Setting the scene
Having worked for more than 27 years in Irish intellectual disability services, nursing and disability education, it is my assertion that, despite the onset of new philosophies of service, not too much has actually changed for many people with intellectual disabilities in Ireland at a fundamental level, and that apparently improved outcomes may actually be changes in hue, rather than changes in substance. In the light of this assertion, I propose that there is a need to revisit people with ‘intellectual disability’ through a different lens than the disability one through which they have been viewed for so many years. Furthermore, I propose that such a realignment of the social lens may result in a need to reconsider the roles of frontline carers, and others, who are involved in current service provision.
Many of us involved in professional frontline care (nurses and social care professionals) have been formed to work within accepted societal and service models. Both training and experiential components of our preparation have played a role in this formation. The concept of formation is an important one, as the training component of caring programmes is akin to other vocational training involving the imbuement of societal values and beliefs, in this case those pertaining to intellectual disability service provision (Lum 2003). Anecdotal evidence from many student carers (nurses and social care professionals) suggests that these values and beliefs are reinforced during service-based placements where they quickly learn that asking too many questions and having a critiquing approach to practice can often lead to negative outcomes for them. So, they stay quiet, in the same way that people with intellectual disabilities often do (Gates 2005). Indeed, not only do they ‘keep their heads down’, but they learn how to navigate the service system in a blinkered fashion, being able to push rights violations and deprivations to the periphery of their vision. Such social formation encourages the development of a potentially dissonant workforce, deprived of initiative, motivation and power; able to accept a different set of realities for people with intellectual disabilities than apply in their own lives. The result of such formation is the creation of a culture of fear and silence in which the status quo is maintained and challenges from within the caring disciplines are unlikely (Mooney and Nolan 2006; Hooks 1994; Freire 1996, 1998). It is such a culture which allows unacceptable practices to develop and persist.
Changing the perspective
Sometimes it is good to step back, take a few steps to the side, and look at things from an alternative angle to what has shaped one’s view of the world. When I did this some years ago, I realised that validity of my role was challenged when alternative perspectives on intellectual disability were considered. Indeed, what I realised was that the role I was playing may have actually been the antithesis of what I had believed it to be. At the time, I was reading the pedagogical work of Paolo Freire, as well as Jon Sobrino’s writings (2008) on liberation theology. They offered a viewpoint which, when applied to people with intellectual disability, portrayed them as oppressed people who share many of the experiences and stereotypes that had hitherto been applied to the oppressed poor. For Freire, these people had been dehumanised through oppression and were caught in the duality of being at once oppressed and, at the same time, the internalised image of their oppressor. To the oppressor they were ‘good for nothing, know nothing and are incapable of learning anything…sick, lazy, and unproductive…’ (Freire 1996: 45). They were deviants, ‘rejects of life’ (ibid. 27); ‘beings for others’ (ibid. 55) whose lives were exploited for the betterment of those who oppress, and who were ‘cheated in the sale of their labor’ (ibid. 32). Deprived of their voice and of their humanity, they ‘extend their trembling hands’ to receive the ‘false charity’ of their oppressors (ibid. 27). Sobrino (2008) posits that their life experience is characterised by injustice, cruelty and death. How did this offer any useful perspective on people with intellectual disabilities?
The oppression model
It struck me that, from a Freire-Sobrino perspective, the societal response to people with intellectual disabilities in Ireland was strikingly oppressive, such as to constitute a systematised model of oppression. Consideration of this oppression model offers a view that brings into focus the role of intellectual disability service, and the workforce therein, in subjugating the development of people with intellectual disabilities.
Within this model, people with intellectual disabilities have, for centuries, been cast into historical deviancy roles, and marginalised through processes of segregation and congregation (Sheerin 1998, 1999). This, allied to fundamentalist attitudes, led to them becoming objects of dread and of fear, ‘immoral, diseased, irrational, mindless’ (Rafter 1992:25). Such views and responses to persons with intellectual disabilities served to foster dehumanisation, leading to the point where the central focus of service provision became one of control (Rafter 1992) and the means of control—means not always acceptable in mainstream society—became sanitised within the context of the professionalised practice (see, for example, Wolfensberger (1973) on aversive punishments). These things happened because, as Judith Klein (Director of the Open Society Mental Health Initiative) said of atrocities committed against children with intellectual disabilities in Bulgarian state homes, ‘these people don’t count as people’ (Klein quoted by Brunwasser 2010: 1).
The origins of such service provision in Ireland have been described elsewhere (Robins 1992, 1986; Finnane 1981) and what is described is the emergence of formalised ‘care/control’ structures around groups of people who had become increasingly marginalised from mainstream society. It was within this context that people with intellectual disabilities repeatedly came to accept that their reality is different from that of other human beings. They became objects of charity (UN 2010) ‘extending their hands’ (Freire 1996: 27) to receive the generosity of others. It is arguable that this marginalisation not only physically separated people with intellectual disability from mainstream society; it also facilitated the movement of this group out of societal consciousness so that they essentially became ‘forgotten’ by society. Thus, away from the ideals of the Republic, the civic virtues embodied in civic republicanism, ‘virtues of participation, democracy, liberty, equality and social solidarity’ (Taskforce on Active Citizenship 2007: 3), did not apply, and charity, rather than solidarity was afforded those in institutions. Freire (1996) proposes that this form of charity is, in fact, false generosity in its essence and antonymic to solidarity. He argues that such false generosity, deriving from the oppressors, actually benefits the conscience of the donor rather than effecting any real form of solidarity, and is discordant with such solidarity.
