Social Construction of Hansen's disease : Voices of Former Hansenites at Kampung Sinar Baru, Sarawak

Atiqah, Binti Abd Rahim (2020) Social Construction of Hansen's disease : Voices of Former Hansenites at Kampung Sinar Baru, Sarawak. Masters thesis, Universiti Malaysia Sarawak (UNIMAS).

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Abstract

Hansen’s disease, which is also known as leprosy, is one of the dreaded skin afflictions in human history. It had an image of a highly contagious, incurable and hereditary disease. Although Hansen’s disease has been disappearing and is relatively a historical malady in most countries, continuous humiliation and stigmatisation towards the afflicted persons led many initiatives and forms of inclusion initiated by the state, self-help groups and international non-profit organisations. This thesis is based on an ethnographic fieldwork that examined the social constructions of Hansen’s disease in Sarawak, and how these constructions have affected the social life of former Hansenites and their families at Kampung Sinar Baru. The study then evaluates on how the understanding of the social constructions of the disease integrates and includes persons affected by Hansen’s disease into society. A theoretical framework suggests that the notion of social inclusion in the Global Leprosy Strategy 2016-2020 should be integrated into the complex and contested social construction of Hansen’s disease Understanding the complexities of social constructions gives opportunities to the affected persons to express how they wish society to perceive and integrate them into a so-called inclusive society. The findings reveal that the social construction of illness or Hansen’s disease is not only about people who are experiencing it but also the power relations in regard to disseminating ideas about the disease. The ideas that every Hansenite should be sent away to an isolated leprosarium and to separate them from any interaction and communication from public, had dominated the mind of Sarawakians during the nineteenth century. Based on the ideas given by the state, each ethnic group in Sarawak constructed their own perceptions and attitudes regarding Hansen’s disease. Nonetheless, whilst the existing belief and worldviews have been trailed in the communities, the construction of Hansen’s disease is seen as more associated with the subjective experiences of the afflicted persons. Every family has their own stories on experiencing the affliction and people learn how to cope and adapt when diagnosed with Hansen’s disease individually. Lastly, the study suggested on the understanding of social construction of Hansen’s disease before any intervention with the residents of Kampung Sinar Baru. The thesis evaluates and suggests two key points on how the understanding of the social construction of Hansen’s disease integrates and includes persons affected by the affliction into society. The two points are; firstly, it provides a great relief and empowers the needs of the former Hansenites to meld into mainstream society, and secondly, acceptance and understanding by the society are essential to reintegrate these former Hansenites into an inclusive society that accept all background differences.

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