Bishal Rai

“It takes a village to raise a child”, goes an old African saying, implying a child requires a safe and healthy environment to develop and flourish that is collectively contributed by all.

But for sure, it takes stronger and patient mothers to raise children with disabilities, which, today, has come to occupy a rare women-dominated area of expertise in Bhutan.

More than 90 percent of the parents who are taking care of their children with disabilities full time are mothers, says Prashanti Pradhan, a founder and the Executive Director of Phensem Parents Support Group, a CSO of parents of children with disabilities.

It appears, almost all the 150 families that the CSO has reached in the past two years, from Thimphu, Paro, and Gelephu, had the mothers giving up their jobs – from senior executive level positions in the government to secretarial task in a private firm, to take full responsibility of their child with disability at home.

It is not just a loss of income for the household, but a loss of financial independence, self-esteem, worth and value, says Tandin Wangmo, 35, a mother of a 16-year-old daughter with mild-autism.

However, not to put the blame entirely on men folks though, it apparently also points at the mothers’ natural call for nurture that instinctively made them push away their men when it came to caring and responding to their children with disabilities.

“I could not trust my husband to provide the necessary attention and care required for our child,” says another mother, not wishing to be named.

The child has to be positioned correctly – whether in sitting or lying – not to further complicate the disabilities, has to undergo physio-activities consistently, and a lot of patience to understand what triggers tantrums and what helps calm the aggressions, she added.

“Watching television together for hours is not exactly providing essential care and support for a child with a disability.”

To be fair, the men were supportive. They ran errands, took leave from work to relieve the mothers from burnout, and provided a helping hand whenever asked for. Unfortunately, some also took the decision to separate, and went away.

But the fathers’ roles became more visible, even necessary, as the child grew up. Trying to calm down an 18-year old throwing tantrums is physically not possible for a mother, pointed out Prashanti Pradhan. As the child grew up, albeit physically, it was also inconvenient for the mothers, or fathers, to support in other day-to-day living, such as in maintaining hygiene.

The parents of the children with disabilities, and even family members, worked towards a common goal of enabling the child to become independent and so they too could live with dignity. The caregiving role shifting from mother to father, or vice-versa, with the physical development of the child, however, did not contribute towards it.

The parents take a long time to accept that their child has a disability, similarly, the children find it difficult to accept and come to terms with his/her disabilities as they start growing up, says a parent.

“They find it humiliating that they have to depend on others for anything and everything,” she said.

As a result, a growing child with disability was often withdrawn, responded only when spoken to, and was even violent. They were intelligent, such as a 14-year old boy with cerebral palsy, who learned to play chess by watching it online and playing against a computer. Some were creative, like 17-year old Karma Namkha Lhamo, who sang Bhutanese songs far more melodiously than what has been heard.

Of late, there was also a renewed hope and excitement on the prospect of the use of assistive technology to enable children and persons with disabilities to live more independently, ease burden on the caregiver, and even help children with disabilities accept their own disabilities.

The technology and innovation was being acknowledged as a driver across the ecosystem – from early diagnosis to generating employment for those with disabilities, said Director of Bhutan Foundation, Norbu Dema.  The foundation is supporting Phensem Parents’ Support Group to leverage the use of assistive technology to overcome existing barriers, enabling those affected to live more independently, and purposefully, she added.

A collaborative approach would be implemented – with Fablabs and innovators in country and abroad, to develop and provide a wide range of assistive technology from simple innovation to high-tech devices, said Prashanti Pradhan.

The promise of technology and innovation is beyond enabling children with disabilities to learn and play, like their peers without disabilities. It is expected to drive employment and livelihood when they grow up, an opportunity that was severely lacking at the moment.