My Story in My Voice

As a young girl living with a disability, life wasn't easy, people were eager to exploit my vulnerabilities – sexually and otherwise.

This is my story…

In 2003, I developed difficulty breathing which made simple tasks like playing with my friends almost impossible, I was 15 and had just finished secondary school.

I thought nothing could be worse than being unable to play sport and go to the university until my father was assassinated in 2004.

Later that year, I had my first surgery - an emergency tracheotomy which made me breathe better though I was unable to speak afterward.

Over the period of 3 years, I had 5 excisions and biopsies in my upper larynx. Each surgery held promises – I would speak afterward; I would be able to go to school and I would be decannulated. Sadly, each of those promises went unfulfilled.

Eventually, I was referred to South Africa in 2006 where I was diagnosed with total upper laryngeal stenosis due to scar tissue which had formed because of the previous surgeries I had; my vocal cords were slightly paralyzed. This left me utterly devastated.

In 2007 I decided to do something with my life; I wanted to be able to meet and support other young women who had had similar surgeries. I wanted to help them through the 5 stages of grief in any way I could.

We met once a week and exchanged notes (most of us couldn't speak). We shared our joys and sorrows.

I also enrolled in the Diploma in Social Work programme, which was tough – classmates asked me questions because they wanted to see me try and when I took the bait they would laugh hard at me, I was an easy target for rape because I could not speak audibly or shout. I often drew strength from the women I worked with, they kept me determined and when I graduated with Distinction in 2009, it was our victory!

I heard myself speak for the 1st time in 4 years after my 2nd surgery in South Africa. My first words were: “this is not my voice,” and it was true, no one had ever said what I needed to say.

Two surgeries in South Africa (2006, 2008) and 1 surgery in India (2012) left me breathing and speaking better with a Montgomery tube. I am scheduled for another surgery this year but my health condition is the least of my concerns. Women like me, living with disabilities are being abused physically, emotionally, sexually, psychologically everyday by those who claim to love us, some of us think they are doing us a favor by being with us so we let them get away with it, this is my foremost concern, this has to stop!

Since 2007 till date, I have worked voluntarily with women living with disabilities in my small way.

It is my desire to do more that has led me to you; to World Pulse.

And as our hearts beat as one and our voices rise in unison I know I will never walk alone.