SPECIAL REPORT: Despite laws, people living with Cerebral Palsy still face rejection, stigmatization in Nigeria

Each time Shola Owoyemi recalls the birth of her second son, Ayokunle, now a 17-year-old living with cerebral palsy, she sighs deeply in acceptance of what she says fate has chosen for her. Ayokunle’s birth has cost Owoyemi almost everything, including her job.

After giving birth to the first of her three child, Mrs Owoyemi did not conceive the second till 10 years after. She was living in Lokoja, Kogi State with her husband, who would later pass away while raising Ayokunle. To avoid public pressure about the long gap between her children, she decided to travel to Ilorin, Kwara State to deliver Ayokunle.

While delivering Ayokunle in 2007 at a hospital in Surulere, Kwara State, Mrs Owoyemi said her life cried for help as she endured the excruciating labour pains that she would never wish for any mother. When nurses finally delivered Ayokunle, he didn’t cry; the first common sign of life and survival of a newborn. This raised concerns until the matron on duty pronounced him dead, but after about an hour the newborn miraculously sneezed back to life.

“When the doctor arrived in the morning, he quickly observed his condition was not normal and arranged for our referral to a Maternity Hospital in Ilorin.

“One day, I just saw him suddenly had a seizure like convulsion wanted to happen, but throughout our stay at the hospitals they didn’t mention he has cerebral palsy or any kind of such,” she recalled.

Every month, the mother embarked on a five-hour journey from Lokoja to University of Ilorin Teaching Hospital (UITH) for a year-long immunisation for Ayokunle, and later physiotherapy after he was diagnosed with CP at four and was told he would be dependent throughout his lifetime. “That was how we started, I don’t even know the journey would be like this,” she said.

Cerebral Palsy (CP) is one of the leading lifelong congenital disorders developed in pregnancy or infancy due to a damage to the developing brain. The condition affects parts or almost all body coordination, including movement, posture and speech among other debilitating effects. While the condition is incurable, it can be managed, but how much it affects individuals differs from one person to another.

In Nigeria, due to ignorance about the condition, people living with cerebral palsy are stigmatised, rejected, and systematically discriminated against for opportunities that could give them a chance of a dignified life. These challenges plunge them, including parents, into psychological and emotional burdens. Often, their experience with stigma is more devastating than the condition itself.

People with cerebral palsy have the same or similar birth situation like Ayokunle. Often, many hospitals where their delivery takes place have limited knowledge of the condition and lack essential facilities, such as oxygen, to handle the situation promptly, resulting in frequent referrals to tertiary hospitals.

The struggle for acceptance

In Nigeria, it is estimated that 700,000 to one million children live with cerebral palsy. Although there is no available data on the total cases of the condition in the country, but a study approximated that 3.5 per 1000 newborns are affected with cerebral palsy. However, the lack of awareness and misconceptions about the condition contribute to the stigmatisation of people living with it.

Their experience range from societal stigma and diminished education, healthcare, poverty and isolation, to being abandoned or hidden away by families out of shame or superstition.

Having a child with CP is misconceived as a form of punishment or a curse, making stigma begin at birth, and extend into every facet of their life, from accessing education and healthcare to employment and social acceptance.

Like Mrs Owoyemi’s experience, families are also subjected to the same stigma, and sometimes compelled to take the life of their children. They struggle with these challenges despite the provision of the laws that ought to protect people with disabilities.

Ayokunle lives with a severe cerebral palsy condition and can’t walk or speak. Due to his condition, his mother’s friends started avoiding the family making Mrs Owoyemi give up on having friends or associating with people. She now lives in a bustling community in Kwara State, but her home sits at the edge of a secluded and quiet street to shield herself and her son from the public.

“Their reactions towards us forced me to stay away from everyone because I didn’t want them or anyone to discourage me from taking care of him,” she said.

The parents were later advised by their doctor at the UITH to enroll Ayokunle in a school, but the two schools they approached in Lokoja turned them away due to his condition.

Their next stop to enroll Ayokunle in school was the Stella Child Care Trust, a boarding education and care centre for children with disabilities in Bwari, Abuja, founded by the wife of a former Nigeria president, Olusegun Obasanjo.

The school according to Mrs Owoyemi first refused her son due to the severity of his condition. Despite the high cost of the school fees, the parents struggled to raise the amount to give Ayokunle the chance of education.

“They didn’t want to accept him at first because his condition is totally different from other children in that school. He can’t walk or do anything by himself. But I assured them he won’t give them problems because he will make gestures when he wants to do something like urinate.

“There was a particular day I went to visit him. I cried that day when I saw he had become so lean. They didn’t give him required care, they didn’t understand his feelings, they didn’t do any physiotherapy for him, the boy was famished. When we also see no improvement in him we decided to withdraw him,” Mrs Owoyemi recounted.

