The communicative participation of adults with cerebral palsy

[摘要] ENGLISH ABSTRACT: Conducted within a critical disability studies framework, this study explored the experience of communicative participation by adults with cerebral palsy who live with severe communication impairments. The concept of the participation of communicatively disabled people is relatively new, and the theoretical understanding of communicative participation is underdeveloped although participation is increasingly recognised as a central goal in rehabilitation. In addition, there is a paucity of information with reference to the trajectory of lifelong communication disability. Little is known about the communicative participation of adults with cerebral palsy in South Africa.Nine adults with cerebral palsy, who lived with significant communication impairments, participated in the study. They were between 32 and 49 years of age, and had lived South Africa all their lives. They were observed in social interactions in their daily lives on multiple occasions and took part in serial interviews over a six-month period. Using a pragmatist grounded theory approach, the data were analysed from an interpretive basis.Four main categories were constructed. The first category was 'being misrecognised as a communicator, which showed that the participants were not acknowledged as having equal moral participatory status in communicative exchanges. The second category, 'contexts for communicating, indicated that the participants lived with significant communication impairments which resulted in their experiencing limitations in a broad spectrum of life's activities. The third category, 'an embedded communicative self, illuminated that the participants saw their communicative disabilities as embedded within a broader picture of being disabled, and that their communication impairments had a marked effect on their identity development. Through an analysis of lifetime contributions to communicative participation, the final category, 'dynamic participation revealed how communicative participation is a fluid, ever-changing process.Extending Ikäheimo's (2010) model of social participation and recognition, a 'dynamic recognition-theoretical model of communicative participation is presented. Communicative participation is defined as a dynamic social process. It is undergirded by the moral recognition of the interactants as communicative partners, and is influenced by time as the dimension through which all communication takes place.

[发布机构] Stellenbosch University