I recently had an opportunity to talk to a pastor of a well-known church in Ghana about cerebral palsy (CP). The church is known for organising charity events for people with disability, including free medical screening. Nevertheless, when it comes to CP as an issue, knowledge as it seems remains lacking.
As we talked, he would interject and ask:
“So these children, I mean the children with cerebral palsy, do they have any future?”
The first time he asked I wondered what answer I should give him, so I intentionally pretended I did not hear him. But when he asked a second and a third time, I started pointing to him to people with CP who are in fact living what I would call a fulfilled life.
I had no cause to be angry with the question the pastor asked, knowing very well the very low level of awareness on CP at a national level, coupled with the fact that children with with CP are hardly visible in public spaces. In Ghana we hardly see children with CP at social gatherings or other events.
I keep pointing people in Ghana to one lady I am personally very proud of. Her name is Farida Bedwei. She is a well known IT entrepreneur and she has CP.
One thing I try and hammer in anytime I talk about Farida, is that despite the fact that does not walk, she has achieved so much and been recognised for it in Ghana and beyond.
Elsewhere, people living with CP continue to have so much impact with their lives, and as a mother of a child with CP, Farida and others like her, give me so much hope.
I started the Special Mothers Project, an advocacy and awareness raising programme, aimed at empowering mothers with CP children in Ghana to better understand and handle their children’s condition and their needs.
Over time, I came to realize that it is not only mothers who need empowerment, but our society as a whole.
I dream of a time when a mother of a child with CP in Ghana can walk boldly into a crèche or an early learning development centre and be welcomed without any hesitation.
As it is now, acceptance of a child with CP in an early learning development centre is at the discretion of the owner or head of school.
Those who would readily accept a child with CB are those charging for their services, and the fees are very high, in excess of GH₵1200.00 (US$304). Sometimes admission of a child with CP even incurs extra charges. Overall, this severely limits the number of children who can access these institutions.
The Special Mothers Project is looking forward to organising training sessions for pre-school staff to educate them about the situations facing children with a disability and how a little love and encouragement can go a long way towards ensuring these children become an asset to the world.
The project also serves as a counselling point for mothers of children with CP, who totally abandoned by the state, too often feel a sense of despair. The fulfillment I feel in knowing that I act as a small dose of hope and encouragement in a rather hopeless situation is great.
We have already started organising workshops for mothers/parents and care-givers to empower them and provide the basic knowledge they need to manage the children. Now we are calling for support from corporate Ghana and the international world to lend a hand in our worthy project.
The Special Mothers Project will be joining the rest of the World to celebrate World Cerebral Palsy Day on October 5. We have already outlined activities to create more awareness.
We need to advocate to influence policy favourably for families of children with cerebral palsy and this task is a long, arduous and costly one. Most importantly, it must be a collective effort.
Those wishing to support the Special Mothers Project can do so by consulting the project’s Facebook Page
