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“Cross-Disability” in India?: On the limits of Disability as a Category and the Work of Negotiating Impairments
Abstract
This essay analyzes the stakes involved when a movement claims to be “cross-disability” in India. Activists, disabled peoples’ organizations, and non-governmental organizations devoted to disability often claim that their work and focus is “cross-disability” and that all categories of disability are included within their purview. Drawing on ethnographic fieldwork conducted with various disability organizations and disabled people in India between 2008–2017, we argue that the “cross-disability” category obscures tensions that exist between different categories of disability, while benefiting the state and civil society. Moreover, performing representation results in fragmentation as different groups lobby for their own interests. We analyze the social and political work that the categories “cross-disability” and “disability” do in everyday worlds in India and analyze new forms of disability inclusions and exclusions that have emerged in the aftermath of a 2016 disability law.
... Furthermore, the study found that though some people are aware, they find it difficult to access those services due to the tedious process formalities and procedures that de-motivate them and make them drop-out half-way. Hence, there is a need for user-friendly government guidelines and an attitudinal change among the officials towards the PwDs (Friedner et al., 2018;Mehrotra, 2004;Srivastava & Kumar, 2015). The study also finds that level of knowledge and utilisation of available services does not differ based on education. ...
The study aims to discuss whether the knowledge of programmes and services increases the utilisation of them by persons with disability. By following a quasi-experimental research design, pre- and post-training interviews were conducted with 34 participants. Post-training assessments were conducted after an interval of 6 months and again after a 4-year follow-up. The analysis showed that majority of participants had 41%–74% of disability, were involved in manual work, had knowledge on free bus pass and were getting pension. The comparison of pre- and post-training data showed significant difference in knowledge ( F = 29.051, p < 0.001) and service utilisation levels ( F = 11.999, p < 0.001). It was evident that knowledge played a vital role in utilisation of the services. Hence, government and service providers need to pay more attention on creating awareness of policies, programmes and services for the better utilisation of them.
... Attempts at cross-disability advocacy may at times promote battles over limited resources. This may be especially true if crossdisability alliances are imposed from above as a forced requirement that ignores real differences between people with different conditions (Friedner, Ghosh, & Palaniappan, 2018). When using neurodiversity as a framework to help people recognize and achieve shared aims, it is important to avoid assuming commonalities that the communities in question have not identified themselves. ...
... Attempts at cross-disability advocacy may at times promote battles over limited resources. This may be especially true if cross-disability alliances are imposed from above as a forced requirement that ignores real differences between people with different conditions (Friedner, Ghosh, & Palaniappan, 2018). When using neurodiversity as a framework to help people recognize and achieve shared aims, it is important to avoid assuming commonalities that the communities in question have not identified themselves. ...
Purpose:
We critically examine the idea of neurodiversity, or the uniqueness of all brains, as the foundation for the neurodiversity movement, which began as an autism rights movement. We explore the neurodiversity movement’s potential to support cross-disability alliances that can transform cultures.
Methods/Approach:
A neurodiverse team reviewed literature about the history of the neurodiversity movement and associated participatory research methodologies and drew from our experiences guiding programs led, to varying degrees, by neurodivergent people. We highlight two programs for autistic university students, one started by and for autistics and one developed in collaboration with autistic and non-autistic students. These programs are contrasted with a national self-help group started by and for stutterers that is inclusive of “neurotypicals.”
Findings:
Neurodiversity-aligned practices have emerged in diverse communities. Similar benefits and challenges of alliance building within versus across neurotypes were apparent in communities that had not been in close contact. Neurodiversity provides a framework that people with diverse conditions can use to identify and work together to challenge shared forms of oppression. However, people interpret the neurodiversity movement in diverse ways. By honing in on core aspects of the neurodiversity paradigm, we can foster alliances across diverse perspectives.
Implications/Values:
Becoming aware of power imbalances and working to rectify them is essential for building effective alliances across neurotypes. Sufficient space and time are needed to create healthy alliances. Participatory approaches, and approaches solely led by neurodivergent people, can begin to address concerns about power and representation within the neurodiversity movement while shifting public understanding.
