The parents did not plan to have more babies. But rather than abort the pregnancy, their strong faith in God made them keep it. When the baby came, T
The parents did not plan to have more babies. But rather than abort the pregnancy, their strong faith in God made them keep it. When the baby came, Tobi (Tobiloba) was an addition of joy to the family. Months after, they discovered Tobi had an issue which turned out to be Cerebral Palsy, a group of disorders that affect movement and muscle tone or posture, caused by damage that occurs to the immature brain as it develops, most often before birth. Ordinarily, any parent would be crestfallen. Much as that could be a major pain in the family, the father, an inimitable father both at home and in the Church of God, decided not to be cowed. He reached into his depth of confidence in God and decided to give the daughter a chance of her life to live just like any of her siblings. In other homes, Tobi would have either died of neglect, or be thrown somewhere or be a second time victim of her society that cares a little for the disable. Tobi was sent to school, in fact, as a boarding house student to start confronting life so early. 
After secondary school, she proceeded to Igbinedion University to study law, and topped it with a master’s degree also in law in England. By the time Tobi was through, God had ordered her footsteps to be a source of help and inspiration to parents who are hopelessly burdened with children with Cerebral Palsy. Today, Tobi, founder of The Let Cerebral Palsy Kids Learn Foundation is being used of God in hundreds of homes, giving hopes, touching lives and shaping destinies by conducting workshop for parents, teachers, educators, etc. Her story is marvelous! Not just because she rose to the occasion but because her father did not give up on her. One in two people with cerebral palsy has an intellectual disability. One in five people has a moderate to severe intellectual disability. Generally, the greater the level of a person’s physical impairment, the more likely it is that they will have an intellectual disability. Tobi is a wonder! You need to sit with her to see what the Lord is doing with this poetess and author of four books. Tobi wants every parents and indeed, every child with disability to know that if you are smart enough, people will forget your disability. Excerpts from an interview with her by Bola Adewara, editor E-life.
At what point in your life, did you realise that you have this challenge?
May be at about age five. That was when it became apparent to me that I was different from the other kids. I think it was when I wanted to climb something that I realise I couldn’t climb.
Tell me about your relationship with your siblings when you were all younger. Was there any kind of support or discrimination from them?
I think one of the reasons I didn’t realise I was different was that in my house I was not different. I was just the baby of the house that they bully as much as they could and sent on errands. That’s what you do to your younger siblings. Just one of my siblings was a bit different. She would insist that I do my part of the chores in the house despite the fact that I couldn’t walk. She would tell mummy to put a chair, that it’s my turn to wash plates. I mean… when you grow up like that, you honestly don’t see a difference. My siblings were very supportive, they were my first defenders. One thing that would never happen was somebody trying to bully me in the presence of my siblings. Though we fought and my dad would have to separate fight. I wasn’t treated differently. I think kids internalise how their parents behave. My parents would always say that I’m not different, that I just have something I do differently. ‘You’re still a child in this house and you have the same rights and privileges as every child in this house’. I think my siblings internalised that very quickly.
Getting to start school, your dad told me the story that you just stood up. Can you remember that day?
Maybe not that exact day, but I have memories of nursery school. Like I always say to parents, it is how you raised your child. People, till today, ask me who my father is. They are asking because I’m confident. So, they want to know who raised me. I’m raised in a house where people were ready to chance me and I had to prevent it. I went into the world with that same mindset of ‘I’m no different from you guys.’ I have the same rights, privileges, and obligations. And that’s how I came into the world.
I remember I could not sit at a time. My mum had to take throw pillows with me to school so that it could be used to support me. Children will be children. They know what you teach them. The kids understand she can’t walk. So, when its time to play, they would still come to me to say ‘let’s go and play.’ In a bid to follow them, I started attempting to get up. So they tried to help me up. While some were lifting my hands, others held my legs. Before I knew it, I actually figured out that I was on my feet, even if it was not perfect. I stood up and everybody was excited. We built on that and started moving myself around the school.
In school, was there any kind of discrimination?
