Column

An email letter from an acquaintance made me think seriously. She had recently moved, from Mumbai to Vizag, and was getting used to life there. Nothing unusual about that, but for the fact that she has a son who has serious health problems that prevent him from doing anything for himself, including eating.

Her email stated that his normally fragile condition had worsened initially because of the intense chemical pollution there, which made him prone to severe asthma attacks, and put him in danger.

The fact that he was fed through a nasal tube did not help either. In order to help him breathe and eat better, a gastrostomy was performed, which meant a feeding tube was inserted permanently in his stomach,

So far so good, but she adds, that though the child now can be fed more efficiently, the operation has had many side effects.

To quote: the surgeon did his job, and quite well… but left us at that. Rohan had a tough time coping with this surgery for the first month.

Suddenly we couldn’t hug and cuddle him freely, he was in pain, and we had to tie his arms so he wouldn’t pull out his tube. All these things put together played havoc with his psyche and sense of security....as a result he became tighter and tighter (spasticity increased).

I only wish the surgeon, or somebody in his team would have warned us about all these associated problems…she adds. This is the part which made me think. In India, a challenged person or child, or senior citizen is no one’s concern.

In this case, the surgeon did not think it necessary to take his role a step further and prepare the parent for what could lie ahead. It is symptomatic of the general attitude towards a less than perfect human being. Affected children specially are completely the mother’s lot, or in some cases, the family’s concern.

There is nothing in our very democratic, far-thinking cultural heritage that makes allowances for the small minority that is not blessed with all faculties, and thus able to live on par with others.

This child is lucky enough to have a family which cares deeply about its wellbeing; mother, father, grandparents, even cousins who are only slightly older rally around and try and interact and make him part of their life.

In most cases, however, children with any disabilities are left alone. The mentally challenged are the worst hit. And if they are born into the homes of the poor, their fate is indeed pitiful.

I have heard of countless cases of mentally unstable or deficient children in slums, who, to keep them from harm and from wandering away, are kept chained in a back room, while their mothers go to work. It sounds terrible, but looking at it from the mother’s side, with a family to cook for, tend, and earn for, does she have a choice?

Indeed, despite the fact that we have fine institutions doing a lot to help the handicapped to live as close a normal life as possible, the fact remains that they are seldom part of the mainstream. Those who manage to get into the swim are a tiny exception; most live life on the fringe.

Even the elderly end up doing just that. I know what a struggle it is for my mother to visit the mall for a meal, which is one of the easier outings she can enjoy.

The long walk from the car park is beyond her, and finding her way up the stairs into a restaurant for a family meal is something of an expedition. I know we tend to favour one of the many malls around where we live, only because there is a wheelchair on offer, and she can be spared the torture of the long walk.

We are a nation in the sun. On the move, rising, shining, finding our place on the world map. These are phrases that have been worn thin with overuse.

We forget the countless have-nots who live in the villages, the below poverty-line masses that languish in every city and town across the country.But more cruelly, we forget the mentally and physically challenged in our midst, making no concessions for their disadvantages, making no attempt to understand their needs or desires.

It is indeed quite akin to the theory that said only the fittest have the right to survive. But that, I thought, only connected to the law of the jungle.

Or am I wrong?

Email: ssaran@dnaindia.net