmandu, Nepal: UNICEF. Urwick, J. & Elliott, J. (2010). International orthodoxy versus national realities: Inclusive schooling and the education of children with disabilities in Lesotho. Comparative Education, 46(2), 137–150. Waitoller, F. R. & Kozleski, E. B. (2013). Working in boundary practices: Identity development and learning in partnerships for inclusive education. Teaching and Teacher Education, 31, 35–45. Ware, L. (2010). Disability studies in education. In S. Tozer, B. P. Gallegos, A. Henry, M. B. Greiner, & P. G. Price (Eds.), Handbook of Research in the Social Foundations of Education (pp. 244–260). New York, NY: Routledge. Winzer, M. & Mazurek, K. (2012). Analyzing inclusive schooling for students with disabilities in international contexts: Outline of a model. Journal of International Special Needs Education, 15(1), 12–23. World Bank (2009). People with Disabilities in India: From Commitments to Outcomes. Human Development Unit. South Asia Region: World Bank. World Health Organization and World Bank (2011). World Report on Disability. Geneva, Switzerland: WHO.

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Participation of Students with Disabilities in South African Higher Education: Contesting the Uncontested Colleen Howell (University College London)

Introduction In December 2014, the Minister of Higher Education and Training in South Africa announced the appointment of a Ministerial Committee tasked with the responsibility of developing ‘a Strategic Policy Framework for Disability in the Post-School Education and Training System’.1 This Ministerial initiative takes forward a commitment made in the government’s latest White Paper for Post School Education and Training (2013) to improve ‘access to and success in post-school education and training (including in private institutions) for people with disabilities’ (Department of Higher Education and Training, 2013). For South African universities, this policy imperative is not new and reinforces similar intentions outlined in the first post-apartheid government policy on higher education (Department of Education, 1997) and the associated National Plan for Higher Education (Department of Education, 2001). This chapter moves from the premise that while these policy goals and associated government initiatives are important, dominant practices and strategies at the institutional level continue, sometimes unintentionally, to undermine the equitable participation of students with disabilities in South African higher education. Despite this, they are seldom called into question. There is insufficient attention on recognizing the importance of organizational practices and their role in constructing and reproducing inequalities especially on the basis of difference (Armstrong, Armstrong, & Barton, 2000; Liasidou, 2014). While attention has been given by the government to investigating and problematizing the reproduction of racism and gender discrimination within the public higher education system, the inclusion of disability into such endeavours has been extremely limited (Department of Education, 2008). This chapter argues that these organizational practices emerge out of the dominant ways in which disability is understood in our society and given meaning within higher education institutions. These dominant ways of understanding disability, what Oliver (1990, p. 44) originally called the ‘hegemony of disability’ and which remain central

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to existing ‘common sense thinking’ about disability (Oliver & Barnes, 2012, p. 13), give rise, often in complex and contradictory ways, to practices and strategies within South African universities that fail to effectively overcome barriers to the creation of equity for students with disabilities. In many cases these practices and strategies may unintentionally reinforce the inequalities they seek to address by strengthening the very understandings of disability that are at the heart of the inequalities students with disabilities experience. Most importantly, these practices and strategies create a particular kind of disabling environment for students with disabilities, whereas Bozalek and Boughey (2012) argue, drawing on Nancy Fraser’s notions of ‘misframing’ in relation to social justice concerns, boundaries are established in the South African higher education system that exclude some groups and include others. Through this exclusion the equity concerns that are articulated in the policy framework are undermined and fall into the realm of ‘political symbolism’ (Jansen, 2002) – where the imperatives in the policy are politically symbolic, as they articulate the government’s commitment to important post-apartheid transformation concerns, but are unable to leverage the kind of institutional change that is necessary for the creation of equity for students with disabilities. Understanding how the creation of equity for students with disabilities is undermined through particular organizational practices and strategies has value for broader concerns around the transformation of South African higher education. Such understandings hold particular meaning for the growing assertion, articulated strongly through the recent student protest movements of #Rhodesmustfall and #Feesmustfall,2 that central to transforming higher education in South Africa is ‘the necessity to examine the underlying assumptions and practices that underpin the academic and intellectual projects’ of the country’s universities (Department of Education, 2008, p. 11). Moreover, these equity concerns for students with disabilities draw attention to what is happening within institutions and the importance of institutional practices and culture for the achievement of systemic change. They call into question the extent to which universities in South Africa are committed to building their capacity to respond to difference within the institution, including the differences students bring to the teaching and learning process, and ensure that all students have fair chances to succeed in their studies. This imperative brings into sharp focus the notion of inclusivity and its importance to a post-apartheid higher education system (Howell, 2015; Howell & Lazarus, 2003; Soudien, 2010), suggesting that central to the building of an equitable and just higher education system in South Africa must be the ‘valuing of differences in a new set of social relations’ (Slee, 1996, p. 27).

Conceptualizing and contextualizing access to higher education for students with disabilities in South Africa The policy goals noted above that speak to equalizing opportunities for students with disabilities in higher education in South Africa have always been recognized as part of a broader process of post-apartheid higher education transformation. They are

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both aimed at dismantling the unequal, racially divided and deeply inefficient higher education system of South Africa’s apartheid and colonial past, and building in its place an equitable and just higher education system, which is able to meaningfully contribute to South Africa’s development within a globalized, knowledge-driven world (Department of Education, 1997, 2001; Department of Higher Education and Training, 2013). These policy goals have also been intended to give meaning within the higher education context to provisions in South Africa’s Constitution that protect the rights of people with disabilities from unfair discrimination and recognize them as having been historically disadvantaged and thus the focus of measures aimed at redressing these inequities (Republic of South Africa, 1996). Despite the importance of this enabling policy framework, as the White Paper (2013) itself acknowledged, people with disabilities still face significant barriers in gaining access to higher education in South Africa (Council on Higher Education (CHE), 2005; Department of Higher Education and Training, 2013; FOTIM, 2012). In 2013, the White Paper, drawing from 2011 data from twenty-two of South Africa’s twenty-three public universities,3 stated that a total of 5,807 students with disabilities were enrolled across these universities at that time. Taken that the overall enrolment for the public higher education system in 2011 was 938,200, this figure indicates an approximate participation rate of 0.6 per cent for students with disabilities (CHE, 2012). While recognizing the concerns that have been raised regarding official determinations of disability prevalence in South Africa (Stats SA, 2005), if the latest figure of 4.9 per cent is used (Stats SA, 2015), there remains significant under-representation of students with disabilities in the country’s public higher education system. Such levels of under-representation also need to be understood in the context of the pervasive inequalities around race, class and gender that still frame South African society. Within the higher education system in particular, while racial skewing in participation rates is still strongly evident (CHE, 2015a),4 as Badat and Sayed (2014, p. 134) have argued, ‘if equity of opportunity and outcomes were previously strongly affected by race, they are now also conditioned by social class and geography’. For people with disabilities in South Africa, who remain among the poorest of the poor, with a greater number living in the country’s most impoverished rural areas (Stats SA, 2005), these inequalities remain central to their ability to access higher education. Moreover, it would be remiss not to emphasize that into this mix must be brought the continued impact of inequalities at the schooling level for people with disabilities on their ability to enter higher education. On the one hand, these inequalities are historical in nature, reflecting ‘the powerful influence of historic exclusion’ within the South African schooling system (D’Amant, 2012, p. 53). On the other hand, they are also reflective of the ongoing challenges involved in developing an inclusive education system in the country. Particularly important here are the challenges of building the capacity of teachers to become inclusive practitioners, often in the most adverse of circumstances (Stofile & Green, 2007) and overcoming the continued dominance of ‘deficit thinking’ on how teachers respond to the inclusion of children with disabilities in their classrooms (Ngcobo & Muthukrishna, 2011, p. 360). These challenges remain significant in continuing to restrict access to higher education for people with disabilities in the country.

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While this picture of existing levels of participation of students with disabilities is central to the building of an equitable and just higher education system in South Africa, what is especially important to the concerns of this chapter is that students with disabilities who do manage to gain access to higher education still face a myriad of challenges within institutions (FOTIM, 2012; Lourens & Swartz, 2016; Matshedisho, 2005, 2007; Mutanga, 2016). These challenges undermine the ability of students with disabilities to participate equitably in the academic activities of the academy, and in this way they are denied fair chances to succeed in their studies (CHE, 2005; Howell, 2006; Howell & Lazarus, 2003). This reality brings into focus a key principle that has been strongly articulated in the post-apartheid higher education policy framework, that is, the principle of equity. But what does this principle mean in the context of higher education? Government policy has consistently argued that ‘the principle of equity requires fair opportunities both to enter higher education programmes and to succeed in them’ (Department of Education, 1997, p. 11), or put another way, what is required is ‘equity of access’ and ‘equity of outcomes’ (Department of Education, 2001). In contributing to the early discussions on the building of a post-apartheid higher education system, Morrow (1993, p. 3) argued that the latter element of this principle was especially important if students were to obtain ‘epistemological access’ to higher education. This for him was about having access to the ‘essential good’ distributed by the university – that is, ‘access to the knowledge that is taught, shared and produced within the university’. He argued therefore that in the context of building an equitable and just higher education system in South Africa and effectively redressing the inequalities of the past, it is important to consistently distinguish between ‘formal access’ and ‘epistemological access’, where gaining formal access or getting into an institution does not automatically translate into gaining ‘epistemological access’. Understanding equity for students with disabilities in this way implies that what is required is a consideration of both those barriers that restrict them from gaining entry into higher education institutions (including programmes of their choice,) and those barriers that constrain them from gaining ‘epistemological access’ to higher education (Howell, 2006). Such an understanding directs attention to what is happening within institutions and those factors that may undermine their equitable participation in the academic activities of the university and thus from gaining ‘epistemological access’. Facilitating such participation requires a commitment to recognizing the primacy of the teaching and learning process or the education process in the creation of equity in higher education (Scott, 1995). Moreover, it requires the provision of flexible teaching and learning processes that are able to respond to the different ways in which students access the curriculum or engage in the learning process. The latter argument resonates strongly with notions of Universal Design5 and what this means within the sphere of education. Such an approach ‘means the development of course content, teaching materials and delivery methods to be accessible for and usable by students across the broadest diversity ranges … This approach acknowledges that students with disability or other needs may learn differently, but are not less academically capable’ (ADECT, 2016). Equally important is recognizing that the differences that students bring to the teaching and learning process or their specific learning requirements

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are, as Brown and Simpson (2004) have argued, ‘strongly context specific’ and may therefore change as the learning context changes. It will be argued in the next section that recognizing the importance of context in shaping the learning requirements of students with disabilities is especially important for South African higher education, where the learning needs of students are increasingly informed by a complex set of influences, ranging from severe educational disadvantage and lack of preparedness for higher education study to the demands of the ‘digital age’ (Howell, 2015). If the primacy of the teaching and learning or education process in the creation of equity for students with disabilities is recognized, then institutional approaches and strategies to support the equitable participation of students with disabilities must be strongly focused on what is happening within the classroom and ensuring that all students with disabilities are able to participate with confidence in the teaching and learning process and thus have full access to the curriculum. Central to this is influencing at the classroom level the attitudes, behaviour and pedagogical practices of the academic staff so that they are able to respond to the learning requirements of students with disabilities in their classes – what may be called ‘a strong pedagogical approach’ to supporting the participation of students with disabilities (Howell, 2006). Equally necessary to recognizing the primacy of the education process in the creation of equity is the provision of effective learning support for students, including those with disabilities. Such support, drawing on Simpson’s (1996) conceptualization of learning support in higher education, can be understood as systems and processes directed at facilitating effective participation in the learning process at the course and programme level. However, while all students will require ‘intentional and structured support to succeed in their studies’ (Tinto, 2013), the nature of the support may differ in relation to the specific learning requirements of students. As the CHE (2014, p. 20) has noted, ‘Given the diverse characteristics of students in South African HEIs [Higher Education Institutions], different types and levels of support are needed if students are to have a good chance of success’. Moreover, if, as Schreiber (2014, p. 76) suggests, student learning is a ‘seamless experience (involving) in- and out- of classroom development’ then students may require different kinds and levels of support both within and outside  the classroom. However, the overarching objective of such support should be to facilitate and enhance student learning and successful study. Its overarching objective should always be to facilitate ‘epistemological access’ for students. The extent to which existing organizational strategies and practices with regard to students with disabilities are effectively facilitating such access is now discussed.

Dominant trends in institutional responses to the participation of students with disabilities Fewer studies to date have explored systemic trends with regard to the participation of students with disabilities in South African universities. However, a central focus of those undertaken has been, not unexpectedly, how the participation of students with disabilities has been responded to and supported within the academic environment (CHE, 2005; FOTIM, 2012). These studies show that, as is the case in many other

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countries, where some form of organizational provision is in place to support the participation of students with disabilities in South African universities, it most often takes the form of what are commonly recognized as specialized ‘Disability Units’ (Department of Higher Education and Training, 2013; FOTIM, 2012). In most cases, with some exceptions (CHE, 2015b), these units are located in the division or area of responsibility within institutions generally referred to as Student Affairs, Student Services or Student Development (CHE, 2005; FOTIM, 2012), tending to offer support that ‘includes technical assistance for visually and hearing impaired students, physical support such as wheel-chair friendly access to buildings and academic support such as test and examination facilitation’ (CHE, 2015b, p. 128). It would be remiss not to note here that while the above reflects the dominant trend in how support for students with disabilities is organized and provided at universities, such provision is still strongly influenced by historical inequalities across the higher education system in South Africa (CHE, 2005; Department of Higher Education and Training, 2013), with some institutions not having any such structures or provision in place (CHE, 2015b; FOTIM, 2012). While these inequalities in provision are extremely important to understanding the South African context, I would argue that how students with disabilities are supported is equally important to the creation of equity. Thus, while the inequalities and inadequacies in existing provision are consistently and correctly called into question (Department of Higher Education and Training, 2013; Matshedisho, 2005, 2007), the nature and organization of existing support provision and how students with disabilities are therefore responded to within institutions seldom are. The consequence of this is that dominant modes of organizational practice, particularly evident within the better-resourced institutions and strongly resource dependent, become uncontested ‘good practice’ that all higher education institutions are then directed to strive towards (Department of Higher Education and Training, 2013). There are three important consequences to these dominant trends, which I would argue undermine the creation of equity in South African higher education. The first of these speaks to how they position students with disabilities within the university community and what this means for how their learning requirements are understood and responded to. Through the orientation, organization and delivery of those services presently in place to support students with disabilities in South African universities, they are largely responded to as a separate group of students within the university. Or, put another way, the nature of the support provided serves to reinforce a separation between students with disabilities and the rest of the student body. A recent report by the Council on Higher Education (CHE, 2015b) into teaching and learning across the public higher education system provides an example of this separation. In the report they discuss the provision of specific software for facilitating access to written or printed material for students with visual impairments. They note however that ‘in South Africa these devices are not often available in the library but rather kept in the Disability Unit, if there is one, at a university’. They conclude that if international good practice is considered then such devices should rather form an integral part of the libraries’ facilities (CHE, 2015b, p. 148). These services may provide individual students with disabilities with some important forms of support and, particularly within the South African context, have

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become important enabling mechanisms for their participation in the academic environment. However, the dominant way in which support provision is organized and delivered reflects a structural manifestation of a particular attitude and understanding of students with disabilities and their learning requirements (Howell, 2006). Such separation happens because the learning requirements of students with disabilities are positioned as different to those of the other ‘normal’ students on campus and any specific support they may require is most often orientated to compensating for the ‘problem’ that the student with a disability is perceived to have (Liasidou, 2014). Central to the attitudes and understanding that underpin these forms of provision are the assumptions they make about normality and, more specifically, that people with disabilities are not ‘normal’ (Abberley, 1993, 1997; Oliver, 1990; Oliver & Barnes, 2012; Shakespeare, 2007). They reflect and reinforce what Liasidou (2014, p. 125) calls the dominance of a ‘normalcy’ discourse where ‘the prevalence of the “able-bodied” order pervades social understandings in relation to the notion of disability’. These assumptions and associated positioning of people with disabilities as ‘not normal’ has been central to justifying the separation of education provision for people with disabilities throughout the world. While this is most evident at the schooling level where the structural separations in provision are more evident, the dominant ways in which students with disabilities are supported in South African higher education still provides a ‘segregating solution(s)’ to the ‘problem’ of disability and meeting the learning requirements of students with disabilities (Fulcher, 1989). Moreover, the pervasive ideology that constructs people with disabilities as ‘not normal’ and therefore not part of the ‘normal’ student body informs the nature of the provision in place, but is in turn reinforced and given legitimacy through the operation of these services. Leathwood and O’Connell (2003, p. 599) have argued that as soon as such separations are made between students in the higher education environment, those students who are separated from the mainstream become ‘homogenized, pathologized and marked as “Other”’. Moreover the ‘features’ of these students are compared and judged in relation to the ‘features’ of those students who are regarded as normal, and obviously against whom they ‘may be found wanting’ (Webb, 1997, p. 68). While a number of writers have discussed the ‘othering’ of people with disabilities in our society (Mik-Meyer, 2016; Shakespeare, 1994; Watermeyer, 2006), including the associated ‘labelling’ that it attracts (Agbenyega, 2003), what is particularly concerning in the context of South African higher education is the tendency towards homogenization that the existing, separating forms of provision create. Sayed (2003), problematizing notions of inclusion and exclusion, has pointed to what he argues is a danger in failing to recognize the heterogeneous nature of the ‘excluded’ and the particular importance of class, race, gender, ethnicity and poverty in creating inequities within the ‘excluded’. If this argument is related to the tendency for institutional practices to homogenize students with disabilities, then one of the effects of this is a failure to recognize the differences that exist among students with disabilities and the critical importance of these to shaping what students bring to the classroom and what they will require to access the curriculum. While not unique to South Africa, this homogenizing of students with disabilities disguises the complexity of the disability experience and its ‘embodiment’ within higher education (Lourens

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& Swartz, 2016), including the different ways in which students with disabilities construct themselves within the higher education environment (Mutanga, 2013, 2016) and their differing experiences of the support provision that is in place (Fuller, Bradley, & Healey, 2004). What is most dangerous in the South African context is that such homogenization fails to recognize the complexity of issues that impact student learning in higher education. The majority of students with disabilities in South Africa are deeply affected and challenged by the inadequacies of a highly unequal and dysfunctional schooling system as well as a public higher education system that is, twenty-two years into democracy, ‘failing its students’ (CHE, 2016, p. 178). The CHE argues that although many of the difficulties students experience when they come to university have their origin in the schooling system, ‘the higher education sector is responsible for addressing the needs of the students it serves. This will require rethinking many of our current curriculum structures including our teaching and assessment approaches and reflecting carefully on our institutional cultures.’ For the majority of students with disabilities, these issues are as important to determining what they will require from institutions, including the kinds of support, if they are to have fair chances to succeed in their studies. The nature of their impairment and how this may impact on their learning requirements is only one consideration in this ‘milieu’ of contributing factors (Chataika, 2010). Thus, as Ferrier (2006, p. 2; cited by Devos, 2012, p. 961) argues, such homogenization tends ‘to oversimplify the extent and nature of “disadvantage”’. For students with disabilities in South African higher education, such simplification fails to recognize, as Sayed (2003) suggests, the presence of important inequalities among students with disabilities and the impact that these are likely to have on their learning experience. In essence, it fails to recognize, and may in fact misdirect attention away from, critical factors that are important to ensuring ‘epistemological access’ for all students with disabilities. The second important consequence to these dominant trends in organizational practice is that they tend to turn attention away from or fail to emphasize what is happening in the classroom as the primary locus of change for ensuring ‘epistemological access’ for students with disabilities. It has already been explained that the dominant institutional location of existing disability units or support structures are within the Student Affairs, Student Services or Student Development divisions (CHE, 2005; FOTIM, 2012). This means that, despite a few exceptions where such support is located in the nexus between the ‘teaching and learning division’ on campuses and the ‘student services division’ (CHE, 2015b), teaching and learning support for students with disabilities is positioned within the organization outside the existing ‘mainstream’ teaching and learning support systems, usually driven through a division for teaching and learning. This dominant positioning means that support for students with disabilities is generally seen to fall within what the CHE (2015b) refers to as ‘nonacademic support and development’ rather than ‘academic support and development’. While the CHE cautions that a ‘sharp divide’ cannot be made between these two, it is the latter rather than the former that is orientated to ‘helping students successfully execute the tasks required to succeed in their academic programme’, including that attainment of academic literacies (CHE, 2015b, p. 25).

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The positioning and the associated orientation of the disability support structures means therefore that they do not generally enjoy a formal relationship of influence with regard to academic staff and their practices and are not located within the institution where they are recognized as having a legitimate right to do this (Howell, 2006). This undermines their ability to facilitate change within the classroom, including teaching practices (Liasidou, 2014; Riddel, 1998) and modes of assessment which, as Hanafin, Shevlin, Kenny, and McNeela (2007) note, have profound implications for students with disabilities. What is evident rather is that staff in the disability support structures, in their efforts to support students with disabilities, are forced to play an ‘individual mediation role’, where they mediate on behalf of individual students with the relevant academic staff (Howell, 2006). As Riddel (1998, p. 217) so aptly captured it, they become ‘responsible for chivvying staff into making provision for disabled students’ with a range of consequences for the students, including an overall ‘adhocness’ in what they can or cannot expect from their lecturers and within the teaching and learning process (Lourens & Swartz, 2016). The consequence of these trends in the South African context is that considerations around meeting the learning requirements of students with disabilities and what may be required at a pedagogical level for this to happen tend to remain outside important systemic processes aimed at improving teaching and learning. While system-wide initiatives have drawn necessary attention to the continued dominance of traditional educational approaches in South African universities, despite the very substantial changes that have taken places in the students entering the system (Scott, Yeld, & Hendry, 2007), disability remains largely absent or marginalized in these initiatives. Where disability is referred to or addressed, it is generally positioned within the parameters of student development and support rather than as an important consideration in improving and professionalizing teaching practice (CHE, 2015b). In essence, there is a failure on the part of universities and the system as a whole to recognize the primacy of the education process in the creation of equity for students with disabilities and to translate such recognition into meaningful organizational practice. The third consequence to these dominant organizational trends that is especially important in the South African context is how they influence the positioning of disability within broader understandings of institutional transformation in a postapartheid South Africa. Put simply, as FOTIM (2012, p. 11) has argued, ‘Disability issues are largely managed as separate from other diversity and transformation imperatives.’ There are two important issues to consider here. First, the positioning of support provision for students with disabilities outside the mainstream teaching and learning support systems is reflective of, and may in turn reinforce, the perception that support for students with disabilities cannot be adequately provided for through these mainstream systems within institution. This then means that the nature and functioning of these mainstream services are not called into question, and there is limited pressure on them to develop the capacity to respond to the full range of diverse learning requirements among the student population. Similarly, if the ‘problem’ of disability is best dealt with through a separate structure, often argued to be in the best interests of the students concerned (Howell, 2006), then very little needs to be done across the rest of the institution. Put simply, the institution as a whole does not really

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need to change in any kind of meaningful way. It is not surprising then that what is evident across the system is an overall lack of institutional responsibility with regard to addressing disability issues in the university (CHE, 2005; FOTIM, 2012). This lack of overall institutional responsibility with regard to disability and the reproduction of a culture of limited change at the institutional level are reinforced by the strong orientation, already described, towards the individual student rather than the institution. A number of writers have drawn attention to this tendency within higher education to individualize and pathologize support to students with disabilities (Beauchamp-Pryor, 2004, 2013; Liasidou, 2014; Riddel, 1998) and the extent to which such tendencies are strongly ‘compensatory’ in nature (compensating for what the student is perceived to not be able to do in the ‘normal’ way). However, most importantly, the dominance of a strong individual approach once again turns attention away from the institution and the imperative for it to change. Rather, what is seen to be required is the provision of services and processes that will ‘help’ students with disabilities assimilate into an unchanged environment – an environment that is still constituted by the very social relations that have given rise to and perpetuated the inequities they have and continue to experience (Sayed, 2003). These arguments resonate strongly with Fraser’s (1995, 2008) assertions about remedying injustice and the importance of distinguishing between what she calls ‘affirmation and transformation’. In making an argument for the importance of the latter, Fraser (1995) refers to the ‘underlying generative framework’ which she argues is responsible for or contributes to and shapes the inequitable outcomes evident in our society. Of particular concern here is that the dominant trends evident within South African institutions towards the participation of students with disabilities fail to effectively grapple with the underlying generative framework that reproduces the inequalities that these students continue to experience in higher education. In fact, as already emphasized, they may rather reinforce these inequalities and in this way undermine the ability for students with disabilities to gain ‘epistemological access’ to higher education and its benefits.

Conclusion By exploring some of the dominant trends in how universities in South Africa respond to and support the participation of students with disabilities, this chapter has highlighted a range of organizational practices and strategies that undermine equitable access to higher education for students with disabilities. These practices and strategies, while important to assisting individual students with disabilities, are ultimately segregating in their impact within the institution and reinforce, albeit unintentionally, historic and still dominant perceptions about students with disabilities and their learning requirements. Central to this is the perception that the kinds of support that they may require cannot be met through the mainstream teaching and learning support systems in place and that what is required is ultimately to assist students with disabilities to assimilate into an unchanged environment. It has been suggested further that there has also been a failure on the part of both government and universities to

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recognize in meaningful ways the importance of the teaching and learning process and the practices of academic staff towards enabling or restricting the ability of students with disabilities to access the curriculum and to thus have fair chances to succeed in their studies. It has also been argued that the consequences of these fault lines and lacuna within higher education institutions are particularly serious in the South African context, and arguably within other countries in the Global South, where the experience of disability is informed by a range of complex social, political and economic factors which in turn shape and influence the learning requirements of students with disabilities in these contexts. This chapter has drawn particular attention to how the strategies and practices of South African universities serve to homogenize students with disabilities and, in this way, mask the very real inequalities that are at play among them and how important these are to shaping their learning requirements, as they are to all students in South Africa. What is equally concerning is that these practices and strategies also contribute to the marginalization of disability within broader processes of systemic change in South African higher education – processes of change that are essential to eradicating the inequalities of the past. What is required then is the recognition at the institutional level that, like many other transformation challenges in South African higher education, disability and creating equitable opportunities for students with disabilities to enter and succeed in higher education is a senior leadership concern that needs to be integrated into all elements of the institution’s strategic thinking and planning. Moreover, there is a particular need for thinking that is ‘counter intuitive’ in nature – that is, thinking that goes beyond the probable to re-imagine what may be possible under the most difficult of conditions (Ndebele, 2007). For higher education institutions in South Africa, this means moving beyond the comfort of ‘segregating solutions’ to exploring practices that seek, through innovative and nuanced thinking, to create the conditions for a truly just and equitable higher education system that values and responds to the needs of all its students.

Summary of key points ●

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The creation of equity for students with disabilities in South African higher education involves being able to gain entry into a university without discrimination and being able to participate equitably within the process of teaching and learning in the classroom. While there is a strong enabling policy framework with a number of goals that speak to the creation of equity for students with disabilities in higher education in South Africa, dominant practices and strategies at the institutional level continue, sometimes unintentionally, to undermine their equitable participation in the system and their ability to successfully complete their studies. The chapter argues that insufficient attention is paid to addressing these organizational practices, which are seldom called into question. The conclusion is reached that essential to the creation of equity for students with disabilities in South African higher education is building the capacity of universities

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to respond effectively, particularly at the teaching and learning level, to the different learning requirements of students– a critical concern that has meaning beyond disability and which remains fundamental to building an equitable and just postapartheid higher education system.

Suggested questions for discussion 1. What strategies can institutions put in place to ensure that the learning requirements of students with disabilities become part of mainstream discussions and initiatives towards improving teaching and learning? 2. If support for students with disabilities is provided through the mainstream teaching and learning support systems in an institution, is there a danger that their needs may be marginalized? 3. If the learning requirements of students are strongly context specific, what are the important contextual factors that may influence the learning requirements of students with disabilities in your higher education system at the present time?

References Abberley, P. (1993). Disabled people and ‘normality’. In J. Swain, V. Finkelstein, S. French, & M. Oliver (Eds.), Disabling Barriers - Enabling Environments (pp. 107–115). London: Sage. Abberley, P. (1997). The concept of oppression and the development of a social theory of disability. In L. Barton & M. Oliver (Eds.), Disability Studies: Past Present and Future (pp. 160–178). Leeds: The Disability Press. Agbenyega, J. (2003). The power of labelling discourse in the construction of disability in Ghana. Paper presented at Australian Association for Research in Education (AARE) Conference. Available online: http://www.aare.edu.au (accessed 6 April 2016). Armstrong, D., Armstrong, F., & Barton, L. (2000). Introduction: What is this book about. In D. Armstrong, F. Armstrong, & L. Barton (Eds.), Inclusive Education: Policy, Contexts and Comparative Perspectives (pp. 1–12). London: David Fulton. Australian Disability Clearinghouse on Education and Training (ADECT) (2016). Universal design. Available online: http://www.adcet.edu.au/disability-practitioner/ course-design-and-implementation/universal-design/ (accessed 5 April 2016). Badat, S. & Sayed, Y. (2014). Post-1994 South African education: The challenge of social justice. The ANNALS of the American Academy of Political and Social Science, 652, 127–148. Beauchamp-Pryor, K. (2004). Power, policy and provision: Disabling barriers in higher education in Wales. In C. Barnes & G. Mercer (Eds.), Disability Policy and Practice: Applying the Social Model of Disability (pp. 99–115). Leeds: The Disability Press. Beauchamp-Pryor, K. (2013). Disabled Students in Welsh Higher Education: A Framework for Equality and Inclusion. Rotterdam: Sense Publications. Bozalek, V. & Boughey, C. (2012). (Mis)framing higher education in South Africa. Social Policy & Administration, 46(6), 688–703.

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Brown, P. & Simpson, A. (2004). The social model of disability in higher education: Attention to tensions. In C. Barnes & G. Mercer (Eds.), Disability Policy and Practice: Applying the Social Model of Disability (pp. 65–80). Leeds: The Disability Press. Chataika, T. (2010). Inclusion of disabled students in higher education in Zimbabwe. In Cross-cultural Perspectives on Policy and Practice: Decolonising Community Contexts (pp. 116–131). New York: Routledge. Council on Higher Education (2005). South African higher education responses to students with disabilities: Equity of access and opportunity? In Higher Education Monitor, no. 3. Pretoria: CHE. Council on Higher Education (2012). 2011 Higher Education Data: Overview. Available online: http://www.che.ac.za/focus_areas/higher_education_data/2011/overview (accessed 6 April 2016). Council on Higher Education (2014). Framework for Institutional Quality Enhancement in the Second Period of Quality Assurance. Pretoria: CHE. Council on Higher Education (2015a). 2013 Higher Education Data: Participation. Available online: http://www.che.ac.za/focus_areas/higher_education_data/2013/ participation#race (accessed 5 April 2016). Council on Higher Education (2015b). Content Analysis of the Baseline Institutional Submissions for Phase 1 of the Quality Enhancement Project. Pretoria: CHE. Council on Higher Education (2016). South African Higher Education Reviewed: Twenty Years of Democracy. Pretoria: CHE. D’Amant, A. (2012). Within and between the old and the new: Teachers becoming inclusive practitioners. Perspectives in Education, 30(1), 53–60. Department of Education (1997). Education White Paper 3: A Programme for the Transformation of Higher Education. Pretoria: Government Printer RSA. Department of Education (2001). National Plan for Higher Education. Pretoria: Government Printer RSA. Department of Education (2008). Report of the Ministerial Committee on Transformation and Social Cohesion and the Elimination of Discrimination in Public Higher Education Institutions. Pretoria: Government Printer RSA. Department of Higher Education and Training (2013). White Paper for Post-school Education and Training: Building an Expanded, Effective and Integrated Post-school System. Pretoria: Government Printer RSA. Devos, A. (2012). Rethinking the subject of higher education: Subjectivity, normativity and desire in student equity research. International Journal of Inclusive Education, 16(9), 959–967. Ferrier, F. (2006). A Review of Higher Education Equity Research in Australia 2000–2005. Melbourne: ACER Centre for the Economics of Education and Training, Monash University. Working Paper 64. FOTIM (2012). Disability in Higher Education. Johannesburg: FOTIM. Fraser, N. (1995). From redistribution to recognition? Dilemmas of justice in a ‘postsocialist’ age. New Left Review, 212, 68–93. Fraser, N. (2008). Reframing justice in a globalizing world. In K. Olson (Ed.), Adding Insult to Injury: Nancy Fraser Debates Her Critics (pp. 273–291). London: Verso. Fulcher, G. (1989). Disabling Policies? A Comparative Approach to Education Policy and Disability. Lewes: Falmer Press. Fuller, M., Bradley, A., & Healey, M. (2004). Incorporating disabled students within an inclusive higher education environment. Disability & Society, 19(5), 455–468. Hanafin, J., Shevlin, M., Kenny, M., & McNeela, E. (2007). Including young people with disabilities: Assessment challenges in higher education. Higher Education, 54, 435–448.

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Howell, C. (2006). Equity, Difference and the Nature of the Academic Environment: An investigation into the responses of South African universities to the admission and participation of disabled students. Unpublished PhD thesis, University of Cape Town. Howell, C. (2015). Guidelines for the creation of equitable opportunities for people with disabilities in South African higher education. Report prepared for Cape Higher Education Consortium (CHEC). Unpublished report. Howell, C. & Lazarus, S. (2003). Access and participation for students with disabilities in South African higher education. Perspectives in Education, 21(3), 59–74. Jansen, J. (2002). Political symbolism as policy craft: Explaining non-reform in South African education after apartheid. Journal of Education Policy, 17(2), 199–215. Leathwood, C. & O’Connell, P. (2003). It’s a struggle: The construction of the ‘new student’ in higher education. Journal of Education Policy, 18(6), 597–615. Liasidou, A. (2014). Critical disability studies and socially just change in higher education. British Journal of Special Education, 41(2), 120–135. Lourens, H. & Swartz, L. (2016). Experiences of visually impaired students in higher education: Bodily perspectives on inclusive education. Disability & Society, 31(2), 240–251. Matshedisho, R. (2005). Access to higher education for students with disabilities in South Africa: A tensive intersection of benevolence, rights, and the impasse of the social model of disability. Unpublished PhD thesis. University of Cape Town. Matshedisho, R. (2007). The challenge of real rights for disabled students in South Africa. South African Journal of Higher Education, 21(4), 706–716. Mik-Meyer, N. (2016). Othering, ableism and disability: A discursive analysis of coworkers’ construction of colleagues with visible impairments. Human Relations, 69(6), 1341–1363. Morrow, W. (1993). Epistemological access in the university. AD Issues, 1(1), 3–5. Mutanga, O. (2013). ‘I’m a university student not a disabled student’: Identity and social justice at South African higher education through the capabilities approach. Sustainable Learning Environments and Social Justice Colloquium, University of the Free State. Unpublished paper. Mutanga, O. (2016). Experiences of disabled students at two South African universities: A capabilities approach. Unpublished PhD thesis. University of the Free State, South Africa. Ndebele, N. (2007). Leadership Challenges. In N. Ndebele (Ed.), Fine Lines from the Box: Further Thoughts about Our Country. Roggebaai: Umuzi. Ngcobo, J. & Muthukrishna, N. (2011). The geographies of inclusion of students with disabilities in an ordinary school. The South African Journal of Education, 31(3), 357–368. Oliver, M. (1990). The Politics of Disablement. London: Macmillan. Oliver, M. & Barnes, C. (2012). The New Politics of Disablement. Basingstoke: Palgrave Macmillan. Republic of South Africa (1996). Constitution of the Republic of South Africa, Act No. 108 of 1996. Pretoria. Riddel, S. (1998). Chipping away at the mountain: Disabled student’s experience of higher education. International Studies in Sociology of Education, 8(2), 203–222. Sayed, Y. (2003). Educational exclusion and inclusion in higher education in South Africa: Creating a new national framework/consensus. In M. Tight (Ed.), Access & Exclusion (pp. 83–101). Oxford: Elsevier Science Ltd. Schreiber, B. (2014). The co-curriculum: Re-defining boundaries of academic spaces. Journal of Student Affairs in Africa, 2(1), 76–79.

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Scott, I. (1995). The role of academic development programmes in the reconstruction and development of higher education. Position paper produced for the IDT-sponsored investigation into future funding mechanisms for academic development programmes. Unpublished paper. Scott, I., Yeld, N., & Hendry, J. (2007). A Case for Improving Teaching and Learning in South African Higher Education: Research report prepared for the Council on Higher Education. Pretoria: CHE. Shakespeare, T. (1994). Cultural representations of disabled people: Dustbins for disavowal? Disability & Society, 9(3), 283–299. Shakespeare, T. (2007). Disability, normality, and difference. In Psychological Challenges in Obstetrics and Gynecology (pp. 51–59). London: Springer. Simpson, R. (1996). Learning development in HE: Deficit or difference? In S. Wolfendale & J. Corbett (Eds.), Opening Doors: Learning Support in Higher Education (pp. 17–30). London: Cassell. Slee, R. (1996). Inclusive schooling in Australia? Not Yet! Cambridge Journal of Education, 26(1), 19–32. Soudien, C. (2010). Transformation in higher education: A briefing paper. Development Bank of South Africa. Unpublished paper. Statistics South Africa (2005). Census 2001: Prevalence of Disability in South Africa. Pretoria: Stats SA. Statistics South Africa (2015). General Household Survey 2014. Pretoria: Stats SA. Stofile, S. Y. & Green, L. (2007). ‘Responding to the challenges of inclusive education in Southern Africa’. In P. Engelbrecht & L. Green (Eds), Responding to the challenges of inclusive Education in Southern Africa. Cape Town: Van Schaiks. Tinto, V. (2013). Lesson learned: Student success does not arise by chance. Presentation by Prof. Vincent Tinto at the Council on Higher Education (CHE) regional symposia on student success, 19–23 August 2013 Durban, Pretoria and Stellenbosch. Available online: http://www.che.ac.za/media_and_publications/che-events-presentations/ lesson-learned-student-success-does-not-arise-chance (accessed 6 April 2016). Watermeyer, B. (2006). Disability and psychoanalysis. In B. Watermeyer, L. Swartz, T. Lorenzo, M. Schneider, & M. Priestley (Eds.), Disability and Social Change: A South African Agenda (pp. 31–43). Cape Town: HSRC Press. Webb, S. (1997). Alternative students? Conceptualizations of difference. In J. Williams (Ed.), Negotiating Access to Higher Education: The Discourse of Selectivity and Equity (pp. 65–86). Buckingham: SRHE and Open University Press.

Notes 1 2

At the time of writing, a draft policy framework from the Committee had just been published for public comment. In 2015 students in public universities in South Africa embarked upon two important ‘moments’ of protest action that challenged fundamental issues about the nature and accessibility of higher education in the country. These became known as #Rhodesmustfall, which focused on the removal of a large statue of Cecil John Rhodes at the University of Cape Town and its symbolism of a colonial legacy which still permeates the higher education system in the country, and #Feesmustfall, which drew stark attention to the inequalities in access to higher education and the unaffordability of higher education for the majority of young people in South Africa. The #Feesmustfall protest intensified in 2016.

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Education and Disability in the Global South Two new public universities have been established since 2011 bringing the total number now to 25. The participation rate is calculated as the total headcount enrolments as a percentage of the total population between the ages of 20–24 years (CHE, 2016). A definition of ‘Universal Design for Learning’ is contained in the US Higher Education Opportunity Act of 2008. Here it is defined as ‘a scientifically valid framework for guiding educational practice that (A) provides flexibility in the ways information is presented, in the ways students respond or demonstrate knowledge and skills, and in the ways students are engaged; and (B) reduces barriers in instruction, provides appropriate accommodations, supports and challenges, and maintains high achievement expectations of all students, including students with disabilities’.

Schooling and Teachers

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Reframing ‘Spaces’ for Educating Children with Autism: Perspectives from Urban India Shruti Taneja Johansson (University of Gothenburg)

In the last fifteen years, ‘context’ has received increasing attention in education and disability debates. This is most notable in the discourse around inclusive education. The adoption of the Salamanca Statement and the Framework of Action on Special Needs Education (UNESCO, 1994) led to inclusive education being incorporated into official documents and national policies of countries across the world. Subsequently, there has been academic interest in contextualizing inclusive education across settings to see how it is reflected and interpreted in policy and practice (Alur & Timmons, 2009; Artiles, Kozelski, & Waitoller, 2011a; Mitchell, 2005; Rose, 2010). Justifying this need for contextualization, Mitchell (2005, p. 1) states ‘the characterization, purpose and form of inclusive education reflect the relationships among the social, political, economic, cultural and historical contexts that are presented at any one time in a particular country and/or local authority’. Others have highlighted the globalized world we live in today and raised the dynamic interplay of global, national and local forces in shaping inclusive education in specific settings (Artiles & Dyson, 2005; Artiles, Kozleski, & Waitoller, 2011b). While these claims for contextualization of inclusive education have been raised irrespective of country, this chapter shows how in the case of the education of people with disabilities in the South, foregrounding the local context is even more important. This chapter provides further evidence of the significance of listening to the local context by drawing on a study about children with autism in urban India. It also aims to show how using the metaphor of space could be one way to elucidate and explicate the significance of context. Space lends itself conceptually to provide a dynamic and holistic understanding of how context impacts education of children with disabilities.

Significance of the local context The push for inclusive education globally has given little consideration to the fact that the origin and development of the concept of inclusive education are restricted to the

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historical and sociopolitical context of countries in the North and how these relate to the situation in the countries of the South (Armstrong, Armstrong, & Spandagou, 2010). In recent years, this has come under critique. A steadily increasing body of research from African and Asian countries questions how international definitions of inclusive education have become the benchmark against which education of children with disabilities in countries of the South is being developed and assessed. Le Fanu (2011, p. 3) argues that this drive for ‘global inclusionism’, rooted in Northern practice and assumptions, has overestimated the capacity of education systems in the South. Elucidating this by drawing on case studies of educational practice in sub-Saharan African countries and Papua New Guinea, he raises how preconditions of the local context, such as resource constraints, large class sizes and availability of support for teachers to develop the skills needed to implement the desired curriculum, have been unacknowledged. The consequence of the imposition of international norms, which give little deliberation to the local context, has been frequently shown to result in distorted policy that does not reflect the needs within a country. The negative impact of this ‘international orthodoxy’ on the developments in Lesotho is exemplified by Urwick and Elliott (2010, p. 137). Their analysis shows how the intention to establish an inclusive system failed to consider the existing realities of a resource-constraint Lesotho with inadequate physical infrastructure, limited trained staff and absence of necessary assistive devices, resulting in the needs of children with disabilities not being met. They question how a country can transition from no provision for children with disabilities to a fully inclusive one and highlight alternative school systems or specialized facilities as facilitating inclusion and a first step to actually providing minimal level of education. The shortcomings of a forced top-down implementation of inclusive education policy are also evident in Botswana. Mukhopadhyay (2015, p. 33), drawing on data from focus group interviews with teachers, observations in classrooms and documents, concludes that ‘inclusive education policy was imposed without examining the local context and adequate consultation of the local practitioners’. Alongside the concerns of human, economic and infrastructural resources in schools in the South, studies have drawn attention to the wider social, cultural and familial contexts within which education of children with disabilities takes place. Researchers have started questioning the uncritical propagation of the dichotomy of the individual and social model in understanding disability and developing services for disability education in the South. Maudslay (2014), discussing this in relation to Nepal, argues that within international-driven educational change programmes, there tends to be a generalization on how disability is perceived and how people with disabilities are treated in the country, without analysing the complexities of the situation. Similarly, Anthony (2011, p. 1083) exemplifies this in the case of Ghana, where spiritual beliefs and communal nature of Ghanian society significantly influence the local conceptualizations of disability, which is interpreted through a social-relational lens. She concludes that in designing educational programmes for students with disabilities, ‘it is critical to understand the cultural lens through which impairment is viewed and to avoid all too frequent development of international programmes … to act in opposition to these belief systems’.

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Valuable insights on how inclusive education needs to be locally contextualized are provided in Richard’s (2014, p. 308) ethnographic study on children with cognitive disabilities and their families in rural Himalayan region of Ladakh, India. While focus in current policies on inclusive education is on delivery of education services to the individual child, he shows in the context of Ladakh the family is crucial to the child’s well-being and inclusion. He argues for inclusive interventions to be aligned to this and to extend beyond the context of school. The decontextualized approach to inclusive education has also overlooked the actual opportunities and supports available for education of people with disabilities within a specific context (Singal & Muthukrishna, 2014). In development of guidelines and policy frameworks in Botswana, Mukhopadhyay (2015, p. 34) raises how no attention has been given to ‘indigenous knowledge and skills as potential strategies for classroom practice’. Similarly, Le Fanu (2011, p. 18) argues for ‘grounded inclusionisms’ which are based on ‘close observation of good practice in schools … as this practice represents the deft negotiation of diverse realities by local experts’. The importance of taking into account indigenous definition of inclusion for meaningful and sustainable change is emphasized by Pather (2011). She supports this by a case study on students with physical disabilities in black rural secondary school in South Africa and shows how inclusion of children with disabilities was already taking place but not in the form dictated by the North. She critiques the current approach in policies and plans which are constructing systems of support that are not contextually appropriate. While claims for context in general are gaining ground, it is within current debates in postcolonial disability theory that context has been raised as not only important but as most fundamental to the understanding of the phenomenon of disability in the South. Researchers like Grech (2009) and Meekosha (2011) argue that the South as a whole has to be contextualized differently from the North. They highlight the importance of acknowledging the diversities of social contexts by arguing how the experience of disability in the South is intimately tied to the structural, cultural, economic and political domination of the North over the South through imperialism, centuries of colonization and globalization (Ghai, 2002; Grech, 2009; Meekosha, 2011). Furthermore, Grech (2011, p. 90) states, ‘Engaging with the nuances of context is necessary, at the very least, because disabled people experience all or most of the aspects of economy, society and politics as other people do … and it is within this context that meaning of disability is negotiated and experiences are lived.’ There seems to be growing but varying emphasis on the importance of context in making visible different nuances of disability and education in the South. Evidence from the contextualized research from African and Asian countries provides a rich, nuanced and holistic account of the actual realities, dilemmas, strengths and concerns within a country/setting. The remaining chapter supports this claim by focusing on the country of India.

The study This chapter draws on findings from a doctoral thesis which aimed to develop contextual understanding of the schooling of children with disabilities in urban India. The study was

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based on the assumption that context influences peoples’ lived realities and experiences and local meanings. It explored stakeholders’ perceptions and practices towards educating children with autism in mainstream schools. Information gathered during preliminary fieldwork was complemented with insights from literature on autism and disability in India and resulted in the following questions being addressed: How are schools in urban India responding to the education of children with autism? How do teachers understand and respond to the needs of the child with autism in their class? What are the parents’ views and experiences with mainstream school for their child with autism? How is inclusive education conceptualized within these schools in the existing sociopolitical context? An ethnographic mode of enquiry (Taneja Johansson, 2015) which relied on qualitative tools was used to gather in-depth insights in the field. The multifaceted research involved interviews with 18 parents, 11 private practitioners1 and 35 school staff (principals, teachers and special educators) in 11 schools, and classroom observations in nine of these schools in the urban city of Kolkata. Schools that currently had a child with autism aged 6–14 on their rolls were included in the study. The age limits were chosen based on free and compulsory education being a fundamental right for children in this group. The identification process resulted only in private fee-paying schools2 with English as the medium of instruction and parents from the middle-income group, being part of the sample. However, there was a wide variability among schools on a range of dimensions: the year of setup, tuition fees, school composition, school population and class size. Furthermore, two of the schools had a specific and clear mandate towards inclusive education and referred to themselves as ‘inclusive’ schools.

Education of children with disabilities in India: A changing setting Education of children with disabilities is no longer restricted to the margins in India (Thomas, 2005). In the last twenty-five years, it has gradually become part of wider educational discourse. Three significant legislations passed in the 1990s put the education of children with disabilities on the map. The Rehabilitation Council of India Act (MSJE, 1992, 2000) stated that all children with special needs will be taught by a trained teacher. This was followed by the Person with Disabilities Act (MSJE, 1996),3 which entitled access to education in an appropriate environment for all children with disabilities up to eighteen years of age. Finally, even though the National Trust Act (MSJE, 1999) did not directly touch on education, it drew attention to services and support for a number of neglected disability groups, including autism. The 2000s saw a continued commitment to policymaking for education of children with disabilities, wherein the Indian government enacted three new policies – Action Plan for Inclusive Education of Children and Youth with Disabilities (MHRD, 2005), National Policy for Persons with Disabilities (MSJE, 2006), and Inclusive Education for Disabled at Secondary Stage (MHRD, 2009a). The last decade has also seen noteworthy developments in the universal education system in India with the initiation of the Sarva Shiksha Abhiyan (SSA) programme, the biggest educational movement in the country to provide elementary education for all

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(MHRD, 2012), and the Right to Education Act (MHRD, 2009c), which stipulates free and compulsory education for all children in the 6–14 age group (MHRD, 2009c). As both these mainstream policy initiatives include children with disabilities within the realm of ‘all’ children, the education of children with disabilities thereby entered the mainstream. The inclusion of people with disabilities into mainstream educational programmes has now even been extended to the secondary level. The existing Rashtriya Madhyamik Shiksha Abhiyan (MHRD, 2009b), a scheme to enhance access and improve quality of education at secondary stage, now even includes disability. This change took place in 2013–2014, where previous schemes/policies specifically for the education of young people with disabilities were subsumed under it. The dynamic nature of this field is further visible in the intensification of coverage of education of children with disabilities within the mass media. There are now frequent newspaper columns on the issue, magazines with cover stories on the topic, discussions on prime time television debates and talk shows, and an increasing number of movies centring on disability and schooling. Furthermore, the huge increase in the number of websites, blogs, forums and Facebook groups is also a reflection of this rapidly changing environment, where the education of children with disabilities has gained more visibility in public discourse. Keeping pace with these changes in policy and the larger society, there has also been increasing academic interest in this area. Conferences, books, articles and empirical studies on the topic are also more commonplace now than a decade ago.

A framework of ‘spaces’ to contextualize schooling of children with autism in India Space is a geographical concept that has gained popularity in the social sciences and humanities in the late twentieth century. While space is increasingly being discussed as an important dimension of social theorization, my intention of using space here is solely as a metaphor, that is, a representational strategy4 (for further discussion, see Crang & Thrift, 2000). Certain attributes of space make it a particularly useful concept to describe and explain the intricacies of schooling of children with disabilities such as autism in the dynamic context of India. Space is essentially a socially produced construct, arising as a consequence of social processes (Gulson & Symes, 2007). Space, with a focus on social processes, thus comes to have meaning through everyday activities and practices, which are dynamic rather than static. Space also acknowledges the ‘embeddedness of action in the world’ (Crang & Thrift, 2000, p. 3); that is, spaces are part of other spaces, which in turn influence (not determine) what happens within a particular space. Additionally, space is not simply the end product. Since it arises from social processes, it is always in process, which incorporates the aspect of time (Crang & Thrift, 2000). Thus, space is not a given with distinct physical boundaries but varies in terms of who inhabits these spaces and how these are constantly changing. This attribute of space provides the tools to be able to both discuss what is captured at one

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moment of time and at the same time account for the changes that are taking place in these disability spaces. Thus, the metaphor of space as a social process encapsulates the present, the historical duration and different geographical extents. Applying ‘space’ to the data from the study allowed me to capture the continuously evolving nature of schooling of children with autism in the fast-changing context of disability and education in India. The interaction of the wider developments in India on the changing lived experiences in education of children with autism enabled a dynamic ‘unbounded’ account of the explored phenomenon. The sample in this study is restricted to urban private schools, catering for the middle-class upwards, which is arguably a very selective sample in context of the existing diversity in India (Singal & Jeffery, 2011). Nonetheless, I argue that the findings from this study are not isolated but part of a certain time and setting. Space provides the tools to link the findings from this study to the wider Indian context. As the following discussion will show, the practices surrounding education of children with autism can only be understood in relation to other spaces inhabited by stakeholders, which are not necessarily related specifically to autism or disability. Four autism spaces emerged strongly during the analysis of the data – the medical space, the political space, the social space and the educational space – and these provide deeper and more nuanced insight into the phenomenon explored. These spaces are discussed below, by drawing on findings from the study, and supported by literature on the topic.

