Holding her mother's hand tightly, Mariam Khan entered the room. Her eyes wandered around the walls and the ceilings. With the help of her mother, she sat on the chair and took a while to position herself. She gazed absently at the wall and sang in monotone. But after a few minutes, she raised her head and looked directly into my eyes. Her eyes were difficult to see behind her foggy eyeglasses. She looked curious, but it was short lived. Soon after, her gaze returned to the wall.
"Greet the guest," said Dr. Jamal Ara, Khan's mother. The girl ignored her and kept staring at the walls. This is not something one would expect from a girl her age, but Khan is special -- she was born with an extra chromosome. Since Khan, now 19 years old, was getting a bit agitated sitting idle, her mother had to bribe her with her favorite supper: A bowl full of chai and a loaf of bread that she dipped into the bowl and ate with delight. While she ate, I listened to Khan's mother narrating the tale of her struggles in bringing up a child with Down syndrome in Pakistan. Occasionally, Khan became distracted and then started pounding the spoon on the table or fiddled with my cell phone.
Some families fuss about a daughter, because they crave an heir who will carry on their family name. But Islamic tradition is clear: Children are a blessing from Allah! And there is no provision to abandon or mistreat children born with a genetic disability. Being courteous and compassionate, particularly to the young, is an integral part of the Muslim way, which also works to instill kindness in a child at a young age. Those children with special needs need extra care and affection. They are not ill.
Ara loves her daughter despite her limitations, but people's reaction towards Khan ever since she was born has only led her to despair. One relative, perhaps in sympathy, asked her: What have you done to deserve this calamity? Another suggested it was a test of faith, something she would have agreed with had it not been said so caustically.
Khan was born to Ara, an endocrinologist, 11 years into her marriage to another doctor. The news of expecting a child came as a surprise, since she had given up all hopes of having a child at that stage of her life. She declined tests designed to screen for genetic problems, because she believes a "child is a gift from God." But for many of her relatives, Khan was a "curse from God." She did not consider abortion an option and so it did not make sense to have tests done. She found out about her daughter's condition at birth.
"When she was born, I was angry with Allah, and I was emotionally disturbed, but it is easy to come out of despair when you believe in the One and put your faith in Him," she said.
Taking care of Khan amidst societal taunts was enough of an ordeal for the mother, but things got worse in 2007, when her daughter was diagnosed with diabetes. She needed five insulin shots a day that reduced to one after a year of treatment.
Khan doesn't have many friends. She talks to her mother and confides in her canvas -- that's where she expresses her deeper feelings. She has been taking art lessons at the Fixon School of Art and Creative Techniques (FACTS) in Karachi.
"Mariam has her own imagery, her own world," said the Director of FACTS Akhter Zuberi. "Her choice of colors depends on her mood, she leans towards darker colors when she is depressed and brighter colors when she is happy."
If the choice of colors is dark, Sesame Street and Barney and Friends brighten up her day, always.
Even though Khan may not be fully accepted by society, "she is not a mistake," said Dr. Ara. "I feel God wants to teach me something, since He doesn't test people just like that." Despite Ara's constant struggle, she believes her daughter is one of Allah's most beautiful creations and a source of happiness. She cherishes every moment with her daughter, but hopes that the society starts to understand special needs children and treat them with kindness.
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