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Brave Women: “People told me not to show her to the world” | N’kiru Njoku on raising a special needs child and more

by Nk’iru Njoku

On the meaning of bravery

Bravery is to me, simply doing what you have to do, when you have to do it, regardless of how afraid you are.

On having a special needs child and how it has changed her life

 

Before having Didi, I thought I understood the meaning of life to an extent. I believed in the undulations of life and I simply lived for the day, carrying my crosses and basking in my victories.

When Didi came into my life, many things changed. I was plunged into a whole new vista I knew nothing about. ‘The world of the blind’ became my world, so to speak. I started reading a lot, watching videos about blind people and how they lived their lives. I found joy in realising how Diid’s blindness concretised some of my personal ideologies.

What for instance was ‘beauty’? How was it projected, viewed, and calibrated?

I knew Didi would never view ‘beauty’ in the way that sighted people did. I knew that beauty to her would have nothing to do with facial structure and society’s transitory definitions. I knew she would work with how she felt about people. She would listen and learn to read between lines, and fathom what has gone unsaid just from the little or much that has been said.

I knew Didi would not judge people based on any physical attributes and that whenever she liked a person, she would really like them. I felt as though her friends and lovers would always trust in her love for them, knowing that her affections would not be based on the superficial. I liked this a lot.

I was also badly shaken up. Frightened, in fact. I worried about how much trust she would need to have, and how humanity would definitely betray her trust once in a while. It made me feel very vulnerable on her behalf. However with that vulnerability came a deeper sense of empathy.

I started listening to people more, just because. And this led me to better respect everyone’s personal journey. Physical disability is not the only kind of challenge that exists. A lot of people have mental illnesses that incapacitate them in various ways and they don’t even always know it. It makes them treat life differently than the next person and if you are not able to empathise, you run the danger of sweeping through life hurting people even if you do not mean to.

I started paying more attention to my own mental state as well. I suffer an anxiety disorder and before Didi I had simply always popped my collar and put on my big girl pants. I seldom accepted help from people and I didn’t like to share my personal troubles because I feared being pitied.

Now, I lean on my friends and family when I need help with her. I have learned to trust people – something that was never a part of my mental make-up in the past.

I am not ashamed to ask for my support group to step up. I know that if I am not at a hundred per cent mentally, I cannot give her much. I cannot always be at a hundred per cent so I let my support group give me some of their strength, and together we navigate the way, with me and Didi’s dad leading the pack.

There’s so much one has to do. We talk to Didi all the time, we get her to feel her way around her physical spaces, we get her to mingle with as many family members and friends as possible, we try to create a social life for her. Her dad and I cannot do this without the help of friends and family. So we teach our people what to do. Sometimes they forget, sometimes they fail completely, but then we are all new to this journey and so we keep trying.

On pressure from Nigerians to not speak out about her child

 

Sometimes, people get tired of hearing or reading me talk about my child. It was always going to happen, and I understand if even if I am not moved by it.

These things are uncomfortable to hear. It is easier for people to listen when you say ‘we are looking for a miracle’, then they can empathise and oooh and aah and hustle for me to get the miracle from their own church. That’s easier for most people, than to see me actually say ‘my daughter IS blind, and she does this and that and bla bla’. They cannot accept it because it means they are somehow accepting ‘imperfection’ and ‘their God is a perfect God’.

This is of course crazy, so I don’t let it bother me.

I share my ‘Didi journey’ because not long after she was born I realized that many families hide their children who have special needs and this hurt me a lot. Some people even said the same to me. “Don’t show her to the world until she has a ‘miracle’, we don’t want people to know that she ‘can’t see’, so don’t tell them. She will soon start seeing, and then we can show her off”.

This killed me. My own child? Keep her away and refuse her the sunlight so that people wouldn’t tag me ‘the mother of a blind child’? I started paying closer attention to families with kids like Didi. I found that they were ashamed, sort of. They felt ‘less than’, they felt tainted. That’s a load of nonsense that I found very hard to wrap my head around.

