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

Constance Ntuli's research matters because she wants to change mindsets and help 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.”

Prof Shakila Dada and Constance Ntuli

June 26, 2023

Researchers
  • 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
  • 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.

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