This story brought to light how privileged I am. Most of us can change the TV channel, recount a story to friends or order a meal at a restaurant without much difficulty. The ability to communicate what we want, or to simply change what we don’t want, allows us to navigate our way through our daily activities and through life.
I struggle to imagine not being able to communicate or do for myself what I choose, but I had the opportunity to meet two incredible boys who allowed to me to get a glimpse into what that world would look like. These two young boys suffer from severe physical disabilities and are confined to wheelchairs. On top of that, they do not have voices.
Now let that combination sink in for a moment. So, not only can they not do for themselves, they also cannot communicate what they need or want. Imagine not being able to tell someone that you’re cold, that you need to use the bathroom or that the physiotherapist is hurting you? You are helpless and vulnerable.
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These individuals are easy targets for abuse because they are silent and cannot even defend themselves. They are completely cognitive, but their bodies have betrayed them, and they are stuck within a physical prison where they are at the mercy of those around them.
I met Nasi and Alexander at New Hope, a comprehensive special needs school in Pretoria. Both have a great sense of humour, are bright, gregarious, and have bubbly personalities; typical of any boy child. The difference is that, for me to be able to communicate with them, we had to use Augmentative and Alternative Communication (AAC) devices.
“This device is clearly a lifeline for Nasi. It allows him to interact with the world. It is how he has been able to go to school and participate meaningfully in class.”
AAC devices assist those who cannot speak or those who struggle to speak. Perhaps the most well-known AAC user was Stephen Hawking, who lost his ability to speak because he suffered from motor neuron disease.
A device that assists with communication could be as simple as a tablet, or it could be a multi-screen console, depending on the user’s abilities and needs. Nasi has dyskinetic cerebral palsy, which means he has no control over his body movements. To communicate, he uses an eye gaze device that has been calibrated specifically for him.
The way it works is that he simply has to look at an object, word, letter or pre-programmed phrase on the screen long enough, the machine then tracks his eye movements and generates speech from his selection. This device is clearly a lifeline for Nasi. It allows him to interact with the world. It is how he has been able to go to school and participate meaningfully in class.
The device that Alexander uses is slightly different in that, unlike Nasi, he does have some control of one hand, and so is able to use a touch screen that is similarly pre-programmed with phrases that allows him to communicate.
It was an absolute delight to chat with both of them and witness how, through the use of these devices, they could transcend the barrier of communication.
Nasi and Alexander have never been able to speak, and these electronic sounding voices that they’ve had for about a year now have meant a communication breakthrough for them.
It was an absolute delight to chat with both of them and witness how, through the use of these devices, they could transcend this barrier of communication.
The joy and positivity I received from these two young boys about their AAC devices was in complete contrast to the other end of the spectrum of AAC users – adults who are in the process of losing their voice. Being diagnosed with a degenerative neurological disease inevitably means that at some point you will lose your voice.
This is devastating, as it means once independent, articulate individuals will slowly regress into a silent prison where they are completely dependent on another person. There is also the obvious comparison one will make between the new robotic tones of the AAC to the voice you once had. But even these adults were grateful for what the AAC could do to preserve communication.
The feeling is that the new voice will be inadequate, and users won’t feel represented well by it. Increased awareness around the voiceless and how to communicate with them needs to happen.
Unique challenges to South Africans is that AAC devices are not yet available in most of our official languages, but research is continuing on how this can be available to those who do not use English or Afrikaans as home languages.
I was left optimistic that there will be many more Alexanders and Nasis that will experience the freedom of communication with this life-changing technology.
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