Seminar 1 Session 2 History, geography and the social contexts of learning disability

PAPERS

Chris Goodey (CG)

  • Historian dealing with the time element of contextualising (the study of) LD, adopting a broadly ‘cultural constructionist’ line – accepting that claims ‘at the time’ (historically) were usually taken as referring to a ‘real’ object/problem
  • CG’s own background: personal motivation (child with LD) and currently involved with families in user-centred planning
  • Little serious work to date on the history of LD, and that which can be found tends to start with the rise of institutions (asylums): few ‘professional’ historians have tackled the subject-matter, David Wright being a notable exception, while some social and cultural historians have touched upon it; some ‘non-professional’ historians, and CG asks about their ‘occupations’ (PWLD and their advocates have contributed oral/written accounts of institutional experiences; medics have written ‘in-house’ histories of particular institutions).
  • In terms of approaches/methods, there have been various ‘positivist’ histories assuming that LD is a ‘natural kind’ (an enduring feature of the human physical-mental condition), producing quite ‘hard-line’ accounts (Leo Kanner) with a ‘presentist’ cast (identifying a ‘miraculous’ transition from a bad past to a good present: from prejudice to enlightenment) – or very occasionally positing the stark reverse (a ‘Trotskyist’ sense of everything getting progressively worse)
  • On CG’s ‘grid’, you cannot necessarily find neat patterns – eg. a ‘positivist’ scientist (working in the LD field) may not necessarily produce a ‘positivist’ history
  • Important to distinguish between ‘labels’ and ‘defining characteristics’ – to look beyond the former to the latter – and  here CG argues that the history of LD is not simply a matter of different ‘labels’ replacing one another but all, at bottom, delimiting the same phenomena identified according to the same ‘defining characteristics’
  • Indeed, he argues that careful historical inquiry reveals no historical stability in the ‘defining characteristics’ – it is not just the ‘labels’ that vary but, seemingly, the ‘reality’ of the phenomena being labelled – and, as such, his conclusion is that LD is not a ‘natural kind’
  • Fundamentally different things were being identified at any one time, and so the historical variability is far more than just a matter of changing names, but rather of changing ‘real’ human targets
  • But CG is not a complete relativist, because he supposes that there is some ‘patterning’ in the sorts of human ‘out-groups’ who become caught within the shifting definitional/labelling mesh (that we might now mistakenly take as an historical family of terms all ultimately clustering around what ‘we’ now understand as LD) – many of those ‘out-groups’ look nothing like what ‘we’ now might take as the population of PWLD
  • The historical stability here lies solely in the negative projections of a given period’s ‘in-groups’ directed at their despised ‘out-groups’ (their unwanted ‘others’) – it could be Jews; it could be people with physical and mental differences
  • Various theoretical conceptions can be wielded here, and CG mentions: (i) Mary Douglas on ‘purity and danger’, bound up in the fear of ‘dirt’ (and everything/everyone then coded as somehow ‘dirty’); (ii) René Girard on the ‘scapegoat’ mechanism; (iii) A.R. Moore on ‘the persecutory imagination’; (iii) theories from social psychology proposing an innate human tendency to discriminate according to labels; (iv) Joseph Garbel – psychologist-turned-historian – on the brain’s identificatory faculty becoming ‘delusional’ under the press of particularly ‘authoritarian’ societies (a ‘morbid rationalism’)

Ed Hall (EH)