Over the last few years, inclusive education provisions in India have expanded significantly, with a particular focus on ensuring that disabled children are able to access the same quality of education as their normate counterparts. However, despite policy support for the creation of more inclusive educational environments, the embodied experiences of disabled children are often not centered in classrooms. This paper therefore asks: how do explicitly inclusive educational projects come to exclude disabled children? The paper provides a critical analysis of how discourses around childhood and disability come to be taken up by the modern schooling system in a manner that reifies ableist hierarchies and often does not center the needs of disabled children. This paper draws on insights from ethnographic fieldwork to discuss how the disabled child subject is produced and disciplined within the modern school system in the National Capital Region of India. It highlights how disabled children, their caregivers, and educators in special and inclusive schools perform and push back on expectations of embodied otherness in and beyond classroom spaces. To do so, it demonstrates that being recognized as disabled is contingent on documentary proof. However, disability is experienced both as a label and an identity category.
The present chapter contends that the models approach to studying disability, when used in India, has little 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 in the Indian academic context requires critical examination. What is known as a medical model framing of disability cannot as conveniently describe 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 treatment and corporeality are different in different ways from those of biomedicine. Additionally, the models approach intrinsically affirms a progressive historiography; 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.
This article o ers a detailed ethnographic account of how people appropriate available space in compartments for disabled people in the Mumbai suburban trains, make it their own and monitor it, in the context of a succession of recent spatial changes. These compartments have increased in size over the years, and subsequently, the body of travellers has become more diverse. Passengers produce hierarchies based on need, physical di erences, age di erences and physical appearance, determining who can enter the compartments and who can’t, who can sit and who should stand, and where they should sit/stand. These hierarchies are mediated, but not dominated, by medical and disability certi cates which are, in addition to a valid ticket, the documents that entitle people to travel in the handicapped compartments. Hierarchies are in uenced by sexism, classism and audism and partially overlap but also are competing, such as in the case of deaf people who argue for the right to occupy seats and at the same time struggle with how to balance this quest with the need to act morally towards fellow travellers who seemingly suffer.
In this paper we aim to explore the realm of impairment in terms of its politicization under transnational claims for justice. The realm of disability rights and justice has been a central theme in disability analytical inquiry and by disability movement actors engaged in struggles of disability affirmative politics. Within this frame, there has been an increasing amount of disability scholarship and activism at the transnational sphere. In fact, since the ratification of the UNCRPD (2006) greater transnational alliances have become a central feature to advancing disability affirmative claims for rights and justice. While welcomed, we argue that within the transnational realm, the focus on disability alone critically marginalizes those groups engaging in repertories of action within the logos of impairment as transnational claims for disability justice tend to naturalise impairment and negate the production of impairment under global structural processes of violence. To address this issue, we suggest that the growing scholarship on transnational theorizing and activism within disability needs to respond to these claims for justice and rights. To conclude we argue that transnational theorizing and praxis is in fact, a double move – an affirmative politics of disability rights and justice and a transformative politics of impairment.
Keywords: impairment, justice, rights, disability politics, majority world, justice, North–South power relations, Southern epistemologies
PurposeThe aim of this chapter is to explore the marginal dimensions of disability, gender and caste in the context of Indian economy in recent globalizing times.
ApproachUsing an intersectional approach it is argued that caste, gender and disability implicate and impact the opportunities available to persons as these account for the marginalities in a developing economy. The chapter is based on ethnographic and empirical data and it critically analyses the trends.
FindingsThis study shows how social and cultural frames on one hand and the nature of diverse occupational pursuits on the other set the context within which a person with dalit ¹ status, with impairments and also a woman is likely to suffer the most. Social contexts are diverse and situation of persons within different groups varies. The chapter also examines state and NGO initiatives in this regard and suggests the limitations and possibilities of dalits with disabilities having access to resources within neo-liberal economy.
OriginalityThe findings expand the scope of disability research having policy implications.
This article delves into questions of neoliberal disorientations experienced by disabled people in the context of a participatory development self-help group project from the World Bank in south India. I explore ways in which neoliberal development regimes produce exclusionary forms of inclusion by producing subjects who are ‘able-disabled’. I ethnographically examine ‘who gets counted’ and ‘what gets counted’ within the neoliberal governance framework, and what remains outside. Deconstructing participatory development approaches from a critical disability perspective, the article sheds light on processes of inclusion through exclusion in the neoliberal framework of governance. It highlights what is at stake for disability futures in the context of austerity in the Global South.