The medical space Like any disability in India (see e.g. Singal, 2009), autism is strongly connected to the knowledge of the ‘expert’, that is, the specialists who identify and diagnose the problem, and the limitations this entails and who then provide treatment, therapy and other interventions to compensate for it. This study assumed that this ‘medical gaze’ (Foucault, 1994) was in place and that the autism diagnosis was constructed based on a medical discourse by experts. Despite this similarity, there are significant differences in how the autism medical space takes shape in comparison to physical disabilities (motor, visual and hearing impairment), which have mainly been the focus of academic, policy and public discourse in India (e.g. Mehrotra, 2011; Singal, Jeffery, Jain, & Sood, 2011; Singh & Ghai, 2009). It is well acknowledged in reports and studies that information regarding autism in India is limited across all professional groups (Daley, 2004; Krishnamurthy, 2008; Malhotra & Vikas, 2005; RCI, 2007; Vaidya, 2008). For instance, Daley’s (2004) study on ninety-five children from four cities in India with a diagnosis of autism found that parents saw an average of four doctors, some as many as twelve, before they received the right diagnosis for their child. Similar accounts were also narrated by parents in this study, who visited a wide range of specialists till their child finally received a diagnosis of autism. While in the recent years there has been a noticeable increase in awareness among medical professionals (Daley & Barua, 2010), recent studies continue to show challenges faced by parents in determining their child’s diagnosis and accessing appropriate support and treatment (Divan, Vajaratkar, Desai, Strik-Lievers, & Patel, 2012).

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Understandably, the concerns in India unlike the North are not about children being overdiagnosed (CDC, 2010), but as the Rehabilitation Council of India report concludes, ‘despite increased awareness … many autistic children still do not receive a diagnosis’ (RCI, 2007, p. 13). This is also reflected in Grinker’s (2008, pp. 215–216) observation of the situation in India in his anthropological study on autism across cultures, where he writes that ‘rather than concluding that there is an epidemic, many Indians conclude autism is a more accurate and useful diagnosis than mental retardation and madness’. In many countries of the North, key participants in the medical space are teachers and special educators within schools. This involvement of schools in the process of diagnosis has been subject to considerable critique and highlighted as one of the main reasons behind the increasing number of children receiving various neuropsychiatric diagnoses, including autism (Ekström, 2012; Molloy & Vasil, 2002). This does not seem to be reflected by the parental experiences in this study. While three parents stated that a teacher had brought to their attention the difference between their child and the peers, only one suggested that the parents should consider consulting a specialist. Moreover, once parents did initiate the process to ascertain the cause of the problem, schools were never consulted during the diagnostic process. While under the government’s Education for All SSA programme, teachers are more actively involved in identifying children who might have a disability (Singal & Muthukrishna, 2015), in case of a hidden disability like autism, this is likely to be limited across urban and rural areas (RCI, 2007). This is supported by Singal’s (2014) finding of the wide discrepancies in elementary school enrolment in India based on the type of impairment. In her analysis of the District Information System of Education data over a three-year period spanning eight states, she revealed the consistently low representation of children with autism and cerebral palsy in comparison to other disabilities. It has been frequently shown that obtaining an autism diagnosis and treatment within the Indian context is clearly parent dependent and driven (Brezis et al., 2015; Desai, Divan, Wertz, & Patel, 2012; Grinker, 2008). This is also supported by what parents narrated in the study. This brings into question the dominant discourse in the medical space of the authoritarian expert and the passive parent. This has to be understood within the space of the autism movement in India which has been led and developed by parents from its inception. Discussing the lack of services available to parents in countries like India, Brezis et al. (2015) state that ‘parents who wish to provide services for their child often have no choice but to take on an active role in either aggressively seeking help or providing the interventions themselves’. The Internet has been central in transforming the autism medical space in India. Grinker (2008, pp. 217–218) describes how middle-class parents in India are well updated about what is happening in the field of autism internationally and are as likely to read autism information and research from America as that on an Indian website. He concludes: ‘There is emerging in India a disjunction between doctors, who often rely on outdated medical literature, and parents, who are increasingly well informed.’ The autism medical space in India is also being shaped by popular media. One such is a prime-time soap opera ‘Aap Ki Antara’ centring on a 5-year-old girl with autism

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and concluding with a three-minute testimonial from a family member of a person with autism. An analysis of the calls made to a telephone helpline at the end of the programme shows the impact on awareness of autism among the general public and particularly among families of children with disabilities (Singal, Daley, & Barua, 2010). Despite the fact that the diagnosis of autism has primarily been developed in the North, there has been little challenge to the notion of autism within India. In contrast, both the validity and the relevance of the label have been subject to extensive critique in many countries of the North (Eyal, 2010; Moloney, 2010; Nadesan, 2005). While there is no such discourse within India that questions the autism label or the wellestablished international diagnostic criteria in place for autism, some researchers have raised the contextual and cultural nature of how the autism diagnosis and treatment take place in India (Daley, 2004; Daley & Sigman, 2002; Grinker, 2008). While the medical space remains largely uncontested, what is interesting and comes out powerfully in the findings from the study is how other spaces, as in the political, social and educational, are changing in relation to not just autism but the broader field of disability.

The political space The findings from the study showed various ways in which the autism label was being used by stakeholders to achieve a certain purpose. For example, the majority of parents withheld information about the diagnosis of their child at the time of school admission. Parents clearly perceived that the autism label put their child in an unfavourable position to gain access to the school. By not disclosing the diagnosis, they tried to maximize the chance of entry for their child into the private school of their choice. A mother of a 9-year-old student in grade 4 narrated: It was a new school, so whoever applied for admission they just took them in. At that point, I did not say anything about the problem because they would have not taken him in. He was young and I hid the autism diagnosis.

Parents’ underlying motivation for this calculated approach finds support in Daley’s (2004) study, where parents described the autism label as being a hurdle to accessing educational opportunities for their child due to the widespread misconceptions of children with autism as ‘unmanageable’. Similar beliefs of autism being a severe condition were reflected among school principals in this study. Schools in general were found to be exploiting the autism label in order to not admit certain children in the school. While the two schools with an inclusive mandate highlighted the autism label of a child to show his or her unsuitability for their school setting, the other schools extended this beyond autism to a disability label in general to restrict entry. Interestingly, all schools aligned to the right discourse by justifying this decision by emphasizing their own inability to meet the needs of a child with autism, who would require certain special supports which these schools were unable to provide. A special educator in a school with inclusive mandate justified this: ‘In an inclusive school the child has to function in a classroom. It is not a special school and

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always giving one to one attention is not possible. A special school can give more input and help him.’ Not only was the disability label used by schools to deny entry to school for certain children but also as a reason to expel a child with disability. This was clearly articulated by one parent who had not disclosed the diagnosis to the school: ‘If they do not know about it, they cannot use it to throw him out.’ Drawing on the disability label, in particular autism, to not admit and exclude children from schools permeates media reports and has been shown in a previous study (Narayan, Chakravarti, David, & Kanniappan, 2005). The political use of the autism label was also visible in parents deliberate delivering of the information regarding their child’s diagnosis to the school. This was done at a particular stage in the child’s schooling with the intent to gain certain advantages, such as support, sensitivity and flexibility, which parents perceived were necessary for the child to stay and progress in school (for discussion see Johansson, 2016). This political use of the autism label is not surprising, given that the whole discourse around disability per se is getting more politically charged in India. Disability has now transitioned from the sole focus on medical aspects to the raising of other issues. This is pertinently highlighted by Jeffery and Singal (2008) who discuss how there is growing awareness in India regarding the reservations and incentive provisions available through various schemes for people with disabilities. This according to them has resulted in people seeing the advantages of having a certified and identified disability. Their research experiences from a small-scale study carried out in Madhya Pradesh resonate with those of Pande and Dalal (2004) from a village district in Uttar Pradesh. In their findings, people were keen on being identified as disabled by the study with the intention of obtaining benefits, financial or other. This politicization of disability within India is an interesting development. Disability has transitioned from being solely associated with stigma, which often resulted in families and individuals not disclosing the disability of a family member (Ghai, 2015), to actually wanting to identify a person with disability for obtaining certain incentive provisions. In many ways, this politicization of disability in India is no different from findings from other parts of the world, especially where the diagnosis is well established and linked to allocation of resources (Swain, Gillman, & Heyman, 2000) through legislation or as result of other situational factors. Furthermore, this political use of the label in this study was not only for obtaining certain resources but also for access to certain places like schools, for instance. An illustration of this is the response of a parent who was asked to withdraw their child from the school. The mother involved the disability commissioner5 by drawing on her child’s disability label to show that school could not ask her child to leave. However, this is an isolated example. Very few parents with children admitted in private schools would resort to such measures in fear of schools’ backlash. This is despite the fact that the law states that no school, private or public, can expel a child on the basis of their disability. However, as many private specialists in this study described, schools are aware of this and usually do not directly draw on the disability but find other means of asking the child to leave. There were interesting accounts from parents and specialists of how some private schools admitted children with autism on the condition that they

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would have to withdraw the child if he was unable to adjust. Some schools had even made parents sign binding documents to this effect. While parents with children in private schools cannot always use government policies to ascertain certain rights and resources be made available to their child because of a disability label, the situation is fast changing in government schools with recent policy developments, such as the SSA (MHRD, 2011). Some of the private specialists in this study did allude to this by stating that they had recently started encouraging parents of children with certain disabilities to admit their child to a government school instead of those within the private system. They claimed that within a government school, there is the possibility of demanding the provision for support from a special educator, among others, which is not guaranteed in a private school. With more resources being stipulated for children with disabilities under the SSA, it is likely to result in disability becoming more politicized. The discourse is likely to move towards a desirability of a disability label and negotiating and renegotiating of services, concessions and examination exemptions, rather than one of stigmatization. Thus, the political space highlighted by autism in this study was a reflection on how the political space around disability is also changing in India.

The social space One element of the social space highlighted in the findings is the impact of the label autism on the relationship between parents and schools. The study showed that as soon as parents revealed the diagnosis, their relationship with the school came under more scrutiny. The characteristics of this changed relationship are discussed in detail in Johansson (2016). It elucidates how parents felt obligated to the school for allowing their child with a diagnosis to continue, which resulted in them adopting a non-questioning approach towards the school and teachers. While parents carefully deliberated on what assistance or changes to request from the school to support their child’s presence and progress in the setting, they were extremely careful about how they approached it with the school so as not to destabilize the boundaries. In essence, parents’ relationship with the school was identified as fragile and was constantly being negotiated and renegotiated post disclosure of the diagnosis. This significantly changed parental relationship with the school as a consequence of the autism label becomes more recognizable when it is juxtaposed with parents whose children did not have any such disability label. This is best exemplified in the case of families where siblings were attending the same school as the child with autism. These parents’ descriptions of their interactions and experiences with schools for their child with autism often contrasted with the case of their ‘non-autistic child’, where these careful contemplations for interactions with the school were never a concern. Moreover, this also finds support in one case where the parents had not disclosed the diagnosis to the school and their interaction with the teachers took the shape of a parent concerned with her child’s participation in the classroom rather than that of a parent of a child with a medical label. Nonetheless, it is important to recognize that shared knowledge of the label has the potential to improve relations between the school and the parents. Lauchlan and

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Boyle (2007) discuss how diagnostic labels in special education provide legitimized explanations for the child’s problems in the classroom, which has both positive and negative outcomes. In the Indian setting, where it is common for parents to be blamed for their child’s odd behaviours and difficulties (Vaidya, 2008), the autism label could possibly replace teachers’ assumptions of parental shortcomings in upbringing and discipline, contributing to a more positive relationship. While this conclusion is hard to draw based on the findings from this study, this does seem plausible when seen in conjunction with other data from teachers’ interviews. While talking about the child with autism, teachers often mentioned other children in their classroom having behavioural difficulties. However, their explanations of the behavioural difficulties for these children were usually rooted in parental lack of involvement or family circumstances, which was never the case when it concerned the child with autism. Another element of the social space reflected in this study was if, and in what way, the knowledge of the diagnosis changed parents’ approach to schooling for their child. Findings showed how on a basic level parents responded to the schooling of their child with autism in a similar fashion as other middle-class families in India (see discussion in Johansson, 2016). This was also one of the reasons for many of the inconsistencies, dilemmas and tensions in parents’ accounts which reflected middle-class thinking but were in contradiction to what parents perceived their child needed and the hurdles they had or were facing. Despite parents having encountered difficulties with their child’s admission into a private school, they did not consider government schools that are obligated to admit every child. This tension is also visible in parents selecting schools with English as the medium of instruction, even though many of them saw English as hurdle for their child who was more comfortable in the Bengali language. Similarly, this is evident in them sending their child for private tuitions, although they did not see the child benefitting from it. These parents’ approach to schooling for their child with autism was directed by the middle-class societal space they inhabited, a space with certain inherent beliefs and rules. Nevertheless, while schooling strategies adopted by parents in this study might be similar to other middle-class parents, findings show how having a child with autism made parents more active and strategic in their approach to schooling for their child. Parents were found to be slowly pushing boundaries within the school and bringing about modifications for their child. Finally, a slowly transforming social space captured in this study shows how private schools that are not obliged to follow government policy were changing in their acknowledgement of responsibility towards children with disabilities in general. While the schools in this study had admitted the child with autism knowingly or unknowingly, they expressed a consciousness of responsibility towards these children, by which they provided varying levels of accommodation (see discussion in Taneja Johansson, 2014a). This change is not a result of a new inclusive policy in school or an act of altruism, the two reasons which have commonly been raised as the motive behind private schools admitting and supporting children with disabilities (Jha, 2010; Singal, 2008). On the contrary, these developments have to be understood in the wider space of how disability is entering into the general consciousness of society. Schools and principals in this study are part of a rapidly transforming society where changing perception towards education of children with disabilities is reflected in the media and in increased policy attention.

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Interestingly, findings from this study show how some private schools are now taking more responsibility, even though it is limited to children with autism who are already in their school, and the types of accommodations made are also questionable.

The educational space The educational space overlaps partially with the physical place of the classroom with the class teacher at the forefront. One of the questions addressed in this study centred on teachers’ perceptions of and practices with the child with autism, and I reflect here on how these were shaped by the knowledge of the child having the label of autism. For teachers, the term ‘autism’ meant no more than it being the name of the child’s special need. Consequently, the autism diagnosis did not influence their perception of the child and his or her educational needs. Dominating teachers’ accounts were the notion of the child being ‘different’. Drawing on their understanding of the ‘normal’ child, they raised personality and behaviour characteristics that varied from the other students in the classroom. However, significant to note is that these descriptions of the child did not seem to be associated neither with something negative nor with difficulties arising in the educational setting (see for discussion Johansson, 2014b). Paradoxically, there was an incongruity between teachers’ described understanding of the child and their explanation of his or her educational needs. Despite having emphasized the child’s ‘intelligence’, teachers’ concerns were largely limited to the child’s academic performance. Moreover, having raised the child’s need for friends and he or she being subject to frequent teasing and bullying, little emphasis was given by teachers to support the child to develop the necessary social and communication skills to negotiate this. Thus, teachers’ description of the child’s educational needs seemed to be motivated by what they saw as important for all students – academic assessment and exam performance, which have frequently been shown to be the focus of teaching in India (Nargund-Joshi, Rogers, & Akerson, 2011; Pachigar, Stansfield, & Goldbart, 2011). This consequently leads to neglect of the educational needs arising out of the social sphere. However, looking at the pedagogical impact of the special need label, findings show how in subtle ways it impacted teachers’ practices. Teachers were found to be making accommodations and providing support to further the child’s participation within the classroom. For instance, this was done by them adopting a flexible approach when it came to the norms of acceptable classroom behaviour and/or during assessments and examinations. Moreover, the impact of the label is also visible in teachers’ reflective decisions regarding what direct support to provide to the child, which behaviour to attend to and which to ignore, and where to seat the child among others. Generally, the findings illustrate how teachers’ pedagogy was determined by wider environmental and cultural factors, extending beyond the knowledge of the special need label. Here it is important to locate teachers’ responses in this educational space as embedded and part of other spaces. Firstly, teachers’ response to the child with autism took place in a space where he or she was responding to the needs of other children and within the limitations of the existing realities of his or her classroom, where he or she was a lone teacher with thirty-five children. Secondly, her response was embedded in the wider space of teaching in India, the norms surrounding it, and the adopted

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roles and responsibilities. Thirdly, it was shaped by the perceived limitations of the educational system in general with an emphasis on written work, assessments and examinations. Finally, teachers operated within the space of a particular setting where their practices were determined to a large extent by the frames set by the principals. Strong influence of leadership was not only limited to teachers’ classroom practices but also impacted admission of children into the school. Even though the educational space illuminated in this study was restricted to private schools, principals were found to be influenced by the permeation of inclusive education into the general discourse. The diverse meanings they assigned to inclusive education, inclusive schools and the includable child set the foundation for who was considered ‘includable’ and where (for discussion see Taneja Johansson, 2014a). While government schools by law are supposed to provide access to specialist support (MHRD, 2012), only a few of the private schools had access to one. Nonetheless, special educator’s limited role in the education of the child with autism was largely restricted to compensating for academic shortcomings during classwork, assessments and examinations. Moreover, permeating special educator accounts was the inadequacy of their educational training which provided them with limited skills to work and support children with special needs within the mainstream. This was also reflected in their restricted and in many cases questionable knowledge of autism. The educational space for children with autism was not restricted to the school but extended to the parents as well. In the study, the educational space was also exemplified by the constant decisions parents had to make regarding their child’s schooling. On the one hand, it was the choice of school for the child – mainstream, ‘inclusive’, special, government, private and/or which specific private school. On the other, it was also about how to support the child within the school, which parents did in various ways by carefully negotiating conditions within the school, for instance, by finding outside support within a school, as in the form of a shadow assistant (Johansson, 2016). Moreover, schooling was not simply taking place within the classroom. Parents supplemented their child’s learning through other means, such as undergoing training on how to teach the child themselves, employing private tutors and acquiring external specialist support from psychologists, special educators and occupational therapists. Parents in this study spent significant amount of time teaching their child. This is not surprising as it is well acknowledged in research studies that in a country where awareness and facilities for autism are limited, parents take on the role of educators (Brezis et al., 2015; Narayan et al., 2005). Neither is this centrality of parents in the educational space something specific to autism. Findings from Das and Kattumuri’s (2011) and Naraian’s (2013) study exemplify the central role of parents in accessing schooling, not only the physical space but also the curriculum.

Conclusion Context is of utmost importance when it comes to disability and education in the South. In the past, context has often been relegated to the periphery and has led to a neglect of the actual realities, dilemmas, strengths and concerns within settings in

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the South. This chapter has discussed the importance of listening to the local context, what is happening within these spaces, the stakeholder involvement and the deeply embedded cultural values, alongside wider changes that are impacting education of children with disabilities globally and nationally. Situationally appropriate and effective solutions for education of children with disabilities have to be based on an in-depth local contextualized understanding. By appreciating and incorporating a deeper understanding of the local context in exploring schooling of children with disabilities, different nuances of the phenomenon become visible. This has been illustrated in the chapter by drawing on insights from an empirical study about children with autism in urban India, and this adds to a growing body of research that demonstrates this from countries in the South. By applying the metaphor of spaces to the findings, the fluidity, complexity and interrelatedness of the medical, political, social and educational spaces that influence how education of children with disabilities is taking shape are captured. This in turn enabled a deeper and holistic understanding of how the wider context informed, framed and limited various stakeholders’ responses to schooling of children with autism.

Summary of key points ●

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There is an increasing but varying recognition of the local context in education and disability debates in the South. Contextualized research from African and Asian countries provides a rich and nuanced account of the actual realities, dilemmas, strengths and concerns within specific settings. The value of adopting space as a metaphor for elucidating and explicating the significance of the local context is emphasized. Drawing on insights from an empirical study from urban India, the fluidity, complexity and interrelatedness of the medical, political, social and educational spaces in shaping education of children with autism are discussed. Space also enabled a dynamic and holistic understanding of how the wider context informed, framed and limited various stakeholders’ responses to schooling of children with autism.

Suggested questions for discussion 1. How might contextualization of education of children with disabilities help you to develop appropriate services where you are? 2. Identify two disabilities in your setting, one disability that has received significant attention and one that has been marginalized. Use the medical, political, social and educational spaces to discuss how the education of these children/young people with these disabilities takes shape? 3. Think of other ‘spaces’ that could shed light on education of children with disabilities in your setting.

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Singal, N. (2009). Education of Children with Disabilities in India. Background paper prepared for the Education for All Global Monitoring Report 2010. Paris. Available online: http://unesdoc.unesco.org/images/0018/001866/186611e.pdf Singal, N. (2014). Education of Children with Disabilities in India and Pakistan: An Analysis of Developments since 2000. Paris. Retrieved from http://unesdoc.unesco.org/ images/0023/002324/232424e.pdf&ved=2ahUKEwiHp6qJz_bbAhUIBiwKHdfVCFcQF jABegQIABAB&usg=AOvVaw1OnM43b_WWcWxv3ZTUjq_S. Singal, N., Daley, T. C., & Barua, M. (2010). The Impact of the Popular Media on Awareness: Aap Ki Antara. Philadelphia: Paper presented at the IMFAR. Singal, N. & Jeffery, R. (2011). Inclusive education in India. The struggle for quality in consonance with equity. In A. J. Artiles, E. B. Kozleski, & F. R. Waitoller (Eds.), Inclusive Education. Examining Equity on Five Continents. Cambridge: Harvard Education Press. Singal, N., Jeffery, R., Jain, A., & Sood, N. (2011). The enabling role of education in the lives of young people with disabilities in India: Achieved and desired outcomes. International Journal of Inclusive Education, 15(10), 1205–1218. doi:10.1080/13603116 .2011.555076. Singal, N. & Muthukrishna, N. (2014). Education, childhood and disability in countries of the South: Re-positioning the debates. Childhood, 21(3), 293–307. doi:10.1177/0907568214529600. Singal, N., & Muthukrishna, N. (2016). Reflexive Re-storying of Inclusive Education: Evidence from India and South Africa. In S. Grech and K. Soldatic (Eds.), Disability in the Global South: the Critical Handbook (pp. 199–216). Springer: Cham. Singh, V. & Ghai, A. (2009). Notions of self: Lived realities of children with disabilities. Disability & Society, 24(2), 129–145. doi:10.1080/09687590802652363. Soldatic, K., Morgan, H., & Roulstone, A. (Eds.) (2014). Disability, Spaces and Places of Policy Exclusion (Routledge Advances in Disability Studies). London: Routledge. Swain, J., Gillman, M., & Heyman, B. (2000). What’s in a name? The implications of diagnosis for people with learning difficulties and their family carers. Disability and Society, 15(3), 389–409. doi:10.1080/713661959. Taneja Johansson, S. (2014a). A critical and contextual approach to inclusive education: Perspectives from an Indian context. International Journal of Inclusive Education, 18(12), 1219–1236. doi:10.1080/13603116.2014.885594. Taneja Johansson, S. (2014b). ‘He is intelligent but different’: Stakeholders’ perspectives on children on the autism spectrum in an urban Indian school context. International Journal of Disability, Development and Education, 61(4), 416–433. doi:10.1080/103491 2X.2014.955786. Taneja Johansson, S. (2015). Autism-in-context. An investigation of schooling of children with a diagnosis of autism in urban India. Diss. Göteborg: Acta universitatis Gothoburgensis. Available online: http://hdl.handle.net/2077/40534 Thomas, P. (2005). Mainstreaming Disability in Development: India Country Report. London. Available online: http://disabilitykar.net/research/pol_India.html UNESCO (1994). The Salamanca Statement and Framework for Action on Special Needs Education. Madrid: UNESCO/Ministry of Education and Science. Urwick, J. & Elliott, J. (2010). International orthodoxy versus national realities: Inclusive schooling and the education of children with disabilities in Lesotho. Comparative Education, 46(2), 137–150. doi:10.1080/03050061003775421. Vaidya, S. (2008). A Sociological Study of Families of Autistic Children in Delhi (Unpublished thesis), New Delhi: Jawaharlal Nehru University.

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Notes 1 Private specialists offer services to parents and the child with autism and are not linked to the school. Five special educators, three child psychiatrists, two psychologists and one paediatrician were interviewed. 2 Private schools are not obliged to follow government policy. 3 In December 2016, the Rights of Persons with Disabilities Act, 2016, was passed and in 2017 it replaced the People with Disabilities Act, 1995. 4 There is also geographical scholarship about space, place and disability (e.g. Soldatic, Morgan, & Roulstone, 2014) and a growing debate around space and place within educational settings (e.g. Kerr, Dyson, & Raffo, 2014), but to reiterate, it is used here as a metaphor to expand on the notion of a context. 5 The Chief Commissioner for Persons with Disabilities is mandated to redress the grievances related to deprivation of rights of persons with disabilities and nonimplementation of laws and other regulations issued by the state governments for welfare of persons with disabilities.

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The Application of Inclusive Principles and Practice in Schools in South India: Successes and Challenges Richard Rose (University of Northampton) and Jayashree Rajanahally (Brindavan Education Trust)

Introduction In this chapter, while acknowledging the significant progress that has been made towards developing a more inclusive education system in India, we suggest that the stated intentions of the Indian government to create more equitable school provision face many challenges. Not least of these is the mismatch between the intentions to create inclusive schools and a teaching profession that has received inadequate training to address the needs of a diverse school population. Recent policy initiatives, and particularly the implementation of the Right to Free and Compulsory Education Act (RTE) (Ministry of Human Resource Development, 2009), have placed an onus upon schools to meet the needs of students who have previously been marginalized and excluded. Across India, universities and state providers of professional development are striving to ensure that teachers increase their confidence through gaining the skills, knowledge and understanding that enables them to create more inclusive classrooms (Das, Gichuru, & Singh, 2013). Throughout this chapter, we argue that this is a critical factor in establishing sound foundations for a more equitable approach to education. The relationship between theoretical understanding of those factors that lead to marginalization and the skills required for creating a more inclusive learning environment is explored and exemplified.

Policy for inclusion within an Indian context The notion of an entitlement to education for all children within an Indian context has been well established for many years (Govinda & Bandyopadhyay, 2010; Miles, 1997) and builds upon a long tradition of valuing formal education within the country

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(Ghosh, 2000). The authors of the Indian constitution (Government of India, 1949), in recognizing the importance of ensuring access to schooling as a means of developing national stability and an equitable society, stated in Article 45: ‘The State shall endeavour to provide within a period of ten years from the commencement of this Constitution for free and compulsory education for all children until they complete the age of fourteen years’ (Government of India, 1949). This intention to provide universal education within the country is often credited to Dr B. R. Ambedkar who oversaw the writing of the Indian Constitution and held strong beliefs with regard to the power of education to transform the lives of those from marginalized and oppressed communities. Ambedkar, who himself came from an oppressed Dalit community, recognized that the educational opportunities afforded to him were denied to many who came from economically disadvantaged groups, or those from scheduled tribes or scheduled castes, and that the Indian education system was in many respects exclusive and elitist (Chatterjee, 2007; Kumar, 2014). Writing of his influence upon post-independence educational development in India, Sharma (2015, p. 251) quotes Ambedkar as stating that, ‘it is education which is the right weapon to cut the social slavery and it is education which will enlighten the downtrodden masses to come up and gain social status, economic betterment and political freedom’. Despite this assertion and the oft-stated intentions of the Indian government to ensure a more equitable education system, the achievement of universal education within India has remained an elusive ideal (Juneja, 2015; Singal, 2010; Unnikrishnan, 2010). However, it is important to acknowledge the significant efforts that have been made to improve educational opportunities for those previously denied formal schooling within the country. In 2015, the Global Monitoring Report (United Nations Educational, Scientific and Cultural Organization, 2015) praised the Indian government for the implementation of policies resulting in increased enrolment of children in schools. In particular, it was noted that progress had been made in respect of the enrolment of girls, though inconsistency across states remains a challenge in this area. Initiatives such as the provision of midday meals and improved sanitation have undoubtedly had a positive impact upon increased enrolment (Alfridi, 2011; Behrman, Parker, & Todd, 2013). The Annual Status of Education Report (ASER) (ASER Centre, 2014) confirmed improved enrolment rates across India but also reported that there were significant discrepancies in the acquisition of basic skills by children across states. While enrolment rates in India have improved greatly in recent years, there are still many issues surrounding attendance. Concerns have been particularly expressed in relation to government schools with levels of attendance reported to be as low as 50 per cent in some northeastern states, while similar schools in Kerala and Tamil Nadu in the south were achieving above 90 per cent attendance rates (Ministry of Human Resource Development, 2014). Such discrepancies are not surprising when considering the inequitable distribution of economic and social resources across this populous and diverse nation. However, this situation is being further exacerbated by an escalating market-driven economic model founded upon a belief that growth requires a reduction in government-driven initiatives. As Mander (2015) suggests, such an approach militates against public investment in education, health and social

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welfare and invariably fuels greater inequality. This is a view endorsed by Danforth and Naraian (2015) who suggest that exclusion as a result of poverty is a critical issue in India today in a climate where economic growth is benefiting a burgeoning middle class, while those in hardship are being further marginalized both socially and economically. At a time when educational opportunities for children from the wealthier sections of Indian society are on a par with those in the world’s most affluent nations, the majority of the country’s population continue to receive an education that is of a lesser standard.

Obstacles to progress Establishing a definitive definition of inclusive education has proven to be a challenge that has vexed many policymakers and researchers internationally. While in some countries the focus on developing inclusive education has been upon the provision of mainstream school access for children with disabilities or difficulties with learning, in India and many other countries of socio-economic disadvantage, there has been a greater recognition of the interrelationship between issues of poverty, gender, social standing and disability (Giffard-Lindsay, 2007). It is also important to recognize that inclusion is not solely an educational issue and that people with disabilities and those from other marginalized groups have been excluded from the mainstream of society for many years. The authors of this chapter have therefore adopted a definition of inclusion based upon that first adopted by Inclusion International, an organization initiated by people with disabilities to campaign for their right to be included in all aspects of society. This definition states that ‘inclusion refers to the opportunity for persons with a disability to participate fully in all of the educational, employment, consumer, recreational, community and domestic activities that typify everyday society’ (Inclusion International, 1996). Much has been written about the obstacles that may inhibit progress towards the development of a more inclusive education system in India (Sharma, Morre, & Sonawane, 2009; Singal, 2010). In many instances, inquiry into teacher attitudes and expectations has provided a focus for discussion, alongside a consideration of cultural influences and established educational traditions. However, as greater efforts have been made to implement inclusion policy at both state and school levels, some attention is now being given to conditions in schools, the provision of appropriate resourcing and discussions of pedagogy (Ruffina & Ahmed Bawa, 2012). Central to many of the debates in this area has been the necessity to provide a better trained workforce of teachers and to improve professional understanding of how teaching practices may be changed to promote classroom justice and effective learning. As Kourkoutas, Vitalaki and Fowler (2015) identify, in many instances, teachers recognize the isolation and exclusion of students in their schools but feel inadequate in addressing this situation because they lack the understanding of either causal factors or the skills required to create a learning environment that is more conducive to inclusion. Data reported by Bhatnagar and Das (2013) from a survey of 470 teachers in Delhi established a positive correlation between the training in special education provided to teachers and positive attitudes towards inclusive education. This finding reinforces

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those from research conducted elsewhere (Salend, 2010; Savolainen, Engelbrecht, Nel, & Malinena, 2012), though a more detailed analysis of how the training impacts upon classroom practice has received less attention in the literature from India. In recent years, increased attention to inclusive education has been given in a number of teacher training courses and via professional development opportunities across India (Pandey, 2006). In this chapter, we propose that greater consideration now needs to be given not only to course content but also to the support provided to teachers and schools in order to address issues of transfer of learning from courses to classroom, evaluation of impact and the further dissemination of innovative practice.

Professional development progress and challenges The provision of teacher training and professional development for teachers in India is long established and has often included elements focused upon planning for children with special educational needs or those from other marginalized groups (Hegarty & Alur, 2002). In the late twentieth century, a number of governmentsupported initiatives aimed to promote more equitable approaches to education. These included the introduction of a programme called the Integrated Education of Disabled Children (IEDC) (Ministry of Welfare, 1974), which sought to promote and support the integration of students with mild to moderate disabilities into regular schools. While the intention of this programme was clearly stated, it has been suggested that its success was limited for a number of reasons. Rane (1983) states that a lack of adequately trained teachers, poor awareness of the needs of children with disabilities or special educational needs, and under-resourcing of schools were presenting significant obstacles to progress and impeded the potential effectiveness of the IEDC. This and other initiatives have also been inhibited at times by a lack of awareness among families of their rights to secure access and facilities in support of their child with a disability or special educational need (Kuppusamy, Narayan, & Nair, 2012). Later initiatives, such as the Project for Integrated Education for the Disabled (PIED) (Ministry of Human Resource Development, 1987) and the District Primary Education Programme (DPED) (Ministry of Human Resource Development, 1994), attempted to build upon the IEDC programme by adopting what was described as a ‘Composite Area Approach’. This scheme designated all regular schools within a specified location, referred to as a block, as schools that would be supported in developing provision for children with disabilities and special educational needs (Gitanjali, 2004; Sharma & Deppeler, 2005). These programmes served to raise awareness among education policymakers and teachers with further support coming from the emphasis upon rights and access stated within the Persons with Disabilities Act (Ministry of Social Justice and Empowerment, 1995), which had some influence upon the professional development of teachers. However, a survey of teachers conducted by Saravanabhavan and Saravanabhavan (2010) indicated that despite these significant legislative changes, the awareness of teachers in respect of children with disabilities and special educational needs remained at a relatively low level.

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Initiatives such as the central government’s establishment of District Institutes of Education and Training (DIETS) established in 1986 provide an indication of some recognition of the challenges faced by teachers in addressing the increasingly complex demands of providing education for a diverse population. These regional centres of guidance have secured a base for the professional development of teachers as well as a forum for research and development. Within the constitution of the DIETS is an intention that the support which they provide should maintain a focus upon those groups that have been traditionally marginalized or disadvantaged within the education system. In making this commitment, the government identified that priority should be given to girls and women, those from scheduled castes and scheduled tribes, minorities, the handicapped, and other educationally disadvantaged groups including working children, slum dwellers and inhabitants of hilly, desert and other inaccessible areas. While the intention of the DIETS was carefully defined, reports of their ability to deliver on these expectations suggest that they have been faced by many challenges. Mehrotra (2006) found that the training provided was often theoretical and general and did not address the practicalities of day-to-day classroom management issues. This confirmed the findings of Dyer (2004) who expressed concerns that the professional development provided through DIETS was often delivered by persons who had sound theoretical knowledge, but that this was rarely underpinned by practical experience or a realistic perception of the difficulties confronted by teachers who were being expected to provide an effective education to a diverse classroom population. More recently, the implementation of the Right of Children to Free and Compulsory Education Act (RTE) (Ministry of Human Resource Development, 2009) has placed a renewed emphasis upon the encouragement of more inclusive schools. Within the requirements of this act (section 12) is the introduction of a quota system whereby every recognized school, including private unaided schools (those managed by private agencies), should admit each year in class 1 at least 25 per cent of their pupils from economically weaker sections of society and disadvantaged groups, including those with disabilities, and must provide them free and compulsory elementary education. Though undoubtedly well intentioned, this significant legislation, while supporting a number of positive initiatives and raising the awareness of state education officials (Soni & Rahman, 2013), is not without its critics. Rai (2014) is particularly critical of the fact that the act applies only to children between the ages of 6 and 14 years. At a time when early intervention and improvements in nursery provision have been emphasized as priorities in India, the RTE appears to ignore the importance of this phase of learning. The same author similarly indicates that this important legislation has been introduced without adequate consideration being given to the preparation of teachers who are required to oversee such significant change. This may in part account for the fact that only 10 per cent of schools in India are currently compliant with all the expectations of the act (Rai, 2014). Cheruvalath (2015) has similar misgivings about the potential for beneficial change from the RTE, suggesting that in a country where poverty remains pervasive, the act makes unrealistic provision for the poorest members of Indian society. She acknowledges that for a few children from lower middle-income classes, there will certainly be benefits but that the RTE fails to recognize the reasons why children from the poorest strands of society do not attend school, including the necessity to be wage

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earners in order to help support their families. While the RTE has renewed a focus upon the responsibilities of private unaided schools to cater for a more diverse population, Cheruvalath suggests that this will have little impact upon government schools that are already providing education for the poorest members of Indian society. In these schools, she states, there are a shortage of teachers, a problem of low salaries, overcrowded classrooms, a lack of adequate infrastructure and few basic resources. Furthermore, teachers in these schools are often the least well prepared and are often lacking in the motivation required to create more inclusive learning opportunities. It is evident that there is an acknowledgement on the part of central government of the need to support the development of more inclusive schools. However, it is equally apparent that progress in this area is being inhibited by a number of factors, not least of which is a failure to address the needs of the workforce to be adequately prepared to deliver the requirements of new policies. There is much to be learned from recent studies of teacher development in inclusion that might be seen as helpful as consideration is given to how teachers can be supported in the achievement of more inclusive learning environments. In particular, two significant factors emerge from the literature. First, those undertaking professional development need to have opportunities to relate theory to practice and to understand how the ideas being developed can have practical application in a range of contexts (Danforth & Naraian, 2015; Florian, 2012; Thirumurthy & Jayaraman, 2007). This requires that courses for teachers are delivered using an interactive approach rather than the more didactic and lecture-oriented methods that have been the norm in India (Das, Gichuru, & Singh, 2013; George & Sankaranarayanan, 2007). Secondly, more effective means of disseminating innovative and effective classroom-based practice need to be developed in order that teachers have an opportunity to share learning and gain greater insights into successful approaches for developing inclusive classrooms (Jha, 2010; Le Fanu, 2013; Ruffina & Ahmed Bawa, 2012).

Having an impact or hitting brick walls? The issues of relating theory to practice and the dissemination of learning were central features of a survey and face-to-face semi-structured interviews conducted with twenty teachers who had completed a two-year part-time course of training in the area of inclusive education in Bangalore. These teachers, all female, came from a range of backgrounds and schools. All had a recognized teaching qualification, and several had postgraduate degrees and the majority were working in private schools. Each of these teachers had undertaken training related to planning inclusive policies, developing inclusive approaches to assessment, planning and teaching, working with families and communities, and understanding the causes of marginalization. All were qualified and experienced teachers, and during their course, they had completed a series of written assignments and tasks, including a detailed small-scale research project focused upon an aspect of work in their own institution. The course was taught by tutors with experience of teaching in a number of schools and other education establishments both in India and the UK, and it comprised a series of seminars and practical workshops delivered through five modules taught over 150

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hours wherein the teachers were encouraged to develop resources and trial teaching approaches and relate learning to their own professional experiences and situations. Throughout the course, the tutors drew upon the experience of these teachers to test theories and debate issues surrounding practices that were considered to encourage participation in learning by pupils who have traditionally been marginalized and excluded. The importance of providing practical examples of teaching from Indian classrooms, work with local families and the application of Indian resources was fundamental to teaching on the course with tutors ever conscious of the potential risk that inclusion would simply be seen as a Western concept with limited applicability in a local context (Rose, Doveston, Rajanahally, & Jament, 2014). The course was assessed through a series of four written assignments, each of 5,000 words length through which participants were encouraged to take an aspect of learning from the course, discuss this in relation to a body of literature and consider its practical application with students with special educational needs. The participants were encouraged to select topics that were closely related to their own professional circumstances and to evaluate the practicalities of changing practice and the outcomes of their interventions. Throughout the course, the participants were encouraged to critique their current practice in a manner that emphasized the positive aspects of their teaching, while seeking change that would facilitate greater student participation in classrooms and increase the understanding of families and colleagues. The final longer piece of work completed by participants comprised the planning and undertaking of a research project which investigated one aspect of the provision of inclusion within their own working context. While evaluations from three cohorts of participant teachers who had undertaken the course indicated that they believed that they had increased awareness and understanding of inclusion and had developed a range of approaches that were applicable within their classrooms, the course tutors recognized that the successful application and sustainability of learning would only be evident after a period of time following the conclusion of the course. It was with this consideration in mind that data was collected from a cohort of students a year after their course completion. As is the case with many professional development courses, it is reasonable to assume that the majority of participants attend because they already have a level of commitment to the course focus. Investigations into teacher attitudes towards inclusive schooling, including those conducted in India, have dominated research and the literature in this area (Parasuram, 2006; Sharma, Morre, & Sonawane, 2009). However, several course participants reported that while they felt a commitment towards inclusion, they were apprehensive about how this might be practically achieved. The relationship between practical application of skills and the successful implementation of teaching and learning approaches in the classroom was a theme that emerged from many of the interviews with teachers who had attended the course. Several admitted to being unsure of the application of inclusive practices within the classroom at the outset of the course, and some commented on the ways in which their attitudes and expectations had changed as their studies progressed. I have learnt how to make physical accommodations to make a classroom more inclusive of children with SEN. My values as a teacher and my expectations have

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been transformed and this has greatly affected my attitude towards inclusion and inculcated deep within me a desire to be inclusive. (Teacher working as special educator in primary school)

The teachers were initially asked to reflect generally on the course and to provide an overview of what they had learned and how this might have benefited their work. In response to this, several described the importance of being able to place inclusion in India in the context of other countries and situations. One teacher commented: The course has given me a greater understanding and exposure to how inclusion and special education works around different parts of the world. It has given me an opportunity to look at various barriers/problems to inclusion and also explore solutions in different situations and with children of different disabilities. It has given me a wider and deeper understanding on the various facets of inclusion around the world. (Senior teacher in secondary school)

It was evident from the comments made by other respondents that this ability to see what could be learnt from elsewhere, and how approaches might be modified for specific local circumstances, was seen as valuable. In particular, this more global analysis had provided a focus upon inclusion in a broader context, whereas for many of the course participants, this had been perceived largely as a special educational needs issue. The course has given me a different perspective to think in terms of inclusion. It is not just to apply the same to classroom/children but to look at inclusion of all marginalised aspects of learning. To ask questions, not to be judgemental and to understand various aspects of learning in a macro format is definitely the practical learning that I have gained. (Teacher from primary school)

The interrelationship between issues of poverty, gender, caste and disability had been emphasized and explored throughout the course and was seen by several of the teachers to have enabled them to reconsider the socio-economic influences that pertained within their own schools. Cultural disparities definitely are visible in some situations. Socio economic factors negatively contribute to the challenges faced by children and families, as accessibility to facilities of many types which are usually assumed possible is a challenge in my own working situation. (Teacher working for NGO supporting children with disabilities in an area of socio-economic disadvantage)

However, several commented that they were conscious that their own understanding of these matters was now significantly different from that of some of their colleagues with whom they worked. In some instances, they continue to work alongside teachers who have fixed ideas and low expectations of their pupils based upon their gender, caste or home situation. This had been a source of some frustration and seems unlikely

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to change unless the opportunity for professional development provided on the course could be extended through in-school training. The teachers were asked to provide examples of anything they had learned that they had been able to apply directly in their teaching situation. In response to this, most gave generalized responses related to the implementation of more inclusive approaches to assessment and planning, differentiated teaching or the development of individual education plans. Comments were typically of the following nature: Earlier I had no idea about formative and summative assessments, or multi-sensory methods of teaching. So I was able to apply some of the assessment methods and also have used multi-sensory methods in class. (Teacher from primary school)

Some were more specific as, for example, seen in the response of one teacher who described: Designing a curriculum and applying ‘circle time’ technique or rather adapting it to a large group with the opportunity to develop self–awareness, better communication skills such as listening, being respectful and building better relationships ultimately leading to self–advocacy. (Teacher from primary school)

When asked about the effectiveness of this intervention, she commented: ‘In the limited time that I have tried this, it does seem to make the children happier. Of course, as yet, with a couple of children, I cannot confidently say so.’ Another teacher reported: I learned about positive reinforcement as a behaviour management strategy. I have been a part of the team that designed a ‘CAUGHT BEING GOOD’ programme in our school to elicit and reinforce positive behaviour from our students. (Teacher working as special educator in primary school)

It was evident from the responses that the application of learning from the course was dependent upon specific circumstances. In some instances, students were able to inform those priorities or challenges that had already been established in the school. This was generally seen as easier than committing to new initiatives that would require changing the thinking and approaches adopted by significant numbers of colleagues. In the example provided above, teachers in the school had identified a number of difficulties associated with student behaviour and its management. This meant that they were receptive to new ideas and approaches, affording the former student an opportunity to introduce learning from the course at a time when teachers were most likely to be receptive. Several students from the course commented upon this issue of school climate as an important consideration for the introduction of ideas that would be seen as coming from outside of the school. Ownership of learning is clearly an issue that needs to be considered by those who provide professional learning, particularly if they have aspirations that this should have benefits beyond the individual student and the ability to promote change in schools.

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A valid criticism of professional development is that it often impacts mainly on the individual attending a course and therefore has little effect in terms of changing schools (Desimone, Porter, Garet, Kwang, & Birman, 2002). It was therefore not particularly surprising to find that when asked specifically about opportunities to disseminate their learning to colleagues, a mixed picture emerged. Examples were provided of the extension of learning within schools, sometimes at the level of interaction with individual colleagues: Knowledge gained in the course has provided an opportunity to exchange ideas, observations and thoughts with other teachers at the school. Some of the teachers have provided me with positive feedback after the implementation of few strategies I suggested. To state an example, I requested the class teacher of a particular student to engage him in art activity (water colour painting) whenever he displayed noncompliant behaviour which resulted in anger. The water colouring had calming abilities; it was therapeutic for the child. (Teacher working as special educator in primary school)

A few teachers had experienced more formal opportunities to share their learning; the most developed of these was described in the following terms: We have formulated a training programme for mainstream school teachers in the form of workshop modules on ‘Classroom Techniques for Handling Students with Mixed Learning Abilities’. There are four modules namely: Identification of students with Mixed Abilities, Behaviour Management, Learning Strategies, and Assessments. (Senior teacher in secondary school)

However, more typical were comments such as the following: Not in an organised or large set up, but in bits and pieces as and when the opportunity presented. The learning has been shared with colleagues and seniors at school and some friends and practitioners known personally. (Teacher from primary school)

While none had encountered open hostility to the ideas taken back to their schools, it is clear that for several the ability to influence change beyond their own classrooms or among a small number of receptive colleagues is limited. This is certainly an issue that needs far greater consideration on the part of those who deliver courses of this nature. I think, not having a free hand to implement the learning has been a hindrance. Since schools have standardised, fixed systems, getting something changed or tweaked requires a huge round of approvals. Also, there is a natural and inherent resistance to change and people are comfortable just continuing with what is being followed although there may be better ways of doing something. Sometimes there are lots of practical and administrative issues associated. Changing mind sets and asking people to think in a different way also takes a lot of time and perseverance

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and most often, this mental barrier is the most difficult to cross. (Teacher working as special educator in secondary school)

Learning from success stories As with any other accredited course, the application of inclusive principles and practice in schools can in part be evaluated by the assessed practical tasks carried out by students. In particular, the dissertations written by students, based upon a small-scale empirical research project, afford an opportunity to assess how the skills, knowledge and understanding imparted through the course are being applied. An appraisal of the projects undertaken by students indicates that most were able to develop practice based upon ideas garnered through their course-focused studies. Scrutiny of this work provided examples of the application of principles of behaviour management, the introduction of differentiated approaches to teaching, modification of school assessment procedures, planning for periods of educational transition and initiatives related to parental involvement, amongst several topics that could be directly related to course content. Furthermore, the evidence gained from these research projects suggests that changes made had been seen to have benefits not only for course participants but also for pupils, teachers and parents and that the experience of conducting these studies had reinforced the commitment of these individual course members towards adopting more inclusive approaches to teaching and learning. As an example, one student developed a case study of a girl who was a firstgeneration learner with a physical disability living in a rural community. Applying principles adopted from the course, she involved this girl’s mother and grandmother in discussions about her needs and in planning the implementation of a personalized approach to learning. These significant family members had previously identified their own limited understanding of the girl’s needs, and this was seen to have resulted in low expectations of what she might achieve. Following the interventions of this student, the girl who was the subject of the case study reported that her family became more willing to encourage her to participate in household tasks, that she now felt that her abilities were being better appreciated and that there was a greater focus on what she could achieve. In another study undertaken in a primary school, a student conducted a survey of teachers’ approaches to behaviour management. This enabled her to identify the strategies being used to manage what were perceived as difficult student behaviours. On the basis of this survey, she identified examples of good practice and worked with teachers to develop strategies for behaviour management building on these. By valuing, respecting and including the ideas of the teachers from her school, this student applied an approach that had been taught on the course in order to improve classroom management within her school in a manner that encouraged the greater inclusion of students who were perceived as being difficult. While the impact upon these specific teachers is evident from the evaluative work undertaken for the course, issues of sustainability and dissemination remain challenging. When undertaking work for a course, teachers are often well motivated

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and eager to experiment with new ideas. The ‘post-study period’ may often prove more challenging in terms of maintaining change and seeking further ways of developing new practices (Avalos, 2011). In part, sustainability is dependent upon the levels of support that may be available within a school. While participating on a course much of the support required to maintain motivation is provided by tutors and fellow students, when this is removed, it is not always easy to obtain similar levels of enthusiasm in the workplace. It is therefore necessary to examine the means through which support systems may be established for the longer-term mentoring of colleagues who are trying to effect change within their schools. As a commitment to the course described in this chapter, tutors have made regular visits to students’ schools in order to run whole school workshops or work with small groups of teachers. Students participating on the course have commented on the positive impact that this has had upon their own credibility and status in school. In some instances, simply visiting a school appears to have boosted student confidence and has been seen as a mark of respect of the tutor towards both the student and members of school staff and a commitment that goes beyond the professional development classroom. Several of the teachers who completed the course suggest that change at a whole school level appears to be overambitious and that they are more likely to adopt a strategy of working with selected, receptive colleagues in the hope that they together may have some impact. The comment below from a teacher asked about whether she was having an impact on her school is typical of many received during this evaluative process. Not on a large magnitude, but definitely on a one on one interaction with a few interested teachers and some parents. (Teacher working as special educator in primary school)

While dissemination, even at a parochial level, presents a number of significant challenges, it remains important to examine opportunities to share learning with a wider audience. With this objective in mind, teachers completing courses should be encouraged to present their work at conferences and other events and where appropriate to publish papers based upon their studies in academic journals and professional magazines. A number of teachers who have undertaken the course in Bangalore have been successful in having papers based upon their work accepted for publication (Haridarshan, 2015; Philip, 2015; Vellal, 2015). Such a step requires considerable confidence on the part of teachers who have not previously ventured into the domain of academic publication. However, there is surely a responsibility on the part of tutors running such courses to ensure every support to enable their students to bring their work to a wider audience, and in some instances, this may require joint publication in order to provide teachers with the initial confidence to move forward (Mahmood & Visser, 2015).

