Written by: Doregin Amoh Baffour
A congenital disorder of movement, muscle tone, or posture. Cerebral palsy is due to abnormal brain development, often before birth.
CP as it’s commonly known is caused by the incomplete make-up of the brain cells of a person.
Although this disorder is common in almost every country, most people do not know or have no clue about this particular disorder.
With 6th October each year dedicated to celebrating people living with CP, it came as a shocker to me when some people still didn’t know about this disorder.
World CP Day is an opportunity for the whole world to come together to recognize and celebrate the 17 million people around the world living with cerebral palsy. On 6 October every year, individuals, families, and organizations celebrate by sharing stories, hosting events, and wearing the color green.
Talking to some people, it could be seen that five out of ten people only knew about this CP disorder.
But most importantly, how do people living with this disorder fare? That was one main important factor I considered during the planning of this article.
Talking to some caretakers of these people, I wanted to know how the people live and ask them about the challenges they( people with CP) face.
According to one of the caretakers, People with severe cerebral palsy sometimes have difficulties with swallowing, breathing, head and neck control, bladder and bowel control, eating, and have dental and digestive problems.
Another one also said this disorder also affects a person’s posture, mobility, how to communicate, eat, sleep, and learn.
To him, parts of the body affected by cerebral palsy, how severe it is and symptoms will differ for each person. For example, one person may have a weakness in one hand and find tasks like writing or using the keyboard challenge. Another person may have little or no control over their movements or speech and require 24 hours of assistance.
I still haven’t got a good explanation of the challenges they face with the speech so I engaged a different person and this time I asked him directly to tell me how challenging is it for people living with CP to communicate and he gave a vivid explanation of it.
According to him, Cerebral palsy can affect a person’s ability to finely control the muscles around the mouth and tongue that are needed for speech. The coordinated breathing that is needed to support speech can also be affected, Example some people may sound ‘breathy’ when they speak. Some people with cerebral palsy may not be able to produce any sounds, others may be able to produce sounds but have difficulty controlling their movement enough to produce speech that is clear and understood by others. One in four people with cerebral palsy cannot talk according to him.
I asked if they can still get educated and according to him they do but most Children with cerebral palsy may experience specific learning difficulties. These may include a short attention span, motor planning difficulties, and language difficulties.
With them needing such much attention, I needed to ask them what challenges do they themselves encounter when taking care of them and by her facial expression right after I asked the question I could sense it wasn’t a honey-like situation.
According to his Mum, “He is able to sit on his own, but he cannot crawl or walk. He has to be lifted for all activities. He cries a lot during the night and I cannot sleep … I only rest when my mother visits.” female, no education, unemployed, 37 years old)
Another Mum said “The child has stiff muscles all over the body he cannot move. He does not sit or move. Everything is done for him. You have to feed him, wash him, lift him a lot, and clean him after he soils his nappies. That is too much for me to handle considering I have other small kids now. I am constantly tired and have these headaches that don’t go away.” female, no education, unemployed, 39 years old)
One Father was however disappointed with the government for not giving them the much-needed support.
“I am all she’s got, I have to go to work and pay the Nanny that takes care of her, The Nanny sometimes gets tired and I have to take care of her myself. I skipped work to do this and even after countless reports to the manager that I have a child with this disorder, I still get warnings anytime I skip work” Tell me if this is fair? He asked me. I could feel his pain because he can’t leave the child and go to work when the Nanny is not around.
I asked what does he suggests the government should do to help people in similar situations like him.
“I won’t ask for much but if we could be given some free days off just to be with our children that won’t be bad” he stated.
Some mothers expressed experiencing a lack of support from family, friends, and community members. This resulted in them being socially isolated which was partly as a result of fear amongst mothers that people would not accept their children or blame them for the condition of the children:
‘I have not had much contact with my friends and neighbors as I stay indoors with my child most of the time. I am afraid of being laughed at or other people not accepting my child the way she is, it would hurt. I also don’t want anyone to blame me for the condition.’ female, secondary education, unemployed, 31 years old)
Another dully said “My friends laugh at me. He is a very difficult child, if I go with him to church, we spend the whole time outside so I have stopped going to church, not even town. Unless I’m in dire need then I ask my mother to help look after him …’, female, secondary education, unemployed, 22 years old)
Some mothers told me about the experience with the health care system including a lack of provision of assistive devices, attitudes of health care professionals, and lack of provision of transport as is illustrated in the quotations below. One of the mothers found health care professionals unhelpful and disrespectful:
‘If the government cared, we would not be suffering the way we do. I have failed to purchase any of the assistive devices I was advised to buy. I don’t even have enough money to take my child for physiotherapy. Do policies exist?’ female, secondary education, unemployed, 31 years old)
Cerebral palsy can’t be cured but with more attention given to people living with it, they could become a bit okay.
It is not transferable, meaning you can interact and move with people living with it. We should not isolate them from society instead we should give them the full support we have. That alone will make them feel at home.
What I will suggest is, it should be communicated to society more because most people don’t have any idea about it. The government if they can help, should put in measures to help support families in such situations. Because it is clear from the findings that, most mothers and caretakers find it very difficult to cater to people living with CP.