This paper argues that disability is gendered, culturally constituted and socially negotiated. It explores the nature and form of disability afflicting the individual and social life of women in rural Haryana, in terms of both physical and mental parameters. It describes the community and the family strategies for supporting disabled women in negotiating family, work, economy and society. It also highlights the social effects of physical disability on various stages of their life cycle. Disability remains an obstruction in attaining the full potential of an individual. Each community has its characteristic way of understanding disability and coping with its disabled population. Disability locates the individual in a compromised position not only for biological reasons, but also as a consequence of a complex combination of such non-biological factors as gender, caste, class, neighbourhood relations, and the nature of kinship and family structure. This paper explores the conceptual and empirical implications of the proposition that 'disability is culturally constructed and socially negotiated'. If disability creates obstacles for individuals in discharging their social responsibilities, there are inbuilt cultural mechanisms and social networks available to them as coping strategies within the family, kinship, caste and community. Voluntary agencies and the state machinery, through various em-powerment initiatives, are making consistent efforts to minimise, if not eliminate, the social hindrances and constraints that result from physical disability. 1 Since a large number of the disabled lives in rural areas, the absence of accurate information on the magnitude of the problem has hampered planning of realistic policies and services for them. In urban areas, the disabled are recognised as a social category for their special needs. There are attempts to integrate them into the social mainstream through institutions like special schools and training centres. The situ-ation is different in rural areas. Here the disabled do not constitute a socially recognised group; they often continue to function as normal members of society. In order to understand disability in a rural area, it is necessary to recognise its social organisation of production, cultural values and the structure of gender relations.
Civil society groups today are honored and relied on by governments, as well as tightly regulated and scrutinized for challenging state policies and agencies. In contemporary India, political dynamics of collaboration and confrontation between state and nonstate actors increasingly unfold in legal-social fields, taking “technomoral” forms. Mixing technocratic languages of law and policy with moral pronouncements, these actors assert themselves as virtuous agents, marking their political legitimacy as keepers of the public interest. Using ethnographic research with Indian NGOs, social movements, and a political party, we show that as civil society groups interact with state bodies, they redefine institutional boundaries and claim moral authority over public stewardship. Technomoral strategies are neither depoliticized nor antipolitical, but constitute a righteous and rightful form of politics. [NGOs, state, India, morality, activist politics, neoliberalism, law]
Commissions of inquiry are unique tools of modern governance that represent the people, but in a manner quite unlike parliaments and other forms of elected political representation. Using as its example the 2007 Misra Report, this paper reveals how, in the production of a commission report, scores of non-state actors-stakeholders from a wide range of social strata-are enlisted to produce the policies that will then redound upon those very stakeholders. In thus consulting the people and eliciting their speech, commissions serve to publicly enact, in a controlled setting, the deliberative ideal of democracy that is otherwise absent in India. In this particular instance, the problematic status of Dalits is subsumed under the normative religious identity of the post-colonial Indian nation, a conclusion whose emergence through reasoned debate is publicly enacted in the form of the commission.
DIVRed Tape presents a major new theory of the state developed by the renowned anthropologist Akhil Gupta. Seeking to understand the chronic and widespread poverty in India, the world's fourth largest economy, Gupta conceives of the relation between the state in India and the poor as one of structural violence. Every year this violence kills between two and three million people, especially women and girls, and lower-caste and indigenous peoples. Yet India's poor are not disenfranchised; they actively participate in the democratic project. Nor is the state indifferent to the plight of the poor; it sponsors many poverty amelioration programs.Gupta conducted ethnographic research among officials charged with coordinating development programs in rural Uttar Pradesh. Drawing on that research, he offers insightful analyses of corruption; the significance of writing and written records; and governmentality, or the expansion of bureaucracies. Those analyses underlie his argument that care is arbitrary in its consequences, and that arbitrariness is systematically produced by the very mechanisms that are meant to ameliorate social suffering. What must be explained is not only why government programs aimed at providing nutrition, employment, housing, healthcare, and education to poor people do not succeed in their objectives, but also why, when they do succeed, they do so unevenly and erratically./div
