Ethical and Methodological Dilemmas in Social Science Interventions: Careful Engagements in Healthcare, Museums, Design and Beyond 3031441184, 9783031441189

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Ethical and Methodological Dilemmas in Social Science Interventions: Careful Engagements in Healthcare, Museums, Design and Beyond
 3031441184, 9783031441189

Table of contents :
Contents
Chapter 1: Introduction: Doing Engagements and Interventions with Care
Engaged Research in STS
Care in STS
Towards Careful Engagement
References
Part I: Crafting and Configuring Engagement
Chapter 2: Project Engagement Technologies and Their Role in Shaping Conditions for Engagement and Care in Participatory Desig...
Introduction
On Care and Design Relations
Project Engagement Technologies: Pipe Cleaners, Paper Cards, and Different Forms of Care in a Design Workshop
Frictions Between Project Engagement Technologies (PET) and Intended Users: Care for Collective Activity or the Quality of Spe...
Disjointed Accountabilities: Caring for Project Progress or Users´ Resistance to Engaging with Materials?
Concluding Discussion: Project Engagement Technologies as an Analytic Tool to Unsettle `Careful Engagements´ in Design Projects
References
Chapter 3: Mapping Careful Engagement: From Reflexivity to Response-Ability
Introduction
From Reflexity to the Care-Full Lens of Response-Ability
Thinking with and Returning to: Introducing the Participatory Research and Development Process
Careful Engagement in the Minor
Careful Engagement in the Middle
Un/Learning Care(ful Engagement)
Thinking Careful Engagement with Response-Ability
References
Chapter 4: Composing Telehealth: Drawing Actors Together to Enact New Relations
Introduction
Background: National Rollout of COPD Telehealth Services in Denmark
The Commitment to Telehealth Services
Theory: Inscriptions and Their Contextual Processes
The Telehealth Platform Disturbs Existing Care Relations
Composition as Caring
Following the Making of Telehealth
Drawing Actors Together to Enact New Relations
Steering Committee-Meeting (A): Doubt About Where Telehealth Is Heading
Steering Committee-Meeting (B): Time to Summon the Key Professionals
The Cross-Sector Workshop: Assessing Relations Prior to the National Rollout
Steering Committee Meeting (C): From Collaborative Routines to Old Peoples´ Use of the Platform
Methodological Dilemmas
The Controversy About Focus
The Challenge of Being an Academic in a Practice Field
Renegotiating Care Tasks
Conclusion: Assessing and Enacting New Relations by Drawing Actors Together
References
Chapter 5: To Care for the Possible: Configuring Care in the Teledialogue Project
The Teledialogue Project
Care as Assemblage
Care as Installed
Care as Surprisal
Concluding Remarks
References
Chapter 6: Researching Alongside: Engagements Inside and Outside the Academic Domain-A Look Back at Participatory Research on ...
Research on Care with Residents´ Participation
Imbuing ``Thinking with´´ with Social Presence
Plurality of Engagements and Work on Synchronization
Join the Community
Get Involved
Facilitate
Explore
Adjusting and Synchronizing Social Presence to do Research Together
Researching Alongside: Research that Takes Multiple Paths
Discussing
Walking
Writing
Researching with, Researching Alongside
Conclusion
References
Chapter 7: Fostering Inclusive Technologies: Being Alongside Care in the Workplace
Inclusive Employment as a Matter of Care
Experimental Methods for Being Alongside
Be app
Care Out There
Care We Bring
Being Alongside
Vitality Now
Care Out There
Care We Bring
Being Alongside?
Discussion
Conclusion
References
Part II: Frictions and Troubles in Careful Engagement
Chapter 8: Caring in Precarious Times: Engagement as a Situated Discreet Practice
Introduction
Engaging in Precarious Infrastructures
Engaging in Care Politics
Doing Research in Austerity Times: Beyond Heroic Tales
Final Words: Engaging as a Situated Discreet Practice
References
Chapter 9: Encouraging Care and Allowing Space: On the Aftermath of Careful Engagement
Starting at One End
The Project: Values of Welfare Technology
Not Taking Sides but Encouraging Care
Fieldwork and Workshop
and Fieldwork Again!
The Report
The Actual End
Reflections on Aftermaths and the Importance to Move Slow
References
Chapter 10: Into a Worm(w)hole: Troubling Careful Engagements at the Museum and beyond
Prologue: Enter a Worm(w)hole
Act I: Inviting Larvae into My Home
Act II: When Wax Worms Meet the Antibiotic Museum
Act III: Arts for Noticing: Performing Vibratory Entanglements
Epilogue: And Then They Died Again Of Mastery, Mould and More to Come
References
Chapter 11: Careful STS Interventions in Transdisciplinary Environmental Research
Introduction
Transdisciplinary Environmental Research
Concern and Care for Water
STS and Caring Collaborators
Organised Publics Caring for Water
Caring to Do Transdisciplinary Environmental Research
STS Interventions in Science
Artful Contamination of STS
Caring for Interventions
Careful STS Tinkering
Concluding Remarks on the STS Duty of Care in Transdisciplinary Environmental Research
References
Chapter 12: Caring for Methods: `Care-Ful Method Practice´ through Methodography
Introduction
Sites and Concepts of Care in STS
From Care-Ful Research to Care-Ful Method Practice
Limits of Care
Structure of the Chapter
Methodography
Meta-Methodographic Experiments: Re-Presenting the Cases
Case 1: Singleton and Law (2013)
Case 2: Akrich and Rabeharisoa (2016)
Case 3: Endaltseva and Jerak-Zuiderent (2021)
Analysis
Caring with Methods
Accountability
Limits and Friction
Conclusion
References
Part III: Affects in Care and Engagement
Chapter 13: Practicing Care-as-Affect and Engagement-as-Critique: Careful Engagement in Socio-Technical Integration Research a...
Introduction
Affects
Careful Engagement
STIR and VRE
Analysis of Vignettes
Stimulating Reflexivity and Reciprocity through Careful Assimilation in a Moment of Disconcertment in STIR
Recognizing Multiplicity and Mutual Respect by Working through Ambivalence with Careful Scrutiny in VRE
Concluding Remarks
References
Chapter 14: Enactments of Evidence-Basing: Integrating Layers of Care
Introduction
Introducing the Project
Making & Doing Careful Evidence-Basing with a Social Care Provider
First Phase: The Move from Observer to Intervener
Second Phase: Experimenting with Evidence-Basing
Third Phase: Learning about Evidence-Basing
Conclusions: Affective Navigation when Integrating Layers of Care
References
Chapter 15: Caring for the Bureaucracy
Introduction
Setting the Scene
Entering the Office
First Trouble: Staying Useful when the Concepts Are Problematic
Re-Problematizing: Becoming a Useful Idiot
Second Trouble: Liveability for Nonhumans
Re-Problematizing: Idiotic Accounts of Trees
Third Trouble: Opaque Politics
Re-Problematizing: Caring for the Bureaucracy
Conclusion
References
Part IV: Engaging the Body
Chapter 16: A Carefully Engaged Researcher´s Body
Introduction
The Phantom: An Assembly with the Researcher´s Body
Care in Work-Life Research
The Body
Heterogenic Listening and the Assistive Technologies of the Phantom
Affected by the Slaughterhouse
The Journey of the Phantom into the Analytical Landscape
Phantom Pain: Re-Actualization of Socio-Material Experience
Phantom Pain as a Driver of Analysis
Conclusion
References
Chapter 17: Among Bodies and Machines: ``Epistemological Vulnerability´´ with Exoskeletons
Introduction
Entering the Field
Dis/Locations of Care
Binary Forms of ``Care in Practice´´: Further Perspectives on ``Epistemological Vulnerability´´
To Conclude: Fieldworking with Care
References
Chapter 18: Making Voices: Curating Encounters with Personal Experiences in an Exhibition Space
Introduction
``Giving Voice´´ and Listening
Care, Knowledge, and Response-Ability in ``Making Voices´´
Constructing and Encountering the Installation
``Making Voices´´
Discussion
References
Chapter 19: On Being Carefully Useful: Body (Ing Work) in Ethnographic Collaborations
Engaging with RuMSS
Bodying Work
Tensions for Careful Engagement
The Embodied Modalities of Being Useful
On Pausing
Conclusion
References

Citation preview

Doris Lydahl Niels Christian Mossfeldt Nickelsen   Editors

Ethical and Methodological Dilemmas in Social Science Interventions Careful Engagements in Healthcare, Museums, Design and Beyond

Ethical and Methodological Dilemmas in Social Science Interventions

Doris Lydahl • Niels Christian Mossfeldt Nickelsen Editors

Ethical and Methodological Dilemmas in Social Science Interventions Careful Engagements in Healthcare, Museums, Design and Beyond

Editors Doris Lydahl Dept of Philosophy, Linguistics and Theory of Science, University of Gothenburg Gothenburg, Sweden

Niels Christian Mossfeldt Nickelsen Faculty for Health and Social Science Centre for Health and Technology University of South-Eastern Norway (USN) Drammen, Norway

ISBN 978-3-031-44118-9 ISBN 978-3-031-44119-6 https://doi.org/10.1007/978-3-031-44119-6

(eBook)

© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland Paper in this product is recyclable.

Contents

1

Introduction: Doing Engagements and Interventions with Care . . . Doris Lydahl and Niels Christian Mossfeldt Nickelsen

Part I 2

3

4

5

6

7

1

Crafting and Configuring Engagement

Project Engagement Technologies and Their Role in Shaping Conditions for Engagement and Care in Participatory Design Projects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Marie Ertner, Signe Yndigegn, Giacomo Poderi, Joanna Saad-Sulonen, and Helena Karasti

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Mapping Careful Engagement: From Reflexivity to Response-Ability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Suvi Pihkala and Helena Karasti

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Composing Telehealth: Drawing Actors Together to Enact New Relations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Niels Christian Mossfeldt Nickelsen and Paul Duguid

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To Care for the Possible: Configuring Care in the Teledialogue Project . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Peter Danholt, Lars Bo Andersen, and Peter Lauritsen

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Researching Alongside: Engagements Inside and Outside the Academic Domain—A Look Back at Participatory Research on Mutual Aid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Myriam Winance, Marc Bessin, and Claire Ribrault Fostering Inclusive Technologies: Being Alongside Care in the Workplace . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Mike Grijseels, Barbara Regeer, and Teun Zuiderent-Jerak

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Contents

Part II

Frictions and Troubles in Careful Engagement

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Caring in Precarious Times: Engagement as a Situated Discreet Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117 Cíntia Engel and Helena Fietz

9

Encouraging Care and Allowing Space: On the Aftermath of Careful Engagement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129 Doris Lydahl

10

Into a Worm(w)hole: Troubling Careful Engagements at the Museum and beyond . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 143 Martin Grünfeld

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Careful STS Interventions in Transdisciplinary Environmental Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157 Catharina Landström

12

Caring for Methods: ‘Care-Ful Method Practice’ through Methodography . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 171 Julie Sascia Mewes and Ingmar Lippert

Part III

Affects in Care and Engagement

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Practicing Care-as-Affect and Engagement-as-Critique: Careful Engagement in Socio-Technical Integration Research and Video-Reflexive Ethnography . . . . . . . . . . . . . . . . . . . . . . . . . . 189 Mareike Smolka and Jessica Mesman

14

Enactments of Evidence-Basing: Integrating Layers of Care . . . . . . 209 Isabella Pistone

15

Caring for the Bureaucracy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 225 Ask Greve Johansen

Part IV

Engaging the Body

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A Carefully Engaged Researcher’s Body . . . . . . . . . . . . . . . . . . . . . 243 Katia Dupret and Jo Krøjer

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Among Bodies and Machines: “Epistemological Vulnerability” with Exoskeletons . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 257 Denisa Butnaru

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Making Voices: Curating Encounters with Personal Experiences in an Exhibition Space . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 271 Tine Friis and Louise Whiteley

19

On Being Carefully Useful: Body (Ing Work) in Ethnographic Collaborations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 287 Alexandra Endaltseva and Sonja Jerak-Zuiderent

Chapter 1

Introduction: Doing Engagements and Interventions with Care Doris Lydahl and Niels Christian Mossfeldt Nickelsen

How researchers engage with their field and the consequences of different forms of engagement has been a long-running discussion within the social sciences and humanities. While some researchers argue that engaging and getting too close to the field of study can compromise ‘objectivity’ or ‘neutrality’, others warn that maintaining too much of a distance prevents the researcher from understanding and/or making suggestions to improve problematic or unethical conditions. This edited volume elaborates and expands on this discussion by developing an understanding of careful engagements as a generative mode of knowledge production. In one way or another, the chapters all discuss researchers’ footwork, ambitions, and tools for engaging carefully, as well as the frictions and problems that emerge. The idea for this book sprung out of a discussion of our common cares and concerns starting at the Society for Social Studies of Science (4S) annual meeting in New Orleans in 2019. Both of us, science and technology studies (STS) scholars, one senior (Niels Christian) and one more junior researcher (Doris), had long been interested in how to engage with various types of informants during the research projects we conduct. We are both concerned with innovation and the digitalization of later life care and conduct ethnographic research in the field of healthcare and welfare. Moreover, we both had experiences navigating the temptations and seductions that are often present when doing engaged research (Nickelsen, 2009). Niels Christian was particularly preoccupied with attempts to rethink interventionist

D. Lydahl Dept of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Gothenburg, Sweden e-mail: [email protected] N. C. M. Nickelsen (✉) Faculty for Health and Social Science, Centre for Health and Technology, University of SouthEastern Norway (USN), Drammen, Norway e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_1

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research, while Doris was fascinated by ideas about research as a form of caring. What if the two could be combined, we pondered. What if—as suggested by LópezGómez (2020)—care could be used as a heuristic for engaged research? In 2020, we hosted an open panel at the 4S annual meeting held in Prague (but online due to circumstances at the time) with the title ‘Careful Engagement’. To our surprise, a substantial number of abstracts were submitted leading to a fascinating discussion spanning several sessions. After the annual meeting, we were contacted by two independent publishers, each encouraging us to compile an edited volume focusing on researchers’ engagement with their fields of study. We ended up collaborating with a third publisher promising to ensure high visibility for the volume as both a physical and online publication. A famous advertisement in Denmark states: A good cheese takes the time a good cheese takes. The same can be said of this book. It has been underway for some time, and we believe this lengthy process has helped hone the ideas presented in this edited volume. The idea of purposefully affecting research fields in social science and the humanities has a long tradition both inside and outside STS. The notion of research field can be traced back to the German-American social psychologist Kurt Lewin, who shortly before his untimely death developed the notions of force field analysis, action research and group dynamics (1947). These notions are important bricks in his plea for planned change. Lewin’s aim was to map out the totality and complexity of social action and he was never naïve about his idea of planned change. Action research, he argued, should be carried out as a dialogic process between researchers and organizational or community insiders, never to or on them. With this now somewhat outdated but still important set of ideas in mind, we see a growing interest in the applicability of social science, with much attention given to developing methods to establish links between research and other practices. In an interesting book, Flyvbjerg and Sampson (2010) ask why social science fails and how we can make it matter? They contend that the strength of the social sciences lies in rich, reflexive analysis of values and practices essential to communities, organizations, and societies. Our contribution to making social science matter even more than is already the case, is to add greater nuance to the researcher–field relation and to learn from other researchers’ experiences and the frictions and problems they have encountered concerning remaining focused on the field of study while engaging with various groups of stakeholders. Engaged research, we propose, is currently being revived to counter the overly quietist tradition of knowledge generation that, according to some researchers, has developed in recent decades (Haraway, 2016; López-Gómez, 2020; Star, 1991). On the one hand, many researchers want to become more engaged and make a positive contribution in an increasingly polarized world; on the other hand, many research grants come with stipulations about partnerships with actors outside academia. The EU, welfare state bodies and private companies pour significant sums into research and expect a return on their investment in the shape of knowledge that can be used to elaborate on, participate in and suggest solutions to socio-technical problems of many kinds. Thus, we believe the social science community is ready for fresh ways of thinking about how researchers engage with the fields, collectives, or social contexts they study.

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Engaged Research in STS Engagement has been a prominent topic within the field of STS since its inception. In the 80s, Hacking (1983) argued that science cannot be understood solely as a matter of understanding different aspects of the world; it must also be seen as a tool to change the world. There is a long tradition in STS of distinguishing between ambitions to ‘understand’ and ambitions to ‘change’ science and technology. In a historical overview, Sismondo (2010) identified ‘the high church’ and ‘the low church’ of STS. These modes of research, originally addressed by Fuller (1997), differ in terms of style, focus, and goals. The high church develops sophisticated understandings of scientific and technical knowledge, as well as the processes and resources contributing to that knowledge. As such, the high church challenges traditional perspectives in philosophy, sociology, and history of science. The low church critically addresses policy and governance and aims at reforming science and technology in accordance with principles of equality, welfare, and environmentalism. However, even within the realm of the high church, engaged research has been a subject of discussion. In the 1970s, during the early stages of STS, the concept of symmetrical neutrality emerged, as seen in the Edinburgh School’s strong programme in the sociology of knowledge. The basic idea behind symmetrical neutrality was to study all scientific endeavours equally, without considering their presumed truth or falsity. However, Scott et al. (1990) soon argued that researchers that study controversies symmetrically risk being ensnared when attempting to maintain neutrality, as individuals with lower scientific credibility often attempt to influence the researcher. Consequently, Scott et al. proposed that epistemological symmetry often leads to social asymmetry or non-neutrality (1990). Correspondingly, within STS, there is a longstanding and growing interest in developing methods to not only understand and describe science and technology, but also engage in the fields and practices studied and thereby establish closer links between research and other practices. Concepts such as ‘mode 2’ (Nowotny et al., 2003) and ‘engaged scholarship’ (Van de Ven, 2007) signal this ambition. Recently, quite a lot of work has been done in STS to develop theories and methods of engaged research (Bruun Jensen, 2007; Downey, 2021; Zuiderent-Jerak, 2016). Indeed, in 2014, the Society for Social Studies of Science (4S) launched a new initiative to highlight this issue, posing the question: how do STS researchers participate in ‘making and doing politics and science?’ This has been a busy and in-demand activity at the annual meetings ever since its introduction. In addition, in 2015 the Society for Social Studies of Science launched the open access journal Engaging Science, Technology and Society (https://estsjournal.org/index.php/ests/ aims_and_scope), not only as a venue for intellectual exchange, but also as a place for engaged STS. This initiative was supposed to follow up former 4S president Gary Downey’s vision for scholarship as a form of critical participation. Zuiderent-Jerak (2016) has suggested that one of the crucial problems in discussions of intervention is that the act of engagement is detached from discussions of the production of knowledge. By ‘twisting the lion’s tail’, he proposes interventions be understood as

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situated experiments—that is, as a generative mode of knowledge production. This idea has a central position in many of the chapters in this volume. See for instance Chaps. 4, 10 and 17. In the following, we identify two ways of approaching engagement from a theoretical perspective of care that permeate the chapters of this volume. Importantly, while it may seem that these two approaches are separate and not in dialogue, there are many partial connections between them (Lindén & Lydahl, 2021; Strathern, 2004). These two approaches have served to inspire the authors of many of the following chapters to think about careful engagements.

Care in STS The first approach to engagement has been called ‘care in practice’. This is an understanding of care as persistent tinkering. To tinker is to shape and arrange humans and non-humans in ways that suit them (Winance, 2010, 2019). As such, care and careful engagements emerge in relation to continuous experimenting with people and non-humans. Care in practice scholars have emphasized the importance of studying goods and values within the setting under study, rather than engaging with and bringing in normativities from the outside (Mol et al., 2010). Thus, care in practice employs a form of empirical philosophy aiming to study facts, concerns, ideas of what is good, and values produced in situ (Pols, 2015; Pols et al., 2017). Jeannette Pols, an influential care in practice scholar, conceptualizes this as empirical ethics, studying normativity in practice. Drawing on observations and situated analysis, researchers can engage carefully and suggest improvements. In this context, Pols (2008) has stressed the promise of approaches that are re-scriptive (rather than descriptive or prescriptive) and suggestive (rather than abstract and quiet), interfering in the practices studied and encouraging (self-)reflection on implicit notions of good care (Pols, 2008). Latour insisted that the researcher should continue to strive towards a nuanced description of the assembly of interest and matters of concern (Latour, 2005). Pols’s work is inspired by this, but also by feminists STS scholars. In principle, a description is always partial (Haraway, 1988). Thus, the concept of re-scriptions clarifies that the description is the researcher’s partial observation, thereby emphasizing that the researcher in some sense stands between the description and the observed. The second approach has been called ‘critical care’ (Martin et al., 2015). A key issue in this approach is to draw attention to questions of power, to the non-innocence of caring, and to the exclusions produced and reproduced in and through care. Critical care scholars thus add an important dimension to the notion and practice of careful engagements. Asking ‘what are we encouraging caring for?’, Puig de la Bellacasa (2011, p. 92) urges us as researchers to not only examine how care is enacted in the practice under study, but also to reflect on our own care and concerns: what worlds do we, as researchers, want to question, encourage, or strengthen through our research and our engagement. Thus, critical care presents

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itself as ‘more than following the actors and less than showing the way’ (Puig de la Bellacasa, 2017, p. 143). In an interesting essay titled ‘What if ANT wouldn’t pursue agnosticism but care?’, López-Gómez (2020) makes a similar argument. While he found agnosticism through sorting frictions useful in opening critical discussions about political and social implications of science and technology, López-Gómez noted that an agnostic repertoire: seemed to make me quite insensitive towards the violence of the aforementioned frictions, to its uneven distribution and consequences for the actors at stake; it was as if I could point out the struggles without being touched or moved by them (López-Gómez, 2020 p. 7).

Therefore, López-Gómez suggests using care as a heuristic for ‘taking sides, participating, acting, making a choice, taking a position, but without taking for granted a general or fundamental principle on which these actions would safely and coherently be grounded’ (López-Gómez, 2020, p. 10). Murphy’s (2015) and Nicholls’s et al. (2021) focus on unsettling care and the critique of the ‘care turn’ invites us to bring to the fore the troubles including forms of violence in which we stay when engaging carefully. Several chapters in this volume reflect upon the tensions, frictions, limits, and consequences of these engagements from a non-innocent position (see for example Chaps. 9, 10, 13, 14, 19). What is potentially excluded and what limits are encountered when engaging carefully? Studies of care in STS (Lindén & Lydahl, 2021) draw heavily on feminist care ethics in which care has been understood as ‘everything we do to maintain, continue and repair our world’ (Tronto, 2013). This conceptualization, as well as later approaches to care in STS, is at its core engaged. While problematizing the violence and exclusions made in and with care, there is both a call in ‘the care in practice’ and in ‘the critical care’ approaches to support care. Mol et al. (2010) have underlined the importance of scholarly attention to care on its own terms, as such attention otherwise risks eroding the care practices being studied. In an oft-cited article, Puig de la Bellacasa (2011) reframes Latour’s (2004) notion of ‘matters of concern’ to talk about ‘matters of care’. Latour had argued that STS scholars’ obsession with the constructedness of matters of facts risks contributing to the dismantling of techno-scientific achievements (Latour, 2004). He therefore proposed a shift of attention from ‘matters of fact’ to ‘matters of concern’, by which he meant a concern for the associations or assemblages holding objects together, suggesting not to deconstruct but to study how things assemble. Meanwhile, Puig de la Bellacasa argues that matters of care ‘has a stronger affective and ethical connotation [and] is more easily turned into a verb: to care’ (2011, p. 90). In her definition, care is ‘an affective state, a material vital doing, and an ethico-political obligation’. Importantly, Puig de la Bellacasa argues that the representation of socio-technical assemblages as matters of care not only encourages making invisible care work visible but is also an imperative to generate care. This, she argues, means ‘counting in participants and issues who have not managed or are not likely to succeed in articulating their concerns’ (Puig de la Bellacasa, 2011, p. 94). To generate care, or to improve the conditions of care, is also an important theme in the chapters in this volume.

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Several authors describe, unpack, discuss, and problematize their efforts to make care practices flourish—both the care enacted in the practices under study and the researchers’ own care (see for instance Chaps. 3, 7, 8 and 18).

Towards Careful Engagement This edited volume presents several contributions that discuss careful engagements based on the approaches presented above. Importantly, our goal is not to provide a package of methodological guidelines or strategies for careful engagement (Zuiderent-Jerak, 2016). Instead, the chapters provide creative, and empirically detailed, explorations of connections between caring and intervening, using care as a heuristic for interventionist and engaged research. The questions discussed include: how can we draw on ideas of care to carefully engage with practice, generating knowledge and establishing fruitful collaboration with relevant partners? How can we develop re-scriptions and what does suggestive participation imply? What inequalities do we risk (re)producing, especially when there is funding involved in the research? How can we take sides without taking for granted a fundamental principle of action? What tensions and obstacles do we encounter when striving to engage carefully? How does careful engagement affect academic work and output? Are there examples of careless engagements? The volume provides theoretical reflections on these issues and questions as well as a large number of empirical examples of how researchers strive to craft and configure careful engagement. In line with this, we want to move from only theorizing about to engaging with and thus interfering in fields of study. However, as indicated above, some STS researchers reject this dichotomy between description (understanding) and intervention (change), making the case that STS has always been engaged—offering different perspectives, taking part in discussions, attending sites. This critique is useful to make the point that any description will always, in one way or another, participate in the world it describes and thus to distinguish between ‘intervention as performance’ and ‘intervention as an act of will’ (Elkjaer & Nickelsen, 2016). Descriptions exist in the world and therefore always come between its constituents’ parts. Other researchers have proposed the design of ‘intervention as an act of will’ as a non-strategic and non-detached scholarly experimental method where the purpose is to learn from controversies and to care for the collectives studied without violating concerns for reflexivity, situatedness, and mess (Zuiderent-Jerak, 2016). By analysing researchers’ ways of intervening in the fields studied, Elgaard Jensen proposes three different modes of engagement (Elgaard Jensen, 2012): (1) ‘Invitations’, where analyses are performed from a somewhat marginalized position; (2) ‘Availability’, where the researcher is invited not only to describe but also to participate in discussions with the studied collective; and (3) ‘Composition’, where the researcher is involved in creating new relations and effects by mediating between previously unconnected actors. The researcher often faces substantial difficulties in

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holding everything together. The composition mode is criticized by some researchers for sacrificing the researcher’s clear-sightedness and special role as an impartial actor. We prefer the notion of careful engagement to that of intervention and propose that certain applications and practices of intervention can be fruitless. The various forms of participation and intervention in research projects, we argue, become clearer when examined within the framework of careful engagements. Firstly, in some cases, intervention is a term used to imply one-way causation, suggesting that those conducting interventions can enact their will on a field of study and those within it while themselves remaining free of any outside influence. As we learn from several chapters in this book, during field studies, informants sometimes attempt to influence other participants, including researchers (see for example Chaps. 4–6 and 15). Researchers may even be viewed as attractive and influential collaborators who could amplify the viewpoints of certain groups and thereby strengthen their position (Nickelsen, 2009). Secondly, in some applications, the notion of intervention is overly rigid, potentially imposing a new, all-encompassing order or a new era (Ruppert et al., 2013). As evident from the chapters in this volume, researchers prefer to employ a nuanced vocabulary when entering their fields of study. In this sense, Law’s suggestion of replacing the term ‘intervention’ with the more modest ‘interference’ can be useful. According to Law (1994, 2004), the concept of interference directs our attention towards the convergence of several modes of ordering. Thinking with interference acknowledges that various orderings intertwine, interact with one another, and yield somewhat unpredictable effects. As a researcher, when finding oneself confronted by several orderings in one’s field of study, Bruun Jensen proposes the notion of sorting attachments: A performative approach would be concerned with the specific elements, which the researcher attempts ‘to make cohere’ in theory and practice, and which kind of ‘event’ these occasions. I refer to this process as sorting attachments. Sorting refers here to the practical activity of figuring out how to engage with other organizations, institutions, or agendas as part of conducting research. The term attachments points to the fact that no such engagement is innocent, since all actors come packaged with sets of cultural, political, and economic relationships as well as institutionally sanctioned commitments (Bruun Jensen, 2007, p. 239).

Thus, as part of careful engagements, the researcher may want to sort attachments, figuring out how to engage with different parties. Proponents and actors may, as mentioned, have very different ideas, commitments, and values, and they might even want to enlist the researcher to strengthen their own agenda. Therefore, ZuiderentJerak and Jensen have proposed that engaged researchers ask themselves the following questions: Which partial connections with the field do my approach, discourse and activities strengthen? Which partial disconnections do they establish? In addition, what kinds of normativities are enacted through these? (Zuiderent-Jerak & Bruun Jensen, 2007, p. 232).

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These questions and reflections permeate the chapters in this book, and to this is added a focus on the roles the authors play in their studies, as well as their own care and concerns: what worlds do they want to question, encourage, and strengthen through their research and careful engagements? See for example Chaps. 3, 8 and 18. Lynch (2009) proposes enacting the researcher’s engagement through several local-interactional spaces. Local-interactional spaces offer occasions and opportunities for the researcher to present and share observations with key proponents from the studied community. This approach emphasizes that being present and communicating with informants and participants involved in the research makes a valuable difference. In this operational strategy, careful engagements take place as an ongoing and explicit conversation and thinking process on the part of the researcher, while interacting and communicating with participants from the studied field. See for instance Chaps. 9, 11 and 15. In relation to this concrete example of how careful engagement may be operationalized into a research design, Vikkelsø points to situations where engaged researchers risk acting as tools in the service of certain influential participants (2007). This may be the case in projects where one group wants to overcome another group’s resistance to obtain a certain goal and at the same time needs the legitimacy of the researcher to do so. To avoid this kind of careless engagement in ethically questionable relationships, engaged researchers may for instance present descriptions such as executive summaries and/or discussion papers outlining pros and cons. This refers to what we formerly called re-scriptions and suggestive research. Undoubtedly, good descriptions can be simultaneously careful, engaged, and influential. Again, this example highlights the importance of sorting attachments in the form of the various normativities, agendas, and controversies faced by the researcher. Viewed from the perspective of STS, careful engagements take place as exchanges (and because of exchanges) between many networks and thus lead to transformations. These may best be seen as multi-directional causations where several actors observe, persuade, negotiate, and influence each other using diverse tools to achieve multiple overlapping goals and spread their ideas and aspirations. It is clear when reading this edited volume that careful engagements can be understood and approached in many interesting and different ways: as a matter of crafting and configuring engagement; as a matter of frictions, trouble, and affect when engaging with the researched community; as a matter of tools such as theories and the human body; and as a matter of engaging alongside. However, we also see a pattern across these approaches and inspirations. We hope it will be clear while reading the chapters that we cannot simply understand careful engagements as a matter of appropriate proximity or distance to a field. A common way of approaching careful engagement is to understand it as thinking aloud with the studied collective about what to do next. Again, this is not only a matter of thinking together, but about putting experiments into action, seeing what is happening, and learning. The main obstacle standing in the way of careful engagement, we suggest, is not the normative deficit in secluded research, nor researchers’ own normativity. Rather, the challenge is for researchers to find ways to deal with the normative excess that flourishes in the many relations in which they take part. The difficult and interesting part is how the

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researcher addresses these multiple normativities and how they compare to the researcher’s own ideas of what is good. In this relationship, the researcher has a lot to give and much to learn. These are the relations and occasions that the book’s chapters scrutinize. In the following, we provide a summary of the chapters to show how they are connected, and each contribute to the book’s project and to the development of the notion of careful engagement. The first part of the book, Crafting and configuring engagement, investigates the shaping of careful engagement as a generative mode of knowledge production. The chapters in this part all zoom in on the material conditions, expressions, and manifestations of engagement with care. Most prominently, they also problematize and critically engage with their own careful interferences. Ertner and Karasti (Chap. 2) examine the relationship between participatory design and care, drawing on experiences from design workshops on welfare innovation for senior citizens in Denmark. They provide an empirical example showcasing how simple technologies used in the workshops (e.g., pipe cleaners, paper cards) not only facilitate specific forms of care but also create exclusions, frictions, and conflicts. The authors introduce the concept of ‘project engagement technologies’ as a tool to analyse how material entities enable certain types of engagement while excluding others. The authors suggest that attempts at careful engagement are crafted activities where project engagement technologies can function as resources for examining conditions for careful engagement. This chapter makes a significant contribution to the volume by exploring how design can offer opportunities for careful engagement. In Chap. 3, Pihkala and Karasti employ the notion of response-ability to think about the ethics and politics of the authors’ engagement in a participatory research and design project. Response-ability is an embodied and embedded sensibility with the ethical injunction to be responsive and to enable the response of others. Informed by response-ability, the authors focus on three layers of engagement. The first layer of careful engagement focuses attention on the minutiae of participatory practices. In the second layer, carefulness is understood to be enacted as responsiveness to emerging concerns in which certain cuts are made. In the third layer, the authors reflect on accountabilities beyond their encounter with each other, and on what happens after a project has ended. Nickelsen and Duguid (Chap. 4) report on a project where they aimed to engage as partners in the appropriation of telemonitoring services for chronically ill senior citizens living with COPD and Diabetes 2. To frame a cross-sectoral discussion among healthcare professionals that had not been gathered before, the authors arranged workshops on the topic of developing telemonitoring. The point was to assess and evaluate relations as a response to the Danish government’s rollout of a national telemonitoring platform and a locally developed app. Throughout the workshops, several care values and performance systems were mapped. Soon, the authors had to give up their ambition of doing cross-sector research. Thus, they experienced the difficulties of mediating between different—and sometimes conflicting—values and practices. The chapter both contributes to and destabilizes

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the notion of careful engagements by addressing not only the task, but also the difficulties of holding together disparate elements that is that which does not easily hold together. In Chap. 5, Danholt, Andersen, and Lauritsen reflect on their involvement in the research and design project, Teledialogue. Here, they acted as action researchers and ethnographers, aiming to facilitate regular communication and interaction between vulnerable children in out-of-home placements and their social educators. The authors examine the matters of care involved in the Teledialogue project and conclude they were not able to provide recommendations and principles for how to care. Such an ambition is both mistaken and contrary to care, they assert. Instead, they view their contribution to careful engagement as a matter of fostering collective thinking with care. They achieved this, not through care programmes or manuals, but by presenting detailed and specific accounts and reflections that diverge from and refract other care models. In doing so, they stimulated the ongoing invention of care that is unique to and closely aligned with the specific circumstances of each situation. Winance, Bessin, and Ribrault (Chap. 6) look back at participatory research focusing on mutual care conducted among a group of vulnerable neighbourhood residents. Meetings, walks, writing workshops, and a booklet constitute the project’s modest tools. Participation throughout the project led the authors to identify four ways of engaging: (1) to join the community, (2) to get involved, (3) to facilitate, and (4) to explore. Holding together the multiple engagements required what the authors call ‘a work of synchronization of the social presence’. Researching alongside took the authors on a journey out of the academic space with its norms for knowledge production. The authors conclude that this research demanded ‘relationship work’ by all parties. This transformed the engagement of all participants into careful engagement. Careful engagement, they propose, is a matter of marshalling the appropriate presence at the appropriate time. In Chap. 7 by Grijseels, Regeer, and Zuiderent-Jerak, the potential of technologies for fostering inclusive employment for people with disabilities is under scrutiny. Reporting on a reflexive evaluation of two pilot projects experimenting with technologies for inclusion, the authors show how care was enacted in two layers: the care ‘out there’ as mobilized within these pilots and the care they as researchers bring with them. They show how the commitments of all participants interacted and evolved in and between these layers, proposing that careful engagement can be understood as a process of being alongside each other’s commitments while together reflecting on and learning about what works in an emerging configuration of technologies for inclusive employment. This chapter is to be read as an exploration of how careful engagement might look in the messy practice of contributing to inclusive employment. The second part of the book, Frictions, and challenges in careful engagement, delves into the numerous problems, challenges, and frictions that arise within careful engagement. Staying with the trouble (Haraway, 2016) inherent in their own careful engagement, the authors examine the frictions (Bruun Jensen, 2007) they encounter

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in practice through the lens of care. This approach allows them to reflect on both the care they practise and the care they generate as researchers. In Chap. 8, Fietz and Engel offer their reflections on care in challenging times. Over a span of 6 years, they conducted research on care for dependent adults in Brazil—a period marked by a major political and economic crisis that impacted healthcare and research. The authors delve into three dimensions of careful engagement identified through their work. Firstly, they discuss the active participation required in creative tinkering to mend precarious infrastructures of care. Secondly, they examine the importance of advocating for sustainable and collective care infrastructures through public stances. Lastly, they emphasize the significance of caring for the conditions that enable research to take place. Based on these dimensions, the authors argue that careful engagement can be viewed as a contextual and discreet practice that is both shaped by and shapes the conditions necessary for research, encompassing material and economic factors. This chapter makes a valuable contribution to the concept of careful engagement by highlighting the significance and challenges when engaging carefully during times of austerity and political upheaval. In Chap. 9, Lydahl reflects on the unforeseen developments that emerged during her fieldwork. She draws upon her experiences from a research project focused on eldercare and welfare technology, highlighting the unexpected trajectory of a research report. The resulting aftermath was largely accidental, partly due to her parental leave, which compelled her to slow down and create time for the healthcare providers participating in her research. Moving slowly when carefully engaging makes time and space available for those one is engaging with to develop and express their own careful engagement. The author argues for a double vision of care—one which is both situated and critical. This double vision was beneficial at all stages during Lydahl’s fieldwork, whether analysing the empirical material or writing the report on her findings. Applying such double vision allows researchers to see and describe the details of delivering care with welfare technology. In relation to what we expect to hear from a museum—stories about conservation—Grünfeld (Chap. 10) provides a form of reverse conversation story. Grünfeld and his collaborators invited fungi and larvae to participate in their investigation of caring at Medical Museion in Copenhagen. This results in an unsettling story about working with wax worms that opens a worm(w)hole, troubling and multiplying what we normally see as caring. We follow the different steps of hosting wax worms: from home cultivation to museum installation and even artistic performance. These translations reveal the simultaneous presence of multiple objects of care. The chapter makes a convincing argument about the ambivalences of care by showing how our careful engagements with living organisms may not just trouble our understanding of what it means to care, but also confront us with the uncontrollable forces of life. Landström’s chapter (Chap. 11) is a response to a growing number of accounts of negative experiences as an STS researcher in collaborative projects. Landström reflects on the challenges of being an STS scholar in transdisciplinary environmental research on water. Using the notions of concerns and matters of care, she brings into

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focus the epistemic and affective dimensions of doing research with others. Drawing on her personal experiences, she considers the challenges that arise when the STS researcher is regarded as an equal member of a research team that aims to change society. She concludes that conducting research in transdisciplinary environmental projects places an obligation on the STS scholar and requires an understanding of how to navigate the specific challenges involved. She emphasizes the need to understand the values of all involved—natural scientists, local communities etc. In Chap. 12, the focus shifts to frictions as the primary theme. Mewes and Lippert propose that methodography serves as a genre for a ‘careful examination of method practice’. They conduct a meta-analysis of three STS texts that explore ethnographic methods and how they account for ethnographic encounters and their inherent frictions. Through methodographic analysis, the authors argue that it becomes possible to analyse how, when, and for whom empirical cases demonstrate care through textual representation. This represents a crucial contribution to the ongoing discussions of care studies within STS as it introduces a methodological perspective on care, which can be viewed as a third layer. While the first layer addresses care as empirical practice and the second layer involves care as an analytic framework, the third layer of care focuses on the types of care researchers enact in and through their research and the texts produced. In the third part of the book, Affects in care and engagement, the authors consider the significance of affects within careful engagements. They contemplate the productive role of specific affects, such as discomfort and unease, in the process of engaging with care. In Chap. 13, Smolka and Mesman discuss how attending to affects during collaborative research projects enhances social bonds and contributes to knowledge production. The authors discuss affectively charged moments in video-reflexive ethnography and socio-technical integration research. From here, they develop the idea of careful engagement as a matter of combining care-as-affect with engagement-as-critique. Affective dimensions, the authors argue, function as a resource to productively destabilize taken-for-granted routines. The chapter contributes to careful engagement by arguing that critique, which stems from intimate involvement with the field, and affective attachments between collaborators generate reflexive engagement with alternatives to taken-for-granted practices, and ethics. Pistone (Chap. 14) discusses her experimentation with evidence-based practice in social care. Building on research that calls for attention to the frictions researchers encounter when doing fieldwork and how such attention is key when conducting experimentally oriented interventions, the author explores frictions in the shape of affects as generative attributes of care in intervention-oriented research. She demonstrates how her intervention-oriented project required continuous reflection on the relations between herself, the staff, and the experiment. Such navigation, she argues, is characterized by discomfort and even anxiety, proposing that these affects are generative attributes of care. In particular, the attention to affect is useful in navigating and integrating the two layers of care (the empirical and analytical layers), which are often blurred.

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Johansen (Chap. 15) recounts his ethnographic engagement with a strategic urban planning office in Copenhagen. The initial purpose of the research collaboration was to develop and study tools for assessing liveability in the municipality. However, the author experienced concerns and unease regarding the anticipated outcomes of their research. Through careful engagement with these troubles, Johansen finds value in pausing to reflect and consider the potential for transforming the situation when a researcher intervenes. Being troubled both by the likely political consequences of building tools for liveability governance and the immediately apparent possible ways of relating as a researcher to this unease, the author suggests that rethinking the notion of the useful idiot, and acting as one, became a viable response. The fourth part of the book, Engaging the body, considers the role of the body, researchers own and those of others in careful engagement. The authors explore what bodies do, how bodies are connected to other bodies, entities and materialities, and what opportunities, challenges, and frictions this brings about. In Chap. 16, Dupret and Krøjer consider a suitable terminology enabling careful reflection on engagement in fieldwork and analysis. To this end, they develop the idea of the researcher as the Phantom. The Phantom is an assembly of the human body and nonhumans creating the ability to engage with the field. This is intended to include and respect the messy tangle of what goes on in the field. The vocabulary of the Phantom, the authors argue, extends from fieldwork into analysis, demonstrating how researchers may employ embodied engagement in different parts of the research process. The authors exemplify this through fieldwork in a Danish slaughterhouse. Careful engagements connect the researcher and the field in multiple ways; thus, researchers may prolong their engagement in the field and produce knowledge informed by the messy entanglement of materiality, body, and affect during analysis. Butnaru (Chap. 17) studies exoskeletons, which are a class of robots that contribute to extending skills beyond the human body’s natural abilities. The author recounts her fieldwork in centres where exoskeletons are designed, seeking to understand how these technologies transform the realities of the bodies for which they are intended. During her fieldwork, she participated in the testing of an exoskeleton developed for persons with motor impairments. Data collected from her walking and breathing during the test was used to build the device’s algorithm. Drawing on this brief autoethnographic experience, the author suggests the term epistemological vulnerability as a specific form of care in practice in which the researcher-body is transformed into a scientific object with due regard to the research project in question. Chapter 18 by Friis and Whiteley explores the continuity of care ideals within participatory research when transitioning to a public exhibition setting. The study focuses on collective memory work involving ten female participants aged 22–62 who shared their gut-psyche connections through personal memories written in the third person. These memories were analysed to challenge notions of body and self. The authors aimed to create an encounter that encouraged visitors to engage with these experiences as a form of knowledge, rather than seeking authentic or autobiographical truth. The aim of the chapter is to experiment with care and engagement by

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inviting listeners to wonder what such experiences do and to consider what it means to listen to intimate experiences in a public space. Finally, Endaltseva and Jerak-Zuiderent (Chap. 19) ask what bodies do in careful engagement, exploring a particular modality which they call pausing. Drawing on their fieldwork within the Russian Multiple Sclerosis Society, the authors ask what it means to be “useful” within a patient organization. By focusing on moments of pausing, the authors explore how these instances can both enhance and undermine the engagement between researchers and the individuals they encounter during their research when seeking to be useful. This chapter adds to the existing research on engagement by not taking for granted two fundamental assumptions: the efforts exerted by bodies to engage (or not) with something or someone, and the resources required to sustain engaged research practices. To transform research into engaged research, the authors propose viewing being useful as a motile process of becoming and unbecoming, necessarily leading to transformations which require both care and taking pause.

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López-Gómez, D. (2020). What if ANT wouldnt pursue agnosticism but care? In A. Blok & C. Roberts (Eds.), The Routledge companion to actor-network theory. Routledge. Lynch, M. (2009). Science as a vacation: Deficits, surfeits, PUSS, and doing your own job. Organization (London, England), 16(1), 101–119. https://doi.org/10.1177/1350508408098924 Martin, A., Myers, N., & Viseu, A. (2015). The politics of care in technoscience. Social Studies of Science, 45(5), 625–641. https://doi.org/10.1177/0306312715602073 Mol, A., Moser, I., & Pols, J. (2010). Care in practice, on tinkering in clinics, homes and farms. Transcript Verlag. Murphy, M. (2015). Unsettling care: Troubling transnational itineraries of care in feminist health practices. Social Studies of Science, 45(5), 717–737. https://doi.org/10.1177/ 0306312715589136 Nicholls, E. J., Henry, J. V., & Dennis, F. (2021). Not in our name: Vexing Care in the Neoliberal University. Nordic Journal of Science and Technology Studies, 65–76. https://doi.org/10.5324/ njsts.v9i1.3549 Nickelsen, N. C. M. (2009). Rethinking interventionist research: Navigating oppositional networks in a Danish hospital. Journal of Research Practice, 5(2), 1–15. https://www.statsbiblioteket.dk/ au/#/search?query=recordID%3A%22sb_pure_ddfmxd%3Abf0a5cd8-cd21-400f-b184533001693310%22 Nowotny, H., Scott, P., & Gibbons, M. (2003). INTRODUCTION: ‘Mode 2’ revisited: The new production of knowledge. Minerva (London), 41(3), 179–194. https://doi.org/10.1023/ A:1025505528250 Pols, J. (2008). Which empirical research, whose ethics? Articulating ideals in long-term mental health care. In G. Widdershoven, J. McMillan, T. Hope, & L. Van der Scheer (Eds.), Empirical ethics in psychiatry (pp. 51–68). Oxford University Press. Pols, J. (2015). Towards an empirical ethics in care: Relations with technologies in health care. Medical Health Care and Philosophy, 18(81), 9–90. https://doi.org/10.1007/s11019-0149582-9 Pols, J., Pasveer, B., & Willems, D. (2017). The particularity of dignity: Relational engagement in care at the end of life. Medical Health Care and Philos., 21, 89–100. https://doi.org/10.1007/ s11019-017-9787-9 Puig de la Bellacasa, M. (2011). Matters of care in technoscience: Assembling neglected things. Social Studies of Science, 41(1), 85–106. https://doi.org/10.1177/0306312710380301 Puig de la Bellacasa, M. (2017). Matters of care: Speculative ethics in more than human worlds. University of Minnesota Press. https://doi.org/10.5749/j.ctt1mmfspt Ruppert, E., Law, J., & Savage, M. (2013). Reassembling social science methods: The challenge of digital devices. Theory, Culture & Society, 30(4), 22–46. https://doi.org/10.1177/ 0263276413484941 Scott, P., Richards, E., & Martin, B. (1990). Captives of controversy: The myth of the neutral social researcher in contemporary scientific controversies. Science, Technology, & Human Values, 15(4), 474–494. https://doi.org/10.1177/016224399001500406 Sismondo, S. (2010). An introduction to science and technology studies (2nd ed.). Wiley. Star, S. L. (1991). Power, technology and the phenomenology of conventions: On being allergic to onions. In J. Law (Ed.), A sociology of monsters. Essays on power, technology and domination (pp. 26–56). Routledge. Strathern, M. (2004). Partial connections (Updated ed.). AltaMiira Press. Tronto, J. C. (2013). Caring democracy: Markets, equality, and justice. New York University Press. https://doi.org/10.18574/9780814770450 Van de Ven, A. H. (2007). Engaged scholarship a guide for organizational and social research. Oxford University Press. Vikkelsø, S. (2007). Description as intervention: Engagement and resistance in actor-network analyses. Science as Culture: Unpacking ‘Intervention’ in Science and Technology Studies, 16(3), 297–309. https://doi.org/10.1080/09505430701568701

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Winance, M. (2010). Care and disability. Practices of experimenting, tinkering with, and arranging people and technical aids. In A. Mol, I. Moser, & J. Pols (Eds.), Care in practice. On tinkering in clinics, homes and farms (pp. 93–117). Transcript Verlag. Winance, M. (2019). ‘Don’t touch/push me!’ From disruption to intimacy in relations with one’s wheelchair: An analysis of relational modalities between persons and objects. The Sociological Review (Keele), 67(2), 428–443. https://doi.org/10.1177/0038026119830916 Zuiderent-Jerak, T. (2016). If intervention is method, what are we learning?: A commentary on Brian Martin’s “STS and researcher intervention strategies”. Engaging Science, Technology, and Society, 1(2), 73–82. https://doi.org/10.17351/ests2016.90 Zuiderent-Jerak, T., & Bruun Jensen, C. (2007). Editorial introduction: Unpacking ‘Intervention’ in science and technology studies. Science as Culture: Unpacking ‘Intervention’ in Science and Technology Studies, 16(3), 227–235. https://doi.org/10.1080/09505430701568552

Doris Lydahl is a senior lecturer at the University of Gothenburg, Department of Philosophy, Linguistics and Theory of Science, Sweden. Her research focuses on when healthcare policy meets practice and on everyday life and routine work as important locations where politics, science and technology meet and enact their normativities. She has published widely on care, methods and social studies of healthcare and medicine. Her current projects focus the values of digital technologies when introduced in eldercare, and the patient knowledge of long covid sufferers. Niels Christian Mossfeldt Nickelsen is a certified psychologist and professor of automated care, user involvement and learning at University of South-Eastern Norway (USN). He is also an associate professor at School of Education, Aarhus University (AU). His research centers on implications in healthcare of technological arrangements aiming to qualify professional work and patient care through standardization. He is interested in learning in relation to initiatives aiming to intensify patients’ involvement and responsibility, for example, care robots and self-monitoring. He finds inspiration in ethnographic methods, symbolic interactionism, ethnomethodology and science and technology studies (STS). He received research funding from EU Horizon; The Independent Research Fund Denmark (DFF); The Royal Danish Academy of Sciences and Letters; and The Joint Committee for Nordic Research Councils in the Humanities and Social Sciences (NOS-HS).

Part I

Crafting and Configuring Engagement

Chapter 2

Project Engagement Technologies and Their Role in Shaping Conditions for Engagement and Care in Participatory Design Projects Marie Ertner, Signe Yndigegn, Giacomo Poderi, Joanna Saad-Sulonen, and Helena Karasti

Introduction The aim of this chapter is to explore what we perceive as intimately entangled practices of participatory design (PD) projects and care. Care and design can be considered entangled in at least three ways. First, as the development and implementation of new technologies is foregrounded as a solution to current challenges in healthcare—labelled by some as a ‘crisis in care’ (Singleton & Mee, 2017)—the discipline of design plays an increasingly central role in envisioning and doing care in public and private institutions. Second, as an academic discipline, design research has been concerned with questions of care, such as through PD’s focus on users’ participation, representation, and empowerment (Kensing & Blomberg, 1998; Ertner et al. 2010), and, more recently, through academic exchanges between PD, STS, and feminist concepts of care (See e.g. Disalvo, 2022; Lindström & Ståhl, 2019; Rosińska & Szydłowska, 2019). Lastly, as we will show, design practices, as well as care, can be perceived as material, ethico-political, and affective doing (Puig de la Bellacasa, 2017). We focus on the materialities of PD projects that seek to engage users and stakeholders in careful ways through the crafting of material and technical means for conducting participatory workshops. Our exploration is broadly situated in the context of design ideation for technologies for health and senior care. We take a retrospective view (Saad-Sulonen et al., 2018) on an innovation and design project from 2009–2012 in which Signe (second author) participated during her doctoral

M. Ertner (✉) · S. Yndigegn · G. Poderi · J. Saad-Sulonen · H. Karasti IT University of Copenhagen (ITU), Copenhagen, Denmark e-mail: [email protected]; [email protected]; [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_2

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studies: the ‘SeniorInteraktion’ project1 (Brandt et al., 2012; Yndigegn, 2016). Signe acted as a project participant from a cross-disciplinary background, mixing ethnography, STS, and design interventions in different measures and ways. Our focus is on the practices of design, materiality, and moments of tension and difficulties in getting humans and material entities to engage with one another. Such difficulties may occur in participatory projects that gather an array of humans and non-humans around a vision of developing technologies and services that produce care through participatory engagements. We are interested in the enactments and distributions of agency among the participating human and non-human actors. We focus on how the material set-up of users’ engagement activities affords particular forms of care and excludes others. This interest is less concerned with specific political agendas of individual human stakeholders in the project, and more interested in the crafted nature of such activities, and how conditions for care and engagement emerge in material practice. As such, we approach PD as a matter of care by connecting situated design practices to conceptions of care in STS and feminist theory to explore how the crafting of participatory activities dis-/enable certain capacities for engagement and care. All five authors have deep professional, academic, and personal links to both participatory and collaborative design traditions, and to STS, and it is out of these interests and positions that our discussions of care and design relations have emerged. As our engagements with design are primarily through PD practices and scholarship, we start by situating these movements through a brief review of the literature and discuss how concerns with care can be said to infiltrate this design tradition in ways that are both similar and different from conceptions of care in STS. We then review recent feminist and STS debates on care to develop our analytical lens for seeing design as ‘a matter of care’, which we use to analyse the social and material practices of care at play in our empirical vignettes from two different design projects. In the analysis, we attend to design materialities as working artefacts, which are world-making artefacts that are performative of the realities they aim/claim to represent (Suchman et al., 2002). Such design materialities can be regarded as ‘neglected things’ (Puig de la Bellacasa, 2011), due to their absence in dominating narratives about the agencies of design (Ertner, 2015). They are often regarded as rather trivial entities in design practice, in so far as their role is merely perceived as instrumental for the design task at hand. We assess these seemingly innocent, neutral, and trivial design things, such as pipe cleaners, foam boards, and paper cards, as examples of materials that are often used in participatory projects. We engage analytically with such entities to explore their role in doing care.

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The project was funded by the Danish Business Authority’s program for user-driven innovation and included collaborations with public and private partners, as well as local communities of seniors in the capital region of Denmark.

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On Care and Design Relations Participation, understood as user engagement, is often an integrated part of both design research and service and product development, applied under a diversity of headlines, from PD, co-design and co-creation to cooperative design and design thinking (Smith et al., 2017). Here, we draw attention to the design tradition, which is often labelled the Scandinavian PD—a design movement that emerged in the late 60s to emphasise the political and ethical implications of the design and implementation of technologies (Clement & Van den Besselaar, 1993; Kensing & Blomberg, 1998; Kyng & Greenbaum, 1991). The movement leverages the indignation of workers, labour unions, and information system designers towards the development and introduction of new information technologies in Scandinavian workplaces that happened without considering workers and working practices’ needs (Simonsen & Robertson, 2013). Despite the early movement having grown and diversified considerably to include a heterogeneous, and sometimes conflicting, set of approaches, methods, toolboxes, and practices (Andersen et al., 2015; Halskov & Hansen, 2015), most PD affiliates would still agree that the ‘PD assemblage’ is centred around a core set of values and ideals that emphasise and strive for genuine participation, democracy, and empowerment of users and other stakeholders in processes of design (Simonsen & Robertson, 2013). As such, PD’s legacy is critical enquiry, deconstruction of power imbalances, and an emphasis on the political values of democracy and empowerment of marginalised groups that gained recognition in the design field, primarily in the USA and Europe (Kyng & Greenbaum, 1991). With growth, diversification, and recent contaminations from the global south, decolonial movements, and indigenous studies (Del Gaudio et al., 2020), PD scholarship has also increasingly problematised and reflected upon the implementation in practice of its core ideals. In fact, these often clash with the unsolvable tensions revealed by the diverging and conflicting stakeholders’ motivations and agendas (Pedersen, 2016; Poderi et al., 2020; Yndigegn, 2016), their power struggles, and interest politics (Ertner, 2015; Poderi et al., 2018). They can also end up being at odds with the intentions of ‘doing good’, for instance, by producing new types of invisibility, silence, or exclusion (Mörtberg & Studedahl, 2005; Pedersen, 2016; Pihkala & Karasti, 2016; Stuedahl & Finken, 2008; Yndigegn, 2016), or by articulating ‘the good’ through different and conflicting categories (Ertner et al., 2010). It is against this backdrop that, during the last decade, design researchers and practitioners have started investigating the meaning and materialities, as well as the possible ways of reconfiguring, participation, design, and their entanglements by engaging with the construct of care. For instance, some scholars have recently released the Lancaster Care Charter (Rodgers et al., 2019). The charter aims to align design and care by conceiving care as a means to approach that alignment work while acknowledging the limitations of design. Scholars in public design hold that “care is always the outcome of civic design—it is what publics, when given the

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chance to create together, seek to achieve” (Gordon & Mugar, 2020, p. 18). Others hold that care—particularly the labour of maintenance and of tending to relations— is always central to collective design practices of space making (Toombs et al., 2015). Furthermore, to some, care provides an orientation to designing together that prompts a focus on neglected things, such as issues of equity and collective action, and “aims to foster maintenance and repair for livable worlds” (Lindström & Ståhl, 2019, p. 1). Care in design is also a call to designers’ accountability: “But we see a role for participatory practitioners as custodians of care, creating spaces for others to reflect, make mistakes, learn and debate” (Light & Akama, 2014, p. 160). Lastly, in his latest work, Carl DiSalvo (2022) put forward a conception of citizens’ engagement in design experiments as a practice of care—a care of the possible—that materially unfolds along two specific orientations—inventive problem making and tinkering. Such care also allows for both the creation of interests and alliances towards public matters of concern and the pre-figuration of alternative futures that attempt to attend to such concerns. In her article Matters of care in technoscience—Assembling neglected things, Maria Puig de la Bellacasa describes care as “an affective state, a material vital doing, and an ethico-political obligation” (Puig de la Bellacasa, 2011, p. 90). She discusses the potential of viewing socio-technical assemblages as matters of care, rather than as matters of fact or matters of concern, as proposed by Latour (2012). This directs attention to the relational, affective, and material webs that sustain practices of care. A central point is exactly to avoid idealisations of care, but “keep close to the ambivalent terrains of care” (Puig de la Bellacasa, 2017, p. 5), and “use care as an analytic or provocation, more than a pre-determined set of affective practices” (Ibid, p. 7). Moreover, her notion of ‘matters of care’ brings together feminist scholarship on care with posthumanism, arguing that care is not only a relation between humans, but involves practical engagements with situated materials. This potential of viewing socio-technical assemblages as matters of care inspires our view of design as complex practices that interweave materiality, affects, and ethico-political values and doings. Seeing design as a matter of care involves attending to these different dimensions of care but also to emergent tensions between them. It is important to note, however, that seeing design in general, and PD in particular as a matter of care does not suggest that design practices are necessarily careful or always generative of care. As feminist research has shown, care (as well as design, which we add) is not to be conflated with positive feelings (Murphy, 2015) but is an affectively charged and selective mode of attention (Martin et al., 2015) with political implications. Depending on how caring through design practices is assembled and done, such practices can bring harm and hurt just as much as they can nurture and heal (Gill et al., 2017; Law, 2015; Singleton & Mee, 2017). As such, both design and care can be seen as political practices with opposing dynamics that distribute relations of power and generate categories of difference (Gill et al., 2017; Ertner, 2015). Cultivating sensitivity towards the contrasting and ethico-political implications of different practices and concepts of care allows care and design to be seen as having various effects (Ertner & Winthereik, 2022). Thus, a central aim of

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bringing together matters of care with PD practices is to attend to the tensions, ambivalences, and different versions of care emergent in situated material practices of design. A critical-analytical view of care in design can be found in an article on caring for robots by Benjamin Lipp (2022). Applying a radical relational view on care, the author circumvented the notion of robots as agents of care and instead asked how robots themselves exhibit specific needs for care in the design processes of testing and integration. Considering these processes of human-robot interfacing through the lens of care opened up to see the labour invested by human roboticists in caring for the robot and the test environment. With the notion of interfacing, Lipp (2022) sought to shift attention from interactions between humans and robots to the coordinative efforts of roboticists in making robots work at all. This highlights the role of the material and technical milieu as central actors in the design process, during which the conditions for care are ultimately reconfigured. In line with Lipp’s (2022) notion of interfacing, Ertner (2015) has shown how participation in design processes is a thoroughly material affair that requires the development and management of various types of ‘project communication technologies’. Project communication technologies are vital agents that hold an otherwise fragmented and heterogeneous assemblage together by creating continuous communication about and performance of ‘the project’ as a relationship between problems and solutions, embodied through relations between project practices, human actors (users, designers, and other stakeholders), and material entities such as prototypes (Ertner, 2015). Such project technologies are central entities in PD, but their agencies in framing conditions for design, participation, and knowledge production are often overlooked and rendered as merely instrumental. Drawing inspiration from Lipp’s (2022) notion of interfacing, feminist, and critical care research and Ertner’s (2015) notion of project technologies, this chapter focuses on the coordinative efforts distributed between technical, material and human actors involved in creating and managing material environments for engagement and care through PD processes. We develop the notion of ‘project engagement technologies’ and explore the ‘needs’ and affordances of such technologies and their role in mobilising action and performing engagement and care in the course of a project workshop.

Project Engagement Technologies: Pipe Cleaners, Paper Cards, and Different Forms of Care in a Design Workshop The following vignette is an excerpt from Signe’s field notes. It presents an episode from a collaborative design workshop in the project SeniorInteraktion, which was set up to include a mix of participatory and user-centred methods to develop innovative welfare technologies and services to cater for ‘the good life’ of senior citizens by supporting and enhancing socially and physically active lifestyles among this

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population. Care played a role in terms of the project’s aspirations to improve the lives and living conditions of seniors, and methodologically, it was invested in ideas and ideals of democratic design and participation through the frameworks of participatory and user-driven design. The vignette presents a situation, which is both particular and quite common. It is deeply situated, yet also recognisable to all authors, as an example of the type of friction and difficulty, which often lurk under the surface in participatory and user-driven innovation projects. Such projects often have, as their goal, to design new digital technologies and services in design projects aiming towards engaging an array of differently positioned humans and non-humans in careful ways. The workshop was organised by a core group of design researchers, also partners in the project, who planned and coordinated the collaborative workshops. Much time and effort had gone into planning and crafting the workshop, in which Signe had also taken part. The situation narrated in the vignette below takes place in a large meeting room in a local community building in Copenhagen, where the workshop was situated. The workshop hosted more than 40 people: project partners and older users, who were divided into sub-groups working together around their tables with one person each as a facilitator. Signe facilitated a table of four other people: the two intended older users, Ulla and Anne; Peter, who represented a service company; and Malene, who worked in the municipality’s health and care department. From pictures and Signe’s field notes, we know that the table was set with wooden dolls, foam boards formed as backdrops with three stages, different textiles, yarn, pens, coloured papers, pipe cleaners, and cotton wool, as well as pictures from field visits at elderly homes, activity centres, and outside areas. The materials were selected and crafted by the design team to work as props for the workshop exercise, inviting the participants to engage creatively and imaginatively. The aim and end goal of the exercise was to use those materials to develop doll scenarios to enact concrete visions of ‘a good, shared experience’ for older people. By the end of the day, each group should present their video-recorded enactments of doll scenarios in plenum, which would then become deliverable for the next phase of the project (Figs. 2.1 and 2.2). “I don’t like to go to Fisketorvet! [a shopping mall in Copenhagen]” Ulla exclaims. I (Signe) look at the card I have just been reading to the others. The little white paper cards, which in design lingo are called ‘what-if cards’, have been crafted by the project design team in preparation for the workshop. This particular card was inspired by the company Fisketorvet, who is a partner in the project. The card has the text, “What if you could go to Fisketorvet with a group of other people and do whatever you wanted?” The workshop participant, Ulla, made it clear that she had no interest in joining a trip like that. She has told us earlier that she likes to spend time at home, to talk to her neighbours or friends on the phone, or to go to the theatre with her best friend. I look at the table and take a new what-if card: “What if it is easy to get in contact with others who are out exercising? Or what if there are exercises in the park and a house with props to borrow?” I read. “No, that is not for me!” Ulla replies, and Anne agrees. After a while, I feel a growing frustration with the two women, who are dismissing all the what-if prompts. I am worried that we will not be able to move forward to actually start producing the doll scenario

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Fig. 2.1 Pictures of design materials from the collaborative workshop in project SeniorInteraktion. Source:Signe Louise Yndigegn

Fig. 2.2 Pictures of design materials from the collaborative workshop in project SeniorInteraktion. Source:Signe Louise Yndigegn

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This episode showcases the difficulties and tensions that are often at play in attempts to engage users in design processes. Signe’s role in the project is comparable to Jensen’s term of intervention-as-composition (Jensen, 2012), in which STS researchers are invited as mediators between previously unconnected actors, a position that is both privileged and difficult, according to Jensen. Privileged because it grants access and possibilities to intervene, and difficult because the researcher may experience that established categories from his/her academic background, such as the user, can transpire into whole new, and sometimes unrecognisable and even undesired forms. In the configuration of the middle management position that Signe held, the role comprised mixing and alternating between different dispositions and responsibilities, such as being ethnographer, workshop facilitator, participant, and designer, all at once. In the vignette, Signe navigates the uncanny role as mediator between intended senior users, project engagement technologies, and other project partners (here the partner of Fisketorvet, who is interested in attracting older people and offering their space in the mall for activities), trying to hold all these entities together despite the obvious frictions that emerge around the what-if cards. More than mediating between human actors, Signe must mediate between the human and material participants in order for the workshop to go on towards the intended aim.

