Ireland presents an exceptional case of instability in social and macroeconomic conditions that is valuable for social science investigation. Irish people have experienced both unprecedented social and economic decline following recession in 2008, and the prosperity of the Celtic Tiger economy barely a few years before (Barry & Conroy 2012; Nolan & Maitre 2017). Ireland was the first EU country to be officially declared in recession in 2008 and the second EU country to endure a structural adjustment programme imposed by the International Monetary Fund (IMF), the European Central Bank (ECB), and the European Union (EU) (Allen 2009; Barry & Conroy 2012). Following recession there were difficult realities to come. Precipitous national debt, a banking crisis, soaring unemployment rates coupled with declining real incomes, and drastic cuts to public expenditure were among them (Nolan & Maitre 2017). Emergent also was a comprehensive sphere of statistical data on the equality impacts of recession in Ireland (Flynn 2017a). Here, it became apparent that children had experienced particular socio-economic disadvantage (Flynn 2017a; UNICEF 2013). UNICEF (2013), for instance, provided a comparative data analysis of 41 Organisation for Economic Co-operation and Development (OECD countries) demonstrating that Ireland was ranked 37th out of 41 countries on relative increases in child poverty, with Lithuania immediately ahead, Croatia behind, and Iceland in 41st (most negative) position. National longitudinal research found that children’s economic vulnerability post-recession was a ‘pervasive phenomenon’ (Watson et al. 2014: 9). Additionally, both income poverty and material deprivation rates were increased for children more than for adults, both prior to (2004) and following the recession (2012) (Nolan & Maitre 2017; Watson et al. 2014). Flynn (2017) outlines that, in this context, it was already established that socio-economic disadvantage is more pronounced for children with intellectual disability than their non-disabled peers, as they are more likely to fall into poverty and be unable to gain release from its effects (Emerson et al. 2010).
The current paper reports on the findings of research from Ireland that contributed otherwise absent qualitative insights to illuminate the meaning of existing statistical indicators. It did so with regard to the lives of young people with intellectual disability and their families, where baseline qualitative research was lacking (Flynn 2011; Flynn 2017a). A classic application of a Biographical Narrative Interpretative Method (BNIM) developed by Tom Wengraf (2001) was one approach that the study took. It is the findings arising from the BNIM that this paper refers to. Here, psycho-social and socio-biographic narrative accounts (Chamberlayne, Rustin & Wengraf 2002; Wengraf 2001) of Breandan, Aoife, and Siobhan (pseudonyms) are presented. These accounts offer in-depth narrative reconstructions of lived experience following the most significant period of economic recession in Ireland since the great depression of the 1930s (Flynn 2017a). Irish disability advocates claim that austerity policies have been detrimental to children and adults with disability in Ireland as they have not been prioritised in the Irish Government’s reactive strategy to recession (DFI 2010; II, IAA & DSI 2014). In this context, BNIM is taken up as a psycho-societal methodology because, as Wengraf (2010) articulates, BNIM can capture contemporary subjective attempts to make sense of regimes of neoliberal capitalism and associated crises.
The paper proceeds as follows: First, the article explains its theoretical and epistemological approach. Themes drawn out from the literature are then presented: the profile of children with intellectual disability in Ireland and provision and policy for children with intellectual disability both prior to and following economic recession. After this, the study’s methodology is explained, followed by a section clarifying remaining characteristics of the study, such as sampling. The cases of Breandan, Aoife, and Siobhan are presented, followed by a concluding discussion of the implications of findings for wider knowledge.
The theoretical and epistemological approach taken is an affirmative non-tragedy model (French & Swain 2000), situated within an overarching Critical Disability Studies (CDS) perspective. CDS as an approach is concerned with undermining disableism and contesting biological conceptualisations of disability better associated with the traditional medical model of disability and sustaining biological essentialism (Flynn & McGregor 2017; Goodley 2013; Shildrick 2012). It is trans-disciplinary in nature, constructed at the intersections, and within the convergent space of disability studies and other theoretical initiatives, such as Queer Theory and post-colonialism (Goodley 2013; Goodley & Runswick-Cole 2010; Meekosha & Shuttleworth 2009). This marks a departure from the materialist inclination and modernist underpinning of more classic disability theory in Ireland and the United Kingdom, such as the seminal British social model, which conceptualises disability as a product of society, rather than a problem located with the impaired individual alone (Shakespeare 2014).