  • Geographer dealing with the space element of contextualising (the study of) LD
  • ‘Minor lineage’ of geographical work on LD – compared to work on geographies of physical disability and on geographies of mental ‘illness’ – positioned by EH as part of a broader critical disability scholarship in effect already taking seriously how ‘spaces’ of society can generate / be permeated and shaped by inhospitable exclusionary dynamics
  • EH flags the advances of the ‘social model’ of disability, but notes certain problems arguably attaching to a too-comprehensive distancing from attention to the materialities of the (differently able) body
  • Towards new work (by EH and AP: see below) on everyday social geographies of LD – of people self-identifying as PWLD and as so identified by others (not always the same thing) – work mapping  the spaces/places of everyday life for PWLD, detecting lines of mobility, where they feel safe/unsafe, their (unavoidably spatially distributed and constituted) networks of friendships and support systems – work tending to disclose very limited spheres of activity and experience
  • This work often depends upon qualitative research with PWLD, whose own accounts can seriously disrupt common assumptions, including the taken-for-granted ‘truths’ of, say, social inclusion discourses – eg. revealing that a workplace where, on paper, they have become socially included is actually thoroughly alienating for them; eg. capturing the paradox of a day centre for PWLD, by prevailing wisdom a space of social exclusion, nonetheless being experienced as a place of deep belonging (hence inclusion); eg. sites of ostensible dependence (with families and carers, even forms of institutions like day centres and drop-ins) being regarded as good ‘from within’ by those inhabiting and utilising them, yet commonly being damned as wrong from without (not fitting in with the imagery of the autonomous/independent individual)
  • A broader problematic emerges from such work that critiques trajectories towards independence without care – exposes the flaws of a neo-liberal, autonomy-based model – questions whether alternative framings might be possible (for instance, ‘justice’ rather than ‘autonomy’)
  • EH seeks to get beyond the ‘bad stuff’, though, and edge towards ‘hope’ – nb. very similar to the tone of JC’s presentation – towards possibilities for realising ‘belonging’ for PWLD in new, other, creative, notably ‘arts-related’ ways; tracing PWLD who are on ‘a pathway’ which is at heart about the doing of ‘belonging’ – a ‘transformative belonging’
  • Some of these experiments might be occurring in private spaces/places, but being connected to known/unknown others in a wider (esp. but not exclusively arts) arena – gaining a foothold in ‘mainstream’ spaces/places; a small, even quite random, temporary ‘securing’ of a pace in the world, but with a link to/affect upon ‘others’ (in which case the PWLD concerned and their contributions become a highly positive ‘gifting’ to the wider world) – a connection arguably far more valuable than what might arise through inclusion in a standard workplace or through some version of semi-independent living
  • Hence towards a rather different story of what social inclusion can and should be
  • EH is thereby led to ask what becomes of difference if we reject the simple binary models: can we envisage ‘differentiation without exclusion’? how do ‘we’ (all of ‘us’) recognise and live with/alongside difference?
  • Horizon-scanning, particularly regarding geographical work on LD: (i) LD will remain a minor concern for geographers, not least because the once-burgeoning study of disability by geographers has lost some of its specific point (becoming somewhat blurred within a much wider terrain of concern for embodied geographies); (ii) the focus on the scale of home/everyday spaces will remain, but the agenda should include some up-scaling to questions about LD, the state and citizenship (after decades of activism, PWLD are still not seen as rightful ‘citizens’ of Western societies); and, relatedly, (iii) attention must confront the ongoing rolling back of the state, notably in how the very category of LD now comes under threat (as thresholds rise for who is deemed a PWLD and more people are told that they no longer ‘qualify’, what happens to the massive grouping caught in the middle [between being formally declared as PWLD eligible for benefits and the ‘normal’ able workforce] – a new ‘missing majority’?)

Andrew Power (AP)

