There is an African saying that until lions learn to speak, we will only hear the story from the hunter’s perspective. The same goes for the story of people with a disability.
Most of the people who died after being transferred from Life Healthcare Esidimeni to various NGOs across Gauteng due to cost-cutting measures, had limited communication skills.
This added greatly to their vulnerability.
Within the sphere of disability, these people are the most vulnerable, who cannot advocate on their own behalf. They are the silent, often invisible members of society who have no way of fending for themselves or exposing their perpetrators. They had no way of speaking out about their neglect and abuse, but their emaciated bodies, covered in bruises, scabs and scars told a different story. How long can we continue only listening to the hunter’s story?
Nothing creates greater vulnerability that not having a voice. Without a voice, you have no opinion.
Without opinion you have no choice. Without choice you are regarded by others as “invisible” and that effectively means that you are not considered as having any rights. Yet, human rights refer to those rights that are considered universal to humanity, regardless of ethnicity, gender, ability or any other consideration. These rights should be afforded to all individuals purely on the basis of the fact that they are human. We have a strong tradition in human rights on the continent - the African Charter on Human and People’s rights dates back to 1981.
In 2006, the UN’s Convention on the Rights of Persons with Disabilities, a ground breaking convention, was published. It is hailed as a modern, innovative human rights treaty. South Africa already signed and ratified the convention in 2007.
At its 10th anniversary celebration in Addis Ababa, Ethiopia, the successes on the continent in as far as service delivery to persons with disability were shared.
Maria Soledad Cisternas Reyes, chairperson of the committee on the convention, said it had broadened the recognition of the importance of the rights of persons with disability. But did anything really change for the more than 100 South Africans who died?
Article 21 of the convention deals with freedom of expression and opinion and access to information. In other words, it aims to provide a voice. People with disabilities have the right to express themselves, including the freedom to give and receive information and ideas through all forms of communication, including sign language , Braille and augmentative and alternative communication (AAC).
AAC includes all forms of communication (other than oral speech) that are used to express needs, wants, thoughts and ideas. These could include unaided forms of communication (where one relies only on your body to communicate) which would include facial expressions, finger spelling, sign language (such as South African Sign Language) as well as natural signs (such as a wave of making a “stop sign” with an outstretched palm) and head nodding to indicate “yes” or “no”.
AAC could also include unaided forms of communication (where one requires something in addition to your own body). This could include pointing to objects or to graphic symbols displayed on communication boards, and electronic devices with speech output to express yourself - similar to the device that Stephen Hawking uses.
The way in which a person can point to these devices or communication boards vary: sometimes a hand can be used, or the eyes (an eye gaze system), or an infra-red light mounted on the person's head. It is important to note that people who use AAC will not stop using speech or will not fail to develop speech if they are able to do so. The AAC aids and devices are used to enhance their communication.
Who can benefit from using AAC? It is built on the premise that everyone can and does communicate - and that includes people with severe disabilities. All the more than 100 individuals who died unnecessarily would have been candidates.
Both children and adults can benefit, both people who are born with a disability (children with cerebral palsy, children with intellectual disability, and children with autism spectrum disorder) and those who acquire it (following a near-drowning incident, after a motor vehicle accident and after a stroke).
The causes are thus diverse, but what all these individuals have in common is the fact that they cannot rely on spoken language to make their needs known.
AAC also attempts to address some common myths around those who cannot speak: if a person cannot use spoken language it doesn’t mean that he or she doesn’t want to interact. Neither does it mean that the person has nothing to contribute. All humans have the capacity to communicate - although not necessarily in the same way and using the same forms of communication. If a person cannot speak it also does not mean that the person doesn’t understand anything and that he or she does not have the potential to learn. These individuals often use subtle and idiosyncratic ways of communication and it is up us to acknowledge that and treat them as humans with rights.
Not being able to communicate marginalises people with significant disability and increases their vulnerability. They often remain silent and dependent on others. This needn’t be the case. No more people need to pay with their lives. We all have a role to play in empowering these neglected individuals and their families by acknowledging them as human beings, by recognising their human rights and by affording them the opportunity to "make their voice heard".
For too long we have not heard the lion’s voice, only that of the hunter. Remember: If a person can’t talk, it doesn’t mean that he or she has nothing to say. May their souls now be free, and may they rest in peace.
* Professor Juan Bornman is from the Centre for Augmentative and Alternative Communication (www.caac.up.ac.za), University of Pretoria.
** The views expressed here are not necessarily those of Independent Media.