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Conclusion The assumptions made about direct transferability of inclusion as a concept from economically advantaged societies to those where access to resources is more limited need to be questioned. Much has been written about teacher attitudes and expectations in respect of students with disabilities and special educational needs in India (Parasurum, 2006; Sharma, Morre, & Sonawane, 2009), and there remain many cultural challenges that need to be addressed in this area. However, attitudes are unlikely to change until such time as teachers feel that they have the confidence, skills and knowledge to be able to work practically with children of diverse needs in their classrooms. While theoretical constructs of inclusion and an understanding of theories of learning must form an essential foundation for developing inclusion (Waitoller & Artiles, 2013), courses that aim to effect change must be equally grounded in the development of classroom practices. This demands that a dialogue between the providers of professional development and those intended recipients of training is maintained throughout the process. Teachers and school principals who feel that they have some ownership of course content and have invested in supporting the development of professional development are more likely to be sympathetic to the ideas brought back to schools by teachers, and as has been indicated by Danforth and Naraian (2015), the promotion of a dialogue between professionals is essential if a climate conducive to change is to be achieved and inclusion recognized as making a positive contribution to educational development. The simplistic presentation of exemplary practices from one context in the hope that this may result in changes to procedures in a different situation is at best naive, and in some circumstances, may be viewed as imperialistic. It is essential that course participants are encouraged to bring their own experiences into the teacher training arena and that tutors make greater efforts to draw upon resources and exemplars from environments that are familiar to students. Teachers who attend courses are at times reluctant to challenge the ideas presented by their ‘expert’ tutors. In some instances, this situation has arisen within an educational culture that encourages students to pay unquestioned reverential respect to their tutors (Gelmon & Billig, 2007). Early in the course discussed in this chapter, students commented that an emphasis upon group work and the opportunity to debate ideas were approaches that they greatly valued, though for some this approach was initially challenging as it was different from their previous learning encounters. They also appreciated the fact that their own professional experiences were respected and seen as critical in understanding how progress towards achieving greater inclusion in classrooms could be made. Establishing an emphasis upon learning as a partnership between teachers and students was seen by the course tutors as an important principle of course delivery. In particular, it was believed that by modelling an inclusive approach to teaching and assessment through the management and delivery of the course, it would be possible to discuss issues of inclusion and equity and to demonstrate the impact that such approaches can have upon the learner. Evidence from course

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evaluations indicates that while many of the participants found this more open and democratic and less didactic style of learning challenging at the outset, they were able to identify positive developments in respect of their increased confidence and ability to understand principles of inclusion. The impact of professional development upon changes of attitude, understanding and the expectations of teachers towards fostering inclusive practice has been considered by a number of researchers (Avramidis & Kalyva, 2007; Chong Suk Ching, Forlin, & Au, 2007). Less has been reported about the impact that professional development might have upon changing practice in schools (Kaikkonen, 2010). This should be seen as a priority area for consideration by both the providers of professional development and those who are researching and evaluating its effectiveness. The provision of professional development is important, but equal attention should be given to the ‘post-course completion period’, during which we would hope that new learning is being applied. This is a much-neglected area of professional development in education and is rarely built into courses as a substantive part of the professional development procedure. Evidence from the authors of this chapter suggests that teachers who complete courses and then find difficulties in implementing their learning are in danger of becoming disillusioned and are less likely to persist in applying ideas and developing these to a successful outcome. In situations where this new learning may be regarded with suspicion and seen as radical by course participants’ peers, there are additional difficulties in achieving desirable change. We would therefore contend that if sustainability is to be achieved, responsibility should be placed upon course tutors to support, evaluate and monitor the application of learning beyond the end of the course and as an integral part of professional development. We would further suggest that this is likely to be achieved in situations where tutors and students form an alliance to work directly in the schools in which the students are employed. There is clear evidence that many teachers in India are committed to the development of approaches to teaching in their schools that are more inclusive and supportive of a diverse population of learners. The professionalism and commitment of these teachers and their role as leaders in the promotion of a more equitable education system need to be fostered and encouraged. Establishing partnerships between experienced tutors and teachers to find effective ways of delivering professional development remains a challenge, but it is one that is surely worthy of greater consideration.

Summary of key points ●

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The effective delivery of professional development for the promotion of inclusive schooling must take account of local conditions and context. This is best achieved by establishing partnerships between local teachers, school principals and the tutors who will deliver the training. Tutors should familiarize themselves with the conditions in local schools by spending time working alongside teachers in classrooms and establishing networks with teacher groups and professional organizations. Recognition of existing good practices in schools is also important.

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If the purpose of professional development is the promotion of change and the provision of support to teachers, children, families and schools, it is essential that a clear link is established between the theoretical underpinning of course content and the practical application of learning. After course completion, students may require support in disseminating their work and discussing how their learning may be applied in schools. The expertise of tutors is critical in providing this support to enable students to share ideas with professional colleagues and reach a wider audience. Further research is required into the application of learning from professional development courses and the impact that this has both on changes in classroom practices and on the learning of students with special educational needs.

Suggested questions for discussion 1. How might those teachers who complete courses of professional development in inclusion be encouraged to disseminate their learning in order to support colleagues in their schools? 2. How might we address the cultural challenges of providing professional development in inclusive education when research and literature in this area are largely conducted in countries with greater socio-economic advantages? 3. What systems and procedures might we develop in order to ensure the sustainability of new approaches to support inclusion introduced into schools?

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Chong Suk Ching, S., Forlin, C., & Au, M. L. (2007). The influence of an inclusive education course on attitude change of pre-service secondary teachers in Hong Kong. Asia-Pacific Journal of Teacher Education, 35(2), 161–179. Danforth, S. & Naraian, S. (2015). This new field of inclusive education: Beginning a dialogue on conceptual foundations. Intellectual and Developmental Disabilities, 53(1), 70–85. Das, A., Gichuru, M., & Singh, A. (2013). Implementing inclusive education in Delhi, India: Regular school teachers’ preferences for professional development delivery modes. Professional Development in Education, 39(5), 698–711. Desimone, L., Porter, A. C., Garet, M. S., Kwang, S. Y., & Birman, B. F. (2002). Effects of professional development on teachers’ instruction: Results from a three-year longitudinal study. Educational Evaluation and Policy Analysis, 24(2), 81–112. Dyer, C. (2004). District Institutes of Education and Training: A Comparative Study in Three Indian States. Report no. 55 in ‘Researching the Issues’ series. London: Department for International Development. Florian, L. (2012). Preparing teachers to work in inclusive classrooms: Key lessons for the professional development of teacher educators from Scotland’s Inclusive Practice Project. Journal of Teacher Education, 63(4), 275–285. Gelmon, S. & Billig, S. (2007). Service Learning: From Passion to Objectivity: International and Cross-disciplinary Perspectives on Service Learning Research. Charlotte, North Carolina: Information Age Publishing. George, B. P. & Sankaranarayanan, K. G. (2007). Participation of in-service teacher participants and student–teacher interaction in the regular classrooms: A study conducted in India. Journal of In-service Education, 33(3), 377–379. Ghosh, S. C. (2000). The History of Education in Modern India: 1757–1998. Delhi: Orient Longman. Giffard-Lindsay, K. (2007). Inclusive Education in India: Interpretation, Implementation, and Issues (Research Monograph Number 15). Brighton: Centre for International Education, University of Sussex School of Education. Gitanjali, S. (2004). A comparative study of the personality characteristics of primary school students with learning disabilities and their non-learning disabled peers. Learning Disability Quarterly, 27(3), 127–140. Government of India (1949). The Constitution of India. New Delhi: Ministry of Law and Justice. Govinda, R. & Bandyopadhyay, M. (2010). Social exclusion and school participation in India. Prospects, 40(3), 337–354. Haridarshan, P. (2015). The impact of differing maternal expectations on the academic achievements of primary school children in urban Bangalore, South: A comparison between boys and girls. Support for Learning, 30(3), 192–204. Hegarty, S. & Alur, M. (2002). Education and Children with Special Needs. New Delhi: Sage. Inclusion International (April 1996). Inclusion: News from Inclusion International. Brussels: Inclusion International. Jha, M. M. (2010). From Special to Inclusive Education in India: Case Studies of Three Schools in Delhi. Delhi: Pearson. Juneja, N. (2015). Constitutional mandate for free and compulsory education: New light on the intention of ‘The Founding Fathers’. Contemporary Education Dialogue, 12(2), 208–237.

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Kaikkonen, L. (2010). Promoting teacher development for diversity. In R. Rose (Ed.), Confronting Obstacles to Inclusion: International Responses to Developing Inclusive Education. London: Routledge. Kourkoutas, E., Vitalaki, E., & Fowler, A. (2015). Resilience based inclusive models for students with social-emotional and behavioural difficulties or disabilities. In E. Kourkoutas & A. Hart (Eds.), Innovative Practices for Children and Adolescents with Psychosocial Difficulties and Disabilities (pp. 8–45). Cambridge: Scholar Publications. Kumar, K. (2014). Indian Constitution: The vision of B. R. Ambedkar. Journal of Humanities and Social Science, 19(3), 29–36. Kuppusamy, B., Narayan, J., & Nair, D. (2012). Awareness among family members of children with intellectual disability on relevant legislations in India. Disability, CBR and Inclusive Development, 23(1), 92–99. Le Fanu, G. (2013). Reconceptualising inclusive education in international development. In L. Tikly & A. Barrett (Eds.), Education Quality and Social Justice in the Global South. London: Routledge. Mahmood, S. & Visser, J. (2015). Adopted children: A question of identity. Support for Learning, 30(3), 268–285. Mander, H. (2015). Looking Away: Inequality, Prejudice and Indifference in New India. New Delhi: Speaking Tiger. Mehrotra, S. (2006). Reforming elementary education in India: A menu of options. International Journal of Educational Development, 26(3), 261–277. Miles, M. (1997). Disabled learners in South Asia: Lessons from the past for educational exporters. International Journal of Disability, Development and Education, 44(2), 97–104. Ministry of Human Resource Development (1987). Project for Integrated Education for the Disabled (PIED). New Delhi: Government of India. Ministry of Human Resource Development (1994). District Primary Education Programme. New Delhi: Government of India. Ministry of Human Resource Development (2009). Right of Children to Free and Compulsory Education Act (RTE). New Delhi: Government of India. Ministry of Human Resource Development (2014). National Achievement Survey, Summary of Key Findings, Class III (Cycle 3). 2012–13. New Delhi: Government of India. Ministry of Social Justice and Empowerment (1995). The Person with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act. New Delhi: Government of India. Ministry of Welfare (1974). Integrated Education of Disabled Children (IEDC). New Delhi: Government of India. Pandey, S. (2006). Para-teacher scheme and quality education for all in India: Policy perspectives and challenges for school effectiveness. Journal of Education for Teaching, 32(3), 319–334. Parasuram, K. (2006). Variables that affect teachers’ attitudes towards disability and inclusive education in Mumbai, India. Disability and Society, 21(3), 231–242. Philip, N. (2015). Culture and poverty: A case study of a girl with special educational needs from a poor community in South India. Support for Learning, 30(3), 205–222. Rai, A. (2014). Implementation of the RTE Act: RTE Forum’s Stocktaking Report. Social Change, 44(3), 439–449. Rane, A. (1983). An Evaluation of the Scheme of Integrated Education for Handicapped Children Based on a Study of the Working of Scheme in Maharashtra. Bombay : Unit for Child and Youth Research, Tata Institute of Social Sciences.

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Rose, R., Doveston, M., Rajanahally, J., & Jament, J. (2014). What is effective inclusion? Interpreting and evaluating a western concept in an Indian context. In C. Forlin & T. Loreman (Eds.), Measuring Inclusive Education (pp. 37–51). London: Emerald. Ruffina, D. & Ahmed Bawa, K. (2012). Social inclusion: Teachers as facilitators in peer acceptance of students with disabilities in regular classrooms in Tamil Nadu, India. International Journal of Special Education, 27(2), 157–168. Salend, S. (2010). Evaluating inclusive teacher education programs: A flexible framework. In C. Forlin (Ed.), Teacher Education for Inclusion: Changing Paradigms and Innovative Approaches. London: Routledge. Saravanabhavan, S. & Saravanabhavan, R. C. (2010). Knowledge of learning disability among pre and in-service teachers in India. International Journal of Special Education, 25(3), 132–138. Savolainen, H., Engelbrecht, P., Nel, M., & Malinena, O. (2012). Understanding teachers’ attitudes and self-efficacy in inclusive education: Implications for pre-service and inservice teacher education. European Journal of Special Needs Education, 27(1), 51–68. Sharma, M. (2015). Ambedkar’s struggle for empowerment of the downtrodden. International Journal of Research in Economics and Social Sciences, 5(6), 251–257. Sharma, U. & Deppeler, J. (2005). Integrated education in India: Challenges and prospects. Disability Studies Quarterly, 25(1). Sharma, U., Morre, D., & Sonawane, S. (2009). Attitudes and concerns of pre-service teachers regarding inclusion of students with disabilities into regular schools in Pune, India. Asia Pacific Journal of Teacher Education, 37(3), 219–331. Singal, N. (2010). Including children with special needs in the Indian education system. In R. Rose (Ed.), Confronting Obstacles to Inclusion: International Responses to Developing Inclusive Education. London: Routledge. Soni, R. B. L. & Rahman, A. (2013). Status of Implementation of RTE Act 2009 in the Context of Disadvantaged Children at the Elementary Stage. New Delhi: National Council of Educational Research and Training. Thirumurthy, V. & Jayaraman, B. (2007). Special education in India at the crossroads. Childhood Education, 83(6), 380–384. United Nations Educational, Scientific and Cultural Organization (2015). EFA Global Monitoring Report. Education for All 2000–2015: Achievements and Challenges. Paris: UNESCO. Unnikrishnan, P. (2010). Inclusive education in India: Challenges and implications for persons with special needs. Educational Quest, 1(1), 21–25. Vellal, S. (2015). Using cue-pause-point technique to support the communication of an adolescent on the autism spectrum with echolalia. Good Autism Practice, 16(2), 33–39. Waitoller, F. R. & Artiles, A. (2013). A decade of professional development research for inclusive education: A critical review and notes for a research program. Review of Educational Research, 83(3), 319–356.

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The Practice Architectures of Inclusive Education in Two African Contexts Anbanithi Muthukrishna (University of KwaZulu-Natal, South Africa)

Introduction Inclusive education has been a significant issue in educational discourse in the Global South over the past three decades or so. Most countries in the South have signed and ratified key international instruments, including the World Declaration on Education for All (UNESCO, 1990), the African Charter on the Rights and Welfare of the Child (OAU, 1990), the Salamanca Statement and Framework for Action on Special Needs Education (UNESCO, 1994), The Dakar Framework for Action (UNESCO, 2000), the Millennium Development Goals (MDGs) (United Nations, 2000), the EFA Flagship on Education and Disability (UNESCO, 2003), and the Convention on the Rights of Persons with Disabilities (United Nations, 2006). These instruments promoted international commitment to creating inclusive education systems, addressing the pervasive cycles of exclusion from education, and meeting the targets of access to education and meaningful participation for all. Furthermore, they underlined Education for All as an inclusive concept and recognized it as part of the human rights agenda, with the mandate that all learners have a right to quality and equitable education. Within the African context, education policy debates related to inclusion and exclusion in education have gained ground and intensified since the 1990s. Many countries have included the principles and values embedded in international instruments in their local constitutional provisions and in social and education policies. For example, the South African Constitution of 1996, Section 29, states that ‘everyone has the right to a basic education, including adult basic education’. Its Bill of Rights entrenches the rights of all South Africans, regardless of race, gender, sexual orientation, disability, religion, culture or language, to basic education and access to educational institutions. While the Education White Paper 6: Special Education – Building an Inclusive Education and Training System (Department of Education, 2001) stresses that an inclusive system is about acknowledging that all children and youth can learn and that all children and youth need support. Inclusive education is about creating enabling education structures, systems and learning methodologies to meet the needs of all learners and respecting differences in learners.

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In Namibia, the National Disability Policy (Republic of Namibia, 1997), aimed to specifically address the needs of persons with disabilities, declares that ‘all persons shall be equal before the law’ and ‘no person may be discriminated against on the grounds of sex, race, colour, ethnic origin, creed or social or economic status’ (Republic of Namibia, 1997, p. 3). In 1993, the Ministry of Education and Culture released a policy document titled ‘Towards Education for All’, in which four major goals on which the Namibian education system was to be based were outlined: access, democracy, quality and equity (Republic of Namibia, 1993). In this document the government promises equal educational opportunities to all residents in Namibia. The Sector Policy on Inclusive Education (Republic of Namibia, Ministry of Education, 2013) aims to provide access, equity and quality education to all children. The policy seeks to ensure that the education system becomes responsive to the needs of all children. However, it has a particular focus on children and young people who have been and are marginalized within the education system. The policy further states that inclusive education should be perceived as an educational approach that seeks to assure wider access to education by enhancing the quality of education and diversifying educational practice. In recent decades, there has been an emerging body of research emanating from the African context focusing on the theoretical, conceptual and philosophical perspectives of inclusive education, as well as discussions on the possibilities, limits and struggles of building inclusive schools and communities in the pursuit of equity and the right to quality education (e.g. Engelbrecht, Nel, Smit, & van Deventer, 2016; Mukhopadhyay, Okechukwu, & Abosi, 2012; Muthukrishna, Morojele, Naidoo, & Damant, 2016; Nketsia, Saloviita, & Gyimah, 2016; Phasha, Mahlo, George, & Sefa Dei, 2017; Singal & Muthukrishna, 2016; Tchombe, 2017; Walton, 2016). In reviewing current research in the Global South, there are calls for further work providing a more nuanced, contextual and grounded understanding of inclusive education practices (Le Fanu, 2013; Maudslay, 2014). Phasha, Mahlo, George, and Sefa Dei (2017) suggest the need for research that theorizes the diverse epistemologies and perspectives, and the specific challenges and strengths of inclusive schooling in local African contexts. This chapter presents the findings from a study undertaken in two African country contexts, Namibia and South Africa. This project sought to obtain a contextual, situated understanding of the practice of inclusive education.

Theoretical framing of the study In this chapter, the theory of practice architectures (Kemmis & Grootenboer, 2008; Mahon, Kemmis, & Francisco, 2017) is drawn on to explain how social and educational practices are established in relation to the particular cultural-discursive, materialeconomic and social-political arrangements that shape them. Through the theory, Mahon, Kemmis, and Francisco (2017), among others, seek to theorize practice. The theory is breaking new ground in conceptualizing and locating educational practices in the historical, political, social and material conditions that relate to particular educational sites. In reference to schooling contexts, Carr and Kemmis (1986), cited in Aspors (2012, p. 2), define practice as ‘what teachers do in meeting the tasks and

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demands confronting them in their everyday work’. Aspfors (2012, p. 36) refers to practice as the ‘performing or exercising of a profession’ and further explains that ‘in practice’ is ‘the site or place where people meet, act and interact with one another’. The argument can be taken further that the performances or actions shape a direction for practice and nurture a teacher. Kemmis and Grootenboer (2008) contend that practices are embedded in practice architectures. Practice architectures comprise three overlapping and intersecting spaces: 1. semantic space (sayings) 2. the physical space-time (doings) 3. the social space (relatings)

First, practice architectures give teaching practices meaning through the ‘sayings’ and ‘thinkings’ in the medium of language. This semantic space includes the language, metaphors, expressions, conceptualizations and concepts that teachers use to describe or articulate what happens in their practice. Teachers gain this knowledge through social, political and pedagogical discourses in and through teacher development programmes, international literature, policy documents, organizations such as disability associations, teacher unions. Thus, this is an important space to examine, and it is critical to understand that there may be different conceptualizations, understandings and thinking in different contexts and sites. Secondly, practice architectures enable one to examine the ‘doings’, for example, actions taken in building inclusive schools and classrooms. It is about the different ways of doing or performing activities within a given space of time. The ‘doings’ are shaped by material-economic circumstances and practical arrangements that impact a site, such as physical and economic conditions. For example, teachers may cite the curriculum as too complex to complete in the academic year, hence, there is inadequate time to be responsive to learners who have diverse support needs. Finally, practice architectures enable an examination of the connectedness of the participants through the ‘relatings’ aspect. Aspfors (2012) explains that practices are social by nature as they often involve power-laden relationships between various role players, for example, government, school management, teachers, learners and parents. The three spaces set out in the theory of practice architectures often overlap, encompassing the design of a particular aspect in a site, for example, inclusive education practice. In examining the semantic, physical and social spaces, it is also important to explore the ‘site ontologies’ (Aspfors, 2012, p. 39) – the existing external culturaldiscursive, material-economic and social-political arrangements. Kemmis (2008) argues these dynamics mediate (‘mediating preconditions’) the site, constraining or supporting practice. Furthermore, given that practices are dynamic one should be careful to allow for contradictions and ambiguities. This chapter will examine inclusive education practices in the two country contexts through the lens of practice architectures. The chapter proposes that the theory can help uncover and make explicit the complex ways in which teachers enact and perform IE practices in schooling contexts. It can uncover the theoretical frameworks or lenses,

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assumptions, motivations and beliefs that underlie practice and the influences that drive practice (Salamon, Sumsion, Press, & Harrison, 2016). Questions that are explored are as follows: ●

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What are the ways in which the arrangements and ‘happenings’ in the intersecting semantic, physical and social spaces shape inclusive education practice at the particular educational sites? How do these arrangements and ‘happenings’ enable, support and limit inclusive education practice?

Research contexts The history of Namibia and South Africa reflect intersecting influences of Western imperialism and colonialism, and apartheid legislation and policies. In 1920, the League of Nations proclaimed South West Africa (Namibia today) a mandated territory to be administered under South African law. South African apartheid laws were extended to Namibia depriving black Namibians of any social and political rights, and entrenching segregation and discrimination based in the main on race and ethnicity. Prior to independence there were several parallel education systems defined mainly by race and ethnicity which privileged the dominant group. There were huge disparities in access to education and the quality of education across groups (MietAfrica, 2013). Today, both countries continue to experience the legacies of colonialism and apartheid. Furthermore, the life conditions of citizens are impacted by neoliberal ideology, capitalism and globalization. These dominant structures or systems of oppression erode civic life and the achievement of genuine democracy, by reinforcing social inequalities and neglecting social justice and equity agendas enshrined in current legislation and policy. The reduction of poverty and inequality remains a central challenge and priority since independence. Inequality and poverty endangers the imperative of building inclusive schools and communities and democracy in society. Influenced by Western paradigms and models, in both countries special education was a segregated second system set apart from regular education, and learners categorized as having ‘special needs’ were placed in segregated settings and institutions. In a broad sense, Namibia and South Africa have traversed through various phases of education for learners categorized as having ‘special educational needs’ influenced largely by colonialism and education policies and provision in countries of the North. There has been the phase of exclusion of learners with disabilities from education; then came the establishment of segregated education, largely based on the charity, individual deficit, medical and intellectual diagnosis and treatment models. The next phase was marked by a move to the growth of state provision and the philosophy of integration. Then came the Education for All debates as a political strategy that focused on access and quality education for all learners. In respect to learners categorized as having ‘special educational needs’, the debates largely focused on placement of learners rather than on quality education and equity. Over the past three decades or so, Namibia and

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South Africa have engaged with the international agenda towards creating inclusive education systems. This is evident in legislation and policies that have emerged in the two countries. In South Africa, Education White Paper 6: Special Education – Building an Inclusive Education and Training System (Republic of South Africa, Department of Education, 2001) provides a framework for developing an inclusive education system through systemic change. In Namibia, the National Policy Options for Educationally Marginalised Children (Republic of Namibia, 2000) foregrounds the imperative of inclusive education. The policy options widened the concept of inclusive education to include all learners who are at risk of not accessing education, including children living on the streets, those who become parents prematurely, those affected by abject poverty and HIV and AIDS, those living in informal settlements, those who are orphans and/or vulnerable children, and those who live in remote rural areas with limited educational stimulation and resources. The Ministry of Education’s Sector Policy on Inclusive Education (Republic of Namibia, 2013) identified key strategies for implementation that include: integrating the Sector Policy on Inclusive Education into all legal and policy frameworks, raising awareness of the right to education for all and fostering attitudinal change, and reviewing the curriculum to be responsive to the diversity of learning needs. In both Namibia and South Africa, the inclusive education agenda is located in human rights discourses. Policies and legislation that have emerged do not construct inclusion as solely a disability issue but rather as a concern that seeks to address the diversity and support needs of learners, providing quality education to all. Furthermore, it is not merely about assimilation of diverse learners into untransformed schools and their classrooms but involves systemic change throughout the education system. Overall, debates in the Global North have shaped the way in which inclusive education has been enacted in Namibia and South Africa. As in other countries of the Global South, inclusive education projects undertaken with funding from international donor organizations has led to the transfer of knowledge in reductionist ways. These initiatives have largely ignored historical and contextual realities of countries, the pernicious impact of the intersecting processes of colonialism, capitalism and globalization, and the resulting complex structural inequalities that continue to reinforce oppression (cf. Singal & Muthukrishna, 2014).

Research methodology and design The research project involved qualitative case studies undertaken in selected schools in Namibia and South Africa. The aim was to understand how teachers, in particular, enact inclusive, democratic school policies, enabling structures, cultures and pedagogies to meet the needs of diverse learners. Furthermore, examining how context shapes policy enactments was key to the study. In South Africa two rural, primary schools situated approximately 30 kilometres from the city of Durban participated in the study. One of the primary schools was designated as a Full Service School (FSS), a district support structure proposed in

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Education White Paper 6. An FSS admits learners who require moderate levels of support. The third education institution was a Special School designated as a Resource Centre (SSRC) to mainstream schools in the district, in accordance with policy proposals in Education White Paper 6. (Republic of South Africa, July 2001). An SSRC provides on-site support for learners with high-level learning needs, as well as support to neighbouring schools and communities. The SSRC is a residential special school that caters for learners with physical disabilities and visual disabilities, from preschool to grade 7. At the end of grade 7, learners seek admission to other special schools or to mainstream schools. Government commitment gives FSS and SSRC slightly higher resourcing and staffing than mainstream schools enabling them to serve as support structures to mainstream schools. Two Namibian schools, one primary (grades 1 to 6) and one junior secondary school (grades 7 to 10) participated in the study. These schools are located in the Hardap region, about 90 kilometres from Windhoek, the capital city of Namibia; and the Erongo regions, approximately 200 kilometres from the capital, respectively. The schools were selected as their locations were easily accessible to the researchers. Participants in both contexts included teachers, school principals, School Management Teams (SMTs), learners, therapists and parents. Multiple data generation methods were used within each country case study, and these included individual interviews, questionnaires, observations, focus group interviews, photo-voice and document analysis.

Discussion of findings The analysis of data and the discussion of findings focus on the unique ‘sayings’, ‘doings’ and ‘relatings’ of inclusive education practice within the two country sites. These dimensions of practice occur within particular ‘site ontologies’ that may enable or constrain inclusive education practice (Mahon, Kemmis, Francisco, & Lloyd, 2017). The theory of practice architectures examines what comprises particular practices, what shapes them and how do the practices shape the happenings in the site in which they are located.

The ‘sayings’ of inclusive education practice The semantic space of inclusive education is about the meanings and understandings embedded in concepts and language used in inclusive education practices. Aspfors (2012, p. 43) asserts that it is important to look at which ‘language game’ influences participants in their enactments of different aspects of practice. The question explored here is What are the particular patterns of ‘sayings’ in different settings? The findings in this study show that conceptualizations and understandings of IE are wide ranging, varied and at times contradictory within and across the two country contexts and sites, and embedded in these are particular attitudes, ideologies, beliefs and values. Exclusionary and inclusionary language and conceptualizations of inclusion seem to operate side by side.

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In South Africa, the meanings of inclusion reflected largely humanistic cultural and religious values and ideals, for example, Ubuntu (a Southern African humanistic worldview), Hindu and Christian values. A member of the School Management Team (SMT) at the SSRC explained: I went to Mission of the Internal Religion … that taught us Hindu values …. it taught you respect, it taught you about how to approach people, it taught you about what is your purpose in life. Again, it’s based … it’s based on your human values.

The rights agenda in legislation and policy was evident, but did not come through strongly. In line with policy, there was an understanding among participants that inclusion is wider than a focus on just disability issues. It is about equal access and participation for all learners. Inclusion was viewed as a process to address barriers to learning and to accommodate the diverse learning needs. A teacher at the FSS in South Africa stated: ‘Inclusion is about accommodating different challenges, skills, knowledge, values and attitudes’. In the Namibian schooling sites emphasis was placed on creating a caring culture, positive attitudes and respect for diversity in the learner population. A member of the school management stated the imperative for all staff members to ‘inculcate and model a caring culture towards all learners’. A common theme, in this school, was that all learners are valued in an inclusive system. An important goal for the Hardop region primary school was enabling access to education, for example, for children of marginalized groups in the Rehoboth district. In the narratives of participants, there was evidence of a deviation from a rightsbased, inclusive agenda in the semantic spaces analysed across all the educational sites. For example, concepts or labels such as ‘slow learners’, the notions of a ‘special class’ and ‘special class teacher’, ‘learners with special needs’, ‘learners with barriers to learning’, ‘learners with learning difficulties’, ‘remedial learners’, ‘learners with diverse needs’, ‘normal vs disabled learners’, ‘learners with psychological barriers’ surfaced during the research, indicating that ‘special education’ ideologies, medical and deficit discourses operate alongside inclusion discourses. Such narratives and the language embedded in them must be seen in the context of the history of the two countries, impacted by colonialism and Western conceptualizations and models of diversity in education. Well-intentioned actions seen by participants as a commitment to inclusive education policy have resulted in exclusionary educational discourse within the schooling contexts. However, in acknowledging what influences shape the semantic spaces, it must also be conceded that this kind of language is pervasive perpetuating the labelling of certain individuals and creates binaries of ‘normal’ and ‘other’ (Walton, 2016). Language can serve to reinforce negative constructions of learners who have support needs that deviate from the norm and overtones of traditional Western special education. There was a commitment in the narratives of participants to ‘accommodate’ diversity in the learner population, responding to particular ‘learners who experience barriers to learning’ and ‘helping learners catch up’. In both country contexts, remedial classes and special classes were set up ‘for failures’, ‘learners with learning difficulties’ and learners with limited English Language proficiency. According to school management and

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teachers in both country contexts, the motivation was to ensure quality education and equity in education provision for learners experiencing barriers to learning. These initiatives reflect the agency of school management and teachers in contexts with a lack of resources, large class size, and demonstrate use of limited human resources such as teacher assistants. In the understandings of the participants, these initiatives were in line with their goal to ensure curriculum access to all learners. The initiatives were based on the participant’s interpretation of systemic change and transformation of the schooling sites to enable equitable participation of all learners. Ball, Maguire, Braun and Hoskins (2011) remind us that as actors of policy, teachers find spaces to perform their agency as they select, interpret and adapt policy to align with their shifting beliefs. From a rights perspective, such actions would be viewed as merely assimilation into an untransformed uncontested systems. Walton (2016, p. 76) warns that in such enactments ‘the system does not change, it is just rearranged’, and that the lens is on individual learners and the deficits they have in terms of different learning needs. Furthermore, the danger of ‘othering’ and ‘marking’ certain groups of learners as different and sustaining oppression is inherent in such actions. Members of school management at the Hardop region school in Namibia voiced their concern with regard to sustainability of such inclusive education initiatives due to lack of financial, material and human resources. A similar concern was raised by the staff at the full-service school in the South African context. Kemmis (2008), in contrast, warns against thinking that there is a right conceptualization or correct language of inclusion and inclusive education. One has to acknowledge that there may be varied ways of understanding and conceptualizing inclusive education depending on the context, and which language game from which agenda influences teachers in a particular context. Kemmis (2008) argues that the language and concepts are located in a particular time and social reality. In the two country contexts, it would seem that enactments are shaped by the complex intersecting influences from traditional Western frameworks of special education which are difficult to disrupt, global universal perspectives on inclusive education and local policy contexts. The key question that emerges is: how can professional development programmes be designed to enable school communities to make the ideological shift to a rightsbased, socially just and equity-focused inclusive education language and policy implementation agenda, and disrupt frameworks from traditional special education agendas? It is argued that drawing on the conceptual framework of social justice education has value (Adams, Bell, & Griffin 1997; Adams, Bell, Goodan, & Joshi, 2016) – a social justice framework aligns with an equity focused approach to education and human rights agenda. From this perspective, teachers and other school actors would understand that inclusive education is about challenging the ways in which education systems often work to reproduce and perpetuate inequalities and oppression which play out in the form of discrimination, prejudice, marginalization, stigma, segregation and exclusion. A social justice framework engages teachers in reflexively critiquing their personal perceptions, assumptions and reasoning about what constitutes inclusive language and practices in schooling contexts. In other words, the goal of a social justice framework is to develop a critical consciousness in members of the school community

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to question, analyse, and challenge oppressive practices, and the power-laden social and political influences that shape and sustain oppression in the education system. A social justice framework would suggest that language is political and ideological, and that teachers and other school personnel would need to constantly interrogate language of inclusion/exclusion to ensure that it is not entrenching further oppressions. In the study, the theory of practice architectures helped to illuminate particular patterns of ‘sayings’ in different contexts. Analysis of the semantic space provides insight into how inclusive education is constructed, and the underlying ideologies and discourses that inform how it plays out in practice. Such information is significant as language and discourse shape practices in schooling contexts. Walton (2016, p. 161) calls for an ‘ongoing and critical engagement with the language which enables, buttresses, and conceals exclusion, even disguised as the language of inclusive education’. Furthermore, underlining a ‘critical alertness’ to or ‘critical consciousness’ about what identities and practices the language we use reinforces (Walton, 2016). Here, it is argued that the agenda of inclusive education needs to be strengthened and complemented with insights on the social construction of oppression in schooling contexts.

Performing inclusive education Inclusive education as a concept and policy agenda is complex and often contested (Armstrong, Armstrong, & Spandagou, 2011; Kalyanpur, 2011). Therefore, it has been conceptualized, interpreted and enacted within and across schooling contexts in a range of ways. Data from the study revealed that how inclusive education is practiced depends on which cultural-discursive, material-economic and social-political arrangements and influences intersect in particular contexts and educational spaces. In this sub-section, the question explored is: what are the actions and activities evident in the educational sites as participants perform inclusive education practice? Here the ‘doings’ of inclusive education practice and the role of context in shaping the ‘doings’ are examined. In Namibia at the two schooling sites, access to education, participation, and the promotion of the health and well-being of vulnerable learners appeared to be the key goals. It is likely that the National Policy Options for Educationally Marginalised Children (Republic of Namibia, 2000) is a key instrument that influences inclusive education practice at the schooling sites in the study. The school management of the primary school listed the following indicators of inclusion at the school: access to education for children of remote, marginalized groups in Rehoboth (a town located 90 kilometres south of the capital), the commitment to quality education for learners with ‘special educational needs’, establishment of a nutrition programme with the help of the community, caring teachers, granting fee exemptions to learners from poor socioeconomic backgrounds, ensuring that life skills teachers are always available to respond to learners needs, a concerted drive to address learner absenteeism, collaborating with various agencies to support learning and extramural programmes.

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At the junior secondary primary school, school dropout as a result of teenage pregnancy, poverty and school and disaffection is a major concern for school management and staff. The school is committed to implementing the Teenage Pregnancy Prevention and Management Policy (Republic of Namibia, 2012) which makes provision for learners who are pregnant to remain in school until they are close to their delivery dates, and return to school as soon as possible after the birth. Unfortunately, systemic exclusionary factors such as poverty, lack of support and limited resources continue to impact school dropout. At the primary school, teachers and school management have engaged with the issue of creating an inclusive curriculum to meet the support needs of learners experiencing difficulties in learning. Two initiatives were foregrounded: remedial classes for learners who have limited English language proficiency (English is the medium of instruction at the school) and the establishment of a special class for eight learners categorized as having ‘learning difficulties’, intellectual impairment, physical disability and ‘learning disabilities’. Teachers indicated that on reflection both initiatives led to further exclusions and tensions. Learners who needed the support provided by the remedial initiative, offered outside the curriculum, could not sustain their commitment as they had long distances to travel to their homes. In respect of the segregated special class, teachers made the decision to discontinue the class after much reflexive engagement. The school principals explained, We had a special class here with eight learners. Their needs varied from learning difficulties, intellectual impairment, physical disability combined with learning disabilities. They were giving teachers a tough time. One of them chased a teacher around with a pair of scissors. One teacher asked for relocation (to another school) and another landed in hospital. Then we decided to do away with the special class and included the learners into age-appropriate classes and that was the best decision ever! (Namibia, Principal, Primary school)

The staff at the school learnt through their experiences that the segregation of learners with diverse needs in a class of their own created other tensions which defeated the initial purpose of the initiative – that is, ‘providing an opportunity for the learners to learn at their own pace, free from intimidation from typically developing children’ (Teacher). They also conceded that the initiative undermined the goal of presence, participation, curriculum access and achievement to which they were committed. The teachers narrated how the eight learners who were transferred to regular classes were making good progress emotionally, socially and academically. The idea of providing remedial classes for children with limited language proficiency and segregated special class was well intentioned by staff at the school though may be deemed contrary to the principle of equitable and socially just access and participation. Interestingly, the establishment of remedial units in the context of inclusive education was also a happening at the Full-Service School in South Africa. These responses were without doubt shaped by contextual influences such as limited professional development in the area of inclusive education policy and practice and limited human, material and financial resources. It does seem that from the perspective of both school management and teachers, such enactments of inclusive education are

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contextual responses to the diverse support needs of learners and, in their thinking, are underpinned by an agenda of fairness and equity. Kemmis and Grootenboer (2008, p. 3) argue practice is always located in time and space, and they emerge and evolve in particular ‘site ontologies’. At the SSRC despite the fact that staff and management are clearly committed to quality education for all their students as evidenced by lesson observations, exclusionary practices were evident. For example, the school has an admission policy to only admit learners who are ‘educable’ – determined by psychological assessments. Such an exclusionary practice again is shaped by models of special education and a specialized model of support from the Global North which continue to operate despite the emphasis in current South African policies that psychological assessments may be applied in the admission process only if they enhance the understanding of the learner’s support needs. Such assessments cannot be used to exclude learners from access to a schooling context (Republic of South Africa, Department of Basic Education, 2014). That oppressive school-based policies can be applied in contravention of Education White Paper 6 highlights a lack of monitoring mechanisms in place to address exclusionary practices. A positive aspect among the schools was evidence of reflexivity and teacher agency to initiate change and openness to continuous learning. Teachers and SMTs were able to reflexively question their values, beliefs, thought processes, assumptions and enactments. Professional development programmes need to harness this kind of agency and engage teachers and school leaders in critical ways to reflect on whether practices often deemed neutral and benevolent may in fact reinforce oppressions. This chapter argues that schools need to employ a social justice framework to enable an understanding that actions taken in the name of inclusive education can perpetuate oppressions. This would help highlight how disadvantage (or marginalization) happens even in well-intentioned policy enactments. Reygan and Steyn (2016) would argue that school community must have the knowledge and skills to ‘read practice’ through a critical diversity literacy (CDL) lens. A CDL framework helps teachers to identify and examine oppressive practices, and interrogate how power creates systems of privilege, advantage, disadvantage, marginalization and oppression. In South Africa, teachers and school management at the SSRC and the Full-Service School stated that one of the limitations of the South African inclusive education policy proposals is that there is a gap between policy agendas and practical realities in schools. The schools have extremely limited human, material and resource capacity to serve as support structures to neighbouring schools and at the same time be responsive to their own learner and teacher support needs. Despite these constraints, the SSRC is committed to quality education for their learners. Lesson observations indicated high-quality teaching and learning taking place at the school, and a commitment to maximize participation of all learners. The school is adhering closely to the mainstream curriculum for learners on an academic programme. Our inclusive philosophy is: we are going to give our learners the best possible education whether you have a textbook or not in Braille. We will be able to make plans and try our best but we are not going to sit and wait. (South Africa, Principal, SSRC)

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The principal explained that a major barrier to quality education for learners with visual disabilities is a shortage of braillers at the school. A key policy imperative is that schools need to adopt inclusive curriculums, however, in reality the lack of necessary assistive devices directly violates of the right of the learners to access the curriculum. Despite the lack of funding, teachers at the SSRC were open to supporting neighbouring schools and indicated that historically they have done so to some extent. Because of IE, they (regular schools) end up with disabled children, but they don’t know how to assist them. So they will come to us for advice. (South Africa, Teacher, SSRC) When this whole thing was started, they used to come and take our teachers and go to mainstream schools, to address the teachers there and to assist. The teachers from there, they still come and visit, and will sit for the whole day and observe what we do. (South Africa, Teacher, SSRC)

From observations, individual interviews and focus group interviews, the study revealed that the Full-Service School (FSS) had an ethos that is welcoming, affirms diversity and recognizes learner potential. Although educator practices may not always be coherent, the school is working to instil an inclusive philosophy. There is a strong sense that educators are proud of their school and are embracing change. There is emerging leadership at various levels in the school (including the principal and management team, the School Based Support Team, teachers) to foster and enhance inclusive practices. Although there are serious funding constraints, the FSS is navigating the goal of providing support to neighbouring schools. The principals do come here. Maybe a principal will come with one or two cases from the school asking, ‘How do we deal with the learner who is this, this or this?’ For example, in the case of a learner who is vulnerable, who has been abused at home, the principal wants to know exactly how to deal with that one. Then we advise him to fill out Form 22. Form 22 is where you start when a child is being abused. We fill out the form and we take the matter up with the police. (South Africa, Principal, FSS)

A few critical key issues emerge from the above inclusive education policy enactments. First, school management and staff at the various schooling sites work within unique social realities and are able to identify their own contextual priorities in building inclusive schools. As Singal and Muthukrishna (2014) have argued, the simplistic rather technical use of development materials, toolkits, checklists and indexes of effective inclusive schools developed by Northern-based academics and prescribed by international organizations in both South Africa and Namibia have little contextual relevance given the realities and priorities of schools and their communities. In the majority of the schooling sites, presence and acceptance (Humphrey, 2008) of learners were the key goals. The schools and community are making all possible efforts

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to admit all children, give them access to education and have put in place initiatives to ensure that the most marginalized remain in school including children in poverty, children with disabilities and children from previously marginalized communities in Namibia. However, quality participation and high-achievement outcomes are still a struggle in the regular schools, as is the case with education in South Africa and Namibia as a whole. This is evident in the results of the Southern and Eastern Africa Consortium for Monitoring Educational Quality (SACMEQ) 1111 survey undertaken in the final quarter of 2007. The survey yielded data on the performance of representative sample of Grade 6 students’ academic ability in reading and maths in fifteen southern African countries. South Africa and Namibia performed below the average score in maths and reading. In South Africa, 27 per cent of the students were found to be functionally illiterate and 40 per cent functionally innumerate. In Namibia, 14 per cent of students were found to be functionally illiterate and 48 per cent functionally innumerate (Spaull, 2012). In South Africa results showed that the poorest 20 per cent of learners performed far lower than their peers in other African countries. Limited human, material and resource capacity, as well as inadequate professional development for school management and teachers, continue to impact the goal of quality education for all. Currently, inclusive education practices are occurring within untransformed educational systems and are often shaped by systemic socio-political dynamics that constrain practices. Learners continue to be excluded from quality education in both country contexts due to various systemic barriers. In South Africa, for example, a critical issue is that teacher professional development programmes historically have been beset with challenges such as questionable quality, inequality, fragmentation, poor use of resources and lack of relevance (Kamanga, 2013). At one of the Namibian schools, the head of department voiced the concern that poverty was key reason for school dropout. There needs to be a radical reconstruction of education systems, schools and schooling to achieve access and quality education for all learners. The key issue is that this kind of change must be wide-ranging, reflecting strong political will and commitment to the policy imperatives of inclusive, human rights and social justice agendas. Radical transformation needs to happen in all government sectors at all levels, including Education, Finance, Health, Social Welfare, etc. It cannot happen within the limits of the current system. This means confronting the hegemonic neoliberal globalizing agenda that entrenches poverty and inequality in most African contexts.

The social spaces of inclusive education Practices are social in nature as teachers, school principals, learners, politicians, education department officials relate to one another in unique ways. In a school that is implementing inclusive education policy, the social space is constituted from within and across schools as well as outside schools. In the language of practice architectures, these interactions are referred to as ‘relatings’. Power dynamics are often embedded in the ‘relatings’. The question explored, here, is: what are the distinctive arrangements

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of relationships in the schooling sites in the process of inclusive education practice? Relationships may be symmetrical or asymmetrical, according to Aspfors (2012). Symmetrical relationships reflect a connectedness, solidarity, reciprocity, shared goals and dynamic interactions that are generally democratic in nature (Kemmis & Grootenboer, 2008). Asymmetrical relationships reflect an imbalance of power located in particular social and political situations. In the case of the two country contexts, it was possible to gain insight into the ‘relatings’ of inclusive education practice. At the primary school in South Africa, a key goal is to contribute towards poverty alleviation in the community. School management and teachers consider their institution as a caring, health-promoting school where learners are respected and valued. The school ethos and atmosphere reflect a culture of nurturing and respect for all, including families, parents, caregivers and community members. A gardening project was initiated and is being sustained through partnerships with farmers and the business sector in the area. This initiative has become a powerful source of income for the school as funds are used to enhance the quality of learning and teaching. Fresh vegetables raise the nutritional quality of the school feeding scheme and are also supplied to poor families in the area. Because of these innovations, the school has won numerous regional and national awards. At both the Full-Service School and the SSRC there is growing solidarity among staff, and there are examples of self-initiated staff development programmes. The driving structure in these initiatives is the School Support Team proposed in Education White Paper 6. The support structure at the SSRC enable the staff to work as a strong team and operate in a rigorous, evidence-based and reflexive way. The agency, solidarity and connectedness among teachers at the Full-Service School is reflected in the focus group interview below; when questioned about who ‘takes the lead’ in staff development, one of the teachers explained: Anyone among us who has the knowledge and perception as well the teachers who are not part of the School Management Team. If an educator has the knowledge and the skills in a particular area, we allow him or her to develop the teachers. (South Africa, Teacher, FSS)

In all the schooling sites across the countries, school management and staff drew attention to the fact that despite enlightened inclusive legislation and policies, government funding for inclusive education is very limited. They alluded to the fact that there has to be political will to fund inclusive education initiatives, human and material resources, training, community partnerships and other structures to lever for change. At the primary school in Namibia, the school and parents had a strong commitment to quality education for learners. Despite the fact that primary education is free and obligatory for all residents up to age 16 (through the implementation of Universal Primary Education (UPE) initiative advanced in 2013), parents had committed to pay top-up school fees in order to supplement financial, material and human resources. School management indicated that without the contributions of parents, the school would not have been in a position to purchase stationery, additional books and other

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resources. The concern is that as unemployment is on the increase in the country, parents and caregivers may not be able to sustain their contributions. In South Africa, due to limited funding, both the SSRC and the School-Based Support Team at the FSS struggle to serve as resource structures to other schools in the community, as mandated in the Education White Paper 6. Funding for transport, meetings, professional development programmes is inadequate or non-existent. In both countries, there is an asymmetrical relationship between schools and government. Forward thinking policies, such as the Education White Paper 6 and the Universal Primary Education (UPE) appear to be merely symbolic in nature as there is inadequate funding to support the enactment of the policies at school level. Staff at the school in the Erongo region, in Namibia, explained that due to being located in a mining town, the school depended largely on funding from the Rosh Pinah Mine to complement their budget from the Ministry of Education. However, there was concern for the future as the mine was undergoing challenges and had started to reduce the financial support to the school. They indicated that the majority of parents are low-income earners, and that with limited funding it was difficult for the school to improve the learning and teaching environment. They signalled that stronger partnerships between communities, the Ministry of Education and the private sector was necessary for prosperity. At the Full-Service School in South Africa, a Care and Support Centre has been built by the provincial Department of Education. However, there is inadequate funding to support the innovative initiatives staff want to embark on. We have our Care and Support Centre itself. Our school was identified by the district Department of Education – because of the hardworking teachers. We were already working with those learners who had barriers to learning. That is a vast success because of the workshops that we doing. Funding is one of the big challenges. Our Learning Support Teachers are our facilitators but at times, we call the experts. There is the expert who ran workshops for our teachers so that we can be resources to other schools. We are owing her some money. I think it’s about R4000 for last year’s workshop. So … the workshops are not happening this year. (South Africa, Principal, FSS)

These findings suggest that the relational space has an emotional dimension due to being a site of power and often mediated by asymmetrical power relations. Although there is evidence of agency, solidarity, collaboration, shared values and goals within most of the educational sites, there is also a sense of helplessness and isolation from government and Ministries of Education. The voices of the principal and teachers of SSRC in South Africa reflected anger and disillusionment at the lack of funding and other material for inclusive education initiatives.

Conclusion Using the theory of practice architectures, the study illuminates the complex, situated and unique ‘sayings’, ‘doings’ and ‘relatings’ of inclusive education practice in two

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African contexts. The dynamics of relationships, the ‘saying’ and enactments overlap and shape one another within particular sites. Furthermore, practices are situated within and evolve in the social realities of the sites. This study further supports the argument made by Singal and Muthukrishna (2014) underlining the need to re-vision inclusive education in the Global South through a locally situated inclusive education approach. The study shows that inclusive education practice can never be viewed as a linear process. It is a social and political process shaped by historical influences, competing ideologies, values and belief systems; varied socio-economic, material and practical arrangements; different policy imperatives, contextual struggles and priorities, and different ways of performing inclusion. The research illustrates the nuanced insights that can be gained by exploring inclusive education practices through the lens of practice architectures. It enables an interrogation of whether teachers engage in inclusive education practice in ways that are rights-based, socially just and transformational in nature. Interrogation of the ‘saying’, ‘doings’ and ‘relatings’ in South Africa and Namibia suggests that inclusive education practices are largely technical in nature, focusing on accommodating learners who are constructed as different. There is little evidence of a deep systemic approach to change or as Walton proposes a ‘reconstructive’ orientation (Walton, 2016, p. 77). The lens of practice architectures illuminates how inclusive education practices are constrained and enabled in the different schooling sites. For example, while possible contestations over the inclusiveness of some decisions, the data reflects some degree of agency and self-enquiry on the part of teachers and school leadership in their ‘sayings’, ‘doings’ and ‘relatings’ to support the participation of vulnerable learners and build more inclusive schools. There is little doubt that this agency is constrained by lack of funding to support innovative initiatives. The language and discourses of inclusion operating in the educational sites also work to constrain inclusive education practices. For example, the language of ‘us’ and ‘them’ is pervasive and operates to ‘other’ particular learners. Humanistic values and beliefs (foregrounding care and nurturing) that influence practices have the potential to mask exclusions that are perpetuated under the name of inclusion, for example, support for segregated teaching and learning arrangements for English language learners. Walton (2016) draws attention to the need for teacher professional development programmes to engage with ways to build a critical consciousness and vigilance about how power is embedded within spaces of inclusive education practice, particularly the intersecting semantic spaces and the spaces of ‘doing’ and ‘relating’. It is argued that equipping members of the school community with a social justice and anti-oppression lens have the potential to enhance inclusive education policy implementation. Such a lens would enable stakeholders to interrogate their competing ideologies, values and beliefs as they engage with ways of confronting the inequities experienced by learners and their families. The critical issue in both countries is that dominant counter discourses, systemic inequities and systemic barriers to equity and quality in education (such as pervasive deficit discourses and thinking, lack of funding to support initiatives, large classes, under-resourced schools and classrooms, teacher shortage, inadequate teacher professional development) are left largely unchallenged. Enactments of inclusive education thus become purely technical and uncritical shaped by competing exclusionary and inclusionary discourses.

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Key questions to pose are: can the agenda of inclusive education be achieved in African contexts without the fundamental structural transformation and re-visioning of schools, schooling and education systems and the global social order? Is rightsbased, social justice inclusion education merely an ideal in more developing economies with intricate social histories, such as the impact of colonialism, global and neo-liberal capitalism; and beset by deeply rooted social inequities and socio-economic and political conditions that sustain exclusions and oppressions? How can we decolonize and critically reframe the inclusive education debate for the African context?

