Shila Thapa

Shila Thapa is educating, empowering, and preparing parents of children with Down syndrome to care for and raise independent children that realize their full potential. Mothers, freed from guilt, become the capable caregivers and advocates for their own and others’ differently-abled children.

Starting with Down’s syndrome, but with efforts that will have far-reaching affects across the spectrum of disability, Shila is changing the way mothers, families, doctors, and communities experience, understand, and ultimately improve the lives of their children with Down’s in Nepal. From 2005, in a country where a word for Down’s syndrome does not exist, Shila has reached out to parents, the medical community, and a network of citizen organizations (COs) working with disability, to make children with Down’s and their parents a vibrant, empowered community with the resources and education to improve the lives of their children and influence Nepalese society. Shila’s institutions, the Down Syndrome Support Center in Kathmandu and the rapidly expanding network of Satyam Day Care Centres around Nepal, have provided education therapy, medical care, resources, job training, and even employment for many Down’s children in Nepal. Parents are able to take advantage of a network of care and support, receive counseling and education, and even learn how to do physical therapies and other beneficial practices themselves. The community of parents, children, doctors, and nurses, that Shila is building has become an expanding network that provides opportunities not just to families of children with Down’s but to children with other disabilities and for non disabled families to learn and accept Down’s kids in society. As Shila lobbies the government of Nepal for support and the legal recognition of Down’s syndrome as a disability alongside her community building work, she is making the invisible visible. In the future, children and adults with Down syndrome will fully participate in Nepal’s society. Shila is determined to end the stigma attached to mothers of differently-abled children and their children by working with education and health professionals, as well as families. She finds champions among professionals and opinion leaders to lead the way.

Since there is no word in the Nepalese lexicon for Down’s syndrome, it has been impossible until now to conduct a survey to know the prevalence of Down’s syndrome in Nepal. Nevertheless, as Down’s syndrome is one of the most common genetic defects at birth it is likely that the rate of incidence is quite high. According to the Center for Disease Control, in the U.S alone, approximately 1 in 800 children is born with Down’s syndrome.

Despite how relatively common Down’s syndrome is, in Nepal it is not understood as a chromosomal disorder. Nepalese doctors and nurses are often not well informed and lack basic understanding of the symptoms; leading to tragic misdiagnosis. Often children are not properly diagnosed and never treated properly. As Down’s syndrome is associated with many serious physical problems (heart defects, poor eyesight, etc.) that demand urgent care, the lives of many Down’s are simply lost without access to relevant medical practitioners and counselors. Though even for those whose lives are not lost, the many therapies and practices parents can adopt for their children at home to help them develop happily and healthily are not understood by doctors and thus not accessible for parents to learn. Without a common understanding of Down syndrome in Nepalese society (by all citizens—doctors, parents, educators, and family), the perpetuation of stigma and the lack of appropriate care associated with the chromosomal disorder will persist, adding to the suffering of many parents and children.

Equally debilitating is the severe cultural and religious stigma attached to women who give birth to differently-abled children. Often the mothers are blamed for “imperfect” children and shunned by their families, in-laws, and husbands. Most parents interpret the disability as a curse and subsequently, out of shame, mothers isolate themselves and their children from society. The mothers of children with Down syndrome are discriminated against and ostracized, and in most instances, forced to withdraw from normal activities. It is socially accepted that it is the bad blessings of the Gods caused by the bad deeds in ones previous life that leads to disabilities.

With cultural norms pressuring mothers of children with Down’s to isolate themselves and their children, most Down’s children in Nepal are further disabled by their lack of exposure to other children and society. Since children with Down’s tend to mimic the behavior and development of those they are exposed to, it is important that they are in the presence of other children as often as possible to help them reach their potential. Unfortunately, in Nepal, mainstreaming in schools is rarely possible, with few schools willing to admit children with special needs. Kids with Down syndrome are viewed as retarded, dangerous, and even “mad”. Most Down syndrome children are forced to attend special schools along with children with autism, dyslexia, or who are physically and mentally challenged, thus limiting their ability to learn from the behavior of children without these challenges.

