Intellectual Disability and Social Policies of Inclusion: Invading Consciousness without Permeability [1st ed.] 9789811370557, 9789811370564

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Intellectual Disability and Social Policies of Inclusion Invading Consciousness without Permeability David P. Treanor

Intellectual Disability and Social Policies of Inclusion “This book makes an important contribution to contemporary disability studies, providing one of the few comprehensive philosophical treatments of the subject. Drawing on a wide range of sources, but with a strong emphasis on a personalist approach, Treanor develops a clear and convincing critique of current disability policy and practice.” —Jeff Malpas, Distinguished Professor, University of Tasmania “David Treanor builds a compelling case that neoliberalism, with its emphasis on success, independence and the marketplace works against inclusion. He calls for the praxis of nationally coordinated disability support systems to embrace personalist principles that have at their core a relational focus that moves people in from the margin. How to go about this challenge brings the book to conclusion. It is an enlightening read.” —Patricia O’Brien, Director, Centre for Disability Studies, and Professor of Disability Studies, University of Sydney School of Medicine, Faculty of Medicine and Health “Treanor’s unwavering commitment to the full humanity of all persons flows through every page of this important book. It is precisely this commitment which enables him to perceive the ongoing structural, systemic, and attitudinal barriers to dignity and belonging faced by persons with an intellectual disability. This is a ‘must-read’ for anyone working in disability services, engaged with government policy, or indeed, for anyone who shares or would like to share their life with someone who has an intellectual disability.” —Dr Lucy Tatman, University of Tasmania

David P. Treanor

Intellectual Disability and Social Policies of Inclusion Invading Consciousness without Permeability

David P. Treanor School of Humanities, Philosophy & Gender Studies University of Tasmania Hobart, NSW, Australia

ISBN 978-981-13-7055-7    ISBN 978-981-13-7056-4 (eBook) https://doi.org/10.1007/978-981-13-7056-4 © The Editor(s) (if applicable) and The Author(s) 2020 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Cover illustration: agefotostock / Alamy Stock Photo This Palgrave Macmillan imprint is published by the registered company Springer Nature Singapore Pte Ltd. The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721, Singapore

But since life is a fragile and unstable thing, we have no choice but to be ever on the search for people whom we may love, and by whom may be loved in turn, for if charity and goodwill are removed from life, all the joy is gone out of it. Cicero, De Amicita 102

Preface

The purpose of this book is to explore, after 40 to 50 years of deliberate western government funding of programmes of social inclusion for persons living with an intellectual disability, why such persons are still separated from the social, relational and economic fabric of our neoliberal societies. The approach reflects my experiences, studies and perceptions of the present position for persons living with an intellectual disability after years of what might be termed “revolutionary” changes in both advancing the rights of persons in legislation and designing “individualized or personalized” services that are provided across western nations. The rhetoric in each of these forms of government guarantees a person’s right to education, housing, social security benefit and health care. Indeed in the United Kingdom, inclusion is one of the four critical policies for persons living with a disability (Department of Health, 2001). Yet these are not sufficient to secure independent living, employment, mainstreaming, personal well-being and flourishing for many persons living with an intellectual disability. Why is this so? In summary, I believe that the nature of the reform process has been driven unnecessarily by the economic neoliberal paradigm, and this is not in the best interests of persons living with an intellectual disability. The fundamental proposition that lies at the heart of this book is that a person living with an intellectual disability is first and foremost a person qua person—that is, regardless of ability, age, gender, culture or ethnic vii

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background, each human being is a person since each person shares a common humanity. That is, a vulnerability from our finite status and our desire to live interdependent and flourishing lives. If the classification “intellectual disability” is used, it will, more often than not, limit his/her personhood by attributing negative and limiting characteristics to the person. This is often compounded by the cultural views that are held towards persons living with an intellectual disability. The human condition is never static. A person will continually grow, develop and deteriorate through the years as we experience a range of social and educational experiences and opportunities that are normative to the culture in which we live. Further, legislation in many western nations exists that entitles all persons to be accepted and valued for our being and provided with opportunities to realize our full potential as a person qua person. This incorporates citizenship rights and responsibilities, with opportunities to genuinely participate in our local communities. However, as I will demonstrate, these opportunities are not available to all persons, since those living with an intellectual disability have, and continue to be subjugated by, negative attitudes and low expectations from peers, often family members as well and from organizations and individuals paid to provide support services. A good example of the message I am arguing can be found in an initiative of one western nation, Australia. In 2019, the Federal government established a Royal Commission to explore violence and abuse into the lives of people with disabilities. The Commission examined education in one state in November 2019 and yet a contradiction occurred—not a single person with a disability was invited to give evidence to the Commission (Campanella & Hermant, 2019). Lived experiences and first-hand testimonies are vital to form valid findings, and while this is the first of three hearings on education, the social disability principle of “nothing about us, without us” (Charlton, 1988) appears to be ignored and I suggest this reveals Australia’s unconscious cultural attitudes—that persons living with the experience of intellectual disability are unable to communicate to others and their views are less important than persons living without the experience of an intellectual disability. There are also examples of such practices in other western nations.

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This book draws upon a range of critical theories to demonstrate how this negative paradigm sustains itself. There are a number of other theoretical explanations that seek to demonstrate how a person and institutions act in society. One explanation that occupies this book is the philosophy of personalism (Browne, 1908; Gibson, 1932; Knudsen, 1927; Macmurray, 1961, 1969; Maritain, 1947, 1985; Mounier, 1952), which is compatible with the object-relations school of psychology and psychotherapy. In addition, the work of Julia Kristeva (2006, 2010, 2011 with Jean Vanier, 2013) also serves to complement this explanation. Thus, the dominant theory used is that of the philosophy of personalism that emphasizes the “significance, uniqueness and inviolability of the person, as well as the person’s essentially relational or social dimension” (Williams & Olof Bengtsson, 2018). Personalist philosophy emanated from the priority that was being attributed to a set of emerging values, ideas and structures in western societies that a range of philosophers believed were having an adverse effect on human persons and their society. The value of personalism is that it questions the obscured personhood of persons living with an intellectual disability that is inherent in the policies of social inclusion, and it raises questions that challenge these comfortable assumptions. My first approach to writing this manuscript included surveying the policies of western nations and then assessing their impact upon the lives of persons living with an intellectual disability. A pattern emerged. The evidence I collected from numerous scholars across western nations states, in relation to persons living with an intellectual disability, demonstrated on the whole that such persons are typically living outside the life rhythms that persons living without an intellectual disability experience. It seemed to me, it would be possible to detail, country by country, the experiences of persons living with an intellectual disability. This would be valuable as an anthology and would confirm the research evidence: social policies have yet to significantly address how persons living with an intellectual disability are incorporated in and across social, economic and political spheres of society. However, I believe this approach would overlook the underlying issues of social policies of inclusion. The second approach would be to argue that social policies of inclusion fail persons living with an intellectual disability, since fundamentally

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persons are valued qua persons. If persons were truly valued as persons, social policies of inclusion would be redundant since a person’s place in the social, economic and political spheres would be embedded in the valued roles s/he occupies in society. In this argument the central need of each person is to feel s/he belongs to another person since human encounter, place and space are of paramount importance in our lives as human beings or persons in the wider community. That is, for any person it matters where we live, and with whom, who are our friends, how we spend our time, how we express ourselves and our conception of what it means to live a good or flourishing life. Our family of origin and the culture in which we grew up influence and form our thoughts and beliefs on these matters. This is the approach I have taken to understanding why social policies of inclusion are unsuccessful. I propose we need to think differently about the nature of intellectual disability, the role culture plays in our lives and the impact the philosophical values inherent in neoliberalism have on implementing social policies of inclusion. The Universal Declaration of Human Rights was adopted in 1948, and the subsequent human rights-based legislation that developed in western nations all asserts that persons (the term “persons” includes all human beings) have rights by virtue of their shared humanity, although, as many humans know, in order to have these rights one needs to be more than a human being (Arendt, 1998). Arendt’s legacy included successfully applying the phenomenological method to political philosophy, and she demonstrated this in the treatise The Origins of Totalitarianism (1968). Here she provided a comprehensive and critical narrative of the history of anti-Semitism in Europe and the social and economic conditions that enabled the development of fascism in Germany and communism in Russia. Many other cultural groups have also experienced exclusion and discrimination on the basis of their being, and I argue the prevailing negative cultural attitudes towards persons living with an intellectual disability are a primary factor in compromising the ability of persons to secure their rights in western societies. Further, the inability of political and institutional elites to move beyond traditional paradigms prohibits persons living with an intellectual disability from being fully incorporated as persons and as members of the political community. In most western nations the rhetoric indicates that persons living with an intellectual

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disability are regarded as citizens, and this offers legal protection, access to education, health care services, voting rights and so forth. However this “right to have rights” (Arendt, 1968, p. 296) is not secured, since persons are not offered appropriate education, support mechanisms and forums that secure their access to meaningful membership in any of the western political communities. Moreover, Arendt (1998), like Macmurray (1969), prioritizes action over thinking and identifies three critical human activities: labour, work and action. She argues these activities are more constitutive of personhood than a person’s rationality. There are other groups who are in a similar disempowered position to persons living with an intellectual disability, for instance, refugees, undocumented immigrants or sans papiers. However, if such persons live in a western nation, over time they can become aware of their personal rights and can engage in public conversations. What distinguishes persons living with an intellectual disability is society’s inability to (a) make persons aware of their rights, (b) provide persons with access to their full range of citizen rights and, (c) most importantly, mitigate the unintended and adverse consequences that flow from neoliberal philosophical values that dominate the disability public policy. Thus, holding a right only offers a framework and in itself will not offer persons meaningful community membership or a place to belong in their community. How then can persons who are on the margins of, or outside, a right’s community become members? How can individuals accompany persons living with an intellectual disability as a friend, in more generic social and family roles, in and through normative life cycles including active citizenship roles? I propose that action is required to change current circumstances. This includes individual persons making some personal commitment to developing relationships and friendships with persons with varying abilities. It means taking risks and challenging any personal negative attitudes of persons living without the experience of an intellectual disability we may encounter. Indeed, as society has become more inclusive of different genders, creeds, sexual orientations and ethnicities, most citizens have demonstrated this capacity to extend their personal and/or cultural belief systems and form relationships with persons with a different set of characteristics. It is also about communal cooperation and

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establishing meaningful connections with neighbours and others. Ultimately, I propose that to move forward, we need to rethink our notion of intellectual disability, our cultural understanding of intellectual disability, and emphasize values of interdependency and community over independence and autonomy. It will still remain a challenge. Change, creative strategies and progress will only occur through errors from the committed, tireless support of many persons. There will never be one simple path. Hobart, NSW, Australia

David P. Treanor

References Arendt, H. (1968). The origins of totalitarianism. San Diego: Harvest. Arendt, H. (1998). The human condition. Harmondsworth: Penguin. Browne, B. P. (1908). Personalism. Boston: Houghton Mifflin Company. Campanella, N., & Hermant, N. (2019). Rushed disability royal commission yet to hear from a victim or person with a disability. Retrieved from https:// www.abc.net.au/news/2019-11-09/disability-royal-commission-started-tooearly/11688270. Charlton, J. (1998). Nothing about us, without us: Disability, oppression and empowerment. Berkeley, CA: University of California Press. Department of Health. (2001). Valuing people: A new strategy for learning disability in the 21st century. London: HMSO. Gibson, E. (1932). L’esprit de la philosophies medieval. Paris: Librairie philosophise J. Grin. Knudson, A. (1927). The philosophy of personalism. New York: The Abington Press. Kristeva, J. (2006). At the limits of living: To Joseph Grigely. Journal of Visual Culture, 5, 219–225. https://journals.sagepub.com/doi/10.1177/ 1470412906066910. Kristeva, J. (2013). A tragedy and a dream: Disability revisited. Irish Theological Quarterly, 78(3), 219–230. https://journals.sagepub.com/doi/10.1177/ 0021140013484427. Kristeva, J., & Herman, J. (2010). Liberty, fraternity, and … vulnerability. Women’s Studies Quarterly, 38, 251–268.

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Kristeva, J. & Vanier, J. (2011). Leur regard percent nos ombres (Their eyes pierced our shadows). Paris: Libraire Artgeme Fajardo. Macmurray, J. (1969). The self as agent. London: Faber & Faber. Macmurray, J. (1961). Persons in relation. London: Faber & Faber. Maritain, J. (1947, 1985). The person and the common good (J. Fitzgerald, Trans.). Notre Dame, IN: University of Notre Dame Press. Mounier, E. (1952). Personalism (P.  Mairead, Trans.). Notre Dame, IN: University of Notre Dame Press. Williams, T. D., & Bengtsson, J. O. (2018). Personalism. In E. N. Azlta (Ed.), The Stanford encyclopedia of philosophy (Spring 2018 Edition). Retrieved from https://plato.stanford.edu/entries/personalism/.

Acknowledgements

The inspiration for this manuscript emanates from my friendships with persons living with an intellectual disability and from trying to make sense of why my friends are not readily accepted by other persons living without the experience of an intellectual disability and their local communities. When I have questioned such persons or community organizations, the general response seems to be that “some community organization” or “government agency” is responsible for creating friendships and bringing persons into the “community”. Amado (1993), rightly in my view, argues that community is an experience and not a location alas, I think this notion is becoming increasingly alien to government, support organizations, citizens and personnel employed in the disability services in western nations. It is as if once a person living with an intellectual disability secures government funding, then all other problems, such as social inclusion, will dissipate. As I demonstrate in this book, this does not occur. This is not to state that all or the majority of persons living with an intellectual disability are being exploited or abused rather. Nonetheless, through my experience of sharing my life with many friends, I notice how such persons are not well received in the community; examples

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include the negative verbal and non-verbal reactions that are offered to persons, the level of interpersonal distance in personal engagements and the artificial content of social engagements. Some persons I know were employed through supported workplaces, and notwithstanding the difficulties that come with this form of employment, persons, for the most part, received positive self-esteem and a sense of personal value for the roles they held. Unfortunately, in Australia this form of activity—supported employment—is becoming less of a phenomenon. Most persons I know are not in paid employment, and this contributes to their days being filled with leisure activities that often fail to extend their cognitive skills or include any form of learning. My hope is a reader will assess their own beliefs on intellectual disability and persons living with the experience of intellectual disability against prevailing cultural attitudes. My thanks to all who have read earlier versions of this book, discussed some of the ideas in it, made comments or suggestions or diligently listened to me while I was discussing the topic! I remain indebted to the many people who offered me advice and support throughout writing this book. However, I take full responsibility for the content. I would like to acknowledge an academic debt to particularly two persons: first, Retired Professor Ian Thompson. We have participated in many dialogues over several years; many have centred on the philosophy of personalism, and I have greatly benefited from these conversations. Ian’s confidence in me, his own lifestyle and commitment to the “activities of caring” continue to inspire and sustain me. In addition, through Ian’s understanding of ancient Greek philosophy and Aristotle, he mentored and formed me when I was undertaking my PhD dissertation, and a minor part of that work is presented here. I would also like to acknowledge and thank Jean Vanier, the founder of the L’Arche movement and for his belief in the inalienable dignity of each human person and for his life commitment to sharing his life with persons living with an intellectual disability. Members of L’Arche communities have been an integral part of my life, and I have discovered the meaning and importance of friendships through sharing lives together.

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I owe particular thanks to my daughter, Stella Treanor, for reading the final version and for her suggestions and insights. Most importantly, thanks to Cindy Treanor for all we have discovered together through our continued conversations about friendships, intellectual disability and the politics of social inclusion—sine qua non.

References Amado, A. (1993). Friendships and community connections between people with and without developmental disabilities. Baltimore: Paul H Brooks Publishing.

Contents

1 Overview  1 2 The Integrity of Persons 19 3 Social Inclusion: Invading Consciousness 61 4 Social Policies of Inclusion and Neoliberalism 93 5 Social Inclusion: Culture and Disability129 6 Belonging in Societies151 7 Alternative Approach to Implementing Social Policies of Inclusion173 8 Conclusion195 References201 Index229 xix

1 Overview

1.1 Introduction As a discipline, philosophy pursues reason and logic with the purpose of examining reality, that is, real life and fundamental questions including the notion of ‘persons’, ‘disability’ and if persons living with an intellectual disability can be considered as human ‘persons’. Indeed, more recently, the concept of how to treat persons who live with an intellectual disability has been scrutinized in western nations (e.g., Kristeva, 2010; Clapton, 2009; Carlson, 2010; Kittay & Carlson, 2009; Krall McCray, 2017). The latter offers insightful reflections on the concepts of independence and community and how this impacts the lives of persons living with an intellectual disability. The scholars writing on these topics are generally persons living without an intellectual disability, which may be seen as an advantage, as they are able to present an objective view. Conversely, their views may be assessed as ignorant, since they may fail to account for the actual lived experiences of persons living with an intellectual disability. There is a middle ground: academic rigour can assess historical patterns of behaviour and warn of potential pitfalls, with lived

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experiences offering the most meaningful insights into personal lives. This book where possible uses both sources of research. There are many persons with a physical disability (e.g., Oliver, 1990) or psychiatric/psych-social disability (e.g., Moeller, 2016), who can offer insights from the perspective of cultural barriers qua culture and qua barriers that impact upon personal lives. However, the insights of culture and barriers of persons living with an intellectual disability are typically articulated by family members, for example, De Vinck (1990), friends; Nouwen (1997), academics; Reinders (2008), held in narrative forms. Disability is not monolithic and indeed “even [in] the same diagnosis, two people’s experience are unique” (Moeller, 2016, p. 230) and a personalist approach will always focus on each person’s individual experience and cultural context. Understanding disability from this perspective also reinforces Sherry’s (2008) contention that definitions of disability are “unstable and open to contestations” (p. 11) and they occur “alongside multiple other identities (such as, sexuality, ‘race’, and ethnicity, socioeconomic status, etc.” (2008, p. 75). Thus “disability” is a generic word that incorporates a range of conditions and Complex aicethologies that do not follow an exact trajectory for each person diagnosed, (Burke & Fell, 2007; Rothman, 2003). This chapter introduces an alternative philosophical lens to critique international contemporary policies of social inclusion as they are implemented in and through neoliberal paradigms and the phases that have been used to research the goals of social inclusion. It also permits the reader to understand the complexity of the lived experience of intellectual disability. This philosophical approach posits that intellectual disability is appropriately understood when personal and cultural perceptions of impairment and the actual lived experiences of persons are integrated. This form of analysis is presented in later chapters. The survey reveals that a person’s experiences and how non-peers treat them emanates from the social and cultural reactions to intellectual disability.

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1.2 Philosophical Lens Striker (1997) argues that to investigate the impact of social inclusion on the lives of persons living with an intellectual disability in society requires “a method more critical, even more militant, than to address [disability] in terms of exclusion” (1997, p. 15). Some scholars have developed terms such as ‘ableism’ and ‘disablism’ to understand the phenomenon of why persons living with a disability hold a secondary status to persons who do not live with any form of disability. ‘Ableism’ refers to “the widespread policies and practices that perpetuate certain ways of being human as “‘the perfect species-typical’ and therefore essential human” (Campbell, 2001). ‘Disablism’ draws our attention to the “discriminatory, oppressive or abusive behaviours arising from the belief that disabled people are inferior to others” (Miller, Parker, & Gillinson, 2004). These approaches share a similarity with the technique used in this book to address social inclusion, even though the methodology in this book emanates from philosophy of personalism and in particular from the work of philosophers who can be associated with “continental philosophy”. The term, “continental philosophy” itself is a disputed concept— although it is a well-defined domain of philosophy, it may not accurately define the subject matter (Critchley, 2001; Glendinning, 2006). Regardless of how the critical thinking is named or if ‘continental philosophy’ is a separate branch of philosophy, this approach to analysing western policies of social inclusion scrutinizes with the intention of providing wisdom and knowledge for the future practice. The means of investigating is through an “emphasis on social, cultural and historical conditions of thought and existence” (West, 2010, p. ix) that focuses on persons, social interactions, ideology and structures. Critchley (2001, pp. 54–74) suggests that a model can be deduced from “continental philosophy” that the methodology differentiates it from “analytic philosophy” and explains how it has been used to critique “social practices” (p. 54) whilst aiming to initiate positive social changes. Critchley’s (2001) model is reliant on three concepts: critique, praxis and emancipation. Praxis has a history in philosophy that extends from Aristotle (trans. Irwin, 1999, 1094a-13b) to contemporary theorists such

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as Habermas ([1996] 2007) and refers to action, activity and practice. Critique, then, is the detailed assessment and analysis of a social practice (or praxis) using history, culture and tradition in such a way that it demolishes what is perceived as knowledge and best practices for the existing traditions or best practices. The purpose of critique is that existing practices are unjust and thus unable to positively influence and impact fully on social practices. This approach identifies what type of transformation is needed to emancipate the social practice and create something different. The transformation challenges individuals and/or collective praxis to become emancipated or “liberated” from the unjust praxis to conceive new possibilities. The desired outcomes include improving personal lives. The emphasis in critique is to assess the ambitions of social inclusion policies. Scholars have established different sets of priorities that can be used to assess how successful social inclusion policies are for persons living with an intellectual disability. The indicators developed by Emerson and McVilly (2004) serve a useful purpose of understanding, how the majority of persons living with an intellectual disability are socially included or are part of “mainstreaming” (Department of Health, 2001, p. 24), that is, part of the social fabric of society. The indicators include: 1. The number of friends a person has outside his/her home. A friend in this context is defined as a person with whom the person living with an intellectual disability meets on a regular basis and shares activities. Friends are also persons who we can confide in and support each other, although this will always vary to greater or lesser extents. 2. The number of neighbours a person living with an intellectual disability knows. This means neighbours know him or her by name and who are known by the person living with an intellectual disability. 3. The regularity with which the person living with an intellectual disability has contact with his/her family and the quality of this rapport; and 4. The setting where friendships occur—is it through normative patterns? The Emerson and McVilly (2004) study demonstrated that encounters of friendships they considered were confined to the person’s home rather than spread across multiple geographic environments. These friendships

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were atypical of the normative friendships that persons living without an intellectual disability experience. This emphasis on persons living with an intellectual disability and their unique value as a person qua person through participation in typical social activities is consistent with the philosophy of personalism (Mounier, 1938). This is explored in detail in Chap. 2. The term personalism was identified as a philosophical school of thought from the nineteenth century, and although it has many different versions, the fulcrum holds that persons are infinitely unique and the “ultimate explanatory, epistemological, ontological, and axiological principle of all reality” (Williams & Bengtsson, 2018, p. 1). Personalism also gives priority to personal relationships and understands that they constitute our personhood and facilitate a more accurate insight into the opaque nature of the human being or person and his/her life experiences that philosophy has not achieved. The critique also describes the effects of the three different spheres of life persons living with an intellectual disability are situated within. Their experience of oppression is congruent with Thompson’s (2003) tri-­ dimensional PCS analysis. Griffiths (2016) notes that Thompson applied existential thought to social work practices and how this influenced the development of his non-discriminatory model to challenge oppression of persons “at personal, cultural and structural levels” (p. 25). PCS refers to the Personal, Cultural and Structural spheres of society. Thompson’s (2003) analyses of the variables and the complexities that impact on persons who have experienced discrimination and oppression can be applied to the lives of persons living with an intellectual disability. He proposes a multi-variable paradigm that is permeated with relevant practice examples. Thompson’s PCS measures demonstrate how each dimension acts separately and yet interacts and is interrelated. In the individual, or personal (P), sphere, every person has thoughts, feelings and preconceived ideas that influence how a person acts towards another person or group. The second sphere, cultural (C), calls attention to the practices persons use in their daily living through sharing life in social and geographical spaces. At the structural sphere (S), Thompson argues, “The S level comprises the macro-level influence and constraints of the various social, political and economic aspects of contemporary social order” (2003, p. 17). Thompson also articulates how the Personal sphere is inserted in

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the Cultural sphere that in turn is also immersed in the Structural sphere (2003, p. 18). The merit to incorporating Thompson’s analysis is that it holds open the possibility of change. Change can and does occur, albeit education and personal experiences are potentially a necessary condition for change to occur. This is the philosophical lens or methodological structure used in this book. The critique, then, is of the existing praxis of social policies of inclusion for persons living with an intellectual disability in western societies. This critique extends over a number of chapters. Chapter 1 details the philosophy of personalism and John Macmurray’s (1961, 1969) nexus with personalism. Julia Kristeva’s (2006, 2010, 2013) theory of disability is an innovative approach to understanding the lived experiences of persons. The theory embraces the notion of embodiment through addressing the issue of human vulnerability (Kristeva and Hartman, 2010)  while also accounting for the adverse role culture holds in persons with disabilities attaining socially inclusive roles in societies. Kristeva’s theory of disability is grounded in her academic background and her personal experience of disability. These theoretical perspectives are a form of emancipation. That is, they are both individual and collective means of conceiving alternative lifestyles, not solely for persons living with an intellectual disability but also for all members of society. The focus of Chap. 2 is on persons living with an intellectual disability as they continue to remain socially excluded from their communities in western societies. Community living programs have become the dominant paradigm in these nations. On the one hand, persons living with an intellectual disability have been “invading [the] consciousness” (Macmurray, 1961, p. 68) of persons living without an intellectual disability, local communities and wider society. On the other hand, persons living with an intellectual disability are hidden insomuch as the research indicates persons living with an intellectual disability do not actively participate in social, economic or cultural activities (Emerson & McVilly, 2004; Slee & Allen, 2001; Verdonschot, deWhitte, Reichrath, Buntinx, & Curfis, 2009). Persons living with the experience of an intellectual disability have yet to benefit from the potential richness identified by Emerson and McVilly’s (2004) measures of social inclusion. I propose that persons living with an intellectual disability are now economically

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ostracized from the workforce and that they remain socially and relationally isolated from the ordinary rhythms of life in their local community. In Chap. 3, the critique assesses the neoliberal paradigm (praxis) used in western nations to administer, fund and manage the provision of disability services. The National Disability Insurance Scheme, introduced in Australia in 2013, is used as an example of how, despite contemporary accepted rhetoric and recognized practices, the system does not appear to be surmounting social exclusion barriers faced by persons living with an intellectual disability. Chapter 3 highlights how persons living without the experience of an intellectual disability in the majority, fail to engage with persons living with an intellectual disability and the consequences for the latter. The consequences are such that persons are regulated to inferior social categories and stigmatized (North & Fiske, 2014). Chapter 4 focuses on praxis or social practices and utilizes the research and theory of Foucault (1979, 1989, 1994) to contextualize how the western notion of disability qua disability mitigates against enabling and realizing the goals of social inclusion policies. This chapter also concentrates on critique of tradition from a cultural practice perspective and I argue that we perceive intellectual disability negatively, albeit unconsciously. Chapter 5 is a reflection on the notion of belonging and hospitality and envisages ways in which persons living with an intellectual disability could be invited into communities. The final chapter considers the points of divergence with the principles and business activities of a personalist paradigm. It proposes innovative insights that might offer individual and collective practices that would provide persons living with an intellectual disability with opportunities to participate more fully in normative lifestyles. It takes the neoliberal paradigm, the National Disability Insurance Scheme (NDIS), as a model to critique the philosophical values associated with implementing social policies of inclusion.

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1.3 Phases of Contemporary Disability Research Social welfare services are a universal term that can be used to describe the provision, by government and benevolent organizations, of basic amenities that promotes the well-being of persons and society. These services incorporate, in western societies, a range of components (structural, bodily, activities, support and so forth) that function as essential constituents for individual well-being and quality of life. The philosophical principles inherent in global social welfare services have a number of purposes aimed at maximizing a person’s well-being and quality of life. These philosophical principles refer to treating the persons receiving the welfare service as consumers/customers who know their needs and, in the context of a free market, will have their needs met. In addition, the market-­ place principles of demand and supply will regulate the type, quantity and quality of service provision. Regulation by the government is pitched at service providers: they are to be efficient and effective and deliver qualitative services. The funding and provision of services to persons living with all forms of disability are included in the term social welfare services. Bradley (1996) suggests there have been two phases to the research focused on deinstitutionalization of persons living with an intellectual disability. The first phase examines the dismantling of the institution and then analyses how the lives of persons living with the experience of an intellectual disability have changed post-institutionalization. The purpose of this research centres on answering questions such as: Are persons leading “better” lives in the community? What has actually changed for persons living now in smaller residences? Edgerton’s (1967) initial interviews with persons living with an intellectual disability in the United States post-institutionalism, and his follow up study (1993), provide insights into how the lives of persons living with an intellectual disability benefitted and how personal and functional skills improved through living in the community. Other examples of this type of research can be found in the United Kingdom and Australia. For instance, in the United Kingdom, Forrester-Jones (2006) conducted a longitudinal study of persons living with an intellectual disability that traced their lives after they

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left an institution. Similarly, in Australia, studies by Young, Sigafiss, Ashman, and Grevall (1998) and Clement and Bigby (2010) offer overviews of deinstitutionalization processes for persons living with an intellectual disability. The second phase is analytically focused and investigates significant yet obscure characteristics of deinstitutionalization that are interdependent and which will contribute to the delivery of better personal outcomes. Mansell and Ericsson’s (1996) study offers a comprehensive review of the changes that have occurred in a number of western societies and unveils wisdom from these experiences. The research also articulates the gaps that remain post institutionalization. These studies are drawn from Britain, Scandinavia and the United States. The methodology used assesses how policy is translated into practice, what positive effects have resulted, what gaps and unintended consequences occurred and how congruent policies are with the “social model of disability” (Oliver, 1990). The focus on the “social model of disability” results from these western nations adapting this framework for action—to a greater or lesser extent—when they first initiated deinstitutionalization processes. Terzi (2004) argues the social model has limitations because it posits disability solely as a social construct and this fails to incorporate the interdependence between impairment, disability and society. However, she does note the merit of the model is in reminding persons of the “simplistic views on the experience of disability and more importantly, on the oppressive nature of some disability arrangements” (pp. 155–156). There has been then, in the institutional, professional and personal spheres, considerable efforts directed at social inclusion that support persons living with an intellectual disability to be members of their local community. Although the term “social inclusion” emerged in France in the 1970s and has been adopted by other western nations as a concept to alleviate inequality, it is difficult to define exactly (Silver, 1994, p. 536). As a concept “social inclusion” aims to shift the emphasis of a person’s (or group’s) socio-economic status to incorporate other dimensions such as actual participation in society (that is, community membership), access to education, transport, health and whether or not society on the whole holds a positive or negative view towards the person (or groups) (Azpitarte, 2015). It might then be more appropriate to conceptualize “social

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inclusion” as pluralistic with a cluster of characteristics rather than as a single materialistic indicator. Although scholars have offered adequate definitions for their case studies and research on the success of “social inclusion”, some findings reveal successes and practical strategies (Van Asselt, Buchanan, & Peterson, 2015), whilst others reveal concerning examples of isolation (Amado, Stancliff, McCarron, & McCallion, 2013) and abuse (Sherry, 2010). Some findings note how historical negative imagery and/or decades of marginalization have impacted on persons living with an intellectual disability (Goggin & Newell, 2005; Wolfensberger, 2000; Yazbeck, McVilly, & Parmenter, 2004). Nonetheless, one group of Australian researchers (Gooding, Anderson, & McVilly, 2017) noted positive outcomes with their findings, revealing “several positive practices and well-defined skillsets” (p. 30) that enable persons living with an intellectual disability to lead good lives. However, they also note that in the majority of cases, their research indicates that “social inclusion is not necessarily well-defined across policy and service provision” (p. 22) and this is of concern since “the prominence of ‘inclusion’ in [the] major national policy shifts towards “personalization” and individualized funding under the NDIS” (p. 30). The NDIS refers to the National Disability Insurance Scheme, which is the Australian system of making available “reasonable and necessary” (Productivity Commission, 2017, p.  3) supports that enable persons living with an intellectual disability to live in local communities and benefits from policies of social inclusion.

1.4 Terminology I use four key concepts throughout this book and I would like to briefly describe them here. A more in-depth discussion occurs in subsequent chapters. They are invading consciousness (Macmurray, 1961, p. 68), social policy of inclusion, personalism (Mounier, 1938, p. 138) and social role valorization (Wolfensberger, 1983). Invading consciousness refers to what I perceive has occurred for persons living with, and persons living without, an intellectual disability. Persons living with an intellectual disability, in the majority in western nations, are living in local communities. Regardless of the circumstances of the

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living arrangements, the assimilation process for persons living with an intellectual disability is different when compared to other persons living as peers. When new persons become part of a local community, we tend to notice these persons as neighbours and we speak to each other. If there are local shops, we develop relationships with the proprietor(s) and generally we participate together in the local community. If you like, the new neighbours become aware of their new surroundings and persons become aware of each other. We mostly develop more meaningful relationships as we establish whether we share similar interests, activities, feelings and beliefs. If there is symmetry we can develop friendships that extend over many years. This, I argue, has not occurred for persons living with an intellectual disability in local communities, despite being in geographical proximity to other persons. One immediate reason why this may have failed to occur has been the lack of effective education programs targeted at social relations between all persons. The limited inclusive educational, social and recreational opportunities afforded to these persons have had enormous consequences. These include envisaging persons living with an intellectual disability as having needs that exclude a focus on competency, human development, personal flourishing and diverse personal relationships. The results, however, see persons living with an intellectual disability being ostracized from normative rhythms of life enjoyed by persons living without an intellectual disability. The former are thus socially ostracized from their local community and society in general and fail to benefit from systemic changes in the cultural and cultural and societal spheres. The second concept social policy is a term that is widely used in research areas in the humanities. I am using it here for a specific purpose; first, to refer to the impact western government decisions have on the lives of persons living with the experience of an intellectual disability. Thus the term is used to refer to the set of activities that central, regional and local governments, service providers, statutory agencies use to implement their mandated government strategies, “from signals of intent to final outcomes” (Cairney, 2012, p.  5). Social policy is more often than not an incremental process, that is, it responds to both internal and external influences, to stakeholders and formal and informal networks. This implies that social policies are also a set of practices that uses a body of

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knowledge to inform its operations/practices (Gill, Singleton, & Waterton, 2017). The knowledge used to inform these practices is derived from medicine and the social sciences. The third term is personalism. Personalism is this branch of philosophy that holds that all human life is unique and respected for its own sake; persons are ends in themselves. The prominence it gives to a human person also extends to social and political intercourse, as persons are both subject and agent and a person’s identity is discerned and delineated through their relationships. A second critical aspect of personalism that is relevant to our study of social policies of inclusion for persons living with an intellectual disability is the inseparability of feelings and emotions  (Maritain, 1947 [1985]). Personalism argues that “we exile…[feelings and emotions] from our talk and thought about persons at our peril” (Beauregard & Smith, 2016, p. 17), since our actions and beliefs tend to act in tandem. This also implies that “action”, that is, our agency and how we act as persons, is essential to our personhood; we are typically judged by what we do, by persons who are important to us, by others and by ourselves. The fourth term frequently used is social role valorization (Wolfensberger, 1983). This term emerged first from the normalization principle, that it is appropriate for persons living with an intellectual disability to experience typical or normative patterns of life that all persons in the society experience (Nirje, 1969). Wolfensberger (1983) advanced this concept of normalization substantially, to highlight the devalued roles that are ascribed to persons living with an intellectual disability. Social role valorization  Wolfensberger, 1998) transferred the problem of intellectual disability from the mind and bodies of persons to the ideologies of the persons who influenced policy-making and care practices. Wolfensberger (1972) defines ideologies as the “culmination of beliefs, attitudes and interpretations of reality that are derived from one’s experiences, one’s knowledge of what are presumed to be facts and above all, one’s values” (p. 7). Thus, as a theory, social role valorization offers an explanation for negative cultural attitudes and institutional behaviour that contribute to the social and economic devaluation of persons living with an intellectual disability. It also posits strategies that can be utilized to mitigate these adverse living circumstances. Similar to other discourses, social role valorization has its critics (e.g., Barns, Mercer, & Shakespeare, 1999; Oliver,

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1996); however, what is often overlooked in these appraisals is the first principle of the theory as a reflective practice. In this sphere, the theory aims at influencing individual and societal perceptions of the social role granted to persons; however, often when modern managerialist interpretations are applied to the theory, they can distort the principle through developing formulaic approaches and measurable outcomes and fail to either acknowledge social roles  Or personal friendships (Carling-­ Jenkins, 2014).

1.5 Conclusion The theme of this book is that, since social policies of inclusion and community living programs have become the dominant paradigm in western societies, persons living with an intellectual disability have been “invading [the] consciousness” (Macmurray, 1961, p.  68) of persons living without an intellectual disability, local communities and wider society. That is, the greater the number of persons living in smaller congregate care dwellings with families or in independent situations offers persons with intellectual disabilities a physical presence in  local communities. However, persons living with an intellectual disability are hidden insomuch as the research indicates that persons do not actively participate in social, economic or cultural activities (Emerson & McVilly, 2004; Verdonschot et al., 2009). This book explores, despite the introduction of deliberate legal and policy frameworks, how “invading consciousness” has failed to address Thompson’s (2003) PCS measures and enable persons living with an intellectual disability to have a relational, social, economic and political place in society.

References Amado, A.  N., Stancliff, R., McCarron, M., & McCallion, P. (2013). Social inclusion and community participation of individuals with intellectual/ developmental disabilities. Intellectual and Developmental Disabilities, 51, 360–375. https://doi.org/10.1352/1934-9556-51.5.360

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Azpitarte, F. (2015). Social exclusion monitor bulletin. Research Bulletin. Melbourne, Australia: Brotherhood of St. Laurence. Barns, C., Mercer, G., & Shakespeare, T. (1999). Exploring disability: A sociological introduction. Malden, MA: Polity Press. Beauregard, J., & Smith, S. (2016). In the sphere of the personal: New perspectives in the philosophy of persons. Wilmington, DE: Vernon Press. Bradley, V. (1996). Forward. In J.  Mansell & K.  Ericsson (Eds.), Deinstitutionalisation and community living: Intellectual disability services in Britain, Scandinavia and the USA. London: Chapman and Hall. Burke, P., & Fell, B. (2007). Childhood disabilities and disadvantage: Family experiences. In P.  Burke & J.  Parker (Eds.), Social work and disadvantage: Addressing the roots of stigma through association (pp.  45–62). Philadelphia, PA: Jessica Kingsley Publishers. Cairney, P. (2012). Understanding public policy. Basingstoke: Palgrave Macmillan. Campbell, F. (2001). Inciting legal fictions: Disability’s date with ontology and the ableist body of the law. Griffith Law Review, 10, 42–62. ISSN: 1038-3441. Carling-Jenkins, R. (2014). Disability & social movements: Learning from Australian experiences. Surrey, UK: Ashgate Publishing. Carlson, L. (2010). The faces of intellectual disability: Philosophical reflections. Bloomington, IN: Indiana University Press. Clapton, J. (2009). A transformatory ethic of inclusion. Rotterdam, Netherlands: Sense Publishers. Clement, T., & Bigby, C. (2010). Group homes for people with intellectual disabilities: Encouraging inclusion and participation. Gateshead: Athenaeum Press. Critchley, S. (2001). Continental philosophy: A very short introduction. Oxford: Oxford University Press. De Vinck, C. (1990). The power of the powerless: A brother’s legacy of love. New York: Doubleday. Department of Health. (2001). Valuing people: A new strategy for learning disability in the 21st century. London: HMSO. Edgerton, R. (1967). The clock of competence. Berkeley: University of California Press. Edgerton, R. (1993). The clock of competence: Revised and updated. Berkeley: University of California Press. Emerson, E., & McVilly, K. (2004). Friendship activities of adults with intellectual disabilities in supported accommodation in Northern England. Journal of Applied Research in Intellectual Disabilities, 17, 191–197. https:// doi.org/10.1111/j.1468-3148.2004.00198.x

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Forester-Jones, R., Carpenter J., Coolen-Schrijner, P., Cambridge P., Tate, A., Beecham, J., Hallam A., Knapp, M., & Wooff, D. (2006). The social networks of people with intellectual disabilities living in the community 12 years after resettlement from long-stay hospitals. Journal of Applied Research in Intellectual Disabilities, 19(4), 285–295. https://doi.org/10.1111.j/1468.314 8.2005.00263.x. Foucault, M. (1979). Discipline and punish. New York: Penguin Books. Foucault, M. (1989). Madness and civilisation: A history of insanity in the age of reason. London: Routledge. Foucault, M. (1994). The birth of the clinic: An archaeology of medical perception. New York: Vintage Books. Gill, N., Singleton, D. V., & Waterton, C. F. J. (2017). The politics of policy practices. The Sociological Review, 65(2), 3–19. https://doi. org/10.1177/0081176917710429 Glendinning, S. (2006). Idea of continental philosophy. Edinburgh: Edinburgh University Press. Goggin, G., & Newell, C. (2005). Disability in Australia: Exposing a social apartheid. Sydney: University of New South Wales. Gooding, P., Anderson, J., & McVilly, K. (2017). Disability and social inclusion ‘down under’: A systematic literature review. Melbourne: Melbourne Social Equity Institute. Griffiths, M. (2016). Applying Gabriel Marcel’s thought in social work practice. Marcel Studies, 1, 24–39. Habermas, J. ([1996] 2007). Theory and practice (J.  Viertel, Trans.). Malden, MA: Polity Press. Kittay, E. F., & Carlson, L. (2009). Cognitive disability and its challenge to moral philosophy. Oxford: Blackwell Publishing. Krall McCray, L. (2017). Re-envisioning independence and community: Critiques from the independent living movement and L’Arche. Journal of Social Philosophy, 48, 377–398. https://doi.org/10.1111/josh.12195 Kristeva, J. (2006). At the limits of living: To Joseph Grigely. Journal of Visual Culture, 5, 219–225. https://doi.org/10.1177/1470412906066910 Kristeva, J. (2013). A tragedy and a dream: Disability revisited. Irish Theological Quarterly, 78(3), 219–230. https://doi.org/10.1177/0021140013484427 Kristeva, J., & Herman, J. (2010). Liberty, fraternity, and … vulnerability. Women’s Studies Quarterly, 38, 251–268. Macmurray, J. (1961). Persons in relation. London: Faber & Faber. Macmurray, J. (1969). The self as agent. London: Faber & Faber.

