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Jul 5, 2010 - Richard Brunner, June Mitchell, Roseann Maguire, Kirsten Stalker. Department of Educational and Professional Studies, University of.
Disabled parents’ involvement in their children’s education: implications for policy and for models of mental distress

Richard Brunner, June Mitchell, Roseann Maguire, Kirsten Stalker

Department of Educational and Professional Studies, University of Strathclyde

Social Policy Association Annual Conference, 5 July 2010.

Secondary analysis of data, Richard Brunner, as MSc Social Research candidate, Glasgow Caledonian University

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Abstract This paper uses secondary analysis of qualitative data to enhance understanding of the position of mental distress within the social model of disability, a theme of ongoing debate in disability studies and the sociology of mental distress.

Using secondary analysis of qualitative data the paper explores how the concepts used in two prominent social models of disability and mental distress (Thomas 2007 and Beresford 2004) compare to the concepts used by two parents with mental distress when discussing their everyday lived experience of being involved with their children’s education. By comparing the concepts that make up each parent’s model with the concepts employed by Beresford and Thomas, the paper sheds light on how the two established models engage with mental distress.

The study finds that some concepts in both established models are meaningful to the two empirical cases, but that neither model fully encapsulates the parents’ models. Some extensions to concepts used in the established models are suggested by the analysis. Concepts also emerge from the parents’ models that do not feature at all in the two prominent models. Together these findings suggest directions for social model development and for further research.

The paper also assesses the benefits and constraints of using a secondary qualitative data analysis methodology, including critical reflection on its application to this study. The paper is therefore not only a timely addition to ongoing debate in disability studies and the sociology of mental distress, but also makes a methodological contribution to the field.

Key words: mental distress, disabled parents, secondary analysis of qualitative data, social model of disability.

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1. Introduction There is ongoing academic debate about the position of mental distress1 within the social model of disability. There are two ways in which this tension has expressed itself. First, in disability studies where refined social models of disability (e.g. Thomas 2007) and new social models of madness and distress (e.g. Beresford 2004) have attempted in different ways to develop or transform the social model in order to better encompass the diversity of experiences of impairment. Second, in contradictions that have arisen when social policies such as the Disability Discrimination Act (1995 and 2005), influenced by the social model, are applied to mental distress.

Peter Beresford (2004) and Carol Thomas (2007) are leading authors in the field whose models engage with this debate. Both note that models should engage with lived experience (Beresford 2004: 218; 2009: 57; Thomas 2007: 180), with limited evidence that this has occurred for their models. This paper analyses how Beresford and Thomas’ models aid understanding of everyday lived experience of mental distress, and how examples of everyday lived experience of mental distress inform their models in turn.

People with mental distress have varying levels of engagement with the psychiatric system. Most have very little (Rankin 2005: 13-18). There is an identified need for research that engages with everyday interactions and mental distress outwith the psychiatric system; to understand the ‘complexity, subtlety and diversity of disabling barriers’ in the context of ‘wider life experiences’ (Mulvany 2001: 44), or as Hughes puts it, to explore ‘the concrete world of lived experience and the everyday world of mundane social relationships’ (2004: 66). This study achieves this by eliciting findings on how people with mental distress, as parents, rather than as mental health service users, relate to an ordinary institution, and how that ordinary institution 1

The term ‘mental distress’ is used throughout this paper. Firstly because, alongside the term ‘service user/survivor’ it is one of

the terms favoured by the movement of users/survivors of psychiatric services (Beresford 2002: 582; Ferguson 2003: 78; debate between Perkins (1999) and Rose (2001)). Second, each participant in the study may or may not have specific experience of psychiatric services, although both have self-defined experiences of mental distress, and the broader term is likely to therefore capture the breadth of experiences of respondents more accurately.

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relates to them. It then uses these empirical findings to deepen understanding of the two models of disability and mental distress.

In 2008-09 a team from the University of Strathclyde, including this researcher, interviewed disabled parents for a study that explored their involvement in their children’s education (Brunner et al 2009a). A self-selecting sample included parents with mental distress who described their everyday interactions with their children’s schools. As part of their descriptions, they used language that evoked concepts of barriers, attitudes, impairments and disability: concepts also found in social models of disability.

This paper re-analyses the transcripts of interviews with a purposive sample of two parents with mental distress who took part in the education study. Both parents are female, of similar age and with two children. One of the parents identifies as being regularly hospitalised in relation to her mental distress; the other parent does not.

The secondary analysis uses specified elements of grounded theory and ethnography (Charmaz and Mitchell, 2001) to induce, with more depth than was possible in the primary study, the implicit and explicit concepts used by each parent when talking about the relationship between their mental distress and their involvement in their children’s education. Coding and rich narratives are used to distinguish boundaries, conditionalities and comparisons in the transcripts in order to ‘move grounded theory works towards establishing causality and prediction’ (Charmaz and Mitchell 2001: 170).

By re-analysing parents’ descriptions of an everyday experience, the paper is able to explore data of an oblique and subtle character. This is distinguishable from direct data which might be collected for primary research into this topic. By analysing two transcripts using one method, the subtle differences between the concepts used by the parents in these everyday interactions also emerge.

The emerging concepts for each parent are placed together to construct each parent’s model of disability or mental distress in this particular context. The parents’

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models then empirically inform the models of disability or mental distress used by Thomas and Beresford, achieving theoretical generalisation.

The paper makes a timely addition to academic debate in disability studies. This includes suggestions for future research and an appraisal of the use of secondary data analysis in this context.

