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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