Abstract
The India Social Development Report 2016: Disability Rights Perspective of the Council for Social Development edited by Kalpana Kannabiran and Asha Hans has disability as its thematic focus. This could hardly have come at a more appropriate time, considering the fact that the new Rights of Persons with Disability (RPD) Act (2016) was unanimously passed by the Indian Parliament, in a fractious parliamentary session otherwise marred by disruptions and adjournments.
Disability as an axis of discrimination and an integral part of discourses around human rights and social development has only recently gained ground within mainstream social science and humanities in the Indian academia. The 11 essays that make up the first part of the report titled ‘Disability, Disablement and Disadvantage’, comprise new research in the area of disability and grapple with a range of critical issues, such as definitions and measurement; intersecting marginalities, notably gender; social participation in the domains of work and education; access to public goods and social spaces; and the operation of oppressive institutional regimes in the lives of persons with disabilities. The chapters draw attention to the diversity of the disability experience including intellectual and psycho-social disabilities, which complicate the reading of disability rights and open up the contentious and sensitive issues of care, custody and legal capacity.
The second part of the report titled ‘Vulnerabilities, Precarity and Social Development’, comprises essays on the status of the elderly, housing, displacement, labour migration, caste and sanitation and financial inclusion. The third part comprises the Social Development Index, 2016. However, this review lays greater emphasis on the chapters in Part 1, as disability frequently tends to be relegated to the margins within social research despite its sheer magnitude and complexity particularly within the context of a developing country.
As the editors underscore in their introduction, the attempt is to foreground disability both as a measure of diversity and a ground of discrimination with a clear focus on a rights-based approach which draws upon the principles of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), 2006 to which India is a signatory. They critique, in no uncertain terms, recent attempts by the government of the day to reconceptualise disability in mystical terms by floating the term divyang (divine bodied), pointing out that the ideas of deficiency and divine ability are ‘[ ] Siamese twins that constitute the disability stereotype’ (p. 2). They draw attention to the lack of primary research, analysis and information on disability, and the fact that the issue of disability is largely absent from the purview of social research inquiry that tries to understand the nature of social relations. This collection of essays is an important attempt to break the impasse.
Ashwini Deshpande’s chapter attempts to address the data gap by drawing upon a variety of data sets including the National Sample Survey, the Census of India, the Indian Human Development Survey and the National Family Health Survey. She underscores the need to understand the magnitude and multiple facets of disability and the overlapping disadvantages that impinge upon it, arguing that this is a pre-condition for the development of ‘disabled-friendly’ policies. The chapter draws attention to the ambiguities surrounding conceptual definitions of disability; likely underestimation; rural–urban differences; the gender dimension; literacy and workforce participation; and disability amongst dalit and adivasi populations. The chapter also refers to the ‘disability index’ which ascribes a numerical value to multiple axes of exclusion; and the ‘Disability-Adjusted Life Years’ (DALYs), an important index related to the economic implications of disability that is found in the development literature. The author calls upon scholars, practitioners and policy makers to deepen their understanding of the complexity of the category and the direction of policy discourse.
One of the crucial intersections that has been addressed powerfully by disability studies scholars globally and in India over the years has been that of disability and gender. The essays in this volume too embody a strong gender focus. In her chapter, Asha Hans highlights how women with disabilities fall between the gaps of gender-specific and disability-specific laws, and thus, find themselves out of the pale of policy frameworks. She deliberates upon the intersections and synergy between the UNCRPD and the Convention on the Elimination of all forms of Discrimination against Women (CEDAW) while taking us through the range of discriminations in both private and public spaces experienced by women with disabilities, including ill thought out ‘welfare’ schemes like providing cash incentives to men to marry women with disabilities. The chapter by Mahima Nayar and Nilika Mehrotra highlights the enhanced vulnerability of ‘invisible’ and ‘voiceless’ women with intellectual and psycho-social disabilities who face abuse, coercive treatment and violence as they are robbed of their legal capacity to make their own decisions. The ‘denial of personhood and identity’ (p. 189) plays out both within the home and institutional settings, where they may be subjected to incarceration and detention, forced psychiatric treatments, sterilisation and denial of reproductive rights. The chapter by Kriti Sharma draws upon a field study of state institutions in Bihar and Kashmir, and asserts that denial of rights, discrimination and violence are routine occurrences for psycho-socially disabled persons in state custody, be it in shelter homes, hospitals, detention centres or prisons (p. 199). The chapter highlights the connections between poverty, conflict, violence and mental illness. It documents in chilling detail the dehumanisation that institutionalisation brings in its wake.