2. The significance of models and the rationale for testing them empirically Models ‘provide an overall framework for viewing reality … they tell us what reality is like and the basic elements it contains (‘ontology’) and what is the nature and status of knowledge (‘epistemology’).’ (2005: 97-98). Silverman suggests here that models both assist in understanding the empirical world, and they frame that understanding. Models and their associated concepts therefore have the power to change the frame of reference through which a social issue or social group is viewed. For Silverman, models and their associated concepts may not be ‘proved’ or ‘disproved’, but they can be judged by their usefulness (2001: Chapter 1). This begs the question of usefulness to whom.

The way in which issues related to mental distress are understood are profoundly affected by the model used (Tyrer and Steinberg 2006: passim). For Barnes and Mercer, in the context of disability, a model is:

‘not a substitute for social theory … but should be judged on its capacity to stimulate a more comprehensive social theory (explanations and understandings) of disability and to facilitate socio-political changes that enhance the life chances of disabled people.’ (2010: 33-34).

So one role for models is to act as a bridge between the empirical world and theoretical development (Joas and Knobl 2009: Chapter 1). The way in which the model frames a social issue or social group will impact on theory, which in turn helps 5

society to explain and understand the position of that social group. Barnes and Shardlow identify a gap here in relation to mental distress:

‘’Whilst the ideas of Szasz, Laing and others associated with anti-psychiatry provided an important challenge to the medical model of mental illness … those ideas have not been developed into an alternative model (equivalent to the social model of disability) which can provide the basis for both understanding the origin and nature of distress and provide enabling and empowering assistance to those experiencing such distress.’ (1996: 128-129)

Instead the power of the social model of disability encompassed mental distress, with imperfect consequences for policy, noted in 4, below, and from which disability studies is beginning to emerge, as in 5 below.

Barnes and Shardlow (1996: 129) call for more empirical work to draw on the experiences of people with mental distress to contribute to a ‘sociology of mental health’. This paper contributes to this by enhancing the empirical base of two prominent sociological models of disability and mental distress.

3. Why empirical testing of models makes a policy difference Barnes and Mercer (2010: 36) note the ‘striking’ impact of the social model of disability on social policy. Beresford notes the ways in which joint recognition in social policy has strengthened shared aspects of identity between disabled people and ‘survivors’ (2004: 221). One of the most high profile examples of such a policy change is the Disability Discrimination Act (DDA) (1995 and 2005) which uses both social model and medical model concepts.

Section 1 of the Disability Discrimination Act 1995 defines a disability as ‘a physical or mental impairment which has a substantial and long term adverse impact on a 6

person’s normal day to day activities’. This is a ‘classic’ medical model approach, focusing on a deficit in the individual. On the other hand, Part 4 of the DDA 1995 states that public authorities must make ‘anticipatory reasonable adjustments’, meaning that authorities should always anticipate the general requirements of people with a wide range of impairments to ensure that disabled people are not placed at a substantial disadvantage. This is social model-influenced policy, with the focus on removal of barriers. The 2005 Act removed the 1995 Act requirement that mental impairment must be ‘clinically well-recognised’ in order to benefit from its provisions, reducing one medicalising dimension. It also placed a new Disability Equality Duty on public authorities, including schools, to promote the rights of disabled people.

However, despite the fact that the DDA creates an entitlement to equal rights and protection for all impairments, including mental distress, the policy and practice impact of the DDA 1995 (Thornicroft 2006: 70-1; 246) and, tentatively, the DDA 2005 (Ferrie et al: 25, 80), have predominantly been in relation to physical impairments.

This is important for this study for two reasons. One, mental distress is incorporated into law and policy alongside all other impairments. This allows policy makers to claim that people with mental distress have legal protection and equality before the law. Second, the empirical reality suggests that for people with mental distress, realworld policy and practice changes are happening more slowly than for people with physical impairments. This results in people with mental distress being both ‘incorporated’ and ‘second class’, both included and excluded.

An explanation for this may be because whilst people with mental distress have never easily fitted into the social model of disability (Beresford and Wallcraft 1997: 67; Thomas 2007: 77-78), they have been included in the DDA, which exists as a partial response to the social model, non-problematically. This contradiction demonstrates the importance of congruence between models (in this case the social model of disability), the range of social groups to whom they apply, and their codification into policy. Namely that models are empirically tested. By empirically testing the compatibility between the concepts and models used by parents with 7

mental distress with concepts used in two models that stem from the ‘classic’ social model of disability this paper makes a contribution to this area.

4. The interplay between the social model of disability and mental distress ‘the social model [of disability] is not without its critics, and there have been an increasing number of people who have argued that the model is not as all embracing as it might be.’ (Watson 2010: 3)

This section reviews the literature through purposive selection of relevant papers that define the features of the sociological interplay between the social model of disability and mental distress.

The social model of disability provides a very clear example of how a sociological model can affect the way that social reality is viewed, previously exemplified in relation to the DDA. The essence of the social model distinguishes between ‘impairment’, meaning a loss or limitation of physical, sensory, cognitive or communication function, and ‘disability’, meaning the material and social barriers that exclude people with impairments from the mainstream (Oliver 1990; Swain et al 2004).

The dominant early understanding of the social model of disability held that disability stems from a range of material and social barriers, irrespective of type of impairment (Oliver 2004: 11; Barnes and Mercer 2010: 30). However, subsequent debate has argued that greater attention be paid to the implications of living with specific impairments (Morris 1991; Thomas 1999; Hughes and Paterson 1997; Shakespeare and Watson 2001) and to personal experience (Morris 1991; Thomas 1999; Hughes 2002; Shakespeare 2006). There is also debate over the physical/psychological or apparent/non-apparent nature of impairment (Phillips 2006; Thomas 2007: 131-2).