The affirmative non-tragedy model, developed by Swain and French (2000), is then located within this. A non-tragedy position, whilst recognising that society creates disablement, is particularly concerned with promoting affirmative conceptualisations of disabled lifestyles and identity positions whilst rejecting and undermining conceptualisations associated with tragedy, pity, and loss (Swain & French 2000). Whilst the model is criticised for disregarding the reality of impairment as sometimes tragic (Flynn & McGregor 2017), Swain and French (2000) argue that impairment, physical pain, and suffering itself are also features of the lives of people who identify as able-bodied and, therefore, should not be conflated with disabled lifestyles and subject positions. Whilst ostensibly this would seem incompatible with CDS, which does not actually make a separation between corporeal experience and disability, a particular subconcept of CDS referred to as ‘self and Other’ explicitly rejects binary classifications of the human, such as able-bodied: disabled (Goodley 2013). In this way, it is coherent with the affirmative model in drawing attention to the commonality of all human experience, such as pain (Goodley 2013; Swain & French 2000).
Evidence of further compatibility between CDS and the affirmative model is perceptible. Within CDS, post-structural, post-modernist, and post-conventional influences discourage rigid categorizations of the human condition and encourage sensitivity to diversity and fluidity, including attention to the role of language (Flynn 2017b; Goodley 2013; Shildrick 2012). At the same time, this does not constitute the annulation of corporeal experience (Shildrick 2012). Therefore, whilst both the affirmative model and CDS differ from a medical model of disability through disregarding biological essentialism and individualized biological explanations of disability, neither fail to account for the corporeality of impairment (Goodley 2013; Swain & French 2000). Rather, both retain prime focus upon the cultural, relational, lingual, discursive, and psycho-social expressions of disablement. CDS and the affirmative model also share the non-equation of disabled lifestyles with lack or deficit, and both take as a starting point the nature of disability as a means to innovatively rethink common human experience (Goodley 2013; Swain & French 2000). Regarding the researcher’s own positioning within the fieldwork, an implication is that any assumption that participants with intellectual disability might wish not to be impaired was at the outset discarded. Within this, the need to listen to participants voices was emphasized (Flynn & McGregor 2017; Swain & French 2000).
Finally, the epistemological compatibility of CDS and the affirmative model with BNIM has several foundations. BNIM is a socio-biographic and psycho-social method that is methodologically attuned to psycho-social lived experience (Wengraf 2001, 2015). This fits with the core focus of CDS and the affirmative lens on relational, psychological, and social aspects of disablement (Goodley 2013; Swain & French 2000). BNIM is centered upon concern for three aspects of humanity: the individual’s life story (biography), the manner in which the individual tells that story (narrative), and the social interpretation (interpretative) (Corbally & O’Neill 2014). Therefore, theoretical approaches focused upon individual medical explanations of disablement, on societal barriers, or on relational aspects of disablement would be insufficient alone as complementary epistemology. Rather, the combination of CDS and the affirmative approach is epistemologically consistent with BNIM in its capacity to account for lived experience as a critical aspect of disablement, without designating the nature of disablement entirely to the realm of social construction (Goodley 2013; Swain & French 2000). In this way, BNIM, CDS, and the affirmative lens become epistemologically compatible through their multi-angular, complex, and nuanced capacity to account for disability.
