Everyday interaction between youths with a mild intellectual disability and the attending care professionals examined

In his PhD research, conducted between 2011 and 2017, Michael Kolen examines the everyday interaction between youths with a mild intellectual disability (hereafter: MID) and the attending care professionals. This article provides a summary of the research report, which is in Dutch and can be accessed through http://hdl.handle.net/11439/2932 . You can read  this summary in Dutch and German here,

The issue addressed in this study is that the interaction culture that typifies the care for people with MID (Mans 2004, 2016) offers modes of good care that go unrecognised in contemporary forms of care, which concentrate on prevention and intervention. In the latter, the typically moral aspect of what constitutes good care is relegated to the private domain (Sevenhuijsen 1996, 1998, Vosman & Baart 2008), while this study shows that the everyday interaction between care professionals and youths with MID in fact presents an opportunity to make this moral aspect explicit. As a care ethics consultant and chaplain at Prisma Foundation (Waalwijk, the Netherlands) I was experienced in that interaction, but wanted to single out the moral aspect and study it in detail as it often either is missed in the conceptualisation of care for youngsters with MID or addressed in a rather global manner. This study was inspired by the question with which the original founders of Prisma Foundation in 1904, a Roma-Catholic order of friars called the Broeders Penitenten began with their care for people with intellectual disability: how can people with intellectual disability take part in society and live their lives, with other citizens? This question is still as relevant as ever today, albeit in it a very different social and institutional context. This is particularly so for young people with MID, as they are at risk of falling between the cracks in respect of society. Stichting Prisma has sponsored this research, along with financial support by the Broeders Penitenten and the Konferentie Nederlandse Religieuzen (Assocation of Dutch Religious Orders), in order to make the sector’s own experience-based knowledge regarding everyday community life more available and supportive with respect to the moral questions currently facing the care sector, and particularly the care for people with MID.

Chapter 1

The problem definition of this study is operationalised as a research question into the specific nature and significance of the moral dimension in the everyday interaction between young people with MID and the attending care professionals. The introductory chapter frames this question in a wider cultural and scientific context. The cultural problem of “falling through the cracks” encountered by young people with MID first of all makes clear that this form of care demands a different ethical framework that (a) recognises the complexity and ambiguities involved in the practice of care giving, and that (b) devotes specific attention to dependency and vulnerability. This other ethical framework is partly found in care ethics, which is used in this study as a moral ethnography that gives voice to the three identified moral actors in the everyday interaction. These three actors are: a) the young person with MID, b) the care professional, and c) the institutional context. For the other part, in order to identify what is morally decisive in every day life, I have made use of the critical ideas on life form as developed by German philosopher Rahel Jaeggi (2013) – but that is a matter only dealt with in chapter 4.
In this chapter we juxtapose a sketch of, first, the issues facing young people with MID with, second, everyday social interaction in the context of late modernity (Dorfman 2014). The concept of everydayness as developed by Dorfman helps to recognise the ambivalence between ideals and the reality in the care for people with MID. It also shows how, if that everyday interaction does provide opportunity for this, connections can be made and experiments undertaken, and how room is created for moral meanings to emerge directly from that everydayness.
Third, as regards the moral meanings that we seek in the everyday interaction, we do not apply any grand moral theories but instead choose to take a ‘low ethical perspective’, focusing on what is actually at stake for the different actors, adopting Andrew Sayer’s (2011) focus on ‘concerns’.
The study furthermore reveals that there are three issues at play in the care for people with MID: a) the building of identity by young people with MID, b) the personal commitment of professionals, and c) the legitimacy of care organisations. Chapters 2, 3 and 4 elaborate these issues further with reference to three conceptual ‘lenses’ (Nicolini 2012) to enhance our view and understanding of these issues, namely ‘liminality’ (Chapter 2), ‘public morality’ (Chapter 3), and life forms (Chapter 4). The introductory chapter outlines the relevant scientific debates on identity (Giddens 1999, Kaufmann 2005), professionalism (Kole 2007 & De Ruyter, Van Dartel 2012) and institutionalism (Dubet 2002). A fourth lense that helps refine our focus on everyday interaction is the self-developed ‘underwater screen’ (Chapters 5 & 6), drawing on institutional ethnography (Smith 2006, DeVault 2013). This tool was developed through an analysis of the personal support plans for all 19 respondents, in order to identify in a well-founded manner the institutional influence present in the 19 observation reports.

