Her name is Pushpanjali, who came into this world on September 10, 1990. A young lady now, she usually spends her time at home, watching movies, dancing to Bollywood music and singing. She also loves playing with her petty dog, one of her best friends.
You might wonder how a young person like Pushpanjali can waste all her time doing nothing productive, and not making any meaningful contribution to the society and thus wonder why I propose her as Person of the Year 2011?
Let us start with her early life. Until she was four, Pushpanjali could not speak. Initially, she was mistakenly diagnosed with the ‘Tongue Tie’ defect. Only much later did the doctors realize she was suffering from Down Syndrome, a genetic disorder that affects millions of people all around the world.
Pushpanjali has a good memory and is interested in gadgets and electronic devices like camera, mobiles, and watches but no matter how hard she tries, she cannot recognize letters and numbers.
The children with Down Syndrome, in general, are cheerful, extremely sociable and good at making friends. They can be a little moody and stubborn though. They can easily connect with others and since they are highly sensitive, they care a lot about others. Unfortunately their learning and cognitive abilities are very limited, and they just can’t compete with other children even in the most basic tasks at school. Thus, if there is any one vulnerable group in Nepal that deserves special attention, it is the children with Down Syndrome.
There are few facilities to look after children with learning and cognitive impairments. Children with Down suffer disproportionately.
But can the Nepali society offer such a nurturing environment? Is there any system in place to provide enabling opportunities for children suffering from Down syndrome and others genetic disorders? Unfortunately, no.
Let’s consider Pushpanjali’s case again. She is very lucky to have a great family—loving dad and mom as well as a caring elder sister—who are all doing their best to help her in their own ways. The family has visited many schools and “special” centers to find a suitable place for her to study and learn new things. Pushpanjali has been in and out of the education system. At one time, she even attended a vocational school, but it made little difference.
Raising children like Pushpanjali at home is not easy. The vast majority of families in the Valley live in cramped quarters with poor water and sewage facilities. Just imagine one of their children also having some serious learning and cognitive disorder. What about similar cases outside the Valley? Some years ago while visiting Kavre to evaluate the status of Down Syndrome in the district, I saw children with the syndrome running naked and playing in the dirt. There didn’t seem to be anyone looking over them. Similarly, I have noticed such children all over the country.
Let us, for a moment, forget Nepal even exists outside the Valley. How many schools in the Capital can accommodate children like Pushpanjali? If not, don’t these children deserve an opportunity at personal growth and development? Why doesn’t the education system recognize their genuine needs?
It is upon the government to make the school learning process truly inclusive by living up to the spirit of the School Sector Reform, which, at least on paper, ensures inclusion and accommodation of children with various disabilities.
The state of children with Down is dismal. This is illustrated by the fact that there is no reliable data on the number of children suffering from Down Syndrome in Nepal. What we do know is that there are plenty of them. We see them everywhere: in parks, roadside, hospitals, everywhere. In order to mitigate this problem it is thus important that the families that are having a hard time supporting their children with various disabilities be given all the help they need. The few centers that do take in these children, on their part, deserve adequate government and I/NGOs support.
It is in order to get the attention of the government and other social/political actors that I propose a differently-able person like Pushpanjali be made the Person of the Year 2011.
simogal2000@yahoo.ca
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