‘Children with cerebral palsy should not be hidden, but loved’

Tell us about Hayat Foundation? The NGO is personal to me. I have a son, Hayatullah Yahaya Bello, who was born in 2007, and has cerebral palsy. Of course initially we didn’t know. We were living in denial; waiting for him to grow at the same pace with his peers. We travelled from country to […]

Tell us about Hayat Foundation?

The NGO is personal to me. I have a son, Hayatullah Yahaya Bello, who was born in 2007, and has cerebral palsy. Of course initially we didn’t know. We were living in denial; waiting for him to grow at the same pace with his peers. We travelled from country to country, seeking solution, that was when we discovered he has CP.

One of the major challenges is having a child with CP in a society not ready to easily accept a child with such a condition. When we show him too much love, people will say we used him for money ritual and when we don’t it’s like we’re hiding him.

I grew up with so much love and empathy for people in general. I love my son regardless and my husband had to fight and put his feet down, insisting that the boy is his first son.

Our journey took us to John Hopkins Hospital in the USA, and we discovered that the hospital and the society were so caring.

For the first time I realized that there was nothing wrong with my son; that we just happen to find ourselves in a society that is unaware of his condition. We thought of relocating, I also got inspired by the story of the Kennedy Krieger Institute.

It is an internationally recognized institution dedicated to improving the lives of individuals with disorders of the brain, spinal cord, and musculoskeletal system, which led to the existence of the hospital and the school in the first place.

So when I came back home, I started my NGO. And when my husband got into politics it was like I’ve found my calling and I couldn’t help but project the image of these children with cerebral palsy.

A lot of parents with such kids lock them behind closed doors. They should instead take them to their church or mosque where with time people could learn to accept them.

We had to start this advocacy and try to reorient our people. We have different kinds of children, some adjust medically. If we cannot have children that are okay all through then parents that have special children must have a shoulder to lean on.

Their attitude to it will determine how far they can go. Parents that are ashamed of their wards must understand that they are just children, just humans; it doesn’t mean that you should not care for them.

The government as well should make wheelchairs accessible in public places and special teachers for special students up to the university level. We are also working at establishing an institute which will look at severe cases. We also intend to have training centers for therapists so that teachers with NCE can come and be equipped with this basic knowledge of cerebral palsy.

Do you have any plan to sponsor a private bill to stop discrimination against such children?

Hayat Foundation is a pan-African organization. What we are trying to do is have something like what they have at the John Hopkins Institute.

What we want is for people to come from all over Africa and have similar services. You don’t have to go abroad and we don’t want to restrict it to Kogi State. We are working with our religious leaders to reorient them. All should be welcomed into the Houses of God.

As a parent have you experienced any discrimination yourself?

That is the stigma I was talking about; even when you come out people are whispering, it’s crazy, it makes a lot of parents depressed and some chose to live in denial. Some even asked me to take my child to the village, but we were not brought up like that.

Today his siblings look out for him. And of course my husband to a large extent helped in this regard, to stop the stigmatisation in the family.

But in America I was eager to go out, anytime I go out, I come back joyous because people walk up to you and say ‘hi’. If you want to enter the elevator you are given priority or people press buttons for you; some wished they were Hayat’s parent because their government does everything for you.

So the stigma is something else. I interacted with my son’s doctors and they said once upon a time in the US it used to be like that.

If you hear the story of Kennedy Krieger Institute you get inspired, in the case of Nigeria I feel somebody has to be consistent; it’s a gradual process, we’ll get there soon.

What advice do you have for parents with special children like yours?

First of all they have to embrace who they are and then embrace their children regardless, and know that there is something special about their child.

Every child comes into this world for a purpose; they should not wallow in self-pity, and should not hold out against people that stigmatised them because they don’t know any better.

Interested parents could log into our website, hayatfoundation or facebook page. The sites are basically inspirational. Like the wheelchair, we are working with other international bodies in the area of providing used wheel chairs for others to use.

And you hardly see wheelchairs for children, that is why you see some of them on the floor. We are working on that, to get even locally made ones for them. And our services are free, we are just there as a shoulder to cry or lean on.

How many special cases has your foundation been able to attract?

Most parents send messages, because of the stigma I talked about earlier. People are reluctant to come forward. We actually prefer to go to the suburbs, and we’ve engaged therapists to teach care givers how to operate. Can you imagine that some parents refuse to bath these children for days! It’s such a cruel situation.

Does your organisation have any template to ensure punishment in such cases?

There is no legislation or law that ensures people are punished. In other climes if you park in places for displaced person you’ll be fined heavily or even get arrested, and schools know that they could be closed down for discriminating against such children.

They are quick to assure you of their support. Legislation should make religious homes welcome special children and of course traditional rulers must do so especially at the rural areas. Some women are sent out of their matrimonial homes for having such children. So if we have legislation you will see people falling into line.

What is your source of finance?

Of course the recession is affecting everyone but we have assistance from donor agencies, international organisations and well to do individuals who are assisting in this regard.

What about empowering women in your state?

My husband, the governor, is very passionate about women because he was raised by his mum having lost his father at a very tender age.

He has empathy for women and for most of his programmes he ensures that women are carried along. Kogi State is a civil servants state and the reforms going on are biting hard. I call on women to support our leaders to carry out programmes that will assist women.

On my own part, I produce Aso Oke. I am sensitizing women to embrace it. To that extent we’ve been able to create employment for women and also provide soft loans for businesses at that level. We provide boreholes to assist in the provision of water. We understand some of these challenges and are assisting in this regard.