OYEWALE OLUWASEUN
F OR several years, Benola: A Cerebral Palsy Initiative, has been at the forefront of advocating for persons living with Cerebral Palsy – a group of disorders that affecet an individual’s ability to move and keep balance/posture, either as a result of injury to parts of the brain, or a developmental problem.
A not for profit organisation, Benola’s vision is to ensure all those affected by Cerebral Palsy fully develop and exploit their potentials. By working to provide care and support for affected families, engage in capacity building for professionals in the health care sector, it is raising awareness about the disorder in Nigeria and Africa at large. In this chat with SOLA OGUNDIPE, the Founder/CEO of the Organisation, AVM Femi Gbadebo, speaks, Excerpts.
We have done a lot of work in the area of Cerebal Palsy disability management and with each day, our vision gets clearer. Part of what we are aiming to do is to change the mindset of Nigerians about Cerebal Palsy.
We have been getting a lot of attention and beginning to attract a lot of health professionals that are helping us to have a clearer vision. Because we are getting a lot of awareness, we find a lot of families that are in need. Some people are coming to us and are asking questions.
AVM Femi Gbadebo
Indeed the landscape of disability has changed tremendously in the last four years because we are talking about it. We are talking about how to get things better. We are talking about issues around disability. We are focusing more on what we missed out and what more we can do.
Census: The recent policy announcement by Lagos State comes to mind. It is great to note that you have an office of disability management, and a law or act for disability. You have now recently endowed N500 million but where is the machinery to get things functioning?
If you say you will give free transportation to the disabled – beautiful statement – but how does it work without a census of the people who are disabled? Without a form of identification and without classifying disability, there is still a problem.
For instance, if I need to get a ride on the bus, and I am using a walking stick, everyone will agree that that I am disabled.
But what if I am deaf and dumb? How will people recognise that I am disabled? Or is it the mother and her child who gets the free ride or the blind man who must go with an escort? There are so many things to be put in place. Advocacy
There must be massive advocacy to sensitise the people about this movement and get them to abide by it so they will be the ones saying ‘don’t you know the man is blind?’
In fact, just give them identity cards, however, this cannot come into force immediately. There must be a period to put everything in place. So to me, these are some of the reasons why things have not really fallen into place. Our people are yet to appreciate the need for a total orientation of disability.
It must start from the top where policy is being driven. Those at the top must set example.
Disability Act
If you get me to a governor and you say we need to do some training for your people and the government calls social welfare, all they are going to say is that we have it done in our plan. And even if they agree, you might be told there is no budget for training, or that they will package their own training, but what we are talking about is that we need to draft or pass a Disability Act at the National Assembly. We need the people who should be passing this Act to be properly informed. All of us understand a little about disability, but the problem in Nigeria is that we are coming from the old school where disability is narrowed to what we can see or at least feel.
Physically, we can see the man is blind, so that is disability, but what if the disability is invisible? Assuming the man is diabetic or has high blood pressure and there are many things that would affect his ability to function well? He needs financial assistance from the system, but this is difficult for people to accept as disability.
Diasability management
We belong to that old school of thought coming from so many years of perception that disability management is just about a Home. For the young people, we say, find them a home and for the old people, let’s also find them a Home. There is no machinery that monitors what is happening in the Homes or ensuring the people get a decent quality of life.
Training parents
When we talk about training some parents, what I mean is getting a parent to first of all know that even though this child has a disability, he also has potential. But what will that child do?
One common question that I get from parents is what next? After going through the stress of raising the child, now the child has graduated and no one wants to employ him or her. That child has potential but can’t get a job. For younger parents, it turns into a negative thing. It works in reverse except we can make things happen.
Continuous advocacy
So what we have decided to continue to do is advocacy. We are going to build capacity for everybody from medical prefessionals to parents and care givers. We are going to provide information and counseling services.
As far as information is concerned we have built what I consider to be the most authoritative website on Cerebral Palsy today. Benola is the only organisation looking at Cerebral Palsy and even disability from an intellectual point of view. We do a lot of counseling particularly through the telephone. We are working with a lot of people from the Lagos State University Teaching Hospital (LASUTH).
Curriculum on disability
We have actually come up with a curriculum that we believe must do something to ensure in a few years, all doctors will have an understanding about disabilities and we at the stage of trying to see how we are going to make it part of their training.
We are at the stage of using some of the people who are in the system to see how we can at least prepare lectures for them. Incidentally, when we met the former Lagos State Governor, Mr Babatunde Fashola in 2014, we introduced the idea and directed the Minister of Health to make sure that LASUTH began to inculcate childhood disability into their curriculum.
Syllabus: We have also concluded a syllabus for orientation of members of the National Youth Service Corps (NYSC) while in camp. We’re going to the private primary schools and secondary schools and we have visited several in Lagos.
On certain occasions we go there to talk to them because we believe that can guaranty the future generation that will show the right knowledge and empathy to the disabled and the able.
We just got an approver to do some awareness in the University of Lagos and we are in the process of finalising how to do that for them and we hope it will spring up to other universities or tertiary institutions.
From my own assessment several of the facilities and the Homes that we’ve seen around are not adequate and are not operating standard procedures. It’s an unfortunate development that has marred the wonderful job that Lagos State is doing.
SOURCE.. VANGUARD
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