You probably have encountered persons living with cerebral palsy and treated them with disdain; but two persons living with the condition in Nigeria have been in the fore-front of championing awareness and showing the way forward. Gboyega Alaka reports
Aquick internet research of cerebral palsy and this short, emotionless expression jumps in your face: A congenital disorder of movement, muscle tone or posture. Furthermore, it says, “More than 100 thousand cases in Nigeria.” And further down in bullet points, it says: Treatment can help but this condition can’t be cured. Requires a medical diagnosis. Lab tests or imaging rarely required. Chronic: can last for years or be life-long.
An explanation by Mayo Clinic, an online health magazine however puts it in clearer terms: “Cerebral Palsy is a disorder of movement, muscle tone or posture that is caused by damage that occurs to the immature, developing brain; most often before birth. Signs and symptoms appear during infancy or preschool years in general. Cerebral palsy causes impaired movement associated with abnormal reflexes, floppiness or rigidity of limbs and trunk, abnormal posture, involuntary movements, unsteady walking, or some combination of these.”
Before meeting highly brilliant and audacious Olawale Afolabi Dada in person, and especially Tobiloba Ajayi, first on TV and later in person; the image, that this reporter had of persons living with Cerebral Palsy or CP for short, is of a human, virtually unable to use his limbs and muscles, unable to sit steady or speak well – of a helpless person, lying on his back and perpetually requiring help for virtually all activities.
However, Olawale in just a few seconds banished these impressions. Yes, he was different; but only slightly. And that was because he navigates his way indoors with the aid of a walker. And his speech is slower, just a bit, but clear. Aside these, his senses are sharp, his responses to questions and interactions, accurate, and he is quite a host. Never a dull moment. His introduction of himself as “disability advocate and real estate consultant” ultimately sealed it for this reporter. This, surely, is not a guy to be pitied. He is standing up to life squarely.
As a disability activist, Dada’s main concern is the wrong impression Nigerians largely have of people living with conditions like his. “The narrative out there is that people living with disability are no good. They are people who offended the gods or whose parents have offended the gods or God and the punishment for them is to be given this sort of a child.”
He is also not happy with the way folks in his country tend to “narrow down people with disability as objects of pity or welfare projects” and how they always seem to focus on their disability.
Dada would prefer a situation where “people see me first as a person, with my talent, before my disability.” To this extent, he said he had to print the words: ‘I’m a person, not a disability’ on his complimentary card, just to clear the air ahead of any official or business interactions.
“People don’t even believe that someone in my condition can get married. I guess that’s why images of my wedding in 2016 literally went viral, with all the blogs posting them. Nigerians take cerebral palsy as a kind of higher disability and cannot fathom how a fully able man or woman could decide to marry someone in my condition. In my case, I guess they must be thinking, ‘What was she thinking?’”
He is happy though that things are changing. The MTN advert that featured the blind singer/music producer, Cobhams Asuquo is a testimony. “That’s the best advert I’ve seen so far.”
Interestingly, 36-year-old Dada said he only became aware of his condition in 2010, at age 29. That, he said was because the awareness, even among medical personnel, and its management in Nigeria was and remain largely poor. Even his parents, including his mother, a hospital matron, never knew his true condition until then. And it took an auto accident that almost claimed his left leg, for the doctors at Igbobi to identify his situation as cerebral palsy.
Of course, he knew he was different, but he did not know what it was. His parents told him he had measles at age two – measles and jaundice are major triggers for CP – and that was it. “For two weeks, maybe months, I didn’t speak or walk; and when I finally started walking, my body coordination was no longer there. Even my speech had been affected, but to my parents, that was success. So I wasn’t born with the condition.”
Asked if his parents never tried to get a diagnosis of his condition, he said that is another story of Nigeria’s medical deficiency. “Could you believe that in Nigeria of today, neuro-developmental conditions such as cerebral palsy, Down syndrome and autism are not thought as major curriculum for nurses, midwives and doctors? So they graduate but they are strategically illiterate in these areas. Cerebral palsy is a childbirth condition, so our midwives should know because early detection and management can go a long way. If you see a child who had access to early detection and management, you will be the one that is arguing.”
Childhood
Quite surprising, Dada said he never experienced any taunting or derision from his mates in primary school. His opinion is that children are innocent and only interpret what adults and society pass to them. “If you are the discriminating father, you can be sure that is what your child will turn out to be. If a child is a bully, it is either the father is a bully to the wife or maid.”
So childhood with fellow children was communal, with lots of fun and games. Aside that he went to a primary school where his sister had a horde of friends who were like his Votrons and no-one dared mess with him. Unfortunately, he grew up experiencing real forms of discrimination from adults. “The most common” he said “is when I’m going on a street and I see parents pulling their children away from me. I just wonder. Maybe they think I have epilepsy.”
