# NARROWED LIVES

NARROWED LIVES

**What is day-to-day life like for people with profound intellectual and multiple disabilities who live in group homes? How do they express their desires and wishes? How do care workers think about them and treat them? Do they have basic rights to activities most of us take for granted: activities like sociability, sexuality, and**

**is like in Finnish group homes where adults who have profound intellectual and multiple disabilities live their lives. It documents how care workers strive to guarantee individuality and dignity against a backdrop of scarce resources and misguided policies. The book is a sobering account of how the lives of people with profound intellectual and multiple disabilities are restricted, not primarily because of their impairments, but, rather because well-meaning intentions do not always work out**

 **is an illuminating portrait of what life**

**moral affirmation?**

**that way in practice.**

**Narrowed Lives**

Vehmas & Mietola

**Meaning, Moral Value, and Profound Intellectual Disability**

> **Simo Vehmas Reetta Mietola**

# **Narrowed Lives**

#### **Meaning, Moral Value, and Profound Intellectual Disability**

*Simo Vehmas & Reetta Mietola*

Published by Stockholm University Press Stockholm University SE-106 91 Stockholm, Sweden www.stockholmuniversitypress.se

Text © The Authors 2021 License CC-BY 4.0

Supporting Agency (funding): Department of Special Education, Stockholm University

First published 2021 Cover Illustration: "Kristo" Cover illustration credit: Jyri Pitkänen Cover designed by Stockholm University Press

ISBN (Paperback): 978-91-7635-151-2 ISBN (PDF): 978-91-7635-148-2 ISBN (EPUB): 978-91-7635-149-9 ISBN (Mobi): 978-91-7635-150-5

DOI: https://doi.org/10.16993/bbl

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

To read the free, open access version of this book online, visit https://doi.org/10.16993/bbl or scan this QR code with your mobile device.

# **Endorsements from Readers**

For people with profound intellectual and multiple impairments, what is a good life? Who is responsible for trying to ensure that such a life is possible? This sobering, no-nonsense book about individual people who live in Finnish care homes is a timely and vital contribution to thinking about both the possibilities and the limitations of care, empathy and moral engagement.

> — Don Kulick, Distinguished University Professor of Anthropology, Uppsala University

This important book boldly challenges many pervasive and harmful assumptions about people with profound disabilities. Through powerful illustrations of how the external world can constrain, limit, and deny the worth of disabled persons, the authors confront difficult but essential questions that must be asked in order to combat ableism and enable flourishing.

By combining philosophical analysis with in-depth research into lived experience and relationships, this book is a call to critically reconsider how meaning is assigned, and how moral values are embodied in everyday practices. *Narrowed Lives* boldly asserts that the varied and complex lives of people with profound disabilities need not be narrow at all.

— Licia Carlson, Professor of Philosophy, Providence College

Provocative… this book provides answers to questions of the human that unconsciously abound in any conception of intellectual disability and, crucially, urges all researchers to consider the lives of people with intellectual disabilities.

— Dan Goodley, Professor of Disability Studies and Education, University of Sheffield

# **Editorial Board**

The role of an Editorial Board working with book projects at Stockholm University Press is to be directly involved with the editorial quality assurance process, meaning that they read and comment on the book in all stages as well as suggest reviewers to invite. Their role is to ensure that the peer-review process is to be trusted and that the author receives constructive feedback in order to improve the academic quality of the book.

The book Narrowed Lives is not included in any of the book series produced by Stockholm University Press, and the Editorial Board is, therefore, specially invited to contribute with their expertise to this particular project.

The responsibilities of an Editorial Board at Stockholm University Press include:

## **Editorial Board**

# **Peer Review Policies**

Stockholm University Press ensures that all book publications are peer-reviewed. Each book proposal submitted to the Press will be sent to a dedicated Editorial Board of experts in the subject area. The full manuscript will be reviewed by chapter or as a whole by two external and independent experts.

A full description of Stockholm University Press' peer-review policies can be found on the website: http://www.stockholm universitypress.se/site/peer-review-policies/

The Editorial Board for Narrowed Lives applied a single-blind review while assessing the manuscript. Meaning that the author's name was revealed to the reviewers, while the reviewer names were only disclosed to the author at the end of the editing process.

#### **Recognition for reviewers**

Stockholm University Press and the Editorial Board would hereby like to express their sincere gratitude to the reviewers of this book:

#### **Reviewers of the Book Proposal**

#### **Reviewers of the Book Manuscript**

*For Eva Feder Kittay*

# **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 as a 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.

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 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 Lyngbäck, Jan Grue, Matti Häyry, Heli Leppälä, 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 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*  *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

#### **How to cite this book chapter:**

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),1 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

<sup>1</sup> 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 (Björnsdottir, 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.2

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.

<sup>2</sup> 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 L'Arche, 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.  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.

It is impossible to evaluate the number of people with intellectual disability in different eras on the basis of archaeological data (human remains, grave goods, art objects, ancient written descriptions) or legal and medical records (Berkson, 2004; Goodey, 2011; Scheerenberger, 1983). This is because of the problems related to defining intellectual disability; it is based on the evaluation of behaviour, and thus inevitably context-bound. Undoubtedly there have always been people who have had difficulties in understanding and executing basic everyday activities. However, the content and the significance of those activities to human lives has always depended more or less upon the social context.

So, one may well analyse what 'simple-mindedness' meant in Plato's texts (Goodey, 1992), or 'idiocy' in medieval English law (Neugebauer, 1996) but ultimately these historical concepts did not have all that much in common with current notions of human intelligence or intellectual disability. Goodey (2001) argues that intellectual disability as a diagnostic category is very much a modern product that started to slowly take shape in the 17th century, when for the first time humans were seen as persons, phenomenological continuums that started from birth and ended in death. For the first time, many human characteristics were seen as congenital, incurable individual properties that constituted a person's identity. Also, the growing tendency to separate mind from the body as distinct entities, as well as classifying intelligence and rationality as species-specific, laid the foundation for the category of intellectual disability; while the Greeks and their medieval successors defined rationality loosely as a metaphysical entity that could belong to gods, humans and sometimes even animals, now rationality was deduced from each species' natural endowments (Berrios, 1995, p. 226; Goodey, 2001, pp. 7–9; 2011, p. 17). The new, modern understanding thus consisted of three ingredients, which conceptualised intellectual or mental deficiencies as '(a) congenital and incurable, (b) purely mental and (c) classifiable by strict laws of nature' (Goodey, 2001, p. 9).

Understanding and defining intellectual disability did not rise at that time from psychology (which was not a discipline separate from others) but, rather, it was discussed under the heading of philosophy (Goodey, 2001).  He argued, for example, that 'the mad' have the capacity to form and have ideas but they join them together wrongly and so make wrong propositions, whereas 'the idiot' scarcely puts ideas together or has the capacity to reason at all (Locke, 1998, book II, ch. XI, 13). Locke's thought, and the weight he put on the ability to reason and think abstractly, had a great effect on modern, medicalised classifications and definitions of intellectual disability (Goodey, 1995; Goodey & Stainton, 2001). For Locke, these faculties differentiated humans from animals, which in its part gave room for the growing notion that idiots were not essentially human. Locke argued that all human beings were born as blank slates but gradually developed psychological capacities to be autonomous reasoners. Some humans, however, stayed in the state of idiocy without developing the capacity to form abstract ideas (Goodey, 2001, pp. 12–13).

Altogether, the meaning of idiocy was in flux due to various changes in legal, religious and medical thinking, which all were interwoven. Medicine made tremendous advances in the 19th century and part of that progress was the increasing medicoscientific explanations of intellectual disability. The rate of one's developmental disability was determined mainly on the basis of one's speech and language (Scheerenberger, 1983, p. 63). For example, Jean Etienne Dominique Esquirol (1772–1840), an early French pioneer in psychiatry, divided individuals with intellectual disability into imbeciles and idiots: imbeciles use limited intellectual, affective and verbal facilities but would 'never reach the degree of reason, nor the extent and solidity of knowledge, to which their age, education, and social relations, would otherwise enable them to attain', whereas idiots represented 'the utmost limit of human degradation': 'They hear, but do not understand; they see but do not regard. Having no ideas, and thinking not, they have nothing to desire; therefore have no need of signs, or of speech' (Scheerenberger, 1983, p. 54).

