the therapists. I get a lot of referrals of ‘this may
help’ and ‘that may help’. They had a massive
case conference before the adaptations – it was a
case of ‘how normal can we make her first? Are
the adaptations necessary?’
The lists of recommendations for communication access, as produced by Clark (2002) and others, clearly challenge the imperatives of ‘normality’ and emphasise the diversity of communication styles and formats (Figure 10.7). Nevertheless, there are diverse needs even within specific groups of people with impairments, which, again, puts the emphasis on listening to individual people and giving them control. Sally French, as a person with a visual impairment, has found, for example, that she is often presented with large print even though it is the depth, font and colour contrast that are more important to her.
Human relations
Communication is constructed and embedded in rela- tionships between people. The notion of personal rela- tionships can be seen as irrevocably intertwined with
communication. Communication is a means of expressing Figure 10.7 There are many ways to communicate. A
Changing relationships for promoting health
Chapter
10•
involvement in management committees;•
involvement in forums and working parties;•
focus groups;•
public meetings.It is crucial not to rely heavily on any one method as none is perfect and a variety are needed to reach all disa- bled people.
The following principles were derived from the evalua- tion of user involvement in a disabled people’s organisa- tion (Swain et al. 2005). They do not rely on any particular method, but focus on general principles to provide both the foundations for development and a framework for monitoring change through user involvement.
•
There is a clear and absolute requirement that the effective development of user involvement must be generated by and controlled by service users themselves.•
The development of user involvement needs to be seen as embedded in all decision-making within the organisation, including financial and management decision-making at all levels (local, regional and national).•
User involvement is embedded in service users’ lives. It is part of defining the quality of life for service users. Quality of life is determined within the say that people have over their lives, from the day-to-day decisions over basic needs (sleep, eating, toilet, etc.) to the control over their own finances and over the support they receive.•
There is no existing model of user involvement that has been developed that can, or should be, adopted for general usage. Any attempt to do so is more likely to be retrograde than enhance user involvement.•
There is no body of concern that can be seen as ‘user involvement’ that is separate or isolated from all decision-making structures and processes within an organisation – finance, management, etc.•
User involvement in policy-making is crucial. Firstly, service users should be involved in the writing of policy, rather than being simply consulted about drafts of policy statements. Secondly, the least restrictive possible policies and practices arising from legislation need to be implemented. Thirdly, in adopting the least restrictive response policy-making should, as far as possible, be made at a local level, with full user involvement.•
Approaches to user involvement also need to be open, flexible and individual (or client-centred).•
Effective communication is fundamental to user involvement. This includes increased support, communication workers and use of communication equipment at an individual level. It also includes a creative and flexible approach to group meetings, including video conferencing, to open opportunities.Use of inclusive language
Inclusive language reflects the idea that language controls or constructs thinking. Sexism, ageism, homophobia, racism and disablism are framed within the very language we use. This has been characterised and degraded by some people as ‘political correctness’ (PC), often with reference to examples seen as trivial or fatuous (e.g. being criticised for offering black or white coffee). Use of language, however, is not simply about the legitimacy of words or phrases – what we are allowed to say or not say. As Thompson (1998) explains, language is a powerful vehicle within interactions between health and social care profes- sionals and clients. He identifies a number of key issues:
•
jargon: the use of specialised language, creating barriers and mystification, and reinforcing power differences;•
stereotypes: terms used to refer to people that reinforce presumptions, e.g. disabled people as ‘sufferers’;•
stigma: terms that are derogatory and insulting, e.g. ‘mentally handicapped’;•
exclusion: terms that exclude, overlook or marginalise certain groups, e.g. the term ‘Christian name’;•
depersonalisation: terms that are reductionist and dehumanising, e,g, ‘the elderly’, ‘the disabled’ and even ‘CPs’ (to denote people with cerebral palsy). In this light, questions of the use of language go well beyond listing acceptable and unacceptable words to examining ways of thinking that rationalise, legitimise and underline unequal therapist–client power relations.Definition
Service user involvement is a general term that covers service user consultation and collaboration in service policy making, planning, delivery and evaluation. It can involve:
• giving users information about what others have decided;
• consulting users;
• making joint decisions with users;
• users doing things for themselves and taking control. In terms of partnership encompassed within the notion of service user involvement, the literature suggests that methods of involving users of services can take many forms. For instance, Brown (2000) lists the following methods with particular reference to residential care for disabled people: