Narrowed Lives

NARROWED 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? NARROWED Do they have basic rights to activities most of us take for granted: activities like sociability, sexuality, and moral affirmation? LIVES Narrowed Lives is an illuminating portrait of what life 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 guaran- Meaning, Moral Value, tee individuality and dignity against a backdrop of scarce resources and misguided policies. The book is a sober- and Profound ing account of how the lives of people with profound Intellectual Disability intellectual and multiple disabilities are restricted, not Mietola & Vehmas primarily because of their impairments, but, rather because well-meaning intentions do not always work out that way in practice. 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 This work is licensed under the Creative Commons Attribution 4.0 Unported License. To view a copy of this license, visit creativecommons.org/licenses /by/4.0/ or send a letter to Creative Commons, 444 Castro Street, Suite 900, Mountain View, California, 94041, USA. This license allows for copying any part of the work for personal and commercial use, providing author attribution is clearly stated. 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 harm- ful 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 con- front 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 criti- cally 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 ex- pertise to this particular project. The responsibilities of an Editorial Board at Stockholm University Press include: • Making academic assessments of incoming book proposals and engaging with the peer-review process for book proposals and book manuscripts. • Striving to meet the needs of the readership as well as the authors. • Aiming to improve the academic quality of the material sent for evaluation through a peer-review process and adhering to good editorial practices according standards defined by the Committee of Publication Ethics (COPE, http://www .publicationethics.org). • Using a quality-assured process to reach and maintain this aim. • Championing the freedom of expression. • Maintaining the integrity of the academic record. • Ensuring that the intellectual and ethical standards are pre- cluding any business or institutional needs. • Ensuring that the published books maintain high standards for the refereeing and acceptance of the final version. Editorial Board • Erik Angner – Professor, Department of Philosophy, Stockholm University, Sweden • Lucy Pickering – Senior Lecturer in Medical Anthropology, University of Glasgow, UK • Magnus Tideman – Professor in Disability Studies, School of Health and Welfare, Halmstad University, Sweden • Jan Walmsley – Visiting Chair in History of Learning Disability at The Open University, UK 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 who- le 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 • Christopher Goodey, Professor Emeritus, UK. • Phillippa Wiseman, PhD, Lecturer in Research Methods, Institute of Health and Wellbeing, University of Glasgow, UK Reviewers of the Book Manuscript • Iva Strnadova, Professor in Special Education and Disability Studies, University of New South Wales, Sydney, Australia • Philippa Wiseman, PhD, Lecturer in Research Methods, Institute of Health and Wellbeing, University of Glasgow, UK 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

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