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Mansell, J., & Ericsson, K. (Eds.). (1996). Deinstitutionalisation and community living: Intellectual disability services in Britain, Scandinavia and the USA. London: Chapman and Hall. Maritain, J. ([1947] 1985). The person and the common good (J.  Fitzgerald, Trans.). Notre Dame, IN: University of Notre Dame Press. Miller, P., Parker, S., & Gillinson, S. (2004). Disablism: How to tackle the last prejudice. London: Demos. Moeller, C. (2016). “We are not disposable”: “Psychiatric”/psycho-social disabilities and social justice. In J. Beauregard & S. Smith (Eds.), In the sphere of the personal: New perspectives in the philosophy of persons (pp.  223–245). Wilmington, DE: Vernon Press. Mounier, E. (1952). Personalism (P.  Mairead, Trans.). Notre Dame, IN: University of Notre Dame Press. Mounier, E. (1938). A personalist manifesto (Monks of the St. John’s Abbey, Trans.). New York: Longmans, Green & Co. Nirje, B. (1969). The normalisation principle and its implications for human management implications. In R. Kugel & W. Wolfensberger (Eds.), Changing patterns for residential services for the mentally retarded (pp.  179–195). Washington, DC: President’s Committee on Mental Retardation. North, M., & Fiske, S. (2014). Social categories create and reflect inequality: Psychological and sociological insights. In J. Cheng, J. Tracy, & C. Anderson (Eds.), The psychology of social status. New York: Springer. Nouwen, H. (1997). Adam: God’s beloved. New York: Orbis Books. Oliver, M. (1990). The politics of disablement. Basingstoke, UK: Macmillan. Oliver, M. (1996). Understanding disability: From theory to practice. London: Sage. Productivity Commission. (2017). National Disability Insurance Scheme (NDIS) costs. Study Report. Canberra: Australian Government. Reinders, H. S. (2008). Receiving the gift of friendship: Profound disability, theological anthropology, and ethics. Grand Rapids, MI: Wm. B. Eerdmans. Rothman, T. (2003). Social work practice across disability. Boston, MA: Pearson Education Co. Sherry, M. (2008). Disability and diversity: A sociological perspective. New York: Nova Science Publishers Inc. Sherry, M. (2010). Disability hate crimes: Does anyone really hate disabled people? London, UK: Routledge. Silver, H. (1994). Social exclusion and social solidarity: Three paradigms. International Labour Review, 133, 531–578. Slee, R., & Allen, J. (2001). Excluding the included: A reconsideration of inclusive education. International Studies in Sociology of Education, 11, 174–192. https://doi.org/10.1080/09620210100200073

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Striker, H. (1997). A history of disability (W.  Sayers, Trans.). Ann Arbor: University of Michigan Press. Terzi, L. (2004). The social model of disability: A philosophical critique. Journal of Applied Philosophy, 21, 141–157. Thompson, N. (2003). Promoting equality, challenging discrimination and oppression in the human services. London: Palgrave Macmillan. Van Asselt, D., Buchanan, A., & Peterson, S. (2015). Enablers and barriers of social inclusion for young adults with intellectual disability: A multidimensional view. Journal of Intellectual & Developmental Disability, 40, 37–48. https://doi.org/10.3109/13668250.2014.994170 Verdonschot, M., de Whitte, L., Reichrath, P., Buntinx, W. H. E., & Curfis, L.  M. G. (2009). Community participation of people with an intellectual disability: A review of empirical findings. Journal of Intellectual Disability Research, 53, 303–318. https://doi.org/10.1111/j.1365-2788.2008.01144.x West, D. (2010). Continental philosophy: An introduction (2nd ed.). Cambridge: Polity Press. Williams, T.  D., & Bengtsson, J.  O. (2018). Personalism. The Stanford Encyclopedia of Philosophy (E. N. Azlta, Ed., Spring 2018 ed.). Retrieved from https://plato.stanford.edu/entries/personalism/ Wolfensberger, W. (1972). The principles of normalization in human services. Toronto, Canada: National Institute on Mental Retardation. Wolfensberger, W. (1983). Social role valorization: A proposed new term for the principle of normalization. Mental Retardation, 21(6), 234–239. https://doi. org/10.1352/1934-9556-49.6.435 Wolfensberger, W. (1998). A brief introduction to social role valorization: A proposed higher-order concept for addressing the plight of societally devalued people, and strutting human services (3rd ed.). Syracuse, NY: Training Institute for Human Service Planning. Wolfensberger, W. (2000). A brief overview of social role valorization. Mental Retardation, 38, 105–123. https://doi.org/10.1352/0047-6765(2000)038< 0105:ABOOSR>2.0.CO;2 Yazbeck, M., McVilly, K., & Parmenter, T. R. (2004). Attitudes towards people with intellectual disabilities. Journal of Disability Policy Studies, 15, 97–111. https://doi.org/10.1177/10442073040150020401 Young, L., Sigafiss, J. S., Ashman, A., & Grevall, P. (1998). Deinstitutionalisation of persons with intellectual disabilities: A review of Australian studies. Journal of Intellectual and Developmental Disabilities, 23, 155–167. https://doi. org/10.1080/13668259800033661

2 The Integrity of Persons

2.1 Introduction This chapter outlines the philosophy of “personalism” and concentrates on John Macmurray’s exposition of “personalism”. This theorist was chosen because his conception and thesis of persons-in-relation as the leitmotif of a human being is instructive for our consideration of the social policies of inclusion regarding intellectual disability and how they have positively influenced the lives of persons. Social personhood is a constant theme in Macmurray’s philosophy and he presented philosophical form and method “capable of analyzing personality, its modes of experience and its relatedness to both the material and human world” (Conford, 1996, p. 20). Macmurray’s notion of persons-in-relation argues that what counts as being a person is how persons engage through personal relationships with other persons. That is, a person is unintelligible unless his/ her interactions and intercourse with other persons is considered. This is similar to what Pfeiffer in 2005 argues: that “people with disabilities (like all people) are humans, Foible, make mistakes and are capable of taking risks” (p. 139), however are persons living with an intellectual disability allowed to live this way? The general myths that are often held of persons © The Author(s) 2020 D. P. Treanor, Intellectual Disability and Social Policies of Inclusion, https://doi.org/10.1007/978-981-13-7056-4_2

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living with the experience of an intellectual disability appear to indicate that these persons are not permitted to take risks like other persons. In human services practitioners often describe the person they work with in negative terms, for example Saint-Jacques, Turcotte, and Pouliot (2009) discovered that on 72% of occasions, practitioners used weakness words rather than strength-based words about persons they worked with. This contrasts with contemporary theorists such as Kristeva (2006, 2013); Kristeva and Herman (2010); Vanier (1998) and Reinders (2000, 2008). These scholars offer a positive ontology of disability, that is, they present persons as competent, engaged with other persons and capable of living flourishing lives. This sets the framework for the following chapter that analyses neoliberalism, culture and belonging. The first section briefly explores the central constituents of personalism as a philosophy. The second presents a reading of Macmurray, which locates his philosophy within the tradition of personalism. The penultimate section presents Kristeva’s (2006, 2013); Kristeva and Herman (2010) theory. Finally, in Sect. 2.4, Macmurray’s thesis, the form of the personal, its nexus with Kristeva (2006, 2013); Kristeva and Herman (2010) and its relevance with social policies of inclusion are discussed.

2.2 The Central Constituents of Personalism In the first half of the twentieth century, the term personalist was applied to a range of philosophers who shared a symmetry of critical thinking. In the United States, persons such as Border Parker Browne, Edgar Sheffield Brightman, Albert Knutson, Walt Whitman, Martin Luther King and William James have been identified as personalists. In Europe, personalism can be found in the thoughts of Nicolai Berdyaev in Russia, Karl Wojtyla in Poland, Martin Buber and Max Scheler in Germany, in Emmanuel Mounier, Jacques Maritain and Gabel Marcel in France. British personalists include Austin Farrer, John Macmurray and Michael Polanyi. Contemporary personalists include Beauregard (2019), Beauregard and Smith (2016), Olof Bengtsson (2006), Burgos (2012), Smith (2017), Williams and Bengtsson (2018). Olof Bengtsson (2006) and Buford (2014) trace the roots of personalist philosophy across cultures and time to locate it in the overall history of philosophy. As a school

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of thought, personalists hold divergent views on what they mean by “person” and this different emphasis in personalism has led some thinkers (e.g., Mounier, 1938, 1952, pp.  483–488) to propose there are many forms of personalisms rather than a categorical personalism. A primary and distinctive characteristic of personalism relates to the prominence it gives to a human person in social and political intercourse. Persons are a subject and agent in action and a person’s identity is discerned and delineated through a person’s relationships. Macmurray explains: The self must be conceived, not theoretically as subject, but practically as agent. Secondly, human behaviour is comprehensive only in terms of a dynamic social reference; the isolated, purely individual self is a fiction. In philosophy this means, as we shall see, that the unity of the personal cannot be thought as the form of an individual self, but only through the mutuality of personal relationship. In face of both difficulties a radical modification of our philosophical system is demanded. The first requires us to substitute for the Self as subject, which is the starting-point of modern philosophy, the Self as agent; and to make this substitution is to reject the traditional distinction between subjective and objective. The second compels us to abandon the traditional individualism or egocentricity of our philosophy. We must introduce the second person as the necessary correlative of the first, and to do our thinking not from the standpoint of the ‘I’ alone, but the ‘you and I’. (Macmurray, 1969, p. 38)

A second critical aspect of personalism that is relevant for our study of social policies of inclusion for persons living with an intellectual disability is the inseparability of feelings and emotions. Often emotions and feelings are used interchangeably to explain the same phenomenon, yet they are different sides of a coin; emotions are event-driven, while feelings are latent learned behaviours that emanate from an external event. Beauregard and Smith would argue that “we exile…[feelings and emotions] from our talk and thought about persons at our peril” (2016, p. 17) since to rely on either rationality, feelings or emotions alone is fiction. Macmurray (1969) would agree that feelings and emotions should be part of our philosophical psychology since our actions and beliefs tend to interact with each other. This also implies that action, that is, how we can

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act as persons, is essential to our personhood; we are typically judged by these three categories—by persons who are important to us, by others and by ourselves. In addition to this central commonality, Brightman (1950), Knudson (1927) and Williams and Bengtsson (2018) identify further characteristics that are common to personalism. For the purpose of expediency, I will only consider the five common themes identified by Beauregard (2019) and Williams and Bengtsson (2018). These are: 1. There is a radical difference between persons and non-persons though there is an interrelationship between persons, animals and nature 2. The dignity of the person 3. Interiority and subjectivity 4. Self-determination 5. Relationality and communion (Williams & Bengtsson, 2018) Accordingly, I will extrapolate the rationale underpinning these dimensions since it appears to me that a synthesis might provide a more reliable methodology to understand the connection between persons living with an intellectual disability and social policies of inclusion. The link between Kristeva’s argument and Macmurray’s thesis is: we are essentially “persons-­ in-­relation” who do not live in a vacuum. Kristeva’s case studies (2006); Kristeva and Herman (2010) present the environmental influences that impact on persons living with an intellectual disability. Macmurray (1969) demonstrates the role other persons and nature have on a person’s formation. Both scholars offer explanations of the interrelationship of persons with nature, which is plant and animal life, and their social and political environments. Gabriel Marcel (1936) uses the term “neighbour” to argue for a new type of relationship; he terms this a “fraternity”, which is an ordinary friendship shared by persons founded on mutual goodwill that is similarly found in positive kinship relationships (p. 130). It is these types of relationships, Marcel argues, that omit the inherent human dignity in each person. He states fraternal relations are, “essentially hetero-centric: you are my brother, I recognize you as such … and because you are my brother, I rejoice not only in anything good which may happen to you but also in acknowledging the ways in which you are superior to me.

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Why would I feel the need of being your equal? We are brothers through all our dissimilarities” (p.  132). We will also consider this concept of human dignity in Chap. 4 and the role of social relations between persons. Personalism is a school of social thought that aims to describe and make sense of the political, economic and social behaviour based on the ethical or metaphysical value of a person since s/he has preeminent value and is essential to measuring reality. This claim follows from personalism as an anthropology that includes a person’s search to lead a meaningful and flourishing life, which includes maintaining friendships and relationships with other persons. In centring persons as primary, the personalist anthropology allocates a secondary role to ideology, economics and politics. This approach allocates presence, the act of existing as valuable, which sends economic and other forms of productivity to the peripheral. Macmurray (1961, 1969) and other personalists incorporate the idea that all domains of social life need to be arranged to guarantee relational proximity between persons since personal well-being or flourishing of the individual and community is determined by the quality of personal relationships. The following practices serve as key characteristics for personalism, given the priority some personalists ascribe to persons as persons-in-­ relations. These are: • The quality of relationships and social well-being is of utmost importance to a person’s life. • Having concern for persons who might be experiencing disadvantages either in their social relations or in their access to material resources. • Providing the family with the necessary resources to act as the primary foundation space where persons can experience love and support from other persons. • If persons have lived positive emotionally robust family relationships, then there is the potential for persons to build positive relationships amongst persons in their neighbourhoods and cities. • Institutions that are created will share power with persons. At a systematic level consultations and slow decision-making process will be implemented as the most effective forms of organizational accountability.

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• In the political sphere there will be a commitment to acting with justice (in a broad sense) and working towards reconciliation in personal, institutional and political spheres when injustice has occurred. • Financial and other resources will be used to strengthen and enrich robust personal, social, commercial and political relationships. Some personalists acknowledge there is an interrelationship between human beings, animals and nature. However, modern European personalists who have been influenced by Catholicism (e.g., Burgos, 2012) believe that “person” is a single category and it is a serious error to use analogies drawn from the animal world. Aristotle’s view that “every realm of nature is marvelous” (trans. W. D. Ross, 2001, 645a16) and his methodology for defining a species in terms of its proximate genus and specific difference would be contested by some personalists. Thus, personalism might differ with Aristotle’s view and emphasis on a human being as a “political animal” (trans. W. D. Ross, 2001, 1253a7) because this could lead the “unacceptable reduction of the human person to the objective world” (Williams & Bengtsson, 2018). It would also fail to account for the personalist belief in the immaterial and primal uniqueness of the person, which understands that a person’s ultimate value is determined by the ontological significance of their being. Appropriately with this emphasis on personal ontology, personalism takes seriously the numerous facets of a human person which differ from our physical nature: time, horizon, transcendence, communication, intimacy, inner-life, sympathy, sense of emptiness, value, liberation and appropriation, to laugh, love and so forth. In their elucidation of the continuity of personalist thought, Beauregard and Smith (2016) describe some personalist theorists’ “anti-reductive” (p.  22) approach to understanding persons. Their aim is to be “more constructive” (p. 22) though rejecting the notion of the person as “pure reason” (p. 22). Personalists will, however, argue that persons are neither captured nor immobilized by and within these categories. Macmurray (1935) explains: the full existence of a person includes a material and an organic existence. Indeed, it would be more illuminating to point out that the idea of the organic and the material are, in fact, limitations in personal consciousness.

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We do not build up our conception of the personal from our knowledge of the material world. On the contrary, we reach the conception of matter by leaving out certain aspects of our personal experience which we consider to be peculiar to our personal and organic existence. The importance of this consideration is that it indicates that a personal conception of the world includes the organic or the material conception of it. Here again the persistent dualism between mind and matter dogs our footsteps. To assert that the world is spiritual is not to deny that it is material. In a properly personal conception of the world there is no denial of materialism. On the other hand, to assert materialism as the last word about reality is to deny its personal character and its organic character. (p. 223)

A common theme among personalists is the notion of persons as those who deliberately engage with each other in emotional and personal spheres since s/he is not an isolated individual. Rather: the human principle is, in principle, shared experience; human life, even in its most individual elements, is a common life and human behaviour carries always, in its inherent structure, a reference to the personal Other. All this may be summed up by saying that the unit of personal existence is not the individual, but two persons in personal relation; and that we are persons not by individual right, but in virtue of one another. The personal is constituted by personal relatedness. The unit of the persona is not the ‘I’, but the ‘You and I’. (Macmurray, 1961, p. 61)

The dialogical philosophy of Martin Buber (1966) is often presented as a form of personalism and his thesis concentrates on human interpersonal dialogue to accentuate the relational aspect of personalism. Buber locates a human being in the act of dialogue, in and as the primary word I-Thou. Buber argues: Man1 wishes to be confirmed in his being by man, and wishes to have a presence in the being of the other…. Secretly and bashfully he watches for a YES which allows him to be and which can come to him only from one human person to another. (1966, p. 71)  Read ‘person’. In all future reference to ‘man’, read person.

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One possible example of how this dialogical personalist philosophy is implemented is how persons who are in non-family relationships live and share life together. One such example occurs in the L’Arche Communities. Members of L’Arche communities, persons living with and without the experience of an intellectual disability have formed mutually adult appropriate meaningful friendships and relationships over the past fifty-five years. The communities are part of an International Federation across 38 countries and 4 continents. These relationships have brought to society’s attention the possibility of I-Thou relationships between persons of all abilities, gender and ethnicity. In establishing L’Arche, Jean Vanier has thus offered many persons living with the experience of an intellectual disability a biographical rather than a mere biological reality of personal experience. Vanier shifted the dominant paradigm from the 1960s of persons as useless, redundant, a burden to persons who have a personal history, needs, desires and who can live flourishing lives. Members who share lives together in L’Arche note how this implies a constant commitment to relationships, conversation, participation and encounters. The different other is revealed as a person: L’Arche is a school in personal relationships, which enables persons who are different to understand each other as unique persons by mutually exposing aspects of their character to each other and being accepted for their unique personhood (Mosteller, 1978; Vanier, 1998; Dansereau, 2018). Costello (2002) notes that Buber valued Macmurray’s philosophical acumen that “conceptualize[s] the form of the personal” (2002, p. 14, p. 322) since it offers a framework to explore the fundamental metaphysical truths of human existence: what it means to be human. Costello further argues: “Martin Buber, whom Macmurray knew more personally, considered himself to be the poet of this project” (2002, p.  15). The project Buber refers to is giving prominence to the “form of the personal”, that is, emphasizing the importance of persons and their interactions and interdependence in contemporary philosophy. The personalist distinction between persons and non-persons in the first instance, contributes to a reasoning process that has implications for how the former are to interact with other persons and their environment and other realities. It demands that each person honours and affirms the inherent uniqueness and value of each individual person. This notion of

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the uniqueness of human persons is contested (e.g., McMahan, 2002; Singer, 1994); however, personalists like Crosby (1996) and Wojtyla (1975) endorsed the notion of uniqueness. Crosby argues that Boethius’s argument implies that persons are not only an individual substance of a human nature, but also an irreplaceable being: a Buber or Macmurray or any other name, that is, there will only ever be one physical being known as Martin Buber with his experiences and relationships. Wojtyla argues the misinterpretation of Boethius’ definition focuses on the absence of a person’s “lived experience”, which offers a person an “eyewitness” view of their own self and personal experiences (1975, pp. 213–214). Zagzebski’s (2001) analysis of whether persons are unique assesses five definitions of a person that include notions developed by Boethius, Locke, Kant and Wojtyla. Her findings argue that human persons are infinitely valuable in virtue of their shared nature but that persons are “irreplaceably valuable because of nonqualitative features of their personhood” (2001, p. 410). If we accept this view of persons as unique, then persons are related to each other as equals. However, “this does not mean that they have, as a matter of fact, equal abilities, equal rights, equal functions or any other kind of de facto equality. The equality is intentional: it is an aspect of the mutuality of the relation” (Macmurray, 1961, p. 158). This is the form of personal interactions expected, since it is not contingent upon intelligence, personal skills or behavioural transgressions. Nonetheless, important for Macmurrian personalism is the reality that persons live in a world of value. Values are more than our biological actuality, and biology is a description of living things; culture and similar things are ways of being for a living organism, specifically a human person. They do not cancel each other out, they are not mutually exclusive and they are integral to our culture, conception of living a good life, ability to communicate and create and sustain meaningful or intrinsic relationships. One line of thought some personalists argue follows from the idea that persons are unique is that personal dignity is inherent in their ontological status (Beauregard, 2019). A person’s ontological status establishes a set of ethical demands on them and one such demand is affirming each person’s human dignity and his/her inherent personal value. Dignity in the most generic sense implies a particular and positive value to an entity (Sulmasy, 2018, p. 937). The word dignity emanates from the Latin word

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dignus and is used to refer to worth, honour and esteem. Indeed it implies what is being referred to has merit and is worthy of respect and importance. The term dignity is typically used in discourse about human persons, vis-à-vis human persons possessing a higher value or importance above other entities. Marcel (1963) advanced a notion of human dignity that is relevant to our discussion in which he argues that priority needs to be provided to the full range of human experiences. Marcel states: It is my own profound belief that we cannot succeed in preserving the mysterious principle at the heart of human dignity unless we succeed in making explicit the proper sacral quality peculiar to it … when we consider the human being in his nudity and weakness—the human being as helpless, as a child, the old man, or the pauper. (1963, p. 128)

This view of a person conceives of them as finite entities and this aspect of human experiences needs scrutiny, alongside vulnerability and mortality, for a proper comprehension of human dignity to occur. It is easy to attribute value and worth to economic or social roles, status and possessions. However, how can any person believe that finitude, weakness or vulnerability is worthy of respect in other persons? Marcel argues that the solution is dialectical since fragility alone is unable to provide the power necessary to omit respect. A reader of Marcel’s Le Dard, which Marcel argues is an exposition of human dignity, can respect Werner in his weakness at the end of the play and though it is not dignity per se, we can respect his honesty, courage and his ability to overcome the desire to have, that is to accumulate wealth, power and prestige (he could be recognized in France or Germany) and stay in the realm of being. A person can admire his decision to accept whatever outcome results from his act of being rather than holding on to his financial security, seeking possessions, esteem, or status. This act of being also confers him with power, respect and dignity for the nonqualitative features of his personhood. There is also an intersubjective dimension to human dignity for Marcel. The meeting of two persons can engage persons in finitude, weakness and vulnerability without necessarily focusing on their role or what the

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person has. Marcel refers positively to Levinas’ expression “face-to-face” of the uniqueness of the other person (Marcel, 1963, pp. 130–131). This contradicts relationships based on equality since in this matrix relations are ego-centric; they are claims to something (e.g., rights) and focus on having. In fraternal relationships we are equal because of our inequality, finitude, weakness, vulnerability, our uniqueness and in being nonpareil to each other. Other persons are not a threat and as we engage with the other in our lives, persons “will have become an integral part of our experience” and we can continue to enjoy the mystery of each other and what comes through our encounter (Marcel, 1963, p. 141). In congruence with other personalists, (Marcel, 1963; Macmurray, 1961) human dignity is relational. It moves beyond ascribing value to a person on the basis of personal intelligence, physical agility, social competence and so forth; rather, the idea of negating any single aspect of human character distracts from affirming our dignity as human persons. This paradigm challenges neoliberalism emphasis on individuality, efficiency and productivity and affirmation or value on the basis of achieving these outcomes. Marcel also argues that linking human dignity externally to “the objective world whose physiognomy is increasingly strange and threatening, entails in fact a pulverization of the subject” (1936, p. 165). He therefore argues this approach comprises human dignity and respect for the truth, and positions a person as a subject who is more than his/her actions. The analysis of this form of personal subjectivity (in the personalist tradition this subjectivity includes “interiority, freedom and personal authority” (Williams & Bengtsson, 2018)) reveals an immanent nature and unity that applies to actions and the inner happenings derived from our human and personal lived experiences. Macmurray (1969) explains that “action is choice,” it is “to do this and not that,” it is therefore “the actualization of a possibility, and as such it is a choice” (p. 139). As persons who exist in relation to each other, what can emerge through interactions are our character and our personality, which are influenced by the inner happenings and our lived experiences. Knudson (1927) informs us that, “personalism finds the ontologically real only in personality” (p. 66) and “it lays more stress on the will than the intellect and inclines to the view that life is deeper than logic” (p. 66). That is, personalism does not

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rely on reason only to substantiate its argument because it believes there is a ravine between thought and reality. It is not surprising that personalist emphasis on action and happenings supports the belief that persons are by nature free individuals. Brightman (1950) notes that personalism has investigated the psychology of personality to minimize analytic views of the mind and behaviourism. Many theorists explore the somewhat nebulous nature of freedom with such uniformity which reveals that it is never a question of acting simply without regard to anyone but oneself. Moreover, unlike Kant’s proposition, freedom is not an expression of pure reason nor is it Sartre’s power of choice: “the nothingness that inserts itself between motives and action” (Sartre, 1966, p. 71). One of Sartre’s motives in exploring freedom is to refuse determinism, and he argues that freedom is threatened by neither nature nor nurture. Rather, as Warnock (1971) states, he argues that persons create his/her own actions and identities. In personalism, freedom is the expression of personal existence of a being, thus, it “can be lived, but not seen” (Sartre, 1966, p. 71). Freedom is also participating in being, that is personal actions, forming our characters and living shared lives and establishing the parameters that are set by our capacity to engage in mutually reciprocal goodwill relationships as well as or in addition to more intimate and loving relationships. For Macmurray, freedom for persons means, “the absence of restraint upon action” (1935, p. 175) and it is expressed most fully by “the ability to live spontaneously (that is, for themselves) and in terms of the other (that is, for and in and by what is not of themselves” (1935, p. 84). A person acting according to this narrative expresses his/her authentic nature and freedom. An overall principle underlying personalism is how the nature of interpersonal interactions constitutes the social character of persons. Williams and Bengtsson highlight the distinction that some advocates of personalism articulate about the difference between “social nature” and “interpersonal communion” with the latter representing a permanent union established through personal ontology (2018, p. 19). A person’s ability to form friendships and enter into wider community personal networks is one social characteristic; however, persons engaging in intimate personable ways and belonging to other persons offer a more significant union than mere sociability. This notion of communion is more than a

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collection of like-minded persons; it is “a group of individuals united in a common life, the motivation of which is positive” (Macmurray, 1961, p.  157). Persons, of course, act together and in fellowship with each other; they cooperate to achieve joint purposes, and they include functional and social relationships. What underpins the social connection between persons is mutual affection and a positive unity that allows members to flourish. For many personalists, a world without personal relations is untenable; a person is a being-for-relation. For Macmurray (1961, 1969) this confirms the mutual interdependence persons have for each other. Interdependency provides the space for persons to practically maintain their health, personal, social and skill development. Persons who depend upon each other are therefore viewed as a positive aspect of personalism: It supports persons to meet their individual needs, their freedom and their flourishing as a community. It is through persons acting in interdependency that persons can reveal a person’s capacity to care, to be in a relationship with another human person and to be valued for their being. Macmurray states, “I need you to be myself ” (1961, p. 150) implying that when a person is acting rightly, s/he is acting for the other rather than oneself. The other is always a personal other and the agent strives to maintain positive personal relations with him/her. It is, therefore, through social intercourse that persons can reach an authentic human existence, which for personalists takes persons as naturally social members of self-­ perpetuating societies with the aim of human flourishing. The means of achieving this for Buber is through a life of dialogue. Buber has defined this life as a discussion and connection that includes the concrete participation of persons and assumes the presence of God in the relationship. Buber argues: The world of man is twofold, according to his twofold image. The attitude of the human being is twofold, according to the twofold nature of the basic words we speak. The basic words are not separate words but pairs of words. One basic word is the word-pair I-Thou. The other basic word pair I-It. (2017, p. 53)

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I-It refers to the impersonal meeting of persons with objects, or with unconnected persons who meet through work and its functional relationships, organization and impersonal associations. Thus, it is a detached form of relationship. I-Thou represents the world of relationships, conversations, participation and encounters. The engagement is dynamic and it incorporates the personal growth of persons towards freedom. In summary, a personalist and persons-in-relation perspective will challenge western nations’ dominant social policies of inclusion by proposing that personalist anthropology should take priority over assumptions about the nature of intellectual disability, the impact contemporary culture and values have on person’s lives and the situation of the disability policy in an economic or quasi-market place. Jonas Mortensen (2014) succinctly describes personalist anthropology in the following terms: • Humans are relational beings in need of a close and engaged interplay with other human in large or smaller communities, in order to thrive and develop our potential. • Humans have the capacity to engage, a capacity that we realize in freely taking responsibility for our own lives but also for our fellow human beings in local communities and societies at large. • Humans have inherent dignity that can never be relativized or diminished and which other humans and society have no right to suppress or violate. (p. 18)

2.3 J ohn Macmurray’s Conception of Personalism As part of Macmurray’s exploration of what it means to be human and to argue his philosophical thesis, he considers the nature and mode of existence of human beings. Macmurray identifies three types of nature with three corresponding types of freedom in the world. Nature is the capacity for phenomena “to act for oneself, from within outwards, so that the action expresses the agent and has its source wholly and simply in the agent” (Macmurray, 1936, p. 175). Freedom is the “absence of restraint

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upon spontaneity of action” (p.  175). The trilogy consists of material nature, living nature and human nature, with material nature referring to the nature of material bodies that behave mechanically, that is, with the laws of nature, and thus their behaviour can be predicated. Macmurray maintained a passion for and knowledge of science throughout his life; while studying the Greats at Oxford, he also studied chemistry and seriously considered taking science as his major (Duncan, 1990). Living nature is more complex. Macmurray notes, “the idea of adaptation to environment, of fitting in to one’s place in a complex organization or community; the ideas of progress and purpose, of the end to which the whole creation moves; the idea of service of the species and its development” (1936, p. 181) are all integral to living nature. Accordingly, the type of freedom in this context is understood as organic; the living organism is free to act and to realize their intrinsic qualities to their fullest degree. Furthermore, living organisms have life cycles that reveal their symbiotic interaction with their environment that, importantly, permits them to reproduce their kind while being able to adapt to maintain their species. Living nature, for Macmurray, is also a type of nature that expresses itself most fully in being able “to apprehend and enjoy a world that is outside of ourselves, to live in communion with a world which is independent of ourselves” (1936, p.  182). Living nature is also capable of knowing, enjoying and engaging with different phenomena in a way that contributes to enhancing its lifestyle. Macmurray argues that when we “think” or “feel,” what in fact we are doing is thinking or feeling about something or someone and so “our consciousness always goes beyond ourselves and grapples with what is not ourselves” (1936, p. 183). For Macmurray, the most tangible and complete expression of human nature is through friendship. Macmurray has a depth to his scholarly discussion on friendship; his Gifford lectures explore human interdependency and sociality and that a person’s life is most fully lived through meaningful friendships. However, what is being conveyed in this context is that human friendship is “that capacity to live in terms of the other, and so of what is not ourselves, to live in others and through others and for others, is the unique property of human beings” (pp. 183–184).

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There are some important outcomes that follow from Macmurray’s view on the human nature of existence and its nexus with human persons. First is the recognition that human nature has a material aspect to it and the basis to this is the appropriate place for law in our lives. A concentration on rules, regulations and laws is injudicious “because it thinks about human nature in terms, not of human nature, but of the nature of matter” (1936, p. 188). Second, our human nature surpasses our role as purely biological beings. If we were to live life according to this nature, it would mean living in a way that understands our lives simply as sharing a common humanity of being born, reared and living in societies despite their different characteristics. In Macmurray’s nature, “part of a community of social life, and the goodness of our individual lives depends upon our devoting them to the common good” (1936, p. 196). So our purpose becomes the “development of humanity”, and as individuals, our role is only to assist other persons and have particular and positive effect on our community and humanity. Ultimately, this dimension treats humanity as a means to an end; it reduces and makes persons subsidiary to organizations. Third and finally, authentic human nature is found through freedom, personal relationships and friendship. In freedom, a person thinks, feels and acts in accordance with his/her thoughts and feelings: “human freedom itself consists in the inner quality of a …[person’s] life” (Macmurray, 1936, p. 205). The addendum to this freedom is how it is manifested, in acting “of what is not ourselves”, that is, thinking, feeling and acting is concerned with the actual lives that other persons are living. Accordingly then, our personal interactions with other persons need to be genuine. This means a person must be able to honestly reveal his/her personal character to another person and to demonstrate goodwill towards him or her for their personal character and the wonder of his/her being. In friendship, there must be no insincere or feigned actions or unwarranted claims made. Macmurray then argues true human nature is “the reality of other persons, and of persons in personal relation with one another” (1936, p. 209). Macmurray has an understanding of the society in which he lives as he acknowledges the current limitations to friendships when he states “personal reality is a matter of degree” (1936, p. 210).

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Nonetheless, our role is to “make ourselves a little more real than we are” (1936, p. 210). Macmurray’s treatment of the different forms of nature and the purpose of their existence emphasizes and prioritizes human nature over the other forms (that is, material and living nature) which is, I propose, coherent with the central claim of personalism (Macmurray, 1935). For Buford (2014), this declaration might be a sufficient claim for personalism, for he suggests: “other than giving centrality to the person, personalism has no other set of principles or unified doctrine” (p. 1). Nonetheless, recall that I mentioned five principles that Williams and Olof Bengtsson (2018) suggest are indicative of personalism. It seems appropriate that I pick up on these themes and propose how Macmurray’s philosophy is congruent with them. The principles are: 1 . The interrelationship between human beings, animals and nature 2. The dignity of the person 3. Interiority and subjectivity 4. Self-determination 5. Relationality and communion (Williams & Bengtsson, 2014) The prior discussion of the nature and mode of existence demonstrates that Macmurray comprehends the interrelationship between human beings, animals and nature. While giving priority to the former, he argues: To say human life is personal is primarily to deny that human life is organic, or that it can be treated as differing from animal life only in degree and not in kind. It is to assert that the essence of human life is radically different from the essence of organic life, and that relations which constitute the totality of human life are radically different from those which make a unity of the organic world. (1938, p. 56)

In distinguishing the different natures, I propose Macmurray is arguing that we humans all belong to the same moral species regardless of our race, sex, physique, intelligence, creed or socio-economic status. In Macmurrian terms, “whether we like it or not, we are all enmeshed in that network of relation that binds us together to make up human

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society” (1935, p. 14). Humans are conscious, thinking, feeling and acting beings that attribute a value to other humans, animals and material goods. Macmurray wants persons to believe in their own personal and unique value and this intimate and exclusive importance applies to every person. In Persons in Relation (1961), he states “any personal activity must have a motive, and all motives are, in the large sense, emotional. Indeed an attitude of mind is simply an emotive state” (p. 31). For Macmurray then, human nature is social; it is revealed through the way we live and conduct our lives through personal relationships (Macmurray, 1961). He states, “there is only one proper ground of relationship between any two human beings, and that is of mutual friendship” (1935, p.  134). Macmurray argues that we need to move away from forms of human society that maintain a bond of unity that is negative or impersonal to a type grounded in positive personal relations which is best termed community (1961). In this model our human dignity will be realized since persons are recognized for their uniqueness and difference. Macmurray continually questions the belief that the self is an isolated and purely mental being: “any philosophy which takes its stand on the primacy of thought, which defines the Self as a Thinker, is committed formally to an extreme logical individualism” (1969, p. 71). This is a fundamental error for Macmurray because it does not adequately describe human nature. This is most clearly articulated in The Self as Agent (1969), the first part of his Gifford Lecture. Macmurray argues that the twofold emphasis of contemporary philosophers prioritizes persons as either thinking subjects (a mechanistic view) or rational subjects (an organic view). Macmurray does not deny these are aspects of human nature. Nonetheless, human beings are persons who act and live in relationships with other beings. He summarizes this thought clearly when he states, “the simplest expression that I can find for the thesis I have tried to maintain is this: All meaningful knowledge is for the sake of action, and all meaningful action for the sake of friendship” (1969, pp. 14–15). Macmurray believes to be free means being able to act without restrictions, that is, the action occurs from within our being. There is nothing new in this expression except that Macmurray explains that being free means “to express one’s nature in action” (1936, p. 170). I have already stated that, for Macmurray, human nature differs from other natures and his emphasis on friendship as the

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essential constituent of human nature. These forms of friendships are personal associations between  persons  who are free, that is, they offer and receive from each other something voluntarily and graciously. Accordingly, friendships mean persons act outside of their own personal interest. He states, “the personal is constituted by personal relatedness. The unit of the personal is not the ‘I’ but the ‘You and I’” (1969, p. 61). Finally, Macmurray’s philosophy epitomizes relationality and communion. Indeed, he names the second book of his Gifford lectures, Persons in Relation, which, as I suggest, acts as a culmination of his philosophical thought. He established his primary thesis on appointment to the Grote Chair of Philosophy and articulated it to the public through his radio lectures and, internationally, on his lecture tours. He argues that the infant from birth is a person because “the mother child relation is the original unit of personal existence” (1969, p. 61). This relationality permeates our entire life cycle because to be human is to live and be in relationship with other humans. He argues that “we need one another to be ourselves” (1969, p. 211). Macmurray views this form of need as a positive attribute of our humanity because it permits humans to express and realize their needs through friendship; this is the primary characteristic of human nature as persons. Macmurray proceeds to argue that the principles inherent in friendships need to be taken seriously and used to structure community. This contradicts the visions developed by Hobbes (2017) and Rousseau (1968). The relations of members in these structures are functional, utility and/or pleasure based. Alternatively, in Macmurray’s structure, the foundational relation “is a unity of persons as persons” (1969, p. 157) centred on reciprocal goodwill, while remaining distinct individuals equal to each other in their own humanity and “in communion with each other” (1969, p. 146).

