Disability in South Asia: Knowledge & Experience

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Edited by: Anita Ghai

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  • Part 1: Historical and Theoretical Perspectives on Disability Studies

    Part 2: Disability, Body, Care and Sexuality

    Part 3: Knowing the Self and Writing Life

    Part 4: Disability in Literature and Culture

    Part 5: Disability, Family Epistemologies and Resistance to Shame within the Indian Context

    Part 6: Legal Discourses of Disability in India

    Part 7: Constructing Disability as Diversity

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    Preface

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    Advance Praise

    This collection of essays fills the need for a comprehensive book on disability studies in South Asia. Covering a range of topics from the history of disability activism to philosophical and cultural issues in relationship to the disabled body and mind, the book has a strong through-line of calling for greater attention to disability and promoting a biopolitical approach to a previously disregarded group of people who make up a fifth of the population.

    —Lennard J. Davis, Distinguished Professor of Liberal Arts and Sciences, University of Illinois at Chicago

    I have known Anita Ghai for over two decades now. She is one of the most fiery and outspoken advocates we have in the Indian disability movement. She has dedicated her life to creating a body of knowledge that speaks of her commitment to the cause of disability in general, and women and girls with disabilities in particular. This is an exemplary contribution in a scenario where scholarship on disability issues is just not there. Her latest work, Disability in South Asia: Knowledge and Experience, is another such effort in this direction. I am confident that this publication will generate a discussion and trigger actions that will pave the way for better and dignified lives for people with disabilities not just in India but the whole of the South Asian region.

    —Javed Abidi, Chairperson, Disabled People's International (India) (DPII) and National Centre for Promotion of Employment for Disabled People (NCPEDP) Asia Pacific

    Anita Ghai has orchestrated a collection that will enrich disability studies scholarship everywhere, bringing forward a wonderful variety of work from, and about, South Asia. This collection represents new engagements with various impairment experiences while theorizing powerful colonial systems of knowing. A must-read Disability in South Asia revolutionizes the connections between disability studies in the Global South and in the Global North by enacting a vital promise to nurture scholars and activists in a re-examination of the meaning of disability. Readers of Disability in South Asia are invited to carry forward this promise by joining the developing need to question the peripheral existence of those living with disability and engaged in disability studies.

    —Tanya Titchkosky, Professor of Disability Studies, Department of Social Justice Education, OISE, University of Toronto, Canada; author of Disability, Self, and Society; Reading and Writing Disability Differently and The Question of Access: Disability, Space, Meaning

    Disability in South Asia is an essential text that captures a crucial moment in time of the development of critical disability studies—a time when the dominance of Western European and North American disability theory is contested and replaced instead with new forms of critical thinking and activism.

    —Professor Dan Goodley, iHuman, University of Sheffield

    This book has brought together writers on disability whose activism and theorizing are integral to each other as they capture the multiplicity of arenas in which activists and scholars are engaging. A collection of powerful statements on disability with great insights, it sets before us a line of serious enquiry. It is a book sorely needed and inspiring and will be a rare resource for every disability studies classroom and on the reading list of disability organizations and activists.

    —Asha Hans, Co-Chair, Pakistan India People's Forum for Peace and Democracy

    Acknowledgements

    To Dr B. R. Ambedkar's vision of social justice and equity so that concerted efforts are made to include people with disabilities in the ambit of this vision

    Preface

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    Foreword

    While designing the Ambedkar University Delhi (AUD), the imagination behind its School of Human Studies (SHS) was that it would offer a platform for academic and research programmes on various human predicaments such as mental illness, ageing, disability and marginali-zation on the basis of gender, sexuality, poverty and so on. Some of these are relatively new areas of knowledge and professional practice. It was, therefore, necessary to first of all take stock of how the land lies as regards theoretical and research literature in each of these areas. This was attempted in psychosocial clinical studies, gender studies, psycho-dynamic psychotherapy as well as in development practice.

    I am very happy that in the area of disability studies, Professor Anita Ghai has gone a step further and attempted to bring together scholars and practitioners from this part of the world who have worked in and around disability as a lived reality, as well as a social, political, psychological and an epistemological category to form a multidisciplinary galaxy. Professor Ghai has so effectively brought this rather unusual congregation of scholars to reflect collectively on the contours of disability studies as a praxis and as an area of knowledge. This volume is the result of this intense and protracted exercise.

    Having been engaged deeply and intensely in disability studies for many years, for Professor Ghai, this volume is an important step forward and a significant milestone. This is perhaps the first book of its kind published in this part of the world. By bringing out this volume, Professor Ghai is in the process of staking a claim on behalf of disability studies for the status of a university discipline. This is undoubtedly a good beginning. I am hopeful that this book and the related publications that may follow it will provide generations of students and scholars in various disciplines of the social and human sciences and humanities as well as practitioners in disability greater access to the interdisciplinary area of disability studies.

    Shyam MenonDelhi

    Acknowledgements

    I would like to thank AUD, for promoting equity and social justice with excellence. This has inspired me a lot. The university encouraged me to think of disability as knowledge that would enrich the lives of both disabled and non-disabled in the interdisciplinary academic spaces.

    Several people have assisted me and played a decisive role in completing this book. While I would like to thank everyone who has contributed to the process of writing this book, some need a special mention.

    First and foremost, I would like to thank the vice-chancellor of AUD, Professor Shyam Menon for encouraging me to reflect on visualizing an anchor text on disability studies and laying down the foundations for the formulation of the reader. This work would not have been possible without Professor Menon's support at every stage of the process.

    I would like to express my gratitude to SAGE for giving me the opportunity to share my knowledge of disability with the readers.

    This text would not have been possible had the Advisory Committee for Research and Project Management (ACRPM) set up by AUD, not given generous funding to enable the completion of the text. Professor Venita Kaul as chairperson of the ACPRM provided me with the opportunity to initiate the work on this text. I also want to thank Professor Anup Dhar, the present chairperson, for supporting me in procuring the necessary finance for a research assistant. Both of them provided intellectual stimulation, encouragement and reassurance, which put my mind at ease in difficult moments. My special thanks to Dr Sunita Tyagi who because of her patience and unrelenting hard work is a sight for sore eyes.

    I would also like to thank Professor Ashok Nagpal, who encouraged me to initiate my work, and the present dean Professor Krishna Menon, who later continually backed me unconditionally to complete this project. I would also like to thank my colleagues Professor Anup Dhar, Professor Rachana Johri, Professor Honey Oberoi Vahali and Dr Rukmini Sen for their ideas and reflections on issues of disability studies.

    My thanks to the consultation committee comprising Dr Shanti Auluck, Professor Honey Oberoi Vahali, Professor Krishna Menon and Professor Anup Dhar for their valuable inputs that helped me in evolving the conceptual basis for the forthcoming book.

    I would like to appreciate the efforts of my workplace—School of Human Studies (SHS)—for providing a context to understand human predicament through an interdisciplinary approach that has led to the emergence of disability studies as a creative and dynamic field of intellectual inquiry and creative action. Further, the SHS office always provided me with timely and dedicated support in managing the administrative demands involved in developing the book. Thank you Santosh, Minakshi and Sandeep.

    My thanks to the Finance Department for their commitment to the effective management of monetary requirements of the book.

    My thanks to the AUD library and the librarian Dr Debal Kar, who was always active in getting books, journals and any related information. Many thanks, especially, to Ms Alka Rai for her support in providing articles and reading material for the work.

    I also thank Neha Sibal for her diligence and enthusiasm in helping the book become a reality. I would like to thank all the authors without whose contributions this book would have remained a dream—Jagdish, whose work on foregrounding the political agency of people with disabilities (PWD) has strongly challenged stereotypes of passivity and inaction associated with disability; Meenu, whose persistent efforts to develop cross-disability awareness in disability rights have served to expand the epistemological boundaries of disability activism and have brought hitherto subtle aspects of the disability rights movement (DRM) to the fore; Fiona, whose dedicated efforts to arriving at ever more nuanced conceptions of ableism have decentred the foundations of disability studies from a focus on disabled people to an investigation of the constructions of the concept of disability; Deepa and Valerian Rodrigues for their bold attempt to contextualize liberal notions of justice in Indian realities; Tanmoy for his shrewd and highly reflective cautionary tale about the relationship between disability studies and disability activism; Nandini for her rich and emotional analyses of lived experiences of women with disabilities; Janet and Niluka for a rare, thoroughly intriguing exploration of the historical and cultural crossroads between disability studies and queer studies; Upali for recognizing the immense phenomenological and political potential of the ethics of care and its centrality to disability studies; Nidhi for her nuanced explorations of the notion of intersectionality and its central-ity to her life as an activist; Sameer for his thoughtful and moving life story; Asha for sharing a brilliant journey of hope and transformation; Sandeep for his valuable work on the multifaceted nature of disability life-writing; Hem for his brilliant exemplar to disability as an episte-mological resource in life narratives; Someshwar for expounding the pervasiveness of disability in the Indian literature; Santosh for a beautiful illustration of the power of metaphor; Shubhangi whose explorations of the cultural nuances of disability across global contexts never cease to amaze; Shilpaa for bringing the historical, the cultural and the medical into dialogues that pave a new direction for disability in the Global South; Ankur for capturing the history of inclusion and its manifestations in real school contexts; Shridevi for her unceasing efforts to bring cultural discourses of disability into inclusive education; Suchaita for reiterating the structural nature of disability; Arun and Nivedita for reminding us of the enduring hold of neoliberalism in disability at the workplace; Amita for a rigorous exploration of legalities of disability; Rukmini for her analysis of changing notions of caregiving within the context of law and Shanti for her inspiring and insightful exploration of disability as an integral component of social diversity.

