Celebrating our super parents: Guest Author Odumbe Kute

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It occurred to me yesterday after something I posted that prejudice and discrimination, whether conscious or sub-conscious is a very big deal in our lives.
I’ve been a disability and human rights activist for over 24 years and the one thing that rings true through all the work I’ve done around the world is
this. No amount of legislation, education and advocacy will ever cover for ignorance and prejudice about disability that is experienced every single day
by those affected.

It’s not just the general public. The worst offenders are family, close relatives and people who masquerade as friends. The thing is this. Most people
act the way they do, discriminate like they do, judge like they do, say really stupid and very hurtful things like they do, gossip like they do, show their
prejudice like they do because they’re afraid. You’d like to think that they’re just ignorant, but the truth is that they’re afraid. Afraid of what is
different, afraid of their own insecurities, afraid of how they would cope if they were ever in a situation where they would acquire a disability, give
birth to a child with a disability, have a spouse who acquires a disability or have to care for someone with a disability.

They go around calling themselves “normal”, whatever the hell that is. Here’s a wake up call. At least 1 of every 5 people in the world has a disability
of some sort, most of them hidden and not visible to people. It could be mental health, it could be chronic back pain, it could be sickle cell, it could
be a neurological condition ranging from autism to ADHD, it could be any number of debilitating conditions that people are shit scared to talk about for
fear that they might get labelled or judged. They refuse to look at it as a disability. They only choose to consider disability as a physical and medical
thing.

I haven’t even begun to talk about the hundreds of thousands of parents who have a differently abled child. Our society is brutal. Take the mothers of
kids with a disability from autism to CP, from physical to sensory disabilities. Those who stay in relationships and marriages after giving birth to a
differently abled child are considered the lucky ones. But are they really? Most mothers of children with a disability are single because they’ve been
abandoned at the traffic lights. They’ve been ostracized and become outcasts in their own families, in their marital families, amongst their friends and
relatives. They are seen as vessels of witchcraft, accused of bringing forth defective offspring that sully the gene pool of the family. They not only
have to deal with the challenges their child or children face, they are also as individuals, totally discriminated against and judged for every move they
make.

Let me tell you something about these women. They are amazing. They are Ninjas. They are super women, most of whom have to give up their entire lives,
their hopes and dreams and they sacrifice everything to give their differently abled children the best chance they have in life. They live isolated lives
because of the open and mostly hidden discrimination they face by people closest to them. But the one thing that will never be taken away from them is
their resolve, unconditional love, determination and sheer stubbornness in not giving up their default role as primary care givers to their children.

Most if not all these women go through hell every single day to make sure that their children have the best they can have in life, despite their individual
means. Some can hustle and get a shilling here and there, some don’t have that opportunity. Even for families who would ordinarily be financially stable,
the cost of therapy, medication, education, nutrition – you name it, is capable of bringing them to their knees. Some of these women cry themselves to
sleep every single night praying to their God and asking why he or she has forsaken them. And yet, the next morning, they wake up and do it all over again.

I submit to you that you “normal” people as you call yourselves; you people who have perfect lives that allow you to pass judgement over those who have
a different life; you people who stare and shake your head in disgust at a mother whose autistic child is having a melt-down in a supermarket and saying
that “what is wrong with that mother, her child is spoilt”; you people who have the luxury of not knowing the pain of a mother with a non-verbal autistic
child who is in unbearable pain and distress and unable to express themselves; you people who judge and come out with ignorant and stupid comments like
“that one was bewitched”, “that one’s dowry wasn’t paid and that’s why they have a disabled child”, “that one must have done something in a previous life”
– I submit to you that whichever God you pray to is kind enough to have spared you and gave you the right to be ignorant and stupid. Because if you were
ever in the situation that others are in, society has to be lucky that your not one of the ones who will be able to cope with the burden and responsibility
of caring for and loving someone who is different. Pray to that God of yours to never put you in a situation that you become disabled, a spouse or child
of yours becomes disabled, or you give birth to a child with a disability.

Why have I written this post you may ask. It’s because of the sheer amount of in-box messages I’ve got from parents of children with a disability, mostly
those on the autism spectrum, who were absolutely furious that I had to explain that my son is autistic to parents that commented on my post and took the
“your child is bloody spoilt” view. There is a parallel here to real life where the constant need to explain to those who are discriminatory and prejudicial
has become tedious for them and enough is enough.

Let me conclude with a simple example. A couple of weeks ago, a distressed mother on one of the support groups posted a question asking what they can give
their autistic child to calm them down when she has guests. Let me first say, many kids on the autism spectrum will be on medication, and this should only
be for their benefit and if it improves their development. But the thought of having to medicate your autistic child to make it easier for guests? I was
like – Fuck that. The only intervention needed is to bitch slap those guests out of your house. If your own guests cannot come to terms with the fact that
your child is autistic, they have absolutely no right to be guests in your home, let alone friends.