Narrowed Lives

Front matter

Meaning, Moral Value, and Profound Intellectual Disability

STOCKHOLM

UNIVERSITY PRESS

Contents

Acknowledgements xv Authors and Their Contributions xix A Note on Language xxi

Chapter 1: Introduction 1 ‘But she can walk! People with PIMD don’t walk, do they? 1 The devaluing of persons with PIMD in philosophy 3 The exclusion of PIMD in disability studies 6 The meaning of intellectual disability — historical overview 10 Development of the Finnish intellectual disability services 14 Outline of the book 25

Chapter 2: Ethnography: Recruitment, Interpretation and Ethics 29

Who and where are people with PIMD? Finding and recruiting research participants 33

Developing research practices and research relationships 38

Embodied ethnography in practice: writing field notes, constructing interpretation 47

On the analysis 53

Chapter 3: Conceptions of Competence 57 A person versus F73 57 F73 Profound mental retardation 57 Persons ‘behind impairments’ 59 Hesitation around cognitive capacity 62 Production of knowledge and re-minding persons 66 Profound intellectual disability formed by care practices 71 Enabling change 80 Conclusion 84

Chapter 4: Social Lives 87 Introduction 87 Social participation and persons with PIMD 88

Community living and participation in the policy texts 91 The social communities of the research participants 95 Persons with PIMD as social beings 97

Care practices and social lives in group homes 100 Conclusion 108

Epilogue: Ella at a rock concert 110

Chapter 5: Age-Appropriate Lives 113 Introduction 113 What difference does age make? 114 Hugo 116 The meaning of youth 118 Youth talk and the post-institutional care system 121 Youth lost in the service system 123 Conclusion 126 Epilogue: making sense of age-appropriateness 128

Chapter 6: Sexuality 135 Introduction: confronting the denial 135 Interpreting communication and consent 138 ‘Do no wrong’ equals ‘do nothing’? 141 What is sex? What is fair? 144 Conclusion: how to move forward? 149

Chapter 7: Animalised Lives 155 Animality and disability: is there a common ground? 155 Is it wrong to compare disabled humans to animals? 158 Animal liberation as a way to disability liberation? 160 Animality in practice: architecture 166 Warehousing versus caring 169 PIMD asa menace 172 Conclusion 174

Chapter 8: Conclusion 177

Appendix: On Moral Status 185 Introduction 185 1. Equality as a Moorean moral belief 189

2. Grounding moral status 193

3. Intrinsic properties as the grounds of moral status 195

4. Relational accounts of moral status 199

5. A further response to moral individualism is possible 206 6. Possible personhood and the virtue of empathy 209 Conclusion 212

Analysed Policy Documents 213 References 215 Index 243

Acknowledgements

This book is based upon a research project entitled Profound Intellectual and Multiple Disabilities and a Good Life, funded by the Academy of Finland (SA 275988), which we acknowledge with gratitude. We thank our colleague Sonja Miettinen for her contributions in the data collection and initial analysis of it. We also thank our research assistant Johanna Snellman for her invaluable help in transcribing and coding the data.

We would like to thank two of our colleagues who were pivotal in the making of this research project. Eva Feder Kittay’s work inspired Simo to engage with the philosophical issues related to moral status. Discussions with Eva, and visiting the Center for Discovery (https://thecenterfordiscovery.org), where her daughter Sesha lives, were crucial motivators for Simo to understand better the everyday lives of persons with profound intellectual and multiple disabilities. We perhaps do not agree with Eva on everything — and she probably does not agree with everything said in this book. But her passion for what is right and fair has truly been an inspiration without which this project and this book would not have materialised.

Nick Watson initially posed Simo the idea of forming an empirical research project building upon the philosophical debates on moral status and profound intellectual disability. Nick helped Simo to focus the research agenda, and has been a tremendous support throughout the project. And, considering that Nick is a sociologist, he is actually a lot of fun.

Especially in the beginning of the project, the members of our advisory group provided us with invaluable insights and advice in relation to the ethnographic fieldwork in particular. Thank you, Chris Hatton, Bill Hughes, Lucy Pickering, Sara Ryan, Ben Simmons, Kerstin Stalker, John Vorhaus and Nick Watson.

