Disability Studies in India

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During recent decades, the issue of disability has metamorphosed from a purely individual medical clinical problem to a human rights and socio-political issue Consequently, the study of Disability Studies is constantly gaining recognition as a critical area of academic investigation in the universities and academic institutions of Western countries-such as, the USA, the UK Canada and Australia and degrees/diplomas ranging from graduation to post-doctorate levels are offered in 
this discipline But in our country which has the highest population of the disabled in the world. the situation is quite reverse. Notwithstanding plethora of studies and research carried out in developed societies, this is, still a grey and unexplored area This has led to the issue of disability being studied as merely the part of the syllabi of certain specific disciplines and that too, in a rather piecemeal fashion This work seeks to provide a brief recapitulation of the growth of Disability Studies as an academic discipline in the Western universities and thereby exploring the prospects for incorporating the teaching of this emerging discipline in Indian universities and academic institutions
Dr. G.N. Kama, born on 4th February, 1963 in Teghra Village in the district of Madhubani, Bihar was affected by polio at the age of three in infancy which rendered his both legs useless. But with sheer hard work, perseverance and a firm sense of determination instilled in him by his parents, he overcame all barriers of disability Serious handicap did not deter him from pursuing higher studies and achieve excellence in the academia.
A crusader of human rights of the disabled/ disadvantaged. Dr. Kama (who is also the Hony President of Society for Disability and Rehabilitation Studies, New Delhi) is currently Documentation Officer at the HURITER SIS JNU, New Delhi. He is on the Editorial Advisory panel of Disabilities and Impairments (a half yearly international journal of disability issues). He is also the Editor of International Journal of Disability Studies, a quarterly inter-disciplinary journal published under the auspices of the SDRS. New Delhi.
Dedicated to my doctoral supervisor and mentor
Respected Professor K.P. Saksena, whose intellectual
blessings, scholarly guidance and altruistic help
proved to be a beacon-light in my academic sojourn
as also constant struggle against the odds of disability.

CONTENTS

   List of Figures and Tables
   Foreword
   Preface
   Introduction
  1. Understanding Disability
  Rhetoric and Reality; Conceptions and Misconceptions; Terms and        Concepts; Contending Approaches; Medical/ Clinical,                               Psychological, Economic-Vocational, Systems Analysis, Minority          Group, Human Rights and Socio- Political; Summing Up,                            Notes/References.
  2. Disability and Public Policy in Cross-Cultural Perspective
The Myth of Physical Perfection; Public Policy in Cross- Cultural Perspective; Phase of Care and Protection; The Middle Ages; Phase of Education on and Vocational Training; Phase of Social Assimilation; Public Policy in Indian Context; Psycho-Social Determinants; Summing Up: Notes/References.
3. Magnitude of the Problem
Disability: A Global Challenge; Determinants; Strategies and Options; Summing Up; Notes/References.
4. Disability and Human Rights
Human Rights and Globalization; Role of International Organisations; League of Nations; United Nations; Global Norms and Standards; Global Patters Benefit Eligibiliy Criteria
Summing Up; Notes/References.
5. Disability and Citizenship
Disability and the Idea of Citizenship; The Indian Scenario; Comparative Analysis of 1981 and 1991 Sample Surveys; Criteria for Identification; Summing Up; Notes/References
6. Disability Rights Movement: Emergence and Growth
Defining Social Movement; Social Movement and Disability Movement; Typology of Disability Organisations, Implications for India; Summing Up; References.
7. Disability Studies in India: Issues and Challenges 
Evolution of Disability Studies as a Discipline; Survey of Literature; Theorizing Disability; Curriculum Development in Western Universities; Disability Research in India Need for Interdisciplinary Paradigm; Annotated Bibliography; Summing Up; Notes/References.
8. New Directions for Future
    Bibliography
    Index
    List of Figures and Tables

