Guest Editorial: Debating the Disability Law in India
By Nandini Ghosh & Shilpaa Anand
With the coming of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2007, the paradigm shift in all thinking about disability became more focused on legal capacity, equality, and dignity. The UNCRPD urges member states to ensure the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability. Such a forward-looking framework has given disabled people, their families, and people working in the disability sector in India renewed hope of seeing a change in the way in which disability is conceptualized in India, both at the level of society and the state. At the heart of this change was the need to shift the focus from the person with the impairment to the social environment that was disabling – the attention would hereafter be on correcting attitudinal and systemic barriers that lead to neglect, ignorance, indifference and discrimination. Due to international obligations and the pressure by the disability sector in India, the Ministry of Social Justice and Empowerment constituted a Committee in April 2010 to draft a new legislation which would be in harmony with the UNCRPD. The Committee submitted the draft bill to the Ministry on 30th June 2011 after direct consultations with civil society groups representing persons with disabilities all across the country as mandated by the UNCRPD.
However, three years later, we are still debating the Rights of Persons with Disabilities Bill because it has been drastically revised at least twice, resulting in the removal of key aspects that had been painstakingly built into the framework of the law. Additionally, certain discrepancies have crept into the draft that renders it difficult to understand and, thus, implement. This issue of Cafe Dissensus seeks to explore the different dimensions of the draft RPD Bill in India with representations from across the spectrum – from persons with disabilities to lawyers, and from full-time activists to activist-academics. Jayna Kothari’s and Amba Salelkar’s articles outline the changes between the drafts and offer critiques of the processes involved in the transformation of the drafts as well as the problems these precipitated.
One of the major challenges for the legislation process is posed by the fact that disability represents a wide range and variety of conditions and impairments. Although it is meant to serve as an inclusive umbrella term to signify different impairments, congenital and acquired, the category disability has been individualised and medicalised globally and in India, also. Nevertheless, the diversity that constitutes this category has ensured that different groups of people have emerged, each highlighting their own concerns and seeking redress on narrow/focussed issues. Sometimes this tunnel vision has resulted in denying certain other disability groups of their demands and from voicing their concerns equally. Although the issues of the majority groups among the disabled people have received more attention and assumed priority in framing the provisions, none of these groups are represented in the writings here. The silence could be interpreted in many ways. Perhaps the major disability groups consider fora, such as the present webzine, rather ineffectual when it comes to lobbying for greater kinds of inclusion. However, we are happy to be presenting groups that are usually underrepresented because of their invisibility, their lack of voice due to multiple reasons or their plain elision because of the mainstream disability sector’s neglect of such ‘marginal’ disability groups. Michele Friedner’s piece in the collection traces the deaf community’s specific investment in the RPD Bill with regard to the sign language and interpretation clause as well as their struggle in participating in the meetings that led up to the drafting of the bill. Namitha Kumar’s article speaks of the significant impact the new bill will have on people with Thalassemia due to their first time inclusion within the category of disability, while also pointing to the questions that remain with regard to defining Thalassemia appropriately. Shubhangi Vaidya’s piece raises questions about the individual involvement of persons with autism spectrum disabilities in formal and informal decision-making and asks for a legitimate status for care-givers as well within the framework of the new legislation. Sumanta Sen Roy’s article attempts to highlight the issues raised by parents of persons with intellectual disabilities on the issue of legal capacity. All these articles also emphasize the need to collaborate between different interest groups within the larger disability community in order to address some of the more common concerns.
Another concern in the years of the RPD drafts has been the welfare/charity orientation to disability that exists in India which locates the ‘problem’ within the individual and ignores the focus on systemic barriers that have been highlighted by the UNCRPD. The article by Asmita Bannerjee et al. concerns the tension between the ‘medical model’ and the ‘social model’ definitions in international classification schedules as well as guidelines and the way they inform the Indian legislative processes. The primary issue while drafting the law has been of definition – how can parameters be set based on the philosophy of the UNCRPD while also keeping in mind the vast population of India and the need for definitive guidelines that help in identifying disabled people. The clamour of different groups with diverse medical, congenital, and acquired conditions for inclusion came essentially from an expectation of benefits that would be made available under the new law. As diverse groups established their claim to be counted as disabled, their concerns represented further variety in terms of recognition, rights, facilities, and entitlements. The law therefore appears to have made a compromise: it includes a cross-section of voices but persists in being vague on the count of inclusiveness and in upholding a sustainable rights-based approach. Several articles in this collection draw attention to the medical frame that seems to continue to guide the bill in spirit. While the inclusion of a wider range of disabilities has given cause for celebration to certain constituencies, the fact that these disabilities become defined in terms of their medical diagnosis signifies the watering down of the social model guiding light that the UNCRPD was meant to provide. Jayna Kothari’s, Praveen G.’s as well as Amba Salelkar’s pieces discuss this aspect.
