EASA, 2010: EASA2010: Crisis and imagination

Maynooth, 24/08/2010 – 27/08/2010

(W101)

Politics of disability and experience

Location Science PCT
Date and Start Time 25 Aug, 2010 at 11:30

Convenors

Benedicte Ingstad (University of Oslo, Norway) email
Patrick Devlieger (University of Leuven) email
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Long Abstract

This panel seeks to explore the multifaceted ways in which politics of disability influences and shapes experiences and identities in various localities, both in the North and the South. Starting in Scandinavia in the 1960s, and further developed during the 1980s with the International Year of Disabled (1981) and the Decade of Disabled Persons (1983-1992), the disability rights discourse is now widely recognised across the world. However, access to these disability rights is unequally distributed, not only between the North and the South, but also within regions and states. This panel thus invites papers addressing a broad range of questions related to the interconnectedness of disability politics and experiences. How are these relations shaped differently, due to historical, cultural, socio-economic and political situations? In which ways do people express and cope with experiences of otherness and difference? How are the politics of disability been manifested in government programs in political organizations?

Experiences of disability are closely connected not only to politics, but also to the local manifestations of sociality and culture. Disability challenges cultural perceptions of normality, personhood, genealogy and relatedness, and we invite papers discussing the complexities of these connections.

This workshop is closed to new paper proposals.

Papers

"They call them lababa or obange - stupid"

Author: Gitte Beckmann (University of Zurich)  email
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Long Abstract

(Report from a PhD field research in Uganda)

Deaf are seen as not being able to understand instructions in spoken language. They are named lababa or obange - stupid. How are they dealt with? How do they perceive the society they are part of? This paper is about Deaf in a post-war situation in Acholiland, Northern Uganda. In a first step the report will present the setting, the social networks and interactions Deaf are participating and involved in, including families, communities, schools and organizations. In a second step it will take a phenomenological approach with a focus on the individual's perspective. What kinds of socio-technical skills did and do Deaf in Acholiland need and develop to cope with their everyday life and to make themselves understood in a time of accelerated change?

Experiences of disability and institutional care in rural South Africa

Author: Camilla Hansen (Oslo and Akershus University College of applied science.)  email
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Long Abstract

The paper will investigate experience of disability in conjunction with the private and public moral boundaries of care in rural South Africa. With ethnography from Eastern Cape (Transkei) two central local concepts will be investigated.

1. The first concept, "community child", can be analysed as an alternative local approach where practices of care are embedded in perceptions of relatedness, personhood, reciprocity and responsibility.

2. The second concept, "discrimination", is embedded in a political and social practice which resist values which maintains care as private.

The paper make use of Foucault's concept "biopower" to illustrate the overlapping emergence of bio-bureaucratic institutions, e.g. welfare homes, rehabilitation homes (modernist form of homes) and its discourse which manifest a unprecedented regime of authority and care as private. The concept "biopower" will be discussed in conjunction with the content of mainstreaming an understanding of disability into the broader South African society. The paper will discuss how this transformation is also about making care into concern for the public. The paper draw on the philosopher Joan Tronto's political argument of addressing otherness and paternalism - an argument which draws attention to the importance of moving care from being a matter between care-givers and care-receivers only, but rather a matter for the community. The ethnographic material discusses how local disabled people organizations in Eastern Cape are actively involved in these processes of transformation. Among them changing institutions to become more public and further communicating closely with local communities which has less access to the knowlegde these institutions contains.

How religious aspects influence the Jewish disability's conceptualization

Author: Carolina Valdebenito (Katholieke Universiteit Leuven)  email
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Long Abstract

This paper is based on the preliminary results obtained through a doctoral research which purpose is to investigate the Jewish parents' conceptualization of their own children with "special needs". The fieldwork site selected is Antwerp, where there exists a special institution for disabled Jewish people who are enrolled from different places around the world. The theoretical assumptions and hypotheses are based within the theoretical constructivist framework, which indicates that the words and concepts allow us to explain and to interpret reality. Concepts make it possible to organize the complexity of reality and make it more intelligible. Likewise, disability will be studied as a conceptualization or categorization. Researchers specialized in disability studies, have described the evolution of concepts such as handicap, disability, impairment and challenges. However, regardless of the concept used, there is always some social impact within a particular social group. Some of these social responses are: discrimination, racism, indifference, etc. Whatever the reaction, it always reflects something deeper, something which arises from the culture's traditions. One of the arguments in this manuscript is that the culture is very important in determining the social responses to different phenomena and it is assumed that religion is the most important cultural aspect present in different social groups and the basis of the dominant social construction(s). Thus, an argument in this paper is that despite the Jewish people not being homogenous in religious observation, nonetheless, they categorize disability in the light of religion which remains central to their culture.

Aspects of disability

Author: Patrycja Polczyk (University of Lower Silesia)  email
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Long Abstract

My work presents short introduction to definitions of disability, followed by in-depth personal reflections based on research from Social Animators for PWD project and personal observations of disabled author, who is also an anthropologist. Whole work also discuss with theory presented in works of Mercer and Barnes, Shapiro, Ingstad, Parsons etc. I would also like to present pictures of places from local community, which I wanted to change during project mentioned above. Last point would be short comparision of how disabled percieve and how are percieved in Poland and other, western countries.

