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.
Kiran was born with blindness in a remote village in the Okhaldhunga District of Nepal’s Province 1 in 2010. Kumari, who now lives in Kathmandu, with her two children, recalls her village being very remote, with no vehicles and a conservative community 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,” mentioned Kumari. This is a blatant example of existing gender discrimination and strong bias in favor of sons in Nepal and other developing countries.
In 2015, Kiran was referred to Tilganga Eye Hospital, Kathmandu by an eye hospital in Lahan of Siraha District in Province 2 of Nepal. The doctors in Kathmandu advised his parents to focus on their son’s training and education, his vision loss being permanent. Thereafter Kiran was referred to B.P. Eye Foundation(BPEF)’s Hospital for Children Eyes ENT and Rehabilitation Services(CHEERS) in Bhaktapur, Nepal.
Kumari was very disappointed that her son’s eyesight could not be cured 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.
Kiran’s mother was pleased to know that besides children, family members, caretakers of Early Childhood Development Centers (ECDCs) and inclusive schools, school headmasters and resource teachers could also given training on caretaking of children with disabilities at the Enabling Centre, at home as well as in schools. This is an important component of the rehabilitation training. Kumari observed different kinds of rehabilitation services through audio visuals, literature and hands-on experience which were 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. She stayed only for a week at the Enabling Center, despite being offered a 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 Rehabilitation Unit 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, Kiran grasped things easily. On observing the changes and progress in her son, Kumari was speechless and could not hold back 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 Unit to observe how children with blindness could learn and study. He could not believe his eyes. When the community observed Kiran interacting with them during one of his visits, they were stunned. They acknowledged being wrong and changing their earlier negative views.
In 2016, Kiran graduated from BPEF-CHEERS and was admitted to the Resource Class of Namuna Macchindra Secondary School in Lalitpur, Nepal with a recommendation from the Education Department of the Ministry of Education. The year 2013 had been a game changer for children with blindness below six years of age. BPEF-CHEERS’s advocacy with the government of Nepal led to the enrollment of children with blindness in Early Childhood Development Centres (ECDCs) and pre-primary schools for the first time in Nepal. This was followed by the signing of a Memorandum of Understanding between BPEF-CHEERS and the Department of Education in 2014, leading to a policy change that allowed such children to be admitted into schools without waiting for that window period, the beginning of the new academic session.
However, all was not smooth sailing for Kumari and her son. There was an in-between period when Kiran was not performing well while staying at a private hostel. “He stopped talking, performing well in school, and even doing his daily living activities which he had learned at BPEF-CHEERS,” stated Kumari. She removed him from the Hostel and kept him with herself. She thinks Kiran was too young at that time to be in the hostel. “I worked hard on him at home, encouraged him to study and talk more, because his interaction had altogether decreased . 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, who is sighted, helps him with English. Both siblings go to the same school,” she remarked.
Many children like Kiran have benefitted from USAID and other donor-supported projects for the training of children with blindness and visual impairments at the Rehabilitation Unit of BPEF-CHEERS. Over 300 children have been identified and referred to BPEF CHEERS for training so far. A large number of children graduated, were enrolled at schools and are currently studying in various schools throughout Nepal.
Kumari, 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 both her children.
Kiran is still at Namuna Macchindra school studying in Class IV. “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 children with blindness.