I had the honour of talking to Bernice Oyeleke, whose work on education in Nigeria was recently celebrated by the Her Abilities Award. In a wide-ranging conversation we talk about education, identity and what Bernice sees as missing for children with disabilities in school.
If you're new… Welcome! I'm Peter Torres Fremlin and I make Disability Debrief so we can follow and understand international work on disability. See previous issues or search the archive, and subscribe to get them going forward. I love when people get in touch - reply on email, or find me on twitter @desibility.
Bernice Oyeleke is one of the women with disabilities whose life and work was celebrated by the Her Abilities Award 2020. She is a civil servant, writer and has founded her own NGO, Luminous, to support education of deaf people.
She has shared much of her own story in her autobiography of the same name, Luminous. It is a refreshing and evocative sharing of her story, growing up, becoming deaf, and a journey with difficulties, friendship, and discrimination. Access to education changed her own life, and she now writes and works for advocacy and initiatives particularly supporting education opportunities for deaf people.
Our conversation covers a lot of work and life. Bernice shares challenges children with disabilities face in Nigeria and her refreshing views on what can be done. We start with how the “surprise” of the award gives energy in a context that advocacy is challenging, and about how she understands education.
We discuss some of the prominent themes in her autobiography, the support received from friends and relations between faith and disability. From there we talk about deaf culture, what deaf people are missing out from the education experience, and how Bernice's initiatives respond to that.
It was a great pleasure to speak with Bernice. I'm happy to be able to share with you the work and ideas of someone with big aims for a better world.
Conversation with Bernice
We spoke on zoom. I typed my questions and Bernice spoke her replies. Here's our conversation edited for clarity.
“It is an encouragement for me to do more”
Peter: Congratulations on winning the Her Abilities Prize. What does it mean for you?
Bernice: It means so much to me that I won the Her Abilities Awards because it gives me a surprise. A lot of people are interested from various countries. And I'm very happy. And I think it is an encouragement for me to do more for society. Thank you.
Peter: You said it was like a catalyst?
Bernice: Yes. You know I'm a graduate in chemistry. We talk about catalysts: they're something we use to encourage a reaction to happen. In advocacy, there comes a lot of disappointment and also discouragement. So it normally wears someone down and discourages when I'm trying to do more.
But with something like this award… I'm encouraged to continue to generate more ideas and opportunities to contribute towards the development of society to promote inclusion, and enlightening society about the presence of disability and acceptance of it. And also towards provision of an accessible environment especially in the area of education for people and children with disabilities.
Peter: Advocacy can be very hard. Had you been discouraged?
Bernice: Yes. I am a writer. Initially I wanted to write articles to educate society but I realized that our people don't read, especially in my geographical area. People don't like to read complex stuff so I thought, "How can I get attention of people?" I was using social media. I thought of stories, general stories, authentic stories of people and then I thought of interviewing people with disabilities.
I didn't know that I would face some rejection. I thought many will buy the idea but in the process I faced some rejections. People misunderstood my intention or thought I want to use it even for self-glorification or things like that. And then some of our people in this Africa they have phobia so it was difficult to convince them. I got many rejections. I wanted to stop at the time. I actually stopped, but my partner, the founder of Inclusive Network, and other people ask me to continue the publications. So I encouraged myself and I push more people. Some rejected and some agreed. I was able to publish 40 profiles of people who are deaf here in Nigeria.
Also, in the area of electricity, here in Nigeria, and Africa, we have problem with electricity. I work from a laptop and then connecting over the internet needs electricity. So I had problem with it. I was cut off from electricity for months so that gave me a lot of challenges to access the internet. So, those were the challenges I have faced about interviewing people with disabilities.
Peter: Do you have any advice for me on doing interviews?
Bernice: To be passionate. Let your passion keep you going. That's it. Because where you'll face discouragement or rejection it's your passion that's going to keep you going at such moments. I wish you luck.
“For many years people with disability are kept away from school”
Peter: Your advocacy is to do with education, and education is a passion in your life. Tell me about the relations between education and disability.
Bernice: I became deaf while I was still in school as a teenager, so I know how disabilities can affect education. Disability can occur at childhood growing age, so many people who are disabled have the challenge of accessing quality education. So that's why I focus my advocating on this. In Nigeria and Africa, we still have parents that keep their children at home or are refusing to accept the disability. Especially deafness, they tend to deny it or are looking for solutions like going to spiritual places or some are seeking for something medical. They kept searching for something to take your disability away.
