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I was mocked, stigmatised for having a cerebral palsy child —Amina Bello, Kogi First lady

The wife of Kogi State Governor, Barrister Amina Oyize Bello, is the founder of Hayat Foundation, a Non Governmental Organisation, NGO, named after her first son, Hayatula Olarize Bello. 10-year-old Hayatula Olarize Bello was born a special child upon discovery that he has cerebral palsy
Since his birth, Mrs. Bello has gone through a lot of trials such as stigmatisation for having a cerebral palsy child, starting from the immediate home and even as outsiders gather to whisper when the young Hayatula walks around.
But rather than see this as an issue of discomfort, this astute woman displayed rare courage by turning her situation to advocacy and a voice for this set of special people.She kicked against situations where parents would lock children with cerebral palsy or other forms of deformities behind closed doors.
According to her, “I had to come back home and that was how the whole thing started. When by the grace of God we found ourselves in the position of authority, I felt I found my calling and I couldn’t help but project the image of these hidden faces, where you go into some homes you have been visiting them for years you never knew there was a special child or maybe a child with a spinal cord injury; not just children with cerebral palsy.
“Why don’t you take them to your church or your mosque as you go to every Sunday or Friday”,  they say the religious leaders are not ready to accept them; people will feel they are not performing enough miracles or people will start looking down upon them or start calling them names.”
Barrister (Mrs.) Bello spoke on the foundation and other burning issues with Chris Ochayi.

WHAT is the focus of Hayat Foundation?

I have a son named Hayatula Olarize Bello. I gave birth to him sometime in 2007 and  he has Cerebral Palsy.

Initially, we didn’t know, we were just living in denial.

We travelled from one country to the other, seeking solution and of course, we went through all those challenges and discovered that he had Cerebral Palsy.

But the major challenge was a society that was not accepting his kind. When we showed him too much love, people began to say that we must have used him for money rituals and when we don’t, it is like we are hiding him.

I grew up with empathy for people and I love my son regardless; and my husband had to really put his feet down and insisted he is my first son. In a lot of ways, that gave me lots of peace and comfort.

Eventually our journey took us to Kennedy Craig in the United States and Johns Hopkins respectively.

Amina and Hayat Bello

Existence of the hospital

There, not just the hospital but society was so loving and for the first time I realized there was nothing wrong with my son. We just found ourselves in a society that has not grown to that level.

We thought of relocating at first but I got inspired by the story of the Kennedys’ and the Craigs’ which led to the existence of the hospital and the school in the first place and I felt if we all keep leaving Nigeria who will be the change maker.

I had to come back home and that was how the whole thing started. When by the grace of God we found ourselves in the position of authority, I felt I found my calling and I couldn’t help but project the image of this hidden faces, where you go into some homes you have been visiting them for years you never knew there was a special child or maybe a child with a spinal cord injury; not just children with cerebral palsy.

There are different special cases. Even when you ask them, why are they not in the family portrait they will tell you: “I don’t want people to start talking”.

“Why don’t you take them to your church or your mosque as you go to every Sunday or Friday”,  they say the religious leaders are not ready to accept them; people will feel they are not performing enough miracles or people will start looking down upon them or start calling them names.

So we had to start this advocacy to try to re-orientate our people that it is not all cases that are via exorcism, some are just medically there— the same way we have black, white colourations; it’s the same way we have different children; and if parents are lucky to have healthy children all through, there are supposed to be a shoulder to lean on for parents that are not so fortunate.

Training centre for therapists

It doesn’t mean those parents that have special children have committed any wrong whatsoever.  God is just testing them and your attitude to it will determine how far you will go.

I have chosen to love my son. I want to be that face for parents that are ashamed of their ward and also for school owners that are quick to turn parents with special kids back for them to understand that they are just children.

There are able bodied men that just go about their normal businesses and for accidental reasons they have spinal cord injuries and they have to learn how to walk, how to talk, how to live life all over again. Public places should make wheel chair accessible and every school should have special teachers in each and every class for special children.

It’s not like I am not aware of severe cases that should be in institutions but mild cases should be in mainstream schools and every class all the way to the university should have a special teacher so that parents like me are not forced to segregate amongst our children.

