Rethinking Disability in India 113802029X, 9781138020290

Moving away from clinical, medical or therapeutic perspectives on disability, this book explores disability in India as

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Table of contents :
Cover
Half Title
Title Page
Copyright Page
Dedication
Table of Contents
Foreword
Acknowledgements
Introduction
One An Autobiographical Note: My Own Journey
Two Conversations about Disability: The Cultural Landscape
Three Understanding Disability: Slippery Ropes
Four At the Periphery: Marginalized Disabled Lives
Five Mystifying Realities: Right to Life
Six Theorizing Disability
Seven Politics of Identity: Oppression and Resistance
Eight Need For a Paradigm Shift: Conceptualizing Disability Studies
Bibliography
About the Author
Index
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Foreword

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Rethinking Disability in India

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Rethinking Disability in India

Anita Ghai . . . argues powerfully for a paradigm shift in the way disability has been viewed historically . . . She argues . . . that all of us must collectively challenge the hegemony of ‘normality’ and patriarchy that have denied autonomy, equality and selfhood to the differently abled, bridging the gap between the disability movement and women’s movement to ensure rights for all. Uma Chakravarti, Former Professor, Miranda House, University of Delhi. [T]houghtful, insightful and filled with compelling new ideas. It is a fresh look at an emerging field just at a point when more critical and profound thinking is greatly needed. Highly recommended. Nora Ellen Groce, Leonard Cheshire Disability & Inclusive Development Centre, University College London

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Rethinking Disability in India

AnitA GhAi

LonDon new York new DeLHI

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Rethinking Disability in India

First published 2015 in India by routledge 912 Tolstoy House, 15–17 Tolstoy Marg, Connaught Place, new Delhi 110 001

Simultaneously published in the Uk by routledge 2 Park Square, Milton Park, Abingdon, oxon oX14 4rn

Routledge is an imprint of the Taylor & Francis Group, an informa business

© 2015 Anita Ghai

Typeset by Shine Graphics A–8/249 east Gokalpuir, Amar Colony Delhi 110 094

All rights reserved. no part of this book may be reproduced or utilized in any form or by any electronic, mechanical or other means, now known or hereafter invented, including photocopying and recording, or in any information storage and retrieval system without permission in writing from the publishers. British Library Cataloguing-in-Publication Data A catalogue record of this book is available from the British Library

ISBn 978-1-138-02029-0

Foreword

For MY FATHer who never saw my impairment as a problem and whose internal image will continue to enable me to be who I am today

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Contents Foreword by Dan Goodley Acknowledgements Introduction

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One

An Autobiographical note: My own Journey

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Two

Conversations about Disability: The Cultural Landscape

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Three

Understanding Disability: Slippery ropes

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Four

At the Periphery: Marginalized Disabled Lives

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Five

Mystifying realities: right to Life

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Theorizing Disability

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Seven

Politics of Identity: oppression and resistance

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need For a Paradigm Shift: Conceptualizing Disability Studies

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Bibliography About the Author Index

327 355 356

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nita Ghai’s work has been required reading for many students and scholars of disability studies over many years. I, along with numerous others, will welcome this new book. Ghai brings many challenging considerations to the studies of impairment, disability and disablism. She is an outspoken and immensely well-read activist and scholar. She brings these qualities to her writing that is driven by an accessible style and theoretically divergent interests. I only have space to reflect on four distinct elements of her writing that mark Anita Ghai as one of the most original writers in disability studies. I hope, in some small way, this foreword acts as an invitation to engage with this exciting new book. First, Ghai’s writing emerges from the periphery. Her groundbreaking text (Dis)Embodied Forms: Issues of Disabled Women (2006) was one of the first concerted attempts by a scholar–activist outside of the western europe and north America (wenA) to intellectually break with unquestioned norms and assumptions of what we might term ‘wenA disability studies’. It is fair to see that eight years on since (Dis)Embodied Forms, disability studies is still often centred in rich nations’ academic circles. True, there have been many attempts to decentre disability studies. The work of writers such as emma Stone, M. Miles, Soya Mori, osamu nagase, Tsitsi Chataika, Helen Meekosha, and Shaun Grech are just a few of the names of scholars seeking to contest the eurocentric and western foundations of much sociological and political analyses of disability. Anita Ghai has emerged as one of the leading proponents of such critical de-colonizing thinking. writing from an Indian context permits Ghai to recognize the cultural, economic and historical complexities of disability and impairment. As she writes in this book, ‘the comprehension and meaning of disability in India has been understood as embedded in multiple cultural discourses that are subtly nuanced’ (see Introduction). This allows Ghai to examine contested and controversial issues of mercy killing, religion and spirituality, tradition and community alongside wider global issues of medicalization, administrative definition and measures of disability and difference. She makes those of us writing in wenA feel

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uncomfortable: demanding us to think of the dangers of centering disability analyses only in the confines of our own cultural and national contexts. It is no surprise to see Ghai at the forefront of recent initiative such as the new open access journal Disability and the Global South (see http://dgsjournal.org/). Second, Ghai writes as a critical psychologist. This is unique to a field of study that has been dominated by sociological and cultural studies authorship. But Ghai is no simple, mainstream run-of-the-mill psychologist: she is a critical psychologist — critical of the dangers of totalizing psychological theories that individualize the problems of everyday life and critical, too, of the social, cultural and political foundations of much of what counts for everyday psychological processes. I personally found (Dis)Embodied Forms to be one of the first texts to really take seriously the psychological register in relation to the phenomenon of disability: not as a tragic-obsessed, pseudomedicalized register but as one which allowed us to think of the personal–social, private–public elements of what it means to live in a disabling society. Ghai picks up where she left off in (Dis)Embodied Forms by weaving together cultural, social and psychological themes, ranging from cultural conceptions of karma, historical Hindu mythological representations of disability, psycho-emotional aspects of living in a disabling world to gendered relationalities of community life. we are provided with very nuanced understandings of fate, charity, giving, and recognition. Throughout the volume, the use of psychological concepts and ideas are made with a strict adherence to recognizing the dominant cultural imaginary. As she writes in this text: my contention is that whether it is disability or so some other form of marginalization, the significant question is how we accommodate this difference. In the specific historical context of the neo liberalism which attaches value to individualism and not inter-dependence, the disabled person is perceived as having a deficit (Chapter Four).

Third, Ghai writes as a (disabled) feminist (living in India). Diverse feminist theorists such as Audrey Lorde and Mairian Corker are used to equally powerful effect in this book, suggesting a breadth of scholarship and reading that is deeply impressive. In a true intersectional manner, and reminiscent of other previous work (Ghai, 2002, 2006), it is not that Ghai wants to suggest that disability or gender is more important than the other. rather, she wants to see

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the ways in which the two reproduce one another in complicated and multiple ways. This intersectional attitude can be found throughout this book and will be a welcome addition to recent feminist writings by writers such as Carol Thomas, Tanya Titchkosky, rosemarie Garland Thomson, Jenny Slater, and Donna reeve. Indeed, I would suggest that this book holds the potential to be a key defining text of feminist disability studies. Indeed, this text demands feminist disability studies to engage with the ambitions and desires of disabled feminists of colour whilst, at the same time, pushing (Indian) feminist scholars to address their disavowal of disability. This is a brave text as difficult issues connected with genetic testing, end of life decisionmaking and parental responsibilities are tackled full on. Fourth, Ghai writes as a story-teller. This book starts with Ghai’s very personal memoirs. we are transported back to specific times and places, of growing up in India and of a family engaging with the realities of disability and impairment as they are understood and responded to by communities. This very beautiful use of storytelling — a defining feature of Ghai’s presentations and lectures for those of us lucky enough to have witnessed them — demonstrates the analytical potency of narrative. Ghai’s stories capture what the French sociologist Daniel Bertaux described as the dual elements of a good story: a sense of an individual life lived against a wider socio-historical landscape. Hence, in this often emotional account, we hear of Ghai’s personal and familial lives being lived against wider supra-national and national discourses of normalization, medicalization and psychologization. As with other writing (Ghai, 2012), she is keen always to foreground her own personal, local and national context though ever mindful of other more globalized and pan-national narratives. Characteristically and in true fashion, Ghai refuses to be pinned down to, or penned in, simplistic understandings of disability. In Chapter Three she asks the following questions around defining and diagnosing disability: Thus certain questions need to be articulated. For instance, who has the power to name? who seeks diagnosis and why? How reliable are diagnostic systems? what part does diagnosis play in the maintenance of professional power? what role does diagnosis play in creating potentials and restricting possibilities for disabled people?.

Alongside these troubling, taken for granted notions of disability and impairment, Ghai is also keen to turn our attention to education,

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employment and advocacy as key elements of a politics of disability in India and beyond. There is plenty in this book for scholar–activists who are keen to engage theory with political activism. As she states in the start of the last chapter ‘the previous chapters are a record of the lives of disabled people in India who have lived and continue to live a difficult life’. Clearly, she is keenly aware of the terrors of disablism. Simultaneously, I feel that Ghai shifts disability studies into an interesting space. As she states in this book ‘my contention is that indeed “disability” as a social category is problematic, though beautiful but extremely complex’. The notion of disability as beauty resonates with recent crip and phenomenological writings of people such as robert Mcruer, katherine runswick Cole and rod Michalko who have insisted that we desire disability’s potential to disrupt and make us think again about what it means to live in society. As she writes later in this book ‘my fantasy is that disability is a critical modality which can enlighten the constructed identities in a way that it of course provides possibilities for emancipation of those who are “disabled” by society’s view of them, but also those who are unwittingly trapped in their “normality”’. Ghai offers us an affirmative and productive view of disability because, as she concludes, ‘as with gender, race, sexuality, and class: the constituency for disability studies is everyone. To understand what disability is to understand what it is to be ‘fully human with full humanness’. Any engagement with humanness will inevitably lead to debate and disagreement. There is plenty to debate and dis/agree with here. And, for these reasons, I thank Anita for continuing to push us to think (again) about disability. August 2013

Dan Goodley Professor of Disability Studies and education, University of Sheffield

RefeRences Ghai, A. (2002) ‘Disabled women: An excluded Agenda for Indian Feminism’, Hypatia: A Journal of Feminist Philosophy, 17 (3): 49–66. ——— (2006) (Dis)embodied Form: Issues of Disabled Women. new Delhi: Shakti Books. ——— (2012) ‘engaging with Disability with Postcolonial Theory’, in D. Goodley, w. Hughes and L. Davis (eds), Disability and Social Theory. London: Palgrave.

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discontent for the last almost 10 years following the rejection of disability has brought these issues into the forefront of academia. It is my contention that disability can be understood in more than one way. The present endeavour is an attempt to examine the issues surrounding disability based on my understanding and learning over the last 15 years. Although I officially started writing my book in 2005, I would consider only the last four years as the crucial writing period. I could not have done this without the assistance, affection, critique, and love of my friends and family who energized me into engaging with the understanding of disability. I would like to express my gratitude to the publisher routledge who has given me the opportunity to share my thoughts with academia, students as well as advocates of disability issues. I am really grateful to omita Goyal, who initiated me into the process of writing, and truly appreciate her unconditional friendship, both in joyous and in my difficult moments. Several people have played a decisive role in assisting me in completing the present book. while I would like to thank everyone who has been associated anyway with the process of writing this book, some need a special mention. First and foremost, I am deeply indebted to Vandana, for standing by me throughout this endeavour, both as a very dear friend and for copy-editing the pages and pages of manuscripts I kept throwing at her. Her blunt and honest criticism helped me shape this book in the way it stands today. Her contributions, detailed comments and insight have been of great value to me. Any lapses are my own! I wish to recognize rachana who is always there. I don’t even know where to begin to thank her. Her friendship is both an intellectual support as well as emotional comfort. It would not have been possible to explore critical questions on gender, disability and psychology without rachana’s co-operation, support and unconditional love. Mairian Corker’s loss has been really painful, but her immense contribution in connecting me with disability writing will always be there with me.

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Perry’s loss makes me sad, but its lived moments pre-empted my pain at the time of chemos and radiation. To Perry personally, I could not express my appreciative thanks but her image is always alive within me. Susan Gabel and I are very far, in physical distance, but I know that her friendship is always a part of my life. She has always helped me in every possible way. I got to know Tanmoy in 2009. It was affection and intellectual connection at first sight. now I cannot visualize my academic and active efforts without his support. Janet Price is so close to all our endeavours of understanding disability. You are a blessing for me. Thank you, Janet! one person who should come to India is Dr Gregor wolbring. Gregor, my friend, thank you for making me understand that I could come out of the ‘mainstream’. There are other friends such as enakshi who emerge out of the blue when I am in a real state of desperation. Her incisive comments are really a great help. I need to thank people who kept sending me books and journals but more importantly provided the inner conviction that we, the disabled, need to share what we know about disability and its lived reality. Prof. Alex Lubet made it possible for me to get rare journal articles. Had it not been for him, my present efforts would have been halfbaked. Appreciation is also due to China Mills, Derick Bird, Joy Fillingham, Gail eva, Carol Hamilton, Janette welsby, and Margo Milne. I hope I have not forgotten to recognize and thank any one, but if that is the case, my sincere apologies in anticipation. I am really appreciative of Jesus and Mary College, University of Delhi, where I teach. Had it not been for the college’s permission, I would not have been in a position to carry out my fellowship in nMML, Teen Murti, which enabled me to work on my research. I must express my sincere gratitude to my fellow scholars who were my colleagues at the nehru Memorial Museum Library (nMML) from July 2009 to July 2011. Their presence at the seminars, encouragement and camaraderie proved fulfilling and refreshing. These newfound and some revived friendships will stay with me and be my support in my work on disability. I need to thank my friends and colleagues in Manchester Metropolitan University. They provided me with a wonderful opportunity to interact with scholars and students on issues of

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disability. Had it not been for the intellectual support, love and affection of Prof. Dan Goodley and Prof. erica Burman, I would not have had the opportunity of sharing the camaraderie with both of them. Prof. Goodley, or as I started calling him Dan, realizing that in his presence and absence, is someone I can always look forward to keeping in touch with and counting on for energy and support. Prof. Dan Goodley also enabled my meeting with my dear colleagues Prof. Carol Thomas, Dr Hannah Morgan, Dr Donna reeve and many others in Lancaster, Sheffield and windsor who have now come to be my friends. I would not have had the opportunity of sharing my thoughts and ideas. I am grateful for the love and affection of Prof. Ian Parker and Dr rebecca Lawthom. Finally, my family who has supported me unquestioningly and unconditionally in all that I have done. words can never do justice to their contribution. My brothers ravinder and Sandeep who come to my rescue in every crisis, minor or major. Thanks are due to both my sisters-in-law Mini and ritu. I want to publically acknowledge their love and support through my various illnesses. Their wonderful cooking is the food for my soul that enables me to think and write. My wonderful nieces Shreya, Sukriti and Aakriti are my life support. kush, I am really thankful to, as you are always responsible for everything — from rescuing and retrieving my ‘lost’ work on my laptop to scanning and printing. Last but not the least, heartfelt thanks to my mother. As we know mother-daughter relationships are ambivalent. Mom and I are always on a roller/coaster ride. A big argumentative fight can be heard from the top roof. At the same time I am always anxious, fearful and I keep praying that nothing should happen to her. I pray that unlike the fight we had, my relationship with her will never come to a standstill. no matter how scary or intolerable the relationship may be, there’s not even a remote chance of getting off it. This is forever. And for this I have to say ‘Thank you Mummy’.

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y present effort, Rethinking Disability in India, comes 11 years after I published (Dis)Embodied Form: Issues of Disabled Women, where my endeavour was to locate disability within the feminist discourse and to address the relevance of recent feminist theorizing to the lived experience of India’s disabled women. over the years, as I have engaged in further research, it struck me that even though personally I see gender and its relationship to disability as salient, the general discourse in disability, especially in India, has not reached a juncture where specific realities are addressed by it.1 For me, the goal of academic discourse in disability is to address epistemological questions that reframe disability. Historically, the intelligentsia as well the community has not questioned the ‘naturalness’ of conveying inferior and defective personhood to individuals with such physical and cognitive impairments. In this imaginary, impairments become sources of conflict, tragic outcomes and pity rather than access points of different phenomenological life worlds. As I report in my personal experiences, during childhood and adulthood, societal responses to disability have affected my life as well as the lives of my fellow disabled. Disabled people exist in every community throughout the world. The fact that there are about 650 million people with disabilities has perhaps come to the forefront with the passage and ratification of the first ever United nations (Un) Convention for protecting the rights of persons with disabilities all over the world.2 on 13 December 2006, the Un General Assembly adopted the declaration of providing equal rights to disabled people.3 Globally, too, the socio-economic situation of disabled people has changed; however, the situation is far from desirable.4 In a recent book, Goodley (2011: 1) indicates that most impairments (nearly 97 per cent) are acquired rather than congenital (born with), while world estimates suggest that one in 10 persons is disabled, that is, a figure of around 500–650 million disabled people across the world (see http://www.disabled-world.com/disability/ statistics/[accessed 21 January 2014]). This figure is expected to rise to around 800 million by 2015 (Peters et al., 2008). Currently,

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150 million of these are children (Grech, 2008) and it is estimated that 386 million of the world’s working-age population are disabled (see http://www.disabled-world.com/disability/statistics/ [accessed 21 January 2014]); further, 88 per cent live in the world’s poorest countries and 90 per cent of those in rural areas (Marks, 1999). It is, therefore, clear that a significant reason for this is the failure to realize that no one is immune to the possibility of becoming disabled. Such denial, thus, creates the situation where universally the aged along with disabled children, women and men lack access to basic human rights and, instead, are marginalized, excluded and discriminated against. 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 a historical perspective. It is reported that the 1980s saw some educational and rehabilitative services being launched (Chauhan, 1998: 46); the year 1981 was declared as the International Year of Disabled Persons by the Un, which renewed the efforts to rehabilitate disability. The intervening period saw sporadic attempts aimed at rehabilitation both by disabled people and by non-governmental organizations (nGos). Though the experience of oppression is an integral and internal part of the psyche of the ‘affected’ and is seen to be without any social or political ramifications, the primary aim is service delivery. with advances in the ‘scientific’ understanding of the causes of impairment, the magic band shifted from religion, charity and human rights to medical science’s ability to rehabilitate and cure the disabled. It is important to note that within India the first statutory body was called the rehabilitation Council of India (rCI), which started functioning in 1992.5 The rCI undertakes standardization, regulation and monitoring of the training of professionals in the field of rehabilitation and special education; promotes research; maintains a register of rehabilitation professionals; and prescribes a code of conduct and ethics for these professionals, among other tasks. It is clearly evident that the rCI continues to replicate the narrow vision of negotiating with the disabled people as its mandate recognizes disability as a ‘disease’. The most significant Indian legislation entitled ‘Persons with Disabilities Act’ (equal opportunities, protection of rights and full

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participation) was passed by the Government of India in 1995.6 The third one is the ‘national Trust for the welfare of Persons with Autism, Cerebral Palsy, Mental retardation and Multiple Disabilities Act’ (act 44 of 1999). The national Trust is an autonomous organization of the Ministry of Social Justice and empowerment, Government of India, set up to work for the welfare of persons with any of the four disabilities mentioned (see http://www.thenationaltrust.co.in/ nt/index.php?option=com_content&task=view&id=94&Itemid=14 3 [accessed 21 January 2014]). I have discussed these acts in greater detail in subsequent chapters. notwithstanding the legislations, the Indian State continues to be largely apathetic. owing to a complete lack of public planning, responsiveness to any special condition, such as disability, is missing. Consequently, the physical environment is largely inaccessible and inconvenient. Simple activities such as going to the post office or servicing a laptop become excruciatingly difficult. Dissemination of information in formats accessible to people with sensory impairments is very restricted. For instance, there is a single televised sign-language news bulletin per week for people with hearing impairments. The range of accessible reading materials for people with vision impairments also is extremely limited. The non-availability of other assistive technology devices such as electrically powered wheelchairs, at affordable prices, adds to the miseries experienced by disabled people. However, unlike the west, the understanding in India does not differentiate between impairment, disability or handicap and uses the terms synonymously, with a firm cultural grounding in destiny. Although professional workers are trained in medical categories and treatment regimens, they might have little understanding of the everyday experience of living with various disabilities. Thus, they are specifically concerned with the ‘usual’ manifestations of the condition or the ‘typical’ reactions people are alleged to have. How does it feel not to move? How is it painful and what is it like to not feel, are not asked. Disabled people and their impairments are understood to be the forerunner of dispute rather than embodying human difference. The potential of people who live with impairments is labelled as ‘special’ group knowledge, not empirical knowhow as in the lifestyles of other marginalized groups. As wittgenstein cautions ‘the aspect of things that are most important for us are hidden because of their simplicity and familiarity (one is unable

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to notice something because it is always right before one’s eyes)’ (quoted in Scheper-Hughes, 1992). It is important to underscore the fact that disability has not been considered as a knowledge-base in the social sciences, arts and humanities in the same way that caste, gender, race, sexuality, and sexual orientation have established their broad significance. Addressing the notion of ‘special needs’ is often done by taking an able-bodied participant to be the ‘blind person’ by placing a blindfold over his/her eyes or when an able-bodied individual is put in a wheelchair as part of training. In other words, we know that disability training is based on the so-called standard bodies which are middle/upper class adults, usually able-bodied, heterosexual males. Any other modes of embodiment would imply non-standard, thus, ‘special’. Historically, society has constructed disability as a problem, which exists within the person and the goal is to ‘cure/fix’ the person. A country which finds itself immersed in multiple issues, such as decreasing sex ratios, violence against women, increasing fundamentalism, the menace of HIV, unavailability of education, and the continuous withdrawal of the state support from public health programmes, it becomes even more crucial for people to engage in social movements.7 Though these movements have dealt with many issues of exclusion, disability has appeared like a nonessential issue, as the academia as well as activists stress that there are far more serious issues that need attention. reactions ranging from downright hostility to patronization, along with confusion as to why interrogating the category of disability is common. People-oriented movements have highlighted oppressive structures and given voice to marginalized communities; however, these voices do not include the knowledge-base of disability. notwithstanding the sincerity of all these collective efforts, what happens in actuality is that appealing to exclusionary identity categories becomes more and more urgent. Thus, the movements as well as policy responses frame the issues in such a way that two diametrically opposed (and ultimately untenable) ways of thinking about identity categories are offered. The failure to question the terms of the opposition has made the identity politics debate seem irresolvable. Intellectuals in academic councils understand that rehabilitation issues are synonymous to the concept of disability. It is so intriguing that when an able person wears sports shoes, they are not called ‘mobility aids’. Sports shoes are to be worn ‘normally’ to play a cricket game (or sports, in general); however, canes,

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wheelchairs and braces are unique ‘mobility aids’, rather than just being ‘normal’. Disability, therefore, cannot be comprehended in a linear fashion. Traditionally, the comprehension and meaning of disability in India has been understood as embedded in multiple cultural discourses that are subtly nuanced. within the dominant Indian cultural ethos, labels such as ‘disability’, ‘handicap’, ‘crippled’, ‘blind’, and ‘deaf’ are used synonymously. The assumption of the labels’ naturalness is unquestioned. The roots of this assumption lie in the ideology that conceives of disability as inherent in the mind or body. whereas one strand (of cultural construction) associates disability with a ‘lack’ or ‘flaw’ that leads to a significantly diminished capability, another understands it as associated with deceit, mischief and devilry. Disabled people sometimes are depicted as suffering the wrath of God and being punished for misdeeds that either they or their families have committed — a kind of penance or retribution for past misdeeds. Yet another strand conceives of disability as eternal childhood, where survival is contingent upon constant care and protection. Here, the emphasis is on images of dependency, thereby reinforcing the charity/pity model. Historically, children and adults with disabilities have been ‘normalized’. They were/are visible within the context of family, largely treating disability as ‘some problem’. Thus, normality or being normal was determined and informed directly by the community or the family’s ideas. The tendency was not to [re]define disability. within the family, disability was expected, accepted and identified with. It was, therefore, an unintentional security against degrading disability. In India, the disabled would get some respect in terms of familial respect, even the construction is that ‘s/he is God’s gift and should be looked after comfortably without giving any responsibilities!’ The well-meaning intention, however, can create a ‘learned helplessness’ in the disabled person preventing him/her from becoming autonomous. The concept of cultural understanding is discussed more extensively in Chapter Two. Yet another strand portrays the disabled as capable of heroic efforts that result in overcoming the disability, setting an exemplary standard for others to follow. This list, though not exhaustive, illustrates the underpinnings of a negative cultural identity attributed to those with disabilities. needless to add, the objective of all these images is to posit disability as an oppositional category of normality. It is interesting that except for God’s will all other factors are indeed

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responsible and do become the bedrock of an oppressive society (Singh and Ghai, 2009). In a culture that valorizes perfection, all deviations from the perfect body signify abnormality, defect and distortion. Conveying feelings of inability and uselessness, disability epitomizes ‘failure’ and is conceived as a personal tragedy. Labels such as bechara (poor thing) accentuate the ‘victim status’ for the disabled person and the roots of such attitudes lie in cultural conceptions. Destiny is thus seen as the culprit and disabled people are the victims. The common perception is that disability is retribution for past karma (actions) from which there can be no reprieve. Perhaps, this notion was instrumental in the widespread belief that disabled people are seen as better dead than alive. I discuss the idea of karma in the second chapter, that is, the dominant cultural construction in India looks at disability as an essential characteristic of a sinner, which has to be endured as penance in the present life. In a culture where there is widespread female foeticide, killing imperfect children will not even count as a crime. The general response of society ranges from pity and charity to hostility, anger, banter, and ridicule. Very rarely has the public response been positive. It is not implied here that individuals and their families have not challenged these dominant constructions. rather, their resolve to fight is met with implicit and explicit negative messages from the community, which signify the futility of their efforts. Disabled people want to live a life no different from anyone else. However, they fully realize this must be done within the boundaries of limitations. The influence of global agencies, such as the world Health organization (wHo) and the Un, was significant in bringing about a change in the terminology used to define disabling conditions. As a result, terms such as ‘mentally challenged’, ‘visually impaired’ and ‘physically impaired’ came to replace the more trite, negative usages such as ‘retarded’, ‘cripple’ or ‘lame’. Indian writings in the rehabilitation field came to include this change in congruence with international standards (Ghai and Sen, 1996; Sen, 2000). However, social and cultural perceptions did not change. As I have written elsewhere: ‘however, what is amazing is that the most forward looking social movements since the post-Independence period, be they focused on political issues, exploitation of labour, feminist agendas or issues of environment excluded disability as an axis of social categorization’ (Ghai, 2003: p. 16). That the west’s

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experience is not very different is clearly reflected in Marta russell’s writings — ‘it is disheartening, to say the least, when I can still pick up a book or read a call for unity to fight for social justice which omits or does not give equal weight to the disability social movement against oppression’ (2004). Another feminist writer, Janet Price says, obesity, malnutrition, cancer, infectious disease, arthritis and accidents — these all contribute to a far from stable and ‘unmarked’ body . . . Disability is something that touches us all, here and now, in our daily life and through the choices we make about what we eat and wear, and how we travel . . . It is no longer a choice as to whether we address disability in our thinking, but an imperative (2007: 87).

Therefore, a thorough public exploration of the violence and discrimination against disability has not really come forth in citizenship and the more important political discourse, therefore, is, how does one institute this category in social and political discourse? expert knowledge is very different from experience knowledge (Seymour, 1989). I am not suggesting that medical or social paradigms should be given up. It has offered a lot to people with impairments; indeed, it makes it possible for people to live productive and gratifying lives with impairments that once would have killed them. The question is: what are the implications of the medical paradigm as a mode of interpretation? The suggestion that the problem resides entirely in a defective body puts a burden on disabled people as it is then expected that they adapt themselves to their given environment. The disabled person’s functioning in society is tied to the extent their impairments can be normalized. what is critical is that the built environments have no understanding of bodily multiplicity, thereby producing ‘standard-fit’ designs. The everyday reality of the built environment for disabled people — of physical and attitudinal barriers which thwart their effortlessness of mobility and access — is not comprehensible. In India, for instance, a majority of homes are not wheelchair accessible while accessible public transport remains a fantasy.8 To think of friendly pavements is an exception rather than a rule. while a change has been evolved with the help of international rights instruments, it was the Disabled Peoples’ International, a network of national organizations or assemblies of disabled people that were established to promote human rights of disabled people through full participation, equalization of opportunity and development.

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Unlearning of the medical model theorization — that understands a disabled person’s problems as attributed to the lack of rehabilitation, people in the west as well as India perceive both physical and psychological barriers that disable them and curtail their life chances. These difficulties are included in school and higher education, in finding work and suitable work environments, accessing leisure and entertainment facilities, using private and public transport, obtaining suitable housing, or in their personal, filial and social lives. Thus, an important paradigm shift has taken place in the approach of dealing with disability issues, bringing in a change from explanations based on medical interpretation and welfare to the rights-based approach. The move towards the social understanding of disability is based on the premise that structural inequities are responsible for disability. For example, a person in a wheelchair is not always disabled but only when he or she is unable to climb stairs. If an elevator or a ramp is put in place of the steps, the individual no longer experiences a ‘disability’. This paradigm shift, thus, allows for differences in ability and other characteristics to be appreciated as secondary to initial perceptions of bodily differences. while disability was previously seen as a static feature of persons with impairments, which must be accepted and could not (in principle) be changed significantly, the social definition allows for identifying the social and physical barriers, which limit the opportunities of full participation in society for those with illness and impairments, and tries to mould these contextual barriers. The fact that legislations were enacted in many countries is a testimony to the changing paradigm of understanding disability from this new perspective. The social model of disability has made a distinction between the physically-based ‘impairment’ and the socially-created ‘disability’. This has provided both theorists and activists with an effective starting point to construct the diversity of disability as a part of the continuum for augmented access to social resources, the right to live independently and autonomously in mainstream communities, and the possibility of creating more realistic identities. Thus, disability is an identity, not just a medical problem, and a field appropriate for wide-ranging intellectual inquiry. According to Stiker, [the] thing has been designated, defined, framed. now it has to be scrutinized, pinpointed, dealt with. People with ‘it’ make up a marked

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group, a social entity . . . For the disabled, henceforth of all kinds, are established as a category to be reintegrated and thus to be rehabilitated. Paradoxically, they are designated in order to be made to disappear, they are spoken in order to be silenced (1999: 133–34).

Clearly, this approach has important implications. For instance, the fight for the inclusion of all children, however severely disabled, in mainstream education systems, will not make sense unless the differences between the ‘social’ and the ‘medical’ or individual models of disability are understood. The notion of discrimination is the key here, that is, disabled people do not face disadvantage because of their impairments but because of the way we organize schools or deny admissions to the disabled candidates. Mahesh, a disability activist (2008) examines the questions that need to be transformed.9 He says: questions usually addressed to persons with disabilities such as ‘when did you become disabled?’; ‘How did you become disabled?’ should make way to discussions and finding solutions on questions such as ‘Are you getting the freedom and choice to live the way you want to at home and in society?’; ‘Does your house/educational institution/place of work have provisions to enable you to access the toilet safely/independently?’; ‘Are you able to make use of public transport?’; ‘Are you able to get education on an equal footing, like everyone else?’; ‘Are you getting opportunities for gainful employment?’; ‘Are you able to benefit from the different government development schemes?’; ‘Do you get an equal share in the property?’; and ‘Are you being restricted from setting-up your own family?’

I believe the important question is what do ‘equal rights to access’ actually signify? Despite efforts by activists across the world, I often wonder whether equal opportunity legislations have actually led to a decrease in inequities that the disabled experience in social, political and economic institutions. I begin this book by providing connotations attached to disability and I stress that as a social category, its understanding is problematic and extremely complex. It is, in particular, a slippery and potentially unrestrained category. what I am suggesting in the present book (divided into eight chapters) is that disability is an epistemology. This is not to suggest that we do not have to fight in terms of changed

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public perception, legislations and policy implications for creating a disabled-friendly world. Such an attempt can only be a miniscule interjection in the serious debate on disability. Chapter one, ‘An Autobiographical note: My own Journey’, shares my experience of growing up with a disability. The reader will get a glimpse of the vivid reality of being mobility-impaired and its relationship with cure. My attempt is to highlight the body and the self, which has gone through not only polio but also other experiences of heart surgeries, breast cancer and a stroke. I have lived through difficult times but have resisted and never given up on hope. Chapter Two, ‘Conversations about Disability: The Cultural Landscape’, gives a brief overview of the perceptions of disability in India. I underscore the theory of karma and provide a sketch of sacred texts, such as the rig Veda, Upanishads and the Manu Smriti. I also look at discourses of charity, compassion and duty. Finally, the attempt is to comprehend representations of disability through mythology. The roots of understanding and portraying disability need to be deconstructed. Chapter Three, ‘Understanding Disability: Slippery ropes’, focuses on stressing the complexity of the question of who is disabled? The chapter considers various definitions of disability to understand the recurring debates between notions of impairment, disability and handicap, arguing that neither impairment nor disability/handicap can be defined in purely biomedical terms, because the biological and social are interactive in creating and preventing both. Significant questions arise, such as who defines disability and for what purposes, and what could be the ramifications of leaving certain categories (such as mental illness) out of the ambit of legislation? Finally the chapter turns to issues of identification — who identifies her/himself as disabled, who is identified by others as disabled, and how these may be in conflict — and political issues of disabled identity, including whether ‘people with disabilities’ is a meaningful category at all. Voices of disabled people have been included in this chapter to substantiate the arguments. Chapter Four, ‘At the Periphery: Marginalized Disabled Lives’, underscores the need to understand that disabled people experience exclusion in society because of the stigma attached to disability as well as the invisibility of their disabled lives. Further, the aspiration

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is to highlight poverty, which creates systemic exclusion of disabled people from the core institutions of contemporary society, education and employment in particular. I also give focus on the oppressive nature of society by concentrating on the gendered nature of disability and issues of sexuality. Chapter Five, ‘Mystifying realities: right to Life’, considers some complex issues, such as mercy killing, prenatal selection and cochlear implants. In India, prenatal selection on the grounds of sex is banned. However, selection on the basis of disability is permitted. The debate about whether the choice of selection on the grounds of disability should be legal or not evokes mixed reactions. The existing arguments suggest that prenatal screening is not understood in any uniform way, either within feminism or the disability movement. Similarly, cochlear implants do not have a clear basis for debate. The increased interest of disabled people in such issues is an indication that they are most affected by these. A closer look, however, reveals that very little dialogue exists between disabled and non-disabled people on these issues. Chapter Six, ‘Theorizing Disability’, traces the emergence and development of what has become known as the ‘disability theory’ and, in particular, stresses on developing and evolving the discourse on critical disability issues. The chapter attempts to understand disability from different vantage points. My aim is to reflect on the paradigm change of existing theories per se. The need of the hour is to establish disability studies in India not as a full-fledged discipline, focusing on in-depth scholarship. research in the domains of disciplines such as psychology and social work has been mostly empirical in nature. My objective is to draw the socio-cultural factors that are in interaction with biological differences, which create disability. The theme in this chapter is to establish disability as a paradigmatic category, which can counter the myths associated with disability. The problematic issues involved in formulating any one understanding of disability will also be discussed. Chapter Seven, ‘Politics of Identity: oppression and resistance’, discusses the issues of identity with reference to disability. within the discourse, the need to understand the nuances of engagement with ‘difference’ is critical. while a hierarchy of oppression can be established, the question is about its efficacy in resolving the crisis of lives that are oppressed. The reader will find that I offer

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no single answer, as my attempt is to engage more with the tensions that need to be sensed in order to evolve a more inclusive theory and practice. Chapter eight, ‘need for a Paradigm Shift: Conceptualizing Disability Studies’, takes up the issues of ‘othering’, metaphors that guide disability and the need for paradigm shift. The idea is to evolve an epistemology of disability through the tool of disability studies. My aim is to underline disability studies (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 disability studies is a corrective endeavour to rectify the misinterpretations of disability. The present book is written as a critical engagement with a perspective on the appreciation of disability as a social, cultural, and political phenomenon, as opposed to the clinical, medical or therapeutic perspectives. Disability as epistemology would validate the fact that it is not a characteristic that exists in the person, but a construct that finds its meaning in a social and cultural context. In academics, disability will be interconnected with different disciplines, such as psychology, history, sociology, literature, political science, law, policy studies, economics, anthropology, architecture, and gender studies, among others. In the last two decades or so, literature on disability has been evolved in such a way that scholars of disability studies strongly emphasize that disability is not a ‘deviance’, but a characteristic or a ‘difference’, which should be accepted as a part of diversity in society, just like race, caste, class, and/or ethnicity. The reader will, thus, come across both the experiential terrain as well as theoretical nuances of disability. Last, but not least, I hope that this book will be of interest to activists and lay readers involved with the disability movement.



notes 1. At the outset, I have to admit that though the vantage point for me are the innumerable ‘people stories’ and voices of those with a range of disabilities, the lens through which they have been projected and presented

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5.

6. 7.

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is obviously my own. I am bound to shift back and forth between my own location as a researcher on disability issues with a background in psychology, as an activist with the disability movement and as a disabled person. I share these perspectives not to invoke sympathy for lives that are rendered impaired and deficient, but to fulfil the need for academic inputs. The lack of will to rethink, re-look and re-conceive the notion of disability among academicians, during the course of my interaction at a host of seminars, continues to bewilder me. Barring a few feminist scholars, most others have been reluctant to regard me as a disability studies scholar and tend to cast me as someone who wants to draw political capital out of an existential condition. I am aware my obsessive concern with disability activism in academics taxes the intellectual imagination since it is so much easier to understand class, caste and gender-based inequalities. This book is, therefore, an attempt at engaging with the various issues relating to disability. The Convention’s objective was to give a human rights instrument with a clear social development dimension. It adopted a broad categorization to reaffirm that all persons, with all types of disabilities, must enjoy all human rights and fundamental freedoms. Ironically, it was on 13 november 2006 that a group of visually-impaired men were lathi-charged by the Maharashtra police in Mumbai for protesting against the blatant discrimination and sheer exclusion by the state government. over the last two decades, there has been a vast amount of experience gained and knowledge shared between communities and disability organizations, both at local and international levels, on the issue of disability. The rehabilitation Council of India became a registered society in 1986. In September 1992, the rCI Act was enacted by the Parliament and became a statutory body on 22 June 1993. The mandate given to the rCI is to regulate and monitor services given to persons with disability, to standardize syllabi and to maintain a central rehabilitation register of all qualified professionals and personnel working in the field of rehabilitation and special education. See the details of the Act in Chapter Three. Social movements have been defined in a number of ways — as a vehicle for change for disadvantaged and subjugated groups, as an avowal of community, and as networks of interactions where political or cultural conflict is engaged in by people or groups with a shared collective identity. when the Delhi Metro operations began in west Delhi, it was a dream come true for disabled people. Ankur Dhir, a resident of Paschim Vihar, goes to karampura in west Delhi. A motorized wheelchair user, suffering

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from muscular dystrophy, Ankur is no longer able to travel on his own by the metro system: now I find it extremely hard to travel by the metro and prefer private transport instead, as the maintenance of the stations is a deterrent for accessing the stations has become a major problem. At many stations, the ramps leading to the premises are broken and it is not easy to drive one’s wheelchair in. Then, at stations like rajiv Chowk, one finds cars blocking the exits. while people on foot are able to negotiate their way through, I have often got stuck there with my wheelchair (see The Hindu, 20 January 2011). Based on my personal experiences of living as a disabled woman in a society that defines ‘normal’ as being ‘able-bodied’ and those who deviate from this highly-valued norm as being ‘abnormal’. Disabled people often find that they remain outsiders for even those who are themselves rejected and marginalized by the privileged. 9. Personal communication with Mahesh Chandrashekar, an activist working in CBr network (South Asia), Bangalore. It is an international nGo working towards the networking of all nGos active in the field of community-based rehabilitation and education of persons with disabilities, women and rural development.

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An Autobiographical Note: My Own Journey writing on disability is like fine bone china — it demands a certain delicacy. Many disabled writers (or those who choose to write on our behalf) collapse into fake cheerfulness, or anti-climax — or employ a style that is icy, dispossessed, separated from the heart. A worthy writer must show us the good as well as the ghastlies — infections, aging, the unexamined hostility of society — without getting maudlin, without descending into fake heroics, without the chill of unrelieved anger. L. w. Milam1

H



ow come you had polio? were you not you vaccinated? why were your parents not more careful?’ These are some questions that always haunt me. of course, there are many others, such as ‘why me?’, that all of us always ask ourselves. But what can one reply to these questions? In an effort to defend my parents, and indeed myself, I respond by reeling out factual information about the polio vaccine coming to India in 1959, one year after my birth. There was little that my parents could have done. But the fact remains I am a ‘marked person with polio’. Hence, while the blame game, with my parents being part of the narrative, did not seep into my consciousness, the awareness about disability did. Slowly but surely I became acutely aware of not just my own disability but also of others who were confronting this reality in their lives. Disability involves not just the physical limits that are connected with a body that tends not to function in a ‘normal’ way, but also constitutes the disabled person’s predicament about the sense of self. In situations where persons have been ‘normal’ before and disabled later, it is the sense of self that compares its former self. I have no memory of an able body. Hence, the world that I registered gave me a message that to be disabled is to be defective. It is a place where disability maybe endured but in a conclusive analysis, it is intrinsically disapproved of. not surprising therefore that it took me a long time to own my polio and disabled body and accept that I was disabled but not ‘defective’.

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Like all children I had formed my own reasons for justifying my condition. My aunt (my mother’s sister) had lost her husband very early. My cousins (her children), therefore, were growing up without their father from a very early age. In my mind, I had decided that nature does not give everyone everything in full. we must lose some to gain others. My cousins had to lose their father. I had to lose the full use of my legs so that I should have my father alive and with me. It was price I was paying to have my father with me and was happy to do so. This helped me in owning my disability. As disabled persons, we are products of an ideology of normality where communication of messages of the able body is a constant in any society. As a result, a disabled person is constantly in a mental state of deferral, awaiting the day the body will not just be mended but cured. Until then, the disabled tend to impersonate the abled-bodied. They are considered disembodied as it is implicit that running away from the body will act as a disruption towards those incorporating qualities of social demeanour. rehabilitating the body, thus, becomes the constant theme of the story in the lives of the disabled. The quest for process of cure, therefore, has often been a long-drawn-out costly process and doomed to failure in my view. ‘Cure’ is, therefore, an archetypal reality that the disability theory interrogates to understand the impact of the cultural history of polio on individuals. Telling one’s story from the debris of memories with assistance from free associative recall (with due thanks to psychoanalysis) of my memories has been useful. Thus, during my growing years (and often now as well), I have been constantly reminded of this sense of lack of cure. My family and I have spent an unwarranted amount of time attempting to be cured of the ‘disease’. while I was not left out in the familial interactions, the discourse within the family as well relatives and friends was of curing the ‘poor girl’; itni soni hai par dekho na kismet ko (she is so pretty but look at her luck), was what I have grown up hearing. Disability records not only the pain and anguish of disabled lives, but families and their disabled children both learn to resist the stigma of disability. My family was equally affected by the polio story, and the theme song was ‘quest’ that is, searching for cures of every kind.2 I am not sure whether my parents prayed to God to assist in overcoming the challenges posed by my disability but both of

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them were religious Arya Samajis.3 In terms of their Hindu worldview, they understood the three major elements, that is, moksha (salvation), dharma (pre-ordained duty) and karma (action) with which a child grows up, leaving possibilities for fluid and changing identities in adulthood. For a Hindu, the focus is on karma with the implication that adequate provisions for the child are a duty, whether the child is abled or disabled. karma is the concept of ‘action’ in contradistinction to ‘faith’ advocated by religions such as Christianity and Islam, which view all human predicaments as the will of God as opposed to present and past life actions. However, in the Hindu worldview humans have free will to choose their own actions, which require only the will of God to implement karma’s consequences. Presumably, the understanding of parents with disabled children is that the karmic effects of all deeds are viewed as actively shaping past, present and future experiences. Inextricably linked to the idea of Samskaras (mental impressions of any action), karma puts the destiny of an individual in his/her own hands. To quote Swami Vivekananda: ‘if what we are now has been the result of our own past actions, it certainly follows that whatever we wish to be in the future can be produced by our present actions’ (kapleau, 2013). The cultural and religious rendering of disability leads to an obsessive hope and search for cure. I always believed that my parents were rational but I also realized the search for a cure for your child can make parents behave in the most irrational ways. while providing for me as a disabled child, the family lived with this notion of karma and never stopped the search for cure. My parents’ search for my cure took them to both scientific medical treatments as well to traditional, indigenous methods. From personal experience I can say that it can take years to banish associated anxieties and apprehensions that results from undergoing these experiences. Cure from pain and suffering has been a major preoccupation of Indian society. Across the 56 years of my life, I have negotiated with shamans, gurus, ojhas, tantric priests, and faith healers, as well as miracle cures — all to ensure that I could become an able-bodied person finally! My first recollection is when, as a child, I was buried neck-deep in such a ‘curative’ mud at the tender age of eight during a solar eclipse. I clearly recollected how my mother sat next to me reading

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from the Hindu scripture the Bhagavad Gita, oblivious of my discomfort and anguish with throngs of people watching this peculiar state of affairs. My trauma remained suppressed for a long time and it was only in later years through psychoanalysis that some of the traumatic memories resurfaced. My story finds resonance in the lives of many other children. The stories of belief in miracle cures were seen again when the longest solar eclipse of this century occurred on 22 July 2009.4 The morning newspapers reported its association with superstition and the belief that many children were believed to have been born disabled because of the negative effects of an earlier solar eclipse. Consequently, many parents accepted that the only way they could hope to wash off this ‘sin’ was by exposing the disabled child to another solar eclipse. As a result, in many parts of India, children aged two and seven years were buried in sand up to their chins, with the consent of the parents, in the belief that during this eclipse, the ‘holy mud’ would cure the children of their mental and physical disabilities. Such miracle cures continued to be reported in the press, especially since a child, who had been unable to move her legs and hands earlier, evidently had recovered and was able to use her limbs after she was buried in the mud during the eclipse. The burial in mud during the eclipse was not the last of my encounters with such curative treatments. At a later stage, in my teen years, my parents took me to the Balaji Temple in Mehandipur,5 a famous Hindu pilgrimage centre in rajasthan, India. It was believed that people came to Mehandipur in search of a cure from affliction by malevolent spirits or ghosts (bhoots and prets) as well as to perform daily rituals on behalf of those who were held to be suffering from ‘spirit malaise’. It is believed that the deity has divine powers to cure a person possessed with evil spirit. Hundreds of sankatwalas (the reference to ‘possessed’ people in the local language) throng the temple every day to offer prayers and take a look at the image of the God. The belief is that the insane and possessed person is cured by the blessings of Lord Shri Balaji. The treatment included reading holy texts, following a strict vegetarian and simple diet. I was also made to keep heavy stones on my body, arms, legs, and chest. At this temple, I also saw that some people were shackled in chains, which I later understood to be a form of treatment for serious possession by a spirit that makes the ‘victims’ violent. As a child I remember being traumatized by this sight and at the thought that the temple authorities might chain me too.

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In yet another instance, I recall going to Sohna after school, which meant spending three hours everyday with my parents and sometimes with my father on a motorcycle. Sohna, then a small village near Delhi, is famous for its sulphur springs, which are believed to have curative qualities for various stress-related ailments. These springs are located at the base of a vertical rock covered by a dome believed to have been built in the 14th century. The medicinal properties are tapped in the local spa while maintaining a specific temperature range. I was made to bathe here in the hope that the sulphur water would take away my polio and make me whole again. even mild cures, such as hot water baths in the month of June (peak summer in Delhi with temperatures over 40°C), after which my mother would massage me with hot oil, were painful. when my father’s cousin brother suggested urine therapy, my parents and I did not entertain the idea as we found it repulsive and disgusting. Disability is viewed to as inherently undesirable, reinforcing the idea that it has to be cured, overcome and vanquished. In a way, all these degrading cures created a resistance in me to challenge this dominant ideology — that disabled people are defective and need to be repaired. My family and I took a long time to accept that my disability was permanent and unchanging and different from ill health, which could be corrected or cured. Having reconciled themselves to the permanency of my condition, my parents turned with equal single-mindedness towards my education and career. Both spoilt and coddled, I looked upon polio as my cross to bear and as a gift. However, the challenges that my physical condition presented continued and had to be coped with. As a young girl I remember falling down on innumerable occasions. The physical hurt, though tough at times, was always less painful than the look of fear on the faces of those around me. In an effort to understand my pain and be rid of it, I would conjure up different stories; my fantasy was that my condition could disappear in a variety of ways — by praying hard, a chance earthquake in which I would fall and get up as a non-disabled person. every night (before bedtime) I would think of a fairy who would tell my body that when it woke up, the polio would be cured. But the following morning I would again open my eyes to the reality of my life.

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Spending a lot of time with my grandmother meant listening to stories that were rooted in the predominant north Indian culture. These stories were deeply entrenched in my mind and I gradually came to accept that suffering was a part of every person’s existence. one of the most important stories was of the Buddha,6 which (for me) became symbolic of the experience of suffering and its containment. In my formative years, this helped me believe that suffering was normal and disability was a ‘form’ of suffering, inherent in every human being. Thus, I became both a threat and a reminder of imperfection — to myself and to those around me. not surprisingly, the child in me as a polio survivor had several questions, which my parents had to deal with constantly. My parent’s way of resolving my questions was with counter questions — I often asked my father, ‘why me?’ His reply usually would be, ‘why not you? Are you God’s gift?’ I am not quite sure I understood the question or the answer but it definitely raised more questions and awareness. In the following chapters I hope to establish that disabled people are fully human and do not need a cure from disability. Instead, they need empathy and support to be able to lead their lives. Indeed, my own life has shown me this. while these ambivalent attitudes of my family and well-wishers are, no doubt, rooted in the fantasy of the ‘able-bodiedness’, it was reassuring that my family had not rejected me. It was a manifestation of their love and unconditional support, which left no stone unturned to find a cure for my condition. The role of family and friends in this long and lonely journey of accepting as well as negotiating disability is critical. These negotiations are not just my own family’s experiences, but it is a clear reminder of disability as a dominant ideology of ‘ableism’. To me what it means to be human and what kind of cultural and implicit societal values are appreciated, raise innumerable questions about life. The extended family was a great source of strength as well for bringing in a sense of normalcy into my life. As a child, I was not given any ‘special’ treatment and was included and accepted in all family activities. I truly believe that my parents helped me learn some very powerful values at a very young age — the determination to strive and to thrive. Thanks to the loving care of nurses and doctors, I recovered with negligible limitations. a somewhat shorter right leg and foot. It is the reason that I do not question whether I would be as independent or self-fulfilled as I am and fully functioning. The only reason

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I was special to my family was because I was the first child and a girl born after almost five decades, although they were concerned about my welfare and my challenges arising out of it. I can’t remember any family member ever listing out do’s and don’ts with regard to my disability. In fact, I went on many trips within and outside the country on my own, even with a full leg cast on, after breaking my leg again. They were concerned but let me go. And, indeed, they continue to encourage me to live my life on my terms. I know there are times when my mother and my brothers wonder about what I do, or why I do what I do, but they never say, ‘Don’t!’. That is my biggest strength and support. In my adult life I tried very hard to put disability behind me and was not viewed as the ‘other’ by my teachers and colleagues with whom I worked with over the years, especially in my college. It helped me understand how illness is given significance and, consequently, comprehended and experienced through socio-cultural processes. In retrospect, I think that neither my family nor my colleagues and friends pitied me. This is important as pity can impact in many debilitating ways. It can result in a life of complete dependency, taking away any initiative or autonomy. Indeed, if it had been left to my grandmother, I might not be where I am today because she would have turned me into an autonomous person with a crystal clear identity of my own. Being pitied can also lead to a sense of low self-worth and a lot of bitterness, which I have seen in people with some form of disability. And this bitterness colours everything in their lives. In my life, the recurring worry about disability had to be ignored and relegated to the realm of, what Freud so aptly has termed as, the ‘unconscious’. As a result, in my growing years, I was in denial and did not accept disability as a part of my identity. obsessed with the notion of overcoming, unlike the expected social norm of submission to my condition, I refused using assistive devices such as the wheelchair. At that stage, I even looked at crutches as signs of defeat, of not overcoming polio, and as something to be avoided at all costs. There were times when I would be enraged when people offered to carry me up the stairs. I have mellowed over the years and have a much better understanding of people’s perceptions. now, I smile gratefully and accept or reject these offers contingent on my understanding of the giver of the offer.

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nonetheless, access still bothers me. I have countless instances of assurance for a conference or seminar that the place is on the ground floor. ‘It has just three steps’, I am told. Three damned obstinate steps and a metal barrier dividing the doorway, making it far too small for the wheelchair to fit through. Small needs, such as going to a local shop, can be difficult as most places are not wheelchair accessible. even with a motorized wheelchair, navigating the kerbs is not always easy. Uneven ground, passing pedestrians, cars, buses, auto rickshaws, and cycles whizz past inches from me as I try, with rising panic, to desperately work out the kerb cuts. Though conscious of the public eye and the confusion, which would often result as I transgressed many of the limits that society imposed on my ‘kind’, I continued to be an active, independent and mobile individual. Today, after two decades, my wheelchair has become the source of my liberation. Slowly but surely culture stamped me with the identity of being a disabled person. Like all families, mine, too, was a product of a given culture. My parents clearly understood that in a patriarchal milieu where arranged marriages are the rule, non-availability of the traditional role would be extremely difficult. I now understand that what the family sanctioned was worked out as a strategy. It became clear to me that the idea of a liberated family was illusory. Consciously, I took up the positions which repressed the womanhood in me by picking disability activism, academics and interest in cricket and movies. I cannot say that this was my resistance as I did not realize that I was unable to accept myself as a sexual being. Though the personhood was active the understanding that culture would not give me traditional locations was dormant within me. The predominant Hindu tradition and culture defines women within a matrix or roles that are relational in nature. Their identity is solely determined by their relationships to the significant others such as the father, husband or son. My spaces were contained in my father’s home. The socialization process, which is derived from the practices of gender inequality, was subtly translated into my everyday life. what I found hardest to reconcile was that I would not ever be a mother — an identity I would have loved to have. within the dominant Indian ethos, to be a mother was the greatest achievement as a woman. each day that passed before my second heart surgery, my yearning for a child was accompanied with a stabbing sense of loss. However, it is also a culture which privileges

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only legitimate motherhood. Any desire to have a child out of wedlock is deemed to evoke further stigmatization. Although I thought seriously about adoption, my family did not seem too happy. As a result, I was denied the possibility of this very prestigious role as marriage and motherhood are both difficult aspirations. while it is perfectly justified for feminists to engage with the issues of natural and constructed motherhood, the pain and agony of not being able to have a child was demoralizing. The notion of beauty and femininity was yet another area that I needed to confront with disability in a predominant north Indian culture which valorizes attractive and beautiful women. I am fair — something my north Indian background cherishes and marks as a sign of beauty. But my gait did not conform to feminine ideals of beauty. I still remember that as a child when I expressed my desire to wear tights or long pants, this idea was interpreted by others as my need to hide my braces and, thus, cover my disability. I came to believe that was true too. The normalization process, therefore, was not really a resistance as I was referring to the need to speak and bring myself into the public domain. According to Foucault, The dominant society [epitomized] this enclosed, segmented space, observed at every point, in which the individuals are inserted in a fixed place, in which all events are recorded, in which the slightest movements are supervised . . . in which power is exercised without division, according to a continuous hierarchical figure, in which each individual is constantly located, examined and distributed among living beings, the sick, and the dead (1977: 197).

Though accustomed to talking about my experience with polio, I struggled to speak about its effect on my body, family and future. I never wanted to be identified with it — I didn’t want to be singled out for who I was because of my condition. Thus, for me, the comprehension and meaning of disability had to be negotiated as embedded in multiple cultural discourses with subtle nuances. Coming to terms with the conflicting social imagery about disability and the reality of my condition has been a long and lonely journey. Towards the end of 1980, I came into contact with the early understanding of the difference between impairment, disability and handicap and, finally, the disability rights movement. other disabled people, such as a couple of friends in my neighbourhood, helped me

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survive the overriding polio narrative of ‘overcoming’ and adopting the identity of the disability rights activist. This enhanced my sense of independence and personhood. However, my independence/dependence, in the physical world remains fluid. After I started driving the hand-driven car, my mobility pattern got transformed. I was elated! However, the aftermath of the post-polio syndrome mandated the use of a wheelchair. The reality of my driving conversely is contingent on caretakers to assist me in getting my wheelchair out of the car. For a stranger, this transgression is very difficult to understand. one moment you are autonomous, able to deal with life, the next you are at the mercy of the caretaker, enhancing the experience of helplessness. Poise or self-respect is, therefore, always at stake. There I am, out in the world driving, competing with the speed and zeal of the non-disabled and immediately, a flat tyre can turn me into a pathetic cripple. It is important that walking and wheeling give the disabled the extra bonuses. For instance, Charles Mee, a polio survivor described in his autobiography how subtle and complex the activity of walking could be: I am an expert in surfaces. I can tell you, by its foot feel, within a margin of error, roughly how old a given stretch of asphalt road is, just how long ago a hardwood floor was polyurethane. on the beach, I know, by how far my crutch tip sinks into the sand, about how long ago the tide went out and left the beach to dry (1999: 110).

Just as I was beginning to find peace with the challenges of disability, another shock came along in the form of a rheumatic heart disease, followed over the years by several medical episodes that have not just challenged my own being but also raised many questions about the power and status of the medical profession as well as health care for the disabled. In november 1968, I got sick with what my general practitioner thought was an acute throat infection. But I didn’t recover. I would complain about palpitations and in a couple of weeks, I was told that I had rheumatic heart disease. After hospitalization, I felt as if I’d entered a parallel world away from school and movies. I started living with frequent eCGs and went ahead with my life, ignoring small but significant danger signs. However, in 1980, my heart decided to give a different signal. I dismissed it thinking that it may have been because of a change

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in medication that my heart was beating at 140 beats per minute (bpm) or so. But I still needed to be tested and a new eCG had to be taken. My family too went along with me and did not take these signs too seriously. As soon as my father came home, I was eager to look at the report but the shock was too much when I found that literally the whole family was crying. Since my father was not the kind of person to break down about small things, I knew something was wrong. I kept asking him over and over again what was wrong but he kept weeping and saying, ‘nothing is wrong Anita’, which I knew was a lie. After about 20 minutes he told me that I would need heart surgery. Due to our negligence, the mitral valve had got damaged, resulting in the first open heart surgery for the replacement of the valve. what is significant is that the surgeon asked for a tissue valve. I should qualify that this tissue valve replacement meant that I did not have to take blood thinners, as long-term use of blood thinner medicine carries a risk of serious bleeding complications. However, the doctor did not bother to inform my father that such tissue valves require another valve surgery. Consequently, the valve gave way and in 1988, I underwent an urgent second heart surgery to get a mechanical valve. now I need constant life saving medication, such as anti-coagulants. I was saved but my whole experience left me with questions about the power and status of the medical profession and also about the social and political basis of any illness. I have come to believe that the position of medical professionals is itself a result of the socially institutionalized power to understand illness and consequent treatment, and needs to be interrogated. when I realized that I was close to death, I found myself trembling and could not believe that I had to undergo this trauma. when I was alone, I mourned and grieved. It was funny because I suddenly thought of kubler ross’s stages of grief — denial, anger, depression, and acceptance. I was hoping that by the following morning I would have reached the acceptance stage, so that no one took away my hopes, aspirations and dreams. Though we see being baldness in men all the time, a women’s greatest glory is her hair. It was not very easy to communicate to family and friends that I am going to be bald after the chemotherapy. Perhaps, the able-bodied also carry an anxiety of instability of their own bodies. Thus, during my growing years (and often now as well), I have been constantly reminded of this sense of lack. with a body that was/is socially stigmatized as ‘the other’ and

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labelled as disabled,7 the dilemma had been about whether to situate myself as a ‘positive mind’ or a ‘negative body’. It took much longer to regain my emotional equilibrium after discovering how easily my strength and stamina could be exceeded. I just wanted to ‘pass’ as a ‘normal’ person. Therefore, I lived in associations and spaces between these states of invisibility and visibility, normality and disability. The fact that these binaries build and inform each other is never critically examined. The questions and answers are always in conflict. How does one negotiate and mediate these dilemmas? once I become aware of my conscious pain of being a visibly disabled person, I started coping with the experiences of medical professionals and healers, seers, shamans, and astrologers. As Arthur Frank puts it, when we feel ourselves being taken over by something we do not understand, the human response is to create a mythology of what threatens us. we turn pain into ‘it,’ a god, an enemy to be fought. we think pain is victimizing us, either because ‘it’ is malevolent or because we have done something to deserve its wrath. we curse it and pray for mercy from it. But pain has no face because it is not alien. It is from myself. Pain is my body signalling that something is wrong. It is the body talking to it, not the rumblings of an external god. Dealing with pain is not war with something outside the body; it is the body coming back to itself (1995: 30–31).

Throughout my illness, I mourned but I never lost my sense of humour or my ability to smile. I must acknowledge, though, that most people made life easy for me. It was important to be able to laugh at the craziness of life but that was easier said than done. I imagined that nothing had changed. It was interesting that my family, though in despair, found within themselves the capacity for creating a playful approach to my illnesses. each member had a list of proverbs, jokes and punch lines about the realities of life. every human being begins life in a completely dependent state, often undergoing experiences of shame and loss of omnipotence. The realization that human minds and bodies are always in a state of transition is clearly evident — when human beings move from an incomplete, imperfect and vulnerable existence to a seemingly more complete or more perfect existence. However, the transitions were problematic as losses were escalating. However, with the change, I was also now in a position to offer some help to the doctor–patient relationships, in contrast to polio

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where the doctor who operated on my leg did not remember the relationship and also because doctors at that time never thought of consulting me. This is not to suggest that medical tyranny was benign, but there were some individual doctors who did establish a playful relationship with me. The standing joke was that I would blame him — ‘when you check my pulse as it is my heart beat increases!’ I realized that medical examination is always complicated. As Diprose would say, ‘bodies that touch are also touched’ (1998: 37). Thus, the medical encounter8 disrupts the usual notion of subject/object that marks the distinct relationship between the doctor and the patient, which is neither closed nor self-contained, but becomes open to the world of the ‘other’. However, it was not the end of my ‘medical journey’. Having gone to a health conference, I decided to go for a mammogram. I took the test with the belief that nothing was wrong — all women must get mammograms done. of course, the test would be benign. As I was in the process, the senior doctor requested me to take another test. By that time I was frightened and vulnerable, a scared child concealed in the tired body of a woman pretending to be self-assured. The test report confirmed the fact that I definitely have second stage breast cancer. Trauma was really an understatement. The report devastated my world. It was as if cancer broke up my fused thread of temporality — past converted into the present, and the future lost all its significance. Disability and cancer changed my relationship with my body. My intermittent fight with polio was not as terrifying, daunting and inexplicable as cancer. Psychologically a taboo word, it took me time to understand that the body needed to move on and work through to overcome the ‘reality’ of cancer but accepting a new mode of living was not easy. Cancer created questions; some of the hidden realities of my body were to become even more transparent that polio could ever make them. I had to acknowledge that this time my enmity was with a formidable foe. I had no idea about disability coupled with cancer. what I read was about a woman’s fear of losing a breast, of losing her hair, of losing her life. There have been times when I took exception to the word survivor. It was funny since I had thought of a litany of terms such as cancer, polio and mitral valve fighter; an illness soldier; a winner of suffering, among others. However, my internalizations would not allow me to play the victim. I stood up for myself and

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explained that being disabled with multiple issues is a part of who I am. But, of course, it was not easy. There was a part of my life, which wanted to belittle every bravery award given to me. I am sure everyone wants to fight, but there comes a time where you say, ‘hey come on, give me a break’. I know my family, my friend, my students were encouraging me to ‘fight’ harder but I had no rebelliousness left in me. on being told to read Lance Armstrong’s or Audrey Lorde’s9 story of conquering the disease my guilt was highlighted. For me, the success stories at that juncture was not true as I had no strength to cope with the cumulative pains of polio, heart surgeries and cancer. what was worse, but in retrospect the flip, was that very often the lumpectomy and loss of hair tell us something about the way our society responds to femininity. Despite having to deal with society’s notions of what constitutes beauty and recognizing it, I realized I too responded to femininity in the same way. even as I was sedated under heavy anaesthetics, and my scarred breast would soon be under the knife, I did not muster the courage to say yes to mastectomy. It would become yet another impairment. It is intriguing that the idiom of conquest celebrates the living and indirectly reprimands those who ‘didn’t fight hard enough’, as if surviving an illness such as cancer is completely a matter of personal responsibility and effort. what was even more hurtful was the necessity to camouflage the personal blame and responsibility for my illness as I realized I could have taken regular tests. when the nurse called my name, I was suddenly reminded of prisoners marching to their deaths somehow find one defiant gesture to mock the situation. I opened my eyes in the ICU to a dull, throbbing ache which I try to ignore. I found myself trying to disguise the physical evidence of my treatment by wearing scarves but not the wigs. As nancy Mairs, a fellow disabled recounts, ‘not long ago a friend called me intrepid. But I’m only as brave as I have to be, I reminded her. And I don’t want to have to be this brave’ (1996: 48). Personal stories, therefore, do more than share one person’s story; they sow a seed. Triumph over cancer as a formidable foe creates the same problems for women with breast cancer as it does for other people with disabilities. Thus, there is a close similarity of cancer and polio as both illnesses are exemplified as the decisive enemy, which assaults the body, where the body becomes the combat zone split from the mind that must become a disembodied combatant.

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The imagery of being a soldier is identical for both polio and cancer. one could ask questions, but the ultimate authority was vested in doctors and nurses. As is the history of disability, we should not assume that every woman’s voice has been heard. Just as the stigma of disability silenced disabled women and men, today’s prescription of the ‘healthy’ language of cancer can be just as silencing, leaving many people without authenticated means of communicating their experience. Similarly, my friends and family, in fact the entire support system, have few alternatives but to take on board the confrontation metaphor. There is no other language. notwithstanding the losses associated with disability and cancer, the boundaries between impairment and disability are blurred because a disabled person’s identity and experiences form a complex narrative. My acceptance of my life situation as a disabled person has been what Arthur Frank (1995) calls a ‘quest narrative’ in which the introduction of disability was accepted and used to derive personal meaning. As the explains, ‘the genesis of the quest is some occasion requiring the person to be more than she has been, and the purpose is becoming one who has risen to the occasion’ (1995: 128). My first chemo treatment was on 16 September 2005 and exactly 13 days later on my hair started to fall out. A part of my will power and mental strength went with every strand. My brother left my room and I’m not sure who cried the hardest — he or I. At one point, in a feeble attempt to stay in control, I began to tell them that I was sorry that my illnesses had ruined our lives but it never entered my mind how terrified they must have been of losing me. My treatments ended in March 2006. Though I would continue to see my doctors every three months, it felt as though an umbilical cord had been cut. My hair began to grow back signalling the beginning of my rebirth. Slowly the fatigue lifted, and I knew staying active and alive with cancer and disability were the challenges. reflecting back on the last few years, I could sincerely talk about with assurance that I have so much to be thankful for this year and every year hereafter. There can be joy and sadness in beginning again — an excitement that comes from making every single minute count. notwithstanding the feminist issues, cancer became a life-changing opportunity. Polio was a gift — an opportunity from which to learn, experience, understand, and then move on. what is really significant is to bring the

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experiences forward to others. Illness can be symbolic of the experience of a failed relationship but not forgetting the lessons. It was up to me to determine what I wished to do with that opportunity. The particular worldview through which one interprets and copes with these life events also shapes the ways in which survivors come to make meaning of the challenges people face and the accomplishments they achieve. one’s worldview is at once a lens, a filter and a barometer that helps an individual and their family to make sense of a life-altering illness. research on disability issues has paid astonishingly little regard to the autobiographical narrative, especially of disabled people. Since disability has been a generic term, it has not included other issues, which in my case was heart-related disease and cancer. The reason for engaging with the memories of self and others is critical to understanding disability as cultural discourses 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 autobiography serves as a self-reflexive tool that helps to highlight personal experience. As a disability rights scholar, I turn to this methodological tool 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. I have found this to be true in my own case as well as in others. 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. Constituted as being profoundly the ‘other’, disability in all cultures symbolically represents a sense of lack, tragic loss, dependency, and abnormality. I often think of how Jean Paul Sartre (1956) had described how the look of the other can make one feel objectified, evaluated, embarrassed, or ashamed of whom

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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’. Thus, one way or another, my self-conscious appraisal of my ‘Self’ becomes activated through the gaze of the other which evaluates me. 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 I appear to the other’ (ibid.: 189). whether conscious or not, the ‘Self’ acquires a different identity. Thus, identification of disability losses is never meaningless. As I write this, I feel that I should have been given a reward for so many illnesses. wow! what a list it has been? Aren’t I brave? Am I not an agentive woman? In the midst of this pain, did I ever lose hope to live? I howled and wailed, but did I stop thinking of my unfulfilled dream of initiating the Disability Studies Programme in the University of Delhi? Brian watermeyer says, the very real danger for disabled people is that this sphere of our human experience, of our sense of self, may be rendered less admissible or possibly banished entirely from view under the host of moral imperatives exercised by a medicalising society — to overcome, normalise, disguise, defeat, disown, defy or otherwise void the perceived emotional trappings of disablement (2009: 98).

Yet, my disabled self was very intact, though marked by scars in many ways. The tears indeed are always cathartic. They liberated and permitted me to transcend the negation of the ones who hated the fact that I was vulnerable and weak. My disabled body, therefore, continues to resist oppression and continues to fight for the rights of the disabled. The realization that my internal oppression in such a cultural milieu, in which I grew up, used to a pattern of seeing my disability as a personal quest and tragedy to be borne no longer exists. A colleague asked me whether I believe in miracles. when I responded in affirmative, she was taken aback and said, ‘ask for a miracle to cure yourself from polio’. Strangely, it never really occurred to me. I had no memory of an able-bodied self. I also treasure the valuable experience that I can carry through life. I can’t imagine what would my life have been if I didn‘t have polio and the other illnesses. I think it is telling that my first questions were: will I be able to drive? will a man love me and take care of me? what kind of fun and excitement will I experience? would intimacy be real?

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I did not ask such questions because they were not available to me. The cultural script for relationships in which one person is physically disabled and the other is not is one of despair and pity; it may not have been the life that I’ve had the opportunity to live. I’m quite content with my the life. If one does not empathize with a disabled subject and my personhood, one will not be in a position to understand the intimate core of my disabled self. As Joseph Campbell says, people say that what we’re all seeking is a meaning for life. I don’t think that’s what we’re really seeking. I think that what we’re seeking is an experience of being alive, so that our life experiences on the purely physical plane will have resonances without own innermost being and reality, so that we actually feel the rapture of being alive (1988: 5).

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notes 1. Available at http://www.newmobility.com/articleView.cfm?id=734& srch=Spina (accessed on 17 May 2011). 2. It is evident that families can be ambivalent, loving as well as oppressive. Disabilities are not only problems for the disabled person but for the family too. It is the family which provides the care. notwithstanding the stress experienced by familial structures, women, however, are affected the most. In the Indian patriarchal culture it is not uncommon for the male members to give extra responsibilities to women to take care of the disabled person. 3. Arya Samaj, founded by Maharshi Dayanand Saraswati, is an institution based on the Vedas for the welfare of universe. It propagates universal doctrines of humanity. It is neither a religion nor a sect. 4. Before sunrise, the process of digging small pits was initiated. Then, the children, some just a year old, were lowered into the pit and buried neck-deep. nearly 60 children were so buried. They were kept there for six hours and taken out after 10 am. The children were seen crying as they couldn’t move their limbs. 5. Shri Mehandipur Balaji Temple is situated in Dausa, rajasthan, devoted to Lord Hanuman’s Temple. Long ago, the image of Lord Balaji and that of Pret raja (the king of Spirits) appeared from the Arawali hills. 6. For readers who do not know the story, Siddhartha Gautama was born into a royal family. The prediction was that the young boy would become a great teacher of wisdom; that he would teach the world the way to escape pain and suffering. His father, Suddhodhana, was more concerned about his son’s political quest rather than his spiritual qualities.

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worried by this forecast and the anxiety that his son would eschew his worldly duties, led Suddodhana to create a world of beauty for his son, so that sickness, death and old age were banished from Siddhartha’s consciousness. The prince grew up within the palace walls, having no contact with the outside world. He learnt his royal duties and engaged in the pastimes of princes. He married a beautiful princess named Yashodhara and they had a son. The little boy was named rahula. They all lived happily together within the walls of this created world. However, Siddhartha’s quest for knowledge led him one day outside the city gates. His father made arrangements such that no imperfections would come in the way, but Prince Siddhartha happened to catch sight of a funeral procession; he chanced upon a beggar in the streets; and, finally, he saw an old woman doubled over in pain. raising questions and realizing the illusory nature of his existence, Siddhartha’s world crumbled. He abandoned his material and royal world and retreated to the forests and struggled to find the meaning and truth of existential realities. 7. I use the ‘other’ to refer to a process in which an individual or society attempts to convey a label, such as disabled, Dalit or woman. As Bill Hughes and kevin Paterson say, ‘the response to impairment in modernity has been essentially anthropoemic: disabled people have been cast in the role of other and cast out: imprisoned by what Foucault (1967) called the “great confinement” and excluded from an denied access to many of the key sites of power and privilege’ (1997: 325). I deal with the process of nothing with the help of Memmi’s work in Chapter eight. 8. Medical encounters are not simple as the domination of and by medical professionals are not easy to bear. I discuss these issues in Chapter Six. 9. reading Audre Lorde was indeed a revelation. Breast cancer for her was a personal and political understanding of the self.

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two

Conversations about Disability: The Cultural Landscape There is no history of thought outside the history of systems of thought. There is no speech outside systems of languages. There is no spirituality outside received spiritual frameworks. There is no disability, no disabled, outside precise social and cultural constructions; there is no attitude toward disability outside a series of societal references and constructions (Stiker 2000: 14). Man [sic] often becomes what he believes himself [herself] to be. If I keep on saying to myself that I cannot do a certain thing, it is possible that I may end by really becoming incapable of doing it. on the contrary, if I have the belief that I can do it, I shall surely acquire the capacity to do it even if I may not have it at the beginning (Mahatma Gandhi).

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n well-meaning terms, Gandhi is giving a thesis of overcoming for disability. Perhaps, this is reflective of the cultural realities in India that disability was paradoxical as it was clearly visible and yet invisible. The fact is that disability as a human characteristic has no respect in terms of time, space, geographical location, social or economic status, as well as gender and age. The 2011 census indicates that the 2001 census has revealed that over 21 million people in India as suffering from one or the other kind of disability. This is equivalent to 2.1 per cent of the population. Among the total disabled in the country, 12.6 million are males and 9.3 million are females, although the number of disabled is more in rural and urban areas. Such proportion has been reported between 57–58 per cent for males and 42–43 per cent females. The disability rate (number of disabled per 100,000 population) for the country as whole works out to 2,130. This is 2,369 in the case of males and 1,874 in the case of females. Among the five types of disabilities on which data has been collected, disability in seeing (48.5 per cent) emerges as the top category. others in sequence are: disability in movement (27.9 per cent), mental disability (10.3 per cent), disability in speech (7.5 per cent), and disability in hearing (5.8 per cent). The disabled by

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sex follow a similar pattern except for that the proportion of disabled females is higher in the category of seeing and hearing. Across the country, the highest number of disabled has been reported from the state of Uttar Pradesh (3.6 million). Significant numbers of disabled have also been reported from states like Bihar (1.9 million), west Bengal (1.8 million), Tamil nadu, and Maharashtra (1.6 million). Tamil nadu is the only state, which has a higher number of disabled females than males. Among the other states, Arunachal Pradesh has the highest proportion of disabled males (66.6 per cent) and lowest proportion of female disabled. My submission is that quantitative data is a product of conjecture because interpretation of disability is culture-sensitive. whether any human being marks herself/himself as disabled is interpreted in terms of attitudes and beliefs towards disabled persons in a given cultural understanding. Thus, disability is deeply embedded in the sacred texts, mythology, cinema, scriptures folklore (stories and songs), proverbs, poems, and riddles. Through sacred texts and the theory of karma, this chapter locates disability in pre-dominant Hindu culture. To situate a relation between culture and the disabled person is to look at how the person appropriates culture through his or her participation in cultural activities and practices. The disabled person is understood as the members of community direct a labelled person more experienced others (e.g.: parents, teachers, peers) in a given culture. To go further it is critical to understand culture.

cultuRe And disAbility 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 symbolicus, a meaning-maker (Bruner, 1990). As an academician, my inclination is to understand concepts in the historical and contemporary contexts. The concept of culture is a central feature of several social science disciplines. Though the

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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 is ascertained from the given environment. According to Sodowsky et al. (1991) in every culture there is a ‘set of people who have common and shared values; customs, habits, and rituals; systems of labelling, explanations, and evaluations; social rules of behaviour; perceptions regarding human nature, natural phenomena, interpersonal relationships, time, and activity; symbols, art, and artefacts; and historical developments’ (cited in Sodowsky et al., 1995: 132). nieto defined culture as consisting ‘of the values, traditions, social and political relationships and worldview created, shared, and transformed by a group of people bound together by a common history, geographic location, language, social class, religion, or other shared identity’ (2004: 146). The culture is always energetic, as people change the perception of an individual is contingent on the way s/he reinterprets the world. Culture according to me is the assemblage of people generally acknowledged by their shared history, values and patterns of behaviour. However, cultures are constantly developing in response to changes in the environment, as Venkatesh (1995: 30) notes, ‘no culture stands still. Cultures interact and interface in the everyday world with history, politics and power. Culture is not inert — it is constantly changing and responding to shifting environments and circumstances. In fact, in India, as I assume elsewhere, each culture has many sub-cultures, which means that not all beliefs, values, attitudes, and behaviours are shared amongst all people of one cultural group. According to Charlton (2000), it is critical to recognize the socio economic and political influences as such developments are important interstices where culture happens, is expressed and, most importantly, is experienced: The point is not that one culture makes people do or think this and another that but that ideas are informed by and in cultures and cultures

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are partial expressions of a world in which the dualities of domination/ subordination, superiority/inferiority and normality/abnormality are relentlessly reinforced and legitimized (ibid.: 220).

Thus, disability, like caste, race , ethnicity, and culture, is a term whose definitions are culturally derived, even though its meaning throughout the world has been given what Harry calls ‘transcendent status’ (1992: 113). My proposition is that though invisible, disability through the voice of my fellow disabled and my own experiences will bear witness to a multiplicity of values and beliefs in a culture which is diverse. what is critical is that an academic engagement with the cultural nuances that construct the body as ‘disabled’ can be comprehended. The fact that cultural forces played a significant role in defining social attitudes to disability is not restricted to India alone. Questions such as why some individuals are disabled, how they are to be treated, what roles, rights and responsibilities will they be given or denied have been a part of a universal discourse (Hutchinson, 2006; Ingstad, 2001; Ingstad and whyte, 1995; Priestley, 2001) I have attempted to share the disability scholars’ understanding in the west before I share the cultural reality in India. To quote Meekosha, ‘The normal mind cannot en-compass a difference so profoundly embedded in its/our sense of the “normal” and it’s silenced others (those who are not the part of the takenfor-granted everyday world of the dominant cultures)’ (1998: 161). Understanding disability in culture has been a difficult endeavour for there is no linear way of understanding disability. As Borsay states, ‘no historical source is an objective account of past reality; all were constructed with a purpose in mind that renders them subjective’ (2005: 41). Similarly, Beresford says, ‘The greater the distance between direct experience and its interpretation, then the more likely resulting knowledge is to be inaccurate, unreliable and distorted’ (2003: 4). In a reading of Christianity by oliver who recounts the abhorrent nature of charitable practices, asserting they have ‘kept us [disabled people] oppressed and excluded for more than 150 years’ (cited in Hutchinson, 2006). Barnes (1997) and Pfeiffer (2002) also indicate that the philosophical heritage of western society, instilled with derogatory religious perceptions, has gone against impairment. A comparative analysis of Hindu, Buddhist and Islamic historical contexts undertaken by Miles (1995) suggests that on a peripheral level,

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responses to impairment are similar to Christianity. For instance, the Hindu and Buddhist concepts of bad karma and reincarnation, which promote the belief that disability is caused by an individual’s past transgressions, are seen to correspond with Christian doctrines of sin. Some religions believe that suffering is inevitable, and part of living; others believe that it is related to evil of the person or from outside, or can be cured through behaviour changes of the person or from outside. Similarly, Mitchell and Snyder (2006), Garland (2002) and Stiker (2000) have dealt with historical research on disability and have emphasized the need for unearthing the connections between cultural representations of disabled people in non-western world. In 1995, McDermott and Varenne’s piece on ‘Culture as Disability’ appeared in an issue of the Anthropology and Education Quarterly which indicated that disability, as a social construct, could be seen as evidence of both a culture’s weaknesses and a symbol of a culture’s power to disable. The understanding of disability has a close parallel with the works of erving Goffman on the issue of ‘Stigma’ (1963), H. G. wells’ short story ‘The Country of the Blind’ (1979) and nora ellen Groce’s Everyone Here Spoke Sign Language: Hereditary Deafness on Martha’s Vineyard (1985). what is evident from these texts is that cultural realities are polyphonous and multivocalic (Bakhtin 1940). Thus, similar and contradictory voices are brought to life. Culture is not so much a product of sharing as a product of people trouncing each other into shape with the well-structured tools already available. we do accept the fact that culture is not static but typically exhibit a degree of fluctuation. As williams indicates, ‘A culture has two aspects: the known meanings and directions, which its members are trained to; the new observations and meanings, which are offered and tested. These are the ordinary processes of human societies and human minds, and we see through them the nature of a culture: that it is always both traditional and creative’ (1989: 4). In India, it is even more difficult as the reality of India is multicultural, thereby sanctioning the idea of difference and heterogeneity lawful. In my own understanding, the conceptualization of diverse communities distinguishes between the majority community and the minorities. Thus, multicultural realities are valued and what is clear is that the state is usually identified with the majority culture, while communities that differ from it are designated as minorities. In emphasizing the irreconcilable differences between majority and

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minority cultures, multiculturalism locates incommensurable differences within the boundaries of the state. Further, as diverse communities coexist, multiculturalism raises the issue of their equality. It interrogates whether multiple constituencies are granted an equal status within the citizenship debates. notwithstanding the issues of majority versus minority and issues of equality, disability has often been marginalized in the cultural discourse. In fact as a constituency society has failed to acknowledge the social identity and significance of disabled lives. In a capitalist and globalizing society any a-productive citizenry illness takes the individual out of the everyday role and casts them in a suspicious light Thus to be sick is to be unproductive and a liability. whether it is any specific disability or illness the psychosocial discourse recasts the person with disability/illness as a productive citizen, doing their best to be well and not be a drain on society. From my vantage point, scholars like as Dalal (2000a, 2000b, 2002), Anima Sen (1988), Miles (2000), kalyanpur (1996), and Ghai (1999, 2003, 2009) have addressed the issues of disability in India. In congruence with the societal narrative of expectation coupled with the predominant negative attitudes toward disabled people in Indian cultural reality, that disabled people as well as families with disabled children/adults are wary of acknowledging disability. when anthropologists instinctively celebrate the coherence of culture, they imply that all the people in the culture are the same, as if stereotyping is a worthy practice. within the Indian cultural context, ideals of individualism, egalitarianism and freedom of choice have not been the themes (Beteille, 1963) as belief systems spring from the basic premise that the community is a hierarchically higher unit than the individual (kuppuswamy, 1977). However, my submission is that such an understanding of disability needs to be problematized. For many, disability represents a personal devastation that should be avoided at all costs, associated with shame and the need to either deny or hide the disability. To understand how a culture deals with disability it is important to raise questions such as what are the connotations attached to disability in our culture or what are the most significant issues of discussions of disability in society and how is the status of disability ascertained in culture. It is true that disability cannot be treated as a homogenous category as there is too much heterogeneity in the condition. Cities in India, as across the world, ‘see’ disability in different forms.