It's difficult for parents or other people to accept disability and for so many years people with disability are kept away from school. They don't access their right to education. A lot of places don't have the appropriate education system that they need. Some people are going to regular school and hiding their disability, which is not helpful. By the time parents eventually realize the child is with this condition it might be too late. That's why you may meet people that are older in primary school, basic school in Nigeria. There are many children with disability. It's not unusual to meet people 14 or 15 years old in primary school because of the denial that parents exhibited earlier.
We are trying to promote early child education for children with disabilities. It is still something new here. Some parents are still embarrassed to bring out their child with disability.
For example, my husband works in special education. He provides special care services. Even private arrangements. Right now he's currently teaching a 40-year-old man at home, who cannot write. His parents kept him at home so this gives some opportunity to speak out and alert society that disability is not a disease. Disability doesn't stop or should not stop a child from accessing the right education. We need a lot of advocacy. And for every parent of these children to connect or to access the right education that will benefit them in the long run.
“We need to reborn our mind before we can achieve anything good”
Peter: You wrote that "books sow greatness into the mind", that education can transform things. Can you say a bit more?
Bernice: Every barrier or disability starts from our minds. So we need to reborn our mind before we can achieve anything good. Bad things that weigh us down are not only for people with disability. Even people without disability also have their own challenges. So, when we attempt to analyze the mind, also reeducate our mind, somehow we will see opportunities.
For books, we pick based on what we need. For someone with disabilities like deafness like me, you know that deafness cuts people away from information. So books are very good. If a deaf person cultivates the habit of reading, it's not just for deaf person but everybody in society.
“We should ensure that friendship is not one-sided.”
Peter: Something that struck me reading your work was the importance of friendship, how friends had helped you access things in school, and work, and more.
Bernice: Friendship is to do with individuals. It is related to the individual and our personality. And for people with disability, even being able to open more network of friends we have to learn not to be aggressive or have a sense of entitlement. Everyone in friendship has to also make himself friendly towards the other person. We should ensure that friendship is not one-sided.
The person with disability should not just be receiving from that friendship. They should think of ways that you can contribute positively. So if a friendship is to be productive it has to be mutual, give and take, give and take. So every person with disability who wants to open a network of friendship so that you also have value what you drop into that friendship so you can make it work.
Some people feel a sense of entitlement, when our friend disappoints us a little, we are not able to remember that they are also human and they can hurt, we can also offend one another. If the friendship is productive the person with disability make sure that he is not taking advantage of the other person. And also, the person without disability should not take advantage of the person with disability. It has to be mutual respect and mutual value. That way you can have a solid friendship that will be productive in the long-run.
“We can't decide how such help will go.”
Peter: I was wondering about friendship and accessibility. I wonder if the school or environment can help people cooperate like this.
Bernice: Actually friendship gives you access. The thing about friendship is that it's not formal. You don't know what will come out of it. Everyone has their own behavior to get along in friendship. Society differs. The concept or mentality we have in society is different. Nigeria and abroad will be different. Here in Nigeria, to a greater extent, we have communion with one another and community. We have a greater sense of community to help one another outside disability. For example, when I'm growing up, there are neighbours. If anybody is absent, you can just drop your child with someone. This type of mentality that we have here. But in foreign countries it's not so.
If one can get help from friends it's okay, but it should be a responsibility of government to make policy better. Policy will settle all that: policy that's providing a friendly service to people with disability. If a person with disability cannot access help from friends, they will make use of that.
Going into the example of hospitals. When I was taking maternity care, when I was pregnant. I will meet different strangers. I don't know them. When the maternity lecture is going on. I asked the people around, please write for me. It may not be possible to get support sometimes. And it will not be accurate. So it's not every time that you will be able to get cooperation.
Then also, if we are using friendship, they may then take advantage of one later. You understand. They may expect you to be grateful to them, to worship them as gods. They may not ask value for that thing, because of disability. It's better the government take care of good policy for people with disability. That will settle it. If we go to the hospital as deaf woman with an interpreter... There will be no need to rely on informal help, that may not really be productive. We can't decide how such help will go. It may go positively and it may go negatively.
“Everyone will look for a way to get rid of it”
Peter: You wrote about your faith, and how it transformed your relationship with deafness. You had been praying to “get rid of the demon of deafness”, then after a profound experience you started to see deafness as part of your journey. What would you say to someone praying to change their deafness or other disability?
Bernice: I would like to start by saying this is Africa and we are spiritual people. I know what the issue of disability has been, for generations. We have always seen disability as a problem. You get it. So everyone will look for a way to remove, to get rid of it as a problem. That is the background of disability. We don't think of it from the beginning as something to be accepted, to be adjusted to, and continue life with it. We seek help or solutions to get rid of it, through whatever means we are believing. In special education, we call this solution hunting.
