Voices of Former Hansenites in Sarawak, Borneo: A Short Note: Unveiling Hidden Voices of Persons Affected by Hansen's Disease

By Atiqah Abd Rahim

This book recounts the historical background of the only former leprosarium in Borneo, Rajah Charles Brooke Memorial Hospital (RCBMH) and a village settlement for those who have afflicted by Hansen's disease, Kampung Sinar Baru, along with hidden voices of its residents. In the early 1900s, Hansen's disease or leprosy was a stigmatised affliction around the Borneo Island. The policy of compulsory segregation into RCBMH was seen as the only practical way to protect members of society from the contagion of the affliction. Separation from the family has had the biggest impact on the lives of most Hansenites. Bringing together memoirs and narratives of these former Hansenites, this book hopes to end the stigma of Hansen's disease.

• Language: English
• Publisher: The Inspiration Hub
• Release date: Feb 9, 2020
• ISBN: 9789670730523

Book preview

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Contents

List of Maps

List of Tables

List of Images

List of Abbreviation

Acknowledgement

Preface

Chapter 1: Introduction

A brief review on the early history of Hansen’s disease

What is Hansen’s disease?

Entering the field

Unveil voices of persons affected by Hansen’s disease in Sarawak

Chapter 2: Compulsory Segregation in Borneo

Rajah Charles Brooke Memorial Hospital

General routines and ventures of the Hansenites

Treatment in RCBMH

Kampung Sinar Baru Settlement Project

Chapter 3: Life Within the Wall

I am thankful to people at the RCBMH

I am keen on keeping history records

I was a hardworking patient-worker

The life of a Kayan Hansenite

Live life as it is

Don’t focus on what has been taken away

A sacrifice for my father

A Hansenite in the 1985’s generation

Chapter 4: Author’s Note and Diary Photos

References

List of Maps

Map 1: Borneo and three countries

Map 2: Kampung Sinar Baru is surrounded by Bidayuh and Malay villages

Map 3: The image of Kampung Sinar Baru

Map 4: The pattern of settlement at Kampung Sinar Baru

List of Tables

Table 1: Chronological List of Principal Officers at the RCBMH

Table 2: Chronological List of Medical Officers at the RCBMH

Table 3: Total households of Kampung Sinar Baru and total households occupied by the former Hansenites in 2018

Table 4: Number of the former Hansenites living in Kampung Sinar Baru in 2018

List of Images

Image 1: A portrait of the hospital staff and Hansenites in front of the old gate at the Rajah Charles Brooke Memorial Hospital upon the end of the administration of Mr MacGregor in 1962

Image 2: The recent entry gate at the Rajah Charles Brooke Memorial Hospital in 2018

Image 3: A warrant of detention for the Hansenites

Image 4: The medical assistant, Haji Atahari was giving a medical lesson in a class for the patient-workers before starting their responsibilities in the wards and laboratory

Image 5: Medical staff of the RCBMH

Image 6: Medical staff of the RCBMH

Image 7: Daily activities of the Hansenites at the RCBMH

Image 8: Two former Hansenites who were responsible for film screening

Image 9: Residents of the RCBMH celebrated Eid Fitri

Image 10: The residents in one of the celebrations

Image 11: Children at the RCBMH church, dated on 1st May 1976

Image 12: The hall that was used for watching movies every weekend

Image 13: An old alternative bridge at the RCBMH

Image 14: The alternative bridge for the outsiders and residents to go in and out of the hospital in the past

Image 15: Former wards for the Hansenites

Image 16: A small road that connects to the back of the hospital and leads to the dormitories

Image 17: The dormitories

Image 18: The dormitories

Image 19: The dormitories

Image 20: A 4-door dormitory

Image 21: An 8-door dormitory

Image 22: The right side of the dormitory was used as kitchens and toilets whilst the left side was for a sleeping place