In the late 19th century, attention turned to intelligence testing and to the heredity of intelligence and intellectual disorders. One of the most important pioneers of intelligence testing was Francis Galton, the father of eugenics, alongside the French physicians Alfred Binet and Theodore Simon, whose psychometric tests were largely used in the pursuit of finding children who were uneducable (Harris & Greenspan, 2016, p. 14). Intelligence was assumed to be hereditary and stable, a universal, objective and a measurable phenomenon that consisted of things such as information-processing, logical reasoning and abstraction (Goodey, 2011, pp. 5–9, 39–46). Intelligence tests were believed to be scientific and objective, and, in part, they legitimised the category of intellectual disability and especially the institutional responses to individuals categorised as such (e.g. segregation to special schools and institutions). But, at the same time, the various limitations of such tests were acknowledged that resulted in frequent revisions to enhance each test's reliability and validity. Intelligence tests became increasingly suspect, especially regarding their discriminatory effects to, for example, ethnic minorities (Scheerenberger, 1987, pp. 27–33). Although intelligence tests still play a role in the diagnostics of intellectual disability, IQ test scores are now seen as approximations of conceptual functioning that 'may be insufficient to assess reasoning in real-life situations and mastery of practical tasks' (American Psychiatric Association, 2013, p. 37).

The early diagnostic terms such as idiocy and imbecility continued to exist in diagnostic manuals until the mid-1900s, when the American Association on Mental Deficiency (later the American Association on Mental Retardation, AAMR, and since 2007 the American Association on Intellectual and Developmental Disabilities, AAIDD) introduced the term 'mental retardation' in 1961: 'Mental retardation refers to subaverage general intellectual functioning which originates in the developmental period and is associated with impairment in adaptive behavior' (Scheerenberger, 1987, p. 11). This definition was the first to introduce the dual criteria and levels for intelligence and adaptive behaviour (mild, moderate, severe, profound), and it was nearly universally adopted and remained virtually the same for the next 30 years. The new definitions in 1992 and especially in 2002 and 2010 marked significant changes, especially in the sense that the new definitions acknowledged the socially constructed nature of intellectual disability; it is neither a mental disorder nor a medical disorder, not an absolute trait of an individual but, rather, a state of functioning expressed in the interaction of an individual and the environment (Harris & Greenspan, 2016, p. 16; Scheerenberger, 1987, pp. 11–17).

Thus, according to the influential definitions by the AAIDD, the World Health Organization (WHO, ICD/ICF), and the American Psychiatric Association (DSM-5), intellectual disability is characterised by significant limitations in both intellectual functioning (learning, reasoning, problem solving etc.) and adaptive behaviour, which is a collection of conceptual (language, money, time etc.), social (interpersonal skills, the ability to follow rules etc.) and practical skills (personal care, schedules and routines etc.). As for profound intellectual disability, the WHO defines it in the following way:

The IQ [of those] in this category is estimated to be under 20, which means in practice that affected individuals are severely limited in their ability to understand or comply with requests or instructions. Most such individuals are immobile or severely restricted in mobility, incontinent, and capable at most of only very rudimentary forms of non-verbal communication. They possess little or no ability to care for their own basic needs, and require constant help and supervision. (WHO, 1992, p. 230)

According to DSM-5, individuals with profound intellectual disability may understand only some simple instructions due to their limited conceptual skills, can express themselves only through non-verbal, non-symbolic communication, and are dependent on others for all aspects of daily physical care, health, and safety (American Psychiatric Association, 2013, p. 36). Since profound intellectual disability typically includes other impairments (most typically visual and physical, the latter causing immobility or severely restricted mobility), or other health conditions like epilepsy or impaired sense of touch, temperature and pain, the term applied to them is usually profound intellectual and multiple disabilities (PIMD) (Pawlyn & Carnaby, 2009, p. 7).

It is difficult to estimate the exact number of individuals who meet the diagnostic criteria of PIMD simply because of the ambiguity of such criteria. However, it is generally estimated that the prevalence of intellectual disability varies between 1% and 3% globally, and that severe and profound disability affects approximately 4% and 2% of that population, respectively (Maulik, Mascarenhas, Mathers, Dua, & Saxena, 2011). In Finland, the average prevalence of intellectual disability among the population of 16–64 years of age is estimated to be 0.81% (Westerinen, 2018).

## **Development of the Finnish intellectual disability services**

State care for people with intellectual disability in Finland began at the turn of the 20th century. At the time, conceptions and terms signifying intellectual disability varied greatly in different contexts. In medicine, intellectual disability was seen as a subtype of mental illness that typically emerged during childhood. In everyday usage, the division between 'congenital idiots' ('*synnynnäinen idiootti*'/'*tylsämielinen*') and 'mentally ill' ('*mielisairas*'/'*mielenvikainen*') was not common, and such terms were often used interchangeably. In special education, intellectual disability began to be seen in the late 1800s as a developmental backwardness instead of a mental illness, which meant that it was something that could be worked upon through education. This new approach took place when students with intellectual disability were placed at schools for deaf children. Teachers soon noticed the difference between learning difficulties caused by a lack of hearing and those caused by limited intellectual capacities. Students with intellectual disability were seen as burdens in deaf schools, and therefore special classes and institutions specifically for such students were established, at first usually in connection to deaf schools (Harjula, 1996, pp. 61–62).

When the first statistics were compiled on mental illness and idiocy, in 1883, the latter was defined as a defect of the brain that could damage one's intellectual capacities, emotional and moral characteristics, or all of them. Local parishes were in charge of collecting data for the early disability statistics. Criteria and terminology in their lists were vague, confused and inconsistent with the definitions used by policymakers. Terms like '*halfidiot*' (half idiot), '*helidiot*' (total idiot), '*stollig*' (kooky, crazy), '*slö*' (dull), '*pehmeäpäinen*' (soft headed), '*puupää*' (blockhead) or '*pöljä*' (thickheaded)3 were used by teachers, priests and the common people interchangeably. As a result, there were no reliable statistics on the number of people who could have been classified as idiots, or that could provide information about the level of their capacities. The main motivation for developing a clear definition and classification system for idiocy was to establish criteria for the developmental potential of intellectually disabled children, and especially whether they were educable ('*koulutuskelpoinen*'/'*bildbar*'). Educability became the main criterion for distinguishing feeble-minded from idiots:4 the feeble-minded ('*tylsämielinen*'/'*andesvag*') were those with limited intellectual capacities, but who had the potential to develop and learn – they were thus educable and should be placed in special education classes or schools. Idiots, on the other hand, were vegetative 'creatures at the lowest level' with a complete lack of intelligence or mental qualities such as emotions, will or comprehension. They were uneducable and belonged to institutions. These classifications and descriptions were presented in late 1890s by Edvin Hedman (1863–1915), the leading figure of the early Finnish care and education system for people with intellectual disability, and they

<sup>3</sup> Some of the original terms were Finnish, some Swedish, due to the fact that both were (and still are) official languages in Finland.

<sup>4</sup> We use original terms such as 'feeble-minded' and 'idiot' in this subchapter without quotation marks, according to the conventions at the time.

guided the Finnish care system for the next 20–30 years (Harjula, 1996, pp. 62–64).

The first institutions for people with intellectual disability, like most societal responses to disability in late 1800s, were built upon traditional Christian philanthropic principles; charity was extended to feeble-minded individuals, who were seen as persons that needed to be protected from society, from its neglect and abuse. The largest and the leading institution in Finland was the Perttulan Tylsämielisten Kasvatuslaitos (Perttula Institution and Training School for the Feeble-Minded), where Christian philanthropy was very soon replaced by eugenics. It was no longer the feeble-minded who needed protection from society but the other way round. Society needed to be protected from the threat the feeble-minded posed as they were heritably degenerated individuals who could pass on their deficiencies to the next generations (Mattila, 1999a, p. 51). Societal interests became the basis for disability services and the criterion for the value of an individual human being.5 The founder of the Perttula Institution, Edvin Hedman, was a devout eugenicist who in 1887 had already described feeble-mindedness as a degeneration and a decline of human nature (Harjula, 1996, p. 131). It was Hedman who set the foundation for the institutional responses to intellectual disability in Finland, and his work (including his values) was continued by his wife, Emma, as the director of Perttula 1915–1927, and later his son Reidar, who was the director of Perttula from 1927 until 1944 (Mattila, 1999b, pp. 226–229). Accordingly, in 1912 the Perttula Institution started to sterilise their residents *alegally*<sup>6</sup> until 1922, when the Finnish National Board of Health pointed out that such operations could be seen as *illegal* (similar alegal practices were prevalent at the

<sup>5</sup> Edvin Hedman's son Reidar argued in 1927 that classifying people either as normal, useful or abnormal, or as entitled (or not) to full human rights was not only justified but necessary. The nation's success were to be placed first. Should an individual fail to meet its requirements, he or she needed 'to be labelled as below the standard without pity' (Harjula, 1996, p. 135).

<sup>6</sup> This means that sterilizations were neither legal nor illegal as the law at the time included no provision that could have been applied directly to sterilization – it was thus a matter lying outside the sphere of law.

time in many other countries, such as Sweden) (Mattila, 1999b, pp. 66–70, 229–230).