2.3.1 Macmurray on Persons The notion of what characteristics are essential for personhood is contestable in philosophy with Macmurray (1961, 1969) and Kittay (1999, 2011) challenging Singer’s (1994) and McMahan’s (2002) theory of

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personhood. This manuscript does not offer a theory or solution to this debate. Rather it accepts Macmurray’s notion of a person qua person as first and foremost an agent who acts as valid, and readers are referred to his works for further exposition of his argument (Macmurray, 1961, 1969). It is therefore not the purpose of this manuscript to defend Macmurray’s notion. Instead, I seek to provide a better understanding of how persons living with the experience of an intellectual disability live lives of relational paucity compared to other persons in their societies. Briefly, Macmurray’s notion of a person qua person challenged the traditional concept of personhood held by his peers. He argued that the focus on thinking and reason is both “theoretical and egocentric” (1969, p. 11) since as a personal identity theory it understands a person as an abstract agent or being who lives and engages with the world as if this person were an object or separate and independent of being influenced by the events and other persons in the world. Thus, who we are as a person is strongly influenced by our family of origin, the environment in which we lived as a child and young person, our education, the culture in which we live, our friends and the other persons with whom we share our lives. Thinking is thus focused on the acquisition of knowledge and this is a type of withdrawal from participating in the living experiences of this world, which ultimately is an egocentric activity. Macmurray (1969) argues that our primary knowledge is derived from activities that are practical rather than those that are focused on theoretical purposes. Moreover, these forms of knowledge are characteristic of action which theoretical reflection also takes as its starting point. As all human beings participate in action, any human being is a person since “personal existence is constituted by the relation of persons” (1969, p. 12). Another of Macmurray’s key insights is in identifying two distinct and yet integral elements to human lives. It might seem obvious that our lives can be divided into two parts: functional and personal. The first aspect, functional, represents the realm of work (that is, paid employment) and the roles we occupy in society. In this domain, persons are related through a hierarchy and inequality permeates relationships. In addition, the relationships are bounded by order, duty and regulated by discipline and obedience. The second facet to human life is personal. Many persons regard others as of infinite value with personal interactions and

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engagement offering dignity, while a person’s ability, race, sex, culture is irrelevant (e.g., Kant, 1983). Both aspects of human lives are essential, and the research presented here will highlight how persons living with the experience of an intellectual disability are yet to fully participate in normative functional or social lives.

2.4 Julia Kristeva’s Theory of Disability There is no clear-cut argument on the nature of disability or indeed intellectual disability, since our understanding of disability qua disability evolves as research reveals new information and persons reveal more about their lived experiences. In thus proposing a theory of disability, I wanted to incorporate the two major paradigms that permeate intellectual disability despite the fact that both represent or are representative of a different set of assumptions. The clinical paradigm views intellectual disability as a condition that is essential to the person as measles or any other condition is essential to the person who has that illness. Intellectual disability originates at or before birth for most persons. The clinical paradigm provides a diagnosis of intellectual disability. The power of such a categorization can empower persons to be in control of the impact of their disability and live a flourishing life, especially if the person has associated health conditions. The social systems paradigm examines the influence the physical and social environment has on a person’s life. This paradigm draws upon the social sciences for its inspiration and importantly notes that a disability does not exist unless it has been formally labelled as such. The social system paradigm is useful in understating the negative label that has been ascribed to persons living with an intellectual disability, and approaches to understanding disability, both the social model of disability and social role valorization, have emanated from this paradigm. The approach I have chosen to use draws upon the clinical model, the social model and social role valorization; therefore, I explore Kristeva’s theory as a method of understanding why the current policies of inclusion have failed. This theory has synergy with the Nordic-­ Relational model that is premised on 3 theses: disability arises out of a disconnection between a person and his/her environment; disability

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always occurs within a specific context; and disability is comparative (Goodley, 2010; Tossebro, 2004). Kristeva offers an unusual approach to understanding how persons living without the experience of disability in western nations accept persons in the situation of disability. I use this term persons in the situation of disability deliberately here since this is the term that Kristeva uses (2010, 2013) to present her theory of disability and she appears to include all persons who are living with the experience of any form of disability. Kristeva argues that this term persons in the situation of disability (personnes en situation de handicap) may not be politically correct. However, it has the merit of reflecting disability as a limitation and how a person is assessed by society. Her view is that persons are judged with negativity. This experience is connected with neoliberal culture, which holds subtle and contradictory philosophical values that conflict with how persons living with an intellectual disability can lead flourishing lives. Kristeva’s background as a feminist scholar, a philosopher and psychoanalyst informs her theory of disability. She is also the mother of a man in the situation of a disability and drew attention to the living circumstances of persons living with an intellectual disability in France in the early 2000s, and she was the inaugural Chairperson of the National Council in France (Kristeva, 2013). As a philosopher, Kristeva aims to realign humanism to incorporate vulnerability as a critical characteristic of humanity (2010, 2013). The theory has been challenged by the use of psychoanalytic language, her emphasis on disability as tragedy and apparent essentialism challenges contemporary approaches to critical disability studies (Bunch, 2017; Grue, 2013). Nevertheless, Kristeva’s theory strikes a chord with how culture can aggravate persons living a flourishing life in the context of the neoliberal paradigm. Kristeva’s psychoanalytic approach understands the self as relational and interdependent through interaction theory. Interaction is a continual process. It is the recurring exchange of behaviours and ideas, where meaning is negotiated and borders are optimized or minimized. A possible limitation to this approach is Kristeva’s proposition that a person in the situation of disability and their family members encounter pain and exclusion that emanates from being a member of an ableist society (2010, p. 253, 256). Moreover, Kristeva claims that for persons, there are “two

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merciless worlds”: one of disability, with its suffering and its protective but also aggravating isolation; and the other, a society of performance, success, competition, pleasure and spectacle that “does not want to know” (2010, p. 261). This raw presentation is confrontational and appears to present disability as a negative. There are, however, some studies that might confirm Kristeva’s views of how persons in the situation of disability are treated (Douglas, 1998; Shapiro, 2018; Young, 1990). Moreover, Akrami, Ekehammar, Claesson, and Sonnannder’s (2006) research confirms that attitudes towards persons living with an intellectual disability are “closely related to other types of prejudicial beliefs” (p. 614). It could also be that Kristeva is locating disability in the individual psyche. If so, this is problematical; or, it could be that in articulating these views she is speaking from her personal perspective and her experience of how persons understand the nature of disability and accordingly her theory is designed to address these issues. Recall, as a parent she might have encountered this cultural attitude towards herself, her son and their family in their society. Indeed, her exegesis (2001, 2003, 2013) uses three case studies of persons who live across different societies to confirm her thesis on how imbued culture is with the idea of a disability as a tragedy. Interaction for Kristeva operates, in the model presented in the introduction, as an emancipatory concept. That is, it is designed to address, transform and drive personal, cultural and structural change. Neoliberal focus on perfection, consumption and productivity, more often than not, will establish impenetrable boundaries for persons living with an intellectual disability and thereby restrict such a person from securing valued social roles. A role refers to the collection of conventional and foreseeable traits associated with the particular position a person occupies rather than the personal characteristics of a person who holds that position. Wolfensberger’s (1983) research and social role valorization theory demonstrates that a person and his/her actions “[tend] to be profoundly affected by the role expectations placed upon [that person]” (Wolfensberger, 1972, pp. 15–16). Recall, Wolfensberger’s theory concentrates on enabling persons living with an intellectual disability to attain socially valued roles and create and sustain friendships with persons living without an intellectual disability. The more positive esteem in which a person is held, the more s/he conforms to these positive

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expectations. One such valued role is that of being an employee. We will consider in Chap. 3 the minimum participation rate of persons living with a disability in Australia, which implies that in this nation, few persons living with an intellectual disability are securing valued roles as employees and the associated benefits that these roles offer persons. Kristeva also argues through a psychoanalytic lens that the principles of liberty, equality and fraternity, which underpin her own western nation, and indeed many others, present a narcissistic identity wound style of humanism that excludes persons living with a disability. Kristeva argues: The disabled person opens a narcissist identity wound in the person who is not disabled; he [any person] inflicts a threat of physical or psychical death, fear of collapse, and, beyond that, the anxiety of seeing the very borders of the human species explode. (Kristeva and Herman, 2010, p. 251)

This attitude has prevailed over centuries and it has invaded our consciousness personally and culturally in the structures of western nation states. Kristeva commences with the New Testament reference in Matthew 25, which she refers to as “the work of charity” (2010, p. 256), and notes how persons living with all forms of disability were separated from other persons through the intervention of Christian monks, who considered these persons as a gift from God. Kristeva’s focus is on the perception of persons living with a disability following the Common Era (year 1 of the Gregorian calendar), which on the whole is consistent with other views (Striker, 1997) of persons holding less valued roles than peers in society. Grue (2017) raises an important qualification to Kristeva’s thesis, although her argument contests Kristeva’s exegesis of the Diderot and Saunderson relationship during the Enlightenment (pp.  51–54). Notwithstanding this debate and the possible inaccurate details that Kristeva uses, I propose that what is of the utmost concern and focus for her is the lack of attention and due recognition towards persons living with an intellectual disability as intrinsically or inherently valued social and political subjects in neoliberal societies. Her example of the lack of attention and care for the education of young persons in the situation of disability could be an example of her abhorrence at this lack of recognition (Kristeva and Herman (2010)). The life circumstances of persons

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living with disabilities may have undergone some material changes (e.g., welfare benefits, housing, public health programmes) with the introduction of state-sanctioned supports, yet nonetheless, disability as a concept preserves itself as a lack or deficit and out of synchronicity with rhetorical contemporary approaches (Kristeva and Herman, 2010, p. 259). Kristeva suggests that movements such as Etats Generaux du Handicap (2005) in France and Every Australian Counts in Australia (2008), Enabling Good Lives in New Zealand (Office for Disability, 2018) are supporting a positive ideology towards persons living with a disability (2013, p.  220). These initiatives are appropriately viewed as nation-based policy that could influence the real lives of persons living with an intellectual disability. The initiatives will only become meaningful if considerate and strategic actions are actualized. The notion of a person, any person, as vulnerable, creative and different to other persons is repressed and contributes to developing structures of ableism in western nations (Kristeva and Herman 2010, p. 259). Her view is that a focus on “integration”—I would also argue this applies to social inclusion—“smacks of charity to those who would not have the same rights as others” (Kristeva, 2013, p.  224). However, interaction “expresses a politics that has become ethics, in expanding the political pact as far as the boundaries of life” (Kristeva, 2013, p. 224). In summary then, approaches to inclusion within neoliberal contexts fail since “they do not change the ways a culture thinks of embodiment, nor do they sufficiently intervene in systems of value and devaluation that makes different bodies” (Bunch, 2017, p. 136). Kristeva’s solution presents a disability of positive ontology that posits diversity as a solution to the inherent dilemmas in neoliberal societies. Kristeva’s positive ontology and the structure of her disability theory are underpinned by her theory of semiotics and her theory of the speaking subject. The term parlêtre is usually translated as speaking subject (Bunch, 2017, p. 137) and Kristeva uses this expression to conceive of persons (subjects) as both in process and in relation with others. Kristeva uses the theory of semiotics to her advantage and posits the parlêtre as of unique human form and shape and one who acts as a person-in-relation in community. Kristeva may consciously or unconsciously draw upon the philosophy of personalism and in particular the Scottish philosopher, Macmurray, who

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expresses the notion of a person as a human who is in direct relation to another person, “persons, therefore, are constituted by their mutual relations to one another, therefore any ‘I’ exist only as one element in the complex ‘You and I’” (Macmurray, 1961, p. 24). A person then discovers his/her own being through encounters with another person since interaction is a continual reflective process. Although Kristeva fails to articulate whether she understands a person living with an intellectual disability (or any other form of disability) as a speaking subject, it’s possible to argue that this is implied in her argument. If Kristeva’s interaction theory is a criticism of neoliberalism, her speaking subjects need to engage with each other through a variety of communication mediums that focus on psychic features that incorporate dissimilarity as a socially transformative potency. Kristeva argues the narcissist identity wound that persons living without an intellectual disability experience in their encounter with persons living with disabilities is an immature response. The term narcissist identity wound emerges from Freud, and Kristeva suggests that a person living with any form of disability per se, “opens a narcissist identity wound in the person who is not disabled” since the former person “inflicts a threat of physical or psychical death, fear of collapse, and, beyond that the anxiety of seeing the very borders of the human species explode” (2010, p. 251). In other words, when many persons will not want to engage with persons living with the experience of any form of disability since not only this might challenge personal communication skills, it may also trigger emotional negative responses that cause personal anxiety or fear. Indeed, the perception of cognitive and physical differences may also arouse questions about the nature of our own personal humanity and fears about personal safety. These propositions by Kristeva emanate from the psychoanalytic corpus (Klein, 1997; Sandler, Spector Person, & Fonagy, 2012) and she intelligibly argues that the root cause of the narcissist identity wound anxiety is caused by the current view of a human person in western neoliberal states. This approach echoes Gillman (1988), who argues that persons typically try to remove any image we have that might represent a fear of our own personal demise and locate it in another person— “the fear we have of our own collapse does not remain internalized…rather we project it onto the world” (p.  1). It is important to articulate, for

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Kristeva, the encounter is not the causal link of the narcissist identity wound; rather the personal reaction of a person is a dormant response to contemporary humanism. This view of humanism is unable to conceive of the human person as vulnerable, creative, different and persons-in-­ relation to other persons and their environment. Its focus is on persons as individuals and independent. The strategy Kristeva asserts to challenge and resolve the narcissist identity wound is revealed through psychoanalytic listening. If a person embraces this way of living then s/he will develop a positive and genuine sense of his/her own self, welcome his/her personal human vulnerability and find new meanings in his/her lived realities. Psychoanalytic listening, for Kristeva, is an answer since it offers an “unconscious latent meaning hidden beneath the surface of words, dreams or behaviours” (Bunch, 2017, p.  140). Psychoanalytic listening is a methodology of practices of being attentive to our own personal unconscious actions that impact or collaborate with our civic engagements. Therefore, the purpose of psychoanalytic listening is to discover the concealed meaning embedded in the immature and repulsive response to impairment. Impairment, according to the International Classification of Intellectual Disability and Handicap, can be defined as “any loss or abnormality of physiological, psychological or anatomical structure or function” (World Health Organization, 1993, p.  27). Accordingly, if a person knows his/her personal limits and prioritizes personal interactions, then it is possible to overcome the prejudice of vulnerability and envisage a person living with an intellectual disability as singular and valuable. Incorporating a development approach, then, reveals a positive ontology of disability. A development approach here is taken as the systematic changes that occur in persons and can be ordered structurally and take many forms that include physical development (growth and ageing); cognitive development (language, skills) and psychosocial development (motives, emotions) (Sigelman & Shaffer, 1991, pp. 2–3). Kristeva uses the term vulnerability (“vulnérabilité”) in lieu of impairment (déficience) to confront the notion of essentialism. Essentialism has three philosophical interpretations and in this context refers to Aristotle’s metaphysics, which maintains that a certain entity (a person or thing), irrespective of narratives, has an essence. That is, each entity has a property or properties that must be present in the entity as it cannot exist or

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be defined as the object without this attribute (Aristotle, trans. Ross, 2001). This perspective has the disadvantage of failing to absolutely move beyond the deficit model of disability. Nevertheless, Kristeva’s approach has symmetry with other feminist scholars, (e.g., Garland-Thomson, 2012; Tremain, 2002, 2005). Accordingly, the term vulnerability may strike a negative chord with persons since it can represent disability as a deficiency and can be used as a possible rationale for limiting the economic, social, relational and political participation of persons living with an intellectual disability. Nonetheless, research in critical disability studies embraces vulnerability as one dimension of the entire human condition instead of focusing on vulnerability as negative representation of a human person. Positing vulnerability as a deficiency could be argued, as Kristeva (2010) demonstrates, as a more historically recent approach to understanding the human person that has roots in the Enlightenment epoch. When persons “find[s] our limits” we “have the ability to share”, that is, “to take part in a distinctiveness beyond the separation imposed on us by fates, to participate, without erasing the fact that each is “apart” and recognizing that part that cannot be shared that is irremediably” (2010, p. 265). This discovery of our shared vulnerability holds open the possibility of personal transformation, or in continental philosophy language, emancipation. Kristeva’s argument that we are all vulnerable also creates spaces and potential for a mutual interaction that offers each person in the encounter the possibility to develop and live more fully as a human person. We meet each other in the emotional and social sphere rather than as rational agents. Indeed, this may even contribute to personal flourishing. This is the interpretation Bunch (2017) reads on Kristeva’s comments, “in this encounter, could the disabled person become not my analysis by my analyzer” (Kristeva, 2010, p. 266). This reading understands human persons as heterogeneous, which embraces and welcomes diversity as both essential and creative dimensions of humanity. In the personal sphere, vulnerability can liberate our narcissist identity wound in a way that we can conceive of new modes of being in our world and create a new humanism (Kristeva, 2010, p.  266). A person comprehends his/her vulnerability and this finitude is integral to all human persons.

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Incorporating vulnerability as an essential referential feature of persons can be aggregated to the political realm. In this sphere, if disability is a positive ontology and a singularity, then its value and distinctiveness are intrinsically valuable since it is something that is shared by our common humanity. Interaction also permits a critique of social inclusion as a policy of neoliberalism that fails to target the personal, cultural and structural spheres and orientates structures processes that understand the personal nature and circumstances of each person who needs to use the system. This singularity challenges orthodox approaches that aim at one-fix solutions. This argument confirms Thompson’s (2003) findings from the personal (P), cultural (C) and structural (S) spheres. Therefore, interaction aims at influencing individual persons, the cultural myths that inhibit persons, both those who hold the myths and those subject to them. Interaction also aims to emancipate the society we live in and offer all persons personal dignity, wellbeing and fullness of life.

2.4.1 Kristeva’s Nexus with Inclusion Changes have emerged in both the macro and micro disability cultural landscape following the advent of alternative models of support and the active pursuit of social policies of inclusion in western nations. These changes include: an energetic disability movement; community living programs instead of institutionalized living arrangements; individual resourcing to respond to persons; a type of group and community advocacy, parent advocacy and self-advocacy movements; legislative reforms; a disability corpus and academic disability studies programs in many tertiary institutions. These constitutional, legal and resourcing shifts are radical and possibly were unimaginable a century ago. Nonetheless, implementation ambiguity continues to exist in the personal sphere. Researchers have discovered there is still relational paucity between persons living with and living without an intellectual disability (Bigby, Anderson, & Cameron, 2017; Edgerton, 1993; Verdonschot, deWhitte, Reichrath, Buntinx, & Curfis, 2009). Sadly, this statement maintains currency today as we approach 2020 (e.g., Shapiro, 2018), and I propose, the reason the old attitudes still exist, for most persons living without an

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intellectual disability, follows from how neoliberal culture interacts that maintains the hegemony of the dominant ideology that fails to confront personal fears. Thus, these attitudes also perpetuate a culture of economic, social and politically devalued roles for persons living with an intellectual disability. In addition to devalued roles, persons (as we will discover) also have few if any independent friendships outside of paid support or family networks, which increases their personal vulnerability. Pratt (1998) is insightful in highlighting, based on her findings, that, “no matter where you [live] the more people who know you and care about you, the safer you are. We found that caring relationships are central to safety and to people’s satisfaction their own lives” (p. 8). This is great for persons who live relationally rich lives, but for most persons living with an intellectual disability, persons live relationally deprived lives. Kristeva’s approach to incorporating vulnerability as a central feature of humanism has merit. It advances the notion that all persons are of equal value: we all have physical, physiological and emotional limitations; we can also recognize that we are different, and are an embodied being. Her analysis of vulnerability and its interaction with culture also offers a hypothesis on the limits imposed by neoliberal frameworks and how it then fails to recognize persons living with an intellectual disability as equal citizens in western societies. This failure results in failing to incorporate persons living with the experience of an intellectual disability in societal structures and persons living on the social margins of their societies. Kristeva’s argument can be read as a call to remove these injustices in our cultures that, albeit unconsciously, reveal intellectual disability as a deficit or lack and thus promote this notion of deficient as negative imagery towards persons living with an intellectual disability. In the neoliberal cultural realm, what emanates are “everyday practices of a well-­ intentioned liberal society” (Young, 1990, p. 41) that contribute to the disadvantage and systemic constraints that persons living with an intellectual disability experience in their daily lives. Thus, for Thompson (2003) personal, cultural and structural sphere actions and practices are embedded and retain a status that resists criticism. Goffman (1991) and Wolfensberger (1975, 1983) demonstrate how persons living with an intellectual disability hold a marginal status compared to other persons in western societies. Marginal persons can be referred to as persons “the system of labor will not use” (Young, 1990,

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p. 53) and in the next chapter (Sect. 2.4), we will note the rates of underemployment of persons living with an intellectual disability in one neoliberal society. It is important to acknowledge that some persons are in employment although the occupations are semi-skilled, and as Young (1990) notes, persons located in this domain may continue to be marginalized since their low income and ability to compete in a technical society reinforces material deprivation and cultural elitist attitudes based on technical competency. Without meaningful employment or activities, persons will experience boredom, a sense of uselessness, low self-esteem and respect, and may be judged as a burden on the taxation system. Or as we have discussed, persons who live on the margins, after all, are effectively excluded from social and political participation in society. In Kristeva’ (2013) And Kristeva and Herman (2010)  case studies and examples of these practices, for instance, her response after viewing the documentary about “John”, she experienced an “immense sadness”. In her view, she had “witnessed a process… and a commercial transaction but not an interaction” (Kristeva, 2013, p. 222, italics in original) between persons living with and persons living without an intellectual disability. A further effect for persons living with an intellectual disability stifled by the dominant culture is being rendered powerless. In this instance, persons are rendered powerless by being perceived as lacking in personal knowledge and authority and/or having their view being listened to as a person. Kristeva’s case study about “John” (e.g., 2010, p.  253) clearly articulates this notion and judgment of a person living with an intellectual disability as not having epistemic authority about their self. The documentary demonstrates that even though “John” and his life are the subject matter, his voice was not present, and whilst it is possible that (a) “John” could not speak, or (b) no person thought of engaging him in dialogue or (c) “John” discovered his voice after the movie, “John’s” integrity is nonetheless diminished (Kristeva and Herman, 2010, pp. 252–253). Disrespecting this aspect of a person most significantly reduces the inherent respect and human dignity of a person qua person and fails to capture the fundamental essence to the neoliberal civic and legal topography. A critical form of respect for any person is through listening: to be listened to, to receive a reply, to have your requests met, to contribute to dialogues. Listening creates paths of meaningful engagements with other persons. A possible explanation of how this powerlessness occurs could be

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rooted in how persons living with an intellectual disability are embraced as children and young persons. For instance, many young persons with an intellectual disability do not complete secondary education (Kristeva, 2010) and accordingly, if persons do complete their education, how many persons transition to tertiary or technical education programs or remunerated work placements? Moreover, the limited participation rates in social and relational spheres may also contribute to dismantled opportunities and spaces where persons with and persons without an intellectual disability can engage in meaningful interactions. Finally, the cultural norms of neoliberalism are so pervasive that not only do they signify the person living with an intellectual disability as different and other, the norms render persons invisible to normative social networks in societies. Neoliberal emphasis on beauty, achievement and consumption sets the norms for communication systems, values, goals and practices that develop as representative, which then authorize and value the notion of humanity. Kristeva’s thesis of vulnerability and disability as a positive ontology contradicts the former view.

2.5 M  acmurray and Kristeva’s Nexus with Disability It is a truism to state that we live in an increasingly global, mobile and stratified society that is economically dominated by multinational corporations whose telos is to pursue the acquisition of private property and profit. Telos in philosophy refers to the inherent purpose of each thing, which is the ultimate rationale or purpose for the things of existence. Importantly, as Chap. 4 will demonstrate, the character of corporations relies on a set of inherent tenets concerning human nature. This paradigm understands all human behaviour as dominated by the personal self-interest of persons who are rational utility maximizers and who form contractual or agreed relationships that define the nature and scope of their relationships. The accelerated growth of corporations and their success in achieving their purpose has provided western liberal-democratic governments with a power and authority to focus on what might be

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viewed as a public good (e.g., education or human services) in market-­ based systems. In Australia, the National Disability Insurance Scheme (NDIS), as one human service located in a market-based scheme, will be analysed. This typology stands in stark contrast to the Macmurray view of human nature. His schema argues that in approaching a topic (e.g., education, human services), we take the position that humans are socially responsible persons who act outside of themselves and are immersed within a community of other persons. This form of the personal offers two distinct characteristics. First, it offers society a positive vision of humanity. It suggests an explanation for our personal discomfort and anguish which emanate from the limitations that persons experience in their personal relationships. However, this experience of anguish does not have to overwhelm us. Its optimism is in suggesting we engage in outward focused, interdependent relationships with mutual goodwill that stimulates another’s personal flourishing. Second, it acknowledges that persons have many different and changing traits and relations, which are continually in a state of flux, that change and respond to personal and structural dynamics. This is particularly necessary for human services as their first concern is with human persons. As systems, they function as essential constituents for achieving individual well-being and maximizing personal quality of life. The disability services sector is one component of the human service system and includes the provision of bodily, structural or social support activities to persons who are unable to manage the daily tasks of living. Many persons will have received a disability support service and most persons will have experienced a human service as they live through the typical chronological trajectory. What might be judged as a common aspiration for a person as s/he lives the natural stages of his/her life? A 75-year-study, conducted by Harvard University, traced the lives of 724 persons (men only) in the USA to understand how they perceived “a good life” at specific intervals in their lives. The crucial lessons learned from these persons about their lives and what promotes Personal happiness is

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( a) social connections are really good for us, loneliness kills; (b) loneliness is toxic and contributes to reduced personal happiness, poor physical health conditions in mid-life, an earlier decline in brain function and shorter life expectancy and (c) good relationships as well as a protecting the body also protect our brain (Waldinger, 2015). Shotter (1996) offers an important note of limitation in suggesting that Macmurray’s account of the logical forms is ideals rather than “practical details” (p.  15) that can guide our actions. Indeed, Macmurray might agree as he states his thesis is a “pioneering venture” (1996, p. 13) and his intention is “to construct and to illustrate in application the form of the personal” (1996, p.  13). Accordingly, his thesis is aimed at our higher level of consciousness and it needs to have this focus because of the continued dominance of the mechanical and organic modes of existence. Nonetheless, I propose that it is possible to extract a set of practical principles from Macmurray that can realize his form of the personal. These principles, which I have also argued elsewhere (Treanor, 2014), are: 1. All persons, regardless of creed, gender, limitations, race or sexual orientation are important and valuable in their own right and are to be respected. 2. The greatest personal tragedy for a person is to experience the contempt of another person[s] that has the effect of dominating and/or repressing his or her human flourishing. 3. If we are serious about enabling all persons to live life in such a way as to flourish, then at some time, or in the future, all persons will need each other and in this way persons can recognize each other as being interdependent; and 4. This need for each other creates a vulnerability and interdependency that holds open the opportunity for a personal transformation from a preoccupation with personal power and holding roles to simply being in relationship with persons and having fun. This transformation creates us as persons in mutual relationships that are sensitive to and aware of each other’s interest and need to flourish as well as our vulnerabilities. If these principles were to be implemented in

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education and human services, they hold the potential to act as the formative glue to permeate the culture, processes, practices and relationships in these systems. The principles establish a shared meaning and a set of ideas with three significant practice implications for persons at the societal, institutional and in the individual spheres. In the macro or societal sphere, we would expect to find a society that legislates inclusively; that is, all persons have full rights to citizenship and appropriate supports to participate as a citizen, avenues to legal and civil recourse in any event or incidences of discrimination and participatory mechanisms to have their voice heard. However, this does not always occur, for example Sooreniam’s (2019) study reveals that in the United Kingdom, hate speech is often denied and if reported remains either ignored or not taken as a serious crime. This denies the protection offered to persons living with the experience of an intellectual disability under the Criminal Justice and Public Act 1994. Similar to Kristeva and Herman (2010), Reinders (2000) is sharply perceptive about how we generally interact with persons living with an intellectual disability when he argues that societies need policies, processes and mechanisms that “sustain adequate support for [persons living with an intellectual disability] and their families to the extent that its citizens are the kind of person[s] who are prepared to share their lives with them and who have the character to do so” (pp. x–xi). Macmurray puts it, “abnormality consists in [the individual’s] inability to enter into normal personal relations with others” (1969, p.  36). Macmurray also suggests that “any human society is a unity of persons” (1969, p. 127). In other words, his vision gives persons a place to belong. How we feel we belong somewhere, to other persons, a neighbourhood or society transcends legal, professional or formalized process, roles and physical presence. We feel we belong somewhere when the persons with whom we share society with are persons who create and build places where we can encounter each other and with who we can build positive relationships that are I-You rather than I-It relations. Ultimately, these principles are visionary and concerned with structuring and enabling society to focus on honouring and valuing all persons regardless of their status or capabilities. In the institutional sphere, educational and human service agencies will have a robust form of governance that promotes their culture, processes, rules and regulations as essential means to serving the need of persons to be in mutual relationships that offer each person meaning and

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connection with the local and wider community. The primary focus of the agency will also enable maximum personal flourishing. Macmurray states: Friendship, fellowship, communion, love, are all one way or another liable to convey a false or partial meaning. But what is common to them all is the idea of a relationship between us which has no purpose beyond itself; in which we associate because it is natural for human beings to share their experience, to understand one another, to find joy and satisfaction in living together; in expressing and revealing themselves to one another. (1935, p. 98)

Indeed, the focus will also include: first, how do the activities contribute to human flourishing? Second, the means used need to extend the care of humanity and personal flourishing rather than being merely an exchange. Third, the persons who work in the system need to be valued in their being and be persons who are focused on human development and emotional education outcomes of the persons they serve. At the level of the individual sphere, Macmurray wants persons to be in touch with their emotions because this will determine the quality of their personal life. He argues that “feelings can be rational or irrational in precisely the same way as thought, through the correctness or incorrectness of their reference to reality” (1935, p.  25). MacAllister and Thorburn (2014) provide an excellent analysis to Macmurray’s account of the emotions and the benefits of shared educational pursuits when carried out for the intrinsic pleasure they offer rather than any utility. This argument can be extended to persons engaged in human services who are motivated by the goals of education, human development, enabling well-being and appropriate personal interactions rather than employment for the sake of employment. MacAllister and Thorburn offer meaning to Macmurray’s idiom: What we feel and how we feel is far more important than what we think and how we think …because… the emotional life…is the core and essence of human life … and …its value lies in itself, not in anything beyond it which it is a means of achieving. (1935, p. 146)

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Macmurray does place value on our intellect, although he believes that “our civilization is heavily biased in favour of the intellect against the emotions” (1935, p.  44). The Macmurrian argument is that to act in freedom with our emotions is not exclusive of our intellect nor is it unrestrained realization of desires. Rather: The freedom of our emotional life is to be achieved only on the same conditions: that we set out to discover, through feeling, the real values of the world and of our life in the world. We shall have to submit to the discipline of our feelings, not be authority of tradition, but by life itself. It will not guarantee us security or pleasure or happiness or comfort; but it will give us what is more worth having, a slow gradual realization of the goodness of the world and of living in it. (1935, p. 53)

2.6 Conclusion This chapter has outlined the philosophy of personalism as detailed by John Macmurray. It also presented Julia Kristeva’s (2006, 2010, 2013) theory of disability, which offers a radical way of thinking and reorienting our approach—“a cultural revolution”—and new ways to create hospitable spaces for persons living with an intellectual disability. As a countervailing theory of disability, it is both dynamic and transformative. It posits interaction (Kristeva, 2006, 2010, 2013) as a key premise and an alternative approach to broaden the minimum standards reached by inclusion in the global sphere. Interaction transcends professional processes, social roles and the physical spaces that persons occupy, since these may create or build places of encounter. It also explores the relationship of John Macmurray’s philosophy of personalism in three parts and offers possible ways of understanding and applying his philosophical insight to advance Kristeva’s positive ontology of disability.

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Macmurray, J. (1935). Reason and emotion. London: Faber & Faber. Macmurray, J. (1936). Freedom in the modern world. London: Faber & Faber. Macmurray, J. (1938). The clue to history. London: Student Christian Movement Press. Macmurray, J. (1961). Persons in relation. London: Faber & Faber. Macmurray, J. (1969). The self as agent. London: Faber & Faber. Marcel, G. (1936). La Dard. Paris: Plon. Marcel, G. (1963). The existential background of human dignity. Cambridge, MA: Harvard University Press. McMahan, J. (2002). The ethics of killing: Problems at the margin of life. New York: Oxford University Press. Mortensen, J. N. (2014). The common good. Denmark: Boedal Publishing. Mosteller, S. (1978). Living with. In J.  Vanier (Ed.), The challenge of L’Arche (pp. 11–24). London: Darton, Longman & Todd. Mounier, E. (1938). A personalist manifesto (Monks of the St. John’s Abbey, Trans.). New York: Longmans, Green & Co. Mounier, E. (1952). Personalism. Trans. P. Mairead. Notre Dame, IN: University of Notre Dame Press. Office for Disability. (2018). Issues, NZ strategy. Retrieved from http://www. odi.govt.nz/nz-disability-strategy/ Olof Bengtsson, J. (2006). The worldview of personalism: Origins and early development. Oxford: Oxford University Press. Pfeiffer, D. (2005). The conceptualisation of disability. In G.  L. May & M. B. Raske (Eds.), Ending disability discrimination: Strategies for social workers (pp. 25–44). Boston, MA: Pearson Education Co. Pratt, J. (1998). Introduction. In J. Pratt (Ed.), On the outside: A look at two decades of deinstitutionalisation through the eyes of people with developmental disabilities (pp.  1–9). Charleston: West Virginia Developmental Disability Planning Council. Reinders, H.  S. (2000). The future of the disabled in liberal society: An ethical analysis. Notre Dame, IN: University of Notre Dame Press. Reinders, H. S. (2008). Receiving the gift of friendship: Profound disability, theological anthropology, and ethics. Grand Rapids, MI: Wm. B. Eerdmans. Rousseau, J. J. (1968). The social contract (M. Cranston, Trans.). London: Penguin. Saint-Jacques, M., Turcotte, D., & Pouliot, E. (2009). Adopting a strengths perspective in social work practice with families in difficulty: From theory to practice. Family & Society, 90, 454–461. https://doi.org/10.1606/ 1044-3894,3926 Sandler, J., Spector Person, E., & Fonagy, P. (2012). On Freud’s “On narcissism: An introduction”. London: Karnak Books.

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Sartre, J. P. (1966). Being and nothingness. New York: Pocket Books. Shapiro, T. (2018). The sexual assault epidemic no one talks about. Broadcast on National Public Radio and available at: https://www.npr. org/2018/01/08/570224090/the-sexual-assault-epidemic-no-onetalks-about. Shotter, J. (1996). Psychology as a moral science of action: Macmurray and the turn of the relational. Originally written in 1996 for H.  A. Carson (Ed.), Persons and agents in relationship: Essays on John Macmurray’s contribution to a post modern thought. New  York: Humanities Press. Retrieved August 28, 2014, from http://pubpages.unh.edu/~jds/Macmurray.htm. Sigelman, C., & Shaffer, D. (1991). Life-span human development. Belmont, CA: Wadsworth Inc. Singer, P. (1994). Rethinking life and death: The collapse of our traditional ethics. New York: St Martin’s Press. Smith, S. (2017). Beyond realism: Seeking the divine other: A study in applied metaphysics. Delaware, IL: Vernon Press. Sooreniam, A. (2019). Disability hate speech. In M.  Sherry, T.  Olson, & J. S. Vedeler (Eds.), Disability hate speech: Social, cultural and political contexts (pp. 89–102). New York: Routledge. Striker, H. (1997). A history of disability (W. Sayers, Trans.). Anne Arbour: University of Michigan Press. Sulmasy, D. P. (2013). The varieties of human dignity: A logical and conceptual analysis. Medicine, Health Care and Philosophy, 16(4), 937–944. https://doi. org/10.1007/s11019-012-9400-1 Thompson, N. (2003). Promoting equality, challenging discrimination and oppression in the human services. London: Palgrave Macmillan. Tossebro, J. (2004). Policy evaluation and national surveys of the living conditions of people with intellectual disabilities in Norway. Journal of Intellectual Disability Research, 48, 486. Treanor, D. (2014). Disability, critical thinking and personalism. Appraisal, 10(2), 1–15. Tremain, S. (2002). On the subject of impairment. In M.  Crocker & T.  Shakespeare (Eds.), Disability/postmodernity: Embodying political theory (pp. 32–47). London: Continuum. Tremain, S. (2005). Foucault, governmentality and critical disability theory: An introduction. In S. Tremain (Ed.), Foucault and the government of disability (pp. 9–27). Ann Arbor: University of Michigan Press. Vanier, J. (1998). Becoming human. Toronto, Canada: House of Anansi Press.

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3 Social Inclusion: Invading Consciousness

3.1 Introduction The focus of this chapter is persons living with an intellectual disability as they continue to remain socially excluded from their communities in western societies. A possible explanation for this phenomenon occurs when persons living without an intellectual disability encounter persons who live with an intellectual disability and how the former’s personal, latent, preconceived notions dominate their ability to act freely. The term ostracized other: social pariah other is, I propose, a more accurate way of describing persons living circumstances in western societies. Carling-­ Jenkins (2014) presents a four-category critique which positions “[persons living with an intellectual] disability as other” across domains such as citizenship, segregation within institutions, living on the margins and the disabled body (p. 4). The author notes that this risks understanding disability “in binary terms” (p. 4) although it has the advantage of understanding how persons living with an intellectual disability actually live their lives and how policies and society form to shape, positively and negatively, the personal lives of persons living with an intellectual disability. Carling-Jones’ (2014) argument presents how Australians living with © The Author(s) 2020 D. P. Treanor, Intellectual Disability and Social Policies of Inclusion, https://doi.org/10.1007/978-981-13-7056-4_3

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an intellectual disability are positioned in roles that reinforce disability as a negative characteristic and which fail to use contemporary knowledge to create spaces inclusively. DeJong (1979) has explored the independent living movement in the United States and compared it to five other social movements: civil rights, consumerism, self-help, de-medicalization and deinstitutionalization. This notion of a person being defined by his/her limitations is by no means new; for example, Adrianne Asch argues that disability is not part of her “lived experience”, rather it is the basis on which she is judged as a person (1976, p. 28). There are, however, two domains that are not addressed in this typology, the first could be termed economically excluded: emphasizing disability and the second ostracized other: social pariah other. These aspects of persons living with an intellectual disability lives are presented in the Sects. 3.4 and 3.5 in this chapter.

3.2 Freedom from Judgements What occurs for us when we first meet a person living with an intellectual disability? Studies by Allport (1954) and Goffman (1963) suggest that an interaction with a person living with a disability evokes uncomfortableness in a person living without a disability. It is also Kristeva and Herman’s argument (2010). There are a myriad of circumstances where we might initially encounter a person: through childbirth, through meeting a sibling or family relation, through a friendship, through employment or maybe through a meeting in the wider community. When an infant is born, s/he is without a specific identity and as the identity develops it is connected to other persons, culture and ideas that s/he is exposed to in his/her immediate community and through his/her lived social and emotional experiences of the world. The influence our families have upon us, the society in which we live, the values and culture inherent in these structures and the person with whom we choose to share our lives also exercise considerable influence on our values (Mansfield, 2000). Moreover, personal interactions and experience, either positive or negative, have a significant impact upon self-esteem. The school of psychoanalysis known as object-relations provides one relevant lens to examine human development since it is especially tuned into exploring how a

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person experiences him/herself as an autonomous being with a corresponding need for a profound attachment to other persons (Klein, 1997; Winnicott, 1987). As noted in the previous chapter, there are a number of other theoretical explanations that seek to demonstrate how a person and institutions act in society and the explanation that occupies this book is the philosophy of personalism (Browne, 1908; Gibson, 1932;  Griffiths, 2016, Knudson, 1927; Macmurray, 1961, 1969; MacIntyre, 2001,  Maritain, 1947, 1985; Mounier, 1938, 1952), which is compatible with the object-­ relations school of psychology and psychotherapy. In addition, the work of Julia Kristeva (2006, 2013), Kristeva and Herman (2010) and Kristeva and Vanier (2011) also serves to complement this explanation. A crucial thought to this approach is the notion of a person having personal freedom; that is, as persons we have the capacity to freely choose how we act. Victor Frankl (1961) notes “between stimulus and response there is a space. In that space is our freedom and power to choose our response. In our response lies our growth and our freedom” (p. 122). Frankl’s “space” offers a good insight into how, in the majority of cases, our personal response is to judge the child or adult living with an intellectual disability as different to other children or adults we know and this can result in making serious errors of judgement. Is the judgement of the person being judged (or other) emanating from the differences or strangeness we feel from our encounter? Can it be that it comes from our inability and/or lack of knowledge and experience in knowing how to communicate and/ or act? Indeed, can it come from an inner fear of our own vulnerability that haunts and repudiates us that we then project onto others? Moreover, is it a combination of these or a different set of factors? In the extreme, our response might fulfil Allport’s (1954) definition of prejudice, “an antipathy based on faulty and inflexible generalizations … directed towards a group or an individual of that group” (p. 9). Therefore, we may, albeit unconsciously, choose a response that prohibits our personal growth and freedom. If our response is proceeding from one of these spaces then it is at best a social and/or emotional reservation, or, in the opposite extreme, a negative and stigmatizing judgement. Extreme responses in judging other persons, at either positive or negative ends of a continuum, are unhelpful in guiding social behaviour.

