As if staying alive to celebrate a child’s fifth birthday in Nigeria is not difficult enough, it is even worst living with a form of disability.
A 2016 report by the United Nations Children Fund, UNICEF, revealed that Nigeria contributes 10 percent to infant mortality in the world, a startling figure that sums up how hard it is to be a child in the Africa’s most populous country.
For Chinedu Ibesu, born with cerebral palsy- a medical condition that occurs as a result of non-progressive brain injury or malformation while the child’s brain is developing- life as a child could not be as tough as it has already been.
Ibesu now nine-years-old; cannot sit on his own, cannot walk or crawl, and his speech is barely audible.
When BDSUNDAY visited Chinedu Ibesu’S home in Ajegunle, Ajeromi Ifelodun Local Government Area of Lagos, the thin mattress laid on the floor for him in a room was filled with strong stench even as his wrapper was soaked in urine.
Four months earlier, Chinedu had lost his mother; the only one who would not give up on him. Today, he lives in silence, with no hope of being part of tomorrow, let alone a bright one.
Looking much younger than his age, Chinedu, whose body and head are covered in festering abscesses and sores, cuts a pathetic skeletal figure.
“We cannot really take care of him, we are all working, and nobody has the time to babysit him,” Kelechi Anozie, a family member attempted to make his point clear.
“Before his mother’s death, the father abandoned them, how do you expect us to take care of him?” he added.
Kelechi handed over a medical certificate, which indicates the numbers of sickness Chinedu is suffering from. “I feed him but he is not growing,”he struggled to explain when asked why he is looking so emaciated.
“There is not enough food at home. It is difficult. His father used to assist us but not anymore. I wonder how he feels that his child is like this,” he remarked ruefully.
Just like Chinedu, there are over 700,000 children living with this disability in Nigeria, while about 13.5 million persons are closely connected to a child or adult living with the condition in the country, however the disability has continued to be associated with spirituality, hence treatment and care, both from family and society has been hard to come by especially for those born into low income family.
The arguments from most Nigerians is that this ailment is associated with families eager to make wealth and it occurs when a member of such a family performs a religious act on the orders of a spiritualist to ward off spiritual attacks or be “blessed” with blood money, a myth that has continued to bring neglect.
According to a study released in late 2018 by the Bill & Melinda Gates Foundation, developmental disability diagnoses in children have soared nearly 80 percent since 1990 in Nigeria to 2.5 million. While India and China have far more developmental disability diagnoses than Nigeria — 11 million and 4 million respectively, cases in India went down slightly and in China they dropped by nearly half as at the time the report was released.
Mothers’ pain
When Shakirat Ademola, a 40-year-old mother of three, heard that her newborn son was disabled, her world started to crumble.
Ademola had given birth to Femi through Caesarean section in 2012, and upon finding out her baby had cerebral palsy immediately faced blame for her son’s condition.
“My husband shunned our son for being disabled, never tried to provide for him and even refused to be involved when I wanted to enquire how to take care of him; at a point, I had to quit my job as a school cleaner to sell in front where I live, as that was the only way I could properly take care of him.
“I was confused. I could not make sense of what was going on in my life and had no one to run to,” Ademola said. “My own mother asked me to only show up at her home with the two ‘normal’ children.”
“Till today he is still struggling to eat on his own; honestly sometimes I feel like giving up and dumping the baby somewhere, but my love for Femi is so strong that I still strongly have faith he can make his own destiny,” she said.
14-year-old boy, Steven Orode diagnosed with Cerebral palsy and acute malaria was not as lucky as Femi, as he was reported to be abandoned by his mother at Central Hospital, Warri.
Success Obere, the hospital’s public relations officer, said the teenager was admitted and the mother of the boy absconded shortly after the boy was diagnosed with the ailment at the hospital.
Obere said the woman had told the nurses on duty that she was going home to get somethings and detailed a friend who accompanied her to the hospital to look after the sick boy.
“After waiting patiently for the woman, the lady also left; we have called all the contacts the women gave, but she is not picking. We also called another line but the person denied knowing the woman or the boy,” Obere said.
Nonyelum Nweke, founder and CEO of Cerebral Palsy Centre (CpCentre) in Surulere, also noted that many parents see her foundation as a place to excuse themselves from the burden.
“There is a lot of myth around the ailment. I am also a parent and today my child is doing so well; in the centre you get some parents come to give us their children and hardly come again to check on them. To avoid this, we make sure every child’s details are well documented, and it has been a success,” she said.
The sting
Medics are warning that stigma makes it difficult to treat and manage the condition, thereby denying patients a fair shot at normal life.
The Nigerian government, over the years, has been striving to raise awareness level of disabilities in children; with the aim of sensitising the citizens on the causes and treatments.
Last year, Discrimination against Persons with Disabilities (Prohibition) Act was enacted, providing a legal framework to halt discrimination against people with disabilities — more or less the adult version of the Child Rights Act adopted in 2003. Still, Nweke believes that lack of political will to implement existing laws is the biggest setback for Nigeria’s disabled population.
Also, a Nigerian national cerebral palsy football team was put together in 2012 to represent the country in international competitions, but as of 2016, the team has yet to play any international match.
Kunle Afolani, a paediatrician, noted that the reason many children with cerebral palsy suffer is due to the myth that many Nigerians still hold on to. They belief those suffering from cerebral palsy are consequence of a crime or spiritual rituals committed by their parents. “This is a myth, more awareness needs to be done on the disease; there is the need for widespread education and information about the dangers of Cerebral Palsy,” Afolani said.
According to a research conducted by Professor Afolabi Lesi, dean of Clinical Sciences in the University of Lagos (UNILAG), cerebral palsy is mainly associated with prenatal events and low socio-economic status, which contradicts the myth that the ailment is exclusively suffered by the elite.
“Stigma arises mostly because our population is ignorant to available information. But there is also lack of education. Families and parents hide children with the condition because they don’t want the rest of the public to know of their existence, lest they be chided,” Lesi said.
But despite Nigerian medical practitioners’ efforts to educate the public on the true causes and effects of cerebral palsy, many Nigerians still believe that they are demonic-related, hence, the discrimination against those with the condition.
David Ibemere