Most recent figures from the National Intellectual Disability Database establish that within the Republic of Ireland there are 10,032 children with intellectual disability in Ireland (Hourigan, Fanagan & Kelly 2017). This figure, whilst indicative, is not absolute due to factors such as younger children potentially not having a complete diagnosis (Flynn 2017a). Limited life story and qualitative research has been undertaken with children with intellectual disability on varied topics, such as Berni Kelly’s (2005) work in Northern Ireland on the experience of impairment or Ann Lewis’ (2000) work on methodological challenges. As far as can be ascertained, this is the only study in Ireland to qualitatively explore the experience of austerity, or poverty, for children with intellectual disability and their families. In the aftermath of economic recession, whilst little is known about the socio-economic profile of children with disability who largely experience poverty in the context of their families (Cullinan & Roddy 2015), existing evidence points to exceptional social and economic disadvantage (Flynn 2017a). Within this, a divide between the lived reality of Irish young people with intellectual disability and their families and defining Irish disability policy aspirations is evident (Browne & Millar 2013; Flynn 2017a).
A defining historic feature of the Irish disability services has been the relations between the Catholic Church and the State. Politically, the Republic of Ireland gained independence from England in 1922. Based upon the principle of subsidiarity, Ireland demonstrated minimal state involvement in church service provision. Irish disability services have traditionally been provided through ‘local, relatively autonomous, voluntary organisations within a relatively decentralised monitoring framework’ (Power & Kenny 2010: 422; Power, Lord & DeFranco 2013). This was primarily through non-profit, civil sector, and primarily Catholic religious organisations (Flynn & McGregor 2018; Power & Kenny 2010). During the 1950s, Ireland represented one of the highest rates of institutionalisation in the world, particularly for people with intellectual disability (Power, Lord & DeFranco 2013). Later, a move towards service provision within smaller community settings was made in line with government policy and overall increasing policy emphasis on inclusion, participation, personalisation of services, and recognition of rights (Flynn & McGregor 2018; Power, Lord & DeFranco 2013). By 2004, sweeping reform of disability policy was underway with the National Disability Strategy (Power, Lord & DeFranco 2013; Flynn 2017a).
Progression of services was, however, grossly undermined as, in 2008, Ireland entered a state of economic shock imposed by unanticipated recession (DFI 2010; Flynn 2017a). Austerity measures and wide-ranging losses to services for young people with intellectual disability and their families in Ireland were imposed (Flynn 2017a). Core funding to non-profit disability services experienced overall reductions in the region of 9.4% between 2008 and 2015 (INMO 2015). This was aggravated by socio-economic factors, such as large-scale emigration of professionals (such as speech and language therapists), and increased demand for services, such as respite, owing to factors such as strain imposed through parental unemployment (DFI 2010; Flynn 2017a).
At this time, families with children with intellectual disability were already experiencing unequal, unpredictable, and geographically varied service provision (Flynn & McGregor 2018). The concept of individualised funding, which requires service users to be directly given funds to purchase disability services whilst exercising choice, was not a feature of the Irish system (Power, Lord & DeFranco 2013). Rather, notwithstanding some state service provision, such as limited speech and language therapy (SLT) through schools, the state channelled core funding to non-profit disability services that spent it largely at their discretion (Flynn & McGregor 2018). Consequently, by 2009, a government initiative was commenced to ameliorate inequality and lack of standardisation (National Reference Group 2009).
Economic conditions are now much improved. Ireland today is a comparatively wealthy European country (IMF 2016). International Monetary Fund (2016) figures from 2016, for instance, attribute it a nominal gross domestic product ranking of 14 out of 40 European countries, with Germany ranked 1 and Norway at 13, just ahead of Ireland.
As a starting point, the application of BNIM in the study should be further clarified before proceeding to a presentation of BNIM findings. BNIM might be described as both a method and an interpretivist methodology (Corbally 2015). As a psycho-societal method, BNIM takes a phenomenologically orientated qualitative narrative approach that assumes that individuals construct meaning in their lives through narrative (Wengraf 2001, 2010). As a method, it is orientated towards capturing people’s life stories, whilst taking an open consideration of the research topic by leaning towards unstructured interviewing (Wengraf 2001, 2015). This empowers participants with disability, rather than consigning them to the position of passive research subject (Peta, Wengraf & McKenzie 2018).
