In TQM’s style of celebration those who deserved to be celebrated within the community of persons with disability, we wish to celebrate PROF who is the Chairman of Star Children Initiative. PROF recently celebrated his 26th birthday and TQM is excited to identify with him based on impact Star Children Initiative which was established due to his disability have made over the years. PROF had disability as seizure occasioned by epilepsy therefore his mother Grace Alexander was interview on his behalf to share with us how the feeling of the whole family was now that PROF is celebrating 26 years old. We used the opportunity to dig and found out how PROF’s disability occurred, how Star Children Development Initiative started, the achievement so far and the way forward.

TQM: How is PROF?

He is fine, he is resting, he doesn’t go to school now because of COVID-19, and you know he is epileptic, so I cannot take that risk

TQM: PROF celebrated his 26th birthday, how is the feeling like?

I feel like the happiest mother on earth for the fact that he was able to make it this far. God has been great, the journey has been challenging. It really opened my eyes to understand that every human being is unique and wonderfully and carefully created. We are not the same, we are different. My son enables me to embrace the differences in human being.

TQM: How did PROF’s disability started?

He was not born with disability; he was okay until when he was five, he started having epilepsy. The Epilepsy was not having much effect, he was having small seizure and then he start having the big one and it started having serious impact in his development. He stopped speaking; he became unaware of what is going on around his environment which was really sad then.

As the mother, I was panicking, afraid and worried. We are from Nigeria, disability is seen as taboo, there is a lot stigma associated to disability and I have never experience that before with my other children and because he was not born with it, I was in denial. I have internalized those taboos, myth, stigma associated with disability, I was afraid to talk about it despite the fact that it affected my overall well-being. Instead of seeking help, I was keeping it to myself.

You know that years back, the awareness was not that much, so when you have a child with disability, there was culture of silence and again, there was brief that someone could be the cause of the problem. I had him in London, I was thinking, Could it be that someone sent something from Nigeria to charm my son, so I was totally confused on what to do. I started having confused emotion and at a time, I started having issues with my mental health. Internalizing disability issues was very difficult for me, I lost confidence, even though we are going to the hospital, I could not summon courage to go and ask questions about what is wrong with my son. I was having panic attack, I was asking God why me but no answers.

TQM: How did you get over these traumatic experiences?

It was a process, it took me 7 years, I went through bereavement because I thought I have lost a son, even though I was seeking help, I was still confused and living in denial. I was not actually doing enough to support my child.

Here, I was talking about my overall well-being and my son’s diagnosis which is global developmental delay caused epilepsy. In a problem, there must be light at the end of the day. After the 7years, acceptance came, I accepted the situation and what next, obviously in taking care of a child with disability, it affects your finances, you face a lot of social isolation and economic isolation, it is either you leave work or you find another work, or you are self-employed or you go back to school, all these things, you would be thinking how do I go about it.

One, I will instruct Parents who are going through what I am going, for you to affect any change, it must be intentional. Intentionality cannot if you don’t accept that there are problems. If you are still in denial, you cannot be intentional on what you want to do.

There was a kind of overhauling of my faith as a Christian, God made ways for me. On accepting the situation, I had started taking care of my well-being because I understood that if I do not take care of myself, I cannot take care of my son. It is important at the stage for one to find a support system, engaging social workers, physiotherapists etc. Look out for other parents who are going through what you are through, you can share information that can be useful for you.

I started speaking with professionals, seeking solution, looking for what works for my son and I had to leave work and went to School to study social work. Then, God started revealing a lot of things to me. I understood that I need to set up an organization after school but I need knowledge on what to do. As a social worker you do needs assessment and when I did my thesis, I worked with those that have stroke, developmental disability and taking care of my son gave me a lot of knowledge. So I took decision looking at what is best for my son and also medication, knowing what works for him and what does not work for him.

I saw a bigger picture which was to set up Star Children Development Initiative, it helped me to resolve everything in my mind, I was thinking about the solution not dwelling more on the problem. I understood my son diagnosis better. Parents should not live in denial about their children situation, don’t be too spiritual about it, speak out, and seek help.

