Struggles online over the meaning of disability A

Struggles online over the meaning of 'disability' A 'dialogic' interpretation nicholascimini@gmail. com Disability Studies Conference – Lancaster University 3 rd September 2008

Paper outline • • Dialogue online & the 'punk ethic' The Bakhtin Circle Representations of Down's syndrome Summary

The 'punk ethic' online These websites reflect & refract a 'multiplicity of consciousnesses' and - in the process – they subvert tradition forms of knowledge construction

The Bakhtin Circle 'Countless ideological threads running through all areas of social intercourse register effect in the word. It stands to reason then, that the word is the most sensitive index of social changes. . . The word has the capacity to register all the transitory, delicate, momentary phases of social change'. Voloshinov (1973, p. 19, italics added) 'Utterances and their types, that is, speech genres, are the drive belts from the history of society to the history of language’ Bakhtin (1981, p. 65)

Definitional issues on Wikipedia 'Down syndrome (or Down's syndrome in British English) is a chromosomal disorder caused by the presence of all or part of an extra 21 st chromosome' (Current revision - as of 10. 38, 12 th August 2008) 'Down syndrome [sic] is a naturally occurring chromosomal arrangement' (18: 09, 10 th January 2006) 'Down syndrome is a genetic condition resulting from the presence of all or part of an extra 21 st chromosome' (06: 14, 2 nd December 2006)

Subverting 'clinical' expertise Children with Down syndrome [sic] are at an immediate disadvantage compared with children who do not have Down syndrome. Many of the common physical features of Down syndrome also appear in people with a standard set of chromosomes – Revision initiated on 22: 25, 1 st September 2005 (italics added), wording still used

Images & captions • • I wish my Daddy drilled me this hard (16: 17, 18 th July 2006) Retard drilling holes (Revision as of 17: 55, 11 st November 2006) A rare case of caucasion down syndrome (2: 50, 8 th February 2008) I'm not saying the picture on the article is wrong, I just think maybe it should be more front-on, as it were, showing the facial differences of a Down's person (User Selphie 10 th Dec 2004)

Dialogue, resistance & change I think the photo is great and very much adds to the article. It shows the distinct facial features and the short stubby fingers, but in a dynamic shot (also illustrating the capacity to develop interests and skills) rather than a "here is a pathology specimen" shot. Which is as it should be, since people with DS are people, not pathology specimens. In other words the photo shows the stigmata without stigmatizing. Anon (12 th May 2008) italics added Glad my sons photograph (prominent top right) has survived many attacks over the years by both vandals and the snooty brigade - my sons picture wielding an electric screwdriver says a thousand positive things that the article doesn't about having Down's syndrome and it has now been there so long that nobody dares to delete it, its sacrosanct. Excalibur (e-interview 2007)

Summary • Struggles over the meaning of disability can be considered a virtual echo or 'index' of struggles being fought in the real world. • We cannot 'click to victory' in these struggles. • Revised and supplemented, Bakhtin's notion of dialogism provides powerful tools - focusing our attention on a 'multiplicity of consciousnesses', the processes of interaction between social voices, and the often exclusionary methods by which one voice gains closure over others – as well as, crucially, the two-way processes of dialogue and resistance to closure. • Out of the many competing perspectives on Down's syndrome, there is the potential for meaningful agreement.