'Tell and be heard'

Violence against individuals with complex communication needs very often remains undisclosed. Unfortunately this unhappy state of events is sustained by various contributing factors such as the fact that the individuals often do not have the means of communication to disclose what happened to them. They find it difficult to access the legal system, have difficulties with legal formalities and also experience problems with giving evidence. A Centre staff project, under the guidance of Prof Juan Bornman, the Director of the Centre for Augmentative and Alternative Communication (CAAC) at the University of Pretoria (UP), has led to the development of multilingual communication boards specifically aimed at helping these individuals to disclose victimization.

Communication boards are devices that typically utilise pictographic symbols, words or phrases, or a combination of all three, which can be displayed either on a cardboard background or on a high-tech device such as an iPad. Individuals using the device can then simply point to the symbol or word that represents what they need to communicate, thereby enabling them to express themselves in a way that is easily understood.

Owing to international migration patterns, multilingual communication is however becoming ever more prominent, which creates many challenges, especially in situations where communication is already compromised. In a country such as South Africa where there are 11 official languages, it often happens that the person making use of a communication board and the communication partner do not share the same language. With this in mind, communication boards were designed in two languages, for example English and isiZulu. The person who relies on the communication board to communicate can then point to the relevant pictographic symbol on the board, and the partner can read the description of the symbol out loud in the communicator’s first language to ensure that the message has been understood.

In light of the above, staff at the CAAC developed ‘You can tell and be heard’ communication boards, which are specifically aimed at helping people with complex communication needs to disclose acts of abuse or violence committed against them. To ensure its relevance, the vocabulary on these boards was socially validated by literate individuals who use augmentative and alternative communication (AAC) methods. Three boards, of which two are symbol based – one intended for children and one for adults – and the other is alphabet based, were designed in English and translated using a blind back-translation process. Following the translation process, the text was transferred to the symbols using a custom developed computer program. The symbol-based boards were then returned to the translators for further consideration.

The problem of crimes committed against people with disabilities and the lack of disclosure of these crimes against them are by no means limited to South Africa; rather, it seems to be an international phenomenon. The potential role of the communication boards developed by Prof Bornman and her team has received international recognition and requests for the boards to be translated into multiple languages have been received from countries all over the world.

Some requests for translation presented the team with unique challenges. Languages such as Arabic and Hebrew that use different writing conventions (from right to left, for example) had an impact on the layout of the symbol-based boards. The team encountered similar challenges with the alphabet-based boards owing to the inclusion of special characters in some languages, for example Å in Swedish and β in German. In cases where a completely different alphabet is used, for instance Chinese and Korean, the team had to make additional adaptations. The majority of translators who have worked on the project to date were members of the International Society for Augmentative and Alternative Communication (ISAAC) who volunteered their time.

The boards have already been translated into 26 languages and will be used on the following continents:

• Africa (Afrikaans, English, isiZulu, isiXhosa, Kiswahili, Sepedi, Tshivenda, Twi, Xitsonga)
• North America (English and French)
• South America (Spanish and Portuguese)
• Australia (English)
• Western Europe (English, French, German, Greek, Italian, Portuguese, Spanish)
• Eastern Europe (Croatian, Polish)
• Scandinavia (Swedish, Finnish)
• Middle East (Arabic, Hebrew)
• India (Hindi, Tamil)
• Asia (Chinese, Korean)
• Madagascar (Malagasy)
• Mauritius (Creole)

The ‘You can tell and be heard’ boards developed at UP have the potential to make a significant contribution to the lives of marginalised individuals across the globe. Prof Bornman and her team at the CAAC are convinced that as the process becomes more streamlined and interest is expressed by other language groups, this ambitious project will continue to go from strength to strength.

The boards developed by the UP team to date are available for download free of charge on www.caac.up.ac.za .

This project is one of three large-scale projects currently pursued by the CAAC. It also forms part of the Faculty of Humanities’ research theme, ‘Enhancing the wellbeing of vulnerable children’. The other projects are a study to identify the legal vocabulary needed by persons with complex communication needs to testify in court by Ms Robyn White (read more about Ms White’s study here) and a study on training relevant service providers (such as police officers) in taking statements from people with significant communication disabilities. 

Researchers

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  Professor Juan Bornman

  Professor Juan Bornman studied at the University of Pretoria (UP) and has been doing research at the institution since 1990, specialising in complex communication needs, severe disability and access to justice.
  
  “Augmentative and alternative communication (AAC) is a niche research area, and UP is the only university in the country that offers it as a postgraduate research area,” she says. “After qualifying as a speech-language pathologist and audiologist, I became Prof Erna Alant’s research assistant when she founded the centre in 1990. As the centre grew, I became Centre Coordinator, then the primary trainer. I discovered my passion, continued with my studies and knew this was the field in which I wanted to work. I was awarded the first PhD in AAC in South Africa.”
  Prof Bornman’s research looks specifically at severe communication disability as a multi-dimensional construct that arises from the interaction between an individual’s health status and their physical, social and attitudinal environment. She believes that in the disability field, the researcher can never be a passive onlooker, and must be committed and passionate. She maintains close contact with various disability organisations and provides direct services to many individuals with severe communication disabilities.
  
