Overcoming Stigma and Strongly Held Beliefs with Technology: The Case of Sickle Cell Anemia.

When the call went out to talk about how we as women of vision and change are using technology to transform the world, I had to pause and reflect on the amazing stories of visionary and powerful women like Olutosin I have been privileged to follow positively impacting and transforming our world through technology. 

And then, I reflected on my almost 5 years of using technology to demystify sickle cell  and the results that have been achieved.

Five years ago, I timidly started this journey when a simple post exposed just how deep sitted stigma and misconception of sickle cell anemia is with my community. This post on stigma as a social barrier using sickle cell as an example brought to the fore more forcefully, a lot of strongly held beliefs, often completely wrong ones too many, including  those who passed as enlightened individuals held towards people with sickle cell. The debate that ensued, painful as it was reading some of the comments, was the push I needed to start talking.

But how do I talk?  I am hearing impaired and my physical voice is not that strong enough. This is because my hearing impairement kind of affected my speech and as such, in most cases, many struggle to hear me and often, I have to repeat myself.  Sometimes when I think I am loud enough, someone is like what did you say?!

There was this burning desire to talk. To help people understand what sickle cell is all about and in the process, help to demystify the myths and strongly held beliefs which have greatly contributed to the social stigma and discrimination people with sickle cell and their families deal with daily.

How do I talk without a microphone to carry my words far and strong enough for people at the farther ends to hear? People thousands of miles away?

Technology came to the rescue and that strong urge to retell the story of people with sickle cell was finally being fulfilled.

It was not that easy though. Living a relatively safe and sheltered life, I was protected from the bulk of the stigma and it's damaging effects on people living with sickle cell. Nevertheless, out of my cocoon, I had my own brush with stigma and discrimination. Added to the fact that I also have hearing impairment, it was like having a double dose of stigma. On the one hand, due to my SS status, some called me half die and on the other hand, due to my hearing impairment, some call me mumu- a degatory term used to refer to deaf and dumb people in my community.

Due to the above, and despite the fact that I had a very sheltered life, I was still weary to talk about my health issues. You see, the unconscious fear of stigma was very real.

Still, someone had to talk. It was either we tell our stories or we let people carry on with the stigma due to the twisted view of what they understand about those living with sickle cell. 

For some years, a few friends have encouraged me to blog. They said my words had power. But I was reluctant to do so. Maybe I needed a strong WHY to keep the blogging alive once I started no matter what.

This strong desire to change the narrative on sickle cell became my why and with my first blog post, technology became the transformative voice I needed to tell my story.

How loud has that voice and transformation be? So loud so that thousands around the world now have a completely different view about those living with sickle cell. So loud so that in the place of stigma and misconceptions, we get empathy, support and compassion. So loud so much that thousands join my yearly #Breakthesilence colour awareness campaign to add their collective strong voices as they agree to #BeASickleCellVoice. So much so that, though I had just a single desire to educate the community and help demystify sickle cell, the voice could not stop thundering far and wide, bringing a lot of awards and recognitions in it's wake, the latest of which was the prestigious WorldPulse Spirit Award... An award I hold with a lot of pride because it came from this special platform which has continued to be not only a sheltered sisterhood of love but was amongst the earliest to recognize the power of my pen and the need to amplify my voice.

And again, this journey has been one that has not only enriched and transformed my life in more ways than I could count, it has also helped me enrich others. Through the power of technology, I have been able to touch lives in ways I couldn't have imagined and I have gained an amazing tribe of brothers and sisters scattered around the globe who are ever ready to support my vision. This support and believe in my vision was renforced last month when making an SOS appeal for the first time publicly to support a sister I am yet to meet who reached out to me about being in dire need to pay  her sickle cell warrior daughter's exam fee. We launched an open appeal with her permission and sisters around the world rallied and raised the money which not only paid the fees but also enabled her to start a small business. Yes, that was an example of a transformative power of technology for the greater good.

My experience has shown me that as the world gets more and more digital, technology is becoming a powerful tool for positive transformations and as the world stands still with the Covid 19 pandemic, women need not stand still with the world. Now is the time to harness what ever technological device we have to continue to transform and impact lives positively.