Citizenship Inclusion and Intellectual Disability

Biopolitics Post-Institutionalisation

Niklas Altermark

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781351614597
• Edition: 1
• Topic: Social Sciences
• Subtopic: Disabilities in Sociology
• Index: Social Sciences

What happens when a group traditionally defined as lacking the necessary capacities of citizenship is targeted by government programs that have made 'citizenship inclusion' their main goal? Combining theoretical perspectives of political philosophy, social theory, and disability studies, this book untangles the current state of Western intellectual disability politics following the replacement of state institutionalisation by independent and supported living, individual rights, and self-determination.

Taking its cue from Foucault's conception of 'biopolitics', denoting the government of the individuals and the totality of the population, its overarching argument is that the ambiguous positioning of people with intellectual disabilities with respect to the ideals of citizenship results in a regime of government that simultaneously includes and excludes people of this group. On the one hand, its members are projected to become ideal-citizens via the cultivation of citizenship capacities. On the other, the right to live independently and by their own choices is curtailed as soon as they are seen as failing with respect to the ideals of reason and rationality. Therefore, coercion, restraints, and paternalism, which were all supposed to end with deinstitutionalisation, are still ingrained in services targeting the group.

In equal parts a theoretical work, advancing debates of critical disability theory, social theory, and post-structural philosophy, as well as an empirical engagement with the history of intellectual disability politics and the ways in which present day politics target the group, this book will be of interest to all students and scholars of disability studies, disability politics, and political theory.

Part I
Introduction

1
Post-institutional

In September 2010, the local paper Sydsvenskan (sydsvenskan.se, 10–09–01) revealed that a person diagnosed with intellectual disability getting support in a group home in Malmö, Sweden, had lived with his arms tied behind his back for the last 25 years, more than 15 years after the approval of legislation that granted him the same freedoms and rights of personal integrity as any ‘normal’ adult person. It had been almost 20 years since deinstitutionalisation had been completed and succeeded by integrated living and disability rights; he should have been a citizen. Still, a sock had been used to tie him up; it was a measure ordinated by several doctors in clear violation of the law. It was meant to protect him; it was said that he would hurt himself otherwise, although no one had seen him do so apart from occasionally scratching his ears. To facilitate the arrangement, he only wore long-sleeve T-shirts that could be strapped behind his back and tied together with the sock. There was a schedule for the procedure. If you are tied in this way for 25 years, your muscles wither, coercion inscribes itself upon the materiality of your being. The productiveness of power, in a very manifest sense, came to shape his body. (svt.se – 10–09–01; sverigesradio.se 10–09–02)

The most convenient response to this episode surely is to see it as an anomaly, the result of a very grave yet local implementation failure and as something that occurs despite the policy goals of inclusion, citizenship, and personal integrity. Sweden, after all, is commonly seen as a role model as regards progressive disability rights and services (see Race, 2007:23–5). Such sentiments also flavoured the responses of public officials. The manager claimed that she had no knowledge of the incident, and the responsible municipal politicians declared that the man had not suffered any harm by the procedure (sverigesradio.se – 10–09–02). Everyone insisted that this would not happen again and that similar practices were not occurring in other group homes; it was a rotten apple in an otherwise appealing fruit basket. To a certain extent, this way of understanding mistreatment recurs in the scholarly literature on intellectual disability politics, where standard responses to shortcomings may go along the lines of ‘we have good policies but implementation lags behind’ or ‘if everybody just followed the policy template then none of these bad things would happen’. Such sentiments, however, cannot explain why the ideals of citizenship, self-determination, and independent living seem to fall short more or less everywhere they should be guiding disability politics (Mansell, 2010:11): they cannot explain the locked gates outside group homes which house people who have been granted freedom of movement, they cannot explain locked refrigerators owned by people granted the freedom to eat whatever they want, and they cannot explain the everyday practice of staffers deciding how many cups of coffee is appropriate to drink if you are diagnosed with intellectual disability. Indeed, they certainly cannot explain why it only took a month and a few days before a very similar case of a tied-up man diagnosed with intellectual disability was revealed in another part of Sweden (sydsvenskan.se – 10–10–06).