We are also working towards opening an institute that will focuse on severe cases, we also intend to have a training centre for therapists; for behavioral therapists, occupational therapists, physiotherapists so that teachers that have NCE can come for an additional programme, whereby they are equipped with this basic knowledge and schools can reach out to us for these teachers to have in their schools and also of course to find possible solutions causes and prevention of cerebral palsy.

Is there any way there can be sponsorship of a Bill to make sure that the discrimination against these types of people take precedence?

What we are trying to do is like a replica of what we have in Kennedy Craig and Johns Hopkins. We want a situation where people can come from all over Africa to get quality education for your ward if they have special cases. We are going to have even boarding facilities for such children. To that extent we don’t intend to restrict it to Kogi State.

Even our religious and traditional leaders, we’ve been working with them to try and re-orientate them so they don’t feel like as an Imam your followers will look down upon you because you allowed special people come into the mosque to pray; or as a pastor your followers look less at you that you perform less miracles just because you have special people come in to the church. We are all God’s children.

Were there situations where people tried to use this to make mockery of you because we are in a society where things like that can’t be ruled out?

The mockery is crazy and it made lot of parents develop all forms of depression. I have been advised to inject my son for instance. Some say why not take him to the village?

For other people it is easier for them to live in denial but we were not brought up that way and today we celebrate him even his siblings are looking out for him, supporting him just because we made it so and my husband to a large extent really helped in this regard. He said  this is the will of Allah and we all learnt to embrace Hayat and today we are better for it as a people.

In America I was eager to go and whenever we go out either to shop or to stroll in the park I always come back home burning with tears of joy. I must have lost count of people who walked up to us saying ‘Hello, cute boy, how are you?.’ Some start singing nice songs to him; if we are in an elevator and there is a button to press, somebody will just oblige out of nowhere to press it and when we are to enter an elevator we are given first right at all times.

Singing ofnice songs

Some parents told me they wish they were Hayat’s birth  parents and when I asked why, they said government will make so many things easy for you because they know you have a lot to do. It’s really not an issue over there.

The schools we go to  are eager to prove to me they can look over Hayat, they can bring out the best in him-  in fact they pick on him more in a positive way but the reverse happens to be the case in Nigeria. Maybe the mild one will say sorry we don’t have facilities for him, some will just tell me straight on that parents will start withdrawing their kids if they should take him. As a parent those ones are even more painful than the day to day experience with my son.

Is it not possible to criminalize such actions?

Abroad, I interacted with some of my son’s doctors and that is how I got some inspiration and they said to me that once upon a time in America, it was like that, and if indeed you go through some of their old videos you will notice that there was stigma over there, but as a people they were consistent in voicing it out.

Like the story about the Kennedy Craig, what they told me was that the Kennedys had a child with a special need and the Craig was a scientist and had all the inventions over what and what to do because they were in a place of authority and had the means as well.

They were able to partner Craig in making Kennedy Craig what it is today and overtime, people started donating to that effect and now the school is massive, the hospital is massive, people now travel all over the world to that place.

If you look at some other West African countries like Ghana for instance, you will notice that they are just catching up with us in so many areas even in the entertainment industry and of recent the incident in Gambia, as a country we went through it sometime ago during the military era. I feel the same thing is happening in this area. Somebody has to advocate, that person needs to be consistent and gradually something is hitting your hard strong perception, gradually there is something in you when next you see a special child you begin to have a new orientation again and you will probably talk to somebody. I feel it’s a gradual process and we will get there someday God willing.

For parents out there who have similar children, what message of hope do you have for them, particularly on how to access the foundation?

They have to embrace whom they are and embrace their child regardless. There is something in that child; that child has come to this world for a purpose. They should stop wallowing in pain and self-pity. When people are pressing or stigmatizing them they shouldn’t hold it against them because they don’t know any better. If they can take out time to talk to them, fine, if not you shouldn’t  discriminate against them.

In reaching out to us of course, we have got our face book page, we have our various numbers, we have our website and they also see my stories. The name of the foundation is Hayat Foundation. The website is basically inspirational

We are working with some international bodies, which use wheelchairs, standing aid, walking aid for children, because when kids out grow certain wheel chairs, of course, it becomes useless to them, because they have to get a bigger one. They bring to us and in turn we give it out.