Frictions Between Project Engagement Technologies (PET) and Intended Users: Care for Collective Activity or the Quality of Specific Relations In design parlour, what-if cards are used as a technique to create a “verfremdungs effect” (alienation) and evoke new ideas and new possibilities for the future (Halse et al., 2010). As such, they are meant to trigger a mindset open to imagining certain things or practices differently, and thus open up new design spaces (Yndigegn, 2016). In this workshop situation, it becomes clear that they are not neutral triggers but express their own version of what care for older citizens entails. The first what-if card enacts care as activating collectives of seniors around the purpose of consumption. The gist of this card is the idea that ‘a good day’ can be a group trip to the shopping mall, Fisketorvet. The card suggests that the ‘good’ is to be socially active with a group of other seniors. Being socially active here means participating in collective activities with other older citizens or creating larger networks with people, where the character of the social relation or the activity is less important. The second what-if card expresses a similar idea of ‘putting people in contact with others’—but this time around the purpose of exercising. The central idea and ideal here is seniors who engage in body work and healthy activities, such as

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exercising, while using the occasion for social activity and growing their social networks. The visions presented by the what-if cards are clearly aligned with contemporary trends in ageing policies of ‘active ageing’, turning on ideals of selfsufficiency, autonomy, and self-care (Ertner & Winthereik, 2022). The what-if cards do political work, and in relation to their framing of ‘a good day’, the other materials—pipe-cleaners and foamboards—become means for expressing and enacting those visions of active ageing and self-care. In this specific context, the other materials become coupled with those visions. They lie on the table, expecting one of the what-if cards to be translated into pipe-cleaners, foamboards, flamingo dolls, etc., working together to perform a collective vision (Yndigegn, 2016). The participants, Anne and Ulla express different versions of care through their emphasis on homebound activities or cultural experiences that involved none or solely one special friend that they care for. Care emerges as a quality of the particular relationship between Ulla and her friend. Care for the social self does not emerge from being brought together with a vast number of other older people. For Ulla and Anne, activation is not an end in itself. Whereas the what-if cards seem to value social networking and group activities for the sake of social activation, Ulla and Anna value the quality of a particular and cherished friendship that has grown and cultivated over time and is based on shared interests. They value cultural and aesthetic experiences that do not serve so-called ‘activating’ means, but care for the immediate sensory and aesthetic pleasure of going to the theatre or museum. The body here plays a role as a sensory organ that listens, sees, and enjoys—not a biomedical object, a body in decay, which must be restored or rehabilitated through exercises and physical bodywork, which one of the what-if cards indicates. Thus, the what-if cards, in alliance with the other materials on the table, do more than what is proposed by the modest notions of ‘inviting’, ‘triggering’, or ‘prompting’ the human participants to articulate their own view of ‘a good day’. They enact concrete concepts of care, with very specific political underpinnings. Engaging with the foamboards and pipe-cleaners to follow the script of the workshop requires acceptance of one of the what-if cards, and thus concurring with the specific conceptions of care as social and physical activation.

Disjointed Accountabilities: Caring for Project Progress or Users’ Resistance to Engaging with Materials? Signe’s self-reported frustration during the workshop exercise stems from her role as mediator between the project and the two participants, Ulla and Anne. The clash between different versions of care and valuation of ‘the good’ at stake presents a dilemma in terms of her joint accountability towards the project, and the two particular intended users. She finds herself being pushed and pulled in different directions—the materials on the table that need to be creatively assembled demand a suitable what-if scenario, but the human participants refuse to behave as ‘proper

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participants’ who should be triggered by the materials and their inbuilt care scripts. Given that the material entities seem to work together to perform one version, whereas the human participants do another, how can the participants in this situation find ways of going on together with the exercise when there are opposite versions of care at play? What counts today for the exercise to be regarded as ‘successful’ is the ability to live up to the end goal, namely that ideas for ‘a good, shared experience’ are materialised and rendered as doll-scenarios able to travel into the next phases of the project. In this respect, it is vital that workshop participants pick up foam boards and pipe cleaners and start creating dolls and stages to enact a scenario. Before entering the design exercise, the foamboards and pipe-cleaners, along with the other materials, may be just that: foamboards and pipe-cleaners. Upon entering the design exercise, they fall into relations with other things and processes, such as what-if cards, design programmes and agendas, design facilitators, and project stakeholders. In this context, they become invested in certain meanings that go beyond purely instrumental working. They become workable in relation to specific political logics of care for the older people, and not immediately flexible to the forms of care and valuation of good experiences, articulated by the human participants Ulla and Anna, who abstain from taking up the materials and build doll scenarios. Making the material entities work as design materials is tied to the performance of this particular notion of care and valuation, which has already been circulated and inscribed into the material and technical conditions of the exercise. Care, then, is not just a matter of concern in relation to the design of a scenario; it is also a tension expressed through the role of the facilitator, where the call to care for the progress of the exercise and the project conflict with the call to care for the intended users’ conceptions of ‘a good day’. The fact that there may be, and often are, tensions and direct conflicts between different stakeholders influenced by the design of new technologies has been described in detail by PD research and is recognised as a profound political and democratic issue and challenge of design (see e.g. Yndigegn, 2016). Somehow, despite the obvious tensions at the table and emerging out of the exercise, the political nature of the topic is completely downplayed, and never addressed as, in fact, political issues. Something about the playful and mundane nature of the material set-up takes the focus away from politics and towards the practicality of the exercise. The colourful paper, glossy foamboards, and everyday items such as pipe cleaners, glue-sticks, and pens have an innocence, a lightness, and humble mundanity to them. With their triviality and childlike innocence, they seem to gloss over the highly political and ethical issues at stake. Beyond enacting specific, political concepts of care, and excluding others, the material set-up of the workshop creates a disjuncture between progressing with the exercise and project agenda on the one hand; on the other hand, to take the resistance of the two workshop participants seriously, which means that the exercise and the basic ideas of the project need to be fundamentally re-invented or dodged. Moreover, the playful and innocent characteristics of the design materials work to obscure the fact that what is happening is in fact political and ethical activities, and that the

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participants’ engagement is from the start restricted by the PET, which sets boundaries on how care can be imagined and designed.

Concluding Discussion: Project Engagement Technologies as an Analytic Tool to Unsettle ‘Careful Engagements’ in Design Projects Our focus in this chapter has been to track the role of design materials in configuring care and engagement in a PD workshop. We call these design materials project engagement technologies to bring into view their role as technical entities and techniques that provide the infrastructure for engaging users and stakeholders in design projects. We use the term PET to designate the technical and material resources that make engagement in participatory projects possible. By introducing the notion of PET, we follow Puig de la Bellacasa’s (2011, 2017) emphasis on care as material and ethico-political doing, and recent calls in both STS and design research for non-anthropocentrism (Puig de la Bellacasa, 2017; Rosińska & Szydłowska, 2019). Here, we propose PETs as ‘neglected things’, as their agency in doing engagement and care in participatory project practices is rarely recognised. PETs play a vital role in shaping conditions for care in participatory processes and projects. Specifically, our analyses showed how the what-if cards in relation with other materialities such as foam boards and pipe-cleaners used in the project workshop proposed certain versions of care and excluded others. For instance, the enactment of care as social activation by the what-if cards concretely excluded the participant Ulla’s articulation of care as something residing in the specific quality of a long-lasting friendship. The analysis also showed that care in such projects and processes is not only a matter of caring for the users’ needs and desires but also of caring for the progress of the project. These two versions of care may not always be aligned and may put the researcher/facilitator in a difficult dilemma regarding what to care for. Both care and engagement are central topics in STS and PD research. Here, we seek to engage with these discussions by being reminded that attempts at doing ‘careful engagement’ always require material and technical set-ups of some sort. To make our point, we refer to one (among many) well-established science studies in STS research that emphasises the agency of situated material practices in the development of scientific facts. Sociologists Fujimura and Clarke (1992) famously proposed a view of science as ‘crafted’. They understand science as practices of co-constituting ‘tools’, ‘jobs’, and ‘rightness’. Scientific facts are not discovered but crafted, since what counts as ‘the job’, ‘the tool’, and the ‘rightness’ of the tool for the job are mutually constructed in situated, socio-material practices. We propose a similar view on care and engagement in participatory projects as ‘crafted’ in the sense that what counts as care (the ‘rightness’) is co-constructed in relation to PET (the ‘tools’ for engagement) and the ‘job’ (the overall project agenda and goal). In the design field, materiality is also omnipresent, including in various co-design

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situations where possible futures are explored (Eriksen, 2009). There, as Eriksen (2009, p. 2) noted, the “interplay between the explicitly chosen specific framings [of focus], formats [of explorations] and design materials” help set the stage for collaboration. Returning to the work by Lipp (2022), the author assessed the role of the test environment in the process of developing care robots. What is interesting in his analysis is the way in which materiality acts; trivial entities of the test environment, such as carpets, electric connections, etc., influence the robot’s ability to work according to the intention of being an ‘agent of care’. Care in these processes, the author argued, is less a matter of caring for (older) people; in fact, it is mainly about caring for the robot and the material environment into which it is integrated. This makes him articulate robots as objects of care rather than as agents of care. Seeing the labour of roboticists of managing these ‘trivial entities’ of the test environments, and the robot is interesting to us. This resonates with the work of the designers in our empirical material on managing the material entities and procedures of the workshop. A lot of care is put into making and preparing the what-if cards, foamboards, finding, printing and cutting images of older people, etc. These entities are crafted and arranged with a lot of care. As they are made to work in relation to other material and human participants in design processes, they come to enact care in particular ways, but they are also themselves objects of care. Caring for the crafting, preparation, and presentation of material and technical elements of design—PET—are central aspects of care in design practices. However, it is not mere practicality but a thoroughly ontological and ethico-political doing that influences how care, engagement, users, and other ‘things’ can be imagined. Until now, we have mainly treated care and engagement separately for analytical purposes. However, we must address the question of what understandings of ‘careful engagement’ our focus on PET has brought about. First, we found that ‘careful engagement’ was expressed conceptually and in practice in the project through the aspiration to ‘engage with care’ with the intended users following political and moral protocols of participatory, democratic, and user-centred approaches to design and users’ engagement. As such, PETs are expressed and used as agents of ‘careful engagement’, as they are developed with the purpose of engaging users in careful ways. The delicately planned set-up of the workshop hints at another configuration of careful engagement, which has to do with the relationship between project designers and PETs. What the vignette shows, although indirectly, are all the preparatory practices of crafting PETs for engaging with users. This work of crafting the conditions for engagement and care is indeed a central dimension of doing careful engagement in practice in participatory projects. Moreover, the project aimed to ‘care through engagement’, as the goal of the participatory activities was to improve care for older citizens by engaging them as users in design processes. Care and engagement thus figured in the project as both means and ends. Another configuration of careful engagement worth mentioning touches upon the role of the STS researcher/Designer. This has to do with Signe’s stress and concern for the ‘proper’ development of careful engagement with users. The vignette brings attention to careful engagement as a material doing but also as a subjective and

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affective state of the STS/Designer/practitioner in action, worrying both about how to engage the participants in careful ways, as well as how to ‘care for the project’ by bringing the PETs to use in securing progression. Focusing on the role of PET’s in design projects need not involve detached and disembodied analyses. On the contrary, attending to one’s own embodied experiences of tensions, as Signe does, in relation to making material and human actors ‘engage’ may alert the researcher to the different and potentially conflicting care responsibilities embedded in their role. An important point is that by foregrounding the agency of material actors, we do not intend to neglect the engaged, affective, embodied involvement of human actors, or our responsibilities in design processes. As Suchman (2007, in Puig de la Bellacasa, 2017) reminded us, the price of recognising the agency of artefacts need not be the denial of our own. Rather, we see the attention to materiality as part of accountable and responsible design practice, directing attention towards those entities that are often seen as innocent, mere instrumental and trivial, and thus neglected as participants in generating care. With the notion of PET and the way in which conditions for care and engagement tend to be both enabled and restrained by these material infrastructures, our aim is to ‘unsettle’ the ways in which the design of new technologies and services is often articulated as solutions to certain problems and thus as care. We have shown that even in some of the most sensitive and inclusive design practices, as we perceive the participatory design to be, seemingly innocent design materials restrict the capacity for doing care. When put to work in the social and material arrangements of design in practice, such design materials work as PET that enable specific versions of care and exclude others. Based on this, we propose the notion of PET as an empirical-ethnographic resource to critically examine exclusions enacted at the material and human interfaces of design, which produce limits on possibilities for care in projects that aim and claim to do ‘careful engagement’.

References Andersen, L. B., Danholt, P., Halskov, K., Hansen, N. B., & Lauritsen, P. (2015). Participation as a matter of concern in participatory design. 11(3–4), 250–261. https://doi.org/10.1080/15710882. 2015.1081246 Brandt, E., Mortensen, P. F., Malmborg, L., Binder, T., & Sokoloer, T. (2012). SeniorInteraktion: Innovation gennem dialog. In E. Brandt, P. F. Mortensen, L. Malmborg, T. Binder, & T. Sokoloer (Eds.), Uniwersytet śląski (Vol. 7, Issue 1). Det Kongelige Danske Kunstakademis Skoler for Arkitektur, Design og Konservering. https://doi.org/10.2/JQUERY.MIN.JS Clement, A., & Van den Besselaar, P. (1993). A retrospective look at PD projects. Communications of the ACM, 36(6), 29–37. https://doi.org/10.1145/153571.163264 Del Gaudio, C., Parra-Agudelo, L., Clarke, R., Saad-Sulonen, J., Botero, A., Londoño, F. C., & Escandón, P. (2020). Introduction: PDC2020 - participation(s) otherwise - Vol 1. PDC ‘20: Proceedings of the 16th participatory design conference 2020: Participation(s) otherwise, Vol. 1, VI–IX. Disalvo, C. (2022). Design as democratic inquiry: Putting experimental civics into practice: (C. DiSalvo, Ed.). MIT Press.

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Eriksen, M. A. (2009). Engaging design materials, formats and framings in specific, situated co-designing – A micro-material perspective. Nordes, 0(3). Ertner, M., Kragelund, A. M., & Malmborg, L. (2010). Five enunciations of empowerment in participatory design. In Proceedings of the 11th biennial participatory design conference (p. 191). Ertner, M., & Winthereik, B. R. (2022). Policy concepts and their shadows. Science & Technology Studies. Ertner, S. M. (2015). Infrastructuring design : an ethnographic study of welfare technologies and design in a public-private and user driven innovation project. PhD Thesis, IT University of Copenhagen, software and systems section. Fujimura, J., & Clarke, A. (1992). The right tools for the job: At work in twentieth-century life sciences. Princeton University Press. Gill, N., Singleton, V., & Waterton, C. (2017). The politics of policy practices. The Sociological Review, 65(2_suppl), 3–19. Gordon, E., & Mugar, G. (2020). Meaningful inefficiencies. Halse, J., Brandt, E., Clark, B., & Binder, T. (2010). Rehearsing the future. In J. Halse, E. Brandt, B. Clark, & T. Binder (Eds.), The Danish Design School Press. Halskov, K., & Hansen, N. B. (2015). The diversity of participatory design research practice at PDC 2002–2012. International Journal of Human-Computer Studies, 74, 81–92. Jensen, T. E. (2012). Intervention by Invitation: New concerns and new versions of the user in STS, 25(1), 13–36. Kensing, F., & Blomberg, J. (1998). Participatory design: Issues and concerns. Computer Supported Cooperative Work (CSCW), 7(3), 167–185. Kyng, M., & Greenbaum, J. (1991). Cooperative design: Bringing together the practices of users and designers (pp. 405–416). Information Systems Research. Latour, B. (2012). Why has critique run out of steam? From Matters of Fact to Matters of Concern, 30(2), 225–248. Law, J. (2015). Care and killing tensions in veterinary practice. In A. Mol, I. Moser, & J. Pols (Eds.), Care in practice: On tinkering in clinics, homes and farms (pp. 57–72). Transcript Verlag. Light, A., & Akama, Y. (2014). Structuring future social relations (pp. 151–160). Lindström, K., & Ståhl, Å. (2019). Caring design experiments in the aftermath. Nordes Conference Series, 1. Lipp, B. (2022). Caring for robots: How care comes to matter in human-machine interfacing. Social Studies of Science. Martin, A., Myers, N., & Viseu, A. (2015). The politics of care in technoscience. Social Studies of Science, 45(5), 625–641. Mörtberg, C., & Studedahl, D. (2005). Silences and sensibilities: Increasing participation in IT design. In Critical computing - between sense and sensibility - proceedings of the 4th decennial Aarhus conference (pp. 141–144). Murphy, M. (2015). Unsettling care: Troubling transnational itineraries of care in feminist health practices. Social Studies of Science, 45(5), 717–737. Pedersen, J. (2016). War and peace in codesign. CoDesign, 12(3), 171–184. Pihkala, S., & Karasti, H. (2016). Reflexive engagement - Enacting reflexivity in design and for “participation in plural.” ACM international conference proceeding series, 1, 21–30. Poderi, G., Bettega, M., Capaccioli, A., & D’Andrea, V. (2018). Disentangling participation through time and interaction spaces–the case of IT design for energy demand management. CoDesign, 14(1), 45–59. Poderi, G., Hasselqvist, H., Capaccioli, A., Bogdan, C., & D’Andrea, V. (2020). Matters of concerns and user stories: Ontological and methodological considerations for collaborative design processes. CoDesign, 16(3), 220–232. Puig de la Bellacasa, M. (2011). Matters of care in technoscience: Assembling neglected things. Social Studies of Science, 41(1), 85–106.

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Puig de la Bellacasa, M. (2017). Matters of care: Speculative ethics in more than human worlds (Vol. 41). University of Minnesota Press. Rodgers, P., Innella, G., Bremner, C., & Coxon, I. (2019). The Lancaster care charter. Design Issues, 35(1), 73–77. Rosińska, M., & Szydłowska, A. (2019). Zoepolis: Non-anthropocentric design as an experiment in multi-species care. Nordes, 0(8). Saad-Sulonen, J., Eriksson, E., Halskov, K., Karasti, H., & Vines, J. (2018). Unfolding participation over time: Temporal lenses in participatory design. CoDesign, 14(1), 4–16. Simonsen, J., & Robertson, T. (2013). Routledge international handbook of participatory design (hardback). Routledge. Singleton, V., & Mee, S. (2017). Critical compassion: Affect, discretion and policy–care relations. The Sociological Review, 65(2_suppl), 130–149. Smith, R. C., Bossen, C., & Kanstrup, A. M. (2017). Participatory design in an era of participation. CoDesign, 13(2), 65–69. Stuedahl, D., & Finken, S. (2008). Silence’ as an analytical category for PD. In PDC (pp. 170–173). Suchman, L. (2007). Human-machine reconfigurations: Plans and situated actions. Cambridge University Press. Suchman, L., Trigg, R., & Blomberg, J. (2002). Working artefacts: Ethnomethods of the prototype. The British Journal of Sociology, 53(2), 163–179. Toombs, A. L., Bardzell, S., & Bardzell, J. (2015). The proper care and feeding of hackerspaces: Care ethics and cultures of making. Conference on human factors in computing systems proceedings (pp. 629–638). Yndigegn, S. L. (2016). Managing resistance and negotiating co-design - Reflections on troublesome and elusive moments. IT University of Copenhagen.

Marie Ertner (PhD) is an Associate Professor at the IT University of Copenhagen. Her research focuses on the socio-material and ethical implications of the development and implementation of digital technologies for older people, particularly smart home technologies and digital technologies for care and welfare. Her interest is on the interrelated practices and imaginaries of digital welfare innovation, ageing and care. With an interdisciplinary background in Digital Design and Science & Technology Studies, her research combines and develops ethnographic, design and arts-based methods for inquiry. Signe Yndigegn (PhD) is an Associate Professor at the IT University of Copenhagen. Her research is placed in the intersection of Ethnography, Participatory Design—and Science and Technology Studies. It focuses on design and use of digital technology in different constellations of older people, public institutions, and welfare technologies especially within questions of active ageing, loneliness and digitalization processes. She has taken part in and led several research projects on care, aging and social innovation. Giacomo Poderi (PhD Sociology and Social Research) is an assistant professor at the IT University of Copenhagen. He is a transdisciplinary scholar with more than 10 years of experience at international level around the topic of participation in the context of grassroots and community driven design and innovation. In particular, he critically explores the political, material, affective, and labor dimensions of care and commoning practices in digital, urban, and environmental settings. His work unfolds through intervention-oriented research, and interpretive qualitative inquiry and sits at the intersection of Participatory Design (PD), Science & Technology Studies (STS), and their cognate fields of Human-Computer Interaction (HCI) and Computer-Supported Cooperative Work (CSCW).

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Joanna Saad-Sulonen, Doctor of Arts in New Media and Digital Design, is an associate professor at the IT University of Copenhagen. Her research interest lies at the intersection of design, digitalization, and participation. Joanna studies the way people self organize around topics of interest, how they use and tinker with information technologies and digital services for that purpose, and what type of design work is at hand in such configurations. Helena Karasti is an interdisciplinary scholar who has held academic positions in Finland, USA, Sweden, Denmark and Germany. She has a long-term interest in exploring relations between participatory design, ethnography, feminist theorizing, and science and technology studies. Her initial studies of situated collaborative practices of technology use and design have grown into exploring ‘infrastructuring’, i.e. how situated activities form and are formed by larger infrastructures over more extended temporalities. Throughout her career Helena has been particularly intrigued by the politics of participation, engagement, and care in the complex and often contested settings of transforming technologies.

Chapter 3

Mapping Careful Engagement: From Reflexivity to Response-Ability Suvi Pihkala and Helena Karasti

Introduction Care has been a recurring theme in the field of Science and Technology Studies (STS). Scholars have attended to its indispensability and importance, ambivalence and troubles (Lindén & Lydahl, 2021; Martin et al., 2015; Puig de la Bellacasa, 2017). In these discussions, care has been a theoretical sensibility and something to be traced and mapped in its more or less familiar forms in the worlds investigated. Care has been sought and found in peculiar and sometimes neglected places and spaces and as enacted in more than human worlds (Puig de la Bellacasa, 2015, 2017). By exploring the logics of care in its multiplicity, its usual and taken-for-granted forms and realms have been complicated (Mol, 2008) and its innocence and pureness generatively troubled (Murphy, 2015). The potential and limits of care have become relevant for STS, as scholars in the field are increasingly being called upon to become engaged. This brings about a renewed reason to consider care’s multiple locations, manifestations and materialisations in engaged STS research and also gives the possibility to explore alternative ontological starting points for those considerations. With this challenge and possibility in mind, this paper holds to the importance of care in STS by locating, exploring and unpacking its registers in researchers when striving to engage well—that is, responsibly and accountably in their engagements with the worlds of their enquiry. Traditionally, reflexivity has been used as a tool and an orientation to this responsibility and accountability. It has prompted researchers to critically scrutinise questions of power, positionality and values underpinning their S. Pihkala (✉) University of Oulu, Oulu, Finland e-mail: suvi.pihkala@oulu.fi H. Karasti Oulu, Finland © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_3

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work (Hesse-Biber & Piatelli, 2012; Phillips et al., 2013; Soedirgo & Glas, 2020). In research, reflexivity has worked as a multimodal feature that emanates from self-awareness and sensitivity (Rodríguez-Dorans, 2018). At the same time, reflexivity has itself been under scrutiny (Ashmore, 2015; Lynch, 2000; Pillow, 2003). This has pushed scholars to discuss how reflexivity is enacted in performing research, how it adds to the socio-material practices of enquiry and how it animates the processes of engagement. In recent years, a growing appreciation of entanglements, socio-material relationality and processuality emerging from the ‘ontological turn’ (Coole & Frost, 2010; Dolphijn & van der Tuin, 2012) has brought about new ways of thinking about responsible and accountable agency. Instead of the metaphor of reflection and reflexivity, approaches gathered under the rubric of new materialisms have allowed scholars to approach ethics, responsibility, accountability and care beyond human intention as an ontological ethical relationality—a matter of response-ability in and as part of the world (Barad, 2007; Haraway, 2016). This provides a generative approach to exploring both care and engagement from a foundationally distinct starting point. In this chapter, we take this thinking of response-ability as our starting point to move beyond reflexivity as a tool for responsible and accountable engagement and, by so doing, add to the conceptualisation of careful engagement. Our approach to accomplishing this follows the contention that new materialisms are not abstract visions but material engagements (Dolphijn & van der Tuin, 2012). Thus, we draw on our practice-based research collaboration, which started around 10 years ago and has continued to bring us into diverse transdisciplinary discussions over the years. More specifically, we pause to consider a case study that we carried out with, for and by a group of professionals working around workplace harassment interventions. Here, our overall aim was to design a social media–supported collaboration model and a network to support learning and cooperation between different stakeholders and through this advance prevention and interventions on harassment and inappropriate behaviour at workplaces (see e.g. Pihkala & Karasti, 2016). During the process, we worked closely with stakeholders in designing the collaboration model. Being a collaboration of about a year and a half, this process caught us contemplating responsibility and care in our ways of engaging with the process with its plural participations (Pihkala & Karasti, 2013, 2016) and the ‘matter of concern’ at its core as it emerged for us within and through the process (Pihkala & Karasti, 2018). In particular, the unfolding nature of the process and our ways of engaging with/in it with care drew our attention and held us in its grip. In this chapter, we return to and continue these contemplations by reading them through the lens of response-ability. The chapter is structured as follows. We start with an elaboration of new materialist ethico-onto-epistemology (Barad, 2007) and unpack the notion of response-ability for the reader. We then introduce our case and the ways it prompted us to consider and conceptualise our careful, responsible and accountable orientation, introducing the notion of ‘reflexive engagement’ (Pihkala & Karasti, 2013, 2016). After that, we return to the case and our reflexive approach and consider the carefulness of our engagement through the lens of response-ability. Informed by

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response-ability, we focus on three layers or folds of engagement that come together in our praxis: careful attentiveness in the minutia of the process, responsiveness in making cuts and accountabilities beyond our encounters. We believe that these layers help us map a move away from reflexive sensibility to a kind of more-than (self)-reflexive careful attentiveness and curiosity that is premised on using our ability to respond in our engagements so as to enable the response of the other (Barad, 2007; Haraway, 2016). Response-ability, we maintain, allows us to develop an understanding of careful engagement that starts with our situatedness with/in the world and invites us to ‘stay with the trouble’ (Haraway, 2016) of those situated practices in order to feed into social justice and co-flourishing.

From Reflexity to the Care-Full Lens of Response-Ability In STS and social science research more widely, reflexivity has held a place as a central concern (Ashmore, 2015), an ethical and methodological virtue (Steen, 2013) and ‘something to be practised daily’ (Felt et al., 2017, p. 22). It has provided a way to position the researcher in relation to the social context of the study and to the power and differences embedded in research encounters with people and communities (Arias López et al., 2021; Holland et al., 2010). Reflexivity has informed planning and anticipation of engagement and has occurred in ‘ethically important moments’ (Guillemin & Gillam, 2004) as a navigational tool for ethical praxis in diverse stages of research, from researchers’ self-scrutiny to representation (HesseBiber & Piatelli, 2012). At the same time, reflexivity has also been criticised for becoming overtly vague (Lynch, 2000). This has encouraged scholars to scrutinise the actual use of reflexivity, prompting discussion on ‘reflexive methodology’ (Alvesson & Sköldberg, 2009), ‘active reflexivity’ (Soedirgo & Glas, 2020) or ‘reflexive engagement’ (Pihkala & Karasti, 2013, 2016). In these discussions, the reflexively aware researcher emerges as the locus of ethical agency. With roots in representational thinking—that is, one that presumes a knowing subject distinct from the world of which it knows (see e.g. Barla, 2021; Davies, 2018)—reflexivity presupposes a researcher who, by looking from far enough a distance, can gain a more objective view of the world. At the same time, by close scrutiny, our positionality in the world and its effects upon the knowledge produced would be revealed. In a way, this could be argued to produce carefulness as a praxis that is about ‘treading carefully’—without disturbing the universe (Barad, 2007)—but at the same time leaves researchers detached from the multiple and sometimes also troubling effects of what they/we are doing and what those doings do—that is, the materialising effect of their/our practices. With the shift towards posthuman and new materialist relational ontologies (Coole & Frost, 2010; Dolphijn & van der Tuin, 2012) witnessed in social sciences over the past few decades, the human-centredness and separation of subject and object and of knower and the known that underpin reflexivity have become troubled and rethought with attention to socio-material entanglements and distributed/decentred agency, in which there is

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no outside or inside but ‘intra-acting from within and as part of the world in its becoming’ (Barad, 2007, p. 369). To slow down, building upon the important acknowledgement of situated knowledges already deep seated in feminist thinking (Haraway, 1988; see van der Tuin, 2016), feminist philosopher and physicist Karen Barad (2007) developed a relational ontology of ‘agential realism’ according to which knowing and being are co-constitutive of one another. According to agential realism, no entity pre-exists its relatings but rather comes to matter in the ‘intra-action’ of mutually entangled entities in which the neologism replaces the more common notion of interaction. With the lack of pre-existing individual bodies, the nature of existence is an entanglement—‘not an individual affair’ but a dynamism of forces within which things, issues, individuals and phenomena ‘emerge through and as part of their entangled intra-relating’ (Barad, 2007, p. ix). This thinking that suggests the inseparability of knowing and being/matter and meaning combines ontology and epistemology into an onto-epistemology, which is also, inseparably, a matter of ethics: ‘ethico-onto-epistemology’ (Barad, 2007): When we understand matter and meaning to co-constitute one another—or come to matter in and as part of intra-active entanglements—ethics is not a matter of choosing or human intention but relationality shot through the very marrow of being. Translating this to care, Maria Puig de la Bellacasa (2017) reminds us that the question is not so much about whether we care as it is about how we care because the ethical relationality is always already there. For capturing and working with what this intra-relationality and ‘ethics at the marrow of being’ (Barad, 2007, p. 396) means in practice, Haraway (2016) and Barad (2007, 2014), respectively, have discussed the notion of ‘response-ability’. With response-ability, the researcher ‘I’ is no longer the ‘reflexively aware researcher’ (Davies, 2018) but an embodied/embedded sensibility (Barad, 2007) with the ethical injunction to be responsive and enable the response of the other (Barad, 2012, p. 81; Haraway, 2016, p. 7; also Stengers, 2004). Inspired by this notion, scholarship has emerged in social sciences (Bozalek, 2020; Pihkala & Huuki, 2019; Strom et al., 2019) and STS (e.g. Atkinson-Graham et al., 2015; Friis, 2021; Gluzman, 2021) that has in different ways and to varying degrees begun to experiment with response-ability as an ethical praxis to engage otherwise—in ways that disrupt indifference—within and as part of the world. These scholarly endeavours have evoked response-ability as a mode of openness and attentive becoming-with (Bozalek, 2020; Davies, 2018; Pihkala & Huuki, 2019; Renold & Ivinson, 2022) in the microprocesses of practice. For others, it has prompted care and responsibility in relation to ‘how different configurations of knowledge practices are consequential, contributing to specific rearrangements’ (Puig dela Bellacasa, 2017, p. 28), and for others still, it has prompted ‘staying with the trouble’ of the unfinished business of our entangled responsibilities and accountabilities (Lindström & Ståhl, 2020; Pihkala & Huuki, 2019, 2023).

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Thinking with and Returning to: Introducing the Participatory Research and Development Process To map the possibilities of response-ability for careful engagement, we ‘think with’ (Jackson & Mazzei, 2011) and ‘return to’ (Barad, 2014) the contemplations prompted by our own engagement during the participatory research and development around workplace harassment interventions briefly introduced in the opening section of this chapter. By thinking with and returning to, we refer to a double move: we are exploring the possibility to think of our reflexive orientation by ‘plugging it in’ (Jackson & Mazzei, 2011) with the notion of response-ability and, at the same time, revisiting the case to animate the otherwise easily abstract concept of responseability. To provide a context, the participatory research and development process from which this chapter stems was part of a larger project on the professional uses of social media in the field of workplace safety and well-being that took place in Finland in the early 2010s. Our collaboration in the project revolved around one of its four pilot studies. The first author was engaged ‘in the field’ during the study while the second author engaged in the process off the field, supporting the first author in her work in regular meetings and collaborative discussions that brought together our interdisciplinary backgrounds (joining STS, transdisciplinary feminist scholarship, educational sciences, cultural anthropology and participatory design). With the pilots ranging in focus and approach, our pilot was related to professionals and practitioners working to develop their collaboration around prevention and intervention regarding workplace harassment, inappropriate behaviour and bullying (Pihkala & Karasti, 2013, 2016). Being a phenomenon occurring across workplaces with serious effects to wellbeing, the aim of our pilot was to investigate the conditions and constraints of using social media with the varied stakeholders working around this phenomenon and to develop a new collaboration model to support learning, networking and cooperation among them to better harassment prevention and intervention practices. In terms of methods and methodology, our research approach was motivated by participatory design—a practice-based approach to design invested in involving users and stakeholders in the decision-making of design and an originally politically motivated field committed to accounting for multiple and marginalised voices, democratic idea(l)s and justice (Simonsen & Robertson, 2012). Thus, during a time span of about a year and a half, the first author engaged with two core groups of participants. First, she worked with two key collaborators, professionals from a national study centre for work unions, who had been involved in the project from its conception. The development process was planned and carried out in close collaboration between them and the researcher. Another central group of participants consisted of union professionals, representatives and shop stewards. This group of approximately 20 persons was formed by invitation, and the members of the group participated at different stages in a set of 10 workshops in which the forms and

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contents of the to-be-designed collaboration model and network were imagined, developed and piloted. In our engagement with these groups of stakeholders, we employed ethnographic and participatory research and design methods (Blomberg et al., 1993; Blomberg & Karasti, 2012). The first author engaged with the key collaborators from the study centre in meetings, check-ups and informal discussions spanning the duration of the design process. This collaboration was crucial, as together they planned the process, including the series of workshops to design the to-be-built collaboration model. Through their knowledge of the field, the key collaborators informed the process on what kinds of practices and activities would help forge collaboration ideas for the tobe-built model and who could or would need to be involved in the design process. The other central core to the process consisted of the ten workshops distributed to cover the span of one year. The workshops included varied activities to map the field of interventions, share experiences of existing collaborations and bring about the needs of the stakeholders as well as to generate and collate content such as case stories, materials and links for the future collaboration model (described in more detail in e.g. Pihkala & Karasti, 2016). In between the workshops, the activities and processes launched in the workshops were also continued online—for example, working on stories of intervention cases was kicked off in a workshop session but agreed to be continued also online. Working together in planning the contours of the collaboration model, the key collaborators of the study centre and the invited stakeholders formed a kind of ‘pilot group’ for the to-be-built network, and through this collaboration, the new social media–based collaboration model was designed and eventually made open for new participants, thus expanding to include members of the wider community of professionals. Engaging with the stakeholders in these manifold research encounters entailed discussions and reflections in meetings, collaborative activities in the workshops, online work sessions and informal chats during coffee breaks. This helped us learn more and more about ‘workplace harassment interventions’ as the phenomena we were engaging with, the matter of concern at the heart of our research and development process. We were reminded how the situations of harassment are complicated and tend to be prolonged. Moreover, the processes of intervention look quite different, depending on the stakeholders, who sometimes have conflicting interests that might even produce distrust in cooperation. This engendered a layer of sensitivity in the process: we learned of the tensions around diverging interests when it comes to harassment and its sensitive nature and about the emotionally strenuous and affectively charged phenomenon of workplace harassment as a topic of address. We also learned how, for navigating those affects, tensions and diverging interests, the questions of privacy, trust and confidentiality were central conditions and constraints for building collaboration. Over time, this unfolding understanding of the nature of the phenomena at the core of our process began to inform the shape and form of the to-be-built collaboration model. Although we had started with a vision of a broad-ranging and inclusive collaboration model and network, the end result was quite different: the collaboration model and the network that grew out of the work with the pilot group did not include diverse stakeholders to the degree we had

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initially envisioned and was not formed to afford diverse voices and experiences to be heard. Instead, it took the shape of an educational and supportive network for a very distinct group of stakeholders with a distinct perspective on interventions. As researchers, we were constantly navigating between the initial aims of the study, the unfolding process, the emergent concerns and the enacted inclusions and exclusions, and it was these navigational moves that eventually slowed us down to contemplate also care anew. To elaborate, already during our engagement with the participants and the phenomena of harassment interventions, we had grown increasingly intrigued as to how we could fashion our engagement in a responsible and accountable manner with this unfolding process that was pulling us into these unexpected directions. The process seemed to issue invitations that fell out of the scope of our initial plans and objectives but which nonetheless seemed significant. For this, we employed and fashioned a reflexive orientation that we began to refer to as ‘reflexive engagement’ (Pihkala & Karasti, 2016). What we aimed with this notion and praxis was to bring forth how the ways of ‘being there’ with sensitivity and attentiveness to power, politics, ethics and difference (e.g. Phillips et al., 2013) could be ‘harnessed’ to tend to the things and issues that mattered beyond our initial objectives and follow those emerging issues as part of the process (Pihkala & Karasti, 2016). Our theoretical–methodological wanderings and wonderings after the project (Pihkala, 2018; Pihkala & Karasti, 2018, 2022) then brought us to feminist new materialist ontologies and new conceptual companions—namely, the aforementioned new materialist ethics of response-ability. This started to offer us more help in grappling with the intricacies at stake in our engagement. In this chapter, we return to (Barad, 2014; see also Pihkala, 2018) our contemplations of these intricacies and continue to think through the lens of response-ability to better unpack care in our engagements with the unfolding process and the emergent phenomena at its core. Instead of retracing the process, each of the following three sections elucidates different registers for care within the process. For mapping care, the theoretical–methodological takes on response-ability are put to work. With them, we start with careful engagement enacted as a matter of curious attentiveness in the minutia of practice to then follow the process to the middle from where and within which decisions and ‘cuts’ were made as to what the outcome of the process would be like. Here, we zoom in particularly on the exclusions and inclusions we participated in making and the effects they had. Finally, we return to the phenomenon at the core of the process—workplace harassment—and ‘stay with the trouble’ (Haraway, 2016) of our situated, partial engagement with it. Through these three careful pauses, we want to both illuminate care’s manifold tones and tenors and—importantly—show how they fold into our practices and processes as a matter of careful engagement.

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Careful Engagement in the Minor The first layer to careful engagement brings us to the minutia of participatory practices that every and all engaged practice-based processes entail—irrespective of how much close attention they receive in academic discussions and debates. As described above, our study entailed a myriad of events and encounters, such as varied workshop activities for testing and trialling social media platforms, writing stories and group discussions to map relevant contents. These all produced significant input to the development process and to the to-be-built collaboration model. However, as we met between the authors regularly in between the meetings and workshops, we were increasingly slowing down with events, moments and feels that were overspills (Michael, 2012)—‘in excess’—to what we were working with. To trace this back to the engagements in the meetings and workshops, ‘being there’ in the workshops or talking with the collaborators, the field-working researcher was putting effort to notice subtle shifts in the affective atmosphere and she was pausing with lingering contemplations in the participants’ discussions and allowing herself to be caught by quickly passing moments—a tone of hesitation in a voice or a shift in position that might even seem unrelated to anything that we were doing but which the researcher nonetheless sensed-felt, as a gut feeling, that there might be something significant there. More importantly, over the course of the process, the researcher was returning to these accumulating affects and things that had stuck with her, particularly in collaborative reflections and musings with the second author between the engagements with the ‘pilot group’. The subtle fleeting moments thus accumulated and re-materialised in discussions and then again ‘in the field’ as the insights travelled with the first author and became part of her engagement with the process, its participants and the decisions that were made. Despite the almost film-like, translucent quality of this ‘engagement in the minor’, we argue that this embodied sensibility is central to the careful engagement mapped here: in the minutia of the process it allowed us to sense and feel our way, for example, around the affective nature of the phenomena we were working with, the emotional toll of working with harassment situations, the complexity of workplace politics and the histories of institutional hesitations between the employers’ and employees’ sides. These were not necessarily articulated out loud but were rather present in the discussions and workshops as alternating affective tones and cues. It was particularly the sensitivity inherent in the phenomena that articulated itself intelligible to us in/through such fleeting moments. In doing so, we would know something in a way that we had not expected to know or to matter and take it seriously, giving it recognition and allowing it to be an acknowledged part of the process. This kind of openness to becoming-with the events’ ephemeral and fleeting qualities might be captured as what Kathleen Stewart (2011) calls ‘affective attunement’. It moves beyond reflexivity as critical attention to the dimensions of power, positionality and difference as it has been understood in feminist praxis (Hesse-Biber & Piatelli, 2012). Thinking about this critical attention with response-ability instead

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of granting reflexive agency to a human being, what becomes foregrounded is the rich, dynamic relational unfolding of events. This suggests a different, more embodied understanding of attention that does not start with or stem from what is known or assumed to be worthy of attention (Stengers, 2011). Instead, it stems from curiosity and slowness, becoming-with the event (see e.g. Bozalek, 2020) as a sensitivity towards things and issues that occur beyond the pre-set agenda, beyond activities and tasks. It is about attunement and attentiveness to the flows of the events.

Careful Engagement in the Middle As we worked with the ‘pilot group’ over the span of the workshops, the surfacing understanding of the sensitivity of the work around the phenomena of workplace harassment interventions began to increasingly inform the decisions within the process. One of the aspects that we later paused to consider was the question as to who was decided to be involved in the process (see Pihkala & Karasti, 2018). To those unfamiliar to the field, workplace harassment interventions involve a range of stakeholders, including professionals and practitioners representing the employer, those representing the employees and those offering assistance and support, such as workplace health service providers, consults and other experts. However, from the beginning of the process, we encountered a need to start small. Originally, this had been a practical matter—it was easier to reach out to people close to the key collaborators. Thus, in practice, this meant that when inviting workshop participants, only employee side—that is, shop stewards and union representatives and professionals—were included. Employers’ representatives were left out, as well as workplace health organisations. This was intended as a temporary ‘cut’, a demarcation line, that would be reworked later. As the workshops kicked off and the group engaged in a range of activities both off- and online, this cut came to matter in significant ways. The trustful atmosphere afforded by the composition of the group made the collaboration fluent, and many of those engaged in the process invested time in participating in the workshops and sharing their experiences from their work. It felt that working with a smaller group afforded a space that was free(er) of the historical and affective traits of workplace politics and instead made room for the participants to share experiences, frustrations and the stress and emotional tolls of working with harassment situations in a climate of safety. Indeed, what happened as we continued working with the group was that the desire to share and learn about and around harassment interventions free of the tensions it had inherited started to emerge as a mattering matter. Wanting to take this seriously, when discussing and agreeing on the subsequent workshops and the next steps of the process with the key collaborators, we thus refrained from keeping to our initial aims of expanding the group. Instead, we crafted activities so that the participants could continue to explore and work around the things that seemed to hold significance to them. Doing so shifted our attention and focus from the abstract and universal understanding of harassment interventions that

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we had begun with to considering harassment intervention as situated, collaboratively co-constituted matter of concern and care (Pihkala & Karasti, 2018; see also Latour 2004; Puig de la Bellacasa, 2017). This was a phenomenon that emerged from and resonated with the participants’ situated everyday work experiences where harassment and its interventions are embodied, material and affectively felt. Working this way and making these cuts brought us also in touch with ‘ecologies of care’ (Nicholls et al., 2021) that were already circulating ‘out there’ (Lindén & Lydahl, 2021; Martin et al., 2015) in how the participants shared and valued their knowledge and histories about their strand of work, how they built and maintained relations and how this all nourished their shared commitment to better intervene in workplace ill-being and violence. It was care-full in its own right. We suggest that thinking of this process, which led us to divert from our original objective, captures a new layer of careful engagement. Here, we understand carefulness to be enacted as responsiveness to emerging concerns. In our case, what came to matter was a concern more narrow in scope than what we had envisioned and the scope of the network, while including particular bodies and voices, left out others. At the same time, we were able to create conditions for a particular and situated—and in its situatedness, significant—experiences to surface and be addressed. Therefore, in the practices of research and development, we suggest that careful engagement is about letting go of ‘mechanical confidence’ (Stengers, 2011), that is, an orientation based on rationality and anticipation. It is about allowing less room for the ‘dominance of planning’ (Davies, 2018) and resisting the lure of following a linear path in the process that still holds reign in many design fields. Rather, as a mode of care, we remain responsive to the unanticipated, emergent and indeterminate with all their partiality and risky contingencies.

Un/Learning Care(ful Engagement) We were content with the way the process unfolded: towards the end of the research and development process, upon mutual decision (and as the researchers’ engagement was diminishing towards the end of the project), the key collaborators were increasingly taking on the task of planning and coordinating the social media platform and the collaboration, which had now grown from a pilot group to a network. This also enabled the participants to continue with the development and expansion of the work after the project ended. What had started as a pilot became established as a viable collaboration with a vision for continuity in building and supporting the participants around their work with harassment interventions and workplace well-being. While we certainly cannot know for certain, we left with the sense that perhaps the ‘cuts’ that were built around a concern—embedded in and stemming from situated work practices instead of being built upon the abstract vision of a disembodied notion of harassment intervention—made a difference. However, in line with Barad (2007), we acknowledge that the cuts we enact always entail both inclusions and exclusions—starkly present in the voices, bodies

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and knowledges that were excluded in our case, for example. We succeeded in designing something viable that could also be sustained after the project, but this did not mean we would not have contemplated those aspects that fell out of the scope of our care: the collaboration model and the network did not, for example, include the voices of those whose lives are most affected by harassment—that is, those experiencing it. That the collaboration model was built to include only one sector of stakeholders involved in harassment interventions—as explicated above—did little to help solve, for example, the potential tensions between different stakeholders (that were visibly present as affective tones), which might be absolutely crucial for intervention processes to become more effective. In other words, the care we hoped to enact was simultaneously leaving other things uncared for (see Puig de la Bellacasa, 2017). As a final, speculative gesture in our enquiry into careful engagement, we maintain that ‘staying with the trouble’ (Haraway, 2016) of the complexities of the process offers important routes to rethink careful engagement as mundane, ordinary, partial and provisional doings within and as part of the world. This means that although our cuts entail exclusions and that there is a ‘darker side’ to care (Lindén & Lydahl, 2021; Martin et al., 2015), this should not be a reason for resignation. Response-ability and the relational ontology underpinning it help us situate our process within harassment interventions as part of the wider webs of the work to better workplaces and address harassment and injustices. While we certainly did not bring diverse stakeholders together, following Barad (2007, p. 185), ‘each intraaction matters’. Thinking this way, we can begin to understand the collaboration model we developed as having a role in helping nurture conditions of care for the participants to continue their work. Perhaps, despite its limits, the collaboration model we designed together responded to something that mattered and ‘breathed’ at least a tiny bit of life into the entangled responsibilities of socially just worlds (see Barad, 2007, p. x).

Thinking Careful Engagement with Response-Ability In this chapter, we have employed the notion of response-ability to map different layers of careful engagement in our participatory research and development process. The potentiality in this is that when we shift the sole focus of ethical agency away from the self-standing, well-intending researcher, the carefulness of engagement also gains new tones. In our case, connecting to the emerging new materialist scholarship and theoretical-methodological explorations, we began to map care in the minutia of participatory practices as an embodied sensibility and attentiveness towards the ephemeral and fleeting, intentionally foregrounding the sensed-felt in a world that prioritises that which is voiced and articulated. We also captured care in the middle of the process, where we participated in making ‘cuts’. These cuts aimed to be responsive to the things that mattered then and there, taking a risk in following unplanned routes. The choices we made in refraining from including diverse

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stakeholders and to slow down with that which emerged mapped different routes for what we were engaging with but simultaneously reminded us that careful engagement occurs from within the middle of things, not from an arms-length. It is this in-the-middleness that is central to response-ability and offers speculative possibilities for imagining careful engagement. With response-ability, the invitations for response and care become issued in each intra-action within and through which we as researchers become attached, plugged in and responsible for ‘making different worldly entanglements [. . .] accounting for our part of the entangled webs we weave’ (Barad, 2007, p. 384). The locus of careful engagement is reconfigured, therefore, from researchers mapping the coordinates of careful engagement to sensing and feeling the affective, material, vital and political (Puig de la Bellacasa, 2017) potentialities of care that be(com)ing engaged and engaging with affords. Our engagements occur in partial, provisional and inevitably non-innocent ‘middles’. In such middles, our research engagements are not (only) objects for carefulness but entanglements full of multiplicitous care relations. Indeed, assuming care as any one thing will hide the everyday patterns of vital, material, affective and ethico-political care circulating ‘out there’ (Puig de la Bellacasa, 2017) and prevent us from paying attention to the mundane everyday moments that also play a role in making meaningful wordly configurings. Thus with response-ability we add to the notion of careful engagement by foregrounding attentiveness, careful curiosity and responsiveness in the situated practices of our engagements where our practices matter, even if ‘in the minor’, in the middle, and only in part.

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Phillips, L., Kristiansen, M., Vehviläinen, M., & Gunnarsson, E. (2013). Tackling the tensions of dialogue and participation: Reflexive strategies for collaborative research. In L. Phillips, M. Kristiansen, E. Gunnarsson, & M. Vehvilainen (Eds.), Knowledge and power in collaborative research: A reflexive approach (pp. 1–20). Routledge. Pihkala, S. (2018). Touchable matters: Reconfiguring sustainable change through participatory design, education and everyday engagement for non-violence [Doctoral dissertation, University of Oulu]. http://urn.fi/urn:isbn:9789526218434 Pihkala, S., & Huuki, T. (2019). How a hashtag matters – Crafting response(-abilities) through research-activism on sexual harassment in pre-teen peer cultures. Reconceptualizing Educational Research Methodology, 10(2–3), 242–258. https://doi.org/10.7577/rerm.3678 Pihkala, S., & Huuki, T. (2023). Safe and enabling: composing ethically sustainable crafty-activist research on gender and power in young peer cultures. International Journal of Social Research Methodology, 26(4), 363–375. https://doi.org/10.1080/13645579.2022.2026132 Pihkala, S., & Karasti, H. (2013). Reflexive engagement–reflexive orientation for participatory design. In Proceedings of the IADIS International Conference ICT, Society and Human Beings (pp. 85–92). Pihkala, S., & Karasti, H. (2016). Reflexive engagement: Enacting reflexivity in design and for ‘participation in plural’. In Proceedings of the 14th Participatory Design Conference: Full papers (Vol. 1, pp. 21–30). https://doi.org/10.1145/2940299.2940302 Pihkala, S., & Karasti, H. (2018). Politics of mattering in the practices of participatory design. In Proceedings of the 15th Participatory Design Conference (Vol. 2(13), pp. 1–5). https://doi.org/ 10.1145/3210604.3210616 Pihkala, S., & Karasti, H. (2022). Towards response-able PD: Putting feminist new materialisms to work in practices of participatory design. In Proceedings of the 17th Participatory Design Conference (Vol. 1, pp. 98–108). https://doi.org/10.1145/3536169.3537784 Pillow, W. S. (2003). Confession, catharsis, or cure? Rethinking the uses of reflexivity as methodological power in qualitative research. International Journal of Qualitative Studies in Education, 16(2), 175–196. https://doi.org/10.1080/0951839032000060635 Puig de la Bellacasa, M. (2015). Making time for soil: Technoscientific futurity and the pace of care. Social Studies of Science, 45(5), 691–716. https://doi.org/10.1177/0306312715599851 Puig de la Bellacasa, M. (2017). Matters of care. Speculative ethics in more than human worlds. University of Minnesota Press. Renold, E. J., & Ivinson, G. (2022). Posthuman co-production: becoming response-able with what matters. Qualitative Research Journal, 22(1), 108–128. https://doi.org/10.1108/QRJ-01-20210005 Rodríguez-Dorans, E. (2018). Reflexivity and ethical research practice while interviewing on sexual topics. International Journal of Social Research Methodology, 21(6), 747–760. https://doi.org/ 10.1080/13645579.2018.1490980 Simonsen, J., & Robertson, T. (2012). Participatory design: An introduction. In T. Robertson & J. Simonsen (Eds.), Routledge international handbook of participatory design (pp. 1–17). Routledge. Soedirgo, J., & Glas, A. (2020). Toward active reflexivity: Positionality and practice in the production of knowledge. PS: Political Science & Politics, 53(3), 527–531. Steen, M. (2013). Virtues in participatory design: Cooperation, curiosity, creativity, empowerment and reflexivity. Science and Engineering Ethics, 19(3), 945–962. https://doi.org/10.1007/ s11948-012-9380-9 Stengers, I. (2004). The body we care for: Figures of anthropo-zoo-genesis. Body & Society, 10(2–3), 111–134. https://doi.org/10.1177/1357034X04042938 Stengers, I. (2011). Relaying a war machine. In É. Alliez & A. Goffey (Eds.), The Guattari effect (pp. 134–155). Continuum. Stewart, K. (2011). Atmospheric attunements. Environment and Planning D: Society and Space, 29(3), 445–453. https://doi.org/10.1068/d9109

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Strom, K., Ringrose, J., Osgood, J., & Renold, E. (2019). PhEmaterialism: Response-able research & pedagogy. Reconceptualizing Educational Research Methodology, 3(2). 1–39. https://doi. org/10.7577/rerm.3649 van der Tuin, I. (2016). Generational feminism: New materialist introduction to a generative approach. Rowman & Littlefield.

Suvi Pihkala is a postdoctoral researcher in gender studies in the University of Oulu, Finland and a member of a research-activist FIRE research collective (www.fire-collective.com), a transdisciplinary team of researchers that collaborates closely with creative professionals, NGOs, educators and children to address gendered and sexual injustices in and around education. Her research is inspired by feminist posthuman, new materialist and post-qualitative approaches and the re-thinking of ethics and responsibility they have prompted in and for theory, methodology and praxis across disciplinary fields. In her research Pihkala has focused on investigating how new materialisms can be made to matter in the diverse context of participatory, collaborative, socially engaged, arts-based and creative research and design practices. Her most recent work has engaged with these questions in creative research with children and young people on gender, sexuality and power in research supported by the Research Council of Finland and University of Oulu spearhead funding in human sciences. Helena Karasti is an interdisciplinary scholar who has held academic positions in Finland, USA, Sweden, Denmark and Germany. She has a long-term interest in exploring relations between participatory design, ethnography, feminist theorizing, and science and technology studies. Her initial studies of situated collaborative practices of technology use and design have grown into exploring ‘infrastructuring’, i.e. how situated activities form and are formed by larger infrastructures over more extended temporalities. Throughout her career Helena has been particularly intrigued by the politics of participation, engagement, and care in the complex and often contested settings of transforming technologies.

Chapter 4

Composing Telehealth: Drawing Actors Together to Enact New Relations Niels Christian Mossfeldt Nickelsen and Paul Duguid

Introduction The analysis in this chapter is built around a division separating what Paul Duguid has elsewhere described as rule-based research versus practice-based research (2006). When research takes its outset in rules, certain a priori assumptions lie at the core. Over time, one may then assess to what degree these assumptions hold. When using this approach, a researcher may fail to see that a field is partly formed from inside by means of improvisation and caring (Pratt et al., 2022). We will explore these issues in an analysis of the Danish Government’s national telehealth strategy, drawing attention to the too easily overlooked situated making of telehealth services. The aim is to contribute to the notion of careful engagement by thinking about ways to do research alongside (Latimer, 2013, see also Chaps. 6 and 7). In the introduction to ‘Care in practice’, a seminal anthology in Science and Technology Studies (STS) of care, Mol, Moser and Pols define care as persistent tinkering in a world full of ambivalences and shifting tensions (2010, p. 14). We present careful engagement as a matter of composing, assessing, and enacting new relations. This involves mediating between previously unconnected actors and bringing together things that do not easily hold together. This approach to careful engagement is different from engaged research in organization studies (Van de Ven, 2007), in climate change research (Vanzandt, 2020) and in gender studies (Zaatari et al., 2021). Engaged research in these arenas aims to provide a methodology: a clear

N. C. M. Nickelsen (✉) Faculty for Health and Social Science, Centre for Health and Technology, University of SouthEastern Norway (USN), Drammen, Norway e-mail: [email protected] P. Duguid University of South-Eastern Norway (USN), Drammen, Norway e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_4

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path of actions for researchers. Our aim is, by contrast, to develop a set of tools to think with when trying to influence the appropriation of socio-material systems. We will reflect on researchers’ roles in knowledge production and improvisations while appreciating the performative effect of various care contexts (Hamblin et al., 2017). For some years, we have been interested in how telehealth devices and practices address chronic illnesses among old persons. Telehealth constitutes a strong global endeavor to help care providers meet important needs of people seeking care. This goes under many names with slightly different meanings such as telemonitoring, telemedicine, telecare, e-health, and telehealth. We use telehealth, to frame the most general version. After 2050, more than one in ten inhabitants in Western Europe will be over 80 years old (Danmarks Statistik, 2020) and incidences of COPD and diabetes type 2 will rise (Jensen et al., 2017). Telehealth is already an important means of addressing these issues. An asset of telehealth is the way it makes care providers accessible to a larger number of people (Susskind, 2020). This asset became particularly significant in the context of the Covid-19 pandemic. Policymakers have long been aware that telehealth provides such accessibility despite challenges associated with recruitment of care providers. In addition, telehealth may provide options related to collaboration across healthcare contexts not yet properly investigated and whose challenges are still unclear (Nickelsen & Bal, 2021). To address these issues, we begin by describing the empirical background of the analysis. Then we discuss the analytical notions ‘composition’ and ‘drawing things together.’ These notions help us reveal how telehealth platforms disturb existing care relations while their users nonetheless expect the relations to be the same as before the platforms’ introduction. Next, we discuss the engagement of the researcher in addressing these issues and some crucial methodological dilemmas that emerge as an effect of this engagement, in particular controversies that arise concerning the focus of the research. In conclusion, we discuss the chapter’s contribution to careful engagement and conclude that composition comes with a price.

Background: National Rollout of COPD Telehealth Services in Denmark A few years ago, the Danish government decided on a national rollout of telehealth services for old persons living with chronic obstructive pulmonary disease (COPD). The goal was to provide quality care based in homes and so avoid referrals to hospitals. The program assumed that before long all care providers would work from one platform, which would support collaborations between municipal health centers, general practitioners, and outpatient lung clinics. In 2017, based on two competing 3-year large-scale projects (Telecare North and NetKol), the Danish government decided on a specific model and platform (Digitaliseringsstyrelsen, 2016). The program required cross-sector collaboration to provide quality care while preventing costly and, for the patient, unpleasant hospital admissions

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(Sundhedsministeriet, 2019). Telecare North was the most successful large-scale project in terms of collaboration among care contexts. Consequently, plans developed to introduce the Telecare North model in all Danish municipalities. Soon critical voices established that neither of the large-scale projects were convincing in terms of the central variable: limitation of hospital admissions. A group of renowned doctors criticized the government’s plans for being politically rather than clinically justified. Among officials in municipalities and regions, there was much debate about how to implement the project given these contestations. Some municipalities would for instance be too small to make adequate business cases. The Digitization Agency soon made a tender for what was to be a mandatory national platform emphasizing, however, that it would be possible to adjust modules to reflect local circumstances. According to this plan, the rollout would be complete by the end of 2019. Due to political debate, financial scrutiny, and data security, we however still await this rollout (Nickelsen & Rath, 2021).

The Commitment to Telehealth Services One of us, Niels Christian (hereafter ‘the researcher’) engaged with telehealth providers and users for some time through a national research council project. This chapter focuses on attempts by the providers to draw things together to compose, assess and enact new relations and effects by mediating between previously unconnected actors. This required bringing together things that do not easily hold together. Zuiderent-Jerak (2015) suggests that one of the crucial problems in discussions of interventionist research is that a researcher’s act of engagement is detached from discussions of production of knowledge. He proposes that we conceive a researcher’s commitment as a situated experiment and as a generative, rather than teleological, mode of knowledge production. This refers to the idea that researchers may commit themselves and they may even take sides without following an overarching principle or a particular rule as guidance about where to go with their engagement and research. However, as we will see such assumptions about generative research were challenged, when the care professionals contested the researcher’s ideas about what ought to be composed and cared for (Duguid, 2019). The researcher committed himself to a three-year collaborative project with a Danish mid-size municipality. Here, the telehealth services comprise a platform (an app) that care receivers can freely download on their own devices. They send figures to a nurse at the health center. They may then communicate about the figures through a message system or by phone. The platform moreover gives access to various sources of information about the disease. We propose that telehealth has several implications for care providers as well as for the old persons in terms of finding themselves in fitting and comforting care situations. We would like to emphasize that none of the old persons that took part in the telehealth service were part of it because they lacked other options. They all committed themselves to the telehealth services to benefit from it.

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Theory: Inscriptions and Their Contextual Processes Latour argues for a consideration of the practices of knowledge construction and against an institutional or purely cognitive view of science and technology. He establishes the critical role that inscriptions (figures, graphs, devices) play in the formation of science and other practices. They comprise, he argues, devices to facilitate thinking, communication and the fixing of ideas. In his empirical work, he explores the everyday practices of scientists (Latour, 1987). In relation to these, he applies the idea of ‘drawing things together,’ for instance by way of making a map, and he contends that we might usefully focus on the role of inscriptions and trace the contextual processes through which practices emerge and are deployed. In the process, he develops the idea of inscriptions allowing interests and care to emerge (Latour, 2012). We found inspiration in these ideas to draw actors together around the telehealth platform as a kind of situated experiment to explore what ideas of care emerge, how a researcher is involved and how that involvement affects knowledge about contemporary care for old persons.

The Telehealth Platform Disturbs Existing Care Relations Platforms are assumed to connect people. In the telehealth services, the platform connects nurses, doctors and people living with chronic illnesses. The discourse of platform often assumes preexisting arrangements and relations that will continue, undisturbed by the platform. Yet, in this case, as in many others, as opposed to being a neutral support, the telehealth platform disrupts, challenges, and changes established relations. So, doing, the platform raises the question: how are the health center, the GPs, and the clinic to collaborate? To find answers to that question, it seemed important to bring representatives of the different healthcare sectors and contexts together to recognize, assess, and agree on those disturbances and changes. That required the participation of the researcher, and eventually the introduction of the telehealth services provided the background for the invitation of a researcher. The discourse around platforms helps to understand something important about the telehealth services. ‘Platform’ is specific enough to mean something, and vague enough to work for multiple audiences across venues (Gillespie, 2010, 2017). To talk about a platform is not meaningless, but neither is it inherently clarifying. The telehealth platform has many constituencies. It embeds national health policy concerned with tensions between quality and costs. It embeds municipalities aiming to limit expensive admissions to hospitals. And it embeds care providers’ wishes for a tolerable working environment. Moreover, it embeds old persons wishing to manage their everyday life with chronic illness and have a good life. Consequently, implementing the telehealth services is complex. We cannot simply equate good telehealth with positive feelings among old persons and their care providers. To create knowledge about various telehealth agendas, we need to deal with mutual

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contestations. As part of our research, it has been important to understand how the use of technologies in practice deviates from the instructions in resources such as users’ manuals by which such technologies are conventionally understood (Orr, 1996). People use technologies such as ‘platforms’ in particular contexts, including sets of social relations. In engaging with new technologies of intermediation, users can come to see themselves, their social relations, and the technologies in a new light. In addition, this new awareness may unexpectedly change or challenge some of those relations. Hence, understanding socio-technical interventions, such as telehealth, in the context of established relations, such as healthcare, requires investigations into and even participation in the practices that evolve around the technology. In the process, the insights both of users and of researchers investigating those users come together in interesting ways that can enlighten both researcher and user (Duguid, 2006; Orr, 1996).

Composition as Caring Increasingly, STS researchers are interested in the effects their research have in their fields of study. This may be because a growing number of grants require close collaboration with private and public actors outside the universities (European Union, 2021). Researchers are increasingly invited to take extensive roles, thus emphasizing the participant axis of research through participant observation. This last aspect relates, we think, to a desire to embed knowledge produced by researchers in different sorts of practices. In line with this, Elgaard Jensen (2012) proposes three modes through which STS researchers participate in projects focusing on the interplay between technology and people: 1. ‘Invitations’ that primarily comprise descriptions and analyses done from a quite marginalized position. 2. ‘Availability’, where a researcher is invited to not only describe and analyze, but also to participate in discussions with members of the studied collective. 3. ‘Composition’ where a researcher is involved not only in description, analyzing and discussion, but also in assessing and enacting new relations and effects by mediating between previously unconnected actors. Here, a researcher often faces substantial difficulties in holding everything together. This may be why this last role is criticized for undermining a researcher’s clear-sightedness and special assignment as an independent actor (Vikkelsø, 2007). The notion of composition as defined by Elgaard Jensen seems to fit well with ideas about care and tinkering discussed in the STS care literature. In the context of UK’s foot and mouth epidemic in 2001, Law proposes that caring and tinkering is about holding together that which does not easily hold together (Law, 2015, p. 69). We see composition as the challenge of holding things together in a world full of tensions and ambivalences. In what follows, we discuss the difficulty of drawing actors together from different venues to assess relations despite their being held apart by

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the telehealth app and platform (Nickelsen, 2023). Lynch (2009) proposes to enact a researcher’s engagement in the empirical field by way of a number of localinteractional spaces. Local-interactional spaces provide opportunities for researchers to think aloud about observations together with key actors from the studied collective. This emphasizes that being there and communicating with participants holds the potential to involve informants as co-researchers. In the following, we discuss the researcher’s work to involve informants as co-researchers and draw actors together and thus care for the situation, fixations, and new relations emerging because of the introduction of the telehealth platform.

