In this report, Demola Ojo, Gboyega Akinsanmi in Lagos, Damilola Oyedele in Abuja and Dipo Laleye in Minna write on the challenges faced by children living with disabilities with a special focus on cerebral palsy and how an NGO, Benola, has been working to bring their plight to the front-burner of national discourse

The incident recounted below is a true Nigerian story: A mother is in tears as she places a call to a friend, complaining about the injustice of a system that has no place for those living with special conditions. Her 22-year-old son who lives with cerebral palsy, a neurological disorder, is finally ready to write the West Africa Examination Council (WAEC) exam, a prerequisite to gaining admission to a Nigerian university.

Cerebral palsy is a group of permanent movement disorders that combine to limit an individual’s ability to move and keep balance as a result of injury to parts of the brain, or a developmental problem. Often the problem occurs before birth or soon after. The condition results in different disabilities in each child from simply being clumsy or awkward, to being unable to walk.

Often, symptoms include poor coordination, stiff muscles, weak muscles, and tremors. There may be problems with sensation, vision, hearing, swallowing, and speaking. Often babies with cerebral palsy do not roll over, sit, crawl, or walk as early as other children their age.

Because of his condition, the young man didn’t start school until he was 10. Many of those whose case of cerebral palsy is not so severe get to go to normal schools in Nigeria, if they are admitted. They are the lucky ones. There are no specialised institutions that cater to the needs of those living with this – or any other – neurological disorder.

The mother of the young man is adamant her son – despite all the challenges of his neuro-disability – would do exceptionally well in the exams if given a fair chance. His principal agrees with her. The boy is ready for his knowledge to be tested, under the right conditions. But his writing is bad, and his pace is very slow. It would be unfair for him to write the exam under normal conditions so there must be special consideration right? Well, not quite.

Along the line, someone had mentioned that there was a process called ‘Special WAEC’; the young man answers the questions and someone else helps put it down on paper. But the principal was not comfortable with the arrangement and decided to go and find out at WAEC. The feedback was negative.

The response was that WAEC only recognize the blind, and the deaf and dumb as special students. Every other person sits for the normal exam. The reasoning being that, if you can get to the highest level through the normal school system, then you should be able to write the exam the normal way. And therein lay the mother’s agony.

When THISDAY got in touch with WAEC, its Head of Public Affairs, Mr. Demianus Ojijeogu, said candidates with special needs are given the opportunity of fair competition. He argued that the fact that the candidates “have challenges with their fine motor coordination has nothing to do with their intellectual abilities.”
He pointed out the council’s policy towards this class of students “is to make our examinations accessible to them,” compelling the examination body to make necessary arrangement for them to write their examinations with some considerations for them.

One of such considerations was that the school “…will organise a writer for such a candidate. The candidate will dictate the answers to the questions and the writer will write the answers in the answer booklet. A tape recorder may be provided for the candidate wherein the answers to the questions will be recorded in a cassette for further necessary action by council.”
According to him, the council works with the schools or exam centres to ensure the interests of these candidates are properly taken care of.

“If the examination is internal, the school would provide a teacher from that school as an invigilator who would guide them while the examination is on. However, if it’s external, the council does not provide any special supervisor or invigilator for them.”

Ojijeogu also touched on the subject of timing. He explained that the council had approved an additional 50 per cent of the time allotted for a paper for all physically challenged candidates.

“If a paper is for a period of two hours, additional one hour will be given to the challenged candidates.” He therefore said making proper arrangement for this class of students was one of the rationales the council always “asks all candidates to indicate the type of disability they were suffering from so as to enable us to know how to cater for them.”

A few conclusions can be deduced from the statement by WAEC. First is that policy does not necessarily translate to practice. Secondly, is the assertion that “…if the exam is external, the council does NOT provide any special supervisor or invigilator for them.” Furthermore is the blanket time of 50 per cent extra for “all physically challenged candidates”, an indication that different conditions are lumped together without any attention to individual peculiarities.

