A (now outdated) sickle cell prognosis is no excuse for ableism

Everyone's life is equally valid, regardless of life expectancy

Mary Shaniqua avatar

by Mary Shaniqua |

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Sometimes when we patients talk about the stigmas associated with sickle cell disease, I don’t think people fully grasp what we mean.

I’ve written about some of the negative connotations about sickle cell patients expressed by people in the healthcare sector and society in general. An overarching theme seems to emerge in which we’re condemned to adverse outcomes. It makes my blood boil.

When I was a child, someone made an off-the-cuff remark to my mother saying that she shouldn’t invest too much in my well-being and education. My mom told me later that when I was born, doctors said the life expectancy for children with sickle cell in the U.K. was about 10 years old. (My family is from Nigeria, but my parents decided to relocate to the U.K. following my diagnosis.)

Given this statistic, and considering local cultural beliefs in Nigeria and elsewhere about sickle cell patients, you might understand what would motivate someone to say something so horrific to a mother.

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Preventive measures should be a part of every sickle cell care plan

An illness doesn’t negate our worth

I’m from the Yoruba tribe in Nigeria, and our language has a slur often associated with sickle cell patients: “abiku,” which loosely translates to “predestined for death.” Yes, you read that correctly. When it’s been normalized as a way for people to refer to me, and others like me, it’s no surprise that someone would be so brazen as to tell my mum not to bother spending her energy on me as a child. According to this person, the chances were slim that I’d live long enough for it to be worth the effort. Isn’t that crazy?

In reality, I’ve lived decades past that initial prediction of life expectancy. I was a studious child and excelled academically, and I’ve been fortunate to have an accomplished career.

It infuriates me when people are so disrespectful. First, everyone’s life is equally valid, regardless of prognosis. A medical condition is not a license to write someone off, for any reason. Millions of people around the world have chronic illnesses and varying disabilities, and they all improve the world in their own ways. An illness doesn’t negate our worth.

I’m a Christian, so I believe that all people are created equal in the image of God. All life is sacred, regardless of whether one is able-bodied.

I’d encourage giving everyone access to opportunities. Some people with disabilities may require adjustments in the workplace, school, or elsewhere to facilitate them, but they shouldn’t go without. Imagine if my parents had listened to the advice that person gave them about me.

Would I have obtained a master’s degree and had a successful career? Would I have become a disability advocate and speaker? Likely not. I’ve needed some accommodations along the way, yet I’m also an example of what can be achieved.

I, and others like me, are amazing people with vast potential, capabilities, and intellect. Stop placing barriers to our success because of preconceived notions about how people with chronic illnesses and disabilities are somehow “inferior.” You’ll see just how much we can achieve and contribute to society.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.


Eugenia R. Crawford avatar

Eugenia R. Crawford

Thank you, thank you, Shaniqua🙏🏽

My four year old Grandson has SCD and it makes me so sad that he has SCD but he holds my heart in his hands as I will do whatever
is necessary because he’s a very bright, affectionate, humorous little guy who makes my life soooooo happy.

Thank you for sharing your story and calling out those who are so negative rather than choose to educate themselves on any subject especially in the field of medicine.

Please keep the articles coming.

I may not know you but I’m so proud to know you are living your life.

May your journey continue for years to come.

God Bless you,

USA , across the pond🌈

Xanayia Mckinney avatar

Xanayia Mckinney

Hi is there anything you know about how to advocate for social security? Mainly surrounding the topics of: sickle cell being bad enough to be considered worthy of assistance yet still not good enough to hold down a job consistently, and being old enough to be considered for assistance despite having sickle cell since birth and being home bound because of it. Also any topics on health care workers pride getting in the way of actually helping the patients assigned to them. I can only advocate for so much before getting burned out and I feel you can articulate these experiences better than I can.

Chantal Gaston avatar

Chantal Gaston

I also have a child with sickle cell disease and I am wondering what the care is like in the UK. Have you heard about the new gene therapy treatments yet?

Carol St.John avatar

Carol St.John

Thanks for sharing. As a mother of two adult children with SC Anemia. I can relate. God has the final say. Both have done very well academically, have graduated college and working in there respective fields. Do not limit your children because of a health diagnosis.

Seulear Hope-Ross avatar

Seulear Hope-Ross

Love that, and I know exactly what you're saying ... I work in the Healthcare system the stigma is real, where else can we go when we're in a crisis? Then they talk all kinda stuff about you but I don't bother with them because I know I play an important role in society.

Mary B Williams avatar

Mary B Williams

Right, God has the final word. I am 661/2...05/25/1957,I am blessed to still be here! And I have Sickle Cell and a grown Son.


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