Kumari Magar accompanied by her husband, Milan Kumar Magar never gave up going to different hospitals outside their village in the hopes to cure their son, Kiran Thapa Magar of blindness.
Hailing from a remote village in Okhaldhunga District of Province 1 of Nepal, Kiran was born with blindness, in 2010. Now living in Kathmandu, Kumari remembers her village being very remote, where no vehicles could be sighted and the community very conservative at that time.
Kumari faced major discrimination in the family and community after Kiran’s blindness was discovered, soon after birth. Everyone blamed her, claiming that his blindness was a result of her past life sins. “What’s the use of having a blind son. You should just stop breastfeeding him so that he dies,” were some of the insensitive remarks Kumari heard. “No one in the family or community provided physical, moral or emotional support. They refused to hold Kiran and often mentioned that Kiran’s older sister, who is sighted, should have been blind instead of him. This is a blatant example of existing gender discrimination and strong bias in favor of sons in Nepal and other developing countries.
In 2015, an eye hospital in Lahan of Siraha District in Province 2, sent Kiran to Tilganga Eye Hospital in Kathmandu. The doctors in Kathmandu advised his parents to focus on their son’s training and education, his vision loss being permanent. Kiran was referred to B.P. Eye Foundation’s(BPEF) Hospital for Children Eyes ENT and Rehabilitation Services(CHEERS) in Bhaktapur.
Kumari was disappointed that her son’s eyesight could not be cure but pleasantly surprised that he could receive an education. After a comprehensive health evaluation and assessment to identify Kiran’s medical and educational needs at BPEF-CHEERS, he was admitted to the Enabling Center( Rehabilitation Unit) of the Hospital for training.
Kumari was very pleased to know that besides children, family members (like herself), Caretakers of Early Childhood Development Centers(ECDCs) and inclusive schools, school headmasters and resource teachers are also given training on caretaking of children with disabilities at the Centre, at home as well as in schools. This is an important component of the Rehabilitation training. She observed different kinds of rehabilitation services through audio visuals, literature and hands on experience which was provided to her child in the company of other children with similar disability, and/or multiple disabilities. Even at that time, the community back home was critical of Kumari’s decision to take her son for Rehabilitation, doubting that such a child could receive education and training.
Despite financial hurdles in a city far away from home, Kumari was determined to make Kiran’s life better. Regardless of the negative attitude of her other family and community members, she went ahead.
Kumari stayed only for a week at the Center, even though she was offered to stay longer. She commuted to and from the Centre with Kiran every day, working as a daily wage worker, domestic help and doing odd jobs to pay for a rented room, close to the Centre. Since Kiran would be eventually living at home with his family, this was a very good decision on her part.
Although he could talk, Kiran did not interact or socialize with anyone at the Centre for the initial six weeks. Later, in the company of children with multiple disabilities, he received training in behavioral, orientation, mobility, motor and sensory skills, as well as speech therapy. He quickly picked up other daily life skill activities such as dressing, undressing, brushing teeth, washing hands, eating and toileting. He started interacting with other children soon. A keen listener, he grasped things easily. On observing the changes and progress in her son, Kumari was speechless and could not hold back her tears of joy. As part of the training both Kiran and his mother were provided with psycho social counseling which helped build Kiran’s confidence as well as provided tips to Kumari on accepting her child’s disability.
The news of Kiran’s training and progress spread to his village. One of the disbelieving neighbors even visited the Rehabilitation Centre to observe how children with blindness could learn and study. He could not believe his eyes. When the community saw Kiran interact with them during one of his visits, they were stunned. They acknowledged to being wrong and changed their earlier negative views.
Kiran graduated from BPEF-CHEERS and got admission in the Resource Class of Namuna Macchindra Secondary School in Lalitpur, in 2016 with a recommendation from the Education Department of the Ministry of Education. In 2013 children with blindness below six years were allowed to be enrolled in in ECDCs and pre -primary schools for the first time in Nepal. This led to signing of a Memorandum of Understanding with the Department of Education, in 2014, leading to a policy change which allowed a such children to be admitted into schools without waiting for that window period beginning of the new academic session.
Kiran’s, mother says there was an in-between period when Kiran was not performing well, when staying at a private hostel. She took him out and kept him with herself. “He stopped talking, performing well in school and even doing his daily living activities which he had learned at BPEF-CHEERS. Kumari thinks he was too young to be in the hostel. “I worked hard on him at home, encouraged him to study and talk as his interaction had completely reduced. He even repeated a grade. Although He is an average student, a little weak in English, I am happy with his progress now. His older sister (sighted) helps him with English. Both siblings go to the same school,” remarked Kumari.
Many children like Kiran have benefitted from USAID and other donor supported projects for training of children with blindness and visual impairments at the Rehabilitation Centre if BPEF-CHEERS. Up to now, 283 children (Male: 173 and Female: 105) have been identified and referred to BPEF CHEERS. Out of the 188 graduated, 184 were enrolled at schools and 134 are currently studying in different schools in Nepal.
Kumari is now working at Bigmart, a popular Supermarket in Kathmandu, proudly admits that she makes NPR 12,000 a month and is somehow managing to support her children.
Kiran is now studying in Class IV in the same school. “I want to be a Radio Jockey when I grow up”, said Kiran. This is in addition to his earlier dream of becoming a teacher for chil