Chapter 2

In Chapter 2 we address the identity issue for young people with MID by zooming in on the border zone between the professional care context on the one hand and ‘normal living together’ on the other; that is, on the problems associated with ‘falling through the cracks’. To gain a better understanding of this border zone we use the concept of ‘liminality’, derived from ethnography (Cobb 2005; Van Gennep 2005; Turner 2008; Beech 2010). Using this theoretical concept, we develop an initial “lense” with which to identify the significance of the border zone. This reveals, first of all, how society has various systems to subtly exclude certain people. It secondly reveals that the liminal phase offers opportunities for a temporary solidarity (communitas) between people through which new ideas develop as an anti-structure (Turner 2008), running counter to dominant views in society and forming the seed of new social structures. Thirdly, it appears that the liminal phase also offers young people with MID the opportunity to experiment with different versions of themselves, to acknowledge that they cannot fulfil societal demands, and to reflect on the meaningful interactions that they do manage to have (Beech 2010). This makes the liminal phase one in which young people with MID can be guided towards a post-liminal phase through experimentation, acknowledgment and reflection. Viewed through this lense, MID care can be seen as a place of ‘identity building’ or, using Kaufmann’s (2005) words in Chapter 1: an identity forge where identity production can take place.

Chapter 3

This chapter centres on the personal commitment of care professionals as carriers of public morality and on the complexities and ambivalence they encounter in their work. Care professionals are expected to help young people with MID develop active citizenship on the one hand, while being confronted on the other with the fact that these young people cannot fulfil the associated demands. To examine this more closely, we introduce a second lense in this chapter based on the alternative theory by Edyvane (2012) on public morality. He shows how public morality is in itself essentially ambivalent. In his model of public morality, he merges so-called positive with negative morality, resulting in a form of public morality that accommodates both the hope for radical change and the desire to protect everyday reality, but also the fear of evil and preventing wrong-doing. This model is compatible with the fundamentally pluralist character of contemporary society. It also points out the possibilities and the significance of small relational bonds as in the everyday interaction between care professionals and young people with MID, through which public morality is in fact given shape. This connects with the debate on professionalism described in Chapter 1, and specifically the democratic professionalism. In this chapter we therefore define the care professional, being a carrier of public morality, as an expert witness. They are the ones who can repeatedly make actual citizenship visible through the obscure policy jargon. Care professionals help to make communal life possible and can thereby turn the debate on citizenship into a realistic debate.

Chapter 4

Chapter 4 raises the legitimacy issue of care organisations in transition. This transition presupposes certain views on what makes a good society and what makes a good care organisation. In this chapter we point to the everyday interaction between care professionals and young people with MID as an alternative source of moral orientation for care organisations (Tronto 1993; Sevenhuijsen 1996; Barnes; 2012,2015; Laugier 2014a, 2014b). This raises the question regarding the criteria for a successful community life, if these are not derived from (external) policy ideals or professional ethics. To answer this question we introduce a third lense,
adopted from the German philosopher Rahel Jaeggi and her Kritik von Lebensformen (2014). She claims that there are immanent criteria that can serve as an orientation on what’s good. Jaeggi sees life forms as not just a private affair, but as ‘problem-solving entities’ that offer solutions for issues regarding an orderly communal life. From this perspective we can also consider professional MID care as a life form that exists on account of a society that certain young people cannot participate in, due to an intellectual disability that prevents them for fulfilling the associated demands. Jaeggi demonstrates how these problems can transform within certain life forms. The problems do not disappear, but a way of dealing with them is found. The solution dynamic is itself the criterion. A life form is successful if a) it offers a solution to an actual problem; b) it reflects on how the problem arose; and c) it can accommodate the experiences of all stakeholders in seeking a solution together. For care organisations, this yields the following insights: 1) They have a source of knowledge and understanding in-house regarding the question of what makes a good society; and 2) care organisations are a place in society where young people’s voices can be heard and where they can meaningfully show themselves as they are. In short: care organisations are able to create social arrangements in which everyday life can be lived and simultaneously examined. Care organisations are not just bodies that implement policy, but are themselves part of organised society and are hence of a political nature. This connects to the debate on institutionalism introduced in Chapter 1.

