Entrevista Marketing de Influencers: DequéBuzz

One aspect of the matrix of variables influential to support initiatives for intellectually disabled people includes ideas that originate from individualised/medicalised

conceptual frameworks. These frameworks theorise the relationship between the material presences of a (biological) body and how this body works in relation to the physical and social locations in which it is found (Shakespeare 1996; Scully 2002). These frameworks prioritise the idea of this body as a working unit, constructed and maintained through a network of physiological processes. Objective ‘mappings’ of bodily difference through assessing and categorising as data the presence of physical,

behavioural, psychological, cognitive and sensory inadequacy, characterises how this approach influences material practices. Acquisition of this data fixes the notion of a working standard against which further objective mappings can then be undertaken. Bodies whose activities conform to certain expressions of these working standards are deemed ‘normal’ while bodies that deviate from these (already developed) standards become ‘abnormal’ bodies (Scully, 2002).

Individual/medical approaches are primarily concerned with managing the presence of long term to permanent bodily differences that deem certain bodies ‘abnormal’ bodies. After being designated abnormal certain support practices are then put into place. Therapeutic intervention is the key to the dimensions these approaches cover with support interventions undertaken in the first instance to be curative or restorative, and then to be adaptive. Thus initially, support consists of restoring complete function to the body to the fullest extent possible. Only then it is geared towards adapting the environment to diminish the remaining limitations imposed by conditions that cannot be restored or cured (Finkelstein, 2001). At this time support does not just alleviate ‘problem’ conditions but seeks to reduce allied social senses of difference or strangeness any at-variance condition might impose on a material body (Price & Sheldrick, 2002). However, alleviating ‘problem’ conditions remains the dominant, preferred support priority.

Difficulties with an Individual/Medicalised Approach

This model has provided a very successful basis for support practice in that has been hugely successful in alleviating functional limitations imposed by many body-related conditions. However, fundamental difficulties in addressing how this model can adequately unravel the matrix of social and political variables that comprise disabling conditions and their support have been isolated (Scully, 2005). In particular, it is suggested that the central idea of elimination of bodily difference, or cure, presumes there can be only one way that a human body can be known and that this knowing is only possible through reference to a very limited set of biologically based

embodiments known as the healthy or normal body (Scully, 2002). Because of this central assumption medicalised/individualised strategies are unable to work with the idea that a ‘normal’ bodily shape is equally the basis from which a preferred status for

certain body types is interpreted “in accordance with cultural standards” (Scully, 2002, p. 48).

What the workings of this model hide is the idea that concepts of normality and abnormality do fit easily into a materially based conceptual format. In reality, the social and political contexts that construct key aspects of an individual’s daily life do not solely relate to ideas that originate from the concept of an essential body

(Shuttleworth, 2002). While this reality remained obscured, the data collection mapping exercise that creates the initial ‘evidence’ for ‘the condition’ found within the individual body cannot be seen as a particularly rigid and powerful form of social control. While this point remained obscured, it becomes impossible to raise any questions about the value of defining an individual bodily state in such a way. Nor is it possible to begin to examine what the social and political implications might be of ‘being defined’ in this particular manner (Shakespeare, 1996).

Cure Defines the Limits of the Support Role

The goal of medicalised/individual support strategies is the future point at which bio- technology will have advanced to the degree where individual bodies can be cured of any abnormality, after which no support will be necessary (Cheu, 2002). In the interim however these approaches do not solve all body related problems. Thus certain abnormal bodies remain actively problematic and ‘in need of support’ within this framework. Because curative dimensions are prioritised over adaptive solutions support strategies developed from individual/medicalised explanations can do little about any material, emotional and cultural difficulties that attend bodies less able to recover from illness than bodies that can. Thus little effort is made towards

widespread accommodation of a range of abilities within personal, social and political interpretations of what a body can do. Nor is it necessary for any effort to be made towards challenging the idea that issues of bodily ‘fitness’ might merely be a reflection of the attitudes and values of a data produced, statistical norm (Shuttleworth, 2002).

Intellectual Disability and Individual/Medicalised Approaches

Until recently the term intellectually disabled has been referenced through

individual/medical ideas related to bodily management. A variety of terms including feebleminded, subnormal, mentally deficient and moronic represented the data classifications that specified the grouping of individual bodies deemed unable to be cured. As cure was impossible in cases of ’intellectual disability’ these classification categories were used to physically separate these” organically diseased variants” (McIntosh, 2002, p. 6) from other members of the general population as the preferred support option.

Moves away from the idea of a physically separate system of support as the starting point for the management of intellectually disabled people’s requirements were based on systems of thought that encompassed the principles of Normalisation

(Wolfensberger 1972; McIntosh 2002). Aspects of these principles prioritised adaptive/habilitative rather than curative aspects of this conceptual model. The habilitative aspects of individual/medical concepts in particular underpinned initial moves towards the reintegration of intellectually disabled people in local community settings (Brown & Smith, 1992; Whitehead, 1992; Williams & Nind, 1999; Fullger et al., 2001).

Two Kinds of Support Principles

Two different ways of looking at support for intellectually disabled people characterise Normalisation-inspired principles. The Scandinavian idea promotes a philosophy of support for living an ordinary life in circumstances most akin to the “ways of society” (Williams & Nind, 1999, p. 660). Within this framework notions of individuality and choice are promoted as key quality of life indicators for each

intellectually disabled individual. Practical support is provided against the backdrop of the idea of the “least restrictive environment” service provision can create for each individual concerned (Whitehead, 1992, p. 57). In contrast the North American idea, termed Social Role Valourisation (SRV), emphasises an aspect of the principles that draw on already-established notions of what is culturally valued by society in general. Support is geared towards developing an empowering social status for intellectually

disabled people, on the assumption that improved social status will eliminate the difficulties members of this group experience (Williams & Nind, 1999).

Within this framework, socio-material aspects of the ‘ways of society’ provide the yardstick from which support is actioned. Key indicators of quality of life in this framework primarily relate to socio-material effects “such as housing, work and leisure activities” (McIntosh, 2002, p. 68) rather than support developed through the use of wider concepts of individuality and choice. These indicators are then used to measure the effectiveness of support enacted from these principles (O’Brien, 1994).

The Value of Normalisation Principles

As a conceptual tool normalisation principles were effectively able to decouple support from the notion of medicalised (passive bodily) care and reposition it within notions of (re)habilitative assistance. In doing so they promoted an understanding of the concept of intellectual disability that went beyond earlier considerations of the condition as a state lying beyond medical treatment, or more traditional teleologically based assumptions of the condition as an evil to be contained (Wolfensberger, 1972). Normalisation/SRV promoted what was heralded as a new era for intellectually disabled people through the promotion of access to support options that encouraged normalised rather than institutionalised styles of living. These principles took account the social as well as the physical contexts in which intellectually disabled people from institutional settings were living (Whitehead, 1992). They also provided a blueprint for support systems to concentrate on the individual rather than reiterating a total provision model characteristic of institutionalised support. However, while both sets of principles were underpinned by the (re)habilitative aspect of the

individual/medicalised notion of disability, SRV became the guiding principle widely adopted as the foundation for the development of support practice in New Zealand (Hunt, 2000).

