The Internet restored my Voice before Doctors did

Vweta
Posted July 4, 2016 from United Kingdom
Who am I?
Who Am I?
Who Am I? (1/1)

Who am I? That simple question has plagued me for years. I am still in search of a definitive answer. Because over the years my identity has evolved, then dissolved, revolved, involved and now slowly evolving again.

At 15, I knew who I was – my identity evolving. The records would affirm that I was an Intelligent, athletic, popular, fun loving and outgoing girl. I was even the queen of my school house during our yearly inter-house sports competition, two years consecutively. At that time, 13 years ago, the world was my oyster.

Then at 16, I was clueless – my sense of self, my identity, my self-worth was taken away from me with a surgery that lasted a little over 60 minutes. That act of professional recklessness - paralyzed my vocal cords and dissolved my identity before my very eyes – taking away my ability to speak and breathe without the aid of a tube. In essence, rendering me voiceless, literarily and figuratively. I involved myself in the art of sign language at my lowest. Inspirational writer Laurie Halse Anderson, truthfully said “I wonder how long it would take for anyone to notice if I just stopped talking… When people don't express themselves, they die one piece at a time.”

No one prepared me for life with an acquired disability. In a space of 6 months, I had gone from the popular girl very confident in her abilities to an emotional and psychological wreck – I withdrew from my tertiary studies, I always wore a scarf around her neck, I could no longer play sport, I no longer had an opinion, why, when I couldn’t even say my name. Who was this person? Who am I?

For the next 4 years I set up a support group for other women and girls who have suffered similar fate as me. I used sign language and the internet, I utilised social media to seek out and support those who were survivors of reckless, rampant medical callousness. Though without functioning vocal cords, I spoke strongly with my pen and the stroke of my keyboard. The internet gave me a voice at a time I could not speak -literally.

In the second year of my speechlessness, with the help of my family, I travelled abroad for pioneering treatment. There I met Prof McIntosh – a good man trained in Scotland but practicing in South Africa. He made me realise that the 1 hour or so surgery that took so much (in fact my life) from me was not just totally unnecessary but also negligent. Following two extensive restorative surgeries (2006 & 2008), by him in South Africa, I could utter words again for the 1st time in 4 years. The voice I must tell you was hoarse – but who cares; what mattered was that I could speak again.

Prof McIntosh and I became friends. He carried out 3 more surgeries on me (2006 – 2014) – allowing me to breath on my own again after 10 years – without a tube. I breathe with difficulty and I have to use a humidifier several times to clear my airways. My breathing is noisy – but who cares – I am breathing without a tube stuck down my throat. I was elated. I was jubilant – able to talk and speak, no longer covering and concealing my breathing tube with a scarf – but inside still lingered the question - who am I now? Am I Disabled? Am I not? What kind of identity must evolve from this ordeal?

According to the America Disability Association, I am disabled. This knowledge conferred on me a certain sense of empowerment. I believed, albeit too much that, being disabled would open doors and grant me access to much needed support that I desperately needed.

But that wasn’t the case in Nigeria. When I identify as a disabled person, the disability community view me as a cheat, largely because my disability isn’t visible. They expect to see someone on a wheelchair; yet while I did not fit that stereotype, I still could not compete with non-disabled people because of my impairment; reinforcing my sense of not belonging. I am neither here nor there.

Being in the middle without a sense of belonging, community and identity is lonely and terribly sad. I didn’t choose this space. I was pushed here. No matter how hard I try to push back, to belong, I feel I can’t win.

It took 10 years and 10 surgeries to give me back my voice and ability to breathe on my own again. In many ways, being able to speak and breathe on my own again became synonymous with my identity. Yet, I felt unwelcomed.

No one wanted to hear me speak – they didn’t like my husky voice, they hated my noisy breathing.

Through the Internet I found World Pulse - the only place I felt welcomed. Access to the internet brought me to this large welcoming community I could neither have imagined existed. Through World Pulse, people began to see me as an intelligent human being again. They saw me before my disability. They almost couldn’t reconcile how a girl with this croaky voice could be so vocal online. Many of these people whom I have engaged with online, became disappointed and even showed it when they met me in person and hear me speak for the first time.

And this is what drives me. That support group I set up in 2004 has now grown into an international not for profit organisation known as Project ASHA. ASHA means life and hope in Sanskrit and Swahili. The women and girls I work with, through ASHA, in communities like Sogunro, like me are often lost and forgotten, without a sense of belonging. These women are voiceless. No one cares for their solutions, no one wants to hear their stories, no one wants to listen to their opinions.

These women have become voiceless due to poverty, illiteracy structural inequality and disability; they struggle each day with their sense of self-worth and identity. They would like to engage with their elected officials, they would like to draw the world’s attention to their challenges, they would like the world to see how they use local resources to solve some of the problems in their communities, but they can’t. Not because they don’t want to, but because they don’t fit into a certain group.