Providing a nuanced perspective on disabled childhoods and care giving, Nandini Ghosh and Supurna Bannerjee draw upon case studies of girls with a range of disabilities in the states of West Bengal, Jharkhand and Odisha. Contrary to the notion that girls with disabilities experience rejection and neglect from the family, the authors highlight the extreme care and concern of parents towards their disabled daughters (sometimes leading to over-protectiveness and cossetting) and their attempts to access whatever rehabilitative, educational and other interventions that are available to them. Sadly, it is the combination of factors like abject poverty and absence of information, services and facilities that makes them give up hope, thus making for a ‘heartbreaking narrative of multiple deprivations’ (p. 75). Girls with high support needs become a burden for poor families, especially with the onset of puberty, and mothers become bound in care work.
Pervasive exclusion, structural and cultural barriers and stereotypes are a harsh reality with regard to educational opportunities for persons with disabilities in India. The short, reflective piece by Jo Chopra-McGowan trains the lens on the philosophy and practice of ‘educational inclusion’—a much-misused term. Creating an inclusive classroom, she writes, ‘challenges our ideas of comfort and capacity’ and ‘puts us face to face with vulnerabilities’ thereby forcing us to reconsider the real meaning and purpose of education (p. 79). Emphasising the revolutionary potential of inclusive education, which is premised upon equality and the belief that every child is worthy and deserving of respect and equal opportunity, she also cautions against the mechanical herding together of children for the sake of ‘head counts’ and ‘government quotas’ (p. 80). This point finds resonance in the chapter by Kalpana Kannabiran and Soumya Vinayan which explores the challenges disability poses to higher education (HE) in India. Surveying disabled and non-disabled respondents across 23 universities in India, the study draws attention to a number of key issues that require attention in order to transform and open up higher education to the ‘life experience and worldviews of persons with disabilities in all their diversity’ (p. 98). Some of these include limited access and uneven spread across disabilities, particularly intellectual, psycho-social and speech and hearing disabilities; very low numbers of teachers with disabilities; the continued reliance of students with disabilities on family and peer support in the stark absence of institutional supports and reasonable accommodations, and chronic neglect of scholars with disabilities. The pervasive experiences of stigma, stereotyping and plain callousness narrated by disabled scholars make for very uncomfortable reading. The authors write, ‘Recognizing the continuities between segregation and isolation in the public domain and barriers in HE is extremely important in order to move towards the dismantling of foundational exclusions.’ (p. 99)
The traditional framing of persons with disabilities as weak, incapable and recipients of charity has had an adverse impact upon their access to livelihoods and their status as productive members of society. The realms of work and employment and the participation of persons with disabilities in the labour market are taken up in depth in a set of chapters that provide empirical data as well as conceptual and theoretical discussions on disabled workers within the rural and urban labourscape. Drawing upon secondary data from the Census of India and the National Sample Survey and primary data from five villages set in a range of locales in Tamil Nadu, J. Jeyaranjan and Padmini Swaminathan trace the complex intersections between social structure, economic change and shrinking spaces for persons with disabilities. The shift from traditional methods to machines, new work agreements, nucleation of families and dwindling of traditional supports compounds their exclusion, and the callous and indifferent attitude of society at large is the final nail in the coffin.
Soumya Vinayan’s chapter on urban employment for persons with disabilities in Telangana draws attention to the multiple barriers faced by them in their everyday life, and attitudinal barriers that stigmatise, devalue and limit their access to social participation and the labour market. Vinayan draws our attention to the pre-conceived notion of persons with disabilities as a category of non-workers that emerged with the industrial revolution and capitalism, where only the able, productive body was deemed normative and valuable. She calls for a ‘recognition of persons with disabilities as workers, through enabling conditions and reasonable accommodation, which has deep outcomes for the development of social identity of persons and their well-being’ (p. 146). It is in this context that the creation of the category of ‘worker with disabilities’ under the Mahatma Gandhi National Rural Employment Guarantee Act (MNREGA) assumes significance, as highlighted in the chapter by Satish Agnihotri and Shruti Singh. The allocation of funds for creation of wage employment for people with disability (PWD), they argue, may not solve all the problems of PWD but does give them livelihood with a sense of dignity, moving them from a regime of charity and doles to the right to employment.