I have long been interested in classifications of people, in how they affect the people classified, and how the affects on the people in turn change the classifications. We think of many kinds of people as objects of scientific inquiry. Sometimes to control them, as prostitutes, sometimes to help them, as potential suicides. Sometimes to organise and help, but at the same time keep ourselves safe, as the poor or the homeless. Sometimes to change them for their own good and the good of the public, as the obese. Sometimes just to admire, to understand, to encourage and perhaps even to emulate, as (sometimes) geniuses. We think of these kinds of people as definite classes defined by definite properties. As we get to know more about these properties, we will be able to control, help, change, or emulate them better. But it's not quite like that. They are moving targets because our investigations interact with them, and change them. And since they are changed, they are not quite the same kind of people as before. The target has moved. I call this the 'looping effect'. Sometimes, our sciences create kinds of people that in a certain sense did not exist before. I call this 'making up people'. What sciences? The ones I shall call the human sciences, which, thus understood, include many social sciences, psychology, psychiatry and, speaking loosely, a good deal of clinical medicine. I am only pointing, for not only is my definition vague, but specific sciences should never be defined except for administrative and educational purposes. Living sciences are always crossing borders and borrowing from each other. The engines used in these sciences are engines of discovery but also engines for making up people. Statistical analysis of classes of people is a fundamental engine. We constantly try to medicalise: doctors tried to medicalise suicide as early as the 1830s. The brains of suicides were dissected to find the hidden cause. More generally, we try to biologise, to recognise a biological foundation for the problems that beset a class of people. More recently, we have hoped to geneticise as much as possible. Thus obesity, once regarded as a problem of incontinence, or weakness of the will, becomes the province of medicine, then of biology, and at present we search for inherited genetic tendencies. A similar story can be told in the search for the criminal personality.
Purpose:
To discuss Universal Design (UD) as an interdisciplinary topic with relevance for rehabilitation professions and planning and building professions. Significant for this topic is to discuss to what model of disability UD strategies correlates. The paper argues that the UN Convention on the Rights for Persons with Disabilities (CRPD) pre-supposes a relational model of disability.
Method:
This is a theoretical paper on the understanding of UD and the significance of UD as a subject of interdisciplinary research and teaching. The paper is based on literature and focuses on how to understand UD in interdisciplinary contexts. Both impairment effects and disabling barriers are important for understanding UD. Rehabilitation professions together with user-representatives provide knowledge on impairments as an aspect of human diversity; planning professionals provide knowledge on architecture and spatial planning. As an emerging field of knowledge, UD involves different knowledge; however, these differences may also lead to difficulties in communication.
Results:
Both theoretically and practically UD must correspond to an understanding of disability as relational, involving person, interaction and barriers. Implementing UD strategies ought to be linked to a concept of person that clearly includes impairments as a dimension of human plurality.
Conclusion:
In conclusion, the paper suggests that a common knowledge platform can prove productive for interdisciplinary work with UD. Implications for Rehabilitation Universal Design is a strategy to improve equal access for people with disabilities. A concept of the person and of disability is of importance for implementing Universal Design strategies. The interdisciplinary involvement in Universal Design must involve rehabilitation professions to attend to the individual dimension in Universal Design.
Whether in characterizing Catherine MacKinnon's theory of gender as itself pornographic or in identifying liberalism as unable to make good on its promises, this text pursues a central question: how does a sense of woundedness become the basis for a sense of identity? Brown argues that efforts to outlaw hate speech and pornography powerfully legitimize the state: such apparently well-intentioned attempts harm victims further by portraying them as so helpless as to be in continuing need of governmental protection. "Whether one is dealing with the state, the Mafia, parents, pimps, police, or husbands," writes Brown, "the heavy price of institutionalized protection is always a measure of dependence and agreement to abide by the protector's rules." True democracy, she insists, requires sharing power, not regulation by it; freedom, not protection. Refusing any facile identification with one political position or another, Brown applies her argument to a panoply of topics, from the basis of litigiousness in political life to the appearance on the academic Left of themes of revenge and a thwarted will to power. These and other provocations in contemporary political thought and political li
Representation is more than a matter of elections and parties. This book offers a radical new perspective on the subject. Representation, it argues, is all around us, a dynamic practise across societies rather than simply a fixed feature of government. At the heart of the argument is the straightforward but versatile notion of the representative claim. People claim to speak or stand for others in multiple, shifting, and surprising patterns. At the same time they offer images of their constituents and audiences as artists paint portraits. Who can speak for and about us in this volatile world of representations? Which representative claims can have democratic legitimacy? The Representative Claim is set to transform our core assumptions about what representation is and can be. At a time when political representation is widely believed to be in crisis, the book provides a timely and critical corrective to conventional wisdom on the present and potential future of representative democracy.