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The ‘fit’ between mental distress and the social model of disability has featured in this debate (Busfield 2001; Barnes and Mercer 2010: 35-36). Beresford has argued (2004) that the social model has barely penetrated the mental health field, for example in not engaging with issues such as deviancy and dissent. He suggests (2002) that a ‘social model of madness and distress’ would both draw on and transform the social model of disability.

Barnes and Shardlow note that, in contrast to movements of disabled people, ‘there is little evidence that the mental health user movement bases its strategies on a ‘social model of mental illness’ comparable with the social model of disability.’ (1996: 121). For them the antipsychiatry movement articulated by Szaz, Laing and others has not developed into a model which could ‘provide the basis for both understanding the origin and nature of distress and provid(ing) enabling and empowering assistance to those experiences of distress’ (1996: 129). They suggest that the relativistic approach of this movement was intellectually and professionallydriven, not engaging with user groups, thus lacking an embeddedness in the experience of users, a critique with which Beresford concurs (2004: 215). This helps to explain how the social model of disability, coming from a root of user activism (UPIAS 1976), has embedded itself more strongly.

Similarly, Mulvany explains the benefits of using what she terms ‘the social approach to disability’ (2001: 44) to better identify social barriers that may restrict access to citizenship for people with mental distress (2001: 42). She identifies gaps in the literature in relation to sociological understandings of mental distress. First, a need to explore the ‘complexity, subtlety and diversity of disabling barriers’ (2001: 44). Second, to explore ‘the social location of the individual and their perceptions of the significance of their mental health problems in terms of their wider life experiences’ (2001: 44). She constrains her approach to people with ‘serious mental disorders’, distinguished from ‘milder mental health problems’ (2001: 40). This diagnostic criterion seems unnecessary to her approach. The questions that she raises are potentially valid for a wide spectrum of people with mental distress.

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In contrast to Mulvany, Busfield sets out the historical evidence for the ‘social framing’ (2001: 5) to which mental distress has been the subject, an implied critique of Mulvany’s diagnostic turn. She (2001: 12) identifies a need for ‘careful, theoretically informed empirical work’ (2001: 12) in relation to the sociology of mental distress, alongside a need for ‘fruitful’ sociological work on ‘the epistemological and ontological assumptions on which sociological work on mental disorder is grounded.’ (2001: 12). She follows Mulvany in emphasising the need for exploration of the specific gap that seems to exist between the social model of disability and the lived experience of mental distress.

So, tensions exist between social models of disability and mental distress, and there are calls in the literature for more subtle, empirical research in relation to mental distress. This paper informs both of these gaps through the empirical development of models and comparison with two existing prominent models.

5. Methodology Secondary analysis of qualitative data has the potential to be a powerful means of understanding sociological models. Robust sociological points may be made in disability studies, for example by using a social model framework to re-analyse primary data gathered using non-social model approaches. It can be argued that Oliver in his seminal work (1990: 7-8) used secondary analysis in just this way to reinterpret questions asked in the OPCS Survey of disabled adults, with profound impact.

a. The primary study and selection of data for secondary analysis

A team from the University of Strathclyde, including this researcher, conducted research in 2008/09 funded by the CfBT Educational Trust to explore the involvement of disabled parents in their children’s education.

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The aims of the study were to examine UK policy and research on disabled parents’ involvement in their children’s education; to explore disabled parents’ experiences of involvement with a focus on good practice; and to identify factors which help promote good professional practice in this area.

The research methods included twenty-four in-depth interviews with self-defined ‘disabled parents’ with good experiences of involvement in their children’s education. This included parents with sensory impairments, mobility impairments, learning disabilities, and four parents with mental distress. The data was analysed, alongside the findings of interviews with educational professionals, with the aim of citing good practice by schools. Resultant guidance for schools was published (Brunner et al 2009a).

The findings suggested that there is a case for targeted policy to provide an equal opportunity for disabled parents to be involved with their children’s education. The findings also indicated that some of the factors that support parents with mental distress in being involved in their children’s education may be qualitatively different from the factors that support parents with other impairments (Brunner et al 2009b). These included issues related to stigma, disclosure and dilemmas in asking for support. This further suggests that barriers experienced by people with mental distress may be distinctive from barriers that affect people with other impairments.

Two of the four transcripts from this study of interviews with parents with mental distress were purposively selected for re-analysis in order to induce the concepts and models of disability or mental distress used by each. Analysis of two transcripts holds three advantages. First, using one method for analysing two transcripts allows the subtle differences between the concepts used by the parents in this everyday life experience to emerge (Mulvany 2001: 44). Second, it allows for comparison of the models that emerge from each parent. Third, it enables informed reflection on the strengths and weaknesses of the methodology being used.

Secondary analysis of the two transcripts aimed to understand the model of disability or mental distress held by these parents. To achieve this, a contrasting analytical 11

framework to that applied to the primary study was used. This achieved three distinctive outcomes that demonstrate the insights to be gained from using a different secondary analytical approach to the same dataset.

First, the primary research placed the views of parents in a policy context. It also incorporated the views of professionals interviewed for the study. The findings were presented in a way that was orientated to be of practical use to schools aiming to improve the involvement of disabled parents. By re-analysing the transcripts for the purposes of understanding the implied and expressed concepts and models used by the parents, a different set of concepts emerge than were found in the primary study.

Second, by focusing on a sub-sample of parents from one self-identified ‘group’ (parents with mental distress) this study enables analysis of the data in more depth than the resources of the primary study allowed, providing an opportunity for subtler and deeper understandings to emerge.

