Chapter 1 Introductio1 in India Interrogating Disability Nandini Ghosh Abstract The academic discipline of disability studies resulted in the establish ment of a new paradigm, with Westen scholars problematizing disability as dis- crimination rooted in personal, interpersonal and institutional processes. of ‘exclusion and oppression, which is endemic to any society. Theoretical approaches, to disability have engaged in critically unpacking structures of categorical exclusion in the form of ableism, normalcy and construction of disabled people as the other. ‘Thus, interdisciplinary disability studies continuously attempts to unravel different ways in which disability is conceptualized and its impact on the daily lived experiences of disabled people at the community level. The introduction to this volume endeavours to lay out the debates around disability and the ways in which disability studies as an academic discipline have addressed the concerns of disabled people. Further the chapter tres to weave together the papers in this volume by ‘examining the relevance of the Western perspectives on disability in contextual izing the concept of disability from the vantage point of social, cultural, political and legal discourses in India that have an impact on the way in which disability is defined, interpreted and experienced. Keywords Disability studies » Defining disability - Quality of life ~ Disability policy Disability studies emerged as an academic discipline in the Westem countries in the 1960s and 1970s mainly through the efforts of disabled people and their organi- zations whose voices emerged in the 1960s (Roulstone et al,, 2012). This new field of study was multidiseiplinary and resulted in the establishment of a new paradigm around disability, sifting the focus from a personal medical problem to a social and political one, where social discrimination and prejudice dominated. The disability N. Ghosh (@) Instiute of Development Studies Kolkata, Kolkata, West Bengal, India ‘email: nandinighosh gmail.com © Springer India 2016 1 IN. Ghosh (ed), Intrrogating Disability in Inia, Dynamics of Asian Development, DOL 10,1007)978-81-322-359S-8 12 IN. Ghosh rights movement that emerged in the 1960s provided an impetus to highlight issues that were relevant to persons with disabilities, asa challenge to the gatekeeping role of medical and rehabilitation professionals who had the power to decide the interventions required for disabled people and who qualified for benefits (Snyder, 2006). The demand for civil rights for disabled people emerged mainly out of the ‘engagement of disabled scholars with the issue of disability and the ways in which it may be interrogated advocated for a change in the way in which disability was understood. With the broadening of the field of disability, there emerged many strands of theories that problematized disability as diserimination rooted in per- sonal, interpersonal and institutional processes of exclusion and oppression, which are endemie to any society, The broad array of theoretical approaches to disability forwarded by activist scholars has engaged in critically unpacking structures of ‘categorical exclusion in the form of ableism, normaley and construction of disabled people as the other. These approaches include the strict social model, the minority group model (where persons with disabilities ane a distinct oppressed minority), disability as culture (where particular groups especially the deaf constitute a discrete ‘culture and possess unique cultural heritage) and the idea that disability is diversity such as gender, race, ethnicity. Thus, interdisciplinary disability studies ask the following questions—(a) How is disability best defined or conceptualized? (b) What impact does disability have on persons with disabilities in terms of quality of life? (c) How we ought to respond to disability at individual and social level? ‘The articles in this volume reflect a multidisciplinary approach to the issue of disability and lives of disabled people. The contributors come from varied back- grounds across the social sciences and humanities, from sociology to political science, social work, economics, to English and linguistics. Almost all disability studies scholars emphasize the need fo contextualize the concept of disability within particular social cultural contexts, recognizing the Fact that different social, cultural, political and legal discourses have a differential impact on the way in which dis- ability is defined, interpreted and experienced, 1.1 Defining Disability One of the major barriers tothe analysis of disability stems from the confusion over the nature or meaning of disability. The term disability has become a contentious cone, mainly due to the fact that different conditions, physical, mental, psycho-social and sensory impairments are considered disabilities. Historically, “disability” has been used either as a synonym for “inability” or as a reference to legally imposed limitations on rights and powers. It is only in the past century that the term “dis- ability” has been used to refer to a distinct class of people. Theories of disability have problematized the concept of disability differently based on their philosophical and disciplinary stances, ranging from moralreligious definitions to more dominant1 Imzoducton:Interrogating Disability in India 3 modicalized explanations to radical sociopolitical negotiations in the last few decades. All these definitions have had a significant impact on the state's formu lation of the concept of disability and its resultant impact on policies and pro grammes tries to blend these approaches together, leading to different sets of solutions to issues raised by disabled people and the most effective means of allocating resources. Perhaps the strongest claim to the definition of disability in present days is made by the field of medicine, which emphasizes limitation in functioning. With the spurt of development of the medical sciences in the early nineteenth century and the initial focus on disability acquired as a result of the world wars, the concept of Aisabitity came to be defined as a deficit or lack in terms of human functioning, which privileges a notion of the normal. The definitions of disability came to include a range of physical, sensory and mental conditions labelled as abnormal ot disabling. Disability, thus, became a negative variation from the physical norm that impaired the functional capacities of the physically disabled person (Shakespeare, 1996). The medical approach raises the question of normality, both in the sense of performing and conforming to a certain standard from which disabled people deviate. Medical interventions aim at restoring the disabled person to normality, as reduction of the ability to perform in the “normal” modes and at “normal” levels needs to be remedied. There is a power play between the doctor and the disabled person or the patient, who is ascribed a clinical label and sought to be normalized through preventive or curative medical technology. Such clinical definitions of disability also become administrative tags for controlling disabled people's access to financial and other assistance as well as attaching a stigma to the labelled person by suggesting a physical imperfection or deviance from the norm. Defining disability and providing facilities for the disabled people are the main supports ofthe medical model of disability, which aggravates the dependence of the disabled person on the “professional” caregivers. Thus, in most disability and rehabilitation programmes, a medical determination usually is an essential prereq- Lisite for participation. The medical model completely ignores the crucial role of obstructive environments in creating dysfunctionality by treating the built and arranged environment as an invariable and hence disabled persons must adapt and adjust to their surroundings. Thete is a denial of common social experiences, which unite disabled people and the focus is only on the medical dimensions of difference (Shakespeare, 1996). The prevalence of a medical approach to disability may be one aspect of what Illich (1976) has termed “the medicalization of life”. A medical definition not only imposes a presumption of biological or physiological inferiority upon disabled persons, but it also inhibits recognition of the social and structural sources of disability. From this perspective, the problems of disability arise from physical flaws within a person rather than from an unadaptive environment or society, and solutions to these difficulties must be sought primarily through indi- vidual rather than collective efforts. The medical perspective implies a demand that disabled persons must adapt and adjust to their surroundings without imposing a corresponding obligation on policy-makers to create an environment which can accommodate the needs and desires of citizens with disabilities4 IN. Ghosh ‘The medical model was subjected to criticism by disabled people themselves because of its biologically deterministic stress on physical or sensory deficits and ignoring the lived experiences of disabled people. The application of a clinical label obscures the ubiquity of physical disability, ie. the experience of stigma, exclusion, discrimination and dependency—all of which deprive people with disabilities from having control over their lives (Lonsdale, 1990; Marks 1999). There is a denial of ‘common social experiences, which unite disabled people and the focus is only on the medical dimensions of difference (Shakespeare, 1996). Disabled people have been critical of the normalizing medical programmes that aim to refashion bodies of individuals to conform to “naturally” desirable standards, Normalizing programmes imposed to force anomalous individuals to adjust to environments suited to dorn- inant social classes totaly ignore the role of obstructive environments in ereating lysfunctionality”. Moreover, as disability is contextual and variable over time and circumstance, any individual can become impaired at any point of time. Impairment is simply a bodily state, characterized by absence or altered physiology, which defines the physicality of people. ‘The social model of disability developed out of the disabled people's movement both in Europe and in the USA in the 1970s and 1980s. The social model recog- nizes that disability is not the outcome of bodily pathology but is socially produced by systematic pattems of exclusion that are built into the social fabric (Shakespeare, 1994; Hughes and Paterson, 1997). One strand of the social constructionist para- ddigm suggests that society creates a negative social identity for people with dis- abilities, which is characterized as deviant or abnormal (Asch and Fine, 1988). The able-bodied community uses prototypical portrayals of disability for legitimizing the social exclusion of the disabled people, The disabled identity exists as mutually ‘exclusive identity from all other identities because the cultural and media discourses ‘on disability are influenced by the personal tragedy principle or by images of the super-cripple or the emotionally stunted disabled stereotypes (Oliver, 1990), Another strand of the social constructionist paradigm posits disability a8 both a socially and historically relative social relation that is conditioned by political ‘economic dynamics (Finkelstein 1980 cited in Oliver, 1990). Altitudes, discourses and symbolic representations are critical to the reproduction of disablement, but are ‘themselves the product of the social practices which society undertakes in order to meet its basic material needs (Oliver, 1996; Gleeson, 1997). The material condi- tions that produce the attitudes and meaning systems about disability have a great influence on the concrete experience