Posted in Disability, disability/illness

They called it a Punishment for the Unknown Sins, Some called it ‘Madness’. Today it is called ‘Developmental Disability’ and my life was destined to be a part of it’…

Courtesy of Sandy Millar, Unsplash

He came into this world with an innocent spirit  but with a physical condition, recognized as ‘Development Disability’. At that time  it was commonly called ‘Mental Retardation’, which meant anyone suffering from it  would be having difficulties in certain areas of life, especially in “language, mobility, learning, self-help, and independent living”.

A helpless human being born in this world with an innocent soul, oblivious to life’s reality, unaware of its purpose, totally unconscious of self but for the fulfillment of the  basic need for food and strangely, of extreme sensitivity to music. The tunes that caught his fancy would excite him to the point of screaming that gradually melted into crying and, after long hours, would end by fatigue and sleep.

Everyone at home loved music. Father had quite a collection of 75 rpm records and a stylish Grundig record player which would be attached to the radio. Almost every evening there would be a half-hour music session before dinner was served.

My earliest memories are of joyful moments when he was born. Good looking, with dark eyes, long eyelashes, adorable face specially when it broke into a smile, but something was very odd about him. I could not understand just what at that time. Two years old but hardly able to sit: “when will he play with us? Why doesn’t he speak ?” The only answers were “with time dear” and “in due time, he will.”  We would run off and get busy with our own games and books, accepting the quietly given explanation.

When he was five, he began to sit, but still no speech, nor play, nor self awareness. He would sit on the tricycle but could not pedal or ride. With time he learned to stand and one day took a few steps. Soon with the support of the wall he began to walk. Still no speech. Fits of laughter began to occur and would end up in screams. Lying on the floor nothing would stop the screaming untill time brought an end to them.

He never knew he had a name. He was not conscious of t parents, siblings, or anyone else. He had no idea of day or night. When he started walking he was not aware of the way to go. Once unnoticed he walked out of the gate and onto the road, he was almost run over by a passing vehicle. He was hit and the fall broke two of his ribs. It was a painful time for him. From then on he had to be strictly monitored and often in a bolted room.

With passing years the truth of his never getting well and normal was accepted. He would never be able to converse or take care of himself. He needed constant vigilant care for falls or injuries, for safety against electric wires and shocks, for all sorts of dangers. There was no end to care as he was alive in a world of his own. Parents did all they could. No medicine would work.

Hunger is a strong instinct. He would reach out and hold the arm tightly of anyone close to him at that moment and would push that person towards the door of the room.I t was a clear indication that he was asking for food, but he had to be fed. He could not hold a spoon or a cup, nor a biscuit nor a piece of bread. Sometimes the morsel would get stuck in the throat because it was not properly chewed. Panic would result. Fortunately the first aid of patting on the back would work.

He was not aware of the dangers of injury. Once, in a fit of laughter he clutched the electric extension wire on the floor and let out a loud scream, by the time the connection was cut his hand was burned, the flesh cut and bleeding. The wound healed but the hand could not be normal again. The need for constant vigilance kept the whole family alert. The risk of leaving him alone even for a few seconds was profound and life threatening. One aspect in his personality was that he was a docile human being. Nonviolent.

A newly established state had very little  health care or disability support centers for special-needs children or adults. Tariq ,as he was named would live in his own home, which for the family became a guarded place. Fear concern and worry prevailed, only prayer would bring some solace and strength to the heart. One can never fully understand nor find any answers. The truth is with the One Power Almighty.

Disability of all sorts needs constant care comfort patience respect and love. May Allah the Most Gracious and Most Merciful save and protect his people on this beautiful Earth and May all be blessed with the best of health and happiness.

© 2020, Anjum Wasim Dar

Author:

Writer Award Winning Poet Educator Researcher ELT Professional Married

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