Summary of key points ●

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The theory of practice architectures can be used as a lens for illuminating how inclusive education practices are situated and contextual in nature. Particular practice architectures can enable, advance and constrain how inclusive education practice evolves and unfolds. Inclusive education practice can be examined by focusing on three kinds of arrangements: the semantic space, the physical space where enactments occur – ‘doings’ of practice, and the social space or the ‘relatings’ of practice. The lens of practice architectures has the potential to foreground the power-laden, multi-faceted, multi-layered and multi-dimensional nature of inclusive education practice across educational sites and country contexts. The lens of social justice education and anti-oppression pedagogy has the potential to enhance and strengthen inclusive education ideology and practices.

Suggested questions for discussion 1. How does the theory of practice architectures elucidate the contextual and situated nature of inclusive education practice in the two country contexts? 2. Analyse the semantic space in the study, and draw out metaphors in the inclusive education discourses that emerge from the narratives. Critically examine how these metaphors enable and constrain inclusive education practice? What new ‘militant metaphors’ (Walton, 2016) would you suggest to challenge thinking about inclusion and exclusion in schools from a socially just and rights-based agenda? 3. What kinds of meanings, identities and social realities does language and discourse construct in the two African schooling contexts highlighted in this chapter? 4. How can a social justice and anti-oppression lens deepen self-reflexivity regarding schooling for diverse learners and the building of inclusive schools and communities?

References Adams, M., Bell, L. A., & Griffin, P. (1997). Teaching for Diversity and Social Justice: A Sourcebook. New York: Routledge.

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Adams, M., Bell, L. E., Goodman, D. J., & Joshi, K. Y. (2016). Teaching for Diversity and Social Justice (Third Edn). London: Routledge. Armstrong, D., Armstrong, A. C., & Spandagou, I. (2011). Inclusion: By choice or by chance?. International Journal of Inclusive Education, 15(1), 29–39. Aspfors, J. (2012). Induction Practices: Experiences of Newly Qualified Teachers. Finland: Faculty of Education Åbo Akademi University Vasa. Available online: https://www. doria.fi/bitstream/handle/10024/85054/aspfors_jessica.pdf?sequence=2 (accessed 18 July 2016). Ball, S. J., Maguire, M., Braun, A., & Hoskins, K. (2011). Policy actors: Doing policy work in schools. Discourse: Studies in the Cultural Politics of Education, 33(4), 625–639. Carr, W. & Kemmis, S. (1986). Becoming critical. Education, knowledge and action research. London: Routledge Falmer. Engelbrecht, P., Nel, P., Smit, S., & Van Deventer, M. (2016). The idealism of education policies and the realities in schools: The implementation of inclusive education in South Africa. International Journal of Inclusive Education, 20(5), 520–535. doi:10.1080/ 13603116.2015.1095250. Humphrey, N. (2008). Including pupils with autistic spectrum disorders in mainstream schools. Support for Learning, 23(1), 41–46. Kalyanpur, M. (2011). Paradigm and paradox: Education for All and the inclusion of children with disabilities in Cambodia. International Journal of Inclusive Education, 15(10), 1053–1071. Kamanga, C. (2013). JET’s approach to teacher development. In G. Khosa (Ed.), Systemic School Improvement Interventions in South Africa Some Practical Lessons from Development Practitioners (pp. 31–40). Johannesburg: Johannesburg Joint Education Trust. Kemmis, S. (2008). Praxis and practice architectures in mathematics education. Paper presented at the 31st annual conference of the Mathematics Education Research Group of Australasia, 28 June–1 July 2008, University of Queensland, Brisbane. Kemmis, S. & Grootenboer, P. (2008). Situating praxis in practice: Practice architectures and the cultural, social and material conditions for practice. In S. Kemmis & T. Smith (Eds.), Enabling Praxis: Challenges for Education (pp. 37–62). Rotterdam: Sense. Le Fanu, G. (2013). Reconceptualising inclusive education in international development. In L. Tikly & A. Barrett (Eds.), Education, Quality and Social Justice in the Global South (pp. 40–55). London: Routledge. Mahon, K., Kemmis, S., Francisco, S., & Lloyd, A. (2017). Introduction: Practice theory and the theory of practice architectures. In K. Mahon, S. Francisco, & S. Kemmis (Eds.), Exploring Education and Professional Practice: Through the Lens of Practice Architectures (p. 9). Singapore: Springer. Maudslay, L. (2014). Inclusive education in Nepal: Assumptions and reality. A research note. Childhood, 21(3), 418–424. MIET Africa (2013). Partner-driven Cooperation: Teaching for Inclusion and Democracy. A North-South Cooperation on Teacher Education. Durban: MietAfrica. Mukhopadhyay, S., Okechukwu, H. J., & Abosi, O. (2012). Inclusive education for learners with disabilities in Botswana primary schools. SAGE Open, 2(2). Available online: http://journals.sagepub.com/doi/full/10.1177/2158244012451584 (accessed 11 January 2015). Muthukrishna, N., Morojele, P., Naidoo, J. T., & Damant, A. (2016). Access to education in South Africa. In E. G. Iriarte, R. Gilligan., & R. McConkey (Eds.), Disability and Human Rights: Global Perspectives (pp. 133–149). Basingstoke: Palgrave Macmillan.

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Nketsia, W., Saloviita, T., & Gyimah, E. K. (2016). Teacher educators’ views on inclusive education and teacher preparation in ghana. International Journal of Whole Schooling, 12(2), 1–18. Available online: http://www.wholeschooling.net/Journal_of_Whole_ Schooling/articles/12-2 Organisation of African Unity (OAU)/African Union (1990). African Charter on the Rights and Welfare of the Child. Retrieved 18 July 2015 from www.unicef.org/esaro/African_ Charter_articles_in_full.pdf. Phasha, N., Mahlo, D., George J., & Sefa Dei, G. J. (2017). Inclusive Education in African Contexts: A Critical Reader. Rotterdam: Sense Publishers. Republic of Namibia, Ministry of Education (1993). Towards Education for All. Windhoek: Government of Namibia. Republic of Namibia (1997). National Disability Policy. Windhoek: Government of Namibia. Republic of Namibia (2000). National Policy Options for Educationally Marginalised Children. Windhoek: Government of Namibia. Republic of Namibia (2012). Teenage Pregnancy Prevention and Management Policy. Windhoek: Ministry of Education. Republic of Namibia, Ministry of Education (2013). National Policy for Inclusive Education in the Education Sector. Windhoek: Ministry of Education. Republic of Namibia (2013). Ministry of Education’s Sector Policy on Inclusive Education. Windhoek: Ministry of Education. Republic of South Africa, Department of Education (2001). Education White Paper 6: Special Education – Building an Inclusive Education and Training System. Pretoria: Department of Education. Republic of South Africa, Department of Basic Education (2014). Policy on Screening, Identification, Assessment and Support (SIAS). Pretoria: Department of Basic Education. Reygan, F. & Steyn, M. (2016). Diversity in basic education in South Africa: Intersectionality and critical diversity literacy (CDL). Africa Education Review. doi: 10.1080/18146627.2017.1280374. Salamon, A., Sumsion, J., Press, F., & Harrison, L. (2016). Implicit theories and naïve beliefs: Using the theory of practice architectures to deconstruct the practices of early childhood educators. Journal of Early Childhood Research, 14(4), 441–443. Singal, N. & Muthukrishna, N. (2014). Education, childhood and disability in countries of the South: Re-positioning the debates. Childhood, 21(3), 293–306. Singal, N. & Muthukrishna, N. (2016). Reflexive re-storying of inclusive education: Evidence from India and South Africa. In S. Grech & K. Soldatic (Eds.), Disability in the Global South: The Critical Handbook. New York: Springer. Spaull, N. (2012). Kenya at a glance. SACMEQ at a glance series. Available online: http:// resep.sun.ac.za/index.php/projects/ (accessed 15 April 2016). Tchombe, T. M. S. (2017). Epistemologies of inclusive education and critical reflexivity for pedagogic practices in primary years (4–11). In N. Phasha, D. Mahlo, & G. J. Sefa Dei (Eds.), Inclusive Education in African Contexts: A Critical Reader (pp. 19–36). Rotterdam: Sense Publishers. UNESCO (1990). World Declaration on Education for All. Paris: UNESCO. UNESCO (1994). The Salamanca Statement and Framework for Action on Education. Paris: UNESCO. UNESCO (2000). Education for All: Meeting Our Collective Commitments. Notes on the Dakar Framework for Action. Paris: UNESCO.

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UNESCO (2003). The Flagship on Education for All and the Rights of Persons with Disabilities: Towards Inclusion. Available online www.unesco.org/education/efa (accessed 11 August 2016). United Nations (2000). Millennium Development Goals (MDGs). New York: United Nations. United Nations (2006). Convention on the Rights of Persons with Disabilities. New York: United Nations. Available online: http://www.un.org/disabilities/default.asp?id=61 (accessed 11 October 2015). Walton, E. (2016). The Language of Inclusive Education. London: Routledge/Taylor & Francis.

Note 1 It must be noted that SACMEQ IV survey was conducted in 2013. However, there are serious technical concerns over the credibility of results.

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How Prepared Are Teachers to Deliver Inclusive Education: Evidence from Kenya, Zimbabwe and Sierra Leone Maria Kett, Marcella Deluca and Mark T. Carew (Leonard Cheshire Disability and Inclusive Development Centre, UCL)

Introduction Progress towards Education for All (EFA) goals has been slow, and often the most disadvantaged children are the last to benefit, including children with disabilities (Global Monitoring Report, 2015). There has been much debate around why these goals have not been reached, and while there are many contributing factors, one that emerges in every country is the quality of teachers (World Bank, 2017). Teaching quality is impacted by a range of issues, including salary and qualifications, which in turn affect educational outcomes. But it is also important to acknowledge the increased expectations on teachers, for example, with regard to assessments and more recently inclusive education (IE), specifically, ensuring children with disabilities are included in the classroom. Are these expectations to expand the teacher role and remit to encompass a range of diverse needs in the classroom matched by motivation, training, resources and other support? How prepared in terms of knowledge and skills do teachers feel to include children with a wide range of disabilities into their classrooms, and how is this affected by their attitudes towards IE? The aim of this chapter is to present findings from three studies evaluating the role of teachers, which were undertaken as part of IE interventions in three African countries – Kenya, Zimbabwe and Sierra Leone – to test the efficacy of the approach and make recommendations at the programme, policy and global level based on these findings. These interventions were undertaken by Leonard Cheshire Disability (LCD), one of the UK’s largest disability charities. LCD has a substantive focus on international work, has been working in collaboration with partners across Asia and Africa for over twenty-five years, and has a particular focus on education and livelihoods.

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Leonard Cheshire Disability’s core elements of inclusive education Every LCD IE programme has six main activities, although the exact content might differ depending on the country. The six main activities are teacher/school management training; creating an accessible inclusive learning environment; parents, family and community awareness; child identification, assessment and support; child-to-child activities; and working with local civil society and government on institutionalizing IE. All the programmes are also underpinned by effective programme cycle management from a situational analysis, monitoring and evaluation, building the capacity of partner organizations through to project closure. While ideally all of these elements are implemented concurrently from the start, in the real world, it is likely that some will take priority over others, depending on the challenges and opportunities in each context. There is no quick fix or short-cut solution for establishing a successful IE approach for children with disabilities. It is a process that changes and develops over time, given that an effective IE necessitates shifts to meet changes in the curriculum, as well as wider cultural shifts in the acceptance of children with disabilities within mainstream schooling. Where conditions permit, a research component is sometimes included in a programme to evaluate the impact of the programme, as was the case with the examples presented below. Within the LCD approach, children with disabilities are provided material and other support to access education in local primary schools with other disabled and nondisabled children which requires more than a school-level approach, encompassing families, communities, policymakers and practitioners. The model is based on current epistemologies of IE that position it as a multidimensional concept, which cuts across disability, human rights and social justice issues (Hornby, 2015). Consequently, the LCD model incorporates the social model of disability, as well as practices that speak to human rights and social justice perspectives (e.g. child protection mechanisms). Additionally, a unique aspect of this model is the ability to link the research to practice. In all three of the IE interventions discussed below, there was a research component included to evaluate the impact of the programme, in particular around the impact on teacher training, one of the core areas of the approach. The research component in these three IE interventions looked at teacher knowledge, attitudes and practices (KAP). The research was undertaken by the Leonard Cheshire Disability and Inclusive Development Centre. The centre undertakes applied research around policy and practice, working in collaboration with local partners, disabled people’s organizations (DPOs), academics and a range of other actors to provide evidence to inform policymakers and practitioners, not only in LCD but across the field of disability and development more broadly. In this chapter, all three studies focus on evaluations of teacher preparedness to teach children with disabilities in Kenya, Zimbabwe and Sierra Leone. The research specifically focuses on teacher KAP using adapted standardized tools to assess their KAP (e.g. Multi-dimensional Attitudes towards IE scale, Mahat, 2008; Concerns about Integrated Education scale, Sharma & Desai, 2003) and the implications of the results for IE policy and programmes. The research also identifies some common challenges

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for teachers delivering education to children with disabilities, as well as some suggestions as to how these can be overcome – many of which have been included in revisions and adaptations to the programmes. It is hoped that ultimately these changes will improve access and quality of education for children with disabilities. Results from other components of the interventions have previously been published and will not be discussed here for reasons of brevity (see e.g. Deluca & Kett, 2017; Kett & Deluca, 2016).

The role of teachers in inclusive education The most recent World Development Report – the first to focus on education – acknowledges both the centrality of teaching to achieving the goal, while at the same time highlighting some of the current challenges: ‘Teachers often lack the skills or motivation to be effective. Teachers are the most important factor affecting learning in schools’ (World Bank, 2017, p. 10). However, it is too easy to blame teachers for their lack of skills and motivation, rather than seeing these challenges in a wider context of a global crisis in education. Teachers form the bulk of the education workforce globally but in many cases are underpaid, under-resourced, and underqualified and lack recognition or status. At the same time, the global push for EFA has led to a significant focus on the inclusion of children with disabilities in mainstream classrooms – or ‘IE’. While IE encompasses a broad range of ideologies, methods and indeed children, it is more commonly identified with the education of children with disabilities. The ideological agenda for IE arises from decades of advocacy to remove the provision of segregated ‘special schools’ as well as more recently the human rights–based agenda of the UN Convention of the Rights of Persons with Disabilities (UNCRPD), specifically Article 24. So how does the current focus on teachers’ capacity to provide a quality education sit with the increasing focus on providing inclusive, quality education for children with disabilities? Children with disabilities face pervasive obstacles to education, which in turn lead to substantially lower rates of participation in schooling; this is despite the fact that they stand to gain ‘significant economic and social returns’ if and when they do access education (World Bank, 2017, p. 63). As noted above, this gap has led to an increased focus on getting children with disabilities into mainstream schools in line with the rights-based approach and the UNCRPD, as well as the increased focus on ‘leaving no one behind’ in the Sustainable Development Goals (SDGs). So taken together, these global frameworks – from EFA through to the more recent SDGs – have increased the focus on addressing those who have been left behind, which in education, certainly includes children with disabilities (LCD, 2017b). But has this increased focus on equity and inclusion been matched by a similar level of preparation in schools, teacher training colleges, etc.? Research has demonstrated both the links between lower-quality teacher training and teachers’ inability to meet the demands on them to effectively include children with disabilities in the classroom (e.g. Avramidis & Kalyva, 2007; Donohue & Bornman, 2015). Moreover, it has shown that when teachers receive higher-quality training,

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this has a positive impact on the quality of their teaching, resulting in more inclusive classrooms and more effective practice (Mariga, McConkey, & Myezwa, 2014). However, there is relatively little research that evaluates the effectiveness of various approaches to teacher training with regard to educating children with disabilities in low- and middle-income countries (Bahkshi, Kett, & Oliver, 2013). Currently, most IE programmes are delivered by non-state actors such as nongovernmental organizations (NGOs) with some notable exceptions such as the Sarva Shiksha Abhiyan programme in India (see e.g. Singal, 2015). Very few countries in Africa have such state-level programmes and rely on NGOs such as LCD to deliver IE. This means that most IE programmes are relatively small scale, ad hoc, and have little evidence of efficacy at scale. A recent review of IE in developing countries (Srivastava et al., 2015) identified gaps in teacher preparedness to teach children with disabilities, notably around knowledge, attitudes and particularly practice. As the World Bank (2017) reminds us, teacher training is embedded within broader education systems, both national-level pre-service or in-service training programmes. Teachers deliver services based on this training. If the training has not been adapted to take account of wider changes, or targets, then teachers will be ill-prepared to deliver these targets. This highlights the need for systemic change to ensure teachers are equipped to meet the international goals and targets for which they are accountable. However, this approach has also led to a growing number of critiques about the practicalities of the current models in lower-income countries without adaptation to the specific context (e.g. Le Fanu, 2015). This may even be counter-intuitive as if the training is difficult to relate to, or indeed difficult to deliver in practice, and then teachers may decide that, given the range of other factors and issues, they have to contend with not least overcrowded classrooms and limited resources to focus on children who are most likely to deliver results without additional support. Moreover, despite increasing numbers of countries committing to IE, there is still a lack of coherence about what ‘IE’ actually is (GEMR, 2017), how and what teachers should be trained on (curriculum), who undertakes this training, and what the expected outcomes are for children with disabilities. As noted above, very few low- or middle-income countries have such national standards or continuous professional development programmes that are based on evidence.

Delivering inclusive education The research presented here takes as its framework these current discussions around how to achieve global goals in education and assesses teachers’ and head teachers’ KAP to question whether current systems – including teacher training – are adequately preparing teachers to deliver quality IE for children with disabilities. As outlined above, LCD has adopted a core set of approaches to the delivery of its IE programmes. While retaining these core concepts, components can be adapted to the country context – in particular teacher training, given the partnership with ministries of education, teacher training colleges, DPOs and local communities.

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However, as LCD does not directly deliver the in-service teacher training, it works strategically alongside ministries of education, curriculum development bodies, teacher training institutions, teachers’ unions and other NGOs in countries to advocate and support the integration of IE modules in pre-service teacher training, as well as working with these partners to deliver in-service teacher training on IE. Participants (teachers/educators) are usually selected by the local education authorities and ministries of education; the teacher trainers are selected (usually through open tender) from a combination of experts from universities or teacher training colleges in the area (including those with IE/special education needs (SEN) expertise), from local universities, as well as practitioners with experience of working with children with disabilities. Training modules were drafted by the experts in collaboration with LCD, and the training was usually delivered as part of an in-service training programme in schools where the LCD IE programme is being implemented. While this was effective from a delivery perspective, based on feedback from some participants regarding their perceptions of the training, as well as evidence from research and evaluation of the programmes, it became clear that it did not always lead to the expected outcomes of positive changes in teacher KAP, in part because what was being taught was not always based on local contexts or understandings but rather focused on an ‘ideal’ environment, such as that found in higher-income countries. Based on all existing evidence, the most effective way for teachers to be introduced to IE and the inclusion of children with disabilities in their classrooms is, as part of the pre-service teacher training programmes, supplemented with additional short inservice training workshops, in or out of term time (depending on the requirements of national ministries), with the training actually delivered by, or in collaboration with, the local teacher training institutions. However, this is still an ideal, rather than reality in many countries, including those where LCD works. Based on the evidence, LCD reviewed its approach to teacher training and has revised its core module for in-service teachers training. This is based on learnercentred inclusive teaching/training and uses participatory activities to promote thinking and reflection, constructed through an active dialogue between participating teachers and supported by the training facilitators. The focus is on improving presence, participation and achievement for every learner. This revised module is currently being piloted and tested in Uganda and Tanzania. Therefore, it should be noted that the findings presented here are based on the previous teacher training modules.

Research context Before moving on to discuss the research, we will first provide some context to the research. As noted above, a similar approach was adopted across all three of the countries, allowing for some comparison. Despite all three of the countries facing challenges in their education systems, such as low teacher salaries, overcrowded classrooms and lack of resources, all – at least on paper – are committed to IE through a range of policies that support the inclusion of children with disabilities. At the time of writing, none had national IE policies in place, and most of the IE programmes were

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delivered through non-governmental partners, including LCD. Despite the variations between the countries, the results of the teacher surveys were remarkably similar in a number of areas, supporting some of the points raised above. We will return to these at the end of the chapter, after a brief outline of the country contexts followed by presentation of results and findings.

Kenya The East African Republic of Kenya has historically attached significant importance to the education sector as a means to enhance national development, in particular to realize ‘Vision 2030’, the country’s roadmap for development. While Kenya has made significant progress towards the attainment of its education goals (Republic of Kenya, 2012), it still faces a number of challenges with education for adults and children with disabilities, and overall, education access and outcomes for children and adults with disabilities remain low. Nevertheless, Kenya has a number of policies that support the education of children with disabilities, for example, the National Special Needs Education Policy Framework (Ministry of Education, Kenya, 2009) and a Policy Framework for Education: Aligning Education and Training to the Constitution of Kenya (2010), as well as the Kenya Vision 2030 and Beyond (Ministry of Education, Kenya, 2012). In 2017, the government set up a Directorate on Special and Inclusive Education within the Ministry of Education to further support the implementation of these policies as well as piloting a new competency-based curriculum which may improve the learning of children with disabilities. In terms of schooling, children with disabilities are increasingly placed in mainstream schools, where they may be taught in the general class or placed in a resource unit. This is usually determined by the teacher, an Education Assessment Resource Officer and the parent and is in theory based on an individual education plan (IEP). Less frequently, in part because of cost or availability, children with certain types of impartments (e.g. hearing, visual or intellectual) may be sent to ‘special’ segregated schools. While overall enrolment in primary educations is slowly increasing in Kenya, recent overall enrolment rates are given as 87 per cent at primary school level (Ministry of Education, Directorate of Basic Education, 2013). However, according to the same report, enrolment in both special schools and in integrated special units at primary and secondary school represents only about 30 per cent of the expected number of learners with special needs (MoE, 2013). This indicates that the number of children with disabilities (and girls with disabilities in particular) accessing primary education remains low. However, the precise numbers are not known due to weak reporting systems and a lack of clarity about definitions of disability and assessment of impairments.

Zimbabwe Despite historically having one of the highest literacy rates (around 90 per cent of the population) in Africa, due to the ongoing political situation in Zimbabwe, the education

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sector has stagnated, and it is estimated that more than 50 per cent of the estimated 600,000 children with disabilities of school-going age have no access to education in the country (NASCOH, 2013). Efforts have been made to support inclusion, and over time, a number of policy documents have been developed to support the provision of education to children with disabilities, including the Education Sector Review Plan 2015–2020. Zimbabwe is signatory to several IE-related international charters and conventions such as the Salamanca Statement and Framework for Action on Special Needs Education, although Zimbabwe only ratified the UN Convention on the Rights of Persons with Disabilities in 2013. Currently, the education of children with disabilities in Zimbabwe is supervised and managed by the Department of Schools Psychological Services and Special Needs Education. In the Zimbabwean educational system, children with disabilities may be placed in mainstream classrooms, resource units or special classes. Resource units mostly cater for children with hearing and visual impairments, while special classes are intended for children with varying degrees of general learning difficulties. However, the education of children with disabilities was, and still is to a large extent, steeped in integration practices which fostered segregation denoted by special schools and special classes, while on paper policies pointed to inclusion, highlighting a mismatch between policy and practice (Chakuchichi, 2013, unpublished).

Sierra Leone Sierra Leone is one of the least developed African nations (179th in the Human Development Index). It is slowly recovering from the decade-long civil conflict in the 1990s and the more recent Ebola outbreak. The education system in Sierra Leone remains weak, and access to education is generally very poor, particularly for the hardest to reach and most marginalized children, including children with disabilities. Current primary school enrolment rates for all children are estimated at 78 per cent (FHI 360). As there is no assessment system in Sierra Leone, and there are only weak reporting mechanisms at school level, accurate data on children with disabilities is hard to obtain. If they are fortunate enough to go to school in the first place, children with disabilities are most likely to be placed in a mainstream class (though likely without any support or acknowledgement of their needs). Those with specific impairments (such as hearing or visual impairments) may be placed in a segregated ‘special’ school, which may be state or privately run. There is some support for IE within the government of Sierra Leone, but as yet most of the policy support does not translate into action.

Methodology The overall aim of the evaluation component of the research was to test teachers’ KAP towards the education of children with disabilities. In each study, teachers attended a multi-day IE training programme, where they were introduced to various strategies to ensure participation of all learners across the full range of learning environments

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using a training manual that covered key concepts in IE (e.g. the identification of children with disabilities). A refresher training session was offered near the end of programmatic activities. As such, the research design of the studies adopted a two-wave quasi-experimental design. Specifically, participants completed a survey containing all measures at two time periods (i.e. pre- and post-intervention surveys at the training sessions at the beginning and end of the LCD programme intervention, though only pre-intervention was possible in Sierra Leone, partly due to the Ebola outbreak in 2014). Scale measures were used to assess the beliefs, attitudes and practices of teachers about IE, as well as their level of teaching experience, self-efficacy and perceptions of the difficulty of teaching children with disabilities. The survey tools also included a series of open-ended questions designed to further probe responses. The tools are based on standardized, validated measures (e.g. Mahat, 2008; Sharma & Desai, 2003) that have previously been applied cross-culturally, including low- and middleincome settings (see Carew et al., 2016 and Deluca et al., 2014a, b for a copy of the survey and Carew, Deluca, Groce, & Kett, 2018 for a discussion of the adaptations). These measures were identified through a literature review prior to the first study, and the survey tool was refined in subsequent studies if difficulty was indicated with participant comprehension. The field-based surveys were undertaken in partnership with local research institutions in each of the three countries. Specifically, the local research partners selected teams of data collectors and then co-led training on the use of the tools with the UK research team. The research within Kenya was a component of research supporting a UK government–funded Girls’ Education Challenge (GEC) programme (2014–2017). For the KAP study, 123 teachers from 50 mainstream primary schools (all of which received the intervention) were surveyed from the first cohort and again following the three-year intervention period. Of these, thirty were ‘trainers of teachers’ (teacher trainers), teachers who had previous training in special needs education from the government and were selected to cascade the intervention training to other teachers who had no prior training. Consequently, these teacher trainers had more teaching experience overall, compared to teachers (see Carew et al., 2018). The results from Zimbabwe are based on another UK government–funded programme, the Global Poverty Action Fund (GPAF), in collaboration with implementing partners, the Leonard Cheshire Disability Zimbabwe Trust (2013– 2016). Data was gathered from 188 respondents across the three-year intervention period: 136 teachers and 52 head teachers from 268 schools that either did or did not receive the intervention teachers and head teachers in four districts in Mashonaland West Province (MWP), northern Zimbabwe (see also Deluca et al., 2014a, b). Data from Sierra Leone formed part of a Comic Relief-funded programme (2012– 2015) implemented in forty primary schools in two districts in Sierra Leone (Bo in the eastern area and Koinadugu in the northern area). A structured survey was administered to 729 teachers and head teachers in 40 project schools with balanced representation of age and sex ratio (Deluca et al. 2013, unpublished). What follows is a narrative discussion of the findings from each of the three countries and insights generated through comparison of the findings. We finish with

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some suggestions on the specific areas where teachers need additional strengthening to support IE across these settings and the broader implications for the African context.

Findings Based on the results, we have grouped a discussion of the findings into six key themes: 1. Knowledge about inclusive education 2. 3. 4. 5. 6.

Prior experience and perceived difficulty educating children with disabilities Prior training and school attendance Perceived barriers and views of parents Beliefs, emotions and intentions to adopt inclusive practices Concerns and teaching self-efficacy

1. Knowledge about inclusive education Our findings highlight that across all three countries, prior to the intervention, many teachers reported not even having heard the term ‘IE’. For example, in Sierra Leone, half of the teachers had not heard of IE. In Zimbabwe and Kenya, this figure was lower but still substantial at almost a quarter of teachers in each country (range: 22–23 per cent). As might be expected, a greater number of respondents who were more experienced in teaching reported having heard of IE. For instance, in Sierra Leone, three quarters of head teachers, almost all of head teachers in Zimbabwe (97 per cent) and all of the more experienced teachers in Kenya (i.e. teacher trainers) indicated knowledge of IE. While this lacuna is addressed in the programme intervention under discussion here, and all teachers and head teachers who had undergone the training reported at least having heard of IE at the conclusion of activities, these findings highlight a significant knowledge gap that exists in educators with less experience. More work needs to be done to both ensure that all educators have a broad understanding of the requirements of inclusion and, at the same time, to ensure that none of the more experienced educators are left behind when implementing strategies to transfer knowledge about IE. In Kenya, for example, the government-mandated special education training may be an effective approach to achieving the goal of leaving no one behind: however, we would caution that our sample of teacher trainers was too small to draw firm conclusions in this respect. It can be argued that the complexities of IE entail not only that educators acquire a basic understanding but rather they achieve a detailed conceptual understanding of its key principles and how these principles can be implemented in practice. Among the respondents who had heard of IE, some were able to outline key overarching principles, for example: Key elements of inclusive learning are: All pupils are equal and should learn together whether with disability or not. Boys and girls are also allowed to learn

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together. Girl child education is vital. Education for all is necessary. (Teacher, Kenya) All students should be treated equally. Both the disabled and the non-disabled have the right to go to school. You should not separate them from each other. They are all the same. (Teacher, Sierra Leone)

While some had grasped the more transformative aspects: Acceptance and empathy; Accessibility; Re-education of educationists; Reeducation of parents; Teacher training commitment by government. (Teacher, Zimbabwe) [An] inclusive education system breaks the circle of poverty, social justice, challenges, discrimination and promote wider inclusion in the community. (Teacher, Sierra Leone)

Others had a rather more practical focus: To have physical accessibility of school for disabilities; School should have physical accessibility [sic] toilet; Transportation should be provided for disabled children. (Teacher, Sierra Leone) It must include all pupils regardless of disability, a friendly environment which helps children develop socially, morally, physically and spiritually. The system must have adaptable infrastructure which is user friendly to all pupils regardless of age, sex, and disability. Key elements – friendly environment, accessibility of school, user friendly infrastructure. (Teacher, Zimbabwe)

A minority of respondents adhered to the use of normative language when defining IE (e.g. ‘mixing normal learners with those having disabilities’), even at the conclusion of the intervention activities. Such comments highlight how deeply ingrained the medicalized or charity models of viewing disability are within these settings. Encouragingly however, some participants who had undergone training did problematize the term ‘disability’, thus signifying a shift away from such modes of thinking: ‘All learners regardless of their disabilities have a right to education and it is true that disability is not inability’ (Teacher, Kenya). Given the impossibility in any of the countries for teachers to change the prescribed national curriculum – and to some extent practices – in government schools, there is a significant gap in a teacher’s understanding of the principles and what he or she can actually practice. Therefore, in each of the three settings, knowledgeable respondents tended to focus on the practices through which IE is achieved. This included frequently distinguishing between integral factors that are located in the environment (e.g. assistive devices, accessibility modifications to schools) and factors both intrinsic to the teachers (e.g. skill and delivery) and other actors in the classroom, including pupils (e.g. being open and friendly to learners with a disability).

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Overall, a greater percentage of the more experienced respondent groups (i.e. head teachers and teacher trainers) displayed more comprehensive understandings of IE, and in Kenya and Zimbabwe, the intervention did appear to increase knowledge and understanding about inclusion. It is also worth reiterating that in all three settings, there is not one universally agreed definition of IE.

2. Prior experience and perceived difficulty educating children with disabilities Given the nature of the intervention, within each setting, the vast majority of teachers (above 90 per cent) had only experienced teaching mainstream classes and not special schools classes. This was also the case for the more experienced teachers (teacher trainers), though slightly more at just over a quarter overall had taught special schools classes in the past. In all settings, there was an experiential gap for a substantial amount of educators. For instance, prior to any intervention, in Zimbabwe, more than a fifth of teachers and in Kenya more than a sixth reported having no previous experience teaching children with disabilities at all, while in Sierra Leone, this number was higher at over twothirds. Moreover, when considering children with different types of disabilities, findings in all three settings highlighted clear experiential gaps around certain impairments more than others. For example, teachers had particularly little experience of educating children with ‘multiple disabilities’ (this category was not further disaggregated in the survey tool, so it is difficult to elucidate what the teachers might have understood by this term). In each setting and across all educators, where experience of teaching children with disabilities was reported, it was generally with children who had physical, visual, hearing or learning impairments. This suggests that educators have more opportunities to develop their preparedness and teaching skills around children with these impairment types, rather than other – perhaps more complex – types of impairments. Similar findings were also provided by the more experienced Kenyan teacher trainers, though, again, these individuals showed a generally greater breath of experience of educating children with different impairment types in comparison with the teachers. As might be expected, levels of experience in Kenya and Zimbabwe rose over time as a result of the IE intervention, but even after activities concluded, the experiential gap with children with some impairment types remained. For example, pre-intervention, two-fifths of Kenyan teachers reported no experience teaching children with multiple disabilities, and while this had fallen post-intervention, it still remains that over half of teachers have no experience. This also indicates a need to address this gap in the identification and assessment stages of the interventions to ensure children with complex needs are included in the classrooms. Across all settings, educators with less experience teaching children with disabilities tended to view such teaching as quite difficult. This is evinced by a contrasting pattern of findings from Zimbabwe, for instance, where the majority (approximately 55 per cent) of teachers within mainstream classes reported that educating children with disabilities was difficult, while two-thirds working in resource units or special classes reported that it was easy. Disaggregated by impairment type, findings also reveal that

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educators tended to ascribe more perceived difficulty to teaching children with any of the listed impairment types with which they had less experience, compared to those with any of the listed impairment types where generally greater levels of experience of teachers were reported. This is consistent with the work of others that has highlighted the central role of experience in the preparedness of teachers to deliver IE (de Boer, Pijl, & Minnaert, 2011). In Kenya and Zimbabwe, there was some evidence from the survey data that the perceived difficulty of teaching children with disabilities appeared to reduce over time (Carew et al., 2016; Deluca et al., 2016 a, b).

3. Prior training and school attendance These results therefore suggest two reasons for the experiential gaps among educators: a lack of prior training and a dearth of children with certain impairment types within schools. In consideration of the first, in all settings, only a few teachers had undergone training on special education as part of their pre-service training. In Zimbabwe, head teachers reported undergoing general training more frequently than teachers, but specific training on SEN was lacking both for head teachers and teachers (almost twothirds of teachers were not trained in SEN). In Kenya, all of the teacher trainers reported having received training on SEN. However, when this information is disaggregated by training on specific impairment type, the results revealed training gaps for all educators in terms of children with certain impairments, again, in particular, those with multiple and complex disabilities. Although these gaps were relatively consistent across the countries, they were less acute in Kenya. Though many educators in all settings reported no training with children with multiple disabilities, in Kenya, three quarters of teachers and 80 per cent of teacher trainers did report some training. In general, any prior training educators did receive was perceived as relatively effective, though the findings suggest that the training did not cover as wide a range of impairment types as might be expected from a comprehensive programme. Another contributing factor to gaps in the experience seems to be that children with certain impairment types are more likely than others to be enrolled into schools. For example, in Sierra Leone, the majority of children with disabilities were reported as having physical or sensory impairments, while the number of children enrolled with multiple disabilities was recorded as very low. Our data also suggests, at least indirectly, that inaccurate assessment practices may well contribute to the children’s non-enrolment or attendance at school, as well as contribute to the mislabelling of impairments in some cases. For example, in Zimbabwe, prior to the intervention, children with learning disabilities were identified as the most common impairment group included in mainstream classes. After the intervention, this number more than halved, but the inclusion of children with other types of disabilities, such as physical disabilities, rose. There was no overall reduction in the numbers in the special classes or resource units. Discussion of these findings with project staff led to speculation that this was likely due to educators being more able to differentiate between impairment types, as well as more accurately assess the children’s needs – particularly learning disabilities – as the project progressed.

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4. Perceived barriers and views of parents Across all three settings and all groups of educators, there was broad agreement about what were perceived to be the barriers preventing children with disabilities from attending school. Prior to the intervention, many of these were identifi ed as barriers present within the classroom, such as an inaccessible school environment and a lack of assistive devices. While merely adding a ramp to an entrance or providing a child with assistive devices does not equate to inclusion, making schools accessible is an immediately tangible result of any intervention, and it demonstrates commitment to removing barriers even if these are the barriers that are easiest to address in the short term. All educators cited a lack of teacher expertise as a barrier. This may be linked to their limited experiences with children with disabilities, as well as perceptions that current training methods leave many ill-prepared to facilitate inclusion for children, particularly some impairment types. Educators across all three settings also agreed that barriers to school attendance encompassed those located outside of the classroom – and hence out of their locus of control – such as uniform costs, schoolbooks, fees, meals, transportation costs. However, though there may be recognition that these factors pose significant barriers, our data also suggests that it is doubtful if educators are able to correctly evaluate the impact of specific barriers on children with disabilities. For example, in Zimbabwe, we compared the views of educators to that of a group of caregivers ( N = 99). We found that while high direct and indirect costs for schooling their child with disabilities were a key factor in caregivers’ decision to keep their child at home, head teachers and teachers less frequently recognized direct costs (books, uniforms, etc.) as barriers for parents. This may be due to teachers’ perceptions about parental priorities or the perceived availability of social protection mechanisms in place to support vulnerable children’s access to education – whether or not parents actually access these funds.1 It is important to note that in all three countries, poverty was a key overriding factor in a child’s ability to go to school, but from our results, it is unclear to what extent teachers acknowledge this as a significant barrier for all children. Educators’ views towards parents in general were mixed across all three settings, with many believing that the parents themselves were a key factor to a child not attending school. For example, the teachers believed that the parents thought that their children (with disabilities) should not attend school or were unable to learn. However, educators also thought that this might be in part for benevolent reasons, such as worrying that their child would be bullied. Overall, educators in all three settings were quite positive about their ability to build good quality relationships with parents. However, in Sierra Leone, views towards parents were particularly mixed. In this context, teachers were more divided about the extent to which it was the parents who thought that children with disabilities should not go to school or that learning was a worthwhile pursuit for children (with disabilities) or that they could engage in learning very easily. It might be speculated that this is because of views about the education system for all children in Sierra Leone.

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Either way, the findings demonstrate that there are a number of misconceptions between parents and teachers, and in many cases, a lack of communication and understanding. Given the centrality of these relationships to effective inclusion, it is a key area that needs to be enhanced to ensure not only effective inclusion of the children but also of their parents.

5. Beliefs, emotions and intentions to adopt inclusive practices Our survey measured the cognitive (i.e. beliefs) and affective (i.e. emotions) attitudes that educators hold towards IE, as well as the precursor of inclusive practices (i.e. intentions). Across each setting, educators tended to report relatively positive beliefs and emotions towards IE, as well as relatively high intentions to adopt inclusive practices. These findings are encouraging as they suggest that educators are generally open to IE, at least in the abstract, and do not hold deeply ingrained explicit prejudices towards the inclusion of children with disabilities in mainstream classes. Results again were consistent with a beneficial impact of prior experience. That is, the more experienced respondents in each setting, such as teacher trainers and head teachers, reported more positive attitudes in general compared to teachers. In some cases, the intervention appeared to go some way to redressing this disparity. For example, in Kenya, teachers reported less positive emotions towards IE compared to teacher trainers before the intervention, but after activities concluded, there was no significant difference in the emotions of teachers and teacher trainers; that is, the emotions of teachers became more positive over time. The findings from Kenya also highlight the need to consider the different dimensions of attitudes when assessing the impact of IE interventions on the preparedness of educators. Specifically, we found that while the LCD IE approach appeared to positively shift the beliefs and emotions teachers held about IE, there was less evidence that the intervention could impact on intentions to adopt inclusive practices. Translating positive attitudes held in the abstract into long-term realities within the classroom is a key challenge that needs to be addressed within inclusion more generally. Successfully impacting the intentions of educators represents a first step towards this goal.

6. Concerns and teaching self-efficacy A lack of educator preparedness will always represent an entrenched barrier to the practice of IE. To disentangle the reasons why educators may be hesitant to apply inclusive practices within their own classrooms, our research assessed the concerns that educators held, as well as their own perceived teaching self-efficacy. Educators in all three settings appeared to hold a diverse range of concerns, encompassing both self-focused (e.g. concerns stemming from or impacting on the self, such as increased workload or lack of ability) and other-focused (e.g. limitations of the school environment) concerns. For example, in Sierra Leone, the main concerns of educators were both the perceived impact that including a child with disabilities would have on

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their own ability to perform daily classroom activities and the lack of administrative and resource support (e.g. funds, infrastructure, teaching material and teaching aids) as well as the reactions of non-disabled children and their families. Overall, across all three settings, there was general agreement between the less and more experienced respondents (i.e. teachers and teacher trainers/head teachers), though head teachers tended to be particularly concerned about areas that could be seen as outside their sphere of influence, such as a lack of para-professional staff available to support students included in mainstream classes and difficulty in accommodating students with various types of disabilities because of inappropriate infrastructure. Despite, or perhaps because of, these challenges, head teachers and teachers had mixed feelings about job satisfaction. For example, in Sierra Leone, both head teachers and teachers reported being highly satisfied with their job, while on the other hand, many did not think their work was extremely rewarding. Similarly, teachers in Kenya suggested this was related to material reward, such as: ‘The work is too hard. Let teachers get some special allowances’ (Teacher, Kenya). While another noted: ‘The teachers handling children in the schools that inclusive education is practised should be motivated by being given an allowance as is done in special units’ (Teacher, Kenya). In Kenya and Zimbabwe, the IE intervention was noted to reduce teachers’ and teacher trainers’/head teachers’ concerns, particularly self-focused concerns about teaching students with disabilities (e.g. having adequate knowledge and skills required to teach students with disabilities). Educator concerns were lower in Zimbabwe compared to Kenya, and although they reduced over time, post-intervention levels of concerns remained moderately high within Kenya and as such may pose a particular challenge for policymakers wishing to implement IE in schools. A possible explanation for this is teachers’ own perceived inability to impact on external factors, such as results-based curriculum and numbers of children within the classroom – though this may shift as the new competency-based curriculum is introduced in Kenya. Despite the aforementioned concerns, educators in all three settings were relatively sanguine about their perceived teaching self-efficacy, and educators who possessed more experience (i.e. head teachers and teacher trainers) were more positive in comparison to teachers. One outcome of these research findings is the need for all parties to focus on addressing school-based concerns to fully achieve inclusion, rather than teacher self-efficacy, as it is clear that IE interventions do promote educator self-efficacy.

Conclusions and recommendations The results from all three countries indicate that there is willingness among teachers to include children with disabilities into mainstream classes but iterate this requires adequate training and resources. As Sæbønes et al. (2015) found, most teachers – whatever their level of experience – were convinced that the lack of expertise of teachers represents a barrier to children with disabilities going to school. Findings here suggest that programmes addressing teacher beliefs, attitudes and practices can

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reduce some of the barriers, but not all. There is a need to broaden discussions around inclusion to assess how all these factors impact on willingness to practise IE and the perceptions of the difficulties that educators face inside learning environments, as well on the broader point that additional resources (including personnel, financial, materials, etc.) are needed in order for IE to be successful. It is striking that similar issues, such as over-crowded classrooms, lack of teaching and learning materials, and limited capacity to undertake assessments of a child’s abilities, were found in all three countries, despite the geographic, socio-economic and political differences. What is also striking is that these were the very factors considered by head teachers and teachers in all three countries to be essential for teachers to achieve EFA goals in general and IE specifically. Some are systemic and speak to the issue of teacher training (Black-Hawkings & Amrhein, 2014). An important and relatively straightforward first step would be to ensure IE is taught as a compulsory part of pre-service teacher training, using agreed and standardized terms and approaches, adapted to the local context. To resolve the in-service gap, harmonized and accredited training should be provided and teachers given regular updates (continuous professional development). While a lack of a systemic approach to IE has certainly hindered progress in all three of the countries, another barrier may be that the education of children with disabilities is usually considered the ‘responsibility’ of the department of social welfare, rather than the education department. This means that decisions about financing and other policy decisions around education for children with disabilities run the risk of falling between the gaps – even in countries such as Kenya, where there are disability focal points in each ministry now. There are other factors inhibiting inclusion; for example, it is clear there is a gap in communication between the health and education sectors in the three countries presented here which has led to missed opportunities for early detection, assessment and intervention. This lack of communication or joinedup approach can result in gaps in transmission of information and lack of continuity in care and support at crucial development stages, such as the time a child starts preor primary school. Improving the links between health and education departments would lead to better services and support of children with disabilities, which may be vital to improve their life chances. Other departments, such as transport, also need to work together with the ministries of education to improve access to schools for all children, from improved roads through to school transport provision. The provision of these can be a difference between a child going to and remaining in school. It is all the more important, as the team came across examples in all three of the countries, whereby parents had moved their children from the local (non-intervention) school to one where an IE intervention is taking place. Not only does this go against the principles of inclusion, but it can also exacerbate issues of access and transport, as well as safety and security for these children if they have to travel long distances alone. There also needs to be a much clearer understanding of how successfully IE links to existing policy and how educators, parents and communities can influence policymakers to improve quality education for all children. Head teachers and teachers need to have a voice to lobby ministry officials, provincial councils and other

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key stakeholders for additional resources required for inclusion, as well as recourse mechanisms to support them when the promised support, services and resources are not available. All of this can be done more effectively in partnership with parents, DPOs and other civil society groups. The findings from teachers in the three countries presented here chime well with current global recommendations (World Bank, 2017). It is clear that ensuring the inclusion of children with disabilities requires more than just basic interventions (e.g. teaching and learning materials) and needs more joined-up, cross-sectoral thinking (Bakhshi et al., 2013; Riddell, 2012). IE can only succeed when teachers are motivated and feel they have the skills to teach to the level of the students.

Summary of key points ●

●

●

IE for children with disabilities is often stymied by a range of factors, including teachers themselves, but we need to see these challenges in the wider context. Teachers need to be better prepared to support IE in mainstream classes. Models such as the one demonstrated here work but highlight gaps in teacher preparedness. Learning needs to be fun for both learners and educators. Otherwise, we continue to risk leaving children behind, particularly those with disabilities, as well as the adults who educate them.

Suggested questions for discussion 1. What are the key debates around inclusion among the different actors? 2. Can the progress of children with disabilities be measured on an equal basis with others? 3. What specific measures should be undertaken to ensure teachers feel motivated and capacitated?

References Avramidis, E. & Kalyva, E. (2007). The influence of teaching experience and professional development on Greek teachers’ attitudes towards inclusion. European Journal of Special Needs Education, 22, 367–389. Available online: http://dx.doi. org/10.1080/08856250701649989 Bakhshi, P., Kett, M., & Oliver, K. (2013). What Are the Impacts of Approaches to Increase the Accessibility to Education for People with a Disability across Developed and Developing Countries and What Is Known about the Cost-effectiveness of Different Approaches? London: EPPI-Centre, Social Science Research Unit, Institute of Education, University of London. Black-Hawkins, K. & Amrhein B. (2014). Valuing student teachers’ perspectives: Researching inclusively in inclusive education? International Journal of Research & Method in Education, 374, 357–375, doi:10.1080/1743727X.2014.886684.

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Carew, M. T., Deluca, M., Groce, N., & Kett, M. (2018). The impact of an inclusive education intervention on teacher preparedness to educate children with disabilities within the Lakes Region of Kenya. International Journal of Inclusive Education, Advance online publication. Carew, M. T, Deluca, M., & Kett, M. (2016). Analysis of the Comparative Survey Assessing the Effectiveness of the Leonard Cheshire Disability Inclusive Education Intervention (pdf). London: Leonard Cheshire Disability and Inclusive Development Centre. Chakuchichi, D. (2013). Inclusive Education in Zimbabwe: Mashonaland West Province. Unpublished Baseline Report for LCD. De Boer, A., Pijl, S. J., & Minnaert, A. (2011). Regular primary schoolteachers’ attitudes towards inclusive education: A review of the literature. International Journal of Inclusive Education, 15(3), 331–353. Deluca M. & Kett, M. (2017). The Role of Classroom Assistance on Teaching Practices and on Retention of Children with Disabilities (pdf). London: Leonard Cheshire Disability and Inclusive Development Centre. Deluca, M., Pinilla-Roncancio, M., & Kett, M. (2016a). Research Report: Post Intervention Survey on Knowledge, Attitudes and Practices (KAP) on Disability and Inclusive Education in Zimbabwe (pdf) (Mashonaland Province). London: Leonard Cheshire Disability and Inclusive Development Centre. Deluca, M., Pinilla-Roncancio, M., & Kett, M. (2016b). Research Report: Pre- and Postintervention Comparative Analysis – School Level Data and Survey on Knowledge, Attitudes and Practices (KAP) on Disability and Inclusive Education in Zimbabwe (Mashonaland Province). London: Leonard Cheshire Disability and Inclusive Development Centre (pdf). Deluca, M., Tramontano, C., & Kett, M. (2013). Increasing Access for Disabled Girls and Boys in Primary School in Sierra Leone and Understanding the Challenges and Opportunities for Education for All in Post Conflict Countries. Leonard Cheshire Disability and Inclusive Development Centre, unpublished research report. Deluca, M., Tramontano, C., & Kett, M. (2014a). Research Report: Inclusive Primary Education for Children with Disabilities in Zimbabwe (Mashonaland Province). London: Leonard Cheshire Disability and Inclusive Development Centre. Deluca, M., Tramontano, C., & Kett, M. (2014b). Including children with disabilities in primary school: The case of Mashonaland, Zimbabwe. Leonard Cheshire Disability and Inclusive Development. Centre Working Paper Series No. 26. London: LCDIDC. Donohue, D. K. & Bornman, J. (2015). South African teachers’ attitudes toward the inclusion of learners with different abilities in mainstream classrooms. International Journal of Disability, Development and Education, 62(1). Available online: http://dx.doi. org/10.1080/1034912X.2014.985638 Global Education Monitoring Report (2017). Accountability in Education, Meeting Our Commitments. Paris: UNESCO. Global Monitoring Report (2015). Education for All 2000–2015: Achievements and Challenges. Paris: UNESCO. Hornby, G. (2015). Inclusive special education: Development of a new theory for the education of children with special educational needs and disabilities. British Journal of Special Education, 42(3), 234–256. Kett, M. & Deluca, M. (2016). Transport and access to inclusive education in Mashonaland West Province, Zimbabwe. Social Inclusion, 4(3), 61–71. doi:10.17645/ si.v4i3.502.