of, and attitude towards impairment, which may vary between different modes of production. The social construction of physically impaired people as disabled people arises from the specific ways in which society organizes its basic material activities. ‘The social mode! of disability has served as an effective tool for remedying the Injustices faced by disabled people and relocating efforts of service providers from individual solutions to removal of barriers to participation in the mainstream activities. While the social model recognized the importance of appropriate indi- vidually based interventions in the lives of disabled people, it chose to focus on their limitations in terms of furthering their inclusion and empowerment within a1 Imzoducton:Interrogating Disability in India s society constructed by non-disabled people for non-disabled people (Barnes and Mercer, 2003). The social model was able to bring about structural changes in the developed countries in which it had been developed by insisting on citizenship rights and ant-discrimination legislation. At the same time, the social model argued for a strong minority identity and demanded better services and facilities for the disabled, like higher benefits, more provisions for education and employment and increased access to all public facilities However, even though the social model shifted the focus from the disabled indi- vidual to societal structures, it has failed to take into account subjective and bodily experiences of people with disabilities (Morris 1991; French, 1993; Tregaskis, 2002). This rejection of the lived experience of impairment in favour of the social barters to disability denies the pain of impairment, both physical and psycholog- ical. Thus, the social model perspective is seen as the rejection of impairment as well as the denial of the value of appropriate individually based interventions for rehabilitation, education of livelihood. The social model attempts to shift attention away from functional limitations of individuals to problems causes by disabling environments, barriers and cultures, moving away ftom materialist conceptions of disability. The social model of disability proposes an untenable separation between the body and culture, impairment and disability, and in spite of its critique of the medical model, actually concedes the body to medicine and understands impair ‘ment in terms of medical discourse. The impaired and dysfunctional body is scen as devoid of meaning and history, a fixed, material entity subject to the empirical rules of biological science, existing prior to the mutability and flux of cultural change and diversity and characterized by unchangeable inner necessities (Csoras, 1994; Shakespeare, 1994). As a consequence, the body disappeared from dlsability dis- ‘course (Hughes and Patterson, 1997; Asch, 2001; Shakespeare, 2004), Despite the acceplance and promotion of the social model by disability activists and theorists, the medical model remains very powerful in influencing the inter- national definitions of disability. The influence of medical ideas on disability is also reflected international documents like the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1991) which views disabilicy in terms of physical, intellectual or sensory impairment, medical condi- tions of mental illness, which may be permanent or transitory in nature. The World Health Organization (WHO) developed the International Classification of Functioning, Disability and Health (2001) refers to disability as an umbrella term for impairments, activity limitations and participation restrictions. The concept of impairment retains a focus on biological systems, thus reiterating a supposed bio logical norm as the standard against which individuals are judged to be impaired. Participation and restrictions are defined in terms of the individual rather than in ‘more social structural or even environmental terms, On the other hand, the United Nations Convention on the Rights of Persons with Disabilities 2007 spells out clearly and unconditionally that states have a positive and prominent role in promoting, protecting and ensuring the full and equal enjoyment of all human rights and fundamental freedoms by all persons. with disabilities, and to promote respect for theit inherent dignity. Persons with6 IN. Ghosh disabilities include those who have long-term physical, mental, intellectual or sensory impairments, which in interaction with various barriers may hinder their {ull and effective participation in society on an equal basis with others. Based on the premise that all human beings have inherent dignity, which entails the enjoyment of all human rights, persons with disabilities are unconditional (human) rights-holders. Subsequently the focus is not on the possible impairment(s) but rather on the ‘constraints that the social fabric builds into accessing the enjoyment of rights. In addition to the more obvious physical barriers, this approach focuses on the ‘manifold social, behavioural, steeotype-based barriers that lead to and potentially sustain the exclusion of persons with disabilities, ‘Thus, defining disability remains tenuous and tentative at best, us both practi- tioners and disability scholars debate the ways in which disability and impairment may best be understood and thus addressed. While the (medical) condition ot impairment remains the basis on which is constructed an entire range of social interpretations regarding the impairment, there is an increasing focus on the context, and how the contextual sociocultural, religious and linguistic influences construct a person with impairmenvdisability. The alternate social model that is proposed needs to incorporate aspects of medical interventions that impact the life of a person ‘with disability in terms ofthe effect it has on the experience of impairment within a particular context, These contextual forces interact to give rise to varying degrees and types of deprivations and social disabilities that influence the daily lives of disabled persons. Disability can thus be conceived as being embedded in a par- ticular social context and must then be interpreted in terms of oppression, keeping in mind other identity markers such as caste, class, gender, sexuality, religion, cthnicity, ete. There needs to emerge a focus on exclusionary societies and its impact on persons with disabilities in pluralistic societies in which we increasingly find ourselves. Chapters 2, 3, 4 attempt to illuminate theoretical discourses within disability and ‘endeavour to contextualize itin an Indian context. Shilpa Anand draws attention to the ways in which disability studies in India has adopted the models approach to disability in academic research, which has in turn provided suggestions to improve services like rehabilitation, education, policy-making and law. However, such a stance has exposed the limitations of the disability studies models approach and indicates the need to develop theoretical and methodological tools that are ccontext-sensitive, asthe idea of the individual is conceptualized very differently in different contexts. Tanmoy Bhattacharya points out that the difference between inclusion as the notion that everybody is the same regardless of race, gender, disability or sexual orientation, and recognition, which demands a change in the basic norms by which a society is governed actually determines the way in which disabled people are viewed by society and the state at large. He argues that inclusion of disabled people in education and employment has remained token gesture and advocates for recognition of difference and protection of cultural diversity in order to ensure preservation of rights of disabled persons. The legal discourses on disability individualize definitions veiling the concerns of solidarity \ithin the community. Rukmini Sen's paper highlights the way in which the Rights1 Imzoducton:Interrogating Disability in India 7 of Persons with Disabilities Bill 2012 addresses the gender question in the light of few contemporary incidents of harassment/violence on persons with disability in their everyday lives. 1.2, State Policies, Disability Discourse and Quality of Life of Disabled People in India In India, the atitude of the state has always been one of charity and welfare. From the colonial period, schools and residential institutions mainly for visually and orthopaedically impaired people were started mainly in towns with religious shrines (like Benares and Lucknow), where there was a preponderance of disabled people, living off the charity of visiting pilgrims. After Independence, the Constitution of India guaranteed through the Directive Principles of State Policy and Fundamental Rights, equality before the law and equal protection of law forall its citizens, and prohibited discrimination on the grounds of “religion, race, caste, sex, place of birth”, The state in India accepted social welfare as a responsibility, seeking to promote the welfare of the weaker sections of society, defined as groups of indi- viduals in need of special considerations like children, women, people from certain scheduled castes and tibes and disabled people (Billimoria, 1985), However, people with disabilities were considered to be different, as is evident from Article 41 which stipulates, “The state shall, within the limits of its economic capacity and development make effective provision for securing the right to work, to education and to public assistance in cases of unemployment, old age, sickness and dis- ablement” (Advani, 1997) ‘The reluctance of the government in formulating and implementing a coherent disability policy reflects the sociocultural assumptions about the disabled in India, where a religio-moral-medical model of disability is still prevailing. While the ‘welfare approach towards other disadvantaged sections of the population such as women, children and the Scheduled Castes/Tribes led to comprehensive state-initiated policies and programmes, the attitude towards disabled people was of token inclusion and general neglect and apathy for their concers. The Planning Commission, entrusted with the responsibility for allocating funds and planning programmes for different sections of the populace, sought to define during the first Plan period (1951-1956) the physically disabled as those lacking in one or more physical senses like blindness, deafness, those suffering from movement dficulies, mainly orthopaedic, and lepers and epileptics (Mehta, 1983). This definition of disability, with its strong medical bias, has since then influenced the state's attitude and orientation towards disabled people and their concerns, The allocation of funds for the disabled during the first few plan periods followed an arbitrary and skewed pattern, with the medical rehabilitation of the disabled receiving top priority, as the state had by then, adopted the medical model of disability as the key paradigm for service delivery. A large part of the financial allocation for welfare and5 IN. Ghosh ‘ehabilitaion of disabled people was channelized into providing facilities for medical treatment and management of people with different orthopaedic and sen sory disabilities, such as restorative surgery, provision for assistive aids and appliances and different therapeutic interventions (Mohit and Rungta, 2000). The major responsibility for providing medical and support services to the disabled still remains with the local non-governmental organizations (NGOs), who cater mostly to the needs of the disabled in the urban areas But the problems of disabled people were not addressed in a comprehensive manner (Mani, 1988). One of the reasons for this was the lack of adequate data about the persons with disabilities in India. Although the British rulers had initiated the