Due to continuous rejection and stigmatisation they experienced due to Ayokunle’s condition, and the risk in traveling from Lokoja to Ilorin for his therapy, Mrs Owoyemi and her husband decided she relocate to Ilorin.

“That was how I lost everything; my work and other things. I can’t opt to do any job because no one to stay with him. Since his dad has become late, I’ve been the only one struggling to take care of him, he can’t eat by himself, he can’t do anything by himself. It’s only me and him.” She told Ripples Nigeria.

In Ilorin, the parents didn’t give up on enrolling Ayokunle in school. They attempted to enroll him and his elder sister in Oluwatoyin Progressive Nursery and Primary in Olorunshogo, where both children were accepted.

However, the parents would later withdraw Ayokunle following persistent complaints by the school administrator that other parents were threatening to withdraw their children if they refuse to send Ayokunle away. “Though they refunded the school fees, but my heart was shattered and I concluded maybe no school would ever accept him,” she said.

Before his final withdrawal from the school, the lack of provision of facilities in the school to care for pupils with special needs like Ayokunle left him out of care, and with no improvement in his education, he often returned home with injuries from falling.

“He will fall, and they won’t be able to carry him. Many times he gets wounded. They will call me sometimes and I will rush there. If you ask him now to go to school, he’ll say no, that he will fall,”she added.

The journey of seeking education for Ayokunle ended at Oluwatoyin Progressive school as he is up till now not attending any school. He learnt the few English words he speaks from his younger sister who showers him with love and the hope that one day her brother would return to school.

Ayokunle’s rejection by schools is not new regarding the experience of children living with cerebral palsy. Many schools often claim a lack of facilities and specialised staff to care for children with special needs.

The Headmaster of Oluwatoyin Progressive Nursery and Primary School, Caleb Oluwatoyin in an interview with Ripples Nigeria blamed the rejection of children with disabilities on the lack of supporting facilities, and lack of awareness among other parents. He added that the complaints from other parents about children with disabilities often left them no choice.

“The major challenge we always have is from parents, they will start complaining that such child can’t stay in class with their children. We are always concern and speak to them about the discrimination but sometimes we don’t have a choice, because we don’t have special facilities like a special classroom for them, and normal teachers can’t care for them like a specialised teacher, and to get such teachers is costly,” he explained.

Like Ayokunle, Mary Ojo, now a 10-year-old living with cerebral palsy, didn’t cry nor suck breasts or take water at birth. At the hospital where she was delivered, the doctors were on strike and only nurses attended to her delivery.

Mary’s parents were not informed early at the hospital about the specific condition of their daughter. They became worried when children of her age started sitting, crawling, and trying to stand up which she couldn’t do at three-years old.

“We took her to Ilorin Specialist hospital, Olagbado, yet we were not told of her condition. They just told us that her things are slow and that we should always assist her. We tried but she couldn’t do anything herself until after I gave birth to her younger brother before she started walking slowly.”

Experts explain that early detection and diagnosis of cerebral palsy could help improve the condition. Many parents are often not informed by medical professionals about the condition of their children which explains why Ayokunle and Mary were diagnosed with CP late.

When Mary turned five it became apparent to her parents that she can only hear but could not speak, or do anything herself except with aid, and since she was due to go to school they enrolled her in Angelica Nursery and Primary School in Gaa-Akanbi, but would later withdraw her because of lack of improvement and care for her condition in the school. The second school they enrolled her into later advised them to withdraw her.

“After we withdrew her from the first school, and enrolled her into Royal Kids School, the proprietress summoned me one day that they can’t cope with her, and she advised that we withdraw her from their school,” the mother said.

Before Mary’s parents gave up on enrolling her into school, they also tried the Kwara State School for Special Needs which houses the visually impaired, the deaf and dumb, and some mentally challenged children. Although the school is not specifically for children with Mary’s condition, it would also take about two hours to transport her to and fro the school.

Whispers and sidelong glances have discouraged the mother to often take Mary with her in the public. “I’m always happy having her, but when I cry is when we go out and she drips saliva from her mouth, everyone starts looking at us, and some people would even talk.”

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In Nigeria, inclusive education is often out of reach. Most private schools reject children with disabilities, and public schools are not equipped to accommodate them and further limits their opportunities for social integration.

Children like Ayokunle and Mary make up about 95% of children with disabilities that are out-of-school in Nigeria due to rejections and lack of inclusiveness in schools. The staggering statistics includes those with cerebral palsy, who are often turned away by schools.

For Aminat Lukman, a four-year-old girl living with CP, the rejection started with her father who accused her mother, Oluwatoyin of bearing him a “cursed” child, and later abandoned the mother when Lukman turned two. Left without support, the mother has been struggling to provide care for her child.

