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Slide 1: Title: Family trouble: work, disability and austeritySlide 2: OverviewProjects and publicationsCritical Disability Studies – ableism and disablismThe Ideal FamilyThe context of neoliberal ableism‘Hard working families’ vs ‘Troubled families’Strategies for resistanceResist individualizationUse and refuse the normActivismFuture directionsSlide 3: The projectsSo today, I’m going to draw on discussions of these ideas generated from several research projects to think about work, disability and austerity in family life. Does every child matter, post Blair? The interconnections of disabled childhoods. (2008-2011)Economic and Social Research Big Society? Disabled People with Learning Disabilities and Civil Society, Economic and Social Research Council (2013-2015)Living Life to the Fullest: life, death, disability and the human, Economic and Social Research Council (2017-20) Slide 4: The publicationsThe talk is also based on conversations and publications with a host of colleagues whose names you’ll recognize and whose work you might want to look at if you are interested in the ideas here...Douglas, P., Runswick-Cole, K., Ryan, S., & Fogg, P. (under review) Mad Mothering: and intersectional approach, Canadian Journal of Disability StudiesGoodley, D., Liddiard, K. and Runswick-Cole, K. Living life to the fullest: Theorising Life, death and dis/ability, Sociology of Health and Illness.Goodley, D. and Runswick-Cole, K. (2014) Becoming dis/human: Thinking about the human through disability, Discourse: Studies in the Cultural Politics of Education, 37 (1): 1-15.Runswick-Cole, K., Lawthom, R. and Goodley, D. (2016) The trouble with hard working families, Community, Work & Family, 9 (2): ?257-260.Runswick-Cole, K. and Goodley, D. (2017) ‘The Disability Commons’: re-thinking motherhood through disability. In Runswick-Cole, K., Curran, T. and Liddiard, K. (eds) (2017) Palgrave Handbook of Disabled Children’s Childhood Studies, Basingstoke: Palgrave.Runswick-Cole, K. and Ryan, S. (in press) Liminal still? Un-mothering disabled children, Disability & SocietyRyan, S. and Runswick-Cole, K. (2008) Repositioning Mothers: Mothers, Disabled Children and Disability Studies, Disability and Society, 23 (3): 199-210. Slide 5: Critical Disability StudiesI want to begin, briefly, by locating this paper within critical disability studies. British disability studies have their roots, of course, in Marxist materialist models of understanding disability as the social oppression of disabled people, the much-debated social model of disability (Oliver, 1990). Following the announcement of Mike Oliver’s death earlier this year, I would like to pay tribute to him today for his contribution to scholarship and to activism. Many disabled people and their families have directly benefitted from his work, including my own family, and we are grateful for his legacy.Notwithstanding the enormous contribution made by Oliver and his contemporaries, over time the disability studies have developed and grown. Disabled feminists have intervened to remind us of the personal-as-political aspects of disability activism and academia (Crow, 1992; Morris, 1996; Garland-Thomson, 2005). People with intellectual disabilities continue to fight their way into the discipline in a context that has traditionally been dominated by white, physically impaired men (Crow 1992). Mad activists and scholars have also demanded that their experience is part of the wider disability studies community (Russo and Beresford, 2016; Boxall, and Beresford 2015; Veronka, forthcoming; LeFrancois et al. 2013). Ideas from gender and queer studies have also been pulled into debates (McRuer, 2006). Nordic relational models of disability have spread as a critical realist turn (Shakespeare, 2006; Vehmas and Watson, 2013) has sparked an exploration of new materialisms within disability studies (Feely, 2016; Mitchell and Snyder, 2016). And post structuralist accounts persist (Shildrick, 1992). Despite the continued whiteness of disability studies (Bell, 2010), postcolonial theorists and voices from the global South have begun to puncture the disability studies culture and consciousness (Meekosha and Soldatic, 2011; McKenzie and Chataika 2017; Grech 2011). Critical disability studies have become, above all, an intersectional inquiry that are prepared to plunder shamelessly from a variety of theoretical resources, including feminism, queer and postcolonial theory, in order to illuminate, challenge and seek to change the lived experiences of disabled people [Goodley, 2013].I want to bring this intersectional critical disability studies lens to the issues of family and disability in the context of austerity. Slide 6: Disablism and ableismRecent critical disability studies scholarship has drawn our attention to the dual processes of disablism and ableism. Here, I follow Carol Thomas who has defined disablism as: ‘a form of social oppression involving the social imposition