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In the social sphere, Toronto (1993) notes how easily the desire to respond to the needs of a person can morph into paternalism when we fail to listen to the others’ need. This can occur for persons living with an intellectual disability in particular. An emotional response might include judging a person as “broken” and “incomplete”, a particularly pugnacious response for disability scholars (Burghardt, 2016; Hubert, 2000; Hughes, 2009). This negative response can also be directed to other persons. For instance, Blackhouse’s (1999) studies of racism in Canada exposes the role law played in class actions in creating and moulding the definition of race and the subsequent negative impact that flowed to racial typecasting and subjugation. This research demonstrates how easily entrenched racism permeated institutional and social structures, negatively impacting on the lives of First Nation, Inuit, Chinese-Canadian and African-­ Canadian persons. A more balanced response may be to accept that: The reason why any strong emotional excitement tends to make us act wildly and ‘irrationally’ is not that emotion is ‘irrational’ or ‘non-rational’ but simply that by invading consciousness [emphasis added] it distracts our attention from the situation in which we must act and turns inwards upon our state of mind. (Macmurray, 1961, p. 68)

Thus, if we assess our response as an emotional reaction that is acting on our reason and invading our consciousness—that is, our lived experiences, our culture, personal fears and knowledge, or lack thereof, of intellectual disability—we may find that we are paying insufficient attention to the situation in which we live and, moreover, we are not living or acting freely from unfiltered states in our mind. Rather, we have been formed by and fully absorbed the socialization processes that have been transmitted to us from our society. Altering this state of mind holds open greater possibilities for our, other persons’ and societies’ growth and freedom, that is emancipation. We will also be acting freely in Macmurrian terms (Macmurray, 1961).

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3.3 Invading Consciousness Macmurray (1961) uses this term invading consciousness in a chapter titled “The Discriminating of the Other” in the second book based on his Gifford lectures. It is part of his paradigm “the form of the personal” that prioritizes action over thinking, persons and persons-in-relation. His thesis offers a philosophical solution to the practical problem of our failing to treat other human beings as persons, and this phrase in particular offers an interpretation of why persons act in this way. It proposes that we can act in an illogical or unreasonable manner when we become aware, either through choice or unexpectedly, of other persons in our personal and/or social spaces that distract us and incline us to think of ourselves rather than these other persons. This is a fearful reaction that as a “negatively motivated action is “egocentric” and a more positive action is one “which has its centre of reference outside oneself ” (1961, p. 71). Therefore, Macmurray’s perspective argues that what is most liberating for persons is to give of their self to the other in mutual ways of knowing. I use the expression because this is also what I perceive has occurred towards one group of persons. Persons living with an intellectual disability are increasingly part of western nations’ geographical landscapes; though as persons, they are outnumbered numerically by persons living without an intellectual disability. Yet it is my experience that persons living with an intellectual disability, on the whole, are persons who desire and are willing to engage in personal interactions with persons living without an intellectual disability. Governments have given of themselves in the provision of funding, legislation and a myriad of social policies, which have admirable goals. Nonetheless, what has failed to occur is the implementation of effective education programs targeted at social relations between all persons. The latter are of enormous consequence for human development. The flourishing and well-being of our relationships require emotional expertise and competency. The result, however, has seen persons living with an intellectual disability being ostracized from normative rhythms of life enjoyed by persons living without an intellectual disability. In Northern Europe following the Second World War, the process of deinstitutionalization commenced for persons living with an intellectual

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disability. This might be judged as offering, or resulting, in personal growth and freedom for persons. These acts of deinstitutionalization did radically and positively change the life circumstances of persons living with an intellectual disability (e.g., Allen, 1989; Cambridge, Hayes, Knapp, Gould, & Fenton, 1994; Castellani, 1992; Edgerton, 1993). The philosophical principles inherent in these policies mirrored those of other persons seeking recognition (e.g., the civil rights movement in the US). By the 1970s, advocacy groups wanting to change public policy had emerged globally in many nations. The philosophical principles gave priority to treating all persons as persons with the right to life, liberty, self-­ determination and freedom of beliefs. The policies that followed in the majority of western nations advocated securing legal rights for persons living with a disability along with independence as autonomous persons. The term western nations refer to a sovereign nation state that has been reformed by at least three significant ethical, political and economic transformations. The first phase developed from the religious reformation emanating from Europe; the second when nation-states formed centralized political identities and the final phase includes the development of a free-market economy. These transformations have therefore created economic, social, cultural and political conditions that inform how persons live their lives and how institutions act and govern. Disability and the experience of living with an intellectual disability are multidimensional; there is a personal dimension, a societal aspect and an interactional dimension. In the personal sphere, the World Health Organisation offers a commonly accepted definition: Disabilities is an umbrella term, covering impairments, activity limitations and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives. (2012, paragraph 1)

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As many theorists have explained, the social model of disability argues that disability is a social impairment rather than a fault in an individual and that it is society that imposes and limits one’s personal abilities (Oliver, 1996). One means of understanding the distinct relationships that explore disability, spaces, places and networks are through postmodern, critical disability studies and post structural theoretical models of disability. Critical social theory is an approach that has gained traction within disability practice; with its focus on oppression, it seeks to enable action, change and transformation. Thus, disability studies are aimed at challenging the exclusion of persons living with an intellectual disability and their marginalization as citizens in a western nation (Gilbert, 2004; Owen-Mills, 1995; Walmsley, 2001). Western nations have embraced these theoretical frameworks to a greater or lesser extent; for instance, the Nordic relational model differs from other western models, for instance, the social model of disability (Goodley, 2010; Traustadottir, 2006). Vehmas and Makela (2009) highlight some shortcomings to the postmodern framework and further the insights from critical disability studies (e.g. Tremain, 2005, 2017) that have not been embraced universally; for example, Australia has been influenced by the normalization and social role valorization agendas (Carling-Jenkings, 2014). Although it is common amongst scholars to distinguish between the notions of disability and impairment, it is by no means a uniform practice nor is the distinction universally observed. Nonetheless, there are important distinctions to be made. Berger (2012) succinctly captures the difference when he states, “impairment is a biological or physiological condition that entails the loss of physical, sensory or cognitive function. Disability is an inability to perform a personal or socially necessary task because of that impairment or the societal reaction to it” (p. 6). There are, as Wolff (2010, p. 157) also attests, significant differences between persons living with a physical disability and persons living with an intellectual disability and attempts to categorize and establish a monolithic disability structure is simply a “hopeful fantasy of a single, grand narrative” (Watermeyer, 2012, p. x) and most likely impossible. More recently, the Clegg and Bigby (2017) discussion of dedifferentiation is a concise and cogent argument for the unique issues associated with persons who live with an intellectual disability. Clegg and Bigby (2017, pp. 91–93) offer some strategies

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designed for persons and institutions to engage in dialogue that will promote differences without adversely impacting upon any particular person or cohort. This book supports these scholars’ argument that the living experience of an intellectual disability challenges the entire normative patterns of life. Nonetheless, these patterns or norms can be addressed, albeit significant changes are required in personal, social, cultural and institutional spheres that transcend contemporary practices. Disability policies of western governments have taken an active and leading role in administratively and legislatively providing resources to enhance the lives of persons living with an intellectual disability that theoretically acknowledge these differences. The institutional changes that commenced in the 1950s were assisted by scholars and practitioners who developed alternative models of support, with the normalization principle (Bank-Mikkelsen, 1969, 1980; Nirje, 1969, 1985) and later social role valorization (Wolfensberger, 2000) becoming the new nomenclature for service delivery for persons living with an intellectual disability. Normalization refers to facilitating spaces where persons living with any form of disability are not discriminated against, are valued by the society s/he lives in and lives the typical rhythm of life that all other persons in that society live. Nirje describes normalization as “making available to the [person living with the experience of an intellectual disability] patterns and conditions of everyday life, which are as close as possible to the norms and patterns of mainstream society” (1969, p.  181). Wolfensberger (1983, 1998) built on the work of Nirje (1969) and Bank-Mikkelsen (1969) to postulate a scientific theory that can be applied universally. He takes as a starting point that persons living with an intellectual disability hold devalued roles. That is, persons typically hold the lowest “place” on any social hierarchy. Additionally, persons are often viewed as deviants and the organizations that were established to provide support actually restrict their personal flourishing and reinforce culturally held myths about their competency and personhood. Wolfensberger (1998) defines social role valorization as “the enhancement, establishment, maintenance and/or defence of valued social roles for people, particularly for those at risk, by using as much as possible culturally valued means” (p. 32). As policy and practice progressed, other paradigms developed: the social model of disability (Finkelstein, 1980; Oliver, 1983, 1990;

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Shakespeare, 2017; UPIAS, 1976) and since the 1990s, critical disability studies (Meekosha & Dowse, 2007; Pothier & Devlin, 2006; Shildrick, 2012; Tremain, 2005). Both paradigms have influenced government policy. The social model of disability challenged the medical model and was underpinned by a social theory of disability which argues that decision-­ making about persons with disabilities needs to be determined by these persons and, further, the theory promotes the development of a political movement to define and articulate their own needs (Oliver, 1990). Critical disability studies hold emancipation as a key concept and draw on a number of social science disciplines (feminism, philosophy, sociology) to seek social transformation. Critical disability studies are focused on power relations and examine how hierarchical relationships can inhibit personal flourishing and sustain adverse cultural and institutional situations for persons living with the experience of intellectual disability. Amongst the plethora of legislative changes that have been introduced, there is, in the United States, the Americans with Disabilities Act (1990). This was designed as a comprehensive civil rights legislation focusing on the needs of persons with disabilities and discrimination in the major life domains (Equal Employment Opportunity Commission, 2017). In the United Kingdom, the Disability Act (2010) and the UN Convention on Disability Rights (2006) provide the legal framework for securing individual rights (UK Government, 2017). The Canadian Charter of Rights and Freedom and the Canadian Human Rights Act are the primary frameworks used in Canada to promote the rights of persons with disabilities (Government of Canada, 2017). Australia’s legislation includes the Disability Services Act (C’th) 1986 and the Disability Discrimination Act (C’th) 1995. Most recently in Australia, the National Disability Insurance Scheme (NDIS) was introduced in 2013, with an aim to provide persons with disabilities the “the care and support they need, based on their individual support needs, goals and aspirations” (NDIS, 2013). The European Commission (2010) has developed the European Disability Strategy 2010–2020, which builds upon the 2006 United Nations Convention on the Rights of Persons with Disabilities to promote the active inclusion and full participation of all persons living with a disability in society. As an international organization aimed at affirming the fundamental rights of human persons regardless of gender, culture, faith or citizenship,

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the United Nations aims to promote social progress and better standards of life for all human persons (United Nations, 2017). The declaration of 1981 as the International Year of Disabled Persons and, further, 1981–1992 as the “Decade of the Disabled Persons,” recognized persons’ needs and this could have maintained the public profile of persons living with disabilities combined with advocacy movements from self-­advocates, family members and professionals. The declaration may also have sustained commitment from governments to enact resource allocation in many western nations. The concepts, principles and values inherent in the United Nations Convention on the Rights of Persons with Disability (CRPD) belong to all persons (United Nations, 2006). The declaration recognizes the right of all persons living with a disability to have their personal rights upheld; to experience social inclusion in their communities and engage in and be engaged by the formal institutions in their society. By 2016, 168 member states and the European Union had signed the Convention. This represents 87% of member states of the United Nations (United Nations, 2016). In essence, for persons living with an intellectual disability in a nation state that has validated the CRDP, they live in neoliberal societies whose public policy rhetoric, in theory at least, means they will experience social inclusion in their community. There is also an onus on formal institutions to engage persons in decisions that impact upon such persons’ personal lives. Nonetheless, there remain “vast differences between national states of research, interpretative frameworks and political awareness” (Grue, 2012, p. 46) of the needs of persons living with an intellectual disability. In other words, have persons living with an intellectual disability invaded the consciousness of other citizens and institutions and do they live comparable lives to their fellow citizens? How are we to understand these differences? Are they based on the approach of specific nations, or are they more deeply embedded in western culture or a combination of these and/or other factors? Research findings offer us support in discerning what has occurred.

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3.4 Economically Excluded: Emphasizing Disability A primary positive value in western societies is the notion of work or paid employment. The education systems are focused on providing generic knowledge that persons will need to function within their society and knowledge and power to find productive employment. Securing a school qualification is a pathway to further education or employment. The notion of persons living with an intellectual disability securing paid employment is a central goal of policies of social inclusion; for example, those instituted by the Department of Health in the United Kingdom (2001) and the Scottish Executive (2001). Moreover, persons living with an intellectual disability, when asked, also state their desire is to work (Smyth & McConkey, 2003). However, the actual number of persons who secure paid employment is limited. The Lysaght, Outellette-Kuntz, and Lin (2012) study explored the minimum role persons living with an intellectual have in the Canadian employment system. The study’s findings reveal that if employment patterns are to change and for more persons to have access to employment, then major shifts in government policy, workplace practices and vocational/employment preparation programs will be needed. In the United Kingdom a recent survey reveals that persons living with the experience of a disability were paid 12% less than their peers (Butler, 2019). In a study in Ireland that focused on the employment experiences of persons living with the experience of an intellectual disability, McCausland, McCallion, Brennan and McCarron (2019) discovered that such persons experienced lower rates of employment than their peers. For persons aged between 50 and 64 years of age, employment rates were 6.6% compared to 54% of persons living without the experience of an intellectual disability. The survey did reveal that participants who were unemployed and engaged in occupational activity experienced better emotional and mental outcomes through their personal engagements. There might thus be some value for every person to work less intensely!

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Further research findings appear to indicate that although persons living with an intellectual disability are located in typical housing settings in large and small cities in western nations, their social, economic and personal lives remain atypical compared to persons living without an intellectual disability. Attempts have been made to suggest reasons why, in light of political and disability sector institutional support, persons living with an intellectual disability have been unable to penetrate or permeate the social and economic stratum of their society. In New Zealand, Grant (2008), while noting that persons with disabilities are “chronically underemployed and unemployed” (p. 95), reports on one agency’s approach to securing employment for persons living with an intellectual disability. Although the findings reveal success for 11 persons, while not devaluing the personal benefits to these persons, this only represents 0.11 per cent of the number of persons living with an intellectual disability who were registered with the agency. Similar findings are found in other jurisdictions. For instance, a larger scale scoping study of inclusion with a focus of employment in Canada reveals that there is an absence of evidence to support the claim that social inclusion is being attained through community-­based employment (Lysaght, Cobigo & Hamilton, 2012). These findings also serve to reinforce the research from Gooding, Anderson and McVilly (2017) in Australia.

3.5 Ostracized Other: Social Pariah The education system may serve as a good example of how young persons are socially excluded in their formative years. The scholarly corpus completed in education systems across western nations is vast and what I seek to highlight, albeit selectively, is how scholars have demonstrated that the educational system has failed to be “hospitable” to students living with an intellectual disability. Being “hospitable” implies creating developmentally appropriate educational spaces that invite young persons living with an intellectual disability to participate and develop knowledge and skills through meaningful educational programs. This example is by no means representative of all nation states’ policies or realities. One example of positive practices is Trinity College in Dublin, Ireland, which provides

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higher education programs at Level 5 of the National Framework for Qualification for persons living with the experience of an intellectual disability (Trinity College Dublin, 2018, 2019). Nonetheless, there are also systems that need significant reforms, for example, as expressed by McCoy and Banks (2012) and Mc Guckin, Sheeevlin, Bell & Devechi, 2013). Thus, McCoy and Banks’ (2012) research examines why students who live with an intellectual disability are less likely to engage with school curriculum than their peers and what barriers these students meet in trying to achieve inclusion. These researchers discovered that both academic engagement and social engagement represent significant roles in understanding how students engage and are included in schools and curriculum. A further example is a third hand perspective of how persons living with an intellectual disability experience education and belonging during their formative years. In the United States, Krezmien, Travers and Camacho (2017) examined the retention rates of students with autism and/or intellectual disability in the state of Maryland over an 11-year period. The findings reveal that African American students and white students with autism and intellectual disability experienced higher levels of suspension when compared to white students without an intellectual disability. Further studies in the United States have also indicated that students living with a moderate and severe intellectual disability are at high risk of social isolation in and out of the school environment (Siperstein, Parker, Bardon & Widman, 2007; Smith, 2007). Moreover, these risks are heightened by the nature of the personal attributes of the students, and the teachers’ limited knowledge, skills and training in adaptive communication (Zascavage & Keefe, 2004). Slee and Allen (2001) examined inclusive educational practices in Australia and the United Kingdom and discovered that “assimilation seemed to be flawed at all levels. It is a form of genocide that denies legitimacy of differences and which falls on it’s own academic sword” (p. 186). For most persons, one common feature of living a meaningful social life is personal friendships in which participants are able to choose to engage in enjoyable and meaningful activities that strengthen the relationship and supports or creates emotional and reciprocal bonds with other persons. The notion of friendship being central to human life extends as far back to Aristotle who argues that “no one would choose to

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live without friends” (Aristotle, trans. Irwin, 1999, p. 1156a5). Although friends share degrees of symmetry, friendship is voluntary and typically friends mutually receive and offer each other different gifts that enhance personal and shared lives (Reinders, 2008). Research findings from studies of friendships of persons living with an intellectual disability continue to indicate that persons have a dearth of personal relationships, are lonely and isolated from other members of their society. In 2004, Emerson and McVilly studied the personal lives of 1542 persons living with an intellectual disability in the United Kingdom. Their findings revealed that over a four-week period, persons reported a mean of two activities shared with friends; however, none of these friends was a person without an intellectual disability. This relational paucity of non-peer friendships continues as a dominant theme in further research findings on friendships. For instance, Verdonschot, deWhitte, Reichrath, Buntinx and Curfis’ (2009) review of over ten years of international research reveals that on average, persons with an intellectual disability have a social network of 3.1 persons. At least one of these persons is a paid staff member, which challenges the notion of these relationships being “friendships” since the former is arguably a result of employment rather than a freely-given relationship based on shared mutual interests. In Ireland, the findings from a research project discovered that the social networks of older persons with an intellectual disability differ considerably from those generally held by the older population, with a reliance on support staff and co-residents in place of their own immediate family systems and wider friendships (McCausland, McCallion, Brennan & McCarron, 2018). One advantage of friendship is knowing there is a person who is impartial towards you—that is, s/he cares about you in a way that others do not. A further characteristic of mutual friendship is friends freely consenting to the relation through a shared understanding of what that means for the other persons, and this implies we have duties to our friends (Telfer, 1970). However, Reinders (2011) argues that the current policies on social inclusion fail to account for the person living with the experience of an intellectual disability as active participants in a friendship relationship (“a receiver”, p. 31). Thus his argument is that policies fail to recognize that critical values in our lives as human person, the need to love and be loved, are dependent upon being recognized as a person with

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emotions and social needs by all citizens in societies rather than being recipients of care services. Reinders’ (2008) review of persons living with the experience of an intellectual disability in the Netherlands focuses on the ethical principle of equal citizenship towards parents who live with the experience of an intellectual disability. Reinders (2008) included at least one person as a parent who lives with the experience of an intellectual disability. His analysis demonstrates that if this principle (equal citizenship) is applied, and the social-economic reality of the lives of persons contextualized, then it is “surprising” (p. 313) that 33% of such persons meet the standard of “good enough parenting” (p. 313). This is the normative standard in the Netherlands. Unfortunately, Reinders (2008) discovered at least two instances, where persons living with the experience of an intellectual disability were discriminated against as parents on the basis of intellectual disability. In the last Sect. 3.4 the survey of studies that examine how persons living with an intellectual disability are engaged in economic activity and the nature of personal relationships in western societies discloses that their lives are far from complete. Economic activity has a value in these societies for a number of reasons, including that it is a means of holding a valued social role (Wolfensberger, 2000) and potentially enables persons to secure wealth. In 2013, as the National Disability Insurance Scheme was being trialled in Australia, McLachlan, Gilfillan and Gordon completed a report, Deep and Persistent Disadvantage in Australia, for a government agency, the Productivity Commission, and at a relational level, the report discovered that: • 16% of persons with a disability had been visited by family and friends in the last 3 months; • Approximately 59% of persons had not received a phone call from someone in the last 3 months; • Approximately 44% had not used the Internet in the last 12 months; and • 18% of persons had no social contact with another human person in the last 3 months. (McLachlan, Gilfillan & Gordon, 2013, p. 140)

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There are a number of important observations to be drawn from these findings. First, it is crucial to note that these findings do NOT refer solely to persons living with an intellectual disability, rather to persons with other living experiences of disability. No surveys were conducted, so persons’ lives may be richer or not. Second, the dearth of personal relationships (Bigby & Wiesel, 2011; Emerson, 2005) can lead to loneliness. Gilmore and Cuskelly’s (2014) study suggest that up to 50% of persons living with an intellectual disability are “chronically lonely”, which compares to 15–30% of persons without an intellectual disability. Third, there are also other associated issues with loneliness, for instance, multiple adverse health issues, physical health risks (Hawley, Thisted, Masi & Cacioppo, 2010), lower levels of experiencing personal meaning to one’s life (Stillman et  al. 2004), and mental health issues (Geller, Janson, McGovern & Valdini, 1999) that leave persons susceptible to forms of abuse (Sherry, 2010). Singularly, or indeed combined, these issues contribute to persons, at best, living on the fringes of society and, at the extreme, being socially and relationally ostracized from society. Tilly’s (2019) research on loneliness and belonging drew upon literature on friendships and social exclusion in the United Kingdom to reveal what the social barriers are that persons experience in their day-to-day lives. The research also identified potential approaches that could facilitate improved personal relationships and community connection and belonging. Finally, Tilburg’s (1990) research indicates that the four persons closest to any other person offer the most robust protection against loneliness and exploitation and, indeed, a person will feel less lonely the more diverse relationships s/he experiences. Recall earlier the research by Emerson and McVilly (2004) and Verdonschot et  al. (2009) indicates that persons living with an intellectual disability have 2 and 3.1 friendship circle. These “friends” are either peers or persons in paid support relationships and hardly qualify as “diverse relationships” to mitigate loneliness and/or exploitation. The findings from Ginsberg, Hendricks, Jahoda, Hastings and Embregts’ (2018) research are troubling. They reveal that for persons living with a mild intellectual disability, their closest and most significant relationships were with paid support personnel and that living in a local community for persons living with an

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intellectual disability had not contributed to persons experiencing meaningful social inclusion. This could imply that persons living with an intellectual disability have limited protection against loneliness and potentially maximum exposure to experiencing exploitative relationships. Social policies of inclusion for persons living with an intellectual disability are not achieving their goals in the economic and relational spheres. Persons typically do not have paid roles of employment nor are they engaging with persons living without an intellectual disability in the social sphere. I am suggesting that this phenomenon emanates from, first, ignorance regarding the nature of intellectual disability; and second, for many persons, an inability to overcome innate socialization processes. This form of ignorance may be interpreted as maintaining forms of power that reject engagement with, or liberation from, these beliefs by considering the position of other persons. It could be that persons living without an intellectual disability consider that knowledge or developing personal skills are something s/he is not interested in acquiring. I am not suggesting that persons are not free to choose how to act. However, I wonder, first, is this a free response and second, why are such persons not interested and thirdly do persons assume a moral authority and superiority over persons living with an intellectual disability? Secondly, not so many years ago, persons living with an intellectual disability experienced oppressive living conditions and service practices in western societies that permitted adverse treatment. The failure of persons living without an intellectual disability to understand the privileged position they hold and their failure to absorb these personal experiences underlies and contributes to the inequities in economic and relational spheres in western societies.

3.6 Intellectual Disability as a Social Category All persons are members of social categories and being a member of a category or set of categories that are valued by other persons can contribute to personal self-esteem, well-being or flourishing and one’s personal role or position in local communities or societies. A social category can be defined as a collection of persons who share certain attributes or traits

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and who may or may not engage with each other on a regular basis. Berger, Cohen and Zeldicjm (1972) and Ridgeway (1991) developed the status characteristics theory, which holds that specific attributes (e.g., being male or female, a white person or person of colour) fashion and anticipate competencies or proficiencies from other persons when they first encounter a member of these groups. These competencies, in turn, generate dynamics that assist persons to react with superiority and/or respect and this enables the categories to perpetuate negative category status inequalities in personal engagement, prestige and resources. The opposite can also apply; persons can be associated with a set of attributes, correctly or incorrectly, that are held in high regard by a community or society and experience benefits on this basis. This awareness of categories can be useful in understanding how persons living with an intellectual disability are often considered as a separate category. It also assists with psychological understanding of social categorization (Kite, Deaux & Miele, 1991). The psychological research findings from the Stereotype Content Model (Stewart, 2016) offers further illumination on what the perceptions of a person living without an intellectual disability are of an other person or group. This other refers to persons living with an intellectual disability and the model assesses the perceived warmth and competence persons hold towards an other. The warmth aspect provides a response to the question, “How friendly and trustworthy are this other’s intention?”. The focus, here, is on a person’s immediate judgement of an other. The competence extent assesses “How well can this other enact those intentions?” (North & Fiske, 2014, p. 9). The theorists argue that from these binary dimensions, four noticeable groups or clusters emerge that (a) categorize different persons in social groups and (b) assign an emotional prejudice to persons who are members of these groups (Fiske, Cuddy & Glick, 2007). In this way, persons may lose their place in the social hierarchy of their community and society. These emotional prejudices are: (1) Pride (2) Envy (3) Contempt and (4) Pity. In the context of citizens of the United States, white middle class heterosexual Christians are the persons who occupy the pride dimension and are those who are judged with high warmth and high competence. Rich persons, white and black professionals, lesbians, black professionals and career women fall in the envy

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category and are accorded low warmth, no friendliness yet high competence. As might be expected, persons who have minimal, if any, financial and/or social networks—homeless persons, immigrants and persons who are addicted to drugs—are accredited with low warmth and low competence and fall into the contempt or disgust category. Finally, persons with an intellectual disability occupy the pity category, which accords high warmth and low competence status. The behavioural tendency towards members of this group leans towards helping and protecting persons living with an intellectual disability and an expectation that persons are passive and complying (North & Fiske, 2014). Moreover Cordell et al.’s research confirms that racial bias is also held by state actors (e.g., police) and this can serve to negatively impact upon persons. These studies echo Toronto’s (1993) study on care and how it can contribute to paternalism. Further studies have confirmed that these findings from the United States permeate European cultures as well (Cuddy et al. 2009), so there is a high degree of consistency in the way persons act and engage with a person living with an intellectual disability in western nations. Therefore, the default response for most persons living without an intellectual disability is to view persons with pity and an inclination towards engaging with persons in a paternalistic manner. Persons living with an intellectual disability are also expected to demonstrate passivity and comply with the requests of persons living without an intellectual disability. They can act in such a way that limits the autonomy and freedom of the person living with an intellectual disability in the belief that they are acting in the person’s best interest and so promoting the person’s own good. Other studies (e.g., Kleck, 1966) on the perception of persons living with an intellectual disability also reverberate Goffman’s (1963) findings linked with stigma. A stigma can be understood as a personal or social characteristic that is judged as a negative attribute. Thus the person or group who is deemed to hold this characteristic is discredited and discriminated by other persons and/or society, who do not process that attribute. A bodily characteristic can be judged as a stigma; examples include blemishes or physical deformities. A stigma may also be applied to a person’s character, for instance mental illness; or to social collectives such as persons who are of a particular ethnic or racial origin. As Goffman notes, the person making the judgement is attributing “a virtual social identity”

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to an “other” rather than their “actual social identity” (2006, p. 131). The person judging may or may not be making an informed decision and if uninformed, it emanates typically from his/her cultural socialization process. The effect for the person making the judgement is to act without personal freedom and believe the person is not quite human, deficient in some way and fabricate a “stigma-theory” (Goffman, 2006, p. 132) to justify and explain his/her beliefs. Goffman (2006) argues that the combined effect of a stigma prevents a person from engaging in typical social interactions with persons who do not process the stigma. This fractures the natural social connections persons share as members of society. What we have in common with other persons is the desire to live a decent life, a life where we can love, be loved and respected, meet our basic physiological needs and be in solidarity with other persons and the environment. If we follow Goffman’s (1963) argument, then we could say that any person might be stigmatized since the value attributed to physical and social characteristics as well as race and ethnicity varies depending upon spatial and cultural location. This relies on stigma being relative and a consequence of social comparison that operates along a continuum that may lead to downward or upward mobility. Stigma is a type of relationship that enables some persons to acquire social power, allowing them to feel superior to groups or a person, and granting other persons a sense of inferiority. Goffman (1963) and other scholars, such as Stafford and Scott (1986), note how when many persons become aware of the stigma that has been attached to their identity, they often try to hide their difference and on occasion argue that their difference is minor compared to other members of the category. The behaviour that may contribute to persons being stigmatized includes both verbal and non-verbal communication, speech impediments, augmented forms of communication, eye contact, body language and interpersonal distance. Typically, our personal interactions follow stereotypical actions. Persons avoid or socially reject the other as a strategy against acculturation or restraint (Edgerton, 1967; Goffman, 1963). Coleman (2006) offers a summary of the history of stigma and understanding of how, in the formative years of child development, the predisposition to stigmatize is culturally embedded and processes develop our senses, which in turn are linked to behavioural, affective and cognitive constituents of stigma.

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If stigma is ascribed to a person or a group, what are the factors that enable that person or group to overcome stigma? Our modern world has many examples where persons who were stigmatized have surmounted the cultural and social obstacles that devalued their status as persons. These persons, including Mahatma Gandhi, Rosa Parks and members of the western global homosexual community, have altered the way society now interacts with persons who were dehumanized, discriminated against and segregated as persons. Anderson and Bigby (2016) suggest that one dimension to empowering persons living with an intellectual disability to challenge stigma is through enabling persons to become participatory members of self-advocacy groups (pp. 170–174). Another strategy that might assist in enabling persons to overcome the attitude of pity towards persons living with an intellectual disability is in understanding the human person as vulnerable (Fiske, 1998, 2002; Kristeva, 2006, 2013; Rapley, 2004). Many persons construct their lives around values such as bodily perfection, knowledge, power and social esteem and a desire to associate with others and groups that self-perpetuate similar values. Accordingly, it is difficult to relationally and socially engage with persons (a) whose body may look different, (b) whose knowledge will be focused in the practical and relational spheres, (c) who may not exercise power or influence over other persons or groups and (d) who need their personal dignity acknowledged and honoured. If, however, persons become clearer that being human means we are fragile, our bodies and cognition are limited and they will diminish over time, then our emotions and emotional responses can become repositories of affection and love that can reveal to us the beauty of all persons who share in our diverse humanity (Fiske, 1998; Kristeva & Herman, 2010; Vanier, 1998).

3.7 Conclusion The theme of this chapter is that social policies of inclusion are such that persons living with an intellectual disability are located in  local suburbs.  And this policy has become the dominant paradigm in western societies. On the one hand, persons living with an intellectual disability have been “invading [the] consciousness” (Macmurray, 1961, p. 68) of

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persons living without an intellectual disability, local communities and wider society. That is, the greater the number of people living in smaller congregate care dwellings with families or in independent situations offers such persons a physical presence in local communities rather than an active citizenship or valued role presence. On the other hand, persons living with an intellectual disability are hidden, insomuch as the research indicates persons living with an intellectual disability do not actively participate in social, economic or cultural activities (Emerson & McVilly, 2004; Slee & Allen, 2001; Verdonschot et al. 2009). I propose that persons living with an intellectual disability are now economically ostracized from the workforce and, further, that persons living with an intellectual disability remain socially and relationally removed or distant from participating in the ordinary rhythms of life in their local community.

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4 Social Policies of Inclusion and Neoliberalism

4.1 Introduction The model presented in Chap. 1, Critique—Praxis—Emancipation, will now be used to explore the dominant philosophical values that stand behind the economic and social paradigms that influence and control the lives of persons living with an intellectual disability in western nations. For our purposes here, praxis will present the features of the dominant economic discourse used to administer, fund and regulate service provision to persons living with an intellectual disability. The social sciences rely and, indeed, use each other’s knowledge to develop theses or to substantiate their own arguments. For instance, the neoliberal theories in economics take learnings from psychology about the motives of human behaviour and then aggregate these motives into a model of how persons will behave in a market economy. There is, then, an incline within the social sciences; they are interconnected through economic and social values. Western nations accept these philosophical assumptions and try to integrate them with social justice initiatives such as the Convention of the Rights of Persons with Disabilities (CRPD). Therefore, the philosophical values inherent in neoliberalism and the CRPD have currency with those © The Author(s) 2020 D. P. Treanor, Intellectual Disability and Social Policies of Inclusion, https://doi.org/10.1007/978-981-13-7056-4_4

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found in western nations. Praxis will also include a discussion on the often-overlooked role the characteristics of an institution play in the personal lives of persons living with an intellectual disability. The Australian National Disability Insurance Scheme (NDIS) will be used as a critique to assess how neoliberalism’s philosophical values serve persons living with an intellectual disability in a western nation state.

4.2 The Features of Neoliberalism Governments in western nations have, to a greater or lesser extent, made available resources to organizations that provide personal and community living support to persons living with an intellectual disability (Fevher & Lévesgue, 2008). This chapter’s focus is on the philosophical values that underpin the social and economic theoretical frameworks that influence government policy to provide these resources. Governments may desire to assist persons for a myriad of reasons. However, the economic scorecard will influence its capacity to realize these desires. This interrelationship of economics and social sciences is articulated by Parsons and Smelser (2001). Their study “demonstrate[s] that economics must lean on the social sciences, both on the theoretical and empirical levels, as [the social sciences] must lean on [economics]” (1956, 2001, p. 1) to validate and implement their hypothesis. The intent of governments in western nations is to enable persons living with an intellectual disability to live fulfilled lives is clearly evident by their commitment to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006). It had the highest number of signatures in history on the first day the Convention was opened for ratification (United Nations, 2016). The Convention’s philosophical values confirm the unique personal value of each person and ascribe full citizenship rights to persons to be enabled to fully participate in their society. While there have been benefits for persons with disability through the visibility of the CRPD, the United Nations Committee on the Rights of Persons with Disabilities (2016) notes in a review that refers to persons who live in the UK that “evidence indicates a persistent lack of awareness and limited knowledge of disability rights and specific

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needs…particularly of persons with intellectual disabilities” (p. 18). In many western nation states, the government has introduced different types of legislation that honour the rights of persons living with a disability and provide resources and promoted policies that are aimed at persons living with a disability to live a good life and be active members of their local communities. For instance, the purpose of the New Zealand Disability Strategy expressed through the New Zealand Public Health and Disability Service Act (2000) is to influence the work of disability agencies and funded services to be a non-disabling society, where all persons living with a disability have “equal opportunity to achieve their goals and aspiration” (Office for Disability Issues, 2018). The system, Enabling Good Lives, that has been implemented in New Zealand since 2018 is congruent with contemporary disability social practices that promote a person’s choice and control over the supports s/he is offered, his/her life and, where available, the use of natural or universally available generic supports. Governments operate in a global environment, and since the 1980s, there has been a convergence of economic, social and political influences. This has resulted in a desire for a more efficient and smaller public sector in western societies (Schwartz, 1994a, 1994b). The shift to this paradigm also includes confidence in the economic market-place as a preferred methodology for government policy decisions (Dunleavy, 1991). The philosophical values associated with the theory include the notions of autonomy, choice, self-determination and good. The strategies used to operationalize these policy decisions include contracting out, commercialization and privatization of existing government-managed services and free trade and regulation. This economic paradigm is commonly referred to as neoliberalism, and governments embrace this paradigm in both a thin and a thick sense. Thin refers to minimal integration of these economic and social policies in the respective nation state, and thick refers to implementing these neoliberal policies and practices as much as possible. Neoliberalism is, therefore, both a collection of ideas and a direct and determined form of regulation (Brown, 2006; Dean, 2014). A nation state that is characterized by the following features may be considered as implementing a neoliberal paradigm. In summary, these features include:

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1. Approach to the market-place—the governmental approach is to minimally intervene in its immediate or local market-place. The government focus is rather on international trade, investment, maintaining the cost of labour at a minimum and free movement of goods and capital, with the market setting the price for goods and services (Monroe, 1991). Markets will be able to adapt to consumers choices and demands. 2. Reducing government expenditure—government expenditure and provision of services act as a safety net rather than as a common intervention strategy; that is, government envisages its role in infrastructure development that enables markets to develop to produce and deliver goods and services rather than fund and provide services (OECD, 1992). 3. Deregulation—regulation can act as a disincentive to private investment in the marketplace and, therefore, the role of government is to act as an enabler, to create incentives for investment in goods and services, or to use the power of the law to impose regulations that will promote the societies’ interest (OECD, 1987). 4. Privatization—if government is to provide goods and services, the market needs to be tested to assess if these goods and services can be provided in the for-profit or not-for-profit sectors or both (Donahue, 1989). If these sectors are unable or unwilling (e.g., the cost is prohibitive) to engage with the market, then, and only then, will government consider entering the market-place. 5. ‘Public good’ or ‘Community’—in neoliberalism there is an emphasis on persons as autonomous individuals, that is, as independent persons who act rationally and freely of their own accord rather than as persons who are interdependent (Buchanan, 1978). There is also a belief that persons can act for their own good, and this conflicts with the notion of a “public” or “common” good shared by all persons (Reinders, 2000, pp.  193–198; see also Mortensen, 2014). These latter views understand persons as interdependent persons and are congruent with the philosophy of personalism (Mounier, 1952) and Kristeva’s theory of disability. (Kristeva & Herman, 2010) The effect of this paradigm on western nations depends upon the extent to which a nation has embraced each of these different

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characteristics. For example, the introduction of the National Disability Insurance Scheme (NDIS) in Australia as a market-based solution to the administration, regulation and provision of disability services posits the nation as more fully embracing or exhibiting a thick conception of neoliberalism. A further thick conception is revealed through Mladenov, Owens and Cribb’s (2015) analysis of the continued roll-out of the personalization policy agenda in the United Kingdom for disability services following the global financial crisis in 2008. Their findings indicate that personalization served only to validate an “agenda of financial restraint and austerity” (2015, p. 319). An instance of a thin concept might be that while nation states enact legislation that offers citizenship rights to persons living with an intellectual disability, a person can be denied the right to legal capacity on the basis of his/her intellectual disability. This can occur with the absence of systemic structures that offer salience in a theory of justice. For instance, Baruch (2017) makes a compelling argument for Canada to introduce appropriate policies of inclusive citizenship to build robust supported decision-making systems to honour personal autonomy whilst creating “communities of belonging” (p. 20) for everyone. Failure to move in this direction only serves to legislate for individual “rights” rather than actually accord, acknowledge and enable full citizenship rights to persons living with an intellectual disability. The global changes in the economic paradigm also affected the social life of persons living with an intellectual disability. The most obvious transformation was the move from accommodating persons living with all forms of disability from institutional and congregate living to alternative forms of living to include individual and shared living models. The next section will examine what change has extended through the paradigm: that is, whether the change has created “asylums without walls” (Dear & Welch, 1987, p.  6) rather than appropriate personal care to maintain well-being, promote personal flourishing and meaningful social, relational, economic and political opportunities to live in mainstream communities.