Before the mother was divorced, she endured her husband’s family’s pressure, who often blamed her for the child’s condition. She had always wanted to try to explain the child’s condition as ‘God’s will’ and seek support to care for her, but often felt powerless in the face of prejudice.

“They (husband’s family) started telling me I should go and give birth to another child, and also seek spiritual intervention. People also gossip that the child is a punishment for my sins, and say many other things,” she said in tears.

Oluwatoyin was also influenced by misconceptions by religious healers, who told her that her daughter’s condition is spiritual, and offered promises of a cure that end up failing to make the child’s condition better.

Rejection for job opportunities

Transitioning to adulthood poses more challenges for people living with cerebral palsy as they still experience stigmatisation and rejection from workplaces.

Ifeoluwa Anishe, a 35-year-old living with cerebral palsy believes that her mother’s prolonged labour was responsible for having CP. “It took her a long time before she could deliver me. She told me the doctor was supposed to have performed an operation on her but compelled her to keep exercising patience to have a normal delivery. Through that long process during the delivery it caused brain damage to my body.”

Like many CP children at birth, Ifeoluwa didn’t cry at birth nor move, and had to be placed inside the incubator for seven days. He stated that the hospital which he was delivered didn’t have enough facilities to diagnose him and was referred to UITH.

Growing up, Anishe experienced societal stigma and ill-reaction from the public. However, Anishe was able to push through and navigate for success, and now holds a master’s degree in Guidance and Counseling obtained from University of Ilorin.

In 2013, when Anishe graduated from the university, he thought the society would recognise his condition and offer him a job, but in a complete twist of fate, for every workplaces he appeared for job interviews, his condition is often seen before his potential. Despite his Masters degree, Anishe could not gain access to workplaces due to his condition.

After many years of futile effort for job employment, and considering how much is required to maintain his physiotherapy, he resorted to starting a PoS business to fend for himself.

“When they ask me to come for an interview, I always read from their first reaction when they see me that they may not want to accept me. They will just tell me they will get back to me, and that will be the end, because I never hear from any of them.

“When I see this is what all of them were saying, I thought to myself that I needed to find something to take care of myself, that is how I started the POS business and selling phone accessories, with support from my family,” Anishe said.

Anishe’s experience with job discrimination reflects the painful reality many older people living with cerebral palsy encounter, and what children like Ayokunle, Mary, and Lukman are likely to face when they grow up, if they are get educated.

Umar Abdullahi, the Director of Ar-rahamn Biz Limited, noted that many tasks for certain positions in companies often exceed what can be managed by people with disabilities, which is why many are not hired.

“Though it depends on the level of their condition, if they have a severe condition, it is hard to get them hired. For instance, we are a distribution company, so it would be very difficult to get such person to our team considering the tedious nature of the work and their health wellness,” Mr Abdullahi said.

Nigeria is among the countries with the highest unemployment rate, as the country contends with a 33.3% unemployment rate. For people living with disabilities, including cerebral palsy, only 0.3% of the 18 million people within working age are employed, many others are discriminated against for job opportunities due to their condition despite possessing the needed skills and qualifications.

Although the Nigeria Bureau of Statistics (NBS) in 2023 said the country’s unemployment rate stood at 5.3% and 4.1% in 2022 and 2023 respectively following the adoption of new methodology, this was criticised by experts.

Dorcas Adewara, a 29-year-old, was diagnosed early with CP at six months after the parents were referred to UITH from Olarewaju Hospital where her mother delivered her. The type of CP Adewara has is Hemiplegia, which affects only the right-side of her body, which include eyes, and limbs.

Adewara uses her left hand to perform tasks but often faces negative reactions, especially when handing something to people and she is frequently criticised as being disrespectful. She also has unpleasant experiences when she walks in public spaces.

Similar to Anishe, Adewara, a master’s degree holder in Statistics from Kwara State University, Malete, had also appeared for many job interviews, but her physical condition always becomes a focus of the interview and used to judge her potential.

“After I graduated, I had prepared it’s time to find a job. I tried to apply to many places, did a lot of interviews, but I always get the reply that ‘we will get back to you’, and none of them has ever gotten back to me since. Though, they didn’t say it to my face that it is because of my condition that they can’t hire me.

“It’s because of not getting opportunities to work anywhere that made me just resort to beading and fashion designing businesses. Around the time I started, people advised me to pursue a master’s degree, maybe that could make them consider me. So, I went for my master’s and I’m done now, but we are still hearing the same story,” she said.

Therapies out of reach, become luxury

While Nigerian medical experts highlight that regular therapies help improve the health condition of people with CP, specialised healthcare services for people with the condition are often unavailable or stratospherically expensive.