In school, Dada never wanted to be different and participated in virtually all activities. He recalled how he insisted on going to serve in the North-East for his Youth Service despite his doctor’s exemption letter; and how he even participated in the endurance trek, arming himself with glucose and stuff. That, partly, may be a consequence of his parental orientation and legacy. “Yes, I was different; but they never took me or treated me differently. They literally threw me into the world. Go, explore the world like every other child; be the best that you can be. If I failed, they scolded me like every other child.”
Significantly, Dada would appreciate a positive change of attitude and better orientation, to ensure better life for CP children. He cannot understand why the birth of a CP child should result into separation in marriages, although he noted that that, sadly, is the reality.
“CP is not a progressive condition but when there is no adequate management, it may degenerate. For instance there is no alternative to regular physiotherapy. I met a mother of a 16-year-old CP child who hasn’t gone for therapy in eight years. Of course the boy is all twisted and all he can do is lie down and smile.”
But he wouldn’t blame the parents since they are poor. “CP is one of the most expensive disability conditions to manage. Physiotherapists are not much, and they like to price themselves high. The cheapest at a government facility is between N5,000 and N6,000 and a patient may require up to three sessions in a month.”
Work and mobility
Last year, Dada made his first big sale as a real estate consultant. He sold six plots of land in Ibeju-Lekki, Lagos. His journey into entrepreneurship began after so many endless job searches. Many a times, he would get referrals through his father, who is a pastor, for jobs; he would send in his CV and do the written tests, but when it was time for the oral interview, the first question he gets would be: ‘Are you also for the interview?’ This was why he had to put that warning line in his complimentary card. He even went as far as Abuja in his job hunt, but was told jobs were prerogative of the senators. But thank God for technology and the online platform. He became a Jumia consultant, helping them sell goods and making commissions. He also has his own platform, Saints & Styles, where he sells stuff. Back in school at Babcock, he once sold suya and bread. He would order for both and retail to mates who needed them. Of course this was illegal, but he got a lot of fulfillment from it.
On how he moves around, Dada said he uses the walker indoors and a walking stick outdoor. Though he still has that drunken master walking style and goes down at the slightest touch, but he is not complaining.
Marriage
He met his wife, Oluwabukola on facebook. It all started with his New Year resolution in 2012, to have as many female friends as possible. Thankfully, he had learnt a vital lesson from his dad, which was to be available, be assessable and approachable. “I saw this natural beauty and I liked her page. Next, I wrote ‘Natural beauty’. And then I just thought, ‘Come on, he who is down fears no fall. So I started a chat, requested a date and we met. Lo and behold, it was as if two missing love birds finally found themselves out. On our first date at Good Time eatery in Ipaja, I didn’t have enough money for the drinks and we ended up swapping our drink for water and sharing it. But she didn’t mind. And when I finally met his parents, it was as if the son-in-law they had been waiting for finally came home. We got married August 26 last year, and as I speak, we are expecting a baby” he ended with a visible satisfaction on his face.
My strength is in my speech – Tobiloba Ajayi
Tobiloba Ajayi holds a degree in Law from the Igbinedion University, Okada, Edo State and a master’s degree in International Law from University of Herefordshire, United Kingdom. But that is as far as her interest in Law goes. The only time she ever practised was during Youth Service, and that, she said was because it was compulsory. Her passion, she disclosed, lies in advocacy; drawing attention to cerebral palsy, educating people and helping CP kids get an education.
As a result, she started the ‘Let CP Kids Learn’ project in 2017 to promote inclusive mainstream education for children with cerebral palsy in Nigeria. “It came because of agitation from mothers. They had read my story and wanted to know how my parents did it. And I told them that the game-changer for me was education. I told them, put your children in school, and they told me ‘But the schools won’t take them’; which I couldn’t understand. I went to regular schools: Ifako International School, Agege and African Church Model College, which was a public school at the time.
However, when I started investigating, I found that it was true. Private schools and public schools alike were rejecting CP children. The reason the public schools gave was that the government had established special schools, which in my opinion, were glorified daycare set-ups. They were not providing an education in my opinion, so I began to wonder: Cerebral palsy rate in Nigeria is one in every 90 births; what plans do we have for these children’s future if we’re denying them of the one thing that can impact their lives and change them positively?”
Prodded by friends who told her, ‘if you are that angry, fix it,’ she took off with the project. In the course of this, she encountered myriads of problems, top of which was in the attitude of some parents, who had in their psyche, written off their wards. “You hear parents say, ‘My child can’t, my child can’t…’ And when you asked what their child could do, they ended up taking long minutes before coming up with any answer.” But she trudged on, all the same.
