[This is a fable written to portray the sad state of care giving that still exists in Kenya in relation to Down syndrome and other disabilities.]
At the labor ward that night, everyone was smiling. Twelve years had passed since the Wambaras’ marriage day and, because they had no offspring, gossip had been raging in the village that “Wambaras’ wife must be barren.” Despite all the disappointment and rumors, the Wambaras got along well. They maintained hope that their patience and love of God would bear fruits, as the local priest taught.
Finally, after much prayer, Mrs. Wambaras had conceived and the gift the Wambaras had long been waiting for finally arrived: a baby boy. As he left his mother, the baby delivered a strong first cry of arrival, an assertion of being granted existence without his consent. As the doctor took the baby for examination, Mr. Wambaras looked at his wife, and both smiled irresistibly.
In the examination room holding the 3.5 kg baby in his left hand, the doctor grimaced and muttered inaudibly. Something was amiss. The baby had flattened facial features including bridge of the nose, bulging almond-shaped eyes, malformed hands and feet, and the palms had a palmer crease that clearly indicated his condition. “This boy,” he declared, “is not a normal child.”
The Wambaras were so heart broken that they wished to leave Manja at the hospital and forget that they had ever brought him into this world. But it was against the law of the land to abandon a child, and so the Wambaras reluctantly took Manja home with them.
In Kenya, all disabilities, minor or major, are frowned upon. Disabled people are traditionally taken to be lesser human beings, who are a burden with a bad omen, and brought about by a curse from their ancestors. In some communities people discretely throw away disabled children at birth making sure to leave no track of the action; others take painstaking measures to hide them. They hide the child to also keep hidden the secret that caused the deformity: maybe the mother or father had committed incest, or a couple didn’t honor a bride price agreement, or the man, while a son, had seen his mother naked, or a daughter her father naked.
However, with the advent of Christianity in Kenya, some families have begun accepting a view that disabilities are an act of God and hence such children should receive special care and even education.
Six years passed since the Wambaras brought Manja home from the labor ward and hid him in their home. They did not take on the new way of thinking about disabilities. In fact, they believed that he was a curse, as they had remained for so long without conceiving and when they finally did the child was abnormal. The Wambaras never opened themselves up to love him as their child. He was confined to his room, never went to school nor played with other children. No one in the neighborhood saw his face.
Manja lived a lonely life. His only company was Wahu, the Wambaras’ house servant. Wahu struck a cord with the boy, as her morning started with preparing breakfast for him, ensuring he ate it. Then she helped him to bathe and dress and kept him occupied by playing with him with hand-made toys she made herself. Come lunchtime, it was her duty to see that he had taken his food and rested. Generally she spent most of her time nurturing him.
‘But for how long are we going to suffer?’ Mrs. Wambaras posed holding her nose as she left Manja’s stinking room during one of her rare weekly visits since he had soiled on himself.
‘It seems he will last forever!’ Mr. Wambaras replied.
‘How can you say that?’ she asked.
‘But what can we do?’ He wondered.
His wife retorted, ‘I can’t stand it any more. You’ll have to choose between me and him.’
They decided that they could not bear the burden of hiding him anymore. It was time to silence Manja forever. Because the Wambaras believed that Manja was a divine curse, they believed God would insure that no one would ever find out their horrible deed. It was Mrs. Wambaras who came up with the deadly plan. They could inject Manja with a poison while in his room and then convince the omni-present Wahu that they were taking Manja to their small pool in the back of the house while she tidied up the room.
The Wambaras would later return to their home with tears in their eyes, and report the horrible news that Manja had drowned. The following day, the Wambaras prepared to carry out their devilish plan. Mrs. Wambaras looked at Manja, then her husband and Manja again, her adrenalin rising by the second. No one talked or smiled. She strolled with steps of a soldier, holding the syringe with her right hand. Manja burst into laughter; his mother’s steps fascinated him. The animalistic laughter irritated her, giving her more reason to do it. She pressed the pressure pad as Mr. Wambaras moaned and turned away. Manja gave out a squeaking sound. It had happened.
Suddenly, Wahu burst into the room. She was so much like a mother to Manja that she sensed something was not right with her child. When she opened the door, Wahu found Manja lying unconscious on the ground, close to death. The Wambaras could not silence Wahu’s piercing screams. Neighbors poured into the small room and, realizing what had happened, they rushed the small boy to the hospital. As quickly as they traveled, they could not save the dying child. Manja’s life drained away before they could reach the hospital. He spoke no words, but uttered a final sigh, a farewell to a world that was so unkind to him.
All around his lifeless body stood nurses, parents, neighbors, and his beloved Wahu. More people were staring at his dead body than had ever stood before him while he was alive. After a postmortem examination was performed, and Wahu corroborated with the pathologist’s, the Wambaras were arrested and locked up. Surely they would spend several years in prison if not their entire lifetime, as such a vicious murder was not tolerated by the laws of Kenya.
Manja’s parents never gave him a chance to prove that his disability was not an inability to enjoy life. If only they could have realized that there was no norm to go by, no degrees of normalcy that should be used to valuate a child’s life. How sweet it could have been to watch him grow, to give him a chance at life.
A tale of truth, a prayer answered binds a promise between us and Ngai, few of us understand the ability in what life surrounds. I believe ‘disabled’ people have a greater purpose than most of us can achieve.