Mrs Joyce Onafowokan, an Early Intervention Specialist certified by the state of Massachusetts, Department of Public Health is the Special Adviser to Governor Akinwunmi Ambode on Social Development. In this interview, the woman who spent most of her adult life in the United State of America spoke on her work with children with disability.
How did this work start?
Almost four years ago when Governor Akinwunmi Ambode was campaigning, he said that his administration was going to be one of inclusivity. It was part of his way of ensuring that despite our difference, we are all Lagosians, the rich, the poor, Igbo, Hausa, Yoruba, all the tribes and even those who have challenges of disabilities. That is all part of inclusiveness. I believe that he saw that much was not being done in the area of disability. Since I came, we have tried to address and cater to the need of families and children with one disability or the other. My background is more to the children who have disabilities. I am an Early Intervention Specialist certified by the State of Massachusetts, Department of Public Health. Early Intervention is based on the philosophy of “a stitch in time saves nine.” That is what I have done for the majority of my adult life. When this administration assumed office, I relocated to Nigeria to work with His Excellency, Governor Akinwunmi Ambode on disability matters.
Coming from America where there are fewer cases of disability, at what point did you realise the enormity of the job you had taken?
I think it was on my first trip to one of the homes. When I saw the kids that had cerebral palsy, I saw that their bones had restricted because once your bone restricts, there is a likelihood that it will not retain nutrient. The children had already lost all their muscles and looking at them, you would discover that everything within their body was already falling apart. I knew that they were all just being managed, and they were going to die. When I stepped out of that home, I cried. It was a visit, but I cried. I had never in my life seen kids who looked that way. In all the years of my working with people with disabilities, I had never seen kids who looked that way. For me, it was purely because nobody intervened on time and treated them early.
Having seen what was in the offing, how quick did you settle to work?
I have spent more than two years working on this project in Nigeria, and I am still acclimatising. I think those that I have worked closely with have begun to understand who I am. One thing that I will tell you is that I am passionate about my job. I am a person of integrity. Integrity and passion, those are my guiding principles. If you do not have a passion for the job you do, when you wake up every day and go to work, you will just do it for the sake of your paycheck at the end of the month. I do my job because I enjoy it. I see the joy in the eyes of the parents of the children I work with. I look at the parents and they are happy that they have a state which says I have got your back, I will hold your hands on this journey. I know what it is when you are given that news that something is wrong with your child. I am a mother and when you are pregnant for nine months, and you are waiting for the birth of your child, there is no way in your wildest imagination that you would think that you would not have a perfect baby. So when the baby comes and the baby is not perfect and you are being told you go into a state of denial that says they must be crazy, my baby is perfect. Then, you begin to focus on the strength and not the deficit. However, what early intervention is all about is to say let’s grieve, but let’s hold your hand, let’s begin to see those things that you are refusing to see, but we will hold your hands.
How far would you say you have gone since taking up this job?
I don’t think that I should be measuring my success. I think you need to go and talk to others. You need to go and talk to the service providers, the parents, they are there. However, I will say that I have worked to the best of my ability. Does it mean that we could have done more, we were set to do more, it is my hope that somebody takes it from where we stopped and it just doesn’t die because if it dies, it will be unfortunate.
How would you evaluate the efforts of the Nigerian government at eradicating disability?
You cannot eradicate disability because there are some that do not go away. What we need to be thinking as a government is how to manage it, how to ensure that the cases are reduced and they do not increase. To reduce the incidences, you have to think of nutrition, you have to think of environmental risk factors, cooking with charcoal will pollute the environment, see the cars on the streets, they are all polluting the environment. Pregnant women are in this environment and they breathe in the toxins. It depends on how much you breathe in, it depends on your trimester, if it affects the brain, men drink, and they have sex with their wives and they get pregnant, is that child going to have foetal alcohol syndrome, nobody talks about that in this country, but they are there, I see kids who have foetal alcohol syndrome. The features are there, so we need to be talking about environmental risk factors. Pregnant women, do they go regularly for check-ups, some don’t, their medications have to be given to them for free, the pre-natal medications must be given to them for free. I sincerely believe that these are the things we need to do not just as a state, but as a country because the incidences will continue to go up. A mother who is struggling to pay her rent, who is struggling to eat, she is pregnant and you are asking her to make a choice, do I pay my rents, do I eat or do I take my vitamins? What do you think she would do, the likelihood that she would go to a pharmacy, we also need to ensure that there are no fake drugs in our pharmacies, they are there, we are just pretending to ourselves.
What is your perception of law enforcement as it concerns fake drugs?
Nigeria has more laws than a lot of countries in the world. It is the execution of the laws that we fail at. The law says that there is free healthcare for all the children and people with disabilities. There is a special people’s law. The law says that the landlord cannot just throw them out of their home, there are places that they have to go, there is the Consumer Protection that was just started, there is an office I believe on Allen Avenue in Ikeja, Lagos, Nigeria. All these things are there, any child that has a disability is entitled to a name, to food, to clothing, to a shelter, to health, to education. The state is not begging, they have a God-given right to those things, and we also have to come back to the fact that it takes a village to raise a child. Hilary Clinton wrote a book, we knew about the concept before she wrote the book because I am a product of it takes a village. We need to be our brother’s keeper, you need to go to your neighbour and say, Mama Joyce, the child, have you gone to the doctor? What is the doctor saying, can I go with you if you don’t mind? Let’s do this so that the woman within the community knows that the community also has her back. That to me is what is lacking, one other thing for me is that I am really amazed that with the amount of wealth we have in this country, our millionaires, our billionaires, I ask them to put their money where their mouth is. We support things in this country, we spend so much unnecessary money on weddings, funerals, but we do not support Spelling Bee. Has anyone ever said let me pick up this course for disability? But if I, a Nollywood star, am celebrating my 50th birthday, everyone comes and picks a table for N10 million.