TQM: We want to know more about Star Children Development Initiative, the objectives, achievement so far and what Star Children intend to achieve in future?

Raising my son gave birth to Star Children Initiative. When I started accepting, I saw a bigger picture which is to set up an organization that will support children, youth, women and persons with disabilities and also support their parents especially in Nigeria.

So I started Star Children Development Initiative in Nigeria, before starting the one in UK because that was the mission, a lot of things are still happening in Nigeria, we have not gotten there but there is a lot of awareness now but we still need to do a lot in terms of advocacy, development where people are so disadvantaged especially with this COVID-19. We started with children to age 19 and as my son is getting older. I started adding more age especially youths, so our focus now is youths and women.

We have done a lot in Nigeria, our first event in Nigeria is sensitization of persons with disabilities and our area of strength is advocacy so we started with seven local governments, we were interviewing over 100 of them and their parents and we gave them wheelchairs and foods as the pilot scheme and those parents are still with us doing well with their children. If any of them have problem, they come to our office, we organize meetings for them and try to assist them get over their challenges.

Star Children Development Initiative is not for profit International organization that promotes equality and social justice for persons with disabilities most especially children, their caregivers from poor socio-economic background, youths and women. Our thematic areas are welfare, health and education. Education, we believe every child has capacity, it depends on reasonable accommodation, for example, my child cannot speak but he understands Yoruba and English because I speak them to him. It depends on environment that the child is being raised, with reasonable adjustment, every child can thrive. We are also into inclusive growth; we organized entrepreneurship training for women and men.

Recently, we trained about 40 women and men from different clusters on digital marketing which was relatively new to them but it was done to improve their businesses. We assist with food items, we provide information, we assist in area of health services and education and every other ways to them feel like human beings. If we identify those that have wheelchairs, we provide them with wheelchairs. There was a time we collaborate with a Christian Organization here and container load of wheelchairs were given to us and they also follow us with about 10 professionals, technical people who can fix the wheelchairs, physiotherapists accessing them, we did it in Lagos in November, 2018.

As a trained social work, I train my team to carry out needs assessment; we carry out mentoring classes for youths especially those in school. Mental health associated with disability and poverty and they are intertwined, we are working to change mindsets. We have done a lot on sexual based violence where we did one in Lagos and one in Ede, Osun State where one brigadier sponsored us.

This year, we would be talking about inclusion, people do not have inclusion strategists in their offices, and they do not know how to go about it. People can contact us through our email or phone number for this, we will carry out a needs assessment first and we would work with the organization to understand disability inclusion and they can apply it. We will carry out a lot of advocacy especially on COVID-19 because COVID-19 in Nigeria has exposed a lot of social gaps and carriage of justice in the area of health, education, how disadvantaged PWDs are. Even leaders do strategized when it comes to disability that is why we would be looking into this year because people should view disability from the charity model, all they need is 5kg, some condiments and maybe little money, their problem is solved. If they are supported, their reliance on government would be minimal.

TQM: We are looking at full implementation of Nigeria Disability Act to resolve some of these issues?

Most offices in Nigeria lack disability inclusion strategists so they cannot implement the law effectively, they lack the capacity, knowledge and technicality required to effectively implement the law. How many of them know about the social model and the rights based approach, all they know about is medical model, seeing persons with disabilities like sick people. They do not realize that persons with disabilities are very creative and productive and they can leverage on their skills and talents.

For example, entrepreneurship trainings organized by government agencies such as SMEDAN, how many persons with disabilities have they trained? No statistics on that and even other government program, persons with disabilities were not included, I am of the opinion that if we want to address the issues of disability, it should start from our local communities, local government is the third tier of government and they should have care centres at the local government and they should have data on how many persons with disabilities in their locality. It should be a functioning office where one can get information of persons with disabilities in a click; this would aid seamless outreach to persons with disabilities because you can easily access their information from the centre.

TQM: How have your child PROF been coping with disability after 26 years of age?

PROF is the Chairman of Star Children Development Initiative; I am just managing the NGO for him. Coping with disability depends on environment; you know that a child is having an excellent self-esteem start from the home, the parents being able to support their children right.

