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.