The spirit child (ensuo ba)

A few weeks ago, I encountered a story I found heartbreaking. I read a child was killed because they were considered a child of the gods. The practice is an outmoded cultural practice that is barbaric and a crime. And yet it still happens.

Several news outlets reported the story of a midwife and her trained teacher husband who abandoned their four-year-old developmentally challenged child to meet her death in a forest in the Ellembelle District of the Western Region. The couple claimed to have been advised by a fetish priest to do so. A spirit child is a child with physical and or cognitive disabilities believed to belong to the gods and, therefore, must be sacrificed to them. In most cases, their parents would leave them in the sea or some kind of water body to drown because they bring misfortune to the family.

The only misfortune I see is a parent not willing to take responsibility for their child who is afflicted with a condition through no fault of theirs.

That child did not choose to be born, at least give them the right to live. Any parent caring for such a child has a difficult task. Depending on the condition, the child may either be severely, physically incapable of caring for themselves or cognitively inept at navigating the world around them, or both.

Hence, they need a lot of support. Conditions range from Cerebral Palsy to Autism, Asperger’s, and Down Syndrome, as well as a host of other learning disabilities. Children are a gift from God, we often say, but we are quick to return to sender if they come short of what we imagined.

We pray for children, with a P.S, “I want them to be perfect.” And if they are not, society tells you they are not worthy of your love or concern. People look on with either pity or disdain. Statistics on children with such conditions are scarce in Africa because of the stigma that surrounds the issue.

The first thing parents should do after a diagnosis is to process how they feel about it. A counselling or therapy session is beneficial. What a parent needs at this point is hope and encouragement; most doctors don’t provide that.

Parents need an avenue to talk about their emotions but always come back to the thought that this is their child. A child a mother carried in her womb for 9 months, which ended in excruciating pain that resulted in a miracle. Not all women get to experience this. This is your gift from the Giver of all things. Would you send it back and block any chances of getting another gift you may want or would you accept it and be rewarded for your humility with something else?

You also have to be emotionally prepared for people’s opinions of you and your child. One particularly hot afternoon, I was visiting my sister who lives in a compound house with a child with cerebral palsy. This boy liked to sit on her porch because he couldn’t walk at the age of four. She, someone who plays with this boy, told me not to look at him or allow him to touch me because he might infect my child with his affliction. I was pregnant at the time.

Enhanced community engagment

My sister is educated. Once I heard another person say that he wishes that boy would wander off on the street and get knocked down by a car so his mother would be free. We need more community engagements to demystify the issues surrounding developmental disabilities.

American Presidents George Washington and John F. Kennedy, banking mogul Charles Schwab, Olympic legend Michael Phelps, actress Whoopi Goldberg, actors Sylvester Stallone, and Danny Glover, as well as inventors of the airplane, the Wright brothers have one major similarity. These great people whose names would forever be etched in history all had developmental disabilities in their younger years.

Developmental Disabilities are disabilities that are obtained before the age of 22. Developmental disabilities can be a sensory, cognitive, physical, neurological-any type of disability.

I never knew children born with cerebral palsy that affected the whole body could speak and walk until I heard of Farida Bedwei, a Ghanaian currently working as a Principal Software Engineer for Microsoft. All it takes is a parent that refuses to see their child as a burden and would move heaven and earth to give the child the tools they need to navigate this world.

In recent years, the country has advanced in the area of accessing help for these children beyond the regional and teaching hospitals. Private clinics and centres now provide various forms of therapy for these children. These facilities do come at a higher cost than their public counterparts.

In 2019, a study showed the prevalence of children living with disabilities in Ghana increased between 1990 and 2016 by 58.4 per cent (Olusanya et al., 2018).

The public facilities tend to be overcrowded which discourages most people from seeking therapy for their children.

Intervention efforts

Sadly, the government has not increased the intervention efforts that these children need. A child with a developmental disability can cause a great financial burden on families and most poor families have resolved to use children with developmental disabilities to beg on the streets. According to the Borgen Project, more than 700,000 individuals in Ghana have a disability, and households that include a person with a disability experience poverty at more than 10 per cent the rate of other households. The National Health Insurance Scheme only provides physiotherapy for the physically challenged. The parent pays for Speech and Occupational Therapy.

We shouldn’t turn a blind eye because culture is involved. Ace Investigative Journalist, Anas Aremeyao Anas, provided video evidence in a 2013 exposé of how this crime happens. The then Minister of Gender and Children Protection promised to do more. The situation hasn’t changed. Non-governmental and governmental agencies should work together to help more parents afford these interventions.

According to the non-governmental organisation, Autism Speaks, research shows that early intervention can improve learning, communication and social skills, as well as underlying brain development in children with Autism and Asperger’s Syndrome. Surgeries and physiotherapy can be of great benefit to those suffering from physical limitations too.

I used to wonder what goes through the minds of parents with children with developmental disabilities because the child is innocent until they become fully aware of their limitations. It is the parent that society’s value judgements and stigmatisation can depress. I imagine how tedious the job of being a caretaker for these children is. So my empathy always goes to the parent than the child; until I found myself one of those parents.

Love is all you need to stay strong during trying times. Just love your child and the world would love them back.