Being dominated

The participants described many scenarios in which the communicative partner dominated the interaction.

3.4.1 Having topics controlled

Limitations were imposed within the exchange itself. For example, Tiny spoke of people deciding on the topic of conversation, and if she initiated a topic which her partners did not want to discuss, they would change the topic, or would say to her directly, “we’re not talking about that right now” (Tiny, 1, 199). Parks described how communicative partners would change the topic if they did not understand him, which made him feel like he was “not really part of things” (Parks, 1, 107).

Topic control occurred when the participants wished to talk about sensitive topics. Tiny said of her mother, “She likes to pretend these things don’t exist and then we don’t talk about them” (Tiny, 3, 156). Tiny wanted to talk about moving out of home, about her loneliness, about her desire to have an intimate sexual partner, and about her dreams for getting married one day, but her mother had told her that there was no need to discuss things that were unlikely to happen.

Similarly, Beauty spoke of how her caregivers would shut her out by avoiding

communication with her. If they did not talk to her at all, they could pretend that they knew what she wanted. For example, in the institution where Beauty lived, residents were

permitted a bath every second day due to there being insufficient personnel to bathe the residents every day. Beauty found this appalling and an infringement of her human rights “And on the days we don’t bath we get a body(?) bath, you know how undignified that is, not being allowed to bath” (Beauty, 4, 125). She was unable to voice her objection to her

159 caregivers because they avoided the topic of conversation. They pretended that they had not understood her, or they did not respond. Parks reported on how the avoidance of talk was used by his caregiver-driver. Parks described a few scenarios in which he wished to confront his employee about some serious issues including those of salary as well as the theft of his possessions. When Parks tried to negotiate with him, his employee would walk away, or pretend not to have understood him.

3.4.2 Experiencing gatekeeping

During the course of the research, Nic’s mother telephoned me. She asked me to please avoid any talk about relationships. Nic had developed a close relationship with a disabled woman at the institution where he lived. The woman was intellectually disabled and a good few years older than Nic. His mother was concerned that I might tread on toes because she was working with Nic and others on how to manage the intimate and sexual side of their relationship. It was difficult to keep his relationship with his girlfriend out of our discussions, although I did try to steer clear of discussing anything to do with his relationship with her. It was only later, in reflecting on the results, that I realised that Nic’s mother was a gatekeeper in this scenario. Gatekeeping as an issue in communicative participation was certainly evident in the

experiences of other participants. Tiny described being taken to the doctor by her mother. Her mother insisted on accompanying her and she always tolerated this because she said that this how it had always been and her mother would get upset if she were asked to sit in the waiting room. Tiny said, however, that she only spoke to the doctor about the reason for coming to the doctor. If it was about the pain in her hips, that is what was discussed, but if Tiny wanted to ask the doctor about something else, her mother would interrupt and say something like “not now, darling” (Tiny, 4,78).

3.4.3 Being abused

(Note: in this section I have purposefully left out the names of the participants). A number of discussions with the participants brought to the fore blatant abuse by caregivers. This abuse was influenced not only by the participants’ communication impairments, but by other factors as well. However, the communication impairments were the cause of the abuse to some extent, and were also part of, if not the reason why the abuse could not be managed. One of the participant’s caregivers, who had been employed by the participant for many years, would threaten that she was not going to take her to the bathroom if she was in any way questioned. This abuse occurred, for example, when she questioned her employee’s

160 behaviour in relation to house management or the use of her possessions without her

permission, or if she did not comply with her employee’s wishes. The employee would also use verbal abuse such as by saying “What do you know?” Hence, the employee used the power that she had to avoid topics. She also used the participant’s communication

impairments as a means to humiliate her employee which had significant consequences. Aside from the psychological effects of this on-going verbal humiliation, the participant became very emotional which made her speech more unintelligible.

Another participant experienced a similar response from his caregiver, who resisted any form of authority from his employer. He reported that if the participant questioned him, the employee shouted at him, ignored him, walked away from him, or refused to fulfil the requirements of his job. For example, he might refuse to drive his employee somewhere, or would handle him roughly when bathing. There were many other examples of this man’s behaviour that were clearly abusive, and that related to the participant’s inability to use communication skills necessary for managing this situation, such as to argue or to negotiate. There is no doubt that disabled people are at risk of abuse (Goodley, 2011a; Roulstone, Thomas, & Balderston, 2011), and that the abuse is expressed in different ways. Hence, hearing the tales of the experiences of the participants was disturbing but not all that surprising. However, the fact that the abuse was primarily caused by the participants’ communication difficulties, and that their difficulties expressing themselves prevented them from being able to stop the abuse or modify their life situations in such a way that the abuse could be avoided, gave some insight into the meaning of communicative participation from a different perspective. Communication then plays a very powerful role in the preservation of the self in life’s activities, and is not confined to getting a message across or of socially interacting, as per definitions such as that of Eadie et al. (Baylor et al., 2011; Eadie et al., 2006), but plays a role in personhood. Quite what the effects of this lifelong experience of abuse meant for the development of the psyches of the participants in unknown. But, given the evidence from the literature of the gravity of the consequences of abuse (Sinason, 2010), the relationship of abuse to communication impairment was most concerning.

(Note: these revelations by the participants were managed in discussion with the participants. They were offered assistance, were given the details of appropriate referral sources, and the participants were assured of anonymity. At the time of writing, one of these employees had

161 been replaced. In the second situation, the participant had agreed that the situation could not be managed without assistance, and family members had intervened).

3.4.4 Having to obey the rules

The communicative situations and opportunities were controlled by others in the institutions where the participants lived as well as by their dependency on others for mobility. Seamus had lived in an apartment in a different city. Unfortunately, his finances were depleting and he had no choice but to take up residence in a government-funded institution. In this

institution, he was not permitted to be outside after 7pm. Hence, one of the activities that he most enjoyed which was to sit outside of an evening, drink a beer and chat to his friends, was not permitted.

Nic was not permitted to be alone with his girlfriend because the managers of the residential facility as well as his mother were very concerned about Nic’s choice of girlfriend and were concerned about the sexual side of this relationship. Similarly, Seamus spoke of the

restrictions placed on the residents in his residential home, saying that private company (for example, when a couple wished to have personal time together) was permitted on Saturday afternoons only. Beauty spoke of the managers of the institution in which she lived not permitting the residents to lock their doors – the justification that was given was that it was for the safety of the residents – and so intimate and private time was problematic unless she disobeyed the rules, which usually led to altercations between the caregivers and herself. These restrictions placed limits on the participants’ opportunities for social engagement, and in so doing, limited their opportunities for communicative participation.