You see, children didn’t ask to be born. We are the ones who had sex and we got them here. It is our responsibility as parents to see that they occupy their spaces in the universe, taking of and giving to the world as much their abilities will let them, and in fact propelling them to break boundaries where possible.

Scores of Nigerian families who have children with special needs have connected with me since I started talking about Didi. They draw from the lessons that her journey presents, we exchange ideas, and we foster a bond amongst ourselves because we understand one another’s situations to a very large extent. We basically speak the same language of sleep deprivation, confusion, teaching our kids to use what they have to get where they need to, and celebrating what other families might consider ‘insignificant’ progress. These are some of the elements that make up the language of special-needs parenting.

This is what drives me.

Also, I seek to normalise blindness in Nigeria. Our blind population may have the disadvantage of lack of sight, but they are not to be pitied and people need to stop spiritualizing their situation. It is insulting to the very essence of a human being for people to poke religion in their faces when they learn of the person’s blindness or any other ‘disability’.

A person is going about their business in the way they know how to and out of the blue someone tells them they need a miracle, they need a church, they need prayers. It demeans them. Blindness is my daughter’s ‘normal’, and I suffer no kind of nosey foolishness or rigid ignorance when it comes to this. When people come to invite me to their churches, I am stern in my refusal.

My daughter is not a problem and I’m not seeking to solve her. Taking her from place to place looking for a ‘solution’ to her having been born with no eyes will invalidate her and if she grows up having that experience, she will think she is a problem, and will be unable to boldly take her place in the world.

If something happens to me or her dad, we hope that we will have instilled this sense of normalcy enough into the lives of the people around us, so that in our absence or our inability to continue to do what we do for Didi, there will be people who know what we stand for and who will carry on from there. It is very important.

Apart from the social angle of things, I simply adore my daughter. I think that she brought some kind of light into my life and gave me a reason to become ambitious – a thing I never really quite was. She is like a ball of sunlight. When I have my many dark days, I only need to see her navigating the living room with or without her cane, or trying to drink from her cup without help and spilling the water all over her face, or simply sitting with me and flinging herself around my bed, clawing the room walls, and yakking away in her language, and my life feels brighter.

I love Didi as a separate human being from myself. One day I’ll no longer be here and she’ll hopefully be around just living her life and being herself, and doing everything she needs to do. And that tickles me a lot. I’m really awed to be a part of her journey. No matter how physically exhausting and mentally challenging it all is, it feels like witnessing/being involved in something truly special.

It’s like having a magic doll. The kind that moves. She’s my magic doll. Even if I wasn’t seeking to use her journey as some kind of change agency, I will carry my doll and play with my doll and talk about my doll. Until said doll becomes a self-conscious teenager and orders me to stop.

So, there you go – I’ll never stop going on about my child, no matter the pressure.

Do you think people owe it to themselves/society to be brave and speak out about things they care about or do you think silence is justifiable?

 

I think people need to speak up about things they care about. It’s not even about bravery all the time. You can speak with a shaky voice; you can speak and still be afraid. You can speak and still not fully believe that your voice will cause any kind of change. But when you speak, you lighten your burdens and you often find a clan of people who believe the same things that you do. What then happens is you find even more bravery to work with, and hopefully you can cause some kind of change as you go along. In the end, you are better of and so is your society, even if just a small portion of it. All positive change is valid.

Is silence justifiable? No it isn’t. But it is not always a dirty word. It is not always inexcusable or inexplicable.

Everyone has their own unique journey, their own threshold, and their own pace. Before ‘noise’, there is always silence. If silence weren’t a thing, there would be no need for speaking up. Sometimes silence is actually a place where one is getting prepared whether consciously or not. Until something hurts you enough, or lands on your table in a way that feels close to home, you may not even realise you have been ‘silent’ about it. Until you get angry enough about a social ill, you may not realise how silent you have been.

On whether bravery is innate or if it can be developed

 

With bravery, I doubt that there’s a black-and-white situation. On a personal note, there are areas of my life that I have had to drum up the bravery to tackle. There are also other areas of my life that I would attack with all the gung-ho I possess, no questions asked, no self-consciousness. So I think it largely depends on the circumstances and the mental infrastructure of the person in question.

