The Social Model of Disability In India: Politics of Identity and Power 2020055392, 2020055393, 9780367677053, 9781003149439, 9780367711238

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THE SOCIAL MODEL OF DISABILITY IN INDIA

This book presents various paradigms and debates on the diverse issues concerning disability in India from a sociological perspective. It studies disability in the context of its relationship with concepts such as culture/religion, media, literature and gender to address the inherent failures in challenging prevalent stereotypical and oppressive ideologies. It traces the theological history of disability and studies the present-day universalized social notions of disablement. The volume challenges the predominant perception of disability being only a medical or biological concern and provides deeper insight into the impact of representation through an analysis of the discourse and criteria for ‘normalcy’ in films from the nineteenth and twentieth centuries. It analyzes the formation of perspectives through a study of the representation of disability in print media, especially children’s literature, comics and graphic novels. The author also discusses the policies and provisions available in India for students with disabilities, especially women who have to also contend with gender inequality and gender-based discrimination. The book will be of interest to scholars and researchers of disability studies, educational psychology, special education, sociology, gender studies, politics of education and media ecology. It will also be useful for educationalists, NGOs, special educators, disability specialists, media and communication professionals, and counsellors. Ranjita Dawn is Assistant Professor in the Department of Education at Loreto College, University of Calcutta, India. She received her doctorate in Social Psychology of Education from the Zakir Hussain Centre for Educational Studies, Jawaharlal Nehru University, New Delhi, India. She is one of the leading scholars working in the area of disability studies in India. She has been associated with organizations like Blind Relief Association and National Association for Blind, New Delhi. She has authored numerous research papers for both international and national journals, and four books including Psycho-Social Dynamics of Blind Students (2011), Visual Impairment (2015), Perception and Portrayal of Women with Disabilities: Remapping their Identity (edited book, 2017) and Educational Achievement

and Psychosocial Transition in Visually Impaired Adolescents (2017). She has been the recipient of various prestigious awards such as the Indian Council for Social Science Research Doctoral Fellowship, National Scholarship Award, Dr. Neelu Sanghvi Sancheti Memorial Medal for Graduation and felicitated by The Calcutta Corporation Co-operative Credit Society. She also has previous experience working as Research Fellow at NCERT, New Delhi.

THE SOCIAL MODEL OF DISABILITY IN INDIA Politics of Identity and Power

Ranjita Dawn

First published 2021 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 605 Third Avenue, New York, NY 10158 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2021 Ranjita Dawn The right of Ranjita Dawn to be identified as author of this work has been asserted by her in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging-in-Publication Data Names: Dawn, Ranjita, author. Title: The social model of disability in India: politics of identity and power/Ranjita Dawn. Description: Abingdon, Oxon; New York, NY: Routledge, 2021. | Includes bibliographical references and index. | Summary: “This book presents various paradigms and debates on the diverse issues concerning disability in India from a sociological perspective. It studies disability in the context of its relationship with concepts such as culture/religion, media, literature, and gender to address the inherent failures in challenging prevalent stereotypical and oppressive ideologies. It traces the theological history of disability and studies the present-day universalized social notions of disablement. The volume challenges the predominant perception of disability being only a medical or biological concern and provides deeper insight into the impact of representation through an analysis of the discourse and criteria for ‘normalcy’ in films from the nineteenth and twentieth centuries. It analyzes the formation of perspectives through a study of representation of disability in print media, especially children’s literature, comics, and graphic novels. The author also discusses the policies and provisions available in India for students with disabilities, especially women who have to also contend with gender inequality and gender-based discrimination. The book will be of interest to scholars and researchers of disability studies, educational psychology, special education, sociology, gender studies, politics of education, and media ecology. It will also be useful for educationalists, NGOs, special educators, disability specialists, media and communication professionals, and counsellors”– Provided by publisher. Identifiers: LCCN 2020055392 (print) | LCCN 2020055393 (ebook) | ISBN 9780367677053 (hardback) | ISBN 9781003149439 (ebook) Subjects: LCSH: People with disabilities–India. | Sociology of disability–India. Classification: LCC HV1559.I4 D39 2021 (print) | LCC HV1559.I4 (ebook) | DDC 305.9/080954--dc23 LC record available at https://lccn.loc.gov/2020055392 LC ebook record available at https://lccn.loc.gov/2020055393 ISBN: 978-0-367-67705-3 (hbk) ISBN: 978-0-367-71123-8 (pbk) ISBN: 978-1-003-14943-9 (ebk) Typeset in Sabon by Deanta Global Publishing Services, Chennai, India

CONTENTS

List of Tables vi Foreword vii Preface ix Acknowledgements xiv Abbreviations xv 1 Sameness and Difference: Transcending the Gap

1

2 Disability and Representation

13

3 Disability, Religion and Culture

29

4 From Dosti to Margarita with a Straw: Representation of Disability in Indian Cinema

50

5 Disability, Children Literature and Other Narratives

70

6 ‘Disability Communication’: Media Ecology and Disability

88

7 Identities Embedded in our Bodies: Gendered Constructions at Work

101

8 Accessibility to Education and Disability: Challenging the Ableist Structures

117

9 ‘Our Identity, Our Voice’: The Evolving Face of Disability 140 157 189

References Index v

TABLES

  7.1 Distribution of Working Age Persons with Disabilities by Usual Activity Status (15 to 64 years) in 2002 112   8.1 Enrolment percentage of CWDs in elementary education 120   8.2 Literacy rate among persons with disabilities 120   8.3 Comparison of literacy status of persons with disabilities by nature of disability in India Census, 2011 121   8.4 Enrolment percentage across grade wise based on the nature of disability 122   8.5 Enrolment status, gender and disability in India 123   8.6 Gender disparity in ALIMCO/ADIP beneficiaries Under ADIP-SSA Scheme, (6–14 years) 125   8.7 Specific provisions for children with disabilities in state RTE rules 128   8.8 Percentage of schools with disabled-friendly toilets 130   8.9 Comparative table of Enrolment of PWDs in various types of universities, affiliated and constituent colleges (2015–2016 to 2018–2019) 135 8.10 Enrolment of CWSN by stage of school education, all India year 2014–2017 137

vi

FOREWORD

The predominant models of disability that are perceived in India in current times move between the charity model and the medical model. Our legislation adopted a new definition of disability with the passage of the Rights of Persons with Disabilities Act in 2016. However, in practice, India remained in a strange mode with charity-medical-social models all mixed-up within. In reality, disability is a complex issue with multi-dimensions. It is important to understand that the concept of disability changes with the flow of time. How disability will be perceived differs from one country to another too. First and foremost, we need to acknowledge that disability, just like gender, is a fluid concept. Once we recognize this, the inclusion of disability is easier in our day to day life. In this context, we need to remind ourselves of the United Nations Convention on Rights of Persons with Disabilities (UNCRPD), which has been ratified by India. The preamble to UNCRPD acknowledges that disability is ‘an evolving concept’, but gives stress on the fact ‘disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others’. Defining disability as an interaction means that ‘disability’ is not an attribute of an individual. So, it is important to work on the social barriers, finding ways to remove them so that better social participation is possible. In this context, it is important that Indian Disability Movements as well as disability studies explore more on the Social Models of Disability. In this context, I am very glad that Dr. Ranjita Dawn is bringing out a book named The Social Model of Disability in India: Politics of Identity and Power. Dr. Dawn has very meticulously divided this important book into nine chapters. She approaches disability as a theme in these chapters with varied lenses—from the gaze of religion to that of children’s literature, from a gendered approach to ableist structures, she includes many different dimensions. In short, diversity is the crux of this book. This book will be an important addition to the evolving field of disability studies. An on-going

vii

F oreword

pandemic, lockdowns at various stages and different spaces are teaching us new lessons every day. At the same time, we are realizing that the outer world which remained ‘inaccessible’ for a majority of disabled people till date, may become inaccessible to ‘non-disabled’ people too for an indefinite time. What we accepted as our daily routine can come to an abrupt halt with a few hours’ or days’ notice. Pandemic also taught us to question what is the norm, what is normal. It is forcing us to introspect whether we find a ‘new normal’ closer to the realities of the daily lives of disabled people. In this context, a book on the Emerging Identity of the Social Model of Disability is not just welcome, but thought-provoking. We hope this book will create interest not only in academia but within social movements too. Shampa Sengupta Director Sruti Disability Rights Centre 17.11.2020

viii

PREFACE

‘Life is not determined by consciousness rather the consciousness by life’ (Marx and Engels, 1845–1846). We gradually tend to develop our own consciousness according to our perception of common socio-cultural variables of life. Within the social construct of disability, isolation and oppression become evident through the double-layered hierarchical power relation between the disabled and the able-bodied and further between men-women and able-disable. Prevalence of such extremities challenges the very concept of inclusion. It subjects the prevalent social structures to critical scrutiny, urging the need to go beyond the prerequisite norm of mere adaptation towards transforming the system itself which would instead acknowledge, accept and respect diversity. This necessitates building up strong deliberations on the need to establish a link between the varied needs of diverse sections of society and to address the basic structures of inequality in society. There is the need to initiate a critical analysis of several policies and to make a judicious attempt not only to highlight their chief assurances but to challenge and address some of their shortcomings. Prejudice in our society is associated with the recognition of difference and an integral part of it is the concept of normality. Morris had so aptly stated that the idea of normality is inherently tied to ideas about what is right, what is desirable and what belongs to it. This certainly paves the way to initiate myriad discourses on disability in the context of culture, religion, gender, literature and media. Culture as the basis of social representation has been exerting domineering impact in moulding peoples’ identities or self-representations across the globe. The words ‘disability’ and ‘culture’ are each value-laden, charged with emotion in almost every culture. People with disabilities tend to analyze their experiences in light of the existing meanings and practices prevalent in society and the matrices of recurring themes in representation of disability and discourses of ‘normalcy’. This often results in them internalizing the prejudices held by the dominant group—the acceptance and incorporation of ‘their values about our lives’ and hence become ‘slave of their archetypes’.

ix

P reface

The Foucauldian discourse of power-structure aptly justifies ‘authoritarianism’ of the society to uphold the formulation and execution of norms and hence imposing ‘normalcy’ upon its citizens in order to achieve its intended social equilibrium. The post-consumerist society, wherein the ‘bio-power’ of the nation-state has been replaced by the ‘market bio-power’, has resulted in the objectification of the biological or psychic deficiency of a person. While on one hand there has been the dominance of the charity model subjecting them to a sympathetic treatment, the popular tendency of the mediated market is to glorify the ‘disabled’ as ‘differently abled’ but at the same time maintaining a secured and restricted range to keep the recognized participation of the ‘able’ part of the society unaffected. Personal experiences as endorsed by the social model have ushered in a paradigm shift in conceptualizing and analyzing disability. Lack of scope for people with disabilities to have control over their own representation projected a discriminatory form of representation. The invisibility of the disability identity necessitated the need to adopt a non-tragic view of disability and impairment all over the world, which encompasses positive social identities, both individual and collective and to be based on narratives of persons with disabilities. Media images and stories have the power to influence thinking and to establish social norms. People with disabilities have been subjected to misrepresentation and under-representation in media news and entertainment segments. Media coverage is often influenced by erroneous ideas and as one engages in a comprehensive interpretation of representation of persons with disabilities, particularly women with disabilities, the media tends to evaluate and reflect the strength of patriarchal order and its alignment of power within the gender roles. An in-depth understanding of this issue is essential, for the media acts as a strong force to counter wrong views and value and plays a pivotal role in changing perceptions, eliminating discrimination and raising public awareness. Formulation of any effective policy and legislation mandates that it ensures protection and upholding of rights and designing programmes for empowerment of different groups of citizens. A critical overview of various educational developments and trends, different perspectives and approaches, policy perspectives, and educational practices has resulted in ambiguous piecemeal initiatives, insurmountable backlogs and barriers. This becomes a major challenge for the social system itself within which education is considered to be a major tool for ensuring empowerment. As one thinks about these varied issues a plethora of questions arise like whether the notion of discrimination has been justifiably understood? Have inequities experienced by persons with disabilities within the social system been addressed despite the continuous slogan of ‘equal rights to access’? Has the very notion of inclusion been even understood in its absolute spirit? The book makes an effort through its nine chapters to address some of these vital concerns. x

P reface

The concept of disability has been subjected to varied representations and interpretations from the medical model to the social approach. Chapter One on ‘Sameness and Difference: Transcending the Gap’ highlights marked changes in paradigms for defining and understanding the diverse expressions and manifestations by the different theories which have led to contentious debates among disability studies scholars. It addresses the contextualized debates surrounding theological history and the relationship between present-day universalized social notions of disablement and theological discussions, the social construction of disability, the dialectical play of power which manifests itself in the form of a ‘gaze’ of others that subjects one to objectification and internalization to the subtle cultural factors that determine standards of normality resulting in the exclusion of persons with disabilities from full participation in society due to nonconformance to the standards of the ‘able-bodied’. Chapter Two on ‘Disability and Representation’ explores the social constructivist approach to disability. Exploring the association between disability and the notion of being socially unacceptable, wherein a number of cultural stereotypes further perpetuate this linkage, the chapter intends to understand and analyze the connections between various modes of representation of people with disabilities, identify the underlying network of characteristics rather than the reductionist approach which delimits the characteristics and distils the complexity into measurable and tangible components. It provides a brief overview of the role of each of these systems/mediums and the intersecting relationship and subsequent impact that Religion, Culture, Media and Literature can have on the lives of people with disabilities. Chapter Three titled ‘Disability, Religion and Culture’ reviews representation of disability in Indian culture with reference to Indian religion and the role it can play towards effective disability awareness interventions. Culture as the basis of social representation has been exerting a domineering impact on moulding peoples’ identities or self-representations across the globe and has more serious implications as people with disabilities may analyze their experiences in light of the existing meanings and practices prevalent in society. It addresses the milieu of recurring themes representing disability and discourses of ‘normalcy’ embedded within the Indian Religious discourses and the dominant role they exert in accentuating an inconsequential image and attitude wherein ‘disability’ is reduced to being perceived as punitive, dependence, disequilibrium or social misfit. The chapter analyzes the theoretical outlook based on the social constructivist approach and has been looked into from the view of three religions: Hinduism, Islam and Buddhism. Chapter Four on ‘From Dosti to Margarita with a Straw: Representation of Disability in Indian Cinema’ argues that social representations play a dominant role in the structuring of identities or self-representations of individuals including people with disabilities which causes one to analyze their xi

P reface

experiences in light of the existing meanings and practices prevalent in society. ‘Disability’ often becomes a condition subject to neurotypical display and narrative coding in the films in the context of India whereby recurring themes in the representation of disability and discourses of ‘normalcy’ in films in the nineteenth and twentieth century endorse a reductionistic attitude. It will especially seek to analyze the theoretical outlook based on the social model of disability, a perspective that includes specific analyses of the representation of persons with disabilities within the popular culture particularly in Hindi, Bengali and other regional films. The chapter argues that the idea of disability in mainstream contemporary cinema is primarily oriented towards a perspective within the spectrum of which it has become a speculative fantasy and a vehicle for public consumption thereby reducing the status of people with disabilities to a present preferred ‘enigmatic’ condition. Chapter Five on ‘Disability, Children Literature and Other Narratives’ critically analyzes children literature, comics and graphic novels from the theoretical field of disability studies. It attempts to identify how they help to foster the understanding of disability. Numerous themes emerged from the discourse analysis of texts such as perception and definition of disabilities, inquiring and reviewing notions of normalcy; idealizing disabilities; relating with characters and also how societal attitudes, beliefs and stereotypes play into their interpretations of literature. Analysis reveals that while some of the texts position disability as an identity category and argue for inclusivity and accommodation, authors, illustrators and publishers of literature, comics and graphic novels often fail to provide a realistic representation of people with disabilities. It strongly argues that focused and more sensitized approach can help to make these extremely effective media medium/agencies for not only disseminating the right facts but also foster healthy attitudes among children and youth. With the texts and graphic novels becoming more apparent in school curriculum, it is the responsibility of authors to carefully analyze the content in light of the disability studies perspective. Chapter Six on ‘“Disability Communication”: Media Ecology and Disability’ explores the interlocking relationship between media ecology and theology. The author believes that just as media ecology can bring insight to theology, theology can also enlighten our understanding of media ecology. Coming in of the print media has ushered in a social revolutionary force characterized by quick production on a regular schedule and an open channel of communication and added elements of speed, flexibility and quality. The chapter critically looks into the symbiotic relationship among print media, alternative media and disability. Though it is undeniable that new time has ushered in the need for new developments it is imperative that the media system, particularly print media, needs to shoulder moral and social responsibility. It needs to be designed in such a manner so as to promote the expression of diversity by being publicly accountable and be broadly representative of the society it serves. Its constituent parts need to be so xii

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organized in varied ways so that they can address issues concerning people with disabilities as well as engage them actively in the process. Chapter Seven titled ‘Identities Embedded in Our Bodies: Gendered Constructions at Work’ highlights how research in disability studies fails to highlight the manner in which concepts of disability, gender and the underlying dynamics of power skillfully traverse and cast an irrefutable impact on each other. Gender inequality, discrimination and injustice may assume a discriminative form and infiltrate all the stages in the lives of women often resulting in the denial of sexuality and sexual rights, disparity, increasing violence and abuse. The chapter addresses the problem of sexual assault of women with disabilities in the Indian context, highlighting loopholes in the Indian legal system and suggesting possible strategies to reinstall their position in a community-based rehabilitation setting. The chapter also discusses discrimination prevalent in allied areas of political participation, education and employment of women with disabilities. The educational system constitutes a powerful tool to build a knowledgebased society. It forms the conduit that opens up access to employment, poverty alleviation and social inclusion. Chapter Eight on ‘Accessibility to Education and Disability: Challenging the Ableist Structures’ addresses the gulf which has become much evident between stated principles and statutory equality, on one hand, and real equality, on the other has led to wide disparities in the manner in which persons with disabilities are perceived. Inequities and discriminatory attitude pervade the field of education and piecemeal efforts which need to be subjected to closer scrutiny. The chapter examines all these through a critical analysis of various policies such as the RTE Act, RPwD Act etc. It makes a critical analysis of the policies and provisions available for students with disabilities especially women with disabilities in India highlighting both the achievements and the challenges that confront their education from structural arrangements to their psychosocial dimensions. The chapter strongly advocates the necessity for undertaking unfaltering measures to reaffirm not only equal access to education but rather the implementation of the policy of inclusion in its truest sense. Chapter Nine on ‘“Our Identity, Our Voice”: The Evolving Face of Disability’ bases its argument on the premises that although metaphorical representations usually tend to construct the body as a functioning whole which delineates and constitute that body’s integrity, it is those same exemplifications that become highly debatable and conspicuous especially in case of bodies that deviate from the so-called ‘norm’ of being ‘able-bodied’. Scholars of disability studies are increasingly emphasizing on the need to engage in and depend on narratives and autobiography. However, it is imperative to infuse different kinds of texts; amalgamate diverse methods of analysis and theoretical framing in contemporary disability life writing so that it possesses the power to challenge stereotypical and oppressive ideologies predisposed to the normative structure and the criteria of normality and able-bodied. xiii

ACKNOWLEDGEMENTS

At the very outset a special word of appreciation for my family members. There are no words sufficient enough to express love and gratitude for my family members, my mother, my sister, my brother, son Sachdeep and niece Nikita for their tremendous support. I would like to thank them for being there for me throughout my life and for everything they have done for me. This book would never have materialized without their love, presence and sacrifices. I extend my sincere gratefulness to each and everyone for the rich experiences they have given me which has enabled me to undertake this work and complete it. A special mention of gratitude to Late Dr. G. N. Karna, who has been an inspiration and association with him has been a lifetime learning experience. My gratitude to Ms. Shampa Sengupta for her encouragement. Sincere gratitude is also due to one and all whose association has made this work possible. I also extend my gratitude to Routledge, Taylor & Francis for undertaking the publication of the book.

xiv

ABBREVIATIONS

AIIMS AISHE ALIMCO CBFC CWSN DISE DPEP HEPSN

All India Institute of Medical Science All India Higher Education Artificial Limbs Manufacturing Corporation of India Central Board of Film Certification Children with Special Needs District Information System for Education District Primary Education Programme Higher Education for Persons with Special Needs (Persons with disability) HBE Home-based education HRLN Human Rights Law Network IE Inclusive Education IECYD Inclusive Education of Children and Youth with Disabilities IEDC Integrated Education for the Disabled Children IIM Indian Institutes of Management IIT Indian Institutes of Technology INS Indian Newspaper Society JIPMER Jawaharlal Institute of Postgraduate Medical Education and Research MHRD Ministry of Human and Resource Development NCERT National Council for Educational Research and Training NCF National Curriculum Framework N.C.P.E.D.P National Centre for Promotion of Employment for Disabled People NCRPD National Committee on the Rights of Persons with Disabilities NCTE National Council of Teacher Education NDN Named Data Networking NGO Non-Government Organization NPE National Policy of Education NSC National Statistical Commission

xv

A bbreviations

NSSO OBC PCI PIED PWD RCI RPWD RTE SSA SC ST TEPSE UEE UGC UNCRPD UNESCO UNICEF UPIAS WWD

National Sample Survey Organization Other Backward Classes Press Council of India Projected Integrated Education for the Disabled Persons with Disabilities Rehabilitation Council of India Rights of Persons with Disabilities Act The Right of Children to Free and Compulsory Education Act Sarva Shiksha Abhiyan Scheduled Caste Scheduled Tribe Teachers Preparation in Special Education Universalization of Elementary Education University Grants Commission United Nations Convention on the Rights of Persons with Disabilities United Nations Educational, Scientific and Cultural Organization United Nations Children’s Education Fund Union of the Physically Impaired Against Segregation Women with Disabilities

xvi

1 SAMENESS AND DIFFERENCE Transcending the Gap

Categorizing Disability as an Identity: A Symmetrical Sameness or an Asymmetrical Difference The issue of ‘exceptionality’ has always been considered as synonymous to being associated with ‘stigmatization’, ‘exclusion’ and ‘isolation’ of individuals considered exceptional or ‘different’ and subjecting them to marginalization in income, education, employment, relationships and other facets of life. Disability has also been perceived as a neglected category not only with regard to social policies but also in academic researches where class, race, gender, etc., were accepted as the criteria to delineate and bring the focus on to the ‘excluded’ sections of society. They have represented a segment of the population that is most backward, least served and grossly neglected, having been customarily denied their right to self-assertion, identity and development. It is quite dismal that although research evidence also prove that no two disabilities are similar in nature, people with any form of disability continue to be treated as a separate category of people with characteristics similar to each other but different from the rest. Though it is difficult to generalize the patterns of historical representations of disability in literary, artistic and visual media due to differentiations among cultures in giving meaning and form to it, a survey of disability representations helps us to visualize the extent to which human differences posed substantial conflicts for all communities. While for some like Nietzsche, the disabled were ‘parasites’ worthy of ‘extermination’, for others they were objects of humour. In societies where economic survival was difficult, elimination of such people was considered justified since they were regarded as weak and dependent members and hence a liability to the society. Fraser (1997) posits gender as one such bivalent collectivity which signifies those excluded communities that are marked out both by the politico-economic and the cultural structures of society. Hence such groups are disadvantaged both by ‘socioeconomic maldistribution and cultural misconception in forms where neither of these injustices is an indirect effect of the other, but where both are primary and co-original’. Elaborating on 1

Sameness and Difference

Fraser’s categorization, Hugemark and Roman (2002) mentioned that persons with disabilities are also another bivalent collectivity because ‘the disadvantages facing disabled persons are rooted in the economic structure as well as in cultural beliefs, norms and attitudes’. The consequence of this bivalence is that ‘collectivities of disabled persons need to simultaneously claim their specificity and deny it’ (ibid.: 12). The individual approach to disability and its narrow and reductionist nature failed to consider the significance of psychological and sociological causes resulting in disabling conditions, thus causing individuals to feel receptive, passive and compliant which promotes human helplessness. Such representations ultimately portray subjugated bodies not only as inadequate or unrestrained but at the same time as redundant and expendable. Bodies marked and selected by such systems are targeted for elimination by varying historical and cross-cultural practices. Moreover, the medical model’s insistence on connecting impairment and disability causes has made some disability studies scholars ignore the critical aspects of living with something that creates a barrier to life (i.e., impairment), that resides within the body and that has nothing or little to do with societal barriers (i.e., disability). The arrival of a social model provided much relief as it fosters a more humane view of disability. Reeve (2004: 83–84) argues that an extended social model that includes the detailed experiences of individual disabled people’s experiences of disability makes room for the discussion of the ‘psycho-emotional dimensions of disability’. Reeve (2004: 87) supports the notion of internalized oppression as a perilous factor, resulting from the incorporation of the social values and prejudices held about disabled people. This form of oppression affects disabled people’s self-esteem and has the danger of shaping disabled people’s thoughts and actions. Reeve (2004: 89) states that she considers internalised oppression to be one of the most important manifestations of psycho-emotional disablism because of its unconscious and insidious effects on the psycho-emotional well-being of disabled people and because it has a direct impact on restricting who someone can be. The interactionist perspective reinstated the role of ‘significant others’, which Scott (1969) referred to as ‘those people who have the greatest influence on an individual’s evaluation of himself and who have the greatest impact on his acceptance and rejection of social norms’, and facilitates the manner in which people with disabilities give shape to their ‘self’ (Cooley, 1902; Mead, 1934). Cooley (1902) maintained that an individual develops his conception of the self by way of imagining what others think of him, by way of a ‘looking glass’ process. Later expanding upon Cooley’s looking-glass self, Mead 2

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(1934) held that self-concept arises through social interaction to anticipate how others’ reaction can cause an individual to behave accordingly and to therefore perceive the world as the ‘others’. Hence Mead (1934) also emphasized the aspect of self being social and held that an individual comes to know about himself or herself by role-playing. However, the nature of interaction could extend from one of acceptance and compassion to one of labelling and stigmatization. Referring to the concept of stigma, Goffman (1969) maintained that the physically impaired, those with mental disorder, homosexuals and members of racial and religious minorities are viewed by the society as ‘not quite human’ but as deviants from the ‘anticipated norms’ (Vernon, 1999). The stigma attributed brings along with it a certain negative connotation that prevents individuals with disabilities from being treated at par with their non-disabled counterparts. In relation to this, it is imperative to review the connotation of the term ‘minority’ and for those regarding disability as difference and as a ‘minority group’. Too often ignorance of minority and identity-based work has resulted in the term ‘minority’ being used to reflect a small percentage of the population or a particular culture. Alcoff and Mohanty (2006) in Identity Politics Reconsidered have challenged this and provided a critical clarification by stating that: Our working definition of ‘minority’ refers to power rather than numbers; it seeks to connect contemporary uses of this crucial term with older debates about the nature and goals of democracy, especially since in formal political democracies power is not shared equally and social groups (defined by gender, race, or sexuality, or disability, for instance) often have unequal access to it. As we are combining a discussion of broadly different movements and programs of inquiry, ‘minority’ is a convenient way to incorporate the diversity of differences and forms of oppression we are concerned to bring into dialogue. (p. 7) The rise of Postmodernism challenged the existence of ultimate truth which could be discovered through reason and rationality. The Postmodernist perspective later applied to the study of disability resulted in the formulation of a radical sociology of impairment. Postmodernists like Foucault (1973), while studying the power exercised by ‘normal’ people over people with disabilities, reasserted this perspective. Modernity according to them had a pervasive capacity to produce strangers. The limits of tolerance and conformity provided the basis for constructing the aspects of strangeness, while modernity lends support to homogenize and annihilate the differences it invariably produces. The two major viewpoints existing in the generic construction of stranger in modernity regarding people with disabilities are the anthropophagic (assimilationist) strategy by way of the segregationist 3

Sameness and Difference

policies and the anthropoemic (exclusionary) strategy by way of community care. However, both the strategies were an outcome of powerful ‘ill to order’, according to which impairment is constituted in terms of invalidation. The concept of stranger that resulted from categorization and normalization of the propensities of knowledge was argued by Foucault (1973). According to him, the ‘gaze’ manifests itself more in institutional forms of domination and regulation than in the oppressiveness of intercorporal relationships. Self-surveillance, by which people develop an awareness of how they are through the gaze of others and then modify their behaviour, affects both disabled and non-disabled people. Under such circumstances people with disabilities are subjected to oppression wherein they internalize the prejudices and assumptions held by their non-disabled counterparts. Foucault (1971, 1976) held that medicine and psychoanalysis in addition to the penal system provide examples of disciplinary and regulatory control leading to the criterion of new norms. It is diffusion of the medical discourse that has enabled the medical model view of disability to become widespread at all levels of the society, affecting the manner in which institutions from the government to industry treat disabled people (Chadwick, 1996). According to Foucault: The dominant society (epitomized) the enclosed, segmented space, observed at every point, in which the individuals are inserted in a fixed place, in which all events are recorded, in which the slightest movements are supervised … in which power is exercised without division, according to a continuous hierarchical figure, in which each individual is constantly located, examined and distributed among living beings, the sick, and the dead. (1977: 197) In this relation, ‘normal’ people use the power of fixing, which Sartre (1958) referred to as ‘gaze’, on the disabled people for not conforming to what they consider ‘valid’ behaviour. Sartre (1958) was concerned with the dialectical play of power which manifests itself in the form of ‘gaze’ of others that subject one to objectification and internalization. ‘Gaze’ for him was a ‘constituent power’ i.e., the power to fix an identity or to ‘condemn’ an individual identity wherein the absolute freedom of the solipsistic self is displaced by spatialization and temporization. In other words, the experience of being looked at by others indicates denial of ‘transcendence’ and transformation into a ‘degraded consciousness’. This is also applicable in case of the disabled where the ‘steady and corrosive gaze’ of the non-disabled others institutionalized in medicine highlights the corporeality of ‘truth’ and ‘perfection’ of normality subjects and stigmatizes the impaired for lack of wholeness, coherence and unity. Sartre (1982) referred to this gaze in the ‘Critique of Dialectical Reason’ as the ‘praxis of oppression’, which is socially constructed and through which the disabled people experience an 4

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act of ‘invalidation’, being reduced to the status of an object itself and condemned to an ‘identity’. In the context of India, Addlakha (2011) mentioned that Historically in India as elsewhere in the world, there has been a deeprooted cultural antipathy to persons with disabilities. Throughout the ages the disabled have been looked down upon with disdain, almost as if they were sub-human. They have been portrayed as medical anomalies, helpless victims and a lifelong burden on family and society. (p. 9) In The Rejected Body: Feminist Philosophical Reflections on Disability, Wendell (1996) examines how Western philosophical conceptions of the body as separate from and a hindrance to the mind inform contemporary anxieties about bodies ‘out of control’ in general and disabled bodies in particular. The prevailing Western view, as Wendell explains, associates normalcy with the exercise of proper discipline and control over the body. Wendell regards disability as socially constructed and elaborates on it as ‘In ways ranging from social conditions that straight-forwardly create illness, injuries and poor physical functioning to subtle cultural factors that determine standards of normality and exclude those who do not meet them from full participation in their societies’ (p. 36). Morris (1997) in Pride and Prejudice mentioned that One of the biggest problems for disabled people is that all these undermining messages, which we receive every day of our lives from the non-disabled world which surrounds us, become part of our way of thinking about ourselves and/or our thinking about other disabled people. (p. 19) She expressed her discontent by arguing that non-disabled people feel that our differentness gives them the right to invade our privacy and make judgements about our lives. Our physical characteristics evoke such strong feelings that people often have to express them in some way. At the same time they feel able to impose their feelings on us because we are not considered to be autonomous human beings. (23, 24) Based on his own experiences and those of other people with disabilities, Finkelstein (1980) maintained that for centuries able-bodied people have made 5

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decisions for the disabled, ranging from deciding on an appropriate behaviour pattern for them by means of a rehabilitation programme to designing equipment for them with assumed expertise. This resulted in depriving people with disabilities of the right to question the objectivity of the able bodied for making decisions on their behalf. He referred to this as the Social Barriers model of disability, according to which disability results due to social and attitudinal barriers constructed by a world built for the able bodied. According to Finkelstein, the construction of boundaries among the able bodied and people with disabilities are also handicapped by discipline. Disability according to him failed to hold the focus as a subject or course of study other than remaining as an issue of discussion and a result of a human malfunction. Emphasizing on the role played by the society in disabling blind people using the prior social model of disability literature, French (1993, 1999) argued that conflicting discourse resulted due to sighted people’s definition of ‘acceptable’ and ‘normal’ behaviour for the visually disabled people and using them to ‘contest that person’s identity’. According to Finkelstein the term ‘disabled’ or ‘abnormal’ denoted ownership of particular impairment and signified health problem of the able bodied whereby the disabled were regarded as able-bodied victims of the inequities imprisoned in imperfect bodies. This ignorance about the nature of disability characterized the whole residential institutional approach. According to Finkelstein (1980) there have been three phases of development regarding the perception of people with disabilities. In phase one, the disabled people formed a part of a mainstream oppressed underclass. In phase two, the coming of industrialization, urbanization, regulation and externalization of working practices with the rise of capitalism prevented many people with disabilities from keeping pace with the new market economy. This resulted in them being redefined as passive and dependent and segregated from mainstream society to workhouses and asylums. In the third phase, introduction of new technology led to the belief that individual people would help people with impairments to reintegrate into the mainstream society and cause disability to disappear. In most occasions, the pessimistic undertones attributed to disability tend to engender an expectation within the disabled people by the ‘able-bodied persons’, resulting in the tendency to pass (Titchkosky, 2003). Goffman (1963) referred to passing as a strategy of managing the stigma of ‘spoiled identities’ discredited by law, opinion or social conventions. Hence this came to be regarded as a logical response to a situation where others’ knowing about one’s difference subjected him/her to being excluded. Zola (1982, 1989) referred to this denial as the ‘structured silence of personal bodily experiences’. Hence in fear of non-acceptance many disabled people refuse to acknowledge their disabilities. Based on their study, Olney 6

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and Kim (2001) also reported that being aware of the negative meaning of disability within the larger culture; discriminatory treatment and fear of stigma participants with disabilities tend to hide their disability status from others at least in some interpersonal relationships and social settings as was evident from: Instead of teaching a point of adjustment, participants framed their experience differently from minute to minute, expressing self-assurance and shame, conflict and coherence, sometimes in the same breath. For this reason we have come to understand the process by which people learn to integrate cognitive disability into identity as a flexible continuum of responses that folds back on itself in various directions in response to a myriad of internal and external factors. (p. 578) Issues focusing on the detrimental effect of passing for ‘normal’ despite visibility have been vehemently addressed and challenged by numerous scholars (Lawson, 1998). Such responses result in the invisibility of disability or as Mitchell (2001) has argued as hyper-visible.

The Language of Disability Writers over many years, in a number of different genres, have used physical and learning disability, and mental illness, to signify evil, badness, a state of something wrong. The very basis of difference being measured against normality endorses that the general culture invalidates particular representations of disability wherein disabled people are missing from mainstream culture. In most cases, cultural representations of disability have nothing to convey about the lives of disabled people but everything about the attitudes of non-disabled people towards disability. Disability is used as a metaphor, as a code, as a pretext to communicate prejudice, ignorance and fear that generally exist towards disabled people. Use of phrases and offensive terminologies such as ‘the impaired’, ‘the disabled’, ‘the handicapped’, ‘the blind’, ‘the deaf’, ‘the deaf and dumb’, ‘the crippled’, ‘epileptic’ or an ‘arthritic’ tend to dehumanize and objectify disabled people. People tend to use terms synonymously that tend to have massive negative connotations and repercussions on the perception of people with disabilities. Terms such as ‘invalid’ is a clear -in-valid, while illness, handicapped, impairment and disability are interchangeably used but in no way imply the same thing. Further emotive terms or phrases like ‘afflicted’, ‘stricken’, ‘sufferer’ and ‘victim’, ‘confined to a wheelchair’, ‘wheelchairbound’ in sentences relating to a particular condition or impairment are subjective and transmit a set of values on the individual or group being described. Finally, it should be noted that this list is not exhaustive and occasionally meanings are subject to change. 7

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In the Indian context, stereotypical labels such as Surdas (blind), Langri (Cripple) and Mandbuddhi (mentally retarded) denoted cultural imperialism wherein the dominant meanings of the society communicate dependency and passivity thus resulting in the invisibility of the marginalized. Young (1990) referred to this as the paradoxical oppression in which cultural norms mark the marginalized group as the ‘Other’, thus making them invisible as well as marked out as different by stereotypes (58). Highlighting on the exclusionary matrix to which disabled people are subjected Wendell stated: In most postmodern cultural therorising about the body, there is no recognition of—as far I can see, no room for recognising—the hard physical realities that are faced by people with disabilities…. the problem with post-modern perspectives on impairment and disability is that embodiment is more than conceptual. (1996: 45) Language and how it is used is undeniably critical when addressing disability. This can be illustrated through examples of which one can refer to Kenneth Hall, who wrote the book Asperger’s Syndrome, the Universe and Everything (2001), in which he specified: One thing I hate is when people use the word ‘suffer’ and say I ‘suffer’ from autism. It is not something I suffer from, it’s just the way I am. I don’t tell them they suffer from being normal, do I? (p. 104–105) Commenting on the inappropriate usage of language by the nondisabled is what Leonard Davis (1999) referred to as medium which projects ‘imagined bitterness and resentment’. Such an attitude permeates across gender. In recent years, both disabled men and women have also been used in a more complex way as a metaphor for dependency and lack of autonomy. Non-conformity of disabled men and women to the stereotypes of physical attractiveness, popular culture’s images of masculinity and feminity, evokes fear, denial of the frailty, vulnerability, mortality and arbitrariness of human experiences. However, as one explores works focused on both gender and disability there exist wide disparities and biases. Mays (2006) argues that on its own, disability theory, drawing on principles from the social model, does not adequately explain the gendered nature of disadvantages experienced by disabled women. The model excluded gender implications in the lives of women with a disability while this male-centric view limits understanding of the way disablism is produced and shaped by other dimensions, such as gender. Herein it is essential to point out that the social constructionist model of disability has also paved the way for certain complexities resulting in the universalization of disability, which proclaims that environment alone creates a unified disability experience for persons with disabilities and results in 8

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complete denial of the existence of physiological or ‘bodily’ difficulties. This tends to disengage the experiences of all persons who are disabled. The domain which appears highly challenging concerns understanding and communicating distinctions between disability and impairments wherein definitions of impairment have led to contentious debates among disability studies scholars. Efforts yet remain to be made to disassociate disability from impairment, which inherently requires perceived problems to be addressed within individual bodies. Crow (1996) in ‘Including All of Our Lives: Renewing the Social Model of Disability’ in Encounters with Strangers: Feminism and Disability strongly argued against the social model of disability, highlighting that such a notion not only neglects, but silences people who feel that not all of their barriers were strictly exterior to their bodies. If our movement excludes many disabled people or refuses to discuss certain issues then our understanding is partial: our collective ability to conceive of, and achieve, a world which does not disable is diminished. What we risk is a world which includes an ‘elite’ of people with impairments, but which for many more of us contains no real promise of civil rights, equality or belonging. How can we expect anyone to take seriously a ‘radical’ movement which replicates some of the worst exclusionary aspects of the society it purports to change? (p. 210) There are ongoing debates among international scholars about how to address disability and its allied issues. In reference to this Gabel and Danforth (2002) in Disability, Culture and Education mentioned: Within disability studies, disability has been conceptualized in numerous ways: as an identity, as a symbol of oppression, as a marginal social status, as membership in a minority group, as an embodied experience, as something distinct from impairment, as something inextricable from impairment. … Generally disability study scholars agree to some distinction between disability (as a social experience imposed upon one) and impairment (as innate limitations of the body or mind). (p. 3) Referring to the use of disability language in congruence with the social model approach to disability studies, Gabel (2001: 32) specifically emphasized that: ‘I use disability-first language in my scholarship and with other disability studies scholars, since I believe that disability can be a source of pride and affirmation, as the terms “black” and “gay” can be’. Disabilityfirst language is also symbolic of the oppression and discrimination that disabled people face. In professional and interpersonal conversations where disability-first language can be misunderstood or offensive, the preference would be for person-first language. Disabled academics and scholars like 9

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Oliver (1992, 1996, 1997) and Morris (1992, 1995, 1997, 2001) employ disability-first language in their scholarly writings. For instance, in the United Kingdom the term ‘disabled people’ is used to signify the importance of group and community identity and oppression experienced in the social environment. The argument based on the usage of disability-first language can be further explained through Morris’s (1997) statement that: Disabled people— men and women—have little opportunity to portray our own experiences within the general culture, or within radical political movements. Our experience is isolated, individualized; the definitions which society places on us centre on judgements of individual capacities and personalities. This lack of a voice, of the representation of our subjective reality, means that it is difficult for non-disabled feminists to incorporate our reality into their research and their theories, unless it is in terms of the way the non-disabled world sees us. She maintained that deliberate attempts to counter and challenge the medical and the ‘personal tragedy’ models of disability resulted in the tendency to deny the personal experience of disability. She argued that to experience disability is to experience the frailty of the human body and that if we deny this we will find that our personal experience of disability will remain an isolated one; we will experience our differences as something peculiar to us as individuals—and we will commonly feel a sense of personal blame and responsibility. (Morris, 1995: 216) There is no denial that although the social model of impairment and disability has undergone many changes and redefinitions, it yet continues to be an area seriously being debated on. Clarifying differences between impairment and disability in The Politics of Disablement, Oliver (1990) outlines wherein people with disabilities (such as the Union of the Physically Impaired) began to analyze, define and/or reclaim their experiences and identities: impairment, lacking part of or all of a limb, or having a defective limb, organism or mechanism of the body; disability, the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities (11). Oliver furthers the argument and clarification specifying, The definition of disability is based on the Disabled Peoples’ International definition, which interprets it as ‘the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers’. (Oliver, 1996: 56).

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Oliver (2004: 6–9) specified that the social model has not adequately incorporated or integrated other social dimensions like ‘race, gender and sexuality’, but at the same time maintains that this does not imply that it cannot cope with this incorporation. Disability Studies scholars identify the ways in which disability is socially and culturally designated, and provide a space for persons with disabilities to reassess what they have been told about themselves: their medical, psychological, rehabilitation, and/or general cultural experiences, and their rights. This recognition and awareness propelled thousands to reclaim their disability identity with pride. This ‘social constructionist model of disability’ by disability studies scholars refines the observer’s palette to better understand how ability ideologies are constructed around us, rather than depicted as inherent to the body or mind of a person with disabilities. The gender, race and ability systems intertwine further in representing subjugated people as a pure body, unredeemed by mind or spirit. This sentence of embodiment is conceived as either a lack or an excess. Thomson (2002) shows how disability, like gender and race, is ‘a category of analysis and a system of representation’ that has the potential of transforming feminist theory. In terms of representation Thompson further argued that it is important to understand how disability functions along with other systems of representation in order to appreciate how all the systems intersect and mutually constitute one another. In Critical Disability Theory, Richard Devlin and Dianne Pothier (2006) stated that disability theory emphasizes the inevitability of difference, demands the material reorganization of our basic social institutions, and challenges the assumptions of sameness and assimilation in a profound way. Vasey (1989), who has done much to promote a disability culture, argues that we need to create ‘our own body of artistic work about or informed by the experience of being disabled in the same way as there is already much work created from the point of view of women, people from ethnic minority cultures and from lesbians and gay men’ And she writes, ‘Ultimately disability culture should be recognized as one of the many strands running through contemporary multi-cultural society’. Claire Tregaskis in Constructions of Disability (2004) mentioned that disability discrimination can be adequately addressed only when it is seen as equitable with other forms of social oppression, such as racism. The main perspective of most disability scholars is that attitudinal and structural barriers must be addressed simultaneously in order to make sustained and timely progress, rather than assuming that either structural change or attitudinal change alone will end discrimination against disabled people.

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A relatively recent channel of work is the theological history of disability and disablement. Studies, in disability and theology consistently offer contextualized debates, which animate the examination of relationships between present-day universalized social notions of disablement and theological discussions about very specific concepts like charity that emerged at a particular time in relation to the church. This book aims to traverse the Intersection between Disability, Culture/ Religion, Media, Gender and Literature and address some of the pertinent issues centring them. Each chapter in the book will discuss each of these issues in depth.

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2 DISABILITY AND REPRESENTATION

Representation It is very challenging and at the same time alluring for any researcher to undertake critical analyses of the various approaches to disability. It often exposes one to the vast area of knowledge that highlights marked changes in paradigms confined to defining not only disability but also the differing expressions and manifestations that they have to offer. While the individual approach or the ‘personal tragedy theory’ was predominantly medical or biological in their interpretations, primarily focusing on either the physical or the psychological concomitants of impairment, the social approach theories were found to be more concerned with structural and material conditions. Scholars in disability studies have pointed out that while medicine has helped disabled people, the ‘medical model’ has imbued disability with a negative meaning by stigmatizing disabled people and argued that it was the result of cultural and environmental factors. Hence the shift was quite obvious from the collective needs of people with disabilities being marginalized, to the realization of the need for enhanced civil rights and removal of disabling barriers. The emergence of the social approach ushered in a marked change in the field of disability research, which discarded the pathological underpinnings and on the contrary conceptualized disability as an interaction between an individual and society. It shifted the focus onto the society’s capacity or incapacity to arrange circumstances in order to compensate for individual impairments as the chief rationale for justifying whether a person was being labelled as disabled or not. Prime arguments of the social approach are found to reflect in the earlier works of UPIAS (Union of the Physically Impaired Against Segregation, 1976), which defines disability as ‘the disadvantage or restriction of activities caused by contemporary social organizations and thus takes little or no account of people with physical impairment and thus excludes them from participating in the mainstream of social activities’. In concretizing the social approach, Mike Oliver specified that to reflect the growing distress 13

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and demands of people with disabilities and their allies was ‘nothing more fundamental than a switch away from focusing on the physical limitations of particular individuals to the way the physical and social environments impose on certain groups or categories of people’ (Oliver, 1983: 23). It is rather very interesting to note that in his arguments Oliver does not deny the problem of disability but rather locates it within the society. Failure on the part of society to take into account the needs of people with disabilities and to provide appropriate services to them, rather than the individual limitations, promotes the problem. Oliver (1986) opined that the ‘impaired’ or ‘disabled’ role makes individuals ‘accept dependency’, and makes most of their abilities to achieve ‘normality’. The oppression that people with disabilities face in the society results from institutional discrimination ‘ranging from individual prejudice to institutional discrimination, from inaccessible public buildings to unusable transport system, from segregated education to excluding work arrangements and so on’ (Oliver, 1986: 33). According to him lack of mobility is impairment, but lack of access to essential facilities was a disability. The social-constructivists view disability as a problem located within the minds of able-bodied people, whether individually (prejudice) or collectively, through the manifestation of hostile social attitudes and enactment of social policies based upon a tragic view of disability. This approach holds that individuals become a part of the existing world only when they learn and acquire socially anchored values and beliefs. The various meanings that people learn to attach to various activities have an impact on their ability to interact with the environment. Similarly, disability for them is defined by the meaning that we attach to different kinds of physical and mental deviations. Under the Social Constructivist approach, Söder (1989) outlined two other ways of viewing the relation between disability and environment—the Epidemiological approach and the Adaptability approach. While the Epidemiological approach views disability as a disturbance within an individual, with the environment being treated as the potential cause of disturbances, the Adaptability approach regards disability as an outcome of an interaction between an individual and the environment rather than as an intrinsic personal characteristic or abnormality within an individual. The social creationists (Abberley, 1987; Oliver, 1990) perceived disability as something that exists not within the minds of individuals or groups or even in society as a whole but in the institutionalized practices of the society. Hence impairment is not an unavoidable ‘fact of nature’ but primarily the consequence of social and political factors such as malnutrition, drug abuse, lack of medical treatment (Abberley, 1987). Abberley (1987) opined that besides emphasizing the deplorable state of people with disabilities, there is the need to develop a more comprehensive theoretical approach which would facilitate masses to understand that perception of people with 14

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disabilities as ‘disabled’ are dialectically related to an ideology or a group of ideologies that further perpetuates the existing situation. The functional perspective which explains the existence of a phenomenon or execution of an action in terms of its consequences thus contributing towards maintaining a stable whole laid emphasis on order, stability, consensus and maintenance of the status quo, was evident in the sociological works of Emile Durkheim. Farber (1968) referred to the disabled and deviants as ‘the surplus population’ i.e., a residual population from which recruitment could be made for various positions in the social organization. By addressing the disabled as a residual population, he regarded people with disabilities as deviants who are unable to adjust and meet the demands of the social setting in which they live and are hence subjected to classification, regulation and treatment. He held that placing them outside the larger society facilitated the maintenance of order and stability in the society (cited in Tomlinson, 1982: 14). Such an objective necessitates the need to help children with special needs to adjust to the society by differentiating their needs and allocating them to segregated/separate settings. This was an essential prerequisite for the maintenance of social order without the disabled people disturbing the regular educational system. Focusing on the power and domination of one group over another, the Conflict perspective views people with disabilities as a vulnerable group, oppressed and controlled by the larger population i.e., the so-called ‘normal’ people, who exclude them from the mainstream activities. It asserts that people with disabilities assert control over their lives by acting as a group to bring in changes in their disabling environment through laws and policies and altering the attitude of the people towards them through active participation in public life. It is imperative to note here that this marked a shift in paradigm emphasis to the political approach and helped to visualize the problems of people with disabilities resulting from a disabling environment rather than personal limitations as against the preceding medical model which focused on functional impairment and the economic model which emphasized on vocational limitations. The systems model, which regards disability as a phenomenon that cannot be analyzed other than in relation to the distinctive system/environment as individuals do not belong to a system but are a part of the environment, found active expressions in the works of Bronfenbrenner (1979, 1989), Hayes (1994) and Hornby (1994). It refers to communication in functionally differentiated systems of the difference between impairment and no impairment. Each system indicates specific codification, whereby individuals are observed in different ways in different systems. The system ascribes a specific coordination to each individual, thereby attaching a meaning to the particular individual’s condition. All the other aspects of the person are ignored except those that fit the system-specific form of communication. 15

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The social model often exposes one to the vast arena of knowledge that highlights marked changes in paradigms not only confined to defining disability but also the differing expressions and manifestations that they have to offer. It is undeniable that despite differing perceptions and understanding of disability by various theorists, the social model continues to act as a philosophical base and catalyst for increasing the politicization or mobilization of the movement of people with disabilities. This chapter intends to explore the various modes of representation of people with disabilities beyond the narrow reductionist approach which delimits perception of disability and distils the complexeties associated with it into measurable and tangible components. It provides a brief overview of the role of each of these systems/mediums and a later section that focuses on the Intersection between Disability, Culture, Media and Literature. Disability is primarily a social and political phenomenon and has been aptly expressed by Linton (1998) as ‘disability activism and later disability studies emphasized how disabled people are connected, not by personal symptoms, but by “social and political circumstances that have forged us as a group”’ (2, 4). Unfortunately there exists an association between disability and the notion of being socially unacceptable, wherein a number of cultural stereotypes further perpetuate this linkage. However, it has to be admitted that these representations are not mutually exclusive; news images and also literature transmit numerous forms of cultural representations of disability.