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All cosmopolitan areas have both physically and mentally disabled people, including people with leprosy, amputations, visual impairments, mobility impairments, hearing impairment, people who are intellectually impaired/disabled, head injuries, people with asthma, diabetes, heart disease and arthritis, people with AIDS, psychiatric illness, cerebral palsy, and so much more. There is also a clear hierarchy/continuum in the types of disability. In the following sections I attempt to illustrate meanings attached to bodies (especially in India) that are considered disabled and their interactions with culture, religion, social, and popular media. while one end of the cultural narrative points to disability as a punishment, in some instances, disability is positively defined as a gift, a challenge given to special people.

notion of Karma and disability The karma theory is a significant part of the cultural discourse for Hindus. Deeply embedded in the understanding of disability is the notion of dukkha or suffering or unhappiness. Suffering is primarily generated through karma, the law of ethical/moral compensation that governs samsara or existence. The word karma means ‘deed’ or ‘act’ and broadly refers to the universal principle of the cause and effect, and action and reaction, that governs all life. According to the doctrine of karma, for every morally determinate thought, word or action, there will be corresponding karmic compensation, if not in this life, then in some future life. Gananath obeyesekere explains karma’s relationship to rebirth with his theory of ‘ethicization’, a term he uses to conceptualize the processes whereby a morally right or wrong action becomes a religiously right or wrong action that in turn affects a person’s destiny after death. ethicization deals with a thoroughgoing religious evaluation of morality that entails delayed punishments and rewards quite unlike the immediate or this-worldly compensations meted out by deities or ancestors (2002: 75).

obeyesekere (2003: 75) regards ‘orthodox’ karma as a system of unalterable consequences of individual actions that supersedes the intervention of magic and of other beings, such as deities. The notion that ‘you sow as you reap’ and ‘what goes around comes around’ is also found in the west. Thus, karma creates an awareness of the

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relationship between cause and effect and that every action (physical or mental) has its own consequence, which must be faced either in this life or future lives. In Indian religious traditions, the doctrine of karma is linked with the doctrines and processes of reincarnation and transmigration. Transmigration is to reap the consequence of a previous karma that an individual self (jı¯va) takes her/his next birth, but, in the very process of acting out this consequence, the jı¯va creates further chains of actions thus setting in motion an endless cycle of ‘birth–action–death–rebirth’. This has been described as the ‘karmic wheel’ of alternating birth and death with fresh karma keeping the wheel in endless motion until the chain is broken through the annihilation of karma, and the jı¯va attains moksha (liberation or release from transmigration). Different traditions within the Indian religious system recommend different means to break the karmic cycle ranging from austerities, renunciation and non-action, to ritualism, philosophic knowledge, devotion, and fruitful action. Traditionally, there are three ways of understanding of karma, based on the knowledge that action is a changing process. Sanchita karma, is the collected karma from all of your past lifetimes. The second is called Agami karma, the karma you have created in your current life. The third is called Kriyamana karma, the karma you create and work off immediately, popularly known as ‘instant karma’ (Misra 1999: 372). In the Bhagavad-Gita, action is defined by a combination of five factors — karta (agent), karma (action), adhisthana (body), karana (instruments), and daivam (cited in Bhawuk 2008, Ch. 18.14). This combination can be understood in a gestalt manner, not as an isolated entity. Though karma is understood simplistically (in a linear manner) as action and consequence, it is much more complex. karma is an inescapable destiny; even after the passing of hundred crore kALPA (one day of Brahma which consists of 4,320,000,000 years of the mortals), one does not escape from his karma. Further, just as the seed evolves when the conditions are favourable, the good and evil karma propagate or cause birth of a jı¯va in different conditions as the result of which a jı¯va gets caste, life span and experience pleasures or pains. As Dalal and Misra comment, It is reflected in the principle of karma held by a vast majority of the Indians that refers to the sequence of actions constituting cause and effect. Thus, actions necessarily entail certain consequences. This scheme also

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empowers the actor to shape the future course of events by engaging in a responsible action’ (2010: 137).

A general understanding is that no one leads a life of unadulterated earthly bliss. The inevitability of suffering in any human rebirth results from the fact that the teachings are impossible to comply with as there is no way that one cannot be a sinner, at some point of time. Consequently, human life has to be appreciated and experienced. Thus, the beggar, the ‘cripple’, the blind destitute, and the sick are all personifications of suffering, symbolic representations of those who have sinned, reaping their karma.

Disability and Karma within India, it is generally believed that disability is retribution for past sins. It is critical that a particular action is not binding to some particular, pre-determined future experience or reaction. Disability as retribution has created a stoic acceptance of disabled person’s fate (Dalal and Pandey, 1999; Ghai, 2003), that is, the consequences of past deeds have to be borne. Though there are other interpretations, Dalal’s understanding is that the recurring narrative of retribution for ‘past karmas’ (actions) is unworthy of remedial treatment, especially with reference to disability. The attribution of disability is understood as God’s will, without any comprehension of external factors, such as poverty, poor health facilities and violence/accidents, as responsible for causing disability. As Dalal reminds us, there is a belief in divine punishment in all religions and people tend to accept the condition of disablement as something they deserve. This punishment is presumed to be meted out for their sinful acts, and one can overcome the resultant suffering by engaging in morally right behaviour (2002: 17).

Bhatt had pointed out, whatever be his [her] former conceptions or philosophical ideologies, a disabled person is bound to wonder why the cruel hand of destiny has struck him [her] alone, and not so many others around him [her]. He starts thinking aloud not so much about the question: ‘why did it happen?’ But ‘why should it have happened?’ To find an answer to question, he [she] digs into the past in quest of the missing link between his [her] present affliction and some remote sins in the former life (1963: 275).

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It is significant that Bhatt’s understanding was connected to moral considerations rather than a disability rights perspective. Further, she argues India, being one of the countries not directly involved in world wars, lagged behind the countries directly involved, in reaping the harvest of constructive endeavour in the field of rehabilitation. while progressive nations of the world have made great strides in this field, ours is, perhaps, one of those underdeveloped countries, for which rehabilitation has, for a long time, been a ‘forbidden fruit’ (1963: 324).

other researchers and my interaction with disabled people reaffirm the understanding that retribution for past sin continues to be a central belief in popular culture. The internalizations are deep as disabled people are viewed as being cursed, as well as carriers of curse on those they are dependent. For instance, Addlakha sees disability as bad karma: Indeed the law of karma decreed that being disabled was the just retribution for past misdeeds. Pity, segregation, discrimination and stigmatization became normalized in the management of persons with disabilities. Such constructions of the disabled by the non-disabled have the dual effect of not only justifying the complete marginalization and disempowerment of a whole population group but also leading tithe internalization of such negative stereotypes by disabled persons themselves (2007: 4).

More recently, Addlakha, reinforces the notion of apathy in India: Historically in India as elsewhere in the world, there has been a deeprooted cultural antipathy to persons with disabilities. Throughout the ages the disabled have been looked down upon with disdain, almost as if they were sub-human. They have been portrayed as medical anomalies, helpless victims and a lifelong burden on family and society (2011: 9).

Similarly, sociologist nilika Mehrotra argues: ‘The various factors responsible for disability in an individual form a mutual cause and effect relationship with fate’ (2006: 409). The causes of the disability can be viewed either exclusively or in combination with each other, but the supervening belief in fate holds good in all the cases. Beliefs about the cosmic intervention of the malevolent and the benevolent vis-à-vis possession by spirits play a significant role in the conceptualization of disability. People seek treatments for a

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disability according to its symptom, causation and severity; they also visit ritual and magical practitioners. The general understanding is that disability is a retribution for past sins. There can be a rationalization in which that God inflicts suffering on good people to test their resilience and inner strength. In either case, one is expected to respect whatever one can do effectively.

Karma and Agency I believe, metaphorically, karma is like the flow of a river. Many scholars, such as radhakrishnan (1953), believe that karma is not so much a belief of retribution as it is of continuity. Since it implies ongoing action, it can therefore be associated with agency. Through lack or failure, belief in karma predisposes us to take an empathetic attitude and develop admiration before what one considers as misfortune. If we look at the other person’s bad luck and be grateful for what we have, we would not grudge our problems. Destiny does not seem to be an absolute but something that subtly alters every moment. In my understanding karma is not fate; I believe that humans have the agency to create their own fates. A deterministic framework by definition can exemplify both the power/oppression of the past and its exertions on the future. Living with disability has taught me that karma is not inconsistent with freedom, though with some constraints. radhakrishnan reminds us that though no individual can be free from the determinism, one can overpower the past (to some extent) and evolve a way out. Since karma is an ever-evolving process, with each thought, breath and action, any person can choose to act (or not) to promote future possibilities. For instance, radhakrishnan asserts, ‘Man[sic] is not a detached spectator of a progress immanent in human history, but an active agent remoulding the world nearer to his[her] ideals’ (1937: 41). According to him, ‘our demand for freedom must reckon with a universe that is marked by order and regularity’ (1932: 242). He uses the metaphor of bridge (the card game) to understand life. Though the cards are a given , and in one senses traced to past karma, one has the freedom to make any call one thinks fit and lead any suit. Constraints are present in the form of rules but till the very end there is always a choice: A good player will see possibilities which a bad one does not. The more skilled a player the more alternatives does he perceive. A good hand may

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be cut to pieces by unskilful play and the bad play need not be attributed to the frowns of fortune. even though we may not like the way in which the cards are shuffled, we like the game and we want to play (ibid.: 279).

Misfortune is not fate but providence. In other religions, such as Buddhism, a disabled person receives the karma of past life. Strictly, disability is seen as a result of the mistakes committed in a past life. when using the Buddhist perspective, L. M. Bejoian (2006) points out that, while causality — cause and effect — certainly is the basis for karmic understanding, all one’s past lives contribute to and create one’s current life. Thus, the commonly held belief about disability that there is an obvious and linear causality is extremely insufficient and inadequate.

notwithstanding the positive or the negative affirmations of disability, the parents of the disabled child are more concerned about the stigma that society imposes on the family. Johri (1999), in a context of sex selection, believes that, traditional notions such as kismet (fate) also suggest an attitude of acceptance and fights against practices such as amniocentesis. kismet or fate is not always of resignation as seen in the lives of the women in Johri’s research who resisted the abortions of their female foetuses (cited in Ghai, 2001).

The fact that karmic space is action-oriented is reinforced by anthropologists. Vinay Shrivastava, in the context of mental illness, points out: Suffering is inevitable. It is in this way that one can neutralize the effects of bad karma. This ideology built upon the will of god and karma generates paradoxically two views: first, one may be indifferent to a person suffering from illness (mental illness included) because his suffering is a pronouncement of divine justice, therefore inevitable. The other attitude this ideology generates is of compassion. If one casts aspersions at mentally ill patients, one accumulates bad deeds, for which one shall have to undergo divine malediction in the next birth. Therefore, one should sympathize with the ill and their families and pray that they may be cured (2002: 157).

what is critical is that, despite the odds, there is kinship within the family that sustains the subsistence of a disabled person. As a

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father and philosopher, Gottlieb says, ‘Supporting the disabled and their caretakers in a loving and equitable way may well be the just and virtuous thing to do, but in our present society it seems a very distant goal’ (2002: 232).

Notion of Agency/Resistance In India, most parents tend to resist disability by responding to multiple ways of cure. For instance, many parents tend to rely on magic, sorcery, tantra, evil spirits, and witchcraft, offering prayers at temples (such as Balaji shrines or Vaishno Devi) or to saints (such as Sai Baba) and healers. Dalal points out, Large and extended Indian families provided essential physical, emotional and economic support to its members with disabilities. Being cohesive and stable social units, families provided an identity and a sense of security to its members, irrespective of their physical disabilities. The economic and caste status of the family and its networks, also determined the quality of the well-being of its members with disabilities (2002: 21).

My understanding is that once the parents have accepted the defeat and consequent resignation from cure, they initiate a sense of agency by taking interpretive charge. According to Bhatt, ‘a foreign writer has stated that in ancient India the physically deformed children were cast into the Ganges’ (1963: 92).1 Miles (2002) has commented that the historian Strabo had stated that the custom in the Punjab region was a public examination of babies after two months, to decide whether they were well-shaped and worthy to live (Jones, 1930: 53). However, I could not trace the details. There were also other reports such as Diodorus (XVII.91.4 ± 6) and Quintus Curtius (IX.i.24 ± 25) who reported that those with defects were destroyed. Historically, Chuckerbutty ([1864] cited in Miles) described the ‘revolting spectacle’ of infants with convulsions, believed to be possessed, exposed to die in Bengal. However, in my own research I have not found any such evidences. what is evident, though, is that disabled children have been abandoned. It is not surprising that in India’s patriarchal society women grow up with the conviction that each region has had its own established, traditional way of killing infant girls, methods that include drowning the baby in a bucket of milk, or feeding her salt, or burying her alive in an earthen pot. Thus, disabled children and female foetuses were both unwanted.

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Culture has a deep impact on disabled children and their families. For instance, Ved Mehta, a visually-impaired gifted writer, looked at blindness as akin to begging. Says Mehta, Blindness was a fate reserved for beggars, certainly not something that the child of a well-to-do family would suffer. She [mother] persuaded herself that I could see some. To prove it, she would approach my bed from one side and hand me a glass of milk; then, while I was drinking the milk, she would stealthily tiptoe to the other side, watching me carefully. I would invariably follow her with my eyes, my head perfectly synchronized with her movements, like the needle of a compass, and hand her the empty glass (2009: 319).

Though he rejected the disability, the mother’s experiences indicated that she could not accept his blindness. I think this is one of the conscious and unconscious wish of mothers who have had to live with the normative hegemony and the blame ascribed to them. The need of the mothers for a ‘normal child’ has to be understood in a cultural milieu, which produces a strong sense of shame in the mothers. Mehta says, She [mother] consulted an elderly Muslim seer who lived just inside the Shahalmi Gate. ‘Allah made your son blind because he urinated on the holy grave of Ahmed, in Gujrat,’ the seer said. Go, daughter, and donate to charity two gold eyeballs as close to the size of the child’s eyeballs as may be. The mother’s love acted as a possible remedy spending lot of money to get the two eyeballs. what is this intriguing is that this offering is given to a disabled (half blind and leprous) beggar (ibid.: 323).

Firdaus kanga was born in 1960 in Bombay. kanga publicly rejected Hindu notions of karma (laying responsibility for suffering at what humans may have done in their last birth) often foisted on disabled people. Born with ‘osteogenesis imperfecta’, a disease that led to a tiny stature and life in a wheelchair, kanga had to deal not only with the physical effects of his disease, but also with his image as a fragile, dependent boy. Firdaus’s mother loved him without reservation from the moment of his birth, while his father could never really come to terms with his son’s ‘deformity’. kanga’s anguish is reflected in the following quote in which he could understand his mother’s ambivalence in the form of exhaustion: I broke my leg again on the journey back to Bombay. when we went back home with my leg in a cast, Sera [my mother] wasn’t surprised. The holidays are over, I suppose’, she said. Imagine needing a holiday

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from your own child wishing you didn’t feel like that, because you love him, and you don’t need holidays from someone you love. So the question slides up into your mind: when I said that bit about really loving my son, did I mean it? That was a question Sera fought all her life. And whenever she wasn’t too sure of the answer, I could sense it like the crows outside my window could sense a monsoon shower. If there is one thing worse than doubting if you love your kid, it’s being the kid in question (kanga, 1990: 63).

In my understanding, the mother’s ambivalence is exacerbated and prolonged as dealing with children with disabilities is painful. A society guided by normative hegemony places higher demands on mothers even as it traumatizes and dismantles the support system on which they rely. A child with brittle bones, who would never grow taller than four feet, discovered his way into the world of sexuality and adulthood. kanga was one of the was first few public figures in India, to stand up for the rights of the disabled and gay people.

soRceReRy, WitchcRAft, MAGic, And cuRe of disAbility Throughout the world, cultures have shared ideas of what makes people ill and not ill. These beliefs help people discern the world around them. Health professionals and people with chronic illness have assumptions about their society’s health belief systems as well as the individual knowledge achieved through personal experiences. Healing beliefs, therefore, are embedded in the worldview, that is, the problems and rationale of the problems of both professionals and lay people. Such an understanding is known as individual models of the belief, referred to as ‘explanatory model’ (kleinman, 1980). These models provide a framework within which individuals sort through and make sense of illnesses, injuries and disabilities. The models are an integral part of all cultures, which affect the health status of people. The medical system includes the totality of health knowledge, beliefs, skills and practices of the every group. every culture has developed a system of medicine, which stand an enduring and shared relationship to the existing worldview. The medical behaviour of individuals and groups is understandable discretely from common cultural history. As Bhasin writes: Studies on disability — vision, hearing, speech impairment, mental and physical health problems — have argued that though these impairments

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are universal, the experience of being disabled is largely shaped by the health and social beliefs of the culture in which one lives. In fact, there are several views in regard to disability across the world. They all have explanations for disability, and how individuals with disability are treated and are assigned appropriate roles and responsibilities. These explanations point to the fact that the people with disability have a different status. Many societies have cultural interpretation for disability. Divine displeasure, witchcraft or evil spirits, reincarnation and biology are all given as reasons. The feeling and status of being disabled is shaped by issues of class, gender, family structure, economics, education and regional/national development (2007: 7).

Thus, throughout the world there are beliefs that malevolent spirits, the evil eye (nazar lagna), sorcery/sorcerers (jadu-tona karne vale), and witchcraft are associated with the causes of sickness, that is, through supernatural agents and forces. Sorcery, for instance, is the belief in magical spells that utilize occult forces or evil spirits to produce unnatural effects in the world. kanga talks about his association with the miracle man known as ‘wagh Baba’, because his father wanted a cure: There is no record of any miracle being reformed by wagh Baba, although every devotee claimed he had heard of many cures. The strange aspect of city’s flirtation with wagh Baba was that it affected people from every class and community . . . which only proves that need for the magic touches us all, rich or poor, ignorant or educated 2008 [1990]: 24–25).

Srivastava for instance, indicates, ‘In these societies it is not only mental illness but also physical illness, which is understood as being caused by supernatural factors’ (2007: 152). It is clear that throughout India there is no clear difference between physical and mental illness. Thus, even within urban India, which incorporates the highlyeducated, upper classes — often mental illness (and other problems) are attributed to supernatural causes. The fallout of this understanding is the fact that there is a popularity of supernatural healers. Such healers included tantrik, Sufi, gunia, ojha, siyana, bhopa, jankar, both in rural as well as urban India. My understanding is that while physical illness is associated with medicalization, the treat of mental illness has many connotations. The cultural context in India understands both mental and physical illness in medical as well as supernatural terms. while the causation

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of diseases might be rational, the desire to seek the possibility of supernatural powers for cure is not denied (Berry and Dalal, 1996; Ghai, 2003). A detailed analysis of specific temples and other pilgrimages is not possible, but the understanding that Sudhir kakar offers is that unlike the notion of the Self in the west where the mind and body are held to be separate, in Indian thought they are adjoined. Thus, ‘the subtle body is more than the psyche and in fact becomes the locus of identity of body and mind, the subject of both physiological and psychological predicates’ (kakar, 1982: 240)). Thus, various examples are taken from the point of religious–mystical cults in India where the healing concern of religious leaders could be in the form of sadhus, swamis, matas, babas, maharajs, and bhagwans. Such an understanding is strikingly more apparent here than in contemporary western societies. According to kakar, ‘it is the unquestioned devotion in the miraculous powers of the healer, which is at the core of positive outcomes’ (cited in Dalal, 2011). He says it is the unquestioned devotion in the miraculous powers of the healer, which is at the core of positive outcomes. kakar visited a number of shrines and healers and observed what transpires in the healing sessions. The suffering person often does not understand the rituals in which the healer engages but the ambience created transports her/him into an altered state. It is believed that the deity in this temple has divine powers to cure a person possessed with evil spirit. kakar mentions that one of the distinguishing characteristics of Indian healing is the role of the sacred: ‘The whole weight of the community’s religion, myths and history enters sacred therapy as the therapist proceeds to mobilize strong psychic energies inside and outside the patient’ (ibid.: 5). The revered may be invoked in many forms, but what is decisive is that different healing practices use different forms of the sacred but, for most of them, the physical and theoretical worlds overlap. Deities, demons and spirits are as much part of this human world as they are of the incorporeal. Folk healing, therefore, attempts to shield harmony between these two worlds. The traditional healers often know intuitively about the close interdependent relationship between the mind and the body. A sick and stressed mind sets the conditions for physical ailments to inflict the person; conversely, changing the mental state can treat an ailing body. Since the healer is a part of the community life, changing the social and psychological environment of a person who has excruciating hurt would be well thought out and connected to

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the healing process. As Dalal says, ‘the healer creates conditions in which physiological processes are connected with altered meaning and patterns of relationships, so that one’s social world is linked recursively to one’s inner experiences’ (2011: 24). I am sceptical about such forms of cure as my own experience has taught me not to trust such healing practices. However, I am not ignoring the fact that in a society like India’s, folk healing will be really helpful if we manage to establish a connection between folk traditions and methodical medical systems. I have mentioned earlier in Chapter one that I was taken to the Balaji temple as a child. It is believed that those who take part in exorcism rituals here are said to undergo radical physical and mental change, an ontological transformation that enables sufferers to overcome ill health and disease. This can be a possible method to cure ‘disability’, but we do not have in-depth, empirical research, which can support such processes. In the city of Hyderabad (Andhra Pradesh), the Dargah Syed Meeran Hussaini Quadri Bogdad was believed to heal mental illness and people congregate there for cures. Like the erwadi dargah in Tamil nadu, the belief here is that mentally ill patients need to be constrained by chains and shackles for healing. Patients developed scars from the shackles on their ankles, skin lesions and had lost a significant amount of weight. The only treatment was taking them to the mosque twice a day until one day they were cured. In erwadi, 28 mentally ill persons died in a fire accident in August 2001 because they could not escape as they were in shackles. As S. wadhwa puts it: Chained to a tree for two years, Asainar [a patient] has little hope of escaping his madness. or the insanity that surrounds him at the erwadi dargah in Tamil nadu . . . where hundreds of mentally ill like Asainar are left to rave, rant and rot. Some are shackled for days, others for decades (wadhwa, 2001: 52).

The misinformation and lack of education about mental illness plays a large role. once again evil spirits were the causes (a cultural construct) of mental and physical illness. Caretakers at the dargah took serious objection when photographs were being taken. They argued that people suffering from severe mental illnesses were coming to the dargah from faraway places for cures. As Srivastava says, ‘Chaining heralds the beginning of dehumanization of the sick, in fact, the beginning of his “animalization”. That is why the mentally ill are subjected to a beastly treatment’ (2002: 160).

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disAbility in scRiptuRes (VedAs) A reading of the scriptures does provide some indications about the understanding of disability. As discussed earlier, disability is primarily understood in Hindu culture as associated with disease, which emphasizes the importance on healing. Quotations from the scriptures are to be used to understand disability not as an often overlooked and contested ‘site’ in history but as pointers in understanding the cultural construct. Since language is used to understand disability, the context of the stories matters. Using deconstructive tools can be useful so that disabilities are understood not as a punishment for sin. I look at some of the sources that give some indication of disability.

The Rig Veda The earliest source of understanding disability is the rig Veda.2 It is considered the oldest and most important of the Vedas, composed between 1500 and 900 bce. It contains 10 chapters or Mandals, 1028 Suktas or Vedic Sanskrit hymns and 10,600 verses in total. There is a huge controversy among scholars concerning the time of composition of rig Veda. The German ideologist, Friendrich Max Muller places the timeframe between 1200 and 1000 bce whereas Lokmanya Tilak (The Orion, or Researches into the Antiquity of the Vedas [1893]) fixes it around 6000 bce and Jacobi in 4500 bce. However, it is generally believed that rig Veda was composed about 1500 bce in the Punjab region and codified in about 600 bce. It contains invocations addressed to various gods who are believed to possess powers of nature. Dalal and Misra point out, ‘Indian sages and thinkers were struck by the immensity of the universe and the empirically inexhaustible mystery of life’ (2010: 123). This wonder of existence is portrayed in the hymns of the Vedas, which attribute divinity to the striking aspects of nature (radhakrishnan 1953) and the human mind (Sri Aurobindo 2006[1939]). The Vedic texts believed that the universe had evolved out of one. This first principle of the ‘one’ (tad ekam) is considered without any definitive character. It is without qualities or attributes, neither positive nor negative. Any attempt to describe it is to delimit and bind that which is limitless and infinite. All gods and deities are of late or secondary origin (Nasadiya Sukta, 10: 129). My reading of the scriptures has attempted to highlight those parts that refer to ‘healing’ methodologies for curing

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disabilities. Many of the quotations underscore disabilities as they are embedded in the text. For instance, the term deaf is synonymous with not listening to knowledge. Similarly disability denoting ‘blindness and lameness considered as misfortunes’, are not distinguishable from other illnesses. Thus, divine intervention is seen as helping the unfortunate blind or lame person. In my understanding people with physical and sensory impairments as well as leprosy, are discussed in the context of healing by the Ashvins, the semi-divine medical twins. The rig Vedic hymns directed to the Ashvins describe them as those who can make the blind and lame see and walk, and the injured recover quickly from their illnesses.3 The rig Veda mentions the story of a warrior, Queen Vishpla, who lost her leg in battle and was fitted with an iron prosthesis.4 She returns to battle and emerges victorious (Bk 1, H.116, 15). The idea of an artificial limb or aid was clearly present, but this does not prove that non-mythological examples existed. There is some evidence of Mediterranean prostheses back to the 5th century bce (Duraiswami and Tuli, 1971: 269). Possibly, the ‘miraculous’ part of the intervention was not that a prosthesis was supplied, but the speed with which mobility was said to be restored, or the use of iron rather than wood. The hymns (17–19) thus highlight impairments in the form of being blind; being crippled and so on5. For instance, He whom for furnishing a hundred wethers to the she-wolf, his wicked father blinded, — To him, r.jra¯ s´va, gave ye eyes, o As´vins; light to the blind ye sent for perfect vision. 18 To bring the blind man joy thus cried the she-wolf: o As´vins, o ye Mighty ones, o Heroes, For me r.jra¯ s´va, like a youthful lover, hath. cut piecemeal one and a hundred wethers. 19 Great and weal-giving is your aid, o As´vins, ye, objects of all thought, made whole the cripple. Purandhi also for this cause invoked you, and ye, o mighty, came to her with succours. 20 Ye, wonder-workers, filled with milk for S´ayu the milkless cow, emaciated, barren; And by your powers the child of Purumitra ye brought to Vimada to be his consort.

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The myths about Dirghatamas’ parentage varied widely; he was described as son of kâsi-râja (according to the Mahabharata), of Uchâthya (in the rig Veda) and of Utathya by Mamatâ (in the Purânas). There is mention of a blind sage Dirghatamas the blind sage who composed 25 Vedic hymns, (Bk 1, H.140 to H.164). It seems that the sage was discarded by his wife and sons and thrown in the river Ganga. king Bali saved Dirghatamas and decided to raise the sons of the sage and, hence, adopted them. kalinga’s name is associated with the five royal lines of Anga, Vanga, kalinga, Pundra, and Suhman named after the five adopted sons of king Bali, the Asura. It is interesting that the notion of abandoning the disabled as an idea is present in the myths as well as the Vedic hymns.6 The Ashvins also had healed a female seer, Ghosa, of a skin disease that had long rendered her unmarriageable, and went on to provide the son she and her husband could not produce on their own, owing to the advanced age and impotence of the latter. They even rescued ship-wrecked sailors. with compassion surprising in ancient warrior literature, the rig Veda deals with handicap sympathetically. For example, blindness does not seem to disqualify a woman from marriage but is a reason both for the family to deal the situation with special forbearance (Burton Stein, 1998: 48). The implication is that blindness and lameness were well-known tribulations, not identical with illness, requiring supernatural intervention for any cure. Perhaps, this was the guideline for the society as cure was considered critical, whether from a lost limb or difficult circumstances in marriage. The Ashvins symbolize both the power of nature and the forces that exist in the physical body, thereby helping an individual in his/her spiritual progress to overcome certain impairments. Thus, a medicalized notion contextualized in the Supreme is evident, which can be problematic. I do understand that to delve deeply into the multiple interpretations is significant but I have only attempted to look briefly at those sections that deal with disability. Disability has always been understood in a metaphorical context. In fact, my interest in this writing grew as I noticed how frequently scholars whom I genuinely admire either ignore disability or else use disability in an indifferent or uninterested manner. I’d like to believe that scholars engage with disability in an insightful, analytical, reflective, and creative way. For instance, ramanujan in Speaking of Siva suggests that within the Bhakti movement, disability happens

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to assist devotion: ‘Cripple me, father, that I may not go here and there. / Blind me, father, that I may not look at this and that. / Deafen me, father, that I may not hear anything else’ (1973: 70). Thus, the desire is that immobility, blindness and deafness can create the inertia required for deep reflection. However, the inertia in a person who could be immobile in actuality is an existential concern. I often have to read texts that have words such as blinding, blindness, crippling, and deafness to critique the seeming absences and oversights in knowledge creation. whether disability is connected to devotion or knowledge; the need is to problematize such knowledge. Babbitt argues that it is often not a ‘matter of being ignored or even misunderstood’ that is the basic issue (2001: 303). rather it is a concern of ‘being understood all too well in a way that disallows recognition that there is still something that needs to be understood’. My plea is that disability should not be understood in a ‘without hesitation’ way as disability is cognitive and a movement towards experiences and knowledge are different and do not follow an orthodox location. For me, the personhood of a disabled person, irrespective of religion and knowledge, needs to be cross-examined. In many temples in odisha and elsewhere, disabled children are given food and considered as God’s children, which might seem inspiring, but the subtle meanings need to be addressed. However, a generic understanding of disabled people will be difficult as every person’s beliefs will be different. My contention is that whether traditional or contemporary, disability is a part of being human. By evaluating the disabled as recipients of blessings or punishments, any society will inevitably escalate the sense of alienation and differences between the abled and the disabled.7

the upAnishAds It is very difficult for a non-historian to trace the evolution of Upanishads but I have followed the commentaries of many eminent scholars who felt that that people were still searching for the meaning of life. The Upanishads stimulate reflection and enquiry on the existential questions about life and the universe. After deep contemplation, these seekers also called rishis came up with powerful insights about the deepest issues concerning life and the universe.

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This collection of knowledge and wisdom formed the end sections of the four Vedas and, therefore, is known as Vedanta. The Upanishads are the compilation of such sublime knowledge and wisdom. The literal meaning of Upanishad is ‘sitting near the guru (to obtain knowledge of the adhyatma (the truth about the self)’: Into the blind darkness they enter, People who worship ignorance; And to still blinder darkness, People who delight in learning. ‘Joyless’ are these regions called, In blind darkness they are cloaked; Into them after death they go, men who are not learned or wise (Bkhad. Upan., 4.4.10–11).

A layman’s interpretation would be ‘into blinding darkness (ignorance) enter those who worship ignorance (rites). Into greater darkness enter those who are devoted to knowledge (the ceremonial portion of Vedas because they disregard the teachings of the Upanishads and consider ritualistic part of the Vedas as most important)’. It is critical to understand the metaphor. notwithstanding its esoteric interpretation, the body understands, whether blindness or crippling will be missing. In the kaushøtaki Upanishad (3.2-3), this essential living principle is identified as Prajnyåtman, which means the self that is of the nature of consciousness. All faculties of mind, such as seeing, hearing, tasting, smelling, touching as well as body movement, speech, are enlivened by the same cognizing principle, that is, pure consciousness that is of the nature of truth (satyam), knowledge (gyanam) and the infinite (anantam). That alone is the reality within which the entire manifestation of universe exists.But then, in truth, life in itself is consciousness, the (real) self, which holds this body all around and causes it to rise (be alive). Therefore, it is said that one should heed this ‘alone-ness’ as the source (uktha). essentially that which is the breath of life is consciousness. And that which is consciousness is the breath of life. This explanation was used to simplify knowledge and make it available to every person regardless of attributes. As I mentioned earlier, my concern is of slippage between realities such as blind, cripple, deaf, and ignorance or the understanding that that to be limp is to be powerless, to move forward to knowledge (gyanam).

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In the Vedas, the examples of illness and disease, the correspondences position the source of disability subjugation as the impairment itself. radhakrishnan highlights this aspect of the Upanishads to look at the world not as an objective entity, but to perceive the universe by turning to the individual. An interesting story in the katha Upanishad is that of a teacher (Yama, god of Death) and a student (a young nachiketa in his teens). Vajashrava, nachiketa’s father, once decided to acquire fruits of the sacrificial ritual Viswajit Yajna in which the performer had to give away all his precious possessions. Cows were designated as valuable and special possessions in those very ancient days, and hence Vajashrava decided to donate all his cows to Brahmins. However, nachiketa notices with surprise that his father was giving away only old and disabled cows, ‘who had given their milk for the last time and who were not capable of bearing calves’. (My interpretation is that disability is not considered precious.) nachiketa has an argument with his father because he wants to remind Vajashrava that giving is a sacrificial gesture and should not have attachments. Initially, Vajashrava tries to evade the ‘childish’ question but nachiketa is insistent. The father gets irritated and decides to give nachiketa away to Death. nachiketa decides to visit the land of Death: he waits outside Yama’s palace for a few days, without food, for the god who is away at work. Yama returns from his journey, is told about this unlikely visitor, and grants him a reception. He is upset to keep a Brahmin waiting without welcoming him without food and water. In order to compensate for his wait, Yama gave him three boons. nachiketa declares: My first wish is, when I return home may my father welcome me lovingly. My second wish is to grant me the knowledge by which I can be worthy of living in the heavens. My third and last wish is to grant me Atmagnam — knowledge of the atman (soul).

Yama grants the first two boons immediately and tries to convince nachiketa to give up his third wish. He offers gold, pearls, coins, horses, elephants — even the happiness of Swarga (heaven) instead. ‘no, I do not wish for anything else’, replies nachiketa firmly. Finally, Yama grants him the third boon too and nachiketa is enlightened with the knowledge of the atman. Though the story is not related to disability per se, what emerges is the importance of ‘wholeness’

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even in the idea of charity. Through nachiketa one learns about attachment and detachment.

Garbha Upanishad The forerunner of modern genetics is reflected in Garbha Upanishad in which foetal development is described.8 Though there are many sources, I have followed A. G. krishna warier and ram Amaya Tarkaratna in the Bibliotheca Indica, with commentaries by nârâyanabhatta. what is interesting is that disability can be a consequence of the parents’ mental state. A translation by Subhash kak points out, ‘If [at the time of impregnation] the parents are agitated, the child will be blind, crippled, hunch-backed or stunted’ (see http://inversesquared.blogspot.in/2011/02/primitive-science-ofvedas-garbha.html [accessed 6 March 2014]).

puRAnAs: constRuctinG disAbilities thRouGh nARRAtiVes of stoRies The Puranas are a genre of important Hindu (or Jain and Buddhist) religious texts, notably consisting of narratives of the history of the universe from creation to destruction, genealogies of kings, heroes, sages, and demi-gods, and descriptions of Hindu life. The Puranas also use stories to comprehend the realities of life and reflect how the attitudes towards disability are deeply embedded in the cultural order. The meaning of dichotomy between normal and disabled is conveyed through cultural symbols. A very interesting story is that of Jadabharata, which appears in the second section of the Vishnu Purana. As a child, Jadabharata had apparently made up his mind that in this life he would not speak at all. Instead, his thoughts would be focused only on God, and so he meditated upon Him. His family constructed the child to be dumb in two ways — physically mute and intellectually impaired. The implication of disability was clear: after his father’s death, the brothers divided their inheritance between them leaving Jadabharata out. He was only used to perform chores. They would give him the most unpalatable food, but still he did not mind; he remained completely absorbed in his own consciousness. one day, king rahugana (ruler of the states known as Sindhu and Sauvira) forced Jadabharata to carry his palanquin and chastised him because he did not carry it properly. Four men usually carry

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a palanquin but there were only three men: one of the bearers had fallen ill. when they saw Jadabharata, strong and silent under the tree, they thought he would make an excellent substitute. The king then stuck out his head and commanded him to be the fourth bearer. However, Jadabharata who was full of mercy for every living creature and could not bear to step on a worm or ant or beetle, was jumping and hopping now and then, jerking and swaying the palanquin. The king got irritated with the bearer and commanded him not to be clumsy. His new servant looked the king in the face, smiled, and spoke for the first time in his life, and asked ‘whom are you calling “clumsy”? Is there anything in the whole world that is not you? everything is the Self. How can the Self ever be tired or need rest?’ The conversations between the king and Jadabharata resulted in a wise king ruling and later giving up his throne to become a wandering monk. In one sense, the story is reflective of the negativity associated with disability. The cultural realm remains a central locus for the operation of power, constantly reworking and re-ordering hierarchies, authenticating some understandings and reprimanding others. The themes of the stories pertain to many issues such as the truth about the universe, about man and about God. Similarly, the Garuda Purana is in the form of a dialogue between Lord Vishnu and Garuda, the king of Birds. The second section of this Purana (given here) deals with issues connected with death, particularly funeral rites and the metaphysics of reincarnation. Hindus use portions of the Garuda Purana as funeral liturgy. Chapter IV and V are very informative narrative as it highlights an account of the kinds of sins which lead to Hell. Garuda is very inquisitive in knowing the different sins and those which result in Hell — it is a so specially guarded, no joy can enter, and is a region of pain, sharp, intense and severe. A clear picture of both chapters indicates that many of the following stanzas are crucial in understanding disability: Any person who, through pride, insults his teacher, becomes an epileptic; who despises the Vedas and the Shastras certainly becomes jaundiced. who bears false witness becomes dumb; who breaks the meal-row 1 becomes one-eyed; who interferes with marriage becomes lipless; who steals a book-is born blind.

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who strikes a cow or a Brahman with his foot is born lame and deformed; who speaks lies becomes stammered, and who listens to them becomes deaf. A poisoner becomes insane; an incendiary becomes bald; who sells flesh becomes unlucky; who eats fed of other beings becomes diseased (The Signs of Sins, 39).

It is very intriguing to know food habits are prescriptive of the character. For instance, a person who eats flesh becomes very red and the one with discoloured teeth is understood to consume intoxicants; the Brahmin who, on account of greed, eats what should not be eaten, becomes big-bellied. Similarly, one who eats sweet foods, without giving to others, becomes swollen-necked and one who gives impure food at a Shraddha ceremony is born a spotted leper.

disAbility in the sMRiti: the MAnusMRiti The word Smriti denotes the remembrance of the meaning of Vedic texts by the saints. The Smritis include Manu, Atri, Vishnu, Harita, Yajnavalkya, Angira, Yama, Apastamba, Samvarta, kaytyayan, Vrishapati, Prasara, Vyasa, Sankha, Likhita, Daksha, Gautama, Satatapa, and Vahinsistha. I use the Manusmriti as an exemplar of social, domestic and religious duties and have attempted to give an understanding of disability is as it is understood in the Hindu book of law.The Manu Smriti was one of the first Sanskrit texts studied by the British and translated into english by Sir william Jones, published in 1794. The British administrators encouraged their interest in the Dharmashastras, which they believed to be legal codes. In fact, these were not codes of law but norms related to social obligations and ritual requirements for the Aryan. It is considered the oldest and one of the most important texts of this genre. Some of these codes of conduct pertain to the caste system and discuss the stages of life for ‘twice-born’ males (the ashrama system). For this chapter, I follow the translation by wendy Doniger and Brian k. Smith (1991) and Buehler (1886), which is available online. My reading indicates that disability as a term is not present in the Manusmriti. other terms denoting do occur: idiot, dumb, blind, deaf, and cripple. Disabilities were considered as a calamity, god-given, dependent on fate, associated with karma and the notion of sin in the Laws of Manu (XI: 53). For instance: A stealer of (cooked) food,

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dyspepsia; a stealer of the words (of the Veda), dumbness; a stealer of clothes, white leprosy; a horse-stealer, lameness. The stealer of a lamp will become blind; he who extinguishes it will become oneeyed; injury (to sentient beings) is punished by general sickliness; an adulterer (will have) swellings (in his limbs) (Buehler, 1886: 440). The Laws of Manu lay a clear duty on the head of the family to maintain disabled relatives (ibid.: 372–73). The Padmapurana lists many disabilities and dishonourable states that a man may suffer, yet exhorts his wife to revere him as her god, lavishing all care on him (Dubois, 1906: 344). Feminists continue to search in vain for any record of the reverse; nonetheless, Manu (IX: 79) conceded that a husband’s insanity or impotence were fair grounds for a wife to become disenchanted with him. Thus, if disabilities are considered as retribution for particular sins, then the individual is entirely responsible for it. However, Manu advocates that a blind man, an idiot, (a cripple) who moves with the help of a board, an old man (nearly 70 years old), and one who confers benefits on Srotriyas, shall not be compelled by any (king) to pay tax (Law no. 395). Let the king always treat kindly a Srotriya, a sick or distressed man, an infant and an aged or indigent man, a man of high birth, and an honourable man (Arya). At the time of consultation let him cause to be removed idiots, the dumb, the blind, and the deaf, animals, very aged men, women, barbarians, the sick, and those deficient in limbs (ibid.: 150). (Such) despicable (persons), likewise animals, and particularly women betray secret council; for that reason he must be careful with respect to them. Manu also says, ‘An epileptic man, who suffers from scrofulous swellings of the glands, one afflicted with white leprosy, an informer, a madman, a blind man, and he who cavils at the Veda must (all) be avoided’ (ibid.: 161). Manu continues, ‘A blind man by his presence causes to the giver (of the feast) the loss of the reward for ninety (guests), a one-eyed man for sixty, one who suffers from white leprosy for a hundred, and one punished by a (terrible) disease for a thousand’ (ibid.: 178). The giver (of a Sraddha) loses the reward, due for such a non-sacrificial gift, for as many Brahmanas as a (guest) who sacrifices for Sudras9 may touch (during the meal) with his limb. However, some rules show certain consideration that is shown to the afflicted by way of protection and care. while laying down the duties of the king, Manu says: The king should always give gifts and do other kinds of charities to a learned Brahmin, to one who is affected by disease or affliction, to one

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who is young (an orphan) to him who is very old and also to him who is born in a noble family . . . Let him not insult those who have redundant limbs or are deficient in limbs, nor those destitute of knowledge, nor very aged men, nor those who have no beauty or wealth, nor those who are of low birth (Buehler, 1886: 141).

Ironical as it is, the neglect of the disabled woman from the psyche of even liberal feminists, who consciously and zealously fight patriarchal oppressions, is such that while the Manusmriti has been read and re-read on a number of occasions, it is difficult to find any published work that has looked at it from the point of view of the disabled girl/woman. Law 72 in the text, states, ‘even if a man has accepted a girl in accordance with the rules, he may reject her if she is despised, ill, or corrupted, or if she was given with something concealed’. This is followed by Law 73 that says, ‘If anyone gives away a daughter with a flaw and does not mention it, that gift from the evil hearted daughter-giver may be annulled’ (Doniger and Smith, 1991: 205–6). Condescension for past misdeeds rather than for the present disability is also understood by Manu: ‘madmen and drunkards, adulterers and gamblers, impotent men and lepers, blind men and one-eyed men, present themselves for social intercourse again and again, and are rejected again and again’ (ibid.: 256). In a 50-year study of the Indo-Aryan languages, there was an abundance of variants on ‘defect’ themes, mentally, physically and morally (Turner, 1966: x). He observed that most of these words are apt as ‘expressive’ words, mostly as derogatory words to reflect deformation. The reason for this understanding is because of the connotations attached to disability in the scriptures. Though changes in the legalities are there, it is interesting to know that the Hindu property laws of Mitakshara and Dayabhagha indicated that disinheritance is associated with people who were lame, blind, insane, or afflicted with leprosy. Although the family had the discretion that those denied inheritance on the basis of disability are to be handled but the disabled remained excluded from the option of inherited wealth and security unless their ‘defect’ could be removed by medical intervention or through ritual practice. Besides economic disenfranchisement, a disabled member of the family was also seen as a risk to future prosperity and marriage for other family members. The understanding of disinheritance however is linked to karmic logic and social

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attitude that those who were infirm and disabled were less ritually pure. Manu (IX: 288) recommended that prisons be visible to the public, where the suffering and mutilated evildoers can be seen (Ibid.: 228). Penal blinding as a substitute for capital punishment, in medieval europe may have intended some deterrent effect. The idea of rehabilitating sinners has seldom made much headway in conditions of socio-economic stringency, where law breaking among the masses threatens the privileges of a rule-making class. However, in the application of Manu’s Laws, as in any sophisticated judicial system, extenuating circumstances were recognized. For example, you could be fined for defecating on the king’s highway; but commentators say it was excused if you had good reason, such as the sudden appearance of a tiger. eunuchs and outcasts, (persons) born blind or deaf, the insane, idiots and the dumb, as well as those deficient in any organ (of action or sensation), receive no share. Disability in the Buddhist understanding is not a barrier to spiritual attainment. Miles (2000) indicated that khujjuttara a hunchback imitated the stoop of a deformed holy person, earning a ‘corrective’ rebirth10. khujjuttara played a substantial comedy part in ‘kusa-Jataka’ taking ample advantage of her role as privileged nanny, even locking her royal mistress Pabhavati into a room and generally throwing her weight around. notwithstanding the disability, khujjuttara was considered as a wise person, as she composed 112 sutras in mixed prose and verse of Buddha’s sayings. The queen Samavati gave her daily eight pieces of money for the purchase of flowers. khujjuttara, bought flowers with four pieces from the gardener, having stolen four kahapanas daily. As a usual pattern she went to the garland-maker’s house to buy flowers, she heard the sermon delivered by the Buddha. She became a sotapatti.11 Since then she discontinued stealing and bought flowers for eight kahapanas. The queen questioned her how she had bought so many flowers for eight kahapanas. The maid-servant could no longer conceal anything, as by this time her faith in the Buddha had become very strong. She confessed her guilt and said that after hearing the Buddha’s sermon she had come to realize that stealing a thing is a sin. The queen asked her to repeat the Dhamma she had heard. khujjuttara did so in the presence of the queen and her 500 female attendants. The queen did not reproach her for her stealing four kahapanas daily, on the contrary, she praised her much for

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letting her hear the Buddha’s Dhamma. Since then the maid- servant was regarded as teacher by the queen who asked her to go to the Master daily to hear the Dhamma and repeat it to them. In course of time, she mastered the Tripitaka (Dh. Com., Vol. I: 208). when Samavati expressed a desire to see the Buddha, khujjuttara suggested that she should pierce holes in the walls of the palace and gaze on the Buddha as he passed along the street. khujjuttara’s hunched back became immaterial as her inherent wisdom is deemed remarkable. However, the compensation of the impairment is present in the ancient literature. Mitchell’s work on Special educational needs and Inclusive education: Systems and contexts by David r. Mitchell (2004) talks about khujjuttara as an educator. Bhattacharyya (1933) indicated that attempts were made to compile data on special education with the help of detailed questionnaires , among 23 Provincial or State Departments of education. efforts were made to publish in academic journals for creating awareness. A report by the Central Advisory Board of education (CABe) highlighted that data be gathered on children with disabilities that ‘wherever possible, handicapped children should not be segregated from normal children and that partially handicapped children should receive special treatment at ordinary schools’ (Chapter IX: 76–82). Similarly, Amir Chand published an article on the Down Syndrome in India in 1932. A six-year-old boy who was nicknamed ‘Chinaman’ long ago by his neighbours (p. 204), evidently having the sort of features that evoked the term ‘mongol’ as a label in 19th century Britain. Miles (2002) cites the law code of Brihaspati, possibly dating from between the 4th and 6th centuries. There were attempts to form village cooperatives or artisans’ guilds binding themselves to perform certain charitable activities, e.g. construction of a travellers’ rest-house and relief with a stipulation that the idiotic, the aged, the blind, to women or children, afflicted or diseased persons would be the recipients. Therefore, identification encourages the self-less giving over of part of one’s-self to another. However the major beneficiary of the help is the donor not the recipient, although the Dharmashastra called upon all householders to look after the weak and disabled, and those who did do so, were ensured a place in heaven. Such care was to be shown without expectation of any returns (kuppuswamy n.d.). Though charity has remained the predominant response to the predicament of disability, it is not without rational ramifications.

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For instance, this gets reflected in Miles (2002) listing of ‘undeserving’ recipients of charity. It not only includes ‘immoral persons’, but people with physical and mental disabilities, who are all assumed to have been immoral in an earlier existence.

discouRse of coMpAssion, duty And chARity There are glimpses in the historical discourse which indicate that there were people who understood the rulers as responsible for taking care of the vulnerable and weak. Bhatt discusses pity in context of the ‘handicapped’, Pity is also a widely prevalent attitude. It is felt when the seriousness of the problem in question is recognized but there is no understanding of the condition. Pity towards the physically handicapped implies that the person who feels pity ‘cognizes the sorry state of affairs, but it also implies that one who does pitying considers the object of pity less fortunate or less able than oneself (1963: 103–4).

Though she is ambivalent it is clear that the recipient would be constructed as inferior: ‘Pity is a somewhat positive attitude, but it is badly firstly, because it makes its object ‘feel inferior and secondly, because it does not result in any constructive effort to ameliorate the situation’ (ibid.: 104). In my understanding, pity is a relationship of power that exceeds the emotional response established between the vulnerable individual and the powerful resulting in and engendering an asymmetrical relationship. The idea of pity and its relationship to the disabled must be understood in an historical context. In two studies conducted in rural areas in northern India, Dalal et al. (2000) found that the prevailing disability attitudes of local communities and families of persons with disabilities were negative and patronizing. Fifty per cent of the families in the rural sector felt that their family members with disabilities could do nothing in terms of contributing to family income. These negative attitudes are considered major sources of social discrimination in terms of delayed treatment and rehabilitation, school dropouts and for giving low priorities to disability services. Conducting a survey using the same measures in southern India, Paterson (2000) found that the attitudes of Community Based rehabilation (CBr) workers towards people with disabilities were not affected by age, gender, marital status, CBr work experience, and contact with a person with a disability. Their attitudes were

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slightly more positive towards those with orthopaedic disabilities and negative towards people with a visual impairment. Bogdan makes a thought-provoking observation: People with physical and mental differences were considered as human curiosities. Pity as a mode of presentation was absent . . . Pity did not fit into this world. Using pity as a presentation mode for people with physical, mental and behavioural differences fits better the modern conception of human differences, that is, as pathological’ (1988: 277).

Pity has been the dominant mode of representing disability — the rise of the professional fund-raising, the growth of organized nGos and the poor disabled child to pursue the disability causes. The endearing, poor child in need of a cure and care from more capable and non-disabled others sends the message that if generous people contribute money, disability can go away. Thus, it seems that non-disabled tend to appease their conscience by being charitable, coupled with the opportunity to feel altruistic. For instance, in the 4th century bce, kautilya, had specific rules and laws regarding persons with disabilities, as mentioned in the Arthashastra. rangarajan indicates that the legal incapacities of disabled people were manifold: they could neither inherit property nor make a valid contract, nor act as legal witnesses. women employed in municipal brothels could decline to serve clients with physical defects; yet, on the positive side, prostitutes were discouraged from adding to disfigurement, such as ‘cutting off a client’s ear’ in the heat of the fray (1987: 354). There were penalties for defamation using the disability terminology (true, false or ironically euphemistic). For instance, kautilya instructed the king to ‘provide the orphans, the aged, the infirm, the afflicted and the helpless with maintenance’ (Boesche 2003: 16). kautilya also suggested assigning work on priority to women who were widowed, single, crippled, and abandoned. He understood the need for people to be self-reliant and economically independent. He also recommended allocating certain jobs exclusively, such as spinning, weaving and cutting of wool, cotton, hemp and flax, for the disadvantaged and vulnerable from a social and economic standpoint. Among abusive expressions relating to the body, habits, learning, occupation, or nationalities, calling a deformed man by his illness, would be punished with a fine of three panas. If the blind

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or the lame were insulted with such caustic expressions, such as a man of beautiful eyes, the fine would be 12 panes. Likewise, when a person is taunted for leprosy, lunacy, impotency, no matter whether true or false, the offender would be punished with fines ranging above 12 panas. Thus, a notion of ‘agency’ was visible, through historical research shows a paucity of efforts on disability. There are instances in which Petain (2011) cites a dialogue between narada and Yuddhisthira (in the Mahabharata). what is intriguing is that narada interrogates about the disabled (in my parlance) prince and says, ‘Do you treat as father, your subjects who are afflicted with blindness, dumbness, lameness, deformity, friendliness and those who have renounced the world?’. Primarily, the powerful people such as kings and I would extrapolate state as responsible for protecting and providing for the war-disabled and their dependents. once again narada puts a question to the eldest of the five Pandavas. ‘Do you maintain the women of those (war-disabled) who died for you or who have come to a sad plight.’ Thus, the responsibility for the family is that of the state. According to Murickan and kutty (1995, cited in nHrC 2007), emperor Ashoka had developed an elaborate public health system. His edicts record that the king constructed hospitals along all the highways and deputed physicians and made arrangements for medicines, food and drinking water. Gopas were instituted at the village level to maintain record of birth, death, caste and also to provide for the ill, infirm and those in need of help. To me it seems that the sensitivity for the charity discourse is influenced by the three qualities of sattva, rajas and tamas meaning Goodness, Passion and Darkness respectively. According to Miles (2002), very few shelters were present for leprosy and mental illness patients. According to reade (1858) and Miles, in 1826 the Hindu rajah kali Shankar Ghosal, opened an asylum for the blind and an inn for the disabled in Benares. This Asylum was followed closely by the Muslim nasiruddin Haider’s opening of the king’s Poorhouse for the ‘blind, maimed, leprous, infirm’ etc. at Lucknow in 1831 (Miles, 1995: 54). notwithstanding the creation of support system though occasional, ‘alms giving’ and charity are conceived as moral and social obligations to provide for less fortunate members of Community. establishing choultries and langarkhanas that provided regular

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meals and, at times, shelter for those without other means of support were present. The term langar khana seems to have evolved from the word ‘langer’. The meaning of Langar in Sikhism is commonly known as Guru’s Langar, which means langar of the Guru. The meaning of Langar in Persian is ‘an alms house’, thus a place for the poor and the destitute’. It is understood as ‘a public kitchen’ which is considered as regardless of any specifics such as gender ability/ disability etc. Though such systems of charitable support, much like contemporary charity models of disability care, however, ensured that the disabled remained a category of the population outside the mainstream structures of society. Alms given with a hope of return or with a small mind lose their sanctity; when we give under pressure with much difficulty also, the giving is degrading. It is interesting that external financial aid is difficult to understand. The discourse of charity is reflected in the times of today. However the comprehension that charity which is rooted in human compassion, selflessness and without any hope of return or reward is considered as the highest. However, as nilika Mehrotra pointsout, ‘with the colonization of India by the Bruisers, large-scale charity missionary activities started under official patronage. with their colonialist attitudes, they completely ignored indigenous culture and belief systems’ (2011: p. 66). The identification of the benefactors and beneficiaries did help in reaching out to the poor and destitute, but there was no substantial impact on the disability situation. John. M. Alexander and Jane Buckingham (2008) in a frontline article indicated that the disabled remained excluded from the option of inherited wealth and security unless their ‘defect’ could be removed by medical intervention or through ritual practice. Besides economic exclusion, a disabled girl specially was also seen as a risk to future prosperity and marriage for other family members. My concern is that girls are not only subjected to hunger and neglect and dying of malnutrition and/or starvation. If a girl falls sick, the family often will not take her to the hospital or buy her medicines. I discuss these issues in the section on gendering (Chapter Four) and prenatal selection in (Chapter Five).

coMpAssion Compassion or daya has been the most important virtues in our spiritual development. For instance the reign of Chandra Gupta Maurya

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is a shining example as it attempts to rehabilitate vocationally for the physically disabled as well as other socially and economically disadvantaged members. However what is also evident is that Indians, in general, have an ambivalent attitude towards people with disability. Moreover, providing food and shelter had more to do with obtaining spiritual favours for the giver than with improving the economic and social conditions of the disabled poor. The traditional Indian narrative is, therefore, interplay between the role of culture/religion and the state in promoting caring for the disabled. A patronizing attitude or seeing the issues in terms of ‘charity’ rather than entitlement seems to lie at the root of poor enforcement of the relevant laws. This in turn is linked to the overall neglect of citizens’ rights in governance. It is time the system corrected both its theory and practice relating to the rights and entitlements of the disabled. Philanthropic gestures are also reported by Miles (2002). He cites Manimekhalai’ where a Tamil social worker that would feed disabled beggar’s everyday.12 However, in my research, I found that Manimekhalai is a purely Buddhist work, which in addition to the narrative, contains also expositions of the Buddhist doctrine. However it is possible that the narrative uses the Manimekhalai, the protagonist as a worker who would look after the poor people. robert ernest Hume (2010) in his book The Thirteen Principal Upanishads mentions Janasruti, ‘a pious dispenser, a liberal giver, a preparer of much food. He had rest houses built everywhere with the thought, ‘everywhere people will be eating my food’. However there is no evidence of disabled people in Miles rendering of Janasruti in 2002. whilst the indication of support is evident, it is hard to miss the charitable orientation. In one sense, it is not the only disabled who are perceived as recipients of charity, historically, disabled people were never identified as a separate group, nor were they segregated on this count (Dalal, 2002). However, this lack of segregation, did not amount to mainstreaming. According to Prabhu (1963) destitute, widows, aged, diseased, and disabled people were often classified within one category. Clearly, the only common strand linking these otherwise disparate conditions being their difference from the dominant social construction of normality. There are also instances of protection provided by benevolent kings

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and nobles for the benefit of all those who had no other place to go, whether their problem was social, economic or physical. This kind of protection continued all through the medieval and colonial era. Bhatt (1963), Miles (2002) and Dalal (2002) indicate that within the context of religious orientation, the state’s involvement was evident. For instance within-Islam-the notion of zakat giving of alms — lead to community provisions for disabled people in the reign of Sultan Balban (1266–87). Miles mentions a pension arrangement whereby military men were allowed to receive land as an income in case they became old and infirm, and no longer functional. Ganguli’s (1970: 29) translation of Mahabharata cites the case of Draupadi, who daily served ‘the deformed and the dwarfs’, before taking food herself. There is also a mention of Yudhishthira who refers to, ‘the many hump-back and lame ones’ among the servants; and enquires after the welfare of those who are ‘defective in limb, those that are imbecile, the dwarfs to whom Dhritarashtra gives food and raiment from motives of humanity, those that are blind, and all those that are aged, as also to the many that have the use only of their hands being destitute of legs’. even in this inquiry, Yudhishthira is convinced that sins must have been committed in the former lives. ‘The issue of morality for the king use to extremely important Help however, is rendered as a lawfulness in the present. The Santi Parva is an important statement in the Mahabharata, in the genre known as ‘wisdom literature. My reading states that the Santi Parva of Mahabharata symbolizes theories of both social and political contract. My understanding is that there was a community agreement that issues such as being opinionated, being cruel in action, encroaching other’s property, and violation of woman’s chastity. In view of Yudhishthira’s dejection on having killed his close relatives, the Santi Parva is describes how from his bed of arrows Bhishma illustrated various systems of duties worth the study of kings desirous of knowledge; this Parva explicated the duties relative to emergencies, with full indications of time and reasons.13 By understanding these, a person attained to consummate knowledge. Issues of final emancipation of life has been shared. From the perspective of disability, negative rendering is quite clear. For instance, ‘when the king does not restrain vice, a confusion of castes follows, and sinful Rakshasas, and persons of neutral sex, and

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children destitute of limbs or possessed of thick tongues, and idiots, begin to take birth in even respectable families. Therefore, the king should take particular care to act righteously, for the benefit of his subjects. If a king acts heedlessly, a great evil becomes the consequence (Ganguli, 1970: 198). Another story from the epic Mahabharata is about an optimistic advisor to a king. In a hunting trip in jungle, the king wants to eat a fresh coconut for his breakfast. Searching for a coconut tree closely he took his sword to cut down a coconut. In the process, the sword slipped and cut down his toe. The advisor however did not sympathize resulting in king’s fury. The advisor told the king that cutting of the toe is a real blessing, as there has to be a reason for bad accident. However the king could not determine the reason and became very angry. As the king noticed a dry well nearby, and threw the advisor into that well. In his way to palace the king met headhunters, who were looking for a sacrifice and the king would be considered as an excellent sacrifice for their festival. The king was horrified with this decision. As he was taken to a tribal priest the priest was very particular to see that the item to be offered to the god has to be perfect in all respects. As the priest was inspecting the king’s body he noticed that his toe was missing so the body had a lack. Since god would not accept anyone who is not whole-bodied the king was sent away. It was then when king realized that advisor was correct and the validity of a reason. However, in my mind even the sacrifice was contingent on the hegemony of perfection. Thus, society assumes an idealism of perfection which will impose a sense of being fundamentally different from and, often, superior to disabled people. Disabled people without non-visible disabilities are seen as independent, self-controlled and autonomous, while people with visible disabilities, in contrast, are looked as lacking in independence, autonomy and personal responsibility. The fact that dominant mind-set of culture worships the perfect body, disability becomes a terrifying reality. Though in the west, we often speak of charitable acts as acts of generosity, however, in Hindu tradition, charitable acts are part of Dharm (religion) and in Islam as one of the duties of a pious Muslim. To Hindus acts of giving and charity, better known as Dana, are essential to ones religious duty. The significance is that Hindus are expected to give freely in order to ensure that they fulfil their Dharma.

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For Hindus, acts of charity and giving are viewed as responsibilities, not as acts of generosity. Such acts of giving and charity are to first start at home, but of course are not inclusive to home life. The responsibility at home is to ensure that one’s extended family is well taken care of and have everything that they need. It is believed that ‘the wealth a person acquires is not for him [or] herself but for the wealth of one’s extended family and others’, this also includes the welfare of the state. Samrita Trust gives the history of ‘Centre for Blind’ which was started in the 1908 by Ann Jane Askwith of the Church of Missionary Society, London, as residential school for the blind children, today it is a home to blind, deaf and other disabled men, women and children and is run by the Diocese.14 Instead of alms, a child begged for education. Pondering his need, Miss Askwith dreamed of a school for the blind children. She went home to study how to teach the blind, and in 1890 the first class for the blind children was opened. kane quotes Baudhayana’s rules for a special type of upanayana, the rite of initiation to educational studies, performed for youths who were `blind, deaf, crippled or idiots’ (1974: 297–98). According to kane, though they could not study the Vedas, performance of the rite conferred social status and enabled them to marry. In laws of Baudhayana was an ancient Indian mathematician who discovered Pythagoras theorem enjoined. ‘Granting food, clothing and shelter, they (kings) shall support those who are incapable of transacting legal business, viz., the blind, idiots, those immersed in vice, the incurably diseased, those who neglect their duties and occupations, and so on’. notwithstanding Manu’s strongly negative prescriptions, the initiation rite is noteworthy. However, Ambedkar15 notes that upanayana was unavailable to anyone ‘disabled’ by membership of the lowest caste, the Shudras (1946: 191). As he says, ‘The Hindu Civilisation . . . is a diabolical contrivance to suppress and enslave humanity. Its proper name would be infamy. what else can be said of a civilisation which has produced a mass of people . . . who are treated as an entity beyond human intercourse and whose mere touch is enough to cause pollution’. elliot and Dowson (1976) in a recording of history as given by Indian historians mention that Firoz Shah (1351–88) instituted a ‘wrongful disablement’ scheme to compensate people who had unreasonably been ‘deprived of a

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limb, nose, eye, hand, or foot’ under the stern rule of his predecessor Muhammad Shah. In the 1540s, it was reported that destitute people that included blind, the old, the weak in body, widows, the sick, were given stipends. The understanding by a social activist Baba Amte (Iqbal 2008) who believes ‘work Builds, Charity Destroys’ is important, but charity and disability seemed to be connected. Amte’s philosophy is in action. He would say, ‘Give them a Chance, not Charity.’ even though the implicit meaning of such possibilities have been there in the culture, and dignified negotiation of difference is possible. However, the quintessential discourse of charity and philanthropy is evident as many institutions regularly receive food, old clothes, and money from society at large, which makes these charitable gestures not out of a sense of commitment to the issue at stake such as flood appeals but as a response to a cultural expectation to do one’s dharmic (religious) duty toward the needy, in the same spirit as one would give alms to beggars. Though ambivalence about donating is there, what is significant is that that the undercurrent is of associating with the ‘pathetic’ or unfortunate, or piteous. Charity in itself was nuanced. The words of the Bhagavad-Gita are informative for modern world’s charity organizations and individuals who are interested in giving. For instance, ‘Charity given out of duty, without expectation of return, at the proper time and place, and to a worthy person is considered to be in the mode of goodness’ (17.20). Further, ‘But charity performed with the expectation of some return, or with a desire for future results or in a grudging mood, is said to be charity in the mode of passion’ (17.21). ‘And charity performed at an impure place, at an improper time, to unworthy persons, or without proper attention and respect is said to be in the mode of ignorance’ (17.22). However, now the religious consciousness has been corrupted and very frequently one comes across advertisements that ask for donations for constituencies such as children, disabled, elderly, donations for education, health, environment etc. — what is intriguing is that the choice is yours, depending on the constituency that is deemed as important. Almost every newspaper and online sites, regardless of language, a charity advert appears for donation. what is problematic is that charitable causes have subjected disabled people to paternalistic attitudes of pity and consequent handouts.

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Harlan Hahn (1986) testifies there is a close link between the attitude of paternalism, the subordination of disabled people and the ‘interests’ of ableism, Paternalism enables the dominant elements of a society to express profound and sincere sympathy for the members of a minority group while, at the same time, keeping them in a position of social and economic subordination. It has allowed the nondisabled to act as the protectors, guides, leaders, role models, and intermediates for disabled individuals who, like children, are often assumed to be helpless, dependent, asexual, economically unproductive, physically limited, emotional immature, and acceptable only when they are unobtrusive (ibid.: 130).

It is a stark reminder that the key role of state in providing the requisites for a disabled citizen. I take these issues in the third chapter. The following section now attempts to look at perfect, evil, heroic and deficit images from the lens of mythology in India.

illustRAtions of disAbility in MytholoGy An understanding of disability in India is through reference to the two great epics the Mahabharata and the ramayana. Along with their intrinsic appeal, the importance of these epics lies in the fact that in the last decade of Indian television, mythology has become an extremely popular and widely televised theme. As a result, the televised versions have gone beyond what could be termed as period dimensions of mythology, creating contemporary associations both in idiom and imagery. Thus, through a modern genre what is achieved is an invocation of nostalgia for traditional symbolism, which has the potential of entering human consciousness, constructing palpable images, according them contemporary legitimacy. This explains the continued resistance that is evident in challenging stereotypical images that construct disability today. while there are different strands in the historical rendering of the myths and the associations that they convey, it is apparent that the disabled are constructed as objects of pity and charity; other times they are shown to represent deviance, treachery, evilness, and villainy. Some images portray the disabled as capable of heroic efforts that result in overcoming the disability and set an exemplary standard for others to follow. In all these strands, disability is constructed as the opposite of normality. Such constructions, when televised on the national media have a

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subtle yet formidable impact on people’s attitudes towards those who are marginalized by both physical and mental disabilities. In this section, I pick up some themes from the two epics to highlight stories that, in my reading, portray disability. Though the stories are familiar to Indian readers, a wider audience would need to understand the story and the themes embedded in them.

Disability as a Deficit Myths by definition have an intrinsic appeal as their structure adheres to the qualities that make a good story. They begin with an exposition, proceed to rising action and a conflict, leading to a climax. The conclusion is never left open-ended, as there is a resolution of the conflict. Myths explain the elements of ancient cultures, by focusing on the tragedies and hardships that befall human lives and the world around them. Cultural suggestions often come as narratives, as stories, or, in Boesch’s terminology, myths. The myth is a . . . collectively accepted means of explanation, justification, and exhortation, which might be expressed in the form of myth-stories, but also my themes . . . Isolated themes relating to the underlying myth . . . a myth-story specifies . . . patterns of imaginary situations, while a theme corresponds to specific themes related to the myth or the myth story (1991: p. 124).

My attempt is to trace some of the themes in mythology, which clearly implicate disability. one of the dominant strands in mythology constructs disability as a lack and deficit. The roots go back to the Mahabharata in which Dhritarashtra, the older prince of the kuru dynasty is deprived of being crowned as the king, as is customary after the father’s death, because he is visually impaired. He is, thus, perceived as deficient and incompetent to become the ruler. Instead, his younger brother Pandu, who is a non-disabled person, is nominated as the king. The idea that loss of sight does not impact the entire functioning of the individual is overlooked and underplayed. The unfolding of the story reveals that when Pandu dies, Dhritarashtra is appointed as the ruler (as a regent) but only till Pandu’s sons are old enough to rule the kingdom. This is ironical as when there is absolutely no choice, Dhritarashtra’s impairment ceases to matter. Unable to fight this oppression, Dhritarashtra fuels his son Duryodhana’s aspirations to acquire what he consider rightfully ‘his’

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royal claim to kingship. while the conventional interpretation sees Duryodhana as the evil-hearted person responsible for perpetuating the final war, what gets overshadowed is the internalization and transfer, both at the conscious and unconscious level of the pain, hurt and anger experienced by a man who is stigmatized as blind. The realization that Dhritarashtra’s disability is considered as his personal tragedy fits in with the current understanding of disability in terms of the medical model. The only apparent note of empathy (if it can be called that) comes from the Dhritarashtra’s wife, Gandhari who blindfolds herself for life to experience life in its ‘incompleteness’ as her husband does. Such a stance is problematic to me — both as a feminist and a disability activist, as it deals with a very sensitive issue of ‘caring’. once again the notion that carers are sacrificial lambs is extremely disturbing to disabled people all over the world. Another connotation that stems from this instance is that a disabled person cannot partner one who is normal. As a woman, Gandhari cannot be given greater powers and capacity than her husband, hence she takes on the position of a co/fellow disabled. As has been reiterated worldwide, disabled people are not striving towards such empathy; rather, the fight is more to highlight the social oppression that causes their lives to be affected negatively. Be it education, employment or participation in the everyday activities of life, the implicit and the explicit message of deficiency cannot be overstated. Another nuance that is implicit in the epic Mahabharata is that of ‘mother blaming’, encountered very often by the mothers of disabled children.within India and in the more developed world too, it is not uncommon to find instances where mothers are blamed for and held responsible for the disability of the child. An insight into the reason for Dhritarashtra’s blindness will make this point clear. As the story reveals, the two sons of king Santanu (from his marriage to Satyavati) died without leaving heirs to the kingdom. In accordance with the custom of niyoga, upon the death of a childless man, it was the nearest male relative’s prerogative to impregnate and father the widow’s child. As per Indian tradition, the birth of a son is a must to attain nirvana/moksha. A helpless Satyavati initially appeals to her husband’s first-born ‘handsome’ son Bhishma to undertake this responsibility. However, Bhishma had vowed to remain celibate and not claim the throne at the insistence of his

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stepmother’s father. So, Satyavati calls her own firstborn, the ‘ugly’ sage Vyasa to perform this duty. Satyavati prepares her daughters-inlaw (Ambika and Ambalika) to expect their husband’s half brother to visit them at night. These women are unable to handle the wild appearance of Vyasa. In fright, Ambika closes her eyes, causing her son Dhritarashtra’s congenital blindness. Ambalika, turns pale and her son Pandu is, therefore, born pale. Satyavati again begs Vyasa to father of a third son, ‘who should be born without any defect’ (Verma and Saxena). Interestingly, Ambalika sends her maid, dressed in her finery. The maid, as a result, conceives the ‘normal’ Vidura, considered as the incarnation of Dharma (religion), that is, a wise and just person. while the myth is problematic at several levels, there is a clear indication of mother blaming here. The cause for the son’s blindness is his mother’s reaction. I wish to submit here that to a conservative and traditional mind, this incident becomes the precursor to the ‘mother blaming experience’ both for the sex and disability of the child. The narrative also implicitly constructs the perfect and handsome body of Bhishma as the desirable while the deviation occurs in the form of Vyasa’s undesirable appearance.

Disability as Evil In the Mahabharata, the internalized feelings of jealousy and hatred that Duryodhana (and his brothers), the sons of Dhritarashtra, experience towards their cousins, the sons of Pandu, are reinforced further by their maternal uncle Shakuni, who is a physically impaired person. The deviousness of the social constructions is apparent in the evil skills provided to Shakuni. The problematic aspect is that that there is no pathos in these characters especially in the televised versions, which render them as unilaterally evil. Shakuni, who is Gandhari’s brother, is representative of the matriarchal link; thus, disabling him also renders disabled the rights that stem from the matriarchal lineage. Further, notwithstanding his own disability, he is out to avenge the his sister’s apparent unfortunate marriage to a blind man. However, his disability does not deprive him of exceptional cheating skills at dice. within the field of psychology, the interpretation is more in terms of Adler’s notion of compensation for organ inferiority. However, the image does construct disability as inherently evil. what probably gets played is the old notion that an unsound body cannot have a

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sound mind. Throughout the narrative, the scheming Shakuni, who limps, is highlighted as the instigator of all the battles that are fought between the cousins. The fact the disability is associated with evil behaviour is reiterated by the other widely televised epic, the ramayana, in which the critical twist in the story comes in the form of Manthara, a woman with a hunchback. readers (the audience) are informed at the onset that Manthara is Queen kaikeyi’s mentally unsound maid who, according to the narrative, has been selected as the agent through which destiny is going to prevent Dasharatha, king of Ayodhya, husband to kaikeyi, from handing over his throne to his oldest son rama. kaikeyi, the second wife of king Dasharatha, though extremely fond of Manthara, says, Kane khore kubre kutil kuchali jaani, that is, one should treat the blind, lame, hunchback, and dwarf as evil and treacherous. Manthara, despite her initial introduction as being mentally unsound, does not manifest any slow thinking. She successfully influences kaikeyi against the king and rama. kaikeyi was at a loss to find ways to convince her husband that she wanted the kingdom for her son, Bharata. It is Manthara who reminds her that the king had promised her two boons, which kaikeyi has not claimed. So there will not be a better time to claim her right. Manthara’s love and affection for her own mistress is overshadowed as she is perceived as the instigator of rama being banished to the jungle for 14 years followed by the death of the king. There are scholars who point out that rama as a boy teased Manthara about her deformity, which could account for her revenge or for her being the instrument by which the consequences of his wrong attitude are visited on him (Barz, 1991; Buck, 1991). In another version of the story, Indra, the king of devas, asks Manthara to convince kaikeyi to make Dasharatha to exile rama, because only when rama is exiled will he face ravana and kill him. Although Manthara agrees to do Indra’s bidding, she curses Indra that, for the wrong he did to rama, he would never prayed to by any Hindu family, which holds true even now.The surprising feature is that in the public mind both Manthara and Shakuni, are remembered as deformed and evil. Their powerful use of strategy is not highlighted, as if recognition of the disabled as human and ‘normal’ and, thus, loyal do not go together. readers would be interested to know that till date very few people are given

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the names of Manthara and Shakuni as they are constructed as evil, located in their deformed bodies.

Disability to be Feared Another noticeable feature of ramayana is that king’s Dashratha’s death is seen as retribution for killing Shravan kumar, who is a devoted son of blind parents and their only anchor. This story goes many years back when Dasharatha was very young and had gone hunting. while searching for his prey in the forest, he heard a sound near the river. It appeared to him as though an animal was drinking water. Being an expert archer, he aimed his arrow at the source of sound. Soon he heard a human cry. At once he ran to see who was hurt. He found a boy lying in a pool of blood. Much as he wished, there was no trace of a wounded animal. Dasharatha was filled with sorrow and grief looking at the dying boy who asked the king to take water to his aged parents. Dasharatha went to the parents of Shravan kumar who cursed that one day the king too would pine for his son. when Dasharatha was in tears at his deathbed as he recalled rama’s banishment, he suddenly remembered the curse. The belief that the curse given by the blind parents of Shravan kumar is effective as it creates a fear of the disabled. Such fears are yet again positing the disabled as people to be avoided and a deconstruction of these anxieties are hardly ever undertaken. However, what is made critical is that there is a power to hurt or curse, which comes from the vantage point of disability. It is significant that loss is symbolic of the curse, that is, Dasharatha’s death results from the grief of separation from his son. The idea of retribution, therefore, is very strongly embedded in the Indian psyche.

Disability and Desxualization Yet another context from the epics equates disability with desexualization. In the ramayana, Surpanakha, a demon and ravana’s sister, transforms her scary appearance and presents herself as an extremely attractive woman to rama. rama says that since he is a married man, he cannot accept her proposal and rebuffs her overtures. However, he tells her to go to Lakshmana, his brother, and propose to him. Lakshmana tells her that he is just a servant of rama, if he were to marry her; her status would not be more than a maid. Since rama is

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going to be a king, it would be better to marry him, as then she can be a queen. when she returns to rama again, he again forces her to go back to Lakshmana. At this stage, Lakshmana tells Surpanakha, Puni phiri Ram Nikat so aayi Prabhu lakshamana pahin bahuri pathatLakshamana kaha tohi so barai jo tran tori laaj pap [arharra (only that man can marry you who has no pride and who vows to leave his pride). Provoked and embarrassed, Surpanakha retaliates by showing her original self, which is ugly and hideous. Since this presentation scares Sita, rama’s wife, he indicates to Lakashmana, who promptly cuts off her nose and ears. while the original texts imply within this scenario an ulterior design of God to get rid of all the demons, the implicit assumption is that deformity is a punishment for transgressing the boundaries that are set by the more powerful, god-like ‘normal’ human beings. The obvious interpretation is that if the body were to be deformed, sexuality would be curtailed.

Overcoming Disability Yet another narrative within the ramayana tells a story about king Janak who, desirous of achieving, self-realization and closeness to God, searched for a spiritual Master who could give him true spiritual knowledge. He also required a person who would do this speedily almost in as much time as it takes to mount a horse. Though the task seemed impossible, Ashtavakra came to the king’s palace and said that he could give the king the knowledge he required. Ashtavakra had a body marked by eight different deformities (Asht means eight and avakra means twisted). However, as he took his place in king Janak’s court, everyone who was there burst out laughing. one reason was the disbelief that anyone could dare to undertake the task, which appeared impossible. Second, it seemed unimaginable that a man with such massive deformities could have any ability. An unperturbed Ashtavakra, however, brought the attention of the king that his courtiers were only attending to his outer appearance and not to his soul. Such positive constructions, however, are neither televised nor discussed at other platforms. Disability thus retains the stigmatized existence, and though the message of overcoming is given to every disabled person, there is no consideration for the depth of the pain and the emotions involved. Further, the fact that ‘overcoming’ is rooted in the traditional medical model is hardly ever recognized.

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disAbility As punishMent Yet another instance which, in my reading, is historically responsible for the marginalization of the educational issues faced by the disabled, can be traced back to the story in the Mahabharata of Dronacharya, teacher of the royal children in Hastinapur. He would give lessons in various arts, including the art of archery. The lessons were closely watched by ekalavya, who was a Shudra by caste. when ekalavya came to know about Dronacharya, he approached him with the purpose of becoming his pupil. Dronacharya refused him on the dharmic grounds that only kshatriyas could learn archery and since ekalavya was not one, he was not eligible to become a pupil. while the casteism inherent in this has been reflected upon by every scholar interested in the hierarchy-based Indian society, what is not easily discernable is the assumption embedded in the rest of the story. The boy did not give up and was determined to master the art. He installed a clay idol of Drona that he worshiped as his Guru (teacher) and started teaching himself archery. The talented and devoted ekalavya soon achieved excellence in archery, and attributed his success to his Guru. one day the barking of a dog disturbed the Pandavas. Soon after, the barking stopped, and the dog came to the place where Dronacharya was teaching archery to the Pandavas. They noticed that its mouth was filled with arrows because of which it could no longer bark. But not a single drop of blood was spilt nor was there any wound. It was an archery skill par excellence and certainly beyond them. The peerless and invincible warrior Arjuna stood stunned. Drona and Arjuna were curious to know the archer and reached a spot where ekalavya was practicing with his bow and arrow in front of the clay image of Drona. It did not take Drona long to gauge ekalavya’s superior qualities. what bothered him, however, was the realization that he was indeed better than his favourite pupil Arjuna. To remove ekalavya as a competitor, Drona questioned ekalavya about his teacher. As expected, ekalavya told him that it was Drona’s blessings in the form of the clay idol, that were responsible for his achievements. on hearing this Drona blessed him, but asked for his fees, the Guru-dakshina. It was customary in those times to give to the Guru whatever he asked as his fees. Drona asked ekalavya for his right thumb, which would end his archery skills and superiority over Drona’s favourite disciple Arjuna. ekalavya fulfilled the guru’s demand, not realizing

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that it was the Guru who clearly perceived a threat. Dronacharya needed to find a way to save the spiritual Varna dharma. ekalavya was going to corrupt it by becoming a mighty warrior. The incident, however, is a glaring example of disability being used as a way of depriving the skills that a person possesses. The moral of the story is that a disabled ekalavya will now have no way of excelling at archery. After that, Dronacharya left the place, along with Pandavas, well satisfied in his heart that the dharma had been saved. none of the five righteous Pandavas, including Yudhishtara who was considered the epitome of justice, objected to this cruel injustice. In my understanding the negative attitudes are reflective of the teachers reactions to disability as the meaning of disability is embedded in hegemony of normality. It is critical for the society to deconstruct these symbols, so that the social and cultural meaning of disability can be deciphered. It is quite clear that disability is a cultural construct which is based on a sense of ‘perfection’ or ‘societal norm’ that has been constructed from religion, scriptures, mythology, folk tales, and metaphors. According to Branson and Miller, The exploration of the concept of disability lays bare the contours applied to disability as a discursive construction, the implication is that our society because the construction of a pathological population is at the core of the construction of every other person’s “normal” subjectivity, as they define, understand, justify, and console themselves in relation to this embodied other (2002: x).