collection of accurate information about disabled people during census opera- tions in India from 1872 to 1931, the collection of statistics on disability in inde- pendent India was first initiated in 1981, as a result of developments in the international arena such as the United Nations General Assembly's Declaration on the Rights of the Disabled Persons in 1975 and the declaration of 1981 as the International Year for Disabled Persons. However, the biased terminology used in the census operations (totaly erippled, totally blind and totally dumb) rendered the data inadequate, as only 0.16 % of the total Indian population was found to be disabled, leaving out two major categories, people with hearing impairments and mental disabilities. The category of disability was dropped from the 1991 census without any explanation and then re-included in 2001 and further delineated in Consus 2011 due the advocacy efforts of disability activists in India, According to Census 2011, the disabled population in India is 26,810,557, which is about 2.21 % of the total population of India (Census of India, 2011) ‘The state in India has displayed reluctance in developing ® comprehensive ‘equitable policy for persons with disabilities, despite sporadic efforts initially in 1970-71 and later in 1980-1981 (Abidi, 1996; Advani, 1997). With the framing of the United Nations’ Rules on the Equalization of Opportunities for Disabled Persons in 1993 and increasing pressure from disability activists in India, the Govemment of India hurriedly enacted the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act in 1995, which came into force in February 1996 (Mobit, 2000). This forestalled the drafting of a ‘comprehensive National Policy on Persons with Disabilities which would clarify the government’s stance on the issue of disability by outlining initiatives, priorities, or guidelines that would then lead to the passage of laws necessary for fulfilling the directives mentioned in the policy. The Persons with Disabilities Act 1995 thus became the first policy statement in India, which recognized the rights of people ‘with various impairments to equal opportunity to participate fully in social, cultural, ‘economic and educational programmes of the country. ‘The PwD Act has defined disability primarily in medical terms, proceeding from the medical model of disability that ignores the social perceptions about disability (Mohit and Rungta, 2000). Thus, the categories of disability-blindness and low vision, leprosy cured, hearing impairment, locomotor disability, mental retardation and mental illness—are all dependent on certification by medical professionals. This highlights and legitimizes the control of the medical professionals over the1 Imzoducton:Interrogating Disability in India 9 diagnosis, management and interventions for the disabled. Moreover, many dis abilities are conditions that may not need medical interventions or management, but a more inclusive attitude towards the disabled person and hishher needs. The main thrust ofthe Act has been to spell out the State's responsibility towards prevention of impairments and protection of disabled people's rights in health, education, training, ‘employment and rehabilitation, The Act treats disability as a civil right, and lays down provisions for creating a barrier-free environment for disabled people as well as removing discrimination and abuse against people with disabilities, There are extensive strategies Taid down for development of comprehensive programmes and services for equalization of opportunities for disabled people and provisions for the integration of disabled people into mainstream society, The Act also emphasized the need for supporting institutions for persons with disabilities as well as social security provisions for the disabled (Advani, 1997; Mohit and Rungta, 2000), ‘The National Policy for Persons with Disabilities in India 2006 is a state response to the United Nations’ Convention on the Rights of Persons with Disabilities, which was passed in 2007 and became an international law in 2008 (Government of India, 2006). In an attempt to clarify the framework under which the state, civil society and private sector must operate in order to ensure a dignified life for persons with disability, the National Policy for Persons with Disability recognizes the need to replace the earlier emphasis on medical rehabilitation with an emphasis on social rehabilitation, Although the National Policy “recognizes that persons with disabil- ities are valuable human resource for the country and sceks to create an environment that provides them with equal opportunitis, protection of their rights and full par- ticipation in society”, it limits itself to only reiterating the provisions enlisted in the already existing laws for persons with disabilities in India, This “forward looking” policy thus ends up endorsing the medical model of disability by keeping intact the process of identification of disabled people, requiring certification by panels of ‘medical doctors in order to access policies and entitlements 1.2.1 Programmatic Interventions for Persons with Disabilities in India In spite of focusing on different aspects of the lives of disabled people, the Act has sustained its inclination towards the medical model of disability, by projecting disability as an individual problem that can be remedied through different inter- ventions and specialized services. The Act has ignored the definitions of disability advocated by the social model, which lay more stress on the disabling barviers faced by people with impairments and press for structural changes within society. Thus, both the state and most of the NGOs working in the field have tacitly adopted the medical model of disability. The Indian Human Development report states “physical disabilities are genetic, biological and even birth defects andwo IN. Ghosh future research must focus on the medical causes of such disabilities” (Shariff 1999), As the recognition of a category of disability depends on its inclusion in the Act, people belonging to categories that have been overlooked are being sidelined and refused access to services. The stipulation that the disabled people will receive benefits according to the degree of theit disability totally ignores the impact of social, psychological or political factors on individual disability. As the provisions of the State depend on the medical certificate indicating the percentage of impairment issued by State Medical Boards, there have been reports of gross dis- ‘repancies in the awarding of the disability certificates ‘The implementation of the policy programmes and various schemes for the dis- abled people both before and after the Persons with Disabilities Aet 1995 has been ‘characterized by ad hoe and sporadic efforts on part of the slate. The disabled person has usually been treated as a compartmentalized being, with different aspects of hismher existence coming under the purview of different wings of the State apparatus, with litle or no coordination among themselves. For example, education and ‘employment concems of persons with disabilities are looked after by the Ministry of Social Justice and Empowerment, and the Ministry of Human Resource Development runs parallel systems resulting in a conceptual fragmentation of the core concerns (Alur 1997 cited in Ramanujam, 2000). This kind of segregation and individual intervention is rem of the me: affected part of tie Body tention a of the disabjed Berson are negated. The primary focus of the rehabilitation services continues to stress the ‘medical aspects of disability: prevention and carly detection of disabilities as well as the management of disabilities through corrective surgery, supply and fitment of aids and appliances and assistive devices, etc, State approach towards implementation of programmes has varied from benign neglect to complete dependence on ‘non-governmental organizations for delivering different services in remote parts of the ‘country, which has reached only 2 % of the disabled population, ‘The Census of India 201 has enumerated 26,20,974 children and young adults in the age group of 0-19 years. Yet in India the fact remains that a majority of children With disabilities do not have access to education. A World Bank Report (2007) highlighted that 38 % of the children with disabilities in the age group 6-13 years are out of school. The PwD Aet 1995 stipulates that every child with disability is ‘entitled to a free education up to the age of 18 years (Government of India 1996). However, the act teposes the responsibility for integration of students with dis abilities in rogular schools in local authorities, Alur (2003) observed that in India there is a dichotomy between policy and practice; the government promotes the ‘inclusionist” philosophy through its schemes and extends a parallel support to the ‘segregationist” policy by promoting the idea of special schools through their assistance to voluntary organization schemes. Programmes such as Integrated Eclucation of Disabled Children Scheme (IEDC) in 1974 and the Project Integrated Eclucation for the Disabled (PIED) in 1987, which existed even before disability legislation was enacted in India, met with limited success as exclusionary policies and practices prevalent all over regular schools in India, The Universal Primary Education (1997) programme and lately the District Primary Education Programme1 Imzoducton:Interrogating Disability in India u (DPEP) has had an impact on integrating disabled children as it addressed core issues related to curticulum, Most schools have not been able to remove even architectural barriers and hence still reuse admission to disabled children (Zachariah, 2001). The provision of only three resource teachers per block under the DPEP pattern has proved inadequate, as schools are spread over vast geographical stretches, limiting interactions between the teachers and students, Thus, education of people with disabilities has remained confined mostly to special schools in urban areas, ‘The Right to Education Act 2009, which came into force in 2010, guarantees right to free and compulsory education to all children between ages six to fourteen, However, there is very lite awareness about the provisions of the act among school personnel, parents and disabled people themselves, Some educators and parents Who are knowledgeable about government policies and laws conceming integrated ‘education are found to have positive attitudes towards implementing such programs (Sharma, 2001). The majority of school personnel in India are not trained to design and implement educational programs for students with disabilities in regular schools. Most teacher training programs in India do not have a module on teaching children with disabilities (Myreddi and Narayan, 2000). Also, placement of pre-service teachers in special or integrated schools is rarely given consideration angira et al., 1995), According to Census 2011, there are around 17,070,608 unemployed persons with disabilities. Although the government has established 47 Special Employment Exchanges and 41 Special Cells in the regular Employment Exchanges, the scheme has provided employment to only 49,000 disabled persons, most of whom had orthopaedic impairments, The special employment exchanges have achieved lim- ited success even though most of those registered had received vocational training (NCPEDP-NAB, 1999), The placement of disabled people in various private institutions has also been only partially successful. Ina survey conducted by the National Centre for the Promotion of Employment of Disabled Persons (NCPEDP) and National Association of the Blind (NAB) in 1999, it was found that 50 % of disabled people were self-employed as both public and private sector