Looking for solutions, maybe from herbalist, to prayer houses, to Muslim houses, to hospitals. People get exploited in that process. But, acceptance is the key to solving the problem of disability and I've come to learn that. With disability, anyone can succeed, can achieve whatever he wants to achieve, and once the barrier is removed, disability is not a problem. It's just a unique identity. Just as some are white, some are black. That is it. A black person has to find a means to adapt to his environment. So, also a white person has to find the means to adapt with the environment. The same with disability, that's what makes us unique.
And if I will be talking about the spiritual side. There are people who are following the path of faith. I don't know if they do so in foreign countries, but in Nigeria, and Africa, we go to religious houses, prayer houses, even from one place to the other, looking for solutions. I will advise such people that even the God that we believe in is okay for people to live with disability and succeed. What God cares about is making our life count. We should be careful to avoid people taking advantage or exploiting us.
In my interview with people who are deaf, and people with other disabilities, many of us go through such situations. Some parents spend all their money looking for solutions. A lot of years have been wasted. The child is discouraged, disappointed. The child may be depressed without the parents knowing. Some people have been beaten, forced to eat concoctions. Some people suffer a lot more than I did. I did not go through that. My parents did not take me from one place to the other. We were just praying at home. But some went through a lot more than that.
It's better to accept the condition and get an accessible education, rather than a cure, that will allow the child to live an independent life. Thank you.
“I will sit the person down and educate them”
Peter: Sometimes disabled people can be very offended if we hear that someone is praying to fix us. Is there a good way to respond to that?
Bernice: After someone has accepted disability… After a change of identity, if someone invites me for prayer or asks me to come so that I can heal, I will not go. I will rather sit the person down and educate the person that my deafness is a unique identity and I can achieve as much as that person. So, that's one of the reasons why I wrote my story: so that people like pastors or leaders in religious fields, they can learn and see disability from another perspective, from another dimension.
For instance, if it is the Christian faith putting pressure on a person with disability to get healing, what can we do? We should look at how we can make the person relevant or allow the person to use his talents. That is the best way, not making the person feel different in a religious gathering. People with disability don't want that. And then, if our religious figures are educated, and enlightened, and know that God is not angry with people with disability, God is okay with it: then they will be able to enlighten or educate other people. For instance, parents that pray for their child, they will school the parent and teach the parent that take this child to school or get him medical assistance or rehabilitation for the child. That is all the child needs, not this.
“Being with other deaf people makes you feel free”
Peter: You said being deaf is a unique identity and in your book you write that the deaf world is a very interesting place. Can you say more about that?
Bernice: Yes. Deafness is unique identity. I was hearing for 13 years so I was not a kid, I was not so immature not to know what it feels like to the a hearing person. I have lived as a hearing person and I have lived as a deaf person and I know differences between the two. If someone is born deaf that person will not know what it feels like to be a hearing person. And a hearing person that has never been deaf doesn't know what it is like to be deaf. It's two different things. Before I was hearing with my ear but now I can hear with my eyes. And I was talking with speech but now I can talk with my fingers to those that understand.
When a deaf person meet another person who is deaf, such person feels a sense of belonging and they will kind of understand what you are going through. That's what it is like being in the deaf world. It doesn't mean that someone who is deaf cannot have a good relationship with others who are not deaf, like family members and friends. However, being with other deaf people makes you feel free. There's limitation to what we can perceive or how much one can relate with other people who are hearing, if they are not signing. But with deaf people you will feel a sense of belonging.
There are things that you can learn from others who are deaf like you. For example, before I married, when I was still single, I used to wonder how I will be able to take care of babies, to become a mother. I wondered what the experience will be like. After I graduated from school and I started working as at the Christian Mission for the Deaf, I saw several other women who are deaf and are raising families. So, from curiosity I asked them some questions, how do you hear your baby cry? How do you respond to your children when you are sleeping and stuff like that. So when a deaf person is with other deaf people you just feel a sense of belonging. You feel you have people who can help you to understand what you yourself are going through.
And with other conditions too. Maybe if you have difficulty at walking, some sense that you will not understand. Someone with a similar condition can understand, you can relate with very well and cordially. In the deaf community we just tend to accept one another as one. So that's what this is like among people who are deaf. Thank you.
Peter: In some places people call it deaf culture. Would you say that too?
Bernice: Yes, That is it: the deaf culture or deaf community. Those are the terms to describe it.
“The things that make education interesting.”
Peter: It would be great to understand more about your initiatives. What motivated you to start an NGO, and what are you trying to change in education.
