The ICF and communication disability

The ICF has been widely accepted as a gold standard by speech-language therapy associations internationally (Threats, 2008). There are a growing number of studies on communication disability that are based on the ICF conceptualisation of well-being; there are growing numbers of researchers involved in developing code sets for various types of

communication impairments. However, the ICF is not without complication for the

conceptualisation as well as the coding of communication impairments, including those that are lifelong. Despite the amount of research, there are many limitations to the ICF at this juncture.

One of the limitations is the conceptualisation of communication as a matter of well-being. The ICF codes the individual and the focus then, of classification of a person’s

communication functioning, is as an individual. The problem is seen as the individualised problem, and goes against modern discourse in disability as I have shown in chapter 2.

64 Communication in the ICF is awarded its own chapter. In addition, the lack of an accepted conceptual model of communication does not make it easy for all professionals to engage equally with the way in which communication is analysed in the ICF classification system. The underlying theory of communication that clearly was used in the conceptualisation of this chapter is the outdated, transmission model that has been severely criticized for at least two decades in the field of communication theory. In this model, communication is viewed as the sending or receiving of messages or transferring information (Craig, 1999). The

transmission model is in essence a model in which only certain aspects of the communication process are addressed. More contemporary models of communication, such as the

constitutive model that conceptualises communication as a process that produces and

reproduces shared meaning, or the dialogic model which sees the construction of meaning as co-constituted by people cooperating with one another, are metamodels. These models consider various models of communication as each contributing uniquely, differently, and with variability, to the communication process (Littlejohn & Foss, 2008).

The focus of the Communication chapter is on skills, coding what people do, in the form of verbal and nonverbal messages in order to communicate. Most, if not all, of the items in this chapter are activities (such as receiving and producing communication, and using communication devices) and do not incorporate the social functions of communication. Whiteneck and Dijkers (2009) pointed out that conversations and discussions are activities and not social roles, and hence do not reflect social functioning per se. The interactive aspects of communication, the relational functions of communication (Davidson, Worrall, & Hickson, 2008), have to be coded within other chapters. Difficulties with coding have been identified by many researchers, particularly with regard to communication ‘disorders’– some codes are vague, others excessively broad (Threats, 2008; Worrall et al., 2011) and thus interpretation is difficult. In addition to the vagueness and obscurity in coding, many of the so-called functions of communication, such as the phatic function in which an affective or social message rather than a referential one is conveyed, are not captured at all.

Can communication be captured within the ICF chapters? In relation to communicative impairments, there is evidence that there is some congruence between the ICF categories and the views of communicatively disabled people. In a study that garnered the goals by aphasic people and coded them according to the ICF, researchers found that the nine categories of goals that were identified could be linked to all the ICF components (Worrall et al., 2011). The logic then, is that the ICF is a useful model in which to organise the goals of disabled

65 people. When using any checklist or grid to code human behaviour, it is highly likely that one will seek and find that which is universal but miss that which does not fit into the grid

(Kleinman, 1977). Behaviours that do not fit the grid will not be coded, or will be interpreted in such a way that they are coded according to the parameters of the grid even if they do not really fit the descriptions in the grid in their entirety. Thus, by seeking the ‘universal’, data are forced to fit categories, leading to a falsification of the categories, a phenomenon labeled by Kleinman, in his classic work, as a ‘category fallacy’(Kleinman, 1977). The authors of the article in which the goals of aphasic people were coded on the ICF (Worrall et al., 2011) acknowledged the marked difficulties that they experienced with coding – their inter-coder reliability did not reach an acceptable level. Moreover, the authors suggested that the researchers coded goals in different ways, and many of the goals had to be coded at least twice in order for their meaning to be captured. The extent of category fallacy (Kleinman, 1977) evident here confirms that it is difficult to falsify the grid thus rendering its validity questionable, particularly in relation to its use for the understanding of communicative processes such as communicative participation.

The ICF is a system that codes a person’s functioning at one point in time. This is somewhat problematic for people who live with communication impairments that are lifelong, or indeed that change over time. The ICF does not consider the factor of time (Wade & Halligan, 2003). The importance of including time in a definition of participation is underscored by the fact that many developmental theories suggest that participation changes over time, and there is a growing body of evidence that demonstrates this (Anaby et al., 2009). This is particularly pertinent to children, but applies to adults as well. McDougall, Wright and Rosenbaum (2010) suggested that the ICF be expanded to view disability as a developing process, stating, “Disability is not a fixed condition or state. Rather, there is a continuum of ability and

disability that is fluid and changeable” (p. 208). Their primary motivation for this suggestion is that it would resonate with systems theory that recognises that change in one system will influence another system. Nevertheless, the ICF is used for people over the age of 18-years of age. The ICF-CY which is used for children up to the age of 18 years complements the adult version. There are gaps between the two, and there is on-going work to close those gaps so as to ensure a smooth transition from the one system to the other (World Health Organization, 2007).

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4. Chapter summary

In this chapter, I have shown that there are a number of theoretical approaches to the meaning of participation. There are conditions under which participation is possible, which have their roots in social justice. Participation occurs in the social space, and most human function happens in cooperation with others, and so an understanding of the meaning of participation must regard issues around the interdependency of humans on one another as well as those around reciprocity and cooperation. I have identified that participation influences, and is influenced by one’s identity, and that there are various theoretical positions in regard to this notion, which need to be recognised in understanding participation.

Participation is socially constructed, and dependent on opportunity and environmental and contextual variables. However, it is the extent of the involvement with others that is debatable. Attempting to find the common denominators in the definitions of social participation, Levasseur, Lucie, Gauvin and Raymond (2010) analysed the content of 43 definitions of social participation. They came up with a taxonomy that describes it as comprising levels of involvement with others, ranging from proximal to distal involvement. Reflecting the multidimensionality of social participation, their taxonomy comprises 6 hierarchical levels which are useful in differentiating “participation” from “social participation”.

The first level involves the activities that a person does alone, or with assistance, in preparation for contact with others. This level includes activities such as eating, dressing, watching TV, and preparing meals. Like the DCP, this taxonomy recognises the social construction of such activities but places them at the bottom of the hierarchy demonstrating limited, minimal, or even no direct interaction with others. The second level involves activities where there is no interaction with others although they are around. An example would be buying tickets on the internet or going to movies alone. The third level involves contact with another person but not to achieve a common goal. An example might be being with others at a cocktail party but not interacting with them. The fourth level involves an individual collaborating with others for a common goal. Having a conversation or playing tennis, are examples of this level of interaction. Levels three and four include some social roles such as being a parent. The fifth level includes activities in which a person helps another (such as volunteering), and the sixth level involves contributing to society, such as involvement on committees.

67 A number of authors have differentiated between participation and social participation but there is little consensus (e.g. Badley, 2008 cited by Levasseur et al., 2010, p. 2147). The taxonomy is a useful way of differentiating participation and social participation. According to the taxonomy, participation includes all levels, and social participation excludes levels 1 and 2. Levasseur et al. also then distinguish social engagement from social participation, by seeing social engagement as part of social participation but excluding levels 1 to 4. Hence these definitions are based on the relative proximity of involvement with others.

Communicative participation is by definition interactional, and hence is an integral part of both social participation as well as social engagement. This is the topic of the next chapter.

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