This profile was prepared when Shila Thapa was elected to the Ashoka Fellowship in 2008.
The New Idea
Starting with Down’s syndrome, but with efforts that will have far-reaching affects across the spectrum of disability, Shila is changing the way mothers, families, doctors, and communities experience, understand, and ultimately improve the lives of their children with Down’s in Nepal. From 2005, in a country where a word for Down’s syndrome does not exist, Shila has reached out to parents, the medical community, and a network of citizen organizations (COs) working with disability, to make children with Down’s and their parents a vibrant, empowered community with the resources and education to improve the lives of their children and influence Nepalese society. Shila’s institutions, the Down Syndrome Support Center in Kathmandu and the rapidly expanding network of Satyam Day Care Centres around Nepal, have provided education therapy, medical care, resources, job training, and even employment for many Down’s children in Nepal. Parents are able to take advantage of a network of care and support, receive counseling and education, and even learn how to do physical therapies and other beneficial practices themselves. The community of parents, children, doctors, and nurses, that Shila is building has become an expanding network that provides opportunities not just to families of children with Down’s but to children with other disabilities and for non disabled families to learn and accept Down’s kids in society. As Shila lobbies the government of Nepal for support and the legal recognition of Down’s syndrome as a disability alongside her community building work, she is making the invisible visible. In the future, children and adults with Down syndrome will fully participate in Nepal’s society. Shila is determined to end the stigma attached to mothers of differently-abled children and their children by working with education and health professionals, as well as families. She finds champions among professionals and opinion leaders to lead the way.