More than My Cerebral Palsy

My journey with a stigmatized condition

Nii Anyetei Akogyeram
More than My Cerebral Palsy
Photo by Mantas Hesthaven on Unsplash

According to the Cerebral Palsy Alliance Research Foundation (CPARF), about 17 million people have some form of cerebral palsy globally.1 In my native Ghana, in 2023, more than 22,000 children of the 34.1 million people (0.07 percent of the population) are estimated to be living with cerebral palsy.2 The data says little or nothing about adults living with cerebral palsy, but I happen to be one of them. My name is Nii Anyetei Akogyeram, but I am popularly called Inocki Popo. My grandfather named me Enoch, but my older cousin changed it to Inocki and added the pet name Popo, resulting in my nickname: Inocki Popo.

I was born in Accra, Ghana, on March 8, 1990. During the first week after my birth, my parents noticed that my skin and the whites of my eyes were yellowish, and suspected that I had jaundice (a condition that occurs when there is excess bilirubin in a baby’s blood). As a remedy, they placed me under the early-morning sun for a few days. The blue light spectrum found in sunlight easily breaks down the excess bilirubin to enable the body to excrete it. When my condition did not improve, they rushed me to the Korle Bu Teaching Hospital, where doctors replaced the bad blood in my body with good blood through a transfusion. After that, they put me under ultraviolet rays.

Three to four months later my parents realized, to their chagrin, that my development was slower than normal. They took me back to the hospital, but the doctor who examined me assured them that there was no problem.

Discovering Cerebral Palsy

Despite noticing regular twitching and drooling, the doctors could not say what was wrong with me. The hospital, I learned, became my second home, because anytime I had a high temperature, they rushed me there. For a short period I had physiotherapy. Because of the drooling, my doctor prescribed a wristband, which I wore on my left hand and used to wipe off saliva whenever it came. He prescribed a malaria drug called Camoquin that my family nicknamed Sunday, the day for treating high temperatures.

At the age of 24 I took it upon myself to find out what was wrong with me, and I spent hours online for information on my condition. At last I found that I was suffering from a disease called cerebral palsy (CP).

Cerebral palsy, according to the Centers for Disease Control and Prevention (CDC), “is a group of disorders that affects a person’s ability to move and maintain balance and posture.” It is the most common physical disability in childhood. A CDC study indicates that there are one to four cases of CP for every 1,000 live births. In Ghana, however, cases of CP are particularly high, affecting one in every 300 live births.3 What exacerbates the problem in the country is the limited opportunities for treatment and case management.

I had a difficult childhood as a result of my condition, becoming the object of ridicule and bullying. My classmates made fun of me and often called me saliva boy. They would not play with me, fearing that my condition was contagious.

To maintain my sanity and survive their bullying, I resolved to ignore them. At times, however, I could not stand their persistent bullying, and I learned to fight back. Ultimately the attacks lessened, and I had time to concentrate on my studies.

Tackling Cerebral Palsy

At church I developed good relationships in my Sabbath School classes. My father was the children’s ministries coordinator and assistant superintendent in charge of children’s Sabbath School. Most of the children were my friends, and the other teachers were actually my family members—aunts and uncles. I had the opportunity to participate in all the activities—singing and reciting the Bible texts during thirteenth Sabbath programs.

In the Pathfinder Club my father was the director and my mother an instructor, so they were sure to include me in all the programming. I went camping, kayaking, rappelling, and mountain climbing. Recently I went through the training and was invested as a Master Guide. I now teach a Pathfinder class in my local church.

It was the Master Guide Leadership Training that gave me the idea to start the Popo Cerebral Palsy Initiative.   

Living with cerebral palsy and knowing how it impacts its victims and their parents, I made it my mission to bring CP awareness to the public, particularly to parents and caregivers who bear the brunt of the condition. I also figured that if teachers and pupils understood the condition, they would be more considerate when dealing with people with CP.

In October 2017 I founded the Popo Cerebral Palsy Initiative, a nonprofit organization. My goals were to encourage parents (especially mothers with CP children); educate the public on the condition; and support families living with the condition. My vision is to create an all-inclusive society that accepts and respects the fundamental human rights of all persons, including people with CP, and offers equal opportunities to all people.

My family and a few friends helped me promote the initiative on social media and provided me with the much-needed startup funds to help me realize my dream. I have been fortunate to have individuals who share my vision.4

I see my nonprofit organization as participating the mission of the church. We too view disabilities and loss through the transforming lens of possibilities. We believe in what individuals can do and what they can become because of God’s grace. Central to our work is advocating for the recognition of dignity and respect for every person so that their unrealized abilities can be channeled for the gospel. We work closely with our local conference to develop programs that address the conditions of people with cerebral palsy.

1 https://www.childbirthinjuries.com/cerebral-palsy/statistics/, accessed Feb. 6, 2024.

2 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6779979/, accessed Feb. 6, 2024.

3 https://www.childbirthinjuries.com/cerebral-palsy/statistics/, accessed Feb. 6, 2024.

4 Among those who offered to act as directors and secretary, respectively, to my organization were the late Elder Nana Kwaku Gyamfi, an alternative medicine practitioner; Mrs. Alberta Rockson, a physiotherapist; Mr. Benjmin Sackar, a lawyer; Ms. Jacqueline Asante-Mensah, a lawyer; and my sister, Angela Akogyeram. These graciously volunteered their time, money, and services to the foundation.

Nii Anyetei Akogyeram