Living with Cerebral Palsy: A Nigerian Perspective

Guest Post by Tobiloba (Tobi) Ajayi, 2016 Mandela Washington Fellow

[Image description: A young woman with dark hair pulled back in a ponytail wearing an orange blouse is seated and smiling at the camera.]

 

My family members are storytellers, so I didn’t have to wait a long time to understand why I couldn’t do certain things the way my siblings could like run, skip rope, ride a bike or walk properly. A childhood version of ‘The Developing Human’ hanging around my bedside helped explain the story to me quite well.

I was privileged to attend an inclusive private primary school and have parents who were big on inclusion, so I didn’t realize how hard life is for people living with disabilities until my parents decided that it was time to increase my independence and cut off the apron strings– by sending me off to a public boarding secondary school, where inclusion was not much of a priority.

For the first time I understood what it felt like to be pitied. The stares, and those who would try to take advantage of your weaknesses, also came with that territory. The lack of access in a public boarding school taught me resilience, though, and I learned that falling down was going to be a regular part of my life.

This is me, someone with the kind of CP you may consider mild. On the traditionally used scale of 1-5, I’m about a 2.I walk with a gait, my depth perception is very off, and my eyesight is far from 20:20, but I have clear speech and I can walk. I am one of the very lucky ones.

I made a lot of friends and I did pretty well in school, so getting admitted into the university was not the problem; actually attending, now that was the real issue. Living in a country where the hallmark of beautiful infrastructure is how intricate the stairs are, and how many twists and turns and step downs a building can boast of, became a real pain. I fell down almost daily in my first year, and got used to my fellow students lining the streets to stare at me walking to catch a cab to class.

I got used to being told by lecturers to go home, and being told by my mates to quit school, or at least to switch to a less demanding course of study. My parents got their fair share of the backlash too, for being bold enough to send me to school on my own and for not keeping me at home with them.

My eyes opened to our cultural and societal understanding and expectation of disability which is still largely, “It’s not normal, so we don’t want to talk about it or address it.”

With 700,000 people living with Cerebral Palsy in a country that does not have a national version of a disability rights law, such as the ADA, my job as an advocate for proper disability management and inclusion in community life is essential. The more disabilities we manage properly, the better a picture we can paint of the possibilities and change the narrative about disability; and, hopefully influence policy makers to make and implement policy that fosters inclusion in all facets of  society.

 

Tobiloba (Tobi) is a three- time published author who believes so much in the power of words- written or spoken- to change the world, one person at a time. She has spent her career working with various NGOs in Nigeria and beyond improving the lives of people living with disabilities, with a special focus on cerebral palsy. She currently does this in her work at www.benola.org. Her reasons behind this are personal. Tobi was diagnosed with cerebral palsy (CP) at 20 months and has continued to push the limits, chase after her dreams, and redefine what it means to live life with a disability. She holds a law degree and was called to the Nigerian Bar in 2008. She also holds a Masters degree in International Law from the University Of Hertfordshire in the United Kingdom. She is currently a fellow at United Cerebral Palsy’s national office as a part of the 2016 Mandela Washington Fellowship, a flagship program created by President Obama to spur growth and prosperity, strengthen democratic governance, and enhance peace and security across Africa.