My son is very strong, an excellent man; we brought him up to be himself, he is still having learning difficulties but cognitively he is doing well. He uses a lot of his sixth sense, he uses gesture to explain what he wants, we gave me actually when it comes to learning difficulties, I cannot say it is very complex, he can play you up. He is very intelligent, he know a lot that we don’t know, the only problem is difficulty in communicating how he feels but we do watch his body language. He has his own mind. It is unfortunate he cannot go the University, the epilepsy affected a lot of development in him, part of it is his cognition which is improving, but still I train him like his age mates minding his differences and limitations. I don’t treat him like a child, I tell him off when he doesn’t something wrong and I explain the reason.

At times he fought with me when I want to stop him from taking risky, he likes taking risk. There was a day he was doing press up on a chair, I was warned, don’t fall down ooo, which is good. One thing I do is that always ensure that there is no obstruction which he navigate around the house. He cannot move around for a long time and that is why he is using a wheelchair and he has a walking frame that he uses to stand.

Again, he doesn’t relate with children, he sees them as a fun people because I can see his eyes who are they, what are they doing, we can read a lot from his eyes, he has a lot of facial expression. He relates more with adults, he thinks that the adults will understand him. He uses facial expression to communicate and if you spend like half an hour with him, you will found out that he is very intelligent.

Raising a child with additional needs require patience and the ability to seek support.

I think if a child can answer his name or his nickname, the child have capacity to learn. A child can strive if given the necessary reasonable accommodation.

Rev. Victor Ezekiel (Rtd) is a person born with physical disability from Bassa local government of Plateau state. He is from a family of ten children. His father was a soldier, he left home for Biafra war when Victor and his twin sister were three months old and he never came back. His twin sister is a person without disability.
Victor is already married with four children.

In this interview with our correspondents Bulus Bala Izang and Joshua Yenle, he talked about his family, education, challenges as a clergy with Disability.

TQM. Is your wife a person with disability?

She is not a person with disability

TQM. Sir, can you tell us about Your education?

I started my education with Ecwa primary school Zagon, in Bassa local government of Plateau state, after my primary school, l went to Relevant Technology in Jos North, a Vocational Training School. From there l went to Ecwa Bible College kagoro, now a seminary, in kaduna state, from there to Jos Ecwa Theological Seminary, where l did my BA, and other several courses.

TQM. As a person with disability, what are your challenges like in school?

There are many challenges, the one that readily come to mind is the challenge of accessibility into and out of my class room in primary school. There was some numbers of staircases, which l could not climb up to enter my class or climb down out of the class. Each time, l am at the entrance of my class, l have to wait for someone to carry me up into the class or to carry me out of the class. That was how it was.

TQM. Who paid for your education?

My mother paid for my primary and Secondary education, not only me, but that of my other siblings as well. She was a tailor and from the proceeds, she educated us.
After that, while l was at the Bible college kagoro, now a seminary, in the first year, one of my lecturer, who is a white man paid for my first year, and the remaining years was paid for by a man that, l don’t know who he is in person. I don’t even know his name, l only know that he is a Muslim.

TQM. A Muslim paid for your Christian Theological Training?

Yes, the little l learned about him is, he was passing through Kagoro, and he saw me on crutches in the college, he stopped and asked question about me and when he was told, that l am a student in the college. He later went to the Administrative office. And the end result, he paid for my education in kagoro with the exception of the first year.
One of the reasons, He gave was that, he have a son who is also a physically disable person, walking with the aid of crutches, he try to send the son to school but the son refused.

TQM. Are you accepted and accommodated in your family and the society?

Coming from a christian family, the Christianity take away any form of discrimination, so l suffered no discrimination.
Also l cannot of any discrimination, To me what children do to people with disabilities, cannot be called discrimination, its sometimes lack of knowledge.

TQM. What was your work life like, as a clergy with disability?

After my education, l started working as a teacher in Bible school zabolo, now a Theological school, l was later transfered to Ecwa church Jabbu Bassa and Mi’ango, from there a white missionary requested that l work with him in the field, which lead us to worked in Niger Republic, Ghana, Benin Republic, Ivory coast and Togo. From there, l came back home worked at Ecwa church Laranto, where l retired.
In all my worked life as a clergy, l have not experience any discrimination or rejection, rather people accepted and supported me in various ways. I really thank God and people for that.

TQM. Apart from being a clergy, are you engaged in any other activity?

Even as a minister, l have learned a lot of skills, which l applied in the field. In the field we meet different kinds of people who are in need, putting these skills into practice, have really helped to solved some of these needs.
Sometimes, we even go to people to train them in one form of skill or the other and during or after such training, we get to win some of them to Christ.

I have more than eighty skills and l am still training people even in my retirement. In fact, l now have an NGO with the VIVIC Creative Foundation.

This year 2021. We are planning to train 150 people, 50 each from the three chiefdoms we have in Bassa local government, before going to other parts of Plateau state.

We would be doing skills acquisition in Bakery; Bread, cake, and other flour products, soap, detergents, shampoo, Vaseline, Bournvita, maggi, Dettol, etc.

By Gods grace, people would be trained in the skills of making these products.

TQM. In doing all these, have you enjoyed any support from the government?

No, we are yet to do that.

TQM. Lastly sir, what would be your appeal to the government and other members of the society?

My appeal to the government and individuals, they should come to our aid or partnering with us, so that we can train these people in skill acquisition and after the training, we should be able to give them start up packs, that is our wish.
These will go along way in reducing poverty in our community.

TQM. Thank you sir, we in TQM, wish you all the best.

Thank you.

Abigail Amali Ahinche is a single lady with physical disability from birth, she is from a family of six children, three males and three females. One of her male sibling was also a person with disability, his disability was also from birth but he is late now. Her mother and father are retired civil servants.

The beautiful Abagail did her primary school at SDA primary school Laranto, in Jos local government of Plateau state and thereafter she went to Girls High School Gindiri, in Mangu local government.
She acquired a Diploma in Computer Application, after which, she went to Jos Ecwa Theological Seminary (JETS), where she obtained degree and masters in Psychology and Biblical Counselling.

In this interview conducted by Bulus Bala Izang and Joshua Yenle, she talked about her challenges and discrimination faced in the society.

TQM. Are you working, if yes, where are you working?

I am working with local government educational authority here in Bassa.

TQM. Let’s talk about acceptability, are you accepted at home and the society?

I Would say, l am a privilege person, my acceptability started with parents, then my siblings, they did not only accepted me as a person and member of the family, but they also supported and still support me to live and have a good and pleasant life. They are just wonderful.

TQM. What about the community or society, is there any experience of rejection or discouragement?

People with disabilities normally face these things in life. I could remember, when l was in Secondary school, a serving member(a lady) of National youth service corps (NYSC), on seeing my disability, said that people without disabilities are struggling to get employment, not to talk of you (me) with disability. Why are you suffering yourself to school? Indicating my Schooling or education will be of no use or benefit to me.
A lot of people have said something in this line to me. But even with these, l still have the courage to continue with my education to the level l have attended today.

TQM. How do you manage rejection or discouragement like this?

To me, it is easier, because, l depend on God and love the Lord Jesus Christ. I know God have a purpose for me and that purpose shall come to pass in life. I don’t worry myself with negative things people think or say about me. For I know, l am fearfully and wonderfully made by God.

TQM.As a lady with disability, what would you say, is the common challenge that ladies with disabilities face?

I think ladies with Disabilities, face discouragement in becoming who or what they want to become in life.
I went to a theological Institution, and people asked me, if, l want to become a pastor, knowing that, the Church l worship with, don’t accept women as pastors. Some asked me, with all the education l have, what am l going to do with it?
Things like these, discourage ladies with disabilities from going after their dreams.

TQM. Outside your work with the local government, what other engagement are you into?

I own and run a provision shop, l also produce shampoos and liquid soap, which l sell for additional income.

TQM. Have you received any financial support from the government to boost your business?

I have not received such support yet.

TQM. Lastly, what would your personal appeal be to the government and other members of the society towards your business?

I would like financial assistance so that l can have a big store, where I can sell things at wholesale price, and to be producing my products in large scale.

