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
|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