The participants in this study spoke a variety of home languages, and all spoke English. Seamus, Lebo and Nic had been educated in specialised schools for Black children with cerebral palsy during the Apartheid years; Lebo’s and Nic’s education was completed after 1994. Their schools taught only in English and so they had become bilingual through their school years. In relation to questions around intelligibility, they reported that they could not tell if their listeners who were English-speaking could not understand them because of their accents which were distinctive of their home languages, or whether their speech impairments were the cause of the communicative breakdowns. They were definite in their thinking that they were more intelligible in their home languages, which rendered communication in their home language preferable. However, throughout their lives, they had been immersed in English-speaking contexts, first through education and later through employment opportunities.
As an adult, Nic also lived in an institution in which English was the dominant language spoken. He thought that he was fully bilingual and that he had become comfortable with communicating in English.
Seamus’ home language was French, but he did not speak English with a French accent. He reported that he was comfortable speaking either French or English. He said that once the family moved from Cape Town to Johannesburg where his father had secured employment, he started to attend a specialised school. His parents had spoken English and French to him and so he had no difficult with the language of instruction. However, he felt excluded by the children who spoke vernacular languages. Over time, he learned to speak Xhosa but not very well. It enabled him to understand some of what the children spoke, and to interact a little more easily with people. The family lived in a Black township, but mostly associated with families from their home country, and so Seamus was comfortable with them as his French was well-developed. However, when interacting with other Black children at school or in his neighbourhood, he experienced difficulties, limiting his participation in social
communication interactions.
2.2 Communication and impairments associated with cerebral palsy
A number of condition-specific factors that are experienced by people with cerebral palsy were found to influence communicative participation. Consider this excerpt (Tiny, 1, 73-82):
172 Tiny And I used to drool a lot but now I don’t drool at all
Karen Did it interfere with your speech?
Tiny I can’t remember, but I think so. Now I have the opposite – I have a dry mouth from all the medication
Karen Are you on lots?
Tiny Ja. I had 21 operations you know and I resent those operations ‘cos they were failures and did not do me any good
Karen Are you feeling lots of effects as you get older?
Tiny My CP is much worse. I am wheelchair bound and really can’t move.I have a catheter – it was a good decision ‘cos now I can go to the meetings and not have to worry. And I have a lot of difficulty in transferring. And my mobility is severe, it is really bad, Karen. I am not able to move around very much at all.
Karen mm
Tiny I had a rhizotomy when I was 16 and it was bad. I was too old to have it and I have had a shoulder op and 5 hips ops and leg operations and oh so many, too many, and it was all bad and I also have Moros, bad ones, you know, I get frights easily so that interferes with things.
2.2.1 Effort
Communication required effort. For example, all the participants in this study experienced some degree of functional limitation while eating. Eating is a social activity during which much communication takes place. However, for all participants, eating was an effortful activity which prevented them from being able to communicate at the same time. Mary and Serena were able to eat independently but while eating they were unable to communicate in any way other than by using gestures. Tiny and Ellie were independent feeders but eating was slow and they were not able to eat at the same pace as others and so they often chose to eat alone. Beauty was an independent feeder although her food had to be cut into very small bits in order for her to manage. Beauty was able to speak within mealtimes, and she was able to keep up in terms of the pace of a meal, but communication took tremendous effort on her part.
Communication was also curtailed when the participants were walking or pushing themselves in their wheelchairs. Although communication did occur during these activities, it was
slower, interrupted more often, and in some instances intelligibility was compromised. Hence, the effort involved in carrying out one activity led to compromise in communication functionality. In addition, the participants reported that they fatigued easily when
173 Parks felt some degree of responsibility in ensuring that their listeners understood them, which compounded the effort that they had to expend when communicating.
2.2.2 Pain
Tiny’s experience of pain exemplified the difficulties faced by the participants. Through the course of this research, Tiny experienced an exacerbation of the pain in her hips that she had experienced for many years. She had undergone almost 30 orthopaedic operations in her lifetime, many of them related to her pelvis, hips and legs. In a period of about 6 weeks that Tiny had a rapid deterioration in hip function with accompanied pain, she was not able to leave the house except to see the doctor. She was heavily medicated which made her feel distanced and disoriented. She was unable to sit and had to lie in bed most of the time and so she could not access the computer. Her interactions were limited to her caregivers and her family members. Despite the extreme nature of Tiny’s experience, pain and its effects on social isolation were reported by all participants. They all reported that pain interfered with their making contact with people, and exacerbated their communication impairments. Communication when in pain required extra effort.
2.2.3 Illness
All participants reported that illness took a heavy toll on them, and subsequently on their communication. The common cold was experienced very significantly and often resulted in upper respiratory complications, sometimes requiring hospitalisation. For Serena, illness usually resulted in her not being able to eat, and she became weak. The periods of isolation due to illness, as well as the effort to communicate meant that for certain periods of their lives, the participants’ ability and opportunity to interact with others was limited.
Furthermore, they described significant communication issues related to their illnesses, such as the difficulties communicating with healthcare practitioners. Serena said that when she was ill, she was not able to use her VOCA and Lebo said that doctors assumed that he was unable to express himself.
Both Serena and Lebo expressed their dissatisfaction with doctors assuming to know what to treat and their inability to satisfactorily protest. Beauty spoke of the importance of having a family practitioner who had known her all her life and who was aware of how to
174 2.2.4 Moro reflex16
Tiny and Beauty described their Moro reflexes as interfering with their communication. Both of them described that their Moro reflexes drew attention to their bodies, and interrupted the flow of communication.
2.2.5 Drooling17
Although none of the participants mentioned drooling as interfering with their
communication, I became aware of the effect that their drooling had on their communication, and when I asked the participants about it, they agreed that it did interfere with their
communicative participation. Serena and Mary experienced difficulties controlling saliva. Mary’s drooling increased with physical effort, and when she used her pen and paper to communicate, saliva would often spill onto the page. Serena drooled as she fatigued in her attempts to communicate for long periods, which did not interfere with her ability to get her message across, but which did draw attention to itself.
3. Interpersonal communication and communicative participation