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4.3 The Central Features of Institutionalism The seminal works by Bank-Mikkelsen (1969) and Nirje (1969) on normalization offered an alternative philosophical basis to a model of accommodation support for persons living with an intellectual disability. This paradigm was refined and strengthened through social role valorization (Wolfensberger, 1983) and the social model of disability (UPIAS, 1976) as the move from large congregate care settings to smaller community-­ based homes became the accepted form of service provision for persons living with an intellectual disability beginning in the 1970s. The former model of service provision was viewed negatively as a type of total institution that deprived persons of their personal liberty, self-worth and dignity, and in many places, persons were abused: for example, Willowbrook Institution in the United States of America (Rivera, 1972). Rivera (1972) depicted the horrific conditions that persons lived under at the institution in Willowbrook, New York, which at the time provided a home to 5000 persons. The sanitary conditions, use of restraints, restrictive practices and lack of educational or rehabilitation programs and formidable instances of neglect were exposed through the public media (Glasser, 1978, pp. 99–168). As many other disability scholars have noted, these changes parallel shifts in attitudes towards other marginalized persons in western societies (Oliver, 1990, 1996). Indeed, Carling-Jenkins (2014) traces the developmental phases of “new social movements” that challenged the dominant orthodoxy to enact social change in Australia (pp.  67–104). In Sweden and Norway, institutions were replaced by community services (Ericsson, 2002; Tossebro, 2004) and substantial progress has been made in other western nations (e.g., Braddock, Hemp, & Rizzolo, 2004; Mansell, 1997; Mansell & Ericsson, 1996) to provide personal services to persons living with an intellectual disability in local communities. Thus, in the majority of western democratic nations, persons living with an intellectual disability are more likely to live in a household in the suburbs of an urban centre. In a three-year ethnographic study, Erving Goffman studied the behaviour of persons with a mental health condition living in hospital wards “to learn about the social world of the hospital inmate” (1991, Preface).

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His study also included persons who lived with an intellectual disability who were often located on the “back wards” rather than being directly able to engage in the life of the institutional community. Goffman notes that, towards the end of his study of institutional life, his findings are valid and do include “homes for the mentally retarded” (p.  309). The term mentally retarded was used in the United States at this time to refer to persons living with an intellectual disability. Goffman identifies a truism regarding personal social arrangements that remains valid for modern society. Most persons tend to “sleep, play and work in different places, with different co-participants, under different authorities, and without an overall rational plan” (1991, p. 17). However, he noted that this was not how persons in his study lived their lives and he offers five types of social establishments, which act as an exception to normative lifestyles and suggests the term total institutions to define these social establishments. Goffman writes that these general characteristics are fluid, and since they may not be replicated exactly in each social setting, they serve as exemplars. He writes (1991) that total institutions are arrangements established for persons who are: 1. Unable to care for themselves and harmless, for example persons who are blind, orphans 2. Unable to look after themselves and a threat to the community, for example persons with a mental health issue; 3. A danger to the local community, for example prisoners 4. Gathered for an instrumental purpose, for example students, soldiers 5. Committed to particular religious way of life, for example monks, nuns (1991, p. 16) The social arrangements for persons living in a total institution are disrupted since a total institution establishes an authoritative anchor that structures social arrangements for persons as an aggregate rather than promoting personal flourishing. By personal flourishing, I mean providing opportunities for a person to reach his/her preferred educational, social, health, personal and economic goals and aspirations (Battaly, 2015, pp. 131–137; Reinders, 2000). Persons also need to have the capacity to exercise personal freedom, pursue friendships and opportunities to access

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other external goods and will live unrestrictive lives. Goffman’s research indicates that the effect of the total institution structure is such that: 1. A person lives in a single geographical location under the authority of a single entity; 2. A person’s rhythm of life is shared with a large number of persons with a similar personal identity and who are supported, without distinction, to live the same rhythm of life; 3. A person’s rhythm of life is lived in accordance to a fixed cycle schedule that omits flexibility and is predetermined by the institution; and 4. When combined, the social arrangements of the institution are focused on meeting the goals of the institution rather than personal flourishing. (1991, p. 17)

At first glance it is obvious that some of these features are also revealed in other forms of institutions, for example, at a workplace during working hours, a person’s work life means s/he can be directed to complete specific tasks, will share the time with other persons in a single location and under the authority of the employer. Examples might be working in a call centre for a national or international telecom company or working in a general hospital. What distinguishes a workplace from an institutional setting is (a) that the authority of the former ceases for a person when s/he leaves the workplace after the hours of work; (b) the employee is free to permanently leave the place of employment at any time; (c) the employee may find time intervals in his/her work life to take some personal time, (d) a person may be ascribed a positive social status for the role or their work may be judged as of high value and (e) s/he receives payment for his/her services. There are also recognizable differences in family life; the relationship may be based on a biological and social connection, persons typically choose to live and share life together, and socialization is multi-varied, extending across development stages and often including persons from diverse communities. Therefore, what differentiates a total institution is that the cumulative effect of each of these features extends to such a depth that a person’s life is beyond his/her personal control. This is how we will assess whether disability services in western nations remain institutionalized despite the movement of persons to community-based living arrangements.

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4.4 Are Disability Services Institutionalized? Australia has been a member of the Organization for the Co-operation of Economic Development (OECD) since 1971 and the country’s macroeconomic and microeconomic policies and financial institutions have been assessed as “broadly sound” (OECD, 2017) and thus congruent with neoliberal economic and social principles. Since the 1990s, there has been a noticeable change by all Australian governments towards neoliberal principles (Pusey, 1991; Schwartz, 1994a). While this includes both the operations of the state and macroeconomic policies (Bell, 1997), the microeconomic sphere of “welfare services” demonstrates a more diverse approach to policy implementation with what can be judged as both thin and thick approaches to neoliberalism. The Fenna and Tapper (2012) study reveals that the activity within the welfare state in Australia was “contrary to the common picture of a declining welfare state” (p. 171). That is, the way “business” is completed is disconnected with neoliberal microeconomic principles. This might be one rationale to explain how the National Disability Insurance Scheme (NDIS) developed, with almost complete agreement from all stakeholders, as a market-based response to administering, funding and regulating disability services. That is to say, the major political parties in Australia support neoliberalism as a methodology, albeit to different degrees of intensity and speed of implementation. Advocates of the National Disability Insurance Scheme (NDIS) where able to point to the system as congruent with political parties’ economic and social ideology and this may have assisted with bipartisan support for the Scheme. Central to the expressed goals of the NDIS are a nationally coordinated approach, consumer choice and financial resources through taxation and locus of power to shift to persons living with a disability and/or their families. The paradigm is congruent with a thick conception of neoliberalism. The impetus for the National Disability Insurance Scheme (NDIS) emanates from a grass roots campaign (Hughes, 2017), and it might seem

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somewhat paradoxical that a cohort of persons who are typically judged as dependent with limited autonomy, reason and decision-making skills (MacIntyre, 2001) are now the primary agents in “a choice-driven, market-­ dominated economy of services” (Fyson & Crosby, 2013). Moreover, there are also no systemic processes that are directly concerned with empowering persons living with an intellectual disability to develop their personal autonomy, reason and decision-making skills to fully participate in the emerging market economy. On the one hand, this might constitute a market-failure and its absence could lead to persons living with an intellectual disability having decisions made by family members or guardians or advocates, which has the potential to conflict with a central goal of the paradigm. On the other hand, the principle of non-interference in the market-place suggests that if this represents market-failure then the market will correct itself. Fyson and Crosby’s (2013) research, which focuses on persons living with an intellectual disability, highlights the dichotomy that exists between neoliberalism’s emphasis on a person’s independence and its inability to incorporate a person as an interdependent person. For now though, it is not possible to suggest an exact trajectory of consequences that might eventuate for persons living with an intellectual disability as the Scheme continues to evolve and is being implemented nationally. It is possible, nonetheless, to relate the structure of the NDIS to Goffman’s work (1963, 1991) and explore whether the NDIS represents a contemporary and more nuanced form of a total institution. As a new paradigm, it is appropriate to assess whether the NDIS will shift its new modus operandi in ways that surmount institutional practices and realize its aspiration to provide the “care and support [persons with disabilities] need, based on their individual support needs, goals and aspirations” (Productivity Commission, 2017, p. 3). Recall earlier (p. XXX) I highlighted four features that Goffman argues are the central tenants of total institution. The first characteristic refers to how a person living with an intellectual disability actually lives his/her life and whether s/he is subject to a single authority. In the 1960s, this took the form of persons living together in congregate care that typically included a few buildings at one geographic location on the periphery of an urban setting. Typically, these institutions were under the control of a single authority, either the

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state, or a religious or other benevolent organization. The persons living with an intellectual disability who lived in this type of housing shared their lives in close proximity with other persons living with an intellectual disability and each person lacked control, choice, personal individuality and opportunities to make decisions (Goffman, 1991). Social institutions, for example, public administration and the labour market, will always respond to the social, political and economic changes in any society and Jamrozik (2001) notes the changes that have extended across Australian society since the 1960s. These include changes to demography, cultural and ethical diversity, the family, employment, income distribution, and education and health (pp. 83–103). The shifts across society also include a change to structures that serve to “legitimize the rationality of the system” (Jamrozik, 2001, p. 280). It is of no surprise, then, that the physical environment for persons living with an intellectual disability will progress to other forms of living. Indeed, an observer will also expect to find more diverse organizations in service delivery in an open economic market-place; these are simply the signs of modernity and also the success of globalization. Nonetheless, it will be useful to examine whether a single authority dominates the behaviour of these organizations and the effect this could have on the well-being of persons living with an intellectual disability. In Australia, for a person with an intellectual disability to be eligible for a support plan that articulates “reasonable and necessary” (Productivity Commission, 2017, p. 3) needs and support requirements, s/he must be registered with the National Disability Insurance Agency (NDIA). This is the government authority that is responsible for authorizing support plans that make support available to persons living with an intellectual disability. Thus, it is possible to argue that all persons with an intellectual disability are under and subject to a single authority, since each person who is registered and eligible is reliant on the NDIA to assess their “wellbeing, independence, social and economic participation, community connections, developing and maintaining relationships [and experience] choice and control over decisions affecting [their] life” (Disability Care, 2013, p. 5). A support plan is developed through a planning process and the recent Productivity Commission Report (2017) articulated the

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significant systemic issues associated with this process (pp.  189–210). The central findings of the report on personal planning include: • • • •

The planning process is not operating well; There are concerns: the process is rushed; There was a reliance on phone planning; A lack of clear and transparent information for persons to make choices and decisions; • The process was not inclusive and overlooked the needs of persons living with an intellectual disability in particular; and • The scheme did not address language and cultural barriers.

(2017, pp. 200–210) The process appears, on the whole, to have taken precedence over the individual personal needs and the life circumstances of the person. This is troubling since it appears participants’ personal goals were minimized, planners had limited knowledge of the nature of disability and subsequent communication skills (pp.  214–220), and the planning process was itself poorly planned (Productivity Commission, 2017, p.  213). Goffman (1991, pp. 169–170) offers cogent insight and argues that organizations validate the personal identity of the persons who participate or use the service, that is, persons living with an intellectual disability, through the “expected activity” of employees. The possible identity being validated in this process is contradictory to the values of the CRPD and neoliberalism, as the person’s individuality, choice and self-­determination appear to be minimized. Nonetheless, the intent of the planning process is clear: persons living with an intellectual disability will experience better lives as a participant of the National Disability Insurance Scheme. There are certainly narratives that attest to how persons’ lives have improved and narratives of persons whose lives have yet to change or to be improved. The planning process rhetoric is that of “person-centered” planning, a suite of clinical techniques particularized to a person’s life experiences to provide a realistic understanding of his/her needs. Person-centred planning is also focused on how best to arrange supports that provide opportunities for the person to fulfil his/her aspirations and personal goals

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(Beadle-Brown, 2006; Mansell & Beadle-Brown, 2004). There is evidence available that person-centred planning can contribute to positive outcomes, for instance, Robertson et al.’s (2006) research revealed positive outcomes in specific quality-of-life domains. However, their findings also demonstrated zero influence on “inclusive social networks” (Robertson et  al., 2005, 2006; Robertson & Emerson, 2007). These characteristics that Roberson and Emerson (2007) identified as: • Weakness in planning • Quality and meeting outcomes include restricted range of personal goals • Restriction on long-term focus • Inadequate plan preparation • Lack of goal clarity • Disconnect between a person’s actual preferred needs and actualization of preference These findings are remarkably similar to the findings from the Productivity Commission (2017) review of the National Disability Insurance Scheme (NDIS) planning process. I suggest this experience of person-centred planning leads to it becoming a “self-referential concept” (Luhmann, 1986, p.  44) rather than a reality. This term was coined by Luhmann who argues that once a concept or theory becomes part of a paradigm, all you have to do is to refer to the concept rather than move it to action. It is as if, once you refer to it, the concept is then actualized; that is, the person-centred plan is implemented! Indeed, the way it has been implemented also challenges the notion that it is centred on persons qua persons and a positive ontology of disability. As we noted in Chap. 1, a focus on person values the whole being: embodiment, subjectivity, and how s/he acts, that is, a person’s dignity as a human person and his/her autonomy. It also considers persons as persons in relation to each other. The findings from the Productivity Commission reveal the limited attention given to the uniqueness of each person and to developing a lifestyle plan that will enable his/her personal flourishing. Moreover, it challenges Kristeva and Herman’s (2010) and Kristeva’s (2013) positive ontology of disability; as a process what it seems

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to maintain is a lack of attention and due recognition of persons living with an intellectual disability as intrinsically valued social and political subjects. Accordingly, I suggest they reinforce Goffman’s observation that a conflict exists in the staff’s capacity to exercise their duties “between humane standards on the one hand and institutional efficiency on the other” (1991, p. 76). This form of practice contributes to the lives of persons living with an intellectual disability being subject to the authority of a single entity, though their lives may be lived across a number of geographical locations. It also fails to meet the aspirations and objectives inherent in the scheme for many persons living with an intellectual disability. I propose that the failure to implement a robust personal planning process is a form of paternalism and yet, as human beings, we are closely related to each other and our shared humanity. It might also support North and Fiske (2014) and Cuddy et al.’s (2009) research that reveals that persons living with an intellectual disability are expected to demonstrate passivity and comply with directions and request from persons living without an intellectual disability. Further research could be conducted to ascertain how extensive this authority prevails in daily rhythms of life across these geographic locations for persons living with an intellectual disability. The academic discourse on the implementation and outcomes of the Australia National Disability Insurance Scheme is developing as the roll-­ out progresses nationally. The primary focus in the current discourse centres on meta-analysis, that is, costs, efficiency and governance, rather than the actual lives of persons living with an intellectual disability. There are, however, narratives emerging that indicate the Scheme is positive for some persons (e.g., NDIS, 2018) and has limitations for other persons (Productivity Commission, 2017, p.  207). The Scheme was trialled in 2013 and implemented in 2014, and thus, even if longitudinal studies were initiated at that time, reliable evidence such as patterns of the quality and scope of supports, costs, numbers and characteristics of persons living with an intellectual disability would only be emerging now with tentative conclusions being hypothesized. In the absence of such data, what might indicate whether the system will meet its objectives? If persons living with an intellectual disability are experiencing improved

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well-­being, better options in education, employment, independent living, community participation and efficiency in government operations, what new initiatives are emanating from the innovation the NDIS is designed to encourage? The peak employer body for Disability Services in Australia, National Disability Services, produced a state-of-the-sector report (NDS, 2017) following a survey of their members about their experiences of the NDIS. The findings from employers include concerns from their membership regarding the following items: • Low prices for the provision of National Disability Insurance Scheme services • The financial cost of changes for employers under the NDIS • The demand for services outstripping supply • 60% worried about their ability to adjust to changes resulting from the Scheme • Poor quality National Disability Insurance Scheme support plans The employers express legitimate concerns; from the perspective of persons living with an intellectual disability, a troubling finding is the difficulty employers are encountering in adjusting to the Scheme changes and meeting the objectives despite their overall commitment to the NDIS (Productivity Commission, 2017, p. 8). This suggests that innovation in service provision is unable to be pursued in the way intended by the NDIS. The report does not indicate that persons living with an intellectual disability are experiencing improved well-being nor does it imply their lives are impoverished. Moreover, it does not appear as if employers are able to improve the education and employment opportunities for direct support personnel, or offer diverse and creative living arrangements, or improve community participation, given the financial costs associated with the Scheme. Employers have found that the transaction costs of moving to the new systems imposed by the Scheme to be erroneous and financially expensive. A report prepared by Social Policy Research Centre (2017) following consultation with employees who are working under the National Disability Insurance Scheme offers some insights in the difficulties from

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a support personnel perspective. Fifteen hundred persons with extensive experience in working with persons with disabilities from across Australia responded to the survey and almost 55% of respondents were working in roll-out areas. The survey findings include: • • • •

24% agreed it was positive for participants; 14.6% agreed that families were happy with the Scheme; 15.7% agreed it was a better paradigm; 55.9% reported they did not have enough time to do their work under the NDIS; • 72.2% worried about the future of their job; and • 52.6% disagreed that NDIS has been a positive change for them as a worker.

(Social Policy Research Centre, 2017, p. 5)

Participants and/or family members may contest the perceived satisfaction findings by employees and thus any analysis by a third party that validates or refutes these findings may be futile. What might be more significant findings are the employee perceptions of working under the NDIS. The summary findings indicate that “on all measures and in each jurisdiction, most [persons] report the NDIS as having adverse impacts upon their working lives” (2017, p. 21). An inference can be made from these findings that, for persons living with an intellectual disability, well-­ being and personal flourishing may not be substantially increased, nor are persons experiencing increased educational and work opportunities or more occasions to participate in their local communities. These perceptions should be read in respect to international research on personnel’s perception of employer working priorities. For example, Herman, Embregts, Hendriks and Frielink’s (2018) study assessed the effects of commercialism and market forces in direct paid personnel to offer personal support to persons living with the experience of an intellectual disability. The results revealed that care staff perceive the precedence and priority of efficient and effective business or managerial operations over direct support posed a compromise to the quality of care which personnel could offer the persons living with the experience of an intellectual disability.

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I propose that since the introduction of the National Disability Insurance Scheme (NDIS), there has been minimal change to the status quo in the disability services system. The prevalence rate for the incidence of disability has remained stable over time with approximately 18.3% of Australians reporting having a disability. Almost 1 in 3 of these persons live with a profound or severe disability and approximately 3 in 5 persons need assistance with at least one core activity in daily life (Australian Bureau of Statistics, 2017). Other significant points to note are that personal life experiences have not significantly changed (except in the last point, below) from 2012–2015: • Unemployment rates for persons living with a disability were consistent at 10% and this compares to 5.3% for persons without a disability; • Approximately 82.8% of persons registered as living with a profound limitation personal income is attributable to a government pension; • For employed persons living with a disability, aged 15–64 years, in 2015, the average weekly wage was $465, which compares to $950 for persons living without a disability; and • The proportion of persons living with a disability aged 15–64 years who completed Year 12 or equivalent increased from 35.6% in 2012 to 41% in 2015. (Australia Bureau of Statistics, 2017)

It is good news that an increased number of young persons living with an intellectual disability are completing Year 12. However, the data does not indicate if the young persons secure their High School Certificate or equivalent, or whether persons are in education to secure access to income support benefits. Indeed, if the family or living circumstances were such that the person was required to attend school since s/he may not have been able to stay in his/her own home during these hours, then the education service is not serving its aim and acting more as an adolescent minding service. There are some significant changes that occurred in the organizational landscape from 2014 to 2016 that appear to contribute to reducing the number of Service Providers and concentrating their power in the domain of few organizations:

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• The number of charities decreased from 55,471 to 52,817; • The proportion of charities reporting “social services” as their main activity grew from 6.3% to 10.8%; • The number of charities employing only paid staff increased by 6.4%; and • Income growth was concentrated among the largest (that is, top 1%) of charities.

(Ramia, Powell, Cortis & Marjolin, 2018)

Notwithstanding these changes, the dominant model of accommodation support appears to have remained constant for persons living with an intellectual disability, that is, group homes. There are significant variations to the archetypal group home and a robust study to explain how personal lives are actually lived can be gleaned from Clement and Bigby (2010). There is a depth of research in the Australian context that focuses on the lives of persons living with an intellectual disability in group homes and the staff who offer support. These include Anderson and Bigby (2016), Bigby et al. (2017), Quilliam, Bigby and Douglas (2017), and Young, Sigafiss, Ashman and Grevall (1998). Clement and Bigby (2010) completed a three-and-a-half year ethnographic project that focused on persons living with an intellectual disability after leaving a total institution in Australia and moving to group homes. The researchers define a group home as “accommodation for between four and six persons where extensive or pervasive paid staff is provided” (Clement & Bigby, 2010, p. 15) to persons living with an intellectual disability. The research on group home living highlights the variables that influence the lives of persons living with an intellectual disability, the support personnel and the structure of the organizations. Their research (2008, 2010) concludes that while the physical presence of persons living with an intellectual disability has increased, the degree of community integration, that is, community participation and meaningful activity, remains low. It is generally agreed and confirmed through evidence that quality of life is improved in smaller living environments than congregate care (Kozma, Mansell & Beadle-Brown, 2009; Mansell & Beadle-Brown, 2009). Quilter-Pinner (2019) completed a review in the United Kingdom on the drivers that contribute to good quality social care. Good quality social care is defined as “accessible, personal, relational, preventative

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joined up and safe” (p. 9) support to persons. The research indicates that drivers to delivering good quality social care include: funding, workforce and the type of legal entity (Service Provider) delivering the care. Naturally, funding models need to be adequate and include both financial and physical resources to be allocated to developing a competent and adequately remunerated workforce. The survey also found evidence that private residential care providers delivered lower quality care than voluntary and state providers. Some of the possible reasons for this included: a casual workforce, financial stability and larger care settings. Nevertheless, actual personal outcomes will always be subject to a number of variables that include age profile, adaptive behaviour, geographic location and degree of complex needs. Failure to attend to the particular individual’s needs and life circumstances will contribute to poor outcomes and well-being (Endermann, 2013; Petry, Maes & Vlaskamp, 2009). Bigby and Beadle-Brown (2016) reviewed literature in a range of supported accommodation agencies to assess what interventions are effective in promoting well-being and personal outcomes. The research findings indicate that “what influences the quality-of-life outcomes” remain limited and “little research” has been conducted on well-­ being (p.198). Nevertheless, some findings on the positive influences on quality of life outcomes include: • • • • •

The use of active support Practice leadership Positive cultures Targeted human resource policy and practice Adequate resources and small home like environments

If the models of supported accommodation remain unchanged, where employers are struggling to initiate changes and employees are grappling with competing work demands, it is likely, then, that well-being and quality of life outcomes will remain weak at best or, at worst, deteriorate. One of Goffman’s key characteristics in defining if a person is part of a total institution includes whether his/her life being shared with a large number of persons with a similar personal identity and who are supported, without distinction, to live the same rhythm of life (1991, p. 17).

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The varied iterations of deinstitutionalization policies in Australia, including the National Disability Insurance Scheme, have shaped the lives of persons living with an intellectual disability. The impact of these policies acts as an alternative set of building blocks that create negative outcomes. That is, while policies are intended to promote social inclusion, in fact they construct substitute institutional bricks and mortar through prescribed service provisions, work-orientated cultures and practices, such as regulation that only serve the economic and social ideological framework. The foremost issue is the neoliberal doctrine of individualism rather than interdependency or community (Clegg, 2000; Reinders, 2002). The second significant aspect is finding creative and imaginative dimensions that enable persons living with an intellectual disability to experience well-being, personal flourishing and meet their “reasonable and necessary” (Productivity Commission, 2017, p. 3) goals and aspirations. The focus on group accommodation, whether it is through duplex or larger accommodation options, will, potentially, mitigate authentic living spaces that engage persons living with an intellectual disability to develop feelings of attachment and belonging to their local communities. The decrease in the number of Disability Service Providers could also contribute to a power imbalance between persons living with an intellectual disability who use the service and the persons who manage and control service delivery. Goggin and Newell (2005, pp.  121–140) propose a shared governance model that might ameliorate power differences and support self-determination. This model has yet to be engaged and adopted by Disability Service Providers in Australia. Living in shared living spaces and being underemployed (recall that for 82.8% of persons living with a profound disability their only source of income is a government pension) imply that a person’s life is lived according to a fixed cycle schedule that omits flexibility and will be predetermined by the organization. This way of living meets another characteristic identified by Goffman (1991, p. 17) of a total institution. Data linkage can be defined as a process that permits collected information to be aggregated and used to improve understanding of particulars under examination. There are privacy issues associated with the use of any data and institutions in Australia who collect data in disability services uphold strict privacy standards. From the available data on persons living with an

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intellectual disability who are participants in the NDIS (AIHW, 2018; Productivity Commission, 2017), it was not possible to determine the number of persons living with an intellectual disability who are supported either in an accommodation setting or a day-time community access space. Accordingly, it is impossible to know the number of persons who share an accommodation and day-time community space. Clement and Bigby (2010, pp. 39–72) present data and a comprehensive account of the lives of a few Australians (16 persons) who live with an intellectual disability. Although the number of persons in the study is limited, the narrative has, I would argue, currency even for persons funded through the NDIS and living in supported accommodation. These scholars revealed that residents’ days are structured around relatively fixed times for “food and drink” (p. 46), that “staff had dominant roles” (p. 51) in the households and “community-based activities took the form of group activities” (p.  60). As the researchers noted, it is a matter of opinion whether the snapshot of the daily life they described is ordinary. However, in one dimension, it satisfies the criteria of a total institution, and if lifestyles for persons have not changed significantly with the introduction of the NDIS, then institutional practices or “asylums without walls” (Dear & Welch, 1987, p. 6) continue to exist. It is the work of further research to revisit the lives of these persons and offer additional narratives of persons living with an intellectual disability to demonstrate how persons are living more integrative lifestyles. Goffman (1991) also argues that when combined, the aggregate social arrangements of an institution are focused on meeting the goals of the institution rather than personal flourishing. This, indeed, is a radical and confronting claim. Nonetheless, Goffman’s proposition has merit since his research focuses on the real and genuine lives of real persons and his corpus also draws upon the actual lives of persons who live their lives in total institutions. For instance, his work details the lives of persons who were part of the armed forces, prisons and religious life. While Goffman’s claim might be judged as deserving of worth, some persons might attribute it to the fact that persons living with an intellectual disability lived their lives as part of a total institution and persons’ lives are different today. This view can be contested: Taylor (1994) notes that often persons living with a disability do not feel welcomed in their local communities.

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Warnock (2005), who held a key role in introducing mainstreaming schooling for children living with disabilities in the UK, believes in retrospect that it was “possibly the most disastrous legacy of the 1978 report” (p. 22). Gibilsco (2016), a man who lives with a degenerative physical disability, also argues from his personal experience of receiving support that “Service Providers of not-for-profit services seem to want to standardize disability to make it more amenable to organizational processes, which can then distribute work tasks according to an economically-­ orientated calculus” (pp. 297–298). Stewart’s (2016) research argues the “welfare state” (p. 1) in the United Kingdom has been demolished for persons living with all forms of a disability and the new assessment processes and reduced public expenditure decreases persons’ ability to experience well-being and live fulfilled lives. Yates’ (2005) interview with persons living with an intellectual disability in a group home environment reveals one dimension where persons are “members of a category that distinguishes their personhood from “normal” others and creates specific institutional interactions into their lives” (p. 72). The clarion mantra, “nothing about us, without us” (Charlton, 1998; Stone, 1997) has functioned as a legislative and human raison d’être rationale to include persons living with the experience of disability in exceeding and influencing policy, practices and research concerning disability. The principle of self-determination underscoring this call has enabled some groups of persons living with the experience of disability to shape their relationships with statutory and non-statutory agencies. Waldschmidt, Karacic, Andreas and Dins (2015) have traced the 30-year history of how this human rights mantra (“nothing about us, without us”) has been implemented in European societies and discovered that there are worldwide agencies for persons with disabilities that “are prominent players in disability policies” (p. 134). The author’s note that debates continue on who represents the interests of persons living with a disability, and their evidence from nine European nations indicate “that organizational structures are heterogeneous and representative practices diverge greatly” (p. 134). One gap that appears to be present internationally concerns how persons living with an intellectual disability represent themselves. The nature of intellectual disability presents a number of challenges including an over-reliance on written communication, limited use of

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augmentative communication systems and engaging with one person or group of persons may not necessarily represent an all-encompassing view. This should not be surprising since engaging with any group of citizens in any nation is challenging. However, Carey (2009) provides some useful “directions” (p. 222) for policymakers and others who require support, including the use of self-advocacy, building community capacity and social capital and honouring the human rights of persons (pp. 222–228).

4.5 Values in Neoliberal Societies In Need for Strangers, Ignatieff (1994) notes the arguments between neoliberalism and its alternative draw thick lines for persons and groups along partisan ideology that often focus on how much revenue there is to spend and how to collect it. Although there is consensus from both groups that income, food, shelter, and medical care are essential constituents, Ignatieff notes that “what almost never gets asked is whether [the recipients of the support] might need something more than means of mere survival” (p.11). This “something more” is, I suggest, an alternative set of philosophical values, since the emphasis of the current values is only on addressing the person’s basic needs. These needs are of course necessary. However, they will not meet the goals of social inclusion, since they create social and political arrangements that fail to take seriously the participation, economic, relational and social needs of persons living with an intellectual disability (Milner & Kelly, 2009). Neoliberalism refers to a hybrid label for a set of economic and political doctrines that influence politicians in western governments in how they govern their nations. Neoliberalism permits pluralism and tolerance of political views although it rejects the prior dominant form of economic (Keynesian) ideology. Public Choice theory (Mitchell, 1988; Self, 1993), agency theory (Simon, 1991; Trebilcock, 1995), transaction-cost economics (Petersen, 1993; Williamson, 1985), managerialism and the new public management (Aucoin, 1990; Caiden, 1988) are among the ideologies that incorporate neoliberalism. The influence these theories have on western nations is considerable. They have changed the language

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of policy discourse and altered the ways that public management issues are explained, interpreted and discussed (Boston, Martin, Pallot & Walsh, 1996). The philosophical values that determine these neoliberal doctrines include a focus on each person as an individual, the belief that persons are independent, the understanding that persons have choices and the right to control how they live their lives and the idea that persons are motivated by their pursuit of individual good. These, then, are the philosophical values that determine the international public social policy on social inclusion. These philosophical values contradict personalist philosophy and thus fail to acknowledge the reality of the actual lives and experiences of persons living with an intellectual disability. The independence of any person living with a disability should, as Shakespeare (2000) argues, be considered as a human right and any person’s need for physical or social assistance does not diminish his/her independence. Nonetheless, the concept of “right” is often used as if there is a shared understanding about how this term is understood and used (Clegg, 2000). A person can have rights and yet, unless this right or set of rights is respectfully held and supported by all members and institutions in society, it is a charlatan. The value of Wolfensberger’s (1983) social role valorization and Reinders’ (1997) approach is their focus on attracting members of the wider community to engage with persons living with an intellectual disability, and their focus is thus that persons living with an intellectual disability become a someone: a real person with feelings, desires and a sense of self. Therefore, the issue is not on ascribing rights as if it is some form of divine authority and something persons should be grateful for being offered. Rather, when rights are rights, they are focused on creating enabling conditions to support independence and attributing inherent personal value as a fundamental mark of humanity and human dignity. There is, on the one hand, a value placed on each person as an independent person who freely acts and makes decisions about how to live his/her life. However, typically in the public policy sphere, there is also a belief that there is a “community of persons” available to create personal relationships with persons living with an intellectual disability. This is a misinformed belief. Research by scholars, for instance, Clement and Bigby (2008), Emerson et al. (2005), Emerson and McVilly (2004), and

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Forester-Jones et al. (2006), contest this view. It is true that as persons we do not live in a vacuum and as persons we are independent, that is, we make decisions independently; however, we more often than not make a decision after we have discussed it with another person. Scholars in the feminist tradition of ‘care’ ethics and now in disability studies (e.g., Carey, 2009; Kittay, 1999, 2011; Shakespeare, 2000) have something valuable to contribute to this notion of dependency. Kittay’s argument is that interdependence commences with dependency; that is, the care of an infant ends in old age with a person who is frail. The infant may develop into a person who can respond in kind, a person upon whom another can be dependent and whose sustaining needs shape the person as interdependent upon another person (1999, p. xii). Similarly, as Carey (2009) presents it, “dependence is part of the human condition; we are not autonomous but rather interconnected, relational beings” (p.  18). I would suggest, therefore, that, in light of the limitations of the policies of social exclusion experienced by persons living with an intellectual disability, the value ascribed to “independence” be replaced by “interdependence” in the international policy arena. Reinders (2002) notices the positive changes that have occurred for persons living with an intellectual disability in the areas of personal decision-­making and the ability for persons to determine and exercise control over their personal lives. Nonetheless, there are many persons who may not be able to exercise their choices or, indeed, be presented with options, and the reasons for this are multifaceted (Reinders, 2002, p. 1). The idea of being and having friends and that being part of leading a good life is as ancient as Plato (trans. Saunders, 1987) and Aristotle (trans. Irwin, 1999) who argues “who would choose to live without friends even if he had all other goods” (p. 1155a5). However, friends, that is persons who are freely choosing to spend time with each other socially, sharing emotional intimacies and being part of each other’s lives, are absent from persons living with an intellectual disability (Emerson & McVilly, 2004; Verdonschot, deWhitte, Reichrath, Buntinx & Curfis, 2009; McLachlan, Gilfilan & Gordon, 2013). It is no wonder that if these bonds can’t be cemented at the personal level we find an absence of civil relationships in the cultural sphere. By civic, I mean relationships that move beyond a person being a consumer or a recipient of care,

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meaning relationships that include persons volunteering in community and/or recreational programs in their localities. Paying attention to both forms of relationship not only honours a person’s rights, it offers respect, dignity and builds social capital between persons.

4.6 Conclusion Neoliberalism and the policies of social inclusion for persons living with an intellectual disability follow from philosophical principles inherent in liberal democracies, which are underpinned by a philosophy of inclusion. Democracy is taken as being rule of person, for persons, where ‘person’ is read as all human persons. One reason for this belief could emanate and react from the exclusion of many persons (for example, women, persons of colour, peasants, slaves) over the last centuries. Liberal democracies offer the possibility of realizing maximum social inclusion policies in the history of humankind (Taylor, 1994, pp. 124–145). However, practices of neoliberalism appear to push persons living with the experience of an intellectual disability towards exclusion and one form of this practice is revealed and institutionalized through decision-making practices made by persons living without the experience of an intellectual disability. These decisions are often made without consulting with persons living with an intellectual disability. That is, while democracy is supposed to establish processes and institutions that take joint decision-making through either consensus or on a majority basis, the persons in key roles may not imagine persons living with an intellectual disability as equal and autonomous agents in these processes. Thus, designing and implementing social policies of inclusion might facilitate decision-making for some persons and policymakers, but it fails to be democratic for other citizens and neither is it democratically legitimate. One possible strategy to remediate this situation is to canvass persons living with an intellectual disability individually and in groups to deliberate and decide together on how such policies might be implemented and structure cultural practices that enable social and economic inclusion. This process will always be a work in progress since society and culture are continually facing new questions.

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The praxis or findings of the social practices in this chapter reveal that despite the differentiated economic environments, in western societies, there are commonalities to their social policies of inclusion towards persons living with the experience of an intellectual disability. First, there has been a move away from congregate and geographically isolated locations and institutional structures toward smaller community living options for persons living with an intellectual disability. Second, the current prevalent rhetoric on person-centred planning (PCP) is good news to many persons; however, the implementation appears to be deficient and lacking integrity. Third, the lives of the majority of persons living with an intellectual disability are increasingly institutionalized since the locus of power and control remain with the government, family members and service providers. The economic and political ideology used to fund and administer international public policies on social inclusion overlook core philosophical values such as interdependency and the idea of a common good. Combined, these neoliberal values minimize the ability of persons living with an intellectual disability to engage in meaningful ways with local communities and society in general.

References Anderson, S., & Bigby, C. (2016). Empowering people with intellectual disability to challenge stigma. In K. Scior & S. Werner (Eds.), Intellectual disability and stigma: Stepping out from the margins. (pp. 165–177). UK: Palgrave Macm. Aristotle. (1999). Nicomachean ethics (2nd edn., T. Irwin, Trans.). Indianapolis: Hackett Publishing Co. Aucoin, P. (1990). Administrative reform in public management: Paradigms, principles, paradoxes and pendulums. Governance, 3, 115–137. https://doi. org/10.1111/j.1468-0491.1990.tb00111.x Australian Bureau of Statistics (ABS). (2017). Catalogue No. 4430.0 Disability, ageing and careers, Australia: A Summary of findings 2015. Retrieved from http://www.abs.gov.au/Ausstats/[email protected]/0/0CD3AF801A5AF108CA2580 4F000F61FB?OpenDocument. Australian Institute of Health and Welfare. (2018). Disability support services: Services provided under the National Disability Agreement 2016–17 (Bulletin

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5 Social Inclusion: Culture and Disability

5.1 Introduction This chapter explores how culture interacts with the policies of social inclusion and it suggests a rationale to explain this phenomenon. The previous chapter explained how the dominance of neoliberalism philosophical values inhibits institutions such as education and personal support systems from enabling persons living with an intellectual disability to exercise control and choice over their lives and represent their interests. This chapter holds that culture maintains a fundamental misunderstanding of intellectual disability and shows how this is preserved through Foucault’s concept of bio-power (1978). This form of cultural dominance serves to inhibit persons living with an intellectual disability to realize personal goals of social inclusion. Moving beyond normative cultural myths is a form of emancipation. This proposal, to incorporate vulnerability as a central feature of humanism, challenges the notion of a person as it is conceived in neoliberal paradigms and offers an alternative vision of human society.

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5.2 Culture The role of culture in the lives of persons living with an intellectual disability has a significant impact upon their personhood and what social, economic and political opportunities are made available. The culture that permeates western nation states does not offer persons living with an intellectual disability a valued status as a person per se, nor is the countervailing ideology sufficiently furnished to create meaningful spaces for persons living with an intellectual disability to live flourishing lives. Although the life of any person is influenced by many characteristics, for instance, primary caregivers, family members and socialization processes (Bowlby, 1967, 1973), culture includes the aggregation and interaction of these social, economic and political factors. The impact of these factors creates a milieu that sustains a culture and ideology of lack or defect and exclusion for persons living with an intellectual disability despite successive efforts by western governments to ameliorate their disability support systems. We have noted that inclusion is a key principle in funding, administrating and providing services for persons living with an intellectual disability. However, it appears to remain an elusive reality despite targeted programs designed to surmount the social, economic, political and environment barriers. Culture is a significant sociological notion and refers, although it has many meanings, in its most general form, to the sets of patterns of ideas, values, social norms and so forth that are common to particular groups of persons. Cultures offer persons an expression of their collective identity and form a significant arterial for exclusion and inclusion of persons in communities and/or societies. A distinction can also be drawn between material culture (e.g., digging sticks, mobile phones) and non-material culture, which is referred to as ideas or beliefs and social practices. I am concerned with this latter aspect of culture and what knowledge, beliefs and philosophical values underpin our understating of intellectual disability, or, in other words, the “taken-for-grantedness” (Berger & Luckmann, 1967, p. 54) of our everyday assumptions about intellectual disability, what knowledge and experience most persons have of the phenomenon and, importantly, what relational interactions most persons

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have with persons living with an intellectual disability. Culture is important for persons in the individual sphere; it is used as a boundary marker, a means of identifying with other persons to create a shared identity and establishes personal set or patterns of social practices. These practices provide a set of stated or implied assumptions and values that become absorbed in daily lives. Personal membership to a cultural group contributes to psychological well-being and the ability to pursue daily life without having to continually reflect on meaning-of-life questions and it prescribes a structure for social interactions. The knowledge, beliefs, ideas and social practices in culture are intricately connected to ideologies that incorporate persuasive economic, social, religious, political systems of ideas about the way the world is, or how it appears to persons. Ideologies can be contested, since they typically vary from actual social experience and indeed they can paint an idealized narrative; any one ideology may have different social practices. Ideologies, similar to culture, can however provide a framework that offers clarity to the world a person inhabits and a means to filter thoughts, actions and interactions. In western nations, whilst there is coherence in neoliberalism as an economic ideology, there are though typically competing ideologies across social and political spheres. For instance, the legal, social and moral status of same sex relationships is contestable in neoliberal societies. It is possible to divide ideologies on a continuum with both dominant and countervailing axes. A dominant ideology is, as the name suggests, an ideology that articulates and supports the position of one or more influential groups that enable the group to maintain its prominent role and authority. The dominant ideology permits a group of persons (e.g., professional associations, public institutions) epistemic authority, that is, the sovereignty to determine the future of different groups of persons. This hegemony and control follow from ascribing the persons as knowledgeable and skilled. A countervailing ideology is the ideology that typically challenges the dominant ideology, and in extreme cases, the challenge may be violent, although more often ideologies compete with each other for power and control through dialogues and the cultural mechanisms available to them.

