Abel Nvedangaa is a dynamic person with albinism born and brought up in Taraba state. He attended his primary school and secondary schools in Taraba state. He dropped out in SSS1 due to financial constraints, while growing up, he later relocated to Jos and was able to complete his secondary school. He hailed from a family of 10 but unfortunately he lost four of his siblings in the cold hands of death and left with five of his siblings. Abel and his sister were born with albinism, sadly his sister with albinism died. He has been in Plateau and Plateau has become a home for him.
As part of TQM interaction with the key stakeholders within disability community in Plateau State, Kenneth Alabaraonye, our correspondent in a working visit to Jos, caught up with Abel who is the Chairman of The Albino Foundation (TAF) Plateau State Chapter. They discussed about his life and TAF programmes in Plateau State.
TQM: What is your educational background?
I started my primary education in Taraba state. After my sister was born, in my JSS2 my parents stopped paying for my education then I started talking responsibility of my welfare. And at my SSS1 first term, I couldn’t continue anymore because of the school fees so I dropped out of school. And after sometimes, I relocated to Jos to join my uncle, I stayed with him until II completed my secondary school in Jos. I wrote my external exams, I proceeded to a Pre ND at Plateau State Polytechnic and later went for Diploma and then HND. After my HND, I proceeded to National Youth Service in Maiduguri. While serving in Maiduguri, I applied to acquire a degree in the University and I started at 200 level. In my HND studied Accountancy but when I applied to get into the University and I got special education and rehabilitation. After that I went to Nigeria College of Accountancy. After that I become a member of other professional bodies like NIM that is Nigeria Institute of Management and Institute of professional managers and administrators. That is where I stopped.
TQM: Can you let us into your working experience?
I started my working early in life because I was working and taking responsibility for my education. I started working as an errand person on the street. I worked as a teacher, I taught music in primary and secondary school and that is JSS level and then I taught computer, ICT computer appreciation as well. From primary to secondary up to Diploma level in a private institution. Later I worked part time with the Benue state government, I was there temporary. I’ve been here in Jos working for The Albino Foundation and I have been here for a long time working as volunteer coordinators for 13 years before Oxfam Voice grant for a project and I am the project lead or state project coordinator in Plateau state. I am also the coordinator of The Albino Foundation program in Plateau state.
TQM: How have your works as coordinator on the Plateau been like?
A life of a coordinator has been very tough. I started it alone. Let me draw your attention back to my sister’s birth. When she was given birth, that was the cause of my father stopping my education and our family splits. My mother was divorced simply because my father felt she committed an adultery having me. He couldn’t comprehend it, he likening me to be a spirit. I was meant to be thrown away but it didn’t work out and later my mother ran away with me, insisting that I am a human being and so she refused to throw me away. She took me to a distance aunty and from there I stayed there for over a year before I returned to my father’s house with my mother when I was already walking. After that it became very tough and my sister later died of skin cancer and that was what encouraged me to go into this, so that I will tell other people about the issues of albinism. This was just a no fault of us that we are persons with albinism. And from there while in Jos, I began to go to door to door in 2007 identifying persons with albinism with the zeal of what I went through and encouragement from my mother. I continued until I came in contact with a TV program, that was when I met Jake Epelle when I had to travel to Lagos to meet him. Since then, I came back to Plateau and up the momentum, moved from local government to other. Today we have identified close to 400 persons with albinism here in Plateau state spread across the 17 local government of the state.
TQM: In creating awareness on Albinism, what is your success story?
We are achieved a lot because before if I am passing on the street, I face a lot of challenges but now the perception have shifted from total ignorance to awareness. Now people are getting to be aware and informed about persons with albinism. That is why we have been on the TV and radio. Just like we are talking to The Qualitative Magazine now, it is also all about the same awareness and we have been creating this awareness and we are still on it. We have been campaigning, building the confidence with persons with albinism to come out and recently we have discovered more and more. More are also coming out from their hidings and that has been an amazing result. Lives has been changed, about 2 or 3 marriages has been reconciled. They got back together and married and living happily. There are also other people who are coming out of their shell. Get the confidence to speak in public. Get the confidence to speak with other people. Many can hold their head up. Thanks to Innocent Ussah who was able to build my confidence right from the beginning, my mum and others has been very influential in making me confident and the work has generally been successful. We hope that in few years we should be able to build the confidence of persons with albinism in the whole state and the country at large. Albinism generally is not a curse but it is just a condition. So people should know that. And also my life in the department of special education in University of Jos, meeting people like doctor Yaqual really helped me. These are people who drew my attention to the condition and encouraged me to be who i am today.
TQM: On your awareness creation, have you been partnering with other people and organization? How do you source for resources?
At the beginning I was going from street to street with my little resources through my personal income but as time goes on, people come to our rescue. After some struggle, I came in contact with Mr. James Lalu now the Executive secretary of National disability commission. I also came in contact with the former speaker Joshua Madaki. I also came in contact with other people like the then honourable commissioner ministry of local government and chieftaincy affairs doctor Diabu Garba. Those are the people that from time to time I draw inspiration from and now finally, the commission, the disability right commission has also been very helpful. Then other people who helped to also publicized the work like the radios such as Peace FM they started it later, rhythm 93.7FM and a host of others. NTA Jos was very wonderful to us. Every time we have a program, they are always there and is always free. Likewise, The Qualitative magazine (TQM) and a host of others that i have mentioned earlier. The media generally has been helpful to me. They help us to bring out issues that concerns persons with albinism on the Plateau. And in raising money, this is the first time we are partnering with Oxfam Voice as an organization. Otherwise there has been none. Government is contributing a little. Although we really appreciate the support we got from them but we still hope that they we also come to our aid in this campaign. We thank Plateau State Governor for reaching out to PWDs through the disability right commission. We have office courtesy of the commission. Our office is located at the disability right commission Jos.
