Learning from a leprosy project in Indonesia: making mindsets explicit for stigma reduction

Abstract

International attention for disability recognises that it plays an important role in persistent poverty. Leprosy can cause preventable disability. Stigma associated with leprosy often has greater implications for people affected than physical impairments. The Stigma Assessment and Reduction of Impact (SARI) project in Indonesia employs an action research methodology to develop stigma reduction interventions. By exploring the different mindsets of the stakeholders in the reconnaissance phase of the project, the project identified differences in aspirations, attitudes to research, and conflicting intrinsic models of disability. The differences in mindsets are not symptoms of failure but, rather, should be actively sought out.

L'attention internationale accordée aux handicaps reconnaît qu'ils peuvent jouer un rôle important dans la persistance de la pauvreté. La lèpre peut entraîner des handicaps évitables. La stigmatisation associée à la lèpre a souvent des implications plus importantes pour les personnes touchées que les handicaps physiques. Le projet Stigma Assessment and Reduction of Impact (SARI — Évaluation de la stigmatisation et réduction de l'impact) en Indonésie a recours à une méthodologie de recherche-action pour élaborer des interventions de réduction de la stigmatisation. En explorant les différentes mentalités des parties prenantes durant la phase de reconnaissance du projet, ce dernier a identifié des différences sur le plan des aspirations, des attitudes relatives aux recherches et des modèles intrinsèques contradictoires des handicaps. Les différences de mentalité ne sont pas des symptômes d’échec ; il convient en fait de les mettre en évidence.

A nivel internacional, el discurso sobre las discapacidades reconoce que estas desempeñan un papel importante en la persistencia de la pobreza. A menudo, el estigma asociado a la lepra, más que las limitaciones físicas que conlleva, es el que genera implicaciones más significativas para las personas afectadas por esta enfermedad. El proyecto de Valoración del Estigma y Reducción de su Impacto (sari por sus siglas en inglés) desarrollado en Indonesia utiliza una metodología de investigación-acción orientada a diseñar intervenciones que permitan disminuir el estigma. A partir del análisis de distintas actitudes de los actores más importantes durante la fase de reconocimiento del proyecto, se identificaron diferencias en cuanto a aspiraciones, a actitudes vinculadas a la investigación y a modelos intrínsecos de discapacidad que se encuentran en disputa. Estas actitudes diferenciadas no constituyen un síntoma de fracaso sino que deben ser buscadas activamente.

Keywords:

• Gender and diversity – Disability
• Social sector – Health
• Civil society – Partnership
• Participation
• NGOs
• Oceania and Japan

Acknowledgements

We would like to thank all participants of the SARI project and share our appreciation to the District Health Office, Provincial Health Office and Subdit Kusta of the Ministry of Health for facilitating this study. We also thank Sarah Cummings and Mike Powell for their valuable comments on earlier drafts.

Disclosure statement

No potential conflict of interest was reported by the authors.

Funding

The study was supported by grants from Netherlands Leprosy Relief (NLR), Sasakawa Memorial Health Foundation (SMHF), the American Leprosy Missions (ALM), and effect:hope (formally The Leprosy Mission Canada [709.00.22]).

Notes on contributors

Ruth M.H. Peters is a PhD candidate at the Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, The Netherlands. Her main field of study is public health research and development studies.

Mimi Lusli is a PhD candidate at the Centre for Disability Studies, Faculty of Social and Political Sciences, Universitas Indonesia, Depok.

Marjolein B.M. Zweekhorst is an Associate Professor at the Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, The Netherlands.

Beatriz Miranda-Galarza is a Post-doctoral Researcher at the Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, The Netherlands.

Wim H. van Brakel is Senior Technical Consultant, Netherlands Leprosy Relief, Amsterdam, and former Assistant Professor at the Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, The Netherlands.

Irwanto is a Professor and the Director of the Centre for Disability Studies, Faculty of Social and Political Sciences, Universitas Indonesia, Depok.

Joske F.G. Bunders is a Professor and former Director of the Athena Institute, Faculty of Earth and Life Sciences, VU University Amsterdam, The Netherlands.

Notes

1. For more information on leprosy control and epidemiology in Indonesia, see Peters et al. (2013).

2. Reconnaissance is a defined phase in the ILA approach. As such, for purposes of continuity and clarity we decided to use it, despite its common usage in situations of conflict.

3. Darkening of the skin is a temporary side-effect of clofazimine a component of the Multi Drug Therapy.