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Le Fanu, G. (2015). Imagining disability? Conceptualizations of learners with disabilities and their learning in the pedagogic manuals of international development agencies. International Journal of Educational Development, 40(2015), 267–275. Leonard Cheshire Disability (2017a). Inclusive Education: Technical Information and Guidance (Unpublished). London: Leonard Cheshire Disability. Leonard Cheshire Disability (2017b). Still left behind: Pathways to inclusive education for girls with disabilities. LCD/UNGEI. Available online: https://www.leonardcheshire. org/sites/default/files/still_left_behind_-_pathways_to_inclusive_education_for_girls_ with_disabilities_-_leonard_cheshire_disability_-_ungei.pdf Mahat, M. (2008). The development of a psychometrically-sound instrument to measure teachers’ multidimensional attitudes toward inclusive education. International Journal of Special Education, 23(1), 82–92. Mariga, L., McConkey, R., & Myezwa, H. (2014). Inclusive Education in Low-income Countries: A Resource Book for Teacher Educators, Parent Trainers and Community Development Workers. Cape Town: Atlas Alliance and Disability Innovations Africa. Ministry of Education (2009). The national special needs education policy framework, Kenya. Available online: http://www.unesco.org/education/edurights/media/docs/4468 08882707702aafc616d3a2cec918bfc186fc.pdf Ministry of Education (2012). A policy framework for education: Aligning education and training to the constitution of Kenya (2010) and Kenya Vision 2030 and beyond. Ministry of Education (2013). Kenya Directorate of Basic Education. National Association for Societies of the Care of the Handicapped (NASCOH) (2013). Republic of Kenya Ministry of Education (2012). Education for All End Decade Assessment (2001–2010). Republic of Kenya and United Nations Educational, Scientific and Cultural Organization (UNESCO). Available online: http://unesdoc.unesco.org/ images/0022/002260/226082e.pdf Riddell, A. (2012). The effectiveness of foreign aid to education: What can be learned? UNU/WIDER Working Paper No. 2012/75. Available online: http://www.wider.unu. edu/publications/working-papers/2012/en_GB/wp2012-075/ (accessed 15 August 2015). Sæbønes, A., Berman Bieler, A., Baboo, N., Banham, L., Singal, N., Howgego, C., McClainNhlapo, C., Riis-Hansen, T. & Dansie, G. (2015). Towards a disability inclusive education. Background paper for the Oslo summit on education for development. Available online: http://www.osloeducationsummit.no/pop.cfm?FuseAction=Doc&pA ction=View&pDocumentId=63386 (accessed 12 August 2015). Sharma, U. & Desai, I. (2003). Measuring concerns about integrated education in India. Asia and Pacific Journal of Disability, 5(1), 2–14. Singal, N. (2015). Education of children with disabilities in India and Pakistan: An analysis of developments since 2000. Background paper prepared for the Education for All Global Monitoring Report 2015. Available online: http://unesdoc.unesco.org/ images/0023/002324/232424e.pdf Smith, H., Chiroro, P., & Musker, P. (2012). Process and impact evaluation of the Basic Education Assistance Module (BEAM) in Zimbabwe: Final Evaluation Report. Ministry of labour and social services, Government of Zimbabwe. Available online: https://www.unicef.org/evaldatabase/files/BEAM_Evaluation_Final_Report.pdf Srivastava, M., Boer A., & Pijl, S. J. (2015). Inclusive education in developing countries: A closer look at its implementation in the last 10 years, Educational Review, 67(2), 179–195. doi:10.1080/00131911.2013.847061.

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World Bank (2017). World Development Report 2018: Learning to Realize Education’s Promise. Overview booklet. World Bank, Washington, DC. License: Creative Commons Attribution CC BY 3.0 IGO.

Note 1 The Basic Education Assistance Module was available in Zimbabwe until 2015 (see Smith et al., 2012).

Acknowledgement We thank Harriet Knowles (Leonard Cheshire Disability) for her comments on an earlier draft of this chapter.

Child, Family and Community

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Exploring Ways to Support the Infrastructure for Early Childhood Development: A Study of Children with Visual Impairment in Malawi Paul Lynch (University of Birmingham) and Melissa Gladstone (University of Liverpool)

Introduction One in three children – approximately 200 million globally – fails to reach their full physical, cognitive, psychological, psychosocial and emotional potential due to poverty, poor health, recurrent infections, poor nutrition, insufficient care and stimulation (Black et al., 2016). Over the past fifteen years, global interest in promoting early child development (ECD) has increased exponentially with emerging evidence for the effectiveness of combined basic sectoral health, stimulation, protection and nutrition programmes, particularly if provided in the first 1,000 days of life (Black et al., 2016). ECD is a major phase of growth and development that influences outcomes across an individual’s entire life, providing a crucial window of opportunity to prepare the foundation for life-long learning and participation (WHO, 2012). Overwhelming international evidence shows that high-quality ECD programmes benefit all children’s development (cognitive, psychosocial and well-being), life experiences and life chances (Blatchford & Woodhead, 2009). Since 2014, the United Nations, through its Sustainable Development Goals (SDG), has begun to prioritize ECD internationally (goal 4, target 4.2 promotes ‘access to quality early childhood development, care and pre-primary education’, UN, 2014). The UN goals seek to achieve improved quality education by ‘ensuring inclusive and equitable education and life-long learning opportunities (including persons with disabilities)’. Access to quality ECD services for young children with disabilities (nominally grouped between the ages of 0 and 8 by UNICEF) is even more important, given they require opportunities for stimulation and for the development of key functional skills (WHO, 2012). The high rates of developmental delay and disability in children

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in the Global South are a major concern for the global community and the rates are expected to increase as more and more children survive due to improved medical care and interventions (Black et al., 2016). With the high burden of care needed to support children with developmental delay and disability (Yousafzai et al., 2014), these children may be surviving but are not ‘thriving’. Recent research highlights the wide range of barriers to achieving quality provision for these young children including malnutrition and stunting which is a result of poor maternal health and nutrition, inadequate infant and young child feeding practices, and infection in the first 1,000 days (WHO, 2012). Without the appropriate early interventions, support and protection, their impairment or disability could become more severe or complex – leading to long-term consequences, increased poverty and marginalization (WHO, 2012). Very few studies have specifically focused on the care, stimulation and play of children with disabilities in low-income settings. These have mainly concentrated on carer burden and have described a variety of extra burdens on families that include physical pain from handling children with disabilities, time taken for daily care, extra finances, stigmatization from communities and parental stress (Gona et al., 2011; Mushi et al., 2012). Although some small studies have been undertaken in specific groups, there is still a dearth of evidence for specific disabilities, for example, sensory impairments, physical impairments, behavioural and communication difficulties, and cognitive difficulties, all of which may have different aetiologies and may need specific interventions (Yousafzai et al., 2014). Although there is evidence of the benefits in early intervention programmes for children with hearing loss, intellectual disabilities and autism (Green et al., 2010; Roberts et al., 2011) in the Global North, it is still unclear what effect early intervention has on all childhood disabilities in the Global South. The involvement of the family as partners in the (re)habilitation process of children with disabilities is important for the achievement of successful outcomes for the child (Yousafzai et al., 2014). Services need to appreciate the needs of the primary caregiver (McConachie et al., 2001) as well as the individual child and provide access to appropriate information and support (Mobarak et al., 2000). In light of the fact that most (re)habilitation takes place at home, rigorous and methodologically sound studies are needed that analyse the capacity and role of these carers to understand how best to support these children in their early years and into the immediate and long-term future. Many studies in the Global North in ECD have primarily focused on interventions where parents are primary caregivers; however, in some parts of Africa, over a third of children under three years are often cared for by siblings under the age of ten (Heyman, 2007; UNICEF, 2012). These factors need to be taken into account when creating intervention programmes to promote ECD and stimulation in children including those with disabilities. In this chapter, We will discuss a two-year mixed methods study to demonstrate the different influences acting on the development of the child with visual impairment (VI) at and between all levels of a bioecological system theory. We will draw on the research findings to understand and contextualize the experiences and perspectives of carers of preschool children with VI in rural and urban settings in Malawi. We will conclude with a discussion on the implications of the findings for policy and practice in Malawi and potentially within the sub-Saharan region.

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Short review of early years and visual impairment Early childhood interventions (ECI) for children with VI (for both blindness and severe low vision) crucially build on children’s existing visual abilities as well as other senses (touch, taste, etc.) (Ferrell & Muir, 1996). They can significantly benefit from developmental stimulation such as encouraging greater awareness of the world around them. (Cass et al., 1994; Dale & Sonksen, 2002). Studies, such as those conducted by the Developmental Vision Team at Great Ormond Street Hospital (Sonksen and Stiff, 1991), have led to the development of programmes in high-income countries, which provide information on how to support progress along a developmental trajectory through the encouragement of using other senses. Programmes include the ‘Oregon Project’ in the United States and the ‘Developmental Journal’ in the UK. Despite these programmes, there is limited evidence of similar support being developed in the Global South. Evidence remains sparse as how best to develop, implement and evaluate programmes which enable support for parents of children in the early years with disabilities including VI particularly in contexts of limited resources (Gladstone et al., 2017).

Disability in Malawi Malawi is a small landlocked country in the southeastern part of Africa with a population of approximately 18 million people – comprising 85 per cent of inhabitants in rural areas. More than 70 per cent lived below the World Bank’s new $1.90 poverty line in 2010 (PovcalNet, 2015). It is one of the poorest countries in the world: ranked 170 out of 188 countries in the UN Human Development Index in 2017. Over half of Malawi’s people are under eighteen years of age, making it one of the youngest populations in the sub-Saharan African region. About 1.8 million (53 per cent girls and 47 per cent boys) either do not live with their biological parents or live in households where no adult has had at least primary schooling. It is difficult to estimate how many children under the age of 18 have a disability in Malawi, but a recent key informant study carried out by the International Centre for Evidence in Disability (ICED) in two out of the twenty-eight districts estimated around 17.3/1000 children having any impairment (including epilepsy) and approximately 0.7/1000 children having a VI (ICED, 2014). The major causes of childhood blindness in Malawi are congenital cataract, corneal scars from measles, vitamin A deficiency, harmful traditional practices, bacterial infections, trachoma and birth trauma (Kalua et al., 2008). The Malawi government has prioritized ECD as part of a recent Growth and Development Strategy II (2012–2016). A key focus of this strategy has been to increase equity of access and improve the quality of early childhood services, which are currently reaching just over one-third of children aged 3–5 years. Marginalized groups including young children with disabilities are not specifically mentioned in the strategy, but as a signatory of the United Nations Convention for the Rights of People with Disabilities (UNCRPD), the government recognizes the importance of increasing educational access for this group (2006).

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ECD in Malawi is primarily the responsibility of the Ministry of Gender, Children, Disability and Social Work (MoGCDSW) which is expected to play a pivotal role in facilitating policy and strategy development and provide oversight for national monitoring and implementation of a multi-sector programme. The National ECD Policy (2017) aims ‘to provide and enhance a coordinated and comprehensive approach in the implementation of accessible, quality and equitable ECD services’ (p. 17). The government states it has ‘a pivotal role to establish a strong and sustainable system and strategies for enhanced quality and comprehensive implementation of ECD services’. However, it relies substantially on external organizations and agencies to provide the essential services required to build an ECD infrastructure and trained human resources. The government recognizes a weakening of traditional parenting education systems in urban areas of Malawi coupled with high number of adolescent carers who become parents and take on a parenting role without having received counselling and/ or parenting education (Gladstone et al., 2017). Another policy that supports children with disabilities is the National Policy on Equalization of Opportunities for Persons with Disabilities (2006). It advocates a community-based rehabilitation (CBR) approach to supporting people with disabilities. CBR has played an important role in supporting grass-roots initiatives at community levels in Malawi for nearly thirty years. Half of the country’s districts (fourteen out of twenty-eight) have had some form of CBR programme usually funded by an external donor such as Sue Ryder International. All CBR programmes depend on donor funding with very limited investment of locally generated financial resources (National CBR Model, 2016) and engage with community volunteers who are expected to take local ownership of the programme. More recently, a pilot ‘Portage’ model, which was first set up in the United States in 1969, was adopted in Northern Malawi in 2009 to support parents and practitioners to use a small steps approach to learning, breaking down long-term goals into achievable targets that are practical and relevant for the child, family and community (Kelly et al., 2012). Portage offers a useful framework for supporting children with disabilities at home but a good quality programme requires well-trained visitors who are able to carry out different structured teaching methods and access to good resources (Kelly et al., 2012). The Portage programme responded to a call from communities about the inadequate support for carers in bringing up their children with disabilities and using local people trained as home visitors. Efforts in developing a supportive village culture aimed at promoting the respect and rights of the child as a citizen of that community are important strategic considerations. The next section sets out details of a two-year study, which sought to address some of the level of inadequate support for carers of children with VI in Southern Malawi.

Review of the study In response to the strong need to carry out research into early childhood development and disability, more specifically children with VI, the authors, in collaboration with academic and NGO partners, developed a study to explore ways of redressing these

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gaps. In particular, we were interested in exploring the barriers carers of children with VI faced in raising a child in urban and two rural regions of Southern Malawi. The team wished to understand and contextualize the experiences and perspectives of carers of preschool children with VI (between the ages of 0 and 6) in Malawi. More specific project objectives were: 1. to investigate the personal experience, knowledge and understanding of carers looking after children with VI (stage one); 2. to run a feasibility pilot study to create, adapt and pilot a training package to provide advice and information on developmental stimulation (early communication and play) for parents of children with VI in their homes in rural and urban settings in Malawi (stage two) and 3. to gain an understanding of the perceptions of carers and community professionals relating to the main facilitators, barriers and acceptability of providing this programme (stage three).

The research team comprised educationists from the University of Birmingham and a clinical paediatrician from University of Liverpool in collaboration with a small team of researchers at Montfort Special Needs Education College in Malawi. An international non-government organization (Sightsavers) was also involved in data collection and analysis of a multistaged study from March 2013 until March 2014.

Sampling and recruitment We used key informant methods (KIMs) (ICED, 2014) to identify children with VI (between the ages of 0 and 6 years) drawing on a range of key informants (e.g. CBR workers, members of blind persons organizations, specialist teachers) living and working in three areas of Malawi – Blantyre Urban, Blanytre Rural and Chikwawa. A total of seventy children were identified using a combination of KIM (see chapter 4 by MacTaggart and Kuper for more details about KIM) and visits to the main eye clinic in Blantyre as well as at two eye clinics in district hospitals in Blantyre Rural and Chikwawa. We selected thirty out of seventy identified children – twenty-four children had low vision and six were blind (nineteen boys and eleven girls) aged between eight months and six years. Two children were blind and had cerebral palsy, one child was blind and had epilepsy and developmental delay, one child was blind and had multiple disabilities, four had albinism, and some had no clear diagnosis. The forty of the seventy children not recruited for the study either were of school age or did not have a clinically diagnosed VI when the research assistant visited the family (see Gladstone et al., 2017 for more details about the sampling framework). In addition, we recruited a total of fourteen community professionals (eight male and six female) drawing from specialist teachers for children with VI, community professionals (e.g. child protection officers) and volunteer community-based rehabilitation workers to support a maximum of three children each.

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The study drew upon the COREQ (Consolidated Criteria for Reporting Qualitative Research) reporting checklist (Tong et al., 2007) to guide us on how best to introduce the research to our participants and handle questions about the logistics (interview and training protocol). All selected families received structured written and verbal information about the purpose and procedures of the study. We obtained written informed consent from each participant. Both the College of Medicine Research Ethics Committee, Malawi, and the Research Ethics Committee at the University of Birmingham granted ethical approval.

Methods We used a mixed methods approach following guidance from the MRC Framework for Developing and Evaluating Complex Interventions (Craig et al., 2008). For our first objective which was met during stage one of the study, we drew on participatory research methods to collaborate with families and professionals already engaged in the preliminary qualitative work to ratify the appropriateness of training activities (Gladstone et al., 2017). We carried out a total of four participatory action research (PAR) sessions with carers and community members as well as twenty in-depth interviews with carers of children with VI. We also used observational methods to generate a description of ‘days in the life’ of young children with VI, which helped to gain an insight into (i) carer–child interactions, (ii) contexts and patterns of behaviour, and (iii) opportunities for parent-care and child interaction. We carried out ten observations set within the normal routine of the parent and child’s day – around meal times and/or routine activities such as washing and bathing, preparing and cooking food, feeding or during daily chores, for example, sweeping the home. For our second objective, which was met in stage two, we ran a feasibility pilot study over six months to test the effectiveness of a parent-child stimulation training package which was based on an existing training package developed by WHO/UNICEF (Care for Child Development) for typically developing children between 0 and 3 years (2012). We tested the different materials with a cohort of thirty children with VI aged 0–6 years and their carers in the three districts. Information was collected on the number of visits carried out by the fourteen community professionals to each child (on average one every two weeks over six months). They entered logistical data (including date and time of visit, distance to the child’s home, form of transport used, length of visit) or a description for not being able to carry out the visit, for example, carer not there, refused to see community worker, bad weather conditions, etc. For our third objective, which was met in stage three, we carried out a total of twenty in-depth interviews and a focus group discussion with six of the carers to gain an understanding of the perceptions of families relating to the main facilitators, barriers and acceptability of providing this programme. All the carers were mothers of the children (apart from one, who was the child’s nanny). We used a thematic content analysis in stages one and three where themes were coded as they emerged from the PAR group, in-depth interviews and the observation data. Codes were collapsed into a coding framework with main themes and sub-themes

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under each of Bronfenbrenner’s hierarchical levels and placed within the framework (see Figure 12.1) (Bronfenbrenner, 1994).

Conceptual framework for study We utilized a framework approach based on Bronfenbrenner’s bioecological systems theory which helped us to understand how the training and monitoring of parents on a two-weekly basis over six months affected not only the child but the family and the wider environment (Bronfenbrenner, 2005; Niemann & Jacob, 2000). Bronfenbrenner’s framework considers how human development takes place through processes of reciprocal interaction between the developing child and the persons, objects and symbols in the environment. The form, power, content and direction of these processes vary as a joint function of the characteristics of the developing child and of the environment (both immediate and remote) in which the processes are taking place and the nature of the developmental outcomes under consideration. This is illustrated as a nested system of ‘environments’ which interplay with one another. These systems include the ‘microsystem’ – the interpersonal relationship and physical setting directly experienced by the child (e.g. family, peer group, early childhood centre and neighbourhood), the ‘mesosystem’ – the linkages and processes taking

Macrosystem (governmental policies, structural factors and culture) Environmental safety and child protection

Exosystem (professionals/organisations indirectly influencing processes)

Knowledge and training of health professionals and community workers

Maternal responsibility, time, work and day to day requirements

Prejudice, stigma and discrimination

Mesosystem (community and professional processes and linkage between microsystems)

Microsystem (home, school, community) caregivers Support from other caregivers

Family and social networks Hopes and concerns for the future

Responsivity, maternal mental health and capacity

Complex needs Understanding about VI Health

Child with visual impairment

Medical requirements Communication

Figure 12.1 Diagram showing levels at which there is reciprocal interaction between the developing child and the persons, activities and the environment

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place between two or more microsystems (e.g. school and home), the ‘exosystem’ – the linkages and processes taking place between home and settings which may indirectly influence processes in the immediate setting (e.g. parent workplace, family and social networks, neighbourhood and community contexts) and finally, the macrosystem – the overarching pattern of the micro-, meso- and exosystems within a given culture and setting (e.g. policies, structural factors, life and culture).

Study findings In this section of the chapter, we report on the findings in line with the chronology of the study. The four levels of the diagram in Figure 12.1 will be used to discuss the findings from stages one and three: (1) the level of the child (individual), (2) the carer and family (microsystem), (3) the community (microsystem and mesosystem), (4) the teacher and other professional organizations (mesosystem and exosystem), and finally, (5) the level of policy and culture (exosystem).

Stage one: Investigating the personal experience, knowledge and understanding of carers looking after children with visual impairment The child (individual) with visual impairment within the microsystem Carers were able to provide examples of how VI had a direct impact on their child’s ability to communicate, play and build important concepts of the social and physical world. They felt a lack of toys and different sounds could affect their child’s motivation to play. Some carers said they found it difficult to play with their children and did not know what to do to help stimulate them at home. Some carers described play as an activity you ‘do with the child’ when they are well. Children who experienced pain or an itchy feeling in their eyes showed less interest in wanting to play. The ability to play for children with VI seemed to be associated with wellness according to a number of carers. Some children with albinism experience difficulties with their vision on a number of levels, particularly in relation to sensitivity to sunlight, nystagmus (involuntary eye movement), and problems with seeing people and things at a distance, so parents had to find ways of reducing the amount of sun exposure their child had outside the house. Other issues described by carers included managing behaviour, particularly disruptive and obstructive behaviour. The lack of communication seemed to underpin a child’s delayed social and emotional development. One carer explained how it was not until she began to understand her child’s non-verbal communication that she could help her child: ‘She spits when I try feeding her and I realized she wants to eat on her own but just wants me to put it into her hand so I put it on a plate and she eats from it.’ Some carers were unaware of how to play with their children with VI and some did not know that their children could receive stimulation through other sensory modalities (touch, smell and sound).

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When the child cannot see there is no stimulus for him to play … I am saying this with reference to my child …. He does not have motivation to play that is why I am finding it hard …. I … doubt whether my child will ever play [seeming frustrated] because he cannot see.

The carer and family within a larger mesosystem The carers demonstrated a strong desire to respond to their child’s behaviour, adapting the way they communicate to and interact with their child. They noticed that including touch and talking to their child about what they were doing helped create a closer bond with their child. One carer described how she responded through communication and movement: ‘When I’m passing by she touches my clothes and I do the same and you will see her smiling and laughing, feeling good about it.’ Some carers talked about interacting with their children with VI by singing or telling their child they were near. Some narrate their daily routine to help their children make sense of the social and physical world. The carers felt the need to know more about their child’s condition; however, many described difficulties regarding obtaining advice from health professionals at the health clinics they visited. This is partly due to fewer paediatricians working in child health in Malawi. Equally, many trained medical staff are not sufficiently aware of ECD and disability and how developmental stimulation and timely interventions can make a difference to the lives of these children in the long term. Most carers did not know that their child could play, grow or develop in the same way as typically developing children if provided the right support or intervention. Some families in the urban setting had managed to get advice from the umbrella organization that represents disabled persons organizations (DPOs) or from specialist teachers for carers. No families in rural settings discussed getting specific advice about how to care for their child. Many of the thirty children in our study had additional medical needs that required support from medical services. The carers expressed that it was not easy to understand the medical system, particularly in relation to obtaining the appropriate sort of help at the right time. Taking a child to a clinic often requires a reorganization of the carers’ daily schedule, and this is not always possible when they have to run a busy home. One carer explained how she had been sent from one clinical department (mesosystem) to the main hospital (exosystem) in the biggest city nearest to them (Blantyre) that has a dedicated paediatric centre but still she did not know what her child should be given as a treatment: ‘I see that the real help they are not giving me so I just stopped … I just got tired of walking.’

Community and professional processes between micro- and mesosystems Many carers described some of the barriers they faced regularly from their own community. They felt there was often a lack of acceptance with some children who may look or behave differently and feared they could even be harmed by others in the community. One carer explained what difference it made if her child was accepted:

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For play it depends on the type of friends he is playing with at that particular day, some people like him while others not – some will beat him – despise him – hurt him while others love him. So play works for him depending on the type of people surrounding him, if there are good people it works for him but if not then it doesn’t work for him.

Many carers specifically expressed their concerns about environmental harm as a barrier to play for their children with VI. The physical environment outside of the home is often fraught with danger with harmful objects and discarded rubbish lying on the ground. Carers did not feel comfortable with the child’s immediate surroundings, and so this had an impact on the child’s ability to explore and socialize with other children. They felt constant fear and worry about what might happen to their child while they are away: ‘For she is blind she might fall onto fire, or may be she will be hit by a car or even a bike, so you as a parent you are tied up.’ The burden of the daily routines and responsibilities was a main area of concern for all carers. The constant requirements for some families to search or work for food was clearly paramount. For many, playing with their child came much further down the list of priorities and was considered almost as a luxury. This was more prominent in rural communities than in urban communities. One mother had to leave her child with friends – sleeping on a mat – so that she can go to work in the field: ‘I leave him on the mat in the morning with his friends when I am gone to the field so I do not know what time he wakes up.’ Many carers described the many other responsibilities that they had to deal with and how time pressures meant it was often difficult to spare the time to play, communicate and stimulate a child, particularly one with an additional disability. One carer describes the constant demands of supporting a child who has multiple impairments: I have to pick some toys for her when she has lost it because most of the times, it is difficult for her to find or reach it and that disturbs my work at home because it means that I have to be there always for her.

Professionals/organizations indirectly influencing processes through the exosystem Much of the system at this level is influenced by policies and models set out and implemented at the macrosystem level. There is sometimes a blurring of this system with the exosystem in terms of responsibility and ownership. Families of children with VI (and potentially those with other disabilities) often move seamlessly between the exo- and mesosystems without knowing which authority or organization is responsible for the intervention or advice they have received. This is partly due to the way the Malawi government has grouped departments within ministries and partly to the way district authorities are organized and how they publicize their ECD services. The study found that there was better coordination between departments within urban and periurban areas of a district. Chikwawa is completely rural and has fewer early childhood services which are usually coordinated from the main city, Blantyre.

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Governmental policies, structural factors and culture through the macrosystem There are a number of policies in place that address the issues facing many families who have children with disabilities, but few become fully operationalized and scaled up to all districts within Malawi. Most often, rural districts in the southern and northern regions of the country are the least served by well-coordinated ECD services. Carers in Chikwawa district found it the most difficult to access the medical and social services they needed for their children. The lack of understanding about the disability a child had and the possible consequences of the disability in the child’s life as they get older was particularly worrying for the parents and the communities they lived in. This issue will be discussed further in the final discussion of this chapter.

Considerations for new carer training programme The data generated in stage one helped us to identify a number of important themes around ‘barriers’ and ‘facilitators’ to enable support for young children with VI and their families, not just at the child level but also at the parent-child (microsystem) level and the mesosystem and exosystem levels where the community response and support from well-trained professionals are critical. Table 12.1 provides an outline of how the key messages and themes were taken into account when creating a training programme for children with VI in stage two of the study.

Stage two: Adaptation and development of a training package for parents and community workers This section discusses the development of the training package which was piloted for six months with thirty children with VI and their families. The extensive qualitative collected testimonies from the families who spoke openly about their own fears, experiences and expectations of raising a child with a disability fed into the training programme which was targeted at the recruited community workers from the three districts. In preparing and adapting the materials, we integrated key areas that benefit all babies and young children with VI (e.g. accommodating for difficulties in social behaviour, joint referencing and early communication) in line with acceptable cultural practices (Cole, 1996). Materials recommended for parents and community workers drew on several existing training tools (Dale and Salt, 2010; Jennings, 2009; Nieman & Jacob, 2000) as well as the Malawi Development Assessment Tool (MDAT) in order to align developmental activities with milestones considered appropriate in the Malawian context (Gladstone et al., 2010). High-quality line drawings of culturally appropriate mothers, family members, children with VI and play objects were created (see Figure 12.1). The training was based on the child primarily having a VI with activities to develop tactile skills and functional vision. This training package was based on the UNICEF/WHO Care for Child Development training which is aimed at supporting families to care for their children

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Table 12.1 Key messages to consider when developing a training programme for carers of children with visual impairment Focus

Sub-theme

Consideration for programme

The child (Individual)

• Additional complex needs of children with VI • Specific medical needs of children with VI

• High numbers of children with VI have additional impairments; therefore need to consider how we can broaden the training of community workers and parents • Need for specific advice about why children with VI can be encouraged to participate in different activities • Including referral criteria in programme for children with medical needs

The family (Microsystem)

• Specific difficulties with communication and socioemotional development • Carer expectations for child • Lack of understanding and utility of play and child development • Carer’s well-being, responsibilities, need for food and concerns about child protection

• Advice in training for carers on how best to respond to their children’s needs through improving methods of communication, behaviour and self-regulation • Advice that children with VI can develop if encouraged to play, communicate and interact • Advice that joint interaction and shared discovery through play, communication and interaction can encourage development • Group support as well as home visits to be used as a method for improving carer’s well-being

Community (Mesosystem)

• Carers and community-based child centres (CBCC) • Safety and independence • Social stigma and expectations

• Empowering carers to seek health (rehabilitation) and education services for their children • Training of CBCC volunteers to help children with VI to be more independent • Training on rights-based approaches to help protect children with disabilities in communities – link to the UNCRPD

Professionals (Meso-/ exosystem)

• Lack of knowledge of childhood disability • Inadequate joined-up training and services at district and zonal level

• Training on the WHO/UNICEF programme with additional elements on VI • Additional training and advice for different cadres – health workers in paediatrics and eye health and schooling services

Policy (Macrosystem)

• Lack of specific policy on inclusion and rights • CBR model can provide helpful advice to communities • New ECD policy relies on significant support from NGO and donor sectors

• Training to cover parent-child rights to appropriate services • Integrating aspects of CBR into the training programme • Importance of highlighting disability policy and the CRPD

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and help them survive, grow and develop their full potential (WHO/UNICEF, 2012). Some modifications in the training were made for children with additional complex needs (e.g. placing a child with cerebral palsy in corner seat table to reduce slumping and to facilitate the child’s ability to grasp and play with objects). The training package consisted of sixteen separate counselling cards with eight play activities for different aged children (from birth to 3 years +) and eight cards with recommended communication activities. All carers were given the laminated cards which are ageappropriate (Figure 12.2) to keep and use at home as well as a small number of low-cost locally sourced toys to help them to perform agreed communication and play activities (e.g. a rattle to increase child’s ability to stretch out an arm and reach a toy). In order to test levels of acceptability of the training, we ran a pilot (feasibility study) over a six-month period (October 2013–March 2014) with twelve visits conducted to each of the recruited thirty children in the three selected districts. The fourteen community workers each supported one to three children with visits taking an average of one hour, mainly conducted in the home. Each visit consisted of the community worker sharing information about the child, discussing possible activities using the counselling cards, modelling the activity for the carer to see and then setting a small number of activities for the carer to try out between visits. We carried out interviews with twenty of the thirty carers of children as well as a focus group with six carers immediately after the pilot to support triangulation of the data from the interviews. A summary of the principal findings is presented in the next section.

Stage three: Understanding the perceptions of carers and community professionals relating to the main facilitators, barriers and acceptability of the training programme In this stage, we were interested in learning about which environments could act as ‘enablers’ to support the child at home and in the community. We also wanted to explore how these solutions could be further developed to attain greater change in both the child and the carer both directly and indirectly through the different levels of the ecological systems theory model (Figure 12.1).

Impact on the carer and child at microsystem As previously discussed in stage one, carers sometimes felt overwhelmed having a child with a disability and unable to respond to their child’s basic needs, including providing basic food and shelter and being able to seek appropriate medical treatment outside of their communities. After the six months training programme, many carers explained how they felt more confident about letting their children go out to play with peers. Having a VI was considered to be a substantial barrier for families prior to the community workers visits but after two or three visits, some were allowing their children to go out of the house and interact with their peers for short period of time. Some described how they felt better enabled to communicate and play with their children because of the support they had received from the community workers including introducing new activities based on their advice.

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Play: Babies who may not see well need extra help to understand and feel secure in their surroundings. You can provide ways for your baby to see, hear and touch you. One way to do this is to gently soothe, stroke and hold your child.

Communicate: Keep your baby near you when she is awake. Speak to her often to let her know you are near. She will learn to recognize your voice and respond to it.

Figure 12.2 An example of communication and play activities for carers to try with their children from birth to three months based on UNICEF/WHO Care for Child Development

Carers were able to find out better ways of understanding their children’s needs by changing the way they communicated with them. This was more difficult for carers of children who had additional needs. A carer of a 3-year-old child with VI and profound multiple disabilities was more interested in learning about strategies that could help her to better understand her child’s specific needs, particularly in relation to hunger, physical and emotional discomfort. One carer described how she learnt to stay closer to her baby girl so that she could respond to her crying, because others sitting close to her would not know why she was crying. Another said that she could tell when her child was hungry when she moved her head and pointed to her mother’s chest.

Impact of the training on the community (microsystem and mesosystem) Three of the carers said they made their own toys (e.g. a rattle, a doll stuffed with paper, a small throw-ball made out of foam). The community professionals also made toys for the children (e.g. a car made out of wire coat hangers). The toys provided the carers with a ‘stimulus’ for playing and communicating with their children. Most carers said that they were able to integrate the activities the community workers demonstrated to them on a regular basis while carrying out other household

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duties. There was a noticeable change in the behaviour of those children who are blind – showing a greater interest in searching for and exploring objects and toys in a dedicated ‘treasure’ basket that was located in the same part of the house (usually on the floor near the sleeping area of the home). Children who had been introduced to this basket were reported to show more motivation to move around and explore the basket and their immediate environment.

Impact on the community through mesosystem/exosystem The visits from community workers resulted in forming better relationships not just with the carer and child but with their community by using the first visit to encourage carers to show their children to the community and greet visitors when they passed by or entered the home. This seems to have opened new windows of opportunity for social inclusion where carers can lessen their hold on the child and allow the community to engage with the child. A carer described how she was encouraged and enabled to include neighbours in helping to look after her child. Another was able to see tangible results, thanks to the community worker visiting the home: ‘The relationship between the child and community has improved. More children are coming to play with her. It has become “an eye opener” to the community. Other children are coming and bringing toys to the home.’ In spite of the counselling by community workers, some carers did not feel confident enough to leave their child with another carer because of their specific needs (e.g. regular feeding, difficulties managing crying and general physical discomfort that required regular attending to). This lack of multiple caring also had an influence on the choices they made when deciding on whether to enrol their children into a community-based child centre (CBCC) or the local primary school. Through the training, some were encouraged to start bringing their children to local CBCCs so they would be able to see how their children could interact with toys and in-group activities with other children. Carers who were previously reluctant to involve family and community members, because they were worried about safety and protection of their children, felt more confident about allowing their children to play outside of the home, including the local CBCC. Those of older children who were at the age to go to CBCC (normally at the age of 3 years) or to primary school (6 years) were thinking more positively about the future of their children’s lives. Some described how they had changed their attitude towards the future of their child. They could see how the training helped them to understand how they can stimulate their child at home. There was some concern among parents that schools were unable to support their children’s learning needs, and there was a general lack of knowledge about the role of specialist teachers and how they can support children with disabilities with regard to their transition from home to (pre)school. In a very small number of cases, specialist teachers were able to provide advice to parents about how their child can learn Braille if learning through this medium is required. Finally, carers and children reported a benefit to our programme at the microsystem level and made it clear how much more supported they felt when speaking to health

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workers or other professionals. They also felt they could better share their personal experiences and concerns with these professionals and ask for their help.

Final discussion This study identified areas where much needs to be achieved (at micro-macrosystem levels) to support children with disabilities and their families. For instance, it showed how critical it is for the training programme to be meaningful to carers and to fit into their busy daily routine (e.g. running a household). They were more likely to integrate activities that fitted more to their daily routine such as preparing food, cleaning and carrying water. The introduction of unpredictable changes in caring and stimulatory practices could have a negative impact on the carers and on trying to engage other family members to help look after the child. Carers found it easier to integrate some activities into their daily routine, particularly communication activities such as singing songs or talking to their child as they carried out different household chores. The findings suggested that emotional and physical enablement were inextricably connected for carers. The child’s personal space was often their own home, but it was the outdoor spaces which were described by parents as being the place where children can access new sensory experiences which are more likely to lead them to build appropriate concepts of the social and physical world. The training programme encouraged parents to spend more time communicating and playing with their children where they see their children as equal and capable of doing the similar activities as ‘non-disabled’ children rather than as unequal (e.g. ‘helpless and defenceless’). Carers need to feel empowered to be able to support their children with disabilities (Yousafzai et al., 2011), but to do this they require basic resources (food, security and shelter) and positive mental health. Carers’ lives are busy and daily family routines can be burdensome. In the case of this study, many families worked in farming and needed to spend long hours in the fields during the harvest season. It can be challenging to integrate additional activities during these busy periods for all families. Potentially, a programme which advocates regular visits from support staff, counselling and expectations for carers to provide even more time for their children with disabilities could be disruptive on existing family arrangements and could increase parental stress levels. It is clear that the wider mesosystem and exosystem within a community are crucial for supporting families in nurturing and encouraging their young children with disabilities. This includes providing safe environments for children who may be supported in community centres. The ecological systems theory has served as a very useful framework to organize the environmental factors and understand their influence on inclusivity by placing the learner at the centre (Anderson et al., 2014.) Conceptualizing the developing child at the centre of the framework therefore serves to emphasize the importance of recognizing individual needs and of ensuring that as far as possible, the young child with a disability becomes an ‘active’ participant in their development and deciding on what they want to do.

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While the exosystem is considered to be outside of the child’s direct agency, it has implications in the context of a broader ecological framework, given that it includes, for example, knowing about child protection issues and who to speak to when parents or other members of the community have a concern. The macrosystem level should be able to provide the drive for the ECD sector to function correctly at all levels, making sure that all children have access to critical health, education and child services. However, this is difficult to achieve when there is a strong dependency by a government on outside agencies to take the lead and ownership of some services. There are policy implications in and around human resource capacity in education, health and social welfare to respond to the basic needs of young children with disabilities, and their families, particularly in rural areas where there can be considerable problems recruiting and maintaining community workers, especially specialist teachers or government community workers. CBR volunteers have a strong intrinsic interest to provide (re) habilitative support to people with disabilities but do not always have basic training in ECD and disability. The current and foreseeable situation of chronic under-sourcing of human resources for ECD relies on individual good will, knowledge and availability of services. Such heavy reliance on individual and NGO support is unsustainable and without substantial commitment at national and international levels.

Conclusion In this chapter, we have drawn on a study to demonstrate that there are different influences acting on the development of the child with VI at and between all levels of the ecological system. Training requirements are necessary at all levels in order to produce meaningful and appropriate programmes to support nutrition, care and early stimulation for children with VI and other disabilities in Malawi and in similar African settings. Training programmes are needed at the level of the child and carer (microsystem) in supporting carers to understand their child’s medical needs and how to better communicate with, nourish and stimulate their child – offering advice which is sensitive to carer’s responsibilities (mesosystem) but also in enhanced professional training to better support these carers, to provide safe places for these children and to challenge community stigma at the level of the community (exosystem). With high levels of disability in children in sub-Saharan Africa (WHO, 2012), it is vital to develop and test programmes that are tailored to the needs of these children and particularly those who can be integrated into mainstream ECD programmes using an equity-based approach. Non-specialists need to have the requisite skills to deliver the interventions needed to help children with disabilities to reach their full physical, cognitive, psychological and emotional potential. National policies emphasize the need for different sectoral departments and ministries to work together at community, district and national level in collaboration with the support from key organizations working in this sector (WHO and UNICEF) at country and global levels. This study has been able to demonstrate that by engaging with community support workers from a variety of cadres to provide interagency ECD collaboration to the families with disabilities, it is possible to offer basic support to families with children with VI at

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community level. Some of these solutions do not require specific policy changes but do need local communities and services to be committed to seeking workable solutions which are culturally relevant and will make a difference to the lives of families who have children with disabilities. While carers and communities are able to make small changes to increase their resilience against barriers in raising a child with disability, it is still clear that timely interventions for these children can make a difference so that they can thrive and transform.

Summary of key points ●

●

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The involvement of the family as partners in the (re)habilitation process of children with disabilities is important for the achievement of successful outcomes for the child. Visits from community workers resulted in forming better relationships not just with the carer and child but with their communities. The training programme encouraged parents to spend more time communicating and playing with their children where they see their children as equal and capable of doing the similar activities as ‘non-disabled’ children.

Suggested questions for discussion 1. What are the key challenges to accessing high-quality ECD experiences for children with disabilities and how can they be tackled? 2. How can ministries, which have responsibility for ECD as a whole, develop and support the training and supervision of workers in education, health and social welfare to work together on providing high-quality ECD to children with disabilities? 3. How can ministries responsible for ECD work with non-government organizations and donor agencies to increase the effectiveness of inclusive ECD programmes for children with disabilities?

References Anderson, J., Boyle, C., & Deppeler, J. (2014). The ecology of inclusive education: Reconceptualising Bronfenbrenner. In H. Zhang, P. Wing, K. Chan, & C. Boyle (Eds.), Equality in Education: Fairness and Inclusion (pp. 23–34). Rotterdam: Sense. Black, M. M., Walker, S. P., Fernald, L. C. H. et al. (2017). Early childhood development coming of age: Science through the life course. The Lancet, 389(10064), 77–90. Available online: http://dx.doi.org/10.1016/S0140-6736(16)31389-7 Blatchford, I. & Woodhead, M. (2009). Effective early childhood programme. In Early Childhood in Focus 4. UK: OU. Bronfenbrenner, U. (1994). Ecological models of human development. In International Encyclopedia of Education, vol. 3 (pp. 1643–1647). Oxford: Elsevier. Bronfenbrenner, U. (2005). Making Human Beings Human: Bioecological Perspectives on Human Development. Thousand Oaks, CA: Sage.

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Cass, H. D., Sonksen, P. M., & McConachie (1994). HR: Developmental setback in severe visual impairment. Archives of Disease in Childhood, 70, 192–196. Cole, M. (1996). Cultural Psychology: A Once and Future Discipline. Cambridge, MA: Harvard University Press. Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2008). Developing and evaluating complex interventions: The new Medical Research Council guidance. BMJ. doi:10.1136/bmj.a1655. Dale, N. & Salt, A. (2010). Early support developmental journal for children with visual impairment: The case of a new developmental framework for early intervention. Child Care Health and Development, 10:33(6), 684–690. Dale, N. & Sonksen, P. (2002). Developmental outcome, including setback, in young children with severe visual impairment. Developmental Medicine and Child Neurology, 44, 613–622. Ferrell, K. A. & Muir, D. W. (1996). A call to end vision stimulation training. Journal of Visual Impairment and Blindness, 9, 101–103. Gladstone, M., Lancaster, G. A., Umar, E., Nyirenda, M., Kayira, E., & Van Den Broek, N. R. (2010). The Malawi Development Assessment Tool (MDAT); the creation, validation and reliability of a tool to assess child development in rural African settings. PLOS Medicine, 7(5), e1000273. Gladstone, M., Lynch, P., McLinden, M., Douglas, G., Jolley, E., Schmidt, E., Magombo, H., & Chimoyo, J. (2017). ‘Maybe I will give some help … maybe not to help the eyes but different help’: An analysis of care and support of children with visual impairment in community settings in Malawi. Available online: http://onlinelibrary.wiley.com/ doi/10.1111/cch.12462/full Gona, J. K., Mung’ala-Odera, V., Newton, C. R., & Hartley, S. (2011). Caring for children with disabilities in Kilifi, Kenya: What is the carer’s experience? Child Care Health Development, 37, 175–183. Green, J., Charman, T., McConachie, H., Aldred, C., Slonims, V., Howlin, P., ... & Barrett, B. (2010). Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial. The Lancet, 375(9732), 2152–2160. Heyman, J., Earle, A., Rajaraman, D., Miller, C., & Bogen, K. (2007). Extended family caring for children orphaned by AIDS: Balancing essential work and caregiving in high HIV prevalence nations. AIDS Care, 19(3), 337–345. International Centre for Evidence in Disability (2014). The Malawi Key Informant Child Disability Project – Summary Report. London School of Hygiene and Tropical Medicine. Jennings, J. (2009). Including Children with Visual Difficulties in the Foundation Stage. London: RNIB. Kalua, K., Patel, D., Muhit, M., & Courtright, P. (2008). Causes of blindness among children identified through village key informants in Malawi. Canadian Journal of Ophtalmology, 43(47), 425–427. Kelly, A., Ghalaieny, T., & Devit, C. (2012). A pilot study of early intervention for families with children with or at risk of an intellectual disability in Northern Malawi. Journal of Policy and Practice in Intellectual Disabilities, 9, 195–205. Malawi Government (2016). National CBR Model. Lilongwe, Malawi. McConachie, H., Huq, S., Munir, S., Nahar, K., Akhter, N., Ferdous, S., & Khan, N. Z. (2001). Difficulties for mothers in using an early intervention service for children with cerebral palsy in Bangladesh. Child Health Care Development, 27, 1–11.

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Mobarak, R., Khan, N. Z., Munir, S., Zamna, S. S., & McConachie, H. (2000). Predictors of stress in mothers of children with cerebral palsy in Bangladesh. Journal of Paediatric Psychology, 25, 427–433. Mushi, D., Burton, K., Mtuya, C., Gona, J. K., Walker, R., & Newton, C. R. (2012). Perceptions, social life, treatment and education gap of Tanzanian children with epilepsy: A community-based study. Epilepsy and Behaviour, 23, 224–229. Niemann, S. & Jacob, N. (2000). Helping Children Who Are Blind: Family and Community Support for Children with Vision Problems. Berkeley, CA: Hesperian Foundation. PovcalNet (2015). The World Bank. Available online: http://iresearch.worldbank.org/ PovcalNet/povOnDemand.aspx Roberts, J., Williams, K., Carter, M., Evans, D., Parmenter, T., Silove, N., Clark, T., & Warren, A. (2011). A randomised controlled trial of two early intervention programs for young children with autism: Centre-based with parent program and home-based. Research in Autism Spectrum Disorders, 5, 1553–1566. Sonksen, P. & Stiff, B. (1991). Show Me What My Friends Can See: A Developmental Guide for Parents of Babies with Severely Impaired Sight and Their Professional Advisors. London: Institute of Child Health. Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. The International Journal for Quality in Health Care, 19(6), 349–357. United Nations (2014). The 2030 Agenda for sustainable development. Available online: https://sustainabledevelopment.un.org/sdgs WHO/UNICEF (2012). Care for Child Development: Improving the Care for Young Children (Ed.). Geneva: World Health Organization. New York: United Nations Children’s Fund. Yousafzai, A. K., Farrukh, Z., & Khan, K. (2011). A source of strength and empowerment? An exploration of the influence of disabled children on the lives of their mothers in Karachi, Pakistan. Disabil Rehabil, 33(12), 989–998. PMID: 20874447. Yousafzai, A. K., Lynch, P., & Gladstone, M. (2014). Moving beyond prevalence studies: Screening and interventions for children with disabilities in low-income and middleincome countries. Archives of Disease in Childhood, 99(9), 840–848. doi:10.1136/ archdischild-2012-302066.

Acknowledgements The authors would like to thank all the collaborative research partners, Sightsavers in the UK and Montfort Special Needs Education College in Malawi, and give a special thanks to the families and children who gave their precious time to participate in the study. We would like to acknowledge the financial support of Sightsavers UK who received funding for this study from the Department of International Development Strategic Fund. We would also like to acknowledge the support from Montfort School for Special Needs Teachers who provided the infrastructure to make this project possible, and we would like to thank the carers, children, itinerant teachers and community-based rehabilitation workers who took part in this study.

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Inclusive Education for Learners with Albinism: Malawi, Zambia and Botswana Gareth Dart (University of Worcester), Yonah Matemba (University of the West of Scotland) and Jack Gunnell (University of Bristol)

Introduction During a recent visit to Lusaka, Zambia, one of the authors experienced the following: while driving to one of the new, modern shopping malls that are mushrooming across the city, he got caught in heavy, slow traffic on a busy intersection approaching the mall. The crossroads attract dozens of young men and women with a variety of wares for sale, who weave in and out of the traffic plying for trade with the becalmed motorists. One young lad’s albinism meant that he stood out from the rest. A role that is perilous for any trader is doubly so for him, and he made no concessions for his condition. No cap, no long sleeves (and almost certainly no costly sunblock), he laboured exposed to the relentless sun desperately trying to earn a few Kwacha for life’s basics. Some minutes later, freed from the traffic and now in the cool, gleaming halls of the air-conditioned mall, the author spied a young woman with albinism dressed in good quality, loosefitting clothes, chatting and waiting with her friends to go into the cinema, looking at ease with herself and a comfortable modernity. What separates these two young people is extremes of wealth, and in this, they illustrate a common feature of many developing countries: one thing that they share in common is the condition of albinism. This chapter draws data from two complementary studies in southern Africa: one encompassing Malawi and Zambia, the other Botswana. It begins with a brief discussion of the nature of albinism and traditional beliefs about albinism. It then explores some of the challenges that people with this condition face in the southern Africa context with a particular emphasis on educational experience. Next, it discusses relevant international and national policies regarding inclusive education in the three countries under study. It then gives an overview of inclusive education in Initial Teacher Education (ITE) and in schools in sub-Saharan Africa as conceptualized in the research. Using data from the complementary studies, the chapter moves on to explore insights from people with albinism, their families, teachers and teacher educators as

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to how the needs of learners with albinism can be better met. In conclusion, ideas for further consideration for more effective inclusive education are suggested.

Albinism and the contextual factors that prejudice people with albinism in sub-Saharan Africa Oculocutaneous type 2 albinism is an inherited condition. Little or sometimes no melanin pigment is produced in the skin, hair and eyes. In the African context, those with albinism have pale skin, blue eyes and sandy-coloured hair (Lund, 2005). These are very visible differences of appearance in a black population (Blakenburg, 2000). The lack of pigment gives rise to a range of visual impairments including photophobia, rapid eye movements, poor visual acuity, squinting and refractive errors that result in low vision. People with albinism are hypersensitive to the damaging effects of the sun and are prone to suffer sunburn, skin lesions and skin thickening (Lund & Taylor, 2008), which gives rise to an increased chance of skin cancer at a young age. In Africa most infants with albinism are born to parents who are both black. In these cases both the father and the mother carry the ‘albinism’ gene, and there is a 25 per cent chance of them producing a baby with albinism. In sub-Saharan Africa the frequency of albinism in populations is relatively high. Hong, Zabeed, and Repacholi (2006) report that across Africa as a whole approximately 1 in 5,000 people have albinism but the rate varies greatly between countries. With appropriate resources, eye and skin care issues can be managed successfully (Hong et al., 2006). However, it is still difficult to obtain a regular and affordable supply of sunblock in many parts of sub-Saharan Africa, so strategies need to be focused on the use of simple, appropriate clothing and the avoidance of direct sunlight, particularly during the hotter parts of the day. Societal attitudes in sub-Saharan Africa often engender social stigma and ostracism that impact negatively on individuals with albinism and their families throughout their lives and can be more difficult to address than the physical challenges (Braathen & Ingstad, 2006; Broco, 2015; Lund & Gaigher, 2002). Various mistaken beliefs arising out of ignorance of the condition (e.g. that the condition is contagious or that it can be ‘caught’, or those with albinism have been bewitched) continue to mean that many people with albinism find themselves marginalized in society (Baker et al., 2010). Researching in a particular region in Tanzania characterized by poverty and poor communications, Broco (2015) found that these understandings and beliefs are difficult to shift, even in a context where concerted attempts are made to provide good quality information. Thus, the socio-cultural context in sub-Saharan Africa illuminates particular challenges concerning disability, and by implication how far ITE and schools are able to facilitate inclusive practices (see Garuba, 2003; Sefa Dei, 2005). As Engelbrecht et al. (2013) have highlighted, one of the key challenges to inclusive education in sub-Saharan Africa has to do with the fact that education authorities tend to ‘focus on demographic factors and professional practices that are based on the individual … at the expense of analyses of historical and contextual factors, as well as developments in wider social contexts’ (p. 307). Focusing on these contextual realities imbricated by cultural, social and historical factors illuminates African conceptions of and engagement with disability ‘associated with an element of fear and negativity’ (Braathen & Ingstad, 2006, p. 599) about people

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with disability in general. For people with albinism, in particular, there are myths that sexual intercourse with them can cure AIDS (Baker, 2011). Of particular concern is the prevalence of ritual killings of people with albinism in some countries (e.g. Tanzania, Mozambique, Malawi, Zambia and Burundi) based on the false belief that their body parts – mixed with traditional medicine – bring good luck and wealth (see Baker et al., 2010; Braathen & Ingstad, 2006; Burke, Kaijage, & John-Langba, 2014). Such has been the international outcry against such practices that in June 2013, a UN Resolution recognized the specific rights of people with albinism to protection from harm and to inclusion in society (HRC, 2013). To conclude, Botswana, Malawi and Zambia share many of such cultural characteristics that work towards stigmatizing people with albinism in society. Such attitudes are cited as significant barriers to inclusive education, as are many of the traditional stereotypes of disability which still exist in many communities (Chavuta et al., 2008), often resulting in individuals being ostracized from society.

Supranational and national policies for inclusive education in Malawi, Botswana and Zambia The 1990s saw an unprecedented shift towards inclusive education at an international level, prompting successive declarations and statements to enshrine the notion of ‘education for all’ (EFA) across the global educational community. Prior to 1990, conventions such as the Universal Declaration of Human Rights (United Nations, 1948) and more recently the United Nations Convention on the Rights of the Child (United Nations, 1989) established precedence for a non-discriminatory and equal society in which the basic human rights of individuals were set forth, including the right to education. However, although the majority of the global community were signatory to these conventions, including Botswana, Malawi and Zambia, inequalities within societies, especially in developing countries, prompted discussions around pedagogical and political shifts towards inclusive education for all learners. In 1990, the World Declaration on EFA in Jomtien sought to instil equality and universal education in all signatory nations under the banner of EFA (UNESCO, 1990). Along with signing the Jomtien Declaration (UNESCO, 1990), Botswana, Malawi and Zambia are also signatories to the Salamanca Statement in 1994 (UNESCO, 1994), which further reaffirmed their commitment to incorporate individuals with special educational needs (SEN) within the mainstream education system, Thus, at a political level, the great majority of nations provide at least some political recognition of their international commitments towards inclusion, including Botswana, Malawi and Zambia.

