It’s unhappy folks suppose kids with cerebral palsy can’t be taught, have aspirations – Ajayi, disability rights advocate

Tobiloba Ajayi is the Chief Responsibility Officer of The Let Cerebral Palsy Kids Learn Foundation and a Mandela Washington Fellow. She speaks to ALEXANDER OKERE on how her organisation is helping children with cerebral palsy, among other issues

You started the Let CP Kids Learn project several years ago to promote inclusive mainstream education for children with cerebral palsy. How would you describe the experience so far?

It is now a foundation, actually, and this is our fifth calendar year; it’s going to be our fourth anniversary in about four days (March 25, 2021). Interesting is the word I like to use. No day is the same because no two children with cerebral palsy are the same. So, it’s an interesting journey. It can be exhausting on many levels but it’s a very interesting journey. One thing I can never be is bored; everyday, it’s a new challenge because you are meeting new families, interacting with new kids, and because we are all individuals, we have different experiences, socioeconomic backgrounds, and different needs. So, knowing that for each person we meet, we have to put all of those things into consideration in building their plans makes it an interesting experience every day.

What has been the perception of parents of kids with cerebral palsy regarding the objectives of the foundation?

We are all individuals; some people are different. I find out that some people come to us not knowing exactly what we do, despite the fact that I try to be very clear in all our communication about who we are and what we do. I have learnt to be able to summarise what we do in one or two sentences and if they want an explanation, I can go into details. Those who check our website before reaching out are already clear about what they need. So, when you are working with people like that, you are going straight to the point. They come to you because they know the services you offer fit their needs. But there are those who come asking whether we run a home or have a school for those children (with cerebral palsy). We do not run a school.

In 2018, you talked about extending the project to many states. In which of the states has it been introduced and how has the reception been?

Initially, we thought we would be able to do a proper franchising model, which is still in our end goal. But we have not been able to properly franchise. So, what we are doing is that we are serving people from our Lagos base across the country. We are expanding our reach of service providers. We are training schools across the country and then also making sure that we expand our reach for service providers from across the country as well. We have basically served families in at least 12 states. Oyo and Ogun (states) are very popular. Rivers State is catching up these days. Of course, the Federal Capital Territory is popular. We have got a few calls from places in Nasarawa, Sokoto, Kaduna, Kogi, Abia and Enugu in recent times. So, we generally try to serve people from our Lagos base; thanks to technology.

How do you fund your activities?

A lot of our funding is from individual contributions. We have people who support us monthly with various amounts. I remember that in the first couple of years, it was basically just family and friends. First, it was from my savings before it rose to family, and it’s been largely from family and friends since then. We have got a couple of in-kind corporate sponsorship as well.

Were there people who thought what you were doing was not necessary?

There are still people that think what I’m doing is not necessary. So, you can imagine what it was like when it started. I remember being told to my face that the foundation cannot work in Nigeria. But I’m a proof that this thing works because I went to school here (in Nigeria), so they cannot tell me that the thing cannot work. Apart from the challenge of funding, there is also the challenge of finding the right people to work with and it is also tied to funding because if you have to hire workers, you have to pay them. Also, we need to find people who don’t have a disability bias because if you have a disability bias, you can’t work with us. For the first couple of years, it felt like being a lone voice screaming into the abyss.

Do you mean there are people who think kids with cerebral palsy can’t learn and aspire?

Yes, and they tell me to my face. I remember being told that I was giving parents false hope and that I was also trying to destroy the lives of the children. It was that serious. If I believe in something, you don’t have to believe it with me. I’m going to let the result of what I believe in speak for itself. This is our fifth year and the results are speaking. We have put over 90 children in mainstream schools in Nigeria. These children are doing well; their parents are putting their testimonials online without me asking them to.

How did you feel when you were accused of giving parents false hope about their kids living with cerebral palsy?

It was upsetting to a certain degree, especially because this accusation came from people that were supposedly working in the disability space as well. So, to think that those you would expect to be allies are the people who are consistently trying to bring you down. It was really hard. But I, kind of, knew what I was setting myself up for. So, even when they attacked me, I allowed it to roll off my back like water. It just gave me the impetus to continue to provide excellent service to the people I was serving as of that time and to continue to refine as we serve. As I worked with each child in the first year, I was refining what worked. Of course, I made a couple of mistakes. I was learning from my mistakes as I went along. So, I just shifted focus from whatever anybody was saying to refining my processes so that I could serve better and so that the children could learn and aspire.

Would you say the Nigerian educational system has become more accommodating to persons with cerebral palsy and other forms of disability?

I would say we regressed and that we are coming back better. When I was growing up in Nigeria in the 80s and 90s, schools admitted everybody. Now, the thing was the schools would not change anything. A child with a disability could come in but no additional changes were made to help the child to learn. That was the mantra for most of the schools, though there were some schools, like the one I attended, that were willing to provide support so that one could excel because they believed that every child had the capacity to learn.

We went from a situation where all children were welcome to a situation where children were literally rejected at the door. When I came into the space in 2017, that was what was happening. Schools were telling parents, “We don’t take this kind of children”. That was what broke my heart because they are not giving them the access or a chance to even try. Children need to be given a chance to try, but they also need to be given the support that they need to excel.