In this way, participants generate themes rather than researcher-imposed categories (Hesketh 2014; Wengraf 2001). BNIM may be used for empathetic bonding with marginalized young people (Hesketh 2014) and for the retrospective study of macro-societal events, such as recession, as rehearsed in existing projects (see Chamberlayne, Rustin & Wengraf 2002). Furthermore, BNIM has particular benefits in the context of disability as outlined by Peta, Wengraf and McKenzie (2018). In this way, it is emancipatory, rather than simply participatory, in methodological nature. It facilitates the voice of participants with disability, including contribution to knowledge in formal academia as pursued through this paper. Socio-biographic narrative accounts portray the meaningful lives children with disability lead, contrary to tragedy definitions of disablement (Peta, Wengraf & McKenzie 2018). Moreover, in line with the biographic turn in modern social sciences, both agentic and societal aspects of participants lives are balanced. Finally, BNIM does not fail to substantially account for psycho-social, historical, and cultural aspects of narrative life story (Peta, Wengraf & McKenzie 2018; Wengraf 2001). As Corbally and O’Neill (2014) articulate, this is important, because some life decisions are not intelligible without their historic context. It further assumes that the accounts provided by the participant are dependent on context, the participant’s situated subjectivity, and in-built emotional defenses (Wengraf 2001, 2010, 2015).
To account for such complexity, BNIM follows an intensive data analysis process, with psychoanalytic leanings and a phenomenological emphasis and social constructivist perspective (Corbally 2015; Wengraf 2001, 2015). In the context of austerity as a social justice matter, BNIM may also usefully uncover hegemonic ideas present within individual consciousness (Ross & Moore 2016). Notwithstanding its merits, criticisms of BNIM include that it is time consuming and its nature as an evolving method may lead to inconsistency or frustration for researchers as newer guidance on the method contradicts earlier versions (Wengraf 2001, 2015).
BNIM interviewing techniques are precise and prescriptive (Wengraf 2001). BNIM data collection begins with formulating a narrative-provoking question, referred to as the single question aimed at inducing narrative(SQUIN) (Wengraf 2001, 2015). The initial interview begins with subsession one, where the interviewer poses the SQUIN, followed by minimal interjection into the narrative flow of the participant (Wengraf 2015). Upon the natural cessation of the participant’s narrative, the researcher initiates an interlude break. Prior to this, in the initial subsession, the researcher had been compiling cue words, which are then utilised during the interlude to construct formatted questions that follow the gestalt sequencing of the participant’s narrative (Corbally & O’Neill 2014; Wengraf 2001). These questions are then carefully deployed in the more structured (and optional) subsession two (Wengraf 2001). Finally, after approximately a month, the researcher may revisit the participants and conduct a third interview following a structured questioning format. In this particular study, all participants undertook two subsessions, and two of the three participants were met again for a third extended session. One hour of reflective ‘experiential’ note-taking was also undertaken by the researcher following each interview (Wengraf 2001, 2015) and again after listening to the tape recording and after transcription.