    I would also like to specifically thank Dr Tanmoy Bhattacharya, Dr Jagdish Chander and Dr Rachana Chaudhary for their initial advice in conceptualizing this work; Syamala Gidugu and Divya Jalan in helping edit the chapters on education as well as all the authors for assisting in reviewing the abstracts and articles.

    I wish to recognize Sandeep Singh whose advice and support have been crucial in realizing this piece of work. His friendship is both an intellectual support and emotional comfort.

    I am deeply indebted to Suchaita, my research assistant, for standing by me throughout this endeavour, both as an assistant and a budding disability studies scholar. Her constructive criticism helped me shape this book in the way it stands today.

    Finally, my family members who have supported me unquestioningly and unconditionally in all that I have done. Words can never do justice to their contribution.

    Introduction: Epistemological and Academic Concerns of Disability in the Global South

    We must leave evidence. Evidence that we were here, that we existed, that we survived and loved and ached. Evidence of the wholeness we never felt and the immense sense of fullness we gave to each other. Evidence of who we were, who we thought we were and who we never should have been. Evidence for each other that there are other ways to live—past survival, past isolation.

    —Mia Mingus, Leaving Evidence, 2009

    A rhizome has no beginning or end; it is always in the middle, between things, interbeing, intermezzo. The tree is filiation, but the rhizome is alliance, uniquely alliance. The tree imposes the verb “to be,” but the fabric of the rhizome is the conjunction, and… and… and….

    —Gilles Deleuze and Félix Guattari, A Thousand Plateaus

    Disability studies (DS) as a formal area of academic inquiry has been making significant strides in the Global North since the 1990s with rigorous interdisciplinary scholarship and the emergence of several full-fledged academic programmes. In contrast, DS scholarship in India is in a relatively nascent stage. The epigraphs bring us to the understanding of the Deleuzoguattarian rhizome, which offers a chart and metaphor for the ‘field’ of DS, as it grows outside the boundaries of a defined discipline or programme. Within the university, we are always confronted with the parlance of connotations such as inquiry in a field, as to that of ‘discipline’, ‘department’ or ‘programme’. When we think about rhizomatic thinking and growth, we are reminded of Deleuze and Guattari's (1987, 24), ‘Don't sow! Grow offshoots! Don't be one or multiple, be multiplicities!’

    Kuppers too, musters the rhizome to open up new ways of approaching disabled ways of living, ‘disability’ as a word and concept, and disability poetry. She offers a ‘rhizomatic model of disability that can hold a wide variety of experiences and structured positions in moments of precarious productive imbalance’ (2011, 93).

    When you think of a new academic programme, the usual pattern is to find out a list of scholars who ‘do’ whatever they are looking for— sociology, history, psychology, education and so on. It is, however, extremely rare to find someone who ‘does’ DS because of the historical myopia towards disability within academia. As is the case with women and gender studies, a disability perspective has been considered to be too limiting to be of any epistemological significance.

    To reference Raymond Williams, if DS is a ‘field’, what are our ‘keywords’ or search words? And if we do not have any, or if we have only insufficient ones, then how can we be found? One of the main concerns with scholarship in keywords in DS is the absence of a lexicon of disability typical of the Global South. If DS is a ‘field’ or, better still, a ‘field of energy’, where does it happen, especially in non-Western contexts? The inconspicuousness of DS on some campuses may be a result of the critical ways the field departs from how disability has been treated historically. So much of disability history has entailed the grouping together of disabled people through techniques of surveillance, identification and nomenclature.

    Moreover, DS is a ‘field without programmes’. We have seen the glimpse of academic understanding of disability, and there is work in Global North that states that ‘fields’ such as DS have the destabilizing potential of Deleuzoguattarian ‘bodies without organs’—that is,‘fields without programmes’ might resist the hierarchy and methodical format. Interdisciplinary alliances are one of the ways to address this issue.

    DS perspectives, therefore, enlighten how individuals designated ‘disabled’ are treated in a manner that diminishes their economic, interpersonal, psychological, cultural, political and physical well-being, relegating them to membership in a minority group. The promise of DS can enable academia to think critically not only about disability but also about oppressions that affect all historically marginalized groups. Scholarship in the universities has become enriched through various interdisciplinary and onto-epistemological standpoints of gender, caste and sexuality, urging us to interrogate the very foundations of knowledge itself.

    This volume represents both senior and younger scholars who present their writings about DS across and beyond disciplines and from a range of standpoints within the spectrum of disability. The corpus of the book is important as this text might be a forerunner for the DS programme in AUD. This is where we could perhaps insert the previous highlighted section about DS in AUD. The School of Human Studies at AUD is in the process of incorporating DS programmes to establish its own moorings as an area of scholarship and practice. Disability in South Asia is intended to be a corpus for the AUD DS programmes. The ‘volume’ brings multiplicities from various scholars in the newly emerging field of DS.

    In the last three decades, these inquiries became critical, as I understood epistemic ignorance as a term used by intellectuals. It became clear that the apolitical stance of academia contains an implicit political ideology; and silence or denial of their involvement is no less a political act than an explicit political action. As Minow (1989, 117) noted, the ‘inattention itself does communicate a message of relative disinterest or complacent disregard’. Sometimes, disabled people are ‘given’ a voice but urged to speak and express their views and perspectives in the name of tokenism. Difference in my way is actualized in such a way so as to render powerless and almost abandoned.

    As per the WHO's report on disability (2011), more than 15% of the world's population is affected by disability, including physical and sensory impairments, developmental and intellectual disability and psychosocial disability. For me as an editor, a pertinent question that has been critical is how do we come to know disability? What are the conceptions of the normal? What is autonomy? When exactly is life not worth living? Why does rationality have to be the sole determinant of our humanity? How do we define limit? As an insider, I find that knowledge about disability is all embracing with the most radical re-imagining of new questions. They produce few answers but rather embrace the practice of constantly troubling the questions. As Goodley suggests, ‘Disability studies are a broad area of theory, research and practice that are antagonistic to the popular view that disability equates with personal tragedy’ (2011, xi). Moreover, ‘disability affects us all, transcending class, nation and wealth’ (p. 1).

    Davis calls for a shift in the focus of DS from the construction of disability to the construction of normalcy. He justifies this approach on the grounds that ‘…the “problem” is not person with disabilities; the problem is the way that normalcy is constructed to create the “problem” of the disabled person’ (2013, 3). As I state elsewhere, ‘DS takes up the issues of “Othering”, metaphors that guide disability and the need for a paradigm shift.’ The idea is to evolve an epistemology of disability through the tool of DS. My aim is to underline DS (neglected in Indian academia) as an interdisciplinary area that utilizes the lenses from the social sciences and humanities to view disability from personal, social, cultural, historical, critical and literary perspectives. In one sense, the development of DS is a corrective endeavour to rectify the misinterpretations of disability. Within India, many scholars have initiated work on DS. Jagdish Chander, for instance, traces the emergence of disability as a political construct through the evolution of the disability rights movement (DRM), particularly through the agitation of the organized blind in India (see Chapter 1 in this volume). Addlakha (2015) observes that the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and the people with disabilities (PWD) Acts have initiated a shift in the construction of disability from the welfare, the medical and the charity models to human rights models of disability. However, this shift has not been accompanied by a concomitant emergence of DS as an interdisciplinary area of study that values the experiential realities of disability and the history and culture of people with disabilities (PWD). Hence, there is a need for expanding the limited scholarship in DS in India to capture the heterogeneous and multifac-eted nature of disability from various disciplinary and cross-disciplinary standpoints, sociocultural contexts and lived experiences of PWD.

    Mehrotra (2011) claims that DS originated from activism across various Western contexts, including India. This has created its own share of opportunities and limitations for DS. On the one hand, DS is grounded in lived realities of disability and emphasizes emancipatory research. But, on the other hand, DS risks inheriting some of the limitations of DS activism, including a limited focus on intersectionality, a problematization of the public/private divide, limited focus on the heterogeneity of disability and so on.

