Flowers for warriors

I have just watched Flowers for Warriors, a powerful documentary produced by Ake Book Festival, on three Nigerian families raising children living with obvious disabilities in a society where they are stigmatised. I am in awe of these families, and grateful for their honesty in telling the stories of the rewards and the challenges of raising […]

I have just watched Flowers for Warriors, a powerful documentary produced by Ake Book Festival, on three Nigerian families raising children living with obvious disabilities in a society where they are stigmatised. I am in awe of these families, and grateful for their honesty in telling the stories of the rewards and the challenges of raising these precious children. If you haven’t seen it, biko go watch it. If you are one of those who gawk at people different from you, who think that people whose needs are atypical should be locked up, hidden away from society and not allowed to mingle with other people, be ashamed of yourself and do better.

Anyway, as I watched, I thought of Kaatje, a beautiful little girl with Down’s Syndrome (DS) born to my friends, Dirk and Pascale in Belgium. I say little, but Kaatje isn’t that little anymore. She is a teenager now. Kaatje is the oldest of three children, close in age. Dirk and Pascal lived across from us in Belgium and my youngest (who was the same age as their second son) and theirs were friends, in and out of each other’s homes. One day, my (then much younger) children and I were watching a film with only Down’s syndrome actors and one of my older sons asked what DS was. I explained as best I could and then I said, like Kaatje. The son who asked the question said no, Kaatje is Kaatje. It occurred to me that these children had never thought that she was any different from them or from her siblings. And of course, she wasn’t. She had challenges, but those challenges did not define her. Certainly not to them and not to her family.  Pascale and I used to walk my youngest and her two youngest to school together and back. On the way, we would  have long chats about everything and one day, we talked about the western obsession with perfection. Kaatje had been prescribed treatment (braces, I think) to straighten her teeth and Pascale was adamant she wasn’t going to get them. If Kaatje was going to undergo any discomfort, it had to be for a real problem, Pascale said. By then, Kaatje had already had a heart surgery. About six years ago, Dirk and Pascale moved to a bigger house with an upper floor that could be converted into a living space for an older Kaatje to live independently should she need it. 

I grew up in Enugu at a time when to have a child with special needs (I prefer to call them ‘other needs’) was to be pitied and whispered about. Their needs or comfort did not appear to be as important as Kaatje’s was to her parents.  There was a young man who – now I imagine with the benefit of age and knowledge- had some form of autism but whose parents had obviously no access to a proper diagnosis or help. He walked around town, mimicking the sounds of a car engine and everyone made fun of him.  I don’t remember that he was homeless and I don’t ever recall that anyone was scared of him the way they were scared of ndi ala- mad people who sometimes chased folks. This man was harmless , (most likely) lived at home but wandered the streets everyday being made fun of by people who knew no better ( even if they should have). I imagine now that there were people who thought of him as some sort of a safe stray pet let loose for their amusement. I do not remember any of my friends ever having a sibling with other needs , or going to any home and seeing a child with other needs and now I wonder – watching the Ake documentary and hearing of a man who lived for seven years in a building without ever sighting his neighbor’s child with Down’s who was kept under lock and key  by the parents- if there were homes in Enugu where those children were incarcerated in their own homes, siblings forbidden from ever speaking about them. It breaks my heart to even think of this now.

In a society where parents abandon children for being ‘witches’ (recall the Skolombo epidemic of a few years ago in Calabar where scores of children were sent out of their homes and left to die by parents who were convinced their children were witches), where folks believe that DS for example is a curse and a punishment for a wife’s unfaithfulness, where fathers walk out of their homes when their wives deliver children with medical challenges, where comedians make fun of people with other needs, it is obvious that a lot of work remains to be done in creating awareness and breaking the stigma around certain disabilities.

Fortunately, the documentary by Ake and the works of the profiled parents illustrate that that work has started and has begun well. Long may it continue until all of our children – no matter their needs- have access to rich and fulfilling lives according to their ability.