Cinema: Beyond the Lens Given that several social groups can be classified based on behavioural patterns and their social image has paved the way for the sociological construct of stereotypes. This has become the principal mechanism for analyzing the filmic representation of various groups. This kind of stereotypical analysis is essentially geared towards the identification of specific archetypal representation of people of a particular/specific group. They focus on the need to analyze the typification of a specific representation of a group whose characteristics are determined by a set of welldefined individual social norms and behaviour patterns. One of the most fatal resultants of such an analysis promotes uni-dimensional understanding as well as microscopic character portrayal of certain groups. As is with any other marginalized group, the stereotypical analysis becomes an inclusive process of labelling and characterization. As a result, it tends to engulf within its fold labels which are based on recognizable surface characteristics and generalizes this to the much larger community. Such an approach fails to consider the contradictions that might exist within the group. It is significant to be careful of these aspects in today’s world wherein there has been a complete departure of filmmaking from the traditional approach of the focus being on the content of the film. Under such an approach, 16

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chronological progression of the narrative was regarded to be more significant rather than how the narrative has been ‘put’ together. Under such circumstances, it becomes essential to undertake a structural analysis of the films which enables a person to delve into the issue and go much beyond the stereotypical viewpoint. It also enables one to look at films as more complex texts engulfing within itself layers of meanings and interpretations reflecting diverse aspects of a particular group. Cinema at present is regarded as a text that uses specific signifying strategies to produce and contest meaning. It is also true that often a filmmaker might make a movie with a particular mindset and an ideal viewer in mind, thus leaving little or no scope for unambiguity and debate. In such cases there can be no possibilities of multiple interpretations. Hence such making is susceptive to the struggle between the director’s preferred meaning and the audiences’ perception. In most cases, the nature of the struggle is much dependent on the political, social and ideological dispositions of the audience and the structure of the society. Metz (1968, 1974) pointed out that cinema needs to be understood from a semiotic or structural point of view. There is the urgent need to use specific codes to produce the various sequences that encompass and transmit within itself various meanings. Eco (1977) and Hall (1980) have both argued that specific signs combined with the use of cinematic codes are influenced by a large number of interrelated factors and these codes can be narrative, culture and ideology. Turner (1988) opined that culture and ideology implicate the production of texts; hence films can be analyzed on these terms. Hence both the structuralist and post-structuralist approach emphasizes that there is the need to recognize new ways to look at a film and this in turn can play a significant role in demystifying the film text as well as the manner in which it represents certain social groups. In the case of a country like India exposure to a huge spectrum of artefacts can often result in categorizing them into certain specific and recognizable groups. The issue of genre analysis attempts to provide a framework and place particular cultural formations in their appropriate niches. However, one needs to be careful of two issues concerning this, the aspect of ‘correctness’ and nomenclature of the niches since both can influence the way in which genres are included or excluded. The aspect of the genre is also significant since it provides an overlap between the producer and the audience, thus making available a common set of terms that are easily and appropriately recognized as cues about the text being read or what needs to be watched. The audience then in turn becomes more conscious of what to expect in the film and also construct their frame of mind needed to make sense of it. The very notion of the dominant ideology causes the narrative or film to move away from the status quo. The existence of hegemony precludes the 17

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possibility of finding the space where the alternative can become a part of the dominant. As a result of this, the dominant becomes aware of the existence of the alternative and if the marginal becomes a problem then they are coopted into the mainstream. However, this subverts the very power that the marginal would have otherwise wielded. Pleynet and Thibaudeau (1970) had specified that cinema’s revolutionary potential is determined by the degree to which deconstruction of the empiricist ideology produced by the camera can take place. However, the possibility of deconstruction depends on the adequate theorization of conventional cinematic practice whose mental appropriation of reality is equitable with the idealist and empiricist epistemology it inherited from the Hegelian metaphysics and its disappearance of the referent in parting. It is important to keep in view the kind of knowledge (or non-knowledge) that the cinematic apparatus permits as well as the kind of ‘knowledge effects’ it deconstructs. Althrusser in his writings on epistemology opposes knowledge-as-production (‘theoretical practice’) and an empiricist concept of knowledge-as-vision, as competing forms for the mental appropriation of reality. Althrusser has specified that empiricism in its widest sense includes all epistemologies that oppose a given subject to a given object. Hence the knowledge of the object is a part of the object itself. Since knowledge is immanent in the object, it is accessible to direct observation. Thus the abstraction of knowledge from the object only requires the operation of an informed gaze on the part of the subject. However, Althrusser points out that this position confuses thought about the real with the ‘real itself’. It is possible to identify two different forms here. The first form holds that the theory is the byproduct of the pre-existing ‘natural’ laws rather than the constituting knowledge. This implies knowledge having an empirical existence outside wherein cognition is dissolved into the attenuation of a gaze. The second form harps on the fact that since the condition of knowledge is described as a feature of the object, all meaning must derive ontogenetically wherein ‘reality’ is elevated metaphysically as always richer and more living than the theory that attempts to comprehend it. Hence the theory is only an abstraction or approximation of the concrete always latching somehow both with respect to reality and perception. The extent to which cinema serves to define the values, opinions and beliefs of a given collectivity, films can often be expressive of an ideology or several ideologies in conflict. The purpose of postmodernism here is judged by its ability of how broadly it can address the ideology. At present wherein ideology is no longer regarded as just a message or content of films, it becomes important to question if the audience was being well addressed through the film. It becomes important to review and see if any biases in perception and identification may result due to the construction of cinematic images through devices, framing, editing, sound, etc. This is even more significant because ideological constructions 18

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of subjectivity were and still to remains a central concern in the study of film and ideology. A prime problem associated with filmmaking is often the lack of clarity of purpose. The central focus, in most cases, is on making films rather than on what can be achieved through the medium. It is a common belief that there are two basic impulses that can prompt into filmmaking. One is the psyche of the filmmaker wherein he/she supports the social setup or subverts it or attempts to. It is not only important to identify a problem within a system but also attempts to bring about a change in it. Baudry (1974–75) describes the specification of cinematic inscription as the ‘specialization’ of the subject in three moments, the delimitation of the frame, the negation of difference between the series of frames in projection (which provides the illusion and the continuity of movement) and the phenomenon of double identification (with characters in the film and the camera’s own ‘visioning’ of the world) in which the specialization of the subject-spectator is assured. There is no denial of the fact that the establishment does regulate the making of films produced within its ambit. Hence even if a good filmmaker attempts to address an issue of serious social concern it fails to wade through and survive the tide of the power of the establishment which might often lay the foundation of the ambiguity of purpose. Even if the filmmaker succeeds in projecting his personal vision via a film, yet the future of the film is finally restive on the spectators. It is they who finally determine if the film proves to be insightful for them or simply a delightful experience. Therein aptly fits in what Bertolt Brecht had mentioned that it is not by changing cinema that you will change people; cinema will change people when people change their living condition. It is a fact that entertainment film commodity does fulfil a social function but does one need to necessarily look down on that function. There is a need to acknowledge the fact that films are a contributory factor for bringing about changes. On certain occasions, they are reported of playing a mind polluting role often paving way for disruptive and inappropriate perceptions. Such is also applicable to the manner in which persons with disabilities have been portrayed in films. It is important to keep in view the kind of knowledge (or non-knowledge) that cinematic apparatus permits as well as endorses. In light of this, the fourth chapter focuses on the impact of cinema on persons with disabilities.

Mass media, Print Media and Journalism: Catalysts of Change? The world we inhabit is a world of representation, and constructions of disability have no essential, fixed or true meaning against which coverage and distortion can be measured (Hall, 1997). This well explains that although one cannot deny that mass media is a useful source of information about current and historical norms and values, public opinions and its contents 19

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may reflect certain dominant discourses about disability, may not be allencompassing of the realities of disability identities in the social world. Several scholars have lent support to the viewpoint that it attempts to shape reality to be more in line with that interpretation, by portraying a certain interpretation of reality (Lorimer and Scannell, 1994; Webb, 2008). Others have argued that opposed to the great binary aggregate abled/disabled, reality is far more complex and the social world cannot be neatly divided into binary categories (Jacob, Köbsell and Wollrad, 2010). Hence, Kunz and Fleras (1998) maintained that the media do not just represent the reality that exists out there, nor do they simply reproduce or distribute knowledge: they are active producers of knowledge and construct and constitute the very core of our social existence and dominant discourses on disability. Since for quite a period media i.e., press and broadcasting have rather unfortunately brought in much contrast in their own organizational framework. Entertainment or corporate rather than news has now become the mantra for attaining editorial or corporate power. It is now often being used as a medium of casting political influence. Journalism like any other profession has evolved with an ethics of public service, wherein the journalists were supposed to serve the public as a whole rather than the interests of particular sections. However, to much shame many of the journalists have championed the cause of addressing the narrow commercial interests of advertisers and owners. The very essence of the ideology of public service being associated with the notion of objectivity is very much under assault today. The faith in reporting ‘events’ based on neutral criteria is now being subjected to continuous criticism. Rey Chow (1998) arguing persuasively on the blind spots embedded in the discourse of resistance stated that: If there is a metanarrative that continues to thrive in these times of metanarrative bashing, it is that of ‘resistance’ … . As an imaginary appealing especially to intellectuals, ‘resistance’ would have to come from somewhere. It follows that resistance is often lodged in something called ‘the people’ or one of its variants, such as the masses’, ‘the folk’, or, at times, the ‘subalterns’. What is implicitly set up, then, is a dichotomy between the pernicious power on the top and the innocent, suffering masses at the bottom, whose voices await being heard in what is imagined as a corrective to the abuses of political power’. (p: 113) It is clear that Chow’s account does not serve to deny the existence of actual forces of oppression and resistance in the world, but she highlights the crucial notion of a mediating apparatus, a specifically defined public space that would serve the relationship between those who have and those who do not have power. Just Chow’s reconceptualization of the relationship between 20

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the powerful and the powerless can illuminate issues in cinema that similarly can be applicable in case of people with disabilities often being placed at the end of the social hierarchy.

Literature: The Implicit connotation Eagelton (1983) had aptly stated Literature plays a powerful role in society purporting truths and values, reflective of the time in which it was created. This form of art and entertainment rests outside of doctrines of overt force, more discretely providing society with collective images, symbols, habits and rituals. Literature constitutes a powerful force, constitutive of social reality and a medium for the communication of values and ideas and in the sharing of common culture and unspoken tradition (McCollum, 1998). Based on Foucauldian notions of knowledge and power, literature is regarded as a collection of cultural discourses while cultural studies, closely linked to New Historicism, addresses literature as a location of cultural struggle (Habib, 2008). Williams (1980) recognized the link between literature/art and perceptions of social reality (Laurenson, 1978) and thus invented a new realm of cultural and literary criticism (Higgins, 2001). Williams referred to culture in terms of signifying systems and values which are ‘communicated, reproduced, experienced and explored’ (as cited in Barnes and Mercer, 2010: 290) and argued that culture and the creation of art rest in materialism and exists within the context in which it is produced and consumed. It is created within the confines of a specific era, by authors who are part of a specific class and gender and are subject to social influence (Laurenson, 1978). Eagleton (1983) strongly argued that politics forms an inherent part of literary theory and that conventional methods of analysis are stuck within their own ideological frameworks. Hence, he maintained that literary criticism has rarely challenged the status quo and has instead functioned in sustaining the power structures and reflecting subordinate, hierarchical and individualistic approaches. Therefore literary theory needs to be analyzed as an object of knowledge and inherently be linked to the wider society, to readers and to writers and move beyond this narrow approach. The need to address the pervasive negative, fragmented and charitable presentation of disability in literature within the cultural framework as a social phenomenon, rather than continuing to use text, author or reader-based analyses which fail to move beyond the text itself, was also supported by Bérubé (1997). Protagonists with disabilities can be admirable, inspirational, pitiable or cynical! It is indeed very intriguing for readers to perceive how disability 21

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affects a character’s psyche and actions. Perhaps it is one of the reasons why such a broad array of novels featuring certain categories of disability have proved so popular in both the English curriculum though not so much in the Indian context. It is important to note in this regard that most of these novels provide a pessimistic picture characterized by alienation, crisis and social isolation. They reflect the metaphorical representation of the concept of disability and the disabled. This chapter aims to explore some of the most prominent works in literature both International and Indian to establish the universal perception of disability. Historically, literature has portrayed disability in an extremely negative light. From childhood stereotypes abound in our stories whereby we have mostly been exposed to tales that conflate evil with a disability—wicked witches, brutal giants and deceitful pirates, etc. Characters have ranged from villains with physical disabilities in Grimm fairytales with Lenny as an intellectually impaired menace in Of Mice and Men (Steinbeck, 1937), the caustic personalities of Long John Silver and Captain Hook, pitiful Billy in Jo’s Boys (Alcott, 1886), and into the present-day portrayal of Dudley as fat, stupid, and aggressive in Harry Potter and the Sorcerer’s Stone (Rowling, 1999). Thurer (1980: 12) had specified that ‘the disabled have had a bad literary press’. Elaborating on the common stereotypes of persons with disabilities in literature, Biklen (1981) mentioned the prevalence of six such perceptions such as menacing, extraordinary, incompetent, child-like, victimized, and ‘outsider and interesting scenery’. These stereotypes emulate six conceptions of persons with cognitive impairments on which historic institutional models were based: sick person, subhuman organism, object of pity, burden of charity, and holy innocent (Wolfensberger, 1969).

The Intersection between Disability, Culture, Mass Media and Literature: Bridging or Broadening the Gap narratives are socially organized phenomena which, accordingly, reflect the cultural and structural features of their production … as socially organized phenomena, narratives are implicated in both the production of social meanings and the power relations expressed by and sustaining those meanings. (Ewick and Silbey, 1995: 200)

Very often whatever we tend to watch or listen invariably reflects and sustains innumerable institutional and cultural arrangements but to what extent these will reproduce or conceal realities about the social life have a significant role in stabilizing or destabilizing instituted powers. Disability operates within a culture through medical, political, legal and literary discourses of exclusion, that construct the physically disabled body 22

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as an embodiment of corporeal insufficiency and a repository of social anxieties about control and identity. Meekosha (1998) argued that disability is interlinked with complex social power relations, which implies that an individual’s impairment will always be part of an embodied identity. Eisenland and Sailers (1998) maintained that the analysis of ideology and values of society facilitates culture’s understanding of disability. Commonly the presentation of disability in literature tends to be one-dimensional, dehumanizing and stereotypical. Such cultural representations according to Barnes (1992) form the bedrock on which the attitudes towards, assumptions about and expectations of disabled people are based. They are fundamental to the discrimination and exploitation which disabled people encounter daily and contribute significantly to their systematic exclusion from mainstream community life. (39) Shakespeare (1997) also opined that disability within literature is ubiquitous across cultures and time often presented in rigidly typed cultural roles and is symbolic of larger social issues. He also argued that as a resultant, when used as a literary tool fails to find recognition in the wider realm of literature. Linton (1998) also strongly opposed the mode of representation of disability and contended that ‘disability imagery abounds in the materials considered and produced … and yet because it is not analyzed, it remains as background, seemingly of little consequence’ (110). Goffman (1963) in Stigma while analyzing social interactions around people, including those with ‘abominations of the body’, who differed from the expected norm elaborated on the social construction of disability while discussing strategies used by stigmatized people to win acceptance wherein he demonstrated how stigmatized people can internalize rather than oppose dominant standards by which they are deemed. Foucault writing about bodies that differed from the norm in The History of Sexuality (1976) described how, bodies seen as problems were sequestered, controlled, diagnosed, and otherwise socially managed while providing his in-depth insights about madness, docile bodies, and the clinical gaze. Highlighting the social model, Simi Linton  (1998) in  Claiming Disability, mentioned that it provided a basis for disabled people to find a group identity, despite many differences among them and rights. She further elaborated that by ‘refusing the medicalization of disability’, disability activism and later disability studies emphasized how disabled people are connected, not by personal symptoms, but by ‘social and political circumstances that have forged us as a group’ (Linton, 1998: 2, 4). The period during the 1990s witnessed disability scholars and literary scholars engaged in literary and cultural analysis and brought several issues 23

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including social attitudes towards disability, ethics and human rights (Hall, 2016: 53) into greater visibility much of which will be discussed later in the chapters focusing on disability in relation to culture/religion and literature. In furthering this perspective, Davis (1995) in Enforcing Normalcy specified the notion of normalcy was upheld in the very structure of the nineteenth‐ century novels in which disabled characters were assigned marginal roles such as Tiny Tim in Dickens’s  A Christmas Carol  (1843) thus reinforcing a dualistic distinction between normal and abnormal. This perspective also found support in the arguments of Rosemarie Garland‐Thomson who coined the term ‘normate’ describing an idealized position that has dominance and authority in society (Garland‐Thomson, 1997: 8, discussed in detail in Chapter Nine). Based on Bogdan’s (1988) analysis of freak shows, she further demonstrated how they lent support to normate‐based thinking. Seibers (2008) later highlighted the existence of a powerful though largely invisible ‘ideology of ability’ which he argued permeates society as a ‘baseline by which humanness is determined. The lesser the ability, the lesser the human being’ (10) Later Mitchell and Snyder (2000) argued in  Narrative Prosthesis  that according to them, such literature disability calls for an explanation, inaugurating the narrative act: ‘the unknowability’ of disability ‘consolidates the need to tell a story about it’ (Mitchell and Snyder, 2000: 6). They maintained that canonical authors frequently rely on disability as a narrative device to provide their vitality to the fiction and reaffirm normalcy in their works since they offer an account of the causes and consequences of the disability thus bringing disability from the margin into the centre of the story and finally leading to cure, rehabilitation or elimination of the deviance in some manner thus restoring a sense of order. The emergence of identity‐based and rights‐influenced approaches has provided disability studies scholars’ models and parallels which yielded significant new insights. However achieving a cohesive disability identity is difficult as rightly stated by Davidson (2016) that the borders of disability can be ambiguous, especially when it comes to conditions that are temporary, invisible or treatable with medication (434). This was further supported by Zola who pointed out that disability is a nearly universal experience because unless we die suddenly we will be disabled at some point in our lives. Couser (2005) was more specific in stating that disability as a minority group is arguably more diverse than those of race, gender, class and sexual orientation because of its very constitution wherein disability may affect one’s sense or one’s mobility, may be static or progressive, ….. or functional, visible or invisible. He elaborated that all these differences create potential fault lines within the whole; far from monolithic, then, the category of disabled people is inflicted with differences that profoundly affect identity politics. It is important to note that intersectional approaches have helped disability studies acquire the consequential nature along with activist orientation. 24

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The literary intervention in the field of disability has assigned new perspectives to visualize it ranging from curtailing formation and hegemony of normalcy to the positive metaphorical use of disability in and through texts, media, etc. Disability oppression is created through complex dynamics of media representations. The knowledge produced through the production of media content gives meaning to existing stereotypes, can easily be disseminated to areas far off the source and the effects can produce far-reaching consequences on the lives of both disabled and non-disabled people. Moreover, portrayal of disability using ‘traditional’ and ‘progressive’ models with the ‘supercrip’ imagery by the popular may cast a dominant representation. Hence although entrusted with the social and moral responsibility of creating healthy public awareness, very often media through their anti-social representations and unsubstantiated attempts tend to create ‘realistic’ imageries and continue to create and reinforce disability stigma and misinform readers. This was well evident in the words of Worrell (2018): ‘the representation of disability in the media is inadequate, inaccurate, mostly negative, and may have significant impact on society’s treatment of individuals with disabilities’ (97). This has enabled disability scholars and activists pose a number of salient questions about the negative disability representations or discourse and the influence it casts on readers’ attention and understanding to the reality of these negative representations and hence in turn reinforce stereotypes and disability stigma (Davis, 1995; Mitchell and Synder, 2000). However, with the passage of time and space scholars have also inducted a perspective change in this dimension disability metaphor. Although representations that simply invoke pity or horror necessitate objection, Bérubé (2005) specified that at the same time rejecting disability tropes because they are not realistic seems ‘incompatible with the enterprise of professional literary study’. On the contrary, he argued this demands for adopting an approach that will ensure creating awareness of how familiar narrative devices and metaphors are grounded in the ‘under recognized and undertheorized facts of bodily differences’ (570). Other scholars have also lent support to this evolving perspective. Scholars like Vidali (2010) have stated that rather than simply policing harmful metaphors, artists and scholars should find ways to work ‘critically, ethically, transgressively, and creatively at the edges of disability metaphor’ (51). Hence in view of all these, the same time disability representation theory calls for content developers and producers to be progressive and realistic in their representations of different forms of disability. Failure on the part of traditional academic disciplines to subject to analytically reflect upon such issues have prompted disability scholars to study the role of literature as a social phenomenon, a source of imagery, stereotypes and symbols (Biklen and Bogden, 1977; Gartner, 1987; Longmore, 1987; Norden, 1994) as untold histories, narratives and attitudes and reactions towards disability (Mitchell and Snyder, 2001), a source permeating 25

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standards of normality, conformity and productivity (Davis, 1995; Keith, 2001; Barnes and Mercer, 2010), a controversial ground social and cultural identity (Hefferty and Foster, 1994, Mitchell , 2002, Thomson, 1997a,b) and also a gendered discrimination (Kent, 1987; Fine and Ash, 1988; Morris, 1991). Moreover, intersectional approaches and multidisciplinary perspectives provided bases for disability critics to extend normalcy more explicitly to able-bodiedness and ability. McRuer (2002) specified a ‘compulsory ablebodiedness’ wherein he explained how ableism and heteronormativity support each other, thus compelling people to respond through socially accepted behaviour patterns. Hence ‘Compulsory able-bodiedness’ for him signified ‘being capable of the normal physical exertions required in a particular system of labor’ (p.91). Emphasis is being laid on the argument that the concept of normalcy is evolving and needs to be subjected to literary investigation in order to foster as Schweik (2009) mentioned ‘understanding of the social enforcement of normalcy’ (vii). Literary critics have assigned greater attention to disability representations and highlighted that there may be variations in the cultural meanings of normalcy and disability although works have traversed across areas such as gender, race, ethnicity, literature, media, sexuality, etc., in relation to disability. Attempts have been made by scholars in disability literary studies to address issues from the view of social construction and explore how some of these areas overlap or intersect only in regard to disability groups but also other identity groups. One can needlessly mention some of the works such as Garland-Thompson’s work on disability and feminism, Alison Kafer’s Feminist, Queer Crip (2013), Stuart Murray’s Representing Autism, etc. Besides, narrative fiction and autobiography addressal to disability issues have also found an avenue of communication through children literature, graphic novels, narrative graphics, comic books, films, media, poetry, drama, etc., like Epileptic and the Ride Together, El Deafo, Manga to name a few. The world we inhabit is a world of representation, and constructions of disability have no essential, fixed or true meaning against which coverage and distortion can be measured (Hall, 1997). This well explains that although one cannot deny that mass media is a useful source of information about current and historical norms and values, public opinions and its contents may reflect certain dominant discourses about disability, may not be all-encompassing of the realities of disability identities in the social world. Several scholars have lent support to the viewpoint that it attempts to shape reality to be more in line with that interpretation, by portraying a certain interpretation of reality (Lorimer and Scannell, 1994; Webb, 2008). Others have argued that opposed to the great binary aggregate abled/disabled, reality is far more complex and the social world cannot be neatly divided into binary categories (Jacob et al., 2010; Raab, 2007). Hence, Kunz and Fleras 26

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(1998) maintained that the media do not just represent the reality that exists out there, nor do they simply reproduce or distribute knowledge: they are active producers of knowledge and construct and constitute the very core of our social existence and dominant discourses on disability. Scholars have contended that much of the narrow and reductionist discourse and representation by media draws it sustenance from the medical and charity model of disability which primarily endorses medical assistance and rehabilitative initiatives. Harrison (1985) specifies that the selective approach of coverage towards disability issues results in the state of heroism for disabled persons by the factor of hype and/or leads to an exaggeration of facts, figures and conditions. Often the outputs of such approaches tend to cast an irrefutable impact on the language in the media thus signifying the disability as abnormal, illness and tragic (Gold and Auslander, 1999). Analyzing on the deteriorating role of media one can mention, Haller and Burns (2015) who clearly stated that Since the role of media is vital to address the issues of the disadvantaged sections and the disabled are facing several problems, such discussions carry a lot of weight. But, the discussions remain naïve, sub-standard and partial and enjoy pragmatic flaws. The issues of the disabled are yet to be understood and addressed. Several scholars have debated and stated that mass media not only played a major role in reflecting generally held public attitudes and perceptions on disability, but also in shaping them (Auslander and Gold, 1999; Mutz and Soss, 1997). Emphasizing on this many scholars have opined that there are a number of factors other than press coverage that can influence public opinion on a subject such as disability, ranging from historical and political views to personal experience. A thorough analysis of media studies reveals that besides a complex relationship between coverage and the public, there are also correlations between increased coverage and growing public priorities (McCombs and Shaw, 1972; McLeod et al., 1974). In this regard, it will not be incorrect at all to mention that the media acts not only as a mode for transmission and dissemination of information but also as a catalyst for the creation or the reinforcement of ideas about disability. Auslander and Gold (1999) had aptly stated that the media have an influential role in ‘news gatekeeping’ and at the same time ensure that ‘the amount of media coverage an issue receives is related to the importance placed on that issue by individuals in society, regardless of any measure of the issue’s objective importance’ (p. 421). The print media entrusted with the social and ethical responsibility of being the watchdog for the representation of social issues has been subjected to frequent review and vehement criticism. Of the several grounds on which disability writers, scholars and activists have contended the role of the print 27

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media in disability representation has been that news media frame disability through images and words that are often stereotypical (Boyer, 1988; Haller, 1999; Haller, 2000; Ross, 2001; Jones and Horwood, 2001; Schneider, 2003). Arguments have been put forth by numerous writers on framing by which the news media shape how stories are understood by audiences (Goffman, 1974; Haller, 1999; Valenzeula, 1999; Davis and Kent, 2006; Haller et al., 2006; O’Malley, 2007; Haller, 2010). The concept of disability has been explicitly explained by, O’Malley (2008) as referring to the expectations of the world, ‘based on prior experience, against which new experiences are measured and interpreted’ (21). Elaborating on this dimension, Titchkosky (2007) while examining disability through headlines, because headlines ‘frame a topic for the imagined reader’, and they make meaning for someone who is looking for something sensible and interesting mentioned that ‘[Frames] govern our ways of knowing, taking interest in [something] and explaining it’ (120). Bogden and Biklen (1977) condemn the media of relegating significant issues centring disability through selective coverage with reporters often failing to cover their plights and instead focusing on derogatory points thus subjecting it to ridicule. Haller (2010) mentioned that the positive twist of many of these news narratives is ironic given that the news media are often criticized for their somewhat constant negative news about disability topics. He had further argued that people with disabilities are the sources in feature stories, rather than news stories. Moreover, non-reliant on people with disabilities as ‘sources’ of information or those who possess the right to speak for themselves leaves a negative imprint in the mind of the readers. With reference to women and girls with disabilities, Haller (1999) vehemently criticized of them being ignored in news stories, thus crafting more space for gender disparity. Despite being neglected and deprived of their due rights, the cases of women with disabilities remain unreported, thus making them susceptible to further exploitation. In light of this approach, the book aims to address in the subsequent chapters the intersecting relationship between disability and religion, culture, media and literature in light of the impact that each can have on the lives of people with disabilities.

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3 DISABILITY, RELIGION AND CULTURE

Religion, in its multiple manifestations, plays a significant role in determining how disability is understood and in the treatment of persons with disabilities in a given historical-cultural context. Existing literature emphasizes on an intersecting relationship between religion and disability. Miles (2001), argues in one of his essays that disability is possibly conceptualized differently in Indian history, finds varying concepts in ‘religious, legal, medical, folkloric’ material, and suggests tacitly that these categories and themes are universal to all cultures. Hence in view of this understanding, historical scriptural conceptualizations of disability are important. There is the need to re-define the cultural/religious representations that in turn can facilitate contending human difference and respect personal spaces.

Hinduism and Disability Both religion and ecology embrace descriptive and historical studies and prescriptive and constructive theologies wherein some scholars argue that environmentally friendly scriptural passages do not necessarily imply environmentally sensitive practices while others state that there can be both concepts and practices from these traditions that can be integrated into discussions of environmental policy and ethics. In lieu of this argumentative discussion, it can be stated that disability studies need more religion wherein focused attention needs to be directed to the intricacies of religious beliefs, practices, texts and communities. This is more so since there exists a profound impact of it on theological interpretations of disability (Adams, 2014; Linton, 2007). Religion also shapes cultural images of disability, so much so that people sometimes use theological language in the reference of disability. Religious beliefs, spirituality, and faith traditions provide structure that individuals with disabilities and others use to create meaning in their lives. The relationship of disability with punishment in Indian cinema is a complex set of equations where disability can either be seen as punitive or where

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the tolerance of a disability is a form of self-abnegation that emerges as an act of therapeutic righteousness. There are innumerable references to impairment and characters with disabilities in Indian literature. It is imperative to note that all these ideas have strong mythological origination. One can understand the essence of the pervasiveness of dependence as a theme of disability from several disabled characters from Hindu mythology. It is very difficult to cover the vast range of available literature, in view of which attempt will be made to analyze a few of the popular works. This chapter aims to analyze disability as portrayed in the two epics the Mahabharata and the Ramayana, the Vedas and the Upanishads. Reference to disability can be traced in two prominent mythological epics, Ramayana and Mahabharata. These to a great extent form the basis of societal response to disability. The depiction in these works varies from acceptance of persons with disabilities in positions of power to perpetuating the idea of equating disability with evil, feebleness or as a punishment. It is quite a parody that wherein being different and unique is celebrated on one hand, it can be considered as being cursed and marginalized on the other. The Rig Veda refers to the stupendous giant who was both a man and a woman possessing a thousand heads, a thousand eyes and feet. One finds reference of his limbs reaching out and enveloping it on every side, his fingers of thousand hands extended beyond it to a length of ten fingers. It is mentioned that as heaven was contained in him, the Man himself was sacrificed and he was dismembered, resulting in the creation of all world’s creatures. The Purusa is of thousand heads, a thousand eyes, a thousand feet. He exists pervading the whole terrestrial regions and above it by ten fingers (ten qualities or space). Whatever was or whatever will beall that is Purusa …. All these (creation) are His Grandeur, but the Purusa is ever superior to all these (in His ‘transcendental’ aspect) (195). One finds usage of the term ‘blind’ with reference to it emanating from a curse. In Book 1 of Adi Parva: Section III of the Mahabharata Pushya having ascertained himself that the food served to Utanka was unclean and mixed with hair pleaded for forgiveness from the curse: ‘Sir, the food placed before thee is cold, and doth contain hair, having prepared without sufficient care. Therefore I pray thee pardon me. Let me not become blind’. To this Utanka’s response was ‘What I say must come to pass. Having become blind, thou mayst, however, recover the sight before long’. It is important to note that the character of Brahma or Prajapati occupies a subordinate position in the epic pantheon and is described as the Supreme 30

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Creator, a passive-active god, holy, eternal and wise though not omniscient. He is also referred to as the Caturmukha i.e., having four faces implying the four Vedas. India’s vast compendium of ancient knowledge and legend is built around the battles of two families with competing claims to the throne as in one of the greatest epics of the world the Mahabharata. One of the most significant characters with disability has been Dhritarashtra, who became king after his brother Pandu died; but whose legitimacy was disputed because he was blind from birth. One finds frequent referral to Dhritarashtra’s blindness throughout the work. Dhritarashtra, the blind king in the Mahabharata is a complex character and remains deeply dependent through the entire epic, on his wife, his sons, and his advisors. Some of the paraphrases from the Mahabharata explain the reasons for Dhritarashtra’s blindness. In Book 1: Adi Parva Section LXVII there is a reference to Dhritarashtra being blind through his mother’s fault and the wrath of Rishi. The tale goes as to unveil that Rishi Dwaipayana (Vyasa) was called to impregnate the widows of his half-brother Vichitravirya. The first of these princesses afraid of the Rishi’s grim appearance closed her eyes in fear, and hence her son Dhritarashtra was born blind. In Section CIX one finds reference of Pandu becoming the king as Dhritarashtra was regarded ineligible due to his blindness. In Section CXXXVI of Adi Parva I Dhritarashtra regrets that due to his blindness he could not see the skills displayed by his sons on the completion of their education which was described to him, Kunti and Gandhari by Vidura. He also accounts his blindness for his inability to avoid the dispute between his sons and nephews. Dhritarashtra hearing the ill news of the success of the Pandavas and recollecting the resolutions of Duryodhana, Kama, and Sakuni, pondered for a while and addressed to Sanjaya the following speech: Attend, O Sanjaya, to all I am about to say, and it will not become thee to treat me with contempt. Thou art well- versed in the shastras, intelligent and endowed with wisdom. My inclination was never to war, not did I delight in the destruction of my race. I made no distinction between my own children and the children of Pandu. My own sons were prone to willfulness and despised me because I am old. Blind as I am, because of my miserable plight and through paternal affection, I bore it all. I was a foolish alter the thoughtless Duryodhana ever growing in folly. (Adi Parva: Section I) The medical and the charity approach towards disability become much evident particularly in Book 2: Sabha Parva of the Mahabharata. Rishi Narada in his instruction to King Yudhisthira mentioned Seekest thou to cure bodily diseases by medicines and fast, and mental illness with the advice of the aged? I hope that the physicians 31

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engaged in looking after thy healthcare are well conversant with the eight kinds of treatment and all are attached and devoted to thee. (chp: V) It further elaborates ‘Cherished like thou father, the blind, the dumb, the lame, the deformed, the friendless, and ascetics that have no homes?’ The legend of Jarasandha exposes how the concept of disability was viewed as supernatural and marked by rejection and piety. Jarasandha originates from two Sanskrit words jara and sandha. The story centres around Brihadratha, king of Magadha, whose inability to have children was resolved by a sage named Chandakaushika giving him a fruit. The story proceeds to state that Brihadratha cut the fruit in half and gave it to both his wives, who became pregnant and gave birth to two halves of a human body. The bodies of the two lifeless halves were disposed of. However, the two halves miraculously joined when a demoness, Jara, held them in her palm, giving rise to a living child. Hence the child was named Jarasandha, i.e., ‘the one who is joined by Jara’ (Section XVII). The  Mahabharata  states that Shishupala, son of Damaghosh, king of Chediwas was born with three eyes and four arms (Section XLII). His parents were inclined to cast him out, but were warned by a voice not to do so, as his time had not come. It also foretold that his superfluous members should disappear when a certain person took the child into his lap, and that he would eventually die by the hands of that same person. Krishna placed the child on his knees and the extra eye and arms disappeared, indicating Shishupala’s death was destined at the hands of Krishna. Elaborating on Shisupala’s legend the Vishnu Purana specified that in his chain of former births he was the unrighteous but valiant monarch of the  Daityas,  Hirayakashipu, who was killed by the divine guardian of creation. In his next birth he was the ten-headed (sovereign  Ravana), whose unequalled prowess, strength and power were overcome by the lord of the three worlds (Rama). The legend further continued specifying that having been killed by the deity in the form of Raghava (Ram) he had long enjoyed the reward of his virtues in exemption from an embodied state, but had now received birth once more as Shishupala. There are also references to various visitors denied of admission to the court of King Yudhisthira such as tribes with three eyes, some with eyes on the foreheads and many with only one leg (Section L). Reinstating the concept of charity Section LI refers to Yajnaseni’s (Draupadi) daily efforts of attending the needs of everybody, including the deformed ‘dwarfs’, before consuming food herself. The woeful references of helplessness, piety, neglect and rejection are also evident in various paraphrases in other Parvas of the Mahabharata. Dhritarashtra complains of his helplessness and rejection in Section XLIX of Book 3: Vana Parva. He states ‘seeing me void of eyesight and incapable 32

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of exerting myself actively, my wretched son, O charioteer believeth me to be a fool, and listeneth not to my words’. In Section CVIII one finds records of people being subjected to harassment by dull-headed sons of Sagara. One among them Aramangas was reported to seize the feeble children of the townsmen and drowned them in the river. Dhritarashtra’s indecisive nature is further reinstated in Valarama’s quote ‘He doth not now see with his mind’s eye how he hath become so sightless and on account of what act he hath grown blind among the kings of this entire earth’ (Section CXIX). Sage Ashtavakra and Ajamukhi form the most enduring of the many interesting folklores which elaborates on disability being regarded as punitive. The Chāndogya Upanishad makes reference of Ashtavakra, whose name literally means ‘eight deformities’ of having being born disabled which is believed to have emanated from a curse when he was still in his mother’s womb. The scripture further elaborates on Ashtavakra’s efforts to redeem himself by proving to be a stellar scholar which ‘restored’ his body to one of perfection. This reduces to the very notion of any form of deviation being perceived as the wrath of Gods and Goddesses. The attitude of neglect towards the disabled was evident in attributing their failures to their inability and incapacity. People preferred to keep them away from every facet of life. In Section CXLIX of the Vana Parva evidence of such attitude is found. Delivering viewpoints on statecraft Hanuman instructs Bhima that in secret affairs, women, sots, boys, covetous or mean-minded persons and ‘he that betrayeth signs of insanity should not be consulted, Dunces should in all affairs be excluded’. Similarly, Markendeya in his advice to King Yudhisthira on religious practices mentioned that ‘If they are to be employed in Sraddhas happen to be dumb, blind or deaf, care should be taken to employ them along with Brahmanas conversant with the Vedas’. In Sabha Parva (Section L) there are references of various visitors who were denied admission to the court of King Yudhisthira such as tribes with three eyes, some with eyes of the foreheads, many with only one leg. Disability emanating due to past sins was the most common notion prevalent. Section CCVI of the Vana Parva specifies that And when all this taketh place the subjects of the kingdom begin to decay. And it is then O Brahmana that the ill-looking monsters and dwarfs, and hunch-backed and large headed wights, and men that are blind or deaf or those that have paralysed eyes or are destitute of the power of procreation, begin to take their birth. It is from the sinfulness of king that their subjects suffer numerous mischiefs. Even Section XCIX of Book 13: Anusasana Parva specifies that ‘One that steals a light becomes blind. Such a man has to grope through darkness (in 33

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the next world) and becomes a destitute of resplendence’. The Aswamedha Parva: Book 14 specifies that sinful men are born as immobile entities, or animals, or beasts of burden or carnivorous creatures, or snakes, or worms, insects or birds, or creatures of the oviparous order or quadrupeds of diverse species, or lunatics, or deaf or dumb human beings, or men that are afflicted by dreadful maladies and regarded as unclean. (Section XXXVI) Even certain stanzas from Chapter IV and V of the Garuda Purana provide insight into disability originating due to sins. Any person who through pride, insults his teacher, becomes an epileptic; who despises the Vedas and the Shastras certainly becomes jaundiced. Who bears false witness becomes dumb; who breaks the meal-row one becomes one-eyed: who interferes with marriage becomes lipless; who steals a book- is born blind. Who strikes a cow or a Brahmin with his foot is born lame and deformed; who speaks lies becomes stammered, and who, listens to them becomes deaf. Applying the theory of karma, Charaka, a medical scholar in ancient India known for the Charaka Samhita, 12 also maintained that diseases in the present life were the result of undesirable actions in the past life. However, care for disabled people was provided for by the administration: In ancient India, when the State and the joint family, and to a certain extent, the caste, took care of the individuals who needed shelter and protection against the rigours of life, the physically handicapped did not present a problem. In the compact rural community, the headman was entrusted with the task of looking after the welfare of its distressed and disabled members (Bhatt, 1963: 96). Disability being perceived as a condition that yearns for itself piety and sympathy has been pervading the social systems for a very long time. This has been ranging from rendering services to the disabled as a means for redemption from past sins to being sympathetic to earn Punniya. Section LXI of the Anusasana Parva of the Mahabharata specifies that ‘The king should protect the wealth of those that are old, of those that are minors, 34

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of those that are blind, and those that are otherwise disqualified’. Even CI mentions that One should not taunt a person that is defective of a limb or that has a limb in excess, or one that is destitute of learning, or one that is miserable, or one that is ugly or poor or one that is destitute of strength. Though at the outset it expresses concern for the marginalized at the very root it does encompass and endorses the charity model. In this context, Bhagavad Gita in the epic Mahabharata sets the code of conduct for rulers to follow in their treatment of the disabled. It prescribes that people with disabilities such as blind, crippled or otherwise deformed should be treated with sympathy and care. It also establishes the rules for practising charity and lays down the theory of good and bad karma reinstating within its arguments that disability results due to immoral sins of the previous life. It prescribes charity in the form of artha (money), vidya (education) and abhaya (fearless). It thereby harps upon the necessity for the charity-based approach. In this regard, Anusasana Parva (Section LXI) mentions that the king should protect the wealth of those who are old, of those who are minors, of those who are blind and of those who are otherwise disqualified. Generally, Shakuni portrayed as a mastermind behind the Kurukshetra is another example of a character with disability. There has also been a tendency to portray people with disabilities as characters with an evil and hideous nature. Throughout the epic his intentions have been showcased scheming to avenge Gandhara’s defeat by Hastinapur years before his desire to avenge the insult Bhisma made when he insisted on Gandhari’s marriage to a blind man, or the wish to see his own blood (the Kauravas), his sister’s children, elevated over the  Pandavas and eventually his plans culminated into the biggest wars in Indian history. The epic of Ramayana also illustrates several characters with disabilities wherein characters having any disability or any deformity were normally associated with something negative or persons having malevolent intentions. One finds reference to Manthara’s hump and her revenge on Rama and Dasaratha’s accidental killing of Shravana, boy supporting his aged and blind parents. The case of Manthara can be related to the French Novel ‘Hunchback of Notre Dame’ by Victor Hugo where the central character Quasimodo had a hunch and was very much ugly looking. He was even rejected by the gypsy girl he loved; later on, he became crooked and all that he did seems to be manifested in the hunch or in the ugliness of his physical appearance. Anita Ghai (2003) has argued that in the epics Mahabharata and Ramayana, many characters with disabilities are presented in negative light. She specifically points to Dhritarashtra, the blind king in Mahabharata, 35

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being deprived of the throne, and the portrayal of Shakuni (Mahabharata), who has an orthopaedic disability, and Manthara (Ramayana), a dwarf woman, as characters with evil intent. Narasimhan and Mukherjee (1986), Miles (2001) and Dalal (2006) also referred to one or more of these historical moments to qualify social reactions to disabled people in the past reflecting discriminatory as well as inclusive approaches. There are also details of disability evolving as retribution of sins. This is depicted in the blindness of Shravana’s father arising from his revulsion when washing the legs of a sage who suffered from elephantiasis. One also finds reference to Kaikeyi been cursed for mocking an aged, infirm, hearingimpaired Brahmin. The punishment for departures from the social norm, especially for female characters, can often be some form of disfigurement. Disability and disfigurement as sexual punishment are represented as the idea of the opposite—a ‘perfect body’—as the trope of desirability. One finds reference to this aspect of amputation in the character of Surpanakha, the widowed sister of Ravana, the antagonist of the Hindu epic Ramayana. Her condition is specifically attributed to lust and vanity, a theme that repeats itself in films where women who act against social rules are rewarded through some form of disfigurement. Manthara is said to be hunch-backed, ugly and antagonistic in appearance. Manthara, it appears, is an expert talker and a cunning woman who can manipulate her way to get what she wants. The idea of self-abnegation can be strongly identified with that of the character of Gandhari, the queen of Kurukshetra and wife of the blind King Dhritarashtra in the Mahabharata. Gandhari’s decision to blindfold herself throughout her life on finding out her soon-to-be husband of being blind till date invites several reasons for debate. Some epitomize Gandhari’s act of ‘disabling herself’ as a cause of being raised up from a mere human to someone with extraordinary powers ([30] Mahabharata, Book 1, Chapter 103, Verses 12 &13). This finds exact reflection in the words of Morris (1991): Disabled people—men and women—have little opportunity to portray our own experiences within the general culture, or within radical political movements. Our experience is isolated, individualised; the definitions which society places on us centre on judgements of individual capacities and personalities. This lack of a voice, of the representation of our subjective reality, means that it is difficult for non-disabled feminists to incorporate our reality into their research and their theories, unless it is in terms of the way the non- disabled world sees us. In contrast to attributing disability with evil inclinations, it has been accorded an extreme dimension of possession of superpowers. One finds with reference to Lord Vishnus’ appearance as a dwarf (Vaman Avatar) 36

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or as Narasimha (that is the features of lions and human being together) was to eliminate the ‘Raksas’ or the evil. This is also evident in the case of Goddess Durga possessing ten hands since she was created to kill the demon Asura wherein the physical exceptionality is justified as providing her with additional strength and power while exceptionality of ‘Ravana’ in Ramayana having ten heads which gives him the supernatural power. This evidently shows that whenever there is some abnormality or supernatural or deviation from normal behaviour, it is often associated with an evil spirit or with some God and Goddess or divinity. On the other hand, the same deviation in physical attributes of Goddess Manasha who was also one-eyed has been characterized as being revengeful as in the story of Behula-Lakhinder. Section X of the Sabha Parva cites instances of the husband of the three-eyed Mahadeva being surrounded by hundreds and thousands of spirits ‘some of dwarfish stature, some of fierce visage, some hunched backed and so on’. The Atharva Veda comprises many hymns pertaining to various illnesses causing disability and it restricts normal functioning of a human being in society. There are references to prayers pleading gods to free an individual from various worms that he might be host to (Book II: HYMN XXXI Verses 3, 4, 5) while Book II: HYMN XXXII speaks of consumption and prays from eradication. There is also a reference of prayers to gods to heal diseases. Book IV HYMN XVII refers to God Varuna being requested to put the man who tells falsehood in snares and to leave the man who tells the truth unharmed. In the same hymn, one finds reference of Varuna being adored as a God who sends and cures disabilities (‘8 Varuna sends and drives away disease: Varuna is both nature and stranger/ Varuna is celestial and is human’). There is evidence of a fervent prayer to Varuna to free the poet from all disabilities and to lead him to the path of virtue (Book VII; HYMN LXXXIV). Emphasizing on the concept of karma leading to the attainment of swarg or paradise in life after death the Atharva Veda Book 2 Hymn 34 and verse 5 lays down that May the realised ones, first of all, take the vital breath under their control from the limbs in which it has been circulating. Go to heaven stay firm with all the parts of your body. Attain the world of light and emancipation, following the path of the enlightened ones (your predecessors). This again confirms the view that disability results due to bad karma. However, one experiences a different approach to disability as he or she explores Manusmriti, the dictates of Manu the ancient lawgiver. It is important to bear in mind that though one does not come across the term disability in Manusmriti there are occurrences of other terms such as blind, deaf, idiot, dumb and cripple. One can clearly view a dichotomy between the approach 37

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of charity and neglect. While Manu advocates provision for charity, at the same time he certainly does not approve of equality of status, the right to inheritance and occupy significant administrative and decision-making positions. Even within this, the attitude of rejection is evident as he finds reference to rules for householders wherein they are prescribed to ‘wed a female free of bodily defects’. Physically and disabled people, women, people of low caste and aged were perceived at par with insects and dogs. The text states that ‘Even if a man has accepted a girl in accordance with the rules, he may reject her if something is despised, ill, or corrupted, or if she was given with something concealed’ (Law 72). In continuation to this, Law 73 clearly mentioned that ‘If anyone gives away a daughter with a flaw and does not mention it, that gift from the evil hearted daughter-giver may be annulled’ (Doniger and Smith, 1991: 205–206). According to Bhatt (1963) pity was an inherent characteristic associated with the ‘handicapped’ and stated: Pity is also a widely prevalent attitude. It is felt when the seriousness of the problem in question is recognized but there is no understanding of the condition. Pity towards the physically handicapped implies that the person who feels pity ‘cognizes the sorry state of affairs, but is also implies that the one who does pitying considers the object of pity less fortunate or less able than onself’. (103–104) Bhatt further elaborated that charitable and benevolent attitude was promoted by epics such as the Mahabharata and the laws prescribed by Manu. While the story of Mahabharata portrays people with different kinds of disabilities in a sympathetic manner, Manu’s laws provide context-specific laws to the householder, the king, etc. It specifies that it was the duty of the head of the family to maintain disabled relatives. It further specifies that ‘Let the king always treat a Srotiya, a sick or a distressed man, an infant and an aged or indigent man, a man of high birth and an honourable man’. However, at the same time it specifies that ‘at the time of consultation let him caused to be removed idiots, the dumb, the blind, and the deaf, animals, very aged men, women, barbarians, the sick and those deficient in limbs’ (Buehler, p. 150). Accounting for this it elaborates that ‘An epileptic man, who suffers from scrofulous swellings of the glands, one afflicted with white leprosy, an informer, a madman, a blind man and one who cavils at the Veda must (all) be avoided’ (p. 161). Through these instances, Bhatt concludes: ‘although the handicapped were treated with pity and compassion in ancient India, their rights to social equality were never recognized’ (ibid: 95). Even in the works of Kautaliya’s Arthashastra, one finds instructions for people to employ dwarfs, the hunchbacked and other deformed persons as political spies and secret agents. This greatly signifies the aspect of invisibility of the disabled people. This very much challenges their physical existence and significance in the mainstream society. 38

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Even in the context of Indian literature, one finds numerous references to disability and related cultural connotations. The tale of Prince Nala, ruler of the Nisadha people who was handsome and accomplished ascertains the belief that disability results due to past sins. Nala’s weakness for gambling and abandoning of his wife Damayanti resulted in him being transformed into a figure of deformity and ugliness- hunchbacked, pock-marked, lame and squinting. The tale ends in Nala regaining his charming physical form through his remorse and Damayanti’s forgiveness. A brief look into the legend of The Defeat of Mara, one finds a strong reference to deformity being strongly associated with evil. In a certain part describing Mara, the Evil One’s army, there is reference to the soldiers being more vicious and grotesque than ever comprising primarily of those who had hundred thousand mouths, others having horribly misshapen heads or hands or feet, some having tongues of fire, some gave themselves sustenance by swallowing serpents, some drank blood, some had grossly distended stomachs or legs and waddled absurdly. Hence any type of deviations in physical forms was grossly reflected and associated with evil and unacceptability. The ‘outer shell’ story from Panchatantra tells of the sons of King Amara Sakti, who were ‘supreme blockheads’. It explores the story of Vishnu Sharma, a learned Brahmin entrusted with the responsibility to teach statecraft to the stupid princes in 6 months through a series of amusing animal fables. It is rather interesting to note that at least two of the fable characters have the names of fools, i.e., a lion called Dim-Wit (Mandamati), and a foolish king addressed as ‘beloved of the gods’, a phrase sometimes used for an idiot.