On having, and finding a voice

My experience has been that every time push has come to shove, I have always had a voice. It takes me back to the issue of ‘silence’.

I recall when I used to have a .com blog-site that was in my full name. I already wrote for a living, so I was not looking to do anything heavy on the site.

I wrote a lot of fluff on there and used to frown at myself as I believed I was just wasting time online. I also felt very vulgar about having a site with ‘my full name.com’ on it. I think this might have been why I treated that space with an unconscious derision. Who was I to go around posting things on an ‘nkirunjoku.com’ space? What did I have to say that was so important?

So I abandoned it altogether, didn’t get the space renewed, and let it slip into oblivion.

Then I had Didi.

A former boss came to see me and he said to me, ‘remember how you used to say you didn’t think you had anything to really talk about, and how you’re not interested in regurgitating things that everyone else is going on about? Now you have something to talk about. ‘Adanne’, go out there and tell this story as it plays out. Use your voice to make a difference in the lives of people who need it, you have it’.

I was a little reluctant at first. I knew myself. When I latched on to a thing, I really did. But I also knew that I was not interested in saving anybody. I hadn’t yet figured out how to be a mother, let alone a mother to a child who was blind, so what did I have to say that would make any sense to anyone in my shoes?

Then in 2014 when Children’s Day rolled along, I was seated with Didi on the floor of our London home, doing some work and watching over her whilst waiting for her dad to return from work. I had already wished her well on the day, chanted her Oriki to her, and done all of that mushy mom stuff. But my heart kept going to Children’s Day celebrations in Nigeria and how we often made a big deal of things like that. I started thinking – if Didi were say ten years old and attending a mainstream school in Nigeria, would she be a part of her school’s Children’s Day celebrations?

I recalled how when I was in form one in an Anglican girls’ secondary school in Imo State, my sports and dance teachers prevented me from participating in their activities because I was bespectacled. For some reason, my usage of eyeglasses was some sort of pointer that I would be useless at those things. I still tell myself some days that this was a really stupid excuse that made no sense, as I find it hard to believe that there was not one bespectacled student in the dance or athletic groups. I’ll however go with their reasons, as I did on that morning when I was wondering about Didi and her participation in Children’s Day celebrations.

Every child is valid, I said to myself. No matter what disabilities or reduced abilities they have.

I and Papa-Didi as I fondly call her dad, had done our research. We had found blind-soccer, we had watched videos about totally blind surgeons, blind chefs with food blogs, blind painters, etc. We knew that our daughter could have a really robust experience of life. We also believed that parents in general could make things work for every child. In different ways, with different approaches, but it could be done. They could all be happy. They could all smell the sun and taste the wind. They all deserved to be celebrated and projected, and their humanities stamped firmly across the pages of society’s existence.

I then went on to put finger to keyboard. I wrote about the validity of children like Didi, in a society like Nigeria where they were largely viewed as ‘mistakes’, ‘burdens’, and ‘freaks’. I wrote about Didi and broke it down to my readers, putting enough detail to make people sufficiently uncomfortable so that the normalization narrative could begin.

So did I always have a voice? As an individual in her own corner of the world, no. However, when my corner of the world was shaken up by a reality that was common to a small slice of the population to which I now firmly belonged, I found that voice, and I am glad to know it is slowly making a difference.

On women struggling to find their own voices

Have respect for your hesitation. Do not despise your silence. Do not beat yourself up about your lack of confidence. But do not waste too much time agonizing and worrying about whether your voice will cause ripples or not. Do it for yourself first. Sometimes, the things you have to say are the things you need to hear. If you can hear it, maybe someone out there can hear it too, and even if they cannot or will not, there’s nothing wrong with singing to yourself in the shower.

You are valid, and your message is as good for you as it is for others.

Brave Women is YNaija.com’s citizenship series for the month of March. Find more stories in the series here.

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