The Internet Restored My Voice When Doctors Couldn’t

“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 U.N. now considers a human right.

THIS IS WHO I AM

I am currently in the U.S., 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.

Vweta is a contributor from Nigeria. This piece was originally published on World Pulse. Sign up to get international stories of women leading social change delivered to your inbox every month here.