of restrictions ofactivity on people with impairments and the socially engendered undermining of their psycho-emotional well being’. Thomas (2007: 73) And Fiona Kumari Campbell who has defined ableism as: “a network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability is then cast as a diminished state of being human” (Campbell, 2009:5)I am arguing that contemporary policy discourses of ‘the family’ have been influenced by both the logic of ableism and the practices of disablism. The construction of the ‘ideal’ family casts those families who deviate from that ‘ideal’ as, at best, different from, and at worst, less than other families. Being ‘less than’ other families carries with it the associated risk of discrimination associated with disablism. I am going to consider how these contemporary discourses of the family impact upon families who fail to match up to the ideal type, including disabled people and their families. Finally, I reflect on some of the ways in which we might be able to resist the discourse of ‘hard working family’ in a time of austerity, before thinking about future possibilities.Slide 7: The ‘ideal’ family in a context of austeritySince the global financial crisis of 2010, the UK has been particularly attached to the politics of austerity. Cuts to public services have had a devastating impact on the lives of many families but they have disproportionately impacted on disabled people and their families to the point where the United Nations found that the UK government was responsible for grave violations of the rights of disabled people. In the UK, an attachment to austerity politics has been nurtured by the total disaster that is the British government’s attempts to honour ‘the people’s’ wish to leave the EU – otherwise known at the Brexit omnishambles. The pre-occupation with Brexit has significantly disrupted day-to-day government business and distracted the public debate away from issues of social justice.Despite this preoccupation with Brexit, the ‘family’ is still invoked in political discourse. The ‘family’ is simultaneously identified as being both the cause of the problems of society: from juvenile delinquency to teenage mothers to childhood obesity and knife crime. At the same time, family is held up as the site of the potential solution to many societal ills. While some families have been identified as causing social problems, others have been identified as offering the solution – they are ‘hardworking families’. In fact, in the UK, politicians from across the political spectrum hardly ever used the word ‘family’ without prefacing it with the phrase: ‘hard working’. The ‘hard working family’ is the ideal family; it makes few demands on the state and is self-sufficient. While many associate this discourse with successive UK right-leaning governments, it is a language that has been used by politicians from across the political spectrum:"If I’m Prime Minister I will put working families first …”Ed Miliband, former leader of the Labour Party and Leader of the Opposition Government, UK (ITV News Online, 2015).“What we want to do is get behind families that work hard and do the right thing.” David Cameron, Former Prime Minister, UK, (The Sun Newspaper, no date)In her first statement as Prime Minister, Teresa May shifted the discourse slightly when you referred to the ‘just about managing’ or jams:“You have a job but you don’t always have job security. You have your own home, but you worry about paying a mortgage. You can just about manage but you worry about the cost of living and getting your kids into a good school.” Teresa May, (Former) Prime Minister, Teresa May, 13th July, 2016 (first statement as prime minister)Clearly, JAMs are hard working families too.This language has also been taken up across the global North. In the United States and in Australia, politicians have also adopted the discourse of the hard working family to demarcate the workers from the scroungers. While the ‘hard working families’ may not have the same discursive presence in Nordic countries, “Nordic model” welfare policies that support high rates of female employment ensure that Nordic families can be ‘hard working families’ too. Slide 8: The context of neoliberal-ableismI have already described a context of austerity in the UK. Inevitably, austerity is closely associated with the politics of neoliberalism. Neoliberalism is widely used to refer to monetary and trade policies that are associated with free market economies; neoliberalism has come to dominate global politics since the 1980s (Richardson, 2005). ?It is firmly associated with rolling back state activities and opposing what is characterized as ‘excessive intervention’ in citizens’ lives, including in family life (Goodley, 2011). Of course, neoliberalism has been widely critiqued. Feminists, for example, have argued that neoliberalism and patriarchy are inextricably linked. Women who fail to live up to the neoliberal, patriarchal demands to engage both in paid labour