Folk Tales and Ballads One finds a different perspective in folk tales and ballads of Bengal wherein mothers were held accountable for producing disabled babies though one is unable to find much evidence concerning their neglect. Two folk stories in which blind people are prominent are Kanchanmala: The Bride of a Blind Baby and The Blind Lover. The ballad of Kanchanmala is probably among the oldest in the collection. The story weaves around the arrival of a blind baby in Kanchanmala’s life, carried by his widower father, a Brahmin beggar keen to be relieved of the burden. Kanchanmala’s father promptly averts an evil omen by marrying Kanchanmala, aged nine, to the baby. A suitably heart-rending tale ensues wherein Kanchanmala, bewailing her lot, heads off into the forest with her new husband or toyboy. The babe’s eyes (and other deformities) are cured by a sage. At the age of six the boy is abducted and Kanchan wanders the earth seeking him. Eventually finding him later with a second wife Kanchan gets herself hired as their servant, and re-establishes herself in her husband’s affections. The second 39

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wife, Princess Kunjalata, soon learns the whole story and plots Kanchan’s removal. Expelled, Kanchan undergoes further vicissitudes and then meets her husband again, now a beggar with eyes blinded by continuous weeping. She resorts once more to the sage, who agrees to cure the blindness, only on the rather perverse condition that Kanchan return her husband to his second wife doing so ‘with perfect tranquility of mind’. Kanchan rises to the challenge; then wanders off into a sombre sunset signifying her devotion and self-sacrifice for her blind husband. The ballad of The Blind Lover, unveils with a handsome blind youth begging alms door to door, proclaiming his isolation and desperation, while his haunting flute beguiles the minds of householder and princess alike. The king appoints the young man to give his daughter flute lessons. The blind youth describes his life as a fluting beggar to the princess: I have no name, princess. They call me a ‘mad fellow’ and mock me. There are some who take delight in throwing dust at my person and annoying me in other ways, while there are kind men who receive me well. Some serve me with refuse food and think that the mad man would be glad at such an act of charity. Inevitably, the princess falls madly in love with him. The Pati-Ninda in Medieval Bengali literature occurs in early Bengali mangal poetry, often during descriptions of rural weddings. They signified verbal abuse by married women, denouncing physical defects in their husbands, e.g., elephantiasis, blindness, scoliosis, lameness, sexual inadequacy, ugliness, lack of teeth; and bewailing their misfortune in having to live with such repulsive creatures. Islam and Disability To illustrate Islamic attitudes towards people with disabilities, we will refer to the Qur’an, and the life example of Prophet Muhammad and his sayings, which are called hadith. In Islam, humans’ original nature is essentially good. The Islamic teaching holds that people are born pure and potentially perfect as evident in the Quran: ‘Verily, We created man of the best stature (mould)’ (95:4) and thereafter ‘Then do We abase him (to be) the lowest of the low,- Except such as believe and do righteous deeds: For they shall have a reward unfailing’ (95: 5–6). A close look at the Quran or the traditions of Prophet Muhammad (pbuh) shows little or no evidence of any direct reference to people with disabilities except in the context of jihad: Not equal are those of the believers who sit (at home), except those who are disabled (by injury or are blind or lame, etc.), and those 40

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who strive hard and fight in the Cause of Allah with their wealth and their lives. (4:95) In general, we find that the concept of disability, in the conventional sense, is not found in the Quran but rather concentrates on the notion of disadvantage. In Islam, a person’s worth is based not on any physical or material characteristics but on piety both faith in the tenets of Islam and adherence to Islam’s obligations to the best of ability. The Prophet most explicitly communicates this message when saying ‘Verily, God does not look at your bodies or your appearances, but looks into your hearts’ (Muslim, 2564). We find reference of Prophet Mohammad, taking special care to ensure that people with disabilities could attend prayers (Bazna and Hatab, 2005). Evaluating the position of the Quran and hadith on disability, Bazna and Hatab (2005) concluded that disability is considered morally neutral; it is neither a punishment from God nor a blessing, and it does not reflect any spiritual deformity. A human’s worth in the sight of God depends on spiritual development rather than any physical or material attributes. This is evident from Prophet Muhammad’s quote in the hadith ‘Verily Allah (God) does not look to your bodies nor to your faces but He looks to your hearts’ (Sahih Muslim, n.d., 32:6220). There are also several authentic traditions from Hadith that further elaborate how Islam accounts for those who are weak, and the position of the weak from the Islamic perspective. It is evident from the quote that specifies that If anyone of you leads people in prayer, he should shorten it for amongst them are the weak, the sick and the old; and if anyone among you prays alone then he may prolong [the prayer] as much as he wishes. (Al-Bukhari, 1.671) The Prophet said, ‘If someone leaves some property, it will be for the inheritors, and if he leaves some weak offspring, it will be for  us to support them’ (Al-Bukhari, 3.583). After all, God has promised us that our lives are a test for us. Degrees and forms of our trials vary from person to person, even family to family. However, it is up to us to have the fortitude, accept our fate, and then actively work to make the best out of them. Indeed, God has promised us that ‘So, verily, with every difficulty, there is relief’ (94:5) and that ‘Lay not on us a burden greater than we have strength to bear’ (2:286). There have been instances of Islamic history citing examples of people having some kind of disability being included in the mainstream society. One 41

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finds the mention of Abdullah ibn umm Maktum, who was blind, devoted to the Prophet and extremely eager to memorize the Quran being appointed to be one of the muezzins (calling the Muslims to prayer five times a day). The story of Julaybib, as reported by Shah (1999), provides an example of the Prophet’s efforts to make the Muslim society inclusive of the weak and  disadvantaged.  Julaybib was  described as  an ugly  and dwarfed  man shunned away from society. Upon the Prophet’s request, a noble family gave him their daughter in marriage. Later on, when Julaybib was martyred in a battle, the Prophet put his hand on his knee and said: ‘This one is of me and I am of him’. This humane gesture of the Prophet was a powerful demonstration of the principle of inclusion. It was a dramatic act of advocacy, in word and action, on the part of a community leader to educate his people about the importance of accepting others for what they are. The act of Prophet of approaching the family of the most eligible unmarried woman in Medina to seek the consent to marry her to Julaybib was a powerful demonstration of the principle of inclusion. Ibn ‘Abbas once said to me (’Ata bin Abi Rabah), ‘Shall I show you a woman of the people of Paradise?’  I said, ‘Yes’.  He said, This black lady came to the Prophet (peace be upon him) and said, ‘I get attacks of epilepsy and my body becomes uncovered; please invoke Allah for me’. The Prophet (peace be upon him) said (to her), ‘If you wish, be patient and you will have (enter) Paradise; and if you wish, I will invoke Allah to cure you’. She said, ‘I will remain patient’, and added, ‘but I become uncovered, so please invoke Allah for me that I may not become uncovered’. So he invoked Allah for her. An in-depth review of Islamic literature reveals that a significant number of blind, deaf or physically disabled people played notable roles as philologists, transmitters of the law, teachers, poets and social commentators such as Abu’l Ala al-Ma’arri, Abu Uthman Amr bin Bahr (Al-Jahiz), Bashshar ibn Burd, Ibn-Sirin, Qatada ibn Di’ama al-Sadusi, Muwaffaq al-Din Muzaffar and Thalab. Atta Ibn Abi Rabah was a Mufti (Islamic) scholar under the caliph (ruler) Abdul-Malik Ibn Marawan was paralyzed and lame, but because of the right to an education for the disabled under Islamic belief, he became one of the greatest scholars of his time. During the Medieval period the Mughal rulers also advocated of serving the disabled. They strictly adhered to the 5 rukans (duties) enshrined in the Holy Quran, one of them being zakat (charity). As Mani observes: The forms of this charity took were: alms to the poor and the infirm; construction of mosques, rest-houses, erection of ponds, hospitals and orphanages. The Mughals had a special department with a head (sadr) to supervise charities and endowments. 42

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However, the all compassionate outlook of Islam towards the concept of disability and the disabled people has been subjected to critical interpretation by several people and researchers. For instance Saulat Pervez (2014) in Why Islam highlighted that although Prophet Muhammad displayed compassionate treatment towards disabled persons in two cases as evident from his quote ‘These examples are important because they show that even though the Prophet, pbuh, was sensitive to their particular circumstance; he did not consider these to be things which should stand in their way of leading normal lives’, but it also conveys and reinforces an association between physical disabilities and disbelief in the dogma. This perhaps creates possibility in form of a scriptural justification for those who choose to ridicule the disabled: Those who reject our signs are deaf and dumb, - in the midst of darkness profound: whom Allah willeth, He leaveth to wander: whom He willeth, He placeth on the way that is straight. (Koran 6:39)1 But whosoever turns away from My Message, verily for him is a life narrowed down, and We shall raise him up blind on the Day of Judgment (Koran 20:124) Such are the men whom Allah has cursed for He has made them deaf and blinded their sigh.t (Koran 47:23) Though these verses may have symbolically mentioned the terms deafness and blindness they certainly ridicule those who suffer these adversities. Amar Alam (2014) in Muslim Ignorance about Intellectual Disabilities stated that the ‘unprecedented levels of prejudice and discrimination’ mentally disabled individuals suffer at the hand of Muslims, attributing this attitude to the ‘prevalent belief among Muslims … that intellectual disabilities are caused by mental illness, possession by Jinns, supernatural phenomena and punishment for previous sins’. Similarly, Ciftci et al. (2012) surveyed the literature on the stigma of mental health in Muslim communities and found that in addition to discrimination and ostracism; mentally disabled Muslims also suffer from lack of professional treatment due to their families’ unwillingness to report their condition. Another perspective that finds reflection in the religious text is with reference to children born with congenital defects are a test for their parents. It gets transmitted that irrespective of whether a child is born healthy or handicap, in Islam he is Masoom, i.e., sinless. There is no question of the child being handicapped due to a carried forward baggage of past sins from ‘a previous life’. Such a belief will not inculcate a charitable attitude in others. Others might say that the child deserves his birth defects or the handicap since it is a result of his ‘bad karma’. Islam states that such handicaps are a type of test for the parent whether they are yet thankful towards their 43

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Creator or not. There is a famous saying that a person was sad because he had no shoes to wear until he saw a person who had no feet. It is mentioned in the Quran: And know ye that your possessions and your progeny are but a trial; and that it is Allah with Whom lies your highest reward. (Al Qur’an 8:28) This establishes the opinion that Allah (swt) may be testing the parents whether they yet are thankful to their Creator or not. Maybe the parents are righteous and pious and deserve Jannah. If Allah wants to give them a higher place in Jannah, He will test them further, e.g., by giving a handicapped child. Yet if they are thankful to their Creator, they will deserve a higher reward, i.e., the Jannatul Firdous. Buddhism and Disability In Buddhism, one finds a symbolic representation of the concept of disability. Buddhism conceives of the Universe to comprise of a number of spheres called Chakravala each with its own earth, sun, moon, heaven and hell. Each of these spheres further comprises of three regions the highest being that of Arupe or formless, then Rupe or form and the lowest Kam inhabited by the four rulers of the cardinal points, the 33 gods, the Yamas, the Tushitas, Nirwanratis and Parinirmit-vashwavartins and men Asuras (demons), Pretas (ghosts and demons), animals and the denizens of hell. One finds frequent reference to the law of karma which was found to rationalize the act of feeling disadvantaged thus highlighting that we will ourselves be so treated, and will have deserved such treatment by our own ‘callousness’ (Sharma, 1999). One finds an identical reference account in Buddhism: The blind of this world bear a heavy burden for past failure to tell the way clearly to travelers. Some people’s mouths are very misshapen. They blew out lamps on the Buddha’s’ altars. To be deaf and mute is a dreary existence. Reward appropriate for scolding one’s parents. How do people get to be hunchbacks? They berated and laughed at those bowing to Buddha’s. (Buddhist Text Translation Society, n.d.) Sallie B. King (2009) also provided a similar conclusion that popular understanding based on the idea of karma has provided a rationalization for people to turn their backs on the disabled. 44

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… This interpretation of karma has been subjected to severe criticism by modern reformers in countries like Japan who account Buddhism for much of the super-added suffering of disabled people beyond the physical suffering directly caused by their disabilities— their rejection by society, their treatment as pariahs, and the lack of interest in helping them. (p. 163) Buddhism, bases its viewpoint that suffering is a universal human experience and that while a given kind of suffering has a specific cause, suffering as such is common to all. The Buddhist tradition claims that various disabling conditions are universal, and the response to such suffering is to be compassionate. Presumably, this response would bring some mitigation of suffering. The bonds of karma are still present, and though there are (at this point) no healing miracles that can release one from present suffering, but there is a means of, and hope for, improvement through a suitable life bringing karmic rewards. It engulfs within its purview physical or psychological pain (dukkha-dukkhatā), as well as that which is part general existence (sankhāra-dukkhatā), and change (vipariņāma-dukkhatā). The specific cause of suffering, which is of great concern in relation to disability, is paticca-samuppāda, or dependent origination, which leads to the chain of cause and effect. It begins with ignorance, and leads to suffering as a result of craving for sensual phenomena. It is ongoing, producing results in accordance with what has gone on before.  This product is the karmic cycle, whose pattern is stated by Gautama as: These beings, on account of misconduct of body, speech, or thought, or disparaging the Noble Ones, have wrong view and will suffer the karmic fate of wrong view. At the breaking-up of the body after death they are reborn in a lower world, a bad destination, a state of suffering. Highlighting on the perspective of disability being subjected critically under the result of mistakes committed in past lives Bejoian (2006) had stated that: While causality—cause and effect—certainly is the basis for karmic understanding, all one’s past lives contribute to and create one’s current life. Thus, the commonly held belief about disability that there is an obvious and linear causality is extremely insufficient and inadequate. Srivastava (2002) however offers a perspective highlighting the double jeopardy imposed by karma in the context of mental illness: Suffering is inevitable. It is in this way that one can neutralize the effects of bad karma. This ideology built upon the will of god and karma generates paradoxically two views: first, may be indifferent 45

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to a person suffering from illness (mental illness included) because his suffering is a pronouncement of divine justice, therefor inevitable. the other attitude this ideology generates is of compassion. If one casts aspersions at mentally ill patients, one accumulates bad deeds, for which one shall have to undergo divine malediction in the next birth. Therefore, one should sympathize will the ill and their families and pray that they may be cured. (p. 157) Buddhism intervenes later and promotes a more tolerant attitude towards disabled people by emphasizing the virtues of ‘mercy, charity, truth, purity, kindness, goodness and above all, nonviolence’. The reign of Chandragupta Maurya, according to Bhatt (1963) initiated measures to ensure vocational rehabilitation of those who were considered physically, socially and economically handicapped within the kingdom. The benevolence of King Ashoka extended philanthropic work on a mass scale in keeping with the precepts of Buddhism. Compassion may be seen most notably in the acts of the legendary King Ashoka, who established institutions for disabled persons in the third century B.C.E. These institutions are known to have existed until at least the fifth century C.E. There are reports of disabled persons who were provided with free food during the twelfth century. The centrality of compassion is also expressed in the  Dīgha Nikāya, where we find it placed as a personal ideal of Gautama: Abandoning the taking of life, the ascetic Gautama dwells refraining from taking life, without stick or sword, scrupulous, compassionate, trembling for the welfare of all living beings. There follows, by way of explanation, a long list of qualities that the follower should practice. Included in a long list of amusements which are prohibited such as ‘idle pursuits’, ‘mimicking deformities’. Also prohibited are ‘deception, … belittling, … and [being] always on the make for further gains’. This prohibition is repeated in another sutra which includes a charge to be actively involved in positive work and ethical conduct. With reference to the texts of Buddhism one finds mention that some of the Buddha’s disciples were physically disabled. Ý Khujjuttarà was a hunchback and Bhaddiya was a dwarf. The first was praised by the Buddha for her great learning and the second for his beautiful voice (A.I, 23:26).  Khujjuttarà attained the first stage of enlightenment and Bhaddiya became fully enlightened (S.II, 279). These indicate that being physically disabled is no barrier to spiritual attainment. It was regarded as an offence if monks or nuns did mimicry of physical disabilities as evident in yathàvajjenakãëanti, Vin.III (179). One finds reference to cleansing in the  Dhammapada, we find a series of sayings about cleansing. Hate cannot be overcome by hate, we are told. 46

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The commentary adds that spots cannot be cleansed by washing with the ‘same impurities’, but that one must remove hostility by the ‘clear water of patience’. Dīgha Nikāya specifies that a follower should not belittle or mock persons who are different. That persons are more alike than they are different would be the disability perspective of a couplet in Flowers: ‘knowing this body to be like foam / awakening to its mirage nature’, to which the commentary adds that there is an appearance of form, but closer inspection finds otherwise. The idea that a body is not the essence of the person is liberating for disabled persons. Their true nature is not in the limitation that the body imposes. However, a critical look reveals that the same section says that as a lotus can bloom in a heap of rubbish, so can the disciple shine among the ‘wretched, blinded ordinary folk’.  The condition specified here is not physical blindness, but a distinction of awakened and non-awakened persons. Even specifications for eligibility for monkhood mentions that a person could not be ordained in cases where persons are guilty of murder,2 robbery,3 or one who has broken jail,4 a debtor,5 or one who has been punished by scourging,6 is a eunuch,7 slave or one afflicted with a certain disease or suffering from other disabilities referred to in the following catechism which the supplement had to answer: Are to afflicted with the following disease?- leprosy, boils, dry, leprosy, ­consumption, and fits? Are you a man? Are you a male?..... One finds reference to the term blindness in symbolic use. In conversation with his father’s minister Buddha had replied that It is not for me to accept a theory which depends on the unknown and is all controverted, and which involved a hundred prepossessions; which wise men would go by another’s belief? Mankind are like the blind directed in the darkness by the blind. (Buddh Charitra, IX-64; 49. S.B.E., 101, 102) One also finds mention of several other examples of disabilities and related material in the Jatakas No.s 1, Apannaka-J. (blockhead eaten by goblins);  41, Losaka-J (street child, abandoned, begging, forever starving);  80, Bhimasena-J (Bodhisatta as a crooked dwarf);  107 Salittaka-J (cripple on a little cart, expert at stone throwing);  171, Kalyana-Dhamma-J (misunderstanding through hearing loss); 184, Giridanta-J (lame horse-trainer, limping horse); 193, Culla-Paduma-J (maimed robber); 202 Keli-Sila-J (wanton cruelty to the elderly); 221, Kasava-J (city charitable organisation); 232, Vina-Thuna-J (silly girl elopes with hunchback);  346, Kesava-J (alms with 47

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love better than alms given to acquire status); 424, Kusa-J (long story in which a hunchback maid plays an important part.

Conclusion ‘The persistent thread within the Christian tradition has been that disability denotes an unusual relationship with God and that the person with disabilities is either divinely blessed or damned’ and points out that, as is true for any such characterization, ‘neither represents the ordinary lives and lived realities of most people with disabilities’. (Eiesland, 1994: 70–71) Eiesland argues that existing theological paths are inaccessible and that people who value the experiences of disability must forge our own paths. The debate centring around the impact of theology/religion on disability has held the focus of several scholars since time immemorial. Arguments have varied on the narrow view of religion perceiving the disabled as elements of ‘pity’, ‘ignorance’, ‘sympathy’, ‘curse’ to the new theological basis and reflection according to which they no longer should be reduced to the status of being a mere spectator/victim or assessor of religious belief/practice. Bhatt reflecting on the ideals of Christianity in the West and Buddhism in the East states that disguise under ‘care and protection’, harsh practices of killing disabled people were put to an end, but by and large maintained traditions of social ostracism towards blind and lame people. Even Disability Studies have subjected religion to a critique view primarily based on the conventional attitude and treatment it has meted out to persons with disabilities. One finds reference to this in Albrecht et al. (2001)  Handbook of Disability Studies wherein while discussing a few religious traditions and puts forth their contradictory points as: ‘Writings from the Old Testament suggest paradoxical attitudes, which exhorted society to be generous and kind toward individuals with impairments, while also declaring that impairment was a mark of the wrath of God’ (p. 17). They further elaborated that  Hinduism, ‘Religion—over time and across societies—has been a particularly potent force in separating people as abnormal’ (p. 528). Religions permeate all aspects of our lives and Dellassoudas (2000) aptly stated that spiritual beliefs may greatly influence perceptions of people with disabilities, of themselves, others, and the world. However much deliberations and research on religion and disability over the last few years have enabled disability scholars and other researchers to raise questions pertaining to diverse areas related to persons with disabilities in areas, such as the influence of religion on people with disabilities and their families as part of a system of care (Benjamins, 2005; Forster et al., 2007; Hurst, 2006; Selway and Ashman, 1998), access to worship, theological education and ordination (Webb-Mitchell, 1998; Herzog, 1998). 48

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For instance, Yong (2007) in Theology and Down Syndrome: Reimagining Disability in Late Modernity, while understanding Down syndrome as a medical condition advocated ‘explicitly theological models’ as the best means ‘to empower the social liberation of people with disabilities’ (150) and later in  The Bible, Disability, and the Church (2011) through a sustained interrogation of the biblical text attempted to reform Christian thinking about disability. Scholars are also exploring alternative framings for disability theology for instance Creamer (2008) in  Embodied Limits proposed a theological understanding that emphasizes the human limits intrinsic to our created nature. In keeping with the urge to usher in the new approach Eiesland rightly remarks, ‘New religious images, values, and ideas about disability are essential as we seek to live our ordinary lives. Without them the barriers that people with disabilities encounter, while they may occasionally be lowered, will never be demolished’ (Eiesland, 1998: 28). Hence one can conclude with the hope for what Eiesland summarized as: A liberatory theology sustains our difficult but ordinary lives, empowers and collaborates with individuals and groups of people with disabilities who struggle for justice in concrete situations, creates new ways of resisting the theological symbols that exclude and devalue us, and reclaims our hidden history in the presence of God on earth. (Eiesland, 1994: 86)

Notes 1 All Quran quotations from Corpus​.Quran​.c​om. 2 Mahavagga- I-64, 65, 66, S.B.E., 219–221. 3 Ibid 1–41, 13, S.B.E., 196, 198. 4 Ibid 1–42, 13, S.B.E., 197. 5 Ibid 1–46, 13, S.B.E., 199. 6 Ibid 1–44, 13, S.B.E., 198. 7 Ibid 1–61, 13, S.B.E., 215.

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4 FROM DOSTI TO MARGARITA WITH A STRAW Representation of Disability in Indian Cinema

Cinema: A Reflective Lens Entertainment is a term which seems to be used with dint of contempt, based on the rationale that it always denotes entertainment. However, a primary question emerges: ‘Is it actually so?’ A critical view makes it clear that there are two implicit dimensions to it. One dimension highlights and glorifies the issue of aesthetic judgement wherein entertainment is projected as fun, trivial etc while the other dimension demarcates insignificant entertainment, i.e., insignificant from the aspect of truth or reality, thus denoting the dimension of political judgement. It is a common objection that realism is not dominant in Indian cinema today. Andre Bazin, one of the greatest realist critics, mentioned that one of the basic criteria for a film to be realistic is that it must locate its characters and action in a determinate social and historical setting. Most Indian films fail to do this and more so when it comes to movies showcasing people with disabilities. Elaborating on Bazin’s argument it is necessary to consider that it is not just the representation of reality that raises concern but also the need to ensure that this is accomplished through the use of the aesthetic device. Elaborating on the use of convention within the cinema, Bazin mentions that such use may be made at the service or at the disservice of realism, it may increase or neutralize the efficacy of the elements of reality captured by the camera … One can class, if not hierarchize, the cinematographic styles as a function of the gain of reality they represent. We shall call realist any system of expression, any narrative procedure which tends to make more reality appear on the Screen. This argument also finds grounds in the words of Schroer (2012) that ‘films thematize, visualize and condense social issues and problems, but do not provide a comprehensive theory about the functioning and structure of society and do not want it at all’ (21). Schroer specifies that ‘society’, ‘sociology’ 50

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and ‘cinema’ cannot be equated since, despite their similarities, they differ fundamentally. Highlighting the ‘sociological assumptions’ of an analysis of the film as a ‘social phenomenon’, Mayer in his work ‘Sociology of Film’ (1946) and in ‘Max Weber and German Politics’ (1944), questioned its ability to shape ‘political opinions’. Addressing the ‘emotional’ and ‘moral’ impacts films have on the audience, he enquired if films imparted ‘ethical values’ related to the ‘real norms’ and the probable relationship of both ‘norms of films’ and ‘real norms’ in the construction of ‘absolute value’ standards. He strongly argued that ‘films’ and ‘moral standards’ are inseparable since the power of visualization itself creates ‘values’, and even though films are pure entertainment it is impossible to provide entertainment detached from ‘moral norms’. He further emphasized that ‘since the traditional structures of life are uprooted and about to disappear altogether, the modern moviegoer seeks mystical participation in screen events’ (19). His arguments become quite evident in the following statement: The example of pre-Nazi Germany made me inclined to believe that even so-called non-political films can become an instrument for shaping political opinions. Consequently, I am less interested in the intricate psychological mechanisms which seem to underlie film reactions than in those structural features which may help us to explain the sociological implications of films. (Mayer, 1946: 267) German theorist Siegfried Kracauer (1966) emphasized that films tend to reflect the ‘mindset’ of a nation more directly than other artistic media: What films reflect are not so much explicit credos as psychological dispositions those deep layers of collective mentality which extend more or less below the dimension of consciousness […] In recording the visible world whether current reality or an imaginary universe films therefore provide clues to hidden mental processes. (6–7) In support of the ‘mirror metaphor’, Kracauer argued that it is essential for us to look into this ‘mirror’ since films ‘reflect reality’. Within the cultural studies perspective, work on communication is essentially concerned with the construction of meaning, i.e., how it is produced in and through particular expressive forms and how it is continually negotiated and deconstructed through the practices of everyday life (Murdock, 1989). This hence involves the analysis of cultural texts, including those produced by the media industry. The cultural study approach visualizes media forms as mechanisms for ordering meaning in certain ways much in contrast to the transportation model, which considers documentaries, operas, soap as 51

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mere commuters of meanings or messages to the audiences. Critical studies also engulf within its purview a primary concern of the manner by which the audience will interpret the media artefacts and incorporate them into their viewpoints and lifestyles. Apart from the role of various social institutions, materialists and poststructuralists have explored and highlighted the importance of culture and media in justifying and maintaining the exclusion of those defined as ‘other’ (Abberley, 1987; Barnes, 1991; Shakespeare, 1994). Barnes (1996) held that there is a need to see current social responses to impairment as a cultural product of the interaction between the means of production and central societal values. The significance of the use of cultural images as a medium to socially construct the unwelcome ‘other’ has been the focus of research among several theorists. Several works have criticized the use of negative imagery by general media and in literature which regards the differences as unacceptable, evil or a punishment from God (Barnes, 1991; Hafferty and Foster, 1994; Shakespeare, 1994). For instance, charity advertisers are shown to be especially fond of using images of people with disabilities that are designed to evoke feelings of guilt, pity and sympathy in non-disabled people, as a means of persuading the mainstream population to make more donations (Hevey, 1992). Cinema continues to be a powerful medium to reflect the incidences in the society which has transformed it into a medium caught between the real and the surreal. Publicly and privately our lives have become so permeated with movies that we rarely bother to think carefully about them. This has also caused its receptors to believe in the power of cinema to change the world while there are others who say that its chief purpose is merely to entertain people. A film on disability typically involves the portrayal of one disability or another in a way that is meant to communicate a specific message or perspective. Fraser (2016) asserts in Cultures of Representation: Disability in World Cinema Contexts that the importance of studying films from diverse cultures results in understanding disability as a culture-specific and geopolitically defined corporeal condition. According to Fraser, film, as a medium with higher ‘representational significance’, becomes ‘a reflective mirror, a productive expression or theoretical ground for the integration of perceptions and concepts that informs our socially negotiated understanding of disability’ (7). Many films strive to create a sense of inclusiveness and awareness, thereby eliminating the apparent social stigma associated with disability. The experiences of people with disabilities have become a subject of many film-makers across the globe. The imagery surrounding disability in films seems to range between pity, fun, sympathy, awesome heroism at one end and sympathy, discrimination and coping up at the other. Such has been the trend of cinema throughout the world. Disability has indeed become part and parcel of film making, attempting to portray people with disabilities—their problems 52

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and potential. However, in the long run, it is imperative to mention that there have been films that have succeeded in this endeavour while others have simply used disability as a tool to enhance the appeal of the script, dramatize it and construct a heroic image of the character, accentuating him or her as a champion of the downtrodden. Against this background, it is hard to analyze the representation of disability in Hindi cinema. This chapter will analyze films in two sections: Hindi films and other Indian regional language films. Some movies such as Dosti (1964), Koshish (1972), Sparsh (1984), Nache Mayuri (1986), Anjali (1990), Khamoshi (1996), Black (2005), Iqbal (2005), Taare Zameen Par (2007), Paa (2009), Barfi, Margarita with a Straw (2015) etc. reflect a more committed approach to address various issues of people with disabilities in mainstream cinema, drawing attention to their day-to-day struggles of people with disabilities, their sensitivities, the difficulties they face in procuring jobs (in the absence of reservation policies), as well as their loneliness and need for companionship, friendship and marriage. An authentic effort was made by director Satyen Bose through his film Dosti, a remake of a 1959 Bengali film (Agradoot’s Lalu Bhulu). It is a classic ‘underdogs’ tale narrated entirely from the standpoint of the two physically challenged, impoverished but gifted boys who surmount all the odds stacked against them.  The story revolves around one who sings and the other who plays the harmonica as they perform on the streets of Mumbai, both singly and in tandem, to raise the money that one of them needs to get into school and complete his matriculation. A genuine effort towards providing a glimpse into the complex world of the hearing challenged impaired and their relationships in society was attempted by Gulzar in Koshish (1972) who wanted to advance the concept of an inclusive society. Sanjeev Kumar and Jaya Bhaduri in the lead roles did an excellent job and the film to this day is a landmark in the history of disability highlighting the pains and struggles of a deaf-mute couple, helped along by a friendly visually challenged man, to live a full life in a desensitized society. Sparsh (1984), another film made with a great deal of sensitivity looked into the complex world of a visually challenged person. It showcases how the love between a visually challenged person and a sighted one becomes the microcosm of the apprehensions and frictions that the marginalized experience while negotiating with the mainstream society. The film upholds an important principle that people with disabilities want to live independently, to be accorded dignity and respect by other sectors of the society. It argues for the need to treat them as integral members of the society rather than treat them as objects of sympathy. Naache Mayuri (1986) based on the real-life struggle of a Bharatnatyam dancer Sudha Chandran having lost one leg in an accident highlights the protagonist’s achievement of the highest glory in her chosen field with the help of an artificial limb. This movie upholds the determination and the passion of the woman with a disability 53

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to establish her own identity rather than be treated as an object of sympathy and helplessness. The film Anjali (1990) opened doorways for a more sympathetic approach to the realm of the unknown. Director Mani Ratnam skillfully weaved the story and exposed the viewers about a dying mentally disabled child, and the emotional trauma experienced by her family. In spite of certain commercial inputs such as hysteria, suspense and others that go towards making a film successful the movie made an attempt to rectify the mindset of the Indian masses by encouraging them to adopt an acceptance rather than a dismissive approach towards disability. However, the film failed to highlight the aspect of institutional care for the autistics. Inspired by a German film Beyond Silence, Sanjay Leela Bhansali made Khamoshi (1996), starring Salman Khan and Manisha Koirala, focusing on the living conditions of a deaf couple. It reinstates a child’s dilemma between dutifulness towards her differently abled parents and her own life aspirations and this two-way struggle makes this a perceptive film. Films such as Phir Milenge (2004), Black (2005), 15 Park Avenue (2005), Iqbal (2005) and U, Me Aur Hum (2008) grappled with issues of multiple disabilities, AIDS as a human rights discourse, and the complex realities inhabited by subjects of psychiatric as well as physical impairments. Phir Milenge (We’ll Meet Again) in 2004 directed by Revathi and inspired by the Philadelphia on the subject of AIDS centred on Tamanna Sahni, a dedicated staff member of a top advertising agency whose life turns upside down with her acquiring AIDS. The movie attempted to address the rights of the character with much determination. Addressing a similar cause was My Brother Nikhil (2005) which portrays a sister’s love struggle and support against the crippling stigmas of AIDS which can lead to family and social abandonment, and even imprisonment. 15 Park Avenue (2005) addressed the challenges of Meethi, a schizophrenic through a critical examiner’s lens. The film attempted to address a lot of issues ranging from the unique world of a disabled person to the unequal status of a female even in today’s modern India and also the twisted relationships in a tattered family. The helplessness of Meethi while she works as a journalist in a rural eastern state really gives us all a naked picture of the real society in which we all live. The film did leave its audience with a sense of unquenched thirst within to watch a cinema with a strong purpose. The movie Iqbal (2005) was a realistic attempt to expose sports politics and the gruelling class divides between rich-poor, rural-urban by highlighting a deaf-mute village boy’s dream to play for the national cricket team. It reinstated the need to understand and support the aspirations of persons with disabilities. Likewise Black (2005) a creative adaptation of the 1962 Hollywood film The Miracle Worker starring Anne Bancroft and Patty Duke directed by Arthur Penn, showcased the triumphs and tribulations of 54

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Michelle, a girl who lost her eyesight and hearing after recovering from an illness at the age of two. The film unfolds her life in a black world where she is isolated in the darkness of her own existence, trapped by her inability to see, hear and express. The movie focuses on the life of a strong-willed and an ambitious girl with a milestone to reach in her life. The student with multiple afflictions (being hearing and visually challenged), through the guidance and support of her mentor (who himself develops Alzheimer’s in his advancing years) and by sheer force of will, completes her graduation. Barfi (2012) illustrates desperate lack of healthcare for the Indian poor and the exploitation of the persons with disabilities through the story exploring the love of a deaf-mute man for an autistic woman. Despite inaccuracies on certain dimensions in the depiction of disability the film fruitfully draws us into the world of the disabled without carrying the weight of pity. This indeed was a breakaway from the stereotypical notion that persons with disabilities were not entitled to make decisions concerning their own lives and lead a healthy family life. Aamir Khan’s Taare Zameen Par (2007) created huge awareness about dyslexia, a condition where a person has difficulty in reading and writing. Even Karan Johar’s film, My Name is Khan (2010), turned the attention of its audience to autism. Amitabh and Abhishek Bachchan starrer, Paa (2009) showcased human emotions as Paa clarified what defines a child and how one’s childhood is upstaged when one is affected by progeria. It also intensely explores a parent’s resilience and trauma accepting the death of her dying child. Entertainment has touched the masses where prosaic activism had failed. Margarita with a Straw (2014) has been the latest in a long line of renowned films. The film defies some of the stereotypical notions centering persons with disabilities and the storyline very intelligibly and sensitively showcases a young woman’s determination to live and love on her own terms, throwing away the chains of her dual marginality, of gender and cerebral palsy. Writer-director Shonali Bose’s second feature film, Margarita With a Straw goes beyond her protagonist’s disability and presents her as a strong-willed woman with normal urges and aspirations that she is determined to fulfil. She skillfully portrays the protagonist’s voyage of sexual discovery that takes her from Delhi to New York and back—and across and over many a daunting barrier erected by society and her own physical constraints. Hichki (2018) which aimed to explore the journey of a woman with Tourette syndrome who overcomes all struggles to turn her weakness into her biggest strength does resonate with the audience with its simple lens, language and narrative context, as well as achieves the artistic effect of conveying values and positive energy. However, it is essential to point out that although the story tends to dilute a little as it incorporates certain negative characters in order to Naina’s achievements, thus resulting in her image getting bigger than the cause. At the parallel end, the movie also attempts to 55

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address the policy of inclusion that does not only need to create an awareness but needs more intense treatment. A movie that sets itself apart is Rupam Sarmah’s One Little Finger (2019), produced in the United States and India based on the theme of ‘ability in disability’, is a drama focussing on real-life stories showcasing the efforts of an American neurologist using music to bring people with disabilities together and inspiring them to challenge themselves. The distinctive characteristic of the film lies in its ability to feature children and young adults with disabilities. The inclusive character of the movie is all embraced in the following words of Jeeja Ghosh and Sayomdeb Mukherjee: Being a part of this film has been the most fulfilling experience. I would call it an epitome of inclusion and more importantly, it came from the people who perhaps had little exposure of interacting with persons with disabilities. There was no charity involved. (Jeeja Ghosh, Times of India, 2019) Roping in renowned artistes to portray these characters was possible. But it’s nice that persons with disabilities and those who want to act have been given a chance to tell their own story. We shot for long hours too. The film unit didn’t have to compromise on any part of filmmaking because of us. (Sayomdeb Mukherjee, Times of India, 2019) A band of talented directors, screenplay writers and actors have come through the generations, to shred the much scoffed melodramatic or caricaturist approaches of mainstream film making. Through these new series of films, it is becoming persistently evident that issues are emerging through figures of disability that are central to the plot and action rather than the previously marginalized and stereotypical images. This has resulted in the figures being closely integrated with re-examining the processes of upward mobility and social stigma in contemporary contexts. It is to be noted that some of these films have brought to the public sphere certain conditions and opened up the forum for discourse which were not known to many such as dyslexia, Alzheimer’s (U Me Aur Hum, 2008), progeria, autism (My Name is Khan, 2010) to name a few.

Other Indian Regional Language films Bengali cinema witnessed the emergence of a generation of film-makers who made attempts to address disability-related issues through their professional lenses. When one flips through the pages of cinematic creation there appears to be quite a variedness in addressing them. Although the concept of inclusiveness has acquired limited attention yet efforts are being made by several 56

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film directors to deny binary identity categories such as normal-abnormal, abled-disabled and many more through the recognition of alternative ways of being. The film Sati (1989) revolves around a Brahmin speech-impaired village girl; Uma from Bengal, who in order to be saved from untimely widowhood is married to a tree and subjected to untold exploitation by her extended family. The movie highlights the double marginalization that a woman with disability experiences in a society where in women are already subalterns with limited power of speech. It is to be noted that Uma’s character portrays one’s subjugation to patriarchy, poverty, religion and history. The movie highlights Uma’s desire to live her life whereas her silent body craves the urge to be loved. However, Uma’s rape by the married village schoolmaster designates that she not being a complete idealized woman makes her a far less legitimized subject for craving than any normal woman. The story ends with pregnant Uma’s death being crushed by the huge tree (her husband). Another Bengali movie that highlights insensitivity among people to understand the needs and desires of a person with disability is Paromitar Ekdin or House of Memories (2000). The story revolves around a mentally challenged girl, Khuku, who is very often referred by others as a schizophrenic, a liability and an embarrassment by her mother, and Sanaka, for her obese and awkward body and an ‘unstable mind’. The movie gradually unfolds and projects before the audience, Khuku’s character of being a caring, strong-willed woman who stands by her mother in the time of loneliness and her strength to care for her physically disabled nephew. At the same time, the film shows how psychological disorders can negate one’s awareness about the public perception of their insufficiency. The film also raises significant issues centring the execution of gender roles in several frames as wherein Khuku who despite considering herself eligible for the expected feminine roles experiences a dilemma being unable to understand why she is being subjected to physical punishment behaving as a wife or mother. The movie also effectively communicates across different degrees of marginalization and subjugation, the emotional turmoil that Paromita (Sanaka’s daughter-in-law) and Sanaka are made to experience by the society for being bearers and mothers of children with disabilities. Through the characters the director very skillfully weaves sensitivity particularly towards persons with disabilities towards the end when Paromita and Sanaka decide to take Paromita’s son to a school for children with cerebral palsy. A movie that effectively and realistically communicated experiences of persons with disabilities is Tapan Sinha’s  Wheel Chair  (1994). It highlights the conviction and strength to live life overcoming obstacles that are depicted through the characters of Dr. Mitra (Soumitra), who himself being a paraplegic, along with his assistant, Santu (Arjun), helps Sushmita, who becomes paralyzed below her neck, regain her motor skills. Most Indian films dealing with some kind of mental illness do not really throw light on the biological or social approach thus often filled not only 57

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with logical loopholes but misinformation. One must admit that some of these movies had considerable mass-market appeal, and were visualized to represent a large section of the society. Also being commercial films most of them were oriented to generate entertainment rather than education/awareness. Hence they were not necessarily based on strong foundation of research, thus deviating from presenting a scientific understanding of mental illness. As a result, they have often been reduced to a romanticized depiction of the disease used either as a cinematic strategy to draw the empathy of audience of a given actor or make it more compelling and get better reviews and public attention or even tailored to the actor’s desire to explore this disease via his/her performance. However, some of the Bengali films that have left an imprint in generating awareness among the general masses about issues concerning disability which does not usually attract the attention of conventional movie makers have ushered in a change. Highlighting the plights associated with disability, Meghe Dhaka Tara (2013) directed by Kamaleswar Mukherjee inspired from the life and works of Bengali film director Ritwik Ghatak portrays Ghatak’s experiences in a mental asylum. It highlights innumerable instances of the protagonist of the film Nilkantha an artist being subjected to mockery by everyone as ‘a wasted drunkard’, ‘disgraced intellectual’. It unfolds with Nilkantha under such circumstance overcoming all to stage a play. Another movie that needs mention is Shabdo (2013) by Kaushik Ganguly which revolves around the life of Tarak, a foley artist of Bengali film but gradually gets so obsessed with his work and trapped in his own world, a world full of sound (i.e., Shabdo). Even with the doctor attempting to convince Tarak that he has a serious problem and needs treatment, he embarks on complete denial. The story portrays the journey which concludes with the doctors sending Tarak to a rehabilitation centre where he is made to listen to recorded human voices daily to get back to normal. Shifting away from the usual plot of focusing only on a character with disability, Deep Jweley Jai (1959) is a film set in the backdrop of a psychiatric hospital and explores the life of a nurse, Radha, who is a part of a team exploring new therapy for patients who have suffered emotional trauma. The movie very skillfully addresses the neglected emotional trauma of a nurse who was used merely as an ‘instrument’ in the whole process of therapy and ends with her last words ‘I wasn’t acting, I couldn’t’ as she herself is led into the same ward where she used to be a nurse. This, however, subtly communicates the patriarchal and curative approach also. The male character Tapash who was admitted to the hospital is shown to recover and leave, but the story offers an exemplar for the Indian woman who serves the male counterpart and through her selfless service he gains his able body back. Though there is no denying that the medical profession is based on the foundation of service, the romanticized aspect of the movie has also created 58

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the need to be concerned about the mental well-being of selfless caregivers. The movie ends without any clue regarding Radha’s future wherein she is left behind the hospital walls. Another movie that slightly moves away from the conventional mode of addressing disability is Gautom Ghose’s Dekha (2001), which revolves around the life of an ageing poet afflicted with  Glaucoma and centres on the cultural milieu of post-Independence Calcutta. The seen and the unseen worlds of the protagonist Shashibushan are inextricably intertwined into a mixed metaphor of modern allegories. His character is marked in shades of grey and black. The movie relays within its frames a narrative centring on several issues of the marginalized, ranging from their marital discord to communalism, to their longing desires and declining habitat in society. The story reaches a climax wherein during a holiday in the country and while being looked after by Sarama, his teacher’s daughter Gagan, a visually challenged (from birth) singer enters their lives. This once again takes Shashibhushan down the memory lane about his estranged wife and daughter and his turbulent life. The movie very effectively communicates that gerontological issues, poor health condition and infirmity, and disability among the elderly lead them to confinement, reduced social contact, loneliness, depression, the prevalence of morbidity, etc., but at the same time is also reflective of Shashibhushan’s guilt about his complicated relationship with his wife and daughter, his affliction with glaucoma, sense of being jeopardized and excessive alcohol consumption which hampers his sexuality. The movie addresses an aspect that Shashibhushan is isolated and has desires which he seeks to fulfil, and which each person is entitled to, but the question that arises here is, if Shashibhushan had not lost his eyesight would he still have been the same person? Within each frame, there is an element of helplessness that he associates with his declining physical state and progressive loss of sight. As one shifts to films in other regional languages a wide spectrum of movies emerges with mixed impression. The Tamil movie Netrrikkan (The Third Eye) (1979) depicts disability from the perspective of punishment for sins and being subjected to a fitting ordeal. The protagonist of the movie is portrayed as becoming wheelchair bound and impotent resulting from his lascivious ways of life. Similarly, the villain of the Malayalam film Roudram (2008) is shown as left surviving with his foot crushed under a car for all his misdeeds which the protagonist of the film (Mammootty) justifies by stating that ‘You deserve a life filthier than death. To repent for the sins you have committed, you must live with this half body, to crawl and feel the hell of life before you die’. This statement without any doubt clearly portrays how disability is equated with punishment, disablement and repentance which certainly cast an irrefutable impact on the mindset of the viewers. Attempts to look through several other films that address disability on similar grounds revealed quite a few of them such as Vazhai Yadi Vazhai (1972), Arangetram (1973), Santhi (1965) later remade in Hindi as Gauri (1968), 59

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Moondru Mudichu (1976), and Naan Vazhavaippen (1979). In most of these movies, women with disabilities have been projected as characters experiencing disability as retribution for sins, dependency, liability (unmarriageable), helplessness of the family members, objects of exploitation etc. Another movie that deserves a separate mention is the Malayalam film Athmakatha (2010) for two diverse reasons. While on one hand, it fails to adequately portray the independent life that can be led by a visually challenged person beyond the stereotyped profession (herein a candle maker), on the other hand, it portrays the protagonist of the movie Kochubaby (Sreenivasan) and his daughter, Lily, who later loses her eyesight, to be in complete acceptance of their disability without any repentance or negativity. It portrays a father’s concern over his daughter’s loss of sight but also talks about positivism through the life of visually impaired Kochubaby, who guides his daughter in accepting her visual loss. This is effectively showcased in the last scene of the movie, where one sees Lily, after losing her sight, completely laughs at it and says that she is not afraid of blindness anymore. Addressing the issue of disability being a life unworthy of living has been well portrayed in the film Naan Kadavul (2009), highlighting the pathos that people with disabilities are made to experience.  It introduces us to the world of begging mafia controlling physically and mentally challenged beggars and orients us to a distressing end where the female protagonist of the film Hamsavalli, a visually challenged girl pleads with the male protagonist Rudran to sacrifice her, thus freeing her from her miserly earthly life and granting moksha so that she never has to be born again. All these films to a great extent elaborate on debatable issues centring on the normate and the non-normate wherein the body is used as an artefact to portray social incompatibility, There are movies that have portrayed another dimension based on the charity model relating to virtuous and pious service rendered by the able bodied as the root cause for the resultant recovery of the ‘disabled’ such as Paalum Palamum (1961), Saathi (1968; Hindi), Khilona (1970; Hindi). The 1990s also witnessed an influx of inclusive-based films even in regional movies. The much-acclaimed Tamil film Anjali (1990), later remade in Hindi, still continues to provide a realistic view of the disability. Among films (regional) that have opened up the forum for the popular culture to embrace a more realistic public discourse of disability are Peranbu (2018) (Tamil), which reflects the problems experienced by a single father with a daughter with cerebral palsy, and Oppam (2016) (Malayalam), which showcases the struggles of a man with visual impairment to defend the daughter of his employer.

