Giving a voice to persons with disabilities

Researchers at the University of Pretoria’s Centre for Augmentative and Alternative Communication (CAAC) are working to stop the abuse of the human rights of persons with disabilities. The researchers want to help victims with Complex Communication Needs (CCN) access justice and give them the ability to communicate through various means.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) reaffirms the basic human rights and dignity of persons with disabilities and advocates for the full participation of persons with disabilities in all aspects of life. However, persons with disabilities face numerous difficulties and according to a US study are four to ten times more likely to be victims of crime. The issue is further exacerbated in persons with Complex Communication Needs (CCN), because they do not have the ability to easily communicate that they were a victim of crime, exploitation or sexual abuse.

More than 70% of women with disabilities are estimated to be prone to violent assault or sexual violence in their lifetimes. Furthermore, the abuse faced by persons with disabilities compared to persons without disabilities was found to be more severe, more violent, more prolonged, and more frequent. To add to this, due to the CCN of some persons with disabilities, crimes are not reported or prosecuted.

Researchers at the University of Pretoria’s Centre for Alternative and Augmentative Communication (AAC) have made a concerted effort to put a stop to the abuse of the human rights of persons with disabilities.

In order to do so, their research focussed on several different aspects relating to accessing justice for persons with CCN and how to give these individuals the ability to communicate about victimization through various means. Universal design principles were used to help persons with disabilities in court, the South African Police Service (SAPS) was sensitized and trained on the challenges faced by persons with CCN, and an awareness programme was implemented to prevent abuse amongst children with CCN.

Studies in South Africa confirm the CRPD’s Article 6 which notes that women and girls with disabilities face multiple levels of discrimination. Sometimes, women with disabilities become victims of abuse because they may show inappropriate sexual behaviour in public, or they may be overly friendly with strangers, which can be incorrectly interpreted by strangers, who then take advantage of them. Additionally, perpetrators may incorrectly see them as naive without understanding of their bodies. A South African study found that perpetrators of sexual abuse against women with disabilities stated that the victims should consider their unwanted advances and abuse a “blessing”.

These myths, misconceptions and distorted attitudes about sexuality amongst persons with disabilities was one of the first problems that researchers at AAC, led by Prof Juan Bornman, sought to overcome. “A silent victim is the perfect victim,” says Prof Bornman on the link between criminal abuse and persons with CCN.

To combat this, Prof Bornman and her team embarked on a multi-method study which began by teaching women with intellectual disabilities to develop their understanding around the concepts that determine whether the behaviour they encounter in their lives is appropriate or abuse. Liezel Rathbone (PhD alumna of the Centre for AAC) developed a series of social stories to demystify conventional social behaviour and to modify or decrease inappropriate behaviour on the part of the women. In order to focus this around the problems of sexual abuse and rape, the stories focused on aligning concepts of sexuality, dating, romantic and other relationships, the contexts around different relationships and clarifying behavioural codes within these relationships. Imparting knowledge around the concepts of consent and socially acceptable and appropriate behaviour was a key focus area.

Prof Bornman explains that, “Women with intellectual disabilities were part of the discussion and development of the stories in order to empower women through knowledge. Caregivers were part of the process and assessed the appropriateness of the stories. We found that social stories provided an effective method of transferring knowledge of rights and empowering individuals with intellectual disabilities to successfully understand these concepts. This method empowered women with disabilities to be able to take control and speak out against violence and abuse.

Social stories gave these women an opportunity to learn about socially desirable responses to relationships and situations to minimise their risk of abuse because they could understand the difference between different types of relationships and were equipped with the agency and ability to express that they had been or were being abused”.

The research conducted by the Centre for Alternative and Augmentative Communication is making an impact by finding innovative methods for upholding the rights of persons with disabilities, especially those with CCN. Their solutions ensure that the dignity and rights of persons with disabilities are maintained and promoted within the wider context of human rights education and social justice.

Click on the pages below to learn more about how universal design principles were used to help persons with disabilities in court, how we sensitized the South African Police Service (SAPS) and trained on the challenges faced by persons with CCN, and what we did to prevent abuse amongst children with CCN.

Watch the video in the sidebar or click on the infographic to learn more.

How universal design principles can help persons with disabilities in court

Research by the Centre for Augmentative and Alternative Communication at the University of Pretoria have made access to justice for persons with complex communication needs (CCN) possible through using principles of universal design.

Complex communication needs (CCN) experienced by persons with disabilities (particularly those who can hear but who cannot speak) are a barrier to effectively participating in the court process once a case has been laid against a perpetrator. The vulnerability of the victim with CCN is further exacerbated by the fact that they are voiceless and invisible in society. There is the very real risk that they cannot shout or call for help, and they are also seen as defenceless and unable to fight back. This vulnerability is what allows perpetrators to continue with their crimes. It is estimated that in total only approximately 14% of all rape perpetrators are sentenced.

Researchers at the University of Pretoria are exploring ways of giving persons with CCN access to the justice system by allowing them to participate in the legal process. A major challenge to participating in this process is the legal vocabulary. In South Africa, a country with 11 official languages, the vast majority of citizens are not first language English-speakers. Although the legal system does make provision for translators and court interpreters, persons with CCN who are not literate can often not benefit from using translators as they typically do not have the vocabulary to disclose their victimization.