In this paper we review the characteristics and effectiveness of a program aimed at preventing homozygous beta-thalassemia in the Sardinian population. The target population for screening were couples at marriage, conception or early pregnancy. Awareness of the problem and the involvement of the population were achieved via the mass media or by personal approaches through lectures or discussions. Parents' Associations were consulted and have made themselves available to prospective couples in several critical areas. Education on thalassemias was introduced into the school curriculum. Counseling was based on private interviews at which the several options available were discussed with the individual carrier or the couples. Prenatal diagnosis was chosen by the large majority of couples counseled. The introduction of 1st trimester diagnosis resulted in a striking increase of the acceptance rate from 93.2 to 99.1%. Prenatal diagnosis was carried out initially by fetal blood analysis and thereafter by trophoblast or amniocyte DNA analysis. Direct detection of the mutation by oligonucleotide hybridization on agarose gel separated DNA fragments or by dot-blot analysis with allelic specific oligonucleotide probes on enzymatically amplified DNA was used. This program resulted in a decline in thalassemia major births of 90%. The reasons for residual cases were mostly lack of information and, less frequently, misdiagnoses or refusal of fetal diagnosis.
Exploring Disability. Cambridge and Malden
- Colin Barnes
- Geof Mercer
Barnes, Colin and Geof Mercer. 2010. Exploring Disability. Cambridge and Malden: Polity Press.
Dis)embodied Form: Issues of Disabled Women
- Anita Ghai
Ghai, Anita. 2003. (Dis)embodied Form: Issues of Disabled Women. Har-Anand Press: New Delhi.
Impaired Bodies, Gendered Lives: Everyday Realities of Disabled Women
- Nandini Ghosh
Ghosh, Nandini. 2016. Impaired Bodies, Gendered Lives: Everyday Realities of Disabled Women. Delhi:
Primus Books.
Campus Calling: DU to Reserve Seats for Acid Attack Survivors, Students with Thalassemia
- Heena Kausar
Kausar, Heena. 2017. "Campus Calling: DU to Reserve Seats for Acid Attack Survivors, Students
with Thalassemia." Hindustantimes, May 25. Retrieved April 4, 2018 (http://
www.hindustantimes.com/delhi-news/campus-calling-du-to-reserve-seats-for-acid-attacksurvivors-students-with-thalassemia/story-wd8KjOABKsN8F3at8KlHSO.html).
The Analytics of Disability: Bodies, Documents, and the Order of the State
- Rijul Kochhar
Kochhar, Rijul. 2013. "The Analytics of Disability: Bodies, Documents, and the Order of the State."
MA thesis, Department of Sociology, Delhi School of Economics, University of Delhi.
A Resource Book on Disability Studies in India
- Nilika Mehrotra
Mehrotra, Nilika. 2016. "A Resource Book on Disability Studies in India." Centre for the Study of
Social Systems, School of Social Sciences, Jawaharlal Nehru University. Retrieved April 4, 2018 (
http://www.jnu.ac.in/Faculty/nilika/A%20READER%20ON%20DISABILITY%20STUDIES%20IN%
Acid Attack Survivors, Thalassemia Students to Have Reserved Seats in DU
- Jugal R Purohit
Purohit, Jugal R. 2017. "Acid Attack Survivors, Thalassemia Students to Have Reserved Seats in
DU." India Today, May 25. Retrieved April 4, 2018 (http://indiatoday.intoday.in/education/story/
du-seats-reserved/1/962690.html).
Inner Marginalities and Sub-Group Politicization within the Disability Movement
- Deepa Palaniappan
Palaniappan, Deepa. 2016. "Inner Marginalities and Sub-Group Politicization within the Disability
Movement." Café Dissensus. Retrieved February 26, 2018 (https://cafedissensus.com/2016/08/14/
inner-marginalities-and-sub-group-politicization-within-the-disability-movement/).
- Justice Rights
- Impairment
Rights, Justice and Impairment." Disability Studies Quarterly 34(2). Retrieved February 26, 2018 (
http://dsq-sds.org/article/view/4249).
77) define "technomoral" as the complex, strategic integration of technical and moral vocabularies into political tactics
- Erica Bornstein
- Aradhana Sharma
Erica Bornstein and Aradhana Sharma (2016:77) define "technomoral" as the complex,
strategic integration of technical and moral vocabularies into political tactics.