Cascajares

While many social model principle inspired initiatives have concentrated on the analysis and removal of tangible barriers contributing to the social exclusion of those who are physically impaired, the concept of rights and social justice have become more influential in contemporary policy and practice development in the intellectually disability field (Armstrong, 2002; NACHD, 2003). These notions have been most significant in respect of reconceptualising the meaning of intellectually disabled support in terms of social justice and citizenship rather than in respect of either impairment effects or rehabilitative ‘need’ (Armstrong, 2002).

For intellectually disabled people, self-advocacy or “the demand to be heard, to make choices and to exercise civil rights” (Armstrong, 2002, p. 336) has become the means through which equal treatment claims can be asserted. Rights based initiatives to enhance support in the sexuality area hold out hopes that agency services and workers

will be able to develop a constructive way forward from current support practice impasses. However, while notions of human rights at first appear to be wholly positive, some query whether these approaches will create the circumstances necessary for the development of a more rounded quality of life for intellectually disabled people.

Allowing the Right – How much does it enable?

Rights based approaches recognise all intellectually disabled people as legal citizens and as equal to non-intellectually disabled people. From this perspective the social and material inequities intellectually disabled experience arise from a failure to “do justice” to members of this group (Young & Quibel, 2000, p. 747). Policy and practice frameworks designed within rights based parameters can be used to redress the legacy of inequality left by prior practices. Yet although rights based perspectives also pinpoint the existence of social inequalities, like SRV principles these

perspectives can fall short of addressing “the misunderstandings from which the inequities originally stemmed” (Young & Quibel, 2000, p. 747).

Merydyth suggests that the difficulties inherent in rights based approaches arise from the historical development of the notion of rights themselves. Rights, rather than having been developed through informal and interpersonal processes of thoughtful arbitration, are “established by common law precedents” (Merydyth, 1997, p. 810). Within western legal systems these precedents have been developed and expressed through the civil obligations incumbent on the idea of the ‘reasonable man’ relative to examples of individual culpability. Within legal systems individual culpability and obligation is linked to the notion of redress, based on whether the moot “would a reasonable man do the same in similar circumstances?” (Warner, 1996, p. 100) draws a yes or no response.

Within frameworks that rely on the basis of precedent, explanations about why some groups of people experience social conditions that deprive them of the means to dignity, comfort, peace or security can only be considered within conceptual

parameters that include notions of accidental oversight, ignorance or bad management on the part of one key individual or a key group of individuals. However, linking

deprived social conditions to these conceptual parameters is to infer that all that is necessary to redress social deprivation is to rectify the oversight, re-educate the ignorant, or correct bad management practices. Thus while legal rights themselves remain tied to the “dictates of virtue” (Keane, 2005, p. 93), assumptions that drive the ‘reasonableness’ of human nature inherent in the construction of the doings of the ‘reasonable man’ (Merydyth, 1997) detract from any examination of the goodwill- neutral complexities that sustain the matrix of conditions of power and powerlessness on which the complexity of social practice is based (Van Houten & Jacobs, 2005).

This realisation has lead some disability commentators to suggest that rights based policy positions may end up merely reflecting “attitudes of social paternalism” (Brown et al., 2000, p. 6) rather than providing solid pathways towards the provision of more inclusive forms of assistance to intellectually disabled people. At a more pragmatic level it has also been suggested that any benefits rights based legislation might accrue also depend on the ongoing goodwill of governments to continue to provide adequate funding for systems that protect the accessibility of rights based complaints, and to oversee the politics of court systems (Clear & Gleeson, 2001).

Rights Based Principles and Sexuality Support

Using rights based approaches to effect material change have had limited success in the promotion of social change for intellectually disabled people in relation to service delivery generally and in the area of sexuality support up until this point. Possible reasons for this are diverse. As not all intellectually disabled people are positioned similarly in relation to aspects of sexuality, intimacy and relationships, being able to develop a coherent rights-based agenda suitable for ‘the rights of all’ within a context that prioritises the right-to-action on an individual basis may be a difficult task.

