U Soe Win: Wellesley Bailey Awards 2024 Winner
U Soe Win is one of four individuals to win the Wellesley Bailey Award in 2024. This is his story.
Unexpected news shook his life
U Soe Win, a 66-year-old from Myanmar, first noticed symptoms of leprosy in 1983 at the age of 30. He was a successful farmer, but his life changed drastically after being diagnosed with leprosy at Pathein General Hospital. Despite severe stigma and discrimination from his community, U Soe Win persevered. He sought various treatments, including traditional methods that worsened his condition, leading to severe impairments and significant financial losses, including 16 acres of paddy fields, cows, and buffalos.
“I felt real pain and sadness during these years because people would look at me with disgust. I faced terrible discrimination from my community and so I started to avoid them. I spent most of my time hidden in my house.”
The physical and emotional toll led him to attempt suicide three times, but his family never left his side and helped him continue living for his daughter’s sake.
U Soe overcame stigma, and found empowerment
In 1994, U Soe Win received Multi-Drug Therapy (MDT), which improved his health. However, social stigma remained. In 2010, a middleman encouraged him to sell his vegetables directly in the market, restoring his confidence and helping him reintegrate into society. In 2011, The Leprosy Mission Myanmar (TLMM) invited him to an awareness event in his village. Initially hesitant, he participated and found acceptance from his community, leading to the formation of a Self-Help Group (SHG). This significantly boosted his self-esteem, and he became a leader within the group, fostering mutual support among its members.
His leadership and advocacy opened a door for those affected by leprosy
U Soe Win’s leadership extended beyond his village. In 2012, he attended a Community-Based Rehabilitation (CBR) Forum in Yangon, marking his first trip outside his hometown. His confidence grew as he spoke at public events, including a regional ministerial event on the International Day of Disabled Persons. His dedication and leadership were recognised nationally and internationally. In 2015, he attended the 3rd Asia-Pacific CBR Congress in Tokyo and several significant events, including sessions at the United Nations in Geneva. His efforts led to the formation of the Myanmar Association of Persons Affected by Leprosy (MAPAL), where he serves as Chairperson. Under his leadership, MAPAL has grown to include 16 grassroots branches with 581 members, providing vital support and advocacy for people affected by leprosy.
“This gave me so much confidence; I was excited to do things for people like me, to be a part of a group that supported each other. My self-esteem was restored and I was finally able to stand proudly in front of other people again.”
A legacy that cannot be stopped
U Soe Win’s tireless advocacy has brought him to international platforms. In 2019, he attended the Pre-sessional Working Group of the UN Committee on the Rights of Persons with Disabilities (CRPD) and the 22nd Session of the CRPD Committee in Geneva. He also participated in the Global Forum of Organisations of Persons Affected by Leprosy and the 20th International Leprosy Congress in Manila in 2019. Through these platforms, he has highlighted the challenges faced by people affected by leprosy and advocated for their rights.
His work has profoundly helped in reducing stigma and discrimination against people affected by leprosy in Myanmar. He has facilitated access to treatment, supported the distribution of essential supplies, and advocated for the rights of persons affected by leprosy. His involvement in awareness campaigns and community support has encouraged many to seek help and reintegrate into society. Even as he faces his own health challenges, U Soe Win remains committed to his mission. His journey from a farmer diagnosed with leprosy to a national and international advocate exemplifies resilience and dedication. Through his leadership, MAPAL continues to strive for a world free from the stigma of leprosy, ensuring that affected individuals are seen, heard, and supported.
U Soe Win’s unwavering commitment to improving the lives of people affected by leprosy, despite his personal hardships, demonstrates his exceptional dedication and leadership. His ability to transform his own life and inspire others to overcome stigma and discrimination makes him a worthy recipient of the Wellesley Bailey Award.