Thriving with Cerebral Palsy: An encounter through my brother’s life (Through her Eyes #3)
By Mercy Wambui, edited by Lydia Kibandi — Gataka, Kajiado region, Kenya.
At first sight, Malvin looks like any other ordinary 15 year-old boy. He has recently made the transition into manhood after going through his initiation rite.
Malvin will also be celebrating his birthday this month. However, unlike many boys his age, Malvin’s birth was coupled with many complications, which almost left him unable to enjoy the little joys of being a teenager.
Malvin was born with cerebral palsy. A condition which, in Gataka, where I come from, is still heavily perceived as a stigmatising affliction. Here, giving birth to children with disabilities is frowned upon due to extreme cultural and religious beliefs. In most cases, children born with disabilities are hidden and shun away from the wider community by their families, sent to schools far away from their homes to avoid raising any curiosity, and to drive away the “shame and disgrace” of having a child with special needs. Sadly, in extreme cases, children with disabilities are neglected to the point of death.
It is not so for our family.
A day at a time, we all continue to learn about cerebral palsy, allowing ourselves to live through Malvin’s not always so audible speech and experiences, while also never leaving him out of our normal experience.
Although there are negative attitudes towards children with disabilities, very few attempts have been made until now to understand their experience, and this often leads to the mismanagement of their condition.
It did not take too long after Malvin’s birth to understand that it was tough for him to roll food, and that this would then require us to blend, or make soft foods for him.
Doctors would complain about his weight not matching his height, and often reject him, and administer the wrong treatment to him.
But hospitals were not the only place where Malvin experienced rejection. We would have our work cut out for us when attempting to enroll Malvin into a good school, too. School after school, Malvin faced rejection, with many viewing the responsibility of catering for a child with special needs as a burden.
Malvin at last got admitted at Nkaimurunya primary school, a school, which accommodates more children with special needs
Helen, a teacher at Malvin’s school, has introduced him and the students to beadwork.
Little has been done to incorporate pupils with special needs into the mainstream job market, and many as a result are often abandoned by society, with no chance at a real career.
Madam Helen wanted her students to get a real chance at life. She identified beading as a therapeutic activity, and a way to enable them to earn a living, and be productive in society
Since being introduced to beading, Malvin has quickly taken up the skill, becoming top of his class, and even passing down the skill to others. And having one weaker arm has not stopped him from exploring his creativity in the items he makes.
As the COVID 19 pandemic prevailed in the country hampering many learning efforts, Malvin has stayed busy growing his expertise in beadwork. He quickly started attracting a clientele for his neatly and wonderfully made beadwork in serviette holders, ladies’ pouches, keyholders and other household items.
Although Malvin had been cut down for a life full of limitations, he now lives a near normal life, and enjoys a good game of football with his friends, too, like other boys of his age. But the same is not true for many children in Gataka.
And although Malvin’s story has opened up many members in our community, a lot more still needs to be done to ensure families offer the right kind of support- and love — to their children.
#ThroughHerEyes is a new monthly column dedicated to sharing the stories and perspectives of under-represented women. Each month, a story by a Lensational storyteller is published on Azickia’s website.
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 France License.
The story was originally published at https://stories.azickia.org on October 28, 2020.