In June 2017, we organised a multidisciplinary workshop by the Baltic Sea just outside Helsinki, where scholars from the fields xvi Narrowed Lives of anthropology, disability studies, law and philosophy presented and discussed work in progress in relation to profound intellectual disability. Thank you, Ben Curtis, Marion Godman, Matti Häyry, Don Kulick, Eva Feder Kittay, Erik Olsman, Chrissie Rogers, Lucy Series, Tom Shakespeare, Ben Simmons, Stacy Clifford Simplican, John Vorhaus, Jan Walmsley, Nick Watson and Jonathan Wolff. Three days with this group of people was an unforgettable celebration of intellectual rigour, ethical engagement and academic fellowship.

We are indebted to the following friends and colleagues who contributed to this book by discussing with us, providing us with information or reading and commenting different parts of the manuscript: Liz Adams Lyngback, Jan Grue, Matti Häyry, Heli Leppala, Markku Mattila, Mina Sedem, Tom Shakespeare, Magnus Tideman, Hannu Vesala and Nick Watson. Presenting work in progress in conferences and research seminars has also been crucial for the development of this book’s analyses and arguments. We would especially like to thank participants in research seminars at the University of Amsterdam, the University of Glasgow, Lund University and the University of Southampton.

Don Kulick read the whole book manuscript. With great patience, as well as uncompromising frankness and professionalism, he provided us with detailed, critical comments that helped us to make this book a lot better than it would otherwise have been. We are privileged to have a colleague like him. Thank you.

We also thank two anonymous reviewers and members of the Editorial Board for their constructive comments for the first draft of the manuscript.

We are indebted to the Department of Special Education at Stockholm University, and its head, Diana Berthén, for providing financial support that enabled this book to be published in open access format. Reetta would also like to thank ALL-YOUTH project (SA 312689) for the chance to finalise this book while working in the project.

Finally, we offer our deepest gratitude and debt to those who cannot be named: the care workers that allowed us to follow and take part in their work, and the family members who gave us the permission to take part in the lives of our research

Acknowledgements xvii participants, and who agreed to talk to us about their experiences. Most importantly, we thank our research participants Anna, Ella, Frida, Hugo, Leo and Sebastian, who allowed us to be parts of their lives for a short period of time. Our aim was to understand their lives better, and possibly somehow contribute to making things better for them.

Authors and Their Contributions

Simo Vehmas is professor of special education at Stockholm University, Sweden, and a visiting professor at Høgskolen i Innlandet, in Lillehammer, Norway. He recently co-edited, with Nick Watson, the Routledge Handbook of Disability Studies (2nd edition).

Reetta Mietola works as a research fellow at the University of Helsinki, Finland, where she directs a four-year research project on Finnish disability activism in past and present.

Benjamin L. Curtis is a senior lecturer of philosophy at Nottingham Trent University, United Kingdom, with research interests in ethics and metaphysics, and the intersection between the two.

The research project which this book is based upon was conceived by Simo. The empirical data was collected by Reetta, and Sonja Miettinen (Sonja took no part in writing this book). The empirical findings were discussed by the three of us throughout the project. The analysis of the data was discussed by Simo and Reetta during the writing process of the book. Simo wrote Chapters 1, 6,7 and 8. Reetta wrote Chapters 2, 3 and 4, which were revised and edited by Simo. Reetta and Simo wrote Chapter 5 together. Benjamin and Simo wrote the appendix.

A Note on Language

We have chosen the term ‘intellectual disability’ instead of terms like ‘learning disability’ or ‘learning difficulty’ simply because it is the generic term used in the international scientific community. While one may disagree the appropriateness of a given term, at least one knows roughly what the term ‘intellectual disability’ means and to what kinds of people it is usually applied to. As for the expression persons/people with PIMD, we use it to refer to a group of people that has been categorised under the diagnostic category of profound intellectual and multiple disabilities. The reason we mostly refer to them specifically as persons is that this project was founded upon the ethical notion that they are persons in the moral sense of the term, meaning that they are as valuable and worthy of respect as any other human being. When we write about our individual research participants with PIMD, however, we use their names (all pseudonyms). We hope that the reader can tell when we talk about a class property, a social construct called PIMD, rather than of the individuals to whom this label is applied to because we are very much aware that the term PIMD tells very little about them as individual human beings.

However, we acknowledge that the PIMD abbreviation is annoying, perhaps even disrespectful for some readers — despite the fact that many disabled people refer to themselves with abbreviations (e.g. ‘people with MS’, ‘MND’, ‘ALS’ or ‘SCI’). Having said that, using profound intellectual and multiple disabilities throughout the book would make the text too burdensome. Also, we do not want to use exclusively the term profound intellectual disability because in our view it is important that the reader is reminded throughout the book that this group of people do not merely have an intellectual disability but multiple disabilities as well. Therefore, we mostly use expression persons or people xxii Narrowed Lives with PIMD. As for ‘person-first’ language (‘person with disability’) and ‘disability-first’ language (‘disabled person’), we follow the example of scholars such as Kulick and Rydström (2015), Linton (1998) and Wendell (1996), and alternate between the two.

Chapter 1: Introduction

‘But she can walk! People with PIMD don’t walk, do they?’

It was either Reetta or Simo who expressed this doubt during a discussion we had during the process of recruiting research participants for our fieldwork. The discussion was about walking — the ability to be able to walk, or not — and it arose in relation to a middle-aged woman, Ella. We thought Ella was especially interesting regarding our research because she challenged the conventional understanding of profound intellectual and multiple disabilities (PIMD) as people who lack all competence. It is usually assumed that persons with PIMD are not able to be physically active, let alone walk.

Most studies on motor activity do not include people with PIMD, which means that the extent to which individuals who have been given that diagnosis are in fact physically active is still largely unknown (van der Putten, Bossink, Frans, Houwen, & Vlaskamp, 2017). However, Simo ended up having a discussion with a medical professional who had long experience in working with people with intellectual disability about the definition of PIMD. For her, it was important to distinguish PIMD as a category in which individuals simply do not walk. Simo told her about Ella with the goal of opening a discussion on the medicalised narrative of PIMD. The doctor smiled politely and replied, ‘Well, if she walks, she is not an individual with PIMD’ End of discussion.

The question of walking illuminates epistemic power struggles surrounding PIMD. Who gets to represent the voice of those who

Vehmas, S. and Mietola, R. 2021. Narrowed Lives: Meaning, Moral Value, and Profound Intellectual Disability. Pp. 1-27. Stockholm: Stockholm University Press. DOI: https://doi.org/10.16993/bbl.a. License: CC-BY 4.0.

have very limited means to express it themselves? How to reliably separate persons with PIMD from others within the category of intellectual disability? Most of all, the question of whether people with profound intellectual and multiple disabilities possess the ability to walk demonstrates what defining PIMD is often all about; it is about ticking boxes of deficiency, of what one is not able to do (see Chapter 3). In Ella’s case, all the boxes regarding intellectual and adaptive functioning (e.g. American Psychiatric Association, 2013, p. 33) seem to get ticked. Except that she could walk. So, is she a person who can justifiably be put under the ambiguous category of PIMD, and what difference does that make anyway?

Conceptions presented in major diagnostic manuals about persons with PIMD direct the focus and content of their care (see Chapter 3). They are conceptualised as a group of people who need constant help in just about everything: they have extremely limited capacities to understand instructions, they are incapable of expressing themselves verbally, they are incapable of taking care of their basic needs, and so on (e.g. American Psychiatric Association, 2013; WHO, 1992). Philosophical theories of wellbeing tell us that what makes one’s life go well may depend on its experiential quality, whether it satisfies one’s desires, or whether it is in line with some objective criteria for a good quality of life (e.g. Wasserman & Asch, 2014). If one is seen to lack understanding, communication, and the ability to do much at all, it would be only logical to think that people with PIMD have extremely limited possibilities regarding well-being and a good life.

Conceptions about the nature of PIMD and its significance regarding quality of life set the foundations and limits for the services that ultimately make up the lives of people with PIMD - lives that are very much embedded in institutional practices of disability service systems. The expression ‘narrow lives’ was used by one of the care workers in our data when he was explaining the lack of engagement and effort in the service system to make the lives of persons with PIMD more active, more meaningful. The impairment effects related to PIMD have undeniable consequences and set boundaries for persons in this group. But it was not the impairments of people with PIMD that implied a

‘narrow life’ in the care worker’s account. Rather, it was limited resources, combined with a mechanical, unimaginative care culture and slight ambition or means to find out what a good life might mean for a particular individual with very limited means to express his or her dreams, wishes, hopes and desires.