TQM. Thank you for your time

Ans. You are welcome.

An interview conducted by Gboyega Alaka of The Nation

He is a man on wheelchair and she, a pretty lady without disability of moderate means. But theirs seems a marriage already perfected in the realm of the spiritual. In fact, the husband, Chukwudi Zico Aga, based in Amasiri, Afikpo North, in Ebonyi State, says it was made in heaven. How else would one describe a marriage in which the lady first sees herself getting married to a man with disability in her dream even before she met him in real life?

Their story gets more interesting, fairy if you like, when the lady, Nkiruka, wakes from sleep the very day after the night of the dream, goes out and beholds the man in a restaurant.

According to hubby, Chukwudi, 35, “I was having a drink with friends in a pub when this lady walked in, beheld me and burst into tears unprovoked. I was taken aback and asked her if she was crying at my predicament. I wanted to tell her that I’m not one to be pitied because aside the fact that I am on wheelchair, I don’t see myself that way and I try to live my life to the fullest, socialising and living my dreams as much as possible.

“But she said she wasn’t crying because of my condition. She said she was crying because she saw herself getting married to a man on a wheelchair in her dream just the day before, and that seeing me was only a confirmation that it was not just a dream but a clear message to her from God.”

Corroborating her husband’s story, Nkiruka, who proudly introduced herself as ‘Nkiruka Chukwudi Zico Aga’, said “I can tell you that our marriage is ordained in heaven because even before I met him, I already saw it in my dream that I got married to a man on a wheelchair. The funny thing is that it was exactly the day after the dream that I saw him.”

Explaining further, Nkiruka said, “When I saw him, immediately understood that he was the one I saw in my dream. That’s why I got emotional and cried. When I relayed the dream to him, he smiled. From there, we started seeing each other as friends and then eventually, he proposed to marry me, came to my parents, paid the bride price, and here we are as husband and wife.”

Asked if that was the only attraction, she asked, “Why? What else? I love him, period. I see a human being despite his obvious disability.”

How hubby became a person with disability.

Prodded on the origin of his disability, Chukwudi said he was not born with disability and that it was the outcome of a ghastly motor accident he experienced back in 2008.

“It happened in 2008, August 21st precisely. I was an upcoming young man, passionate about education and trying my level best to build myself up and make myself relevant to my community and family. I had a strong belief that education would put me in that position in life – still do. I got admission to study English and Literature at the University of Uyo, Akwa-Ibom State. In between, I was hustling, selling CDs to make money to finance my education. I was on a bike trying to reach some more customers, when a vehicle came from nowhere and ran into us. I immediately lost consciousness. I regained consciousness at the hospital two days after. Painfully, I found out my two legs were paralysed and I could not walk again. They said it had to do with my spinal cord, which was broken. The doctors placed me on a bed rest for years for the injury to heal. Later, I was taken to the National Orthopaedic Hospital, Enugu because my waist had become stiff from lying down for a long time without moving. There, a surgery was carried out on me before I was able to sit comfortably on a wheelchair. Before then, I couldn’t sit at all. I also regained the use of my hands but I could not use my legs.

“Frankly, I didn’t even know that I could survive or live to tell my story like this. I battled the illness from 2008 to 2011. It was a most trying time for me. I also lost my admission at University of Uyo.”

Uncowed

But Chukwudi says he remained undaunted. “I never lost hope. My passion for education was re-ignited and despite the fact that I was on wheelchair, I still summoned courage to process another JAMB examination for admission into a higher institution and in 2012, I got admitted into Akanu Ibiam  Federal Polytechnic, Unwana, Ebonyi State to study Office Technology and Management.

Asked how he coped with the running around associated with higher educational institutions in Nigeria, Chukwudi said, “It was not easy. A higher school is another society on its own, where you see your peers running around with their two legs to struggle for seats in the lecture rooms, and there you were struggling with a wheelchair to climb staircases to access lecture rooms/theatres. Painfully, there were no facilities for people with disabilities and your colleagues who were also struggling to get a seat in the lecture rooms, maybe on the second floor, didn’t give a damn about you… But I thank God for everything. In all, I succeeded in completing that programme and coming out with my National Diploma.”

