Professor Juan Bornman
Imagine this: one morning you wake up, open your eyes and as you attempt to stretch out, you realise that you can’t move. You try to call for attention, but no sounds come out of your mouth. You desperately want to be noticed and draw attention to this new body that suddenly does not want to move or to speak — but how do you do that without a voice? How do you share ideas, opinions and feelings without speech? How can you ask for help without words? How can you protect yourself and ask others to stop what they are doing if you are silent?
This is the reality that faces approximately one million South Africans daily, who are part of up to 2% of people with significant communication disabilities worldwide. For some of them, the loss of speech was almost immediate: after a motor vehicle accident or a stroke. For some it happened gradually following the diagnosis of a degenerative disease such as motor neuron disease, Parkinson’s, or Alzheimer’s disease. Some never developed speech, such as children with cerebral palsy and some with autism. There are individuals who can speak a few words, but who cannot rely on speech to meet all their communication needs.
These are the people who cannot use speech to choose what they want to eat, or not to eat. They have no say in what they want to wear or how they want their hair to be fixed. Their preferences of what they want to do and in what activities they want to be involved are not considered. They are often the invisible and silent members in our communities. The ones who are overlooked. They are the ones who belong to the “other” group and are not part of “our” group — not part of “us”. We tend to dehumanise others who look different, and who talk differently. We treat them like objects. No human being deserves that.
As we celebrate Human Rights Day, let’s remember that communication is also a human right. Perhaps it is one of our most fundamental rights, as communication unlocks a whole bouquet of other rights: we need language and communication to learn, and we need education to find employment. We need communication to access basic healthcare and ensure social justice. We need communication to show that we are contributing members of society who should be treated with dignity and respect. Communication makes us human. It ensures belonging. It helps others to discover our personalities. It showcases our sense of humour. It is how we express our fears and feelings. Therefore, communication is not only central to how we enjoy many of our human rights — it is also the medium through which we claim or assert our rights.
Not being able to speak does not mean that a person has nothing to say. As part of the speaking group, the group who can rely on spoken language to meet our basic needs, we need to afford others the exact same human rights. How? Look for any and all signs of interaction, no matter how subtle or slight. Look for facial expressions that might indicate happiness, surprise, anger, sadness, fear and disgust. Scrutinise body language and observe head nodding or shaking, pointing with the hands or with the eyes. Treat everyone as a potential communicator and show that you are actively listening and expecting a reaction. It is not important how a person communicates, but rather that he or she communicates.
Perhaps this is what Daniel Webster, one of the most prominent US statesmen of the 1800s, meant when he so famously said: “If all my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest.”
Professor Juan Bornman works at the Centre for Augmentative and Alternative Communication at the University of Pretoria. She was also President of the International Society for Augmentative and Alternative Communication from 2021-2022.