In Kwara State, a home of many people living with CP, the University of Ilorin Teaching Hospital (UITH) remains the only public tertiary medical centre with the capacity to handle cerebral palsy cases. However, many families do not visit the centre regularly or have abandoned treatment due to challenges such as distance, insufficient number of physiotherapists, socio-economic constraints, and societal attitudes. As a result, the centre recorded only fifty children diagnosed with cerebral palsy across the state between 2012 and 2023, which is considered very low.

Obashola Oluwabunmi, a physiotherapist at UITH said improving easy access to therapy and healthcare for people with cerebral palsy could be achieved by better equipping public health facilities and increasing the specialised staff, including in tertiary hospitals.

“Nigeria does not have enough therapists, so there is need to staff public health centres, and even increase the capacity of PHC to offer specialised healthcare for people with the condition, because they are more closer to the people.

“Many parents had stopped therapy for their children because the tertiary hospitals are too far away, and they often face delay in public hospitals due to low staff,” she said.

Nigeria’s primary healthcare centres established to be the nearest health facilities to the people have remained out-of-service for therapies care. This reveals the inequality in access to specialised healthcare for people with disabilities.

Many health intervention programmes have been implemented, but few of them prioritise people with disabilities. The lack of accessible medical care and the high cost of treatment have forced many individuals and parents to forgo therapies, which in consequence do not improve their condition.

With 4,000 members the Nigeria Society of Physiotherapy recently bemoaned the low number of available physiotherapists to serve the country’s population of over 200 million, following the loss of 65% of its physiotherapists to other countries.

Toyin Adebayo, mother to Temisansire, a three-year-old boy living with CP, said the few physiotherapists attending to them at UITH have made them abandon the hospital and seek treatment at private hospitals.

“We do physiotherapy, even though the fees are high because we are now using a private hospital where we can go minimum of twice in a week, but for the government (UITH) we only go twice or three times in a month which was not helping him. But we spend a lot, it requires much money to care for him, which we always struggle to get. In a month, we pay #15,000 for 10 sessions, but for UITH we were using before it was #7000 for 7 sessions.” Mrs Adebayo said.

She, however, pleaded with the government to subsidise the cost of healthcare for children with cerebral palsy, and make schools inclusive for them. “Some schools say they can’t accept him because he can’t work or sit down. The only school which is Tó ómóre at Tanke that wants to accept him is so expensive.”

Helpless disabilities law yawning for action

In 2019, the Nigerian government enacted a disability law that mandates inclusion of people with disabilities in all sectors. The law promised free education and healthcare, equal rights to work, and employment opportunities, along with penalties for discrimination against persons with disabilities to promote inclusiveness.

However, five years later, the law remains inactively implemented, as PLWD continues to face discrimination, limited access to healthcare, and struggle for inclusiveness. Only half of the Nigerian states, including Kwara have domesticated the law, while the PLWD in the other states are left without legal law to safeguard their rights.

Inclusion advocates, organisations, and government agencies have asked the National Commission for Persons with Disabilities (NCPWD) in charge of the law to establish mechanisms that could aid complaints from persons with disabilities, to protect their rights and foster inclusion.

Tobilola Ajayi, a Nigerian lawyer and disability rights advocate, and also the founder of Let Cerebral Palsy Kids Learn Foundation, noted that most people with cerebral palsy likely have an additional condition of comorbidities, mostly epilepsy, which affects half of people living with CP in the country.

Mrs Ajayi, also living with cerebral palsy, and a member of the committee that developed the Lagos State Disability law, lamented the inadequate access to specialised care for people living with cerebral palsy. She urged the government to subsidise the cost of healthcare and medication, as well as providing equipment and assistive technologies to improve the life of people living with the condition.

“People living with cerebral palsy require lifelong care but specialised healthcare is really limited and difficult to access in a country like Nigeria. Majorly, management techniques are usually therapy and medication but there are not enough neurologists and physiotherapists across all states.

“We also need to recruit more professionals in our hospitals, especially our primary healthcare centres because they are the closest to the people, and that would reduce the pressure on the tertiary hospitals that offer care, and bring required care closer to the people,” she stated.

Reacting to the issue of children being rejected by schools and the lack of additional support for schools that accepted them, she stressed that there is a need to educate the public and advocate for the rights of individuals with CP. She added that governments at all levels should prioritise and strengthen inclusive education and policies.

“We are facing the same situation across all states where children with cerebral palsy are turned away from school at the door. The reason for their rejection from schools is the lack of education about the condition which also aids societal stigma.

“For schools that said they don’t have facilities to care for children with special needs, that is just an excuse they often make. If they really want to do it, they will do it. Ask them how difficult it is to get those facilities and staff to care for these children? They will definitely not make a good point.”

By: Abubakar Abdulrasheed

This report was facilitated by the Africa Centre for Development Journalism (ACDJ) as part of its 2024 Inequalities Reporting Fellowship supported by the MacArthur Foundation through the Wole Soyinka Centre for Investigative Journalism.

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