Discrimination and Cinema Labelling someone with a condition and stereotyping people with that condition, creating a division—a superior group and a devalued group may 60

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result in the loss of status in the community leading to discrimination against someone on the basis of their label. Apart from this some illnesses remain on the social fringe ignored, mocked, disrespected and discredited. Often the language used in these emotive films creates a mood of sentimentality which is both patronizing and offensive to people with disabilities. Although derogatory terms like ‘cripple’ or ‘dummies’ may not be used, the inclusion of depersonalized expressions such as ‘the disabled’ and ‘the handicapped’ phrases can cause offence, depriving people with disabilities of their humanity and reducing them to mere objects. Usage of negative, disablist language devalues people with disabilities and can create a negative self-image. Haller et al. (2006: 62) rightly confirms this as ‘Even something as mundane as the words used to refer to a group are important because they have ramifications both for the self-perception of people with disabilities and what the general public believes about disability’. Film-makers have often constructed characters outside the mainstream as ‘others’ and imbued them with symbolic significance. Hence what the media lacks most glaringly is the imagery of disability without an explicit focus on the disability itself. This has resulted in inaccurate portrayals of people with disabilities. The person with disability is often projected as a curio, as super cripple, as an object of ridicule, as a burden, or as sexually abnormal. This in turn dilutes the humanity of people with disabilities by reducing them to objects of curiosity. Shakespeare (1999) presents a potential reason behind the use of one of these stereotypes: The use of disability as character trait, plot device, or as atmosphere is a lazy short-cut. These representations are not accurate or fair reflections of the actual experience of people with disabilities. Such stereotypes reinforce negative attitudes towards people with disabilities, and ignorance about the nature of disability. Social observers and media commentators have always argued about the lack of realistic representation of disability in Indian movies. With only a few exceptions, the film-makers have lacked the gumption to tackle the intricacies in the lives of people leading a physically or mentally maimed existence. One is able to find the pure standard’s punitive view of disability in Indian cinema rooted in multiple sources of mythology and folklore. Joyojeet Pal in his essay, ‘Physical Disability and Indian Cinema’ observed that much of the representation of disability on screen had its roots in the cultural practices and sacred texts like the Mahabharata, the Ramayana, and the Upanishads. Pal (2013) identified four prominent patterns of disability representation— disability as punitive, disability as dependence, disability as disequilibrium and disability as maladjustment. Rather, unfortunately, the entire ordeal plagues the whole perceptive principle based on the greater idea that disability is not solely related to individuals’ sins in the current birth but it can also be ‘deservedly’ acquired at birth. This is reflected in the characters of Ashtavakra (eight deformities) who earned his disability due to a curse cast when in the fetal stage and Ajamukhi who earned her fate as a goat-faced 61

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woman due to her sins as a lustful beauty. This very notion seems to perpetuate the very perception of disability as an outcome of transferred punishment in Indian cinema. It marks the moral standards of identifying the righteous of being disabled for the sins of evil. Disability is most commonly characterized in terms of dependence—particularly in those films where a character with disability is not the lead player like in Dosti or Koshish. Such characterizations include the parent with disability, who depends on the goodness of their others to survive, such as their children (Avtaar, 1983; Allah Rakkha, 1985; Jaydaad, 1989; Zordaar, 1996), daughters (Apradhi, 1947; Biradri, 1966; Dil Tera Diwana, 1962; Sharaabi, 1984), romantic interests (Barsaat Ki Ek Raat, 1983) or siblings (Payal, 1957, Apne Dushman, 1975, Bhrashtachar, 1989). The crippled have always been barricaded to the periphery whether as the character of ‘Kachara’ (garbage) in the Oscar-nominated Lagaan or Langra Tygai in Omkara(2006). Gravely unfortunate we rarely find the splash of realism, as Hollywood churns out at regular intervals in films like Rain Man, My Left Foot, Born on the Fourth of July and A Beautiful Mind. In the Indian scenario once in a while, a sensitive director like Gulzar wakes up to make a touching Koshish (1972) or Sai Paranjpe makes a poignant Sparsh(1984). These two movies have portrayed the life of people with disabilities realistically with varying degrees of success. They made an attempt to address the complexes embedded in the minds of the disabled as well as the able bodied with an unsentimental equilibrium. Indeed, some organizations believe that Bollywood needs to do more. As a protest about the portrayal of a character with a speech impediment in the film Golmaal 3, The Indian Stammering Association had organized a petition specifying that though there has been some change in the industry, ‘a character in the film with a speech impediment was made fun of’. This is in agreement with Harnett (2000: 21), who stated that often films are ‘Used not for their complexity as people but for their easily identifiable impairment which is exploited by scriptwriters for dramatic effect, for emotional appeal or for blatant symbolism’. The list of movies portraying characters with disabilities is rampant, with much of them catering to the popular culture by churning out entertainment movies such as Tom, Dick and Harry (2006) (two sequels in 2009 and 2020),  Krazzy 4 (2008), Housefull 3 (2016) (peppered with derogatory comments about wheelchair users), Zero (2018) etc. They had reduced the representation to mere ridicule. The punishment for departures from the social norm, especially for female characters, can often be some form of disfigurement. Disability and disfigurement as sexual punishment are represented as the idea of the opposite—a ‘perfect body’—as the trope of desirability. Women with disabilities have also been shown to ‘almost never attain economic self-sufficiency’ in most of the movies unlike as in the Hollywood 62

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film The Miracle Worker, which was based on Helen Keller’s life, or in Children of a Lesser God, where the deaf-mute heroine learns to convey her thoughts. The above examples are very much in compliance with what Deborah Kent had described as If … a man finds a disabled woman attractive it is because her disability draws him to her, making her mysterious, heroic or appealingly vulnerable….The disabled woman is often seen from the outset as a victim…Her Disability may stand for helplessness, innocence or blighted opportunity. (Women and Disability: 15) Under such a paradigm disabled women can never be average, independent or even an underachiever. The traumas centring on the depiction of women with disabilities will be discussed in detail in the subsequent section.

Impact of the ‘Gaze’ A film has a distinctive language of its own. This makes it possible for us to follow the labyrinthine plots, feel for the most improbable characters and continue to believe that their world exists even if the film has come to an end. This is the very characteristic of filmmaking that’s puts additional responsibilities on it. It is imperative for the film-maker to be deliberately mindful of the structures and conventions that permit films to communicate effectively to the mass audience, be conscious of how this language works, how the screen communicates to people and affects their emotions. Film-makers have the biggest canvas and the fullest point imaginable. Usage of negative, disablist language devalues people with disabilities and can create negative self-image. Haller et al. (2006: 62) rightly confirms this as ‘Even something as mundane as the words used to refer to a group are important because they have ramifications both for the self-perception of people with disabilities and what the general public believes about disability’. Hence both the structuralist and the post structuralist approach emphasize that there is the need to recognize new ways to look at a film and this in turn can play a significant role in demystifying the film text as well as manner in which it represents certain social groups. Film-makers have often constructed characters outside the mainstream as ‘others’ and imbued them with symbolic significance. Hence what the media lacks most glaringly is the imagery of disability without an explicit focus on the disability itself. This has resulted in inaccurate portrayals of people with disabilities. The Disabled Person is often projected as a Curio, as Super Cripple, as an Object of Ridicule, as Burden, or as Sexually Abnormal. This in turn dilutes the humanity of disabled people by reducing them to objects 63

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of curiosity. Shakespeare (1999) presents a potential reason behind the use of one of these stereotypes: The use of disability as character trait, plot device, or as atmosphere is a lazy short-cut. These representations are not accurate or fair reflections of the actual experience of disabled people. Such stereotypes reinforce negative attitudes towards disabled people, and ignorance about the nature of disability. Apart from the aforementioned exploitations and misrepresentations people with disabilities are conspicuous by their absence from mainstream popular culture. It is clear that disabled people are under-represented in employment within the media industry. There is a shortage of programme-makers, actors and writers etc. This is, however, not based on the presumption that people with disabilities do not desire to work within the industry but because they are struggling to be employed. One of the major argument that evolves as a critic of the representation of people with disabilities is that the media actually considers the ‘perfect body’ as the bench mark. Such an approach tends to have two repercussions. On one hand, such a stereotypical delineation of the image of differently abled people make the non-disabled feel magnanimous about their acts of charity and extension of their helping hands to those with physical challenges. Due to limited mobility, lack of entertainment facilities and easy access, people with disabilities are heavy consumers of T.V. programmes and movies. Newspapers, magazines and Internet are also within the easy reach out people with cognitive, physical and sensory impairments. All that is shown and described has a great impact not only on certain individuals but also on society as a whole. The social comparative theories state that individuals always tend to compare themselves with the persons in media. This is also in congruence with the postmodernist perspective later applied to the study of disability as an attempt to develop radical sociology of impairment. Postmodernists like Foucault (1973) attempted to study the power exercised by ‘normal’ people over people with disabilities. Modernity according to them had a pervasive capacity to produce strangers. The limits of tolerance and conformity provided the basis for constructing the aspects of strangeness, while modernity lends support to homogenize and annihilate the differences it invariably produces. According to Foucault (1973) the stranger produced results due to categorization and normalization of the propensities of knowledge. For him, the ‘gaze’ manifests itself more in institutional forms of domination and regulation rather than the oppressiveness of intracorporal relationships. Selfsurveillance by which people develop an awareness of how they are through the gaze of others and then modify their behaviour affects both disabled and non-disabled people. Under such circumstances people with disabilities are 64

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subjected to oppression wherein they internalize the prejudices and assumptions held by their non-disabled counterparts. In this relation, ‘normal’ people use the power of fixing which Sartre (1958) referred to as ‘gaze’ on the disabled people for not conforming to what they consider ‘valid’ behaviour. The aspect of staring/gaze was lent further support by Rosmarie-Garland Thomson’s observations that ‘Anyone with a visible disability knows, being looked at is one of the universal social experiences of being disabled …. The dominant mode of looking at disability in this culture is staring’. She specifies that staring does not only entail simply looking at or being looked at but rather ‘staring is an intense form of looking that enacts a relationship of spectator and spectacle between two people’ and thereby ‘manifests the power relations between the subject positions of disabled and able-bodied’. She further elaborated on this that ‘Constitut(ing) the starrer as normal and the object of the stare as different, it creates disability as a state of absolute difference, rather than as simply one more variation in human form’. However ‘as many starers gawk with abandon as’ the nonstandard body parts that are made to signify ‘disability’, modern culture considers staring as ‘rude’, a form of inappropriate looking. As a result ‘the disabled body thus becomes a visual paradox: it is at once-to-be-looked-at and not-to-belooked-at’ (346–348). This is also in conjunction with the Interactionist perspective of the social approach to disability. The role of ‘significant others’ which Scott (1969) referred to as ‘those people who have the greatest influence on an individual’s evaluation of himself and who have the greatest impact on his acceptance and rejection of social norms’, facilitates the manner in which people with disabilities give shape to their ‘self’. Further support to the role of significant others in the formation of an identity of self was provided by Cooley (1902) and Mead (1934). Cooley (1902) maintained that an individual develops his conception of the self by way of imagining what others think of him as in case of the a ‘looking glass’ process. Later expanding upon Cooley’s looking-glass self, Mead (1934) held that self-concept arises in through social interaction as an outgrowth of an individual’s concern about others’ reaction to him or her. The need to anticipate others’ reaction can cause an individual to behave accordingly thereby perceiving the world as the ‘others’. Hence Mead (1934) also emphasized the aspect of the self being social and held that an individual comes to know about himself or herself by role-playing. A comprehensive interpretation of representations in cinema that evaluates the strength of the patriarchal order and its alignment of power within gender roles, emerges when we apply a feminist approach to commercial Indian cinema (Jain and Rai, 2002). The embedded discourse of masculinity within mainstream cinema asserts itself through normative imaging of the male body (tall, handsome etc.) with the woman whining under the fetters of subjugation on being projected as the submissive, self-sacrificing woman, 65

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whether in her role as girlfriend, wife or mother. An Indianized version of I am Sam, Main Aisa Hi Hoon directed by Harry Baweja is a film defending the rights of an autistic father who explicitly uses the word ‘autism’. In its attempt to motivate viewers to reject conservative and aggressive patriarchal mindsets that often find expression through authoritative discourses, it upholds the patriarchal powers of family. Lens view of the three prominent adult women in the film—Maya, Ritu didi and Nidhi Khanna reflects the denial of both voice and space to women. Moreover, the initiative of Nidhi Khanna portraying the role of a lawyer to marry the autistic father to rationalize her status as one of the ‘normal’ parents furthers captivates the female character under the masculinity norms. This has been comprehensively summed up by Sudha Rai as the understanding of disability is being trapped within the patriarchal institution of family and marriage, overriding other areas of the agency where women have proved themselves capable of working out more modern choices, reforming conservative attitudes to disability that are often marked by a ‘passive’ sentimentality. Issues of sex and romance seem to further separate Bollywood’s representation of men and women. In almost all the disability based films, men have been portrayed as being loved by able-bodied women in either implicit or explicit sexual ways. Keeping the gender bias alive a disabled male is presented as a ‘perfect person’ or sometimes a ‘superman’, sitting on a wheelchair or walking with a cane. He is extremely handsome with whom even the most beautiful lady madly falls in love, for instance, Sophia, the caretaker of Ethen Mascarhanas in Guzaarish. On the other hand unfortunately, women with disabilities are rarely loved by men without disabilities. In rare cases, as in the film Mann, the man loved the woman even after the onset of the disability. Women have either been regarded as replaceable objects or an object of pity. This was evident in Chirag (1969) wherein Asha Chibber (Asha Parekh) after losing her eyesight due to an accident after marriage is deserted by her in-laws for being dependent on her husband. Even if a disabled female is shown getting married to a ‘normal’ man, such as Meenu (Vidya Balan) marries Shyam Saxena (Madhavan) in the movie Guru, it is only showcased as a ‘social reform movement’. He remains her ‘nurse’ and caretaker till she dies rather than a husband to her. The list of such examples remains unending. Also, women with disabilities have been shown to ‘almost never attain economic self-sufficiency’ in most of the movies unlike as in the Hollywood film The Miracle Worker, which was based on Helen Keller’s life, or in Children of a Lesser God, where the deaf-mute heroine learns to convey her thoughts. Under such a paradigm disabled women can never be average, independent or even an underachiever. Besides endorsing the concept of ‘ability’ itself as a normative discourse of masculinity, construction of the image of people with disabilities at the discourse level of an ‘other’, who is certified a mad person further ridicule 66

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their condition. Often characterized through overt statement people with disabilities are conveniently summed up under this discourse of madness as mad persons—pagal that poses a serious threat to their stable social order. Representations in films such as Koi Mil Gaya or Tera Mera Saath Rahen show up consistent patterns of such discourses. In Koi Mil Gaya the heroine of the film professing to the lead character her desire for ‘a physically and mentally strong partner’ obliterates the efforts of the latter to prove his abilities. However, it is imperative to keep in view that although films like Koshish, Khamoshi, etc., well depicts the communication skills of the deaf and sensitizes the public towards understanding deaf people, at the same time it is very important for normal people to know lip reading/sign language before communication can be built up between the hearing and the hearing impaired. Failure to do so can result in a communication gap which is likely to sustain between the two. Moreover, films also need to emphasize the rehabilitation of people with disabilities educationally, vocationally, economically and socially. Besides the nature, the focus of most of the programmes was found to be limited to specific forms of disabilities such as mental illness, drug addiction, emotional disturbance, etc., while severe physical disabilities failed to acquire adequate attention. Apart from the depiction of people with disabilities by the media, the use of stigmatizing language and metaphors by medical professionals was also found to have a negative connotation for the disabled population (Peters, 1996; Cameron and Swain, 1999). Commenting on the usage of labels, Bogdan and Taylor (1982) maintained that labels create barriers in understanding handicapped individuals by encouraging the non-handicapped people to define them in terms of a single dimension, which in turn is used to generalize about the labelled person’s character and ability. The process of labelling as applicable in the field of education of students with disabilities was found to have had little functional value other than giving a global indication of their educational placement. This in turn proved to be more detrimental by limiting the approach of providing them education in the least restrictive environment. It is significant to be careful of these aspects in today’s world wherein there has been a complete departure of filmmaking from the traditional approach of the focus being on the content of the film. Under such an approach the chronological progression of the narrative was regarded to be more significant rather than how the narrative has been ‘put’ together. Under such circumstances, it becomes essential to undertake a structural analysis of the films which enables a person to delve into the issue and go much beyond the stereotypical viewpoint. It also enables one to look at films as more complex texts engulfing within itself layers of meanings and interpretations reflecting diverse aspects of a particular group.

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It is a fact that ‘disability films’ have become a significant niche controversial genre over the years. It has often been alleged of being exploitative and manipulative. It has now become a common trend among certain directors to make movies since it gives them and their film an unfair advantage at award shows by giving the actor an unjustifiable means to demonstrate his talent and at the same time bequeathing the film with a kind of moral aureole. The media throughout history has depicted disability through the use of impairment, whereas Shakespeare (1999: 164) points out in his article about disability in films ‘impairment is made the most important thing’ and disabled characters are ‘objectified and distanced from the audience’. The media has focused on portraying impairment through the influence of the medical model of disability, where disabled people’s inability to interact in normal daily life is a direct result of their physical and/or mental impairment. It goes without saying that the mass media, including newspapers, magazines, television, radio, films and the Internet, play wide roles in forming and moulding public opinion on various issues. In this context, Markandey Katju, chairman of the Press Council of India, criticized the Indian media, saying, The media is not justified in giving 90 per cent of its coverage to entertainment, leaving only 10 per cent to real issues which are basically socio-economic in nature. Doubtless, the media should provide some entertainment. But, the thrust of its coverage should be in public interest. The media covers the disabled on notified days like the International Day of Disabled Persons, but sadly, the issues pertaining to disability get hardly any media attention for the rest of the year. Mainstream media have their own limitations to cover issues of disability, and whatever coverage there is, it is skewed in nature. The media focuses on individuals who are physically or mentally challenged and portrays them as either heroes or victims. In addition, whenever there is coverage, it is stereotyped. The media has been found to be callous, biased and manipulative in addressing the issue of disability. However, a few films like Barfi, My Name is Khan and Taare Zameen Par have justified the characters of the disabled and attempted to secure their human rights. Since the media has a social responsibility, it should not only disseminate information to the public but should also critically analyze issues and sort out them out. The media in its all forms should focus on certain issues like inclusive development, accessibility and social security. The Ministry of Information and Broadcasting (I&B) should chalk out the modalities of coverage of disability in consultation with social activists and organizations working for the cause of the disabled.

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The Central Board of Film Certification (CBFC) and the Indian Newspaper Society (INS) should be conscious of the issue of representation of disability in film and print media respectively. The coverage should be practical and inspire differently abled persons to widen their own horizons. There should be an uniform editorial policy for all English, Hindi and regional newspapers in India in order to avoid lapses in reporting on and representing disability. There should be a people’s movement to endorse the ideas of activists working for the persons with disabilities.

Conclusion Film images are never vague; they are stubbornly ‘concrete’. Film is an art of visual abbreviation and no art of communication is effective unless it takes into account how the recipient will receive it. Moreover, as films are not created in a vacuum as they emerge from a cinematic tradition, they are produced within a social context which thoroughly informs both the film and its reception. When it comes to dealing with sensitive subjects like social injustice, disability or women’s issues, Indian movies seem to go overboard with larger than life portrayals—barring a few exceptions. It is important to ponder over certain important questions like Why can’t such topics be dealt with more realistically? Is the Indian audience not ready to accept films about ‘serious’ issues? With producers willing to risk their money and actors ready to experiment with different roles, some offbeat movies are being made by creative directors these days. Viewers expect entertainment worth their money and when social issues are woven in with an interesting plot, the movie manages to retain the audience’s interest and gain acceptance. Therein also it is imperative to bear in mind that what distinguishes the film is not so much of its presentation of well-known social differences but how it investigates those differences through the powerful metamorphic significance of its title and through the coincidental overlapping of the story within the film.

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Categorization and Discrimination: Children’s Literature Society constructs disability as a stigma, defined as an ‘attribute that is deeply discrediting’ (Goffman, 1963: 3). Stereotypes are qualities viewed as attributes of social groups (Stangor, 2009) that are shared within a society or culture and tend to continue over time even when evidence demonstrates inaccuracies (Kashima et al., 2008). Media portrayals and images (Ablon, 1995), identification and labelling in schools (Algozzine et al., 1983), language that focuses labels (Danforth and Navarro, 2001), and social institutions (Meekosha, 2004) all work to establish disability as an authentic category instead of a collective creation. Since the development of stereotypes by adults and children may be completely unconnected to the observable qualities or actions of individuals or groups (Bigler and Liben, 2006), stereotypes are not merely methods to process information quickly formed through necessity and by examination of others. As a societal construct, stereotypes become a method of control and perpetuation of power (Smith, 1999). Social identity theory (Tajifel and Turner, 1979) emphasizes justification of the position held by a powerful group in society through negatively stereotypic views of devalued groups. The treatment of disability in the nineteenth- and early twentieth-century childrens’ literature is in fact more complex than it appears at the outset. Although disability was indeed sometimes seen, like all misfortunes and hardships, as providing spiritual discipline, disabled characters were not always completely transformed into stereotypical ‘saintly invalids’. This may be due to variations across time and place, or even the bearing of the personalities and the direct or vicarious experience of disability of the writers themselves. Historically, literature has portrayed disability in an extremely negative light wherein stereotypes abound in stories, from villains with physical disabilities in Grimm fairytales, Lenny as an intellectually impaired menace in Of Mice and Men (Steinbeck, 1937), pitiful Billy in Jo’s Boys (Alcott, 1886), and into the present-day portrayal of Dudley as fat, stupid, and aggressive 70

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in Harry Potter and the Sorcerer’s Stone (Rowling, 1999). In the words of Thurer (1980: 12), ‘the disabled have had a bad literary press’. A significant question that arises here is then why such a broad array of novels featuring the mentally impaired and other forms of disabilities have proved so popular in the English curriculum? An in-depth study surely will reveal that these novels despite exploring issues of social isolation, alienation and crisis, are highly teachable, symbolically quite sombre and pessimistic in their approach. In fact one can clearly state that these characters serve as allegorical representations of disability in general. A closer look into the texts that form an essential component of English teaching at the Middle and High School levels shows perhaps surprising propensity for literature that features the intellectually and/or developmentally impaired characters. One can confront a plethora of content ranging from Of Mice and Men , Carson McCuller’s classic novel, The Heart is a Lonely Hunter, featuring a deaf-mute who is also described as imbecilic, Boo Radley, the mysterious shut-in in Harper Lee’s To Kill a Mockingbird and Flowers for Algernon  by Daniel Keyes featuring a mentally retarded man who, due to miraculous medical treatment, is temporarily enhanced to a genius-level intellect to Ken Kesey’s One Flew Over the Cuckoo’s Nest being narrated by an American Indian man who is feigning near-catatonic stupidity, Fyodor Dostoevsky’s The Idiot, Graham Greene’s A Burnt-Out Case, and William Faulkner’s The Sound and the Fury which also feature mentally and physically challenged characters in central roles. Biklen (1981) identified six common stereotypes of persons with disabilities in literature: menacing, extraordinary, incompetent, child-like, victimized, and ‘outsider and interesting scenery’ (p.6). These stereotypes mirror six conceptions on which historic institutional models were based regarding persons with cognitive disabilities: sick person, subhuman organism, object of pity, burden of charity, and holy innocent (Wolfensberger, 1969). If literature is a resource for society to transmit values (Trautman, 1978), then the message transmitted by most literature for children has been of fear, pity, and to isolate individuals with disabilities (Bowe, 1978; Margolis and Shapiro, 1987). Kate Agnew and Juliet Partridge’s The Cambridge Guide to Children’s Books in English (2001) describes the protagonists being ‘imprisoned’ in their wheelchairs, ‘wheelchair-bound’ and ‘crippled’ thus completely overlooking the affirmative language preferred by the persons with disabilities. Linguists such as Gee (1999) explain that we bring understanding to words according to our own experiences and expectations, which are themselves mediated by our own cultural norms. Hence it is the responsibility of disability scholars to use deeper and more focused insights to help themselves understand ‘disability’ as a social construction as evident in texts in and through the attitudes of both characters with and without disabilities, the rationale of plots which both create and consolidate the attitudes and 71

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circumstances that are commonly found in contemporary society and not as a personalized, wholly biological and medically mediated characteristic. This glaringly points out to the fact that some scholars may not be fully conversant with the radical changes which have occurred in children’s literature over recent decades and the potency of children’s texts as agents for creating perspectives and hence fails to justifiably reflect the cultural attitudes. In response to this Meek (1988) urges adults to ‘Read (picture books) with your most adult awareness of life and literature and text, and you will see that the invitations they offer to young readers are far from infantile’ (p. 19). The classics of nineteenth-century and early twentieth-century childrens’ fiction contain many characters with disabilities: for example, Clara in Johanna Spyri’s Heidi  (1872); Katy and Cousin Helen in Susan Coolidge’s What Katy Did (1872), Colin in Frances Hodgson Burnett’s The Secret Garden (1911); Pollyanna in Eleanor Porter’s Pollyanna (1911). It is a common subject that people with disabilities are often depicted as vile, scheming and demented characters in various works of fiction. The ominous figures of Long John Silver, the one-legged pirate, and Blind Pew, his sightless shipmate, neatly conflating wicked deeds with missing body parts occupies an ambiguous role as Silver is portrayed as temperate and thrifty in Treasure Island, by Robert Louis Stevenson (1883). Captain Hook, a character in J. M. Barrie’s Peter Pan, has been described as ‘cadaverous’ and ‘blackavised’, with blue eyes and long dark curls resembling ‘black candles’. Hook has been characterized as being callous and bloodthirsty. Quasimodo another fictional character and protagonist in the novel The Hunchback of Notre-Dame (1831) by Victor Hugo was portrayed as born with a hunchback and feared by the townspeople as a sort of monster, but he finds sanctuary in an unlikely love that is fulfilled only in death. The deformed Quasimodo is described as ‘hideous’ and a ‘creation of the devil’ hated for his deformity. On the other hand another popular emotion attached to disabled characters is that of sympathy. Lord of the Flies, by William Golding holds good as an example of being a novel about ‘othering’ and boundaries wherein three children are picked off by the others for having impairments or physical or mental vulnerabilities, i.e., ‘Little’un’, has a facial disfigurement, Simon who has fainting spells and whose mental health deteriorates on the island and Piggy who had asthma and was teased by the others for his obesity and short-sightedness. Besides this ‘Mad-Eye’ Moody in J. K. Rowling’s Harry Potter series, Quasimodo in Victor Hugo’s The Hunchback of Notre Dame, Tiny Tim in Charles Dickens’ A Christmas Carol and Rochester near the end of Charlotte Bronte’s Jane Eyre also manages gathering people’s sympathetic approach. Moody exhibits an appealing swagger despite all the injuries his body has absorbed over the years. Tiny Tim, of course, is an invalid kid with an upbeat attitude. Almost everyone feels Quasimodo looks hideous, yet—partly because of this character’s (unrequited) love for 72

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Esmeralda—he’s capable of acting in a noble way. The event that causes Rochester’s disabilities softens his somewhat arrogant nature and helps bring Bronte’s iconic novel to its moving conclusion. Some permanently characters with disabilities in the nineteenth-  and early twentieth-century children’s books are ‘saintly invalids’, whose chief role seems to be to set an example for others. Examples include Carol in Wiggin’s  The Birds’ Christmas Carol  (1891), Dick in Alcott’s  Little Men (1871), and Lucinda Snow, whose story is told as an inspiration to Jill in Alcott’s Jack and Jill (1879). A common trend that was evident among the authors of the nineteenth century was that one should submit to misfortunes, both as a form of obedience to God’s will, and intended for their own good. Instances of such arguments were quite evident in Burnett’s The Secret Garden (1911), Lois Keith’s, Take Up Thy Bed and Walk (2001), What Katy Did (1872) and Alcott’s Jack and Jill (1879). In the Secret Garden, the character of Colin was convinced by servants and a doctor that he is destined to be a hunchback like his father and to die young and was made to spend his entire childhood indoors, healthy friendships with Mary and Dickon, exposure to the healing effects of nature and the outdoors accounted for making Colin feel healthy and cured. Hence Colin’s illness is represented to the readers as hysterical rather than physical causes. On the other hand the viewpoint that spiritual discipline can be a means for cure of disability finds support in Lois Keith’s, Take Up Thy Bed and Walk (2001) wherein as a result of recklessness or disobedience one experiences injury and suffering and relative immobility acts as the only means to acquire discipline. One can see this through the character of Cousin Helen in What Katy Did (1872), who becomes permanently disabled by an accident some years earlier, communicates to Katy that God has allowed her (like Helen herself) to study in the ‘School of Pain’, where she can learn lessons in ‘Patience’ and ‘Making the Best of Things’, and become the ‘Heart of the House’. One among the several works reflecting the direct or vicarious experience of disability of the writers themselves is Treasure Island, by Robert Louis Stevenson (1883). The writer’s own personal experience of disability perhaps accounted for one of the reasons for the several characters with disability in the book. This is evident through the characters of the sinister figures of Long John Silver, the one-legged pirate, and Blind Pew, his sightless shipmate, neatly conflating wicked deeds while Long John Silver is equally ambiguous being portrayed as temperate, thrifty and Bible-fearing. Captain James Hook, the  antagonist  of  J. M. Barrie’s play  Peter Pan or the Boy Who Wouldn’t Grow Up has been described as ‘cadaverous’ and ‘blackavised’, with blue eyes and long dark curls resembling ‘black candles’. An  iron hook  replaced his severed hand, which gave the pirate his name. He is represented as a character that is revengeful. Hook seeks 73

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revenge on Peter Pan for having fed the crocodile his left hand and refuses to leave Neverland prior to this revenge. There are still so many books that portray characters with disabilities and chronic illnesses as deeply destructive and certainly have a detrimental impact on the understanding of disability in general. However, the possibility for such could be that either these books are/were clearly written by authors who have been ignorant about their portrayal or that they fail to respect experiences of persons with disabilities. As we shift gradually to adolescent literature and culture one can find new sets of dynamics at work. In most of the novels or contemporary adolescent texts about disability, characters with physical disabilities are being humanized in order to destabilize ideas of ‘normality’, which is politically empowering. The texts exemplify the imperative need to understand disability as an identity category, celebrate difference and inclusivity, and make strong arguments for accommodation. However, at the same time many of the narratives struggle to permit normalization, pride and empowerment for people with intellectual disabilities by explicitly valuing and emphasizing intelligence and by consistently marginalizing them. The treatment of intellectual disability in contemporary adolescent novels found representation in Terry Trueman’s Stuck in Neutral (2000), Louis Sachar’s Small Steps (2006) and Harriet McBryde Johnson’s Accidents of Nature (2006). However, a closer look at some of the fictional literature for the youth does indicate a silver lining. For instance, Freak the Mighty (1993) by Rodman Philbrick very skillfully explores and highlights the friendship between Max, the narrator who is a teenager with learning disability and Kevin, a boy in his grade whose is a genius and walks with the help of crutches. Their friendship reflects total acceptance and can serve as an example to teach children with disabilities to focus on their strengths instead of letting their weaknesses define them and also their non-disabled counterparts to respect their individuality. Similarly, Hurt Go Happy (2006)  by Ginny Rorby traverses diverse emotions of a parent’s fear of losing her daughter to the world of deaf culture, stigma, and highlights the issue of love transcending boundaries and even between species. The story revolves around Joey Willis, a teenager who has been deaf since she was 6 years. She communicates through lip reading as her mom refuses to let her learn sign language. Later Joey meets Dr Charles Mansell and his pet chimpanzee, Sukari, who communicates through sign language and the story unfolds in Joey’s fight for her independence and Sukari’s freedom. It helps to unearth a realistic picture of Joey’s emotions and experiences.

Disability and Children’s Literature: India With reference to the Indian context, it will be quite unfair to say that attempts have not been made to sensitize children and youth about people 74

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with disabilities through children’s literature though primarily fictional. It is significant to note here that the uniqueness lies not only in the efforts by authors but also the enthusiasm among some of the publishers in undertaking such projects. It is certainly more lucrative and promising undertaking a publication that generally procures greater readers hence a saleable market and greater revenue. There has been a progressive change in the mindset of people to focus their attention on significant social issues and hence its impact on children literature engaging in discourses on disability. Against All Odds by Ramendra Kumar focuses on the main character Karthik who depicts resilience in overcoming the challenges that emanate from societal attitudes that categorized him as a social outcast due to his physical disability (one arm). The story is set in the backdrop of a school in Kolkata and traverses various facets of childhood, including friendships and favourites as well as other hardships. Another book that holds attention is A Walk with Thambi by Lavanya Karthik (2019) which skillfully highlights difficulties focusing on accessibility issues of visually challenged children and makes a positive impact on creating awareness among children regarding the use of mobility aids. Bhavna Menon’s (2020) Welcome to the Forest provides a vivid picture of how a visually challenged girl, Tulsa experiences the world through the tale of her visit to the Kanha Tiger Reserve with her school friends. This exposes Tulsa to a wide gamut of sensory experiences beyond the visual one. Zal Whitaker in Kanna Panna (2015) through the portrayal of Kanna’s life and struggles not only skillfully highlights the difficulties experienced by a blind person but also does much to break the stereotypes that people with disabilities cannot have fun. Similarly, Harshika Udassi’s Kittu’s Very Mad Day (2018) also attempts to break stereotypes through the story about the protagonist Kittu, a ten-year-old boy who walks with crutches, fierce and talkative who, while on a vacation with his crazy, big family, gets lost. It is more so noticeable as it makes no attempt to project disability into an awkward conversation, but delivers it as just another story, a pleasingly mad tale about thinking on your feet (in this case foot) to find one’s way out of problems and forming friends. Wings to Fly (2015) written by Sowmya Rajendran, a biography of the differently abled sportsperson Malathi Holla creates and leaves lasting visual imprints of Malathi’s journey, her determination and untiring spirit in the mind of a young reader. Manya Learns to Roar (2019a) by Shruthi Rao centres round a little girl Manya’s dream of playing Shere Khan in her school play. The book enables its readers to clearly understand Manya’s innermost desires but also the emotional trauma that she experiences due to her friends, her teacher and Principal not having faith in her and the impact that it has on her speech (stammering). The story advocates the need for a strong support system to help the child become confident. On similar lines, Vibhuti Cat  (2018) by 75

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Shikhandin introduces us to the life of Magesh, a boy who has difficulty in communication through words, his interaction with his family especially his cat and friend Vignesh. It skillfully illustrates Magesh’s difficulty in dealing with certain emotions and how he sets off on the path to personal growth armed with his love for art and a loving family. The story also shows how a gentle, understanding and supportive family can go a long way in helping a child achieve his optimum best. Leela Gaur Bromme’s Flute in the Forest (2010) also highlights through the protagonist a 13-year old Atiya, afflicted by polio captivating readers with a positive approach, the spirit of adventure and enthusiasm rather than focussing merely on disability and covers numerous aspects beautifully—love for nature, friendship, father–daughter relationships, and an unexpected trio forging a very special bond. Based on the real-life experiences of the author the story portrays a more realistic depiction of the experiences associated with disability rather than merely the stereotypical attributes. Zainab Sulaiman’s book Simply Nanju (2016) is about ten-year-old Nanjegowda, fondly known as  Nanju  along with a bunch of other kids. Nanju was born with a spinal defect and as a result, he is relentlessly teased about his crooked walk. The book addresses the varied challenges that Nanju experiences in his school, where other children are also differently abled and highlights that differently abled doesn’t mean being different. Tharini Viswanath’s protagonist Nancy in the tale Catch that Cat! (2014), doesn’t let her being in a wheelchair stop her from helping a cat stranded on a tree thus showcasing confidence and non-aversion to exploring public spaces. At the same time the book sensitizes children regarding various issues experienced by individuals with physical disability in accessing public spaces. Lavanya Karthik’s Neel on Wheels (2012) beautifully illustrates the relationship among two brothers wherein the  story narrated by the younger brother relates how despite Neel using a wheelchair instils in him a feeling of security as he imagines that the wheelchair can transform and his elder brother can protect him from every danger. Such an approach helps to inculcate a sense of empathy in the minds of young readers towards differently abled people. In Big Bully and Me-Me (2015) by Arti Sonthalia, the author highlights the situation of not only the one being bullied (Krish) but also the bully (Ishaan). She beautifully weaves the two sensitive issues of stuttering and bullying among children propagating that a person who diificulty in speech (stammers) can also perform well if a suitable supportive system coexists. Among the many other books that address the emotional turmoil experienced by the differently abled children due to differences in treatment meted out to them and subjection to ‘being made fun of’ are Susie Will Not Speak (2019b) by Shruti Rao, Why are You Afraid to Hold my Hand? by Sheila Dhir which explores attitudes and how people react to someone who is differently abled.  Exploring the impact of labelling, Ken Spillman’s book 76

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Clumsy (2016) highlights the resulting psychological and emotional trauma of the chief protagonist of the book. The book challenges the usability of terms by adults with children such as clumsy, careless, slowcoach, butterfingers, messy, sloppy etc. Payal Dhar’s book A Helping Hand (2019) explores the sentiments and struggles of a young girl with a prosthetic hand being reduced to an object of curiosity and hence portrays the cruelty embedded within. At the same time, the story evolves to a dimension focusing on embracing differences and overcoming all difficulties. Nandhika Nambi’s Unbroken’s  (2017) protagonist, Akriti, who is confined to a wheelchair as a result of an accident, explores how life can change and besides the physical damage, it can result in intense emotional turmoil. The story weaves around Akriti’s hate for dependency of any kind on one hand and the aggressiveness personified in doing the things that she can do by herself. It attempts to reinstall the belief that one can reconnect to life again, to live with dignity, accept life for what it is and continue to be happy in spite of challenges. It is important that though efforts are being increasingly made by writers to address issues centring on disabilities, there is yet a dearth of books addressing autism, ADHD and intellectual disabilities such as dysgraphia or dyscalculia, dyslexia etc. It is imperative for more focused work to be done in these areas before we can fulfil the aspiration of attaining an inclusive society.

Rethinking Comics and Disability Some research studies have focussed on how comics as a communicating medium can engage themselves in objectification and marginalization of persons with disabilities, propagating stale stereotypes and stigmas while others have emphasized on how this medium can be effectively employed in transforming our understanding of disability. Squier focusing on alternative narrative graphics argued that ‘as a medium combining verbal and gestural expression, comics can convey the complex social impact of a physical or mental impairment as well as the body registers social and institutional constraints’ (p. 74). David Small’s graphic narrative Stitches: A Memoir (2009) casts a deep impact as a comic autobiography in addressing the medicalized body as well as the social norms and constraints of embodiment. In Stitches, Small engages in complex representations of his own body thus weaving the complex causal relationships among disease, disability and trauma. Small’s confrontation of the medical gaze of conforming to others’ gaze or ‘othering’, in the mirror, lays clear distinction between the exotic or deviant body and his own, whereby he begins to see himself as disabled, sick or afflicted. He describes his neck as ‘a crusted black track of stitches; my smooth young throat slashed and laced up like a bloody boot’. (p. 191) 77

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Dolmage and Jacobs (2012) in their essay Difficult Articulations: Comics Autobiography, Trauma, and Disability, argued that ‘as multimodal texts, comics […] allow for multiple modes of representation, while also providing, or at least potentially providing, the means to question the limitations of these modes’ (p. 14). They further argued that As readers engage with a comics text, they make sense of the multimodal elements (including the visual, the linguistic, the gestural, the audio, and the spatial) of each page or page spread, the arthrological connections between panels, and the multiple kinds of transtextual connections between this text and myriad other texts. (p. 15) In the recent text, Disability in Comic Books and Graphic Novels, Whalen, Foss and Gray (2016: 2) examined how representations of disability challenge and uphold stereotypes. They argue, ‘comic art is capable of both finely grained nuances and cartoonish broad strokes … the history of how disability has been represented therein is fraught with problematic tropes’. Studies have demonstrated the importance of realistic presentations of people with disabilities in materials for youth (Ayala, 1999; Dyches and Prater, 2005; Heim, 1994; Mellon, 1989; Mills, 2002; Riley, 2005). While studying how the emotional characteristics of comic book characters with physical disabilities were depicted, Weinberg and Santana (1978) were able to identify 63 ‘physically deformed’ (328) characters, each of which was found to be morally good or evil, not neutral after examining 40 superhero comic books to determine the characters’ physical conditions, moral stature, and group membership. Based on their findings they suggested, ‘that physical inferiority extends to moral inferiority with the physically deviant being portrayed as morally deviant’ (p. 330) since the underpinnings of such portrayal denoted that characters with physical disabilities needed to be exceptional to overcome the perceived barriers of physical disability. Mellon (1989) in an article advising school librarians on collection development issues of juvenile materials about individuals with disabilities, identified problematic depictions of disability in books for youth and argued that these depictions stem from the author’s focus on the disability rather than the character. Mellon stated that some of the authors defined each character by his or her level of ability rather than other characteristics and hence some stories relied more on the differences rather than similarities between children with and without disabilities. Mellon also uses the characterizations of ‘poor little thing’ and ‘brave little soul’ (p. 47) to describe those characters that are portrayed as having a disability that is an obstacle whereby the characters are defined by their disability and how hard they work to defeat it. In view of this Mellon suggested that authors need to 78

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portray the similarities as well as the differences in children of various ability levels and mentioned that: The best approach to disability in juvenile books is one in which aspects of the disability are revealed, not as the main focus of the book, but through the unfolding of the story. In this way, characters can be developed as people who happen to be disabled, just as they happen to have red hair, or happen to hate spinach, or happen to be quick-tempered. (p. 47) Based on depictions of cognitive disabilities in literature for youth, Heim (1994) suggested five criteria on which books should be evaluated for quality: accuracy of information, lack of stereotypes, literary quality, confronting the disability and not ‘using’ characters with disabilities. With a focus on the cultural and linguistic characteristics associated with disability, Ayala (1999) analyzed 59 picture books and books for intermediate readers published between 1974 and 1996 that featured a primary character who was identified as possessing a disability. Ayala’s examination of cultural and linguistic characterizations included the language of the book’s text, the ethnicity of the characters with disabilities, and any cultural emphasis communicated in the story. Ayala found that only a small number of the sampled books depicted non-white characters and were written in a language other than English, and mostly ‘placed little or no emphasis on specific cultural practices’ (p. 103). The author argued that if books written for youth are to accurately portray children’s lives, they must portray ethnically diverse children with disabilities. Those students without disabilities who can find and read realistic representations of disability are likely to learn more about issues that those with disabilities face in society, and all readers can discover similarities they may not have known they shared with others (Ayala, 1999). Mills (2002) claimed that authors’ ethical norms are often communicated in their writing by citing examples of how stories have communicated the notion that low intelligence and corrupt moral character go hand in hand. Mills also described the ways in which characters with disabilities are portrayed as inherently good only to suffer later because of their disability and highlighted how authors often attempt to communicate a sense of equality by portraying a character with a cognitive disability as having more compassion or more talent with tactile objects than the character’s peers without disabilities. Mills noted that it is important to understand how disability is portrayed in the media for youth because ‘books for children about mental disability inescapably convey values about how we should respond to difference in intelligence’ (p. 542). Based on content analysis of 34 children’s fiction books published between 1999 and 2003, Dyches and Prater (2005) reported that in most 79

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cases they depicted characters with developmental disabilities as having either autism spectrum disorder or mental retardation; the majority of the characters were male, and many held ethnically diverse backgrounds. The authors noted that many of the characters were shown as dynamic individuals who acted with agencies, whose primary relationships were with peers, and who were shown to be educated in an inclusive setting. The researchers acknowledged that the results indicated a positive trend concerning the depiction of characters with developmental disabilities compared to a similar study they conducted in 2001. As such, they further encouraged authors to portray characters as complex individuals whose actions have significant consequences for themselves and others, whose role is that of caretaker or protector, and who interact with others within the context of recreational activities Similarly Irwin and Moeller (2012), in their work Seeing Different: Portrayals of Young Adult Graphic Novels stated that 18 out of the 30 books listed on the New York Times Graphic Books Best Seller List in 2009 contained at least one character with a disability. The most frequent depiction of disability was classified as “atmosphere”, meaning in the background, for eleven characters while another eight characters were identified as evil, three characters were identified as pitiable, two characters were portrayed as helpless, three were objects of violence, two were burdens, two characters were laughable, one was her own worst enemy, and one was a ‘Super Crip’. Only five characters with disabilities were depicted as inclusive members of their community. In most of the mainstream comic books and graphic novels deformities are worn by comics’ villains as signs of evil or divine punishment whether it is the Mole Man’s hunched and ‘deformed’ body or Dr Doom’s disfigurement. They are either represented as ‘crippled’ individuals characterized by anger at the world or the incongruous ‘Other’. Some are portrayed as in possession of special superpowers that account for their ability to overcome their disabilities such as in the case of Daredevil. Professor X or Charles Xavier’s character reflects the power of his convictions proving that paraplegia isn’t a hindrance to his worth as a man. His character also highlights the strength he holds within his mind is incredible both in terms of his intelligence and his psionic powers. However, throughout he is depicted in a wheelchair and subjected to controversy. Reverse to the superhuman powers comics may take the route to representing characters as a stupid, forgetful, and an element of mockery and fun. Professor Cuthbert Calculus, a fictional character in The Adventures of Tintin, the comics series by Belgian cartoonist Hergé, is portrayed across as a half-deaf and absent-minded physicist who invents many sophisticated devices used in the series. Despite his academic proficiency, his deafness is a frequent source of humour. Another picture that emerges out of this situation is Calculus’s denial of being near-deaf and insistence that he is only 80

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a little hard of hearing in one ear. The latter is much in congruence to the concept of adhering to the gaze of the ‘Other’ and perfect able-bodiedness and normalcy. There’s a rich history of debates regarding how accurately comics represent disability and diversity. Some have argued that while in terms of diverse representation, comics have harped on the diversity of their hero characterization from race, to gender and sexuality, but have ignored disability wherein it still continues to be treated as a type of paradox when it comes to ‘super’ humans. As Rosemarie Garland-Thomson notes in her foreword: Hyperbole makes comics a welcome home for mutants, monsters, freaks and all manner of people with disabilities, even if the characters themselves have difficulty being reconciled to their status. Disability—as both a social construction and a lived experience— exists in the spaces of the out of scale. (xii) However, at the same time, it will be incorrect to state that all disabled heroes are surviving in inconspicuousness or negative representation. Over the past few years, one has seen a change in the trend of representation of disability particularly characters focusing on post-traumatic stress disorder like Batman, Captain America and Tony Stark (Iron Man). However, much is left for other categories of disabilities and disorders to be addressed such disorders as autism, bipolar personality disorder, body dysphoria etc. On the other hand, comics if used carefully and in a sensitized manner can communicate more effectively. Birge (2010), ‘Comics are literally making visible the stories of individuals and groups who have largely been excluded from our social and political narratives’ (p. 2). Jacobs (2008) maintained that the gutter (comics page has multiple panels with gutters separating them from each other) may be either a physical or conceptual space that acts as a caesura through which connections are made and meanings are negotiated. Images of people, objects, animals, and settings, word balloons, lettering, sound effects, and gutters all come together to form page layouts that work to create meaning in distinctive ways and in multiple semiotic realms. (p.11) This finds greater support in Catherine Labio’s (2015) argument in ‘The Architecture of Comics’: there is an architectural unconscious of the comics page, an extradiegetic mirroring of domestic architecture that gives the page 81

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its basic structure and accounts in significant measure for the readability, emotional power, and popularity of the genre. The classic page configurations of Franco-Belgian  bande dessinée, American comics, and Japanese  manga  correspond to the basic shapes and facade structures of residential buildings in their places of origin. As a result the page, no matter what the subject or style of the comic, automatically evokes the meme of home; it is always already familiar. This architectural precedence enhances the legibility of comics. It turns the page into an identifiable and measurable space and helps the reader master a highly complex and hybrid genre. … Additionally the architectural disposition of the page intensifies the emotive charge of comics by triggering individual and collective memories—of home, childhood, and earlier examples of narrative art. The challenge to the ableist structures in terms of accessibility gets clearly communicated across to the readers as they relate to Clint Barton’s (Hawkeye) experience of labour and the delay imposed by the inaccessibility of the cab and later to the discursive and architectural barriers as the inaccessible flights of stairs when as one reads through Hawkeye (#19, p. 4 and 10, Matt Fraction and David Aja. DC Comics). The latter clearly states the plight of the Hawkeye being subjected to complete dependency and assistance of another person due to structural limitations. However, a careful analysis of this also unearths another issue associated with the depiction of such discursive and architectural barriers. This outlook indirectly tends to base itself more on the grounds of sympathy and pity and attract the attention of its non-disabled readers by temporarily experiencing disability. This inclines in assigning the status of a visitable embodiment to a disability, creates an impression of it being an undesirable future and makes the readers relate to the disability condition with a sense of pity rather than sensitivity. Graphic novels like Epileptic and The Ride Together, represented disability through the lens of the sibling of someone with a disability thus providing significant insights into challenges of having a family member with disability, a fears, prejudices and assumptions about living with a disability and the impact of growing up with a sibling with disability. El Deafo, a memoir about growing up deaf by Ceci Bell, is an example of using visual media as a means of representing disability experience and supports that graphic novels and comics using visual imagery facilitate better means of communication than in written language alone. Bell explains that using a graphic memoir was: the perfect medium for this story because of the speech balloon. For example—if as a lip-reader—I am wearing my hearing aids and I’m looking right at you speaking, I understand every word you 82

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say, because I’ve got some sound coming in and the visual clues from your lips. So in a graphic novel, that speech balloon would be understandable to everybody ….. But if I maybe had my hearing aids out and wasn’t looking at you, your speech balloon would be empty, because I wouldn’t know what you were saying. And then if I had my hearing aids in, and I’m not looking at you—I can hear your voice because of my hearing aids, but it’s all garbled, and so the speech in the speech balloon would be garbled. (NPR, 2014: 3) Manga, a form of graphic narrative developed in Japan, is examined well, through Keiko Tobe’s With the Light: Raising an Autistic Child. Chris Foss’s essay ‘Reading in Pictures: Re-visioning Autism and Literature through the Medium of Manga’ is one of the strongest pieces in the book, because Foss places the work within the context of other autistic narratives by authors such as Mel Baggs and Dawn Prince, as well as Ralph Savarese’s portrayal of Tito Mukhopadhyay. Real, a Japanese Manga novel by Takehiko Inoue, centres around the three main characters all marginalized by society for various reasons and struggling to do the one thing they love, play basketball: Nomiya, Togawa and Takahashi. The book provides a realistic depiction of physical disabilities and the struggles of both characters with and without disabilities as troubled and realistic teens. A Silent Voice  (‘The Shape of Voice’) a Japanese  manga  series written and illustrated by Yoshitoki Ōima creates a certain degree of sensitization through its story. It narrates the tale of Shōko Nishimiya, an elementary school student who is hearing impaired being subjected to bullying by classmates and particularly Shouya Ishida that results in her seeking transfer to another school. It also skillfully traces Ishida’s life of realizing his unfair treatment to his classmates and eventually brings consolation to him through reconnecting with Nishimiya and even making attempts such as learning sign language so he could apologize to her. Barker (2014) argues, that although disability most often represents loss, disability gain refers to ‘the concept of what a person can gain when they “lose”; the creativity of working around obstacles, fueled by necessity; instead of becoming creative in spite of your disability, you become creative because of it’. Rosemarie Garland-Thomson also considered disability gain as a distinctly ecological concept, as part of a ‘case for conserving disability’ and ‘as a resource to be conserved rather than a liability to be protected’. Referring to comic characters a good example of this is Clint Barton (Hawkeye). Tracing his life one finds him traversing through numerous phases. Although he became deaf after an accident (as is evident from the letter on the top right side panel) and wore a set of hearing aids which were only revealed occasionally, he pursued what he loved and worked as an Avenger. However many challenge the title of ‘Super Crip’ being assigned 83

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to him because such measures tend to result in underrepresentation of a person’s ability. With reference to this Alaniz explains, ‘the super-power will erase the disability, banishing it to the realm of the invisible, replacing it with raw power and heroic acts of derring-do in a hyper-masculine frame’. (Hawkeye #19, p. 2. Matt Fraction and David Aja. DC Comics.).

