Featured Storyteller

NIGERIA: The Internet Restored My Voice When Doctors Couldn’t

Vweta
Posted July 7, 2016 from United Kingdom

A botched surgery took away Vweta’s ability to speak. It didn’t take away her voice.

“With my pen and the stroke of my keyboard, I spoke strongly—even without functioning vocal cords.

Who am I? That simple question has plagued me for years. At 15, I knew who I was—I was the queen of my school during our annual sports competition. I was an intelligent, popular, fun-loving, and outgoing girl.

All that changed when I was 16. A surgery that lasted just a little over 60 minutes took away my sense of self, my identity, and my self-worth. The surgery was supposed to cure difficulty breathing from severe allergies. Instead, an act of professional recklessness paralyzed my vocal cords and took away my ability to speak and breathe without the aid of a tube. I was literally and figuratively voiceless. When I think of this point in my life, I think of a quote by writer Laurie Halse Anderson: “When people don't express themselves, they die one piece at a time.”

No one prepared me for life with an acquired disability. In the space of six months, I became an emotional and psychological wreck. I withdrew from my studies. I wore a scarf around my neck to hide my breathing tube. I could no longer play sports. I no longer had an opinion: What was the point if I couldn’t even say my name? Who was this person I had become?

Becoming Myself Again

When I was at my lowest, I began learning the art of sign language. I used the Internet and social media to seek out other survivors of reckless medical callousness. Over the next four years I built a support group. With my pen and the stroke of my keyboard, I spoke strongly—even without functioning vocal cords. The Internet gave me my voice back.

In the second year of my speechlessness, my family helped me travel to South Africa for a pioneering treatment. The doctor there helped me realize that the surgery that took so much of my life from me was not just totally unnecessary, but also negligent. In 2008, after two extensive restorative surgeries, I uttered words for the first time in four years. My voice was hoarse, but who cares? What mattered was that I could speak again.

In 2014, after three more surgeries, I took a breath without a tube for the first time in ten years. I still breathe with difficulty and I have to use a humidifier several times to clear my airways. My breathing is noisy, but I am breathing without a tube stuck down my throat.

Disabled but Invisible

The successful surgeries brought a confusing mix of emotions. I was elated. I was jubilant. I could talk and speak, no longer concealing my breathing tube with a scarf. But questions still lingered: Who am I now? Am I still disabled? What kind of identity must evolve from this ordeal?

According to the Americans with Disabilities Act, I am disabled. This knowledge gave me confidence at first that I could access the support that I still desperately need.

In Nigeria, however, I didn’t find that support. When I identify as a disabled person, the disability community views me as a cheat because my disability isn’t visible. While I am not in a wheelchair and don’t fit the stereotype of a disabled person, my speech impairment and breathing difficulty prevent me from competing with non-disabled people.

After 10 years and 10 surgeries, I was still lonely and stuck in an in between space without a sense of belonging, community, and identity—even though I had my voice and ability to breathe on my own again.

No one wanted to hear me speak. They didn’t like my husky voice. They hated my noisy breathing. No matter how hard I tried to belong, I felt I couldn’t win.

Finding My Voice Online

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 never 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.

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

Because of 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 will give them a voice, just as it gave me my voice. I want to create digital literacy hubs in rural communities: safe places where women and girls can connect and share their stories with the world. The Internet is a leveler, and it is only fair that women and girls have unhindered access to this resource that the UN now considers a human right.

This Is Who I Am

I am currently in the US, studying Civic Leadership at the University of Delaware as a Mandela Washington Fellow. The Young African Leaders Initiative (YALI) believed in me. This is my biggest platform yet, and I would like the world to hear me.

It has been my dream since being selected to introduce President Barack Obama during the fellowship's Presidential Summit in Washington. But I have a fear that someone would deem me unworthy of such an opportunity due to my granular voice and noisy breathing.

Eight years after regaining my voice, I still struggle with my evolving identity. We live in a society where people in positions of authority ignore people who don’t have the right pitch and intonation. They are unwilling to work with people like me, although I can excel and even be a great orator with the right support.

So who am I? I am still the girl from Nigeria who a lot of people don’t want to hear from, but who many people all over the world like to read from. I am a person with the vision to imagine a future where every woman has the agency to lead her life and live her truth. Every time I close my eyes, I dream this world: I see women and girls like me connecting through digital literacy hubs, cafes, and stores.

I consciously work towards this world every moment I am awake—and I would like good people everywhere to join my cause.

 

 

Comments 18

Log in or register to post comments
Sally maforchi Mboumien
Jul 08, 2016
Jul 08, 2016

Every time I close my eyes, I dream this world: I see women and girls like me connecting through digital literacy hubs, cafes, and stores.

I consciously work towards this world every moment I am awake—and I would like good people everywhere to join my cause.

Vweta dear from the lines above you have mapped out a part that leads to everyone, anywhere and anytime to get your voice loud and clear. keep going sis!!!!!

Vweta
Jul 08, 2016
Jul 08, 2016

Dear Sister Masalien's,

Thank you very much for reading my story.

I am very thankful for the support I am receiving from you all my dear sisters towards making my abiding commitment a reality.

mansibajpai1987
Jul 09, 2016
Jul 09, 2016

Very very proud of you my dear friend. Please visit India some day.

