A Dark side of Life: An intellectually disabled child

A woman's world can fall apart with the birth of an intellectually disabled child. Two mothers who have gone through grief and torment share their anguish with Pooja . As the day passes by and night lingers, more and more trouble seems to be in store. More misery and hardship are to be faced. They seem confused and devastated just thinking of the future in store for them. They are two grieving mothers. But also twin avengers determined to give a direction to many with their misconceptions.

Neeta, a single parent with a 19 year old son is training coordinator at the Association for the Welfare for Mentally Retarded (AWMR), while Parvati with a 13 year old daughter is Member of Sungava- Mahila Vyavasahik Talim Kendra which works for the Mentally Retarded. Both of them have come this far with a definite aspiration. The aspiration to do something for the intellectually disabled as they themselves face the plight in their day to day life.

Neeta with tears in her eyes, unravels her story from the day her son was born. Karul is his name but people around him often mispronounce it into something else. "I have often seen people giggling and whispering the word pagal. I feel very bad," complains Neeta. "Why aren't they treated equally like normal children? They too pay an equal amount for taxi fair, food or clothing."

Parvati has the same kind of story to tell but with a little difference. Her daughter Prava (name changed on request) loves to dance but her dancing is viewed only by a few friends and family. "From the day she was born I have been blamed. I have been shunned (kept behind closed doors) by my husband's family but my husband's support has been with me through thick and thin. That's how I have been able to come this far." As she flips through photographs of her daughter, she tells me that these have all been taken by her mother's family. Her in-laws have totally abandoned her and her daughter to themselves.

Neeta and Parvati are like watchdogs over their offspring. From day one, they have been up on their feet.They have encountered numerous problems in day to day life. Problems of not being invited to the family functions and gatherings, unsupportive relatives and deprivation by close family, expenses to the hilt whether it be medical bills or for school facilities and many more. But the most important problem is being isolated from the rest of society. The impact is not confined to parents; others too suffer: Siblings have been badly affected. As siblings of the mentally retarded, Kakul's sister and Prava's brother stick out in school and outside. According to Psychologists, the term intellectual disability is primarily a disorder due to impaired growth of the intellect in a person at a very young age. Though the common causes are brain damage, genetics or lack of stimulation, our society often goes along with false ideas of evil spirits or punishment for past wrongdoings. Relatives and family members often feel embarrassed and ashamed. A sense of guilt makes the situation worse and they blame the parents for having a mentallyretarded child. Many also feel social stigma and hide their problem.

Neeta and Parvati show an urge to vent their heartfelt grievances towards society and tell the upcoming generation. Neeta wants her son to be treated as a perfectly social human being, to be behaved towards normally by people, while Prava wants mothers like herself to realize the talent of their children and give them a chance in life. Every child can make it, they strongly feel.

And what about the future? Both the mothers see a future that is bleak. Both of them often ask themselves what is going to happen to their children after they themselves die. Neeta hopes to keep her son in a hostel and give out her property to that end while Prava, thinking about the cruel world, wishes her daughter to die before herself. But many questions remain unanswered.