MY STORY: Life with cerebral palsy

“My journey began 29 years ago at Pumwani Hospital in Nairobi. My mother had a difficult birth, which resulted in my brain being deprived of oxygen. So I was born with cerebral palsy, a disorder that affects muscle tone, my ability to move my limbs in a coordinated purposeful way and my speech.

“While I am not privy to how the experience of finding out that their child was disabled was, I imagine that it must have been devastating for my young parents. They say that it takes a village to raise a child. I believe that this is especially true for a child with a disability. I remember having a mostly normal happy childhood. This is largely because our family, the community around us and the church, treated me like they did any other child.

“Children can very cruel especially to other children who are different. I found this out and started realising that I was different when I finally started school. The taunts weren’t even the hardest part of primary school for me. I grew a thick skin for these. What I struggled with was the writing. With my jerky hand movements, writing is a painfully slow process for me. Our education system has been designed such that a student needs to write so that they can be moved to the next level making it an uphill task for a person with cerebral palsy.

“I do not remember having a dream job or profession. All I wanted to do was get through the system. Also, I hadn’t seen anyone like me working as a professional so I didn’t have much to look up to. Other than the struggle to get through the daily tasks, both high school and university were manageable. I graduated with a bachelor’s degree in education from Kenyatta University in 2012 and I found myself out here in the real world with absolutely no clue where to begin.

“The people I approached in search of a job were hesitant to invest in me. ‘If you are having problems writing, how are you going to teach?’ they asked. Then there were those who, even if they didn’t say it, turned me down because they didn’t understand my condition. A lot of people imagine that cerebral palsy is an intellectual disability; it isn’t.

“My first break came in the form of a gig as a volunteer teacher at a special unit of a public primary school. While there was no pay or much career advancement, I got to interact with children who were intellectually challenged. It was then that I began appreciating who I am and the abilities that I have.

VOLUNTEER

“Then, in 2013, I became a volunteer with Cerebral Palsy Society of Kenya and my passion for disability advocacy was born. I mean, this is something I am passionate about and it is something that I have lived through so I understand it. I only however began thinking of myself as a leader when I participated in the Mandela Washington mentorship programme last year.

“Now, I am in the process of setting up an NGO through which I will work with people with developmental disabilities. My focus is on education and employment. I want children living with these disabilities to have the right to attend school and the adults to be given opportunities to earn a living. A lot of employers are reluctant to invest in people living with disabilities. An employer will only hire you because the law requires them to, and they will see it as a favour. Instead of investing in you and giving you responsibilities, they will give you a desk in the corner. This way, a person living with a disability can never grow.

“When I am not spreading awareness and advocating for rights of those living with disabilities, I do online writing jobs. I am still living with my parents as I need help with most of the daily living tasks like spreading my bed, making my hair or buttoning my clothes. I am however also aware that a lot of people living with disability do not have a strong support system like the one I have.  I am grateful for the many strides I have made. For the future, I trust God.”