Akos (Not the real name) sells sachet water on the streets
of Madina, a suburb of Accra, early in the morning, she will wake up to go earn
a living for herself and her three children, one of whom has cerebral palsy
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| A section of participants at the Special Needs Parenting Summit |
She lives in a single room rented apartment at Ashaley
Botwe, a suburb of Accra, when she is leaving the house in the morning, she
will lock up her seven years old son with cerebral palsy who looks like a one
year old in physical stature
Sometimes she is away till evening, she needs to make some
money to be able to buy him diapers and make porridge for him the next day, once
he is still alive.
At the Special Needs Parenting Summit organized by the
Special Mothers Project, an advocacy and awareness creation programme on
cerebral palsy issues, Akos, shared her story with me.
She said: “My sister, I know it is not the best of life for
my son but what should I do?, one time, I came home to meet my son in a pool of
blood, he had a seizure and had bitten his tongue so hard, he was bleeding, he
was snapping in and out of consciousness, I even thought it was the end of the road
for him but he survived.” She said sighing in between narrating the story
Akos said she had attempted enrolling her child in school so
that at least someone could take care of him while she goes to sell but every
school she had ever approach rejects them.
“One of the schools even ask me why I wanted to enrol such a
child in school, so I realized that school was not a choice for him, I used to
carry him at my back while I go to sell but I had to answer
too many questions
from the society.
Some people even saw me and told me to go to the hospital
and stay there with him, they do not understand the condition, and they usually
think something evil has befallen us, people look on me with pity, others with
shame, at a point, I made a decision to lock him up while I struggle to earn a
living.
Akos said she does not feel guilty for doing that, she is
doing her best, “Sometimes, I even think that he is better off dead than alive, at least if he
dies, he will rest from all the pain and suffering but for now, he is rejected
by society and it is such a pain.
On accessing healthcare, Akos said, there has been a lot of
back and forth, “we have gone to many hospitals, we have spent a lot of money
on seeking healthcare, sometime ago, I borrowed money from everyone I know and
just spent on health care.”
“We were required to do a lot of labs and scans and
sometimes, it looks at as if nothing come out of it, apart from that, in a
week, we are required to go for different kinds of therapies, I have to go to
Korle Bu about four times in a week for some 30 to 45 minutes physiotherapy,
Occupational therapy.
Akos said, as for speech therapy it is recently that they
have started talking about it, “apart from the long queues, we waste the whole
day at the hospital, I am unable to sell anything on days I go to the hospital
so eventually, I made a decision that going to the hospital is a waste of time.
“I have resorted to using herbs and it has been helpful and
more effective than the hospital”
Akos’s situation is not a unique one, it is a common
situation or story shared among many parents especially mothers of children
with cerebral palsy and other disabilities
It looks as if there is an unwritten law which says: “kill
children born with disabilities in Ghana for we cannot care about them”
There are no social support systems and it seems society
puts impediments in the way of a special needs mom just to make life a little
more difficult for them
A communique issued at the end of the Special Needs
Parenting Summit made some suggestions that government can implement to enhance
the lives of families raising children with disabilities,
Among them is the need for government to make healthcare
free for children with complex health needs at least for the first five years
of their lives
The communique also urged government to ensure the effective
implementation of the Inclusive Education policy, every government school
should dedicate one classroom for children with Special Needs where people
could be trained to take care of them while the parents work to earn some
income
Parents raising children with disabilities should be able to
access the District Assembly Common Fund for persons with disabilities to help
with the high cost associated with nurturing a child with disability
In my opinion, implementing just the above mentioned
suggestions in the communique will enhance the lives of families raising
children with disabilities.
Sometimes, I feel that in the eyes of the public, they
assume that everyone with a child who has special needs should be given hand
outs,
The Sustainable Development Goals by the United Nations
which Ghana proudly subscribes to, among others calls for an end to poverty in
all forms, seeks to ensure healthy lives and promote the well-being for all at
all ages and seek to ensure inclusive and equitable education and promote
lifelong learning opportunities for all
In the light of these goals, children with disabilities in
Ghana are really left far behind, even though countries including Ghana have
pledged to leave no one behind
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