  • Also a geographer (like EH), but focussing here at a wider context of social policy studies into LD: much of his recent work is on disability, policy and law, but always taking seriously local/regional specificities in how law (including in the realm of LD) gets translated from national ‘assembly’ level to ground level
  • AP talks about three sets of social-contextual intersectionalities: (i) inclusion; (ii) personalisation; and (iii) capacity – asking about the extent to which these intersectionalities can indeed contribute toward PWLD living ‘a good life’ (after Johnson & Walmsley’s notion)
  • But AP also seeks to explore four ‘parables’ to do with PWLD attaining: (i) freedom; (ii) reason, wisdom and passion; (iii) duty and virtue (ie. exerting self-restraint versus merely seeking pleasure); and (iv) ‘happiness’ (as the never-ending quest) – to an extent, AP wishes to narrate these parables through the ‘view from below’, and to relate how the attainment of (i) to (iv) by the bodies/minds of PWLD is so often challenged by an individual’s sense of vulnerability and fragility
  • Inclusion: supposedly guaranteed, in policy framings, by the accomplishment of ‘normalisation’; hinging on moving beyond mere community presence to fuller community participation; bound up with abstractly posed ‘rights’ agenda (the right to be included) – take the English Valuing People framework, predicated on a PWLD being able to move towards ‘a life like any other’
  • AP worries about an ‘implementation gap’ in this respect, tied up with a ‘denial of disability’ in the underlying framing – a denial of real difficulties for PWLD in becoming included (in conducting themselves as the kinds of subjects envisaged in the particular construct of inclusion in play here); and also a denial of the difficult realities of the peoples, places, communities, etc., who are supposed to become inclusive of PWLD (who rarely approximate the ideal envisaged in the policy rhetoric)
  • In this latter respect, AP discusses the likes of poster campaigns seeking to create more ‘welcoming communities’ into which PWLD could be included – as counterposed to the large and growing % of hate crimes against PWLD.  AP is hence taken back to questions about whether ‘protection’ (of PWLD) ought to be returned to the agenda, with not all eggs put in the basket of inclusion (and freedom)
  • Personalisation: a ‘utopic vision’ positing of PWLD as rational decision-makers who can appropriately, in an informed fashion, make choices about their preferred (and supposedly best for them) basket of services – but much the same ‘denial of disability’ as noted above
  • Also, the reverse side of personalisation – of everything becoming about individualised care packages – is the erosion of more collectivist sites of care.   AP discusses this eroding support landscape ‘on the ground’, arguing that collectively-provided services, even ones operating in and out of identifiable sites of care for PWLD, still need to be part of ‘personal care plans’ – as ones offering, if nothing else, opportunities for ‘social encounter’ – which should therefore not be so deeply decollectivised
  • The emphasis on ‘personal budgets’ arguably heightens a popular (mis)conception of PWLD as benefit ‘scroungers’ – hence, AP identifies a ‘perfect storm’, wherein PWLD face this eroding landscape of care (and wherein some people with mild LD may even face cessation of their benefits) while still facing critical/hostile public views about (wrongly) receiving (over-) generous benefits
  • Capacity: tied into the provisions of the Mental Capacity Act (2005), assumptions are made about PWLD having capacity (eg. to cope with personal care planning/budgeting) provided that this capacity is properly ‘released’ – but some research expressly demonstrates that often such capacity simply cannot be ‘released’ (if it is indeed there at all) within precisely the kinds of situations where the talk is all about the likes of ‘inclusion’ and ‘personalisation’
  • AP’s own research identifies the constant/everyday languages and practices of ‘inclusion/exclusion’ that end up bombarding many PWLD; he references Val Williams’s micro-sociological (‘conversational’) analysis of how ‘inclusive conversation’ can actually ‘disable’ PWLD – threatening their capacity to perform the kind of subject-hood demanded by such conversation
  • Down to the micro-level operationalisation of macro-level hostilities to PWLD (where obsessions with inclusion, etc., arguably become not supportive of but hostile to the needs, preferences, etc. of PWLD themselves) – in which case, AP discusses the ‘high wall’ between PWLD and the rest of ‘us’, made of countless ‘small bricks’ and the ‘mortar’ of (mis)communication
  • New horizons for consideration – the changing roles and responsibilities of (formal and informal) disability support services
  • Changing epistemologies and possibilities for new forms of participative research
  • Final nod to John Law’s ‘after method’ principles, probably as a lens on everything that AP has been discussing about shifting policy landscapes for PWLD: note the danger that, in trying to simplify a ‘mess’, you will only make a bigger ‘mess’ in the process …

DISCUSSION

  • Need to acknowledge the tiny strategic benefits of the ‘rights’ agenda – and its person-centred emphasis – that have been gained for PWLD in the teeth of opposition/indifference; and hence to beware social scientists who seem to be saying that ‘rights’ do not matter and that ‘personalisation’ is rubbish.  The latter line of critique could offer another excuse not to do anything or simply to re-invent ‘the institution’
  • Some agreement, but also others insisting that we recognise how the good intentions within the ‘rights’ agenda have too easily become subverted by the consumerist/neo-liberal turn (with its obsession about personal choice)
  • We need to appreciate how neo-liberalism derives from the same liberal roots as the ‘rights’ discourse, but that the versions of neo-liberalism now in the ascendancy become desocialising – when older versions of liberalism were always supposed to be social, proposing a ‘social contract’, not an individualistic relationship with an underpinning political economy
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