Disability is not Inability

When one sibling has a disability

For many children, having a brother or sister living with a disability is a fate they would have wished to avoid. Some hate the extra responsibilities that come with trying to make their siblings comfortable while others just dont understand their condition.

Yet stories abound of children who have learnt to be their brother’s or sister’s keeper, with time built a unique relationship between them, and brought boundless joy to their families.

Take 13-year-old Peter Kiai, for example. His younger brother, Njoroge has Cerebral Palsy- a condition that slows down physical development. Njoroge attends St. Joseph’s Catholic Special School in Shauri Moyo where, besides therapy to strengthen his muscles, he is also trained on how to go to the toilet, eat and walk.

In the beginning, Kiai did not understand the problem with his younger sibling. “I noticed that Njoroge and I were different when l was seven years old. I always wondered why he didn’t respond when I tried to talk to him, even if I nudged to get his attention. Sometimes l would get really angry with him,” explains Kiai, a Class Seven pupil at SOS Primary School in Buru Buru

He adds; “I was very confuses about his silence. And the constant attention he seemed to demand from everybody more so from mum. At the time I thought he either did not want to play with me or he was just unhappy about something.” But today, Kiai understand his brother’s condition. He say;” In my understanding, Njoroge suffers from a condition which makes it difficult for him go to the toilet, dress himself, or play.”

Despite their obvious differences, Kiai says his brother, whom he prefers to call Njoro, is his best friend. Though Njoroge does not speak, the two share a unique bond that they have been nurtured over the 13 years that they have together. It is even evident, on the day of the interview, as they squeeze to fit on one chair. The two constantly smile at each other. Kiai has over time learnt to accommodate his brother and understand him better.

“I can tell what he is trying to tell me through various gestures or looks. For instance, when he is hungry, he will grab my hand and drag me to the kitchen or bring me a thermos in case he wants to take tea or milk. And since he loves watching movies and listening to music, he knows the various video cassettes he points at for me to play for him,” Kiai explains.

Their story may be different but the situation is almost the same as that of Mary Wanjiru, 6, who is the pillar that supports her two older sisters; Rospha Judy, 19, and Alice Wambui, 16, who are both mentally challenged. The three siblings left Mathare slums following the conflicts towards the end of list year and now live in Maji Mazuri Children’s Home, a rehabilitation centre that caters for children with disabilities and orphans.

Even though she is the youngest, Wanjiru is the link between the two elder sisters who somewhat live in a “world of their own”. She looks out for them, making sure that they do not hurt themselves. But she confesses sometime she wonders why her elder sisters cannot play or protect her when she is afraid.

“I like it when my sister Alice allows me to play with her hair,” says Wanjiru. “I play with Rispha a lot more than l do with Alice because she doesn’t speak and rarely interacts with other children. I wish she could talk to me or teach me how to play certain games”.

Kiai and Mary are just two of the many children with siblings who have disabilities. “People stare at us when they see us, kids are always curious to find out why we he won’t talk, they ask why he makes funny sounds, some laugh at him while others will simply stand and stare as if they have seen something out of this world. And because l do not know what to do, l keep quiet. I cannot go around explaining to everybody that my brother has special needs and that he should not be treated differently,” Kiai says.

Experts say that living a brother or sister, including one with a disability, can be rewarding, confusing, instructive, and stressful. Siblings of a child with a disabling condition express a range of emotions and responses to that sibling, similar in most ways to the range of emotions experienced toward those who have no disability.

This is true for Kiai and Mary. They confess to feeling hopeless and frustrated at being unable to communicate with their siblings as they would have liked. It is a challenge, they say, especially because they would want to play and share their joys.

I get very angry when I want to jump a rope but my sisters don’t know how to do it, says Mary. Kiai concurs with her saying: “I wish that my brother were like any other children so we can do more things together. I get really frustrated when I try to teach him how to play football or cards. I always pray for him that despite his condition, he will achieve his dreams that may be hidden somewhere inside his heart,” says Kiai.

Has Kiai learnt any lesson from this experience? He says his brother’s situation has made him a responsible person: he finds himself clearing his path so that he does not stumble. He makes sure when they go to bed his brother is the first to fall asleep. It is my hope that he will one day be like me; able to read, play and even talk, Kiai adds.

Source: Story By Olive Munyi; Sunday Nation; April 29, 2007