Realism was the guiding principle in the education of feeble-minded students; education cannot overcome laws of nature so the aim of school could not be to make idiots into human beings, as Edvin Hedman put the matter. Rather, the aim, for those who actually had the potential to develop, was to teach them practical and social skills, and possibly even rudimentary literacy and mathematical skills. If the child did not learn to communicate with other people, he or she was to be removed from school.7 One of the Perttula Institution's teachers argued in 1924 that the minimum aim of their work was to make a feeble-minded individual 'tolerable to the environment by habituating him to human manners'. Controlling sexuality and teaching virtues such as chastity, decency and self-discipline were also central in the institutional order guiding the lives of the feeble-minded (Harjula, 1996, pp. 78–82, 87).

Discussions about the moral worth of certain human lives and whether some humans were suitable for death were part of the eugenic discourse (Harjula, 1996, pp. 131–132). Such discussions continued even after World War II. Erkki Saari8 (1957, pp. 25–28, 50–51) in his book *Sielullisesti poikkeavat lapset* (*Mentally Deficient Children*)9 (which was used in teacher education in Finnish universities) pondered whether the lives of idiots – those who are unable to learn to read or even speak, to dress themselves, or in general to take care of themselves – were useless. He concluded that individuals who are nothing but a burden to society actually suffer from sickness, and therefore ought to be treated and taken care of rather than be exterminated. It would be absurd to kill those with smallpox, alcoholism or syphilis

<sup>7</sup> At the Perttula Institution, during 1890–1927 some 33–37% of the students were expelled because they were considered to be incapable of development (Harjula, 1996, p. 98).

<sup>8</sup> Erkki Saari was head of a reformatory (Järvilinnan vastaanottokoti) in 1945–1970 and an influential scholar in child welfare issues.

<sup>9</sup> The first edition of the book was published in 1949. The third edition, from 1957, includes a statement on the second cover page: 'Kouluhallituksen hyväksymä opettajainvalmistuslaitosten oppikirjaksi' ('Approved by the National School Board as a textbook for teacher training institutions').

and so it would be to do so in the case of idiots. Saari argued that killing such individuals would fail to eliminate the cause of deficiency – general 'social hygienic measures', such as sterilisation, were needed instead (Saari, 1957, p. 51).

Until the 1950s there were only few institutions for people with intellectual disability and no legislation to guide their services.10 The need for such legislation arose as part of a preventive welfare agenda where feeble-minded people were seen as a societal risk; the main motivation for the organised care of the feeble-minded was to protect society from social problems caused by this group of people. In particular, the care of uneducable idiots was seen to be a pressing issue by medical and education professionals as it was estimated in the 1940s that the need for institutional places for idiots was three times more than the actual number of places at the time. Therefore, Vajaakykyisten lasten huoltokomitea (the Committee for the Welfare of Handicapped Children) was set up to make a general plan for the care of disabled children and especially children with intellectual disability. The committee concluded that the only way to solve the issue of feeble-mindedness efficiently was to develop their institutional care, which in practice meant enlarging the existing institutions and building new ones11 (Leppälä, 2014, pp. 44–52).

The institutional care of the feeble-minded was arranged according to the 'Danish model', which meant organising large central institutions that had separate wards for each group of the feeble-minded according to their level of development and need of support. The Committee for the Welfare of Handicapped Children argued that this model was better than the decentralised system used, for instance, in Sweden, with small, regional institutions. The decentralised model was seen problematic because small institutions could not guarantee appropriate

<sup>10</sup> In 1927 there were 152 places in Finnish intellectual disability institutions, in 1933 228 and in 1945 735 places. In addition, some people with intellectual disability were placed in mental hospitals but there is no

knowledge about the number of such individuals (Vesala, 2003). 11 In 1947–1958 the number of the feeble-minded placed in institutions increased from 735 to 1,620. At the beginning of the 1960s, Finland had 12 institutions for the feeble-minded, with 2,018 residents (Leppälä, 2014, pp. 52, 95).

grouping of residents according to their characteristics (especially according to their additional special features such as epilepsy, physical or sensory impairments) and because it would allegedly include the risk of great disparity between different regions, where some institutions would be overcrowded while others would be half empty. Also, large institutions with several hundred residents were seen as more cost-effective and efficient than smaller units regarding care work (Leppälä, 2014, pp. 95–96).

The only places for people with intellectual disability to live outside their childhood homes in the 1960s were intellectual disability institutions (in 1969 ca. 4,300 residents with ID), mental hospitals (in 1969 ca. 1,960 residents with ID) and old people's homes (in 1969 ca. 2,500 residents with ID). But alongside the building of new residential institutions, a new form of organised care started to develop: community care. Instead of providing all care and services within institutions, the needed support and services were to be arranged within one's community, and one's home. The first day activity centres ('*päivähuoltola*' or '*eksternaatti*'), which took care of people with intellectual disability during the daytime, were established in the late 1950s. Their main function was to ease the burden of the families taking care of their disabled children and to enable them to continue to live at home. Day centres provided activities and teaching of practical skills (e.g. hygiene, table manners), and for the more advanced students even schools subjects, mostly for children under the age of 16. In 1961 there were only nine day centres, with 476 customers, and, by 1969, 1,189 customers (Leppälä, 2014, pp. 110–112; Vesala, 2003).

Parents of children with intellectual disability, who started to get organised in the late 1950s, were one of the driving forces of the development of community care. Many parents did not wish to place their children in institutions,12 which caused bafflement among experts (e.g. medical doctors, child welfare and public health officials), who were virtually unanimous that institutions

<sup>12</sup> One finding of doctoral research published in 1966, which the candidate found surprising, was that only some 25% of parents wanted to place their children with intellectual disability into institutions (Leppälä, 2014, p. 115).

were the best solution not only for the disabled children but for their families as well. The relationships between parents and experts were often strained as experts tended to see parents as impediments to the implementation of appropriate care for their children. Many parents were seen to be unfit to care for their children and experts accused them of denying the reality of their child's disability in cases where parents attempted to keep their children in regular schools. However, institutions did not have sufficient places for all persons with intellectual disability, so the development of community care was a practical necessity (Leppälä, 2014, pp. 112–117).

The general ethos guiding disability policy in Finland started to change in the 1960s, when society's interests were replaced by the interests and social rights of individuals. For the first time, (re)habilitation was seen (especially by academics and professionals in social policy and intellectual disability care) as profitable and possible for people with intellectual disability, something they might actually benefit from – even in the case of those with the most profound disability. It was emphasised that, regardless of possible utilitarian considerations, all individuals had the right to pursue and realise their potential, and live lives that were as meaningful as possible. Also, persons with intellectual disability not only needed their basic care needs to be met but impulses and activities to fulfil their emotional and social needs as well. Admittedly, habilitation would never make these individuals productive citizens who could support themselves. But, even though the development gained through habilitation may have seemed modest to other people, they were pivotal to the individuals with intellectual disability themselves, and to their quality of life. It was not utility but, rather, humanity that should motivate habilitation; society was seen to have a duty to secure the dignity and human rights of people with (profound) intellectual disability. The focus of habilitation (instead of *re*habilitation, because it was about developing each person's individual potential rather than restoring lost capacities) was on primary adaptive functions (hygiene, dressing, eating, communication etc.) and strengthening each person's potential capacities in order to attain as high a level of proficiency as possible (Leppälä, 2014, pp. 125–129).

The sexuality of persons with intellectual disability was virtually unthinkable until the 1960s.  One function of institutions had been from early on to control the sexuality of their residents. One example of this policy in Finland was to place residents into rooms of either one or three, in order to prevent homosexual relationships.  An individual's sexuality belonged now to herself; it was not primarily something that society ought to control.  The new Marriage Act (1969) and Sterilization Act (1970) no longer categorically denied people with intellectual disability the chance to get married or to have children. However, in practice the new laws and more liberal attitudes regarding sexuality within the disability service system did not make a dramatic difference in the lives of people with intellectual disability. Their sexual relationships, marriages and procreation continued to be seen as problematic even by the professionals in charge of their care: people with intellectual disability were not seen to have the necessary understanding about the emotional and moral issues related to sexuality and marriage, let alone parenting (Leppälä, 2014, pp. 136–141).

One further indication of changed attitudes was a discussion about the need to renew Finnish terminology. The term '*vajaamielinen*' (feeble-minded) was increasingly seen as derogatory, especially among parents of feeble-minded children. Vajaamielisten Tukiyhdistysten Liitto (the main parental advocacy association in the 1960s for persons with intellectual disability) argued that the term '*vajaamielisyys*' (feeble-mindedness) should be replaced with the concept of '*kehitysvammaisuus*' (developmental disability). However, '*vajaamielisyys*' should not be abandoned altogether, because of its preciseness – even though the term had become infected with negative connotations, at least everyone knew to what kinds of people it referred to. The main Finnish organisation promoting the cause of the feeble-minded, Vajaamielishuollon Keskusliitto changed its name to Kehitysvammaliitto (the Finnish Association on Intellectual and Developmental Disabilities) in 1965 and recommended that same terminological change would be introduced in legal and academic use. It was even suggested that the term developmental disability (*kehitysvammaisuus*)13 could be applied to all impairment groups. These suggestions received mixed responses. For example, Lääkäriliitto (the Finnish Medical Association) and Invalidiliitto (the Finnish Association of People with Physical Disabilities) pointed out the risk of conflating those with 'intellectual developmental disabilities' to those with physical disabilities and argued that such a confusion would be counterproductive for both groups. Despite various unfavourable criticism, the term '*kehitysvammaisuus*' gradually became established in the 1970s and referred specifically to people previously called '*vajaamielinen*' (feeble-minded) (Leppälä, 2014, pp. 121–125).

