Jennifer Clegg (JC)
- 50:50 clinical psychology service manager/contract researcher; also a psychologist working with sociologists
- Wonders about exciting new possibilities for academic research on LD (usually seen as a relative uninteresting (not ‘sexy’) academic subject-matter
- Too many questions not asked about the root concepts of LD; too many orthodoxies that we are asked to accept (as part of ‘governmental’ agendas [JC indicates wariness about neoliberal drivers of much LD policy)
- ‘Social constructionist’, taking seriously how PWLD are situated within networks of social relationships
- But must also acknowledge embodiment, and unavoidable differences between ‘mild’ and ‘severe’ LD – not entirely a matter of ‘social constructions’
- But central for JC is ultimately “our” response, less than the ‘nature’ of LD itself – but we must still strive for an ‘authentic’ account of PWLD (eg. taking real care over the older “sleeping soul” notion, which now returns in some recent ‘political’ discourses [implying that, after all, there is a ‘soul’ that can be activated in, say, demands for PWLD to become active, informed decision-takers])
- What is at stake in definitional shifts, especially more recently towards ‘intellectual and developmental disabilities’ (an administrative grouping, not a meaningful ‘identity’?) – status here of autism?
- Something old: JC returns to the ‘denial’ of disability – accepting that PWLD and their supporters do not want to be dwelling with negativity, and instead wish to remain hopeful/positive – but cautions about under-estimating the challenge/difficulties of ‘real’ lives as lived by PWLD (for both them and their families/carers)
- We must not gloss over real challenges/difficulties – a ‘language that is disallowed’, especially by present ‘political’ discourses – JC is instead wanting to take seriously the possibility of fostering a renewed capacity to ‘sit with’ the challenges/difficulties that really do face PWLD
- Something new: JC is excited by the potential of new ‘psychomotor therapies’ (possible alternative/complement to ‘talking therapies’) – designed to begin with the body, responding to the micro-dynamics of the body (eg. in motion), and dealing with real ‘emotional pain’ expressed somatically
- Something borrowed: JC returns to notions of ‘attachment’ (and the ‘spaces between people’ as investigated by ‘family therapy’) – importance of addressing ‘insecure attachments’ including over-attachments to, say, one parent – and JC wonders about how problematic attachments may have emotional correlates that may become embodied in various ways (link to the above remarks on psychomotor therapies)
- JC wonders about contribution of ideas about ‘belonging’ (cross-reference to Ed Hall’s work), perhaps linked to ones about ‘neighbouring’ and (after Deleuze) ‘becoming’ as the vitalities of interactions releasing vibrancy/’flourishing’ – can enough of all this be sufficiently emplaced in a PWLD’s everyday world?
- Something blue: returning to the idea of being able ‘to sit with things that are difficult’ such as loneliness, linking to the dangerous transience of ‘friendly’ encounters (can this be countered by a positive fostering of attachments, as remarked above?)
- We cannot avoid the institutional abuses revealed by the likes of the Winterbourne View scandal – staff abuses; residents’ concerns ignored; staff without training; no proper ethic of care; inevitable consequence of financial constraints/expectations; staff sent to prison, management not held to account – but do we then agree with the Margaret Flynn Report conclusion that we do not need these institutions?
- Cautiously, JC wonders about whether we can rehabilitate a form of institutional response: if we ‘sit with’ the real difficulties of/for some of the residents, is it not possible to envisage genuinely sensitive ‘institutional’ responses (ones energised by a genuine concern for attachment, becoming, flourishing, etc.)?
Andrew Jahoda (AJ)
- Clinical psychologist’s perspective, with much experience in institutional settings
- Responding to JC’s final points – AJ talks about first job at Strathmartin, Dundee, residential ‘hospital’ for PWLD, and a feeling of ‘guilt’ about working in such an institution – but acknowledges the need to recognise that such institutions were their ‘places’ (in a double sense, physical and social), which could be felt positively not just negatively – yet clear caution then needed about concluding that these institutions were indeed the right societal response to PWLD
- Stresses: (i) the emotionality of dealing with (certain) PWLD; (ii) the heterogeneity of this grouping (about who are ‘we’ speaking? for ‘who’ are we speaking?)