Regards, 

Mansi Bajpai

Vweta
Jul 13, 2016
Jul 13, 2016

Thank you dear Mansi.

I am honoured to know you on a platform such as WP.

stella Ndugire- Mbugua
Jul 10, 2016
Jul 10, 2016

A moving story Vweta! You are a strong woman and a great example to many.

Thank you for sharing your journey with the world.

Vweta
Jul 13, 2016
Jul 13, 2016

Dear Stella,

Thank you for reading my story, and for your kind words.

I found my voice and inner strength through the support of others reaching back to support me.

This moves me to do thesame, anyway i can, and at the moment - by sharing my story with the world. It is my sincere wish that it keeps inspiring everyone.

ARREY - ECHI
Jul 11, 2016
Jul 11, 2016

Dear Vweta, Thank you for sharing your very inspiring story. I can strongly relate with what you said about the internet helping you find your voice. Keep raising your voice by empowering many more women via the net.

I can very well relate to people not seeing you as disabled enough because you are not in a wheel chair. Keep empowering and keep discovering who you are.

 

Vweta
Jul 13, 2016
Jul 13, 2016

Dear Arrey,

I thank you for your feedback.

Access to the Internet means more people can engage with the world from the comfort of their communities and homes. Imagine how much development communities would witness if it was harnessed to its fullest potential?

Celine
Jul 12, 2016
Jul 12, 2016

Thank you my dearest sister Vweta for this inspiring piece.

The most important thing about you is that you believe in yourself and that belief has shaped your aspirations and motivations. Keep going honey and we will keep on celebrating you.

Cheers

Celine 

Vweta
Jul 13, 2016
Jul 13, 2016

Dear Sister Celine,

It is always a pleasure to read from you.

I must say I am very inspired and motivated by your tenacity and dedication.

This has helped me stayed the course even in trying times.

Thank you sister.

Anne Dupont
Jul 13, 2016
Jul 13, 2016

Dear Vweta,

This is beautiful!  You're so right--the Internet is a great leveler and I love how you have used it to your advantage and to help others. Your voice is courageous, strong and impactful!  Simply by sharing this story, you make us think and reflect about how we can show up differently in the world. Thank you for sharing your story and and inspiring us to create that same beautiful world you work toward every day.

Warm regards,

Anne 

Vweta
Jul 13, 2016
Jul 13, 2016

Dear Anne,

Thank you for reading my story and for your feedback.

Indeed, the internet has played a key role in my personal and leadership journey.

Even now, I find it to be a very inclusive tool.

It is my wish that more women and girls are able to harness the powers of this important resource, as I have.

Thank you once more.

bookorla
Jul 13, 2016
Jul 13, 2016

I must commend your zeal and your passion is contagious. I so much love the fact that you didnt stop believing in the greatness you possess Sis Vweta. Congratulations for becoming a YALI Fellow. Thanks for giving hope, love, warmth to women,girls that people don't necessarily want to pay attention to sis.

Kingsley Obom-Egbulem
Jul 16, 2016
Jul 16, 2016

This is truly inspiring and challenging Vweta. Nothing hurts as much as losing your identity. And nothing is as gratifying and fulfilling as discovering who you are or like in your own case rediscovering who you are. 

Congrats for sharing.

Kingsley

Michele Paynter
Jul 17, 2016
Jul 17, 2016

Dear Courageous Vweta,

As I read your story, I could not prevent the tears welling up in my eyes. Had I been close to you, I would have offered you a HUG of solidarity and that of sisterhood. You never allowed "invisibility" to be a force in your life. You did not harbour ill feelings against a doctor's ignorance and negligence to overwhelm your life. You are pursuing higher education, and have created and organization to assist young girls and women to maintain their voice, whatever their station in life.

I am a woman born with a disability. For many, many years, I was extremely sensitive to others' comments and labels of me. I shed many tears of self-pity, angst, and frustration, not understanding how I could stand tall, with womanly pride, knowing that there was nothing wrong with me! Though I had use of my vocal chords, my mind, my soul was deflated as a worthy human being. God never gave up on me, my sister, and it was late in life that I retrieved my inner voice of quiet determination, confidence, and self-love.

Vweta, I applaud you as a sister, making a positive difference for other women and girls who may have disabilities! Thank you so very much. Please write me if you want.

In Power,  In Sisterhood,

Imanigurl01

MAUREEN BII
Jul 25, 2016
Jul 25, 2016

Vweta, you're truly a champion. You inspire me everyday and when I face difficult situation, i know how to fight back.Ever since i got to know you,i knew i had met someone daring to be strong amid diffuculties. You are the voice of the voiceless and can't stop admiring your strength. Keep up

ozabas
Aug 24, 2016
Aug 24, 2016

Dear Vweta

Your story is so touching! It is very pathetic how some of our health practioners give poor and negligence services, not realizing what a little mistake in the course of discharging their duty could cost.

It's very unfortunate you had to go through all that. All the same, I so much admire your courage, determinations and vision. More so, I believe your relentless efforts shall make you achieve beyond what you envisage. You are a success already, and the sky is not even your limit.

Best wishes

Ozabas

Jumoke Awe
Aug 24, 2016
Aug 24, 2016

Inspiring !