​It is astounding how fervently many children with severe disabilities and little or no speech communicate, even though they cannot speak.

“People often don't observe how much communication takes place without speech," says Dr Martha Geiger, a registered speech therapist with a passion to increase the communicative participation of children with severe disabilities in under-resourced communities.

As a senior lecturer at the Faculty of Medicine and Health Sciences, her work at the Centre for Rehabilitation Studies in the Department of Interdisciplinary Health Sciences includes teaching, applied research and supervising student research about diverse aspects of disability and rehabilitation.

Most nonverbal children have a considerably higher level of understanding than their expressive communication indicates, she explains. “The challenge is to find ways of connecting with them: understanding what is important to them, how they express that and then building on that form of expression to create opportunities for them to communicate their thoughts, desires, fears, joys and insights. In the process, you get to know the child as a unique person."

Connection with rest of the world

Geiger, who completed her doctoral thesis on the use of cultural resources to create an inclusive environment for children with severe disabilities, believes these resources can provide many such children with “a much needed connection with the rest of the world". This can facilitate a shift in the way therapists approach children with severe communication disabilities.

Geiger, who is physically impaired herself, has been working with mothers of children with severe disabilities to find out how these children can enjoy communicative participation despite their disabilities. The purpose of her research is to identify culturally determined nonverbal, pragmatic and other elements of social interaction in a Xhosa language context. This follows her earlier case study about this topic in a Tswana speaking community in rural Botswana.

“Some similarities in the nonverbal, pragmatic and contextual elements of communication in the various Southern African languages can be put to great use. It is up to us to increase what children with severe communication disabilities can do and how much of it is understood. We need to acknowledge and build on these cultural resources," Geiger explains.

Severely disabled children who live in remote communities are among the most neglected populations in terms of rehabilitation services globally. “Many are in desperate need of appropriate and effective intervention strategies. These children and their families cannot access formal communication interventions or assistive devices, either because of poverty or a lack of access to appropriate services."

According to Geiger most children with severe disabilities and little or no speech have a surprising potential to communicate. Examples include facial expressions, body language, eye-blinking and eye-pointing responses to spoken questions and voicing, as well as different sounds such as grunts and squeals.

Cross-cultural communication

Her research included spending time at a local outreach clinic in Kraaifontein, where she engaged with Xhosa speaking mothers who brought their children with severe cerebral palsy for physio- and speech therapy. Geiger engaged the help of two language facilitators to unpack the mothers' experiences and to help collate their knowledge about their children's nonverbal communication.

Without exception, the Xhosa speaking mothers confirmed the same or similar examples to what worked in Botswana in their own cultural context and expressed enthusiasm to test some of the ideas," she says.

For instance, in Botswana idiomatic language which was visualised on communication boards, enabled severely disabled children to communicate in powerful ways to which they did not have access before.

Geiger explains: “The Xhosa culture, like the Tswana culture, contains many culturally determined nonverbal cues which can be used to enhance communication with severely disabled children. A child may for instance not be able to say thank you, but when accepting a given object can show appreciation by bowing his head and lowering his gaze. Even non-standard variations of this gesture can be recognised by uninformed community members when used by a child with a severe disability."

Some examples also apply to other Southern African indigenous languages, implying that these can be understood beyond individual language contexts. This has implications for the wider understanding and use of such elements beyond individual languages in a region. “Due to the wider usage of identified nonverbal and pragmatic elements across the region, the emphasis had to shift from culturally determined elements (specifically within the Xhosa language context of this study) to strategies which are culturally appreciative in the given context.

“I find it exciting that there is so much in the different cultures to build upon. The mothers (in the study) started looking at promising nonverbal elements in other languages."

Her research also highlights the fact that therapists must aim at identifying culturally appreciative strategies to improve community participation. “In this way, we as therapists can support those things that mums are already doing and already know about their children, but have just not put a name to yet. Sometimes they just need affirmation that it is worth something and that there are more options to communicate."

According to Geiger there is a need for more interventions and research “with" rather than “for" children with severe communication disabilities and those with whom they communicate. “Because therapists tend to have a prescriptive approach and deficit views of the status quo, these mothers often stop the good things they are doing when we arrive because they think they are not the right things."

Optimising resources

She also found that the social inclusion and non-ostracism of mothers of children with disabilities needed to be prioritised in order for the children to enjoy better communicative participation. This has implications for clinical practice, training, and policy planning and implementation. “We as therapists are often so geared to 'fix' the impairment of the child that we don't look at the whole picture. Even with that impairment, the child could have a better quality of life and enjoy communicative participation if the mother is accepted."

There is not only a need to address challenges related to communication therapy service delivery, but also to revisit the goals of speech therapy, Geiger says. “This means a shift in emphasis from an intervention for the child to optimising resources in the child's environment."

Speech therapists and other rehabilitation professionals could also adopt more culturally appreciative approaches, especially when working cross-culturally. “We need to listen to mothers' perspectives and partner with them to establish strategies in which parents are not only receivers of services, but are acknowledged for the active role they can play, and already do."

Caption: Dr Martha Geiger

Photo: Damien Schumann