Monday, April 16, 2018

Pitying does not put food on the table

A special mention was given to a woman at a ceremony for the fact that she had two children with cerebral palsy, the person who did the mention said: “We can imagine that her life is much harder than anybody here”

She called the woman in front to give her a warm hug which attracted a paltry applause and then the woman went back to sit down.

My mind begun to wonder, recounting in my mind people who have more than one child with cerebral palsy. On top of my mind were two people, Nana Yaa, an industrious young lady with three children of which the first and the last both have cerebral palsy

And then Golda, a woman with four children all having special needs and some with multiple disabilities. I recalled how timid the latter had become because of her children and how she got to a point where she thought it was right to take her life and take the life of her children too.

She was fed up not with the daily handling of her children but the ridicule that society seems to place on her.

Meeting Golda for the first time, after her attempted suicide, I asked her why she had decide to give up after holding on for too long, amidst tears she said, “A woman insulted me that I have given birth to mad children, I just did not know how to respond.”

I looked intently into her eyes and said: “You should have responded with your mouth, it is not worth taking your life over that insult, next time when someone insult you like that respond with your mouth and make sure you make the person feel stupid.”

She looked up at me and smiled. Now I feel proud of who Golda has become, The Special Mothers Project with the support of the Presbyterian Inclusive Child Development Programme supported her to learn beading.

Golda is busily into bead making while doing other things to support her family and have a life. She is now very lively and beams with smiles whenever we meet.

She nearly lost her self esteem because of her children and how society treats her but for the intervention of the Special Mothers Project an advocacy and awareness creation programme on cerebral palsy in Ghana.

Usually when mothers of children with cerebral palsy are gathered, it is mostly about someone going to give them diapers, detergent and food. Many people who re-count experiences with mothers of children with cerebral palsy do not forget to say how difficult life is for such mothers.

I vividly recall on several occasions’ people speaking about such mothers with so much sympathy that words cannot describe, it is usually “Oh! Hmmm! These mothers go through a lot”

However, I have seen mothers of children with cerebral palsy who live a hearty and happy life, I have seen mothers of children with cerebral palsy who are lawyers, bankers, journalists, and diplomats just name it.

I have seen a mother who is a lawyer and uses her status to organize annual disability lectures where policy makers meet to help improve the laws in Ghana as it stands.

I remember when I started my advocacy and was all over the media a friend of mine told me: “Hannah do not do it to attract pity” there must be a solution.

In my mind I wanted to be part of the solution, a solution where Ghana understands the situation of children with disabilities and cerebral palsy specifically so that no school will turn away a child with cerebral palsy just for that reason

A solution where everybody understands that my child is only differently-abled and responds to her with love, a solution where society doesn’t make her feel that she does not belong or is not part of it.

A solution where I can drop off my child with cerebral palsy in an up to standard establishment to enable me work and earn a living. A solution where therapists understands that my other children, career and my husband equally needs me.

A solution where there are community establishment or even home services where an orthotics can come over to measure my child for  an Ankle Foots Orthotics Splints (AFOS) and deliver  at home  at  a reasonable fee.

A solution where more and more people begin to build their careers around caring for children with cerebral palsy such that it is possible to call an organization for a home service.

A solution where there are one stop shop establishment where a child can be educated, have therapy, have access to equipment and quality care

These solutions require an empowered parents of children with cerebral palsy, who are able to work and earn a living so that they can afford such services, from my experience in dealing with mothers many mothers have either become timid or passive.

These solutions requires government support and effort in ensuring that the state caters for children with disabilities according to their unique needs

Many mothers in talking about their children will usually say “They say” referring to a therapist or a supposed expert on their child’s condition, many rarely say “I think” for fear of being scolded. Many have developed low self esteem always placing the opinions of others above themselves.

Sometimes mothers are made to feel that it is their fault that their children are not doing well, perhaps they should be going to the hospital more, and they possibly should sleep in therapy rooms in the hospital that is the only time a mother is seen as “trying very hard for their children”.

I have decided not to put myself in a situation where I no longer have life apart from taking care of my daughter with cerebral palsy. 

Yes managing a child with cerebral palsy is tough, tough enough to make you lose your self esteem and livelihood but cerebral palsy is not the end of life and man must live and eat!

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