Impact of Text and Graphic Novels on Perceptions of Disability among Young Children and Adolescents Perry Nodelman had stated that picture books are a significant means by which we integrate young children into the ideology of our culture. Like most narratives, picture book stories most forcefully guide readers into culturally acceptable ideas about who they are through privileging the point of view from which they report on the events they describe. Nodelman’s view was strongly supported by Marriot (1998: 4) who maintained that picture books are, like all children’s texts, ‘inherently ideological’, referring to the ‘network of beliefs, values and social practices which are explicitly espoused by or more often implicitly sustained within the text’. He describes picture books as providing ‘perspectives on ethical and moral issues which reflect the author’s perception of value and his or her aspirations for the present and future nature of social life’ (p. 5). Marriot referred to this as ‘the moral imperative’, that is, consciously or unconsciously, overtly or covertly, picture books provide through the combination of images and words, themes and ideas, texts and subtexts, a representation not only of how the world is, but also of how it ought to be. (pp. 5–6) Studies by Brown (1998), Arizpe and Styles (2003) emphasize on the effect of children’s literature and visual literacy on the formation of attitudes about disability. They quote Perry Nodelman in Hunt (1996: 116–118): picture books are a significant means by which we integrate young children into the ideology of our culture. Like most narratives, picture book stories most forcefully guide readers into culturally acceptable ideas about who they are through privileging the point of view from which they report on the events they describe. McTaggert (2008) argued that graphic novels are useful in the curriculum because they ‘enable the struggling reader, motivate the reluctant one, and 84

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challenge the high-level reader’ (p. 12). Graphic novels help struggling readers by providing them with the images they need to decode messages that are communicated via text and students will be more likely to choose and enjoy reading if reluctant readers are engaged in material in which they are interested. McTaggert also highlighted how graphic novels can be used with more advanced students in promoting higher level thinking, writing, and reading skills. Exploring characters in books not only enable children and adolescents to learn about various disabilities, but discussions and analysis facilitate greater understanding of issues such as defining disabilities, questioning and critiquing notions of normalcy; idealizing disabilities; identifying with characters and developing an advocacy stance. Adomat (2009) maintained that examining how disability is socially constructed in literature can enable readers to analyze how disability is defined, its impact on the character’s interactions with their family and the wider community and the problems that these characters experience. It also familiarizes children and adolescents with the underlying principles centring on differentiation and its correlational impact of segregation and isolation (Solis, 2004). It is particularly important that teachers should help children and adolescents develop appropriate understanding of terms much beyond the visible congenital and acquired physical differences. In this relation, one can mention Margaret Price’s ‘Mental Disability and Other Terms of Art’, in which she examines how difficult naming and labelling can be, especially when such a ‘broad range of conditions and impairments … affect the mind. These [conditions] can be subdivided into a number of categories: mental illnesses (madness), cognitive disabilities (mental retardation, intellectual disabilities), autism spectrum disorders (neuroatypicality), and learning disabilities (learning difficulties)’ (p. 118). Because the categories ‘blur considerably’ (p. 118). However, it is equally important to bear in mind that although comparatively more books with characters with disabilities are published today, the percentage is still very small as to the total number of children’s picture books published each year (Blaska, 1996). Heins (1982) specified that the general quality of children’s literature is elusive and most books reviewed lacked in the areas of literary quality and a lack of stereotypes. Hence it is imperative to consider the absence of stereotypes and accuracy of information about the disability. Dyches and Prater (2000) suggested that an evaluation of theme setting, plot, point of view, literary style, and characterization of persons with disabilities is needed in the process of selecting appropriate materials which should be appropriate for the age of the anticipated reader. Smith-D’Arezzo (2003) also maintained that educators and researchers should also consider readers’ response to the text in terms of the depth of thought driven by the transactional nature of reading. It is important to keep this in view because the most elusive part of quality fiction for children is in the connection the target audience is able 85

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to build with the text and the protagonist of the novel. Hence a teacher should focus on four areas when choosing fictional books about disabilities: well-developed structural elements, a story that is engaging to children with well-developed and realistic characters with disabilities, accurate depiction of special education issues as applicable, and the teacher’s emotional connection with the text. This is more so because a carefully constructed discussion surrounding the stories is equivalently important so that children may glean reinforcement of negative stereotypes they personally hold from reading even the highest quality stories with positive portrayals of persons with disabilities without guidance. Identification with the character in a story, where the reader can visualize similarities between himself or herself and the book character casts a significant influence on the attainment of the essence of literature (Sridhar and Vaughn, 2000; Prater et al., 2006). Recent years have also witnessed the emergence of another forum for representation and promotion of interest, dialogue and view on disability wherein comic book-fan parents inspired by their children with disabilities, have started publishing comic books with protagonists and superheroes with disabilities. ‘Metaphase’ by Chip Reece, ‘The Adventures of Jake Jetpulse’ by Led Bradshaw are to name some of the works created while active role is also being played by publishers to assist parents in this endeavour such as Marvel released Blue Ear in 2014, inspired by Anthony Smith, a hard-of-hearing four year old.

Conclusion Hence in lieu of the usual manner in which certain children literature and other narratives portray disabilities as inconsequential, minimizes the genuine challenges that persons with disabilities experience. Highlighting the engrained negative implication of misrepresentation, Shakespeare (1999) mentioned that The use of disability as character trait, plot device, or as atmosphere is a lazy short-cut. These representations are not accurate or fair reflections of the actual experience of disabled people. Such stereotypes reinforce negative attitudes towards disabled people, and ignorance about the nature of disability. Hence advocates of disability, writers and publishers need to become aware of and sensitive to the misrepresentation and re-representation of disability. This is imperative because as Mills (2000) had rightly pointed out that, the notion of ethics and appropriation in fiction has too long been overshadowed by the protection of artistic freedom. At the same time, disability writers are emphasizing the need to move beyond the simple identification of oppressive roles and the need to be based on the increasing use of 86

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transgressive readings and presentations of literature from the perspective of both persons with and without disabilities. The purpose of such approaches is however not to destroy the books we have loved, but to question what has been learned from them and how they have influenced understandings as stated by Keith. Keith further mentioned that we may also speculate how future representations may provide more accurate, representative and visible presentations of disability. Realistic and contextual based approaches will facilitate reliable, valuable and in-depth cultural analyses and representations of characters with disabilities.

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6 ‘DISABILITY COMMUNICATION’ Media Ecology and Disability

Discourse: Media, Religion and Disability Religious beliefs permeate many aspects of culture. Hence ignorance of the salience of religious teachings about the nature and meaning of disabilities as they relate to both individuals and society limits the opportunity to fully understand the experience of living with disability. Inability to comprehend the significant impact that religious belief and experience can produce on the lives of many individuals with disabilities may result in perceiving their innate humanity as incomplete or less complex than other people (Swinton, 1997). Spiritual beliefs may greatly influence perceptions of people with disabilities, of themselves, others and the world (Dellassoudas, 2000). The media ecology approach to communication study argues that one needs to perceive communication and communication technologies both as constituting an ecosystem and existing within a larger cultural ecosystem. From this perspective, the communication ecosystem does not only consist of the technologies themselves but also previously established habits and practices of the communities, the idea circulating in the society through communication, the economies of communication as well as who can communicate with whom in the society. There exists an interlocking relationship between media ecology and theology. However, the primary question that arises is how and where do these two distinct areas of studies intersect? This relationship has found a place through the writings of St. Augustine, Thomas Aquinas and Martin Luther to Richard Niebuhr’s work on Christ and Culture. Several pertinent questions have been raised on this relationship by eminent writers. Elaborating on the interlocking relationship between media and theology, Walter Ong (1969) stated that with changes in our forms of communication our theology also undergoes changes. Hence understanding of how forms of communication have influenced theology facilitates better understanding of theology. William Biernatzki (1995) in his edited book Communication Research Trends explored a wide array of issues ranging from whether 88

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journalists are irreligious to how religion is being reported. Paul A. Soukup (2002) in Communication Research Trends argued that in contrast to the other approaches to media and religion, communication theology provides a more abstract set of concepts to situate the interaction of these two deeply human events (2002: 29). Soukup identified five areas where communication environments and theological environments overlap: collection, culture, creed, community and code. According to him, media ecology allows an integrated approach to teaching theology and communication. Elaborating on this Soukup highlighted how media ecology approach to communication research suggests that computer networking along with any other forms of communication, interacts with religion, theology and other aspects of culture in the manner of an ecosystem. It is important to bear in mind that theology has itself developed a set of practices within the communication environment that in multiple ways mirror what has happened with the media. This is clearly evident through the expansion in terms of specialized topics addressed such as pastoral theology, or theology of culture. However, at the same time theology has also become constricted to the discourse of a few elites who policed themselves and in some form or the other became subservient to a religious or denominational body (p. 4). Discursive exchanges are embedded in everyday mediation, transmediation and remediation processes across different platforms of media. Recent works on mediation (Meyer, 2008) and mediatization of religion (Hjarvard, 2008; Lundby, 2013) focus on novel media technologies as intrinsic to religion and consequences for religious developments. This is because the communicatively constructive view of religion takes into account the distinctive role of language and other symbolic acts as forms of action as they constitute representation of human and ecclesiastical relations, create meaning and orient us to wider physical and supernatural worlds. Thompson (1995) focusing on media and modernity particularly symbolic forms and their modes of production and circulation claimed that systematic cultural transformation has resulted due to symbolic handling of modern media and termed this as medialization of culture whereby media began to change patterns of communication and interaction in profound and irreversible ways (p. 46). Elaborating on these Thompson distinguishes three types of interaction: face-to-face interaction, mediated quasi-interaction and mediated interaction. In the case of face-to-face interaction, both verbal and non-verbal expressions are available to all parties present. Mass media, like newspapers, radio and television, provide what Thompson calls mediated quasi-interaction, by which he means that the communication addresses an unknown, unspecified group of people who, what is more, are unable to interact with the sender. Mediatization was also emphasized in the works of Schulz (2004) and Krotz (2009). Mediatization is to be considered a double-sided process of 89

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high modernity in which the media, on the one hand, emerge as an independent institution with logic of its own that other social institutions have to accommodate to. On the other hand, media simultaneously become an integrated part of other institutions like politics, work, family and religion as more and more of these institutional activities are performed through both interactive and mass media. Korzybski in his book Manhood of Humanity: The Science and Art of Human Engineering  (1921) while analyzing what it means to be human, believed that it was important to understand what it means to be a human being prior to considering language, symbolization and communication.  He argued: The importance of a right answer is sovereign—for it is obvious, once the fact is pointed out, that the character of human history, the character of human conduct, and the character of all our human institutions depend upon what man is and in equal or greater measure upon what we humans think man is. (p. 291) Korzybski viewed man as a ‘time-binding’, structure, the natural universe, abstracting and environment. In lieu of this, theological discourses facilitate a deeper insight into media ecology analysis making one more conscious of the use of language and its consequences for humanity. At the same time, it can harness our ‘time-binding’ attributes, our ‘spiritual’ and our moral attributes developing a rationalized mind to question if the media is promoting the correct attitude? Does television constructively contribute towards strengthening our cultural life or are we merely ‘amusing ourselves to death?’ Korzybski, McLuhan, Ong, Ellul and Postman regarded it important to understand the structure of our languages and our media. According to him, ‘In structure we find the mystery of rationality, adjustment …. If we want to be rational and to understand anything at all, we must look for structure’ (Science: 69). Hence Korzybski set forth his theory of symbolization in which he identified structural principles of language in which we think and behave. His theory of language was based on the natural universe and identified certain structural principles of the natural universe: change, order, uniqueness, complexity, levels, interconnectedness, context, nonadditive nature of reality, and environment. Korzybskian theory that interlocks media ecology with theology is his theory of abstraction which focuses on the human process of selection, omitting, organization, and categorization of the details of reality.  A normal process of abstracting moves continuously from lower to higher levels of abstraction.  Difficulties in thinking results when one stays at lower levels of abstraction and does not move on to higher levels: when one goes up to higher levels of abstraction and does not come down to lower levels; when one merely stays at one level of abstraction which Wendell Johnson 90

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referred to as ‘dead level’ abstraction (Johnson, 1946).   One finds reference to abstraction through Ellul’s The Humiliation of the Word, wherein he critiques writing as having become abstract, having lost its vitality, its power, its life (pp. 46–47). Forms of communication change not only what we think but also the way we think. As Ong states, ‘the invention of writing restructures consciousness’ (pp. 78–116).

Print Media, Alternative Media and Disability In agenda setting terms the sources tell the audience ‘what to think about’. Gusfield (1981) has developed a useful framework for analyzing how a problem such as discrimination against people with disabilities comes to be seen as a problem within the whole society. In his idea of ownership of public problems, it is understood that all groups do not have the same power, influence and the authority to define social problems. A group must truly own a problem to push it into the public sphere. Gusfield further explained that a component of this culture of public problems is mass media. Media help construct the ‘reality’ of a public problem. In this relation, it will not be completely incorrect to state that in the Indian context, print media had/have limited understanding of the disability rights since the inception of the PWD Act, 1995, and hence they began to develop some news sources with the disability community. A review of past research on news sources elucidates that news media prefer sources from government and other elite sources. Tichenor et al. (1980) in their research reported stories about the conflict that the power elite holds from the media position, so the print media ends up reinforcing the outlook of the dominant power in the community. In conflict situations, the press contributes to either widening or narrowing of differences in knowledge within the system. Olien et al. (1989) again confirmed that the media lean in favour of the status quo and the ‘mainstream’ when covering public protests: ‘Media report social movements as a rule in the guise of watchdogs, while actually performing as “guard dogs” for the mainstream interests’. Numerous studies have highlighted how ableist cultural beliefs about disability may be embedded in the news frames of stories about disability and these beliefs permeate into general representations of disability in news media (Biklen, 1987; Clogston, 1989, 1990, 1991; Cumberbatch and Negrine, 1992; Haller, 1995, 1999, 2000a; Haller and Ralph, 2001; Lellis, 2008; McColl and Bickenbach, 1998). Additional studies of journalism revealed that disability issues were frequently misunderstood and misrepresented by journalists (Gardner and Radel, 1978; Yoshida et al., 1990; Keller et al., 1990; Haller, 2000b; Jones and Harwood, 2009; Jones, 2012). The advent of the print media, particularly newspapers and journals, marked the beginning of social revolutionary force characterized by quick production on a regular schedule and by an open channel of communication. 91

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Though the technological advances added elements of speed, flexibility, quality, etc., it also quite silently shouldered the print media with added social and moral responsibilities. Media considered to be the fourth pillar of the state, is the custodian of human rights of minorities, socially and economically backward and downtrodden people in society (Media and Law, 2006). There has been a dearth of interest and initiative on the part of the media in addressing the issues of the differently abled and often what goes reflected at times are subjected to misrepresentation and under-representation. Of the several grounds on which disability writers, scholars and activists have contended the role of the print media in disability representation has been on that the news media frame disability through images and words that are often stereotypical (Boyer, 1988; Haller, 1999, 2000; Jones and Horwood, 2009; Ross, 2001; Schneider, 2003) while others highlighted on the manner in which news media shape how stories are understood by audiences (Goffman, 1974; Valenzeula, 1999; Haller, 1999, 2010; Haller et al., 2006; O’Malley, 2009 ). Commenting on faulty dissemination of facts to the public and various newspapers and news channels becoming increasingly biased and corrupt, Justice (Retd) Markandey Katju, Chairman of the Press Council of India, specified, The media is not justified in giving 90 per cent of its coverage to entertainment, leaving only 10 per cent to real issues which are basically socio-economic in nature. Doubtless, the media should provide some entertainment. But, the thrust of its coverage should be in public interest. You have lost your sense of proportion. India is passing through a transitional period of her history from a feudal agricultural society to a modern industrial one—a painful and agonizing period in history. In this transitional period, ideas become very important. You have to promote rational ideas, scientific ideas, and modern ideas, in order to help society get over this transitional period faster and with minimum pain. (The Hindu, 2011) Bogdan and Biklen (1977) condemned the media of underestimating significant issues centring disability through selective coverage with reporters often failing to cover their plights and instead focusing on derogatory points thus subjecting it to ridicule and endangering the social responsibility of media. Haller (2010) mentioned that the positive twist of many of these news narratives is ironic given that the news media are often criticized for their somewhat constant negative news about disability topics. He had further argued that people with disabilities are the sources in feature stories, rather than news stories. According to him non-reliance on people with disabilities as 92

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‘sources’ of information or possess the right to speak for themselves further casts a negative imprint on the mind of the readers. The power of the media message tends to be heightened particularly in those cases where there was no direct experience or other knowledge of an issue, and conversely to decrease when people had direct experience. Audiences very often negotiate their beliefs and attitudes in response to media messages which signify that these messages may not be received uniformly by all audiences and the level of influence that they can produce also varies. Transmission of misconstrued information by the media shaping the attitudes of people has been an extensive subject of discourse globally. Briant et al. (2011) in their study of UK news coverage and attitudes and beliefs about disability and persons with disabilities showed that, across the sample periods, there had not only been a significant increase in the reporting of disability in the print media. Moreover, further analysis revealed that this increase had been accompanied by a shift in the way that disability was being reported whereby the subject had become more politicized and there had been a reduction in the proportion of articles which described disabled people in sympathetic terms, whilst those focusing on disability benefit and fraud had grown. Titchkosky (2007) while examining disability through headlines, argued that news headlines do cast a significant impact on readers’ reading because headlines ‘frame a topic for the imagined reader’, and they make meaning for someone who is looking for something sensible and interesting mentioned that ‘[Frames] govern our ways of knowing, taking interest in [something] and explaining it’ (p. 120). Addressing the role of the print media in the context of disability Sengupta (2008) highlighted that ‘It is observed that age-old social stereotypes are getting reproduced in the press and therefore, strengthening the injustice towards the society of the disabled in India’. Elaborating on this she further mentioned that the role of media such as the Statesman, Telegraph, Anandabazar Patrika, Aajkaal, Times of India, Asian Age, Hindustan Times, Bartaman and Ganashakti is not confined to bring the issues to limelight but also attempt to build public support to sort out the issues. A study by Sruti Disability Rights Centre and School of Media, Communication and Culture, Jadavpur University (2006) reveals continuous negligence on the part of media towards covering issues of the disabled in India. It is very evident that media cultivates established social stereotypes through various portrayals and the representation barely shows the reproduction of society’s institutionalized biasedness (Media and Disability, 2006). Joseph (2005) claims that media coverage of disability is more noticeable on days like the International Day of Disabled Persons. For the rest of the year, it gets less media attention. Again, the coverage is skewed in nature. Media focuses on individuals who are physically or mentally challenged and portrays some of them as either heroes or victims. Joseph also says that the presentation of disability in the print media is derogatory in tone. 93

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According to Sadaf (2011) ‘Media should be strong enough through its surveillance function, and it can have a very strong impact through contemporary news media’. He further argued that media coverage is sometimes used to uncover the truth, highlight the important and neglected aspects of a story, to make public opinion favourable or against, to make perceptions, sometimes media covers because some forces like pressure groups public or private sector to foreign influence want to cover them. Lakra (2009), thoroughly criticizing the lethargic approach of the media towards covering developments related to disabilities in India, suggested an expanded resource base for the persons with disabilities and ways for improving their access to these resources. This is primarily because there is the need for disability issues to be in the public domain and media can have a tremendous impact on sensitizing the society. There is the urgent need for the press to allocate space for disability issues so that the issues can be amicably sorted out. Highlighting on this issue, Sridhar (2002) mentioned that the national as well as vernacular press with community people should take the baton to sort out this developmental issue by eliminating the skewed coverage on disability in urban and rural areas. It is rather unfortunate that coverage of disability issues is biased and event based even in leading newspapers in India like The Hindu, New Indian Express and Times of India. In most cases the contents of the newspaper are apparently not disability friendly. The coverage of disability issues is skewed in terms of geography—urban and rural—and so is the editorial priority of the media.  The contents on these issues in the editorial and opinion pages are scant and in most occasions fail to provide amicable solutions, thus reducing the role of the media geared more towards fulfilling the needs of the labour market rather than fulfilling the social needs of persons with disabilities. Herein The Press Council of India (PCI) can play a significant role in chalking out a uniform editorial policy in consultation with organizations working for disability. The skewed representation has now come to be further replaced with another trend that is rampant; that is disability construction in the Indian print news media has come to be construed as a product of the political economy of representation. As a resultant news articles have started presenting persons with disabilities as having use value’ in society, open to ‘exchange value’ in the consumerist market. Two predominant lenses still plague large amount of reporting on disability in India whereby one perceives and projects people with disabilities as objects of pity or a nuisance and the other in a regardless manner places them on the pedestal as objects of inspiration. Whichever approach is adopted, it results in communicating about people with disabilities through a firmly ableist lens and does so for promotional value rather than news value. 94

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Often they tend to project disability in relation to conflict or complex events or as an issue within a larger social conflict, or an issue that negotiates for and on behalf of Persons with Disabilities (PWDs) rather than an actual representation. Different framing pattern/techniques, i.e., highlighting primarily on the impairment of the human body than on the person himself/herself, editorial formats, i.e., position picture frame or frame stories placing them in different pages of the newspaper are often reflective of the news representations of disability geared more towards fulfilling the economic/productive needs of the labour market or as a political construct than voicing the needs of persons with disabilities. The tendency has also been to project it within the Charity frame or the ‘Super Crip’ image. One finds reference to such through newsflashes such as ‘Spare a thought for the disabled, pass the bill’ (Times of India, New Delhi, December 7, 2006), ‘School Kids use Crowd-Funding’, ‘Disability is just an enabler for them’ to name a few. Sen (2004) points out newspapers like the Times of India, Hindustan Times and Deccan Herald devote only around 4% of a total of 24 pages to developmental issues. Even therein no disability news appears on the front page. He asserts that the mainstream media have their limitations to cover issues like HIV/AIDS, domestic violence, poor farmers, child labour, tribals and minorities. He accuses the media for being mad about coverage of politics, business, sports and regular events, sidelining issues like disability. Another allied factor that goes hand in hand with faulty reporting is the absence of inclusive language by the media. It is imperative that the media need to be aware of the correct terms to be used when addressing people with disabilities rather than the proliferating use of terms like blind, crippled, defective, wheel-chair bound, interchangeable use of handicap, impairment, etc., which are not unacceptable and politically incorrect. Language coupled with improper use of photographs, illustrations also play a dominant role in exhibiting incorrect news. Lack of preparedness and commitment among media professionals to accommodate persons with disabilities in the production process tends to reduce them to mere silent consumers of news. This is further aggravated by the lack of any specific recruitment policy for persons with disabilities in the media sector. To much dismay, even recruitment if done remains merely confined to ‘desk-based’ jobs, advertising, accounts, even sub-editor or to fill in the vacancy of an able-bodied employee. It is difficult for media agencies to visualize recruiting a person with disability as a reporter. Being a fast-paced job that demands mobility, lack of accessibility for people with disabilities coupled with the stereotype mindset finds it difficult to imagine a physically challenged person, working as a journalist. Under such conditions what gets reflected and communicated is the dominant ableist perspective. The degree of ambivalence among media professionals has consequently signified the prevalence of the charity model over the inclusion policy. 95

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When one attempts to do a detailed content analysis of the newspaper coverage of disability stories (features, editorials, new briefings) in India in terms of number and area of stories, articles, photos and editorials the picture that emerges glaringly points out to the reality that the print media coverage of disability issues in India. Those scholars investigating Paralympic and Para-sport coverage (e.g., Beacom et al., 2016; Bruce, 2014; Cherney et al., 2015; Purdue and Howe, 2012; Pappous et al., 2011, Purdue and Howe, 2013), have pointed to the marginalization or inferiority of elite disabled athletes, reinforcement of medicalized, comparative lack of interest, and the individualized and stereotypical understandings of disability, often presenting disabled athletes as having triumphed over adversity (Cherney et al., 2015; Hardin et al., 2004). In particular, Paralympic coverage has been critiqued for a dominant narrative of heroic achievement and disability bravely overcome, and as nonrepresentative of everyday life with disability, suffering, pain and loneliness (Wood, 2013). Even events, Paralympics Games organized in Rio, Brazil in 2016 where the Indian team got four medals while they fetched only two medals in the Olympics and should have had more media coverage clearly reveals the discrimination by the media. However, it will be unfair to say that the representation of issues concerning disability in both national and regional newspapers as agents of communication and social change are completely bleak though these need to be understood in the wider context of the media landscape in India, in which the amount of coverage been given to disability as a human rights issue is fairly limited. The Internet/online medium has evolved both as a boon and a bane. While it has brought along within its fourfold instantaneous transmission and updates it has also set new challenges centring on matters of anonymity, access to information, protection of intellectual rights, etc. Elizabeth Eisenstein in her work The Printing Press as an Agent of Change had specified that credibility of the printed word accrues through reputation and print quality, which rather, unfortunately, seems to be inherently absent in today’s cyber journalism. As alternative mediums of communication, websites like www​ .i​​ ndia.​​ gov​.i​​n​/off​​i cial​​-webs​​ite​-c​​hief-​​commi​​ssion​​er​-pe​​rsons​​-disa​​bilit​​ies, www​.niepmd​.tn​.nic​.in, www​.ccdisabilities​.nic​.in, www​.disabilityindia​.com, www​ .inclusiveplanet​.org​.in, www​.infochangeindia​.org, www​.indiatogether​.org, Enable Academy (https://www​.enableacademy​.org/) and Enabled​.​in (http:// enabled​.in​/wp/), and www​.dnis​.org, providing updated information for the disabled, researchers, academicians, and policymakers associated with disability issues. However, one can declare without fail that all websites are not disabled friendly. For instance, the EPathshala, was created by the National Council of Educational Research and Training (NCERT), to enable students, educators and parents access educational e-books and other content 96

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from their mobile phones but unfortunately, the app is completely unusable for persons with disabilities. In support to this issue of inaccessibility, the Centre for Internet and Society (CIS) in a press release has categorically mentioned that research has revealed that many Indian government websites, Indian government apps, and privately owned apps are completely or partially inaccessible to persons with disabilities, resulting in their exclusion. With app usage growing over 40% every year, Indians with disabilities are at risk of being excluded from society as everyday activities such as managing their finances, keeping in touch with friends, or staying in touch with their government representatives becomes impossible. Hence for digital technologies to have the potential to empower there is the need to put accessibility standards and universal design at the core of all technology development and use. Ellis (2010) maintained that systemic ‘ableism’ is perpetuated by traditional media which promotes individualized representations of disability to absolve society of its responsibility for creating accessible environments. In fact, social networking and online applications have allowed them to become more connected in public debate and interact socially with others in the community (Ellis and Kent, 2011). Social media sites such as veoh, flickr, vimeo, vevo, break​.co​m, daily-motion, metacafe, etc., along with YouTube, have an increasing community of persons with disabilities accessing and connecting via them. Further social media, such as Facebook, Twitter, LinkedIn, ooVoo, Skype, Whatsapp, and others, have opened up communication channels for persons with disabilities with the rest of the world. Social networking sites like Facebook, Orkut, LinkedIn, YouTube and Second Life are being used by Disability organizations like Sruti Disability Rights Centre, Disability Support Group, Physically Challenged Cricket Association of India,‗National Centre for Promotion of Employment for Disabled People Disabled India,‗Udaan for the Differently Abled and Disability Research and Design Foundation, ‗Ability Foundation. Inclusion of the link to AYJNIHH-NEWS in YouTube by the Ali Yavar Jung National Institute for the Hearing Handicapped (AYJNIHH) has opened up new avenues for digital accessibility and possibilities. Several researchers maintain that blogs have also now become an alternative means of communication against the mainstream media and can be considered as a potential tool for forming and moulding the public opinion (Scanlan, 2003). In this context, blogs are being used to disseminate information on disability in India such as Sruti Disability Rights Centre, AccessAbility (http://accessability​-india​.blogspot​.in), Centre for Disability Studies (www​.blog​.dis​abil​itys​tudi​esnalsar​.org/), Digital Enlightenment (http://blog​.iridiuminteractive​.com), Disability Rights Through Courts (disa​​ bilit​​yrigh​​tsthr​​oughc​​ourts​​.blog​​​spot.​​in), etc. Although rapid technological innovations have given access to information but at the same time have intensified the magnitude of the digital divide 97

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(Chaudhry and Shipp, 2005) and inaccessibility issues, i.e., having access to assistive technologies for using social media such as an on-screen keyboard for a person with a mobility impairment or a screen reader for a person who is visually challenged or playback of a captioned video for a person who has a hearing disability. While previous legislation such as the Guidelines on Indian Government Websites (2009) or the National Policy on Universal Electronic Accessibility (2013) mandated equal digital access for persons with disabilities, the implementation of these policies leaves much to be desired. Even the ‘Information and Technology Act 2000 of India’ is completely silent on the subject of web accessibility, thus leaving much to be based on fragmented pieces of legislation that ambiguously addresses the questions of availability and accessibility of public information and cultural and educational materials. The Rights of Persons with Disabilities Act, 2016 had categorically stated that: The appropriate Government shall take measures to ensure that,— (i) all contents available in audio, print and electronic media are in accessible format; (ii) persons with disabilities have access to electronic media by providing audio description, sign language interpretation and closed captioning. With the aim to achieve the objective as specified by the RPwD Act, the Accessible India campaign had stated on their website that about 25% of public television programmes aired by the government channels will meet these standards by March 2018. However, to much despair a lot of important announcements, interviews, information on the cable televisions along with the educational modules are simply not accessible.  In India also there is the acute need to develop vigilant monitoring guidelines and agencies to ensure it is an effective disabled-friendly medium. As an initiative towards making communication and TV series more accessible to persons with disabilities, the Telecom Regulatory Authority of India has suggested a few recommendations, much of which is ambiguous and awaits clarifications. It is important that the media needs to stop portraying persons with disabilities as victims in which as an alternative mode the radio also plays a significant role. While in some countries there are vigilant mechanisms to ensure this, there are no provisions for such in India. For instance Australia besides having successfully implemented radio reading services for the visually impaired and those with print disabilities by broadcasting printed content via radio maintain strict guidelines in place for their producers when it comes to and prevent any programming coming across as  patronizing, victimizing, demonizing or normalizing. Even the British Broadcasting Corporation has guidelines for the portrayal of disability on air, instructing 98

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producers not to perpetuate any content that may reflect prejudice and disadvantage existing in societies and to avoid any careless assumptions pertaining to references to disability. However one can mention a few noticeable initiatives. One such initiative has been the Doordarshan telecasting first weekly bulletin for the hearing impaired since October 15, 1987, and till date the DD News airs a special news bulletin for the speech and the hearing impaired on a daily basis, with special broadcasts on Republic Day and several other national and special occasions. One can access it through https​:/​/tv​​.sign​​langt​​v​.org​​/ show​​s​/dd-​​news-​​for​-h​​earin​​​g​-imp​​aired​/ (VOD, search for News for Hearing Impaired). Another intuitive move was made in 1999, when the BBC World Service Trust in partnership with two Indian broadcasters, Doordarshan TV and All-India Radio, launched a 16-month campaign on leprosy, using 50 television and 213 radio programmes in 20 languages, and 85,000 information posters. It is reported that more than 1,700 live drama shows, 2,746 mobile video screenings, and 3,670 public events or competitions were performed in remote areas. Besides this Radio Udaan, the popular internetbased community radio station manned by visually impaired people which has been offering a platform for the disabled community in India since the last 6 years. The All India Radio maintains an Audio broadcast news website (http:​/​/new​​sonai​​r​.com​​/Audi​​o​-Arc​​hive-​​Sea​rc​​h​.asp​x) that can disseminate information among persons with disabilities but unfortunately the site is not disabled friendly. A careful analysis of both television and radio being employed as another alternative medium for creating awareness about disability and catering to the welfare of persons with disabilities reveals that the efforts despite numerous specifications by the government has been one of negligence. The Public broadcasting service Prasar Bharthi and All India Radio/FM radios and numerous satellite channels offer very little in terms of propaganda or awareness based on specifications by the RPWD Act and the CRPD.

Conclusion Within the cultural studies perspective work on communication is primarily concerned with the construction of meaning, i.e., how it is produced and through particular expressive forms and how it is continually negotiated and deconstructed through the practices of everyday life (Murdock, 1989: 436). Hence this involves an analysis of cultural texts including those produced by the media industries. The cultural studies approach visualizes the media forms as mechanisms for communicating meaning in certain ways much in contrast to the transportation models which considered documentaries, operas, soaps, etc., as mere commuters of meanings to the consumers. Keeping view of this the media system needs to be designed in a manner to promote expression of diversity. Its constituent parts need to be organized 99

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in varied ways so that they can interconnect issues centring on diverse sections of the society as well as be publicly accountable to the society it serves. It is a common belief that religions concentrate primarily on divinehuman relations and aim at personal salvation or liberation from earthly travails while at the same time emphasizing on the significance of social and ethical relations amongst human beings. The intersection of religion and ecology opens up for further investigation the broad interactions of humans as individuals and as communities with the natural world and the universe at large thereby broadening the ambit to explore human flourishing in relation to nature, whether those interactions portray domination or manipulation, respect or reciprocity. Alignment of the passage of human life with natural systems constitutes a profound dynamic of religious energy which manifests itself in and through cosmological myths, symbols and rituals. Therein one experiences the interweaving of cosmological religious thought and environmental ethics. It is undeniable that new time has ushered in the need for new developments. In accordance with this, it is imperative that the media system needs to be designed in such a manner that it promotes the expression of diversity. Its constituent parts need to be so organized in varied ways that they can connect the diverse parts of society. Besides this, the media system also needs to be publicly accountable and be broadly representative of the society it serves.

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7 IDENTITIES EMBEDDED IN OUR BODIES Gendered Constructions at Work

‘Some people confuse acceptance with apathy, but there’s all the difference in the world. Apathy fails to distinguish between what can and what cannot be helped; acceptance makes that distinction.  Apathy paralyzes the will-to-action; acceptance frees it by relieving it of impossible burdens’. (Arthur Gordon1)

The major uniqueness of literature on women with disabilities lies in its diversity, which appears to extend across various disciplines and politics, and is often interdisciplinary in nature. To a great extent, it portrays that multiplicity of difficulties in the lives of women with disabilities are affected by their type and severity of disability. At the same time it is noticeable that considerable part of the available literature focuses on lives of women with disabilities themselves and a substantial part consists of their personal accounts of being female and having disability. The writings portray a myriad of emotions ranging from despair, poverty, powerlessness and isolation, to exaltations, achievements, strength and fulfilment amidst their limitations. Till today, the situation of women with disabilities in India is deplorable as it still awaits the much-needed visibility and political importance. Even though problems relating to women and people with disabilities have been addressed, no serious approach has yet been taken to tackle the dual form of discrimination to which women with disabilities are subjected. One of the major hurdles has been the insufficient level of awareness of the existence of this twofold source of discrimination and its effects. It is further aggravated by the belief that these two aspects of discrimination require separate initiatives. Moreover, the thought that the gender mainstreaming approach would encompass within its parameter the competence to deal with the problems of women with disabilities has further diluted the specific efforts needed. This ‘oversight’ may result from lack of detailed data. A comprehensive interpretation of representation of women with disabilities, that evaluates the strength of the patriarchal order and its alignment 101

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of power within gender roles, emerges when we apply a feminist approach to the role played by the media. The embedded discourse of masculinity within mainstream society asserts itself through normative imaging of the male body (tall, handsome etc.) with the woman whining under the fetters of subjugation being projected as the submissive, self-sacrificing woman. In most cases, women have been regarded as either replaceable objects or an object of pity. The perception of role difference has instilled in the minds of most people the age-old, customary prejudiced thought wherein men are proclaimed superior to women and are therefore endowed with the right to become decision makers. This continuing discrimination has resulted in women with disabilities being viewed as pitiable and dependable individuals, incapable of any independent existence and identity. When compared to men with disabilities, women with disabilities are even perceived to be incapable of studying or working. In regard to this Marian Blackwell-Stratten et al. (1988) in their article, ‘Smashing Icons’ while discussing the political priorities and disabled and non-disabled feminists very skillfully portrayed how they relate and yet differ. They highlighted that being disabled and female is a unique dual status and denotes being different from other women, and although both may agree on issues yet the solutions may differ. Among the several possibilities that have been accounted for the exclusion of disabled women in feminist theory and practice has been the latter reinforcing construction of the former being outside the hegemony of normalcy. It also endorses the assumption that women as a category are regarded to be self-evident and it is this very abstraction of women that positioned of all women having obvious shared concerns regardless of their differences from another (Menon, 2000).

Gender Disparity: Roles, Family and Marriage For men and women, the expectations of gender roles are different, especially in traditional societies such as those in the Indian sub-continent, where each sex is expected to perform different roles in society, according to different criteria. Disability can have a profound impact on an individual’s ability to carry out traditionally expected gender roles, particularly for women. Although both men and women with disabilities would face difficulties in fulfilling their expected gender roles, as long as a disabled man earns a living, his chances of getting married and having a family are much more than those of a woman with disability. She is perceived as one who is unable to perform her traditional roles of a wife, a mother and a homemaker because of her disability and is perceived as one in need of physical assistance in self-care and grooming, and unable to carry out the domestic tasks that require mobility and physical labour. As a result of these negative attitudes and stereotypes about what women with disabilities can or cannot do, many disabled women come to consider themselves as ‘non-persons, 102

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with no rights or privileges to claim, no duties or functions to perform, no aim in life to achieve, no aptitudes to consult or fulfill’. Having a family of one’s own and having one’s entitlement to parenthood recognized can be the hardest things for a woman with disability to achieve in comparison with a woman who is not disabled (who can take these rights for granted) and even with a man with disability. It is a fact is that many girls with disabilities are brought up to believe that they cannot expect to have a relationship with a partner, and much less to have children and a family. They are often deprived of the role of child-bearing, since they are perceived as being in need of care themselves because of their disability, or the common belief is that looking after children requires physical fitness and mobility, which they may lack. Even today mentally challenged women are subjected to sterilization to avoid unwanted pregnancy as the chances of sexual exploitation of such women are higher and people with physical disabilities are perceived to be incapable of taking care of their children. Physically and mentally challenged women are often made to undergo abortions much against their wishes. On the pretext of being in the ‘best interest’ of the women with disabilities, forced sterilizations and abortions are often practised. This reveals the naked truth that a girl with disability is regarded as an individual incapable of having authority over her own physical self, unworthy of taking care of herself if burdened with such responsibility. This also forms the basis of the notion that sterilization can be the best preventive measure for the undesirable pregnancy as a woman with disability is most likely to be an object of rape due to her disability. Garland-Thomson (2001) states that women and the disabled are portrayed as helpless, dependent, weak, vulnerable and incapable bodies. Ghai (2005) rightly points out that disabled girls and women rarely get information about sexuality, birth control, sexually transmitted diseases or pregnancy and motherhood from mainstream health care facilities and it is rather extremely unfortunate that society generally invalidates disabled girls and fears women’s sexuality and their reproductive potential. Ghai (2003) through her works challenges the much-adhered cultural patriarchal order that denies women with disabilities the right to parenthood by establishing its eligibility on qualities that are stereotyped as core attributes of hegemonic femininity (Ruddick, 1990). Ghai (2015) further stated that: Within the dominant Indian ethos, to be a mother was the greatest achievement as a woman. Each day that passed before my second heart surgery, my yearning for a child was accompanied with a stabbing sense of loss. However it is also a culture which privileges only legitimate motherhood … . As a result I was denied the possibility of this very prestigious role of marriage and motherhood are both difficult aspirations. (Ghai, 2015: 8, 9) 103

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Addlakha (1999, 2001, 2005) argues that much of the denial results due to absence of role models with disabilities and the negative social perception of persons with disabilities. Elaborating on the stark condition of women with disabilities, Addlakha concludes that their existence is equated with incapability when it comes to fulfilling the normative feminine roles of homemaker, wife and mother, thus struggling to construct their sexual identities within the dominant heteronormative discourse of conjugality. Similarly, issues focusing on women who were oppressed and punished by psychiatry evolved more from the legal discourse (Dhanda, 1987) which clearly demarcated the line where gender intersected with psychiatry, and predated much interrogation in Indian feminist literature. It questioned the values and foundations of psychiatry, especially diagnostic practices and interrogated the proximity between patriarchal constructions of femininity and insanity.

Perpetrators or Caregivers: the Unsolved Mystery! The Glaring Reality of Violence against Women with Disabilities Violence against women is a universal obstacle to women’s full participation in their societies, and therefore inhibits global stability, peace and prosperity. In India, where IFES has worked with over 40 civil society organizations and government agencies to design grassroots advocacy initiatives that increase access to justice, gender inequality can manifest itself in domestic violence, harassment, honour killings and sex-selective abortion. Violence against women with disabilities incorporates an ‘almost endless list of injustices and maltreatment’ including unnecessary institutionalization, denial of control over their bodies, lack of financial control, denial of social contact, employment and community participation as well as physical, mental and sexual abuse. In majority of the instances a significant portion of perpetrators has been found to be male caregivers followed by the male family members and strangers constituting only a miniscule of the percentage of abusers. In most cases primary caregivers being perpetrators reduce the chances of the victims to disclose abuse. Often hideous motives behind the presence of such people in the lives of the abused person may not be evident to service providers who instead perceive their persistent presence as genuine concern. Lack of assurance regarding their complaints of abuse to be believed or acted on adds on to the innumerable grievances of women with disabilities. Violence against women with disabilities has held the focus of research worldwide as evident through The Council of Europe Plan of Action to combat violence against women (1997), Committee of Ministers Recommendation Report (2002) on the protection of women against violence (2002), or the Report on ‘Safeguarding adults and children with disabilities against abuse’ (2002) (as cited Brown, 2003). The latter report states that: ‘Disabled girls and women share the disadvantages of all girls and 104

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women and are disproportionately victims of sexual violence and sexual harassment’. When it comes to sexuality, people with disabilities face a very ironic situation and their exploitation knows no bounds. The attitude of people was evident in the very response of a hospital’s medical superintendent when enquired about the molestation of a 30-year-old mentally challenged woman in a government mental hospital in Kolkata in 2012, ‘This girl used to run after all the male workers of this hospital. Mentally ill women usually cannot control their sexual urge. I am worried about my male staff’. One finds concrete evidence of such an attitude in the response of investigating personnel in another case in the year 2000, that of a girl with hearing and speech impairment raped in a prison van by two policemen in Kolkata. We do not mind helping you with other cases, but this is about a deaf girl. And we all know these people are more sexually active; it was she who started this … so, I cannot treat this case as rape. An intense inquiry of numerous events brings out the deplorable condition of women with disabilities in the social setting marked by neglect and abuse. One finds it unbearable to read about female patients moving around naked in one of the wards at a hospital in Kolkata in 2008, for which the authorities accounted that their clothes had been sent for washing. Responding to such atrocities in a report titled ‘Violence Against Women with Disabilities’, submitted to the UN Special Rapporteur Rashida Manjoo by Women With Disabilities India Network, National Research Trust Samarthyam and Human Rights Law Network (HRLN) in April 2013 clearly stated Women in mental hospitals are dressed in loose frocks tied at the waist, oversized unisex gowns. They are forcibly tonsured or their hair cropped close to the skull. Patients are covertly discouraged to keep themselves clean and attractive on grounds that they could sexually provoke members of the male ward. Their treatment defeminizes them, dehumanizes them. Disability activists like Nandini Ghosh and others have raised serious concern over such issues. Highlighting the plights meted out to women with disabilities, it is clearly evident in the words of Nandini Ghosh ‘More than the fear of abuse, it is the fear of discredit that the pregnancy will bring to the families, Most cases of abuse don’t happen in public places but inside homes, institutes, hospitals’. Daruwalla et al. (2013) in their study on Violence against Women with Disability in Mumbai also found evidence of lack of acceptance by families,

105

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emotional violence, exclusion and vulnerability. Violence in the natal home emerged as an issue of great concern. The report ‘Treated Worse than Animals: Abuses against Women and Girls with Psychosocial or Intellectual Disabilities in Institutions in India’, analyzing the situation of women and girls with disabilities in six cities across India from December 2012 through November 2014 documents involuntary admission and arbitrary detention in mental hospitals and residential care institutions across India, where women and girls with psychosocial or intellectual disabilities experience overcrowding and lack of hygiene, inadequate access to general healthcare, forced treatment—including electroconvulsive therapy—as well as physical, verbal and sexual violence. In one case, a woman with both intellectual and psychosocial disabilities was sexually assaulted by a male staff member in a mental hospital in Kolkata. Among the reports of atrocities against disabled women a rather shameful incident gathered public attention wherein 14 mentally challenged girls were not only made to undergo hysterectomies in the Sassoon General Hospital in Pune on February 5, 1994,2 but violated all norms conforming to humanity. The integrity of humanity was left nakedly challenged as girls, in the name of institutional care, were stripped of their basic rights based on the hideous rationality of taking precautionary measures against girls with suicidal tendencies, such as not allowing them to wear pajamas with drawstrings as well as sanitary napkins with belts. Mohapatra and Mohanty (2004), while exploring the issue of sexual violence against disabled girls, reported that 12.6% of their physically disabled respondents reported having been raped and 15% confessed of being pinched and touched in an uncomfortable manner. The incidence was found to be higher among the mentally challenged, wherein 2% reported rape and 19% of being pinched and touched in an uncomfortable manner. Nearly 2% physically challenged and 22% mentally challenged women reported being forced into sex or raped by family members. Only 15.6% among physically and 23.9% among those mentally challenged reported abuse. A considerable proportion of women did not file any report. Social withdrawal was found to be the cause preventing depressed patients from discussing their emotional problems with physicians, friends or family. A study from Odisha by Swabhiman in 2005 indicates that women with disabilities were subject to significant domestic abuse and sexual abuse and that the situation was worst for mentally challenged women relative to women with other types of disabilities. The results revealed a shocking picture of one-quarter of women with mental disabilities reporting having been raped (with a large majority of perpetrators being family members), and almost 13% of women with locomotor, visual and hearing disabilities. In only a small share of cases did women report the abuse to her family, and even in the vast majority of those cases, the reaction of the family was either not listening or pretending nothing had happened. A case was reported on 106

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August 15, 2013, in Mukund Vihar, in the Bhalswa Dairy area of northwest Delhi, that of a 12-year-old mentally challenged girl who was allegedly raped by her neighbour aged 43 years, who had physical disabilities. The victim was playing when the accused enticed her to follow him to the shop’s godown and assaulted her.3 Similarly, a case was reported of a 40-year-old mentally unstable and physically challenged woman being allegedly raped in Dammanand Nagar, Nagpur, in 2013. The accused, identified as 35-yearold Ramsingh Gopisingh Mehto, had been arrested under relevant sections of the Indian Penal Code (IPC).4 A case registered in the Dadri police station attracted much attention wherein the prosecutrix in her complaint alleged that on December 29, 2012, when her mother had gone to Aligarh, her father gave her some sedatives and allegedly raped her. The minor girl narrated the incident to her mother on her return.5 Deepak et al. (2014) in their study on violence and sexual violence against persons with disabilities at Bidar district, Bihar found that nearly 58% of the respondents reported of experiencing significant violence while 14% experienced sexual violence. Women faced higher levels of violence compared to the men. Around 59% of the women reported facing violence in childhood while 10% reported sexual violence. Unfortunately, there are no consolidated figures with regard to violence against women with disabilities although in the year 2012 alone dozens of cases of sexual violence on women with disabilities have been reported in the media from the state of West Bengal alone. In recent times, several instances of sexual violence have been reported from different parts of India, wherein the aggressors have taken advantage of the helplessness, vulnerability and disability of the victims and victimized them. The brutal rape of a 19-year-old visually impaired girl by two influential people of the locality in Nadia district of West Bengal still awaits a decisive judgement as the accused have been let free. Similarly, the case of Nagina Choudhury of Jalpaiguri, West Bengal, who was gang-raped in February 1995, has seen no judgement till date. Even the rape of a 17-yearold girl in a suburban train in the presence of other passengers points to the ghastly face of humanity, in which people shamelessly witnessed the inhumane act without any protest.