Third, the primary study used a broad literature review with a focus on policy. The secondary analysis uses literature with a focus on sociological models of disability or mental distress. This re-location allows the data to be analysed for the purposes of making a distinctive academic contribution rather than a distinctive policy contribution.

The two transcripts are of interviews with female parents, aged 35 to 44, each with two children. One parent has been hospitalised in relation to her mental distress on average twice a year for the past five years. There is no evidence that the other parent has been hospitalised in relation to her mental distress. I conducted one interview, my colleague undertook the second.

Through re-analysis of these transcripts a specific character of data about the everyday lived experience of people with mental distress emerges; how the two 12

parents with mental distress, as parents, relate to the people and institutions involved with their children’s education, and how these people and institutions relate back to them. By re-analysing transcripts of interviews aimed at eliciting data for a different primary purpose, the paper is able to explore data of a more oblique and subtle character than a primary study which might aim to understand models of disability or mental distress by asking direct questions about barriers, impairments and attitudes.

b. Method for re-analysing the transcripts: grounded theory and ethnography

The analytical method is to follow Charmaz and Mitchell (2001) who combine elements of ethnography with elements of grounded theory.

Charmaz and Mitchell demonstrate through examples how ‘grounded theory techniques can sharpen the analytic edge and theoretical sophistication of ethnographic research’, whilst acknowledging that there are tensions – though not irreconcilable – between the two approaches (2001: 161).

They combine grounded theory and ethnography to aim for a ‘constructivist’ interpretation of grounded theory, one which takes account of the dialogical and coproducing concepts of research, and the subjective position of research participants. This has a strong fit with modern ethnography (Geertz 1988: passim). It also has resonance with the experience of carrying out the primary study, where the interviews were strongly guided by the interviewees. Within the broad category of ‘good experiences of involvement in their children’s education’, interviewees could identify any examples of significance to them.

An ethnographic approach to the data is used in which rich descriptions are firstly drawn from the transcripts, to maintain the parents’ overarching narratives. Coding, from grounded theory, induces concepts used by each parent, which are synthesised into a model for each parent. This approach therefore enables both a narrative and a thematic analysis.

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This paper is explicit about which grounded theory approach and techniques are used. Charmaz and Mitchell note that ‘all variants’ (2001:160) of the grounded theory approach include: 1. Simultaneous data collection and analysis 2. Pursuit of emergent themes through early data analysis 3. Discovery of basic social processes within the data 4. Inductive construction of abstract categories that explain and synthesise these processes 5. Integration of categories into a theoretical framework that specifies causes, conditions and consequences of the process(es).

In this paper, element one is not undertaken as the data was collected in the past, a clear limitation of this methodology. Elements two to five are undertaken. Elements four and five stop at the induction of concepts, the ‘building blocks of theory’ (Strauss and Corbin 1998, in Bryman 2008: 544), rather than categories. Firstly, concepts form the models that satisfy the aims of this study. Second, categories operate at a higher level of abstraction than concepts (Bryman 2008: 416; 544) and are given confidence by theoretical saturation, a technique outwith the limits of this study due the method of re-using data collected in the past. Further research could be conducted aiming for theoretical saturation, with the fuller analysis, and conclusions that category-forming implies.

This study uses several grounded theory techniques. Coding is a core technique and these are induced from the parents’ transcripts, rather than being deduced from preconceived hypotheses. Initial coding (Charmaz, cited in Bryman 2008: 543) is line-by-line from the two transcripts. Focused coding (Charmaz and Mitchell: 167) then integrates and synthesises the initial codes into more abstract and substantive concepts, emphasising the codes ‘which make the most analytic sense to categorize your data incisively and completely’ (Charmaz, cited in Bryman 2008: 543). This data complements the ‘thick descriptions’ (Geertz 1973) of each transcript. This counterbalances the constraint of analysing codes ‘acontextually’ (Charmaz and Mitchell: 166).

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The grounded theory technique of comparison both within and across the sample is also used to explore the situations, language used, incidents, and types of event (Charmaz and Mitchell: 165) that emerge for each parent from the initial coding and the thick descriptions.

The enmeshing of ethnography and grounded theory therefore aims to enhance the internal validity (Lincoln and Guba 1985 in Bryman 2008: 34) of the findings. The transparency of the methodology enhances the ability to assess reliability.

c. Method Each transcript was read carefully twice. The thick descriptions were written for each parent from these readings. Each transcript was then converted into a table. Column one contained the transcript, column two Initial Code and column three Focused Code. The transcripts were read line-by-line and Initial Codes were inserted in column two where data in the transcript referred to issues that related to aspects of how each parent’s lived experience of mental distress emerged in even the most oblique way: the ‘basic social processes’ (Charmaz and Mitchell 2001).

These data were then reflected upon in order to build higher order focused codes in column three. These acted as putative memos (Bryman 2008: 547) that aimed to name a concept that would encapsulate the initial codes, and start to explain and synthesise the data with increased rigour. A sample page of a transcript with coding columns is at Appendix 1.

Further reflection and contextualisation was then undertaken as part of the writing up. This aimed to further distinguish the boundaries, conditionalities and comparisons that ‘move grounded theory works towards establishing causality and prediction’ (Charmaz and Mitchell 2001: 170).

d. Ethical procedures

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Informed consent was received from the two participants, the Chair of University of Strathclyde Ethics Committee where the primary study was undertaken, the Council for British Teachers Educational Trust who funded the primary study, and from Glasgow Caledonian University Law and Social Sciences Ethics Committee who approved the secondary analysis.

6. Beresford and Thomas’ models of disability or mental distress Peter Beresford (1997 and 2004) has been the prime progenitor for developing a distinctive ‘social model of madness and distress’. Carol Thomas (1999 and 2007) has been amongst several disability theorists who have attempted to re-frame the social model of disability to apply more accurately to the diversity of lived experiences of disability, which may or may not include mental distress (2007: 131). She continues to develop her ‘social relational model of disability’.

