FOCUS
This research was made possible through the great help and cooperation received from the staff and ex-leprosy or better known as Hansen’s disease patients of Rajah Charles Brooke Memorial Hospital (RCBMH), Kuching, Sarawak and Unimas. Specifically, the director of RCBMH, Dr Goh Yi Xiong, Angelina Jong and Agnes Chung and the Dean of Faculty of Social Sciences and Humanities Unimas, Assoc Prof Dr Neilson Illan Mersat. This research would never have been possible without the ex-patients’ trust in us by opening up and sharing their sufferings and stigmatisation. We truly thank all who have made this research a reality.
Introduction
The outcome of this research has been written in a book titled The Curse of Leprosy. This book is focused on the life histories of 27 ex-Hansen’s disease patients, specifically in Rajah Charles Brooke Memorial Hospital (RCBMH) and Kampung Sinar Baru in Kuching, Sarawak.
This book spells their plights of family abandonment, separation, stigmatisation, disfigurement, and death which are beyond human comprehension.
History of Rajah Charles Brooke Hospital
In the early twentieth century, leprosy was a prevalent contagious disease in Sarawak. The fearful started when this region became a bustling shipping port for many traders from China, India and nearer neighbours’ regions (RCBMH, 2015).
Strict measures were undertaken by British colonial to prevent its spread within the people. Magistrates issued warrants of arrest for the unfortunate lepers and police had to escort them to the leprosarium (Raj, 2010).
Before the policy of compulsory segregation, lepers were banished from their villages and did not allow living near or having contact with people.
The warrant of arrest was issued between year 1917 until year 1974 (RCBMH, 2015). The compulsory of segregation written in Section 3(1) of the Leper Ordinance as:
“Whereas it has been proved to my satisfaction that (name of patient) now in the General Hospital, Kuching, is probably a leper. I (name of hospital staff) a Magistrate of 1st Class, in exercise of the power conferred on me by Section 3(1) of the Leper Ordinance, hereby order that the said (name of patient) to be detained in the Leper Settlement at Kuching, until he is discharged in due course of law. Given under my hand and the seal of the court this (date).”
The original name of the hospital was ‘Leper Camp’. It was the first leprosarium settlement at the 5th Mile, Rock Road which accommodated about 70 inmates. In 1917, a fund was set up and the public subscribed generously for a new settlement on Satang Island as a memory of the second Rajah, Sir Charles Brooke (Raj, 2010).
The construction of the building complex in the island was completed in 1924 and the transfer of the patients’ residence from 5th Mile, Penrissen Road to Satang Island took place in the same year.
However, Satang Island could not support the portion of patients’ necessities during monsoon season when food and the other supplies were delayed. It was extremely hard to make contact to the main land and communication was cut off (Raj, 2010; RCBMH, 2015).
On October 10, 1925, the Medical Department was instructed to transfer the patients to the present site at 13th Mile Penrissen Road. During those days, patients were transported to the 10th Mile of railway station and had to walk another three miles to the Rajah Charles Brooke Memorial Leprosarium (RCBMH, 2015).
The settlement became a centre for leprosy or Hansen’s disease patients to get the treatment around Borneo including Sarawak, Sabah, Brunei and Indonesia.
There were also immigrants from China and India who worked for the British in the colonial era received the treatment here in this leprosarium.
In 1926, the Sarawak government took over the Rajah Charles Brooke Memorial settlement. During that time, lepers commonly used chaulmoogra oil as traditional medicine to treat their pain although some patients had lost faith in it.
A superintendent was designated to the settlement to monitor the inmates. One of the superintendents was Hemish McGregor, the fifth superintendent of the Rajah Charles Brooke Memorial settlement who introduced many improvements and benefits for the residents.
He was a renowned leprosy worker from Scotland who served in the settlement from 1952 until 1962 (RCBMH, 2015).
McGregor initiated a 53-unit settlement covering an area of 62 acres with the capacity to hold as many as 380 patients. The units consisted of administrative blocks, dispensary, laboratory, wards, staff quarters, multipurpose hall and 22 units of patients’ dormitories.
Four to eight-doors of dormitories were done in beautiful simplicity (RCBMH, 2015). Most of the buildings were built by the patients themselves utilising materials from Satang Island.
The settlement was a prison for the inmates. Their lives ended in the leprosarium once they entered it and there was no way to leave the place.
Therefore, in order to give rights to the ex-patients, the first certificate was introduced in 1954 to signify their cure and acceptance into the society (RCBMH, 2015).
Slowly, they were allowed to leave the settlement and returned to where they belonged to. It became an annual event of grand scale that was anticipated by the residents because the certificate marked the patients’ return to society.