Redressal Mechanism: A Support or Greater Challenge? There are significant barriers to the disclosure of sexual assault by people with a disability and more especially for women with disabilities. It is important to note that these barriers may operate at societal, organizational and individual levels. The barriers at the societal level are immensely related to wider understandings of sexual violence. If the perpetration of sexual violence is considered acceptable then women with disabilities may also believe that 107

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it is acceptable behaviour and that it is not something to be disclosed. One such instance is evident from The Supreme Court Judgement CIVIL APPEAL NO.5845 OF 2009 (Arising out of S.L.P. (C) No. 17985 of 2009) Suchita Srivastava & Anr vs Chandigarh Administration. In this case, a young girl with an intellectual disability, an orphan who was raised by the Missionaries of Charity and later shifted to a home, was repeatedly raped and abused within Ashreya, a government residential institute in Chandigarh. The girl was unable to complain at any point of time and the abuse came into light when she was found to be pregnant. This portrays the plight of women with disabilities, that women with mental illness or intellectual disability are assaulted and that they are unable to complain, and even their caregivers in some cases are also unaware of the abuse these women are subjected to. The perception of sexual violence as a shameful experience may cause the victim or their family members to withhold disclosure because of the feelings of shame and stigma being associated with the assault. This was evident in a case reported from Aurangabad, Maharashtra wherein the brother of the victim was initially reluctant to lodge a complaint at the police station despite an attempt made to molest a 29-year-old intellectually challenged woman who at the time of the incident was alone in the house. A key barrier for people with disabilities in reporting the abuse, particularly women is them not having basic knowledge about sexuality that will enable them to realize that sexual assault has occurred. This is further aggravated by the fact that most of the perpetrators of sexual assault are likely to know and be trusted by the victim. This permits them to easily manipulate the person to engage in sexual behaviours, leading the victim to believe that they have consented. Disclosure may also be affected by the relationship of the victim to the perpetrator of the violence. A dependent relationship with the perpetrator, (Saxton et al., 2001) or fears of what her partner may do to her if she does disclose (Petersilia, 2001) affects the extent to which the victim can disclose the violence. Another major hurdle lies in the ability to communicate what has occurred, and there may not be the specific communication aids to facilitate communication. Lack of adequate and efficient policies and procedures to deal with disclosures and an organizational culture that does not promote sexual violence prevention may also deter disclosure. A testimony of a blind girl at a Public Hearing on Issues Affecting Women with Disabilities organized by the Jadavpur University in collaboration with Sruti Disability Rights Centre, Kolkata reveals both her plight as well as her lack of hope on the redressal mechanism I face sexual abuse regularly. I have to commute to college by public bus. I need help of others in crossing roads and even during bus rides. One day I asked a man who was standing at the bus stop to help me to get into the bus. I asked him to hold my hand and then I realised he was touching my body also. I was very nervous—I 108

Identities Embedded in our Bodies

thought if I protested he will let me go off and I will meet with an accident. You know how crowded buses in Kolkata are. This man kept on touching me in an inappropriate manner inside the bus. But I could not protest. And if I would have said anything, who would have believed? I can not see, so for me to identify him would be difficult. And others would think that he held my hands just to help me board the bus. So would they believe me? In another case, in February 2012 a hearing-impaired girl was raped by a doctor inside the premises of the Bankura Medical College in West Bengal. Although the victim’s mother lodged a complaint on the resident doctor of the hospital of having taken the victim for medical examination inside his room and raping her, the girl failed to identify the accused in the identification parade as she was not informed by the police or any concerned person what to do when she was taken inside for the same. The authorities justified the act due to their inability to communicate with the girl as she was hearing and speech impaired and illiterate as well. Alarmed at the increasing rate of sexual assault of women with disabilities the National Commission for Women in its draft of the Criminal Law Amendment Bill 2006 attempted to address the cause, but with little success. Though specified in Section 376(2) (i) of the proposed Bill which imposes a minimum term of ten years’ imprisonment that may extend to life, and a fine for the commission of sexual assault on a ‘person suffering from mental and physical disability’, there are indeed certain loopholes in its implementation. It is very evident from the statement mentioned that a woman with only mental disabilities or only physical disabilities if sexually assaulted fulfils the criteria of accessing the benefits of the clause, and not if someone suffers from both. The Bill also falls short of specifying the procedural amendments that will enable women with disabilities to easily access the complaints mechanism.

Political Participation: A Prohibited Right On political participation, the proposed law says that every person with a disability who fulfils the eligibility requirements shall be entitled to be registered as a voter and not to be disqualified from exercising his or her right to vote on the grounds of disability, irrespective of any stipulation to the contrary in any law for the time being in force. It further explains that any person with disability who is unable to cast vote in person due to his or her disability or because of admission in any establishment for treatment of persons at the time of the poll shall be entitled to vote by postal ballot, it says while directing the Election Commission to ensure that all polling stations are accessible to persons with disabilities. Despite such provisions, it is rather shocking that the political participation of 109

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women with disabilities is very low and they face multiple discriminations. With the division of gender roles being deeply ingrained in the Indian society, coupled with prejudice that women can hold governance and decision-making positions, only a small percentage of women representatives find a place in the Parliament and the State Legislative assemblies. It is also important to point out in lieu of this that although many selfhelp groups and associations of people with disabilities have been established in India, yet women with disabilities experience underrepresentation. It is extremely unfortunate that although the same structural injustices (traditional beliefs, prejudices and practices) that exist in our society and cultures affect women with disabilities in particular, as they do women in general and men with disabilities, yet they are discriminated against by men with disabilities in their own movement. Their existence is overshadowed by the dominance of men in leadership at different levels of the disability movement. In addition to these, the burden of work for women with disabilities falls squarely on the shoulders of women with disabilities themselves so that their issues can be addressed and information and resources are shared. It is rather unfortunate that in spite of their contributions in the history of movements for disability rights, issues concerning women with disabilities were largely ignored and their accomplishments minimized. Moreover even within disabled women’s organizations efforts are more focused towards organizing and advocating for women with physical or visual disabilities, with very little attention to women with other disabilities such as women with mental retardation, cerebral palsy, and mental illness even to the point of lack of access to these organizations. In certain situations, it is further worsened by their denial of access or association with these organizations. Several feminist activists have argued that the absence of women with disabilities from feminist scholarship and feminist theory has resulted in greater invisibility of disability from mainstream feminism. This has predominantly alienated the experiences of women with disabilities rather than attempting to understand the experiences. In spite of the existence of legal safeguards they are always treated as ‘special’, ‘challenged’ and ‘different’ and always marginalized in spite of having the right to enjoy the same status as the other citizens. In recent years, regardless of disability gaining recognition as a social and human rights issue, they are the most disadvantaged minority group. This is well understood by the incidence wherein during the local body elections in Chennai, the nomination of a hearing-impaired woman candidate was rejected on the grounds that ‘the rule does not allow a hearing impaired person to contest the election’. This makes us realize the extent of the pathetic condition wherein the constitutional provision that entitles women onethird reservation in the local bodies is placed before a debatable status. 110

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Architectural barriers by way of physically inaccessible venues of party offices, meeting places coupled with their inability to actively engage in campaigning, door-to-door canvassing, etc., prevents them from becoming active party workers. Even after the UN Convention on the Rights of Persons with Disabilities, which was ratified by India in October 2007 ensuring legal supports like the right to vote (Article 29), the right for recognition before the law (Article 12), the right to access information (Article 21), the right to freedom of expression and opinion (Article 21) and the right to accessibility (Article 9), it is indeed shameful that such a dismal condition prevails.

Employment: The Face behind the Mask!! The dual stigmatization of being a woman as well as being disabled pervades the field of employment for women with disabilities. There are vast disparities in the labour force participation rates of women with and without disabilities, and between women and men with disabilities. Various causes have been attributed to such disparities. One major factor is the fact that decisions regarding the lives of women in India and more so for women with disabilities are generally taken by their fathers, brothers or sons. Due to double stereotyping, they are denied work even in the areas traditionally occupied by women, like teaching, etc., since the stereotypes frame disabled women as unable to fulfil either the traditional role of a homemaker or the newer role of a wage earner. The National Centre for Promotion of Employment for Disabled People (NCPEDP) study shows that although women formed more than 50% of the professional workforce in the 119 apex-level NGOs, the percentage dropped to a mere 28.45% at the decision-making level. The data regarding women with disabilities is even more startling. Their percentage amongst professional staff was found to be as low as 4.47%! The figure dropped further to 3.71% when it came to their numbers in the decision-making bodies of these organizations. The NSSO Report on Disabled Persons, 58th Round, July–December 2002 also shows a dismal picture concerning the employment of the disabled persons in India in the various professions and sectors as shown in Table 7.1. It is evident from the data that the rate of employment is low both among main workers and marginal workers across all categories of disabilities for women. Eunice Fiorito and Jim Doherty elaborating on this issue in the book Women and Disability mentioned that the male bias, which pervades rehabilitation and vocational training schemes for people with disabilities, is also clearly reflected in male domination of decision making in rehabilitation organizations. Women who choose rehabilitation as a professional field, somewhere along the line, become abruptly conscious of 111

Employed 37.6 Self-employed 14.1 as an own account worker Self-employed 0.4 as an employer Self-employed 6.5 as helper Regular wage/ 4.8 salaried employee Casual labour 0.1 in public works Casual labour in 11.7 other types of works Unemployed 1.2

All

16.1 3.2

0.1

3.9

2.1

0.0

6.7

0.5

51.0 20.8

0.5

8.1

6.5

0.2

14.8

1.6

Male Female

112 1.0

13.1

0.1

2.9

7.5

0.4

38.4 14.4

Rural

1.3

16.4

0.2

3.9

9.2

0.5

51.7 21.4

0.4

7.7

0.0

1.2

4.7

0.1

16.8 3.0

Male Female

Rural

1.9

7.0

0.2

11.3

3.1

0.3

34.9 12.9

Urban

2.7

9.3

0.3

15.4

4.3

0.5

48.6 18.8

0.7

3.3

0.1

4.9

1.4

0.0

13.6 3.9

0.1

3.6

0.1

0.5

4.2

0.0

9.6 1.2

0.2

6.4

0.0

1.1

3.7

0.1

15.6 4.2

0.6

7.2

0.0

2.1

3.5

0.3

21.7 8.5

0.6

25.5

0.2

3.8

8.7

0.7

58.8 20.0

1.9

20.6

0.3

3.7

12.2

0.1

49.8 12.8

1.7

10.7

0.1

6.6

6.5

0.4

41.7 17.4

Mental Mental LocoMale Female Illness Retardation Visual Hearing Speech motor

Urban

Table 7.1 Distribution of Working Age Persons with Disabilities by Usual Activity Status (15 to 64 years) in 2002

0.6

12.8

0.2

3.2

8.4

0.3

33.3 8.5

Multiple

Identities Embedded in our Bodies

113 1.2

29.9

2.2

1.1 0.2

9.2

48.8

27.1

1.0

39.0 4.0

8.2

85.8

69.7

0.2

4.8 0.9

2.7

90.4

11.9 2,318

1.2

28.8

1.7

15.8 1.7

8.8

63.2

6.0 5.9 5.6 6.3 5.1 5.0 5.2 17,727 30,076 18,693 11,383 16,655 10,311 6,344

0.4

29.6

1.3

32.2 9.4

3.7

82.7

0.2

0.7

31.2

1.1

0.7 0.8

7.0

47.0

1.3

0.6

1.1

1.2

0.6

12.7 4.1

33.8 8.2

30.6

5.7

4.7

29.0

60.6

83.4

Source: NSSO Report on Disabled Persons, 58th Round, July–December 2002.

Not in labour 61.2 47.4 force Educational 6.4 7.5 Institutions Domestic duties 13.4 0.8 Domestic duties 3.5 0.7 and free collection of goods Rentiers, 1.3 1.3 pensioners, remittance recipients Not able to 30.2 30.9 work owing to disability Beggars, 0.7 0.8 prostitutes Others 5.7 5.5 Total 46,731 29,000 11.0 4,395

0.4

61.9

0.7

6.9 2.8

1.1

84.3

0.2

3.9

2.2

20.7 6.9

2.4

40.6

9.6 4.4 4,392 4,255

1.7

46.0

2.2

12.5 2.8

3.0

77.8

5.8 2,140

0.2

10.7

0.6

16.3 6.8

8.0

48.3

1.7

38.7

0.8

12.5 3.6

3.0

66.1

4.1 5.7 24,291 4,940

0.6

24.7

1.2

13.7 3.2

9.2

56.7

Identities Embedded in our Bodies

Identities Embedded in our Bodies

this situation once they reach a certain level in the hierarchy. They often join as volunteers and are very soon told how good they are with their clients. As a result, women tend to be concentrated in low- and mid-level positions. Apart from these, employer’s sexist attitudes, unequal hiring, pay, occupational segregation and promotion standards, unequal access to training and retraining, unequal access to credit and other productive resources, etc., further limit their participation in the job market. Furthermore, in addition to the prejudice and discrimination barrier, inaccessibility of the physical environment (e.g., buildings, roads, transport and toilet facilities) is a serious obstacle for women with disabilities working outside their homes. Since lack of mobility limits women with disabilities from obtaining raw materials and marketing their products themselves, engaging in piece-work activities such as weaving, sewing, basket making, is the most common form of income generation available to them. The materials are delivered to their homes and the finished products are collected by agents. There is no legal or social protection. This may subject them to unsafe materials and subjected to excessive hours of work under harsh conditions. Even where disabled women have jobs, their rights as workers may be overlooked. Faced with discrimination, little job mobility and few skills, disabled women workers may be forced to endure oppressive working conditions. Despite the most optimistic outlook for change in employment opportunities for women with disabilities, the present reality is that the best hope for productive work may lie in self-employment or group employment probably on a cooperative basis. While numerous projects exist which provide skills training for disabled women, they frequently fall short of meeting the ultimate goal of providing a means of adequate income. Having explored various allied problems engulfing the lives of innumerable women with disabilities across the topographical boundaries across the wide Indian subcontinent certainly leaves behind an imprint on our minds and this certainly paves the need to undertake more concrete initiatives, serious implementation and more intense monitoring and vigilance. It goes without a say that no initiatives can begin without involving the concerned population in preparing the layout for initiatives. Herein lies the need for organization and reorganization of self-help groups for women with disabilities thus making them aware of their rights through training in self-advocacy. It is important to bear in mind that the rights of women with disabilities should become a prime feature in the mainstream women’s movement. One of the primal failures of people has been that of not ascribing universal recognition to feminism with disability as a full-fledged academic discourse. The need of the hour is to make in-depth initiatives in order to delve deeper

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into understanding the discourse of feminist disability and not only to incorporate but address core issues both as a part of feminist disability research as well as feminist research in general. These in turn would pave the way for ensuring increased participation of women with disabilities in their communities and within disability organizations. It is imperative to educate women with disabilities about their right to vote as well as bring about greater awareness about their voting rights through the local newspapers, television channels and radio, mass media campaigns. If needed necessary assistance needs to be ensured from the presiding officer. The voter ID cards should mention the disability details of the voter to facilitate easy access to the polling booths. A permanent postal ballot system needs to be maintained for people with severe mobility problems. There should be much more awareness and greater implementation on the Rule 40 of the conduct of elections, which says that a look at the election manifestos of almost all major parties for the 2009 Lok Sabha elections reveals that all have included different schemes for the disabled.

Conclusion Women with disabilities have always been represented as incapable of attaining economic self-sufficiency independence of thoughts and initiatives, acquire education and most important have the authority over her own self. This necessitates the need to break the stereotypical mindset and restrict the hegemony of normality. Only then can one aspire to what Deborah Kent had described: If … a man finds a disabled woman attractive it is because her disability draws him to her, making her mysterious, heroic or appealingly vulnerable …. The disabled woman is often seen from the outset as a victim…Her Disability may stand for helplessness, innocence or blighted opportunity. (Women and Disability, 15) Under such a paradigm, women with disabilities can never be average, independent or even an underachiever. Despite the numerous barriers they face, it is absolutely imperative for us to imprint in our minds that women with disabilities are not passive victims. Many among them are very well aware of the discrimination they face, and though only a few may be prepared to fight for their rights. This itself is a silver lining. It is apt to mention here that ‘When you focus on someone’s disability you’ll overlook their abilities, beauty and uniqueness. Once you learn to accept and love them for who they are, you subconsciously learn to love yourself unconditionally’.

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Notes 1 ToersBijns, C. R. (2012). Gorilla Justice: Caged War Veterans, the Mentally Ill & Solitary Confinement. United States: Xlibris Corporation. 2 Anita Ghai, ‘Disabled Women: An Excluded Agenda of Indian Feminism’ Hypatia vol.17, no.3 (Summer 2002); http://wiscomp.org/peaceprints/PPJ-5-1/ PPJ-5.1-Article11.pdf. 3 http://magazines.odisha.gov.in/Orissareview/2014/April-May/engpdf/46-57.pdf 4 http://zeenews.india.com/news/north-east/constable-rapes-bru-woman-in-­ mizoram_881858.html. 5 www.deccanherald.com/content/302286/ physically-challenged-girl-raped-father. html.

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8 ACCESSIBILITY TO EDUCATION AND DISABILITY Challenging the Ableist Structures

The notion of affirmative action based upon equity, justice, accessibility, neutrality with respect to gender and/or to physical or mental disability, fairness and other liberal democratic ideals has acquired a new identity and clarification through the human rights movement. ‘Equity in Education’, from this perspective, implies a commitment of the public education system to ensure social justice. It is undeniable that the implementation of the rights-based approach to education necessitates the use of the human rights as a framework for a pedagogical theory that provides access to places of learning, tests capacity and measures success. This also makes it imperative to use the principle of human rights as an integral part of the schemes for designing, implementation and evaluation of policies. There is no denying that India has witnessed phenomenal changes in the area of education; but the main question that arises in one’s mind is ‘Does the same hold for education for the persons with disabilities’? It has instead left us to ponder over certain significant questions ‘Has the education for the persons with disabilities acquired the much-needed attention and initiative? With development in the form of globalization and industrialization taking place all around the world, do children with disabilities have adequate access to education’? At the same time it must be pointedout that raising of such questions does not necessarily imply that nothing has been done for the benefit of students with disabilities, but it only highlights the need to initiate more efforts to execute those plans. It is rather pathetic that children with disabilities still constitute one of the largest groups that fall outside the fold of the general education system.

Policies and Implementation: The Contending Frontiers The security and empowerment of children with disabilities have been the focus goal of several policies in India. Initiatives have been numerous as one traces back the historical records of various Committees and Commissions attempting to shift from the medical to the social approach and later the 117

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human rights approach upholding the principles of integration and later the inclusive policy. The National Charter for Children (2003) under Protection of Children with Disabilities (para 19), was vocal about their security but one fails to find any specific reference to educational needs of children with disabilities being met under the section Education. One finds reference to only ‘children from disadvantaged social groups’ and ‘children of varied cultural backgrounds’. This was reaffirmed later again in the National Policy for Children (2013). The National Policy for Persons with Disabilities (2006) stated clear-cut and strong policy commitments towards the education of children with disabilities in an inclusive manner. It clearly laid down that education is the most effective vehicle of social and economic empowerment. In keeping with the spirit of Article 21A of the Constitution guaranteeing education as a fundamental right and Section 26 of the Persons with Disabilities Act, 1995, free and compulsory education has to be provided to all children with disabilities up to the minimum age of 18 years and there is need for mainstreaming persons with disabilities in the general education system through inclusive education (Section II B. Education for Persons with Disabilities: Clause 20). It specified that effort will be made by the government to improve identification of children with disabilities through regular surveys, their enrolment in appropriate schools and their continuation till they successfully complete their education. It will also provide right kind of learning material and books to children with disabilities, suitably trained and sensitized teachers and schools which are accessible and disabled friendly (Section II B. Education for Persons with Disabilities: Clause 24). The Sarva Shiksha Abhiyan (SSA) (2007) has categorically addressed the concerns of children with disabilities or ‘children with special needs’ (CWSN) under the framework of ‘inclusive education’ (IE) and argued for the adoption of a ‘zero rejection policy’ so that no child is left out of the education system and aimed that education of children with disabilities should be promoted through a multi-option model of educational delivery. It mentioned that it will not only increase access but also provide these children with appropriate need-based skills in the most appropriate learning environment. Besides mainstreaming, the SSA also focused on a combination of home-based education (HBE) and alternate educational settings in order to address the educational needs of children with severe intellectual/physical disabilities. It is important to note here that although the SSA offers flexibility in implementation at the state and district levels depending primarily on the number of children identified and the resources available as an adverse effect, this has resulted in many different models across the country thus raising concerns about the quality and effectiveness of provision. Studies have shown that although the SSA has shown progress towards the inclusion of children with physical disabilities, the situation for children with intellectual and multiple disabilities remains unchanged (Lakhan, 118

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2013: 83). Besides this, in most cases, the concept of inclusive education is not defined but rather is taken as given, as a result of which the usage of the term, especially in official documents, remains unclear and confusing (Singal, 2008: 1519). Apart from the incongruities in estimates regarding the total population of people with disabilities in India, there are large discrepancies with regard to the number of children with disability (CWD) identified and enrolled between census data, school-based records through DISE (District Information System for Education), and Project Approval Board (PAB) survey aggregates used by the SSA. The picture is more baffling when one attempts to examine this across the states where the differences among identification rates are much higher than projected. While some of these discrepancies could be attributed to different definitions, perceptions and indeed training of the enumerators, they certainly raise concerns about the effectiveness and reliability of the identification procedures. These in turn have a cumulative impact on the screening, enrolment and retention of students in school. The World Report on Disability (World Bank, 2011) shows that young people with disabilities are less likely to be in school than their peers without disabilities. The gap in primary school attendance rates between children with disabilities and without disabilities in India is estimated to be 10%. In India, a survey estimated the share of disabled children not enrolled in school at more than five times the national rate, even in the more prosperous states. Even in states like Karnataka, almost one-quarter of children with disabilities were out of school, and in poorer such states as Madhya Pradesh and Assam, more than half (World Bank, 2009). Even in districts in India which had high enrolment rates (close to or above 90%) for children without disabilities, school attendance rates of children with disabilities were not found to exceed 7% in urban areas and 66% in rural areas. Most researchers attribute that since most of the special education facilities are in urban areas the participation of children with disabilities in rural areas could be much worse than what the aggregated data would imply (Porter, 2001; Singhal, 2006). Apart from the unreliability of data on educational participation of children with disabilities in terms of estimates in the school-going age group, much incongruity also exists in specifying the actual number of children with disabilities attending school. Data on children with disabilities in elementary classes collected under DISE reveals that the percentage of enrolment of children with disabilities was 1.18 at the primary level and 1.13 at the upper primary level. In 2015–16, about 2.29 million (overall ratio of girls’ to boys’ enrolment, 0.74) disabled children were enrolled in elementary classes across the country, of which 1.52 million (ratio of girls’ to boys’ enrolment, 0.71) were in primary and 0.77 million (ratio of girls’ to boys’ enrolment, 0.78) in upper primary classes (Table 8.1). 119

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Table 8.1 Enrolment percentage of CWDs in elementary education

2009–2010 2010–2011 2011–2012 2012–2013 2013–2014 2014–2015 2015–2016

Number of children with disabilities enrolled in elementary education

Percentage of children with disabilities enrolled in relation to all children in primary classes

Percentage of children with disabilities enrolled in upper primary classes

1.4 million 1.9 million 1.68 million 2.35 million 2.50 million 2.32 million 2.29 million

0.75 0.74 0.87 1.18 1.30 1.20 1.18

0.74 0.70 0.83 0.90 1.18 1.12 1.13

Source: Elementary Education in India, State report cards, 2009–2010 to 2015–2016

Table 8.2 Literacy rate among persons with disabilities Literacy rate (in per cent) of persons with disabilities of age 7 years and above with disability Rural Male

Urban Female

Male

Rural + Urban Female

Male

Female

Total

57.4 33.3 73.3 55.8 61.6 39.6 52.2 Percentage of persons of age 15 years and above with disability having the highest level of completed education secondary and above Rural

Urban

Rural + Urban

Male

Female

Male

Female

Male

Female

Total

19.8

8.2

37.1

23.4

24.3

12.6

19.3

Source: NSS Report No. 583: Persons with Disabilities in India

The picture becomes much more clear as we look intently into data furnished by some of the other sources. Specifying on the education of persons with disabilities, the National Statistical Commission (NSC, 2018) stated that 52.2% of persons with disabilities aged 7 and above were literates while 19.3% of persons with disabilities aged 15 and above had the highest educational level secondary and above (Statement 6) (Table 8.2). It further mentioned that 10.1% of persons with disabilities in the age group 3–35 years attended preschool intervention programme (Statement 7). Elaborating on the nature and type of schooling it specified that 62.9% of persons with disability in the age group 3–35 years enrolled in ordinary school while 4.1% were enrolled in a special school or not enrolled in ordinary school or were in ordinary school but were not currently attending (Statement 7). 120

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On the other hand, according to the Census of India (2011), the educational level of disabled persons was reported to be better in urban areas compared with rural areas, both for males and females. In urban areas, 67% of persons with disabilities were reported to be literate as against 49% in rural areas. Level-wise analysis reveals that in urban areas 20% have matric/secondary level education but are not graduates and 10% are graduates and more, while in rural areas, the corresponding figures are 10% and 2%, respectively. Differences in enrolment according to the nature of disability are clearly evident as in Table 8.3 and Table 8.4. One can note incongruities among the data as specified by both the Census 2011 and as in the state report cards. The National Sample Survey of Estimation of out-of-school children in the age group 6–13 years in India (2014) shows that the total out-of-school disabled children in India was reported to be 6,00,626, i.e., 28.07% as compared to 9,88,359, i.e., 34.12% reported under the NSSO (2009). However much is left to be questioned on the validity of these numbers since the figures denoting the total number of disabled children was stated as 28,97,096, which may not be the true representation of the actual numbers. A rather dismal picture for women with disabilities exists in the field of education. In a country like India where the education of girls, in general, is perceived as a liability, women with disabilities experience the challenge three times more on being perceived as a social stigma and are invariably denied access to education as is evident from the enrolment data in Table 8.5, which shows that the rate of enrolment across all grades is found to be relatively lower for the girls as compared to that of boys. Table 8.3 Comparison of literacy status of persons with disabilities by nature of disability in India Census, 2011

Type of Disability

Primary but Below below *Literate Primary Middle

In Seeing 2.66 In Hearing 2.89 In Speech 1.16 In Movement 3.27 Mental Retardation 0.62 Mental Illness 0.35 Any other 2.96 Multiple Disability 0.70 Total 14.62

0.55 0.55 0.24 0.53 0.17 0.07 0.53 0.19 2.84

0.65 0.69 0.28 0.81 0.17 0.09 0.69 0.19 3.55

Middle but below Matric/ secondary

Matric/ Secondary Graduate but below and Graduate above

0.43 0.47 0.18 0.61 0.09 0.07 0.50 0.10 2.45

0.61 0.71 0.27 0.84 0.10 0.08 0.73 0.12 3.45

0.24 0.27 0.11 0.28 0.03 0.02 0.28 0.03 1.25

Source: Table C-29, Census of India 2011 *Note: ‘Literate’ includes figures for ‘literates without educational level’ and ‘educational levels not classifiable’.

121

122

0.03 0.09 0.11 0.11 0.15 0.22 0.09 0.03 0.01 0.07 0.91

0.03 0.13 0.12 0.13 0.18 0.25 0.13 0.03 0.01 0.07 1.08

II

0.03 0.10 0.10 0.10 0.12 0.20 0.07 0.03 0.01 0.06 0.84

I 0.03 0.14 0.11 0.11 0.16 0.24 0.11 0.03 0.01 0.06 1.00

II 0.03 0.16 0.12 0.12 0.18 0.27 0.14 0.03 0.01 0.07 1.14

III

0.03 0.16 0.13 0.14 0.21 0.30 0.16 0.04 0.01 0.08 1.27

III

0.03 0.19 0.12 0.12 0.19 0.29 0.15 0.03 0.01 0.07 1.23

IV

0.03 0.18 0.13 0.14 0.23 0.32 0.17 0.04 0.01 0.09 1.33

IV

0.04 0.23 0.13 0.11 0.20 0.29 0.15 0.03 0.01 0.08 1.27

V

0.03 0.21 0.13 0.12 0.22 0.30 0.16 0.03 0.01 0.08 1.31

V

Source: Elementary Education in India, State report cards, 2015–2016 and 2016–2017

% Blindness % Low vision % Hearing Impairment % Speech Impairment % Locomotor Impairment % Mental Retardation % Learning Disability % Cerebral Palsy % Autism % Multiple Disability % with Disability

Percentage of Disabled Students to Total Enrolment

Enrolment of Children by Nature of Disability 2016–2017

% Blindness % Low vision % Hearing Impairment % Speech Impairment % Locomotor Impairment % Mental Retardation % Learning Disability % Cerebral Palsy % Autism % Multiple Disability % with Disability

I

Percentage of Disabled Students to Total Enrolment

Enrolment of Children by Nature of Disability 2015–2016

0.04 0.26 0.12 0.09 0.18 0.24 0.12 0.03 0.01 0.06 1.14

VI

0.04 0.25 0.12 0.10 0.20 0.23 0.13 0.02 0.01 0.06 1.16

VI

Table 8.4 Enrolment percentage across grade wise based on the nature of disability

0.03 0.30 0.12 0.09 0.19 0.23 0.12 0.02 0.01 0.05 1.15

VII

0.03 0.29 0.12 0.09 0.21 0.22 0.12 0.02 0.01 0.05 1.17

VII

0.03 0.31 0.10 0.07 0.18 0.21 0.10 0.02 0.01 0.04 1.09

VIII

0.03 0.29 0.11 0.08 0.20 0.19 0.10 0.02 0.01 0.04 1.07

VIII

0.03 0.28 0.12 0.09 0.20 0.21 0.12 0.02 0.01 0.05 1.13

VI–VIII

0.03 0.17 0.12 0.11 0.17 0.26 0.12 0.03 0.01 0.07 1.09

I–V

0.03 0.29 0.11 0.09 0.18 0.22 0.12 0.02 0.01 0.05 1.13

VI–VIII

All Classes

0.03 0.15 0.13 0.13 0.20 0.28 0.14 0.03 0.01 0.08 1.18

I–V

All Classes

0.03 0.21 0.11 0.10 0.17 0.25 0.12 0.03 0.01 0.06 1.10

Total

0.03 0.20 0.12 0.12 0.20 0.26 0.13 0.03 0.01 0.07 1.16

Total

Accessibility to Education and Disability

Accessibility to Education and Disability

Table 8.5 Enrolment status, gender and disability in India

2009–2010 2010–2011 2011–2012 2012–2013 2013–2014 2014–2015 2015–2016

Ratio of girls with disabilities to boys with disabilities in primary classes

Ratio of girls with disabilities to boys with disabilities in upper primary classes

Ratio of girls with disabilities to boys with disabilities in elementary education

0.73 0.75 0.72 0.72 0.72 0.71 0.71

0.77 0.78 0.79 0.80 0.81 0.80 0.78

0.74 0.76 0.74 0.74 0.75 0.74 0.74

Source: Elementary Education in India, DISE, State report cards, Analytical report—2009–10 to 2015–2016

The most formidable barrier to educational equity for girls with disabilities is their invisibility. The prejudice surrounding their ability and value continues to perpetuate the view that educating them is futile. Only a small proportion of girls with disabilities have access to opportunities for receiving education or attending training courses. Besides this, the dearth of programmes and policies explicitly addressing the educational needs of girls with disabilities and failure on the part of gender equity and disability equity programmes to serve their needs further add to their disadvantage. It is imperative to note that although there are policies and programmes addressing education for girls without disabilities it is miserable that despite the needs and associated problems being similar in nature, those with disability are seldom included. Similarly, while strong disability rights legislation over the years produced a range of efforts to promote educational equity for children who are disabled, few are gender specific and few include gender-specific components to address the unique barriers that girls with disabilities face. Apart from the aspect of gender and disability, access to education by girls with disabilities is also affected by their type of disability, the socioeconomic status of their family, their race and ethnicity, their area of residence whether urban or rural and a host of other factors. The incessant relationship between poverty and disability often acts as a significant hurdle. Poverty causes disability, particularly in women and girls and in the face of limited resources, they are more likely than their male counterparts to be deprived of basic necessities such as food and medicine. Hence disability, in turn, contributes to poverty because of the additional expenses that it can entail. Therefore, girls who are disabled are more likely than their nondisabled peers to grow up in poor families and be placed at an educational disadvantage. In impoverished families, the limited resources available will 123

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be used to educate the boys, with the expectation that they will ultimately help support the family. Girls are not likely to be educated, particularly girls who are disabled and need costly disability-related equipment or special transportation. This is more for women with disabilities in rural areas than those living in cities. Distance to school constitutes an educational barrier for many girls, partly because of safety and cultural prohibitions against females travelling unescorted. For girls with disabilities, such barriers are intensified. The architectural inaccessibility of school buildings (including stairs, narrow corridors, inaccessible desks and equipment, inaccessible bathrooms) is often a major barrier for girls with disabilities. Lack of physical accessibility, personal assistance, issues of safety and security and non-functional toilets makes it impossible for many families to send their girls with disabilities to schools. Hence although the issue of identification of CWSN has been the primary focus of the SSA and the reports note a steady increase in their numbers suggesting that there is a growing awareness of the concerns of CWSN, it is imperative that the assumptions underpinning the process of identification and assessment need to be subjected to critical verification. In both, District Primary Education Programme (DPEP) and SSA considerable attention has been given to the provision of aids and appliances. The SSA (2003) provides a one-page ‘List of aids and appliances required by children with special needs’ for four impairment types—visual, hearing, orthopaedic and intellectual. These aids and appliances are largely directed towards equipping the child’s functioning (day to day and educational), through the provision of aids such as white cane, hearing aid and thick pens. This document also notes the provision of 500 rupees to teachers to develop low-cost teaching and learning materials to meet the educational needs of CWSN in a regular classroom. While the provision of these enhances the functional capacity of many children, these statistics fail to give a complete picture. Various problems were found to be associated with the difficulty in accessing the provisions, as rehabilitative services tend to be concentrated in urban areas, and the devices given were inappropriate, difficult to repair and maintain in rural areas. There is limited awareness among parents about incomebased programmes for free aids and appliances. Some parents also find that the design of the aids and appliances provided do not help their child function effectively (Limaye, 2016). Another problem that persists is a striking gender disparity among beneficiaries of Artificial Limbs Manufacturing Corporation of India/Assistance to Disabled Persons for Purchasing (ALIMCO/ADIP), though disaggregated data by age is not available. It has been reported that the percentage of female beneficiaries of all aids and appliances and even in case of enrolment in ADIP camps conducted in schools through the SSA was found to be lower across years as evident from Table 8.6. Among the other allied issues is that since there is no system to assess the need of the individual and suitably customize the device (NDN and NCRPD, 124

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Table 8.6 Gender disparity in ALIMCO/ADIP beneficiaries Under ADIP-SSA Scheme, (6–14 years)

2014–2015 2015–2016 2016–2017 2017–2018 2018–2019

Number of Camps

Male Female Beneficiaries Beneficiaries Total

1,189 1310 783 1033

47,237 51200 47110 52864

27,467 28726 26282 27931

74,704 79926 73392 80795

Source: Annual Reports 2017–2018, MHRD, Department of Empowerment of Persons with Disabilities (Divyangjan)

2019), much of the aids and appliances distributed by the government and NGOs in camps, etc., are abandoned as they are not suitable, or are of low quality. An evaluation of the ADIP Scheme by the Planning Commission (Government of India, 2013) revealed a number of challenges have been found in due course of implementation ranging from distribution of aids and appliances, lack of adequate training in usage and maintenance. Lack of strict vigilance in provision for cost of maintenance of aids and appliances to many beneficiaries has resulted in several beneficiaries discarding aids (in case of hearing aids) or sell appliances (in case of tricycles) received by them. The Right of Children to Free and Compulsory Education (RTE) Act (2009) which specified that every child had a right to ‘full time elementary education of satisfaction and equitable quality in a formal school which satisfies certain essential norms and standards’. The Act has defined children belonging to disadvantaged groups and children belonging to weaker sections as follows: Disadvantaged Group are defined as those that belonged to the ‘children with disability, SC, ST, socially and educationally backward class or such other groups having disadvantage owing to social, cultural, economical, geographical, linguistic, gender, or such other factors as may be specified by the appropriate Government by notification’. The centrally sponsored scheme of the SSA (2001) had set time-bound targets for the achievements of Universalisation of Elementary Education (UEE). With ‘zero rejection’ as its cornerstone, the programme provided support for the inclusion of children with disabilities in general schools at the elementary level. The SSA norms were further strengthened by the RTE Act, 2009 which talks about free and compulsory elementary education to children without any discrimination on the basis of caste, gender, disability etc. Within the RTE Act one needs to note that the keywords ‘free and compulsory’ which implied those children admitted into schools that are supported by the government will not have to give any fee or undergo any expense which would otherwise prevent the child from completing elementary education. Compulsory education implied that the government 125

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and the local authorities would ensure and provide admission, attendance as well as completion of the elementary level of education (Department of School Education & Literacy, Ministry of Human Resource Development, Government of India). Hence the RTE Act promises to guarantee free and compulsory education to children aged 6 to 14 years. It is to be noted that the coming in of the RTE Act (2009) has resulted in a proportionate increase in enrolment. Besides this, it has also ensured the incorporation of more categories of children with special needs since 2012– 13 that have been counted by DISE, such as visual impairment (blindness), visual impairment (low vision), hearing impairment, speech impairment, locomotor impairment, mental retardation, learning disability, cerebral palsy, autism and multiple disabilities. It is important to note that the categories of low vision, learning disability, cerebral palsy, autism and multiple disabilities were earlier not counted through DISE data. Some of the significant areas addressed by the Act pertain to clear responsibilities of the state to map children in their communities and ensure their enrolment, retention and completion of elementary education. Moreover, since physical access is a particularly important issue for children with disabilities, in order to ensure full participation Section 6 of the Rules of the RTE Act specified that the primary school must be established within a walking distance of 1 km of the neighbourhood while for children in classes 6 to 8 schools can be established within a walking distance of 3 km. The Act also actively emphasized on the need to curtail discrimination and ensure full participation of children in education. It also advocated the need to attain the objective of formalizing education and setting standards, specified requirements for infrastructure, playgrounds, libraries, toilets and drinking water facilities, barrier-free access to all and based on the principles of universal design (p. 70), Pupil Teacher Ratios (PTRs) and trained teachers (Section 23 (2)). The rules also highlights on the need to make adequate provision of having schools within reach and as well as transport facilities since issues concerning transportation constitutes to be a major hurdle in the education of chidren Some of the other significant areas emphasized by the Act were childcentred education; a clear setting of curriculum (Section 29 (2)) by incorporating in the school curriculum supports such as physical therapies, mobility training, positioning required by some children with disabilities that would facilitate their full physical and mental development besides providing all teaching and learning materials and continuous and comprehensive evaluation. It is to be noted that the National Curriculum Framework (NCF) (2005) also recommends child-centred pedagogy to help ensure that lessons are comprehensible and engaging for all children. It is rather unfortunate that in spite of such progressive visions, inadequate implementation of the RTE Act failed to promote inclusive education. Many researchers like Bhattacharya (2010:21) maintain that although 126

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the Act is devoid of obvious segregationist terminologies, it does little to encourage inclusive education. Hiranandani and Sonpal (2010) specified that it is imperative to note that although the RTE guarantees free ­education to children between ages 6 and 14 years, it remains silent regarding the right to pre-primary education for children below the age of 6 years. Moreover, although the Act mandates inclusion of children from diverse backgrounds and abilities, it fails to specify inclusive practices that could ensure the retention of children with disabilities in mainstream schools. One finds it subject to numerous inadequacies such as the lack of adequate barrier-free infrastructural and transport facilities that have found limited implementation in the form of ramps and rails, inadequate arrangement for basic facilities like toilets and drinking water facilities or midday meals. However, it is quite astonishing at the same time that statistics from the state report cards (elementary education) reflect a quite contradicting picture. It is projected that even though only 37.33% of schools required ramps in 2015–16, provision for ramps had been provided to 82.60% of the schools. Such figures have also been shown for 2014–15 wherein although 41.05% schools required ramps provision for ramps were made available to 77.37% of the schools. This appears to be an attempt to portray a misleading positive picture regarding the availability of adequate infrastructural resources such as ramps thus justifying arguments of having ensured greater accessibility to students with physical disabilities in schools. Table 8.7 depicts the specific provisions for CWDs as per individual state RTE rules. It is important to bear in mind that these include provisions made under the state rules under the RTE Act but states could have their own specific norms regarding these parameters also. A careful and thorough analysis of the available data shows the lack of any mandatory monitoring mechanisms to ensure uniformity in the implementation of provisions. Much is hence left at the discretion of the state rules. All state RTE rules provide for safe transportation to and from school for children with disabilities except Gujarat and Uttarakhand. Amongst the states listed, Karnataka and Kerala are the only ones whose RTE rules provide for assistive devices and reasonable accommodation. Particularly Kerala is the only state whose RTE rules refer to special schools for children with disabilities. Hence huge disparities exist among the state-level implementation of inclusive education policies as well as a lack of cooperation between the state and the central governments. Although numerous recommendations have been made to ensure adequate infrastructural facilities for the PWDs the existing situation depicts a piecemeal achievement. Though it was envisaged that infrastructure in urban and rural areas would be made barrier free through appropriate schemes and programmes, very few buildings, transportation services, and 127

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other public facilities are accessible at present. Moreover, much is left to be attained despite the fact that many policies have envisaged the need to adopt adequate measures for creating a barrier-free environment and prescribed guidelines and space standards in the process. According to the Secondary Education State Report Cards—Provisional (2016–17) (National University of Educational Planning and Administration, 2018), accessible toilets are provided in less than 20% schools across 12 states. Table 8.8 shows that there is not much difference across the types of schools. Although the situation is slightly better in urban areas, especially in large, composite schools with Grades 1 to 12, almost one-fifth of the schools with Grades 6 to 12 do not have accessible toilets. This constitutes to be one of the major factors that affect poor transition rates of children to Table 8.7 Specific provisions for children with disabilities in state RTE rules

Sl. No State/Central

Transport for children Provision with of assistive disabilities Devices

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30

       X                    X  

Andhra Pradesh Arunachal Pradesh Assam Bihar Chhattisgarh Delhi Goa Gujarat Haryana Himachal Pradesh Jharkhand Karnataka Kerala Madhya Pradesh Maharashtra Manipur Meghalaya Mizoram Nagaland Odisha Puducherry Punjab Rajasthan Sikkim Tamil Nadu Tripura Uttar Pradesh Uttarakhand West Bengal Central Rules

X  X X X X X X X X X   X X X X X X X X X X X X X X X X X

Representation of parents or guardians of CWDs in SMC

SMC role in promoting Reference inclusion of to special CWDs schools

X X   X X X X      X X X X X X X X X X X X X X  X X

  X X                         X 

X X X X X X X X X X X X  X X X X X X X X X X X X X X X X X

Source: Department of School Education & Literacy, MHRD, Government of India. School Education https://mhrd​.gov​.in​/rte​_state​_rules

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middle and high schools and more so in case of girls with disabilities attending schools. A closer look at the curriculum arrangements reveals that attempts have been reduced to mere adaptations made for specific impairment groups rather than dynamic and inclusive pedagogies that can be used. Though the Act made promising statements concerning the involvement of teachers much of the efforts primarily focus on the availability of special educators while home-based education requires much to be done and survives to function on an ad hoc basis. Even though the National Council of Teacher Education (NCTE) and the Rehabilitation Council of India (RCI) are taking measures to prepare teachers for inclusive education, there is still the need for continued investment and flexible planning to address emerging issues and gaps in trained human resources. Advances in teacher education have not necessarily kept pace with the policy changes that followed the Salamanca Declaration. For example, in India, the pre-service training of regular teachers includes no familiarization with the education of children with special needs (Bines and Lei, 2007). Analyzing the achievements of the RTE 6 years following its enactment, a KPMG evaluation report (2016) highlights the challenges in the debate over the quality of learning by specifying that the government has so far focused on universal enrolment and infrastructure development, which now needs be on the quality of learning. According to the Annual Status of Education Report (2014) 50% of Class 5 students and 25% of Class 8 students are unable to read a Grade 2 reader. Similar statistics on learning outcomes in numeracy point out that pedagogy and teacher–student interactions that encourage learning through understanding and application are needed. A clear paradigm shift is evident from the stigmatizing medical approach to the medical-social in the Indian legislation as well as in The Rights of Persons with Disabilities (RPwD) Act (2016) with the latter replacing the Persons with Disabilities (PWD) Act (1995). The new Act, in contrast, reflects a shift from this charity-based model, wherein only what is feasible for the authorities is done for the PWD, to a rights-based model, where the provisions in the Act are mandated. The 2016 Act has been able to provide greater clarity into hitherto undefined constructs. For example, the definitions of discrimination, barrier, mental illness and benchmark disability have been elucidated. Hence while the former definition by the PWD Act (1995) typifies a person based purely on the degree of disability, the RPwD Act provides a holistic view of what the person’s disability could comprise, emphasizing not only on biological determinants but also on social, environmental and relational ones. Now focusing on the sphere of education, while both the Acts had provisions for free education for children between 6 and 18 years, the PWD Act allocated 3% reservation in high schools, which the RPwD Act 129

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Table 8.8 Percentage of schools with disabled-friendly toilets All Areas Rural Areas Urban Areas (%) (%) (%)

Type of school Primary School (Grade 1–5) Elementary School (Grade 1–8) Secondary School (Grade 1–12) Higher Upper Primary School (Grade 6–8) Upper Primary to Higher Secondary School (Grade 6–12) Elementary and Secondary School (Grade 1–10) Upper Primary and Secondary School (Grade 6–10) Secondary School (Grade 9–10) Secondary and Higher Secondary School (Grade 9–12) Higher Secondary School (Grade 11–12) Total

19.57 28.60 31.99 18.95 32.27

19.42 27.95 27.72 18.73 31.93

20.86 30.85 38.31 21.64 33.33

24.66

22.82

27.86

20.84

21.22

19.53

25.28 31.15

24.98 29.19

26.45 36.80

24.72 22.44

23.27 21.66

26.31 26.69

Source: Flash Statistics, National University of Educational Planning and Administration (NUEPA) 2018

had increased to 5%. These provisions are greater than those proposed in the Right of Children to Free and Compulsory Education Act, 2009, which specified that all children would receive free education from the age of 6 years until the age of 14 years. The RPwD Act also specifies 5 years upper age relaxation of PWDs in institutions of higher education. However, despite these, there remain a few debatable issues, which will be discussed later. Besides, while the RTE Act provided only for regular teachers, courts have directed the appointment of special educators, and the RCI Act requires the appointment of special educators only, to teach children with disabilities. Hence the RPwD Act under Section 17 specifies that provisions were to be made to train and employ teachers, including teachers with a disability who are qualified in sign language and Braille and also teachers who are trained in teaching children with intellectual disability and to train professionals and staff to support inclusive education at all levels of school education. In Section 16: Duty of educational institutions under the Chapter III: Education, the RPwD Act makes it mandatory for the government and the local authorities to ensure that all educational institutions funded or recognized by them will provide inclusive education to the children with disabilities and towards that end shall make building, campus and various facilities accessible, provide reasonable accommodation according to the individual’s requirements, provide necessary support individualized or otherwise in environments that maximize academic and social development consistent with the goal of full inclusion etc. Section 31 of the RPwD 130