    DS has been the academic part of the DRM. The political theorist Michael Walzer seems to have published more than one text in 1987, and I am unable to access them. He has concisely characterized ‘social criticism’ as ‘the educated cousin of the common complaint’ (Walzer 1987, 65) to make his argument that effective social theory must never move too far from the very real problems faced by everyday people. Though there is a movement from the medical to the social, framed in cultural contexts, an understanding of disability as legitimate knowledge is still missing. People-oriented movements have highlighted oppressive structures and given voice to marginalized communities; however, these voices do not include the knowledge base of DS. This is critical as knowledge and the study of disability should question not only issues of medical cure or rehabilitation perspectives but also raise an ‘academic enquiry’ on a par with gender and women's studies, Dalit and tribal studies, race and ethnic studies, and other such areas.

    DS has not been privileged within academia, perhaps because the understanding of disability is intimately connected to the study of ignorance, invisibility and identity as academia has not evolved tools for understanding how and why various forms of knowing have ‘not come to be’, or disappeared, or have been delayed or long neglected, for better or for worse, at various points in history. The absence of disability from the mainstream academia creates and maintains a status quo where the ‘disabled’ are incorporated within the existing social patterns as ‘problems’.

    Disability, thus, remains an out-and-out state, both politically and academically—it is the source of its own oppression. Such an understanding suggests that more is at stake than a problematizing discourse of specific categories. By not exploring this relationship, higher education at large has delimited inquiry and pursuit of knowledge of disability. This is perhaps because schools, colleges and universities remain sites where not only knowledge but also a middle-class orientation, with its patriarchal, neoliberal and normative values, is produced and reproduced. So, in my understanding, DS is an interdisciplinary study and representation of the concepts, cultures and personal experiences of disability in all its variations.

    DS in the Global North and some universities in India are already tackling the multiplicity of the goals of DS. For instance, the term ‘disability studies’ cannot be a substitute for special education or rehabilitation sciences. The term cannot be compatible with research into community support and inclusive education either, although research in these areas is in accord with these issues. An academic understanding of disability as a social, cultural and political phenomenon, I believe, externalizes the issue and helps counter the notion of disability as an inherent, unchallengeable trait located in an individual. Such an approach rejects the view that disability is solely a medical problem or a personal tragedy. DS, thus, places the responsibility for re-examining and repositioning the place of disability within society and academics and not on the individual. DS may be many things to many people, but if its full potential is to be realized, then it must avoid being seen as simply a new bottle for old wine.

    I am reminded of what Mia Mingus mentioned in her blog about disability being heterogeneous. We cannot ignore the fact that oppression and privilege divulge themselves differently among disabled people. This reality can be damaging to cross-disability understanding. As Mingus says,

    To pretend as though those of us who pass as able bodied or ‘don't look like we're disabled’, don't receive a totally different reality than those of us who are undeniably and obviously marked as disabled by everyone they meet, would be ridiculous and does not do justice to what we are up against nor how powerful a system ableism. (Talley 2017)

    The potential of DS is to understand disability to be as broad as culture itself. For this, the tools and traditions of all our ways of knowing about the world have to be comprehended and perhaps even recon-ceptualized. The subject matter of DS transforms the understanding of disability from an individual deficit to a complex derivative of social, environmental and biological forces. In academia, disability is an interdisciplinary subject of study within the social sciences and the humanities. The promise of DS can enable academia to think critically not only about disability, but also about oppressions that affect all historically marginalized groups. Scholarship in universities has been enriched through various pieces of work such as gender, caste and sexuality, deepening our understanding of multiple epistemic positions and firms of structural inequalities. The interdisciplinary work in DS, therefore, would initiate and evolve new meanings about disability and examine issues of access, employment, education, sexuality and representation.

    The present attempt is to foreground how the inclusion of DS as a field of inquiry within mainstream academia can enrich scholarship and contribute to the understanding of the heterogeneity of disability. My hope is, that the present edited volume can reflect the personal and the political. The interdisciplinary character of DS enables it to incorporate the conceptual frameworks and intellectual tools of various disciplines from history to law, and literature to sociology as well as to enrich these disciplines by questioning their fundamental theoretical and methodological orientations. The works in the present volume are illustrative of this critical reciprocity between DS and other disciplines.

    What I am suggesting in the present volume are six themes with an understanding that disability is an epistemology. Notwithstanding a serious reflection on misrepresented public perception, legislations and policy implications for creating a disabled-friendly world, knowledge about disability is equally critical. Such an attempt can only be a microscopic surge in the serious debate on disability.

    Part 1: Historical and Theoretical Perspectives on Disability Studies

    Within the Indian subcontinent, awareness about the issues and concerns of lives touched with disabilities is a fairly recent phenomenon. It was only in the 49th year of independence that the first legislation advocating equal rights for disabled people became a living reality. At this juncture, it might help to put things into historical perspective. It is reported that the 1880s saw some educational and rehabilitative services being launched (Chauhan 1998, 46); the United Nations (UN), which renewed the efforts to rehabilitate disability, declared the year 1981 as the International Year of Disabled Persons. Largely, their history is predominantly a history of silence. The significance of history reminds us of dichotomies, such as ‘Us’ versus ‘Them’, ‘Self’ versus ‘Other’ or ‘One’ versus ‘Other’, meaning not only difference and opposition, but also superiority and inferiority. All binaries, in psychological parlance, operate in the same way as splitting and projection. Thus, the centre expels its anxieties, ambiguities and irrationalities onto the inferior term, filling it with the converse of its own identity. The other, in its very strangeness, simply mirrors and represents what is deeply familiar to the centre, but projected outside of itself. It is this process of marginality that produces the resentment, enmity and repugnance for the one who is sensed as the other. Framing the argument in this form mandates a justification for the inclusion of disability in the categorization discourse. However, disability provokes fears and anxieties about ‘able body’ mortality and very easily renders itself as the ‘Other’. This process of alterity needs to be understood to comprehend the experience of exclusion. Alterity is a term that has been often used to signify ‘Otherness’. The ‘Other’ in the work of Michel Foucault, for instance, consists of those who are excluded from positions of power and are often victimized within predominantly liberal humanist view of the subject. Mehrotra, in her work on the DRM in India, observes the resistance to institutionalizing DS within the university. ‘There is general suspicion of research which challenges or disproves the claims of exclusion, deprivation and discrimination, in short the rhetoric of the movement’ (Mehrotra 2011, 70). Mehrotra notes that since DS has its origins in disability activism, it has drawn on many of the redemptory aspects of the DRM such as an emphasis of disabled experiences and recognizing disability as a political category and as an aspect of structural inequality. However, the origins of DS in the DRM run the risk of incorporating many of the shortcomings of activism.

    The hierarchy of impairments in the DRM in India is clearly one of the problems which western disability studies scholars have also pointed out. The frequent use of the symbol of the wheel chair often obscures the differences within the movement and the priorities of rights of persons with specific disabilities. This symbol however not only particularly represents persons with loco motor disabilities but also takes its cues from the societal and governmental stereotyping of disability. (Mehrotra 2011, 69)

    Thus, cultivating a cross-disability political awareness and recognizing the diversity of lived realities and epistemologies within the heterogeneous category of disability are critical for DS.

    The first chapter by Jagdish Chander interrogates the different views regarding time frame of the origin of the DRM in India. He establishes that the movement originated in the year 1989 when the National Federation of the Blind (NFB) began to focus the agenda of its movement on the demand for the enactment of a comprehensive disability rights law, leading to the enactment of the PWD Act in 1995. Crediting the leadership to NFB, there was a sustained movement from 1989 to 1995, which began to use a language encompassing cross-disability issues in 2016.

    Meenu Bhambhani traces the historical trajectory of the DRM in India with a thrust on the emergence of cross-disability activism. She analyses the shifts in the composition of disability activists in terms of their structural identities of class and caste. She observes the absence of a large-scale, multilayered and systematic, all-inclusive DRM in India and emphasizes the highly dispersed and often elite nature of disability activism in India. The role of the UNCRPD and the PWD Acts in fostering the movement as well as expanding the base of activities is also explored. Although Jagdish mentions cross-disability activism, his work focuses on a specific kind of disability and blindness, while cross-disability activism is central to Bhambhani's work.

