Augmentative and alternative communication: Empowering people with disabilities

South Africa commemorates National Disability Rights Awareness Month annually between 3 November and 3 December. The Centre for Augmentative and Alternative Communication (CAAC) at the University of Pretoria (UP) plays an important role in addressing communication difficulties encountered by individuals with physical challenges or persons with disabilities. A disability may be defined as a condition that affects a person's mental, sensory, or mobility functions, restricting their ability to undertake or perform certain tasks in the same way as a person who does not have a disability. When a person cannot speak or otherwise communicate clearly and effectively, others may mistakenly think that person is unable to learn to communicate and make decisions.

For people who are unable to speak, augmentative and alternative communication (AAC) may provide some access to communication. AAC refers to modes of communication that are used less frequently, such as natural gestures or sign language, or the use of  objects, symbols, photographs, line drawings, and traditional orthography (text). To be able to assist a person who is unable to communicate, the person’s strengths and abilities must be assessed carefully, and contextual factors need to be thoroughly considered. Only then is it possible to identify a suitable AAC system. Systems that may be used include communication boards and so-called speech generating devices: laptops or other mobile devices loaded with specialised software. Such systems can be accessed through conventional means (eg pointing or using a keyboard or touch screen) or, if needed, though additional assistive technology such as switches or electronic eye gaze systems. Studies have postulated that a variety of factors can contribute towards better outcomes for people with severe communication disabilities, including contextual factors, social support, personal characteristics and services offered, as well as the effectiveness, versatility and sustainability of the intervention.

The purpose of AAC is to provide everyone with the means to communicate including those unable to speak. AAC strategies play a pivotal role in providing individuals with ways of communicating and sharing information, expressing thoughts and needs, and developing relationships. Everyone has the right to communicate; convey their convictions about the conditions of their existence; request or refuse objects, people, and events; express personal feelings; make choices; access systems that enable communication; and to be spoken to directly. Communication is a basic human right and has been described as ‘the essence of human life’.

The impact of South African political history and the effect of a constitutional democracy in 1994 on the lives of people with disabilities in South Africa should not be undervalued. The disability discourse in South Africa is influenced not only by international developments but also by numerous contextual factors. The quadruple burden of disease in South Africa has been identified as creating a major context for disability. This refers to 1) maternal, newborn and childhood illness; 2) chronic non-communicable disease, such as diabetes and cardiovascular disease; 3) communicable disease such as human immunodeficiency virus (HIV) and tuberculosis; and 4) violence and injury in the entire population. These are all associated with disabilities of communication and affect a large proportion of the black South African population, particularly women and children, who continue to live in poverty.

The relationship between poverty and disability has been demonstrated and in South Africa there is a disproportionate representation of people with disabilities among the poor. The impoverishment experienced by persons in these contexts result in further disadvantage in multiple areas, including education, literacy, health, nutrition capabilities and freedoms. They are also more likely to be affected by vulnerability, risk, isolation, powerlessness and social exclusion.

Persons with disabilities account for approximately 15% of the world’s population. It is estimated that Sub-Saharan Africa has the highest incidence in the world of people living with disability, namely almost 66%. The prevalence of disability in South Africa is approximately 13% and the prevalence of severe disability approximately 5%. The prevalence of communication disabilities in South Africa is estimated to be 6 to 12% in children over the age of five years, although accurate statistics are lacking.

Communication is intrinsic to our humanity. It is considered a basic human right. Human beings need communication to socialize, to learn and to work, and to participate in society. Hence, communication has been described as “the essence of human life”. Being unable to communicate can be seen as one of the most extreme forms of exclusion and disempowerment. A well-functioning democracy presupposes active citizens who not only know their rights, but are able to claim them by ‘speaking up’. When someone has a communication impairment – and particularly for those unable to communicate using speech - the very act of communication is threatened. In addition, communication partners often perceive the process of attempting to engage meaningfully with such a person as too difficult and uncomfortable which results in isolation of the person with communication disabilities as is evident in the quotation below from a person that is unable to speak.

'If you want to know what it is like to be unable to speak, there is a way. Go to a party and don't talk. Play mute. Use your hands if you wish but don't use paper and pencil. Paper and pencil are not always handy for a mute person. Here is what you will find: people talking; talking behind, beside, around, over, under, through, and even for you. But never with you. You are ignored until finally you feel like a piece of furniture.'

- (Rick Creech*)

* Musselwhite, C & St Louis, KW (1988). Communication programming for persons with severe handicaps: Vocal and augmentative strategies (2nd Edition). Austin, TX: Pro-Ed.