New mentality in terms of disability rights did not, however, challenge the status quo regarding institutionalisation. It was still generally agreed that the only suitable environment for people with profound intellectual disability was the institution. The number of residents in institutions kept increasing in the 1970s and the last large institutions were built at the end of the decade. In 1979, the number of people placed in intellectual disability institutions had risen (5,612 residents), whereas the number of residents with intellectual disability in mental hospitals and old people's homes had decreased (1,416 and 1,656, respectively). Simultaneously, the number of clients in day activity centres had increased steadily (at the end of 1970s, over 4,400). Although the first critiques of intellectual disability institutions, and their predominant status in the care system, started to appear in the late 1960s, the legitimacy of institutions as such remained unquestioned. Besides, at the time there were very few non-institutional residential homes for people with intellectual disability. One reality that maintained the dominance of institutions was the legal requirement that one should be

<sup>13</sup> Interestingly, a similar terminological change took place in the United States some 40 years later, when the term 'mental retardation' was replaced by 'intellectual and developmental disabilities', which is very similar to the Finnish term '*älyllinen kehitysvammaisuus*' (intellectual developmental disability).

placed in an institution before the age of 16. Many parents ended up placing their children in institutions just to secure their future, when the parents themselves would be too old to look after them (Vesala, 2003).

Increasingly, institutional care received criticism on the grounds of the new intellectual disability policy that emphasised individuals rights and needs. A situation where individuals had no genuine opportunities for living arrangements outside institutions was seen to be discriminatory (Vesala, 2003). This mentality was the result of the new guiding principle of disability policy in the Nordic countries, namely normalization. It was increasingly argued in the 1970s and 1980s that disability services should be provided as part of mainstream social services and that, accordingly, institutions and segregated teaching arrangements for persons with intellectual disability should be abolished (Leppälä, 2014, pp. 290–293; Tøssebro, Bonfils, Teittinen, Tideman, Traustadóttir & Vesala 2012). Such criticism resulted in heated debates in the intellectual disability field. It was argued that the normalisation principle, with an emphasis on integration, had ignored the views of families, and was, all in all, utopian. Why bring down brandnew, expensive institutions with qualified professionals who had long experience of working with people with intellectual disability? Many professionals in the institutions were offended by the normalisation and deinstitutionalisation critique, which was labelled as idealistic and biased. Nevertheless, the first group homes were established in the 1970s and the unquestioned dominance of institutions started to break in practice. At that time, the issue of adults with intellectual disability living with their ageing parents also received increasing attention. At the turn of the 1980s, approximately 60–70% of people with intellectual disability (ca. 5,000 individuals) still lived at their childhood homes (Leppälä, 2014, pp. 196–214; Vesala, 2003).

It was not until the 1990s that the number of people with intellectual disability living in institutions started to decrease rapidly as they were moved to group homes. Group homes have been a crucial part of the process of deinstitutionalisation, but they have also been seen to include characteristics similar to traditional institutions: in Finland, group homes are typically large units (several group homes in the same building unit) with dozens of residents, and they have not brought a change to the passive status of people with intellectual disability as service users ('*palvelunkäyttäjä*', a term widely used nowadays) or the relationship and the power imbalance between the residents and the staff. So, in practice, the move to community care has partly been just a matter of reclassifying existing institutions as group homes. In a somewhat similar way, in Denmark the concept of the institution was removed from regulations and statistics in 1998, which, on paper, made them disappear and the country had all at once completed the process of deinstitutionalisation. The move from institutionalisation in Finland has been slow compared to, for example, Sweden and Norway, and it is still an ongoing process. Norway closed all its intellectual disability institutions in the mid-1990s, Sweden by 2002 (Mietola, Teittinen & Vesala, 2013, pp. 10–11; Socialstyrelsen, 2018b; Tøssebro et al., 2012).

In Finland, the intellectual disability service system is not as regulated as it is, for example, in Sweden. Persons with PIMD in Sweden live in their own apartments with full-time personal assistance, in group homes, or with their parents (Socialstyrelsen 2018a, 2018b, p. 14). In Finland, most persons with PIMD live in group homes. These differ from their Swedish counterparts in size (group homes in Finland have usually five to eight residents but there can be several group homes in the same building) and their location (either in suburbs or outside residential areas). Many group homes in Finland are architecturally very institutional. They look and feel – both inside and outside – like small-scale hospitals rather than someone's home (see Chapter 7). This contrasts with Sweden, where (at least on paper) the design and building of apartments in group homes is controlled by the same regulations that apply to housing in general, and by the residents themselves. The aim of these regulations is to provide the residents with conditions through which they can actively take part in community life (Mietola et al., 2013, pp. 20–21). However, reports by the Swedish National Board of Health and Welfare (Socialstyrelsen, 2011, 2018, pp. 29–31) have concluded that reality does not always correspond with regulations. The size of group homes in Sweden is sometimes much larger than the recommended three to five apartments, and in some cases group homes have been placed in the same locations as service homes for the elderly, which inevitably creates an institutional feel.

This tendency seems to apply to all Nordic countries. As Tøssebro et al. (2012) conclude in their review of Nordic intellectual disability services, 'the ideology of community care and small group homes prevail in the Nordic region but, in reality, the implementation shows conflicting trends' (p. 139). In Finland, the government launched a national programme in 2010 with the aim of closing all intellectual disability institutions by 2020. However, at the end of 2019, there were still 452 persons with intellectual disability living in institutions, 131 of whom were under 18 (https://sotkanet.fi/sotkanet/fi/taulukko/).

#### **Outline of the book**

In the upcoming chapters, we will present our data and main findings and analyse some key theoretical issues that persons with PIMD have made us confront.

In Chapter 2, we explain how our research was carried out: the recruitment process of our research participants and the various practical problems related to it. Our research engages with the everyday lives of people who could not, themselves, give us the permission to observe and take part in their lives. Therefore, we need to clarify some ethical issues related to data collection as well as knowledge production with this group of people. The chapter also explains the complexities during the fieldwork regarding interpretation, field notes and research relationships: what did we see, how should we describe it, and in what ways should we engage with the everyday lives of our research participants?

In the beginning of our fieldwork, Reetta and Sonja mostly concentrated on making sense of our research participants: how would we know what particular sounds or expressions meant in particular contexts? How do we know what they know, or what they can? We soon realised that these kinds of questions perplexed the care workers as well, and played an important role in their professional practice. Chapter 3 presents the ways care workers describe the personalities and competencies of our research participants, and persons with PIMD in general. The chapter unpacks the conflict between the formal medical knowledge concerning persons with PIMD, and the knowledge that the care workers formed about our research participants. How did these conceptions affect the care work practices?

One individual asset that some of our research participants had, according to the care workers, is sociability; they enjoyed socialising and, in general, the company of other people. We discovered (in Chapter 4), however, that, while our research participants are constantly surrounded by other people (in that they live in group homes and participate in day activity centres), they have little genuine opportunities for social interaction. This is partly due to the care culture and scarce resources in many group homes, where the emphasis is one-sidedly on basic care tasks like dressing, feeding and toileting. But it is disability policy that ultimately directs the organisation of care work and what is prioritised in group homes. The policy is concerned about enhancing the social lives and inclusion of persons with PIMD outside the group homes and day centres – outside the disability service system. But the problem is that our research participants' lives take place almost exclusively within the disability service system, of which the policy texts say next to nothing as regards sociability.

Sociability is typically seen important to youth and young adults, who are expected to build various, possibly lifelong relationships. This raises the question of age, and its role in the lives of persons with PIMD. In Chapter 5, we focus on the life of Hugo, a young man in his early twenties, and how his care workers, teachers and mother think of what kind of life is appropriate for young people like Hugo.14 We examine the reasons why Hugo has no possibility to lead such a life. The key issue in this context is the meaning of the principle of age-appropriateness: why do we think that people at a certain age should act in certain ways, and to what extent do these cultural conventions apply to persons with PIMD?

An obvious, and difficult issue related to age-appropriateness is sexuality. Chapter 6 asks15 whether persons with PIMD have the right to sexual pleasure and whether their carers have the duty to facilitate their possibilities to flourish as sexual subjects.

