… obnoxious word ‘SICKLER’ begins descent into dustbin of history
The word WARRIOR has been gaining traction for some years now. It is even used by officers of the NIH in the US, where in San Diego, Southern California, lives the originator of the word and first Sickle Cell Warrior, Tosin Ola-Weissman.
Tosin once went on a frenzied search to relate with folks with SCD for a conversation on the word that riled her so. It was 2005, an era when there were no YouTubers, no bloggers, no apps, no Facebook Groups – a near wasteland era!
A lonely Tosin, then 25 years old, wrote a piece on her rejection of the objectionable word titled, Don’t Call Me A Sickler! ‘That night, Sickle Cell Warrior Inc, was born,’ she was to say later.
The obnoxious S-word was so well-accepted that up till today, despite the unstoppable march of WARRIOR, parents and many living the challenge still refer to themselves as SICKLER. On some online platforms, such as the Sickle Chat (a Ugandan WhatsApp group), when new members refer to their wards as SICKLER, they are quickly corrected and encouraged to use the new epithet.
WARRIOR connotes a soldier on a battlefield – not just the battlefield of life but a microcosmic battlefield both internally and externally in the individual living with SCD.
Although many with SCD readily accepted the novel description of their battle-worn, but still battle-ready life experience, a few resisted the epithet. Ms Osisioma Queen, founder of a vibrant SCD chat group in Nigeria once urged Sickle Cell News to distance itself from the use of the winning word, but bowed to its use after it was evident the term had found its way into the vocabulary of nearly every individual with SCD she met!
Henceforth, everywhere in Sickle Cell News – online, offline and electronic – WARRIOR refers to anyone with the unusual sickling gene and phenomenon.
To paraphrase Peter Tosh, the Jamaican reggae star, No mind your genotype, as long as you have genes that sickle, you are a WARRIOR.
SICKLER and WARRIOR contain 7 letters apiece. For those who believe numbers have significance, the former may stand for IMPERFECTION in the mind of most with SCD, the latter, approaching PERFECTION.
***Interestingly, Tosin Ola-Weissmann turned 40 today, 2 October 2020! Congratulations to the world’s first SCW!!!
REACTION
Warrior is better because it shows the spirit of resilience and endurance. ‘Sickler’ is depressing and shows no hope. We are in this battle to win. Thumbs up Warriors!
Dr. Mrs. Janet Ola, First SCW’s mum
Warrior is a better, simpler word
Stephnine Agbaje, CEO, Marvel Sickle Cell Foundation
Congratulations! I have personally disliked the term ‘SICKLER’ because it’s somehow derogatory.
Dr. Mrs. Bose Ola, Chrisbo Hospital, Ibadan
Replacing the word ‘SICKLER’ with ‘WARRIOR’ is a welcome development … more humane and it honestly depicts what people living with Sickle Cell do, which is ‘fight’ all their lives.
I implore the community to be accommodating of people who don’t catch on early. We must educate them with compassion because for decades SICKLER is the only term they knew. It will take a lot of awareness and patience to make them unlearn that term ‘SICKLER’ and address us as ‘WARRIORS’.
Barrister Uche Kingsley-Onyiloha
I do not support any of the terms, SICKLER or WARRIOR.
When I was much younger I was stigmatized and grew up to be called that name, ‘SICKLER’, as my first name.
As for WARRIOR, I am not fighting any war within myself, with anyone or with anything
Honestly I detest that name WARRIOR. Warrior from which region and which war?!! I’m not a WARRIOR. I’d rather be called a CHAMPION.
Mrs. Taiwo Olapeju, 50 year old SICKLE CELL CHAMPION
No, I never like that word, WARRIOR. What are you fighting – Is it all the time you have crisis or in pain? I’d prefer PERSON LIVING WITH SCD.
Duchess Doris Gbemiloye, CEO, Genotype Foundation
I am not too much for either. I do not agree that individuals with SCD should be labeled especially as SICKLERs. While WARRIOR may be a better term, it is, in my view, synonymous with battle/war.
I recognize that living with SCD is tough and a battle, but no one fights everyday of their life. I believe peers with SCD have lives outside of SCD. As such, I will settle for ‘PEERS WITH SCD’.
Mrs. Lanre Tunji-Ajayi, MSM, former President, GASCDO
When you say you are a WARRIOR, the first thing that comes up in people’s mind is ‘what are you fighting?’ Everyone knows what a SICKLER is; you don’t need to start explaining!’
I will not call myself a WARRIOR. Some people even say they are Winning Warrior. What war are we fighting? Whatever you call yourself, you are never done having crises or complications. So, what are we talking about? We are SICKLERS!
‘I refrain from calling myself a Warrior. Euphemisms do not change the nature of SCD or any other illness condition in any way.
Bode Smith, Bode Smith Sickle Cell Foundation
Neither SICKLER nor WARRIOR is appropriate. You don’t single out people by terminologies that confirm a disease. We’re all patients when we’re down, and answer our names when we’re up and about.
Dr. Chris Otigbuo: Medical Director, St. Claire’s Specialist Clinic, Surulere, Lagos
I love this new word. It is long overdue. ‘WARRIOR’ depicts everything a sickle cell individual has to go through every day. The term recognizes an individual who has great strength.
Timi Edwin, CEO, Crimson Bow Initiative
I implore the community to be accommodating of people who don’t catch on early. We must educate them with compassion because for decades SICKLER is the only term they knew. It will take a lot of awareness and patience to make them unlearn that term ‘SICKLER’ and address us as ‘WARRIORS’.
– Barrister Uchenna Kingsley-Onyiloha
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‘I AM NOT A WARRIOR, I AM A SICKLER!’ – Septuagenarian with sickle cell anaemia
Tosin Ola-Weissmann – the quintessential warrior – first SCW