Dynamics of Stigma in Leprosy1, The

International Journal of Leprosy and Other Mycobacterial Diseases, Dec 2004 by Heijnders, M L

ABSTRACT

Leprosy in Nepal is a stigmatizing disease. This paper explores the different coping strategies employed by people affected by leprosy to manage stigma. It is based on a qualitative study conducted in the eastern part of Nepal. It will show that a difference exists between experienced stigma and the anticipation of stigma. Both types of stigma result in different coping strategies. In managing stigma people go through different phases. This paper will show that stigma is a dynamic process, and I will elaborate on the concealment cycle, as developed by Hyland, to produce a more detailed understanding of the stigmatization process in Nepal. Doing so, it highlights the importance of a mutual concealment phase and the importance of triggers to exposure and discrimination. Changing from one phase to a subsequent phase in the stigmatization process is always triggered. It highlights further, that even within the same culture and even the same village, social differentiation makes a significant difference on the impact of stigma and the coping strategies employed in managing stigma. Stigma enforces already existing inequalities in social class, gender, and age.

RÉSUMÉ

La lèpre au Népal est une maladie stigmatisée. Cet article étudie les stratégies variées utilisées par les personnes souffrant de lèpre pour éviter la stigmatisation. Il utilise des données d'une étude qualitative conduite dans la partie Est du Népal. Il montre que des différences existent entre une stigmatisation déjà vécue et une stigmatisation anticipée. Les deux types de stigmatisation résultent en des stratégies différentes d'évitement. Pour éviter la stigmatisation, les personnes passent par plusieurs phases. Cet article va démontrer que la stigmatisation est un processus dynamique, et je vais m'étendre plus particulièrement sur le cycle de dissimulation, comme développé par Hyland, afin de mieux comprendre et de façon plus détaillée le processus de stigmatisation au Népal. Ce faisant, cet article montre l'importance de la phase de dissimulation mutuelle et de l'importance des facteurs déclenchant lors de la révélation et de la discrimination. Le changement d'une phase à la suivante en stigmatisation est toujours déclenché. Cet article met de plus en lumière que, même au sein d'une même culture et dans le cercle d'un même village, la différenciation sociale introduit une différence significative sur l'impact de la stigmatisation et dans les stratégies d'évitement dirigées contre celle-ci. La stigmatisation met en application et fait valoir les inégalités déjà existantes de classe sociale, de genre et d'âge.

RESUMEN

La lepra en Nepal es una enfermedad estigmatizante. Este trabajo explora las diferentes estrategias seguidas por la gente afectada de lepra para sobreponerse al estigma. Se basa en un estudio cualitativo realizado en la parte oriental de Nepal. Muestra que existe una diferencia entre el estigma ya experimentado y la anticipación al estigma. Cada tipo de estigma se acompaña de diferentes estrategias de protección. Para manejar el estigma la gente pasa por diferentes etapas. El estudio muestra que el estigma es un proceso dinámico y en él se analiza el ciclo de confinamiento desarrollado por Hyland para entender de manera más detallada el proceso de estigmatización en Nepal. Al hacer esto, se resalta la importancia de una fase de confinamiento mutuo y la importancia de eventos que disparan la exposición y la discriminación. El cambio de una fase a la fase subsiguiente en el proceso de estigmatización es siempre un evento disparado. El estudio subraya además que dentro de la misma cultura y aún en la misma localidad, la segregación social influye de manera muy importante en el impacto del estigma y en las estrategias seguidas para manejarlo. El estigma refuerza las desigualdades ya existentes en clase social, género y edad.

Stigma is a dynamic process. Many people with leprosy are affected by stigmatization. For the individual, stigma often leads to a "spoiled identity" (6). After a person is labelled as leprous, there are negative social consequences for this person and his or her family. Stigma marks the possessor as socially unacceptable or as an inferior being, and the effect of "being labelled in this way is that people's stigma can come to dominate the perception that others have of them and how they treat them" (12). Van Brakel, in his review on measurement of stigma, concluded that "despite enormous, cultural diversity, many areas of life affected by stigma are remarkably similar in different countries. They include mobility, interpersonal relationships, marriage, employment, leisure activities and attendance at social and religious functions" (14). However, how people are affected by stigma varies from culture to culture.

It is important to regard stigmatization as a process (9, 11, 16). During this process the label or attribute given to a person influences the social interaction between the labelled person and others. The person is labelled negatively, his or her status is devalued, and consequently the label could have negative consequences for this person, personally and socially. As Hayward and Bright (7), and Bainson and van de Borne (2) argue, the label modifies the actions of others towards the labelled person. Bainson and van de Borne further argue that probably the often present physical marks in leprosy generate a negative response in other people. According to Goffman (6), persons who share the same cause of stigma tend to have similar learning experiences in the management of the stigma, and they go through the same socialization process. He conceptualizes this as "the moral career of stigma." The moral career is the sequence of adjustments people make in managing stigma. Similarly, Alonzo and Reynolds (1) and Hyland (9) describe stigmatization as a dynamic process, in which the affected person passes through several phases. In each phase, the person affected copes by using specific coping strategies and in each phase, other people's responses are different.