The BNIM analysis process that followed was applied across nine loosely demarcated steps for each participant, with a tenth step constituting a theoretically informed cross-case comparison. The analytic process, derived from the work of Fischer-Rosenthal and Rosenthal (1997), as developed in the UK by Chamberlayne and Wengraf (Chamberlayne, Rustin & Wengraf 2002), is complex and lengthy, as previously noted. It is, therefore, not possible to present a full account here. Taken as a whole, however, a defining feature of the analytic approach is its initial separation of two axes of analysis: on one side, the research investigates the lived life (the biography), whilst on the other, the researcher analyses the told story (narrative). This study followed a classic application of BNIM, availing itself also of the full use of panel analysis as part of the method (Wengraf 2001, 2015). It held a total of nine interpretative panels with carefully considered heterogeneous membership based upon the expertise of panelists (for instance, holding a relevant PhD and lectureship; being extensively professionally experienced in the appropriate field; or having the appropriate life experience expertise, such as being a mother of a child with disability). Three types of panels were convened for each case, referred to as Lived Life Panels, Told Story Panels, and Microanalysis Panels (Wengraf 2015). In addition, the analytic approach was multilayered, such as including in-depth quasi-quantitative thematic analysis and structural analysis of transcripts; field research, including compilation of external documents and site visits; external verification of life story facts; research into political, cultural, and historical contextual factors; member-checking; and in this study, both qualitative and quantitative discourse analysis. Despite this rigor, BNIM’s epistemological position is to intentionally capture the subjectivity of the participant as they tell the story in that particular moment to that particular researcher, rather than perceiving there to be in existence an objective, context, and time-independent story (positivist epistemology). The researcher then builds on the credibility of the account by externally verifying facts and undertaking various analytic methods towards presenting a fully developed story incorporating both subjective told story and accurate lived life. As a necessary consequence, the presentation of the final life story is primarily achieved through the researcher’s voice. To support this, multiple analysis processes are undertaken specifically aimed at minimizing researcher bias, such as hypothesis generating within panels (Wengraf, 2001).
The study sought to investigate the impact and lived experience of economic recession for young people with intellectually disability and their families. Both purposive and convenience sampling strategies were adopted. During recruitment, a gatekeeper employed by a disability service advertised the study and sought permission from staff and parents to share their details. Then the researcher directly contacted potential participants, and the young person’s informed consent was obtained.
A framework method was applied to a sample of eight (consisting of two young people with intellectual disability, three parent/guardians, and three social workers). Framework method was developed by Jane Richie and Liz Spencer in the 1980s and follows a systematic qualitative approach that involves coding transcripts to create emergent themes, which then form the basis of an analytic framework. This framework is applied to remaining transcripts to complete thematic analysis (Gale et al. 2013).
In addition, as already indicated, the study applied BNIM analytic method to a sample of three (one young person with intellectual disability, one parent, and one social worker). The smaller sample size, as compared with qualitative mainstream, is usual in BNIM in the context of the lengthy and sophisticated analytic requirements (Corbally & O’Neill 2014; Wengraf 2015). To support researcher oversight, an advisory committee of adults and young people with intellectual disability and parents/guardians of children and young people with intellectual disability was established for the study through an independent disability sector organisation. The purpose of the committee was to advise on the study at data collection, analysis, and dissemination phases. Furthermore, full ethical approval for the research was achieved through three separate research ethics committees in the three distinct organisations involved. Finally, an initial pilot study was undertaken with one young person with intellectual disability.
BNIM case history accounts of Breandan, Aoife, and Siobhan will now be presented. These present the researcher’s narrative reconstruction of what the participant’s present perspective was on their past lived experience (Wengraf 2001, 2015). As is often customary with presentation of BNIM life stories, the researchers voice is dominant within the following stories (seeCorbally 2015; Wengraf 2001). The empirical material presented is necessarily limited by the confines of the article; nonetheless, cases reflect the conscientiously balanced product of in-depth systematic and intense analysis processes that dictate their final form as analytical narrative, including multi-part methodological refinement of a much larger quantity of original data. Verbatim quotations taken directly from the original biographer are presented within this, however, to retain closeness with the original accounts. Pseudonyms are also used throughout to protect anonymity.
Breandan, now 16 years old, attends a specialised secondary level public school for children with disability, ‘Yeah, I’m there a long time to get educated, since I was 8.’ Reflecting upon changes since the recession, Breandan now concedes that ‘it is more of a good life, more good things.’ Among these good things, features a newly active and engaged lifestyle. ‘I have bowling on Monday, I had swimming… it’s now on Tuesday, it’s drama on Monday, and Wednesday I do dancing…Thursday arts club …Friday there’s bowling club on, and Saturday again there’s bowling again, and gymnastics on Saturdays, and then football on Sunday.’ Breandan is an accomplished athlete, recently returned from competing in ‘Los Angeles in gymnastics’ where ‘some great wins’ were coveted. Breandan is also a young person labelled with Down syndrome and mild-moderate intellectual disability, who aspires to a performative music career. ‘I want to be a DJ all my life… I’m going to college to be a DJ, yeah, I like working-working on the decks.’ Notwithstanding his aspirations, ultimately, Breandan’s story has been one centred upon a struggle to speak. In Breandan’s own recollections, ‘I needed to talk.’