This chapter highlights the paradoxes in constructing disability in a culture like India, which has a multiple reality. However, the historicity indicates that hope to get a better life was very clearly evident. As the Dalai Lama writes in this regard, we humans are social beings. we come into the world as the result of others’ actions. we survive here in dependence on others. whether we like it or not, there is hardly a moment of our lives when we do not benefit from others’ activities. For this reason, it is hardly surprising that most of our happiness arises in the context of our relationships with others. nor is it so remarkable that our greatest joy should come when we are motivated by concern for others (1999: 62).

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notes 1. Bhatt’s example is used by karna (1999: 28) . However, the sources are contradictory as the original quote used by Bhatt appears in Horowitz (1923), whereas karna has quoted Bhatt in kessler (1938). This seems to be anecdotal evidence and has no definitive support the fact that ‘crippled children’ were thrown into the Ganges. 2. A caveat is that the Vedas require deep contemplation as well as thorough research. My understanding has drawn from the location of a disabled woman within the lived reality of impairment. 3. In Book 1, hymn CXII. Asvins are described as follows, ‘Come hither unto us, o As´vins, with those aids wherewith in fight ye speed the warcry to the spoil . . . Mighty ones, with what powers ye gave Para¯ vr.j aid what time ye made the blind and lame to see and walk; wherewith ye set at liberty the swallowed quail, — Come hither unto us, o As´vins, with those aids’. 4. wherewith ye helped, in battle of a thousand spoils, Vis´pala¯ seeking booty, powerless to move. wherewith ye guarded friendly Vas´a, As´va’s son, — Come hither unto us, o As´vins, with those aids. 5. In Book 1, hymn CXVII, verse 18, ‘To him, rjrasva, gave ye eyes, o Asvins; light to the blind ye sent for perfect vision. To bring the blind man joy thus cried the she-wolf: o Asvins, o ye Mighty ones, o Heroes, For me rjrasva, like a youthful lover, hath cut piecemeal one and a hundred wethers, ‘Great and weal-giving is your aid, o Asvins, ye, objects of all thought, made whole the cripple. Purandhi also for this cause invoked you, and ye, o mighty, came to her with succours’ (verse 19). 6. In Book 1, hymn XXXIX. Asvins. (a) As ‘twere the name of father, easy to invoke, we all assembled here invoke this Car of yours, Asvins, your swiftly-rolling circumambient Car which he who worships must invoke at eve and dawn. (b) Awake all pleasant strains and let the hymns flow forth: raise up abundant fulness: this is our desire. Asvins, bestow on us a glorious heritage, and give our princes treasure fair as Soma is. (c) Ye are the bliss of her who growth old at home, and helpers of the slow although he linger last. Men call you too, nasatyas, healers of the blind, the thin and feeble, and the man with broken bones. (d) Ye made Cyavana, weak and worn with length of days, young again, like a car, that he had power to move. Also, the likelihood is that an omnipotent power was given to the different forms of divine form. hymn LXVIII: (a) THIS here is Soma, ne’er restrained, active, all-conquering bursting forth, rsi and Sage by sapience,

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(b) All that is bare he covers o’er, all that is sick he medicines; The blind man sees, the cripple walks. (c) Thou, Soma, givest wide defence against the hate of alien men, Hatreds that waste and weaken us. 7. I recently met His Holiness Dalai Lama, leader of the Tibetan Buddhism, who told me that he sees a lot of potential in disabilities such as unselfishness and gracious life. notwithstanding his affection, my question is whether the disabled should overcome their problems and not make demands on existing structures. 8. Garbha Upanishad is from the krishna Yajur Veda. It explains in detail the processes from the conception of a child in the womb to its birth. Garbha means womb and there is a mention about each stage of development of the foetus. This Upanishad expounds the details of what human consciousness goes through, while it still resides in the womb, in the form of a fetus. The soul trapped within the maternal womb, goes through a state of emotional turmoil, remembering past births and deaths. Garbha Upanishad states that the fetus before birth promises God not to repeat evil deeds but during the process of birth, a force called the ‘Vaishnava Prana’ touches him, and he forgets his thoughts and prayers. This entails repeating the process of learning and seeking the ultimate truth once again in the life granted. 9. Surdas was a blind poet. 10. For this section, I have referred to eugene watson Burlingame (2005) Buddhist Legends, Volume 1, ed. by Charles rockwell Lanman. Cambridge: Harvard University Press; nalinaksha Dutt (1993) ‘Great women in Buddhism’, in S. Madhavananda and r. C. Majumdar (eds), Great Women of India, pp: 253–74. Calcutta: Advaita Ashrama. 11. Sotapatti consists of sota meaning ‘stream’ or ‘ear’ and apatti meaning ‘entering into’. Usually, Sotapatti is translated as ‘stream-entry’ but it can also mean ‘ear-entry’ — in the sense of the ear being penetrated by Dhamma. A close study of the Suttas suggests that the latter translation is also valid because the Buddha’s disciples were called savakas or listeners of Dhamma. 12. There is a poem Manimekhalai written by Sithalai Sattana. within the narrative, the eponymous heroine goes for a pilgrimage to Sri Lanka, where she worships the nagadipa shrine in Sri Lanka. In the process of worshipping the Buddha’s footprint, a deity at the shrine gave her a miraculous bowl from which she could feed any number of people without exhausting the food supply. when she returned to kaveripattanam she gave alms daily to the poor in a public hall. 13. This is the Twelfth Parva, the favourite of the wise. It consists of 339 sections and contains 14,732 slokas.

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14. Samrita Trust is a registered, non-profitable organization established in December 2006 with a vision to change the lives of blind students by providing suitable learning devices for their education. The mission of the Samrita Trust is ‘education of visually handicapped — Preschool to employment’. The learning devices provided by Samrita Trust help visually handicapped students (hereafter referred as ‘blind students’) to study on their own and perform better in examinations to get degrees and jobs. The Trust is inspired by Louis Braille, inventor of Braille Script, and the indomitable spirit of Helen keller. 15. Dr Ambedkar in his book The Untouchables: Who Were They and Why They Became Untouchables?, reproduced in his Writings and Speeches.

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enerally the answer to the question of who is disabled is always accompanied by the corollary of who is able or non-disabled. In India, and I presume elsewhere, disability does not have a unified or single definition. This lack of uniformity, I believe, is a critical issue because if there is no consonance among policy-makers, recipients never receive their due. Definitions of disability cannot be articulated at only face value, as the lived reality of the disabled is equally important for understanding disability. The archaic term ‘handicapped’ is derived from the phrase ‘cap in hand’ — often assumed as the only viable means of living through charity (further discussed in Chapter Four).The use of degrading language perpetuates the focus on the differences so that one can understand the humanness. we visualise the wheelchair, the cane, hearing aids and the speech synthesizer, rather than the person, thus creating an invisible attitudinal barrier based on inert and over-determined causation. This may be the greatest obstacle that disabled people face both in and out of the society as a whole. As Snow (2007) asked, ‘Do you want to be known primarily by your psoriasis, gynaecological history, the warts on your behind, or any other condition?’1 A static view of disability becomes as an essentialist view with the disability defining your very being.2 Thus, the impact of disability, whether they are true physical impairments, such as muscular dystrophy or cerebral palsy, sensory impairments such as deafness and blindness, or socially constructed disabilities, is intensified by the perception and language used by others. Though a list of achievers includes Surdas, the famous Hindi poet, Ashtavakra, the renowned Indian saint and scholar, Franklin D. roosevelt, Beethoven, Helen keller and Stephen w. Hawking, who provide social inspiration, they are also grave reminders of the state of affairs with regard to the issues central to the lives of disabled people. Although the average is that oneamong 10 persons in the world has a disability, making a total of about 600 million. According to the latest United nations (Un) estimates, disabled people are sometimes

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‘invisible’, as they are under-reported in the national census (Ghai, 2003). The Un estimates show the enormity of the disability issue. This vast minority, which constitute the disabled, frequently live in dismal conditions, owing to the presence of physical and social barriers that prevent their integration and fuller participation in the larger community life. As a result, millions of children and adults are segregated, condemned to lives of acute marginalization, and virtually deprived of all their rights. Before I discuss the definitional issues, it is pertinent to begin with an examination of the prevalence of disability. Since the 2013 statistics are not available, we will use the January 2001 census reports. overall, there were 21,906,769 disabled people in India. It is the first time that the census data puts India’s disability rate at 2.13 per cent and is marginally higher than the national Sample Survey organisation’s (nSSo) estimate of 1.8 crore. The census commission believes that these results are more precise as the nSSo figures are only a rough estimate. This is in contrast with Bauer and Sharma (1997) whose estimates put the number of disabled population in India closer to 70 million. The census as well as the nSSo figures raises a very significant question with respect to the prevalence rate — were the earlier estimates wrong? or is there a politics of numbers? As Mitra and Sambamoorthi conclude, ‘prevalence estimates in the census and the nSS are clearly not comparable . . . and it is unsure what aspects of disability are captured by the census and nSS current disability definitions’ (2006: 4024). That the government has not been too concerned about these figures is reflected it its initial decision to exclude the disabled from the 2001 census. The rationalization was that the earlier 1991 census revealed a very low incidence, which did not warrant the recognition of this category in the current census. what was omitted from the discourse was that the 1991 census’ framing of disability was in terms of total incapacitation. no individual, despite the severity of his or her impairment, can be totally incapacitated (Ghai, 2003). As Jeffery and Singal (2008) indicate, definitional issues are at the heart of the differences between the estimates. They point out, ‘taking all disabilities together, the stricter definitions provide a lower estimate of people with disabilities of 11.8 million; taking the wider definitions generates an estimate of 26.5 million’. notwithstanding the game of numbers, it is, perhaps, worthwhile to remember that it actually took a countrywide protest to assert the importance of a head count. The silver lining regarding

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the census is that while counting heads, the disability question is among the top 10 questions. In fact, it appears even before the question on one’s mother tongue. Further, the categories of disabilities have been expanded from five to eight and include mental illness and multiple disabilities. Those with disabilities besides the seven listed can be accounted for under the eighth category titled ‘other disabilities’. Since disability is highly stigmatized, there is a reluctance to divulge accurate information. Very often, it is not the disabled person alone but the entire family who feel disgraced because of their child or relative’s disability. This observation is substantiated by krefting and krefting (2002) who compared prevalence rates of disability between developed and developing countries. In spite of the achievement of census 2011, there are many ‘missing people’ in developing countries. Possible explanations include definitional concerns, inaccurate disability incidence or prevalence studies, the tendency to keep disabled persons hidden, and premature deaths of people who become impaired or disabled. regional surveys indicate that the concentration of people with a physical handicap in rural areas was five times higher than in urban areas (rao, 1990). while all factors listed by krefting and krefting (2002) are significant, one particular aspect of identification and the measurement of disabled population is the definition of disability. Consequently, the subtext is very noteworthy as the need to understand disability is implied in the definitions. I have divided this chapter into sections. The first section discusses the critical need for a definition of disability and understanding terms that label disability. In the second section, my focus is on problematizing the definition, which I must admit is a necessary evil. In the third section, I introduce legislations that write disability as a category.

definitionAl Riddles It is important to acknowledge the need to articulate the meaning of disability clearly as conversations about disability cannot be initiated without highlighting the innumerable ways in which disability has been understood. For most people, we do not need additional qualifiers; ‘For most people “it goes without saying” that they are human beings For disabled people in many historical contexts “it has to be said”’ (Hughes, 2007: 677). For instance, in my own teaching of psychology, I have often asked students on what they understand

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as the notion of disability and if we all could understand the politics of disability by simply looking at the opposite pole — ability. The answer is not as simple because the very conceptualization of ‘disability’ is framed in the light of discourses of ‘ability/alterity’ and the category can itself mean many things and cover quite a broad range. It can be seen as a medical condition, a health condition, status contingent on privileges, concessions, tax benefits, or even an allowance to drive a custom-made car. Such an understanding of disability is, thus, perplexing and mystifying. we are familiar in India with how some groups, such as the Dalits, remain marginal. Similarly, disability is read differently across countries and scholars have engaged with the definition of disability in a variety of ways. In any subject area, the definition of the problem affects what solutions will be sought and how. For instance, the interpretation of homosexuality or hijra (eunuch), historically, is dependent on whether society considers it as an aberration in terms of disease or defect. The flux is clear when the Delhi High Court legalized homosexuality by striking down Section 377 of the Indian Penal Code (IPC).3 Given the judicial understanding of Section 377, the State had the power to hound and badger people with an alternative sexual orientation. Though there are contradictions, the order assumes significance as the process of ‘othering’, whether it is disability or sexual orientation, is being challenged and offers a platform to understand diversity issues. Similarly, it was not very long ago that women were viewed as biologically fragile and emotional and, thus, incapable of bearing the responsibility of vote, owning property, deciding whether to abort a female foetus or divorce. In essence, every biological reality can be seen as a defect, as a medical condition or as a human rights and social issue. Following an analysis of a patriarchal structure, equal rights and respect for both women and men became the rule rather than an exception. To delve deeper into the notion of ‘who is disabled?’, India has to understand the different strands within which the understanding of disability has been assumed and comprehend the finer shades of the terms and definitions that determine the fate of those labelled as ‘disabled’. There are many definitional possibilities — such as a person stuttering, using spectacles or having a vision impairment that requires a font size of 24 to read, having a dark complexion or a limp, being obese, or suffering from rheumatoid arthritis — that can pose questions as to whether the person has disability. notwithstanding

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the social factors, the medical profession, however, still has considerable control. My understanding is that using different terms and their implications is more than just an inconsequential objection for it has important significance, both for provision of services and the ability to control lives with disabilities. Since disability is a consequence of widespread discrimination, the discourse raises difficult and often uncomfortable personal, social and political questions. More so, because the advocacy of disability has resulted in forcing the government machinery to improve the existing services for the disabled. However, no government will commit without understanding the need as well as the financial repercussions of such a commitment. within the Indian context, it is not uncommon for disabled people to be a part of a general discourse. The first time I heard the ‘we all have a disability’ argument was when I went to live in a hostel and complained to my warden about the Indian style toilet. The warden took pains to explain to me how she was getting old and that she too had arthritis but her pain had to be taken in stride. This argument is demeaning in its implications and does not augur well for the disabled. Similarly, on innumerable occasions well-intentioned friends and family try to convince the disabled person that they are equally disabled in certain skills, such as driving, being single or travelling alone. It is, however, always difficult to explain that while there can be innumerable marginal categories, disability is a condition that debars a person from being a part of society itself. what is significant is that most definitions of disability have been provided by people who do not themselves experience the daily problems of disability. Any disability studies or activist engagement mandates that disability should be clearly defined. However, developing functional definitions of disability is a notoriously complex task. Consequently, oliver and Barnes suggest that definitions of disability can be divided into two groups — (a) official definitions produced by professionals and academics and (b) those developed by disabled people and the organizations regulated and run by them (1998: 14). The definitions of disability assume significance as they are instrumental in diagnosing a particular condition as belonging to a specific category, which can have far reaching consequences in shaping the identity of those subjected to its ramifications. on one hand, we tend to adopt a binary conception of disability. on the other, it is equally difficult to accommodate the expectations of those who use a flexible definition to include even the one sat the periphery. There are

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hundreds of different disabilities with as many causes — some people are born with disabilities; others become disabled later on in their lives. Some disabilities exhibit themselves only periodically such as fits and seizures, others are lifelong, constant conditions; there are those in which these verity stays the same while in other cases they become progressively worse, such as muscular dystrophy and cystic fibrosis; there are also ‘hidden’ disabilities such as epilepsy or haemophilia (impairment of the body’s function to control blood clotting or coagulation). Consequently, in India, not only are there clear categories such as the disabled and the able-bodied but even access to State welfare is contingent on a medical certificate indicating the percentage of impairment decided by the State-constituted board. For instance, disabled children must produce a medical certificate proving their disability to seek admission in government schools and take advantage of the very meagre facilities offered. These stipulations have to be read as supporting traditional conceptions of dependency. Medical recognition of disability does not challenge the perception that continues to look at disabled people as passive clients and victims of their own destiny. The ‘benefits’ that accrue are seen in terms of social welfare rather than as their rights as members of a minority group. I believe that once a category such as disability is labelled, society does not allow for change. rather, the tendency is to confirm the label and to disregard, disbelieve and invalidate the disabling part. Since we do not tangentially cross-examine ‘disability’, the notion of fixity stays. As Gergen et al. suggest that, ‘diagnoses, official and unofficial, often concretise identities that limit people; they create black boxes with few obscure exits, and they form obstacles to more viable and liberating definitions’ (1996: 5). Diagnostic labels, therefore, govern the lives of the disabled — they bring forth pathology, create problem saturated stories and create the relationship of the professional and the patient. Diagnosis can be understood both as a medical process as well as a system of analysis of people’s lives based on special knowledge and expertise of professionals. It is a tacit agreement within particular disciplinary areas to make sense of certain events in a particular manner. one way of understanding diagnosis is that it can unlock the State’s resources and other forms of support that is not generally available. In this sense the diagnostic label is like a double-edged sword. Unless you have it you don’t get access to services. However, it can also lead to disrespectful and

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dehumanizing treatment, and a severe restriction of opportunities. Categorization produces an official designation whereby one category is assigned greater value over others. For instance, according to Degener (2006), ‘while legal definitions of other categories such as sex, ethnic background, or sexual orientation also raise questions of demarcation (Minow, 1991; Tobler, 2003) disability is even harder to define because it encompasses numerous conditions of mind and body, and the boundary between ability and disability seems to be less clear’. However, once you have it, labels can be instrumental in the exclusion of some people from the mainstream society. Though doctors certify disability for the State, Stone argues that ‘the concept of disability is fundamentally the result of political conflict about distributive criteria and the appropriate recipients of social aid’ (1986: 172). An engagement with the discourse of disability has to reflect a concern with the diagnostic systems, which give a sense of legitimacy, confidence and predictability both to the professional and to the client. Thus, certain questions need to be articulated. These include (a) who has the power to name? (b) who seeks diagnosis and why? (c) How reliable are diagnostic systems? (d) what part does diagnosis play in the maintenance of professional power? (e) what role does diagnosis play in creating potentials and restricting possibilities for disabled people? (f ) what is the role of impairment in the lives of individuals or what signs and symbols of an apparently normal/ able culture apply in such situations, as diagnosis is intrinsically connected to the definitions of life conditions? At a conceptual level, the definitions are ‘the most perplexing and ambiguous’ issue in the understanding of disability, thus setting the tone for the slippery and subjective nature of much of the philosophical as well as the pragmatic debate confronting the area. Disability, therefore, I argue, has no essential nature. However, there is a belief that disabled people’s lives are determined by how they are defined. This belief can contest the realization that there can be a configuration of both abilities and disabilities for every human being. For instance, some people have an excellent understanding of music but are bad at maths. Similarly, some can never understand economics but love crosswords. In one sense even though we label ourselves as ‘normal’ we never think of disabilities as part of the human diversity. For instance in an area of g mobility impairments4. It is possible for one person to define them self as disabled when another person with an identical condition would not. one reason for this can be a perception

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that ‘disabled’ is a stigmatizing label. However, the understanding of diversity is not an easy endeavour. For instance, my educational merit, did not allow me to apply for the civil services exam or as popularly known as the Indian Administrative Services in 1978. In retrospect, I might not have appreciated the administrative responsibilities, the deprived status, however, stayed with me. The rationalization of being underprivileged on account of disability implied power of the normative society. The fact that establishment scrupulously defines the narrow scope within which disabled people must find the way and they are often described as immobile partially because of the limited perspective of disability. As Meekosha (1999) puts it: The category ‘disability’ is itself very loose — covering people whose impairments may be intellectual, physical, sensory, and psychiatric. Impairments may be temporary or permanent and in many ways ablebodiedness is a temporary condition. Yet we all have basic rights whatever the status the wider society seeks to impose on us (1999).5

The classification arrangements include social institutions such as social welfare departments, rehabilitation councils, special education developed to assist disabled people contribute to social exclusion and limitation of opportunities. An anthropological construct castification6 is a term used by which describes the differential, institutional exploitation of some minorities with resultant assignment of lower social status. According to them, central tenet of this discussion is that at least some of the difficulties faced by persons with disabilities are not the result of functional impairments related to the disability, but rather are the result of a castification process embedded in societal institutions for rehabilitation and education and enforced by well meaning professionals.

Castification processes, seem to have their roots in a determinist view in which people who are different are viewed as somehow less ‘human’ or less capable. The definitional power of dominant classification implies that appellation may not only be applied, but made to attach , summing the individual and generating a whole discourse on disability or any such label that is derogatory. Thus, within the disability literature, the subjugating impact of castification has been referred to as stigma (Goffman, 1963), which affects interpersonal interaction (Gove, 1976) and may mitigate against political activism

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(Scotch, 1988; Scott, 2010). Disability literature, has interrogated the description of castification of people with disabilities by rehabilitation professionals. Salifos-rothschild says, A serious overall curtailment of options occurs when professionals adhere to a stereotyped role for . . . [people with disabilities], which, like sex-appropriate roles, offers a single ‘appropriate’ model of thinking and behaving for the . . . person and precludes a whole range of ‘inappropriate’ options, regardless of the individual’s abilities, talents, and inclinations (1976: p. 41).

Thus it is not difficult to see a circularity of reasoning whereby the same construct (i.e., disability), which is used to explain the individuals’ situation, is also used to explain the limits of acceptable behaviour. The confining nature of these classification systems is clearly perceptible to disabled people who require services in an effort to augment their autonomy and self-determination. Instead of being considered as a human being on a par, disabled may be defied challenged by able-bodied persons asserting a fight to decide what kinds of services they need. A society which reinforces the able bodied ‘individuals tends to go in accordance with deterministic beliefs that, like those of cultural conservationism suggesting that the behaviour or needs of groups of individuals can be understood by their common attributes (e.g., disabilities, caste, gender, sexual orientation). Identification therefore is a critical part of classification. As romaine says ‘who has the right to decide how a person shall be called decided how that person is classified and defined’ (1999: p. 228). For instance Mark Sherry (2007) defined disability in terms of a ‘social model’ of disability and quite a few studies within disability have distinguished between disability and impairment — where impairment is defined as a form of biological, cognitive, sensory or psychiatric difference that is defined within a medical context, and disability is the negative social reaction to those differences. The justification for such a distinction is to separate the experience of biological difference from the prejudice, discrimination and other negative social consequences that many disabled people experience. According to edwards notions of disability are tied to the values embedded in the given scholar’s understanding. For instance, engelhardt says, ‘we encounter disease, illnesses [and] disabilities . . . through a web of important non-moral values’ (1996: 206). Similarly Harris views disability as a harmed condition, one we have a strong rational preference not to be in it (2000: 97). Similarly nordenfelt writes, ‘the very classification of a

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person as handicapped [sic] presupposes an ethical or political decision (2000: 123). Thus, there is an inherent hierarchy in the very understanding of disability which is reflected in the categories that are used to define the character of the disabled versus the able bodied. For instance able/ disabled, civilized/savage, rich/poor, rational/emotional, mind/body, normal/abnormal are a polar/binary opposites. In every set, one pair is the privileged. one is seen as ‘having’ while the other is seen as ‘lacking’. Understanding disability is thus loaded with such binary oppositions of inclusions and exclusions the dominant ideo-logies in Indian culture have continued to operate paradoxically in characterizing the binaries that define social realities. while in principle they might be postulated as complementary, their actual meaning/working is oppositional. within India there is a strong cultural belief that while the female is opposed to male, she is at the same time encompassed in the male. This is, for instance, symbolized in the form of lord Shiva Aradh nareshewar, where the left side is depicted as female and the right side as male. Similarly, Pursha (man)/ Prakriti (nature), touchable/untouchable, represent the same paradox. Therefore the notions of disability are derived on the notions of ability and normalcy. Many people do not like the prefix ‘dis’ as it has associations of lack of, severance from, or antagonism to, whatever term it precedes. As Linton, puts it, ‘The prefix creates a barrier, cleaving in two, ability and its absence, it’s opposite’ (1998: 30). Disability is the ‘not’ condition, the repudiation of ability, the way society makes the distinction between these groups of people positions the one termed disabled as inferior. However, categories are more than simple containers. They decide and shape destinies of members of the group and of the group itself. Therefore, the boundaries that separate disabled people from non-disabled people cannot be based solely upon objective criteria. Though any social category can be understood dynamically, disability is read differently as disability is assumed to have a specific character, especially the certification. It is clear that state scriptures and culture inundate the body with meanings that are beyond their understanding of biology. Consequently, bodies that are conceived of as disabled act as locations where social anxieties get deposited in such a way that variation/difference is understood as deviance. Disability primarily signifies exclusion, which is, produced through a shifting, interconnected web of linguistic, legal, medical, political, social, economic structures.

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teRMinoloGy notwithstanding the classification issues, naming disability is or in other words terminology is an another decisive issue. representation of disabled people has been laden with contradictions because of ambivalent attitudes towards disability. Since society is uneasy or mortified about disability, many euphemisms have been created to describe disability and disabled people.7 The language we use to talk about disability plays an extremely important part in the way society views disabled people, as disabled people both activists and academics have found it necessary to identify and intervene in the process through which politics of language becomes an important vehicle in understanding disability. The concern with the proliferating effects of the deficit vocabulary and maintenance of the very problems it attempts to describe, becomes fairly acute when one acknowledges the serious impact it has on the lives of disabled people. Disabled people are conscious of the fact that the diagnostic categories commonly used within the discourse of disability imply what Gergen (1990) refers to as ‘implicit hierarchies’, which have the effect of reducing persons both in status and to the labels themselves. For Gergen, these labels operate to establish the essential nature of the person being described, and by which we understand the person in the world. within documented research, there does not seem to be any uniform terminology either in activism or academic research on disability. I have recently reviewed literature on research in disability and was astounded with the multiplicity of terms to describe the disabling experience. A cursory glance at the literature reveals that a variety of terms such as — the handicapped, blind, visually impaired, learning disabled; special, disadvantaged, deaf and dumb, mentally retarded, disabled, differently abled, differently challenged, children with stuttering, people with disabilities and hearing impaired (Ghai, 2001). what is noticeable and perhaps little disheartening is that no active engagement with the terminology has taken place. while different terminologies have been evolved, none of them have been accepted without considerable debate. nuances between different terms such as the use of disabled people or people with disabilities have raised significant underlying assumptions. A number of objections have been raised with regard to terms such as invalid, confined to wheelchair, mentally retarded, blind and deaf and dumb. within the Indian scenario, the terms disabled and

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handicapped have been used synonymously. Sometimes blind people have been referred to as Surdas, who, as mentioned earlier, was a great poet. Similarly mand budhi (slow witted) and viklanglapahij (disabled/handicapped) have been used. rao (2001: 545) discussed the use of word inconvenience by some Bengali mothers to describe a disabled child. The word inconvenience according to her defines the relationship of a non-disabled person toward the disabled person as being essentially characterized by support and acceptance. The word according to rao also carries a moral imperative, which makes the non-disabled person’s refusal to offer support to a person with inconvenience, a moral outrage. Though I agree with rao to some extent, in my view the Indian society’s transition from an autonomous one to a globalized economy has eroded many such values. Perhaps it is rao’s location as a visitor from America, which is responsible for her too optimistic views regarding social attitudes towards disability in India. Among the researchers, the tendency has been to use the terms according to their specific beliefs without integrating it within any coherent perspective. There are instances when within a given study, the terms visually handicapped, sightless and visually impaired have been used interchangeably (Deb et al., 2002). As Pal says, ‘From the early use of derogatory terms such as lame, deaf, blind, imbecile etc. for the different categories of the disabled, today the language discourse is dominated by terms such as differently able, physically challenged, mentally challenged etc.’ (2002: 32). This lacuna is surprising as linguistic stereotyping and the use of unacceptable terms referring to disability have long been a focus of concentrated attention. Discriminatory language whether outright verbal use or thoughtless stereotyping, has just as much power to exclude as other forms of marginalization and is known to impact on a deeply personal, stigmatising level. It labels people. In view of the fact that human beings are possessed with the labelling syndrome, we unintentionally use such language to stereotype, construct and classify people as disabled without looking beyond the individual. Media representation thereby becoming part of the vernacular then adopts the terminology. Challenge insinuates a struggle, sport or game in which disabled people can courageously uphold success thereby acting as shining examples of un-protesting uniqueness with the autonomy that is befitting for government and societal abdication while the debates

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regarding terminology are important, for the present purpose, I have used the term-disabled individual thus placing the disability as the first categorical representation of that person/woman. I do this with the understanding that for a woman or a man, disability does become the central feature and the issue of personhood assumes secondary significance. I have, thus, used this phrase as an identity category for political reasons. My contention is that since society disables a person, a political process is required to undo the harm. over the course of the last three decades or so, the term disabled people has been used when disability is referred to as a form of social oppression, experienced by people with perceived impairments and manifested in discriminatory practices (Priestley, 2001: xvii). This view is substantiated with the understanding derived from the Union of the Physically Impaired Against Segregation (UPIAS) (Disability Alliance, 1976: 3). According to them, it is the society, which disables by unnecessarily isolating and excluding disabled persons from full participation in society. This is what makes the disabled people an oppressed group in society. However, ‘person with a disability’ has remained a preferred terminology within the formal structural systems that work with people with disabilities and also within most advocacy and political organizations, at least in India. The reasoning behind this is that the person with a disability is a person first, and the disability is incidental to that. It is a way of fighting against the stigma of disability and re-emphasizing the humanity, wholeness and normalcy of the person. The objective of the person first and disability second is the understanding. Language is used, thus, to avoid the inherent objectification found within the term ‘the disabled’ and to escape what Dyer would call ‘the relentless parade of insults accomplished through the terms such as the cripple, the lame, the retarded, the blind, the spastic, or a collective, the handicapped (2001: 128). The origin of ‘people first language’ was rooted in the desire to create some distance between the person and the understanding that she/ he is not completely determined by disability, which was/is mostly defined as a lack or deficit. However, the usage did not initiate change in the understanding of disability, which made its use somewhat problematic. An analysis by Tanya Titchkosky points out that in a subtle fashion ‘the person first approach’ conceives of disability as a troublesome condition arbitrarily attached to some people, a condition (unlike gender, race or ethnicity) that is only significant

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as a remedial or managerial issue’ (2001: 1). when conceived in this manner, the political advantage is lost. My intention definitely is to convey that any terminology, which makes the disabled reject the language of deviance for a language of pride, self worth and power is to be welcomed. Disabled people are neither passive, nor untested enough to assume that the power to change definitions and reassert and forge an identity is possible.

Are Legislations the Key Word? I have chosen to highlight three definitions of disability and terms that are often used synonymously. The first one is a definition given by world Health organization (wHo) that intervened in the arena of disability by introducing a threefold scheme known as International Classification of Impairments, Disabilities and Handicaps, popularly known as ICIDH (wHo, 1980). The threefold division categorizes impairment, disability and handicap separately. This has been by far the most popular definition that has decided the fate of millions of disabled individuals. Box 3.1 gives the basis of ICIDH. Box 3.1: International Classification of Impairments, Disabilities and Handicaps Impairment: In the context of health experience, impairment is any loss or abnormality of psychological, physiological or anatomical structure or function. Disability: In the context of health experience, a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being. Handicap: A disadvantage for a given individual, resulting from an impairment or disability that limits or prevents the fulfilment of a role (depending on age, sex, social and cultural factors) for that individual. Source: wHo (1980).

However, the disability activists problematized the basic binary distinction between (physiological) impairment and (socially constructed) disability far too blunt a tool. The criticisms were that a biomedical framework was followed contingent on the individual.

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A determinist perspective was also followed, as there was a linear relationship between cause and effect. The terminology was negative as term such as handicap was used. Also an overlap between conceptual categories such as disability and handicap was problematic. The wHo definition, which had been extensively used in areas such as rehabilitation, education, statistics, policy, legislation, demography, sociology, economics and anthropology, following criticisms, was restated in the form of a new definition termed as International Classification of Functioning, Disability and Health (ICF). The ICF classification complements the International Classification of Diseases-10th revision (ICD), which contains information on diagnosis and health condition, but not on functional status. The ICF is structured around the following broad components: (a) Body functions and structure (b) Activities (related to tasks and actions by an individual) and participation (involvement in life situation) Many disability scholars such as Pfeiffer have debated the need for a classification as such Pfeiffer’s view seems to capture the major criticism from people with disabilities, as similar views have been expressed by the european Disability Forum (for example) (2000: 10–11). Pfeiffer emphasizes that as long as the conceptual basis of ICF is a medical model, disability issues will get medicalized. According to Pfeiffer, this may be the first step towards eugenics and a ‘classbased’ evaluation where ‘normal’ is the standard for measure. He attacks wHo for maintaining the stigmatization of people with disabilities. even in its revised form Pfeiffer sees ICIDH-2 (the draft version) as a threat to the disability community (ibid.: 11).8 The multilayered classification still gives power to ideas and values that link it to the medical mode of thinking. It uses words such as ‘disability’, ‘health’ and ‘functioning impairments’, which are historically based in medicine. Both ICF and ICIDH-2 do try to change the meaning of some of these charged words but the definitions are still weighed down with archaic notions and terms. For instance, the ICF defines ‘impairment’ as ‘problems in body function or structure such as a significant deviation or loss’ (ibid.: 10). Although this definition appears less medical and allows for diverse interpretations, it also centres the ‘problem’ in the body and mentions ‘deviation’. Moreover, by constructing negative and positive terms, that is, by framing impairments as negative, and functional and structural

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integrity as positive (ibid.: 11), the classification is making shaky assumptions about how these standards will be used by the primary users of the classification. My submission is that the complexity of ICF is difficult to imagine for people with difficult access to a formal education in english. I am uncertain whether the ICF ideas are going to be easily comprehended by enumerators and educators who have not been trained in english. As Maart et al. put it, Although the ICF proved a somewhat difficult instrument to implement, it did allow the identification of the major environmental barriers and thus specific challenges to society, disabled people’s organisations and the government in terms of ensuring the equalization of opportunities for disabled people (2007: 368).

The ICF was developed from the International classification of impairments, disabilities and handicaps (ICIDH), which was criticized for not allowing the measurement of environmental and social barriers and facilitators in the process of disablement (ibid.). we cannot conclude that the ICF classification is not problem centric, and the focus of individualistic attribution underpinning the ‘victim approach’ is still present. Critics of the ICF model describe it as the ‘new medical model’ with an emphasis on the individual and the impairment rather than the disabling environment (Imrie, 2004). Many commentators such as Barile (2003) and Jamison et al., (2006) indicate that ICF needs to be problematized. According to Barile ‘fact that the newly unveiled ICF and the push for globalization emerged at approximately the same time suggests that a new social reality will result from this shift in ideology’ (2003: 203). notwithstanding the issues of globalization, world Bank has researched, perhaps for first time, and from a global perspective, a document on disability and poverty in which ICIDH2 was acknowledged (elwan, 1999). Both this document and the notion of ICIDH2 are making somewhat similar statements on the locus of the problem, using the individualism–medical model with regards to impairment. Second, both are attempting to create identicalness, i.e., the standardization of everyday human activities needed for participation in the economic, political and social processes that shape our lives. establishing a rationale for these standards involve evaluating, promoting and rewarding or punishing the participants. This homogeneity could lead to physical, cultural, and economic hegemony and thus, colonialization.

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To my mind, in a country like India, as elsewhere, the politics of the reality of globalization and the neoliberal changes are clearly evident. Though the ICF touches upon the possibility of taking away the purity of the individual model the more significant issue is that of ‘uniformity; that is, The quality of having a uniform appearance or composition could lead to physical, cultural and economic dominion and thus, colonialization. The need to create uniformity of terms, as is being done with both versions of ICIDH and the new ICF (May 2001), is similar to what is happening in the social world (globalization, standard for trading, etc.) and therein what happens in the relationship between impairment and the social world. This approach informs us that standardization has always been problematic, primarily because those with the power to define impairment and disability were rarely those with impairments themselves, and less often representative of the grass roots. Similarly those who define set rules for globalization and standards for trading are rarely part of the general population that lives by the consequences of these decisions. Therefore, evaluating everyone with the same standards could lead to the misrepresentation of the reality lived by people with disabilities in a minority position, including gender reality. However, as pointed out in the Disability kar paper,9 is disability really on the development agenda? Critics have argued that the ICF represents little more than medical model thinking clothed in the language of a social model, particularly as many professionals continue to pay little attention to environmental impacts and focus instead on impairments. As Schoenberger points out ‘the problem is really much harder . . . and its origins much deeper. There are, first well-known issues of language that are quite profound because they are so closely caught up in one’s sense of self and how one makes sense of the world’ (2001: 366). The language of the ICF propounded by wHo was perhaps too alien for educated and literate faculty members who might not be exposed to the level of education that is present in the rural areas. Yet we cannot ignore the reality that disability is a part of the rural milieu. The definitional understanding therefore becomes even more complicated. The third significant source of definition in the last few years within the Indian context is provided by the Indian legislation entitled ‘Persons with Disabilities Act’ (equal opportunities, protection of

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rights and full participation) passed by the Government of India in 1995 (see Box 3.2). Box 3.2: Persons with Disabilities At (1995) The act categorizes disabilities into seven types and defines them as follows. (a) ‘Blindness’ refers to a condition where a person suffers from any of the following conditions, namely: l l

l

Total absence of sight; or Visual acuity not exceeding 6/60 or 20/200 (snellen) in the better eye with correcting lenses; or Limitation of the field of vision subtending an angle of 20 degrees or worse

(b) ‘Person with Low Vision’ means a person with impairment of visual functioning even after treatment or standard refractive correction but who uses or is potentially capable of using vision for the planning or execution of a task with appropriate assistive devices. (c) ‘Hearing impairment’ means loss of sixty decibels or more in the better ear in the conversational range of frequencies. (d) ‘Mental retardation’ means a condition of arrested or incomplete development of mind of a person which is specially characterised by subnormality of intelligence. (e) ‘Locomotor disability’ means disability of the bones, joints or muscles leading to substantial restriction of the movement of the limbs or any form of cerebral palsy. (f ) ‘Mental illness’ means any mental disorder other than mental retardation. (g) ‘Leprosy cured person’ means any person who has been cured of leprosy but is suffering from: l

l

l

Loss of sensation in hands or feet as well as loss of sensation and paresis in the eye and eye-lid but with no manifest deformity Manifest deformity and paresis but having sufficient mobility in their hands and feet to enable them to engage in normal economic activity extreme physical deformity as well as advanced age which prevents him/her from undertaking any gainful occupation.

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with regard to definitions adopted by the PwD Act, the Census of India stated ‘the concepts and definitions of disabilities coupled with measuring its extent and its types contained in the PwD Act, 1995 were found to be extremely difficult to canvass even in normal circumstances assuming people had time, were willing and forthcoming to share this information’ — (kishor Bhanushali in http://www.disabilityindia.org/nsso-census.cfm [accessed on 24 november 2014])

The complexity increases as before this rehabilitation Council of India Act, 1992 had a different set of definitions. However, as the disabled people became more socially visible, rehabilitation issues in the medical mould were re-thought as the Persons with Disabilities (PwD) Act, 1995, was passed unanimously in the Parliament of India. Many practitioners do not use the legal definitions.10 what are interesting are the definition changes with the requirement. For instance Another definition which is termed an ‘educational definition’,11 is provided. It seems that according to Pattanaik the term ‘disabled’ should be concerned with objectively definitions of impairment of structures and functions (1997: 17). A disabled person means he is only ‘handicapped’ which is partial but can compete with restricted range’. Similarly, Bharadwaj defines blindness as ‘a severe or complete loss of sight which impairs visual information of the person and results in minimising the integrity, confidence and mobility along with the loss of physical background’ (1995: 31). what is significant is that though mental illness was a part of the equal opportunities act, not much has been discussed and implicated in the discourse. what is stipulated in the ‘The Mental Health Act: 1987’ (no. 14 of 1987) intends to consolidate and amend the law relating to the treatment and care of mentally ill persons, to make better provision with respect to their properly and affairs and for matters connected therewith or incidental thereto. Similarly, the Indian decision-makers have not understood disability as a comprehensive category. rather a piecemeal approach and I must submit a charitable orientation has underwritten many of the stipulations. For instance many categories such as autism, cerebral palsy etc. were not taken into consideration in the 1995 act, which resulted in the national Trust for welfare of Persons with Autism, Cerebral Palsy,

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Mental retardation and Multiple Disabilities Act, 1999, no. 44 (30 December).12 It was proposed to act at the national level for the welfare of Persons with Autism, Cerebral Palsy, Mental retardation and Multiple Disabilities and for matters connected therewith or incidental thereto. To exacerbate the issue, announcements such as ‘The national Policy for Persons with Disability’, announced in February 2006, has wonderful stipulations but without financial resources. even if we assume that the framework under which the state, civil society and private sector should be collaborative, how are guidelines which will ensure a dignified life for persons with disability and support for their caregivers. The national Policy for Persons with Disability creates a wish list which includes issues such as extending rehabilitation services to rural areas, increasing trained personnel to meet needs, emphasizing education and training, increasing employment opportunities, focusing on gender equality, improving access to public services, encouraging state governments to develop a comprehensive social security policy, ensuring equal opportunities in sports, recreation and cultural activities, increasing the role of civil society organizations as service-providers to persons with disability and their families. However, the policy recognizes the need to replace the earlier emphasis on medical rehabilitation with an emphasis on social rehabilitation, but how is the critical question. Community-based rehabilitation (CBr) is seen as an effective means of rehabilitation, and the policy states that CBr will be encouraged. Like any policy statement, this one too outlines the direction that interventions for persons with disability must take. But there is no clear roadmap, or even list of priorities, on how this is to be implemented on the ground. A Ministry of Social welfare official, who did not want to be named, said no national policy ever gives a timeline, as it only presents an approach to be followed under which programmes are drawn up, normally over a five-year period. Gujarat and Jharkhand have so far only drawn up state draft policies for Public works Department (PwD). The national policy will inform the disability plan to be incorporated in the 11th Five-Year Plan, which will have a timeline, and funds for programmes can be allocated through the Finance Commission. The disabled people all over the world voiced the innumerable difficulties in India and elsewhere. Consequently, the Un convention advocated a treaty for protecting the rights of persons with disabilities all over the world. India has signed and ratified the UnCrPD on

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1 october 2007 and that places an obligation on the Government of India to ensure the adherence to its provisions and amend the various national Acts. The government has now put in public domain a set of proposed amendments to the Persons with Disabilities Act 1995 in pursuance of the goal of alignment of the Act to UnCrPD. However there are striking differences. The key principles and tenets of UnCrPD, for example, effective participation, inclusion, legal capacity, individual autonomy, liberty of movement, political participation, and participation in decision making are inconsistently reflected in writing of the amendments. All this is problematic and disquieting to say the least. The fact is that in India no single standard exists in order to evaluate disability. Instead different definitions of disability based on various criteria are introduced. Some examples such as that of Hans and Patri (2003) attempted to include the term disability not only for congenital conditions but also conditions that can be the result of an accident, disease or the inevitable natural process of ageing. They view disability as, ‘a comprehensive identity category that cuts across all others and draws its membership from several other identity groups’ (ibid.: 13).

docuMentinG disAbility: pRobleMs of ceRtificAtion while every human being requires an extensive documentation, such as voter identification card, social security card, driving licence, etc., but disabled people have to be certified for any of the requirements. notwithstanding the academic engagement with disability, what is critical is that there is a state-to-state variation in certifying disability as well as the privileges. It is difficult to conceive of a rigid and precise definition acceptable to all those providers such as the different states in India, who in order to dispense the supply of their limited services in the face of immense demand, prefer to use definitions which exclude even genuine disabled people. while the need to revamp disability assessments disability still resonates in a medicalized notion, my submission is that identities do not just indicate the degree of disability, but imply a certain way of being. what is critical is the recognition that these assessments all over the world become what Shildrick and Price (1996) call the ‘Foucauldian exercises in disciplinary power’. The feminist world can, perhaps, recall these

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issues in connection with rape cases such as that of Bhanwari Devi in rajasthan.13 Finding a consensus on the different and frequently varying definitions of disabilities, whether sophisticated or practical, therefore, is never been easy. even though definition is a necessary evil, we still need to function in a society that interrogates the given disabling condition. For instance, stipends for the students may vary from Inr 350 (USD 18) in a state like the Union Territory of Andaman and nicobar islands, to a state like Delhi where the stipend ranges from Inr 125 to Inr 500. This is valid only for disabled people who are unemployed and have permanent disability (100 per cent disability) and are certified by the Government Medical Board. To get this amount, a certificate has to be obtained from the revenue Authority Persons who are in receipt of scholarship, allowances or any other assistance from the government or local bodies will not be eligible for getting financial allowance under the scheme. The bureaucratic strictures demand detailed application for financial allowance to permanently disabled persons, thus overarching diagnosis can include and exclude. For instance, a state like Haryana mandates that the disabled with Matriculation certificates would now get Inr 1,000 (USD 22) per month as unemployment allowance irrespective of their type of disability. Similarly, persons with qualifications of graduation and post-graduation would get Inr 1,500 (USD 29), and Inr 2,000 (USD 44) respectively. This was a revision as ‘orthopedically handicapped persons with qualification of Matriculation were getting Inr 200 (USD 4.3), graduates Inr 250 and post-graduates Inr 300. Similarly, visually-handicapped persons with Matriculation were getting Inr 400, graduate Inr 500, post-graduate Inr 600, and hearing and speech handicapped were getting Inr 200 with matriculation, Inr 250 with graduate and Inr 300 with post-graduate qualifications. The fact that the Disability Act uses the broad category of people with disabilities and under its rubric puts various functional limitations without really questioning the boundary lines, which decide the difference between, normal and disabled. However, these limitations have a social and cultural meaning, which unfortunately is not reflected in these definitions. while a detailed analysis of the classification is beyond the scope of the present survey, what is noticeable is that not much attention has been paid to the implications of these anomalies in the definitions. Many commentators who did take an interest in an analytical perspective did not undertake any analysis of the different nuances of

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the definitions, which is unfortunate as definitions are instrumental in diagnosing a particular condition as belonging to a specific category. In this sense, diagnosis can have far reaching consequences in shaping the identity of those subjected to its ramifications. no other marginalized group of people in society is expected to categorize themselves or be categorised by others to the same extent as disabled people. In the disability discourse there is a lot of emphasis attached to certification. The Disability Certificate is a proof of disability and an important tool for availing the benefits/facilities/ rights that individuals are entitled to from the Central as well as State Government under various appropriate enabling legislations. In order to become eligible for obtaining the Disability Certificate, a person with disability has to fulfil the citizen ship condition (that is, should be an Indian). It is interesting that the board requires possession of medical reports explaining type of his/her disability and more important, in order to be eligible, the minimum degree of disability should be 40 per cent. Thus, the prerequisite demands that some prior assessment should have been done. The accompanying photographs should display the ‘disability part’. recently Chennai, a city in India, introduced identity cards instead of certificates to enable disabled persons to avail concessions or priority in government or other schemes throughout the country. However, the ordeal of posing for photographs showing the exact disabled part of their body for obtaining the national Identity Card is problematic. The norms forced many disabled women to opt out of the scheme as the whole experience often caused embarrassment. Further, conflict arose during the renewal of the cards. Many who appeared before a medical board, were evaluated as ‘ineligible’ based on the degree of disability and the identity cards issued by the district administration withdrawn. Thus, benefits assured to people with disability under various legislations have not often materialized. For example, people with disability are supposed to get a disability identity card issued by the state authority on the basis of the medical certificate that they produce. This card allows them to avail of various government facilities such as concessions in various modes of transport, enrolment in employment exchanges, stipend, pension etc. However, lack of coordination between medical professionals and the executive authority has resulted in a majority of disabled people in the country not having this card and therefore being deprived of the facilities that are rightfully theirs.

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However, these reactions reverberate in the lives of disabled people both in India as well as rest of the world, as they do not visualize how these individual, medical classification are helpful in comprehending their experience. once these classifications establish a label, the result is that identities become fixed categories, as they are never really re-examined. For instance, once a medical certificate is given, reassessment of the disability is never done. Moreover, there is no uniformity in the assessments as a wide discrepancy is noticed in the certificates obtained from different states or different hospitals within the same state. As mentioned earlier, the fact that there might be appreciable change in given conditions such as muscular dystrophy or polio is therefore not reflected in the definitional closures inherent in a onetime certification process. As a result, the entire process can become perplexing and frustrating. There is no indication that medical boards constituted by the states will take into consideration any environmental factors in estimating the degree of disability. For instance, how do you evaluate the condition of an individual who has been certified as having 75 per cent disability, and has gone through heart surgeries and had an artificial valve. In this sense, even medical notion of disability cannot be ratified. even medically other conditions such as a congenital heart defect is not taken into consideration. Despite the complexity of disability systems and certifications, most members of the boards receive little education and training on socio-cultural dimensions of disability. The disability certification process can at times be quite controversial because of the differences among legal, administrative, social, and cultural definitions of disability. within disability studies, many scholars argue that there is no simple way of defining disability and that one definition of disability that fits all circumstances may not be possible or desirable. Though there are efforts by the nGos to make the process of certification smooth serious problems persist. For instance, Salma Fahim, a girl from Bangalore has hearing impairment. After clearing the Indian Administrative Services exams, under the disability quota she was declared as non-disabled as the hospital appointed by the government certified that her disability is only 38 per cent. Since the disability quota can be availed only if the percentage of disability as certified by the state constituted boards is 40 per cent or more, she was rejected. Convinced that there was anomaly, she filed a case in the court and a second medical examination mandated by the court certified said her hearing level was

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55 decibels, which puts in above 40 per cent disability and hence makes her eligible for the quota. Her own medical certificate recorded her hearing level as 75 decibels. Thus, while the Ministry of Social Justice & empowerment has presumably notified procedures for the Medical Boards of District Civil hospitals for issuance, assessments and the format of Disability Certificate, different authorities never tend to give the same assessment even within these parameters; it is often found that there is no parity in the disability definition. Stone (1985) casts doctors in the role of ‘reluctant imperialists’. I do believe that in a developing country like India where resources are scarce, disability and its consequent certification is necessary to categorize people for work-based issues or needs for vulnerable individuals. However, ‘disability certification was not a task the profession wanted to assume. Most physicians believed that medical science was not capable of assessing disability, and that adoption of the certifying role would only create enormous tensions between doctors and their patients’ (ibid: 112). For instance, mental illness has been included as one of the seven disabilities in the equal opportunities act. The Act as a whole shows very little understanding of the nature of the disability and current developments in the field. It appears that the recognition is more by default rather than intent. even the activists who are cognizant of the contradictions in the disability act do not struggle for people who are considered mentally ill. The very definition of Mental Illness (MI) is more by elimination rather than explanation. For example, mental retardation is often synonymously understood as mental illness. However, as far as MI is concerned, this quantification is a mystification because such tools are not unavailable easily. So, if the caretakers of a mentally ill person want to gain benefits under the Act and get a legally approved disability certificate from a psychiatrist, the picture is not too bright. As nirmala Sriniwasan indicates, ‘By being deprived of access to a certificate of disability, the discrimination to MI is inherent in the very definition of disability envisaged by the Act’. It is believed that the Indian Psychiatry Association, under the initiative of SCArF (Schizophrenia research Foundation), is working on such a tool, that can measure 40 per cent of MI-linked disabilities but it is still at the field-testing stage. For instance, even though Shashank was assessed for disability, his results showed 35 per cent disability and not 40 per cent.14 Consequently, he is not disabled enough to be certified as such. He, therefore, will not have access to concessions

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for the disabled, such as pension and travel concessions as per the Persons with Disabilities Act 1995, though mental illness was included as a disability in the act after a long struggle. nimita Bhatt, an activist, questions the strategies for disabled people since disability is related to a compensation issue (pers. comm.). Sometimes a person has 38 per cent disability, and the criteria will disable him/her from obtaining a certificate. However, the basis for the cut-off of 40 per cent is debatable. For instance, a woman lost her hand after she was hit by a train in kerala, a state in India and lay unconscious with her leg across the rail. Another train ran over her leg. The kerala High Court awarded her a compensation of Inr 4 lakh. The matter was taken to the Supreme Court which enhanced the compensation to Inr 8 lakh. So the existence of a disability, of an agony, of a tragedy is one thing while the computation is a later thing. There is no recognition of the emotional, social as well as economic factors. The medical professionals, however, highlight the medical condition indicating that doctors are in the role of ‘reluctant imperialists’ (Stone, 1985). Though the understanding is that certification sorts people into the work-based or needs-based systems, and consequently, some allocation method needs to be developed in order to carry out this task. This was done by making disability a clinical concept and hence, assigning the role of allocation to the medical profession. Stone shows how unreliable clinical judgements are (1985: 133). Her research is fascinating. In one study, clinical teams and agency teams independently came to opposite conclusions on more than one-third of a sample of 1,500 cases in USA. In another study, comparing different state agencies using the same criteria. There was complete agreement on disposition in only 22 per cent of the cases. The limits of diagnostic procedures combined with the biases of doctors, administrators, courts, public opinion, and the uneven political pressures of applicants themselves assure very limited reliability and equity of decisions regarding disability benefits.The significance of having an identity of being disabled is contingent on whether you can prove your disability. notwithstanding the good intentions, the agenda of simplifying the issuance of disability certificates is problematic. Though there is a scope for simplifying the procedure to issue the disability certificate, and the government is working in that direction, the reality is that certification for visible disabilities such as amputations, paralysis of limbs and blindness should be given at the primary health centre level, getting disability certificates is

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a problem. However, the certification idea needs to be contextualized For instance, in a city like Delhi, perhaps the benefits can be accrued but if we were to take villages, the scene is very difficult. For instance, nGos which are working in the specific villages might be helping in the certification process. However, a smooth procedure is still to be evolved. Since many categories such as HIV and leprosy were not inclusive of the 1995 Act, the Government asked people with disabilities to share the changes required. Though the activists claim that since India has ratified the UnCPrD, it can be used as a legal instrument. The convention understands persons with disabilities as those who include longterm physical, mental, intellectual or sensory impairments, which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others (Article 1). The convention, thus, highlights the principles as follows: (a) respect for inherent dignity, individual autonomy including the freedom to make one’s own choices and independence of persons; (b) non-discrimination; (c) Full and effective participation and inclusion in society; (d) respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; (e) equality of opportunity; (f ) Accessibility; (g) equality between men and women; (h) respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

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notes 1. kathie Snow, ‘People First Language’. Available at http://www. disabilityisnatural.com/peoplefirstlanguage.htm (accessed on 13 February 2007). 2. essentialism refers to the belief that people and/or phenomenon have an underlying and unchanging ‘essence’.

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3. A Division Bench of Justice A. P. Shah and Justice S. Muralidhar in its 105-page order said ‘we declare that Section 377 of the IPC, insofar as it criminalises consensual sexual acts of adults in private, is violative of Articles 21 [right to Protection of Life and Personal Liberty], 14 [right to equality before Law] and 15 [Prohibition of Discrimination on Grounds of religion, race, Caste, Sex or Place of Birth] of the Constitution’. It further states that ‘we hold that sexual orientation is a ground analogous to sex, and that discrimination on sexual orientation is not permitted under Article 15. However, the court clarified that ‘the provisions of Section 377 will continue to govern non-consensual penile non-vaginal sex and penile non-vaginal sex involving minors’. The Bench further said that ‘this clarification will hold till, of course, Parliament chooses to amend the law to effectuate the recommendation of the Law Commission of India in its 172nd report which, we believe, removes a great deal of confusion’. 4. An illustration is given by deaf people who use the uppercase D to not define themselves as disabled. 5. Paper written and presented by Helen Meekosha to the Attorney General’s nGo Forum on Domestic Human rights, 11 March 1999, Canberra. Available at http://www.wwda.org.au/humright.html (accessed on 29 July 2009). 6. A term used by edna Mora Szymanski and Henry T. Trueba in 1994. 7. A euphemism (from the Greek words eu — well and pheme — speak) is a word or expression that is used when people want to find a polite or less direct way of talking about difficult or embarrassing topics like death or the bodily functions. As rhoda olkin writes, ‘euphemisms are used because the real terms are too powerful, evocative, painful. Therefore one meta-message of having a euphemism for disability is that it is a dirty word’ (1999: 40). 8. For this purpose, the International Classification of Impairments, Disabilities and Handicaps (ICIDH), was first published in 1980 by the world Health organization (wHo), as a manual of classification relating to the consequences of diseases. In parallel with the wider use of the ICIDH, criticisms and requests for revision have grown and led to the revision process. Since 1990, wHo has organized annual meetings. wHo Collaborating Centres for the ICIDH and the International Task Forces have been supporting the process. These centres are located in the netherlands, France, north America, Sweden for nordic Countries, and Australia. The new ICIDH (ICIDH-2) is to be adopted by the wHo General Assembly in 1999. 9. Available at http://www.disabilitykar.net/learningpublication/ whatisdisability.html (accessed on 24 november 2014).

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10. It is obvious that the definitions retain the medical connotations with a complete disregard of the socio-political and economic factors. For instance, researchers in their endeavour to engage with disability have not interrogated the understanding of disability. reddy and Sujathamalini, for instance, use what they term as the legal definition, according to which, ‘a person is said to be legally blind if he has visual acuity of 20/2000 or less in the better eye even with correction or has a field of vision so narrow that its widest diameter subtends an angular distance no greater than 20 degrees’ (2000: 94). 11. reddy and Sujathamalini use educational definition according to which ‘blind people are those individuals whose vision is so severely impaired that they must learn Braille or use aural methods such as audio tapes and records’ ( 2000: 95). 12. According to the national Act, autism means a condition of uneven skill development primarily affecting the communication and social abilities of a person, marked by repetitive and ritualistic behaviour. Cerebral palsy means a group of non-progressive condition of a person characterized by abnormal motor control posture resulting from brain insult or injuries occurring in the prenatal or infant period of development. Mental retardation means a condition of arrested or incomplete development of mind of person, which is specially characterized by sub-normality of intelligence; Multiple disabilities means a combination of two or more disabilities as defined in clause (i) of section 2 of the Persons with Disabilities (equal opportunities, Protection of rights and Full Participation) Act, 1995. 13. For a detailed analysis of this case, see Taisha Abraham (2002) ‘The Politics of Patriarchy and Sathin Bhanwari’s rape’, in Taisha Abraham (ed.), Women and the Politics of Violence, pp. 277–91. new Delhi: Shakti Books. 14. The real name is not being indicated. The person, however, is mentally ill.

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At the Periphrey: Marginalized Disabled Lives

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he present chapter deals with the realities of those who experience multiple levels of systemic exclusion from the core institutions of contemporary society, in particular education, employment, family life, parenting and the built environment, gender, caste, and class. It also emphasizes the need to not only understand these realities but also that through oppression characteristics disabled lives; the possibility of resistance is very clearly evident. Further, the disabled people experience exclusion not only in other social movements because of stigma attached to disability as well as the invisibility of their disabled lives. It is, thus, important that the disability movement does not exclude or marginalize the disabled people whose experience of disability is often exacerbated by the interactions of other forms of oppression. That the understanding of disability needs to take into account the oppressive nature of society is illustrated by focusing on the gendered nature of disability in detail. The chapter concludes by evaluating the politics of the disability movement in India. Disability both for men and women in the Indian context is not a singular marker. It has to be positioned in multiple contexts, which contain many other markers of difference and inequality such as poverty, caste and class. within India (and worldwide), generalizations have been made for understanding disability. Consequently, meta-historical narratives have been created which tend to exclude important features of disabled people’s lives and of their knowledge. within India as in the western world, people who are discriminated on the basis of disability often experience other levels of marginalization such as that of class, gender, poverty, and rural–urban divide. In this chapter I make an attempt to present these realities. Though the vantage point is India; the realities will reflect a universal character of disability.

poVeRty one wonders if there is any recognition of the fact that poverty de-individualizes, and alienates those affected from the mainstream

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of society. Marked by feelings of helplessness and hopelessness, poverty places limitations on the person, in terms of the personal and environmental resources to improve the quality of his or her life. while poverty does not respect caste, gender, rural–urban boundaries, its impact is most severe on people who live with disabilities. while the unparalleled economic growth of the 25th century is celebrated, the issues facing disabled people living in the remote villages, urban slums and tribal belts of India and I am sure in other countries too, escape notice. The problems of inequality and injustice that disabled confront appear so massive as to appear unchangeable, while more shocking categories of violence, torture, war, and sexual abuse seem manageable. As the most vulnerable and least vocal members of any society, disabled people are over-represented among the poorest people. The vast minority that make up the disabled, frequently live in dismal conditions, owing to the presence of physical and social barriers, which prevent their integration and full participation in larger community life. As a result, millions of children and adults throughout the world are segregated and virtually deprived of all their rights, which condemns them to lives of acute marginalization. The fact that there are global similarities in the exclusion faced by disabled people has been highlighted by many activists and scholars. As rachel Hurst says, ‘there is no country in the world where disabled people’s rights are not violated. The discrimination, oppression, violence and abuse faced by disabled people does not respect national boundaries, national wealth or national poverty’ (1999: p. 25). what is clear is that the trajectory of stigmatisation is experienced bt disabled people all over the world, but the global south is deprived in more ways than one. As indicated by James D. wolfensohn, former president of the world Bank ‘disabled people are also more likely than other people to live in grinding poverty. More than 1.3 billion people worldwide struggle to exist on less than 1 USD a day, and the disabled in their countries live at the bottom of the pile’ (cited in Yeo, 2005). My intent is not to create a dichotomy, but to point to the enormity of pressures that characterize the lives of those for whom disability is closely linked with many other factors, of which abject poverty is one. The questions of selfhood and identity do not come easily to those who accrue no social security and other benefits or receive such minimal amounts that leave them below subsistence levels, hardly — and not always — able to survive. It is generally accepted that the majority of disabled people live in

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developing countries yet they get less resources (Barnes &Mercer, 1996). In fact disability is a common issue both for the developing and the developed world. while the relative levels may differ, the more recent reports inform us that four out of 10 disabled children are living in poverty in the United kingdom (report by Angela Harrison, 6 october 2011).1 while there are global similarities, what is also evident is that 80 per cent of disabled people live in Asia and the Pacific, but they receive just 2 per cent of resources allocated to disabled people. As I write elsewhere (2009: 281) the invisibility of disability issues in the MDGs [and every effort for poverty reduction] therefore to me is a cause for concern as I fear that disabled people are unlikely to benefit from the global effort. no doubt disability activists have raised their voice, but in situations where they remain unheard. Besides disability is a cross-cutting issue affecting all sectors but remains unnoticed both in India as well as in the west. A vicious cycle links disability and chronic poverty: if you are poor you are more likely to be disabled, and if you are disabled you are more likely to be poor. In ecuador, 50 per cent of people with disabilities belong to the lowest 40 per cent of the income distribution. Similarly, surveys of the living conditions of people with disabilities in Malawi, namibia and Zimbabwe show that they live in households with lower than average incomes. In namibia, 56 per cent of households with a disabled member have no one employed in the formal sector, compared with 41 per cent for households with no disabled members (Allison, 2009). If research indicates that 20 per cent of the world’s poorest people are disabled, one cannot help but wonder whether one causes the other. This is true for all groups who are disabled, including people with physical and sensory impairments, people with learning difficulties and where included, people labelled as mentally ill. It is evident the relationship between poverty and disability is complex and multi-directional. Disability is not rare. It can affect 10–20 per cent of a country’s population, a percentage that is expected to grow because of poor health care and nutrition early in life, growing elderly populations and violent civil conflicts. Poverty is directly related to poorer outcomes in health, education and employment, and it increases women’s vulnerability to violence. while it might be difficult to put a dollar figure on how much poverty costs, there are many indicators of the human cost of poverty, such as increased illness, more violence against women, lower labour force

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participation and more family disintegration. For instance, many scholars such as Dalal (1998) clearly state that there exists a vicious cycle between poverty and disability. According to him, lack of civic amenities, such as water, electricity and sanitation, become a fertile source for the chief causes of ill health and impairment in the majority world. In fact in India, the prevalence of the biological reality of particularly polio and blindness is at least four times higher among those who are below the poverty line than those who are above it. with lack of immunization facilities, malnutrition, unhygienic living conditions, hazardous occupations, child labour and heightened exposure to violence the ordeal of disability seems unbearable. The fact that human made disasters2 create disability for the poor people is clearly evident. Perhaps this case would be counted as an illustration of inter-relation between poverty and disability, but in reality have been caused by the violence present in today’s society. Poverty has been analysed in innumerable ways. As Misra and Tripathi point out, ‘Though manifest in concrete ways, the nature, causes, and consequences of poverty are difficult to articulate in precise terms. Being multifaceted and relative, a one-dimensional characterisation omits the range of factors bearing on the phenomena of poverty’ (2004: 122–23). notwithstanding such understanding, the poverty line in India measures only the most basic calorie intake, recording not nutrition but only the satiation of hunger. At present, the poverty line stands at Inr 368 (USD 6.12) and Inr 559 (USD 9.30) per person per month for rural and urban areas, just about enough to buy 650 grams of food grains every day. A nutritious diet itself would cost around Inr 573 (USD 9.53) per capita per month, let alone the cost of securing other basic needs. However, such measures do not incorporate the costs of shelter, clothing, transport, fuel, health care, and education. In fact, it is quite a telling statement that these estimates go against ICMr, which prescribes 3,800 calories for an adult male doing heavy activity and 2,925 calories for an adult female carrying out heavy activity (Guruswamy and Abraham, 2009) Consequently, millions of poor unskilled wage labourers in India who do heavy manual labour every day, a stipulation of 2,100–2,400 calories in urban and rural areas is grossly insufficient. Such a state of affairs ratifies what Mabubul Huq noted: nearly one-third of the total number of absolute poor in the world live in India. what is more distressing is that while 46 per cent of India’s

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people survive in absolute poverty . . . about two thirds are ‘capability poor’ i.e. they do not receive the minimum level of education and health care necessary for functioning human capabilities (quoted in Shariff, 1999: 45).

notwithstanding the fact that official figures show a decrease in poverty,3 the fact that only the basic calorie intake is considered as critical is alarming. More so, the way India defines poverty determines the nature and content of public policy related to eliminating poverty. A discussion of the definition of poverty in India is also relevant to an international audience because the one-dollar-a-day poverty line adopted by the United nations borrows substantially from the Indian poverty line. This raises questions of how poverty is conceptualized by policy-makers, and whether there are opportunities for making poverty reduction strategies more effective through a ‘re-identification’ of the nature and causes of poverty. It is a confirmed fact that in all the low-income nations and perhaps in areas of the minority world where poverty is rampant, poorer people are more subject to poor health and impairments (Ghai, 2002). while health care was never easily available, medical tourism has made life more complicated, demanding and arduous for the poor disabled in developing countries. Consequently, people with disabilities lack jobs or access to income, or are underpaid. This results in a reduced capacity to access basic social and medical services, and rehabilitation. Thus, the poor disabled people are embroiled in a vicious downward cycle. with the loss of economic power comes a drop in social status, a lack of confidence, low self-esteem, feelings of subjection and increased defencelessness and the reality of discrimination. The desolation of bitter poverty is exacerbated by the enormous cost of non-normative (i.e., that which mainstream society considers to be abnormal) biological realities. when it is difficult to find a square meal, the increased pressure of non-normative biological realities leads to a further regression into helplessness and oppression. Poverty does not induce inner confidence so even when there are legal options, the reach is always limited. As one parent exclaimed, on being informed about the legislation, ‘what Law? If you say it is on our side, you may be right, but is there any law, which will support the poor? who is going to have that money to go to the court?’4

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Yeo and Moore (2003) depicts this scenario graphically showing the multitude of factors that produce poverty in disabled people. Figure 4.1 IMPAIRMENT

DISCRIMINATION AND DISABILITY

High risk of illness, injury and impairment Forced to accept hazardous working conditions Unhygienic, overcrowded living conditions Lack of ability to assert rights Malnutrition, poor health, physical weakness

Unsited access to education and employment Limited access to land and shelter Poor sanitation excluded from political/legal processes Limited access to health care Insufficient or unhealthy food

excluded from formal/ informal education and employment Limited social contacts Low expectations from community and of self excluded from political/ ligal processes excluded from even bunc health care Lowest priority for any limited resources e.g., food/clean water/ inheritance/land Lack of support for high costs directly associated with impairment

Fewer skills Low selfesteem Luck of ability to assert rights Poor health/ physical weakness Incomegenerating opportunities further reduced

Source: Yeo and Moore (2003).

The figure highlighted by Yeo clearly indicates that fewer skills, lower self-esteem, lack of ability to assert citizenship rights limit people’s ability to fully participate in their communities and to contribute to a productive and prosperous society. The prospects for improving this situation seem bleak in the face of environmental barriers, which are both structural and attitudinal. For the poor there is no payout for disability, in any area of life. with practically no access to education or training, they are forced to live a life marked by extreme powerlessness on every front to demand more from him or her, or what is fair and right from others, does not appear possible. As Majid Turmusani points out, The risk of falling into deeper poverty as a result of impairment is much greater for the poverty-stricken zones such as in developing countries. The birth of an impaired child, or the occurrence of impairment in the family, often places heavy demands on limited resources and pushes it deeper into poverty (2003: 29).

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As a result, disabled people are more likely to have income levels below poverty level and to have less education and no chances of demanding equitable pay for work in comparison with non-disabled people (Ghai, 2001). It is not as if no efforts are made to address the question however, what is given is always less than what is desired. while at the face of it there is inclusion of disabled in the poverty alleviation schemes, the reality is far from comforting. For instance in India, all district rural development agencies were instructed to provide 3 per cent reservation for the disabled in the major Poverty Alleviation Programmes (to be implemented by the agency Ministry of rural Development).5 However, the problem is that many disabilities have not been included within the legal definition of disability in India and are invisible completely. Therefore, there is an urgent need to increase the range of disability. neglected disabilities need to be included within poverty alleviation measures. what is clearly evident is that whenever the specific exclusion mechanisms and specific needs of persons with disabilities are not explicitly identified, the related strategies and programmes also miss their specific target. A category like ‘vulnerable groups’, though useful at certain levels of analysis, becomes an obstacle when it hides essential differences in poverty determinants of various vulnerable sub-groups and in strategies to apply. For instance, in the Swarnjayanti Gram Swarozgar Yojana (SGSY),6 the guidelines stipulate that disabled persons will account for at least 3 per cent of the total Swarozgaris (self-employed). The groups formed should ideally be disability-specific wherever possible, however, in case sufficient number of people for formation of disability-specific groups are not available, a group may comprise persons with diverse disabilities or a group may comprise both disabled and non-disabled persons below poverty line. Disabled activists argue that action to alleviate and reduce the poverty of disabled cannot begin if we do not challenge the dominant construction of disability. The medical rendering of disability, which applies both to the disabled person as well as the familial world to which she/he belongs has been an important notion in exacerbating the notion of poverty. Such a construction leads to a perception in which disability is associated with notions of welfare and charity. Thus, there is a persistent construction of disabled as economically dependent through reliance on state and charity. In developing countries like India, disability rehabilitation

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is always primarily considered as the responsibility of the family, which provides essential physical, emotional and economic support to its members with disabilities. The economic and caste status of the family and its networks also determined the quality of the well being of its members with disabilities. In this situation, the search for cure often appears the only alternative. even when cure is expensive and prolonged, the illusion of a complete recovery remains intact. Poverty does not reduce the drive for cure, since cure is perceived as a way to avoid chronic poverty for the entire family. However, this is not what many disabled people want. even in countries where there are safety nets and appropriate social security arrangements, the evidence shows that for disabled people the price of living on welfare is a systematic erosion of personal autonomy and excessive bureaucratic regulation and control (Ghai, 2011). Thus, such support systems generally perpetuate people’s poverty, keeping them at or below socially-defined poverty lines, rather than lifting them out of poverty. In the era of globalization, the emphasis on power and profit has systematically dislodged vulnerable groups from access to even basic resources such as food and livelihood (Sadgopal, 2006). Increasing privatization and a recasting of citizens as consumers result in the State losing power because the locus of control shifts from the public domain of politics to an individualized and privatized world of economic cost and benefit analysis. This privileges the paradigm of profit over humanity which then pervades all aspects of life. Access to capital and markets is controlled by relatively small elites, primarily male-centric and mostly based in rich countries. For the developing countries this leads to an ever increasing estrangement with the marginalized groups. As Gregor wolbring argues, [a]dvances in nBIC [nanotechnology, biotechnology, information technology and cognitive sciences] give life to a third, the trans humanist, model of health and disease, where health is characterized as the optimum functioning of biological systems and interpreted as the concept of feeling good about one’s abilities, functioning and body structure. Disease in this case is identified in accordance with a negative self-perception and a sub optimum functioning. Medical and technological interventions on the level of the individual are seen as remedies in this model. As it will be increasingly difficult to distinguish between nBIC ‘health products’ that lead to ‘therapies towards the norm’ and ‘therapies which will exceed a norm’, improving norms and adding new abilities to human beings will be inevitable (2004: 42).

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Thus, in a trans-humanist model, disabled people can opt to be fixed not only to a norm but also to be enhanced and improved (for example, giving bionic legs to amputees, which work better than the ‘normal’ biological legs). Such a rendering considers every human body as defective. Such an interpretation is a reflection of a medical model which locates deficiencies in the individual. even if we were to accept it as a desirable change the truth is that only a handful of disabled people will be able to afford such technologies. Consequently, poverty is likely to be used as a rationalization for erasure of the impairment with the help of these newer technologies. The only way of breaking through this vicious cycle is through an approach that conceives of both poverty and disability as human right violations. Also, while there are many explanations of poverty, each disabled person has a different reason or combination of reasons. Yet, taken together, there are some common themes that emerge. These may not all be readily fixed by policy but it is important to identify the problems. what is clearly evident is that the social and economic structure, and especially the modern welfare state, does not provide an option for some people. However, addressing disability is a significant part of reducing poverty. Bringing disabled people out of their shackles, and empowering them to thrive will do much to improve the lives of many from among the poorest of the poor around the world. while deliberating on strategies that could be advocated to introduce change in the quality of life of disabled people living with additional burdens such as poverty, serious attention has been devoted to service provision strategies like CBr. According to disability activists like Dalal (1998), such programmes, however, are highly vulnerable to local influences. within India, and I am sure in other developing countries, the notion of community is rather complex. Communities are often conflict-ridden, with traces of misgiving, mistrust, cynicism, and personal rivalries. Problems arise with the realization that cultures of dependency have been built up and initiatives to mobilize local resources are viewed with scepticism. For instance, when a community is affected by a natural hazard, the degree of disaster is determined by the community’s vulnerability to the hazard. It is true though not always accepted that some groups in society are more at risk than others. As a result, the poor and disabled are considerably more affected by natural disasters than others, as the disasters often reveal pre-existing social insecurities and vulnerabilities? In fact, the somewhat invisible but ‘real’ disaster is often

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not the natural hazard itself. It is the increased vulnerability and helplessness of the disabled who are poor and marginalized in other ways such as gender and caste. Consequently, in times of natural calamities, such as cyclones or earthquakes, often the disabled people are left behind to die or have to await the magnanimous gestures of philanthropic endeavours. The restorative work in such a milieu cannot be detached from the broader realities of socio-economic and political development. The task of creating a cohesive community is formidable and the viability of strategies such as CBr will need to evaluate in the specific cultural context. To me ‘nGo-ization’ is a new and growing form of dependency on the west, and as a tool for it to expand its hegemony. Many nGos of course do valuable work, but it’s important to consider the nGo phenomenon in a broader political context. To my mind the well-funded nGos are financed and supported by aid and development agencies, which are in turn funded by western governments, the world Bank, the Un and some multinational corporations. nGos give the impression that they are filling the void created by a withdrawing State. And they are, but in a materially insignificant way. Their real contribution is that they resolve political anger and dole out as aid or benevolence what people ought to have by right. My submission is that if the State continues to abdicate its responsibility, disabled people will always be excluded and will be a lost cause. what is important is that disabled people’s rights are addressed. The voices of the disabled have to be heard and included. Disability-specific projects, though, are not the answer, as such an approach to disability especially in developing countries will not lead us anywhere. It is only when disability is accepted as an identity category, that the first essential step towards enabling disabled people to have a dignified existence. only when their needs are identified and prioritized, change can become meaningful. Care must be taken to avoid a situation where any programme that does specifically address the needs of disabled people inadvertently perpetuates the status quo of marginalisation and unequal access to resources. Disability is not, for example, explicitly mentioned in any of the eight MDGs (Ghai, 2009). while the disabled people’s organizations and their allies have campaigned to get disability onto the development/ poverty agenda, real inclusion can only be achieved when they are not considered as deficient and lacking. It is important to realize that for disabled, it is actually the social exclusion that becomes a

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cause of poverty. we can change this reality only if we find ways of challenging the dominant perception of disability. while on one hand it might imply creating legal frameworks such as equal opportunity legislations, it has to be coupled with efforts aimed at improving economic opportunities and access to various services. Most important however is that disabled can get opportunities that enhance their political participation in society at large. Also, both disability and poverty are highly contested concepts. If development is about bringing excluded people into society, and then disabled people belong in schools, in legislatures and at work.

issues of educAtion: An indiAn scenARio In practical terms, education or welfare systems that operate on the premise of normality and the reduction of difference will always leave some people out. It is a part of their logic a rather well-accepted fact that education in today’s world is the critical variable that can teach human beings about the intricacies of life and give it a direction (robertson, 2001: 122). Indeed it would not be misnomer to say that it is education is closely related to personhood. Though education is important for every human being, disabled people however have always existed at the precincts of the society. They have been excluded socially, politically, economically and, what is more critical, educationally. In fact educational issues of disabled children have sparked debates in almost every country. According to Bengt Lindqvist former Un Special rapporteur of the Commission for Social Development on Disability: 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) (1999: 7).

education has also been one area in which the discourse of ‘special’ reigns supreme. Thus the students are routinely placed into ‘standard’ and non-standard populations. while diversity might be the rhetoric,

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the rank ordering of ability disrupts its very existence. The binary of regular/special reflects at a deeper level a paradigm of ‘normal or ‘regular’. Thus, the educational discourse in India and I suspect in other countries begins with the process of ‘othering’ the disabled student by segregating them from a more caring interactive context both with fellow students as well as teachers. To quote william rhodes: ‘the metaphor of illness (e.g., diagnosis, treatment) was codified and imported directly into school system . . .The imported medical metaphor of illness constructed differences in learning styles as ‘pathology’, ‘handicaps’ and deficiency’ (1995: 459). Thus the construction of ‘what is normal’ would decide the meaning of special. My contention is that whether it is disability or so some other form of marginalization, the significant question is how we accommodate this difference. In the specific historical context of neoliberalism, which attaches value to individualism, the disabled person is perceived as having a deficit. As Susan Peters says, it ‘the disabled students are relegated to a silent and silenced world where they become what they are perceived as being: incapable, illiterate, dysfunctional and non-productive members of school and society’ (1999: 104). The philosophy of inclusive education is based on the right of all individuals to a quality education with equal opportunity — one that develops their potential and respects their human dignity. Inclusive education means more than physical integration, so that in addition to accessible classrooms and facilities, students with disabilities must be afforded adequate instructional support systems. These supports may include flexible curriculum (for some students), adequately prepared teachers, and a welcoming school community culture that goes beyond tolerance to acceptance. Clearly therefore, children with disability in the 6–14 year age group too have this legal right.7 Specifically for the disabled, a statuary body called rehabilitation Council of India, started functioning in 1992 to recognize the need for systemic efforts in the rehabilitation of the disabled. To add substance to the existing provisos, the Persons with Disabilities Act, 1995, better known as the PwD Act, was introduced.8 The act has not become problematic and efforts have been there in 2010 to create a new law. To me the serious issue is that a committee that was working for the law has had four people resigned. The disabled people are not equal participants in the process of creating

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a new law. According to the act, the central and state governments and local authorities are legally bound to provide access to free education to all the disabled children till the age of 18 years within integrated school settings. The Act envisages a comprehensive education scheme to provide transport facilities, remove architectural barriers, supply free books, uniforms and other materials, grant scholarships, restructure curriculum and modify the examination system for the benefit of children with special needs. In 1999, recognizing some types of disability, the Government of India created a national Trust to enable and empower persons with autism, cerebral palsy, mental retardation, and multiple disabilities to live as independently and as close as possible to the community to which they belong. Apart from other objectives, it is supposed to facilitate the realization of equal opportunities, protection of rights and fullest social participation by such disabled persons. India is a signatory to the Declaration on the Full Participation and equality of People with Disabilities in the Asia Pacific region. India is also a signatory to the Biwako Millennium Framework for action towards an inclusive, barrier-free and rights-based society for persons with disability.9 It also recognizes the world Programme on Action and the Standard rules on the equalization of opportunities for Persons with Disabilities and the UneSCo Salamanca statement and Framework for Action (1994). The Salamanca statement proclaimed that every child has a fundamental right to education and children with special needs must have access to regular schools, which should accommodate them within child centred pedagogy. Historically, as early as 1968 the kothari Commission recognized the transformatory potential of education as well as the inherent hierarchies within the Indian society. However, the analysis of the education of ‘handicapped’ by kothari Commission was at best conventional and conservative. while on one hand, it spoke of social justice as well as constitutional commitment; it however understood disability as an individual problem. The report says, ‘Their [handicapped] education has to be organized not merely on humanitarian ground, but also on grounds of utility. Proper education generally enables a handicapped child to overcome largely his (or her) handicap, and makes him also a useful citizen’ (6.42). The instrumentalist underpinning of this argument is too clear. It runs counter to the understanding of kothari Commission which understood education as inalienable right of every citizen. The recommendations, thus,

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wittingly or unwittingly ratify the assumption that disability is a self-evident condition of bodily inadequacy and private misfortune. while, the report does articulate the need for the education of handicapped children as being an inseparable part of the general educational system, the primary task is to prepare him [handicapped] for adjustment to a socio-cultural environment designed to meet the needs of the normal. However it does not question the fact that in a society is characterized by hegemony of the normative, it would be a task next to impossible. It recommended both the ‘special’ and is integrated education for the ‘handicapped’.

Therefore, when the kothari Commission report mentions the necessity of setting up ‘one good institution for the education of handicapped children in each district’ it keeps the binary of regular/ special alive thereby belying the recommendation that, ‘it is essential that the education of the handicapped children should be inseparable part of the general education system (6.46).’ while the report did consider ‘the several advantages [Such as] reduction of costs and promoting mutual understanding between handicapped and nonhandicapped children, ‘it highlighted the disadvantage that ‘many handicapped children find it psychologically disturbing to be placed in an ordinary school’ (6.47) According to Heshusius: Teaching and learning are reduced to the level of rules, and instrumentality, the most subordinate level in the hierarchy of ways by which we know. Because of the required quantification and measurement, teaching and learning do not often operate at levels of what is meaningful to the child and what is worthwhile in the first place. The answer lies in a view of reality that pervades our culture and that we take for granted as if no other view could exist (1982: 7).

