Braving the odds: Parents of differently abled children in Keralam search for a bright spot

Subscribed with another email? Logout and Login with that one. Differently abled children and their parents need a lifetime of support at various stages of their lives. | Photo Credit: K. Ragesh A dilemma rattled Rani Mahesh*, a native of Koyilandy in Keralam’s Kozhikode, when her husband was admitted to a private medical college hospital in the district for treatment a few years ago.

She wanted to be with him. But her only child, who has cerebral palsy, could not be left alone at home. “Worried about who would look after her, I couldn’t stop crying on the bus while going back home from the hospital that day.

As suggested by a friend, I decided to take my child to a privately run care home for differently abled children in my home town. But I was not familiar with the place then,” she says. Help came in the form of P.K. Jameela* from Malappuram, who volunteered to take care of the child there.

“She understood my anxiety because her child too was differently abled. She attended to my daughter’s needs along with her own child for over 40 days,” says Rani. She is among the many parents in Keralam whose lives are inseparably linked with that of their children.

But their concerns rarely get the attention they deserve, according to them. K. N. Roshan Bijlee, director, Composite Regional Centre for Skill Development, Rehabilitation and Empowerment of Persons With Disabilities (CRC), a network of nodal institutions set up by the Department of Empowerment of Persons with Disabilities, Ministry of Social Justice in Kozhikode, points out that every such parent goes through different stages of grief.

“There is denial of reality; anger or frustration either at oneself or others; an attempt to get out of the situation; a period of sadness or depression; and finally the acceptance of reality,” he says. Roshan claims that there have also been episodes of men deserting their wives after blaming them for the child’s condition.

As the child grows up, the nature of the challenges also changes. “The child can somehow clear Class XII with the help of a scribe. But most parents will then be worried about their future as adults. In the past year alone, there have been over 20 cases of such parents either trying to kill their adult children or attempting to end their lives in Keralam.

‘What will happen to my child after my life’ is their biggest concern,” he says. Around 34% of the parents of girls are worried about the safety and well-being of their children in their absence. Menstrual hygiene management is another challenge, leading to increased physical and mental fatigue.

Sleeplessness is common. There are also instances of social stigma as attempts are made to keep differently abled children away from events such as weddings. Such attitudes affect the parents, Roshan says. D. K. Babu, a retired college teacher in Kozhikode, whose son is differently abled, agrees with this.

“It has been only a decade since Parliament passed the Rights of Persons with Disabilities Act to protect the dignity, rights, and inclusion of differently abled individuals. Society needs to accept the fact that most of them cannot survive without their parents’ help,” he notes.

Babu is part of an association of parents for the rehabilitation and assistance for differently abled individuals. Social activists say that the parents, especially the mothers, are often forced to give up their higher studies, careers, and social lives altogether.

A recent survey conducted by a private care home centre among a select group of 200 parents shows that there are at least four PhD holders, one of them from an Indian Institute of Technology, and 30 postgraduate degree holders, who are unable to pursue a career for themselves.

Most of them were avoiding social events too. U. Nandakumar, former Professor of Physical Medicine and Rehabilitation, Sree Chitra Tirunal Institute for Medical Sciences and Technology, Thiruvananthapuram, meanwhile, says there still exists a conservative section in Keralam that blames the mothers for their children’s condition.

“The mothers are always forced to carry the care-giving burden. This could lead to fatigue and mental breakdown because there may not be many with whom they can share their worries. Also, many parents of differently abled children are reported to be falling prey to people who offer magical cures.

They even sell their properties falsely believing that their child will get better. However, such treatment will only hurt the children,” he says.