<sup>14</sup> Chapter 5 is a revised version of Mietola and Vehmas (2019).

<sup>15</sup> This chapter is a revised version of Vehmas (2019).

And, if sexuality is seen as a right, should it be seen on a par, for example, with other dimensions of care, similar to nutrition or health care? What are the risks involved in facilitating sexual pleasure and would it be better to do nothing in order to nothing wrong? Sexuality is an important issue regarding well-being and a good life, but it is also symbolically significant because the way we grant (or not) sexual rights for certain people reveals how we perceive these individuals as human beings.

People with intellectual disability have a long history of being seen as animal-like and, therefore, they have been seen unfit to enjoy, for example, sexuality. In current philosophical ethics, it is not uncommon to see persons with intellectual disability as psychologically comparable to non-human animals. Such comparison is often seen to suggest a lower moral worth of persons with PIMD than the rest of us. But animality is no longer merely a negative signifier. It is increasingly seen in humanities and social sciences as something positive that does not necessarily deprive one of full moral status. Chapter 7 explores the potential benefits and risks related to the conceptualisation of persons with PIMD in terms of animality. What are the ethics of comparing human and non-human animals and their individual characteristics with one another? Is such an engagement epistemically helpful and ethically justified?

In Chapter 8, we summarise our main findings and theoretical reflections. The appendix returns to the philosophical starting points with which we began: the basics of moral status and moral worth of persons with PIMD. It explains and analyses the main theories and arguments used in philosophical debates on moral status. We use those debates to develop our own view that persons with PIMD share a moral status equal to other human beings and higher than non-human animals. We argue that the standard philosophical account that evaluates the moral worth of individual beings in terms of their cognitive capacities is flawed. In fact, we argue that no fully satisfactory account exists that would manage to take into account all relevant factors and provide theoretical considerations that would help to solve the issue.

# **Chapter 2: Ethnography: Recruitment, Interpretation and Ethics**

It is an early spring afternoon and Hugo has just returned from school. As usual, he is received by a care worker, who suggests to Hugo that he should have a short rest in his bed before dinner. The care worker starts to open the straps on Hugo's wheelchair, while explaining to Hugo what she is doing: 'You have all this stuff here; let's open them a bit' ('*sulla on paljon näitä rensseleitä, otetaan näitä auki*'). She takes off one of the armrests on the chair and prepares to lift Hugo out of the wheelchair, telling Hugo – who is stretching himself – to remain in a sitting position so that she can lift him out of the chair and onto the bed. Reetta is aside observing what is happening, paying attention to the bodily movements of the care worker and Hugo, to the details of the care worker's talk and gestures, and to Hugo's responses.

After the care worker has tucked Hugo in and left the room, Reetta remains sitting on the sofa placed in front of the window, behind Hugo's bed head, writing down in her notebook notes about what just happened. For example, she writes down an exchange that took place between Hugo and the care worker:

'Do you want to listen to music?', care worker asks, leaning again closer to Hugo, 'No. Will I put an audio book on?'. Care worker waits. 'You're not sure.' Hugo has his chin up, raises it a bit, to the right, care worker asks whether Hugo wants to listen to the children's voices [from outside]. That she can leave the window open so that Hugo can listen to the voices, 'We don't need to turn [stereo] on. I'm not sure whether it is because of you [wanting]

#### **How to cite this book chapter:**

Vehmas, S. and Mietola, R. 2021. *Narrowed Lives: Meaning, Moral Value, and Profound Intellectual Disability*. Pp. 29–55. Stockholm: Stockholm University Press. DOI: https://doi.org/10.16993/bbl.b. License: CC-BY 4.0.

or it is more our staff members' habit that it is always turned on.' The care worker walks away from Hugo's bed, explains to me that she is unable to interpret Hugo in a way that she would definitely know what he means.

While Reetta is still writing notes of the previous moments, she realises that Hugo is 'talking' to himself, and thus writes in her notes: 'Hugo starts to make sounds, "Ee-eee-uuu. Hrr [grunts]".' After listening to Hugo for a while, Reetta asks him 'What are you talking about there?' and when Hugo continues to 'talk' Reetta gets up from the sofa and walks over to bedside to say hello. Hugo has raised his hands up in front of him, laughs aloud by himself, and startles a little when Reetta starts talking to him. He turns his head towards Reetta, smiling. Reetta talks to Hugo for a while, then returns back to the sofa, telling him that she will now go and sit down to write.

This is what ethnography is by and large about: being present, participating in people's everyday lives, and recording one's observations. In our case, the notes consist of descriptions of action (movements, facial expressions, gestures) and discussions. Since the researcher participates in the observed situations, field notes often include descriptions of the researcher's actions and reflections of her first-hand experiences of activities and relationships in the field. The notes thus provide multilayered descriptions that comprise of different perspectives and 'voices' in situations in which the researcher takes part. Knowledge production like this may seem rather straightforward. In reality, however, it is (or at least *should* be) a result of careful thought process and multiple decisions concerning research practice and focus.

Just getting to the point where Reetta could sit on Hugo's sofa writing notes (which she also did when sitting with staff) had required thinking around research ethics, multiple negotiations with different parties, and the development of ethically sound research practice that is in line with organisational practices and Hugo's preferences. Reetta's actions in the situation are on the one hand based on conscious decisions made within the research team, for example on how the researcher should enter and be present in research participants' private spaces, or what kind of relationship it would be appropriate to develop during the fieldwork. On the other hand, these practices are based on Reetta's interpretation of Hugo's personality and personal preferences, and how they should be taken into account. Reetta had become to know Hugo as a person who enjoys socialising and the company of others. Being present in Hugo's room, where he spent most of his time at home, seemed ethically justified inasmuch as Reetta was attentive to Hugo's responses to her presence.

What Reetta wrote down in her notes was a result of the gradual development of focus and practice. Our research question – *what makes a good life for people with PIMD?* – does not generally provide a clear focus for observation. In order to be able to address such a large question, we had to ask first very basic questions about the lives of people with PIMD such as what happens in their lives, where it happens and why. Gradually we were able to sharpen our focus to things we became to consider significant in relation to 'living a good life'. For example, in the episode described above Reetta's attention was drawn to the efforts of the care worker to find out Hugo's preferences concerning pastimes, and how she immediately questioned her skill in interpreting Hugo accurately. This episode reminded Reetta about her previous observations on the ambivalence of interpretation with people like Hugo: how and what we know about their own perspective, and how we engage with them were constant sources of worry to the care workers, and played a crucial role in the ways the care work was carried out (see Chapter 3).

The practice of note writing is not just about what gets written down but also about how the researcher arrives at her observations. In order to record the ways Hugo responded to talk, being moved from his chair to his bed, or even just to sounds of the children in the playground, Reetta had to learn how to interpret him. The whole practice of note taking thus turned into a process of learning how to notice and capture movements, sounds, gestures and facial expressions that make up Hugo's 'talk' his 'voice'. This intertwined process of learning to interpret through writing led Reetta and Sonja not only to acquire new skills, such as writing observations in adequate detail, but also to profoundly rethink about how we observe, how we interpret, and ultimately how and what are we able to know.

This chapter is about our research practices and the ways they developed during the project. While our primary focus is on practical questions of what and how we actually did, the following discussion also aims to elucidate our thinking behind the acquired practices. Our account has been informed by previous qualitative studies, in particular ethnographies that have had people with intellectual disability as key participants (e.g. Davis et al., 2008; Komulainen, 2007; Simmons & Watson, 2014). This chapter does not have a specific section on research ethics, since ethics is a theme that runs through our discussion. The mere choice to do ethnography was based on the ethical commitment to see the lives of persons with PIMD as valuable and worthy of being understood. In our view, ethics is a crucial part of ethnographic understanding. To Paul Atkinson (2015), this ethical orientation manifests in ethnography's devotion to represent lives of research participants in their 'full complexity, with due regard for the rationality of social action, and with respect for the social actors involved' (p. 173). Don Kulick (2015) writes that, for him, being an anthropologist is about working in a way that 'extend[s] across boundaries, to listen to people whose language and culture one struggles to comprehend, and to represent others in a respectful and empathetic way' (p. 17). The views of Atkinson and Kulick resonate with our project's key ethical commitments and with the concerns that we faced when planning the execution of the project. Our starting point was to position people with PIMD as moral subjects, which implied that our research practice had to be designed in a way that acknowledged and supported our research participants' dignity. Ethnography provided the means to carry out our research accordingly.

For us, crucial aspects of ethnographic knowledge production are development and learning; one does not have to know the people and culture in question when entering the field. Rather, one learns about them throughout the research process. As we have learnt to know about our research participants, we also have learnt something about how to interact with them in ways that respect their personalities. We have learnt what is relevant in order to understand their lives and, to some extent, even to learn to understand them as persons.