Social Role Valourisation and the Role of ‘The Other’

Key difficulties have been found to underpin the concept of SRV as the basis for conceptualising support provision. Because SRV principles primarily link back to the existence of a material-only body, the processes of social inclusion through social

revaluation these principles propose continue to uphold the idea that mixing with bodies deemed normal, thus socially valued, will result in the acquisition of a

preferred status for those who are non-preferred. Thus although they draw attention to the role of the social context in the construction of intellectually disabled peoples lives, they do not disrupt the central assumption of individual/medicalised ways of thinking, that there are those that are deemed ‘normal’ and those that are

‘abnormal/deviant’. Thus they do not challenge ways of thinking that take for granted the idea that individuals need to continue to be categorised as favoured or non-

favoured, and that it is necessity to so do. As has been suggested, the processes of social marginalisation and devaluation contain far more complexity than just the result of the workings of unfortunate oversight (Brown & Smith, 1992). These difficulties call into question the effectiveness of using normalisation/SRV-based models as a methodological tool from which to undertake support practices.

Social Role Valourisation and the Role of Support

Because SRV ways of thinking cannot isolate or interrogate the role of wider social processes in the lack of social position already inhabited by intellectually disabled people (Valachou, 1997), the notion that abnormality is established through the presence of a valued social group continues to influence support processes associated with this principle. Yet in practice, those who are valued are not only valued at the expense of ‘others’ but those who are valued also become the “models of appropriate behaviour and the arbiters of what is valuable” (Brown & Smith, 1992, p.138) in relation to the devalued group. SRV ways of thinking obscure the idea that the forms of powerlessness created through the ascription of positive and negative valuations are themselves created by the presence of the socially valued group, who are also instrumental in the process of devaluing. Difficulties occur when judgement calls about worth and value at once position intellectually disabled people as inferior to more socially valued support personnel, while also positioning the same intellectually disabled people as gaining value through the actions of the group whose existence creates the position they are in. The support difficulties that arise when members of these two groups inhabit these contradictory spaces at the same time cannot be explored or reconciled within a SRV support methodology.

Social Role Valourisation and Normalising the Social Body

These conceptual difficulties mean that most intellectually disabled people will not be able to achieve full ‘normal’ status through SRV based support practices, as these ideas only provide a route to the acceptance of those who are most able to conform to specific normative categories (Valachou, 1997). From this point on it becomes more apparent that attempts to normalise intellectually disabled individuals inherent in SRV principles are not enacted purely for their benefit, but in order to “normalise the social body” (Keane, 2005, p. 91). Indeed being able to pass for normal only contributes to a further endorsement of the assumption that ‘abled is normal’. While this selection process further isolates people for whom normative status is not possible, it continues to underpin the continuation of the social credibility of those who comprise the normal population, i.e. the group who benefit from those who are able to ‘pass for normal’ (Williams & Nind, 1999).

Within SRV frameworks preferred social roles are assumed to be apolitical, thus SRV processes also cannot address the political tensions created when intellectually

disabled people are given value by socially valued others, rather than respect being held as inalienable (Whitehead, 1992; Young & Quibell, 2000). After this, developing an encompassing analysis that might uncover more empowering ways of viewing intellectually disabled people that might benefit the members of both groups becomes as impossible as it is unnecessary. Being apolitical the principles also sidestep other social issues that may be influential to the social value of both groups, such as gender, class, ethnicity and age. This restriction creates yet more points of difficulty in that when the role of the valued group itself remains unexamined, it cannot be seen that any power held by the valued group is itself only conditional. In reality SRV principles do not allow those in the ‘socially preferred’ group to be in any way

disabled. Thus they only offer “a route … to the elite club of physically perfect people who conform” (Williams & Nind, 1999).

Why the Pre-Eminence of Social Role Valourisation Principles?

Why SRV principles were adopted over principles that would establish support frameworks within the broader outcomes of individual choice in relation to a least restrictive environment, remains speculative. For some researchers and disability

writers the practice of institutionalisation has been seen as one outcome of a prior failure of community members to integrate intellectually disabled people into the social, economic, cultural and interpersonal aspects of local community life (eg Katz et al., 2000). Did accessing a community environment that remained shaped by prior exclusionary practices make it necessary for service systems to put time, resources and energy into the SRV “reparation of the disability” (O’Brien, 1990) framework, rather than working with the ‘least restrictive environment’ (Agar et al., 2001) aspect of support? Did having to negotiate the pervasive social barriers that

institutionalisation was the outcome of leave service providers with “little energy or incentive” (McIntosh, 2002, p. 69) to develop more long-term individualised support strategies that would work more effectively?