companies were found to be employing very Few disabled people. The reservation of jobs in identified government departments also has not been implemented properly, and the posts filled are mostly in the lowest ranks. The concept of identified jobs is itself ‘questionable as it may not take into account the actual capacities of people with disabilities (Rajalakshmi, 2002). ‘The National Handicapped Finance and Development Corporation (NHFDC), which finances a wide range of activities such as self-employment ventures and loans for education to disabled people, has also met with limited success because of the lengthy and cumbersome procedures for accessing its services. AA serious lacuna in the Persons with Disabilities Act is that there are very few penal provisions for non-implementation of its measures, The Act stipulates that in most cases programmes would be initiated and implemented subject to the eco- nomic capacity and development of the state, There are no time-bound programmes of action or obligations by the state for the initiation and implementation of the provisions of the Act. The enforcement ofits provisions has been left to courts of2 IN. Ghosh law without specifying procedures to be followed in case of violations of the recommendations. This makes the enforcement of the provisions of the law very debatable and totally dependent on the magnanimity of the State (Advani, 1997; Mohit, 2000). Consequently, many state governments and local authorities have Cited lack of funds as a reason for non-implementation of the provisions, especially those conceming access to public buildings and utilities. Campaigns for providing access to public buildings by disability organizations have been sporadic and limited to urban areas, yielding very little results. Although air travel has been made more accessible for people with disabilities following a Supreme Court directive, the more commonly used modes of public transport such as buses and tains ‘continue to be inaccessible to the disabled (Rajalakshimi, 2002), A group of papers (Chakraborty and Mukherjee, Vaidya, Nagchoudhuri and Juvva, Ghosh and Sapra) in this volume explore the quality of life of people with disabilides in terms of their individual attainments, within families and cultural ‘contexts, in social encounters and workspaces. Achin Chakraborty and Subrata Mukherjee use NSS S8th Round, 2002, and Census 2001 data to illustrate con- nections between the gender, living arrangements and marital status, which reveal the fact that the nature and extent of disadvantage follow distinct patterns among men and women and influence very important functionings that constitute the ‘well-being of persons with disabilities. Nandini Ghosh discusses about the gender socialization of women with disabilities and the ways in which they negotiate their femininity and gender identity by positing a different yet acceptable feminine ‘conduct which takes into account their physical limitations yet stays in tune with the larger genilered contexts, Shubhangi Vaidya argues for the need of a social security net that will address the long-term needs of vulnerable populations as the language of rights and the emphasis on autonomy, agency and independence that has underpinned the disability rights discourse finds itself on shaky ground in this context. As Rights alone cannot guarantee a humane society until they are backed by caring practices, there is need for a model based upon an acknowledgement of ‘mutual dependence as the common human condition, the ereation of ethical caring ‘communities where individual worth is not measured in utilitarian terms and the right to live and die with dignity is guaranteed to all irespective of the way their minds and bodies work. Madhura Nagchoudhuri and Srilatha Juvva argue that developing an understanding of disability as “socially constructed” is essential to realizing personal power for persons with disability. Many people with disabilities skilfully use to their image as a “powerless” and helpless person as a tool to gain power and to have influence. Drawing on case studies from different groups of disabled people, the authors illustrate how this dynamic of use of power by sub. ordinate groups operates through the leveraging of their vulnerable status. Ipsita Sapra highlights the struggles of persons with disabilities in rural 24 Parganas South fof West Bengal in terms of livelihood pursuits that enable them to combat ide- ologies of dependence and yet Ieave them economically dependent on families and ‘communities, This paper demonstrates thatthe livelihood insecurities that disabled people face as a result of the impairment rarely takes into account their range of ‘capabilites, functioning and conversion handicaps in their pursuit for livelihood.1 Imzoducton:Interrogating Disability in India B 1.3. Emerging Discourse on Disability Contradictions and Contestations ‘The Persons with Disabilities Act, 1995, has been criticized severely for overtly privileging medical definitions of disability. The UNCRPD, the first human rights treaty of this millennium, came into force in May 2008. India signed this con. vention on the very first day and ratified it without any reservations in October 2007. With the signing and ratifying of the UNCRPD by India, disability activists across the country rallied to demand for a new legislation to fulfil the commitments under the UNCRPD. This process of amendment had been initiated many times ‘even before the UNCRPD but with no concrete results. The Ministry of Social Justice and Welfare, Government of India, constituted a New Law Committee in April 2010 under the chairpersonship of Dr.(Mrs) Sudha Kaul, who has decades of ‘experiences of working in the field of disability in India, The other members of the ‘committee comprised representatives of Central ministries, state governments, Aisability rights activists, parents of persons with disabilities, civil society organi- zations and persons with disabilities along with the Chairpersons of the National ‘Trust and the Rehabilitation Council of India, In view of the legal expertise required to draft the new law, the Committee appointed the Centre for Disability Studies (CDS), NALSAR University of Law, to support and assist the Committee in putting together a working legal draft. The mandate of the committee was to draft a ‘comprehensive rights-based law in accordance with the provisions of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). ‘The UNCRPD introduces a paradigm shift in the realm of disability rights from the welfare approach to a rights-based approach, This means that persons with disabilities are seen as subjects rather than as mere objects of social welfare. The new Rights of Persons with Disabilities Bill 2011 focuses on legal capacity, ‘equality and dignity of the disabled, Drawn after open and transparent consultations with key disability groups and members of civil society, the new Act is guided by the principles of inherent dignity, individual autonomy, equal opportunity, acces- sibility, respecting differences, acceptance for all, and evolving capacities of chil- dren with disabilities among others. While outlining a list of rights that persons with disabilities are entitled to, the Bill also elaborates on the role ofthe state and Central government with regard to implementation. The Bill is different from the previous PwD Act 1995 as it moves away from the purely medical model to incorporate the social and medico-legal approaches. Disability is no longer seen as a purely per- sonal “problem” but rather a challenge that has to be met by the State and society through suitable provisions. The Bill also takes into cognizance the autonomy of persons with disability and the freedom to make choices. ‘The Billi a shift from the charity paradigm to a more rights-based approach. ‘The law-making process has proved to be challenging primaily because of the ‘competing demands of a large and diverse sector. However, in a society that has systematically discriminated against persons with disabilities and has rarely con sidered their rights; the new law will be the frst step in a long-drawn movement.6 IN. Ghosh ‘The new law offers an outstanding opportunity to bring about a change in societal perception as persons with disabilities ask the world around them to be rebuilt in acknowledgement of their existence and not in ignorance of it. However, the dia logue on the new law for persons with disabilities in India has been fraught with several debates, with different groups of people claiming different vantage points for rallying and establishing their own demands, On the one hand, it has been the old and time-tested lobbies of specific disabilities such as the visually impaired and the locomotor disabled dominating the dialogue and shaping the debates. Silenced voices like that of people with hearing impairments, people with intellectual impairments and people living with mental illness remain in the margins even though some groups advocated strongly for their inclusion. The issues around accessibility tended to focus more on needs of the dominant groups, with more atention being paid to accessibility to buildings, wansport systems and public spaces. Framing of such detailed provisions for physical access often ignores the role of social disability in form of discrimination and oppression, One of the major debates revolved around the issue of defining disability in the new law, in consonance with the way in which it has been done in the UNCRPD. However, since many of the members of the drafting committee were government officials, still rooted in the medical model which is more concrete and allows for a rigid categorization of disability, the definitions were still sought to be in the ‘medical mode. This is because historically the definition of disability in India has ‘been linked to welfare and disabled people have been seen as recipients of charity through different schemes. A medical definition of persons with disability is therefore more amenable first for identification and then for doling out support based on degree of disability, ignoring thereby the social oppression and discrim- ination faced by disabled people on an everyday basis. But as oppression is difficult to express in quantifiable terms, which is relatively easier to standardize and clearly understood by people who are implementing the schemes, the pressure to Tever! 