Shila realizes that she must mobilize different target groups—the medical community, parents, children with Down syndrome, schools, and the government—to change society on this issue. Shila employs a two-pronged institutional strategy by operating a support center and day care center, as well as partnering with other disability groups and lobbying the government of Nepal.

Shila realizes that no one cares more fiercely or will advocate the cause of their children better than mothers so she began her organization and grows it with them. Parents of children with Down syndrome are part of a membership organization, The Down Syndrome Support Center, which is rapidly becoming a model for other Nepalese disability groups. The membership organization facilitates the establishment of special centers for the proper treatment of Down syndrome. There is a strong focus on children and parent support groups with services to promote physical and social development, teach mothers how to do physical therapies, and empower them to confidently care for their children. In turn, the parents of children with Down’s have been inspired to open other Day Care Centers for Down’s children and their families. Mothers become both experts and volunteers passionate to spread the model and inspired by their children—initiating a new societal ethos for parents of disabled children in Nepal.

The support centre (managed by Down Syndrome Association of Nepal) is responsible for sensitization programs on Down syndrome amongst parents, medical practitioners, medical institutions, educational institutes, and the government. Shila educates the medical community for the essential early diagnosis and proper treatment. She informs professionals and the general public that Down syndrome is not a disease but a genetic condition. Shila also intends to initiate genetic testing and counseling (prenatal) centers as well. Many nurses now come to her centre to observe children with Down syndrome, since it is often the nurses closely observing newborn babies. With early detection, many children with Down syndrome would have better outcomes.

Through programs organized by the Support Center, Shila is creating spaces where children with Down syndrome and “normal” children interact and learn from each other, for example, on common playgrounds, parties, musicals, and sports events. She encourages families and society to celebrate these children and their talents. She builds on what they are especially good at, for example, if they are friendly and out-going, or love theater and music. She does not force activities, but develops their natural talents.

The support centre also provides counseling, orientation, and therapeutic services, to children with Down syndrome and their parents. Shila has partnered with specialized doctors in various hospitals to provide frequent check-ups to the children at her centre.

The support centre also runs a vocational training program for children over twelve-years-old to enable them to become economically productive members of society. Children are trained to become teachers’ assistants and staff of department stores. This inspires other children and sends a strong social message. Shila gathers numerous success stories of adults with Down syndrome who are managing businesses, marrying, or succeeding at work, and highlights them in the media and her monthly newsletter. Excitingly, young adults who have come through the Satyam Day Care Center and the Support Center are being employed as teacher’s aides in its kindergarten classes, while one seventeen-year-old has become a teacher—providing role models for both parents and children as they are able to support themselves (somewhat) independently.

Membership fees cover the cost of the centre for parents who can afford it; paying Rs.100 (US$2) per month or Rs.100 per year depending on their economic situation. The centre organizes public programs as a means to raise funds while increasing awareness by, for example, selling caps, t-shirts, and hats, and fundraising events. In-kind support is provided by volunteers who offer many therapies to the children while large organizations like the Rotary Club and Room to Read contribute equipment, books, donation boxes, and business-plan consulting to Shila. Rotary is building a specialized playground for Shila’s organization that is accessible to all children with disabilities. Shila is advocating for new legislation and awareness in the government to provide funding and ensure citizens with Down syndrome their full rights.

While the Support Center focuses on a wide variety of medical, advocacy, and education goals for parents and children, the Satyam Day Care Centre emotionally, physically, socially, and intellectually, prepares children with Down syndrome to become active, employed, contributing members of society. The centre works on an educational/therapeutic model and is sustained with the service fees charged to the parents who can afford its services and subsidize those of others. The centre provides Physiotherapy, an Early Stimulation Program, Occupational Therapy, Speech Therapy and routine vaccinations to the children. Shila’s organization also provides classes, music and art therapy, exercise, and other services to Down’s children.

