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The participants also perceived that they were ignored because their unintelligibility instilled a degree of discomfort in people because they did not have the necessary skills to

communicate with people with communication impairments. Typical examples of this were

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152 people excluding them from the communicative interaction such as their description of

waiters asking, “Does she want some tea?”, and doctors asking, “How’s your daughter doing?” This “does she take sugar” phenomenon has been described repeatedly by disabled people, as behaviour that dismisses them and overlooks their very existence (Scully, 2008). In some cases, the participants reported that they depended on someone advocating for them because they were not able to do it for themselves, such as Tiny, whose mother had

developed the standard line, “Please talk to my daughter” when anyone spoke to her instead of directly to her daughter. In other cases, they were able to state their own needs, and as Beauty stated, often she became so irritated with the dismissive attitude communicated to her by the assumption of her inadequacy by the speaker, that she would respond with irritation or anger.

Lebo spoke from the perspective of an adult who lives in two worlds. He lived with his family in an area which is known today as Soweto, a township southwest of Johannesburg that was established during the Apartheid regime in South Africa. Soweto remains a

segregated township. Lebo had had contact with his immediate family as well as neighbours. He spoke only his home language there. On a daily basis, Lebo was transported to an

organisation outside of Soweto in which he interacted with mostly White disabled people, and where he spoke English. He spoke of being feared: in his home environment, he believed that “people run away from me. They scared. You see, disability is not a good thing and maybe they see me as something that they must be scared of” (Lebo 1, 31). He did not see people as fearing his speech, or fearing interacting with him, but fearing what he might represent to them in terms of their African beliefs about disability and of physical disability. In his words, “They’s frightened of disability in my culture. It’s better these days but it’s still here. Those people, I think they … I don’t know what they believe. My grandmother she tell me that she think, she thought, I’m a something from the past, but really, the people believe all things, all kinds of things(laughing)” (Lebo, 1,47).

The intersection of race and disability was apparent in this analysis. In the organisation that he attended daily, Lebo reflected on a different fear. He spoke of the fear that he instilled in others in relation to his race. Despite fact that the organisation has been open to all races for at least 18 years, and Lebo had known it only as an organisation where people of all races have met, he spoke of being treated with reservation by some of his peers. When I asked him if being Black made any difference, he said that it did, saying “they racist here so many of

153 them. I’m not blaming them…it is how they were brought up. And we didn’t go to school together and get big together. They lived there and we lived there. Now we must be used to each other…huh…this is very very hard for some of these people, but it’s not like that anymore here. Now we are all the same” (Lebo, 1, 54).

Lebo was markedly unintelligible. His speech was less intelligible when he spoke to

strangers, and he spoke of how uncomfortable he felt “when I see them so scared of me. They look so scared. Why must they be like that, hey? Jesus, they must just listen and they must just stand there not so (Laugh accompanied by gesturing with his hands over his face). Jesus, this is terrible you know” (Lebo, 1, 60). Hence, Lebo perceived that his interaction partners feared him in respect of being a disabled person in his community, as a relatively

unintelligible person in some of his communication interactions, and as a Black man in a predominantly White organisation.

He said that throughout his childhood, and well into his adulthood, people in his immediate community would prefer not to have him around. When I asked him if his speech had

anything to do with this fear, he said that he did not think his speech was any more of a factor than the disability as a whole. He saw his speech as indivisible from the whole picture. In contrast, Parks had been very aware of his speech from early childhood. He saw his speech as an important contributing feature of his disability, and that his unintelligibility had been a major influence on his life. He did not mention the word ‘fear’ in relation to others, but spoke of their discomfort. Tiny put people’s sense of discomfort down to people not knowing about disability. She said, “Yes and because they haven’t been educated about disability. There is so much ignorance and people don’t know how to be with people with disability” (Tiny 4, 19). In relation to people other than her family members, Tiny spoke of how both her speech and her physical impairments made people uncomfortable. Throughout the interviews, she made a definite distinction between her speech and her other impairments, and identified that there were times when one aspect was more dominant in creating discomfort in others.

2.6 Silenced

The participants described their experiences of being silenced upon entry into a potential communicative situation. In other words, they were given an indication by people around them that they were not to speak. This would occur even if they did not intend to speak. Tiny spoke about how her mother would look at her in a way that Tiny took to understand as a silent message that she was expected to keep quiet. Or, the indication to be silent was given if

154 they showed the intention to speak. Beauty said that it was very clear to others that she

wished to speak because the physical effort that was required by her to speak resulted in her having to take a breath, and she often extended her arms when initiating speech. The

spasticity in her trunk increased with the anticipation of speaking and so she arched her back. This very obvious set of movements meant that people could see that she was preparing to speak. At times like this, she had experienced others turning away from her, or purposefully starting to speak before she could start.

At other times, the participants were silenced when they spoke. Ellie spoke of how people would interrupt her, mid-sentence, and how this would effectively silence her. She would feel “so bad” that she would “just keep quiet. I mean, why carry on? They don’t care about you so you just shut up. Like what you have to say is rubbish” (Ellie, 2, 8). The participants were also silenced by their communicative partners indicating to them that what they had said was indeed unimportant. Tiny told a story about how she was involved in telling a person at a group that she met with about a particular occurrence. She said that this person rolled her eyes and that she felt “so small” that she would not continue. Tiny said that this kind of humiliation happened to her “quite often” and that “you just feel so unimportant” (Tiny, 3, 212).

In contrast to Tiny describing how her family members in particular would “make me feel so stupid that I would never dream of saying anything” (Tiny, 3, 78), being silenced was not always perceived as being purposeful. Serena said that she often wished to enter a

conversation, but did not because she had learned that people did not have the patience for her, and would not give her the time, so she often sat in silence. She felt that people would know that she had a contribution to make, but would deliberately ignore her. Sometimes, they would say something to her but before she could respond, they would be off onto the next sentence or topic. She felt that by doing this, her communicative partners completely disregarded her need to share.