- AJ asks about the extent to which psychology (as discipline/literature) has influenced services for PWLD over the years, and a sub-text is the extent to which psychology becomes itself more socialised, and in the process more attuned to the importance of an individual’s relationship to the wider (social) ‘environment’
- Thumbnail history drawn from Binet’s IQ testing through to Jack Tizard / Anne and Alan Clarke – 1960s/1970s concern to overcome the bad effects of institutionalisation – towards a ‘social science’ approach concerned to change the environmental determinants of LD, wishing to create more welcoming everyday environments (Roy McConikie and ‘the role of the shopkeeper’?)
- Lev Vygotsky and developmental psychology – valuable advance in working out that PWLD learn better in a ‘dyad’ with another (in the ‘zone of proximal development’) – another version of socialising psychological perspectives
- Parallel cautioning about when psychology goes down a more overtly biomedical line – can be valuable (as in work on how it may be possible to read the emotional life of PWLD from eye movements) – but AJ remains unsure about experiments with brain ‘scanning’ and hence the shift to a biomedical ‘explanation’ of LD (to do with brain neurology), but thereby neglecting the ‘personhood’ of PWLD
- We do need to focus on individuals and their ‘resilience’, but also on broader social contexts, including being realistic about possibilities for providing support for PWLD both in and outwith institutional settings
- But here AJ addresses matters of ‘agency’, insisting that PWLD do indeed become repositioned as much more than just objects for ‘our’ (academic, policy) scrutiny – taking seriously PWLD as agents, as subjects, listening to their ‘voicings’ of emotional distress, etc. (but here AJ also recognises the real limits here to ‘talking therapies’, especially for PWLD)
- AJ reports on research with a PhD student on young people with mild LD, 16-17 years old, asking about what are their worries (not ‘our’ worries for/about them), contrasting with a control group of non-LD participants – marked difference: former – bullying, friends, loneliness, death (of a loved on who provides essential support), a broad sense of ‘being useless’ and a deep concern about their ‘incompetence’; latter – jobs, money …
- Implications to draw? Society has not achieved what it needs to in terms of fostering social inclusion of PWLD, but the core issue cannot straightforwardly be about providing ‘jobs and money’ (standard policy indicators of social inclusion being achieved?), important as such elements remain – it needs also to be about taking seriously the first set of worries identified here by PWLD themselves (in JC’s term, learning to ‘sit with’ these difficulties) – and hence a broadened out sense of a social struggle
- There needs to be a working towards the creation of possibilities for PWLD to lead a ‘purposeful life’, one (but only one) element of which might be the role of work
Marcus Redley (MR)
- A sociologist, working alongside clinical and legal scolars, animated by a question ‘how do we, the affluent and able, see ourselves in relation to others, the less affluent and able?’
- Brief discussion of (critical) disability studies – on tensions / possible complementarities between a models of ‘disabling’ social attitudes/arrangements and classical sociological models of ‘deviance’ – but adds that focussing on PWLD need not preclude taking seriously both ‘social’ and ‘medical’ models of disability
- Relatedly, MR argues that taking seriously the differences of PWLD is essential on occasion, if sometimes controversial – it remains unavoidable to identify the real limitations for many PWLD in more legalistic terms (eg. as to whether they can provide their informed ‘consent’ in a patient context) or even politico-legally (eg. what does it mean to claim the right to vote for PWLD when the making of a vote demands, seemingly, a minimal ability to make rational judgements on complex, abstract matters [hard enough for all of ‘us’]?)
- Hence, MR confronts the importance of recognising real / measurable impairments which are ‘limitations’ on what PWLD can do and what should be expected of them – and which arguably do demand that special ‘compensations’ be made
- He confronts what are now too often over-looked – namely, what for many PWLD, especially if defined as ‘severely’ LD, comprise the severe, obdurate realities of their real, embodied state
- MR thus wants a more nuanced understanding of LD and asks the following difficult questions: can greater precision be introduced around IQ scores?; what about developing more ‘functional’ definitions, and should we speak about ‘neurodevelopmental sydromes’ (and hence about syndrome-specific services/interventions)?; should we introduce ‘genotype’ vocabularies (could this maybe allow some people to receive care more targeted to their specific needs)?; what problems are being introduced by the proliferation of different definitions in the third sector/advocacy world (and on whose behalf are these definitions speaking?)?; should LD disappear as a now undeeded/unwanted ‘administrative title’?