What this book aims to do is to shed light on what ‘narrow lives’ means in the case of persons with PIMD, why their lives are narrow/(ed), and what the ethical implications of all this are. In order to do this, in the following chapters we will provide theoretically informed empirical descriptions about the lives of our research participants on issues such as the way conceptions of their competence manifest in care work practices, or what explains the lack of social relations in their lives. Also, we will explore related theoretical issues such as the significance and meaning of chronological age in the lives of persons with PIMD, and the ethical complexities related to enabling their sexuality, as well as one of the main motivation for our study: the issue of the moral status, namely why people with PIMD merit the same moral consideration as the rest of us.

The devaluing of persons with PIMD in philosophy

Whether or not Ella is a person with PIMD, she is referred to as being someone with ‘profound intellectual disability’. That was crucial regarding our research interest. The research project, and this book, were initially motivated by philosophical debates about the personhood and moral worth of people with profound intellectual disability. In those debates (which will be analysed in the appendix),'’ physical impairments have a marginal role but limited cognitive and emotional capacities are at the centre of the debate. They are seen crucial in determining who is worth of full moral consideration and who is not. To lack these capacities also implies a lower level of well-being than is attainable to so-called

* This philosophical analysis included in the book as an appendix was a parallel, collaborative project between Benjamin and Simo, adding to our ethnography. It differs from the rest of the book in in that it concentrates on unpacking the strengths and weaknesses of different philosophical arguments without discussing the issue in the light of our data.

normal people. These kinds of views motivated Simo to develop a research project that would examine, in the light of empirical data, what makes a good life for this group of people. The lived experiences of persons with PIMD would be observed in various contexts. We would also talk to their families and carers, and this way construct a detailed account of their everyday lives. The aim was to rectify the lack of empirical data that makes philosophical discussions often so sterile.

Simo had been struggling with ethical issues related to intellectual disability on and off since the late 1990s, and he got drawn back to discussions on moral status when he first familiarised himself with the debate between the prominent philosophers Eva Feder Kittay, Jeff McMahan and Peter Singer (e.g. Kittay, 2005, 2010; McMahan, 2002, 2009; Singer, 1993, 2009). There are several puzzling features in these debates. The first is the way McMahan and Singer portray humans with PIMD as psychologically comparable to pigs and dogs, the kinds of beings who are able to attain only the level of well-being that of ‘a contented dog’ (McMahan, 2002, p. 153), and whose moral worth is consequently lower than that of so-called ‘normal’ people. To many people, such comparison means that one would need to see a person with PIMD as a dog or pig. And that is ‘the moment of revulsion’, as Eva Kittay (2010, p. 399) argues. But, even if one did not find the comparison offensive as such, the way it is presented in McMahan’s and Singer’s texts is, at least in our reading, dismissive, even contemptuous of people with PIMD and the meaningfulness of their lives. The second perplexing feature in these kinds of casual remarks in McMahan’s and Singer’s texts is that they are made without any appeal to (or real knowledge of) empirical evidence.

Eva Kittay (2005, 2010) has criticised McMahan and Singer for their lack of engagement with the lived realities of persons with PIMD. She has a daughter, Sesha, who is now a middle-aged woman with profound intellectual and multiple disabilities. Kittay has used her personal experience and knowledge about her daughter to refute the claims made by McMahan and others. However, she engages only very little with empirical research literature on PIMD. Thus, philosophical debates on the moral significance of PIMD are mostly informed by personal experience or anecdotal evidence about intellectual disability. This is partly because there is so little actual research on the lives of people with PIMD. There is a significant body of research literature on the quality of life of persons with intellectual disability (in relation specifically to persons with PIMD, see Nieuwenhuijse, Willems, van Goudoever, Echteld, & Olsman, 2019), but, as Lyons (2011) has demonstrated in his extensive literature review, most of the pertinent research on quality of life has focused on persons with mild and moderate intellectual disability, has been quantitative, and has not engaged in depth with ethics and politics.

A basic question prompted by people with PIMD is how society might engage with them in ways that ensure their dignity as individuals, and facilitate their flourishing. People with PIMD challenge liberal understandings of citizenship because their rights are often not balanced by the duties usually associated with citizenship (such as the duty to enter into gainful employment) (e.g. Kittay, 1999; Nussbaum, 2006). They complicate the ethics of reciprocity in that they do not necessarily offer gratitude or reciprocity for the services and goods they receive from others.