The themes that emerge in these chapters coalesce into a fundamental question, who is a ‘worker’? Kannabiran’s insightful chapter problematises the idea of ‘ability’ that underpins the discourse on labour in a fundamental way, presenting both, ‘an analysis of the opacities in labour studies and law relating to disability and employment in India’ as well as ‘the possible ways of breaking out of the cycle of misrecognition’ (p. 168). She notes the significance of the recognition of the ‘worker with disability’, particularly in the context of the provisions of the Rights of Persons with Disabilities Bill, a modified version of which has since been enacted into law in 2016 as earlier mentioned.
This section of the report is a significant contribution and will be an extremely useful guide for future research endeavours and policymaking. The chapters provide both a broad macro-level overview of disability and its intersectionality with other categories of oppression, as well as a micro-view of specific empirical realities and lived experiences.
The most interesting ones in the opinion of this reviewer are the ones pertaining to labour, work and livelihood, which brought to the fore the critical issue of reconceptualising disabled identities as contributing and valuable members of society rather than needy dependents. The emphasis on personhood, agency and human dignity runs like a thread through the entire volume. However, even though the diversity of the disability experience has been remarked upon by the editors, I would have liked to have read more about intellectual and developmental disabilities, care giving and the role of the family, particularly in the context of persons with severe disabilities and high-support needs. The role of rural and urban NGOs in the context of globalisation of the disability discourse and the interface between the healthcare system and disability are themes which need to be discussed further.
The second part of the report, titled ‘Vulnerabilities, Precarity, and Social Development’, comprises essays on the status of the elderly, housing, displacement, labour migration, caste and sanitation and financial inclusion. The chapter by K.S. James, T.S. Syamala and Supriya Verma provides a profile of India’s rapidly rising elderly population with special reference to employment and income, social security, functional limitations and disabilities. Their acute economic dependence (particularly women) and the lack of adequate care provision are underscored. Almost exclusive reliance on informal familial supports increases the precarious situation of the elderly, and the authors make a case for the creation of a formal system of care giving and social security net. One of the crucial aspects of social development is decent housing for all. The chapter by Gautam Bhan and Anushree Deb highlights the lack of access of affordable and adequate housing particularly for poor and marginalised urban citizens, and extends the concept of ‘housing shortage’ to ‘housing poverty’. The authors argue for a shift of policy emphasis from ‘houses’ to ‘housing’, wherein housing becomes an entitlement and a public good, and sustainable people-centric practices to achieve this end.
Subhash Gatade’s rich, sociologically informed analysis of caste, untouchability and sanitation policy, with special reference to the Swacch Bharat programme, highlights how purely technical solutions are not sufficient to grapple with the fundamentally social problems of ritual pollution, untouchability and manual scavenging. Disconnect between a ‘state perspective of development’ and a ‘community perspective of development’ (p. 250) becomes apparent sharply in Sujit K. Mishra’s analysis of displacement induced by mining. Mining communities are the people who bear the cost of development and are dispossessed by it. The author posits the concepts of ‘equity’ and ‘intergenerational equity’ such that a ‘sustainable mining community’ may be created. The chapter on women migrant workers from Kerala by Praveena Kodoth covers a wide canvas of family survival strategies, social structure and labour and migration policy. ‘Official perspectives on migration within the country and across its borders are held together by caste, class and patriarchal interests’ (p. 274). This reinforces their vulnerability and social disadvantage, thus impeding social development.
The last chapter in this section is an excellent discussion on financial inclusion by Tara Nair. She argues that financial inclusion cannot be delinked from the larger discourse on social inclusion, or merely become an exercise in opening bank accounts in the shortest possible time. Inclusion, she reminds us, implies the ability of the system to change in response to the needs of its vulnerable and excluded sections. It also involves putting in place appropriate institutional arrangements and allowing them the time and space to mature (p. 292). Prescient words indeed—in the light of the recent demonetisation policy of the current government and the rhetoric around ‘cashless economy’. The final section of the volume is the Social Development Index in which Surajit Deb utilises recent data to construct social development indices for 29 state economies in India.
This rich and engaging volume is essential reading for scholars in social science research and practitioners in development policy domains. It has whetted the appetite for fresh, interdisciplinary engagements addressing multiple marginalities and social development.