Leprosy: Getting over our stigma by getting to know them

We recently help to organise a rather unique Raya event. Not so much about the programme itself, which is filled with cheers and laughter – and food, of course – of a typical Malaysian Raya do, but its uniqueness lies with the guests.

They are the elderly residents at the National Leprosy Control Centre (NLCC) in Sungai Buloh.

The event was organised and hosted by the Sungai Buloh Settlement Heritage Society (SBSHS), of which we are a part of, with the aim of preserving and promoting NLCC as a unique living heritage to a wider audience.

As a voluntary organisation, SBSHS plays a role in fostering spirit and respect within the involved community, particularly the marginalised ones.

Leprosy is caused by the bacterium Mycobacterium leprae, an infection known since the ancient times. Its treatment has changed over the course of human civilisation, and since the 1980s the World Health Organisation (WHO) has recommended the use of multidrug therapy (MDT) regimen, which has effectively treated and control the spread of the disease.

WHO declared the disease eliminated in most countries by 2010, although it remained endemic in some.

The NLCC was established in 1926 to help stop the spread of the nerve-damaging illness, and now has become a crucial institution in the care and rehabilitation of former leprosy patients in Malaysia.

Because of its important role, a segment of the NLCC known as the ‘Taman Warisan Kusta Negara’ was nominated for inclusion in the tentative list of UNESCO World Heritage Sites by the National Heritage Department in 2019, and efforts are underway to secure its recognition by 2026. This recognition reflects the historical and cultural significance of the site in the context of leprosy control and its impact on our healthcare history.

The Raya event was organised as an occasion for celebration, yes; but also as part of our journey in continuing the conversation on leprosy and its heritage.

One of the most moving moments during the Raya event was witnessing the participation of NLCC residents in cultural performances and engaging conversations. A standout performance was by Lim Booi Nya, a resident of NLCC, who delivered a soulful rendition of the song “Sweet On You” in Mandarin.

There were a total of 56 residents attending this gathering, all of whom are ex-leprosy patient that resides in the Sungai Buloh Settlement. These individuals, who have faced the stigma associated with leprosy all their lives, displayed remarkable resilience and a zest for life that defied stereotypes.

Their willingness to embrace the festivities and openly share their stories exemplified a profound courage, demonstrating that societal barriers can be overcome with grace and dignity. The event brought together volunteers from diverse backgrounds, each contributing to create a memorable experience for the elderly residents.

This collaborative effort showcased the strength of community spirit and the transformative impact of collective action. It serves as a reminder that when all of us unite for a common cause, we can achieve remarkable results and inspire positive change. More importantly, the event prompted us to reflect on our own fears and biases that may hinder genuine connections with others.

It encouraged introspection on how societal norms and perceptions can shape our interactions and limit our understanding of diverse experiences. It urged us to consider stepping out of our comfort zone, just as the residents of NLCC bravely face each day with resilience and hope.

As we entertain these reflections, we are reminded of the words of the Prophet Muhammad who said: “None of you will believe until you love for your brother what you love for yourself” (Related by Bukhari and Muslim).

Loving others as you love yourself is imperative, as it acknowledges that you are not the proverbial centre of the universe. Coexistence with others requires mutual respect and accommodation.

This Raya event has exemplified the transformative power of service, unity, and empathy. It serves as a call to action for all of us to embrace diversity, confront our fears, and forge meaningful connections that transcend any kinds of societal barriers.

Let’s join hands during this seemingly never-ending Raya season to bring joy to our community, breaking the stigmatic fears associated with leprosy regardless of one’s status, race, or religion!

Sr Dr. Zuraini Md Ali is a Senior Lecturer at the Building Surveying Department, Faculty of Built Environment, Universiti Malaya, and Vice-President of SBSHS Dr Nor Hayati is an Assistant Professor at the School of Architecture, Faculty of Built Environment, Tuanku Abdul Rahman University of Management and Technology (TAR UMT), and President of SBSHS.

The views expressed in this article are the author's own and do not necessarily reflect those of Sinar Daily.