Though sceptical the report still recommended integration. However one cursory look at the policies that emerged later convey the scepticism of the policy-makers towards the education of the disabled, thereby painting a picture that it is absolutely impossible to include disabled children in the same class as every other child. It is worth noticing that the intent of kothari Commission was to cover only 10 per cent of the total number of handicapped children. The later policies beginning from national Policy on education 1968 recommended that, ‘educational facilities for the physically and mentally handicapped children should be expanded and attempts should be

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made to develop integrated programmes enabling the handicapped children to study in regular schools’. This report was followed by UneSCo initiatives on whose recommendations, in 1974, the then Department of Social welfare launched the Centrally Sponsored Scheme of Integrated education for the Disabled Children (IeDC). The scheme was meant for four categories of students’, that is, blind, and partially sighted children, deaf and partially hearing children, orthopaedically and neurologically handicapped children and children with multiple handicaps (Ministry of Social welfare). The implementation of this scheme was transferred to the Department of education in 1982. Under the scheme, 100 per cent financial assistance is admissible for the education of disabled children studying in common schools by way of supply of aids/equipments; allowances for books, uniforms, transport, readers in respect of blind children, escorts in respect of severely orthopaedically handicapped and employment of helpers/attendants. The scheme also provided for meeting the cost of salaries of special teachers, setting up of resource rooms, carrying out assessment of disabled children, training of special teachers, and removal of architectural barriers in schools and production of instructional material. now if the scheme was so comprehensive, why is it that education of disabled remains a neglected area? In my view, the IeDC in a sense became a prototype of the ‘scheme’/project approach which clearly stated that education of the ‘disabled’ needs to be viewed only as a ‘project’ or ‘scheme’, rather than as an responsibility of the education/school system. This scheme-based approach also negates the possibility of looking at the issue of the education of the disabled as an opportunity for undertaking systemic reforms in the formal education system. Despite constant pointers having two separate systems has perpetuated the discrimination. whereas the general educational needs come under the purview of Human resource Development, the responsibility for special education is discharged by the Ministry of Social Justice and empowerment, thereby sandwiching the disabled children that though between the two ministries (Ghai, 2001; Jha, 2006). The location of education of in the welfare department actually kept the charitable mode alive (Ghai 2006). That there was scope for dilution was indicated by the use of both ‘common school terminology’ and Special School. It might be useful to ask as to why did the scheme fail? The IeDC was extended to two more categories namely children with learning disabilities and children with severe disabilities.

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At this stage the scheme became Project Integrated education for the Disabled (PIeD). That the impact of these schemes was barely perceptible is clear from estimates which moved from one scheme to another. national education Policy (nPe), 1986, (with modifications undertaken in 1992), continued to use the language of integration by stating that the physically and mentally handicapped will be educated with the general community as equal partners, to prepare them for normal growth and to enable them to face life with courage and confidence. However, it used terms wherever it was feasible, as far as possible. It also provided room for dilution by resorting to vocational training as well as by emphasizing the special difficulties of the handicapped children. In a certain sense the state was already in a process of abdicating responsibility by encouraging voluntary effort for the education of the disabled (4.9: 14). while it did advocate that education of children with mild and moderate disabilities is given in general schools, the children under integration were still constructed as the ‘problems’, thereby making a mockery of the supposed mainstreaming. This represents what is called an add-on p/after-thought approach, in that the child is simply added to the programme. Scholars such as Ferguson would call this as being ‘in but not of the class’ (1995: 284). The disabled child is really not a functional member of the class or an active participant in its activities. Thus, it is not the system that gets transformed: rather it is left to the disabled child to be adjusted and integrated. This understanding of integration is more a token, rather than a realistic inclusion in the classroom, curriculum or the wider school activities. This approach is reflected in the educational statics given by the Ministry of Human resource Development, which rarely has any data on disabled children. A comparatively saner voice did get verbalized in the form of recommendations made by the Acharya ramamurti review Committee. Though the committee suggested good measures such as providing support to the families of disabled children, it did not take a firm stand on inclusive education. while acknowledging that the educational system for the ‘handicapped’ should be flexible, it continued to advocate a range of education provisions; special schools for those who cannot be educated in general schools, special classes in general schools, educational packages for hearing impaired children, integrated education for the disabled of the type already

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in existence etc. Thus, despite its critical outlook, and emphasis on kothari Commission’s recommendation of a common school, it fragmented education for the disabled in terms of formal, non-formal, open schools, home-based schools, vocational centres etc. Though it advocated that sustained researches should be undertaken to determine the needs of the physically handicapped and produce technological aids capable of helping in overcoming handicaps. The Indian Institute of Technology and other technological institutions in the area of higher education should be given specific responsibilities for undertaking these researches,

the focus remained very narrow one only wishes that the esteemed committee could have understood disability as a social category, thus requiring serious academic engagement and research (4.3.6). whereas the Acharya ramamurti review Committee report stressed that the sensitization of general public is important, it continued to locate the problems of the disabled in the individual impairments. The policy documents are totally oblivious to the paradigm shift in understanding of impairment and disability. In PoA 1992, the Government admitted, The evaluation of special schools and the scheme of IeDC have revealed some grey area. General education system is not yet so mobilized to a noticeable extent for the education of the handicapped either at central or state level. Inputs from different schemes like CBr, DrC, eCCe, nonformal education, adult education etc. are not being brought together for the education of the physically handicapped. The goal of Uee for this disadvantaged group would remain an unachievable dream unless concerted and urgent measures are taken (4.19: 17).

Thus, we can see that in the admission of defeat, there was also acceptance of the fact that the state would not be able to progress with respect to education of disabled. More problematic were the ‘pragmatic’ principle, which stated that ‘a child with disability who can be educated in general school should be educated in general school and not in a special school’, as they seem to be assuming that assessment practices are apolitical. The suggested upshot of this evolutionary construction, incidental or assured is that we have advanced toward a zenith of best practices in education both scientifically and morally. Thus, all that is left is the issue of finding the best match. Such a narrative, however, does not take into account the historical predicament

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of school segregation. There was, however, no re-structuring of programmes that could disrupt and disengage from the course of human stratification deeply entrenched in the education policy. It is very instructive to note that in a narrative that casts DPeP as an extremely successful project (ramachandran, 2004), many scholars such as Vandana Madan (2004) lament the absence of a meaningful discourse on disability. Most of the educational provisions for disabled children remain exclusionary, commanding a low priority as a whole. As a result, rather than equipping disabled children and young people with the opportunities to live a full and active adult life, it largely conditions them to accepting a much devalued social role and in so doing condemns them to a lifetime of dependence. In the educational discourse, inclusive education has been a buzzword. The philosophy behind inclusive schools is that all children have the right to be educated with their peers in regular classrooms in neighbourhood schools. The concept of ‘inclusive education’ advocates an intrinsic respect for difference thereby celebrating diversity rather than creating labels that delimit human potential. Thus, Hehir points out: The devaluation of disability that results in societal attitudes that uncritically assert that it is better for people to walk than roll speak than sign, read print than read Braille, spell independently than use a spell-check and hang out with non disabled students as opposed to other disabled students (2002: 7).

Yet another programme introduced by the Government of India was the Sarva Shiksha Abhiyan (SSA), which stated that The thrust of SSA will be on providing integrated and inclusive education to all children with special needs in general schools. It will also support a wide range of approaches, options and strategies . . . This includes education through open learning system and open schools, non-formal and alternative schooling, distance education and learning, special schools, wherever necessary, home-based education, itinerant teacher model, remedial teaching, part-time classes, community-based rehabilitations (CBr) and vocational education and co-operative programmes (Section 5.2).

Thus, it was not systemic reforms that SSA was looking for. Indeed, it negates inclusion by promoting parallel streams in education for

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the children with disabilities. The ratification of national Mission of the SSA by the disability sector reflects the fact that the serious educational realities have not been negotiated. within the stipulations made there are contradictions — while on one hand there is a directive that as far as possible, every child with special needs should be placed in regular schools, with needed support services. on the other hand it says that wherever necessary, special schools may be strengthened to obtain their resource support, in convergence with departments and agencies working in that area. There is absolutely no discourse on the meaning of ‘as far as possible and wherever necessary’. Similarly, though the support services that are listed are indeed impressive, with a grant of Inr 1,200 per disabled child, these stipulations are nothing more than rhetorical statements. while it is true that almost half the children in the age group of 5–14 are out of school, the fantasy that there will be space for children with disabilities, especially if a segregated schooling is being advocated for them is really farfetched (Sadgopal, 2000: 251). Two cases are presented. CASE 1 rama and Sushil were delighted when they had a baby boy. However, their happiness was short-lived as they soon came to know that their son was visually impaired. of course, like any parents of a disabled child, they ran pillar to post, in the hope of finding a cure. After reconciling to the fact that Pradeep will never be cured, they thought of his education. However, their efforts at securing an admission to their son failed miserably as various schools were not willing to let Pradeep in. Some expressed the inability of their teachers; some said that the quality of other children’s learning would go down. There were others who were willing to take him in, but only if parents were ready to pay a hefty sum every month. There were yet others, who said that parents of other ‘normal’ children would raise strong objections. Some wanted the parents to pay for the extra teacher who would be needed to attend to Pradeep’s special needs. Ultimately parents had no choice but to put Pradeep in a special school for the blind. ‘Hamari kismet ka kasoor hai, kisi se kya kehna’ (It is our fate. what can we say to others.)?

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CASE 2 I was told that my daughter would have to show excellent performance, if she was to be included in a regular school. reena had polio at the age of two and walked with the help of braces. I knew that such expectations would be very hard on my daughter, but I wanted her to be with her peer group, so that she could talk, play and mix with them. right now she is in that school, but gets very isolated as no accommodations can be made for her. I can see that there are days when she is thoroughly frustrated. Her teacher is very nasty. Sometimes, I wonder whether I did the right thing?

International Pressures The policy requisites are to be understood in the context of the international discourse articulated in various programmes and statements such as the Un world Programme of Action Concerning Disabled Persons (1983), Un Convention on the rights of the Child adopted in 1989 and ratified by over 190 countries including India, world Declaration on education For All (1990), Standard rules on equalisation of opportunities for persons with disabilities adopted in 1993 and the UneSCo Salamanca Statement and Framework for Action (1994). The world Summit for Social Development (1995) and UnDP’s Inter-regional Programme for the Disabled People (1995) echoed similar sentiments. while India has been a signatory to most of these agreements, reflection on the need to re-structure the disability has been absent from the wider educational discourse. More recently, the Un has ratified a convention that will govern the rights of disabled people. It is interesting that various policies starting from the kothari Commission indicate that a different curriculum would be needed for disabled children. It is worth noticing that despite these recognitions, no premier institute of education actually engaged with either curriculum or pedagogy issues in context of disabled children. Had it been attempted, it would have been possible to understand Peter Clough, who argues that if curriculum could have been placed at the centre of special needs inquiry, then special needs provision will necessarily move nearer to the centre of curriculum issues, no longer marginalised but the very touchstone

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and proving point of coherent, sensitive and moral curriculum planning for all (1988: 66).

The obsession with ‘special’ leads to a focus on disconnected planning such as task analyses, behaviour modification and training of specific skills. It does not engage with the ‘whole’ person. In a globalized economy such commitments will remain more an exercise in rhetoric rather than real change. This becomes even more significant when one realizes that the Government of India had re-constituted the Central Advisory Board of education (CABe) vide resolution, dated 6 July 2004. Though initially not considered within its frame of reference government did include inclusive education at the behest of Public Study group. Taking a cue from the disability movement’s slogan of ‘nothing for us without us’, the government nominated two disability activists to the Central Advisory Board of education (CABe). However, before the CABe submitted its report the HrD Minister announced an action plan, which stated. ‘It should and will be our objective to make mainstream education not just available but accessible, affordable and appropriate for students with disabilities’. However in reality no financial allocation was made. As Alur pointed out, unfortunately the Ministry HrD seems to have not been able to put their act together and put this on the back burner forgetting the commitment made by their Minister in Parliament and not worked out the financial allocation needed. no policy can be operationalised without fiscal support and it is likely that the Minister’s Statement in Parliament will remain a policy without teeth . . . just a statement of pious intent.10

The all important question that begs an answer is whether the state which is abdicating the responsibilities, is in actuality serious about such committees, as the piecemeal results in oratorical statements and not in meaningful change. It is quite telling that justification of the government’s action plan is vested in the literacy figures obtained for the disabled rather than the absolute number of disabled being educated. It notes that compared to a national literacy figure of around 65 per cent the percentage of literacy levels of the disabled population is only 49 per cent. According to the nSSo (2002) figures, of the literate disabled population, only 9 per cent completed secondary and above education. The question, which begs an answer, is whether the government wants to provide formal education or just

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literacy skills that will aid the move towards consumerism. The focus on ‘social training’, ‘general life skills’ and ‘specialist disability skills’ work against the disabled, resulting in lack of formal qualifications, higher unemployment and social isolation. A report in The Times of India (24 June 2011) indicates that out of the total of 44,000 available seats in the University of Delhi, 1,589 are reserved for the ‘physically disadvantaged’.11 In contrast to 375 such disabled students in 2009, 507 students gained admission under the reservation quota in the University of Delhi in 2010. In 2011, 684 differently-abled students passed the High School (Class XII) in Delhi as against 569 in 2010. The all-India figures also saw a substantial rise from 1,112 students in 2010 to 1,366 in 2011. Though we should celebrate, we still have to accept that only what could be the reason? Is it because none of the disabled students qualify or is it because of the structural amnesia and attitudinal conservatism that inflict our society? one can well imagine that if this is the reality when the higher education is financed by the state, what would happen if the resources were to get transferred to the private sector as suggested by the Ambani Birla report (2000). one can see the sinister control which by keeping the disabled as vulnerable will feed into the corporate world, who are reluctant to consider providing facilities12 for the disabled. In 2009, The right to education (rTe) Act was passed by the Indian parliament that promises to guarantee free and compulsory education to children aged 6–14. Although devoid of obvious segregationist terminologies, the new Act does little to encourage inclusive education. In fact, Chapter IV, Article 12(c) which ensures at least 25 per cent enrolment from ‘weaker and disadvantaged’ section, applies to unaided and ‘specified category’4 schools. The arbitrariness and artificiality of the age range (6–14 or till completion of elementary education or class VIII) is somewhat overcome for the education of disabled children since by Chapter II, Article 3(2), the right to education of a disabled child is to be governed as per the sanctions of the PwD Act 1995, and in the latter, in Chapter V, Article 26(a), free and compulsory education is ensured till the age of 18. However, it is well known that due to a variety of reasons, educational progression of a disabled student is slower than average and it is rarely the case that a disabled student is able to appear for the final school leaving examination by the age of 18. Both the rTe and the Person with Disability Acts thus fail to see through

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the continued and successful school education of a disabled child. It was only on 2 and 3 August that protest marches began when the chances of 20 million children with physical and other disabilities to get the right to education had been jeopardized as the right to education Bill, which was tabled in the Parliament (Lok Sabha) on 30 July 2009, excluded them. notwithstanding the fact that the leaders of the disability rights groups met the Human resource Development Minister. By that time it was too late as the minister was indifferent of their appeal to delay the Bill and incorporate disabled children. we do need to reflect that why the disability groups and the leaders did not make a intensive and collaborative effort to draw attention to their issues earlier, considering that bill has been in the making for the last seven years. Since it was too late all that could be done was to include the following: ‘This amendment needs to bring the words “including children with disability” into the definition of weaker and disadvantaged groups within article 2(d) of Chapter I of the rTe Act’. Isn’t this a tokenism, as the mere inclusion of the definition of children with disabilities will fulfil the aspirations of the disabled children? My apprehension is that the government would be too happy to accept the inclusion of disabled children as it allows the government to win authenticity and appreciation of an otherwise problematic bill. what troubles me as a disability activist is that there is no mention of children and specially disabled children in the 0–6 and 14–18 age groups? Psychological research is clearly cognizant of the fact that neglect during the early years can often result in irreparable damage in the full development of an evolving child. researchers attach great importance to early childhood care and education, regarding it as work of great significance for enhancing the quality of children, especially the disabled in the contexts of deprivation and malnutrition. Leaving out children in the 0–6 age group out of the ambit would lead to deterioration in children’s health, cognitive ability and performance at school. Further, the demand for just replacing school in the bill with special school legitimizes the exclusion from the education discourse. All that we get is a moral imperative which will say that schools have a duty to try to include children with disabilities in regular classes unless the nature and severity of disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved acceptably. However, unless the expert committees interrogate as to what exactly is the meaning of ‘nature’ or ‘severity’

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the state of affairs cannot change. It is mandatory that the certification process should be examined especially from the vantage point of those who are further marginalized because of caste, class and gender among various other factors. For me ‘special’ status is a little more than an insidious system of social control. Asking for special school would conveniently exclude children from the ‘normal’ schools and classrooms and ignore the Un convention. As I understand, the bill contains subtle provisions that exclude disabled children from schools, thereby confining them to either special schools or ‘home-based’ education. In effect, it is one of the main channels for disseminating the so-called able-bodied/able minded perceptions of the world and ensuring that disabled school leavers are socially immature and isolated. This isolation results in passive acceptance of social discrimination, lack of skill in facing the tasks of adulthood and ignorance about social issues of our times is often overlooked. Despite the humanitarian rhetoric, there is compelling evidence that the educational attainment of disabled children in separate school environments is inferior to that of the general population in mainstream schools. A narrower curriculum coupled with other factors such as low expectations of teachers’ results in constraining their performance. Very often the disabled children leave school with fewer academic qualifications and skills than their peers. However, a state, which is not willing to pay for education, in general, how these special schools will be maintained, remains a puzzle? The move towards inclusive schooling cannot be successful, if we do not contextualize it in the present educational system, though living with the rhetoric of valuing diversity, has not really been very successful. Diversity is not just a reality to be tolerated; accepted, and accommodated, it is reality to be treasured. whereas, the Bill has detailed the norms required of a school (teacher–pupil ratio, buildings, etc.), it is silent on the facilities needed to enable children with disabilities to attend school (such as ramps, Braille readers, etc.). Finally, a change in the norms and standards in the schedule in favour of the disabled child is mandatory. we need to demand that a provision in the Bill guaranteeing all necessary additional financial investment for integration of the disabled children in regular classrooms should be there without fail. Though Tanmoy Bhattacharya (2010) indicates that there might be a silver lining and get the act to work for inclusion. He has argued that the inclusive practices, such as (a) Accessibility, (b) Curriculum, (c) Services and Training,

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(d) Assessment and (e) Harassment, are legally workable as they fall directly or indirectly (that is, by implication) within the reach of the rTe Act. For instance, accessibility, in Article 19(2), is a noticeable part of the Schedules of norms and Standards. Although in connection with 19(2), if it is however read along with Article 21(2): The School Management Committee shall perform the following function, subsection (b): prepare and recommend a school development plan, much of the requirement of accessibility as suggested in (I) (section 4.1) can be salvaged, especially since the School Management Committee must include a proportionate representation from parents and guardians of children belonging to disadvantaged groups. Suggestions recently made by Anil Sadgopal (2009), senior educationist and a leading critic of the bill, to the disability sector, make immense sense: For instance, one assistant teacher trained in sign language is to be provided along with the regular teacher if there is even one hearing handicapped child in a class of 30 or 40 or the entire text material to be provided in Braille if there is even one visually handicapped in the class. The entire teacher education programme would have to be remodelled. The Chapter V of the PwD Act, referred to in the Proviso of Section 3(2), violates the basic spirit of inclusive education as articulated in UneSCo’s Salamanca Declaration (1994).

Further, the bill should integrate the amendment of PwD so that the national Trust Act, 1999 stipulations (autism and cerebral palsy) is integrated in the rTe bill as well. real inclusion is a profound and deeper challenge to our schooling system. It is becoming unattainable in the profit paradigm that is predominant these days. It can be possible only when every student, irrespective of the nature or degree of their marginalization, should have the right to belong to their local school and their local community, with meaningful and appropriate support, enabling them to participate and contribute to the society. However, parents of children with disabilities are not in a position to exploit the legal action which is needed in the present scenario. Simply removing barriers is not going to work unless social attitudes are changed and a disabled identity is acknowledged as a ‘normal’ part of the social order and the social psyche. Perhaps, it will help to understand the assumptions that render the education of disabled as a difficult endeavour. The policy is guided by the medical constructions that encourage cure/overcoming theories.

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A paradigmatic shift in disability and related issues came in the form of recognition that social oppression transforms ‘impairment’ into ‘disability’. As a pioneer in disability studies, oliver comments: Disability cannot be abstracted from the social world, which produces it; it does not exist outside the social [and economic] structures in which it is located and independent of meanings given to it. In other words disability is socially produced (1992: 101).

The responsibility for turning the impairment into disability lies with the economic system. Capitalism requires that greater value be placed upon individuals who make a productive contribution to the market economy. This image of not being able to contribute to production has serious implications on all walks of life including education, which is seen more in instrumentalist terms rather than genuine empowerment. Consequently, training offered to the disabled often has little or no meaning outside the special school classroom. The semi-vocational skills such as candle-making, grinding spices and baking, etc. might be useful but disabled will never be able to catch up with their peers or transfer such skills taught in nGos to the real world, because the jobs that will be given would be poorly paid. It is critical that a real chance of becoming gainfully employed should be given. A move away from construction of deficiency mandates that we provide skills that focus on full and equal citizenship rather than a bare minimum. To construct disability as a limiting condition that marks the end of human agency is do injustice to humanity. A more serious danger arises when inclusion is presented as a means of alleviating oppression and subordination in much the same way as ‘progress’ of modernization is presented within capitalism. Thus, disabled children and adults, who are defined by reference to their lack of power which is seen as a natural outcome of their generalized low position within the hegemony of normality, often have to learn to live with the benevolence of the state and the civil society. Consequently, when the state backs out, their condition becomes worse, leaving them in a position in which it is not possible to interrogate what they are subjected to. Thus, the only hope that disabled people have is to co-exist, but only in so far as it does not mean conflict potential in terms of resources. The alteration of built

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environment, translation of material into sign language and Braille, or providing computer technology for the visually impaired has severe resource implications for the state and are therefore high on conflict potential. This kind of inclusion then becomes a meaningless and often accidental by-product, albeit one that has tremendous ideological potential. It is generally accepted that progress in providing educational facilities to disabled children will be limited by two main considerations — teachers and financial resources. The latter can be understood in a context where the stipulated 6 per cent of the GDP was never really spent on education. The former problem of not finding teachers however reflects a mindset that does not visualize the role of a teacher as a keen facilitator. Teachers who have absolutely no difficulty in acknowledging oppression on the basis of class, caste or gender would still be resistant in taking a disabled child in their class. This in my belief is a political and not a resource issue. Teacher isn’t someone, who can only bring to situation theories and concepts learned in teacher training courses. It is the teacher who serves as a ‘vicarious consciousness’ (Bruner, 1985), sharing the burden of learning with the student and reducing the complexity of the task to be mastered in order to allow the learner to concentrate on the critical features. The understanding that education provides the means through which disabled people are eventually able to participate in the production of a body of knowledge that reflects their own experiences, interests, and ways of knowing does not get reflected in such discourses. As Corbett and Slee 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 (2000: 136).

23-year-old Madhubala Sharma, visually impaired since birth, has etched out her own identity as a voice and accent trainer in a multinational IT company here. Although the visually impaired community faces a lot of barriers ranging from lack of education to poor

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acceptance among employers, the desire to be different can help them to overcome all of them, said Sharma, currently working with IBM Daksh, a leading business process outsourcing (BPo) firm in Gurgaon on the outskirts of Delhi. ‘I was born visually impaired, but since my childhood it has been my desire to be different. My mindset has helped me to progress in life. I think determination and self-belief can help the millions of disabled people in our society’, said Sharma, who has trained around 175 trainees in the call centre in less than one year. ‘To equip myself, I decided to be a part of a normal school — first in Faith Academy, then in Delhi Public School, r. k. Puram, and then in Lady Sri ram College. It was difficult initially, but I could accommodate myself’. After her graduation she learned how to operate computers, mastering the Jaws software that speaks out words written in a file. Later, she joined Daksh in July 2005.

eMployMent The question of the meaning of work is probably as old as human existence. For time immemorial, it stretches across time and geographical space engaging a wide range of philosophical, sociological, psychological, and organizational themes and theories. There are times when work and job are thought to be synonymous. Perhaps, it is important to ask questions such as what is work? And why do we do it? If we had the choice, would we prefer not to work? Do some or all of us have that choice? Is work necessary for healthy self-esteem and social well-being? who should benefit from work? Can work be organized and valued to enhance workers’ fulfilment are discussed across the spectrum. The basic understanding is that work serves both materialistic and symbolic functions. Self-confidence that comes from earning a living adds to the self esteem. Although work certainly provides for basic subsistence needs and decent living conditions, this is not its only function. work is, above all, an activity through which an individual fits into the world, creates new relations, uses his/her talents, learns and grows, develops his/her identity and a sense of belonging. To work is to exert effort in order to make something, to achieve something, to produce a desired effect. For human beings, ‘to be able to do something’ means to make it visible that ‘I’, as the subject, is active in the world, that ‘I’ exist. As Fromm

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pointed it, work is an effective mean to deal with the angst of death and void (1973: 235). He once wrote: ‘The principle can be formulated thus: I am because I effect.’ Therefore, working is meaningful. As many scholars working in the field of disability note that it is exclusion from work that puts disabled people at the periphery.13 I do not contest the fact that living standards for everyone, including disabled people needs to be improved. we have been celebrating that though the world has faced the recession, the Indian economy is healthy. The question then is as to why is the share of the economic surplus that is redistributed to meet the needs of the disabled people. For disabled people, the dizzying euphoria of youth translates into a host of identity issues. Lacking control over political and economic agendas, it is hard to imagine how young disabled people can hope to fight the negative identities imposed by ‘disabling’ environments. In particular, the need to establish adult autonomy, respect and interdependency through paid employment remains largely unmet. From the vantage point of India, it is painful to know that though work issues have been part and parcel of the different political parties including the left with Marxist leaning, the issues of impairment and chronic disabilities are not linked to the critique of capitalist endeavours. A materialist interpretation of disability is seen as located in the core workings of the capitalist system of production and exchange. Many scholars such as Finkelstein (1993); oliver (1996b); Gleeson (1999) russell and Malhotra (2002) have enabled us to understand how, historically, disability emerged as both a modern social relational category and a harsh reality of life for thousands of people in the long transition from feudal to capitalist society. Disabled people still face many barriers in employment. It was only when rajiv Gandhi as Prime Minister, recognized disability as an important issue, that a legislation on Persons with Disabilities Act, 1995, was formulated. The Act provides for 3 per cent reservation in all categories of jobs in the government sector, though as early as 1959, India recognized the issues of employment and created Special employment exchange in Mumbai.14 Later in 1977 that Government of India reserved 3 per cent of vacancies in identified jobs in government and the public sector however, the reservation was only in the lower ranking jobs (C & D categories). In 1995, when the Disability Act was passed, the reservation was extended to higher-ranking jobs (A & B categories) as well. Despite the legislation, however, the world Bank report

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People with Disabilities in India: From Commitments to Outcomes released in 2007 indicates that the employment rate of disabled people has actually fallen from 42.7 per cent in 1991 to 37.6 per cent in 2002. Thus, there has been a 5 per cent drop in the employment rate of physically challenged individuals in the decade leading up to 2002. The consequent increase in the gap in employment15 between the disabled, who have a far lower employment rate than the general population, and non-disabled people, according to the report, is cause for major concern. For the overall population, the unemployment rate, that is, the share of the labour force who wants to work and seeks work but does not work, is relatively low (between 2.2 and 2.9 per cent in 2000 (Government of India, 2003b) and the employment rate of the working age population (the share of the working age population who works for pay) is high for males (83.9 per cent) and low for females (40.6 per cent) in 1999–2000 (Mitra and Sambamoorthi, 2006b). In 2002, the employment rate is only 60 per cent that of the all India working age population, with substantial variations across gender, urban/rural sectors and state (ibid.). Mitra and Sambamoorthi (2008) show that men with disabilities do not seem to have lower wages than men without disabilities. An analysis of the determinants of the probability of employment among persons with and without disabilities suggests that disability may represent a barrier to employment. only 52.3 per cent of males with disabilities work compared to 79.1 per cent for males without disabilities. our results suggest that there is an overall gap of 26.8 percentage points in employment rates among men in Tamil nadu. The results suggest that this employment gap may be associated with different returns to beneficial characteristics (for example, education) across disability status or from unfairness by employers through bigotry. The widespread negative attitudes toward the employability of disabled people expressed by employers, point to the possibility that there is a great degree of stigma rooted in society. There is also a lack of research, which can explore the dimension of effects of disability on productivity. The policy implications are that disparity in access to employment between persons with and without disabilities in almost every rural area is stark. It is critical that largely the government programs and legislation aimed at promoting employment among disabled people in India primarily reach the urban sector (Mitra and Sambamoorthi, 2006b;

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Ghai, 2010). Vocational rehabilitation centres and employment exchanges for the physically disabled are located in cities. For disabled women the policy of reservation in government employment conducted under the PwD Act since 1995 is unlikely to bridge the large employment gap, since few opportunities exist for the women with disabilities for productive work or gainful employment, they are perceived as posing a greater burden for the family. with their enforced financial dependency, they form the most vulnerable group in the world. The rights movement of disabled women requires a lot of nurturing, support, positive discrimination, equal opportunities. The priority needs to be placed on targeted interventions that aim to encourage positive attitudes towards PwDs in general and in particular toward those with mental disabilities. Though disabled people organizations already work at the community level toward changing attitudes toward disability, the need is for state to engage meaningfully. Government, private and public sectors and donors could bring more support to such micro level initiatives as well as to macro level awareness campaigns that promote positive attitudes toward PwDs. The fall in the employment rate of working age disabled people from 42.7 per cent in 1991 to 37.6 per cent in 2002 was, according to the report, almost universal across the country and also across all education levels. Though the employment projection given in the 11th Plan, in the Chapter ‘employment Perspective and Labour Policy’, 58 million job opportunities will be created in the 11th-Five Year Plan period leading to a reduction in the unemployment rate to below 5 per cent. Further the expectation is that by 2016–17, across the 11th and 12th Plan periods, the additional employment opportunities created are estimated at 116 million. The unemployment rate at the end of the 12th Plan period is projected to fall to a little over 1 per cent’. However, the cynical part in me does not feel comfortable with projections. Given the widespread inaccessibility and lack of facilities, those with career aspirations remain frustrated. Schemes for self-employment exist largely on paper, as vocational training often fails to consider local market demands, resulting in ill-equipped individuals with inadequate skills for the competitive market. In a globalized India where public–private partnerships (PPP) is the theme song, the world Bank report finds the private sector has been negligent in this regard: ‘Private sector employment incentives for hiring disabled people are few and piecemeal’. In the late 1990s, employment of people with disability among large private firms was

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only 0.3 per cent of their workforce.16 Among MnCs, the situation is far worse, with only 0.05 per cent of the workforce constituting people with disability. Javed Abidi, founder of the national Centre for the employment of Disabled People and an activist who has fought many high-profile legal battles to ensure the rights of the disabled, questions the commitment of a government that hasn’t enacted sector-specific initiatives for the disabled, even though the national policy calls for them: where is an anti-discrimination policy for employment? we don’t have it. where is the policy for access to transportation and aviation? we don’t have it. where is the access to education? we don’t have it. In jobs and schools, the disabled often simply aren’t there. what we do have is some of the greatest discrimination in this society.

However, confrontation has been largely the answer. For instance Hindustan Times (a national daily), dated 5 April 2007, reported that the Delhi High Court on wednesday restrained all colleges under the Delhi University which failed to reserve seats for disabled persons in the teaching department from making fresh appointments till further orders. ‘The university did not give explanation for the failure to implement a resolution proposing three per cent reservation for the disabled’. Consequently, a Bench comprising Justice T. S. Thakur and S. n. Agrawal stopped the university from making any selections. The order was passed on the behest of Sambhavana Trust, a registered society comprising disabled persons.17 Though the disabled people have been resisting legally, the task is not easy. The most devastating impact of the neo-liberal policies is that they restrict the revenue of the state for use for welfare purposes. It is a well-known fact that increasing competition and pressure from transnational companies to increase profits leads to a relentless search for cheap labour markets. The fact that India has become a favourite destination for outsourcing is well known. Many of the companies from the developed and the newly industrialized countries (nIC) have shifted their manufacturing and service industries to India and other developing countries. Bangalore for instance is a favourite destination for the software companies from the United States. what is disturbing is that they get this done at less than one-fifth of the costs in other countries. Globalization, thus, substantially contributes to the intensification of debt, poverty, and economic crisis in the poor countries of the world. The Structural Adjustment Programs (SAP)

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designed and imposed by the international financial institutions (IFIs) are a typical instrument used to create a favourable atmosphere for globalization, which ultimately affects the poorest groups in these countries negatively. In order to meet the mandates set by the SAP, a country spends less by cutting back government expenditures, social services, and economic investments so that resources can be placed elsewhere. More money is being spent on export orientation, which results in local economies becoming dependent on the integration with the world economy. The IFIs demand that poor economies divert substantial resources away from sectors serving domestic needs: withdraw all subsidies for poor people, privatize the state sector, deregulate the market, and decrease wages. In effect, this process opens up countries to globalization. Thus, structural adjustment programmes and import-export-led strategies of industrialization are part of a political and economic restructuring process, a prelude to globalization. Meeting the basic needs of the people becomes less important. State-run factories or enterprises are often privatized to suit the needs of foreign investors. Free trade and liberalization lead to unfair competition and local producers, like farmers, have to suffer the consequences. The profit paradigm becomes more critical for disabled as the difficult interaction between the disabled individual’s capacity to produce (labour) and the means of production, is rooted in the shackles imposed by the capitalist system. what needs to be articulated and understood is that the responsibility for turning the impairment into disability lies with the economic system. Goodley says, ‘To contend that disablism is a matter of cultural production, identity formation, bodily deficiency ignores the deeply divisive nature of capitalist economies that render disabled people open to exploitation’ (2011: 62). Although work is the central tenet of any capitalist system, the way it has evolved will clarify its effect on the disabled. It isn’t as if the disabled had a carefree life before capitalism; they, however, did have spaces in family-based work as well as local units that would absorb them in a dignified way. However, a shift came with capitalism as both the social organization and concept of human labour changed with increasing assembly lines as well as precise mechanization of factory work; the disabled workers were not seen as having any value (Stewart and russell, 2001). They were excluded because they were not in a position to keep pace with the factory-based system of production. Consequently, disabled people

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experience levels of economic and social deprivation rarely encountered by other sections of the population. Fears of increased costs, inflexibility in considering necessary accommodations, and outright prejudice, all contribute to an artificially small job market for people with disabilities. For example, the same multinationals who would abide by the accessibility regulations in the US or the Uk do not stipulate that accessibility codes be applied, although this would require little or no additional cost. without infrastructure standards and the enforcement of those standards, inaccessible environments are re-created or maintained. The kind of assistance provided (if any) does not guarantee a sustaining wage, making poverty inevitability. As early as 1995, kisanji says, The question still remains: how can disabled people have equal opportunities in developing countries in the face of rapid cultural change, worldwide recession, armed conflict, continued imbalance of trade, structural adjustment and the ongoing rapid technological advances of the modern world? (ibid.: 199).

Thus, querying in 1995 has not changed its colour, as findings of projects such as human genome threaten the very existence of the disabled. what is worse is that such assumptions not only put disabled people at risk, they also devalue their status as human beings while they are alive. In a country like India, where genetic screening tests, such as amniocentesis become sex determination tests, leading to a fall in the gender ratio, the fate of disabled children, especially girls, does not require much imagination. The experience of humiliation for disabled people is instrumental in comprehending the difficult interaction between the disabled individual’s capacity to produce (labour) and the means of production, rooted in the shackles imposed by a capitalist system (Ghai, 2009: 291). As the state withdraws from the service sector, access to basic necessities such as education, health, employment, and food and water security has become increasingly difficult for vulnerable populations (Bhaduri, 2008). It is true that several corporate have taken social responsibilities as part of the business ventures. Since corporate social responsibility (CSr) is premised on corporate compliance against a background where stakeholders have changed their awareness and are now believing that enterprises have to take social and ethical actions to sustainably and stably grow and develop. Tata Consultancy Services (TCS)

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conducted the research study ‘employability of Differently-abled Persons in Industries’, in association with the Confederation of Indian Industries (CII). The report indicates that a majority of the companies do not have a proper CSr policy. The study further indicated that employability skills of the disabled are not in tune with the skill required by large corporate houses, he added. within India largely there are unequal numbers of disabled people in less skilled, lower paid jobs with fewer promotion prospects, and an over-representation in specific occupations or congregated in sheltered workshops. It is very difficult to find disabled people represented well in the professions and management jobs, where there are higher earnings, job security and opportunities for promotion. Though the Government has simplified the scheme of reservation for persons with disabilities during last two years as a result of which visually handicapped and hearing handicapped persons have been able to get entry into the most prestigious services like the IAS. However, it has not been an easy endeavour. Despite advocacy efforts the disabled face an uphill task.18 I am sure that people have resisted against this oppression. A disabled candidate’s struggle began in 1995 when he failed in his first attempt to clear the preliminary examination of IAS. As a hearing-impaired candidate, he cleared the exam three times — 2005, 2006 and 2009. In 2006, he was told he could not be allotted the IAS as only the partially deaf were eligible, not fully deaf persons like him. So, he was allotted the Post and Telegraph Accounts and Finance Service. However, once again he had to accept the normative ‘power’, as the candidate had to go through a surgical cochlear implant, costing Inr 7.5 lakh, which enabled him to hear partially. He appeared for the IAS again in 2009 and cleared it, scoring the highest in the hearing-impaired category. Yet, he faced several more hurdles, as the government put technical hurdles questioning his level of disability. It is sad that disabled people need to prove the necessity for work. As advocates we need to reaffirm all the time that disabled people are capable of being producers. For instance Chaudhary, who hails from Dausa district in rajasthan says, ‘we wanted to show that we can also work, just like everyone else can’ (pers. comm.). Though there are countless groups, such as Viklang Manch (a nGo), to demand that disabled people be treated equally for eligibility under various schemes of the states in India, along with the national rural employment Guarantee Act

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(nreGA), the country’s flagship welfare programme, which promises 100 days of employment a year to poor rural households is neutral on giving work to people with disabilities, what is critical is that clarity on a disabled person’s eligibility for what type of work is not specified.19 works such as arranging for drinking water, computer training and teaching can be undertaken by disabled people, he said. Though the union government in 2008 circulated an order listing jobs that can be sanctioned for disabled people, only one state, Madhya Pradesh, has notified it.20 The politics of the relationships between the central government and the states is fraught with tension, as the states are the implementing agencies. Also there are concerns about identification of jobs as only three disability categories, that is, locomotor, visual and hearing, have 1 per cent reservation each. Thus even the disability categories of the 1995 Act are not all included in the reservation policy, let alone a range of other disabilities. The UnCrPD, which has been ratified by India, clearly mandates to ‘prohibit discrimination in workplace’ and ‘ensure reasonable accommodation’. Disability sector has been demanding fulfilment of 3 per cent quota for disabled people for a long time. The 11th-Five Year Plan states quite clearly, ‘The backlog of vacancies for persons with disability continues to be large, both at the Centre and in the States. This backlog should be cleared in a time bound manner and in a campaign mode’. The Delhi High Court has also ruled ‘the Centre to conduct a “special recruitment drive” to fill the backlog in posts reserved for this category by December 2010’. My submission is that disability advocacy needs to move from concessional language to the discourse of rights. Though political leaders are alarmed at the growing population of disabled in India, however very few employment opportunities are there. Consequently, disabled people are on the margins of the labour market as the disabled people encounter a variety of economic, political and social deprivations. This form of distributive injustice is widely experienced by disabled people throughout the ‘developed’ world (Marin et al., 2004). even in the west, scholars writing from a disability studies perspective indicate that though there are ideas of independent living the argument is for a reconfiguration of the meaning of work in order to remove the stigma associated with unpaid labour (Barnes and Mercer, 2005). while employment can offer material security

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and social status, successful employment for many disabled people cannot occur without an effective challenge to the contextual constraints of unfriendly workplaces and labour processes. For example, a resource centre ‘Abilities’ motivate the disabled to create self-employment scheme under Vikasa, which is a communitybased rehabilitation programme being implemented in over 140 villages in rural outreaches of Bangalore district. entitled as ‘sheep to sheep’, the disabled are metaphorically supported in sheep rearing, but have to pass on the first lamb to a disabled person in the neighbourhood to retain the spirit of this scheme. while these gestures are inspirational and need to be applauded, the state’s responsibility cannot be abdicated. Corporate India has largely ignored the statutory reservation for disabled persons, violating the PwD Act 1995 by employing only a handful of disabled employees. These benefits include placing disabled people in a position to exercise all the responsibilities of citizenship, acknowledging that capable individuals have a ‘right’ to work, permitting the disabled to achieve dignity through labour and productivity, and realizing the value of a diverse society. The value of these gains, as well as what any of them is worth to individual employers, is not necessarily negligible even if it is unclear (Stein, 2000: 327). The government’s attitude is also reflected in the miniscule percentage of disabled employees even in public sector organizations that have a larger workforce and for whom it is mandatory to have 3 per cent reservation for disabled persons. Though the Act has 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. Though the other central services, such as the Indian Police Service, Indian Foreign Service and Indian Forest Service, have also understood the implications of the PwD Act, and reservation of 3 per cent in these services. All the reservations for jobs and seats in educational institutions are for the backward (SC/ST) category, because they serve as a potential vote bank. Although there are reservations for disabled people no ministry seems to take them. Litigations such as the Sambhavana can counter with the ablest society. However, to protect their right to employment of the

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disabled, new employment opportunities should be identified and created in formal and non-formal sectors, including the cooperatives and self-employment schemes. Appropriate training and low-interest loans should be provided to persons with disabilities to start and manage their own businesses. Sufficient attention must be paid to the assessment and training to those born with disabilities as well as to those who have recently acquired a disability and thereafter providing suitable job opportunities to them. Conveniently-located production centres should be set up to provide economically active jobs disabled people, equivalent to their qualifications. Advertisements offering job opportunities must be worded with special care to include disabled candidates and employers should make sure that there is no discrimination against them at workplace. It isn’t as if there aren’t concerned professionals who want to locate a right person for the right job. They are well-intentioned in finding qualified disabled people but their despair is that most Indian offices and factories are simply not disabled-friendly. Theoretically, hiring disabled people is a goodwill gesture. However, spending thought and money to make the built environment accessible is mindboggling. A fellow disabled who uses elbow-crutches and works as a software developer at IBM India said: when I first came to the IBM building, I was so relieved to find that I don’t need to climb a single step to get to the fifth floor. There were ramps all over. All the buildings are very disabled-friendly (Jaiswal 2006).

It is interesting that usually getting fire safety inspectors and food inspectors are known in India but accessibility inspectors, who would make sure that basic accessibility standards are met in every work place, are not there in the state’s understanding. Multinationals probably have the best of policies and accessibility norms for disabled employees and they are well implemented abroad. But somehow when it comes to India, one feels that it is not all that satisfactorily done. It is true that such issues take more time to evolve. But ultimately, accessibility issues are addressed and it takes the shape of a concrete policy, which can have far-reaching implications. with screen readers and speech synthesizers, the visually- or motorimpaired can be as productive as anyone else. However, despite the positive sentiments, most organizations and offices still do not have even the basic accessibility standards in place. The CII has come

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out with a Corporate Code on Disability for voluntary adoption by companies in order to develop a disability policy, which would in turn help them be recognized for their social responsibility and commitment.21 Hiranandani (2010) cites Friedner’s (2009) work in which a data entry and processing company in Bangalore employs only disabled people since, according to the company’s chief operating officer, turnover of ‘normal’ people is persistent. However, the company consistently pays less than minimum wages to its disabled workers. The irony is that this corporate was awarded and initiative of disabled people is used as a unique advertising point. employment once again stays at the margin.

issues of GendeR when I wrote (Dis)Embodied Form (2003), a painful and disillusioning realization was the recognition that disabled women occupy a multifarious and marginalized position in Indian society, based on their disability and also on socio-cultural identities that separate them into categories constructed according to such properties as caste, class and residential position. To some extent, my attempt was rewarding to initiate an inclusive discourse that would try to make universal sisterhood a distinct possibility. However, disabled women who can have plural identity markers make their daily experience perplexing and difficult. For women as well as disabled women, the rise of neoliberal states has deepened already severe oppression and exclusion on the basis of bodily ability and gender (Chouinard, 2005). within India the fact that there might be a gender dimension to disability has only recently been realized (Ghai, 2003; Hans & Patri, 2003). Das and Agnihotri (1999) indicate that the incidence of disability is intersected (or influenced) by gender. The extrapolation of the available statistics, they have indicated that disabled women are marginalized much more than the disabled men. Disability legislation also adopts a gendered approach, with the result that out of 28 chapters outlining various issues, not a single one addresses the problems of disabled women. while the Indian cultural reality has never been favourable to the birth of daughters (as is clear by the consistent fall in the gender ratio) the onset of disability, in daughter is a fate worse than death. while women are fighting hard for equal rights in a patriarchal order, disabled women are rarely recognized

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as persons. The society that accepts the able-bodied norm subjects the disabled girls and women to the most inhumane treatment possible. This holds not only for those whose disability is very severe, but also for anyone who is different from the ideal form. Thus, right from the childhood, disability imposes a subordinate status on them and increases the likelihood that their rights will be ignored. women with disabilities also face discrimination at the hand of the feminist world, which as a frame to understand women’s lives and position in society has not benefited disabled women the intermingling of disablement and gender marks the reality of a woman with disability in India. opportunities for improving the quality of life of a disabled girl are virtually non-existent. Already living a life of subordination without education and employment, women can do without the burden of disability. As a mother lamented, ‘wasn’t it enough that we have a hand-to-mouth existence? why did God have to add to punish us further by giving a langri (crippled) daughter’ (Ghai 2001: 31). In a culture where being a daughter is considered a curse, being a disabled daughter is a fate worse than death for she has to contend with her role as a daughter, when a son was desired, and with her disability. The desire for sons has to be understood in the context of the ritual value of sons as well as the social and economic burden in bringing up daughters (Johri, 1999: 78). The construction of daughter as a burden is rooted in the cultural milieu that looks at daughters as parai (other). As Johri elaborates, ‘one of the religious duties of the father is kanyadan, the unreciprocated gifting of the virgin to the husband and the family. Giving dowry becomes a part of this ritual’. However, the implicit understanding in this practice however is that whatever you are giving will be perfect. The disabled girl, when offered to a prospective son-in-law, has to be compensated accordingly. If compensation is not possible then compromises like being married to a widower have to be made. Disability in a son, on the other hand, though traumatic, will still be more acceptable as he does not have to be given away. In Chapter Two, I have spoken about the negative rendering of a disabled woman (Doniger and Smith, 1991: 205–6). Consequently, a culture in which arranged marriages is the rule, the disabled woman is placed in a difficult position. while there is a possibility of resistance (however difficult) to this cultural arrangement for the ‘normal’ women, for disabled

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girls it is an uphill task. Some disabled girls in the rich or middle class might be able to negotiate the difficulties inherent in the arranged marriages, albeit with a great deal of compromising. Disabled sons retain the possibility of marriage, as they are not gifts but the receivers of gifts. Disabled as well as non-disabled men seek ‘normal’ women as wives and, therefore, participate in the devaluing of people because of disability. The preference for a son in the larger Hindu community in India, in keeping with its religious philosophy, has now been coupled with technology that can provide a test to screen and determine the sex of an unborn foetus. The 2011 Census indicated a continuing preference for male children over female children. The latest child sex ratio is 914 females against 1,000 males — the lowest since Independence (PTI, 31 March 2011). In a society where there is widespread female abortion, aborting imperfect children will not cause any stir or rancour. while there is an on-going discussion of the ethical contradictions that prenatal sex testing poses for feminists, prenatal testing to identify and abort children at risk for disabilities does not get addressed (cited in Ghai, 2003: 69). For disabled women themselves, these issues become secondary because cultural stereotyping denies them the role of motherhood. Disabled women are, however, denied the possibility of this fulfilment, as marriage and procreation are both difficult achievements in a socially restrictive environment. The denial of women’s ‘traditional roles’ to disabled women creates what Fine and Asch (1988) term ‘hopelessness’, a social invisibility and cancellation of femininity that can force the disabled women to pursue (despite all helplessness), the female identity valorized by their given culture but denied to them because of their disability. A great deal of thoughtful work by Indian feminists analyses the impact of the evaluative male gaze. However, the essential differences between being sexual objects and objects of the ‘stare’ have not been understood. If the male gaze makes normal women feel like passive objects, the stare turns the disabled object into a grotesque sight. Disabled women contend not only with how men look at women but also with how an entire society stares at disabled people, stripping them of any semblance of resistance. Davies cites a scenario described by Anne Finger’s interpretation of a imagined meeting between rosa Luxemburg and Antonio Gramsci each of

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whom are disabled, with rosa being given the temporary power of the abled gaze: we can measure startled reaction as she glimpses him, the ‘misshapen dwarf’ limping towards her in a second hand black suit so worn that the cuffs are frayed and the fabric is turning green with age, her eye immediately drawn to this disrupting in the visual field; the unconscious flinch, the retaliating that she is staring at him and to the rapid turning away of the head. And then the moment after, the consciousness that the quick aversion of the gaze was as much of insult as the stare, so that she turns her head back but tries to make her focus general, not a sharp gaze Comrade rosa (Davies 1995: 128).

Davis points out the irony in that rosa has walked with a limp her entire life and yet she found this abnormal. This brings a throbbing pain in me when I realize that to remove stigma is next to impossible. when books say, am I not a woman, I get confused if I could say am not I a disabled? Few years back I went to see the marble sculpture of Alison in Trafalgar Square. My first reaction was that it was a wonderful example found in the life of the disabled artist Alison Lapper. Apparently, the artist Marc Quinn wanted to introduce some femininity. The adjacent nelson’s Column seemed to be an epitome of a phallic monument. A significant statement, which was entitled ‘Alison Lapper Pregnant’ could be appreciated. nelson who was ‘crippled and blind’ is thought of as a ‘war hero’; his disability doesn’t enclose him and pity is not aroused. A review told me that the able-bodied artist, Marc Quinn, said: ‘The sculpture makes the ultimate statement about disability — that it can be as beautiful and valid a form of being as any other’. My contention is that indeed ‘disability’ as a social category is problematic, though beautiful but extremely complex. The statue in not only personified courage and bravery but it also signifies sexuality and maternity. I discovered that she is an artist in her own right, who has created an inspirational series of photographic self-portraits with her child. The statue, in a way, is a portrait of resistance. whilst this sculpture seems to transgress normative ideals, yet it reminded me of the ‘damaged’ part. In a way the representation of a disabled body is opposition to ideas of beauty. In a society in India, any aberration from a normally accepted archetype is seen as a marked deviation, the impaired body becomes a symbol of imperfection. ‘The ramifications of such historical

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rendering are to be found in the north Indian Punjabi culture, where, although girls are allowed to interact with their male cousins, they are not allowed to sleep in the same room. Disabled girls, on the other hand, are under no such prohibitions’ (Ghai, 2003: 72). This reflects what Harlan Hahn calls ‘asexual objectification’ and also evidences the disregard of the dangers of sexual violation to which disabled girls are exposed (Thomson, 1997: 25). The assumption that sexuality and disability are mutually exclusive also denies that people with deviant bodies experience sexual desires and refuses them recognition as sexually typical despite their differences. Indian feminist scholarship has looked at embodiment along the axes of caste, class and historical phases, such as the impact of colonization; however, the impaired body has not been considered as having analytical consequence. As niranjana points out: Focus on the body has been a symbolic one where the body is perceived as sign or code important to the extent that it is speaking about a social reality other than itself. Suggestive as it may be to speak of the body as representing encoded social meanings, as an image of society or even a metaphor for society, the question remains whether these perspectives can acknowledge the materiality of bodies, not merely as they are formed/ represented in a culture, but how they constitute the lived reality of persons (1997: 106).

Though this analysis takes up issues of cultural spaces and the female body, there is no mention of the disabled body. This omission reflects a historical practice that continues to render the disabled invisible in a manner very similar to the invisibility experienced by blacks in a white racist society. It is ironic that feminists engaged with the issue of difference united in their attempts to empower the powerless, and resolved to transform social inequalities, have not picked up on the issues concerning the meaning of impairment for disabled women. while the disability movement’s failure to acknowledge disabled women can be fathomed as reflecting the patriarchal character of a society it accepts and aims to be included in at least within India, its disregard by the feminist movement, which claims objectivity through its theoretical deconstruction of oppressive social suppositions, is less understandable. what is especially anguishing is that Indian feminist thought fails to recognize that the problematization of women’s issues applies equally to disabled women’s issues. In principle, some disabled

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women might have benefited from the activities of certain women’s groups, but no documentation exists of specific instances. on the other hand, ample evidence abounds that disabled women are the victims of domestic violence and sexual violation. However, when the national Indian media gave widespread coverage to a story about a woman with cerebral palsy being abused by her father, women’s groups gave no more than a perfunctory response. Further, Indian feminist scholars have not attempted to develop theoretical responses appropriate to the situation of disabled women. Historically, the only instance that evoked a reaction from Indian women’s groups was when 14 mentally-challenged girls were compelled to undergo hysterectomies in the Sassoon General Hospital in Pune (a city in the state of Maharashtra) on 5 February 1994. The instance was reported in major newspapers on 24 February. The intervention from women’s groups came after these press reports. on following the case, I found that the institution was catering to a large rural community that left developmentally disabled girls under institutional care. The girls, however, were not allowed to wear pajamas with drawstrings as well as sanitary napkins with belts, as it was claimed that they might use these strings to commit suicide. The records regarding the stay have not been kept very carefully, so it is difficult to provide the exact details. what is important is that it was the absence of protective gear, such as pajamas, undergarments and sanitary napkins, made the management of the bodily functions, such as menstruation, difficult. To deal with the problem of menstrual hygiene, the hospital decided to go ahead with hysterectomies. notwithstanding this paternalistic deprivation of women’s necessities, boys in the same institution were issued pajamas complete with drawstrings that too could easily be turned into a noose than any sanitary napkin could be. However, in their case the danger of suicide was apparently not perceived. Sadly this instance was not translated into a broader effort to open a dialogue about the enforced sterilization of developmentally disabled women. This failure indicates that Indian feminists still do not see women with disabilities as an important and enduring constituency. Though there are efforts which sought a ban on forced hysterectomy for mentally and physically challenged girls by the nCw and the CBr network, a non-governmental organization (The Hindu, 2005). They have demanded a special charter for protecting the rights of persons with

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disability with separate provision for protection of rights of women with disability. while there is a strong emphasis on mainstreaming women’s concerns for self-development in the national policy documents on empowerment of women, the paradox of a hierarchy within a hierarchy is evident because discussions about certain groups of women considered lower class and caste, tribal, and minority, continue to be couched in ‘welfare’ terms. This reflects the skewed attitude of mainstream feminists, who, while sensitively exploring distress as a major component of a woman’s life experience, conveniently leave disabled women out of their focus. There have been changes in the last decade as issues of disabled women have been included in the women’s movements. There have been some gains in participation as well as inclusion in the decisionmaking of some organisations. Initially the disabled women were speaking mainly to the converted, but being in a conference did provide the opportunity to listen to other disabled women talk about their lives and to understand that there are feminists with disabilities who were ready to work together to bring about change in the lives of their fraternity. The 2008 women’s Studies conference went a step further and discussed disability issues in a plenary, but still there were only two women delegates who were disabled among almost 500 women. Thus, while the feminists’ fight against oppression in India is for recognizing disability issues, it is not yet fully cognisant of them. Although the conference was ‘accessible’, access was defined in a limited way. The toilets were either too far away or not accessible. In another conference, in Mumbai, where disabled women were present in large numbers, many workshops were held in locations that were unreachable, with no elevator access. Inclusion surely means more than just making nominal arrangements for those of us living on the periphery. For the first time, the mainstream Journal of Gender Studies bought out a special issue on ‘Disability, Gender and Society’ (2008). Though a lot more work needs to be done, this is a welcome starting point. while there are sensitive women who have heard the voices of their disabled relatives, colleagues and friends, within the broader feminist discourse and practice a certain tokenism prevails. To really hear disabled women’s voices, the women’s movement has to acknowledge the social, economic, communication as well as

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architectural barriers that prevent disabled women from sharing their stories and engaging in a public discourse. It’s time that the women’s movement interrogates able-ism. This is seen in women’s services that are not physically accessible or that assume that accessibility is just a wheelchair ramp and nothing more. For example, for women who are hearing impaired or visually impaired, accessibility may mean using sign language or Braille format. Able-ism is also reflected in the kind of language that non-disabled feminists use when referring to feminists with disabilities, as for example, ‘you are so brave’ or ‘it’s really wonderful that you were able to get out and come to this conference. However, a lot is needed as women studies departments have not included issues of disability. It could be argued that I am weaving a where there would be a possibility of real dialogue between the by feminists and women’s groups and disabled women. It isn’t that I am ignoring the possibil-ities of resistance, which in the face of no recognition can only be attributed to a sheer will to survive. Taking this into consideration, I could argue that women with disabilities have formed support groups and are in the process of challenging dominant constructions of disabilities. Also, the Indian Association of women Studies were granted funds, which helped in creating a module on gender and disability. It also went to University Grants Commission and in a way the module was accepted. However, women studies departments will take a long time to address disability. Also, owing to the absence of discussion among disabled women themselves, no group exists to collectively pursue the concerns of disabled women and, thus, to influence both the disability movement and the women’s movement. right now the voices of disabled women are restricted to academic settings, where a double oppression hypothesis is expounded. This hypothesis takes the standpoint that disabled women experience a double disadvantage, as they fare worse than either disabled men or nondisabled women socio economically, psychologically and politically. Disability compounds their already marginal status as women. Many feminist thinkers in the field of disability have objected to this ‘double disadvantage’ approach since its literature does not empower disabled women. Says Morris, ‘I always feel uncomfortable reading about our lives and concerns when they are presented in these terms’. Lonsdale writes, For women the status of ‘disabled’ compounds their status of being female to create a unique kind of oppression, I feel burdened by the disadvantage,

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I feel a victim . . . Such writings do not empower me. we have to find a way of making our experiences visible, sharing them with each other, and with non-disabled people, in a way that — while drawing attention to the difficulties in our lives — does not undermine our wish to assert our self worth (1996: 2).

while Morris is absolutely right in her stance, the problem is that even the double disadvantage hypothesis fails to produce concrete action as the outcome of the feminist discourse, and practice does not move beyond tokenism and rhetoric. The struggle in India is very similar to the battle that feminism, which was cognizant of differences between women, engaged with as a political movement. It had to fight continuously for mainstream feminism to acknowledge the dangers inherent in adopting the universal category of ‘woman’ — and by default the exclusions of those living on the periphery and margins. Says elizabeth weed: For those outside mainstream feminism, women’s experience has never ceased to be problematic. The common ground of sisterhood long held as white feminism’s ideal was always a more utopian than representative slogan. worse, it was coercive in its unacknowledged universalism, its unrecognized exclusions (1989: 24).

Indian disabled women experienced this exclusion when feminist theory and practice in India continued to ignore their experiential realities of discrimination, ignorance and neglect. The feminists reinforced the construction of disabled women as being outside the hegemony of normalcy. Consequently, the much-needed political action has not been forthcoming. The resistance offered by disabled women has only led to a superficial acknowledgement of differences, with an implicit assumption that the core issue is gender. The perceived need is, therefore, to raise the gender issues presumably adequately enough to address all women’s lives regardless of their backgrounds and differences. At least this recognition is responsible for the emergence of a discourse about difference; but I cannot ignore the reality that this discourse has not been able to effect much, if any, change — either in increasing acceptance of disabled women’s concerns in social policy or in enhancing the quality of their lives. According to nivedita Menon (2000), a more fundamental, reason for the total absence of disability as an issue in the Indian women’s movement — and the comparative lateness of its emergence

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in western women’s movements — could be that feminists all over the world have usually assumed ‘women’ to be a category that is self-evident. In one sense this has been the internal colonization. That is, there is an unsupported assumption that all women, regardless of their differences from one another, have obvious shared concerns. This abstraction of ‘women’ emerged from a feminist positing of ‘difference’ as a challenge to the abstract category of ‘citizenship’ which assumed masculinity as the norm. Up to the late 1970s, ‘sisterhood is global’ seemed an unquestionable feminist truth. The challenges from women of colour and other stigmatized and marginalized groups of women showed the category of ‘women’ to be another abstraction, which in turn assumed the white, middle-class, heterosexual woman (without disability) to be the norm. In India, this kind of challenge has come from feminists of minority communities. The charge is that the women’s movement has assumed the Hindu upper caste woman to be the norm, and this critique has emerged most clearly in the debates over the Uniform Civil Code (UCC). The debates were regarding the demand for a common set of personal laws that would apply to all religious communities in India. The opposition came from the belief that the emerging uniformity would essentially represent the voices of majority (which in this case was the Hindu women), thereby marginalizing the women from minority groups. Menon, a vociferous activist in the women’s movement and a political scientist by profession, feels that the invisibility of disability within feminism occurs because of mechanisms similar to those that have made women in general invisible in the larger society. But as a feminist who felt disturbed by the neglect of disability issues, she thinks that the movement has the potential to grow and change. Another reason for the failure to represent women with disabilities is that within the Indian women’s movement there are far too many issues and far too few resources. Consequently, action has been oriented to the dramatic patterns that resonate in the lives of the majority of women who are able and normal, rather than to the minority who fail to exercise voice or agency. notwithstanding the current reality of the exclusion of disabled women within the Indian women’s movement, I would argue that simply deciding to include them is insufficient. The problem cannot be resolved so easily by merely adding on disabled women as another category to the list of matters or kinds of issues requiring attention. offering a feminist account of disabled girls is problematic because it requires including

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them in the discourse. However, writing a subject (for example, disabled women) into the on-going discourse necessitates a certain exercise of power to construct that subject in some form, to give her shape, and to breathe life into her. This cannot be accomplished without knowing how she might construct herself. This process thus requires certain reflexivity. To explore the possibilities authentically and adequately requires that the process have a dialogical character. It is vital that both feminist discourse and practice engage in a concerted dialogue with the disabled women and the disability movement, so that a more inclusive theory as well as practice can emerge. To quote Mairian Corker: It is often argued that theories are too complex for ex post facto explanation rather than for use by disabled people, they may lead to confusion and the paralysis of analysis. This is always a danger, if complexity of life is overemphasized, and if the need to understand fully is placed ahead of the need to act more effectively, because disabled people can be turned into interested spectators, rather than proactive participants of a strong social movement. Theories which reduce or simplify disabled people’s experience, particularly those which fail to conceptualize a dialogic relationship between disability and impairment can have the same effect (1999: 639).

The solution of these problems might come by following the example of Leonard (1997) in creating a paradigm of communication rooted in discursive strategies rather than structure. Failure to create these spaces even unintentionally does not alleviate the asymmetry of power relations. Feminist discourse has developed without disabled women taking a hand in shaping it. what now can be done about feminists’ inattention to disabled girls and women, and how would feminist discursive attention look and read if, initially, they had been involved in its development? Do we need a different kind of feminist theory to account for disabled women? As rosemarie Garland Thomson observes, feminist theory can challenge the persistent assumption that disability is a self-evident condition of physical inadequacy and private misfortune whose concern only a minority of women (1997: 24). Feminist disability praxis would uphold women’s right to define their physical differences and their femininity for themselves, rather than conforming to the social interpretation of their bodies. Such praxis could address some of the specific issues currently addressed by feminists,

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ones that might look different when seen through the lens of a disability perspective. one matter which, though within the ambit of feminist thought, seems different from a disability perspective is the issue of caring for the mothers of disabled children in India. As I elaborate, ‘Although the stress of impairment impacts upon both the parents, it is usually the mother who bears the brunt of the child’s disability’ (Ghai, 2000: 47). Instances abound where women have been divorced, abandoned or tortured because they have given birth to a disabled child. Given the preference for sons, even here blame of the mother is more severe in instances of a disabled girl child. The fantasy of maternal omnipotence holds mothers responsible for providing the caring. Home care is usually the only option; there often is no question of choice. Indian feminists who have debated over the ethics of caring, and who are now in the process of initiating a debate over equality in caring have not taken note of the conditions in which disabled people, especially girls, are placed (Davar, 1999: 207). within the traditional Indian system, the mother has been a source of succour for the children, especially for girls with disabilities (Ghai, 2001: 21). In the absence of social and community support, disabled women have relied largely on the caring provided by mothers, who undoubtedly have carried the extra burden. while it is perfectly justified to engage with their experiences of oppression in caring, the attempt to destabilize traditional notions in the absence of adequate alternative provisions might end up working against disabled women. In such a context, it will be worthwhile to engage with the cautionary note given by Anita Silvers that ‘far from vanquishing the patriarchal system, substituting the ethics of caring for ethics of equality threatens an even more oppressive paternalism’ (1995: 52). Another significant area where feminist questioning would be invaluable concerns the area of independent living as espoused by disability theorists in the west. In the absence of education, employment, infrastructure, and a Social Security system, autonomy is a formidable goal for women in India to attain, and more so for disabled women. The resolution of any issues concerning disability has to be in the context of the family and community. Indian feminists, with their grasp of the Indian reality, are equipped to devise options that can merge with the specific Indian context of the familial and the social. one possible solution would be to apply Susan Bordo’s view that the concrete experiences of exclusion have neither to be grounded

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in theory nor given a theoretical response (1990: 138). rather, as new narratives began to emerge, the major task is to tell the story of diverse women’s experiences in as truthful a manner as possible. The only requirement is to listen, to become aware of one’s own biases, prejudices and ignorance, so that a process of stretching the borders of what Minnie Bruce Pratt calls the ‘narrow circle of self’ can begin (ibid.). As Bordo explains, ‘no matter how attentive the scholar is to the axes that constitute social identity, some of the axes will be ignored and some selected’ (ibid.). This is an inescapable fact of human embodiment, as Friedrich nietzsche was the first one to point out: ‘the eye . . . in which the active and interpreting forces, through which alone seeing becomes seeing something, are supposed to be lacking is an absurdity and a nonsense. There is only a perspectival seeing, only a perspectival knowing’ (nietzsche, 1969: 119). Perspectival knowing is never really pure. our political, social and personal interests always influence it. even in acting on the desire to embrace our differences, we are unavoidably centric. Mere recognition of difference does not assure that we will construct an adequate representation of difference. Further, constant attention to difference might create and construct others who are unheard of and therefore unfamiliar. Thus, difference is dangerous — and every new context demands that we re-examine the difference. However, a significant questions is what Sharon Lamb (1999) refers to a common tendency in people to accuse others for what is not right in the disability world, posing this question in view of actuality that an accusing stance does not seem to assist, given that it is not possible to both accuse and encourage another to take responsibility for their actions at the same time. As Lamb suggests, as much as we might wish for the clarity of vision a fault and blame position provides, it may be impossible to deal with the complexities that make up the day to day lives of disabled people and those who support them from within this view. Lamb also talks about the zero/sum position blame reinforces and how becoming locked into this position means that we cannot explore questions such as: How far are individuals controlled by the conditions of their lives? At what point in time could the (blamed) person concerned have had a choice to take a different road, to make a different decision. Thus, what is needed is not merely a strong commitment to create spaces where different voices can share their realities and be heard, but

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also an active integration of differences among and within women. However, for this possibility to become a reality, feminist discourse would need to go beyond a mere recognition of binaries. what is required is a consideration of a multiple constraints that inhibit the articulation of difference. This task is an arduous and a complex one, especially when heterogeneity serves as a mere tool to hide homogenous understanding. Hope is essential in the struggle for change. It involves a recognition of the unacceptable nature of the present conditions and relation. It arises from a within social context characterized by unacceptable inequalities and discrimination. It is of paramount importance that hope is grounded in an informed understanding of the social conditions and relations of the past (Barton, 2001: 3–4).

Issues of Sexuality Sexuality for disabled people in India is as much as it is for the west. It has been now a rather well documented fact that within the normative society there has been a conspiracy of silence about the sexuality of disabled people, and it not rated as being a high priority issue even amongst those who are active advocates of the cause of disability. As nisha (2004) indicates, ‘Issues of disability and sexuality do not find a visible space in the disability discourse in India. The movement in India has focused on social change in terms of entitlements like inclusive physical environmental access, employment, and so on’. while the last two decades or so have been instrumental in bringing change in the form of equal opportunities acts, the discourse still continues to be framed in medicalized and human rights terms. The reasons for this neglect could be a general invisibility of disabled people in environments that have structural amnesia and have innumerable communication barriers. The fact that picture has not been very different in the west is evident from a volume dedicated to disability and sexuality in which russell Shuttleworth comments, Historically, the disability rights movement has focused its energy on issues more amenable to social change, such as access to the built environment, education, and employment. By virtually ignoring the sexual issues relevant to disabled people, the disability rights movement thus reinforced the individualized and medicalised view of disability and sexuality that held sway (2007: 2).

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This resonates with what Ann Finger, a senior advocate of disability rights in the US, pointed out as early as 1992. Similarly, Liz Crow, a disability activist from Uk says, I’ve always assumed that the most urgent Disability civil rights campaigns are the ones we’re currently fighting for — employment, education, housing, transport etc., etc., and that next to them a subject such as sexuality is almost dispensable. For the first time now I’m beginning to believe that sexuality, the one area above all others to have been ignored, is at the absolute core of what we’re working for (. . .) It’s not that one area can ever be achieved alone — they’re all interwoven, but you can’t get closer to the essence of self or more ‘people-living-alongside-people . . . than sexuality, can you?’ (1991: 31)

Similarly, work on gender and sexuality has ignored disabled people’s experience of these issues. Specifically in India, the scholars who have engaged with the issues of sexuality have not deliberated on its intersection with disability. John and nair note that, ‘a focus on the conspiracy of silence regarding sexuality in India, whether within political and social movements or in scholarship, blinds us to the multiple sites where “sexuality” has long been embedded’ (2001: 1). They, however, do not consider disability as one of the contested sites. one noteworthy exception has been nivedita Menon (2006) who notes the neglect of the issues of sexuality in connection with disability. She shares very brief glimpses of Ghai (2003), Chib (2001), Tuli (2006), nisha (2004), and Addlakha (2007). However, she concludes by pointing out that, ‘ sexual desire in the work of scholars and activists working on the politics of disability in India, it is evident that this is promising if hitherto, neglected field of research and feminist intervention (2007: xxxv) The portrayal of disability issues are exemplified in reena, a 24-year-old woman with mobility impairment, who could not have intercourse with her husband of five days.22 The husband was feeling frustrated with each day and was already lamenting as to why he had married a disabled girl. He forced her to go to the doctor and ask the gynaecologist as to why she was not been able to give him satisfaction? The gynaecologist took one look at her. without checking her internally, she made the following comment, ‘oh dear, polio does this to people. You should not have got married. Poor man! Anyway, I will write a lubricant for you. Let us pray that you are able to satisfy him, but do not hope too much’.

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The example is indicative of unsettling moments, as there is an interplay of disquieting assumptions that seem to be framing the young woman’s experience. one would be very easily discernible that it is the wife who is in the medical room. Thus, there is a clear demonstration of patriarchy as the husband is pretty sure that the fault could not lie with him. The doctor, even though she is a woman, seems to participate in this view. Further, she believes that a woman’s role in sex is to provide satisfaction to the male partner. However, these observations have been made on innumerable occasions within the feminist discourse. what is more significant for me is that another source of fear, validated by the gynaecologist, is that reena’s disability might have been responsible in causing her inability in providing satisfying sexual relations. what is remarkable is that the doctor even before suggesting a way out is echoing and reflecting the society, which has always nurtured deep prejudices about the lives of disabled individuals. It has been now a rather well documented fact that within the normative society there has been a conspiracy of silence about the sexuality of disabled people and it is not rated as being a high priority issue even amongst those who are active advocates of the cause of disability. In a culture where any deviation from a normally accepted archetype is seen as a marked deviation, the impaired body becomes a symbol of imperfection. The myth of the beautiful/athletic/perfect body defines the impaired body as unacceptable and undesirable. The roots of such thinking are found in Indian mythological instances (see Chapter Three), where Lakshmana, brother of Lord rama cuts off Shurpanakha’s nose, who is attracted to him. That the only way in which Lakshamana can respond to what he defines as non-acceptable behaviour — by disfiguring the ugly female monster — indicates how disfiguring and by extrapolation disability and de-sexing are equated in the Indian psyche. Consequently, the recognition that sexuality can and does plays a significant role in forging personal and social identities is often overlooked. As Foucault says in what way has sexuality come to be considered the confidential and loving place where our deepest ‘certainty’ is read and expressed? Sexuality is not a furtive reality that is difficult to grasp but a great surface networking which the stimulation of bodies, the intensification of pleasures the incitement to discourse, the formation of special

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knowledge, the strengthening of controls and resistances are linked to one another, in accordance with a fee major strategies of knowledge and power (1979: 105).

For that is the essential fact: an understanding of the self mandates an understanding that we exist only as fully embodied beings. However, the cultural devaluation and the extent to which the juxtaposition of sexuality and disability is silenced, makes it all the more difficult for disabled people to have a positive self-identity. The issue is not only that the disabled person must fight to be the author of her/his own sexuality but also must establish sexuality in the first place. what is wrong here is that the disabled person in this society has no sexuality at all. Conversely, disabled girls in north India face no such prohibitions, as is evident from the personal narrative of Simi who shared the following experience, when I was young, I would be thrilled at being allowed to sleep in the same room as Vipin, who was my first cousin. However, as I grew up, I realized that this benevolent gesture of my family was to be understood as a complete de-sexualisation of my body. Later that same cousin once propositioned me and said that he was willing to satisfy my sexual desires, if I promised to keep quiet and not publicize the illicit liaison.

The assumption that sexuality and disability are mutually exclusive also denies that people with deviant bodies experience sexual desires and refuses them recognition as sexually typical, despite their differences. while the last two decades or so have seen a lot of work happening in the field of disability, the discourse still continues to be framed in medicalized and human rights terms. The reasons for this neglect could be a general invisibility of disabled people in environments that have structural issues as well communication barriers. My submission is that the split between the personal and political and, hence, public and private lives is determining factor. It has lead to the neglect of issues of sex and identity within disability discourse. It is quite paradoxical as it is quite evident that lives of disabled men and women have been dissected in public forums and demands for access to public spaces and equal opportunities in education, employment and other areas of life could not have been possible without evolving collective/group efforts. Thus, the introduction of

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private issues into public spheres should not have been difficult. However, the personal lives of disabled women and men continued to be excluded from discourse. It is significant though non-disabled too experience problems in the sphere of sexuality but the disabled need to establish authorship of being not only human but also a sexual being. And the need to prove and assert in face of normative society As Alok, a 20-year-old with cerebral palsy, says, Unlike my non-disabled peers, it is very hard for me to meet other young people who can be prospective partners. To make them understand that I too have sexual desires is an uphill task as the non-disabled appear very close-minded to our sexuality.23

one reason, according to Alok, is that non-disabled people ‘do not grow up thinking of disabled people as sexual beings’. Alok’s narrative reminds us that access to sexual relationships and sexual expression are often caught in barriers which bear a close resemblance to the ones faced by disabled in their attempts to be included in the ‘mainstream society’. All the same, though disabled people are socialized into a form of desexualized subjectivity, voices of disabled people point resistance by recognizing their sexuality. Steven Seidman reminds us, that ‘there is one aspect of human life that has resisted disenchantment, [and that is] sexuality’ (1996: 1). For the disabled people it is really not the bodily difference which counts, but it also requires self-confidence that can resist the differences, says Anupama a 27-year-old visually impaired woman; ‘more than being perfect, being sexual demands a confidence in yourself. How can I develop that confidence without good education and a job? At least if I am earning well someone might decide to marry me’.24 The material conditions, thus, curtail the full expression of sexuality. However, I am definitely not suggesting that if advocacy efforts and policy development can provide universal access, expression of sexuality would be ensured as sexuality is further embedded in the cultural and moral issues. The theoretical divide between what is categorized as a need and what is categorized as a desire is critical as it distinguishes between those claims or requirements that, a society is committed to equity issues. My understanding is that the psyche fact my apprehension is that inclusion of some of the sexual concerns of disabled people within. when the expression of sexuality is related to institutionalized set ups such as marriage, the issue becomes more complicated.

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Says raksha a 24-year-old young woman with visible mobility impairment: Society still thinks that if I am not married, I am not entitled to a sex life. This realization is very painful as I am also like everyone else with same bodily needs like any other woman’s inside. Consequently, I am forced to look for relationships which are under the cover and while my desire does gets gratified to some extent, isolation of my life does not go away. Also, I am always scared as to what would happen to me if they were to discover that I have crossed my boundaries.25

resistance under such circumstances is fraught with turmoil. If someone wants to be celibate and single, it would be fine. However, in a scenario where sexuality is intimately tied to marriage, opportunities for sexual exploration among disabled people in India, particularly women, are very limited. Marriage, which is considered a safe haven for women, is not an easy option for the disabled girls. Thus, for women there is a reduction in life choices also has an impact on sense of worth, which in turn affects sexuality. There is always a fear of being ostracized if discovered. what is more painful is that the ‘tragedy’ of disability for a woman has been perceived not as the assumed effect on sexual activity but on her ability to become a mother. As Sneha puts it, even if I am ready to break away from the codes that have been imposed on me, how do I go about searching for a partner? My dad’s younger brother once suggested that he might be able to ‘help’ me, but you think I can complain about him to my parents? I am doomed either way as for them the need to feel good about oneself cannot be associated with me. I feel that they have always devalued and me so much that I have no clue to look for love and acceptance.26

As Leonore Tiefer writes, Imagine how you would feel if playing gin rummy, and playing it well, was considered a major component of happiness and a major sign of maturity, but no one told you how to play, you never saw anybody else play, and everything you ever read implied that normal and healthy people just somehow ‘know’ how to play and really enjoy playing the very first time they try! (1995: 12)

She highlights the critical role that sex education can play in assisting disabled people assert their sexuality. Most of the disabled people

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grow up without receiving any form of sex education at school or home. This is assuming that they are not actively discouraged from the idea of sex altogether. It is difficult to place the onus on any one agency in particular for excluding disabled people from in-depth sex education is difficult to know. Is it the government, is it schools themselves, be it mainstream or special, is it disability organizations and campaigners, or is it families and carers? The truth is that all parties bear responsibility. As radha says, ‘There is a general feeling that they don’t have the education they need and have a right to’, she says, adding that she has encountered students who do not know the basic facts about sex and are hence vulnerable to abuse. Seema, a hearing impaired girl, says that the only sex education she ever received was from her peer group. while her grandmother had told her about menstruation, no one ever discussed the issue of womanhood: Consequently, there were no opportunities to talk about sexual issues. In any case without any one consenting to marry me, what is the advantage of knowing about sex. Society still thinks that people like me are not entitled to a sex life? I find this very frustrating as my body is just like any other woman’s inside.

The fact that they can be vulnerable should indicate the need for teaching those with disabilities to have appropriate and safe sexual relationships. However, we often find that programmes on HIV as well as STD do not adequately cover the issues of disability. According to Shalini khanna, Director of the Centre for Blind women, national Association for the Blind: Adult blind women have a burning issue of sexuality to be addressed as they feel hesitant in expressing their right to sexual freedom and pleasure. Sexual diseases/ailments are another important area (cited in Tarshi). education about sexuality cannot become a reality unless the attitudes and perception of nondisabled people is worked upon.

we need to be unlocking the disabled body and create avenues for a healthy sexuality, which is not constructed only within marriage. I have come across many examples of professionals, such as doctors, gynaecologists and other service providers, who do not provide relevant information when requested and required. In general, they have a very unfriendly and negative approach towards sexuality and related queries. one has to be married to ask questions related to

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sexual and reproductive health. The attitude with which one is given any information is always preceded with the question, ‘why do you need this information at all?’ My contention is that precise information must be made available. education is a key area as a lot of parents are anxious about their disabled child/adult being sexually active. The parents think that it’s better for them not to know about it. However, many people still hold misconceptions about sexuality among developmentally disabled people, including the caregivers and parents of people with developmental disabilities. A closer analysis reveals that parents internalize the societal conceptualizations. In the case of developmentally disabled the image of them being ‘eternal children’ is very powerful. I think sex education needs to address the fact that there is enough research, which proves that developmentally disabled people are learning all the time about many vital areas of life, which includes sexuality. They are fully capable of registering the difference between ‘public’ and ‘private’. It is only by challenging prevailing socio-cultural values and the binaries of normal and abnormal, that disabled people can resist normative constructions of them as dependent, asexual or deformed, and begins to forge new identities. we need to contest the notion that biology is a given destiny and identity is always fixed though the task may appear formidable, the recognition that our knowledge of the world is a matter of constructed meanings, and not irrefutable facts, will provide the catalyst for change. Media has a very important role to play in rethinking about sexuality issues. As disabled people, the invisibility of our lives becomes heightened by the fact that popular advertising implies the belief that ‘normal’ body is that which is desirable. That there is an ideal weight, ideal size, and ideal colour is emphasized by the media time and again. once these messages become internalized disabled people get trapped in subscribing to the non-disabled ‘norms’. Consequently, comfort and health may be sacrificed, as there is always an attempt to be identified as ‘normal’. Since disabled people exist in society as an excluded category, the struggle is onerous and often seditious. when Foucault says that bodies are a battlefield, he is pointing out that we are intimately involved in conventional social practices. If certain identities are to be permanently disabled this means direct challenge by those who are

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willing to bear the costs of transgressing their own customary identities. Unless these activities should be valorized as political action on the individual level, oppressive practices will go on. It is only when we are persistent in refusing to live with the images that society has of us, can we fight the often-insidious battle of expressing sexuality. It is in this context that not only women but also men with disabilities are also prone to sexual assault and exploitation. whereas Mohapatra and Mohanty (2004: 8) note that ‘women and girls with disabilities are particularly vulnerable to violence within their home situation. Sexual abuse is quite common, especially among women with mental and/or hearing disabilities. Abuse by physicians and caregivers, e.g., forced sterilization, is common’. The research study covering 12 districts of odisha and focused on ‘domestic violence against disabled women’. Mohapatra and Mohanty concluded that there is no question that abuse of women with disabilities is a problem of epidemic proportions that is only beginning to attract the attention of researchers, service providers, and funding agencies. The gaps in the literature are enormous. For each disability type, different dynamics of abuse come into play . . . certain commonalities exist across disability groups, such as economic dependence, social isolation, and the whittling away of self esteem on the basis of disability as a precursor to abuse (2004: 35).

