While waiting to hear if doctors would agree to operate on her young son, which had just been diagnosed with a life-threatening heart condition, Shila Thapa made a promise to God. "If God saves his life, I will start working for Down Dyndrome," Shila vowed. Luckily, her son survived the open heart surgery, and Shila kept her commitment. Now, nine years later, the 41-year-old is the President of Down Syndrome Society in Nepal, and a fervent advocate for the rights of persons with intellectual disabilities.
Shila's dedication to improving the lives of people with disabilities all started with her son, who was born with Down Syndrome. "My son completely changed my life," Shila said. The woman, who had never worked outside the home before her son was diagnosed with the condition, remembers finding out about her son's disability. "There was no possibility for him to be properly diagnosed in Nepal, so we had his blood sent to India for testing," she recalls. Had he been diagnosed earlier, his heart problems could have been identified and resolved without putting his life at risk.
When a child is born with a disability in Nepal, the mothers are generally the ones blamed for it. As the concept of intellectual disability is not widely understood in Nepal - Shila is even fighting to get the name recognized - the stigma surrounding children with disabilities and their mothers is often debilitating. "Husband leave their wives when they give birth to a child with a disability," Shila said. "I was told by people that I should have another boy, a healthy one," she added. Fortunately, Shila's family was always extremely supportive, which greatly aided her in achieving her dreams. "I didn't feel like they ever blamed me," Shila said. "They feel proud, they are so happy to have my son." she added.
It is Shila now supporting and counselling other parents of children with intellectual disabilities, building their confidence and helping them see the potential in their children. She has met with more than 300 parents so far, who are always inspired by the happiness and joy of the children who participate in the activities of Shila's day centres.
In her centre in Kathmandu, Nepal's capital, 31 children are educated based on the Montessori method, which supports the development of important life skills, and respects each child's unique abilities. While Nepal has ratified the United Nations Convention of the Rights of Persons with Disabilities and has polices that are formally geared towards inclusion, Shila quickly found the actual situation to be much different. There was no educational material adapted to the needs of children with intellectual disabilities, teachers were not trained in helping disabled children, and there were no extracurricular activities available for them. Moreover, some parents would not let their children play with her son. "It was mental torture," she recalls. Many children with disabilities in Nepal not only receive no education, but are often locked up in their rooms the whole day, or even kept in cages while their parents, most of them farmers, are at work.
Shila is now fighting to change all this. She is currently planning to open day centres in five more districts in Nepal, which, among others, will involve children over 15-years-old in vocational therapy and help them find work. "There is a 5% quota for hiring people with disabilities in Nepal, but I don't think people with intellectual disabilities can fill this quota now," she said. With the proper support and training, however, she is sure they will be able to do so in the future.
While she acknowledges how difficult is is to sensitize people and to raise awareness about intellectual disability in Nepal, Shila sees some positive change. "The situation has been better in the last 5-10 years, with organisations such as Inclusion International getting involved." However, there is still a lot more to be done until the right-based approach becomes more than just wishful thinking. Shila, for one, is staying positive. "Maybe in the future, we will see inclusion in action, not just in theory." For now, she is working to get doctors to champion the cause of intellectual disability and to raise as much awareness as possible. "We feel doctors are like God, and whatever they say, it is true,' she said. " People here think Down Syndrome is a disease. It has associated problems, but it is not a disease," Shila added.
In the future, she would like to see children with intellectual disabilities work and live independently in the community, surrounded by their peers. "If people with intellectual disabilities find employment, their families' attitude will also change, and they will not be seen as a burden anymore," Shila believes. "It is also better for mothers, as their will not be blamed for having a child with a disability."