Rather than an anomaly, I argue that this example of decades-long perpetual violence is an expression of a certain mode of institutionalised politics which operates by producing included citizens whilst simultaneously upholding their exclusion: not anomalous, but symptomatic of how people with intellectual disabilities are today being governed. The coexistence of technologies which produce citizens and technologies that withhold their fundamental citizenship rights is a defining feature of the present management of the condition. The production of citizens shapes the individual to behave appropriately, to learn skills of citizenship that staff consider important, and to manage their own lives in accordance with ideals of how ‘normal’ people live. The undoing of citizenship consists of restricting individuals, by rules, coercion, and paternalism, because people of this group are simultaneously seen as deficient with respect to the capacities associated with citizenship. The rationalities of these two technologies of government are coexistent and recurring, in disability services and policy discourse, and their contours can be seen throughout the history of Western political philosophy. Although they do not make the headlines, the daily practices of deciding what disabled persons should eat, how they should spend their leisure time, whether they should be allowed to have sex, how many cups of coffee their stomachs can handle, and what specific blend of coercion, bribing, and threats should be put to work when they refuse to take their weekly shower, are, in essence, all expressions of the same mechanisms of concurrently doing and undoing inclusion and citizenship.

Thus, the problem that I set out to make sense of is what has happened after the introduction of citizenship politics for people with intellectual disabilities; what such politics is premised on, how the boundaries marking the sphere of inclusion are monitored and upheld, and how power is maintained and control exercised after inclusion. My response to this will consist of two related arguments that I will develop throughout the book.

First, as hinted at earlier, the new politics of participation, individual rights, and self-determination that emerged during the last decades of the 20th century did not mean that power was moved from public officials to persons with disabilities or that power somehow vanished to leave room for an unconstrained individual freely deciding how to live. Rather, the government of intellectual disability became something else: a way of governing that relies on both crafting citizens and continually monitoring and correcting their conduct, sometimes by brute force, in case an appropriate citizen fails to materialise.

Second, in order to resist this regime of government, we need to attend to intellectual disability, as well as the human condition more generally, as marked by precariousness; that is, we need to get rid of the idea that the defining characteristics of humanity are independence and autonomy fulfilled by capacities of reason and rationality. As will be clear throughout this book, the question of how intellectual disability is governed is interlinked with what we take intellectual disability to be. Against dominating medical and psychological understandings, I will argue that intellectual disability should be understood as an expression of human vulnerability, concerning how our bodies interact with the world and how these interactions are culturally and socially constituted to become knowledge, classification, and, thus, subjectivity. To attend to intellectual disability as an instance of vulnerability does not imply that this group is especially vulnerable but that we need to acknowledge how the persistent neglect of our shared vulnerabilities has been an underlying rationale in the constitution and government of this group. The last three chapters will mobilise this insight as a critical resource for rethinking disability, ethics, representation, and hence the division between ‘able’ and ‘disabled’ more generally.

Citizenship inclusion and post-institutionalisation

Now, I want to specify the research problem a little further and introduce some of my key concepts. In Europe and North America, the last three or four decades have witnessed fundamental changes to how people with intellectual disabilities are treated and targeted by social policy, changes that were very often tied to ambitions of deinstitutionalising disability care and that were dressed in the terminology of ‘participation’, ‘independence’, and ‘self-determination’ (see Bigby, 2005:118; Clement & Bigby, 2010:159). The overarching goal was to end ‘exclusion’, interpreted as the lack of integration, rights, and autonomy of people with this diagnosis. Central to this mode of politics is the concept of ‘citizenship’, which here denotes governmental efforts that seek to heighten the status of disenfranchised and stigmatised groups by granting them the equal rights and status as full members of political communities. Thus, ‘citizenship’ concerns what the demos of democracy is: who has rights worthy of protection and whose living conditions compose the intrinsic aims of governing; who is ‘normal’ enough, competent enough, and human enough, to be a citizen? Following from this, the re-conceptualisation of people with intellectual disabilities as worthy of social and political belonging will be called a politics of citizenship inclusion, the principle object of study of this book.