    The chapters by Tanmoy Bhattacharya and Deepa Palaniappan and Valerian Rodrigues explore theoretical constructions of DS in India. Historically, the survival issues for disabled people were and are still significant, and theoretical considerations about disability issues have not evolved in the disability discourse in India. The existing literature repeatedly underscores the fact that disability has been long neglected by theorists otherwise fervently committed to exploring and communicating the experiences of marginalization. Undoubtedly, theory has to be envisaged as a critical channel so that disability as an identity category can fulfil the aspirations of PWD. Grech states ‘that disability studies, too, has hardly contemplated the subject of disability in the global South’ (2015, 11). He then states plainly and powerfully that, ‘While many talk about “global disability”, there is no such thing as a nuanced “global disability studies” yet’ (p. 18). There remains a ‘dearth’ of empirical research on disability in the Global South as well (p. 13). Any theory is not inherently healing or revolutionary. Theories, in fact, worry us as they can co-opt us in creating a magic world in which we settle down without queries. A good theory has to resonate with people across disabilities, which is directed towards lived realities that comprise void, pain and multiple lacunae. Though a significant connection between academics and activism is critical, the metaphysical aspects of disability deserve equal merit. The purpose was to understand disability as a critical cultural category because disability is part of a fundamental dichotomy, which separates what is deemed to be socially acceptable from what is not and, as such, is a particularly pertinent position from which to better understand the divisions, which exclude certain people from enjoying full and equitable participation in society.

    Drawing on the works of Bruno Latour, Fiona Kumari Campbell notes that the project of modernity cannot ever be fully realized, hence foregrounding the centrality of disability to human existence and challenging the normalcy associated with othering people on grounds of disability. Her work creates greater scope for disability's political foundations as an integral part of human existence. Campbell particularly distinguishes between ableism and disablism, a distinction often not clearly made in DS in India. She considers ableism to be a more appropriate concept within DS since it shifts attention away from identity politics to the conditions of possibility typical of modernity that construct disability in the first place.

    In the following chapter by Deepa Palaniappan and Valerian Rodrigues, the authors analyse the emergence of the disabled political subject in India. Acknowledging the limitations of disability theory in India in relation to analytical frameworks for caste and gender, the authors seek to develop an analytical framework for disability specifically within the Indian context using Rawls’ theory of justice. Their thrust is to explore how disabled people in India construct themselves as subjects rather than rely on the theorizing of their political subjectivity by non-disabled people.

    Later, Tanmoy Bhattacharya foregrounds the misunderstanding connected to the spirit of DS in the excitement associated with the birth of a new field and in the context of an uncertain dissociation from the zeal of activism. The author advocates the necessity of the two-way traffic between activism and DS theory building (Bhattacharya 2011). For a specific context like that of India, disability-related activities with its overemphasis on services are alarmingly close to creating a hegemonic discourse that shrinks the space for the emergence of a DS discourse. He reminds us that DS cannot be built on the ashes of activism. Though he does not suggest an either/or existential frame, he focuses on ‘estrangement’ which is best attempted if we understand the existing practices through the lens of ableism (please see Chapter 3 by Fiona Campbell in this volume) and by engaging in a disability-centric understanding of various themes within the academia. We now move from theorization to a theme that centres on body, sexuality and care.

    Part 2: Disability, Body, Care and Sexuality

    Within the DS discourse, bodies and impairments are not only biological entities but are cultural and social as well. As I state elsewhere (Ghai 1998), I questioned whether a disabled identity could not overlook the material reality of the impaired body. Notwithstanding the social understanding of disability, the exclusion of impairment from the discourse is conceptualized as a medical and psychological problem to be cured or rehabilitated. Considering that disability marks the body as biologically different and thus is a very clear reminder of the materiality of the body, the exclusion has taken some doing. Historically, the neglect probably goes back to Descartes (1979, 97) whose understanding is, ‘Although the whole mind seems to be united to the whole body, nevertheless, were a foot or arm or any other part amputated, I know that nothing would be taken away from my mind’. Quoting Siebers, Mitchell asserts that this group of scholars offers approaches that address disability ‘as an epistemology that rejects the temptation to value the body as anything other than what it was and that embraces what the body has become and will become relative to the demands on it whether environmental, representational, or corporeal’ (2001, 31).

    Nandini Ghosh writes about the experiences of the body and reflects on femininity, sexuality and disabled women in India. Using primary case studies of women with disabilities, she underscores that disability is experienced in, on and through the body, just as impairment is experienced in terms of the personal and cultural narratives that help to constitute its meaning. The author reminds us that the bodies that women experience are always mediated by constructions, associations and images which most patriarchal sociocultural formations accept and endorse. Further, she explores the multifarious processes through which disabled women internalize sociocultural constructions of the ideal or ‘normal’ female body, and how such ideas influence their thoughts about and experiences of their bodies in their daily lives.

    Janet Price and Niluka Gunawardena prompt us to ask some epis-temological questions in the historical development of the discourses of queerness and disability in South Asia with a focus on India and Sri Lanka. The authors seek to foreground the discussions on the relationship between sexuality and disability in the Global South, which has remained a hitherto limited area of study. They attempt to contextualize this historical and cultural analysis within the context of neoliberalism and globalization and its impact on local and national discourses of disability and queerness. They explore the construction of disabled people as heteronormative and yet de-sexualized and as too dangerous to participate in the processes of reproduction. Thus, queerness and disability are shown to be closely interwoven concepts, which also have a common historical context in India.

    Care is a human attribute that is connected to both disabled and non-disabled people. Ubiquity of care needs has to be accentuated as none of us live our lives without relying on care provided by others. The fact that many of us experience the need for care in early and later life cannot be cannot be veiled behind independence and autonomy. Disabled women's caregivers have been primarily mothers who have occupied a complicated, conflicting and marginal position within the discourse of DS. These tensions are compounded when the actions of mothers have been interpreted as constraints on their children's lives, limiting their prospects and ambitions. Within the caring discourse, mothers are constructed as ‘special, altruistic self-sacrificing’ whose place was absolutely in the home. Though caring, dependency and need are impossible to disentangle, presentations focus mostly on the ‘depressive symptoms, anger and resentment that are experienced by caregivers in the caring process’. Disabled people are, therefore, considered as a liability whose agency for defining their own care needs is not prioritized and is, instead, excluded.

    Upali Chakravarti problematizes ethics and practice of care and disability, and the gendered nature of caregiving is also implicit. She brings an important issue in developing an ethics of care, which is the view that dependency is created in PWD not because of their functional limitations but because of a variety of economic, political and social forces which produce this dependency. At the same time, Upali recognizes that care is an intrinsic part of the human condition itself and emphasizes the role of the community and kinship structures as well as the state in preventing caregiving from being perceived as a burden by relegating it to the task of individual women. In this chapter, Upali explores caregiving by mothers of children with disability extending into adulthood in comparison with the caregiving provided by the mother only during the course of child rearing and the professional caregiving provided by nurses.

    As Puar (2017) writes in her new book's preface, her goal in The Right to Maim is to:

    think through how and why bodies are perceived as debilitated, capacitated, or often simultaneously both […] I am arguing that the three vectors, debility, capacity, and disability, exist in a mutually reinforcing constellation, are often overlapping or coexistent, and that debilitation is a necessary component that both exposes and sutures the disabled/ non-disabled binary.

    Part 3: Knowing the Self and Writing Life

    No body, no voice; no voice, no body. That's what I know in my bones.

    —Mairs (1996a, 96)

    Historically, the assumption is that individuals with disabilities did not often write about themselves before the 20th century, specifically before the publication of Helen Keller's classic text, The Story of My Life (1903). Recently, some autobiographical work by disabled people, most of whom are also activists, such as Ved Mehta (1957, 2009), Malini Chib (2011), Shivani Gupta (2014) and Firdaus Kanga (1990), have attempted to challenge the historical voicelessness of PWD by constructing their own self-narratives.

    The reason for engaging with the memories of self and others is critical to understanding disability as cultural discourses that offer few affirmative resources for disabled people to draw upon in constructing their personal and social identities. The story of the self is critical, more so if the narrative is marked by extended movements back and forth through ‘health’ and ‘illness’, and ‘ability’ and ‘disability’. Often, in literature, disability and cancer serve as a metaphor of social breakdown, but in an autobiography, illness is associated with a unique subjectivity because an autobiography serves as a self-reflexive tool that helps to highlight a personal experience. In subtheme 3, I turn to this methodological tool of analysing personal narratives in the hope to offer a solution that is an alternative to the patronizing and marginalizing caricature by others. Autobiography, I believe, enables one to deal with the conscious and unconscious awareness of one's life situations and conditions. In such circumstances, the most critical questions are asked, making it imperative to seek a meaningful existence. Over the years, I have understood that the normative culture carries existential and aesthetic anxieties about difference of any kind, be it caste, class, gender or disability.

    People who have lived a peripheral existence on account of their deviation from the societal parameters are considered different and, therefore, marginalized. As mentioned earlier, othering in all cultures symbolically represents a sense of lack, tragic loss, dependency and abnormality. As I state elsewhere (Ghai 2015), I often think of the way Sartre (1956) had described how the look of the other can make one feel objectified, evaluated, embarrassed or ashamed of whom one is. It is true that no actions are experienced as appropriate until another confronts them; then they become improper and awkward when performed before the eyes of the ‘other’. As Sartre says, ‘by the mere appearance of the Other, I am put in the position of passing judgment on myself as on an object, for it is as an object that appear to the Other’ (1956, 189). Whether conscious or not, the self acquires a different identity. Thus, identification of disability losses and gains is never meaningless. This section brings together two authors who share their personal journeys of the disabled self.

