Dealing with Misinformation About Cerebral Palsy
After her child was diagnosed with cerebral palsy eight years ago, lawyer and author Bukola Ayinde has been on a mission to educate people on cerebral palsy while nudging policymakers to make society more inclusive for people living with disability, Vanes
Eight years ago, Bukola Ayinde had her perfect life shattered. Her first child, Oluwalonimi, had been diagnosed with cerebral palsy. Her initial reaction was rejection. A devout Christian, accepting the reality of her child’s medical condition challenged her faith in God. She didn’t find solace in the thoughts of friends and colleagues either.
“Someone said that my husband and I must have committed a sin and that we need to sit down and think of what we have done, then ask for forgiveness. Another told us that we’re not desperate enough for a cure because we have money for her treatment,” she explained.
Ayinde felt alone in her world. When she visited malls and outdoor spaces for children, the young faces that stared back at her looked hale and hearty. The few who had disabilities didn’t suffer from cerebral palsy, a congenital disorder of movement, muscle tone, or posture usually caused by an abnormal brain development often before birth.
When she finally accepted her fate, she was challenged by society’s acceptance. Doors were closed at her in schools; people stared at her child as if she was an alien in churches. During these moments of rejection, Ayinde realised the volume of misinformation about cerebral palsy in Nigeria.
“My journey was like walking through a maze blindfolded, but then I started researching on the subject. I heard all sorts from people, so I realised that there was so much misinformation out there about children with disabilities, and I wanted people to see the child first before the disability.
“I have this beautiful girl with a lovely smile, whom I had discovered was intelligent, and I wanted the world to see that part of her as well, not just the part that she can’t walk, use her hands, and have poor neck control. There was a whole lot about her that other people didn’t know, and I wanted them to see that part.”
A trip to Hungary further enlightened her, and Ayinde began documenting her experience online. By doing that, Ayinde discovered mothers who were in similar situations. They would send messages and share their encounters with her. Their ordeals did not only give the lawyer and author a sense of belonging but inspired her to support mothers with special needs children.
According to her, when a parent receives her child’s diagnosis, the first person who needs therapy is the mother. Today, she runs a non-governmental organisation, Diary of a Special Needs Mum Initiative, that supports parents with vulnerable children.
The World Health Organisation (WHO) estimated that over one billion people live with some form of disability globally, and the percentage is higher in developing countries. In Nigeria, there are more than 100,00 cases of cerebral palsy.
More research revealed the growing misinformation about the medical condition as schools and churches turned their backs at persons with disabilities as if they were outcasts. Ayinde took the onus to change the narrative. To achieve this, she targeted the younger generation, because according to her, they are the best way to create the future.
“Today’s future is the children; those in elementary and secondary schools.”
For students in primary schools, Ayinde wrote three storybooks: ‘My Name is Nimi,’ ‘Peter is Different,’ and ‘My Sister is Special.’ The books told different stories about people with disabilities. The books triggered an interest in her child, and she longed to meet Nimi, as her daughter is fondly called.
She partnered British Council to organise an essay competition for secondary schools where they plumbed different ways to make a child with a disability comfortable in their school environment.
Inclusive education for special needs children is one way to help the social skills of vulnerable children. Ayinde discovered that this kind of education helped children with disabilities imitate their peers’ actions such as standing and walking. It also helped them to interact while teaching others to have respect and a sense of empathy.
“If we teach them now how to treat people with disabilities, then they will change the narrative because they understand that people with disabilities are human beings just like them and are entitled to their own fundamental human rights.”
The trip to Hungary was indeed an eye-opening experience to Ayinde. Over there, she saw the government’s conscious efforts to make society as inclusive as possible for people living with disabilities. There are well-equipped special facilities dedicated to children suffering from cerebral palsy and infrastructure are developed with people living with disability in mind. In Nigeria, such infrastructure is visibly missing.
This realisation fired up Ayinde. Since then, she has been advocating for an inclusive society for children with disabilities and nudging the government and policymakers to make infrastructure provision for people with disabilities in Nigeria.
Compared to other countries, Ayinde opined that Nigeria is not yet an inclusive society. She argued that even when building roads, the government does not consider people without cars, let alone vulnerable people. She advised that the government should make ramps available for people with disabilities in public places such as malls, car parks, restaurants, and schools. Making them inclusive in society, she said, gives them a sense of belonging. However, President Muhammadu Buhari signed into law the Discrimination Against Persons with Disabilities (Prohibition) Act, in 2019.
Access to healthcare is another area that the government needs to weigh in. She disclosed that most mothers who live in Lagos’ outskirts have to walk long distances, carrying their children on their backs to visit public health centres. This, she said, often results in backaches for the parents. She stated that there is an ongoing conversation with the Lagos government to deploy corps members serving the state and are good in physiotherapy to go to communities to help these mothers.
Today, Nimi is eight years old and a brilliant visual learner. Though she still has a speech impairment, she performs well in her class. Her mother described her as an easygoing child with a good sense of humour.
“And she loves cake a lot, particularly chocolate cake,” enthused Ayinde. She also enjoys watching cartoons and throws kisses a lot. She shares a special bond with her younger sister and is generally a darling to anyone who encounters her.
Like Nimi, Ayinde exudes a bubbly disposition that is a far cry from the woman she was eight years ago. Even now, the horrors of those harrowing days linger, but they no longer give her nightmares. Instead, they help her live a purpose-driven life and make her super confident to take on the world.