Being disabled Nigerian and a message from Maysoon Zayid

Living with any kind of disability is not the major challenge facing disabled citizens of Nigeria, it is dealing with constant reminders from people around that is most dehumanising.

We have our fair share of disabled Nigerians who are not on the road begging, these are the citizens whose disability are not only physical but also involves major neurological disorder. If they were lucky, they are home and usually the shame of the family, people used them as prayer focus/points and say something like “Please God, do not let me have a child like Emmanuel.” It doesn’t matter if Emmanuel could hear the prayers – he does not matter. The only reason Emmanuel lived to be twenty years old was because he was a very strong boy at heart and refused to give up on life.

Emmanuel developed a medical condition called Hydrocephalus  or “water on the brain” when he was about a year old. His family was devastated, they didn’t understand the condition so everyone around did what they knew best – speculate wrongly. I heard different stories about the cause of Emmanuel’s condition that I was confused. The one that stuck with me was the one that was blamed on the next door neighbour. It was said that Mama Eleja touched Emmanuel’s groin when little hence the condition developed – sounds really unbelievably ignorant but this is Nigeria where right information is very scarce. 

Emmanuel received all sorts of treatment from when he turned two all of which did not include what he needed most – medical attention to drain fluid accumulated in his head as this is preventing his brain from developing properly.

In 2003 – I got a name for Emmanuel’s medical condition while working at an institute that studies Cognitive Neuroscience and Psychology. The group did research all year-long, inviting people to participate on hundreds of studies – the work they do is really impressive. Then one day, one of the professors had a subject that bear striking physical semblance to Emmanuel – The subject went and gone. Then I went to Prof. Peter to ask questions about his subject. Peter was very generous in explaining the condition and I ended up reading all of his papers on the condition – You have to be really keen to survive reading academic papers on this subject.

With this new knowledge Emmanuel was taken to a Nigerian teaching hospital, doctors were very helpful, the water on his head was drained. However, his walking ability had been compromised before now, legs too thin to support the size of the head and growing body so needed support. He has learning difficulties and most of the problem that comes with hydrocephalus – he would have been a bit less affected if he was properly diagnosed when young. He was ten years old at the time of the surgery.

But yet I am glad we had a name for the condition so the family can find the best way to support their child.

In the last twenty years, Emmanuel’s mother and I have had major disagreements, all of which were about Emmanuel’s condition. She runs from post to pillar looking for ‘who was responsible.’ A pastor once told her the her son was Emere (a spirit child) and the poor boy was subjected to physical abuse with the hope that he would ‘confess.’ The said pastor who is seeing ‘visions from God’ dies 2 years ago due to untreated diabetes/high blood pressure – enough said.

Emmanuel’s mother is my sister, three years my senior.  Emmanuel was born during the time that I lived with her family so their challenges is close to my heart and had helped me to see Nigeria and the those guys in plastic white collars round their necks in different lights.

I wish everyone in Nigeria could watch Maysoon Zayid to learn how much we could lift one another’s spirit just by being a bit more kind towards those that have disability of all sort. I learnt from Emmanuel long ago that he did not need anyone’s pity – all he asks for is a bit more kindness.

 

 

 

 



Categories: Africa, Family, Mental illness, Nigeria

Tags: , , , , , , , , , , , ,

8 replies

  1. This was a truly great article, your personality, once again came to the fore.

    I do my best to respect everyone, regardless if they have a condition or not. The lesson I drew, is that blind faith in religion is no substitute for independent and rational thinking. You did research and hence you found out what the condition was and was able to take action. You even shared that this is a personal case for you.

    Insensitivity, is a terrible thing it can cause a lot of hurt, especially if someone is already facing serious challenges in their life. I will definitely be more mindful of my conduct both in public and private, thank you.

    Liked by 1 person

    • Thank you for the read. I think we are all very good people in general but the disconnections for the most part was borne our of ignorance – to a high degree sometimes.

      The belief that all that God created was good and for some reason being disabled isn’t part of that goodness is damaging. Being religious nation hasn’t help us in this regard, if anything it has made people a lot more slave to their religious masters who promise ‘on the spot’ miracles and the government who could help took the easy way out – pretend they didn’t see anything.

      The first time ever that I would see a disabled person treated like anyone should was on a bus in Seattle. I was gobsmacked seeing this lady coming up the ramp and driver beaming at her and then a few chit chat about her day – the lady went to pack her wheelchair and minded her own business, the driver didn’t make her feel worse about her condition instead put a little smile on her.

      So seeing people, normal everyday people like this, I always think about my nephew and just knew what happened to him was not from my ‘village witch’ – bad things happen sometimes but it is not our job to make already hard life harder.

      I used to think we don’t have disabled in Nigeria, then I realised those who have plenty of money emigrate to the west for proper care and those that are at home, remain common jokes, most of the time.

      Like

  2. I recall many, many years ago my cousin going to a different public school because she had polio. Also, Thankfully, our children are no longer separated because of a disabling condition. Yet, mainstreaming in the school has not addressed fully the needs of children with disabling conditions.

    Liked by 1 person

  3. Thank you Tish for stopping by and for the kind comment. Yes, I think Maysoon is just brilliant and nailed that talk.

    Like

  4. Folakemi, what a brilliant post – not only your personal story and its wise insights, but also the Maysoon Zayid TED talk. What a woman! Thank you.

    Liked by 1 person

Trackbacks

  1. Disability day: Lift a soul | Ori Yeye nii Mogun
  2. Hydrocephalus in Nigeria – Folakemi

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