From birth to the age of nine, Breandan did not begin to develop verbal articulacy, despite being fully assessed by a qualified clinical specialist as being cognitively and physiologically able with limited assistance for verbal dyspraxia from SLT. Breandan commenced primary school education in a nonspecialised public school in 2006, but by 2008, some two years later and alongside the impact of recession, the SLT provided by Breandan’s state-funded disability service that had supported his education was significantly reduced. This was largely due to funding cutbacks imposed by official government austerity programmes and a decrease in other sources of revenue directly due to the recession (e.g., corporate sponsorship). Breandan’s parents in 2008 decided to move him to a specialised primary and secondary level school for children with disability to enable him to access limited in-school SLT provision. Unanticipated by his parents, and only once the move was made, the disability service significantly cut his now limited SLT provision due to recessionary funding reductions. In this context, Breandan reflects, ‘It wasn’t fair, I needed it.’ Breandan recounts many consequences of his inarticulacy. During the economic downturn, at the funeral of his grandfather, with whom he was very close, ‘I remember it even though it was a long time ago because it is stuck in my head, the memory of me seeing my grandad dead and lying on the bed …when my grandad died and was buried I need to talk about it.’ Breandan further describes the struggle when his father was rendered unemployed from a job he had held for decades due to economic recession in 2008. ‘Yeah my dad lost his job, it was sad, yeah my daddy sang a song and cried- and we cried together… I was worried, yeah, worried.’ Breandan and his mother, Aoife, engaged in extensive fundraising and public advocacy to raise awareness about the cutbacks and lack of SLT. ‘I went on (National) TV to highlight the lack of Speech and Language Therapy.’ Despite this, many years were spent travelling long distances and regularly paying 70 to 80 Euros a session, excluding mileage, for private SLT, which eventually, but after unnecessary delay, led to Breandan’s development of speech. In this context, with Breandan’s father now unemployed, Breandan’s mother could not work as a result of having to support Breandan’s care needs, which Brendan explains, ‘my mam and dad weren’t working.’ Breandan also had a number of siblings, and as financial worries began to mount for the family, a series of significant close family bereavements forced the family into a prolonged state of mourning. ‘A lot of people died.’ With Breandan’s father reemployed and, in Breandan’s estimation, ‘much happier now,’ Breandan now describes a more positive lived experience. ‘I like talking every day …saying my words out and giving my news’ (Flynn & McGregor 2018: 122–124).
Soon after the impact of recession in 2008, Breandan’s mother, Aoife, sought ‘counselling for two years’ to cope ‘with depression,’ and as financial worries and bereavement converged, ‘there was a lot of worries,’ and ‘huge worries-yeah, with money.’ As Aoife recalls, ‘You can’t let the kids know you’re worried about putting food on the table.’ Within this, Aoife describes how, upon the impact of recession, her husband, ‘lost his job in the same week that his mother died …turned out he was out of work for three years …I found it really difficult to have him home during the day, that was the toughest years.’ The reality of unemployment is depicted by Aoife as ‘very very tough, we found it very tough for Sean to be at home. It was very tough for both of us.’ Aoife sought to hide financial worries from Breandan and his siblings. ‘You do protect the kids, you protect them from the financial end of things … there was a lot of worries.’ Notwithstanding these financial concerns, for Aoife, Breandan’s speech difficulties presented the defining challenge of austerity. ‘The main thing was speech and language with the recession, it was the talking.’