    Nidhi Goyal wonders whether she is privileged or marginalized. Her narrative is located in the cusp of women's rights and DRMs in India. The author as an activist reflects on her growing up as a bold and stubborn child, the onset of blindness in her teenage years and her advent into disability activism. Within her narrative, one finds a tenuous relationship with marginalization, privilege and its intersections. She raises significant questions about the politics of agency and representation within DRM, the perception of disability as a category of structural inequality by members of other marginalized social groups and the manner in which gender intersects disability in specific contexts of South Asia. Beginning with her own personal experience of turning blind at the age of 15, Goyal narrates how she took all challenges in her stride including the onset of blindness. However, a question that arises in her case is why she feels the need to avoid sharing the possible vulnerability, trauma, confusion and mixed feelings that are likely to have accompanied the onset of her disability. Is it possible that vulnerability is perceived as antithetical to the construction of the self? This is a concern that merits further reflection.

    In contrast, Sameer Chaturvedi shares with us a journey of a person who has lived with cerebral palsy. As the author says, he has experienced his physicality as well as societal attitudes towards his personhood. His fascination for cricket, dance and movies did never really allow him to think about his body or the social perception of it. However, the unconscious always revived his fantasy and a desire to normalize. He shares his pain and privileges that constructed his self in family, school and college. Notwithstanding the losses associated with disability, the boundaries between impairment and disability are often blurred as his identity and experiences form a complex narrative. Both Nidhi and Sameer's narratives remind me of Arthur Frank (1995) who calls a ‘quest narrative’ in which the introduction of disability was accepted and used to derive personal meaning. As Frank (1995, 128) explains,

    [T]he genesis of the quest is some occasion requiring the person to be more than [s/he] has been, and the purpose is becoming one who has risen to the occasion.

    I also wonder if both Nidhi and Sameer are articulating a conscious relationship with their own bodies and selves; we do not ‘inhabit’ an inert object body but we are subjectively embodied in a malleable, developing and crisscrossed process of being. What is the part of the self that we call ourselves as mine, myself or me, divorced from the overall understanding of life?

    The next narrative is that of a mother, Asha Singh, who traces the journey of a mother and daughter in the various stages of the course of life. Negotiations, resistances and silences peppered with rebellion form the core of the narrative as a child grows from a baby who reacted to the second dose of DPT immunization to becoming an assistant teacher in a leading private school. One common theme that will weave different narratives will be engagement with an individual person's growing social presence. The ability of the family and individual to take bold decisions and act on impulses as well as reflect on possibilities is analysed in this study. The social spaces inhabited need to encourage all the stakeholders to form collaborations, and show cooperation and consideration.

    The following two narratives, written by Sandeep Singh and Hemchandran Karah, move further from self-narratives to analyses of disability life. Kadar (1992) describes life writing ‘as genre of documents or fragments of documents written out of life, or unabashedly out of personal experience of the writer’ (p. 29). It comprises texts, which are fictional and non-fictional, which are linked by ‘a thematic concern of life or self’ (p. 29). Sandeep R. Singh traces major assumptions about life writing, particularly on the development and foregrounding of the interiority of the self and the significance of this construction of the self for the development of personal subjectivity. There is then an exploration of the evolution of DS as an area of inquiry and the centrality of the self and personal experience to DS. This claim paves the way for an organic and very important connection between life writing and DS. This chapter uses the works of Oliver Sacks, a neurologist and writer, and his writings about the experiences of his patients. The most essential features of Sacks’ work, which are also a major contribution in the field of DS, are his nuanced documentation of the lives and experiences of his patients. This approach to their personal narratives is significantly different from self-narratives. It is also noteworthy in its attribution of agency to ill and disabled people who have hitherto been deprived of the agency of voice.

    Hemchandran Karah analyses Ved Mehta's Continent of Blind culture. The author analyses the life and works of the prolific blind author, Ved Mehta. The thrust of the author is on the various ways in which Mehta attempts to reconcile his life and experiences with the realities and necessities of blindness while retaining a strong attempt to achieve normality. Central to this writing is the study of the twin cosmologies of the masculine and the feminine represented by Mehta's parents. Priti vajna or absolute obeisance to the father and his father's efforts to enable him to get a good education are central to Mehta's attempts to negotiate his masculine identity, while his mother's constant efforts to find a cure for his disability and the relationship between mother and son that ensues are identified as the main narrative anchors of the text. Although not explored substantially, there is an attempt to undertake a psychoanalytic reading of the text with a specific focus on Mehta's own familiarity with psychoanalysis.

    Part 4: Disability in Literature and Culture

    Culture is defined as activities and practices—those areas of life in which people are acting together. In sum, through guided participation in cultural practices, the novice becomes ‘one of us’. In this quite harmonious picture, both novice and expert are motivated to fulfil their respective functions (learning and guiding) in the joint project of ‘doing culture’. In a third approach, the person's subjectivity and experiential world are the places where we meet culture. The person is defined not as a motivated and active participant in mostly harmonious cultural practices, but first and foremost as a homo symbolic us, a meaning-maker (Bruner 1990). The concept of culture is the central feature of several social science disciplines. Though the significance of disability as a culturally produced and negotiated construct is used metaphorically, uniform interpretations through which culture is understood are not clearly stated. Cultural expectations always reflect systems of shared beliefs; values, customs, behaviours and artefacts used by the members of a society to cope with their world and one another. It can refer to language, thought, spirituality, social order and activities, interactive matrix and much more. The term ‘culture’ has been defined as ‘a learned system of meaning and behaviour that is passed from one generation to the next’ (Carter and Qureshi 1995, 241), and as all the traditions, ideals and way of life ascertained from the given environment. The continuous use of disability as a source of cultural meaning has been well documented in films, literature, popular culture and folklore and fairy tales. In these contexts, authors’ and screenwriters’ understanding of disability operates as a form of what Mitchell and Snyder call ‘narrative prosthesis’ (2003, 15). A review of our cultural forms of expression provides evidence of the metaphoric role of disability, which is deeply ingrained in our social values. Disability, thus, becomes a tool for social, entertaining or political agendas unrelated to disability oppression.

    Although DS is considered to emanate from Western activism and academia, several fascinating instances of cultural constructions of disability flourish the world over. However, a nuanced analysis of cultural discourses on disability from the Global South as well as from marginalized populations of the developed world reveals highly evolved and progressive findings that serve to expand and enrich the entire field of DS and various development programmes in the field of disability.

    Shubhangi Vaidya attempts to capture and reflect on some of these notable cultural discourses of disability from across the world with a specific focus on the formation of disabled identities and communities. Using the concept of ‘biosocialities’, the author analyses the formation of disabled solidarities and communities with reference to deaf pride and autistic neurodiversity in the age of globalization and digital networking. Thus, the emergence of transnational communities of disability from across diverse cultures and the significance of these communities for DS shall be explored.

    Shilpaa Anand similarly analyses how the notions of corporeality and associated standards cast certain bodies as ‘abnormal’ in the Indian context. Using the method of cultural history, the author analyses specific examples of disability from India's history including leprosy and dwarfism and compares them to similar narratives from ancient Greece. An attempt is made to foreground the manner in which sociocultural conditions construct the concept of disability. A colonial lens is brought to the fore by the analysis by a British author and an Indian author, which captures the same form of disability experienced differently. There is also a deep exploration of the concept of medicine, healing and treatment that compares Ayurveda to modern medicine. The analysis reveals the centrality of the social context to healing practices in Ayurveda, the individuation of healing in the same tradition and the centrality of patients’ narratives to treatment in Ayurveda, which is what crucially distinguishes Ayurveda from Western medicine.

    Drawing from postcolonial literature in India, Someshwar Sati interrogates normalcy and explores the various representations of disability in selected prominent texts from the Indian English literature: Anita Desai's Clear Light of Day (1980), Salman Rushdie's Midnight's Children (1981), Firdaus Kanga's Trying to Grow (1990) and Indra Sinha's Animal's People (2007). From analyses of general themes in literary DS such as disability as narrative prosthesis and disability as metaphor, there is a thrust on analysing disability as an embodied identity and a lived reality. There is an attempt to analyse the aforesaid texts in the context of transnationalism and global capitalism and the manner in which the local and the global engage in complex interactions as manifested in these texts.

    Santosh Kumar explores the manner in which disability is represented in the Jataka Tales and the Panchatantra. Focusing on the literary device of the metaphor, Santosh attempts to demonstrate how the usefulness of the metaphor in abstracting the particular and enabling ideas to travel needs to be scrutinized adequately because of the reductionist potential of the metaphor. The author suggests that the use of metaphors to describe disabilities in folktales has resulted in extreme injustice and discrimination against disabled people. It is also responsible for the construction and reproduction of stereotypes about disabled people. The fifth subtheme includes the issues of education and employment.

