Boutté M I
Soc Sci Med. 1987;24(3):209-17. doi: 10.1016/0277-9536(87)90048-7.
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.
亚速尔群岛葡萄牙人中存在一种遗传性的生物疾病。1972年被生物医学首次确认为一种独特的疾病实体，至少从19世纪中叶起就在美国和亚速尔群岛存在。这种疾病在亚速尔群岛葡萄牙人中通常被称为“蹒跚病”；当前的生物医学文献将其称为马查多-约瑟夫病。历史上，受影响的个体、他们的家庭以及目前发现这种疾病的主要族群都笼罩着一种耻辱的氛围。本文大量借鉴欧文·戈夫曼的《耻辱：关于受损身份管理的笔记》（普伦蒂斯-霍尔出版社，新泽西州恩格尔伍德克利夫斯，1963年）以及标签理论的研究成果，探讨这种耻辱的本质。将一个小型、面对面、同质化的岛屿环境的文化背景与美国异质化、匿名化的环境进行对比，以阐明耻辱形态的各个方面。文化背景对耻辱的定义、社会控制模式以及被污名化者的管理策略具有重要影响。
