University of Pretoria researchers give the voiceless a voice

How do people who cannot speak consult with their doctor and tell them what is wrong?

To answer this, researchers at the University of Pretoria’s (UP) Centre for Augmentative and Alternative Communication (CAAC) in the Faculty of Humanities conducted a study that involved designing a framework to develop health education material for people with complex communication disabilities.

“Those with severe communication disabilities are often marginalised and viewed as people who have nothing to say,” says Director at the CAAC Professor Shakila Dada. “This could not be further from the truth, which is why the centre is committed to ensuring that people have access to various means of communication through augmentative and alternative communication (AAC). We do this in consultation with people who have complex communication needs (CCN) because we believe that nothing should be done for people with disabilities without including them in the process. It is also important to remember that AAC is not about the boards or technologies, but about the people.”

The study was published in the journal Health Expectations and aimed to bring accessibility and justice for people with CCN into sharp focus, particularly during the COVID-19 pandemic. The study found that when it came to accessing healthcare, people with disabilities faced difficulties in three distinct areas: interacting with healthcare workers, experiencing feelings of disempowerment and the presentation of healthcare material.

Healthcare providers did not have the skills, time, communication resources or skills to interact patiently with people with CCN. In addition to this, healthcare workers did not have the right attitude; many would speak down to patients with CCN or not give them the opportunity to make health-related decisions for themselves.

People with CCN also had their own internal barriers in terms of their level of empowerment, and their willingness and ability to speak for themselves; their skill at making themselves understood also varied, as well as their access to assistive devices (such as a computer or smartphone) to assist their augmentative and alternative communication needs.

Another barrier was the format in which healthcare information was presented. This included how complex a pamphlet or brochure was to read, the patient’s home language and comprehension levels, how the content was presented and the integrity of the information.

In order to mitigate these challenges, UP’s Centre for Augmentative and Alternative Communication engages the services of a staff member with CCN. Constance Ntuli is a valuable member of the team whose input into this and other projects is critical.

Ntuli lost her voice as a child and got her first assistive communication device in 2009. Her path to a career at the centre began when she attended UP’s Fofa Communication Empowerment Programme; she can now communicate through electronic communication devices.

“My job entails raising awareness about AAC,” she says. “Working at the CAAC has really helped me to improve my self-esteem. I am grateful because it is not easy being disabled and jobless, or clueless about my future. I love helping other people and opening up the world for those who can’t speak by working on projects that greatly help and improve our lives directly.”

As a disability advocate, Ntuli speaks of her experiences as a person with CCN trying to access healthcare. “I really didn’t enjoy going to the hospital, because sometimes I felt judged. As a mother with disabilities, it is sometimes twice as hard. Also, the information is provided so quickly – there are so many terms that I don’t understand and there is no time for me to type my questions on my AAC system or even to respond to questions.”

Ntuli says that the centre’s study is important because it encourages people with disabilities to be independent. “There are some things that I want to discuss with my doctor confidentially,” she says. “If there isn’t privacy and someone else has to speak for me then it means everyone will have to know my medical affairs. Everyone deserves to have privacy and to be treated with the care that they deserve.”

The study was funded by the United Nations Children’s Fund (UNICEF) and has resulted in free-to-use communication boards. Those with CCN can use these to communicate without an electronic device when they go to hospitals and doctors. This offers people a greater sense of dignity and autonomy, especially because COVID-19 restrictions has meant that caregivers often are not allowed to accompany patients. The boards can also be used in other contexts – those with severe speech impediments, low literacy levels or for whom English is not a first language can also make use of them.

Click on the webseries episode in the sidebar to learn more about Prof Shakila Dada’s project and why disability rights and access are human rights.

Click on the next webseries episode in the sidebar to learn more about Constance Ntuli  and what drives her.

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.
  

  More from this Researcher
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  Constance Ntuli

  Constance Ntuli has been working at the Centre for Augmentative and Alternative Communication at the University of Pretoria (UP) since 2013. She was introduced to the centre in 2009 when she was invited to participate in a youth empowerment programme there. The programme was geared towards youth and young adults who have little or no functional speech, and who rely on assistive technology to communicate in their daily lives.

  Since joining the centre, Ntuli – who makes use of augmentative and alternative communication devices (AAC) – has upskilled herself by gaining knowledge and experience in AAC through various projects, research and training programmes. Ntuli is also part of the UNICEF Youth Forum at the centre, and is involved mainly in advocacy work, often delivering talks about her lived experience.

  She says her work contributes to the betterment of the world because she is committed to changing people’s mindsets about individuals who have little or no functional speech. “A change in thinking is important – I show people the benefits of assistive technology and how this helps in communicating effectively,” Ntuli says. “I hope that by demonstrating this within my daily life, those who also experience communication difficulties can see that the possibilities are endless.”

  Her research matters, she says, because it is about changing mindsets and helping others who, like her, have little or no functional speech. “With assistive technology, and specifically AAC, I can demonstrate how one can live a life of meaning and purpose, and a life of abundance.”

  As to whether a specific event or person inspired her, Ntuli names Artscape CEO and disability activist Marlene le Roux. “People like Marlene le Roux inspire me to live a life of passion, purpose and advocacy for others with disabilities,” Ntuli says. “After Marlene was diagnosed, she took the bold and brave decision to not allow her disability to define her.

  Ntuli has two other role models: the late Dr Cival Mills and Martin Pistorius. Dr Cival Mills lived with locked-in syndrome and used AAC, and Pistorius is still living with the condition and thriving thanks to AAC. “Both of them authored books and dedicated their lives to advocating for people with disabilities,” Ntuli says. “I hope to follow in their footsteps.”

  Her advice to learners and students interested in her field would be to begin with passion about the field of disability. “Be motivated to extend your knowledge by engaging in research. AAC is quite a unique field; you will learn the theoretical side of assistive technology but also engage in the practical aspect by exploring various types of AAC devices.”

  In her spare time, Ntuli enjoys going to theme parks. She also loves cooking (and watching cooking shows), fashion and listening to music.

  More from this Researcher

Related Web Series

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  How do UP researchers help people who cannot speak get medical help and tell doctors what is wrong?

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  Meet Constance Ntuli - a University of Pretoria researcher with complex communication needs

Related Photo

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  Constance Ntuli speaking to Prof Dada using assistive speech on her tablet