Immured, Suspended, Provisioned: The Meaning of Home for People with Complex Communication (Access) Needs

Author: BJ Dee-Price

  • Thesis download: available for open access on 14 Aug 2020.

Dee-Price, BJ, 2018 Immured, Suspended, Provisioned: The Meaning of Home for People with Complex Communication (Access) Needs, Flinders University, College of Medicine and Public Health

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Abstract

Textured layers of communication are critical to basic survival and to achievement of the things that make a good life. These include meeting everyday needs, forming an identity, affiliation with others, making decisions, defending oneself from harm, having control over one’s lifestyle, earning a living, connection with the public sphere, and having a say in the social and political world. From these things one can establish a home. Yet it is not simply communication, on face value, that serves to achieve these social goods. Rather it is socially sanctioned communication in the form of speech and written word which has this power; not guttural vocalisations or staring down at a picture on the tray of one’s wheelchair or purposely swinging one’s arms if one has complex communication needs (CCN).

The purpose of this study was to render as close as possible a picture of what home means to the participants of the study – people with CCN. Yet creating this image required another, preliminary, purpose, and that was to find the required materials and methods that would help capture this picture. Finding or creating new methods suitable for research with people with CCN was a necessary component of the research because, as indicated in the literature, much of it old and sporadic, people with CCN have largely been overlooked as research participants.

Understanding the nature of CCN, and how the experience of CCN might be experienced by the world, formed the early parts of this study. The concept of ‘communicative competence’ emerges early in the thesis through the works of sociologist and critical theorist Jurgen Habermas and in the writings from the field of Augmentative and Alternative Communication (AAC). It is from this position that one begins to learn what counts as communication in society. This in turn, presented a twofold dilemma for the study. Firstly there was little prior research undertaken specific to the sociological understanding of CCN culminating in descriptions of persons with CCN as presenting challenges for efficacious research, and without background information it was difficult to locate CCN within the broader field of disability in which it was imbedded. There was no clear indication of the numbers of persons with CCN in Australia, let alone where they might live. The second dilemma, related to the first, demonstrates there currently exists very little to guide research practice when interviewing people with CCN. This meant that, in order for the study to ensue, a suitable methodology and the development of reliable methods would be required. The study, as such, was founded on two parts. The ‘how’ of doing research with people with CCN, as well as the ‘what’ – the meaning of home.

The study explores the nexus between disability and housing in general, particularly as it has come to be known in Australia. An outline of the history as well as current social policy changes to the Australian landscape of disability and housing provides background colour for this work. Onto this background the typology of home and housing, the listing of capabilities developed by Martha Nussbaum (2006), the notion of status enhancement (Jonathan Wolff, 2009), theoretical challenges to traditional linguistics, and the emerging methodological innovations of sensory ethnography, particularly that of anthropologist Sarah Pink, is painted.

From here pieces of information not available in the literature are merged to support knowledge gaps, including the findings of a quantitative analysis of secondary Australian Bureau of Statistics reports revealing early evidence of a relationship between CCN and home being in residential care settings. Spurred by the influence and flexibility of sensory ethnography, new methods (combining AAC with such tools as photo elicitation) were developed and tested for the study, which reduced the need for participants to provide spoken or written responses. Furthermore, processes of obtaining consent and providing feedback were developed that welcomed participants with cognitive impairments.

The thesis includes dabblings of self-portrait – reflexive, embodied, and invested with my own experience of CCN. This personal insight was helpful when it came to crossing the thresholds of ten different homes and meeting the people whose stories, alongside my emplaced experience, would provide the ‘what’ of the meaning of home with many illustrations of home experience. The uniqueness of each participant is described, yet these stories bear strong themes shaping the themes Immured, Suspended and Provisioned. The ‘how’ of doing research with participants with CCN resulted in participant feedback that was combined with feedback received during the method testing phase.

The study offers rich and unique insights into what home means, not just for people with CCN, but also for all people, with or without impairment(s). Much of this is detailed in what access to communication means and how many of us take it for granted. Communication remained at the forefront of the study; its unfolding dynamic was observed with ever-growing interest. From the beginnings of the study, the concept of the ‘architecture of communication’ emerged as connected to the many types of communication-promoting features which surround us (or not), influencing the extent to which we can live quality lives.

Communication is faceted and layered; it includes the types of conversation starters in or around one’s home, internet and social media use, prayer, access to a communication support worker, how furniture is placed to support face-to-face interaction, snowballing into something that could be captured as data and analysed. Alongside the ‘what’ of the meaning of home and ‘how’ methods might work, an appreciation of communication access as both encompassing and measurable is also described. Even more compelling is the finding that communication access forms the foundation from which notions of the good life such as Nussbaum’s (2006) capabilities are able to flourish. Without good architecture of communication, capabilities are thwarted and home exists as little more than a ‘venue’, an ‘accommodation’ that fails to accommodate ‘home’.

Keywords: Complex communication needs, CCN, disability, communication impairment, home, alternative and augmentative communication, sensory ethnography, communication acccess

Subject: Social Work thesis, Disability Studies thesis

Thesis type: Doctor of Philosophy
Completed: 2018
School: College of Medicine and Public Health
Supervisor: A/Prof Lorna Hallahan