In the case of the National Examination Council (NECO), it is still not clear if it allows special needs candidates use aides during the exam. A top official of NECO who asked not to be named said the responsibility lies with the schools. However a lecturer in one of the special needs schools in Niger State said the issue of the students writing public exams does not arise as most of them pull out before SS3. “We are trying to set up a new department where these people can learn trades. Some members of the public are funding this project. As at now we don’t have any of them in the school.”

NECO officials however confirmed that “physically challenged candidates” were always given special attention during examinations. But the examination could not say how many of such students had sat for the examination in the last couple of years and their performance.
NECO confirmed that private schools and unity schools in the country have been presenting special needs candidates for its examination but unlike the visually impaired who have special gadgets, there are no special tools (read considerations) for cerebral palsy candidates.

In fact, the outlook for cerebral palsy students seems to get dimmer by the day as most schools for the physically challenged have been rejecting this category of students for the past four years according to reports from Niger State. The refusal of admission to these students followed the realization that “they are very expensive to maintain”, in addition to lack of experts to manage them.

“Some parents who are fed up with these children only come and dump them with us and disappear,” a senior staff at the school for the Physically Challenged in Minna said on condition of anonymity. “Now we don’t admit them again, we don’t know what happens to the education of these children,” the source said.
A few years ago, the school registered some of the children, “…not more than four, for NECO and WAEC but we cannot say what happened to them.”

Private Initiative to the Fore
With the apparent apathy in official circles towards those living with cerebral palsy in particular and other neurological disorders in general, succour has had to come from non-governmental initiatives, with individuals striving to fill the gaps in what is an all-too-familiar Nigerian DIY syndrome. One of such initiatives is Benola, an NGO whose mission is “to become the lead supportive agency on cerebral palsy in Africa and a leading advocate for the rights of those living with limitations.”

Air Vice Marshall Femi Gbadebo who retired eight years ago after 35 years of meritorious service as an Air Force pilot, co-founded Benola – out of necessity – with his wife.

“In 1996, my wife gave birth to our third son Olaoluwa and he was born with cerebral palsy. That’s the first time I heard about that condition,” AVM Gbadebo told THISDAY. “I was not a total novice to disability because for some reason I had known a few people who had disability in primary school and other people who had children with disability so I guess it helped us to take it in our stride.

“Of course, the Air Force came to our assistance and we were able to take him to Germany and a few other places. And as I rose in my career I also went on courses to India, to the UK…wherever I travelled in the course of my career, he followed us and in the process we looked for a possible cure at first, until we found out there was no cure.” From that moment, their attention turned to how to manage the condition.

There was a stage when his wife had to relocate to the UK for three years based on friends’ advice “…that we could get him into the system and then you don’t have to worry about medication and all that. And it worked. But when I was going to retire, my wife became a little concerned about how I was going to cope with retirement and decided to come back home.”

The Gbadebos have seen (and felt) the effects of cerebral palsy up close. He talked about the state of his son at the time. “His condition was life-threatening; his spinal cord had twisted so bad that his right lung was on the verge of collapse.”

Having been away from home for a long time due to his career, he decided it was time to spend more time at home. “You see, if you have a child with a disability, somebody who sees him all the time does not appreciate the deterioration of the child but the person who comes every few weeks or every few months, notices a deterioration from the last time.

“And then you also notice over-pampering on the side of the mother. Because mothers tend to blame themselves, tend to be overprotective, and the result is that the child is not pushed to their maximum; and a disabled person will only become as good as possible if they are pushed to exploit whatever options they have.”

According to Gbadebo, if a mother is overprotective, her response towards those who want to challenge her child would make them back away. So Gbadebo who says his life is that of a trainer decided he would stay home and pass on knowledge. Unfortunately, he was rejected at many of the places he offered to work, including the Lagos Business School.