Giving these women access to the internet, would, like it did to me, give them a voice. I want to create digital literacy hubs, in communities such as Sogunro, a safe place where women and girls can connect and share their stories with the world. The internet is a leveller and it is only fair that women and girls have unhindered access to it. The UN has now considered access to the internet as a human right.

Eight years on after regaining my voice, I still struggle with my evolving identity. People tell me I can’t do something, either by their words or deeds because of my voice. This brings back sad memories. We live in a society where people in positions of authority would readily select the popular, and able, with the right pitch and intonation, but are unwilling to work with others, who with the right support, are also able to excel and become great orators themselves. People like me.

Even the media would readily highlight the voices and stories of those who are soft sell, and show little consideration for the forgotten voices, those left on the side-lines. I am currently in the US, studying Civic Leadership at the University of Delaware as a Mandela Washington Fellow. The Obama Young African Leaders Initiative (YALI) believed in me. Through my work with ASHA many other disable friendly and fair organisations have believed in me.

This is my biggest platform yet and I would like the world to hear me. According to Zadie Smith “Stop worrying about your identity and concern yourself with the people you care about, ideas that matter to you, beliefs you can stand by, tickets you can run on... The world does not deliver meaning to you. You have to make it meaningful… and decide what you want and need and must do.”

It has been my dream, since being selected, to introduce President Barack Obama, during the Presidential summit in Washington. But I have a feeling I would not; not because I can’t, but because someone may deem me unworthy of such an opportunity due to my granular voice and noisy breathing. I sincerely hope not. I hope this is my delusions of persecution, speaking.

So who am I? I am still the girl from Nigeria, a lot of people don’t want to hear from, but most people would like to read from. And I would like good people everywhere to join my good cause and give a voice to many women and girls like me, through Digital Literacy Hubs, Cafes and Stores.

This story was submitted in response to Share On Any Topic.

Comments 21

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Olaoluwa Abagun
Jul 04, 2016
Jul 04, 2016

What a powerful story Vweta!

You are a super girl who has surmounted all the careless hurdles littered in your way.

I wish you many fulfilling years of being YOU!

Vweta
Jul 04, 2016
Jul 04, 2016

Dear sister Olaoluwa,

I thank you deeply for sparing sometime to read my story.

Writing It was very emotional for me, almost as though I was giving voice to things I'd rather deny.

But I agree, there is a super person in each one of us, all we need is the right support to blossom.

Thank you again sister.

Love. Strength. Courage. Vweta

Miss Spice
Jul 05, 2016
Jul 05, 2016

Dearest Vweta, you have a beautiful voice, physically and digitally. Your purpose and passion is infectious, and your intelligence practically shines in your eyes. Thank you for sharing your story, it's such an inspiration. Blessings.

Vweta
Jul 05, 2016
Jul 05, 2016

Dear Miss Spice,

Thank you for sparing a moment to read this.

Your words are so kind and I must add that sitting with you and other WP sisters during WP visit to Lagos was really what motivated me to share this part of my story.

I thank you for your selfless contribution to our shared vision of birthing a more inclusive world for all.

With Love, Vweta

Aforfresh
Jul 05, 2016
Jul 05, 2016

I was almost moved to tears because it's unimaginable that larger part of the populace still perceive individuals from an outlook that is somewhat superficial.

I sincerely thank everyone who met Vweta, saw beyond her hoarse voice and identified with who she really is; a power house giving a voice to the less privileged girls and women in local communities. With the believe that as we all come together as one unstoppable voice we can have the Nigeria and globe of our dreams.

Vweta
Jul 05, 2016
Jul 05, 2016

Dear Afor,

Permit me to call you by that here. First I must thank you, because you are one of those who always see beyond my weaknesses and disability to who I aspire to you. Your friendship and love means a lot to me

Together, we can all stand strong in birthing the Nigeria- and world of our dreams.

In Solidarity, Vweta

helen.ng
Jul 05, 2016
Jul 05, 2016

Hello Vweta,

Thank you for sharing your experiences with us. It's so nice to hear how you learned and grew from your hardships, and the strength you gained from them. Your voice is indeed powerful, inspiring others such as myself, to consistently encourage ourselves to share our thoughts and ideas. You are a true role model.

With kindest regards,

Helen Ng

Vweta
Jul 06, 2016
Jul 06, 2016

Dear Helen NG,

Thank you for sparing a moment to read my story.

I had hoped to inspire others, just as I am inspired myself by stories shared on World Pulse - knowing this inspired you gives me such great joy.

Thank once more sister.

With Love and Warm Wishes, Vweta

Katalina
Jul 06, 2016
Jul 06, 2016

Dear Helen, So sad to read your story!  You have triumphed over diversity and done so well!  Congratulations!  It is so great that you have done so much for others who suffer like you.  Keep up the good work.  May God bless you.  I grew up in Congo so certainly empathize with the lack of good medical care in Nigeria.  All the Best, Katalina

Vweta
Jul 08, 2016
Jul 08, 2016

Dear Katalina,

Thank you for sparing a moment to read my story.