Following the Making of Telehealth The researcher worried about the government’s conclusion to launch a mandatory rollout on a common platform based on Telecare North. He feared this project would run into difficulties because of the lack of collaboration between the actors he had observed in the two large-scale pilot project periods. The researcher now entered cooperation with a mid-size Danish municipality to take a closer look at certain procedures before the national rollout. The municipality had developed their own app and had concluded that to have a reasonable business case, telehealth services had to be provided for people living not only with COPD, but also with diabetes type 2, cancer, and heart problems. The Director of Health and Care welcomed the researcher and invited him to collect data based in the health center. At this time, various expert committees provided advice on how to collaborate among the involved healthcare contexts (Region-Syddanmark, 2018; Sundhedsstyrelsen, 2017). While these documents painted a picture of a seamless collaboration between the different healthcare contexts, the researcher started to study the actual relations between the health center, GPs, and the local lung clinic. This produced a different picture of how these contexts relate to each other.

Drawing Actors Together to Enact New Relations In this section, we discuss how the researcher drew actors together to assess and enact relations. Later we will discuss the implications of this composition in terms of different interests among the care professionals and among the researcher and the care professional. We will report from two sorts of local interactional spaces: 1. The steering committee meetings (SC) (A, B, C) comprising the Director for Care and Health, the IT manager, the health center manager, a telehealth nurse, and the researcher. The SC was an important arena for the researcher not only to discuss observations, but also to get access to informants.

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2. The cross institutional workshop consisting of participants from three sectors: the health center, GPs, and the lung clinic at the local hospital.

Steering Committee-Meeting (A): Doubt About Where Telehealth Is Heading At the first meeting, the SC discussed how several institutions and actors contested the national telehealth rollout. Reference was made to major political disagreements about the vision of a one-size-fits-all shared national platform. At this time, five regional programs were set up to connect local actors. Thus, it was assumed, civil servants and professionals from municipalities and regions could find local solutions to the government’s vision of a common platform. The crucial questions were how to divide roles among hospitals and health centers? How to meet the quite different needs of small and large municipalities? How to adapt the common platform to local strategies and aims? Moreover, what about the GPs? They had announced that they would not monitor COPD patients in any way. At this point, it was uncertain where the telehealth services were heading. The municipality had invested time and resources in their own platform. The researcher presented the SC with his idea of involving more people from various sectors in the discussion of telehealth as an already existing, but especially as a future rehabilitation practice based on a common national platform.

Steering Committee-Meeting (B): Time to Summon the Key Professionals At the next SC meeting, a new social democratic government with less enthusiasm for telehealth had taken office. This sowed more doubt about the telehealth rollout. The prospect at this time was that a few knowledgeable centers were to be established around the country. Smaller municipalities were then to purchase telehealth services from the centers. At this SC meeting, the director established that he would like to build such a center in the municipality. Also, he argued that the financing of telehealth was not sustainable at that moment. The head of the health center begged the researcher not to tell the nurses about the shaky ground that the telehealth services now stood on. “They have a hard time dealing with this uncertainty”, she explained. Obviously, she preferred to calm things down to get peace of mind in the health center. In the middle of this insecurity, the researcher proposed that it was time to invite key individuals from the health center, the clinic, and GPs for a debate on the division of labor linked to the planned cross-institutional collaboration about telehealth. The researcher offered to conduct in-advance

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interviews with all participants and gather a robust knowledge base from which the debate would unfold. The SC agreed that this should be the next step.

The Cross-Sector Workshop: Assessing Relations Prior to the National Rollout The researcher planned the workshop and invited participants. In advance, he conducted interviews with all the participants, and he handed out a logbook. The participants were to illustrate with photos, drawings or examples what would be good relations among the health center, the GPs, and the clinic. Many interesting illustrations came out of it (we will not go into this here). The researcher started by interviewing older persons living with COPD. Then he interviewed and observed nurses at the health center. Next, he interviewed GPs and, finally, MDs, and nurses at the lung clinic. The interviews circled around how telehealth can make lives better for people with COPD. The researcher moderated the 3-hour workshop. Table 4.1 is a flowchart demonstrating how the discussion was organized. At the workshop, the GPs gave examples of some of their patients that had shown interest in telehealth, but they could not point at even one example of a patient for whom they believed telehealth would be helpful. While this statement appeared reluctant, several nurses expressed that they would like to communicate more with doctors about citizens that were involved in telehealth. The GPs also agreed that more communication with nurses would help. One of the GPs emphasized that he regarded the telehealth services as a significant relief for him as he had been in the profession for many years and considered COPD patients a burden. Most GPs however complained that the telehealth services could not do anything useful for the patients, assuming it could only detect problematic issues and refer them to GPs so the latter will have even more to do.

Table 4.1 Flowchart of the cross-sector COPD workshop. (Source: N.C.M. Nickelsen)

1.What is a good patient flow?

• 17 semi-structured interviews • Presentation by author at the workshop

2.What makes the good life with COPD telemonitoring? • Presentation of the participants´ photos and log-books

5.Discussion

• What can we do together? • Where are the barriers?

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Prior to the workshop, the health center had built their own app and telehealth system to limit expensive re-admissions to hospitals. In the Danish universal health care system, the municipalities must cover a significant part of the expenses if a citizen is admitted to hospital; the GPs on the other hand are remunerated with a lump sum for each chronically ill patient. This means they have no incentive to do more for COPD patients. It also turns out that the GPs find it sufficient to follow rules of what to do to COPD patients based on the so-called gold standards i.e., lung function measurement. The clinic deals only with the most ill patients and, rather than telehealth, they aim at making sure that there are medications in the patients’ homes to start self-treatment as rapidly as possible in case of an exacerbation. The workshop made it clear that collaboration across the invited actors was hampered because each group not only holds different ideas of good care, but each is also subjects to different performance systems. One of the GPs announced that patients would benefit if GPs and nurses shared measurements systematically along the way and evaluated the progression together. For instance, could GPs and nurses have telephone meetings once every 3 months? From this proposition, the participants started talking about principles for keeping each other informed about patients as they transition between the healthcare sites. Although this initiative might appear prudent, it shows that the composition of participants from different care contexts at the workshop in fact created common attention about the mutual responsibility that the national rollout will soon require (Nickelsen, 2023). The GPs and the clinic professionals explained that before the workshop they did not know about the telehealth platform. Correspondingly, several nurses explained it was a revelation to learn that the GPs are reluctant because they have no financial incentive to participate. Before learning about this, they did not understand the GPs’ restraint. As such, the researcher designed a workshop that mediated between previously unconnected actors and held together that which does not easily hold together. He could feel firsthand the tensions and controversies that exist between the different health contexts. Correspondingly, a complex discussion about the new requirements that the telehealth app allots was generated. This composition of actors highlighted that the platform disrupts existing practice and calls for new roles and responsibilities. Collaborative routines consistent with the platform had however not been taken care of yet and nobody in fact knew what to do with this. Therefore, in contrast to the expert panel’s coherent vision of a seamlessly connected healthcare system (Sundhedsstyrelsen, 2017), the discussion at the workshop revealed that different inscriptions and performance systems hamper existing relations and raises an obstacle to the government’s vision of national rollout of COPD telehealth services on a common platform. Therefore, we propose, the researcher was raising important issues through drawing actors together to discuss appropriate collaborative relationships as a response to the disturbance the telehealth platform had led to. Obviously, more had to be done and this was to be discussed at the next SC meeting.

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Steering Committee Meeting (C): From Collaborative Routines to Old Peoples’ Use of the Platform At the third SC meeting, the workshop was discussed. The health center manager notified that the discussion was about performance systems and various forms of accountability. This discussion was therefore not obvious in terms of care for old persons, which from this point ought to have been the focal point of the project. The researcher responded that the different financial incentives make it difficult to compose a continuous telehealth service. The director noticed that the mapping of different accountability systems was important. It was these cross-cutting issues that reflected the terms of reference of the national research council project that the researcher worked on. It now became clear, however, that this was not the main interest of the SC. The manager of the health center explicitly wanted to adjust the course of the research project in the direction of the old persons use of the app at home, as well as their contact with nurses. In other words, she wanted to focus on the work her department (the nurses) does. The SC supported this adjustment, and two more workshops were organized. We will however leave the municipality and the SC here. The empirical material discussed so far is enough to debate a few methodological dilemmas that rise as an effect of the platform and the researcher’s ambition to draw things together and connect actors that were previously unconnected.

Methodological Dilemmas Asking for what ‘we are encouraging caring?’ Puig de la Bellacasa (2011, p. 92) urges researchers not only to study how care is enacted, but also to think about researchers’ own cares and concerns; what worlds researchers want to question, encourage, and strengthen through research and engagements. Building on Puig de la Bellacasa as well as Zuiderent-Jerak’s (2015) idea about drawing a researcher more into knowledge production, in the following, we debate three ethical and methodological dilemmas that the researcher faced while attempting to compose careful and adapted relations among actors; (1) The controversy about focus, (2) The challenge of being an academic in a practice field, (3) Renegotiating care tasks.

The Controversy About Focus We have discussed the means through which the researcher became involved in building relations among actors that had not been connected before, and we have discussed how different aims and performance systems make an obstacle for developing synchronized and adapted relations. In addition, in engaged research, there is a risk that the researcher is overwhelmed by having to follow both the exhortations of

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the project description and the improvisations of the field of practice. We have already underpinned that in our case the researcher aimed at scrutinizing the crosssector relations and routines requested both by the platform and the project description. The researcher would have liked to compose more workshops to enact and support collaboration among the three sites of healthcare. Moreover, there is only little research in relation to cross-institutional cooperation around telehealth services (Andersen, 2018; Christensen, 2018; Nickelsen & Bal, 2021) while there is quite a bit of research about the use of screens in homes (Bitar & Alismail, 2021; Mort et al., 2015; Oudshoorn, 2011; Pols, 2012). Correspondingly, we claim, the research community needs clarification about cross-sector and cross-institutional relations and despite this, the researcher had to agree to deviate from this agenda. At the SC meetings, the researcher explained and argued for staying with this agenda. It soon became clear, however, that he could not continue along this road. It was a dead end and the researcher felt compelled to make concessions to the SC to maintain a good relationship. The workshop not only mapped important controversies among the different care provider contexts (Hoholm et al., 2018); it also mapped controversies among the participants in the SC. But why did the SC want to stop the mapping of obstacles to collaboration among sectors? This question is critical to understanding the challenges of continuous telehealth services. The Director for Health and Care had praised the work that was done up to this point concerning different performance systems. Three reasons seem likely. Firstly, because the SC wanted to support the nurses, who wished to learn more about how old persons conceive the platform. The nurses had appropriated the app and the SC wanted to appreciate their good work. Secondly, since the involved healthcare institutions work under different jurisdictions and accountability systems, and since the municipality and the Director of Health and Care do not have any control over these, the cross-institutional research focus did not appear attractive. Nobody has the power to decide what happens in between sectors. Thirdly, cross-sector research and collaboration is complex. Coordinated action across contexts requires time, resources, and support, all of which was difficult to breed in the municipality.

The Challenge of Being an Academic in a Practice Field Despite years of research in telehealth, it continues to be unclear how telehealth should be organized to support old persons living with chronic illnesses to manage their life better (May et al., 2011). In this study, the researcher aimed at being a carefully engaged partner by composing relations among actors that had not been connected before to frame a difficult discussion about having a good life with technology despite severe chronic illnesses. This perspective elucidates the challenges that arise in engaged research between social researchers committed to concepts, methods, and analysis and healthcare professionals committed to optimization of healthcare services. Not only are the various healthcare professionals committed to distinct ideas of good, so is the researcher. It is hardly surprising that

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several epistemic regimes complicate seamless collaboration (Knorr Cetina, 1999; Olaussen & Aanestad, 2010). As we have seen, even proponents in a small practice field may have difficulties agreeing on a joint research plan. Discrepancies arise between the requirements of methods and grants and problems that emerge in the research field. Lopez-Gomez discuss this sensibility about rupture between doing research and situated demands during field work (2020). He is frustrated by the agnosticism of actor network theory (Callon, 1984; Latour, 1987). Instead of just following the actor around in the field of study, sometimes, Lopez-Gomes finds it appropriate to act, that is, to do something that the situation demands. Now and then, he would like to direct others’ attention to injustices that he observed as part of his research—not just describe it agnostically (2020).

Renegotiating Care Tasks We, the authors, are concerned about current healthcare policy of introducing digital technologies in old persons’ lives without necessarily ensuring a good match and ethical soundness (Peine et al., 2020). Consequently, we aim at supporting thoughtfulness and ethical soundness by thorough debate about researchers’ involvement. This relates to what we are encouraging caring for (Puig de la Bellacasa, 2017). Our prolonged commitment to telehealth has not only to do with what a telehealth platform does to the relations among healthcare providers representing various institutional care values. In a broader sense, we are interested in the extent to which digitalization of healthcare reassembles care relations and ideas about diligent care. The researcher’s engagement in composing care by drawing actors together that were not formerly connected illustrates that the appropriation of the platform leads to a showdown of the conventional tasks and roles and calls for a renegotiation of responsibilities. Since it is difficult to mobilize resources for this renegotiation, the appropriation of national telehealth services for old persons takes time and calls for continually rethinking what digitalized rehabilitation of old persons living with chronic illnesses is: What is a home? What is a GP? What is a clinic? We would like to draw attention to this renegotiation of tasks, roles and identities implicated by digital platforms. We, the authors, are engaged citizens and healthcare receivers. As such, we would like to see healthcare systems, institutions, specialisms, and care providers that are able to synchronize their efforts and adapt to each other in the interest of health and care.

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Conclusion: Assessing and Enacting New Relations by Drawing Actors Together This discussion about researching alongside and bringing together actors that have not been connected before draws on a case concerning a Danish municipality’s appropriation of a telehealth platform. We define careful engagement as persistent tinkering in a world full of ambivalences and shifting tensions and as a matter of holding together that which does not easily hold together. The researcher arranged various meetings among actors and along the way became actively involved in caring and knowledge production while aiming at synchronizing relations to adapt an innovative technology. This approach raised questions, as we have tried to show, not only about the technology and its users, but also about the researcher’s role in exploring the intervention of this new technology. As we have argued, the telehealth platform affected existing relations among care providers. These findings challenge conventional discourse around ‘platforms’, which, as Gillespie (2010, 2017) shows, too readily assumes that preexisting arrangements and relations will continue undisturbed when a new platform is introduced. These findings contribute to recent academic debate about the performative effects of telehealth and to what extent the provision of telehealth services shape its own outcomes (Stirling & Burgess, 2020, 2021). In the municipality the telehealth platform called for improvisation and composition of new roles and responsibilities. As part of his ambition to compose caring relations by drawing people together, the researcher faced praise, ignorance, resistance, and anger among healthcare professionals. As such, the platform provoked the pressing question: what kind of roles the health center, the GPs, and the lung clinic should be to be able to collaborate in relation to old persons living with chronic illnesses mediated by the telehealth platform? To answer this question the researcher brought together representatives of the different healthcare sectors to discuss how to understand and approach this challenge. The point was to develop and enact appropriate relations as a response to the national rollout of a common platform. Throughout the cross-sector workshop, it became clear that different focus points, care values and performance systems hamper the collaboration that the platform was assumed to support. The cross-sector workshop not only laid bare controversies among the healthcare providers, but also among the participants in the Steering Committee (SC). The researcher had to give up his main research interest in ‘cross sector relations’ to maintain a good relationship with his research collaborators. The researcher’s difficulty in maintaining research integrity and holding all the perspectives and practices together underpins the challenges that health centers, GPs, and clinics also face in relation to the rollout of the national platform. However, it also talks about the difficulty of engaged research. The researcher faced contestations of the research agenda and difficulties of being loyal, not only to the research grant, but also to the many research collaborators in healthcare. With these challenges in mind, we argue that appropriation of telehealth services may need engaged researchers to draw actors together and compose, debate, assess, and enact adapted

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responsibilities and places. Nevertheless, pivotal barriers such as conflicting care values and performance systems will continue to constitute a hindrance for appropriation of cross sector telehealth platforms. These challenges indicate the importance (but also the difficulties) of bringing the parties together so that each party can understand the complexity of various interests as a critical first step to participating in building responsible, collaborative relations among the differences and complexities. Funding This research is part of the project “The Infrastructure of Telecare—Imaginaries, Standards and Tinkering” (INSIST) funded by the Independent Research Fund Denmark (DFF). Grant no. 8091-00015B.

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Region-Syddanmark. (2018). Indhold i telemedicinsk KOL-tilbud i Syddanmark (Content in telemedicine COPD-service in Southdenmark). https://docplayer.dk/105024713-Indhold-itelemedicinsk-kol-tilbud-i-syddanmark.html Stirling, P., & Burgess, G. (2020). How does the provision of advanced, predictive telecare and smart home technology for older people affect its outcomes? (Cambridge Center for Housing and Olanning Research, Issue). Retrieved from the internet Oct 18. 2022. https://www.cchpr. landecon.cam.ac.uk/files/media/downloadtemplate_50.pdf Stirling, P., & Burgess, G. (2021). The promises and the reality of smart, digital telecare in England. Housing, care and support, 24(2), 65–79. https://doi.org/10.1108/HCS-03-2021-0010 Sundhedsministeriet. (2019). Nationalt kvalitetsprogram for sundhedsområdet 2015–2018. Retrieved from https://www.sum.dk/~/media/Filer%20-%20Publikationer_i_pdf/2015/ Nationalt-kvalitetsprogram-for-sundhedsomraadet/Nationalt%20kvalitetsprogram%20for%20 sundhedsomr%C3%A5det%20-%20april%202015.pdf Sundhedsstyrelsen. (2017). Telemedicinsk understøttelse af behandlingstilbud til mennesker med KOL - anbefalinger for målgruppe, sundhedsfagligt indhold samt ansvar og samarbejde (Telemedicine support for treatment services for people with COPD) 1.1). S. T. M. o. Health. https://www.sst.dk/da/udgivelser/2017//-/media/Udgivelser/2017/Telemedicinsk-underst%C3 %B8ttelse-af-behandlingstilbud-til-mennesker-med-KOL.ashx Susskind, D. (2020). A world without work : Technology, automation, and how we should respond (1st ed.). Metropolitan Books/Henry Holt and Company. Van de Ven, A. H. (2007). Engaged scholarship a guide for organizational and social research. Oxford University Press. Vanzandt, S. (2020). Engaged research for community resilience to climate change. ButterworthHeinemann. Vikkelsø, S. (2007). Description as intervention: Engagement and resistance in actor-network analyses. Science as Culture: Unpacking ‘Intervention’ in Science and Technology Studies, 16(3), 297–309. https://doi.org/10.1080/09505430701568701 Zuiderent-Jerak, T. (2015). Situated intervention : Sociological experiment in healthcare. The MIT Press. https://www.statsbiblioteket.dk/au/#/search?query=recordID%3A%22sb_6193134%22 Zaatari, Z., Meari, L., & Joseph, S. (2021). The politics of engaged gender research in the Arab region : Feminist fieldwork and the production of knowledge (1st ed.). I.B. Tauris. https://doi. org/10.5040/9780755645268

Niels Christian Mossfeldt Nickelsen is a certified psychologist and professor of automated care, user involvement and learning at University of South-Eastern Norway (USN). He is also an associate professor at School of Education, Aarhus University (AU). His research centers on implications in healthcare of technological arrangements aiming to qualify professional work and patient care through standardization. He is interested in learning in relation to initiatives aiming to intensify patients’ involvement and responsibility, for example, care robots and self-monitoring. He finds inspiration in ethnographic methods, symbolic interactionism, ethnomethodology and science and technology studies (STS). He received research funding from EU Horizon; The Independent Research Fund Denmark (DFF); The Royal Danish Academy of Sciences and Letters; and The Joint Committee for Nordic Research Councils in the Humanities and Social Sciences (NOS-HS). Paul Duguid is Adjunct Professor Emeritus at the University of California Berkeley. He taught and researched at the Berkeley School of Information for 20 years until 2023. Before that, he was

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researched at the Xerox Palo Alto Research Center (PARC) for 15 years. In both positions, his research focussed on information, its history, and its deployment in different scholarly fields and technologies. He is co-editor of Information: A Historical Companion (Princeton University Press, 2021) and co-author of The Social Life of Information (Harvard Business School Press, 2000; second edition 2017).

Chapter 5

To Care for the Possible: Configuring Care in the Teledialogue Project Peter Danholt, Lars Bo Andersen, and Peter Lauritsen

We don’t know how these things can matter. But we can learn to examine situations from the point of view of their possibilities, from that which they communicate with and that which they poison. Pragmatism is the care of the possible (emphasis in original) (Stengers, 2011).

Above, the Belgian philosopher and science studies scholar Isabelle Stengers, points to a central feature of practice, namely the, in many respects, trivial insight, that we rarely know how and in what ways events will unfold. Nor do we know how many we are and in what ways we may come to matter to each other. Stengers insist on the production of knowledge as a collective practice and as ‘thinking with others’ (Stengers, 2013). Shortly after the young boy appeared on the screen of the social supervisor, he deliberately turned his screen away and instead of the face of the boy, a poster of Cristano Ronaldo appeared on the social supervisor’s screen. The approx. 30 min. long conversation between the two commenced with Ronaldo starring back at the supervisor. Was this an instance of ‘rude’ behaviour or perhaps indicative of a more relaxed and caring relation between the boy and his supervisor?

In this chapter, we want to relate the question of care and careful engagement to ‘thinking with others’ and the unknowability of how things unfold. We want to exemplify and discuss what it might mean to care not for someone or something specifically, but to care for the possible. We suggest that this entails an interest in the becoming of things and being “embedded in the ongoing remaking of the world” (Puig de la Bellacasa, 2017: 28). These concerns are central to anthropology, STS and feminist thinking (de Castro, 2015; de la Cadena et al., 2015; Haraway, 1990). We suggest that how care unfolds and with what consequences cannot be predetermined or stabilised (Latour, 1988; Stengers, 2000b).

P. Danholt (✉) · L. B. Andersen · P. Lauritsen Aarhus University, Aarhus, Denmark e-mail: [email protected]; [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_5

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Our engagement with care in this chapter follows from a combined research and design project entitled “Teledialogue”. The project was initiated by the authors and aimed at strengthening the relationship between placed children and their public case managers through various forms of IT such as videoconferencing, chat and texting. The Teledialogue project envisioned that the children and their case managers could talk more often, learn more about each other and, that the case managers could have greater presence in the everyday lives of placed children, aided by digitally mediated communication. The Teledialogue project was thus to our understanding about care and how caring relations could be facilitated and brought into being in and through sociotechnical assemblages (Latour, 2005). But the project was also about us as researchers being uncertain and modest about how to facilitate and realize care concretely in the project. In this regard, we are shaped by the field of science and technology studies (STS). With STS we are accustomed to acknowledge the agency of practices and actors—human and non-human (Latour, 1988; Pickering, 1995). We know that the success of a fact or an artefact rests not with a few powerful actors, but lies in the hands of multiple others, including those you seek to engage and interest or care for (Latour, 1987). What also follows from STS—besides being modest about one’s own capacity to ‘raise the world’, is the acknowledgement of the expertise and competences of others and the reliance on those others, not only as necessary allies, but equally as others that may qualify, add to and enrich the project and one’s understanding of the very situation one hope to contribute to (de Laet & Mol, 2000; Latour, 1984; Stengers, 2000a). In short, at stake is the question of what care might become. The chapter is structured in the following way. In the next section we relate care to Isabelle Stengers work. Then we briefly account for the Teledialogue project. Subsequently, follows three sections that presents and discusses the matter of care involved in the Teledialogue project. In these sections we relate the matter of care to seminal contributions from the field of science, technology and society studies (STS). We exemplify how care is a relational and emerging ‘object’ and as such a precarious act and event in contrast, to being transcendent and something that can be defined and formalised. We offer these points by revisiting the Teledialogue project and evince care as a heterogeneous assemblage, as installed and as emergent and surprise. We thereby wish to show how care was realised through care for the possible. The concern with care emerges in relation to constructivist and feminist science studies. Constructivist science studies point to how human and non-human agency intersects and forms assemblies that shape practices and the world (Gad & Bruun Jensen, 2009; Latour, 1987, 2005; Pickering, 1995). According to science studies, theories, passions, concepts, power, money, non-human agency, materiality etc. are all potentially, albeit to various degrees, involved in the practices of science—and thus care. Consequently, care is intrinsic to any practice—also scientific practices. Following the arguments made by Harding, Traweek, Haraway and others, science is not a culture of no culture, despite attempts by some to insist on it as such (Haraway, 1990, 1997; Star, 1990). But in common discourse, “good” science is often presumed to be objective, neutral, disinterested and in this perception, care is considered

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antithetical to science and as what science should be cleansed of. But from science studies and the work of among others Vinciane Despret, Isabelle Stengers and primatologist Shirley Strum, the contrast between science and care is challenged and in fact inverted (Despret, 2016; Latour, 2004; Strum & Fedigan, 2000). The work of Despret and Stengers in fact associates care and science and sees care as a premise for science. Their point, based on science studies, is that science entails what Stengers has formulated as: “. . .the invention of the power to confer on things the power of conferring on the experimenter the power to speak in their name” (Stengers, 2000a, b: 89). This means that science is not a matter of simply representing reality, as if this was a trivial matter of observation and description, but a complex, challenging, concrete and historically layered practice of creating a situation or event, in which ‘the object’ can be articulate and express what it would be able to say if it could speak. Here lies the very marvel of science, according to Stengers, namely to construct a situation in which an object is able to give an account, that is not imposed or determined by the constructed set-up of the researcher. This entails two related aspects, namely that the scientist is thoroughly engaged with the object in order to be able to construct a setting that enables it to speak ‘freely’ and second that the researcher is interested in what the object may become capable of. She is interested in extending its capacities, not in how the researcher may capitalize on the object in the form of fame, patents, power, money etc. (Stengers, 2000a, 2017). We want to connect Stengers science and care relation with a project we conducted some years ago. What we will try to exemplify through three different moments of the project is how care was established through a collective of others and the uncertainty and risk implied in this. Furthermore, that in order for care to emerge, very concrete directions had to be made and installed and lastly that how care manifested itself was in unexpected and surprising ways. Our attempt in this chapter is to contribute to empirically specify and make visible the intricacy and uncertainty of care and careful engagement. We hope to contribute both to thinking about care and careful engagement more specifically and disrupt or challenge simplistic notions of care. In Murphy’s words we hope to contribute to unsettle care, not to de-construct care as such, but on the contrary to stimulate our capacity to think and act with care specifically (Murphy, 2015). As such we hope to contribute to an ethology of care. An ethology of care entails developing our capacities to think and act with care as a situated practice not attempt to specify care in general. To articulate and ‘think with’ the difficulties and intricacies of care may help others in their attempt to construct care specifically.

The Teledialogue Project In 2013 we initiated the Teledialogue project. The project was funded by the private Danish Velux research foundation and explored the possibilities for establishing computer mediated communication between vulnerable/placed children and

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adolescents and their municipal social supervisors. The project was based on the idea that a more frequent IT-mediated communication could contribute to a closer relation and greater trust between the children and the social supervisors and thereby better support the children when faced with difficult and potentially life changing events. Seven Danish municipalities, around 39 social supervisors, 50 children/ adolescents of the age 8–20 years participated. Approximately 40 interviews with social supervisors and 30 interviews with the children were conducted and 12 workshops with social supervisors and three workshops with selected children was carried out during the project that ran from 2013–2018. We contacted both small and large municipalities around Denmark and had no specific inclusion criteria or demands, other than their willingness to participate in the project by providing volunteered social supervisors, who then again recruited volunteering children and adolescents. Our role in the project, besides being project owners, was as multifaceted. We acted as a combination of researchers, designers, ethnographers and consultants. Especially one of the authors, played a very active role in supporting and facilitating the project in all sorts of ways the different municipalities. This included frequent follow-up meetings with the social supervisors, IT-staff, management and of course the children. The project funded and equipped the children with tablets they could use for the dialogue with their supervisors. The thematic foci in the data collection were: (1) the relation and communicative challenges between vulnerable children and their social supervisors (2) the challenges and opportunities of using computer mediated technologies in this type of social work. The project was thus in an obvious sense concerned with care—the care for vulnerable children—by supporting their means of communication with the social supervisors. In our research we focus on problems related to information technology and organization. We are informed by and trained in science and technology studies, anthropology, qualitative methods and workplace studies. In this chapter we reflect based on the Teledialogue project as a sort of confessional tale produced in conversation with the concept of care and STS more broadly (Maanen, 2011). In the following we turn to our three main accounts from the Teledialogue project.

Care as Assemblage In their account of the Zimbabwean bush pump, de Laet and Mol emphasise that the strength of the pump is its vagueness and fluidity. The bush pump works not despite, but because it can be picked up and assembled in multiple ways. It circulates because it is able to be assembled and made to work in many places (de Laet & Mol, 2000). In the case of Teledialogue in which we were the proponents, we attempted the Zimbabwean bush pump approach. Based on the relatively common sensical idea that more communication between vulnerable children and their social supervisors would be beneficial for the children and given that the existing rules only required a mandatory meeting every 6 months between the supervisor and the child,

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the project aimed at providing some sort of online platform for communication. We did not have neither a preference for a specific technology nor was the project intended to design and develop a specific platform. On the contrary, our concern was in a bricoleur like manner to support communication via existing available technologies (Büscher et al., 2001). What the project offered was a tablet for the children included on which the software installed was the telecommunication software used by the specific municipality. In order to recruit and include vulnerable children in the project, we started by including municipalities. Seen from our perspective as ‘project-owners’, we wanted that the municipalities volunteered to participate because they saw the potential of the project. We did not pose specific criteria other than their willingness to allocate social supervisors that again on their part found the project meaningful and would like to contribute to it. Between two and five social supervisors of every municipality chose to participate. We then introduced the project to the social supervisors and the many different actors in the municipalities required in order to establish an organizational and technical infrastructure for the IT supported communication between the social supervisors and the children. And then, finally, the children were included—those for whom the whole thing was intended. The social supervisors acted as gatekeepers. They were asked to consider whom of the children they were supervising they would like to include. Those intended to benefit from the project— the children—were thus the last to be included. Care for the children went through a whole chain of other actors. Thinking in terms of care an immediate critique could be that this process seems a rather bureaucratic and lengthy route to the children. One paved by researchers, municipal decisionmakers, technical officers, social supervisors etc. Our rationale was that those best able to assess which children to include are those who know the children best. Those with the professional and personal relation to the children were those in the best position to recruit. Now, we look more closely, to the various aspects and concerns involved in the social supervisors’ selection of the children in order to empirically specify the matter of care. The social supervisors executed a practical reasoning that serves to show the level of complexity involved in the situation and their engagement and concern for the children. The quotes below exemplifies this: Social supervisor: “She (girl 19–20 years) is young and lives at the other end of the municipality and it would be good if she had an extra lifeline to me; if she would be able to reach me. There is this thing about distance, if they [the children] could see us more often than the obligatory two times a year, it would provide some comfort. It is about getting easy access to her. And try to motivate her to move out from the home of the foster family, because she is a very cautious young girl.” ----------------------------Social supervisor: “(girl 16–17 years) It isn’t because of distance. There is only ten minutes’ walk from the institution to my office, but it is in order to come closer to her, and because her mother has just moved to Norway, so it is a good idea to be a little more attentive of her. So that she feels that someone is listening . . .—and she is also good at IT and likes it. -----------------------------Social supervisor: (boy 16–17) He is a rather recent case, very good at IT and computers, and because, often in his case there are some situations, where the mother wants her son back home and then you calm her down and she realizes that it is for the best [that he stays where

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P. Danholt et al. he is]. So, it could be nice when this happens to be able to talk about it [with the son] and then I did not have to go to Aarhus every time. It could add something to the half year meetings we have.”

In the above, we see how inclusion is comprised of concerns about overcoming distances, geographical as well as social, providing comfort, IT-skills, motivating the children/adolescents to move, being able to detect and intervene in relations between parents, and children and so on. Furthermore, we also learned through conversations with the social supervisors, that it was important that the children were in a relative stable and calm life situation, yet still in a situation where they needed support, for instance, if they were going through a transition of some sort. But also, that they were motivated and reflexive and talkative enough to participate. And lastly, that they could be trusted with a borrowed tablet, that they did not trash or sold it. As was explained to us by one of the social supervisors, some children are so troubled that they are unable to have a seat and a conversation without throwing chairs and tables around. Or there are children with mental disorders; or children engaged in criminal activities; or children going through difficult phases with parents, foster families, and social supervisors etc. Those children, presumedly those most vulnerable and in most need of attention and care, was excluded from the project. We thus see a delicate composition of multiple concerns that includes and balances the following: (1) children in a relatively ‘stable’ situation yet in need of support, (2) concerns about the work situation of the social supervisor (3) technical skills of the child (4) concerns about the prospects of the child, (5) intervention in relations (6) ‘risk profiling’ of the child with regards to whether they will be ‘faithful’ to the project (and not trash or sell the tablet). This serves to exemplify the intricate reasoning entailed in the inclusion of the children. The inclusion process that we delegated to the social supervisors for the reasons mentioned above. But it also exemplifies a reasoning that we were unable to do and therefore much better left to the social supervisors. But we also want to point out that the reasoning of the social supervisors is not just a matter of having a ‘close’ and intimate understanding of the children. As is evident their reasoning is not merely a concern with a specific child. Rather their reasoning is comprised of many different ‘matters of concern’ or care as Puig de la Bellacasa would have it (Puig de la Bellacasa, 2017). The supervisors clearly care for the child to be included as shown in point (1), (4) and (5) above, but they also care for themselves as in (2), and then they care for the project as in (3) and (6). These different ways of caring together form an assemblage that cares for a possible future in which social workers and children may have more interaction. Care we thus want to suggest is an interwoven fabric of caring. It interweaves and assembles a variety of matters of care into a specific form of care for the matter at hand. Furthermore, this care assemblage is also comprised of non-caring or a postponement of care. It is evident, that the care assemblage detailed above is conditioned on the exclusion of children perhaps in most need of care. As was evident in the social supervisor’s selection of potential children, some were excluded from the project because their life condition was too complicated and chaotic, or

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because they would immediately trash or sell the tablet. Excluding those children was thus done out of some sort of care for them, namely not to add more concerns or burdens to their already burdensome life, in the form of some it-project initiated by some academics. But in addition, this care for the child was entangled with a care for the project, namely that if one were to include those children then results and knowledge might be jeopardized. The children might not be able to actually partake; tablets might ‘disappear’ and so on. In this respect the exclusion of those children and the practice of not caring for them, could nonetheless also be argued for as being a matter of caring for the realization of a future in which Teledialogue could perhaps at some point help a broader array of children. Caring for the project was thus about caring for the possible and attempting to create a present situation from which a potential future where children were having more frequent interaction with their supervisors was offered the best possible chances. The above serves to exemplify the complexity of care. As suggested by Mol and Law “things are complex when they are related, but don’t add up”(Law & Mol, 2002: 1). We suggest that care is a complex matter. Nevertheless, in the above we have tried to concretize and specify in what ways care is complicated in this particular case.

Care as Installed In their contribution to a sociology of attachment Emilie Gomart and Antoine Hennion explore the formation of passions and “movement in which loss of control is accepted and prepared for” experienced by music amateurs and drug users (Gomart & Hennion, 1999: 227). Instead of locating and explaining passion with reference to the actions and agency of subjects, Gomart and Hennion focus on: “. . . the mechanisms through which this kind of ‘active passion’ is performed” (p. 221). Gomart and Hennion show that ‘getting a high’ or a sublime musical experience is produced through the arrangement or dispositif of multiple elements: places, gear, a ‘state of mind’ etc. The drugs don’t ‘just work’! They must be made part of a dispositif in order to produce ‘the right high’. To ‘loose oneself’ or have an experience of passion is about arranging and becoming available to such an event. It is thus a skilled practice of arranging things in order to lose one self, but accordingly it is not just and simply an act of the human actor. We find such a sociology of attachment relevant to the study of care. In the following we exemplify how care can be approached in the same manner, that is, as a matter of installation. In some of the municipalities the project was terminated or only included one or two social supervisors and a couple of children. In the municipalities where things were up and running, as it is, trouble turned up. Sometimes the technological platforms were causing trouble or the collaboration between IT departments, responsible for the technological infrastructure, and the social supervisors was cumbersome. It was also a challenge for the social supervisors to make appointments with the children concerning at what time the virtual meetings should be held. The working hours of the social supervisors often conflicted with school hours for the

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children and when appointments were settled, then last-minute events occurred (the child’s bike got a flat tire on the way home, the supervisor suddenly had to run out the door and so on). Situations where one party ended up waiting for the other to begin the session and so on. But in some cases, what turned out to be a challenge was a rather trivial aspect, namely that the children and the supervisors found themselves confronted with the problem of having little to talk about. In these cases, the project was faced with a central point from information and communication theory, namely that establishing a channel of communication does not simply result in a sudden flow of communication, as if information is a standing resource waiting to be unleased and flow like dammed water. The social supervisors and children found themselves in awkward silences. In these cases, we decided that we had to stimulate communication. Since, as mentioned earlier, we closely followed the project in the different municipalities and played an active role in facilitating the dialogues, we intervened by giving the social supervisors and the children “assignments”. We provided instructions for them on what to talk about for five meetings. For every meeting, they were given a new assignment they should carry out. For instance, the first assignment was a brief interview guide for the social supervisor to interview the child by. It was phrased accordingly: If one of your friends ask: ”who is this woman from the municpality?”, what would you say? And if your friend ask: “what is she doing?”, what would you say? When do you prefer that she leaves you alone? When do you prefer that she is closer to you? Why don’t you call her more often? Or send her a text or an e-mail? Pretend that you are me, that you are a social supervisor and have to go and visit children. – Why do you have to visit the children? – What are you going to talk with the children about? – Why don’t you just call or send a text? This assignment was designed to stimulate the dialogue between the supervisor and the child, but also have the two parties collectively reflect upon their relation and learn about how they perceive the other. Another assignment was simply that they should keep their conversation going for at least 15 minutes. Yet another assignment entailed that the children interviewed the social supervisors about their daily life and work. After every assignment, we the researchers, met with the social supervisors, where they briefed us about the conversations with the children and we discussed their experiences. In addition to this arrangement of facilitating conversation, we were also, introduced by the social supervisors to the concept of ‘the common third’. The common third is the shared thing, we as conversational partners talk about. An example is the

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weather. The weather is shared and it does not relate directly to ourselves, or our relation to the other with whom we are conversing. It is ‘other’ to communicating parties. Talking about the weather becomes instrumental in producing interaction. In the work practice of social supervisors, the common third is frequently employed in their interaction with children. The social supervisor search for what may interest the child: soccer, horses, motors, pop stars etc. by looking for clues in what they know about the child, how and where they live and so on. Or they go places, take a walk, a drive, do something. Social supervisor: “The best visits are those where you invite the children out, they can easily ‘sidetalk’ [talk about other things than themselves], they are not so confident about the direct dialogue. They like to talk while you are doing something else and then something pops up, something you didn’t expect. For instance, once I was out driving with a young girl then suddenly, she tells me about an abuse, while just sitting there besides me in the car. You need ‘a common third’.”

The common third is thus that by which we come to interact and become articulate. The common understanding of communication as ‘exchange of information’, changes with the common third: communication becomes “relation building” and about the creation of events in which accounts may emerge (Brown & Stenner, 2009). The common third is ‘the other’ through which we come to relate. The common third also ‘surprises’ us and suddenly lead to—or better: leap to—we move from talking about ‘the other’ (horses, soccer, and whatnot) to talking about oneself. The common third is thus central in the interaction between the children and the supervisors, since the children’s issues are sensitive and challenging. Issues that need other—more “innocent” or neutral—issues in order to come forth. The common third is ‘the other’ by which the children may become articulate. In some instances, the Teledialogue project itself also became a common third. In several cases, the social supervisors and the children experienced trouble with using the technical platform. Audio was missing or the webcam was not working. Texts or phone calls was made in order to establish the connection. But consequently these ‘break downs’ facilitated conversation afterwards and gave the parties something to talk about—a common third. What became evident is the trivial insight, that in order for communication to occur we must have something to communicate about. So, in order for Teledialogue to function and become meaningful, not only must IT-support, tablets, parents, foster families, work calendars and school schedules etc. be coordinated and aligned, but social supervisors and children must also have something to talk about. And via such an arrangement care can be said to emerge. In the above we have exemplified care as an installed matter. We thereby suggest to think of care as something that require other stuff or arrangements to emerge. However, that does not mean that this sort of care is superficial, fake or unauthentic. On the contrary, we want to emphasize following Gomart and Hennion, that care can and should be allowed to be thought of as realized by means of arrangements and dispositifs (Gomart & Hennion, 1999; Latour, 2011).

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Care as Surprisal Some of the supervisors also reported that after a while, some of the children showed a somewhat rude behavior, by slightly or manifestly disrupting communication. For instance, one child placed the tablet, so that only the top of his head was visible, while also being turned sideways and quite obviously looking at another screen. Another child turned the tablet towards a Ronaldo poster on the wall and said that the supervisor could talk to him instead, as mentioned in the opening of the chapter. Yet another child opened his mouth wide and placed the tablet so that the social supervisor would see a close-up of his uvula. These different events we found interesting. They were clearly ‘provocations’ and about resisting or being disobedient, while also being humoristic and rather innocent. The children did not refuse the calls by not showing up for instance. No, they showed up, but exhibited a rude, or impolite behavior. What to make of this? They were acts that intervened in the communicative space and in quite inventive and novel ways deflects and interrupts the situation. We prefer to think of them as ways by which the children, on the one hand adhered to the formal set-up, while also unsettling it. We have come to think of this as both a product of the project and as indicative of what the project sought to achieve and as related to care and caring. It is a product of the partial distance and presence created by this type of communication (a type of communication we have all become so accustomed to during the covid-19 lock-downs). A communicative space is created in which we are together in some form or to some degree, but not in the same manner as physical presence. Our point is not to suggest that the latter is more authentic, real or more complete than the former, but just to say that they are obviously different (see also Andersen et al., 2018). What we mean to suggest is that the Teledialogue set-up created a space where such acts of ‘being rude’ and ‘disobedient’ was in fact easier to ‘pull of’ for the children, than it would have been in the physical space of actually meeting their social supervisor—‘the woman from the municipality’. The relation between the child and the social supervisor is characterized by the supervisors having tremendous influence on and power over the lives and wellbeing of the children, which for the children obviously can be troublesome and stressful. With Teledialogue, we argue, the children were provided the opportunity to express some degree of rudeness and disrespect towards their supervisors. The children were given the opportunity to be like ‘regular kids’. To be rude and disobedient towards care persons is a natural behavior for children and adolescents (and everyone else we posit). The space created with Teledialogue thus allowed for, enabled or enacted that type of “natural” behavior. The children became actors that could have a richer and more composite relation to their social supervisors. But the above also lends itself to another point, namely the question concerning what care might look like. We suggest that what emerged in these situations was evidence of a closer, more intimate, more trusting and thus more caring relation between the children and the supervisors. That the children in question was in fact enacting a more trusting relation to their supervisors by the simple fact that they dared to act in rude ways. Their rudeness evinced trust and was thus performative of

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care. Lastly, those events and experiences also allowed the supervisors to experience ‘other sides’ of the children, which the social supervisors appreciated. Those events thus both enacted care and paved the way for care.

Concluding Remarks In this chapter, we have accounted for and reflected on three examples from the Teledialogue project in relation to care. The three examples we have presented and discussed exemplify care as assemblage, care as installed and care as surprisal. We argue that care cannot, but be a precarious risky endeavor and as such always in the hands of others—humans and non-humans alike. We also stress that it cannot be otherwise, that care is not given, but care entails care for the possible. As Michel Callon famously pointed out in his study in which researchers, fishermen, scallops and other actors became associated in networks, there are no guarantees that a given network will hold: the fishermen’s “betrayal” on the day of Christmas eve, made the whole network dissolve (Callon, 1986). Likewise, and following constructivist science studies, the same goes for care: what care is for who and at what point, cannot but be a contingent and emergent matter. However, what we have attempted and consider our contribution to the book, is that obviously and for the same reasons, care may emerge in unlikely and unintended ways. We have exemplified care as assemblage. We saw how care entailed passing agency on to others. Caring for the children and for the project entailed that we, the researchers and ‘project-owners’, delegated it to those working with the children to decide which children to include. Doing so provided an insight into the intricacy of care and showed that care and ‘not caring’ may be seen as layered and folded. The heterogeneity and specificity of care in the particular instance of Teledialogue thus became visible. Then we pointed to care as installed. The relation to constructivist science studies and Latours point: “the more constructed—the more real”, is again pertinent (Latour, 2003: 34). It was illustrated how care may be seen as a product of a dispositif; care as something that require other stuff or arrangements to emerge. Also, we linked this with the concept of the ‘common third’—‘the other’ by which communication and a relation is enabled and depend upon. Lastly, the teledialogue project taught us that care may come as a surprise and take on forms that might at a cursory look seem to be something entirely different. We argued that the children through the Teledialogue project was provided the opportunity to act in ‘rude’ and ‘disobedient ways’. We argue that this is emblematic of a closer and more trusting relation between the children and the social workers—a more caring relation if you like. It also speaks to the point that care may not be easily and immediately recognizable, but is also—as so much else—depended upon a close relation and knowledge of the object and situation at hand. This is a key point of Isabelle Stengers’ plea for interested science. We have provided a confessional tale to empirically specify care on the one hand, while insisting on the fact that care cannot be prescribed and predefined. By giving a

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close and specific account of the matters of care involved in the Teledialogue project, we are not able to provide general recommendations and principles for care and ‘how to’ care. We also consider such an ambition to be both mistaken and contrary to an ethology of care. We see our contribution to an ethology of care as consisting in stimulating our collective thinking about and with care. This is done not through “programmes” or “manuals” for care, but through detailed and specific accounts and reflections that differ and diffract other models of care and thus stimulate the ongoing invention of care particular to and intimately attached to the specificity of a given situation. We hope to have contributed to such an ethology of care.

References Andersen, L. B., Danholt, P., & Lauritsen, P. (2018). Digitization and the distance between case managers and placed children in Teledialogue. STS Encounters, 10(2–3), 37–64. Brown, S. D., & Stenner, P. (2009). Psychology without foundations: History, philosophy and psychosocial theory. Sage. Büscher, M., Gill, S., Mogensen, P., & Shapiro, D. (2001). Landscapes of practice: Bricolage as a method for situated design. Computer Supported Cooperative Work (CSCW), 10(1), 1–28. Callon, M. (1986). Some elements of a sociology of translation: Domestication of the scallops and the fishermen of saint Brieuc Bay. In J. Law (Ed.), Power, action, and belief: A new sociology of knowledge? Routledge & Kegan Paul. de Castro, E. V. (2015). Who is afraid of the ontological wolf? Some comments on an ongoing anthropological debate. The Cambridge Journal of Anthropology, 33(1). https://doi.org/10. 3167/ca.2015.330102 de la Cadena, M., Lien, M. E., Blaser, M., Jensen, C. B., Lea, T., Morita, A., Swanson, H., Ween, G. B., West, P., & Wiener, M. (2015). Anthropology and STS: Generative interfaces, multiple locations. HAU: Journal of Ethnographic Theory, 5(1), 437–475. https://doi.org/10.14318/ hau5.1.020 de Laet, M., & Mol, A. (2000). The Zimbabwe bush pump: Mechanics of a fluid technology. Social Studies of Science, 30, 225–263. https://doi.org/10.1177/030631200030002002 Despret, V. (2016). What would animals say if we asked the right questions? University of Minnesota Press. Gad, C., & Bruun Jensen, C. (2009). On the consequences of post-ANT. Science, Technology & Human Values, 35(1), 55–80. https://doi.org/10.1177/0162243908329567 Gomart, E., & Hennion, A. (1999). A sociology of attachment: Music amateurs, drug users. In J. Law & J. Hassard (Eds.), Actor network theory and after (Vol. 47, pp. 220–247). Blackwell/ Sociological Review. Haraway, D. J. (1990). Simians, cyborgs, and women: The reinvention of nature (1st ed.). Routledge. Haraway, D. J. (1997). Modest_Witness@Second_Millennium.FemaleMan_Meets_OncoMouse: Feminism and Technoscience (1st ed.). Routledge. Latour, B. (1984). The powers of association. The Sociological Review, 32(1_suppl), 264–280. https://doi.org/10.1111/j.1467-954X.1984.tb00115.x Latour, B. (1987). Science in action: How to follow scientists and engineers through society. Harvard University Press. Latour, B. (1988). The pasteurization of France. Harvard University Press. Latour, B. (2003). The promises of constructivism. In E. Selinger & D. Ihde (Eds.), Chasing Technoscience: Matrix for materiality (pp. 27–46). Indiana University Press.

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Latour, B. (2004). How to talk about the body? The normative dimension of science studies. Body & Society, 10(2–3), 205–229. https://doi.org/10.1177/1357034X04042943 Latour, B. (2005). Reassembling the social: An introduction to actor-network-theory. Oxford University Press. Latour, B. (2011). Fetish—Factish. Material Religion, 7(1), 42–49. https://doi.org/10.2752/ 175183411X12968355481935 Law, J., & Mol, A. (Eds.). (2002). Complexities: Social studies of knowledge practices. Duke University Press Books. Maanen, J. V. (2011). Tales of the field: On writing ethnography (2nd ed.). University Of Chicago Press. Murphy, M. (2015). Unsettling care: Troubling transnational itineraries of care in feminist health practices. Social Studies of Science, 45(5), 717–737. Pickering, A. (1995). The mangle of practice: Time, agency, and science. University of Chicago Press. Puig de la Bellacasa, M. (2017). Matters of care: Speculative ethics in more than human worlds. University of Minnesota Press. Star, S. L. (1990). Power, technology and the phenomenology of conventions: On being allergic to onions. The Sociological Review, 38(1_suppl), 26–56. https://doi.org/10.1111/j.1467-954X. 1990.tb03347.x Stengers, I. (2000a). For en demokratisering av vitenskapene. Spartacus. Stengers, I. (2000b). The invention of modern science. University of Minnesota Press. Stengers, I. (2011). The Care of the Possible: Isabelle Stengers interviewed by Eric Bordeleau (E. Bordeleau, Interviewer) [Interview]. http://www.scapegoatjournal.org/docs/01/01_ Stengers_Bordeleau_CareOfThePossible.pdf Stengers, I. (2013). Introductory notes on an ecology of practices. Cultural Studies Review, 11(1), 183–196. Stengers, I. (2017). Another science is possible: A manifesto for slow science (English ed.). Polity. Strum, S. C., & Fedigan, L. M. (Eds.). (2000). Primate encounters: Models of science, gender, and society. University of Chicago Press.

Peter Danholt is Associate Professor at Dept. of Digital Design and Information Studies, Aarhus University. His main research field is Science, Technology and Society studies (STS) with specific focus on IT and digitization. He is vice chairman of the Danish Association of Science and Technology Studies (DASTS) and chief editor of the STS journal STS Encounters. He is currently part of the research centre SHAPE—Shaping Digital Citizenship at Aarhus University. He has published research on healthcare It and selfcare practices; digitization and governance of organizations; data in healthcare and social work and design practices. Lars Bo Andersen conducts research on how digitization and (digital) technologies affects the agency of children and other citizens in welfare societies. Lars is currently a senior associate professor (docent) at University College Copenhagen where he manages the research program Digitization in School and co-leads the Danish National Research Center on Digital Technology Comprehension. Peter Lauritsen is Professor in Information Studies at Aarhus University. He is co-founder of the Danish Association of Science and Technology Studies (DASTS) and is currently heading the research centre SHAPE—Shaping Digital Citizenship at Aarhus University. He has published on STS, surveillance and the digitization of social work.

Chapter 6

Researching Alongside: Engagements Inside and Outside the Academic Domain— A Look Back at Participatory Research on Mutual Aid Myriam Winance

, Marc Bessin, and Claire Ribrault

What is the sociologist’s engagement in the community? (Callon, 1999, p. 65)

It is with this question that Callon examines the place of the sociologist-researcher in the community and the social purpose of sociology. He suggests thinking about the place of the sociologist in terms of attachment and detachment in reference to actornetwork theory (ANT) (Callon & Law, 1995; Law & Hassard, 1999). The role of the sociologist, as with any other scientist, is to be a spokesperson: he or she represents human or non-human entities—hybrid collectives—and in doing so, he or she performs these entities and collectives, and changes reality. The sociologist is an actor who, with and among the other actors, participates in the collective enterprise of social performance. The notions of attachment/detachment connote the idea that the sociologist is an involved participant in a hybrid collective. In describing this collective, he or she gives it existence and reinforces it. In line with the work of Callon and of ANT, several researchers have reiterated this view of the sociologist in the community, based either on the concept of attachment or on that of composition (Bruun Jensen, 2007; Nickelsen, 2009). The concept of social presence (Bessin, 2014), that we use next, can be applied in the same way to researchers. Their presence in the field leads to expectations and needs among the people they work with. Their response, the commitment and care they may put in place impact the study relationship and the research itself.

Marc Bassin was deceased at the time of publication. M. Winance (✉) CERMES3, INSERM, CNRS, Université Paris Cité, EHESS, Paris, France e-mail: [email protected] C. Ribrault Atelier des Jours à Venir, Paris, France e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_6

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This body of work has dealt with the question of “the engagement of the sociologist in the community”, but it has not examined the parallel question— addressed implicitly by Callon in particular—of the participation of the actors in social science research. Paradoxically, this question of participation, even though it has been at the heart of the study of science for the past 25 years, was viewed as an object of research, and not as an opportunity to broaden reflections on the engagement of the sociologist. Some researchers have investigated the participation of lay people in the production of scientific knowledge (Barbot, 2006; Epstein, 1996; Rabeharisoa & Callon, 1999), in technological innovation (Aceros & Domènech, 2021; Akrich, 1993; Lezaun et al., 2016), or in the modalities of participative democracy (Callon et al., 2001). Thus, all this work has examined “the different conceptualizations and valuations of participation” (Nielsen, 2015), without, however, going so far as to question the link between “participation”, “engagement”, and “research in the social sciences”. In this chapter, we are interested in this question of participation, not as an object of research, but as an opportunity to re-examine the question of the engagement of the sociologist, to compare it with that of care, and more broadly, to raise questions concerning the very approach to research in the social sciences: its methods and its aims. To do this, we return to a participatory research project focusing on mutual aid (or care) and conducted with neighborhood residents. We raise questions about the terms of engagement of both researchers and residents, about the work on relationships implied in conducting research “together”, and finally about the way in which this research became a reality and what it produced.

Research on Care with Residents’ Participation The research presented here took place between 2014 and 2022. It was carried out in the framework of a program called “New Patrons—Sciences”, which consists in enabling citizens’ groups to request research on a question relevant to their needs. In practice, “mediators” accompany the formulation of their questions and then request researchers to carry out research on them. In the present research, the “patrons” were 15 residents, aged primarily between 60 and 75 years, affected directly or indirectly (through family members) with chronic illnesses (multiple sclerosis, cancer, etc.) or impairments (deafness. . .). They live in Belfort (50,000 inhabitants), in a neighborhood composed primarily of social housing and inhabited by a culturally diverse population. Most group participants have lived in the neighborhood for some time. Some of them are active in associations that promote activities in the neighborhood. The group was put in contact with the mediator Claire Ribrault, co-author, (hereafter CR) through the intermediary of the director of the socio-cultural center. Over 2 years, CR (living in Paris, 450 km from Belfort) came to work with the group approximately every 2 months to develop a set of questions. These focused on how to live together with multiple sclerosis in their neighborhood. In early 2017, CR asked the two researchers who co-authored this article to continue the research

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project with them. Marc Bessin, a sociologist of care, lives and works in Paris. Myriam Winance, a sociologist of disability, works in Paris and lives in Metz (250 km from Belfort). Our objective was thus to carry out participatory research, involving the inhabitants in each of its stages: defining the problem with them, carrying out the research together, and perhaps finally, discussing the analysis together. For this, we intended on continuing the meetings during which the inhabitants discussed mutual aid. We thought we would equip them with tools, notably methodological tools, and accompany them in doing the research together. However, we did not have a very precise idea of expected results, whether in terms of knowledge or of products. We were engaging ourselves in participatory research, whereas our concept of research methods remained “classic”. We engaged ourselves in that direction but rapidly became aware that the research would not take the form of a classical research project, but would take other forms. Walks and writing workshops were added to the meetings. We were not able to carry out the research stages (definition of the problem, data gathering, analysis). The approach produced little classical academic scientific knowledge, but produced other results. Conducting this research with these residents led us to become closer to them, and to adopt an experiential approach, that is to say to experience mutual aid (rather than constructing a discourse about it). Mutual aid (or care) thus became not only the object of the research, but one of its purposes. To explore this intertwining of research and care and the way in which one and the other are informed (leading to careful engagement on both sides), we developed a theoretical framework presented in the following section that links the notion of “thinking with care” (Puig de la Bellacasa, 2012) to that of social presence (Bessin, 2014). In section “Plurality of Engagements and Work on Synchronization”, we analyze the plurality of forms of engagement and relationship work implied by carrying out a research project together, and in section “Researching Alongside: Research that Takes Multiple Paths”, the plurality of forms (meetings, walks, writing workshops) taken by this research. In conclusion, we return to the implications concerning how we think about the researcher’s engagement in the community versus the participation of citizens in research.

Imbuing “Thinking with” with Social Presence Puig de la Bellacasa (2012) proposes the notion of “thinking with care” to highlight the relational and collective dimension of thinking and knowing. Building on the approach of Tronto (1993), she conceives of care as “a vital affective state, an ethical obligation and a practical labour” (Puig de la Bellacasa, 2012, p. 197). Then, drawing on the concept of situated knowledge, she shows that “thinking with care” “is articulated through a series of concrete moves: thinking with, dissentingwithin and thinking for” (Puig de la Bellacasa, 2012, p. 197). Nevertheless, and similar to the reflection by Callon, this collective dimension is borne by the researcher, who assumes responsibility for creating this collective and its

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heterogeneity. Taking reflections by Puig de la Bellacasa further, we will emphasize the idea that “thinking with” is not borne by the researcher alone, but shared with the residents; each one of the participants becomes engaged in a process of reflection and work on relationships. We will examine the forms taken by this engagement, the modalities of this sharing and what it produces for the research project itself. To do this, we will link the reflection by Puig de la Bellacasa with the notion of “social presence” (Bessin, 2014). The concept of social presence enables describing the nature of care. It refers to the different ways it is possible to be present for the other or with the other, in a given situation or at a distance, physically or intellectually, etc. It “enables addressing the nature of engagement in the activity, which can occur on several fronts at once” (our translation) (Bessin, 2014, p. 4). It thus makes it possible to consider issues of care from a temporal perspective, which does not reduce it to either the interaction or to the present moment, but conceives of its existence outside the interaction and beyond the present. Indeed, presence is sometimes performed through absence. Presence can be “simple presence” or “intense presence”, it can be expressed as protection or as surveillance. It is plural, temporal, and not devoid of ambiguities. Related to this notion of social presence, care can then be redefined as a relationship to time; time understood not as a succession of temporal sequences (chronos), but as synchronization and adjustment to the temporal situation in all its fullness (kairos). Thus, care is a matter of kairos, of the right moment, this being the “consequence of a judgment made in a given situation, taking into account the actors, the norms and the values that are involved in it, but also the consequences implied by the action, at all levels. It is about relationships with others, anticipation and responsibility, while being determined by availability.” (Bessin, 2014, p. 4). Taking into account this notion of social presence, and the way these social presences were manifested and materialized during our research, will allow us to explore the temporal and relational dimension of “thinking with”. We will describe the way “thinking with” was borne by the group, in which each participant was involved in various ways. We examine the way “thinking with” involved work on relationships. This group then materialized into several “we”, each one bearing part of the research, and referring back not only to “thinking with” but also to “thinking alongside”, echoing the “being alongside” of Latimer (2013).

Plurality of Engagements and Work on Synchronization As noted earlier, STS researchers advocated that everyone, researchers and citizens alike, participate in the same reflective and performative project. But they understood this participation in a distinct way, speaking on the one hand of the engagement of the researcher in the community, and on the other of the participation of the citizens in a research project. However, this distinction does not allow us to describe the various ways of engaging in our project. Here we describe these different ways, intentionally using the same term (engagement) for researchers and residents. As

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Latimer (2013) argues, focusing on what we share or what we have in common allows us to rethink differences and how these differences coexist in a community. We describe four modes of engagement: join the community, get involved, facilitate, explore. Each of these expresses a dimension of engagement in the community and a dimension of participation in the research project. Emphasizing this plurality of engagements will lead us to consider, from a new perspective, the differences that exist between people (researchers, participants) and the work necessary to maintain a “we” or rather more than one “we”: the custodians of the project.

Join the Community To be part of the community is to both make research part of the community and to make one’s own engagement to research part of the continuity of other civic commitments. The research allows the residents to work on the social relationships that make up the neighborhood: to create them and to support them. “And I continue to come because I learned a lot and I think that human and friendly relationships are important when one is ill.” (a resident, writing workshop, December, 2020). For us as authors, doing research with the residents is a coherent part of other civic activities in our respective life spaces. For everybody, this way of being involved thus depends on marshalling other experiences of commitment (activist, political, volunteer, etc.), past or present. For example, after mass at their former parish, a participant meets an acquaintance and invites her to participate in the research. These experiences of commitment also serve as a resource for thinking about mutual aid and then working on it locally, in the neighborhood.

Get Involved Getting involved, or finding oneself involved, refers to joining the project on invitation and letting oneself be carried along without perhaps knowing “what one is getting involved in”. Today, I met Claire and Emmanuelle1; they suggested I participate in a project of the new “patrons” with a group of resident-researchers in Belfort. They are enthusiastic, the subject interests me and I tell them I’m game. Afterwards, I realize that Belfort is far from Metz and Paris. Too late. I answered that I would go. (Myriam, field notes, March, 2017). I first came because I’d heard [about this group] from members of the Madrilène [association] (a resident, writing workshop, December, 2020).

1 Emmanuelle Busch is a psychologist who participated in the project between 2016 and 2019. She was a facilitator in some of the writing workshops and carried out interviews with the residents.

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This way of getting involved is similar to the position of someone receiving aid, a position of receiving a proposal. Engagement in this case can denote a more passive posture: people are there, present at meetings, without taking part in them other than through their simple physical presence. Thus, such a resident comes erratically, often arrives late and leaves at any time without explanation, never says anything, and always seems “elsewhere”. This simple presence however leads to several concerns that others talk about. For example, during a meeting, another resident explained that this resident lives with a colony of cockroaches in her apartment, without the social housing landlord doing anything about it. But engagement can also indicate an active potential when the person joining accepts the invitation to enrich the research with his or her own experience and expertise. This can be the case for researchers, such as Myriam above, or for certain residents who, ill themselves, have high expectations concerning “the research” and the way it might tangibly improve their daily lives. By marshalling their experience of the disease, their presence then becomes influential, focusing the attention of the group, giving it food for thought and pushing it to act.

Facilitate To facilitate is to commit to doing the work necessary to keep a group of very different personalities together and moving forward. Then I came back because I met different ‘meeting facilitators’ who helped us understand this disease from different perspectives. (a resident, writing workshop, December 2020)

To facilitate is to engage in working on relationships to enable each participant to find their place in the project and to involve themselves in their own way. To facilitate is to encourage and support the work of adjustment (Winance, 2010) to each other, which each participant must do so that collective activity is possible. This adjustment work requires attention to each person and to the relationships between all. This attention takes various forms: ensuring that people speak in turn and that everyone has a chance, reformulating people’s comments, but this can also be done through soothing or comforting words, sometimes through humor, through small gestures such as picking up a cane or helping a wheelchair get through. Finally, to facilitate is also to guide the group towards its goal: carrying out the research.

Explore Exploring is searching with curiosity. It means asking questions and investigating possible answers. I keep looking, hoping to find what I am looking for. [. . .] Besides, I wonder: ‘What am I looking for?’ ‘and what am I looking for?’ and something tells me ‘continue looking!’, and without questioning it, I search, I search as I go along, search, search without getting tired,

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and I rest from time to time. And then I start again to search, do I know what? Keep searching, keep searching like a little bird from branch to branch, and keep searching, a day will come. (a resident, writing workshop, October 2020).

To explore is doubtless to want to understand one’s own experience but also to identify a problem that concerns more than oneself. It is to engage in a process that will hopefully produce answers, in one form or another, for oneself and others. While researchers are in some ways present for that purpose, the participation of everyone in this process depends on this manner of being engaged. Each person participates because they are curious, wants to know, to understand. Everyone, at one time or another, constructs a line of argument, analyses a situation, conceives of how to carry out actions, and some of these ideas will be adopted and organized into and by the research project.

