Rethinking Learning Disability Seminar Series: overall statement of purpose

Rethinking Learning Disability: Contexts, Voices, Policies

Context and content

Academic dialogues

Significant changes are occurring in the academic study of learning disability (LD), notably as social scientists from a range of disciplinary backgrounds question the ‘nature’ of LD as a clearly identifiable, delimited and understood category of being human.  Notwithstanding certain risks that attach to stereotyping how medical and psychological discourses have previously dealt with learning disability, and even given crucial distinctions drawn within prevailing ‘scientific’ models about different types (‘grades’) of learning disability,[12] it remains the case that a certain ‘naturalness’ of the category – its ultimately invariant, foundational, even quite obvious ‘reality’ in an under-developed human mind, linked to forms of bodily dysfunctionality, all routinely assumed to manifest in children and young people – has, for the most part, been taken-for-granted [1, 12, 19].  The history of this condition (certainly in the Global North) has hence been commonly written as a progressive discovery of this reality, a successive peeling away of misunderstandings and prejudice, to reach the point where past conceptions – anchored in problematic terminologies of ‘fools’, ‘idiocy’, ‘feeble-mindedness’, ‘mental handicap’ and ‘mental retardation’ – have now yielded to an accurate and appropriate appreciation of the genetics, biochemistry and epidemiology (and co-morbidities) of LD (or, in a family of related terms, intellectual or developmental disability).  In so doing, the ultimate authority of medicine and psychology to speak about, and to direct policy outcomes for, people with LD (PWLD) remains largely unchallenged.[16]

Various historians [6, 13, 19], geographers [5, 8, 9, 10, 15, 20], anthropologists [12], philosophers [6], disability studies scholars [2, 5, 7] and others have begun to query this picture, however, and in so doing to create a new critical account of LD.  In particular, scholars have explored the variable constructions of LD present in different times and places, taking seriously the content of past and alternative vocabularies (and attendant conceptual systems), seeing such constructions less as error – as poor approximations of some ‘truth’ only now properly understood in the developed West – but rather as entirely comprehensible when set against the economic, political, cultural and intellectual contexts of their nurturing and application.  Such a perspective, pushed to its logical conclusion, cannot but also regard current constructions in a similarly critical light.  Such a claim does not mean denying that modern biomedicine and neuropsychology may have a better grasp on facets of LD than their historical predecessors or contemporary folk-medicines, since to do so is to slip into a naïve relativism, as well as to shut off possible lines of productive dialogue between the social sciences and the ‘sciences’ of LD.  Yet, an emerging message is that we neglect the specifics of context, even of the contemporary moment, at our peril, a claim of salience if we are indeed to turn the critical insights of recent scholarship on to the contours of the contemporary policy landscapes faced by PWLD.  The first aim of the seminar series will be to encompass current academic dialogues around LD, part of which will entail interfacing social-scientific perspectives with ‘scientific’ ones, in order to begin working towards a contextually-sensitive framing of LD that can travel beyondthe realms of the academy.

Policy dialogues

Significant changes are also occurring in the real world policy landscapes confronting PWLD, notably as the push from the later-20th century to ‘deinstitutionalise’ PWLD – the closure of the large residential facilities in the hope of fostering alternative ‘care in the community’ arrangements – is now mutating into a still more complex set of responses where it is the individual PWLD who is centralised.  Indeed, post-2000 governmental initiatives such as Valuing People (England) and The Same as You? (Scotland) have prioritised individualisation, personalisation, independent living, self-directed support and (the specific mechanism) of ‘personal care budgets’.  Arguably, such initiatives – while entirely laudable in many respects – nonetheless risk de-contextualising the PWLD, seeing him/her in atomistic isolation from the place-specific situations of families, communities, neighbourhoods, labour markets and wider welfare/health care networks.[3, 4]  What has usually been taken-for-granted as a defining feature of PWLD, the notion of their additional support needs, now becomes oddly muted: somehow they are supposed to conjure ways of supporting themselves (the ‘same’ as everyone else).  One consequence is hence to obscure the economic imperatives that also play in the decisions of (different tiers of) government when responding to LD, with evidence suggesting that local authorities are making significant adjustments to thresholds of risk and need to meet their obligations in the face of diminishing resources.  Some have openly restricted services for PWLD, acknowledging responsibilities only towards those with more severe, profound or multiple disabilities, and implicitly denying that many PWLD have any need for additional support.[18]