Foreword

Ever since I met Dr. G.N. Karna some two years ago, I have been greatly moved by his grit, determination, talent and good cheer in the face of his grave physical disability. To have educated himself right up to the Ph.D. degree was itself a matter of great credit. However, Dr. Karna was not content with the degrees earned. His creative quest led him to establish Disability Studies as a veritable academic discipline. He has pursued this ambition with relentless energy manifesting itself in the launching of the International Journal of Disability Studies and publishing books and articles on the theme. In the course of my acquaintance with him I also came to realise his impressive abilities as an organiser. The establishment of the Society for Disability and Rehabilitation Studies is an eminent testimony to his organising skills.
His earlier work United Nations and Rights of the Disabled Persons was based upon his doctoral thesis at JNU. His new work, Disability Studies in India: Retrospects and Prospects, takes us to a new but allied territory altogether. While the earlier work was focused on the human rights, this new study is a comprehensive examination of the problem of the disabled in historical, cultural and political perspectives. Dr. Karna has gone into each aspect of the problem in great depth. As a historian, I am particularly impressed by his attempt to trace the history of almost every problem that he has sought to examine, he has traversed a long distance from historical depth to visions for the future. He has looked at the theoretical issues involved, the popular notions of disability, and disability and human rights. He has also examined movements for eradication of discrimination based upon disability through affirmative actions etc. It is the evolving consciousness about social injustice to those born with one or another disability, the social attitudes and absence of affirmative action that has led to some initial steps being taken towards setting the record right. The steps could be as minor as giving access to buildings to the disabled by providing ramps, to major ones such as providing employment at par with others and changing social attitudes through deliberate intervention. Dr. Karna’s new work, which has the strength of not being a sentimental appeal but is based on a thorough and dispassionate research, will go a long way in making us all aware that it is in our indifference to the disabled that social injustice really lies. I wish Dr. Karna the very best in his lifelong personal and intellectual struggle.
Professor Harbans Mukhia Rector
Jawaharlal Nehru University
New Delhi-11006

Preface

When I joined the M.Phil/Ph.D. programme of study in International Organisaton in 1988 at the School of International Studies of the Jawaharlal Nehru University (New Delhi), there was little awareness in Indian universities and academic institutions about the emerging field of Disability Studies as a distinct academic discipline, which had taken deep roots in the Western academia. Scholars and professionals, transcending disciplinary boundaries, had started evincing keen interest in the analyses of laws, regulations and the programmes/schemes affecting the persons with disabilities from inter-disciplinary paradigm. The phenomenon of disability was no longer perceived in terms of personal state of affairs, as the traditional approach (individual-centred) does in confining the study strictly to the individuals so affected, and thereby undermining it as something which concerns the physical and cultural environment within which disabled individuals live.
Thanks to the growing social and political movements of disabled people world-wide during the decade of 1970s, there has been a radical shift in social perception. As a result, disability is now largely viewed as an outcome of the interactions between individuals and environment, rather than as a personal deficit or deficiency. The emerging field of Disability Studies, based on the experiences of the disabled persons, has contributed immensely to understanding disability as also evolving a pedogogy. Thus, the field borrows heavily from the minority group and civil rights perspectives having evolved since 1960s, thereby linking the experience of the disabled and disadvantaged individuals with that of other minorities. Like other disadvantages groups, there is the inequality and discrimination faced by the disabled in their practical lives, which could be traced to public attitudes. As all facets of the environment are fundamentally shaped by public policy, changes in the life condition of the persons with disabilities are a function of such policies.