Researchers

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  Professor Shakila Dada

  Professor Shakila Dada of the University of Pretoria’s (UP) Centre for Augmentative and Alternative Communication did her undergraduate studies at the University of Durban-Westville (now the University of KwaZulu-Natal). She has been doing research at UP in various capacities since 2003 and has been a full-time employee since 2014.
  Her research seeks to systematically describe and understand the communication and participation patterns of people with complex communication needs. Prof Dada focuses her research on the way in which graphic symbol-based augmentative and alternative communication (AAC) systems can be used to facilitate both language learning for these individuals and their participation in society.
  
  She says that her field of research contributes to the betterment of the world because communication is a basic human right and is intrinsic to our humanity. “AAC helps people who have communication disabilities to participate in everyday life situations such as going to school or university, or being employed,” Prof Dada says. “Participating in society is an important health outcome and is vital for well-being.” Her research matters, she says, because it aims to ensure that people who are unable to speak can tell their stories using AAC systems.
  
  Much of Prof Dada’s work focuses on the role of graphic symbol learning to facilitate the comprehension of language. She is particularly interested in the amount of intervention required and how to train communication partners to facilitate language learning. Prof Dada has also looked at the role of aided modelling for children and adults who require AAC; this includes people with aphasia and dementia.
  
  Over the past 18 months, she has embarked on several new research projects, one of which deals with the accessibility of health information for those with communication disabilities. Taking care of our health involves getting information by accessing relevant health services in order to educate ourselves. For those with severe communication disabilities, this can prove to be an uphill battle as many have difficulty understanding this sort of information. The COVID-19 pandemic has exacerbated the situation. Easily accessible, reliable health information is absolutely necessary in these times, and for people with communication disabilities, navigating this landscape can be particularly challenging. Health information is often couched in confusing, inaccessible language and presented in formats that do not support comprehension and retention. As a result, those with communication disabilities may be underinformed or misinformed, with detrimental health outcomes.
  
  As such, UP’s Centre for Augmentative and Alternative Communication, the Future Africa Institute at UP and UNICEF jointly embarked on a project titled Co-designing Health Communication and Education Materials. These materials were co-developed through extensive consultations and collaborations with various stakeholders, including youth with disabilities, caregivers of children and youth with communication disabilities, and professionals who work in the health and education sectors.
  
  Prof Dada is also working with colleagues to develop and implement a youth leadership programme that will provide vulnerable youth and youth who are Deaf with the skills and opportunities to participate in decisions regarding their lives and futures. In addition, the programme aims to provide youth with the mechanisms they require to hold the structures and institutions that should be looking after them accountable for the care their receive. The project will be implemented in partnership with Leeds University in the UK and various NGOs. Ultimately, it aims to provide evidence of how youth can guide and improve their own futures and those of their communities through meaningful engagement with government in order to maintain accountability for their rights.
  
  Another notable project that Prof Dada is involved in focuses on optimising the effectiveness and equality of collaborations in early childhood intervention (ECI) in South Africa. It takes into account new challenges that have been brought about by the COVID-19 pandemic. A nationwide survey is currently being conducted to understand how ECI practitioners across disciplines communicate with one another in the context of the pandemic. The project is being conducted with colleagues at Roehampton University, London, and UP’s Information Design Division of the School of the Arts in the Faculty of Humanities. It will generate a set of evidence-based strategies for multi-agency work in ECI in South Africa using digital animation as a channel for dissemination.
  
  The InnoFood Project at UP is yet another initiative that Prof Dada is bringing her expertise to. It is being conducted with colleagues in the University’s Department of Consumer and Food Sciences in the Faculty of Natural and Agricultural Sciences. Prof Dada is exploring strategies such as graphic symbol supports to ensure that no person is excluded from the research because of low literacy levels or because they do not speak the language of the researchers. “Our main role is to ensure that the materials, instructions, surveys and communication about the project are accessible (easy to read),” Prof Dada explains.
  
  She also liaises with UP’s Department of African Languages in translating project material into local languages. “This ensures a more inclusive, equitable research agenda, ensuring that participants who may be otherwise marginalised are included in the research process,” she says. A further intersection with the Humanities Faculty is exploring the impact of research on policy as well as ensuring knowledge translation from the sciences into an accessible format – infographics, training manuals and animation – so that findings are disseminated in an equitable manner.
  As for who inspires her research efforts, Prof Dada says: “Quite simply my mother – she always encouraged me to study further and understand better. She was adamant that I get the opportunities for education denied to her.”
  
  Prof Dada encourages school learners or undergraduates who are interested in her field to be brave, ask questions about the field of study and make contact with professionals in the field.
  In her free time, she enjoys reading and taking long, leisurely walks. She loves spending time with her family and listening to the views of her children.
  

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  Augmentative and alternative communication: Empowering people with disabilities