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“Communication makes me fly high”

26 July 2018

Constance Ntuli

Just because I cannot speak does not mean I do not have anything to say. I am a person who uses a communication device to have my say after losing my voice when I fell sick at a young age.

At the age of 11 years, almost every child dreams of having fun and playing every day. Illness that has a life-long implication is just never part of the plot. For me, at the age of 11, my world took a stand still. It felt like my whole world ended. I lost my voice mysteriously.

All I know is that I bought chips from a school street vendor and ate them as I was on my way going home. As I got home, I told my mother that I had a sore throat. She took me to the doctor who performed the normal doctor’s check-up. Then he injected me and gave me medicine to take.

I took my medicine that evening as well and went to bed. Next morning I woke up, my voice was gone and I could not move my body like a person who just had a stroke. For that whole year, my parents took me to different places to get help to regain my speech, but even today, it is unknown what happened to my voice.

Eventually, someone recommended Kalafong Hospital in Attridgeville. That is where I met a person who made a change in my life. She told us there was hope and there was a way for me to finish school and make a life for myself.

At the same hospital, I met a speech-language therapist who assisted me to regain the use of my legs, left hand side and some sounds to try to get my speech back. When she saw that I was making progress enough to go to school, she enrolled me at a special school called Pretoria School for Children with Cerebral Palsy.

It did not take me long to adjust at the new school and I started doing Grade 5. I remained there until Grade 9, which is the highest grade offered by that school. After that, I was enrolled at another school for children with disabilities called New Hope School, where I completed my matric.

In both schools, I was involved in sports – I was even in the first team. I did catering theory as my career option – because I wanted to be a chef.

After completing my matric, I went to TNC College because I wanted to add a few subjects to my Matric certificate.

For almost a year, I was at home, doing nothing. One day I received t a call from the Centre for Augmentative and Alternative Communication at the University of Pretoria, inviting me to their yearly FOFA empowerment week (fofa is a Sesotho word that means to fly).

During this week they invite young adults from all over the country who have significant communication disabilities to come to Pretoria, and teach speech impaired young adults to effectively use augmentative and alternative communication (AAC) strategies to unlock their potential and to become more than what they think they are able to accomplish. The FOFA week is hosted every year for young adults with little or no functional speech and attend with their personal assistants.

This is where I was empowered to dream and to have goals and opportunities in life. I was introduced to high-tech communication devices that had voice outputs. Before the FOFA week I was only using a pen and paper to communicate or I would sit the entire day and wait for my nieces to come back from school, so that I could send them to the tuck shop.

I had a very low self-esteem and I was scared of other kids laughing at me when I went out on the streets – therefore I never attempted going to the shops on my own. It was very hard to face life before I had a communication device. Without it, I had to go with every decision that someone else made for me, and I could not really argue with anyone because at the end of the day I relied on that person to help me with getting through life.

Little did I know about the Centre for Augmentative and Alternative- a place that was there to help a person like me to use a communication device. I have learnt so much since I have my AAC device – I go everywhere on my own now and I rely on myself to make my own decisions.

Since January 2013, I have been employed at the Centre for AAC and so far, I have been doing a lot of advocacy work and raising awareness about AAC. I get invited as well to other places to give talks about my life as AAC user and the positive feedback I get is inspiring to do even more.

I have also become a mentor to people with and without disability. As part of my advocacy work, I have the opportunity to make the public aware of persons using AAC. Many people do not know that they are people with communication disabilities who are using different AAC techniques and strategies to communicate. I am one of them and it is not easy to spot a person who is using this method of communication, unless you approach a person with difficulties to communicate and then you start a conversation. When I take out my device and try to join an interaction, some people get offended and think that I am rude because they do not understand how the device works.

With my AAC device, I have had the opportunity to travel to many places including Zimbabwe, where I gave my very first international speech. I featured in Drum magazine as an inspirational story and then my story was even told on National television – all this highlighting that I was a conqueror who made it above all odds. In my life, I never dreamt that I would be able to achieve all of this, and fly so high! “

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