    Part 5: Disability, Family, Education and Employment in the Indian Context

    In the philosophy of education, the notion of normalcy tends to demean children with disabilities, as difference is always understood as “special”. The understanding leaves out children with disabilities from the mainstream. Since education is closely related to personhood, disabled people however have always existed at the precincts of the society. They have been excluded socially, politically and economically and, more critically, educationally.

    In fact, educational issues of disabled children have debates in almost every country. As Lindqvist (1999, 7), former UN Special Rapporteur of the Commission for Social Development on Disability, puts it:

    A dominant problem in the disability field is the lack of access to education for both children and adults with disabilities. As education is a fundamental right for all, enshrined in the Universal Declaration of Human Rights, and protected through various international conventions, this is a very serious problem. In a majority of countries, there is a dramatic difference in the educational opportunities provided for disabled children and those provided for non-disabled children. It will simply not be possible to realize the goal of Education for All if we do not achieve a complete change in this situation. (Emphasis mine)

    Within India, the slogan that has been popular is inclusive education as there has been a struggle between integrated and special education. As Corbett and Slee (2000, 136) comment:

    Inclusive education is a distinctly political ‘in your face’ activity that proceeds from larger political, as opposed to technical questions about the nature of society and the status afforded to people in varying forms and structures of social organization. A political movement in the first instance, inclusion is about establishing access for all people. It is not conditional, nor does it speak about partial inclusion. Its impetus emanates from the recipients of professional services rather than from being orchestrated by professional themselves. This subtheme discusses the issues of education with the realm of disability studies.

    In the first chapter of this section, Shridevi Rao foregrounds the family epistemologies’ resistance of shame that is experienced with children with disabilities. The author draws on the findings of a qualitative study that focused on the perspectives of Bengali families of children with disabilities and their experiences in enhancing the inclusion of their children within their families, neighbourhoods and communities. She focuses on how families use the collective identity of a family to resist pressures to feel ‘shame’ and relent to the pejorative identities imposed on their child. The families’ perception of the child as an integral member of the family, their use of the ‘family policy’, along with constructions of the child that focus on the humanness of the child, helped not only to resist pejorative labels but also to educate extended family members and the community on ways to accept and include their child.

    In the second chapter, Ankur Madan traces the meanings, history and practices of inclusive education in India. She explores the philosophy, vision and implementation of inclusive education in a specific school set-up. The author highlights the constructive lessons as well as challenges that confront the inclusive education. The author laments the failure to ground arguments about inclusive education in the context of specific kinds of disabilities. A contradiction, for instance, is the case of deaf people who regard special education as a marker of social justice that enables them to assert their identity and develop themselves into a community. Complexity of inclusion therefore is not an easy task in a society where differences need to be taken seriously.

    In the third and final chapter on education, Suchaita Tenneti underscores the emancipatory potential of a structural understanding of disability and responds to Linda Ware, a well-known DS scholar. In her essay ‘Many Possible Futures, Many Different Directions’, Ware (2005) explores the contributions that DS could make to critical special education. She observes that the regressive history of special education with its focus on behaviourist and positivist approaches and the preponderance of the medical model of disability have limited the success of critical special education studies. This is primarily because of the persistence of the term ‘special education’ even in critical appropriations of this body of knowledge. However, DS, she says, can revitalize critical special education by providing an epistemological frame of reference within which fundamental conceptions and assumptions about disability can be questioned. DS carries the potential of transforming disability from a minority discourse to a universal one, thereby countering the reification of disability that takes place within special education. Suchaita mentions different ways in which Ware herself acknowledges the role of the social sciences in constructing disability praxis, especially given the interdisciplinary nature of DS, but ultimately relies on shifting mindsets and diversifying cultural notions about disability as the ultimate means to achieve equality in educational opportunities, which is a flawed approach in the absence of adequate structural and systematic accommodations and changes.

    Arun Kumar and Nivedita Kothiyal, in their chapter ‘Disability at Work: Media Representations, CSR and Diversity’, map and problematize representations in the mainstream media of practices enhancing the employment of persons with disabilities within the private sector in India. Commonly understood as corporate social responsibility and/or diversity management, such practices include, for example, targeted employment schemes, scholarships to individuals working in the private sector for pursuing higher education and livelihood training and skill upgradation programmes for persons with disabilities. They have gained their legitimacy through incentives and promotion by the State; extensive coverage by mainstream media promoting wider adoption and awards and recognitions offered variously and jointly by governments, industrial associations and disability-related organizations.

    The next section focuses on legal discourses of disability in India.

    Part 6: Legal Discourses of Disability in India

    As understanding of disability evolved in India, many landmark judgments were delivered by the appellate courts between 1996 and 2007 under the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, which focuses on the central characteristics of disability jurisprudence. The following two chapters provide an insight into the nature of judicial enhancement that can underscore violations faced by disabled persons. Though the Acts have been enacted and judiciary is playing an important role, but for the full implementation of every law, there has to be social consciousness and awareness in the masses. Also, the law in the form of the Justice Verma committee has been changing the notions of disability and personhood in society. As Saptrishi and Addlakha (2009) point out:

    Concerns on the rights of the disabled in India became visible in the public domain in the 1990s when a cluster of legislations was enacted by the Parliament. These were: Rehabilitation Council of India Act, 1992, Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 and National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999. Earlier, the Indian Lunacy Act, 1912 had been replaced by the Mental Health Act of 1987 which came into effect in 1993. The rise of the disability rights movement and the pro-active role of the United Nations propelled these legislative developments and laid the foundation for nascent disability jurisprudence in the country. The most dramatic development in this regard has been the adoption of the Convention on the Rights of Persons with Disabilities (CRPD) by the United Nations General Assembly on 13 December 2006, which has been ratified by most member states including India.

    The fact that legislations were enacted in many countries is a testimony to the changing paradigm of understanding disability from this new perspective.

    Amita Dhanda contends that the recognition of the voice of persons with disabilities in the CRPD has made it possible to undertake lawmaking from a DS perspective. The chapter, therefore, firstly elaborates on how the absence of this perspective has impacted upon the making of disability laws in the country and next dwells on what a DS-compliant approach would require from lawmaking in India. The author initiates this inquiry by firstly examining the disability-centric legislations subsisting on the statute book before the CRPD. Further, she examines the processes by which lawmaking on disability was undertaken after the CRPD and how despite wide-ranging consultations the laws were not made in accord with the demands of the sector. Since a DS approach would not brook such a consequence, she concludes the chapter by enunciating what procedures would be needed to be adopted for lawmaking to be informed by the insights of DS.

    Rukmini Sen, on the other hand, analyses the concept of care in disability legislation in India. The concept of a caregiver as defined by the PWD Act and the Mental Healthcare Act is itself a new phenomenon in India. It raises questions about the notions of kinship and family and their implications in constructing the disabled legal/social subject. The political economy of care and the construction of women as caregivers are two of the major thrust areas of the chapter as well. She looks at the ‘interconnected’ threads of care and companionship (within the family), which is now part of the Indian legal landscape for persons with disabilities. She foregrounds the 2007 UNCRPD and its provisions. There is, thus, an inherent connect that the disability movement has with many other social movements in India, and the present legislation which is markedly different from the 1995 one owes its existence to this intersecting manner in which disability has emerged as an issue. It is, therefore, important to locate disability and disability-specific domesticities within the kinship matrix. Further, she explores the politico-legal landscape of care and kin/kin-like companionship keeping persons with disabilities at the centre of this enquiry.

    Part 7: Constructing Disability as Diversity

    The final two chapters, written by Shanti Auluck and Anita Ghai, reflect on diversity. Drawing on her own experiences, Shanti Auluck writes as a mother of a son with Down syndrome. Auluck underscores the significance of diversity disability with a special reference to cognitive and intellectual disabilities. She argues that disability is inherent to the human condition and is as natural as any of nature's other diversities. She dwells on Indian philosophical traditions and their acceptance of the existence of multiple realities and perspectives. She also reflects on the concept of ‘suffering’ and the association of disability with suffering. With reference to her own experiences of raising her son and the strong relationship that the two of them share, she asserts that her life as a parent of a child with a disability and that of her son are far from tragedy and suffering. She apparently adheres to the social model's separation of impairment and disability and locates the disadvantages that children such as her son face in oppressive social structures. She reminds us of how eugenics is closely related to PWD. Anita Ghai, on the other hand, writes from a location of a woman with visible mobility impairment. As a DS scholar, she has reflected on the complexity of diversity as an ideology. Diversity is often constructed as a form of restoration and a way of fixing histories of being broken. In the process of unifying people with or without disabilities, this unification is implicated in a biopolitics that purposefully incorporates the ways in which disability is socially, politically and economically produced (in relation to impairment) and which endeavours to erase difference. While diversity incorporates acceptance, respect, empathy and understanding so that each individual is comprehended as unique, the notion of difference gets complicated as there are multiple constituencies that should be recognized with dignity. Logically, we are in accord with the fact that disability can happen to anyone. However, we never encounter the fears that unquestionably operate at the level of the unconscious. While the idea of diversity in theory is enviable, the ground reality is far from desirable.