and to care for children in order to raise ‘productive’ citizens are vilified in public policy and in contemporary cultural representations (Jensen, 2018). Similarly, Goodley et al., (2014, p. 98) argue that: “neoliberalism provides an ecosystem for the nourishment of ableism” which they define as “as neoliberal-ableism.” Under neoliberal-ableism, the rationality of the market is paramount; the ideal citizen is an adaptable citizen indeed he is an able individual (note the deliberate gendered/ableist positioning of the subject here) who is caught up in and complicit with the demands of late capitalism (Goodley, Lawthom & Runswick-Cole, 2014). Slide 9: Hard working families vs troubled families (or us and them)Crucially, neoliberalism is premised upon the distinction between ‘us’ and ‘them’ (Ramilow, 2006; Runswick-Cole, 2014). The logic of neoliberal-ableist ideology demands that we sort the leaners from the lifters, or the shirkers from the strivers. It is imperative that ‘we’ can establish who should (and who should not) benefit from the redistributive practices of the welfare state (Stone, 1994). The naming of ‘hard working families’ can be seen as a not so subtle attempt to establish the boundaries ‘us’ from the ‘them’ in public policy discourse of the family. The ‘hard working family’ discourse conforms to the neoliberal-ableist trope; the ‘hard working family’ is independent, self-sufficient and, crucially, it does not rely on the state for its survival. As David Cameron, the then British Prime Minister said, these are people who ‘do the right thing’ (The Sun Newspaper, no date). Implicit in the policy rhetoric is that the ‘hard working family’ is a ‘normal’ family. Hard working families’ include two (hetero)normative parents both of whom are able to engage in paid work. Under neoliberal-ableism mothers are expected to be able to labour and to consume, and to mother and to care (de Benedictus, 2012) if they want to be judged to be ‘doing the right thing’. Slide 10: Troubled families‘Hard working families’ are constituted both directly and indirectly in contrast to those families who have been constructed as their polar opposites: ‘troubled families’ (Department for Communities & Local Government, 2012). In a speech in 2011, Cameron, the British Prime Minister said:…. I want to talk about troubled families. Let me be clear what I mean by this phrase. Officialdom might call them ‘families with multiple disadvantages’.Some in the press might call them ‘neighbours from hell’. Whatever you call them, we’ve known for years that a relatively small number of families are the source of a large proportion of the problems in society.(Cameron, 2011) In defining ‘hard working families’ Cameron appeals to the implicit assumption that they will to ‘do the right thing’ – work hard, care for their children, and will not make a claim on the welfare state or be a drain their local communities. In contrast, in his account of ‘troubled families’, he makes an explicit appeal to popular understandings of ‘neighbours from hell’ in order to drive home the message that these families are not like ‘us’: they are firmly in the category of ‘them’; they don’t work, they claim benefits and they disrupt their local communities. In discussion of both ‘hard working families’ and ‘troubled families’, Cameron appeals to an unspoken assumption, that ‘we’ know who ‘these people’ are. These negative representations of some families reveal the ‘the turn to austerity’ reaches beyond the economic sphere towards the realm of the social and emotional (Jensen 2012:3). Jensen (2013:2) pays attention to the role of affect in which she argues that the sermons of austerity are built on the language of emotion - the language of ‘envy, distrust, disgust and shame.’ This emotive characterisation of the troubled family serves the government’s argument that poverty is only ever a product of work-less-ness, and work-less-ness as only ever a condition of individual (moral) failure (Jensen 2012). Indeed, above all, twenty-first century family life in England has been re-imagined as an individualised project. Through the individualization of parenting practices, families and children emerge as the site of the problem, the intervention and, of course, the blame. While the neoliberal language of ‘parent’ masks the gendered aspects of parenting (Traustadottir, 1995), it is still mothers, or maternal figures, who are expected to take on the major responsibility for care (de Benedictus, 2012). Mothers, in particular, are blamed for a series of ‘wrong’ choices for their children and for breaking the ‘new sexual contract’ (McRobbie 2009 cited in de Benedictus, 2012: 4) in which women are expected ‘simultaneously’ to ‘labour/consume and mother/care’ (de Benedictus, 2012: 4). The neoliberalisation of the family demands individual self-governance and willfully obscures the role that contemporary political and societal structures play in family life – (hetero)sexism, racism, class, poverty and