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Sociology of Health & Illness Vol. 29 No. 5 2007 ISSN 0141–9889, pp. 767–786 doi: 10.1111/j.1467-9566.2007.01015.x Marcus Sociology SHIL © 0141-9889 O 5 29 Learning riginal Blackwell Redley Article disability, ofPublishing Health andcitizenship Darin &Ltd Illness Ltd/Editorial Weinberg and political Board 2007 empowerment Blackwell Oxford, UK Publishing

Learning disability and the limits of liberal citizenship: interactional impediments to political empowerment Marcus Redley1 and Darin Weinberg2 1 2

Section of Developmental Psychiatry, University of Cambridge Department of Sociology, University of Cambridge

Abstract

Recent policy initiatives have moved decisively toward empowering learning disabled citizens, recognising ability over disability, and promoting people’s political empowerment and voice in the design of public services. While laudable and encouraging, these initiatives raise an important question: to what extent can a group of service users, whose very entitlement to state-sponsored assistance is justified by putative intellectual impairment, be empowered according to an exclusively liberal model of citizenship that presumes and requires, as its very defining features, intellectual ability and independence? In this paper we consider this question by means of an ethnographic analysis of an innovative advocacy group: the Parliament for People with Learning Disabilities (PPLD). We first document both an institutional and an interactional preference for clients to speak actively for themselves. We then describe three types of interactional trouble that emerged in the PPLD as obstacles to realising this preference in practice and the strikingly similar remedies that were generated to overcome these troubles. We conclude by discussing the limits of an approach to empowering learning disabled individuals that is cast too exclusively in terms drawn from liberal models of citizenship that prioritise voice over care, security, and wellbeing.

Keywords: disability, empowerment, advocacy, citizenship, interaction, qualitative

Introduction The UK government, stressing both personal rights and contributions to society, has taken a twin-track approach to citizenship. Citizens are urged to be economically independent through work and savings while exercising responsibility on a range of issues including health and education (Lister 2003). For those people seen as at risk of social exclusion, policies have focused on employment, parenting and other performative competencies. In the case of people with a diagnosed learning disability, however, these competencies have to be achieved in the context of life-long dependency and vulnerability. The UK government’s agenda for people with a learning disability was set out in its 2001 White Paper Valuing People: a New Strategy for Learning Disability for the 21st Century. Based upon legal and civil rights, independence, choice, and inclusion, its values can be found behind many recent changes throughout the healthcare and social services. People with learning disabilities now enjoy significantly improved legal protection of their civil and © 2007 The Authors. Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd. Published by Blackwell Publishing Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA

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human rights. They are no longer (formally) subjected to the decisions of others (Department for Constitutional Affairs 2005), but are deemed able to make decisions for themselves (albeit, in some cases, with support). Recent policies – independent living, person-centred planning and direct payments – are orientated towards enhancing their independence and opportunities for choice. Incapacity and dependence are no longer the primary justification behind service design and delivery (Department of Health 2001). Despite the salutary attention to ability and ‘voice’ embodied in these policy initiatives, they nonetheless introduce an incongruity. In short: to what extent can a group of service users, whose very entitlement to state-sponsored assistance is justified by putative intellectual impairment (low IQ and deficits in social functioning), be empowered according to an exclusively liberal model of citizenship1 that presumes and requires, as its very defining features, intellectual ability and independence? This question is not only central to contemporary public policy debates concerning people diagnosed with learning disabilities, but is also fundamentally relevant to contemporary debate in the sociology of learning disability itself. The field is now dominated by studies that demonstrate how ‘learning disability’ can be understood as a contingent social construction rather than an objective personal deficit. These studies also argue that people diagnosed with learning disabilities are often a good deal more able than is usually acknowledged, and criticise the extent to which their disabilities, rather than their abilities, are made the focus of public attention (see Antaki 2001, Goodley 2000, Rapley 2004). In so doing, they implicitly adopt the same liberal model of citizenship found in Valuing People. Consistent with Valuing People, these scholars argue that people diagnosed with learning disabilities are best served by policies designed to remove labels and institutional regimes that deny them their citizenship rights to personal freedom, dignity and voice rather than policies that address their putatively intrinsic intellectual impairments. While we strongly support this turn toward social constructionism in the social scientific literature on learning disability as well as the turn toward recognising people’s abilities, there is a danger in taking this later research initiative too far. To the extent that we overlook the obdurate social reality of intellectual impairment itself, we will inevitably fail to explain why people diagnosed with learning disabilities should actually be entitled to special assistance in the first place (either from the state or from anyone else). Hence, by taking issue with the reality of impairment, the contemporary sociological literature begs the question of why we should be concerned with the ‘special needs’ of learning disabled citizens, and raises the question of whether people diagnosed with learning disabilities are adequately served by an exclusive focus on issues of voice, ability, and independence. In this paper we consider this question by means of an ethnographic analysis of an innovative advocacy group: the Parliament for People with Learning Disabilities (PPLD).2 The PPLD brings together the elected representatives of learning disability service users and the managers and commissioners of these same services. By styling itself as a parliament,3 calling its members ‘Members of Parliament’ (MPs) and ‘Cabinet Ministers,’ and featuring a picture of the Westminster Parliament on its logo, this self-advocacy group, and others like it, advances a powerful symbolic claim to conformity with a liberal model that specifies citizenship essentially in terms of active political participation. This claim is more than merely symbolic insofar as the PPLD’s practical mandate is precisely to integrate service users into the processes of service design and management. As we will show, however, obdurate practical challenges inhibit the full realisation of this mandate in practice. In what follows we briefly review previous research on the self-advocacy movement and contrast extant approaches with our own methodology. We then discuss the PPLD’s objectives and how PPLD meetings are organised. The bulk of the essay is taken up with our © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

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analysis of interactional data collected in the PPLD. We first document both an institutional and an interactional preference for MPs to act as self-advocates in the PPLD, actively participating in group discussions and speaking for themselves. We then describe three distinct varieties of interactional trouble that emerged in the PPLD as obstacles to realising this preference in practice and the strikingly similar remedies that were generated to overcome these interactional troubles. We conclude by discussing how our analysis highlights the limits of an approach to empowering learning disabled individuals that is cast too exclusively in terms drawn from liberal models of citizenship that prioritise voice over care, security, and wellbeing.

Researching self-advocacy in practice The UK government, under the auspices of Valuing People (Department of Health 2001), is actively promoting self-advocacy and has established a National Citizen Advocacy Network specifically for the empowerment of learning disabled citizens. This, as well as the founding of the PPLD itself, represents a wider commitment over the last 15 years or so to move away from strictly representative forms of government to a more active inclusion of citizens themselves in political roles historically confined to state bureaucracies (Marinetto 2003). Rather than relying exclusively on politicians and state appointed experts, this trend toward ‘active citizenship’ has entailed devolving political power to affect a range of policies from state bureaucrats to citizens themselves. Whereas conservatives have favoured the replacement of state services with various forms of self-help, the Labour government has been more inclined to speak in terms of public-private partnerships wherein citizens are given a hand in the design and development of the public services available to them. The mandate of the PPLD, and the many other self-advocacy services now available to those diagnosed with learning disabilities, is precisely this. Yet, for all of the anticipated benefits, Dorothy Atkinson (1999: 41) has suggested that self-advocacy services remain ‘a hodgepodge of local, regional, and national schemes, largely uncoordinated and unregulated, and often relying on untrained and unpaid volunteers’. To date, research in this area has focused on such matters as the ideal attributes people should possess to support selfadvocates (Clegg 2003, Wolfensberger 1977); organisational structures of specific programmes (Crawley 1988a, 1988b, Sutcliffe and Simons 1993, Tsuda and Smith 2004) and the personal experiences of self-advocates (Goodley 2000, Armstrong 2002, Beart et al. 2004). But as recently as 2003, Jan Walmsley and Kelly Johnson still complained: ‘To date there have been no methodologically sophisticated studies of the practice of self-advocacy organisations, or the work of self-advocacy supporters, despite self-advocacy being arguably the most significant development in learning disability in recent years’ (2003: 178–9). It is precisely this gap in the existing literature that we have sought to address in this article by providing the first detailed study of the interactional dynamics of a self-advocacy organisation in practice. Our data were gathered through a combination of ethnographic observation and video recording. The first author attended meetings of the PPLD on three different occasions, meeting individual convenors, and observing all aspects of the day’s proceedings. He systematically gathered written materials and conducted unstructured interviews with the convenors concerning the administrative structure and operation of the programme, as well as its niche within the wider network of services available to people diagnosed with learning disabilities. In addition to this ethnographic component, one meeting of the PPLD was video recorded in its entirety, resulting in four-and-a-half hours of audio-visual data. The © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

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recording was made using a professional crew, including a sound engineer as the acoustics were judged to be a potential problem. Three cameras, two positioned for wide inclusive shots and one for following the particular people currently engaged in conversation, were used. Throughout the recorded meeting cameras and camera crews were in plain sight.4 Our analysis of these materials draws upon techniques derived broadly from institutional ethnography (cf. Gubrium 1992, Silverman 1987), conversation and discourse analysis (see Drew and Heritage 1992, Edwards and Potter 1992), and innovations now being introduced into these fields by researchers using a combination of both audio and visual data (see Heath and Hindmarsh 2002). More particularly, our data have been analysed to document the incarnate practical accomplishment of self-advocacy in the PPLD, the interactional troubles that emerged as a feature of the PPLD’s activities, and the remedies that were applied to overcome these troubles. The institutional ethnographic component of the study consisted in gathering information concerning the institutional structure, the wider social ecological niche of the PPLD, and what we are calling the PPLD’s institutional mandates. We are using the expression ‘institutional mandates’ to indicate that the purposes of the talk we analyse here go beyond the management of interactional exigencies in situ to the fulfilment of more broadly defined goals of the Parliament as an institution. In contrast to some forms of conversation analysis, we have allowed ourselves the freedom to inform our analysis of videotape-recorded interaction with knowledge about the institutional mandates of the PPLD drawn from documents and interview data. As institutional ethnographers, we claim that PPLD talk empirically exhibits not only its responsiveness to proximal interactional cues but its responsiveness to the distal institutional mandates that occasion its occurrence in the first place. We have therefore not hesitated in referencing elements of the institution that are not empirically evident in our videotaped data to support our explanations of those data. As will however be apparent, we also rely a great deal on conversation analytic (CA) insights to structure our analysis of the social dynamics and practical upshot of PPLD talk. Rather than listing these methodological devices in the abstract here, we explicate them in the body of the article as they become relevant to our analysis. We have not followed CA transcription conventions as this level of empirical detail was not necessary to support our analytic claims regarding PPLD talk, and might risk distracting the reader from them.

The research setting The PPLD is made up of 30 service users, along with representatives of day centres, supported living schemes, and social training enterprises. These 30 service users, supported by the PPLD’s three paid staff and its parent organisation (a registered advocacy charity), are elected by their peers to represent their interests in dialogue with the managers and commissioners of local statutory services. The fundamental aims of the PPLD are summarised in its promotional material: Service users can talk to top professionals about important issues; to make the decisionmakers sit up and listen; to make the Valuing People principles a reality. The PPLD meets every two months with the elected service users themselves setting their own agendas with respect to issues they discuss. Meetings are attended not only by the managers and commissioners of learning disability services, known as ‘Decision Makers’, but also by ‘Guests’. These might include, depending on the issue being discussed, managers © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd


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Figure 1 The Red Group

and commissioners of services designed for all local residents (e.g. leisure services), and other professionals and service users who have come specifically because of their interest in the PPLD itself. Meetings of the PPLD are organised as follows: after preliminary welcomes and one-off announcements, MPs, Decision Makers and Guests split off into five groups of roughly 12 people. It is in these groups, supported by staff from the PPLD and/or its parent body that the majority of the day’s discussions occur. These groups work by sub-dividing into ‘pairs’ (at least one MP to one non-MP in each coupling) to discuss the day’s designated theme, and then reassembling as a group for feedback. At the very end of the day a representative from each of the five groups reports on their discussion to the whole parliament. The data excerpts presented below are from one of these groups. Known on the day of the video recording as the ‘Red Group’ its composition and seating plan is described in Figure 1. The theme discussed by the PPLD on that day was ‘abuse and other forms of bullying.’ PPLD is widely known amongst local service users and professionals. As we have indicated, the managers and commissioners of learning disability services regularly attend PPLD meetings as do various other stakeholders depending upon the relevance of PPLD proceedings to their own roles in the service system. However, there are no formal arrangements whereby the PPLD can mandate either specific service providers or the Learning Disability Partnership Board (LDPB), which is the body responsible for inter-agency planning and commissioning of services for people with learning disabilities. What links there are between the PPLD and the Learning Disability Partnership Board (LDPB) occur only as a consequence of overlapping memberships. Four members of the PPLD sit on the LDPB as do three of the commissioners of learning disability services who regularly attend PPLD meetings. Insofar as they lack a genuinely executive function, organisers of the PPLD face the following practical problem: exactly how can they defend the claim to ‘make the Valuing People principles a reality’? How might the PPLD avoid the charge of being no more than © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

