Tuesday, June 17, 2008

Experience of a guardian with a disabled child

This early morning as I was going through and old news paper (Daily Nation January 29, 2003.)
One story really touched my heart and I realized how disabled people are stigmatized and the pain which they go through being taken as less human being.

Every so often, Cynthia Shihafu breaks into a song, one from a repertoire of hopeful Christian hymnal and children play song.
She loves to sing says her grand mother, 60 year old Berneta Shihafu. Cynthia is a cheerful 15 year old girl who has never been able to use her limbs. At her Lirembe village in I kolomani Kakamega district, her sad story is whispered among neighbors who peep at her through a hedge that rings the compound.
Unable to move her own, Cynthia has never been able to leave her grandparents compound. She relies on her grand mother to move her out of the house so that she can sun her self, then back to a warn sofa, where she lies most of the times. But she is not oblivious of her surrounding: “ my friends come here to teach me how to sing,” says Cynthia “They teach me very many things, and I am very happy.
She is particularly fond to one friend. “Sharon is my best friend. I always want to accompany her to school and to the church. She teaches me Christian songs and poems,” she adds.
Sharon is one of Cynthia’s greatest friends. “children in the neighborhood unlike adults like her very much,” says Berneta. “They are always here after schools to or during the weekends to keep her company.”
In her heart Cynthia longs to go to school. “I would like to go to school so that I can read and write. I want to walk and run like other children” she mumbles, a wry smile lighting her beautiful face.
Hope aside, her guardian has more practical problem. As she tries to move the girl from the house to the mattress laid out a few meters away, Cynthia groans in pain and glows at Imaginary objects.
All the while, terrified relatives stand watching in semi paralysis. Unable to accomplish the task, Berneta calls in an aunt who manages to pull Cynthia from the sofa. And the half-carried, she is taken to the mattress, placed where her father house once stood.
“The house collapsed when my son and wife fled, explains Berneta. “They went away as soon as they realized Berneta was disabled” she adds as she struggles to stop her grand daughter from crawling off the mattress.
“My only son, Bernard was working in Nairobi where he got his wife. They came home with baby Cynthia when she was only a few months old. They love her very much since she was their first child. Btu when it dawned on them she was disabled, my daughter in law complained about the state of the child.” Then one morning in 1989 we work up to find out she had left, her husband followed the suite a few days later. We have followed them everywhere but we were told they are living separately in Nairobi.”
Her grand parents once took Cynthia to Kisumu provincial general hospital when she was a toddler in their initial attempt to treat her deformity. They also took her to Malava hospital in desperate attempt to save her but all was in vain. “We took her to church for prayers but her condition did not improve, so we have brought her back home where she has remained ever since” says Shikami.
At malava hospital, doctors designed a simple orthopedic chair to enable Cynthia to sit up but the technology did not help. Cynthia could not sit up, the chair, the semblance of the of the wheelchair is gathering dust at Shikami’s house.
Shikami had sold some of his family land and was at his financial tether’s end. He gave up on any attempts to treat her after that.
“We believe this girl can still be helped. She is very conscious of what is happening around her.What she need is specialized treatment,” her grand girl, but we love her we are determined to see her getting up” says Shikami. Cynthia’s grand parents says some of the villagers have been treating her like an out cast, but they think there is nothing irreparably wrong with her.
“I have to be around her all the times says Berneta. “ I have to bathe her, feed her and watch over her all the times, it is a job no one else can do.”
Cynthia’s condition was not well diagnosed but her grand parents who say doctors who saw her when she was two said she was disabled two limbs.
The shikami’s are appealing for their son to return home and look after their daughter. “ this girl is too beautiful to be abandoned. I am appealing to my son wherever he is, to come back home and see his daughter.” Says the grand mother