A few years ago, I’m not exactly sure how long, I went over to a friend’s home to have ice cream in unhealthy amounts, munch on cookies and to gossip (yes men do and you know it) on whatever was happening in the nightclub scene. Back then clubbing was a lifestyle and entertainment companies (including our own Nocturnals Ent) were mushrooming all over Nairobi and there was enough drama to gush about.
My friend had told me that her sister has Cerebral Palsy and in my “I am Adam I know everything” manner I’d written her off as having something akin to down syndrome or autism. Because all all congenital diseases are the same right? Well if you know anything about CP then you know that cant be any further from the truth. I was horribly wrong and completely embarrassed during my first encounter with someone living with CP.
So there we were on the bottom level of their house (it’s one of those built on a slope so the living room would be at the bottom level, the kitchen, dining room on the second and living quarters on the top two) chatting away with the TV on MTV or whatever music channel, when her sister came down the steps slowly, picked up the remote and put Disney Channel because High School Musical was on. She sat down to watch it for what I later learnt was the umpteenth time.
The first thing that struck me was her posture and the jerking motions her hands went through. Sometimes completing what you or me call a mundane task takes her much longer and with my limited knowledge of CP at the time I assumed that she was slow… i.e retarded (I was a very daft young man). My friend went upstairs no doubt to do whatever it is women do in the bathroom for fifteen minutes (ah the mysteries of the fairer sex) leaving me with her younger sister, alone. Of course I freaked out, internally mind you, because I had no idea what to do with a child I had wrongly concluded was cognitively handicapped.
As I sat there humming along to High School Musical (only Kanye can judge me) and pretended to be ABSOLUTELY ENTRANCED with my phone (scrolled through old texts) I noticed that she was struggling with something. I can’t remember what it was only that its seemed to take an agonising amount of time to complete. So *cue super hero music* Adam Kiboi Captain Chivalry to the rescue.
“Would you me to help you?” I asked in that high pitched voice we reserve for very very young children i.e 4 year old cousins struggling to open a packet of crisps.
“Its ok I’ll finish eventually, it just takes me a little longer,” she replied.
You know that moment when you feel like an absolute idiot…yeah that wasn’t one of my finer moments in life. That sing song voice? Immediately dropped it. We started talking while I waited for her sister to come back down, cartoons (before you think I was still dumbing it down, I talk about cartoons with everyone) High School Musical (both fans at the time), Hannah Montana (she disliked, I was in love with) and by the time her sister came back I’d like to think we became friends.
She’s grown into a strong, beautiful, amazing young woman and because of her I decided to learn more about CP.
Cerebral Palsy is a permanent physical condition that affects MUSCLE CONTROL caused by damage to, or lack of development in the part of the brain that controls movement. Via extrapolation of the data they have available the Cerebral Palsy Society of Kenya estimates that 3 in 100 kids born suffer from it to some degree making it the most common disability occurring in childhood. A person with cerebral palsy has trouble controlling the muscles of their body thus affecting motor control and coordination. A result of this is weakness and stiffness of muscles, awkwardness, slowness, shakiness and difficulties in balance. Other difficulties that may turn up are problems with speech, hearing or vision, epilepsy, perceptual difficulties, heartburn, feeding difficulties and repeated chest infections among other things.
Management of CP focuses on muscle control and treating the conditions that arise from it and this has to begin at an early stage however in Kenya families keep their kids hidden away because they fear the ridicule from the public (stupid.) Even if they do have their kids assessed and diagnosed there’s no centre to help people with CP.It costs a minimum of 60 000 to offer therapy to one person for a year, it seems low but our per capita income is 141 000 putting Kenya at position 154 out of 183 countries. The average Kenyan cant spare the 60k.
If you want to read/do more for kids living with CP check out the Cerebral Palsy Society of Kenya
Also check out this blog by a person who grew up with Cerebral Palsy
“Hey dad this is my imaginary girlfriend”
“You can do better”
“That’s not nice”
“I was talking to her”