A striking feature of the philosophical discussions about people with PIMD is that they often proceed in a largely theoretical modality, as though there is little difference between the people under this category, who, in fact, are as diverse as any other group of people. In order to nuance understanding of the lives lived by people with PIMD, we need material that focuses on them as individuals. This book contributes to that goal. It will focus on documenting the meanings of a good life for people with PIMD, and the practices that enable (or not) such a life in the institutional settings that ultimately dictate what kinds of lives they live. What kind of moral, social, interactional and affective value is accorded to individuals with PIMD by the people who work and live with them most closely? How do practices of care contribute (or not) to people with PIMD being recognised as fellow human beings worthy of dignity?

People with PIMD cannot reach levels of well-being that require highly developed intellectual capacities. In many philosophical accounts this implies that they cannot live the good life: a life that is line with some objective moral criteria (e.g. in Aristotle’s eudaimonian ethics, living in accordance with virtue and reason). We decided to put aside objective criteria for the good life, and try to see what a good life could mean to people with PIMD (see Kittay, 2019, pp. 49-54). What kinds of things and activities seemed to be important or enjoyable to our research participants? Did the service system provide persons with PIMD a genuine opportunity to pursue them?

We were not convinced that any particular theory of well-being or good life would be expedient in unpacking the lived realities of people with PIMD, or engaging with the ethical issues PIMD gives rise to. The theory that was most discussed at the beginning of the project as a potential analytical tool was the capabilities approach, a theory of social justice developed by the economist Amartya Sen (1992) and the philosopher Martha Nussbaum (2006). The capabilities approach argues that justice should be evaluated in terms of what valuable doings or beings people are capable of achieving. Also, a society has a duty to ensure that all citizens have a minimum level of a number of central capabilities that are necessary for human dignity and well-being. Such capabilities include, for example, bodily health, bodily integrity, affiliation and control over one’s environment (Nussbaum, 2006, pp. 69-81).

The capabilities approach worked in our project as a framework that informed our discussions regarding what things generally are considered important for a good life and social justice. Rather than setting in advance particular theories that would be applied in data analysis, we thought it would be more expedient to proceed inductively, to see which activities, arrangements, surroundings and people are present in the lives of persons with PIMD and only after that ponder what theory would be suitable to the analysis of the issue (such as age-appropriateness or sexuality) in question.

The exclusion of PIMD in disability studies

One of our aims with this book is to counteract the erasure of persons with PIMD in the disability studies literature. Disability studies as a discipline has grown out of a need for alternative forms of knowledge concerning disability and disabled people. The discipline is characterised by its close relationship to the disability rights movement, sharing a political commitment to illuminating and eradicating social discrimination faced by disabled people. In order to implement this political commitment, new approaches to research practice have been sought after the realisation that research on disability has historically in its part marginalised disabled people by producing knowledge about them, not for and with them. Disability studies has aimed at developing an alternative research paradigm that is inclusive of and empowering to disabled people. In order to change the social relations of research production (Oliver, 1992), disability scholars turned to critical social research traditions to develop an ‘emancipatory research paradigm’ for disability studies. This paradigm entails, for example, a political commitment to the struggles of disabled people for self-emancipation and willingness only to undertake research that will be of practical benefit to the self-empowerment of disabled people (Barnes, 2003; Barton, 2005; Stone & Priestley, 1996). While not all research in the field of disability studies can be characterised as emancipatory, there is a strong consensus among the discipline concerning its political aim of promoting social justice by listening to and representing the voices of disabled people.

Considering the drive towards the empowerment of disabled people within disability studies, it is astonishing that people with PIMD are virtually missing from key theoretical and methodological discussions, as well as from empirical studies in the field (e.g. Barnes, 1990; Davis, 2013a; Oliver, 1990). It is thus reasonable to argue that people with PIMD are probably the most marginal group of disabled people both in society and in research (Boxall & Ralph, 2010). This group is the last to benefit from the changes in the policy and service system that have followed from the political recognition of disability rights. In Finland this has manifested, for example, in living arrangements: group homes were for long considered to be insufficiently functional for individuals with PIMD, with the result that they were forced to live in institutions longer than people with ‘milder’ forms of intellectual disability. And, still, people with PIMD often continue to live heavily institutionalised lives (Mietola, Teittinen, & Vesala, 2013, pp. 86-90). At the same time as the social positioning of persons with PIMD calls for academic attention, they have been mostly neglected by disability studies. It seems that the emancipatory research paradigm, with its emphasis on self-empowerment, has made some disabled voices heard, but it has not been able to offer alternative approaches to include those who may not be able express themselves clearly. As Barton (2005, p. 325) notes, there is a need to pay more attention to ‘the extent to which we are aware of and able to engage with some voices’, particularly voices of ‘those individuals who do not communicate through speech’.

