On January 18, 2024, the Y-stars community mourned the passing of Ee Kong, their eldest member at 51. This tight-knit group of adults with Down Syndrome has shown remarkable resilience over two decades. Established by caregivers for mutual support, Y-stars has fostered a profound sense of connection through regular gatherings for weekly dance and art classes. Extra•Ordinary People (EPL) has been honoured to host this group at our premises. In commemoration of World Down Syndrome Day, we share EK’s story with the permission of EK’s mentors.
The profound loss of Ee Kong left an indelible mark on the Y-Stars, who, accustomed to their weekly routine of dance and art, faced the challenge of navigating the loss of a dear friend in their community.
In the gathering that followed on January 20, their EPL art teacher adjusted the lesson plan to create art in memory of their “big sister” and friend, Ee Kong. During the session, the Y-stars were brought through a time of sharing by their teacher. Amidst fond memories of how Ee Kong would smile till her tongue stuck out and how one Y-star used to actively care for and push EK’s wheelchair, tears were shed at photos of their long-time friend being sick and passing away.
Ee Kong’s passing highlights the unique challenges faced by individuals with intellectual disabilities and Down Syndrome. Down Syndrome, resulting from an extra copy of chromosome 21, presents distinctive physical features and often leads to developmental delays and health issues. Despite these challenges, proper support and interventions enable individuals with Down Syndrome to lead fulfilling lives. The unique characteristics of intellectual challenges pose implications and challenges in adulthood, emphasising the need for community understanding and support.
People with Down syndrome are especially attuned to their social environment. They are particularly aware and sensitive to their surroundings and are adept at picking up the feelings and emotions of others. This social sensitivity serves them well in various aspects of their lives, such as making and maintaining positive relationships with family, friends, students, teachers, and bosses.
However, there are downsides to this social sensitivity. People with Down Syndrome may be extra sensitive to negative feelings and emotions, such as criticism, sadness, fear, or anxiety. They may also be profoundly affected by these emotions experienced by anyone in their environment, even a stranger. This may limit their ability to filter these feelings on themselves and may lead to depression or other behavioural issues. People who have Down syndrome also have a higher risk of developing Alzheimer’s dementia later in life.
Navigating discussions about death with individuals with Down Syndrome, whose cognitive functioning is comparable to young children, can be complex. While there were uncertainties about the Y-stars’ understanding of Ee Kong’s passing, it became an opportunity to celebrate her life. Teacher Wei Shi emphasised the importance of sensitively approaching these moments and acknowledging the unique needs of individuals with Down Syndrome.
As a community, providing support and understanding and creating inclusive spaces for open discussions can help individuals with intellectual challenges cope with loss and sad moments. Emphasising celebration of life, fostering creativity, and facilitating communication tailored to their cognitive levels are essential in building a supportive environment.
Extra•Ordinary People is committed to providing accessible platforms for creative expression, like the Y-stars art classes, which allow individuals to process and cope with emotions, fostering a sense of community. Creating space for meaningful tributes and supporting alternative forms of communication can help bridge the gap and ensure that everyone, regardless of cognitive abilities, feels valued and included.
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