Beresford’s model has developed over time (e.g. Beresford and Wallcraft 1997: 84). This paper uses his clearly expressed 2004 model for analysis:

‘First there is an interest among service users/survivors in a social model which is located within a framework of the social model of disability, but which would also have transformatory implications for the social model of disability itself. It would highlight both issues of personal experience and social oppression. … the discussion demands consideration of the socially constructed nature of ‘impairment’. Such a model would also have to take account of the strong sense that many survivors have that their processing in the psychiatric system is related not only to them being seen as defective but also frequently dissident, non-conformist and different in their values from dominant societal values (Plumb 1994, 1999). These are all issues that require further discussion among mental health service users/survivors.’ (2004: 218).

Beresford’s concepts and model are both part of and distinct from the social model of disability. Some elements are common or comparable such as the context of social 16

oppression, and being seen as ‘defective’. Other elements are distinct, such as dissidence and non-conformism. The concepts used by Beresford are summarised in Table 1, below.

As with Beresford, Carol Thomas’ model has developed over time (e.g. Thomas 1999). Her ‘social relational model of disability’ retains the structural barriers that form the basis of the social model of disability (Oliver 1990). This paper analyses concepts from her most recent full discussion (Thomas 2007). These are as follows: •

Impairments exist and ‘may be life-long or acquired, ‘physical’ or ‘mental’’ (2007: 14).



Impairment effects refer to ‘restrictions of bodily activity and behaviour that are directly attributable to bodily variations designated ‘impairments’ rather than to those imposed upon people because they have designated impairments.’ (2007: 136; Thomas’ emphases).



Disablism is ‘a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional wellbeing’ (2007: 73). Thomas uses disablism as a concept rather than ‘disability’ in order to draw comparisons with racism, sexism and other identity-based discriminations. She notes that impairments themselves may be affected ‘in problematic ways’ (2007: 73) by the impact of psycho-emotional disablism, (intended or non-intended hurtful words or actions, or denigrating images, limiting who the impaired person can be). Influenced by Hughes and Paterson (1997) she conceptualises psychoemotional disablism as being ‘fully embodied’ (2007: 152) – not only operating through mental pathways (her position in 2004: 25), but potentially having physical effects too. She adds that social barriers ‘out there’ (2007: 73) also place limits on what people can do. This is also part of disablism.

Thomas notes that the above concepts are contingent: ‘in any ‘real’ social setting, impairments, impairment effects and disablism are thoroughly intermeshed with the

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social conditions that bring them into being and give them meaning’ (2007: 137). This means that the boundaries between them are in a ‘dynamic relationship’ (2007: 137).

Thomas also engages with the experiences of non-apparent impairments (e.g. epilepsy) in relation to oppression and disablism (2007: 170-177). This takes her model a step towards a potential (re-) integration of mental distress, as an ostensibly non-apparent impairment, into the narrative of the social model.

Thus Thomas adds several dimensions to the social model of disability. To the established concept of structural barriers she adds oppressive behaviours towards people with impairments. She brings impairment effects into the model, and she engages with the tension between apparent and non-apparent impairments. The potential application of this model to people with mental distress is clear.

Thomas’ (2007) model and Beresford’s (2004) model are summarised in Table 1:

Table 1 Thomas: social relational model of

Beresford: social model of madness

disability (2007)

and distress (2004)

Impairments exist.

The model is located within a framework of the social model of disability, but

Impairment effects are restrictions of

would also transform the social model of

bodily activity and behaviour that are

disability.

directly attributable to impairment. Personal experience exists. Disablism is a combination of a. social barriers, and b. the socially engendered

Social oppression exists.

undermining of psycho-emotional wellbeing. In terms of barriers, it affects

The socially constructed nature of

what impaired people can do; psycho-

‘impairment’ needs to be considered.

emotionally it affects who impaired people can be.

Survivors may be seen by society and

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Psycho-emotional disablism may affect

the psychiatric system as defective.

impairments themselves. Survivors may also be seen by society Impairment, impairment effects and

and the psychiatric system as dissident,

disablism are in a ‘dynamic relationship’

non-conformist and different in their

and can’t simply be separated. There is

values from dominant societal values.

fluidity.

The fact that both Beresford and Thomas are models in continuing progress reflects the fluid character of academic debate in the field at present.

So far Beresford and Thomas’ models have had limited application to empirical data about people with mental distress. Examples include Reeve (2006) in relation to Thomas, and Stalker et al (2005) in relation to both authors. Stalker et al aimed to understand ‘personality disorder’ using Beresford and Thomas’ models. Interviewing people diagnosed with personality disorder, they found that their accounts were compatible with Beresford’s (2002) critique of the medical model, including the diagnosis being equated with dangerousness, the individualisation of distress, and the prevalence of disadvantage and discrimination. They conclude that ‘the interaction between the private/emotional and the social/structural dimensions of people’s lives should be integral to a social model of health and madness’ (2005: 371).

In relation to the concepts of Thomas, they found that people diagnosed with personality disorder faced ‘parallel oppressions manifest at various levels’, equated to psycho-emotional disablism (2005: 371). Their interviewees experienced impairment effects: emotional pain and distress that restricted what they could do and become. They conclude that Thomas’ model may bring useful insights but suggest that it is not clear how well her model might fill the gap in the ‘established’ social model of disability in relation to mental distress. 19

Their paper demonstrates that empirical exploration of concepts can aid understanding of models and that models can inform experience. However the extent to which concepts proposed by either Beresford or Thomas were not satisfied, or even were contradicted, by the empirical findings is not made explicit in the paper. The present paper tackles this. It also engages with more up-to-date models by the two authors, not available to Stalker et al.

