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Cerebral palsy: changing the narrative

A spirit of entrepreneurship can be one of the most powerful ways to change the world for people living with cerebral palsy. A new narrative is needed and that is the vision of guest blogger, Hannah Awadzi, Executive Director of the Special Mothers Project in Ghana.

Challenging assumptions

A young man reached out to me the other day, wanting to make impact in the lives of children with special needs.

He kept asking, “What can we donate to help children with cerebral palsy?” Instead of giving him an answer, I invited him over for a conversation.

I asked him why he wanted to donate to children with cerebral palsy and why he is into philanthropy, since that it not a very common thing with young Ghanaian men.

He said: “I had a friend who got paralyzed suddenly, doctors said it was cerebral palsy .* I really cannot connect the dots on what the doctors are saying but it occurred to me that I could reach out to people like my friend and help out.”

“I do not know how many of such people are paralyzed and forced to beg on the street because of that, I want to make an impact.”

I could see that the young man came with an open heart and a clear intention but needed to know more about the category of people he had chosen to help.

So I provoked him a bit, I asked him, that supposing he donated bags of rice, bails of clothing, packs of diapers and wipes and many other things and I call him after a few months to say that the things are finished and I needed more what will be do.

He said, “I will be upset,” then I asked again, “How do you expect me to do anything when you have committed yourself to supply me with all I need till I die?”

He seemed confused by my line of questioning so I told him that I appreciated his commitment to support children with special needs, but it could be directed in a more productive and sustainable way instead of just donating items to them.

A different way

The narrative on cerebral palsy in Ghana, most of the time has been “we are poor, we need food, we need diapers and the like….” It is mostly communication that is intended to draw pity to families raising children with cerebral palsy, with the aim of receiving handouts.

So the story has remained the same over the years, I gave birth to a child with cerebral palsy and I had to stop work and take care of her, now I don’t have anything blablabla which to me is not just pathetic but appalling.

Instead of working together to ensure that there are policies in place that takes care of children with cerebral palsy in the long term, many prefer being given some handouts, many are made to think that there is nothing that can be done except to beg. In any case begging has become a very lucrative business for some people in Ghana.

The other day someone pointed to me a beggar who had built a mansion out of his begging business, in fact many beggars on the street are able to recruit able bodied young men and women to push them under the scorching sun, it is very lucrative I learnt.

Spirit of entrepreneurship

Anyway back to the age-old narrative, even in Ghana, I have seen mothers of children with special needs who have made tremendous impact.

One such mother is Mrs Serwaa Quainoo who started the Autism Awareness, Care and Training Center which provides training and educational services to children with autism in order for them to function more effectively in society.

Aunty Serwaa as she is affectionately called has made so much impact in terms of creating awareness on autism, back in the days and even now, I use to see her on TV talking about autism.
Her organization serves many families raising children with autism.

Another person who inspires me outside the borders of Ghana is a lady by name Shona McDonald, mother of a lady with cerebral palsy turned entrepreneur because of her daughter.

She started an organization called ShonaQuip. Shona, at the age of 19 had a daughter, Shelley, who was born with cerebral palsy (CP). At the time the only wheelchairs available were for adults and even these were only designed for temporary transportation within hospitals. “Shelley was given a foam-padded folded cardboard insert for her pram with a large piece of webbing to tie her in. I learned that once CP children outgrew their prams the option was to tie them into hospital wheelchairs,” she explains.

Refusing to accept what was available, McDonald poured over books on CP sent from a cousin in the UK. What she noticed were the wheelchairs. “There was an amazing photo of a chair from Sweden so I asked my cousin to buy the motor and wheels from England and bring them over.” Parts in hand, she approached the Biomedical Engineering Department at UCT where, working from a photograph, she and Mike Price built Shelley a chair.

The motorized chair solved Shelley’s mobility challenges so McDonald moved on to other issues, developing communication cards so that Shelley could tell her parents what she wanted, and modifying toys so she could play. Being involved in parental support groups, it was only a matter of time before people started requesting similar products for their disabled children, and a business was born in McDonald’s home.”
I think that our needs should lead us to innovations, inventions and solutions and not the other way round.

A movement for change

The Special Mothers Project, an advocacy and awareness creation program on cerebral palsy, is starting training seminars for various stakeholders in Ghana to advocate, deepen knowledge and create a change.

Our first training seminar scheduled to take place mid-October is on the theme: “Entrepreneurship Opportunities in the Special Needs World – Changing the Narrative”

Mrs Hannah Awadzi, Executive Director of the Special Mothers Project said “I think that the lack of support services and systems for families raising children with cerebral palsy is what pushes many into begging and pity partying.”

Ghana will join the rest of the world to celebrate World Cerebral Palsy Day on 6 October, the day celebrates the achievement of persons with cerebral palsy and their care givers.

Mrs Awadzi said “It is about time we change the narrative on cerebral palsy in Ghana. We want to make cerebral palsy a “celebrity”.

LINKS

* NOTE:  Cerebral palsy is a disability that is acquired before birth or soon after. An injury causing paralysis later in life is not classified as cerebral palsy.

 


Date: 26 Sep 2018

Category: Contribution Quality of Life

Author: Robyn Cummins