Not really! I mean there would always be those who try to bully the person that is different, it is normal in the environment. There were the ones who tried to bully, and there were the ones who bullied the bully. That was the experience I had in school. But, it wasn’t so bad. I don’t think I understood stigmatisation until I went to university. The first day I got to the school, there was chaos. I basically sat in the car, then my dad figured out my accommodation, went to get my mattress. I was just chilling in the car and my dad was doing everything. Finally, my sisters were with my dad and they set up my room, laid my bed and did everything. My dad took me to eat. And when it was time to leave, I remember my sister started crying, telling my dad ‘And we’re going to leave her here. They don’t even have running water in this school.’ My dad asked her to get into the car or he would leave us both in the school. And it was interesting, I had great roommates. They were curious and were also very nice. I remember one of my roommates, named Ope. She offered to brush my hair and I said that will be nice. I remember someone cracked a joke in Yoruba, and then I laughed. And she was surprised to know that I understood Yoruba. My roommates spoilt me. They fetched my water, boiled my water, and cooked my foods. It was interesting, but some other people on the block had a problem with me.
On a Monday morning, when it was time to go for fresher’s orientation, I came out of the room and I was to walk to the hostel gate. So, on my way to the hostel gate, I saw girls, literally jumping out of their rooms in towels and nightee. They were staring at me. At first, I didn’t understand what they were staring at until I heard somebody make a comment in Yoruba, saying ‘if we had given birth to this kind of person in my family, she will be dead. What is she doing here?’ Then I realised I was the one they were all staring at. And in my mind, I just thought that I was already a celebrity. I just kept going. One time, I could remember I got lost. I was in a new school, I didn’t know anywhere. I remember I ended at the Anatomy laboratory. My roommates, second-year medical students were having practical at the laboratory at that time. So, one of them just look through the window and saw me looking confused. She came out and said, ‘what are you doing here?’ I told her was looking for New Hall. While she was trying to take me to there, some of her classmates came out and one of them said to her in Yoruba, referring to me that, ‘Ibo le tiri liability. Eje lo so fun school pe e fe. (Where did you find a liability? You better go and tell the school you don’t want)’. So, my roommate dragged me away from that conversation and said let me take you to the New hall. But, of course, I have heard it, but I moved on. For the first time in my life, I actually saw what it means to actually be stigmatised on the basis of disability. These people have not even had a conversation with me; they haven’t even got to know me at all. You have just assumed as to who I was and what I wasn’t.
The first time I should have spotted the stigma was when I went to write exams, but I think I just overlooked it. I went to write exams and the results came out and I passed and I went for the interview. In a room of four men, when I walked in, I saw the shock in all their faces. After the regular question, one of them said to me, ‘how do you think you’re going to survive in our school?’ He said, ‘your results are so good, I don’t have an excuse not to give you an admission letter. But, I will advice you not to come because our school is not made for people like you.’ I think that was the first time I should have realised I was going to experience stigma. But, I think I just didn’t see it. I’m used to looking for stigma, so I didn’t see it. I honestly don’t get angry. The only time I got upset was when people who should know (that stigma is wrong) choose to join in stigmatisation.
Tell me, you moved on easily. How did you come about having thick skin or not just bothered about it?
I think it’s how I was raised. Growing up, my dad would say to me that ‘there is nothing you cannot do’. And my mum’s favourite line was ‘if you would invest in your intellect, your disability would not matter’. I grew up in doing that. And I have always had very good friends over the years, and I have suddenly realised that if you are smart enough, people are going to forget about your disability. I just focused on that and I learnt to let a lot of things roll off my back. When things come out of ignorance, why should I be upset?
Was there any kind of support from the school authorities?
There was none. I was just a student. Disability did not exist in my school authorities’ vocabulary. I was told during the interview that the school was not built for people like me, I was the one who decided to enrol. Even in my faculty, a lecturer was talking to another lecturer that, ‘she heard that they admitted a student with a disability into the faculty. Who is the idiot that made that decision? How did they think the person is going to survive in the faculty?’ She was saying it and I was listening to the conversation. It was so interesting. In my mind, I just said, ‘this woman is going to watch me graduate. She doesn’t know anything yet.’
“… in my faculty, a lecturer was talking to another lecturer that she heard that a student with a disability was admitted into the faculty. Who is the idiot that made that decision? How did they think the person is going to survive in the faculty?’ She was saying it and I was listening to the conversation. It was so interesting. In my mind, I just said, ‘this woman is going to watch me graduate. She doesn’t know anything yet.’”