In the area of socialisation and interaction, especially with the female-folk, a visibly excited Chukwudi said he had an interesting time at the polytechnic all through.

“I’m a very sociable person, so I had no problem blending and relating with my peers, whether male or female. I associated with them, I played with them; in fact it got to a point that some of the girls started looking at me in amazement. Some even told me to my face that, “You this guy, you’re not even bothered about your condition’. Absolutely there was no disparity or stigmatisation based on my condition.”

Literally, Chukwudi rose above his disability.

He also says he has refused to be caged by his condition. Even though he admitted to not having a defined job or means of livelihood at the moment, Chukwudi, who says he has survived on the goodwill and benevolence of friends and politicians, says he is committed to hard work.

“Part of my achievements is that I have authored and published three books. This has earned me popularity in my immediate and extended environment, as people keep marvelling at my ability in disability. They wonder at how someone in my condition could achieve so much, ‘The Challenges of Life and Their Solutions’ (2012), ‘The Power and Forces to Greatness’ (2014) and ‘Navigating the Lead Through Effective Leadership’ (2018) are the titles of my three books. However, it got to a point when I started thinking of a partner in the mode of a wife; somebody who’d be by my side and help me in achieving my dreams. I expressed this thought to my mum and she agreed, so we started praying about it.”

It wasn’t long after that he encountered her in a restaurant and the drama relayed above ensued.

After that first meeting, Chukwudi said Nkiruka kept coming around just to see him. “After a while, I summoned the courage to ask why she kept coming around and she told me she couldn’t help herself ad that she loved me.”

In summary, Chukwudi says, “I didn’t have to do much. In fact, I was the one that was giving her tough time. I even made life difficult for her by trying to scare her with the challenges ahead in marrying a disable person like me. And yet, she stood her ground. Then I told my mother about it; my father is late. We started the process; we paid the bride price and that was it. On the 23rd December, 2020, we solemnised the process, and as we speak, we are man and wife.”

They got married at the Redeemed Christian Church of God (Trinity parish), Amasiri, on Okigwe Road, Afikpo North LGA, Ebonyi State.

On whether they faced objections from families and friends, Chukwudi, who clearly is the more vocal of the couple, said, ‘not much’, except that from the church, where his pastors seemed to be more particular about the fact that Nkiruka was not a member of their church. But they quickly got over that.

As for her prospective in-laws, Chukwudi said, “They just called out their daughter and asked her in the presence of our entourage if indeed she was willing to accept my hand in marriage. She said ‘yes’. They said, ‘You are the one that poured yourself this water; if it burns or cools on your skin, you must not complain’; she said ‘Yes, OK’ and that was it.

On her part, Nkiruka simply said, “I told them and they gave me the go-ahead. They said if he was my choice, I should carry on.”

Some of her friends actually expressed their doubts about the relationship and asked why she was settling for a cripple, of all people, but having surmounting the hurdle of her family, the love-smitten Nkiruka said she simply told them not to worry, and that he is the person God has chosen for her.

On the possible financially challenges they may likely face, seeing that her husband at the moment has no defined means of livelihood, Nkiruka, who says she owns a shop where she sells wrappers (clothes) said “I know things will change. God will pave the way for him and provide for us.”

Real man

Asked to react to the widespread opinion that men with spinal cord injury are not able to function sexually, a rather shy Nkiruka, who admitted to enjoying every bit of their about a month old marriage, recoiled into her shell, saying, “Me I can’t answer that question o.”

Her husband, Chukwudi, however, came to her rescue.

Though equally embarrassed by the question, the man on wheelchair said, “I know that is what people normally say, but I have never been in doubt of my capability to perform optimally during sex. Besides, it’s not something you can go on to the streets and go naked to prove to everybody. But now that I’m married, my wife can testify to my functionality in the ‘other room.’ I’m especially thankful to God for that. As for child-bearing, it is God that gives children.”

On his prodding, a smiling Nkiruka also summoned courage to respond: “I know my man; he’s a real man. He can perform.”