Adjusting and Synchronizing Social Presence to do Research Together The analysis of these four modes of engagement makes it possible to overcome the a priori distinction between engaged researchers and participating citizens. Whether we are researchers or residents, we have all adopted these ways of being involved in the process at one time or another. In this sense, there are not researchers engaged in the community on one side and on the other, residents participating in a research project. Rather, as argued by Callon, there are people participating in a reflective and performative enterprise, while being involved and invested in multiple relationships. But it is equally important to understand and take into account the differences that exist between people. Living in the neighborhood or not, giving aid or receiving aid, being a professional researcher, etc. are differences that, according to time and situation, can lead to misunderstandings and conflicts. Thus, the residents participated in a research project as neighborhood residents. Moreover, they adopted the term of residentresearcher (Bories et al., 2018) to emphasize this dual grounding. Conversely, as mediator and researchers, we lived far from the neighborhood. We went there intermittently, for occasions devoted to the research. Our engagement was above all a physical and temporal absence. This difference in residency sometimes led to incompatibilities, as when residents forgot to come to a meeting because they were occupied by other daily activities. Furthermore, the differences between the engagement of each person can cause tensions. For example, one dedicated resident, who actively promoted the research project (inviting new people to join the group, rounding up people for meetings), reproached other participants for their passivity, or complained during meetings when some participants had not notified they would be absent. Last but not least, for us, the authors, the research constituted our professional activity. We drew from it solutions for interpreting situations and writing about them that were not available to the residents. On this topic, some

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authors have spoken of a hermeneutic injustice (Godrie & Dos Santos, 2017). The points of view of the resident-researchers and those of the researchers can thus be discordant, with the former experiencing difficult situations (e.g. health issues, modest incomes), and the latter understanding these situations in reference to a sociological framework divorced from experience. None of these differences justify distinguishing between the residents and the researchers in terms of engagement or participation. On the other hand, they do suggest taking into account work on relationships, to make possible the common enterprise to which everyone is committed—the research project. This work was done by all the participants. Carrying out the research together required working on the synchronization and adjustment of the social presence of each person. When we came to Belfort, we shared moments of conviviality with the group (sharing meals or a walk). For us, the authors, these were ways of sharing the experience of the resident-researchers’ neighborhood. In addition, during the meetings, those present called to mind those absent, giving hypothetical reasons for their absence or mentioning their experience. In doing so, they preserved the place of those absent and enabled them to participate. Between the moments of group activities in Belfort, being present took other forms: photos exchanged by email, letters sent by post, encounters in the street among residents who reminded each other of the date of the next meeting. Finally, synchronizing social presences sometimes meant leaving each person the time to change places, both literally and figuratively, in order to overcome the numerous differences. Sometimes it meant being patient with someone who is hard of hearing, of helping someone move an armchair. But is also meant taking the time to not understand each other, to set aside the tensions produced in explaining oneself, putting oneself in the other’s place, questioning oneself, and getting past misunderstandings and disagreements. From this perspective it is notable that the inhabitants chose, within the framework of the project, to walk together (see the following section). Synchronizing social presences corresponded to care—as work on relationships—and was carried out by all the participants. This work allowed the emergence of a group, of a ‘we producers of research’. The emergence of this ‘we’ did not erase the differences and divergences that comprised it. Moreover, it coexisted with other ‘we’, composed according to the different forms of presences-absences. The ‘we authors’ associates the presence of the mediator and the two researchers—and the absence of the resident-researchers—in an academic space-time in which we write this article. The ‘we resident-researchers’ are associated in the space-time of the neighborhood, where mutual aid is experienced on a daily basis. And when, in the following section, we go into the details of the research, other ‘we’ will also appear, such as the ‘we researchers’, the ‘we walkers’... It is these different ‘we’ that lead us (‘we authors’) to question the forms this research has taken and its collective dimension: if a ‘we who produce research’ exists, and if it also coexists with other ‘we’, what did this research consist of: what did we search for together? How did this ‘searching together’ materialize? What did it produce?

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Researching Alongside: Research that Takes Multiple Paths The research process took shape in three forms combining reflection on and experience of mutual aid: discussing, walking, and writing. These forms varied, with not all participants joining in all of them, or not regularly. We describe these three forms and return to the way they shape “thinking with”, but also what we will call “thinking alongside”. “Thinking with” refers to the idea of common thought developed by a heterogeneous group; “thinking alongside” to thought that connects different paths.

Discussing The first form consisted of meetings that brought together all those engaged in the research project. Their initial aim was to co-construct the research. During these meetings, we reflected on mutual aid based on the experience of the inhabitants: everyone asked questions, put the other’s experience into perspective or suggested an interpretation. For example, several sessions were devoted to difficulties in communicating pain. Indeed, pains that are specific to multiple sclerosis are difficult to make visible to others. Together, the residents brought up images to express the pain and analyze the frustration of not being understood. During these discussions, we used academic tools (e.g. excerpts from publications, presentations by the researchers on research methodology. . .). But exchanges were usually unpredictable: during numerous digressions, the inhabitants expressed what was important to them and discussed it as a group. On the basis of these discussions, we, the authors, suggested to the residents to focus the research on the questions: what are the forms of mutual aid between persons with progressive chronic illnesses in the neighborhood? How do socio-demographic changes in the neighborhood transform mutual aid? We invited the residents to begin a survey. We agreed with each of them on a “mission” for them to carry out between two meetings (interview an ill neighbor, make a map of a walk in the neighborhood, describe one’s own experience). For several reasons, they did not carry out these missions. We were puzzled at this, no longer really knowing how to conduct the research so that it remained participatory. Nonetheless, this perplexity had two concrete effects. First, because we felt they were important for the resident-researchers, we continued the meetings, discussing the different aspects of mutual aid in their daily life. Second, the researchers decided to conduct individual interviews with the resident-researchers. These interviews had a dual objective: answer the research question on mutual aid in the neighborhood and understand what this research project meant to them. For us, these interviews were a way of trying to understand “what’s going on” (Hennion & Sintive, 2016) in this research project that was escaping us. However, and we will come back to this below, it was in the continuation of group discussions and in the individual interviews that we gradually understood that, on the one hand, under the

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impetus of the resident-researchers themselves, the research had taken on a shape that deviated it from academic paths, and that on the other hand, “researching with” is also, and especially, “researching alongside”.

Walking During a meeting in early 2016, a resident-researcher with multiple sclerosis noted that for her, “mutual aid was being accompanied for a walk”. Walking had become difficult and she no longer dared walking alone. The idea then arose of organizing walks every other week in the neighborhood to walk with her. These walks brought together some of the resident-researchers. They constituted a space for embodied mutual aid and situated reflection. During meetings, the resident-researchers who participated in the walks (‘we-walkers’) referred to them as a moment when they experienced illness—their own or the effect illness had on the other—and the diverse dimensions of mutual aid. Walking together requires adjusting the pace of the walk to the condition of each person, and thus learning several things: to express needs, what causes discomfort or what feels good, to hear what is being expressed, to offer, ask for or accept help. These walks were thus an opportunity for individual and collective research on ways of giving mutual aid and on the implicit values, difficulties and tensions that underlie the work of mutual aid. For example, one resident-researcher wrote about the walks: – – – –

Easy to organize laughing and smiling it’s a time for asking questions, to talk about the news better understanding of ill persons and the illness: in the meetings I hear what they say, in the walks I see what they do. It’s different. – Surprised by their satisfaction! (discussion notes, Claire, 16 April, 2016).

Hearing and seeing are two different modalities of understanding. Their potential in terms of learning and knowledge production is different, as emphasized by this participant.

Writing The third form of research consisted of monthly writing workshops. They were set up in October, 2017 at the suggestion of a resident-researcher, and facilitated by a writer living in Belfort. Following her departure, Claire and Myriam accompanied the resident-researchers by sending writing exercises that they did together. Like the walks, these workshops turned out to be a central activity during which the residentresearchers organized their notes concerning some of their questions on illness, the neighborhood, and mutual aid, as in the following excerpt, for example:

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She doesn’t want anyone touching her things. Difficult in this case to do the cleaning. It hurts me to see her listless. She was so active. She already had a very disagreeable temperament that has now been transformed into constant anger. I feel sorry for her companion, who has to put up with her rants, her insults, etc. I’d like to give her more support, but how? I get angry because social and medical services don’t appear to see the same things I do. On the other hand, if someone doesn’t want to be helped, should we give up?” (an inhabitant, writing workshop, January 2018).

Writing supports the resident-researchers in their work of reflection, leading them to describe and analyze their own experience. Listening to texts written by others extends this work of reflection. The residents gave us (the researchers and mediator) their texts, at our request, but also because these workshops were, for them, an integral part of the research project. And we were surprised to discover reflective, well-written texts, whereas in meetings, the resident-researchers often expressed their difficulties in reflecting, writing, observing. . .as soon as we imposed a formal framework on them, one a little closer to a scientific format.

Researching with, Researching Alongside Reconsidering the forms taken by the research enables us to explain the shift from the notion of “thinking with” to that of “thinking alongside”, or even “researching alongside”. During meetings, the perspectives of each person were added one to another, they coexisted and responded to each other. Together, we produced common representations. We adopted positions that enabled us to search together, such as distancing ourselves from our experience, avoiding moral judgements, questioning and exploring an experience. These positions led each person to think with the other, to the extent the other made them think, made them move, changed their way of looking at things. In this respect, it was a form of “thinking with” which was produced, and more specifically, of “searching with”. However, even if we searched one with the other, each one followed their own particular line of thinking as well, each one understood the research in their own way. The notion of “alongsidedness” (Latimer, 2013) allows us to conceive of these partial and intermittent connections. Latimer contrasts this way of being together side by side, being alongside—which enables the coexistence of differences—with hybridity as a totalizing form of “being with” (Latimer, 2013, p. 77), which assimilates these differences or even overlays them in a way. The writing workshops illustrate these connections between paths of individual thinking: each person wrote according to the same guidelines, following the line of their own thinking. The texts were then shared, responding to each other while remaining personal and independent one from another. Another written example of “researching alongside” is a summary booklet (Bessin & Winance, 2021) that we, Marc and Myriam, wrote for the resident-researchers to describe, not “the” approach to research, but “our” approach to research, from our position as researchers. In this

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booklet, we, the researchers, present a reflection on mutual aid drawing on results of the research (individual interviews, field notes, texts from the writing workshop, blog of the walks). The booklet is organized around themes (ordinary relationships, communication in mutual aid, temporal aspects of care, otherness in care) that we analyze using theoretical notions of the social sciences. We continued thinking about mutual aid from our side, including forms of presence of the resident-researchers (their experience enriched our analyses and we addressed ourselves to them in our writing). We are indeed then in an “alongside” research approach, echoing what Latimer wrote: “being alongside can involve cooperating with one another, even working together, but not with the same materials and not necessarily to the same ends” (Latimer, 2013, p. 80). Finally, talking about this approach in terms of “researching alongside” emphasizes the temporality of the collaboration. The temporality of a research project is both long and finite, which raises two questions: that of the interference between research and daily life, and that of the end of the project. Indeed, first, given life’s unpredictable nature, partial and intermittent connections may become more and more rare and limited. Thus, between 2019 and 2021, the group became fragile, absences at meetings became more frequent, the writing workshops ceased. Aside from the Covid-19 pandemic, there were several reasons for this. One person moved away, two people died following illness, another had health problems, and conflicts—unrelated to the project—occupied more and more of a place in the group. In the face of these obstacles, the relationship work done by each one of them was no longer sufficient to maintain a common project. The second question concerns the way the project could terminate. In 2021, the project finished for us authors. The booklet we wrote constitutes a conclusion of this work. The meeting during which we distributed it to the resident-researchers was the last for us. However, we noticed it was difficult for the resident-researchers to understand this “last time”. As we interpreted this, it was not so much the end of the project that troubled them but rather the idea of not seeing each other again. This led us to question why the end of the project should coincide with the end of the relationships. This raises the question of the evolution of engagements, and probably also that of the disengagement. A careful engagement, when it concerns research— which has a finite duration—should perhaps be planned with a careful dis-engagement. And to the extent that it was we, researchers and mediator, who guided the research and its conclusion, thinking about this disengagement was our particular responsibility. Doubtless, this careful dis-engagement depends, like the entire undertaking, on work on synchronization and adjustment of social presence. Doubtless it depends on a way of acknowledging the relationships performed by research, and caring for them beyond the research itself. In 2022, we went to Belfort for the last time. This meeting was the occasion to show that each of us valued the relationships that had been forged, and that they should continue beyond the research.

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Conclusion In what way does examining the question of participation by citizens in social science research transform the way we look at the engagement of the researcher in the community? This was the question at the heart of our chapter. To answer this, we explored the plurality of engagements that characterized the researchers as well as the residents in our research project. There were not engaged researchers in the community on one hand and participants in a research project on the other, since for both, participation in research meant engagement in the community, and vice versa. As suggested by Bellacasa, our research showed that, in a certain way, “Thinking with should always be living with” (Puig de la Bellacasa, 2012, p. 297). Dissociating life and research would be an artifice because in practice, they merge. Holding together all these multiple engagements to create a group required working on relationships carried out by all the participants. We analyzed this as a work of synchronization and adjustment of the social presence of each person to the other. This relationship work, done by everyone, transformed the engagement of each one into a careful engagement, which may be defined as the ability to marshal the appropriate presence at the appropriate time. Emphasizing social presence and the work of synchronization necessary for carrying out a shared research project led us to introduce the notion of researching alongside. This refers to the idea of shared research that is carried out using different but shared pathways and that engenders them as well. This idea limits the observation by Puig de la Bellacasa cited above. Indeed, while the research was an experience of “living with”, this experience was intermittent, temporary and partial. We clearly did something together and we worked on the relationships that united us, in and through the research project, but what was performed was neither “a life with”, nor a common or shared idea, nor even scientific knowledge. What was produced is in the order of a diversity of connected thoughts, with uncertain effects, more or less understandable and only some of which took on material form. Researching alongside residents took us out of the academic scientific space, with its norms for writing, knowledge production and dissemination of this knowledge. It shifted our engagement by taking it out of this academic space and obliging us to invent other forms of production and ways of giving value to the research that were probably more local, more ephemeral, and less ambitious. The meetings, the walks, the writing workshops, the booklet, these are the modest and doubtless prudent forms of a research project carried out in a community. Acknowledgements We wish to thank the inhabitants of Belfort for their welcome and their commitment during 8 years, as well as the Cultural and Social Residents-Bellevue center, and the association The Madrilène that hosted the group meetings. We would like to thank Emmanuelle Busch for all the data she sent us. The programme Nouveaux Commanditaires Sciences benefitted from support by the Fondation de France, IRIS and CERMES3, and was set up by the Atelier des Jours à Venir. We also thank Jon Cook for the translation.

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References Aceros, J. C., & Domènech, M. (2021). Private issues in public spaces: Regimes of engagement at a citizen conference. Minerva, 59(2), 195–215. https://doi.org/10.1007/s11024-020-09423-4 Akrich, M. (1993). A Gazogene in Costa Rica. An experiment in techno-sociology. In P. Lemonnier (Ed.), Technological choices. Transformation in material cultures since the Neolithic (pp. 289–337). Routledge. Barbot, J. (2006). How to build an “active” patient? The work of AIDS associations in France. Social Science & Medicine, 62, 538–551. Bessin, M. (2014). Présences sociales: une approche phénoménologique des temporalités sexuées du care. Temporalités. Revue de sciences sociales et humaines (20). Bessin, M., & Winance, M. (2021). Qu’est-ce que l’entraide ? Comment s’entraider? https://hal. archives-ouvertes.fr/halshs-03500984v1. Bories, O., Ribrault, C., Causse-Kaposztas, F., Houte, S., Bouhet, E., Barbeau, E., & Faure, C. (2018). L’habitant chercheur: nouvelle figure des sciences impliquées. Projets de paysage. Revue scientifique sur la conception et l’aménagement de l’espace (18). https://www. projetsdepaysage.fr/l_habitant_chercheur_nouvelle_figure_des_sciences_impliqu_es#citation Bruun Jensen, C. (2007). Sorting attachments: Usefulness of STS in healthcare practice and policy. Science as Culture, 16(3), 237–251. Callon, M. (1999). Ni intellectuel engagé, ni intellectuel dégagé: la double stratégie de l’attachement et du détachement. Sociologie du travail, 41, 65–78. Callon, M., Lascoumes, P., & Barthe, Y. (2001). Agir dans un monde incertain: essai sur la démocratie technique. Éditions du Seuil. Callon, M., & Law, J. (1995). Agency and the hybrid collectif. South Atlantic Quaterly, 94, 481–507. Epstein, S. (1996). Impure science. Aids, activisme, and the politics of knowledge. University of California Press. Godrie, B., & Dos Santos, M. (2017). Présentation: inégalités sociales, production des savoirs et de l’ignorance. Sociologie et sociétés, 49(1), 7–31. Hennion, A., & Sintive, C. (2016). Un cahier qui pourrait s’intituler “ce qui se passe” à Calais. PUCA/PEROU. En ligne : [urbanisme-puca.gouv.fr/IMG/pdf/un_cahier_qui_pourrait.pdf] Latimer, J. (2013). Being alongside: Rethinking relations amongst different kinds. Theory, Culture & Society, 30(7–8), 77–104. https://doi.org/10.1177/0263276413500078 Law, J., & Hassard, J. (1999). Actor network theory and after. Blackwell. Lezaun, J., Marres, N., & Tironi, M. (2016). Experiments in participation. The handbook of science and technology studies (4). Nickelsen, N. C. (2009). Rethinking interventionist research: Navigating oppositional networks in a Danish hospital. Journal of Research Practice, 5(2), M4–M4. Nielsen, K. D. (2015). Caring for participation in STS: From empowered patients to ghostbusters. EASST Review, 34(2). https://www.easst.net/article/caring-for-participation-in-sts-fromempowered-patients-to-ghostbusters/ Puig de la Bellacasa, M. (2012). ‘Nothing comes without its world’: Thinking with care. The Sociological Review, 60(2), 197–216. https://doi.org/10.1111/j.1467-954X.2012.02070.x Rabeharisoa, V., & Callon, M. (1999). Le pouvoir des malades. L’association française contre les myopathies et la Recherche. Presses des Mines. Tronto, J. (1993). Moral boundaries: A political argument for an ethic of care. Routledge. Winance, M. (2010). Care and disability. Practices of experimenting, tinkering with, and arranging people and technical aids. In A. Mol, I. Moser, & J. Pols (Eds.), Care in practice. On tinkering in clinics, homes and farms (pp. 93–117). Transcript Verlag.

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Myriam Winance is a sociologist at CERMES3, INSERM. Her research focuses on the issue of disability. Her objective is to analyse the way this notion is defined in our society, through policies and institutional facilities on the one hand, and through the practices and experiences of people on the other. Her researches combine a socio-history of disability policy, the sociology of health and the sciences and technology studies. They examine notions of care, of the person, of the body, of disability. Initially, she was interested in the question of “prostheses” and the evolution of disability policies. Her recent research has been on the history and daily life of persons living with several impairments, in two studies: 1/ the emergence of new categories in French policies, to name those persons; 2/ the making of the ordinary life by families, one of whose members has multiple disabilities. In relation to these research activities, she is developing methodological thinking concerning qualitative research in the field of health. She is interested in the question of interdisciplinarity and that of participative research. She explores the different forms of research by examining the political and scientific pertinence of each one. Marc Bessin was a sociologist at l’IRIS. His initial work focused on age and life courses, which subsequently led him to mobilize a temporal analysis in all his research fields. He worked on biographical temporalities and in particular on family calendars. He analysed support practices in the health, judicial and social fields. By working on prison care, social work or parenthood, he focused his analyses on the temporal and gender issues of care, inherent to all these situations. He developed a sociology of social presences. This also leaded him to reflect, from an epistemology perspective, on the presences of researchers: presence in the world (the issue of citizen sciences), presence in the field of investigation (the ethical issue) and presence in the academic world (the political issue of deontological positioning). Marc Bessin passed away in September 2023. Claire Ribrault holds a PhD in natural sciences. In 2012 she co-founded L’Atelier des Jours à Venir (www.joursavenir.org), a small non-profit company dedicated to sharing the research process with a diversity of actors and supporting reflexive research practices. Its activities include teaching & life-long-learning training, and facilitation of participatory research. In particular, upon request of the Fondation de France, they developed a participatory research program named Nouveaux Commanditaires—Sciences. This program allows groups of citizens to request a research on a topic that matters to them, and to engage together with researchers into a research process. Claire Ribrault has developed expertise in facilitating and advising on participatory research and is now working as a free lancer. She has taken part to “Polyordinaire”, a research project that involves parents of people with PIMD.

Chapter 7

Fostering Inclusive Technologies: Being Alongside Care in the Workplace Mike Grijseels, Barbara Regeer, and Teun Zuiderent-Jerak

Inclusive Employment as a Matter of Care People with disabilities face hardship in both finding- and keeping jobs, as reflected in low employment rates (Ebuenyi et al., 2019; Kiesel et al., 2019). When seeking employment, they can face stigmatization and hiring discrimination (Kuznetsova & Yalcin 2017; Parker Harris et al., 2014). When employed, discrimination, prejudice and negative stereotypes can cause further exclusions (Friedman, 2020; Snyder et al., 2010). Through these exclusions, people with disabilities are denied the perks of employment like a sense of belonging and financial security (Nota et al., 2014; Trezzini et al., 2020). Increasingly, technologies are seen as potentially beneficial to the inclusion of people with disabilities in the workplace (Syurina et al., 2017; Roulstone, 2016; Foley & Ferri, 2012). Accordingly, more policy initiatives explore this potential and experiment with technologies for inclusive employment (European Commission, 2019; Mji & Edusei, 2019; Goggin et al., 2019). Simultaneously, scholars suggest that using technology for inclusion does come with its risks, like; the possibility of constructing new forms of exclusion as a consequence of the digital divide (Goedhart et al., 2021; Macdonald & Clayton, 2015), the possibility of exacerbating existing social exclusions (Kritikos, 2018); and technology being inadequately designed for the needs of people with a disability (Harris, 2010). These risks highlight how technologies rarely function in a vacuum but instead work in interaction; people play a role in defining, achieving or altering its function. Thus, in aiming for a desired function, in our case inclusion, it is crucial to pay attention to how and why people form an assembly around a technology (Grijseels et al., 2021).

M. Grijseels (✉) · B. Regeer · T. Zuiderent-Jerak Athena Institute, Vrije Universiteit, Amsterdam, The Netherlands e-mail: [email protected]; [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_7

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In a plea for matters of concern, Latour (2004, p. 232) gives some direction and proposes we study how people, things and facts assemble and what values and commitments they enact in specific arrangements. However, people with a disability are often excluded from- or underrepresented in such arrangements. Therefore, it is critical to attend to who is represented and what power dynamics are reproduced when studying inclusion in the workplace (Dombroski, 2018; Galis & Lee, 2013). Engaging with care is suggested as a way to open up productive positions for people that remain invisible in existing arrangements (Tironi & Rodríguez-Giralt, 2017; Martin et al., 2015). Attending to those marginalized in arrangements and to the normativities arrangements produce involves a move from ‘matters of concern’ to ‘matters of care’. de la Bellacasa (2011, p. 90) describes matters of care in three dimensions; “an affective state, a material doing and an ethico-political obligation”. First, it extends the situated and emergent sensibilities of matters of concern (Latimer, 2013). Instead of studying how people, things and facts assemble, it studies how caring relations can flourish in an assembly. Flourishing is not only achieved through affection; Michelle Murphy suggests that care can also flourish through discomfort or disruptiveness (Murphy, 2015). Second, it underscores the importance of looking at “specific individuals facing specific problems in specific circumstances” (Tironi & Rodríguez-Giralt, 2017, p. 92). This extends the notion of matters of concern, allowing for attending to a certain individual or problem if needed. This is especially important when studying people that remain invisible in existing arrangements. Third, posing care as an ethico-political obligation opens up room for analysing the speculative commitments people in an assembly hold (Jerak-Zuiderent, 2020, p. 191). Their commitments matter and engaging with care becomes a “speculative commitment to neglected things” (de la Bellacasa, 2011, p. 100). To effectively help strike a balance between what emerges in a situation and the commitments and intentions people bring to a setting equally implies accounting for the commitments that we, as scholars, bring along when studying a matter of care. Aryn Martin and colleagues therefore distinguish two layers of care; the care circulating out there in the workplace and the care we as researchers bring to a situation (Martin et al., 2015, p. 2). These layers reflect the notions of care in practice (Winance, 2010) and critical care (Martin et al., 2015) respectively. Surfacing the care in these layers can open up possibilities for collective reflexivity, and may thus help mitigate the risk of reproducing existing exclusions (Yuille, 2021). Lindén and Lydahl (2021) suggest that these layers need to be kept in tension when engaging with care. Myriam Winance’s (2010) take on care can help develop this concept of tension. She describes care as shared work between carer and cared for, which translates to an assembly of people who are both dependent and independent, attached and detached, carer and cared for. The role researchers can take in these layers and tensions is one that is both situated and critical, engaged without being sentimental. It involves interacting with practices through a mode of entwining representing and intervening (Zuiderent-Jerak, 2015). Researchers become part of the problem-framing and the solution-exploring work. Consequently, their commitments and actions matter,

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they can; “take their concerns about the practices they are involved in seriously without violating their equal attachment to reflexivity, unpredictability, and situatedness.” (Zuiderent-Jerak, 2016, p. 73). This role is in contrast with a past where; “description reigned over prescription, and those who took up advocacy positions were often accused of normativity.” (Martin et al., 2015). By taking a more experimental caring role, researchers help care in both layers to become an act, something that is done and needs to be tinkered with constantly (de la Bellacasa, 2011, p. 90). In this chapter, we explore the potential of matters of care, in the form of careful engagement, for productively balancing speculative commitments with the emergent nature of technology for inclusive employment. To make sense of the work needed to engage with care in- and between the two layers, we introduce Joanna Latimer’s (2013) notion of being alongside. She poses that most relations involve the preserving of divisions and the dissolving of boundaries. This results in a practice of constant attaching and detaching, bringing about “intimate entanglement with each other’s world-making” (Latimer, 2019, p. 1). We argue that being alongside can be a fruitful way to help us engage carefully and pose that an approach based on reflexive monitoring in action (RMA) (Van Mierlo et al., 2010) can support such practices.

Experimental Methods for Being Alongside We draw from a program that funded seven one year pilots to experiment with inclusive technology (CTI, 2020). We present empirical findings from two pilots; Be App and Vitality Now (to warrant anonymity, the pilot names are pseudonyms). They represent a situation where being alongside helped caring relations flourish and one where being alongside was more challenging. We took insights from intervention-oriented research (Downey & ZuiderentJerak, 2021; Guggenheim, 2020; Zuiderent-Jerak, 2015) and RMA (Van Mierlo et al., 2010) to set up a reflexive evaluation (Klaassen et al., 2021; Verwoerd et al., 2020). A reflexive evaluation aims to deal with persistent problems through; “the involvement of multiple stakeholders for change in multiple contexts” (Regeer et al., 2016, p. 25). In a reflexive evaluation a space is created where people learn together, from and with each other (Bradbury, 2015; Baum et al., 2006). Learning in such a space is supported by a an array of tools and methods that can be used or combined in a flexible manner, allowing for flexibility while keeping a focus on the intended aim of the intervention. The idea is that such a setup helps balance the accountability needs of the pilot funders with the learning requirements of a pilot project in a complex multi-stakeholder setting (Regeer et al., 2016, p. 7). In this method section we explain the basic setup of our reflexive evaluation. How the reflexive evaluation took shape in the workplace is further clarified in the results section. Two key methods we used in our reflexive evaluation were; a Dynamic Learning Agenda (DLA) and Outcome Mapping (Regeer & Bunders, 2009; Earl et al., 2002). A DLA is a dynamic document with learning questions formulated in close

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collaboration with the participants themselves (Van Mierlo et al., 2010; Regeer & Bunders, 2009). The formulation of a learning question is always in the format; how can we reach goal X, while or despite Y? Together the learning questions form a learning agenda depicting the possible challenges the participants might face in trying to make a change. By periodically adjusting the learning agenda it becomes a dynamic document aimed at supporting change processes through reflexivity (van Veen et al., 2014). The DLA is combined with an Outcome Map to further understand how these change processes will eventually lead to transformation. An Outcome Map is a map of intended pathways to transformation and the specific steps that are needed to reach this (Earl et al., 2002). The mapping is an iterative process where participants formulate intended goals and reason backwards towards what inputs and activities are needed, how these activities lead to certain changes and how this will eventually lead to a certain effect. The aim is to reveal the reasoning behind a pilot, serving as a template to surface what concrete actions and changes are needed. To further bolster the information in the DLA and Outcome Maps we conducted semi-structured interviews and participant observations. All respondents gave their written informed consent. These interviews and observations served as invaluable input for the first version of the DLA and Outcome Maps as well as for the periodical adjustments. To facilitate learning between the different pilots, we organised workshops with the pilot participants (end users, colleagues, managers, technology developers, supervisors, and other researchers). We organised a workshop with relevant policy actors to inform them about the challenges in the pilots and put them in a position to act upon these challenges. In our reflexive evaluation, the combination of different methods and some flexibility in what methods were prioritized for each pilot was essential to make sense of the dynamic change processes going on. The following sections will show how these methods took shape for Be app and Vitality Now respectively.

Be app The Be app was developed for people who have difficulty communicating or whose verbal skills are not strong. The rationale is that the app improves the agency of users by helping them communicate visually. In the Be app users build a database with images, text and stories that mean something to them. They can then use these as resources to more easily start a conversation with their colleagues, supervisors, managers etc. The app was implemented in a sheltered employment company for employees with a mental- or cognitive disability. This case shows how the two layers of care where kept in tension through a constant attaching and detaching to each other’s speculative commitments. The case is described in three parts; the care out there, the care we bring and being alongside.

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Care Out There Our first interaction with the app was during a brainstorm session facilitated by the developers of Be app. In this session the developers wanted to collect feedback on the current version of the app. Stakeholders (job coaches, supervisors, managers etc.) working for the company that would implement the app attended. After a short introduction, where the developers stress the importance of empowering people with a disability through the app, there is a brief coffee moment. I (MG) ask the pilot team researcher if she foresees challenges in the pilot. She confides that for her it is not just about empowering; she also wants to change people’s mindset regarding disability and inclusion. She expects that it will be quite a struggle to convince the employers to reserve time for using the app and show them the importance of including employees in certain processes. After we finish our coffee, we start the first exercise; all attendees are invited to write down their tips and tops on post-its. The project team collects the notes and sorts them broadly into existential, substantive and technical questions. They open up the discussion by taking one of the existential post-its stating; “it should not be too much fun”. The project team researcher says this is interesting because it says something about how we think about work. The writer of the post-it replies that there is a risk of overlooking the initial aim of a conversation when using the app, which would mean a work-related question could quickly lead to a more social conversation, distracting from the work. More notes are discussed, and it slowly becomes clear that some of the participants primarily see the app as a handy tool to increase efficiency and productivity. Examples of this are the idea that the app could be used to clock in to start the workday, to share an agenda with the supervisor, to set work-related targets and to send a photo to message your boss when you are feeling ill, to verify that you actually look ill.

Different forms of caring are enacted in this example, the project team researcher shows her commitment to empowerment and changing mindsets while the participants show how they see the app as an efficient way to increase productivity. The post-it notes are used to start the discussion. By placing the notes into three categories, the project team researcher advances the possibility to not only discuss the technical part but also more existential questions like inclusion. Through this process she tries to elicit reflection in the participants. In a way, she puts her own commitments to the test and through this creates room for a discussion about where the pilot project could or should lead. The learning question for the project team became; how do I strike a balance between empowering the employee through the app and showing the employer the added value of the app while they might focus on productivity and efficiency first?

Care We Bring Having formulated the central learning question we interviewed the managers, who were tasked with implementing the app in the workplace, about their possible reservations.

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After the brainstorm session, we ask one of the managers about the potential added value of the app and the possible doubts she might have, she explains; “We are an organisation with a purpose: there is work to be done. Sheltered employees receive a salary, that is why their work is sheltered. They get intensive coaching but also money so they also need to produce, even if it is at a slower pace”. She adds that she feels the app will cost extra time and effort. We confess that we also think implementing the app will require extra time and effort, to which she vehemently replies; “that is out of the question”. She describes how there is a certain adversity to change in the organisation as a result of a previous merger; “we merged from seven municipalities plus a sheltered employment company. When we arrived here, we started from scratch; no computer, no work instruction nothing”. She goes on to explain that this might be one of the reasons why people are not overenthusiastic about making changes. In a later e-mail she reflects on this interview and shares that a certain resistance to change is present in the organisation and that they are working on it.

In this setting we used the learning question of the project team researcher as a starting point for reflecting with the manager. This opened a position for learning together about the intended purpose of the app. Throughout the pilot we served as a discussion partner for the manager, in e-mails, informal chats and visits she shared her reservations and what problems that she ran into implementing the app. We conveyed these insights from the workplace to the project team researcher and helped her interpret them where needed. She was then able to more effectively step into opportunities for learning with the people in the workplace. Two examples of this collaboration are the testing day that was organized with the end users to better meet and convey their needs and a session aimed at creating more buzz around the app where the developers introduced the new version of the app. The learning question was later specified to; how can I help the company change their culture towards a focus on inclusion of people with a disability as full-fledged human beings in the workplace while there is an inherent resistance to change whenever this puts efficiency at risk? The following example shows how we served as a discussion partner for the app developers on this question. I (MG) get an unexpected phone call from the Be app researcher. She excitedly explains that she had decided to contact the CEO of the company to talk about her experiences with the organisation. She explains that the CEO recognized a lot of the resistance she had experienced in the workplace. They talked about the company culture and the CEO confided that they had to let some people go to improve the company culture. What excited the researcher was that they decided they wanted to use the app for an upcoming training they were organizing to make a fresh start, trying to foster an improved culture.

These examples show how we needed to be flexible in our methodology. The outcome mapping was less important because the aim and rationale was quite clear. Instead, we used the DLA questions to facilitate the forming of a collective around this aim. Through countless informal talks, extra visits, e-mails etc. we helped build support for the aim of the app, eventually creating possibilities for being alongside.

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Being Alongside For us, being alongside was about moving with the care circulating in both layers, attaching and detaching at the right time in a partial connection of sorts. An important aspect was recognizing that sometimes an auxiliary role can give way to being alongside of others. By giving the project team researcher room to take her role she was able to test her commitments and surface some of the tensions in the layer of care out there. She elicited reflexion in multiple ways; a myriad of talks with different stakeholders, giving advice to these stakeholders, setting up an extra testing day and redesign meeting, organising brainstorms and feedback sessions, facilitating talks between people in the workplace and talking with the managers and CEO about their concerns and challenges. She alternated being attaching and detaching to people’s commitments; she was attached when reflecting with the supervisors about their vision for the app and detached when asking us to facilitate the testing day with the end users. We see this work as being alongside, working together towards a shared goal while staying true to your own commitments and attaching or detaching to the commitments of others when necessary. The initial focus of her being alongside was the environment. This eventually gave way to being alongside people with a disability, as is illustrated in the following excerpt. I (MG) join a meeting where the pilot team introduces a new version of the app. This time, employees with a disability join the session. Afterwards one of the participants, a cool looking employee with a baseball cap and thick accent, agrees to test the app in an interview with the developer. They sit beside one another, both facing forward, on two built-in chairs with a table. On this table the man places his phone and opens the app. The researcher asks; “why did you add the icon fun?”. He explains that he wants to think about nice things when negative thoughts gain the upper hand. Together they search for photo’s that fit the nicecategory. Every time they use the app, the researcher moves her upper body closer so they can both see the screen. Throughout the conversation, she alternates between moving closely looking at the app and moving further away asking questions and listening intently. Using the app, they have a conversation about how horses help him deal with stress and how his friends sometimes gift him orchids without telling what colour they are; he cultivates them and likes the excitement of finding out what colour comes out. The conversation takes a more serious turn when they talk about how people will sometimes bring him food, because otherwise he would have to rely on food stamps. He explains; “I used to be a giver and now I have to take, take, take, which is hard”. In response the researcher comments that maybe what he gives is less about material stuff and more about being there for people, listening to them and showing affection, to which he replies; “that has become second nature; I do not see that as giving anymore”.

What happened in this talk can be seen as a small-scale example of how being alongside worked in the pilot as a whole. But it was not only an example, because the talk was recorded as a movie. A movie which could later serve as an example of how the app can be used to empower people in the workplace. In making this movie, the added value of the app became tangible. But more importantly, it captures the use of the app in such a way that it allows people who see it to be moved, to be inspired. The movie shows the value of taking time to interact with a person’s world, really seeing someone as they are.

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Vitality Now Vitality Now is a dashboard intended for people with a disability who have trouble with energy management. The rationale is that connecting different health- and energy consumption measurements can provide pointers for better a better energy balance throughout a working day. Vitality Now is a dashboard interface that connects smart watch measured health parameters (like heart rate and movement) with perceived energy consumption data for work related activities. This case shows how the speculative commitments in the two layers of care were not held in tension. Instead, it shows how a disconnect between the layers prevented alongsiding, giving us an idea of why being alongside is so important when trying to make a change. The case follows the same structure as the previous one.

Care Out There The organisation behind Vitality Now has a clear mission statement on their website; they are committed to help foster a normalised job market where people with disabilities are not taken for granted but appreciated for their talents and motivations. This mission is an integral part of their organisation as they mainly employ people who live with a disability. Their mission is also evident in their catchphrase; “we all have our disabilities”. The following example shows how these commitments took shape in their pilot project. When we tried to plan a meeting with the users of Vitality Now, the team had indicated that our interviews might be too energy consuming for them. As a compromise we agreed to join their annual meeting. We (MG, TZJ) are meeting the project team at a renovated tobacco weighing house, a hangar like space with a large wooden floor and a slight echo when we talk. Two pilot members are attending the interview together with one of the co-founders of the organising company. They describe how their dashboard will give insight into how much energy you consume by doing a certain activity and how this information can help the user to better balance their energy. We ask a question that is central in our outcome mapping exercise; how do you define success? They reply; “the hypothesis is that there is a relation between activity, biometric data and the energy level a person has. I hope that we at least have an answer as to whether or not this is a solid hypothesis”. We ask how understanding the energy cost of an activity will eventually lead to people changing their work habits. They answer that they are in the data collection phase of their pilot and that they first want to test their hypothesis; “Meander (Dutch mid-sized hospital) has been working on this for years. There is enough evidence, also scientific, to expect a correlation.”

The team equates activity with energy consumption and sees bolstering this hypothesis as a first step. This is reflected in their learning questions; how can I plan a workshop when the testing group has limited energy; how do I make buying a smart watch affordable for the testing group while there is a cost involved; how do I show that the dashboard supports employees in their work while it is difficult to show concrete (e.g. productivity) outcomes. These questions reveal how they mainly predict challenges in effectively organising and measuring in the testing phase.

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Based on our own experiences we wonder if energy is only consumed, or if you can also gain energy through inspiration. In the following section we reflect on how we interacted with this hypothesis.

Care We Bring The following excerpt, taken from the same interview as above, illustrates how we tried to put our own commitments to the test; In reaction to the team explaining their rationale, we ask what they feel employers and other people in the workplace can do to accommodate the dashboard. The pilot members seem reluctant to talk too much about the employer side and double down on empowerment. We explain that we feel inclusion might also mean considering that not everyone can adhere to the same criteria “which also requires something from others” (TZJ). The co-founder replies: “If you talk about inclusion, it means that in principle you accept people as they are, with all their pros and cons. You then observe; these are our processes, what part of that process can be done by such a person?”. They add that people with a disability sometimes have fewer working hours available, often as a result of their disability. This answer left us feeling unsatisfied. We fear that the focus on personal health parameters might risk locating full responsibility for energy management with the person living with disability and decide to ask a third time about the accommodations employers can make. We are told that our question is too broad, and we should really talk about the specifics of the pilot. Our answer is a reluctant and soft-spoken; “too broad a question, very well”.

Based on empirical data from other pilot projects (see Grijseels et al., 2021) we were committed to finding out what role the environment can play in facilitating inclusion. Like the Be app researcher, we put our commitments to the test, hoping this would elicit reflection on the rationale of the pilot. However, in the example it seems the pilot team felt our questions were more about us testing their commitments. This creates opposition, detachment, and both parties got stuck on their take on inclusion. In the previous case, this detachment was made productive through practices of being alongside and because people in both layers of care all rallied around a collective aim. Here this detachment prevented us from moving from a practice of critique towards a place of being alongside, being able to be moved by the doings and commitments of others. For us, the key question after this meeting became; how can we be moved when our commitments diverge? Or when our commitments speculate diverging paths to inclusivity?

Being Alongside? There was an instance during this annual meeting where we were moved by a situation. We are on our way to the annual meeting in an old historic town that has no train station. Luckily, there is a bus service, albeit infrequent. One of us (TZJ) is on an early bus with a

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fellow traveler who may well be going to the same event: a woman in a wheelchair wearing professional attire. They get off at the same bus stop and the woman asks for help with opening the seatbelt that secures the wheelchair to the bus. Meanwhile the bus driver gets out of the bus and deploys the wheelchair ramp that will allow her to roll onto the sidewalk. They strike up a conversation and are indeed heading to the same meeting. The journey through the historical town is challenging; cobblestones make the ride bumpy and uncomfortable. The cobblestones do not allow for much speed and the curb isn’t always as low as it should be. The woman takes some of the curbs head on and some backwards, all the while continuing the conversation. This must be an exhausting ride and TZJ wonders why they have selected a venue that is so hard to reach. At the same time, he was struck by her story: “I’m a freelancer, mostly design and communication work. I’ve been working from home, all email and calls. I’m going here because I really want to feel part of a team again”. Working from home was getting burdensome and this annual meeting is where she’ll meet her colleagues.

For the employee, the energy drained by the journey is balanced out by the energy she gets from feeling part of a team. Here, connecting to each other’s world meant learning how energy consumption worked for her. This short moment of being alongside influenced our own commitments throughout the project. After the annual meeting we reflected on how we could be most useful for the pilot. We wanted to try and make the seemingly opposed commitments generative, working through the possible discomfort (Murphy, 2015). We tried to do this through talking with the project team, visiting their testing days, specifically including the team in our workshops, via personal e-mail messages etc. However, we did not succeed in making a sustainable connection and eventually decided to consult with the project funder. We decided to join the periodic update session the funder had with the pilot team. In this meeting the funder was taken aback by the focus on testing, she thought the pilot would eventually lead to a working app instead of a bare-bones interface and an excel sheet. Consulting with the funder here can be seen as being alongside by detaching. This moment can be seen as a last attempt at constructively working towards a shared aim. However, the momentum had fleeted and in both the layer of care out there as in the care we bring an ability to really understand, or be moved by, each other’s perspectives was missing.

Discussion Our cases show a multiplicity of ‘careful engagements’ in the two layers of care. We suggest that a partial connection between these layers is essential for balancing the speculative commitments of the people involved. Annemarie Mol (2011, p. 86) poses such a connection as tension; “Different ways of caring and different care practices deserve to be held in tension. The art is to compare and contrast different situations of care and to wonder which lesson might transport between them”. Puig de la Bellacasa (2017) extends that cases where the affective, material, ethical and political are held in tension are especially interesting.

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In Be app a connection between the layers of care allows being alongside in various ways. The care ‘out there’ takes the spotlight, while our own role becomes more auxiliary. We see the partial and intermittent connection needed for being alongside (Latimer 2019, p. 265) in the way the Be app researcher moves between actors; moving information, attaching, detaching, preserving divisions and dissolving boundaries (Latimer, 2013). Simultaneously, we are alongside the researcher, facilitating reflection through our learning questions, intervening when needed and detaching when appropriate. The Be app researcher meets the people in the workplace ‘where they are’ and we meet the researcher ‘where she is’. In such a configuration, learning and caring relations can flourish and we can; “appreciate, test and respond to the situated becoming that our accounts also contribute to make possible (and impossible)” (López Gómez, 2020). In Vitality Now, the care out there was underpinned by the project team’s commitment to their hypothesis on activity as an indicator for energy consumption. Both the care out there and the care we brought represents a critical care perspective (Martin et al., 2015) in the way it involves siding with the environment first and making adjustments there. This resulted in the care in the layers lacking a shared aim to make adjustments for, or as Myriam Winance (2010, 111) describes it; “To care is to tinker, i.e. to meticulously explore, “quibble,” test, touch, adapt, adjust, pay attention to details and change them, until a suitable arrangement (material, emotional, relational) has been reached”. We tried to make a connection between the layers through the learning questions and other invitations to reflect. Building on Murphy (2015), we feel that there was a chance for care in discomfort here. However, for this discomfort to be productive it is key that even when detached or only partially connected to each other’s commitments, we still allow ourselves to be moved. We were moved by the employee travelling to a meeting despite the difficulties but were not able to use that encounter as a starting point for being alongside. This is a crucial difference between the two cases. The way the Be App researcher was alongside those who were able to be at the workplace through the app, had the power of moving with and being moved by (Endaltseva & Jerak-Zuiderent, 2021). Her moving with and being moved by is vividly instantiated in the conversation with someone who is not only an employee with a disability, but a second-nature giver and lover of orchids of yet unknown colours. This “emergence is transformative, motile, in the sense that moving/being moved transforms all those involved” (ibid., p. 46). Not only for us, who feel privileged to be alongside, but also for the company that is going through the rough trajectory of finding its shape and purpose after a reorganisation. Being moved was possibly a powerful tool for transformation here. We pose that being moved by is an integral part of being alongside. These cases show how the notion of being alongside can be mobilized, through an RMA approach, as a way to engage with care. Our RMA approach allowed for the methodological flexibility needed to be partially connected. This partial connection, alternating connection and disconnection, affectivity and disruption, amplifies the advantages of matters of care without obscuring the messiness, difficulties and asymmetric power relations involved (Martin et al., 2015; Murphy, 2015). The

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learning questions provided a subtle way to stay with the troubles and violence that might be involved in careful engagements and would require; “stirring up and putting into motion what is sedimented, of decentering and cracking open the smooth into accounts of the messy and the partial - Such reckoning will require willingness to work through discomfort, worry, anger, pain, disconnection, and living in non-alignment” (Murphy, 2015; p. 15). In the learning questions, these tensions are inherently inscribed through the “X, while/despite Y” format. We learned that stirring up what is sedimented may best be achieved through practices of being moved than through practices of critique.

Conclusion We hope to have illustrated how careful engagement can take different forms and can take place in- and between different layers. We distinguished two layers of care corresponding with the notions of care in practice and critical care. We pose that careful engagement is a way to balance what emerges within- and between these layers with the commitments people in these layers bring to the setting. This balancing takes on different forms in different settings, alternating attaching and detaching, while always remaining partially connected. For this partial connection it is essential that the participants allow themselves to move with- and be moved by each other’s commitments. This in turn is facilitated through the notion of being alongside. In our example this being alongside is underpinned by a reflexive evaluation aimed at reflexivity and learning. This reflexive evaluation allowed ample flexibility to adapt to the situation at hand while keeping the focus on the process and intended goals. We hope that this chapter offers a deepened understanding of what careful engagement can look like for researchers and pilot participants; being alongside each other’s commitments, the ability to move with- and be moved by, all the while reflecting and learning together about what works in an emerging configuration of technologies for inclusive employment. In this way our chapter can be read as exploring a possible avenue of how careful engagement might look in the messy practice of contributing to inclusive employment.

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Mike Grijseels, is a PhD candidate at the Athena Institute, Vrije Universiteit Amsterdam. He was originally trained as an exercise therapist and worked in elderly care for 6 years. He then pursued a MSc in International Public Health at the Vrije Universiteit Amsterdam. His current work is on inclusive technologies for people with disabilities where he combines different insights from STS (Actor-Network-Theory, Transition Studies, technologies-in-practice, matters of care) to answer the question; how can we use technology to improve inclusion for people living with disabilities? In this transdisciplinary, action-based research, Mike uses methods based on reflexive monitoring, situated intervention, joint learning and co-creation. He is also a member of The Netherlands Graduate Research School of Science, Technology and Modern Culture (WTMC). Barbara Regeer, PhD, is associate professor transdisciplinary strategies for sustainable development and system transformation at the Athena Institute, Vrije Universiteit Amsterdam. Her research interests are in emerging innovative strategies for (sustainable) development, with a specific focus on the facilitation of multi-stakeholder processes, knowledge co-creation, social change and mutual learning between all actors involved, in such areas as sustainable food systems, integrated rural development, mental health care, child and youth care, and disability mainstreaming. Besides publications in the mentioned areas in international peer reviewed journals, she has (co)authored books on approaches for knowledge co-creation for sustainable development. Teun Zuiderent-Jerak, is associate professor of transdisciplinary science & technology studies at the Athena Institute of the Vrije Universiteit Amsterdam. He has published widely on social studies of health care and medicine. His research includes the study of evidence appraisal in relation to human rights, knowledge standardization and quality improvement practices in health care, complex global health interventions and their evaluation, and all his scholarship involves transdisciplinary research practices that explicitly aim to intervene in the practices studied. He is author of Situated Intervention; Sociological Experiments in Health Care (2015, The MIT Press) and editor (with prof. Gary Downey, Virginia Tech) of Making & Doing: Activating STS through Knowledge Expression and Travel (2021, The MIT Press).

Part II

Frictions and Troubles in Careful Engagement

Chapter 8

Caring in Precarious Times: Engagement as a Situated Discreet Practice Cíntia Engel and Helena Fietz

Introduction In this chapter, we discuss three dimensions of “careful engagements” we experienced as researchers conducting “ethnography at home” during a political and economic crisis in Brazil: (1) actively participating in the creative day-to-day efforts to mend precarious infrastructures of care; (2) acting in favor of lasting and collective infrastructures of care through a public positioning; (3) caring for the very conditions of possibility for doing research. We draw on a specific field situation to examine how the care practices for adults who depend on others to perform daily life tasks are entangled with public policies and austerity measures and our roles as researchers in such a network. By doing so, we explore engagement as a situated discreet practice and the challenges of caring in times of precarity. We conducted the research that informs our argument from 2016 to 2019 as Ph.D. candidates in social anthropology at two different federal universities in Brazil. Both our fields were in the city we lived and studied, and that is what we mean by “ethnography at home” instead of traveling to a specific field site for a determined amount of time. Helena’s research was done in public, non-governmental, and privately-run organizations with families of adults with intellectual disabilities from various socio-economic backgrounds in Porto Alegre, Southern Brazil. Cintia conducted ethnographic research in a multidisciplinary public geriatric center specializing in dementia treatment in the Federal District and with three families living in different regions of this metropolis. Despite the particularities of each research, both examined the multiple enactments of care when caring for dependent adults. As C. Engel (✉) Institute for Bioethics and Health Humanities, UTMB, Galveston, United States H. Fietz Louisiana State University, Baton Rouge, United States e-mail: helenafi[email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_8

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mentioned above, the country was experiencing a profound political and economic crisis that resulted in several cuts in public investments in education, social assistance, and public health, affecting the lives of our interlocutors and the very conditions of possibility of our research. Doing fieldwork in such times prompts us to ask: how can we carefully engage amidst constant threats that risk both our interlocutors’ care practices and the very doing of our research? How can we, as researchers doing “ethnography at home,” explore the creative process of care while recognizing that such creativity results from a continuous lack of resources but can also enable it? As researchers examining care, we constantly speculate about what care is and does by analyzing multiple actors’ practices in situated spaces. Since we understand care as a moral practice that is always situated (Mol et al., 2010), we pay particular attention to what values are being protected and avoided with each practice and the negotiations between different actors (Pols, 2015). When caring for dependent adults, our interlocutors must engage in creative care processes to mend precarious infrastructures under the constant threat of seeing their constructions becoming ruins. After all, these projects often end when the sole caregiver can no longer provide care, when the institution loses the public funding it depended on to keep its door open, or when a social benefit or even the Universal Health Care System (SUS) is jeopardized. Inspired by Michelle Murphy’s (2015) call for “unsettling care,” we aim to present a care narrative that moves away from “non-innocent narratives of belonging” and disturbs assumptions and arrangements to reconfigure them. To do so, we divided this chapter into three main sections to explore three dimensions of engaging with care: (1) Engaging in precarious infrastructures; (2) Engaging in care politics; (3) Doing research in austerity times: beyond heroic tales. We center our narrative on one day of Cíntia’s research to showcase the different modes of engagement we had to perform when conducting fieldwork in a time of crisis. We argue for an understanding of engagement as a situated discrete practice that shapes and is shaped by the conditions of possibility of the research and that does not place the researcher in the center of it but as an actor who needs to learn how to engage in collective efforts managing their specific abilities. Moreover, it requires us to face the fact that our contributions are contingent and often precarious.

Engaging in Precarious Infrastructures In 2018, Cíntia was in the middle of her fieldwork, an ethnography on dementia and care at a public multidisciplinary Geriatric Center and the households of three families in the Federal District of Brazil. The Geriatric Center was part of a teaching hospital connected to the federally funded University of Brasilia, where she was doing her Ph.D. It was common for scholars to engage in projects in the hospital, such as a choir created and led by a music professor and maestro who believed music to be a powerful tool for promoting well-being. With the participation of patients

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with dementia, their family members, and care workers, the space worked as a proxy group therapy moment. Led by its founder, the choir thrived as the most popular multidisciplinary activity at the Geriatric Center. In 2016, however, the maestro passed away, and the choir nearly ended. Nevertheless, it continued to exist due to the efforts of its willful member, Mr. Carlos, whose wife had been diagnosed with Alzheimer’s disease years before and passed away the same year as the maestro. Hoping to preserve a space essential for him and his wife, Carlos, a middle-class white man in his 70s, decided to keep the choir alive. “We must keep singing until we find another maestro,” he used to say. When Cíntia met him, Carlos conducted the choir with the help of Joana, a professional caregiver, and just a handful of people still attended it. Cíntia was brought to the choir by one of her interlocutors, Mr. Caruso, a wealthy 85-year-old white man diagnosed with Alzheimer’s 10 years prior. According to his daughter, the choir was Mr. Caruso’s most loved activity. At home, he would constantly sing the pieces he had practiced, and his caregiver sang to him when he got scared or agitated. As soon as she arrived, Mr. Carlos told her about the choir’s history and engaged her in helping him lead. Cíntia soon realized that none of the choir participants seemed well trained, and there were no instruments to accompany them. Still, everyone had a handout with songs that were part of Brazil’s musical history and collective memories and always sang them in the same order. Carlos, Joana, and Cíntia were trying to keep the choir alive as well as possible since the project depended on the untrained voices of a family member, a professional caregiver, and a researcher. They were hoping that, at some point, a maestro would take over the project and do a better job. In feminist science and technology studies, the idea that caring involves constant tinkering in a complex, messy, and shifting world (Mol et al., 2010) became a mantra. Mr. Carlos’s experience with the choir enlightens us on what it means to be a good tinkerer. To maintain an activity of care during a crisis, he had to convince and recruit other people, whether they could sing or not, and hope to do their best under the circumstances. He sensed a researcher willing to learn about care was a perfect recruit. Cíntia had never sung before, did not have the personality to sing in public, and could not play any instrument. Nonetheless, she could read the songs, be sensitive to other people’s rhythms, and include her voice in a collective of voices— and in a choir such as this, the more, the merrier. For people with disabilities or dementia, their families, or their friends, care is manifold. In Brazil, caring for a dependent adult often means building and maintaining the infrastructures of care (Fietz, 2020; Star, 1999) while disputing private and public funds. In fact, families created most services that currently offer activities for these populations in the country, a movement that started in the 1950s and continues to this date (Block & Calvante, 2014; Block, 2007). This argument is further developed in Helena’s work focuses on the efforts of families of adults with intellectual disabilities to build independent living arrangements for their child to address these processes as an “autocontruction of care” that is informed by public policies centered on family care, public representations of disability, and family’s expectations (Fietz, 2020; 2019).

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When we first started examining the day-to-day care practices of families caring for dependent adults, we were concerned about staying out of their way while learning to engage carefully with their daily lives. Each family gave us signals of what that meant. We could be the driver; the companion to a person with dementia while his wife ran errands; the volleyball player who completed the team for a recreational game to take place; the person who would accompany them when dealing with judicial issues; or a choir singer. As Puig de la Bellacasa (2017) argues, engaging with care means learning how to be responsive in a given ecology. Learning this ability as an ethnographer often means understanding how to be present in a shifting collective, helping more than getting in the way, and being aware of the arrangements that make up our daily lives. Awareness is crucial to engagement, and engagement is critical to creating infrastructures of care. Mr. Carlos, an experienced tinkerer, knew the odds of finding another maestro for the single free musical activity at the Center were higher if the choir was working. Furthermore, our presence could pressure the staff to find the means to fund the choir. Our precarity, the lack of resources and professional singers, helped with that: we needed support to sing, and they could hear that every week. For our interlocutors, tinkering is also a way to make those around them—administrators, government officials, institutions, and researchers—care. Getting more people to care about the issues one cares about is part of what makes a good tinkerer. We acknowledge this tinkering as cleverness, self-organization, and the creation of responsive webs of care (Fleischer & Lima, 2020; Fazzioni, 2021; Fonseca & Fietz, 2018). However, we also aim to trouble this narrative to think critically about how power operates through care (Murphy, 2015; Nicholls et al., 2021). The politics of care has almost always depended on this work, which can be exhausting. Creating a pleasant daily life is not easy. Although engaging in this effort can be empowering, it is also one more thing to have to do (Fleischer & Lima, 2020). The main complaints of our interlocutors were tiredness and lack of time to enjoy affection in care relationships. They longed for adequate material conditions and more people involved in care practices. In other words, our interlocutors strived for care to be a collective issue, a matter of social justice, so it would not become an individual burden for those deemed responsible. Creating and sustaining infrastructures of care is tiring when it depends on personal efforts. It can all crumble when someone dies, gets sick, or is excessively tired to continue, and it usually does. The tinkering that prevents the services or activities from dying out contributes to its precariousness. Like adding silicone patches to persistent leaks in an old rented apartment, these individualized practices mend weak and faulty infrastructures. It would be too expensive to change the plumbing, no one knows or wants to discover the extent of the problem, and the owner has no interest in renovating it. Since the tenant has nowhere to go, they keep mending the leak to keep on living, even if in a compromised building that continues to deteriorate. Tinkering in times of precarity often consists of temporary fixes that will not stop the leak for too long. As ethnographers working with care, engagement can mean becoming one of the mendings our interlocutors have to look for, such as counting on a lousy singer to make others care for a choir.

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Engaging in Care Politics The negotiations involved in fieldwork are many, and we often became active participants in our interlocutors’ efforts to mend the broken infrastructures they had to work with. Our presence was also valued for what it could bring to their struggles to keep their activities going amidst the constant precarization of care. However, by doing so, we risk romanticizing amendments that are not only a consequence but also an integral part of the “hyperprivatization of care” (Engel, 2022). For Engel (2022), the current care project of the Brazilian alt-right articulates three measurements: restriction of public services, precarization of the care work and workers, and moralization of care as a familiar and woman business. Such a project is called hyper-privatization, which differentiates from the former, named by Santos and Rifiotis (2006) as the privatization of care. In the privatization of care, family care was reinforced as a politics, leaving most of the responsibility to the family. Nevertheless, there was the expectation that public policies should support this care by creating public infrastructure and better work conditions for professional caregivers. Of course, public policies such as those were limited and full of problems, but they were on the horizon to compose a partnership between family and state. In the hyperprivatization, however, family care should not have support from the state because the public funds must be protected from excessive spending with social assistance. That is why, as researchers, we are also committed to understanding how recent austerity measures affected our interlocutors’ care practices. At the same time, as citizens whose lives were also affected by such policies, it was primordial for us to get involved in actions to stop the dismantling of public services and policies in the country. Our engagements with our interlocutor’s activities, such as the choir, and the broader political context that made our presence needed in those spaces are interwoven. However, they still require compromises that may harm the very existence of the activities we take part in. On April 4th, 2018, Cintia had to make such a compromise. At that time, Brazil was experiencing the consequences of the 2016 coup d’etat when Vice President Michel Temer, with center-right and right parties, pushed for the impeachment of then-President Dilma Rousseff. Once in office, Temer immediately enforced austerity measures arguing that the previous government’s social policies had “transformed the State into a monster.” One of the several services affected was Brazil’s Universal Healthcare System (SUS), which, if far from perfect, still guaranteed free healthcare services for everyone in Brazil. The Brazilian Federal Constitution of 1988, also known as the Citizen Constitution, regulates access to healthcare in the country. In 1990 the Sistema Único de Saúde (SUS) was created. SUS covers every person living in the country free of charge. Private services are also available, but, in general, private and public healthcare services are independent in Brazil. That day, Cíntia skipped choir practice to attend an event organized by the Federal Association of Private Health Insurance Companies (Febraplan) to present a proposal for a “New SUS.”

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The opulence of the event contrasted with the conditions of the weekly choir practices. In a luxury hotel in Brazil’s Capital, Febraplan gathered congressmen and congresswomen, a former Health Minister, and several important figures who assembled in a room too small for the big turnout. Febraplan’s members and political figures were all wearing suits, while the healthcare workers who attended dressed less formally, a visible distinction to mark what in that space also represented different views about what was best for Brazil’s healthcare system. After a brief introductory protocol, Febralan presented their proposal. The “New SUS” consisted of a partnership between public and private healthcare systems with public services exclusive to the “extremely poor.” In addition, they hoped to shrink SUS’s scope of treatment, narrowing the “unnecessary” expenditures to three categories. First, there was a need to concentrate less on “expensive new technology,” such as innovative cancer treatments or organ transplant surgeries. Second, they expected to suspend “unimportant selfish procedures,” like gender-affirming surgery. Finally, they proposed to cut the “excessive” investment in keeping aging people with chronic conditions alive. Regarding the third point, Febraplan’s representative claimed: “the aging of the Brazilian population will bankrupt the healthcare system! We must be careful not to spend all our money on just one portion of our population.” The event had timid media repercussions. Still, one particular piece made the compelling point that even though a “new SUS” was unlikely, we should pay attention to the growing influence of the private sector on Brazilian health policies (Reis, 2018). Most of our interlocutors—families of people with dementia and intellectual disabilities—depended on SUS for treatments and therapies. Defunding this system was a real threat to those who counted on it. For example, 75% of the elderly population in Brazil access healthcare through SUS (ELSI, 2018). That is why an event organized by Febrablan to propose a “New-SUS,” an alternative to the public and universal healthcare system but coordinated by private insurance, raised a red flag. At that time, understanding the implications of such a proposal seemed more relevant than attending choir practice, even if not more urgent. Tinkering, when doing research, also involves making decisions hoping for the best outcome possible. In this case, we hope our findings can be valuable for those who work to strengthen the infrastructure of care for dependent adults in Brazil. Next week, when Cíntia returned to the choir practice, she was greeted with the usual warmth by Carlos, Joana, and the participants. She was missed, but her absence did not prevent the activity from taking place. The several setbacks they had faced before she got there did not either. When we refer to engagement as a situated practice, we point to the paradox of addressing the precarity of services while defending the policies our work criticizes. Because we did our research at a time when austerity measures were being implemented, and hard-fought-for policies and services were jeopardized, we felt compelled to engage differently with the centrality that the state had for our interlocutor’s practices. Anthropology is usually critical of the violence States force on social relations (Das, 2007). For instance, ethnographies on SUS show how the care offered come with control, is based on racial and gender bias, and, for people with dementia and

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disability, is based on a medical model that medicalizes their specificities (Fleischer & Lima, 2020). The Geriatric Center, for instance, maintains multidisciplinary activities as something extra, being the primary treatment heavily based on medicines used to control undesired social behavior. Public funds rarely go to initiatives such as the choir. Furthermore, when they exist, they are generally concentrated in central regions and consumed by a mainly white and middle-class public. Acknowledging the words of disability studies activist and scholar Leah Lakshmi PiepznaSamarasinha (2018, p. 23), we urge for “a vision of liberation that understands that the state was built on racist colonialist ableism that will not save us because it was created to kill us.” We strive for a critical understanding of the state and do not wish to present it as a neutral solution to the social organization of care. However, living in austerity times, it was urgent to consider that the proposed cuts and changes would have disastrous consequences for dependent adults in Brazil. The threat was already a source of anxiety for most people we worked with, a fear about a near future where their already precarious condition may derail. Engaging with the real consequences of austerity was, for us in that time and position, a necessary aspect of “thinking with care.”