All right. My organization is called Luminos Deaf Scholastic Initiative. It's actually very related to what I do. Education. Through my profession I'm able to see and observe many problems that are present in deaf children education. Let me give you an instance. I begun advocacy, not really so formally. That time we were posted to schools to get experience. My friend who is in intellectual disability unit was in a school for children with intellectual disability. A child was brought to that school. From what she was describing to me I told her that that child is deaf and this place is not fit for her.
I kept telling her to advise the parents to accept that she is deaf and enrol her in a deaf school. The parents find deafness difficult to accept, because they fear the disability. From experience of what I learnt in school, children who are deaf, find difficulty to accept. This disability is easier to deny, is is easier to pretend a child is not deaf than to deny or pretend that a child is blind. For a deaf child you can hide the child at home.
These are the problems that I see in deaf education. The objective of my organization is to enlighten the public,. While I was in school, there are no suppots. So that is what began my interest and advocacy. Another problem that I observed with deaf education is that when I got employed by the government here in Nigeria and I was posted to an inclusive school, I realized that little attention is given to deaf children's education and opportunity for dynamic learning like extracurricular activities. Going for competition. The things that make education interesting. They can promote motivation, they can promote school connectedness and make the child feel interested in school.
Education should be more than just sitting and learning. Other children went for competition, they had different opportunities, but deaf children were neglected. There is no quiz competition, extracurricular, debates, things that make education to be very interesting. So this was I thought about and put together as objectives that I wish to achieve with my organization.
So far we have held certain programmes, and we visited schools to give the opportunity to perform in quiz competitions or drama and also in literary competitions. Not only at primary or secondary school level but also at tertiary.
“Women are more prone to discrimination, even without a disability”
Peter: Are there different challenges to respond to for boys and girls with disabilities?
Bernice: Regarding that, I think every person with disability is first human being before the disability. The same for people who are not disabled, they have their uniqueness, and gender. For people who are disabled, there are some conditions that will be unique to each gender. Some organizations are coming up to tackle problems unique to gender, especially deaf and women. Regarding gender based violence, women are more prone to some discrimination, even without disability. Now let's think of it when there's disability. It's possible for a lady with disability to enter marriage or relationship and get bullied or face gender violence on account of disability and also being a woman.
I think from my research, men can be more assertive and speak out for their own needs, more than girls. For girls and women, to speak out, there will be more need to speak out, to advocate for their needs.
Peter: Is it important for you that the Her Abilities prize is for women?
Bernice: Let me think… An abilities prize for women with disability makes things to be more unique. Being a woman is also a minority and being disabled is also another minority. Now, bring the two together and then celebrating me in that regard is very unique.
“Without funding, dreams can die”
Peter: I really appreciate you sharing your unique story and many stories of persons with disabilities in Nigeria. Is there anything we didn't talk about that would be good to say?
Well, well, well. I don't know if this medium is appropriate, but I would like to say that Luminos Deaf Scholastic Initiative is a very new organization. We have very big aims for which we will need collaboration and assistance from well-meaning organizations, international organizations, who can collaborate with us to help us achieve the objective. For everything, every program that we want to do, we need funding. Without funding dreams can die, and we appreciate it if we can get international partners, organizations or an individual who would like to invest into our dreams and support us.
The last program we organized, a national literary competition, was well received by people who are deaf here in Nigeria. It was something that they have been looking out for. Some of them who won the competition and spoke with the media they mentioned how the programme is good. There are several dynamic, competition or learning opportunities which they wish they could have participated, especially quiz competition, but on account of their disability they are not able to do. They wish that the program will continue to be annual and not just Nigerian, but Africa, even in the world.
But to be able to achieve this, and even just to be able to make it consistent in Nigeria, we need funding. And I will like to make a call to international partners, individual, organization and philanthropists, to invest in our vision.
Peter: We need funding, otherwise we are doing everything in the "friendship" way we talked about. Thank you for your time and all the mobile data it used up!
Bernice: Don't worry about data, it's community service. I want to say thank you to you. I want to say thank you to you for finding me worthy of being interviewed and the sacrificing your platform. I also want to use the opportunity to appreciate Light For the World for awarding me and bringing my work into the limelight. And also, I appreciate everyone who sent me congratulation notes regarding the award. And all who are helping me, who are believing in my organization and have supported our programs. And my husband for his support. I say a big thank you.
And if you missed the last interview on this newsletter, catch-up with Antony Duttine who gives a refreshing presentation of inclusive health.
With many thanks to Bernice for her time and sharing so openly. Particular thanks to Dawn Rennie and Light for the World who suggested this interview and helped set it up.
And thanks to all of you readers for coming along for the journey, sharing it with others, and the feedback and suggestions you share with me.
I hope your dreams are funded,