In contrast, Addlakha’s research based on four case studies intensely depicts the ‘deep sense of personal devaluation and foreboding’ faced by the two young men with visual and physical impairments (2007: 119). The fact that hegemony of the patriarchal and normative is very strong as, these men expressed a preference for a non-disabled partner, so that they were able to compensate for their impairment by aligning themselves with ‘a non-disabled spouse in a society which equates absence of vision with individual invalidation and social disfranchisement’. Addlakha asserts that ‘both preferences show the importance of the ‘us–them’ (disabled, non-disabled) distinction in the experiences of some persons with disabilities, be they in the area of education, employment or sexuality’ (2007: 121). My submission is that a complete absence of literature that addresses issues around the public participation of disabled people with respect to sexuality issues. Thus, the universality of workaround disabled sexuality should not be narrowly described as a matter of sexual desire as the most important issue is that of intimacy.

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However, the development of effective social policies that will address disabled people’s sexual issues is a daunting challenge. The transgression of normative notions of embodiment and function — normative in the sense of being able to walk, talk verbally, perceive visually, hear audibly, cognize, or behave in a so-called rational way — affects not only how disabled people are viewed as persons in society but also how they are constructed as sexual subjects, which is often as asexual or hypersexual. The barriers to sexual expression, sexual well-being and sexual relationships that many disabled people confront can often be traced to the symbolic meanings and values that are called up from the cultural imaginary by these transgressions of normative functions. To me access is merely structural — the socio-political aspects of disablement. Finally, I would like to point out that gender differences intersect with the question of disability and sexuality. As a mother of developmentally impaired girl commented, ‘I am thankful that I have a disabled girl and not a boy. It would have been extremely difficult to curtail his sexuality’. Since within the Indian scenario men are expected to be active, dominant and able to take the initiative, such a conclusion might not appear unwarranted. The assumption that loss of sexual function is of greater importance for a man is quite deep-seated in India. Though attitudes towards gendered behaviour are shifting, they are limited. In any case, there is no serious reflection on the discourse surrounding disability and sexuality. Although the disability community itself has recognized that disabled men are far more capable of sexual feelings and activity than the stereotype allows, the presumed loss of self-directed independence has been seen as the most salient point. As Sudhir, a person with cerebral palsy says, ‘I think people do not rate sexuality as important because I am a wheelchair user that is itself self-explanatory.’ Thus, both disabled men and women get oppressed in an ablest society, which results in them living a single and isolated life against their will. It requires courage to challenge sexual normativities, particularly by those perceived as ‘weak’, but as David, who has a speech impairment, puts it: ‘people on the fringe — and we are — need to position themselves not in the secure mainstream but they need to be on the edge and they need to take risks and gamble’ (Shuttleworth 2002: 118).

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notes 1. Available at http://www.bbc.co.uk/news/education-15206416 (accessed on 5 november 2011). 2. DTC bus driver kuldeep Singh, who saved many lives in a deadly terrorist strike three years ago, is pleading with the government to save his own small world. Singh was disabled in a bomb blast at Govindpuri on 29 october 2005. He lost his eyesight, the fingers on his right hand, is hearing impaired and can’t walk without help. He is quite depressed and is in the process of incurring huge medical bills. ‘Delhi chief minister had promised me on 25 January 2007 that the amount would be reimbursed by DTC’. He said he deposited the bills for Inr 2.5 lakh in February 2007. For more details, see http://indiatoday.intoday.in/story/This+is+ how+we+treat+our+heroes/1/21836.html (accessed on 4 December 2014). 3. Following a row about an affidavit from the Planning Commission to the Supreme Court of India, in which the official poverty line was set at Inr 26 rupees (around USD 0.53) per person per day in rural areas and Inr 32 in urban areas (4 october 2011). 4. Personal Communication on 4 July 2010. 5 Swarnajayanti Gram SwarozgarYojana (SGSY), Sampoorna Grameen rozgar Yojana (SGrY), the Indira Awas Yojana (IAY) are some of the schemes that are intended to reduce poverty. 6. During the financial year 2003–4, individual Swarozgaris who assisted in this Scheme were 254,615, out of which disabled persons were 3,593 (1.41 per cent). Total members of Self Help Groups were 453,006, out of which disabled persons were 2,020 (0.45 per cent). Likewise, barely 80 per cent disabled were assisted to get into self employment. The figures are equally abysmal in a scheme that is intended to provide housing (Indira Awaas Yojana). Three per cent of the funds are reserved for the benefit of disabled below the poverty line in rural areas. Again only 0.84 per cent could be assisted in this endeavour. 7. In general, persons with disabilities are covered under the Ministry of Social Justice and empowerment, which is a nodal ministry dealing with subject of disability. 8. The act has been discussed in Chapter Three Disability. 9. Based on the draft policy on persons with disabilities. 10. See Mithu Alur (2006). 11. A research study by the national Centre for Promotion of employment for Disabled People (nCPeDP) reported that, in total of 119 respondent universities, only 1,635 students with disabilities are enrolled. Considering that there is 3 per cent reservation, the figure of 0.1 per cent is

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abysmally low. It is worth noticing that many reputed universities such as Delhi University, All India Institute of Medical Sciences (new Delhi), Indira Gandhi national open University (new Delhi), Jamia Millia Islamia University (new Delhi), Bangalore University (karnataka), University of Calcutta (west Bengal), University of Calicut (kerala), amongst others did not respond to the survey. Details of the research study available at http://www.ncpedp.org. Delhi University has initiated a multi-purpose resource Centre with a variety of study materials in Braille format and special studios which will transform text messages into audio cassettes. Braille production, talking book production and electronic text production will be the three focus points for the Centre. According to Dorodi Sharma of D.n.I.S ( 2011), employment of people with disabilities in India, even in the public sector, where it is mandated by law, has been very dismal. The 3 per cent reservation as per the Disability Act of 1995 has not been met. Till november 2010, only 1,017 vacancies out of 7,628 backlog vacancies had been filled up by the Government. An incentive scheme for private sector employers recruiting people with disabilities was launched with much fanfare in 2008 by the then Finance Minister with a tall claim of creating 100,000 jobs per annum. To say that the scheme has been an embarrassing failure will be an extremely polite statement. The trends observed through the n.C.P.e.D.P.–Shell Helen keller Awards, which have become a benchmark for those promoting employment opportunities for people with disabilities, is also an indicator that only a handful of companies/ organisations are doing anything worth mentioning to promote employment of disabled people. The same corporates (read IT sector companies and the hotel industry) keep appearing each year with a few new entries. At this meeting also the participants were the usual suspects. Moreover, only three Indian companies have so far joined this network. All these facts point towards a very disheartening scenario for people with disabilities in India vis-à-vis employment. See http://www.dnis.org/ features.php?issue_id=5&volume_id=8&features_id=18 (accessed on 4 December 2014). Available at http://socialjustice.nic.in/pwdact1995 (accessed on 26 november 2014). According to the Annual report of the Ministry of Labour and employment (2007–8): • T here are 43 Special Employment Exchanges ( as on December 2005). The number of disabled job seekers placed in employment during 2005 was 3.2 thousand. The live register has 109,632 people with disabilities.

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• D uring 2007–8, Vocational Rehabilitation Centres registered 30,967, evaluated 30,452 and rehabilitated 10,518 persons with disabilities. • Placement Service to disabled ex-servicemen/Border Security Force personnel and their dependents are provided by ex-servicemen Cell set up by DGeT. At the end of September 2007, there were 242 disabled soldiers and 2,365 dependents awaiting employment assistance through the Cell. • Under the Apprenticeship Training Scheme: Training Statistics of Trade Apprentices — the total number of seats were 258,163, 185,224 were utilized and 1,067 were allotted to the physically handicapped. Training Statistics of Graduate, Technician (Vocational) Apprentices — out of 95,360 seats, 48,743 were utilized and 107 were utilized by physically handicapped. (0.22 per cent).

16. A research study conducted by an nGo, ‘national Centre for Promotion of employment for Disabled People’ (nCPeDP) in collaboration with the national Association of the Blind (nAB) in 1998, indicates that earnings are extremely low, with 47.5 per cent earning getting less than Inr 1,000 per month. Those in employment rarely find it smooth sailing. Most are routinely replaced with non-disabled workers on the assumption that disability hampers their competence. The dream of independence through employment is largely unrealized. The data further reveals that the corporate world too is not terribly forthcoming in resolving the problem. within 1,628 private sector companies that were approached for placements by the non-governmental organizations, in the period of 1996 to 1998, only 1,157 disabled people found jobs. only 220 disabled people found jobs in the 804 public sector companies approached in the last two years. within this data, specific gender estimates are not available but the best estimate is that only one quarter of total employment opportunities go to women. 17. Sambhavana is an nGo that works with visually impaired people. 18. The issue of discrimination in Civil Services is serious as qualified disabled persons are relegated to lower ranking jobs because of their disabilities. There was a discrepancy between the Union Public Service Commission (UPSC), the body that conducts the Civil Services exam, and the Department of Personnel & Training (DoPT) that allots services. UPSC had been providing Braille question papers, scribes and extra time for visually impaired candidates for over a decade. Then when they qualify, DoPT tells them that no service has been earmarked for visually impaired candidates. Various campaigns such as that of the nCPeDP, demand justice and a clear policy for non-discrimination of

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21. 22.

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disabled people in the Civil Services. However, it is not smooth sailing always. Advocates have formed a group, called Viklang Manch, to demand that disabled people be treated equally for eligibility under the Mahatma Gandhi national rural employment Guarantee Act (MGnreGA), the country’s flagship welfare programme, which promises 100 days of employment a year to poor rural households. on 2 october 2009, when the disabled workers dug a water tank for Atun Panchayat in rajasthan, they earned Inr 75 each for the day’s labour, more than the Inr 66 per head able-bodied workers doing the same job. Available athttp://media-dis-n-dat.blogspot.in/2009/10/disabled-people-in-indiajoin-forces-to.html (accessed on 4 December 2014). According to the data released by the rural Development Ministry, west Bengal and Chhattisgarh are the best performers in this regard, providing jobs to 30,903 and 14,122 disabled people, respectively, between April and September. Bihar provided jobs to a mere 41 disabled people in this period. The code is available at http://www.dnis.org (accessed on 12 August 2010). reena and other names mentioned in the chapter are fictitious names. The data of this chapter is based on interviews with a group of disabled women as part of a research on disabled women and their issues. Interview with Alok as part of a research work on sexuality and disability. Interview with Anupama (personal communication). Interview with raksha (personal communication). Interview with Sneha (personal communication).

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he earlier chapters have clearly indicated that being located as less-than-perfect person in a society is to contend with indifference and oppression and the able body norm is seldom questioned. There have been positive changes but some of the concerns discussed in India and elsewhere are serious. A number of complex issues, such as mercy killing, prenatal selection, cochlear implants, to name a few, are concerns that have critical significance for lives of disabled people. notwithstanding the problem of selection on the grounds of sex in India is banned, selection on the basis of disability, however, has a positive sanction. The debate about whether the choice of selection on the grounds of disability should be legal evokes mixed reactions. The existing arguments suggest that antenatal screening is not understood in any uniform way either within feminism or the disability movement. Similarly, cochlear implants does not have a clear basis, which can be debated by disabled movement as well as the academic settings. The increased interest of disabled people in such issues is an indication that they feel affected by these issues. A closer look, however, reveals that the disabled debate these issues mostly amongst themselves and that little dialogue exists between disabled and non-disabled people on these issues. More so, as issues such as mercy killing, prenatal selection, cochlear implants, enhancement, cannot be resolved by just admitting that these are sensitive issues and such moral dilemmas present themselves in different societies. However, the impasse can be as stifling as the need is to articulate ideas that have the potentiality of changing the scenario. It can be understood as it is not possible to give answers in affirmative as these are no right or wrong answers. My endeavour, therefore, has been to present before the readers ‘bodies’ that are dis(embodied) because of constructions that create a total invisibility of the disabled people. Since disability constructions are associated with ‘suffering’ every day very difficult decisions

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have to be made about what is appropriate and what is not. The complex multi-cultural realities in India pose catch-22 situations. My desire is to voice these concerns, so that wide public debates can be initiated. The last few months have confronted us with headings that are thought provoking. From my vantage point, my anxiety is exacerbated. I first take up prenatal selection in context of a reading of the PnDT1 act shows that while selection on the grounds of sex is banned, there is a positive sanctioning of selection on the basis of disability.

pRenAtAl selection Disabled people have been critical of prenatal screening and selective abortion, seeing them as a new strategy of eugenics (Shakespeare, 2006; Ghai and Johri, 2008).2 In the Indian scenario, feminists were quick to indicate that the techniques aimed to detect foetal abnormalities were also capable of providing information about the sex of the unborn child. Given the extremely patriarchal nature of much of Indian society and the marked preference for male children, techniques of prenatal diagnosis were more likely to become techniques for sex selective abortions. It is clear that choice of selection on the grounds of disability evokes mixed reactions. To my mind, antenatal screening is not understood in any uniform way either within feminism or the disability movement. while many scholars writing between the interfaces of feminism and disability activism, understand the right to abortion as creating a gulf between the two perspectives (Hubbard, 1997; Shakespeare, 1998; Sharp and earle, 2002), others like Parens and Asch (2000); McLaughlin (2003) and Menon (2004) think that there is a possibility of reconciliation. within feminism the critical factor in all abortion debates is that women have the individual right to choose. However, such choices are not always autonomous and free. Consequently the activists in the disability movement objected to this unqualified right as it has important bearing on the discrimination experienced by the disabled. In 2005, Sunita Bandewar pointed out the dilemma about selections. She reasoned that since women face the most reflective impact of such children upon their birth, they should be the sole decision makers to either continue or terminate pregnancy. However, this

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position potentially strengthens the ‘normative’ conceptualization of ‘disability’ which is value-laden. It sets a precedent for elimination of ‘unfit’ people. Similarly, nivedita Menon (2004: 96) echoes both Sharp and earle (2002) and Bandewar (2005: 20) when she warns that ‘once we accept that there can be a hierarchy of human beings based on physical characteristics, and that it is legitimate to withhold the right to be born to those at lower levels of this hierarchy. Then this reasoning can be extended to other categories, whether female, inferior races or any other. The moral dilemma between disability rights and reproductive rights are feminists with disabilities who are pro-choice, who do argue against selective abortion of ‘defective’ foetuses (Saxton, 1996, 1998; Asch, 2003; Ghai and Johri, 2008). Though both the disability advocacy and the women studies movement share a commitment to women’s control over their lives and bodies. Though the fights of two movements as interwoven specifically in India but a dialogue between the movements is not very active. Since sex selection is a serious problem in India, abortion of foetuses identified as disabled has also been attended earnestly. The factor that oppressive attitudes against disability dominate the counselling given to pregnant women and have challenged the assumption that the world would be a better place without disabled people. According to pro-life supporters is that the right to abortion is at the root of all such discriminations (owen 1992; Saxton, 1998).3 early in 1983, Beverly wildung Harrison argued in her moral defence of the pro-choice position that ‘women’s right to the condition for procreative choice, “to present” a forceful caveat against much that passes as unquestioned wisdom in Christian tradition and teaching — on women’s nature, on procreation and on abortion (1986: ix). For me reproductive rights are significant, as I believe that woman can/should be in a position to determine the course of her reproductive life. However in India and maybe elsewhere though a legal system allows abortions, many abortions are illegal, increasing the morbidity for women. Thus, the construction of abortion as individual choice needs considerable rethinking. It has been suggested in a review of several researches that amongst married women, husbands and mothers-in-law, are often the major agents in the decision-making process (Visaria et al., 2004). Two other interesting features emerged from this review. First, women reported that while abortion is an immoral act per se, it could be condoned if it was performed for the sake of family honour. Second, women who

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opt for abortion after giving birth to several daughters, receive more support than those who do so for other reasons. Many women also reported being forced violently to undergo abortions. Furthermore, in the case of sex determination and subsequent female foeticide, families make the decision after cost-benefit analysis factoring in the relative long-term gains of saving on dowry. Feminists are therefore in the difficult position of supporting abortion even while they recognize the limited agency that women possess. The underlying logic is that abortion rights are necessary in an imperfect system where the mother has limited ability to control her own reproductive capacities. The question, both practical and ethical, is that if women have the right to choose, how can a distinction between abortion and selection be maintained? The crucial element that needs analysis in the debate concerns the category of child or more medically speaking the foetus. In a time before prenatal diagnosis the issue of abortion was concerned solely with the mother’s ability to rear a child. while decisions were rarely taken autonomously and were guided by the legitimacy of motherhood for the woman, they did not involve the ‘qualities’ of the foetus. with the advent of prenatal diagnosis the idea of the foetus has shifted from being one generic entity to one with specified properties. The first of these properties namely the sex of the child has already shown itself to be problematic. The Indian context unwittingly provides us with a setting in which women can reflect on ethics of selection. Since sex selection is pervasive in India, feminists have had no choice but to grapple with the issues of agency within which these decisions are encompassed. The popular and the overriding voice of feminists are to argue that since women possess limited agency, legal systems have to be strengthened to protect them. At the same time, as highlighted by Menon (2004), individual women who have ‘opted’ for sex selection should not be punished. Instead, the onus of responsibility lies with the medical practitioner who provides the information about the sex of the unborn child, and the socio-cultural context that valorizes sons over daughters. The intricacy of the issue is evident in the perspective of feminist Manjula Padmanabhan, who asks whether there can be, anything more grotesque than to be forced to carry an unwanted living presence within the sanctum of one’s own body? In a twisted sort of way, women who abort their female foetuses are voting against their own misogynist culture and in that sense, are subverting it . . . Given the world

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we have now, it is far better to enable women to take this life-denying decision of their own accord under medically and legally safe conditions than to saddle them with babies whom they will revile and devalue as they were reviled and devalued (cited in Menon, 2004: 94).

when sex selection has evoked so much debate, the issue of selection on grounds of disability is clearly more complex. Again, central to this discussion is the difficulty in conceptualizing women’s agency. Both the mother of an unwanted daughter and that of a disabled child face tremendous difficulties. To choose to give birth to a child with disability is to challenge dominant social constructions of both motherhood and childhood. If it is possible to argue that the desire to abort a female foetus arises from the conditions of patriarchy, is a similar logic not applicable to disability selection? I came to this debate from my vantage points of being a disability researcher and activist, and rachana Johri, a researcher on motherhood (Ghai and Johri, 2008). I believe that women must retain an unfettered right to abortion. For me this right should accrue to both disabled and non-disabled women. Therefore, my understanding is that woman with disability too has the right to motherhood or abortion. If it is possible to argue that the desire to abort a female foetus arises from the conditions of patriarchy, is a similar logic not applicable to disability selection? I draw upon data from three qualitative research studies, primarily involving in-depth interviews with mothers. The first set of voices were from an on-going study by Johri (2001) in which mothers of young children are asked about the specific circumstances under which they would opt for abortion. one of the issues discussed in detail is what the informants would do in the face of a potentially disabled foetus. All the participants in this study were college-educated and belong to the urban middle classes. At the time of writing, interviews had been conducted with 20 mothers with one or two children. The selection of the participants was based on the age of their children. Thus, mothers with children below six were chosen as they are at the peak of their reproductive lives. A second data source is on-going research in which 30 mothers of children with developmental disabilities are being interviewed. Again, the women belong to the middle class and are residents of Delhi. The third study that has been cited is research conducted by Singh and Ghai (2009). The participants were 14 visually-impaired

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girls between the ages of 16 and 18 years studying in a residential school for the blind in Delhi. Among other issues on which detailed qualitative interviews were conducted, the students were also asked to respond to a dilemma about abortion. First, as in many other issues, there is no homogenous or essential woman’s voice concerning the legitimization of the abortion of a disabled foetus. Second, despite the absence of homogeneity the dominant voice does favour abortion of the disabled foetus. The similarities and contrasts in these voices help to better comprehend the context in which such choices are made and to establish an alternative rendering of the question of aborting disabled foetuses. exploring the underlying reasons for justifying or rejecting such action helps to better comprehend the context in which such choices are made and to arrive at an alternative rendering of the question of abortion of disabled foetuses. In the previous chapters, I have argued that part of the difficulty in understanding of disability lies in its unequivocal construction within the medical model. The location of the problems as residing within the individual perpetuates the image of the disabled as sick, flawed, ‘afflicted’ and suffering. The medical model sees the availability of reproductive technologies as a blessing that prevents disability. This construction is well represented in the advice column of a popular magazine (Parenting, 2007). The discursive construction of the perfect pregnancy and, hence, the perfect child is apparent in this brief extract from an advice column: responding to a query about the safety of ultrasounds during pregnancy, the gynaecologist begins by focussing on the benefits of the ultrasound to detect the age of the foetus, its position and other issues. However, she proceeds to talk of the benefits of a second ultrasound conducted during the 13th week of pregnancy to ‘look for certain congenital abnormalities like Down’s syndrome or anencephaly. In these cases timely intervention can prevent a lot of mental trauma to parents as these pregnancies can be easily terminated at that stage. A third ultrasound is done at 22 weeks as most organs have developed at that stage and parents can be given proper counselling (emphasis ours).4

Indeed, most medical professionals would not find this scenario exceptional. It is worth noting that the advice does not have any information on the nature of disability, its severity and the possibility of raising a disabled child. If professionals such as obstetricians

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and counsellors are truly committed to the process in which parents take decisions that are informed, they should be providing enough information about life with a disabling condition so that prospective parents can imagine the ways in which life can be rewarding as well as difficult. However, the approach is clearly directive as it offers powerful social confirmation that prenatal diagnosis is not only projected as usual but highly necessary and desirable. My submission is that in India, and I am sure elsewhere, medical training and counselling do not take incorporate the social and cultural factors that contribute to suffering. This is evident in the narratives of young mothers who were overwhelmingly in favour of aborting a disabled foetus. It is clear that the practitioners do strongly urge women to have tests. The fact that they usually speak from the position of an ‘expert’ makes their suggestions critical. As Puneeta, a homemaker with a 10-month-old daughter, puts it, ‘my doctor told me this when she sent me for the first ultrasound. we want to check if there is any abnormality. After the third month if there is any abnormalities then abort the child’ (Ghai and Johri, 2008: 299). Thus, the medical discourse ‘empowers’ couples by offering tests for a growing range of conditions. They provide non-directive counselling, enabling parents to take their own choices. Yet the ethical issues and the theoretical and practical possibilities of ‘non-directive’ counselling have remained uninterrogated. My concern is that a genetic counsellor simply reproduces the biases of the larger society. As Annette Patterson and Martha Satz point out: Serving both as purveyors of genetic information as guides in decision making, genetic counsellors often preside over prenatal sessions where parents are considering whether to continue or terminate pregnancy. This process has profound implications for society in shaping attitudes about what constitutes a life . . . worth living’ and, potentially, the provisions society will make for those with disabilities (2002: 19).

examples abound of mothers who were told at the time of the birth of their disabled children that the child would not survive for more than a few years or would show extremely poor intellectual development. Many have survived for years and often reached levels of capability that far exceeded the expectations.5 This will prevent possible negative effects of genetic counselling on the self-image and material conditions of disabled individuals.

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It is clear that although medical knowledge is uncertain and ‘disability’ is often used as a catchall phrase for the avoidable, experts push decisions towards abortion. In addition, if the developments are to be believed, future technology will enable the detection of predisposition to a number of diseases, such as diabetes, depression, Alzheimer’s disease, heart disease, arthritis, and breast cancer. will the fantasy of a perfectly able-bodied society entail the abortions of all foetuses with potential difficulties? Yet another reason and possibly a very effective one reminds parents that the upbringing of a disabled child would entail extra time, money, and suffering for the child as well as the family. It is interesting that while suffering associated with disability is assigned a negative value, suffering that is inflicted voluntarily on the self in order to achieve physical perfection is valorised. As welsch puts it, the current aestheticization seems to attain its consummation in individuals. we are experiencing everywhere a styling of body, soul and mind — and whatever these fine people might want to have (or acquire for themselves) in beauty saloons and fitness centres they pursue the aesthetic perfection of their bodies . . . Future generations should then have it easier straight away: genetic technology will have come to their aid ahead of them, this new branch of aestheticization which holds the prospect of a world full of perfectly styled mannequins (1996: 6).

Yet the cost of bearing a child with disability may include emotional pain and suffering, loss of a child, loss of opportunities, loss of freedom, isolation, loneliness, fear, guilt, stigmatization, and financial expenses. In fact, people who argue in favour of disability selection often accuse activists of being insensitive to the ‘cost’ to women. As rayna rapp reminds us: women judge the acceptability of specific foetuses for entry into their communities because there are so few limits on women’s responsibility for the quality of the life that child would have. In other words our gendered responsibilities for producing acceptable children as well as our embodied responsibilities for the pregnancies that produce them over determine our need to think deeply about the consequences of knowing about and possibility eliminating disability prenatally (2000: 308).

Also taking care is not an experience that can be contained within domestic domains. Since the onus for determining the social location of care is largely in the patriarchal hands, caretaking usually

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gets added to the unpaid labour of women in the home. As a result, it is both the disability as well as perpetual motherhood that shape genetic decision-making. The fear of extensive caretaking and responsibility are evident in the voices of the young mothers. Sandhya, a disability activist, has brought up a Down’s syndrome daughter in an engaging way. However, she does suggest an abortion in case of a Down’s syndrome foetus: ‘There is no doubt about it. I am very clear about it’. Her clarity stems from the fact that there is no end to suffering of the mother. ‘Though my husband has been very co-operative, I’ve gone through a real tough time suffering and with the child suffering’. Though people are more open minded, the society would never consider physically or mentally handicapped children as equal to able children. Mothers also fear the greater responsibility that comes with a disabled child. one of the young mothers shared the guilt for aborting the child, ‘I guess you feel the amount of responsibility. I am not strong enough to bring up a special child’. Another mother said, ‘to bring up that child is the responsibility of a lifetime. no one else will take care especially after you die’. She continued: In her case the doctors indicated a problem with the heart. I had to go to escorts hospital. Then I had thought that if there were a problem, I’d get an abortion done. The thought of the baby being born and getting tubes and put all over her was very uncomfortable. Any deformity would make a difference. If you don’t know, then you cannot help it, but once you find out, then don’t take up the responsibility. If she is born, then you have to take care of it, but otherwise it is better to prevent [it].

The mother’s relationship with a disabled child is complex, specifically in the context of disability. Care giving for mothers was a full time job. For most of the children, their disabilities limited their mobility. They felt safe and comfortable knowing that their mothers would ‘take care of everything’. For them, their mothers protected them and were a safe haven. Many women who participated in Johri’s doctoral study (1999) described how they were blamed and ostracized by their conjugal families and the larger community for their failure to give birth to a son. Archana, a mother of three daughters, who was the principal of a school, narrated the painful days following the birth of her first daughter. when her mother-in-law finally came to visit her in the hospital, Archana said, ‘She behaved as if I have committed a crime. on the nurses asking for an inam (reward)

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she commented; ‘you are asking for a gift. we are bereft (Hum to kahin ke na rahe). She may as well have not survived’. Archana was devastated saying, ‘I felt very bad. Today, if I had a son everyone would have gathered around me, celebrations would have taken place. And they have not even brought me food’. Archana’s experience was heightened when the husband gave tacit support to the mother. with the birth of the third daughter, the mother-in-law stopped eating for three days. Such is the lamentation following the birth of daughters that Archana’s community constantly conducts a shok sabha (mourning) for her as the poor woman who has three daughters, none of whom died. The psychological costs of bearing the less than perfectly desired child are considerable for the mother. Apart from psychological costs that are experienced directly by the mothers, the disabled child is constructed as economic liability and therefore a burden on family and society. In a global context where the profit paradigm predominates, very often the justification given for preventing the disabled from being born is that the state/ society has to bear the cost of disability. The scarcity is often cited as a rationale for disability selection. while the billions spent on wars (major source of disablement) are not lamented, the money spent on disabled people is constructed as high cost. economic factors are at the root of the persistent devaluation of disabled lives. This rationale is, however, flawed. Prenatal diagnosis creates an illusion that disability will be wiped out if researching genetics is successful. However, under no circumstances is a total erasure of disability possible. we know that barely 2 per cent of all births are affected by disability in the womb.6 Disability may occur at any time during pregnancy, delivery or at any other time during the lifespan. Much impairment does not have a clear aetiology. And since prenatal testing can carry some risk for the foetus, it is likely that only women with high-risk pregnancies will go through with it. Though many disabilities, such as sickle cell anaemia, Down’s syndrome, adult onset Huntington’s, cystic fibrosis, and haemophilia, are considered grounds for abortion; in reality, many persons with these disabilities do become independent and lead productive lives, if given the opportunities to do so. This is not to say that there would be no disabled persons who will require care, but such an expectation is legitimate within a just society.

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Another rationale offered in support of prenatal screening is the enrichment of parental autonomy. Peter Singer, a well-known contemporary bioethics scholar, uses this argument to justify genetics: There are many things that people who are paralyzed below the waist could not do in any society, no matter how constructed. They cannot visit untracked wilderness, go ice-skating, or play football. And many other things that they can do, they can do only with difficulty and with more time than it would take those who have the use of their legs . . . The decision to abort a foetus that has, say, Down syndrome, is not a decision that is ‘anti-children,’ still less ‘anti-life.’ It is a decision that says: ‘Since I will only have two children, I want them to have the best possible prospects for a full and rich life. And if, at the outset, those prospects are seriously clouded, I would rather start again.7

In this discourse the choice to determine the nature of the foetus is constructed as a parental right. But a reading of the narratives from our research indicates that parental rights and autonomy are differently constructed, depending upon a mother’s social location and experiences. Although some mothers of non-disabled children did argue in favour of this right, other mothers of disabled children held a different view. These children were, however, born before the technology was routinely available for clinical use. For instance, Shanti, a 60-year-old disability advocate and mother of a 28-year-old disabled son, admits that she would have had the abortion had the choice been made available to her. She said, ‘I was too [much of a] perfectionist — too intellectual’. However, when asked whether she would give similar advice to young mothers, she responded in the negative. She feels living with a Down’s syndrome child has given her an opportunity for deep learning. She would not like to exchange this experience for anything. Many parents like Shanti will attest to the potential for self-transformation that comes about as a result of bringing up a child who has Down’s syndrome. Prenatal screening and other future selective technologies make us lose sight of the possibility of transforming the hostility and prejudices that we carry for anyone who is different. However, there is considerable difference between living with the disabled and their stereotypical portrayal in popular imagination. The gap between stereotype and lived reality is evident in the narratives of visually impaired girls in the research study by Singh and Ghai (2009). while visual disabilities are often not genetic, the issue

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concerns the difference between the construction of disability and the experience of living it. radhika is a 17-year-old visually impaired girl, originally from a remote village in Uttar Pradesh and now studying in a residential school for the blind in Delhi. responding to a hypothetical query regarding what she would say to a mother who might give birth to a disabled child, she said: ‘There are good and bad traits in everyone. I would tell her not to abort the child, but help the child to develop an identity, to teach him/her how to live in this world’. Similarly Puja, her schoolmate, added: ‘I’ll also tell her that you should be teaching your child to live, to face this world . . . And we should be doing something throughout our life, so that they [society] can remember us.’ Like non-disabled girls growing up in a patriarchal society, some disabled children may internalize the dominant voice of the culture and argue for the abortion of disabled foetuses. Many others, as the narratives show, disagree. It is interesting how social constructions are powerful. kleege, for instance, reports: people take for granted that I don’t have children because I don’t want to reproduce my defective genes. who would want to risk bringing a blind child into the world? on two separate occasions in my life, women have told me that they would abort a foetus if they knew it would grow up to be blind (2006: 66).

This gap is poignantly addresses by Deborah kent, for instance, writes about the gulf between herself and her beloved husband, between herself and her parents, regarding her blindness, a gap she was herself unconscious of until she and her husband decided to have children. She writes, ‘what I understood was that Dick, like my parents was the product of a society that views blindness and all disability, as fundamentally undesirable’ (kent 2000: 58). Thus, kent does not look at life with disability as one of unmitigated suffering. If, nevertheless, some mothers of disabled children believe that they would advise a prospective mother to abort the foetus, what might be the underlying process? Diya, a 72-year-old middle-class woman, is actively involved in advocating the rights of intellectually challenged adults. She herself has a 24-year-old son with Down’s syndrome. Though committed to caring for her son, she points to the discrepancy between her own feelings and the dominant construction of disability. Diya is of the view that if a young mother discovers any genetic defect, such as intellectual impairment, she should abort

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the child. She feels that although there is greater awareness about disability over the past two decades, the negative mind-set of people has not really changed. She recalls with horror the agony and turmoil that she experienced while getting her daughter married because the whole family was stigmatized. She was equally perturbed by the frustration of her son, who was not allowed to be present at many social occasions. Her relatives would often explicitly tell her to leave her son at home. Similarly, another mother who has a 37-year-old son with Down’s syndrome was distressed when her son expressed a desire for marriage: she has no solutions to offer him. Then, kamal, mother of a grown-up son with developmental disability, said that although she herself did not do so, she would advise a mother expecting potentially disabled child to get the foetus aborted. She feels that even though society might have changed, disability is still perceived negatively. All the interviews indicate that disabled children are perceived as socially unwanted. Although the narratives included here refer to mothers with intellectually challenged children, we feel that the findings apply in the case of other disabilities as well. while it is possible to deconstruct the voices of mothers with or without disabled children, the contrasting narratives of visually impaired girls bring out the real paradox in the notion of choice and disability selection. Indeed, the disabled often do not experience their life as unmitigated suffering. Many feminists have repeatedly cautioned against the notion of universal womanhood. My understanding is that the specificity of their locations will generate a difference in the voices of mothers and daughters on disability. nonetheless, what is not disputed is that women have an inalienable right to free choice in the area of reproduction. Health professionals and the wider society do not sanction the birth of a disabled child. Therefore, if women make choices that go against the societal norm, they are likely to be blamed. even in the case of polio, it is often presumed that the mother must have been at fault by not having had the child immunized. Instead of getting support, counselling, understanding and information, people are pressurized into conforming to societal norms and expectations. It is important to note that a focus on individual reproductive choice overlooks the underlying assumption of prenatal diagnosis, namely, that only certain kinds of people should be born in this world. The very existence of prenatal tests assumes that parents will want to

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select against atypical results. Consequently, is othere really a notion of free choice in the true sense of the word indecisions related to elimination of disabled foetuses? Michael Bérubé, as a parent of a boy with Down’s syndrome, writes, I obviously can’t and don’t advocate abortion of foetuses with Down syndrome; indeed, the only argument I have is that such decisions should not be automatic. A foetal diagnosis of Down syndrome should not be understood, either by medical personnel or by parents, as a finding to which abortion is the most logical respone. nonetheless, although this is my belief, it is only my belief. I would not want to see it become something more than belief — something more like a coercive social expectation (1996: 79).

This scenario got worse with the introduction of Pre-implantation Genetic Diagnosis (PGD), which is a technique that allows embryos to be tested for possible abnormalities at a very early stage before being implanted in the womb. The technique is attempted in association with in-vitro fertilization (IVF) .The procedure allow women or couples who have definitive knowledge about their risk of having a child with a serious impairment. Both PGD and prenatal screening aim to detect disabled individuals so that they can be destroyed — by being thrown away at the embryonic stage, or by being aborted if they are older. The two kinds of diagnosis are essentially the same, the only difference being the age at which the disability is detected. The purpose is to have a child that does not carry that any genetic abnormality. PGD may exacerbate the eugenic features of prenatal testing and make possible an extended form of free-market eugenics. Disability has always carried eugenic potential because impairment of any kind causes society immense disquiet. Despite legislation, the inclusion of disabled people remains an on-going source of struggle. Disabled people are thus aware of the fact that they are likely to be targets of any philosophy that sees ‘perfection’ as a value guiding human life. It is a well-known fact the origin of the eugenic movement was Francis Galton, who first used the word in 1883. It comes from the Greek root meaning ‘good in birth’. eugenics was a fall out of Darwin’s ideas on evolution. It was also a ratification the dominant positivist philosophy, which argued, that science had the answers for all the problems that society experiences. eugenics, thus, showed the way in which people could scientifically assist a more desirable evolution of their own species. Clearly, PGD though

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couched in a different language is clearly eugenic as the underlying assumption for its origin is that disabled people are ‘mistakes’ who should not be allowed to be born. In his book Brave New Worlds, journalist Bryan Appleyard says: so what we face here is, in fact, the opposite of state-sponsored eugenics. This is the eugenics that happens when the state is specifically excluded from reproductive decisions. It is the eugenics of the free market, and it results inevitably from a combination of the current quasi-religious faith in the absolute virtues of unfettered free markets and the rapid growth of the new genetic knowledge. The whole point is that we are about to be deluged with offers of choices . . . The free market takes over where nazism left off. However in my view state is involved in legislations that give permission to abort/ destroy disabled foetuses/ embryos (1999: 86).

Also, it fits in with what Tom Shakespeare calls strong and weak eugenics. whereas, ‘strong eugenics could be defined as populationlevel improvement by control of reproduction via state intervention’, weak eugenics is ‘promoting technologies of reproductive selection via non-Coercive individual choices. It is motivated by the medical judgment that disabled lives involve unacceptable suffering’ (Shakespeare 1998: 669). In such a situation it is quite possible that negativity associated with the disabled coupled with market forces create a eugenics in which it seems that best can be selected from the multiple embryos, based upon the parents’ choice of criteria that could range from sex, health appearance, intelligence etc. It is thus a step towards producing designer babies. In one sense such selections are refined forms of sterilization of ‘undesirables’, a policy that had widespread support leading to the nazis developing their programme for systematic killing of disabled people. Some 100,000 disabled people had been murdered by 1941. Forced sterilization of people in mental institutions is not an unknown phenomenon. I discuss the case in Pune in Chapter Four. I also feel that genetic manipulation does not hold good in a country where sex selection is rampant. while on one hand the abortion is a woman’s personal choice, it is crystal clear that such choices are influenced by both the prevailing constructions as well as the economic support system within which the individual is located. In fact according to many feminist thinkers (rapp, 1999) very few cases fit the liberal feminist ideal of one woman making a personal choice. Her work documents the fact that pregnant women are

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influenced by a wide spectrum that includes gynaecologists, genetic counsellors and views expressed by society. However, we do recognize that sex selection is legally and morally impermissible. In fact the recognition that gender is socially constructed has led to this realization. However the fact that disability too is a social constructions warranting an in depth interrogation escapes notice. As Sophia Isako wong maintains, ‘there are surprising parallels between the social construction of Down Syndrome as a disability and the deeply entrenched institutionalization of sexual difference in many societies’ (2002: 89). Thus, biological determinism stems from gender and disability. However, the kind of opposition that we witness to sex selection is not same as that of disability selection. Framing of one selection in terms of choice and another in terms of necessity poses serious questions. The eugenic choices are guided by the value that is attached to the disabled people’s lives coded as a ‘tragedy’ the view often reflects the feeling that it would have been better if that person had never been born. Such perceptions often result in parents opting for screening. In one sense it is very offensive to people who live with a disability and who are then given the feeling is that had this technology been available before their birth, they too would have been allowed to come into this world. The economic benefits of both PGD and screening are perceived as having economic benefits for the community because it is cheaper than providing adequate services for disabled people. Also lack of adequate support becomes a deterrent in thinking about the possibility of having disabled children. Thus, the use of genetic technology in its different forms in so-called ‘preventive’ measures is, for many disabled people, a manifestation of the essence of the personal tragedy model that says, ‘better dead than alive’. Given the fact that disability is negatively constructed, it becomes increasingly difficult for individuals presented with difficult choices to go against the prevailing normative hegemony. In a free-market eugenics, no one gives a playing field for a positive identity to the disabled children but only a discussion of eliminating disabled people. Unregulated reproductive techniques offer the perfect tool to foster this new world. The fact that disability is given a negative connotation in use of pre-implantation technology becomes clear when we realize that deaf parents asking for an implantation that would secure a perfectly hearing child is not considered pathological. However, the converse is not true thus it is ethical to use technology

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to screen out deafness, but unethical to do the opposites the reason is that deafness as any other disability is constructed as negative and choice of one set of parents is upheld. In both the cases, disability is rejected/desired through the framing of a genetic technology. However, the assumption is that parents will undertake PGD precisely for the purpose of avoiding genetic disorders. Consequently, they are hardly likely to insist upon implantation of an affected embryo. However, if the woman is infertile, there might be possibility of having very few embryos availability. In such cases where implantation of an affected embryo is the woman’s only chance of pregnancy, birth of a disabled child might be acceptable. It is significant that we recognize that the stigmatization that disabled people experience in our society is likely to be intensified through the misleading assumption that once the genetic information is uncovered, disability will totally disappear. It is dangerous in the sense that the person is merged with from the medically or scientifically diagnose the condition. Genetic information has the possibility of being an overpowering way of stigmatizing labelling people with disability have as yet experienced. The information on genetics intends to tell us what someone is ‘really like’, thereby dismissing us of the need to look for signs, symptoms or other overt characteristics. In terms of genetic labels, human difference will unlock the gate to extreme form of stigmatization. The argument that we allow parents to choose expensive private schools for their children and consequently there should be no objection to allowing market forces to determine the genetic make-up of future generations is unacceptable, since it suggests that the existence of one social problem is an excuse for creating a worse one. Furthermore, giving children genetic advantages is qualitatively different from giving them environmental advantages; it is not just ‘more of the same’. If PGD were to become widely used to select many of the characteristics of a child, this would encourage existing tendencies to view babies as consumer products. when children are reduced to designed artefacts, the long-range implication will be on the relationships between parents and children. In fact already one hears about the instances where PGD has been used to identify and deselect embryos with a predisposition of developing a late-onset condition such as breast cancer. The dividing line between what is permissible and non-permissible is very complicated. The fact that such decisions are often couched in language of individual choices

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is extremely threatening. while it has not caught on in India but instances from the west do indicate the other problems inherent in these arguments. For instance parents suing their doctors because they did not tell them that their child might be born with a disability. when Leilani Duff was born on 29 August 2003, her parents learned that her spinal cord was exposed — a condition known as spina bifida.8 They later learned that she would likely be paralyzed below her knees, and that she might have learning difficulties. Later the obstetrician was sued with a claim that the doctor failed to tell them about a state-mandated screening that would have tested for conditions such as spina bifida while the woman was pregnant. Similar lawsuits such as the one reported in France are happening more often in the US, because prenatal screening is becoming more sophisticated. The suits are also causing more doctors to recommend abortion in cases where there is any doubt that the child will not be ‘perfect’. Thus, the impact would be reflected in not only lesser support for the disabled because they are viewed as ‘mistakes’ but a lower incidence of certain impairments could indeed mean that there is less medical interest in working on the possible relief measures that can be provided. However, the concern about loss of support is one connected with the political visibility of disabled people and the fact that whether they count as a vote bank. Also it is well known that genetic determination is complex. Thus it is very possible that a major fraction of the genetic predisposition to common diseases and characteristics is due to less than 10 genes. In fact there are already examples in the scientific literature of genes that are claimed to have an important effect on hair colour, height and athletic ability. It is already possible to test for hundreds of different genetic variations and one time using gene chips. Secondly, in the context of PGD, where parents are selecting amongst multiple embryos, parents may nonetheless demand the genetic data, in order to pick the embryos with the ‘best’ genetic profile, whilst accepting that genetic testing provides no guarantee or even very accurate prediction of outcome. The availability of multiple embryos creates an in-built imperative to select. Also, as a technique, PGD is too invasive and demanding of women since it involves IVF. even if advances take place and it becomes less problematic for women, PGD has the potential of becoming an attractive option for fertile couples concerns to secure the ‘best

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genetic pool for’ for their child. This yet again ratifies the eugenic potential of PGD with the accompanying. Under prenatal testing, such eugenic tendencies are restrained to some extent by an ethos of non-directive counselling and by the fact that the termination of pregnancy is traumatic and repeated pregnancies are difficult. neither of these factors is present in PGD and in fact there are opposite tendencies, which radically enhance the eugenic potential of PGD, compared to prenatal testing. The availability of surplus embryos creates a powerful imperative to select and choose between potential lives. If sex selection has not been controlled who is to say that certain trivial and even cosmetic conditions, such as cleft lip, will not be under the scanner.

Need for Regulation Since the eugenic potential of PGD is greater than that of prenatal testing, it would require more stringent regulations. My submission is that the need to restrict the use of PGD should be explored in greater detail. A study done by SAMA (2006) reveals that techniques such as PGD have to be analyzed carefully in terms of their implications for women’s lives. Genetic counselling is one area that needs to be developed. Sometimes parents do not have exposure to human beings who live with difference that is codified as disability. As Troy Duster (1990) has written, Genetic counsellors are probably, as professionals, indeed neutral, if this means that they do as much as possible not to communicate their personal prejudices and opinions about whether a couple should take a chance or not or whether they would recommend living with a disability or not, etc. However, the individual neutrality of the counsellor is not the issue. It is, in fact, the machinery of a screen that has been erected. even if one is neutral about whether or not one uses the advice or technology, etc., the simple fact that the screen is in place communicates a powerful message that something is wrong with the disorder for which the screen is in place. Thus once the test is available and a woman decides not to use it, if her baby is born with a disability that could have been diagnosed. It is no longer an act of fate but has become her own fault.

non-directive counselling which gives parents access to accurate information directly from disabled people about the reality of living with the impairment is thus extremely important.

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It is clear that parents will find PGD less stressful with the aim that children who have genetic disorders can be avoided and so are hardly likely to insist upon implantation of an affected embryo. However, such a situation is quite possible when it comes to infertile women. The SAMA study indicates the stigma attached to infertility in India and ironically it is only when the chances of having a perfect child are minimized that parents might compromise and decide to have a disabled child. Such a situation is comparable to prenatal testing discovering a genetic disorder. To constantly place the burden of impairment on the individual is a misrepresentation of how we all live our lives. All of us live mediated, constructed and socially defined lives. Therefore, we must move away from technologies that insist on seeing everything as the problem of the individual.

indiViduAl choice: A Myth oR ReAlity An emphasis on individual rights does injustice to the complexity of both women’s as well as disabled person’s experiences. Let us consider the scenario that disabled people confront a society where being normal is hegemonic. Considering that disability is defined in medical terminology and more so because there are powerful normative standards, choice can be anything but free. Also, the category disability is not a homogenous one. There are people with a range of different disabilities, different life experiences, different material needs, and different ideological perspectives. Although technological developments enhance the ‘sense’ of choice, in reality they tend to push decisions in a predictably socially constructed direction. In contemporary India, technology of prenatal determination of foetal characteristics has disadvantaged both girls and the disabled. research attests to the fact that with the advent of these technologies more and more pregnant women are encouraged especially by the physicians/doctors to go in for prenatal screening. In such a context, the pressure on women to exterminate such threats is immense. As Veena Das (1986) has argued, this decision in itself is by no means based on autonomous choice often implied in discussions on the morality of abortion. Moreover, as Das points out, it is not inscribed in the nature of things that a physically or mentally retarded individual should have a poor quality of life. It is the great value that is accorded to autonomy and competition that makes it a self-evident fact.

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An additional issue that needs to be borne in mind is that new technological innovations have already made it possible to select an embryo rather than to abort an unwanted foetus. The abortion debate may thus become irrelevant to the issue at some not so inconceivable future. The critical question then concerns the issue of choice. As a recent report on assisted reproductive technologies by SAMA indicates, It is difficult to distinguish between latent choice and social choice shaped by family, market, and other agents. Unless we draw this line, there is no limit to theoretical choice and everything, including sex selection, can be justified in language of choice. what society does is to promote one variety of choice while silencing the range of options. The society closes the option that women can be happy without children [or daughters, or disabled children].9

while individual choice must be promoted, what needs to be addressed is that this choice takes place in a particular social space in which disability has a negative connotation. In this context it is often difficult to say how much real choice is involved. If you happen to choose a disabled child it appears to be illogical and ridiculous. As Adrienne Asch has written (quoted in Lisa Blumberg), ‘suppose Down syndrome, cystic fibrosis or spina bifida were depicted not as an incalculable, irreparable tragedy but as a fact of being human? would we abort because of those conditions or seek to limit their adverse impact on life?’.10 To communicate that, ‘You must have a termination,’ or ‘you must have a test’, without analysing the implications needs to be problematized. we need to provide mothers and fathers with multiple accounts of how they might lead a life with a disabled child. As Jason kingsley, a 17-yearold boy with Down’s Syndrome, puts it, I have a disability called Down syndrome. My bad obstetrician said that I would never learn and send me to an institution and never see me again. no way Jose! Mom and Dad brought me home and taught me things. He never imagined that I could write a book. I will send him a copy of the book so he will know. I will tell him that I play violin, that I make relationships with other people. I make oil paintings, I play the piano. (kingsley and Levitz, 1994: 27–28).

what needs to be clarified is that these choices are taken in a context where disability is accepted as an oppositional category

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to normality. Disabled lives are, thus, not considered worthwhile. whether the argument stresses suffering or economic cost it is rendering disability in purely medical terms. Such a framing misses the socially constructed nature of disability. The fact that some part of the body or mind is limited in their functioning is not the problem. However, the barriers that exist in a society are the problem. For instance, stairs without elevators or ramps, information in Braille or digital format, augmentative communication and more important people’s negative attitudes. These represent a complex form of institutional discrimination, which in our view is as deep-seated in our society as gender biases, caste structures and heterosexism/ homophobia. Thus, the ‘cure’ to the problem of disability lies in the restructuring of society rather than the medically based ‘cures’. recent medical advances have created a scenario that that the number of abortions of children with Down’s Syndrome will increase as a result of this new screening technique. weiss (2000) suggests that the discontent of parents at the birth of the child who ‘fails to meet a socially defined construct of perfection can result in a parent’s choosing, at least temporarily, to ignore the child’s best interest’ (2000: 1142). Thus, instead of institutions, now the children would be systematically aborted. when these children are viewed as having no advantageous value to society, elimination of them is tolerable. The well-known disabilities rights activist Marsha Saxton (1988), who has spina bifida, has protested against genetic testing for any inherited traits as the tendency is to only evaluate humanness through utilitarian principles of worthiness to the society. Her continuous resistance very eloquently sums up the sense of outrage: The message at the heart of the widespread selective abortion on the basis of prenatal diagnosis is the greatest insult: some of us are ‘too flawed’ in our very DnA to exist; we are unworthy of being born . . . fighting for this issue, our right and worthiness to be born, is the fundamental challenge to disability oppression; it underpins our most basic claim to justice and equality-we are indeed worthy of being born, worth the help and expense, and we know it! (ibid.: 391).

elsewhere in the book I discuss the role played by capitalist economies in casting disability as a deficit. In fact a very strong conviction of the social understanding of disability underscores the role played by the capitalist economies in casting disability as a deficit. The image of not being able to contribute to production constructs

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the disabled as dependent, which is the root cause of exclusion. even for a caring mother the realization that her child will never be able to give expression to all her/his needs is a tough one. As the narratives above indicate many will chose not to go ahead with the pregnancy in such circumstances. It is possible to argue that a woman’s choice of aborting a disabled foetus is constructed within the dominant notions both of motherhood as well as of disability. To feel fulfilled as a mother she must produce a healthy, non-disabled baby. Any deviation will produce not only dissatisfaction but also increase her burden and result in mother blaming. There should therefore be no difficulty in empathizing with the woman who selectively aborts a disabled foetus. The difficulty, both logical and ethical, arises when a similar argument is used for the abortion of female foetuses. Mothers report that a woman without sons is barren (banjh) and life without a son is a life spent in darkness. They fear husbands will leave them and indeed they do (Johri, 1999). If the mothers’ desires are not the sufficient grounds for aborting female foetuses, the same must apply to the case of disability. Clearly the notion of individual choice is untenable. My contention therefore is that we need to question whether it is right to promote the availability of prenatal screening and PGD without first making a major effort to re-educate the public, including prospective parents, about disabled people’s lives, and improving financial and other support for disabled people and their families. There is no logical reason for making a distinction between testing for disability and testing for social, physical or psychological characteristics. If parents are allowed to choose to destroy a child on the grounds that s/he has a disability, there is no logical reason for not allowing them to treat in the same way a child considered ‘undesirable’ for any other reason. An attempt to ‘design’ babies to any particular specification is morally revolting and reinforces the notion that there is an ideal that humanity must aspire for. Such a position looks at difference as deficit. Such an approach however is like a slippery slope to other forms of selection, and thus eventually to a world of a new ‘designer baby’ eugenics? If new technologies make it possible to fulfil desires and satisfy preferences, is that reason enough to use them? More precisely: If we can, does that mean we ought? If you are going to be consistent about choice, then why stop at impairment? However this then runs counter to the idea that women can never be conscious agents. To quote Jennings, it actually provides an ‘illusion of freedom’ (2000: 130). Then how are

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we to make sense of such a scenario. regretting choices that women are compelled to make is not the same as saying that they are participating in discrimination. Instead it points to the ways in which woman too are delimited by the burden of knowledge. our fantasy might be that women should avoid selection. However, it is unjust to demand that they should not abort when the problem lies not with their individual choice, but in the context in which choice is taken. what is perhaps required is an analysis of screening that can reflect on the social values and structural inequalities that promote the choice. Therefore if prenatal screening is to be made available, it must be accompanied by efforts to re-educate the public, including prospective parents, about disabled people’s lives. It has to be coupled with efforts to improve financial and other support systems for disabled people and their families. If the danger of increased prejudice is real for sex then this danger is just as real for ‘disability’. our submission is that legislations are often responses to complex moral issues. Any proposed policy necessarily reflects society’s evolving discovery of discrimination against the specified groups. Moreover genetics is extraordinarily complex. replacing or deleting a single gene can have unforeseen consequences. our contention is that there is a critical need to interrogate the silence that has encouraged the reutilization and rapid growth of prenatal testing. To my mind a public debate is extremely important to understand whether elimination of disability is a legitimate solution. recent judgements in western countries have penalized parents and doctors for allowing disabled children to be born. Such a scenario is not unthinkable in the globalizing times of today. Therefore, it is critical that I question the context in which choices take place. The ethics of what appear as free choices needs to be articulated. There is a need for greater public debate. The disability community is so involved with issues of survival that implications of new reproductive technologies are hardly ever discussed. obscuring or limiting the need for public debate the legitimization of disability has stalled selection. Perhaps, it would be wise to heed Marcy Darnovsky, who reminds us: this constellation of technological, economic, cultural, and ideological developments has revived the issue of sex selection, relatively dormant for more than a decade. The concerns that have always accompanied sex selection debates are being reassessed and updated. These include the prospect

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that selection could reinforce misogyny, sexism, and gender stereotypes; undermine the well-being of children by treating them as commodities and subjecting them to excessive parental expectations or disappointment; skew sex ratios in local populations; further the commercialization of reproduction; and open the door to high-tech consumer eugenics.

The belief that marginalized communities need to be empowered is equally true for both women as well as disabled. Peter Singer, who recently was seated in an endowed chair at Princeton’s Centre for Human Values, said, ‘killing a disabled infant is not morally equivalent to killing a person. Very often it is not wrong at all’. In May 1973, James D. watson, the nobel Laureate who discovered the double helix of DnA, granted an interview to Prism magazine, then a publication of the American Medical Association. Time later reported the interview to the general public, quoting watson as having said, If a child were not declared alive until three days after birth, then all parents could be allowed the choice only a few are given under the present system. The doctor could allow the child to die if the parents so choose and save a lot of misery and suffering. I believe this view is the only rational, compassionate attitude to have.

In January 1978, Francis Crick, also a nobel Laureate, was quoted in the Pacific News Service as saying ‘no new-born infant should be declared human until it has passed certain tests regarding its genetic endowment and that if it fails these tests it forfeits the right to live’. In a Jeremiah project, concerns about disability were very critical. A medical study in France indicated that 42 per cent of women, if they gave birth to a severely deformed baby, would favour killing the child, 20 per cent said ‘no’, and the rest were undecided. Since many countries including India allow testing and consequent aborting of disabled babies , the debates are never engaged seriously. As roger S. Gottlieb a philosopher with strong Marxist leanings, suggests, whether or not someone is disabled is partly a function of what resources are available at a given time, what conveniences are ‘standard’ in a society, and how are we expected to behave . . . The nature of paraplegia will change when wheelchair ramps are as standard as elevators . . . Similarly, the question arises: what changes are to be made-the institutional

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equivalents of wheelchair ramps-in equalising the participation of caretakers of the disabled to make our society more just? (2002: 231–32).

As part of a campaign aimed at the Human Fertilization and embryology Authority, the Uk-based bioethics group Human Genetics Alert writes, ‘If we allow sex selection it will be impossible to oppose “choice” of any other characteristics, such as appearance, height, intelligence, et cetera. The door to “designer babies” will not have been opened a crack’.11

MotheRhood issues And disAbility: soMe thoRny issues within the Indian scenario, motherhood is thought to be the most significant aspect of the woman’s identity. However for the disabled women this is ridden with number of problems. within the dominant Indian ethos, says Sudhir kakar, whether her family is poor or wealthy, whatever her caste, class or religion, whether she is a fresh young bride or exhausted by many pregnancies and infancies already, an Indian woman knows that motherhood confers upon her a purpose and identity that nothing else in her culture can. each infant borne and nurtured by her safely into childhood, especially if the child is a son, is both a certification and a redemption (kakar, 1978: 56).

However, it is also a culture which privileges only legitimate motherhood. Any desire to have a child out of wedlock is deemed to evoke further stigmatization. However, disabled women are denied the possibility of even this very prestigious role, as marriage and motherhood are both difficult aspirations. I recall a fellow disabled reshma’s story. Her parents were ecstatic when a sighted man offered to marry her. notwithstanding her ambivalence, she was expected to thank God and worship the boy who was benevolent enough to decide to marry her. Her parents visited holy shrines to express their gratitude. It was only then that reshma realised the extent of their apprehensions regarding her disabled existence. The family that till then appeared to be an ideal family suddenly lost its charm, as reshma understood that all along she had been a burden for them. notwithstanding her well-paid job, her worth was in terms of whether she could get married. Consequently, her husband

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was constructed as kind and she the recipient of his selfless gesture. Says reshma, ‘I was told over and over again that motherhood was not for me. what if the child also turns out to be blind like you? Haven’t I had enough to be saddled with a disabled wife? Don’t make it unbearable by imposing a disabled child on me.’ Despite the fact that reshma is a well-established professional, she finds herself unable to fight this battle. Says reshma, My husband becomes hostile the moment I express my desire to become pregnant. Despite the precautions, it so happened that I became pregnant. on realizing that I have conceived, his mother-in-law and the extended family forced me to abort the child. The gynaecologist was more than happy as she too considered disabled mother would not be in a state to bring up the child. now I have accepted fate but sometimes I want to break this trap. I have even got all the tests done to assure him that my disability is not genetic, still he remains adamant.

The rationality of stereotyping of disability and role of genetics in such a scenario is hardly ever questioned. As I have discussed in the earlier section, the non-disabled women are blamed for giving birth to girls, while it is the male genes that determine certain status in life refuse to even admit that they are disabled. while it is perfectly justified for the feminists to engage with the issues of natural and constructed motherhood, the pain and agony of women like reshma goes unheard. These issues of marriage and motherhood are further accentuated by the disengagement from the disability discourse of those few successful disabled women who manage to find careers or happy marriages. Their disassociation implies a negation of disability, as very few contest the dominant constructions or become advocates of their life situation. The sense of internalized oppression that it creates is too difficult to handle. renuka, who is a well-placed doctor abhors the idea of ever being called disabled. According to her, ‘everyone has problems, so why should I highlight my disability. I have always tried to overcome the obstacles. I do not wish to become a story for the press’ (pers. comm.). on 21 July 2009, in a landmark decision, the Supreme Court (SC) of India allowed a 19-year-old mentally challenged orphan girl to carry on with a pregnancy resulting from a sexual assault.12 The Punjab and Haryana High Court ruling had earlier ordered medical termination of pregnancy (MTP). However, the judgement has been understood in a different ways, as it raised more questions than it

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has answered. The fact that the girl had been raped in a governmentrun home for destitute women and is now pregnant created a debate. Does a 19-year-old with the IQ of a nine-year-old have the right or the ability to make a decision about her unborn child conceived through rape? The resulting pregnancy and the question of whether the foetus should have been aborted ‘in the best interest’ of the girl has got lawyers, administrators, jurists, and disability activists across the country in a tizzy. Some of the activists feel that if the woman wants to keep the baby she should be allowed to do so. In the context of the Un rights of Persons with Disabilities Convention, the civil society has a right to her choice according to Article 12. The national Trust for welfare of Persons with Autism, Cerebral palsy, Mental retardation and Multiple Disabilities filed an affidavit taking responsibility for protecting the best interests of the woman, including assistance with childcare. It was decided that the trust would ensure proper care for and supervision of the woman and her child by coordinating with the Chandigarh administration. As an activist, I too consider the judgement as historical in context of the stipulations on disability selection in the PnDT act. For me a serious concern is the issue of consent. notwithstanding the fact that issue is contentious and there are loopholes in the judgement, the reality is that for the first time, it takes the consent of a intellectually impaired woman into account in determining whether she can deliver a baby.13 A senior advocate who has been in favour of disability issues reacts negatively to the judgement, as a person opposing the verdict. As disability activist and lawyer Colin Gonsalves argues, the problem lies in determining her point of view. The law requires that she be supported in every way possible so that she makes an informed decision. If the woman’s point of view can’t be determined, then the guardian or the court must take a decision in the best interest of the woman. The Supreme Court has relied mainly on the fact that this girl, who is mentally retarded (sic), ‘consented’ to bearing the child. It is interesting that as soon as the headlines of print media as well as television circulated, the judgement has created chaos with disability activists divided, civil society and specifically the women groups looking the other way and the Chandigarh administration to terminate the girl’s pregnancy. My concern was that the complexity of the decision was not clearly comprehended. The court’s deliberation however, focused on two factors into account. Firstly, it interpreted the Medical Termination of Pregnancy Act, 1971, as respecting ‘the

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personal autonomy’ of mentally retarded persons above the age of 18, stating that while, under the Act, a guardian can make decisions on behalf of mentally ill persons, ‘the same cannot be done on behalf of a mentally retarded person’. Secondly, since the Chandigarh girl was close to the 20-week limit for terminating a pregnancy when the matter reached the SC, such a late abortion could have endangered her life.14 Some disability activists, like Jeeja Ghosh, a highly educated woman who herself suffers from cerebral palsy, is not just disturbed, but actually angry with the judgement: This case has left me very disturbed as a disabled rights activist and as a disabled woman. we have left the essence of the movement behind. She was not supported to make an informed choice on whether to carry on or terminate the pregnancy. I strongly feel that we are imposing our views on her to satisfy our ego and to celebrate our victory in the disabled rights movement. I ask my fellow women’s rights activists: would any of us have been willing to carry on with a pregnancy conceived out of rape? (Outlook, 2009)

Though couched in the language of impartiality, the former question is riddled with prejudices and stereotypes and reeks of egotistic Indian middle-class values. If middle-class parents would abort a disabled daughter’s baby due to difficulties or trauma (camouflaged as concern for traumatized and fragile woman to feel ethically selfrighteous about their decision), then what makes that kind of thinking compelling for others to whom avoidance of inconvenience may not be the highest priority? In fact it was amazing that those many voices who have asked for the abortion for the girl in the context of rape. An advocate of disability rights, SC Vashishth says, Any Indian parent, family or woman must have preferred an abortion at the first instance for it was a forced pregnancy out of a rape. MTP allows termination on this ground alone! Its only rights groups who have without understanding that the girl was never assisted properly to make an informed choice, made the issue in favour of life — a life with which they will never be concerned with in future.

The patriarchal tone of the voice is crystal clear. Albeit the fact that life is not going to be easy for the mother and the child, are we therefore not going to create any change? Shruti Pandey, a human rights lawyer from Delhi, admits that this is a case that is ‘so grey’

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that case is not about abortion per se. rather India’s legal strictures recognizes and protects the agency of a woman to take decisions for her life and body, especially all its nuances when the woman is a person with intellectual mental impairment. I know that the state is not very friendly to the disabled people, especially women; won’t we evaluate the decision of an intellectually impaired woman? I know that rape is a heinous crime but are we to join the rapist, as women who have been raped should not be allowed to have a child. Medical experts and judges are unconsciously susceptible to these prejudices. I think the understanding of intellectual impairment needs to be understood. within the discourse of Un convention, it has been comprehended that persons with intellectual disabilities were mistaken for being incapable to decide for themselves, or being incapable to be educated or to live a life equal to others. People who consider themselves, as non-disabled always highlighted what the person with a disability is not able to do. However, the shift in attitude is not easy despite the rhetoric of human rights. For me, we need to emphasize that all people with and without disabilities as equals before the law. And whenever persons are not able to do something on their own, they should be given the right to make use of a specific service in this field to support them. I do understand and accept that Shikha’s case could have been supported better. However, my contention is that why do the well meaning advocates imagine that intellectually impaired persons are not capable of living in normal social conditions and always need the demanding supervision of an institutionalized environment. The interrogation of institutional upbringing highlights the fact that additional social stigma denies the opportunity of routine living for the intellectually impaired. I think the assumptions of the civil society regarding Shikha are tricky the understanding that sexual abuse will be avoided if a caring family is there is indeed an underestimation. As an activist, I have come across many mothers who are conflicted on the hysterectomy issues of disabled women, especially the intellectually impaired. They do know that in absence of support systems, sexual abuse is a not always however we tend to legitimize the abuse, as pregnancy is a more serious concern. For this reason we need to respect the wishes of any disabled woman, no matter how muddled her understanding is to the well-intentioned advocates. My interactions with the defender were enough in saying that the young girl wants to be a mother. Maybe, there are multiple

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interpretations, I would still go with the fact that being a mother in India’s stipulations under the convention or without the convention has to be justified and appreciated. why do we want to deprive the fundamental rights and freedoms to the disabled because there are contingencies and the contingencies are there because we live in a normative society. If motherhood is a right guaranteed to the non-disabled woman, then it is only just and reasonable that the State should provide support to the disabled woman and facilitate her right to motherhood. The argument that she would have no resources to provide for the care and upbringing of the child has to be rejected, at least on the ground that the State is expected to provide her with adequate support and care. even otherwise, the State should be obliged to provide for the mother and the child especially considering that the rape occurred in a shelter maintained by the State.

To me, the issues raised by this case go far beyond the legal responsibility to provide economic sustenance for the care and bringing up of mother and child. The issue is one of respecting the personhood of the individual in question and ensuring that she is able to exercise her fundamental rights. I would be accused for militant and far-reaching conclusion. To me, disability with all its multiple manifestations is an issue that pushes us to reorganize, reposition and improve our own attitude of morality, injustice, power, autonomy and all that we usually associate with being a human. It is true that the actual situation of the girl may never be fully cared for and will not get support from both the government as well as the activists. Both as a disabled woman and activist I do understand the anguish of the girl, but the judgement is the only vehicle which disabled women can contest the serious violations of their reproductive rights. The construction of disability selection as an ethical imperative, with moralistic overtones is inhumane. Since it uses the suffering as well as quality of life arguments, it impinges upon the choice with the result that the choice of giving birth to a child is seen as an irresponsible act. My contention is society has to rethink discursive practices so that a wide range of subjectivities that can ultimately emerge.

MeRcy KillinG:to die oR to liVe Debates in India about concerns such as mercy killing have not really taken off the ground . They seethe, simmer only to die down until any

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petition reaches the court. The disability advocacy groups fighting for continued existence have no time for such queries as the harsh realities of poverty, education, employment etc are still burning issues for the disabled. However, now the voices are becoming vociferous. There are now many instances where either the President of India or the state administration have been confronted with issues of mercy killing. The legal strictures have had to intervene does not have a clear legal sanction for mercy killing or euthanasia. The closest the issue has come to be addressed is in Section 309 of the Indian Penal Code, 1860, which states that an attempt to suicide is a criminal offence. while it is considered as an offence under the same section, any person assisting an attempt to commit euthanasia can be accused in Section 306 of IPC for abetment to suicide. Generally, the latter term is the intentional killing by act or omission of a dependant human being for his or her alleged benefit. euthanasia has its origin from a Greek word — the terms ‘eu’ means well and ‘Thanatos’ means death — that is, easy death (good death). A form of peaceful or dignified death which is specially advocated when life becomes a punishment and dying comes as a relief. In the west the countries that advocate ‘mercy killing’ are the netherlands, northern Provinces of Australia and also some states in the United States of America. The netherlands has become the first country in the world to legalize euthanasia in April 2002. The bill allows doctors to kill patients with terminal diseases who are suffering ‘unbearably’ if they request it. earlier, oregon became the only state in US to pass the ‘Death with Dignity Act, 1997’. As of 2009, some or the other forms of euthanasia are legal in Belgium, Luxemburg, the netherlands, Switzerland, Thailand, and the US state of oregon and washington. Two organizations — Society for the right to Die with Dignity, based in Mumbai, and Live well-Leave well Society, based in Bangalore — are valiantly fighting to make it legal. Society for the right to Die with Dignity was founded by Minoo Masani in 1981 and works on basic belief that inherent to the right to live with dignity is the privilege to die with dignity.15 ‘As a society, we look to spread awareness about euthanasia. we are also making substantial efforts to get Living will legalized,’ discloses Dr nagraj G. Huilgol, oncologist and secretary of the Society.16 while he has not prepared a Living will himself as it isn’t legal yet, he has made sure all his near and dear ones know his views. on the other hand, A. S. rawat is the founder of Live well-Leave well Society and has

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drawn up a Living will seeking a painless death.17 Back in 1999, rawat had in a writ petition sought the help of karnataka High Court in upholding his right to execute a Living will and seek its enforcement. Praying for a legal empowerment to his request that when there is no reasonable prospect of recovery from illness, it be allowed to discontinue unwanted medical treatment and not be kept alive by artificial means. The High Court struck down the plea saying ‘the petitioner was being sentimental’. while Dr Huilgol lays the onus on the individual sufferer to decide the course of action, others believe that he/she could be taking a wrong decision. Any sufferer could be making a poor decision. If the patient were in extreme pain, his desire to die would be greater so that he could relieve his pain. So his decision is influenced by his state of depression or condition. If a person does express his wish to die, then he should be counselled. After the treatment the patient may no longer desire to die.

Asserts Venkat Iyer, founder president of Courage India, a Cancer Victim Support Foundation, nanavati Hospital, Mumbai, interacting for an appeal by farmer Jeet narayan and his wife staying in Bashi village of Mirzapur district (300 km from Lucknow, a city in Uttar Pradesh, India) sent to former President Pratibha Patil’s the permission for the mercy killing of all their four sons who have muscular dystrophy, a genetic disease that has confined them to bed. The children are 16, 14, 11, and 10. Similarly, quoting the case of the Florida resident Terri Schiavo,18 the relatives of the patient, which include Tarakeshwar Chandravanshi’s husband and son filed an appeal so that kanchan Devi, a woman in coma for five years in Bihar should be allowed to die.19 Similarly, kerala High Court said ‘no’ to the plea of B.k. Pillai who had a disabling illness, to die. The petition was sent by the husband to the state governor asking for the mercy killing for his wife kanchan Devi. The petition in the court was rejected, forcing him to appeal to the Governor. The woman, kanchan Devi has been in a coma since 1999 and her husband has run through all his property and other financial assets in taking care of her (The Hindu, 2005). The fact that disability and illness are intersected when an ostracized AIDS couple pleaded for euthanasia asked the president to allow them and their daughter to die through euthanasia as they were being harassed in their village. euthanasia or mercy killing is

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banned in India. ‘we are tired of going to (the) administration . . . That’s why we have sent a plea to the President to grant the entire family euthanasia’, says Pandey, who has sold a quarter of his farmland for treatment. ‘we are tired because of the deadly disease and atrocities of the villagers. They enter our house and beat us and want to throw us out of our house’, he added (The Times of India, 2007). The fact that family cannot get any support becomes a serious issue in living a dignified life. Though there have been many petitions, the debate started with a 25-year-old man Venkatesh who petitioned the Andhra Pradesh High Court in 2004 seeking euthanasia while on life-support in a Hyderabad hospital. His body was wracked by a debilitating muscular disorder. Though the Supreme Court was not called upon to examine the issue directly but in the case of Venkatesh, on 17 December 2004 (The Times of India, 2004), the court turned down his plea. Venkatesh died soon after. Venkatesh’s case threw up the contentious issues surrounding mercy killing. Since donation of organ will imply euthanasia or mercy killing, the courts considered the plea as illegal.20 Since there aren’t any laws on mercy killing in India, the only legal way was to interpret the Transplantation of Human organs Act, which was passed in 1995. The law allows harvesting of organs only in the case of brain-dead patients and Venkatesh wasn’t in that category. However, because of his death, the ethical questions that should have arisen got sidelined. For instance, the media probably is not aware of conflict that was generated in the minds of many disabled people, particularly to those who have muscular dystrophy. while Section 309 of the IPC says that attempted suicide is a criminal offence, it keeps mum on euthanasia. The irony is that it is the fear of misusing the law, which is holding back many experts from legalizing it. If euthanasia is made legal, there always will be those who will try to bend the law and exploit vulnerable disabled people. In my mind, the critique of the Transplantation of Human organs Act, 1994 (with stipulations for hospitals that can perform organ transplants), is pending. It defines a legal donor and nature of monitoring agencies in authorization committees and appropriate authorities. It also paves the way for cadaver donation in cases of brain-stem death and presumed consent and for strict penal provisions of imprisonment up to seven years for offences under the Act.

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Historically, 1984 was a year in which the president of the Indian Society for the right to Die with Dignity, Sadanand Varde moved a bill for mercy killing in the Maharashtra legislature. Varde, then an MLC, and later education minister, says the bill itself faced ‘involuntary euthanasia’ when he allowed it to lapse since the House was not in favour (The Times Of India, 2007). Similarly, in 1999, four senior citizens in kerala had filed lawsuits asking for the legalization of assisted suicide in the country. In 2000, a division of the kerala High Court had held that voluntary termination of one’s life either by those who are frustrated or those who had achieved their life’s mission would both amount to suicide. while euthanasia is clearly illegal in India, under section 309 (attempt to commit suicide) and 306 (abetment to suicide) of the IPC, those who survive suicide attempts can be prosecuted for the ‘crime’ as also those who abet the attempt. The petitions were originally filed by two retired school teachers, C. A. Thomas (then 80 years) and Mukundan Pillai (then 69) saying they had no further desire to live (The Hindu, 2005). But as law-abiding citizens, they did not want to commit suicide. They wanted to voluntarily end their lives or donate bodily organs to facilitate voluntary death. Thomas’ petition said that freedom to choose the method of one’s death was part of the right to life as guaranteed by Article 21 of the Constitution. A few months after the High Court dismissed his petition, ‘Thomas Master’ committed suicide. My apprehension is that once the state and the legal apparatus begins to define mercy killing, there is no end to the possibilities for subjective and selective determination as to who will be allowed to live and die. Historically, a widespread ‘mercy killing’ programme of the sick and disabled was thought of in the nazi regime. Code-named ‘Action T 4’, the euthanasia programme to eliminate ‘life unworthy of life’ initially focused on new-borns and very young children. Both midwives as well as doctors were required to register children up to age three who showed symptoms of mental retardation, physical deformity. Soon after, the older disabled children and adults were listed for the programme. Hitler’s decree of october 1939, typed on his personal stationery and backdated to 1 September, expanded ‘the authority of certain physicians to be designated by name in such manner that persons who, according to human judgment, are incurable can, upon a most careful diagnosis of their condition of sickness, be accorded a mercy death.’ The first known case of

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‘Baby knauer’ gave the authority to his father, who requested Hitler that his son be allowed to die because he was blind, retarded, and missing an arm and a leg. Jack kevorkian, the physician, was of the belief that he has the right to help people out of their pain if they want to die — constructing it as an ‘a medical service’ and christened the suicide assistance as mercitron.21 As a disabled person the understanding was that the extermination of the old, useless, and the infirm is not humane. There are wellestablished laws in all countries that a terminally ill patient who is conscious and is competent, can take an ‘informed decision’ to die a natural death and direct that he or she be not given medical treatment which may merely prolong life. There are currently large numbers of such patients who have reached a stage in their illness when according to well-informed body of medical opinion; there are no chances of recovery. But modern medicine and technology may yet enable such patients to prolong life, but the rationalization is that since patients will go through extreme pain and suffering, better course is reduce pain and suffering and should be allowed to die. recently, the case of Aruna Shanbaug before the Supreme Court has once again brought the subject of euthanasia into public discourse.22 The mercy killing petition has, changed India’s approach to the contentious issue of euthanasia. The verdict on her case today allows passive euthanasia contingent upon circumstances. Passive euthanasia is usually defined as withdrawing medical treatment with the deliberate intention of causing the patient’s death. The Court has ruled, pending legislation, that passive euthanasia is permissible, and brain-dead patients need not be kept alive by support systems or artificial feeding. From the lens of disability, notwithstanding the fact that 60-year-old Aruna Shanbaug, has spent 37 years in a hospital bed, who is neither in coma nor brain-dead, will the judgement have significant ramifications across the medical, ethical and social dimensions of society. The assumption is that mercy killing is justified if human beings are older adults who are judged unwanted, deemed imperfect physically or mentally, or considered an annoyance? what is significant is that we need to comprehend the context in which such pleas are made. The financial and social resources for disabled are meagre and often without support, living alone as dependent and fragile persons requires care and as families become smaller and more dispersed, disabled people are not likely to have nearby kin who can care for them or serve as their advocates.

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As the globalized forces create the economic crunch, the society is not going to understand. How will we decide that life is no longer precious and worthy? who would be the agency? who would be the decision makers? Doctors/ Patients/family/financial constraints/ Insurance/ Can a disabled person be responsible and make a good judgement. Are family members motivated by unreasonable hope or consider the expenses. These are questions that affect not only end-oflife issues, but also quality-of-life issues for persons with disabilities. They are, therefore, of grave interest to parents of children with special needs, who must make so many choices for their children with such conflicting advice. There’s danger when we start drawing a line to divide lives that have value from lives that do not. where do people with severe disabilities fall? Their families might place them firmly in the ‘value’ category. As parents of children who may not respond in a recognizable way, may never move independently, may require expensive medical care throughout their lifespan, we understand better than most that even lives that seem most remote from society’s notion of normal can be filled with love and grace. we are also all too painfully aware of how wrong doctors can be, and how often their dire predictions do not come to pass. Though Indian society does not rely solely on the doctor’s opinion, bur sooner or later it is the doctor who decides whether there is hope of a disabled person ever ‘recovering’ — if they themselves cannot imagine ever living in such a way — a life can be considered to have no remaining value. The general attitude is that since pain and suffering is unbearable, no one would want to live. However, for disabled people such an understanding is not simple. For instance the voices of the disability advocates was very clear in the case of Schiavo’s passing. In the end, here is less a right-to-die case than a disability-rights one. what are the rights of a disabled? Are they allowed to waive them? If they are unable to do so, can others waive them on their behalf? And if so, does that put every helpless, voiceless person who is dependent on others for treatment and care in peril? As parents of the helpless and voiceless, we must find a way to stand up for their rights — and be sure we are respecting them ourselves. Also, gender is critical because my sense is that disabled women are going to be more affected by the euthanasia debate than men, simply by virtue of the fact that women live longer than men. By and large, women still have been

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socialized to be less assertive than men, and have less of a sense of entitlement when dealing with mostly male authority systems. And in their turn, authority systems are more likely to discount women’s voices. According to some disturbing studies of gender disparities in the legal and medical system, women’s medical treatment preferences were more often ignored because the courts ‘treated prior evidence of women’s values and choices as immature, emotional, or uninformed, but considered men’s prior statements and lifestyle decisions to be mature and rational’. In other words, old women will bear the brunt of any inadequacies in the system our society devises for the fragile old at the end of life. My apprehension is that there may be a double standard of dying. In a novel, walker Percy goads us that ‘tenderness’ leads inevitably ‘to the gas chamber’ — to societies in which the scope for ‘mercy killings’ swells to include not only the terminally ill, but those deemed socially useless as well (1987: 359). The ‘right-to-die’ movement is not calling for a right to die; they’re mostly talking about a right to kill. women and I believe disabled who have been denied full autonomy and respect in our society, it might be tempting to endorse mercy killing. Sometimes feminists we have learned to exercise a ‘hermeneutics of suspicion’ so that we are cautious when new reproductive technologies or issues of passive versus active euthanasia or newer medical interventions are on offer. As early as 1999, Callahan cautioned, Proposals for increasing personal choices which initially look positive can result in unforeseen drawbacks and dangerous side effects — especially when medical technologies are involved. one only has to think of recent intra-feminist debates surrounding reproductive technologies, hormonal therapies, abortion, surrogate motherhood, no-fault divorce, pornography, prostitution, alimony, child custody and employment practices, to name but a few.

Consider the people who were ‘assisted’ in ending their lives by Jack kevorkian.23 He wasn’t killing terminally ill patients — they had Alzheimer’s and were in a lot of pain, but they were alive and walking around. It seems as if the linguistic tools which use words such as slogans like ‘death with dignity’ and ‘a right to die’, easily capture people’s attention. everyone believes in a death with dignity. The movies Million Dollar Baby and Guzarish (a Bollywood film) are

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clear examples. If cinema can do this, society will follow. Throughout the world, the issue of euthanasia or mercy killing is the subject of fierce debate. It is important to understand that there are enough people out there who simply cannot cope with society and do not think their life is worth living. wolbring (2003) asks, why not give them [people who commit suicide] access to a humane death. why do they have to hang or shoot themselves? If they can’t cope with society why not help ease their access to death? Most people will say ‘no’ and there we are because of the devaluing picture of society of disability and only because of that we are thinking about the legalization of Assisted suicide for physical disabilities.