Doing Research in Austerity Times: Beyond Heroic Tales The different modes of engagement we experienced were not necessarily voluntary nor the result of an altruistic heroic researcher, but rather the consequence of an ongoing process where we had to learn how to participate well and what our role as anthropologists committed to examining care could be. In this sense, it is essential to understand that our day-to-day participation activities or our commitment to collective causes that would affect the lives of those we work with are means and not an end to our interlocutors’ strategies to cope with precarity. Equally important, as we see it, is our engagement with knowledge production on care, which depends on having the necessary conditions to do so—a struggle connected to the austerity policies that impacted the lives of most Brazilians. On April 4th, another event took place in Brasília. Public funds finance the leading universities in Brazil, and promising graduate students who need financial support to remain at the university receive scholarships from the government. Public Universities and fellows carry out most of the scientific research in Brazil, and all fellows must dedicate themselves exclusively to their research and cannot work outside the university. The stipends, which have not been raised since 2013, are few when considering the number of researchers in the country. They are not equally distributed in the territory, with most going to universities in the south and southeast of the country. Still, they are the only source of income for several—if not most— researchers in Brazil. The day before April 4th, we read on the news that the budget for the federal agency responsible for paying our scholarships had been cut, and they did not have the money to make the payment. As a result, the livelihood and projects of many researchers, including ourselves, were at risk. The following day,

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professors, students, and technicians organized a protest in front of the Ministry of Education. Despite the urgent need to participate in this protest with her colleagues, Cíntia decided to attend Febraplan’s event to understand better what defunding SUS could mean for her interlocutors. A decision that was not easy to make. The cuts to federal research agencies represented a threat to graduate research in Brazil. From 2003 to 2013, Brazil experienced an expansion of public higher education that, much like SUS, is free of charge for all those enrolled. In the past, Federal Universities’ student body had been composed mainly of white middle or upper-class students. However, with several universities opening in different states, more students admitted to graduate and undergraduate programs, and the consolidations of affirmative action policies, the student body was becoming more and more diverse in those institutions. Of course, a more diverse student body also meant more students depended on their stipends instead of counting on family money. Austerity measures in higher education threatened equal knowledge production in Brazil. When discussing what it means to be an engaged researcher, we rarely discuss the material conditions that make our work possible, or in other words, how we will provide for ourselves and our families while doing our work. By not addressing this issue, we risk reproducing the idea of research as a personal (and private) endeavor that requires someone who can “leave it all behind” in the name of science. Someone who can always find alternatives to “get the job done” even without the economic means to do so. After all, they act by vocation or responsiveness for a cause bigger than themselves. This kind of tale produces a heroic image that does not account for diverse bodyminds and life experiences, nor for the collaborative practice we understand research to be. The danger of invisibilizing the material conditions that enable our work becomes more evident when tracing a parallel between our research experience and the work on care we dialogue with. Leibing (2017), in her work on representations of care for dementia in Brazil, presents a positive image of the “total caregiver,” a loving person whose life mission is to care. To do so, they leave their jobs and activities to dedicate every hour to the person they care for. Despite having the positive effect of drawing attention to the invisibilized work of care, focusing on a “total caregiver” can be a trap that positions the caregiver as a person who should always know what to do, even in precarious situations (Buch, 2018; Molinier, 2012). Resilience, especially in vulnerable situations, is continuously enacted in care practices (Mattingly, 2014). However, once again, we risk composing heroic narratives when we produce descriptions that only illuminate the capacity always to find a solution in ambivalent worlds (Buch, 2018). Disability Studies’ work on care has also pointed to the dangers associated with a heroic tale of care that centers agency on the caregivers, sometimes even representing those in need of care as passive dependents or burdens (Kittay, 2011; Piepzna-Samarasinha, 2018). Care is also a relationship where power circulates in complex ways, and people responsible for caring can control, manipulate, and violate those they care for (Simplican, 2015). It is also true that those providing care can be in the weaker link of the power relationship. Historically, care work has concentrated on ill-paid nonwhite women and migrants (Zelizer, 2011;

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Hochschild, 2019). In countries like Brazil, it is also embedded in slavery and unpaid exploitation of black women (Gonzales, 1984; Collins, 2016). Ultimately, working on care has provoked us to rethink our own practices as researchers in a moment when worldwide neoliberal measures within academia combined with national cuts and defunding of higher education create a precarious context. In an analogy to the experience of our interlocutors, the production of academic knowledge in Brazil has been dependent on the constant tinkering of researchers who have to do with what they have. Processes that, in Portuguese, we could call a constant “gambiarra.” Of course, the experiences of researchers in Brazil are many, but it is a context that tends to privilege a few and leave most in a vulnerable position of not knowing how or if they will be able to continue to do their work. Moreover, as we hope to have made clear so far, our participation in our interlocutors’ lives, our engagement with their day-to-day practices, and the context in which they occur cannot be disentangled from the resources we have or do not have to do our work. In this sense, discussing what it means to do research is essential for examining our engagements with care. Furthermore, in Brazil, Public Universities strive for community outreach and are essential for infrastructures of care. For example, the choir took place inside a teaching hospital connected to the federal university whose existence was dependent on public funds for education and health. The maestro who started the choir was a professor, and scholars and students led many other projects in the hospital. The same is true for several other care projects we followed that counted on government funding, even if indirectly or depended on partnerships with public universities to continue to work. The public university actively participates in care infrastructures, mainly through the work of its scholars. In her book “Matters of Care,” Puig de la Bellacasa (2017) reflects on the politics of knowledge. We build on her work to think about “careful engagements” and to stress how, in our trajectory, such engagements did not happen in a vacuum. It was not the linear result of our projects and personal experiences or learned abilities within the field but enacted within an ecology of factors and forces. Therefore, engaging, for us, means navigating different dimensions of what caring means. In our experience, it consisted of trying to participate in the work of mending precarious infrastructures, publicly protesting against constant threats imposed by austerity to the existent services, and, at the same time, partaking in the protection of a diverse public university and the material conditions that enable our job.

Final Words: Engaging as a Situated Discreet Practice The austerity threats discussed here did not fully materialize. For instance, SUS’ structure remained the same, and our doctoral fellowships lasted until we finished our research. However, progressive cuts and minor progressive transformations in public policies significantly shrank care (and research) infrastructures dependent on public funds. The threat itself has effects and puts us all in an anxious and fearful

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state. If it is true that Brazil has never experienced a “welfare state” or that public services have always been somewhat precarious (Fonseca & Fietz, 2018), the threats to the hard-fought achievements rendered what we had been describing as ‘public care’ and ‘public university’ fragile, not trustworthy alternatives. It is also true that care infrastructures such as SUS can be controlling and ableist towards the experience of people with dementia or disabilities. State policies are far from being a panacea for the social organization of care, and we do not wish to romanticize them or invisibilize the violence committed within state institutions. However, when facing austerity, we feel compelled to defend the same services we criticize in our work against neoliberal initiatives that leave many unattended, with lethal consequences for some. Even if we wanted to reflect more abstractly on what good care or good engagement with care is, we could not stay “outside the trouble” of the mundane issues of care and research (Haraway, 2016, Murphy, 2015). Throughout this chapter, we aimed to populate the narrative with different views and dimensions of caring to describe the “trouble” we were in (Puig de la Bellacasa, 2017; Murphy, 2015). In summary, we contend that engaging with care is a situated endeavor with many possible outcomes, depending on the specific challenges we experience in a given period. For instance, we cared for austerity because our interlocutors, ourselves, and our families were overwhelmed by its effects. In that process, we also became aware of the importance of discussing the continuity of public universities and their partnerships with care infrastructures. Additionally, we convey that, while situated, engagement is also a discreet practice. One of the dimensions of well-done care, for Molinier (2012), is that it leaves few traces. It is a discreet “know-how,” an attention to detail, and what needs to be done without anyone asking. Puig de la Bellacasa (2017) argues that learning care is learning to be responsive in a given ecology, knowing how to participate, and how to take a stand, if necessary. Thus, engaging involves participating attentively in collectives, but if we want to deemphasize individuals and their actions, knowing how to participate also includes learning how to be part of the creation of lasting infrastructures that survive deaths, replacements, and changes. Finally, engaging is discreet because our role has modest results, like putting our voice in a choir that needs multiple voices, instruments, space, and projects to thrive. Our role is important and also modest. Before ending, we want to revisit the choir that opened this chapter. Cíntia, as an early career researcher, is constantly moving for temporary jobs and has been away from Brasília since 2019. The last time she visited the multidisciplinary center to provide research feedback in 2022, she learned that Carlos, afraid of the Covid-19 pandemic, had moved to live with his relatives far from Brasília. The person Joana cared for died during the pandemic, and she started a new job. Affected by the pandemic, the dwindling resources for universities and health during Bolsonaro’s era from 2018 to 2022, and highly dependent on personal efforts, the choir perished. However, in 2022, as she presented her research results to the team, Cíntia spoke passionately about Joana and Carlo’s efforts and the incredible results from the choir. As they reminisced about what now seems like a distant past, the workers seemed encouraged to seek partnerships to relive the choir, a mark of pre-pandemic

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times. It may never happen, but it just might. Modest results are far from insignificant.

References Block, P. (2007). Institutional utopias, eugenics, and intellectual disability in Brazil. History and Anthropology, 18(2), 177–196. Block, P., & Cavalcante, F. G. (2014). Historical perceptions of autism in Brazil: Professional treatment, family advocacy, and autistic pride, 1943–2010. In S. Burch & M. Rembis (Eds.), Disability histories (pp. 77–97). University of Illinois Press. Buch, E. (2018). Inequalities of aging: Paradoxes of independence in American home care. New York University Press. Collins, P. H. (2016). Aprendendo com a outsider within: a significação sociológica do pensamento feminista negro. Revista Sociedade e Estado, 31(1), 99–127. Das, V. (2007). Life and words: Violence and the descent into the ordinary. The University of California Press. Engel, C. (2022). Hiperprivatização do cuidado: projetos de cuidado das demências e seus efeitos. Revista Estudos Feministas, 30, 1–14. Fazzioni, N. (2021). Nem bom, nem mau: reflexões sobre ‘arranjos de cuidado’ materno em dois contextos de pesquisa. (Syn)thesis, 14, 18–27. Fietz, H. (2020). Construindo futuros, provocando o presente: cuidado familiar, moradias assistidas e temporalidades na gestão cotidiana da deficiência intelectual no Brasil. [Doctoral dissertation, Department of Anthropology]. UFRGS, Porto Alegre, Brazil. https://lume.ufrgs.br/ handle/10183/218580, 2020 ELSI, 2018. Fiocruz. Estudo Longitudinal da Saúde dos Idosos Brasileiros. Retrieved December 2, 2022 from https://elsi.cpqrr.fiocruz.br/ Fleischer, S., & Lima, F. (2020). Micro: contribuições da antropologia. Athalaia. Fonseca, C., & Fietz, H. (2018). Collectives of care in the relations surrounding people with ‘head troubles’: Family, community and gender in a working-class neighborhood of southern Brazil. Sociologia & Antropologia, 08(1), 223–243. Gonzales, L. (1984). Gênero e raça. Racismo e sexismo na cultura brasileira. Revista Ciências Sociais Hoje, Anpocs, 223–244. Haraway, D. (2016). Staying with the trouble: Making kin in the Chthulucene. Duke University Press. Hochschild, A. (2019). Amor e Ouro. In G. Debert & M. Pulhez (Eds.), Desafios do Cuidado: gênero, velhice e deficiência (2nd ed., pp. 61–80). UNICAMP/IFCH. Kittay, E. (2011). The ethics of care, dependence, and disability. Ratio Juris, 24(1), 49–58. Leibing, A. (2017). Successful selves? Heroic tales of Alzheimer’s disease and personhood in Brazil. In S. Lamb (Ed.), Successful aging? Global perspectives on a contemporary obsession (pp. 203–217). Rutgers University Press. Mattingly, C. (2014). Moral laboratories: Family peril and the struggle for a good life. The University of California Press. Mol, A., Moser, I., & Pols, J. (2010). Care: Putting practice into theory. In A. Mol, I. Moser, & J. Pols (Eds.), Care in practice: On tinkering in clinics, homes, and farms (pp. 7–25). Verlag. Molinier, P. (2012). Ética e trabalho do care. In H. Hirata & N. Guimarães (Orgs.), Cuidado e cuidadoras, as várias faces do trabalho do care (pp. 29–43).: Atlas. December 2, 2022 from https://elsi.cpqrr.fiocruz.br Murphy, M. (2015). Unsettling care: Troubling transnational itineraries of care in feminist health practices. Social Studies of Science, 45(5), 717–737.

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Nicholls, E., Henry, J., & Dennis, F. (2021). ‘Not in our name’: Vexing care in the neoliberal university. NJSTS, 9(1), 65–76. Piepzna-Samarasinha, L. L. (2018). Care work: Dreaming of disability justice. Arsenal Pulp Press. Pols, J. (2015). Towards an empirical ethics in care: Relations with technologies in health care. Medicine, Health Care, and Philosophy, 18(1), 81–90. Puig De La Bellacasa, M. (2017). Matters of care: Speculative ethics in more than human worlds. University of Minnesota Press. Reis, V. (2018). Febraplan e a disputa real pelo Sistema de Saúde Universal: Considerações sobre a atuação recente do setor privado nas políticas de saúde. ABRASCO. Retrieved November 15, 2019 from https://abrasco.org.br/febraplan-e-disputa-real-pelo-sistema-de-saude-universalconsideracoes-sobre-atuacaorecente-do-setor-privado-nas-politicas-saude/ Santos, S. M. A., & Rifiotis, T. (2006). Cuidadores familiares de idosos dementados: uma reflexão sobre dinâmica do cuidado e da conflitualidade intra-familia. LEVIS - Laboratório de Estudos das Violências, Centro de Filosofia e Ciências Humanas da Universidade Federal de Santa Catarina (CFH-UFSC). Simplican, S. (2015). Care, disability, and violence: Theorizing complex dependency in Eva Kittay and Judith Butler. Hypatia, 30(1), 217–233. Star, S. L. (1999). The ethnography of infrastructure. American Behavioral Scientist, 43(3), 377–391. Zelizer, V. (2011). Economic lives: How culture shapes the economy. Princeton University Press.

Cíntia Engel is a Brazilian social and medical anthropologist, currently a Visitor Scholar at the University of Texas Medical Brunch. She works at the intersection of the anthropology of care, Feminist Science and Technology Studies, and Health Humanities. Her research interests include geriatric and family care, dementia, policies of care, and care through pharmaceuticals. She is currently working on a project about the care turn for pharmacists. In parallel, she is a consultant for the United Nations Population Fund, researching Assisted Reproduction. Additionally, she is a member of an independent institute for collaborative research, the imuê—Women and Economics Institute. Helena Fietz is an assistant professor of anthropology at Louisiana State University, United States. She completed her Ph.D. in sociocultural anthropology at the Universidade Federal do Rio Grande do Sul/UFRGS in Brazil. Her work spans sociocultural and medical anthropology to examine how disability, care practices, and family expectations intersect with public policies and representations of disability in Brazil and the US, with particular attention to the roles of gender, race, class, and generation in this entanglement. Her broad research interests include medical anthropology, science and technology studies, disability studies, anthropology of care, health inequities, and applied anthropology.

Chapter 9

Encouraging Care and Allowing Space: On the Aftermath of Careful Engagement Doris Lydahl

Starting at One End Practices of care need to be carefully attended to, otherwise there is a risk that they erode. If not attended to in their own specificities, “they will be submitted to rules and regulations that are alien to them” (Mol et al., 2010, p. 7). One could argue, therefore, that to study care practices can itself be a form of engagement, or intervention, because by attending to care one makes sure it does not crumble. Over the last years, my scholarly intention has been to study care practices with care—something I understand as “an affective state, a material vital doing, and an ethico-political obligation” (Puig de la Bellacasa, 2011, p. 90). This means that I have studied care practices while also using care as a theoretical sensibility—doing careful engagement. In other words, I have been “thinking about care with care” (Eidenskog, 2021). Despite my careful engagements, I have (like many other researchers) experienced a sense of “so what?” after finishing engaged research projects. I have often doubted if my engagements have had more long-term effects, as well as wondering whether these were the effects I had anticipated and hoped for. In this chapter, I will reflect on the phenomena of unexpected engagement, or, put differently: the aftermath of careful engagement unfolding in unexpected directions. I will do so by drawing on my experiences of a research project conducted on the use of welfare technology in eldercare in which I was an embedded researcher in a municipal co-operative organisation. There are two potential ways this chapter could be started. I could either start at what I thought was the end of my engagement with a mid-sized Swedish municipality, and their use of welfare technology in eldercare. Or, I could start at the actual

D. Lydahl (✉) Dept of Philosophy, Linguistics and Theory of Science, University of Gothenburg, Gothenburg, Sweden e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_9

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aftermath of my engagement. Let’s keep the actual aftermath on hold for a while and start at the presumed end. It was a dark and gloomy day in January. I was just weeks away from giving birth and about to start my parental leave when I received an email from my contact person in the municipality. The email informed me that the directors of eldercare in the municipality had decided to keep the report I had just produced for them as an internal document rather than publishing it openly on their web. They were afraid that the report would make the citizens of the municipality worried about the safety of the eldercare being provided, my contact wrote, and therefore had felt it was better kept for internal discussion only. I felt like I had failed. Drawing inspiration from empirical ethics (Pols, 2015), I had set out to write a report in which I described the good care delivered with welfare technology, while also accounting for the various and quite serious problems that arose in using those technologies (Martin et al., 2015) which I had also encountered during my fieldwork. Staying true to my feminist Science and Technology Studies inclinations (STS, hereon), I had, per Puig de la Bellacasa (2017), thought a lot about what I was encouraging care for, as a researcher, and had therefore tried to provide a double vision of care (Lindén & Lydahl, 2021) as delivered with welfare technology. A double vision of care is a vision which is “both situated and critical, staying with the practices, specificities and potentialities of care while simultaneously critically interrogating those practices when needed” (Lindén & Lydahl, 2021, p. 8). When I received the email, I felt that my ambitions of being a carefully engaged researcher had come to nothing. I was convinced that the report would be stored away somewhere, soon to be forgotten. In any case, I wrote a polite answer that I understood and respected their decision. Since I was just about to leave work to give birth and take care of my baby, I had no time to negotiate with the municipality, no time to produce something that could be distributed to the eldercare workers, at least. I had no time for anything. All I could do was to quietly accept their decision and wait. I would wait until I was back at work and able to contact them again. So, what was the project about? How did I employ a double vision of care? What did I write in the report that was so potentially upsetting? And what was the aftermath? In what follows, I will answer these questions, arguing that two important aspects of careful engagement are to make explicit and stay with what you as a researcher care for, while also moving slowly, and thus allowing space and time for others to gather and express their own cares, and carefully engage with the results themselves.

The Project: Values of Welfare Technology Welfare technology is the latest state of the art eldercare practice in Nordic health and welfare policy (Kamp et al., 2019). The concept welfare technology itself is very broad and there is no consensus on how to define it in the Nordic countries. In 2015, the Swedish National Board of Health and Welfare published a definition of welfare

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technology as “digital technology aiming to contribute positively to the welfare of the population by increasing safety, activity, participation and independence for people who have, or risk developing, a disability” (Socialstyrelsen, 2015, author’s translation). The concept was first used in Denmark in 2008 and, just a year later, three billion Danish Crowns were invested to support welfare technology innovation projects in Danish municipalities. The Danish approach is argued to be a “centrally driven process, with double focus on standards and performance measurements on one hand and interorganizational learning the other hand” (Kamp et al., 2019, p. 2). In Norway, the concept of welfare technology was first used on a policy level in 2011, with the publication of the governmental report “Innovation in Care” also known as the Hagen-committee. The report had a clear political strategy of investing more funds in new technologies in municipal services, and in changing legislation so as to be able to use, for example, GPS-technologies in dementia care. Generally, the Norwegian strategy “highlights innovation, learning, and development and competences” (Kamp et al., 2019, p. 2). In comparison, Sweden has had a less well-defined approach. In Sweden, welfare technologies are defined as digital technologies aiming to contribute to the welfare of the population by increasing safety, activity, participation and independence for people who have, or risk developing, a disability. The Swedish government regards welfare technology “as the prerequisite for meeting the demands of future Swedish homecare and healthcare” (Frennert & Baudin, 2021, p. 1221), and hundreds of millions of Swedish Crowns have been allocated to stimulate the digital development in eldercare services in the course of the last decade. Yet, a relatively large percentage of the welfare technology available in municipalities are in pilot projects (Socialstyrelsen, 2021, p. 14), and a broader introduction of welfare technology is slow. While many different activities and pilot tests are taking place, it is also difficult to access the results of these tests and activities. Sweden lacks a systematic coordination and evaluation of the use and introduction of welfare technology. Some years ago, I received funding to investigate the different values related to welfare technology, and how the introduction and use of welfare technology influence care practices. I wanted to investigate what values were being enacted and protected, but also what values are being minimised and impeded within eldercare, and how welfare technologies supported or diminished enactment of these values (Pols, 2015). Rather than following one or two specific welfare technologies, the project explores all technologies which the practitioners define as a welfare technology. The project is funded by a research program, called the RJ Flexit Program, dedicated to making the humanities and social sciences relevant. This program provides the researcher with 3 years of funding to do a research project focused on an issue identified by a host organisation outside the academy. As a funding stipulation, the researcher spends 2 years in a host organisation, during which she or he is formally employed by the host, and in the last year, she or he returns to the university. Like Viseu (2015), I have been an integrated and embedded researcher. Rather than being embedded in a municipal eldercare, I have been an embedded researcher in the research and development department at a co-operative

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organisation uniting 13 municipalities in western Sweden, called the Gothenburg Region. The task of this organisation is to promote co-operation over municipal borders and provide a forum for the exchange of ideas and experience within the region. One of the ideas which the organisation was seeking to promote co-operation over was an increase in the digitalisation of eldercare, and an increase in the use of welfare technologies in the region. The organisation had high hopes that my project could be made useful for the municipalities to these ends. One month after starting up the project, the Covid-19 pandemic hit. To say the least, eldercare in Sweden was severely affected by the pandemic. The Swedish government appointed a panel, called the Corona commission, to investigate the response to the coronavirus and to evaluate the response from the government and other authorities. The key finding of the first report was that Sweden failed to protect the elderly due to structural shortcomings that had been well-known for a long time (SOU, 2020:80). And there I was, in the midst of an eldercare crisis, with questions that felt extremely small and mundane in relation to such an important moment in time. But, at the same time, I also felt that my study was more important than ever. This is because, during the ongoing pandemic, more and more municipalities decided to implement various kinds of welfare technologies in eldercare.

Not Taking Sides but Encouraging Care While my ambition in the project has never been to carry out a situated intervention (Zuiderent-Jerak, 2015), I have been inspired by Zuiderent-Jeraks call for engaged research that is “equally non-strategic and non-detached” (Zuiderent-Jerak, 2016, p. 76). One strategy to prevent strategic engagements (i.e., engagements which seek to achieve a predefined normative goal), suggested by Bruun Jensen (2007, p. 239), is a process which he describes as “sorting attachment”. Here, sorting “refers to the practical activity of figuring out how to engage with other organizations, institutions or agendas as part of conducting research” while the word ‘attachments’ connotes that “no such engagement is innocent”. I see similarities between Zuiderent-Jerak’s non-strategic and non-detached engagement, Bruun Jensens sorting attachment, and recent discussions about care in STS. In their now seminal edited volume Care in Practice—on Tinkering in Clinics, Homes and Farms, Mol, Moser and Pols (2010) are concerned about the scholarly lack of attention to care. If care practices are not carefully attended to—by scholars and in general—Mol et al. write: “there is a risk that they will be eroded” (Mol et al. 2010). As such, to study care practices can, as I argued in the introduction, itself be seen as a form of careful engagement or intervention. Over the last ten years, and during this project, my scholarly intention has been to study care practices. In particular, I have been inspired by Jeannette Pols’s work on empirical ethics. The empirical ethics object of research is good care, but rather than defining what ‘good care’ is, it studies good care empirically and ethnographically (Pols, 2015). This means being attentive to how good care is shaped in daily

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practices by people, technologies and other artefacts, while also scrutinising the various notions of good that may exist within the same practice. Willems (2010) calls this studying varieties of goodness. While studying goods could be interpreted as a descriptive approach, Pols talks about the promises of being re-scriptive and suggestive (Pols, 2015). Therefore, I would argue empirical ethics is an engaged approach as it “aim[s] to interfere in the practices studied by opening up implicit notions of good care for (self) reflection” (Pols, 2008, p. 52), and aims to facilitate tinkering by “making suggestions and transporting lessons learnt from other practices” (Pols, 2015, p. 88). It is also similar to sorting attachments in that it has to do with unpacking the care and attachments circulating “out there” among the actors in the practices which we are embedded in or tethered to (Martin et al., 2015). All this being so, I did not want to be naïve about eldercare in Sweden and the problems that have been identified with it. It is not enough to look at the goods of care, what is one to do with the bads of care (or rather: the various problems that arise in practices of care)? How is one to do carefully engaged research, then? To this end, critical care studies are helpful. Critical care studies, which have been developed in feminist STS, underscore that care is a “selective mode of attention” and that care has a “darker side” (Martin et al., 2015). Importantly, critical care studies also encourages the researcher to be self-reflective and think about what “we are encouraging care for” (Puig de la Bellacasa, 2011). Scholars are thus encouraged to think about our own care and concerns: what worlds we, as researchers, want to question, encourage and strengthen through our research and our engagements. LopézGómez suggests using care as a heuristic for engaged scholarship. Care, taken as a heuristic, can be employed for “taking sides, participating, acting, making a choice, taking a position, but without taking for granted a general or fundamental principle on which these actions would safely and coherently be grounded” (López-Gómez, 2020, p. 10). Scholars such as Zuiderent-Jerak (2015, p. 13), drawing on Howard S. Becker, have insightfully warned against the sociological inclination of uncritically and routinely siding with the underdog. To side with the underdog in this project would perhaps be to side with those whose voices were less heard in discussions and decisions about welfare technology. So, if I was supposed to be more unsentimental (Zuiderent-Jerak, 2015), non-strategic (Zuiderent-Jerak, 2016), and not use a fundamental principle (LópezGómez, 2020), how then was I to proceed? In my own thinking about care—and with care—with Lisa Lindén, we have suggested what we call a double vision of care (Lindén & Lydahl, 2021). This vision underscores the importance of understanding care in its own specificity and context, paying due attention to what good care is understood to be in practice. However, the double vision adds an important dimension to this by emphasising the need to critically interrogate care practices when necessary—not using care “as a safe grounding but as a situating sensibility” (Lindén & Lydahl, 2021, p. 9). This has been my heuristic for careful engagement in the project about the values of welfare technology.

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Fieldwork and Workshop Early in the project, three municipalities expressed an interest in participating. In this chapter, however, I will only focus on my experiences of engaging with one of the municipalities. I was invited to a meeting with the two directors of eldercare in the municipality to talk about my project and what it would mean for them to participate. During the meeting, I introduced my project plan. Together, we discussed what kind of methods could be suitable for carrying out a research project in eldercare during a global pandemic. At the time, visitors were not allowed into nursing homes, and homecare workers had to follow strict protocols to hinder the spread of the pandemic among caretakers. We agreed that I would start carrying out interviews with administrators, managers and care workers at a distance, through digital videocalls and telephone calls. We also discussed what sort of knowledge and outcomes would be useful and valuable for them. Rather than deciding on a specific outcome, we agreed that I would stay in close contact with a method developer and IT-ambassador during my fieldwork (from a distance) to talk about the results of my study and how this could be used by the municipality. This ambassador was, in other words, to function as my contact person or liaison throughout the engagement. Soon after, my fieldwork began. Since I was not able to do observations, and since I could not meet my interviewees, I tried to make the interviews as ethnographic as possible. In the ethnographic form of interview, people discuss their “lives, beliefs, values, opinions, experiences, practices and more in a focused way” (Pink, 2015, p. 80). The approach focuses on the mundane, practical and the everyday. To this end, I asked the interviewees to talk about their everyday work, what a normal day at work usually looked like, what type of welfare technology they encountered in their everyday work, and what routines they had. This opened up the interview so I could ask follow-up questions about ethics and values. I started interviewing administrators and managers, who then helped me recruit assistant nurses working both in nursing homes and homecare services. Though I asked the managers to set aside time for the assistant nurses to do the interview during their working hours, some of the nurses chose to do the interview on their spare time as they felt the study was important, and that this would allow them to focus more on the interview. It was obvious that I was not the only one engaged. The nurses were also engaged and cared for my project. Throughout my interviews, and when doing an initial analysis of them, I tried to keep with the double vision of care, and to remain aware of the two layers of care (both the care “out there”, and as a theoretical sensibility). The nurses gave several examples of how good care was delivered with welfare technology. For example, tablet computers were used to look at videos and pictures to stimulate memories and recognition for the older persons. They were also used as tools for daydreaming together, for example by “travelling” through Google maps. In this way, the technologies were used both to stimulate memories, but also to strengthen and build relationships with the older persons. Welfare technologies such as personal alarms

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and systems for signing medical and social interventions were also perceived to make care more safe and secure. However, I also noted darker sides of the care that came with welfare technology (Lydahl, 2023). Nurses talked at length about their stressful working environment, where the different technologies seldomly functioned as the “plug-n-play” solutions they were first imagined to be (cf. Sánchez-Criado et al., 2014), but instead needed both work and tinkering to function (Ertner, 2019). One such problem was how the different systems often lost their internet connection, forcing the nurses out of the systems and needing to login over and over. In addition, the alarm system often had server failures, making the nurses working in nursing homes have to check in on all residents once an hour until the alarm system was up and running again. Managers also talked about how the incompatibility of different technologies and systems led to frustration and stress. After a spring of doing interviews and rudimentary analysis of my material, I reached out to my contact person. As part of my careful engagement strategy, I wanted to invite managers and other persons in strategic positions to react to my tentative results and analysis. By their reactions, I hoped to be able to better sort their attachments and map their cares and concerns. My contact person helped me in setting up the workshop, which also had to be held at a distance, through a videoconferencing tool. I was nervous before the workshop, since the results and analysis I would be sharing with the invited participants were not just positive but critical too—as the double vision approach necessitated. All unit managers of eldercare in the municipality that I had interviewed, and some administrators, appeared at the workshop. Some of them sat together in front of a laptop. Not all were able to get their cameras to work. All in all, there were around eight persons present. We started with a quick round of presentations, but some had problems with their sound, and others with their wi-fi, and not everyone was getting through. I started off the workshop by giving a short presentation of my tentative results and analysis. I talked about the different sorts of welfare technologies used in the municipality and about possibilities and problems of delivering care with these technologies. I gave examples from the interviews I had carried out, reading quotations from nurses as well as managers. After about 15 min, I opened the presentation up for discussion, asking if they recognised any of what I had been talking about, if there were things that surprised them, and if there were things they disagreed with. One of the managers, whom I had cited during the presentation identified herself. The citation was about the incompatibility of technologies and read as follows: One system is not compatible with the next, which makes it so unmodern. It becomes very difficult to learn a whole new system, a whole new tool. It doesn’t matter if it’s something for the older persons or for the staff. And when you point this out, it takes so much time. We need to log in to so many systems. Isn’t there a way of merging them? (Excerpt from interview with manager)

The other managers chimed in. This was an issue they recognised and were concerned about. The rest of the workshop was spent mostly talking about this

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issue. No one raised any disagreement with my tentative analysis. I was a bit surprised about how well my presentation had been received, and to the extent my interpretations seemed familiar to the managers. When I asked if it would be possible to do some actual in-situ observations, the managers did not hesitate. At the time, the Covid-19 pandemic was less intense and nursing homes had started welcoming visitors again. Of course, I should do observational studies! But it must happen quickly since I was pregnant, one of the managers told me. In eldercare, when someone entered their 20th week of pregnancy, they were considered a risk group for Covid-19, and were no longer allowed to work. Perhaps I could come to her unit, a nursing home, the very next week, she suggested, to which I happily agreed.

. . .and Fieldwork Again! With that, I went out in field, this time not through my screen but in person. My observation study confirmed and gave practical illustrations supporting the interviews I had carried out. During my observations, the goods I had noted during the analysis of the interviews intensified. At the nursing home, not only did I get to listen to stories about the connections the technology enabled but, for example, I even got to witness the joy of a group of residents singing along to a 60s themed playlist streaming from the tablet computer to the TV. However, the bads, or problems, noted in the interviews were also reinforced. I got to see and hear the constant beeping of social alarms, the frustration when the nurses lost their internet connection and had to log in to the systems again, and the tinkering needed for the technology to function. Importantly, I was also made aware of a new welfare technology which was to be introduced in all nursing homes in the municipality: the digital medicine cabinet. The municipality had decided that all assisted living facilities should install these digital cabinets, “to increase safety”, by making the management of medicine more secure and efficient. The nurses I followed talked a lot about this cabinet and made sure I was able to see how it worked—as well as the problems they had with it. Instead of using physical keys, the digital medicine cabinets worked digitally through an app which the nurses logged into, selected the resident needing the medication, pressed unlock on the app while also pressing a small black button on the cabinet. Nurse Åsa talks about working with the digital medicine cabinet. Åsa is interested in technology and is one of the super users of the cabinet. Still, she is a bit hesitant because she is afraid of what will happen if a nurse is not able to unlock the cabinet. Usually, the nurses fix these problems by helping each other. Åsa can for example change batteries in the cabinet lock and another colleague can unlock nurses that have been blocked from opening the cabinet due to having used the wrong password too many times. Åsa says that the system is most frail during nights and weekends because “then it is more difficult to help each other out”. I ask what happens if they cannot open the cabinet. Åsa says that there is way of forcing the cabinets open but that the nurses have not gotten to know how this is done. “We have been told to call the registered nurse to come with new medicine if we cannot open a cabinet.

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But what if the resident needs an EpiPen or insulin? What to do then?” she asks (excerpt from field notes 2021-09-02).

Åsa and other nurses I had observed and interviewed were worried about the potential harm the medicine cabinet could cause. While no incident had happened in the municipality, the nurses worried about what could happen if they were not able to open the medicine cabinet and distribute the medicine in time. For them, the cabinet did not seem to increase safety, but to the contrary, created a decreased sense of safety.

The Report During the workshop we discussed how I could make myself useful for the municipality. One of the directors suggested that I should write a report based on my interviews and the upcoming fieldwork. The other managers agreed. I was not surprised. Research reports are a common and sought-after technique to contribute to the field (Downey & Zuiderent-Jerak, 2017) within the context I was working. The Gothenburg Region publishes several research reports each year, which, as a rule, are commissioned and funded by municipalities. These reports have credibility in the region, and municipalities seem to take pride in commissioning the reports. In conversations with my contact person, we decided that I would write the report with a general public in mind, as the municipality planned to publish the report openly on their website. It seemed as if the directors of eldercare and my contact person alike were proud that a researcher had investigated their workings and therefore wanted to exhibit my results publicly. Given this this apparent enthusiasm, writing the report felt like a big responsibility. I knew that what I was writing would likely have an impact on the municipality and I was therefore keen on writing about care with care. Looking for inspiration, I came to think about a presentation at the combined European Association for Study of Science and Technology and Society for the Social Studies of Science (EASST/ 4s) conference in virtual Prague in 2020 and the open panel “Articulating and relating to different forms of the good in bad situations”. In his presentation Dick Willems stressed that articulating goods in bad situations makes sense if the situation can be improved. He argued that by articulating goods in bad situations, the goods are not only strengthened but the bad can also be weakened and transformed. In contrast to that, in writing the report, I did not see how the situation could be improved by only articulating the good as there were situations that were not only bad but also potentially dangerous. I therefore decided to make use of my double vision (Lindén & Lydahl, 2021) and articulate both the goods and bads in care delivered with welfare technology. I structured my argument under the headlines “Possibilities”, “Problems”, “Facilitators” and “Barriers”. Throughout the report I made use of interview excerpts and fieldnotes to illustrate my argument. In the “Possibilities” section, I discussed how

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the technology helped with building relationship while also paving the way for more secure documentation. In the “Problems” section, I highlighted the problems and adverse aspects of welfare technology in care, pointing to unstable internet connections and servers shutting down, the difficulty some of the residents had in using the alarm system, as well as the problem with the digital medicine cabinets. In the “Facilitators” section, I wrote about the importance of education and collaborative tinkering. And, in the “Barriers” section, I argued that the incompatibility of systems and time pressures act as barriers in successful use of welfare technology. The report was 25 pages long and followed the structure and format of other reports produced at the Gothenburg Region. Before sending the report to the municipality, the manager of the research and development department at the Gothenburg Region read, commented, and approved the report. Her revisions were of minor character, and she had no objections regarding my analysis and conclusions. Since the co-operative organisation in which I was embedded had sanctioned my report I was surprised—and felt like I had failed—when I received the email from my contact person informing me that the report would be kept only for internal use. The directors of eldercare had reacted primarily to what I had written about the problems with the personal alarm system server and the medicine cabinets. This could potentially upset citizens of the municipality and make relatives of eldercare recipients worry about the safety of care for their next of kin. My contact person wrote that they therefore thought it was better if the report was circulated internally to the relevant stakeholders. However, he also wrote, I was free to publish an anonymised version of the report on the Gothenburg Region website, if I wanted to. The municipality would in other words not openly publish the report as was intended, but a version of the report where the municipality was not mentioned was to be published by the Gothenburg Region.

The Actual End About 9 months after my report was published, I had started working again and had decided with my contact person to come visit him to discuss how issues relating to welfare technology had developed in the municipality. During my parental leave my contact person had been promoted to digitalization coordinator for the social services in the municipality. After showing me some PowerPoint slides about how he had been working on operationalising the municipality’s digitalisation strategy, my contact person said: “And I guess you have wondered what happened with your report”. I confessed that I had. He said he wanted to show me something, went out of the office in which we were meeting, and came back with a binder and a proud smile on his face. “Well, I am not sure how many actually read your report!” he explained “But, some read it and felt positively about different things”. In conversations with the eldercare directors, my contact person—in his capacity of digitalization coordinator—had been assigned to act on and work with the report as he saw fit and in an informal manner. There was no official decision to act on the report, but

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rather the coordinator could incorporate the lessons from the report in his work to his own liking. “What I took from the report was that we needed to work with our continuity plans”, he told me. Continuity plans are documents consisting of critical information an organisation needs to continue operating during a crisis. Now, he described, there was a plan for what to do if, for example, a nurse cannot open a digital medicine cabinet. He showed me the binder which was called “Continuity plan—when systems shut down or in crisis”. The first page consisted of a map showing how to orient oneself regarding the information in the binder. Then, there followed instructions for what to do when a system starts shutting down, or in a crisis, for every single digital system in eldercare in the municipality. He told me that he made a hundred copies of the binder before summer and that every eldercare manager in the municipality had been informed to sign for the binder as soon as possible. So far, more than half had collected and signed for the binder. My report had made an impact, but the aftermath was not what I had expected. While I had thought that the best way to go with the report was outreach, and that all managers read the report and have the opportunity to react to it, the actual aftermath was much more localised and situated. By not insisting on my own idea about how and what the report should be used for, space had been opened for my contact person to find a way of tinkering with the outcomes and using it in a way that was much-needed for the municipality. Though perhaps not so many people had gotten to read my double visioned report, one key person—my contact person—had indeed read it with care. My parental leave thus turned out to be a blessing in disguise. Turning a double vision, now towards myself and what I had anticipated for the report by making it public, I can see in hindsight that I too had cared for some things and excluded others. While I had cared for public exposure and outreach, one of the things that would have been excluded if the report had been made public was its utility for management. Because if the report was published, it is possible that instead of writing the continuity plans, the coordinator would have to spend this time reassuring citizens and talking with the press. But, since I did not insist on publication, my contact person, who was also part of management in his capacity as digitalization-coordinator, was given time and space to find a way of caring for the report and making it useful for the municipal eldercare and its management, more on their own terms. He had done so by focusing on the adverse effects of care made with welfare technology which I had highlighted in my report, specifically on the problem of systems breaking down and developed a local solution to these problems: the continuity plans.

Reflections on Aftermaths and the Importance to Move Slow In this chapter I have reflected on the aftermath of careful engagement unfolding in unexpected directions, drawing on my experiences of a research project on welfare technology eldercare and the writing and unexpected journey of a research report.

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While the actual aftermath of my careful engagement was rather accidental and caused by my parental leave, a few things can be learned from my experiences. First, I want to reaffirm, as argued by Mol and colleagues (Mol et al., 2010), that studying practices of care is important. To study care is to shed light on practices that are central to daily life, but if care is only “talked about in terms that are not appropriate to the specificities, they will be submitted to rules and regulations that are alien to them” (Mol et al., 2010, p. 7). For me, this means that there are two layers of care: care in practice and care as an analytic or theoretical discourse (Martin et al., 2015). Carefully attending to practices of care, or to study care with care, is a form of engaged research. Second, as Lisa Lindén and I have argued, it is important to regard care not “as a safe grounding but as a situating sensibility” (Lindén & Lydahl, 2021, p. 9). To employ a double vision of care as a heuristic for careful engagement implies understanding care in its own specificity and context while also critically interrogating these care practices when necessary. This double vision was beneficial at all stages—during my fieldwork, in analysing my empirical material, and when writing the report. Applying such double vision has allowed me to see, and later describe, the details of delivering care with welfare technology. It allowed me to see and describe the good practices, adding to important previous literature about how care is materially embedded (Cleeve et al., 2018; Driessen, 2019; Van Hout et al., 2015), while also attending to, and articulating, the bads of delivering care with welfare technology. In so doing, I made explicit and stayed with what I, as a researcher, cared for. Third, my parental leave compelled me to move slowly (De Castro et al., 2008). In research projects like my own, with high expectations on usefulness by both funders and other actors, there is a risk that the researcher is obligated or coaxed into speedy action. In my own work, I tried to counterweigh this by not offering solutions in my report but instead using the double vision to open up implicit notions of good and bad care for reflection. By doing nothing when my report did not go public, the slowness of my engagement increased. Doing careful engagement is also about insisting on slow science and not offering quick fixes (Stengers, 2018). One aspect of this is that moving slowly opens space and time for those you engage with to gather and express their own care—engagement that you can later (slowly) engage with again.

References Bruun Jensen, C. (2007). Sorting attachments: Usefulness of STS in healthcare practice and policy. Science as Culture, 16(3), 237–251. Cleeve, H., Tishelman, C., Macdonald, A., Lindqvist, O., & Goliath, I. (2018). Not just things: The roles of objects at the end of life. Sociology of Health & Illness, 40(4), 735–749. De Castro, E. V., Goldman, M., & Lebner, A. (2008). Slow motions. Comments on a few texts by Marilyn Strathern. Cambridge Anthropology, 28(3), 23–42. http://www.jstor.org/stable/23820 868

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Downey, G. L., & Zuiderent-Jerak, T. (2017). Making and doing : engagement and reflexive learning in STS. In The handbook of science and technology studies 2017 (Vol. S. 223–251). Driessen, A.-E. (2019). A good life with dementia: Ethnographic articulations of everyday life and care in Dutch nursing homes [Doctoral dissertation, University of Amsterdam] Eidenskog, M. (2021). Careful place: Matters of care built into the socially sustainable city district. Nordic Journal of Science and Technology Studies, 9(1), 26–38. Ertner, S. M. (2019). Enchanting, evoking, and affecting: The invisible work of technology implementation in homecare. Nordic Journal of Working Life Studies, 9(S5), 33–47. Frennert, S., & Baudin, K. (2021). The concept of welfare technology in Swedish municipal eldercare. Disability and Rehabilitation, 43(9), 1220–1227. Kamp, A., Obstfelder, A., & Andersson, K. (2019). Welfare technologies in care work. Nordic Journal of Working Life Studies, 9(S5), 1. https://doi.org/10.18291/njwls.v9iS5.112692 Lindén, L., & Lydahl, D. (2021). Care in STS. Nordic Journal of Science and Technology Studies, 9(1), 3–12. López-Gómez, D. (2020). What if ANT wouldn’t pursue agnosticism but care? In A. Blok & C. Roberts (Eds.), The Routledge companion to actor-network theory. Routledge. Lydahl, D. (2023). Good care and adverse effects: Exploring the use of social alarms in care for older people in Sweden. Health: An Interdisciplinary Journal for the Social Study of Health Illness and Medicine. published online ahead of print. Martin, A., Myers, N., & Viseu, A. (2015). The politics of care in technoscience. Social Studies of Science, 45(5), 625–641. Mol, A., Moser, I., & Pols, J. (2010). Care in practice : On tinkering in clinics, homes and farms. Transcript. Pink, S. (2015). Doing sensory ethnography (2nd ed.). Sage. https://doi.org/10.4135/ 9781473917057 Pols, J. (2008). Which empirical research, whose ethics? Articulating ideals in long-term mental health care. In G. Widdershoven (Ed.), Empirical ethics in psychiatry (pp. 51–68). Oxford University Press. Pols, J. (2015). Towards an empirical ethics in care: Relations with technologies in health care. Medicine, Health Care and Philosophy, 18(1), 81–90. Puig de la Bellacasa, M. (2011). Matters of care in technoscience: Assembling neglected things. Social Studies of Science, 41(1), 85–106. Puig de la Bellacasa, M. (2017). Matters of care: Speculative ethics in more than human worlds. University of Minnesota Press. Sánchez-Criado, T., López, D., Roberts, C., & Domènech, M. (2014). Installing telecare, installing users: Felicity conditions for the instauration of usership. Science, Technology, & Human Values, 39(5), 694–719. Socialstyrelsen. (2015). Socialstyrelsens termbank. https://termbank.socialstyrelsen.se/?TermId=3 85&SrcLang=sv Socialstyrelsen. (2021). E-hälsa och välfärdsteknik i kommunerna 2021: uppföljning av den digitala utvecklingen i socialtjänsten och den kommunala hälso- och sjukvården. SOU 2020:80 (2020). Äldreomsorgen under pandemin. Stengers, I. (2018). Another science is possible: A manifesto for slow science (S. Muecke, Trans.). Polity Press. Van Hout, A., Pols, J., & Willems, D. (2015). Shining trinkets and unkempt gardens: On the materiality of care. Sociology of Health & Illness, 37(8), 1206–1217. Viseu, A. (2015). Caring for nanotechnology? Being an integrated social scientist. Social Studies of Science, 45(5), 642–664. Willems, D. (2010). Varieties of goodness in high-tech home care. In Care in practice: On tinkering in clinics, homes and farms (pp. 257–276). Transcript. Zuiderent-Jerak, T. (2015). Situated intervention : Sociological experiments in healthcare. The MIT Press. Zuiderent-Jerak, T. (2016). If intervention is method, what are we learning? Engaging Science, Technology, and Society, 2, 73–82.

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Doris Lydahl is a senior lecturer at the University of Gothenburg, Department of Philosophy, Linguistics and Theory of Science, Sweden. Her research focuses on when healthcare policy meets practice and on everyday life and routine work as important locations where politics, science and technology meet and enact their normativities. She has published widely on care, methods and social studies of healthcare and medicine. Her current projects focus the values of digital technologies when introduced in eldercare, and the patient knowledge of long covid sufferers.

Chapter 10

Into a Worm(w)hole: Troubling Careful Engagements at the Museum and beyond Martin Grünfeld

Prologue: Enter a Worm(w)hole What if the mirror Alice passes through in Through a Looking Glass is a wormhole? This has been suggested among others by physicist Michio Kaku (Kaku, 2021). While physicists are increasingly reaching the conclusion that Einstein’s equation leads to wormholes, they remain uncertain about whether wormholes actually exist and where such wormholes, if possible, would transport us except that they would probably be highly unstable (Perkowitz, 2010). This paper, however, is not about the wormholes physicist’s study, but similar to Alice’s wonderous travels, I invite you to travel with me into a worm(w)hole that will take us to a strange museum in reverse, where you will find a philosopher (myself) obsessed with worms eating museum objects, an ambivalent conservator handling and tending to worms while protecting the museum, an artist enabling us hear the inaudible sounds of metabolic processes of worms, and an audience wiggling on the floor mimicking the movements of worms. Yet this is not an imaginary world but part of an ongoing experimental project at Medical Museion in Copenhagen—The Living Room—that I have been developing in collaboration with a transdisciplinary group of artists, conservators and researchers for the past few years (for more info, see https://www.museion.ku. dk/en/the-living-room_/). In the project, we attempt to develop other ways of caring at the museum and build on a posthuman practice of care as described by Puig de la Bellacasa (Puig de la Bellacasa, 2017) inviting heritage eaters (such as fungi and larvae) to participate in our caring practices. In the project, I have been exploring how to develop ways of caring for objects beyond saving in collaboration with among others, Caitlin DeSilvey who recently called for a rethinking of “care beyond conservation” (DeSilvey, 2017, p. 184). M. Grünfeld (✉) University of Copenhagen, Copenhagen, Denmark e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_10

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Although conservators are acutely aware of the second law of thermodynamics (Campbell & Baars, 2019, p. 169), collections care at museums usually works towards an ideal of saving for perpetuity. While we are not trying to replace “saving” as a mode of caring at museums, our aim is to multiply our practices of care at the museum by learning from living collections in science and bioart, and embracing that nothing lasts forever (Grünfeld, 2022). Although embracing breakdown is potentially a luxury of the privileged living in a relatively stable world, embracing breakdown precisely within such a position can be viewed as an ethical obligation when the earth’s cycles are choking by enduring matter (Puig de la Bellacasa, 2021). In a weird way, the museum can itself be seen as a micro-scale version of an ecosystem choking in enduring things and blocked channels of circulation (Morgan & MacDonald, 2018; Deliss, 2020). In contrast to a way of caring aimed at isolation from temporal agents and life processes, we seek other modes of caring that engage with, instead of suppressing, processes of decomposition. I use “engage with” here to highlight how our practices rely on more than human agencies and environments. However, as I zoom in on our careful engagements with heritage eaters in this essay, our neatly conceptualized experimental engagement of caring beyond saving itself begins to multiply, destabilize, unsettle. What does it mean to care? It is very easy to accidentally conflate care with positive feelings of love and affection (Mol et al., 2010). Yet, care does not always entail positive feelings: “To care can feel good; it can also feel awful. It can do good; it can oppress” as Puig de la Bellacasa points out (Puig de la Bellacasa, 2017, 1). As she explains, care can mean different things to different people and while we can identify ways of caring concretely and empirically, care remains ambivalent. It is precisely this ambivalence and instability of care that I wish to unfold in this essay. Just as wormholes are assumed to be highly unstable, as we travel into the museum in reverse tensions, differences and dilemmas emerge unsettling what it means to engage carefully today at the museum and perhaps beyond. I particularly focus on the acts, tensions and difficulties of our careful engagements with heritage eaters and how they unfold and unsettle modes of caring at the museum. As Mol, Moser and Pols argue, care demands us to pay attention to its specificities in practice and across multiple sites (Mol et al., 2010). In other words, we need to care about how we care in practice: What modes of caring are engaged, which object(s) do we tend to and within which environments? These three dimensions intertwine as we travel through a wormhole transporting us to an uncanny museum hosting the larvae of the Greater wax moth (Galleria mellonella). The careful engagements, I explore in this essay revolve around the making of an installation entitled Worm dome hosting living wax worms developed and created by conservator Amalie Schjøtt-Wieth, sound and performance artist Eduardo Abrantes and myself. In our collaboration each of us brought special skills and interests: Amalie her hands on expertise and knowledge of conservation, insects and risks, Eduardo his artistic and technical knowledge of sonification and performance design, and myself an open set of research questions and yet unknown skills for cultivating wax worms at home. As such the making of the installation not only developed as a creative process but also as research-in-action, where I contributed as

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an equal member or “insider” in our interventions into caring practices at the museum. As Zuiderent-Jerak and Jensen point out, interventions are only enabled to the extent that attachments between practioners inside a practice and researchers are developed (Zuiderent-Jerak & Bruun Jensen, 2007, p. 231). However, if we take an intervention to require someone intervening from the outside, then “mutual engagement” is perhaps a better way to describe our collaboration. But similar to intervention research this engagement was a risky, complex and uncontrollable process (Zuiderent-Jerak & Bruun Jensen, 2007, p. 232). In this essay, I want to highlight how hosting living organisms such as wax worms in the museum opens a worm(w)hole of dilemmas and tensions. Following Murphy, I focus on unease, discomfort and trouble in matters of care as non-innocent even violent forms of engagement (Murphy, 2015, p. 5). When thematizing what it means to care, we must move past positive and innocent formulations. As Murphy shows, we can distinguish between four meanings of care: emotional attachment, providing for or looking after, being attentive or careful, and troubled or worried. While Murphy is focusing on troubling and unsettling of care, I wish to highlight how these meanings travel together in ambivalent modes of engagement in the practical choreography of care. Their specific constellations depend on what Law calls a choreography of care and the environment(s) (e.g., biological, institutional, political, epistemic, artistic) within which they play out. In his exploration of the aspects of care in the culling of animals in Devon during the UK’s foot and mouth epidemic in 2001, Law shows how the objects of care are multiple: care for the animals being slaughtered, the farmers, the self (of the vet) and the bigger picture go together (Law, 2010). These multiple objects of care play out in a choreography of care distributed over time and space, events and actors. Caring engagements change over time and their organization is localized in situated actions. What makes up good care in one specific context can turn into carelessness later. And as Law argues, because multiple objects are being cared for simultaneously, the coherence, consistency and compatibility of caring engagements is chronically uncertain even problematic (Law, 2010, p. 68). The choreography of care, I wish to unfold here is likewise, a chronically uncertain story of troubled, incoherent and incompatible ways of caring for multiple objects (not limited to wax worms but also including museum collections, audiences, ourselves and the environment) within unstable contexts (the home, the institution and the artistic performance) and intertwined modes of engagement. The choreography I unfold here play out over three acts that begin as concrete stories of moments when we were working with wax worms to localize the specificities of our engagements. It develops as three main acts and an epilogue that bring out the different contexts, modes of engagements and objects of care in our grappling with wax worms. Act I, takes place in my home, where I cultivated a small population of worms during the first Covid lockdown in Copenhagen, followed by Act II, in which the wax worms enter the museum for the first time. Meanwhile, Act III focus on performative enactments and arts for noticing as alternate modes of caring engagements. Finally, in the epilogue, I recapitulate the intricate storyline and show how our unsettling dilemmas of caring engagements point towards a bigger picture and

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how our troubles are met by the uncertain and uncontrollable forces of life. However, while the essay develops as a seemingly neat chronological story, I must emphasize that this chronology consists of ambivalent and unsettling modes of careful engagements unravelling in specific events a complex worm(w)hole of unsettling careful engagements at the museum and beyond.

Act I: Inviting Larvae into My Home A small brown cardboard box is thrown at my doorstep. This careless act of delivery stands in contrast to its meticulously organized contents: a heating package securing a stable temperature, bubble wrap to keep the contents isolated and in place, and a small plastic box containing wax worms in a feeding substrate. I follow the guidelines described by the vendor and let the box temperate inside for 3 h at room temperature to make sure that the larvae are not overheating. Meanwhile, I prepare a used tomato sauce jar as their future home: I sterilize the jar, and cut out the middle of the lid substituting it with a flat Bialetti metal filter with tiny holes that secure a steady flow of oxygen into the jar, while keeping the larvae isolated from the rest of my home. I’m now ready to move the larvae to their new home but for some odd reason (or maybe because it is very unusual for me to handle living organisms) I’m doing this on the floor in my living room. Indeed, their presence in my home unsettles my sense of home transgressing an imagined inside/outside boundary and bestows me with an added responsibility to respond to their needs and provide for them. A clear sign of a self-induced yet boundary crossing intrusion into my private sphere is marked by the way I handle the worms using an extraordinarily long teaspoon to avoid direct contact. Inside the small plastic box, the worms are rather difficult to notice as they are completely entangled with their food substrate essentially living in it and tunneling their way through it but as I open the box and begin to handle the worms they quickly liven up. Inside the glass jar, I’ve arranged a piece of honeycomb, which is their natural source of food. After moving them into the bottle, I close the lid, place them in a dark spot behind a book in my bookshelf because they usually live in the darkness of beehives, and hope they will thrive. Already in these mundane preparations, different modes of care show up as I’m simultaneously providing a new home for the larvae and troubled by their possible intrusion into the rest of my flat. The lid, however, not only separates the larvae from the rest of my home but also becomes a hinge of control for me. Gradually my concern for the intrusion of a foreign organism into my home vanishes. Yet my concern does not disappear, rather it becomes directed towards the well-being of the worms and I begin to worry for their lives carefully monitoring the room temperature with a baby alarm for the first few days and providing ad libitum honeycomb for them as they eat their way through the first piece at a surprising pace. Wax worms are regularly used as a model organism in lab science without any ethical formalities because they are excluded from the Animal act of 1986 (Andrea et al., 2019; Wojda et al., 2020). Yet I feel an obligation to provide for them now that I’ve invited them

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into my home. As Haraway notes in When Species Meet, working with lab animals should never leave us in moral comfort, but rather we should be able to respond (Haraway, 2008, pp. 71 and 75). While most of the worms remain actively interlaced in their metabolizing of the honeycomb, one worm distinguishes itself by climbing to the top of the bottle. As it breaks out from the eating bunch exploring the top of the bottle, I feel a weird sense of acquaintance or companionship—I begin to care specifically for this worm looking back at me from the other side of the glass. While my worries for my home becoming infected by larvae decreases multiple other modes of care emerges: I’m providing for the wax worms trying to respond to their needs but not only for their sake also for my own salvation (I’m getting emotionally attached). By now the reader may very well ponder: why invite larvae into my home in the first place? Wax worms are usually sold as a fat delicious, even addictive snack for pets (e.g., geckoes, turtles, toads). I am not a pet owner though and my intentions behind bringing them into my home are different. I have invited them into my home because Wax worms are avid plastivores. They possess the unique capabilities of metabolizing disposable plastic materials (low-density polyethylene, in short LDPE) while maintaining fat reserves and excreting ethylene glycol (Cassone et al., 2022). As with so many other scientific discoveries, the discovery was serendipitous: an amateur beekeeper and scientist—Federica Bertocchini—removed wax worms from her beehive, captured them in a plastic bag and noticed their amazing capabilities as the worms ate their way out and escaped hours later (Goñi, 2017). While wax worms can be conceived as a pest for beekeepers, they also hold a potential to help us manage the increasing amount of plastic waste around the globe. Indeed, they hold a promise for bioremediation using their metabolic capabilities to remove plastic pollution essentially healing life with life. Yet as Puig de la Bellacasa notes, bioremediation involves an element of ambivalence as we may continue to reproduce our pollutive ways of living as long as we see ourselves anthropocentrically as restorers without placing ourselves in the ecosystem as problems (Puig de la Bellacasa, 2021). But Bertocchini’s discovery led to a scientific race to figure out how to develop the first natural solution capable of degrading LDPE (Bombelli et al., 2017) and recently researchers found that a key component in the degradation of plastics by wax worms lies in their saliva (Sanluis-Verdes et al., 2022). This was also the main reason why we were interested in working with wax worms in The Living Room. We wanted to find unusual heritage eaters that could metabolize diverse by-products from Western civilization including discarded materials from the museum collection, disposable lab waste and medical face masks that had begun to pile up in the streets of Copenhagen. To begin exploring their metabolic wizardry, I had invited the worms into my home as we were currently in the middle of a Covidshutdown in Copenhagen. After about a week, when the honeycomb has turned into residues on the bottom of the jar, I introduce a rather different meal—a medical face mask partly made of LDPE. After looking almost dead, grouping together in the leftovers of the honeycomb, the larvae finally begin to show an interest in the weird meal they received. Just as they were entangled in the honeycomb, they are now moving into the medical

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mask—entangling and eating. Yet the outcomes are negligible and as the worms begin to spin silk pupae, it becomes clear to me that it takes more to solve our disposal issues. Meanwhile, the larvae continue their lifecycle from pupae to moths leaving me with a dilemma: if I keep them inside the jar, they will die, yet in the wild they are regarded as a pest. As the worms transform, the objects of care change accordingly: At the moth stage, they no longer need food, but only look for places to lay their eggs. This change means that I no longer need to provide for them, but instead must be concerned with their future and their potential environmental impact. This tension affects my modes of engagement gradually detaching myself from their lives as they lay their eggs inside the jar and die.

Act II: When Wax Worms Meet the Antibiotic Museum Amalie and I are introducing wax worms to their new habitat in the basement of Medical Museion that we are currently developing into The Living Room. We are sitting at a table wearing gloves and removing the surprisingly lively worms from the feeding boxes they arrived in and into a glass desiccator we have prepared as their new home. Desiccators are sealable enclosures used to preserve moisture sensitive materials. Amalie specifically chose this used desiccator from the museum and Eduardo has furnished it not only with laboratory plastic waste that the worms (hopefully) can eat but also various discarded medical objects turning into a playground for the worms to explore. We have been handling larvae for roughly an hour and we are almost done moving 101 larvae to their new home, when I ask Amalie how she experiences this unusual kind of work as a conservator: Me: is it very transgressive to do something like this at the museum? Amalie: yes, this feels pretty transgressive. The thought of the worms in the wrong place, for example in our moulage collection is something I find difficult to handle. [Pause] Amalie (addressing the worms hesitantly but directly): well, so you stay in there buddies. Can we agree on that? Me: and we’ll see you again Monday Amalie: Oh lord ... Amalie: can we prod tiny holes in aluminum foil so they can get oxygen but won’t escape? Maybe with a syringe or needle? Me: Yeah, we can do that. It’s important that we leave it with a good feeling. Amalie: Yes, with a peace of mind.

When we invite living organisms and potential pests into the museum, we find ourselves in a paradoxical situation involving conflicting modes of care. We are tending to the needs of the larvae trying to handle them gently and set up a livable habitat. But as we are introducing a lively hungry organism into the museum space, we are acutely aware of the safety of the on-site museum collections as well. As Amalie’s hesitant but direct attempt to make a deal with the worms (“you stay there buddies”) express, we are essentially torn between creating a livable space for our

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new fascinating friends—a fascination that is expressed several times during our handling of the worms as we note their speed, agility and remarkable hearing as well as their metabolic capabilities of breaking down LDPE plastics—and protecting the museum. For Amalie, the desiccator provides a meeting point between these modes of care connected by the sealant she uses to secure the lid so no one accidentally lets the worms out of their playground imprisonment. Similar to conservation practice as described by Florian (Florian, 1997, p. 3), this act of sealing, containing, isolating is a measure of safety that works objectively to ensure that the larvae stay in place but also works on an emotional level as Amalie is engaged with safekeeping the collections (especially mentioning the wax moulages) as well as her own wellbeing (her “peace of mind”). Because of the potential risk associated with introducing wax worms into the museum space (and to let Amalie sleep peacefully at night), the glass dome is sealed off effectively turning into an imprisoned playground and closed-circuit ecosystem with only oxygen flow demanding the worms to be able to live by themselves without further intervention. Collections care at museums today is about control—a managing of life processes in collections by monitoring humidity, temperature, pests, and so on to establish an ideally antibiotic environment following Lorimer’s definition as “systematic efforts to secure the Human through the control of unruly ecologies” (Lorimer, 2020, p. 2). At museums, however, not merely or primarily securing the human through ecological control but our highly valued artifacts intended to live rich cultural afterlives in exhibitions and research telling old stories and creating new meanings and significance (Pearce, 1999). Managing life at museums is usually organized within a politics of death that privileges the afterlives of objects. A politics of death that inserts a sensible order within which certain aspects of our culture and history become visible, while others remain unwanted, suppressed, exterminated. Within the politics of death, we look at change and decay as processes that negatively affect our heritage, thus organisms such as larvae are unwelcome presences. Larvae are eating machines. For beetles and moths (and other holometabolous insects), the instar larva is the feeding stage, where energy is stored in their fat bodies before pupation (Florian, 1997, p. 33 and 36). They are efficient metabolizers, which turns them into feared heritage eaters capable of munching their way through organic materials and synthetics turning valued artifacts into ecological evidence of a too lively environment. Limiting access and efficient housekeeping are standard management measures to avoid such cultural historical disasters (Florian, 1997, pp. 36–37). So, when we introduce wax worms into the basement of the museum, we are essentially practicing museum care in reverse by introducing a lively organism to the ideally static museum environment. As Amalie also expresses it: handling these worms resembles her usual work, because it demands an intense attention to detail, but usually museum objects don’t flee out of your hands but are supposed to remain static for years to come. And if collections become too lively, in the end care means killing—freezing entire collections to handle pest infestations (Beiner & Ogilvie, 2005). Within the (ideally) antibiotic museum, we are attempting to establish a livable habitat for our population of wax worms. Yet the divergent objects of care—worms

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supposed to be living and artifacts that must remain dead—create a deeply ambivalent situation in which we ideally have to provide for the worms, while remaining attentive to the risk of infestation. When the desiccator environment was sealed off, the fate of the worms was simultaneously sealed. As time progressed our careful engagement with the worms—handling them gently and providing a playful habitat—turned into a potentially careless act of killing. An act of killing catalyzed by conflicting modes of caring for the worms and safekeeping the museum collections. The antibiotic mode of caring as managing risk and safekeeping by isolation at the museum rendered it almost impossible for us to respond to the situation of the tiny ecosystem. As scientific research uncovered a month after our worms begin to die: If we pay attention not just to the metabolic wizardry of the worms but also their well-being, it turns out that wax worms can actually maintain their fat body stores from a LDPE diet yet also suffer from various nutritional deficiencies (missing e.g., amino acids and sugars) resulting in reduced survival and growth (Cassone et al., 2022). While the worms are dying, we can only watch from the outside as we struggle to reopen the sealed off ecosystem turning into a death chamber of our own creation. Even with the intention to host life at the museum: Caring and killing intertwined.

Act III: Arts for Noticing: Performing Vibratory Entanglements While our first attempt to host larvae in the desiccator-environment in the museum failed, we decided to try again to see if we could build a more hospitable environment that could engage the public with the metabolic wizardry of these worms. This, however, was not without difficulties but after breaking various tools struggling to cut through the seal and open the desiccator, Amalie finally managed to get it opened. She then carefully cleaned the glass and objects inside removing dead larvae, silk fibers weaved by the larvae, feces and debris, and noticing tiny holes in the plastic materials inside. Amazingly the worms had metabolized the plastic waste but unfortunately did not survive the feast. We were, however, in the process of opening The Living Room to the public. So, we set up another experiment, this time prioritizing the livelihood of the worms over their potential degradation of the plastic materials. We placed pieces of honeycomb inside the glass dome alongside the LDPE plastic materials, and reassembled it with various objects constituting a playground, analog sensors to extract data from the worms’ movements and metabolic processes, and a new population of worms. This time, we also added the mesh of food and habitat they arrived in into the bottom of the glass dome (which later turned out to be a caring mistake). Finally, Amalie glued the lid together and sealed the container (we are at a museum remember), this time knowing that we would no longer be able to open the desiccator without breaking it completely.

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After sealing the desiccator-environment once more, we were left with the problem of how to become more attentive to the worms and respond to their metabolic capabilities. Like Alice’s imagination of the glass softening allowing her to pass through, we needed other ways to pass through the sealed desiccator and into the lives of the worms. Eduardo had been working on ways for the metabolic processes and movements of the worms to pass through the glass barrier developing an art for noticing through sonification. Inside the desiccator, he had installed an array of sensors sensitive to environmental factors such as humidity, temperature, and vibration. The data outputs from these analog sensors were routed via an Arduino controller to trigger different sonic variables in his Digital Audio Workstation manipulating and composing a real-time soundscape inviting ourselves and visitors to auditively experience the metabolic processes of the larvae (Abrantes, 2021b). However, similar to Alice’s pretension, sonification does not yield us the “real” sounds, but rather invites us into the imaginary: a soundscape for hearing the inaudible. Unlike microphones, sonification is a process of accessing phenomena unavailable to direct aural perception seeking a discreet world of sound (Abrantes, 2021b). Sound, then, becomes a method to investigate things not yet known— granting us a chimeric sensing of the inaudible metabolic processes and movements of the wax worms (Helmreich, 2015, p. xi & 173–74). Or as Eduardo explains “one might think of sonification essentially as a kind of displacement, a bridging between phenomena and ear, a process dedicated to in-betweenness, intrinsically relational” (Abrantes, 2021b). Sonification allows us to pay attention to the artificial ecosystem we have setup inside the desiccator through an unfaithful yet curious mode of listening (Abrantes, 2021b). A mode of listening that Eduardo paired with a performance-lecture to unfold embodied connections and relationships between wax worms, objects and ourselves: We invite you to lie down and crawl with them. To imagine your every movement as involving your whole body, flexing and slowly pulsating, squirming forward. You come close to and mesh with foreign bodies and with foreign objects—the warmth of flesh wrapped in clothes, the warm hardness of wood, the flexibility of plastic, the cool hardness of metal and glass, the stickiness of your fingers and mouth, exploring, sensing—learning the environment around you. (Abrantes, 2021a).