Aoife struggled to respond to Breandan’s behavioural difficulties, which she believed were underpinned by lack of speech and compounded by feelings of bereavement: ‘behaviour … it was hard to work out then but at least he can talk now.’ It was Aoife ‘s contention that little support was provided through state-funded disability services. ‘We couldn’t get the support we needed,’ materialising the need for her to ‘fight’ for services, as ‘everything is a battle’ and ‘another battle, everything seems to be, you have to fight for everything.’ Aoife indicated that SLT, respite care, advice and guidance, preventive work, as well as basic information and support, were some of the services most seriously lacking due to service cutbacks: ‘all the Speech and Language Therapists were emigrating off to Australia and America emm … and the Speech and Language Therapists were going on maternity leave and they weren’t being replaced and there were huge gaps in the service …speech and language, we were crying out for it and we couldn’t get it.’ Similarly, she describes losses to respite care provision: ‘We hadn’t gotten respite since 2009 (5 years)…so everything’s a battle.’
Aoife also disclosed, within her narrative account, that Breandan had both experienced and perpetrated abuse in his community. ‘Things happened here with kids on the road and interference happened to him and he copy cated onto someone else.’ This, she subjectively felt, was largely consequential of the lack of preventative and educational service cutbacks. ‘If there had of been steps taken…rather than waiting for it to happen.’ Following this, however, Aoife articulates the relevant disability sector organisation took responsibility. Finally, throughout her lived life account, Aoife and other parents provided practical and instrumental parenting support to each other. In this context, Aoife articulates regret that ‘there should be more paid advocates.’ Later, the informal social support group Aoife drew upon was formalised into an official organisation (Flynn & McGregor 2018: 126).
Siobhan is a senior social worker in the state-funded disability services allocated to support Breandan, a role she describes as ‘fundamentally changed’ by recession. Siobhan articulates how services within her organisation have been ‘catastrophically cut,’ particularly as ‘core funding has been cut by something like 12 million in the last five years.’ Her recounted lived experience of recession includes that of onlooker to client’s struggles, ‘such as the whole homeless situation,’ which ‘has had a phenomenal impact,’ and more generally because, ‘it’s absolutely despairing when you see need there and you only have one answer, sorry there is no money we can’t do anything about it.’ Siobhan catalogues an array of practical losses, such as a ‘massive’ two-thirds reduction in respite beds for a service user population of one and a half thousand, and positioning of her organisation ‘on the verge of bankruptcy’ following recession.
Siobhan also describes specific circumstances of families trying to cope without services within conditions of austerity, which are often graphic and unsettling. A parent ‘that threatened to smother their child’; a mother who had said that she could not cope with her adult son with disability, who then assaulted her ‘in a public park and it took four men to bring the assault to an end’; or where one ‘mum had kind of said to me a couple of times, when she was driving her car that it would have been so easy just to swerve across the road and just end it, and that would have been you know a reasonable thing to do.’ Siobhan details extensive efforts to raise awareness and advocate for families. ‘I tell them I will absolutely tell the truth about their story,’ and yet for Siobhan, ‘the bit that makes me unbelievably angry is that marriages and mental health and all the relationships have to go down the swanny before something actually happens and I just think that’s really shocking, really really shocking.’ Siobhan’s recollection of the toll of austerity encompasses both staff and families, with disability managers ‘on the verge of complete collapse themselves,’ and families placed in positions where ‘it is absolutely soul destroying.’
Risk was also a strong thematic feature of Siobhan’s biographical account. ‘We would suspect that there was a lot of restraint and door locking and things,’ as lack of support ‘forces people into a terrible corner.’ Prior to this, Siobhan had asserted that ‘literally the amount of respite available to children has been catastrophically cut.’ For staff, risk was also a feature: ‘one very serious assault on a staff member that ended that persons working life,’ and if funding had been there, ‘you could head off all these terrible crises.’ Siobhan contextualises examples such as these against factors that she says ‘have been very difficult to predict,’ such as hugely expensive and completely unsubsidised inception of health information and quality authority (HIQA) governmental inspections.
A reading of the cases explicitly through an affirmative non-tragedy lens may assist with processing their meaning (Swain & French 2000). Focused discussion in this section develops toward a wider CDS analysis of the cases. This follows Flynn and McGregor’s (2017) assertion that the non-tragedy model might be situated within the broader CDS perspective, with both espousing a social justice orientation.