Botswana, Malawi and Zambia: The policy context In Botswana the net enrolment rate for learners at primary school level is approximately 91 per cent. It is 93 per cent in Malawi and 89 per cent in Zambia (UNESCO, 2014). There is no great discrepancy by gender in Botswana and Zambia; although in Malawi, there is a small bias towards males (UNICEF, 2016). There are no figures at a national

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level in any of the countries for enrolment rates of children with SEN and disabilities. A study of a large sample of adults with disabilities in Botswana (Mmatli & Seide, 2016) revealed that 40 per cent had never been to school. A study in Zambia revealed a similar figure at 57 per cent (SINTEF, 2006). These figures are higher than the findings in the Global Monitoring Report of 2012/2013 (UNESCO, 2014, p. 56) that ‘in 14 of 15 low and middle income countries, people of working age with disabilities were about one-third less likely to have completed primary school’. In the Malawian context, research (Loeb & Eide, 2003) showed that the people with disabilities were twice as likely not to have attended school as those without (35:18 per cent). There are no available statistics regarding school enrolment for people with albinism in any of the countries, although there is research in Malawi that clearly indicates that some children with albinism are not attending school mainly out of fear for their wellbeing (Lund et al., 2015). This provides ample evidence for the claim often made in the literature (e.g. UNICEF, 2013) that statistical data on prevalence of disability and the way that plays out in areas such as education is sorely lacking. Official documentation in each country uses the phrases Special Educational Needs (SEN) and Special Needs Education (SNE) (Botswana Government, 2011; Malawi Government, 2013; National Assembly of Zambia, 2011). The documentation defines the terminology in the following ways: Children, young people and adults are defined as having special educational needs if they need services which are over and above what is generally provided as standard in the education system. ● ●

● ● ● ● ●

Special educational needs may result from, for example: being from a very poor or deprived background or vulnerable or marginalised social group; living in isolated circumstances; not being fluent in the language of instruction in school; having a developmental delay; having a disability; having emotional and behavioural difficulties; or from living a life that has been disrupted by distressing or tragic circumstances (Botswana Government, 2011, p. 3)

A system for providing a conducive learning environment for learners who may require extra support in order to achieve maximum potential (Malawi Government, 2013, p. vi). … ‘learner with special education needs’ means a learner who – a. has physical, hearing, speech, visual or mental impairment; b. is significantly different from other learners mentally; c. has social, emotional or behavioural disorders as certified by a medical practitioner or prescribed officer; or d. is gifted and talented. (National Assembly of Zambia, 2011, p. 427)

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All three statements have the potential for teachers and other professionals to call upon as they seek to provide appropriate support for learners with albinism. However, it can be argued that the Malawian and Botswanan expressions are closer to an ‘inclusive’ philosophy of special education as they explicitly recognize that a learner might have needs arising from a very broad range of exclusionary processes.

Botswana Following ratification of the Jomtien Declaration (UNESCO, 1990) and the Salamanca Statement (UNESCO, 1994), the introduction of the Revisited National Policy on Education in 1994 (Government of Botswana, 1994) marked the first provision for SEN within the public education system. This shifted the responsibility of special education onto the Botswana government and away from a number of non-governmental organizations that had previously been the sole providers (Chhabra, Srivastava, & Srivastava, 2009). Other supranational policies that influence Botswanan national policy include the Dakar Framework of Action (UNESCO, 2000) under which the government is committed to providing an education for every member of society, with specific emphasis on the vulnerable and disadvantaged. In addition, the Children’s Act 2009 (Government of Botswana, 2009) draws considerable inspiration from the Convention of the Rights of the Child (United Nations, 1989) in which, notably, Section 18 establishes the rights of all children to free and basic education (Jonas, 2014). In contemporary legislation, the Inclusive Education Policy 2011 (Botswana Government, 2011) emphasizes Botswana’s international commitments towards inclusive education and presents goals for its successful implementation at national, district and school level. Specifically, policy goals 2 and 5 emphasize the importance of teacher training, the effective distribution of resources and strong cohesion between governmental, non-governmental and private organizations. Although the policy attempts to provide a plan of implementation in response to much of the supranational and national inclusive educational discourse, Mukhopadhyay (2014) critiques it for its ambiguity and sometimes contradictory inclusive educational goals. For example in goal 3, plans are established to develop out-of-school education centres which contradict the notions of inclusive education and may offer opportunities for lower performing or marginalized groups to be removed from mainstream education. In addition, Jonas (2014) notes that poor governmental guidance and a lack of accountability has resulted in ineffective policy implementation at the school level. Mukhopadhyay (2014) supports this, stating that ineffective policy implementation strategies have left schools oversubscribed, underfunded, under-resourced and lacking effective knowledge of inclusive educational practices. As demonstrated towards the close of this chapter, such (often simple) practices are crucial if learners with albinism are to experience meaningful inclusion. Moreover, Otukile-Mongwaketse (2011) emphasizes the need for improvements in the inclusive educational aspects of teacher training, both as part of pre-service and in-service training (see following section for further discussion). Jonas (2014) also posits that some legislation is inconsistent with international law, and therefore many key educational documents lack effective provisions for SEN provision and inclusive education at school level.

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Malawi In the National Education Policy 2013 (Malawi Government, 2013), Malawi aligned itself with the goals and educational practices established in the Jomtien and Dakar declarations (UNESCO, 1990, 2000), as well as the MDGs (United Nations, 2015). However, despite this adherence to its supranational commitments at a political level, Malawi is yet to meet its international commitments to universal education: the 97 per cent primary enrolment rate results in a 74 per cent primary completion rate (EPDC, 2014), thereby highlighting concerns over the retention of students. Furthermore, Kamchedzera (2010) emphasizes that more national provisions need to be established for inclusive education at a secondary school level, in order to progress the development of marginalized groups beyond basic education. EFA initiatives have resulted in extreme pressure on secondary schools that have been unable to grow at the same rate as the primary education system. Chazema and O’Meara (2011) further these criticisms in relation to the National Education Strategic Plan 2008–2017, noting that, despite the policy’s proposals to increase primary teacher graduates from 2,400 in 2007 to 4,000 in 2012, in reality Malawi has struggled to meet the demands placed on the primary sector by EFA, let alone develop teachers at a secondary school level. The Special Needs Education Policy 2007 (Malawi Government, 2007) and the Disability Act 2012 (Malawi Government, 2012) have both worked to enshrine the rights of individuals with disabilities to access education. However, despite the presence of the Department of Disability within the Ministry of Disability, Children, Disability and Social Welfare, which should monitor violations of the rights of individuals with disabilities, Chilemba (2014) argues there is still a lack of effective representation at a national level to ensure the protection and inclusion of marginalized communities into society. This is particularly pertinent to individuals with albinism whose right to basic safety from attack is violated as pointed out by the Association for Persons with Albinism in Malawi (Magombo-Mana, 2016).

Zambia Following ratification of the Jomtien and Salamanca declarations (UNESCO, 1990, 1994), Zambia’s ‘Educating our Future’ 1996 national policy on education (Government of Zambia, 1996) enshrined the supranational EFA goals into the Zambian education system (UNESCO, 2015). The policy promoted the inclusion of all marginalized learners into mainstream education with exceptions in only severe circumstances, thereby aiming to eliminate educational disadvantage based on gender, physical, mental, economic or social factors (Serpell & Jere-Folotiya, 2011). UNESCO (2015) has praised the Zambia education system for increasing net enrolment in basic education from 71 per cent in 1999 to over 97 per cent in 2013. This success is largely attributed to successive inclusive educational and societal policies, including the Persons with Disability Act 2012 (National Assembly of Zambia, 2012), which established penalties for educational institutions that refuse entry for students based on their disabilities, and the Education Act 2011 (National Assembly of Zambia, 2011), which reaffirmed the notions of inclusive education and EFA. This act also guides the education

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sector in formative actions to support students with SEN, including improvements in identification, diagnosis and assessments, as well as reiterating the notions that all learners with SEN should be included to the greatest possible extent in the mainstream education system (UNESCO, 2016). Although there has been little specific research on students with albinism, it was certainly true recently that many were still being educated in special units for the visually impaired which considering the low level of specialist intervention needed for them would indicate that these policy goals are yet to be firmly embedded in practice (Lynch, Lund, & Massah 2014). Akakandelwa and Musanje (2011) demonstrate that there are still disparities in access to quality education of some marginalized groups; in particular, visually impaired students, a group that includes all learners with albinism. Despite the role of District Assessment Teams, consisting of Primary School Teachers, Medical Assistants and Community Development Assistants, working within areas of Zambia to support the local community and schools (Serpell & Jere-Folotiya, 2011), UNESCO (2016) states that ineffective provisions, as well as inadequate funding, have resulted in poor policy implementation at a school level. In essence, although the Zambian education system can demonstrate strides it has made towards inclusive education, it is clear that many of the same inclusive educational problems cited across many sub-Saharan African countries are also present in Zambia. Despite this, in the nations under discussion, the drive towards inclusive education has been shown to be firmly embedded at a policy level with some clear developments at the operational level.

Teacher education and the development of inclusive schooling in sub-Saharan Africa Statistics regarding school access for children with disabilities in sub-Saharan Africa highlight a sobering reality. UNESCO estimates that only 10 per cent of disabled children and young people in sub-Saharan Africa attend primary school (UNESCO, 2014). While the country studies for Botswana, Malawi and Zambia discussed earlier appear to reveal a rosier picture, the reality is that in sub-Saharan Africa access to education for children with disabilities is woefully limited (see Ametepee & Anastasiou, 2015; Donohue & Bornman, 2014). There are no specific figures for attendance rates of learners with albinism but there does seem to be evidence (such as that discussed in the research later in the chapter) that some learners dip in and out of formal education provision or leave before completion in the face of various challenges. Regarding teachers’ beliefs, it is reported that they generally find the experience of implementing inclusive practices in mainstream classrooms stressful (Nel et al., 2016). Part of the problem is that historically ITE in much of sub-Saharan Africa has focused on traditional approaches that place children with disability in separate classes thus limiting any meaningful interaction with such children (Engelbrecht et al., 2013; Donohue & Bornman, 2014). It is perhaps not surprising therefore – as a Botswana study has highlighted – that in mainstream schools where all children

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learn together, teachers prefer to have children with mild disability rather than those with profound disabling conditions in their classes (Mukhopadhyay, Nenty, & Abosi, 2012). Ametepee and Anastasiou (2015) and Rieser (2012) claim that generally attitudes and systems in Africa are not responsive to the needs of disabled children, and as such many learners are denied an opportunity for education. Reporting on education and albinism in Malawi, Lynch, Lund and Massah (2014) highlighted the inadequacy of support, lack of clear guidelines for teachers and the failure of ITE to integrate information on inclusive education. More generally, other issues hampering inclusive education in sub-Saharan Africa have been identified. These include a lack of systems and structures for identifying learners with special educational needs and failure of schools to develop protocols for tracking such learners (Mukhopadhyay, Nenty, & Abosi, 2012); the inability of teachers to devise, implement and monitor effective classroom interventions and strategies (Tchombe, nd); inadequate collaboration among various stakeholders (i.e. special needs educators, regular teachers and parents) to support effectively children with special needs (Mkandawire, Maphale, & Tseeke, 2016); traditional use of authoritarian approaches (instead of learner-centred pedagogies) of teaching as a key factor perpetuating exclusionary practices in schools because it hinders the ability of learners with SEN to access the curriculum (Otukile– Mongwaketse, 2011) and the lack of infrastructure (i.e. classroom space and physical access to school). In addition to the above is the problem of inadequate engagement with effective strategies to support the development of inclusive and special education skills for trainee teachers in general ITE. For example, in Botswana student teachers in general ITE receive SEN training although this is at basic level (Dart et al., 2010). In schools, teachers also receive ad hoc in-service training, but such initiatives have little influence on classroom practices (Mangope & Mukhopadhyay, 2015). Although progress is being made as almost all ITE in countries in the region now offer degree qualifications in SEN or Inclusive Education, there still remains a shortage of specialist teachers in SEN terms of teacher–student ratio across the educational sector (Mkandawire, Maphale, & Tseeke, 2016). A decade ago, the Malawi government set itself an ambitious goal of achieving a student–teacher ratio in SEN classrooms of 20:1 to 5:1 by 2015 (Itimu & Kopetz, 2008). However, this has proven difficult to achieve due to financial constraints and a lack of adequately qualified personnel. In sub-Saharan Africa, the school environment itself demands insensitive practices that can engender physical challenges, especially for children with albinism. In some instances, the insistence by schools that all children wear the standard school uniform, which sometimes means short-sleeves/shorts, presents physical problems for children with albinism whose skin is susceptible to sunlight (Braathen & Ingstad, 2006). As noted, people with albinism have poor vision and as such find it difficult to read materials on the blackboard if made or allowed to sit at the back of the class (Lynch, Lund, & Massah, 2014). Ignorance of the physical challenges faced by learners with albinism, such as poor eyesight and the need to manage their exposure to sun, compounds social problems and can lead to poor academic engagement and achievement (Dart et al., 2010; Lynch, Lund, & Massah, 2014).

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Developing practice in inclusive education in Malawi, Zambia and Botswana In this section of the chapter, we discuss two research initiatives that foreground the experiences of young people with albinism and their educational context in particular. It is based on opportunistic qualitative data from two separate but related studies occurring in the three countries at different times between 2010 and 2016. The first examined the findings of a double case study in Botswana (Dart et al., 2010). As well as highlighting challenges for the learners in question and simple responses to these, it demonstrates the potential for practical assessment activities for teachers in training to foster their skills in supporting children with a variety of additional needs (in this case, albinism). The second summarized the results of a project in Malawi that sought to capture the voices of people with albinism and close family members regarding what issues should be addressed in teacher training programmes concerning the appropriate support of learners with albinism (Lund, Massah, & Dart, 2014). The application of some of these ideas into the production of a radio drama and the development of teacher training materials for teacher educators in Malawi and Zambia are discussed. At the time of the case study in Botswana (Dart et al., 2010), trainee teachers at Molepolole College of Education spent ten weeks in years two and three of their course on placements in junior secondary schools across Botswana. All students had to engage with a practical assignment for their Introduction to special education course, part of which involved them identifying a pupil with some sort of extra support need, assessing the nature of that need and attempting to implement some simple interventions to improve the pupil’s engagement with learning and school. Two of the students who went on to co-author the published research (Chizwe and Kowa) independently identified two learners, one male, one female, with albinism in different, mainstream government junior secondary schools. Examination and independent coding of the data by Dart and Nkanotsang revealed four major themes and a variety of sub-themes that typified the experiences of the two learners. These are addressed in brief below. The first was teaching and learning. The experiences of these learners had a lot in common: low levels of achievement as evidenced by low scores for assignments and tests across all their subjects appeared to be the result of poor engagement in the classroom. Observations of the student teachers revealed that many staff at the schools had little or no understanding of the challenges to learning that albinism poses for students and therefore had not made even simple adjustments to take this into account. Instead, the learners were often harshly punished for their apparent lack of engagement in learning activities. For example, the male learner sometimes did not hand in his work, as he did not want to receive the negative feedback that he got from teachers. Neither of the schools had a school intervention team as required by policy in Botswana (Government of Botswana, 1994). A second clear theme to emerge was that of medical and health issues. Only the female learner had received an assessment for her visual impairment and received spectacles at the end of her primary school career. Visual impairment is a major challenge for people with albinism, and although there are simple interventions that

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can be made to alleviate some of the challenges caused by this, none were observed in these cases. This child’s problem was so severe because at times she cannot see even from the books, therefore this made her school work complicated, to be done well and on time … when it was too sunny she could not see properly even from the book. (Dart et al., 82)

Both learners came from poor families and there was no provision of sunblock for skin protection. This seemed to impact on the female learner in particular who was reported by the student teacher to have very red and blistered skin. There has been no further published research on albinism in Botswana since this, but many schools continue to struggle to implement basic interventions that a commitment to inclusive practice demands (Mangope & Mukhopadhyay, 2015). The third clear theme was that of social isolation. Student teacher observations and interviews revealed a picture of loneliness and few friendships at school. The girl was entirely isolated while the boy had a few friends who shared his characteristic of low academic performance. There did not appear to have been any systematic attempt at the schools to encourage greater social inclusion with the learners’ peers. Other learners actively excluded them both: Other students in class think that he is not like them. I think that this is due to being an albino. They despise him and they laugh at him when he is given tasks to perform in class … This makes him to be demoralised. (Dart et al., 83)

A final theme to emerge was the influence of family background. There was little communication between the families and school, although both families were keen for their children to do well and supported them as best as they could. Both families were poor and appeared to lack the knowledge of their children’s condition or of policy imperatives that would have allowed them to challenge the practices of the schools. The compounding impact of poverty and disability is widely recognized in the literature. Mitra, Posarac and Vick (2013, p. 2), for example, note that ‘stigma associated with a health condition may lead to activity limitations and participation restrictions given a particular social and cultural context, and such stigma might be worsened by the stigma associated with poverty’. One outstanding feature was the resilience of the two learners themselves, reinforced by the encouragement of their families: despite their historical and ongoing struggles with their education, they continued to battle through. Although these were two case studies and therefore not open to generalization, the findings came as no surprise to the fourth author (Nkanotsang), also a student at the college and now a teacher, who himself has albinism. In his view, these experiences would not be uncommon for learners with albinism and indeed he had experienced many of them during his school career which included a stage at primary school when he had withdrawn himself. He eventually returned after members of his family persuaded him to do so. The findings also mirror those of the few other studies from the region that exist (e.g. Lund, 2001; Lynch, Lund, & Massah, 2014).

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The second research initiative was developed as part of a project which ran between 2012 and 2014, entitled Integrating community and media networks to promote the educational inclusion of children and young people with albinism in Malawi and Zambia. It was managed through Coventry University and sponsored by Sightsavers in partnership with the Department for International Development, UK (Lund, Massah, & Dart, 2014). The two primary aims of the project were to inform the production of a radio drama addressing issues regarding the inclusion of learners with albinism for transmission in Malawi and the development of materials for embedding awareness of albinism at teacher training institutions in Malawi and Zambia. The reasons for the choice of these outputs were that radio is a common and frequently used media in Malawi (Creel et al., 2011), and previous studies had indicated the need to bolster the engagement of ITE regarding the issue of albinism (Lynch, Lund, & Massah, 2014). To help inform these outputs, eighteen interviews were conducted in Malawi with a range of participants affected by albinism: carers of children with albinism and adults and children with albinism (Lund, Massah, & Dart, 2014). The Association of People with Albinism in Malawi (APAM), Malawi Council for the Handicapped (MACOHA) and The Story Workshop in Blantyre were key and active partners in the project. Here the findings arising from the eighteen interviews are deliberated in brief before the two outputs (radio drama and teacher training materials) are described and discussed. Interviewees were identified from previous related studies and in collaboration with APAM. They were purposefully chosen to reflect a broad range of roles and experiences, including male and female, rural and urban settings, primary and secondary students, teachers, parents and guardians, and adults with albinism in professional jobs. Table 13.1 summarizes the sample. Table 13.1 Key characteristics of interviewees from central and southern regions of Malawi Female

Male

Total

Persons with albinism

6

4

10

Notes Four at school, one in tertiary education, one teacher, one deputy head, one subsistence farmer, two other professionals

Adults with experience of responsibility for relatives with albinism

6

2

8

Mother in paid employment (one child with albinism [CWA]), female subsistence farmer (1 CWA), two fathers at work (1 CWA each), grandparent (1 CWA), three mothers not in formal employment (one with 1 CWA, one with 2 CWA, one with 3 CWA)

Total

12

6

18

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Analysis of the interview transcripts revealed eight clear themes which are discussed briefly below with a short exemplar quote to illustrate each point (for a fuller discussion of the methodology and findings, the reader is referred to the full report). The first was that there was a deep feeling of acceptance of the birth of the baby with albinism within the immediate family even if the wider family unit or other members of the community viewed the event more problematically. (Female with albinism/subsistence farmer): In the community they say nzungu osauka (poor White person) or napwerere (one with pale skin) but I don’t take it seriously. I don’t just move in the village but am just here at home with my relatives. So they love me and support me.

Braathen and Ingstad (2006) reported similar findings in the Malawi context. This support echoes the response of the immediate families discussed in the Botswana case studies above. Nevertheless, albinism can cause great familial, social, economic and medical disruption in lives. The need to access extra resources to minimize the impact of the condition by already poor families (even simple, suitably protective clothing let alone sunblock) can be a major extra economic burden. (Mother of two children [of seven] with albinism): Life with my children has not been easy. If you can see them now they have sores and other skin problems because I cannot afford to buy the lotion. At some point a teacher … would bring me the lotion; this only happened for three months and it stopped.

Groce (2011, p. viii) notes that the links between poverty and disability are ‘complex and nuanced’, but generally households experiencing disability are often ‘significantly poorer, with fewer resources and more brittle support networks, than non-disabled individuals and households with no disabled members’. As described in the Botswana case studies, the sheer resilience of families and individuals was an outstanding feature of many accounts. (24-year-old female with albinism, attends secondary school): So things were bad with me and I decided to drop out from school but after I realised that I want to become someone in life then I continue with school because my wish is to pass my form 4 examinations and go to Kamuzu College of Nursing to become a nurse.

A number of interviewees highlighted the importance of support from key personnel in schools. (20-year-old male with albinism, attending secondary school): But others supported me in class, I could not see in front well so my friends could write notes for me or read on the board for me, others borrowed me their notebooks to copy notes at home … Teacher support at secondary school is there. They help me by telling me to wear a hat and also all the organization for my school fees … they ask different organizations to support me.

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The most effective outcomes seemed to be when, as above, both staff and fellow students acted in consort to offer appropriate (and often very simple) support. However, a key theme emerging from the interviews was that such support was often very fragile in nature: the scaffold disappears if the key teacher or head leaves. (Mother of two with albinism): In primary school the head teacher was very supportive and would empower other learners to take my children like any one of them. The challenge came when that head teacher passed away and then came another head teacher who showed no concern at all despite my efforts of trying to push him to address the boys’ concerns.

Thus, good practice has to become standard, institutionalized practice. The project is addressing this by targeting teacher trainers and the teacher training curriculum reflecting the claim that ‘Inclusive education training and continuous professional development need to be designed and delivered with inputs from diverse stakeholders, in particular community members and professionals with disabilities, to give a stronger sense of reality to teachers’ learning experiences’ (Lewis & Bagree, 2013, p. 4). It could be argued that the inclusion of students with albinism into schools is a litmus test for their readiness to engage in inclusive practice. The interviewees in this study demonstrated how just small changes went a long way to making learning accessible for students with albinism. That these simple ideas – whether they relate to teaching and learning or more general welfare, social and health issues – should become an integral part of ITE and ongoing professional development for teachers was emphasized by the participants. (17-year-old female with albinism, attending the University of Malawi): 1st message: pupils with albinism should not be exposed on sun. 2nd Teachers should know that a person with albinism has short sight. 3rd Teachers should know that a pupil with albinism is a human being like anyone else. The most important is point number 3 because the only difference is the skin colour so there is no reason for a pupil to be isolated, or mistreated at school.

The study participants were very clear as to the essential need for teachers with the necessary skills for implementing good quality educational practices. With regard to particular skills for inclusive teaching, Stubbs (2008, p. 44) notes that many resources, methods, etc. that are considered to be special ‘are often no more than good quality, child-focused methods. Every child needs their learning supported in a conducive environment’. In some areas of discussion there was a range of opinions; for example, should learners board at resource centres or attend the local school as day students? There was agreement though that this is a decision for the parents, not the government or education authorities. Differing views resulted from particular contextual circumstances. (Working mother of 4-year-old daughter with albinism): At any school provided it is close and not difficult to reach, like crossing roads. In that case maybe boarding is

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better because they stay at school. (Her daughter was almost run over crossing the road – interviewer’s comment).

This can be seen as a challenge to the notion of inclusive education and indeed discussions of a more pragmatic, needs-based approach are emerging, particularly in under-resourced contexts (Urwick & Elliot, 2010). With regard to the question ‘Should name-calling be addressed in the radio programme?’ there was clearly a unanimous response, for example: (Adult female, with albinism): Yes. When they say ‘napwerere’ it is totally rude; it is ‘something’ (not a person), a thing that is not matured; this name is not good for us. Always we are frustrated with this name … When they say napwerere in Chichewa they are saying something left to be matured … (A variety of meanings are ascribed to the word ‘napwerere’ – what they all have in common is a pejorative tone.)

In contrast, on the topic of whether myths regarding albinism should be specifically addressed, there was no clear consensus: (Mother of two children [of seven] with albinism): Yes because that’s how people will know and learn like the Azigogo (Old lady) who wanted to kill my child. How do we know maybe there are many of such Azigogos out there who may meet weak parents who can accept the killing of their children? (Male Deputy Head with albinism): The radio programme should not include the negative myths/stories because this will be like encouraging the nation/people to continue with their negative mind/attitudes towards albinism … the programme should inform the nation the positive information only.

This division of opinion came as a surprise to the researchers who had assumed that this would have been a key issue, and it highlights the need to explore very carefully the views of those who are the intended beneficiaries of various interventions and initiatives (Wickenden & Kembhavi-Tam, 2014). The data from this study was then used to support the development of a radio drama, ‘Love Builds’ (Nyirenda & Simbi, 2013). The story line involves a 9-year-old girl with albinism called Madalo and explores various challenges she encounters as she pursues her goal of education. The character of Zgambo, a new teacher at her school, helps her overcome the prejudice and misunderstandings that she faces at school and in wider society, demonstrating to teachers, the community and Madalo herself, how her needs can be addressed effectively. The broadcast received a great deal of positive feedback from general listeners when aired on various radio stations in Malawi and Zambia between November 2013 and April 2014. This was gleaned through phone calls and SMS messages to the broadcasting stations and questionnaires sent to key stakeholders, including people with a knowledge of living with albinism, those involved with the media as a profession and those who were involved in the initial study that helped generate the content

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(Lund, Massah, & Dart, 2014). It should be noted that although the feedback gained from the broadcasts was almost entirely positive in its nature, a formal study of any impact on societal attitudes in general terms has not been undertaken. A further five programmes of thirty minutes duration following Madalo’s character and introducing a series of other players were developed between 2014 and 2015. In each programme, key issues regarding albinism are addressed. These are also translated into Chichewa, one of the main languages in Malawi and eastern Zambia. The second outcome partly shaped by the initial study was a series of workshops undertaken at Muchinga College of Education, Malawi, and the Zambian Institute of Special Education in Lusaka. The workshops were deliberately interactive in nature, engaging the participants in using locally developed resources about albinism, first to explore the characteristics of the condition and then to develop a school lesson that was inclusive of a learner with albinism. Participants then considered the points at which such knowledge and activities could be integrated into syllabi and materials at the colleges of education. Feedback from the workshops indicated that the participants found the content and interactive methodology of the workshops to be of great benefit in terms of their knowledge of the condition of albinism. Participants also noted better understanding as to how to engage their students in exploring more inclusive education for learners with albinism and access and use locally appropriate materials (Lund, 2014). Material from these workshops and various other sources has been collated and organized into a toolkit, aimed at the context of sub-Saharan Africa that can be used at a variety of levels of teacher professional development. The toolkit includes information about albinism as a condition, case studies from the region, research about education and albinism and suggestions in the form of adaptable templates as to how these various materials can be used by teacher educators and others in a variety of ways with different groups of students and other professionals. This is freely available for use and adaptation at http://eprints.worc.ac.uk/3736/ (Dart & Lund, 2014).

Developing better inclusive practice International and national policy and legislation in Malawi, Zambia and Botswana provide a clear driver for more inclusive educational practice. In the case of learners with albinism, there is clear need for this to be pursued as a matter of urgency as people with albinism are still subject to discrimination, misunderstanding and on occasion mutilation and murder. Although the educational and social situation faced by learners with albinism in Malawi, Zambia and Botswana vary across and within the countries depending on the precise situation of each individual (note the reflection that commenced the chapter), there are some broad findings that can be applied. Many learners with albinism find themselves struggling to access the quality of education that their contemporaries enjoy. Some, particularly in Malawi, find themselves living fearfully in the light of an apparent increase in the number of attacks caused by the fact of their albinism. In all

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countries, many are the subject of social ostracization to various degrees. This can have a profound impact on their ability to access education at all levels. Their situation allows education providers an opportunity to develop better inclusive practice based on policy, psycho-social mediations and relatively simple educational interventions. Such practices offer a blueprint for improving inclusive practice for other excluded learners. Providers and other stakeholders should be aware of the policy environment in which they operate. As the chapter has demonstrated, all three countries are signatories to various international accords that support the active move towards more inclusive schooling. In each country, these have been translated in various degrees into national policy and legislation. Charities, national and international non-governmental organizations involved in supporting better education for learners with albinism should make themselves familiar with the local environment in terms of societal practices, and educational policy and practice. The analyses above demonstrate the importance of listening to the voices of those living with albinism when developing interventions designed to improve educational and social outcomes. The provision of simple, well-informed materials regarding albinism can support teacher educators in better preparing new and existing teachers in their roles as inclusive educators. At school level, managers should ensure that all members of staff are aware of their responsibilities under government policy and legislation to demonstrate inclusive practice. Crucially, for learners with albinism, this includes the need to ensure that positive social inclusion is promoted in the school and classroom and that negative practices and errant beliefs are challenged. At class level, teachers should ensure that they apply at least simple interventions such as to allow learners to wear a brimmed hat and access to their own textbook. Many of these are taken directly from the excellent booklet written for the African context, Albinism, information pamphlet for teachers (Lund, Massah, & Lynch, 2012). See the reference list below for the hyperlink to the full document that has many other practical ideas. From a broader perspective, governments should use knowledge of international and national policy commitments as leverage in calling for improved accountability and provision for learners with albinism at class, school, regional and national level. They should also seek out and draw on voices of those directly impacted by albinism. They are a rich and necessary source of experience and information to improve inclusive provision for learners with albinism.

Conclusion This chapter considers various challenges learners with albinism face in accessing education that is inclusive in nature in Botswana, Malawi and Zambia. It demonstrates that various supranational statements have helped shape national policies regarding the development of more inclusive practices in the three countries. However, it

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argues the evidence appears to show that often the application of these policies fails to translate into everyday inclusive working practices in education settings. This is due to a number of factors including deep-seated societal beliefs and practices that are detrimental to the well-being and advancement of people with albinism, lack of knowledge in the community (including in schools) about the facts of albinism, poor understanding of appropriate pedagogical practices in schools and classrooms, and inadequate teacher preparation in ITE settings. On a positive note, it describes how research designed to capture the voices and ideas of those impacted by albinism can lead to the development of contextually appropriate outputs such as engaging and educational radio dramas and good quality teacher-education materials that encourage sound educational interventions in schools. Many people with albinism in the three countries continue to face varying degrees of prejudice and sometimes violence because of their condition. It is to be hoped that schools working towards a more inclusive ethos through well-informed practices will act as a seedbed for the growth of more inclusive societies.

Summary of key points ●

●

●

●

The condition of albinism can cause a serious threat to the inclusion of learners in schools and wider society, even to the extent of individuals being physically harmed and socially ostracized. International and national policies in the countries discussed in this chapter provide a foundation from which inclusive education can be built. Taking careful note of the voices and experience of those impacted by albinism can have a powerful impact on the development of strategies and interventions designed to support the needs of those with albinism. There is clear evidence that learners with albinism can access educational opportunity in mainstream schools through some simple adjustments to the learning environment and social support of their peers and teachers.

Suggested questions for discussion 1. Many interventions for learners with albinism are relatively straightforward in nature: what simple measures can be taken for learners with other support needs in settings you are familiar with? 2. Why might the radio dramas referred to in the chapter have proved popular with a general audience? What media outlets might present opportunities in your own context? 3. What factors does a school need to take into account if it is to be a more inclusive learning environment for a pupil with albinism? 4. What locally appropriate structures and systems might be effective in ensuring that good inclusive practice is integrated in a sustainable way in schools and classrooms?

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Available online: https://curve.coventry.ac.uk/open/file/5c501215-c908-ead9-1212e9367731fd10/1/Albinism%20information%20for%20teachers%20and%20parents.pdf Lund, P., Massah, B., Mchekeni, F., & Lynch, P. (2015). Barriers to Access: Factors Limiting Full Participation of Children with Albinism at School in Northern Malawi: Part 1. Coventry : Coventry University. Lund, P. & Taylor, J. (2008). Lack of adequate sun protection for children with oculocutaneous albinism in South Africa. BMC Public Health, 8(1), 225. Lynch, P., Lund, P., & Massah, B. (2014). Identifying strategies to enhance the educational inclusion of visually impaired children with albinism in Malawi. International Journal of Educational Development, 39, 226–234. Magombo–Mana, K. (2016). Malawi must act on albino killings – Association for persons with albinism. Nyasa Times, 5 March 2016. Malawi Government (2007). Special Needs Education Policy (Revised). Malawi: Ministry of Education. Malawi Government (2012). Disability Act 2012. Malawi: Ministry of Education. Malawi Government (2013). National Policy on Education. Lilongwe, Malawi: Ministry of Education, Science and Technology. Mangope, B. & Mukhopadhyay, S. (2015). Preparing teachers for inclusive education in Botswana: The role of professional development. Journal of International Special Needs Education, 18(2), 60–72. Mitra, S., Posarac, A., & Vick, B. (2013). Disability and poverty in developing countries: A multidimensional study. World Development, 14, 1–21. Mkandawire, M. T., Maphale, S. P., & Tseeke, M. R. (2016). A comparative assessment of special education situations between Lesotho and Malawi. International Journal of Education and Research, 4(5), 171–184. Mmatli, T. & Seide, A. H. (2016). Living Conditions among People with Disability in Botswana. Trondeim: SINTEF. Mukhopadhyay, S. (2014). Botswana primary schools teachers’ perception of inclusion of learners with special educational needs. Journal of Research in Special Educational Needs, 14(1), 33–42. Mukhopadhyay, S., Nenty, H. J., & Abosi, O. (2012). Inclusive education for learners with disabilities in Botswana primary schools. SAGE Open, 2, 1–9. National Assembly of Zambia (2011). The Education Act 2011. National Assembly of Zambia (2012). Persons with Disability Act. Nel, N. M., Tlale, L. D. N., Engelbrecht, P., & Nel, M. (2016). Teachers’ perceptions of education support structures in the implementation of inclusive education in South Africa. KOERS – Bulletin for Christian Scholarship, 81(3). Available online: https://doi. org/10.19108/KOERS.81.3.2249, http://www.koersjournal.org.za/index.php/koers/ article/view/2249/pdf (accessed 1 July 2018). Nyirenda, E. Simbi, M. (2013). Love Builds. Available online: https://media.coventry. ac.uk/Play/7360 (accessed 20 September 2017). Otukile-Mongwaketse, M. (2011). Implementing Inclusive Education in Botswana Primary School Settings: An exploration of Teachers’ Understanding of Curriculum, Curriculum Adaptations and Children Who Have Learning Difficulties (PhD thesis), University of Exeter (accessed 24 July 2017). Rieser, R. (2012). Implementing Inclusive Education: A Commonwealth Guide to Implementing Article 24 of the UN Convention on the Rights of Persons with Disabilities. London: Commonwealth Secretariat.

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Sefa Dei, G. J. (2005). The challenge of inclusive schooling in Africa: A Ghanaian case study. Comparative Education, 41(3), 267–289. Serpell, R. & Jere-Folotiya, J. (2011). Basic education for children with special needs in Zambia: Progress and challenges in the translation of policy into practice. Psychology and Developing Societies, 3(2), 211–245. SINTEF (2006). Living Conditions Report in Zambia. Trondheim: SINTEF. Stubbs, S. (2008). Inclusive Education: Where There Are Few Resources. Oslo: The Atlas Alliance. Available online: http://www.eenet.org.uk/resources/docs/IE%20few%20 resources%202008.pdf (accessed 13 July 2013). Tchombe, T. M. (n.d.). Report: Transnational Study on Inclusion in Education Institutions in Africa – The Preparedness of Educators: The Cases of Cameroon, Kenya, Cote d’Ivoire, Nigeria and Togo. University of Buea, Cameroon. UNESCO (1990). World Declaration on Education for All & Framework for Action to Meet Basic Learning Needs. Available online: http://unesdoc.unesco.org/ images/0012/001275/127583e.pdf (accessed 12 July 2017). UNESCO (1994). The Salamanca Statement and Framework for Action on Special Needs Education. Available online: http://www.unesco.org/education/pdf/SALAMA_E.PDF (accessed 12 July 2017). UNESCO (2000). The Dakar Framework for Action, Education for All: Meeting Our Collective Commitments. Available online: http://unesdoc.unesco.org/ images/0012/001211/121147e.pdf (accessed 12 July 2017). UNESCO (2014). Teaching and Learning: Achieving Equality for All. Paris: UNESCO. UNESCO (2015). Zambia: Education for All 2015 National Review. Available online: http://unesdoc.unesco.org/images/0023/002315/231573e.pdf (accessed 28 August 2017). UNESCO (2016). Zambia: Policy Review Paving the Way for SDG 4 - Education 2030. Available online: http://unesdoc.unesco.org/images/0024/002464/246408e.pdf (accessed 28 August 2017). UNICEF (2013). The State of the World’s Children 2013: Children with Disabilities. New York: UNICEF. UNICEF (2016). UNICEF Data: Monitoring the Situation of Children and Women. Available online: https://data.unicef.org/topic/education/primary-education/# (accessed 22 November 2017). United Nations (1948). The Universal Declaration of Human Rights. Available online: http://www.un.org/en/universal-declaration-human-rights/ (accessed 12 July 2017). United Nations (1989). United Nations Convention on the rights of the Child. Available online: https://downloads.unicef.org.uk/wpcontent/uploads/2010/05/UNCRC_united_ nations_convention_on_the_rights_of_the_child.pdf (accessed 12 July 2017). United Nations (2015). The Millennium Development Goals Report 2015. Available online: http://www.un.org/millenniumgoals/2015_MDG_Report/pdf/MDG%202015%20 rev%20(July%201).pdf (accessed 6 September 2017). Urwick, J. & Elliot, J. (2010). International orthodoxy versus national realities: Inclusive schooling and the education of children with disabilities in Lesotho. Comparative Education, 46(2), 137–150. Wickenden, M. & Kembhavi-Tam, G. (2014). Ask us too! Doing participatory research with disabled children in the Global South. Childhood, 21(3), 400–417.

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Listening to Children with Disabilities: Voices from Uganda and Malawi Mary Wickenden (University College London)

Introduction The voices and opinions of children are increasingly sought both in the Global North and South as part of participatory research agendas. In the last three decades, there has been recognition that children and young people have the right to be heard and that their views are frequently different from the adults around them. This chapter will discuss the increasing consultation with children globally on a number of matters that affect them, highlighting the exclusion of children with disabilities from this trend and the reasons for this. It provides an overview of, and data from, five consultations held with groups of children and youth with disabilities in Uganda and Malawi as part of a wider study which set out to develop a new approach to the evaluation of communitybased rehabilitation (CBR). The data presented gives examples of the kinds of views that children with disabilities and young people may have and thus illustrates the importance of hearing their perspectives. Reflections on the findings and conclusions about the value of listening to children with disabilities, particularly in the Global South, for research or evaluation purposes are made.

Why consult children with disabilities? Echoing the UN Convention on the Rights of the Child (UN, 1989), researchers have promoted the re-conceptualization of children and young people as competent social actors and citizens. This appreciation of children’s competence and desire to speak for themselves has grown, and now there is acceptance that they can and should be consulted (Beazley et al., 2009). This may be for research purposes or other consultations, such as programme evaluations, which often aim to inform policy and practice (Lansdown, 2005). Children’s views may be different from adults, and if their views are missing then the risk is that ‘adultcentric’ actions will prevail (Crivello et al., 2008; Kellett, 2005; Skelton, 2008). There is now a substantial body of literature reporting studies on diverse topics and on methods for, and dilemmas arising from, including children in research, as well as

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on how to interpret and report the findings (Tisdall & Punch, 2012; Twum-Danso, 2016). This literature is in contrast to previous views of children as passive and having to achieve majority at eighteen years to be seen as structurally significant (Hart, 2008; Uprichard, 2008). The recognition that children and young people have important perspectives in their own right has so far not been extended widely to their peers with disabilities (Feldman et al., 2013). Thus, although children without disabilities are now increasingly recognized as rights bearers, as knowledgeable and able to express their views, this status is not usually given to children and young people labelled disabled. As Sabatello (2013) suggests, children with disabilities remain invisible. Their voices, which may be unusual and hard to interpret, are then seldom heard (Corker & Davis, 2000; Wickenden, 2011). There is mounting evidence of disadvantaged position of children with disabilities globally, and arguably this in itself should be enough to persuade researchers that listening to them is important (Kuper et al., 2014; UNICEF, 2013). The UN Convention on the Rights of Persons with Disabilities (2006), although arguably focused mainly on adults, underlines in a specific article, the rights of disabled children, to freely express their opinions and to access information, although this is often tempered by a potentially problematic and exclusionary stipulation about competence, as stated below. The necessity for appropriate resources and support to enable them to express their views is frequently overlooked: UNCRPD Article 7 3. States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.

Often this right to a voice is unrecognized or denied, particularly in cultural contexts where power relationships between adults and children are such that children anyway are not expected to have opinions of their own (Hunleth, 2011). This is often exacerbated for children with disabilities, especially where disability confers a devalued status, assumed lack of competence and denial of personhood (Burman et al., 2015; Singh and Ghai, 2009). Children who have communication, behavioural and/or severe intellectual impairments are particularly likely to be seen as incapable of having or expressing opinions, any potential response from them being seen as unreliable or irrelevant (Davis & Watson, 2000; Deal, 2007; Lansdown, 2012; Morris, 2003). Where children with disabilities are asked for their views, this can have numerous positive effects which can counter their usual exclusion and devalued status. Revealing their opinions, using appropriately adapted methods which enable their authentic participation, is potentially humanizing and revelatory and so increases understandings about them as people. It can show that they are more similar than they are different from their peers. It also challenges the tendency to focus too much attention on the child’s impairment and what they can or can’t do as opposed to who they are (Thomas,

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2004). It reorientates people to them as individuals and citizens. In the case of those who look different (i.e. having physical impairments), it can counter ‘oculocentric’ perceptions which are overly influenced by how someone looks. Such negative stances highlight physical difference instead of listening to what the person says (GarlandThompson, 2006; Paterson & Hughes, 1999; Shakespeare, 1994). Similarly, for those who communicate or think differently, careful interpretation of their unusual, alternative communication styles can again reveal them as being ordinary in more ways than they are unusual (Nind, 2008). Various authors have commented on the exclusion of children with disabilities not only from schools (where globally they are mostly absent) but also from community activities, research and other consultations (UNICEF, 2013; Wickenden & Elphick, 2016). While their non-disabled peers are involved in various innovative projects, they are for the most part not invited and seen as ‘uninvitable’. Reasons for this exclusion include lack of consideration of them as possible participants (because they are invisible), overgeneralized or ill-informed assumptions about their competence (assuming all children with disabilities are alike and incompetent), methodological concerns about how to include them and lack of knowledge or resources to make the necessary practical adaptations. Whereas inclusive education is now gaining acceptance, despite considerable practical challenges in implementing it in low resource contexts, the idea of inclusive and participatory research with disabled children is still very much in its infancy in the Global South, although there are a number of examples in the Global North (Davis et al., 2003; Franklin & Sloper, 2009; Nind, 2016; Wickenden, 2011).

Inclusion beyond education Inclusion as a concept has recently risen up the policy and practice agenda globally, not just in relation to education but also in other sectors and arenas. This has arguably been largely due to the effective lobbying by the disability community themselves, advocating for their right to be part of society not outside it (IDA, DPI). Recently, and importantly because of their universal rather than disability-specific applicability, the Sustainable Development Goals (SDGs) (UN, 2015) have embraced the concept of inclusion. The idea that everyone should have access to the same (mainstream) services and opportunities, rather than only special or segregated ones, is now embedded in globally agreed goals across sectors. This universal inclusion entailing adaptations to mainstream provisions and the environment shifts the onus to society at large to adapt to people’s needs whatever they may be. Thus, inclusive employment, health, leisure facilities and research are now becoming more familiar concepts in general discussions rather than just in disability or other minority group lobbying circles. However, there is still much progress to be made for the concept of an ‘inclusive society’ to be fully understood and implemented. The idea that children with disabilities can and should be included not just in their local schools and general healthcare but also in research is still novel and seems to be daunting for many adults, who are often inexperienced in working inclusively (Nind, 2016). It is easier said than done. A list of gatekeepers who need convincing about inclusive research with children would include not only parents and teachers but also

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community workers, health professionals, academics and policymakers. Crucially all can either promote or prevent the inclusion of children with disabilities through their responses and actions. Their negative responses may be fuelled by lack of knowledge and experience, discriminatory attitudes and resource concerns, as well as fear (of the unknown or of negative responses from others) or protective instincts towards the children (Ferri & Connor, 2006). There is clearly a need for more information and training on how children with disabilities can be included in a range of activities and contexts. This needs to cover both theory about how the concept of disability has changed to social and human rights–based models, as well as very practical ideas about how to make inclusion possible for children with a range of impairments (Nind, 2008). These kinds of adaptations are not necessarily easy or cheap, although some are. However, they will ensure that all children are able to participate in the best ways they can, and often such accommodations will also benefit other children who are not labelled disabled; for example, using visual materials will benefit children with poor literacy (Wickenden & Kembhavi, 2014).

Research in Uganda and Malawi In this section, I present data from five consultations with children and youth with disabilities in four sites in Africa – two in Uganda and two in Malawi. These consultations were carried out as part of a bigger study which aimed to design a participatory impact evaluation approach and tools for use in CBR programmes. The final package of materials developed is called ‘PIE’ (Participation Inclusion Evaluation) (Wickenden et al., 2016). A key aspect of developing PIE was ensuring that children were included in the evaluation of CBR alongside adults with disabilities and others. We trialled a methodology for working with children with disabilities, based on previous work (Wickenden & Kembhavi, 2014), and aimed to provide clear guidelines for evaluators about how to consult with them.

Setting the scene – Community-based Rehabilitation Community-based rehabilitation is a multisectoral strategy promoted by WHO (2010) to provide support for, and the realization of, the rights of people with disabilities at community level. CBR is used widely in middle- and low-income settings globally. The concept has evolved over the last two decades in response to a number of key developments: changes in conceptualizations of disability (ICF, 2001), the development of human rights approaches to disability embodied in the UN Convention on the Rights of Persons with Disabilities (UNCRPD, 2007), and changes from predominantly individual or medical (impairment-focused) approaches to understandings based on the ‘social model’ ideology (Barnes et al., 2002; Hughes, 2007; WHO, 2001). The CBR approach is summarized in a ‘matrix’ (WHO, 2010), suggesting that the focus of intervention may be on some or all of five key components (health, education, livelihoods, social and empowerment). The strategy is implemented in diverse ways

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in different countries (government or non-government). Nowadays with the rise of inclusive ‘mainstreaming’ approaches, CBR usually focuses on supporting people with disabilities accessing inclusive mainstream services and community activities, although provision of specialist services must also be catered for where necessary. Thus, programmes may provide training and awareness-raising for service providers and community members, funding for assistive devices, support to disabled people’s organizations (DPOs), and lobbying at local, regional and national levels (CBM, 2012; WHO, 2010). There is ongoing discussion globally about changing the name ‘CBR’ to ‘Community Based Inclusive Development’ (CBID) to reflect an approach that is broader than a pure health rehabilitation focus (WHO, 2017). Evaluation of CBR/CBID programmes has long been recognized to be complex and monitoring, and evaluation practices have remained patchy (Grandisson et al., 2014). As CBR/CBID has become increasingly multisectoral, this has only exacerbated the theoretical and practical challenges of doing meaningful impact evaluations at the individual, family and community levels (Kuipers & Harknett, 2008). Children with disabilities have to date rarely been included in such evaluation processes.

The research contexts – CBR programmes in Uganda and Malawi The histories of CBR in the two countries have similarities. In both Uganda and Malawi, CBR programmes are run by the national government (Ugandan Ministry of Gender, Labour and Social development and Malawi Council for the Handicapped – MACOHA, respectively), although funds and management are mainly devolved to the district level. In both countries, less than half of the districts are covered by active CBR programmes. Historically CBR was supported by international NGOs but now they have only a small amount of indirect involvement. Each programme is managed by a district manager, although the exact structures vary locally. They work with and through a ‘CBR team’, working at community level, some of whom are volunteers. They also work with various service providers in relevant departments of local government, such as education, health and social services, with non-government partners and also have close relations with DPOs, who are involved in some aspects of CBR management and provision. Children and young people with disabilities, and their families, may receive direct or indirect assistance. Once identified, a CBR worker usually visits their home, supports their enrolment in school, helps to procure assistive devices and advises their parents about accessing healthcare, inclusive community activities, income generation, etc. Evidence suggests that families with a disabled member are often poorer than others (Groce et al., 2011), so financial support and livelihood programmes at the household level are important. The family might also attend disability-related events in the community, join support groups, and lobby for rights and inclusion. In both countries, there is an active national organization for parents of children with disabilities and there are local self-help groups for parents in all four evaluation sites. Malawi and Uganda have committed at national policy level to inclusive and human rights approaches to disability, and CBR is seen as a key way to implement these principles. However, they are still a long way from achieving effective inclusion,

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for example, in relation to education. Nevertheless, both countries have a mixed profile with some excellent examples of inclusive practice with children being enrolled in their local primary schools, although secondary enrolment is weaker (NORAD, 2005; WHO, 2012). Good background data about children with disabilities is sparse in both countries. In Uganda, estimates are 13 per cent of children having disabilities and only 9 per cent of these attending school compared with 92 per cent of all children, with no clear gender difference (UNICEF, 2014). Children with vision and hearing difficulties are more likely to go to school than those with other impairment groups, and those with cognitive and multiple impairments were the least likely to attend (Abimanyi-Ochom & Mannan, 2014; Africa Child Policy Forum, 2011a, b; UNICEF, 2014). In Malawi, data is more problematic as there is no recent reliable prevalence study. Existing data is old and does not use standard impairment categories. A UNICEF (2011) situational analysis of Malawi reports 2.4 per cent of children have disabilities, but it recognizes this is an inaccurate underestimation. The same study quotes a 2003 national survey of school attendance showing 18.8 per cent of children with disabilities attending school compared with 41.1 per cent for their non-disabled peers (UNICEF, 2011). They suggest that the situation is worse for girls than boys but acknowledge that evidence is weak. The consultations for our evaluation study took place in the districts of Kayunga and Kasese in Uganda and in Machinga and Mzimba in Malawi. These were chosen purposively in consultation with government agencies and local experts in both countries. They were selected using various criteria including: being established stable programmes in different areas of the countries and a variety of topographies and local working arrangements. For example, Kasese is a hilly area while Mzimba has particularly strong involvement of volunteers. All are rural areas, where CBR has provided interventions for adults and children with disabilities for at least a decade, although the exact structures and types of activities vary and have evolved over time.