The evolution of Disability Studies as a separate field of academic discipline reflects the change in the conceptual framework of disability During recent years the increasing pace of globalisation and liberalisation have tremendously influenced the academia. Consequently, academics can no longer pursue their own interests secure in the knowledge that their intellectual activities are intertwined with the nation state or merely contemplate how ideas could be disseminated to the rest of the world. In the newly emerging area of Disability Studies this is quite applicable like in other more established parts of the academic curriculum.
This study was initially carried out as a post-Ph.D. research work at SIS of the JNU during 1997-1998 (during the period when my Ph.D. results were awaited), and subsequently developed further under the auspices of Society for Disability and Rehabilitation Studies (New Delhi). But what is contained in this book is its revised and updated version.
A word about the method. This work is the product of several years of painstaking individual research and contemplation in the old-fashioned sense, rather than the so-called modern sophisticated research mechanism. This study is largely based on analytical approach, and has been undertaken with the help of documents and other official publications of the United Nations and its specialised agencies as also reports issued by Govt. of India from time to time, along with other related materials – such as, books, memoirs, research articles and newspaper clippings.
In course of completion of this write-up, I have been assisted by innumerable people and it is not possible for me to articulate my thankfulness to them all. However, my foremost thanks and indebtedness are due to my doctoral supervisor Professor KP. Saksena (Retd. Professor, SIS, JNU), whose intellectual zeal and integrity not only stimulated me to achieve excellence in academia but also left a lasting imprint on my mind.
I also take the opportunity to express my gratitude to Hon’ble Professor Asis Datta (Vice Chancellor, JNU, New Delhi) for awarding me one-year post-Ph.D. special fellowship, which helped me greatly in delving deep into disability issues. Professor Harbans Mukhia (eminent historian and Rector, JNU) also deserves my heart felt thanks for writing a foreword to this work. My indebtness is also due to Professor T. Bandyopadhyay (University of California, USA), with whom I discussed on certain aspects of disability and rehabilitation policies in a comparative perspective. I would be failing in my moral obligation if I don’t acknowledge the valuable contribution of Hon’ble Shri S.S. Ahluwalia (formerly Union Minister and presently M.P. Rajya Sabha) and Hon’be Dr. Bindeshwar Pathak (Founder, Sulabh Sanitation Movement) in my academic sojourn.
I also owe a debt of gratitude to a galaxy of scholars including Professor Bimal Prasad (India’s ex-Ambassador to Nepal and a retired Professor of SIS, JNU), Professor D.N. Mallik (retired Professor and Head, Department of Political Science, BU, Muzaffarpur), Professor M.S. Varma (Department of Political Science, LNMU, Darbhanga), Dr. R.S. Saini (Sr. Documention Officer at HURITER, SIS/JNU) and Dr. G.N. Jha (SIS/JNU) for going through the manuscript and making necessary corrections. Professor VS. Mani (Director, Documentation Information Centre for Promotion of Human Rights Teaching and Research at SIS, JNU), Dr. Varun Sahni (Chairperson of CIPOD, SIS, JNU), and my doctoral co-supervisor Dr. C.S. R. Murthy also deserve thanks from my innermost for kindling inspiration in me to boldly face the challenges posed by severe disability.
It would be ingratitude on my part, if I fail to mention the assistance rendered by the staffs of the JNU Central Library, British Council Library, Delhi School of Social Work Library, NCERT Library and Nehru Memorial Museum Library, New Delhi. I also wish to express my sincere thanks to my family members as also colleagues, friends and well-wishers who helped me in all possible ways. My nephews (Deepak, Raman and Ajay) and niece (Nootan) also deserve thanks for helping me in proof-reading and other physical activities associated with the preparation of the manuscript. The proprietor of Gyan Publishing House deserves thanks and appreciation for carrying out the publication of this work at a very short notice.
Lastly but not less importantly, I cannot but acknowledge the constant co-operation and encouragement of my wife Sandhya and son Anurag, who endured all hardships while I was engaged in preparing this work.
JNU, New Delhi
G.N. Karna

