Living with Sickle Cell Disease-Episode 1; A Case for Disability


Living with sickle cell disease is fraught with challenges. These challenges, sometimes, leak to some very protective areas of our body. Our psychology,to some extent, get altered, our emotions get tested, our hope get bruised, and our beliefs get interrogated.
For some of these challenges, we come out knowing more of ourselves, learning a lot about survival strategies, verifying those who were true to their words when they uttered them and those who bailed out when the going got tough.
But some of the other challenges leave us different: some leave us with a negative perspective to life, some leave us with hatred for nature and some too leave us with some degree of disability or disabilities.
Today I want to speak about the latter: disability. It is a privilege and unmerited favor to have all your body organs and body functionalities operational. It is fun, a sense of pride and a source of joy. But having disability, as a result of a condition, cannot also, deprive those involved of the joy, love, happiness and fun that is around them.
Whatever the disability, people need to know that Person’s with Disability also have their humanity. It’s very intact. We do not cease to be humans just because we are persons with weaknesses or our disability does not subtract from our worth as a person. We have our brains intact, we have our senses active and alert and we, most importantly, have a beating heart with emotions. We care and should be cared for. We love and should be loved. And we empathize and should be empathized with.
Persons with sickle cell who have any disability should not cease living. These disabilities are much like the SOUVENIRS we acquire in this life. They make us unique, in ways that ORDINARY people don’t understand, they give us insight into circumstances that others can easily gloss over and they afford us a perspective solely reserved for very few.
If we have a disability (which I have), that does not mean we are disgusting, that we are non-confident and very timid people. No.
We are smart and insanely brilliant (sometimes), very attentive to detail, very loving and caring, very mature in thought, very competent in our chosen endeavors, very keen on taking initiatives and very excellent at amassing a common effort towards the achievement of a goal.
Myself, though I am a Person with Disability, I don’t let that hinder my vision and mission in this life. These souvenirs should rather propel us. Some people might not be comfortable with our weaknesses, but that is allowed. Not everyone feels the same way. But their discomfort with our weaknesses should not degenerate to behaviors of disrespect to us, condescension or any of those infantile and morally corrupt displays. Let’s not waste precious time with those people. Some will love us, even more, because of our disability. Let’s allocate more time for those special beings.
Some partners leave some personal decisions of who they should settle with just on commentaries offered by friends, some gentleman and ladies leave the decision of who to date just on the lecture tables of their coursemates and in the end, they lose a fine personality, an inspiring character and a loving wife or husband.
Someone, once, said that where the wrinkles at just tell or show where the smiles have been. I will say that where we have our disabilities tell or show where we’ve been hardest hit. But these disabilities in no way diminishes our worth as a people.
So my advice for us is this: to those persons with disability, walk this earth with some refined confidence and some inner chi, its our only card to show to the others that we have our worth intact. And to those who are without it, just remember that such bodily manifestations are telling of the battles we’ve fought and won. We are warriors, so treat us like one.
And just remember that disability is ANYONE’S LOT, ANYTIME!!!

Stay tuned for more episodes of educative articles On Sickle Cell Disease By Torgbui Sipho Michael
Torgbui Sipho Michael is a person with sickle cell disease. He writes, on different subjects across different scope, and shares his time reading, volunteering at Maranatha Community School and offer teaching lessons to many students. He is also a public speaker, motivational speaker and sickle cell advocate. He has written an over 250-page book on the condition of sickle cell disease, awaiting publication.
Contact us through the following details: (+233) (024) 3528250/(+233) (056) 1919581;; facebook: Living With Sickle Cell




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