Further research that was conducted with 106 rape survivors who had mental and intellectual disabilities showed that more than 90% of these individuals were able to testify in court. Therefore, Researchers at the CAAC have now found a way to help victims with CCN by using picture symbols (also known as graphic symbols) to represent crimes and actions. The vocabulary, represented by graphic symbols, has been developed along international best practice guidelines and allow the person with CCN to indicate on a communication board what had happened. This board allows the victim to create a narrative detailing their experience and describing the crime or abuse they faced. The study also looked at ways of communicating the vocabulary of the legal system, for example words like witness, testify, affidavit, which had previously been barriers which prevented persons with CCN from being able to access the justice system.

International and national research states that majority of legal professionals do not have the adequate training or knowledge to be able to communicate with a victim with a communication disability. The need for educating legal professionals went further than assisting the person with CCN to communicate their victimisation. Robyn White, a researcher at the Centre for AAC, explains the importance of making people with CCN part of the legal process “If a person with a communication disability participates in the legal proceedings, they could gain new and important life skills that could empower them in not becoming a repeat victim. Therefore, it is essential that people within the legal system such as lawyers, intermediaries and court scribes are aware of ways to accommodate persons with severe communication disabilities in court. Their understanding and use of the guidelines we are developing will allow access to justice for persons with CCN on an equal basis to other South Africans”.

Click on the pages below to learn more about how we sensitized the South African Police Service (SAPS) and trained on the challenges faced by persons with CCN, and what we did to prevent abuse amongst children with CCN.

Sensitizing the South African Police Service (SAPS) to the challenges faced by persons with CCN

“It is more likely that persons with disabilities will come into contact with the criminal justice system than members of the general public. This could be as a victim, a witness, a defendant or being suspected of a crime,” says Erna Viljoen, a researcher at the Centre for Augmentative and Alternative Communication (AAC).

“It became increasingly evident that for persons with complex communication needs (CCN), there are little or no accommodations that enable them to access the justice system. Therefore we had to find a way of ensuring that the first port of call for persons with CCN, the police, were equipped to deal sensitively not only with the nature of their report or statement, but also with their disability” she said.

Reporting a crime begins at the local police station. To allow a crime to be investigated or pursued for further prosecution and ultimately a conviction, an accurate statement needs to be taken from the victim. This is an obvious challenge for the police in the case of persons with CCN. This is because persons with CCN are often unfairly judged as unreliable witnesses and their credibility is called into question. Therefore, much of the abuse and crimes which persons with CCN are victims of, are often not prosecuted due to a lack of credible and effective statements taken from them by police officers.

Researchers at UP’s Centre for AAC found that they needed to develop a sensitization programme for police officers to be able to take statements from persons with CCN. Focus groups with police officers were conducted to obtain insights about their level of understanding and sensitivity around many forms of disability with a special focus on persons with CCN. A data-driven and literature-based training programme was developed that allowed police officers to give input on the barriers they faced when they tried to help someone with CCN to give a statement.

A person who could not communicate using natural speech, was included as a trainer in this training programme aimed at increasing understanding and sensitivity towards disability aspects amongst police as well as providing them with practical experience in taking statements from non-speaking individuals. This pre-test post-test study (with a control group) found that a custom-designed short term training programme was effective in changing police officer’s knowledge, skills and attitudes towards persons with disability, including one of the most vulnerable disability groups, namely individuals with CCN.

Click on the pages below to learn more about how u niversal design principles were used to help persons with disabilities in court, and what we did to prevent abuse amongst children with CCN.

Preventing abuse among children with communication disabilities

In order to allow for persons with cognitive and communication disabilities, and particularly those with complex communication needs (CCN) to access the justice system in the event of being victims of crime or abuse, researchers at the University of Pretoria’s Centre for Augmentative and Alternative Communication (AAC) are developing an awareness programme aimed at preventing abuse amongst children with CCN.

Children with disabilities are 3 to 5 times more likely to be abused than their peers without disabilities. Children who cannot rely on speech to communicate are particularly vulnerable as they have severe difficulty in expressing opinions and feelings, are often passive in interaction and lack experience with answering questions. Therefore these children are at great risk as they cannot communicate that they have been a victim of maltreatment which could include physical abuse, neglect, sexual abuse, exploitation and emotional abuse such as bullying.

The aim of the study done by Amanda Nyberg, a PhD student at the Centre, is to conduct and evaluate a programme at schools aimed at children with CCN between the ages of 7 to 12 to prevent maltreatment by using a variety of AAC strategies. These children are given access to age-appropriate pictorial charts to allow them to understand what constitutes abuse and an infringement on their personal rights.

Children with CCN are given the tools and are empowered to be able to inform their parents, teachers or caregivers that something was wrong.

The study began with training teachers in special needs schools on how to sensitively discuss issues around abuse. The teachers were then equipped to assist the learners with CCN on identifying and reporting forms of abuse and maltreatment.

Researchers at the Centre for Alternative and Augmentative Communication at the University of Pretoria hope that with this prevention rather than intervention model, children with CCN will be empowered to be able to report crimes against them because they will be aware of what is an infringement on their rights. It is envisaged that through programmes like this, children with CCN will grow into adults who are more aware of their rights and ability to access the justice system.

Juan Bornman

September 27, 2019

Estimated Reading Time: 9 minutes

Researchers

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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