- MR wishes to explore the formal statements of equality enshrined in the likes of the UN Convention on Human Rights (Article 12), which risks promulgating the belief that all PWLD, with appropriate support, can be ‘legal’ decision-makers – hinting too at a bigger problematic of what it means to position PWLD, or indeed any of ‘us’, as capable, rational decision-makers (the standard ideal of the ‘legal subject’)? – as well as to complex questions about the intersection of sensory-perceptual and social ‘barriers’ to decision-making
- How do such statements equate with the reality of many PWLD only being able to make decisions in a thoroughly supported fashion? – whether supported by those closest to them or in the guise of state-supported decision-making (by advocates/substitutes)? – and may depend on the character of the decision to be made (a voting decision? a medical decision [which could lead to illness/dealth]?)
- MR wonders about ‘human solidarity’ (a version of claims from both JC and AJ?) – ‘we’ are afraid of being touched by those who really are different, of being called into a sense of our common/shared humanity with those who are different, of being called to respond to their situation and requirements (particularly if ‘we’ need to act to provide genuine ‘solidarity’ with them) – the overall huge problematic of working between/across ‘Sameness’ and ‘Difference’
- Exclusions (of all kinds) of those who are different enables us to keep ‘our’ fears at bay; it helps, reciprocally, to cement our sense of ‘our’ selves as autonomous, rational, etc. – it neglects ‘our’ own vulnerabilities and weaknesses … – the possibility of sustained friendship (recall JC’s remarks) could be a challenge to this manoeuvre
- Difficulties of finding ‘the right language’ to discuss these complex, challenging matters; difficulties of ‘intersectionality’ – here meant as how to begin creative intersectional work between the many ‘disciplines’ involved in LD research
- What ‘disciplines’ might be conspicuously absent from the event – linguistics? (given key significance of communicational issues in PWLD research)
- Question about whether this section has really engaged with a scientific perspective on LD? – all sciences cannot but be ‘cultural constructions’ at one level, but also recognition that such a claim need not mean that LD is only a construction, a naming, an arbitrary designation – such a claim problematically assumes that LD has no anchoring at all in a material world of embodied, obdurate reality
- All three presentations (by JC, AJ, MR) weave in and out of this latter issue, adopting a stance that neither prioritises, say, a biomedical/clinical psychological essentialism nor a sense of unfettered ‘constuctionism’ – the ‘truth’ lays thoroughly in-between – all three adopt a kind of qualified ‘realism’?
- Worries, nonetheless, about a language of difficulty and ‘deficits’ when striving to address head-on the differences – immediately sets up stark comparison of what is lacking relative to the supposedly non-deficient, competent, rational adult, etc.
- Big discussion of the biomedical/genomics position in relation to LD research – in short, addressing head-on the possible criticism that much of this research operates with an ‘unspoken’ goal of wishing to eliminate PWLD (finding screening and other devices to ensure that they need not be born in the first place: a new eugenics)
- Discussion of friendships/sociability – set within broader debates about social inclusion – and thoughts arise about friendships across the ‘divide’ between PWLD and the so-called rest of ‘us’ – what ‘spaces’ might facilitate such friendships in a meaningful fashion?
- What about the value of fundamental friendships/sociability amongst cohorts of PWLD? – is it wrong to value ‘community-making’ by/amongst PWLD themselves? – often seen as problematic because it potentially creates another kind of set-apart ‘space’, and hence departs from standard models of social inclusion (usually configured about including ‘them’ with ‘us’ not ‘them’ with ‘them’)
- Broader point about needing to get beyond the ‘deconstructive’, the critical – often the default position for, say, the social-scientific treatment of LD (what is wrong with the current societal/governmental response to LD?) – to offer a stronger sense of the ‘constructive’, the optimistic, the ‘working with’ others (PWLD included) to foster better alternatives?