Accessibility to Education and Disability

Act, 2016 specifically states that the appropriate government and local authorities shall ensure that every child with a benchmark disability has access to free education in an appropriate environment till he/she attains the age of 18 years. One of the major issues that arises with regard to the RPwD Act is with it specifying clause like ‘within the limit of their economic capacity and development’,1 ‘the extension of time depending on their state’,2 ‘without undue burden’3 etc. It leaves an ample room for the denial of justice and fulfilling the duties by educational institutes as well as other authorities. However, in light of this, it is to be borne in mind that accessibility should constitute the backbone of inclusion of children with disabilities and therefore accessibility of infrastructure, transport, reading materials, information, products and services must be in accessible forms as detailed under the RPwD Act and its corresponding rules. Moreover, the question that arises here is, ‘Should then inclusion be limited to the classroom/curricular aspects only’? This can be best addressed when one takes a close look at the RPwD Act that also mandates reasonable modifications in the curriculum as per individual needs of children with disabilities but in spite of this, it fails to mention this integral aspect of inclusive education that it must also apply to co-curricular activities including sports, arts and recreational activities. As compared to the PWD Act, the RPwD Act specified more specific goals aimed at inclusive education such as early detection and intervention of Specific Learning Disability (SLD) and conducting school surveys every 5 years for identifying children with disabilities to ascertain their needs and the extent to which these needs are being addressed (Section 17), provisions for setting up special schools and promoting the integration of students with disabilities in normal schools. But a critical look makes it obvious that the Act does not specify which categories of PwD can be included in inclusive education. People with moderate to severe Intellectual Disability (ID) or children requiring high support needs would not be expected to do well with the inclusive approach as they might be unable to cope with the demands of regular schooling and would need a much more targeted approach. Although there has emerged a global shift away from the schooling method of segregation or special schools to the mainstream and later inclusive schools rather unfortunately as some researchers have rightfully highlighted in most cases, the concept of inclusive education is not defined but rather is taken as a given, as a result of which the usage of the term, especially in official documents, remains unclear and confusing (Singal, 2008: 1519). Although Section 34 of the RPwD Act, 2016 made it mandatory for every government establishment to reserve 1% of the total number of vacancies for persons with benchmark disabilities arising of autism, intellectual disability, SLD, and mental illnesses, it is significant to bear in mind that the 131

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law drafter combined intellectual disability and mental illness into one category and allotted only 1%. Though the RPwD Act strongly advocated the need to make building, campus and various facilities accessible, special education zones and school complexes are contrary to the provision of neighbourhood schools that are mandated under the Act. This clearly reflects a lack of clarity in ensuring accessibility to these complexes in the absence of accessible transport by children with disabilities. There is often a misconstrued understanding of the term ‘accessibility’, thereby limiting it merely to the built physical environment when in actual terms different forms of communication and information such as websites, apps, television broadcasts, and other communication mediums and devices for the disabled remain undressed within its purview. Despite the existence of innumerable websites, software and applications, dissemination of information through the electronic mode are inaccessible to a majority of children with disabilities under the ADIP-SSA scheme (refer Table 8.6).4 Section 42 of the Act distinctly states that the government take measures to ensure that (i) all contents available in audio, print and electronic media are in accessible format; (ii) persons with disabilities have access to electronic media by providing audio description, sign language interpretation and close captioning; (iii) electronic goods and equipment which are meant for everyday use are available in universal design. In pursuant to this Act, the Ministry of Social Justice and Empowerment issued the Rights of Persons with Disabilities Rules, 2017 (‘Rules’) whereby the Accessible India Campaign or Sugamya Bharat Abhiyan, a nation-wide flagship programme was launched in 2015. However, universal accessibility through barrier-free environment and information will enable the differently abled to gain access to equal opportunity and live independently in an inclusive society. In the Indian context, education of children with disabilities continues to be the responsibility of two ministries wherein the responsibility of supporting special schools lies with the Ministry of Social Justice and Empowerment while the education for children with disabilities within the general education system is with the Ministry of Human Resource Development (MHRD). The parallel existence of various school models for children with disabilities including regular schools, specials schools and home-based education but little coordination between the ministries and departments responsible for the implementation of these schemes has risen up further complexities. This division reflects the cultural perception that children with disabilities are in need of welfare rather than equality of opportunity (World Bank, 2009) and

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tends to further segregate and shifts the focus from education and achieving social and economic inclusion to social isolation. The lack of consistency regarding educational options for children with disabilities constitutes a major area of  debate between the  RTE Act (2009)  and the RPwD Act. While the amendment of RTE (2012) highlighted on provisions for children with disabilities to enrol in neighbourhood schools and ascribes a separate category and those with severe disabilities can opt for home-based education, the RPwD recognizes the right of children with benchmark disabilities to enrol in either neighbourhood schools or special schools of their choice and does not offer guidance on homebased education. This lack of synergy between the RTE Act and the RPwD Act has been a major impediment hindering the realization of inclusive education for CWDs. This dualist control often lacks convergence between the two approaches. The two areas that have failed to be addressed by both the RTE Act and The RPwD Act are the absence of a legal framework specifying norms and standards applicable across neighbourhood school, special school and home-based education formats and absence of a coordinated authority that can enforce the norms and standards across the multiple educational settings where children with disabilities can legally be studying. It is quite obvious from the present functioning of the schools that the enforcement mechanism fails to extend to special schools under the RTE Act while the enforcement mechanism under the RPwD Act fails to mandate schools to adhere to its provisions since the mandate to derecognize schools for non-compliance of norms and standards primarily lies with the education authorities. National Action Plan for Children (2016) mentioned under its Key Priority 2: Education and Development sub-objectives 2.2, 2.6.2.7 categorically mentioned that efforts will be made to provide services to CWDs in regular schools and ensure that these are inclusive with necessary mechanisms for screening, enrolment, infrastructural arrangements, teachers, curriculum adaptations, track all out-of-school children. India has made partial progress in harmonizing its national laws with the requirements of United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). However, a major bone of contention that exists centring on the National Charter for Children (2003), RTE Act and National Policy for Persons with Disabilities (2006) is that they were both formulated before UNCRPD was adopted not being aligned with the goals of UNCRPD. Hence these are likely to create ambiguities during implementation, due to a lack of comprehensive and coherent policy goals. Numerous challenges arise from the use of a wide range of nomenclature rather than ‘children with disabilities’ itself poses a threat and offends the dignity of children.5 Besides, ambiguities regarding coordination and monitoring mechanisms, lack of comprehensive and coherent policy goals and much more are left to attain. It is quite unfortunate that despite specific goals, 133

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strategies and indicators for the education of CWDs which the National Plan of Action for Children (2016) had set to attain by 2021, the statistical figures fail to equate the set goals and targets. Higher Education has its own importance in terms of employability, political power and national development. It has now become an essential input for meeting the manpower requirements of the highest calibre in the crucial areas of national development, ensuring social justice by providing vertical mobility to deprived sections of society by making higher levels of knowledge accessible to them and, in the process, improving quality of life of the nation as a whole. (Azad, 2008: 19) Diversity prevails within the educational campuses and hence it is the primary responsibility to cater to these diverse issues. There is an urgent need for disability service providers in higher education to recognize the need for multicultural awareness and prepare themselves for pivotal role in the success of students with disabilities. The higher education stage demands formation of an independent personal and social identity. Therein emerges the need for students with disabilities to overcome the dual obstacle of academic demands combined with their disability. This calls for students to overcome several barriers concerning disclosing their disabilities, fear of being labelled and confronting their disabilities. The period had also witnessed the emergence and implementation of schemes like Teachers Preparation in Special Education (TEPSE) and Higher Education for Persons with Special Needs (Persons with a disability) (HEPSN) 1999–2000 have been implemented with an objective to develop courses for special teachers and counsellors and also to provide facilities in various forms for the persons with disability. Rather unfortunately these schemes have not been fully implemented in all the higher educational institutions. However, the HEPSN has essentially three components. First, it specified the establishment of disability units in various universities and colleges in the country, to facilitate admission of the disabled in these institutions and to provide guidance and counselling to them. These units were also meant to assist disabled graduates in seeking gainful employment. Improvement of the accessibility of these institutions by making their infrastructure and architecture more disabled friendly constituted the second component. In this regard preference for one-time grants of INR10,00,000 per university were to be given to those institutions that had enrolled the maximum number of students with disabilities. Provision of special equipment to augment educational services for students with disabilities was the third component of HEPSN. Despite all these attempts to develop the condition of persons with disabilities, their educational level is not satisfactory. Table 8.9 shows a comparative picture of persons with disabilities enrolled in higher education. 134

5 17 71 106 29 3215

8

135

129

73

198

28 8574

10090

261

68

124

30

3173 936 1173 0

3428

120

69

20

29

1472 287 296 0

13518

381

137

144

59

4645 1223 1469 0

318 43 2230

Total

Source: AISHE, MHRD, Government of India. Reports 2015–2016 to 2018–2019

57 11789

304

144

146

13

4392 250 1524 0

890 9 236

1481 129 319 0

2297 34 1994

2911 121 1205 0

2921 0 2038

860 0 198

20162 0 1840

Central University Central Open University Institute of National Importance State Public University State Open University State Private University State Private Open University Institute under State Legislature Act Deemed University Government Deemed University Government Aided Deemed University Private Others Grand Total

F

M

Total

M

Type of University

F

2016–2017

2015–2016

10288

457

49

193

7

3370 637 1125 0

2215 9 2126

M

3837

139

62

36

3

1727 225 362 0

1012 0 271

F

2017–2018

14125

596

111

229

10

5097 862 1587 0

3227 9 2397

Total

13094

320

128

111

9

4756 1506 1306 0

2633 2 2323

M

6040

195

92

48

4

2671 998 400 0

1230 0 402

F

2018–2019

19134

515

220

159

13

7427 2504 1706 0

3863 2 2725

Total

Table 8.9 Comparative table of Enrolment of PWDs in various types of universities, affiliated and constituent colleges (2015–2016 to 2018–2019) Accessibility to Education and Disability

Accessibility to Education and Disability

The hurdles at the college level were found to range from openly proclaiming not admitting students with disabilities, not being aware of the PWD Act, 1995 to lack of resources, infrastructure and trained staff. Most of the colleges and universities were found to enrol students with orthopaedic disability followed by students with visual and speech/hearing disability. This only makes it clear that only persons with minor physical disabilities, who required minimum physical assistance of any kind, got admission in colleges and universities. Women with disabilities formed only a minuscule part of the numbers enrolled in colleges and universities, making it clearly evident that they are completely neglected by our higher education system. Besides school education, higher education also continues to be a challenge for women with disabilities (refer to Table 8.10). It is clearly evident from the table that the enrolment numbers for girls were found to be considerably lower across all school grades and becomes more so in higher grades. Like men with disabilities, women also face accessibility problems; unwillingness on behalf of educational institutions to provide accommodations for disabilities; and lack of special services such as readers for blind students. In addition to the problems women with disabilities share with their male counterparts, they face additional barriers. Like non-disabled women, women with disabilities are channelled into traditionally female fields by school counsellors and they are likely to encounter even greater obstacles than non-disabled women if they attempt to pursue a career in male-dominated professions (Russo and Jansen, 1988). In addition to being channelled into traditionally female fields by educational and career counsellors, women with disabilities often receive pressure from such counsellors to pursue a career in disabilityrelated fields such as rehabilitation counselling or special education (Davis and Marshall, 1987). Russo and Jansen (1988) suggest that the combined effects of gender and disability stereotyping track women with disabilities into the most traditional female roles. As a result, women with disabilities are unlikely to have the educational opportunities that will allow them access to highly valued and well-paying professional positions. Nidhi Goyal, a disability and gender rights activist, highlighting the cause of disabled girls said that the disability movement needs to go beyond the rights-based discourse. She said that disability is not a real problem but the environment is a problem. Nidhi lamented that the disability movement has been very much fragmented and called for a need to challenge stereotypes. ‘Women with disabilities have not come out leading them into a vicious circle. It is tragic that the disabled girls are considered asexual or hypersexual and are not given sex education’, she said. These hurdles in the educational opportunities of women with disabilities glaringly point out to the fact that not mere awareness of the problems is sufficient. It indeed points out to the need to undertake certain initiatives. 136

137

332915 335641 328794

750230 765815 745153

122429 121355 119788

97142 97100 98473

219571 218455 218261

33553 33818 33607

27493 27051 29042

Girls

61046 60869 62649

Total

Boys

Girls

Total

417315 430174 416359

Boys

1567633 1519716 1352162 Higher Secondary (XI–XII)

652919 633245 567337

Total

Secondary (IX–X)

914714 886471 784825

Source: School Education in India: U-DISE Flash Statistics on 2016–17, NIEPA

2014–15 2015–16 2016–17

2014–15 2015–16 2016–17

Girls

Boys

Total

Boys

Girls

Upper Primary (VI–VIII)

Primary (I–V)

Table 8.10 Enrolment of CWSN by stage of school education, all India year 2014–2017

985834 968886 896131

Girls

2317863 2285531 2097315

Total

1488011 1471818 1354579

Boys

1110469 1093037 1023646

Girls

2598480 2564855 2378225

Total

School Education (Grades I–XII)

1332029 1316645 1201184

Boys

Elementary (I–VIII)

Accessibility to Education and Disability

Accessibility to Education and Disability

At the very outset, it is important to review implementation of existing programmes, provisions to identify factors leading to success or failure of the drive towards enrolment and retention of children with disabilities in mainstream educational settings.

Critical reflections: Considerations and Future Possibilities The  National Education Policy 2020  (NEP, 2020) outlines the vision of a new education system but does it ensure such for children with disabilities? It has already raised up several debatable issues centring around terminological confusion, school choice for children with disabilities by introducing school complexes and school rationalization policies, does not prescribe regularizing special educators as teachers, but views special education as a specialization for general teachers, standardized assessments, curricula and target-based reforms etc. However, in line with the guidelines of the UNCRPD, it is necessary that the NEP will work towards ending the exclusion of disabled children, ensures greater budgetary allocation, co-ordination across government departments and a focus on sustainable transitions to higher education and employment. As a signatory to the 2030 Agenda for Sustainable Development, India is committed to ensure equal access to all levels of education and vocational training for vulnerable children. However, children with disabilities continue to be excluded from India’s education system.  Globally there is a conscious shift away from special schooling to mainstream schooling of education for children with disabilities. In keeping view of this it should be our objective to make mainstream education not just available but accessible, affordable and appropriate for students with disabilities. It is true that by making our schools accessible to children with disabilities, we will also be able to improve the quality of education for all children which is a key objective of the Sarva Shiksha Abhiyan. At the very outset, it is important to review the implementation of existing programmes, provisions to identify factors leading to success or failure of the drive towards enrolment and retention of children with disabilities in mainstream educational settings.

Notes 1 (Chapter V: Social Security, Health, Rehabilitation and Recreation, 24. Social security, (1), The appropriate government shall within the limit of its economic capacity and development formulate necessary schemes and programmes to safeguard and promote the right of persons with disabilities for adequate standard of living to enable them to live independently or in the community. RPWD ACT, 2016). 2 (Chapter V: Social Security, Health, Rehabilitation and Recreation, 45. Time limit for making existing infrastructure and premises accessible and action for that purpose—(1). Provided that the central government may grant extension of

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time to the states on a case-to-case basis for adherence to this provision depending on their state of preparedness and other related parameters. 3 (Chapter I: Preliminary: (y) ‘reasonable accommodation’ means necessary and appropriate modification and adjustments, without imposing a disproportionate or undue burden in a particular case, to ensure to persons with disabilities the enjoyment or exercise of rights equally with others). 4 Aids under the ADIP-SSA scheme includes devices, appliances, aids, software etc. 5 The Third & Fourth Combined State Report on UNCRC uses the terms ‘differently-abled’ (preface point 5), ‘children with special needs’ (p. 18) and ‘children with disabilities’ (p. 60). Children with disabilities are addressed in the Ministry of Human Resource Development, India as ‘children with special needs’.

139

9 ‘OUR IDENTITY, OUR VOICE’ The Evolving Face of Disability

Narrative: Debate between the Normate and the No-normate To define ourselves, name ourselves, speak for ourselves instead of being defined and spoken for by others. (Lorde, 1980/2006: 43) Disabled people have been spoken about, and spoken for, but rarely listened to. (Sherry, 2005: 16) No body, no voice; no voice, no body. That’s what I know in my bones. (Mairs, 1996: 96)

Understanding and addressing disability has never been a simple linear process! This becomes clear as Meekosha had stated: ‘The normal mind cannot encompass a difference so profoundly embedded in its/our sense of the “normal” and it’s silenced Others (those who are not the part of the taken for granted everyday world of the dominant cultures)’ (1998: 161). Moreover, as Beresford had mentioned ‘The greater the distance between direct experience and its interpretations, then the more likely resulting knowledge is to be inaccurate, unreliable and distorted’ (2003: 4). Ato Quayson, author of Aesthetic Nervousness: Disability and the Crisis of Representation (2007) states that impairment is ‘automatically placed within a social discourse that interprets it and “disability” is produced by the interaction of impairment and a spectrum of social discourses on normality that serves to stipulate what counts as disability in the first place’ (p. 2). Making the distinction between impairment and disability still reifies the notion of a disabled subject who does not meet the criteria of normality. Elaborating on debatable issues centring normate and non-normate Garland Thomson (1997) indicates that: the term normate usefully designates the social figure through which people can represent themselves as definitive human beings. 140

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[But peel] away all the marked traits within the social order at this historical moment, what emerges is a very narrowly defined profile that describes only a minority of actual people. (1997: 8) Beauvoir (1989) has stated that ‘To be present in the world implies strictly that there exists a body which is at once a material thing in the world and a point of view toward this world’ (p. 7). Similarly, Shildrick (2000) stated that ‘what counts as normative … is always caught up in historically and culturally specific determinants’ (p. 307). Reiterating the imposition that the label of normalcy entails within its ambit Ghai (2015) asserts As disabled persons, we are products of an ideology of normalcy where communication of messages of the able body is a constant in any society. As a result, a disabled person is constantly in a mental state of deferral, awaiting the day the body will not just be mended but cured. Until then, the disabled tend to impersonate the able-bodied. They are considered disembodied as it is implicit that running away from the body will act as disruption towards those incorporating qualities of social demeanour. (p. 2) Sharing her own life experiences Ghai specified that Thus, during my growing years (and often now as well), I have been constantly reminded of this sense of lack. With a body that was/is socially stigmatized as ‘the Other’ and labeled as disabled, the dilemma had been about whether to situate myself in a ‘positive mind’ or a negative body’ … I just wanted to ‘pass’ as a ‘normal’ person. (pp. 11–12) Perfect able-bodiedness and ‘normalcy’ are the desired state of existence for both people with and without disabilities and also constitute a ground for experiencing fear and anxiety. One finds reference to this in the works of Shakespeare (1994) who mentioned that non-disabled people ‘project their fear of death, their unease at their physicality and mortality onto disabled people, who represent all these difficult aspects of human existence’ (p. 298). Similar arguments were also projected by several disability writers. Hughes (2000) furthered this argument by stating that The first is fear of physical frailty, bodily difference and social vulnerability that is projected onto the disabled other and the second is the process by which the social distancing associated with projected 141

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fear of frozen onto a binary of being that embodies a hierarchy of existence. Ironically, the ontological insecurity of the non-disabled identity is the original sin that pushes disabled people to the margins of the human community. (p. 560) Darke (1994) also pointed to the ways that ‘the abnormal are created by a specific medical group so as to reinforce the powers taken to enforce normalcy’. With regard to focus on normalcy, Titchkosky and Aubrecht (2015) mentioned that ableism tends to overlap with racism, sexism, and ‘other forms of human diminishment that position some humans on the edges of belonging’ (p. 131). Foucault (1981/1976) through his writings had clearly pointed out how within a discourse, there exists ‘subjects’—figures who personify the particular forms of knowledge which the discourse produces—as well as a place for the subject—i.e., the reader or viewer, who is also (even if unaware) ‘subjected to’ discourse. Mills (1997) also maintained that discourse ‘structures both our sense of reality and our notion of our own identity’ (p. 15). There have been paradigm shifts and different theoretical standpoints that have been established within the disability discourses. While Hevey critiqued those representations that frame disability as ‘tragedy’ Mills (1997) (i.e., ‘traditional representations [as] impairment representation [with] impairment meaning flaw’ (1993: 117), Mitchell and Snyder (1997), Davis (2002) and Garland-Thomson (1997) have justified disability representations as ‘different’ and ‘extraordinary’. The invisibility of disability identity necessitated the need to adopt a nontragic view of disability and impairment all over the world which encompasses positive social identities, both individual and collective, for disabled grounded in the benefits of lifestyle and life experiences of being impaired and disabled (Swain and French, 2000: 569). However, within this context also it is important to understand whether the homogeneity of the category of people with disabilities and the disability movement genuinely identify and address all who come under its universal category constituency. For instance, it is rather dismal that the disability movement itself fails to adequately address mental illness and the identity of women with disabilities and fails to hold attention within the very purview of feminism. The feminist theory arises from one of the most significant problems with feminism’s premise that ‘the personal is political’. As Charlotte Bunch admits, In looking at diversity among women, we see one of the weaknesses of the feminist concept: that the personal is political. It is valid that each woman begins from her personal experiences and it is important to see how these are political. But we must also recognise that our personal experiences are shaped by the culture 142

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with all its prejudices. We cannot therefore depend on our perception alone as the basis for political analysis and action—much less for coalition. Feminists must stretch beyond, challenging the limits of our own personal experiences by learning from the diversity of women’s lives (Bunch, 1988: 290). Wendy Brown argued that identity politics becomes ‘invested in its own subjection’, feasts on ‘political impotence’, and descends into a melancholy based on a ‘narcissistic wound’ (1995: 71–72). Hence there is the need to identify individual identity needs as well as collective identity needs of a group in order to address differences and work towards radical transformation. Brown further stated that ‘Politicized identity thus enunciates itself, claims for itself, only by entrenching, restating, dramatizing, and inscribing its pain in politics; it can hold out no future- for itself or others—that triumphs over this pain’ (p. 74). Several others maintained that hermeneutical suspicion about those teleological tales that tend to flatten difference and heterogeneity, whether wittingly or unwittingly, in the name of normalization and it is such normalization, through an ableism lens, that may derive from a normative standard grounded in able-bodied ideals. Historically due to lack of scope for people with disabilities to have control over their own representation it projected a discriminatory form of representation. However, contemporary disability studies seek to explore, expose and reconstruct the ways in which disability is socially and culturally constituted. A new paradigm shift has enabled disability to be regarded as a construct rather than a natural or moral phenomenon. Today much representation finds a way through life writing. Such narratives have enabled the possibility of addressing rare disability conditions which found little or no reference earlier. At this point, it becomes absolutely essential to understand what narratives entail within their purview. According to Connelly and Clandinin (1990) narrative is both a phenomenon and a method. Their work brings clarity and distinction to the word narrative as it is used in the context of a narrative inquiry or narrative research. As a starting point, one might consider human beings to be natural storytellers that live storied lives. As a result, the study of narrative becomes the study of human experience of the world. Further explaining the distinction between a story (referring to a phenomenon) and a method (referring to inquiry) as two distinct concerns, they specified that a ‘method’ is the pattern of inquiry whereby the researcher collects and studies the story and writes narratives of experience. ‘Story’ is regarded as the phenomenon of narrating incidences of people’s lives. Examining narrative and autobiographical narrative research on people with intellectual disability, Shakespeare (2015) mentioned that one of the defining ambitions of the disability rights movement: for people with 143

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disability to establish and deliver their own stories (Oliver et al., 2012, Shakespeare, 2015). Autobiographical narratives as a form of ‘counter discourse’ (Couser, 1997) are valued for their ability to ‘talk back’ to dominant understandings of disability as deficit (Mintz, 2007). Couser (1997, 2010) concludes that the increase of life narratives by disabled people constitutes a ‘retort’ to the ‘traditional misrepresentation of disability in Western culture generally’. Couser argued that one of the ‘social burdens’ of disability is the way it exposes the individual to ‘inspection, interrogation, interpretation, and violation of privacy’ (p. 533) whereby people with ‘extra-ordinary bodies’ are ‘required to account for them, often to complete strangers’. In response to this, disability life writing locates ‘disability as a complex social, political, and embodied position from which an individual might legitimately narrate [his/her life experience’ (p. 17). Autobiography may be regarded as a post-colonial phenomenon, a form of autoethnography, as Mary Louise Pratt has defined it: ‘instances in which colonized subjects undertake to represent themselves in ways that engage with [read: contest] the colonizer’s own terms’ (7). According to Couser, however, autobiographical works that are counter discursive are written from the ‘inside of experience’, in ways that are self-consciously political and challenge conventional meanings ascribed to disability (pp. 109–110). Challenging medical or pathology-based understandings of difference, disability and illness (Couser, 2005), autobiographical texts insist on a more nuanced and complicated understanding of disability as informed, but not determined, by lived experience. They provide important tools for ‘resisting or reversing the process of depersonalization’ of medical discourse by insisting that disability cannot be known in isolation, but rather only in relation to the person who claims it. Kleege (1999) through her work also described how even the most representational piece of art becomes an abstraction through her eyes as evident: Up close, Monet’s waterlilies are wonderfully crusty, while at a distance they seem almost liquid. I enjoy these discoveries and marvel at the artist’s skill and ingenuity. While my too-close vantage point makes representational paintings seem abstract, with abstract works I sense not only movement and energy but depth and form. (p. 94) Miller (1998) claims that life writing often provides opportunities to ‘investigate … multiple, intersecting, unpredictable, and inassimilable identities’ ( 368). Providing a new perspective to the politics of language and its underlying implications, Mairs (1996), for example, explained, First, the matter of semantics. I am a cripple. I choose this word to name me. I choose from among several possibilities, the most 144

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common of which are ‘handicapped’ and ‘disabled’. … People— crippled or not—wince at the word ‘cripple’, as they do not at ‘handicapped’ or ‘disabled’. Perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates/gods/ viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger. (p. 9) The argument that narratives constitute a comprehensive and reliable medium of communication across experiences of people with disabilities has found expression through the production of narratives such as Alzheimer’s (DeBaggio, McGowin); aphasia (Wolf); Down syndrome (Kingsley and Levitz); epilepsy (Robinson, Slater); Lou Gehrig’s disease (Robillard); Asperger’s syndrome (Willey); autism (Grandin, Williams); cerebral palsy (Sienkiewicz-Mercer); to state a few. Similarly, there have been narratives by women with disabilities who through their writings have not only challenged the intersections of ableism and sexism but also reflected upon their personal experiences from positions of pride. The parameter of these works is wide-ranging from highlighting the oppressive and liberating narratives of the lives of women with disabilities to representing ways in which the disabled female character’s body is beginning to emerge as a subject worthy of study in its own right. Some noteworthy among them include Susan E. Browne, Debra Connors, and Nanci Stern’s With the Power of Each Breath: A Disabled Women’s Anthology (1985), Harilyn Rousso, Susan Gushee O’Malley, and Mary Severance’s Disabled, Female, and Proud!: Stories of Ten Women with Disabilities (1988), Adams (1996) An American tail: freaks, gender, and the incorporation of history, Katherine Dunn’s Geek Love; Garland Thompson’s (1997) Extraordinary Bodies: Figuring Physical Disability and Keith’s (2001) Take Up Thy Bed and Walk: Death, Disability and Cure in Classic Fiction for Girls. Mitchell and Snyder in Narrative Prosthesis: Disability and the Dependencies of Discourse have demonstrated how Western culture has persistently, even obsessively, deployed disability both as a prompt and as a crutch-like prop for narrative. Prilleltensky (2004: 37) reports that studies and personal narratives of disabled adult women point to insensitive, intrusive, and sometimes damaging treatment. She says the belief is commonly held that disabled women are likely to bear disabled children and that children of disabled parents are likely to be negatively affected. These notions hinge on the perception of the ‘risk’ posed to children. Another form of discrimination that women with disabilities face is that of being considered asexual. Such an assumption related to the sexuality of women with disabilities is often the root of their abuse from their extended family or neighbourhood. Prilleltensky (2004: 41–53) notes that disabled women are no strangers to having their sexuality negated, with strong messages of motherhood and reproduction being 145

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off-limits. She points out that disabled women, in their narratives, tell of their struggles with society and family in the assertion of their sexuality and the right to motherhood. Ghai (2002) asserts in her personal narrative that in North Indian Punjabi culture though girls are allowed to interact with their male cousins, they are not allowed to sleep in the same room whereas, such prohibitions may not be found in case of the disabled girls as they are assumed sexually safe or asexual. Besides this, in most of the cases, women with disabilities are victimized by known persons primarily because of their dependency on the caregivers. Disability has been universally conceptualized as ‘a power relationship between people with impairments and non-disabled people that devalue or exclude disabled people from mainstream society’ but since social practices radically differ from one society/culture to the other, ‘the reproduction of disablement’ varies due to culture-specific differences in ‘attitudes, discourses, and symbolic representations’ (Ghosh, 2013). Western feminist disability studies offer an important framework for understanding the lived experiences of ‘bodies marked with impairment and sex’ but the ways ‘subjectivity of a disabled female body [works] in structuring notions of femininity, desirability, and sexuality can widely vary across cultures’ (Ghosh, 2013). While discussing the complexities of gender construction in India, Ghosh asserts how construction of femininity or womanhood has been shaped by ‘cultural symbols, social ideologies, and…indigenous belief systems’ (202). She argued that certain images of gendered/able bodies put forward as the norm, portray and legitimize certain bodily forms and shapes as more desirable in different sociocultural contexts. In this very context Ghosh (2010) while examining the daily lives of women with locomotor disabilities in Bengal highlighted that they are made to grow up negotiating their impaired bodies and internalizing sociocultural constructions of the ‘normal’ female body while at the same time striving to adhere to the socially acceptable ideas about a bhalo meye through different strategies of presenting a feminine self, in gait and bearing, in dress and comportment. She categorically mentions that this subjects them to, on the one hand, internalize normative ideologies about a bhalo meye and on the other, accept the material reality of their impairments while perfecting their performance as women. Further discussing the notion of bhalo meye (an ideological construct of the ideal woman) in an essay on women with locomotor disabilities, Ghosh stated that: Culturally, the concept of [bhalo meye] is a repository of all the aspirations and idealizations of the Bengali patriarchal structures that project women into an exalted status as a mother, comparing her to the goddess and nation while over constraining and subjugating her in the private domain and relegating her to a secondary status within the home and in society. (p. 59) 146

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Renu Addlakha (2013) in her discussion about body politics and disabled women shows how the sense of imperfection attached to a disabled female body releases it from the obligation of adhering to a fixed and permanent standard of desired femininity constructed by patriarchy (adheres to the ‘fixity and permanence of a socially constructed corporeality’ 224). First, these women are perceived as asexual and second, they are deemed unworthy of normal duties and responsibilities of being a good daughter, wife and mother. She extensively discusses how disabled women do not find ‘selfassurance and confidence in the functioning and attractiveness of the body’ (228). Addlakha explains that disabled women experience ‘the same physical changes, emotional anxieties and social conflicts … and sex drive’ like normal women of the same age but they have ‘greater concerns about their bodies than their able-bodied counterparts’ (227). Even Krishnaraj (2010) had stated that Feminism has not resolved the issue of the female body; is it all constructed by sociocultural practices and ideology, or, is there a female body prior to this construction? Is it all just a ‘neuter’ body, where femaleness is all what society has constructed, or, is there a female body which is a given, biologically? Elizabeth Grosz in her work Volatile Bodies has mentioned that philosophy has often reduced the body to a ‘fundamental continuity with brute, inorganic matter’ (p. 8) and further argued that one needs to engage in more complex understanding of theorization of the body as evident: the body provides point of mediation between what is perceived as purely internal and accessible only to the subject and what is external and publicly observable, appoint from which to rethink the opposition between the inside and the outside (p. 20). She argues that the body should not be understood as a receptacle package for the contents of subjectivity, but rather plays an important role in the formation of the psychic identity itself. Hence approaching the body as a mediating force between the outside world and the inside subjectivity would allow a more thoroughgoing theory of subjectivity’s relationship to materiality. Sartre (1956) in reference to this has stated that ‘by the mere appearance of the Other, I am put in the passing a judgement on myself as an object, for it as an object that I appear to the Other’ (p. 189). Furthermore, Watermeyer (2009) had mentioned that: Some losses relate directly to disability, some do not; often disability and impairment are interwoven with identity and experience in a complex narrative which renders separation or identification of ‘disability’ losses meaningless. The very danger for disabled people is that this sphere of our human experience, of our sense of self, may be rendered less admissible or possibly banished entirely from view under the host of moral imperatives exercised by medicalising society- to overcome, normalize, disguise, defear, disown, defy or otherwise void the perceived emotional trappings of disablement. (p. 99) 147

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Medved and Brockmeier (2004) maintained that narratives by which we give situation-specific answers to the questions: ‘Who am I?’ and ‘What is my life about?’ In telling such stories, ‘people give meaning to their experiences within the flow and continuously changing contexts of life … All this is done not only in narratives about the past and the present, but also about future times and places’ (p. 747). As these stories of a life are told they operate to provide a structure for our very sense of selfhood and identity. Even Brockmeier and Carbaugh (2001) held that ‘the self in time—can only exist as a narrative construction’. Similarly Watson (2000) observed that ‘the salience of embodiment can be explained in terms of the relationship that pertains between the body/self and time’. The argument that the body is a site of autobiographical knowledge since memory itself is embodied has lent support to narratives. According to Connell (1995) ‘Bodily experience is often central in memories of our lives, and thus our understanding of who and what we are’. Smith and Watson stated that ‘life narrative is a site of embodied knowledge because autobiographical narrators are embodied subjects. Life narrative inextricably links memory, subjectivity, and the materiality of the body’ (p. 37). Miller (1994) suggests that personal stories based on remembered experiences are an important site for the social construction of self in which facets of self and various identities are projected and maintained over time. Selves, like cultures according to her ‘are not so much preserved in stories as they are created, reworked, and revised through participation in everyday narrative practices that are embedded in and responsive to shifting interpersonal conditions’ (pp. 175–176). Based on narrative studies, Somers observed that: Their research is showing us that stories guide action; that people construct identities (however multiple and changing) by locating themselves or being located within a repertoire of emploted stories: that ‘experience’ is constituted through narratives; that people make sense of what has happened and is happening to them by attempting to assemble or in some way to integrate these happenings within one or more narratives; and that people are guided to act in certain ways, and not others, on the basis of the projections, expectations, and memories derived from a multiplicity but ultimately limited repertoire of available social, public, and cultural narratives. (p. 614) Couser (2002) had specified that ‘autobiography warrants study not just as all too rare first-person testimony about disabling conditions but also as potentially powerful counter discourse to the prevailing discourse of disability’ (p. 109). Hence post 1990 one comes across a wide spectrum of autobiographical works which have lent voice to persons with disabilities as 148

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evident in the works of Anne Finfer, Georgina Kleege, Nancy Mairs, Kenny Fries and others. Referring to autistic behaviour, Matthew Belamonte (2008) argued that it can be understood as a narrative drive on the part of the person with autism ‘to organize reality so that it may be epistemologically ordered and understood’, thus making the person with autism, in a way, ‘human, but more so’ (p. 173). As Caroline Walker Bynum’s (1999) work on werewolf narratives suggests, the body is in a perpetual state of transformation. Caring for her father for more than 20 years of Alzheimer’s disease prompted Bynum to investigate how we can understand individual identity as continuous even though both body and mind can and do change dramatically, certainly over a lifetime and sometimes quite suddenly. There are stories of people embracing their bodies; tales of parents and parents with disabilities with children having disabilities refusing to accept that a bright future for their children precludes disability and asserting the right to bear and keep children with disabilities; and narratives of families refusing to accept the normalization of their bodies through surgical interventions and the normalization of their desires through heterocentric laws and homophobic condemnations. These stories deserve telling, and the issues they raise demand debate and dissent. Some disability writers contend that disability arts contributions should not be simply assimilated into the ‘body’ of literature but rather the intention of much of these works are an affirmation of difference, which in itself engenders its own culture (Morrison and Finkelstein, 1996; Singer, 2001). Delin and Morrison (1996) have strongly advocated that experiences of disabled people cannot be viewed in terms of their homogeneity of experience nor taste. Lending support to this argument Couser (2002) pointed out that some writers tend to conflate disability politics with writing by and about disabled. This finds appropriate expression in the words of Milam: Writing on disability is like fine bone china—it demands a certain delicacy. Many disabled writers (or those who chose to write on our behalf) collapse in fake cheerfulness, or anti-climax- or employ a style that is icy, dispossessed, separated from the heart. A worthy writer must show us the good as well as the ghastlies—infections, aging, the unexamined hostility of society—without getting maudlin, without descending into fake heroics, without the chill of unrelieved anger. Addlakha (2001) describes the narrative of Pushpa who had received the diagnosis of undifferentiated chronic schizophrenia. Pushpa’s symptoms are considered to be severe because she does not perform the normative role of a housewife in a middle-class urban family. This includes her 149

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inability to have a child, arguments with the mother-in-law, speaking out in public, spending on useless items without taking into account her husband’s needs and her duty towards the conjugal home. She is willful and obstinate. According to Addlakha (2001: 323), Pushpa’s refusal to perform her designated role as an average housewife is re-labelled as abnormal, ill or mad. For Pushpa, her difficulties have arisen because of a difficult marriage. Pushpa remains in the ward for 3 months. Through this narrative, Addlakha brings out how in the present form psychiatric treatment in a medical setting goes against the interests of female patients. Gender and class-related biases in which the mental health personnel have been socialized prevent them from recognizing the ways in which they can discriminate against female patients (ibid. 332). Ware (2002: 143–144) argues that scholars from the humanities have begun to explore disability in an effort to expand the meaning and understanding of humanity out of which the field of ‘Humanities-Based Disability Studies’ emerged as an interdisciplinary critical genre drawing from history, literature, philosophy, anthropology, religion, medical history, rhetoric, and first-person narratives. Ware (2002: 143) suggests that although disability studies are still in its infancy, the field has yielded a breadth of writing giving it academic legitimacy. However, there are scholars who regard personal narrative as ‘too personal’ and too focused on disability as a personal or individual struggle rather than a social and political one (Mitchell and Snyder, 2000; Davis, 1995). Freeman (2006, 2011) regarded life stories as not fixed entities, but rather a malleable and self-fashioned function of the context in which they are told. It is essential to point out that there has been another perspective often ascribed to canonical writers, such as Milton, Lord Byron, Alexander Pope, Borges, and Flannery O’Connor, as disabled, thereby attributing much of their achievements emanating despite impairments. As against this approach Synder et​.a​l. (2002) strongly argued that ‘Disability led (them) to literary achievement, not as mere compensation for physical differences but as necessary re-signification of their bodies in the social register of art’ (178). In support of this, one can mention the arguments of Dajani (2001) who identifies the ‘handicap role’ as a trope often employed when someone is presented as having overcome limitations from a disabling condition (p. 198) and Ross (1997, 2001) who strongly argued that ‘one person’s attempt to fight a particular impairment becomes the benchmark story, implying that anyone else with that impairment should be battling it as well’. Further disparities in representation prevail across the disabled population such as in case of children with disability are not often viewed as experts of their own lives (Goodley, 1996; Kelly, 2005, 2007; Stalker, 2010, Flynn, 2011; Smith-Chandler and Swart, 2014; Caldwell, 2014) and more so in case of children with intellectual disability who may not be articulate 150

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in their thoughts and feelings adequately and hence may be omitted from research (Morris, 2003; Rabiee et al., 2005). Bamberg (2011) further supported those children with intellectual disabilities who cannot adhere to social maxims of cooperation and accountability in the interview process and are omitted from research. In order to overcome some of the challenges confronting the validation of narratives new and more empirical methods are being employed. Triangulation (using more than one method or interviewing more than one person on the same subject to assure validity), as well as completing reliability checks on transcripts, are being used to safeguard participants against misrepresentation of their narratives and ensure quality (Whyte, 2006). Feminists and other transformative agendas in the social sciences have also emphasized on less dominating and more relational interviewing modalities, which replicate and respect the participant’s own ways of organizing meaning in their lives (De Vault, 1999).

The Changing Face of Disability Studies: A Struggle for Inclusion Since a considerable period of time, although some aspects of identity, such as race, gender, sexuality and class have often been interrogated in relation to curriculum, disability and ableist structures have received rare consideration. Highlighting some of the emerging challenges and tensions within the field of disability studies Oliver and Barton (2000) claimed that one major problem centred around the misrepresentations among and of sociologists of health and illness over how they defined disability studies. They challenged such claims as: disability studies have ‘written the body’ out of all consideration; that it failed to represent diversity or difference and that it is anti-medicine. They also highlighted tensions between scholars working in the field of disability studies and disabled people generally. These included: the increasing gap of the lifestyles of those who have built academic careers out of the emergence of disability studies and the position and experience of disabled people generally; the tensions of satisfying the demands of membership of the academic community, including particular forms of publishing and maintaining access to, and credibility with, disabled people and their organizations in their everyday struggles. Finally, the additional pressures that academic life involves for disabled scholars in terms of seeking to achieve and maintain status in a world, which is far from inclusive in terms of conditions, relations and values. Whilst this analysis was almost a decade ago, it is still applicable to the current situation. The past few years have witnessed the emergence of disability studies as a field of study which has gained considerable attention by highlighting alternative ways of thinking about disability as a social, cultural and political phenomenon. On the contrary, it has re-conceptualized disability as a social, cultural, economic, material, historical and/or political phenomenon 151

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and has enabled us to see disability as part of human experience rather than as a medical problem (Ferguson and Nusbaum, 2012), thus ushering in a new perspective and ways of thinking about disability and special education or the education of students who learn differently than what is assumed to be normal (Valle and Connor, 2011). For example, teachers may be able to identify and change practices that oppress or marginalize students with disabilities (Ashby, 2011). Therefore, expanding the conceptualization of disability provides a framework to challenge educational policies and practices (Taylor, 2008). The very interdisciplinary framework of disability studies has helped educationists, professionals and others to view and address disability much beyond the narrow and reductionist conceptualization that limits one’s understanding of disability as a medical condition that needs to be identified, treated and overcome, which in turn, defines disability as an individual’s limitation, impairment or abnormality (Barnes et al., 1999; Davis, 1997; Johnstone, 2001; Linton, 1998; Michalko, 2002) and fails to consider social factors such as stereotypes, prejudice, discrimination and oppression (Abberley, 1995; Barnes and Mercer, 2010; Shakespeare and Watson, 1997). Much adverse to this perspective disability studies bases its arguments on the social model of disability that views disability as a social construction that has been continually reconstructed throughout history by political, economic, social, historical and cultural factors (Davis, 1997; Gabel, 2005; Michalko, 2002; Titchkosky, 2006). It is this very framework that has provided a concrete forum for both with people with disabilities as well as researchers focusing on this area to address and collectively work towards constructive solutions while addressing citizenship rights, equal opportunity, inclusion, and social justice as well as how family, education, income, financial support, employment, housing, transportation and the built environment impact those very lives (Barnes and Mercer, 2010; Oliver, 1996). In Enforcing Normalcy: Disability, Deafness, and the Body, Davis traces the origins of the functional modality of disability to the quantification of human differences and the privileging of the ‘normal man’ by Adolphe Quetelet and others in the nineteenth-century statistical movement. Davis while examining the modality of appearance specified that the primary functions of culture is a splitting, or cleaving, of consciousness into good and bad parts and in order to retain a hallucinated view of ourselves as ‘whole’, our bodies must be split along this good/bad axis. However, these are influenced by the concrete social forces, such as the commodification of personal attractiveness or demands of industrial production. It is to be noted that Davis highlights that in the nineteenth century mental illness was viewed as a fragmentation of the body’s means of communication brought on by the fragmentation of modern society. Moreover, since disability studies is an academic discipline invested in challenging traditional thinking it promotes ‘a permanent relationship of 152

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dialogue with the oppressed’ of the non-disabled with persons with disabilities (Freire, 1970). This process of redefining ‘disability’ and ‘normalcy’, by scholars in disability studies poses a potential rationale to challenge the presumed hegemony of the non-disabled which are often apparent in through pervasive and taken-for-granted policies and practices which can be uprooted and transformed by researchers engaged in disability studies. This has been aptly referred to by Hooks (1994) as the privileged act of naming: …Often affords those in power to access modes of communication and enabled them to project an interpretation, a definition, a description of their work and actions, that may not be accurate, that may obscure what is really taking place. (p. 62) This evolving change in the manifestation and active participation of people with disabilities can be clearly summed in the words of Eiesland and Saliers (1998) as: A growing literature by people with disabilities has emerged as they begin to write their own history, create their own images in literature and art, and develop their own theories of disability. These recent developments … are being integrated into teaching and scholarship in religion and theology. (p. 15) Though in less proportion but yet the past decade has witnessed the emergence of various disability studies programmes at various Indian universities that have incorporated disability studies within their curriculum structure through the establishment of the Department/School of Disabilities Studies. This has resulted in students obtaining wider exposure to a field that promotes awareness and challenges their understanding of inclusion, disability rights and disability identities as well as the impact of the framework of disability studies on philosophy, research and practices of individuals (Danforth and Gabel, 2008). This enables educational professionals who were initially trained and socialized to perceive disability as an individual medical problem or deficit to re-examine traditional practices and procedures used on a daily basis. In this context rather than merely familiarizing teachers and administrators with the need to include children with disabilities into general education classrooms, it helps to foster more in-depth deliberations and research on further support and structural reforms. It is imperative for educationists, professional and service providers to realize that there is the need to delve deep into deliberations concerning the meanings and experiences of persons with disabilities themselves and these needs to go much beyond providing mere physical access to children with disabilities into the general education classroom and general curriculum. 153

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Disability Studies: A Curricular Framework As disability studies aim to analyse disability as well as other categories, such as race, gender and sexuality through the lens of power relations and identity it is imperative that utmost care needs to be ensured in designing curriculum or course content in higher or university programmes. The programmes need to strongly address issues and objectives such as what are the effects of normalization, stigma, discrimination and violence on people with disabilities. At the same time effort needs to be made to explore how disability and differences are socially constructed, how disability intersects with other identities, how inclusive communities can be designed, activism be encouraged and theoretical models be developed. Increasing attention has been given to promote disability pride, accessibility, intersectionality and perceived differences. In order to ensure inclusion there has to be a judicious assessment of distribution of power across economic, social and political institutions, analysis of discrimination and interaction of social categories, such as race, ethnicity, social class, gender, religion, sexual orientation, disability and age, in relation to difference, power and discrimination. Some of the proposed areas that the curriculum needs to focus on are: ··

··

··

··

Theories of disability and the social model wherein the central focus should be to help the students/professionals undergoing the programme critically explore and analyze models of disability which would pave the way for further initiatives Historical approaches to people with disabilities This can provide a base for the students to critically examine the various assumptions that have shaped traditional responses and trace the shifts in paradigms by highlighting events and legislation that have affected disability rights, including the eugenics movement, the civil rights movement, etc. Community approaches, advocacy and empowerment This can require students to explore and review the interventions that would promote full participation, including empowerment and advocacy. Service delivery systems, independent living and community practice Engage students in deliberations focusing on analyzing concepts of power, inequality and influence, the need and significance of cooperative approach among diverse sectors to ensure healthy community living. This will encourage students to review existing policies and practices and build strategies for future actions.

In the Indian context, the Rehabilitation Council of India conducts M.A. Social Work in Disability Studies and Action which critically offers discourses on myriad issues such as theoretical perspectives and their application to 154

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disability social work, process of disability social work practice, persons with disability and their rehabilitation contexts, human rights, social policies and law, rehabilitation and counselling interventions, etc., to mention a few. Similarly the I Access Rights Mission (IARM), a Tata Institute of Social Sciences (TISS) initiative launched by the Center for Disability Studies & Action (CDSA) is actively engaged in working with the ecology of students with disabilities towards facilitating a disabled friendly university/campus with special focus on ‘Inclusion & Accessibility’.

Conclusion Despite efforts being made, one chief question that remains to be answered is ‘How can disability studies be used to challenge entrenched belief systems and attitudes toward the education of students with disabilities?’ The answer lies hidden within since it is only when we find out where these misconceptions and misunderstandings evolve from and begin to address them that an approach can emerge to respond to the divide between diverse fields and misunderstandings and misconceptions. This will help us revisit, with an understanding that fields do not always have to agree to develop an open dialogue and create more opportunities for collaboration and communication among the respective fields. Consequently, a disability studies framework for a postsecondary education policy would have to go ‘beyond compliance’ (Cory et al., 2003), using policy activism to move forward ‘full and meaningful access’ in all ways necessary for all students. As Ware (2001) has demonstrated, ‘daring’ to do disability studies is essential, in schools, universities and in-service staff development. Though theories circulate in universities, if they are to become reality, they must continue to be propagated among educators and in schools. By mutually developing means for the implementation of theories educators at both university and school levels can collaboratively demonstrate a commitment to change.