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5.3 Foucault and Bio-Power A possible explanation for understanding how and why the policies of social inclusion have yet to be realized for persons living with an intellectual disability emanates from the knowledge and power inherent in western culture’s interpretation of the nature of intellectual disability. Notwithstanding the works of scholars (e.g., Goodley & Roets, 2015; Philo & Metzel, 2005; Shoultz & Ward, 1996), who are able to transcend the stereotyping and myths that exist for persons living with an intellectual disability, in the majority of cases, persons are ascribed positions and subject to the authority of persons living without an intellectual disability. I suggest this approach follows from misunderstanding intellectual disability as a phenomenon that envisages persons as non-rational beings who are incapable of decision-making, experiencing human emotions, suffering by virtue of their condition and unable to live fulfilled lives. Michel Foucault offers illuminating insights into how certain persons inhabit the world and how the social sciences can be used as a method of inquiry to improve personal well-being or flourishing. This perspective is derived from Foucault’s investigations within specific social systems of knowledge, which focuses on how certain persons act and are judged as problems and characteristically connected to power of one group of persons over another. The group of persons who control the power can also create spaces for other persons to be subjected to positions within a specific identity, and these positions then serve to perpetrate the cultural identity of a person (Foucault, 1970). This notion is also explored by other scholars, for instance Gillman, Heyman and Swan (2000) and Goodley (2010), the former highlighting that when a person has a diagnosis, it creates separate pathologies that are improvised and become the personification of a person’s identity. This results in a person engaging in relationships bounded through professional intervention and serves to preserve differential power relations between persons. In Madness and Civilisation (1989), Foucault investigates how the label of an insanity diagnosis is used to exclude persons and otherness from society and revealed the unreliable nature of psychiatric discourse. He explores how societies in Europe from the Middle Ages to the eighteenth

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century responded to persons living with a disability and how each form of intervention was judged as a humanized form of treatment, although, in reality, intervention served the state and established the power of medicine. Foucault continues this critique of medicine in The Birth of the Clinic (1994) and in The Order of Things (1970). His analysis is aimed at the human sciences, Marxism and phenomenology. The term clinic is used by Foucault as a general term and refers to the way persons are assessed and treated by those with professional status. Similar to his previous approach, he examines how these fields of knowledge emerged through the seventeenth and eighteenth centuries. In Discipline and Punish (1979), Foucault explores the prison system in France and the discourse of power and how social controls operate across prisons, in education, in workplaces and other institutions in society. He continues this theme in The History of Sexuality (1978), which was the first of a series of works that was not completed at the time of his death in 1984. In the first volume of The History of Sexuality (1978), he introduces the concept of bio-power (bio pouvoir) and uses it to refer to disciplinary power that takes charge of the two poles that regulate human life: the physical body as “a machine” (1978, p. 139) and the biological organism and population as a “species-body” (1978, p. 139). He argues from his studies of the human science that “the disciplines of the body and the regulations of the population constituted the two poles around which the organisation of power over life was deployed” (1979, p. 139). Foucault was most concerned with how this bio-power develops as an institutional framework and becomes constituted by a set of social practices. He argues: we should admit … that power produces knowledge … that power and knowledge directly imply one another; that there is no power relation without the correlative constitution of a field of knowledge; nor any knowledge that does not presuppose and constitute at the same time power relations. (1979, p. 27)

It is through the aggregate day-to-day process activities of persons that emanate from no particular individual person, which develop normality, and becomes adapted as social practices. He argues that these social

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practices are accountable for constructing persons who are acted upon, forced into different positions, albeit typically negative and lower, for the predictable and efficient conduct of societies. For Foucault, the most insidious function of power is the methodology it uses through productive constraints, that is, when it licenses persons to act in order to limit and prescribe their acts (Tremain, 2002, 2005) or as he articulates “it is a way in which certain actions modify others” (Foucault, 1978, p. 788). Moreover, bio-power has the ability to enable “a mode of action which does not act directly and immediately upon others. Instead, it acts upon their actions” (Foucault, 1978, p. 789). This subtleness of power allows power to continually create knowledge, which permits this knowledge to continuously maintain its power. Accordingly, power does not need, as in previous centuries, a coercive function since the continual cycle of knowledge-­power-knowledge sustains a status quo. Foucault argues that his objective has been, “to create a history of different modes by which, in our culture, human beings are made subject” (1978, p. 777) and he offers a tripartite “modes of objectification” (1978, p. 777) of the subject that explains this subjection. Foucault posits the first mode that objectifies subjects, while linked with the second and independent of the third, permits subjects to be studied to enhance a body of knowledge and to be taught specific knowledge and/or skills. In The Order of Things (1970), he demonstrates that the rhythms of life, labour and language were structured as disciplines and maintained relevant despite the social, economic and political transformational changes that occurred throughout society over the centuries. Foucault terms the second dimension to his corpus on the subject as “dividing practices” (1978, p. 777). In this sphere, subjects are treated as mere entities; indeed, subjects follow from a binary classification that confers different labels “the mad and the sane, the sick and the healthy” (1978, p. 778). The final phase of his work can be termed “subjectification” (Rainbow, 1997, p. 11). This refers to the “way a human being turns him-herself into a subject” (Foucault, 1978, p. 778). Foucault is concerned with how a subject “initiates self-formation” (Rainbow, 1997, p. 11), that is, while this process is complex, it permits persons to act in ways that persons come to understand their autonomy is subject to an external authority often (Foucault, 1978).

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In his theories on social sciences, Foucault urged scholars to continually critically reflect on current realities with the intention of initiating change into what is considered self-evident natural truths. Accordingly, Foucault’s corpus has been used by many scholars (e.g., Carlson, 2010; Tremain, 2002) to critically assess the social practices used in administering, funding and providing support to persons living with an intellectual disability. I suggest this advice can be applied to the common misunderstandings of the nature of intellectual disability as a phenomenon that envisages persons as non-rational beings incapable of decision-making, experiencing human emotions, suffering by virtue of their condition and being unable to live fulfilled lives. Foucault’s bio-power is key to challenging this misunderstanding, which has been addressed in the works of many persons although some are those without the experience of an intellectual disability. The works of Amado (1993), Berube (1996), Carey (2009), Carlson (2010), De Vinck (1990), Kingsley and Levitz (1994), Mosteller (1982), Nouwen (1997), Reinders (2008), and Vanier (1998) challenge the dominant narrative of intellectual disability. Carey’s (2009) contribution to the civil rights of persons living with an intellectual disability demonstrates the value of the self-advocacy movement in the United States. Her suggestions that we need to “build micro and macro structures” (2009, p. 288) that support, empower and embed citizens in the fabric of local communities and political life have merit and, if taken seriously by neoliberalism, could open spaces for social inclusion. Edwards’ (2003) argument also has merit: ‘Is it possible to lead a good life when one has an ID?” We can only answer ‘no’ if we are confident that and ID precludes the development of deep personal relationships, accomplishments, moral integrity, autonomy and other credible ingredients of a good human life. I suspect that we cannot answer ‘no’ with a great deal of confidence. (pp. 530–531)

Consider the notion that persons living with an intellectual disability by virtue of being are suffering since disability is the source of negative experiences (Kristeva & Herman, 2010; Reinders, 2000). This concept may permeate a person’s life since the medical model’s account of disability still influences western nations’ notion of disability as deficit and,

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combined with the charitable narrative that is used to evoke a person’s identity, envisages persons as passive recipients of public expenditure (Goggin & Newell, 2005; Shakespeare, 1994). Many persons living with a disability will contest this view, for instance, Davis (1989). Family members (De Vinck, 1990) will also challenge this notion. The literature of persons living with an intellectual disability as authors is less well represented. Nonetheless, persons living with the experience of an intellectual disability have also disagreed with this image of suffering (e.g., Burke & MacDonald, 1991; Kingsley & Levitz, 1994). An ardent critic of the pervasiveness of this notion of suffering is Hans Reinders (2000) who, following research from a parent’s perspective, considers and evaluates the nature of life for a person living with an intellectual disability (2000, pp. 159–171). He challenges the view held by some philosophers and medical practitioners (Singer, 1994; Singer & Kuhse, 1988) that to accept intellectual disability qua intellectual disability is to accept suffering. It is true that the notion of suffering is culturally abhorrent and contrary to the ideals of living in a neoliberal society (Mill, 1978) and suffering per se is not something that most persons would wish for themselves or others. However, the argument, as Reinders notes (2000, pp. 162–164), is that there is a presumption the persons living with an intellectual disability suffer simply by living their lives or through their being. This is a problem of “judgment” (2000, p. 162). We noted earlier that Frankl (1961, p.  122) and Macmurray (1961, p.  63) challenge us to freely choose our responses rather than be determined by our judgements. Reinders (2000) also takes this approach after analysing family interactions of persons with the lived experience of intellectual disability. One of the most recent examples that suggests that persons living with an intellectual disability share the same social aspirations as many other persons comes from an organization in the United Kingdom called ‘Stay-Up Late’ (Burnett, 2018). A popular local band regularly noticed that many of their fans were leaving the gig at 9:00 pm. When they made inquiries, they discovered that their fans were persons living with an intellectual disability who only left because their support staff finished work at 10:00 pm and the latter needed to finish their work shift at the former’s home. Following this discovery, an organization now known as

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Gig Buddies emerged (Burnett, 2018). Gig Buddies matches’ persons with and without an intellectual disability to spend leisure time together, primarily focused on attending music concerts. The project, which is led by persons with an intellectual disability (Gig Buddies, 2018), seeks to inspire genuine connections between persons who share mutual leisure interests. This is one of the key characteristics of friendship (e.g., Aristotle, trans. Irwin, 1999, 1157a; Montaigne, 2001). Gig Buddies has expanded to Australia and it holds open, new and exciting possibilities if it can remain faithful to its initiative of enabling persons living with an intellectual disability to (a) lead the process and (b) connect and stay connected with other persons who are outside formal paid roles and who share particular interests. There are a number of choices open to a person who is in a paid support role with a person living with an intellectual disability. As practitioners, a person can maintain a status quo or conform to the dominant ideology. Alternatively, a person could follow an idea from Immanuel Kant (1983), who suggested that persons can become sapere aude, that is, “dare to be discern” or “dare to be wise” about how you act (p. 41). I propose that a critical dimension to any paid disability support practitioner is (a) furthering our personal understanding of the nature of intellectual disability; (b) critically assessing the prescribed truths; (c) acknowledging each human person’s need to create and sustain meaningful personal relationships with other persons of different abilities, genders; and (d) analysing your own personal interactions and practices. A key aspect of this book is a defence and furthering of Kant’s argument that we need all persons who hold an interest in the flourishing and well-­ being of persons living with the experience of an intellectual disability to dare to apply their own intelligence and lived experiences rather than more-or-less unreflective acceptance of the values inherent in neoliberal societies that limit human personal flourishing. As a society, and for most persons, our cultural attitudes towards disability and, in particular, intellectual disability, call for a fundamental change. The notion of portraying intellectual disability as suffering and catastrophe fails to represent persons justly and creates conditions that weaken the position of the bio-­ psychosocial approach (World Health Organisation, 2001) and as persons who have “social competence” (Paterson & Hughes, 2010, p. 607). The

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key characteristics of western policies of social inclusion centre on enabling persons living with an intellectual disability to exercise choice and control over important aspects of their lives. One chief component is personal assistance. The Centre for Excellence in Personal Assistance (ECEPA) has designed a bottom-up approach of personal assistance, which promotes and prioritizes social practices and personal experiences of persons living with an intellectual disability over abstract and impersonal hypotheses (European Foundation Centre, 2010). EPCEA’s notion of personal assistance embraces an intricate network of complementing activities incorporating needs, assessment procedures, mixed and responsive funding and accountability arrangements, appeals options and significant peer training and counselling. This approach is congruent with personalism and Kristeva’s theory of disability, with the human person as an interdependent that lives and participates in multi-layer social, economic and political landscapes.

5.4 Culture and Inclusion There is a regrettable (and some persons may argue, continuing) history regarding the social, economic and political lives of persons living with an intellectual disability inherited by current neoliberal societies. Many scholars have offered detailed discourses on how societies have acted, thought and behaved towards persons living with a disability, (e.g., Cocks, 1989; Edgerton, 1967; Oliver, 1996; Shearer, 1981; Simmons, 1978; Striker, 1997; Wolfensberger, 1975). The dominant themes that emerge from these frameworks are: • Specialized custodial institutions for persons • Minimum levels of community presence • Few, if any, meaningful friendships between persons living with and persons living without an intellectual disability • The dominance of a medical model of care Following the Second World War, an alternative hypothesis developed that proposed a humane and alternative vision of persons living with an

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intellectual disability. Bank-Mikkelson (1969), Nirje (1969, 1985) and President’s Committee on Mental Retardation (1977) developed the basis of a scientific theory that could be universalized and was coherent with social and behavioural sciences. Particularly in the political sphere, the implications are that persons living with an intellectual disability are equal to citizens living without disabilities and in the social realm, persons with disabilities will live lives akin to other nationals in their local community and wider society. Unfortunately, as we have noted in previous chapters, the reality is different: persons living with an intellectual disability continue to live, on the whole, on the margins of society. Although there are different iterations of the social model of disability, with disagreements over precise interpretation, this is one of the dominant paradigms in western societies (Oliver, 1996) notwithstanding the influence of critical disability theory in more recent years. One important challenge that remains for the contemporary model: how can this model be reconciled with the ascendancy of neoliberal philosophy that directs economic, political and social agendas? (e.g., see Reinders, 2000). As a consequence, the political and social imperatives that emanate from neoliberalism for persons living with an intellectual disability do not, in the majority of cases, support persons to lead lives comparable to persons without an intellectual disability (Verdonschot, deWhitte, Reichrath, Buntinx & Curfis, 2009). Typically, there are exceptions to all norms and, accordingly, some persons living with an intellectual disability may successfully participate in economic, political and social domains of their society. When this occurs, (e.g., Bowe, 2005; Carlson, 2000), it is good to recognize and affirm disability social policy goals being actualized. However, the reality experienced by many persons living with a disability is different in many nations. For example, in the economic domain, Australia was ranked 21 out of 29 of the member countries of the OECD when assessed against employment participation of persons with a disability in 2011 (Thomas, 2011). These findings were recorded when Australia was one of the few western economies that experienced minimal impact from the global financial crisis. Furthermore, Australia had the highest level of poverty for persons living with a disability in the OECD with 45% of persons living near or below the poverty line. This data excludes indigenous

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Australians who typically experience higher rates of social and economic disadvantage than other Australians (Hunter, 2007). In 2015, it was estimated that 523,200 Aboriginal and Torres Strait Islander persons lived in Australia. Almost one-quarter (23.9%) of these persons reported living with a disability and the prevalence rates of disability between males and females were similar. When compared with non-Indigenous Australians, Aboriginal and Torres Strait Islander persons had significantly higher rates of intellectual disability, 5.9% compared to 2.5% (Australian Bureau of Statistics, 2017). Clearly, these are unintended consequences of the policies of social inclusion. However, their impact is such that they, on the whole, create spaces to ostracize persons living with an intellectual disability to the margins of society despite the formalized targeted intervention programs aimed at positively influencing the lives of persons living with an intellectual disability. Broadly speaking, these targeted intervention programs in neoliberal societies can be categorized as inclusive and operate parallel to such principles as rights, independence, and choice. Inclusion is multi-faceted. When its focus refers to persons living with an intellectual disability and their social and political context, the discourse is concerned with how persons are educated, with whom, the curriculum, and how persons are accommodated (physical structure, location, etc.) when persons need a place to live. Furthermore, who are person’s friends with, how actively do persons participate in mainstream social activities, and are persons employed (where, what roles and salaries)? If persons are unemployed, are meaningful spaces created that offer educative and/or civic developmental opportunities? How do persons feel they are included or belong to their neighbourhood and their wider society? Clapton (2009) offers a novel and exemplary methodology to examine the notion of inclusion and proposes four dimensions: profound exclusion, technical inclusion, legislative inclusion and ethical inclusion (pp.  23–26). Clapton’s paradigm critiques current approaches to inclusion and exclusion by repositioning the duality of normality/abnormality to an embodiment of being which accentuates the reality of human experiences rather than the unlikelihood of what might be. A possible addendum to Clapton’s methodology might include a specific reference to economic inclusion and social inclusion as discrete dimensions to give the analysis greater rigor. As we

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have observed in Chap. 2, these are critical aspects to persons living with an intellectual disability that are yet to be actualized. Western governments are committed to providing public funding for social inclusion intervention programs. However, there is general agreement that engaging persons without disabilities and communities to create reciprocal and interdependent relationships with persons living with an intellectual disability has inherent limitations. Barriers exist for whatever reasons and they do impact the breadth and depth of personal relationships and the potential lived experiences for persons living with an intellectual disability. Clapton (1996, 2003, 2009) and scholars like Reinders (2000) and Vanier (1998) suggest that we, as persons interested in altering this reality, need to evolve our notion of inclusion and deliberately personalize individual circumstances to develop mutual friendships and share our lives together. Thus we can become role-models for other persons. This is significant since this approach creates spaces for persons to encounter each other outside of normative patterns of interaction. In this encounter, persons will meet in social and emotional spheres outside of formal or paid roles. This is where we will begin to understand each other’s character and personhood. This should not be interpreted as another form of person-centred planning. Notwithstanding the merit of this strategy, what is being argued is that what exists prior to any planning process is envisioning the person as someone who is valued and who can live a fulfilled life through an active social network. This form of envisioning will only succeed when persons are emotionally and socially connected to each other. Importantly, the person living with an intellectual disability needs to lead this process. This envisioning incorporates exploring, developing and imagining a vision of each person and how s/ he might want to lead a fulfilled life, how might s/he define his/her abilities, how this might be shared with another person, who and what is important today for who s/he is as a person, what relationships affirm his/ her beauty as a person, what captures his/her attention and enthusiasm, and how this can be used to link him/her to persons without disabilities. This approach could offer persons living with an intellectual disability the opportunity to feel belonging, as do others, and be a part of the community they live in and take up active civic roles. Goode (1994) presents

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what is being suggested succinctly as knowing “the lived realities of everyday lives” (p.20); that is, I know another person, I have personal knowledge of her, I know her likes, dislikes and I want her to live the fullest life possible when I allow myself to walk in her shoes and she knows me.

5.5 Human Dignity What does it mean to be a human person? It may incorporate many dimensions (Rorty, 1976; Singer, 1994; Vanier, 1998). For our purposes, the focus is on human sociality since we are concerned with a study of the social policies of inclusion for persons living with an intellectual disability. Defining who a person is in terms of nomen dignitas is critical and recognizes that we are engaging with a being that is a somebody rather than a something and compels us to act in such a way. Moreover, moving the debate away from discourses of personhood is aimed at morally challenging the reader and others to recognize the phenomenon of human kinship. Aristotle’s understanding of human nature leads him to appreciate all living organisms in terms of their potentialities, that is, what is it that all organisms are capable of becoming (Aristotle, trans. Ross, 2001) that will be faithful to their inherent nature. One way of understanding what Aristotle means when he refers to potentialities is through the English word realize. Realize has two meanings: first, to be conscious of some person or thing and, second, to turn something into a reality. Aristotle’s use of the term reflects both meanings. Every organism has a purpose and living things have a potential or dynamis to develop and mature into their purpose. Recall earlier in Chap. 1, we discussed Macmurray’s (1935) use of organic, mechanical and living nature, which is premised, on Aristotle’s potentiality. As persons we have a material nature—our bodies whose form is determined by our DNA and the aspect that we can control, to a greater or less extent, are the reason and purpose of our existence. A person actualizing his/her dreams, desires and personal skills is a person who is realizing his/her potentialities. If a person is to achieve his/her potential, then his/her physiological, safety, social and emotional needs will to be met to support him/her to live a flourishing life.

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Persons who hold roles such as parents and educators, or as a personal carer, share a responsibility in enabling those persons in their charge to identify and realize their potential. If persons living with an intellectual disability do not have access to environmental and social conditions that satisfy their physiological, social and emotional well-being, then it is likely these persons will then remain the ostracized other in their local community and wider society. Reinders (2008) and Macmurray (1961) argue that an optimum good for persons is friendship, and more broadly, social intercourse. As persons, we all need opportunities to realize this potential. When we recognize the mutuality of our humanness in persons who are other to us, a possible consequence of the failure of social policies of inclusion for persons living with an intellectual disability emerges that may not only lead some persons to question their personhood qua persons, it might also compromise their human dignity. Human nature has a nebulous quality to it, and I propose that if four virtues such as attentiveness, listening (i.e., active listening), breath and silence are considered, these may shed light on how we, as individuals, in the personal, cultural and structural spheres may uphold the human dignity of all persons including those living with an intellectual disability. These virtues occupy our personal ethical space; they can motivate persons to engage with an other in a respectful and dignified manner. According to Toronto (1993), attentiveness is the most critical virtue in the ethics of care and realizing it is by no means an easy task. If you are being attentive to a person, you are aware of him/her in the fullness of being for this person’s own sake and flourishing and well-being. Thus, it is more than a simple moral action since life is more than the objects, properties, roles and riches that one can acquire and be valued for. Genuine attentiveness is sensitive to the emotional, personal, cultural, social and political needs of other persons. Active listening to an other holds open the possibility of contributing towards a better understanding of the uniqueness persons have for each other, the ethical spaces that separate persons in their different categories and positions or roles. Active listening is one form of respect which observes and responds to a person’s non-verbal actions, hears their words, values and communicates using media and mediums that both persons understand in an integrated way and considers his/her life in full and in context to his/her current realities.

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The notion of breath is taken from Irigaray’s (2004) work and can be integrated into the provision of support to persons living with an intellectual disability. Firstly, breath refers to life itself. Without it we cease to exist. It also creates the possibility for persons to move beyond living at biological levels to a higher order that develops personal capabilities. So breath also refers to ourselves and our capacity to look at our own subjectivity and how it has been informed by the culture we live in, the other persons in our lives and, importantly, how we can emancipate ourselves, if necessary, to a more dignified view of persons living with an intellectual disability. For Irigaray (1996), silence is paradoxical in that it refers to an interior quietness and the ability to communicate far beyond personal communication skills. It implies that our senses have been transformed to envisage persons differently (i.e., positively) and promotes interpersonal relations in spite of personal character, racial, ethical or cognitive differences. In Irigaray’s (1996) view, this adopting a new culture will only form if persons are attentive to breath: respect for self, recognition of separate natures, yet affirming differences and being attentive to the needs of others. Breath is the bridge between the different spaces that persons with and persons without an intellectual disability inhabit in western cultures. The biggest challenge to implementing successful policies of social inclusion for persons living with an intellectual disability does not concern establishing business or best practice frameworks for funding and administration. In a sense, structural controls will always default to the prevailing ethos of government and this compromises what I argue are the most critical aspects: recognizing and valuing the human dignity of persons living with an intellectual disability. Each society has significant numbers of persons who are discernible through institutional data collection techniques and, therefore, planning for new persons can be determined. What is more difficult is how to develop personalist and yet systemic approaches that will have time and resources to accurately identify a person’s needs and honour his/her particular rhythm of life. An approach to recognizing, valuing and realizing this maxim could be by honouring three propositions across personal, cultural and structural spheres of life. That is, the current orthodoxy will need radical transformation from individualism and independence to vulnerability,

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interdependency and a commitment to common good. The three propositions are: 1. The dignity of each person is paramount and of equal measure no matter where a person is placed in society. 2. Persons are social and relational, who need and desire to live a common life that respects each other’s dignity, needs and aspirations. 3. This common life (access to sufficient food, personal safety, equal treatment, etc.) is necessary and accessible for every person. If we accept that human dignity is critical to every person’s life and inviolable, then “all that people can do is affront your dignity by failing to respect it” (Spaemann, 2010. p. 54). In effect, we both acknowledge that (a) a person is someone like ourselves who has a particular character with “projects and categorical desires with which that person is identified” (Williams, 1981, p.  14) and (b) there is a moral imperative to enable these projects and desires to be actualized. However, I argue there is also (c). This is a demand that is made on our moral character to meet these projects and desires since the interdependency of Thompson’s (2003) tri-­ dimensional PCS demands action across all spheres of life to change or achieve personal emancipation.

5.6 Conclusion Tremain’s (2017) work demonstrates how a Foucauldian perspective can be applied to disability services. She blends philosophy, genealogical analysis, political theory and research data from feminist critique to present her argument. Tremain’s (2017) treatise and engagement with contemporary arguments, including genetic technologies, informed consent, neoliberal governmentality, offers a robust and compelling context to disability studies. Tremain (2017) holds no myopia about how to proceed to change the systems, and she correctly observes that persons living with the experience of any form of a disability will only see improved lives “beyond the pages of this book” (p.  205) when a deliberateness by

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government and the disability sector is undertaken that encompasses all institutions in neoliberal societies. Neoliberalism emphasizes the philosophical values of independence, autonomy and a market-based approach to providing social services. The value of such an approach is the focus on person-centred care and personalized or individualized financial resource allocation. Nonetheless, the philosophical values can easily become skewed or distorted. They can be distorted since the focus ignores the role of culture and its nexus with the nature of intellectual disability, the concept of social inclusion and how these impact on the market-place. These past chapters argue that neoliberalism needs to first account for the role of culture in all aspects of disability public policy and then restructure power relationships to empower persons living with an intellectual disability to control persons’ lives. I also argue the values of vulnerability, interdependency and common good are more relevant for the provision of social services then independence and autonomy.

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Simmons, H. G. (1978). Exploring social policy: The English Mental Deficiency Act of 1913. Journal of Social History, 11, 387–403. https://doi.org/10.1353/ josh/11.3.387 Singer, P. (1994). Rethinking life and death: The collapse of our traditional ethics. New York: St Martin’s Press. Singer, P., & Kuhse, H. (1988). Should the baby live?: The problem of handicapped infants. Oxford: Oxford University Press. Spaemann, R. (2010). Essays in anthropology: Variations on a theme (Guido de Graffiti & J. Mumford, Trans.). Eugene, Oregon: Cascade Books. Striker, H. (1997). A history of disability (W.  Sayers, Trans.). Anne Arbour: University of Michigan Press. Thomas, M. (2011) Disability employment in Australia and the OEDC. Parliament of Australia. Retrieved from: https://www.aph.gov.au/ About_Parliament/Parliamentary_Departments/Parliamentary_Library/ FlagPost/2011/December/Disability_employment_in_Australia_and_ the_OECD Thompson, N. (2003). Promoting equality, challenging discrimination and oppression in the human services. London: Palgrave Macmillan. Toronto, J. (1993). Moral boundaries: A political argument for an ethics of care. New York: Routledge. Tremain, S. (2002). On the subject of impairment. In M.  Crocker & T.  Shakespeare (Eds.), Disability/postmodernity: Embodying political theory (pp. 32–47). London: Continuum. Tremain, S. (2005). Foucault, governmentality and critical disability theory: An introduction. In S. Tremain (Ed.), Foucault and the government of disability (pp. 9–27). Anne Arbor: University of Michigan Press. Tremain, S. (2017). Foucault and feminist philosophy of disability. Ann Arbor: University of Michigan Press. Vanier, J. (1998). Becoming human. Toronto, Canada: House of Anansi Press. Verdonschot, M., deWhitte, L., Reichrath, P., Buntinx, W.  H. E., & Curfis, L.  M. G. (2009). Community participation of people with an intellectual disability: A review of empirical findings. Journal of Intellectual Disability Research, 53, 303–318. https://doi.org/10.1111/j.1365-2788.2008.01144.x Williams, B. (1981). Moral luck. Cambridge: Cambridge University Press. Wolfensberger, W. (1975). The origin and nature of our institutional models. Syracuse, New York: Human Polity Press. World Health Organization. (2001). International classification of functioning, disability and health. Geneva: World Health Organization.

6 Belonging in Societies

6.1 Introduction Social policies of inclusion are a key principle in funding, administrating and providing services for people with disabilities. However, it appears to remain an elusive reality despite targeted programmes designed to surmount the social, economic, political and environmental barriers. This chapter critically explores inclusion and suggests an alternative approach; it proposes the term belonging is more congruent with the aims of inclusion. By locating belonging within phenomenology and complementing this with the capability framework, an alternative approach emerges that aims to broaden the minimum standards we have reached in western societies. Belonging transcends professional process, social roles and physical presence that people occupy, and creates or builds places of encounter. This belonging discourse offers three spheres (personal, cultural or institutional and societal) of connectedness, which, combined, focuses on enabling all persons to see beyond their own or others’ disability and their inherent value as a human person. Examples are nuanced to Australia, where the author lives.

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6.2 Belonging Notwithstanding the commitment to inclusive intervention programmes, there is general agreement on engaging persons without disabilities and communities to create reciprocal and interdependent relationships between persons living with and persons living without an intellectual disability. Barriers exist for whatever reasons and they do impact upon the breadth and depth of relationships and the potential lived experiences for persons living with an intellectual disability. Perhaps as Bigby and Wiesel (2011), Clapton (2009), Reinders (2008) and others suggest, we as persons interested in altering this reality need to evolve our notion of inclusion and deliberately personalize individual circumstances. Despite the merit of “person centered-planning” (Beadle-Brown, 2006), what is argued is that what exists prior to any planning process is envisioning the person as someone who is valued and who can live a fulfilled life through an active social network. The person who is engaged to facilitate the process is creative and committed to knowing, understanding and desiring the person living with an intellectual disability to live a flourishing life. Importantly, the default approach is that person living with an intellectual disability leads this process. This envisioning incorporates exploring, developing and imagining a vision of each person and how s/he could lead a fulfilled life; how might s/he define his/her abilities, how might this be shared with another person; who and what is important today for the person; what relationships affirm his/her beauty as a person; what captures his/her attention and enthusiasm; and how can this be used to link him/her to persons without disabilities? This approach offers persons with an intellectual disability the opportunity to feel they belong and included as others do and be part of the community in which they live. The terms belong and belonging are used because their trajectory has a depth that invites or, at least, develops the mindset of persons living with an intellectual disability needing personal relationships and the notion of interdependence. Sherwin (2013) “comes from a place of caution” (p. 11). She suggests that while Australia has implemented a new system that might offer more funding, “many people speak and act as if money, choice and a plan are the answers to all the problems related to disability”

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(p. 11), and “just as money will not buy happiness, it will not necessarily buy better lives for people with disabilities” (p. 13). Although Sherwin is promoting the social role valorization framework, her point is illuminating. Insomuch as funding is an important dimension, without a focus on “a life of purpose, a life that includes relationships with a range of people who aren’t paid” (Sherwin, 2013, p. 11), the personal circumstances of persons with disabilities will not change. Sherwin (2013) sets out a methodology that she argues will be more fulfilling and offers a person with a disability a place to participate and belong through engaging in valued roles. The term belong originates from Middle English from ‘to be’ and the verb ‘long’, which is based on the Old English belongen interpreted as “at hand, or together with”. Exploring the terms belong and belonging offers four dimensions. First, to belong somewhere or to someone signifies that a person is linked to another person or to something. This is similar to its use by The Lumineers (2013) in their song ‘Ho Hey’. While the lyrics are aimed at persons engaged in romantic relationships, the line “I belong to you, you belong to me”, accurately depicts the sentiment that is needed when persons without disabilities are engaging in envisioning and person-­ centred planning for persons living with an intellectual disability. What conditions will engage and sustain persons emotionally and socially? The engagement needs to be personally directed to other persons who are also engaged in the activity. Therefore, the emphasis on planning for persons living with an intellectual disability to engage with persons and in activities has a different focus. This approach highlights that it needs to be an activity that the person chooses, is appropriate to their age, gender and status, and the person is capable of completing it according to normative expectations. The lives many persons live typically incorporate adventure, beauty, creativity, friendships, happiness and risk; how are these dimensions offered to persons living with an intellectual disability? In addition to this, there is deliberate concentration on creating social spaces for the person living with an intellectual disability to initiate and then develop bonds of friendship with persons living without an intellectual disability. We know that friendship is multi-dimensional and reciprocal. We can hardly call unrequited friendships genuine relationships. However, do we truly believe persons  with disabilities enhance

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friendships? persons with disabilities do have something to contribute to persons without disabilities through their friendships (Amado, 1993; Nouwen, 1997; Reinders, 2008). For instance, when our friends are persons with an intellectual disability, we see the world in a different way. We can notice the attention given simply to us, given as presence rather than utility. I am always amazed how a friend of mine who lives with the experience of an intellectual disability always asks me how I am in a tone of voice that tells me he is actually interested in hearing how I am really feeling! Typically, persons living with an intellectual disability may find it difficult to make friendships due to lack of opportunity and experience, not ability or desire. This is a continual and sometimes arduous process. Nonetheless, it can be incredibly emotionally and socially satisfying. Henri Nouwen (1997) offers an honest treatise about his friendship with Adam, a young man with an intellectual disability. Prior to meeting Adam and becoming his carer, Nouwen held many prestigious roles in academia. However, as Adam’s carer in Canada, Nouwen struggled with his role. A decisive moment for him occurred when a friend visited him and scolded him about his presence in a L’Arche community, claiming that Nouwen was frittering away his time and energy because of his relationships. Nouwen suddenly began to realize how persons living with an intellectual disability could remain hidden. As a person, Adam had been hidden from him when they first met, yet over time, Adam had become a person with whom Nouwen had developed a meaningful and deep reciprocal friendship. This commonly occurs, because in our first encounter, it is the disability of a person that we apprehend, and accordingly, it is the person’s disability rather than the person that engages our attention. Surely, if this occurs, we are being biased and discriminatory? However, through their relationship, Nouwen’s daily caring activities had transformed him. He states, “my relationship with Adam was giving me new eyes to see and new ears to hear. I was being changed much more than I ever anticipated” (Nouwen, 1997, pp.  53–54). According to Nouwen, Adam initially remained more constant in their relationship because he “simply lived and by his life invited me to receive his unique gift, wrapped in weakness [or dependence] but given for my transformation” (p. 56). It was through these experiences that Nouwen realized that

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everything that he desired and wanted out of life, love, friendship and a sense of community. This was the same as what Adam wanted out of life. Another dimension of the term belong is to have a role, and through this role to then have a place somewhere or with something that is related to the role we occupy. For example, a student is part of the educational institution s/he is enrolled in since this meets his/her development needs. By virtue of having secured a tertiary qualification in dentistry, accredited persons are known as dentists. Both of these roles are valued roles in society; the student by what s/he might offer and the dentist through the status associated with that profession. However, most persons living with an intellectual disability occupy roles that are not acknowledged as valuable; nonetheless, persons do hold personal roles. For instance, persons are through their role in a family somebody’s son and/or daughter and/or brother and sister. We might ask the question, how frequently are persons living with an intellectual disability reminded of these roles? Indeed, how do we offer support to persons living with an intellectual disability to honour these relationships and take an active role in fulfilling these roles appropriately? In disability theory, Wolfensberger (1998) offers a detailed argument on the importance of securing valued roles for persons living with an intellectual disability, and though this methodology may be less emphasized in contemporary literature, his premises remain valid. If persons living with an intellectual disability are enabled to participate in roles (social, educational, economic or other), they will experience three fundamental experiences common to human existence. The first is the experience of comradeship with the aspiration of friendship through the mutuality of sociality and activity. The second includes the experience of fulfilling a role; and third, the experience of unity, of belonging and being a member of a valued group. A further aspect of belonging concerns participation. To belong implies there is some degree of participation between two or more persons that involves them in taking an active part in both relationships and the community, thus “reciprocity and interdependence, rather than simply a physical presence” (Parmenter, 2014, p. 308). Accordingly, it is through participation in life that we encounter persons, things and places and yet for there to be mutuality in the encounter, there has to be a level of interaction which offers common ground to each person. The point that has

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been made previously about persons having a role is integral to understanding the argument here for participation, having and being in a role is participation and this radically differs from being included in activities. For example, a person with a disability going to school without any expectation of educational achievement is being included in the activity of education. However, it fails to recognize “reciprocity and interdependence” (Parmenter, 2014, p. 308), for what respect are we offering the person when we neglect to challenge his/her intelligence? Another meaning ascribed to belonging is, of course, that something belongs to some person. For instance, my eyes belong to me; I was born with them and they form part of my physical identity. While this is a positive sense of belonging, however, there is also a dark side. If we examine human history we find instances where groups of persons have, mistakenly, believed that certain persons belong to them. This use of belonging is in terms of dominance, where one person, for different reasons, can and has the right to assert supremacy over another person. This belonging can also emanate from the view that persons could be purchased and used by their owners as they determined. Although the rationale is based on the belief that some persons are “less” than human compared to other persons by way of physical or cognitive ability, there is no excuse for this form of domination. The philosophical literature is furnished with theorists who compare persons living with an intellectual disability to non-­ human animals. For instance, McMahan (2002) posits a two-tiered morality system, one for persons and one for non-persons, and he includes persons living with an intellectual disability as “non-persons”. The primary basis for membership of the “persons” category is intrinsic psychological capacities amongst which is higher-level cognition. In my view, the belonging that McMahan (2002) proposes through his typology contributes to a form of domination of persons living without an intellectual disability over persons living with an intellectual disability. Promoting this view can contribute to persons being ascribed less than full moral status as persons, which is abhorrent at many levels and also falls outside the normative moral and legal norms of western nations. Furthermore, it contributes to persons living without an intellectual disability believing that they have the right to an epistemic authority over persons living with an intellectual disability. Finally, it disrespects the opinions and

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relationships that family members have with members who live with an intellectual disability, since many family members contest their relative is a “non-person”. This meaning of belonging only makes sense if we accept that persons, no matter who they are, are equal to other persons and know we are inherently inclined and have a desire to connect with others. As persons we have a need to engage and participate in emotional, physical and social intercourse with different persons and in different roles. Absences from these spheres can cause emotional pain. Belonging builds our capacity as human beings to be resilient and meet the challenges life brings. No matter what the cause for this desire, whether it is as a means to understand ourselves and/or be affirmed in our being or for some other reason, “when people know who they are, where they come from and who they could be, their roles in society become more clear, more flexible and hopefully more meaningful” (Young & Quibell, 2010, p. 761). To some extent belonging offers a completeness that cannot be attained by other means. When persons discover they belong with other persons, to places and communities, then the opportunity to participate in the joy and adventure of exploring life is opened to them. The emphasis on individual autonomy in both the social model of disability and contemporary neoliberal philosophy can work against this notion of belonging. The emphasis on rights and individual autonomy rather than the understanding of the myriad of relationships that exist between individuals can reinforce the polarity of inclusion/exclusion over belonging. Persons do not exist in a vacuum rather, as I have argued, are interdependent persons. This latter focus is on social relationships with other persons, that is, our human nature as social animals and our need to understand and have personal relationships with each other. In this framework, persons with and persons living without disabilities will do the right thing by each other because of their shared understanding of each other and through the meaning this relationship offers them. This is a more complete picture of who persons are as individuals and the need persons have for legal, political or social fairness and have shown respect to their personhood is for most persons a commonly shared value. Accordingly then, “this network of human existence, culture, is what bequeaths to persons a sense of participative ‘belonging’, comprising a

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meaningful past, present and future, intimately related to each individual but shared amongst the many” (Young & Quibell, 2010, p. 759). It should be clear by now that the concept of belonging developed here incorporates the understanding of how inclusion has been used by scholars and practitioners. However, the argument posited here wants to extend the notion of social inclusion and proposes that belonging is best placed to embrace notions of species membership, communalism, citizenship, identity, emancipation, voice, positioning and identification. Inclusion has been an integral concept in the operational and organizational processes and systems concerned with western disability services and yet success is limited (Bigby & Wiesel, 2011). The reasons for this are multiple and complex and it is suggested here that the attitudes and cultural norms towards persons living with an intellectual disability play a significant role. Attitudes and cultural norms will continue to remain estranged between persons living with and persons living without an intellectual disability until they develop social and personal relationships. Take for instance a study by Yazbeck, McVilly and Parmenter (2004) of the attitudes of students, disability service professionals and the general population towards persons living with an intellectual disability. The findings reveal there is a high degree of congruence between the attitudes of students and professionals engaged in disability services, which are significantly more positive towards persons living with an intellectual disability than those of the general population. The authors make many recommendations and note the more positive groups support principles of community inclusion. In the Australian education system, while many persons living with an intellectual disability attend mainstream schools which facilitates relationship development between students, there is still more work to be done in engaging students to meet and socialize with each other outside of school hours. This author proposes that a reasonable supposition for this attitude can be concluded as persons being in relationships with each other and having a sense that persons with disabilities belong in the community. Despite this study being conducted in Australia, results similar to this Australian study can be found in other western nation states (e.g., Cumella, 2008).