Ethnography's roots are in anthropology, which has traditionally studied culture, especially non-Western cultures. Owing to criticism raised, for example, by post-colonialist perspectives, anthropology as a discipline has had to engage with discussions around politics and ethics of studying 'Others'. According to Kulick (2015), it is the premise and promise of anthropology 'that one not only can, but one *should* represent people who are very unlike oneself' (p. 31). In other words, studying a group that you do not belong to is not only a question about the right, but sometimes also an obligation to 'speak for' them.

Our research participants have very limited means to express their 'voice'. It therefore has been unquestionable to us that as researchers we have an obligation to try to make sense of and represent these 'voices' – however ambiguous these voices are; however insufficient our tools for 'capturing' them might prove to be. Part of this engagement is a conscious risk involved when one aims to 'speak for others' – the epistemic risk (and related ethical and political risk) of misrepresenting their lives and them as human beings. We have tried to see these challenges as something productive, as questions that push us to develop our thinking and methodological practices. Besides, if the 'don't speak for others' argument were taken to its logical conclusion, then persons with PIMD would never get represented by anyone.

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

The project was launched in September 2014. We instantly started to prepare documents for ethical review for the University of Helsinki Ethical Review Board, and, at the same time, made first contacts with service provider organisations (management level), to find out about their requirements for research permits and ethical review. We contacted municipal social welfare agencies and private sector service provider organisations in the Helsinki capital region. We had collaborated with some of the organisations previously, while others we acquired through municipal agencies. We inquired whether the organisations would be interested in participating in our study, and whether their service users would fit our research interest.

All relevant 'stakeholders', from managers of provider organisations to family members, were happy to take part in our research. In fact, they repeatedly emphasised in different stages of the project how important in their view research on the lives of persons with PIMD is. Two key factors probably explain this enthusiasm: the disability politics in Finland at the time, and the various expectations these stakeholders had for our project.

Our project started in a situation where intellectual disability services were finally made to bring the deinstitionalisation process to a conclusion; governmental programmes allocated money for new housing solutions (i.e. group homes to replace institutions) and forced municipalities to implement a transfer from institutional care to community care (Mietola et al., 2013). This situation most likely had an effect on our negotiations with different parties. The managers of service provider organisations thought that participating in our study would give them knowledge of whether their services reached the policy aims, especially in relation to people with complex needs. One middle manager-level actor even asked to get information from our observations to be used in their organisation's internal evaluation. One service provider unit actually took our research question (what is a good life and how it materialises) and has been using it to analyse the experiences of their service users (i.e. interviewing their group home residents).

As for family members, their interests seemed to be both personal and political. They wanted information about their family member's living conditions, but also to express their concern over the quality of the services and everyday care (e.g. the effects of the high turnover of staff). They emphasised, however, how things had improved and that they were, in general, satisfied with the current situation. Some of the care workers, on their part, hoped that our study would give visibility to the important work they do in the changing context of intellectual disability services. They repeatedly talked about the lack of knowledge regarding this specific group of people, even among the staff who work with them. Alongside visibility, they hoped for appreciation for their work, which in their view still suffers from a stigma of being a substandard form of institutional care.

During the initial discussions with different service provider organisations, the ambiguity of the term 'profound intellectual and multiple disabilities' became evident. One key challenge related to providing a clear definition of who we wanted to recruit was that we were ourselves uncertain about the matter. While all of us had worked with people with intellectual disability, our contacts had almost exclusively been with people with milder intellectual disability. This is hardly surprising since individuals with severe or profound intellectual disability still live their lives tightly within the disability service system and thus largely hidden from our everyday surroundings.

After initial discussions with one service provider organisation, our research team sat down to rethink how to proceed with these negotiations. The manager of that organisation was enthusiastic about our study and wanted us to start working with service users, who in their organisation were seen as puzzling and challenging. However, the individuals the manager had in mind were persons with milder intellectual disability. It was apparent that we needed to be clearer about the key criteria for our research participants, and find a way to communicate the criteria in a more intelligible way to the professionals. In order to gain access and build trust with the service provider organisations and staff members, we needed to hear their concerns in relation to which individuals were marginalised in and by the service system, and find ways of taking these views into consideration in the recruitment process.

Around the time of these initial discussions with the service providers, we also visited the Communication and Technology Centre Tikoteekki at the Finnish Association on Intellectual and Developmental Disabilities. With two experts in the field of intensive interaction, Kaisa Martikainen and Kaisa Laine, we discussed expedient terminology. They argued that the term 'profound intellectual disability' is not an established term in Finland. Accordingly, they recommended that we use the term 'persons with most severe intellectual disability' ('*vaikeimmin kehitysvammaiset*') in our recruitment process, and also specify that we are interested in people who do not have spoken language and are capable of only very rudimentary forms of non-verbal communication. We followed their advice as it seemed to reflect the more metaphorical definition and a criterion that we had in mind; we were looking for people who remain mysteries to people close to them in much more profound ways than usually is the case with people close to us. This conceptualisation arose from our previous discussions with some parents who described their children in those terms (some care workers in our data also referred to our research participants as 'mysteries'). They had learnt to understand their children and their communication but were still puzzled on a regular basis regarding what their children wanted to communicate.

All of the management-level negotiations were very positive; the managers immediately recognised the importance of the project; some even cheered that finally someone was interested in people with PIMD. They were eager to have us doing fieldwork in their organisations. Managers gave us contact persons (heads of day and housing services) who could help us to identify possible research contexts/units and participants. Our research participants had different kinds of service combinations: living in public or private services and going to a public day centre, or living in private services and also going to private day centre. Services for people with intellectual disability are often produced in public–private partnerships, which means that ethnography in these services requires multiple review processes and negotiations in different contexts.

An important part of this process was discussions with specific units and group homes where we asked them to identify potential research participants for us. Often these early contacts meant that we got to meet service users, including our intended research participants. After finding an agreement with the care workers on suitable individuals for our research, we sent letters to their next of kin via the units, informing the family members about the project and more specifically what participation in the project would mean. All contacts were positive, and, after more detailed discussions with family members or close care workers, proxy consent was given on behalf of our participants (each of our research participants had a guardian or family member who was legally empowered to make decisions for them).

While these discussions proceeded smoothly, in some cases it was somewhat difficult to judge who should give consent on behalf of the research participant. While in most cases our participant's parent was also his or her legal guardian, we also had participants whose family ties were very fragmented (older participants who had been institutionalised since early childhood), and who had been appointed a public legal guardian (who only monitored their financial matters and typically did not know them personally). In the case of Ella, for example, the initial negotiations to include her as a participant involved an extra round of discussions about proxy consent and who should give it on her behalf. After talking with her group home's care workers, her brother and her legal guardian, it became obvious that neither a family member nor her legal guardian would know her and her life well enough to assess her will in this matter. As a result, all parties agreed that written proxy consent should be given by the housing unit care worker who coordinated her care.

The care workers in our research contexts were in a key position to finally open doors for us but were the last ones to be asked for consent. We invited ourselves to staff/team meetings in the group homes and day centres, where we introduced the project and practices of fieldwork (what our participation means in practice) and asked for the staff members' (verbal) consent. The atmosphere in these meetings differed: in some contexts, reception was very enthusiastic, with lots of questions about the aims of the project, whereas in other contexts the staff members seemed more cautious. Only one person among all of those we contacted declined to participate (a care worker in one of the research contexts). In this particular case, we carried out our fieldwork in the unit during times when that person was not working. When we had gained access to our fieldwork contexts, we informed other care users in these contexts and their family members (by letter) about the project and our fieldwork's possible impact on them. Also, should they refuse to take part in the research, they could do that by either informing the care workers or contacting us directly.

With one of the organisations we also negotiated the possibility of doing a short pilot observation in one of their group homes. Since we were in the middle of the process of ethical review by the University of Helsinki Review Board, and did not have research permits or agreements, it was agreed that we would visit the unit as visitors, and that the data produced would be only for our own use with the aim of defining how we would proceed with our fieldwork in this particular organisation (who would participate in the research; in which unit the fieldwork would take place). The aim of our pilot study was to get some understanding on the specific issues involved in the fieldwork with people with PIMD. The three-day pilot was carried out in November 2014.

We recruited six key participants, who were in their twenties, thirties and forties, with varied physical, cognitive and emotional characteristics: Anna was in her early 20s, Ella her late 40s, Frida her early 30s, Hugo his early 20s, Leo his early 40s, and Sebastian his early 20s. We considered writing biographies of each individual but decided not to do so because we wanted to secure our research participants' anonymity; after all, they represent a very small group of people. However, we have included information about each individual in different parts of the book to contextualise the issue under discussion.