Does the present disability discourse and politics produce the social stigma? Analizing a paradox, through an ethnographic fieldwork in Rome, Italy

Author: Stefano Onnis (University "Sapienza", Roma)  email
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Long Abstract

Thirty years ago and more, a very important law in Italy - repealing special classes - ratified the social inclusion rights for people with mental disability. Today, the most evident outcome is a social and cultural change in common people language (no more "handicap" but "different ability") or the disability presence in the media (prime time on TV).

But it's only an outward change appearance: disability politics are substantially ambiguous and unable to propose a cultural social change.

After several years of field work in Rome, Italy, the research seeks to point out this ambiguity and focuses on the self-representation of the different social protagonists, like a mother, a social worker, the social services, and their different points of view.

The attempt is to highlight a paradox: the present disability discourse and politics has produced the maintenance of the social stigma.

Emancipation processes in deaf communities: how the visual exchange of knowledge on more fortunate life circumstances can compensate for local limiting structures

Author: Goedele De Clerck (Ghent University)  email
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Long Abstract

In a literature review of studies on identity dynamics in deaf communities in northwestern Europe a three-stages model of emancipation comes to the fore. These trends are intimately tied to changes in policy and a broader use of sign language in realms of family, education, employment and larger society. An exploratory case study of identity dynamics in Flemish deaf role models, the model of emancipation, and the situation of the Flemish case into this model provide insight into the phenomenon of deaf people's awakening: the politicization of deaf identities that is currently going on in western deaf communities. It also throws a light on the role of global-local interaction and informal, transnational deaf networks of socialization and identification in deaf people's identity dynamics and agency. The visual exchange of emancipatory knowledge can be perceived as a deaf way of education that compensates for oppressive political, cultural, social and educational structures.

The recognition of disability: toward political programs in Spain since 1982

Author: Joaquín Guerrero (Catholic University, Murcia)  email
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Long Abstract

The purpose of this paper is describe and analyze politics of disability that is closely connected with the social perceptions of normality and personal capacity, that have been developed in Spain since 1982, when the government proposed the Act of Social Integration of the Disabled Persons and then adopted the International System of the Disability Classification. This paper will highlight the changes that have taken the concept of disability in Spain from the system of categorization: deficiency, diagnosis, etc until the recent Act on the Promotion of Personal Autonomy and Care for people living in dependence. This law regulates the basic conditions of promotion of personal autonomy and care for people in situations of dependency. This recent recognition politic of disabilities represented a foundation for a new understanding of people with disabilities and their rights. In Spain the regions and autonomous communities are making an unequal distribution of resources and assistance causing significant inequalities.

Law 220/2000: disability rights and the production of modernity in contemporary Lebanon

Author: Julie Hartley  email
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Long Abstract

The passing of Law 220 in 2000, which secures the rights of disabled people, is hailed as a major victory amongst disability rights NGOs, in particular the LPHU (Lebanese Physical Handicapped Union). This paper, which is based on ethnographic fieldwork carried out in Lebanon from 2004-2005, suggests that the passing of Law 220, constitutes a symbolic moment when the respective strategies of the LPHU and the Lebanese Government converged: for the LPHU, the law invoked a modern state in which disability rights were recognised, while at the same time, it made the Lebanese Government appear 'modern'. However, the law, which is based on international disability rights doctrine, has yet to be activated. This paper suggests that in the Lebanese context, the discourse of disability rights becomes an aspirational rhetoric and a political tool for both the state and disability groups.

Poverty, disability and access to health and rehabilitation services in the People's Republic of China

Author: Gry Sagli (University of Oslo)  email
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Long Abstract

This paper discusses what has been termed 'the vicious circle' of poverty and disability as it manifests itself in rural areas in the People's Republic of China (PRC). Based on ethnographic fieldwork conducted among persons with disabilities in Inner Mongolia Autonomous Region, I will present material concerning access to health and rehabilitation services. Lack of access to adequate health care and impoverishment due to health care expenses are currently perceived as crucial issues causing poverty in rural PRC. In the presentation I shall focus on the new health insurance and discuss this new scheme both in terms of people's experiences and local political implementation. My main purpose is to investigate how access to health care and rehabilitation services for persons with disabilities is secured within the new health insurance system and, moreover, to analyse the potentialities and challenges within these schemes, both in terms of poverty reduction and social inclusion.

Medicine, bureaucracy and culture: the construction of disability and disability pensioners in Iceland

Author: James Rice (University of Iceland)  email
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Long Abstract

This paper examines the interconnections between the disability support services, the medical-bureaucratic infrastructure and cultural perceptions of disability in Iceland.

During the course of a previous multi-year ethnographic research project in Reykjavik, Iceland, it was learned that disability pensioners were often associated with high levels of suspicion and stigmatization. The typical explanations for these views pointed to Icelandic history and 'culture.' Yet the category 'disability pensioner' is predominantly a product of bureaucratic and medical forms of knowledge and power, a good deal of which is imported from abroad. As such, Icelandic understandings of disability appear to be the product of complex interconnections between local culture, history, and international forms of knowledge and governance.

This paper presents some findings of a post-doctoral project in progress which seeks to, among other things, explore these interconnections and the production of disabled subjectivities in Iceland though interviews with a wide range of stakeholders.

This workshop is closed to new paper proposals.