Introduction

The phenomenon of disability has agitated the mindsets of the people since the dawn of civilisation. Public policy has, over the years, moved from providing institutional arrangerment for elementary care to facilities for education (including technical and vocational) for the children with disabilities and rehabilitation programmes for disabled adults. Especially since the decade of 1970s, the growing social and political movements of disabled persons world-wide have tremendously influenced the study and analysis of disability and rehabilitation policies. There has, thus, been a radical shift in social attitude and the issue of disability has metamorphosed from a purely individual-centred medical/ clinical problem to a human rights and socio-political issue.
Defining disability is by no means an easy task. Many definitions have been advanced, founded on diverse values and theoretical underpinnings (Hahn, 1988, pp 39-47; Karna, 1999a, pp. 52-65; Brown, 1997, Michailakis, 1997, pp. 17-30). Traditionally, disability has been examined from medical clinical approach that focuses on functional impairments; or from psychological approach with its orientation on psychological disturbances; or from economic-vocational standpoint that stresses vocational limitations arising out of physical, mental or sensory impairments; or from systems analysis approach which views the phenomenon of disability in systemic terms; or from minority group perspective which seeks to justify analogies between the disabled and other minorities; or from human rights paradigm which views legal measures as constituting the fundamental framework by which mechanism for equality of opportunity can be ensured.
While the socio-political approach regards disability as a product of interactions between individual and environment, the human rights approach visualises disability as having stemmed primarily from the failure of a structured social environment (to adapt to the needs and aspirations of the disabled individuals) rather than from the inability of disabled persons (to adjust to the norms and expectations of the society). Negative attitudes, limited physical access, restricted access to communication and/or resources, and to the rights and privileges of a social group-are the major barriers which interfere with the disabled individuals to actualize his/her desired roles. Thus, disability is, basically, determined by ‘public policy’. Disability is whatever policy wants and makes it to be. This observation gives credence to the view-point that disability implies a problem or a disadvantageous situation, necessitating compensatory or ameliorative action.
The evolution of Disability Studies as a separate field of academic discipline in the aftermath of the disability rights movement reflects of course, the change in the conceptual framework of disability. Recent decades have seen the issue of disability becoming a hotly contested issue in the political arena, with the development of the disabled people’s movement, and in academic discourses. The study of this emerging field has by now gained currency as a critical area of intellectual investigation in several universities and academic institutions of the Western countries (Karna b, 1999, p. 9, 2000, pp. 20-40) particularly in the USA, the UK, Canada and Australia, where researchers of diverse professions have started evincing keen interest in the analyses of laws, regulations and the programmes affecting persons with disabilities. Briefly stated, the underlying assumption is to approach disability from a holistic and integrated paradigm Without an understanding of policy issues shaping the alternatives available to such disadvantaged persons, individuals opting career in health sciences, helping professions and other occupations are debarred from valuable insights and crucial contexts for their efforts to serve the interests and needs of this under-privileged segment of the population Ironically despite plethora of studies and researches undertaken on multitudinous aspects of disability and rehabilitation policies in the developed societies, the field of Disability Studies remains, still, a grey area in our country-not having been properly unravelled by intellectuals and constantly ignored in the curriculum of universities institutions (ibid). Due attention has not been and academic accorded to examine disability and rehabilitation policies from inter- disciplinary paradigms. This tendency has culminated in the issue of disability being analysed merely as part of the syllabi of certain specific disciplines and that, too, in a rather piece-meal fashion. This has had a devastating effect on the study of disability and its development as a sub-field has eluded so far in several disciplines- such as, Rehabilitation Counselling, Special Education, Occupational/ Physical Therapy, Social Medicine, Nursing Science and Bio-medical Engineering. Other disciplines, in which an important linkage could be established, have also failed abysmally to incorporate the study of this topic within their paradigms–such as, Social Work, Gerontology and Public Health.
Moreover, there are several other areas like Architecture, Law, Business or Public Administration and Urban or Regional Planning, which have recently embarked on modifying their disciplinary orientations in response to specific policy directives. Insofar as the field of social sciences is concerned, the most extensive research on disability has been probably conducted in Psychology, Sociology, Communications and Economics; while significant contribution could also be anticipated from a vast range of academic disciplines-such as, Anthropology, Action Sociology, Political Science, History, Area Studies, Gandhian Studies and different branches of Humanities (including Literature, Philosophy, Religion and Arts). What is most perturbing is that there seems to be far too rigid a compartmentalization of disciplines in the curriculum of Indian universities and academic institutions; which has led to a reduction of cross-flow between various fields of research and is, thus obstructing progress in the specific area of disability and rehabilitation policies One may cite several important reasons for seeking to redress this neglect in the Indian perspective and of all these, two could be especially identified in this context–they are the gargantuan size of the population (which, according to a projection of the United Nations/ WHO, comes around a staggering figure of more than 100 million in a developing country like ours, where larger chunk of the populace, still, reels under the appalling poverty, illiteracy and mal-nutrition) affected by ravages of disability and a massive investment being made in successive Five Year Plans for welfare and rehabilitation of such disadvantaged sectors of the society has also failed to deliver the desired results.
