Full communicative inclusion

For the participants, full inclusion to communication in social interaction was undergirded by their being in social interactions under conditions in which they were recognised as

communicative partners. For the participants, recognition as a communicative partner was determined by a number of conditions, but all of these conditions related to how the individual was treated by others as a person.

4.1 Accepted as being disabled

Beauty and Ellie said that they felt like they could participate in the company of people who did not judge them at all. Again, their speech or language impairments were not seen as central to their restricted communicative participation, but acceptance of them as disabled people was. The literature is replete with descriptions and analyses of the shunning of disabled people but what is relevant here is that the rejection of the participants as disabled people impacted on their communication. The lack of regard for them as disabled people was inextricably tied in with their communicative experiences. Ellie described going on holiday with a friend: “you know, I went to their holiday, and there was 14 of us, but it was so much fun because you know we all, now there was norm (unintelligible 4 s). I was the only disabled person, and I got on so well with everybody, um, it was very, very nice” (Ellie, 1,114). Ellie spoke about the fact that she was accepted as being disabled, and throughout the holiday she felt free to be herself, which included being free to communicate. She felt invited, and no different from anyone else.

4.2 Being cared for

With regard to her caregivers, Tiny said “Yes, but most of the caregivers should not be employed and should go and do other jobs because their heart is not in it. It is just a job. And so I have to, to educate them but they still don’t care. It’s not stupidity, they just don’t care at all” (Tiny, 2, 108). Beauty also spoke about the importance of the care provided in terms of communication, speaking of her caregivers in the same light as Tiny did. Kittay et al. (2005) wrote that how care is given and received is not only based on human need, but also upon cultural, ethical and socio-economic issues. In the South African context, care is enmeshed with politics and history in which women, particularly Black women, have been in caregiving roles (Swartz, 2012). Often, the caregiver is a person who requires care herself. Nevertheless, the participants in this study perceived that the lack of care from their caregivers had a significant impact on their feeling recognised as communicative partners. It was rare for the

166 participants to experience satisfactory care. Beauty said of one of her caregivers, “She is fantastic, and we have such a nice relationship. She comes and does things for me, and of course I pay her, but it’s not about that (unintelligible), you see she is one who cares and so we can talk to one another as girl to girl and that is how it should be” (Beauty, 5, 47).

4.3 Having choice

Serena said that that living among disabled people who accepted one another was the

advantage of living in a residential facility for disabled people. She said that on a day-to-day basis, she was accepted and could communicate easily. Serena had trained her caregiver to communicate with her. She had befriended a man who had significant communication difficulties himself but who understood her communication. She had adapted to being a listener rather than a speaker. Hence, under conditions of being able to control selecting her communicative partners, Serena had communicative access.

4.4 Being given time

Most of the participants spoke about how much they valued being given time to

communicate. Serena found this a particularly challenging issue. Lebo said that he often would not start speaking because he could see that his communicative partner would be in a hurry and he did not want to delay the person. He said that he found this upsetting.

4.5 Being understood

Another of the conditions of access was that the communicative partners understood the participants’ communication. Parks said that he had better access to communication once his speech was more intelligible.

4.6 Being given respect

Seamus And my family (? because) And so they respect us Karen Ok, so it’s part of the respect for your family

Seamus Yes

Karen Got it, and others?

Seamus Who?

Karen Other people, like strangers? Seamus Nah, they the worst

Karen At, I mean what are they um the worst at?

Seamus Hey, they like you know they dis (? dis) me and I am a man and disabled and there’s just no like you know no respect like

Karen So you want respect as a man and as a disabled person?

Seamus Ja, but you see, respect, it’s how you treat (?see) me and then you talk to me with respect

167 The participants expressed that because they were not respected as people, they were not communicated with in ways that they considered to be decent. Seamus spoke of his expectations of being respected as a consequence of his being a man, and adult, a disabled man, and a member of his family. Importantly, how he saw himself respected as a person was reflected in how he perceived people spoke to him.

4.7 Vulnerability

Full communication inclusion was rare, and was very vulnerable. The participants described very few scenarios in which all the conditions for communicative participation were met. There were, however, times when they felt that they were full and equal communication partners and could therefore participate fully.

Beauty spoke of her relationship with her able-bodied boyfriend. In most contexts their communication was successful for both parties. However, there were times when this success was damaged. One example that she gave was when they engaged in romantic talk, and her ability to keep her voice quiet and gentle was extremely hard for her. She also had to work hard to ensure that they did not enter situations in which she would not cope

communicatively. Beauty’s story spoke to the vulnerability of their communicative participation.

5. Conclusion

The participants had identified that being recognised as a communicator was crucial to their communicative participation. On a continuum from total exclusion to inclusion in

communicative interchanges, the participants experienced tremendous vulnerability in being recognised. Participatory parity (Fraser, 2003) was challenged by this lack of recognition. The status of the participants as communicators was lowered, rendering them in a state of invisibility or a state of liminality (Murphy, Scheer, Murphy, & Mack, 1988).

In order to participate in society as a communicator, the communicative partner has to recognise one’s communicative status, and for communication to be successful and effective for all partners, status as communicators has to be equal. It was clear that in most of life’s situations in which they communicated, they were treated as if they were of a lower status. They were not recognised as communicators.

The capacity for autonomy, to communicate as a communicative partner of equal status, does not only depend on the cultural values, or on the values and moral behaviours of the

168 communicative partners. It also depends on the communicator having certain resources

available to act freely. A potent resource that was unavailable to the participants was the power of intelligible speech. How does one participate in social interactions successfully when one’s ability to communicate is severely restricted? This was the second theme that emerged from the data, which forms the topic of the next chapter.

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