Light moment: Gurjit and Yong posing for the camera during the tour of the leprosarium.
Back in Form Four, when I was looking for a book to share in my state-level Nadi Ilmu Amalan Membaca (Nilam) competition, I stumbled across a book cover bearing a black-and-white picture of a woman.
Intrigued, I borrowed it from the library, unaware of the journey it would take me on. By the end of it, I was moved to tears.
While it evoked sorrow, despair and rage, it also brought a sense of hope. I knew instantly that it was the perfect book for me to talk about in the competition.
Titled The Way Home, the book, written by Tan Ean Nee and Joshua Wong, offers firsthand stories of leprosy patients.
Known as Hansen’s disease, leprosy is caused by a slow-growing bacterium called Mycobacterium leprae. It affects the skin, nerves, eyes and the lining of the nose, and if left untreated, can result in physical disabilities.
It does not discriminate against the people who suffer from it; rather, it is the afflicted who are often discriminated against and excluded.
Did you know that leprosy was also known as the “separating disease”? Through this book, I learnt that during the early to mid-20th century, particularly in the 1930s, parents and children were often separated by this disease, with the children of patients being sent away to avoid infecting them.
They were also separated in the hope that the children would have a better life and escape the stigma of being the offspring of leprosy patients, which, at the time, was worse, as people would avoid anyone associated with the disease.
From reading the personal accounts, I learnt the true meaning of a parent’s love and sacrifice. I read about parents waiting in vain to see the children who were taken away at birth, parents who had been reunited with their children, and children seeking their parents, both alive and dead.
Some of these parents do not even seek acknowledgment; they simply wish to ensure their children are doing well and to see them before they depart from this world.
Reading the collection of stories in the book opened my eyes to the struggles that the patients faced back then and continue to face today. The accounts of their lives reveal not only their physical and emotional pain but also their resilience and courage in the face of immense adversity.
These are stories of survival, of enduring separation from loved ones, and of battling against a disease that brought with it societal rejection and stigma.
Back in May, I had the chance to visit the Sungai Buloh Leprosarium, which has been on the tentative list of Unesco World Heritage Sites since February 2019, to attend the Valley Got Talent Art Market.
The event showcased art created by leprosy survivors and offered visitors an opportunity to engage with local seniors about their experiences living in the leprosarium.
I was lucky enough to tour the leprosarium, also known as the Valley of Hope, with Uncle Phillip Yong, a former patient, on his motorcycle. He explained the history and culture to me in detail.
As I rode through the quiet streets on the back of Uncle Phillip’s motorcycle, the stories from The Way Home echoed in my mind.
Passing by the rows of houses being overtaken by vines and crumbling under the weight of time, I could almost visualise the scenes described in the book, feeling a deeper connection to the struggles and triumphs of the patients.
I was also surprised to see a Hindu temple, a Buddhist temple, churches and a mosque within the leprosarium. It is a testament to how people of different faiths can happily coexist despite their diverse backgrounds.
At the peak of its time, the settlement had 2,440 patients, and now there are around 87 people left, all of whom are already in their golden years.
The emotions that the former patients felt were palpable as they shared their stories with me. From moments of nostalgia to reflections on the passage of time, each interaction offered a glimpse into the depth of their humanity.
There was joy and sorrow, all intermingled in a tapestry of shared experiences. Together, we created a bond forged through understanding and empathy.
After engaging with them and visiting the leprosarium, I came to understand the profound impact of generations of misconceptions and misunderstandings surrounding leprosy.
These long-standing misunderstandings have fostered stigmatisation that persists to this day.
It dawned on me how many of the challenges we face, both in our personal lives and as a nation, stem from misunderstandings.When we shed light on these issues, we can dismantle the barriers created by misunderstanding – not just those related to leprosy, but any issue that divides us.
By doing so, we pave the way for a society where people of all races and backgrounds can live together harmoniously, fostering unity and progress for our country.
Learning the truth behind the stigmatisation of leprosy and actively educating ourselves and others about the facts is a testament to our progress as a society. It signifies our willingness to confront ignorance and move forward together.
By including everyone in this journey, we create a space where every voice is heard and respected, fostering a sense of unity and belonging for all, including those affected by leprosy.
True progress is realised when we take the time to understand each other’s pain and perspectives. It is through this understanding that true peace can be achieved, transcending barriers and divisions to create a more compassionate and harmonious world.
Gurjit, 18, a student in Pahang, is a participant of the BRATs Young Journalist Programme run by The Star’s Newspaper-in-Education (Star-NiE) team.
For updates on the BRATs programme, go to facebook.com/niebrats
.With the theme of the article in mind, carry out the following English language activities.
1 In about 350 words, write a story about a leprosy patient who struggles to be accepted by society. The story should explore themes such as stigma and discrimination. Conclude with a lesson on the importance of empathy.
2 What is another example of stigma that you think Malaysian society should work to overcome?
What are some ways to address this issue? Discuss with your friends.
The Star’s Newspaper-in-Education (Star-NiE) programme promotes the use of English language in primary and secondary schools nationwide.
For Star-NiE enquiries, email starnie@thestar.com.my.