The French Parliament, in fact, is busy debating a draft bill legalizing euthanasia where the illness is of an incurable nature. whether mercy killing should be allowed in India has evoked mixed responses. For instance disabled people themselves are tense on hearing such appeals. A resident of Hoshiarpur, Punjab, Seema rani, 31, has this to say, ‘This news (the mercy plea) will force parents, especially the poor ones, to wonder about their misfortune. It will affect children’s confidence to fight. Many children may feel guilty and will also think of mercy pleas’(The Times of India, 2009). Her problem is with the expensive neurotherapy for MD. She says further, ‘with therapy, at least you won’t become dependent, you will be able to take care of your basic needs.’ However, the common thread running through all the diverse opinions was that legal and medical experts should be consulted before administering euthanasia to a terminally-ill patient, so that misuse of this practice can be prevented Given the fact that there are now voices which believe that euthanasia or mercy killing should be made legal in certain states such as kerala (a state in India) Law reforms Commission argue. They have recommended that Section 309 of the IPC which considers suicide as an offence should be removed.

cochleAR iMplAnts There is a debate in medical and disability advocacy circles about the ethics and desirability of doing cochlear implants, especially in children. A cochlear implant is different from a hearing aid as it does not amplify sounds but electrically stimulates any functioning

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auditory nerves within the cochlea, the inner chamber of the ear. The first cochlear implant devices were devised and implanted in 1957 by French-Algerian surgeons André Djourno and Charles eyriès. Further advances were made over the years by a number of different researchers who tried to perfect such devices until 1972, when the first commercially available device was marketed. within India, the general attitude would be to cure the deaf child or any other disability for that matter. one of the most critical questions is whether deaf people view themselves as only deaf (culturally or otherwise), as disabled or as both deaf and disabled. Some deaf people consider themselves disabled because of their inability to hear. others feel disabled because of experiences with discrimination as well as the inability to hear. Some may claim the disability label in order to qualify for legal protections such as 1 per cent reservation in schools and working place. Deafness is associated with culture, but more so in western countries, both in the USA and the Uk as well as Australia, using sign language, sharing a community with other Deaf people, knowing a certain cultural history and mythology. The ‘normal’ versus ‘abnormal’ issue is purely cultural, not biological. In a community of Deaf people, hearing people would be abnormal. within the disability discourse, authors distinguish between deaf people, with an uppercase D and a lowercase d. Uppercase D deaf people self-ascribe to the deaf way of life, think of themselves as part of the Deaf community, and typically communicate using a sign language. It is important to remember that lowercase d describes people who are physically impaired but who may or may not consider themselves to be part of the Deaf community. These are the people who consider cochlear implant technology an offensive on them and their way of life. For them, not hearing is normative. The idea of creating technology to ‘repair implies that the cultural group is not considered as acceptable, to me the serious issue is that representations of impaired persons’ identities and lives as ‘homogenous’ is problematic in disability studies. As I have mentioned in the introduction, deafness is a clear example of the fluidity and dynamism of social identities, especially when this is viewed in the context of the disabled/ abled binary. Mairian Corker and Carol Thomas (2002) affirm that impairment should be considered as a biosocial phenomenon rather than an unproblematized biological or naturalistic phenomenon. Instead of concentrating on socio-economic factors of disablement shared by most disabled people, there ‘should be an analysis of the

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similarities and differences in disability experiences associated with the full range of impairments’(Corker and Thomas: 24). Although people with various impairments confront some forms of disability which are common to all disabled people, ‘there are also specific kinds of encounters with ableism more closely bound up with the features of the impairment itself’ (ibid.: 19). Corker and Thomas further complicate the matter when they emphasize that ‘the study of disability should carefully consider the ways in which oppressive social relationships intersect and the consequences that this has to lived experience’ (ibid.: 24). However, accommodating the diverse experiences of both impairment and disability makes it more difficult to envision group solidarity, let alone co-operation among groups. Though I have discussed the issues of commonality to create an active political or cultural group, the dissimilarity between disability and impairment in any located individual experience will likely never be clear or certain. Consequently, the comparable forms of oppression and resistance are never communal. As Lane reminds us: we have come to look at Deaf people in a certain way, to use a certain vocabulary of infirmity, and this practice is so widespread among hearing people, and has gone on for so long, and is so legitimized by the medical and paramedical professions, that we imagine we are accurately describing attributes of Deaf people rather than choosing to talk about them in a certain way.

In thinking about the ethics of a cochlear implant, one understanding is that choosing an embryo is different from choosing a cochlear implant. In the latter case, no child is harmed. no child is made worse off than he or she would otherwise have been. Michael J. Sandel’s book, The Case Against Perfection: Ethics In The Age Of Genetic Engineering, opens with the story of a deaf lesbian couple who intentionally chose to conceive a deaf child. They believed themselves to be part of a rich and vibrant culture, and they wanted, as do many straight, hearing couples, a child who was like them. Their story put in a nutshell. The argument is whether deafness is disability or a cultural identity. However, the ‘built-up’ aspect of this couple’s story complicates the debate, which is should we create deafness by design? I think the moral basis of our approval of some technologies to ‘design’ better babies, better athletes, better adults, and our rejection of others? what is wrong with doing everything possible to ensure a better future for children who are or doing to

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get disabled? I think theoretically such a possibility is accessible to us. For instance, the issue in sports is about steroids and other performance enhancers. The debate is whether we should allow this? Similarly, memory-enhancing drugs in an obsessive culture which evaluates marks, so why not use them. what concerns me is whether a deaf couple, with a child who can here, whose desire is to create a child to be like them and consequently select deafness — will this be abuse of a child? The question within disability is whether parents can allow their children to get cochlear implants, and provide the opportunities to hear speech, sound, and music and to participate in the dominant culture, as well as being able to participate in a signing community. Similarly, denying a child with an amputated limb prosthetic devices and the logic is that the child can walk well enough on crutches. A report by DnIS, on 15 September 2009, indicates that Cochlear Limited, an Australia based company, has launched three new technologies — Cochlear Hybrid, Cochlear nucleus 5 and Cochlear Baha B.P. 100 in India. The next-generation implantable hearing solutions are designed for people with partial deafness, moderate to profound deafness and single-sided deafness. The company indicates that more than three million children and adults in India can be benefitted. However, in a country like India and for that matter the developing countries, the cost ranges from Inr 5.3 lakh to Inr 9.50 lakh. The company will offer implant surgeries at 40 centres across the country. The company has successfully conducted 3,500 implant surgeries in the last 10 years in India. To me the market forces would never allow implants to be available for every deaf child. As per a news report in 2010, the state health department will sanction Inr 1.5 crore for implants that would help children with profound deafness to hear and speak. According to the health minister, the Government General Hospital will use part of these funds to do cochlear implants on at least 50 children. However for such an implant, the child would require sessions of speech therapy for at least six months. In context of poverty in India and the facilities which are minimum, can we ever visualize such cures as the way out to empower the disabled.wolbring (2003) asks, Do we want to involve disabled people and other marginalized groups in a meaningful way in our networks and actions? If we answer this question with yes we have to decide in the case of disabled people which type of disabled people we want to include/involve under a given philosophy

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of a network. we have roughly three options. 1) The patient type who wishes to be fixed to the norm and sees their own biological reality as a defect, a group with whom the industry works, 2) the transhumanist type who sees their own body as well as the human body in general as a defect in need of not just fixing to the norm but augmentation above the norm with the addition of new abilities, a group with whom the transhumanist movement works and 3) the social justice social model type who rather wishes to use S&T to a) change the physical environment b) to change the interaction with the physical environment.

It is clear that in case of adults, the self can initiate the decision. However, resources in a country like India will still be problematic. Also, as I have discussed in the previous section, the notion of choice is problematic. To me, technological change is just one example of the exact same issue confronting society at large. I have mentioned in the section on prenatal selection, eugenics is already practiced to avoid giving birth to children who would have certain conditions but additional issues. For instance, removing of spectacles is possible because of innovation in surgery. Thus, ‘normal’ humans will meet these changes with anxiety, perplexity and fear, and while many will accept them, many others will prefer to stay how they are. The only way is sign language, which slowly is happening. The belief is that a language is something a child can learn and produce with no more effort than most other hearing children learn a spoken language. Though the harmonious peer interaction is easy for children, for adults, society is not very sensitive to sign language. There are obviously complex questions that would need to be addressed and resolved before any clear-cut answers can be given.

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notes 1. The Pre-conception and Pre-natal Diagnostic Techniques (Prohibition of Sex Selection) Act, 1994. 2. My deep appreciation to Dr rachana Johri who was a co-author (2008) of the paper ‘Prenatal Diagnosis: where Do we Draw the Line?’, Indian Journal of Gender Studies, 15(2): 291–316. There are large parts of the chapter that I have incorporated with due permission from my co-author. 3. For more information, see http://www.feministsforlife.org/taf/2001/ winter/winter00-01.pdf (accessed on 24 november 2014).

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4. Anencephaly is a fatal birth defect that happens when the neural tube does not fully close at the top. As a result, part of the skull and brain are missing. Babies with anencephaly die before or shortly after birth. 5. Johri, in her research, narrates a case of a woman who had been advised to undergo an abortion but she refused. Ultimately, the baby was born without any disability. 6. P. kaushal, D. r. Malaviya and A. k. roy indicate the figures. For details please see http://www.ias.ac.in/currsci/nov25/articles9.htm (accessed on 24 november 2014). 7. Available at http://www.apa.udel.edu/apa/publications/newsletters/ v99n2/medicine/article-singer.asp (accessed on 22 August 2009). 8. Available at http://www.lifenews.com/2004/09/09/state-709/ (accessed on 29 May 2012). 9. SAMA is a resource group for women and health who is involved in researching on the assisted reproductive technologies in context of infertility. SAMA (http://www.samawomenshealth.org/) is a resource group for women and health, which is also involved in researching on assisted reproductive technologies in context of infertility. 10. Lisa Blumberg (1998) The Bad Baby Blues: Reproductive Technology & the Threat to Diversity. Available at http://www.ragged-edge-mag. com/0798/a798ft1.htm (accessed on 29 May 2012). 11. The Case Against Sex Selection: Human Genetics Alert Campaign Briefing, December 2002. A copy of the report was obtained from Human Genetics Alert, London, United kingdom. 12. The terminology in India varies. I have discussed the terms in Chapter one. 13. Poonam natarajan, Chairperson of the national Trust for welfare of Persons with Autism, Cerebral Palsy, Mental retardation and Multiple Disabilities, stresses that it reflects a shift away from the old thinking that persons with intellectual disability cannot take decisions. However, while she welcomes ‘the recognition of their legal capacity’, natarajan adds that the mentally disabled need to be provided with support to enable them to take proper decisions. 14. In its stay order, the Supreme Court observed: ‘The foetus is fine and does not appear to suffer from any deformity. we cannot say for sure whether the child will be mentally retarded. The pregnancy is in an advanced stage. Moreover, if someone agrees to take care of the mother through the pregnancy and the child when it is born, then why should she be deprived of motherhood’. 15. In May 1981, the late Minoo Masani founded the Society for the right to Die with Dignity (SrDD). Masani was also active in the world Federation of Societies for right to Die and was its President from 1984 to 1986. As a passionate advocate of euthanasia, he campaigned for a

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change in the Indian laws in 1981. After his death, the responsibility was passed on to well-known urologist, the late Dr B. n. Colabawalla who passed away in 2002. Dr Huilgol works with the chief division of radiation oncology of cancer patients and is an ardent supporter of euthanasia. ‘euthanasia is about living with dignity till the end. It is about choices. It is about freedom from the state about issues, which are very personal’, he explains. while euthanasia is right now considered in relation to physical illness, Dr Huilgol believes that an advanced directive is necessary to include advanced stages of mental illness. Bangalore Chapter of the Live well Leave well Society. For more information, see The Times Of India (September, 2002). Terri Schiavo’s, case was bitterly fought by her family and the disability activists. She was unable to make a decision for herself as she was in a persistent vegetative state for 15 years after extensive brain damage. The case gained world-wide publicity and after the intervention of the US President, the feeding tube was pulled off after 12 days. The President of the Indian Society for the right to Die with Dignity, Sadanand Varde moved the bill in 1984 in the Maharashtra legislature seeking to legalize mercy killing. Varde, then an MLC, and later education minister, says the bill itself faced ‘involuntary euthanasia’ when he allowed it to lapse since the House was not in favour. The court did not agree as the law does not allow transplanting organs from a person who is still alive. Consequently, the High Court judges said that the existing law has no such provision and such a request cannot be conceded. Certain cases, such as wanda Hudson who lost her fight to have her five-month-old son, Sun kept on life-support; even though the boy, born with a rare and fatal form of dwarfism, had already outlived the doctors’ earliest expectations for him, his continued treatment was deemed futile by the hospital and the court and he was disconnected from a respirator against his mother’s wishes. In Utah, the parents of six-year-old Jesse koochin successfully prevented a hospital from declaring their cancerstricken son brain dead and ending life support and were allowed to bring him home, where he died a month later. Aruna Shanbaug , a nurse from Haldipur, karnataka (in India) in 1973, was working at the king edward Memorial Hospital, Parel, Mumbai. A ward boy Sohanlal Bhartha walmiki, who did not like Aruna’s orders, attacked her while she was changing clothes in the hospital basement. He choked her with a dog chain and sodomized her. The strangling during the course of the assault resulted in cutting off oxygen leading to brain contusion injury cervical cord injury

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besides rendering her cortically behind. Since 1973, Aruna has been in a vegetative state. on 24 January 2011, the Supreme Court of India responded to the plea for euthanasia filed by Aruna’s friend and a lawyer Pinki Virani by setting up a medical panel to examine her (The Times of India, 2011). 23. Dr Jack kevorkian became a part of the US’ headlines on 4 June 1990. In a Detroit public park, the doctor made 54-year-old Janet Adkins, suffering from the early stages of Alzheimer’s disease, his first ‘suicide machine client.’ In the process, Adkins became ‘America’s first acknowledged case of medically assisted suicide’.

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six

Theorizing Disability I came to theory because I was hurting — the pain within me was so intense that ‘I could not go on living. I came to theory desperate, wanting to comprehend — to grasp what was happening around and within me. Most importantly, I wanted to make the hurt go away. I saw in theory then a location for healing (hooks, 1994: 59).

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oes the theory really heal? what is heart rendering and powerful in Hook’s statement is the question of theory is and what it can do? As a psychologist, my training and subsequent teaching of the discipline of psychology were problematic as my experimentalscientific framing persisted for many years. However, as a psychologist whose research and writing was at the interface of disability issues, I have tried to develop a critical understanding of both psychology and disability. Both my conscious and unconscious leanings have given me courage to engage with the theoretical formulations about the subjectivity of the disabled people as well as the societal context in which disability is embedded. I must submit that owning disability took almost three decades. As a young adult, my yearning was to ‘pass’ as a ‘normal’ person. For many years, though clearly disabled, I chose to walk and not take crutches or the wheelchair with the hope that while sitting or moving out discreetly, I would be able to pass as a ‘normal’ person. I went through torture in long flights, as I had to wear the callipers. It was only later that I took a conscious decision to make my callipers public. So compelling was ‘passing’ for me that one does not only come out to others but one must come out from under the enticing influence of an undisputed sense of normalcy. Practices of silencing can be understood, as the activity of passing, of not coming out, requires immense energy to a lifestyle that depends on ‘passing’. Perhaps it was a response to a society that denied basic civil rights to people who are different. Passing therefore a conscious desire to act as if one is something that one is not

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too many people with disabilities have for too long tried to pass. As Zola (1982: 204) emphatically states, the folk heroes of disability and chronic disease have not been the millions who came to terms with their problems but those few who were so successful that they passed: the polio victim who broke track records, the one-legged pitcher who played major league baseball, the great composer who was deaf, the famous singer who had a colostomy. They were all so successful that no one knew of their disability, and therein lay their glory (1982: 204).

Much before that, it was erving Goffman (1963) who identified the social dynamics of ‘spoiled identity’ resulting from the stigmas of physical difference, of ethnicity and ‘tribe’, and the stigmas of behaviour and morality, to which I would now add the stigmas of history and of place. He defines passing as a strategy for managing the stigma of ‘spoiled identities’ discredited by law, opinion or social convention. Passing has been a logical response to a situation where if people knew about one’s difference, a person could be excluded from work, school, marriage, or community participation. The rationalization, however, is understood because the off-putting pessimistic undertones attributed to disability tend to engender an expectation within the disabled people by the ‘able-bodied persons resulting in the tendency to pass (Titchkosky, 2003). For instance, rod Michalko, who was diagnosed as being legally blind (10 per cent vision) at age 11, describes how he went to great lengths to pass off as fully sighted in his high school years (2002: 74). He preferred to attribute his inability to drive to a fictitious, impaired driving licence suspension than to admit he could not see well enough to drive. The desire for normalcy therefore is empowering, especially if one is not visibly disabled. There have been inenumerable examples of disabled men and women who preferred to ‘pass’ as the negativity of disability is too to powering. Zola called this denial the ‘structured silence of personal bodily experiences’ (1998: 166). This illustrates the marginality of a disabled identity. The sense of internalised oppression that it creates is too difficult to handle.1 Similarly, many disabled women and men who have attained a certain status in life refuse to even admit that they are disabled. while this might be an excellent illustration of the ‘overcoming’, it certainly does not help in raising the issue in the wider society. Similarly, Jai Pal reddy who uses crutches has never tried to associate with disability advocacy and presumably

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tends to pass as normal.2 notwithstanding the other motivations such as political aspirations, what is critical is that many disabled people refuse to acknowledge their disabilities, as there is a fear of non-acceptance or in a psychoanalytical parlance is unconscious denial of difference. what is clear is that a weaker identity tends to take on the identity of the more acceptable one. For instance, some researchers such as olney and kim found that many disabled participants are well aware of the negative meaning of disability within the larger culture, and that factors such as fear of social stigma and concern about discriminatory treatment by others led them to hide their disability status from others, at least in some interpersonal relationships and social settings (2001: 578). They say: Instead of reaching a point of adjustment, participants framed their experience differently from minute to minute, expressing self-assurance and shame, conflict and coherence, sometimes in the same breath. For this reason, we have come to understand the process by which people learn to integrate cognitive disability into identity as a flexible continuum of responses that folds back on itself in various directions in response to a myriad of internal and external factors.

Acceptance and denial therefore are often conceptualized as mutually exclusive responses to one’s disability status. wider society feels embarrassed and therefore attempts to deny and pass on as ‘perfect’. Passing has been a favourite theme in literature in African-American literature. nowhere have the problematics of the colour line been made more salient than within the tradition of racial passing in African-American culture and literature. If a person is able to ‘cross’ the colour line without anyone else realizing it, then what does that line actually signify? Samira kawash asserts that the figure of passing as it is narrativized in these [passing] novels challenges the received notions of race, identity, and cultural difference that continue to inform our understanding of the politics of representation. [T]he passing narrative is not about the representation of blackness or whiteness; rather, it is about the failure of blackness or whiteness to provide the grounds for a stable, coherent identity (1996: 62–63).

Thus passing for ‘normal’, despite a visible disability was not a joke. one tends to be more on the obsessive side and that did take its toll on me. when I do anything, it has to be full and consistent and complete.

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As Simi Linton says ‘disabled people if they are able to conceal their impairment or confine their activities to those that do not reveal their disability have been known to pass’ (1998: 19). Passing, according to Conde, ‘both destabilizes and reinforces the construction of ethnic identity’ because it shows, on the one hand, that identity is a construction, a socially ordained rather than a biologically necessary distinction, and, on the other hand, that identity is nevertheless different on the two sides of the colour line (1994: 93). It may appear that passing as able bodied is easy for the person who appears disabled, but the reality is that it is not, since able-bodied and disabled are distinct and different. Passing is not about interacting in the world, being involved with able-bodied people, having a non-disability-related career, or going to your friend’s second floor home. rather, it is a way to adapt to the task and you have some real expertise to offer. However, passing is crossing some line where the acting as if you are not disabled causes a problem.3 There is a limit between taxing yourself within reasonable boundaries and acting against your self-interest because you don’t want to define yourself as a disable person. In this manner, disability becomes either totally invisible or as suggested by Mitchell as hyper-visible (2001: 393). The latter which might be understood as being remarked upon, noticed or stared at, can be understood if it is placed in some relation to its dialectical twin: invisibility. The most pertinent example is ralph ellison’s novel Invisible Man (1952), which explores the dynamics of exchange and transformation between the invisible and the visible. ellison’s invisible man is not literally invisible. His problem is that his racial markings as an African-American are hypervisible, and so his identity as a human being and speaking subject is rendered invisible. This sort of permissibility and invisibility that derives from it, are certainly critical to the experience of disability. This is very similar to what Iris Marion Young calls the paradoxical oppression, where the marginalised group is made invisible through cultural norms that set it up as the ‘other’, and simultaneously marked out as different by stereotypes (1990: 58). The experience of cultural imperialism means to experience how the dominant meanings of a society render particular perspective of one’s group invisible at the same time as they stereotype one’s group and mark it out as the other. As I indicated in the introduction, stereotypical labels such as cripple (Langri), blind (surdas), and mentally retarded (mandbuddhi) send a message of dependence, and passivity, condemning individuals to repeat narratives of a constant struggle to fight the negative

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images associated with the labels. Consequently, those who dare to call attention to their bodily ‘imperfections’ are shunned. Their demonstrated inability or refusal to ‘rise above’ the body is taken as evidence of their inferiority, and they are not taken seriously. As a psychologist with psychoanalytical leanings, I have (with great interest) read Tobin Siebers’s (2008) work on both passing and masquerade.4 The latter concept is both literal and metaphorical, and has been considered as a crucial concept in many disciplines. The concept of the masquerade was formulated by Joan riviera and used in concurrence with psychoanalysis to examine gender issues. She wrote the following in in her 1929 essay on ‘womanliness as Masquerade’: ‘a defensive posture in which woman may adopt a mask of excessive femininity as a defence when entering professional spaces defined by male power and privilege’. Caught in a trap in which masquerading womanliness is also defined as ‘the essence of femininity’, of what it is to be a woman, she manages only to signify that she is ‘not-a-woman’. Thus, masquerade enables social conventions to be broken, crossing behavioural boundaries. Masquerade, in fact, denotes a pretending/putting on a mask — this is important to Freud’s perspective (with regard to gender), as it is fundamentally essentialist. According to this concept, a woman who violates social codes of her time by participating in an intellectual profession will project an outward appearance of extreme femininity in her appearance and behaviour in order to avoid reprimand for her ‘masculine’ role (Parrack, 2003). According to Siebers, though disabled people pass by concealing their disability from discovery, they also engage in practices, which can display their disability by exaggerating it. Siebers refers to these changed forms of disability passing as the ‘masquerade’. To me it seems that masquerade produces resistance to normative roles and norms. Disabled people feel empowered as desiring subjects, capable of their own re-creation, and in control not only of their bodies but also of their lives. Siebers (2004) has used six narratives, which enhance the understanding of theoretical and political implications of disability. He views, first four narratives as beneficial. According to him, the first narrative indicates that ‘the masquerade may inflect private and public space, allowing expression of a public view of disability for political ends’ (Siebers 2004: 9). within India I think the innumerable disability dharnas (strikes), rallies, hunger strikes, peace marches, candle marches, and court arrests have been the weapons to court arrest, attack, accuse and

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expand the horizon of disability. It was through these efforts that the public and media have initiated discussion on the issues of disability. recently I went to pick up my laptop from the DeLL store. Since it was inaccessible, I had to send my escort to get the laptop. The receptionist refused to allow my escort inside. She also did not permit the escort to enable me to discuss my queries with the engineer. Despite my repeated requests, the reception did not entertain me. After that, in front of the people in public space I crawled and created havoc that they will always register my protest. It was not easy for me to crawl, as I was showing my pathetic, vulnerable and infantilized part. In a way it creates a self, which the public would not want to like. This is not one of my favourite protests, but insensitive people need to be shaken up. Ultimately, the message was that I was asking for justice and public spaces should be accessible. The second narrative is an ‘exchange of ideas both between disabled and able-bodied people so that a sense of disability can be engaged with’ (ibid.). A fellow visually impaired colleague says that people tend to speak louder as if assuming that a blind person is also assumed to be deaf. notwithstanding the irritation at showing annoyance at performing routine deeds and excellence in certain activities such as swimming, sports, and music, the idea is to engage with the understanding of disability. while there can be a struggle over labels, in the issue of passing, use of intentional revelation is achieved through the use of symbols that defend stigma such as eye-catching hearing aids, signing in public, the use of a cane and of course the quintessential wheelchair and crutches. Stigma symbols thus carry currency as through them disability becomes clearly visible. Such a statement is made to the ‘able-bodied’ society to connect with disability issues. The third narrative says, ‘The masquerade may contravene an existing system of oppression’(ibid.: 10). I recall being a member of a project on education. The tendency of the group was to valorize the fact that sitting on the ground makes us connected with the grassroots. My disability became a part of the communication to the able-bodied society that marginality could have different colours. For me, in a developing world, where architectural barriers are more a norm than exception, neither physical nor social navigation is an easy endeavour. In a scenario, where, the non-availability of assertive devices such as power wheelchairs or visual/hearing aids. It is only recently that many of us have become ‘mobile’. As mentioned earlier, my experiences where very intriguing with a motorized wheelchair.

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when I first started going to the market or to meet family, I was greeted with stares as well as questions. In a sense, I felt my privacy was being invaded as there were a number of people who asked personal questions about the wheelchair and my condition. I do on the other hand, experience a sense of freedom as I can manage on my own. However, this excitement is often short lived, as the cloak of competence is contingent on the accessibility of the built environment. Also the fear remains that a disabled person is expected to compensate for the lack associated with disability. Some people use to give unsolicited advice of using the callipers for whole day, which was painful for me. However, the expectation was that this advice should be taken seriously. However, if I cannot do it, it does not mean that it is compulsory. Using a wheelchair without the callipers gave me the independence thus claiming my disability and not overcoming my unnecessary limitation. Such masquerades thus are useful and pinpoint an existing system of oppression. My sense is that despite the serious accessibility issues, disabled people do have experiences, which are not available to the able-bodied. The experiential terrain of disabled can go beyond the cultural mythologies as the able-bodied have no notion of the bodily deprivations. Lonsdale (1990) interviewed a woman in her early 20s who had begun using a wheelchair, instead of the callipers and crutch she had previously used, which gave her valuable exercise; because she hated the effect they had on her appearance and body shape. By contrast, in the wheelchair ‘she felt she could glide quietly and gracefully into a room and look less distorted’ (ibid.: 4). The fourth narrative states, ‘The Masquerade may put expectations and prejudices about disability the service of disabled people’ (Siebers, 2004: 11). As Goffman reports, the able-bodied ‘expect the cripple to be crippled; to be disabled and helpless: to be inferior to themselves, and they will become suspicious and insecure if the cripple falls short of these expectations’ (p. 110). what is significant is that disabled need to contradict the normal expectations that the able society has. notwithstanding my joy for getting a nehru Memorial Museum Library Fellowship (nMML), I was dismayed as the built structure of the library was inaccessible. Also I had to forgo my interactions with other colleagues as I could not get my original room in the required building as it had stairs and the toilet was inaccessible. Though confused, I managed to actually complain and to expose ablest structure. Had I not done this, I would have never got a change.

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now the library has all the facilities such as accessible ramps, toilets as well as provision for the visually impaired for computer usage thus creating a disabled self who is independent. My submission is that narratives of masquerades are really not about impairment. It is not that discrimination based on race, gender, sexual orientation, and religion don’t occur regularly, it is just that the people discriminated against are united in struggle against the collective stereotypes. The fifth and sixth narratives indicate the hindrances of this practice. According to Siebers, ‘the narrative is as follows, ‘Many representations of people with disabilities, however, use narrative structures that masquerade disability for the benefit of the able-bodied public’ (2008: 105). I make sure that I use my callipers when I have to take a flight. Also using my motorized wheelchair clearly indicates that public understand disability (ibid.: 111). Thus, masquerade assists in communicating a message to the society so that identification of disability and the related issues can be connected. A final variety of the masquerade is related to the type informing human interest stories about people with disabilities, Siebers called it ‘disability drag’ (ibid.: 114). Bollywood as well as television are excellent examples It is extremely useful to share disabling parts with the audiences as this is the way one can encircle disability. It is problematic as disability appears as a pretence superimposing able-bodiedness. It is true that Indian cinema is obviously reacting to disability becoming a site of social and political debate. However, the use of superstars such as Amitabh Bachchan, Hrithik roshan and many more whose star value and spectacular performances epitomize their perfect able-bodiedness coupled with charade of disability, not only keeps disability out of community view but converts its lived reality. Taking a cue from Butler and Siebers, the notion of ‘disability drag’ which stifles disability. The masquerade fulfils a desire to tell a story about disability, often the very story that society does not want to hear because it refuses to obey the ideology of able-bodiedness. Thus, the medical mode with its clear interpretation of disability as a ‘personal’ tragedy encourages the disabled to ‘rise above’ and transcend the body. whatever the difficulties, they are expected to be borne by overcoming them. Discouraged to pay attention to whatever aches and pains that might be experienced, the disabled are expected to go about their lives as though their bodies are immaterial. Indeed, it is because the body is held in such contempt that we are able to

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find ourselves living in a world that is structured, as Susan wendell has pointed out, ‘as though everyone can work and play at a pace that is not compatible with any kind of illness or pain’ (wendell, 1997: p. 39). In my view both medical science and rehabilitation apparatus correspond to the pain5 of the disabled body as individual. This in fact has serious problems for disabled people in negotiating the political tussles. Medically, cure and treatment do not underscore the individuality of the disabled person. Since medical expertise addresses the issues of pain, anguish and suffering, it does not allow the disabled person to be a part of community. It is a fact that two people who have polio are the same people just as two visually impaired are the same, but neither their medical history nor the political outlook would be identical.6 Politically the issues of rights are completely different from the predictable process for disabled people with disabilities because their uniqueness goes against the political action groups based on caste, gender and sexual orientation. I know that disabled people have to live with their disability and dignity if they consider themselves human beings. The issue is not to transform their disability into an exceptional power or an alternative image of ability. The test is to function. I really do not want to get into the semantics of this word, but disabled people want to be able to operate: to live with their disability, to come to know their body, to accept what it can do, and to keep doing what they can for as long as they can. I love what Siebers says, ‘They do not want to feel dominated by the people on whom they depend for help, and they want to be able to imagine themselves in the world without feeling ashamed. Sooner or later, whatever we think an object is, we come to esteem it not for what we think it is but for what it really is if we are lucky. we still lack the means to represent what disabled bodies are because there are false notions everywhere and these bodies change what representation is. But people with disabilities are working on it, and they hope to be lucky. what would it mean to esteem the disabled body for what it really is?’ (ibid.)

undeRpinninGs of the disAbility theoRy As the survival issues for the disabled people were and are still significant, theoretical considerations about disability issues have not evolved in the disability discourse in India. As disabled activists and academics have questioned and consequently theorized disability,

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in the west, for the scholars in India, in-depth study of disability is absent in social inquires. The reality is indicative of a disconcerting and perturbing reality. In India, academia has a thriving, evolving history of engaging analytically with now omnipresent caste, gender, lass, and historical issues, disability both as an experiential identity and as a theoretical conception is disregarded. In the past few decades, questions of disability have slowly begun to surface in a range of academic fields such as feminism, education specifically special schools and equal opportunity cells that run certain disability studies programmes such as sign language programme, human rights programme and media understanding of disability. nonetheless, 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. Marian Corker and Tom Shakespeare (2002) editors of the important collection Disability/Post modernity, use their introduction to emphasize disability’s invisibility in recent theoretical work. They stress bluntly that disability has ‘suffered from a theoretical deficit,’ and note that this disregard has only exacerbated our inability to understand and socially accommodate those living with disabilities in contemporary society. This concern is what I foreground so that disability theory someday becomes a part of academic discourse. It is paradoxical that disability issues have become visible only in the last 15 years or so, even though disability has been visible in films, fiction as well as within the familial context for decades. As an active participant in disability advocacy, my initial objective was and continues to raise awareness about the experiential terrain of disabled people so that the hegemony of the ‘able’ could be challenged and contested. However my connection both with academics and activism has helped me that though understanding disability in terms of the rights parlance is important, 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. My reliance on theory7 to explicate and understand the oppression experienced by disability as well comprehend the disability category has always introduced

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scepticism in the minds of those who offer services to the disabled in a country which has seen the transition of neoliberalism. My fantasy is that disability is a critical modality which can enlighten the constructed identities in a way that it of course provides possibilities for emancipation of those who are ‘disabled’ by society’s view of them, but also those who are unwittingly trapped in their ‘normality’. For many of us disability has been associated with a life, which has no memories of being ‘normal’. Consequently, there are so many ‘epiphanal moments’, when a subject ‘moves from one social world to another’ (Denzin, 1989: 91). Like Denzin, I believe that ‘epiphanic experiences’ which ‘rupture routines and lives and aggravate revolutionary changes of the self’. For me, the exciting part is the possibility of opening disability to intricacy and perhaps complication. My desire is to concentrate on the expansion of theoretical ideas. As Donna Haraway (1991: 187) says, ‘we need the power of modern critical theories of how meanings and bodies get made, not in order to deny meaning and bodies, but in order that they have a chance for a future’. For me theory is enabling, as it helps to ascertain the processes which help to comprehend ‘disability’ and disablism and also the corollary ‘ability’ and ‘ableism’. even within the academia advocacy for the cause of the disabled has not accorded the privilege of being a theoretical concern. The critical question is whether the elite academics that construct theories of whatever they deem as justifiable tend to make it a critical terrain and is exclusive since not all elites can enter this terrain. Similarly some espouse antiintellectualism by declaring all theory as worthless. I guess both the positions cannot have an all or none thesis, as both positions would ignore the critical understanding of disability. The attitude can be attributed to the construction of the disability category as purely medical in nature. It is this context that beauty of hooks’ opening quote in the chapter attracts me. Her understanding of power of theory to bring action into being, of theory as a location for action or what is referred as Freirean8 praxis9 is illuminating. However any theory is not intrinsically healing, or revolutionary. Theorizing is directed towards the idea that when people experience void, pain, lacuna and consequently engage in action. Undoubtedly theory has to be envisaged as a channel so that we concede that disability has been neglected as an identity category, while the concerns of other marginalized groups have been more thoroughly attended to. Human reality tends to subjugate certain groups and individuals

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and consider them as substandard for many constituencies such as poor people, people belonging to lower caste, people with different sexual orientations including people who are congenitally disabled or have acquired disabilities, because of various reasons. Such people experience the prejudice of a society on a recurrent basis. I do understand that phemonologically; as well pragmatically there would be differences between acquired and congenital differences. However as a feminist and a disability scholar, I have discussed the problems of universal sisterhood and the notion of hierarchy (see Ghai, 2003). However I do realize that politics of disability specifically in India is far too premature to underscore the specific realities. Though I do accept that different categories cannot be collapsed into the generic category disability, I still feel that too much fragmentation is not going to support disability theory. notwithstanding the qualitative differences between acquired and congenital disabilities, I believe that in the present historical moment, my politics will not allow to support the ‘hierarchy of disability’. For instance whether the disabled person is a polio survivor or a landmine survivor, the idea is to understand the experiential terrain of persons who live with disability. what is critical is that the demarcation between an able-bodied and a disabled person is far more significant, as the construction of disability is internalized as negative. Many at times we go through the experience of natural disasters such as earthquakes or tsunami or wars. we do not get warning signals of such disasters. However in everyday life, generally people are not jeopardized waking up with a reality that they had no conception of. To understand differences one must create a fantasy where you suddenly realize that a Brahmin has woken up as a dalit, or a man as a woman, or a woman as a man, or a white person as black. Such changes shake the psychological makeup of both congenitally or acquired disabled people. For instance the young footballer whose understanding of disability is repulsive suddenly confronts an accident. To be saved from death, suddenly the footballer becomes a different person and is not considered as an outsider. It is very difficult for a new identity of disability is not considered valuable. His life becomes a nightmare and the confusion and chaos creates an atypical notion of his former self. It is complicated task as the body has drastically changed. Though it is true that many realities such as arthritis, diabetes, blood pressure and many such harsh realities like cancer are disabling in the future. The essence is that we are not different in this regard

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from any other human being (See the last chapter on alterity). Then why do we reject disabled persons? The worth of disabled people does not have to live in the myth of perfection. As Siebers (2008: p. 27) says it ‘[e]mbodiment seen complexly understands 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’. I think the very act of understanding the complexity of embodiment is a form of action (Foucault, 1983; Shakespeare, 1995a, 1995b). Disability therefore needs to be understood through a number of epistemological questions. The duality between the ‘disabled’ and ‘nondisabled’ has been a complicated question. From my vantage point in India, I have theorized disability in terms of medicalization, social structure, and questions that arise from the theoretical orientations. within the Indian context disability theory has not really informed practice. In fact ‘for the most part, the academy has taken the diagnostic approach to disability, viewing disability as a medical phenomenon to be understood by professionals and treated through the provision of services and supports that counterbalance personal deficits’ (Gilson and DePoy, 2002: 157). As a consequence, theory and practice have proceeded separately and have not merged into what is traditionally known as a ‘paradigm’. As Pothier says ‘Its goal is not theory for the joy of theorization, or even improved understanding and explanation; it is theorization in the pursuit of empowerment and substantive, not just formal, equality’ (2006: 8). My understanding is that disability is not fundamentally a question of medicine or health, nor is it just an issue of empathy, consideration and compassion; rather, it is a question of the progression in evolving disability as a social category. I am aware of the sheer volume of books and papers claiming to examine disability and the debates that are present in USA, Uk and Australia. My concern is to highlight the theoretical concerns and touch on the debates. As I have written elsewhere, ‘theorizing of the impaired body has remained contentious’. I can only attempt to underscore the possible recourses in understanding disability. At the onset I have to admit that there are no easy solutions. My intention is to expose the tensions inherent in understanding the context of disability. I do this with an implicit and explicit hope, that I would be able to establish, commonality with the wider academia that has

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resisted disability as a worthy category. within India, disability is not interrogated as synonymous with rehabilitation. The emphasis is on medical cure as far as possible. The social, economic and political aspects of disability become secondary. Thus medical response remains the overarching social response to disability. within the disability discourse this response has been read as the medical interpretation of disability thereby creating what is now known as the individual/medical model of disability.10 Before proceeding further, it is important to understand the medicalization inherent in disability theory.

MedicAlizAtion And disAbility within the medical discourse of disability, the epistemological and ontological assumptions about the nature of disability are understood in terms of a realist epistemology. Disability therefore is an objective condition inherent in the individual in the form of physical, intellectual, or emotional aberration or pathology. The response has been read as the medical interpretation of disability thereby creating what is now known as the individual/medical model of disability. The medical model makes two fundamental assumptions. Firstly, locates the problem of disability within the individual. Secondly, it seeks the causes of the problem as stemming from the functional psychological limitations that arise from the individual disability. The scientific, objective and humane exterior of the medical model has not been able to hide the fact that, within its practices, there lurks considerable ambivalence towards the people it professes to aid. Primarily overcoming of disability thus becomes the overarching theme of the medical perspective. Since the pathology is located in the individual, the responsibility of procuring the cure lies with the person who is afflicted with the disability. The fanatical quest to find a ‘cure’ can create a great deal of anger for disability activists who want to initiate a greater acceptance and understanding of disability as being a part of the spectrum of humanity. The notion that disability is a regrettable event that needs to be fixed or cured through medical expertize. However, cure in the Indian scenario where resources are meagre, and numbers innumerable, is extremely difficult to offer. while the philosophy of care and rehabilitation has enhanced the reputation of the medical profession, the disabled people continue to receive the implicit message that they are

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deficient and abnormal. rehabilitation professionals adopt practices, which are aimed at improving the ‘quality of life’ by making a person ‘function’ better. It is realized that while functioning might improve certain aspects of life, the ultimate quality of life, is contingent on normalizing. It is true that medical science11 has played a key role in keeping many disabled people alive by reducing their pain and discomfort. However it tends to reduce/equate disabled people to their impairments, thereby becoming overarching. The power of medical professionals is systematized in such a way that the decree it obtains from society is related to medical decisions, diagnoses and treatment. what is critical is that tyranny of the professionals is removed from the public realm without any knowledge of ‘ordinary people’ and placed on a location where only medical experts can discuss it. The ‘medical model’ therefore ceases to understand disabled people as more than the specific problem. Toolis’s report of one transplant centre is illuminating of how the experts view disability. Says the doctor, ‘As a doctor I see that my main aim is to make people live, and to become independent human beings that will live a fulfilled life . . . I have grave doubts as to whether, however good a Down’s sufferer is, they will ever be able to lead a totally independent life. And in view of the shortage of organs, I feel that my priority, if asked to make a decision between a normal person and a Down’s syndrome patient, is to go for the one who can become that independent person’ (cited in Gates, 2010). The main criticism of the medical model in my mind lies in the fact that it follows an essentialist philosophy. It attributes fixed essential characteristics to the disabled. Further these characteristics are always viewed through the non-disabled people and experts, that necessarily prelude a life of personal loss or ‘tragedy’. These essentialist interpretations of disability actually allow non-disabled experts to assert their damaging understanding of disability, thus ignoring the possibility of disabled people having alternative narratives. These powerful and pervasive medical model views are reinforced in media, books, films, comics, art, and language. Many disabled people internalize negative views of themselves and develop feelings of low self-esteem and underachievement, which reinforce non-disabled people’s assessments of their worth. The medical model, plus the built environment and social attitudes it creates, lead to a cycle of dependency and exclusion which are difficult to break. For purposes of analysis, the predominance of pain, loss and suffering might be looked in a nietzschean framework where impairment-possession

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can be life-enhancing. The vision of medical paternalism12 looms large. The moot question is whether doctors are justified in making decisions about patients’ treatment to which they know the patients would object if they were properly informed. Also, whether they are justified in carrying this treatment out because they believe that the patients’ long-term interests would be served by it and that eventually the patients would agree that the doctors’ action had been correct. Consequently the rehabilitation professionals place emphasis on functioning in such a way that disabled people start declaring his or her own bodies as enemies. notwithstanding the value of therapeutic focus, play becomes recreational therapy, art transformed to art therapy, and, music and theatre, taking the role of drama therapy. every activity is construed as a way to making the disabled ‘better’ and supports the premise that they are not good enough, adequate and normal. rehabilitation therefore has the connotation of being hegemonic, as it is thus inextricably linked with oppression and a direct result of social and cultural commitment to ‘normalcy’. A desire for ‘perfection’ where normal standards of ability, appearance, and behaviour are the criteria for what is allowable: if you don’t measure up, you are inferior. For instance, the licenses given to disabled drivers who drive automatized vehicles still label them as drivers of invalid carriages. Further, a request for a wheelchair while booking an air ticket carries the label of a physically challenged person. The invalidation and interrogating process is contingent on medical understanding of disability. Consequently, an invalid person is one who is incapable of undertaking any ordinary responsibilities and is considered as dependent upon the care of others. This understanding reduces the identities of the disabled to medical categories, thereby limiting their scope for social and cultural participation. The medical understanding functions within the parameters of social givens and thus end up keeping the hegemony of paternalism alive. Some examples are, segregation in mainstream education, employment, difficulties in public transport and absence from the labour market, become markers of this disabled identity. Traditional psychology has replicated this model by use of tools such as Intelligence Quotient (IQ) tests and the mental health measures. Both are riddled with disablist, sexist and middle class values. Much of psychology has not enriched the quality of life of disabled people. on the contrary, it continues to reify intrinsically social and economic problems within communities as individual medical anomalies requiring clinical treatment, rather

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than socio-political intervention. Psychology, thus, continues to play a significant role in giving labels to people with a total neglect of context that is responsible for the label. Disabled people are still defined as ‘difficult’ because they are not in a position to conform to standards of normality. Thus far from being beneficial, or even neutral, the medical and psychological constructions have been at the core of creating the notion of disability, as very profoundly the ‘other’. Confinement through inability enunciates, at a cultural level, the medical and social policy response to disability. In actuality the constructions themselves are debilitating, but medicine has seen them as the solution to disability, rather than as a process that is constitutive of it. Furthermore, the very notion of incapacity, in the medical vocabulary, not only assumes a biological dysfunction, but also places this dysfunction as the root cause of disability. The position, clearly absolves social arrangements from both causation of and responsibility for disability. To make matters worse these medical considerations are always underpinned by what has been described as the personal tragedy theory of disability (oliver, 1990), which suggests that disability is some terrible chance event which occurs at random to unfortunate individuals (which in India is attributed to past sins13). The discourse asserts both implicitly and explicitly that disability is a personal tragedy, thereby becoming the root cause of the most intrusive, violating and invalidating experiences that the disabled go through in the medical field. The assumption is that disabled person in comparison to the non-disabled person is not normalized and is understood as lacking. This applies both to the disabled person as well as the familial world to which she/he belongs. The medical accounts thereby posits a ‘better dead than disabled’ approach and reinforces the stereotype that the disabled cannot be happy or enjoy an adequate quality of life. The disabled person’s problems are perceived to result from bodily impairment and a troubled mind, rather than the failure of society to meet that person’s needs in terms of appropriate human help and accessibility. This understanding places specific burdens on the disabled to reconstruct themselves as normal people as they contend with both implicit as well as explicit assumptions about their reluctance to acknowledge their disabled existence. Consequently, disabled people are subjected to many disabling expectations by the able-bodied society. For it is mandatory for them to be ‘independent’, ‘normal’, and to ‘adjust’ and ‘accept’ their situation. Very often, the unrealistic expectations

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cause more damage to the sense of self of the disabled person than the impairment itself. oliver sums up this view with his observation that, The individual model for me encompassed a whole range of issues and was underpinned by what I called the personal tragedy theory of disability. But it also included psychological and medical aspects of disability . . . fo short, for me, there is no such thing as the medical model of disability, there is instead, an individual model of disability of which medicalization is one significant component (1996a: 31).

Thus disabilities are presumed to be genetic, biological and even birth defects reiterating that medical intervention is regarded as a prerequisite without any contemplation of the social perspective. It too locates disability as inherent to the disabled person and consequently his/her personal tragedy. The tragedy model of disability personifies at one level a fear of death, and can be read as an attempt to deny the inevitability of death. An alternative account, however, suggests that the tragedy perspective has a rational, cognitive basis constructed through experiences in a disabling social context (Swain and French, 2000: 573). Basic to comprehending a non-disabled person’s tragedy view of disability is the possibility of crossing the gulf between the binary of disability and ability. It is true that the non-disabled are ‘TABs’ or ‘temporarily able bodied’. I. k. Zola (1989) was the first to remark that the boundaries between people with disabilities and the temporarily able-bodied are not fixed. It is thus clear that nondisabled people daily experience the possibility of becoming impaired and thus disabled. As Irving Zola argues, ‘any person reading the words on this page is at best momentarily able bodied, but nearly everyone reading them will, at some point, suffer from one or more chronic diseases and be disabled, temporarily or permanently, for a significant part of their lives’ (1982: 242). Thus, the fears are not so ‘illogical’, as the underlying cause has a very strong cogent base. However, the fears definitely operate at the level of the unconscious, because if the non-disabled people were fully conscious of the uncertainty, the attitude towards disability would have been different. on the contrary, this causal link becomes intrinsic to the tragedy model. To become orthopaedically impaired, for instance, will be a personal tragedy for a person whose life is based on mobility and who lacks knowledge of the experiences of people with mobility impairments For such a person, self-identity is founded on being able to walk. For him/her the inability to walk

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would definitely imply a personal catastrophe and thoroughly devastating experience. what we do not interrogate is the fact that certain rules have to be followed in a normative and rehabilitative apparatus As oliver puts it, walking is rule-following behaviour; not walking is rule ignoring, ruleflouting or even rule-threatening behaviour. not-walking can be tolerated when individuals are prepared to undergo rehabilitation in order to nearly walk or come to terms with their non-walking. not-walking or rejecting nearly-walking as a personal choice is something different however; it threatens the power of professionals, it exposes the ideology of normality and challenges the whole rehabilitation enterprise (1996a: 104).

To be non-disabled means that one has been able to avoid the tragedy of disability and is thus not the unfortunate one. For disabled, many at times, able-bodied people utilize disability as a rhetorical crutch when they want to create a dramatic effect. Thus disability becomes a depreciatory and often terrifying symbol. Disability can never be empowering unless one is clearly cognizant of the brave aspects of disabling selves. what is not noticed is the observation that it is not disability per se which creates the very real difficulties that the disabled have in education, work and relationships. Such harsh realities create a further divide between the disabled and the nondisabled, particularly through the association of disability with dependence and abnormality. As eli Clare says, ‘to frame disability in terms of cure is to accept the medical model of disability, to think of disabled people as sick, diseased people . . . My CP is not a medical condition’ (1999: 105). My issue is that the tragedy model of disability and impairment is often internalized by the disabled people’. The oppression that stems from a multitude of stigmatizing factors appears to have a rational basis, which explains why it is so difficult to question the tendency to self-blame and guilt that the disabled carry with them. Living through a daily onslaught of professionals, experts, family and media invalidating their disability experience, the expression of resistance is likely to be interpreted as unrealistic. It will, on the contrary, be constructed as lack of acceptance, unnecessary bravery, and compensation or simply ignored. non-recognition of the oppressive structures of society and rights of disabled people accentuates the problems experienced by the disabled. Similarly, for a non-disabled person whose life is constructed on the basis of being normal, the impairment is experienced as a tragedy, perhaps augmented by

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the trauma of illness or accident. The medical model of disability is that it is based on an essentialist philosophy of disability (Swain et al., 2003: 98–102). As a disabled person the association with the medical establishment cannot be denied and is open to the surveillance. Consequently either one places oneself as the ‘problem’ or to deny the stigmatized identity, so that one is not stigmatized in societal interactions. while the medical model demands that disabled people adapt to society, the alternative model which has been termed as the ‘social model’ demands changes in the social structures so that needs of the disabled can be reflected. An insight into the social model is required to understand the need for a shift away from the medical/ tragedy model of disability.

The Social Model of Disability The Social Model has endowed a significant and empowering political agenda in allowing the contested notion of disability to become a significant and powerful force in social structuring. In contrast to the medical model, the social model arose as a protest against the medical model of disability, which treated disability and impairment synonymously so that disability was located within the body or mind of the individual, whilst the power to define, control and treat disabled people rested within the medical and paramedical profession (oliver, 1996a). A major thesis of this model is that the problem of disability is to be located within society. The cause of the problem is thus not the individual limitations, of whichever kind, but the society’s failure to include the needs of the disabled people in its social organization. The model was borne out of the experiences of disabled people, challenging the dominant individual models espoused by non-disabled people who fail to accept that the disabling factor is not the wheelchair user, but the built environment, which has zero accessibility. Historically, it was when activists challenged these conditions that, the Union of Physically Impaired against Segregation (UPIAS) redefined disability and made a clear distinction between the concepts of impairment and disability.14 Thus while impairment is concerned with the biological ‘lacking part or all of a limb, or having a defective limb organism or mechanism of the body’, disability is seen as social: ‘the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and

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thus excludes them from participation in the mainstream of social activities’ (UPIAS, 1976: 14). This definition was broadened to include all impairments. This interpretation challenges the ideological hegemony of the medical model. It emphasizes that disability is not an illness like measles. In this sense while impairment might be an individual attribute, disability is described as ‘the outcome of an oppressive relationship between people with impairments and the rest of the society’ (Vic Finkelstein, 1980: 47). negative attitudes, limited physical access, limited access to communication and resources, are considered as impediments that interfere with the potentiality of disabled individuals to actualize their potential in the desired roles. The model thus focuses on disability as diversity,15 of human condition and not as an undesirable trait to be fixed or cured. Though the medical approach is looking at disability as an individual experience, it does not understand the context of the social factors, which are responsible for producing and perpetuating disability. An interesting observation can be made on the relationship between an individual’s impairment and the degree to which that individual is deemed incapable of earning their living as an indicator of ‘disability’ in our society. In some ways, this relationship forms the main definition of ‘disabled’ in modern western society. As Metzler in 2011 quotes Herzlich and Pierret who have pointed out in the context of their study of illness and social attitudes: ‘The impairment of the body’s motor and functional capacities is more than a symptom like any other (1987: 85). In a society in which we ourselves as producers, illness and inactivity have become equivalents. That is why today we have come to perceive the sick body essentially through its incapacity to ‘perform’, rather than through the alteration of its appearance. The genesis of this model lies in the analysis of materialist history advanced by oliver. The theory posited that disability is related to economic and social structures and to the central values of modes of production. He adds that the individualized and medical approach to disability is attributed to the functional needs of a capitalistic society, which requires able-bodied people who are physically and intellectually fit. Further, Colin Barnes et al. elaborates that it is not simply the mode of production, but rather the mode of thought and its connectedness with the mode of production (2010: 84). Thus the serious economic changes brought by capitalism affected the social relations with overarching implications for family life. Coupled with the population growth, these factors threatened the given social order.

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According to oliver (1990), the development of capitalism, results in disability taking a specific form (the personal tragedy model) and the social oppressions become more acute. Consequently, the institution becomes the major controlling factor. For the institution was successful because it embodied both repressive and ideological mechanisms of control (Althusser, 1971). As oliver elaborated: It was repressive in that it offered the possibility of forced removal from the community for anyone who refused to conform to the new order. But it was ideological also, in that it acted as a visible monument, replacing the public spectacle of the stocks, the pillory and the gallows, to the fate of those who would not or could not conform (1990: 48).

The underpinning of this perspective was that as the medicalized control gains in proportion, it precipitates the notions of an able bodied individual. Although the medical definitions did gain prominence thereby controlling those who were not fit to pass the test, the kind of institutionalization that the west saw was not there for the disabled people in India. Historically, within India Dalal points out: Large and extended Indian families provided essential physical, emotional and economic support to its members with disabilities. Being cohesive and stable social units, families provided an identity and a sense of security to its members, irrespective of their physical disabilities. The economic and caste status of the family and its networks, also determined the quality of the well-being of its members with disabilities (2002: 21).

My own understanding is that though family in India has been cohesive but patriarchal in nature. Although the last few years have seen a considerable change in the politics of the family structures in India, parents still attach to their children countless dreams, fantasies, illusions and projections into the future. Since the extended family support was and is still there, the removal of the disabled people from community life in India was not enacted. However, while on one hand this proved a boon, it was not without negative consequences. These images assume an altogether different meaning when it comes to a child with a disability. Families are associated with the way society constructs and labels their children, a situation which leads to difficulty in psychological adjustments, social exclusion, marital and economic difficulties. The families had to battle with the primarily negative imagery associated with disability. It is the whole family that is disabled by the unjust society in

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which it finds itself. within this experience two key dimensions are central. First, families with a disabled child face greater chances of material deprivation. Second, they commonly experience a variety of obstacles in accessing the range of information and services that could have had a positive impact on their lives. The social model thus underpins the shifting of the onus from the individual to the family and then to society. I am reminded of Barton who asserted that the crucial task ahead of us is ‘to develop a theory of political action which also involves the generation of tactics or strategies for its implementation’ (2001: 3). The move to social models, of course, does not imply that they all have the same concerns. As I have elsewhere discussed, the formulation given by Priestley’s (1998; cited in Ghai, 2003: 45) classification of different models. He differentiates between materialist and idealist approaches — ‘if we look at the social models we find that some are more concerned with structural and material conditions while others are more concerned with representation’ — suggesting that these differences have implications for both research and political agendas, with materialist approaches emphasizing structural and institutional barriers and cultural approaches focusing on disabling attitudes and representations (ibid.). In this view, the ‘problem’ is not the disabled person, but the lack of appropriate structures and accessible services. The subject thus, shifts from the disabled to the social structures, thus initiating a shift from ‘them’ to ‘us’. It is unfortunate that such systems have been organized that the disabled person faces a hostile environment designed for an ‘able-bodied’ society makes the questioning of a disabling environment a primary concern. Lack of access to communication, be it in the form of availability of Braille materials, augmentative measures or sign language training, heightens the oppression experienced by disabled persons. There has been a lot of evidence, which states that with undeniable clarity, that disabled people live lives blemished by discrimination and exclusion. The social structuring of disability by socio-economic status, gender, location show that disabled adults is likely to have low earnings or unemployed. The social model challenges the view that the human being is flexible and alterable, while society is fixed and unalterable. Disability activists in India have evolved a human rights agenda, which flows from the social model, which argues the environment, must be adapted, so that disabled person’s needs are prioritized. It is important that the right to be included in schools,

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job establishments, the right to access to public buildings, public transports, recreation and health facilities and sexual gratification are not concessions of the able-bodied society.

Social Construction of Disability Another lens to understand disability has been in terms of social construction. Peter Berger and Thomas Luckmann’s work on The Social Construction of Reality has argued that humans produce their world, and themselves within their world through interaction with the environment. This process is essentially cognitive in nature, with language playing a key adaptive role. Thus they say, ‘the developing human being not only interrelates with a particular natural environment, but with a specific cultural and social order, which is mediated to him by the significant others who have charge of him’ (Berger and Luckmann, 1967: 48). To me, ssocial constructionism implies the construction we make of reality. For instance, disability is often explained through stories, ideas and theories to help society deal with reality of disability. However, knowledge never objectively reflects the external reality. It is largely a creation that holds our own experiences, perceptions and values. Also the reality we make of the world around us can only be made through a discursive approach. knowledge only exists when disability is shared with another person. In one sense constructs, that is, shared stories are matter-of-fact, as they are useful in everyday life. when we discursively understand disability, language is a crucial factor. Many scholars such as Susan wendell use social construction and see disability as socially constructed, ‘in ways ranging from social conditions that straightforwardly create illness, injuries and poor physical functioning to subtle cultural factors that determine standards of normality and exclude those who do not meet them from full participation in their societies’ (wendell, 1996: 36). Thus, disability is a powerful social construct within most existing societies and because we are presented with conflicting images of it, disabled people have been placed into the role of the abnormal outsider whose lives and experiences are hidden from the ‘normal’ majority. These notions exist because of a tendency on the part of all human beings to view their own selves and each other from a particular perspective. The resulting constructions are inundated with meanings or value-laden ways of discerning overt as well as unconscious levels of awareness. As these meanings are shared by a large number of people, they manage to create a strong

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consensus about the construction in question. This consensus is so deeply entrenched within the psyche that it comes to be understood as ‘real’ objective fact. once it has been established as a fact, any attempt to say dislodges it as a mere perception is fraught with difficulties, as it is impossible to screen out what is deemed as purely objective and real. As Deborah Gallagher puts it, ‘things are what we make of them because we cannot disentangle things from meanings or distinguish facts from values’ (2001: 665). The critical issue therefore is that disability is used as an explanatory term depicting the appraisal or more accurately, a de-evaluative verdict brought to a given condition such as not being able to see, hear or read. In a recent work by Siebers social constructionism is understood to exist in weak and strong senses (2008: 55). According to him, the weak part is that the dominant ideas, attitudes, and customs of a society influence the perception of bodies. Says Siebers, ‘In an ablest society passing civil rights legislation to permit greater access for people with disabilities is thought unnecessary because the reigning myth explains that they neither understand nor desire to enter “normal” society.’ Thus a rational approach to thinking is about how people oppress individuals unlike them. This does not imply that the rational approach is so very common, as any disabled person will explain the distinctive differences even between disabled people. what is often underestimated is that people easily pick out when someone is different from them but rarely acknowledge the ferocity of their understanding. The strong version however does not rely on human unawareness or misunderstanding to describe for prejudices of sex, gender, race, and ability but on a linguistic model that describes representation itself as a primary ideological force. As Siebers writes further, ‘Strong constructionism posits that the body does not determine its own representation in any way because the sign precedes the body in the hierarchy of signification. In fact, political ideologies and cultural mores exert the greatest power, social constructionists claim, when they anchor their authority in natural objects such as the body’ (ibid.). Scholars such as Judith Butler have indicated that constructionism is derisory in understanding material bodies. what is problematic is that Butler does not seem to understand the relationship between bodies in pain and abject bodies and the depiction of physicality. According to her, ‘The process of exclusion produces a constitutive outside to the subject, an objected outside, which is after all, “inside”

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the subject as its own founding repudiation’ (Butler, 1993: 3). In this sense the disabled bodies continue to delineate and irk the nondisabled bodies as a marker of difference. what Butler says is as follows, ‘The exclusionary matrix by which subjects are formed,’ she explains, ‘requires the simultaneous production of a domain of abject beings, those who are not yet “subjects”, but who form the constitutive outside to the domain of the subject’. In other words Butler argues that the inclusion of abject bodies and their desires cannot be fitted into social norms. As a result disabled people are not yet ‘subjects’. This I think is questionable as disabled bodies are not a fragment of reality. responding to Butler, Siebers says, ‘It is as if Butler has caught a glimpse of a badly turned ankle under the petticoats of the “normal” world, and this vision of disability somehow provides a means to resist subjection’ (2008: 56). As Susan wendell says: In most postmodern cultural theorising about the body, there is no recognition of — and as far as I can see, no room for recognising — the hard physical realities that are faced by people with disabilities . . . the problem with discursive post-modern perspectives on impairment and disability is that embodiment is more than conceptual (1996: 45).

In my thinking social construction was the key (Ghai, 2003), I believe that social construction fails to account for the understanding that that the dominant voice always gets hegemonized. even though deconstruction is possible and probably possibility of resistance is there, the stark physical realities of disability16 are understood in the prevailing assumptions that guide everyday life. To me strong constructionism fails to comprehend for the difficult physical realities faced by people with disabilities Says Siebers, ‘These include the habits of privileging performativity over corporeality, favoring pleasure to pain, and describing social success in terms of intellectual achievement, bodily adaptability, and active political participation. The disabled body seems difficult for the theory of social construction to absorb: disability is at once its best example and a significant counterexample’ (2008: 57). Perhaps it will be helpful to make a distinction between ontological and epistemic views of social constructionism. (edley, 2001). In the epistemic understanding, social construction is about descriptions rather than the body that is described. Thus constructionism (and discursive psychology) is always primarily concerned with descriptions and metaphors.

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or as edwards has put it, ‘attributions of agency, intelligence, mental states, and their attendant problems are in the first place participants’ categories and concerns (manifested in descriptions, accusations, claims, error accounts, membership disputes, etc.), just as much as reality, imitation and authenticity are’ (edward, 1997: 319). what matters is that constructionism is often dependent on the goal of the author. Understanding disabilities as social constructions is not meant to underestimate the trauma experienced by the disabled people. It must be acknowledged that difficulties are very real, indeed, but it does not imply that disability can exist without our beliefs, values and cultural understandings. In this sense, the social model has been instrumental in emancipation of disabled lives. For instance, Liz Crow, a disability activist and scholar shares her relief, when what is perceived as her personal tragedy finds a rejection in the articulation of the social model. Says Crow, This was the explanation I had sought for years. Suddenly what I had always known, deep down was confirmed. It wasn’t my body that was responsible for all my difficulties; it was external factors, the barriers constructed by the society in which I live . . . even more important, if all the problems had been created by society, then surely society could uncreate them. re-evolutionary! (1996: 206).

The domination of masculine issues propounded by the disability advocacy groups in India made me realize that the exclusion of the real experience of impairment is not only a very problematic but also gendered (Ghai, 2003). For example, Corker, (2002) while accepting the concept of disability as a form of social oppression problematizes the foundations on which it has built the conceptual distinction between disability and impairment. To understand the anomaly it is useful to trace the historicity of the debate. notwithstanding the fact that ‘though the social model has changed the way many disabled people and their allies think about disability . . . it is time to attend to a theoretical deepening and to a local responsiveness to disability studies’ (Corker & Shakespeare, 2002: 13).

Aesthetic Theory of Disability and Resistance Gabel & Peters use the concept of ‘struggle’ within the Disability rights Movement in their theory of resistance. They say, ‘The two are related: struggle uses forms of resistance and resistance can be understood as a kind of struggle . . . our use of resistance theory

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adheres to assumptions about the circulation of power through social relations’ (2004: 592). Gabel, has put forward an aesthetic theory of disability (1998: 12). According to her, the development of one’s ‘embodied self through the process of experiencing life is significantly influenced by personal interpretations which are unique to each disabled person. The disabled body interacts within a social environment but ‘identity itself starts with the body: what the body does, how the body looks, what the body says, how the body feels, and how others experience that body’ (ibid.). In evolving a theory of disability, Gabel elaborates further, when I say ‘I am disabled’, I say something about the culture within which I experience life, its values, and its norms. I also consider disabledness in light of my other body experiences (gender, ethnicity, race, sexual orientation) and how those are constructed and valued in culture. Finally, if my statement appears to disagree with the prevailing notions of my culture, then my claim is one of resistance to those notions, and, in the end, my claim collaborates with my culture to construct my disabled body. In the end, my statement says much about me and how I view my body and myself but it also says much about the others with whom I experienced my world (ibid.: 74–75).

Such an understanding helps in conceiving disability in terms of multi-dimensional experiences that use background factors to construct meanings of cultural identity. However, this understanding springs from within a mind/body consciousness that has the capacity to resist and transform values about disability, as well as the capacity to reject notions imposed externally. In other words, the statement, ‘I am disabled’ may be influenced by mainstream cultural ethos, but is eminently a conscious personal choice. Claiming one’s own disability signifies identifying with a disability community and treating it as an aesthetic pursuit. It is an act of decoding in which this aesthetic pursuit creates a cultural identity within which experiences takes on a more positive and altered meaning. This is in close correspondence with Harlan Hahn’s (1988: 223) argument that the disabled people, need to reclaim/reconstruct an aesthetic tradition by deconstructing images of the body as a gestalt or whole body image. Instead of the whole, separate and discreet parts of the body need to be emphasized. In place of a gestalt we need to ‘cultivate a heightened aesthetic appreciation of anatomical variations’. As Susan Peters says, ‘This view requires that one rejects conformist visions of beauty and assert that disability is beautiful’ (2000: 596).

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I think scholars like Gabel and Peters (2007) have underscored the fact that resistance is intrinsically political. More so as it involves multiple stakeholders in adaptable alliances and the assumption is that they can co-resist oppression with the result that its processes can inclusively adhere across paradigmatic boundaries. The later work of Peters et al. demonstrates critical incidences of resistance in different countries, ‘to frame a heuristic of resistance as a unifying construct or political action that recognizes the insights gained from the social model’ (2009: 548).

inteRoGAtinG disAbility And iMpAiRMent while I have debated between disability and impairment (Ghai, 2003) research indicates that the dichotomy between these terms is still to be resolved. As early as 1976, Micheline Mason made the following observation regarding the disability movement in Uk ‘I believe UPIAS existed, and I was pleased to know that, but having been emotionally and intellectually battered to the floor by one of its leaders, it did not feel it was like anything to which I wanted to belong’ (Mason, 1996: 52). Similarly Jenny Morris, a staunch supporter of the social model and the disability movement, says, ‘Like other political movements, the disability movement in Britain and throughout the world has tended to be dominated by men, both as theoreticians, and, as holders of important organizational posts’ (1991: 9). For instance some scholars have indicated their unrest in titles such as ‘Social Model or Unsociable Muddle?’. richard Light pinpoints the current tensions and offers a challenge: It is becoming increasingly clear that one of the key issues in disability activism — the Social Model of Disability — is subject to repeated attacks, particularly within the academic community . . . Despite our concerns about harmful criticism of the social model, we wholeheartedly endorse attempts to offer a more comprehensive or inclusive social theory of disability. [This] is a heartfelt plea for theorists to understand the damage that is done by sweeping claims as to the social model’s shortcomings, without proposing alternatives that are acceptable to the disability community (2000: 10).

Despite the bonuses of the social model, there were criticisms by feminists, who stressed the importance of understanding the personal experience of impairment and actualizing the sentiment that ‘personal is

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indeed political’. Crow’s reservations were significant as the social model clearly indicated a bio-split: This silence prevents us from dealing effectively with the difficult aspects of impairment. Many of us remain frustrated and disheartened by pain, fatigue, depression, and chronic check including the way they prevent us from realizing our potentials or rallying fully against disability (our experience of exclusion and nation). Many of us fear for our futures with progressive or additional impairments. we mourn our past activities that are no longer for us. we are afraid that we may die early or that suicide may seem our only option: we desperately seek some effective medical intervention . . . Yet our silence about impairment has any of these things taboo and created a whole new series of its on our self expression (1996: 209–10).

I am reminded of Lennard J. Davis whose quote was inspirational for me in the 2003 publication. Despite the gap of these years the quote is still as alive as it was. Says Davis: The disabled body is a nightmare for the fashionable discourse of course has been limited by the very predilection of the dominant ablest culture. The body is seen as a site of ‘jouissance’, a native ground of pleasure, the scene of an excess that defies reason, that takes dominant culture and its rigid, power-laden vision of the body to task. The nightmare of the body is one that is deformed, maimed, mutilated, broken, diseased (1995: 5).

Unable to confront the image of ‘the paraplegic, the disfigured, the mutilated, the deaf, the blind,’ the ‘critic of jouissance’ turns instead ‘to the fluids of sexuality, the gloss of lubrication, the glossary of the body as text, the heteroglossia of the intertext, the glossolalia of the schizophrenic. But almost never to the body of the differently abled’ (ibid.). As I have written elsewhere: The apprehensions in acknowledging the centrality of the corporeal are perceived as diminishing the claim to full equality. Consequently, the pregiven, biological, sexed body, which is open to mediation, and consequent change by social processes, has been accepted. Thus, the biological body either disappears as in cyber literature or, it lives with the perception that biology is synonymous with mechanism and fixity. In this sense, attention has focused more on the socially constructed body — the malleable surface of an internally stable corporeality. In other words, though the body is influenced by the discourse, there is very little known of the opposite i.e., how the body reacts and affects the discourse (Ghai, 2003: 115).

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The activists in the disability movement were equally reluctant to include bodies in their fight for rights. The social model reified the notion that the problems faced by disabled people do not lie in our bodies, but in the oppression of society. The justification was that the impaired bodies evoke revulsion that has to be overlooked. This realization was the bedrock for the distinction inherent in the widely accepted definition of disability led by the UPIAS fundamental principles document. while this document paved the way for the recognition of disability as social problem to be eradicated by societal change, impairment, the precursor is conceived as having close links with the medical discourse. The argument was that ‘disability is wholly and exclusively ability [has] nothing to do with the body. It is a consequence of social oppression’ (oliver, 1996: 35). Such an understanding would imply that pain has no real basis in the disabled body as if we admit biological realities then changing the social and political connotations would be shaken. As Tom Shakespeare puts it, ‘To mention biology, to admit pain, to confront our impairments has been to risk the oppressive seizing of evidence that disability is really about physical limitations after all’ (1992: 40). My submission is that human beings are embodied beings who very often utilize their bodies as a means of organizing insights regarding the circumstances surrounding them. To say that, it is not our bodies per se which write the story, rather, the way in which society constructs the disabled bodies. Mary Douglas, the well-known feminist, has talked at length on the ways in which bodies occupy an ambivalent space and are socially ‘policed’ for leakages and crossings between outside and inside spaces. The body according to her is also implicated as a vehicle of communication, that informs the recent theory, contesting the notion of communication as a straightforward transmission of message to the receiver. The room for misunderstanding is considerable, if body is treated as a signal box: a static framework emitting and receiving strictly coded messages . . . It is itself the field in which a feedback interaction takes place. It is itself available to be given as the proper tender for some of the exchanges, which constitute the social situation.

However, scholars such as Finkelstein decried the efforts of activists, who wished to attach significance to the personal experience of impairment in understanding disability (1996: 11). ‘Such work encouraged a shift away from the real world. Finding insight in the experiences of discrimination is just a return to the old file approach

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to expression, dressed up in social model jargon’. In a similar vein, oliver warned, ‘There is a danger in emphasizing the personal at the expense of the political because most of the world still thinks of disability as an individual intensely personal problem. And many of us who made a good living espousing this view would be only too glad to come out of the woodwork and say that they were right all along’ (1996a: 5). However, this position was extremely uncomfortable for many disabled people who believed that disability is not simply a social construction, but may, at least partly reside in an objective impairment, and not just the context in which the person is situated. one of the very vocal activists who pointed out this anomaly was Paul Abberley, who articulated a need for developing the social theory of impairment as a crucial component of a social theory of disability. As early as 1987, Abberleyin contrast to oliver and Shakespeare, recognized the need to emphasize the social origin of impairment. He contended that ‘By preventing disadvantage as the consequence of a naturalized impairment it legitimizes the failure of welfare facilities and the distribution system in general to provide for social need, that is, it interprets the effects of social misdistribution as the consequence of individual deficiency’ (ibid.: 175). My belief is that though we have created a chasm between ‘impairment’ and ‘disability’, we need to question the dualism inherent in the understanding of impairment and disability. As Tremain says, ‘several interculators within disability studies have variously argued, however, that because proponents of a social model have forced a strict separation between the categories of impairment and disability in this way, the former category has remained untheorized’ (2002: 33). The issue is to understand the continuum, so that we know where impairment ends and disability starts. The complexity of disability is embedded in the biological, psychological, cultural and socio-political factors, which cannot be disentangled. Thus disability — restricted activity — has to be understood as the product of multiple bio-psycho-social forces. Thus, the need to decipher a more nuanced theory is critical. The understanding that everyone is impaired, in varying degrees (Shakespeare & watson, 2001: 24) proffers a notable insight into human experience, and can be used as a catalyst for taking apart the dichotomy between ‘the disabled’ and the ‘normal’. The political issue that we need to confront is that for stable disabilities, sickness is as uncertain as it is for the non-disabled persons. However, this category may

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not be fixed, as stable impairments such as polio, may also change in character. As wendell says, illness is equated with impairment even by disability activists and scholars, in ways disability is not. Hence there is anxiety to assure non-disabled people that disability is not illness. Another consequence is the pressure to be (or to pass as) healthy disabled, both within disability activism and outside it. Disability activists have worked hard to resist medicalization and promote the social model of disability because they feel pressured to downplay the realities of fluctuating impairment or ill health (wendell, 2001: 22).

To be acknowledged as a chronically ill, disabled people have to refrain from reminding society of their needs and limitations. Any focus on the bodily limitations in this sense is seen as losing out in the political battle. However, what needs to be understood is that politics is not the working out of a specific stand; rather it is the insistence that the nature of the politics must remain open to question, to modification. For a feminist impairment, like abortion, cannot be governed by a simple politics (Ghai and Johri, 2008). on one hand, feminists all over the world insist that it is a fundamentally political question. Yet, there would be very few in the feminist movement who would deny, that to abort is a personal choice as well. In other words, for personal choice to be a political question, the difference between private and public will have to be grasped. It is only when we engage with this question, that it is realized that what is considered as private is itself a political decision. The tacit premise of the social model, which dichotomizes impairment and disability, thereby postulates that impairment is an indispensable condition for disability. The splitting up demands that, only people who have or are presumed to have impairment be counted as disabled. However when impairment is conceptualized in this way the political nuances of the overcoming process are suppressed, resulting in the value-neutrality of impairment. As a purely descriptive unit, the prescription inherent in it is lost. As a result, there is a failure to comprehend that this process of negotiation with the body has the potential of initiating a full-fledged war on the impaired bodies. However, the negotiation is not a straightforward exercise. In fact, the very idea of negotiation suggests that overcoming of impairment is an individualized concern. Therefore, as Dan Goodley puts it, ‘rather than viewing a turn to impairment as de-politicking, remedicalizing and watering down the social model, more and more

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writers are arguing that a focus on impairment, alongside an alliance with the social model and disability movement, remobilizes impairment’ (2001: 208). This stance echoes the sentiments of Hughes and Paterson, who maintain that ‘politics is as much about aesthetics as it is about economic and public life’ (1997: 337). My belief is that that both the activist efforts as well as academic issues need to comprehend the understanding of impairment and disability. Similarly Shakespeare and watson have been scathing in their critique of the social model. They propose its refutation, ‘. . . we believe that the “strong” social model itself has become a problem, and that it cannot be reformed. our claim is that the British version of the social model has outlived its usefulness. rather than developing piecemeal criticisms or supplying alternative arguments to fill the gaps and compensate for the inadequacies of the social model, it is time to put the whole thing to one side and start again (Shakespeare & watson, 2001: 13–14). The tension stayed on with Shakespeare and watson who argued for and embodied onto-logy of disability or a ‘materialist ontology of embodiment’ (2002: 9–10). Their argument is that social model has become a dogmatic orthodoxy or ‘rigid shibboleth’ that ‘has outlived its usefulness’. They followed Sebastian Tympana in his materialist claim that impairment or ‘physical ill’ ‘cannot be ascribed solely to bad social arrangements’ (1975: 20). This is in congruence with Siebers who states: I stress the importance of pain not because pain and disability are synonymous but to offer a challenge to current body theory and to expose to what extent its dependence on social constructionism collaborates with the misrepresentation of the disabled body in the political sphere. There are only a few images of pain acceptable on the current scene, and none of them is realistic from the standpoint of people who suffer pain daily. The dominant model defines pain as either regulatory or resistant (2008: 61).

My contention is that relocating of impairment as the biological to the realm of the social, is not sufficient to challenge the older understanding in which impairment is a biological given, upon which disability, the social construction, is built. As eli Clare says: we need to pay attention to our bodies — our stolen bodies and our reclaimed bodies. To the wisdom that tells us the causes of the injustice we face lie outside our bodies, and also to the profound relationships our bodies have to that injustice, to the ways our identities are inextricably linked to our bodies (2002: 364).

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For instance, Tremain argues that impairment and its materiality are naturalized effects of disciplinary knowledge/power (2002: 34). According to her, ‘Because much of work in disability studies has assumed a realist ontology, impairment has for the most part circulated in disability discourse as some objective, transcultural and trans historical entity which biomedicine accurately represents’ (ibid.). Another view is put forward by S. Vehmas and P. Mäkelä (2008) who have criticized Goodley and rapley’s (2002: 138) saying that ‘Impairment in the modern, materialist world remains characteristically biological and not an aspect of disabled people’s lives that can or should be changed’. Further they contest that disability studies is not giving equal weightage to understand the close relationship of the brute (biological) level with the institutional (social) level. Taking a cue from Tom Shakespeare (2006), kristiansen, Vehmas and Mäkelä (2009: p. 95) have accused disability studies for concentrating merely on the institutional level and ignoring chiefly for political reasons, the biological facts related to disablement. Instead they feel that the disability studies perspective should finally recognize and accept, that ontology based on facts rather than representations is also better in political terms. Their quarrel is not with the notion that ‘there is nothing oppressive in admitting that impairment includes both physical and social dimensions. Just as a broken leg is a medical matter and the moving around of a person with a broken leg is both a medical and a political matter, impairment in general is often both a brute fact and institutional fact’. However, Tremain (2002: 34) argued that impairment and its materiality are naturalized effects of disciplinary knowledge/power. According to her, ‘Because much of work in disability studies has assumed a realist ontology, impairment has for the most part circulated in disability discourse as some objective, transcultural and trans historical entity which biomedicine accurately represents’ (ibid.). while retaining the argument put forward by the Foucauldian approach, she further asserts that, materiality [impairment] of the body is not to be denied. rather, ‘The materiality of the body cannot be dissociated from the historically contingent practices that bring it into being, that is, objectivize it’ (ibid.). Following Foucault’s line of argument, Tremain thus contends that impairment and its materiality are naturalized effects of disciplinary knowledge and power. This leads to a process of legitimizing of the normalising processes, which are distinctively oppressive in nature. Foucault states that this

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exercise of power can be identified within processes, ‘which determine the conduct of individuals and submit them to certain ends’ (1988: 18). This exercise of power results in individuals adopting specific technologies of the self. These technologies are those process which Foucault says, ‘Permit individuals to effect by their own means or with the help of others a certain number of operations on their bodies and souls, thoughts, conduct, and way of being, so as to transform themselves in order to attain a certain state of happiness, purity, wisdom, perfection or immorality’ (ibid.). Tremain further adds that, If we combine the foundational premise of the social model with Foucault’s argument that modern relations of power produce the subject they subsequently come to represent, then it seems that subjects are produced who have impairments because their identity meets certain requirements of the medical/political system (2002: 42).

For Tremain, ‘If the identity of the subject of the social model — people with impairments — is actually produced in accordance with requirements of the political configuration which that model was designed to contest, then a political movement which grounds its claim to entitlement in that identity will inadvertently extend those relations of power’ (ibid.). In contrast, Siebers uses Foucault’s example of the, pre-modern soldier to interrogate the difference between the disabled body and the docile body (2008: 58). Thus, the ideal of the soldier in the 17th century is easily recognizable in body and action. The body is, therefore, the focus of power. The docile body is subjected, castoff, converted, and improved. It seems that the docile body is like the disabled body. Docility thereby epitomized a new scale of control. Since we do not confront the disabled body we fail to see the contours of docile body, which replaces the able body. As Foucault puts it: what was then being formed was a policy of coercions that act on the body, a calculated manipulation of its elements, its gestures, its behaviour. The human body was entering a machinery of power that explores it, breaks it down and rearranges it . . . thus, discipline produces subjected and practiced bodies, ‘docile’ bodies.

The docile body in other words a disabled body requires supports and constraints, its every movement based on a calculation. It represents the docile body as an evil to be exterminated and the docility of the body is a mirror of the most repulsive injustices of albinism.

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Can There be an Agenda on the Ontology of Disability within the disability discourse, bodies and impairments are thus not only biological entities, but are cultural and social as well. As Paterson & Hughes (1999) affirmed that ‘history of the body is both cultural phenomenon and a biological entity’. I have questioned whether a disabled identity cannot overlook the material reality of the impaired body: ‘Should I blame this pain on society? who can I demonstrate against? not all bodily suffering is a socially curable phenomenon. Some physical pain is simply the consequence of having a body that’s made of flesh. All living creatures know pain. Those of us living with disabilities may know more than most’ (Ghai, 1998: 36). However these concerns of aches, exhaustion, depression, and uncertainty do not find any resonance within the social model of disability. Yet these are the experiences, which set disabled people apart from other socially oppressed groups. Similarly in 2003, I submitted, ‘material body, which is impaired, cannot be left out of the disability discourse’. The incongruity of linking impairment with the biological basis has been a reason for apprehension. As Hughes and Paterson have pointed out that ‘although the impairment-disability distinction de-medicalizes disability, it leaves the impaired body totally at the mercy of medical interpretation’ (1997: 330). 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. The neglect probable goes back to Descartes 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. The tragedy is that these images have been internalized to such an extent that self-perceptions of the disabled people become their own psychological monsters’ (1979: 97). Cheryl Marie wade (1994: 35) cites the instance of her body giving way fully, causing both physical and psychological problems, because her activism made it difficult in accepting her limitations. She saw this emerging from images of self-sufficiency that the non-disabled likes to portray, so that they do not appear as admitting weakness and vulnerability. Such images give the impression that the non-disabled is always autonomous, independent human being who needs no assistance in the process of living the very fact that disabled people

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acknowledge tenacious accounts of their pain and daily humiliations reflect realism of an order that is immutable. Cheryl Marie wade experiences humanity rarely imagined by the able-bodied. when we talk about the body matters, we are petrified of any expression of pain and vulnerability. Since the apprehension is that we would play into the hands of the ablest hegemony. As an ardent admirer of wade’s work I recall another powerful but not untypical example of the new realism of the body. Says wade: To put it bluntly — because this need is blunt as it gets — we must have our asses cleaned after we shit and pee. or we have others’ fingers inserted into our rectums to assist shitting. or we have tubes of plastic inserted inside us to assist peeing or we have re-routed anuses and pissers so we do it all into bags attached to our bodies. These blunt, crude realities. our daily lives . . . The difference between those of us who need attendants and those who don’t is the difference between those who know privacy and those who don’t. we rarely talk about these things, and when we do the realities are usually disguised in generic language or gimp humor. Because, let’s face it: we have great shame about this need. This need that only babies and the ‘broken’ have . . . And yes, this makes us different from you who have privacy of the body . . . If we are ever to be really at home in the world and in ourselves, then we must say these things out loud. And we must say them with real language (1994: 88–89).