10 ‘medical visible quantifiable definitions of impairments is high. The new law has tsied to blend both view points, by combining a generic definition of disability in tune with UNCRPD with an impaitmentspecific additional definition, which is to >be reviewed by competent authority from time to time. However, the polities behind recognizing and constituting competent authority may well be dominated by the ‘medical and specialist lobby. ‘The lobby of the specialist professionals, almost all of whom are non-disabled, ‘emerged even strongly in the frst few drafts of the new bill. Hence, the chapter on ‘education, which should have focussed on inclusive education, was titled Education and Educator Training, with major focus being on special education and protection of the interests of the special educators, The provisions in the law seemed to be intending to provide legitimacy to these people who are more rooted in medicalized and technical interventions rather building inclusive education systems for all children, including the disabled children. As most of the members of the drafting ‘committee were either professionals themselves or run institutions of special edu- cation, the thrust on specialized services would ensure their survival. Leading blind disability activists also favoured continuous existence of special education in1 Imzoducton:Interrogating Disability in India 1s conjunction with so-called inclusive education, as their community has most ben: ‘fited from these provisions. The debate on inclusive education was limited by the special education professionals by citing the specialist nature of the interventions required for each type of impairment, which established the hegemony of different groups of professionals over domains of knowledge and rejected the possibility of ‘reating systems of learning that cater to difference, not just of so-called ability but also to other dimensions such as gender, caste, religion, ethnicity and language. ‘Another major debate was around legal capacity which has been recognized as a right in the UNCRPD, Legal capacity has been defined as the right to recognition ‘everywhere as persons before the law and interpreted as the right of every person With disability to exercise their own will, preferences and choices in all decisions that concem them. Thus, the UNCRPD recognizes that persons with disabilities ‘enjoy legal capacity on an equal basis with others in all aspects of life, especially in the matters of managing finances, holding and selling property and making deci- sions about ther lives. Debates around legal capacity have been very important for people with dominant disabilities in India as impairment has been associated with inability to make decisions about their own lives. However, the clause of legal ‘capacity is much more significant for people with severe impairments, intellectual disabilities and mental illness. During the process of framing the bill, parents of persons with intellectual impairments whose wards are protected through guardianship under the present National Trust Act 1999 completely rejected the according of legal capacity to their wards. Most parents felt that their wards would never be in a position to make choices about themselves and their lives and ran the high risk of causing harm both to themselves and to their finances andl property Parents also could not envisage a system where people with intellectual impair- ments had support for decision-making, moving them slowly towards degrees of independence. However, voices that came out loud and clear were also going to be affected by the loss of power and autonomy that the National Trust Aet had pro- vided. On the other hand, the lobby of persons with mental illness was strongest on the point of legal eapacity, as they have been historically denied of it, causing much bodily harm, financial loss and mental anguish, The clamour over inclusion and recognition of legal capacity also led some parents of persons with intellectual disabiligy to claim that persons with mental illness were not actually disabled, “Thus, the debate around the issue of whether India should have one compre- hensive law for persons with disabilities or a range of laws addressing concerns of different groups of disabled people has been interpreted in different ways by dif ferent activists and other stakeholders. Some groups of disabled people and their ‘caregivers felt threatened by the inclusion of all disabilities inthe scope of care and protection of particular groups of severely disabled people. The special protection offered by the National Trust Act to specific groups of people would, they felt, be removed if a comprehensive law came into foree and the National Trust would lose its efficacy and prominence. This debate, however, has focussed more on what these specific groups of people would lose rather than how the entire disabled population could gain with the bringing of all authorities and bodies conceming issues of disabled people under one umbrella, On the other hand, blind and locomotor6 IN. Ghosh disabled activists argued for a comprehensive Disability Code that would help to strengthen existing suuctures, where the primary document would spell out the ‘major provisions, while specific laws within it could address specific concems of different groups of people with disabilities. The main focus of ths line of argument \was to point out that disabled people are a homogenous category, but varied groups of people claiming commonalities are based on the experiences of discrimination and oppression, Disability activists, however, have claimed that the new disability Taw does not seem to reflect the principles and provisions of UNCRPD in its entirety, They have critiqued the process of drafting the law as one that has repeatedly insulted and sidelined persons with disabilities in India during the entire process of drafting the New Law. The process, which was meant to ensure the voice of persons with disabitidies unfortunately, became a barrier to their participation. The process, Which was meant to contextualize UNCRPD for India has led to the dilution of What the UNCRPD offers. The process has failed in initiating, facilitating and closing debates; this should have been done by bringing in the multiple dimensions and nuances of the issues like legal capacity, civil politcal rights, multiple dis- ‘riminations, processes of ensuring inclusion, processes of establishing the social model of disability and the convergence in the structures of state's authorities and their obligations. ‘The final articles (Chandar, Ghosh) problematize collective action by disabled people in the form of social movements to highlight their deprivation and the denial of their rights. Jagdish Chandar analyses the emerging trends and issues covered as part of the disability rights movement as well as the methods of advocacy adopted by the activists of this movement in the post-1995 period after the enactment of the PwD Act, He argues that the rights-based perspective is now widely embraced by the current generation of disability rights activists from cross sections of disability and the non-governmental organizations. Nandini Ghosh’s paper explores the df= ferent dimensions of the grass-roots-level mobilization in disability in the form of rural disabled people's organizations (DPOs), which have experienced success at local levels but have never managed to become a strong force atthe state or national level 1.4 Conclusion Interrogating Disability thus begins and continuously engages with the struggle to define and redefine disability. This process is ongoing for the last few decades with academicians and activists on the one hand evolving definitions that reflect social reality while policy-makers and administrators choosing to adhere to more concrete definitions that can be linked to schemes and entitlements. Academic and activist ‘engagement has traced the trajectory in the conceptualization of disability, varied notions of which coexists with and is often conflated with one another. While the dominant functional perspective focuses on a person's functional limitation1 Imzoducton:Interrogating Disability in India ” (Abberley, 1987), thereby placing onus on the impaired person to make additional clforts to be acceptable and accepted within society, the social model stresses that disability is an interaction between an individual with an impairment and an ‘environment that lacks adaptations, Thus, disability might appear in some situations Dut not in others and is thus relational as disability is seen as a relation between a person and her/his environment (Sader 1987). The social constructionist approaches to problematizing categorization attempts to reveal the inequalities and oppressions that have resulted from such categorization, which includes limitations on civil rights of the negatively identified group. The role of language in constructing ‘meanings and thus determining life worlds often gives rise to medically decoded ‘categories that do not reflect disabled people's experiences, Mairs (1986) feels that the term “differently abled” conveys the hopefulness that transformed countries from “undeveloped” to “underdeveloped”, then to “less developed”, and finally to “developing” nations, while ground realities remained unchanged, Policy-makers worldwide and in individual nation states, however, have been greatly influenced by the concrete definitions offered by the dominant medical paradigm which ensures measurement of disability and disabled people. Leading international agencies like the World Health Organization and Disabled People's International have based their definitional schemas on the concept of normality and the assumption that disabled people want to achieve this normality. While the World Health Organization stresses normal social roles, Disabled People’s International highlights the normal life of the community. Increasingly, these international agencies, influenced by the global disability movement, have come to acknowledge the sociopolitical understanding of disability that recognizes that the physical, built and social environment are fundamentally shaped by public policies that reflect attitudes and social values, which contain many aversive or prejudicial perceptions of persons with disabilities, The achievement of the disability move- ‘ment has been to break the ink between physical bodies and the social situation and to focus on the real cause of disability, ie. discrimination and prejudice (Shakespeare, 1994), State policies have started to reflect this consciousness of discrimination existing in the attitudinal environment of society, despite being pegged on the medical notions of normality for categorization of persons with disabilities. So, while globally disability activists have been increasingly calling for the celebration of difference rather than on restoration of normality, the persistence of the idea of normality demonstrates how ingrained and deep-rooted the ideology of normality is ‘within social consciousness. States are concerned with the measurement of dis ability and disabled persons as allocations for welfare are usually decided based on the categories and numbers that correspond to them. Hence, censuses and surveys, aimed at serving administrative purposes and indicating distributive responsibilities of the welfare state (Stone 1985), primarily use functional definitions (United Nations, 1991, 1996, 2006). The welfare state, fighting the rising costs of social security uses such definitions to allocate resources to support particular categories of people, while denying the same to others8 IN. Ghosh ‘Thus, two important agents of the administrative definition are politicians and welfare authorities. In recognizing that disability is finally whatever public officials say it is, both social scientists and decision-makers must also be aware that understandings are shaped primarily by the concepts inherited from previous research. Any approach to the formulation of disability policy that fails to ‘encompass the political aspects of this problem, therefore, may be inadequate. ‘Thus, the multiplicity of conceptual paradigms that define disability, the disabled person and disabling social structures present a challenge to the measurement of Aisability as definitions used by researchers and practitioners need to be adapted to various cultural and social contexts (Baylies, 2002; Groce, 2006). Over the last decade, however, there have been major steps taken to reconcile these various views by looking atthe disabling condition, or the interplay between the individual siuation and the collective resources (and limitations) that may make an individual impairment a social disability. Here, Sen's capability approach (1999) offers an altemative approach by defining disability as a lack of capability, thereby placing disability within a wide spectrum of human development. Sen's (1999) conceptualization of the individual's capability set, that is, the substantive freedoms s/he enjoys to lead the kind of life ‘fhe has reason to value, which influences both what a person is able to do and to be effectively, through realized functioning