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6.3 Inclusion and Belonging As we have noted, most western nation states have created social and political environments that offer persons of all abilities, cultural backgrounds and genders the possibility of living in communities and achieving their desired lifestyle. The recently introduced National Disability Insurance Scheme (NDIS) is advertised as a “modern, person-centered support system, helping hundreds of thousands of Australians with disability and their families to have the opportunity to participate actively in their communities by providing targeted supports aligned to need” (Every Australian Counts, 2014). This is arguably the most thick form of a market-­based system in Australia. The implication is that persons with disabilities will not have the opportunities to actively participate in their community without planning. Notwithstanding the inherent weakness in the previous funding and administering systems, in itself this ideal is neither new nor novel, as the Australian government’s disability social policy has focused on these goals over the last few decades with different degrees of success (Clapton, 1996; Clement & Bigby, 2009; Vinson, 2010). Scholars, practitioners and others will debate the causes and propose mechanisms to remediate the limited inclusion/exclusion (or participation) of persons with disabilities across different settings. Still, there is something mechanistic and staid in these approaches to problem solving that fail to account for the relational and interdependent accounts of who we are as persons. More often than not, the research indicated that persons living with an intellectual disability are physically or spatially and socially present, and yet persons themselves do not feel included. It is likely that most readers will have experienced the presence of a person living with an intellectual disability in a community setting where s/he occupied a fringe role. Indeed, inclusion, in its true meaning, is “a sense of reciprocity and interdependence, rather than simply a physical presence” (Parmenter, 2014, p. 308). This is a more pervasive view of inclusion and it is argued here that it is more accurately described as belonging. We feel we belong somewhere when the persons with whom we share society with are persons who create and build places where we can encounter each other and where we build positive relationships. Graham

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(2013) argues that “bonding and belonging nourish resilience” (p. 134). Her work as a psychotherapist and neuroscientist demonstrates how a person’s sense of connection affects his/her own ability to manage his/her own inner emotive states, particularly during times of stress and crisis. She posits that “the process of being seem understood, and accepted by an attuned, emphatic other engenders a sense of genuine self-acceptance, a feeling that we are profoundly okay” (p.134). A person will believe that s/he belongs somewhere when s/he “feel[s] safe enough, strong enough, sane enough to venture courageously into the world and develop the competencies we need to deal with life’s challenges” (p. 134). If persons without disabilities recognize they are “the kind of people who are prepared to share their lives with [people with disabilities]” (Reinders, 2000, pp. xi), then the necessary support will be forthcoming. Consequently, persons living with a disability are more likely to have a place and feel valued for who they are and have a sense of belonging with other persons and their local neighbourhood. Therefore, the concept of belonging is explored as an alternative approach. This line of enquiry proposes that the concept of belonging has greater significance than inclusion and/or exclusion. Belonging transcends professional or formalized processes, social roles and the physical place that persons occupy, and creates or builds places of encounter. A phenomenological approach is utilized as it best explains the lived experiences of persons living with an intellectual disability. Belonging by definition implies that a person has an affinity to other persons, community and their wider society, thus this discourse engages with Thompson’s (2003) tri-dimensional PCS analysis which, when combined, focuses on enabling persons to see beyond any disability per se and engages with the person as an inherently valuable human being. Moreover, this approach is also congruent with using the capability framework (Nussbaum, 2000, 2007, 2012) as a methodology for personal planning to realize the principles inherent in both inclusion and belonging. It might be possible to compare our first encounter with persons living with an intellectual disability to meeting persons from another culture, creed or nation, who might be termed a foreigner. Dufourmantelle and Derrida (2000) offer insights into how persons are invited and receive hospitality from the ancient Greeks through to modernity. The term

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hospitality is taken to imply a friendliness and kindness in welcoming strangers and/or foreigners, with strangers in this context implying persons not related or known to each other personally. Dufourmantelle and Derrida ask, “must one ask the foreigner to understand us, speak our language, in all the senses of this term, in all its possible extensions…?” (2000, p. 15). They are clear about how we should respond: Let us say yes to who or what turn up, before any determination, before any anticipation, before any identification, whether or not it has to do with a foreigner, an immigrant, an invited guest, or an unexpected visitor…a human… male or female. (2000, p. 77)

Is this, however, our experience of meeting persons living with an intellectual disability? I am not sure that this is what occurs for most persons. In many ways, western nations may, unconsciously, not convey a message of hospitality to its citizens living with an intellectual disability. What then occurs for persons living with an intellectual disability is more than a qualitative personal interaction since, more often than not, a person is treated in a negative fashion. Moreover, if there is validity to the idea that our self-identity is influenced by a positive or negative acknowledgement a person receives from other persons, then “no recognition or mis-recognition can inflict harm, can be a form of oppression, imprisoning some in a false, distorted, and reduced mode of being” (Taylor, 1994, p. 25). This type of response can lead to what Goffman termed stigma (2006, p. 132), as has been noted in Chap. 3. What characterizes stigma is dishonouring at least one personal attribute since it has failed to meet the expected normative standard of social interaction with the effect that the person now has “an undesired differentness from what we had expected” (Goffman, 1963, p. 5).

6.4 Capability Approach Oliver (1990) suggests that the question of disability and a person’s experience of disability have often been “given scant consideration” (p. x) outside of medicine and psychology and this can result in personal, social

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and relational lives being overshadowed. Unfortunately, this emphasis also acts as a filter under which persons living with an intellectual disability are observed and their essence of their personhood is then often defined in these (medical and psychological) terms. Accordingly, who persons are in terms of their senses, thoughts, reasoning and affiliation with other persons, which is their lived experiences, can be overlooked. The social model aims to combat these experiences by focusing on civil rights and conceptualizing the shortcomings persons experience in the community with social, economic, political and environmental barriers. Increasingly, the emphasis on disability in western societies is based on the notion of rights, choice and autonomy. Fyson and Cromby (2013) offer convincing evidence on the limitations of this discourse without “relational understandings of personhood [which] should, we would argue, be used as the fundamental basis for constructing services” (p. 1171). Typically, all intervention programmes need to account for the relational milieu, that is the interaction that occurs in the wider economic, social and political society. It is possible to simply read this notion of belonging as another nebulous concept that practically offers no substantive contribution to an effective inclusion agenda. Furthermore, even if it is recognized as holding open alternative realities for persons living with an intellectual disability, the ascendancy of the individual model contrasts with the emphasis here on interdependency and mutuality. Nonetheless, despite these and other potential criticisms, locating belonging within a broader framework has a utility that can be applied to real life problems. Accordingly, in constructing and developing this notion of belonging, two recognized theoretical frameworks were used to develop an understanding of the complex issues inherent in facilitating persons with disabilities to “participate fully in all aspects of life” (United Nations, 2006, Article 9). Both frameworks draw upon human experiences, that is, they seek to understand the everyday experiences of persons living with an intellectual disability and argue that belonging (or inclusion) is a complex and continually evolving ontology that is best informed by what is required to promote human growth and personal flourishing if it is to meet its aspirations.

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The frameworks are connected and have rigor in their desire to understand human experience and development. The first framework is developed from philosophy. Philosophy pursues reason and logic to examine reality and ask fundamental questions about life. One method of inquiry in philosophy, developed by Edmund Husserl (Welch, 1965), is known as phenomenology (Moran, 2000), and this refers to the study of phenomena. Phenomena is ordinarily concerned with the notion of human experience. Phenomenology, then, focuses on human experience in an attempt to understand its structure and character and what might be discovered from this analysis. Methodologically, this approach diverges from speculative theories because it takes into account the historical and existential factors that operate in the development of human experience. This approach offers a valid analysis of social inclusion (and belonging) because as is argued here, “it is the lived experiences of people with intellectual disabilities, however, which is the true test of their acceptance as an integral part of the community” (Parmenter, 2014, p. 308). The phenomenological approach emphasizes the importance of the personal perspective and how persons interpret their experience. It is therefore possible to acquire an understanding, albeit personal, into how persons and society promote belonging. For instance, until recently, the Australian government gave priority to building a stronger and fairer society through establishing an agency to focus on inclusion. The Australian Social Inclusion Board (2010) suggests being socially included signifies that persons have “the resources, opportunities and capabilities” they need to: • Learn (participate in education and training); • Work (participate in employment, unpaid voluntary work including family and carer responsibilities); • Engage (connect with, Other persons, use local services and participate in local, cultural, civic and recreational activities) and • Have a voice (influence decisions that affect them) (2010, p. 15).

These characteristics all refer to the lived experiences of persons. They recognize that some persons experience challenges in education and employment, socially and politically. The aim of the government’s agenda is “to make sure every Australian has the capability to fulfill their potential” (Australian Social Inclusion Board, 2010). Although the Board has

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since been abandoned, this appears to be a political decision rather than a dissonance with the need for a social inclusion agenda. Shea (2019) also prioritizes social capabilities of human nature and goods of personal relationships which promote a positive view of persons living with an intellectual disability. He introduces his readers to “Jim”, a man who lives with the experience of an intellectual disability and demonstrates how “Jim” appears to be well connected relationally and leading a flourishing life. Burghardt (2004) argues that there is “complementarity between the capabilities framework… and the social model of disability” (p.  751). Her article highlights the congruency between the themes and offers suggestions on how both could be more recognized by “the medical model and neo-liberal economics” (Burghardt, 2004, p. 749). Her recommendation for the capability framework is to apply it to “real-life problems” (2004, p. 749) to demonstrate its applicability. The capabilities approach articulates a set of basic entitlements that are “necessary conditions for a decently just society” (Nussbaum, 2007, p. 155). Nussbaum argues that contemporary society has yet to adequately address three difficult social justice issues, one of which includes offering justice to persons living with all forms of disabilities. She offers the capability approach as a time neutral and eternal standard that offers a plausible solution to these key uncertainties and these incorporate the notion of inclusion and belonging. Indeed, Nussbaum notes the approach has a cross-cultural appeal that enables it to “be the object of an overlapping consensus among people who would otherwise have very different conceptions of the good” (Nussbaum, 2000, p. 5, italics in original). Nussbaum (2007) argues there are ten capabilities that every person needs “as central requirements of a life with dignity”, although it is not intended to be “a complete account of social justice” (p. 75). This is an abbreviated summary:

1. Life—living your life to its normal length; 2. Bodily Health—being able to have good health; 3. Bodily Integrity—being able to move freely from place to place; 4. Senses, Imagination & Thought—being able (and maybe encouraged) to use your senses, imagination, and to think and reason;

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5. Emotions—having attachments to possessions and persons and to experience emotions; 6. Practical Reason—developing a conception of the good and participating in planning about your life and future; 7. Affiliation—choosing with whom you live, recognizing and showing concern for other persons, engaging in normative forms of social interaction, being able to imagine the personal circumstances of another person; 8. Other Species—having the opportunity to live with concern for and in relation to animals, plants and the environment; 9. Play—actively participating in leisure pursuits, laughing and being able to engage in humorous activities with peers; 10. Control over one’s environment—including being able to participate in the political system, own property, have consumer rights and being able to work (Nussbaum, 2007, pp. 76–78).

Importantly, the author proposes that these capabilities offer a set of ideas with three significant spheres of belonging for persons living with an intellectual disability, their families and carers. That is, the capabilities can be grouped into three tiers: the micro or individual/personal, the meso or institutional/cultural and the macro or societal. For the purpose of the argument, the capabilities are rearranged as: 1. Micro or Personal—(i) Life; (ii) Bodily Health; (iii) Bodily Integrity; (iv) Senses, Imagination & Thought; (v) Emotions; and (vi) Practical Reason. 2. Meso or Cultural or institutional—(i) Life; (ii) Bodily Health; (iii) Bodily Integrity; (iv) Senses, Imagination & Thought; (v) Emotions; and (vi) Practical Reason. 3. Macro or societal—(ix) Play; (viii) Control over one’s environment. This approach attempts to meet the challenge set by Parmenter when he asks the question, “what type of life would I like to live if I had a disability?” (2014, p. 311). It also attempts to overcome the ideology that persons living with an intellectual disability are fundamentally different to persons living without disabilities. For instance, Clapton (2003) and Murdick, Shore, Gartin, and Chittooran (2004) argue that included in

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the history of disability is the narrative of persons living with an intellectual disability being considered as others. In Chap. 3, I have demonstrated how persons living with an intellectual disability remain outside of economic, relational and social spheres of society. Thus, persons living with an intellectual disability are considered different and an effect of this difference has led persons living with an intellectual disability to be marginalized and judged as non-persons, that is, they have less status as human beings than persons living without an intellectual disability (McMahan, 2002). Ultimately, the trajectory that ran through this history included overlooking the common humanity we all share as human beings. Accordingly the capabilities are something tangible and can be applied to everyone and to “real life problems” (Burghardt, 2004, p. 749). Finally, the capability framework offers a radical approach to person centred planning (Beadle-Brown, 2006). Not only does it continue to locate disability as an issue for society, it has the remarkable acumen of maintaining the focus on a person and how s/he is living “a life of purpose, a life that includes relationships with a range of people who aren’t paid” (Sherwin, 2013, p. 11). There are some good models of where person centred planning can work effectively. For example, Van Asselt-Goverts, Embergts and Hendricks’ (2015) study assessed the satisfactions of 33 persons living with the experience of an intellectual disability in the Netherlands. Over 73.1% of persons expressed satisfaction with their social networks and what appears to have been critical to the outcomes was (a) the location of persons living geographically close to family member[s] and (b) high quality interpersonal relationships between persons and their professional team in their lives. Nevertheless, person-centred planning can be difficult to achieve. Internationally support planning is difficult to implement. For example, in a study of 61 persons living with the experience of an intellectual disability, participation in the personal planning process raised questions for the researchers (Herps, Buntix & Curfs, 2013). From Some  Disability Service Provider’s Perspective, it Could appear as if support planning was conducted to follow bureaucratic processes rather than as a mechanism to empower persons to take control over their personal lives. The authors did recommend improvements (p.  1032), which are focused on these

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persons in their own context of the Netherlands. However, issues such as supporting persons to control the meeting process, accessible communication apply universally to all persons. The capabilities framework can also be applied to the notion of belonging as developed here. At all three spheres of society, it creates options for persons living with an intellectual disability to be judged as equal to other citizens and it promotes persons’ right to education, quality health care, as well as individual and political rights. Each framework (the capability and belonging) presents an alternative way of understanding a human person as relational beings and the purpose of human interaction as social cooperation. Therefore, our sociality is judged as something naturally occurring and equal to our individuality and any need a person has “is a feature of our rationality and our sociability; it is one aspect of our dignity, then, rather than something to be contrasted with it” (Nussbaum, 2007, p. 160). Both discourses, then, are practical and are linked within existing emphasis on person-centred planning (Beadle-Brown, 2006). The capability framework is not a perfect methodology, it has its critics (e.g., Barclay, 2018), rather the framework’s merit is listing characteristics as relational properties which understand a person in how s/he lives their lives, understand self and other persons and his/her community. Nussbaum has refined Her initial methodology following critical feedback from scholars (such as Kittay, 2011), and if it is to maintain currency, it will continue to evolve if it is more fully embraced by social policy networks.

6.5 Conclusion This chapter has offered a critique of inclusion through a focus on belonging and argues that the focus needs to be on creating social, emotional and physical spaces of encounter for persons with and persons living without an intellectual disability. There is a chasm that is increasing in the ways these cohorts live their lives and it is widening within the context of persons living with an intellectual disability in a neoliberal society. The danger is that, while many persons living with an intellectual disability may have a physical presence in the community, they will become

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increasingly socially, economically and politically isolated. Yet, these questions can follow all too easily: • Although persons live in local houses in the community, how engaged are they with their neighbours? • If persons are not meaningfully employed, what fulfillment is being offered instead? The proposed belonging methodology incorporates recognized human development frameworks and the social model of disability. It moves beyond the paradigmatic cycles that claim a radical overhaul that will fix inclusion issues and yet retains a focus on implementing its philosophy and practice. Importantly, it proposes an alternative methodology for personal planning that is best explained by understanding the lived experiences of persons living with an intellectual disability. The approach is congruent with the capability framework and the social model of disability.

References Amado, A. (1993). Friendships and community connections between people with and without developmental disabilities. Baltimore: Paul H Brooks Publishing. Australian Social Inclusion Board. (2010). Social inclusion in Australia: How are we fairing? Canberra: Australian Government. Barclay, L. (2018). Disability with dignity: Justice, human rights and equal status. New York: Routledge. Beadle-Brown, J. (2006). Person-centered approaches and quality of life. Learning Disability Review, 11(3), 4–12. https://doi.org/10.1108/1359547 4200600022 Bigby, C., & Wiesel, I. (2011). Encounter as a dimension of social inclusion for people with intellectual disabilities: Beyond and between community presence and participation. Journal of Intellectual and Developmental ­ Disability, 36, 263–276. https://doi.org/10.3109/13668250.2011.619166 Burghardt, T. (2004). Capabilities and disability: The capability framework and the social model of disability. Disability and Society, 19, 735–751. https://doi. org/10.1080/096875904200084213

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Clapton, J. (1996). Disability, inclusion and the Christian Church. Paper presented at the Disability, Religion and Health Conference. Brisbane, October 18–29, 1996. Clapton, J. (2003). The history of disability: A history of ‘otherness’. New Renaissance. Retrieved from http://www.ru.org/art-there.html Clapton, J. (2009). A transformatory ethic of inclusion. Rotterdam, NL: Sense Publishers. Clement, T., & Bigby, C. (2009). Breaking out of distinct social space: Reflections on supporting community participation for people with severe and profound learning disability. Journal of Applied Research in Learning Disability, 23, 264–275. https://doi.org/10.1111/j.1468-3148.2008.00458.x Cumella, S. (2008). New public management and public services for people with an intellectual disability: A review of the implementation of Valuing People in England. Journal of Policy and Practice in Intellectual Disability, 5, 178–186. https://doi.org/10.1111/j.1741-1130.2008.00171.x Dufourmantelle, A., & Derrida, J. (2000). Of hospitality (R. Bowlby, Trans.). Stanford, CA: Stanford University Press. Every Australian Counts. (2014). NDIS Revolutionising disability services. Retrieved from http://www.everyaustraliancounts.com.au/about/ Fyson, R., & Cromby, J. (2013). Human rights and intellectual disabilities in an era of “choice”. Journal of Intellectual Disability Research, 57, 1164–1172. https://doi.org/10.1111/j/1365-2788.2012.01641.x Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster. Goffman, E. (2006). Selections from Stigma. In L. Davis (Ed.), The disability studies reader (2nd ed., pp. 131–140). New York: Routledge. Graham, L. (2013). Bouncing back. Novak’s, CA: New World Library. Herps, H. A., Buntix, W. H. E., & Curfs, L. M. G. (2013). Individual support planning: Perceptions and expectations of people with disabilities in the Netherlands. Journal of Intellectual Disability Research, 57(11), 1027–1036. https://doi.org/10.1111/j.1365-2788.2012.01598.x Kittay, E. F. (2011). The ethics of care, disability and dependency. Ratio Juris, 24(1), 49–58. https://doi.org/10.1111/j.1467-9337.2010.00473.x Lumineers, The. (2013). Ho Hey’ track number 5, from the album. The Lumineers, written by Wesley Schultz and Jeremy Fraites. Retrieved from http://www.metrolyrics.com/ho-hey-lyrics-the-Lumineers.html McMahan, J. (2002). The ethics of killing: Problems at the margin of life. New York: Oxford University Press.

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Moran, D. (2000). Introduction to phenomenology. London, UK: Routledge. Murdick, N., Shore, P., Gartin, B., & Chittooran, M. (2004). Cross-cultural comparisons of the concept of “otherness” and its impact on persons with disabilities. Education and Training in Developmental Disabilities, 39, 310–316. Nouwen, H. (1997). Adam: God’s beloved. New York: Orbis Books. Nussbaum, M.  C. (2000). Women and human development. Cambridge: Cambridge University Press. Nussbaum, M. C. (2007). Frontiers of justice: Disability, nationality and species membership (The Tanner lectures on human values). Cambridge: Cambridge University Press. Nussbaum, M.  C. (2012). Creating capabilities: The human developmental approach. Cambridge: Cambridge University Press. Oliver, M. (1990). The politics of disablement. Basingstoke, UK: Macmillan. Parmenter, T. (2014). Inclusion and quality of life: Are we there yet? In R. Brown & R.  Faragher (Eds.), Quality of life and intellectual disability: Knowledge application to other social and educational challenges. New  York: Nova Publishers. Reinders, H.  S. (2000). The future of the disabled in liberal society: An ethical analysis. Notre Dame, IN: University of Notre Dame Press. Reinders, H. S. (2008). Receiving the gift of friendship: Profound disability, theological anthropology, and ethics. Grand Rapids, Michigan: Wm. B. Eerdmans. Shea, M. (2019). The quality of life is not strained: Disability, human nature, well-being and relationships. Kennedy Institute of Ethics Journal, 29(4), 333–366. https://doi.org/10.1353/ken.2019.0029 Sherwin, J. (2013). Making the most out of the NDIS. Voice: The journal of Down’s syndrome Australia, pp. 11-13 Taylor, C. (1994). The politics of recognition. In A.  Gutmann (Ed.), Multiculturalism (pp. 25–73). Princeton: Princeton University Press. Thompson, N. (2003). Promoting equality, challenging discrimination and oppression in the human services. London: Palgrave Macmillan. United Nations. (2006). The Convention on the Rights of Persons with Disabilities. Retrieved from http://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-onthe-rights-of-persons-with-disabilities-2.html. Van Asselt-Goverts, A. E., Embregts, P. J. C., & Hendriks, A. H. C. (2015). Social networks of people with mild intellectual disabilities: Characteristics, satisfaction, wishes and quality of life. Journal; of Intellectual Disability Research, 59(5), 450–461. https://doi.org/10.1111/jar.12143

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Vinson, T. (2010). Moving from the edge: Stories of achieving greater inclusion. Melbourne: Jesuit Social Services. Welch, E. P. (1965). The philosophy of Edmund Husserl: The origins and development of phenomenology. New York: Octagon Books. Wolfensberger, W. (1998). A brief introduction to social role valorization: A proposed higher-order concept for addressing the plight of societally devalued people, and strutting human services (3rd ed.). Syracuse, New York: Training Institute for Human Service Planning. Yazbeck, M., McVilly, K., & Parmenter, T. R. (2004). Attitudes towards people with intellectual disabilities. Journal of Disability Policy Studies, 15, 97–111. https://doi.org/10.1177/10442073040150020401 Young, D. A., & Quibell, R. (2010). Why rights are never enough: Rights intellectual disability and understanding. Disability & Society, 15, 747–764. https://doi.org/10.1080/713661998

7 Alternative Approach to Implementing Social Policies of Inclusion

7.1 Introduction The previous chapters have critically assessed the neoliberal paradigm used by western nations to implement social policies of inclusion for persons living with an intellectual disability. I now propose how a personalist approach might direct the activities that provide support services to ­persons living with an intellectual disability. I propose that there are six points of divergence between neoliberalism and personalism; these are deficiencies between the interrelationship in theory, practice, action, reflection, self and community.

7.2 Neoliberal Paradigms Neoliberalism and other western model of public policy clearly intend to affect social change, realize social justice and alter organizational or corporate accountability. As an agent of social change in Australia, it is tempting to argue the National Disability Insurance Scheme initiative is a Copernican Revolution for persons living with an intellectual disability, © The Author(s) 2020 D. P. Treanor, Intellectual Disability and Social Policies of Inclusion, https://doi.org/10.1007/978-981-13-7056-4_7

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carers and disability organizations. The new paradigms instruct carers and organizations to place person-centred planning (Beadle-Brown, 2006) care at the epicentre of their activities. The emphasis on personal budgets and individualized funding implies that social welfare or disability organizations will no longer accept persons or have a person referred to their services. Rather, persons living with an intellectual disability will choose what services they receive and attend. Therefore, with respect to social justice, the Scheme is concerned with empowerment, realization of personal human potential and enabling personal flourishing and well-­ being. I suggest a premise the paradigm proposes is that there is a synergy between the activities of caring and the outcomes from practices of business that positively influences the lives of persons living with an intellectual disability. These paradigms, therefore, aspire to give primacy to the former, the activities of caring and, indeed, posits them as a product. In Australia, it is expected that demand for this product will remain high— more than 314,000 persons used the service in the year from July 2010 to June 2011, an increase of 45% from 2005/06 and the rate is expected to continue to rise (Scott & Finke, 2013). Accordingly, organizations that deliver a quality product (i.e., implement person-centred care, accountable and responsible process and practices) will thrive and it is anticipated that some organizations that deliver lower standard outcomes will not survive. In this context, I use activities of caring to refer to activities and active assistance required by a person living with an intellectual disability, which is offered by another person or persons. These activities and assistance include practical support in: • • • • •

Daily household activities Personal assistance Meal preparation and dining Teaching new skills Inclusion and participation in social, recreational and community experiences • Positive emotional behaviour, personal and relationship support

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These activities and assistance have an emotional and educative focus and are provided in such a way as to enhance integrity and the human dignity of the person living with an intellectual disability. Ultimately, they directly contribute to the personal, emotional and social well-being of the person living with an intellectual disability. I take the outcomes of the practices of business to refer to the organizational culture, processes and practices that are primarily directed to operating a service for persons living with an intellectual disability. The organization could be private, a statutory body, a religious organization or a not-for-profit service.

7.3 The Personalist Approach The neoliberal paradigm sounds appealing, and what has been demonstrated is how the rhetoric of its philosophical principles gives priority to persons living with an intellectual disability to maximize their well-being and quality of life. The philosophical principles nexus covers the focus on persons as unique and self-determining. It sounds very personalist! Nevertheless, an analysis is required. Many personalists, while supporting democracy as a political system, will hold concern for how the human dignity of persons will be legally recognized and honoured. A focus on human dignity challenges neoliberal anthropological assumptions that imagine persons as consumers with unlimited desires. This contradicts personalist anthropology of persons as actors and engaged through mutual interdependent relationships. A second difference between the principles is that personalist principles envisage the most critical aspect of being a person to be their relationships with other persons. In that way, persons achieve well-being or personal flourishing through engaging with other persons in the community which is an end in itself. Accordingly, what then might a personalist support system for persons living with an intellectual disability incorporate, taking into account that persons living with an intellectual disability would find it difficult if not impossible to maintain their well-being and live lifestyles analogous with other persons in their community without this support? What characteristics do the support personnel, their supervisors, the work culture, organizational systems and processes need to have in order to meet the demands and

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challenges to be continually innovative, creative and proactive in maximizing the social well-being and quality of life of persons living with an intellectual disability? Clearly, individual workers and organizations exercise power and authority in the normal course of discharging their roles and functions. As Foucault demonstrated, power does not need to be coercive; rather, assessment, diagnosis and other processes can be structured in such ways as to maintain hierarchical power relations (Tremain, 2005). Nonetheless, can we use this power and authority in such a way that we engage and struggle together in dialogue and critical review to transform our own and organizational practices so that they become conduits towards maximizing personal, social well-being and quality of life of persons living with an intellectual disability? I suspect it is next to impossible to describe with any depth what an exact personalist approach to services for persons living with an intellectual disability might look like without personal knowledge of the persons who are in need of the support. We need to know who the persons are, precisely identify their capabilities and how their disability impacts their desired living arrangements, social relationships, the community and so forth. Furthermore, in itself, personalism offers no grand revelation and certainly no immediate quick fix explanations for the multifaceted range of issues and difficulties associated with any nationally coordinated disability system. Accordingly, the huge degree of uniqueness in the individuality of each person is such that a predominant methodology is demanded to account for personal phenomenology. Despite this assertion, I argue that personalism offers a cogent practical framework for persons living with an intellectual disability, carers, disability organizations and government. I suggest it articulates a set of principles that emphasizes the points of reference from which persons can style their interpersonal actions and organizations that can shape their activities of caring and practices of business. These principles have two further characteristics. First, they offer society a positive vision of humanity, albeit an alternative focus. That is, they suggest an explanation for our personal discomfort and anguish that emanates from relationships. However, this experience of anguish does not have to overwhelm us. Its optimism is in suggesting we engage in interdependent relationships with mutual goodwill that stimulates another’s personal flourishing. Second, it

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acknowledges agents have many different traits and relations, which are continually in a state of flux, that change and respond to personal and structural dynamics. Early in Chap. 2, I suggested four principles that are sufficiently adequate to act as primary personalist premises. The principles are based on the work of scholars whom I regard as personalists as they are either associated with persons living with an intellectual disability or who have a personalist focus in their writings. They include Emmanuel Mounier (1952), Eva Feder Kittay (1999), Kittay and Carlson (2009), John Macmurray (1961, 1969), Jean Vanier (1998, 2005) and Jenny Teichman (1996, 2001). Similar to Nussbaum’s (2000) capability approach, I accept that the principles are open-ended and may undergo modification over time. Accordingly, they are relevant when we reflect on (a) the activities of caring, (b) the practices of business and (c) the nature of structured support networks for persons with an intellectual disability, their families and carers. The principles are:

I. All persons, regardless of creed, gender, limitations, race, or sexual orientation are important and valuable in their own right and are to be respected; II. The greatest personal tragedy for an individual is to experience the contempt of another person[s] that has the effect of dominating and/ or repressing his or her human flourishing; III. If we are serious about enabling all persons to live life in such a way as to flourish, then or in the future all persons will need each other and in this way persons can recognize each other as being interdependent; and IV. This need for each other creates a vulnerability and interdependency that holds open the opportunity for a personal transformation from a preoccupation with personal power and holding roles to simply being in relationship with persons and having fun. (Treanor, 2014, p. 8)

By personal flourishing I mean persons having a positive self-esteem, having and being a friend, and being meaningfully engaged with activities, persons and community. In a personal approach, these principles are the formative glue which permeates the relationships, culture, processes and practices in the management and funding methodology of disability

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services. They establish a shared meaning to the activities of caring and practices of business and the ways that these will be created, expressed, reproduced, challenged and changed. Importantly, the principles are also a set of ideas with three significant practice implications for persons living with an intellectual disability, their families and carers; that is, in the macro or societal, the meso or institutional and the micro or personal spheres of a person’s life. Recall that I mentioned earlier that in the macro sphere we would expect to find a society that legislates inclusively so that persons living with an intellectual disability would have full rights to citizenship, avenues to legal and civil recourse in any event or incidences of discrimination and participatory mechanisms to have their voices heard. We would also expect to find that large civic institutions would not only support persons but would also have a range of strategies to engage with persons living with an intellectual disability. However, as we have noted, the research findings from the policies of social inclusion indicate that whilst these and other societal practices are valuable, society often accords a higher precedence to global processes over developing and promoting vision of persons living with an intellectual disability as persons who have value and who we need of a formal voice in our society. Moreover, employers in the open employment market have not engaged persons living with an intellectual disability in their workforce nor have education institutions, with minor exceptions (e.g., Trinity College Dublin, 2018), proactively developed programmes that are meaningful to persons living with an intellectual disability. Also in the macro sphere, we have not observed a significant increase in the number of persons living with an intellectual disability meaningfully engaged socially with non-peers. Reinders (2000) is sharply perceptive about how we interact with persons living with intellectual disabilities when he argues that societies need policies, processes and mechanisms that “sustain adequate support for [people with disabilities] and their families to the extent that its citizens are the kind of people who are prepared to share their lives with them and who have the character to do so” (pp. x–xi). Macmurray (1961) believes that “abnormality consists in [the individual] inability to enter into normal personal relations with others” (p. 36). Macmurray (1961) also suggests that “any human society is a

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unity of persons” (p. 127). In other words, a personalist vision gives persons a place to belong. As we noted in the last chapter, how we feel we belong to other persons, a neighbourhood or a society transcends legal, professional or formalized processes, roles and physical presence. We feel we belong somewhere when the persons with whom we share society are persons who create and build places where we can encounter each other and build positive relationships. Accordingly, I suggest, in a society with a disability personalist vision, these principles will find a home. These philosophical principles are those that give priority to treating all persons as persons with the right to life, liberty, self-determination, freedom of beliefs and which promote the importance of emotions in persons’ lives. Ultimately, the principles are visionary and concerned with structuring and enabling society to focus on honouring and valuing all persons regardless of their status or capabilities. A personalist approach will also aspire to influence the institutional sphere to focus outcomes from their practices of business to creating sensitive and positive interdependent relationships. From my reading of personalism, I understand it to promote the culture, practices, rules, regulations and all structures and processes that are essential to serving the need of persons to be in relationships that offer each person meaning and connection with the local and wider community. Therefore, I would expect the meso tier to have more than a robust form of governance. Indeed, personalism demands refocusing any form of business as a Community of Persons. I professionally disagree with using the term business when referring to working with persons living with an intellectual disability and draw the reader’s attention to the fact that the business being referred to here means the activities of caring and practices of business listed earlier on p. XXX. Most persons would, I imagine, want these services provided in a relational sphere rather than as mercantile or utility transactions. Naughton (2012) argues that the roots of moral life in the practices of business in the economic sphere are disconnected with society as a whole. He suggests the means by which business can work to serve society is through accepting that certain goods contribute to human flourishing and these need to be pursued. The list of goods he proposes includes community, love and relationships, for these serve as the “deepest convictions of humanity” (pp.  12–13). Importantly, he reminds us

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that before we are part of the outcomes of the practices of business, we are persons, born into families and communities. A possible limitation of Naughton’s argument is that he advocates a Catholic vision which might challenge those persons outside this faith. However, I think we can take three central messages from his argument. First, the outcomes of the practices of business should have a relational focus. How are they contributing to human flourishing? Second, the means used need to extend the care of humanity and personal flourishing rather than be merely an exchange. Third, carers’ participation in work needs to be determined by personalist values and be focused on human development and education. Finally, the micro sphere refers to each person. Internationally, disability activists are somewhat united in advocating for increased resources and services to their communities. However, theorists and activists disagree with each other and amongst themselves on the nature and cause of disability and what service or support paradigms are the most appropriate means to achieving their ends. Indeed, this is congruent with personalism. We know there are many personalisms (Mounier, 1938, pp. 438–488), and accepting a liberal definitional approach to disability support paradigms has the added advantage of being more inclusive and engaging. This might seem obvious given the primary nature of disability, that is, a physical and/or intellectual typology that manifests itself differently in each person. Accordingly, then when the activities of caring and practices of business intersect, there is a level of unusual complexity and a robust analysis is required to reach some understanding. I suggest that while there might be synergy to these activities, it is complexity that needs considerable attention. I would like to consider one aspect here and draw upon Taylor (1999), who offers illuminating insight when he highlights the current high level of technology that leads to a set of invisible principles rather than persons, with the former dominating over the latter. Although Taylor does not use this example, I suggest his argument is relevant to our discussion here in that invisible processes (e.g., bio-power) can structure the activities of caring in such a way that their purpose is diverted, at best from individual persons to the aggregate level, and at worst to prioritizing practices of business. A personalist will, however, know the persons they support and they will precisely identify their capabilities and how their disability impacts

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their desired living arrangements, social relationships, the community and so forth. They will apply the personalist principles to the lives of persons living with an intellectual disability whom they support. In asking how this could be achieved, consider the following scenario. Imagine you are the person in charge of an agency that offers support to persons living with an intellectual disability. Now think of someone you love or hold dearly in your heart. Let’s call this person Oisín. It might seem obvious to say this, however, the persons with an intellectual disability to whom you offer a service will have, or have had, someone in their life who holds him or her in the regard in which you hold Oisín. Now reflect on your service: • Would you be happy to let Oisín attend the service? • How can you lead the service in making a meaningful and positive difference to Oisín’s life? • How can you make this difference every day? and • How could this practice/policy/direction make a difference for every person in the service?

7.4 The Points of Divergence There are emerging voices that are challenging the Australian NDIS, for instance, Bigby (2013, 2014), O’Connor (2014), Soldatic, van Toorn, Dowse and Muir (2014), Stephens, Cullen and Massey (2014), and Treanor (2017). The peak employer association in Australia, the National Disability Service (NDS, 2017), has highlighted potential difficulties associated with the implementation of individual budgets, personal choice and control, although this response is offered in a neoliberal context and designed to maintain “a disability support market” (NDIS, 2013). This focus is naturally on the practices of business and how employers manage human resources, corporate governance and the changing regulatory environment. Therefore, as I mentioned earlier, it is important to be a critical voice, ask hard questions and be prepared to provide challenging feedback if we want to critically assess the interrelationship between theory and practice, action and reflection, and self and

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community. This is a broader focus than that offered by the NDS (2017). My focus here is how the direction implied by neoliberalism philosophical values will inhibit the activities of caring and practices of business to realize a personalist methodology. Using the principles, I argue neoliberalism has at least six points of divergence from the personalist approach I have proposed to supporting persons living with an intellectual disability to achieve the goals of social inclusion.

7.4.1 Inherent Value The first principle I offered stated: I. All persons, regardless of creed, gender, limitations, race, or sexual orientation are important and valuable, in their own right and are to be respected.

Neoliberalism philosophical principles certainly acknowledge the rights of persons living with disabilities as citizens in western nations. However, it does not specify how it will provide opportunities for persons living with an intellectual disability to act as citizens and employees. Furthermore, it does not appear to address the often misleading and negative images the majority of citizens and society at large hold of persons living with an intellectual disability. Finally, neoliberalism does not appear to address many of the root causes of disability, nor address barriers in areas other than individual support, reflecting the absence of inclusive narratives from persons living with an intellectual disability in any broader disability policy analysis. This individual focus may negatively impact upon some persons and, in particular, persons living with an intellectual disability. For instance, group homes are a dominant model of community living for persons living with an intellectual disability and persons receive different types of support to sustain their place in their group or private home. Many persons living with an intellectual disability will live a flourishing life in these living arrangements. However, in any shared home where a number of persons living with an intellectual disability live, it could be that each person, as an individual, chooses a different support person or agency to

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provide him/her with his/her requisite support. Further, in an era of ever increasing contracts, each person could hold an individual tenancy agreement with an independent landlord. This will increase the level of complexity to further abstract levels needlessly. Nevertheless, this new direction is emerging in social policies (e.g., in Australia and New Zealand). While it sounds robust, the instance of the expression of personal choice may overlook the common good that each person holds qua person. Moreover, in these arrangements, what if a person needs the landlord to modify the living environment and the other three persons do not want the change? Indeed, what if there are no other options available and the person is unable to move into another residence? How thus, can personal differences be honoured by support agencies and personal differences be valued rather than be addressed as issues? Disability, as we have observed, is a lived experience and each person’s experience is unique.