dis/abilism are simply erased. Side 11: Re-enter disabilityWhat happens, then, if we try to re-insert disability into discussion of the family? How might disability help to trouble, or unsettle, the notion of the ‘hard working family’ and to dismantle the binary ‘us’/’them’ (the hard working family and the troubled family) constructed through neoliberal ableist logics? When this thing we call ‘disability’ enters the field, whether in research, education, health or social care, there is often a moment of disruption – ‘disability queers the normative pitch’ (Goodley and Runswick-Cole, 2015). How can the politics and potential of dis/ability open up affirmative and resistant possibilities for thinking about ‘the family’ and the value of human diversity and difference? The disruptive potential of disability is a thread that runs through the research projects that I detailed at the beginning of this talk. So let’s meet some diverse families that we worked with in each of these research projects. What is their relationship to the category of ‘hard working family?Slide 12: Hard working disabled families? Way back in 2008, I worked with Dan Goodley on a research project called ‘Does Every Child Matter, post-Blair? The interconnections of disabled childhoods’. The project was focused on the impact of the many changes to policy for children under the New Labour government. During the project, we met Mary. Mary was the mother of a young man with complex needs, David. Aged just sixteen, David had already lived longer than anyone had expected. Mary was an accomplished mother, carer, nurse and, in effect, the leader of a multiprofessional team co-ordinating the care for her much loved son. Her partner worked full-time but Mary had not been in paid work since her son was born. Mary and her partner worked hard but family life was dependent on a host of (expensive) services and supports including: special schooling, school transport, frequent trips to A&E, and access to disability benefits and carer’s allowance. Under the logic of neoliberal-ableism, Mary’s family may have been judged to be ‘doing the right thing’ in caring for their son, but their dependence on state services and support compromise any claim they might have to the ideal family type. From 2013-2015, as part of our Big Society research, exploring the lives of people with learning disabilities in a time of austerity, we worked with participants and with co-researchers who were also negotiating the dis/ability complex. We met Valerie (pseudonym), a young woman who is paid as a trainer and advocate at a small self-advocacy organization in the north of England. In addition to her roles as advocate and trainer, Valerie works for the Care Quality Commission, which inspects provision for people with learning disabilities, as an expert by experience. Valerie regularly inspects services for people with learning disabilities, including group homes and hospitals. Valerie has two daughters and she works hard to support her two children. Extended family, colleagues and friends at the self-advocacy group all support Valerie’s family life. And yet the presence of disability disrupts any claim this family might have to being categorized as a ‘hard working family’. The ‘hard working family’ is independent, self-sufficient and, crucially, it does not rely on the state for its survival, in contrast, Valerie’s family is interdependent, relies on a network of support and on state benefits for its survival. That Valerie is ‘hard working’ may not be in dispute, but the family isn’t ‘hard working’ enough to be categorized as a ‘hard working family’. The systemic and structural disadvantages that persist in families sitting at the intersections of gender, sexuality, race, ethnicity, class and dis/ability mean that many families will, like Valerie’s, are categorised as ‘them’. Categorisation as a ‘hard working family’ has become the preserve of the independent and able few. In our current project, Living Life to the Fullest: life, death, disability and the human, Dan Goodley, Kirsty Liddiard and I are working alongside a group of six disabled co-researchers: Lucy Watts, Sally Whitney, Carrie Aimes, Katy Evans, Emma Vogelmann and Ruth Spurr. Each of these young women lives with a life-limiting or life-threatening impairment, each of these young women works (some are in paid work, some are in voluntary roles). Here are young women living their lives to the full as they contribute to their families and communities. They are nested in complex networks where they give and receive support. Their support networks include their partners, other family members, friends, practitioners and, indeed, canine partners alongside services and access to benefits. Their interdependent lives, including work and benefits, seem far away from the lives imagined when politicians invoke the ‘hard working family’ discourse.Disability, difference and diversity reveal the trouble with the narrow, normative hard working family discourse