Within the oppression model the involvement of formal carers similarly has its basis in a form of generosity that is not centred on the virtues of civic society. If it were, marginalisation of people with intellectual disabilities and arbitrary denial of their human rights would no longer be an issue; the carers were the people who did what most people would not consider doing and, in doing so, they appeased the unconscious guilt of society. Instead, they may be unwittingly working to maintain the margin (Fig. 1). The emergence of service-based rights commissions and of national groups is evidence of their continuation, albeit in more attractive guises. No-one doubts the intentionality of goodwill that underpins the work of carers (including this writer) but, as long as that goodwill is directed solely towards the provision of care/service for disabled individuals, it will maintain those individuals in their states of disability. Thus, the status quo is protected, with generations of carers and service personnel metaphorically reaping the good things of life on the backs of those on whose disablement their comforts depend (Freire 1996; Sobrino 2008). Moreover, the operation of service-based rights commissions and advocacy groups may be viewed as further examples of goodwill intentionality which may be fundamentally compromised if considered from the context of an oppression model of service.
Professions within intellectual disability services have justified their existence on the basis that they provide a specialist service to a specific group of people (Northway et al. 2006). The image that emerges of service, and of its place in society, is one in which the failure of mainstream society to address the individualised needs of people with intellectual disabilities leads to the potentially determined failure of these people to achieve mainstream societal norms in various outcomes. As people with intellectual disabilities form a marginalised and dehumanised group, the solution to this problem is not located in mainstream society but, rather, is in the development of specialists who can address their needs where they are, thus, perpetuating the reality of their separation from human society.
Poverty grounded in oppression
Wolfensberger (1995, 2000) has written extensively regarding the wounds of people with intellectual disabilities. His writings concur with the position proposed above, as he suggests that service providers collude, albeit unwittingly, in the wounding of service recipients. It is undeniable that offering such a perspective fundamentally challenges the base of service providers and caring professionals who may have dedicated many years to the service of people with intellectual disability. Their despair will not be allayed by Freire’s suggestion that by dehumanising others, even unwittingly, the oppressors themselves became dehumanised.
It may be further suggested that the current social response is oppressive in its nature and, through its inherent control, segregation and tendency to marginalise people both physically and socially, constitutes a form of violence. The result of such violence is disempowerment and dehumanisation. The responses of the oppressed may be twofold. The first, withdrawal, is discussed by former residents on the Scottish NHS video Just ordinary people (Gates 2005), in which they noted that in order to avoid trouble in the institution, they stayed quiet – ‘you keep your mouth shut to have a peaceful life’. The second response may be to fight back against the perceived injustice. Such a response may, however, be considered by oppressors to constitute unprovoked and meaningless violence (Freire 1996). In the context of intellectual disability, the still-present pathological perspective may interpret such violence towards self or others as challenging behaviour warranting interpretation and intervention, whether behavioural or pharmacological. The successful outcome of such intervention may be interpreted as a return to quiescence with re-conformity to the requirements of the oppressive society.
The expectations of society regarding people with intellectual disability are therefore mediated through the health system and its body of frontline carers and other professionals, who are prepared for their task through a process of education, training and socialisation.
Implications for service and practice
If we consider the validity of the oppression model as a possible explanation for the continued marginalisation of people with intellectual disability, the potential implications for service and practice are significant. Despite the well-meaning intent of service and practitioners, it becomes apparent that both may be engaged in an historically-grounded model of societal rejection and oppression that is both disabling and dehumanising. Such a revelation should not be met with despair, but rather with a resolve to realise the well-intentioned action that led people into such service provision. The answer to these problems cannot be addressed overnight and calls for immediate cessation of specialist service provision would be inappropriate. The answer is, alternatively, the engagement of people with intellectual disabilities and practitioners in human rights action that challenges the situation by maintaining specialist action for as long as it is needed, whilst concurrently campaigning for a re-evaluation of the social and political model that has supported the continuance of this situation (Fig. 2).
Furthermore, service providers and care providers need to conceive of a time and a set of conditions where they may no longer be required; a time when the mainstream has been widened to include those people who have been made deviant by society. This will necessitate much work on the part of specialist intellectual disability services and practitioners, as it will require them, together with the people they support, to call the mainstream to account for its failure to include these people. They will also be required to ensure that proper structures are put in place in mainstream service, as well as in the preparation of mainstream professionals, to support the real inclusion of people with intellectual disability in society.
Many people with intellectual disabilities have seen changes in the character of service provision over the past few decades. This has included a move from congregated to more individualised settings; increased ventures into mainstream society; for some, a more positive image; and apparently greater recognition of rights. All of this has taken place whilst the overall approach to intellectual disability has remained the same. It is this writer’s perspective that much of this is window-dressing. The evidence to support such a perspective is growing, as the recessionary forces have hit hard and funding cuts have disproportionately targeted those who do not fit in the mainstream. With anecdotes emerging of frontline services being reduced, it appears that human rights for people with intellectual disabilities are only respected when society can afford them. This article challenges those of us who are working within services for people with intellectual disabilities to examine the possibility that their reality is very different from ours…and to ask ‘why?’