In developing countries such as Nigeria, a diagnosis of cerebral palsy (CP) can lead to stigma and stereotyping. Parents may go into denial, children can be hidden away and families can be ostracised by their communities.
But for Femi Gbadebo – a retired military officer and father to Olaoluwa (19), who has CP – his son’s diagnosis represented an opportunity to change attitudes, reveal facts, and destroy the stereotyping and mystique so commonly associated with this disability.
To do so, he established Benola, a support agency for CP, with the aim to make a difference for families living with CP in Nigeria.
“One thing we’ve never done is hide the fact we have a child with cerebral palsy,” says Femi.
However when Olaoluwa was diagnosed with CP, doctors told Femi and wife Alaba, ‘there is no cure, so don’t go running around trying to find one’.
“There was such a finality in the way they told us,” remembers Femi.
Determined to ensure that Olaoluwa could live the best life possible, the family travelled to England and India for treatment and surgery.
“Travelling with a child with CP and seeing his experiences in hospitals in other countries opened my eyes to the problems of disability and disability management in Nigeria,” says Femi. “I realised that we needed to focus on identifying the real issues and educating the government about CP.”
A gap that needs to be filled
As a former officer in the air force, Femi wanted to use his skills to help the community that his son was part of. “I knew I could bring in leadership and management expertise to an area that was lacking these skills,” says Femi. On 26 February 2013, Benola – a not-for-profit organisation committed to supporting and educating the CP community – was formed.
“We wanted to focus on high-level advocacy, counselling and referral services for the CP community,” Femi explains. “We said, ‘Let’s educate ourselves, let’s build confidence in medical and special education services, and let’s focus on the rights of people with special needs’.”
Benola began to gather interest by holding workshops and conferences, but medical experts were initially reluctant to get involved. They hadn’t heard of Benola, or Femi, and had no confidence in them. Likewise, the disability community was suspicious and thought Benola was planning on cashing in on the few families/sponsors that were already in their care or working with them.
“The first 18 months were very tough,” he remembers. “We weren’t winning over either side.”
However, Benola quickly started to attract interest and gain credibility, and the momentum grew – as did Benola’s belief in where the focus needed to lie.
“We knew the most important step was getting parents to accept the condition of their child,” says Femi.
“We wanted families to come out of hiding.”
The stigma and belief that CP is evil was very real in Nigeria. Incredibly it was impossible to see a photo of a child with CP in public before 2013.
“We said to the families, ‘We’re not medical experts and we’re not here to treat your child. Instead we’re here to give you support and knowledge. We’re here for you.”
Pathways of community support
In the first year of operation, Benola created a road map for CP in Nigeria. Building a referral pathway was one of the most important outcomes of that work. From the child and rural health-care worker to the paediatrician and specialist, it envisaged a support and early-intervention process.
As a parent of a child with CP, Femi’s knowledge was always comprehensive but also narrowly based on the needs of Olaoluwa, who is fully dependent. However, over the first year, workshops and interactions with families showed Femi that there is a full spectrum of CP.
“Today we have a number of graduates, some with Masters Degrees, and some married with children who are interested in working with Benola as advocates, and showcasing our work,” says Femi. Two ambassadors with CP, Uche and Busola, now work with Benola and, by doing so, are helping to diminish the stigma by showing what people with CP are capable of.
Using the momentum
“Benola is an idea running wild,” laughs Femi. “It grows every day.”
Today, only 3 years since its inception, Benola has been contacted by over 600 families from as far as Egypt, Kenya, Tanzania, Uganda and Ghana. Offering useful, everyday knowledge and understanding about CP and life with CP, its website offers one of the most authoritative sources of information about CP in Africa, if not globally.
Each year Benola holds at least four major forums with specific themes, and experts and resources gather to support it. Not afraid to address the difficult issues, themes have included ‘Cerebral Palsy: The stigma, the fears and the reality’, ‘The many faces of Cerebral Palsy’, and ‘Cerebral Palsy: The realities of aging.’
The energy and ideas bursting out of Femi are infectious; however, they are grounded in an underlying belief in fairness and acceptance.
“Government leaders need to understand disability and how to create an inclusive society,” suggests Femi. “All it takes is for those in positions of authority to understand the rights of people with disabilities, acknowledge their place in society and realise that by accepting to use their offices as platforms for change, they can make a difference.”
With the state fully supporting the important work of Benola, land has been provided for a facility to be built by the organisation specifically for the purpose of building capacity and providing much needed assistive technology. The future plans are bold yet pragmatic, and include university awareness campaigns and curriculum changes to include basic CP training for trainee nurses and doctors.
Still in its infancy, Benola has been self-funding up to this point. “It’s the generosity of true friends who help us,” says Femi. Yet the time has come to structure the organisation for formalised donor support in order to maintain the momentum for growth.
A better way
It’s important to remember that Benola began with one family – Femi and Alaba Gbadebo and their son Olaoluwa, and their determined belief that there was a better way for children and families with CP in Nigeria.
“Every parent who has a child that is not ‘normal’ needs to understand their child is special,” suggests Femi. “And because of this child that has come into their home, they too are special.”
“Olaoluwa has taught me so much – patience, tolerance, love,” says Femi. “And it is very fulfilling – knowing I am doing something for my son and that my wife and I are making a difference.”
A difference is just what Benola is making in the lives of so many families with CP in Nigeria and Africa. One man’s vision has become the reality for Nigeria’s CP community and is a template for other developing nations. Benola is showing how to create acceptance and understanding for a community that is simply looking for that: acceptance and understanding.