7. The two parents’ models of disability or mental distress The data for each parent with mental distress (Parent K and Parent S) was interpreted and analysed using the rich descriptions and elements of grounded theory to induce the basic social processes within the data. Concepts were then constructed that explain and synthesise these processes. The concepts were than integrated into tentative models that specify causes, conditions and consequences of the processes.

In brief, Parent K in her interview explains that her mental distress exists beyond the context of the schools. Its symptoms affect her (‘anxieties’ and related ‘seizures’). Her 17-year old is in mainstream secondary school and her 16-year old has recently moved into special education due to the difficulty that mainstream school had in coping with her symptoms of autism. K had been asking for this move for several years as she felt that staff in the mainstream school were not trained in working with autism, and her daughter’s behaviour continually resulted in her being excluded from school. As a result, K kept having to attend meetings with the school. K is able to contrast the institutional and professional behaviours of staff in the two schools towards her, especially in meetings, and to talk about the impact of these behaviours on her own mental distress. She also talks about how her mental distress is dealt with within her family.

In her interview, Parent S explains that she has been hospitalised on average twice a year for the past few years due to a ‘poorly managed’ bipolar disorder that she has 20

not formally disclosed to the school. She has been impressed with the way that her children’s school provide flexible general support and additional specific academic and emotional support for her children, especially when extra help has been needed whilst she has been hospitalised. She volunteers in the school for three hours a week and she finds the flexibility of the school around this also very supportive. In order to volunteer she needed to disclose her mental distress to the head teacher which was a dilemma. Fear of individuals discovering the existence of her mental distress is a stress factor for S, although she suggests that she can look like an ‘archetypal type of person who just walked out of a psychiatric unit ‘. She started to have undiagnosed bipolar episodes when she was at school and is concerned that students receive better information and support than she received in the 1980s.

Table 2 summarises the two parents’ models of disability or mental distress.

Table 2 Parent K

Parent S

Impairment exists.

Impairment exists.

Symptoms exist and are not

Impairment effects are unpleasant.

pleasant, conceptualised as impairment effects.

Whilst impairment is ‘fixed’, impairment effects are ‘fluid’. They change through life

Impairment effects are to some

dependent on external factors.

degree in a causal relationship with the actions of professionals.

School professionals through their practices

Professionals have an indirect

can act inclusively to reduce, but not remove,

negative psychosocial effect or an

barriers that may otherwise cause stress,

indirect positive psychosocial effect

even without knowledge of the impairment

on K’s impairment effects both within

(indirect positive psychosocial effect).

meetings and outwith meetings. These behaviours may be

Individual professionals can reduce the fear

inadvertent. Where negative, this is

of discovery and disclosure by having good

comparable to indirect disability

attitudes and building trust (indirect positive

discrimination.

psychosocial effect).

21

There is fluidity to K’s overall experience of mental distress. Her

Socially conditioned negative psychosocial

impairment effects are affected by

effects, however inadvertent, also exist,

the behaviours – direct and indirect,

leading to fear of prejudice. These may also

positive and negative - of

apply to other stigmatised impairments, or

professionals at the school and her

wider identities.

own family. This leads to a need to control the Stigmatisation within the family is

boundaries of who has information about a

qualitatively different, taking the form

mental impairment.

of direct negative psychosocial effects.

Mental distress is not simply a non-apparent impairment. It can become apparent. This

Validation of K’s mental distress by

creates interactions with socially conditioned

the state helps to reduce direct

negative psychosocial effects and the need

negative psychosocial effects within

to control the boundaries of knowledge.

the family. This could equally be the case for other stigmatised

Past police involvement constrains present

impairments.

choices, resulting in institutionalised social oppression. Mental distress is distinct from other impairments/disabilities in this regard.

Despite there being many differences between the lived experiences of each parent in being involved with their children’s education, and in relation to hospitalisation, several similar concepts emerged that contribute to each parent’s model. These include impairment, impairment effects, fluidity and psychosocial effects. Alongside these are concepts that are unique to each parent’s model, such as validation by the state (Parent K), and control (Parent S).

Limitations of the methodology need to be noted. There seem to be subtle differences between the ‘similar’ concepts for each parent, but the retrospective use of transcripts of interviews gained for a different purpose means that issues of emergent interest to the secondary analysis were not explored in-depth in the primary interviews. Achieving theoretical saturation (Bryman 2008: 416) using a 22

different methodology would establish and distinguish these emerging concepts more clearly. A return to the field could be used to deepen understanding of any of these emerging concepts, for example in relation to understanding differences between family and professional attitudes, or the conceptual significance of current freedoms being constrained due to being Sectioned in the past. This is for further study.

8. Findings The parents’ models (Table 2) contain concepts that have strong associations with concepts used in Beresford and Thomas’ models (Table 1). There are also several ways in which the parents’ models inform the established models.

For both parents, impairment exists as a real phenomenon, as it does in Thomas’ model.

Impairment effects also exist as in Thomas’ model. These are unpleasant for both parents. For both parents these are directly attributable to impairment, as Thomas’ model suggests. In addition, both parents also suggest that impairment effects are worsened by psycho-emotional disablism, a relationship which Thomas’ model also conceptualises. This suggests that Thomas’ concepts are helpful for understanding the experiences of the parents. One hypothesis for this finding is the psychoemotional character of mental distress. For a model of disability to apply to physical impairment, it may be logical for psycho-emotional impacts to be conceptually separated from impairment effects. But for mental distress, the two may need to be more strongly linked due to the psycho-emotional character of the impairment itself. This suggests a possible direction for further research into understanding Thomas’ model in order to deepen its empirical relationship with mental distress.