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Balachander, K. dir. Moondru Mudichu (The Three Knots) (1976). Haasan Kamal, Rajnikanth, Sridevi. RMS Productions. Balakrishnan R.dir. Paa (“Father”) (2009). Cast: Bachchan Amitabh, Bachchan Abhishek and Balan Vidya. Bombay: Reliance Big Pictures, MAD Entertainment and Amitabh Bachchan Corporation. (The film is based on a rare genetic condition known as Progeria and places emphasis on a father-son relationship). Bandari Kailash. dir. Apne Dushman (1975). Cast: Dharmendra, Kumar Sanjeev, Roy Reena. Bombay: Jeetandra Enterprises. Baweja Harry​.di​r. Main Aisa Hi Hoon (“I Am Just Like This”) (2005). Cast: Devgan Ajay, Deol Esha, Sen Sushmita, Vaidya Rucha. Bombay: T-Series (Narrates the story of an autistic father and his young daughter). Bhansali Sanjay Leela. dir. Black (2005). Cast: Mukherjee Rani, Bachchan Amitabh. Bombay: SLB Films. (A film about a girl Michelle who has visual, hearing and speech impairment and her special relationship with her teacher. Michelle’s reunion with her teacher after he is hospitalized for Alzheimer’s, poignantly establishes the reversal of roles). Bhansali Sanjay Leela. dir. Khamoshi (“Silence”) (1996). Cast: Biswas Seema, Patekar Nana, Koirala Manisha, Khan Salman, Helen. Bombay: SLB Films. (The story of a hearing and speech impaired couple and their talented singer daughter’s efforts to communicate her music to her parents especially). Bhansali Sanjay Leela​.di​r. Guzaarish (“Request”) (2010). Cast: Roshan Hrithik and Rai Aishwarya. Bombay: UTV Motion Pictures. Bhimsingh, A. dir. Paalum Palamum (Milk and Fruit) (1961). Cast: Ganesan Sivaji, Saroja Devi B. Saravana Films. Bhimsingh, A. dir. Santhi (Peace) (1965). Cast: Ganesan Sivaji, Devika, Rajendran S .S., Viyjayakumari, C. R. ALS Productions. Bose Satyen. dir. Dosti (“Friendship”) (1964). Cast: Kumar Sushil, Kumar Sudhir. Bombay: Shree Krishna International. (A story of two teenage boys, Ramu and Mohan, one lame and the other visually impaired who strike up a deep friendship). Desai Ketan. dir. Allah Rakha (1986). Cast: Shroff Jackie, Kapoor Shammi, Rahman Waheeda. (A gangster’s driver takes the fall for an accident, leaving his wife and child destitute).Bombay: World Cinema. Devgn Ajay​.di​r. U Me Aur Hum (“You, me and us”) (2008). Cast: Devgn Ajay, Kajol, Khanna Karan (The story explores the relationship between a couple in the light of Alzheimer’s disease. Bombay: Ajay Devgn Films and UTV Motions Pictures. Ganguly.Kaushik. dir. Shabdo (Sound) (2013). Cast: Chakraborty Ritwik, Sen Raima, Ganguly Churni, Banerjee Victor, Mukherji Srijit. Brand Value Communication. Ghose Goutam. dir. Dekha (Sight) (2001). Cast: Chatterjee Soumitra, Roy Debasree, Dutta Anjan, Halder Indrani. Angel Digital Private Limited. Gopalakrishnan, K. S. dir. Vazhai Yadi Vazhai (1972). Cast: Varalakshmi, G, Ranga Rao, S.V, Devar Oak. Chitra Productions. Gulzar. dir. Koshish. (“Effort”) (1972). Cast: Kumar Sanjeev, Bhaduri Jaya. Bombay: Premji. (A story of the struggles of a hearing and speech impaired husband and wife). Haines Randa. dir. Children of a Lesser God (1986). Cast: Hurt William, Matlin Marlee. US: Paramount Pictures (The film explores the relationship between a hearing speech teacher and a Deaf custodian a school for the deaf).

185

References

Johar Karan​ .di​ r. My Name Is Khan (2010). Cast: Khan Shahrukh and Kajol. Bombay: Fox Searchlight Pictures. (The story revolves around the life of a man with Asperger’s syndrome). Kamlani Ram. dir. Biradri (1966). Cast: Kapoor Shashi, Faryal, Pran Pawar Lalita. Prem Patraby: Shemaroo Movies. Kapoor Rahul. dir. Tom, Dick and Harry (2006). Cast: Morea Dino, Sheirgill Jimmy, Sawhney Anuj, Jaitly Celina, Sharma Kim. Kashyap Ashok. dir. Zordaar. Cast: Anand Mahesh, Anand Vikas, Gaud Jack. (The story explores the trials of a man living in Bombay with his blind and ailing mother. Bombay: World Cinema. Khan Aamir​.di​r. Taare Zameen Par (“Stars on Earth”) (2007). Cast: Safary Darsheel, Khan Aamir, Chopra Tisca, Sharma Vipin. Bombay: Aamir Khan Productions. (The film explores the life and imagination of eight-year-old Ishaan, a dyslexic child). Khosla Raj. dir. Chirag (“Light”) (1969). Cast: Dutt Sunil, Parekh Asha. Bombay: Premji. (The story explores explored the difficulties of a blind woman). Kukoonoor Nagesh. dir. Iqbal (2005). Cast: Talpade Shreyas, Shah Naseeruddin, Prasad Shweta, Karnad Girish. Bombay: Mukta Searchlight Films (About a teenage boy who has hearing and visual impairment, and fulfils his ambition of playing professional cricket). Kumar Indra. dir. Mann (1999). Cast: Khan Aamir, Koirala Manisha and Kapoor Anil. Kumar Mohan. Dir. Avataar (1983). Cast: Khanna Rajesh, Azmi Shabana. Bombay. Malhotra Siddharth P. dir. Hichki (Hiccup). 2018. Cast: Mukerji Rani, Saraf Rohit, Kabi Neeraj, Rodrigues Ivan. Yash Raj Films. Mehra Prakash. dir. Sharaabi (1984). Cast: Bachchan Amitabh, Prada Jaya, Pran. Bombay: Prakash Mehra Productions. Mukherjee Kamaleswar. dir. Meghe Dhaka Tara (Cloud Capped Star) (2013). Cast: Chatterjee Saswata, Chatterjee Ananya, Chatterjee Abir, Banerjee Rahul. Shree Venkatesh Films.  Muthuraman S. P. dir. Netrrikkan (The Third Eye) (1979). Cast: Rajnikanth, Lakshmi, Saritha, Menaka. Kavithalayaa Productions. Naik Dilip. dir. Jaydaad (1989). Cast: Kapoor Shashi, Babbar Raj, Madhavi. Bombay: World Cinema. Panicker, Renji. dir. Roudram (2008). Cast: Mammootty, Saikumar, Manju. Marikar Films. Panthulu Ramakrishnajah B. dir. Dil Tera Diwana (1962). Cast: Kapoor Shammi, Sinha Mala, Mehmood. Bombay: Padmini Pictures. Paranjape Sai. dir. Sparsh (“The Touch”) (1984). Cast: Shah Naseeruddin, Azmi Shabana. Bombay: Shemaroo. (The film revolves around the principal of a school for the visually impaired who seeks dignity for the disabled rather than pity). Penn Arthur. dir. The Miracle Worker (1962). Cast: Bancroft Anne, Duke Patty, Jory Victor, Swenson Inga. US: United Artists (The story of Anne Sullivan’s struggle to teach the blind and deaf Helen Keller, blind, deaf, and mute since infancy). Pethkar Yeshwant.  dir. Apradhi (1947). Cast: Madhubala, Singh Ram, Pandey Leela, Pran Bombay: Prabhat Films. Premlal. dir. Atmakatha (Autobiography) (2010). Cast: Sreenivasan, Shafna, Mukherjee Sharbani, Sreekumar Jagathy. Pavithram Creation. Priyadarshan. dir. Oppam (Along) (2016). Cast: Mohanlal, Anusree, baby Meenakshi, Samuthirakani. Aashirvad Cinemas.

186

References

Rai Aanand L. dir. Zero (2018). Cast: Khan Shah Rukh, Sharma Anushka, Kaif Katrina. Colour Yellow Productions and Red Chillies Entertainment. Ram. dir. Peranbu (Compassioin) (2018). Cast: Mammootty, Sadhana,  Anjali, Ameer Anjali. Shree Rajalakshmi Films. Rao T. Rama. dir. Nache Mayuri (“Mayuri dances”) (1986). Cast: Chandran Sudha. Bombay: GV Films Ltd, Neha Arts. (The film narrates the real-life story of Chandran, who despite the amputation of her leg from the knee downwards, takes up dance again and makes a comeback). Ratnam Mani. dir. Anjali (“Offering”) (1990). Cast: Raghuvaran, Revathi, Baby Shamili, Master Tarun. Bombay: Ramoji Rao. (The story of a mentally challenged girl child reclaimed by her family). Ratnam Mani​.di​r. Guru (2007). Cast. Bachchan Abhishek, Rai Aishwarya, Madhvan R, Balan Vidya, Arya Babbar, Chakraborty Mithun. Bombay: Madras Talkies. (Film based on the life of Dhirubhai Ambani). Revathy. dir. Phir Milenge (“We’ll Meet Again”) (2004). Cast: Khan Salman, Shetty Shilpa, Bachchan Abhishek. Bombay: Percept Picture Company. (The film touched on the subject of AIDS). Sajid, Samji Farhad. dir (s). Housefull 3 (2016). Cast: Kumar Akshay, Bachchan Abhishek, Deshmukh Riteish, Shroff Jackie. Nadiadwala Grandson Entertainment. Samanta Shakti. dir. Barsaat ki Ek Raat (1981). Cast: Bachchan Amitabh, Gulzar Rakhee, Khan Amjad. (The story revolves around a young blind woman). Shakti Films: United Producers. Sarmah Rupam. dir. One Little Finger (2019). Cast: D’Amico Tamela, Abhinaya, Ghosh Jeeja, Mukherjee Soyamdeb. Sarmah in association with RJ Productions International USA. Sen Asit. dir. Deep Jweley Jai (Lighting the Lamps) (1959). Cast: Sen Duchitra, Choudhury Basanta, Sanyal Pahari. Badal Pictures. Sen Aparna​.di​r. 15 Park Avenue (2005). Cast: Azmi Shabana, Sharma Konkona Sen, Chatterjee Soumitra, Rahman Waheed, Bose Rahul. Bombay: Big Screen Entertainer and Eros Entertainment. (The story explores the life of a schizophrenic woman). Sen Jaideep. dir. Krazzy 4 (2008). Cast: Chawla Juhi, Warsi Arshad, Khan Irrfan, Menon Suresh, Yadav Rajpal. FilmKraft Productions. Sen, A. dir. Paromitar Ek Din or House of Memories (2000). Cast: Sen Aparna, Sengupta Rituparna, Sohini Sengupta, Soumitra Chatterjee. Muktadhāra (Firm). Sen, D. dir. Sati (1989). Cast: Azmi Shabana, Banerjee, Arun. Sen, D. (2019, February 9). Persons with Disabilities tell their own story on celluloid, Times of India. https​:/​/ti​​mesof​​i ndia​​.indi​​atime​​s​.com​​/ente​​rtain​​ment/​​benga​​li​/mo​​ vies/​​news/​​perso​​ns​-wi​​th​-di​​sabil​​ities​​-tell​​-thei​​r​-own​​-stor​​y​-on-​​cellu​​loid/​​​artic​​lesho​​w ​ /679​​01205​​.cms. Shetty Rohit​.di​r. Golmaal 3 (sequel to Golmaal Returns 2008) (2010). Cast: Devgn Ajay, Kapoor Kareena, Warsi Arshad, Kapoor Tusshar and Talpade Shreyas. Bombay: Shree Ashtavinayak Cine Vision Ltd. Shetty Rohit​.di​r. Golmaal Returns (sequel to Golmaal: Fun Unlimited 2006) (2008). Cast: Shetty Rohit, Devgn Ajay, Kapoor Tusshar and Warsi Arshad. Bombay: Shree Ashtavinayak Cine Vision Ltd.

187

References

Shetty Rohit​.di​r. Golmaal: Fun Unlimited (2006). Cast: Devgn Ajay, Warsi Arshad, Joshi Sharman, Kapoor Tusshar and Sen Rimi. Bombay: Shree Ashtavinayak Cine Vision Ltd and K.Sera Sera. Shetty Rohit​.di​r. Golmaal: Fun Unlimited (2006). Cast: Devgn Ajay, Warsi Arshad, Joshi Sharman, Kapoor Tusshar and Sen Rimi. Bombay: Shree Ashtavinayak Cine Vision Ltd and K.Sera Sera. Sinha Tapan. dir. Wheel Chair (1994). Cast: Chakraborty Arjun, Chatterjee Soumitra, Dutta Rajatabha, Thakurta Ruma Guha. Sippy Ramesh. dir. Bhrashtachar (1989). Rekha, Charaborty Mithun, Kher Anupam. (Story of the trials of a widow and her blind daughter). Sridhar,  C. V.​ .di​ r. Saathi (Companion) (1968). Cast: Vyjayanthimala, Kumar Rajendra. Venus Pictures. Thaliath Joseph. dir. Payal (1957). Cast: Dutt Sunil, Padmini, Ragini. (Story about a young girl and her blind sister). Madra Talkies. Vohra, Chander. dir. Khilona (Toy) (1970). Cast: Kumar Sanjeev, Mumtaz, Jeetendra. Prasad Productions Pvt. Ltd. Yoganand, D. dir. Naan Vazhavaippen (I Will Sustain You). (1979). Cast: Ganesan Sivaji, Vijaya K.R, Ganesh Jai, Rajnikanth. Asoka Bros. Vallinayagam Films.

Websites AIDWA Condemns Train Rape Incident (2002). http:​/​/pd.​​cpim.​​org​/2​​002​/a​​ug25/​​ 08252​​002​_​a​​idwa.​​htm (Visited on February 11, 2005). ALIMCO (2015). 42nd Annual Report 2014–15. Retrieved October 10, 2019, from http:​/​/www​​.alim​​co​.in​​/Writ​​eRead​​Data/​​UserF​​iles/​​file/​​Annua​​l​%20R​​eport​​14​-15​​​ %20al​​imco.​​pdf. http:​/​/fem​​inist​​sindi​​a​.com​​/wome​​n​-and​​-law/​​justi​​ce​-ve​​rma​-s​​ubmis​​sions​​/wome​​n​-wit​​​h​ -dis​​abili​​ties/​. https​:/​/tv​​.sign​​langt​​v​.org​​/show​​s​/dd-​​news-​​for​-h​​earin​​g​​-imp​​aired​/. Inclusive Media for Change. http:​/​/www​​.im4c​​hange​​.org/​​searc​​hResu​​lt​.ph​​p​?qry​​Str​=I​​ nclus​​ive​%2​​0Medi​​a​%2​0f​​or​%20​​Chang​​e. Infochange India (2012). http:​/​/inf​​ochan​​geind​​ia​.or​​g​/dis​​abili​​ties/​​backg​​round​​er​/pr​​ otect​​i​ng​-w​​omen-​​with-​ disabilities​-from​-violence​.​html (Visited on February 18, 2012). National Disability Network (NDN) and National Committee on the Rights of Persons with Disabilities (NCRPD) (2019). Parallel Report on India on the Convention on the Rights of Persons with Disabilities. Retrieved October 15, 2020, from https​:/​/tb​​inter​​net​.o​​hchr.​​org/_​​layou​​ts​/tr​​eatyb​​odyex​​terna​​l​/Dow​​nload​​ .aspx​​?symb​​olno=​​NT​%2f​​CRPD%​​2fICO​​%2f​In​​d​%2f3​​3881​&Lang​=en. NCPEDP. http:​/​/www​​.ncpe​​dp​.or​​g​/pol​​icy​/p​​ol​-br​​e​ak01​​.htm. NHRC. http:​/​/nhr​​c​.nic​​.in​/d​​ispAr​​chive​​.asp?​​​fno​=8​​90 (Visited on February 18, 2012).

188

Index

Page numbers in bold indicate tables. Abberley, P. 14 able-bodied persons: decision-making for disabled 5–6; labelling and 67; naming and 153; normalcy and 26, 141–143, 146; perfect body as benchmark 64; social constructivism and 14; staring/gaze and 65, 81 ableism 26, 97, 142–143, 145 abstraction 90–91 accessibility: in children’s literature 75, 82; in communication media 97–99, 132; digital 97–98; in education 131–132, 136; employment and 114; in journalism jobs 95; political participation and 111; in school buildings 124, 127, 131; women with disabilities and 136 Accidents of Nature (Johnson) 74 Adams, R. 145 adaptability approach 14 Addlakha, R. 5, 104, 147, 149–150 Adi Parva 30–31 Adomat, D. S. 85 ‘Adventures of Jake Jetpulse, The’ (Bradshaw) 86 Adventures of Tintin, The (Hergé) 80 Aesthetic Nervousness (Quayson) 140 Against All Odds (Kumar) 75 Agenda for Sustainable Development 2030 138 Agnew, K. 71 Alam, A. 43 Albrecht, G. L. 48 Alcoff, L. 3 Alcott, L. M. 73 Allah Rakkha 62

All-India Radio 99 Althusser, L. 18 American tail, An (Adams) 145 Anjali 53–54, 60 Anusasana Parva 33–35 Apne Dushman 62 Apradhi 62 Aquinas, T. 88 Arangetram 59 Arizpe, E. 84 Arthashastra 38 Artificial Limbs Manufacturing Corporation of India/Assistance to Disabled Persons for Purchasing (ALIMCO/ADIP) 124, 125 Asperger’s Syndrome, the Universe and Everything (Hall) 8 assistive technologies 98, 127, 128 Aswamedha Parva 34 Atharva Veda 37 Athmakatha 60 Aubrecht, K. 142 Augustine, St. 88 Auslander, G. 27 autism 8, 66, 80, 85, 149 autobiographical narratives xiii, 144–145, 148–151, 153 Avtaar 62 Ayala, E. C. 79 Bachchan, A. (Abhishek) 55 Bachchan, A. (Amitabh) 55 Baggs, M. 83 Bamberg, M. 151 Bancroft, A. 54 Barfi 53, 55, 68

189

Index

Barker, N. C. S. 83 Barnes, C. 23, 52 Barrie, J. M. 72–73 Barsaat Ki Ek Raat 62 Barton, L. 151 Baudry, J. L. 19 Baweja, H. 66 Bazin, A. 50 Bazna, M. 41 BBC World Service Trust 99 Beauchard, D. 82 Beautiful Mind, A 62 Beauvoir, S. D. 141 Belamonte, M. 149 Bell, C. 82 Bengali cinema 56, 58–59 Beresford, P. 140 Bérubé, M. 25 Beyond Silence 54 Bhaduri, J. 53 Bhagavad Gita 35 bhalo meye ideologies 146 Bhansali, S. L. 54 Bhatt, U. 38, 46, 48 Bhattacharya, T. 126 Bhrashtachar 62 Bible, Disability and the Church, The (Yong) 49 Biernatzki, W. 88 Big Bully and M-me (Sonthalia) 76 Biklen, D. 22, 28, 71, 92 Biradri 62 Birds’ Christmas Carol, The (Wiggin) 73 Birge, S. 81 Black 53–54 Blackwell-Stratten, M. 102 blind and visually impaired: Buddhism and 44, 47; education and 126, 136; folk tales and ballads 39–40; Hinduism and 30–39; Islam and 40, 42–43; social model of disability and 6; social ostracism towards 48 Blind Lover, The 39–40 body: autobiographical knowledge and 148; control and 5; desirability and 36, 62; disability studies and 151; femininity and 146–147; ideology of normalcy and 141; impairments and 2, 10; normative male 65, 102, 152; ‘perfect’ 36, 62, 64; social constructs and 11; staring/gaze and 65 Bogdan, R. 24, 28, 67, 92 Born on the Fourth of July 62

Bose, S. 53, 55 Bradshaw, L. 86 Brecht, B. 19 Briant, E. 93 Brockmeier, J. 148 Bromme, L. G. 76 Bronfenbrenner, U. 15 Bronte, C. 72–73 Brown, B. 84 Brown, W. 143 Browne, S. E. 145 Buddhism 44–48 Bunch, C. 142 Burnett, F. H. 72–73 Burns, S. 27 Burnt-Out Case, A (Greene) 71 Bynum, C. W. 149 Cambridge Guide to Children’s Books in English, The (Agnew and Partridge) 71 Carbaugh, D. 148 Catch that Cat! (Viswanath) 76 Census of India 121 Center for Disability Studies & Action (CDSA) 155 Central Board of Film Certification (CBFC) 69 Centre for Internet and Society (CIS) 97 Chandran, S. 53 Charaka Samhita 34 Children of a Lesser God 63, 66 children’s literature: criteria for evaluating 79; disability representation in xii, 26, 70–87; disabled as vile characters 72–73; ethnical norms in 79; graphic novels 82–85; ideology and 84; Indian 74–77; intellectual disability in 74; saintly invalids in 73; submission to misfortune in 73; sympathy for disabled in 72–73; visual literacy and 84 children with disabilities (CWD): accessibility and 131–132; aids and appliances for 124–125; curriculum adaptations 129; educational policy and xiii, 117–118, 125–126; education and 118–121, 122, 123, 123, 124–134, 137, 138, 152, 155; enrolment percentage based on nature of disability 122; enrolment percentage in elementary education 120; enrolment status and gender

190

Index

123; intellectual disability and 150–151; literacy rate among 120, 120; representation and 150–151; research and 151; RTE Act provisions for 127–128, 128, 133; school attendance rates 119–121; schools with disabled-friendly toilets for 130 children with special needs (CWSN) 118, 124, 129, 137; see also children with disabilities (CWD) Chirag 66 Choudhury, N. 107 Chow, R. 20 Christianity 48–49 Christmas Carol, A (Dickens) 24, 72 Ciftci, A. 43 cinema: Bengali 56–59; Bollywood and 62, 66; clarity of purpose in 19; codes in 17; convention in 50; culture and 17–19, 51; disability and punishment in 29–30, 59–62; disability as dependence in 62; disability as plot device in 61–62, 64; disability representation in 16–17, 50, 52–69; disablist language in 63; discrimination and 60–61; Hindi films 53–56; ideology and 17–19; knowledge effects 18; Malayalam 59–60; masculinity and 65–67; mental illness depictions in 57–59; moral standards and 51; Other and 61, 63–64; patriarchal order and 65; reflections of reality in 51–52; rehabilitation of people with disabilities in 67; signifying strategies in 17; stereotypes in 16, 61, 64; Tamil 59–60; women with disabilities in 60, 62–63, 66 Claiming Disability (Linton) 23 Clandinin, D. J. 143 Clumsy (Spillman) 77 comics: disability representation in 77–78, 80–83, 86; disfigurement as sign of evil 80; manga 26, 83; multimodality and 78; post-traumatic stress disorder and 81; structure and 81–82 Communication Research Trends (Biernatzki) 88–89 conflict perspective 15 Connell, R. 148 Connelly, F. M. 143

Connors, D. 145 Constructions of Disability (Tregaskis) 11 Cooley, C. H. 2, 65 Coolidge, S. 72–73 Couser, T. 24, 144, 148 Creamer, D. B. 49 Critical Disability Theory (Devlin and Pothier) 11 Crow, L. 9 culture: cinema and 17–19, 51; disability and exclusion in 22–23, 52; literature and 21; media ecology and 89, 99–100; Other and 52; religion and 88–89; response to impairment 52; signifying systems and 21; social representation and ix, xi; staring/gaze and 65; stereotypes in 70; women with disabilities and 145–146 Cultures of Representation (Fraser) 52 Dajani, K. F. 150 Dalal, A. K. 36 Dale, J. 78 Danforth, S. 9 Darke, P. A. 141 Daruwalla, N. 105 Davidson, M. 24 Davis, L. 8, 24, 152 Davis, L. J. 142 deaf and hearing impaired: in Buddhism 44; in cinema 53–55, 63, 67, 71, 74; in comics 80, 82–83; communication with 67; in Hinduism 33–34, 37; in Islam 42–43; language of disability and 7; sexual assault and 105 Deepak, S. 107 Deep Jweley Jai 58 Defeat of Mara, The 39 Dekha 59 Delin, A. 149 Dellassoudas, L. 48 developmental disabilities 80 Devlin, R. 11 Dhammapada 46 Dhar, P. 77 Dhir, S. 76 Dickens, C. 24, 72 Dīgha Nikāya 46–47 Dil Tera Diwana 62 disability: adaptability approach and 14; charity model of 27; conflict perspective 15; defining 10–11,

191

Index

13–14, 153; discourses of ix, 20, 140, 142, 144; disfigurement as sexual punishment and 36, 62; epidemiological approach and 14; functional perspective 15; gain and 83; as identity category xii, 1, 57, 74; versus impairments 9, 140; interactionist perspective 2, 65; language of 7–12; medical model of 2, 4, 13, 27, 68; patriarchal order and 65; postmodernism and 3; power relations and 23, 64, 154; psychoemotional dimensions of 2; social barriers model of 6; social creationist approach 14; social model of x, xi, 2, 5–6, 8–11, 13–16, 23, 65, 71, 152; social representation and xi, xii, 7; systems model of 15; theological history and 12 disability-first language 9–10 Disability in Comic Books and Graphic Novels (Foss et al.) 78 disability language 7–10 disability oppression 25, 65 disability politics 149 disability representations: as atmosphere 80; Buddhism and 44–48; in children’s literature 26, 70–74, 78–87; Christianity and 48–49; in cinema 16–17, 50, 52–69; in comics 77–78, 80–83, 86; as dependence 61–62; developmental disabilities and 80; as disequilibrium 61; disfigurement as sign of evil 80; in folk tales and ballads 39–40; gender and 66–67; in graphic novels 82–83; Hinduism and 29–39; importance of realistic 78–79; in Indian children’s literature 74–77; intellectual disability and 74; Islam and 40–44; in literature 21–26, 30–32, 70; as maladjustment 61–63; in manga 83; in media 19–20, 22–23, 25–28, 64, 67–69, 91–96; media and 97–98; as plot device 61–62, 64, 86; post-traumatic stress disorder and 81; as punitive 29–30, 59–63; saintly invalids and 73; stereotypical 8, 16, 61, 64, 70, 92; sympathy and 72–73; vile characterizations 72–73; of women in cinema 60, 62–63, 66–67 disability rights movement 143–144

disability studies: autobiographical narratives and xiii, 144; concept of disability in 9, 11, 143; curricular framework 154–155; feminist 146; gender inequality and xiii, 101; humanities-based 150; identity-based 24; inclusion in 151–155; interdisciplinarity and 152; intersectional approaches to 24–26; metaphorical representation and xiii; reconceptualizations in 151–153; religion and 48; rights-influenced approaches to 24 disability theory 8, 11 Disabled, Female, and Proud! (Rousso et al.) 145 discrimination: categorization in children’s literature 70–74; cinema and 52, 60–63; disability-first language and 9; education and 125– 126; employment and 114; gendered 26, 101–104, 110, 145–146, 150; institutional 14; in media 96; Muslim communities and 43; persons with disabilities and 11, 14; as public problem 91 DISE (District Information System for Education) 119, 126 District Primary Education Programme (DPEP) 124 Doherty, J. 111 Dolmage, J. 78 Doordarshan TV 99 Dosti 53, 62 Dostoevsky, F. 71 Duke, P. 54 Dunn, K. 145 Durkheim, E. 15 Dyches, T. 79 Dyches, T. T. 85 Eagleton, T. 21 Eco, U. 17 education: accessibility and 117, 131–132, 136; aids and appliances for 124–125; child-centred pedagogy 126; children with disabilities and 118–120, 120, 121, 123–128, 128, 129–134, 137, 138, 152, 155; curriculum adaptations 129; disability types and 122, 123; enrolment percentage based on

192

Index

nature of disability 122; enrolment percentage in elementary education 120; girls and women with disabilities 121, 123, 123, 124; higher education 134, 135, 136; home-based 118, 129; inclusion in 118–119, 126–127, 130–131; literacy rate among persons with disabilities 120, 121; national policy for 129–133, 138, 139n5; persons with disabilities and 117, 121, 134, 135, 137; RTE Act and 125–128, 128, 130, 133; schools with disabledfriendly toilets 130 Eiesland, N. L. 23, 48–49, 153 Eisenstein, E. 96 El Deafo (Bell) 26, 82 Ellis, K. 97 Ellul, J. 90–91 Embodied Limits (Creamer) 49 employment 111, 112–113, 114–115 Encounters with Strangers (Crow) 9 Enforcing Normalcy (Davis) 24, 152 EPathshala 96 epidemiological approach 14 Epileptic (Beauchard) 26, 82 Ewick, P. 22 Extraordinary Bodies (GarlandThomson) 145 Farber, B. 15 Faulkner, W. 71 feminist scholarship 110, 114–115, 142–143, 146 15 Park Avenue 54 films see cinema Finfer, A. 149 Finkelstein, V. 5–6 Fiorito, E. 111 Fleras, A. 20, 26 Flowers for Algernon (Keyes) 71 Flute in the Forest (Bromme) 76 folk tales and ballads 39–40 Foss, C. 78, 83 Foucault, M. 3–4, 23, 64, 142 Fraser, B. 52 Fraser, N. 1–2 Freak the Mighty (Philbrick) 74 Freeman, M. 150 French, S. 6 Fries, K. 149 functional perspective 15

Gabel, S. 9 Ganguly, K. 58 Garland-Thomson, R. 11, 24, 26, 65, 81, 83, 103, 140, 142, 145 Gauri 59 gaze: abstraction of knowledge and 18; body and 65; concept of stranger and 4, 64–65; disability oppression and 65; on disabled people 4, 64; impact of 63–69; institutional domination and 64; Othering and 77, 81; selfsurveillance and 4, 64 Gee, J. P. 71 Geek Love (Dunn) 145 gender: bivalent collectivity and 1; construction of femininity 146; disability and 8–9, 11; disability studies and xiii, 101; disfigurement as sexual punishment and 36, 62; enrolment status and disability 123; masculinity and 65–66; patriarchal order and 66; see also women with disabilities gender roles 102–104, 110 Ghai, A. 35, 103, 141, 146 Ghatak, R. 58 Ghose, G. 59 Ghosh, J. 56 Ghosh, N. 105, 146 Goffman, E. 3, 6, 23 Gold, N. 27 Golding, W. 72 Golmaal 3 62 Gordon, A. 101 Goyal, N. 136 graphic novels 82–85; see also comics Gray, J. W. 78 Greene, G. 71 Grosz, E. 147 Guidelines on Indian Government Websites 98 Guru 66 Gusfield, J. 91 Guzaarish 66 Hall, K. 8 Hall, S. 17 Haller, B. 27–28, 61, 63, 92 Handbook of Disability Studies (Albrecht) 48 Harnett, A. 62 Harrison, D. 27

193

Index

Harry Potter and the Sorcerer’s Stone (Rowling) 22, 71 Harry Potter series (Rowling) 72 Hatab, T. A. 41 Hayes, A. 15 Heart is a Lonely Hunter, The (McCuller) 71 Heidi (Spyri) 72 Heim, A. B. 79 Heins, E. 85 Helping Hand, A (Dhar) 77 Hergé 80 Hevey, D. 142 Hichki 55 higher education 134, 135, 136 Higher Education for Persons with Special Needs (HEPSN) 134 Hindi films 53–56 Hinduism: bad karma and 37; deformity and evil in 39; disability and 29–40; disability as retribution of sins 36–37, 39; medical/charity approach and 31, 34–35, 38; see also Mahabharata; Ramayana Hiranandani, V. 127 History of Sexuality, The (Foucault) 23 home-based education (HBE) 118, 129 Hooks, B. 153 Hornby, G. 15 Housefull 3 62 House of Memories 57 Hugemark, A. 2 Hughes, B. 141 Hugo, V. 35, 72 Human Rights Law Network (HRLN) 105 Humiliation of the Word, The (Ellul) 91 Hunchback of Notre-Dame, The (Hugo) 72 Hunt, P. 84 Hurt Go Happy (Rorby) 74 “I access” rights mission (IARM) 155 I am Sam, Main Aisa Hi Hoon 66 identity politics 142–143 Identity Politics Reconsidered (Alcoff et al.) 3 Idiot, The (Dostoevsky) 71 impairment: assistive technologies for 98, 124; in cinema 54, 60; cognitive 71; in comics 77; defining 10; versus

disability 9, 140; discourses of 140; education and 126, 128, 136; gender and 146; lack of mobility as 14; in literature 72; in media 64, 68, 95; religion and 48; social response to 52, 140, 142; systems model of 15; violence against women and 105–106 inclusive education (IE) 118–119, 126–127, 131 Indian films: Bengali 56–59; disability representation in xi, xii, 53–60; Hindi 53–56; mental illness depictions in 57–59 Indian Newspaper Society (INS) 69 Inoue, T. 83 intellectual disability 74, 143, 150–151 interactionist perspective 2, 65 Iqbal 53–54 Irwin, M. 80 Islam 40–44 Jack and Jill (Alcott) 73 Jacobs, A. 81 Jane Eyre (Bronte) 72 Jansen, M. A. 136 Jaydaad 62 Johar, K. 55 Johnson, H. M. 74 Johnson, W. 90 Joseph, A. 93 journalism: coverage of disability issues in 91–94; disability representation in 27–28, 91–96; inclusive language use 95; news gatekeeping and 27; public service and 20; see also media Kafer, A. 26 Kanchanmala 39–40 Kanna Panna (Whitaker) 75 Karasik, P. 82 Karthik, L. 75–76 Katju, M. 68, 92 Kautaliya 38 Keith, L. 73, 87, 145 Keller, H. 63, 66 Kent, D. 63, 115 Kesey, K. 71 Keyes, D. 71 Khamoshi 53–54, 67 Khan, A. 55 Khan, S. 54 Khilona 60 Kim, A. 7

194

Index

King, S. B. 44 Kittu’s Very Mad Day (Udassi) 75 Kleege, G. 144, 149 Koi Mil Gaya 67 Koirala, M. 54 Korzybski, A. 90 Koshish 53, 62, 67 Kracauer, S. 51 Krazzy 4 62 Krishnaraj, M. 147 Krotz, F. 89 Kumar, R. 75 Kumar, S. 53 Kunz, J. L. 20, 26 Labio, C. 81 Lagaan 62 Lakra, D. 94 Lee, H. 71 life writing xiii, 143–145, 148–150, 153 Linton, S. 23 literature: cultural discourse and 21–23, 25–26; disability representation in 21–26, 30–40, 70, 85; folk tales and ballads 39–40; gendered discrimination and 26; identity groups and 26; normalcy concept in 24; politics and 21; social reality and 21; stereotypes in 22, 25, 71; see also children’s literature; Mahabharata; Ramayana Little Men (Alcott) 73 Lorde, A. 140 Lord of the Flies (Golding) 72 Luther, M. 88 Mahabharata: Adi Parva 30–31; Anusasana Parva 33–35; Aswamedha Parva 34; disability representation in 30–38, 61; negative representations of disability in 35–36; Parvas 32–33; Sabha Parva 31–33, 37; selfabnegation in 36 Mairs, N. 140, 144, 149 Malayalam film 59–60 manga 26, 83; see also comics Manhood of Humanity (Korzybski) 90 Manjoo, R. 105 Mann 66 Manya Learns to Roar (Rao) 75 Margarita with a Straw 53, 55 Marriot, S. 84 masculinity 66, 102

Mayer, J. P. 51 Mays, J. 8 McCuller, C. 71 McLuhan, M. 90 McRuer, R. 26 McTaggert, J. 84–85 Mead, G. H. 2–3, 65 media: ableism and 97; accessibility and 97–99; coverage of disability issues in 68–69, 91–94; disability representation in x, 19–20, 22–23, 25–28, 64, 67–69, 91–98; disabled consumption of 64; focus on impairment 95; inclusive language use 95; knowledge production and 20, 25–28; medical disability model and 27; Other and 52; Paralympic coverage 96; public opinion and 68–69; public problems and 91; quasi-interaction and 89; social issues and 27–28; stereotypes in 25, 68, 70; underemployment of disabled in 64; website communications 96–97; see also cinema; journalism; literature media ecology xii, 88–91, 99–100 mediatization 89–90 Medved, M. I. 148 Meek, M. 72 Meekosha, H. 23, 140 Mellon, C. A. 78 Menon, B. 75 mental disabilities 3, 79, 106, 109, 117 mental illness 57–59, 108, 110, 131–132, 142, 152 ‘Metaphase’ (Reece) 86 Metz, C. 17 Miles, M. 29, 36 Miller, J. L. 144 Miller, P. 148 Mills, C. 79, 86, 142 Ministry of Human Resource Development (MHRD) 132 Ministry of Information and Broadcasting (I&B) 68 Ministry of Social Justice and Empowerment 132 minorities 3, 24 Miracle Worker, The 54, 63, 66 Mitchell, D. 24, 142, 145 Mitchell, D. T. 7 mobile applications 97, 99 modernity 3–4, 64, 89–90 Moeller, R. 80

195

Index

Mohanty, M. 106 Mohanty, S. 3 Mohapatra, S. 106 Moondru Mudichu 59 Morris, J. ix, 5, 10, 36 Morrison, E. 149 Mukherjee, A. K. 36 Mukherjee, K. 58 Mukherjee, S. 56 Murray, S. 26 My Brother Nikhil 54 My Left Foot 62 My Name is Khan 55–56, 68 Naan Kadavul 60 Naan Vazhavaippen 60 Nache Mayuri 53 Nambi, N. 77 naming 153 Narasimhan, M. C. 36 Narrative Prosthesis (Mitchell and Snyder) 24, 145 narratives: autobiographical xiii, 143–146, 148–151, 153; children’s literature and 74, 84, 86; comics and graphic novels 77, 81; counter discursive 144; disability literature and 24–25; dominant ideology and 17; identity and 148–149; knowledge production and 22; life writing 143–144; manga 83; news media and 28, 92; personal experiences and x; relational interviewing and 151 National Action Plan for Children 133 National Centre for Promotion of Employment for Disabled People (NCPEDP) 111 National Charter for Children 118, 133 National Commission for Women 109 National Council of Educational Research and Training (NCERT) 96 National Council of Teacher Education (NCTE) 129 National Curriculum Framework (NCF) 126 National Education Policy 2020 138 National Plan of Action for Children 134 National Policy for Children 118 National Policy for Persons with Disabilities 118, 133 National Policy on Universal Electronic Accessibility 98

National Research Trust Samarthyam 105 Neel on Wheels (Karthik) 76 Netrrikkan (The Third Eye) 59 Niebuhr, R. 88 Nodelman, P. 84 normalcy: bodily control and 5; compulsory able-bodiedness and 26, 141–142; defining 153; discourses of ix, xi, xii; ideology and 141; literature and 24; persons with disabilities and 140–141; power structure and x; social enforcement of 26 NSSO Report on Disabled Persons 111 Of Mice and Men (Steinbeck) 70–71 Ōima, Y. 83 Olien, C. N. 91 Oliver, M. 10–11, 13–14, 151 Olney, M. F. 6 O’Malley, G. 28, 145 Omkara 62 One Flew Over the Cuckoo’s Nest (Kesey) 71 One Little Finger 56 Ong, W. 88, 90–91 Oppam 60 Other: in cinema 61, 63–64, 67; cultural norms and 8; culture and media on 52; disabled as 8, 141; gaze and 77, 81 Paa 53, 55 Paalum Palamum 60 Pal, J. 61 Panchatantra 39 Paralympic Games 96 Paranjpe, S. 62 Parekh, A. 66 Paromitar Ekdin 57 Partridge, J. 71 Pati-Ninda 40 Payal 62 Penn, A. 54 Peranbu 60 persons with disabilities: able-bodied decision-making for 5–6; aids and appliances for 124, 125; assistive technologies 98; bivalent collectivity and 2; in cinema 16–17, 50, 52–61; cultural representations of 16; discrimination and 11, 14; education

196

Index

and 117, 121; gain and 83; gaze of others 4, 77, 81; gender roles and 102–103; higher education and 134, 135, 136; identity and 142, 148–149; inclusive language for 95; life writing xiii, 143–145, 148–151, 153; literacy rate among 120, 121; in literature 21–26, 30; media accessibility and 97–99; as minorities 3, 24; mobile applications and 97; as Other 8, 141; passing and 6–7; perceptions of 6–8, 14–15; personal experiences of 10, 36, 143–145, 147; pity and 38; political participation and 109; rehabilitation of 67; self-concept and 2–7, 63, 65–66; social media and 97; stereotypes and 8, 22, 25, 61, 64, 70–71; stigma and 3, 25, 52, 67; universal accessibility and 132; see also children with disabilities (CWD); women with disabilities Persons with Disabilities (PWD) Act 118, 129–131 Pervez, S. 43 Peter Pan (Barrie) 72–73 Philbrick, R. 74 Phir Milenge 54 physical disabilities: in Buddhism 45–47; in children’s literature 70–74; in cinema 53–57, 60–61, 67–68; in comics 77–78; education and 118, 124, 126–127, 132, 153; employment and 95, 114; fear and 141; in folk tales and ballads 39–40; gender roles and 102–103; higher education and 136; in Hinduism 37–39; in Indian children’s literature 74–77; in Islam 41–43; in literature 22, 35; in media 93; political participation and 111; in popular culture 64; sexual assault and 106–107, 109; women and 102–103, 110, 114, 136, 147 Pleynet, M. 18 political participation 109–111, 115 Politics of Disablement, The (Oliver) 10 Pollyanna (Porter) 72 Porter, E. 72 Postman, N. 90 postmodernism 3, 18 post-traumatic stress disorder 81 Pothier, D. 11 power: able-bodied/disabled ix, 3, 64–65, 146; disability and 23, 64,

154; discourse of resistance and 20–21; gaze of others xi, 4, 64; gender and ix, 65, 102; media and x, 20–23, 52, 91, 93; minorities and 3; stereotypes and 70 Prater, M. A. 79, 85 Pratt, M. L. 144 Press Council of India (PCI) 94 Price, M. 85 Pride Against Prejudice (Morris) 5 Prilleltensky, O. 145 Prince, D. 83 Printing Press as an Agent of Change, The (Eisenstein) 96 Project Approval Board (PAB) 119 Quayson, A. 140 Queer Crip (Kafer) 26 Quetelet, A. 152 Qur’an 40–42, 44 Radio Udaan 99 Rai, S. 66 Rain Man 62 Rajendran, S. 75 Ramayana 30, 35–38, 61 Rao, S. 75–76 Ratnam, M. 54 Real (Inoue) 83 Reece, C. 86 Reeve, D. 2 Rehabilitation Council of India (RCI) 129–130, 154 Rejected Body, The (Wendell) 5 religion: Buddhism 44–48; Christianity 48–49; culture and 88; disability and xi, 29–49, 88; disability studies and 48; Hinduism 29–40; Islam 40–44; see also theology Representing Autism (Murray) 26 resistance 20 Revathi 54 Ride Together, The (Karasik) 26, 82 Right of Children to Free and Compulsory Education (RTE) Act 125–127, 129–130, 133 Rights of Persons with Disabilities (RPwD) Act 98, 129–133 Rig Veda 30 role-playing 3, 65 Roman, C. 2 Rorby, G. 74 Ross, K. 150

197

Roudram 59 Rousso, H. 145 Rowling, J. K. 22, 71–72 RTE Act see Right of Children to Free and Compulsory Education (RTE) Act Russo, N. F. 136 Saathi 60 Sabha Parva 31–33, 37 Sachar, L. 74 Sadaf, A. 94 Saliers, D. E. 23, 153 Santana, R. 78 Santhi 59 Sarmah, R. 56 Sartre, J. P. 4, 65, 147 Sarva Shiksha Abhiyan (SSA) 118, 124–125, 138 Sati 57 Savarese, R. 83 Schroer, M. 50 Schulz, W. 89 Schweik, S. M. 26 Scott, R. A. 2, 65 Secret Garden, The (Burnett) 72–73 Seeing Different (Irwin and Moeller) 80 Seibers, T. 24 self identity 2, 65 self-surveillance 4, 64 Sen, A. 95 Sengupta, S. 93 Severance, M. 145 sexual violence 105–109 Shabdo 58 Shah, S. N. 42 Shakespeare, T. 23, 61, 64, 68, 86, 141, 143 Sharaabi 62 Sherry, M. 140 Shikhandin 75 Shildrick, M. 141 Shrivastava, V. 45 Silbey, S. 22 Silent Voice, A (Ōima) 83 Simply Nanju (Sulaiman) 76 Sinha, T. 57 Small, D. 77 Small Steps (Sachar) 74 Smith, A. 86 Smith-D’Arezzo, W. 85 Snyder, S. 24, 142, 145 Snyder, S. L. 150 social constructivism ix, 8–9, 11, 14, 23

social creationism 14 social identity theory 70 Söder, M. 14 Somers, M. R. 148 Sonpal, D. 127 Sonthalia, A. 76 Soukup, P. A. 89 Sound and the Fury, The (Faulkner) 71 Sparsh 53, 62 Specific Learning Disability (SLD) 131 Spillman, K. 76–77 Spyri, J. 72 Sridhar, L. 94 Steinbeck, J. 70 stereotypes: in cinema 16, 61, 64; in literature 22, 25, 71; media representations and 25, 68, 70, 92; persons with disabilities and 8, 22, 25, 61, 64, 70–71; physical attractiveness and 8; power relations and 70; social identity theory and 70; social unacceptability and 16 Stern, N. 145 Stevenson, R. L. 72–73 stigma 3, 25, 52, 67 Stigma (Goffman) 23 Stitches (Small) 77 stranger concept 3–4 Stuck in Neutral (Trueman) 74 Styles, M. 84 Suchita Srivastava & Anr vs Chandigarh Administration 108 Sulaiman, Z. 76 Susie Will Not Speak (Rao) 76 symbolization 90 systems model 15 Taare Zameen Par 53, 55, 68 Take Up Thy Bed and Walk (Keith) 73, 145 Tamil films 59–60 Tata Institute of Social Sciences (TISS) 155 Taylor, S. J. 67 Teachers Preparation in Special Education (TEPSE) 134 Tera Mera Saath Rahen 67 theology: disability and xi, 12, 48; discourses of 89; media ecology and xii, 88–91, 100; see also religion Theology and Down Syndrome (Yong) 49

Thibaudeau, J. 18 Thompson, J. B. 89 Thurer, S. 22, 71 Tichenor, P. J. 91 Titchkosky, T. 28, 93, 142 Tobe, K. 83 To Kill a Mockingbird (Lee) 71 Tom, Dick and Harry 62 Treasure Island (Stevenson) 72–73 Tregaskis, C. 11 Trueman, T. 74 Turner, G. 17 U, Me Aur Hum 54 Udassi, H. 75 U Me Aur Hum 56 Unbroken (Nambi) 77 UN Convention on the Rights of Persons with Disabilities (UNCRPD) 111, 133, 138 Universalisation of Elementary Education (UEE) 125 Upanishads 61 UPIAS (Union of the Physically Impaired Against Segregation) 13 Vasey, S. 11 Vazhai Yadi Vazhai 59 Vibhuti Cat (Shikhandin) 75 Vidali, A. 25 violence against women 104–109 visual impairment see blind and visually impaired Viswanath, T. 76 Volatile Bodies (Grosz) 147 Walk with Thambi, A (Karthik) 75 Ware, L. 150, 155 Watermeyer, B. 147 Watson, J. 148 websites 96–97 Weinberg, N. 78 Welcome to the Forest (Menon) 75 Wendell, S. 5, 8 Whalen, Z. 78 What Katy Did (Coolidge) 72–73 Wheel Chair 57 Whitaker, Z. 75

Why are You Afraid to Hold my Hand? (Dhir) 76 Wiggin, K. 73 Williams, R. 21 Wings to Fly (Rajendran) 75 With the Light (Tobe) 83 With the Power of Each Breath (Browne et al.) 145 Women and Disability (Fiorito and Doherty) 111 women with disabilities: accessibility and 136; aids and appliances for 124–125, 125; autobiographical narratives and 145–146, 149–150; bhalo meye ideologies 146; communication difficulties and 108–109; construction of femininity 146–147; depictions in cinema 60, 62–63, 66–67; disadvantages and 8; discrimination and 101–104, 145–146, 150; economic selfsufficiency and 63, 66; education and 121, 123, 123, 124, 136; employment and 111, 112–113, 114–115; feminist scholarship and 110, 114–115; forced sterilization and abortions 103; gender roles and 102–104; higher education and 136; institutionalization of 105–106; lack of news coverage and 28; personal experiences of 10; political participation and 109–111, 115; sexual assault and xiii, 105–109; traditional female fields and 136; transportation accessibility 114; victimization of 63; violence against 104–109; see also gender; persons with disabilities Women With Disabilities India Network 105 World Report on Disability 119 Worrell, T. R. 25 Yong, A. 49 Young, I. M. 8 Zero 62 Zola, I. K. 6, 24 Zordaar 62