The official opening of The Living Room in November 2021 and we are roughly 70 people attending Eduardo’s performance-lecture in a dim room only lit by flickering lights on the floor. While the desiccator-environment with worms takes a central position on a table, we are wiggling and moving slowly on our backs to the sonified sounds of wax worms inside our tiny artificial ecosystem. As we lie there on the wooden floor, we imaginatively embody the movements of wax worms as they squirm around foreign objects: laboratory waste, discarded medical equipment, analog sensors. Although our movements are slow—much slower than the wax worms’—and our sense organs different, we try to pay attention to our movements enacting what it might be like to be a worm. The performance-lecture develops as a meditation into the lives of larvae eating, digesting and in the process pupating and transforming into moths. A speculative alien phenomenology that draws partly on

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spoken word and partly on sonified sounds as a material plane for our encounter with these worms at the limits of our experiences (Bogost, 2012, pp. 31–34). A paradoxical engagement at once attentive and distanced relying on unfaithful modes of listening and mimicking their movements in all too human forms. These speculative enactments intimately stich together our bodies—both the visitors wiggling in communion and the more-than-human worms in an intermediate zone. As Clifford has argued, the museum can be understood as a contact zone invoking the spatial and temporal copresence of subjects previously separated geographically and historically (Clifford, 1997, p. 204). While Clifford developed this notion from Pratt’s original formulations to question the power relations in colonial encounters, I have recently suggested that in a posthuman era, perhaps the museum could also be understood as a contact zone not just for cultural differences but also biological differences—indeed a contact zone with the more-than-human (Grünfeld, 2021). Could we likewise tinker with the power relations between organisms and ourselves by intentionally bringing worms into the museum? As we wiggle there on the floor listening, enacting, noticing, perhaps our strong sense of a substantial and well-constituted subjectivity for a moment unsettles as we mimic their movements. This attunement, however constantly challenged by self-reflective contemplations: We know that we are not worms and it does feel rather silly laying there. Yet it also feels like we become attentive to a different experiential mode and the distance between the worms encapsulated in the sealed glass dome and ourselves becomes smaller. As we become vibratory entangled, the distance between ourselves and others shrink potentially breaking down (Trower, 2008, p. 133). In contrast to the modes of engagement discussed in the previous sections, our listening and enacting become a multi-dimensional careful attention to the mode of being of the worms.

Epilogue: And Then They Died Again. . . Of Mastery, Mould and More to Come In this essay, I have explored the complex choreography of caring for wax worms and how our modes of careful engagements are shaped and troubled by the different objects of care involved within the different contexts discussed (the home, the museum, the performance). Although, my essay follows a neat chronology and focus on an allegedly simple central object of care—the wax worm—it, nonetheless, draws us into an unstable worm(w)hole of tensions and dilemmas unfolding over time. Even in the relatively simple context of my own home, where I acted as a host and caregiver for the worms (Act I), my modes of engagement transition from a concerned provider for the worms simultaneously concerned with the risk of pest infestation to a gradual detachment corresponding to their metamorphosis into moths and potential environmental pests. My ambivalence remains unsettled between a

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responsible host, and a responsible tenant and member of a local environmental community. Yet, when we move the worms into the museum space, my ambivalence is substituted for tensions and paradoxes (Act II). Within the antibiotic museum, two central objects of care collide: the wax worms and the valued artifacts resting in stable states in the collections. The antibiotic museum is an institution that aims to maintain collections over time by suppressing temporal agents of destruction, especially pests. As time passes it becomes clear that while we are unsettling what it means to care at the museum, the risk management of the museum site is almost incompatible with caring for the worms as they die before our eyes. However, the museum is not just a place for dead things but also a place to engage the public through exhibitions and events. A potential contact zone for encounters with not just cultural and historical differences but also biological. When we setup a new experiment and listen in on the inaudible metabolic processes of the wax worms isolated in the desiccator-environment, we perhaps begin to move beyond our ambivalences and the tensions created by institutional paradoxes (Act III). Through attentive listening and an enactive performance, we attune to the modes of being of the worms. Within this mode of careful attention, the worms resurrect beyond the tension between institution and habitat as we engage with them through an art for noticing. While this momentary mode of engagement places the worms in the center of our attention, over time, however, the ambivalences, tensions and uncertainties arise again. . . Roughly 3 months after their introduction, the new population of larvae die. We have been working from home since mid-December because of yet another Covidshutdown and last time we saw the worms many of them had spun silk pupae sticking directly to the glass in the process of metamorphosis. Now they are gone. Instead of swirling moths we encounter a decomposing ecosystem. Particularly the mesh of food and habitat we placed in the bottom of the desiccator have turned into a blackish mold that no longer sustains our population of wax worms. Ironically our careful attempt to provide for the worms and sustain their lifecycles turned into its opposite as a toxic environment and once again the glass dome becomes a death chamber. Sealed and fragile the desiccator-environment marks our inabilities to control even such a small isolated space. As we gaze in from the outside without the possibilities of intervening, we find comfort knowing that what appears as a death chamber is also turning into a compost of rot and microorganisms. As Marder points out, “rotting both makes possible and invariably succeeds growth. Finitude is the ever-present shadow and source of nourishment for existence” (Marder, 2016, p. 123). We find a weird comfort in the way fungi stich worlds together as regenerators and recyclers (Sheldrake, 2020, p. 20). From a planetary perspective the emerging processes of rot and decay inside the desiccator-environment was a gift of life. Finally, on a random Friday morning, Eduardo and I first notice grayish brownish debris on the wooden pedestal on which the desiccator is resting. Later in the day, Amalie takes a look and her concern begins to grow as she notices tiny mites inside the desiccator—tiny enough to breach the small metal grid she attached to the side to secure a steady flow of oxygen to the worms. To secure the museum site, Amalie decides to clean the debris and sterilize the pedestal (even the floor where it

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stood). Yet the debris returns outside the desiccator a few days later and turns out to be anything but static leftovers of other organisms: When we zoom in on the debris with a microscope, the debris is teeming with living tiny mites (presumably Lepidoglyphus destructor, which was identifyed by Caitlin DeSilvey and her husband during her visit to The Living Room) breaching the crucial boundary between the ecosystem and the museum building. As we envelop the unstable desiccator-environment in two large plastic bags, our attempts at a posthuman practice of care are once again unsettled and troubled by dilemmas and ambivalences: what does it mean to engage carefully? The now enveloped glass dome turns into an ironic monument of our own shortcomings navigating the dilemmas of a posthuman practice of care at the museum. A bigger picture grows out as new lifeforms emerge within (and around!) their enclosed habitat. A bigger picture or worm(w)hole that reveals a collective caring on a planetary scale bringing a sense of hope for life. Apart from our attempts at mastery, is there after all still hope for life at the museum and beyond, despite our antibiotic habitation on this planet?

References Abrantes, E. (2021a). Worm-whole: Lecture-performance script. Unpublished. Copenhagen. Abrantes, E. (2021b, March 26). Sonification, or, listening in wonder of the most discreet. Retrieved from https://www.museion.ku.dk/2021/03/sonification-or-listening-in-wonder-of-the-mostdiscreet/ Andrea, A., Krogfelt, K., & Jenssen, H. (2019). Methods and challenges of using the greater wax moth (Galleria Mellonella) as a model organism in antimicrobial compound discovery. Microorganisms, 7(3), 85. Beiner, G., & Ogilvie, T. M. A. (2005). Thermal methods of Pest eradication: Their effect on museum objects. The Conservator, 29(1), 5–18. Bogost, I. (2012). Alien phenomenology, or, what it’s like to be a thing. University of Minnesota Press. Bombelli, P., Howe, C. J., & Bertocchini, F. (2017). Polyethylene bio-degradation by caterpillars of the wax moth Galleria Mellonella. Current Biology, 27(8), R292–R293. Campbell, B. A. & Baars, C. (Eds.). (2019). The curation and care of museum collections: Reinventing self and nation. Routledge. Cassone, B. J., Grove, H. C., Kurchaba, N., Geronimo, P., & LeMoine, C. M. R. (2022). Fat on plastic: Metabolic consequences of an LDPE diet in the fat body of the greater wax moth larvae (Galleria Mellonella). Journal of Hazardous Materials, 425, 127862. Clifford, J. (1997). Routes: Travel, and translation in the late twentieth century. Harvard University Press. Deliss, C. (2020). The metabolic museum. Hatje Cantz. DeSilvey, C. (2017). Curated decay. University of Minnesota Press. Florian, M.-L. (1997). Heritage eaters. James & James (Science Publishers). Goñi, A. (2017). A CSIC scientist discovers that wax worms eat plastic. EurekAlert/AAAS. 2017. Grünfeld, M. (2021). Thinking and/over/in the pandemic. In S. Newman & T. Topuzovski (Eds.), The Posthuman pandemic (1st ed., pp. 201–218). Bloomsbury Academic. Grünfeld, M. (2022). Culturing impermanence at the museum: The metabolic collection. In H. Geismar, T. Otto, & C. Warner (Eds.), Impermanence: Exploring continuous change across cultures. UCL Press.

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Haraway, D. (2008). When species meet. University of Minnesota Press. Helmreich, S. (2015). Sounding the limits of life: Essays in the anthropology of biology and beyond. Princeton University Press. Kaku, M. (2021). Blackholes, wormholes and the tenth dimension. MK (blog). 2021. https://mkaku. org/home/articles/blackholes-wormholes-and-the-tenth-dimension/ Law, J. (2010). Care and killing: Tensions in veterinary practice. In A. Mol, I. Moser, & J. Pols (Eds.), Care in practice (pp. 57–72). transcript Verlag. Lorimer, J. (2020). The probiotic planet: Using life to manage life. University of Minnesota Press. Marder, M. (2016). Grafts: Writings on plants. University of Minnesota Press. Mol, A., Moser, I., & Pols, J. (2010). Care: Putting practice into theory. In A. Mol, I. Moser, & J. Pols (Eds.), Care in practice (pp. 7–26). transcript Verlag. Morgan, J., & Macdonald, S. (2018). De-growing museum collections for new heritage futures. International Journal of Heritage Studies, 15(1), 1–15. Murphy, M. (2015). Unsettling care: Troubling transnational itineraries of care in feminist health practices. Social Studies of Science, 45(5), 717–737. Pearce, S. M. (1999). On collecting. Routledge. Perkowitz, S. (2010). Encyclopedia Britannica. Wormhole. https://www.britannica.com/science/ wormhole Puig de la Bellacasa, M. (2017). Matters of care. University of Minnesota Press. Puig de la Bellacasa, M. (2021). Embracing breakdown: Soil ecopoetics and the ambivalences of remediation. In D. Papadopoulos, M. Puig de la Bellacasa, & N. Myers (Eds.), Reactivating elements: Chemistry, ecology, practice (pp. 196–230). Duke University Press. Sanluis-Verdes, A., Colomer-Vidal, P., Rodriguez-Ventura, M., Bello-Villarino, M., SpinolaAmilibia, E., Ruiz-Lopez, R., Illanes-Vicioso, et al. (2022). Wax worm saliva and the enzymes therein are the key to polyethylene degradation by Galleria Mellonella. Nature Communications, 13(1), 5568. Sheldrake, M. (2020). Entangled life: How fungi make our worlds, change our minds and shape our futures. The Bodley Head. Trower, S. (2008). Editorial: Vibratory movements. The Senses and Society, 3(2), 133–135. Wojda, I., Staniec, B., Sułek, M., & Kordaczuk, J. (2020). The greater wax moth Galleria Mellonella: Biology and use in immune studies. Pathogens and Disease, 78(9). Zuiderent-Jerak, T., & Jensen, C. B. (2007). Editorial introduction: Unpacking “intervention” in science and technology studies. Science as Culture, 16(3), 227–235.

Martin Grünfeld is assistant professor in science communication at the Department of Science Education at the University of Copenhagen. He is an interdisciplinary scholar working at the intersections between art-based research, cultural studies, museology, philosophy and science communication, who has published widely on topics ranging from academic writing practices to cultivating life processes at the museum. Currently, he is working on developing the notion of ecopoetics in theory and practice, and developing new experimental curatorial formats aimed at tackling issues around sustainability, climate change and post-truth. His recent research has been focused on museum ecologies with an emphasis on questions about disposal, value, heritage eaters and decay in relation to ways of caring beyond saving collaborating among others with Caitlin DeSilvey. This research was embodied in the experimental research exhibition The Living Room (https://www.museion.ku.dk/en/the-living-room_/) hosted at Medical Museion in Copenhagen between 2021 and 2023 generously funded by the Novo Nordisk Foundation Center for Basic Metabolic Research.

Chapter 11

Careful STS Interventions in Transdisciplinary Environmental Research Catharina Landström

Introduction Doing STS (science and technology studies) in projects with collaborators from other disciplines raises a range of questions. Reflections on the topic have put the emphasis on critique, for example of institutional attempts to integrate STS scholars in biomedicine to guard against societal controversy rather than create knowledge (Marks & Russell, 2015). This chapter approaches the issue from a different research practice—transdisciplinary environmental research, which brings other issues into the foreground. Inspired by Ana Viseu’s (2015) use of personal experience of doing STS research in a non-STS setting this chapter takes the author's recollections as the starting point for reflection. Working in a nano technology project Viseu experienced a division of labour that assigned the responsibility of caring for the social relationships to the social scientist, in contrast my experience is of being regarded an equal member of the research team. This difference supports Viseu’s argument that it is important to examine how we do STS embedded in other research and reflect on what it means for ‘STS’s methods, identity, sustainability, and research sites’ (Viseu, 2015, p. 644). While inspired by Viseu’s use of personal experience my reflections differ in that they do not focus on one project, instead I draw on personal recollections of doing STS in several transdisciplinary projects on water in the UK since 2007. In these projects I have been a researcher, team leader and co-investigator working with natural and social scientists in collaboration with local people to address water related problems. The projects have varied in size and duration, with research teams ranging from four academics to around 50, lasting from one to five years. The topics have been water problems affecting local communities—flooding, C. Landström (✉) Chalmers University of Technology, Gothenburg, Sweden e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_11

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drought, and poor water quality. In some of the projects the scientists have been critical of established water science and management and used transdisciplinary research as a way to do things differently (Landström, 2017). The reflections offered in this chapter are illustrated with personal recollections of particular moments in some of these projects. Founded in personal recollection the level of detail, as well as the empirical exactitude, of the examples is limited. It is very likely that other people involved with these projects would remember other things, remember the same things differently and take away different lessons. Hence, the accounts provided are not to be read as empirical evidence but as reconstructions of what, with hindsight, turned out to be significant experiences. The reflections pivot on the idea of careful engagements and draw on notions elaborated in STS. The chapter begins with clarifying transdisciplinary environmental research deploying the notions ‘matters of concern’ and ‘matters of care’ to characterize this way of working. Thereafter the relationships between the STS researcher and project collaborators—natural scientists and local people, come into focus. The following section offers reflection on what a ‘matter of care’ that motivates STS involvement with this kind of research could amount to. After this the gaze turns to STS interventions in a discussion drawing on the notions of ‘situated interventions’ and ‘artful contamination’, to reflect on affecting research and society. ‘Careful tinkering’ is then used to address the responsibility of the STS researcher for the impact of transdisciplinary research on society. Some concluding remarks consider the duty of care associated with doing STS that impacts on science and society and the possibility of addressing it with perspectives on care.

Transdisciplinary Environmental Research Transdisciplinarity as a way of working in environmental science originates in a commitment to contribute to making sociotechnical change environmentally sustainable (Hirsch Hadorn et al., 2006). Discussion about what defines transdisciplinary environmental research has arrived at the involvement of lay people in the scientific knowledge production as a key feature that distinguishes it from multiand interdisciplinarity which bring different academics together. The interest among environmental scientists to involve non-scientists in the research links to their ambitions to improve environmental management and governance (Culwick & Patel, 2017). The invitation to STS scholars to join transdisciplinary environmental projects ties in with a recognition by research funding agencies of the need for social science knowledge about science in society to promote social impacts effectively (e.g., NERC (Natural Environment Research Council) in the UK or The Horizon programme in the EU). Natural scientists who want to create knowledge that contributes to environmental sustainability sometimes ask specifically for STS expertise as it has become clear that it is necessary to understand relevant aspects of the science-society relationship. That scientists in transdisciplinary projects want

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to involve affected communities resonates with STS notions such as ‘co-production’ (Jasanoff, 2004), ‘mode 2’ (Gibbons et al., 1994) and ‘post normal science’ (Funtowicz & Ravetz, 2018). Arguably the environmental sciences were set up to care, the mission was to develop scientific knowledge that would help to take better care of nature. To understand what this might entail Maria Puig de la Bellacasa’s concept ‘matters of care’ as ‘a proposition to think with’ is useful (2011, p. 100). Puig de la Bellacasa develops the notion with reference to Bruno Latour’s concept ‘matters of concern’ that has prompted STS scholars to approach what is considered scientific facts not as solid statements about true reality but as complex processes (Latour, 2004). Matters of concern has been a key concept in the transdisciplinary water projects that provide the empirical substrate for this chapter. In practice this has meant that we have started our research with identifying what the local participants considered to be unsettled claims about the nature of a problem, e.g., uncertainties and lack of knowledge troubling local water management. The concept contributes to clarification of the mismatch between established scientific knowledge and the experience in local communities of institutional failure to solve problems. It also helps with engaging university scientists with local conditions and to think differently about how to investigate problems with water. Focussing on local matters of concern highlights the uncertainty of scientific knowledge and the inevitability of conjecture in science-based water management, thereby opening for renewed research and new management strategies. However, the notion does not capture the affective dimensions sufficiently to understand how the new knowledge could prompt change, thus, I turn to the concept matters of care. Puig de la Bellacasa explains that she was attracted to Latour’s concpet because of ‘the capacity of the word “concern” to move the notion of “interest” toward more affectively charged connotations, notably those of trouble, worry and care’ (2011, p. 89). Such an affective charge is often present in transdisciplinary water research. We have found that anger about the inability of local government and expert authorities to solve water problems affecting everyday life can motivate people to participate in research projects. Importantly it is not just their own vulnerability that arouse affect but also the perceived neglect of water bodies and their ecology. For example, flooding does not only impact on buildings, but it also damages the riverbanks that provide habitat for animals and plants; water abstraction exacerbates the drying out of wetlands that sustain birds and amphibians and water pollution is detrimental to aquatic life in general. We have learned that people care, there is a ‘strong sense of attachment and commitment to something’ (Puig de la Bellacasa, 2011, pp. 89–90) that motivates them to spend time and effort to participate in our projects. Transdisciplinary environmental science involves ‘an affective state, a material vital doing, and an ethico-political obligation’ (Puig de la Bellacasa, 2011, p. 90). In many academic publications, both in natural and social sciences, this affective state and the ethico-political commitment are not recognised, the research is reported as if it was driven by scientific curiosity alone. This obscures the actual drivers for doing research in this way. Without commitment to improve local environments it is not

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possible to get local people involved. Creating scientific knowledge as such is of interest mainly to scientists, for other people to spend time on research the pursuit of knowledge must bring local benefits, not just to individuals, or even only to humans. Transdisciplinary environmental research must care about local environments. To understand transdisciplinary environmental research as caring we must also consider local power relations. Transdisciplinary research challenges the matters of fact established in local environmental management (Lane et al., 2011), but scientific challenge is not enough to change local environmental management. It is as common for the outputs of transdisciplinary projects to end up in scientific reports archived on a shelf in a back office, as it is for disciplinary scientific projects. For the knowledge co-created in transdisciplinary projects to make a difference in the world somebody must care enough to bring it to the people and places where decisions are made (Whatmore & Landström, 2011). This is slow and thankless work that requires an affective commitment that only the local participants can bring to transdisciplinary environmental research.

Concern and Care for Water The projects with which I have worked were designed to improve local water management. For this to be possible the scientific aims must be integrated with local matters of concern and care. To understand how this can be done a local case study of flooding in a rural area is illustrative. The collaboration with the local participants started with formulating research questions and designing a research plan that would generate new knowledge that could inform flood mitigation measures. In this locality responsible authorities had failed to solve the problem of recurrent river flooding. An unfortunate combination of natural processes with dated scientific knowledge and financial constraints had left the town without flood protection, despite several flooding events in less than a decade. Many people had been flooded out of their homes and residents not directly threatened were still affected as floods damaged the town as a place to live. The situation had escalated to open conflict with the authorities. The protective measures once proposed had been impossible to implement due to financial constraints and uncertainty about their effects. The knowledge controversy about the effectiveness of interventions was a matter of local concern that could unite with scientific research interests. A shared sense of purpose quickly grew from articulating local flood risk management and established flood risk science as matters of concern. As the collaborative research commenced the affective dimension of the research became visible. The participating residents did not only care about protecting people and properties from flooding, they also cared about the river and the non-humans depending on it, as well as the town as a place. People had a relationship with the river and the ecosystems relying on it, that included, for example, making sure that the water could flow unhindered by clearing debris that could be hazardous to humans and animals. In addition, farmers controlled the impact of their animals on

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the embankments. It also meant guaranteeing that people could access the river as a green space in the middle of town and to ensure that flood mitigation measures would not impact negatively on the river as environmental system and amenity. In the conversations that made caring visible we also learned that the natural scientists cared about the river. For them it was important to investigate robust and cost-effective flood mitigation measures that would not impact negatively on the river and its ecosystem. To be feasible, in the eyes of the scientists, interventions had to be possible for local volunteers to manage and maintain, at reasonable cost. The scientists had a vision of decentralised flood risk management led by the affected community. As a shared matter of care took shape in the project the STS researchers’ interest in processes of empowerment of local people in relation to technoscientific experts turned out to be less interesting to talk about. At the time we felt somewhat marginalised but with hindsight the coming together of scientists and local people in the way that happened in this project turned local empowerment through science into practice. As social scientists all we needed to do was to stand back and observe.

STS and Caring Collaborators Successful co-creation of matters of care in transdisciplinary environmental project prompts STS questions about how to relate to local participants bringing their interests into the research. This is an intrinsic aspect of doing participatory research since local people are motivated to participate by matters of care and that means having an interest in effectuating change. Howard and Irani (2019) discuss how research subjects caring for an issue craft their participation in research, finding that ‘a subject’s willingness to participate in a study might express wider social projects and even serve as an activist method to create platforms for discussion. People come to find meaning in research by engaging with it to benefit their communities even if they don’t necessarily directly benefit themselves’ (Howard & Irani, 2019, p. 7). Transdisciplinary research based on collaborative identification of matters of care is inevitably guided by the interests of local participants which poses a particular challenge for STS researchers. The challenge associated with STS becoming aligned with the interests of others is a long-running topic of debate. In the early 1990s Scott et al. (1990) argued that giving equal attention to the minority position in scientific controversies by necessity provided support for it. Harry Collins (1991) responded, insisting that neutrality as a methodological principle was both possible and necessary. Martin et al. (1991) persisted and claimed that for research to be critical it is necessary to side with the disempowered. Whether granting space to rejected knowledge claims amounts to advocacy has resurfaced as a contentious issue in STS several times, for example in relation to controversies about climate modelling where neutrality regarding climate change denialism has been seen as a problem. Recently the issue has re-ignited in relation to the notion of ‘post-truth’ (Lynch, 2017).

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The juxtaposition of discussions of care, centred on the relationships with the members of the public that participates in research and the STS debate, focusing on knowledge controversies, highlights the dilemma of doing STS in transdisciplinary environmental research. The STS researcher involved with such projects does not start from the outsider position that makes the idea of a neutral observer possible but is part of a team with an agenda that includes scientific and societal change. When deciding to participate in a transdisciplinary environmental project the STS researcher commits to the objectives engaging the other scientists and the local people. Local people participate in transdisciplinary environmental projects to impact on local environmental management, natural scientists critique the knowledge used in environmental management. The STS researcher who is not necessarily committed to either of these ambitions becomes aligned with them by taking part in the project. Approximating the argument of Scott et al. (1990) I believe that joining a transdisciplinary environmental project requires sharing a commitment with the other collaborators. Recognising the affective dimension as necessary to motivate local involvement with science, however, points the discussion away from the risk posed to the neutrality of the STS researcher and towards the responsibilities associated with doing research that will impact on the world.

Organised Publics Caring for Water In the UK blue water1 is an important issue for environmental non-profit organisations such as Rivers Trusts and volunteer organisations that engage with the condition of local rivers. Rivers Trusts have the mission to connect people with water, often in hands-on activities ranging from litter-picking in urban rivers to constructing natural flood mitigation measures upstream in rural catchments. Many local groups are also interested in governance issues, such as ensuring that local planners consider rivers when issuing permits for new developments. Groups also engage with legal and regulatory issues, for example advocacy for making water quality a mandatory consideration when planning new transport routes. Members of such groups engage with scientific research for reasons beyond knowledge production, they also want specific changes to local water management. According to Howard and Irani members of such groups can regard science as a means to achieve their own goals since ‘Researchers, with their powers to anonymize and take the heat for research findings, can often make contact and circulate stories people otherwise would not share widely’ (2019, p. 7). For an STS scholar committed to a neutral stance the influence on the research by organised local publics would make it impossible to take part in transdisciplinary environmental projects.

Blue water is water flowing freely in the environment, e.g., rivers and lakes, in contrast to green water which is bound in soil and vegetation.

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To overcome objections against supporting the interests of local environmental groups the STS researcher needs to remember that applied environmental research is always guided by somebody’s interests, mostly institutions and/or corporations. The influence of government and businesses on water research has, among other things, resulted in scientific knowledge about water that address topics and geographical scales remote from the matters of concern and care of local people. Asking what local communities, including organised environmental groups, want more knowledge about and would need scientific knowledge for, can in this context, be understood as a way for researchers to re-balance the production and use of science in society. However, when we as researchers contribute to the creation of knowledge for use by an organised public we promote one way of caring for a water environment and people that is premised on the particular interests of that group. It is important to acknowledge that transdisciplinary environmental research is not socially neutral. While a mission of caring for rivers is most certainly laudable there is no guarantee that the particular way of caring advanced by one environmental group is the best way to achieve overall societal objectives of e.g., environmental sustainability. The STS scholar must be clear about the situatedness and partial perspective of transdisciplinary environmental research which differ from those of research in other settings such as laboratories.

Caring to Do Transdisciplinary Environmental Research Overcoming the STS resistance to taking sides in knowledge controversies to work in transdisciplinary environmental projects is only one step. The STS researcher also needs a matter of care that can propel their search for new knowledge in collaboration with natural scientists and local people. While the natural scientists in a transdisciplinary project often care as much as the local people about the state of the environment it can be more complicated for the STS researcher to identify a matter of care that motivates involvement with a local environmental problem. Although STS scholars may be committed to environmental sustainability it is not a core theme in their academic field and they will not share the matters of care that drive the natural scientists and the local participants in transdisciplinary environmental projects. However, Puig de la Bellacasa notes that ‘Potentially, matters of care can be found in every context; exhibiting them is valuable especially when caring seems to be out of place, superfluous or simply absent’ (2011, p. 93). The challenge is to find something in the transdisciplinary research that constitutes a matter of care for STS. In my work there is one theme that runs through several projects as the STS matter of care—an ambition to make scientific knowledge usable and useful for local environmental groups. This is a version of democratisation of science and over time it has brought me to the issue of digital tools. Computer models are digital tools widely used in water science and management. I came to this topic in the project on rural flooding mentioned above where the

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natural scientists and the local participants created a new computer model together that made it possible to explore alternative flood mitigation measures (Landström et al., 2011). Following this process from the start I learned that scientists create computer models as tools to think with. They express their understanding of the mechanisms driving processes such as flooding and drought, in computer code. The computer programmes perform calculations that allow the researchers to test their understanding of the processes on extensive data sets. This is very different from using computer models to justify flood management policies and to tell people that there are no alternatives which the local participants in the project had experience of. Before our project local people had encountered computer modelling in flood risk management as an impenetrable barrier to their experience-based knowledge. In contrast we used models to integrate their knowledge with scientific approaches, to try out new ideas and other possibilities for flood risk management (Landström et al., 2019). Making scientific computer models work as tools to think with in collaborative water management, where local publics and authorities can work together, is a matter of care that provides motivation for me to continue to get involved with transdisciplinary water projects.

STS Interventions in Science The ambition to make model-based water science useful to local publics can warrant STS intervention in a project to change shared agendas. A project in London aiming to promote integrated water management2 is illustrative. One STS-led sub-project worked with local participation and the capacity of local community groups to engage with science and use scientific knowledge. The first thing we learned was that the most pressing local matter of concern was poor water quality. Water quality had not been considered in the development of the overall project and it was not an area of expertise among the natural scientists. However, given our collective ambition to make science relevant for local people to encourage their involvement with water management the need for the project to address water quality was obvious. Resources were reallocated and a specialist in water quality was brought in to do participatory modelling of the potential of constructed wetlands as a measure addressing the problem. Water quality turned out to be a salient issue among all types of stakeholders and other, natural science, sub-projects adopted it as a matter of care. To understand what happened in the urban water management project ZuiderentJerak’s (2010) discussion of interventionist practices as situated is helpful. He

2 Integrated Water Management (IWM) in urban settings in European countries involves decentralisation of decision-making and joined up approaches to aspects of the water system traditionally kept separate, such as flooding and water quality, drought, and sewage treatment (Ferguson et al., 2013).

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proposes ‘a different pathway for locating normativities; that is, not situating them in predefined social problems (that then might need to be complexified), but rather locating them in the complexities of the practice that the STS researcher is trying to act with’ (Zuiderent-Jerak, 2010, p. 684). Zuiderent-Jerak’s notion of situated intervention is a way to manage the reluctance of STS to express preferences for one course of action over another ‘that avoids reducing the space to explore and complexify multiple normativities’ (2010, p. 684). Situated intervention can aid the STS researcher in understanding their own influence on the production of knowledge in transdisciplinary environmental projects. The STS intervention in the urban water management project can be understood as a situated intervention in the context of criticism of science that is aligned with institutional and corporate values (Wynne, 2006; Jasanoff, 2003). In modern western societies water management is considered a technical task, delegated to professionals with science-based expertise. In these circumstances directing scientific research towards the interests of local publics can be viewed as counter-balancing technocratic tendencies. In the example the project would have focused on issues relevant to the water utility industry and local authorities without our intervention. It is the responsibility of the STS researcher in a transdisciplinary project to ensure that the societal context of the science is thoroughly examined.

Artful Contamination of STS It is not only the impact of STS interventions on transdisciplinary environmental projects that needs to be considered but also the effects on STS of intervening. Every situated intervention blurs established delineations and can be seen as an ‘artful contamination’, to use another of Zuiderent-Jerak’s (2010) notions. He argues that ‘a relation of contamination means that both STS insights and (health care) practices under study become entangled, and that changes in the domain and normativity of these practices change the identity and normativity of the domain of STS and vice versa’ (Zuiderent-Jerak, 2010, p. 701). The concept captures ‘a productive interplay in which STS scholars are influenced by the practices they act with, without losing the “anti-bodies” they keep building up by being part of other practices, be those STS conferences, debates with activists or discussions in their research groups’ (Zuiderent-Jerak, 2010, pp. 701–702). An illustration of what could amount to artful contamination in transdisciplinary water research is the presentation of the outcomes of the project on rural flooding, mentioned previously, to the wider community and local decision-makers. The findings and recommendations arrived at in our investigation were presented at an event in the town hall. At this event scientists (including the STS researcher) and local participants explained the new computer model and argued for the potential of

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natural flood management3 measures to improve the situation. At the time, this was a novel approach to flood mitigation but the low cost and the low risk made it worth trying and modelling results were encouraging. This was what we had arrived at by integrating scientific knowledge, adhering to established epistemic quality criteria, with local matters of care articulated by a group of residents that we had worked with for a year. For the STS researcher the contamination associated with choosing sides required an artful balancing of the politics of the situation, which in this case was about taking the risk to propose a specific type of flood mitigation. As an STS researcher my understanding of flood mitigation is limited, but I still sided with the transdisciplinary team in arguing for a particular approach.

Caring for Interventions Intervening in local environmental management via transdisciplinary research is not easy or straightforward. Puig de la Bellacasa (2011) discusses the risk of inventions turning into monsters and explains that ‘it is not a technology that is unethical if it fails and becomes a monster, but rather to stop caring about it, to abandon it as Dr. Frankenstein abandoned his creation.’ (2011, p. 90). Caring for the inventions resulting from transdisciplinary research is important for the STS researcher. Very often the knowledge created in transdisciplinary projects is not possible to use after the end of the project, just like in traditional scientific projects the outputs end up on a shelf in a back office (McLellan, 2021). This may not look much like the horror unleashed by Frankenstein, but it is detrimental for the trust in science among local publics. Every time local people take part in a collaboration with scientists that does not leave them with anything useful their trust and interest in science diminishes. For the STS researcher the continued useability and maintenance of the output of transdisciplinary research is also a matter of care. It includes ensuring that the group participating in the project is not the only local public that can use the knowledge created. To make the tools and techniques developed more widely usable was an important aim of the integrated urban water management project. One aspect of this was to make the computer modelling more intelligible. Water scientists routinely create new modelling tools for professional users in water management. In this project we wanted to make computer modelling tools that addressed questions relevant to local communities (as discussed above) and that could also be used by local environmental groups after the end of the project. We thought that if scientists and water management actors use models to analyse, represent and explain local water problems it is important to make modelling comprehensible to affected publics. We

Natural Flood Management (NFM) is today an established approach to mitigate against flooding by creating structures that retain excess water upstream in rural catchments instead of building walls beside rivers in more densely populated areas (Lane, 2017).

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quickly learned that making scientific models understandable for the non-expert (including the STS researchers) is very challenging. The scientific model used to explore the impact of constructed wetlands on water quality turned out to be very complicated to use and the scientist who had created it did not want to customize it in the way needed. We had to revise the plan and instead of making the model useable we created a completely new digital tool that made it possible to explore the modelling results We (the STS researchers) pushed the scientists (and a couple of software engineers whose time could be made available) to create a new visual interface that displayed modelling outputs in a way that was intelligible for the environmental group we collaborated with and that they could use. To enable wider use of the visual interface after project completion we invited other local groups to presentations and involved a national umbrella organisation for rivers trusts to ensure wide communication about the new tool. This illustrates what taking care of the new knowledge co-produced in a transdisciplinary water project could mean in practice.

Careful STS Tinkering Driving the development of a new type of tool to make science useable by local people is very different from the STS interventions in health care discussed by Zuiderent-Jerak (2010) who was in a position where a digital technology already existed. In contrast we convinced the natural scientists to create different tools that did other things than they had originally planned. This is similar to the process analysed by Nicola Marks and Wendy Russell who talk about ‘careful tinkering by organisers of public engagement who aim to create spaces for a range of actors (including often-marginalised ones) to move beyond clashes over matters of fact and towards assembling matters of concern’ (2015, p. 102). In terms of creating space our challenge was metaphorical, we needed to make the intellectual space in which computer simulation modelling could accommodate non-expert users. Ensuring public usability of the outputs from the transdisciplinary research project was a matter of care for the STS scholars in the urban water management project. It was not enough to satisfy the intellectual curiosity of the natural scientists and the local participants’ need for actionable knowledge, but the outcomes needed to be made available to others, in formats that were usable. An attitude of careful tinkering was key to this STS intervention and it amounted to prompting the co-creation of a user interface that turned the scientific model into a tool for local environmental groups to deliberate on their matters of care together with residents and local decision-makers. It was not a radically dissimilar task from what the scientific modellers were used to but the tools had a different intended role in society. It was careful in the sense of recognising what scientists and the local group valued and considered important. The careful STS tinkering drew attention to the previously unquestioned expectations of the natural scientists that lay participants in transdisciplinary research

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would learn to use the outputs. This turned out to be wrong. However, the natural scientists were aware of having a limited understanding of how science impacts different social settings, that is why they wanted to work with STS researchers in the first place. That is also why they were open to doing things differently when the STS colleagues asked them to. Being an active participant in the research the STS researchers tried ‘to pull out what it might mean, in this particular instance, to assemble matters of concern, to avoid corrosive critique and to practise care’ (Marks & Russell, 2015, p. 108) thereby taking responsibility for the transdisciplinary research and its outcomes.

Concluding Remarks on the STS Duty of Care in Transdisciplinary Environmental Research It is possible to conduct STS research in transdisciplinary environmental projects aiming to change the world, but it places on the STS scholar a duty of care that requires reflection on how to navigate the specific challenges. To understand one’s role in such contexts the perspectives developed in the STS discussion of care are useful. In this chapter I have approached the issues through reflections on my own experience with careful STS engagements with transdisciplinary water research. Throughout the discussion I have reflected on my experience of doing STS in transdisciplinary environmental projects as being about care in practice, emphasising the need to understand the values of all the people involved, natural scientists and local publics. Mobilising the notions matters of concern and matters of care to capture the epistemic and the affective dimensions of doing research with others that impacts on local environmental management. Matters of concern (Latour, 2004) encourages exposure of the knowledge underpinning established environmental management that does not address local problems adequately. Matters of care (Puig de la Bellacasa, 2011) highlights the importance of affective drivers for public participation and collective research agendas. Transdisciplinary environmental research addresses issues that impact on local communities and society more broadly and it can be understood to place on the scientists (including the STS researcher) a duty of care. For the STS researcher it is necessary to give up the position of critical outsider and accept that one’s actions will impact on the other participants and the worlds they inhabit. Reflections on how this can be understood were supported with the notions of situated intervention and artful contamination (Zuiderent-Jerak, 2010). Changing research plans with the ambition to enable pursuit of local participants’ matters of care amounts to a situated intervention that challenge established normativities. Contributing to the ambitions of organised local publics to effect environmental management change, involves the artful contamination of STS.

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References Collins, H. M. (1991). Captives and victims: Comments on Scott, Richards and Martin. Science, Technology, & Human Values, 16(2), 249–250. Culwick, C., & Patel, Z. (2017). United and divided responses to complex urban issues: Insights on the value of a transdisciplinary approach to flooding risk. Area, 49, 43–51. Ferguson, B. C., Brown, R. R., Frantzeskaki, N., de Haan, F. J., & Deletic, A. (2013). The enabling institutional context for integrated water management: Lessons from Melbourne. Water Research, 47(20), 7300–7314. Funtowicz, S., & Ravetz, J. (2018). Post-normal science. In N. Castree, M. Hulme, & J. D. Proctor (Eds.), Companion to environmental studies. (pp. 443–447). Routledge. Gibbons, M., Limoges, C., Nowotny, H., Schwartzman, S., Scott, P., & Trow, M. (1994). The new production of knowledge: The dynamics of science and research in contemporary societies. Sage. Hirsch Hadorn, G., Bradley, D., Pohl, C., Rist, S., & Wiesamnn, S. (2006). Implications of transdisciplinarity for sustainability research. Ecological Economics, 60, 119–128. Howard, D., & Irani, L. (2019, May 4–9). Ways of knowing when research subjects care. In CHI Conference on Human Factors in Computing Systems Proceedings (CHI 2019). ACM. https:// doi.org/10.1145/3290605.3300327. Jasanoff, S. (Ed.). (2004). States of knowledge. Taylor & Francis. Jasanoff, S. (2003). (no?) accounting for expertise. Science and Public Policy, 30(3), 157–162. Landström, C., Becker, M., Odoni, N., & Whatmore, S. J. (2019). Community modelling: A technique for enhancing local capacity to engage with flood risk management. Environmental Science and Policy, 92, 255–261. Landström, C. (2017). Transdisciplinary environmental research: A practical approach. Palgrave Macmillan. Landström, C., Whatmore, S. J., Lane, S. N., Odoni, N. A., Ward, N., & Bradley, S. (2011). Co-producing flood risk knowledge: Redistributing expertise in ‘participatory modelling’. Environment and Planning A, 43(7), 1617–1633. Lane, S. N. (2017). Natural flood management. Wiley Interdisciplinary Reviews: Water, 4(3), e1211. Lane, S. N., Landström, C., & Whatmore, S. (2011). Imagining flood futures: Risk assessment and management in practice. Philosophical Transactions of the Royal Society A, 369, 1784–1806. Latour, B. (2004). Why has critique run out of steam? From matters of fact to matters of concern. Critical Inquiry, 30(2), 225–248. Lynch, M. (2017). STS, symmetry and post-truth. Social Studies of Science, 47(4), 593–599. McLellan, T. (2021). Impact, theory of change, and the horizons of scientific practice. Social Studies of Science, 51(1), 100–120. Marks, N. J., & Russell, A. W. (2015). Public engagement in biosciences and biotechnologies: Reflections on the role of sociology and STS. Journal of Sociology, 51(1), 97–115. Martin, B., Richards, E., & Scott, P. (1991). Who’s a captive? Who’s a victim? Response to Collin’s method talk. Science, Technology, & Human Values, 16(2), 249–250. Puig de la Bellacasa, M. (2011). Matters of care in technoscience: Assembling neglected things. Social Studies of Science, 41(1), 85–106. Scott, P., Richards, E., & Martin, B. (1990). Captives of controversy: The myth of the neutral social researcher in contemporary scientific controversies. Science, Technology, & Human Values, 15, 474–494. Viseu, A. (2015). Caring for nanotechnology? Being and integrated social scientist. Social Studies of Science, 45(5), 642–664. Whatmore, S. J., & Landström, C. (2011). Flood-apprentices: An exercise in making things public. Economy and Society, 40(4), 582–610.

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Wynne, B. (2006). Public engagement as a means of restoring public trust in science–hitting the notes, but missing the music? Public Health Genomics, 9(3), 211–220. Zuiderent-Jerak, T. (2010). Embodied interventions—Interventions on bodies: Experiments in practices of science and technology studies and hemophilia care. Science, Technology, & Human Values, 35(5), 677–710.

Catharina Landström has been Associate Professor in the Division of Science, Technology and Society (STS) at Chalmers University of Technology since 2018. Before that she worked as a Senior Researcher in the School of Geography and the Environment at University of Oxford. While spending over a decade in the UK she did research on how to engage local publics with water science and decision making. She is continuing to research this issue with colleagues in the CAMELLIA project in London (www.camelliawater.org). She has published two books and several journal papers discussing how to use scientific tools to engage local communities with different water management issues, including flood risk management and water quality. Her most recent book Environmental Participation. Practices engaging the public with science and governance (London: Palgrave MacMillan) was published in 2020.

Chapter 12

Caring for Methods: ‘Care-Ful Method Practice’ through Methodography Julie Sascia Mewes and Ingmar Lippert

Introduction Building upon recent notions of care in STS, in this chapter, we highlight the relationship between ‘care-ful research’ and ‘care-ful method practice’. For this we turn to ‘methodography’, a way of enacting care through ethnographic methods to foreground and nuance sensibilities for methods in Science and Technology Studies (STS) research. In practice, scholars in the area of care studies in STS attend to different layers of care—for example, to whom or what performing care is directed towards. However, we suggest a trend of this scholarship as predominantly attending to ‘care’ as either an empirical or theoretic-analytic concern. In the editorial of the special issue concerning The Politics of Care in Technoscience this was described as “mov[ing] back and forth between two layers of care: that which we, as STS scholars, teachers J. S. Mewes (✉) Scientific Programme Society and Nature, Museum für Naturkunde - Leibniz Institute, Berlin, Germany Centre for Anthropological Knowledge in Scientific and Technological Cultures, Ruhr University Bochum, Bochum, Germany e-mail: [email protected] I. Lippert Scientific Programme Society and Nature, Museum für Naturkunde - Leibniz Institute, Berlin, Germany Institute of Cultural Anthropology and European Ethnology, Goethe University Frankfurt, Frankfurt, Germany Chair of Technoscience Studies, Brandenburg University of Technology, Cottbus, Germany Technologies in Practice Research Group, IT University of Copenhagen, Copenhagen, Denmark e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_12

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and feminists enact in our relations with the worlds we study, and that which circulates among the actors in the technoscientific worlds we encounter through our studies” (Martin et al., 2015, p. 626). Adding another layer, a number of recent care studies in STS contributions have recognised ‘care’ as an important methodical concern as well (Coopmans & McNamara, 2020; Law & Lin, 2022; cf. Lindén & Lydahl, 2021, pp. 4; 8–9; Martin et al., 2015, p. 626).

Sites and Concepts of Care in STS Two decades after the seminal work of Jeannette Pols’ Good Care (2004) and Annemarie Mol’s Logic of Care (2008), increasingly scholars in the area of care studies in STS have brought attention to caring practices within and beyond empirical research sites within the formal health care sector or the home as site for reproductive care work: Care is researched in fields as diverse as clinics, farms, and slaughterhouses, sites of technoscientific and broader academic knowledge production and data work, to community-driven social, ecological and political activism, as poignantly commented upon as “anything can be a location of care, but not everything is so” (Lindén & Lydahl, 2021, p. 9; see also Martin et al., 2015; Mol et al., 2010; Pinel et al., 2020). Caring is “an essential part of being a researcher and a citizen” (Martin et al., 2015). Meaningful definitions of ‘care’ must be specific to context and dependent to perspective if only due to its multivocality in everyday and scholarly use. Therefore, scholars deny a “single or untroubled definition of care; instead, care is often a site of ambivalence, tension, and puzzlement” (Atkinson-Graham et al., 2015, p. 738; cf. Martin et al., 2015). Influenced by feminist thought, we approach ‘care’ as a relational practice. We argue that caring as researchers is significantly performed through the methods, by which we approach our field sites with. ‘Care-ful method practice’ should include, but not be limited to, practices of listening and responding, being affected by whom or what we encounter, and self-reflecting our ethico-political beliefs and norms in order to account for and be transparent from where and how we engage with and in our respective research field sites (cf. Atkinson-Graham et al., 2015, p. 741). A key sensitivity, then, is to explore to whom or what care is directed towards.

From Care-Ful Research to Care-Ful Method Practice This chapter’s efforts towards more ‘care-ful method practice’ can be seen as yet another attempt to answering Haraway’s (2016) call of “staying with the trouble” by relationally, attentively, and response-ably conducting STS research. Methods do not only effect our analytics concerning ‘care’, methods may be more or less carefully practiced (cf. Lindén & Lydahl, 2021, pp. 8–9).

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The notion of ‘care’ itself already was “prompting the question of how to engage and write in care-ful ways” (Coopmans & McNamara, 2020, p. 2). We set the chapter’s scope on care-ful methods, whilst we focus on methods’ care-ful textual representations rather than method practices throughout the entire research process. Law and Lin (2022) argue, that STS research design is less prone to strict standards but instead created to remain adaptive, iterative, or ‘messy’ (also cf. Law, 2004, 2010). Care-Ful Research, they suggest, is crafted through sensibilities directing care towards core STS concerns—including materialities, heterogeneities and fluidity, meshed relations and logics, normativities, or politics. This care is meant to simultaneously acknowledge what is being made simultaneously ‘absent’ or silenced when paying attention to the former as much as “the performativity of research” (for the notion of absence, cf. Callon & Law, 2004). Law and Lin (2022, p. 13) highlight the “performativity (political and otherwise)” of STS research. Elsewhere, Law (2021, p. 4) stresses the importance of careful research to be carried out with the “wisdom of cultivating a vivid awareness of tensions, multiplicities and difference”. However, this care-ful performativity of STS methods is not explicated in detail. Here we suggest to understand ‘care-ful research’ as a ‘matter of care’ (Puig de la Bellacasa, 2011), asking how we as researchers are (not) performing care through our methods beyond descriptions and analytics of specific doings of care in our empirical field sites. Puig de la Bellacasa (2012, 2017) argues for a shift of perception towards reconceiving ‘matters of concern’ as ‘matters of care’. Rather than attempting (and failing) to turn the ‘unfit’ or ‘absent’ into a standardised ‘matter of concern’, she argues for affectively and intellectually relating to and taking care of formerly ‘neglected’ technoscientific things (and practices). Caring for matters then equates being sensitive to knowledge claims, exclusion and violence towards them (Puig de la Bellacasa, 2017). Across this literature, we identify an interest in with how we as researchers perform care during our research encounters. A particular focus concerns how we strive and enact ‘care-ful method practices’, which is increasingly addressed in diverse strands of care studies in STS and broader STS scholarship. As a second sensitivity for our analysis, we pose a concern with how method performance and its textual representations are used to further the accountability of authors’ research.

Limits of Care Nevertheless, care studies in STS, and particularly feminist technoscience, have taught us over and over again, that care does not always spark joy, good feelings, or positive affects. Depending on context, care might also enact ‘unsettling’ politics of marginalisation and violence (Murphy, 2015) or forms of governance coming with existential epistemic and undesirable affective costs (Viseu, 2015). This leads us to the third sensitivity of this chapter, dealing with care’s limits and exclusions, tensions and frictions, or threats, potentially leading to its undermining as a concern

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of one or more of its layers, which STS scholarship has dealt with (see also Atkinson-Graham et al., 2015, p. 741 ff.; Lindén & Lydahl, 2021, p. 6 ff.; Lindén & Singleton, 2021).

Structure of the Chapter We reflexively engage with how STS methods are (not) performing care, and present ‘methodography’ as a systematising epistemic tool towards more ‘care-ful method practice’. Analysing how researchers are ethnographic of ethnography, and how they account for, render as a subject their own ethnographic research, we perform methodography as a way of caring for methods. In the next section, we introduce the concept of methodography and its promise to act as an interventive tool towards methodically more reflexive, care-ful research. Subsequently, as an illustration and as a meta-methodographic experiment, we re-present three texts representing diverse STS scholarship. This is followed by an analysis, illustrating the heterogeneity with which care is enacted through methods, building on our sensitivities on how care and towards whom care was enacted with methods, how method practices were rendered accountable and which frictions and limits of care appeared in the three cases. In the conclusion, we discuss how methodographic analysis can contribute to method development in STS ethnography more broadly.

Methodography We suggest to understand STS methods as ‘matters of care’ and to attentively scrutinise how we pursue our ethnographic research, to ethnographically describe and analyse our methods’ data practices—this we call methodography (inspired by Greiffenhagen et al., 2011). In a special issue Methodography of Ethnographic Collaboration, we asked scholars from a wide range of STS approaches to develop methodographic analysis, as a genre, interpreting and bringing into words this kind of analysis with and through their research (Lippert & Mewes, 2021). Instead of inquiring prescriptively into “how to” do research (well), we asked researchers how they “practice care for what they encounter and relate to through collaborating” as well as how they “configure accountability relations between researchers, our subjects, objects and our devices, whilst paying attention to how these assemblages are generative of the objects we study” (Lippert & Mewes, 2019). Engaging carefully and (meta) analytically with STS methods can contribute to method development and reflection, as well as to reconfiguring the researcher. As understandings and practices of methods are moved, so is the researcher. More broadly, methodography can be a component in the wider movement of critically and reflexively disciplining STS (cf. Lippert, 2020), specifically by attending to

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method practice, and methods’ necessary adaptions throughout the process, as well as their infrastructures. To illustrate different levels and angles of reflexivity towards STS ethnography’s own methods, we present in the following section three cases—texts—each coming out of different collaborative STS processes that emerged within the recent decade, since 2011. These three cases consider STS ethnographic methods, but differ significantly in quantity and quality not only of explaining why they address methods, but also in how they explicate and reflexively analyse their methods. Following the order of appearance, first, we conduct a methodographic reading of an article by Vicky Singleton and John Law. This article provides insight into The Social Life of Methods project by Evelyn Ruppert, Michael Savage and John Law that produced two special issues (Law et al., 2011; Law & Ruppert, 2013). Second, we turn to the volume Practicing Comparison: Logics, Relations, Collaborations, edited by Deville et al. (2016), which reflexively addresses the achievement of comparative analyses. Here we focus on Madeleine Akrich and Vololona Rabeharisoa’s contribution. Finally, we introduce Alexandra Endaltseva and Sonja Jerak-Zuiderent’s explicit take on methodography, co-constituting a third strand of analyses, indicated by our special issue Methodography of Ethnographic Collaboration (Lippert & Mewes, 2021). The three texts serve to highlight qualitative variation across cases of meta-methodographic analysis, or methodography, of STS ethnography. Implicitly (Akrich & Rabeharisoa, 2016; Singleton & Law, 2013) or explicitly (Endaltseva & Jerak-Zuiderent, 2021), we read the texts as representing three reflexive strands of methodographic work—plausibilising that methodography is applicable across a range of already published STS research.

Meta-Methodographic Experiments: Re-Presenting the Cases Our experimental examination re-presents these texts’ analytical perspectives and the reflexive accounts of the authors’ ethnographic methods in order to highlight how these three cases of ‘methodography’ unfold and render visible how their (more or less) careful attention to methods and methodology qualifies the respective text. This experimental re-presentation shows how methods were rendered visible. The subsequent section conducts an analysis of these cases in relation to how the authors enact care with their methods, how they render their method practices accountable and which frictions and limits become visible in relation to the textual representation of their respective research practice.

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Case 1: Singleton and Law (2013) Formulated in the conversation on The Social Life of Methods, Vicky Singleton and John Law’s “Devices as rituals” (2013) concerns itself with how sets of strategies (enacted in material-semiotic ways) seek to order “discrete social and material field [s] “(2013, p. 260). They frame these sets as devices and explore how various devices interfere with each other, tolerate or resist. For this theoretical investigation, they carefully mobilise Singleton’s research on farming practices and their technocratic accountability systems, seeking to control cattle. Positioning the reader to take note of embodied and situated practice; the authors open the article with a vignette. He would take my elbow and lead me, without saying anything. [. . .] He wanted me to be careful when working [. . .]. He would do the same in the fields, if there was an unusual plant growing or something nesting I had to avoid those places when mowing the grass, and he would keep the cattle off them.1 [. . .]

These words come from Vicky Singleton’s field notes about cattle farming. (2013, p. 259). The footnote “1” leads us to the Notes section. We have very slightly reworded the field notes (p. 272)

we learn. However, we also read “This is Mary speaking a few years ago of her husband Jack” (p. 261): He puts the ear tags in as soon as they are born, usually. It’s easier. You can sit on the calf. He gets one of the lads to do it, or someone else; he can’t easily do it, especially not on his own, he’s not fit enough. (p. 261)

With such voices and words, the authors present a family of farmers and their devices of carefully working with their cattle, comparing these devices-in/as-practice with those associated with the British so-called Cattle Tracing System (CTS). In their analysis, they draw on Stengers’ (2008) take on providing voice and academic space for realities “that are alternative to or outside the logics of capitalist globalisation” (Singleton & Law, 2013, p. 271). Singleton and Law suggest that generating such voices, or protective space, is premised upon ritualised practices that generate openings (which they find in the farmer’s world) that cannot be captured by “intolerant practices” (which they locate in the CTS). That is to say, the method of such a protective space allows accounting for and enacting care. Singleton and Law, in the conclusion, offer a passage in which they liken such a generation of openness for alternative realities to the work in scientific laboratories. They continue, then, tentatively suggesting perhaps social scientists too [. . .] need to [“disconnect [. . .] themselves from all manner of capturing interferences”] if they are to stand any chance of detecting and amplifying unusual realities which are usually drowned out in the colonising practices of intolerant practices.

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They need, that is, to craft [. . .] breathing spaces or protective circles—more or less discrete devices. (p. 271)

This passage illustrates well the objective in their analysis, generating a breathing space, in which the farmer’s practices can be voiced (explicating careful practices), not being dominated by the “intolerant” CTS enactment of cattle (detailing the tolerated and intolerated forms of care). We interpret this methodological edge of their conclusion as qualifying their method of analysis as care-ful.

Case 2: Akrich and Rabeharisoa (2016) Practicing Comparison’s chapter “Pulling oneself out of the traps of comparison” by Madeleine Akrich and Vololona Rabeharisoa presents a “retrospective auto-ethnography” (2016, p. 131), that is, an analysis of the authors’ own research within an European Union funded research project on health care and patient organisations, working with cases based in several countries. The chapter’s objective is to expose and make conceivable the “surprises, uncertainties, and destabilising events” (p. 133), they noted when the authors encountered the figure of comparison. Comparison, in the chapter, appears as a “mischievous spirit” (p. 133), that crops up again and again in often unexpected ways—which the authors needed to carefully work with, around or prevent. This care was needed from the outset because the researchers needed to relate to a seemingly hegemonic cross-national comparative literature (on health systems), but they were committed to care for the specificity of each case of patient organisations. Towards showing their careful manoeuvring around comparison, they chronologically present documentary traces of “how and what [they] did” (p. 131) in their research process. They connect these traces by explaining rationales of why they did what they did. Specifically, the authors account for the figure ‘comparison’ in several of their research interactions. These include authoring their research grant application, coordinating accounts as part of leading the research teams’ practice, and exchanges with reviewers and editors when turning their research into manuscripts. The following extract comments on how they led their research team and how they explain collectively their relation to social science literature. The latter was of interest because the researchers cared not only about the individual cases but also about rendering their research publishable within a discourse that privileged deductive typologies and country-by-country comparison (shaped for instance by reviewer comments). The authors report that they produced a range of conceptual descriptors, derived by literature that would allow comparison of empirical findings. This “challenge” emerged: if not use these descriptors deductively, how to employ these? [To our colleagues] we stated over and over again our priority was to make sense of each case in its singularity while immersing it into a common atmosphere created by our shared methodology and common descriptive language. Everyone played the game of comparing a few descriptors with specific knowledge-related activities that s/he studied. The descriptors which were the easiest to express through empirical data were the most successful and

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allowed the integration of different case studies with a common interpretative framework. (p. 151)

They report that this process allowed them to make a ‘case’ for a notion of ‘evidencebased activism’, arguing that it ‘captured striking similarities [to their] observations’ (p. 151). To recap, the process we went through was one of ‘constant comparison’ (Glaser & Strauss, 1967) which took the form of a loop. The procedure started by travelling to each case individually, eventually returning to the original one with new lenses for augmenting its contrasts. The discussion about existing concepts and the production of original descriptors was embedded into this process, so much so that the group came up as an integrated comparator interlocking individuals, case studies, and notions. (p. 151-2)

This extract illustrates well the narrative voice of the authors’ analysis: they tell about their strategy (and also show extracts of emails, etc. as a form of evidence) and how they communicated it. Here they present a retrospective claim of how they juggled the tension between top-down generic concept application (caring for social science discourse) and letting the cases speak (caring for case specifics), and framing this approach itself as a case of Glaser and Strauss’s (1967) concept of constant comparison (caring for methodology). This juggling allowed the authors to act “within spaces whose contours we carefully demarcated” (Akrich & Rabeharisoa, 2016, p. 152).

Case 3: Endaltseva and Jerak-Zuiderent (2021) Endaltseva and Jerak-Zuiderent’s (2021) contribution to Methodography of Ethnographic Collaboration is dedicated to the study of “Embodiment work in Ethnographic Collaborations”. Based on ethnographic fieldwork in a Russian Multiple Sclerosis (MS) patient organisation, they analyse their ethnographic collaboration as a way of common world-making. Focusing on bodily movement and affect, they develop a careful methodographic reflection. Specifically, they analyse how (their) bodies moved during their ethnographic encounters and how this made them attentive to different speeds of (dis)abled bodies. The authors offer an ethnographic description and analysis inviting us to the Siberian city of Tomsk in Russia hosting an international health conference to describe and analyse this bodily movement and its affect. After the first conference day, a group of conference attendees is on its way to dinner in a nearby restaurant. And the way is the authors’ focus. They present a vignette from Endaltseva’s fieldnotes: Each step composes with Tomsk landscape, history, culture, and everyday rhythms. The walkers’ feet form connections with the ground, a relationship more or less certain or pleasant, depending on the quality of ground at each step, different health states and habitual time zones, and the amount of our familiarity with Tomsk weather. [. . .] Here a bit to the side, the pavement will be better in a moment. Turn left, that street is less noisy; actually, wait—there is more to see here.” [. . .] “Careful, watch your step. Are you still okay to walk? Not tired?” (2021, p. 43)

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In their subsequent analysis of this fieldnote, the authors remark: The walk in Tomsk composes a specific we and crafts the space for this specific us together with Tomsk—researchers, students, and health professionals who take a pause from daily routines to share reflections on the multiplicities of health and illness. Each here is accompanied by different interests, commitments, institutional requirements, or behind-the-scenes collaborators. (2021, p. 44)

Building on this ethnographic analysis, they discuss how their analysis is itself performative: By drawing methodographically on this walk in Tomsk, we craft space and time for a slow, non-abstract, sensory, and embodied composition with and within Tomsk and each other in ethnographic happenings. (2021, p. 45)

Endaltseva and Jerak-Zuiderent conclude the analysis of the Tomsk walk by changing the level of reflexivity once more, thinking through the effect of their methodographic reflection: Our account of the composition work allows us to attend to marginalisation and care in a specific way: The experience of Multiple Sclerosis could not be composed through this walk; due to the fatigue, which puts a body with MS on pause; due to the discriminations which push MS patients into concealing their illness. [. . .] However, this very limitation of our account [. . .] is not a forever-so constraint. [. . .] this limitation fosters through the methodographic re-fragmentation relationships of care (2021, p. 45).

The authors suggest that (the search for) an “ethnographic we” (p. 51, emphasis in original) includes caring for human and non-human actors as well as the jointly produced data and methods assembling the research field. We read this as an invitation by the authors to reflect upon how to build and maintain caring relationships during (and beyond) a collective creation of a world of thinking, (and, due to the absence of MS patients, in this case -not-) moving, and being along. For the authors, careful methodographic analysis becomes a way of “questioning taken-forgranted realities” (2021, p. 50). This research mode of being attentive to the realities of ethnography emerges as a fragile process in time and space, conducting ethnographic observation in motion, with and through researchers’ bodies and affects.

Analysis The three studies perform their methods as visibly present, making use of ethnographic field notes, vignettes or quotes from documents. Showing such elements evokes traces of the empirical. While all three cases present their methods as generating the empirical, Akrich and Rabeharisoa as well as Endaltseva and JerakZuiderent also tell us explicitly about their own methods. Singleton and Law’s study neither addresses their own methods nor, explicitly, other STS scholars’ methods. Instead, the text is written in the voice of a seemingly external “social scientist” who engages with method. To problematise these texts, we use the sensitivities developed in the introduction: (1) How did the authors enact care with their methods? How was

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their research carefully attentive to methods and which modes of care did the authors explicate when engaging with research methods, data, objects and collaboration partners? (2) How do these cases perform and describe methods while boosting accountability? (3) What do these cases include and exclude, which limits and frictions of their research practice do these cases make present?

Caring with Methods Method engagements are central to all three analysed cases, but their enactments of care with methods differ. The main difference in their respective engagement with method practice concerns whom or what the text performs care for. Singleton and Law methodically enact care as empirical-theoretical analytics by unfolding how caring for cattle is organised or imagined within the Cattle Tracing System. We read their empirical-theoretical research focus on devices and practices of caring as a form of ethico-political self-positioning. However, we learn little about the authors-as-STS-scholars/as-social-scientists’ caring practices, i.e., about their affects, doings, and sayings towards their field’s actors during fieldwork. Singleton and Law’s care for cattle and the humans organising their life and death is primarily expressed through a critique of the CTS and its harmful devices. Beyond the detailed focus on farming practices in the ethnographic data, relatively few hints tell us about the interaction between Singleton as ethnographer and her research partners or her construction of empirical materials. Also, the collective thought process, Singleton and Law whilst co-authoring their article, remains invisible. In contrast, in our second case the relationship between different empirical data sets is the text’s focus. Akrich and Rabeharisoa present a retrospective autoethnographic reflection on how modes of comparison allow new forms of relations. They present an analysis receptive to how comparison appears as a notion in their field and during their own ethnographic research. That take presents and utilises a specific mode of ‘caring for comparison’ (which we read as similar to the approach of contrasting analytics in Laurent et al., 2021). Akrich and Rabeharisoas’ care toward the original research project’s actors and practices are addressed elsewhere, or remain silent. The text does not tell its reader whether care was enacted as an analytic category during the original research and does not visibly enact it as a notion to reflect on their collective thought and writing process. Endaltseva and Jerak-Zuiderent’s text is most explicit about their care for methods compared to the other two cases. They scrutinise in detail how care was taking on a generative agency in composing their research field, the notions of care as enacted in it, and how caring for a common concern brought the actors together, into motion and apart. Our three cases care-fully engage with a variety of human and non-human actors in their respective research fields. However, they differ with respect to whom this care is directed, whether it is activated as an empirical-theoretical analytic, as a

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retrospective methodology, or a mode of research involving bodily movement and affect as a method-making ‘research tool’.

