Retired Air Vice Marshal, Femi Gbadebo, is the founder and chief executive officer of Benola, a cerebral palsy initiative which is a non government organisation (NGO). In this interview, he discusses challenges facing people living with CP, obstacles hindering them from achieving quality living, among others
It is almost three years since you ventured into advocacy on cerebral palsy (CP). What influenced you to work in this area?
My wife and I have a son who will be 19 years on June 14. He was born with cerebral palsy (CP). It took us a while to come to terms with the condition. At the end of the day, we have tried the best we can to give him a good quality of life. Despite having taken him to places like India, Germany and the United Kingdom (UK) for assessment and possible management, we did not achieve what we wanted to achieve but our knowledge of CP improved because of exposure and we came to realisation that there is so much that can be done to improve the lot of people living with CP in this part of the world.
One thing about my wife and I is that we have never hidden our child. We have never felt shy to talk about his condition but we find that many people with children living with CP would rather not talk about their children living with disability and it is because of the society, misconceptions, stigma and fears that they will be rejected. In the process of talking about our son, people started talking about me setting up an NGO and /or a home. But we came to the conclusion that if we are going to do this thing we must do something radical. So, we came up Benola which is an academic initiative that will address perceived problems or inadequacies around CP.
What did you plan to achieve by taking your son abroad?
At first, we were looking for a cure or reversal of this negative situation but after getting a second opinion, we were educated on the nature of condition. CP is cursed by a breakage in signals or damage to a part of the brain that sends signals to the motor, the movement part of the body and because of that there could be muscle problems in an affected person. CP could present in stiff muscles, it could be flaccid. These combinations of things cannot be reversed. On the average, a person living with CP is intelligent; he has emotional feelings; and knows what he wants. We also found that because the brain is not completely dead it can start a rapid development process of its own; we need to help the child living with CP to maximise his potentials. This can be achieved with whatever little that the child can do in addition to helping the child, assisting him exercise and by engaging the child. What that means is that we need to practice early intervention. For a child living with CP. This will give the best result.
How early should this be done?
As early as possible. By the time a child is approaching three to four years, the brain has finished developing those elemental developments and if parents/guardians have wasted that time running around, the child would have lost the ability to develop certain skills. So, one of the things we are pushing is early intervention, from six to nine months so that parents can accept their child’s situation as early as possible. Once the parent accepts the child’s situation that there is no cure, then that parent is no longer looking for cure but management of the condition. If a mother gets a nanny and house help and asks them to do everything for that child she may end up with is a child that will not able to do anything for himself. But when she pushes the child and observes the child is willing to crawl, willing to use the feet to do what the hand will do; willing to roll on the floor to get to an object, then the child’s brain, vision are exercised, that child will develop interesting skills for himself.
What should parents look out for?
What to look for include: a child not holding the neck steady, clenching one or two fists, tending to lean to one side, drooling, having frequent seizures, not hitting milestones, and inability to suckle breast milk, these are signs that there is a problem. CP can be identified and diagnosed by a neurologist who does a brain scan, a CT-Scan or any test to know the signal movements of the brain.
When a child is showing symptoms of CP where should parents or guardians go for help?
The Lagos University Teaching Hospital (LUTH) Idiaraba, Lagos, the Lagos State University teaching Hospital (LASUTH) Ikeja, all teaching hospitals across the country, some private hospitals, among others have capability to detect and diagnose CP. Although, parents of kids living with CP may go to a doctor, but it is better to go to a paediatrician. They have the competence to care for childhood complications. A competent paediatrician will know where to refer such a child to for the right kind of test. Similarly, a neurologist will confirm those tests.
Is Nigeria on the right track with regard to the management of disability?
There is lack of information and when there is lack of information there is misinformation. Misinformation has overtaken the environment. Until we get everybody to understand what disability is, where it is coming from and where it needs to go to, there is problem. Until we get people to understand that disability is not the fault of the child; it is not the fault of the parents; and until we understand that a disabled parson has unique skills and capabilities which if properly nurtured can turn them to be very productive members of society, there is a gap. You can find disabled people who are bread winners for their families. Government is not helping and private sector is not helping either. Although, we have structures in place for managing disability such as the Lagos State Office for Disability Affairs (LASODA), a lot of these things are on paper. Are they functioning? Are they appropriately manned? Are the available manpower appropriately trained? Do they understand what to do? Where are the enforcement policies or the machineries to enforce this law? That is where the problems come from.
At the federal level, we have disability affairs under the Ministry of Women Affairs. What do they do there? Do they have the manpower? I tell you: no. Though, the people that are supposed to help manage disabled people including the therapists, the social workers are being trained from institutions like the School of Occupational Therapy in Oshodi, government is not employing them. Hence, at the end of the day, they find something else to do. Do we have paediatric nurses? Do we have paediatric physiotherapists. If it is the physiotherapist that will manage adults that will manage a nine-month-old kid, he will injure the child because the child requires delicate management and knowing what to do. First, those to manage people with disability will first qualify as doctors, nurses, etc before going for special training as paediatricians. Most of our hospitals do not have people with special skills like that. If we go to schools, are there special education teachers? Until you train a teacher as a special education teacher, they cannot handle children with disability.
You see, we have the intention but the will and the machinery to do it is not there. Government is talking about creating employment, the amount of job that will be created if government decides that every hospital must have its right complement of therapists, paediatric professionals, etc., you will see meaningful jobs exploding, but that is not what the government is doing now. That is one of the things that Benola is out to do; it is out to educate governments, policy makers, the private sector and those driving the NGOs to get them to work right. Whatever is done for the disabled will benefit all of us because we are all going to be disabled at some stage in our lives either because we end up having an accident or develop major illness that put us in a wheelchair. We may become bed-ridden, get old and unable to do certain things for ourselves. So, whatever facilities are provided for the disabled are not just for the disabled they are for all of us. Besides, it is these things that make the country an acceptable member of the international community. We must put disability at the center of whatever we do. If we are building a bank, a hotel or a flyover, we must think about the disabled child, how he will access the place as well as where he will sit?
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