Shila is replicating and expanding the day care centre to areas beyond Kathmandu in order to address the needs of people with Down syndrome in the rural communities. She finds champions in various professions and also includes celebrities and lawmakers in her awareness programs. A new development in Shila’s organization is the establishment of a trust fund to which parents of children with Down’s can contribute for their children’s medical emergencies and futures as adults as their parents grow older.

Shila’s board of directors is a very diverse and strategic one comprised of, among others, parents who are doctors and have children with Down syndrome. Shila is also in the process of developing an advisory group to provide additional direction and information to the organization. Additionally, she attracts occupational and physical therapists who volunteer their time regularly.

To effectively and efficiently spread awareness on Down syndrome, Shila works substantially with pre-existing networks around the country, ranging from mothers’ groups to disability organizations. She is also a member of the National Federation of Disability, which reaches every village. Shila advocates for a Nepali term/word for Down syndrome, so that the government will recognize it and allocate resources to it. She is also working to change policy so that Down syndrome is not lumped in with mental retardation and, in this way, hopes to ensure appropriate and early treatment followed by fair and full inclusion in society. Shila believes that a census of those affected by Down syndrome and a database with their information will provide a strong foundation for advocacy and action.

She partners with the media through FM radio stations and print media to highlight what kids with Down syndrome can do.

Born in Bajhang, Western Nepal to a middle-class family, Shila was one of three children. At the age of six, her younger brother died of meningitis. Shila believed that had her mother been educated, she may have been able to save her son. Her mother did not recognize the symptoms of his illness and he reached medical care too late. Even if the symptoms had been recognized early, the cost of treatment was beyond reach. This was a powerful lesson to Shila; mothers need information/education and access to care for their children. (Shila has taught her mother to read and her mother teaches her grandson.)

Shila’s childhood experiences influenced her aspirations to become a well-educated woman. She attended university in Delhi and studied economics because it seemed to provide what was needed to change society. Despite studying economics, Shila wanted to become a journalist, and hoped to find ways to write about the cultural, social, and religious challenges she saw around her and in her family.

After her studies, Shila married an army man, whose career demanded much time away from home. Their first daughter was born healthy and developmentally normal and her son Satyam was born in 2002. As her son grew, she noticed his developmental progression differed from his sister—he tired easily and had bluish extremities. After consulting with physicians, Satyam’s symptoms concluded to be caused by a cold; but Shila knew her son was developmentally different. She persisted and a doctor finally told her that her son may have Down syndrome. Connected to the syndrome, he also had a hole in his heart. The doctor predicted he would not survive. Since there was no treatment in Nepal, Shila and her mother-in-law took him to India where a specialist operated and Shila was able to learn more about the condition, Down’s support groups in India, and ways to raise her child to be as happy and healthy as possible.

Satyam lived and back in Nepal Shila tried to put into practice all she had learned in India about the constant stimulation her son would need to develop to his full potential. When a physiotherapist charged Rs 500.00 (US$10) for one visit with Satyam, Shila realized she could not afford the ongoing treatments. Determined, she enrolled in a physiotherapy course through a distance learning program. Her experience, course work, and compassion for children with Down syndrome led her to open a clinic strategically placed in front of a well-known Nepali government hospital. The clinic’s proximity to the hospital allowed her to connect with other parents whose children were affected by Down syndrome. She took computer classes to gain more in depth knowledge of Down syndrome, since little was available nationally. In 2005 she founded the Down Syndrome Support Centre—the first in Nepal.

She feels lucky to have a mother-in-law who is well-educated, lovingly supported her, and helped keep her child alive. Satyam is five-years-old and attends a day care centre along with other children. Her mother-in-law is investing her deceased husband’s pension in a trust fund for her grandson when he grown. Shila plans to expand the trust fund so it can cater to other needy children with Down syndrome whose parents cannot afford treatment. Shila believes that in a family, mothers should know things.