    Writing this volume has been a very productive exercise. I have had to think through the changing issues and theoretical frameworks, trying to guess as to what themes should be underscored. There have been some limitations in dealing with this subject; moreover, it is impossible for a single volume to do justice to the highly multifaceted and heterogeneous nature of disability. Editing this reader had been a tentative yet a critical enterprise in which I had to combine the ability to assess the past, look at the present and think about the future of DS in the Global South. The reader will, thus, come across both the experiential terrain and theoretical nuances of disability. I hope that this book will be of interest to students, faculty, policy makers, activists and lay readers who are touched by the understanding of disability.

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    Notes

    1 I duly acknowledge my research assistant Suchaita and my colleagues Shad Naved and Sandeep R. Singh for a careful reading of the introduction of the book. Any lapses are mine!

  • About the Editor and Contributors

    Editor

    Anita Ghai joined as a professor in School of Human Studies, Ambedkar University Delhi, in 2015. Before this, Anita has been an associate professor in Department of Psychology in Jesus and Mary College, University of Delhi. Her interest is in disability studies and issues of sexuality, psychology and gender. As a former fellow at the Nehru Memorial Museum Library, Teen Murti Bhavan, Anita has researched on issues of care of disabled women recipients, that is, their daughters and providers of care, that is, the mothers with leanings towards feminist and disability theory. Anita has been the former President of the Indian Association for Women's Studies. She has authored Re-thinking Disability in India, Routledge, New Delhi (2015) and (Dis)Embodied Form: Issues of Disabled Women (2003), and co-authored The Mentally Handicapped: Prediction of the Work Performance with Anima Sen.

    Contributors

    Shilpaa Anand teaches in the Department of English at Maulana Azad National Urdu University (MANUU) in Hyderabad. She has an MA in English from the University of Hyderabad and a PhD in the interdisciplinary programme of disability studies from the University of Illinois at Chicago. In her doctoral work, she explored the conceptual history of disability in the Indian context. More recently, her research has focused on culturally distinct notions of corporeality and corporeal difference.

    Shanti Auluck is the chairperson/founder member of Muskaan, an NGO working for the empowerment of persons with intellectual disability, Delhi. Muskaan (started in 1982) provides vocational training, life skill training and employment along with assisted living facility. It also provides counselling and guidance to parents/families. She as well as Muskaan has been given several awards including National Award in 2006 for best NGO working in the field of disability by the Ministry of Social Justice and Empowerment, Government of India. She taught Psychology at Lady Shri Ram College, Delhi University, from 1976 to 2005. She also published and presented papers on Psychology and Indian Philosophical Thought.

    Meenu Bhambhani is a seasoned corporate social responsibility (CSR) and development sector professional with close to 20 years of experience in creating inclusive solutions for the underserved and unrepresented communities. At Mphasis, she has been leading the CSR function for over 10 years now. She has played a pivotal role in institutionalizing CSR and aligning it with the Mphasis core business and vision. Under her leadership, Mphasis CSR has received wide recognition both nationally and internationally, including recognition by the President of India as the Best Inclusive Employer for Persons with Disabilities.Her background in the development sector is multifaceted. She is a person with disability herself, a professional in the area of human development with specialization in disability studies and social policy. Prior to joining Mphasis, Meenu spent 10 years working in diverse fields including teaching English Literature, implementing policies as Assistant Commissioner—Disabilities with Government of Rajasthan, consulting with the World Bank and advocating/spearheading policy advocacy for people with disabilities through a non-profit organization. She has been a researcher of disability studies and has published scholarly articles in renowned journals and publications. She has been widely recognized for her contribution to the field of CSR and disability inclusion. In 2008 and 2009, she was recognized by the CEO for her outstanding contribution to CSR. In 2010, she won the President's National Award in the category of Best Individuals Promoting Employment Opportunities for Persons with Disabilities.Meenu holds a PhD in English Literature from the University of Rajasthan. She also earned an MS in Disability and Human Development from the University of Illinois at Chicago, facilitated by a generous fellowship from the Ford Foundation.

    Tanmoy Bhattacharya guides research on Syntax, Psycholinguistics, Gender, Disability, Deaf Education and Sign Linguistics, at the Centre for Advanced Studies in Linguistics (CASL), University of Delhi. He has two PhDs in linguistics, one from the University of Hyderabad, India, and the other from University College London, UK, the latter as a Commonwealth Scholar. He has published, till date, 67 journal papers and 4 books, and has delivered 174 talks at different conferences/events, out of which 80 have been invited talks. He is the Project Coordinator of Indo-Norwegian Cooperative Programme project on Syntactic Variation and Language Mixing. His most recent book is The Sign Language(s) of India, 2014. He has been Chief Editor of Indian Linguistics (2014—17), and his most recent writing has been a five-part essay series on ‘Peopling of the Northeast of India’ published since 2016. He has been a convenor member of an UGC Committee on Disability and Higher Education, member Expert Committee for Indian Sign Language, RCI, and the ex-Coordinator of the Equal Opportunity Cell, University of Delhi. Within the field of disability, he specializes in inclusive education, linguistic stereotypes and prejudices, and disability studies. He has worked on exam policy and produced blueprints for equal opportunity cells and disability studies centres at universities for the UGC.

    Fiona Kumari Campbell researches with the School of Education and Social Work, University of Dundee, Scotland, and is an Adjunct Professor of Disability Studies, University of Kelaniya, Sri Lanka. Her work is concerned with the production of Disability and Abledment from within a frame of Studies in Ableism. Additionally, Campbell works around decolonized knowledge related to atypical bodies in the South Asian context.

    Upali Chakravarti is with the Department of Elementary Education, Miranda House, New Delhi. Her area of work and research is disability, care work and education.

    Jagdish Chander is an Associate Professor of Political Science at Hindu College, University of Delhi. He earned his PhD in Disability Studies from Syracuse University, Syracuse, New York, under which he has documented the history of disability rights movement, particularly the self-advocacy movement of the blind in India. Dr Chander has contributed several chapters in edited books published by leading international publishers and has presented papers on topics related to disability rights and disability legislations in several national and international conferences. He is currently engaged in writing the biography of the late Shri Lal Advani, who is considered to be the founding father of modern rehabilitation services for the disabled in India.

    Sameer Chaturvedi graduated in Sociology (Hons), Department of Sociology, Hindu College, University of Delhi, New Delhi, post-graduated in Sociology, Department of Sociology, Delhi School of Economics, University of Delhi, New Delhi, Master of Philosophy in Sociology, Centre for the Study of Social Systems, School of Social Sciences, Jawaharlal Nehru University (JNU), New Delhi. He submitted his MPhil Dissertation entitled ‘“Disability” between Models: A Sociological Exploration (2015)’. He is working as a PhD Research Scholar (JRF) since January 2015 in Centre for the Study of Social Systems, School of Social Sciences, JNU, New Delhi, the title of his PhD thesis being Disability, Desire and Relationships: A Sociological Exploration.

    Amita Dhanda is Professor of Law at NALSAR, University of Law in Hyderabad, India. Her work on the rights of persons with psychosocial disabilities contributed to the discourse on legal capacity in the UN Convention on the Rights of Persons with Disabilities. Subsequently, she has actively engaged in the law reform process in her country to bring the Indian law in conformity with the UN Convention. Professor Dhanda believes in the pluralizing of inclusion and multiplicity of voice, and her work on disability and gender is an effort in that direction. In her book Legal Order and Mental Disorder (SAGE, 2000) and all sub-sequent writings, Professor Dhanda has demonstrated how the law is both an instrument of exclusion and empowerment.

    Nandini Ghosh is Assistant Professor of Sociology at Institute of Development Studies Kolkata. She has a bachelor's degree in sociology from Presidency College, Kolkata, and a master's degree from Calcutta University. She completed her PhD in social sciences from the Tata Institute of Social Sciences, Mumbai, in 2008. Her areas of interest are qualitative research methodology, sociology of gender, marginalization and social exclusion and social movements. She has published a monograph Impaired Bodies Gendered Lives: Everyday Realities of Disabled Women (2016). She has coedited a book titled PratyahaEveryday Lifeworlds: Dilemmas, Contestations and Negotiations (2015). She has also edited another volume Interrogating Disability in India: Theory and Practice (2016).

