Caught between survival and education: A mother’s dilemma

Chencho Dema

Punakha—“My daughter is 14 years old and has never set foot in a classroom,” says Kinley Sithup, 55, her voice heavy with emotion. “There isn’t a school nearby that can accommodate a child like her.”

Kinley’s daughter, born with a disability and autism, remains at home under her mother’s care—not by choice, but out of necessity. “I watch other children her age go to school while she stays behind. It breaks my heart, but what can I do?”

Jigme Dem was born with a disability that left her paralyzed from the waist down, unable to walk, and struggling with limited movement in her fingers. She also faces speech difficulties, making daily communication a constant challenge. Until the age of five, Jigme was bedridden, but after turning six, she began to move with some effort.

Despite the government’s efforts to promote inclusive education, Jigme Dem’s family, living in the remote village of Omtekha, Punakha, has been forced to prioritize survival over schooling due to financial hardship.

Punakha is home to two Special Education Needs (SEN) schools: Khuruthang Middle Secondary School, which serves 19 SEN students (12 boys and 7 girls), and Punakha Central School, with just one girl receiving SEN support. Meanwhile, across the dzongkgag, 85 children live with disabilities, 25 of whom are girls. Yet, for many like Jigme, accessing these schools remains out of reach.

These schools are far from where Jigme lives.

Omtekha is over an hour’s uphill drive from Khuruthang. The rough, difficult-to-navigate road adds to their challenges, making access to support services even more difficult.

Jigme requires constant care. She must be taken to the toilet and fed, although she tries to feed herself, often spilling much of the food on the floor. Her condition leaves her unable to manage basic tasks without supervision.

“What hurts even more,” Kinley said, her voice trembling, “is that my youngest daughter, Sonam Zam, had to drop out of school too”.

At just 12, Sonam has become the primary caregiver for her disabled sister, a responsibility too heavy for someone so young.

Sonam should be in school—learning, playing with friends, and dreaming of her future. Instead, she is at home, helping her mother care for her sister, caught in a situation none of them.

Kinley’s eyes fill with sorrow as she reflects on the childhood her youngest daughter, Sonam Zam, is giving up. “It breaks my heart that Sonam is losing her own chance at a better life,” she says, her voice heavy with regret.

Sonam was a student at Thinleygang Lower Secondary School before she made the difficult decision to drop out four years ago. She had just reached class two, having started her education in boarding school from class PP. Now, instead of pursuing her own dreams, Sonam is bound to the responsibilities of caregiving, a sacrifice no child should have to make.

With no school nearby, Sonam Zam had little choice but to attend a boarding school at a young age. The nearest alternative, Tshochasa Primary School in Omtekha chiwog, is a grueling three-hour uphill walk from her home, making education a daunting challenge.

“I wasn’t happy at school, being so far from my mother while she struggled to care for my older disabled sister,” Sonam recalls. “My mother had to work in the fields and still looked after my sister, and it became too much for her. That’s when I decided to leave my studies. I couldn’t bear to see her struggling,” she added.

Kinley Sithup is a mother of seven—five daughters and two sons. Except for Sonam and Jigme, who live with her, the rest of her children have their own families, while one son is enrolled in the monastic body.

Both Jigme and Sonam long to attend school, driven by dreams of education and a brighter future. Yet their difficult circumstances hold them back, the weight of responsibility and their harsh reality standing in the way of their aspirations.

Kinley faces a difficult choice. “While my daughters could continue their education, our livelihood is at risk,” she said. Khuruthang Middle Secondary School (MSS) is the only option for Jigme and Sonam, but the lack of boarding facilities means they would have to rent an expensive house nearby. “If I stay with them, there’s no one to work the fields at home. I can’t rely on my husband, as he’s often busy with carpentry and doesn’t support this decision,” she added.

Kinley is also uneasy about the idea of ​​her daughters living alone. “I don’t feel safe leaving them by themselves. I don’t know what to do,” she said, uncertainty clouding her voice.

For now, Jigme finds comfort in the companionship of her younger sister, Sonam, while their mother works the fields. Sitting in her old, worn-out wheelchair, Jigme is sometimes pushed around the village by Sonam, offering her brief moments of relief from the monotony of staying indoors. It’s a small escape from the boredom that fills her days.

The wheelchair, donated by Punakha Hospital five years ago, is in disrepair. Its metal armrests are worn out, and the overall structure is rusted. Although essential for Jigme’s mobility, the family cannot afford a replacement.

Most of the time, Jigme watches YouTube on her phone, and occasionally enjoys watching TV with Sonam. When she has questions, her younger sister patiently explains things to her, nurturing their bond and bridging the gap that Jigme’s condition often creates.

With tears in her eyes, Sonam expressed her dreams, weighed down by her circumstances: “I want to study and become someone in life so I can take care of my sister and mother, but the situation doesn’t allow it. The schools are too far away. If they were closer, I could study and still help my mother and sister. But right now, it feels impossible.”

Kinley’s elder brother, the Omtekha Tshogpa, shares the family’s sense of helplessness. Living on the other side of the village with his wife, he feels disconnected from the daily struggles of his nieces. “I just want to see both of them in school, growing up to be independent and capable in life,” he said quietly, sorrow lacing his words.

According to the National Health Survey, 48,325 people in Bhutan live with disabilities, representing 6.8 percent of the country’s population of 710,667. This figure only includes individuals aged five and above who self-reported their disabilities during the survey across the 20 dzongkhags. The actual number could be higher, as unreported cases and those under the age of five are not included.

Disabilities related to self-care affect 2.4 percent of the population, with hearing and mobility impairments each at 2 percent, vision at 1.8 percent, cognition at 1.5 percent, and communication difficulties at 0.8 percent. These statistics reflect the wide range of challenges that people like Jigme face daily, magnified in remote and under-resourced areas like Omtekha.

Education Minister Yeezang De Thapa recently announced that all schools would be made inclusive in the 13th Plan, aiming to address the educational needs of children with disabilities. Currently, 1,253 disabled children are enrolled in 44 schools across Bhutan in 2024.

The 2017 Population and Housing Census of Bhutan reported that 2.1 percent of the country’s total population lives with disabilities, equating to 15,567 individuals (8,111 females and 7,456 males). This reflects the broader challenge of ensuring access to education for children like Jigme and Sonam, whose futures remain uncertain.

As Kinley wrestles with the weight of her decisions, the future of her two daughters hangs in the balance. Each passing day leaves their dreams of education in doubt, casting a long shadow over whether they will ever have the chance to step into a classroom. The hope that flickers within them is slowly overshadowed by the harsh reality of their circumstances, leaving them trapped in a painful limbo.