Literature DB >> 3469765

'The stumbling disease': a case study of stigma among Azorean-Portuguese.

M I Boutté.   

Abstract

There exists among Azorean-Portuguese a biological malady that is inherited. First recognized by biomedicine in 1972 as a distinct disease entity, it has been in existence in the United States and the Azores Islands since at least the mid-1800s. The malady is generally known as the 'stumbling disease' among the Azorean-Portuguese; the current biomedical literature refer to it as Machado-Joseph disease. Historically an aura of stigma has surrounded affected individuals, their families, and primary ethnic group in which the malady is currently found. Drawing heavily on the work of Erving Goffman Stigma: Notes on the Management of Spoiled Identity. Prentice-Hall, Englewood Cliffs, N.J., 1963) and labelling theory, this paper explores the nature of this stigma. The cultural contexts of a small, face-to-face, homogeneous island setting is contrasted with that of the heterogeneous, anonymous setting of the United States to illuminate various aspects of the stigma configuration. The cultural context has important implications for stigma definitions, modes of social control, and management strategies of the stigmatized.

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Year:  1987        PMID: 3469765     DOI: 10.1016/0277-9536(87)90048-7

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  6 in total

1.  Nuance, complexity, and context: qualitative methods in genetic counseling research.

Authors:  Diane Beeson
Journal:  J Genet Couns       Date:  1997-03       Impact factor: 2.537

2.  Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease.

Authors:  Álvaro Mendes; Milena Paneque; Angus Clarke; Jorge Sequeiros
Journal:  Eur J Hum Genet       Date:  2018-12-20       Impact factor: 4.246

Review 3.  Disease avoidance as a functional basis for stigmatization.

Authors:  Megan Oaten; Richard J Stevenson; Trevor I Case
Journal:  Philos Trans R Soc Lond B Biol Sci       Date:  2011-12-12       Impact factor: 6.237

4.  'You don't get told anything, they don't do anything and nothing changes'. Medicine as a resource and constraint in progressive ataxia.

Authors:  Gavin Daker-White; Helen Kingston; Katherine Payne; Julie Greenfield; John Ealing; Caroline Sanders
Journal:  Health Expect       Date:  2012-10-24       Impact factor: 3.377

5.  Cerebellar ataxia and intrathecal baclofen therapy: Focus on patients´ experiences.

Authors:  Shala Ghaderi Berntsson; Anne-Marie Landtblom; Gullvi Flensner
Journal:  PLoS One       Date:  2017-06-27       Impact factor: 3.240

6.  Trouble with ataxia: A longitudinal qualitative study of the diagnosis and medical management of a group of rare, progressive neurological conditions.

Authors:  Gavin Daker-White; John Ealing; Julie Greenfield; Helen Kingston; Caroline Sanders; Katherine Payne
Journal:  SAGE Open Med       Date:  2013-09-28
  6 in total

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