The parents also indicate new directions for Thomas’ concept of disablism. Firstly they show that disablism can be indirect (i.e. have a disproportionately negative impact) and inadvertent, comparable to indirect disability discrimination. The concepts of indirect negative psychosocial effects and socially conditioned negative 23

psychosocial effects suggest adaptations to Thomas’ concept of disablism that may ground it more strongly for mental distress.

Second they show that ‘disablism’ can also be positive. This happens in two ways: direct positive psychosocial effects and indirect positive psychosocial effects. This challenges the assumption in Thomas’ model that responses to impairment are only oppressive. Direct positive psychosocial effects could be termed ‘anti-disablism’, perhaps comparable to anti-racism or anti-sexism. These provide an opening for further research to better establish these concepts.

Third, they show that the context for people with mental distress is oppressive, which mirrors Thomas’ disablism. The social ‘fixity’ of disablism towards mental distress suggests that both direct and indirect positive psychosocial effects cannot eradicate these oppressive structures. Socially conditioned negative psychosocial effects create a highly oppressive structure, in particular for Parent S. This finding speaks to both Thomas and Beresford as it suggests a depth to the oppression faced by people with mental distress that models may need to encompass. This may benefit from comparative research into the depth of oppression faced by other impairments.

Fourth, linked to the above two findings, the parents showed that whilst direct and indirect positive psychosocial effects can only reduce, not remove, disablism’s negative impact, the parents do notice the difference these positive acts make. For their models, these acts were significant. This further embeds the suggestion that models explore both the positive dimensions and the negative structural context in order to achieve relevance to the lived experience of people with mental distress.

Fifth, Parent K sees a difference between how disablism works within the family and how it works through professionals. It is more direct through the family. Again this may provide a useful bifurcation to consider in the conceptualisation of Thomas’ disablism and its relationship to mental distress.

Together these findings may take the concept of disablism in a direction that holds greater embeddedness for mental distress.

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Finally in relation to Thomas, she emphasises the fluidity and dynamism between impairment and disablism. Both parents’ models also contain fluidity, but without sufficient data to be conclusive, a constraint of the methodology. It may be that for people with mental distress fluidity is a helpful concept to pursue in order to understand its dimensions and conceptual significance. Dimensions may include fluidity of impairment effects versus fixity of impairment, fluidity over time or across context, and comparability of fluidity for people with mental distress with that for people with other impairments.

In relation to Beresford, his concepts of survivors being seen as ‘defective’ and ‘socially oppressed’ strongly fit with both parents’ models, even considering the above positive psychosocial effects. One parent is questioned in various contexts about her parental decision-making; another is in fear of professionals judging her competence. Beresford’s two concepts fit very strongly with Thomas’ concept of disablism, which suggests a useful ‘bridge’ between their two models in relation to mental distress. The evidence from the parents suggests that both authors’ concepts still do not fully capture important positive dimensions of experience.

Although impairment does objectively exist for both parents, Beresford’s ‘socially constructed nature of impairment’ does have meaning if it is interpreted to include impairment effects. These, for both parents, are affected by the behaviours and attitudes of other people, or socially conditioned negative psychosocial effects that leave Parent S constantly in fear of negative judgement. This suggests that clarifications to Beresford’s concept would aid understanding and explanation.

Beresford’s concepts of dissidence, non-conformism and difference in values do not feature strongly in the two parents’ models. This may be due to the methodology, or to the unique experiences of the parents in this qualitative study. It does not invalidate the concepts.

There are further dimensions of the parents’ experiences that are not included in either established model. The role of the state in making a ‘judgement’ of people with mental distress was significant for both parents. One felt that the state validated her impairment, reducing psycho-emotional disablism; the other parent was oppressed 25

by the state when applying to be a school volunteer. The state has a distinctive role for people with mental distress and this evidence suggests that their relationship with the state may be ambivalent, or may hold very different extremes. This suggests a helpful dimension for further research as models of disability are developed to better capture the empirical experiences of people with mental distress.

For Parent S the concept of control was powerful. Further research may again determine whether this is a helpful concept in creating models that are meaningful for mental distress, including exploring whether this may be distinctive to mental distress, or whether it may similarly apply to other impairments.

Finally, Parent S suggested that her impairment was not simply non-apparent. Her evidence suggests a reification of stigma associated with mental distress. She is identifying with and engaging with a stigmatised concept of what it means to be mentally distressed. Consideration of the implications of this may help to bring the models of disability and models of mental distress together (as referred to by Thomas 2007: 78, with reference to Beresford) and once again may prove a fruitful line for future work on where these two established models meet.

This analysis demonstrates that some concepts in both prominent models are meaningful to the two empirical cases. Neither established model fully encapsulates the parents’ models. Some concepts are helpful, but limited, suggesting ways forward for research and model development, and ultimately theoretical development. Some established concepts did not feature at all for the two parents, which may be due to weaknesses in the concepts, the unique character of the specific cases analysed, or the methodology used. Concepts emerged from both parents that did not feature in either established model, and which may prove fruitful for further development of the two models or as stimuli for further research in the field.

26

9. Discussion Mulvany (2001) identified a need for exploration of the specific gap that seems to exist between the social model of disability and the lived experience of mental distress. This paper has pursued this theme using a grounded theory and ethnomethodological approach. The models of disability and mental distress of the two parents in relation to their everyday experiences of involvement in their children’s education have been compared to two prominent models of disability or mental distress. Differences and commonalities in the implied or expressed concepts that constitute each parent’s model of disability or mental distress have been identified. This has enabled some understanding of how the models of disability or mental distress expressed by the parents compare and contrast with established models, and has suggested directions for future research.