Fieldwork took place in five group homes, two day centres and one vocational school during 2015–2016. We observed one research participant at a time, by one researcher, usually two days a week for a period of three to four months. In practice, this means that we spent more or less a hundred hours observing each participant. Our data consisted of field notes, 19 interviews with family members and care workers, and written materials such as personal treatment and activity plans. During the fieldwork, we met dozens of professionals and service users. We also had frequent contact with the family members of those research participants who had close relationships with their families. All in all, we had contact with hundreds of people in our research contexts – care users, professionals, care workers and family members. The nature of these contacts varied; some became important informants through repeated contact and mutual rapport, while others remained more or less distant.

## **Developing research practices and research relationships**

The recruitment process described above included plenty of ethical consideration and decision-making. One key question that had to be resolved early on had to do with the principle of informed consent, which, in the case of persons with very limited cognitive and communicative capacities, is highly problematic. Our research participants were most likely not able to understand the information provided (what they were supposed to consent to) or have the means to communicate their will in the matter. There are very few official guidelines for conducting research with a group of people like this. For example, the General Research Ethics Guidelines for Humanities and Social Sciences (Finnish Advisory Board on Research Integrity, 2009) did not address the issue of how to proceed with consent in cases where participants of age have significant cognitive limitations. In order to find some starting points to our thinking in relation to consent, we turned to ethical guidelines in medical research, more specifically the Medical Research Act (488/1999).

To our surprise, the medical research legislation not only addresses the issue of research with participants with significant cognitive impairments but also provides a more holistic perspective to informed consent than was the case in the social science guidelines in Finland at the time. The Act states that written consent is required from the next of kin or other representative close to the participant. Furthermore, consent should also be evaluated from the point of view of the possible stress or harm caused to the research participants.

Our approach to consent was based on a view that combines proxy consent with a strong emphasis on the constant monitoring of the research participants' well-being. Following examples of previous international studies (e.g. Cameron & Murphy, 2007; Cocks, 2006), our solution was to combine proxy consent with a continuous process of assent. This meant keeping the well-being of our research participants the major concern during the fieldwork; we were prepared to withdraw at any time should it seem that a participant was disturbed by our presence. This approach resonates well with both our general approach to ethics, which has been influenced by feminist ethics of care (e.g. Kittay, 1999) and the related ethical commitment to recognise the personhood and inalienable value of people with PIMD as fellow humans (Kittay, 2005; Nussbaum, 2006). But how could we be sure that our presence did not cause harm and stress to our research participants? How does one build research relationships based on mutual recognition and respect with persons with PIMD?

For us it is self-evident that the recognition of personhood and worth of our research participants can only be achieved through the recognition of the profound difference between them and us. Rather than treating the undeniable difference(s) related to cognitive impairments as a risk that closes opportunities to connect with people and interpret them, these differences should be 'engaged with' (Kulick, 2015). As Kulick (2015, p. 28) points out, '[t] he space between that familiar sameness and the in many ways unknowable difference is the space of ethics'. Part of our engagement with this space of ethics was a conscious awareness of our accountability, as well as of the significance of our choices and practices during the fieldwork.

In her account of 'asymmetrical reciprocity', the American philosopher Iris Marion Young (1997) argues that ideal communication starts with mutual recognition, where the other person is seen to have equal moral worth and irreducible perspective that ought to be taken into account. However, moral respect also entails recognition of the differences between communicative subjects. According to Young (1997), the relationship between participants of a communication situation is always asymmetrical as each of them is distinguished by a particular history and social position: 'when privileged people put themselves in the position of those who are less privileged, the assumptions derived from their privilege often allow them unknowingly to misrepresent the other's situation' (Young, 1997, p. 48). Acknowledging the irreversibility of the perspectives of communicating subjects is therefore an essential element of moral respect. Young, however, seems to 'assume an "other" who can talk, or who can express himself or herself clearly through some other medium, such as sign language' (Kulick, 2015, p. 25). The risks and obligations involved in 'speaking for others' are intensified when we are talking about people who have very limited means to express themselves (ibid.). Kittay (2010) challenges academics who study and write about people with significant cognitive impairments – people who cannot speak for themselves – to know those people they are writing about (epistemic responsibility) and to acknowledge what they do not know (epistemic modesty). Translating these ideas into practice has meant that our research process has involved constant critical reflection. While we have made various interpretations about our research participants, we have simultaneously had to challenge our knowledge about them: why do we think we know, and what are, the limit(ation)s of our knowledge?

As early as the initial negotiations with the care workers, we emphasised that we must rely on their experience and guidance regarding the ways our research participants should be approached and what their preferred ways of interacting with others were (see also Boxall & Ralph, 2010; Simmons & Watson, 2014). We had some general principles concerning interaction; for example, we always greeted our key participants verbally (and with touch if they preferred) when arriving at the context, and interacted with them (verbally or by touch), thus respecting their right to be included in ordinary interaction and communicative community. Instead of relying on predetermined, unchallenged diagnostic categorisations that lump together people with the same diagnosis, we aimed to develop our practices according to what we learnt about the individual preferences of our participants in the course of getting acquainted with them (see Christensen & Prout, 2002; Klotz, 2004).

I go to Ella to say hello, kneel down next to her on the floor, touch her hand and say 'Hi Ella, how are you?'. Ella turns her face towards me, takes hold of my hands and claps my hands together. Then takes my hand to her lips, and from there to her face, pressing my palm against her face. She then lifts her gaze towards me and smiles. Starts clapping with my hands again, then lets go. (Field notes, with Ella)

In order to further enhance our ability to communicate and interact sensitively with our profoundly disabled, non-verbal participants, we also consulted with experts from the Finnish Association on Intellectual and Developmental Disabilities concerning intensive interaction methods. We found these methods useful particularly with those research participants whose means and initiatives concerning interaction were most difficult to interpret. For example, with Anna, one of our first research participants, finding a momentary interactive connection required that Sonja learnt to attend and respond to Anna's subtle and unique, and often transient, interaction initiatives (such as brief eye contact or when she reached to touch Sonja's arm). Anna's and Sonja's research relationship had to be built on and through these brief moments of connection. However, some of our research participants were very skilled in communicating their preferences and they responded to people and activities around them with gestures, expressions and sounds that were easier to interpret. For example, it would have been difficult to miss or misinterpret Sebastian's excitement when anyone suggested a game of ball throwing. After few weeks, we learnt to know our research participants and were able to start building one-to-one relationships with them, thereby becoming less dependent on the care worker's interpretation assistance.

Previous studies with non-verbal persons have underlined how understanding about individual modes and preferences of communication can only be built over time, through sustained presence and participation (e.g. Pockney, 2006; Davis et al., 2008; Simmons & Watson, 2014; Björnsdóttir et al., 2015). By observing the interaction of our participants with other people in different situations, we gradually learnt to develop dialogical relations with them (cf. Klotz, 2004). Some of the participants seemed to want to keep distance to us, which we respected; hence, we stayed in the background, and participated in their activities only minimally. However, others seemed clearly to enjoy close, even physical contact, such as clapping hands, sitting on our lap, or hugging. At the same time as we tried to be sensitive to our participants' preferences, we also paid attention to how these changed situationally or over time. For example, Frida, who at first seemed very reserved, eventually had long 'chats' with Reetta and was clearly delighted when Reetta arrived to her group home. We responded to the participants' interaction initiatives whenever we could, and interacted with them in ways they preferred.

I'm sitting on a sofa in the living room and writing notes. Sebastian rolls his wheelchair towards me, stopping in front of me.  I start echoing his utterings. He then grasps my hand firmly, and takes my notebook and throws it to the floor. I rise to pick up the notebook, then return to the sofa. Putting the notebook aside, I bend slightly towards Sebastian and look at him. His head jerks slightly and he lifts his eyebrows, looking enlivened. He rolls a bit closer still in order to pat my thigh with one hand. I pat him back, and on we go, patting each other in turns a long while. In the midst of this patting game Sebastian smiles cheerily and smacks his mouth as if giving me a flying kiss. (Field notes, with Sebastian)

It was crucial for us to learn to recognise our participants' initiatives, and how they signalled different physical states (e.g. being tired or agitated). Interpreting some of our participants felt easy (like with Sebastian) since they actively made contact with other people. But the process of learning to interpret the expressions and gestures of some other research participants took months. Despite the experience we gained during the fieldwork of our participants' means of expressing themselves, our interpretations remained partial and situational. We also repeatedly confronted moments when we felt uncertainty over how to interpret our participants' action (see Boxall & Ralph, 2010). For example, interaction with Ella, who often sought physical contact with people around her, sometimes turned into action that could be seen as a form of self-harming.

I go and sit down next to Ella. Ella moves herself so that she sits right next to me, takes hold of my hand, slipping her fingers in between mine. She's looking at our hands, but doesn't turn to look at me. She suddenly raises her hand (and mine) and hits her forehead with my hand. I tell her 'No, I don't want to hit you Ella', let go of her hand and stroke her hair, but she repeatedly takes hold of my hand and tries to hit herself again. I try to move bit away from her, but she follows right after me, sitting again glued to my side. (Field notes, with Ella)

Incidents like this kept us aware of the complexity of building ethical fieldwork practice and interpretations. In particular, situations that involved crying, yelling, biting, scratching or hitting, which in the care contexts were often interpreted as signs of distress or anxiety, were troubling for us. We wanted to respect our participants' right to express wide range of feelings, but at the same time we also wanted to feel as certain as possible that our participants were not expressing displeasure towards our presence with these behaviours.

