Pope Francis in Philadelphia kissing a child with Cerebral Palsy
No parent is ever ready to learn that their child has cerebral palsy. In some countries, Kenya included, having a child with CP is a challenge that is further complicated by the lack of adequate public facilities that help them navigate life.
Depending on how severe CP is, a child with the condition might require care throughout their lives.
Often, caretakers are left on their own devise to figure where to take their children to school, where they can access therapy and so on. I must say though that the Cerebral Palsy Society of Kenya has been doing some awesome job.
By opening their doors, it simply means that those with CP can access their facility and get the much needed information and even therapy. Sometimes, even moving from home to home to offer therapy. Yet they cannot care for them all.
Some public hospitals offer occupational therapy as well which is a relief for those who can access them. In some facilities, even with therapy available, there are no health workers specifically trained to handle those with cerebral palsy.
The notoriety of our public institutions however, becomes more evident when it comes to dealing with people living with any disability. From buildings that are inaccessible because they do not provide for wheelchair ramps, to a transport system that is ignorant of the obvious fact that those with certain disabilities will require designs that enable access.
There is a lot of rhetoric that goes into the debate about disability inclusiveness. Rarely do we need to understand is that rendering those with disability immobile impedes their own development.
Couple that with the fact that the education system is not inclusive and what you have is a group of people who are economically and socially excluded even when they could, at the best of times, be productive members of society.
Those living with Cerebral palsy sometimes need adaptive equipment to improve their mobility. In Kenya, the equipment is either too expensive for most to afford or not available.
Even with all these challenges, some have argued, that Cerebral palsy in Africa, is largely preventable if the ”right human and material resources were available” according to Lancet.
No voice better tells the struggles of living with CP than that of a person living with it.
My name is Elsa Koi. I am 26 years old
No one knows exactly how I acquired CP. I delayed in some milestones and when my parents went for consultations at a local dispensary they were told to wait ‘some kids take time’.
At nine months their patience couldn’t hold no anymore. They took me to a hospital where they were told to start therapy and they did just that.
Still it wasn’t clear that I had CP. At the age of 3 years my dad passed away, a major blow to my mom but she was determined to see me reach my full potential.
I started walking at the age of 6 using standing aids.
The school was very supportive which went along way in ensuring that my mum and I were settled. But we moved to Kisii when I was 9 years old. I was in class 3.
It is then that everything went down hill. The school was unsupportive which made it very difficult for us.
When I was 11 yrs, I got highland Malaria which sort of erased most of my gains. I couldn’t walk.
That was frustrating but then at the age of 12, I was able to walk again. It illustrates the ups and downs of this journey. It is personal to each one with CP, it is arduous especially for a young mind rearing to go yet there are days you simply can’t rise.
But I have made a vow to myself that I will conquer.
And I say that even knowing how difficult it has been to access a good education. The challenge in getting schools for those with CP is known to parents and guardians like mine.
My mother and I
My mother can confess it has been difficult getting me well accommodated in the education system. Like a nomad in search of greener pasture, I have moved from one to school searching for one that can accommodate my abilities. Until we found THE ONE. It was called Acorn Special Tutorial.
The proprietor suggested that it would be good to have me on the international system, IGCSE. It worked for me.
But again in 2015, I was forced to drop out of school because I had a lot of pain on my right hand. It took time for the doctors to establish what exactly was causing the pain.
It turns out my spine has a problem. I went to India for surgery and I am still recovering from that. Although I can still walk, it is not as swift as it was before but I am doing therapy which is helping me gain my strength back. God has been faithful.
I long to date but I have never had anything serious. Maybe that is because I didn’t grow up in Nairobi and now we are in the big city and I’m sick so mmmmmh ….going out is a bit hard.
My mom is somehow protective, I kind of understand her. I know she wouldn’t mind if she knew exactly where I am and who I am with.
My support system is amazing. I am blessed to have friends who are simply Godsend. They do not throw pity parties. They just believe in me.
I must confess it’s not easy having cerebral palsy as an adult. I actually miss my childhood…. Yeah I do….. because back then I would play but now it’s very hard to even approach something.
Health-wise, I feel better and I’m now looking up to my goals with so much optimism. I love graphic design. I am hoping that soon enough, I will be a graphic designer.
3 things I want people to know about cerebral palsy
- Accept we are here not by mistake but we are here
- Please stop with the pity parties and talk to me like a human being, an adult
- Meet our needs, hold us and tell us you believe in us. Believe in us… we will shine