    Nidhi Goyal is a disabled feminist from India. Working at the intersection of disability and gender, she is committed to changing the lives of women and girls with disabilities. Nidhi's work spans research, writing, training, campaigns, advocacy and art. She is the founder and director of Mumbai-based non-profit organization Rising Flame working for persons with disabilities with a focus on women and youth with disabilities. Nidhi has been appointed to the prestigious civil society advisory group of UN women's Executive Director, sits on the advisory board of Voice, a grant making facility by Dutch Ministry, and is the President elect of the AWID (Association for Women's Rights in Development) Board. Finally, she is India's first-ever female disabled stand-up comic artist who uses humour to challenge prevalent notions around disability, gender and sexuality.

    Niluka Gunawardena is affiliated with the University of Kelaniya and the National Institute of Social Development as a visiting lecturer. She is also a secondary teacher at the Colombo International School, Sri Lanka. Niluka is committed to developing holistic models of inclusive education based on South Asian epistemologies. She is currently involved in the ‘Play for All’ campaign, which is aimed at creating inclusive parks and play environments for children with all forms of abilities in Sri Lanka. She does independent research on sexual and reproductive health and rights of disabled women as well as disability in a gendered post-war context in Sri Lanka and is actively involved in promoting leadership and advocacy skills development among disabled youth. She is currently exploring modes of empowerment through the arts in collaboration with multi-disciplinary allies in her country.

    Hemachandran Karah teaches English Literature at the Humanities and Social Sciences faculty, IIT Madras. He specializes in Literary Disability Studies and Medical Humanities.

    Nivedita Kothiyal is currently an independent researcher and teaches part-time at the University of York. Until recently, she was an Associate Professor at Institute of Rural Management Anand (IRMA) in India. She holds a PhD in Human Resource Management and has over 15 years of experience in research, teaching, consultancy and training. Her research is interested in decent work, gender and diversity management, workforce development and skill building, and corporate social responsibility. In her research, she draws on postcolonial theory and critical management studies. Her research has been published in field-leading journals, including the British Journal of Management and Indian Journal of Industrial Relations, and edited volumes including Undoing Boundaries and The SAGE Handbook of Qualitative Business and Management Research.

    Arun Kumar is a Lecturer in International Management at the University of York, United Kingdom, where he also serves as his department's Equality and Diversity Champion. He researches the history of development and management in India with a particular focus on large philanthropic organizations. His research has been supported by Economic History Society, UK, and Rockefeller Archives Centre, USA. He is currently working on a research monograph titled Re/Imagining Modernity about the history of Indian elites’ philanthropy in the ‘long’ Indian 20th century. Arun holds a PhD from Lancaster University, United Kingdom, and previously, he has worked as a development consultant and researcher on questions on social justice and inclusion, governance and accountability, and programme planning and evaluation.

    Santosh Kumar is an Assistant Professor at the School of Business Studies and Social Sciences, CHRIST (deemed to be University), Bangalore. He teaches in Master Programme in English with Cultural Studies and Bachelor Programme in English Studies. He is a doctorate in Linguistics from the University of Delhi. He has taught Professional Communication, Human Values and Professional Ethics in National Institute of Technology Delhi. His areas of interest are disability studies, gender studies, sociolinguistics and paremiology. His doctoral thesis explored the representation of disability and gender in some of Hindustani proverbs.

    Ankur Madan is an Associate Professor at the School of Education, Azim Premji University, Bangalore. Here, she teaches in the Masters Programme in Education. She has a masters’ in Child Development and a doctorate in Child Development from the University of Delhi. She has taught in various institutions such as the University of Delhi, American University of Kuwait and Department of Psychology at CHRIST. Her areas of interest are childhood studies and inclusive education. Her doctoral work explored the scope of implementing inclusion in the regular school system in Delhi. She has coedited the book titled Childhoods in India: Traditions, Trends and Transformations. Her publications are mostly in the area of inclusive education and childhood studies.

    Deepa Palaniappan is State Disability Consultant for Bihar Rural Livelihood Mission JEEViKA, Government of Bihar and Disability Resource Person with Odisha Livelihood Mission, Panchayati Raj and Drinking Water Department, Government of Odisha. With academic training in both political science and special education, she has engaged with disability-related fieldwork through her work and research endeavours in Bihar, Jharkhand, Madhya Pradesh, Assam, Odisha and Tamil Nadu. She has also undertaken pro bono documentation work with various grassroots disabled peoples’ organizations with commitment to train community-based organizations in the disability sector to document and historicize their field-based interventions.

    Janet Price is a disabled feminist based in Liverpool, UK, having links to Taranaki, New Zealand. She is an activist and writer, and has over 30 years association with India, through friendships and social justice work.Trained as a medical doctor, Janet worked in Public Health in the UK and India, and as a researcher/academic, she was based at Liverpool School of Tropical Medicine. She retired due to disability associated with multiple sclerosis and became an honorary research fellow there, maintaining awareness of academic/health developments through membership of the LSTM's Gender Group and Liverpool University's medical humanities and sociology network. She has built connections with disability activists/organizations around sexual health/disability/gender in Africa/South Asia and globally.Janet writes blogs, discussion and research papers and is committed to producing work with others. She is on the board of DaDaFest, a disability and deaf arts organization in Liverpool which has a growing global reach. Recently, DaDaFest has been working to develop local festival plans with disability artists/activists in India/South Asia and with African colleagues, and its work shares ideas about interdependence, support and rights through theatre, dance, visual/video art and music, presented live and online.

    Shridevi Rao received her PhD in Special Education from Syracuse University, New York, in 1996. She is a Professor at the Department of Special Education, Language, and Literacy at The College of New Jersey. Her interests include cultural constructions of disability, disability and development, disability studies in education, and inclusive education. She has conducted ethnographic studies that focus on families’, teachers’, and teacher candidates’ constructions of disability. Along with Maya Kalyanpur, she has coedited the book titled South Asia and Disability Studies: Redefining Boundaries and Extending Horizons. Currently, she teaches both undergraduate and graduate courses in education.

    Valerian Rodrigues is currently Ambedkar Chair at Ambedkar University Delhi. He has earlier taught at Mangalore University and the JNU, and was a National Fellow of the Indian Council of Social Science Research. He has published extensively on political ideas and public institutions in India

    Asha Singh had been teaching at the Department of Human Development and Childhood Studies at the Lady Irwin College for about three decades. Her doctoral work used methods of theatre to explore sociocultural contexts, teacher-taught relations and perceptions of school. She guided masters’ students to develop child appropriate methods in researching with children. Her interests are early childhood care and education, arts in education, children's orientation to play and working with teachers in these areas to deepen understanding of inclusive practices in the classroom. She also has taught arts and its significance for early learning to graduate students at Azim Premji University as well as at the National School of Drama at Tripura. She also developed and guided curriculum and content for children's educational television series Galli Galli Sim Sim emphasizing inclusion and diversity.

    Sandeep R. Singh is an Assistant Professor in Comparative Literature and Translation Studies at the School of Letters in Ambedkar University Delhi, India. His current area of research interest includes disability studies, narrative discourse and life-writing. He also teaches in the area of Indian Writing in English with an emphasis on partition literature, romanticism and comparative literature.

    Someshwar Sati is presently an Associate Professor at the Department of English, Kirori Mal College, University of Delhi. He has done his MPhil and PhD from CES, JNU, on the Indian English Novel. His research areas include Postcolonial Theory, The Indian English Novel: Midnight's Children and After, Disability Studies and Theory, Disability in Translation, Translation Studies, The Victorian English Novel and the 20th-century English Novel. He has also been awarded the CDN Prize for the best paper presented at the IACLALS 2016 conference organized by IACLALS and the Department of English, Kakatiya University, Warangal.

    Rukmini Sen is an Associate Professor at School of Liberal Studies, Ambedkar University Delhi. She teaches courses in law and society, relationships and affinities, women's movements, gender and society. She has been actively associated with various women's rights and disability rights organizations in Kolkata and Delhi. She is professionally attached to the Indian Association for Women's Studies, Indian Sociological Society and Law and Social Science Research Network. She is currently part of a UGC UKERI research project Teaching Feminisms, Transforming Lives that Ambedkar University Delhi and University of Edinburgh, UK, are collaboratively pursuing. One of her most recent publications is ‘Women with Disabilities: Cartographic Encounters with Legal Interstices’, Indian Anthropologist (2016, 46 [2]: 75-91).

    Suchaita Tenneti is currently pursuing an MPhil in sociology from the JNU, New Delhi. She is specializing in disability studies with a focus on educational issues pertaining to disability and queer disability studies.

    Shubhangi Vaidya is a sociologist by training and teaches at the School of Inter-Disciplinary and Trans-Disciplinary Studies at the Indira Gandhi National Open University, Delhi. She has published in the areas of disability and gender studies and is the author (with Anu Aneja) of Embodying Motherhood: Perspectives from Contemporary India (SAGE Yoda Press, 2016) and Autism and the Family in Urban India (2016).


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