Image 23: A Chinese temple and graveyard

Image 24: The Catholic church

Image 25: The surau

Image 26: The Rumah Kenyalang

Image 27: One of the durian plants in the RCBMH compound

Image 28: The old graveyard

Image 29: A burning place for wasted liquid and ward equipment

Image 30: A scaly-skin like of chaulmoogra fruit from its tree at the RCBMH

Image 31: An old Hydnocarpus wightiana tree standing on the ground

Image 32: A new Hydnocarpus wightiana tree planted by staff of the RCBMH and becomes one of the attractions to visitors

Image 33: Durian plants are common at Kampung Sinar Baru

Image 34: Pepper plants at one household at Kampung Sinar Baru

Image 35: Evening activities at Kampung Sinar Baru

Image 36: Medical staff of the RCBMH with Generawi Mok

Image 37: A handicraft booth by Madam Rose during the Open Day of the RCBMH in the 1980s

Image 38: A trip to Damai Beach sponsored by the MaLRA

Image 39: A pastor from Pak Isa’s hometown paid a visit to the RCBMH

Image 40: Pak Isa with other residents in one of the events at the RCBMH hall

Image 41: Pak Isa and Mak Mina in their net-garden

Image 42: Beautiful rows of spinach owned by Pak Isa

Image 43: Madam Lily and her family lived in the staff quarters that is located in front of the RCBMH

Image 44: Madam Lily with other staff working in the wards, clinics, laboratory and Leprosy Centre Control in the 1980s

Image 45: Mak Yan with other villagers on a Friday’s prayer meeting

Image 46: Mak Yan returned from her garden

Image 47: Mak Suri was in front of her house which was constructed by the RCBMH in 1984

Image 48: The children of former Hansenites worked as janitors at the RCBMH 80

Image 49: Mak Iris’s family in the dormitory of the RCBMH

Image 50: A temporary hut that was built by Mak Iris’s husband during the house construction at Kampung Sinar Baru

Image 51: Children wear traditional costumes welcoming the VIP arrival at the RCBMH

Image 52: Traditional pattern on the door made by Mak Iris’s husband

Image 53: The electric power store that controlled the electric supply for the dormitories

Image 54: Pak Ahmad and his colleague as workers at the RCBMH

List of Abbreviation

BB Borderline Leprosy

BL Borderline Lepromatous

BT Borderline Tuberculoid

DDS diaminodiphenyl sulfone

DPT diphenylthiourea

HA Hospital’s Assistant

LCC Leprosy Control Centre

LL Lepromatous Leprosy

MaLRA Malaysian Leprosy Relief Association

MB Multibacillary Leprosy

MDT Multi Drug Therapy

OPD Outpatient Dispensary

PB Paucibacillary Leprosy

RCBMH Rajah Charles Brooke Memorial Hospital

TT Tuberculoid Leprosy

WHO World Health Organization

Acknowledgement

This book is a dedication to those who have been affected by Hansen’s disease or leprosy, one of the most stigmatised afflictions known in human history, especially to all informants who had experienced rejection due to the misconceptions on the nature of Hansen’s disease. Sadly, I have chosen to use pseudonyms in their stories to protect their identities, although I owe them a debt of gratitude. Until then, I have meant to honour their kindness for spending a lot of time sharing their rich lives and answering all of my curious questions. The fieldwork could not have been completed without my adoptive family who specially treated me like their own child – the warmth, love and food had never been less throughout my stay at the village. I am thankful to all elders in the village for their affection. To all the children who kept following me and made my restless days better, thank you very much for making it a livelier environment for me. My heart is always for Kampung Sinar Baru.

This book is the outcome of my master’s degree thesis at the Faculty of Social Sciences and Humanities, Universiti Malaysia Sarawak, Malaysia. I am grateful to UNIMAS Zamalah Graduate Scholarship for helping to support my study and three months of research fieldwork at Kampung Sinar Baru. Throughout the writing and publication process, I have benefited from Kotex #SheCan Fund for funding the publication of this book. Special thanks to my lovely ex-lecturer, Prof. Hew Cheng Sim for sharing her experience doing research on Hansen’s disease in the 1980s which was among the earliest studies ever conducted in Sarawak. Unfortunately, there was a fire incident at her office, and she lost many research materials. Hence, I had no chance to dig older information, except for an online journal article she published. More special thanks go