Or did adopting SRV models, rather than supporting intellectually disabled people’s development of choice and control, mean that service systems did not have to relinquish the aspects of social and economic control the principles themselves enabled (Davis, 1993)? Did service professionals, for their own ends, continue to opt for systems of support that related more easily and comfortably to funding measures designed to provide material support, rather than opting for the provision of ‘least restrictive’ service options for the intellectually disabled people they supported (O’Brien, 1990)? Answers to these questions remain open. Yet while they remain speculative the idea that the acceptance by service providers of the idea of stigmatised identities as culturally normative, critical to SRV principle philosophies, continues to obscure the idea that these principles themselves might be implicated in the

maintenance of intellectually disabled people in a subordinate position.

What Does Community Mean?

The hope normalisation/SRV principles held out was that putting the principles into action would enable people from long stay institutions to be supported to enjoy life in the wider community. However, as Lysack (1998) queries, is there any one

community into which intellectually disabled people can be normalised? What could be meant when the word community is used in the context of support for community participation within a SRV framework? Does the word refer to a physical locality or a concept of shared interests and values, the two most common meanings of

community? Does it refer to both? If there are other images associated with the word community for support purposes, what are they and how do they function within the idea of support for the full inclusion of people in this group? Within

normalisation/SRV principle frameworks what the term community can only mean is a location other than an institution or a segregated setting designed for intellectually disabled people. Placing community within this parameter means that the global “issue of ‘community participation’ ” (Bray & Gates, 2003, p. 2) or more

pragmatically, how intellectually disabled people might actively be supported to live any kind of a satisfying life, becomes a support problem that SRV principles cannot be fully address.

Normalisation/Social Role Valourisation and Support in New Zealand

Many strongly believed that putting normalisation-based principles into practice would create high quality lifestyles for intellectually disabled people in New Zealand. In other euro/western countries critiques of the principles were initially slow to gain momentum principally because of their strength as a powerful and all encompassing moral vision of how to action community-based service provision for intellectually disabled people. Support service training sessions introducing the principles to new workers encouraged unquestioning acceptance of their use as the basis for their work. Any doubts raised about aspects of the principles were firmly discouraged (see Brown & Smith, 1992). In some cases those who were sceptical of how the principles might be actioned were regarded as having “failed to acknowledge their own subconscious fears and unspoken negative values” (Chappell, 1997, p. 47) about those they supported, or their ability to grasp the essential elements contained in the concepts was called into question.

How these principles have been used and if they continue to be used in service and support practice in New Zealand is impossible to fully quantify. It is recorded that disability support providers even flew to Australia to engage in training sessions (Sullivan & Munford, 2005). It has also been suggested that normalisation/SRV principles “did have some success in improving service provision for intellectually disabled people” (Sullivan & Munford, 2005, p. 22) in New Zealand. Both points indicate a period of time where dissemination of these principles was active within

service delivery systems. However, it has also been noted by the same commentators that these principles did not address the reasons why the use of the principles were necessary in the first instance, pointing to a waning of enthusiasm at some stage for the efficacy of the ideas and their use as a support tool in this country.

Other comments suggest that SRV related principles in particular remain active within intellectual disability and support theorising and practice in New Zealand. The

principles are also seen as a contemporary “antidote to social devaluation” (Kendrick & Hartnell, 2005, p. 40), and as ideas on which support performance ought to be built. SRV should continue to be used by service systems as “ theories such as SRV can help a great deal to illuminate practical ways forward as well as raise

consciousness of what is at issue” (Kendrick & Hartnell, 2005, p. 43). However, while the principles cannot take into account the effects of antecedent factors that necessitate their initial use, how far it might be possible for service systems to use