and the need to resist a narrative that pushes the lives of disabled people to the margins.Slide 13: Resisting the discourse – re-imagining the ‘hard working’ familySo, how can we resist discourses of the family that position families like Vicky’s and Mary’s and young women like Lucy, Sally, Carrie, Emma, Katy and Ruth outside of the category of the ‘hard working’ family? How might it be possible to resist narrow versions of the ‘normative’, and implicitly desirable, family drawing on an intersectional critical disability studies lens? I’m going to suggest that a critical disability studies approach can offer a number of strategies of resistance.Slide 14: 1. Resist individualisationThe first strategy is to resist individualization. Feminists have challenged neoliberal-patriarchal notions of good mothering – that mainstay of the ideal family - by challenging the relentless focus on the functioning of the mother-child dyad in mothering practices (O’Reilly, 2013). The focus on the mother-child dyad is a part of process of individual responsibilisation that seeks to erase the role of state in family life. O’Reilly proposes ‘othermothering’ as a disruptive alternative to patriarchal mothering. ‘Othermothering’ promotes acceptance of the view that a mother should not be the only one responsible for raising a child (O’Reilly, p. 83). Rather than an individualized task, raising children becomes the responsibility of the community. Postcolonial writers have similarly drawn on ubuntu to challenge the focus on the individual mother and child:Whatever happens to the individual happens to the whole group, and whatever happens to the whole group happens to the individual. The individual can only say: ‘I am, because we are; and since we are, therefore I am’ (Mbiti, 1992, p. 109, cited in Chataika and McKenzie, 2013: 158) An individualised focus on the mother-child dyad makes no sense from the perspective of ubuntu; the mother and child can only be understood as part of their wider communities. I don’t want to homogenize or to exoticize African ways of understanding and valuing the human, however, ubuntu offers the possibility to disrupt the mechanisms through which global North neoliberal contexts produce and discipline ‘hard working families’. This distributed approach to mothering has recently been mirrored within Critical Disability Studies. In global North contexts, mothers of disabled children are normally expected to be the sole advocates and activists for their child as well as taking the major responsibility for care and rehabilitation (Douglas et al, under review). In contrast, authors writing from critical disability studies propose more distributed forms of mothering. By invoking the disability commons (as a collective of disabled and non-disabled people who are committed to social justice) it is possible to resist the individualizing tendences of neoliberal-ableism (Runswick-Cole and Goodley, 2016). Through this distributed approach, there have been calls for ‘unmothering’ as a way of challenging the individualization discourse of patriarchal mothering ‘to break through silos of temporality and exclusion’ (Runswick-Cole and Ryan, in press, np). ‘Unmothering’, like ‘othermothering’, seeks to shift the responsibility for child rearing and for mother-activism away from mothers, or those who take the mothering role, to wider communities (Runswick-Cole and Ryan, in press)Slide 15 - Strategy 2: Use and refuse the normThe hard working family is constructed through discourses of normativity – the normal family has two parents (male and female) both in work and the normal family raises typically developing children who pose no present or future drain on the state. Critical disability studies scholarship has documented the complicated relationships disabled people have with the norm – the norm is, at times, seductive and desirable, we all want to be like other people, but at other times the norm is experienced as a form of tyranny, an unachievable standard that is persistently out of reach, and that ultimately marginalizes and excludes disabled people (Goodley and Runswick-Cole, 2014) In resisting the tyranny of the norm, we can learn from feminist scholarship. Feminist writers have described the ways in which mothers have both used and refused the norm to resist their designation as ‘bad’ mothers. Croghan and Miell (1993) document the ways in which in their interactions with social workers, mothers might accept their designation as ‘bad’ in order to negotiate better terms or even partial acceptance for themselves and their families. Other mothers actively sought to situate themselves outside the norms of the institution of motherhood by mothering against patriarchal versions of motherhood. O’Reilly, 2013, describes those who have chosen to be: ‘outlaws from the institution of motherhood’. She describes them not as bad mothers, but as empowered mothers. Queer theory, and work that queers motherhood, also informs discussions of the family. In her