Research aims and methods The aim of the project was to develop, trial and refine the evaluation tools in a range of settings, rather than specifically to compare the four sites. However, the use of the finalized PIE approach in the future should allow systematic comparison of CBR programmes within or between countries or between subgroups within the population, such as children with disabilities in different places. The consultations with the children with disabilities during the PIE evaluations aimed to explore their awareness and perceptions of the CBR programme, as well as to trial methods of collecting this information and to ask them about broader aspects of their lives. The consultations were mainly in the form of focus group discussions (FGDs), run in the local languages, by teams of three local research assistants working on the PIE project. Each evaluation team had a mix of genders and included at least one person with a disability. All received four days training in the underlying theory and approach to evaluation being trialled, as well as detailed training about ethical issues and the use of the draft tools. They participated in a specific role-play session on running FGDs

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with children and young people and contributed to the design of the activities and topic guide. The recruitment of the children was purposive and varied according to the local situation, as advised by the CBR teams. The recruitment strategy was to invite children and young people with a variety of ages, impairments, genders and family situations with a maximum of eight children per group. However, this proved challenging, and some of the recruitment had to be done by convenience. We know there was some positive sampling bias towards children known to have benefitted from the CBR programme. We had hoped to invite some less well-known children, including those with complex impairments, who might not have benefitted so much from the programme, but this proved unfeasible in the time available, and there was also probably some resistance to inviting these children from our local colleagues. The discussions lasted 1 ½–2 hours. There were seven to eleven children in each group with an age range of 8–17 years in four of the groups and a mixture of impairments. Three groups were of mixed gender; one was a group of girls (Machinga, Malawi). Additionally, data obtained from a discussion with members of a group for youth with disabilities (aged 17–24) (Kasese, Uganda) is included. This was relevant especially as many were still at school, having enrolled in school late or missed some school years. There was a predominance of physical disability (e.g. cerebral palsy, leg amputation, polio, spina bifida) in all groups. However, each group also had at least one deaf child and one with learning disabilities. Two groups included at least one blind participant. In Kayunga (Uganda), the discussion was held with pupils in an inclusive primary school; the others were held in community centres which were familiar places to the children. In Kayunga, all the children were school attenders, whereas in the other contexts, this was not the case; however, the majority were. The children participated in the groups without their parents being present, although in Kayunga two school staff sat in, one because she was sign language interpreting. In this case, the presence of school staff may have affected the children’s contributions. The children were given a snack at the end of the session and their transport costs reimbursed if necessary. All parents signed a consent form and the children assented verbally to joining in. University College London’s ethics approval and that from Ugandan and Malawian National ethics boards were obtained in advance (Ugandan and Malawian National Councils of Science and Technology). The four children’s sessions followed a similar format. The session was introduced with an age-appropriate ice-breaking name game. The standard tasks were: ●

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Joint drawing/sticking activity, making a map of their village. Discussion about places they liked/didn’t like to go to Ranking task with a rating scale of five emoticons (like a lot, like a bit, so-so, not much, don’t like at all) about people they knew. Discussion followed about why and how these people were helpful/unhelpful to them Thinking about other children with disabilities around here – what help do they get and need?

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Brainstorm about what activities they usually do. Discussion about what they find easy and hard to do A brainstorm of dreams and future aspirations and which would be easy/hard to achieve Recommendations for things that would improve their lives.

An inclusive approach, enabling all children to join in, meant that each activity had a visual/pictorial aspect with an option for different levels of physical participation, for example, drawing, colouring, writing, placing stickers or thumb prints to indicate choices, depending on the children’s skills. Blind children were given tactile support and verbal descriptions of pictures, emoticon rating scales, etc. Sign language interpreters translated for and vocalized deaf children’s responses as appropriate. The youth group followed a different format which was similar to that used with adults during the PIE evaluation. This was more specifically focused on evaluation of the CBR programme and services, and participants were also invited to tell a personal story if they wanted to, based on an adapted version of Most Significant Change stories methodology (Davies & Dart, 2005). Data from six stories has been included in the analysis. The data was audio-recorded in local languages, translated, analysed and reported by the in-country research teams.

Analysis The larger project comprised an iterative process of designing an evaluation approach and tools, methods of recording and analysis. These all developed and evolved between the first two trials (Kayunga and Machinga) and the subsequent two (Kasese and Mzimba). There were intensive analysis workshops for the whole research team (international and local) between the trials, during which the methods, tools and results were interrogated and adaptations to the design were made. Thus, the way that the children’s data was collected, recorded and analysed varied across the four sites. I have done a reanalysis, using a standard thematic analysis approach (Braun & Clarke, 2006). I was not personally present for all of the children’s discussion groups, so I am dependent on the local researchers’ translations and recording keeping. New themes have been generated as the purpose of this chapter is different from the original evaluation.

Findings The key themes are presented. Data from across the four contexts has been combined, as there was a great deal of commonality between them, despite there being some differences between the four settings in topography, demographics and the way that the CBR programmes were organized. In some cases, the identity of the speaker was not recorded, and so data is reported for the group as a whole. Age, gender and impairment

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are given where possible. The quotes are translated from the local languages, so some nuances of meaning may have been lost in the process. Any real names have been changed. Sometimes the exact identity of the speaker was not recorded. Where available the participants’ age and type of impairment are noted: PI = physical impairment, HI = hearing impairment, VI = visual impairment, CI = cognitive impairment. Children refer to school grades, for example, S4 = Secondary 4, P2 = Primary 2, etc. The children and young people’s data has been grouped into two broad themes: 1. Related to CBR Awareness of CBR and disability-related activities Health related Education related 2. Broader reflections on life as a child with disabilities The environment People: within and outside the family Aspirations and dreams for the future Recommendations – things that would improve our lives

1. Related to CBR Awareness of CBR and disability-related activities There was a lot of awareness of the CBR programmes in all four contexts, although sometimes known by the name of the implementer rather than as ‘CBR’ (e.g. MACOHA in Malawi). The children mentioned the active help that the CBR team (paid workers or volunteers) had given them or their families and gave specific examples. Most of these were very practical things related to services provided: In education there is a time when CBR helped us. In the past we were in a very bad moment – when a child had a wheelchair there was no way he could pass through to go to the classroom …he had no way to go there direct in his wheelchair … but now it is possible if the child has a wheelchair you can send him there. (Youth group)

However, there was also awareness of other types of activities including training and raising awareness: After S4 James a CBR worker came and encouraged me to join some programmes and training. This began the change in my life. We learnt about human rights disability and mobilized other PWDs. I gained confidence in speaking with others and to be proud of whom I am. (Teenage girl PI)

Some older children and young people had been encouraged to lobby for improvements in services or for rights:

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I go to the woman MP to ask her for help with access to hospital and support for education. I like her because she gives me sweets and soda.

In the youth group, there was a discussion about: information given to them by CBR worker & the CBR manager and the woman MP who had helped their families and sensitised them on the rights of PWDs.

They were also aware that their parents had received support: My parents are member of Parents of Children with Disabilities group in Z village. They attend meetings. They have received ducks and are in the SACCO (savings coop). (Teenage boy PI)

There were however examples of less positive experiences: The only thing from CBR is the wheelchair and the duck that was stolen. Some parents get money but for me, none. So I have stopped attending meetings because others benefit and I do not. (Girl aged 19 PI)

Health related There was mention both of how they felt they were treated generally when going to health facilities and more specific impairment-related help: Doctors are helpful because they give us medicine.

One group report recorded that: 6 participants liked nurses because they treat people but some nurses do not care.

There was one recorded mention of traditional healing, though it is likely that more of them had some experience of this, as it came up with adults during the wider study. It is reported that the other children in the group agreed with this comment: I do not like witchdoctors because they take people’s money without healing them.

There was however a predominance of discussion about their specific impairmentrelated needs, such as therapy and provision of assistive devices. They mentioned their own particular needs but also talked about the needs of others. The reports listed a range of items mentioned by the children as being needed: White canes, hearing devices, crutches, wheelchairs, ‘cerebral palsy chairs’, callipers, and AFOs (ankle and foot orthoses). (Combined data)

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There were both positive and negative examples of accessing these: These officers straighten my limbs like legs for me to be strong so that I am able to walk. He (CBR volunteer) looks after me very well. In fact I was considered to be given a wheelchair because of him. I smile because of the wheelchair given to me, changed my life. I am happy. From P5 to P7 I had no hearing aid. After P7 someone directed my parents where I could get a hearing aid. I got it but could not get batteries for it to work. Then it got broken. A teacher took it to James (CBR Worker) but they said it cannot be repaired. (Girl aged 16 HI)

A boy who had acquired a spinal cord injury when very young explained how he had been excluded from school because of incontinence and the embarrassment of having a urine bag. Having missed many years of school, he had eventually been referred for help with managing this and had recently returned to school: Now I can put on a trouser, am happy, people have now liked me, at church am now among the choir members I feel very okay about this big change. Am playing music whereby I have started earning some money like 60,000/- a month though it’s seasonal. I have been also accepted in school (back in P6) and am doing well. (18-year-old boy PI)

This demonstrates the impact that an impairment-related intervention can make to an individual’s life across domains.

Education In the discussions, school was universally seen as very important. There were examples of the CBR team supporting children getting into school and getting sponsorship for school fees, uniforms and equipment. Nearly all the children were attending school at the time, but for many, this had been intermittent or was a rather mixed experience. They were aware that previously children with disabilities had not attended school and that they were lucky to go. In the past CWDs did not study at school because they would laugh at them, for instance if they were the only disabled child in the school, but today because so many of us are now going to school, others are encouraged.

There were a number of perceived positive aspects: learning, being given appropriate support, socializing and improving opportunities in the future: My two brothers stopped school because of this problem (blindness). They stopped in P6 and P4 respectively, but for me I never wanted to stop because I saw it that

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I need to study, learn English and get a job in future because I used to see other people who are disabled and educated in our village with better life. (Boy 17 VI) I like it because they give us knowledge & play with us in school. Because the school is good and there are many children with disabilities and special needs teachers, especially sign language.

The children’s perceptions of the teachers were mixed, many saying that their teachers were kind and friendly, but there were also negative reports: I do not like the teachers because they beat me when I say wrong answers and discriminate me. (Girl CI) We are made to sit at the back of the classroom and when the other children are making noise we cannot hear the teacher. (Boy HI)

A boy with albinism revealed that the main reason he dropped out of school was because of his teacher’s attitude. The teacher never allowed him to sit in front, although he had often requested this and had said that he could not see properly. There were other examples of the teachers’ lack of knowledge or skills to support children with disabilities, and this highlights their need for training about inclusion: I started at secondary school. In the school all teachers do not know sign language. This was the same in primary. I used to read what the teacher writes on the board and sometimes copy from my friends. (Girl 16 HI) In P7 I recall the teacher saying to me that, ‘if you pass PLE (national test at the end of primary), it will be God’s mercy and if you fail do not blame us’. (Girl 16 HI)

Some children reported the importance of an accessible/easy journey to school. Some had a long walk, and this was difficult for them, if they needed a wheelchair or to be carried. Sometimes the only school that would accept them was not the nearest, so an even longer journey away, for instance, by bus. Once at school some children with physical impairments reported that physical access, including toilet facilities, was poor and this made life difficult. After 3–4 years the disease (muscular dystrophy) got worse and I dropped out. I stayed out of school for six years. (Boy 16 PI) When I was 7 years old I started P1. I am a twin so my twin sister or older brother or mother would carry me to school. At school I crawled in the compound. I crawled into the latrine and they were dirty but there was nothing I could do about it. In this school I like it because it is boarding. I am studying and I have friends. What I do not like is I cannot enter dormitory with the wheelchair. The toilet which was separate for PWDs and others got filled up. Now we share with everyone. I go in with my hands because my slippers got torn. I and my friend (prefect in-charge of disabilities) are planning to talk to head prefect about it. (Boy 17 PI)

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I had friends at school and we used to play ‘graft’ (marbles with bottle tops). For sports I could only watch but I could participate in singing. (Boy 17 PI)

Despite the mixed picture in relation to teachers’ attitudes and often a lack of suitable adaptations, most are very positive about school and appreciative of it. They often highlight socializing, though they also mention negative aspects such as being teased or stigmatized: We are accepted as part of the school community, we love coming to school because teachers love us. They teach us new things. (Teenage girls group) The best thing in my life is going to school. Here I interact with other students with disability. Someone has promised to pay my fees and George’s (blind boy in S.4). (Girl 16 HI) But here everyone is friendly though some others still laugh at us and give us funny names. (Boy 17 VI) I like cleaning the school and burning rubbish. I like sweeping the school. I like singing and dancing and athletics. I like to look for fire wood and to fetch water. My friends in school are; I like this madam, she teaches me well and this Grace (deaf girl) is also my friend. (Boy 12 CI)

It seems that the boy in the final quote here is socially included but is being given jobs to do, possibly rather than being involved in learning in class. I studied up to P3. We were many pupils in the class, but because of my low vision I used to stand near the blackboard and other pupils could not properly see what was on the blackboard and they resorted to throwing stones at me. Then I left school, because I had no glasses to use while learning. I missed school for one year … I was able to join secondary school. I am now able to copy notes from the blackboard and revise my notes and I am being trained in braille, because my doctor said my vision will get worse. I am happy to be in school, because I can now speak English and learn better for a better future. (Boy 17 VI) I got a sponsor while in P5, and I was promoted to P6. There was lack of transparency with officer in charge of coordinating the sponsorship scheme and the foundation cancelled it. I was again chased away from school for a full term. I feel very comfortable to be in school because I am now able to talk in public, I move everywhere I want to go. (Young man 20 VI)

2. Broader reflections on life as a child with disabilities In the home environment, children mentioned being involved in a range of ‘typical’ activities such as household chores, playing with or visiting friends, studying, going to church or mosque, the market, borehole, well and sports field. They discussed which of these were more or less difficult to do, and most of the variation in these seemed

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to depend on the type of impairment they had, available resources and how much help and encouragement was available. They often mentioned relying on siblings or friends to help them. The researchers did not report any gender differences, although it is likely that some of these activities are traditionally gendered. Activities that they perceived would be easy for them to do in the future almost all agreed were washing clothes and dishes, cooking, sweeping the yard, pounding, cleaning the house, going to school and fetching water. Activities that were seen as potentially difficult to do were going to school (for some children), gardening, chatting and visiting friends at distant places, travelling to long-distant places, and earning a living. There is perhaps an indication here that life outside home is anticipated to be more difficult than home life.

The local environment They discussed at length places that they experienced as accessible or inaccessible around their village. They mentioned not wanting to go to water points because they perceive these as dangerous and some didn’t want to go to boreholes because other children would say they couldn’t pump properly. Here we can see that certain physical skills have a status and value which they were aware they might not attain. Road safety was also regularly mentioned with some feeling scared of busy roads and aware of the risk of accidents. However, they liked: Going to the market, it’s easy because there are ramps Going to my friend’s house or the football ground to meet other children Going to church because the pastor cares for me I like to go to church because they create space for me to sit. (Combined group data)

Relationships with others Within their own families, it was very common for the children to mention their grandmother as the person to whom they were closest and who supported them the most; this was followed by siblings. My grandmother loves us and cooks food for us.

However, this may be true of all children in these contexts rather than specific to those with disabilities, as grandmothers are very often key child carers. Outside their immediate families, they usually painted a positive picture of having friendships with other children nearby, being known and accepted in the neighbourhood. However, there were also some negative examples and there may have been some positive courtesy bias in their responses: I was born with this disability. I was given a white cane by the CBR volunteer but I did not like using it because people used to laugh at me, they would ask me whether I am an old man using a walking stick. (Boy 17 VI)

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I do not like to go to the neighbours because they nickname me and say that I eat a lot. (Girl CI) Sometimes I feel lonely because I cannot communicate my problem with someone. (Girl 16 HI)

Aspirations and expectations for the future The majority of the children and young people were very keen to share ideas about their futures, including anticipated challenges. They mentioned many occupations including pilot, teacher, head teacher, journalist, doctor, nurse, fireman, farmer, lawyer and accountant. They seemed very aware of the link between these aspirations and succeeding in education. Many gave clear justifications for their ambition: I want to be a doctor to the sick poor and the needy who suffer silently in the health facilities. (Boy 14 PI) I will be a teacher one day to help children in my village with reading lessons. (Girl 15 PI) I do believe that I will get a job in the future. I have very many friends and I am now independent, I own a poultry project. (Young man 20 VI) I want to be someone who can be someone. (Girl PI)

Participants’ Recommendations At the end of the group discussions, the participants brainstormed things they thought were needed in their community to make the lives of children and young people with disabilities better. This is a composite list for the four sites as there were many overlaps and similarities: More health promotion (sensitisation) & prevention (reported – not clear how it was expressed), books, provision of lunch, need a boarding section because our homes are far, assistive devices like glasses and hearing aids, increased salaries for special needs teachers because they do a lot of work for CWDs (reported but not clear how it was expressed), toys, school uniforms, sports kits, school bags, exercise books, pens, special latrines at school, knee pads, typewriters.

Research teams’ reflections The local researchers who ran the children’s consultations reflected on their experiences and were overwhelmingly positive about these. They reported feeling well prepared to undertake these groups because of the preparation training and as they had clear detailed

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topic guides of what to do and how to facilitate the discussions in inclusive ways. They reported that they had previously not experienced the idea of consulting children with disabilities and would not have thought it possible. They enjoyed running the sessions and felt that they had collected data that was both different from that collected from parents and added richness and alternative perspectives on the CBR programme. However, they felt that it was difficult to obtain specific, evaluative data, perhaps because the children were not always aware of the range of interventions that their family had accessed. Thus, they felt they had collected more general data on children’s lives than specific evaluation data on the CBR programmes. This perhaps also reflects a nervousness that the core research team had felt about asking the children to critique what was available in the absence of immediate opportunities to improve the provision.

Discussion It can be seen from the rich data presented that the children and young people were willing participants in the discussion and had plenty to say. They were assertive, were keen to demonstrate their competence and express their opinions, and were generally unafraid to express critical views as well as positive ones about the ways in which they experienced support. The research teams were surprised at how relatively easy it was to collect data from children with disabilities, as long as good preparation was done to ensure that all the children’s impairment needs were met. To this end, they had been given good briefing by the community workers who knew the children and families well. In the children’s responses, there is a strong focus on very practical issues related to everyday life and access to services such as health, assistive devices and education. My interactions with East African children and adults have taught me that this very pragmatic view is common and indeed realistic, particularly when there are generally few resources or opportunities for choice. Often I have asked parents whether their children like a particular aspect of life (‘Does he like his school?’) and am given the reply, ‘He has no choice.’ The idea of choice is perhaps a luxury which only people in high-resourced settings are used to? The children’s responses echo their parents’ in the sense that they are pragmatic and limited in relation to other possible options, of which they are only vaguely aware, for example, a girl with double amputated legs not being aware of the possibility of prostheses. Their pragmatism may also be an artefact of the main purpose of this consultation, that is, to ask about the availability and quality of existing help. The researchers did not ask very directly about CBR services but encouraged a wide-ranging discussion led by the children. The main reason for this was ethically we were concerned that directly discussing the CBR services and how they could be improved might raise the expectations of the young people to unattainable possibilities. For example, the conversations about ‘who they knew’ were presented in a very open way, starting with a list generated by the group and then followed by a discussion about who was helpful or not and how. Family members (parents, siblings, grandparents) were always mentioned first and then service providers such as CBR staff. Health and education professionals need not necessarily have been mentioned;

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however, they always were, as well as other community figures such as faith leaders and police. This is encouraging as it suggests that the children are mostly positively supported at home but also had received some of the services they needed. However, there is also clear evidence of shortages of assistive devices and of poor skills and attitudes too, within both the health and education systems and in the community. These replicate the views of adults in our wider study (it is possible that the children’s views were influenced by what their parents had said) and also echo other findings in middle- and low-income settings about attitudes to disabled people (UNICEF, 2013; WHO, 2011). The participants put strong emphasis on the importance of school, its social and educational value and potential to influence their futures. They also report many instances of difficulty getting into or getting on well in school. Although primary education is officially free, there are in fact many associated costs for families. They were well aware of the financial demands that education put on their parents but believed the investment in them was worth it. This is perhaps not surprising as it is seen as very important in both Uganda and Malawi, so their non-disabled peers would probably express similar views about the value and quality of schooling. A limitation of the research is the lack of data about the experiences of those who are not helped by the CBR programme or are not in school at all, and we know little about their opinions or those of their parents. This is a gap in literature generally. The participants’ attitudes to their impairments were accepting and realistic. Like those in other studies, the children focused most on what needed to be done to support them being ordinary and they did not like too much emphasis on how they were different (Watson, 2002). Their descriptions of what was important in everyday life and their priorities replicate closely other studies about children with disabilities in Africa (Nelson et al., 2016; UNICEF, 2011; UNICEF, 2014) and also those in other settings in the Global North and South (Wickenden, 2011; Wickenden & Elphick, 2016). As in other studies cited above, there was an absence of self-pity, which given that they are sometimes regarded with this emotion is encouraging. They expressed pride in their achievements and a strong sense of being important members of their families, wanting to contribute socially, practically and economically. In relation to their own identities, they used the acronyms ‘PWD’ (person with a disability) or ‘CWD’ (child with a disability) with ease. This is perhaps because these terms are very common in the Ugandan and Malawian contexts and so would have been used around them regularly. This ‘person first’ approach to labelling of people is the norm in both countries. The more social model influenced and politically charged term ‘disabled person’ used in the UK and other countries in the Global North, to emphasise the disabling role played by society, was not apparent in either context. The participants seemed comfortable occupying a disabled identity, at least in these sessions. As mentioned above, because of the purposive nature of the sample, this may be a skewed view, which is masking challenges or ambivalence around disability identity that may be present for some other young people in these settings or indeed for these participants in other situations. I have witnessed adults labelled with disabilities saying that they are aware of the contradiction that disabled identity is useful in some circumstances, when it opens up opportunities for resources and

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group power, but also that at other times they do not want to use it. The children may well be learning this seemingly contradictory but strategic type of essentialism too (Fuss, 1989). Although there is mounting evidence of increased rates of violence, abuse and neglect of children with disabilities and women compared with their non-disabled peers, this issue did not arise specifically (UNICEF, 2013). This is perhaps surprising, but it may be that the group context of discussion with other children they knew well and the one-off nature of the consultations precluded mention of such experiences or worries. Some participants, mostly the older ones, had a strong sense of disability rights, and they were people who should be accepted and appreciated on an equal basis alongside their non-disabled peers. Unlike the younger children, they have come to understand that their disabled status has social consequences, which they can choose to challenge. This may be a result of specific advocacy programmes they or their parents had been involved in or may have evolved independently. Either way it is encouraging to see their resistance to exclusion, and this bodes well for their futures as disabled adults with affirmative self-images and ambitions to be positive role models. Noticeably absent from the consultations are children with the most stigmatized impairments: communication, severe cognitive, behavioural and multiple difficulties. The researchers did note they would have found the presence of children with more complex needs challenging in relation to methodology. The exclusion of these groups is regrettable, and it is evidence of the perennial problem that these children are especially excluded. In the preparation training, it was emphasised that we aimed specifically to include them to avoid reinforcing their very disadvantaged position. In this study, the failure of the sampling strategy and local colleague’s lack of confidence to recruit these children are evidence both of the poor coverage of the CBR programme and that the CBR teams feel ill equipped to support them and their families. When they were asked to suggest children for the consultation groups, the local staff automatically excluded those with more challenging difficulties (Witchger et al., 2014). If it had been possible to include them, some more extreme examples of exclusion and discrimination would surely have emerged (UNICEF, 2011).

Conclusion Listening to children and young people with disabilities is new, especially in lowresource settings. The inclusion of their voices has great potential to elucidate their lives, concerns and opinions and to ensure they are seen as people with things to say. The arenas of disability and childhood studies, inclusive research and evaluation are all shifting territories. It is hoped that more nuanced understandings about both disability and children and youth in a range of diverse contexts will develop and that it will be recognized that individuals and communities intersect in some universal as well as culturally specific ways. Asking children and young people with disabilities about their lives in a wide range of settings in the Global North and South can help us

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appreciate the diversity of their experiences, priorities and needs, as well as revealing their ordinariness. This kind of consultation can contribute to ‘pure research’ projects and also to better planning and evaluation of interventions such as CBR or inclusive development.

Summary of key points ●

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Including the voices of children with disabilities in research projects is not only a rights based issue, but also has important policy implications. Children with disabilities get excluded from research due to a range of reasons, including a lack of consideration of them as possible participants, overgeneralized or ill-informed assumptions about their competence, lack of knowledge or resources to make the necessary practical adaptations in the methods employed. It is possible to meaningfully include children with disabilities when appropriate adaptations are made in the methods employed, and the process of participation in the research is largely democratic and ethical. The inclusion of voices of children with disabilities has great potential to elucidate their lives, concerns and opinions, and to ensure they are seen as people with things to say

Suggested questions for discussion 1. Why is it important to include the voices of young children with disabilities in research studies? 2. What are the different ways in which researchers can make sure that methods used to collect data are accessible for children with disabilities?

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Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. Burman, E., Greenstein, A., & Kumar, M. (2015). Editorial: Frames and debates for disability, childhood and the global South: Introducing the special issue. Disability and the Global South, 2(2), 563–569. CBM (2012). Inclusion made easy www.cbm.org/Inclusion-Made-Easy-329091.php. Corker, M. & Davis, J. M. (2000). Children with disabilities – invisible under the law. In J. Cooper & S. Vernon (Eds.), Disability and the Law. London: Jessica Kingsley. Crivello, G, Camfield, L., & Woodhead, M (2008). How can children tell us about their wellbeing? Exploring the potential of participatory research approaches within. Young Lives Soc Indic Res (2009), 90: 51–72. Davies, R. & Dart, J. (2005). The ‘Most Significant Change’ (MSC) Technique: A Guide to Its Use. Available online: http://www.mande.co.uk/docs/MSCGuide.htm Davis, J. M. & Watson, N. (2000). Disabled children's rights in everyday life: Problematising notions of competency and promoting self-empowerment. International Journal of Children’s Rights, 8(3), 211–228. Davis, J., Watson, N., Corker, M., & Shakespeare, T. (2003). Reconstructing disability, childhood and social policy in the UK. In C. Hallett & A. Prout (Eds.), Hearing the Voices of Children: Social Policy for a New Century Chapter 12 (pp. 192–213). Oxon: RoutledgeFalmer. Deal, M. (2007). Aversive disablism: Subtle prejudice toward disabled people. Disability & Society, 22(1), 93–107. DPI Disabled People’s International. Available online: http://www.dpi.org Feldman, M. A., Battin, S. M., Shaw, O. A., & Luckasson, R. (2013). Inclusion of children with disabilities in mainstream child development research. Disability & Society, 28(7), 997–1011. Ferri, B. A. & Connor, D. J. (2006). Reading Resistance: Discourses of Exclusion in Desegregation & Inclusion Debates. New York: Peter Lang. Franklin, A. & Sloper, P. (2009). Supporting the participation of children with disabilities and young people in decision-making. Children & Society, 23, 3–15. Fuss, D. (1989). Essentially Speaking. New York: Routledge. Garland-Thompson, R. (2006). Ways of staring. Journal of Visual Culture,.5(2), 173–192. Grandisson, M., Hébert, M., & Thibeault, R. 2014. A systematic review on how to conduct evaluations in community-based rehabilitation. Disability and Rehabilitation, 36(4), 265–275. Grech, S. & Soldatic, K. (Eds.) (2016). Disability in the Global South: A Critical Handbook. New York: Springer. Groce, N., Kett, M., Lang, R., & Trani, J. F. (2011). Disability and poverty: The need for a more nuanced understanding of implications for development policy and practice. Third World Quarterly, 32(8), 1493–1513. Hart, J. (2008). Children’s participation and international development: Attending to the political. International Journal of Children’s Rights, 16(3), 407–418. Hughes, B. (2007). Being disabled: Towards a critical social ontology for disability studies. Disability & Society, 22(7), 673–684. Hunleth, J. (2011). Beyond on or with: Questioning power dynamics and knowledge production in ‘child’ orientated’ research methodology. Childhood, 18(1), 81–93. IDA International Disability Alliance. Available online: http://www. internationaldisabilityalliance.org

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Kellett, M. (2005). Children as Active Researchers: A New Research Paradigm for the 21st Century?. UK: ESRC. Kuipers, P. & Harknett, S. (2008). Guest editorial. Considerations in the quest for evidence in community based rehabilitation. Asia Pacific Disability Rehabilitation Journal, 19(2), 3–14. Kuper, H., Monteath-van Dok, A., Wing, K., Danquah, L., Evans, J., Zuurmond, M., & Gallinetti, J. (2014). The impact of disability on the lives of children; cross-sectional data including 8,900 children with disabilities and 898,834 children without disabilities across 30 countries. PLoS One, 9; 9(9), e107300. Lansdown, G. (2005). The Evolving Capacities of the Child. Florence: Save the Children, UNICEF Innocenti Research Centre. Lansdown, G. (2012). Using the Human Rights Framework to Promote the Rights of Children with Disabilities. New York: UNICEF. Morris, J. (2003). Including all children: Finding out about the experiences of children with communication and/or cognitive impairments. Children & Society,.17(5), 337–348. Nelson, F., Masulani-Mwale, C., Richards, E., Theobald, S., & Gladstone, M. (2016). The meaning of participation for children in Malawi: Insights from children and caregivers. Child: Care, Health and Development, 43(1), 133–143. Nind, M. (2008). Conducting Qualitative Research with People with Learning, Communication and Other Disabilities: Methodological Challenges (p. 012). ESRC National Centre for Research methods NCRM. Nind, M. (2016), The practical wisdom of inclusive research. Qualitative Research, 17(3),277–288. NORAD (2005). Evaluation of the Community Based Rehabilitation Program in Uganda. Available online: https://www.norad.no/om-bistand/publikasjon/ngo-evaluations/2009/ evaluation-of-the-community-based-rehabilitation-program-in-uganda Paterson, K. & Hughes, B. (1999). Disability studies and phenomenology: The carnal politics of everyday life. Disability & Society,.14(5), 597–610. Sabatello, M. (2013). Children with disabilities: A critical appraisal. International Journal of Children’s Rights, 21(3), 464–487. Shakespeare, T. (1994). Cultural representation of disabled people: Dustbins of disavowal? Disability & Society,.9, 283–299. Singh, V. & Ghai, A. (2009). Notions of self: Lived realities of children with disabilities. Disability & Society, 24(2), 129–145. Skelton, T. (2008) Research with children and young people: Exploring the tensions between ethics, competence and participation. Children’s Geographies, 6(1), 21–36. Thomas, C. (2004). How is disability understood? An examination of sociological approaches. Disability & Society, 19(6), 569–583. Tisdall, E. K. M., Punch, S. (2012). Not so ‘new’? Looking critically at childhood studies. Children’s Geographies, 10(3), 249–264. Twum-Danso, A. (2016). From the singular to the plural: Exploring diversities in contemporary childhoods in sub-Saharan Africa. Childhood, 23(3), 455–468. United Nations (UN) (1989). Convention on the Rights of the Child. Available online: www.unicef.org.uk/Documents/…pdfs/UNCRC_PRESS200910web. UN (2007). UN Convention on the Rights of Persons with Disability. Available online: https://www.un.org/development/desa/disabilities/convention-on-the-rights-ofpersons-with-disabilities.html.

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UN (2015). Sustainable Development Goals (SDGs). Available online: http://www.un.org/ sustainabledevelopment UNICEF (2011). Calls for Children with Disabilities to Be Included in All Development (3 December). Available online: http://www.unicef.org/media/media_60790.html UNICEF (2013). State of the World’s Children: Children with Disabilities. New York: UNICEF. UNICEF (2014). Research Study of Children with Disabilities Living in Uganda. Available online: https://www.unicef.org/uganda/UNICEF_CwD_situational_analysis_FINAL. pdf Uprichard, E. (2008). Children as ‘Being and Becomings’: Children, childhood and temporality. Children and Society, 22, 303–313. Watson, N. (2002). Well I know this is going to sound very strange to you but I don’t see myself as a disabled person: Identity and disability. Disability and Society,.17(5), 509–527. WHO (2001). International Classification of Functioning, Disability and Health. Geneva, Switzerland: WHO. WHO (2010). CBR Guidelines. Available online: http://www.who.int/disabilities/cbr/ guidelines/en WHO (2012). Developing a National Community-based Rehabilitation (CBR) Program in Malawi. Available online: http://www.who.int/disabilities/media/news/2012/31_01/en/ WHO (2017). Rehabilitation 2030: A Call for Action. Available online: http://www.who.int/ disabilities/care/CallForAction.pdf?ua=1 WHO and World Bank (2011). World Report on Disability. New York: United Nations. Wickenden, M. (2011). Whose voice is that? Issues of identity, voice and representation arising in an ethnographic study of the lives of disabled teenagers who use Augmentative and Alternative Communication (AAC). Disability Studies Quarterly, 31(4). Wickenden, M. (in press 2017). ‘Disabled’ versus ‘nondisabled’: Another redundant binary?. In A. Twum-Danso Imoh, M. Bourdillon, S., Meichsner, & F. Wanderley (Eds.), Beyond Binaries: Exploring Children’s Lives across Worlds. London: Palgrave. Wickenden, M. & Elphick, J. (2016). Chapter 24: Don’t forget us, we are here too! Listening to the perspectives and priorities of children with disabilities and their families living in contexts of poverty. In S. Grech & K. Soldatic (Eds.), Disability in the Global South: A Critical Handbook. New York: Springer. Wickenden, M. & Kembhavi, G. (2014). Ask us too! Doing participatory research with children with disabilities in the Global South. Childhood, 21, 400. Wickenden, M., Andrae, K., Cornielje, H., Post, E., Schneider, M., & Gondwe, R. (2016). PIE Handbook and Tools: Participation Inclusion Evaluation. A Flexible Approach to Evaluating the Impact of CBR and Inclusive Development Programmes. Available online: http://www/ucl.ac.uk/igh/research/a-z/participatory-development-impact-evaluation Witchger Hansen, M., Siame, M., & Van Der Veen, J. (2014). A qualitative study: Barriers and support for participation for children with disabilities. African Journal of Disability, 3(1), 112.

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Mothers as Educational Enablers: Examining the Journeys of Young Women with Disabilities in Pakistan Tehmina Hammad (University of Cambridge)

Mothers became role models … because of their unstinting hard work and sheer persistence against all the odds, and in some instances, their willingness to challenge traditional gendered practices. They provided real inspiration and a determination for their daughters to emulate these characteristics and to succeed in school. (Warrington, 2013, p. 410)

Warrington’s (2013) examination of parental contribution in young women’s education in Uganda suggests that mothers not only challenged gendered practices, but were also key figures in inspiring their daughters to succeed in school. While mothers play an important role in their children’s education (Reay, 1998; Williams, Williams, & Ullman, 2002), much of the educational research inadequately captures the gendered nature of mothers’ involvement and support (DFID, 2010; Hornby, 2011). This is even more evident when it comes to women with disabilities, where the role of mothers as educational enablers has rarely been examined. This chapter highlights the gendered nature of mothers as enablers along the educational journeys of young women with disabilities in the impoverished context of Pakistan. It is based on the rich narratives of six young women (and their mothers) who have achieved relatively high levels of education in a context where women mostly have little or no education. I begin this chapter by discussing how mothers have usually been framed in educational research in the Global North.1 I then highlight the complex cultural context in which mothers function in the Global South.2 This is followed by a description of education, gender and disability in the context of Pakistan. The capability framework for education is explained next. This framework helped capture the gendered processes that influence mothers as enablers in their daughter’s educational journeys. This is followed by details of the study and an analysis of the findings. The chapter concludes with a discussion on the study’s contribution towards, and implications for, educational research and policy.

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Mothers in educational research In educational research, mothers are usually viewed from an enabling or a marginalized position. The enabling position regards them as responsible for their children’s academic success (Blum, 2007; Petrie & Holloway, 2006). It links mothers’ educational support with their personal development, the lack of which limits their children’s education (Chevalier, Harmon, O’Sullivan, & Walker, 2010). This positioning also applies to mothers of children with disabilities (Hornby & Lafaele, 2011). In contrast, the marginalized position focuses on the personal challenges which mothers face (Ryan, 2005), in employment due to their gender identity (Veck, 2002), and in their caring responsibilities (Shearn & Todd, 2000). Moreover, mothers of children with disabilities face the added stigma associated with giving birth to a child with disability (Birenbaum, 1992). These barriers are considered to impact the wellbeing of the mothers and restrict their children’s education (Hornby, 2011), especially those of children with disabilities (Green, 2007). These two positions are limited in capturing the gendered nature of mothers as enablers in their children’s education (Hornby & Lafaele, 2011). The enabling framing focuses more on the education levels of the mothers (Chevalier et al., 2010), and less on how they overcome barriers to facilitate the education of their children with disabilities (see Department of Children, Schools & Families, 2008). The marginalized framing focuses mainly on the barriers that mothers face (Ryan, 2005), wherein they not only overcome these hurdles, but also actively support their children’s education (Warrington, 2013). Mothers engage with their children’s education on a daily basis (Green, 2007) and become their children’s allies (Warrington, 2013). Mothers also find creative ways (Petrie & Holloway, 2006; Read, 2000) to enhance their children’s educational experiences (Ryan, 2005). This suggests that mothers’ support in their children’s education involves both their enabling and marginalized positions, which neither of these framings on their own are able to capture. Examining mothers’ involvement and support in the educational journey of their children with disabilities could inform how mothers enable education, as well as overcome barriers. This examination, however, becomes challenging in the complex cultural context of the Global South (Colclough, 2012), particularly in the case of people with disabilities (Grech, 2015), as explained next.

Mothers in the Global South The cultural context of mothers in the Global South is complex. Most women are marginalized, in part, due to their gender, and, moreover, due to disability (Thomas & Thomas, 2002a). They experience patriarchal norms which position them below men, even when they are educated (Colclough, 2012), and below non-disabled women if they have a disability (Hammad & Singal, 2015a). Educated women with disabilities face social exclusion (Bhambani, 2003), such as being regarded as ‘unmarriageable’

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(Dhungana, 2006). They also face unequal resource distribution within families and institutions (Gurung, 2015), namely the lack of accessible facilities in schools or that of exam support by the government (Hammad & Singal, 2015b). Mothers of children with disabilities are further stigmatized (Miles, 2002). They are usually involved in the education of their children, and are often their primary caregivers (Chakarvarti, 2013). This additional responsibility usually results in increased workload and stress (John, 2012). Mothers navigate through complex familial norms/boundaries and institutions (Hammad & Singal, 2015a) to support their children’s education, even when they are not educated themselves. Warrington (2013), in the context of Uganda, found that even illiterate mothers facilitated their daughters social mobility in education through their encouragement and care, even when they spent little time educating them and did not share a formal relationship with the school. Mothers’ involvement and support in their children’s education is intimately connected to the context. David et al. (1997) highlight that the choices mothers make for their children’s education are the products of particular social contexts and sets of structural and moral constraints. Mothers learn from their cultural interactions and experiences in families, communities and society. In these cultural contexts, mothers and daughters establish reciprocal relationships (Hammad & Singal, 2015a), and innovatively adjust to and share/sustain familial relationships (Thomas & Thomas, 2002a). This learning also enables them to reduce disability-related stigma (Thomas & Thomas, 2002a). Mothers’ interactions within a cultural context, however, are less understood in the education of their daughters with disabilities in Pakistan.

Education, disability and gender in Pakistan Pakistan represents an impoverished context. It occupies one of the lowest levels on the Human Development Index, with adult literacy rates at 49 per cent (United Nations Development Programme, 2006), and low female participation in employment. Pakistan Census 1998 highlights that 2.49 per cent of the population (3.2 million people) has some form disability, of which 1.37 per cent are females. A 2010 legislation made education compulsory and free for children between the ages of 5 and 16 years. In 2011, Pakistan ratified the UN’s convention on disability, and in 2004 allocated a 2 per cent quota in government jobs to people with disabilities. People with disabilities in Pakistan are primarily viewed in terms of their impairment (Lari, 1992; Miles, 1992), and face social exclusion (Alam et al., 2005; Thomas & Thomas, 2002b). Special education is prescribed for people with disabilities to improve their skills and employment prospects (Khan, 1998; Lari, 1992). However, even when admitted to mainstream schools, they are not integrated within the institution (Miles, 2001). These issues become more prominent for women with disabilities due to their sociocultural positioning (Hammad & Singal, 2015b), as discussed below. Gender is a contextual construct. In relation to women in Pakistan this construct focuses on what they do, rather than who they are, which is a privilege for men (Tarar,

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2012). Women are not allowed to know their individual self (Ahmed, Khan, & Nasem, 2011), and are distinguished by their belonging; the mother belongs to the father and the daughter belongs to the husband (Tarar, 2012). While this sociocultural positioning creates more work and responsibility for women, it also provides mothers of children with disabilities the freedom of movement (Yousafzai, Farrukh, & Khan, 2011). This freedom, however, is countered by structural barriers they face while supporting the education of their children with disabilities, resulting in overwork, anxiety and stress (Minhas et al., 2015). It is in this challenging sociocultural context that mothers are involved in the education of their daughters with disabilities (Ahmed et al., 2011). The interactions between disability and gender bring mothers closer to their daughters. Tarar (2012) highlights that mothers and daughters develop shared identities, where mothers view their daughters in their own image. Daughters, in return, worry about their mothers. Mothers and daughters together navigate deep patriarchal norms within the family, and in educational institutions. This mother-daughter connection, however, is viewed rather sceptically. It is often referred to as maa-beti (motherdaughter), suggesting that they represent one synchronized unit who think, feel and act together. This synchronized unit is challenging to examine within the established enabling or marginalized framing of gender in educational research.

The capability framework for education This chapter adopted Hammad and Singal’s (2015a, 2015b) capability framework of education to examine mothers as enablers in the education of their daughters with disabilities. This framework regards capabilities (freedom) not just as an end state of human flourishing (see Sen, 2009), but also as an initial state, for example in terms of the absence of freedom (see Atkinson, Cantillon, Marlier, & Nolan, 2002; see Crocker, 2008). This process-oriented view allowed the examination of how mothers converted their gendered processes into practical opportunities or functioning for themselves and their daughters (see Sen, 1990, 1995). The framework centralizes subjective evaluations of young women with disabilities (see Miles, 1997a; Mitra, 2006; Mutanga & Walker, 2015) approaching them (and their mothers) as equal participants in knowledge production (see Mohanty, 2003). This overcame the ethical concerns in educational research (Hammad & Singal, 2015a), and resonated well with the UK’s Office for Disability Issues (2010) suggestion that the most effective way to involve people with disabilities in research is through co-production of knowledge. As presented in Figure 15.1, the capability framework for education includes three main elements – means to achieve (resources), freedom to achieve (capabilities) and achieved functioning (outcomes). The means to achieve are affected by the sociocultural norms (family, household and societal level) and are related to personal attributes (gender, age, poverty), which in turn influence the processes of development and their conversion into freedom to achieve choices and achieved functioning. This understanding has the potential to inform global policy on the education of people with disabilities (see Terzi, 2003, 2008).

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Affected by (family, household structures, socio-cultural norms, etc.)

Freedom to Achieve

Means to Achieve (availability of and access to schools, infrastructure, teachers, curriculum, etc.)

Individual Conversion

Related to (gender, poverty, age, etc.)

(levels of education (primary, secondary or tertiary); type of education (professional, vocational, etc.); etc.)

Achieved Functioning Choices

(education achieved low, medium or high, etc. )

Figure 15.1 The capability framework for education (Hammad & Singal, 2015a, 2015b)

Details of the study The study gathered rich narratives of six young women with disabilities, as well as their mothers’. These women represented ‘exemplary cases’; that is, cases reflecting strong, positive examples (Yin, 2003) with relatively high levels of education. They were identified in collaboration with the Special Talent Exchange Programme (STEP), Pakistan Foundation for Fighting Blindness (PFFB), Sightsavers and Handicap International. These organizations also helped in providing details of the context, highlighting ethical matters, and understanding religious, sociocultural or other sensitivities and etiquettes of conducting disability research in Pakistan. A case study design was used; an approach particularly recommended for research with vulnerable groups (Brantlinger et al., 2005). The design regarded each of the six women with disabilities as a unique case. The data was collected during an earlier research study3, which explored the educational journeys of young women with disabilities through semi-structured interviews. The information was collected on the basis of mutual respect, with each participant being regarded as a repository of local knowledge (Miles, 1997b). Moreover, the interviews were conducted with due sensitivity to the mobility and access to transportation of the participants, convenience of location, a secure environment and sociocultural etiquette. A research diary was kept to record insights, which became a useful tool at the analysis stage when identifying patterns and themes. A typical interview lasted for approximately ninety minutes. With due consent, all interviews were recorded using a tape-recorder and later transcribed into English. The data analysis involved open coding, followed by the development of a coding sheet in which the data was categorized. Next, the emerging patterns and themes were explored both in terms of their commonalities and the uniqueness of individual cases (Miles & Huberman, 1994). A colleague checked the codes, categories, themes and patterns to ensure the retention of phrases that held deep cultural meaning.

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Table 15.1 provides the participant profiles, using pseudonyms. All women belonged to low-income households from urban Punjab. They had completed their secondary education, with most proceeding to higher education, and were currently engaged in professional occupations. Of the six cases, two had achieved twelve years of education, while four had achieved sixteen years of education. On average, their families had seven members, matching the average for Pakistan (Population Census Organisation Pakistan, 1998). Five women had fathers with low education levels (school only), while one father was educated to the Master’s level. The fathers’ occupations included shopkeepers, government employees or store managers. Four mothers had no education, while the remaining two had some formal education. Most mothers were housewives, while one ran a private school. Table 15.1 Profile of young women with disabilities Cases Age (Pseudonym) (years)

Family Level of size education

Marital status

Nature of impairment

Type of educational institution

Asma

24

7

12 years (Fellow of Arts)

Unmarried

Physical - Mainstream (acquired schooling impairments) - College (private candidate)

Rehana

27

7

16 years (MSc in Mathematics)

Unmarried

Physical (acquired impairment)

- Mainstream schooling - College and university (private candidate)

Humeira

33

7

Unmarried 16 years (Master’s in Islamic Studies, studying for another master’s)

Visual (acquired impairment)

- Special and mainstream school - College and university (private candidate)

Ayesha

30

7

16 years Unmarried (Master’s in Mass Communication)

Visual (acquired impairment)

- Special and mainstream school - University

Farhana

20

9

16 years (Master’s in International Relations)

Unmarried (in a relationship)

Visual (impairment from birth)

- Studied at home until completing College - University

Naseem

30

9

12 years (Fellow of Arts)

Unmarried

Visual (acquired impairment)

- Mainstream and special school - College (private candidate)

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In the following sections, I present the narratives of both the young women with disabilities and their mothers, starting with the mothers’ navigation of the familial context, followed by negotiations with institutions (schools and government) to gain access for their daughters’ education. Finally, the women’s narratives are presented on the way their mothers enhanced their educational experiences, the achieving of their education levels and other outcomes, and the limits placed on mothers as educational enablers.

Navigating the familial context Mothers had to negotiate within either strong or weak patriarchal contexts. The weak patriarchal contexts were more equitable and encouraging of mothers in enabling their daughters’ education, as compared to the strong patriarchal contexts. Mothers of Naseem, Farhana, Rehana, and in particular Ayesha, functioned in weak patriarchal contexts. Rehana recounted, ‘I have also never had any problem inside my home … I am not favoured in any way in the house, everything is based on equality.’ Ayesha was even more privileged because she and her sister (who also had an impairment) were favoured over their siblings. She recounted, ‘We two sisters got more importance than other children, so we have never been treated any less than others … even when my father used to bring fruit, he would first give it to us.’ This provided an encouraging environment for their education. Ayesha noted, ‘There has been a lot of encouragement from the family [parents for my education].’ Similarly, Rehana enjoyed her father’s unstinted support for her education: ‘My Abu (father) has given us a free hand that we can study whatever we like … [and have] the liberty to choose our own schools.’ The weak patriarchal context contributed to the young women’s education in several ways. It positively affected the attitudes of siblings, as noted by Ayesha, ‘My parents created an encouraging atmosphere in the house which has really helped … that is why the attitudes of my brothers and sisters has been positive as well.’ These positive sibling attitudes spilled over into their education. Rehana’s sister not only taught her, but also made a strong case for her schooling, and ‘That is how I started school,’ said Rehana. Similarly, the weak patriarchal context helped mothers. For example, Rehana’s father made a conscious effort to reduce her mother’s workload because she had to accompany their daughter in school, ‘My father had a habit of always eating fresh food, but ever since I started school, he was so cooperative that he never demanded from my mother to cook fresh food every day’, said Rehana. The education of the young women in general, and their mothers’ support for their education were therefore specifically facilitated by the weak patriarchal contexts. Other mothers, such as Asma and Humeira’s, functioned in strong patriarchal contexts. Asma’s mother reflected, ‘The atmosphere in our house is conservative … My own family was more liberal … after getting married, I found the atmosphere of this [husband’s] house difficult to adjust to.’ Humeira faced profound educational hurdles due to the lack of support from her father, and particularly from her brother.

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These strong patriarchal contexts affected the mothers’ interactions with the outside world. Asma’s mother said, ‘We have never gone out on weekends, or for a picnic, or on a holiday as a family. This has never happened in our family.’ When older, Asma wanted to participate in an advertisement campaign for a multinational company, her father initially resisted because she had to travel to a different city for the same. It was only after her brother convinced their father that he eventually agreed. Similarly, Humeira received little support from her father and siblings who ‘did not bother to educate me after 1995. They just left me after that’. The strong patriarchal contexts posed considerable challenges for the mothers. The mothers were not only held responsible for raising their own children, but also their grandchildren, suggesting that their caring responsibilities were lifelong. For example, Humeira said, ‘This is not fair on my mother. She has worked hard for thirty-five years [taking care of us], and now she is having to take care of my brothers and sisters’ children.’ This workload got compounded if the mother had to take care of another child with disability. Asma’s brother also had a disability and was difficult to handle, which created more work and stress for their mother. Asma’s mother went on to suggest that she no longer had the strength or energy to care for her daughter, ‘I am getting old now. I have joint aches. First I used to take her to the toilet, but now I find it very difficult … Now my younger daughter helps me pick her up as I am now unable to do it myself.’ Overall, the strong patriarchal contexts offered little support to mothers in enabling the education of young women with disabilities. Mothers received varying levels of support from the extended family. This support, interestingly, was less in the case of weak patriarchal contexts. Rehana’s extended family was less supportive of her education. She said, ‘My Chacha [paternal uncle] opposed my education.’ Naseem had similar family experiences where she noted, ‘[whereas] some of my brothers-in-law were supportive, but my older brother-in-law was completely against it’. Naseem’s mother, however, resisted the negative attitudes of the extended family to educate her daughter. In contrast, mothers received more support for their daughter’s education from the extended family in the strong patriarchal familial contexts. Asma’s mother relied heavily on this, and highlighted their caring attitudes, ‘Family in general are very nice to her. My cousin, who is also her Dada [paternal grandfather], really loves her and also supports her financially.’ Similarly, Asma’s Phupo (paternal aunt) taught her when she was young. With limited interaction with the outside world in strong patriarchal contexts, these mothers’ engagement within the extended family network became an important source of information for their daughters’ education. It was Naseem’s Maamoon [maternal uncle] who recommended to her mother to send her to a special school because they could cater better to the needs of visually impaired children. A relative of Humeira’s mother, who worked in a university, informed her about the facility of a writer which the government provided during exams. Asma’s mother also found out about STEP from her interactions with other parents at school. Thus, mothers found creative ways of navigating the patriarchal contexts by seeking information from different sources to support their daughters’ education.

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Negotiating access to education The mothers faced a number of challenges in gaining access to schools. In Rehana’s case, the mainstream school, which she wanted to attend, suggested that her parents admit her to a special school because theirs lacked facilities to accommodate her impairmentrelated needs. Asma was also denied admission in her city’s college because it was not able to address her needs. In this scenario, mothers played an important role in negotiating access. It was Humeira’s mother who made efforts to get her admitted to college. Similarly, on her mother’s insistence, Rehana’s mainstream school, which had initially refused admission, set a test for her, on passing which she was admitted. Going to the mainstream school was Rehana’s choice because she felt: Even in education, the persons with disabilities are restricted to special education, this should not happen … whenever these children are sent to special education system, all they do is to teach them some sort of skill … like embroidery for girls … They should give them proper education, so that their intellectual abilities are improved rather than simply skill development.