You have told me about your relationship with your classmates. What about the guys? How was it like?
Oh! That was fun. As I said, if you will invest in your personality and intellect, your disability probably would not matter. Trust me, I was one of those teenagers you have to police because the boys started breaking my father’s gate before I was 15. My father would shout ‘Ah! O je de odo, ko to pon omi (you had better reach the river before you fetch water. i.e. Become mature before you get involved in love affair). I was one of those teenagers you literally have to police in order not to get in trouble. I absolutely had no problem. The problem I had was that they were too many and how to ensure that you don’t get into trouble. My problem as far as my father was concerned was I’m too picky. Since I was 14, they would break down my father’s gate. My mum will just be shouting, ‘ah! This girl.’ So, basically, all the way from Secondary school to the university, I literally was not out of relationships. Once or twice, I did realise that my boyfriends were getting flak for dating me. I remember my Secondary school boyfriend; his mum totally forbade him from seeing me, saying, of all the girls in his class, he didn’t see anybody else. It is this one. It also happened with one of my other exes.
You had your master’s degree in England. Can you compare your experiences in Nigeria and England?
Oh! No. The difference is clear. Nobody cares for you in Nigeria, but in the UK, they chase you around with different supports, disability accommodation. The disability accommodation office always offered to help me. They chased with phone calls and emails. They literally forced me to take a tape recorder at some point. I told them I don’t need a tape recorder. I didn’t use one Nigeria University. What I missed about England is not even school. It’s an enabling environment to survive. When I was in England, I could go anywhere I wanted on my own. That’s not possible in Nigeria. There were 24 hours internet and 24 hours open library.
I would have thought that you will decide to remain there, rather than return to Nigeria. Why did you come back?
God told me before I left the shores of Nigeria that my work is here in Nigeria. When I got to the UK, I hit the ground running, because I knew I had very limited time there. I remember having a conversation with a friend of mine who told me that I would not come back when I got to the UK. I told him that I would be back in 2013 because I knew clearly that my work is in Nigeria.
What is the attraction to Nigeria?
God told me before I left so that I would not confuse myself. People didn’t understand why I was working so hard and fast. I knew I had very limited time. All of the things that I was there to achieve, I revamped a lot of stuff in my UK church. I knew these were the kinds of things God wanted me to do while I was there – to test structures and standards.
Tell me about your relationship with God
I have a daddy-daughter relationship with God. My friends even know I call the Holy Spirit my boyfriend. That’s the kind of relationship I have with God. It’s close, personal and intimate. We’ve gotten to a point where it’s not really about you anymore. Think about it, if you have a boyfriend, it stops being about you and what you want. You start thinking about the other person before you make a decision. For me, that’s what it is. I’m not going to take any decision without having a conference with the Holy Spirit. I would say, ‘Boyfriend, how far?’
Coming back to Nigeria, what led you into what you are doing now?
I started writing my books before leaving for the UK but it got published while there. These books were borne out of my relationship with the Holy Spirit and God. I still teach the adult class at Sunday Schools in one of the parishes of RCCG. My pastor would always ask why is my class so full and the other, so scanty. Somebody would then say, ‘it’s the teacher. Its Tobi’s teaching day.’
My first book came at a point where I was recovering from depression. I remember that I couldn’t even really write, so I was writing in verse. This is poetry. And the other books were more of prose.
Apart from writing, what were you doing?
People underestimate the gift of confusion. When I came back in 2013, my dad had ideas of how I was going to start visiting law firms. But as I was coming back to Nigeria from the UK, I knew that law was nowhere near what God wanted me to do. But what He wanted, I did not know. I knew it was not law. I always tell people, even if you know what you want, please know what you don’t want. I remember I was what I want to do and my answer was, ‘I don’t know.’ My family was very upset that I was waisting all the money invested in my education. I invested the time in writing. I wrote Inspiration was 2012. Who’s With Me in 2014 and published in 2015. One thing I didn’t do was to stay idle. I kept on teaching. I decided to teach foundation school. I thought Sunday School every week. I was the head of the teaching team. So, I didn’t stay idle. I volunteered a lot. If there was any immunisation around disability issues that needed volunteers, I was on it.
