“There was a child at the center who was buried by his own parents in the backyard,” said Allen Bailochan Tuladhar, Country Director of the Microsoft Innovation Center Nepal. He shared this after his recent visit to the premises of Self-help Group for Cerebral Palsy (SGCP) with the youth participants of Microsoft Student Partners (MSP) programme.
While the infant was later rescued by his grandparents, others have faced worse fates. In Nepal, it is common for parents of children with cerebral palsy to abandon their children “when they realise it is a health condition that cannot be treated, but has to be lived with,” Allen added.
While Nepal has been successfully reducing poverty, social and welfare services are wanting, including those for people with cerebral palsy, who number around 80,000.
Twenty-six years since it opened in Kathmandu Valley, SGCP remains the only organisation in the country to be dedicated to the rehabilitation of children with cerebral palsy. People with cerebral palsy are “much neglected, and their plight is almost beyond description”, said SGCP in an appeal letter. It’s a “hidden catastrophe”.
MSP students interacting with the children at the SGCP centre
Stigma worsens the situation. There remain strong beliefs that disabilities are due to sins in past lives, and to fate, preventing Nepali parents from accessing appropriate healthcare for children with disabilities. Rural folk also believe that a child is born with cerebral palsy because the mother was possessed.
“The father would abandon the mother and child, making it even more difficult for the mother to provide for the child,” Allen wrote. “In such cases, these children would be caged up, left with food and water and only visited occasionally.”
Girl with cerebral palsy experiments with a tune
SGCP’s long history of providing rehabilitation, counseling and special education for children and adults with cerebral palsy has also seen new grassroots organisations turning to it for support.
Working with SGCP, MSP students decided to give voice to the inner worlds and realities that the 38 children at the centre occupy, as well as raise funds for its wide remit of work. They will apply their skills in digital media by launching a social media campaign this November. To prepare for this, they visited the centre with Allen in July where they observed healthworkers and teachers at work, attended painting classes with the children and interviewed parents.
Ambika Maharjan, currently a sixth-semester student at St. Xavier’s College of Tribhuvan Unviersity, said, “I really wish I could do more for them, especially for the mothers who, as women here, are less empowered economically. But a friend reminded me that ‘no act of kindness, no matter how small, is ever wasted’, so I am happy to contribute whatever skills I have, which are currently photography and blogging.”
The visit was also significant for providing Ambika the opportunity to “translate the children’s lives into stories that flesh out their hopes and fears, and talk openly about their needs”.
Great job sister...I'm proud of you for using your skills to improve the lives of people with disability.