Similarly, Carol Thomas puts it ‘Disability is about both barriers to “doing” as well as barriers to “being” are the significant ontological issues’ (1999: 60). Though scholars such as wade and Clare and many others share both the personal and political overtones, and the realization that pain is omnipresent. Seymour endorses that, the ‘spectre of incontinence, leakages, smells and spillages’ engenders anxiety and fear in society as a whole [but specifically the disabled bodies] (1998: 19). A number of scholars, therefore, have been concerned about the ontological issues in relation to impairment, disability and disabled people’s lives. (Campbell, 2005; Shakespeare and watson, 2001a, 2001b, 2002; Shildrick, 2002; Turner, 2001; 2003; Bill Hughes (2008); Dan Goodley and rapley (2002) have underscored the vulnerability of disabled people. However the politics of the subjective pain is understood primarily in unfolding individualistic way. Thus, communicating pain is difficult as we assume that each individual is protected in lonely imprisonment where suffering is the only object of reflection. My sense is that disabled people find this isolation as they are considered as lifeless, leaking and sensory-deprived, facing a predicament in physical wellbeing and social alienation.

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In terms of pain, Hughes and Paterson (1999) quote (with approval) Morris (1991), who argued that pain ‘is never the sole creation of our anatomy and physiology’ but rather ‘emerges only at the intersection of bodies, minds and cultures’. In addition, Bendelow and william’s (cited in Hughes & Paterson, 1997: 329) point out that ‘Pain . . . needs to be reclaimed from exclusive biomedical jurisdiction and relocated at the juncture between biology and culture’. Further ‘This relocation is essential for a sociology of impairment and a sociology of impairment is essential for the development of a social theory of disability’ (ibid.: 329). Goodley (2011: p. 85) warns, ‘we must be careful not to reduce ontology to the individual and appeal instead to the relational ontology’. I am aware of the fact that pain is not always physical. In clinical work, the currency that is clearly evident is the pain of guilt or repression. Undeniably I would not undervalue the amount of psychic pain and I know that the psychic pain transforms into physical pain. notwithstanding this reality, pain of disability is less endurable because disabled people undergo narrow-mindedness and isolation every day. As Siebers puts it, They [the disabled] hurt because the able-bodied often refuse to accept them as members of the human community. And yet most people with a disability understand that physical pain is an enemy. It hovers over innumerable daily actions, whether the disability is painful in itself or only the occasion for pain because of the difficulty of navigating one’s environment. The great challenge every day is to manage the body’s pain, to get out of bed in the morning, to overcome the well of pain that rises in the evening, to meet the hundred daily obstacles that are not merely inconveniences but occasions for physical suffering (2008: 62).

relationally the non-disabled can be petrified of the visible pain and perhaps an assurance that ‘at least we are not disabled’. The experience that disabled people live with realities such as — prostheses, wheelchairs, braces, cane, catheters, are not understood as potential sources of pain but as awe-inspiring examples of the flexibility of the human form or as devices of empowerment. I think it is imperative for contemporary disability theory to acknowledge the negation of ontological reality. Also the hope that every issue con-nected with the disabled existence could be resolved with a change in the social conditions. Fiona kumari Campbell argues that almost without fail in modern discourse, disability ‘is assumed to be ontologically intolerable, that is, inherently negative’ and ‘always

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present . . . in the ablest talk of normalcy, normalization and humanness’ (2005: 109). In one sense my fear has been that recognition of the pain of impairment does not negate the fact that people with difference may be discriminated against collectively. Though both rationally and politically I have assumed a stance that there is a need to recognize that many disabled people are indeed confronted by acquired impairments. Campbell’s work on legal strictures affirms my realization that impairments cannot be resolved only through legislations. Though essential, provision of services and accessible facilities alone cannot challenge the ablest hegemony; a change in the societal attitude towards a more positive construction of disability has to be coupled with the battle of rights. It is much simpler to discuss and devise strategies of discrimination in employment, and education than to talk about our experiences of pain. As a hard core ‘cripple’, many disabled people would even like to be cured of or at least experience some respite from their condition.17 In fact a realization of the embeddedness of disability in impairment, adds to an understanding of the complexities of a disabled lives that are universally shattered and atypical. As I have mentioned in my autobiographical note that as a disabled woman I am marked by two open heart surgeries and breast cancer, a central concern of pain and loss associated with impairment has been my reality and in my experience many more people who live with pain. Hughes’s (2007) notion of frailty is a pointer that ‘frailty and fragility of existence’ can provide an adequate basis on which to address the issues associated with ‘being’ disabled and highlight a ‘critical social ontology’ for disability studies. The concerns of pain, fatigue, depression, and uncertainty do not find any resonance within the social model of disability. Yet these are the experiences, which set disabled people apart from other socially oppressed groups. notwithstanding the other marginalized categories such as caste, gender and sexual orientation, impairment signifies the experiential realities of the body. Thus, conceptualizing disability, as a social oppression might not be an appropriate theoretical framework for understanding the finer nuances of a life marked with disability. Having read Bryan Turner’s (2001) work in the area of disability raises some problematic questions. He situates a case for sociology of rights that is contingent on the universal fragility of human embodiment. According to him, all human beings are fragile and claim the notion of ‘ubiquity of human misery’ (Turner, 2003: 276). Scholars such as Hughes (2007) and Shakespeare & watson (2002) have criticized the

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social model of disability saying: ‘we understand that embodiment taxes the disabled people heavily. Visibility of impairment witnesses the unrelenting, brutality of the non-disabled gaze (Hughes 1999). As I have written elsewhere ‘the disabled are constantly watched; the gaze, is always on the alert, omnipresent, differentiating them from the other people, branding them as inferior, the “cripple”, the “blind”’. worse than the gaze, another feature of the disabled lives, is that of encountering the ‘stare’ (Ghai, 2002: 55). The whole of society stares at disabled people, stripping them of any semblance of resistance. ‘Public stripping’ is a resultant of this gaze and stare, thus leaving the receivers in a state of humiliation and exposure, highlighting their vulnerability in a very intense way. The gaze/stare thus exercises a disciplining power, leaving the disabled people with experiences of shame and invalidation. The reality is that trivial acknow-ledgement is given to ‘the profound oppressions of everyday life’ and to the ways in which the disabled body is routinely and all over the place ‘stunned into its own recognition by its presence as-alien-being-in-the-world’ (Paterson and Hughes, 1999: 603). However Hughes believes that Turner need[s] ‘not trick us into thinking that cultural diversity is mythological or that the Cartesian dualism of the medical model provides an adequate ontology, let alone a justification for biological reductionism (2007: 675). Ambivalences towards illness within disability theory are linked to a reluctance to acknowledge, and indeed an embarrassment about acknowledging suffering as an intractable feature of the human condition. Turner who has highlighted that a ‘minimal, thin theory of human rights’ that uses a ‘minimum criterion’ of commonality based on human frailty, seeking to avoid ‘rich theories of human culture, symbolic communication or reason’ (1993: 505). His notion is that since human beings are frail because their ‘lives are finite’, because they ‘typically exist under conditions of scarcity, disease and danger,’ and because they are ‘constrained by physical processes of ageing and decay’ (ibid.: 501). However, to me conditions of frailty are historically and culturally variable. Following the human rights agenda, we would accept that each human being is free and autonomous. As a disability activist, disabled people too are a society of deprived group which requires certain contingencies. However, the general understanding is that disability is not an individual character trait but as a structural as well as bodily constituent of human society. Thus, vulnerability needs to be

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understood as an analytical category that exposes the frailty intrinsic to all human societies. As MacIntyre puts it ‘something that all of us experience at certain times in our lives and this to unpredictable degrees’; ‘consequently our interest in how the needs of the disabled are adequately voiced and met is not a special interest, the interest of one particular group rather than of others, but rather the interest of the whole political society’ (1999: 130). Thus, the thesis of Turner’s (2001, 2003) assertion of rights, tends to accept frailty as a ‘biological account of human nature alongside an account of manufactured humanity’. However, his argument does not sustain disability too as a part of fragility. Though concerned about the nuances of phenomenology, Turner negates both Simone De Beauvoir’s (1972) claim that physiology cannot ground values and Merleau-Ponty’s (1962: 189) view that ‘man [sic] is an historical idea’. Accepting Turner’s (2001: 263) objective account of the body founded on the ‘unity of suffering’ and the ‘universality’ of ‘disability and impairment, contrasts the phenomenological understanding in which the body is a ‘lived body’ (Merleau-Ponty, 1962; De Beauvoir, 1972). However, if we admit that Turner’s notion of universality of pain is accurate,18 the question is will the society value disabilities? The non-disabled continues to undermine the negative existence attributed to disabled people. will there be an egalitarian world so that fate of the disabled is not associated with existential lack and deficit? In the universalist discourse though loss and lack may preoccupy all of us disabled and non-disabled, the idea that that ‘subjects who are regarded as having control over their bodies are regarded as citizens whereas ‘those reduced to their bodies are constituted as lesser citizens’ (Bacchi and Beasley, 2002: 326). within my context in India, true citizenship for disabled is an idea, which is a remote from real life. I have my doubts if we are to accept frailty as basis for citizenship in spaces, which are hegemonized. Young who is among the most influential theorists of cultural pluralism, asserts that the attempt to create a universal conception of citizenship which transcends group differences is fundamentally unjust to historically oppressed groups: In a society where some groups are privileged while others are oppressed, insisting that as citizens persons should leave behind their particular affiliations and experiences and adopt a general point of view serves only to reinforces the privileged for the perspective and interests of the privileged will tend to dominate this unified public, marginalizing or silencing those of other groups (1989: 257).

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My submission is that if we are to make a case for disability rights, contingent on the understanding of universality of impairment, a more compelling case can be made in India. empirical evidence indicates that in a country like India millions of disabled lives people are marred by discrimination and exclusion. Though the social model approach is more meaningful to assert the oppression created by society but if acceptance of universality of impairment were a more accurate assessment, then the non-disabled people would have appreciation for the vulnerability of every human being. The claims to humanity are challenging if one has to recall the phrase ‘life unworthy of life’. The meaning of the term ‘Life unworthy of life’ was derived from the work Die Freigabe der Vernichtung lebensunwerten Lebens (‘Allowing the Destruction of Life Unworthy of Life’) by karl Binding and Alfred Hoche published in 1920. This work referred to the mentally and physically handicapped and regarded the killing of these segments of society as a ‘healing treatment’. It is indeed poignant when Hughes cites Shylock in The Merchant of Venice. Shylock attempts to convince his Christian contemporaries of his human credentials: Hath not a Jew eyes? Hath not a Jew hands, organs, dimensions, senses, affections, passions; fed with the same food, hurt with the same weapons, subject to the same diseases, healed by the same means, warmed and cooled by the same winter and summer as a Christian is? If you prick us do we not bleed? (2007: 678)

However, the articulate appeal for recognition, as a member of the species is, of course, redundant. Such a touching rendering greets Shylock’s rationalism with narrow-mindedness, that is, with closure of the mind. As an activist, the need of disability studies has to negotiate with social, material reality of disabled peoples lives and the lived experience’ of disability rather than with claims that have roots in a tired, abstract philosophical tradition. My concern is that the generic discussion of suffering is immaterial. In a culture like India, where suffering is the norm, disability appears as one of marginalized categories and belief that each person in any case suffers. My understanding is that innumerable stories tells us that the exclusion of the concerns of disabled reflect an historical practice that continues to render them as invisible by engaging in the process of ‘alterity’.19 Though as a feminist my understanding is to work towards a common humanity, my experience has been that negative ontology of disability tends

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to reassert. we need to change the stories which have constructed human worth with ability.’ notwithstanding that impairment is the ‘normal condition of human living why is it that disabled people are not considered equal. At a philosophical level, I am sure that no one resists the fact that disability can be the fate of every person, but the visibility of disability creates a demarcation. Thus, disability is always marked by the social and the body (impairment) and this condition is obviously knotty. Further, impairment is rooted in the psyche, as disabled people perceive the world and the reaction of the world and how the world responds. The inter-subjectivity and inter-bodily experience is discernible universally, by ‘felt’ processes of socio-ontological invalidation. The universality of the notion of suffering is a reductionist stance as the body is premised here on biological foundations. It symbolizes the kind of counter that one experiences in a patriarchal structure where a woman is considered as ‘naturally’ imperfect. To quote Diane elam, ‘The notion that there is truth to the feminine sex introduces a mode of legitimization to feminist politics that implicitly divides and hierarchizes women between those with authoritative access to that sexual nature and those who require this instruction’ (1994: 31.) Further she adds, ‘Hierarchy is always grounded on the assumption that differences are differences of degree, along a homogenous scale. If femininity is a natural category, then differences between women are merely the effect of degrees of false consciousness and liberation arrives when all women have come to authoritative consciousness of their own sexual identity’ (ibid.: 43). The argument that disabled people too are to be understood as chain of command and though we are ‘flawed’ and ‘defective’ the politics of such equality regimes leaves the disabled in the cold. we cannot ignore the socio-political, economic and cultural context in the lives of disabled people. It is reasonable to assert that we are all mortal as all of us will die. As Bill Hughes clarifies, ‘However mortality and impairment will have meanings that vary with social context, but when the first part of the argument is used to posit a biological infrastructure (impairment) upon which arises a sociological superstructure (disability) then a residual biological reductionism is evident and impairment becomes the master category upon which the claim to disability rights and social justice for disabled people must be built’. In context of my country, social model theorizing has been important. However, the

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distinction between impairment and disability is critical. Granting ontological privilege upon impairment and to transform it into the dominant category in the field of disability studies has been an important step. My fear is that the lived reality of the disabled is still not prioritized, as the decisive issue is the normative and ideal ‘clean and proper’ body. ‘This world . . . that encourages people to perceive disability as thoroughly encapsulated by negation’ (Titchkosky, 2005: 662) remains undisturbed. The non-disabled body cannot be nor cannot become vulnerable or frail because it is not an empirical body. I think it is important to cognize that we should be reflective of the issues of frailty and loss. As Brian watermeyer says: Some losses relate directly to disability, some do not; often disability and impairment are interwoven with identity and experience in a complex narrative which renders separation or identification of ‘disability losses’ meaningless. The very real danger for disabled people is that this sphere of our human experience, of our sense of self, may be rendered less admissible or possibly banished entirely from view under the host of moral imperatives exercised by a medicalizing society — to overcome, normalize, disguise, defeat, disown, defy or otherwise void the perceived emotional trappings of disablement (2009: 99).

The human strivings are undoubtedly universal, but we need to critically evaluate the complexity of the social order. If we were to understand the intersubjective existential angst we would comprehend that both disabled and non-disabled people will experience fear and anxiety. what is significant is that though the connection of the disabled body with human transience and fragility is very clearly evident, and forces a general distrust of the knowledge embodied in it. notwithstanding such realities, which indicate that embodied existence is complex, the fantasy is that ‘perfect able-bodiedness’ and ‘normalcy’ are the desired state. In fact the able society originates and protracts the distancing between disabled and non-disabled people. one can use Tom Shakespeare’s work from the mid-1990s to develop this argument. Shakespeare argued that non-disabled people ‘project their fear of death, their unease at their physicality and mortality onto disabled people, who represent all these difficult aspects of human existence’ (1994: 298). The invalidation has both psychological and ontological dimensions. As Hughes (2007: 68) writes, ‘The first is fear of physical frailty, bodily difference and social vulnerability that is projected onto the disabled other and the second is the process by which the social distancing associated

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with projected fear is frozen into a binary of being that embodies a hierarchy of existence. Ironically, the ontological insecurity of non-disabled identity is the original sin that pushes disabled people to the margins of the human community’. The body marked by disability is problematic because it becomes a reminder of defencelessness, abjection and death. The notion of abjection in terms of Julia kristeva is ‘what disturbs, identity, system and order . . . that which ‘does not respect, boundaries, positions, rules: The in between, the ambiguous, the composite’ also the desire of the non-disabled’s autonomy, self-government and self-determination are flights of the imagination (1982: 4). The disabled body has been regarded as ‘limit without possibility’ (Titchkosky, 2005) and the non-disabled body, at least in its masculine, normative form, tends to be represented as invulnerable (Shildrick, 2002). As Bill Hughes warns: not only does the category of disability disappear into the universal siblinghood of our wounded lives — lives inevitably tarnished by physical and mental limitation — but also the issues of exclusion, discrimination and oppression that are associated with a disabled identity become superfluous. They can no longer be constituted as experiences of specific political import to disabled people. It may be ‘good for the soul’ to admit to ourselves that we are, or one day might become, the other that we (once) despised, but such moral clarity is unlikely to improve the disabled people’s standard of living or bring down the barriers that exclude them from participation in social and economic life. As I have no disagreement with creating multiple positions as the meaning of public life is to enrich humanity. For me the issue is not of deciding which is the most oppressive reality. was it womanhood or disability? My understanding is that we need to open spaces so that ingrained hierarchies are not constructed, as what is scary is the disintegration. My existential realities have been saddened with a linear social order made up largely of able-bodied thoughts. My hope therefore is that perhaps accepting multiple realities would teach us the deep complexities of human existence. I think what is exciting is subverting the normative, so that disabled body is not considered trivial. resistance to oppression can take many forms. The ‘process of becoming’ in a rogerian sense is critical. while political work sometimes takes sides, what is evident is that a concept like disability is always in flux. Conclusions about impairment and disability will not conceal the tensions that are inherent in the developing and

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developed countries. There are times when our own political convictions need to be challenged. we cannot be apprehensive of thinking, and re-working our politics, as stagnation would lead to a rigid stand. As Dan Goodley (2007) tells us both disabled and non-disabled are replete with potentialities so that evolving possibilities for critical disability studies can be formulated. I think it is clear that re-writing the disabled body requires that the normative ideologies of the body be questioned. I am sure that disability theory will be enriched with body theory as well other discourses that attempt to understand the hegemonic notions of power.

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notes 1. Asha, who has mobility impairment, is a well-placed doctor who abhors the idea of ever being called disabled. According to her, ‘everyone has problems, so why should I highlight my disability. I have always tried to overcome the obstacles. I do not wish to become a story for the Press’ (pers. comm.). 2. Jai Pal reddy is an elderly cabinet minister, is visibly disabled and uses crutches. He has overcome his limitations and has never publicly accepted the disability. In 1998, he was awarded the outstanding Parliamentarian Award for his prowess in tackling political debates. 3. resisting an adaptive device such as a crutch can lessen the pain of arthritis. My mother, who is 78, has a close association of disability with me. She had to fly to go to Chennai. while I booked her seat and asked for a wheelchair, I assumed that she will not have difficulties. After reaching she called and complained that she had to walk almost 2 km. My first reaction was: why you did not ask for the wheelchair? Despite the knee’s severe pain, the use of a crutch would signify disability. Her response was muddled and she also said that it is good to walk. 4. Burlesque is as a term appeared in the mid-1800s during the Victorian era. Many commentators indicate that Burlesque was created through the culture to diametrically opposed that was both the aristocracy government and the working class. The goal was to situate the rule of the government and life. For instance, different lifestyles were ridiculed so that normal lifestyle of dressing and behaving could be rejected. In the 1880s, burlesque had created some rules such as: ‘minimal costuming, often focusing on the female form, sexually suggestive dialogue, dance, plotlines, and staging, quick-witted humor, lacking complexity, and short routines or sketches , with minimal plot cohesion across a show.’

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5. The disabled body is reminded of its broken boundaries. As kanga says, ‘There was something about the sound, the snap that always reminded me of those moments when I would crack a rib or break a hip, which happened almost as often as the festivals that sprinkled the Indian calendar’ (1990: 21). 6. It is not that disability movement does not decipher that no two disabled people with the same disabilities could be clubbed together. This perhaps is the reason why the issues of rights becomes far more serious. For me the generic category disability, therefore, wishes to create a dent in the able-bodied society which refuses to appreciate a nuanced understanding of disability. 7. To understand theory, we need to unearth the etymology of the word theory. The Greek word theorein meant to look upon, to observe, to consider, to contemplate; and the noun theoría meant looking at, look-ing more closely, observation, consideration, insight, and scientific contemplation. 8. Paulo Freire’s book Pedagogy of the Oppressed is the most widely known. It was first published in Portuguese in 1968 and the first english translation was published in 1970. Dedicated ‘to the oppressed, and to those who suffer with them and fight at their side’, Freire includes a detailed Marxist class analysis in his exploration of the relationship between the colonizer and the colonized. 9. Praxis implies translating an idea into action. It is a theory in practice communism. 10. Please see the Introduction to this volume. 11. I do need to emphasize that though medical assistance is needed, the pathology is comprehended as an objectified condition. Vandana Madan, a sociologist says, ‘what I mean is the “objectification” of the condition like a doctor treats a person as as a “patient” or in other words “piece of flesh”. Thus, whether a disabled person or a patient are same for the doctor. In my view, this is what gives the medical profession, its sense of being the perfect “oTHer”’. 12. Dworkin defined paternalism as: ‘The interference with a person’s liberty of action, justified by reasons referring exclusively to the welfare, good, happiness, needs, interest or values of the person being coerced!’ 13. Please see Chapter Two in this volume. 14. UPIAS refers to the Union of Physically Impaired against Segregation. 15. I maintain that there is a scale of perfection that society creates to be able to classify by insisting upon internal segmentation. The perfect society prevents the category of the disabled from coming together for collective action. 16. Gregor wolbring, an activist, usually does not hesitate to crawl to reach his seat in the airplane. His understanding is that the society has

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constructed normality in a routine way. even if he prefers to crawl and not be dependent, the onlookers will continue to look at him. As he often says, ‘it is not deficient limbs which are important. It is the fact that limbs are mainstreamed and that is a fact of life’. 17. In the Indian society, parents of children with disabilities are agentic in a way they cling to the concept of a cure for their child’s disability. Please see the notion of karma in Chapter Two, for more information. 18. Ashis nandy calls for a new solidarity of peoples based on an economy of suffering: The only way the Third world can transcend the sloganeering of its wellwishers is, first, by becoming a collective representation of the victims of [sic] man-made suffering everywhere in the world and in all past times, second, by internalizing or owning up the outside forces of oppression and, then, coping with them as inner vectors and third by recognizing the oppressed or marginalized selves of the First and Second worlds as civilizational allies in the battle against institutionalized suffering. (2004[1987]). 19. I discuss the work of Memmi in Chapter eight in this volume.

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Politics of Identity: Oppression and Resistance

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he markers of any identity are complicated. while the discourse in general embodies disability not as definite as compared to identities that are associated with gender, race, sexuality, caste, nation, and class. Although there are problems in identity formation of these categories as well, disability however is surely fluid and consequently problematic. within disability discourse, a major issue that is conflicting is the idea of identity. Although the phrase ‘identity politics’ has been defined differently, for the present purpose I am resorting to the definition given by Gergen: [It] stands for a mode of political activism typically though not exclusively initiated by groups excluded from traditional main-stream politics. Such marginalized groups generate a self-designated identity (group consciousness) that is instantiated by the individual identities of its constituents (cited in Ghai, 1995: 134).

In this sense, identity politics is different from many social movements, such as left-wing, in that the constituents of the former — such as women, scheduled castes and tribes, gays, lesbians, transgender — are politically marked as individuals. Though personal, is political has now become a cliché, the basic relationship owes largely to the natural production of the political categories. one may by virtue of reason or ideology join the environment protection groups, education groups, gay and lesbians, sex workers, or animal saving groups. However, being a Dalit, disabled or a black is not really a matter of choice. one simply is, by virtue of being an existential given. There is an implicit understanding that it is largely by virtue of the ‘natural’ condition of its members that the groups lay claim to certain inalienable rights — for example, citizenship rights — that provide equal opportunities and rewards. Thus that group must fight the struggle of an oppressed group wholly, or at least primarily. So for caste, the fight is of the Dalit people, for impairment and disability, the fight is of people with disabilities, agricultural issues and land concerns are fought by

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farmers, and women’s rights by women alone. This is a persuasive understanding as such politics attaches a lot of currency/value to the formulation of a ‘subject’/subjectivity. So disabled subject and the subjectivity is deemed necessary if disabled are to achieve their political goals. As Sonia kruks (2001: 85) puts it: what makes identity politics a significant departure from earlier, preidentarian forms of the politics of recognition is its demand for recognition on the basis of the very grounds on which recognition has previously been denied: it is qua women, qua blacks, qua lesbians that groups demand recognition. The demand is not for inclusion within the fold of ‘universal humankind’ on the basis of shared human attributes; nor is it for respect ‘in spite of’ one’s differences. rather, what is demanded is respect for oneself as different.

In India’s context, disability has been neglected as an identity category, while the concerns of other marginalized groups have been more conscientiously attended to. As a routine of writing on disability many of us initiate the discussions by giving the number of people who are disabled. Perhaps the significance is that numbers do not give an indication of identity or a collective group. Theoretically these are the reason that disabled people should be included in the democratic processes of India and discuss the future of identity politics. within the Indian Milieu disabilities are not often thought of as a single group, as the disabilities are too different from each other. As I have written elsewhere ‘the assumption that people with impairments would view the experience of impairment and oppression as identical and subscribe to a general category of disability does not hold water. In India, cross impairment distinctions are still commonplace’ (Ghai, 2012: 278). whereas physically impaired people might see impairment and disability in terms of accessibility issues, rather than the factual information of mobility loss, visually impaired people in India are much more likely to talk about the unavailability of readers and literature in Braille rather than lack of beeper crossings. Likewise deaf people in India are at crossroads with the description of their impairment as hearing loss as there is no space to talk about issues of language and communication. Further there is a category of people who, with the use of hearing aids or surgically implanted devices, are able to participate fully in a phonocentric society. It does include deaf people — those who use sign language and are excluded collectively on the basis of their status as a minority language group.

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In fact it is not uncommon to find the labels ‘deaf and dumb’ in use in many parts of the Indian subcontinent. Also within the discourse developmental disabilities and cerebral palsy have their own specific anomalies, so the critical question is that what is the communality between different disabilities? Yet it is very clear that every single human being is temporarily able-bodied. Given the fact that the number of disabled in any given society is constantly increasing, as a number of factors such as recurring bomb-blasts, natural disasters, ageing, poverty, road rage as well as frequent accidents etc. change the landscape of disability. Thus the statistical figures are not critical at all as disability does not respect any class or category. Consequently disability rather sadly reflect the tragic boundaries of ‘normal’ knowledge, thereby comprehending disabled people as ‘abnormal’, ‘deviant’, ‘people with special needs’, etc. Separation in mainstream education, isolation and absence from the labour market in employment, impenetrability1 in public transportation, become markers of a disabled identity. My own understanding is that disability is not really a fixed category most clearly signified by the white cane user or a crutch user. rather it denotes a fluid and shifting set of conditions. As Mairian Corker points out, ‘Disability, like most dimensions of experience is polysemic — that is ambiguous and unstable in meaning — as well as a mixture of truth and fiction that depends on who says what, to whom, when and where’ (1999: 3) (emphasis mine). Many categories such as muscular dystrophy and myalgia encephalomyelitis are not as fixed as perhaps the polio is. even polio changes its character as is evident from the development of post-polio syndrome in young polio survivors as they become older. Thus a collective of disabled people have coagulated to fight the hegemony of the normality. The understanding is that battle can be won only if the disabled act as unified subjects in their own right. Therefore, the need is to bring the disabled together, appealing to a common language, common consciousness and common experience that each disabled can identify with. It is imperative that the understanding is in terms of identity: the political subject being one who remains identical to itself in all circumstances. To be a political subject then is to have a politically recognized identity, an identifiable self, and a consciousness to claim as one’s own. Taking over from disability studies this approach requires that not only would each disabled individual be a subject, but also all disabled people would partake in a common political

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identity called disabled. Thus, the politics that proceeds from this emphasis on disabled as subjects, united in a common struggle, usually going by the name identity politics’ thus becomes a viable methodology to gain a voice which was hitherto silenced.

histoRicAl sKetch in indiA with reference to political discourse about disability issues is a complicated stand issues. Like west is very clearly divided as the dilemma of asserting the disabled identity, India too has its opposition, as the terrain is largely unfriendly. Disability has not received decisive far less critical consideration than SC/ST/oBC/, gender, or sexuality. Yet, there have been changes in the form of improvements in the built environment, court cases that have put on stays on the university so that reservation benefits could be accrued to the disabled. All the same the mandatory narration of the charge calls for critical examination, especially insofar as it functions to specify disability as an important identity category. For us in India, disabled people have attempted to form a collective entity. In this sense disability is often represented as a minority. Identity politics has been engaged with academia since the latter part of the 20th century on the issues of minority and majority. Very few scholars writing from a non-disabled perspective actually lament that disability, as a minority, has been problematic as the primary goal was to first postulate disability as an identity. In India, the discourse on identity has been discussed and argued, as there have been efforts in intensifying the individual and categorical identities and strengthen self-sameness, be it caste religious identities, linguistic groups, gender disability or ethnic conflicts. Mostly Indian politics is more about identity politics. rise and fall of very well-defined caste and ethnic voter blocs supporting political parties stand testament to the power of prerogative politics. Identity therefore is becoming a central organizing principle of ethnicity, religion, language, gender, disability, sexual preferences, or caste positions so that a persuasive solution for obscurity in an otherwise impersonal world. It is thus said to be a ‘pattern of belonging, a search for comfort, an approach to community’. Thus, politically, the concern with difference manifested itself in a more particularistic identity politics. This lead to a generation of viewpoints in which the implicit understanding was that political action of any sort is impossible without a collective category asserting a definite identity. This identity then speaks

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from the vantage point of the specific marginalization experience that has created the need for an assertion of that identity category. Identity politics was thus extremely powerful in creating a political currency. As a result, much important work was done on the specific oppressions associated with sexuality and ‘race’ and within the Indian context caste and religion. Although it is a fact that unity achieved at the cost of differences is in it unfair, it wasn’t as if the universal category of woman has not contributed anything of significance to the cause of women. However along with these metanarratives, what is needed is an examination of how these narratives determine women, so that a careful analysis of their inclusions and exclusions can take place. The binary of disability/ability however, does not figure, as disability represents and tragedy. That the impaired body is unwanted in Indian culture is evident from the reluctance of people to part with their body organs even after death.

identity politics And disAbility In one sense a disabled identity, affirms the fact that disability provides them with an inimitable vantage point, which the non-disabled do not possess. Since the continuum of disability and ability is difficult to comprehend, disabled identity does set against the oppositional category of the able-bodied identity. The understanding that the disabled identity was largely unrecognized, stigmatized and invisible, thereby initiating activism to make it a subject for political recognition. The political negotiation is premised on the beliefs of activists all over the world that the need is to adopt, ‘anon-tragic view of disability and impairment which encompasses positive social identities, both individual and collective, for disabled people grounded in the benefits of life style and life experiences of being impaired and disabled’ (Swain and French, 2000: 569). Though the expectations are that that somehow minorities will disappear and assimilate into a collective unit. However, Tobin Siebers puts it, ‘for liberals, a utopian society with a minority population is inconceivable. If it is the case, however that minority identity is not destined for extinction, it may be worth considering it as a factor in all political representation’ (2008: 70). This realization generated a drive towards seeking public platform and forced the state to introduce legislations and other affirmative action on the lines of various other marginalized groups who have sought representation in a society that debars

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and discriminates against them. In India what is popularly known as a collective group are termed as disability rights groups. It is interesting that there are many his/her stories about disability in India. To my mind, the International Year of Disabled Persons (IYDP) announced in the Un General Assembly in 1981 as called for a plan of action at the national, regional and international levels, with an emphasis on equalization of opportunities, rehabilitation and prevention of disabilities. The theme of IYDP was ‘full participation and equality’, defined as the right of persons with disabilities to take part fully in the life and development of their societies, enjoy living conditions equal to those of other citizens, and have an equal share in improved conditions resulting from socio-economic development. This was followed by ‘The Decade of Disabled Persons (1983–92)’ creating another shift in the representation of disabled people in the political process. The unveiling of the Asian and Pacific Decade of Disabled Persons in 1993 gave a positive to the advocacy. A national seminar organized by Government of India in new Delhi to discuss the various issues concerning disabled citizens. The main need that emerged from the seminar was for a comprehensive legislation to protect the rights of PwD. However, it was only after intense lobbying of the Disabled rights Group (DrG) that the crucial legislation was passed in 1995. nilika Malhotra indicates that ‘Disability rights activism emerged in this context where the voices of persons with disabilities (PwD) that were muted till the early 1990s began to find collective expression (2011: 66). one of the possible reasons for this lies in the complexity and diversity entailed in the issue. PwD were and are a divided group signified by diversity. My reading of Jagdish Chander (2008) indicates that the role of governmentrun institutions for the blind initiated the politicization of the visually challenged and their efforts at self-advocacy. He maintains that there was considerable influence on the publication of Joseph P. Shapiro’s book No Pity: People with Disabilities (1993). He participated in discussions held through video conferencing between Judy Heumman and Justin Dart, both prominent disability rights activists from the US, and some leading people involved in disability issues in Delhi in March of 1994. There were people like Lal Adwani Mani and Chaturvedi who dealt with disability issues from a policy angle in a broad way. kitchlu claimed to analyze the educational and employment measures adopted for the blind by the welfare state of India.

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However, these messages contained a benevolent ‘welfare philosophy’ rather than a struggle for disabled people’s rights. Similarly, some parents specifically Dr Mittu Alur who had a daughter with cerebral palsy set up the Spastics Society of India, now known as ADAPT, in 1972. It was the first special school in India for children with cerebral palsy. At a time when little was known about developmental implications, Alur set up the first model to offer treatment and education under one roof. A broader recognition was a formation of Disability rights Group (DrG). one name that has been synonymous with these changes is Javed Abidi (a disability rights activist). The Disability rights Group worked specifically on cross-disability issues, particularly the drafting and passage of the Disability Act 1995. Abidi rejuvenated the Indian Chapter of Disabled Peoples’ International, a worldwide organization of people with disabilities, and mobilized the emergence of several grassroots groups across the country. Soon after, many of us initiated a candle light vigil on 15 August and a court arrest to seek a commissioner to deal with the new disability act. The formation of disability rights Group however changed its composition many times, but Mr Abidi remained a convener. By that time many such groups formed. It is true that a long path was traversed which was from charity to self-advocacy, the term used by Meenu Bhambani (2005). Her research outlined the three key factors namely cross-disability demands, issues (rights-based issues, issues relating to inclusion/integration, demands for services, facilities and concessions), and resources (material and human). As a rights group, the disabled have used non-violent means much in the Gandhian spirit, resorting to hunger strikes, dharnas (sit-ins) and protests to make the voices of the disabled heard. In one sense, this was similar to the coming together of disabled community, which is captured very eloquently by Simi Linton, an activist in new York: we are everywhere these days, wheeling and loping down the street, tapping our canes, sucking on our breathing tubes, following our guide dogs, puffing and sipping on the mouth, sticks that propel our motorized chairs. we may drool, hear voices, speak in staccato syllables, and wear catheters to collect our urine, or live with a compromised immune system. we are all bound together, not by this list of our collective symptoms but by the social and political circumstances that have forged us as a group (1998: 4).

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These sentiments though in different colours, have been extremely useful, as they have sought to establish an identity, which was hitherto largely neglected. As Swain and French further reify, ‘Disabled identity, as non-disabled identity, has meaning in relation to and constructs the identity of others. To be disabled is not to be one of those’ (2000: 577). Further, they assert that in affirming a positive identity of being impaired, disabled people are actively rejecting the dominant values of normality. ‘The changes for individuals are not just transforming of consciousness as to the meaning of ‘disability’, but an assertion of the value and validity of life as a person with impairment’ (ibid.: 578). My work on identity politics in 2003 has not been read too widely, but the sentiments were closer to a recent work by Tobin Siebers (2008). He has integrated identity politics as the most useful means of theorizing disability. He is unconcerned with identity politics that associate it with self-victimization, groupthink, and political correctness as his understanding is that critique on identity politics relies upon psychoanalytical notion that dependence is a form of weakness and pathology. Further, he feels that the need to cling to social identity is a sign of intellectual weakness, moral failing and inability to embrace an existential condition that is free from the influence of others. The very idea that identity is based only upon minority identities while ignoring majority identifications is problematic. Consequently, anaemic identities are produced since the ideology of ability is normative and an understanding of disability is necessarily pathological and individual. we do not question the ideology of ablest and normative hegemony and the generic understanding of becomes a customary for both human body and mind. It is important to appreciate that though there are many oppressions such as caste, race, gender etc., the philosophy of ability is largely invisible within society.2 what is critical is that that minority identity is not a disability nor an ontological property or state of being. rather, it is an epistemological construction that incorporates a collection of theories about negotiating communal environment. Anguish in other words, does not necessarily lead to weakness. It can also lead to insight and strength. These sentiments are enough proof that people labelled as deviant and deficient have actively sought the identity of being disabled by forming a collective identity that takes pride in the identity of disability. As Cheryl Marie wade, a disabled woman poet says, ‘Many of us couldn’t fit into the mainstream view of the world if we wanted to and some

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of us wouldn’t want to if we could’ (cited in Younker, 1989: 31). Moreover, for most disabled people, disability describes a centrality of their lives. Says Susan Peters, ‘Disability flavors everything we do, whether it is the main focus of our lives or not. whether we come to see ourselves as coloured or black, crippled or disabled, these words describe an essential reality’ (2000: 584). In this kind of perspective, solidarity in political resistance to social oppression is used as a basis for self and social empowerment. In making personal issues into public, disabled people affirm the validity and importance of their own identity. This philosophy of asserting a marginalized identity to the exclusion of every other factor has been popularly known as identity politics. It has been a common notion that disability is inherently negative. However, many of us have experienced disability as a positive value. I quote a fellow disabled Sarla, a polio survivor, who shared this with me There are times, when other people’s conception of my tragedy gets to me. I have to endlessly hear that it is amazing that I work and I am married! And my husband does not have a disability. It ends up giving the message that I should consider myself special and lucky just because a non-disabled has chosen to spend his life with me and we are a happy family’ (pers. comm.).3

Such reactions have to be understood in terms of the overcoming hypothesis that has been discussed in the context of medical model. It is intriguing that when disabled people are seen in roles that are not advocated for them, it lessens the fear that disability carries for the non-disabled. For instance, disability for me has never been a shortcoming. My self-esteem has never been associated with disability, though there have been occasions. when my sexual being is not addressed. notwithstanding the fact that sometimes the clothes were appreciated. However, these were only momentary occasions, as I reiterated the fact that I was brought up with the idea that I can do anything I want to do. My disability is a fact in my life — it doesn’t determine who I am. Having the disability determines how I go through the world, not what I do. Undermining the implicit assurances that being normal is right and should be the ultimate goal created a desire to fight back. If you succeed, the reward will be admiration and praise. This might even appear as preferable to the construction, which looks at the disabled as an object of pity or writes them off as invalid. However, while this might achieve the status

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of a performing artist, it does not imply admission to the circles of normality. The idea, therefore, is to argue that disability as an identity is never off-putting or pessimistic. I am sure that changes are evident and disability is not meant to denigrate, though it happens even in the modern societies. It is strange that though human beings would have a consensus on the fact that no one is perfect. Consequently there are both positive and negative values. For example, many fellow disabled people and I do not comprehend disability as a tragedy. In a conversation with reputed author Ved Mehta, Daniel Fryre (2009) says that on Mehta confesses on his personal website that ‘Partly I write because of blindness, because of the heightened sense of loneliness that many intelligent blind people feel’.4 He reaffirmed this view during our interview. ‘I found my liberation in writing’. Mehta further confesses in the interview: I don’t have, for whatever psychological reasons, any friends at all who are blind — actually I never have had — any relationships with blind people since I moved out of the Arkansas School for the Blind. I had several black friends, and it always made me sad that these friends ended up studying or writing about black culture or welfare for black people. I, for whatever psychological reasons, wanted to be done with the business of blindness from the very beginning.

Interestingly, the only real venture into the blindness arena was the paper condemning the professional blindness establishment of the 1950s for its censorship and unwillingness to translate literature with any overt sexual content into alternative formats. Mehta recalled his mentor, Dr Ten Broek’s suggestion to write more on blindness, but he felt that his work gained him nothing but the antagonism of blind community. Such a conversation clearly enunciates that that there is no essential identity of disability. while there could be disabled people who are active with the cause of disability and others who do not find meaning in disability. Similarly, the same people might be undecided about acquiring other or additional disabilities. My sense is that ambivalent attitudes are rooted in the able-bodied society, which appears as an intangible sphere beyond which it is difficult to think, but also from the cherished connections between identity and personification, for the fact that individual human beings are susceptible to change. I believe that identity was also caught in rendering of disability in a particular understanding social, cultural, charitable and medical significance. It is true that if identity has

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become unsure, identity politics has been impeached, vexed, and condemned to death. As Judith Butler says, ‘identity tied to injury — her formulation for identity politics — has little chance of freeing itself from oppression because once one is ‘called by an injurious name’, ‘a certain narcissism takes hold of any term that confers existence, I am led to embrace the terms that injure me because they constitute me socially’ (1997: 104). My concern is that the attempt to understand a specific group suffering from discrimination try to turn their experiences into a positive basis for political action, and identity is not essentially born from weakness. It is possible to negotiate the pain and reflect the oppressions that others can understand. Despite the fact that scholars such as nancy Fraser pointout that identity politics ‘encourages the reification of group identities’ and promotes ‘conformism, intolerance, and patriarchalism’ (2000: 112–113). However, what I find as intriguing is that why the majority world does gets apprehensive and the politics of identity seems to be immobilizing. The fact that it is not just the identity of disability needs to be asserted, the fear vested in such a formulation is significant. Further, the ramifications of political, epistemological, and ‘real world’ effects are critical. The need is to reinstate the social binary of outsider/insider with a model of universal access. To me the universal access would include not only physical difference but also behavioural/psychological/emotional variations. The moment we interrogate/deconstruct the able bodiedness gaze of the built environment, we will not lose the moral agency to reinstate disability as minority identity. we need to read these social constructions more so when an intellectually impaired girl wishes to have a child despite the fact that she is raped by the guards in an institution.5 Similarly, reading yet another social construction is critical when a wheelchair user wants to vote, she is instructed to allow the sibling to vote. or else when as a wheelchair user I am often understood as self-seeking if I complain about the inaccessibility of my college building including an elevator to go to the staffroom, a social construction is exposed and must be read. when a surgeon advises a prosthetic for mastectomy, a social construction is revealed and must be exposed. As Best states: People need to recognize that not all is social construction, ideology or discourse, all people have bodies and our bodies are often fragile and

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feel pain. There is more to pain than signification and narrative . . . Language and metaphor may well be vehicles for making sense of bodily sensations and actions, but this is not the same as the suggestion that bodily experience solely exists at the level of language and metaphor (2007: 169–70).

pRobleMAtizinG identity politics As an executive member of Indian Association of women’s Studies (IAwS), it took me some time to highlight the issues of disability. However, my identity as President is contingent on the category of ‘woman’ as it is evident that both the women’s movement as well as women’s studies is about women largely. And yet, speaking for disabled women in this present scenario epitomizes an entirely new challenge for many of us in India. elsewhere I have written that The goal of universal sisterhood has resulted in homogenising the very clear differences by resorting to certain core themes that are connected to women’s lives. The very instant the category of women is invoked, as a universal constituency an internal questioning begins over the precise content of that term (2003: 84).

Similarly, politics of disability as an identity has invoked many issues for me. However my affiliation with women sometimes puts me in a self-conscious state as my tokenization as a disabled person becomes evident. what is stressful is the part which feels that can I voice people who are also at margins. Can I claim their issues? I cannot help being conscious that I am not them. Few years back I remember linking disability and water issues in Delhi with the belief that valorizing only one identity is problematic for me. on one hand hope of collective action has the power to change the scenario in which disabled people live in India. In Chapter Three, I have shared the oppressions as well as resistance that disabled people experience in India. notwithstanding the critical significance of voicing the disability issues, the question which is impending is whether identity politics needs to be problematized. Identifying as a woman with visible impairment, has been empowering because the only way to comprehend the disability issues can be positioned only as a marginal disabled woman. A celebrated scholar wendy Brown argues that identity politics becomes ‘invested in its own subjection’, feasts on ‘political impotence’, and descends into a melancholy

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based on a ‘narcissistic wound’ (1995: 71–72). ‘Politicized identity thus enunciates itself, makes claims for itself, only by entrenching, restating, dramatizing, and inscribing its pain in politics; it can hold out no future — for itself or others — that triumphs over this pain’ (ibid.: 74). while I understand that the politics of resentment is premised on the basis of disabilities, but within the Indian framework, have the disabled got their say in the Indian scenario? It is true that there is diversity in the disability community and in the name of identity and consequent identification, identity politics demands that ‘we ALL’ can be together. For me, one of the perils of identity politics is its coercive potential of ‘we ALL’. Sometimes it appears that circumstances have changed in the equality terrain. we recognize that the scenes will be different and its high time that we take a broader, more included approach to equality. There are many scholars who warn that dependence on identity politics give a free rein to a vicious cycle between the minority and majority communities which do not redress the inequities faced by disabled people. Scholars who consider themselves as progressive and as a result like to articulate the politics through the untouched label of ‘Indian citizen’, rather than an identity such as ‘woman’ or ‘Muslim’ or disabled or ‘Dalit’ or ‘homosexual’. It does provides rather expedient political strategies for majority elites. How are we going to resolve the differences between the disabled. Though my fantasy is that there would be a close association with other marginalized groups and not establish a single identity group. However is it possible? Given the fact that in the current scenario, the spirit of collectivity is not alive, even if we hope for a powerful collective voice, won’t the state respond? Though the momentum for changes come many of us, who have a much stronger identity, a sense of who we are and our right to rights. However for those whose voices are not heard, the danger is they become more vulnerable, powerless and weak. Uniting with other disenfranchised groups and individuals will hopefully l bring benefits to people who live with multiple markers such as disability, poverty gender and less developed areas. My question is whether a category disability is large enough to hold all the different impairments, both visible and invisible like mental illness. It is in these terms that I am reminded of k. Anthony Appiah who worries about the politics of group identity: Demanding respect for people as blacks and as gays requires that there are some scripts that go with being an African–American or having

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same-sex desires. There will be proper ways of being black and gay, there will be expectations to be met, demands to be made (cited in Minow, 1997: 56).

The very instant the category of disability invoked, as a universal constituency an internal questioning begins over the precise content of that term. The possibility of individual autonomy for a disable person depends on securing respect for those groups. At the same time, as a person my specific autonomy is limited by the scripts the of a group such as Disability rights Group provide. Such an understanding highlights what Martha Minow (1997) has called the dilemma of difference and what I want to think about in terms of politics of identity of disability. For me, the significant question is whether we have been self-critical and sensitive to the realization that the implied homogeneity of the category of disability was working exactly in the same way as the patriarchal society. Have the disabled people, who take pride in being a part of the disability movement, been cautious in identifying the genuineness and authenticity of those who were presumably representing the cause of the other. For instance, many individuals such as the large group of people with mental illness, do not get represented adequately in the disability movement. Though we are apparently inclusive in disability rights group for instance, we have very rarely understood the issues of mental illness as well as mental health. we need to understand that it is uncomfortable for many groups as many issues are silenced and invisible. For instance, it is intriguing that in a television reality programme ‘India’s Got talent’ the organizers have gone against the normative hegemonies and has brought forward many disabled people. In one sense, inclusion can be celebrated. However, the problem comes when the construction of disability is a mix of charity, curiosity and sympathy. As a result the disabled have to voice their concerns by saying that, ‘please consider only my talent and not my disability’. while identity politics does utilize a language of accurate and bona fide subjective experience, the serious problem is that in one sense politics of identity lives and a sanctimonious contention that if one dwells in a certain identity, the opportunity to acquire legitimate and moral rights to guilt-trip others who are considered more fortunate is complicated. Can we be comfortable in an accrual of a collection of oppressed identities? Is there a way in which we can avoid establishing a hierarchy of oppressions?

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However, my problem is that accepting the shared experience of disabled people is tricky, as I have argued that the unacknowledged ‘subject’ of disability studies as well as activism has been overwhelmingly male and middle to upper class (Ghai, 2003). My contention was and is that women have been ignored because they are already considered to be disabled by their gender and disability. The accusation however can be lodged to the women in the upper strata too. However, female identity has been neglected with indisability discourse because men have dominated due to their privileged status in society (Ghai, 2002). This neglect of the issues concerning disabled women has not been limited to disability theory. Feminism has also demonstrated a lack of interest in including disability in its analysis (Ghai, 2002), and has even been shown to incorporate discriminatory attitudes towards disabled women because they epitomise the passivity and dependence that feminists are trying to dissociate themselves from (Ghai, 2009). I am reminded of Davis who writes thoughtfully about this issue: ‘To truly acknowledge the existence of another identity dilutes the general category of identity, and to prioritize identities places some identities further down the line of significance’ (2002: 101). However it is intriguing that he unconsciously perpetuates this dynamic. Conceding the problems of identity politics, he visualizes a theory that will allow disability to become a primary identity ‘rather than ignore the unstable nature of disability,’ Davis argues, ‘we should amplify that quality to distinguish it from other identity groups that have . . . reached the limits of their own projects’ (ibid.: 26). while ‘instability spells the end of many identity groups’, he predicts, it can lead to the formation of ‘disability as a neo identity’ (ibid.). Feminists have recognized this problem in their questioning of the ways in which identity politics employs a language of authentic subjective experience. Such scaling can not only been devastating, but discordant and disengaging. Thus, the fear vested in such identity politics is that both difference and identity get organized into hierarchies. The right to speak, therefore, becomes a matter of collecting oppression indicators. If one can establish the authenticity of one’s victimization, one will have both moral and political rights. As Menon (2004) points out: we must go much further than saying that ‘women’ mobilise as upper caste/Dalit and so on. rather we need to come to the more complex

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recognition that under different circumstances, and given different kinds of political mobilisation, ‘people’ identify and come together as Dalits, muslims, working class, or much less often, as ‘women’. This is the difficult political face to face-that women coming together as upper caste/ Dalit women’ (Menon, 2004: 179; Italics in original).

My submission is that (I have always problems in using disability rights movement in India which unite around the identification of shared oppression as intrinsically multiple and that we all always need to be cognizant of our mixed inheritance in privilege and subjugation. Perhaps that is the only way in which we can live outside of these groupings. It is critical that if I am fighting to retain one form of privilege while I am harassed to overcome another, how do I resolve my belief that all forms of oppression are wrong? while as someone who has fought the last 15 years as a part of social movements I have concluded that it is almost impossible to develop a common vision of radical transformation. Since continuous and inevitable division of identities drowns a tide of oppression speaking of differences in communality is difficult. In such a scenario, the only way is to fight for collective identity in which the specific marginalization is identified. one way in which identity politics answers this question is by analyzing the voices. who is speaking for whom? Presumably, this stance assumes that each individual should speak for the category of difference that they are seen to represent within the community. So the disabled person is always accountable for the disability perspective and a Dalit must represent the Dalit perspective. However, this concern with visible representation and accountability can actually reflect the ways in which identity politics can exclude certain positions. So ideally an able bodied position could dramatically change its political focus by listening to the voices of the disabled. However, this is a rather simplistic approach and can have negative consequences. For instance, the individual becomes recognizable only as representative of her/his category, which is termed as different. The disabled person thus always represents the disability position and nothing else. Consequently there is no way in which any other identity can be conceptualized. elsewhere I have quoted the example of Helen keller whose popularity as a symbol of overcoming adversity is uncontested. However, very few people know that she was

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a very strong opponent of right wing policies. However, she wrote with a deep sense of anguish about the responses that her political interventions evoked: So long as I confine my activities to social service and the blind, they complement me extravagantly, calling me the ‘arch princess of the sightless’, ‘wonder woman’ and ‘modern miracle’, but when it comes to a discussion of a burning social or political issue, especially if I happen to be, as I so often am on the unpopular side, the tone changes completely’ (Cited in Crow, 2000: 854).

Thus, one individual is assumed to be able to represent an entire identity category. That there could be significant differences between the mobility impaired person and visually impaired person. Thus, the lesbian woman or the mobility impaired person supposed to represent all lesbian women and all physically disabled under the implicit assumption that all of them share the same opinions. The result of this form of identity politics is that in ensuring representation, it can actually lead to tokenism and stereotyping. There may also be some merit in remembering Menon’s (1990) warning that communities are often conjured out of the yearning to be among similar-and-symmetrical selves, to the point where members respond to alterity by overthrowing it beyond their border. In this sense, a self-perpetuating spiral is set into motion, whereby the tighter the boundaries are drawn, the more those included will normalize their sameness and exclude others. The more the excluded will become estranged others, the less the community will be informed by experiences of and reflection upon diversity. However, going by the experience even of the disability movement in India, any movement which finds its voice oppressed within the culture more generally, will soon find that within its own ranks some voices are more equal than others, registering the fact that a cross disability group titled the disability rights group has had the same convenor and the sound bite from him emanating in various channels of Indian television. with reference to finance budgets, the rights group were requesting government to increase the deduction in respect of maintenance, including medical treatment of a dependent who is a person with severe disability to Inr100,000 (USD 1,646 approx.) from the present limit of Inr 75,000 (USD 1,235 approx.). while we cannot deny that a hike of Inr 25,000 (USD 41+ approx.) will help some person somewhere, the proposal is hardly indicative of inclusiveness.

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Since the rights group knows that there are important issues such as getting a centre for development of universal design and barrier-free built environment, a sign-language research and training centre, a national captioning centre, and a school up to Class 12 for the deaf in every state and a college in every zone. A group of disabled people protested against the government for ignoring disability issues in the recently announced finance budget. notwithstanding the benefits for those who have gained, education issues of children from slum area was not taken up. As a result, undermining of the more vulnerable disabled were really dejected. Collective action can succeed if the group understands what is its goal, who is the movement fighting for, what its values are, and how it wants to bring about change however gets diluted. even for the middle class, exemption is allowed for the visually impaired, and the orthopaedically have to contend with 75 per cent disability. Unless they keep on getting re-certification, the possibility of availing the middle-class concessions is not possible. what is critical is that class cannot be ignored in understanding the disability experience as class modifies and changes the expense of impairment, and reduces the exposure to oppressive social relations. Consequently, the significant predicates of upward mobility for a disabled person could be gender and class, rather than impairment per se. The universal experience of disability can obscure the identity politics issues. Thus, diverse cultural groups with similar political agendas not only remain separated, but frequently compete with one another to achieve the same outcome i.e., equal opportunity. Thus even if one acquires the capacity to name oneself as special, such as disabled, it cannot guarantee on its own the material conditions and resources necessary for social thriving, as identity is always produced through interaction shaped in part by other’s definitions. In demarcating the contradiction that troubles the celebration of a disabled identity stemming from oppression, Humphrey concedes that identity politics is an inescapable necessity for oppressed peoples, offering itself as a safe space in which people who share similar conditions of existence can heal from the wounds inflicted by the world, debate the societal origins of their affliction, and grow into survivors with the strength to fight back (1999: 174).

Yet she is concerned that ‘if it becomes the ultimate destiny for oppressed peoples, it will also metamorphose into an inescapable tomb’ because it relies for its existence and its potency on the exclusionary logics which created it in the first place (ibid.).

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identity in 2012 Given these realities, a critical question regarding the fate of those who are marked with ‘multiple categories of difference’. Is a Dalit disabled poor person, first a Dalit, then poor, and then a disabled person? with whom should s/he seek a poltical alliance that would profit the most? A sociologist, ravi kumar says: [Caste] exists as an identity and as an ideological apparatus. It has been kept alive in discourses that characterize family networks, socialization processes and rituals which are so innate to even a modern Indian’s life. Does that mean then that caste defines the everyday social life of an individual? Scholars would argue in the affirmative: look at everyday violence, discrimination in temples, in use of water resources, marriages etc. oppressed and oppressors exist! And truly enough, one does come across incidents of these kinds. I would argue however that what is manifested in everyday relations is the apparent, with its own consequences of discrimination and atrocities, but an analysis of the underlying reality reveals how caste becomes a non-entity when alliances across castes are forged against a common opponent, such as in case of the landless versus landed. There is a problem in the a historical analysis which does not look at the question of identity as in state of constant flux, as a process running in conjunction with the changes taking place in the larger system, of which nobody is untouched (2008: 24).

Thus, it is clear that identity which is understood in terms of fixed nuances creates a problem. whether the grassroots movements are about the search of identity or are they movements of negotiations. what do identity movements signify? whether the movements are instruments of bargaining or about publicity or both? It is to be seen whether they are interrogating the practices of different communities and social institutions, the strategy and policy of the state pertaining to identification. Do the movements aim at social transformation or re-establishing a conservative society? Do the movements represent the voice of the marginal demanding for extension of established rights to particular groups? Does this lead to conflicts or cooperation in society? Could identity movements speak for each other? My submission is that we need to evolve a critical stance towards mainstream politics whether it is of women, Dalits, disabled, widows, or tribals and many such vulnerable constituencies. Don’t we need to understand the implicit discrimination and its overarching concern with literate, well informed, elite, middle-class issues? There are

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times when I have equivocally stayed on with the a collective action of the disability groups as there does not seem to be any solution. My worry is that it does seem ironical that just at the point when disability issues are gaining a recognition in the public arena and the disabled are reaching a position where they are feeling able to write themselves as subjects, I am contesting the idea of a stable disabled identity. Also, just because we are a group of disabled women, does it imply that no differences will be evident? To me the constructive, encouraging and affirmative implication of the judgement, despite its flaws in relation to the present case in Chapter Five, is that it is at least a step towards seeing ‘mentally retarded’ girls as capable of leading a normal life, getting married and having children. I am reminded of a rather pertinent question asked by nancy Harstock in the context of feminism. ‘why is it that just at the moment when so many of us who have been silenced begin to demand the right to name ourselves, to act as subjects rather than objects of history that just then the concept of subjecthood becomes problematic’ (Harstock, 1990: 163). Similarly, responding to a critique of identity politics, bell hooks says, ‘Yeah it is easy to give up identity, when you have got one’ (1990: 163). However, I also understand that merely stressing the issues of identity is not enough. Being a disabled does not imply that you are instinctively an activist. A constant struggle with the self is needed in order to reject the ‘normative’. Therefore, it is important to retain a self-critical component within the larger struggle of asserting the rights and identity. notwithstanding the fact that identity politics is a contested terrain, it is worthwhile to recall the political character of both. The disability movement has often been understood as most powerful when it grounds itself in essentialist notions of disability. The question however is whether the notion of difference can break out of the vicious cycle in which disabled are self-evident. In other words, is it possible to have a disability politics, which does not have to rest on a notion of disabled identity, or on an essence, which would seek its political realisation? How can we as disabled acknowledge differences, without resorting to a vortex of the hierarchy of oppression? Possibly, it is worthwhile to register the fact that the rhetoric of rights operates as a mechanism of both inclusion and exclusion. For those who are in a position to take care of their own interests and/or have adequate assistance to apply for services of one’s choice and

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if necessary appeal, legislations can be of great value indeed and a means for greater inclusion. As ruth Lister has so aptly formulated, ‘Autonomy and agency that derives from rights can only be made possible by the human relationships that nourish them and the social infrastructure that supports it’ (1997: 114). In this sense the identity of the disabled presumes a certain stability of mostly tangible impairments as evidence of a bonafide disability identity, which clearly marginalizes those with non-apparent impairments such as learning disability. whilst the reluctance or refusal to differentiate between impairments by identifying them, augments the claims of people with apparent impairments that they represent all disabled people. The problems come when there are people who are coming to see themselves as disabled in spite of not being recognized as disabled in traditional discourses. For example, how can we take care of someone who is severely disabled and has cancer? So should we have a group of disabled women who also live with cancer as a specific identity? For me, the additional hurdles are encountered when both men and women whose disabilities have been invisible even apparently question the hierarchy of impairments, as is the case right now the people with learning disabilities. regarding disabilities there may be again a marginalization as they experience other hierarchies of orthodoxies and oppressions. Similarly, within the Indian cultural scenario, mental illness is as stigmatizing as any physical illness. within the disability politics, the issues of identity have retained a binary character. Therefore, it has not interrogated the drawbacks of postulating an essential identity of the disabled person. Moreover, it has not questioned whether this identity is going to be contingent on the stability of unified body image. And, if one counts a disabled only for political reasons, isn’t disability becoming just another identity category? Taken in this form, it is difficult to imagine how it might seem to disturb other categories or the boundaries that seem to separate us from one another. Consequently, if identity is only reinforcing/ reiterating distinctions by playing into the same hierarchical system, can there be a way out? However, if this identity is serving its purpose, then there is merit in keeping it alive and vibrant. As Price and Shildrick maintain, Both personal identity — the sense of a unified unchanging and bounded self, a base perhaps from which to demonstrate autonomous agency — and

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group identity — with its emphasis on knowing who is to count as the same, seem to manifest a nostalgia for the modernist values of separation and exclusion. Perhaps all politicised groupings face the question of counter identity, which promises the power of solidarity in challenging group devaluation, whilst at the same time demanding the policing of its own boundaries and the marginalisation of difference just as surely as does unmarked identity (Price Sheldrick, 1998: 235).

Thus, it is important to be a little wary of accepting such practices. while it is true that they interrogate norms and labels, leading to an identification of the problems inherent in them, we need to be cautious. As, Spivak warns, to be critical of standpoint epistemologies that presume that a person’s identity assures a definite experience or knowledge of the world, reminding us that class consciousness and class position do not necessarily coincide (1988: 277–78). Thus, we should act as if an identity were uniform only to achieve interim political goals, without implying any deeper authenticity (Spivak, 1990: 1–16). In voicing my doubts, I am not denying that significant gains have accrued by resorting to identity politics, whether it was in the form of visibility or getting the right to vote or an inclusion into the national census. It was through a collective process of writing oneself as subjects that these dreams became realities. Identity, however, is neither natural nor stable and the problem of identity politics is to assure that it is. The kinds of tensions of identity formation, clearly demonstrate that we definitely need to pay attention to hierarchical structure of difference that concentrates on an acceptance of fixed boundaries. As Julia epstein puts it, ‘The normal, even when understood to represent a curve or continuum remains an inchoate conception of a lack of difference, of conformity, of the capacity to blend in invisibly’ (1995: 11). Under the regime of normality everyone must fear becoming a member of the group designated as the other. It might be worthwhile to recall that ageing points out to the material vulnerability of the healthy body. Such a recognition has the potential to assert that the difference between one body and the other in terms of a normative ideal might not remain sustainable over time. while it might explain the underlying anxiety and the experiential terrain of disease that disability invokes, it is also suggestive to use Price and Shildrick’s term, ‘of the ethical fatuity of the process of othering’ (1998: 236).

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A more thoughtful politics of disability, therefore, would attempt to disrupt the norms of dis/abled identity by divulging the failure of those norms to ever fully and finally contain a definitive standard. It would be more accurate to understand identity as a production ‘which is never complete, always in process and always constituted within, not outside representation’ (Hall, 1994: 76). recognition of common political goals can definitely assist the building up of a social movement. However, the fact that the movement can be splintered by ignoring the internal differences has to be recognized. The crucial questions of how will we decide to put aside our differences? Tom Shakespeare maintains that identity politics of the disability movement is one of its fundamental failings: A more serious problem, within the disability context, is that building an identity around oppression leads the minority group into taking up a victim position. In this sense, a social model of disability can be as negative as a medical model of disability. whereas the latter sees disabled people as victims of their flawed bodies or brains, the former sees disabled people as prisoners of an oppressive and excluding society. In both versions, the agency of disabled people is denied and the scope for positive engagement with either impairment or society is diminished (2006: 79).

My submission is that identity cannot be essentialized as it has to be understood as a constant movement. As Chantal Mouffe puts it: Identity is best described as an ensemble of subject positions that can never be totally fixed in a closed system of differences, constructed by a diversity of discourses among which there is no necessary relation, but a constant movement of over determination and displacement (1992: 372).

I think the all-important query is not what ontological status implies or means. rather, what is its significance? — patronization or pride, deviance or difference and the webs of significance that are spun through human agency about these conditions. In other words, we should ask, what is the importance assigned to disability? By whom? Finally, can this understanding of difference count enough to make a political difference? Judith Butler agrees that there is some political necessity to speak as and for women (1992: 15). She is for this necessity. She says, ‘Surely that’s the way in which the representational politics operate. and lobbying efforts are virtually impossible without identity politics. So we agree that demonstration and

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legislative efforts and radical movements need to make claims in the name of women’ (Butler, 1992: 15). Further, Butler urges us to be critically queer: And if identity is a necessary error, then the assertion of queer will be necessary as a term of affiliation, but it will not fully describe those it purports to represent. As a result, it will be necessary to affirm the contingency of the term: to let it be vanquished by those who are excluded by the term but who justifiably expect representation by it, to let it take on meanings that cannot now be anticipated (ibid., 1993: 230).

She further points out the fact that, The feminist ‘we’ is always and only a phantasmatic construction, one that has its purposes, but which denies the internal complexity and indeterminacy of the term and constitutes itself only through the exclusion of some part of the constituency that it simultaneously seeks to represent (ibid.: 143).

However, many disability scholars such as Siebers have criticized scholars such as Judith Butler whose understanding of identity relies solely on the psyche. Consequently, the physical/lived body is only realized via psychic pain, namely guilt and resistance. To me, it seems that Butler’s privileging of the mind over body resonates the autonomy and dominance of the mind and rejecting the sole mimetic qualities of the corporeal being. For disability theory, the location is that physical bodies would remain weaker to mental ones, thus creating a politics of able versus disabled dichotomy. within, India such a stance sounds very familiar when a caste system is part and parcel of social life in India. The same hierarchy is similar to a setting where mental disabilities are considered low-grade to those with physical disabilities. As a psychologist, why does a political identity has to rely on individual psyche? Is it not possible to define an identity based on common interests? It is critical that defining physicality politically should not be that of an individual body. rather, the political will should be of a human body beyond the individual, like I submit that the fragile status of the ‘we’ should not worry us. The only issue at stake is that while any identity is being asserted politically, the fluidity of that identity category must be thoroughly analyzed and recognized. According to Davis, it is in part disability’s instability as a category that will allow the opportunity to ‘provide a critique of and a politics

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to discuss how all groups, based on physical traits or markings, are selected for disablement by a larger system of regulation and signification (2002: 29). So, it is paradoxically the most marginalized group — people with disabilities — who can provide the broadest way of understanding contemporary systems of oppression’. To end it seems pertinent to point that a celebration of differences can be paradoxical. In some ways assertion of specific categories based on differences reinforces the divisions existing in the given social order, leaving them unshaken. Moreover, an enthusiastic embracing of all the categories succeeds only in categorizing and not in finding resolutions. one is reminded of Audre Lorde who writes, ‘As a fortynine-year old Black feminist socialist mother of two, including one boy, and a member of an interracial couple, I usually find myself a part of some group defined as other, deviant, inferior, or just plain wrong’ (1981: 114). Though location is definitely helpful in delineating such facts of history, it leaves the problem of identity without any cross-examination. As Christina Crosby cautions, Consciously assuming a specific stand point is to assume that ontology is the ground of epistemology, that who I am determines what and how I know. But how do I know who I am? That’s obvious: I am my differences which have been given to me by history. In this circle, the differences which seem to refract and undo a substantive identity actually reflect a multifaceted, modified but all too recognisable subject (1992: 137).

I do get exhausted by the celebration of the idea that there are essential differences between disabled and able-bodied. It is true that efforts need to be made to include the marginalized categories such as disabled women who are effectively speechless, and excluded, perhaps it is better to leave these ideas in tension to resist any kind of foreclosure which could both academically and politically be unwarranted. raoul Martinez (2009) is connected to Z Communication, a community committed to social change spoke about moral issues connected to disability and other oppressions of human rights. Francesca Martinez, a stand-up comedian with a disability (cerebral palsy), was asked in 2008 to carry the olympic Torch through London as part of the international torch relay. As she agreed and the date of this relay approached, however, news of China’s human rights abuses in Tibet began to surface. Learning of these events she was unsure of what to do. Participation in the relay as a disabled woman was

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worthwhile as people with disabilities are so underrepresented in the media, but another part was concerned to highlight the abuses in Tibet and prevent China simply using the olympics as an international advertising campaign. The media began contacting some of the torch-bearers, asking for a response to the events in Tibet. Says Martinez (2009): My sister agreed to speak about these events live on Channel Four news, one of the three largest news broadcasters in Britain. Live on air she decided that to be consistent she would have to pull out of the Torch relay — she was the first torch-bearer to do so. That evening she received over a hundred emails from people around the world congratulating her for her decision. In my view, she did more for disability rights by defying societal expectations and categories, and standing up for people on the other side of the world, than she could have done by approaching the issue directly.6

Identity — the ‘we’, therefore can be very useful to change social conditions when distinct as ‘they’. If ‘we’ and ‘they’ are not connected, the two can be diverged, thus leading to individual rather than collective action. However, structuring movements is thus a fragile process, in that it is important to solidify the issues broadly enough to include underlying conditions of the issue, and yet the distinctive frame must also be concrete enough to impel action. However, it is true that identity politics rests on unifying claims about the meaning of politically laden experiences to diverse individuals. Sometimes the meaning attributed to a particular experience will diverge from that of its subject: thus, for example, the disabled person using prostheses struggles desperately to appear ‘normal’ may think that she is simply trying to be a good looking person, rather than understanding her experience as part of the imprisoning of disabled bodies in a normative culture. In one sense, false consciousness — the systematic stupefaction of the experience of the oppressed by the perspective of the dominant — is there. Though I do rely on the experiential terrain, experience, however, is never simply epistemically available prior to interpretation (Scott, 1992); rather it requires a theoretical framework — implicit or explicit — to give it meaning. If my experience has to be an origin of my politics, then there is reason to worry. I share this concern with kruks (2001) who is apprehensive about ‘an epistemology of provenance’ which indicates that politics can gain acceptability by virtue of their my experiences. If my fellow disabled’s

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experience is not the part of the politics, there would be a closure as they will not be in a position to share the experience, which in turn inhibits political discourse and coalition-building. The criticism that is attacked on identity politics is that of essentialism. In my understanding ‘essentialist’ implies that the first is the understanding of the subject that characterizes a single configuration of identity as disconnected and taking priority in representing the self — as if being disabled for example, were entirely distinguishable from being a woman. To the extent disability politics recommends enlistment around a single affiliation, it will put pressure on participants to identify that affiliation as their defining feature, when in fact they may well understand themselves as integrated selves who cannot be represented so exclusively or even discounting (Spelman, 1988). Another way of understanding essentialism is when generalizations made about particular social groups such as visually impaired in the context of identity politics may come to have a curative function within the group, not just describing but also determining the selfunderstanding that its members should have. Sometimes, the identity that is ostensibly healing may constrain autonomy as Appiah puts it, replacing ‘one kind of tyranny with another’ (1994: 163). Just as the tyrannical leader in the group insist that the other marginalized groups assimilate by mix to the heavy-handed rule, so within some practices of identity politics dominant sub-groups may, in theory and practice, impose their vision of the group’s identity onto all its members. Despite ongoing discussions of the issues of disability, the active social movements do not include the political actions related to disability. Since the onus on the activists is to fight the everyday struggles, the meanings and nuances of identity politics is not clearly understood. notwithstanding the problems of the education bill, children with disabilities for instance are included in the larger disability advocacy, but the subgroups do not come into a collective struggle. Though I have written about the advantages and disadvantages of identity politics, the question whether the notion of identity has become mandatory to disability is complicated. In a political landscape many disability activists feel that many issues such as accord, sovereignty, and respect have been lost because individuality has become significant. Many of my fellow disabled are oppressed by virtue of their membership in a particular nGo or rights group, — that is, a mutual joint whose members are not in a position to be leave or stay in the group who have been part of the group because of

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concessions or benefits, and whose prospects are sincerely fashioned by the relation of their group through privilege and oppression. For instance, if I leave the membership of the Disability rights Group, I will lose my privileges of the membership. Frantz Fanon eloquently describes the experience of being always constrained by the white gaze as a Black man: ‘I already knew that there were legends, stories, history, and above all historicity . . . I was responsible at the same time for my body, my race, for my ancestors’ (1968: 112). Conversely, members of dominant groups are privileged — systematically advantaged by the deprivations imposed on the oppressed. Many scholars feel that assimilation or integration is a direct principle of liberalism. If the liberal subject is coded in the way Young (1990) suggests then attempts to apply liberal norms of equality will risk demanding that the marginalized conform to the identities of their oppressors. For example, many disabled people do not want to include me in certain campaigns where I protest the institutionalization of marriage on the grounds that these developments assimilate sameness, rather than challenging its historical, material and symbolic terms. If this is equality, they claim, then it looks apprehensively like the erasure of socially subordinate identities rather than their genuine incorporation into the polity. This suspicion helps to explain the affiliation of identity politics with separatism. Thus, a homogeneity is required so that attempts at integration of dominant and marginalized groups on certain ideals such as marriage will consistently compromise the identity or potential of the less powerful that a distinct social and political space is the only structure that will adequately protect them. one of the central charges against identity politics by liberals, among others, has been its alleged reliance on notions of sameness to justify political mobilization. Looking for people who are like you rather than who share your political values as allies runs the risk of sidelining critical political analysis of complex social locations and ghettoizing members of social groups as the only persons capable of making or understanding claims to justice. For instance, if we look at heterosexuality we never question its normative character. In the DSM II, for instance, homosexuality was considered as a medical category. Many Queer theorists argue that the homo/hetero dichotomy is hierarchical (heterosexuality is superior and normal, while homosexuality is inferior, out of the ordinary,

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non-standard. I think what is decisive is that we are vigilant so that we continue to deconstruct the identities in question, with a political goal of their subversion As Seymour argues, health workers are repeatedly damned for the sexism entrenched in their advice on the rare occasions that it is given. rehabilitative attention focuses on issues associated with men’s bodies, and is seldom concerned with women’s bodies (Seymour, 1998: 135). The claim that disability is ‘socially constructed’, however, does not in itself mark out a specific identity politics. Indeed, the very possibility of disability and its association with ageing for instance seem to go together in everyday life. Consequently such associations may demarcate its political utility. The fact that disability in itself is highly changeable, both identification and relocation have a place in current politic. For instance, nancy Fraser criticises the domination of perspectives that take injustice to inhere in ‘cultural’ constructions of identity that the people to whom they are attributed want to reject (1997: 19). Such recognition models, she argues, require remedies that ‘valorize the group’s “groupness” by recognizing its specificity’, thus reifying identities that themselves are products of oppressive structures. By contrast, injustices of distribution require redistributive remedies that aim ‘to put the group out of business as a group’ (ibid.). Both elastic and extensible, identity political tropes continue to influence new political claims: an extensive literature approaches disability, for example, as a set of experiences of social injustice that resist the disabled and motivate a politics of disability that refuses the bequest of charity to insist that the dominant ethos should not treat disabled individuals, as a victimized class deserving of special ‘rights’. Such politics can result in bitterness, antipathy and backlash. Also, identity politics of certain constituencies such as disabled children are ignored (Ghai, 2011). It is tragic that recognizable means of oppression are further reinforce the very identities that may be fragmenting. For disabled people, global capitalism has given some advantages in form of technological changes but it has widened the gap between the developed and the developing countries. For me though, I do not see any resort to identity politics in my country; however, I do see the limits of identity politics and the issues of power are unlikely to weaken. on three consecutive protest marches organized by for an education bill excluding children with disabilities days the problem of subtle social exclusion of the ‘other’, even within the context of movements mobilizing for justice and inclusion.

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In social movements, the push is to create a sense of empowerment or agency that mobilizes groups rather than individuals. Any political struggle involving disability and its framing of identity has to begin with disability as a choice. what makes people experience disability identify politically around their disability status? If we presuppose that disabled people who support disability rights issues are aware of experiential realities among disabled persons, can we accept the fact that such people will be a part of the minority group? Also what happens when these individuals from passive acknowledgement move to active engagement in disability-related political causes? we must realize as Arthur Frank recognises that ‘the body is not mute, but it is inarticulate; it does not use speech, yet begets it’ (1995: 27). Thus when I tell my story about my body I have to listen closely to hear my own body speaking from within it. If am ‘able’ to hear this body, then I must translate my message into even an language. Thus such exclusion in group formation must be interrogated. In Chapter Five I have discussed the social construction of disability. Social constructionism has wittingly or unwittingly changed the backdrop of thinking about disability because it does not accept disabled people as flawed citizens. The central plank is that focus on the built environment expounds a collective and common cause around which they disabled may organize politically. In the last two decades or so, disability advocacy have contested the medicalized identities and created spaces in the given society. To me though there have been distinct advantages of social model, the problematic part is that social constructionists are sceptical about any form of identity. For instance, critics of identity politics do indicate that, that no two women are alike and that ‘woman’ is not a lucid political category. They also remind that most of us including disabled are marked by multiple signifiers not necessarily required by membership in a minority group. Interacting with a group of students, my activism for disability was in doubt, given the fact that as a disabled woman I was economically sound as I possess a motorized wheelchair. Their scepticism about my reality of disability advocacy, as they comprehended my surface reality. Tension is evident as politics of identity in the developmental discourse has to have the same meaning, because, equality cannot be comparative with different meanings for different disabilities. As Malik (1996) puts it, ‘If so it ceases to be equality at all, or rather

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becomes equality in the way . . . “equal but different” — in defending segregation’.7 Thus, for the disabled to be secure, equality requires a common yardstick, or measure of judgement, not a plurality of meanings. whatever the semantics, what is clear is that unless we understand disability as a socially constructed category, material inequalities will remain (Ghai, 2009). Theorists of disability have also expressed vacillation about conceiving of disabled people as an identity or minority group. For instance, usually the sign for disability is that of a wheelchair. However, the symbol is really problematic as only a minority of people with mobility impairment would use/ want the wheelchair. The fear is that a strong identity may create problems as there is a lot of heterogeneity in disability. It can be a serious concern. Though we understand that real politics will have to challenge the stronger and weaker bonds since building a movement can happen only when we interact with multiple categories of visible and invisible disability. we know certain realities because they are shared with another person. In fact, constructs are communal stories that enable people to function as a group in a larger whole. That is why social constructionism is practical — they must be useful in everyday life. In context of identity politics what is interesting is that Siebers’ has complicated the social construction of disability by claiming that situated knowledge relies not only on changing perspectives but also on embodiment. From the feminist lens, though social construction is helpful, it can only give the stories that are not personified. ‘Living with disabilities may know more than most’ (Ghai, 1998: 36). These concerns of pain, fatigue, depression, and uncertainty do not find any resonance within the social model of disability. Yet these are the experiences, which set disabled people apart from other socially oppressed groups. In one important respect, there is nothing problematic about other marginalized categories as embodiment: sexuality, sex and skin colour are neutral facts. In a striking contrast, impairment actually signifies that the experiential realities the body can be intrinsically unliveable or difficult. Thus, conceptualizing disability, as a social oppression might not be an appropriate theoretical framework for understanding the finer nuances of a life marked with disability. It is imperative to understand that though social constructionism is helpful to notice disability as the effect of an environment hostile to some bodies and not to others, necessitating

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a model that works on social justice rather than medicine. Siebers puts it beautifully: Thanks to the insight that the body is socially constructed, it is now more difficult to justify prejudices based on physical appearance and ability, permitting a more flexible definition of human beings in general. It is a rather wonderful example that Blind hands envisage the faces of old acquaintances. Deaf eyes listen to public television. Tongues touch-type letters home to Mom and Dad. Feet wash the breakfast dishes. Mouths sign autographs (2008: 54).

Human body is a location of birth, growth, ageing and death, of pleasure, pain and offers the material prerequisite for subjectivity, thought, emotion, and language. It is only through interaction that multiple experiences such as impassioned kissing, senseless killing, dancing, sharpening in exercise and disciplining, including surgical modifications that utilize attempts such as tattooing and piercing, do bodies differ, in their uniqueness. whilst some can touch fingers to their toes, dance all night, many who cannot walk, see, hear, or speak. For us, disabled bodies are awkward, reeking, muddled, dependent, untrustworthy, and different in their mobility, language and discourse. what is significant is that disabled bodies are complicated to find in social constructionism, as the usual tendency is to dismiss the body, though a detailed analysis of the discourses of bodily matters is an academic matter. According to John Cromby and David nightingale: Studies of discourse typically proceed as though their raw material was not already the product of embodied beings, in seeming ignorance of the fact that talking is not the only form of interaction. In continually either ignoring the body or treating it as mere metaphor or text, social constructionism is difficult to understand and downplay the significance of its functional, physiological, hormonal, anatomical and phenomenological aspects. not only does constructionism have no notion of the body to call its own, it views other approaches to the body with deep mistrust, branding them as biologistic, cognitivist or essentialist. It then has little choice but to implicitly reduce the speaking bodies we meet and find ourselves to be to mere discursive traces, transcribed echoes of their actual fleshy substance (1999: 11).

In its weak sense, the conjecture is that the dominant ideas, attitudes and customs of a society influence the perception of bodies.

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In a normative and ablest society, for example, fat people may feel uncomfortable seeing themselves in the mirror, while in an ablest society passing civil rights legislation to permit greater access for disabled people is patronizing or the understanding that they do not wish to enter ‘normal’ society. In this sense, the problem of social construction is that it assumes a rationality to visualize how people victimize individuals unlike them. In one sense, political elucidation of disability does not question the ideology of ability. what is painful is that a blind body becomes the only way of representing the personhood. There is no other way in which we can comprehend the damaging reduction of a body to its disability. Sometimes the eloquence of the scholars who are sensitive are always ignorant of the socially constructed nature of the language, which in using words such as cripple, blind, deaf, etc. are not open to interpretation. within the Indian society and I am sure elsewhere, stairs for both disabled and non-disabled have been a part and parcel of our lives since architecture in India is not sensitive to the issues of disability. A socially constructed notion of disability can be understood as a bad match between social design and some human bodies. But disability may also trouble the theory of social construction, as strong constructionism either fails to account for the complicated embodiment as the fact that once a specific mobility mode changes; for instance, in getting a motorized wheelchair, the bodies do not remain predictable, unquestioning and unrecognizable to them. As Siebers, indicates: These include the habits of privileging performativity over corporeality, favouring pleasure to pain, and describing social success in terms of intellectual achievement, bodily adapt-ability, and active political participation. The disabled body seems difficult for the theory of social construction to absorb: disability is at once its best example and a significant counterexample (2008: 175).

My contention is that the body does not have to be fixed or grieved, but treasured as an aspect of human variation. However, this appraisal of alive knowledge, is attacked by the overbearing normative ideology that sees the body as frail and transience. Social construction, despite its pre-occupation with political ideology, clings resolutely to a psychological model based on the autonomy of the individual rather than developing one designed to address political community.

