Every October, stakeholders, including people living with Cerebral Palsy (CP) often embark on special march to create awareness on disability and mark what they tagged ‘A Walk for Cerebral Palsy’ in support of World CP Day in the country. In an interview with CHIOMA UMEHA, AVM(rtd) Femi Gbadebo, a father of a twenty-year-old with CP and co-founder of a non-governmental organisation known as Benola, a Cerebral Palsy Initiative with his wife, Alaba explains that CP is a silent affliction in many Nigerian homes. Consequently, awareness creation can help families of those living with the condition. Excerpts:
What is World CP Day about?
Of course, we realised that you have to encourage people. And in this part of the world, the stigma is so bad. Some people kill their children; some lock them in rooms. Meanwhile, these children are celebrities abroad. If a child has a disability abroad, the government takes care of the child.
You are paid as a primary care provider who takes care of that child for the government. Their health care services are free. You have disability friendly hotels, parks, banks, airports, schools, Churches etc. The government makes sure that public places are disability friendly. They make sure that people in wheelchairs are able to access facilities.
We want to create such awareness in Nigeria that is why Benola, a cerebral Palsy initiative, organise a walk to mark World CP Day. One of the objectives is to encourage the Nigerian government through the National Assembly to pass a law that will make people with disability not to be disenfranchised in the society. The law will ensure that every building that will be built in Nigeria be disability-friendly. This is part of our advocacy. We are just starting. It has been four years and we know we will get there.
We believe that there will be a time in Nigeria’s history when a bill will be passed ensuring that every single structure built in Nigeria will be disability-friendly. It will be done so that disabled people can go to Church. Right now, they cannot go anywhere. The buses are not built to put wheelchairs. In advanced countries, buses have rams that enable people in wheelchairs to enter buses. But here they can’t go anywhere. We don’t even have wheelchairs to give them in the first place. So, a lot of things have to be done for people with disability.
You child has been living with CP since 20 years. What is your experience about the condition?
Cerebral palsy Cerebral palsy is caused by abnormal development or damage to the parts of the brain that control movement, balance, and posture. This damage affects a child’s ability to control its muscles. Most times, not all the brain is damaged. If a child with cerebral palsy can talk, then that part of the brain is not damaged. But, you might notice something about the posture and movement. The brain cannot tell the hand to move when it is supposed to move because that part of the brain that does so has been damaged. A lot of children with cerebral palsy are highly intelligent. Sometimes, the condition does not affect the intelligence quotient of the child, but the movement and posture. A lot of them are stiff and floppy. Most of them are on the wheel chair because they cannot walk.
Does this suggest that cerebral palsy affects children differently? How have you coped with your son?
Yes. There are different forms of cerebral palsy. It is possible to say no case is all together the same. Cerebral palsy may affect one side of the brain; it might affect the two sides of the brain. The function of that part of the brain is impaired. That is why people living with cerebral palsy have different deformities; some cannot walk, hear or speak, while for others it is coordination in movement and reasoning. Some children with cerebral palsy are able to go to talk, walk and even study, but some cannot do any of these.
My son has total cerebral palsy. He cannot walk, talk, and, of course, go to school. He is always in a wheelchair. None of the limbs is working. If you tell my son to point to his nose, he will point to his nose to show you he knows what you said, but it will take him two minutes to get his finger to get to his nose. We then realised that the intelligent part of his brain is working. So, cerebral palsy can be typified based on the area of brain damaged. There are severe cases and mild cases of cerebral palsy. We have seen Master’s Degree and Ph.D. holders with cerebral palsy.
Many people hide this kind of disability. Why did you break the silence concerning your son’s case?
Once you meet me the next three minutes you will hear about Olaoluwa. I will tell you about him so that you are not shocked when you see him. I don’t hide him. That is why it was easy for us, four years ago, to come out. Maybe it is the kind of person I am. If you love me, you have to love my boy. I don’t believe in hiding anything. I have never hidden my son from day one.
How many years have you been catering for your child?
Olaoluwa is twenty. June 14 will be his twentieth birthday. And it’s been twenty years for me. And I wouldn’t tell you it has been easy, but because I am a Christian, I do not believe that God made a mistake of giving me a child like him. He is aware of the situation. He gives me grace. I take one day at a time. I cannot do more than that. At the end of each, we thank God and when a new day begins we pray for grace.