There are people who would say that your analysis is based on factors from where you are coming from and not the realities of Africa, what do you say to that?
When they tell me that, I ask them a simple question and nobody has been able to answer me. How is it in Nigeria, so when you tell me how it is in Nigeria, I can compare to where I am coming from and be able to say this is the difference. What is the difference, do you have different blood flowing in you, are you not a product of a swimmer that the whites are, did you not go to school as they went to school, we are following their system of government. We wear their clothes, we drive their cars, so how is it different? The only difference I know thank God they have their own fires, they have their earthquakes, they have all those things that God protected us from having because if we do, we will all die. They have summer, they have spring, they have winter, and those are the differences I see. Again, I will tell you that I see a society that takes care of its own, of its elderly, of its pregnant women. In the US, if you are pregnant, if you are poor, you are given assistance from the day you are pregnant, you are given assistance in terms of food that you can go and pick up at the groceries, food that meet all the classes, so that the baby does not come out with disability because they understand that they would rather spend twenty Naira in feeding you than a hundred Naira in taking care of the baby with disability till the baby dies. So, it is a stitch in time saves nine.
What does the level of education in Africa have to do with the amount of disability we have in this part of the world?
I think we are just a society that stigmatises, a society that is like the proverbial Ostrich that hides its head in the sand and pretends that the whole back side is also hidden not knowing that everybody sees it. We are educated, when I ask my children about something that I don’t know, they ask me to google it. So, you are educated, I am educated, and if I give you facts and you don’t believe it, just google it. The fact remains that we don’t have enough specialists in Nigeria. We need to work in these areas because disability is here to stay, and it’s not going anywhere. We need to get prepared, we need to put the workforce in place, we need to consider the environmental factors for our children, we need to consider our pregnant women, we need to train our doctors, we need to train birth attendants, how long can I labour? There is a limit to the length of time you can labour before the baby in you loses oxygen. I am not sure about the fact, but I think its five minutes, I want you to google it. You have five minutes of loss of oxygen to the brain before disability sets in during labour, but we are all afraid here. I hear people say praise God for me, I had my baby without being cut. What is wrong with being cut? I have three babies with two being caesarean section deliveries. They are successful, and I am here, there is nothing wrong with me. I will rather have a caesarean baby than have a child with a disability or the baby dies or both of us die just because there is something that says you can’t take the baby out.
How much support and cooperation have you been getting from the state government?
I sit here and I can say it categorically that my success is his success. He saw me; he gave me the opportunity to be of service. I am a public servant; I was brought in to serve the parents of those who have a disability. If he did not believe in me, he wouldn’t have given me the opportunity to serve and if I have not lived up to expectation, he would have asked me to vacate the seat because I know him, these are my thoughts. But again, I think these questions should be directed to him. I have gotten more than a hundred per cent support from him because he knows I don’t have a hidden agenda.
Is there a future for the African child with a disability?
There is a future and the future is in diagnosing them early because, with the early treatment, you can maximise their potentials. There is a boy I worked with, I met him when he was 15 months and he could not sit, he was not crawling and his vocabulary was barely two words ‘Mama and Papa’. That’s all he had, we started working with him and realised that his face lights up when he hears any music. We thought him language through music, he sang his needs. By the time he was going to pre-school at age three, we had already told the school that the only way that they could get to our little guy was through music. Today, he has a full scholarship to the Barkley School of Music. If he sits behind an instrument, he brings down the roof. Will he be able to feed himself, will his parent die happy, yes. That is the key to disability. It is early diagnosis and early treatment.
You hosted parents of children with disabilities to a party recently, what motivated it?
As I told you earlier, I am their servant. So, whatever seminars you see me do is based on their demands. They come to me and ask for something. I talk to my supervisor and ask for funding and justify what I am saying and execute. I had a seminar for the parents where I had someone from the Ministry of Education, quality control department in attendance, I had an attorney, and I had Dr Animashaun from Lagos State University Teaching Hospital (LASUTH), who came to explain the law, as it pertains education and health. There was also a parent perspective. We also gave them copies of the law. We said take it with you when you go to school, we highlighted the provisions, section this is for education, open it and show the principal. They say the taste of the pudding is in the eating. You go to the hospital show the doctor and tell him that the law says you should not pay, if they have a problem, they can call my office or if they still insist that they will still collect money, I will pay, but you better give me a receipt with your name, so I can say you are contravening the law because I understand what it is to parent a child with disabilities because I see them. We had a day of respite, we went to Elegushi Beach for a whole day without the children. We just didn’t just play at the beach, parents came out and spoke about their personal experience. I didn’t know that was the time for the Ileya holiday, but we had planned that at the end of it all they should go home with rice and vegetable oil. So that they can have food at home, but we paid for them to be there. 99 per cent of them had never been to the beach, but they enjoyed themselves.
Are we seeing more of it soon?
I wish that is something that can be continued and it becomes a recurring thing so that the parents for once can let go. Do you know what it means to just let go for a day? We had a DJ, they danced and at three I told them that the party was over, but they said that they were not going home. At the end of it all, they took some cooked food home because we didn’t want them to go and start cooking after having all that fun. We wanted them to just get home, take a shower and just go to bed. After what they had done for the day, you had to re-energise.
What you do is quite challenging, where do you find satisfaction?
When the faces of parents of children with disabilities light up when they say thank you, those things go a long way, they call me and say we are praying for you; that is all I want. At times, I ask God why he gave me this ministry, but he has not answered me.
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