“Why did you have to tell them that your baby is adopted?” This was a nurse, Mrs.N.W at the Guinness Eye Center at the Lagos University Teaching Hospital,(LUTH) where Ziim was referred to have her eyes checked. That was January 2007, she was seven months old. I opened my mouth and no sound came out, my eyes were wide in awe. She continued; “you should not have told them that she is adopted, you see, that is why you are being treated the way you are”. I was too shocked to say anything, all I could do was cry. This was in the early days of our journey with CP when I cried at the slightest provocation.
Events in recent times made me recall this incidence. I was talking with some
parents mothers about the need for us to work together to raise funds to bring in Conductive Education in Nigeria. We all agreed that it will be beneficial to our children and other children with CP. I told them that most centers in U.K that work with principles of C.E were started by parents whose children have CP. One of the mothers said that she may be slow at approaching some people she knows that might help because her husband may not want the fact that they have a child with disability different ability, to be public knowledge. I did not know whether to feel angry or pity for her. I had met a mother last year who told me the same thing. Then I wanted us to fundraise and take our children to Denmark for ABR therapy.
I am always at a loss as to what to say to people who hide things that are not necessary. A lady once came up to me at yaba and said; aunty I watched you on the program His Word made Flesh, ha you get liver oh!, you not only came on air with your child with challenge, you were bold enough to say that you adopted her, ha, I admire you oh, me no fit do am oh!! I asked her if that was all she heard. Did she not hear what I am doing with the child and other children with her condition. Hm.. that one dey oh, but, mein…you get liver. I just smiled and attributed her talk to ignorance. Here we live with that believe of “lt’s not my portion, I reject it, It is well even in the well.” Such that when we are going through issues, we do not share with people who may benefit from our experience. I call it subtle denial. I remember once seeing a friend and wondered why she was gaining so much weight, she told me that she was taking some fertility treatment, adding, “they said that my enemy is not ovulating, na dem know, it is not my portion”. I asked; why then are you taking the drug that is meant for your enemy and bloating up? She did not give my any reasonable answer.
A lot of parents with children with
disabilities unique abilities do not bring out the children, they would rather lock them up at home. I attend one of the biggest churches in Lagos in terms of congregation, I am yet to see one child with CP or hydrocephalus, or dawns syndrome, I have seen one with Autism (my friend’s son). On Tuesday, I was talking with a priest and I wondered aloud if I am the only person that God has this type of love for in this parish of over 15,000 (fifteen thousand) registered parishioners.
I know that the structures could bar us, but if we do not come out the people that make the structures will not see the need to make structure that could accommodate us. For instance, the priest I was talking with on Tuesday had never seen a child like Ziim. When I teased that very soon we may not be able to attend mass because of lack of accessibility, he asked me if “they increase in size” No, I did not get angry, I just felt pity at his ignorance and educated him.
I understand that raising a child with Cp or any form of disability could be “embarrassing” in this society where the ‘ugly’ should be hidden in the confines of institutions, where coming out with a child like Ziim is evidence of your lack of faith for have you had faith she would have been healed. But hiding the fact will not solve the problem rather it will compound it. I shudder to think what would have become of me if i had lied when we started the neuro clinic in LUTH about the birth of Ziim. As at then, I did not know the relationship between all the information they wanted concerning her pregnancy, birth and her condition! So if I had “manufactured” the history as that nurse would have wanted me to, to avoid embarrassment, by now I would have been facing the mother of all embarrassment!!
My taking Ziim to everywhere I go (not that I have a choice though) is some sort of raising awareness of the condition CP. Raising awareness is an important part of what we do at theCpCenter. I believe that knowledge will break down barriers and help in changing the lives of children with CP in our society. We can not do that by hiding our special children, by subtly denying them. We can not act as one force to ask and get services that would be beneficial to them if we pretend that they do not exist or what do you think?.