In this study, the affirmative lens assisted with addressing the concern that the study’s findings around the negative impact of recession might contribute to charity, victimhood, and tragedy discourses, which people with disability and their allies had already deemed unhelpful (Goodley 2016; Shakespeare 2014). Thematically, Breandan espoused the most affirmative interpretation of the disabled identity position. He articulated gratitude for the lifestyle and social connections garnered through disability social clubs and programs. It was the cutbacks to these programs and lack of service provision that seemed to be conceptualised negatively, rather than impairment. Aoife and Siobhan, alternatively, were more inclined to take up master narratives of disability within personal narratives, that were characterised by loss and negativity. The disparity in accounts relates to Power and Hall’s (2018: 307) examination of disability and austerity. Therein, they established that recessionary cutbacks to disability services had complex effects extending to socio-spatial relations because disability and caregiving in austerity involves ‘complex relational practices and coping strategies.’
Considering this in the context of CDS, Flynn (2017a, 2017b) establishes the potential of CDS as an appropriate means to understand the impact and experience of economic recession for children and adults with disability. Applying this position, it appears that, in Aoife’s and Breandan’s cases, concern with the material reality of economic recession was substantive (for instance, worry about not having enough food or Breandan never gaining verbal articulacy in the absence of speech therapy). However, such material loss, across all three cases, was most often conceptualized as being a product of, and then legitimized by, relational, cultural, and discursive formations that were arbitrary, such as discourses and debates about austerity. This supports Power and Hall’s (2018: 302) assertions that within ‘the growing politics of austerity…norms and expectations are once again being reviewed and reconfigured. New spaces and relationships of care are unfolding, as austerity intensifies many debates over the role of the state vis-a-vis the private, informal and third sectors.’ In this context, Dodd (2016) establishes disability studies need to become more theoretically orientated towards austerity due to the overbearing importance of addressing cutbacks to services and supports for children and adults with disability. Particularly, as articulated by Goodley (2013), the recession has reformulated the meaning of disability, and in response, new theorisation is needed. In this context, Flynn (2017b) proposes that CDS may assist with the preoccupation with cultural, lingual, and discursive matters in disability theory to incorporate more concern for material reality, such as in Ireland, severe cutbacks, including a 19% cut to the respite care grant in 2013 and waitlists in 2014 of over 1,000 children and adults for occupational therapy and SLT (Browne 2016). Breandan’s, Aoife’s, and Siobhan’s cases, through a CDS perspective and non-tragedy lens, demonstrate the experience of disability and austerity was not solely a matter of material loss, neither was it a reaction to culture, debates, and discourse, but rather, it was a complex and sometimes codependent relationship between both that ultimately left families with a child with intellectual disability distinctly disadvantaged.
This paper presented three biographic narrative case accounts detailing lived experiences of disablement in Irish economic recession. The accounts bring to the fore the critical nature of socio-economic disadvantage for young people with intellectual disability and their families. Within this, it is hoped that findings will provoke further investigation into this qualitatively under-researched area. Drawing to a close, some reflections on the future of disability studies may be constructive. History provides an important resource for speculation about the future. As the longevity of recession revealed itself (Allen 2009; Barry & Conroy 2012), the individualising forces of the free market economy undermined social bonds (Dodd 2016). Austerity measures acted to subvert social solidarity, presenting a hostile context for communities that embraced interdependence (Allen 2009; Dodd 2016). In looking to the future, findings of this study infer questions about what must be achieved to ensure better protection for the lived experience of disabled communities when capitalist economies inevitably once again relapse into a state of economic recession. The challenge lies in pursuing this project without reinforcing outdated conceptualisations of disability associated with tragedy and helplessness.
The author thanks the research participants for their time and expertise and acknowledges the excellent supervision of this research by deidentified of Professor Caroline McGregor of the National University of Ireland, Galway. The author is further grateful to the reviewers for their valuable advice.
The author has no competing interests to declare.
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