An irony perhaps is that some of the policy shifts referenced here have clearly been influenced by aspects of the newer, critical scholarship on LD as discussed above, notably where such scholarship has demanded attentiveness to the everyday experiences of living with LD by people who do think and feel, even if in ways departing from assumed norms of mental capacity.[21]  In this assertively people-centred focus, the voices of PWLD, or at least of those who are their guardians, carers and advocates, start to move centre-stage, almost inevitably leading to claims emerging ‘from below’ about the inadequacies and abuses of prevailing regimes of accommodation and treatment.  In the process, many if by no means all extant responses to LD, sanctioned by versions of medicine and psychology, become open to criticism, at which point critical scholarship joins hands with ‘rights’ discourses in assessing the wrongs of past/present regimes as a possible signpost for what might be improved in the future.  This alliance has manifestly impacted upon LD policy, in that a ‘rights-based’ approach, laying stress on the rights to self-determination of the individual PWLD as a citizen like any other, readily flows through into the emphases on individualisation, etc. in the current LD policy portfolio.   For all the seeming gains of such an approach, however, a critical lens ought to be trained back upon its underlying assumptions, notably the extent to which it has perhaps become overly entangled with neo-liberal agendas of ‘active citizenship’ and the responsibilities of the subject.  At the same time, research with PWLD, attempting to discern their voices, wishes, hopes and fears, sometimes suggests, to operate with the Scottish terminology,[17] that – while, rightly, insisting that their underlying aspirations, for dignity, respect, care, love, voice, etc., are indeed exactly ‘the same as you’ – they might prefer on occasion for aspects of their difference to be acknowledged, taken seriously and maybe reinstated in some dimensions of policy.[8, 9, 11].  These are very complex matters demanding proper informed reflection, but a contextual sensibility may demand that we beware of essentialisms lurking just as problematically in the here-and-now as they ever did in any past times or places.  The second aim of the seminar series will hence be to stage policy dialogues, drawing directly from both academic debates and attentiveness to PWLD voices, to articulate still more sharply what a contextually-sensitive framing of LD may actually do, constructively but also critically.

The seminar series

The concept is to run a 3-seminar series (S1, S2 and S3), with each one-day seminar progressively building on the previous one(s) through a deliberate reporting back on what went before, as a means of setting the stage for deepening dialogues designed to: (i) rethink LD as a social phenomenon set within variable time-space contexts at different scales; (ii) bring in the voices of PWLD as a resource/provocation for such rethinking; and (iii) bridge across from academic dialogues, via voices of PWLD, into the realms of policy.  Seminars will be combinations of short paper presentations and rejoinders, round table discussions, Q & A sessions and some more experimental, performance-based activities designed to stimulate debate (in S2 with the help of ‘facilitators’ and ‘illustrators’).

The objective is for the seminar series itself to achieve impact as a catalyst for academic and policy dialogues that will ‘spark off’ from the series to have an influence in parts of the academy (social-scientific and scientific) with an LD interest, and on the wider LD policy landscapes.  It is possible that it will generate some controversy, given the very different intellectual-ethical-practical positions taken by different cohorts attending the series, but arguably such an outcome, if occurring within a milieu of mutual respect, would be productive not destructive.  Indeed, the aim is to arrive at a broadly agreed contextual model of LD, which would be conceptual, ethical and strategic in its remit (rather than concerned with the direct ‘nuts and bolts’ of policy), with some potential to meet the proposal (iii) above.