Chapter 5 & 6

Chapters 5 and 6 report on our quest for a way to make apparent the invisible institutional influence on everyday interaction. Using an institutional ethnographic research methodology (DeVault 2013, Prodinger & Turner 2013), we developed our underwater screen. In Chapter 5 we describe the development of this analytical tool, and in Chapter 6 we apply it to our own empirical data. This underwater screen forms the fourth looking glass with which we attempt to portray as clearly as possible the everyday interaction and especially the role of the institutional context as a third actor in this interaction. We used institutional ethnography to help develop the underwater screen: this research method aims to identify ‘meanings produced elsewhere’ by analysing institutional texts. As part of our research, we analysed the contents of the personal support plans that all 19 respondents in the empirical survey made available to us. This eventually resulted in a list with POP codes with which to identify institutional influences and to clarify spheres of influence such as organisation, policy and legislation. Based on excerpts from the empirical material, in Chapter 6 we show how the developed tool a) helps make the researcher sensitive to institutional influences, b) can identify the institutional influences, and c) can address these institutional influences. The underwater screen thus enables us to identify institutional influences in the observation reports, to bring these under a common denominator and to demonstrate their intended and actual effects. Using the underwater screen yielded three important insights: first, we see that and how the intended institutional influences and the actual influences do not necessarily concur, and that the one sphere of influence is sometimes eclipsed by another. Second, it appears that certain spaces in a building can be intended to serve a certain purpose, but that the people who live and work there can jointly give it another function and meaning. Finally, we see that professionals must navigate between the various spheres of influence. On the one hand, their own behaviour is subject to these influences and they need to cope with the tensions between the different spheres. On the other hand, in the course of everyday interaction they deliberately choose at specific moments to ignore the rules and to apply new and modified rules.

Chapter 7

In Chapter 7 we present the results of the empirical research in the form of a typology of the everyday interaction between young people with MID and their care professionals. Here we show how, based on the shadowing method, we were able to follow 19 young people with MID for one full day within three different care organisations. These observation reports were then analysed in Atlas.ti through an iterative process of coding, reflection and constant comparison. As regards the analysis of the institutional influences, the underwater screen as described in Chapters 5 and 6 was used. Inspired by the praxeological approach (Schmidt 2012), the final typology is described in terms of a football practice game (training). Sociologist Schmidt uses the metaphor of football to show how participants in a certain practice, by keeping each other’s place on the field in mind and by anticipating possible actions and reactions, interact with each other, sometimes make mistakes and then make a new attempt. This interplay demonstrates clearly what also occurs in everyday interaction. Eventually, by studying series of interactions, we arrived at three types of everyday interaction that are also described using the metaphor of game. The first type is everyday interaction as a ‘broken game’. Here, the interplay between actors is stifled, and the moral dimension is not curated. The actors make their moves mainly inspired by their own interests, without anticipating each other. The second type of interaction is described as a ‘regulated game’, in which the everyday interaction proceeds according to the norms set by the institutional context. In other words, the everyday interaction is played according to the rules of the game. The third type is described as a ‘new game’. In these variants of everyday interaction, what is at stake for all actors is curated and the interplay of actors results in the creation of a new game. Here, the actors together discover new possibilities for good care. To determine whether the everyday interaction is successful, we do not consider individual types but see whether the mix of types that occur in everyday interaction create sufficient room for the three actors to generate – in line with Jaeggi – a solution dynamic that does not necessarily cause problems to disappear, but that does open up possibilities of dealing with any problems.

Chapter 8

In this final chapter we evaluate the empirical and theoretical findings and reflect on the methods used. As regards the care ethics, we show how this research seeks to make a modest contribution a) to its empirical legitimation and b) to a further elaboration of care ethics as a political theory in which the concepts of care and community are brought to bear on each other.
The institutional ethnography we used helped us to develop a suitable analytical tool with which institutional influences could be identified (probably partly) in the observation reports, and specifically helped to critically examine the effects of externally produced meanings on the everyday care practice. We present the conclusions by means of three metaphors. We show that everyday interaction is a ‘finding place’ of identity, where the question ‘do I belong’ naturally emerges in practice. It also turns out to be a ‘work place’ for professionalism, where professionals strive to realise public goods and are expert witnesses for policy makers, society and politics while being rooted in the morally imperfect reality, and strive every day again to realise their professional identity together with the young people, within the given context. Finally, the everyday interaction can be viewed as an ‘incubator’ for new institutions. The care organisations are the ones who create the social arrangements in which young people with MID live. The current transformation of the care sector offers new opportunities. Professional care organisations must now forge new coalitions with other societal parties, including private ventures and commercial parties in addition to fellow care organisations. In our view, this holds out the promise of new institutions that are able to preserve the everyday living together with and by young people with MID. In this study we regularly saw how young people with MID are considered ‘an annoyance’. Our hope and goal is that the results of this study will open up new perspectives on ‘meaningful care’ for young people with MID, care professionals and care institutions, all of whom are operating within actual institutional and systemic realities. The care for people with an intellectual disability has, through its own history, accumulated a wealth of experience-based knowledge in this field which can now become freely available and can contribute to new and other forms of professional care for young people with MID.

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