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It seems to agree with liberal individualism that emancipation from repression relies on the intellectual and emotional resources of the individual but claims that individuals affected by pain and suffering are irrevocably impaired for political action. As for social construction, Siebers recognizes that although experience is constructed through social attitudes and prejudices, the identities produced within such conditions are ‘real’ and valid for purposes of public policy, community formation, and jurisprudence. In other words, it is possible to adopt a social constructionist theory of experience for disabled people while respecting the legal claims based on this experience. within the framework put forward by disabled feminists from the west, this anomaly of linking impairment with the biological has been a cause for concern. The fear has been that recognition of the pain of impairment does not negate the fact that people with difference may be discriminated against collectively. Thus, both rationally and politically, there is a need to recognize that many disabled people are indeed challenged by acquired impairments. Impairments cannot be resolved only through legislations. Though essential, provision of services and accessible facilities alone cannot challenge the ablest hegemony; a change in the societal attitude towards a more positive construction of disability has to be coupled with the battle of rights. It is much simpler to talk about and devise strategies of discrimination in employment and education than to talk about our experiences of exclusion from sexuality and reproduction. Some disabled people would even like to be cured of, or at least experience some respite from their condition. In fact, a realization of the embeddedness of disability in impairment, adds to an understanding of the complexities of a disabled person’s identity. what is painful is that social movements including the disability movement tend to focus on what is known as the ‘lowest common denominator’ politics. As an activist I find it very difficult to hold multiple identity categories. If the movement wanted to become collective by including other categories such as the danger is that the movement will be weakened. In his article ‘Hiroshima, the Holocaust, and the Politics of exclusion’, Gamson explains Patricia Hill Collins’ notion of thinking about ‘both/and’ rather than ‘either/ or’ identity categories: rather than a model in which each struggle is defined by a single identity, the problem is reframed as a generalized ‘matrix of domination’

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that makes certain dimensions relevant for particular individuals in particular struggles. what is shared here is the challenge to systems of exclusion rather than to a single exclusion shared by all. Unlike an identity in lowest common denominator politics, in which one is asked to accept a particular collective identity as primary, this alternative allows for the interaction of multiple systems of domination that may differ for participants with different backgrounds and experiences (2000: 12).

Thus, my apprehension is that though identity politics is working to resist the disability oppression and powerlessness, recovering and altering negative images used by advocacy groups so that positive images of self and community are built. In one such sense, the markers that supposedly defines the community are fixed to the extent that they harden and release a process of in-group essentialism that often denies internal dialogically within and without the group and itself becomes a new form of closure and oppression. My interaction on a discussion regarding the pros and cons of a mentally challenged girl who was raped is an example of freedom and oppression.8 In India we find that despite adoption of a liberal democratic polity after independence, communities and collective identities have remained powerful and continue to claim recognition. It is true that identity politics promotes a victimized mentality. However, for me there are no easy answers as identity political tropes continue to persuade various political claims. As a disabled person, I have gone against the notion of charity to emphasize that exclusionary social practices are to be considered and the ‘special’ or differently abled challenged can be rejected. Similarly, the questions that hit us on face whether politics of identity can comprehend the issues of children, both disabled and non-disabled? I have discussed the limits of identity politics. while it is true that I write from a clearly marked location, I speak and write as a disabled woman and I speak for disabled people. I have tried to understand the nuances of identity politics, my sense is that I will never be able to give a definite answer to whether the perils of identity politics are to be understood or whether politics of identiy in India is viable? Though there are threats of identity politics as it is cast as bonafide to the self or group that is, in fact, is defined by its opposition to an other. In one sense reclaiming the disabled person’s identity tends to underpin dependence on this dominant other and creates internalization an

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oppressive relationship. As a political scientist but more important as a feminist nivedita Menon reflects: The term is often used critically by those who think that progressive politics is better conducted through the unmarked label of ‘Indian citizen’, rather than an identity such as ‘woman’ or ‘Muslim’ or ‘Dalit’ or ‘homosexual’. But believe me, you have to be pretty damn privileged if you can afford the luxury of that unmarked designer label of ‘citizen’. only if you are thoroughly protected by your class position can you forget that you are any of those identities, and even so, most upper-class women and non-heterosexuals and Dalits and Muslims know to their cost that they can shout for all they are worth that they are simply ‘citizens’ — they continue to be stigmatized by their ‘identity’, whether they like it or not. This is not to say that all forms of identity politics are by definition democratic, because there can be anti-democratic assertions of identity. But by the same token, not all forms of identity politics can be simply denounced without taking into account how they define themselves with reference to the larger society (The Telegraph, 2004).

As a disabled person, I do understand and acknowledge the specificity of local concerns and approaches — and the consequent resistance to such issues. However, the question about whether there is a universal thesis or in other words is there a universal human response of revulsion or disquiet to atypical embodiment? My answer is uncertain as a part of me fantasises that the prospect of a society where values are differently formed and disabled people will not be considered as ‘inferior’ or ‘secondary’ being. while as a disability activist in the Indian scenario, I definitely wish to challenge the biological determinism inherent both in disability and gender, I am exhausted by the celebration of the idea that there are essential differences between disabled and non-disabled or disabled women and non-disabled women. It is true that efforts need to be made to include the marginalized categories, such as disabled women, who are effectively speechless and excluded, perhaps it is better to leave these ideas in tension to resist any kind of foreclosure which could both academically and politically be unwarranted. Certainly, social movements and disciplinary frameworks need to become sensitive to the issues of difference. To quote Hannah Arend: everybody sees and hears from a different position. This is the meaning of public life . . . only where many in a variety of aspects can see things without changing their identity, so that those who are gathered around

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them know they see sameness in diversity, can worldly reality truly and reliably appear . . . The end of the common world has come when it is seen only under one aspect and is permitted to present itself in one perspective (1958: 57–58).

Thus, the issue is not of deciding which is the most oppressive reality or the worst evil. what is problematic is the fragmentation, which is itself a part of the predicament. It mirrors the linear social order made up largely of patriarchal thoughts, overlooking the deep complexities of human existence. It is absolutely essential that one understands that any identity is composed of different components out of which, political, cultural and individual are extremely significant. what is needed is a process in which development takes place to override a pessimistic self-image with impairment, with a positive self-image with disability as social exclusion. while a collective awakening is definitely needed, it can be coupled with a process of personal growth. I strongly believe that both the collective and personal have to be conjoined together to bring about a change in the quality of life of those labelled as disabled.

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notes 1. I recently came across an eight-year-old beggar. Confident and outspoken, she said, ‘Luli Madam tu to kuch de’ (that is, lame madam, at least you give me something). It was interesting that though the title of madam signifies power, the beggar’s conviction was that I ‘have to’ give her alms as a part of the penance of my disability. 2. Taare Zameen Par, a sensitive film on educational context fails to disassociate with the notion of ability. 3. Personal communication with Sarla on 26 october 2008. 4. Available at http://nfb.org/images/nfb/publications/bm/bm09/bm0903/ bm090305.htm (accessed on 14 march 2010). 5. Please see the details in Chapter Four in this volume. 6. Available at http://www.zcommunications.org/a-moral-movement-byraoul-martinez (accessed on 12 January 2010). 7. essay on the real value of diversity, ‘race Pluraism and the Meaning of Difference’. Available at cited in http://www.kenanmalik.com/papers/ new_formations.html (accessed on 4 December 2014). 8. See my concerns about Jeeja Ghosh in Chapter Four.

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eight

Need for a Paradigm Shift: Conceptualizing Disability Studies An intellectual? Yes. And never deny it. An intellectual is someone whose mind watches it. I like this, because I am happy to be halves, the watcher and the watched. ‘Can they be brought together?’ This is a practical question. we must get down to it. ‘I despise intelligence’ really means: ‘I cannot bear my doubts’. — Albert Camus

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he previous chapters are a record of the lives of disabled people in India who have lived and continue to live a difficult life. Despite the fact that legislations in the USA or the Uk do have the similar concerns, however trajectories of developing countries are significantly different due to a large population and multiplicity of marginalization. not surprisingly then, disabled people’s history in India is largely a history of silence. In the second chapter I have highlighted the cultural understanding of disability in India per se. I underscore once again the fact that disabled people have not only been constructed as ‘other’, but frequently as ‘the other’ of ‘the other’. I find that people with disability are marginalized even by those who are they considered to be marginal in social contexts such as those concerning caste and women’s issues. It is not easy to comprehend where our ‘constructions’ end and reality begins, for most often our constructions shape our understanding of reality. one unquestioned way of understanding inclusion of disability in India has been in a way in which disabled people have been their treatment as children of a ‘lesser god’ — a status that provided spaces, in spheres of religious and metaphysical discourses, where the ability to transcend the body stood out as a distinct possibility. By not acknowledging the centrality of the physical body, these alternatives did provide the possibility for a dignified negotiation of difference. even though assigning such a status to disabled people implied the sacrificing of their materiality of bodies in the service to God, such narratives did offer a metaphysic that was more humane than the oppressive lives that characterized disability. However, a position

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that provided such space traditionally may not have the same implications in present day India. A recurrent change in the meaning of the body in a neoliberal India raises significant questions about the whole notion of transcendence of the body and its location in the patriarchal discourse. Such an understanding has been erased from western academic disability history. In India the struggle to achieve the rights of the disabled is not constricted by the need to recreate a specific disability culture. Instead, while there is an empathic stance in the family along with violent oppressiveness, the history of disability in India is now characterized by several models of disability: the religious/charity model of disability, the medical model of disability and the social model of disability (see Chapter Five). Though such constructions of disability have set the parameters for responding to disabled people’s status and services directed towards them, yet their essence remains constant, which is of being treated as the ‘other’. To understand this further, in the following section I discusses the implications of the process of ‘othering’ in some detail.

otheRinG An important question we need to ask ourselves is whether disability can be understood without undertaking a process of rethinking and reflecting on the nature and compulsion of categorization in social discourse. Perhaps, it would help to understand the nature of social categorization first. The practice of talking, writing or any other way of expressing opinions about people as members of collectivities falls within the domain of the study of social categorization. For most scholars of social inequality, struggles around material conditions take place not only in the social, economic and political realm, but also in ideological realms that interact with the structural factors and processes of instituting social reality. Some of the dividers have been race, caste, ethnicity, and gender. In one sense, it is fruitful to understand the similarities and differences at the level of ideological construction. For instance, systems of inequality based on caste, race, ethnicity, and gender seem to rely on dichotomies, such as ‘Us’ versus ‘Them’, ‘Self’ versus ‘other’ or ‘one’ versus ‘other’, meaning not only difference and opposition but also superiority and inferiority. In such dichotomies, the primary term corresponds to the subject, while the opposite (‘other’) is reduced to

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the object, which leads to denying the ‘other’ personhood or even humanity. In each case, ideology also tends to define the essence of social categories. The material of construction consists then of natural predispositions as well as character and cultural traits. 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 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 a predominantly liberal humanist view of the subject (Stuart, 1999). The other is not simply a description of simple individual differences but refers to the regulated construction of classes of people. Alterity leads to the creation of prejudice and stigma. Initially the attempt is to construct some group as other and less than fully human. The next step involves projecting onto it those ‘disabled’, qualities we reject, fear, or disown in ourselves. It is not difficult to pin point ideologies that permit us to think of ourselves as ‘normal,’ good, or worthy, and to think of others we perceive to be not like us in some way — physically, mentally, educationally — as disabled, and therefore not normal, not good, or not worthy. Then we assign qualities to variable human individuals based on their inclusion in this constructed alterity. Hughes (2000) describes the construction of disability as a process of ‘invalidation’, an ‘othering process that has both produced and ‘spoilt’ disability as an identity’. He goes on to argue Validity is at the heart of the process of othering. It is the question posed by it and cultural meanings about what constitutes ‘the natural’ — conceived as the inescapably true — is the ground upon which validity is assessed. To be or become invalid is to be defined as flawed or in deficit in terms of the unforgiving tribunal nature and necessity, normality and abnormality over which medical science presides (2000: 558).

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nullification of disability therefore marginalises people \whose disabilities are either more extreme/noticeable or rare, which puts some people at a major disadvantage from birth. This marginalization not only puts disabled people at a drawback but also prevents society in general from directly experiencing the lives of the disabled. Ludmilla Jordanova comments, The idea of otherness is complicated, but certain themes are common: the treatment of the other as more like an object, something to be managed and possessed, and as dangerous, wild, threatening. At the same time, the other becomes an entity whose very separateness inspires curiosity, invites enquiring knowledge. The other is to be veiled and unveiled (1989: 110).

In this context, I believe that the work of Albert Memmi on The Colonizer and the Colonized (1967) serves as a useful benchmark in understanding the process of alterity. reading Memmi strengthens the argument that those of us who have been marginalized by our respective disabilities, enter the life space of the more complete ‘other’ from the position corresponding to that which the colonized holds in relation to the colonizer. Taking over from the portrait that he draws of the ‘other’ as it means to the colonizer, the colonized emerges as the image of everything that the colonizer is not. every negative quality is, thus, projected onto her/him. Most fundamentally, my contention is that the creation of a devalued ‘other’ is a necessary precondition for the creation of the able-bodied rational subject who is the all-pervasive agency that sets the terms of the dialogue. There are many significant aspects that need to be noted in this description by Memmi. In fact they may seem familiar to many of us who share a disabled existence. First, the other, is always seen as ‘not’, as ‘lack’, as ‘void’, as someone lacking in the valued qualities of the society, whatever those qualities may be. Second, the humanity of the other becomes ‘indistinct’. Third, the others are not seen as belonging to the human community, but rather as part of a muddled, confused and nameless collectivity. They carry, according to Memmi, ‘the mark of the plural’. In other words, they all look alike. This is indicative of the cultural hegemony that strives to posit an autonomous able body. It is interesting that scholars who have lived with disabilities have also used metaphors to share their experience of disability. For instance disability, has been compared to ‘exile’ (Clare, 1999; Michalko, 1999), ‘internal exile’ (Ingram, 2003)

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and also presented as a form of ‘apartheid’ (Ghai, 2003; Goggin and newell, 2004). Similarly, the treatment of people diagnosed as having psychiatric impairments has been presented as a form of ‘slavery’ (Szasz, 2003); and disability has been positioned as a form of ‘diaspora’ (Thrower, 2003). As a student and teacher of psychology, Szasz believed that there was a nexus between examination treatment and confinement at the core of psychiatric prejudice and intimidation. Says Szsaz, ‘few people believed or believe in equal human status for blacks and whites. In the past the result was slavery and Jim Crow laws — separate but equal today the result is affirmative action and racial quotas. Similarly few people believe in equal human status for mental and non-mental patients. The result is psychiatry as ‘psychiatric Jim crow laws -unequal and separate’ (Szasz, 2003: 33). The archetype is the Jim Crow system, which denies participation in the public life of the community to people who are socially defined as disabled. education and employment are the classic cases of exclusion but in many other areas of life, such as movie theatres, restaurants, local transportation, and other places of public accommodation, disabled people are simply not to be seen, except in segregated group environments. Thus, the patterned exclusions create a huge group-centered pattern of ablest supremacy.

Role of MetAphoRs A more subtler and, consequently, dangerous strand to my mind specifically in the Indian context and elsewhere has been the understanding of disability as a root metaphor. It is generally accepted that we live our lives within the cultural maps that are entrenched within us. embedded within this cultural map are the root metaphors that allow us to function on a day-today basis. These root metaphors ‘provide a conceptual and moral coherence to a culture’ (Bowers, 2000: 27). Pepper (cited in Hermans & kempen, 1993: 11) proposes that our personal narratives are structured according to our hypotheses about our world which are derived from our basic or ‘root’ metaphors that guide our thinking and perceptions on which we base our particular view of reality. operating both consciously and unconsciously, these root metaphors are reproduced through the linguistic process. even if we do recognize them, they are often so deeply ingrained within our thought

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processes that we do not always recognize their influence on our behaviour. For example, in cinema in India as well as in the west villains are always ugly and deformed. In contrast, heroes and heroines are portrayed as beautiful and graceful. If they have a disability, it is usually overcome by either medicine or magic. The metaphor of the disabled as helpless victim is as common as the gesture of asserting power by roughing up a disabled person; metaphors are thus ubiquitous. People who are politically correct in their usage of terminology in different contexts do not think twice while using terms such as difference blind, culture blind or are you blind. For instance, Simi Linton (2007) brings the unfortunate negative connotations of metaphorical blindness. According to Stephen Pepper, once a metaphor has served to make sense of an event, it tends to become submerged, to appear as a genuine entity, and to become reified. Those who come to understand events through a particular metaphor may cease to become aware of the metaphor itself. I think disability has been understood more as a metaphor, rather than lived reality. This is clear even from the mere ‘definition’ of disability provided in the Person with Disabilities Act of 1995 — the major law in India dealing with disability — which simply lists the various disabilities recognized for the purpose of the Act as the meaning of the term disability itself. elsewhere, this has been corroborated by many scholars who have underscored the fact that more often than not disability is present but only as a way of understanding of other life conditions. The representation in Bollywood (the Hindu film industry are cultural portrayals of disability, which are usually enacted by non-disabled people and their reactions to disability, rather than about disability itself. Many western scholars (Thomson, 1997; nicole Markotie´, 2007) have highlighted the symbolizing power of visible and invisible impairments in literature and art. Metaphors thus provide powerful instruments of thought by comparing nascent ideas to known entities in order to bring clarity and richness to the idea struggling for existence. Being able to make the unknown known is a particularly important task, and most often metaphors enable the connections to be made so that understanding can be achieved. Thus, as Davis asserts, ‘most scholars still consider disability an anamorphic lens displaying distorted or grotesque subjects who are rather more ‘them’ than ‘us’ (2002: 44). The continuous use of disability as a source of cultural meaning has been well documented in films, literature, popular culture and

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folklore, and fairy tales. In these contexts, authors’ and screenwriters’ understanding of disability operates as a form of what Mitchell & 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. Consequently disability is a metaphor for the message that the non-disabled writer wishes to get across, in the same way that ‘beauty’ is used. In doing this, the writer draws on the prejudice, ignorance and fear that generally exist towards disabled people, knowing that to portray a character with a humped back, with a missing leg, with facial scars, will evoke certain feelings in the reader or audience. The more disability is used as a metaphor for evil, or just to induce a sense of unease, the more the cultural stereotype is confirmed (Morris, 1991: 93). Use of such metaphors, served as a tool which strengthened the association of disability with oppression, need for care and segregation. That the process has been fairly universal is evident when an association between a hunchback and evil intentionality is made. That the process has been fairly universal is evident when an association between a hunchback and evil intentionality is made in richard III1 and Manthara.2 Similarly, Maugham uses Philip’s clubfoot (in Of Human Bondage) to symbolize his bitter and perverted nature.3 Mitchell and Snyder argue that disability pervades literature as ‘an opportunistic metaphorical device, ‘which differentiates characters from normative categories (2003: 47). The use of disability metaphors, they suggest, has been a ‘crutch upon which literary narratives lean for the representational power, disruptive potentiality, and analytical insight’ (ibid.: 49). My submission is that ablest metaphors tend to be used in academic conversations as evidence of innumerable undesirable qualities or attributes. As Lennard Davis reminds us, academics ‘routinely turn a deaf ear or [the fact that arguments] are lame or a political act crippling’ (2002: 87). Unfortunately, scholars within interdisciplinary areas of study as well as those in the traditional disciplines, have been slow to recognize disability studies as a legitimate area of inquiry. This inability to analyze disability through a critical lens further indicates that the problems with passive empathy or analogic bridging, and assuming of the reversibility of experiences. As Iris Marion Young prompts us, ‘the idea of reversing perspectives assumes that the perspectives

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brought to a situation are equally legitimate, where structural social injustice exists, this may not be true’ (1997: 48). Vivian M. May and Beth A. Ferri have assisted me in outlining some valuable metaphors that are associated with number of disabilities (2005: 125). For instance, Lois keith’s poem proposes a demand to substitute ‘striving ambulist metaphors/of power and success’ (which contain standing on your own feet, making great advances, standing up for yourself, and standing tall) with alternatives that mirror her way of being and moving through space (ibid.: 57–59). My grandmother would say a blind person saw from the mind’s eye or else would use Surdas (who was incidentally a great blind poet) Correspondingly, kleege educates us with a listing of common figurative uses of the word blind — blind faith, blind trust, blind spot, blindside, blind leading the blind, and following blindly (1999: 21–22). nancy Mairs also underlines ‘the extent to which we equate physical vigour with positive moral qualities: [keep] “your eyes open” (attentiveness); . . . [stand] “tall” (pride) . . . “see eye to eye” (accord); “run rings around” (superiority)’ (1998: 215). Contrariwise, Mairs notes, ‘physical debility connotes vice, as in “sit on your ass” (laziness), “take it lying down” (weakness), “listen with half an ear” (inattention), and get left “without a leg to stand on” (unsound argument)’ (ibid). Metaphors for disability have affected ways of thinking about and inter-relating with disabled people who have had little say in the choice of metaphors that writers have used to describe disabled bodies. The impact of these metaphors has leaded to disabled being treated as other. However, in my belief: It is true that analogy is a theoretical device that is meant to enable the move from more familiar to relatively unknown terrain in order to understand how a set of relations evident in one sphere might illuminate the other (Ghai, 2003: 69).

However, if a comparison is made or drawing a parallel pits one set of relations against the other, the strategic advantage of the analogy gets lost. without devaluing the metaphorical moves, we need to focus on what gets ‘valorized’ and ‘suppressed’ in the process. Such analogizing results in a suppression of the harsh reality of disabled people’s lives, which are limited by conditions that are much more difficult than ordinary to transcend. A shift from the theoretical/

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metaphorical to the material is essential to render visible the ‘constructions’ that have supported the currently flawed conceptualizations of disability. In fact a careful analysis of such metaphors is required to unearth their meanings and functions, so that their power can be subverted. The need becomes urgent because non-disabled people’s metaphors of disability have alienated the experience of disability, and of having disabled bodies. Disabled people have never been consulted as to which metaphors depicted life as they live it. This is not to suggest that all metaphors have gone against the disabled people’s lives. The problem lies in recognizing the limitations of using metaphors as a means to order our lives. In order for them to truly work, metaphors have to be every bit as complex, subtle and nuanced as the reality they are attempting to describe. My concern is that the conceivable pitfalls or closures created by analogic bridging have been ignored or brushed aside in the name of utility. The idea is not to find a fault in metaphorical understanding, but to underscore the lives of people who are understood as metaphors. If at all, in India I have heard intellectuals resort to the reassuring metaphor of the glass half full or half empty, which in my understanding completely misses the point of disability. As Davis (2002: p. 87) rightfully wonders if ‘critics of the future will be astounded, puzzled, and disturbed’ that works by some of our most known and highly regarded critical scholars ‘managed to steer so completely away from any discussion of disability’. The invisibility of disability is complete ‘with the medical lens fixed on the individual and his or her disability, the larger political, economic, and material forces at play in the able-ist society fall somewhere outside the frame’ (ware, 2001: p. 107). The emphasis on the dependence of the disabled, is reinforced by the Indian state resulting in stereotyping of disability that bring out pity, fear and patronizing attitudes in society. Usually, the impairment is focused on, rather than the needs of the person. The power to change the condition of disabled people seems to lie with the medical and associated professions, with their talk of cure and overcoming. From the vantage point of disability advocacy, care is not enabling. Ghai (in press.)From the vantage of India, disability in the present time is not actually associated with the incarceration of disabled people imprisoned in ‘total institutions’ constituting them as objects of medical scrutiny (Hughes, 2000). rather the disabled’s quality of life is never equal. As a result disabled people are expected to see

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their impairment as their problem, something they will have to make the best of and accept that there are many things they cannot do. often, disabled people’s lives are handed over to these professionals. Their decisions affect where disabled people go to school; what support they get; where they live; what benefits they are entitled to; whether they can work; and even, at times, whether they are born at all or allowed to have children. Disability has been, unswervingly, interpreted as an entirely bodily and/or medical state of deficiency. Medical-model understandings of disability also denies the ways that science and medicine are ‘inside’ culture, not pure, objective sets of practices impervious from any imprint of power, culture and identity. In contrast to the medical model, activists accept a social model of disability that views people with disabilities as a minority, group subject to prejudice and oppression. This model relocates the problem of disability such that, rather than being a medical or mental health concern, disability becomes an issue of policy-making and political advocacy. I have detailed out the models in the Chapter Five on theory. It is here, in this connection, that we can talk about a paradigm and paradigm shift.

pARAdiGM shift A paradigm is a worldview that controls the way we understand the world in which we live. within the various ways disability has been understood as medical, cultural, social, charitable, and human rights issues. In fact, Pfeiffer has given nine interpretations or versions of the disability paradigm: (a) the social constructionist version as found in the US, (b) the social model version as found in the Uk, (c) the impairment version, (d) the oppressed minority (political) version, (e) the independent living version, (f ) the postmodern (post-structuralist, humanist, experiential, existential) version, (g) the continuum version, (h) the human variation version, and (i) the discrimination version (2001: 32). what, then, is the disability paradigm? It is my contention that a disability paradigm should have multiplicities of understanding of disability along with an engagement to recognize disability as an epistemology in its own right. within the academia, disability remains absent in academic theorizing, especially in India. The vantage point that I am exploring can be best

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understood by posing the primary question as follows: how do we come to know disability? Moving away from the multiplicity of understanding in medical or social paradigms, disability should be understood as knowledge creation in order to establish an epistemic base of knowledge on disability. Using the notion of paradigm in the quasi-popular implication that it has acquired over the last 40 years to indicate a basic accord among scholars of a observable fact that defines the legitimate problems and methods of a research field, this vantage point implies a shift in the paradigm. T. S. kuhn used the term paradigm to refer to the conceptual frameworks or worldviews that form the foundation for a scientific community’s research and practice. The term paradigm shift is often used for a major change in a certain thought-pattern, often a radical change, replacing the former way of thinking or organizing with a radically different way of doing the same. well-known examples of paradigm shifts are the Copernican revolution, Darwin’s theory of evolution by natural selection and the transition between the worldview of newtonian physics and the einstein-ian relativistic worldview. even though paradigm shift have taken place in science and social science discourses, disability continues to be ignored. In one sense there was no single paradigm that characterized the understanding of disability. It is important to point out that usually disability is assessed only in utility, following a ‘mechanistic/ reductionistic heritage’ of the newtonian paradigm, noted by Heshusius as conceptualizing individuals with disability only by their disability and the assumption that they have no worth (2004: 37). The utilitarian and empirical paradigm, the ‘scientific–technical model, rely on a notion of disability. This notion of disability leaves out issues of dignity, intrinsic worth, and the virtues of individuals with disability. In the utilitarian paradigm one’s worth is only measured by its contribution of society and others. Individuals are not treated as ends in themselves, whose dignity is to be respected. Such paradigms may be ‘taken-for-granted’ for a long time but eventually anomalies occur and a new theory or model is proposed, which leads to the rejection of old assumptions. kuhn refers to the process of replacing one conceptual framework with another as a ‘scientific revolution’. Scientific revolutions occur during periods where at least two paradigms co-exist, one traditional and one new or ‘revolutionary’. The theories and concepts each paradigm uses to understand and explain basic facts and beliefs are incompatible;

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community members are not able to embrace both worldviews simultaneously. eventually, the traditional paradigm is discarded in favour of the ‘new paradigm’. This movement from the old to a new paradigm represents a paradigm shift. This shift mandates a look at the paradigm through which disability should be understood, in contrast to the one it replaces. Also to know where we are going is not possible unless we know where we have been. Paradigm shifts can be understood by what Argyris (1993) refers to as ‘double-loop’ learning and ‘single-loop’ learning. The latter changes only the surface behaviour whereas the former tackles the ‘underlying programme or master programme. Double-loop learning prompts people to reflect and test the assumptions implicit in their mental models’ (knight, 1998: 2). However, through consideration of the critical interpretative work of disability studies scholars, there can be an extension of the conceptual breakthroughs that lead to a ‘real’ paradigm shift, so that we understand about disability in a way in which filtering out of the understanding that does not fit with the current world view is comprehended. I would agree that the term disability is a complex term and there is no commonly accepted way to identify, define or measure disability. within a given paradigm, understanding of disability can be done at three basic levels at: the ontological, the epistemological and the experiential. Thus, the implications are as follows: what is the nature of disability? what causes it? And how is it experienced? The term epistemology comes from the Greek word epistêmê, that is, knowledge. Simply, epistemology is the philosophy of knowledge or how we come to know. epistemology is intimately related to ontology and methodology; as ontology involves the philosophy of reality, epistemology addresses how we come to know that reality while methodology identifies the particular practices used to attain knowledge of it. epistemology poses the following questions: what is the relationship between the knower and what is known? How do we know what we know? what counts as knowledge? Understanding disability for me is the subject matter of epistemology not simply the differences that exist in human behaviour, appearance, functioning, sensory, and cognitive, but, more crucially, the meaning we make of those differences. The politics of knowledge creation is a serious dimension in understanding the structures of control and exclusion.

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In the previous chapters I have traced the emergence of disability. As I have discussed earlier, the social model made an important distinction between disability as socially constructed and impairment as ‘the bodily dimension’ (Goggin & newell, 2005: 28). It also questioned the way in which disability and handicap are constructed through society (oliver, 1996) and suggests that disability is created through social institutions, structures, interactions, and relations. The social model contests the idea that the ‘problem’ of disability lies with the individual and shifts the gaze from the ‘problematic individual’ to society by ‘locating the required interventions within the realm of social policy and institutional practice’ (Humpage, 2007: 215). In my understanding, there is a movement from the medical to the social, framed in cultural contexts, still fails to present an understanding of disability as legitimate knowledge. This is critical as knowledge and the study of disability should question not only issues of medical cure or rehabilitation perspectives but also as a social category on a par with , gender, class, caste, race, and sexual orientation. The understanding of disability and its academic connotations continued to expand into the 21st century in the west after the International Year of Disabled People in 1981 raised disability as a human rights issue. The study of knowledge of disability and consequent epistemology addresses the questions of how we come to know and what we can know. It took me some time to understand the connections between knowledge, authority and power. As I grew up, I realized that discourses of power with its nuances of constraint and repression, are always contested in the institutions and academia. Indeed, the close relationship of ‘legitimate knowledge’ with politics has been an ongoing challenge that is faced by those who are marginalized and disfranchised. I am drawn to a very critical epistemological question as to ‘what counts as knowledge?’ This epistemological question matters greatly in Delhi University in which there was no public debate and academic reflection on questions related to disability. The absence of epistemological debate in disability resonates with what Dewey called ‘the weary treadmill which [philosophers] pursue between sensation and thought, subject and object, mind and matter’ (1969: 6). The treadmill runs repetitively onward, spinning out theories of knowledge but with no understanding of disability.

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According to Dewey, ‘The epistemologist’s problem is, indeed, usually put as the question of how the subject can so far ‘transcend’ itself as to get valid assurance of the objective world’ (1976: 122). I believe that scholars in the west and currently in India are keen to grasp the epistemological question on disability. However, the tragic part is that there is no constant debate over the production of know-ledge about disability and whether it should be privileged within the academia. A list serve for disability in India was initiated about two years back. exclusivity in disciplines has lead to the collection of some forms of knowledge resulting in selective ignorance that stems from these choices and can promote some socially important policies or perspectives or value systems rather than others. As a young student, a teacher who taught me epistemology narrated a famous story told by various eastern religious traditions about six ‘blind men’ (sic) who encounter an elephant. one blind man (sic) feels the elephant’s trunk, another one encounters the tail, another one feels its side, and so on. As a result, they come to widely diverging accounts of what an elephant is like. The teacher suggested that something similar could happen when academics explore some facets of a complex phenomenon while largely ignoring others. In the last three decades, this story 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 explicit political action. The academics at Delhi University have no qualms of parking their car in spaces, which are reserved for disabled people. notwithstanding the problems inherent in the multiple issues of access, the understanding of disability however has not been considered worthy of discussion. A host of scholars would talk about a myriad of systemic problems such a political systems, economic injustice, corruption patriarchy and global warming. However, when I want to engage with the academicians about the systemic exclusion of people with disabilities, the issue is negated. More so, when I ask a question on the politics of disability the usual answer is ‘Yes you are right’ but my concerns and observations are dismissed. Many such aborted interactions have taught me that the silence of the able–world is a very clear political strategy I say this with conviction for when I speak up, I am silenced and my opinion is disregarded and ignored. As Minow

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noted, the ‘inattention itself does communicate a message of relative disinterest or complacent disregard’ (Minow, 1989: 117). Sometimes as a disabled woman, I am ‘given’ a voice but urged to speak and express their views and perspectives in the name of tokenism. Trinh Minh-ha aptly calls this phenomenon ‘the voice of difference that they long to hear’ (1989: 88). I realized that understanding of disability is intimately connected to study of ignorance, 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’ (Proctor and Schiebinger, 2008: vii). My University, like others, remains a site where not only knowledge but also a middle- class orientation with its patriarchal, neo-liberalism and normative values are produced and reproduced. A revealing example is given in the conversation between Bryan Magee and Martin Milligan, in which Magee simply disagrees with Milligan’s report that, although almost blind from birth and without visual memories of experiencing specific colours, he fully understands the meaning of ‘red’ (Magee and Milligan, 1995).4 Thus, Magee depicts Milligan as a ‘defective’ knower because of his impairment an understanding that Milligan’s experiences with redness are not exactly like Magee’s own. Yet it is provocative to point out that blind-from-birth individuals do not develop visual processing skills, and then to intimate that they must be epistemologically inferior to, or that their modes of knowing cannot rise to the epistemological significance of, sighted people. Foucault tellingly points out that there are many forms of subjugated knowledges, which are unearthed by lineage, those that represent the individual voices silenced by hegemony. He says: a whole set of knowledges that have been disqualified as inadequate to their task or insufficiently elaborated: naïve knowledges, located low down on the hierarchy, beneath the required level of cognition or scientific way. It is through the reappearance of this knowledge, of these local popular knowledges, these disqualified knowledges, that criticism performs its work . . . These are the suppressed voices of ‘the psychiatric patient, the ill person, . . . the delinquent’ etc., which are representative of ‘a popular knowledge . . . a particular, local, regional knowledge, a differential knowledge incapable of unanimity and which owes its force

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only to the harshness with which it is opposed by everything surrounding it (1980: 81–82).

I have understood ignorance through some critical writings of scholars who have spoken about ignorance. Some notable work comes from Charles Mill in his book in 1997 on The Racial Contract for conceptualizing ignorance: [o]n matters related to race, the racial Contract prescribes for its signatories an inverted epistemology, an epistemology of ignorance, a particular pattern of localized and global cognitive dysfunctions (which are psychologically and socially functional), producing the ironic outcome that whites will in general be unable to understand the world they themselves have made (ibid.: 18).

Building on Mills’ premise, my understanding is that the way The Racial Contract excluded many categories of the world’s human beings especially people with disabilities too get excluded from the discourse of the ablest contract. Like For Mills, the epistemology of ignorance is part of a white supremacist state, for me, the division between ability and disability is very clear to the society. Though abled people tend not to understand the world in which disabled live, able people do benefit its cultural hierarchies, ontologies, and economies. even though there is a movement from the metaphor to emancipatory parlance, academia still fails to present an understanding of disability as legitimate knowledge. Ignorance is often an active social construction. Both able and disabled people’s knowledge is shaped by their social location. From positions of normality and consequent dominance, ignorance can take the form of those in the power either repudiating to allow those who are at the margins to know, or of actively erasing knowledge that creates conscious and unconscious anxieties about knowledge that can create vulnerability. Shannon Sullivan and nancy Tuana remind us that, ignorance often is thought of as a gap in knowledge, as an epistemic oversight that easily could be remedied once it has been noticed (2007: 1). It can seem to be an accidental by-product of the limited time and resources that human beings have to investigate and understand their world. while this type of ignorance does exist, it is not the only kind. Sometimes what we do not know is not a mere gap in knowledge, the accidental result of an epistemological oversight. especially in the case of racial oppression, a lack of knowledge or an unlearning of

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something previously known often is actively produced for purposes of domination and exploitation. I cite these scholars not for the sake of subtleties of emphasis in understanding ignorance, but to conceptualize ‘knowing’ and ‘not knowing’. A very clear example of socially constructed ignorance is disability that make able bodied as privileged knower’s who are unconscious to systemic injustices. It is, therefore, not surprising then that the difficulties of disabled people are often termed as ‘differently abled’ and ‘differently challenged’. As per nancy Tuana’s (2006) taxonomy of ignorance, what is really critical is the ignorance produced by the construction of epistemically disadvantaged identities. The fact that disability as knowledge that can be understood by the stakeholders is not considered in the academia. For instance, ‘the devaluation of the non-verbal testimony/testifier in rape trials, is not independent of the overall gendered structure of rape law, which assumes that the testimony of the prosecutrix is irrelevant and that the “facts” could be inferred from other sources, such as her behaviour or medical examination’ (Mandal, 2013: 1). Thus, disability discourse actively rejects the dominant episteme and refuse to seriously anticipate their way of understanding. Such ignorance in so doing is a form of understated violence. Thus, the reality that they attempt to represent is erased and destroyed (Shiva 1993: 12). Another scholar who brings in intentionality is elizabeth Spelman (2007) who emphatically argues that the ignorance at work in instances of systematic racism is not a simple ‘not knowing’, but rather a triumph, and one that must be managed. She questions Baldwin’s assertion that ‘this is the crime of which I accuse my country and my countrymen, and for which neither I nor time nor history will ever forgive them, that they have destroyed and are destroying hundreds of thousands of lives and do not know it and do not want to know it’ (ibid.: 119). Spelman manages ignorance and highlight the notion of willful ignorance. Thus, intentional ignorance is a ruse that we enforce upon ourselves so that we do not recognize the dissonance. She makes us aware of inconsistent beliefs and commitments involved in ignorance. Thus, the ambivalence of being a self is always tied with an act of division. As a disabled person, I find that an attitude of willful ignorance of defenselessness. This underlies the tyrannical denial of the possibility of responsibility in disabled persons manifested in a tendency to take away work from them.

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In this light, it will not be out of context if we were to ask ‘whether the Subaltern (read disabled) can Speak or be taken as academic? Historically the very infamous question was a result of the subaltern studies group, a project led by ranajit Guha. Having borrowed Gramsci’s term “subaltern”, the objective was to locate and reinstate the marginalized by giving them a “voice” or shared locus of agency in postcolonial India. From Spivak “Subalternity” is the name I borrow for the space out of any serious touching with the logic of capitalism or socialism? Please do not confuse it with unorganized labour, women as such, the proletarian, the colonized . . . migrant labour, political refugees etc. nothing useful comes out of this confusion’ (Spivak, 1995: 115). Thus, to Spivak the very definition of the subaltern is entailing ‘stillness’, whereby the cultural space of subalternity is cut off from the lines of mobility producing the class- and gender-differentiated colonial subject. However, the quandary is whether the subaltern has no agency or is fated to silence. Spivak’s argument is that elite or hegemonic discourses are ‘deaf’ to the subaltern, even when s/he does speak or resist (1996: 289). My submission is that knowledge of disability is ignored, forgotten or not considered human enough by the academia. Following Spivak’s argument, rauna kuokkanen concludes that, ‘the academic conditions of intellectual representation — liberal multiculturalism, tolerance, diversity — preclude the recognition and hearing of indigenous epistemes’ (2009: 65). For instance, ignorance is discussed by Maria Lugones’s Pilgrimages/Peregrinajes: Theorizing Coalition against Multiple Oppressions (2003). She focuses on the non-white voices and records the flow from them rather than trying to interrogate the non-white into existing white-created frameworks. rejecting recognized political frameworks as a means of interpretation, she begins in ‘a dark place where [she sees] white/Angla women as “on the other side”, on “the light side”, and where she sees herself as ‘dark but [does] not focus on or dwell inside the darkness, but rather focuses on the other side’ (2003: 12). Thus, if we cease to think of disabled people as victims annihilated and exhausted by systems of subjugation and conceptualize how disabled can resist systems which aim at imprisoning, interrupting, and obliterating disabled, different ways of making sense can emerge. Lugones’s theory has an aim, which would develop an exciting and creative substitute to modern subjectivity. It is this aspect of her work that I think offers a way to expanding visions

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on ignorance of disability. Given these realities, a significant question to my mind is regarding the fate of those who are marked with ‘multiple categories of difference’. Is a Dalit (lower caste) disabled poor woman, first a Dalit, then poor and then a disabled woman? with whom should she seek a political alliance that would profit her the most? This is where identity which is understood in terms of fixed nuances creates the greatest trouble. Perhaps, at this stage, it would be wise to recall a feminist scholar nivedita Menon who points out, we must go much further than saying that ‘women’ mobilize as upper caste/Dalit and so on. rather we need to come to the more complex recognition that under different circumstances, and given different kinds of political mobilization, ‘people’ identify and come together as Dalits, [lower caste] Muslims, working class, or much less often, as ‘women’. This is the difficult political [and in my case academic] face to face-that women coming together as upper caste/Dalit women (2004: 179; italics in original).

Thus, it is critical that we account subjectivity of the disabled that centres on As a critical question, Indian academia has anyway taken too long to understand the epistemology of disability or bring it into the academic structures. However, in the west and some South Asian countries these steps have already been taken. Though some practical solutions, like equal opportunities cells and enabling units, do assist the disabled students in an accessible and friendly environment, theoretical comprehension of disability, however, is missing. Moreover, even the persons in charge of either disbursing or designing of services for the target population, do it through a well-veiled sense of charity/sympathy. Though there is a change in re-structuring curriculums and many disciplinary courses in central and state universities of India, the Indian academia has not engaged with the epistemology of disability. I do understand that this epistemic disenfranchisement is experienced only by the disabled people, but also by other social groups — notably children, caste, tribal, displaced groups with different sexual orientations — who are taken, by their membership in the group, to be in no position to have reliable beliefs about their own lives and therefore deserve no credit (not even a personal postscript) for knowing. Instead of disability being reflected as a typical experience my attempt is to undertake a study of disability with close applications to social, cultural, historical, legal, philosophical, and an humanities perspectives. As a knowledge base, disability can be a social and cultural construct

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and as a phenomenon reflecting and constituting identity formation by incorporating not only the ‘real-lived’ experiences of disabled as well as non-disabled people.

conceptuAlizinG disAbility studies The centrality of disability studies in the quest for creating and enabling theoretical advances, academic morality and transforming disability advocacy cannot be stressed enough. The purpose of making Disability Studies an academic discipline is to create a body of knowledge, which can provide challenges for rethinking and reflecting upon aspects of our comprehension of disability. As mentioned earlier, Disability Studies like women’s Studies has its origins in the civil rights movements. There are many scholars who have sketched the history of the disability movement. Scholars have done notable work in disability studies from the Uk, the USA and Australia. Though this corpus on disability studies might have come from the developed countries, advocacy was the key in introducing knowledge production. It is important to state that advocacy/activism on disability is critical in creating an enabling environment for the study of disability. There are many scholars who have sketched the history of the disability movement. notable work in Disability Studies has been done by oliver(1996), Finkelstein (1996), Barton (1991; 2005), Snyder and Mitchell (2006), Gabel and Danforth (2008), Shakespeare (2006), Carol Thomas (2007), rosemary Garland Thomson (2002), Meekosha (2009), Campbell, and Goodley (2011). However, this corpus has primarily come from the developed countries. It is important to state that activism on disability is the key to creating an enabling environment for the study of disability. As Goodley (2011: 4) says, ‘what is important to keep in mind is the breadth of disability activism that continues to influence debates within disability studies. The slogan, which guided activism ‘nothing about us, without us’ (Charlton, 1998) should ask germane questions about disability studies. Thus disability is an understanding of theory about knowledge, about who can know what and under what circumstances. This is critical as disabled people are often seen as ‘objects of knowledge’ rather than knowledge producers in their own neither right nor are they seen as capable experts who have the capacity to produce and interpret knowledge from their own particular standpoint. It is such asymmetrical power imbalance in the

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production of knowledge that reinforces the image of the disabled as the ‘other’ in India, ignorance of disability is not limited to disability studies as a major discourse. It is a much more fundamental concern questioning the foundations of the academy which silences the voices of the ‘vulnerable’. Shefali Moitra, a feminist philosopher, reminds us that, There is a fear that the admission of heterogeneity in epistemology will lead to anarchy as well to a communication breakdown. This is a common bogey raised by the main stream disciplines. The point to be remembered is that pluralism is not synonymous with anarchy (2002: 137).

In other words, understanding ignorance is an echo of a structural and systemic problem which ‘are endemic to the social, economic, and political order, deeply embedded in all of its self-reproducing institutions’ which the academy is part of (McIntyre, 2000: 160). Issues of the disability community are not considered as important as other social inequalities in developing countries. Thus the disabled constantly live a marginalized existence. Despite this ground reality, in the last five years or so there have been scholars in my university who have attempted to look at disability from an academic lens. Very few disability studies programmes have been initiated. All the same when plural voices of the disability community and academic scholars speak together, we can hope to create guiding posts to formulate the content and methodology of disability studies. Such an approach would be interdisciplinary in more ways than one. This is not to say that I wish to create a new kind of hierarchy, as it is not important that only the disabled know the reality. rather, the idea is that there would be many non-disabled scholars who take a greater interest in framing of disability as an epistemology. Such a consciousness can also pursue to unmask and deconstruct the dominance and power of the ‘perfect’ able-body by directing on the way that disability is fashioned by society. Thus, the societal assumption is that the disabled are incapable of mutuality, and consequently fail to interrogate societal barriers, able-bodied standards, and prejudice as the causes of disenfranchisement of disability. The challenge of leaving the comfort zone of our original epistemology formed under the taken-for-granted dominant academic discourse therefore is always perplexing. It is even more disquieting to turn our own beliefs upside down and critically analyze

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the assumptions behind these beliefs. what is significant to perceive is that as soon as we become alert to confront the anxiety of stereotypical beliefs, we create an unconscious so that we tend not to venture into such anxieties? when both non-disabled and disabled can go through a creative understanding of disability, that is, a journey of self-examination, then we can reframe the disability perspective. It is clear that disabled people do understand that perfection is a myth People with disabilities therefore would not conceal from others and themselves that they are disabled. According to Siebers: embodiment seen complexly understands 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 (2008: 291).

In my opinion, instead of concentrating on the question of disability in the academy, the need is to question the academy responsible for its ignorance. It is critical to cross-examine the academia so that it can create spaces for people with disabilities. The academy must move away from ‘tokenism’ in which a real willingness to engage in the persevering work about disability as an epistemology. This demands that the academy is open and prepared to stretch into a ‘learning to learn’ mode of understanding and observing the disabled’s world view. Disability is not the only issue for academia as; higher education at large has delimited intellectual inquiry and pursuit of knowledge. I believe such an approach will open disability as an exciting and valuable site of analysis for the social sciences and humanities, redeeming it from its traditional rehabilitation and social approaches. Introducing disability as a counterpoint to the medicalized perspectives on disability springing from the applied fields and in response to the marginalization and deceptions across the notion of disability may seem like a daunting journey for many intellectual researchers and scholars grounding their knowledge in the positivist paradigm. Disability Studies is understood by scholars who find that mainstream academia has excluded the disability perspective. However, mainstream scholars have been reluctant to the new voices. Perhaps, because academia’s issues are rarely resolved, there is little room for new posers such as disability. or perhaps the able bodied academia

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resists the notion that it has not always spoken for all people — Dalit (low caste), tribal or the disabled. This dogmatism is found not only in the traditional understanding of my university but in all universities. This exclusion therefore has to be interrogated. My experiential reality of disability affirms the need to reformulate our epistemic understanding of disciplines and knowledge production, so as to learn from hitherto invisibilized experiences. In a conversation with a young student, Pooja Bakshi, who said that: we have seen with the women’s movement and caste movement in the Indian context, we seem to hit deadlocks and begin to get fragmented/ unable to identify and develop collective agendas. Historically, most of the progressive changes which have come about politically and socially have been rendered possible only on account of collective action which for some strange reasons we have not been able to re-construct post the 1970s and 1980s. Perhaps creating academic spaces for theorizing on lived realities is one crucial step amongst the many strategies which we need to constantly work on (pers. comm.).

Though the disabled people can establish the authenticity of their victimization, a danger vested in such identity politics is that both difference and identity are often organized into hierarchies. As Parmar states, such politics have ‘given rise to a self-righteous assertion that if one inhabits a certain identity, this gives one the legitimate and moral right to guilt-trip others into particular ways of behaving’ (1990: 107). Struggling for issues of disability is important in putting up a fight for inclusion in academia. I find such a fragmentation of identities in academic scenario as troubling, as hierarchies are vicious, discordant and immobilizing. Simply removing add on categories to the new courses are not going to work unless intelligentsia’s ablest attitudes have acknowledged that disability is a part of social and academic psyche. Disability is mentioned in all cultures/texts, ranging from the Indian epic ramayana to the Greek myth of oedipus and the more recent Human Genome Project. It is a narrative about human differences that we can chart over time. If we can excavate, a fiction about bodily variation can be revealed. Critically, these narratives shape the material world, inform human relations, and mould our sense of who we are. In short, then, disability studies interrogate humanity as it challenges our collective stories about humaneness, redefining it as an integral part of all human experience and history. The lens

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of disability, therefore, can enrich the knowledge of body, inequity, identity, literary theory, art poetry, music, literature, and sexuality through an understanding disability studies. The study of disability infuses into the academy a perspective of those who are routinely made invisible and marginalized, just as woman studies and caste studies did before it for other groups. when the issue is gender, men are always acknowledged as the norm and women are considered the deviation. when the issue is disability, the able bodied, seeing, hearing, mentally healthy person with a certain score on an intelligence test is treated but never acknowledged and understood as the norm, while people who communicate through sign language, use wheelchairs, or speak, think, or hear differently, are considered the deviation. The understanding of disability as knowledge helps us to understand insinuations of these preferences. Disability as knowledge not only adds to existing disciplines but also creates new scholarship by posing questions about the place of diverse human realities in society that conventional disciplines have ignored. Understanding the epistemology of disability as a social, cultural and political phenomenon externalizes the issue and helps counter the notion of disability as an inherent, immutable trait located in the person. The study of disability considers the socio-cultural dynamics that occur in interactions between society and people with disabilities. Such an understanding rejects the view that disability is solely a medical problem or a personal tragedy. Instead, Disability Studies places the responsibility for re-examining and repositioning the place of disability within society not on the individual, but on academia as well as society itself. Disability Studies will confront the way in which disability is constructed in academic society. The university will involve the development of the theoretical, research, educational, and advocacy models necessary to remove the legal, physical, policy, and attitudinal barriers that exclude people with disabilities from society. Disability Studies, therefore, has the potential to benefit people with disabilities as well as society by the participation and presence of people with disabilities in our schools, our neighborhoods, our workplaces, and in our lives. Ignorance of disability from the mainstream academia creates and maintains a status quo where the ‘disabled’ is incorporated with the existing social patterns (as special), while arbitrating the normative

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hegemony. In this sense, the representation of disability is trapped in a metaphorical understanding. Although race and sexism are seen as constructions, disability remains as an out-and-out state, both politically and academically — it is the source of its own oppression. Such a reading suggests that more is at stake than a problematizing discourse of specific categories (Spivak, 1990: 42). For instance, we need to be engaged in ‘the unlearning of one’s own privilege’. So that, not only does one become able to listen to that other constituency, but also one learns to speak in such a way that one will be taken seriously by that other constituency. Also the hope is academia can rewrite the relationship between the margin and the centre. Disability Studies can enable the academia to think critically not only about disability but also about oppressions that affect all historically marginalized groups. Scholarship in the universities have become knowledgeable through gender, race, sexuality, and class analyses, deepening our understanding of different epistemic positions .The inclusion of disability can transform the university — just as did the critique of gender and the presence of women.

is theRe A WAy out? Academic discourse tends to use binaries, for instance, in the section on othering , the separation between the abled and disabled is connected to objective, scientific ways of knowing and thinking about the social world. Yet, many binaries remain hard-hitting. Dissolution of categories dis/(ability) can unconsciously underpin the established binaries as one does not normally attune to things outside of their awareness. Consider, for instance, whether it is possible to explain disability while inferring ability in a way that does not render continuum of disability invisible by merely subsuming it under the label of disability. As I write elsewhere, ‘disability theorists have to demonstrate that a naturalized body is a construction that begs deconstruction, for it is through a thorough deconstruction, that the instability of fixed categories can be challenged. Deconstruction thus dislodges the understanding of identity as fixed and definite. while challenging the fixity, it also attempts to view the significance of context in which that fixity is being advocated’ (2003: 162). while deconstruction can assist in breaking down the binary oppositions, the task does not end there. The idea of TAB, that is, temporarily able-bodied, though intended as an indicator of the

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precariousness of human existence is extremely helpful in destabilizing the binaries of health/ill health, non-disabled/disabled. Thus, the boundaries, which divide us into categories, are tangentially wobbly, such that constant replication is needed to keep them in check. In a similar way, as we perform our gendered/disabled/sexed/impaired identities, we also need to perform what is expected of a healthy body, so that it is not tainted with bodily breakdown. The negation of binary thought opens up the realm of continual negotiation, within which it might be possible to work towards a truly inclusive society. However, we have to be extremely cautious that erasing the binaries is not a not a onetime attempt. It has to be conceptualized as a process so that an analytical stance can be generated. An epistemology of disability has to create the potential to question those norms that fail to fully contain or express their ideal standards. The discipline of Disability Studies will enable the students as well as faculty to think critically not only about disability but also about larger social and cultural justifications for inequality and oppression that affect all historically marginalized groups. The way scholarship in the universities and colleges in India have become knowledgeable through gender, race, sexuality, and class analyses deepening our understanding of cultural texts, so too the academic community can broaden the horizon by including disability as a critical epistemology. As I am in process of leaving my writing to history, the state has failed us in getting a new Disability Bill in concordance with a decision to collate India’s obligations under the UnCrPD, which it ratified without reservations. The Ministry of Social Justice and empowerment set up a committee in 2009, headed by Smt Sudha kaul. As per the stipulations of UnCrPD, the recommendation was to include different people with disabilities (across disabilities) to draft this Bill. The Draft Bill of 2011 was submitted to the Ministry after a wide consolation in different states. The Ministry released a Draft Bill in 2012, which scholars; advocates and activists realized that the draft was not comprehensive and inclusive. As there were anomalies between the 2011 draft and the 2012 bill released on the Ministry’s website, the 2012 bill was sent to the various cabinet ministries and then circulated among states. The cabinet cleared a version of the Bill in December 2013. Thereafter, organizations of persons with disabil-ities, confident that the 2012 draft was intact,

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began protests for the speedy introduction and passage of the bill. However on 22 January 2012, Advocate Santosh kumar rungta released a copy of the bill. This draft changed the bill as there were a number of violations that would deny the recommendations stated in 2012. Many groups debated on the bill and there was no consensus on the ‘non negotiable’. Javed Abidi, founder, Disability rights Group, and the driving force behind the bill, felt that For this first time in this country, people with autism and dyslexia will be able to get a disability certificate. They will be able to get concessions, financial assistance and apply for reservations in jobs. This Bill is about some of the most neglected communities in India. And if it doesn’t pass, there will be a net loss of at least two years. Can persons with disabilities in this country afford that?5

In contrast, Pawan Muntha, a social activist, disagrees: ‘what has this Bill achieved that a few amendments to The Persons with Disabilities Act, 1995 could not have achieved? Did we work for five years for this? This Bill just legitimises discrimination’. Amba Selker analyzed the bill and stated that, A reading of the Bill reveals that there is a complete lack of understanding of the approach of the UnCrPD on the part of the drafting Committee Some of the most crucial provisions of the UnCrPD, which were celebrated in the disability movement — the adoption of the social model of definition of disability in Article 1, the concept of reasonable accommodation under Article 2, the right to full legal capacity under Article 12, the right to independent living under Article 19, the right to accessibility under Article 9, respect for home and the family under Article 23, the right to inclusive education under Article 24, and the right to participation in political and public life, have all been either diluted or outright ignored by the drafting committee of this Bill (2014).6

My own reading was that there was no clear understanding on what people with disabilities wanted from the bill. Also, a serious lacuna was that yet again disability was understood as a rehabilitation category. Consequently, the discourse of Disability Studies was negated. At this juncture, the bill has gone to the select committee of Parliament. It is too early to know the status of the bill. whether a democratic process will function or not is difficult to assess. Though there has been a movement in establishing Disability Studies as

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part of the higher education as a committee submitted its report on 24 June 2014. To me, Disability Studies can enable the academia to think critically not only about disability but also about oppressions that affect all historically marginalized groups. Scholarship in the universities have become knowledgeable through gender, race, sexuality, and class analyses, deepening our understanding of different epistemic positions .The inclusion of Disability Studies can transform the university — just as did the critique of gender and the presence of women. As Bell Hooks (1995) reminds us, achievement of colonialism does not require the assumption of power in someone else’s country. rather, colonialism can be accomplished by dominant and normative hegemonies through social apartheid. The understanding of ignorance should remind us that the apartheid is always subject to constant revision. Perhaps, the greatest challenge is to comprehend that we have consciously or unconsciously oppressed the academia by choosing to stay with a singular discipline. It is only when we create intersections that we attack gaps which places limits on human beings, both disabled and non-disabled. Searching for discursive space in the university and society is an uphill task. whether it is the curriculum or access issues, exclusion of marginalized sections from the academia would lead to unfinished aspirations. Unless we can confront the failure of the privileged and the powerful groups, a fair academic world will not be possible. we need to find answers to more fundamental questions such as the meaning of humanity, at the same time safeguarding against cynicism. while hope might be an accomplished liar, I believe that hope is all we have.

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notes 1. Shakespeare’s play connected richard III’s hunchback to his evil lust. 2. See the discussion on Manthara in Chapter Two in this volume. 3. w. Somerset Maugham’s novel Of Human Bondage (1915) is semiautobiographical novel that follows the childhood, youth and early manhood of Philip Carey, who was born with a clubfoot. 4. On Blindness: Letters between Bryan Magee and Martin Milligan describes the dialogues between sighted philosopher Bryan Magee and

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blind philosopher Martin Milligan. Milligan disputed Magee’s claim that the blind person’s knowledge of reality differs from that of the sighted person due to their experiental knowledge. 5. For more information, see ‘Activists rue the weak links in the Disability rights Bill’ (The Hindu, 2014). Available at http://www.thehindu.com/ news/cities/chennai/activists-rue-weak-links-in-disability-rights-bill/ article5703456.ece (accessed on 4 December 2014). 6. See Amba Salelkar, ‘A Critique of The Draft rights of Persons with Disabilities Bill, 2014. Available at http://kafila.org/2014/02/03/acritqiue-of-the-draft-rights-of-persons-with-disabilities-bill-2014-ambasalelkar/ (accessed on 4 December 2014).

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My Personal Journey

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About the Author Anita Ghai is Associate Professor, Department of Psychology, Jesus and Mary College, University of Delhi. She is a disability rights activist in the areas of education, health, sexuality, and gender. Previously, she was Fellow at the nehru Memorial Museum Library, Teen Murti Bhavan, new Delhi, and also the President of the Indian Association for women’s Studies (2008–11). She has served on the editorial boards of Disability and Society and the Scandinavian Journal of Disability. She has authored two books including (Dis)Embodied Form: Issues of Disabled Women (2003) and The Mentally Handicapped: Prediction of the Work Performance (1997, with Anima Sen).

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Index Abidi, Javed 132, 267, 324 able-bodied xviii, 3, 11, 17, 77, 80, 215, 217–19, 228–30, 234, 235, 263; identity 265; mortality 300; persons 3, 80, 213; norm of 166; society 217, 228, 234, 235, 270, see ablest society able-ism 6, 60, 146, 206, 222 ablest society 137, 161, 236, 293 abortion 168, 169, 171–73, 176, 177, 179, 180, 186, 188, 189, 194, 203, 244; of disabled foetus 171, 172, 177, 183, 188, 194, (see female foeticide); and Down syndrome 174, 176, 187; of female foetuses 75, 169–70, 188; feminists and 169, 244; forced 169, 192; grounds for 175; guilt for 174; as immoral 168, 185; individual choice in 185–91; as intellectual impairment 177; Johri on 31; legal system and 168; legitimization of 171; Mary Jane owen on 168; right to 167, 168, 170; an unwanted foetus 186; a woman’s personal choice 180 abuse 102, 158, 160, 195, 207, 286 Acharaya ramamurti review Committee 116, 117 Addlakha, renu 29, 153, 160 Adler 63 aesthetic theory of disability 238–40, see disability, theory of Agrawal, S. n. 132 AIDS xviii, xix, 26, 72, 115, 117, 123, 198, 217, 262, see HIV Alert, Human Genetics 191 Alexander, C. M. 54 Alexander, John. M. 54 alms giving 53–54, 56, 58, 59, see charity Alur, Mittu 267 amputations 26, 97 Amte, Baba 59

anencephaly 209n4 Appiah, k. Anthony 273 Appleyard, Bryan 180 Argyris, C. 309 arthritis xxi, 26, 76, 173, 223 Arya Samaj 18n3 Asch, Adrienne 141, 186 Asha, Dr 258n1 Ashtavakra 66, 72 Ashvins 39, 40 Askwith, Miss 58 Autism xvii, 90, 91, 113, 125, 324 Babbitt, Susan 41 Bachchan, Amitabh 219 Balban, Sultan 56 Baldwin 314 Bandewar, Sunita 167, 168 Barile, Maria 87 Barnes, Colin 76, 232 Barton, L. 317 beauty 9, 14, 48, 142, 222, 239, 304; notion of 9 Beethoven 72 Bejoian, L. M. 31 Bendelow, G.A. 250 Beresford, P. 23 Berger, Peter 235 Bertaux, Daniel x Bérubé, Michael 179 Bhagavad Gita 4, 27 Bhambani, Meenu 267 Bhanwari Devi 93 Bhatt, U. 29, 32, 51, 56, 97 Bhattacharya, Tanmoy 124 biases 97, 151, 172 Biwako Millennium Framework 113 blind persons xviii, xix, 39, 42, 46–48, 52, 53, 58, 59, 82–84, 177, 266, 270, 305

Index blindness 33, 39–42, 53, 72, 89, 90, 97, 104, 177, 270 Bordo, Susan 150, 151 Brihaspati, law code of 50 Broek, Ten 270 Buckingham, Jane 54 Buehler 46 Burlesque 258n4 Butler, Judith 236–37, 271, 283, 284 Campbell, Fiona A. kumari 317 Campbell, Joseph 18 cancer xxi, 13–16, 223, 281 Central Advisory Board of education (CABe) 50, 121 Centre for Blind women, national Association for the Blind 158 cerebral palsy xvii, 26, 72, 89–91, 113, 125, 156, 161, 194, 263, 267, see autism certification in disability 92–98 Chander, Jagdish 266 Chandrashekar, Mahesh xxiii Chandravanshi, Tarakeshwar 198 charity ix, xvi, xx, 33, 44, 47, 50–60, 72, 107; Bhagvad Gita on 59 Civil Services, discrimination in 164n18 Clare, eli 230, 245 Cochlear Hybrid 207 Cochlear implants 166, 204, 206–8 Cochlear nucleus 5, 207 Collins, Patricia Hill 294 Community-based rehabilitation (CBr) xxiii, 51, 91, 109, 110, 117, 118, 144 compassion 31, 40, 51, 54–60, 224 Confederation of Indian Industries (CII) 135, 138 Corker, M. ix, 149, 205, 206, 221, 263 corporate social responsibility (CSr) 134–35 crippled xix, 39, 41, 42, 44, 52, 58, 140, 142, 218, 269 Cromby, John 292 cross-disability 267 Crow, Liz 153, 238, 240, 277

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cultural: identity 21–26, 34–37, 206, 239; realities 20–21, 23–25, 139 cure xvi, 2–6, 17, 32, 35–37, 40, 52, 108, 187, 205, 225 Dalal, A. k. 27, 28, 32, 36, 38, 51, 55, 56, 104, 109, 233 Dalits 75, 223, 261, 273, 276, 279, 296, 316, 320 Dargah Syed Meeran Hussaini Quadri Bogdad 37, see erwadi dargah Darnovsky, Marcy 189 Dart, Justin 266 Davis, L. 142, 241, 275, 303, 306 De Beauvoir, Simone 253 deafness xix, 41, 42, 46, 47, 49, 58, 72, 82, 83, 115, 135, 182, 205–7 Death with Dignity Act(1997) 197, see mercy killing Decade of Disabled Persons (1983–92), The 266 definitional riddles 74–81 dehumanizing treatment 78 deities 4, 26, 36, 38 demons 36, 65, 66 Denzin, n. 222 despair 12, 18, 138 destitute 48, 54–56, 59 desexualization and disability 65, see sexuality developmental disabilities 159, 170, 178, 263 Dewey 310, 311 diabetes 26, 173, 223 diagnostic systems x, 78 (Dis)Embodied Forms viii–ix Disability Act 92–93, 96–97, 112, 122, 129, 137, 267, 303, 324 disability movement 101, 146, 149,152, 166, 167, 238,240, 241, 244, 274, 276–77, 280, 283, 317 Disability right Group 10, 123, 266–67, 274, 277, 288, 324 disability: activism 167, 240, 244, 317; activists xxiii, 62, 85, 103, 109, 121, 123, 153, 174, 193, 194, 243, 244; advocacy groups of 238; categories

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of xviii, 136, 221, 222, 257, 262, 274; certification and 94, 96–97, 324; community of 86, 161, 189, 239, 240, 273, 318; conceptualizing 75, 168, 251, 291; as deficit 61–63; definition of 72–76, 85, 92, 95, 96, 242, 303, 324; as evil 63–65; nullification of 301; ontology of 247–58; as punishment 67–68; research on 16, 24, 82; rights and 153, 168, 194, 254, 255, 286; scholars on 23, 86, 223, 284; selection and 170, 173, 175, 178, 181, 193, 196; studies on viii, xi, 76, 95, 205, 238, 243, 245, 246, 251, 254, 317–25; terminology of 82–85; theory on 2, 220–25, 239, 252, 258, 275, 284, (see aesthetic theory of); types of 26, 113; in Upanishads 41–44; in Vedas 38–41 Disabled Peoples’ International xxi, 267 Disabled rights Group (DrG) 9, 152, 238, 266, 267 disabled: bodies 1, 17, 142, 143, 220, 237, 239, 241, 242, 247, 256–58, 292, 293, 305, 306; children 2–4, 31–33, 111, 113–16, 118–20, 122–24, 126, 127, 150, 170–78, 181, 182, 185, 186; foetus 170–72, 188; identity 15, 125, 213, 227, 247, 257, 263–65, 268, 280, 294, 295; students 112, 118, 122, 316; women viii, xv, 15, 21, 54,131, 139–41, 143–50, 153, 155, 157, 161, 191–92, 195, 196, 275, 280, 281, 296 discrimination xxi, xxiii, 29, 76, 80, 96, 102, 105, 167, 168, 189, 279 Djourno, André 205 Douglas, Mary 242 Down Syndrome 50, 171, 174–79, 181, 186, 187, 226 drama therapy 227 dumb 44–47, 49, 82, 262 duty 51–54 earle, S. 168 education x, 111; about mental illness plays 37; access to 106, 111, 115, 116,

132; of persons with disabilities xxiii; unavailability of xviii education, and disability 111–28 edwards, D. 80, 237 ellison, ralph 215 employment and disabled 128–39, 163n15 epileptic 45, 47 epstein, Julia 282 erwadi dargah in Tamil nadu 37 eugenics 86, 167, 179, 180, 184, 208 eunuch (hijra) 49, 75 euphemism 99n7 european Disability Forum 86 euthanasia 197–201, 203, 204 Everyone Here Spoke Sign Language 24 evil eye 35, see biases; exorcism rituals exclusion xviii, 54, 78, 79, 81, 101, 102, 147, 148, 233, 234, 248, 254, 289, 290, 294–95 exorcism rituals 37 experience of disability 101, 206, 215, 230, 278, 301, 306 eyriès, Charles 205 Fanon, Frantz 288 fate ix, 29–31, 33, 46, 75, 85, 134, 139, 140, 184, 192, 233 female foeticide xx, 31, 75, 169–70, 188 feminism and disability ix, 9, 14, 15, 47, 62, 141–44, 145–50, 166–69, 178, 254, 255, 275, see gender and disability Ferri, Beth A. 305 Finger, Anne 141, 153 Finkelstein, V. 129, 232, 242, 317 folk healing 36, 37, see cure; magic; witchcraft Foucault, Michel 9, 154, 159, 246, 247, 300, 312 Frank, Arthur 15, 290 Fraser, nancy 271, 289 Freire, Paulo (Pedagogy of the Oppressed) 259n8

Index Friedner 139 Fryre, Daniel 270 Gabel, Susan 238, 239, 317 Galton, Francis 179 Gandhi, Mahatma 20 Gautama, Siddhartha 18n6 gender and disability 139–52 Gergen, k. J. 82, 261 Ghai, Anita 153, 170, 176, 306 Ghosh, Jeeja 194 girls with disabilities 150, 160 globalization 87–88, 108, 132, 133 Goffman, erving 24, 213 Goodley, Dan xv, 133, 244, 246, 249, 250, 317 Gottlieb, r.S. 190 Gramsci, Antonio 141 Groce, nora ellen 24 Guha, ranajit 315 Hahn, Harlan 60, 143, 239 Haider, nasiruddin 53 handicapped xvii, xix, 9, 40, 72, 85–86, 112, 113, 310; children 50, 114–16, 174 Haraway, Donna 222 Harrison, Beverly wildung 168 Harry, B. 23 Harstock, nancy 280 Hawking, Stephen w. 72 hearing impairment xvii, 26, 89, 95 heart disease 26, 173 Hervé, Varenne 24 heterosexuality 288; males xviii Heumman, Judy 266 HIV xviii, 98, 158 Hoche, Alfred 254 homosexuality 75, 273, 288, 296 hooks, bell 280, 325 hostility xviii, xx, 176, see discrimination Hudson, wanda 210n21 Hughes, Bill 249, 251, 252, 255, 257 Huilgol, nagraj G. 197, 198 Human Fertilization and embryology Authority 191

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Human Genetics Alert 191 Hume, robert ernest 55 Huq, Mabubul 104 Hurst, rachel 102 identity of disability 286, 296; politics of 261, 262, 264–68, 269–77, 280, 282–83, 286–91, 295–96, 320 ignorance of disability 42, 59, 124, 147, 151, 292, 304, 312–15, 319, 321, 325, see biases immunization facilities 104 impairment, disability and 142, 143, 154, 224, 240–48, 265 inclusive education 50, 112, 116, 118, 121, 122, 125, 127, 324, see education and disability Indian Administrative Service (IAS) 79, 135 individualism ix, 25, 112 insane 4, 46, 48, 49 Integrated education for the Disabled Children (IeDC) 115, 117 intellectually impaired 26, 44, 193, 195, 271 International Classification of Diseases (ICD) 10th revision 86 International Classification of Functioning, Disability and Health (ICF) 86–88 International Classification of Impairments, Disabilities and Handicaps (ICIDH) 85, 87, 88 international financial institutions (IFIs) 133 International Year of Disabled Persons (IYDP) xvi, 266 interpersonal relationships 22, 214 intra-feminist debates 203 invisibility of disability 103, 148, 306 in-vitro fertilization, (IVF) 179, 183 Iyer, Venkat 198 Janak, king 66 Janasruti 55 John, Carvel 153

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Index

Johri, r. 31, 140, 167, 170, 172, 174 Jones, william Sir 46 kakar, Sudhir 36, 191 kane, P. V. 58 kanga, Firdaus 33–35 karma and disability ix, xx, 3, 21, 26–31, 33, 46; Bhatt on 28–29; renu Addlakha on 29; and agency 30–34; and resistance 32–34; theory of 21, 26 kautilya 52 kawash, Samira 214 keller, Helen 72, 276 kevorkian, Jack 201, 203, 211n23 khanna, Shalini 158 khujjuttara 49–50 killing infant girls 32, see female foeticide kleege, Georgina 305 kothari Commission 113, 114, 117, 120 krishna warier, A. G. 44 kristeva, Julia 257 kristiansen, kristjana 246 kruks, Sonia 262, 286 kuhn, T. S. 308 kumar, ravi 279 labels of disability xix, xx, 50, 77–79, 82, 95, 118, 215, 217, 227–28, 233, 262 Lama, Dalai 70n7 Lamb, Sharon 151 Lapper, Alison 142 learning disabilities 115, 281 legal definitions 78, 90, 107 legislations and disability 85–92 Leonard, P. 149 leprosy 26, 39, 48, 53, 89, 98 leprous 33, 53 Light, richard 240 Linton, Simi 214, 267, 303 Lister, ruth 281 Living will 197, 198 locomotor disability 89

Lorde, Audrey ix Luckmann, Thomas 235 Luxemburg, rosa 141, 142 Maart, S. 87 MacIntyre, A. 253 Madan, Vandana 118 magic 34–37, see cure; witchcraft Mahabharata 40, 53, 56, 57, 60–3, 67; disability of Dhritarashtra 62 Mairs, nancy 14, 305 Mäkelä, P. 246 male gaze 141 Malhotra, ravi 129 Malik, kenan 290 malnutrition xxi, 54, 104, 106, 123 Mani, Lal Adwani 266 Manimekhalai 70n12 Manimekhalai 55 Manthara, as mentally unsound 64, 65 Manu 46–49 Manusmriti 46–51 marginalization ix, 29, 67, 73, 83, 101, 102, 112, 125, 221, 265, 276 marginalized groups xvii, 94, 108, 148, 207, 222, 261, 262, 265, 273, 285, 322, 323 Martinez, Francesca 285 Martinez, raoul 285 Masani, Minoo (Society for the right to Die with Dignity [SrDD]) by 197, 209n15 Mason, Micheline 240 masquerade 216–19 Maurya, Chandra Gupta 54 May, Vivian M. 305 McDermott, ray 24 McLaughlin, Janice 167 Mcruer, robert xi medical model: of disability 229–31, 283, 299; theorization xxii medical termination of pregnancy (MTP) 192 medicalization viii, x, 35, 224, 225–31 Meekosha, Helen 79, 317

Index Mehrotra, nilika 29, 54 Mehta, Ved 33, 270 Memmi, Albert 301 Menon, nivedita 147, 148, 153, 167–70, 275, 277, 296, 316 menstrual hygiene 144 Mental Health Act, The (1987)90 mental illness (MI) 31, 35, 37, 53, 74, 89, 90, 96, 97, 273, 274, 281 Mental retardation and Multiple Disabilities Act (1999) xvii, 91 mentally disabled/retarded 26, 89, 96, 113, 200; girls of 280 mercy killing viii, 166, 196–204, see abortion Merleau-Ponty, M. 253 metaphors, role of 302–7 Michalko, rod xi, 213 Milam, L. w. 1 Miles, M. 23, 25, 32, 49–51, 53, 55–56 Mill, Charles 313 Milligan, Martin 312 Minh-ha, Trinh 312 Minow, Martha 274 miracle 3, 4, 17, 35, 277 misfortune 30, 31, 39, 204 Misra, G. 27, 38, 104 Mitchell, David r. 50 Mitchell, w. J. T. 24, 50, 215, 304, 317 Mitra, S. 73, 130 mobility impairments 26, 78, 153, 157, 229, 291 Mohanty, M. 160 Mohapatra 160 Moitra, Shefali 318 moksha 3, 27 Morris, J. 146, 249 motherhood 9, 141, 169, 170, 188, 191–96 Mouffe, Chantal 283 Müller, Friedrich Max 38 multiculturalism 25 Muntha, Pawan 324 Murickan 53

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mythology, disability in 60–67, see Puranas, disability in nair, Janaki 153 nandy, Ashis 260n16 nanotechnology, biotechnology, information technology and cognitive sciences (nBIC) 108 natarajan, Poonam 209n13 national Act on Autism 100n12 national Centre for employment of Disabled People 132 national Centre for Promotion of employment for Disabled People (nCPeDP), study by 163n13, 164n16 national Policy for Persons with Disability 91 national Policy on education 114 national rural employment Guarantee Act (nreGA) 135, 136 national Trust for the welfare of Persons with Autism, Cerebral Palsy, Mental retardation and Multiple Disabilities’ Act xvii, 90, 113, 193 newtonian paradigm 308 nieto, S. 22 nietzsche, Friedrich 151 nietzschean framework 226 nightingale, David 292 niranjana, Seemanthini 143 nisha 152, 153 non-governmental organizations (nGos) xvi, xxiii, 95, 98, 126, 135, 144, 287, see nGo-ization normalization process 9 oliver, Michael 23, 76, 129, 229, 230, 232, 233, 242, 243, 317 oppression 101, 102, 126, 127, 145, 146, 166, 217, 218, 257, 271, 272, 276, 280, 281, 285, 322, 323 otherness 299–302, 318 owen, Mary Jane 168 Padmanabhan, Manjula 169 Pandey, Shruti 194

362

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Index

paralysis 97, 149 paternalism 60, 227, 259n12 Paterson, k. 244, 247–49 Patterson, Annette 172 Pepper, Stephen 303 Persons with Disabilities (equal opportunities, Protection of rights and Full Participation) (PwD) Act xvi, 88, 90, 92, 97, 112, 129 persons with disabilities (PwD) xv, xvi, xxiii, 29, 51, 52, 79, 90–92, 98, 112–13, 135, 136, 266, 323, 324 Peters, Susan xv, 112, 239, 240, 269 Pfeiffer, David 23, 86, 307 Pillai, B. k. 198 pity xv, xx, 7, 18, 29, 51–2, 59, 142, 269, 306, (see compassion); Bhatt on 51; as dominant mode of representing 52; objects of 60 polio 1, 2, 5, 7, 9, 10, 12–15, 17, 95, 104, 153, 178, 220 poverty 28, 87, 101–11, 132, 197, 207, 263 Pratt, Minnie Bruce 151 Preimplantation Genetic Diagnosis (PGD) 179–85, 188 prejudices 80, 134, 151, 154, 176, 194, 195, 218, 223, 236, 292, 294, see biases prenatal selection 54, 166–84, 208; regulation for 184–85, see abortion Price, Janet 92 Project Integrated education for the Disabled (PIeD) 116 public transport xxii, xxiii, 227, 235 public–private partnerships (PPP) 131 Puranas, disability in 44–46 radhakrishnan, S. 43; on karma 30, see karma and disability ramayana 60, 64–66 rapley, M. 249 rapp, rayna 173 rationalization 30, 73, 79, 109, 201, 213 ravi kumar 279

rawat, A. S. 197 reddy, Jai Pal 213, 258n2 rehabilitation Council of India (rCI) xvi, xxviin5, 112 rehabilitation xvi, xviii, xx, xxii, xxiii, 2, 29, 79, 80, 90–91, 112, 225, 227, 230 reincarnation 24, 27, 35, 45 reservation for persons with disabilities 135 retribution xix, xx, 28–30, 47, 65 rhodes, william 112 right to education (rTe) 113, 122– 23 roosevelt, Franklin D. 72 roshan, Hrithik 219 rungta, Santosh kumar 324 russell, Marta xxi, 129, 133 SAMA study 184–86 Samrita Trust 58, 71n14 Sandel, Michael J. 206 Sarva Shiksha Abhiyan (SSA) 118, 119 Saxton, Marsha 187 Schiavo, Terri 210n18 Schizophrenia research Foundation (SCArF) 96 segregation 29, 55, 227, 231, 304 Seidman, Steven 156 Self 36, 45, 128, 299 self-victimization 268 sex selection 31, 168–70, 180, 181, 184, 186, 189, 191; and abortion 167 sexual: abuse 102, 160, 195; desires 143, 155, 156; identity 255; orientation xviii, 75, 78, 80, 219, 220, 223, 239, 251, 310, 316 sexuality xi, xviii, 34, 66, 142, 143, 152–61, 241, 261, 264, 265, 291, 321–33 Shakespeare, Tom 180, 221, 242, 243, 245, 246, 249, 251, 256, 283, 317 Shakuni, as physically impaired 63–65 Shanbaug, Aruna 210n22, see mercy killing Shapiro, Joseph P. 266

Index Sharp, k. 168 Sherry, Mark 80 Shildrick, M. 92, 249, 257, 281 Shuttleworth, russell 152 Siebers, Tobin 216, 219, 220, 224, 236–37, 245, 250, 265, 268, 284, 291–94, 319 sign language 125, 127, 146, 205, 208, 321 Singh, S. 176 sins 4, 24, 38, 45–47, 49, 56, 257 Smriti 46, see Manusmriti Snyder, S. 24, 304, 317 social constructionism of disability 63, 177, 181, 235–8, 243, 245, 271, 290–94 social model of disability xxii, 231–35, 240, 244, 248, 251, 283, 291, 299, 307 social movements xxviin7, xviii, xx, xxi, 101, 153, 261, 276, 283, 294, 296 Sodowsky, G. r. 22 Sohna sulphur water bath 5 sorcery 34–37 Spastics Society of India 267 special education xvi, 50, 79, 115 Special employment exchange in Mumbai 129 special schools 115–19, 123, 124, 221, 267 Spivak, G. C. 282, 315, 322 Sri Mehndipur Balaji Temple 18n5 stable impairments 243 stare 141, 142, 218, 252 stereotyping of disability 192, 306 stigmatization 9, 24, 29, 31, 79, 101, 130, 136, 142, 182, 213 Stiker, Henri-Jacques xxii, 24 Stone, Deborah 78, 96, 97 Structural Adjustment Programs (SAP) 132, 133 study of disability 206, 221, 310, 316, 317, 321 subaltern 315 supernatural powers 36. see miracles

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363

Surpanakha 65, 66 Swarnjayanti Gram Swarozgar Yojana (SGSY) 107 systemic exclusion 101, 311 Szasz, T. 302 temples 4, 36, 41, 279; prayers at 32 temporarily able-bodied (TAB) 229, 322 tensions 96, 136, 224, 240, 245, 257, 282, 285, 290, 296 Thakur, T. S. 132 Thomas, C. A. 200 Thomson, rosemarie Garland x, 149, 317 Tilak, Lokmanya 38 Titchkosky, Tanya x, 84 traditional healers 36 transgressions 10, 161 transmigration 27 Transplantation of Human organs Act 199 Tremain, S. 243, 245–47 Tripathi, k. n. 104 Tuana, nancy 313, 314 Tympana, Sebastian 245 Un Convention on rights of Persons with Disabilities (UnCrPD) 92, 136, 323–24 Un rights of Persons with Disabilities Convention 193 Un world Programme of Action Concerning Disabled Persons 120 understanding disability xxii, 16, 23, 38, 45, 72, 81, 82, 101, 221, 224, 238 UneSCo Salamanca Statement and Framework for Action (1984) 113, 120 Uniform Civil Code (UCC) 148 Union of the Physically Impaired Against Segregation (UPIAS) 84, 231, 232, 240, 242 Universal Declaration of Human rights 111

364

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universal humankind 262 Upanishads 41–43 Varde, Sadanand 200 Vehmas, S. 246 Venkatesh, A. 199 violence xviii, xxi, 102–4, 160; against women xviii, 104 visual impairments 26, 52, 89 vocational rehabilitation 131 vulnerable groups 107, 131 wade, Cheryl Marie 248, 268 watson, James D. 190, 245, 249, 251 wells, H. G. 24 welsch, w. 173 wendell, Susan 220, 235, 237 wholeness 43, 84 widows 55, 59, 279 william, S. J. 250 williams, r. 24

wolbring, Gregor 204, 259–60n16 wolfensohn, James D. 102 women’s movement 145–46, 148, 272, 320 wong, Sophia Isako 181 world Bank 87, 102, 110 world Declaration on education for All 120 world Health organization (wHo) xx, 85 world Summit for Social Development 120 wrongful disablement scheme, of Firoz Shah 58 Yeo, rebecca 106 Young, Iris Marion 215, 304 zakat 56, see alms giving Zola, Irving 213, 229