and achievements, such as travelling, feeding, accessing education and health centres, and all that a person is potentially capable of if opportunities are provided (Bakshi and Trani, 2006). Such a view provides broadcr insights into the issues related to disability since it proposes to Took not only at what a person actually does (his/her functioning) but also at the range of possibilities from which s/he chooses that specific functioning (Sen, 1999), Under the capability approach, disability may be understood as being the result of a ‘combination of different factors, It may result from (a) the nature of an impairment and other personal characteristics (e.g. age, gender, race), (b) the resources available to the individual and (c) the environment. Thus, at one level, deprivation can result from the very nature of the impairment, irrespective of other personal character- istics, the amount of resources available to the individual, and the environment, On another level, deprivation can be the result of barriers in the environment, in its physical, economic, social, political and cultural aspects. At a third level, depri- vation can result from the economic constraints that impairment may place on the availability of, and demand for, resources, or may induce higher costs to achieve a given level of advantage or well-being (Mitra, 2006). Following the capability approach, the full range of the disability experience can be covered, shifting the focus away from the restricted view of identifying types of impairment, ‘As Terzi (2003) posits, using the capability approach entails examining the full, sot of capability one person can choose from and assessing the value an impairment has on this set of freedoms. Focusing on developing potentialities means to look at the adaptability of the individual to an ever-changing social context, the ability to tackle and even change the elements of the context that make a situation disabling for a given person. This approach stresses the interplay between characteristics of the individual and the social groups that she belongs to, as Well asthe institutional1 Imzoducton:Interrogating Disability in India » factors that may influence or even hinder his/her choices (Bakshi and Trani, 2006), ‘This approach also takes into account the agency of the individual in terms of the extent to which extent the person considers himvherself as the main actor and decision-maker in his/her own life. It is the “ability to form goals, commitments, values, ete.” It is recognizing a person as “someone who acts and brings about ‘change, and whose achievements can be judged in terms of her/his own values and objectives, whether oF not we assess them in terms of some external criteria as well” (Sen, 1999), By taking the view of the individual, we look at the interaction between the person, with his/her limitations in functioning (which may or may not be permanent), and the context, which consists of a number of resources as well as ‘expectations, stereotypes and often prejudice and discrimination. While defining disability at the level of individual functioning and taking into consideration the sociocultural barriers, one hopes to create an alirmative purpose of rehabilitation, \Which impacts individual functioning. Measuring needs of disabled people and thus planning for their medical and rehabilitation needs in terms of enhancing functions necessitates this kind of definition. As a result, the policies that would be set up would aim at establishing an equality of activity and participation Yt there is need to understand the importance of a subjective understanding of disability (Morris, 1993; Thomas 1999; Wendell 2001) as stressed by intersec tionality and identity studies has led to redefining of disability as a positive aspect, of a person's identity. Disabled people have multiple identities and contemporary (social scientific) definitions of disability have been criticized for not being sensi- live to the intersection between disability and gender. Such criticisms consider that a “proper” definition must recognize disability as a multifaceted phenomenon (Thomas 1999), Construction of the body and impairment-related experiences determined by access to a range of social and material resources and disabled people face oppression due to pursuit of profit over inequality and social justice The nee inequality increasing in all capitalist countries and global economic erises, The struggle for a fairer and inclusive global society is difficult, Hence, there is a need for more active political activism and scholarship to generate a shift in perception of disabiliy in order to bring about a change in the way in which both disability and disabled people are viewed globally and in local contexts. The attempt of this volume is to highlight the ways in which valued social attributes of personhood such as autonomy, agency including rationality, control ever one's body and life links up with concepts of difference and interdependence in the lives of disabled people in India to shift away from structural analysis becomes particularly important with References Abberley, P, (1987), The concept of oppression and the development of a social theory of lsabiliy. In M.J. Deegan & N. A. Brooks (Eds), Disabiliy studies: Past present and fue Leeds: The Disability Press,20 IN. Ghosh Abdi, J. (1996). The advent ofan advocacy age, Dipsta (December ‘Advani, L. (1997). Rights by las. Paper presented atthe National Consultation Meet on Rights of Disabled Children Aur, M. (2003). Invisible children--A study of policy exclusion. New Delhi: Viva Books Private Timied Asch, A. (2001). 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Bank Report, (2007), People with disabilities in India: from commiments to outcomes ‘Washington DC: Human Development Uni, South Asia Repion, World Bank. World Health Organisation. 2001). Intemational classification of functioning, disability and ‘health. Source: wn. tho inlonlinebrowseritcfm Feb 2004 acacia, J. 2001), Universal light of owledge: Opening new doors. Source: www nor! TANSHALA/march200/eduedisb hm, June 2004,Chapter 2 The Models Approach in Disability Scholarship: An Assessment of Its Failings Shilpa Anand Abstract The present chapter contends that the models approach to studying disability, when used in India, has litle descriptive or explanatory ability and has become a way of evaluating research studies and judging them. While critiques of medical models approaches to framing disability have facilitated aspirations and demands of disability rights movements the world over, its present use inthe Indian academic context requites critical examination. What is known as a medical mode! framing of disability cannot as conveniently deseribe or explain disability in the Indian context for multiple reasons. One, the social role of biomedicine in India is a ‘complex one because of the prevalence of different kinds of treatment traditions that are accessed variously and whose conceptualization of treatment, object of treat- ment and corporeality are different in different ways from those of biomedicine. Additionally, the models approach intrinsically affirms a progressive historiogra phy; the progression is from a moral or religious model to a medical model and then to a social-contextual model. Such a historiography is inadequate while tracing the genealogy of disabling conditions such as leprosy in the Indian context, Keywords Models approach - Medical model - Social model - Altemative medical traditions - Leprosy history 2.1 Introduction Disability studies conferences and seminars in India usually bring together a set group of scholars who are fairly well acquainted with the major debates of disability studies (DS), which is dominated by Western scholarship. But every event also S. Anand (2) Department of English, Maulana Azad National Uda Universiy, Hyderabad, Telangan, India ‘email shilpa anand gril com © Springer India 2016 2 IN. Ghosh (ed), Intrrogating Disability in Inia, Dynamics of Aslan Development, DOL 10,1007)978-81-322-3595-8.2Po S. Anand brings newer researchers working on disability to the fore and face to face with the ‘more established scholars. Often, such exchanges turn into tense encounters where an “established” scholar, in the discussion that follows the presentation of the ‘new” scholar, characterizes the latter's work as bearing strong resemblances to the “medical model”, This subjection to a trial where judgement is made on the “new” scholar influences the participation of the person in future disability studies con- ferences and scholarship. The “medical model crime”, if one may use that term, refers to research pertaining to rehabilitation of a certain category of disability or the use of terminology that draws heavily upon the biomedical framing of a disability, br even focuses on the individuality of the disabled person and not on the social ‘environment. The “erime” may be that the findings presented belong to the per- spective of a rehabilitation or educational professional, one that does not adequately of fairly represent the “voivels” or perspectivels of the disabled informants. Such kind of moral labelling forecloses the examination of the data presented or an analysis of why or how it might be “medical”. Such research may in fact contain important disclosures about the culturally’ specitic context that we belong to and research in, The present chapter critiques the “models” approach to studying dis- ability, that isthe use of the “medical model”, the “moral or religious model” and the “Social model”, which has become a way of evaluating research studies. This ‘chapter may also be seen as a status report on the way the models approach has been adopted in rescarch on disability related to India. It discusses the practice of using the “medical model” and “social model” to judge and evaluate a piece of rescarch which occludes the use of these categories as heuristic tools. In order to use these categories as heuristic tools, scholarly research would also have to test the ‘efficacy of the categories themselves while employing them to describe or explain, their research data; if not, these categories stand out as Holy Grails that limit critical advances in disability studies. This chapter investigates the role played by the models approach in research related to disabilily in and oulside of the Indian ‘context. In order to do so, the chapter examines recent scholarship that draws on field studies and research in social medicine and medical anthropology that attempts to historicize disability. A second intent of this chapter is to present a close reading of critiques of the models approach that have received lesser recognition in dis- ability studies scholarship as the more prominent research, and scholarship has \holeheartedly embraced the models approach. Such a reading becomes essential for researchers and scholars so that they may engage with the models approach ‘more critically while not denying that its adoption has facilitated a necessary cor rective to the erstwhile one-sided conceptualizing of disability as a medical phe. nomenon and experience, "The term cule, for the purposes of this chapter, may be understood as “configuration of Tearing” and as # way of going about the world,2 “The Models Approach in Disbity Scholarship 2s 2.2 Elaborating the “Models” Approach ‘What is the “medical model”? And what does charging a type of research as being ‘medical model entail? Medicalization of disability has been identified as presenting fa restrictive understanding of disability. AMI practices that address disability as disease ot a8 deficit conditions that ean be cured of fixed in some way are con- sidered to medicalize disability. This charge of medicalization in theoretical terms is called “the medical model” within