Thanks to the global concern, particularly in the wake of disability movement, a new orientation has stepped in the direction of disability and rehabilitation policies. As a signatory to the UN human rights instruments, the Government of India has also taken several measures ranging from physical to vocational rehabilitation of disadvantaged citizens. The enactment of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995 marks a landmark in the history of disability rights movement in our country. The Act provides for both preventive and promotional aspects of rehabilitation-such as, education, employment and vocational training, reservation, research and manpower development, creation of barrier-free environment, rehabilitation for persons with disabilities, unemployment allowance for the disabled, special insurance scheme for the disabled employees and establishment of homes for persons with severe disabilities. Despite all these measures, the social status of the disabled, still, leaves much to be desired. Rehabilitation services are woefully inadequate for the burgeoning population of the persons with disabilities. The disparity between requirement and the availability of services is primarily caused by appalling poverty and deeply ingrained social stigma. In addition, neglect in the immunization campaign, manpower problem, problems concerning rehabilitation technology, lack of political and administrative will power and commitment, lack of sensitization among the intelligentsia and media as also lack of well-conceived terminology are other major hindrances in the mainstreaming of the disabled people.
In order to fill this gap and create mass awareness, particularly at the intellectual level, what is urgently required is to introduce the teaching and research of Disability Studies as an academic discipline from inter-disciplinary paradigm in Indian universities/or academic institutions. This could go a long way in transforming the public perception about disability-related issues. Since, the disabled constitute ten per cent of the total population in our country, It is all the more imperative that like Women’s Studies, Muslims Studies, Nehru Studies and plethora of academic disciplines including Area Studies, which are the thrust areas of higher education and research, this emerging field of knowledge must attract the attention of the academicians and social activists as also policy makers at the Ministry of HRD, UGC and central universities recognise this emerging area as a distinct academic discipline. Hence, this modest attempt is made to explore the prospects for incorporating the teaching of Disability Studies as a separate academic discipline in the Indian context, like in several Western universities.
While applying this perspective in the specific context of India, certain pertinent questions arise. Why is disability individualized and medicalized within contemporary consumerism societies? How have the disabled people been viewed in the past? What are the socio- cultural factors leading to the marginalisaion of the disabled throughout history? What is the magnitude of the problem of disability in developed and developing societies? What interventionist measures have been taken at the global level for the promotion and protection of human rights of the persons with disabilities, and with what results? How do the disabled share the citizenship rights with others in the society? How has the disability rights movements influenced the policy formulations in India and abroad? How has the field of Disability Studies developed as a separate academic discipline in Western Societies and what implications does it have for the Third World societies like India? What are the prospects and challenges ahead Deability in introducing the teaching and research of this area in the universities and academic institutions of our country and how can those hurdles be removed? These and other related questions are the focus of this study, which is divided into eight chapters
The first chapter examines the conceptual framework of disability from different paradigms. Following the conceptual framework. evolved by the World Health Oganisation (hereafter WHO) as the basis, it seeks not only to scientifically demarcate between impairment disability and handicap but also to evolve the human rights and socio- political approaches for understanding the problem of disability in its entirety.
In the second chapter, an attempt is made to provide an overview of disability and social policy in historical and cross-cultural perspectives. While doing so, it chronicles the social perception towards the persons with disabilities, in general as also in the specific context of India, with certain discernible trends.
The third chapter seeks to comparatively examine the magnitude of the problem of disability in developed vis-à-vis developing societies
The fourth chapter is focussed on disability and human rights and examines the UN human rights instruments as also international interventionist measures for the promotion and protection of human rights, with specific reference to the rights of the disabled persons.
The fifth chapter is intended to analyse the extent to which persons with disabilities share ‘citizenship rights’ with the rest of the society. To this end, it attempts to identify certain difficulties underlying the definition of disability as also to outline its implications for policy formulations.
The evolution and proliferation of the disability rights movement at the global level has been critically examined as a social movement in the sixth chapter and then it provides an overview of the evolution of the disability rights movement in the Indian instance
The seventh chapter presents a synoptic account of the evolution of Disability Studies as a distinct field of academic inquiry in the curriculum of the universities and academic institutions of the Western countries. In doing so, it outlines the significance of inter-disciplinary paradigm for disability research in India.
The concluding chapter makes a forceful advocacy for introducing the teaching and research of this emerging area as a distinct academic discipline in the universities and academic institutions of our country so as to provide a firm footing for national policy formulations.
References
Brown, R.I. (Ed.) (1997) Quality of Life for People with Disabilities: Models, Research and Practice (Cheltenham: Stanley Thornes Publishers Ltd.), 2nd edn.
Hahn, Harlan (1988) The politics of physical differences: disability and discrimination, Journal of Social Issues, 44(1), pp. 39-47.
Kama, G.N. (1999a) United Nations and the Rights of Disabled Persons: A Study in Indian Perspective (New Delhi: APH).
(1999b) Disabled perspective, The Pioneer, December 8.
(2000) Disability Studies in India: issues and challenges, International Journal of Disability Studies, 1(1), Oct.-Dec. pp. 20-40.
Michailakis, Dimitris (1997) When opportunity is the thing to be equalised, Disability and Society, 12(1), pp. 17-30.
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