Disability studies has traditionally concentrated on examining various social, structural and cultural practices and mechanisms that exclude disabled people from social participation. In the materialist Marxist tradition, the focus has been on the material, mainly economic factors that have placed disabled people at the fringes of society (e.g. Oliver, 1990). Various social constructionist and poststructuralist accounts, on the other hand, have produced genealogies and cultural analyses exploring the origins of ableist, discriminatory and oppressive ideas and values (e.g. Goodley, 2014; Hughes, 2020). Since the focus in virtually all theoretical traditions in disability studies has been on societal and cultural factors, individual experiences and properties, such as impairments and their role in people’s disablement, have often been ignored (Vehmas & Watson, 2014). Unsurprisingly, intellectual disability (especially PIMD) has been at the margins of disability studies because it involves the kinds of serious, allinclusive impairment effects that cannot be explained merely by social arrangements (Chappell, 1998; Shakespeare, 2006; Vehmas, 2010).

Thus, apart from a few exceptions (Bjérnsdottir, Stefansdottir, & Stefansdottir, 2017; Brigg, Schuitema, & Vorhaus, 2016; Jones, 2004), PIMD has been researched mainly outside disability studies, in an impairment-specific research tradition that does not shy away from alliance with medical research (in journals such as the American Journal on Intellectual and Developmental Disabilities). However, there is body of work that recognises the social and cultural elements related to disablement but that does not necessarily identify with disability studies or any of its theoretical narratives as such (e.g. Bigby, Clement, Mansell, & Beadle-Brown, 2009; Clement & Bigby, 2009; Goodwin, 2020;

Granlund, Wilder, & Almqvist, 2013; McCormack, 2020; Nind, 2007; Pawlyn & Carnaby, 2009; Samuel, Nind, Volans, & Scriven, 2008: Simmons & Watson, 2014; Talman, Wilder, Stier, & Gustafsson, 2019; Tilley, Ledger, & Haas, 2020; Vorhaus, 2013, 2014). Alongside these kinds of contributions, our work can be seen to be in the same league as the work of Clement and Bigby (2013) on living arrangements, Goode’s (1994) ethnographic research on children with congenital deaf-blindness and intellectual disability, Johnson and Walmsley’s (2010) contribution on the meaning of a good life with reference to current policies and ideologies, and Vorhaus’s (2016) empirically informed philosophical work on children with PIMD.*

Notwithstanding some similarities, this book is different from the ones mentioned above. This is because of the way our work is based on the fusion of the research method, the focus of the research, and the ways the findings have been theorised: this book is based upon ethnographic fieldwork with adults with PIMD, and many of the empirical findings are analysed philosophically. There is very little ethnographic research on adults with PIMD and, as a result, there is only very little engagement with some aspects of their lives, like the significance of age and related issues such as sexuality.

In what follows, we will present an overview of the history of intellectual disability, and concentrate on issues that relate to our research interests such as the conceptualisation and moral significance of intellectual disability. The second subchapter unpacks the history of the Finnish intellectual disability service system and its underpinning values and ideologies.

> To some extent, our work resembles McKearney’s (2018a, 2018b, 2019) anthropological research, which aims to re-evaluate the agency of those with significant intellectual disability. His work is highly interesting but we have difficulties relating to it mainly because of its reliance on theology. The care work that McKearney observed, provided by the Christian charity called LArche, was motivated by religious, at times sentimental ideas that to us would merit a more critical appraisal than McKearney’s sympathetic reading. Also, it is a somewhat unclear whether his research participants were, in fact, people with PIMD.

The meaning of intellectual disability — historical overview

Naming people with limited intellectual capacities has a long and colourful history. Within the last century alone, persons with intellectual disability have been seen to suffer from backwardness, cretinism, developmental disability, dullness, feeble-mindedness, idiotism, imbecility, intellectual handicap, intellectual impairment, learning difficulties, mental deficiency, mental handicap, mental retardation, moronism and oligophreny, just to name a few classificatory terms (Goodey, 2011, p. 4). It would be simplistic to assume that these terms are merely different names of the same, objectively existing phenomenon. Each of them portrays slightly different kinds of individual depending who says the term in question, who hears it, and where and when he or she hears it.