In relation to sexual abuse, where the notion of individual rights arguments have encouraged changes to support practice, these changes become the successful conclusion to an individual problem rather than the start of ongoing efforts to tackle the multiple contextual causes and effects of the abusive behaviour found across service structures. As has been suggested, using rights based frameworks to fix the problem may only further polarise and fragment support options. Polarisation may

limit the extent to which individuals, managers and organisations might be prepared to actively support the rights of all intellectually disabled people to a full sexual life (Brown et al., 2000). In addition, within rights-to-entitlement frameworks, changes to organisational and personal practices become a management rather than a support problem. This orientation can lead to a concentration of resources on the re-

organisation of different kinds of service provision while the underlying problems that relate to the “historical ways of doing things” (Van Houten & Jacob, 2005, p. 451) that infuse day-to-day support practice is left unchanged.

Rights, Support and Wider Social Processes

There have been suggestions that an emphasis on the rights of the autonomous individual only sharpens already existing distinctions between the more valued “public world of citizenship” (Bowden, 1997, p. 147) and the lesser-valued private world of interpersonal and domestic relationships. This distinction emphasises the social value accorded to “ideas of universalisability, impartiality, autonomy and rights” (Bowden, 1997, p. 151) rather than enhancing the social value of actions that enhance responsiveness to individual difference and maintenance of interpersonal relations of care and attachment. For Bowden full autonomy in the world of citizenship cannot be realised while notions of rights themselves are unable to fit comfortably into the world of interpersonal dependency. Although overtly

undervalued, these dependencies nurture the climates of care and trust that ultimately construct and maintain the autonomous ‘public’ structures of society. As she suggests any social order that has difficulty valuing and enhancing informal practices of interpersonal activity diminishes future successful possibilities of enhancing any “public practices of justice, equality, freedom, responsibility, nurture and community” (Bowden, 1997, p. 151).

While rights based agendas remain epistemologically entangled with the social value of disabled people within the public sphere, actions to change what is going on within ‘private sphere’ locations in which the practices of sexual support are based, are unable to be fully implemented (Shuttleworth, 2002). Thus how existing pressure on the relationships and practices of care might influence possibilities for intellectually disabled people remains largely outside of the consideration of rights based initiatives.

Questions such as: How can support practitioners provide the support necessary in this area while protecting personal values? Or how can support be practiced without the exploitation of unpaid or lowly paid, mainly female caregivers? are unanswerable. Within rights based approaches such answers will be generated from the same social divisions that have created the initial need for the questions. Meanwhile, ongoing undervaluing of interdependence and interpersonal care remains “detrimental to both those who are cared for and those who do most of the caring” (Bowden, 1997, p. 159).

Summary

Rights based frameworks also reveal a powerful oppressive figure against which it is necessary to exercise “the demand to be heard, to make choices and to exercise civil rights” (Armstrong, 2002, p. 336) as a form of redress. As Bowden (1997) suggests this framework ignores the wider context in which the concept of support itself is placed, thus it misses the complexity of the interpersonal interchanges that create the divisions that rights based initiatives seek to overcome.

Further Discussion

This chapter explored the three dominant conceptual frameworks related to how disability and thus support is currently conceptualised. As these frameworks primarily focus on expanding the role and function of the category ‘(intellectually) disabled people’, how the support position is conceptualised remains a less well thought through, default consideration despite the ‘support needed’ aspect of disability being intrinsic to and contingent on the disabled position. As this chapter reveals the support aspect of disability remains caught up in a series of representations that refract

through a core understanding of ‘disabled’ as a fixed position indicative of the presence of physical, behavioural, psychological, cognitive and sensory

inadequacy/impairment in relation to a corresponding adequacy/abled position. Each framework investigated reproduces key aspects of this socially favoured/socially unfavoured divide which constructs and reproduces the social difficulties all three theoretical understandings seek to transcend.

This investigation raised the question of how to proceed from this point. Remaining locked into any one of the theoretical frameworks outlined as the lens through which to view the support role is to also encounter the problem of upholding the binary inherent in these frameworks. As the extensive use the normalisation/SRV model in service systems demonstrates, not taking into account the effects of this binary limits possibilities for pro-active support change. This analysis suggests that a more

contextual view of disability and support is needed to address this issue.

The next chapter details how I begin engage with a new conceptual framework from which practice difficulties that affect workers and those they support in the sexuality area can be considered. I return to aspects of the literature review in order to start to reframe the support process as a series of inter-relationships that are imbedded within larger contextual points of reference. I unpack the difference between modern and post-modern ways of viewing and explore how a post-modern position might be able to re-site of notions of ‘disability’ and ‘support’ as a series of interlinked power dynamics that shape the actions of intellectually disabled people and those who support them.

Chapter 5