In the first year of ‘Let CP Kids Learn’, Ajayi reached 56 parents and their children. She got 30 parents to put their children in schools. She also got private schools to take them in, since the public schools would not take them and the special schools didn’t meet their need. “I work with parents to fashion out educational options for their kids. Some children require one-on-one support in class, which means the parents must be willing to pay. Some require home teaching, and some required education and therapy. There is no blanket solution; I create solution based on what parents can afford.”
Ajayi’s passion stemmed from her experience. Like Dada, she said she hardly experienced ‘any malicious taunting’ from fellow children in primary and secondary school. But in the university, where students were supposed to be grown ups and more understanding, she experienced a handful.
She recalled how in her first year, she was walking down the road to get a bus and students were jumping out of their hostels to take a look. Initially, she didn’t know it was all about her until she heard a girl pass a comment in Yoruba. “Apparently, she didn’t know that I was Yoruba, and she said ‘If this one was born in my family, I would have killed her long ago.’ On another occasion, I missed my way to the Anatomy Department and a hostel mate saw me and tried to help me out. But what did I hear? One of the girls asked her, ‘When did you get yourself a liability?’”
She would get further attacks yes, that’s what she calls them – from adult visitors to her home. One of them asked her father, ‘Why are you wasting money, sending that one to school? What’s she going to become for you?’ On another occasion, another one asked, ‘Who’s going to marry this one?’ To which her father laughed in his face, telling him how he has had to literally chase men away from her.
But Ajayi said her response has been to view them all as ignorant and take it upon herself to educate them. According to her, “They were coming from a place of ignorance. They simply didn’t know better, and if you don’t know better, you cannot do better. In fact, at a point, I started feeling (psychologically) superior to them. I was the first significantly disabled student in the whole of Igbinedion University, but rarely would you find any students who was in that school in the five years I spent there, who didn’t come out with a changed perception and ideology about disability.”
This was because they saw how active she was on campus, in school and in fellowship. She took it upon herself to educate them: “All I needed do was interact with one student, and she would go about spreading the word about my capability and re-orientating several others. In no time, they became my voltrons and protectors in case anyone tried to be funny. The whole thing even transcended me, as many were taking the awareness beyond the school and going home to educate their relatives who had children with such conditions, even Down syndrome.”
In all, Ajayi has been involved in disability activism for ten years. In 2008, right after youth service, she was part of Nigeria’s Vision 2020 team that worked on the special interest group of persons with disability. An offshoot of that was the National Disability Bill, which they drafted, but which till date, is yet to be passed. Subsequently, she was part of the team that took a copy of that bill, adapted it for Lagos and got it passed into law in 2011. Within that time, 2008 to 2011, she also worked with MAARDEC (Mobility Aid and Appliances Research and Development Centre), ran by Cosmos Okoli. During that time, we planned the Miss Wheelchair pageant to challenge the traditional idea of beauty; we also organised the MAARDEC Novel Children’s Day Party, which was an all-inclusive children’s party meant to banish the phobia and biases that may be lurking in the children’s mind.”
She wrote and published her there books between 2012 and 2015. Between 2015 and 2017, she volunteered with Benola Cerebral Palsy Initiative, before venturing into her own, ‘Let CP Kids Learn’ project.
Cerebral palsy, a spectrum condition
Asked how she felt, when she discovered she was different, Ajayi said, she was just curious to know why she was different. But she considers herself lucky to have her kind of parents. “I was lucky to have parents who explained it to me in clear terms. They didn’t mystify it or try to shroud it in any way. Mum said, “You decided to come out of my tummy not fully developed… and when a child is born too early, he could have different issues, one of which may be damage to a part of the brain.”
Was she withdrawn, depressed, as a growing child?
“No,” she said. “I even became mouthier because I felt I needed to defend and talk my way out of trouble. Also, my parents were very good at celebrating strength; so on discovering that I was so good at talking and could literally talk for Africa, they simply built on my strength. I remember mum telling me that I was just talking up and down even at age one. Cerebral palsy is a spectrum disease and as such affects people in different ways, depending on the part of the brain affected. So unlike many CP children, I could talk fluently; it didn’t affect my vocal section.”
However, she is affected in other areas, such as eyesight her eyes are crossed; she also has issues with her gait, balance and trunk control. She also revealed that her left side is affected and weaker than her right.
About marriage
She said she simply isn’t ready now. Asked if the guys are not coming because of her condition, she said, ‘No, I’m actually the one pushing them away. Even now, marriage is not a goal for me. Maybe when the right guy shows up, I won’t be able to resist him,” She said with a confident smile.
