– when you see what others haven’t
By: Rita Tisdall and Johnny Baltzersen
“SEE IT” was the headline, underlying philosophy and methodology of the course that kicked off our project in Helambu: Better Life – Education & Keeping Children Safe . Eight field workers went to the villages and stayed for two months. Eight weeks of watching, observing and talking to people. They took no iPad, no cell phones, not even notebooks with them when they met the villagers. In groups of two, they observed, talked to people, drank tea and wrote their diaries in the evenings.
They gained tons of new knowledge. And THEN, what no one else had seen before them. Namely, that 32 children with severe disabilities had never received any kind of help.
Disability in Nepal is deeply linked to poverty. 60% of disabilities in the country are actually preventable. In Helambu, disability is particularly associated with poor prenatal care and alcohol abuse. In one ethnic group, women drink during pregnancy without knowing that it harms their children. During the visits to the villages, the field workers found 104 children with fatal alcohol syndrome.
Dawa is a 12-year-old boy. He has cerebral palsy (spastic paralysis that prevents the brain from controlling muscles normally) due to his prolonged labor. The two young field workers were referred to Dawa’s house by his aunt, with whom they were staying. They found him in the dark, dirty buffalo barn where he had lived most of his life. Paralyzed and unable to chase the rats away, his ears were infected with rat bites.
“Hands-on” or shared practical work and experience is a key element of our approach. The outreach field workers stayed in the village. Today, Dawa lives inside the house. He gets specially prescribed protein-rich food. He smells good because his mother massages him every day in the sun with hot mustard oil, a traditional treatment that mothers in Nepal give their young children. Before, she was afraid to touch him.
No one knows yet how much Dawa understands, but when he sits in his chair outside and people walk by, he lights up and laughs loudly, following people with his eyes. His mother, Maya, is truly dedicated to her son. Misled by old myths and prejudices, she simply didn’t know what to do.
In Nepal, a law has recently been passed that stipulates that parents like Maya can be prosecuted for neglecting their child, as she did.
We are committed to working from a rights-based approach, to advocating for children’s rights to care and protection and to supporting the implementation of laws that promote these rights. But we also want to show solidarity in the encounter between people and promote understanding between people. How can we expand on these challenges that weren’t obviously embedded in the original project design?
Resource Center for Rehabilitation and Development, RCRD, is an old, seasoned organization that has spent 22 years supporting families with disabled children in their communities, and we invited them to collaborate. Three of their field staff have now joined the outreach teams. They will live and work alongside our original field workers for the next 20 months, targeting disabled children and their families.
Parents’ self-help groups are being set up throughout the municipality. A dedicated disability support office is being set up in the same building as the Lord Mayor’s office. “We didn’t know it was this bad and we don’t have the knowledge to support these children,” says Lord Major.
The new disability-focused person who will lead the help center will receive training from RCRD. There is a huge gap between good national legislation and the local reality where good intentions need to be put into practice.
Last week, CICED and RCRD were invited to a meeting with the National Council for Children’s Rights. The Council is the highest government entity mandated to promote and advocate for legal, policy and programmatic actions that advance children’s rights throughout Nepal. They appreciated the approach and depth of the Helambu project. They decided to form a subgroup consisting of two board members from the council and two employees from our project to follow and document the activities in Helambu in order to promote understanding of the lived reality and the new national laws.
Back in Helambu, the new school year starts soon, Dawa will initially only attend school one day a week – slowly, slowly Dawa we will all learn to hear Dawa’s voice, his wishes and bring them to the higher places of influence. So far, it looks like he has a better life!
From right: Shusma Pokhrel, RCRD Board Member; Surya Bhskta Prajapati, Director, RCRD; Rita Tisdall, CICED; Ram Bahadur Baniya, Vice Chairperson, RCRD; Indradevi Dhakal, Chairperson; and Binita Kadka, Disability Liaison Officer, Ministry of Women and Child Development.
