Except for the beddings, the room is bare. A 52-year-old woman, sitting in the corner of the room, opens a packet of potato chips. Her 17-year-old daughter extends her frail hands.
“She is learning to use her hands to eat,” says the mother. “Until now, she has been depending on me to feed her.”
The woman has to help the girl wear her clothes, take her to toilet. She has to do almost everything for her daughter.
This has been the routine for the mother for the last 14 years after her daughter, who was suffering from fever, lost consciousness.
“She was a healthy and beautiful child then,” says the mother.
She took her daughter to Trashigang hospital, then to Mongar and Thimphu. She even consulted local astrologers and lams and conducted many rituals. “But my daughter’s condition did not improved.”
The single mother of four from a remote village in Trashigang has been working as a roadside worker then. Because she did not have anyone to look after her daughter, she used to tie her daughter in the corner of the house. “My two sons were going to school then and I had to work to feed my children.”
A few years later, she left her work and went back to village to live on other’s land as sharecropper. She took her daughter wherever she went to work.
Seven months ago, her two sons got employed, one as a teacher and the other with Thimphu thromde.
“My two sons asked me to bring their sister to hospital,” she says.
Health officials in Jigme Dorji Wangchuk National Referral Hospital (JDWNRH) referred the girl to Ability Bhutan Society (ABS) a month ago. “It has only been 15 days since she began receiving daily living skills. She is learning everyday.”
The girl is among 82 children receiving services from Ability Bhutan.
A social worker with ABS, Pema Yuden, said the 17-year-old girl suffered from developmental delay, and because she is grown up, she is being taught how to eat by herself, dress and take care of herself.
Pema Yuden said many children with diverse abilities, especially in rural areas, are confined at home. “These children need attention and parents should avail of services for the children.”
In another case, a mother of three had to force her daughter out of school when the child could not cope with studies. She had communication problem and learning disability.
The Thimphu resident then availed of service of ABS where the daughter went rigorous speech therapy and other development skills. The girl was then enrolled back in the school and she is improving, behaviourally and academically.
The mother told ABS that she receives complaints from teachers about her daughter’s difficulty in coping with others and many parents compare their children with her daughter. “It hurts, but I accept that people don’t know what it is to deal with children with disabilities.”
ABS was founded on November 10, 2011 after recognising that persons living with moderate to severe diverse abilities, especially children and their families, have special needs.
Her Majesty Gyaltsuen Jetsun Pema Wangchuk is the royal patron of ABS and it functions as a project under the ‘Kidu Foundation’ established by Their Majesties as an endowment for Royal Projects.
ABS’s communication officer, Chey Chey, said the concept of ABS was conceived after families of children living with diverse abilities gathered to share their problems of loneliness and helplessness to explore ways and means to provide better life for their children, who are often left at home or with untrained caregiver.
The greatest challenge for people living with diverse abilities in Bhutan, according to the ABS executive director, Beda Giri, is early diagnosis and intervention. She said that children living with diverse abilities deserve support to access meaningful curriculum and in becoming a productive member of the society.
Chey Chey said research has shown that intervention for children with diverse abilities within the first 36 months of their life minimises and prevents delays in development of disabilities. “Early intervention can decrease the need for special education and related services when the child goes to school and increases their independence.”
She said that parents and caregivers are not aware of the importance of early intervention, which directly affects the child’s developmental milestones. “Many children registered with us are aged between 7 and 18 years.”
Chey Chey said that most Bhutanese families of children with diverse abilities lack access to information that would enable them understand the long process involved in stimulating, supporting, and promoting child development. “As a result, many parents are not seeking available services at the district level.”
The other challenge, she said, is that many parents expect immediate result within a short period of time. There is a difficulty in explaining that improvements require patience and consistency in using the services.
ABS officials say that children with diverse abilities also face stigma, discrimination, poverty and vulnerability to violence, abuse and neglect.
Chey Chey said that awareness programmes are essential to change the mindset and attitude of the community to create an inclusive society. “Only when children with disabilities are provided with opportunity to grow in a healthy, loving and supportive environment, can they reach their potential.”
Meanwhile, the 17-year-old girl’s mother says that while development is slow, she is hoping that her daughter can become independent one day. “If I die before her, she will suffer without anyone to look after. Through skills development, she can take care of herself.”
Ability Bhutan Society
Founded – 2011
Empowering individuals with diverse abilities to live independently and with dignity within Bhutanese society.
Enhancing the quality of life of individuals living with moderate to severe diverse abilities by:
Advocating and creating awareness of the rights of people living with diverse abilities in Bhutanese Society;
Developing core groups of dedicated, committed and trained Social Workers and care givers;
Enhancing families and care givers skills to empower those living with diverse abilities in their care; and
Providing direct interventions to enhance the capabilities of people with differing abilities
Tashi Dema and Tshering Palden