As I will discuss further throughout, the politics of citizenship inclusion is designed to protect the liberty of the individual against a state apparatus which has, throughout history, treated members of this group as lesser beings who are unable to make choices about their own lives. Although there are, of course, differences between national contexts in this respect (we shall return to the extent of these later in this chapter as well as in Chapters 5), the concurrent featuring of inclusion by means of citizenship and the construction of intellectual disability as a biologically anchored diagnosis of lacking intellectual capacities character-ises present disability policies in liberal democracies. Hence, we see processes of deinstitutionalisation, socially integrated living arrangements, legal frameworks granting individual rights, and commitments to ‘independent living’ and ‘self-determination’, across national borders and in the work of influential international organisations such as the UN and the WHO. At the same time, the results are often considerably less rosy than the stated ambitions: people with intellectual disabilities are far from the self-determined citizens, participating and fully included, that the new policies postulate (see Bigby, 2005:117; Johnson & Traustadóttir, 2005:14; Tøssebro, 2005:197). First, in the sense that institutionalisation prevails in some places and that many countries fail to live by their own commitments to citizenship rights. But more importantly, I believe, in the sense that the new services and legislations of integration and citizenship continue to restrain people with this diagnosis. In this way, contemporary intellectual disability politics is both embedded in promises of liberation and disappointments of bleak outcomes. This is the predicament of the era that I will call post-institutionalisation, where oppression has supposedly given way to emancipation and freedom but where power still lingers and there is a widespread perception that emancipation has failed. The allusion to ‘post-colonialism’ is, of course, intentional: drawing on Spivak’s (1995 in Kapoor, 2004:639) analysis of ‘post-colonialism’ as the failure of decolonisation, we may ask what the failure of deinstitutionalisation is; what kind of political situation are we facing and how can it be made sense of?

To answer this, I believe that it is absolutely necessary to reconsider two central issues concerning intellectual disability politics. The first one is what this condition is. As stated, the dominant understanding is that we are dealing with a biologically anchored diagnosis of deficient intelligence. On the contrary, and for reasons I will develop soon enough, I believe that post-institutional analysis requires that we see ‘intellectual disability’ as a social phenomenon, constituted by certain discourses and knowledge techniques and ultimately existing for government purposes. The second thing to reconsider is how we see the politics of citizenship inclusion as such. Policies stating ‘inclusion’ as their main ambition are often depicted in contrast to a history of oppression – of confinement, paternalism, and dehumanisation – where the new services and legislations are presented as a relief, emancipatory in nature, and as the outcome of the admirable political struggles of the disability movement. Yet underlying this picture is often a crude and problematic understanding of ‘power’ and ‘citizenship’ as determinate opposites; citizens have power over their own lives, and governments restrain citizenship in their exercise of power. In order to understand present intellectual disability politics, I contend that we instead need to understand ‘citizenship inclusion’ as a new way of governing that operates by constituting intellectually disabled citizen-subjects (Cruikshank, 1999). Citizenship inclusion did not replace state power but is an instance of it.

Reconsidering these two aspects – of what intellectual disability is and how the relationship between government and citizenship should be made sense of – represents a way of understanding how this particular segment of the population is ruled. This is what Michel Foucault (1990:part 5) called biopolitics – the central theoretical term that I will start my examination from. From this theoretical perspective, it is necessary to analyse the formation of intellectual disability and the politics targeting this group together. Hence, central to what will follow is a theoretical link: between how intellectual disability is constituted and how the governmental efforts targeting the condition are designed. Consider here Rose’s (2006:133) argument that projects of citizenship during the past 200 years produced citizens who came to understand their status as full members of society in biological terms. As we understand the capacities necessary for citizenship to be linked to the materiality of the body – and in recent times to the grey and white matter inside our skulls – the inclusion of non-whites and females implied rethinking the biological basis of their cognition; citizenship status for these groups was premised on dislodging ‘sex’ and ‘skin colour’ from notions of cognitive capacities. The reason why the label of ‘intellectual disability’ cannot be dislodged from lacking capacities in similar ways is that the diagnosis is defined by ‘deficient intelligence’. Indeed, as I will elaborate on in Chapter 2, the reason why the characteristic of ‘deficient intelligence’ was consolidated into a specific category and label was the need to segment individuals who were thought of as lacking the capacities necessary for citizenship. This way of constituting intellectual disability as a deficiency residing in the brains of diagnosed individuals, is – and has always been – an integral aspect of how members of the group are being governed.

