Kalpana – Child Protection against Diseases | Leher NGO in India | Child Rights Organization

Till about 15 years ago, Devagram village was known for its delicious apples. The famous Kalpeshwar temple is a 30 minute trek from there. Here in the notoriously remote Urgam valley, nature has not left much for imagination, the place is, as they say ‘picture perfect’, with a gushing river, stepped valley, low hanging clouds and not so distant snow- capped mountains. People in this valley depend on agriculture and the prized Keedajadi for making a living. The place makes you feel serene, and hopeful. It infuses you with extraordinary joy.

Urgam valley is idyllic and amidst this paradise we met Kalpana, a gritty and intelligent 11-year-old girl. Kalpana Singh Negi didn’t see the fury of the Uttarakhand tsunami with her own eyes. She couldn’t because she is permanently blind. I met her at her home in Devgram village after it took me and my colleagues nearly 2 hours of driving on dangerous kutcha roads and another 45 minutes of walking on a narrow foot-trail to reach her home. Devagram is located in the picturesque but notoriously remote Urgam valley.

When Kalpana was 9 years old she complained of severe headache which didn’t abate even after 6 days. Her father who had then recently remarried took her to Srinagar for treatment in a private hospital. Arvind Negi, Kalpaná’s uncle told me that, “Doctors in Srinagar could not diagnose her illness properly and we wasted crucial time there. By the time we took her to Dehradun, Kalpana could not see and was in excruciating pain.She would cry all the time. We decided to take her to the Himalayan Institute of Medical Science in Dehradun, the doctors there diagnosed her with Tuberculous meningitis and declared her permanently blind”. This was in 2012. Since then, little Kalpana has become used to living without eyesight. When I ask her questions like, “Do you feel bad that you cannot read and write anymore?”, she grits her teeth in irritation and tersely says, “Jee, I feel bad”. I ask her another insensitive and avoidable question.“Which grade were you in when you stopped going to school?” She ignores me completely this time, and starts playing with her cousin Kanishka whom she adores a lot. Her silence wakes me out of my nonchalance.

Cradling Kanishka in her arms, she starts walking away from us. I call her and introduce myself as Daku Singh (Daku means dacoit in Hindi) –with a big beard, she smiles and stops. I am encouraged. I ask her if she would like to listen to some songs on my phone. Upbeat already, she tells me to play a recent Bollywood number- “Tu ne maari entry yaar, dil mein baji ghantiyaan”- this time, it’s me who can’t stop grinning. The ice is broken. I tell her I don’t have that song but there are several others. I feel humbled by how little Kalpana is trying to make me feel more comfortable.

Kanishka loves that ‘entry’ song”, she tells me and carries off the phone and her baby cousin towards the little garden in front of their house.

Kalpana – Child Protection against Diseases | Leher NGO in India | Child Rights Organization

Tuberculous meningitis starts with nonspecific symptoms and is often only diagnosed when brain damage has already occurred. But if diagnosed in time the damage to the body and sensory organs can be mitigated if not prevented. In Kalpana’s case, the diagnosis was both wrong and delayed for which she paid with her eyesight. Save the Children, an NGO working for children met Kalpana in the
aftermath of the 2013 Himalayan Tsunami. The NGO helped her grandfather take Kalpana to All India Institute of Medical Sciences in Delhi. The doctors in AIIMS also confirmed that Kalpana cannot see ever again. Kalpana had tried attending her village school which she had stopped going to because of her illness. She found it easy to navigate the broken and steep foot trails to reach the school with other children but once in school, she faced many difficulties. Like in most schools in India, the infrastructure to cater to the needs of children with special needs is abysmal in Uttarakhand as well.

In Uttarakhand, this situation is worsened by the difficult terrain as most villages are on mountains and accessible only on foot. When Kalpana had strived to continue studying with her friends despite complete loss of vision she had displayed immense will to study, but within a few months, she herself stopped going to school because the teachers were not trained to help children like her, there was sympathy but no special materials like Braille-aids to help her continue her education.

It is ironic and indescribably sad that Kalpana has been out-of-school despite being a bright kid who craves to go to school and study. The 2012-13 NCERT study on children with disabilities had revealed that while 99 per cent of these children liked attending regular schools but 57 per cent of teachers were not trained to understand their special needs.

Last June’s floods caused extensive damage to houses and washed away many fertile fields leaving the people who live in this valley cut-off from the rest of the world for almost a year. Although indirectly, since Kalpana was already declared permanently blind by doctors, poor access to already abysmal health services, did have an adverse impact on her medical treatment.

Road connectivity to Urgam valley has been restored only two months ago and it remains at the mercy of good weather. Till May this year, the only way to reach Kalpana’s village was to trek for 14 kms on a narrow mud trail. In the last one year the government has managed to build new patches of roads and clear the massive boulders that came tumbling down mountains slopes. But life remains a weary challenge for the people of her village and other communities living in Urgam valley.

For little Kalpana, life has thrown a challenge much bigger than floods. But she tells me as I say goodbye, “I am okay, don’t worry about me”. I shake her hand, mumble something half-funny and leave thinking I can’t even imagine what she goes through and yet shows so much strength and resolve. “I am sure you will be more than okay Kalpana”. (Kalpana means imagination in Hindi).

Kalpana – Child Protection against Diseases | Leher NGO in India | Child Rights Organization
Photo Credits : Valay Singh

Words By : Valay Singh

Valay Singh


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