Time: Saturday, August 24th, 13:00-14:30
Place: Gullteigur B
Chair: Mårten Söder
Paper Session 20: Understanding disability II
'News From Nowhere' - Insights from a qualitative case study
of the social situation of people with Huntingdon's Disease.
Name: Colin Goble
Title: Mr
Organisation: University of Greenwich
Address: School of Health & Social Care, Avery Hill Campus, Eltham, London.
City: London
Country: UK
E-mail: C.Goble@gre.ac.uk
Tel: 02083318084
| This paper is based on a qualitative case study involving a participant with both personal and professional experience of Huntingdon's Disease. It was undertaken to provide empirical background for a chapter I am contributing to a volume on 'Controversial Issues in a Disabling Society', edited by Professor John Swain (University of Northumbria) and Dr Sally French (King Alfred's College, Winchester). Although only involving a single participant, and therefore limited of generalisability, the case study offers a number of insights into the situation of people with Huntingdon's Disease particularly, genetically related impairment, and degenerative conditions generally, in the UK. For instance, the 'therapeutic nihilism' attached to Huntingdon's Disease which appears to result in a lack of motivation on the part of health and social care professionals and services to provide support for individuals and families. People appear to be virtually 'abandoned', particularly in the early stages when manifestations are largely behavioral. Support only comes when physical impairment becomes manifest. This raises interesting question s, such as; is the difference in response related to issues of visibility of impairment? And, is 'abandonment' of people a manifestation of negative responses of medicine to the 'incurable'? Other areas and questions covered include - is genetically related impairment the ultimate in bio-reductionist, individualised and 'tragic' impairment? How does the 'management of decline' stand in relation to the obsession of UK services with 'independence'? These and a number of other areas will be raised for discussion and as possible directions for future research. |
Understanding disability. A genealogy of the social practices of
corporeal differences in Quebec society.
Name: Normand Boucher
Title: Researcher
Organisation: CIRRIS/Laval University
Postal Address: 525, Boul. Hamel Est
City: Quebec
Country: Canada G1M 2S8
E-mail: damongt@globetrotter.net
Tel: 1 (418) 529-4151
| This paper draws on data from author's Ph.D research which show the socio-historical transformation of social practices of disabled people in Quebec society. Focusing on institutional disability categories transformation, we pointed out underlying social processes that gave respectively birth to the infirm, handicapped and handicapped person's model of regulation by political power. Those are rooted in the development and transformation of western societies notably around the emergence of capitalism. Our analysis shows the existence of two major historical points: 1) political rationality based on discipline and normalisation of body social practices and regulation of life conditions of population as a whole; 2) rising up of disabled people's movement in opposition to this political rationality. This dynamic has been marked by some specific processes such as the historical distinction between people who were able or not to work; constitution of rehabilitation field as an expert system; institutionalisation of disability movement as a social minority. Overall, the process has led to the constitution of a conditional autonomy space shaping around particularism and universalism both as cornerstone of the relationship between disabled people and society. The author has pursued his research at the Centre for Disability Studies of University of Leeds in 2001/2002. |
Life-world, rehabilitation and the lived body
Name: Inger Berndtsson
Title: Ph.D.
Organisation: Göteborg University, Department of Education
Postal Address: Box 300
City: SE 405 30 Göteborg
Country: Sweden
E-mail: Inger.Berndtsson@ped.gu.se
Tel: +46 (0)31 773 2497
| Becoming visually impaired results in a lot of changes in a person's life. It is important to understand those changes but also to understand what factors make a person become active in the world again. In an ongoing project rehabilitation for persons with visual impairments is studied to find out how it can be described from the persons' own point or view, and how it fits into their daily lives. In my presentation I will focus visually impaired persons learning to handle their changed life situation, both in the context of rehabilitation but also in their private life. How is it possible to listen to the voice of the life-world in the context of rehabilitation? The concept of the lived body is used as a ground for interpreting persons' learning processes and will be exemplified through the example of learning to use the white cane. Further, habits and intentionality are crucial aspects in these processes. The social aspects of rehabilitation and learning have also been very obvious in the study. The research is grounded in phenomenological concepts of the life-world. Data have been collected by observations, interviews regarding learning processes and life-story interviews. |
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