Monday, September 24, 2018

Cerebral Palsy: Changing the narrative

 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 dot 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.

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.

Anyway back to the old aged 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 McDonalds, 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 motorised 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.

The Special Mothers Project an advocacy and awareness creation programme 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”

Tuesday, September 18, 2018

Inclusiveness: The best therapy for a child with cerebral palsy

I had an insightful conversation with a family that has raised a 28 year old boy with cerebral palsy.  As a way of giving back to society the family had decided to be fully committed to advocacy issues on cerebral palsy

They had come to see me to discuss possible advocacy issues that they could raise, as they shared their journey of their son with me, the sister of this young man said something that I could not stop pondering over.

Alberta, a senior sister to Nii, the young man living with cerebral palsy said: “I think inclusiveness is the best therapy we can give to children with cerebral palsy.”

Alberta explained : “We lived in a house with our uncles, aunties and cousins, there were a lot of children around, my brother Nii played with us, he was challenged to do things for himself, we had one cousin who was always running, he was also a boy, Nii wanted to play with him, so he forced himself to run, when we were young, you will always see him (Nii) with bruises around the mouth, he fell many times but I guess that is what challenged him to do things for himself.”

Ghana is currently talking inclusive education a system of education where all students regardless of their needs are welcomed by their neighbourhood schools in age appropriate regular classes and supported to learn, contribute and participate in all aspect of the life of the school.

Inclusive education is about how we develop and design our schools, classrooms, programmes and activities so that all students learn and participate together.

Some Experts in education have listed a lot of benefits of inclusive education, saying that inclusive education has the ability to develop the individual strengths and gifts, involve parents in the education of their children, foster a school culture of respect and belonging and provides an opportunity to learn about and accept individual differences, lessening the impact of harassment and bullying.

Inclusive education has the potential to positively affect both the school and the community to appreciate diversity and inclusion on a broad level.

In Ghana, many teachers are still wondering how possible it is to fully implement inclusive education, there are some who thinks  that children with special needs especially those with disabilities should be separated since they have a tendency of slowing the academic work and pulling back the regular ones.

However, there are many parents of children with cerebral palsy calling for inclusive education, one of the parents said, “I do not expect my child with cerebral palsy to score 100 per cent, I just want a social life for my child, I know my child is intelligent and will excel at his own pace.”

Another parent of a child with cerebral palsy who expressed believe in inclusive education said in an interview that “My child with cerebral palsy lives together in the house with her other siblings, they play with her, they heckle her and they treat her as their sibling, I see that my daughter has really improved in terms of her responses because of her siblings.

She said, children with cerebral palsy especially need to be in mainstream school, they have movement issues but most of the time, their brains are intact, they can learn.

Another parent of a child with cerebral palsy said, inclusive education is possible, it is the willingness of the school and staff to accept children with cerebral palsy that is left.

Monday, September 10, 2018

With God Cerebral Palsy Centre temporarily closed

The With God Cerebral Palsy centre, a place where parents of children with cerebral palsy could drop their children for care and pick them up later has been temporarily closed.

One child who was resident at the centre has been relocated to the Impact Care and Rehabilitation Foundation, (ICRF) for care while the other children who came on daily basis has been told to wait till further notice

Mrs Ellen Affam-Dadzie, Executive Director of the Centre said: “running the centre in her home has interfered with her personal family issues, I am looking for a place where I can rent and operate the centre from.”

Apologizing for the inconvenience the closure has caused parents, she said I am also studying Community Based Rehabilitation and Disability studies to ensure that I get it right when the centre bounce back.

She called on Ghanaians to embrace children with cerebral palsy and their families