The paper has addressed gaps in the literature. It has explored the ‘complexity, subtlety and diversity of disabling barriers’ (Mulvany 2001: 44). Through its focus on everyday experiences in relation to schools it has aimed to enhance understanding of one ‘social location of the individual and their perceptions of the significance of their mental health problems in terms of their wider life experiences’ (2001: 44). It has perhaps shown what may be the ‘remarkable’ in the ‘mundane’ experiences of everyday life, away from psychiatric services (Silverman 2007: 16-18).

Mulvany’s call for ‘fruitful’ sociological work on ‘the epistemological and ontological assumptions on which sociological work on mental disorder is grounded.’ (2001: 12) has been addressed through the choice of methodology, and through the analytical work done to enable the existing models to be critiqued. Together these have aimed to shed some light on how people with mental distress might be included in social models of disability. The study has achieved this in a transparent way, which can be replicated in other contexts.

The methodology held weaknesses. The data from both parents was sometimes ambiguous, and whilst concepts were induced with transparency and care, balancing 27

the rich descriptions with line-by-line analysis, the weakness of the primary study not ‘pressing’ certain questions of interest to the secondary analysis was a constraint. The veracity of the theoretical generalisations made from the data shall be judged by the reader. Parent K was also harder to be conclusive about, as this researcher had personally conducted only the Parent S interview, leading to greater confidence in interpretation.

The paper has demonstrated that using secondary analysis can elicit necessary qualitative data to develop sufficient concepts for application to established models. The extent to which grounded theory techniques were used also proved sufficient for inducing concepts that allowed corroboration, attenuation and critique of concepts contained in the two established models. The ethic of transparency means that the methodology can be replicated using different empirical examples applied to the same prominent models. The paper has found that concepts stemming from two prominent social models of disability and mental distress do hold meaning for the parents’ lives in this everyday context. But it also suggests that they are limited in aiding understanding. Neither model fully encompassed either parent’s experience. The parents also had experiences in relation to the social relations of their mental distress that were beyond the concepts expressed in the two models. This paper has suggested several ways in which concepts held by Beresford and Thomas might be developed in the light of these findings. Through that, progress may be made towards more firmly establishing the place of mental distress in the social model of disability.

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Appendix 1 Transcript Parent S: sample RB: OK, OK and you said that you didn’t disclose your mental health issue to the school at first and we were talking there about the open door policy you know I know disclosure isn't something that’s easy at all and it isn't something that’s just done you know it’s often done in stages. R:

It is.

RB:

So can you, would it be all right for you to tell me about the process of you disclosing it to the school?

R:

How I did it. Well I, obviously both my children are at school now and my husband said would you like to go back to work more frequently and I said I don’t think so [laughs] so I was wanting to do something with my time and I was actually volunteering with the NHS on mental health issues but there’d been some, there had been some changes in staffing and the work wasn’t coming through with the NHS as it had been doing so I said right, I’ll do something else instead, so I chose to work at the school. Now when you do voluntary work at the school you have to have your background checked by the police and I’ve had a number of Section 136s where the police can pick you up and that obviously if the police have been informed they have the right to go and remove you from a public place then I was worried that that might show up on the record. So although I’d applied to go and work in the voluntary arena with the school I was aware that this might come up in my background check so I thought it would be prudent to actually tell the school up front that they might see this on my background check beforehand. So it’s only the headmaster who knows about it and I sat down and I discussed it with him and he was incredibly like oh that doesn’t bother me you know I’ve got family who have depression and this and that and the other. I thought oh right, you might not know all the details [laughs] but I was incredibly content with the way he handled it because I have told people in the past and I’ve regretted it because I’ve thought you didn’t handle that like I thought you would [laughs], now what are you thinking!

RB:

I see.

Initial Code

Parent been compulsorily sectioned several times. Caused her anxiety that if she volunteered for the school this might be discovered. She is forced to make a choice whether a. to volunteer at all, b. to hope section not discovered, or c. to disclose MD in advance. This dilemma would not have been an issue for another ‘disability’ – involvement with police (compulsion) due to impairment is distinctive to MD. So, being on section in past has consequences for her world/choices now. Despite good attitudes of Head -

Focused Code

Stress due to sectioning possibly being discovered – stigmatised position (are section 136s ever ‘spent’ as per criminal record?)

Past section 136 constrains present choices – distinct from other impairments/disabil ities: MD distinctivity.

Depth of stigma /

33

R: So I’m always cautious and I rarely tell people who don’t need to know but if somebody’s close I will tell them and maybe one day I’ll tell the teacher who I’m working with but I don’t, until I understand how they feel about some of the topics I wouldn’t want them to inadvertently feel that I wasn’t capable of doing what I do do because of a mental health diagnosis.

anti-stigmatic / prodiversity response parent still not disclosing ‘all’ to him. Explained by previous stigmatic attitudes by people whom the person thought they could trust. So, past stigma affects present life choices, as past Section affects present disclosure choices. Caution towards disclosure not only toward Head but universally (‘always’). Fear of negative capability/competen cy judgement due to ‘diagnosis’ i.e. fear of real-world impact of stigma. ‘Inadvertently’ suggests that the person would not be deliberately stigmatising.

unpredictability of response in past makes it not safe to disclose (may be same for any stigmatised impairment (eg HIV).

Capability judgementalism may apply to other impairments (in different ways?) Inadvertent stigmatisation, suggests that stigma affects us all.

34