Abel Nvedanga at the middle during TAF Plateau State Programme recently
TQM: What would you say are the challenges of persons with Albinism?
The challenges of persons with albinism are enormous but we can streamline just a few. One of the first challenge is health challenges, skin cancer, not everyone has skin cancer but majority of us are vulnerable to cancer. We lack melanin so the skin seems to burn from exposure to ultraviolent light raised from the sun. The sun is the number one enemy of persons living with albinism and the light we see; it could be fluorescent or other ones that has ultraviolent light. Another challenge is our eyes, we use to find it difficult seeing, it could be long or short sightedness.
It is advisable that every person with albinism wear sunscreen and other protective clothes, hat or a face cap to protect yourself from the sun because once you have freckles your skin may like not be same again throughout your life and the freckles when they become severe the result is skin cancer, and things like blisters on your skin. We also have challenge of poverty. Persons with albinism just other persons with disabilities are poorest of the poor. We have also had challenge of education because of poverty and the abandonment from some parents and loved ones, persons with albinism don’t seem to go very far educationally. There are quite a few that acquired education to a higher level because they were lucky to come from privileged families. Or some of us which struggled so much, some people gave up. Statistically, I will tell you that in Plateau state you can count less than 10 graduate who has albinism. They might be more but I haven’t met them. At level of NCE, Diploma, we may have less than 15 people out of 300 persons with albinism. We have challenge of human rights violation, laws, policies of government such as National policy on Albinism are not being implemented. Unemployment is a challenge, even with your certificates, you are discriminated upon while seeking for job. From the entire local government of Plateau but the capital Jos, I can’t boost up 2 to 3 people with albinism that I know working under the government in Plateau state. I think for now even at the disability right commission none of us is working there. Unless government would try and accommodate us in the current employment. The interview has been conducted, we await letters to be released.
TQM: What is the relationship like between your cluster and the other PWDs clusters?
Before it was very difficult because we were living like bats. A bat is not a rat and is not a bird so that’s how we were considered. But with the enlightenment, when we go to people with disabilities, they will say we don’t have any disability. When we go to the community of people with disabilities, they will say you can’t see well, your skin is white, you are a disabled person. However according to the UN general assembly and the laws, we were identified under persons with albinism due to the fact that our skin lacks melanin and our eyes are not 100 % like the other people. What I mean is because people with albinism has 2 visual challenges, it could be long sight and it could be short sight. The short sight is regarded as myopia while the long sight is regarded as hypermetropia.
But it took a lot of time, a lot of fight, a lot of awareness before we were integrated. Especially at the commission, the commission played a vital role to explain these to other clusters.
TQM: Have you talked with the commission on the unemployment?
Yes, we have made moves and the commissioner has been generous. It is just that there was an embargo on employment when we met, so we cannot say the commission has been discriminating. That’s not what am saying. But am saying that it’s an issue of not really giving them my chance before but at this time we are trying to look at how things can be done and then the commission can also accommodate us within the various clusters. Because as at the case before, we have always been going in between, talking to them and now it seems they fully understand our plight and they are willing to accommodate us in everything. In the last 2 years or 3, the commission has been our rally point, so we have a very cordial relationship but sad enough the embargo on employment maybe has not been lifted. I think is just a matter of policy and now that the law is being amended, our issues has been accommodated. We are hopeful that once fully amended we will also be fully integrated into the other communities like the joint association of persons with disabilities which we are also a member but that wasn’t there before. Kindly enough Plateau state has been one of the leading forces and I was there to represent the persons with albinism.
TQM: What would be your call to people with Albinism who are not registered members of your association in teams of the again the stand gets by partnering with you?
The Albino Foundation has been one of the organizations that champions the issues of persons with albinism. I am urging all people with albinism that are yet to join us to come and now. We are creating awareness, breaking the barriers, building forces because it takes one month to start. Others have started and together we have been trying to do our best in Plateau state but now is the time to call on others too. Together we can build a stronger association. Even if you don’t have challenges, but you are person with albinism, please come, together we can tell our stories. There is nothing about us without us. No one else can champion the cause except us. No one understands us better us than ourselves.
How have you been creating awareness to your members on the issues of Covid-19 pandemic?
We have been creating the awareness of it among our members, I remembered that the commission sometimes ago brought people from NCDC and our samples were taken and awareness was created and our people were sensitized.
We are also part of the advocates that goes out to our members and the public to sensitize them that Covid-19 and because just like the case of cancer that we have lost over 10 persons with albinism in Plateau state, so we don’t want to lose any member to Covid-19.
TQM: What will be your parting words?
I want to tell the public that there is nothing wrong with a person with albinism but the society. Stop the discrimination especially parents and families, love your child with albinism, support the child for example I am where I am today because my mother supported and encouraged me and so whatever you say about me, it doesn’t bother me. She will tell me some children are flying on airplane but I too will do so, she used to refer me as her handsome son, beautiful and sweet words that made a difference in my life. So as a coordinator I am urging the public to love our people because we are not contagious, we are very okay, we are also good people, we don’t indulge in social vices.
TQM: It has been quite wonderful speaking with you sir. On behalf of The Qualitative magazine we really appreciate your time with us. Thank you.
This story is part of The Qualitative Magazine Project “CONNECTING OUR VOICES TO THE WORLD”-propagating the potentials and challenges of Persons with Disabilities in Plateau State supported by VOICE NIGERIA