You said you became aware that you had cerebral palsy at five but there are many children with this condition who don’t realise it until adulthood or teen years. Is this something that families should be worried about?

If a child doesn’t realise (that they have cerebral palsy early), it’s either their parents were ignorant or they kept them in the dark. Cerebral palsy is very obvious; it’s not a hidden disability. The child will have issues with muscle control, using their hands, walking, swallowing and talking. I have met adults with cerebral palsy who told me they didn’t know they had cerebral palsy until they were in their 20s and I was tempted to ask them what their parents told them was wrong with them because the condition cannot be hidden.

Well, my parents had a different approach. By the time I was five years old, my mum, who was a nurse at the time, had this biology textbook called ‘The Developing Human’. Now, my mum had a picture version of the book. It had a cut-out of gestational babies. My mum sat me down with this book. I like picture books and I was excited. I was born early; I was born at gestation period of 29 weeks, so my mum flipped to the 29 weeks page and showed me what I looked like as of that time. I could read at five, so I read all about all the things that were developed and not developed. She explained everything to me and it was simple enough for me to understand. At the age of seven, when people asked me what was wrong with me, I was able to give that explanation that my mummy gave to me. So, you couldn’t tell me that it (cerebral palsy) was caused by village people, even at seven years old.

Do you think there are families or people who still have a wrong perception or attach superstition to CP in Nigeria? What are the most prominent beliefs?

There are so many. Some say it’s the Devil that was responsible for the child’s condition and so there has to be a deliverance to cast and bind the demon holding the child hostage. A lot of the time, they (parents) attach those superstitious beliefs, but when I sit down with them and we try to break it down, we find that 80 per cent of the time, a lot of the cases were caused by preventable causes.

So, we find that there many cases of CP in Nigeria that were caused by mismanaged jaundice. A lot of children will have jaundice in the first week or two weeks of life; it’s about how it’s managed. It is advised that after you have had your baby, you should stay in the hospital for at least 72 hours for your baby to be monitored. But some Nigerian women go home on the same day because they think the reason they were told to stay was because the management of the hospital wanted to take their money. Meanwhile, the reason is that the doctor needs to check the bilirubin level of the baby’s blood from time to time to ensure that it doesn’t rise above the normal level. When the bilirubin level rises beyond the normal level, it could lead to brain damage. But by the time the child is brought back to the hospital, the damage is done.

Being part of the people that developed the Lagos State Disability law, how would you assess the level of implementation or compliance?

I can give them (state government) 25 per cent. At this point, you almost think it’s (the law) cosmetic. It’s sad. I remember when we were working on getting that law passed and the amount of excitement that followed the passing of that law, especially in Lagos. We thought we were on our way to achieving some real inclusiveness. But almost 10 years later, we are still here speaking English about implementation. Nigerians are a unique set of human beings; it takes serious political will to get laws implemented.

Where is the Nigerian society getting it wrong compared to the Western world?

There is discrimination everywhere. There is discrimination in the Western world as well; it’s just not as overt because there is a political will to punish offenders. I went to school in England and I’ve also done courses in the US and I can tell you that discrimination is everywhere but where there is the political will, you can’t discriminate against me. Even if in your mind you don’t want to accommodate me, you know that by not accommodating me, you would run afoul of the law. So, the political will forces you not to discriminate. That is the difference between us and the Western world.

Of course, there is also the place of culture and religion in Africa. Every good and perfect gift is from the Lord, so some believe anything that is not perfect cannot be from the Lord but from the Devil. And if something is from the Devil, we have to reject it and cast and bind it. There are so many cultural meanings ascribed to people who are different. I know a culture in which when children are born with CP, they are thrown into a forest because they are an abomination to their society.

Many may not easily recognise that you have cerebral palsy when they hear you speak. How does that make you feel?

It makes me sad for their ignorance because a single Google search will tell you that cerebral palsy is a spectrum condition that affects each person differently. And if you are trying to just judge me based on my ability to speak, then you just missed it because I have trouble walking and with my hand.

What do you tell people who apparently discriminate against you?

I don’t tell them anything; I show them their stupidity. I started doing that early in my life because I realised that people underestimate you when they think you are disabled. That is why I do excellent level work at every level in my life. I do not have one former colleague who would say Tobi did not do excellent level work. People have chosen to believe what they would but you can then help them to see, without saying anything because there is no need getting into an argument and asking why someone is discriminating against you.

The world marked International Women’s Day on March 8. What are your thoughts about the challenges women face and what the prospect is?

Anytime we talk about gender or women, I smile because gender issues are two times worse for women with disability. So, a lot of the time, gender stereotypes hold women back. It is said that if you are a Nigerian woman in the Western world, you have triple jeopardy: you are black, a woman and have a disability. I had a conversation about gender-based violence with women with disability a couple of weeks ago and we talked gender-based violence as an issue for women. But gender-based violence against women with disabilities is a double issue because the stakes are higher and the dynamics are different.

Women need to really ask themselves if they are ready for gender parity. We are quick to blame patriarchy for everything. But who are the major defenders of patriarchy? The major defenders of patriarchy are women. I know people may not agree with me. So, this generation of women needs to do better. We need to raise the next generation of women and men because you cannot achieve gender parity without the men.

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