Tell me about your sojourn in America…
In 2015, I applied for the Young African Leaders Initiative. I got on that fellowship in November 2015. I finished that fellowship in December 2015. It took place in Ghana. In 2016, I got on the Mandela Washington Fellowship. It is a US government programme that takes Young African Leaders to the United States for six weeks of leadership training and an optional six weeks of professional development experience, like an internship. I got on the fellowship and the internship. I spent a total of one week in the US. The Mandela Washington Fellowship is keenly contested. In my year, they picked a thousand people across 54 countries. Nigeria only had a hundred slots. That was even the highest number of slots per country. In Nigeria, in my year, 10 thousand people applied and only 100 were picked and I was one of the hundred. While I was at the Mandela Washington Fellowship, part of the things that my academic institute would do was something called a fellow impact story. They would do a story on each person in the class. There 25 people in each class. They did a 3-4min video on the things that you’ve done in the six weeks and they would do an interview. So, they did that for everybody in my class. My video, after they finished the editing, they put it on YouTube and they tagged me on Facebook. The minute that my video got on Facebook, it went viral. In 24 hours, it had four thousand views. By 48 hours, we were pushing seven thousand. At that point, even American News stations were calling to know why the video was going viral. Part of the video, of course, mentioned that I have cerebral palsy and I’ve lived with cerebral palsy my whole life. A lot of parents were just coming into my social media inboxes to say, ‘did you school abroad?’ A parent was a bit more articulate. She said, ‘I’m sorry ma, to be a bit intrusive. I am only asking because I want my child to be educated like you but the schools won’t take my child.’ I said to her, ‘that’s not possible. Schools don’t reject children. She said, ‘Ma, I have proof. Do you want me to show you?’ And she showed me proof of five different schools that have said ‘No’ to her son. After her proof, more people started coming up with the same story.
Why is nobody fixing this? What’s our plan here? Before I went to the US, I was already working around cerebral palsy. I volunteered with an organisation that does a bit of advocacy around the issue. So, I knew that the statistics were clear. One in every 90 children born in this country is diagnosed with cerebral palsy. In a country where our annual birth rate is 5 million children, apart from the one we will lose to child mortality, that will be four million.
Tell me about your foundation, Let CP Kids Learn. What led to it?
For me, the goal was fixing this problem. I remember I would go to my office then, when I was an intern and my boss would call me and say, ‘What is wrong with you?’ Then I tell her what is happening in Nigeria. She would ask me what I want to do about it. What can I do? I am just one person. She would tell me, ‘This anger is valid and I don’t want you to waste it.’ She said to me, ‘Forget the numbers. Can you change the outcome for one of these children in your inbox?’ So, I said I would try with that woman that has had five rejections. So, I had a more detailed conversation with her. She sent me a video, she sent me pictures. I told her the nearest hospital to her house. I grew up in Nigeria, I know these hospitals and I use them. I said, ‘If you go here, you should be able to get support for your child.’
I told her to do a list of schools in the area that she would want her child to go to and call me when she gets there. So, I will have a conversation with them. Eventually, we were able to get her son into school and I was so excited. I have never been so excited. As I came back to Nigeria, I just kept doing more. Thankfully, it is always good to have parents who see ahead of you. I wasn’t thinking structure or anything. I was so excited to be able to help. I wasn’t charging them anything, I was doing it for free. My parents asked if I even had data for all the things I’m doing? I said, ‘No, I know the children’s names in my head.’ They insisted I write them down. So, I started writing. I remember that at the end of 2016, the Holy Spirit sat me down and said, ‘Now, here is where we’ve been coming. This is what you’re going to do and how you’re going to do it. And on so date, your foundation is going to launch.’ We launched the Let CP Kids Learn organisation in 2017. I actually saw where we’re going. We’ve been running for two and a half years. And we have reached 250 families. When I told my dad we’ve reached 250, he said at this point, ‘you need staff. You can’t do alone.’
How did this culminate into the global award?
We’ve put about 60 children in mainstream schools. We’ve trained over 400 teachers in 150 schools across the country. It’s been an interesting journey. About two weeks ago, we won the World Cerebral Palsy Day Award for education in 2019. For me, that’s powerful. This is something that they created applications worldwide and in different categories. And they came back to say that our contribution in education is actually the best they’ve seen this year. It was very satisfying.
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