Still under McGregor, the initiative continued to provide the best for the inmates.
In early 1956, the Komuniti Besar (big community) was formed by the medical department to offer employment to the inmates.
The young and educated were employed as government servants in the settlement. They were trained to become nurses, cooks, hospital attendants, laboratory assistants, drivers, carpenters, cobblers and warden.
Vocational guidance was given at the Occupational Therapy Centre in order to support and assist them in finding suitable jobs upon discharge (RCBMH, 2015). The older ones were also not forgotten.
Those employed were called ‘patient-workers’. They were given a reasonable monthly allowance. These inmates, along with their families stayed in the dormitories.
Food and other necessities were supplied to them two times a week which comprised dry and wet food. The medical treatments were also given to them by medical assistants.
In 1962, the settlement was renamed as Rajah Charles Brooke Memorial Hospital (RCBMH) which signified the hospital was not only for the Hansen’s disease patients but also for outpatients.
In celebrating the renaming of the hospital, stage performances were carried out by famous artists such as Saloma, P. Ramlee, Aziz Satar, Ibrahim Pendek and Wahid Satay. They received a blast response from the residents and also the nearby villages.
To continue the supporting welfare of the former patients of Hansen’s disease and their families, Malaysian Leprosy Relief Association (MaLRA) of Sarawak branch was set up near the hospital in 1965 (Raj, 2010).
MaLRA provides financial assistance to the needy families, as well as it used to give transport allowance should the families have any follow-up appointments at the peripheral clinics (RCBMH, 2015).
In 1973, MaLRA was issued with TOL (temporary occupation licence) to occupy a piece of state land (about 100 acres) for ex-patients who started planting durian, tapioca, papaya, soya beans, maize, sweet potatoes, pineapple, groundnuts and cocoa in a relatively small scale (Raj, 2010).
The State Leprosy Control Programme was initiated in 1971, and launched on June 14, 1974 at the RCBM Hospital as its central registration office. It aimed to eliminate leprosy as a public health problem in the community within the next 20 years.
In 1980, the state government allocated a plot of land at Jalan Puncak Borneo to resettle the ex-leprosy patients and their families in a village, Kampung Sinar Baru.
The name of the village was given in the hope that there would be a bright future for the residents and induction in the mainstream society.
The village consisted of 59 ex-patients with a total population of 200 people during that time.
The villagers were assisted by MaLRA in terms of housing, planting, annual outing trips and other welfare facilities to help them come out from isolation and become useful members of the society.
Rajah Charles Brooke Memorial Hospital is a special medical care unit which one cannot find in any hospitals.
The community here is like a close family. They know each other, from the hospital staff to the cleaners.
The reason is most of the staff here are the descendants of the former patients and they have been living here since they were born. They have built close relationship here and enjoy life in a big community.
History of leprosy
People may not grasp the idea and fully understand leprosy.
What is leprosy? According to Raj (2010), “leprosy is a dreaded skin disease” that mainly attacks the nerves.
Leprosy is not a newly found affliction, it has been there since the medieval era, “Leprosy is an ancient disease, some Egyptian mummies indicate the presence of leprosy in Egypt” (Raj, 2010, p. 294). Those two ancient eras prove that leprosy has long made its way through the historical timeline.
Leprosy is also “a complex condition that not only affects patients physically but also it has social and psychological implications that must be considered” (Rafferty, 2005, pp. 119-120).
It does not only cause defection outside (of the body) but also inside (organs and mental). People with leprosy mostly suffer mentally rather than physically.
Most of them deal with their fate of having to lose certain parts of their bodies. In fact, they find it more difficult to deal with stigmatisation of the society.
According to Ramasubban, Crook and Singh (1991) “leprosy is a disease of zero mortality but high morbidity and stigmatising physical disabilities” (p. 2217).
This is because, those suffering from leprosy do not usually end up with death but they probably suffer from permanent defection of their physical appearance.
They take too long to seek for treatment. Chances to end up with disabilities are low if they get treatment during the early stages.
Chronic diseases such as leprosy and tuberculosis have “socio-environmental determinants affecting transmission and in the absence of sanitary and environmental reform, medicalisation of the disease can be expected to undergo intensification” (Ramasubban, Crook & Singh, 1991, p. 2217).
Where does leprosy come from? McEwen (1911) stated “leprosy is the disease probably as old as the human race, but early evidence of its existence is difficult to trace.
It is supposed to have originated in Egypt” (p. 195). Manchaster (1984) stated, “the earliest corporate evidence of leprosy is from the Dakhleh Oasis in Egypt”. Even Raj (2010) also mentioned that leprosy was indeed an ancient affliction.
