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.