disability studies which is primarily driven by the disability rights movements in the UK, and the corrective is supplied in the cial model” framework, Variations of the models approach include the “strong social model” that emerged in Marxist-style disability studies discipline in the UK in the 1970s as well as critiques of the “individual model” or the “deficit model” that were widely used in the American context a little later. These theories of medicalization and efforts to practice the social model as a corrective have served several purposes aver the decades: (a) To enable disability as a category of polities—disability rights movements in different parts of the world have embraced the social model of disability as an attempt to demedicalize and depathologize disability and thereby enter the identity polities paradigm. The medical model has played an important role in putting disability on the social movement map. Tom Shakespeare refers to this ‘asa “political strategy” in the UK context. In the American situation, critiques ‘of medical or individual approach—that resulted in various systems of dependence such as insttutionalization—were used to enable the “indepen dent living movement”. (b) To change law and policy from an orientation that focused on addressing only the individual with disability to a focus that would address the structural factors such as physical and social barriers and restrictions, The UNCRED is a ‘good instance of such an initiative, The Americans with Disabilities Act (1990) in the USA and the Disability Discrimination Act in the UK (1995) are both legislations that are based on social models approaches. They refrain from defining disability on the basis of biomedical characteristics (which ‘address only the individual) and tum the onus on treatment of disabled people ‘as well as physical and social barriers that hinder independent living. These Jaws emphasize the improvement of social factors that enable a beter quality ‘of life for disabled people alongside rebabilitation measures that focus on correcting the impairment in the disabled person. Similar features are the mainstay of the UNCRPD which is to guide furure disability laws the world ‘over. The Rights of Persons with Disabilities Bill that is stil being debated in India, a bill that seeks to be in compliance with the UNCRPD, upon being ppassed, will replace the fairly medically oriented existing disability law in India, the Persons with Disabilities Act 1995. (©) The models approach has played an important role in furthering the rights-based approach and enabling disabled people as participants in decision-making related to education, employment, law and policy related to26 S. Anand ‘access to public spaces over the last few decades in India. As a result of this, disability has emerged both as a sociopolitical and as an identity category ‘within disability rights articulations, Participation of disabled people in all forms of public life has become a reality in many parts of the world over the last three decades. The rights-based approach has been able to effectively check the advance of different eugenic practices, bring about the termination ‘of dehumanizing practices of psychiatric institutions and introduce the practice of ethical medical procedures. (@ The models approach has facilitated the emergence of disability as a non-negative category or as one that does not predominantly indicate a “state ‘of injury”, Disability as a category of diversity is being forwarded by several disability activist groups in the West in imitation of the civil rights movement in the USA. This argument has also been used by identity movements by other minority and marginalized groups such as the LGBT and Dalit (socially and economically marginalized) communities. This emergence of disability ‘minority identity has aimed to move beyond the tights-based framework to ‘one that demands a sociocultural identity, ic. a move towards an identity politics framework, a good example of which is the deaf community’s assertion of deafness as a linguistic minority. While the models approach has facilitated a strong social movement framework in policy making and governance, how can we appraise its role within academic research? Tom Shakespeare, an important voice in the disability movement in the UK as well as disability studies scholarship makes an important assessment of the models approach. Shakespeare argues that one of the problems with the social models approach in disability studies over the decades is that it has been posited as “unchanging”, as if its fundamental ideas are “correct and indispensable” (Shakespeare 2014, p.20). The British social model, he says, is probably “one of the only areas in academia that still proudly maintains allegiance to Marxist orthodoxy” (2014, p, 20) that it persists as an outdated ideology-based academic framework. Shakespeare's primary move is to pronounce that the distinction between impair ment and disability, as forwarded by the models approach scholars, is an artificial one, He argues that the distinction between “biological/individual impairment and social/structural disability is conceptually and empirically very difficult to sustain” (2014, p. 21-22), Social circumstances and biology are inextricably twined in cases ‘where the impairment is caused by social conditions. He cites cases of impairments generated by poverty and malnutrition and in situations where pain-alleviating treatment may not be available easily because of controls placed on distribution of «drugs or poor income. In the latter case, the social restriction combines with the impairment in such a way that we cannot argue that the mere lifting of the social restriction would reduce the eflect ofthe impairment, because the social restriction is ‘brought into play by the very existence of the impairment. Further, Shakespeare argues that impairments are socially constituted as well and not only biologically. In the case of mild intellectual disability, the level of 1Q that determines the having ot ‘ot of impairment is determined socially. He explains that “dyslexia may not become2 The Models Approach in Disability Scholarship a « problem until society demands literacy of its etizens” (2014, p. 28). He elaborates ‘on social expectations that cause or exacerbate impairments and therefore impact the psycho-emotional well-being of a person with a physical impairment such as a spinal ‘cord injury or a person diagnosed with a degenerative disease like multiple sclerosis. In such situations, removing the physical barrier or an economic bartier may not facilitate well-being because of emotionally distressing factors such as negative reactions from family members or colleagues at work or even the hyper-visibility of ‘media representations of multiple sclerosis. Shakespeare cites this situation as one where we may not be able to distinguish between the impact caused by disablement tnd the impact caused by impairment A more recent critique of the models approach comes from Aimi Hamraie. She criticizes disability studies (hereafter, DS) scholarship for not adequately theorizing the “models framework” (Hamraie 2015, p. 110) as an “epistemic apparatus that the field of DS constructs” (2015) which enables the field to make truth claims about histories and epistemologies of disability. She argues, adopting insights from Foucault's method of archaeology, that DS scholarship does not go beyond articu- lating situated knowledge. Hamraie, then, is interested in placing “the models ‘framework within broader conversations in the history and philosophy of science in order to foreground the constructed, contested and contingent nature of systems of knowledge about disability” (2015, p. 111). The “models framework”, according to her, is not critical or self-conscious of its adoption ofthe progressive historicizing of disability which it assumes to be truc, ic. the progression from a moral model to a ‘medical model and then on to a social model. The assumption that this progression is true limits DS scholarship from investigating messy contexts that show evidence of a mixing of moral and medical factors, The framework also tends to mischaracterize non-biomedical medical technologies as belonging to a premedical moral realm. She proposes the method of historical epistemology to be incorporated within DS research so thal this field of inquiry may also re knowledge upon bodies, techniques and systems and analyse the systems of for- mation of knowledge (savoir) that make bodies intelligible” (2015, p. 115) Both Shakespeare and Hamraie’s analyses have important implications for the present chapter as wel as for the changes it seeks in contemporary disability research in India, They demonstate the limits of the models approach within the Anglo-American Wester context but do not grasp the complexity of cultural situ- atedness of the models approach and the problems that arise when we try to study disability in contexts that are as distinct as the Indian one. While Shakespeare's critique casts the non-West as socio-economically different, Hamraie dismisses the cultural approach to studying disability as just another social-contextual approach that is invested in the ideology of situated knowledge. ‘There appears to be an assumption that culturally different contexts can be described and known in terms of concepts that are native to Wester epistemology. For instance, the use of the term “global South” is adopted and it succeeds in marking out the regions labelled thus in terms of socio-economic difference or in terms of religion and sociocultural prac- tices. The category “global South” however misses the point that culturally diferent ‘contexts may be so because their ways of knowing about and going about the world eal “the material effects of28 S. Anand are peculiarly constituted. We may be researching a context that may not be at all intelligible through concepts such as “moral”, “medical” and “social” and may therefore require us to develop a set of methodological and theoretical tools that will reveal what those concepts are. A culturally contextual way of theorizing would have to consider not just culturally situated knowledge but how that knowledge is con- cceptually and methodologically different. The scholarship reviewed here offers insights into these conceptual and methodological differences that disability schol- arship pertaining to the Indian context would have to take cognizance of. If we are to take the Indian context as culturally different in its engagement with concepts affliated to the disability cluster—impairment, illness, medical diagnosis, family, development of institutions, social practices, notions of the individual, plural treatment practices—then it becomes relevant to critically investigate the relations between cultural context and disability theory carefully. In due course, precaution will be taken not to settle for categories of cultural difference that have been posited by the West with which to study India, in other words Orientalist ‘categories. Harish Naraindas warns against the tendency to succumb to viewing and studying India as exclusively “religious” when compared to other cultural contexts (2001). Another instance isthe use of karma, supposedly a category of fatalism that is peculiar to India, as an explanatory frame with which to comprehend all notions of and attitudes towards disabled people. The chapter will conclude with a reflection fn issues pertaining to theorizing disability in the Indian context and what this review of the models approach can bring to such a theorizing. 