KATHMANDU, Jan 18: She has a clear rough patch on her right cheek that looks like a skin disease. But this three-year-old mark is not a disease but 'a gift by a small boy with autism'. He simply came around, badly bit her and did not feel sorry. One day, exhausted, she was in a deep sleep and another boy peed on her ear and vanished. She was vomited on her neck, put feces on her hands and legs, and thrown into weirdest troubles.
You cannot easily understand what next a child with autism will do, and this remains true even for Sabita Upreti, whose world has centered around special kids for over a decade. She has tolerated a lot for them, and her dreams to make children with autism noticed, recognized and accepted by families and the state has now begun to spread wings.
Upreti is not autistic, and never encountered a person with mental disorder until she came to Kathmandu at 16. But she felt connected as 'there was something in common between the neglected, deserted children and herself'. 'A deep sense of pain'. "The difference was, they could not express their feelings, and I could express them, if I wanted to. Actually their life looked miserable than mine; and I had a different perspective about life then," explains Sabita while narrating about the drive behind her different journey in life. "They gave me a positive outlook about life; they also gave strength to keep moving."
Sabita was born in 1984 in a far flung village in Dolakha. Her birth was not celebrated as nobody expected a girl child in the family. That was so even when she already had a brother. "My mother wanted to kill me inside her womb fearing that she might give birth to a baby girl. Even after my birth, she was not elated, as nobody else was at ease. And she had this deep belief that her daughter's life could be just like hers," she said.
Sabita's mother Bhawani came from a decent family. But soon after marriage, her husband found her 'not so beautiful' and her in-laws were not impressed by her demeanors. Sabita's grandfather was a village chief (Pradhanpanch) and the Upreti family had a name in the village. But her father was the poorest among siblings, and this worsened over the years.
"We saw extreme hardships during childhood. My mother used to lock us up inside a room and go to work for long hours. We would starve and there wasn’t enough food. But of all, what would really pinch me was the way my mother was treated. She used to hide her pains and try to cover the hollow pride of the Upreti family," Sabita recalled.
Life Back On Track
Sabita was a seventh grader when her marriage was almost arranged. But her mother, who earlier thought females are rather meant for a cursed life, had however begun to see a ray of hope in the eyes of her daughter. Sabita was the most sensible and hardworking among the four siblings. She 'protected' her.
"I was very close to my mother. I would give her hope. Over time, she developed more confidence in me than I had about myself. She is the one who let me study, sent me to Kathmandu and always stood by my side."
The mother-daughter bond was profound. They still often talk of the time when Sabita left for Kathmandu with a Thaili (typical Nepali handbag) with just five rupees and a flower (symbol of a blessing) that the mother gave her.
"A cousin in Kathmandu needed someone to babysit his newborn. I came to help them and to join college. I then found a job at a private school that paid me 2,100 rupees per month," she reports.
Sabita came to Kathmandu after SLC in 2000. The 'rude city' taught her even the toughest lessons. "When you are an outsider and poor, your dignity is always at stake, your dreams can shatter and sometimes you cannot recollect them," Sabita recalls those bitter days. She struggled to pay rents, manage expenses and keep pace with life. Meanwhile, she had also brought her younger brother and sister to Kathmandu for further studies.
"I would often walk from my workplace to save money. Saving ten rupees meant money for vegetables. Even buying a pin for stove was not easy sometimes. I didn’t have a rupee."
Her life turned around when she was hired as a management officer at the National Disabled Fund in 2008. During field visits, she came to know people with disabilities. A boy in Bhaktapur changed her course of life forever.
"I saw him in a slum area. He was naked, stinking, eating his own feces. His parents were not able to look after him due to poverty. That scene kept haunting me. I started to see how fortunate I am. At least I knew who I was and what am I supposed to do," Sabita reminisced.
Many such cases moved her. Most of the parents did not even know that their kids had autism. They would smash things, show abnormal behavior, look untidy and vulnerable, but smiling. The situation of such people outside the Valley was even worse.
"My heart was heavy. This deep desire to bring their problems to the fore and ensure their welfare motivated me."
Sabita went to India for training on handling people with autism. With some like-minded friends, she founded Special Education and Rehabilitation Center for Disabled Children (SERC) in 2009. She then established Special School for Disabled and Rehabilitation Center (SSDRC) in Bhaktapur the next year. Since then she 'hasn't had time for anything else'. "Many children have given me love; they are dear to my heart. I don't think I can live a different life by getting married."
Her organization offers therapies and other activities during the day for children with autism and parents make contributions to her organization. People who have seen and appreciate her work donate. Sabita has already taken steps ahead to expand her center to two other areas.
In the last decade, she has visited a number of countries to exchange knowledge about autism and bring home better experiences and voices for autism centric issues. For her dedication, she has earned dozens of awards including Janasewa Shree Padak by President Bidhya Devi Bhandari. As per the World Health Organization, one percent population in any given size suffers from severe autism. It is estimated that around 300,000 people in Nepal are living with autism.
"Due to our efforts, the government recognized autism as one of the disabilities; other policies are in the pipeline. In the next census, we will have data on autism in Nepal," Sabita said confidently.
"When trained people handle children with autism, their performance improves. But the first step is identifying the problem, accepting them with an open heart and then facilitating them in their life. We have to think especially for special people," she noted.