“Their main issue was I did not have a degree, even though I’ve been teaching at senior levels in the military for years. So I did a course there but even after the course, it was still difficult because Professor on a flyer is more attractive than AVM. So even after doing some pro bono work for some of them, they still didn’t call me back,” he explained.

It was in the process of looking for ways to show what he could do, that a medical doctor friend asked him sometime in 2012 why he was wasting time looking for someone to give him a platform, when he could create his own platform.
“He asked me what was wrong with my child and when I told him, he advised me to talk about that. Initially, I thought, ‘what was there to talk about cerebral palsy? But then, I decided to do what the military has thought us, which is to break things down and see how you can fix it. And that is what I decided to do with disability management in Nigeria.”

Gbadebo sees a big lacuna that needs to be filled in the way disability management is approached in Nigeria. Raising a child with cerebral palsy has meant that himself and his wife have had reason to visit homes for children with disability, motherless babies homes and doing charity work.

“I’ve done my own bit of looking around. One thing that hits you is that they’re (homes) not receptive to volunteer work which at first I found very strange. Another one is that you can’t visit them at will. You must book a prior appointment and there must be an approval by the boss that is not always there.

“The point is, when you look into it, these are parts of an abused disability management system that has become entrenched in Nigeria and a lot of African countries which is to treat them with leftovers; pity and whatever you can afford to spare.

“As a result, you find homes and schools that are catering to an average of 30 children but with no real expertise, especially when you’re talking about disability. They will tell you they have some consultants or physiotherapist that come around but the staff there have no real training. They don’t have the capacity to help parents in terms of counselling or sourcing equipment to help with their children. And they really don’t have capacity to take on any extra child.

“There is a shortage of places to go, there is a serious lack of capacity in what people are trying to do. When they look for sustenance, all they do when they come out to speak about is ‘come help me take care of these children.’ The end result is that we have what I would call a zoo mentality in Nigeria where people take whatever they have, they go to a home, see the children, maybe snap some pictures with them to boost their own ego and maybe post on facebook, and then they go for another year or so.

“And if these people (homes) are able to get enough of such visits, it sustains them. They don’t understand financial management, so for example if you give them a hundred bags of rice and they don’t need more than 20, you see them selling the rest. So there are a lot of things that have affected their ability to grow and that has also affected our mentality on supporting homes.

In as much as I understand what’s going on, I will tell you the truth; it’s all because collectively, we’ve not been able to understand disability and disability management,” Gbadebo said.

Gbadebo took a swipe at the attitude of organisations in Nigeria towards their corporate social responsibility. “If you go to any corporate organisation, they see CSR as something handled at a low level. So you have a manager corporate affairs, who has a budget per quarter of say N500,000 or one million or five million to reach out to as many homes as possible around the area. So he’s looking at around 250K per place and it is something that he will document and show his superiors that they’re being projected. That’s why they paint buildings, renovate toilets and stuff like that but they’re not doing much more than that and everybody is happy they’re doing CSR.”

When it comes to disability, there is also the issue of stigmatization to contend with. “Because there is no knowledge, people are suffering. The person who has a child with disability is blaming himself and his wife, is blaming God, and is totally devastated. His friends are querying his faith. There are people who blame the woman…’ Oh, she was wayward when she was young, it’s God dealing with her…’ There are those that will even keep away because they don’t know if these things can be contagious. And so you find people ostracized.

“Even when they go out in public with the child, the same issue. I was telling someone, if you take a child who is drooling in public and has occasional seizures to a family party, there are people who will say, ‘I came here to have fun now, why bring this child? Leave him at home’, forgetting that leaving him at home means the mother has to stay at home too.”

In setting up Benola, Gbadebo decided that if they were going to venture into disability management, it must be from a different angle. “It must be from an angle that will cater to these things we’re talking about: awareness, capacity building and even referral services, where we know as many homes as possible and the services they are rendering.”