2.3 Formulating a Cultural Critique of the Models Approach Medical model research is classified as such by virtue of certain determining fac tors: one, the dependence of the research on biomedical categories that are treated as fixed and treatable; two, that the affected person exists (within the realm of the rescarch study) as an individual entity whose voice is undervalued and to whom the treatment is administered after verifying that he or she requires a certain procedure established through objective methods of enquiry. Taree, that there is a notion of “deficit” or “tragedy” associated with the individual affected which presents dis- ability as a burden, flaw or negative aspect of the individual's personality, Given that these are the criteria for determining aspects and phenomena in the research field as medical model, what are some of the concems they raise when collecting disability-related data? Insights from disability-related fieldwork: Sociological and anthropological ‘ethnographic fieldwork undertaken by disability researchers has revealed that itis not easy to identity and classify phenomena as being patt of a medical model; itis rot a useful way of classifying responses. Respondents do not use biomedical cat- egories to identify themselves as disabled (Staples, 2012; Mehrotra, 2013). James2 The Models Approach in Disability Scholarship » Staples's ethnographic research in Hyderabad is about “how and when notions of ‘disability’ were invoked” (Staples 2012, p. $58) and why they were being invoked His interest was in finding how disability is constituted discusively and in everyday practices. Significantly, his essay, “Culture and Carclessness: Constituting Disability in South India", begins with an afiemation that the oficial discourse of disability in his field area is definitively set within the medical framework, be it the government's categorizing of disability or NGO approaches to addressing disabled people's needs. He observed the ways in which disability is invoked rhetorically in the context he studies to identify the distintions between the offical discourse and people's use of the concept. Like Shakespeare, he finds eategories of impairment and disability limiting, as there is afar more complex interaction between notions ofthe individual that are grounded in moral practices of individual selves and families. While interviewing medical practitioners and rehabilitation experts, he finds that they are ‘quick to morally judge their patients who come to them for disabilty-related ‘ucatment by calling them “careless”. They atribute “carelessness” as the eause of disability and the "carelessness", usually a euphemism for actions resulting from being poorly educated or being poorly informed, ranges from the patients" faith in non-medical cures such as visting shamans or offering sacifices at places of wor- ship, to their inability to care for the disabled family members by accessing timely health care. Social structural factors such as poverty, unemployment or the hardships ‘experienced because of poor lifestyle of migrant labourers were hardly ever iden- titled as causing disability, factors that were highlighted by the social model. These medical practitioners who were themselves notin favour of the patients espousing religious remedies for their disabling conditions didnot hesitate to assume a god-like position in dismissing patients” lifestyles s being immoral In his informal conversations with lay people in Hyderabad in southem India, such as aulo-rickshaw drivers, steel vendors, shopk people he may have met in waiting rooms of lines, tapes finds thatthe rhetoric is not Very diferent from that of the medical practitioners. They identified poverty, inability to take care of oneself, improper sexual relations, not accessing repro- ductive healthcare and as individual failings ofthe disabled person or as failings of the disabled person's family. What is important to note here i that socal structural problems are identified as personal failings of disabled individuals. These responses then rouble standard DS notions of “medical, “moral” and “social”. The medical model, which is also known as the individual model, is almost absent in these ‘exchanges where it scems to be an individual's moral esponsibility to ensure a proper upholding of social structures. Funher, Staples finds that his respondents’ “stated views about disability were ‘frequently strongly at odds with their relationships with actual disabled people” (2012, p. 566). In their personal interactions with disabled people, the sense of personal responsibility attached to people not accessing timely health care vanished and was replaced by an attribution of their disability to fate, god's will or not having the resources to access timely medical care. Staples also add that attribution to fatalism was rhetorical in nature and respondents seemed Somehow aware of using fatalsm rhetorically to respond to certain questions, Staples qualifies the fatalism as ers, students and other20 S. Anand a thotoric because of his awareness ofthe types of treatment that the affected person had sought out in the hope of a cure before deploying such fatalism. He also finds that the fatalism serves as a thetoric that is part of being in a disability context, rather than being indicative of what the person really thought of their condition, or of someone they knew or lived with. The significant finding here is that causes of disability in disabled people known to the respondents were differently attributed when compared to causes attributed to “disabled people” as a more general and abstract, third-person category. It would be inappropriate to categorize these responses that invoke fatalism routinely as being purely of a “moral” variety Fieldwork conducted by Veena Das and Renu Addiakha in Delhi also has sig- nificant implications for an assessment of the models approach, Das and Addlakha (2001) find that notions of personhood are located not at the individual level but at the intersections of the family and the state. They adopt the method of listening in fon rumour, gossip and other talk around the family of the disabled individual instead of a method of collecting data drawn from interviews where the word disability is enunciated explicitly. They find using the names of disabilities or impairment limiting in trying to understand the social relations of women with facial disfigurement and those diagnosed with psychiatric illnesses. They study the daily practice of kinship and domesticity within the familial context in relation to disability and impairment. With regard to one of their case studies, they find thatthe parents of a woman with facial disfigurement, in their attempt to give her as ‘normal” life as possible, forgo kinship relations and social interactions with their ‘extended friends and family (Das and Addlakha, 2001). In relation to this particular study of a woman with a facial disfigurement, in a post-Partition Punjabi family, the authors find that within that specific context, there appears to be the presence of “connected body-selves” (Das and Addlakha 2001, p. 520) and no evidence of the individual as we standardly know it, as a constituent of the “medical mod Tn Staples’s work as well, we find that there is a dependence on talk about disabling conditions by the affected individual and people around them (2012), Neither of these studies focuses on how well-versed affected individuals, their families and health practitioners are in the medical definitions and rhetoric of their ‘conditions, and so they do not lend themselves to conclusions about the ineptitude of people when it comes to being informed about medical notions. These studies point to the uselessness of categories used within official discourses to relate to the \way that affected individuals and their families know themselves. Both these studies destabilise the significance attributed to disabled people's agency by indicating that this agency is not located at the individual level but atthe level of social interaction, While @ key method of the models approach is to give primacy to the ‘voice of the disabled person’, these studies emphasise that acts of speech are to be acknowl ‘edged and comprehended in the context of and alongside social interaction. The constitution of disability is found at the interstices of interacting voices of disabled2 The Models Approach in Disability Scholarship Py persons, their family, their kin’ and people around them, Based on the observations of their respondents’ actions, these researchers have shown thatthe social responses to disabled people may only be recorded through observation of their actions and not through a record of their opinions, which may be formulated in a particular manner to be in syne with popular discourses. Historical research and the medical model: Attempts to study the history of disability in the Indian context show that categorizing something within a medical model occludes rather than explicates an occurrence or a phenomenon, Leprosy serves as an illustration, A disabling disease with a long history of moral stigma attached to it, the only way leprosy could be made more socially acceptable was through a process of medicalizing by emphasizing its disease status. The case of leprosy is an important one as it demonstrates a more complex relationship between disability and the medical realm than what is understood as the medical model. It would be necessary to examine briefly the sequence of events and ideas that led to the moment when the medicalization of leprosy or its establishment as bacterial infection lent it a more tolerated social identity Buckingham’s (2002) study of leprosy in colonial south India, particularly the Madras Presidency, shows that the earliest responses to leprosy in India, prior to missionary involvement, were governmental and medical in the early 1800s. Her study of responses to leprosy in the colonial Indian context complicates the DS models approach of a historical progression from a more moral framework to ‘medical framework in knowing and treating disabling conditions, Her work Focuses fon the extensive research that was undertaken by authorities in the colonies when they encountered leprosy. This research, in the frst half of the nineteenth century, arrived at findings that were similar to those of experts researching leprosy in Europe. Buckingham also dacuments that medical systems indigenous to the Madras ‘context such as Siddha and the more pan-Indian Ayurveda had identified and dis. tinguished between as many as 18 types of leprosy of varying kinds and degrees. Leprosy discourses in India took a more moral tur later, in the mid to late nineteenth century, and became contextualized in a religious realm, most likely because of the West's experience of leprosy as a strongly moralized condition at an ‘earlier period. When the missionaries took over leprosy governance in India, it became increasingly & matter of the “moral model”, The leper's body was an important site where the contest between religions was dramatically played out Christian missions that setiled in India brought with them a story of leprosy that was plotted within a narrative that typified the leper as the innocent sinner, a reprobate 2shakespeare’s etiqu ofthe distinction between disability and impiment cited earlier in this chapter assumes thatthe voices of people around the disabled persoa, in the multiple seleosis instance that he descibes, may be neptive, thus adding tothe emotional aspect ofthe impairment of the disabled individ, This kind of an assessment of the voices of people surounding the ‘iseled person is dificult to make inthe contexts studied by Staples (2012) as well as Das and AAddlakha (2001), For one, the reactions ofthe people surrounding Uese individuals lead them to take actions of diferent Kinds in Das and Addlakha's study. Two, what these “voices” say has to ‘be understood in context an weighed as being thetorial or not, as Stples's study demonseates,