edited collection, Queering Motherhood: Narrative and Theoretical Perspectives (2014), disability and queer theorist and mother Margaret F. Gibson brings new insights into how ableist, patriarchal and homophobic forms of violence, including eugenics, mother blame and the imperative of normalcy, are entwined, and potentially resisted, within the everyday encounters of queer mothers of a disabled child. Disabled families undoubtedly trouble and are troubled by norms. In families, the arrival of a non-normative child renders the mother ‘grief stricken’ or ‘in denial’ (Lazarus & Folkman, 1984). Through the normative discourses of the psy-professions, it seems there is no possibility of a sane response to the birth of a disabled child (Ryan and Runswick-Cole, 2008b) and the statistics reporting on the use of anti-depressents by mothers of disabled children could be used to support this claim (Scope, 2014). However, writing from Critical Disability Studies, many mothers have consistently argued that it is not their children that cause them distress, rather engaging with services supposedly there to support their families (Ryan and Runswick-Cole, 2008b). Indeed, it is through interaction with those services that mothers who fail to conform to the demands of the system are constructed as ‘mad’ (Douglas et al, under review). Understandably, many mothers of disabled children seek to reposition their children and themselves outside their designation as ‘mad’ and ‘bad’ through appeals to the norm. At times this means acceding to the demands of the medical model and an acceptance of their child’s ‘disorder’. This, in turn, often leads to the search for a ‘cure’ and an engagement with a host of psy-professional led interventions that seek to push their children closer to the norm (Tommey & Tommey, 2011). Others take a different approach by rejecting the medical model, as they celebrate their children’s diversity, rejecting normative expectations and the demands of the psy-professionals. Such resistance is often characterized as unreasonable behaviour and contributes to the categorization of mothers’ non-compliance as ‘madness’. Using and refusing the norm is a complicated, but necessary, task. Slide 16: Strategy 3 – Engage in ActivismImplicit in this discussion so far is the role of activism. O’Reilly (2013, p. 74) describes ‘advocacy-activism’ as formal and informal acts of resistance by mothers to patriarchy. Advocacy-activism from a disability perspective exposes and challenges ableism and dis/ablism (Douglas et al., in press). However, family activism, and maternal activism in particular, has often had to struggle for recognition. Maternal activism is criticized for being ‘emotional’ in ways that other forms of activism are not (O’Reilly, 2013). Indeed, activism by mothers of disabled children has been constructed as yet further evidence of their ‘madness’ (Douglas et al., in press). Mother-activism on behalf of children is, at times, validated in neoliberal contexts as the duty of mothers – especially if this activism is orientated towards mothers seeking resources to ‘cure’ or rehabilitate disabled children reducing their dependence on the state (e.g.: Tommey and Tommey, 2011). However, if mother-activists rebel against neoliberal-patriarchal-sanist-ableist standards of mothering, this merely confirms their stigmatized status as ‘mad mothers of disabled children’ (Douglas et al., in press).It is through their activism that mothers seek to create safe spaces for their children. Indeed, O’Reilly (2013) points to the ways in which black mothers seek to immunize their children from the harms of racist ideology and draws on bell hooks’ (1990) concept of ‘home place’ to describe places of nurture for children away from demands of white privilege. Similarly, Campbell (2009) describes ‘safe’ spaces for disabled people away from the omnipresent ableist gaze. Mothers of disabled children, too, seek to immunize their children from the profound effects of ableism and disablism through the negotiation of safe spaces for their disabled children.Slide 17 Future Directions …The global reach of the term ‘hard working families’ reflects the powerful grip of neoliberal-ableist ideologies (Goodley, Runswick-Cole and Lawthom, 2014). A critical disability studies perspective offers a powerful lens through which to trouble and to refuse the much repeated and seemingly ‘common sense’ appeals made to ‘hard working families’ that too often cloud analyses of the family. We need to refuse the individualizing tendencies of neoliberal ableism while remaining both critical of and demanding of the status of the norm. And we need to embrace activism with families who, for what ever reason, fail to live up to the mythical ideal of the hard working family. We need to move towards a politics of ‘we’, which accepts and celebrates diversity rather than succumbing to the bankrupt politics of ‘us’ and ‘them’. ................
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