Respecting participants as moral subjects also involved their right to privacy. As Kulick and Rydström (2015, p. 6) note, 'for many disabled people, especially those who live in group homes, or who need assistance to do things like bathe and dress, the line between public and private is blurred, and often it is neither acknowledged nor respected'. We raised the issue of respect for the privacy of our key participants and their housemates early, during the negotiations with the care workers. We asked them to explain 'house rules' concerning privacy (e.g. knocking on door when entering a private room) and to explain how our participants expressed their desire to be left alone. In these discussions, we also defined clear limits to our participation, for example not entering toilet, dressing or other private activities. We mostly stayed in the shared rooms and exercised special caution when we entered participants' rooms. Their rooms were private spaces and we needed to think about the justification for entering them. Therefore, we paid attention to their reactions (typically bodily expressions) in order to get a confirmation of some kind that they were happy to have us in their rooms.

However, while we accepted respect for privacy as a general rule, we also took into account individual differences and contextual complexities. For example, Frida seemed to enjoy spending time alone in her room, listening to music or resting in bed. Both Frida's parents and the care workers explained that this was because Frida had shared a room with two other residents when she lived in an intellectual disability hospital. For Reetta, Frida's 'own little home' (her father's expression) seemed a very private space, and in a sense this privacy was something that had been defined, at least partially, by Frida herself. However, since Frida's room was so important for her, it was important to spend time there with her. Reetta reasoned that her presence there would be justified as long as she could do it in ways that Frida accepted.

Since our research participants lived in group homes, we entered not only our key research participants' private spaces but their housemates' homes as well. Group homes are, or at least should be, first and foremost homes, but they are also workplaces for people who support and assist the residents in their everyday lives. In order to do research in an ethical and considerate manner, we had to consider in advance how our presence in these contexts would affect the residents and the staff.

Gradually, we realised that the effect that our presence had in these everyday contexts depended on how the care was generally organised. In contexts that were stable in terms of who and how many people (in a team) worked with service users, it was relatively easy for us to find ways to participate that suited the staff and respected the social conventions of the unit. In some contexts, change was more a rule than an exception, with care workers changing continuously (due to the rota, the way work was organised, and replacement workers covering absent staff members). In these contexts we needed more time to internalise their conventions, structures and rules but we also felt that our presence there did not raise as many questions and as much attention as in more stable contexts. As people were constantly coming and going in these contexts, we researchers were not the only new faces asking about the 'house rules' and everyday practices, or just trying to work out a way to 'fit in'.

Almost all the daily activities of our research participants were organised in groups (group home, day activity centre), where, due to limited staff resources, the service users got only a very limited amount of one-to-one time with the care workers. Since our participants had very high support needs, they spent long periods of time waiting for care workers to involve them in activities. Our presence made it possible for the participants to have someone there during these times to watch TV with, to communicate with, or just to 'hang out' with. In some contexts and with some participants it was easier for us to find ways of being 'useful' (the extra pair of hands that enabled their participation in surrounding activities) and thus do fieldwork in a more participatory manner. This, however, required that we already were aware of the general institutional practices, how they were applied individually with our research participants, and also what our participants' preferences were concerning support.

Frida's group in the day centre is decorating gingerbreads for the upcoming Christmas party. When others are already finishing, there are still two gingerbreads on Frida's plate. I talk to Frida, ask whether we should still decorate these two. I take a gingerbread in my hand and a tube of sugarpaste in the other, and hold my hands in front of Frida. Frida's eyes are fixed on the gingerbread while I squeeze the tube. I ask Frida did it turn out ok, she reaches her hand out and touches the gingerbread quickly. I take another gingerbread, once again bring it and the tube close to Frida. Frida reaches her right hand forward, stretches her fingers and takes hold of the tube. We stay holding the tube for about a minute together, until she lets go of the tube. I continue by squeezing some sugarpaste on the gingerbread. (Field notes, with Frida)

Our relationships to the staff members in different contexts varied. Typically, the coordinating care workers of our research participants were eager to tell us their interpretations about the participants and their behaviour. Some of them seemed to regard our project and our presence in the field as a chance to reflect on their own work. They shared their knowledge about the history and rationale of current practices: why, for example, Ella's life looked the way it did, and what kinds of change had taken place in her life during the past years. While some care workers remained reserved and distant, most of them engaged with us in discussions, and reported to us the everyday comings and goings of our participants.

Don Kulick (2015) argues that researchers take not only political and epistemological risks (for getting it all wrong) but personal risks as well when engaging with difference respectfully: fieldwork is 'a transformative experience that renders one a different person by the end than one was when one started' (p. 31). The obligation to make sense of our research participants (e.g. how they communicated, what kind of interaction they preferred) pushed us into very intensive form of fieldwork. In order to find an ethically sound way of being in the field with our research participants, we needed to learn to understand their communication. From the point of view of a researcher, this meant that we immersed ourselves into the process of making sense: we had to tune ourselves to note even the smallest gesture or facial expression, even breaths, in the moments.

We were delighted, and also somewhat overwhelmed, about the close and meaningful relationships we were able to build with some of our research participants during the fieldwork. These relationships also meant that we could not emotionally remain mere bystanders. While we experienced many moments of shared joy in the field, we were also distressed by the shortcomings of the care system and its practices. Being present in situations where, in our view, the care was substandard, felt painful – situations, where, for example, the care workers ignored the residents' need for sociability and acted as if they did not even exist. In all fairness, these moments were mostly matters of the culture of some group homes rather than conscious neglect or mistreatment.

#### **Embodied ethnography in practice: writing field notes, constructing interpretation**

The issue of sufficient time for ethnographic fieldwork has been a source of various methodological debates. Some have argued that, in order to make any sense of people and culture(s) in a specific context, one should stay in that context for years.16 This view has, however, become questioned as the focus of ethnographic inquiry and our understanding of what makes an ethnographic field have become more diverse (e.g. Marcus, 1995). But, often, the standards of one's discipline and practical concerns (what is actually possible within frames set by funding, one's research context, and the participants) determine how the research is carried out (Honkasalo, 2008).

One of our main concerns was how much time we would need in the field in order to get a grasp of the everyday lives of our research participants – where they take place, with whom, and what kind of aspects in these contexts and relationships are important regarding a good life, as well as how much time would be required to make sense of the individual means and preferences of our research participants regarding communication and interaction. Could we learn to interpret our research participants in the

<sup>16</sup> When Simo was writing the funding proposal for the project, he asked Eva Kittay how long one should observe persons with PIMD to understand them properly. Eva replied: 'A few decades would do.'

timeframe provided by the research funding (considering that one criterion for the recruitment of our participants was people who had been in their lives for years and experienced difficulties with interpreting their communication)?

We found out relatively soon that it did not take very long to build a general picture of the research participants' lives. This realisation formed one of our key findings, namely that our participants lived generally very 'narrow' lives. Each of our participants had only a few places where they spent time, typically group home and day activity centre. Almost all of their social contacts were with people in these contexts. Additionally, our participants' days could be described as repetitive. The pace and content of their lives were typically determined by care routines, and only very seldom did something break this routine. We learnt soon that four hours in a group home or in a day activity centre can actually be a very long time, filled with slowly passing moments, only to be interrupted by short moments of interaction with staff members (or sometimes family members). Our decision to experience these everyday comings and goings alongside our research participants meant that we also had to slow down our pace and adjust to their time. In fact, we were often the only non-disabled people in their surroundings who were able to take this kind of time. The staff members' time was limited and they mostly focused on completing tasks related to basic care such as eating, toileting and dressing.

Unlike most people close to our research participants, we had access to (all) settings of their lives. The various professionals who worked with them, on the other hand, only knew what was going on regarding their particular realm of expertise. This divide was most obvious between our research participants' home lives and their activities in the day activity centre. Staff members of group homes and day centres had yearly meetings to discuss whether the services met the needs of the service users. The units kept contact in-between these meetings by exchanging latest happenings with a notebook that moved between home and day centre with the care user, or occasionally by email. In the case of Anna, for example, whose health was a topical issue during the fieldwork, these meetings and exchange between group home and day centre focused on her health. However, the professionals did not seem to have a sense of the everyday practices in the other context. After only few weeks in the field, we found ourselves in a situation where we were the ones who were asked detailed questions in the group home about the ways some aspects of Anna's and Ella's care were handled in the day centre, and the other way round. Similarly, family members used us to get a fuller picture of the everyday lives of our research participants, asking us questions about their daily activities, routines and well-being.