He bemoaned the lack of capacity. “As I speak to you now, the average Nigerian doctor does not understand neurodevelopmental disability. It’s not their fault. No doctor is taught in-depth. That’s why they are called GPs when they graduate. It’ s only those ones who have taken the extra time to study paediatrics who understand how to dispense drugs to children.

“And because most of those that go to see the doctor present the symptoms; ‘my child up till now cannot walk, my child is still drooling, my child’s neck is not steady…’ If you understand neurodevelopmental disability, all you have to do is a CT scan then you will see signal interruptions and you know what the issue is.
“Most times they milk these families of a lot of money until they either get fed up and go somewhere else, or give up.”

Gbadebo also advocates support for parents of children with disability. “Everybody asks how the child is. Nobody asks how the parents are doing. What can we do to help the parents? That’s one of the reasons we started Benola.”

Benola: Bringing Fresh Ideas
According to Gbadebo, they identified possible hostility to their mission right from the beginning. He’s not a doctor, neither is his wife. Nor are they special education practitioners. They couldn’t just come out criticizing the status quo without offering something better. So they decided to build capacity and then gain the confidence of those in the medical, special education and NGO fields.

Benola also came up with a roadmap preceded by a couple of workshops. “We got a consultant who identified people in special education from universities spread out across Nigeria as far as Calabar, Kaduna, Jos. Then one of my board members came up with the idea that we had to get government involved so we approached the Lagos State Ministries of Education and Health.

“We had the first roundtable meeting in April 2013 and it wasn’t easy getting most of them to come. We had to pay transportation and in some cases honorarium. One of the professors that came, came out of curiosity because nobody in this country had ever put together a multi-disciplinary team of medical practitioners. Ophthalmologists will hold theirs, dentists will hold theirs and so on. They never come together to sit down and discuss issues. We all learnt, and we decided we needed to do a few more.

“After the second one, we realized that myself and my wife were the only parents there, so there was a need to hear from other parents. So we came up with the first cerebral palsy family forum. We got parents from Port-Harcourt, Abuja and other places. We learnt a lot also from that.”

With time, the specialists started getting more involved. Instead of being paid, they switched to being part of the project. “We started to task them, and in the process, we got a lot of useful papers. At the end of the day with their help, we were able to put a document together which we called a roadmap for cerebral palsy in Nigeria in February 2014 to coincide with our official first anniversary.”

Government’s Input
AVM Gbadebo and his team believed the roadmap would open doors for Benola. They sent to a number of governors, as well as a few service chiefs. At a point, then Lagos State Governor Babatunde Fashola called for a meeting.
“At the end of our interaction, he was visibly impressed and asked us to come and build a centre for cerebral palsy in Lagos. He promised us a piece of land and also said we should come and do training for Lagos State, to build capacity for his people. Then he gave us a bus. At that time, we didn’t have capacity to build a centre. It wasn’t easy, and who was going to develop a curriculum?

“We went through the whole of last year developing a curriculum. We realized that all these homes don’t have literature about cerebral palsy and what to do. We have come up with a few publications ourselves.”
A curriculum was developed for the NYSC, “since they go to rural areas and are also the next set of parents.” A curriculum was also developed for universities so more people gain knowledge and know how to deal with neuro-developmental disabilities.

“But all these will not go anywhere if the general population do not understand and are not willing to accommodate families that have someone with neuro-developmental disabilities. And so we want massive, largescale advocacy, to enlighten people about cerebral palsy.

“It’s the kind of thing government can do but sadly, government in Nigeria is not structured to solve problems,” he lamented. “Without meaning to look down on people in government, you’ll find that the best brains in Nigeria are not in government. That’s why a place like Lagos State for example has to start bringing in consultants to get things done.

“A lot of our civil servants have risen to the top merely by staying long enough in the system. And when you get the wrong man to the top, any smart guy downstairs is either pushed out or learns very quickly to keep quiet. So you don’t find people in government doing research or the type of work Benola is doing now.”