Accountability The second problematisation concerns accountability. Rendering method accountable often appears as part of a professional disciplinary curriculum. In anthologies or monographs, accounts of methods are frequently included in the introduction or an appendix. One could argue this genre acts as a mere success story legitimising one’s expertise to contribute to the respective field of research. Specific to STS is that these professional identities are commonly hybrid and heterogenous, including e.g., past or present engagement as practitioners or activists. We identify two distinct modes of legitimising the authors’ methods. One mode consists of positively relating to social science method literature, claiming an alignment. Akrich and Rabeharisoa summarise their method as achieving ‘constant comparison’ (2016, p. 151), which they refer to Glaser and Strauss’s The Discovery of Grounded Theory: Strategies for Qualitative Research, which Google Scholar, as of 15 October 2023, presents as cited 164.209 times. This citation count indicates its status as a key symbolic resource in social science writing. The notion of ‘constant comparison’ is evoked by Glaser and Strauss to call for a systematic and ‘explicit coding procedure’ (1967, p. 102) that is combined with a process of theory generation in which a constant redesign and reintegration of the analyst’s theoretical notions is achieved whilst they review their material (1967, p. 101). In Akrich and Rabeharisoa’s take, in contrast to Glaser and Strauss’s call for systematic and explicit coding and analysis, we are presented with the framing of their method as a ‘game’, in which they compared ‘a few descriptors’ with their specific data, noting that the ‘most successful descriptors have been the ones, ‘easiest to express” (2016, p. 151). Carefully, Akrich and Rabeharisoa’s substantive discussion avoids the language of the strict and systematic requirements of Grounded Theory. An alternative mode of relating to social science method is observable in Singleton and Law’s strategy. They legitimise their own work by explicitly distancing themselves from social science method (resonating, of course with, e.g., Law’s After Method (2004)) which, they claim, effect ‘intolerant’ and ‘colonising practices’ that ‘captur[e] interferences’, ‘drown[ing] out ‘unusual realities’ (2013, p. 271). Given their critique, they do not have to invest words into performing alignment with social science methods (whilst, positively, investing their text in substantiating their critique). Yet, by presenting their vignette(s) and modalising these as ‘very slightly reworded’ (p. 272), they evoke a realist mode of presenting an empirically observed reality. In the foreground, though implicit, here is a trace of method that achieved data, representing the real, which legitimises their analysis as grounded in a real. In our third case, Endaltseva and Jerak-Zuiderent render their own ‘method’ practices accountable through methodography throughout the entire text. In relation to accountability, we read this as a value-driven commitment to transparency about

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their research practice towards themselves as a team of authors, us as readers, and their research partners. Across these three modes of accountability, we sense friction. The implicit or explicit relation to standards of method in empirically informed social science sits in tension with STS analyses that consider it necessary to problematise subjecting material to method and diverse audiences that the texts implicitly perform accountability towards.

Limits and Friction Our third problematisation deals with ways, limits and frictions appearing and/or a being addressed in the three cases. Consider again Akrich and Rabeharisoa’s (2016, p. 151) statement The descriptors which were the easiest to express through empirical data were the most successful and allowed the integration of different case studies with a common interpretative framework.

This description leaves something hidden: how did the descriptors fare that were difficult to express through the ‘empirical data’? At first glance, it seems the descriptors that sat in more friction with the empirical material were not allowed to co-constitute the ‘common interpretative framework’. However, were these non-easiest descriptors simply and effectively ignored, not part of the interpretative repertoire, even if not formally ‘allowed’ in? The readers do not learn about how these may, in all likelihood, continue to play a role (not only as an absent presence in Akrich and Rabeharisoa’s paper), but maybe also for the authors of the descriptors in their distributed interpretative labour. We can only speculate. The friction is hidden in the plain. Differently hidden, but rather marginalised is the grounding of the method of generalisation that infrastructures Singleton and Law’s text. Again, positively, their paper focuses on the Cattle Tracing System and farmers’ practices. So, the focus is on others’ method devices, not their own. To analyse the farmers, as part of their paper’s argumentative and scholarly infrastructure, they sketch literature on ‘craftwork and its skills’ (2013, p. 264). They, then, tell of a farmer they encountered in their study in a way that resonates with the claims of the literature. Then they let us know So, skilled craftwork lies at the heart of the repetitions of farming (p. 264)

We read their ‘So’ as a transition that evokes that what follows the phrase as a consequence, or a concluding summary, of the preceding. Substantially, they conclude by combining a short literature review with resonating evidence about the farmer (whom Singleton observed): ‘[C]raftwork lies at the heart [. . .] of farming’. The authors generalise. We are not shown a discussion of evidence that could be interpreted as questioning the claim about the substance (‘heart of’) of farming. In

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short, the generalisation is developed implicitly and at pace, missing nuance. With the authors’ argument, and against the authors’ generalisation, we might wonder, whether the generalisation colonises the material, muting frictions (well, at the margin of their overall argument). Alternatively, the generalisation might be read as a short-hand, evoking a ‘collateral realit[y]’ (Law, 2013). Embracing friction is the approach taken by Endaltseva and Jerak-Zuiderent. In re-telling their analysis of the walk-in in which Endaltseva moved with MS patients, they find that in the walk, MS patients had to ‘put [. . .] a body with MS on pause’, reasoning that in participating in the walk ‘push[ed] MS patients into concealing their illness’ (2021, p. 45). For the authors, ‘not including those who live with MS in Russia directly in this walk’ constituted a ‘limitation’ (p. 45). Considering how the participants moved and how their analysis in the paper moves, the authors note friction, engaging with how the body participates, is in- and excluded in ethnographic collaboration. In their methodologically slow methodographic attention, friction emerges in such embodied and emplaced ways but also emerges to highlight how actors think together without perfect alignment, without complete disconnect, but somewhat in touch, even if only in epistemic touch. So, to use the problematic and generative move that we have problematised above for Singleton and Law’s paper, Endaltseva and Jerak-Zuiderent problematise the frictions in their method and analysis.

Conclusion Building on attention to care as a theoretical-empirical concern, analytic category or mode of research in recent scholarship in care studies and broader STS, the chapter introduced methodography as an analytic tool and then conducted a metamethodographic analysis of three recent STS texts. We analysed how the authors in these three cases textually represented specific enactments of care, focusing on care-ful method practice. Our analysis paid particular attention to the objective of care and how care was enacted through method practice, how method practices were solidified as accountable and how the three cases tackled care-related frictions and limits. In our analysis’ subsection “Caring with Methods” we showed, how our three cases considerably differed with respect to whom or what they direct care towards, whether or not it is activated as an empirical-theoretical analytic, as a retrospective methodology, or a research mode comprising the body, its movement and affects. This diversity highlights the range of plausible modes of caring with methods, whereas it may be aiming towards our research concerns, matters and/or research partners. In the subsection on “Accountability”, we first identified two distinct modes of legitimising the authors’ methods as positively relating to or distancing themselves from canonical social science method literature. Then, we investigated

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methodography as a third mode of fostering accountability by enhancing transparency concerning the situated practices that comprise our methods in motion. Our final subsection traces “Limits and Frictions” in the three cases. These differ with respect to the detailing of limits or frictions, their generalisation or how frictions in research method and analysis are embraced. We suggest these results indicate how our meta-methodographic experiment is productive and, as an extension of methodography itself, allows us to detail modes of textually assembling care-ful research practice. We propose methodography as a methodically focused contribution to conducting STS ethnography in complex research ecologies composed of heterogenous (more-than-human) actors. Methodographic analysis of our methods reminds us of the limits and ends of care, and emphasizes that all-encompassing care is neither possible nor desirable. Consider methodography as a mode of care-ful method practice: it contributes to STS by caring for common key issues that shape and emerge in (STS) ethnography, such as multiplicity, being attentive to our relations and affects as well as difficult negotiations, interruptions, limits and ends. With methodography as an interventive tool for such careful interrogation of method practice, we suggest, ethnographers can explore research ecologies, beyond the flowers of research, the thicket, its various actants, monsters and beasts through which ethnographers generate knowledge. As graphy, methodography invites a form of partially accounting for, and problematising, complexity in ethnographic encounters. For STS, methodography contributes by taking on a middle ground between the moves of legitimising method by reference to standards, accountability and attention to limitations and frictions and of opposing methods standards: methodography can mobilise careful attention to what is rendered common and uncommon in research practice. Instead of supporting a mode of normatively disciplining STS that focuses on locating STS research on maps and produces common concepts, methodography is generative of descriptive analysis of STS. In sum, our methodographic interest brings into focus how method is performed and presented, in this chapter’s case, within publications. We find the publications as mobilising some form of method to question method, with methods, against method. All these implicit or explicit enactments of method appear productively problematisable, including but not limited to notions of care, accountability, limits and friction. Our methodographic metaanalysis is meant as an invitation to understand method practice as a care-ful intervention that moves how we are positioned as researchers: From using method to get research done, to the troubles of doing research.

References Akrich, M., & Rabeharisoa, V. (2016). Pulling oneself out of the traps of comparison: An autoethnography of a European project. In I. J. Deville, M. Guggenheim, & Z. Hrdličková (Eds.), Practising comparison: Logics relations collaborations (pp. 130–165). Mattering Press, Manchester. https://doi.org/10.28938/9780993144943

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Mol, A. (2008). The logic of care: Health and the problem of patient choice. Routledge. eBook ISBN 9780203927076. Mol, A., Moser, I., & Pols, J. (2010). Care in practice: On tinkering in clinics, homes and farms. Transcript, Bielefeld. ISBN 978-3-8376-1447-3. Murphy, M. (2015). Unsettling care: Troubling transnational itineraries of care in feminist health practices. Social Studies of Science, 45(5), 717–737. https://doi.org/10.1177/ 0306312715589136 Pinel, C., Prainsack, B., & McKevitt, C. (2020). Caring for data: Value creation in a data-intensive research laboratory. Social Studies of Science, 50(2), 175–197. https://doi.org/10.1177/ 0306312720906567 Pols, J. (2004). Good care: Enacting a complex ideal in long-term psychiatry. University of Twente, Twente. ISBN 90-5253-471-3. Puig de la Bellacasa, M. (2011). Matters of care in technoscience: Assembling neglected things. Social Studies of Science, 41(1), 85–106. https://doi.org/10.1177/0306312710380301 Puig de la Bellacasa, M. (2012). ‘Nothing comes without its world’: Thinking with care. The Sociological Review, 60(2), 197–216. https://doi.org/10.1111/j.1467-954X.2012.02070.x Puig de la Bellacasa, M. (2017). Matters of care: Speculative ethics in more than human worlds. University of Minnesota Press. Minneapolis and London. ISBN 978-1-5179-0065-6. Singleton, V., & Law, J. (2013). Devices as rituals. Journal of Cultural Economy, 6(3), 259–277. https://doi.org/10.1080/17530350.2012.754365 Stengers, I. (2008). Experimenting with refrains: Subjectivity and the challenge of escaping modern dualism. Subjectivity, 22(1), 38–59. https://doi.org/10.1057/sub.2008.6 Viseu, A. (2015). Caring for nanotechnology? Being an integrated social scientist. Social Studies of Science, 45(5), 642–664. https://doi.org/10.1177/0306312715598666

Julie Sascia Mewes is a science and technology studies scholar and social anthropologist. Her research focus on tacit knowledge, daily routines and habits, social studies of technology, and ethnographic method development. Julie currently holds a position as scientific coordinator and postdoctoral researcher at the Citizen Science Research Unit at the Museum für Naturkunde Berlin, Germany. Her doctoral research focused on technologies of everyday (re-)qualification in German occupational therapy and the process of the profession’s ongoing academicization (HU Berlin, 2019). In her postdoctoral research project “Matters of Sleep—Sleep devices in the everyday life of Norwegian hospital staff”, she ethnographically investigated the sociomaterialities of sleeping (Mewes 2021, 2023, 2023b). Methodically, she works with a range of ethnographic methods, including praxeography and other practice- and device-centered interview and participant observation techniques, as well as participatory methods. Her interest in daily knowledge practices led her to her current research project, which explores epistemic practices in citizen science projects and social epistemologies of citizen science as a research approach. As a national hub for citizen science, the highly interdisciplinary research team at MfN Berlin is the ideal environment to engage in the further development of citizen science studies as a subfield of STS. Ingmar Lippert is a sociologist of science, technology and the environment, with a focus on data practices and infrastructures, firmly embedded with Science and Technology Studies. He conducts his teaching and research at the Institute of Cultural Anthropology and European Ethnology at Goethe University Frankfurt. Ingmar also organises research as co-PI of the project “Socio-cultural Values of Carbon”, hosted by the IT University of Copenhagen. Based on research at National University of Singapore, the IT University of Copenhagen, the Museum of Natural History Berlin and Brandenburg University of Technology, Ingmar has recently edited collections on analytics of number practices (with Helen Verran) and on STS ethnographic practice (with Julie Sascia Mewes), both in the journal Science & Technology Studies. In parallel, Ingmar has conducted research on the intersection of digitalisation, environmental and energy politics as well as poverty. Currently he works on infrastructures through which heritage politics are regionally configured within Lusatia, Germany, the territory claimed by the autochthonous people called Sorbs.

Part III

Affects in Care and Engagement

Chapter 13

Practicing Care-as-Affect and Engagement-as-Critique: Careful Engagement in Socio-Technical Integration Research and Video-Reflexive Ethnography Mareike Smolka and Jessica Mesman

Introduction Research in Science and Technology Studies (STS) shows growing interest in collaborative modes of engagement. Such engagements embed social scholars in scientific, technical, and medical environments to enhance reflexivity and improve work practices. The “collaborative turn” (Farías, 2016) committed to mutual learning and caring relationships is closely related to the “engaged program” in STS (Sismondo, 2008). For many engaged STS scholars, the theoretical ambition to analyze social dynamics shaping practices in science, medicine, and technology development is continuous with the aim to render these practices more socially responsive, sustainable, safe, and effective. Approaches to collaborative engagement span practice improvement research (Iedema et al., 2013), action-oriented science studies (Zuiderent-Jerak & Jensen, 2007), engagement research (Gjefsen & Fisher, 2014), and making & doing projects (Downey & Zuiderent-Jerak, 2021). Complications to the practical pursuit of these approaches are usually attributed to power hierarchies (Rabinow & Bennett, 2012), multiple commitments (Nickelsen, 2009), and an engaged scholar’s insider/outsider position (Freeth & Vilsmaier, 2020). Some scholars have pointed at the “affective costs” (Viseu, 2015, p. 5) of M. Smolka (✉) Knowledge, Technology and Innovation, Wageningen University & Research, Wageningen, The Netherlands Human Technology Center, RWTH Aachen University, Aachen, Germany e-mail: [email protected] J. Mesman Knowledge, Technology and Innovation, Wageningen University & Research, Wageningen, The Netherlands Faculty of Arts and Social Sciences, Maastricht University, Maastricht, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_13

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being perceived as a distant critic whose contributions are purportedly adversarial. Others emphasize the risk of “seduction” (Nickelsen, 2009, p. 11) into uncritical service for a powerful collaborator, which may compromise their own research agenda. As opposed to such accounts of vulnerability, an emerging body of STS literature points to the productive role of affects in interdisciplinary collaborations where the experience of tensions can “crack open spaces for critical reflection on normalized practices” (Smolka et al., 2020, p. 3; Jerak-Zuiderent, 2013; Hillersdal et al., 2020). Building on the last-mentioned body of literature, we study how attending to discomforting affects enhances social bonds and contributes to knowledge production in collaborative engagements. We ask: how are affects experienced, modulated, and regulated in collaborative engagement research? How do they shape the dynamic positioning of engaged social scholars? How do they facilitate collaborative engagements and their social, epistemological, and practical outcomes? In answering these questions, we contribute to ongoing discussions on the role of affect in mundane realities of collaborative modes of STS research (Balmer et al., 2018; Callard & Fitzgerald, 2015; Latimer, 2019). We suggest that paying attention to and working through unsettling affects can help to cope with difficulties related to epistemological and cultural differences (Prainsack et al., 2010; Rabinow & Bennett, 2012; Viseu, 2015). We acknowledge that other resources, such as alternative communication strategies (Fitzgerald et al., 2014) and experimental practices (Delgado & Åm, 2018), have been deployed to handle such difficulties. Yet, unruly affects and their productive effects on collaborative outcomes are underanalyzed elements of collaborative engagements. We analyze affectively charged-moments in two collaborative engagement studies in which we performed the role of engaged social scholars: socio-technical integration research (STIR) in a clinical trial and video-reflexive ethnography (VRE) in a medical center. Although our analysis draws on and speaks to STS research, we refer to (engaged) social scholars whenever we talk about STIR and VRE because these methods are not only used within STS but also in other social science fields. We selected the abovementiond studies because Smolka (2020) proposes that STIR and VRE enable engaged scholars to position themselves in-between adversarial critique and uncritical service by enacting generative critique. Drawing on Verran (2001), we define generative critique as a form of critique that can generate openness for change in thought and action. It is a practice that “springs from creative ways to deal with tensions between different ways of seeing and approaching the world” (Smolka, 2020, p. 4). Paying attention to unsettling affects pre-empts these tensions from going unnoticed, facilitates a reflexive engagement with normalized arrangements, and opens up “alternatives to what is hegemonic” (ibid). We examine Smolka’s proposal by looking at different kinds of affect through the theoretical lens of careful engagement. As we explain more in detail in Sect. 3, our understanding of careful engagement combines care-as-affect with engagement-as-critique. While care-as-affect highlights the affective attachments that emerge within collaborative projects, engagement-as-critique acknowledges potential for generative critique in such

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projects. For this potential to actualize, social scholars need to feel into the affective fabric of collaborative inquiries and handle their affective attachments in a way that positions them neither as overly critical outsiders nor as uncritical service providers. We find that disconcertment and ambivalence helped us navigate our positionality and stimulated changes in thought and action in our collaborations. For these affects to play such a productive role, we engaged in different forms of careful engagements: careful assimilation and careful scrutiny. These forms of careful engagements generated situated collaborative outcomes. While careful assimilation stimulated reflexivity and reciprocity, careful scrutiny helped to recognize multiplicity and fostered mutual respect. These outcomes built interpersonal rapport and contributed to collaborative knowledge production.

Affects Affects and emotions have sparked a resurgent interest in STS (Cozza, 2022) dating back to Max Weber, Ludwig Fleck, and Robert Merton (Parker & Hackett, 2014). Research has drawn attention not only to embodied ways of knowing in science and medicine (Collins, 2012; Harris, 2016; Lorimer, 2008), but also to affective entanglements between researchers and their study subjects (Pickersgill, 2012), patient groups (Lindén, 2021), research data (Pinel et al., 2020), and colleagues (Kerr & Garforth, 2015). While the conceptual distinctions between affects and emotions are debated in affect theory (Leys, 2011; Seigworth & Gregg, 2010), we see emotions as individuated and affects as relational (Latimer & Miele, 2013; Lydahl et al., 2020). We are interested in ways in which affects relate subjects and objects, how they bind subjects together, and how affects and their circulation shape practices (Ahmed, 2004; Wetherell, 2012). In particular, we focus on disconcertment and ambivalence, which we distinguish through the diverging relations and bodily feelings that these affects evoke. We understand disconcertment as an unsettling feeling of “seeing certainty disrupted” (Verran, 1999, p. 141). It has been analyzed as a bodily indicator for epistemological, metaphysical, and ethical differences in intercultural encounters (Christie & Verran, 2013; Law & Lin, 2011) and interdisciplinary collaborations (Hillersdal et al., 2020; Smolka et al., 2020). Its disruptive qualities have been shown to open up possibilities to think and act in ways alternating from hegemonic regimes (Verran, 2001, 2011, 2018). Similar to the discomforting quality of disconcertment, ambivalence is also seen as an undesirable state that results in a distressing experience “of contradictory emotions toward the same object” (Weigert, 1991, p. 21). Informed by Kieran and Bell (2017), Shanley (2022) argues that scholars should not hide their ambivalence but use it as a methodological resource to recognize when hegemonic classifications and polarizations do not fit. Ambivalence highlights “what is going on between the poles” (p. 211) for the sake of reframing, compromising or drawing connections across poles. For example, by working with ambivalence, Fitzgerald et al. (2014) managed to conduct an experiment that connected different

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kinds of knowledge across hierarchies of expertise in an interdisciplinary group of researchers.

Careful Engagement To analyze how affects relate to social scholars’ positionality in collaborative projects, we introduce the concept of careful engagement as a combination of care-asaffect and engagement-as-critique. Care studies in STS inspired by Puig de la Bellacasa (2017) approach care as practical labor, an ethico-political obligation, and an affective state. The affective dimension of care reintegrates affectivity into science by highlighting that knowledge production “is about being touched rather than observing from a distance” (p. 93). Researchers learn to feel their subject matters while engaging with molecules (Myers, 2015), laboratory animals (Friese, 2013), and interviewees (Müller & Kenney, 2014). They do not only perform the primarily goal-oriented labor to “care for” their study objects/subjects, but also “care about” them by nurturing affective attachments (Schrader, 2015, p. 668). These affective attachments, however, are not necessarily associated with positive feelings since an affective disposition of care may involve concern, worry, and the moral pressure to take responsibility for something or someone else (Murphy, 2015). In the perspective of care-as-affect proposed here, foregrounding care in engagement research reminds us that engaged social scholars can develop equivocal and incompatible affective attachments in the process of collaboration. To further think about the affective attachments that constitute and grow around engaged scholars’ positionality, we approach engagement as a form of critique. The concept of engagement is connected to the ‘activist’ branch of STS interested in promoting democratic reforms of science and technology (Fuller, 1993). With the shift toward project-based funding of scholarly work, a somewhat different engagement has emerged, which recognizes that STS research on work practices can contribute to their improvement (Lynch, 2009). Both forms of engagement have given rise to discussions about the positionality and attachments of engaged scholars (Jensen, 2012; Zuiderent-Jerak, 2015; Zuiderent-Jerak & Jensen, 2007). These discussions emphasize a tension between intellectual interests whose pursuit requires critical distance and a wish to get closer to grasp what matters most in practical environments and demonstrate “usefulness of STS” (Jensen, 2007). We suggest that social scholars can navigate their positionality by performing engagement as generative critique. Informed by Niewöhner’s (2016) reading of Verran (2001), Smolka (2020) describes generative critique as an emergent property of collaborative inquiry in which people with different backgrounds question how objects, practices, and phenomena come into being and gain a natural status in particular contexts. By revealing the contingency of what is considered as natural or hegemonic, such an inquiry is generative of alternative ways of approaching problems. Generative critique depends on social scholars’ embodied skills to carefully attend to their affective involvement and an open-ended process of

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“experimenting with different ways of seeing-and-being-in-the-world” (Niewöhner, 2016, p. 10). On the one hand, experimentation in engagement research highlights that to understand something, social scholars, just like experimental scientists, must manipulate and change it. On the other hand, they must empirically trace how they are always already intervening through their multiple attachments that are partly pre-defined and partly emerging once they enter practical environments (Mesman, 2007; Nickelsen, 2009). We connect care-as-affect with engagement-as-critique to analyze how engaged social scholars sort affective attachments to navigate their positionality in-between critical distance and co-opted service. Jensen (2007) uses the expression “sorting attachments” to refer to “the processes through which researchers, by affinity or implication, become tethered to institutional and political ‘machines’ [configurations of materiality and discourse], which may be quite different from their own but nevertheless shape their research questions, methods and conclusions in multiple ways” (p. 239). While Jensen uses the term ‘attachment’ to point out that engagement depends on collaborators’ pre-existing cultural, political, and economic commitments, we focus on its affective quality. The verb ‘to sort’ emphasizes that engaged scholars can deliberately arrange and shape these attachments rather than taking them as given. By looking through the lens of careful engagement, we see different ways in which social scholars relate to their collaborators affectively and thereby generate epistemological, social, and practical outcomes.

STIR and VRE We analyze careful engagement in socio-technical integration research (STIR) and in video-reflexive ethnography (VRE). STIR and VRE are two forms of collaborative engagement research (Downey & Zuiderent-Jerak, 2017; Gjefsen & Fisher, 2014) which facilitate collaborative inquiry into everyday routines and decision-making through co-description and deliberation. In taking our cue from Rheinberger (2011), we consider both STIR and VRE as experimental in the sense of being open-ended, cross-disciplinary inquiries that open up classified knowledge. STIR is among the range of methods that observe and probe capacities of scientists and engineers to respond to the socio-ethical dimensions of their work (Fisher et al., 2015). VRE has been applied for studying and contributing to practice improvement in professional settings, healthcare settings in particular (Iedema et al., 2019). Analyzing careful engagement in STIR and VRE indicates that the concept is applicable across empirical contexts and collaborative engagement methods. At the same time, the methods are so similar in nature that they provide comparable frames in which the specificities of different forms of careful engagement can be analyzed. The following introductions to STIR and VRE reveal that they share four methodological elements: (1) collaboration across professional or disciplinary divides, (2) physical proximity of collaborating parties, (3) a material object that facilitates communication and collaboration, and (4) contributions to practical change in everyday work flows.

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STIR typically embeds an engaged social scholar in a technoscientific space to conduct regular dialogues with one or more technoscientific collaborators (Fisher, 2007). Dialogues are guided by the STIR decision protocol, a 2 × 2 matrix on a piece of paper, white board, or digital device that serves as a “boundary object” (Star & Griesemer, 1989). The boundary nature of the protocol implies that it is simultaneously concrete and abstract so that it can adapt to local needs of a particular dialogic interaction while preserving its identity across time and place (Fisher & Mahajan, 2010). It organizes reflection on an impending decision around four components—opportunity, considerations, alternatives, outcomes—and includes semi-structured questions meant to unpack the socio-ethical dimensions of work practices (Fisher & Schuurbiers, 2013). To guide the collaborative inquiry and trace its effects on practices (Flipse et al., 2013; Lukovics & Fisher, 2017; Schuurbiers, 2011), the engaged STIR scholar draws on participant observation and interviews. We analyze a methodological adaptation of STIR in line with Fisher’s (2018) proposal to deploy STIR in focus groups. The decision protocol was used to moderate a group discussion on a decision that research team members identified as relevant to their work practices. VRE has been used in three collaborative configurations involving professionals and an engaged VRE scholar (Mesman, 2015), a team of VRE scholars (Carroll & Mesman, 2011), or an interdisciplinary research group (Korstjens et al., 2021). It aims at “exnovation” (Iedema et al., 2013, p. 67; Mesman, 2011), which exposes the existing but oft-overlooked strengths within practices to reflection, learning, and improvement (Carroll et al., 2021; Iedema et al., 2012; Wyer et al., 2015). VRE facilitates exnovation by filming ordinary practices, selecting and editing footage in a collaborative process, and organizing regular group sessions in which professionals view and discuss video clips. Their involvement in agenda-setting, data collection, analysis, and, sometimes, publishing results turn participants into “coresearchers” (Wyer, 2017, p. 68). To facilitate the research process, VRE scholars adopt the role of a “clinalyst” (Iedema & Carroll, 2011). The “clinalyst” is a short form for “outsider-analyst-catalyst” (p. 176) who mobilizes ‘insider’ knowledge of professionals through ‘outsider’ questions that stimulate learning in reflexive group sessions. For VRE scholars to act as clinalysts in professional environments, a solid foundation for collaboration is established through “iterative preparatory work” (Mesman & Carroll, 2021, p. 166), such as relationship building. We analyze the role of affect in a STIR group discussion and during preparatory work of an interdisciplinary VRE team. Affect has gained little attention in STIR (for an exception, see Conley, 2014), but recent studies call for paying systematic attention to affective resources and costs as a methodological component of integrative research (Branch & Duché, 2022; Smolka et al., 2020; Smolka, 2022a). Along these lines, affect has been explored as a research topic and method in VRE (Collier, 2013; Hor et al., 2023; Iedema & Carroll, 2015). VRE has been shown to support healthcare professionals in identifying and steering affective complexities of their work (Iedema et al., 2013; Wyer et al., 2017). Moreover, Carroll and Mesman (2018) introduce “affect-as-method” as a mode of VRE in which “the knowledge construction and the VRE intervention are actually birthed from what is tacitly or viscerally

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‘felt’” (p. 1150). To expand on affect-as-method, our analysis illuminates how particular affects shaped our research processes.

Analysis of Vignettes The STIR and VRE projects presented here were not conducted with a focus on affect in mind. Instead, we acknowledge retrospectively that we experienced moments of affective intensity whose impacts on our collaborative engagements deserve further investigation. We reconstruct some of these moments based on fieldnotes and transcripts of reflexive sessions in the form of vignettes. The vignettes are crafted sketches that illustrate how we see affects through the lens of careful engagement. Our analysis focuses on disconcertment and ambivalence because we noticed them to be defining features and major facilitating factors of our collaborations. In trying to capture and convey these affects, the work of crafting and redrafting that went into writing the vignettes was aimed at enabling readers to emphasize with the “mess of the experience” (Verran, 2021, p. 243) that we felt as collaborators “in the flesh” (p. 239). At the same time, we write as analytic autoethnographers “in the text” (ibid.), who “translate what they have comprehended viscerally into conceptual language of their scholarly discipline” (Wacquant, 2004, p. 467; see also Anderson, 2006). To analyze how affects relate to different forms of careful engagement without leaving the vicissitudes of lived experience behind, we alternate vignettes with analytical sections.

Stimulating Reflexivity and Reciprocity through Careful Assimilation in a Moment of Disconcertment in STIR Smolka conducted a STIR study at the biomedical research institute Cyceron in Caen, France, where she joined the research team of the Silver Santé Study. The Silver Santé Study was funded by the European Commission Horizon 2020 program from 2016 to 2020 to investigate the impact of mindfulness and compassion meditation on healthy aging. A part of the project is the Age-Well randomized controlled clinical trial which compares the effects of practicing meditation versus following a foreign (English) language program over a period of 18 months in a group of 137 healthy elderly participants. Although Age-Well investigates the effects of the meditation and the foreign language intervention on a range of cognitive, behavioral, biological, sleep, and neuroimaging measures, the main objective is to compare effect sizes regarding changes in volume and cerebral blood flow in the anterior cingulate cortex and the insula (Poisnel et al., 2018). Smolka’s collaboration with the Silver Santé team sought to probe the capacities of researchers to reflexively engage with ethical challenges in the process of data

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collection in Age-Well. The collaboration was set up as a two-phase STIR study. In the first phase from September to December 2018, STIR dialogues took place on a biweekly basis with four members of the research team. In the second phase from October to December 2019, laboratory ethnography was conducted to examine the effects of the first phase. At the end of each study phase, Smolka conducted a reflexive group session to feed her observations back to the research team. Although disconcertment was a prevalent experience and productive resource throughout the entire STIR study (Smolka, 2022a), we focus here on a moment of disconcertment that highlights how Smolka stimulated reflexivity through careful assimilation. Smolka experienced disconcertment during a reflexive group session with 13 participants in December 2019. In the session, she explained the STIR decision protocol to the research team and offered them five questions which, over the course of their ongoing collaboration, had stood out—in her view—as opportunities for decision-making relevant to most team members. The group swiftly gravitated to the question: whether and how to disclose health-related individual results of study examinations to Age-Well participants. While listening to the researchers’ conversation about whether or not they would like to settle on that question, Smolka experienced a moment of disconcertment. After I had ended my presentation with a list of opportunities for decision-making, only a few researchers raised comments, intermitted by awkward moments of silence. I was worried that they might not have comprehended my talk fully because I had negligently let too many STS concepts slip in. This made me feel queasy, and I even experienced a pronounced twist in my stomach when a researcher remarked that the question about the disclosure of individual results was already answered. The researcher explained that the study protocol, informed by international guidelines for good clinical practice, defined exactly how to proceed if study examinations produced abnormal results indicative of health hazards.

Smolka sensed a difference between the researcher’s understanding of ethics as rule following and her own observations of situational ethics practices in Age-Well. The researcher seemed to follow familiar patterns of equating ethics with research regulation, which required ‘ethics management’ instead of ‘ethics deliberation’ (Aircardi et al., 2018; Maasen, 2018). This conception of ethics stood in sharp contrast to Smolka’s observation of negotiations among researchers about how to do ‘good research’ in specific incidences that were not covered by the study protocol (Smolka, 2022b). Instead of expressing her embodied sense of difference, Smolka down-regulated her disconcertment: I resisted the impulse to justify my selection of questions for discussion and took a step back. I was carefully listening to identify moments in which my interventions would help follow the STIR decision protocol or would subtly push the group to think about concrete cases in which they struggled with communicating individual results to participants. Most of the time, however, I focused on writing down what the researchers said, making sure that I closely sticked to their terminology. Despite my efforts to integrate in the research group over the last months, I realized that researchers were still perceiving me as a foreign social scholar. This I experienced as unsettling, and, following my disconcertment, I tried to demonstrate that I grasped their considerations, meticulously taking notes of the discussion on the whiteboard.

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The vignette illustrates how Smolka carefully sought to align with her collaborators, by using terms, values, and concepts they would recognize. She tried to alter her ingrained scholarly habitus to move with her collaborators’ concerns. In mapping their decision-making processes with the STIR method, the Silver Santé team members revealed situational interpretations of the study protocol and their context-specific judgments about which course of action would be ethical in a given situation. They acknowledged that they made “case-by-case” decisions in following general rules and procedures laid out in the study protocol. It was not until the end of the session, while processing what the researchers had discussed and how her performance in guiding the group through the STIR protocol was perceived by them, that Smolka’s disconcertment dissolved. At the end of the discussion, the Silver Santé team concluded that whether and how to disclose individual results to participants was an intricate question, which they had answered repeatedly with the phrase “it depends.” I feared the team would leave the session with a lingering impression that this was not worth their time, asking themselves “what this was good for,” because no clear-cut solution had been reached. When a PhD researcher approached me later on to thank me for the “useful discussion” and asked me if the discussion had also been relevant for my PhD research, I felt relieved, but was also caught off guard by her question.

Although, back then, Smolka was unsure how to answer the scientist’s question, she realized later on that the group session was crucial for her PhD research for it had altered the relation between her and her collaborators. It fostered their rapport by strengthening their mutual affective attachments. The group discussion made the Silver Santé researchers aware that Smolka understood their concerns and prioritized them over her own: asking them to choose a question for discussion, minimizing appeals to her expertise and values, and trying to probe them in ways that would be helpful for them. In return, the researchers cared for what was relevant to Smolka, making efforts to meaningfully contribute to her PhD project. The collaborative process enhanced their rapport because it made tangible that mutual understanding and reciprocity were possible despite disciplinary differences. Reciprocity, instead of being reduced here to a logic of exchange, refers to a sense of “obligation to reciprocate attentiveness to others” (Puig de la Bellacasa, 2017, p. 120) because one cares affectively for their becoming. The emergence of reciprocity helped Smolka and her collaborators draw connections between different conceptions of ethics: ethics as rule following and ethics as situational judgment. Enhanced reflexivity about ethics was contingent on the affective attachments across disciplinary divides that emerged through Smolka’s careful assimilation.

Recognizing Multiplicity and Mutual Respect by Working through Ambivalence with Careful Scrutiny in VRE Whereas the previous empirical section analyzes careful engagement between an engaged social scholar and her collaborators whose practices were studied on the

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basis of STIR, this example focuses on careful engagement within the interdisciplinary research team guiding a VRE project. Mesman reflects retrospectively on moments of affective intensity during the preparatory work of a study on collaboration in maternity care. In maternity care, midwives and obstetricians work together to secure a birth trajectory that is safe for both mother and child. To further improve care practices, a team of midwifery scientists in Maastricht commenced a study on the collaboration between community-based midwives and hospital-based obstetricians, as well as their interactions with parents (Korstjens et al., 2021). To shed light on unintended forms of effective collaboration, the research team used VRE for data collection and analysis, in which professionals and parents would act as co-researchers. As an expert in the VRE method, Mesman was invited to join the project. Together with a midwifery scientist (the PI) and a PhD student trained in anthropology, they formed the core of the research team in charge of the project. Before commencing fieldwork in midwifery practices and on delivery wards, the team performed a scoping study of the available literature to identify factors that contribute to good collaboration in midwifery care (van Helmond et al., 2015). For Mesman, the exercise of a scoping study was a new experience. Until then, VRE had been her main method of data collection. VRE takes input from professionals and ethnographic openness as points of depature, which precludes a pre-fixed focus based on a scoping study. Now she became involved in activities she was not familiar with: systematic searches using well-selected searchterms in deliberatelychosen scientific databases, performing duplicate extractions from random samples, analyzing and reporting data on the basis of official guidelines for qualitative inductive content analysis. Such activities were performed with a close eye on assuring content validation, so as to build a sound and solid piece of research. The way this was done and the idiom in which it was discussed belonged to the paradigmatic tradition of midwifery science. Mesman, on the other hand, was brought up in a paradigm that uses “methodological reflexivity” (Lynch, 2000, p. 29) to sort out biases and predispositions. Although being open to learn something new each time she joined forces with researchers from another epistemic culture, this time mixed feelings emerged. “It can’t be true. . . .! She must be kidding!” These were the lines that popped up in my mind regularly during our scoping study. Especially during the moments when the PI insisted to go through all data once again—this time independently, so as to avoid selection bias. In a calm though decisive manner, she explained the steps we had to take to ensure validity. In this way, she assured us, we would get our work published in the medical maternity care journal we had in mind. I fully understood her point. Nevertheless, irritation and frustration dominated my affective landscape in moments like these. To me, the exercise of guaranteeing trustworthiness had come across as something that had taken over our initial quest for understanding what happens in moments of effective interactions between maternity care professionals. Moreover, I was supposed to perform many activities while I had doubts about their logic, because I did not subscribe to the tenets of the paradigm to which these activities belong. I felt resistance to these objectivity-ensuring activities, while at the same time I felt uncomfortable about my negative responses. They conflicted with the many moments of fun we also experienced. We were a great team and shared a great deal of humor. Taking a lighthearted approach featured as our common way of dealing with the challenges we encountered during the project.

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Mesman did not anticipate her feelings of frustration. As of the first day of their interdisciplinary collaboration, it was clear to her that she and the rest of the team matched very well on a personal level. The project did not only bring a lot of fun and laughter, but all team members also shared the drive and passion to do research, as well as a particular fascination for the people and practices involved. However, their different paradigmatic backgrounds became a source of frustration. Mesman’s perspective on how to do research differed substantially from that of the midwifery scientists. Because the study centered on a midwifery project, Mesman perfectly understood that she had to subordinate her concerns to the medical science paradigm in which midwifery science was embedded. After all, the project was theirs: it was their idea, the funding was their money, the field of application pertained to their expertise, and potentially resulting publications would be aimed at their journals. Although Mesman was grateful to them for having invited her to join them, her participation also came with unexpected affective costs: irritation and frustration, but also discomfort about her unspoken negative feelings while being part of such a great team. After a substantial period of working through ambivalence, Mesman realized that from an STS point of view, she was in a unique position to study the midwifery science paradigm ‘from within.’ While participating in the midwifery project, she could do an “epistemic ethnography” (Mesman, 2022). After all, studying ‘knowledge production in the wild’ belonged to the core business of her STS research profile. In seeing the midwifery project as an opportunity for epistemic ethnography, the meetings with midwifery scientists had a twofold aim: working on the project and doing epistemic fieldwork. Adopting a careful scrutiny approach, she analyzed the collaborative interactions between midwives and obstetricians, as well as her own collaboration with the colleagues from midwifery science. Gradually and increasingly, respect, rather than irritation, began to define her experience. Looking with new eyes at all the steps that were taken made her also aware of her colleagues’ enormous devotion to sound and solid research. In addition, being open about her epistemic study stimulated reflective discussions about styles of knowledge production in which mutual respect about paradigmatic diversity emerged. By tapping into her STS ways of thinking and acting, Mesman’s frustration turned into fascination. This positive affect prevented her from withdrawal by resorting to her own turf. Instead, she reached out to the midwifery scientists to juxtapose her perspectives with theirs. Looking at maternity care from different angles, they recognized its multiplicity, which resulted in an additional analytical layer in the content-related publication of the VRE project (Korstjens et al., 2021). Rather than surrendering to unsettling feelings, she in fact appreciated the knowledge production potential of ambivalence.

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Concluding Remarks The vignettes analyzed above highlight that disconcertment and ambivalence played productive roles in our collaborative engagement research. Their productive effects were contingent on our engagement research methods—STIR and VRE—and on the particularities of situated collaborative configurations. STIR involves probing questions, which can stimulate disconcerting experiences of difference between disciplinary standards and their practical application. The collaborative configuration in Mesman’s VRE study together with midwifery scientists fueled her sense of ambivalence. She felt torn between her ‘new’ attachment to the midwifery science team, which had emerged quickly on the basis of their shared passion for science, and her ‘old’ attachment to her STS identity and community. We do not provide an exhaustive list of affects that emerged throughout the projects analyzed here, but foreground those that stood out as resources for collaborative knowledge production. Future research might inquire into the relationship between methodological elements of collaborative engagement and the emergence of other kinds of affects. Frequently, for example, surprise is a feature of VRE, which stems from the unusual experience of watching oneself on video (Iedema et al., 2019). Developing sensitivity for affects and the ability to regulate them was achieved through “affective labor” (Myers, 2015, p. 49; Carroll, 2012). We consider affective labor as an essential, if oft-undervalued element of establishing, maintaining, and sorting affective attachments in interdisciplinary collaborations. Mesman engaged in the cognitive-affective labor of epistemic ethnography to dissipate ambivalence and develop mutual respect for different ways of doing research. Smolka worked with and through disconcertment to establish a reciprocal relationship of support and affection with the Silver Santé team. Her “collaborative disposition” (Conley & Fisher, 2019, p. 251) to affectively attend to her collaborators was a prerequisite for building rapport. In other words, the outcomes of her STIR study were contingent on her ‘affect-ability.’ Informed by Haraway’s (2016) notion of “response-ability” (p. 12), we use the term ‘affect-ability’ to denote openness to affective experiences and the ability to make them productive for generative critique. While an analysis of pre-existing affective dispositions goes beyond the scope of this chapter, we acknowledge that affect-ability is an important but underexamined element and outcome of affective labor. Affective labor and affect-ability helped us engage in different forms of careful engagement. We introduce careful engagement as a heuristic that is useful for analyzing the critical potential of situated care practices and the possible interrelated role of affect. Recognizing her disconcertment as an indicator of diverging conceptions of ethics, careful assimilation helped Smolka to stimulate reflexivity about alternative ethical systems. Careful scrutiny supported Mesman to move beyond feelings of ambivalence in her collaboration with midwifery scientists. Approaching her collaborators with the sensitivity of an epistemic ethnographer, Mesman recognized the potential of interdisciplinary collaboration to destabilize a hegemonic conception of maternity care by shedding light on its multiplicity. While our analysis foregrounds careful assimilation in STIR and emphasizes careful scrutiny in VRE

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for illustrative purposes, both forms of engagement can be found across collaborative engagement methods, as we have indicated elsewhere (Mesman, 2022; Smolka, 2022a). Moreover, other forms of careful engagement deserve further investigation. The argument presented in Smolka et al. (2020) suggests that careful confrontation in STIR helps transform disconcertment into a productive resource for destabilizing disciplinary conventions. Likewise, Hor et al. (2023) indicate that careful curation of workshop settings can express appreciation for and support learning of participants in reflexive sessions. The outcomes of such collaborative projects suggest that careful engagement pursues a “double vision of care” (Lindén & Lydahl, 2021, p. 8). A double vision of care combines two approaches within care studies—situated analyses of care practices (Mol et al., 2010) and a critical care perspective (Martin et al., 2015)—to emphasize how “situated and empirically close research can interrogate, complicate and/or unsettle the social, material, and political contexts of the practice of care under study” (Lindén & Lydahl, 2021, p. 8). Along these lines, the concept of careful engagement helps analyze how attending to affective dimensions of engaged research practices can productively unsettle the social and epistemic arrangements structuring these practices. Careful engagement also guides us in imagining how a situated and a critical vision of care bind together. As “it matters what ideas we use to think other ideas (with)” (Strathern, 1992, p. 10), it makes a difference whether we conceive of their relation as a ‘spiderweb entanglement’ (Corsín Jiménez, 2018) or a ‘patchwork seam’ (Law & Mol, 1995). We suggest that ‘affective glue’ makes the empirical analysis of local (care) practices in collaborative engagement projects stick together with generative critique. Our engagement research projects show that critique, which stems from intimate involvement with local practices under study and affective attachments between collaborators, generates reflexive engagement with (alternatives to) taken-for-granted concepts, practices, and ethics. Acknowledgments We are grateful to the Medit-Ageing research group from the Silver Santé Study and the midwifery scientists in Maastricht. Special thanks go to Irene Korstjes.

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Mareike Smolka is Assistant Professor in the Knowledge, Technology and Innovation chair group at Wageningen University & Research in the Netherlands and Research Fellow at the Human Technology Center of RWTH Aachen University in Germany. She has more than five years of experience in socio-technical integration research (STIR), a method that facilitates interdisciplinary collaboration across socio-technical divides. Her research interests cover Science & Technology Studies, Responsible Innovation, Technology Assessment, the sociology of emotions, and more recently, transition studies. In her current research and teaching activities, she develops and tests methods that facilitate inter- and transdisciplinary collaboration. Jessica Mesman holds a Chair in ‘Complexity and Epistemic Diversity’ at Maastricht University in the Netherlands. Her field of expertise is Science and Technology Studies with a focus on medical practices, in particular ICUs, Surgery, and Emergency. Her work on ‘exnovation’ is internationally recognised as progressive as the concept directs the attention to highlighting and harnessing the ecological strength of existing practices by combining innovation with scientific inquiry. Her current research focuses on ways to navigate complexity in healthcare. For her exnovative analysis, she uses video-reflexive ethnography (VRE), an interventionist and collaborative method. Besides this visual reframing, she also uses (non)modern frameworks not usually related to research on complexity in healthcare, as analytical strategy.

Chapter 14

Enactments of Evidence-Basing: Integrating Layers of Care Isabella Pistone

Introduction Underlying the move from the agnostic stance of actor network theory, towards the engagement with care in science and technology studies (STS), is the discomfort associated with being a distant observer, not able to respond to frictions encountered in the studied fields (Lindén & Lydahl, 2021). As Lopez-Gomez (2020) put it, shifting from an agnostic repertoire to a care repertoire involves ‘taking sides, participating, acting, making a choice, taking a position’ (2020, p. 10). In my own previous work as a nurse, I have been confronted with many of the different challenges of doing care work. So, in entering the scholarly world of STS, I was excited about the potential of STS research on ‘care in practice’ because this literature addresses important questions about what it means to care in everyday practices (Winance, 2010; Mol et al., 2010; Pols, 2008). The engagement around care is grounded in the feminist commitment of caring for ‘the neglected, the invisible, marginalized and maintenance’ (Jerak-Zuiderent, 2020, p. 191) to present ‘alternative enactments of care otherwise at risk of becoming invisible, eroded or less real’ (Lindén & Lydahl, 2021, p. 8). This implies a call for more accountable descriptions by using our ‘descriptive tools’ to pay careful attention to easily neglected aspects of care work (Lindén & Singleton, 2021, p. 428). My experience of the practical dimensions of doing care as a nurse also disposes me towards aspects of STS work that seek to transform scholarly descriptions into actionable improvements in care practices—in particular, intervention-oriented research in “making & doing” STS. STS insights about nonlinearity of knowledge development have inspired a curiosity to explore how STS knowledge can be

I. Pistone (✉) Department of Philosophy, Linguistics and Theory of Science, Gothenburg University, Gothenburg, Sweden e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_14

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expressed to generate knowledge travel between the field and studied practices by intervention-oriented research (Downey & Zuiderent-Jerak, 2021). Making & doing is thus the outcome of an increased scholarly interest in how to turn ‘STS lessons onto STS work’ (Downey & Zuiderent-Jerak, 2017, p. 223), using our STS sensibilities to act on frictions in the fields we engage in. Following these ideas, I have been participating in a research project in collaboration with a social care provider. We have been experimenting with “if and how” evidence-based practice (EBP) could become integrated with the care work already existing in the social care practices at the provider. EBP is often defined as the integration of clinical expertise, patient values and the best research evidence being applied to the decision-making process for everyday care (Sackett et al., 1996). However, EBP in social services has, far from its promise of increasing quality of care, been challenging to achieve. Social work scholars have argued that EBP’s focus on standardization risks impinging oppressively on professionals’ and clients’ knowledge (Witkin & Harrison, 2001; Johansson et al., 2015). Could insights from four decades of STS interest in the dynamics of standardization (Timmermans & Berg, 2003; Timmermans & Epstein, 2010; Zuiderent-Jerak, 2007; Lampland & Star, 2009; Jerak-Zuiderent, 2015) help us experiment with how to do evidencebasing differently? The idea of the research project considered in this chapter was to make use of these insights—to put STS lessons about EBP and standardization practices to work at two daily activities units. A starting point in the research project has, based on these STS insights, also been to move away from evidence-based practice (as noun) towards the more active form, evidence-basing (as verb), thereby acknowledging that attempting to base evidence in everyday care is a process of inquiry. A common concern with the increasing interest to engage by intervention is that researchers risk losing their descriptive power. Others worry that, through their interventions, researchers either risk losing their agnostic sensibilities and intervene with a pre-set agenda or that they perform consultants’ work and become a tool on behalf of influential actors in the field (Vikkelsø, 2007). Zuiderent-Jerak (2015) observes that the debates about engagement in STS have been dominated by a dual fear of, on the one hand, risking over-involvement and loss of epistemic distance and, on the other hand, fear of over-detachment and failure to address issues that really matter. As Zuiderent-Jerak (2016) points out: STS intervention should not be considered a strategic method to achieve predefined normative goals, but instead as a scholarly approach for generating novel insight. To prevent strategic interventions, it has been suggested that scholars could attend to ‘sorting attachments’; sorting being the ‘practical activity of figuring out how to engage’ and attachments stressing ‘that no such engagement is innocent’ (Bruun Jensen, 2007, pp. 239). A similar response to handling engagements to care is attending to ‘speculative commitments’ (Puig de la Bellacasa, 2017): commitment because it is ‘indeed attached to situated and positioned visions of what a livable and caring world would be’ and speculative ‘by not letting a situation or position [. . .] define in advance what is or what could be’ (ibid., 2017, p. 60). Jerak-Zuiderent shows that attending to the notion of speculative commitments can help us cultivate ‘how to care’ as an open question (2020, p. 196).

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Both ‘sorting attachments’ and ‘speculative commitments’ are thus notions that encourage us to engage by ‘non-strategic and still non-detached scholarly methods’ (Zuiderent-Jerak, 2016, p. 76). In this chapter, I combine the two scholarly veins ‘care in STS’ and ‘making & doing’ to contribute to the understanding of ‘careful engagement’ as a generative mode of knowledge production. Drawing on my experience of participating in the intervention-oriented research project about evidence-basing at a social care provider, the chapter focuses on ‘sorting attachments’ and ‘speculative commitments’ as affective labors involved in navigating how to care in intervention-oriented STS. The emerging literatures on care in STS and making & doing renegotiate established relationships between scholars and the practices we study. They put new focus on the scholar as a knower and her or his relations with the known (JerakZuiderent, 2020; Downey & Zuiderent-Jerak, 2021). Martin et al. (2015, p. 626) briefly try to capture this relationship by distinguishing between two layers of care: the first is that which we as STS scholars bring into the studied fields including reflexive dimensions of care. The second is that which circulates among the actors in the practices we encounter through our studies i.e., specific enactments of care in the field being studied. In this chap. I reflect on these relations by elaborating on the idea of two layers of care, showing how combining care with making & doing can result in situated integrations of these layers.

Introducing the Project The research project is a collaboration between a group of six researchers within STS, improvement science and evidence-basing, and a non-profit social care provider in Sweden. Some of the researchers have previous experience with making & doing STS in the evidence-basing field. I am a doctoral student on this project and my thesis is focused on examining knowledge production and use within evidencebasing in welfare services using resources from STS and theory of science. My background of having done systematic reviews (a central method in EBP) combined with a Masters degree in evidence-basing and theory of science disposed me to take part in this collaborative transdisciplinary research project exploring what evidencebasing is (and what it can become) at a social care provider. As implied by the title of the project ‘shaping rapid reviews in the nexus of evidence, stakeholder involvement and professional trust’ we are interested in the interactions and relations between standardized knowledge reviews, professional knowledge, and knowledge from clients in the local practice. From the perspective of the social care provider, one main interest is getting support in building structures for evidence-basing in their social care operations. Inspired by making & doing approaches (Downey & Zuiderent-Jerak, 2021) the focus in this project is in combining sensibilities from STS, evidence-basing, and the everyday care at the provider. The aim is to do knowledge reviews that summarise existing research and integrate them in existing structures for improvement work at

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Fig. 14.1 Illustration of the research process (simplified into three phases)

the social care units run by the provider. The project can be divided roughly into three main phases: (1) initial observations; (2) experimentation with doing knowledge reviews for improvement work at the provider; and (3) studying outcomes (Fig. 14.1). Throughout these three phases we engage in different kinds of reflexive sessions, workshops and working group meetings in which researchers and practitioners continuously meet to discuss the proceedings of the project and reflect on empirical material together.

Making & Doing Careful Evidence-Basing with a Social Care Provider In the following section I will provide empirical accounts of the three phases of the project and discuss issues concerning the relations between researcher and the studied field; what it means to be carefully engaged; and the role of affects in experimental engagements.

First Phase: The Move from Observer to Intervener The aim of the first phase of the research project is to empirically explore the current shapes of evidence-basing at the provider. Therefore, the project starts with a period of ethnographic observations and interviews at two daily activities units for people with intellectual disabilities. With a backpack filled with scholarly critique of EBP, I enter the units, ready to face the local care practices struggling with EBP: tinkering with standards (Lydahl, 2021; Mol et al., 2010), doing invisible (Star & Strauss, 1999) or narrative (Jerak-Zuiderent, 2015) care work in the background of rigorous EBP infrastructures. Contrary to my expectations, I did not find oppressive standards, top-down management-by-knowledge or dominating guidelines. I had, in fact, been faced with quite the opposite—no traces of EBP, and instead what seemed to be well-functioning practices driven by knowledge from professionals and clients.

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This insight had made me question the idea of experimentation in the research project and it is not without feelings of uneasiness that I attend its first collaborative workshop. Present at the workshop is the research group are staff from the quality department and managers at different levels at the social care provider. We have plans for a two-day workshop to discuss our initial empirical observations and to sketch out the next phase of the project: the move from ethnographic work towards our experimental intentions. In a conference room at the provider, we work through transcripts of interviews and field notes together. My uneasiness with trying to experiment with evidence-basing in some form in these practices is amplified by my research colleague Eva’s reflection: ‘There seems to be very little evidence-basing here and very little potential for evidence-basing. What is there to evidence-base? Maybe we need other concepts for quality assurance, but without just leaving it as it is?’

During the discussions that follow, I really begin to worry: If I experiment with evidence-basing in this practice, would it risk disturbing existing well-functioning practices? Up to this point, I had conducted ‘comfortable’ ethnographic work that, in this case, meant not accepting taken for granted images and hierarchies between practice and evidence-basing, and instead, approaching all activity with empirical openness. The observer role comprises a degree of comfortable distance which at this point certainly seems appealing. My uncertainty about if and how it even makes sense to disturb these practices with interventions makes me look for potential ways out of my experimental commitments! In contrast to my own uncertainty about evidence-basing in these practices, the staff and managers at the provider seem to be more excited. Björn, from the quality department, explains that they have put a lot of effort into strengthening professional knowledge and knowledge from clients with the help of another research project. He continues: ‘Evidencebasing is a missing piece for us in our quality work and something that we really think is important.’ At the risk of seeming excessively anxious, Björn’s remark set off yet another warning bell. “They seem to think that evidence-basing is needed?” I thought to myself, “Okay, this is never going to work.” I had recently ended another project where I had the unpleasant experience of being forced into someone else’s naïve knowledge agenda and I was not eager to repeat that mistake. Now I am concerned about whether this enthusiasm from the provider built on similar naïve expectations about evidence-basing. Was I to be highjacked into someone’s pre-set agenda again? However, as the workshop continues, I realize that my anxiety seems to be rather misplaced. Maria, an experienced social worker and manager gives her idea of what evidence-basing could become in their practices: ´ evidence-basing is just finding the external knowledge for what we are doing´. Björn continues: ´Evidence-basing is about getting support from research in local improvement work´. Through this discussion, it turns out that the staff have an unpretentious and nuanced way of relating to evidence-basing: They are not stuck in naïve imaginings of rigorous evidence-basing structures. They simply want to learn more about how to make use of research in their practices, and so do I. We both share the ambition of exploring the possibilities and limitations of evidence-basing as a resource for improvement. As the workshop heads towards its conclusion, we have begun to sketch out a possible experiment

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that builds on the most fundamental part of evidence-basing: that decisions should be based on the best available knowledge. External knowledge from research is in fact a neglected form of knowledge that does not constitute a natural part of decision-making1 in the observed practices. The project thus shifts focus away from experimenting with how to do evidence-basing in a way that ‘downplays’ evidence and strengthens local knowledge from professional and clients towards exploring ways to infuse external knowledge into the practices.

The process of moving from a descriptive observer position towards an active collaborative position incorporated (at least) three different fears: a general fear of putting myself in the unreliable position that intervention entails; a fear of having to collaborate with people that have unrealistic expectations of what evidence-basing has to offer; and a fear of becoming a vessel for someone else’s pre-set agenda. These fears are all connected, in one way or another, to my role as a scholar and the fact that I am supposed to move from an observer role that had been rather comfortable, towards intervention-oriented activity. Moving from observation to intervention means departure from well-established relations between (STS-) researchers and the studied field. While a traditional researcher role entails the classical distinction between phases of observation, analytical distance and descriptive accounts, intervention by collaboration means that ‘one acts from within to make a difference’ (Mesman, 2017 p. 281) implying normative action together with the studied field. This generates affects that drive me to keep asking speculatively committed questions such as: is evidence-basing an ambition to strive for in these kinds of practices? Who would we care for by doing interventions in evidencebasing? What could the potential risks be for everyday practices and where am I as an STS-scholar in all of this? These fears and worries provoke a continuous navigation by ‘sorting attachments’ within the two layers of care. In this sorting, the observations made at the two units played an important role. Starting from an idea that caring for these units would necessitate protecting them from “dominant” evidence, analyzing empirical material collaboratively with the staff made me rethink what caring for these units could mean. Together we are able to formulate a shared idea of what careful evidence-basing could imply in their practices. The layers of care are in dynamic motion and at this point they align. The reflexive workshop served as a space for group speculation and worked as a resource for ensuring that I avoid the pitfalls of intervention—neither imposing my own idea of care on this practice nor unreflectively accepting the provider’s version of care. In the workshop it became obvious that exploring ways to infuse external knowledge into the practices is something that the staff really care for, and I choose to trust them.

1

This constituted a form of tweaked epistemic exclusion (see Pistone et al., 2022), where the expectations would normally be that knowledge from practitioners and clients are not being sufficiently heard in relation to evidence-basing.

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Second Phase: Experimenting with Evidence-Basing The next step in the research project is an intensive period of conducting knowledge reviews that could fit within improvement projects at the units run by the provider. Our idea with the knowledge reviews is to design them in a way that could support improvement teams for developing their care practices without falling in the wellknown pitfalls of evidence-basing—such as, having a narrow view of what constitutes good knowledge (the focus on controlled studies, such as RCTs) (Wieringa et al., 2018) and top-down linear ideas of knowledge diffusion and standardization (Zuiderent-Jerak, 2007). Along with the three improvement leaders, Signe, Anna, and Maria, and my research colleagues Allan and Morten, I produce knowledge reviews for two improvement teams. I am working with Allan, Morten, Signe, Anna, and Maria. Together, we are trying to figure out how to do the knowledge reviews. The “knowledge from observing” the practices have given us insights into which kind of “knowledge from research” would be useful within the context of the practices. It also gives insights into how to ‘package’ the knowledge in a way that would encourage the practitioners to read and make use of the knowledge review. From my previous experience of conducting rigorous systematic research reviews with Swedish government agencies, I had learned how much methodological rigor according to the principles of EBP mattered to these agencies as they strived to become evidence-based. This current project is different and we are constantly aware of the tension between methodological rigor and practical relevance. Anna is concerned with how to get the staff to read the knowledge review at all: ‘It really has to be very brief and easy to understand. Many of these staff are not used to reading texts in their work at all’. Signe and Maria nod in agreement. While they don’t question the very idea of evidence-basing, they are concerned with how to get these written texts to be useful for the practices. I confirm their concerns by referring to a great amount of scholarly critique that resonates with what they are experiencing. These insights make us search for knowledge from research in forms beyond the traditional research texts. This includes synthesis of research from national agencies, webpages that summarize important knowledge for social care practice, educational courses, and podcasts. We gather the sources we find as links in a document (Fig 14.2, image on the left side) and give a brief summary of each knowledge source so the improvement teams can decide if they are worth exploring further (Fig. 14.2, image on the right side). During this work, I raise concerns about these very simplified knowledge reviews to Allan and Morten: ‘I feel like we are doing a ‘dirty’ version of evidence-basing by producing these overly simplified knowledge reviews. Can we really call this evidence-basing?’ However, after showing a draft of a knowledge review to a staff member in one of the improvement teams, she responded: ‘For someone who is not used to reading evidence, it will be a lot to read’. Hearing this from the staff makes me step deeper into our situated version of evidencebasing.

Fig. 14.2 Knowledge review for one of the improvement teams

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The navigation within the layers of care continues as an affective labor throughout the process of producing the evidence. In this phase, the tension created by my preconceived ideas of what constitutes evidence needed to be navigated. I was caught between the assumption that evidence must be conducted according to the rigorous principles of traditional EBP research synthesis, and the needs I find in these local care practices which are quite opposed to those rigorous principles. Doing a systematic review of research according to the principles of EBP was not an option. They take several months, and even years, to conduct, and the result is reported in a format that is too comprehensive and difficult to assess for staff without academic training. Instead, the knowledge reviews must be easy and rapid to conduct because the improvement leaders are the ones who will be left doing them when the research project is over. Being responsive to the care circulating at the provider meant, in this case, abandoning some of the core principles in EBP such as the formalized method of systematic reviews (Higgins & Thomas, 2022) and the hierarchy of evidence (Goldenberg, 2006). During this process I worry: How brief and ‘dirty’ can we make these knowledge reviews? There are three aspects connected to this discomfort: (1) I do not want the potential ‘good’ in evidence-basing to get lost through excessive simplification; (2) I see a risk that abandoning the rigorous EBP methods and techniques for synthesizing research could risk giving the staff an easy way out of evidence-basing; and (3) My role in the research project is to provide expertise in the intersection of evidence-basing and STS, this means that I must be aware that the version of evidence-basing enacted in the project could risk exposing the quality department to some hidden traps in relation to accountability. Sorting of attachments is part of this constant navigation in the two layers of care, and it involves trying to calculate how different possible enactments of evidence-basing could lead to different versions of care and weighing the pros and cons of each of these possible versions. The process of conducting the knowledge reviews was a collective “not knowing” what evidence-basing could be in this context. The improvement leaders contributed their idea of what evidence-basing could become in their everyday practices. Their knowledge and experiences of how to get external knowledge to travel into everyday practices are crucial in this process. These sensibilities are integrated with my reflexive scholarly care, putting STS sensibilities such as counterintuitive reasoning (Mesman & Carroll, 2021), knowledge of the sociology of standardization and approaches in making & doing STS work. Altogether, this encouraged us to include a variety of knowledge sources that go beyond the narrow idea of what counts as evidence in evidence-basing and do brief and simple knowledge reviews that we hoped could be integrated in the improvement projects. In the knowledge reviews, there are no distinguishable layers of care—they are integrated in our joint effort in making & doing evidence-basing. This integration of the layers of care is made possible because we do not have any strong conflicting values of what constitute good care in this case. However, the version of care enacted in the knowledge reviews is in constant tension with my experience and knowledge of the theories and methods in evidence-basing.

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Third Phase: Learning about Evidence-Basing Having produced two knowledge reviews for the respective teams, my role now shifts from being at the center of the action to stepping back to observe what happens in the nexus where evidence meets the knowledge of professionals and clients in the improvement projects. I observe the improvement teams in their different activities, and I get the uncomfortable feeling that the improvement teams are not using the knowledge reviews despite the hard work that the improvement leaders put into supporting the teams with this. I simply do not find any nexus to observe. I had been attending the improvement work meetings in the respective teams and while they did aim to use knowledge from the reviews, there was always something else that the teams needed to handle, issues in the improvement work more urgent than exploring the knowledge provided in the reviews. This is uncomfortable to observe because I know the substantial amount of time and effort that has been put into this endeavor and I would feel responsible for its potential failure. My fear now stems from being deeply involved with this practice on a relational level. I care for the staff at the provider, and I share their ambitions. I am attending a reflexive session. Attending the reflexive session is a group of ten employees comprising of improvement leaders, unit managers, district managers and staff from the quality department. The goal of the session is to discuss the process of producing the knowledge reviews and how the improvement teams have approached them in their projects. Signe, one of the improvement leaders, is enthusiastic about the integration of knowledge reviews in the improvement projects: ‘the knowledge reviews are a way to structure the use of external knowledge in a more systematic manner’. She continues: ‘many of the improvement teams that I coach use external knowledge in their projects but not in an explicit and structured way’. The knowledge review, she argues, helps explicate these activities and thereby give evidence-basing a more concrete role in the improvement project. Signe’s reflections contradict my sense that the knowledge reviews have not been used. She is describing something that I had not been paying attention to. The others in the session nod in agreement with Signe’s reflections. Maria, from the quality department and previous manager for one of the participating units, takes over with an example from one of the teams interacting with the knowledge reviews: ‘It was nice to see how the knowledge review confirmed to them that they were on the right track. Things that they know through experience were confirmed by a rigorous report from the National Board of Health and Welfare’. I know the moment to which she refers. I too had reacted to the staff’s appreciation after reading the short summaries of the external knowledge, but at the time, I had not thought about it as an actual moment of evidence use. I recall how one of the teams had taken an educational course in communicative approaches referred to in the knowledge review. The lessons from this course came to permeate the whole improvement project. We discuss these different moments of knowledge use within the improvement projects. Lisa, at the quality department, asks if the knowledge reviews sometimes work like a trampoline that enhance the improvement projects, elevating them and pushing them higher, rather than just prescribing actions.