7.4.2 Misleading Personalism The second point of divergence between western nations’ social policies of inclusion and personalism is what I name misleading personalism. I call it misleading personalism since it fails to understand or take account of persons living with an intellectual disability as relational beings who are affected by structures and processes at the macro level. This results from the failure by western nations to establish systemic structures that provide a forum for persons living with the experience of an intellectual disability to have a voice in what matters in their lives. What effect does this have on everyone in the aggregate? I am unable to confirm; however, in my experiences and speaking with persons, my understanding is that, in the majority, persons living with an intellectual disability have negative first-­ hand experience of the second personalist principle: II. The greatest personal tragedy for an individual is to experience the contempt of another person[s] that has the effect of dominating and/or repressing his or her human flourishing.

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In the majority, persons living with an intellectual disability experienced contempt from other persons and institutions, and in many instances, this has the effect of dominating and/or repressing personal human flourishing. The research by Goffman (1959, 1991), Cuddy et  al. (2009), Fiske (1998) demonstrate the negative perceptions held by persons living without an intellectual disability for numerous groups of persons, including persons living with the experience of an intellectual disability. The western nations’ social policy neoliberal focus restricts its view of disability as an individual phenomenon. This is expressed concretely in the rigidity of considering services as silos rather than supports that could complement individualized funding and might focus on wider disabling barriers. In effect, by emphasizing the personal or individual services to individual needs, in Australia the NDIS directs the focus away from disabling barriers that affect all persons living with the experience of any form of disability, obscuring possible alternative policy agendas. What social policies of inclusion appear to ignore is the commonality of negative experiences by persons living with an intellectual disability. Greig (2019) describes the issues associated with the personalization agenda in England; at first the paradigm was successful; however, as it continued to roll out, problems emerged. These included (a) target setting rather than a focus on philosophical concepts, (b) an absence of support with managing personal budgets, (c) the continued focus on “service” paradigms, (d) minimum innovation and (e) austerity strategies that militate against realizing personal goals (Greig, 2019, pp. 105–107). Further, disability scholars such as Oliver (1990) and Thomas (1999) note that as a cohort, persons living with a disability often experience discrimination and oppression that require a structural and/or cultural response combined with individual remediation strategies. If, then, we accept there is a level of complexity to understanding disability, that is, it is not simply located in the individual, then social policies of inclusion do not adequately account for a politics of disablement that “extends far beyond specific welfare issues and consumer demands” (Priestley, 1999, p. 58).

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7.4.3 Needs, Services or Capabilities? The criticism of the funding and administration methodology focus is often on who receives what resources and how much it costs to provide these services. Typically, demand outweighs the western governments’ funded supply, and the delivery costs appear to be increasing at higher than their Consumer Price Index increases. Yet the rhetoric continues to focus on “support to access community services and activities” (e.g., Greig, 2019; NDIS, 2013). There is something uncomfortably linear about this focus which, however well-intentioned in its desire to be responsive, appears to articulate that our human needs can be fulfilled through different services or service provisions! It is as if, with enough services, a person living with an intellectual disability will have and lead a fulfilled life. Within the disability literature there are different discourses on quality of life, with scholars like Parmenter (1996), Riches, Parmenter, Llewellyn, Hindmarsh and Chan (2009) and Schalock (2011) being useful guides to understanding these discourses. I propose Nussbaum’s Capability Approach (2000, 2007) is a more appropriate and robust methodology “since it simply specifies some necessary conditions for a decent just society, in the form of a set of fundamental entitlements of all citizens” (p. 155). Recall, the Capabilities are: (i) Life; (ii) Bodily Health; (iii) Bodily Integrity; (iv) Senses, Imagination & Thought; (v) Emotions; (vi) Practical Reason; (vii) Affiliation; (viii) Other Species; (ix) Play and (x) Control over our personal environment and that these can be grouped into the personal, cultural and societal spheres when designing policies of social inclusion. The Capabilities are also congruent with national and international rights frameworks. They are visionary and purposeful. They articulate a moral code and have an educative dimension. Indeed, their emphasis moves beyond knee jerk response and refocuses policy, practices and funding by examining: not how much money [people with disabilities] have, but what are they actually able to do and to be? And then, once we have ascertained that, what are the obstacles in the way of their ability to function up to the appropriate threshold level? (Nussbaum, 2000, p.168)

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7.4.4 Atoms in a Void or Interdependent? There is a strong sense of individualism in social policies of inclusion, which may emanate from (a) neoliberalism and/or (b) an undesirable history of disability service provision that promoted congregate care for persons living with an intellectual disability. Typically, prior to the 1950s in western societies, persons living with disabilities were institutionalized and the emphasis on meeting their personal needs was overlooked. Accordingly, contemporary disability policy seeks to address this very issue, hence the importance of personalization in service delivery. In itself, I think we might all agree, personalization and individual person-­ centred planning is a good ideal. However, at what point does it fill a person’s support network with other network members? As Clifford Simplican (2019) notes, considerably greater attention needs to be paid to community participation if persons living with an intellectual disability are to actually experience community participation. Indeed, while the personalist approach is congruent with these notions of personalization and individualization, my sense is that it will only achieve these goals through its emphasis and desire to indelibly honour each person’s human dignity. Therefore, a personal approach might give primary focus to a different set of goals to achieve the third principle: III. If we are serious about enabling all persons to live life in such a way as to flourish, then or in the future all persons will need each other and in this way persons can recognize each other as being interdependent.

These goals include promoting and living mutual positive and respectful relationship that emphasize our shared humanity, engaging support personnel in the activities of caring who see their role with an educative focus and who can act as role models, and through the daily activities of living, creating opportunities that offer persons living with an intellectual disability meaningful and participatory roles in local communities, in the workforce and in society at large. Hillman et  al. (2013) completed a longitudinal ethnographic study that analysed the lives of nine persons with an intellectual disability to assess how persons lived their lives and whether they might be judged as

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attaining personal flourishing. Importantly, the authors offer a caveat to their study: “their findings cannot be generalized beyond the participants in this inquiry” (p. 933); thus several networks of support were developed by the study participants’ families and their activities of caring focused on personal-centred planning. The researchers acknowledge this model of care is atypical. Notwithstanding the particularity of the study, the actual findings are significant. The fundamental aspect of activities of caring and practices of business was “respect, leading to positive change…the growth and developing autonomy of the person at the centre of the network was not only satisfying to all members of the support network, it also provided the impetus for new opportunities” (p. 933). The authors completed their study over a three-year period and analysis demonstrates “each support network” (p. 932) or each person’s flourishing changed for the better. Moreover, the researchers developed a model from their principles as a “process of co-creation” (p. 932) in personalism and interdependence. I suggest that the approach this model used to structure its activities of caring and practices of business led ­persons to understand and implement my fourth personal principle: IV. This need for each other creates a vulnerability and interdependency that holds open the opportunity for a personal transformation from a preoccupation with personal power and holding roles to simply being in relationship with persons and having fun.

7.4.5 The Lack of “Personalization” The penultimate point I would like to make is that it appears neoliberal philosophical paradigms are blind to economic, health or social inequalities of persons living with disabilities (Clarke, Smith & Vidler, 2006; Ferguson, 2007; Van Schrojenstein Lantman-De Valk, Linehan, Kerr & Noonan-Walsh, 2007). The point of legislation focused on policies of social inclusion is I suggest what Plato (1975) had in mind when laws were being developed. He suggests that “the whole point of our legislation was to allow the citizens to live supremely happy lives in the greatest possible mutual friendship” (743 c). This does not appear to be the reality

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for the majority of citizens who live with the experience of an intellectual disability. I have mentioned that disability per se is individuated, as each person lives his or her disability in a unique manner. Two persons can be classified as having the same type of disability, yet their personal experiences and circumstances mean the impact of their disability will affect them differently and hence their desires, needs and aspirations will be different. Indeed, as we have noted in Chap. 4, the workforce participation rate by persons with disabilities in Australia continues to lag behind UN target (Australian Bureau of Statistics, 2017). Furthermore, in a report on aging in Australia it was noted: the process of healthy aging in not well understood…further most health surveys do not collect data from people living in residential care [that is people with disabilities] and this population sub group is likely to have poorer health than people living in the community. (Australian Institute of Health & Welfare, 2018)

The rhetoric used in the neoliberal paradigms and the public examples they offer all allude to choice and personalization; however, there are gaps. For example, previous research indicates that the National Disability Insurance Scheme still needs to understand: • What does it mean for a person to develop meaningful relations and experience a quality to interpersonal interactions? • What does it mean to belong, to be connected and to be an active citizen? (Bigby, 2013, 2014; Stephens et al., 2014; Treanor, 2014, 2017)

7.4.6 Personal Integrity The four personalist principles hold open the possibility of three significant practice implications for persons living with an intellectual disability, their families and carers in the macro, meso and micro spheres. The few questions we considered directed attention to process and practice that the activities of caring and practices of business are and will

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confront. However, there is another possible, graver challenge that each sphere will meet, and this concerns the notion of integrity. Williams’ (1981) concern with the notion of integrity and how this may be construed when applied to practical relationship quandaries in the theory of utilitarianism has relevance to the analysis of the National Disability Insurance Scheme (NDIS). Indeed, his objections have particular relevance to dilemmas relating to personal and organizational decisions that individuals and groups have to make by virtue of the activities of caring and practices of business, especially when conflict occurs. Integrity is also personal as it affects how persons judge s/he acts with other person[s]. It can also be a source of psychological anguish if persons are rebuked or if actions are praised, it can serve as an external form of self-esteem. Admittedly, integrity has a nebulous nature (Scherkoske, 2010), and when exhibited by persons, it is often expressed as a “loyalty-exhibited virtue” (p. 336). However, it might be more universally acclaimed as “an important feature of agency” (p.  336). It is possible to argue (e.g., Scherkoske, 2010) that Williams sees integrity as an agent acting concurrently with what values, principles or commitments they respect as essentially moral or ethical. However, for Williams this concept of integrity is not designed as a “counter-example model” (Smart & Williams, 1973, p. 211) as critics may have taken it to imply. Rather it is: As a quality that many people prize and admire. It is in such ways that people put the notion to ethical use. My claim was that if people do put it to ethical use, they cannot accept the picture of action and of moral motivation that direct utilitarianism requires—and here were two stories to remind them, perhaps in different ways, of that truth. (1973, p. 212)

These dilemmas permeate the three tiers of neoliberal philosophical paradigms and will comprise the integrity of society, organizations and carers that will continue to adversely affect social policies of inclusion. The greatest impact will be for persons living with an intellectual disability unless we actively pursue an alternative set of philosophical values that unpin the ideology of neoliberalism.

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7.5 Conclusion At both the national and international levels, social policies of inclusion have been captured and perverted by an over-emphasis on the values inherent in neoliberal ideology and an occupation with market or business approaches to meeting personal needs. Disability practitioners, scholars and others continually seek new approaches to improve the lives and ways persons living with an intellectual disability can engage with other persons and with local communities. These have merit and I do not want to detract from any systems that are enabling persons living with an intellectual disability to lead a fulfilled life or, indeed, who are meaningfully engaged in social, economic, relational and political spheres of life. However, my argument has been that, until we, as members of western societies, actively promote and work for a society that respects, supports and includes all members, we will continue to ostracize persons living with an intellectual disability, either consciously or unconsciously, from our personal and communal lives. Rights, laws and public policies will never suffice. How social policies of inclusion have failed can be judged by Silver’s (1994) judgment of persons living with an intellectual disability who have not yet achieved normative socio-economic status, access to developmentally appropriate education, health care services, accessible transport and a positive image within their society. These forms of social inclusion are not realized for most persons living with an intellectual disability and therefore remain as aspirations.

References Australian Bureau of Statistics (ABS). (2017). Catalogue No. 4430.0. Disability, ageing and carers, Australia: A summary of findings 2015. Retrieved from http://www.abs.gov.au/Ausstats/[email protected]/0/0CD3AF801A5AF108CA2580 4F000F61FB?OpenDocument. Australian Institute of Health and Welfare. (2018). Disability support services: Services provided under the National Disability Agreement 2016–17. Bulletin no. 144. Cat no. AUS 223. Canberra: Australian Institute of Health and Welfare.

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Beadle-Brown, J. (2006). Person-centered approaches and quality of life. Learning Disability Review, 11(3), 4–12. https://doi.org/10.1108/13595 474200600022 Bigby, C. (2013). A national disability insurance scheme: Challenges for social work. Australian Social Work, 66, 1–6. https://doi.org/10.108 0/0312407X.2013.771602 Bigby, C. (2014). Is the National Disability Insurance Scheme taking account of people with intellectual disabilities? Research and Practice in Intellectual & Developmental Disabilities, 1(2), 93–97. https://doi.org/10.1080/2329701 8.2014.974484 Clarke, J., Smith, N., & Vidler, E. (2006). The indeterminacy of choice: Policy and organisational implications. Social Policy and Society, 5, 327–336. https:// doi.org/10.1017/S1474746406003010 Clifford Simplican, S. (2019). Theorising community participation: Successful concept or empty buzzword? Research and Practice in Intellectual and Developmental Disabilities, 6(2), 116–124. https://doi.org/10.1080/2329701 8.2018.1503938 Cuddy, A. J. C., Fiske, S. T., Kwan, V. S. Y., Glick, P., Demoulin, S., Leyens, J. P., … Ziegler, R. (2009). Stereotype content model across cultures: Towards universal similarities and some differences. British Journal of Social Psychology, 48, 1–33. https://doi.org/10.1348/014466608X314935 Ferguson, I. (2007). Reclaiming social work: Challenging neo-liberalism and promoting social justice. India: Sage Publications. Fiske, S. (1998). Stereotyping, prejudice and discrimination. In D. T. Gilbert, S.  Fisk, & G.  Lindsey (Eds.), The handbook of social psychology (4th ed., pp. 357–414). New York: McGraw-Hill. Goffman, E. (1959). The presentation of the self in everyday life. New  York: Doubleday. Goffman, E. (1991). Asylums: Essays on the social situations of mental patients and other inmates. Harmondsworth: Penguin. Greig, R. (2019). Learning the lessons from personalization in England. Research and Practice in Intellectual and Developmental Disabilities, 6(2), 99–109. https://doi.org/10.1080/23297018.2019.1579053 Hillman, A., Donnelly, M., Dew, A., Stancliffe, R., Whitaker, L., Knox, M., … Parmenter, T. (2013). The dynamics of support over time in the intentional support networks of none people with intellectual disability. Disability & Society, 28, 922–1036. https://doi.org/10.1080/09687599.2012.741515

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Kittay, E.  F. (1999). Love’s labor: Essays on women, equality and dependency. Oxford: Oxford University Press. Kittay, E. F., & Carlson, L. (2009). Cognitive disability and its challenge to moral philosophy. Oxford: Blackwell Publishing. Macmurray, J. (1961). Persons in relation. London: Faber & Faber. Macmurray, J. (1969). The self as agent. London: Faber & Faber. Mounier, E. (1938). A personalist manifesto (Monks of the St. John’s Abbey, Trans.). New York: Longmans, Green & Co. Mounier, E. (1952). Personalism (P.  Mairead, Trans.). Notre Dame, IN: University of Notre Dame Press. National Disability Insurance Scheme. (2013). Retrieved from http://www.disabilitycareaustralia.gov.au/document/239. National Disability Services (NDS). (2017). State of Sector Report 2017. Retrieved from https://www.nds.org.au/news/state-of-the-disabilitysector-report-2017-reflects-sector-under-pressure. Naughton, M. (2012). The logic of gift: Rethinking business as a community of persons. Milwaukee: Marquette University Press. Nussbaum, M.  C. (2000). Women and human development. Cambridge: Cambridge University Press. Nussbaum, M. C. (2007). Frontiers of justice: disability, nationality and species membership (The Tanner lectures on human values). Cambridge: Cambridge University Press. O’Connor, M. (2014). The national disability insurance scheme for people with mild intellectual disability: Potential pitfalls for consideration. Research and Practice in Intellectual and Developmental Disabilities, 1(1), 17–24. https:// doi.org/10.1080/23297018.2014.908815 Oliver, M. (1990). The politics of disablement. Basingstoke, UK: Macmillan. Parmenter, T. (1996). The utility of quality of life as a construct for social and health policy development. In R.  Renick, I.  Brown, & M.  Nagle (Eds.), Quality of life in health promotion and rehabilitation. New York: Sage. Plato. (1975). Laws (T. Saunders, Trans.). London: Penguin Books. Priestley, M. (1999). Disability politics and community care. London: Jessica Kingsley Publishers. Reinders, H.  S. (2000). The future of the disabled in liberal society: An ethical analysis. Notre Dame, IN: University of Notre Dame Press. Riches, V., Parmenter, T., Llewellyn, G., Hindmarsh, G., & Chan, J. (2009). I-CAN: A new instrument to classify support needs for people with disabil-

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ity: Part 1. Journal of Applied Research in Intellectual Disabilities, 22, 326–329. https://doi.org/10.1111/j.1468-3148.2008.00466.x Schalock, R. (2011). The evolving understanding of the construct of intellectual disability. Journal of Intellectual and Development Disability, 36, 227–237. https://doi.org/10.3109/13668250.2011.624087 Scherkoske, G. (2010). Integrity and moral danger. Canadian Journal of Philosophy, 40, 335–358. https://doi.org/10.1080/00455091.2010.10716726 Scott, J., & Finke, M. (2013). The demand for disability insurance. Financial Services Review, 22(1), 1–12. Silver, H. (1994). Social exclusion and social solidarity: Three paradigms. International Labour Review, 133, 531–578. Smart, J. J., & Williams, B. (1973). Utilitarianism: For and against. Cambridge, UK: Cambridge University Press. Soldatic, K., van Toorn, G., Dowse, L., & Muir, K. (2014). Intellectual disability and complex intersections: Marginalisation under the national disability insurance scheme. Research and Practice in Intellectual and Developmental Disabilities, 1(1), 6–16. https://doi.org/10.1080/23297018.2014.906050 Stephens, A., Cullen, M., & Massey, L. (2014). Will the National Disability Insurance Scheme improve the lives of those most in need? Effective service delivery for people with acquired brain injury and other disabilities in remote Aboriginal and Torres Strait Islander communities. Australian Journal of Public Administration, 73, 260–270. https://doi.org/10.1111/ 1467-8500.12073 Taylor, C. (1999). Notes from an interview with Charles Taylor by Michael Enright. CBS Radio. This Morning, December 5. Teichman, J. (1996). Social ethics: A student’s guide. Oxford: Blackwell Publishing. Teichman, J. (2001). Ethics and reality. London: Ashgate. Thomas, C. (1999). Female forms. Maidenhead: Open University Press. Treanor, D. (2014). Disability, critical thinking and personalism. Appraisal, 10(2), 1–15. Treanor, D. (2017). Does the Australian National Disability Insurance Scheme enhance personal quality of life? Research and Practice in Intellectual and Developmental Disabilities, 5, 58–69. https://doi.org/10.1080/2329701 8.2017.1408420 Tremain, S. (2005). Foucault, governmentality and critical disability theory: An introduction. In S. Tremain (Ed.), Foucault and the government of disability (pp. 9–27). Anne Arbor: University of Michigan Press.

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8 Conclusion

At the beginning I stated that the purpose of this book was to critically assess the social policies of inclusion for persons living with an intellectual disability. I have assessed the contemporary paradigm through an analysis of the philosophical values arising from neoliberalism that dominates the allocation of resources by governments in western nations. Neoliberalism is the dominant paradigm and it also exercises control over the structures used by service providers to deliver the funded services. This has a significant impact on how persons employed to work with persons living with an intellectual disability engage with such persons, since the emphasis for the former is more concerned with employment practices and organizational outcomes rather than on personal-planning (e.g., Clement & Bigby, 2008, 2010). The interrelationship between the social and economic policies was highlighted through a focus on culture and how social policies of inclusion have failed, in the majority, to impact the personal lives of persons living with an intellectual disability. There are some positive changes that have occurred in the ways persons living with an intellectual disability are now viewed as persons qua persons. In addition, the manner in which governments in western societies respond to personal needs has experienced structural changes since the © The Author(s) 2020 D. P. Treanor, Intellectual Disability and Social Policies of Inclusion, https://doi.org/10.1007/978-981-13-7056-4_8

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1950s. These developments have progressed following struggles by key individuals, lobby groups, families and, of course, by the efforts of persons living with an intellectual disability. Many individuals have worked tirelessly for such persons and among them, Niels Bank-Mikkelsen, Bengt Nirje, Rudolf Steiner, John O’Brien, Eunice Kennedy Shiver, Jean Vanier and Wolf Wolfensberger warrant particular mention. These persons provided leadership, campaigned for reform, offered an alternative vision and, importantly, actualized their principles and beliefs that contributed to an alternative vision of persons living with an intellectual disability as competent human persons. Moreover, through the organizations which they founded; they have offered many persons living with an intellectual disability opportunities to flourish. The voices of persons living with an intellectual disability are increasingly emerging in the contemporary discourse and while we, as a society, have not always been faithful in listening to persons, I argue we need to pay greater attention to self-advocacy services and structure consultation forums to further this momentum and build on the neoliberalism concept of user participation. In my analysis, I have tried to include the voice of persons living with an intellectual disability. However, there is scant and genuine attention paid by western governments to include persons in assessing systemic structures that affect the way services are funded, designed and delivered to persons living with the experience of an intellectual disability. For example, when Australia changed its methodology for funding disability services, persons living with an intellectual disability were not invited to participate in the process. On a positive note, there have been improvements in the way grants are allocated and research is being conducted in western nations. In many western nations, grants are only allocated if persons living with the experience of an intellectual disability are meaningfully engaged in the grant or research process. The merits to this approach are obvious and the dilemma for funders and researchers will be to balance inclusive research with expertise from the topic under investigation. In Ireland, Trinity College is inviting persons living with the experience of an intellectual disability to act as co-researcher in their research (Trinity College, 2019). Johnson and Walmsley (2003) have also discussed the role of persons living with the experience of an intellectual disability as co-researchers and

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analysed two major research projects to understand the lessons and learning from the projects. The Centre for Disability Studies (2019) in Australia is also another institute at the forefront of inclusive research and conducts workshops to train persons living with the experience of an intellectual disability to act as researchers. The historical and contemporary analyses I presented reveal that the lives of persons living with an intellectual disability have been and continue to be dominated by socially devalued roles. There are exceptions and many persons do and will always hold socially valued roles. My analysis is aimed at social policy qua policy. My intent might be idealistic, yet I believe it is possible if persons who are responsible for social policy apply rigor, a sense of realism and honesty to their practices. Understanding policy is a first step rather than the final telos. Social policies of inclusion are not a set of techniques or work tasks that need to be implemented. If they are presented as such then we deny and devalue the importance of any person and the lives for whom the policies are intended to improve. Accordingly, unless we, in whatever role we occupy, commit ourselves to realizing personalist principles in our interpersonal engagements, we will find ourselves enacting neoliberal values, which at best offer minimum success and at worst reinforce persons as incompetent and unable to enter into meaningful relationships. Applying rigor, sense of realism and honesty to social policies principles can be realized if, as I suggested, the key characteristics of personalism dominate our personal, cultural and societal ways of engaging with persons living with an intellectual disability. These characteristics are: • The cornerstone importance of the quality of relationships and social well-being—they are as Seligman (2011) argues “the pursuit of relationships is a rock-bottom fundamental of human well-being” (p. 21). • A particular concern for persons who might be experiencing disadvantage either relationally or materially. • The family as the primary foundation space where persons can experience love and support from other persons. • In grounding oneself in neighbourhoods, villages and cities, since this will build relationships amongst persons as the community as a whole.

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• Sharing power, consultations and slow decision-making as the most effective forms of organizational accountability. • A commitment to acting with justice (in a broad sense) and working towards reconciliation in personal, institutional and political spheres when injustice has occurred. • Using financial and other resources to strengthen and enrich robust personal, commercial, social and political relationships. • Prioritizing the importance of persons sustaining personal and social relationships, and paying attention to the interrelationships and welfare of all persons. I propose these characteristics since public policy never operates in a vacuum. The dominant cultural values, networks and economic ideology significantly influence policy. The neoliberalism paradigm permeates all spheres in society, and as we have seen, neoliberalism and its associated values determine the social policies of inclusion used by western governments. The effects see persons living with an intellectual disability socially and economically ostracized from their societies. A concerning trend we observed in the service provider market-place in Australia is the decrease in the number of service providers and, in the United Kingdom, the demolition (Stewart, 2016, p. xiii) of the welfare state. My concerns for Australia focuses on how government and larger not-for-profit sector organizations can listen to persons living an intellectual disability and develop systemic communication and consultation processes that represent, respect and respond positively to their voices. In the United Kingdom, my concerns include the use of an assessment process that fails to represent the bodily and cognitive integrity of persons living with an intellectual disability. The rhetoric of social policies of inclusion for persons living with an intellectual disability is inspiring in scope; however, they are less so in their execution. The research has demonstrated that this is a global phenomenon. Global social policies have changed the living conditions for persons living with an intellectual disability from large congregate care environments to smaller community living environments. However, persons continue to be captured by these environments and the cultural attitudes held by persons living without an intellectual disability and

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institutions. In other situations, where political, social or cultural revolutions were enacted, the new paradigms never gave power to pillars of the old regime. This appears to have occurred with these social policies. What genuine and committed efforts have been made by policy elites to incorporate persons living with an intellectual disability into decision-making process about the policies? The continued emphasis in western nations (this book included!) on written communication and lack of alternative means is shameful. As I pointed out earlier in the book, the minimum number of narratives as biographies or co-authored on persons’ lives is a gap that could be remedied if government and policy agencies deliberately funded co-research that would bring persons living with an intellectual disability front, centre and in control about how lives are lived. Personal narratives can act as a powerful and dignifying testimony to persons and honour their personhood. As we enter the third decade of the twenty-first century, we need persons living with and without an intellectual disability to embrace a new mantle of leadership and offer societies a vision of what a flourishing life can look like. That is, can we create spaces that offer all persons opportunities to personally flourish, engage in mutual relationships and participate in civil society. There are certainly academics (Bigby, Beadle-Brown, Carlson, Kittay, Kristeva, Krall McCray, McVilly, Parameter, Reinders) with a rich and nuanced corpus that build upon the innovative work of themselves and other. What we ultimately need is for all persons to reflect on their own personal relationships and ways of engaging with persons living with an intellectual disability to ascertain whether it enhances our personal value as persons and how our interaction is contributing to their well-being and the flourishing of ourselves and others.

References Centre for Disability. (2019). Inclusive research. Retrieved from https://cds.org. au/promoting-inclusion/inclusive-research/ Clement, T., & Bigby, C. (2008). Making life good in the community: As good as it gets? An overview of methodology and a synthesis of findings and recommendations. Melbourne: Victorian Department of Human Services.

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Clement, T., & Bigby, C. (2010). Group homes for people with intellectual disabilities: Encouraging inclusion and participation. Gateshead: Athenaeum Press. Johnson, K., & Walmsley, J. (2003). Inclusive research with people with learning disabilities, past, present and future. London: Jessica, Kingsley Publishers. Seligman, M. (2011). Flourish: A visionary new understating of happiness and well-being. New York: Free Press. Stewart, M. (2016). Cash not care: The planned demolition of the UK welfare state. London: New Generation Publishing. Trinity College Dublin. (2019). Publications. Retrieved from https://www.tcd. ie/Education/research/groups/ies/research-projects/

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Index

A

B

Ableism, 3, 43 Activities of caring, 174, 176–180, 182, 186–189 Amado, A., 10, 135, 154 Americans with Disabilities Act, 69 Arendt, H., x, xi Aristotle, 3, 24, 45, 46, 73, 74, 117, 137, 142 Australia, viii, 7–9, 42, 43, 51, 67, 69, 72, 73, 75, 97, 98, 101, 103, 106–110, 112, 137, 139, 140, 151, 152, 158, 159, 173, 174, 181, 183, 184, 188, 196–198 Autonomy, xii, 63, 66, 79, 95–97, 102, 105, 117, 118, 134, 135, 146, 157, 162, 187

Beadle-Brown, J., 104, 110, 111, 152, 166, 167, 174, 199 Being, viii, x, 24, 28, 30, 31, 36, 38, 54, 135, 136, 140, 142, 143, 156 Belong, x, xi, 35, 53, 70, 140, 152, 153, 155–159, 179, 188 Belonging, 7, 20, 30, 73, 76, 97, 112, 141, 151–168 Bengtsson, J. O., ix, 5, 20, 22, 24, 29, 30, 35 Bigby, C., 9, 47, 67, 76, 81, 110, 111, 113, 116, 152, 158, 159, 181, 188, 195, 199 Bio pouvoir, 133 Bio-power, 129, 132–138 Browne, B. P., ix, 20, 63 Buber, M., 20, 25–27, 31

© The Author(s) 2020 D. P. Treanor, Intellectual Disability and Social Policies of Inclusion, https://doi.org/10.1007/978-981-13-7056-4

229

230 Index C

D

Campbell, F., 3 Canada, 64, 69, 72, 97, 154 Canadian Charter of Rights and Freedom, The, 69 Canadian Human Rights Act, 69 Capability framework, 151, 160, 164, 166–168 Carling-Jenkins, R., 13, 61, 67, 98 Carlson, C., 139 Carlson, L., 1, 135, 177, 199 Clapton, J., 1, 140, 141, 152, 159, 165 Clegg, J., 67, 112, 116 Clement, T., 9, 110, 113, 116, 159, 195 Community, viii, x–xii, 1, 6–11, 13, 23, 26, 30–34, 36, 37, 43, 47, 51, 54, 61, 62, 70, 76–78, 81, 82, 94–100, 103, 107, 108, 110, 112, 113, 115, 116, 118, 119, 130, 135, 138, 139, 141, 143, 152, 154, 155, 157–160, 162, 163, 167, 168, 173–177, 179–182, 185, 186, 188, 190, 197, 198 Community living programs, 6, 13, 47 Continental philosophy, 3, 46 Convention on the Rights of Persons with Disability (CRPD), 69, 70, 93, 94, 104 Critchley, S., 3 Critique, 2–7, 47, 61, 93, 94, 133, 140, 145, 167 Culture, vii, viii, x, 2, 4, 6, 20, 27, 32, 38–41, 43, 48, 49, 53, 62, 64, 69, 70, 79, 111, 112, 118, 129–146, 157, 160, 175, 177, 179, 195

Deinstitutionalization, 8, 9, 62, 65, 66, 112 Disability Discrimination Act (C’th) 1995, 69 Disability Services Act (C’th) 1986, 69 Disablism, 3 E

Emancipation, 3, 6, 46, 64, 69, 93, 129, 145, 158 Emerson, E., 4, 6, 13, 74, 76, 82, 105, 116, 117 Employment, vii, 38, 49, 54, 62, 71, 72, 74, 77, 100, 103, 107, 139, 163, 178, 195 Enabling Good Lives, 43, 95 Etats Generaux du Handicap, 43 European Disability Strategy 2010–2020, 69 F

Fiske, S., 7, 78, 79, 81, 106, 184 Flourishing life, viii, x, 20, 23, 26, 39, 40, 130, 142, 152, 164, 182, 199 Foucault, M., 7, 129, 132–138, 176 Freedom, 29–34, 55, 62–64, 66, 79, 80, 99, 179 Friendships, xi, 4, 5, 11, 22, 23, 26, 30, 33, 34, 36, 37, 41, 54, 62, 73, 74, 76, 99, 137, 138, 141, 143, 153–155, 187 G

Gibson, E., ix, 63 Gig Buddies, 137 Glendinning, S., 3

 Index 

Goffman, E., 48, 62, 79, 80, 98–100, 102–104, 106, 111–113, 161, 184 Goode, D., 141

231

J

Jamrozik, A., 103 Judgements, 62–64, 78–80, 136 K

Hospitable, 55, 72 Hospitality, 7, 160, 161 Human dignity, 22, 23, 27–29, 36, 49, 116, 142–145, 175, 186 Human nature, 27, 33–37, 50, 51, 142, 143, 157, 164

Kittay, E. F., 1, 37, 117, 167, 177, 199 Knudson, A., 22, 29, 63 Krall McCray, L., 1, 199 Kristeva, J., ix, 1, 6, 20, 22, 39–55, 62, 63, 81, 96, 105, 135, 138, 199

I

L

H

Ideology, 3, 12, 23, 43, 48, 101, 115, 119, 130, 131, 137, 165, 189, 190, 198 Impairment, 2, 9, 45, 66, 67 Inclusion, vii, ix, x, 2–4, 6, 7, 9, 10, 12, 13, 19–22, 32, 39, 43, 47–50, 55, 61–82, 93–119, 129–146, 151, 152, 157–161, 163, 164, 167, 168, 173–190, 195, 197, 198 Integrity, 19–55, 119, 135, 164, 165, 175, 185, 188–189, 198 Interaction, 3, 19, 26, 27, 29, 30, 33, 34, 38, 40, 41, 43–50, 54, 55, 62, 65, 66, 80, 114, 130, 131, 136, 137, 141, 155, 161, 162, 165, 167, 188, 199 Interdependence, 9, 26, 31, 117, 152, 155, 156, 159, 187 Invading consciousness, 10, 13, 61–82 Ireland, 71, 72, 74, 196

L’Arche, 26, 154 Leifmotif, 19 Living, 12 Loneliness, 51, 52, 76, 77 M

Macmurray, J., ix, xi, 6, 10, 13, 19–27, 29–39, 43, 44, 50–55, 63–65, 81, 136, 142, 143, 177, 178 Marcel, G., 20, 22, 28, 29 Maritain, J., ix, 20, 63 Market-place, 8, 95, 96, 102, 103, 146, 198 McVilly, K., 4, 6, 10, 13, 72, 74, 76, 82, 117, 158, 199 Medical model, 69, 135, 138, 164 Modus operandi, 102 Moeller, C., 2 Mounier, E., ix, 5, 10, 20, 21, 63, 96, 177, 180

232 Index N

Narcissist identity wound, 42, 44–46 National Disability Insurance Agency, 103 National Disability Insurance Scheme (NDIS), 7, 10, 51, 69, 75, 94, 97, 101, 102, 104–109, 112, 113, 159, 173, 181, 184, 185, 188, 189 Neoliberalism, x, 20, 29, 44, 47, 50, 93–119, 129, 131, 135, 139, 146, 173, 182, 186, 189, 195, 196, 198 Netherlands, 75, 166, 167 New Zealand, 43, 72, 95, 183 New Zealand Public Health and Disability Services Act, 95 Nomen dignitas, 142 Normalization, 12, 67, 68, 98 North, M., 7, 78, 79, 106 Nouwen, H., 2, 135, 154 Nussbaum, M. C., 160, 164, 165, 167, 177, 185 O

OECD, 96, 101, 139 Oliver, M., 2, 9, 12, 67–69, 98, 138, 139, 161, 184 Ostracized other, 61, 62, 72–77, 143 Other, 8, 25, 29, 65, 72–77, 79, 109, 165, 185 Otherness, 132

PCS spheres, 5, 145 Personal flourishing, 11, 46, 51, 54, 68, 69, 97, 99, 100, 105, 108, 112, 113, 137, 162, 174–177, 180, 187 Personalism, ix, 3, 5, 6, 10, 12, 19–39, 43, 55, 63, 96, 138, 173, 176, 179, 180, 183–184, 187, 197 Personalization, 10, 97, 182–184, 186, 188 Person-centered planning, 104, 152 Personnes en situation de handicap, 40 Persons-in-relation, 19, 22, 23, 32, 36, 37, 45, 65, 105 Phenomenology, 133, 151, 163, 176 Philosophy, ix, x, 1, 3, 5, 6, 12, 19–21, 25, 26, 35–37, 43, 46, 50, 55, 63, 69, 96, 116, 118, 139, 145, 157, 163, 168 Praxis, 3, 4, 6, 7, 93, 94, 119 Productivity Commission, 10, 75, 102–107, 112, 113, 117 Psychoanalytic listening, 45 Pysical or psychical death, 42, 44 Q

Quality of life, 8, 51, 105, 110, 111, 175, 176, 185 Quibell, R., 157, 158 R

P

Parenting, 75 Parlêtre, 43 Parmenter, T. R., 10, 155, 156, 158, 159, 163, 165, 185

Reinders, H. S., 2, 20, 53, 74, 75, 96, 99, 112, 116, 117, 135, 136, 139, 141, 143, 152, 154, 160, 178, 199 Role-models, 141, 186 Rothman, T., 2

 Index  S

Sapere aude, 137 Shakespeare, T., 12, 68, 116, 117, 136 Sherry, M., 2, 10, 76 Singer, P., 27, 37, 136, 142 Social model of disability, 9, 39, 67–69, 98, 139, 157, 164, 168 Social pariah other, 61, 62, 72–77 Social policies, ix, x, 6, 7, 10–13, 19–22, 32, 47, 65, 77, 81, 93–119, 139, 142, 143, 151, 159, 167, 173–190, 195, 197–199 Social practices, 3, 4, 7, 119, 130, 131, 133, 135, 138 Social role valorization, 10, 12, 39, 41, 67, 68, 98, 116, 153 Stereotype Content Model, 78 Stigma, 79–81, 161 Striker, H., 3, 42, 138 T

Taylor, C., 161, 180 Taylor, H., 113, 118 Telos, 50, 197 Thompson, N., 5, 6, 13, 47, 48, 145, 160 Total institutions, 98–100, 102, 110–113 Treanor, D., 52, 177, 181, 188 Tremain, S., 46, 67, 69, 134, 135, 145, 176 U

United Kingdom, vii, 8, 53, 69, 71, 73, 74, 76, 94, 97, 110, 114, 136, 198

233

United Nations Convention on the Rights of Persons with Disability, 69, 70, 94 United States of America, 8, 9, 20, 51, 62, 66, 69, 73, 78, 79, 98, 99, 135 Universal Declaration of Human Rights, x V

Values, ix–xii, 5, 7, 12, 23, 24, 26–29, 32, 36, 38, 40, 43, 47, 48, 50, 54, 55, 62, 70, 71, 74, 75, 80, 81, 93–95, 100, 104, 105, 115–118, 129–131, 135, 137, 143, 146, 151, 157, 178, 180, 182–183, 189, 190, 195, 197–199 Vanier, J., ix, 20, 26, 63, 81, 135, 141, 142, 177, 196 Verdonschot, M., 6, 13, 47, 74, 76, 82, 117, 139 Vulnerability, viii, 6, 28, 29, 40, 45–48, 50, 52, 63, 129, 144, 146, 177, 187 W

Welfare services, 8, 101 Well-being, vii, 8, 23, 47, 51, 54, 65, 77, 97, 103, 107, 108, 111, 112, 114, 131, 132, 137, 143, 174–176, 197, 199 West, D., 3 Western nations, vii–xi, 1, 7, 9, 10, 32, 40, 42, 43, 47, 65–67, 70, 72, 79, 93–96, 98, 100, 115, 130, 131, 135, 156, 158, 159, 161, 173, 182–184, 195, 196, 199

234 Index

Williams, B., 145, 189 Williams, T. D., ix, 5, 20, 22, 24, 29, 30, 35 Wolfensberger, W., 10, 12, 41, 48, 68, 98, 116, 138, 155, 196

Y

Young, D. A., 157, 158 Young, I. M., 41, 48, 49 Young, L., 9, 110