The state of medical services in developing countries is one of serious concerns increasingly leading to needless deaths and preventable disabilities.

Worse still, many victims are unaware of how their rights have been trampled on.

I dream a world where we can all speak up and speak loud. That world hasn't being birthed yer, but I see it already on its way.

Thank you once more.

Julie Collura
Jul 06, 2016
Jul 06, 2016

Dear Vweta,

Thank you for sharing your powerful story. I am so happy you found your voice on World Pulse. And I, for one, would welcome the opportunity to hear your voice in person. Keep using it.

Best wishes,

Julie

Vweta
Jul 08, 2016
Jul 08, 2016

Dear Julie,

Thank you for reading my story.

I am glad I found World Pulse through the internet thereby finding my voice.

World Pulse did do a video on me and another WP sister (Stacey) whom I met for the first time in South Africa during one of my medical trips. I tried to look for it but haven't been able to find it yet.

I am also in this video https://youtu.be/IF0tekA_Vgc.

Sending love and Warm thoughts your way.

EPAMBA COMFOT TUWA
Jul 06, 2016
Jul 06, 2016

Vweta,you are a hero.you are such an incredible person.you are an inspiration.your story is going to transform the live of many other young girls and women ,who feels they are vulnerable and can't make it in life .Your courage and passion keeps your candle lighting.

Vweta
Jul 08, 2016
Jul 08, 2016

My Very Dear Sister,

I feel the same way about you too.

Hearing your story and seeing your eyes light up everytime you share it is such an inspiration and motivation to me, that I thank God for making our paths cross.

Thank you sister.

Together, we can achieve so much.

Tamarack Verrall
Jul 06, 2016
Jul 06, 2016

Dear Vweta,

I have read and reread your story, and am amazed each time at the number of giant hurdles you have lept over, despite such a complete and immediate change due to that one operation, and the very long 10 years with many other operations. You have faced such ignorance and discrimination, but turned your energy to helping others. How great that your efforts are now supported, recognized, valued and reaching many girls. It is especially moving to realize that the chance of finding WorldPulse was such a turning point. WorldPulse has done so much for so many of us, most specially given us all the chance to meet each other and learn from each other online. I am grateful for learning about your life and your incredible inner strength, and to be in touch with you. I do hope that you get to introduce President Barack Obama. I'm sure he would realize what a gift you are, as well.

With love in sisterhood,

Tam

Vweta
Jul 08, 2016
Jul 08, 2016

Dear Dear Tam,

It is such a pleasure to read from you.

Thank you for reading and rereading my story.

I get really emotional retelling it, often this makes me frustrated, but the feedback i have being receiving from the WP community has helped me so much.

World Pulse has done incredible things to somany if not all of us.

Most of all, the support she provides in helping us speak for ourselves. Without speaking, without sharing, we really cannot heal. Sharing is what helps us connect, learn and heal.

I am forever thankful for this opportunity.

I was very excited to learn you will be at the WP headquaters in Portland this July. I am looking forward to meeting you in person, even though I am on the other side of the US.

Thank you again for your kind words and wishes. I will hold them very dear to my heart.

Okuman16
Jul 08, 2016
Jul 08, 2016

your voice will be heard no matter where i believe you are the light to must of the girls of your type in Africa.

your life story will be shared to my community and they will learn from your experience, Thank you very much for the way you chose to tell your story, it will go far to promote information technology among young girls in must community.

my regards

Vweta
Jul 08, 2016
Jul 08, 2016

Dear Okuman16,

Thank you for reading my story.

I am deeply honoured to hear you will be sharing.my story in your community.

I am thankful to World Pulse for this platform that helps us all connect through technology.

Imagine how much more women and girls could become vocal again with access to it?!

Thank you again.

Bukky Shaba
Jul 08, 2016
Jul 08, 2016

Your story brings me to tears and deeply inspires me. I'm glad for how much you have conquered, how many miles you've run to get here. Oh sister, I've not heard your voice or breathing but I know it sounds perfect because you are giving meaning to lives with it, you are making a way for people because and inspite of it. Thank you for sharing your story. I really hope you are working on a memoir because this is the kind of stories teenage girls and even boys should be exposed to around the world. Your voice usually comes with sound but that's not what gives it power. Thank you for sharing your story. I wish I was close to where you are in the US, would have really loved to meet you. Thank you!

Katalina
Jul 08, 2016
Jul 08, 2016

 Thanks for your reply,  I too dream of a world where everyone has what they need!  Have a good weekend.

Hannah B
Feb 01, 2017
Feb 01, 2017

Dear Vweta,

Your voice is strong, beautiful and inspiring!  We are fortunate that you share it and your story with us.  Your work is so important , and I am happy that World Pulse has assisted you finding a platform to share and connect with other women. I can't wait to hear what you do next - please keep writing!