There also exists some amount of mystification over who will have the power to define and certify disability – medical professionals, bureaucratic officials, other administrative professionals – keeping in mind not only the impairment, but also the physical environment and collective social and structural barriers. Praveen G.’s article particularly emphasizes differences in the way disability is conceptualized by these different groups of professionals and social groups. However, if defining disability and the degree of impairment is only linked with access to schemes and resources, there arises the need to take into consideration other identity markers that influence access and impose barriers, for example, gender, caste, tribe, ethnic, and linguistic identities etc. (Asmita Bannerjee et al.) The present draft of the RPD Bill has ignored the fact, as pointed out by Sonpal, that each person also has multiple identity markers and these markers may aggravate the situation of barriers and discrimination for persons with disability. For example, gender, caste, class, tribe, rural-urban locale, ethnicity etc. can all lead to the exacerbation of barriers and the extent of marginalisation that a person with disability experiences.
Shampa Sengupta and Deepa Sonpal’s articles contend in different ways that large sections of the population have been left out of the consultation processes and this has affected the section of the bill that concerns social security. Deepa Sonpal criticizes the whole range of procedures required for a person to obtain the status of a certified PWD, calling them poor-unfriendly. Shampa Sengupta’s strong contention is that the need to make the bill comply with the UNCRPD has driven the consultation and legislation processes away from the grass-roots. She argues that the greater consonance the bill has with the international guidelines, the farther it grows from ground realities. Along with Sengupta’s point of the debates around the Bill being dominated by English speaking groups is the fact that most of the debates and mobilizations that led to the legislation process centred around major cities – mostly New Delhi, but also Mumbai, Bangalore, Chennai, and Kolkata, giving it an urban elitist flavour, rather than a pan Indian character. Sunder’s piece alludes to the restrictive Delhi-centric nature of many of the drafting consultations.
The politics that influenced and impacted the drafting of the Rights of Persons with Disabilities Bill 2011 was widely debated by different disability groups. Although the process of drafting any law is fraught with debates and face-offs, the draft Rights of Persons with Disabilities Bill has been particularly affected by debates surrounding almost every issue and concern. The present collection of articles has made evident the confusions that still exist in the draft bill: the coexistence of medical as well as social definitions of disability (Asmita Bannerjee et al., Jayna Kothari and Praveen G.); the tension between the progressive international spirit of the UNCRPD and the specificities of the Indian context (Shampa Sengupta, Deepa Sonpal); the difficulties in becoming certified and in accessing accommodations on a day to day basis (Sunder, Deepa Sonpal); the conceptualization of ‘legal capacity’ and the concerns that has for parents and care-giver groups (Shubhangi Vaidya, Sumanta Sen Roy); the diversity that constitutes disability as well as the practicality of having one law (Michele Friedner, Namitha Kumar, Shubhangi Vaidya). Over and above all these contentious issues that have been articulated in this collection, there is the problem of absences such as the concerns of people who are leprosy-cured. This category of impairment constituted 1/7th of the definition of disability in the PWD Act but has to date remained the least debated and discussed of disability categories. Another gaping hole is in considering mental health issues in terms of disability. What happens to the concerns of mental health users in light of the disability legislation? The revised version of the RPD Bill has completely cut down on the sections on women and children with disabilities, with a one line mention that all programmes will be made sensitive to gender and children’s needs. While this should have been sufficient to ensure that all corresponding laws that deal with the concerns of women and children becomes inclusive, the fact remains that disability being a marginalised issue, these concerns will remain as facetious and empty as always.
Finally, the issue of redress mechanisms in case of violation of the rights promised in RPD remains vague and unclear – the first version of the law had mooted two different kinds of authorities to act in case of violation but the latest version of the bill removes most of these provisions and once again makes the present RPD Bill powerless.
Dr. Nandini Ghosh is Assistant Professor of Sociology at the Institute of Development Studies Kolkata. She has a Ph. D in Social Sciences from the Tata Institute of Social Sciences in the broad area of Gender and Disability Studies. She is engaged in research on issues of marginalisation and development from a gender, disability and development perspective. She also teaches qualitative research and sociology for M Phil courses in IDSK and is a guest lecturer at the Department of Sociology, Jadavpur University in Kolkata. Website: http://www.idsk.edu.in/faculty.php?id=10
Dr. Shilpaa Anand is an Assistant Professor in the Department of English at Maulana Azad National Urdu University in Hyderabad. Her PhD was in the interdisciplinary programme of Disability Studies from the University of Illinois at Chicago. Her research interests include disability in different cultural contexts and she has published on disability history in India as well as disability in literary and cultural texts. She’s currently on the editorial board of the journal Disability Studies Quarterly.
For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.