Struggles online over the meaning of 'disability' A 'dialogic' interpretation

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

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

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

4. '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) The Bakhtin Circle '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)‏

5. 'Down syndrome (or Down's syndrome in British English) is a chromosomal disorder caused by the presence of all or part of an extra 21st chromosome' (Current revision - as of 10.38, 12th August 2008)‏ 'Down syndrome [sic] is a naturally occurring chromosomal arrangement' (18:09, 10th January 2006)‏ 'Down syndrome is a genetic condition resulting from the presence of all or part of an extra 21st chromosome' (06:14, 2nd December 2006)‏ Definitional issues on Wikipedia

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

7. Images & captions • I wish my Daddy drilled me this hard (16:17, 18th July 2006)‏ • Retard drilling holes (Revision as of 17:55, 11st November 2006)‏ • A rare case of caucasion down syndrome (2:50, 8th 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 10th Dec 2004)‏

8. 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 (12th 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)‏ Dialogue, resistance & change

9. 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.