  Violence against women and children, and especially the frequency and intensity of violence, is of grave concern to Prof Bornman, especially when considering that women with disability face an even higher risk. “Within the sphere of disability, individuals with little or no speech are particularly vulnerable,” she says. “They are voiceless and invisible in society. Perpetrators see people with communication disabilities as defenceless, unable to call for help and incapable of fighting back.”
  
  The United Nations’ Convention on the Rights of Persons with Disabilities recognises the importance of communication as a basic human right, apart from being an essential human need. AAC addresses this basic human right of individuals who require extensive communication support to function in society. AAC strategies include the use of pictures and graphic symbols displayed on communication boards or in books, manual signs (like the ones used in sign language), tablets and computers with AAC software as well as electronic devices with speech output, similar to the device that Stephen Hawking used. The emphasis should not be on how these individuals communicate, but on the fact that, through the use of AAC devices, they are able to express themselves.
  
  Prof Bornman has spearheaded projects to teach women with severe communication disability about sexuality, and trained and supported police officers in taking statements from these women. Similarly, she has trained lawyers, prosecutors, judges, magistrates and social workers in the use of AAC strategies to allow individuals with communication disabilities to participate in the legal process.
  
  Her collaboration with the National Prosecuting Authority resulted in the successful conviction and sentencing of a perpetrator that had sexually abused a young girl with a severe communication disability. The girl was able to testify in court using an electronic symbol-based communication device with voice output. Following this successful case – and many years of involvement with the legal fraternity – South Africa now has case law regarding the use of AAC in court.
  
  These projects have had far-reaching implications, even internationally; the methodology that Prof Bornman developed with some of her students has been adopted and implemented by research teams at Oldenburg University in Germany. The professor is also collaborating with UP colleagues at the Centre for Human Rights in the Faculty of Law, conducting joint training.
  Using smartphones for healthcare services and research has led to the development of a new interdisciplinary field called mobile health (mHealth). Prof Bornman recently completed a large international study – titled ‘Using mobile health technology to improve communication for children with developmental disorders’ – with Prof MaryAnn Romski of Georgia State University in the US. It was funded by the National Institutes of Health. The project developed a self-guided mHealth intervention app to provide caregivers of children, mostly from rural households, who have developmental disorders (including autism spectrum disorder, cerebral palsy, intellectual disability and other genetic disorders) with strategies to enhance communication during home activities. The app, Nna le Wena (a Setswana phrase that means “me and you”), was developed following input from potential users, such as caregivers and speech-language therapists, to guide the design.
  
  Another recent highlight for Prof Bornman was receiving a research grant from Special Olympics International to coordinate a large-scale research project across South Africa, India, Pakistan, Egypt and the United Arab Emirates. The project, which commenced in July 2021, focuses on the effect of the Special Olympics on the well-being and quality of life of children with intellectual disabilities and their families.
  
  More than 200 million children under the age of five live in low-middle-income countries, and are not fulfilling their developmental potential. Speech-language pathologists play a critical role in addressing communication skills, thereby positively impacting on development, learning and skills development within a human rights paradigm. A deep-rooted appreciation and understanding of the role of the speech-language pathologist as an advocate and enabler for children with communication disabilities and their families, and its impact on the life outcomes of these children, is required.
  
  That is why Prof Bornman embarked on a project titled ‘Empowering speech-language pathologists in Africa: Leadership for advocacy’ with Dr Brenda Louw of East Tennessee State University in the US. It started with research on leadership in healthcare professions to serve as the theoretical underpinning for a series of custom-designed training modules on leadership and advocacy for the speech-language pathologist profession.
  Prof Bornman says her academic role model is Helen Keller who famously said: “The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.” Prof Bornman believes that, like Keller, academics should have deep-rooted curiosity about the world around them. “Academic curiosity – not only about your specific discipline, but towards life in general – is what scholars need if they see their research as an ultra-marathon and not as a sprint,” she says.
  Through her research, the professor hopes to end the silence of crimes against people with disability; this fuels her involvement in a variety of strategies that focus on the individual with a disability, the family, disability service providers, law enforcement, the criminal justice system and public policy.
  
  Prof Bornman says that her research matters because the way that people think about disability has not really changed, despite many 21st-century advances having being made across different disciplines. The human rights of individuals are often still tremendously violated. For example, misunderstanding around the sexuality of women with disability are rife. The dialogue around women with disability needs to become part of mainstream discussions around women’s issues, she says. As long as women with disability remain silent and invisible, they will remain on the fringes of society, which increases their vulnerability.
  
  She encourages school learners or undergraduates who are interested in her field to celebrate each small achievement, to become keen observers and to notice small changes – as “that is what provides energy and passion”. “Stay grounded in hope,” she says, “and find a strong team that shares your vision, commitment and drive. My favourite African saying applies: ‘If you want to walk fast, walk alone. But if you want to walk far, walk together.’ If you want to work in the disability field, you must be in it for the long haul.”
  In her spare time, Prof Bornman enjoys reading, cooking, gardening and having long philosophical debates with friends and family around the fire about almost anything.
  

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  'Tell and be heard'