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an inconsequential ‘talking shop’, and present the proceedings of its meetings as possessing tangible political value? Available evidence suggests the preferred manner for managing this problem is to characterise the PPLD as an advisory body. This is suggested in the passage quoted above, ‘to make the decision-makers sit up and listen’. The PPLD’s website describes the parliament as ‘a way for people with learning difficulties to have a voice in the way services are planned and run’, and finally the main administrator for the PPLD wrote in the newsletter of the British Institute of Learning Disabilities: The whole aim of the Parliament is to provide an opportunity for people with learning difficulties to engage face-to-face with the people who can make changes. As will be shown, this preference for seeing the PPLD as an advisory body was also exhibited in the interactional details of the PPLD’s proceedings. However, for a variety of reasons that we will describe below, the hope to realise the PPLD as an advisory body has not met with unequivocal success. Our data indicate that while much of the Parliament’s proceedings are in fact taken up with the provision of advice, rather than passing from MPs to service providers, in the interest of changing the design and/or delivery of services, advice more routinely past from service providers to MPs. The body of our analysis is concerned to show both how and why this came to be the case.

The interactional preference for self-advocacy Beyond its exhibition in various textual materials and programmatic statements, the preference to cast the work of PPLD as advisory was also exhibited in the spoken interactions that constituted the routine work of the Parliament. As will be seen, the preference for self-advocacy was interactionally manifest in the normative expectation that MPs themselves be collectively recognised in the Parliament as the parties most entitled to take the floor in discussions. In the following data excerpt, Annie, a learning disabled employee of the PPLD and the Chairperson for the Red Group, initiates the discussion once everyone has resumed their seats following the ‘paired’ discussions. Addressing herself to the whole of the Red Group, she asks: Excerpt 1 Annie [Group Chair]: Could you now tell us what you’ve been talking about in . . . in your pairs? Who wants to start? Dan [MP]: Me. I’ll start off Annie. Annie [Group Chair]: Louise will be writing up for you . . . you again [indistinct] just start. In response to Annie’s open invitation for someone to start feeding back, Dan [MP] self-selects as first speaker. Annie reacts to his self-selection as first speaker only by indicating that Louise will be writing up his remarks and that Dan is welcome to start. Annie exhibits no dis-preference for Dan’s election of himself as first speaker, and thereby tacitly confirms his entitlement to do so. Compare this with the following exchange which occurs later in the same session: Excerpt 2 Annie [Group Chair]: Ok, can we have Margaret and Helen . . . now? Helen [Guest]: ((looking at Margaret)) Do you want to tell them what we talked about? Margaret [MP]: ((nodding)) We talked about lots of different sorts of bullying . . . © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd


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Here, Helen [Guest] responds first to Annie’s invitation to speak. However, rather than selecting herself as respondent to Annie’s question as did Dan above, she invites Masgaret [MP] to respond to the question. Perhaps even more dramatically than in Excerpt 1, this data excerpt conveys a local normative orientation to interaction in this speech exchange system5 that favours MPs as the proper respondents to the Group Chair’s questions. More than merely remaining silent and thereby tacitly honouring this normative convention, Helen speaks up, effectively casting herself in the role of enforcer of this local normative convention. By accepting Helen’s invitation to speak without incident, Margaret also tacitly honours the normative propriety of this invitation. This particular sequence structure was evident in three of the five instances of this turn-taking event we collected. It involved the Group Chair asking for feedback from a ‘pair’ by explicitly naming all members of the ‘pair’, the Decision Maker or Guest responding next in the sequence by overtly conveying responsibility for answering the solicitation to the MP, and the MP, then, in the third turn position, accepting this nomination to take the floor. One final data excerpt will serve to drive home our claim that this preference for selfadvocacy, or MPs speaking for themselves in group discussions, was indeed a routinely recognised and normatively enforced feature of conversation in the Parliament. This excerpt exhibits a ‘negative instance’ (Seale 1999 73–82) insofar as a Decision Maker responds to the Group Chair’s solicitation from his pair not by conveying the floor to the MP in his group but selecting himself as the appropriate respondent to the solicitation. In doing so, however, he conspicuously invokes the prior expressed wishes of the MP in his ‘pair’: Excerpt 3 Annie [Group Chair]: Ok, thanks guys. Last but not least, Robert and Pete. Robert [Decision Maker]: Ok, well I think Pete’s asked me to feed back some of the things he wanted to tell us. Pete told me a little . . . In the foregoing discussion we have demonstrated a local normative preference that is identical with a normative preference basic to self-advocacy and liberal citizenship more generally. MPs were interactionally empowered to act as self-advocates insofar as they were routinely called upon to take the floor and literally speak for themselves in Parliamentary discussions. However, to argue that there was an interactional preference that this norm be honoured is not to say that it was uniformly honoured in practice. As we show in the next section, the local enforcement of this normative expectation also created possibilities for certain kinds of social incompetence to emerge. MPs, rather than Decision Makers or Guests, were routinely found to breach the normative expectation that they take the floor and speak for themselves in Parliamentary discussions. It is to these breaches and the discursive reactions taken to remedy them that the analysis now turns.

Interactional troubles in the accomplishment of self-advocacy MPs were found in breach of the preference for self-advocacy when other participants in parliamentary discussions were unable, for one reason or another, to interpret their behaviour as a locally meaningful contribution to these discussions. We will be arguing that the failure of the PPLD to fulfil its mandate as an advisory body was less the result of macro-structural barriers to the participation of MPs than the result of emergent interactional troubles. In what follows we focus on three distinct ways in which findings of interactional incompetence were made in the specific context of the PPLD.6 MPs were © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

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routinely found discursively deficient in the Parliament when they: (1) spoke inaudibly, (2) failed to speak at all, and (3) spoke inappropriately given the local parameters of a discussion at hand. What will become apparent as each of these troubles is discussed is that the discursive remedies for them that were initiated by the Guests and Decision-Makers were strikingly similar. Each of these kinds of trouble and their subsequent discursive remedy will be discussed in turn. Speaking inaudibly The following excerpt follows on from a short spell of talk from Margaret, who while feeding back to the Red Group had already been asked to ‘speak up’ by group members. Here she is interrupted for a second time by Annie who asks: Excerpt 4 Annie [Group Chair]: Pete [MP]: Helen [Guest]: Robert [Decision Maker]: Helen [Guest]: Margaret [MP]: Helen [Guest]:

Margaret [MP]: Helen [Guest]:

Margaret [MP]: Helen [Guest]:

Annie [Group Chair]: Helen [Guest]:

Can people, sorry Margaret, can people still not hear? ((to Margaret)) Speak up can you? ((to Margaret)) Yeah do you wa . . . it might be helpful if Helen just re-caps for us at the end . . . ((to Margaret)) yes, shall I, yeah do you, shall I, yeah do you mind if I just tell them what we discussed? Um . . . ((nods affirmatively)) Margaret told us she’d asked some of her colleagues wha what instances of bullying they’d had. Ah one had had people shouting, someone shouting at them in the house um and she went and told a member of staff is that right? ((nods affirmatively)) another person while they were at work had had boxes thrown at them [ . . . ] and um they went to speak to a member of staff and reported it and the other person had been slapped is that right? no, had their sandwiches stolen. oh . . . beg your pardon, yes had had their lunch stolen out of their bag. And they spoke to a member of staff and they found a solution to that. All the lunches were given to the driver on the bus and he handed them out in person so that was solved quite quickly wasn’t it? good lots of solutions coming out there. yes err it’s quite a variety of things [ . . . ]

In this excerpt, Annie, Pete, and Robert each display a perception that Margaret had failed to take and hold the floor adequately. Specifically, they each indicate a concern that either they or others in the group could not make out what Margaret was saying. As a remedy for this interactional trouble, Robert suggests that Helen might ‘re-cap at the end’. This proposed remedy continues to honour the normative preference for allowing MPs to hold and keep the floor, but it also very plainly exhibits an incipient loss of faith in the prospect of Margaret competently accomplishing the self-advocacy work for which she was given the floor in the first place. This effort to discursively navigate a path between respecting Margaret’s entitlement to hold the floor, on the one hand, and, on the other, getting the discursive work that had been delegated to her effectively accomplished, is also evident in Helen’s reassertion of Robert’s proposal. However, Helen’s re-assertion of Robert’s proposed © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd


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remedy is conspicuous in leaving out the notion that she ‘recap at the end’ and is, instead, in essence a bid for permission from Margaret to take over immediately. Margaret silently consents to this remedy and promptly yields the floor to Helen. In representing Margaret, Helen periodically seeks confirmation from Margaret for her version of Margaret’s narrative thus continuing, albeit in a more mitigated way, to honour Margaret’s entitlement to speak for herself even after losing the floor. This seeking of confirmation from Margaret conveys Helen’s recognition that, despite taking control of the right to tell the story, that story remains in some sense Margaret’s possession. It remains Margaret’s narrative and hence something over which she remains entitled to exercise some level of editorial control. It is however also evident in this excerpt that Helen, rather than Margaret, has been authorised to formulate the details of the story and, more specifically, to formulate the practical upshot of that story given what we have called the institutional mandates under which talk is taking place. Though we will return to this topic later in the paper, for now it will suffice to mention the fact that Helen has very plainly cast the upshot of Margaret’s story in terms of advice to MPs rather than advice to Guests or Decision Makers. In Helen’s telling of it, Margaret’s story is produced to support the conclusion that a sensible solution to the problem of bullying is for learning disabled service users to tell someone in authority. This upshot is reiterated in the above excerpt no less than three times and is very clearly the focal point of Margaret’s story in Helen’s telling of it. In this section, we have addressed a type of interactional trouble that arose when turns at talk were locally observed to have taken place but were nonetheless heard to have failed to perform communicative work. We call this inaudible speech to highlight that this kind of interactional trouble stems from the persistent incapacity of hearers to find either sufficient volume or clarity in an MP’s verbal behaviour to recognise it as an instance of speech. In the next section we address two related, but distinctly different, types of failure to take and hold the floor: overt refusals to speak and episodes of conspicuous silences. These types of interactional failures are distinguishable from inaudible speech insofar as they do not exhibit incomprehensible speech acts so much as a failure to engage in any kind of speech act at all. Failing to speak The following excerpt picks up from where Excerpt 3 above left off. As will be recalled, this excerpt exhibits a ‘negative instance’ insofar as a Decision Maker responds to the Group Chair’s solicitation from his pair not by conveying the floor to the MP in his group but by selecting himself as the appropriate respondent to the solicitation. He does so, however, via the conspicuous gesture of invoking the prior expressed wishes of the MP in his ‘pair’. As we observed above, this gesture signals Robert’s acknowledgement of the normative expectation that MPs be given the floor. However, as in the case of Helen and Margaret, it nonetheless places Robert in the position of both specifying the details of Pete’s story and indicating the practical upshot of his story given the institutional mandate for the talk: Excerpt 5 Annie [Group Chair]: Ok, thanks guys. Last but not least, Robert and Pete. Robert [Decision Maker]: Ok, well I think Pete’s asked me to feed back some of the things he wanted to tell us. Um Pete told me a little bit about bullying again at school and, a bit like you Ben, Pete was very young and, . . . think it was about eight years old he was saying . . . erm but unfortunately there, there was both sort of verbal abuse there – people being nasty throwing © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

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Pete’s walking frame about but fortunately the staff were quite helpful. Pete also told me about a couple of nasty assaults that he’s been subject to, er one when he was in Bigcity which was not very pleasant and he was never able to to sort of do very much about that whilst he lived in Bigcity. And then one other one since he’s been living in Rural Region where he was able to talk to staff and make something stop. Erm, so there’s quite a difference in being able to talk to somebody whereas the first assault he could only talk to people about it much later [ . . . ] Just as in the case of Helen and Margaret, Robert here casts the upshot of Pete’s story in terms of advice to MPs rather than advice for Guests or Decision Makers. Pete’s story, like Margaret’s, is produced to support the conclusion that a sensible solution to the problem of bullying is for learning disabled service users to tell someone in authority. In this excerpt, the point is made in a slightly more elaborate way insofar as the trials and tribulations of being bullied are described more vividly, and more attention is given to the difficulties that MPs might face in actually following this advice. We would suggest that this attention to Pete’s lived experience of bullying and the difficulties in resolving the problems attendant on it is a product of the responsibility Robert assumes by transgressing the local normative preference that MPs speak for themselves. Assuming responsibility for telling Pete’s story requires of Robert not only that he remain factually faithful to what Pete has told him earlier but also that he exhibit due sympathy for the emotional gravity of this story and hence due respect for Pete as his silent partner and a victim of emotional and physical trauma. Despite these added discursive obligations, Robert nonetheless places the moral up-shot of Pete’s experience – tell someone in authority – at the very centre of his account. In the above excerpt we saw an MP’s outright refusal to assume the floor and a Decision Maker’s efforts to manage that refusal. In the following excerpt the failure to speak is not quite so stark but is nonetheless equally apparent. It begins routinely with Annie as Group Chair soliciting a contribution from Ben and Saul jointly as a pair and Saul, the Decision Maker, inviting Ben, the MP, to take the floor. As will be seen, though, this invitation meets with rather protracted interactional difficulty: Excerpt 6 Annie [Group Chair]: Saul [Decision Maker]: Ben [MP]: Saul [Decision Maker]: Ben [MP]: Saul [Decision Maker]: Ben [MP]: Saul [Decision Maker]:

Ok, can we have Ben and Saul? For sure. Yeah. Ben do you want to discuss what we talked about? Bullying. That’s right. Yeah. Can you remember what things we were . . . we were talking around about? Ben [MP]: um ((4 second pause)) Saul [Decision Maker]: About when you was a young boy you said . . . Ben [MP]: I got bullied in Rissly. Wwe, when I was seven years old. Saul [Decision Maker]: And yours was at school wasn’t it? Ben [MP]: Yep. Saul [Decision Maker]: And can you remember what we talked about that you said? © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd


Ben [MP]: Saul [Decision Ben [MP]: Saul [Decision Ben [MP]: Saul [Decision Ben [MP]: Saul [Decision Ben [MP]: Saul [Decision Ben [MP]:

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Yeah I was . . . Maker]: Who did you go and tell? The teacher. Maker]: And what happened then? The teacher suspended him. Maker]: That’s right. Yeah. Maker]: So it was nice to hear that Ben . . . Yeah. Maker]: . . . knew who to go and tell which was good so he went and told the teachers even at seven so you knew then. Yeah.

Saul’s question, ‘Ben do you want to discuss what we talked about?’ is clearly intended to elicit a ‘discussion’ from Ben: a narrative reconstruction of the conversation they had shared earlier and its relevance to the larger group discussion. However, Ben’s answer to that question, ‘Bullying’, construes it not as an invitation to take the floor, but instead in terms of a question and answer format with which he is probably much more familiar. Following Ben’s answer to his first question, Saul says ‘That’s right’, clearly signalling that the exchange has moved from a simple invitation to take the floor to a form of question and answer sequence often found in the classroom7 (see McHoul 1978, Mehan 1979). Several authors have noted the tendency among people diagnosed with learning disabilities to orient towards questions asked by professionals or in formal settings specifically as tests – that is, as devices for measuring the adequacy of their own knowledge (see Atkinson 1988, Leudar and Fraser 1985, Rapley 2004). This literature provides good grounds to suspect this type of question and answer format might present an all too compelling fallback when MPs struggle to take or hold the floor. Knowing the answers to the questions he is putting to Ben, Saul co-opts his participation in the production of a story designed to be overheard and yielding support to the story’s conclusion, that a sensible solution to the problem of bullying is for learning disabled service users to tell someone in authority. This excerpt provides still more powerful empirical evidence for an inference we have also drawn from earlier data excerpts. Specifically, in place of the self-advocacy function assigned to the Parliament both in its literature and in its normative preference for interactionally empowering MPs, Decision Makers and Guests install a pedagogical function to the Parliament wherein its institutional mandate is held to have been fulfilled to the extent that MPs are themselves held to have been given good advice. When MPs exhibit failures to take or hold the floor, by far the most ubiquitous interactional remedy for these failures is to forsake the notion that MPs ought to be playing a political or advisory role, and to install in its place a language game much more familiar to all parties to these discussions, that of educating MPs themselves. Speaking inappropriately In the following data excerpts we find neither inaudible speech nor a failure to speak but speech that, while abstractly intelligible, is locally assessed as inadequately responsive to the practical requirements of current conversation. Hence, turns at talk that are interactionally responsive insofar as they are manifestly adequate to maintaining the smooth conduct of conversation itself, are nonetheless found inappropriate in light of the more broadly defined goals of the Parliament as an institution. Our analysis suggests that turns at talk, like Ruth’s below, that are neither hearable as moving toward general advice to © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

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service providers nor to service users themselves, present interactional problems in the context of the PPLD insofar as they depart from any recognisable institutional mandate. Such talk is locally interpreted as inappropriate because it threatens to reduce the PPLD to an inconsequential talking shop. It is clearly evident in Excerpt 7 that while Ruth’s turns at talk are both intelligible and responsive to Dominic’s questions, in the end Dominic does not see them as moving the discussion in a direction consistent with the Parliament’s institutional mandate: Excerpt 7 Dominic [Decision Maker]:

Ruth [MP]: Dominic [Decision Maker]: Ruth [MP]: Dominic [Decision Maker]: Ruth [MP]: Dominic [Decision Maker]: Ruth [MP]:

Ruth can you tell people what happened when you told the headmistress of your school that somebody had been bullying you well they sacked matron yeah, yeah . . . yeah they did. They sacked her. so they . . . so they . . . cos what she did she made me stand up and eat me own dinner in front of everyone ((2 second pause)) so Ruth they did something about it didn’t they yeah

The sequence begins with Dominic asking a rather heavily circumscribed question of Ruth which Ruth answers, ‘they sacked the matron’. In replying to her response with ‘yeah, yeah’ Dominic invites Ruth to further elaborate, thereby tacitly conveying that while it is relevant, the sacking of the matron is not the ultimate point to be drawn from this narrative. Ruth complies with Dominic’s invitation to continue speaking not by elaborating but by reiterating ‘yeah, they did. They sacked her’. Dominic seeks to move the discussion in the direction of a more general moral to the story with ‘so they . . . so they’ but is interrupted by Ruth with what is in fact an elaboration on the sacking of the matron but plainly not the elaboration that Dominic was looking for. This can be inferred from both Dominic’s long pause following her description (see Heritage 1984a: 267) and the fact that in his next turn Dominic does not take up anything of Ruth’s description of how she had been bullied (Sacks et al. 1974: 728), and instead decisively identifies the programmatic conclusion to be drawn from her story as a whole (i.e. that if you report bullying something will be done about it). Thus, Dominic manifests a judgement of Ruth’s description of the details of how she had been bullied as inappropriate. This judgement is not predicated on Ruth’s conversational skills as such but upon the nonconformity of the substance of her talk with Dominic’s view of the Parliament’s institutional mandate. Likewise, in the following excerpt, Dan exhibits none of the apparent reticence to speak we saw in Excerpt 6 from Ben. However, his talk can nonetheless be seen to be presenting clear difficulties for Annie, the Group Chair. We suggest these difficulties stem largely from the fact that Dan’s talk conveys little indication as to how it might be interpreted as a meaningful contribution to the shared work of the Parliament. Dan’s talk is neither interpretable as advice to service providers for how they might improve their programmes nor is it hearable as offering MPs themselves tangible solutions to their own problems with bullies. This excerpt begins just after Dan has reported a number of possible responses to bullying including ‘hitting back’: © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd


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Excerpt 8 Annie [Group Chair]: So are you talking about whether um it’s a good idea to hit back yes? Dan [MP]: Um yes but we but we don’t advise it Annie we don’t advise it. Annie [Group Chair]: You don’t advise it. Right. Dan [MP]: don’t it’ll make matters much worse. Annie [Group Chair]: Sorry Dan Dan ((leans forward)) Dan [MP]: It can make things much worse [indistinct] take a risk or not they could hit back twice as hard so it’s not worth taking the risking is it hey Sam [Guest]: ((1 second pause)) we thought that maybe telling someone in authority was a good idea really. If um people are bullied on a bus you could tell the bus driver. Dan [MP]: Yeah ((in breath)) Sam [Guest]: or if it happens in a day centre one of the staff Annie [Group Chair]: so you’re having a little think about who you could tell yesss When Dan begins to elaborate on the inadvisability of hitting back, Annie is apparently unable to detect the practical upshot of Dan’s talk. Rather understandably, Dan interprets Annie’s perfunctory reply, ‘You don’t advise it. Right.’ as an invitation to elaborate on exactly why he does not advise it. However, his elaboration does little to clarify the ambiguity. Annie once again registers her failure to understand Dan’s point. When Dan suggests further that hitting back runs the risk of being hit still harder, his talk becomes even more remotely related to anything that might be hearable as an appropriate solution to the problem of bullying within the context of the Parliament. While avoiding getting hit harder may be a worthy objective in the abstract, Dan’s advice is not heard to offer any programmatic solution to bullying that either service providers or MPs themselves might adopt in future. The Parliament’s mandate to formulate programmatic solutions and thereby avoid the appearance of being ineffectual (or a mere ‘talking shop’) created very specific normative parameters to which Dan’s advice failed to conform. The inappropriateness of Dan’s talk within the context of the Parliament provoked Sam’s appropriation of the floor from Dan. While plainly a non sequitur as it references nothing of Dan’s talk of hitting back, Sam’s advice has the great virtue of offering a recognisable programmatic solution to the problem of bullying and a viable practical upshot to the discussion at hand. Annie affirms Sam’s, rather than Dan’s, advice as the appropriate conclusion to this sequence. Once again we see the interactionally affirmed narrative conclusion is specified not by MPs themselves but by a Guest or Decision Maker, that it is addressed to service users rather than providers, and that it reiterates the project of education over self-advocacy.

Discussion One of the key principles of Valuing People (Department of Health 2001) is that people with intellectual impairments ‘should be fully involved in the decision-making processes that affect their lives’. (para. 4.27). However, Valuing People, and allied documents,8 are largely intended as policy blue prints and by design leave the details of policy implementation to others. There is a burgeoning of consultancy services (see www.peoplefirst.org.uk) and a ‘how to’ literature that discusses organisational structures and considers intellectual impairments as a technical issue that can be minimised under the rubric of © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

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access: jargon-free documents, the simplification of language and ideas, the use of large print and substituting the written word for pictures and audio recordings. Parallel to this rather technical literature, which aims to minimise the consequences of people’s impairments, there is also a more radical and politically ambitious literature focused more broadly on the struggle for social justice (see Oliver 1990, Swain et al. 2003). According to authors of the latter stripe, it is not people’s intrinsic impairments that dis-able them so much as the prejudicial fears and normalising conventions of the able. Putative ‘disabilities’ are cast not as personal problems that our societies have inadequately ameliorated but as wholly manufactured social artefacts, and, hence, best overcome through political struggle rather than rehabilitation. Both of these literatures reflect the very real legacy of exclusion that both physically and mentally disabled people have experienced. However, they too often also reflect a certain anachronism insofar as many scholars and disability activists fail to acknowledge significant changes in the political climate over the last couple of decades (Shakespeare 2005). The passing of the Disability Discrimination Act (Department for Work and Pensions 1995), the establishment of The Disability Rights Commission, and publications like Valuing People and more medically oriented instruments like the WHO’s International Classification of Impairment, Disability and Handicap (1999) make it increasingly untenable to ignore the fact that diagnostic labels like learning disability not only stigmatise but also entitle their recipients to a host of new rights, public services, and social assistance to which non-labelled citizens have no access. There has been an unmistakable movement to politically recognise and give voice to citizens with disabilities that needs to be understood and more fully appreciated. Derrick Armstrong (2002) reports that people labelled as learning disabled are systematically relegated to performing ancillary roles in decision-making processes, consulted but not permitted to make final decisions (see also Aspis 1997). Under these circumstances selfadvocacy only serves to reinforce and legitimate the exclusion and oppression of people labelled as learning disabled. However, he also found something he called ‘unofficial citizenship’ (Armstrong 2002: 342), wherein self-advocates, aware of their limited participation in the formal decision-making process, found informal opportunities to contest their exclusion. Similarly, Dan Goodley (2000) ethnographically documents the discursive abilities of people labelled as having learning difficulties to speak for themselves and the practices of those supporting them that can either assist in their emancipation or oppress them. Goodley criticises what he calls the ‘individual model’ as bad practice because it personalises problems, legitimates established professional expertise and organisational agendas, and assumes that self-advocates are ignorant. It might be argued, from this perspective, that the PPLD is plainly guilty of bad practice. Bullying is not addressed in the PPLD as a collective problem of public policy but is personalised in just the way that Goodley condemns. Such a reading, however, overlooks two important facts: (1) at a macro level, the fact that the political inclusion of MPs was circumscribed by professional authorities and/or bureaucratic constraints does not really distinguish it from the forms of political inclusion available to putatively ‘able’ citizens of modern complex democracies, and (2) at a micro level, MPs were in fact consistently offered the floor and were ostensibly entitled to cast the discussion in whatever way they saw fit. The individualised form that ‘advice’ took in the PPLD followed on from specifically interactional, rather than macro-structural, impediments to political empowerment – that is, MPs’ consistent failures to take and/or hold the floor (let alone initiate policy relevant dialogue). To date, calls for the political empowerment of people with putative learning difficulties have failed to sufficiently clarify exactly what putatively able citizens enjoy in the way of political rights that is systematically denied citizens labelled as learning disabled. Prior to © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd


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the Disability Discrimination Act, The Disability Rights Commission, and Valuing People, the answer to this question was clear. Those labelled disabled lacked any real political right to speak on their own behalf regarding their social service needs. This is no longer so obviously the case. While one often hears complaints like those articulated by Armstrong above, which disparage the fact that self-advocacy has hitherto been constrained by service providers and the social service bureaucracy itself, it is not clear how this reflects any more constraint than is exercised over democratic political participation more generally. All NGOs are subject to these kinds of constraints. Contemporary social movements do not demand unilateral authority over the public policies governing their lives; consumer advocacy organisations do not demand unilateral control over the market, nor do health rights organisations demand to dictate unilaterally proper health policy. In each of these cases, self-advocates ask only for a seat at the table and fully expect to be joined there by professional experts, bureaucrats, and other stake-holders. As was indicated earlier, the PPLD embodies broader changes in the nature of government that are also evident in other forums designed to facilitate an interface and partnership between active citizens and the state.9 However, it manifestly fell far short of achieving the level of political empowerment achieved by other varieties of citizen activists or even achieving its own explicit mandate ‘[t]o make the decision-makers sit up and listen’. While it may be debated how genuinely influential these forms of public participation actually are in effecting policy changes, it remains the case that they do in fact, at the very least, succeed in remaining spaces in which citizens formulate interventions into public policy rather than becoming themselves the recipients of advice. This difference between the PPLD and other nominally similar political settings requires explanation. While the extant literature suggests several candidate explanations as to why an organisational setting like the PPLD might fail to facilitate the political empowerment of people diagnosed with learning disabilities, it is our contention that each of these candidate explanations proves unconvincing when confronted with the empirical details of the PPLD in action. Drawing upon the work of those like Fyson et al. (2004), one might hypothesise that the PPLD failed to remain focused on public policy because MPs experienced a lack of access to key resources necessary for political action. This, however, is not borne out by the facts. Neither access to buildings, nor meetings, nor relevant information was an issue for MPs. Meetings of the PPLD took place in an accessible building, travel arrangements and costs were covered by the PPLD and all MPs as well as attending pre-Parliament meetings received information and minutes in formats deliberately designed to be accessible for them. Drawing upon the work of writers like Armstrong and Goodley, we might hypothesise that the PPLD failed to remain focused on public policy because government policy makers and service providers are reticent to share power with their clients. This hypothesis is also manifestly inconsistent with the empirical reality of the PPLD. Not only was the PPLD designed explicitly (at a macro level) to give clients greater voice in the design of services, but local service providers were also active and enthusiastic participants in the PPLD, and consistently honoured the interactional right of MPs (at a micro level) to take the floor. Finally, one might wish to suggest, following the work of Rapley (2004) and others, that the form of discourse in place at the PPLD systematically disempowered MPs and empowered Guests and Decision Makers to dictate the course of dialogue in this setting. While we have argued that obdurate discursive requirements were in place at the PPLD and certainly served to constrain the talk of participants, these requirements were decidedly not in place for the purpose of securing for the service providers a privileged position of power over MPs. Instead, they were imposed to ensure that MPs were themselves honoured as the primary spokespeople in the setting and that talk in the PPLD © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

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yielded some sort of tangible generalisable solutions to the problems raised in discussion and thereby avoided the appearance of being ineffectual (or a mere ‘talking shop’). As an alternative to these explanations, we have argued that one fundamental source of the failure of the PPLD to remain focused on formulating public policy interventions stemmed not from extant exclusionary public policies nor other macro-structural barriers10 but from the micro level of Parliamentary interaction itself – that is, from the manifest interactional difficulties MPs exhibited in taking and holding the floor. Mark Rapley (2004) has done more than most to promote the value of detailed analysis of conversational interaction to our understanding of learning disability. However, his analyses have focused on finding hitherto unappreciated conversational competences among people diagnosed with learning disabilities and how and why ‘psy’ professionals, due to a prior assumption of incompetence, consistently fail to see competence amongst people diagnosed as learning disabled.11 He conspicuously abstains from analysing the conversational manifestation of interactional incompetence in conversations involving putatively learning disabled speakers. While we believe it is critically important to continue to acknowledge and highlight the many competences exhibited by people diagnosed with learning disabilities, we think there is also a very serious political danger in overlooking their occasioned conversational incompetencies. While Rapley claims no wish to ‘deny that some persons do . . . require a substantial degree of assistance with managing the affairs of everyday life’ (2004: 205), he offers absolutely no empirical grounds to support the claim that these people actually require and deserve special assistance. The political danger in presuming the only source of interactional trouble with learning disabled people stems from the incapacities of others to recognise their competence is that, taken to the extreme, it undermines any basis for the claim that citizens with learning disabilities are entitled to special assistance. Likewise, there is an equal danger in presuming that findings of incompetence are always and necessarily oppressive. If we are to claim that people diagnosed with disabilities possess special needs that entitle them to special assistance (from the state or otherwise), it is indispensable that we are able to offer empirical grounds for inferring the specific nature of those special needs. We would suggest that one direction in which research in this area ought to proceed is to look at disability not in the contextually indiscriminate terms provided by medicine or the ‘psy’ professions, but as manifest in the details of social interaction as it is variously conducted across a wide range of social contexts. This approach holds out the promise of a much more nuanced linkage of specific social disabilities and the types of social assistance they warrant. Unlike the interactions Rapley studied, interaction in the PPLD exhibited a clear normative preference for finding interactional competence among MPs and only strayed from that preference when interactional troubles arose. Non-disabled participants in the PPLD bore very little in the way of evident a priori commitments to understanding MPs’ behaviour as symptomatic of learning disability and were quite obviously able to differentiate between evidence of ability and evidence of disability in situ (see also Weinberg 1997, 2005, Redley 2005). Our own analysis improves upon Rapley’s analysis of interactional materials insofar as it acknowledges and seeks to explain the artful capacities of ‘psy’ professionals, and others in the helping professions, to routinely distinguish between interactional evidence of clients’ social abilities and their apparent social disabilities in situ (and to design their interventions with clients accordingly). Recent policy initiatives aimed to empower people with learning disabilities have erred in too thoroughly embracing strictly liberal models of citizenship that prioritise issues pertaining to voice and participation over issues pertaining to care, security, and wellbeing on the assumption that if properly implemented the former will ensure the latter. While we © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd


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certainly wish to stay the course with respect to the empowering initiatives outlined in documents like Valuing People and the newly passed Mental Capacity Act, we have argued that these liberal democratic initiatives must not be allowed to eclipse our recognition that learning disabled citizens need and deserve special assistance in the first place. Empirical analysis of the interactional impediments to political empowerment put into relief the rather daunting reality that there are limits to the liberal model of democracy that, if ignored, could bring dire consequences for those among us who are sometimes ill-prepared to speak on our own behalf no matter the degree of facilitation we receive (see also Benhabib 1992, Gilligan 1982). Our analysis has shown that the PPLD, though explicitly designed to honour the liberal democratic principles of political voice and participation, seriously faltered in its efforts to realise these principles in practice. Armed only with the dichotomous choice between a purely liberal and, dare we say it, utopian, model of political empowerment, on the one hand, and the institutionally entrenched regimes of modest pedagogy and paternalism on the other, when the liberal model proved interactionally unfeasible, it became all too easy, which is not to say inevitable, for participants to slip back into old habits. If this failure is to be overcome, we must become more agile than were PPLD participants in navigating between these rather polar policy extremes. This is, no doubt, a complex and multi-faceted mandate that cannot be fulfilled by any one particular type of intervention, let alone any one particular type of social research. However, we would insist that the detailed analysis of interaction has a particularly important role to play. If what is necessary is an approach to social research supple enough to distinguish between ability and disability in all their various interactional incarnations and sufficiently empirically robust to warrant the linkage of these findings with specific approaches to both advocacy and care, then close attention to the details of interaction must certainly be a necessary if not wholly sufficient approach. Mentally able participants in PPLD failed to sustain anything remotely resembling the political mandate for which the PPLD was formed. We have argued that this was not the product of a simple lack of political will but that it stemmed in significant part from interactional impediments to empowerment that were encountered in situ. The problem, as we see it, is that participants in the PPLD were inadequately equipped to navigate these interactional impediments if and when they arose in such a way as to maintain focus on the specifically political, as opposed to pedagogical, project at hand. By illuminating the specific contours of autonomy and dependence in interaction, a fine-grained approach to the analysis of interaction in such settings can equip participants to take a much more reflective and nuanced approach to the empowerment of learning disabled citizens without thereby losing sight of their often very real and serious needs and vulnerabilities. Address for correspondence: Marcus Redley, Section of Developmental Psychiatry, University of Cambridge, Douglas House, Trumpington Road, Cambridge CB2 8AH e-mail: [email protected]

Acknowledgements We would like to thank members and staff at the Parliament for People with Learning Disabilities for their support of, and interest in, this research. The research was funded by grants from the Health Foundation and the Faculty of Education at University of Cambridge. We are also grateful to Dr Isabel Clare, Professor Tony Holland and Professor Bryan Turner, for their keen interest in the research and discussion of many of the topics raised in the paper. © 2007 The Authors Journal compilation © 2007 Foundation for the Sociology of Health & Illness/Blackwell Publishing Ltd

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Notes 1

2 3

4

5

6

7

8

The expressions ‘liberal citizenship’ and ‘liberal model of citizenship’ are used in this essay to denote a conception of the individual grounded in various classical political freedoms or liberties. This includes first and foremost the right to self-determination but has been further articulated through other political freedoms including: freedom of movement, due process, freedom of speech, association, assembly, education, and religion. The key point is that this model attends to citizenship rights almost exclusively in terms of strictly political freedoms and gives comparatively very little regard to insuring the individual’s social and economic security and/or wellbeing as such. The names of the organisation as well as those of all participants have been changed to ensure their anonymity. The PPLD’s main administrator explained to us that the decision to refer to the forum as a parliament was based, quite simply, on the political ‘gravitas’ associated with the word parliament; and the fact that people with learning disabilities had been elected by their peers to represent them in meetings with service commissioners and managers. Ethical approval for the research was sought from the local NHS Research Ethics Committee. The Committee ruled that the research raised no specific ethical issues since it occurred in a semi-public arena and did not require PPLD participants to comment on the data collected. There was therefore no requirement to undergo a full ethical review as defined by the Central Office for Research Ethics Committees. Participant consent to video record a meeting of the PPLD was sought from the PPLD itself. At a meeting of the PPLD prior to the one video taped, the aims and methodology of the research were explained to participants. Arrangements were then put in place by PPLD staff for learning disabled participants with objections or reservations about the research to raise these with staff. No objections were made and the research was subsequently assumed to have the approval of PPLD participants. It is also worth mentioning that PPLD meetings are routinely videotaped. At the sitting of the PPLD for which permission to record was sought, a film crew sponsored by the Learning Disability Partnership was shooting footage for a promotional film. At the sitting of the PPLD that we videotaped another crew was also present (assisting one learning disabled participant to make a video diary). The expression ‘speech exchange system’ was coined by Sacks, Schegloff, and Jefferson (1974) to indicate relatively coherent sets of rules for organising conversational turn taking and turn design that participants in conversation themselves recognise and enforce among each other. We do not mean to suggest that this list is exhaustive only that it serves to demonstrate both that and how various practical challenges arose in interactions between learning disabled MPs and those seeking to empower them in the PPLD. Heritage (1984b) notes that under ordinary circumstances, questions are usually understood to elicit information the questioner does not possess. Hence, one often finds that question and answer sequences will proceed with a question in the first position, an answer in the second, and in the third position what Heritage calls a ‘change of state token’ which signals the questioner’s acquisition of a new piece of information. However, in certain institutional contexts like classrooms and courtrooms, change of state tokens are conspicuously absent in the third position. This indicates that in these contexts questions do not serve to elicit information that is not known to the questioner but to elicit answers that display such things as the adequacy of students’ knowledge or the articulation of known information for ratified over-hearers (Levinson 1979). Saul’s utterance of ‘That’s right’ above indicates that this exchange has moved into a question and answer format very much akin to those found in classrooms insofar as Saul does not confirm receipt of new information but assesses the validity of Ben’s answer. As the sequence proceeds we see Saul begin to ask questions akin to those one might see in a courtroom insofar as these questions are asked to elicit Ben’s cooperation in producing information Saul already knows for an audience of ratified over-hearers. Keys to Partnership: Working Together to Make a Difference in Peoples’ Lives (Department of Health 2002); Making Change Happen. The Governments Annual Report on Learning Disability

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(Department of Health 2003) and Partnership Board Report (Valuing People Support Team 2002). 9 Examples of such advocacy initiatives would be POST the Public Dialogue on Science and Technology, INVOLVE, Promoting public involvement in NHS, public health and social care research and the Housing Corporation’s requirement that Housing Associations work together with their residents. 10 One reviewer questioned the absence of references to race, class, or gender in our analysis. While we are quite persuaded by the literature that suggests these variables influence the diagnosis, access to services, and quality of services received by people with learning disabilities, we simply could find no evidence of their influence on the course of interaction in the Parliament. This might be explained by any number of factors (e.g. perhaps these factors exert their influence at the level of access rather than interaction; perhaps their influence has been minimised through past efforts to raise consciousness regarding these sources of discrimination, bias and/or insensitivity), but we prefer not to speculate. Suffice to say that race, class, and gender did not arise as explicit topics of conversation and bore no evident influence on the course of the interactions we observed in the Parliament. 11 Rapley argues that ‘psy’ professionals tend to assume the omnirelevance of the diagnostic categories of learning disability that constitute their own disciplinary raison d’etre and therefore systematically overlook or misunderstand elements of interaction that do not conform to their a priori theoretical commitments.

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