Speaking to THISDAY about the conditions of special needs students, the Chairman of the House of Representatives Committee on Basic Education, Hon. Zakari Mohammed said the legislature is concerned about the rights of all Nigerians, and would make the needs of special people a priority.

He disclosed there was a bill that was sponsored during the last assembly, that was meant to address all sorts of needs of special people, adding that the bill would be re-introduced in the current assembly.

“The bill is all-encompassing to address all their needs. For instance, several of our public buildings do not even have consideration for them during constructions, even in some hospitals, there are no wheel chairs access,” he said.

“The fact that they have special needs does not mean they should not attain whatever heights they wish to attain. They can be whatever they want to be, but the average student is just faster, that’s all. So any legislation that borders on their welfare is a priority for this House,“ he added.

The situation was however different at the Federal ministry of Health, Abuja where officials declined to comment on what government was doing to help the plight of those having this medical condition. THISDAY was directed to speak with the Director of Family Health in the ministry. A visit to the ministry last Wednesday and Thursday yielded no result as he could not be located anywhere. Calls made to his line were also not picked.

Unlike many states in the federation, the Lagos State Government had long recognised the potentials of children, who are physically challenged at large. On this ground, the Permanent Secretary, the state’s Ministry of Education, Mrs. Olabisi Ariyo said empathy of successive administrations for this category of students had defined its special education policy.

She admitted that there was no definite policy for the cerebral palsy students. But the permanent secretary noted that the state government “has special education policy,” which according to her, accommodates the interests of all children living with different kinds of physical challenges.
Ariyo thus pointed out different areas, which she said, the state government had provided life-saving intervention for the cerebral palsy students. Specifically, she said the state government had established two different schools for students suffering from cerebral palsy.

The schools are Modupe Cole Memorial Child Care & Treatment Centre and Otundaolu School for the Physically and Mentally Challenged, which the permanent secretary said were located at Akoka and Surulere. She said the schools were specifically designed to meet the needs of the cerebral palsy students. Since their establishment, she said, the schools had helped many of these students to harness their potentials and realise their dreams.

Aside, Ariyo explained that each of these schools “has in-built vocational centre, where the special students are trained in soap-making, bead-making, barbing, hairdressing, hat-making and tie & dye among others.” Apparently, she added, the student has proved their dexterity in different vocations of their choice even though they are physically challenged.

For those who demonstrated ability to pursue rigorous academic studies, the permanent secretary disclosed that the state government “has a tradition of sponsoring their tertiary education.” She disclosed that a good number of them gained admission “to College of Education, Oyo-Alaafin. Some studied hospitality while others pursued career in catering services.”

Ariyo also spoke on different kind of aids and support, which the schools “have been giving these students while writing their internal examinations. We always make arrangement for special examiners, who can help them write while they dictate answers to questions.”

The permanent secretary added that the school had created special classes for the cerebral palsy students “to enable them write their papers with little or no distraction,” which she said, had yielded much expected outcome. She said some of the students, who passed through the schools, “are teaching and training others in the schools after they completed tertiary education.” AVM Gbadebo reaffirmed his belief that there’s a long way to go, starting with an attitude change. ”This country needs to begin to recognize that there are a sizable number of people living with disabilities. In fact, I will put it at 25 million people. Even though if you go to any government agency, they’re likely to say it’s about two million or less. That’s because they are only looking at the blind, deaf and dumb and those sitting on a wheelchair or using crutches.

“Sadly, those using wheelchairs or crutches who are upwardly mobile won’t show up when you’re talking about disability because they are comfortable. The bulk of the people you see when you talk about disability are close to destitute or beggars, and that’s why the figure is so low.

“But when you look at the complex disabilities that are out there – asthma, high-blood pressure, diabetes, learning disabilities and so on – you realise that it’s one huge number, and they all require some form of assistance from government and understanding from the population.

“Things like this need to be brought to the forefront like the young man’s case… if he does not get the right result in his WAEC, he cannot go to university.”