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

ARREY- ECHI
Posted March 30, 2020 from Cameroon
Supporting A Sister Iya to wear green for Kidney Awareness during her #GreenCampaign.
Supporting A Sister Iya to wear green for Kidney Awareness during her #GreenCampaign. (1/1)

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.

This story was submitted in response to #SheTransformsTech.

Comments 14

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Jill Langhus
Mar 30
Mar 30

Hello Arrey Love,

How are you doing, love? So eloquently and beautifully written, as always:-) You're such a brave and beautiful soul:-) Thanks for sharing some of your brave, beautiful soul. You deserved the Spirit Award and I'm glad it meant so much to you, too:-)

Not sure if it helps, but people don't always hear me either. It can be very demoralizing and humiliating but I'm glad you keep getting up, and keep telling your story... it's an important one and it's clearly your mission, too!

Hope you and your family stay safe and well, dear.

XX

ARREY- ECHI
Mar 30
Mar 30

Sis Jill,
Thank you so much for those ever present and encouraging words. I am doing ok, keeping the positive vibes on despite the challenging times.
Hope you are doing ok too.

Yes, the story needs to be told. It is good to know that sometimes not everyone hears you. Actually, I don't find it embarrassing. But sometimes, people's attitude towards that can be discouraging.

We keep speaking and using our technological voices to make a transformative difference.
Thank you for always reading. Yes, the Spirit award means a lot to me.
With love

Jill Langhus
Apr 01
Apr 01

Hello Love,

You're very welcome. I'm very glad to hear it!

I'm doing well, thank you!

I'm glad you don't find it embarrassing. It shouldn't be. I see:-(

XX

Dawn Arteaga
Mar 30
Mar 30

Thank you for sharing your story here Arrey-Echi! Your voice is SO powerful and I'm grateful to know you.

ARREY- ECHI
Mar 31
Mar 31

Dear Dawn,
Thank you for reading and for leaving this encouraging comment. It is a privilege to know and walk this path with you.

Melissa Kelly
Mar 30
Mar 30

Hi Arrey-Echi,
I really enjoyed your story, especially where you write, "For some years, a few friends have encouraged to blog. They said my words had power". I thought it was great to see others encouraging you to use your voice and is also a nice reminder to encourage others around us. Continue to spread awareness around sickle cell anemia and hearing impairments. Thanks for being an inspiration!

ARREY- ECHI
Mar 31
Mar 31

Hello Melissa,
Thank you so much for these kind words and for signaling that part out. Yes indeed, sometimes, others see things in us we may not readily grasp and push us forward. I am happy some of my friends recognized the power of my pen back then and pushed me and I hope this inspires someone too.
Thank you. I sure will keep doing so.
With love

Marie Abanga
Mar 31
Mar 31

Dear Arrey,

Thanks for taking that bold step and for sharing it with us. I am witness to how much you treasure World Pulse. Had you not displayed one of those badges on your cupboard, I may not have had a reminded I had bookmarked World Pulse to check it out 5 years prior. I love the power and loudness technology has brought to us women and I hope may more embrace it too.
Waiting for your next campaign
Light and love
Marie

ARREY- ECHI
Mar 31
Mar 31

Dear Marie,
Thank you so much soul sis for this. Yes oh, that WP plague is a treasured treasure. And I am always so glad to hear how it played a pivotal role in your becoming a world pulser.

Thank you for the love and support.
Slowly but surely counting down to the next campaign. With the way things are going globally, it may surely be more technologically inclined this year as well.

Love and hugs.

Hello, sister Arrey,

What another powerful and inspiring post from you. I am so happy that Technology helped you raise awareness and launch campaigns on Sickle Cell, proving that sickness nor disability is not a hindrance to create and impact.

Please keep it up, dear! Your voice needs to be heard louder than ever. Please stay safe, too.

ARREY- ECHI
Mar 31
Mar 31

Hello Sis Karen,
Thank you so much. Yes, you are right. Our situations and cricumstances shouldn't be hindrances to us reaching our full potential. Disability certainly is not inability and with technology, we sure can scale through that.
Thank you for always cheering.

Yes, I am doing my best to keep safe, thank you. Hope you are too.

Thelma obani 2020
Mar 31
Mar 31

Interesting.. your voice will be heard in the world...keep winning

ARREY- ECHI
Mar 31
Mar 31

Dear Thelma,
Thank you very much, I sure will keep winning. I hope you are well and maybe should I say welcome to the pulse?
With love

Thelma obani 2020
Apr 05
Apr 05

Thanks Ma.. stay safe