In support of this objective, it is proposed to ‘scale up’ from the immediate environs of the series itself by making publicly available a taste of its proceedings, findings and conclusions via a dedicated seminar series website and blog.  Audio-visual records will be created of the seminars, and edited as materials to be linked from the website, and in part this web-presence will facilitate the developmental character of the series.  Participants at the second and third seminars will be encouraged to consult these materials ahead of their event, but the ambition will be to advertise the website widely to interested academics, policy-makers and the wider public.

References

[1]Campbell, F. K. (2009). Contours of Ableism: The Production of Disability and Abledness. Basingstoke: Palgrave Macmillan.

[2]Chappell A.L., Goodley D.A. & Lawthom R. (2001). ‘Making connections: the relevance of the social model of disability for people with learning difficulties’, British Journal of Learning Disabilities, Vol.29, pp.45-50.

[3]Emerson, E. & Hatton, C. (2008a). People with Learning Disabilities in England. Lancaster University: Centre for Disability Research [CeDR].

[4]Emerson, E. & Hatton, C. (2008b). Estimating Future Need for Adult Social Care Services for People with Learning Disabilities in England. Lancaster University: Centre for Disability Research [CeDR].

[5]Gleeson, B. (1998). Geographies of Disability. London: Routledge.

[6]Goodey, C. F. (2011). A History of Intelligence and “Intellectual Disability”: The Shaping of Psychology in Early Modern Europe. Farnham: Ashgate.

[7]Goodley D.A. & Roets G. (2008). ‘The (be)comings and goings of developmental disabilities: the cultural politics of ‘impairment’’, Discourse: Studies in the Cultural Politics of Education, Vol.29, pp.239-255.

[8]Hall, E. (2005) ‘The entangled geographies of social exclusion/inclusion for people with learning disabilities’, Health and Place, Vol.11, 107-115.

[9]Hall, E. (2010) ‘Spaces of social inclusion and belonging for people with intellectual disabilities’, Journal of Intellectual Disability Research, Vol.54, s1, pp.48-57.

[10]Hall, E. & Kearns, R. (2001). Making space for the ‘intellectual’ in geographies of disability. Health and Place, Vol.7, pp.237-246

[11]Holt, L. (2003) (Dis)abling children in primary school spaces: geographies of inclusion and exclusion. Health and Place, Vol.9, pp.119-128.

[12]Jenkins, R. (Ed.). (1998). Questions of Competence: Culture, Classification and Intellectual Disability. Cambridge: Cambridge University Press.

[13]McDonagh, P. (2008). Idiocy: A Cultural History. Liverpool: Liverpool University Press.

[14]Metzel, D.S. (1998) Approaching Community: The Residential Location Decision Process for People with Developmental Disabilities. Unpublished PhD thesis, University of Maryland, Department of Geography.

[15]Philo, C & Metzel, D. (2005) Theme section on ‘Geographies of intellectual disability’, Health & Place, Vol.11, No.2.

[16]Radford, J.P. (1994). Intellectual disability and the heritage of modernity. In Rioux, M. & Bach, M. (eds) Disability is not Measles: New Research Paradigms in Disability, Toronto: Roeher Institute.

[17]Scottish Executive. (2000). The Same as You?  A Review of Services for People with Learning Disabilities. Edinburgh: Scottish Executive.

[18]Simpson, M. K. (2007). Community-based day services for adults with intellectual disabilities in the UK: a review and discussion. Journal of Policy and Practice in Intellectual Disability, 4(4), 235-240.

[19]Simpson, M. (forthcoming). Speaking the Truth of Idiocy: Towards a Discursive Theory of Intellectual Disability. Lampeter: Edwin Mellen Press.

[20]Walker, P. (1999). From community presence to sense of place: community experiences of adults with developmental disabilities. Journal of the Association for Persons with Severe Handicaps, Vol.24(1), pp.23-32.

[21]Wolpert, J. (1980). The dignity of risk. Transactions of the Institute of British Geographers, Vol.5, pp.391-410.

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