Post admission, the women faced considerable difficulties in accessing school infrastructure. In Rehana’s case, though the school and most of its teachers encouraged and supported her, considerable access-related issues prevailed within the institution. Farhana was also of the view that the schools in Pakistan were not conveniently located and lacked accessible infrastructure. These issues were even more pronounced beyond secondary school level. Asma was denied admission to the colleges in her city because they could not accommodate her needs. The colleges that would admit her were located in a nearby city. However, her father did not permit her to travel there on a daily basis so she had to take the exams privately. The women and their mothers received little help from the government. Often, the supports that were provided were not helpful. Asma and her mother said that since the government lacked funds, they did not even think about asking for governmental support and provisions, such as a wheelchair. The government had a provision for scribes during the exams, but this support was difficult to access due to the criteria used to identify needs. For example, Asma said, ‘I have been asking for a helper for writing as I have told the Board people [government’s Board of Education] that I cannot write. But they keep saying that if you did not have a hand, only then would we have provided you with a scribe.’ Her application for the same was repeatedly rejected. Asma was also not given any extra time during exams. Additionally, during the college exams, the government appointed educated invigilators. Asma’s mother, however, regarded them as completely illiterate because they had no consideration for Asma’s disability. The invigilators continuous chatter while she took her exams was a cause of distraction, resulting in Asma feeling angry and frustrated, ‘On the last paper I got extremely angry, as I was listening to them chat during every paper … So I told them that if I fail I will be the one suffering. Why are you bothered!’ Asma’s mother

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noted the extreme stress which the invigilators’ behaviour caused her daughter, ‘They do not even consider that she had a disability, and on top of that she has the tension of the exam – how will she be able to think and give the paper. She was in double tension.’ Thus mothers supported their daughters’ education with minimal government support and whatever support was provided was not helpful.

Enabling educational experiences All the mothers encouraged their daughters to interact outside of the home, even in the strong patriarchal contexts. For example, Asma had confined herself to the house where she felt most comfortable (Asma: ‘waisey bhi nahi dil chaheta’ (I don’t feel like it [going out])). Her mother stated, ‘She has got used to living alone and as a result she does not want to interact with other people.’ Asma was also reluctant to attend family events because the toilets in their homes were inaccessible. Nevertheless, Asma’s mother encouraged her, at times even insisting that she attended these events, ‘Whenever there is a function or wedding in the family and I ask her to come along … she does not want to … Now I have to force her to come along … But when she goes there, she is fine.’ Mothers also instilled a sense of belonging in their daughters. Rehana’s mother never gave her the feeling of being left out, or that she was less important than her siblings. Her mother said, ‘If we go out for an excursion, we always take her with us … She comes first … We have not left her alone, not even for a day. There is no question of leaving her.’ Similarly, Farhana said: While I was being educated at home, my interaction was limited to wherever my mother used to take me, but that used to be everywhere, even if someone had died. People used to say that we agree that you bring her to weddings, but why do you bring her to places where someone has died. No one actually brings their children to a home where someone has died. My mother said that I do that because I never want her to feel that Mama has gone somewhere and left me behind.

Mothers also resisted negative societal attitudes, which even permeated among other women. Rehana recalled, ‘There was a woman who lived on my way to school … whenever we used to meet her, she always used to discourage my mother a lot. She used to say why are you educating her … there were problems with social attitudes … [she] discouraged my mother that she should not educate me.’ However, Rehana’s mother ignored this view and sent her to school. Interestingly, she took a positive view of the limited interaction her daughter had with neighbours, and said that Rehana (and her sisters) ‘spend most of the time studying’. Given her own lack of education relative to that of the extended family, she set high aspirations for herself in educating her daughters, and said: We [parents] are not educated so we really wanted our daughters to be educated. Their Taya [paternal uncle older than the father] is a 21-grade officer [second

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highest grade in government]. Their Chacha [paternal uncle younger than the father] is a major in the Army, so their children were studying so we thought that we are falling behind (peechey reh gai hain) these families. But now with the grace of God our children are ahead of all these families. Although I don’t have a son, but my daughters with the grace of God are well educated and doing well. But in addition to that all my girls were also fond of studying. It was mainly that we were not educated so we really wanted our daughters to be educated.

The support from the mothers continued, often arduously, even after schooling. After successfully graduating from secondary school, Rehana’s mother helped her find a college that offered the subjects she wanted to study. She arranged for tuition for her daughter and routinely monitored her progress with the tutors. Humeira’s mother helped her daughter to arrange for exams. Supporting their daughters’ education required constant engagement with their daily routine. Rehana’s mother used to travel with her daughter to school on a daily basis, as did Naseem’s mother. Rehana’s mother elaborated: I have never been late for her break. It was only once in 10 years that I was slightly late for her. That was only because I was not well, and fell on the road because my BP [Blood Pressure] was low. That was the first time that she cried in school. I have ensured that she never felt isolated. I used to pick her up during the break time and roam around in the playground where she could watch other children play. I used to drop her to school at 8am and then went back to school at 10am to take her to the toilet. Then I went for the break, then would go back to school to take her to the toilet at 12 noon. Then after the break I used to go again. Finally, I used to pick her when school closed. So I used to go to her school to take care of her at least five times a day.

A bigger challenge for Rehana’s mother was assisting her in the science classes. She had to help during laboratory experiments because the lab tables were too high for Rehana to reach, ‘I had Physics, Chemistry in school. Whenever I needed to do practical, I used to ask my mother to come and help me, and she used to pick me up and hold me while I did my practical,’ said Rehana. As a result, mothers took on a central role in the education of their daughters. Apart from fostering stronger bonds between them, this also made mothers the main contact person for schools whenever there was an issue. For example, Rehana said: They [principal and teachers] used to call my mother. The thing is that the way I have been brought up from the beginning, my mother always used to take care of me. I am not comfortable anyone else taking care of me. So whenever, I had an issue at school, I used to ask my teachers to call my mother.

Mothers also encouraged their daughters to avail of external support. The contribution of STEP’s educational services was vital here. Rehana usually avoided going to these programmes, but her mother pushed her to attend, often upsetting Rehana. Similarly,

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when Asma was not allowed to attend a STEP training programme, her mother ignored the family/father’s wishes and sent her to another city for a weeklong STEP training later. Attending STEP’s educational programmes developed the young women’s’ confidence. ‘Bauhat confidence aa gaya hai STEP janey ke baad’ (she has gained a lot of confidence after joining STEP). Asma’s mother said, which Asma also confirmed: ‘STEP has played a big part in my life. Big role in my life. Before STEP I did not know about anything.’ Asma’s mother played a central role in her interactions with STEP, accompanying her daughter for over four years to attend seminars and events. Overall, the women recognized the critical role their mothers played in enabling their educational journeys. When asked who supported them most in their education, Asma replied, ‘Ami ne (my mother).’ Asma’s mother also encouraged her to study abroad and helped her to search for a scholarship. The mothers’ support was available even when they themselves were not educated. Humeira said, ‘My mother was not well educated … [but she] supports me to a great extent.’ Their support was also present when the family resisted educating the girls. Naseem said, ‘My mother has buhat ziada (hugely) supported me in my education. From her side she did everything in her power … she did a lot for me.’ Rehana’s quote sums up the pivotal role the mothers played in the education of these young women: My mother did everything for me … Ami [my mother] was always there. My education would not have been possible without my mother’s help.

Ways of achieving educational outcomes The unstinting support by the mothers facilitated more than just the acquisition of degrees. Personal, social, and economic and employment gains were the other positive outcomes of this support. All the women had clearly developed an interest in learning. Asma was exploring possibilities for studying further. Rehana enjoyed learning and had developed a strong interest in postgraduate studies. She regularly used computers to search for information, especially on national and international affairs, and actively participated in intra and inter-school activities, such as quizzes, debates, speeches and Naat (poetry) competitions, winning several trophies and prizes. Personal and social gains were also evident. Rehana actively participated in and ‘enjoyed the social life at school’. Asma has developed a strong relationship with the members of STEP, and her mother said, ‘Wherever she goes, she attracts company and people.’ Asma appeared in an advertisement for a multinational company, which raised awareness on the issues faced by people with disabilities. Farhana wanted to pursue the legal profession to make a difference in society. Naseem summed up the young women’s development and confidence by recounting: I have kept myself and developed myself in such a way and did everything that a sighted person can do. I feel that we can do everything, take care of the

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whole house, take care of myself, even to the extent that when my mother was operated, I used to take her to hospital, travel with her, talk to the doctors, take care of her in every way, get the tests done. That is why they don’t feel that I am blind.

Another positive outcome was the generation of employment opportunities for some of the women. Humaira had a job offer at a development project. Naseem was gainfully employed in the non-governmental organization school where she had studied, and financially supported her mother, ‘Us se ghar ka karcha assani se chal raha hai (the cost of running the house has become easy).’ Asma had two job offers in addition to her part-time work at STEP. However, she was facing travelling difficulties. Furthermore, her mother was searching for private funding to build a ramp in the house so that she could easily go to work on a regular basis. Rehana gave one-to-one tuition in maths and statistics in her home, and also worked part time at a senior position in the government. She was able to contribute to the household income, and also aspired to open up her own academy to teach maths and statistics because ‘[it] will give me more economic independence’. The young women also had future aspirations. While Asma wanted to study abroad, Farhana’s ‘main goal is to go in a field that has a relationship with the society’. Rehana said, ‘My aspirations are positive, and there is a lot that I am doing and need to do in future.’ Humaira aspired to work in order to make her mother’s life easier and accomplish her mother’s unfulfilled desires. All these aspirations were not without challenges, which the mothers could do little to change. Given their strong patriarchal contexts, Asma and Humeira faced considerable gender-related issues. Asma stated, ‘My life would have been very different if I were a boy …. [it] would have been very enjoyable (mazzay kei life hoti … barra mazza aata).’ Similarly, Humeira noted, ‘If God gives me a new life, then the first thing that I will ask God will be to make me a boy.’ Asma aspired for more freedom. She said, ‘I don’t have any independent life that I can do something myself. Even if I want to talk to someone at home, I need to take permission from my brother.’ Asma’s mother corroborated this, saying that none of the girls (sisters) were allowed to go out by themselves. These restrictions frustrated Asma, ‘[compared to my brother] I can’t even think of going anywhere. I feel very angry.’ As a result, she excluded herself from the outside world. In addition, most of these women, owing to their disability, faced difficulties in getting married. None of them were married, an issue which Ayesha eloquently highlighted: I actually thought that once I got educated to the highest level, I will be able to overcome my disability-related problems …. I have done the things that were within my control, got educated, overcame barriers in employment, solved my problems, and now I am facing the barrier posed by the society, such as attitudes and other barriers which are beyond my control.

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Discussion This chapter examined how mothers acted as enablers in the education of their daughters with disabilities in the impoverished context of Pakistan. The capability framework for education was applied to highlight the role gender plays in the mothers’ support of their daughter’s education, and to address the inadequacy of the mothers’ enabling or marginalized framing in educational research, particularly in the use of the narratives of young women with disabilities themselves. While, the enabling framing of mothers mainly focuses on their education levels, the marginalized framing emphasizes the barriers they face in supporting their children’s education. These two perspectives on their own are, therefore, unable to capture how mothers navigate patriarchal familial contexts, gather information from extended family members/ non-formal organizations, negotiate access for basic facilities, and provide care and encouragement to facilitate positive outcomes. The study offers interesting insights on the subject, as discussed below. First, the pivotal role of mothers in the education of young women with disabilities is emphasized. The young women noted their mothers’ enabling role as a thread (David et al., 1997) which ran throughout their entire educational journey. This gendered nature of parental involvement (DFID, 2010; Hornby, 2011) was influenced less by the education of their mothers, and more by the encouragement and care provided by the mothers (Warrington, 2013). Mothers’ involvement increased their daughters’ educational levels and their social mobility in education (Chevalier et al., 2010). Even without formal education for themselves, they were able to contribute towards their daughters’ education through resilience and hard work. This suggests that the established enabling view of mothers needs to be extended, to capture how mothers overcome a range of barriers that disrupt the education of women with disabilities in impoverished contexts (Bhambani, 2003; Hammad & Singal, 2015a) Secondly, mothers’ enabling role was influenced by the context they lived within. While they set very high targets for their daughters’ education, these aspirations were closely connected to the sociocultural context (David et al., 1997; Grech, 2015; Hammad & Singal, 2015a, 2015b). Mothers navigated the patriarchal familial norms (Colclough, 2012), resisted societal pressures and negotiated the institutional barriers (Gurung, 2015; Yousafzai et al., 2011) to support their daughters’ education. Mothers within strong patriarchal contexts creatively navigated these structures by interacting with the extended family members and with Disabled People’s Organizations to gain education-related information. Those within weak patriarchal contexts resourcefully negotiated access to educational institutions, and enhanced the everyday experiences of their daughters in these institutions. This suggests that mothers adopted creative strategies, tailored to their contextual realities, thereby adding newer dimensions for the marginalized view of mothers (Veck, 2002). Finally, the enabling role of mothers had its limits in facilitating the educational outcomes of young women. One such limitation was due to the familial context. While mothers in the weak patriarchal contexts were able to facilitate high education levels of their daughters, those in strong patriarchal contexts were rather restricted in this regard. There were other limitations as well. While mothers’ support in the

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weak patriarchal contexts improved both personal and economic outcomes, mothers (and daughters) in strong patriarchal contexts faced considerable gender issues (Colclough, 2012). Mothers had extensive caring responsibilities, which caused overwork, stress and health issues (Minhas et al., 2015), and their daughters faced restrictions on travel and participation in social activities and events. The freedom of movement the mothers gained due to their daughters’ disability (Yousafzai et al., 2011), was countered by structural barriers in achieving social outcomes. In addition, mothers could do little to fulfil young women’s aspiration of marriage due to society’s negative views on disability. This suggests that while gender is more related to strong patriarchal contexts, disability is a societal issue (Hammad & Singal, 2015a; Sen, 2009), which even a strong alliance between mother and daughter could not address. This discussion has implications for the post-2015 Sustainable Development Goals (SDGs). The SDGs renew the commitment towards education for all, including young women with disabilities. The commitment, however, requires an inter-disciplinary framework, and an integrated approach to education, disability and gender, including the education of women with disabilities in Pakistan. First, this requires a focus on mothers as educational enablers for their daughters’ education. Secondly, it involves a recognition of the contexts, in terms of the differences between strong and weak patriarchy, and how these restrict and/or facilitate mothers as educational enablers. Finally, it requires the recognition of the mother-daughter connect through complex norms on disability and gender which provide freedom to mothers, but also restricts this freedom in the deeply relational context of Pakistan.

Summary of key points ●

●

●

This chapter shows the extent to which mothers could enable the educational experience-outcome journeys of their daughters with disabilities in Pakistan. The patriarchal structures provide the context for examining the gendered nature of mothers’ contribution in their daughters’ education. The chapter can contribute towards educational research, policy and practices which are sensitive, relevant and responsive to global and local conditions.

Suggested questions for discussion This chapter raises questions for further discussion and study, especially in impoverished contexts. 1. In terms of educational research: What is the extent to which existing frameworks on education, disability and gender capture the role of mothers along the complex educational journeys of young women with disabilities? 2. With regard to policy: How can educational policy centralize the role of mothers in enabling the education of women with disabilities?

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3. For practice: In what ways can mothers be involved in supporting an equitable and locally relevant application of educational policy for women with disabilities?

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Hammad, T. & Singal. N. (2015a). Education of women with disabilities in Pakistan: Enhanced agency, unfulfilled aspirations. International Journal of Inclusive Education, 19(12), 1–21. Hammad, T. & Singal, N. (2015b). Disability, gender and education: Exploring the impact of education on the lives of women with disabilities in Pakistan. In S. Rao & M. Kalyanpur (Eds.), South Asia and Disability Studies: Redefining Boundaries and Extending Horizons (pp. 197–223). New York: Peter Lang Publishing. Hornby, G. (2011). Parental Involvement in Childhood Education: Building Effective SchoolFamily Partnerships. New York: Springer. Hornby, G. & Lafaele, R. (2011). Barriers to parental involvement in education: An explanatory model. Educational Review, 63(1), 37–52. John, A. (2012). Stress among mothers of children with intellectual disabilities in urban India: Role of gender and maternal coping. Journal of Applied Research in Intellectual Disabilities, 25, 372–382. Khan, F. (1998). Case study on special needs education in Pakistan: The process of inclusion. European Journal of Special Needs Education, 13(1), 98–111. Lari, Z. S. (1992). Special education in Pakistan: A research report. International Journal of Educational Development, 12(3), 245–252. Miles, C. (2002). On working in Peshawar with disabled children and families. Journal of Religion, Disability & Health, 6(2), 145–148. Miles, M. (1992). Concepts of mental retardation in Pakistan: Toward cross-cultural and historical perspectives. Disability and Society, 7(3), 235–255. Miles, M. (1997a). Community, individual or information development? Dilemmas of concept and culture in South Asian disability planning. Disability and Society, 11(4), 485−500. Miles, M. (1997b). Disabled learners in South Asia: Lessons from the past for educational exporters. International Journal of Disability, Development and Education, 44(2), 97–104. Miles, M. (2001). Including disabled children in Indian schools, 1790s-1890s: Innovations of educational approach and technique. Paedagogica Historica, 37, 291–315. Miles, M. B. & Huberman, A. M. (1994). Qualitative Data Analysis: An Expanded Sourcebook. Thousand Oaks, CA: Sage. Minhas, A., Vajaratkar, V., Divan, G., Hamdani, S. U., Leadbitter, K., Taylor, C., Aldred, C., Tariq, A., Tariq, M., Cardoza, P., Green, J., Patel, V., & Rahman, A. (2015). Parents’ perspectives on care of children with autistic spectrum disorder in South Asia: Views from Pakistan and India. International Review of Psychiatry, 27(3), 247–256. Mitra, S. (2006). The capability approach and disability. Journal of Disability Policy Studies, 16(4), 236–247. Mohanty, T. C. (2003). Feminism without Borders: Decolonising Theory Practicing Solidarity. Durham, NC and London: Duke University Press. Mutanga, O. & Walker, M. (2015). Towards a disability inclusive higher education policy through the capabilities approach. Journal of Human Development and Capabilities, 16(4), 501–517. Office for Disability Issues (2010). Involving disabled people. Available online: http://odi. dwp.gov.uk/involving-disabled-people/index.php Pakistan Bureau of Statistics, Government of Pakistan (1998). Population Census Organisation Pakistan. Available online: www.pbs.gov.pk/content/populationcensus.

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Petrie, J. T. & Holloway, S. D. (2006). Mothers representations of the role of parents and preschools in promoting children’s development. Early Childhood Research and Practice, 8(2), 1–13. Reay, D. (1998). Class Work: Mothers’ Involvement in Their Children’s Primary Schooling. London: UCL Press. Read, J. (2000). Disability, the Family and Society: Listening to Mothers. Buckingham: Open University Press. Ryan, S. (2005). ‘People don’t do odd, do they?’ Mothers making sense of the reactions of others towards their learning disabled children in public places. Children’s Geographies, 3(3), 291–306. Sen, A. K. (1990). Gender and cooperative conflict. In Irene Tinker (Ed.), Persistent Inequalities (pp. 123–149). New York: Oxford University Press. Sen, A. K. (1995). Rationality and social choice. American Economic Review, 5(1), 1–24. Sen, A. K. (2009). The Idea of Justice. Cambridge. MA: The Belknap Press of Harvard University Press. Shearn, J. & Todd, S. (2000). Maternal employment and family responsibilities: The perspectives of mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 13, 109–131. Tarar, A. (2012). Mother-Daughter relationship in Pakistani Muslim culture Pakistan. Journal of Social and Clinical Psychology, 10(1), 68–78. Terzi. L. (2003). A capability perspective on impairment, disability and special needs: Towards social justice in education. Paper presented at the 3rd International Conference on the Capability Approach. Italy: University of Pavia. Available online: http://cfs.unipv.it/sen/program.htm Terzi, L. (2008). Capability and educational equality: The just distribution of resources to students with disabilities and special educational needs. Journal of Philosophy of Education, 41(4), 757−773. Thomas, M. & Thomas, M. J. (2002a). Status of women with disabilities in South Asia. Editorial. Available online: http://www.aifo.it/english/resources/online/apdrj/apdrj102/ editorial.pdf Thomas, M. J. & Thomas, M. (2002b). An overview of disability issues in South Asia. Asian Pacific Disability Journal, 13(2), 62–84. United Nations Development Programme (UNDP) (2006). Human development report – Beyond scarcity: Power, poverty and global water crisis. New York. Available online: http://hdr.undp.org/hdr2006/pdfs/report/HDR06-complete.pdf Veck, W. (2002). Completing the story: Connecting relational and psychological processes of exclusion. Disability and Society, 17(5), 529–540. Warrington, M. (2013). Challenging the status quo: The enabling role of gender sensitive fathers, inspirational mothers and surrogate parents in Uganda. Educational Review, 65(4), 402–415. Williams, B., Williams, J., & Ullman, A. (2002). Parental Involvement in Education: Research report 332. London: Department for Education and Skills. Yin, R. K. (2003). Application of a Case Study Research (2nd Edn.). Thousand Oaks, CA: Sage. Yousafzai, A. K., Farrukh, Z., & Khan, K. (2011). A Source of strength and empowerment? An exploration of the influence of disabled children on the lives of their mothers in Karachi. Pakistan. Disability and Rehabilitation, 33(12), 989–998.

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Notes 1 The Global North refers to the fifty-seven countries categorized by the United Nations as having a high human development index rating. These countries are largely in the Northern Hemisphere, and are broadly referred to as rich and developed countries. 2 The Global South refers to the countries of the rest of the world – the marginalized majority that has low human development rankings and is predominantly located in the Southern Hemisphere. These countries are poor, low-income, developing countries, most of which are bound by their colonial past. 3 The research was conducted as part of the author’s MPhil in Educational Research at the Faculty of Education, University of Cambridge.

16

Conclusion Paul Lynch (University of Birmingham), Shruti Taneja Johansson (University of Gothenburg) and Nidhi Singal (University of Cambridge)

Our main aim in putting together this book was to highlight the diverse range of perspectives and views on disability and education in Southern contexts. The fifteen chapters have provided a unique insight into the challenges and opportunities of educating children with disabilities through various contextual and geographical groundings (from preschool through to primary level of education and to higher education) and are embedded in the realities of people’s lives. We have gone some way to reflecting on the global developments that have influenced the education of children with disabilities by attaining insights into the perceptions and experiences of educators and families and in some instances tapping into the experiences of children with disabilities in Southern contexts. As a group of researchers, we are in a privileged position to have access to marginalized and often disempowered groups of children and adults who are often living in very difficult and precarious contexts. We can sometimes expect high levels of commitment and large amount of their time in the hope that these, sometimes unrewarded, inconveniences will lead to direct or indirect changes to their lives and the lives of people with disabilities in similar contexts. Authors, in their chapter contributions, have considered the different theories, programmes and interventions that can have a positive impact on the lives of children with disabilities and their families in Southern contexts. These deliberations have been useful in highlighting avenues for positive change and recognizing the challenges that need to be addressed at different levels in the system. Although each chapter contains a different narrative or discussion, we share common ground in trying to identify reasons or solutions to those challenges that affect their rights to good quality education wherever they live. It is always difficult to draw general conclusions from the contributions, but what is evident from the discussions is a growing need for more evidence of what works and what does not work in different contexts.

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A recurrent theme emerging from the chapters is the need to take more of a holistic approach when considering the lives of children with disabilities and that education as a field of study should not be considered in isolation, particularly when studying the lives of children with disabilities. We should seek solutions with other sectors – health, social welfare and social development. Multisectoral approaches can better respond to the multifaceted needs of a child with a disability whether it be treatment, rehabilitation, counselling and/or social protection. We can no longer limit our engagement with partners and disciplines we feel most comfortable doing research with; rather, we must reach out to those disciplines and sectors that can help us to respond to children’s multifaceted needs. We also acknowledge the important role that non-government organizations play in providing support for the educational inclusion of children with disabilities in Southern contexts. For example, these could include flexible and responsive systems in early childhood development, support through different educational transitional points, cross-sectional partnerships between education, health, social welfare and rehabilitation services.

What are today’s challenges? In taking the debate forward, we fully recognize that the field of education is constantly facing changing demands in times of great upheaval and growing global challenges. In these ever-changing times, disability remains a significant constant factor. It is part of the contemporary human condition, and hence we need to become increasingly disability sensitive to changing global patterns. In recent times, there have been dramatic changes in population in relation to rural-urban migration and the impact of conflict and natural disasters. Clearly, these patterns will effect lives of all people, including those with disabilities. For instance, by 2020, most people in Asia will be living in urban areas, and the same will be true of Africa ten years later (DFID, 2007). Without planning for internal migration, towns and cities will not meet the needs of growing populations including the provision of public services such as education. With increased traffic and pollution levels reaching dangerous levels in large cities, there are increased chances of children developing respiratory diseases and other related illnesses; which could lead to long-term health conditions and the onset of disability. For example, Nairobi is experiencing increased migration, which is having an impact on the water supply and sanitation with only 42 per cent of Nairobi households having access to clean water (Amendah et al., 2014). Disability has, until relatively recently, been largely neglected in humanitarian responses to conflict and natural disasters – beyond the intervention of specific niche of NGOs (e.g. Humanity and Inclusion). This is a key concern in conflict areas where people are vulnerable to injury but are faced with limited access to services. In 2016, the global population of forcibly displaced people reached 66 million; among them, as many as 13.2 million people displaced have disabilities (Women’s Refugee Program, 2017). Although there are global, national policies and organizational agreements to protect and support affected populations including people with disabilities, they often

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lack specific reference to this vulnerable group. More recently, there has been increasing numbers of Rohingya refugees fleeing Myanmar to seek refuge in Bangladesh. Around 625,000 are living in unofficial and makeshift refugee settlements, many hundreds living with severe disability (Women’s Refugee Program, 2017). Their families are struggling to care for them in difficult camp conditions compounding their situation even further. We therefore need to be much more responsive to the changing needs of people with disabilities as we experience increasing uncertain times. As a researcher community, we have a duty to engage in research that may be high risk but also have high gains. Negotiating secure and unfettered access to some of these contexts can be very challenging (e.g. Afghanistan) without adequate consultation with Southern institutions and organizations that understand the context and can help calculate the risks of conducting research in the country. It is therefore critical for potential researchers in Northern and Southern institutions to consider the risks and benefits of working with people with disabilities in challenging contexts.

Negotiating a balance in power between Northern and Southern institutions The co-development of research between Northern and Southern institutions can be contentious if there is an imbalance of power. It is important to take into account the fact that those in the North benefit from an academic infrastructure that enables them to access information and data in a relatively easy way. We can often take for granted the access we have to technology and communication networks all the time. Research evidence of the South and its communication can remain unnoticed by global audiences while the knowledge of Northern communities is reproduced, and as part of this process, academic writing plays a role in the material and ideological hegemony of the West (Canagarajah, 2002, p. 6). Academics in the South are excluded from publications that are not open-access, although there are a small number of journals that only publish open-access (e.g. Disability in the Global South). We acknowledge these difficulties as we tried to aim for an equal or a proportionately greater number of authors from Southern contexts. Initially, we were on the right path to achieving a higher number of chapters from a collection of Southern authors but some experienced difficulties in meeting the peer review criteria – principally around not critically engaging with empirical data in the field to a sufficient extent. We supported contributors as much as possible by providing detailed feedback and advice on ways to improve them, but unfortunately, in a small number of cases, the criteria could not be met by these authors. We hope that this outcome will be reversed in new publications, given the greater demands by donors for more Northern-Southern institutions and Southern-Southern institutions partnering to conduct new research into education and disability. We look forward to reading their research in future open-access journals and other publications. This edited book is far from complete, but we believe it goes some way to starting a serious and much-needed dialogue that we hope will be taken up and built upon by other researchers working in the field of disability, education, inclusion and

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development. We hope to see more debates between theorists, activists (NGOs) and practitioners, particularly in the South. Finally, this collection of chapters has made some inroads into a growing and often disputed field and has tried to contest some of the assumptions that prevent children with disabilities accessing quality education in the South. We hope that the fruits of this book will not only encourage those in the disability field to read the diverse contributions but also encourage students, academics and practitioners in other disciplines to read the chapters and consider how the empirical evidence from the studies can provide national and local solutions. We look forward to hearing about continued debates and new discussions in future published works on education and disability that attest to fulfilling education for all children.

References Amendah, D. D, Buigut, S., & Mohamed, S. (2014). Coping Strategies among Urban Poor: Evidence from Nairobi, Kenya. PlosOne, 9(1). doi:10.1371/journal.pone.0083428. Canagarajah, A. S. (2002). A Geopolitics of Academic Writing. Pittsburgh: University of Pittsburgh Press. Department for International Development (2007). Moving out of poverty – Making migration work better for poor people. Available online: http://www.migrationdrc.org/ publications/other_publications/Moving_Out_of_Poverty.pdf (accessed 14 February 2018). Women’s Refugee Program (2017). Women’s Refuge Commission. Available online: https://www.womensrefugeecommission.org/ (accessed 14 February 2018).

Index A Addlakha, R. 47 ‘adult carer’ 47 Aghaji, A. E. 65 Akakandelwa, A. 251 Albert, B. 52 albinism, inclusive education for learners with 245–61 overview 245–6 in sub-Saharan Africa 246–7 supranational and national policies in Malawi, Botswana and Zambia 247–51 Albrecht, G. L. 8 Ambedkar, B. R. 166 Ametepee, L. K. 252 Anastasiou, D. 252 Aniekwe, C. C. 51, 52 Annual Status of Education Report (ASER) 49, 166 Anthony, J. 146 Anzaldúa, G. 113, 117 APAM. See Association of People with Albinism in Malawi Armstrong, D. 48 Artiles, A. J. 93, 94, 95, 102 ASER. See Annual Status of Education Report Aspfors, J. 184, 185, 188, 196 Association for Persons with Albinism in Malawi 250 Association of People with Albinism in Malawi (APAM) 255 autism, in India overview 147–8 policies and educational programs 148–57 space framework for of children with 149–57 B Bajaj, M. 94 Ball, S. J. 190

Banks, L. 69 Barker, C. 92 Barnes, C. 44 Barrett, R. J. 92 Bartlett, L. 94, 95, 96 Bhatnagar, N. 167 Bhatti, F. 5 Bhutan, comparative case-study complex conceptualization of disability 99 cultural construction of disability in 97–8 disability research, future directions for 102 Education for Gross National Happiness 101 future directions for comparative case studies 102 Gross National Happiness 96 inclusive education and disability in 96–101 National Policy on Special Educational Needs 99, 101 overview 89–90 policy borrowing model 99–100 religious-cultural construction of disability 97–8 Royal Thimphu College 97 social-human rights model 98–9 Bodies of Difference 92 Botswana developing better inclusive practice 259–60 developing practice in inclusive education in 253–9 Molepolole College of Education 253 Revisited National Policy on Education in 1994 249 supranational and national policies for inclusive education 247–9 Boughey, C. 128 Boyle, C. 154–5

314 Bozalek, V. 128 Braathen, S. H. 256 Braun, A. 190 Braunholtz, T. 41 Bray, M. 94 Brezis, R. S. 151 Brocco, G. 246 Brown, A. M. B. 45 Brown, P. 131 Bury, M. 8 C Cardiff Acuity Test (CAT) 77 carer training programme 235–40 carer and child at microsystem, impact on 237–8 for children with visual impairment 236 community, impact on 238–9 perceptions of carers and community professionals 237–40 training package for parents and community workers 235–7 Carew, M. T. 13 Carr, W. 184 Chandna, A. 77 Chappell, P. 50 Chataika, T. 46 Chazema, J. 250 Cheruvalath, R. 169, 170 childhood developmental delay 74–5 childhood disability and barriers to education 69 data collection on 64–70 early childhood developmental delay 74–5 ethics and data collection on 79–81 hearing loss 76 intellectual impairment 77–8 measuring 70–9 mental health disorders 78–9 metric scales of capacity and performance 74 muscular-skeletal impairment 77 objective impairment screening 75–6 prevalence of 64–6 schooling and 68–70 self or proxy reported limitations in functioning 72–4

Index single question to measure disability 71–2 understand experience of children 66–8 visual acuity 76–7 Chilemba, E. M. 250 Choudhuri, M A. 49–50 Chronic Poverty Research Centre 45 community-based child centres (CBCC) 236, 239 community-based rehabilitation (CBR) 270–1 awareness of 275–6 in Uganda and Malawi 271–2 ‘connected body-selves’ 47 consultation of children with disabilities 267–9 awareness of CBR 275–6 CBR programmes 270–2 impairment-related help 276–7 inclusion beyond education 269–70 overview 267 reflections on life 279–82 research in Uganda and Malawi 270–84 views on education 277–9 Contextualizing Inclusive Education 92 critical diversity literacy (CDL) 193 D Dakar Framework for Action, 2000 22–5, 183, 249 Dalal, A. K. 153 Daley, T. C. 150, 152 Danforth, S. 167, 177 Dart, G. 13 Das, A. 157, 167 Das, V. 47 David, M. 291 Davidson, M. 92 DAWBA. See Development and WellBeing Assessment De, A. 4 Deaf in Japan 92 Deluca, M. 13 Demographic and Health Survey (DHS) 72 developing economies, disability in children of 3

Index Development and Well-Being Assessment (DAWBA) 78 Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) 78 DIETS. See District Institutes of Education and Training disability 10 in Asia-Pacific region 3 in children of developing economies 3 commitment to people with 25–6 complexities of 31 Dakar Framework for Action and Millennium Declaration, 2000 23–5 definition 8–10 for 2010 Education for All GMR on Marginalization 30–3 in education targets 26–7 end of Dakar period 33–5 focus on education of children with 3–6 global frameworks, evolution in 21–6 as global research topic 90–4 Jomtien Declaration and Framework for Action, 1990 22–3 learning for children 33–5 post-2015 35–6 poverty and 3 review of 60–4 rights of people with 1–2 Sustainable Development Goals and 1, 2 Disability and Culture 92 Disability in Local and Global Worlds 93 Disability of the Soul, A 92 District Institutes of Education and Training (DIETS) 169 District Primary Education Programme (DPED) 168 Dlamini, M. 50 DPED. See District Primary Education Programme Druk Gyaltsuen 98 Dyson, A. 93, 94, 95 E early child development (ECD) carer and family within larger mesosystem 233

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community and professional processes between micro- and mesosystems 233–4 conceptual framework for study of 231–2 disability in Malawi 227–8 new carer training programme, considerations for 235–40 overview 225–6 policies, structural factors and culture through exosystem 235 professionals or organizations influencing processes through exosystem 234 research study on 228–35 review of early years and visual impairment 227 ECD. See early child development Edgar, B. 90, 101 education, for children with disabilities benefits of 5 of children with disabilities in India 148–9 current status of research on disability in 43–5 evolution in global frameworks 21–6 global declarations for 7 in Global Monitoring Reports 37–6 impact on individuals and national progress 4–6 inclusive 7–8, 25 Jomtien Declaration and Framework for Action, 1990 22–3 lack of 5 probability of employment 4–5 promise of 3–6 quality 24 SDG for, achieving 36–7 spaces of 5–6 status of 42–3 tracking progress of 27–36 educational space 156–7 Education for All 186, 203 Education Management Information Systems (EMIS) 67–8 Education White Paper 6: Special Education–Building an Inclusive Education and Training System 183, 187, 196, 197

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EFA Global Monitoring Reports 28, 34–5 Eide, A. H. 3 Elliott, J. 146 EMIS. See Education Management Information Systems Engelbrecht, P. 246 Everyone Here Spoke Sign Language 92 F Ferrier, F. 134 Filmer, D. 3, 4, 69 Fowler, A. 167 Francisco, S. 184 Fraser, N. 128, 136 Full-Service School (FSS) 187–8, 194, 197 G Gardinier, M. P. 95 GEMR. See Global Education Monitoring Report George, J. 184 Gilbert, C. 77 Girls’ Education Challenge (GEC) programme 210 Global Burden of Diseases study 64 Global Education Monitoring Report (GEMR) 27, 35 global inclusionism 48 Global Monitoring Report (GMR) 6, 21, 27, 41 Global Partnership for Education analysis 34 Global Poverty Action Fund (GPAF) 210 GMCD. See Guide for Monitoring Child Development GMR. See Global Monitoring Report Goble, C. 46 Grech, S. 109, 147 Grinker, R. R. 151 Groce, N. E. 92, 256 Grootenboer, P. 185, 193 grounded inclusionism 48, 147 Guide for Monitoring Child Development (GMCD) 75, 78 Gunnell, J. 13 H Hammad, T. 292 Hanafin, J. 135 Handbook of Disability Studies 8

Harrison, M. 52 Harriss-White, B. 8 Hawking, S. 61 hearing loss 76 holding governments to account 26–7 Hong, E. 246 Hoogeveen, J. G. 47 Hoskins, K. 190 Howell, C. 13 Howgego, C. 44 I ICED. See International Centre for Evidence in Disability IEDC. See Integrated Education of Disabled Children Incheon Education 2030 Framework 22, 25–7 inclusion 8, 133, 189, 198–9 beyond education 269–70 global inclusionism 48 grounded inclusionism 48, 147 people with disabilities into mainstream educational programmes 149 policy for, Indian context 165–6 in quality education 37 theoretical constructs of 177 theorizing microprocesses of 110–12 inclusive education 7–8, 25, 59–82 in Bhutan 96–101 in India 110 Leonard Cheshire Disability’s core elements of 204–5 in Malawi, Zambia and Botswana 253–9 practice architectures of 183–99 role of teachers in 205–7 significance of local context 145–7 social spaces of 195–7 teacher education and development of, in sub-Saharan Africa 251–2 teachers to deliver, preparation of 203–9 transnational (see transnational inclusive education) inclusive principles in South India, application of 165–79 impact of 170–5

Index learning from success stories 175–6 obstacles to progress 167–8 overview 165 policy for inclusion 165–7 professional development for teachers 168–70 Index for Inclusion 91 India, education of children with disability 107–22, 148–9 Action Plan for Inclusive Education of Children and Youth with Disabilities 148 children with autism 147–57 (see also autism, in India) Inclusive Education for disabled at Secondary Stage 148 inclusive principles and practice in schools, application of 165–79 National Policy for Persons with Disabilities 148 oppositional consciousness for teacher education in 120–2 overview 107–9 Rashtriya Madhyamik Shiksha Abhiyan 149 Right to Education Act 149 Right to Free and Compulsory Education Act 165, 169–70 Sarva Shiksha Abhiyan programme 148 teacher preparation for inclusive education in 118–20 US Third World feminism and 112–18 INEE. See Inter-Agency Network for Education in Emergencies Ingstad, B. 3, 92, 93, 256 Initial Teacher Education (ITE) 245 Integrated Education of Disabled Children (IEDC) 168 intellectual impairment 77–8 Inter-Agency Network for Education in Emergencies (INEE) 25, 31 International Centre for Evidence in Disability (ICED) 65, 227 International Classification of Functioning, Disability and Health (ICF) 9, 35, 59, 91 bio-psycho-social approach proposed by 49

317

definition of disability 63 model of disability 62–4 International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10) 78 Introduction to special education 253 J Januja, S. 5 Jeffery, R. 93, 153 Jenkins, J. H. 92 Johansson, S. T. 154 Johansson, T. 7, 13 Jomtien Declaration and Framework for Action, 1990 22–3, 249 Jonas, O. 249 K Kamchedzera, E. T. 250 Karma Phuntsho 101 Kattumuri, R. 157 Kemmis, S. 184, 185, 190, 193 Kenny, M. 135 Kenya 33, 42 IE interventions in 203, 208–17 LogMar methods tested in 77 Kett, Deluca and Carew 13 Kett, M. 13 Key Informant Method (KIM) 65–6 Khera, R. 4 Kohrman, M. 92 Kourkoutas, E. 167 Kozleski, E. B. 93, 102 Kumar, A. K. S. 4 Kuper, H. 12, 69 L Lamichhane, K. 4, 5 Lauchlan, F. 154–5 LCD. See Leonard Cheshire Disability learning, for children disability 33–5 Leathwood, C. 133 LeFanu, G. 8, 47, 91, 93, 146, 147 Leonard Cheshire Disability (LCD) 203 Leonard Cheshire Disability (LCD) inclusive education programme 204–7 Leonard Cheshire Disability Zimbabwe Trust 210

318

Index

Levinson, B. A. U. 94 Liao, J. 5 Liasidou, A. 133 Lloyd, A. 184 Lugones, M. 117 Lund, P. 252 Lwanga-Ntale, C. 9 Lynch, P. 48, 252 M MACOHA. See Malawi Council for the Handicapped Mactaggart, I. 12 Maguire, M. 190 Mahlo, D. 184 Mahon, K. 184 Malawi community-based rehabilitation approach 228, 271–2 developing practice in inclusive education in 253–9 disability in 227–8 National ECD Policy 228 National Education Policy 2013 250 prioritized ECD 227 radio stations in 258–9 Special Needs Education Policy 2007 250 supranational and national policies for inclusive education 247–50 Malawi Council for the Handicapped (MACOHA) 255 Malawi Development Assessment Tool (MDAT) 75, 235 Mander, H. 166 Marcus, G. 94 Massah, B. 252 Matemba, Y. 13 Maudslay, L. 146 Max, R. 95 McDermott, R. 90, 101 Mckenzie, J. 46 McNeela, E. 135 McRuer, R. 92 MDAT. See Malawi Development Assessment Tool medical space 150–2 Meekosha, H. 147 Mehrotra, S. 169 mental health disorders 78–9

mestiza consciousness 113 MICS. See Multiple Indicator Cluster Survey Millennium Declaration 23 Millennium Development Goal (MDG) 21 Minh-Ha, T. T. 112 Mitchell, D. 92, 145 Mji, G. 47 Model Disability Survey (MDS) 73–4 models of disability 60–4 human rights model 61–2 ICF model (bio-psycho-social model) 62–4 medical model 61 social model 61 Mohanty, C. T. 109, 112, 115, 117 mothers in educational research 290 in Global South 290–303 mothers as educational enablers 289–303 overview 289 mothers as educational enablers, in Pakistan 289–303 achieving educational outcomes 300–1 capability framework for education 292, 293 enabling educational experiences 298–300 navigating familial context 295–6 negotiating access to education 297–8 overview 289 Moya, P. 117 Mukhopadhyay, S. 48, 146, 147, 249 Multiple Indicator Cluster Survey (MICS) 72 Murray, S. 92 Musanje, J. 251 muscular-skeletal impairment (MSI) 77 Muthukrishna, N. 13, 46, 194, 198 N Nakamura, K. 92 Namibia 13 Education Management Information Systems in 67 education system of 184 National Disability Policy in 184 practice architectures of inclusive education in 183–99

Index Naraian, S. 13, 157, 167, 177 National Disability Policy 184 National Household Survey (NHS) 72 National Trust Act 148 Nkala, N. 50 Norbu, K. 89 Nuwagaba E. L. 45 O objective impairment screening 75–6 Ochs, K. 99 O’Connell, P. 133 Oculocutaneous type 2 albinism 246 Okubo, T. 4 Oliver, M. 127 O’Meara, J. 250 Otukile-Mongwaketse, M. 249 Owusu-Ansah, F. E. 47 P Pai, G. 95 Pakistan Annual Status of Education Report survey 49 capability framework for education 292–3 Child Functioning Module used in 36–7 education, disability and gender in 291–2 young women with disabilities in 289–303 Pakistan Foundation for Fighting Blindness (PFFB) 293 Pande, N. 153 Parent Evaluation of Development Status (PEDS) 75 Pather, S. 147 PEDS. See Parent Evaluation of Development Status Person with Disabilities Act 148 PFFB. See Pakistan Foundation for Fighting Blindness Phasha, N. 184 Phillips, D. 99 physical space-time 185 PIED. See Project for Integrated Education for the Disabled Piot, C. 95

319

political space 152–4 poverty, and disability 3 practice architectures of inclusive education, in South Africa and Namibia 183–99 critical diversity literacy framework 193 Full Service School 187–8, 193–4, 196, 197 inclusive curriculum 192 intersecting spaces 185 National Policy Options for Educationally Marginalised Children 191 overview 183–4 performing inclusive education 191–5 research contexts 186–7 research study on 187–91 SACMEQ survey 195 ‘sayings’ of inclusive education practice 188–91 social spaces of inclusive education 195–7 Special School designated as a Resource Centre 187–8, 193–4, 196, 197 theory of 184–6, 191 Priestly, M. 91 professional development, for teachers 168–70 Project for Integrated Education for the Disabled (PIED) 168 Pure Tone Audiometry (PTA) 76 R Rai, A. 169 Rajanahally, J. 13 Rapid Assessment of Disability (RAD) 72 reflections on life, as child with disabilities 279–82 aspirations and expectations for future 281 local environment and 280 relationships with others 280–1 Rehabilitation Council of India Act 148 Repacholi, M. 246 research on disability, in field of education alliances and networks for impact of, formation of 50–3

320 based on local realities and priorities 46–8 current status of 43–5 ‘global learning crisis’ and 49 sophisticated research explorations, undertaking 48–50 Reygan, F. 193 Richard, B. O. 146 Riddel, S. 135 Rieser, R. 252 rights, of people with disability 1–2 Right to Education for People with Disabilities Flagship 28 Right to Free and Compulsory Education Act 165, 169–70 Robertson, J. 77 Rose, R. 12, 13 Rosh Pinah Mine 197 Rousso 29 Royal Thimphu College 97 Rule, P. 45, 50 S Sæbønes, A. 217 SACMEQ. See Southern and Eastern Africa Consortium for Monitoring Educational Quality Sadowsky, J. 93 Salamanca Framework of Action 7 Salamanca Statement 249 Samson, M. 4 Sandoval, C. 114 Saravanabhavan, R. C. 168 Saravanabhavan, S. 168 Sarva Shiksha Abhiyan (SSA) programme 148 Sayed, Y. 133, 134 Scarloss, B. 90, 101 Schizophrenia, Culture, and Subjectivity 92–3 Schreiber, B. 131 Schuelka, M. J. 13 ‘scientific age’ 98 SDG. See Sustainable Development Goal Sector Policy on Inclusive Education 184 Seelman, K. D. 8 Sefa Dei, G. J. 184 semantic space 185 Shapiro, J. P. 91

Index Sharma, M. 166 Shevlin, M. 135 Sierra Leone inclusive education interventions in 203, 209–17 disability community in post-conflict 46 universal education in postcolonial 95 Simpson, A. 131 Singal, N. 5, 45, 46, 48, 93, 102, 153, 194, 198, 292 social space 154–6, 185 societal attitudes in sub-Saharan Africa 246 Sood, N. 5 South African Constitution of 1996 183 South African higher education 127–38 access to 128–31 Council on Higher Education 132 ‘epistemological access’ to 130, 134 homogenization 133–4 institutional responses to participation of students with disabilities 131–6 overview 127–8 primacy of education process 130–1 teaching and learning process 130–1 South Africa, practice architectures of inclusive education in 183–99 Southern and Eastern Africa Consortium for Monitoring Educational Quality (SACMEQ) 195 Southern contexts 2, 5, 8, 10–14 space framework, for children with autism in India 149–57 educational space 156–7 medical space 150–2 political space 152–4 social space 154–6 spaces of education 5–6 special educational needs 7 Jomtien Framework to 23 label of 10 language related to 22 notion of 10 terminology of 10 Special School designated as a Resource Centre (SSRC) 187–8, 193–4, 196, 197

Index Special Talent Exchange Programme (STEP) 293, 299–300 STEP. See Special Talent Exchange Programme Steyn, M. 193 Stubbs, S. 52, 257 sub-Saharan Africa albinism in 246–7 teacher education and development of inclusive schooling in 251–2 Sustainable Development Goal (SDG) 1, 21, 41–2, 205, 269 education for children with disabilities 36–7 implications for post-2015 303 Incheon Framework for 25–6 Sutton, M. 94 Swanepoel, D. W. 76 Swartz, L. 46, 51 T Tarar, A. 292 teacher preparation for sociocultural complexity, in India 118–22 oppositional consciousness for teacher education 120–2 teacher preparation for inclusive education 118–20 teachers, preparedness for inclusive education beliefs, emotions and intentions to adopt inclusive practices 216 concerns and teaching self-efficacy 216–17 delivering inclusive education 206–7 in Kenya 208 knowledge about inclusive education 211–13 knowledge, attitudes and practices 204 LCD inclusive education programme 204–7 overview 203 perceived barriers and views of parents 215–16 prior experience and perceived difficulty in teaching 213–14 prior training and school attendance 214 research study on 207–17

321

role in inclusive education 205–7 in Sierra Leone 209 in Zimbabwe 208–9 Teaching Effectively All Children (TEACh) project 36–7 TEACh project. See Teaching Effectively All Children project Thomas, R. M. 94 Tomlinson, S. 44 transnational inclusive education, in India 107–22 affordance of Global South for 109–12 materiality of research and inquiry 109–10 negotiating complexity 110–12 oppositional consciousness for teacher education 120–2 overview 107–9 teacher preparation for inclusive education in 118–20 teacher preparation for sociocultural complexity 118–22 US Third World feminism and 112–18 Travellers and Magicians 89 U Uganda 9, 13, 30 community-based rehabilitation 270–6 listening to children with disabilities in 267–84 population-based surveys in 72 World Inequality Database on Education 32 young women’s education, parental contribution in 289, 291 UNCRPD. See United Nations Convention on the Rights of Persons with Disabilities UNESCO. See United Nations Educational, Scientific and Cultural Organization United Nations Children’s Fund (UNICEF) 9, 68, 70, 91 Care for Child Development training 235–7 module functional domains 73 Multiple Indicator Cluster Survey 72

322

Index

partnership with Washington Group on Disability Statistics 73 ‘State of the World’s Children’ report 63 United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) 1–2, 36, 61, 183, 205 Article 7 268 Article 24 91 Article 31 60 definition of disability 70 description of disabilities 64 Malawi 227 rights of people with disabilities 42 United Nations Convention on the Rights of the Child 247 United Nations Educational, Scientific and Cultural Organization (UNESCO) 67, 91 Framework of Action on Special Needs Education 145 World Declaration on Education for All 183 Universal Declaration of Human Rights 22, 247 Universal Primary Education (UPE) 197 Urwick, J. 146 US Third World feminism 112–18 needs and interests 115–17 oppositional agency 114 world-traveling through narrative 117–18 V Vavrus, F. 94, 95, 96 visual acuity 76–7 visual impairment carers looking after children with 232–5 within microsystem 232–3 review of early years and 227 Vitalaki, E. 167

W Waitoller, F. R. 93, 102 Walton, E. 190, 191, 198 Warrington, M. 289, 291 Washington Group on Disability Statistics 12 White Paper for Post School Education and Training 127 Whyte, S. R. 92, 93 World Bank Report 3 World Conference on Special Needs Education 23 World Education Forum, in Dakar in 2000 22 World Health Organization Disability Assessment Schedule for Children (WHODAS-Child) 78 World Health Organization’s Disability Assessment Schedule (WHODAS 2.0) 72–3 World Report on Disability 9, 45, 50 Z Zambia developing better inclusive practice 259–60 developing practice in inclusive education in 253–9 education system 250–1 radio stations in 258–9 supranational and national policies for inclusive education 247–51 Zeeb, H. 246 Zhao, J. 5 Zimbabwe Global Poverty Action Fund 210 inclusive education in 208–17 Leonard Cheshire Disability Zimbabwe Trust 210 Zuurmond, M. 69