In other words, the same notion of citizenship that provided the yardstick that classified inferior intelligence as a specific category of human beings is today figured as the vehicle of inclusion for this group. What intellectually disabled people share is the fact that their brains and capacities are perceived as different with respect to what is considered ‘normal’. Simultaneously, the goal of inclusion is that they should be able to ‘live as others’, that is, as ‘normal’ people. Indeed, to be eligible for special services that should produce independence, one has to be considered as someone in need of help. As we shall see, post-institutionalisation is frequently haunted by such contradictions and conflicts between designations of otherness and dreams of inclusion. These emerge as the border between exclusion and inclusion is renegotiated, that is, when a group which has served as the outside mirror of humanist reason, autonomy, and independence is to be included by what seems to be precisely these ideals.

Ultimately, this reveals a link to how the defining characteristics of humanity are understood more generally. Capabilities such as ‘reason’, ‘autonomy’, and ‘independence’, are central to a conception of subjectivity that emerged with Enlightenment philosophy, a conception that has since dominated our thinking about what it means to be human. The classificatory category that we understand today as ‘intellectual disability’ consists in the failure to meet these ideals; intellectual disability is their ‘otherness’. Thus, we may reformulate the overarching problem of this book in more theoretical terms: what happens after the Others of citizenship are to be embraced by the same ideals that produced their exclusion?

The need for post-institutional analysis

As is clear from the foregoing, this book largely engages with a theoretical problem, where my aim has been to contribute to discussions revolving around inclusion and exclusion, normalcy and deviancy, and citizenship and government, issues which are all located at the heart of recent debates in political theory. The fact that these are theoretical issues, however, does not mean that they will be removed from the actual lives of people with and without intellectual disability in my analysis. In this book, we shall for example encounter people who have been held back in their everyday lives in ways that would be deemed unacceptable had they belonged to any other group; we will meet support workers struggling to implement policy – each and every working day from 7.00 to 16.30 and from 12.00 to 21.00 (or from 21.00 to 07.00 if working the night shift) – and we will discuss in detail how present classificatory criteria are constructed and affects the lives of labelled individuals. Thus, although this is a work in the political theory of disability, the arguments are constantly putting theory into dialogue with the empirical matters of disability politics. ‘Theory’ here, is considered to be a tool used to reinterpret the world, to make us question our presumptions concerning how it functions, which, in turn, might pave the way for actually changing it.

Bearing this in mind, I want to add a few things about the contributions of this book. ‘Intellectual disability’ does not entail falling short of just any ideal but of the absolutely central ideal of humanity as characterised by reason and rationality. As I will elaborate on in the second and third chapters, our cognitive ability is often seen as a quintessential characteristic of humanity, fundamental to how human beings are differentiated from other living things and repeatedly stressed in Western philosophy as our defining characteristic. Paying attention to a group that is perceived as failing with respect to this ideal provides the opportunity to expose the limits of a politics that is fuelled by a will to include, inherent to modernity, humanism, and liberal democracy. As a contribution to social and political theory, thus, I argue that intellectual disability is a crucial case; the study of ‘intellectual disability’ provides a privileged position from which the inner workings of a model of emancipation founded on ideas of self-determination, self-sufficiency, and autonomy can be critically assessed (Clifford Simplican, 2015:3). A vital aspect of my analysis will be that intellectual disability contains the norm that it is separated from. Therefore, examining how we construct and govern ‘deviancy’ also entails that we analyse the unacknowledged norm of appropriate cognitive functioning that disabled people are compared to (see Goodley, 2014:26). This means that this is not a book about ‘intellectual disability’ but about the dividing line between ‘normalcy’ and ‘deviancy’ – a division in relation to which we are all situated. In this sense, the politics of intellectual disability is also ‘the politics of all of us’.

As a contribution to disability studies, on the other hand, my analysis provides the first book-length examination of intellectual disability from the theoretical perspective of biopolitics. Carlson (2010:12) argues that attempts by critical disability scholars to destabilise notions of ‘impairment’ and ‘disability’ have tended to overlook cognitive impairments. In response to this, I would argue that ‘intellectual disability’ is pivotal to understanding the mechanisms of a disabling society, precisely because this particular condition is taken to be located at the heart of subjectivity: in the brain of the individual. ‘Intellectual disability’ is not just another category whose inclusion deserves recognition; it is, arguably, the group that exposes how the ideals of...