Leprosy does not make a sudden appearance; if it is there, people deal with it in many ways. To some extent, those affected with leprosy are neglected by their society. Taken into account on what Raj (2010) wrote in his book, Struggle to Overcome Prejudice against Leprosy: A Malaysian Success Story.
He uses an example from medieval era, during those days, people with leprosy were completely ignored and pushed aside.
In olden time, the so-called normal people used to create a very clear borderline between them and the lepers.
They forced the lepers to dress differently. The lepers needed to wear some kind of cloak that was specifically designed for them.
Whenever they intended to go outside, they needed to bring with them a bell that acted as a warning to the public that they were there.
Who discovered leprosy? The important person who stands behind this important discovery was Gerhard Henrik Armauer Hansen.
“Hansen was born in Bergen in 1841” (Kato, 1973, p. 627). He studied medicine in Oslo and graduated in 1866.
Vogelsang (1965) once wrote in one of his writings entitled Leprosy in Norway:
“A change in this view came in 1868 when Armauer Hansen was attached to the leper hospitals in Bergen. He quickly came to the conclusion that leprosy is a specific disease which must have a specific cause. On the basis of this conception he worked indefatigably and insistently until he succeeded in finding the causative agent of the disease.” (p. 32)
Therefore, leprosy is also known as Hansen’s disease, name taken from the person that had discovered the causative agent for the most feared disease back in those days. “Classical description of the leprosy bacillus was presented to the society in 1873” (Vogelsang, 1965, p. 33). Microorganism causing leprosy bacillus was called as M. Leprae.
How did people react to leprosy in the olden days? Those so-called normal people seemed to have some consistent and fixed perception that if they were close to lepers, they had a high chance in getting infected with the affliction.
What more if they interact with them, either through verbal or physical interaction, they may end up getting the disease.
The society must have their own reasons especially those who lived during the Middle Ages. “A lot of the stigma in the past was based on the perception that leprosy was not just a disease but a curse and that disease was incurable” (Raj, 2010, p. 290). The ‘incurable’ part has indirectly created the stigma inside the society on how they view leprosy.
But, “the isolation of lepers was not absolute in the Middle Ages; they were allowed out of the lazar houses to beg for alms, thereby having some contact with the healthy population” (Manchaster, 1984, p. 171).
However, the lepers are kept at a safe distance from the outsiders in order to avoid in transmitting infection.
Lepers in the Middle Ages were not being put under the responsibilities of the hospital or their medical staffs. Instead, those who were diagnosed with leprosy were put under the responsibility of the local church and village elders, as clinical precision was unknown at that time (Manchaster, 1984, p. 171).
Of course, the isolation and stigmatisation did not only remain in the past. Both are still very much present in our society in this modern day of 21st century. But, isolation and stigmatisation are slowly decreasing through education and awareness campaigns.
How was leprosy treated? During the earlier eras, especially the Middle Age, cure and treatment for leprosy did not seem to come into light.
Thus, it made the situation and condition for the lepers worst. “Cure for leprosy first became a possibility in the early 1950, with Dapsone therapy, a drug to be taken daily for a minimum period of three years but in some cases over a lifetime” (Ramasubban, Crook & Singh, 1991, p. 2217).
However, in some cases the Dapsone therapy did not really work out and some of the lepers’ immune system could not tolerate with the after effects of the Dapsone pills.
Then, in 1980s, there was the introduction of the multi-drug treatment, also known as MDT. “Multi-drug therapy brought down the duration of cure between six months to 36 months depending on laboratory determination of patient infectivity” (Ramasubban, Crook & Singh, 1991, p. 2218).
MDT was more compatible with the immunity system. It has been “more effective and time-round cure” (Ramasubban, Crook & Singh, 1991, p. 2217) for leprosy.
Before the modern medicines and pills came into action, the society in the olden days dealt with leprosy using traditional treatment.
At that time, the chaulmoogra tree had played an important role in helping out lepers in treating their affliction.
In one of Nicholls (1922) writings, he mentioned, “the injections of soaps of fatty acids of chaulmoogra oil, or the esters of this oil” (p. 892).
Every treatment has some side effects. Fortunately, side effects brought by chaulmoogra oil were still endurable by some patients.
The lepers needed to bear the strong smell of the oil especially when rubbed through bodies. It also took a much longer healing time and showed different body reactions.
The Acts for leprosy
The two Acts are:
* Lepers Act 1898
* Contagious Diseases Act. These acts are important for the leprosy patients and in protecting their rights as human beings.
Dr Parveen Kaur is a senior lecturer at the Department of Anthropology and Sociology, Faculty of Social Sciences and Humanities, University Malaysia Sarawak in East Malaysia.