Once their child outgrows it they have to return it so that we can give to some other persons that equally need it. We also partner with some people that sell wheel chairs locally here. When you go round you will never see wheel chairs for children and it is still part of the denial.

We have been talking to them that there are children who need them, that is the reason  why some of them are usually on the floor because there are no wheel chairs for them.

We come up with programmes depending on what is peculiar at that point in time to just be a shoulder to lean on for each other.

Since you started this programme, how many of such cases have you been able to attract either through the websites, through outreaches and other forms of sensitization?

People do inbox messages to us, most parents are still scared, maybe because of stigma  to come out publicly. Usually, I don’t choose urban areas, I go to rural areas. For FCT, I normally chose the suburbs and that explains the few places we’ve visited.

Doctors and physiotherapists

Our target most times is to just bring smiles to those children and let the home that takes care of them, the care givers, know that there is someone out there looking out for them and since then we have engaged our doctors and physiotherapists, they have been visiting them on a weekly basis to teach the caregivers how to do various physiotherapy with those children because when we got there we discovered that some of them had not taken their bath for so many days.

Some had nothing on,  some of them were on the floor. Partly why it is like that is because most people that have or those in authority do not really want to go to that area. It can be emotionally draining.

In western world those are the people that come first. I had to care for them and of course I had to have to  my team visit them every week.

There was a particular time, we discovered that the drugs, the food, so many things we took to them were not being used including the mattress, so we had to call the head there to order: Some of these things, by the time they know that people are watching now for these children, they tend to sit up on their own.

If you are asked to draw a template for the government, what will be your recommendations to them?

There is no better template than my own personal experience. It will start with legislation because there is no law, a backing that will show that there will be a penalty.

When we talk about law people are quick to say it’s because she is a lawyer but unfortunately that is really how the society should work.

Special people

In other climes for instance, if you park in a parking lot meant for special people, you will be fined heavily and if for whatever reason you maltreat any special child, schools knew that they could be sued, just for discriminating against one special child. The first thing they do is to show you that this special child is more important to us and they will go into details, they will even show  their different therapists. They are quick to make reference to Kennedy Craig or John Hopkins, if maybe they have any cause or encounter any challenge. I discovered that legislation is the key fact and of course making every road wheelchair accessible, it’s just as simple as that.

Apart from seeing beggars in front of churches or mosques they are not really inside, you begin to wonder if they exist.

Most women have been sent out of their matrimonial homes just because they have special children; most people come up to say we have never seen this kind of thing in our family before, it must have been a witch and all sorts of names and before you know it she is out.

In essence will this legislation back it up that schools that discriminate against special children be shut down?

Of course. Before you set up a school, the school should be first of all be accessible, you must have special therapists in each and every class and of course have a body from the special people’s community that will come and certify that all these things are in place before the school can ceremony. Subsequently in the event that parents have challenges with either proprietress or the head of any school as a result of one stigma or the other there will be a law that such person can take the case  up.

What is the source of your funding?

We are depending on international organisations and of course some private organisations here, also some well-meaning Nigerians that are willing to and they have been helping in that regard.

Your husband is the governor of Kogi State, what advice would you have for the governor in terms of empowering the women folk in the state?

His Excellency Alhaji Yahaya Bello is very passionate about women’s needs and this is because he was for the most part  of his life raised by his mum as he lost his dad at a very tender age. Naturally, he has empathy for women. In most of his programmes, he ensures they are carried along.

As a country, we are going through challenging times and as a state we are also going through the same phase as a result of the reform going on particularly in the civil service and as you know Kogi state. So state for the most part, so it is really biting hard on a lot of us.

Various programmes

But I always advocate that we should be patient and of course be prayerful. I have also come up with various programmes in helping women like Poliatu in the different senatorial districts, there is this Igbira ei tu nu chenu popularly known by Yoruba sisters as aso oke. I have been helping in that regard, advocating and sensitizing our women to embrace it more, make it wearable and also produce quality materials.

I do them by wearing them for the most part showing them to people that it is doable. To that extent we are able to create employment opportunities for our women.

We also group women that we have helped with soft loans to start up their various businesses  and there are some other groups that we have helped with borehole because in dry season  they have to go far to fetch water and it’s not easy. Me in particular, growing up and going far to the stream to fetch water wasn’t easy, so I understood their challenges.  We have also assisted schools with writing materials.


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