I am certainly intrigued by the reflections at the workshop that seem to incorporate a wider view of evidence use than generally acknowledged. Using evidence in welfare practices is often talked about as a means for preventing practitioners from making poor decisions, and thus preventing ineffective or suboptimal treatments. This had

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been imaged with the metaphor of a parachute in one paper critical of evidencebasing (Smith & Pell, 2003). Had I been thinking about evidence as working more as a parachute than a trampoline? Yet, did this kind of knowledge use count as evidence-basing? And, who decides what counts as such? During this reflexive collaboration, I realize that the staff see things that I don’t. This example shows how our roles and relations are not fixed according to preset ideas of researcher identity and the relations with the studied practice (Mesman, 2017). In this collaborate project, our roles have showed to be ambiguous and fluid as we multidirectionally transform (and are transformed by) each other. In this case, the staff brings in a reflexive layer of care, in this case the counterintuitive reasoning often thought of as something belonging to the STS scholar, and I am enacting a normative version of care that constitutes an unintended instrumental view of evidence use. Cultivating ‘how to care’ as an open question (Jerak-Zuiderent, 2020) meant being responsive to the staff’s views on the experiment and learning with these reflexive sensibilities already existing in the practice. In this case, it implied learning that ‘nexuses’ of evidence, professional trust and stakeholder involvement can be subtle and easily neglected if you don’t pay attention. Maybe the metaphors of trampoline and parachute can work as concepts to support articulation of different modes of evidence use to facilitate further learning about evidence-basing at the provider? Could this ‘STS sensibility in the wild’ (Downey & Zuiderent-Jerak, 2017, p. 228) also facilitate scholarly learning about subtle forms of knowledge use that do not fit into the ‘evidence—implementation—fixed’ models of EBP? The project continues with new questions and opportunities for multi-directional learning.

Conclusions: Affective Navigation when Integrating Layers of Care Throughout the empirical account, I made explicit my own feelings of discomfort and worries. This might seem to suggest, for some, that I was in a questionable working environment not appropriate for a doctoral student. To the contrary, I argue that these affects cannot and should not be counteracted since they play a necessary part in navigating how to generate care interventions. I chose the word “navigation” here to give the temporal aspect of this project the attention it deserves. As acknowledged by scholars in the field, ‘sorting attachments’ and ‘speculative commitments’ are approaches that allow STS scholars to be committed while reducing the risk that they start operating from a pre-set strategic agenda or that they become the vessel of someone else’s agenda. Providing care is an activity characterized by affective relations (Varfolomeeva, 2021) and Jerak-Zuiderent (2015) explores how scholars can make use of their own affects to develop careful accounts by turning to disconcerting moments during field work. Smolka et al. (2021) analyze the role of affective disturbances as part of productive engagements in interdisciplinary research projects. This chapter extends these ideas by giving attention to the

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affective labor involved in the reflexive navigation of how to care in interventionoriented research. In this case, fear and worries provoke a continuous attention to speculatively committed questions. These affects help navigate how to move from an observer role towards an active collaborator role and they are a key part in keeping ‘how to care’ an open question (Jerak-Zuiderent, 2020) while intervening throughout the project. The weight of speculatively committed questions such as: How to care? About what? And for whom? (Puig de la Bellacasa, 2017) increases when having to take personal responsibility for practically responding to them during experimentation. It makes these questions uncomfortable and stressful. In this project, it forces a rethinking of central concepts, communications, and commitments: First, it enables a rethinking of what constitutes evidence when evidence-basing is situated at a local social care provider. In this case it meant abandoning rigorous EBP methods and hierarchies of knowledges. Later, I learned about subtle forms of evidence uses which made me reconsider what counts as basing evidence in this practice. Second, this responsibility forces an experimentation with knowledge reviews as situated expressions of an integration of our scholarly care with the care existing in the everyday practices at the provider. Third, it allows my commitments to change from entering the project with a naïve belief that I should contribute some well-needed STS-sensibilities to a challenging task towards being deeply involved on a relational level, with joint commitments to a shared idea of care. This relationship and joint commitment are also what encouraged me to trust the provider and turned discomfort into confidence in the provider’s ability to avoid any hidden traps that the experiment might expose them to. Continuously being prepared to face your own ignorance necessitates a humility that is distressing and provokes fears. At the same time, it is a natural part of learning and engaging. As Puig de la Bellacasa states ‘care is a human trouble’ (2017, p. 2, emphasis added). What this chapter has shown is that affects such as discomfort and fears are involved in this trouble to care and that they can be turned into generative modes of knowledge production (Jerak-Zuiderent, 2015). The project was not just an exercise in different levels of anxiety. The distress and worries were in this case part of a creative and rewarding process. As rewarding, the combination of care and making & doing help me move from engaged descriptions to actionable contributions. Mesman (2017) shows how close collaboration and participation in the studied field implies multiple roles and responsibilities that result in dynamic positions which complicate the idea of the outsider/insider divide. These findings correspond to the insights arising from this project as well: the roles relating me as a researcher and the provider as study object are not fixed according to the outsider/insider ideal. Martin et al. (2015) point out that the lines between the two layers of care can be blurry. In this project, the separation into layers of care is further complicated by at least three aspects which result in an oscillation of the layers to the extent that they are to be thought of as fluid, shifting and at times integrated: (1) the design of the project enabled me, the staff, and the project to evolve. This happens as we learn together by continuously shifting between observations, experimentation, and reflexive sessions. I did not have the role of a clear outsider as researcher in this

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process, my role is to collaborate with the provider towards a shared goal. (2) When working together on the experiment with knowledge reviews in improvement projects, the reflexive dimension of care is de facto integrated with the enactments of care in practice. This provokes further novel enactments of care at the provider by which we learn together about evidence use as subtle trampolines. In line with this thinking, the knowledge reviews are materialized integrations of layers of care: a product of our joint sensibilities from learning together about evidence-basing. (3) In the ongoing reflexive sessions, we are mutually learning by making & doing evidence-basing. This kind of practical learning is dynamic in character and necessitates fluidity between the layers of care. To conclude, this chapter shows how making & doing projects could work as catalysts for care repertoires by positioning the researcher as a knower within the field of study and allowing her to respond to observed frictions by experimenting with how things can be different (Downey & Zuiderent-Jerak, 2021). Also, the intention has been to further the understanding of ‘careful engagements’ as a generative mode of knowledge production by drawing attention to the role of anxiety and discomfort as affective expressions of care. Being responsive to these affects cultivate reflexive navigation in interventionist research projects and prevent preset versions of care from becoming pervasive dominating layers. Caring by making & doing implies not operating from a privileged scholarly core, being prepared to meet your own ignorance with discomfort, integrating layers between scholarly care and care in practice, as well as having fun in and among the various anxiety attacks! Intervention-oriented STS, if pursued with care, can involve integrations of layers of care that can get our scholarly insight to matter for the practices we study, thus increasing the possibilities for STS to become ‘interesting enough for practices to care about’ (Jensen & Lauritsen, 2005, p. 72).

References Bruun Jensen, C. (2007). Sorting attachments: Usefulness of STS in healthcare practice and policy. Science as Culture, 16(3), 237–251. Downey, G. L., & Zuiderent-Jerak, T. (2021). Introduction: Activating STS through STS sensibilities. In G. L. Downey & T. Zuiderent-Jerak (Eds.), Making & doing: Activating STS through knowledge expression and travel (pp. 1–36). MIT Press. Downey, G. L., & Zuiderent-Jerak, T. (2017). Making and doing: Engagement and reflexive learning in STS. In U. Felt, R. Fouché, C. A. Miller, & L. Smith-Doerr (Eds.), The handbook of science and technology studies (4th ed., pp. 223–243). MIT Press. Goldenberg, M. (2006). Evidence and evidence-based medicine: Lessons from the philosophy of science. Social Science & Medicine, 62(11), 2621–2632. Higgins, J., & Thomas, J. (2022). Cochrane handbook for systematic reviews of interventions Version 6.3. Available from: http://handbook.cochrane.org Jensen, C., & Lauritsen, P. (2005). Qualitative research as partial connection: Bypassing the powerknowledge nexus. Qualitative Research, 5(1), 59–77. Jerak-Zuiderent, S. (2015). Keeping open by re-imagining laughter and fear. The Sociological Review, 63(4), 897–921.

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Jerak-Zuiderent, S. (2020). How to care for our accounts? In A. Blok, I. Farías, & C. Roberts (Eds.), The Routledge companion to actor-network theory (pp. 190–199). Routledge. Johansson, K., Denvall, V., & Vedung, E. (2015). After the NPM wave. Evidence-based practice and the vanishing client. Scandinavian Journal of Public Administration, 19(2), 69–88. Lampland, M., & Star, S. L. (Eds.). (2009). Standards and their stories: How to quantify, classifying, and formalizing practices shape everyday life. Cornell University Press. Lindén, L., & Lydahl, D. (2021). Care in STS. Nordic Journal of Science and Technology Studies, 9(1), 3–12. Lindén, L., & Singleton, V. (2021). Unsettling descriptions: Attending to the potential of things that threaten to undermine care. Qualitative Research, 21(3), 426–441. Lopez-Gomez, D. (2020). What if ANT wouldn’t pursue agnosticism but care? In A. Blok, I. Farías, & C. Roberts (Eds.), The Routledge companion to actor-network theory (pp. 4–13). Routledge. Lydahl, D. (2021). Standard tools for non-standard care: The values and scripts of a person-centered assessment protocol. Health, 25(1), 103–120. Martin, A., Myers, N., & Viseu, A. (2015). The politics of care in technoscience. Sociological Studies of Science, 45(5), 625–641. Mesman, J. (2017). Disturbing observations as a basis for collaborative Research. Science as Culture, 16(3), 281–295. Mesman, J., & Carroll, K. (2021). The art of staying with making & doing: Exnovating videoreflexive ethnography. In G. L. Downey & T. Zuiderent-Jerak (Eds.), Making & doing: Activating STS through knowledge expression and travel (pp. 155–178). MIT Press. Mol, A., Moser, I., & Pols, J. (2010). Care in practice, on tinkering in clinics, homes and farms. Transcript Verlag. Pistone, I., Lidström, A., Bohlin, I., Schneider, T., Zuiderent-Jerak, T., & Sager, M. (2022). Evidence-based practice and management-by-knowledge of disability care: Rigid constraint or fluid support? Evidence & Policy, 18(4), 651–669. https://doi.org/10.1332/ 174426421X16390538025881 Pols, J. (2008). Which empirical research, whose ethics? Articulating ideals in long-term mental health care. In G. Widdershowen, J. McMillan, T. Hope, & L. van der Scheer (Eds.), Empirical ethics in psychiatry (pp. 55–68). Oxford University Press. Puig de la Bellacasa, M. (2017). Matters of care speculative ethics in more than human worlds. University of Minneapolis Press. Sackett, D. L., Rosenberg, W. M. C., Gray, J. A. M., Haynes, R. B., & Richardson, W. S. (1996). Evidence based medicine: What it is and what it isn’t. BMJ, 312, 71–72. Smith, G., & Pell, J. (2003). Parachute use to prevent death and major trauma related to gravitational challenge: Systematic review of randomised controlled trials. BMJ, 327(7429), 1459–1461. Smolka, M., Fisher, E., & Hausstein, A. (2021). From affects to action: Choices in attending to disconcertment in interdisciplinary collaborations. Science, Technology & Human Values, 46(5), 1076–1103. Star, S. L., & Strauss, A. (1999). Layers of silence, arenas of voice: The ecology of visible and invisible work. Computer Supported Cooperative Work, 8, 9–30. Timmermans, S., & Berg, M. (2003). The gold standard: The challenge of evidence-based medicine. Temple University Press. Timmermans, S., & Epstein, S. (2010). A world of standards but not a standard world: Toward a sociology of standards and standardization. Annual Review of Sociology, 36(1), 69–89. Varfolomeeva, A. (2021). Destructive care. Nordic Journal of Science and Technology Studies, 9(1), 13–25. Vikkelsø, S. (2007). Description as intervention: Engagement and resistance in actor-network analyses. Science as Culture, 16(3), 297–309. Wieringa, S., Dreesens, D., Forland, F., Hulshof, C., Lukersmith, S., Macbeth, F., Shaw, B., van Vliet, A., & Zuiderent-Jerak, T. (2018). Different knowledge, different styles of reasoning: A challenge for guideline development. BMJ Evidence-Based Medicine, 23(3). https://doi.org/10. 1136/bmjebm-2017-110844

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Winance, M. (2010). Care and disability. Practices of experimenting, tinkering with, and arranging people and technical aids. In A. Mol, I. Moser, & J. Pols (Eds.), Care in practice. On tinkering in clinics, homes and farms (pp. 93–118). Transcript Verlag. Witkin, S. L., & Harrison, W. D. (2001). Whose evidence and for what purpose? Social Work, 46 (4), 293–296. Zuiderent-Jerak, T. (2007). Preventing implementation: Exploring interventions with standardization in healthcare. Science as Culture: Unpacking ‘Intervention’ in Science and Technology Studies, 16(3), 311–329. Zuiderent-Jerak, T. (2015). Situated intervention: Sociological experiments in healthcare. The MIT Press. Zuiderent-Jerak, T. (2016). If intervention is method, what are we learning? Engaging Science, Technology, and Society, 2, 73–82.

Isabella Pistone is a doctoral student in theory of science at the University of Gothenburg. Her research interests include evidence-basing and quality improvement in welfare areas. Together with a research group of several doctoral students and senior researchers, she combines the production of evidence in the form of systematic reviews with epistemological analyses of evidence-based practices in health care, social work, and education. Currently, she is involved in a research project that explores the potential shapes of evidence-basing combined with improvement work within a disability care practice at a social care provider in Sweden. Drawing on a large body of sociological research on evidence-basing and care practices she is experimenting with new forms of STS engagement in evidence-basing.

Chapter 15

Caring for the Bureaucracy Ask Greve Johansen

Introduction STS research has long been engaged in different forms intervention in practice. An interest in exploring different forms of intervening, and how research and producing accounts, in itself, could be regarded as intervention has gained wide support (Callon, 1981; Sismondo, 2007; Vikkelsø, 2007; Zuiderent-Jerak, 2015). Both in terms of heritages from pragmatism and in terms of engagements with lay expertise and indigenous knowledges, a core STS tenet has been crafting accounts that amplify alternative or overlooked accounts of how things and knowledges are assembled and how politics coalesce around issues (Asdal, 2014; Law, 2017; Marres, 2007). In many of these cases, STS studies have highlighted alternatives to established knowledges and expertise. The knowledges and worlds produced within bureaucratic settings has, in this sense, often played the role of a ‘hegemonic’ backdrop against which alternative knowledges, attachments, and politics have been put to the fore. While STS studies have for long been engaged with studying politics, recent contributions have specifically engaged in studies of bureaucratic practice (Mangset & Asdal, 2019; Vadgaard, 2016). As demonstrated by Vadgaard, engaging with bureaucratic practice through the concept of care and its association to tinkering (Mol et al., 2010) is useful in revealing forms of bureaucratic engagement that deviates from the Weberian ideal bureaucracy (Vadgaard, 2016). Redescribing bureaucracy as messy and contingent makes it receptive to more careful scholarly descriptions and engagements. The notion of care has been mobilized both as research subject and as research method. Care has thus served as a locus through which overlooked aspects of actors’ engagement could be investigated. Likewise, discussions around care have asked researchers to reconsider their own engagement A. G. Johansen (✉) Aalborg University, Copenhagen, Denmark e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_15

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when initiating discussions on how to produce careful accounts (López-Gómez, 2020). Doing careful STS research in a political-bureaucratic setting thus means pursuing questions of how care shapes bureaucratic practice, but also, investigating how the researcher may care for the bureaucracy—and how intervention in bureaucratic practice is shaped by being careful. The present text seeks to address both these aspects of producing careful accounts. The text outlines three distinct troubles that arose from a three-year ethnographic engagement with a planning office in the Municipality of Copenhagen. By casting these three ethnographic situations as ‘troubles’ (cf. Eidenskog, 2021), I strive not to settle the situations but rather to keep thinking them as “unfinished configurations of places, times, matters, meanings” (Haraway, 2016a). For each trouble, I attempt a careful re-problematization—not to resolve tensions, but to suggest how the notion of care may enrich understandings of and descriptions resulting from embedded research in bureaucracies. A careful engagement, in this sense, may give pause and allow a more open-ended thinking about the matters at hand (Stengers, 2005), and in that sense constitute a form of usefulness that neither succumbs to or detaches from prevalent understandings of means and ends. The troubles were, (1) that the project description for my research promised that I would contribute with something useful, (2) that the planning practices I encountered was mostly blind to non-human city-dwellers, and (3) that planners’ mandate to work (only) towards politically agreed goals obscured the political nature of bureaucratic planning practice. Below I reconsider a messy situation through the vocabulary of care. The point of that is first, that this allows me and ostensibly others to make more sense of intimate entanglements of care in planning bureaucracies. Second, I try to make the point that being careful could mean allowing for a larger appreciation of both researchers’ and others’ vulnerabilities in their everyday tasks. I conceptualize this positioning as an embedded researcher as being a ‘useful idiot’.

Setting the Scene Recent STS-informed studies of planning have pointed to the notion of care as a potent resource for investigating the relation between what is considered relevant to planning and what is not (Eidenskog, 2021; Metzger, 2014, 2016; Yuille, 2021). The way that planners and other implicated parties care for ideas, critters, and spaces, has important implications for what is considered relevant to plan for, and thus how the politics of planning unfolds. Thus, caring differently for (and in) planning processes might draw othered and sometimes non-human actors into political processes and space (Metzger, 2014; see also Hinchliffe et al., 2005; Hinchliffe & Whatmore, 2006)—at least for a while (Eidenskog, 2021). However, caring also enacts a ‘cut’ necessarily emphasizing the presence of some things at the expense of others (Metzger, 2016; Yuille, 2021; cf. Barad, 2007; Callon, 1998). The attention to care in planning thus seeks to cultivate new political repertoires for planners and researchers alike, which focus on enhancing opportunities for ‘going on well

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together in difference’ (Joks & Law, 2017; quoted in Yuille, 2021)—highlighting how multiple matters of care and the frictions they give cause to may open up and reshape what is considered relevant. The setting of the three troubles I attend to here is field work I conducted in the Technical and Environmental Administration of the City of Copenhagen (TEA) from 2017 to 2020. While employed by and enrolled in my university, the bulk of the project’s funding was a project grant from the TEA. Thus, my access to the TEA offices came bundled both with a given project description, and a somewhat fuzzy expectation of usefulness. The project’s stated goal was “to support the development of non-economic valuation metrics” for liveability in planning and decision-making processes in the City of Copenhagen. City bureaucracies regularly produce documents that outline future visions of urban space. The work of producing and circulating such documents is often referred to as strategic urban planning. Their content can be thought of as imaginaries of desirable urban futures (Albrechts, 2016). Such imaginaries are entangled with valuation and devaluation of various urban forms and ways of living, and they problematize; articulating simultaneously specific problems, and the actions that will solve them, they render urban space as a territory in anticipation of government measures to be taken (Brighenti, 2018). In the City of Copenhagen’s recent past, some of these imaginaries have coalesced around the notion of liveability. This has been the case in many other cities around the globe, and especially in the past two decades, the word has been associated with ambitions in becoming a ‘global city’, linked to notions of urban space with a universal appeal. In my research (Johansen, 2021a), I investigated how liveability imaginaries were assembled in policy documents and how these documents were made tangible through the production of measures (Brighenti, 2018), i.e., operationalized instantiations of liveability in the forms of plans, policies, calculations and GIS data. My interest in pursuing this project thus exceeded assisting the TEA in solving their problem: developing non-economic valuation metrics for liveability. I had come to appreciate the empirically driven and pragmatic approach to politics developed in the Science and Technology Studies literature. Alongside the refusal of separating epistemic and political processes a priori (Sismondo, 2007) and the insistence on seeing order and power as (temporary) effects, established by the assembly of heterogeneous elements (Blok, 2013), what was important for this research was an indeterminacy of the location and form of politics, and an attention to the techniques that enable politics to take place. This attention, inspired among other by Andrew Barry (2001) is what Emilie Gomart and Maarten Hajer refer to as an appreciation of the meandering, searching, quality of contemporary political processes (Gomart & Hajer, 2003, p. 55). The object of the present text, however, is not to recount this research in detail, but rather, to examine how the notion of care may reorient, or re-problematize my relation to the field site/funding body/office. The difference between the project description and my research objective, and my sustained engagement with colleagues in the office in the municipality, gave rise to a certain unease throughout the project. This text performs what I would call a careful reworking of these relations. By this, I mean to reconstruct a reasonable way of being in the project,

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and of writing about the project through the notion of care as developed in feminist technoscience and STS. The notion of care does not solve the problems encountered above, but it offers a repertoire that highlights the ‘troubles’ encountered, offering new ways of engaging with the question of what is problematic and what is not (Callon, 1981).

Entering the Office The ‘Municipal Planning and Strategy’ team was located on the fifth floor of a repurposed warehouse in the Islands Brygge neighborhood, across the harbor from Copenhagen’s center and town hall. The team of public servants working there had varying educational and professional backgrounds but shared that they were all quite experienced. It was not only apparent that they relied on specialized knowledge relevant to their daily tasks, but also that they all seemed to have a well-developed sense of how to navigate the complex power dynamics of everyday bureaucratic life. They knew how to care for the various documents they wrote, edited, and circulated. The team was the anchor point for a three-year field work in the TEA. The municipality had approved the funding of a PhD project entitled “Valuation of Liveability—the Construction of a New Political Object” which I applied for and was granted. As I entered the TEA’s offices for the first time, I was carrying with me not only a problem and a project description, but also the invitation and expectation of taking part in daily activities of the team. I was given keys and access to IT infrastructure, and now, had to figure out how to make myself useful (Bruun Jensen, 2007). Over three years, I would alternate between spending time at the municipality and the university. As I began to settle in, the project framing would move to the background. My participation in TEA practice would become an apprenticeship amongst strategic urban planners. I would contribute to meetings and common discussions, discuss my colleagues’ work throughout the day, and when nothing else was going on, sit at my assigned desk. Here I would collect documents and read and write notes and emails. The notion of legitimate peripheral participation (Lave, 2011; Lave & Wenger, 1991) captures the terms of my participation nicely. While I was regarded as a colleague, I was not expected to deliver written output in the same fashion as my colleagues, being thus legitimately peripheral to daily activities in the office. In the role of a rookie of sort, (Dobeson, 2016) I was protected, allowed to experiment, and was not expected to possess the same skill and take the same responsibilities as my colleagues in the TEA (Pálsson, 1994). This role was well suited, not only for situated learning of strategic planners’ practices (Lave, 2011), but also for engaging with the abundance of documents circulated through various communication channels. While figuring out how to use the often-confidential materials and knowledge I would come across was a challenge, so was the increasing tension between ‘doing’ and ‘studying’ the construction of new (liveability) political objects.

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First Trouble: Staying Useful when the Concepts Are Problematic As I engaged with a wider literature on liveability in urban policy, I began to question whether I would be comfortable promoting liveability tools in municipal practice. Copenhagen was pronounced ‘most liveable city’ in the annual ‘Quality of life Survey’ published in the Monocle magazine in 2008, 2013 and 2014 (Brûlé, 2008; Bloomfield & Booth, 2013; Bloomfield, 2014). Figuring in the top of lists like this and comparable rankings by the Economist Intelligence Unit and Mercer’s, inscribed Copenhagen in a pantheon of successful ‘global’ cities. This testified to the radical transformation of the city and its administration from a state of depopulation and severe financial challenges in the 1980s. More than a testament to perceived successful urban transformation, rankings accounting for liveability and ‘quality of life’ articulate liveability as a ‘new political object’. In addition to such accounts of liveability, several scholars have engaged with the concept in a more critical sense. Without a doubt, ‘liveability’ is often implicated in a form of urban governance directed at attracting perceived resourceful citizens and companies to partake in the city’s economic activities. As shown by Kornberger and Carter (2010), the establishment of different forms of calculative practices generates competition between cities, in turn, necessitating strategic action by cities. In this sense, it becomes an effort to attract the ‘right’ people and companies, and to shape the urban environment in ways that make it attractive to these specific people and companies. This selectiveness is connected to processes of gentrification, enacting planning and policies that favor high-income residents and thus displace low-income groups (Lees & Demeritt, 1998; Ley, 1990; McArthur & Robin, 2019; McCann, 2007). In Copenhagen’s municipal policy, as well as in literature committed to measuring and promoting liveability, however, liveability is implicitly or explicitly promoted as a universal quality of (urban) space (City of Copenhagen, 2015; Giap et al., 2014; Gough, 2015; Leach et al., 2016). There, liveability measures presuppose universally applicable general principles of good urban life that can be met by specific government interventions. The politics of how to live well in the city is thus addressed quite differently from the different academic positions engaging with liveability. While perhaps never fully explicated, my own understanding of my role was that I would bring some kind of academic knowledge in dialogue with the practice I engaged with. The two salient ways of thinking about liveability, which on their own terms seemed irreconcilable, urged me to consider whose side I was on. Telling stories of liveability would put me in roles either as a useful idiot or a critical sociologist: Either I could adopt the notion of liveability as a universal ‘good’ and cast myself as a promoter of the liveability agenda—or I could join the effort to unveil and critique liveability discourse a driver of gentrification. I had encountered a version of the problem described by Jonathan Metzger: “[upholding] a critical vigilance against being ‘useful’ at any cost, but without succumbing to an arrogant

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denigration or unqualified condemnation of all the hard and passionate work constantly undertaken by planning practitioners . . .” (Metzger, 2014, p. 1001). The former option was unattractive because it seemed plausible to me that liveability was implicated in an urban politics that promoted particular versions of good urban life as universal, thus rendering a host of other urban life forms invisible. I was more than a little wary of the treating something ostensibly universal as exactly that (Ong, 2011; Ong & Collier, 2005). The latter option, on the other hand, seemed equally unattractive, as unfolding a critique around the notion of neoliberalism would leave little to say for descriptions of strategic urban planning practice. Mobilizing a ‘social explanation’ of Copenhagen’s liveability politics would divert attention from my colleagues’ work, and would betray a core tenet of ANT, with which I was affectively entangled (Latour, 2004, 2005). My intuitive response was shaped by my fondness for STS what I tried to do though my manner of caring was to suggest that the way of working with liveability might be otherwise. However, the two most apparent researcher roles, the critical sociologist and the useful idiot, did not help me go forward with this endeavor.

Re-Problematizing: Becoming a Useful Idiot Sticking to the description of the politics of a thoroughly non-innocent concept, as suggested by Latour (2005), would entail a careful consideration of how to re-present ‘liveability’ as to avoid what I considered pitfalls of the renditions of liveability put to use I had encountered so far. However, adding a symmetrical description in the tradition of ANT would still put me in a position as an ‘appendix’ to the action (see also Callon, 1981). This would seemingly entail an early withdrawal from my field site, which would be incompatible with the intimacy of my apprenticeship, and the approved project description which I felt was owed some loyalty. Symmetrical descriptions have a certain reluctancy to commit to a ‘take’ on a given situation before the analysis is completed (Latour, 2005). In the specific setting of strategic urban planning, at that point in time and space, this approach was misunderstood as a lack of care. A TEA colleague with a background in environmental activism scolded me for being sophomoric, implying that not having a clear agenda to push through bureaucratic channels was a waste of taxpayer’s money. A merely academical interest would not cut it. I was, then, in dire need of a position which could honor the dual needs of retaining the role of apprentice, while making my own political commitments clear. I realized that the ANT I knew (and cared for) would stumble in this. The term ‘useful idiot’ has been used, as I have above, to denote “a naïve or credulous person who can be manipulated or exploited to advance a cause or political agenda” (“Useful Idiot”, n.d.). This bears some resemblance to the discussion of usefulness put forth by Casper Bruun Jensen (2007). Bruun Jensen proposes to think about usefulness of STS in terms of sorting attachments: “Sorting attachments, thus, refers to the processes through which researchers, by affinity or

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implication, become tethered to institutional and political ‘machines’, which may be quite different from their own but nevertheless shape their research questions, methods and conclusions in multiple ways” (Bruun Jensen, 2007, p. 239). Such sorting attachments may, Bruun Jensen suggests, leave the contribution of STS accounts somewhat homeless in arrangements over which the researcher has limited control. Bruun Jensen’s redefined notion of usefulness comes with both an imperative to understand STS engagement as transformational, and an emphasis on the cost of intervention. Instead of stopping when we become partially complicit, the attention to usefulness prompts us to reflexively engage with how we partake in transforming the situations we end up in as researchers, and at what cost. Not only usefulness but also idiocy has been the subject of STS scholarship. Isabelle Stengers suggests, borrowing from Gilles Deleuze, to deploy the figure of the idiot as a mode of inquiry in STS research. The idiot is “the one who always slows the others down, who resists the consensual way in which the situation is presented and in which emergencies mobilize thought or action” (Stengers, 2005, p. 994). The idiot performatively questions what is known in a given situation. The idiot researcher is thus simultaneously attentive to prevalent logics of his or her object of study as well as attuned to how these logics might surprise us if looked upon through other ways of knowing (Danholt, 2021). The ‘useful idiot’ position that I try to carve out here, is an idiot who, with Stengers, is insisting on questioning the taken-for-granted propositions in a given situation but is doing so at a cost. The cost of intervention, here, is related to implicit or explicit expectations of usefulness that take shape as written agreements on research contributions as well as the facework required to uphold daily interaction (Goffman, 1955). The utility of such a position is in “finding ways to generate ‘risky situations’ that open up its participants to surprising insights and unpredicted collective becomings by staging events that offer a potential for learning to be affected in new ways.” (Metzger, 2016, p. 591). Below, I expand on what a useful idiot might do in situations of strategic planning for urban nature.

Second Trouble: Liveability for Nonhumans Liveability was becoming an increasingly problematic concept for me—and so was the part of the project description that said I would facilitate the development of new liveability metrics. Looking through various municipal documents, I had not found something akin to a definition of liveability. In the kinds of (document) practices revolving around liveability, interpretive flexibility, so it seemed, was a useful if not crucial characteristic. At least, the opposite was not the case. There was no trace of the need for unified definitions of the concept; rather the concept ‘liveability’ figured as a flexible placeholder for when texts might need to reference a notion of a good life in the city. What was salient however was a strong commitment to the idea that urban space should be for everybody. This was related to notions of inclusivity and multifunctionality. By arguing that (all) urban space should be for everyone, it was

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implying that the Municipality should promote versions of urban space with universal appeal. This version of urban politics did not allow for the notion that particular non-universal interests might have legitimate claims to good urban life. This applied to humans, as well as to non-humans. I decided to intervene in the TEA’s use of the liveability concept by engaging in conversations on the administration and planning of urban nature. The sceptic attitude towards anthropocentrism developed in STS and feminist technoscience offers the vocabulary for challenging the othering implied in liveability policies; by introducing notions of non-human agency, I hoped to destabilize the taken-forgranted idea of liveability as universal (Hinchliffe et al., 2005; Hinchliffe & Whatmore, 2006; Metzger, 2014). The idea was to talk about liveabilities in the plural, that is, to reposition the liveability agenda as a concern for the many, a generalized and never unproblematic concern for a multiplicity of life forms. This approach resonates with some mobilizations of the notion of care. Maria Puig de la Bellacasa refers to care as “productive doings that support liveable relationalities” (de la Bellacasa, 2011, p. 93, my emphasis). In my reading, the concept of liveability is here juxtaposed to Anthropo- or other -cenes, highlighting the continued engagement in /emphasis on exploring new forms of living on a planet under threat of mass extinction and climate change etc. (Haraway, 2016b; also, Metzger, 2016). The livability deployed in feminist technoscience, thus, has a vastly different scope and equally different peace terms than the version we find in liveability rankings of cities. On one hand, then, the notion of liveability as a concern for assembling responses to the Anthropocene problem, outlines a radical difference to the troubled notion of liveability as it appears in rankings of cities. On the other hand, the troubled realities of liveability in practice serves as a warning that ostensibly ‘good’ concepts may come with, or become entangled in, troublesome relations if left unattended. I approached this by ‘noticing’ instances where urban nature would strike back in our ongoing interactions and meetings, by preparing a talk on the topic for a monthly employee meeting with around 60–70 attendees, and by arranging a workshop intervention with participants from across the organization (see Johansen & Lindegaard, 2020). The part of the intervention I want to elaborate here, however, is perhaps the most (usefully) idiotic, because it points to the cost (and fragility) of intervening. It thus serves to elaborate on the argument developed in the previous section. What I did was to consider what liveability would look like from the perspective of a tree. In particular, a tree of the species Robinia Pseudoacacia, or black locust tree, located on a disused parking lot next to the railway yards south of Copenhagen Central station, which I would pass on my commute to the university. I had interviewed a civil servant, Viggo, who for many years had worked at a tree nursery supplying the city with trees suitable for growth in urban environments. Now he worked as a planner, but had specific tasks related to governing the planting and protection of trees on municipal land and in conjunction with urban redevelopment. A tree policy had been approved in 2016 to ensure both better protection of existing trees in the urban environment and that more trees would be planted in new development projects. Viggo had told me that change in regulation of pesticide use on state owned land in the 1990’s had meant that railway tracts were dotted with self-

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grown trees of about 25 years of age, which were interesting planning objects because the new policy and political emphasis on tree conservation had changed the status of these unintended trees to potentially ‘conservation-worthy’. Their existence not being the result of human intentionality, such trees challenged normal assumptions in urban forestry, which clearly delimited both human agency and plants etc. for the sake of humans from nature existing on its own account. A new local plan was being worked out for the disused parking lot to accommodate the construction of an office building for a non-profit housing association, and any trees on the plot in question were understandably in danger of being felled but were also being catalogued and assessed to evaluate whether their continued growth could be ensured by negotiation with the developer.

Re-Problematizing: Idiotic Accounts of Trees My idiotic response to this discovery was as follows: I had located a tree on the plot in question, and now, attempted to write prose that would convey how this tree would feel about the whole situation. To be frank, the text I produced felt tacky to me, and I am too vain to reproduce it here. Part of this was due to how the text inevitably anthropomorphized the tree when speaking on its behalf. The dubious quality of the text aside, the whole endeavor served well in instilling my investigation of liveability in urban planning practice with a fair amount of idiocy. In a more practical sense, the exercise, and the stories about it I told to colleagues at the TEA, also made an idiot out of me. By attaching myself to this idiotic idea, I developed a repertoire to account for my presence in the TEA. As the apprentice/ idiot, I would not only participate from a legitimately peripheral position, but also, as the resident idiot, slow things down, demanding (with limited success) that neither I nor they would “consider ourselves authorized to believe we possess the meaning of what we know”. (Stengers, 2005, p. 995). Sometime later the tacky prose, now set to resemble a poem of sorts, was in a moment of poor judgment, submitted to the committee organizing the annual Christmas party revue, for inclusion in the program of musical and theatrical sketches reflecting on the past year’s political scandals and the self-contradictory nature of municipal work. Luckily, the committee found other contributions than mine to have greater entertainment value and it was not included. The point I am trying to make here at my own expense is that idiocy in this case assisted me in reframing the role vis-à-vis the proposed project, that is, to re-problematize the supposed usefulness of the research project. In a sense, becoming a useful idiot, if only momentarily, helped settle the uneasiness stemming from the fact that I was present in the office to do other things. Situating my ethnographic presence as idiotic, possibly in both senses of the word used here furthermore revealed to my surroundings a certain vulnerability related to whether the research I was doing was any good. This vulnerability is related to a careful engagement with bureaucratic practice, as it pertains not only to my own doubts about engaging with bureaucratic practice in a productive manner, but just as much to the relationship

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between my civil servant colleagues and the things they cared for through their work. The trouble pertaining to caring for the bureaucracy, then, is the third re-problematization that I want to bring to attention, as I will expand below.

Third Trouble: Opaque Politics As outlined above, the project setup lent itself to working from the perspective of the planner, constructing descriptions of the perspective of the planner, or some combination hereof. The “beings with whom [I] became entangled” (López-Gómez, 2020, p. 9) over the course of my research were the persons acting on behalf of a local instantiation of the state, i.e., bureaucrats. Outside of academic discussions, bureaucracy is rarely a word used with positive connotations. In many STS accounts, as well as in geography and anthropology, actors acting as or on behalf of the state often take the role of antagonists, and accounts give attention to how lay, user, indigenous, or otherwise othered knowledges are overheard, marginalized or trivialized by ‘official’ knowledge claims. By engaging with a municipally funded project, with an expectation of some kind of usefulness, I was allied to actors who, to many were ‘hard to like’ (see Papazu, 2022). Sharing workspace, having lunch, and continuously discussing our work over my three-year field work, however, meant developing mutual respect, and I came to understand the care that my colleagues put in their work. While not necessarily given, this affective entanglement became a defining part of the field work. I saw the project as an opportunity to explore and describe bureaucratic work on its own right, to deploy the logics and considerations and attachments that were prevalent from the inside—as contributions that describe how nonbureaucrats are subjected to the bureaucracy seem to be more plentiful than taking the bureaucrats’ perspective. Thus, the contribution I envisioned was crafting accounts that were taking the complexity of the role of the civil servant seriously. Or, put otherwise, I wished to pursue bureaucratic work by means of a careful engagement with strategic urban planning practice. This positioning of my research was far from innocent. As pointed out by Michelle Murphy, the notion of care is implicated in complex (power) relationships. The ‘care’ for urban space and its inhabitants that my TEA colleagues embodied cannot be seen isolated as good. Rather the articulations of value which specific planning objects engendered, could be understood as “conjured, assigned and circulate in affective economies.” (Murphy, 2015, p. 723). Just as procedural work of elected politicians can be said to act as a counterweight to a growing power of bureaucratic institutions (Asdal & Hobæk, 2020), colleagues in some cases uttered the concern that bureaucratic work should be shielded from a too direct influence of city council members’ and citizens’ faddish ideas. For instance, politicians might decide to pursue overly ambitious goals like planting 100.000 trees (planting them is not necessarily expensive, finding locations and their subsequent maintenance is), or citizen involvement processes might delay important construction processes without

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adding valuable perspectives to the planning process. Such sentiments, running counter to commonly shared democratic beliefs, illustrate how caring for a thing implies prioritizing it over others. The account I ended up giving made the argument that bureaucratic practice and that of representative democracy mutually equip each other to partake in political processes (Johansen, 2021b). What might be added, drawing on Asdal and Hobæk, is that this mutual relation both restricts and enables political action.

Re-Problematizing: Caring for the Bureaucracy This unsettling (anti-democratic) sentiment was always said in a careful manner and spoken to me as an insider to bureaucratic practice. My colleagues were acutely aware that processes where bureaucracy worked without a direct political mandate should be made sufficiently opaque to obscure this situation. Their work was thus characterized by a certain vulnerability; their motives and legitimacy might be called into question if actors unappreciative of their anticipation and preparation of politics would know how to pose the right questions. As such, strategic urban planning might be said to entail undervalued care practices (Papazu, 2022)—that is, a mode of caring that is deemed illegitimate in its immediate surrounding and thus preemptively disqualified by the caring actors themselves. Michelle Murphy and other’s call for critical care relies on Haraway’s notion of staying with the trouble. This implies learning to be truly present, “as mortal critters entwined in myriad unfinished configurations of places, times, matters, meanings.”(Haraway, 2016a, p. 1) In this account of a troubled research engagement, I recount how, through the notion of care, the troubles of researching planning practice while being funded by, situated in, and expected to be useful to the planning office can be foregrounded and insisted upon. Mobilizing the notion of care transforms or re-problematizes the issues I encountered and made new meaningful conceptions of research practice visible. While informed by feminist technoscience and STS contributions (e.g., Haraway, 1988; Zuiderent-Jerak, 2015) my research at the time was not directly engaging with the notion of care. As such, the text above is a reconsideration of a field work practice, a situated intervention; exploring how the notion of being carefully engaged might help me make sense of some of the enduring troubles that characterized the field work. Pointing to the troubles of staying useful, insisting on liveability for nonhumans, and bureaucrats’ undervalued care, I have illustrated how I, and others, are carefully engaged in bureaucratic practice. These careful engagements entail complex power dynamics. They are always dangerous, if not necessarily bad (Foucault, 1983). Trouble one is about the possibility, or likelihood, that the core concept, liveability, laid out in the project description, was enacting partial and selective politics while claiming to be universal. Staying with the trouble initially revealed two modes of engaging as researcher, either as a useful idiot or as a critical sociologist. Trouble two is the result of trouble one. Being a critical sociologist seemed to violate the

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terms of access to the TEA, and more importantly, to be less likely to make interesting accounts of the practice to which I had gained access through the project. Being a useful idiot, in the first sense of the term, was both possible and likely to be welcomed, but not the kind of research I was hoping to do. In this text I have opted instead to reconsider what being a useful idiot might mean, drawing on Bruun Jensens’ discussion of usefulness and Stenger’s proposal of being idiotic to “resist the consensual way in which the situation is presented.” (Stengers, 2005, p. 994). These mental gymnastics allow me to make sense of the kind of role I settled in, as illustrated by an idiotic attempt to speak on behalf of urban trees to the civil servants engaged in enacting the city’s tree policy. The third kind of trouble then results from the unease attached to how bureaucratic work is commonly valued. As part of public administration, the planning office ultimately exerts power by territorializing, and governing the territory so constituted to the best of its ability. In Daniel LópezGómez’ consideration of taking up a care repertoire for ANT, he highlights how care allows the researcher better means of attuning to the violence entailed in translation processes (López-Gómez, 2020). In addition, he points at the need for “a repertoire to re-attune [. . .] attachments so as to generate new situated sensitivities that do care about the becoming of the beings with whom we have become entangled. However, as argued by Michelle Murphy (2015), practices of caring may entail their own violence. Attending to care in this case both reveals how urban policy and planning may promote universal notions of good living in urban space at the expense of forms of life invisible to the planner, but just as much how planners work may be undervalued by STS research that often explicitly, or not, values the perspective of lay people and processes of public deliberation.

Conclusion The salvaged position of a ‘useful idiot’ emphasizes the cost of intervention and the fragility entailed by sticking to slowing things down in conversation with your field. The ‘useful idiot’ speaks neither with nor against the field they are embedded in but insists on being useful while mobilizing alien concepts. This produces messy and troubled accounts and may fail to produce desired effects. Such idiocy, however, is a manner of extending care to practices which may be ‘hard to like’. This extension of care—revealing the troubles of embedded research by acting idiotically/usefully may—as was the case here—result in a reciprocally careful engagement, in which new positionalities for ‘going on well together in difference’ emerge. The poetic voice of the black locust tree was not included in the municipal office’s annual Christmas revue. But other troubled interventions followed, which addressed the otherings of a universalist liveability concept by attending to morethan-human life. Extending care and being cared for as embedded researcher, this suggests, is not only a matter of acting professionally. Acting idiotically may sustain the attention of the field you intervene in, and thus end up being useful.

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McArthur, J., & Robin, E. (2019). Victims of their own (definition of) success: Urban discourse and expert knowledge production in the Liveable City. Urban Studies, 56(9), 1711–1728. https:// doi.org/10.1177/0042098018804759 McCann, E. (2007). Inequality and politics in the Creative City-region: Questions of livability and state strategy. International Journal of Urban and Regional Research, 31(1), 188–196. https:// doi.org/10.1111/j.1468-2427.2007.00713.x Metzger, J. (2014). Spatial planning and/as caring for more-than-human place. Environment and Planning A: Economy and Space, 46(5), 1001–1011. https://doi.org/10.1068/a140086c Metzger, J. (2016). Cultivating torment. City, 20(4), 581–601. https://doi.org/10.1080/13604813. 2016.1193997 Mol, A., Moser, I., & Pols, J. (2010). Care: Putting practice into theory. In A. Mol, I. Moser, & J. Pols (Eds.), Care in practice: On tinkering in clinics, homes and farms (1st ed.). Transcript Verlag. http://www.transcript-verlag.de/ts1447/ts1447_1.pdf Murphy, M. (2015). Unsettling care: Troubling transnational itineraries of care in feminist health practices. Social Studies of Science, 45(5), 717–737. https://doi.org/10.1177/ 0306312715589136 Ong, A. (2011). Worlding cities, or the art of being global. In A. Roy & A. Ong (Eds.), Worlding cities: Asian experiments and the art of being global. Wiley-Blackwell. https://doi.org/10.1002/ 9781444346800 Ong, A., & Collier, S. J. (2005). Global assemblages, anthropological problems. In A. Ong & S. J. Collier (Eds.), Global assemblages: Technology, politics, and ethics as anthropological problems (pp. 3–21). Blackwell Publishing Ltd. Pálsson, G. (1994). Inshore Fishermen: Cultural Dimensions of a Maritime Occupation. Enskilment at Sea. Man, 29(4), 901–927. https://doi.org/10.1007/978-94-017-1892-9_10 Papazu, I. (2022). The dark side of care? Wayward participants in Samsø’s renewable energy transition. In I. Papazu & A. Birkbak (Eds.), Democratic situations. Mattering Press. Sismondo, S. (2007). Science and technology studies and an engaged program. In E. J. Hackett, O. Amsterdamska, & M. Lynch (Eds.), Handbook of science and technology studies (3rd ed.). MIT Press. http://site.ebrary.com/lib/alltitles/docDetail.action?docID=10194163 Stengers, I. (2005). The cosmopolitical proposal. In B. Latour & P. Weibel (Eds.), Making things public: Atmospheres of democracy (pp. 994–1003). MIT Press; ZKM/Center for Art and Media in Karlsruhe. Useful idiot. (n.d.). In Merriam-Webster. Retrieved May 10, 2022, from https://www.merriamwebster.com/dictionary/useful+idiot Vadgaard, A. K. (2016). The election machine. Generating Danish Democracy.. http://www.dasts. dk/?page_id=29 Vikkelsø, S. (2007). Description as intervention: Engagement and resistance in actor-network analyses. Science as Culture, 16(3), 297–309. https://doi.org/10.1080/09505430701568701 Yuille, A. (2021). Contradictory cares in community-led planning. Nordic Journal of Science and Technology Studies, 39–52, 39–52. https://doi.org/10.5324/njsts.v9i1.3527 Zuiderent-Jerak, T. (2015). Situated intervention: Sociological experiment in health care. The MIT Press.

Ask Greve Johansen is a post-doctoral researcher at the Department of Planning at Aalborg University Copenhagen. His research is concerned with how nature is valued and mobilized in policy, focusing on the planning bureaucracy and the material-semiotic work in public offices. His doctoral thesis investigated how liveability was operationalized in Copenhagen’s Technical and Environmental Agency; currently he is exploring how low-carbon energy technology is promoted and problematized in the Danish Energy Agency.

Part IV

Engaging the Body

Chapter 16

A Carefully Engaged Researcher’s Body Katia Dupret and Jo Krøjer

Introduction Work practices are highly relational and bound to socio-material engagements: For the summer holiday season, we take on substitutes at the slaughterhouse, college students who are such shrimps. They always pretend to be really badass and so, we rough them up a bit. We smear their headphones in ink that just sticks. You can’t wash it off. That’s just kind of a tradition with us. They do laugh a bit about it. I don’t know what they think, but they can’t do anything about it, really. I’ve even tried it myself, to get ink smeared on from the headphones. It’s uncomfortable. You get a circle of ink around your ear. It doesn’t come off. (Unskilled, male worker at a Danish slaughterhouse).

As qualitative work-life researchers, we develop field work and analytical methodologies to make visible this complexity of work-life matters like the one cited above. Only this way we can create knowledge of peoples’ work-life which fully acknowledge the multifaceted nature of relations and problems. Qualitative researchers have already been stressing the risk of oversimplifying research methods (KoroLjungberg and Mazzei (2012); McCoy, 2012). Law asserts, “If the world is complex and messy, then at least some of the time we’re going to have to give up on simplicities” (2004, p. 2). To us, the efforts to avoid simplicity in empirical and analytical work constitutes a careful engagement of the researcher that involves their socio-materially extended bodies. We develop ‘the Phantom’ as a new vocabulary that explain the complexity and components of research that includes and respects the messy weave of what goes on in the field. The vocabulary of the Phantom extends to the analytical phase and show how researchers employ embodied careful engagement that ensures complexity also in the analytical work.

K. Dupret (✉) · J. Krøjer Roskilde University, Roskilde, Denmark e-mail: [email protected]; [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_16

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This chapter examines three important phases of empirical, qualitative work-life research: (1) Preparation of the researcher for field work on the work-life of employees in their workplaces, (2) Engaging with actors in workplaces, and (3) Doing analysis of work-life. We propose a new methodological vocabulary for these phases. The chapter outline is: First, we introduce the Phantom; our concept and new vocabulary to make visible how the work-life researcher’s body is entangled with different devices and thereby can engage carefully with the field in different phases of the research process. Second, we elaborate our notion of care, and inspired by Puig de la Bellacasa (2017) we describe care as a socio-material bodily engagement of the researcher with ethical and affective affiliations. Thirdly, we argue that this socio-material engagement of the body should hold a normative awareness to include work-life relations and experiences that are often silenced. In our vocabulary, this comprises the concept of heterogenic listening (Dupret, 2010; Dupret & Krøjer, 2011). We exemplify this through an empirical example of field work in a Danish slaughterhouse (all examples are from Krøjer, 2003). Fourth, we investigate the place and space of the researchers’ body in the analytical phase. We show how the researcher may re-engage carefully with the field during analysis by observing the bodily experience of and from the field. To understand this phase in a careful research process, we coin the concept of Phantom pain. Phantom pain signifies the bodily recollections of the researchers’ careful sensing and experiencing the field. Finally, we conclude the chapter by raising awareness of the importance of sociomaterial bodily engagement of researchers as a prerequisite to conduct careful qualitative work-life research.

Fig. 16.1 The comic strip illustrates three phases in qualitative, empirical research and how the researcher as the Phantom engages carefully with her body and enhancing devises in fieldwork and analysis. (Illustration: Sofie Lind Mesterton ©)

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The Phantom: An Assembly with the Researcher’s Body To promote a new vocabulary for a methodology of careful engagement in all phases of qualitative, empirical work-life research, we employ the comic book hero of the Phantom. The figure was created in 1936 by writer and cartoonist Lee Falk. The Phantom is a figure that is human but acts like a superhero in a search for justice. The comic book lore explains how the Phantom came into being: A ship fell prey to a pirate attack. The only survivor was Christopher, who was washed up onto a Bengali beach and found by locals, who nursed him. He later found a dead body on the same beach and recognized it as the pirate who killed his father. He took the skull and swore an oath upon it to fight cruelty and injustice (Raja, 2009). The Phantom is a figure that travels, just like a work-life researcher who travels from the university to workplaces, for instance the slaughterhouse in this article, where skilled and unskilled workers transform pigs into a variety of butchered products; hams, tenderloin, pork chops—as well as residual products like blood, snouts, guts. The researcher travels into this world not as a worker and not as a guest, but as a visitor willing to engage with all these actors and processes. We use the Phantom figure to illustrate the traits of a carefully engaged researcher. Unlike other comic strip heroes, the Phantom does not possess any superpowers, but has become an expert in representing the case of the locals (tribes) and in mastering different devices in his (sometimes her) devotion to fighting cruelty and injustice. To us, the Phantom’s mastery of devices equals the way a researcher extends her body with different devices to enhance its senses and ability of engagement, and to enable this researcher body to move impressions from one place to another. The Phantom is the specific assembly of a researcher’s body with its limps, senses, organs, and all the non-human actors utilized to enhance the engagement with the field. These non-human actors are microphones, recording devices, pens, observation guides, notebooks etc. The Phantom-figure concept highlights the multiple and scarcely visible efforts and professional practices performed by field working researchers to produce scientific knowledge that holds rich accounts of diverse actors. Also, the analogy displays that empirical researchers are not engaging with the field only with their bodies (and minds). Contrary, researchers use a battery of different non-human actors to facilitate and enhance the engagement. Researchers engage as an assembly (Latour, 2003) of their body and assisting devices, and the character of engagement depends on which specific devices are available. When the researcher assesses which devices/other actors should assist her in a fieldwork, she becomes the Phantom; a figure translated from a human body into a different kind of body with enhanced senses and abilities to engage carefully.

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Care in Work-Life Research The Phantom is inspired by Puig de la Bellacasa’s (2017) argument that engaging with care requires a “speculative commitment to neglected things” (p. 57). This approach to care in work-life research embeds a strong affective and ethical dimension. It implies that rather than focusing on stabilizing matters of fact in our scientific knowledge production, our methodological and analytical approach should allow the thinking and representation of empirical matters to include trouble, worry, and care. Care to Puig de la Bellacasa (2017) means: “an affective state, a material vital doing, and an ethico-political obligation” (p. 42). To this we add the specification of care as ways of how the researcher body is socio-materially attached and committed when engaging with/in the field of research. Advancing the socio-material engagement of the body to be the core of conducting careful research implies to understand the researchers’ body as a socio-material extension with tools for research. The Phantom’s socio-material bodily engagement is about sensing and creating relationships with all kinds of actors in the workplaces we explore. This careful engagement requires that normative stands are challenged so that diverse actors’ voices can be involved in the creation of scientific knowledge. Thus, central to our approach to care in work-life research is a re-negotiation of the researcher’s engagement with the field before, during, and after field work. The Phantom suggests how researchers extend their bodies and make themselves attuned and available for many and diversified actors during empirical and analytical work. These phases are considered part of an ongoing negotiation process rather than a stable and temporal linear matter (Dupret, 2010; Dupret & Krøjer, 2011). The ethics involved are that ‘Careful engagement’ makes the researchers’ methodologies and analysis responsible to relations and experiences otherwise silenced in work-life research to avoid a “narrowly defined scientism” (Lather, 2006, p. 785). Careful engagement seeks to avoid predictions and habituated epistemological and methodological assumptions that limit the types of knowledge produced (Lather, 2006; McCoy, 2012; Pink, 2009). With this approach to care, we are in the realm of responsible research (Dupret et al. 2022; Gianni et al. 2019) where care holds ethical and affective dimension by paying attention to our responsibility as researchers. Later on we elaborate how the embodied work in the methodological and analytical phase of research enables researchers to critically attend to potential exclusions, violence, and marginalization (Lindén, 2016; Giraud, 2019; Lindén & Singleton, 2020).

The Body Latour and Davies inspire us to theorize how the careful engagement of the Phantom in the field is material and affective. To Latour (2004) and Davies (2000), bodies are ‘co-extensive with’ their surroundings. To Latour, the way we engage with the world

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is always entangled with non-human devises in particular practices. To Davies, knowing about the body should avoid essentialism and predetermination by “disrupting my taken-for-granted and clichéd ways of knowing my own body (. . .)” (Davies, 2000, p. 19). She proposes body/landscape relations as a concept of a body and its surroundings. The researcher’s body—like all bodies—is shaped and marked by the landscapes full of actors it is situated in. This process produces an emotional knowledge of ourselves as bodies (Davies, 2000). Thus, Davies’ reminds us that emotions are always present in a careful engagement, and emotions hold information about the workplaces we engage with. Just as this female unskilled worker express when explaining the meaning of shoes in her work life: A special kind of ergonomic shoes has been given to the male line-managers. But my two women colleagues at the line can’t have such shoes, even though they are having knee and back troubles. Oh no. When it’s a woman, then they don’t think it’s necessary (Krøjer, 2003, author’s translation).

Latour (2007) stresses that the body as assembly means a body which becomes affected by the socio-material surroundings, but exactly how the body is affected cannot be predefined (Latour, 2003). Thus, Latour and Davies both sees the body as co-produced with the surrounding non-human actors and the geographic place the body finds itself in. Also, to both, the body is not a closed-off entity, but is radically open to its socio-material surroundings. Latour’s theorizing sustains our conceptualization of the ways these non-human actors enable specific impressions of the field in and on the Phantom, while Davies helps conceptualizing how impressions consist of the Phantom’s emotional and material experiences, and to acknowledge both as valuable, empirical data.

Heterogenic Listening and the Assistive Technologies of the Phantom Our elaboration of careful engagement means that neither the researcher nor the field alone create the empirical material. Instead, empirical material is a co-creation arising from the unforeseeable ways in which the Phantom and the field affect each other. We argue that it is not enough to acknowledge this in contemporary (postmodern) methodology; we also need to conceptualize the specific researcher’s awareness and positioning during fieldwork. We have argued elsewhere (Dupret & Krøjer, 2011; Dupret, 2010) to name this awareness heterogenic listening. Like other types of methodological and analytical ways of creating empirical material from the field, heterogenic listening is not a neutral activity, and we agree with Bruun Jensen (2007) and Vikkelsø (2007) that the researcher is not innocent, and that the engagement with the field has performative effects. However, with the concepts of heterogenic listening and the Phantom we argue that a careful engagement is done through affective an embodied hearing (not only listening in a cognitive way) to greater variety of socio-material practices and experiences that have difficulties in

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being heard. The researcher attaches to different institutional logics and ‘machines’ (Bruun Jensen, 2007) through a particular bodily and emotional engagement. Hence, heterogenic listening suggests that the researcher body is the core of conducting empirical field work, because it is the body which enables the researcher to make careful choices in the research. Thus, heterogenic listening is one of the Phantom’s special skills. It is not a superpower, but something that any skilful researcher can learn. When the Phantom and field are interconnected, this implies an active effort on the part of the researcher to become affected. Learning to become affected, mean [s] ‘effectuated’, moved, put into motion by other entities, human or non-humans” (Latour, 2004, p. 205, original highlight). In the fieldwork phase, the Phantom attunes her sensing and affecting attention. Her tape recorder, field notes, videos, still pictures, her observations of smells, sounds, rhythms, emotions, etc. shape and enables this engagement. To do so, the ideology of cleanliness—that methods should be kept clean to secure a research product that is pure (Law, 2003, p. 2)—is abandoned. That allows for sensing and engaging with many and diverse actors in the field. Thus, the Phantom may adequately engage in a careful way, like in this example of an empirical trip: Before visiting the slaughterhouse, she talks to a male and a female worker, both unskilled, who work there. They tell her that male workers do all the butchering, cutting, and handling of pigs’ corpses. While she is at the slaughterhouse, she notices a female worker who is shovelling a substance onto a small container in a corner of the industrial hall. It’s a dirty place, not like the rest of the hall around the conveyor belt. Wet pigs’ bristles are stuck on the female workers clothes, the smell of it hangs in the air. The impression stays with the researcher, and she asks about this worker in the next interview with a slaughterhouse worker. She explains that this female worker is an exemption; ‘She is only the second woman who wants to work in there, in The Black End. There’s a lot of dirt and blood and it smells a lot when you clean the brushes, and the bristles must be shovelled up. But she likes it.’ (Krøjer, field notes; and female, unskilled worker).

If empirical research accounts do not include perspectives from all kinds of relevant actors—human or non-human—it is not to be seen as careful, but rather as reductionist and potentially unethical as it marginalizes or silences some of the actors in the field. This implies that an important dimension of our conceptualization of care involves a matter of doing. “Understanding caring as something we do extends a vision of care as an ethically and politically charged practice.” (Puig de la Bellacasa, 2017, p. 90) as we can only do bodily sensuous and emotional engagement. We cannot merely theorize it. Heterogenic listening offers the field the possibility of resisting research methodologies and questions that we otherwise would force upon it (Dupret & Krøjer, 2011). Heterogenic listening is a mode of engaging which is negotiated with the field and refrain from applying predefined categories of observation; it implies that is impossible for the researchers to know in advance exactly what relations in the field will be important and relevant to investigate. “focusing on equality, common values, circles of chairs (. . .), it is not because at the outset I have found these actors important but because in various ways I have been told it is so by the actors themselves. This is what I will be calling the heterogenic listening.” (Dupret, 2010, p. 30).

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The way researchers’ bodies are put into motion by the actors in the field is the reason why the researcher needs a diverse awareness. Heterogenic listening does not mean following a single direction. However, it is not undirected. In a care approach it is ethically and affectively informed. Engaging carefully as the Phantom involves a field engagement using radically open and enhanced senses. At the same time, the Phantom does not work exclusively to create new knowledge, but also to create knowledge that is aimed at taking care of the research subjects and objects, and to remain responsible for their becomings in a way that can challenge hegemonic practices such as gendered ones.

Affected by the Slaughterhouse In the following, we show how the Phantom use heterogenic listening to include the messiness of everyday (work) life in the empirical material. In this example of worklife field work (Krøjer, 2003), the Phantom enters the field with a research question directing her empirical interest, when different actors in the field hint that even this open research question may be reductionist: She is there to seek explanations as to why union representatives at industrial workplaces do not seem interested in gender equality. She does not initiate the field work by selecting a set of actors whom she defines as relevant according to predefined criteria. Instead, she ventures into the landscape of industrial work-life. She brings her notebook and pen and meets with union representatives at a trade union training course on gender and work-life. The initial negotiations with the field are affected by the fact that the union representatives do not seem to have any particular interest in sharing too much information on gendered inequalities with her, but they are keen to talk about their jobs and workplaces. First negotiations happen by using notebooks and synchronisation of calendars where she makes arrangements to visit their workplaces, the first of which is a large, industrial slaughterhouse. She arrives along with the group of union representatives at the slaughterhouse, and a male union representative who works there takes them into this landscape. It is a loud place, with all kinds of steel and mechanical technologies moving in all directions; it is still noisy even when they wear ear plugs. The floor is wet and slick with blood; it is red and slippery and the slaughterhouse union representative signals to them to be careful not to slip and fall. The Phantom researcher walks cautiously, watching out for the countless slaughtered pigs that move past her, close enough to bump into her. They hang from hooks of steel on chains running in tracks on the ceiling. She steps aside and right into another dead pig sliding by. It is heavy, but their collision makes it swing. Back at the trade union course, she turns on her tape recorder and interviews the union representative from the slaughterhouse. She is affected by the blood soiling the floor of the slaughterhouse, and the mess from cutting up the pigs, but remains with her initial research question as she asks how he views his workplace from the perspective of a gendered division of labour. He does not know about that, he says, but he tells her about how much he used to like the end of a workday, when all his colleagues had a shower in the slaughterhouse showering facilities. They used to talk and have fun. Since the new punch-out machine came, no one takes a shower anymore, they just hurry up to punch out and go home.

This example shows the important point that heterogenic listening does not mean that the Phantom shifts her awareness from one a priori given part of the field to

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another part of the field that the she has become affected by through human-nonhuman relations in the field. The use of heterogenic listening is a way of letting the field direct the research away from predefined places to many possibly unforeseen places. In the example of fieldwork above, the total empirical material included stories from a variety of places, relations, experiences, and actors focusing on gendered in/equality in modern, industrial work-life. The need of physical strength to handle hanging, swaying pigs corpses on steel hooks, to move in the rhythm of the movement to avoid being pushed over, feeling and smelling blood on the floor, the impossibility of having a conversation at a normal tone, the shower ending the work day. These many actors directed the researcher’s attention towards puzzling and unforeseen aspects of gendered work-life. The fact that the union representative answered that he did not know about gendered division of labour is a hint to the researcher that her use of vocabulary was disconnected with his landscape and that of the slaughterhouse. And that she needs to engage more carefully and do heterogenic listening. This way she learns that her research question needs to be readdressed. Careful engagement in this respect is not about pleasant feelings. On the contrary. It happens through continuous (hard) negotiation with the field. Her body gets affected by emotional expressions and descriptions of practices of what is nice/bad about this workplace, mysterious sounds and smells, the workings of large and old mechanical technologies, and stories of what it takes to work with them. When she looks for political engagement in questions of gendered in/equality, the union representative’s account of the showers, the blood, and the punch-out machine affects her so she listens to gendered work-life at the slaughterhouse in a way that she could not have imagined prior to her embodied and affective engagement in the field. Heterogenic listening does not only change the content of empirical research. It also alters the quality of it. In this case, the content changes from male and female industrial workers’ political views and political experiences with gender in/equality at the workplace, to their complex and partly inexplicable sense of inclusion in a workplace community and arrived at some point at a deep feeling of loneliness reinforced by the loudness, corpses, and punch-out machine. The empirical work changed from predefined observations and tape-recorded interviews to a way of engaging where the Phantom researcher journeyed into the slaughterhouse with heterogenic listening competences. This example shows how heterogenic listening is a method that implies negotiating and engaging in the field in a complex manner and requires the researcher to apply her professional devises and get affected in ways that guide her to adjust her approach. One of the most important consequences of a careful engagement is that relations between the researcher/s and the field influence the possibilities of analysis and knowledge production (Krøjer, 2006). After heterogenic listening to the field, the Phantom has a messy load of stuff from the field (or as Law (2004) puts it: “noise”. This messy load is a result of researcher/field interrelations and what they made accessible to the researcher.

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The Journey of the Phantom into the Analytical Landscape We understand the analytical process as a re-actualization of the careful engagement in the field. Empirical field researchers are familiar with this transition when the researcher body—the Phantom—is sitting back in the office (or perhaps at home) in front of the computer to translate the sensations and registrations of the field to text. Our conceptualization of careful engaged research addresses this: What happens with/in the researcher’s body that allows the researcher to translate empirical material into academic text? Richardson (1997) has pointed out how relations between different human actors in the field can act as resources to let the researcher body create embodied texts bearing careful testimony to the lives of Others. Widening ‘Other’ to include a socio-material understanding, careful engagement changes our perceptions of ‘who’ and ‘what’ can be considered valid empirical material appropriate for analysis (Puig de la Bellacasa, 2017). It is a way to engage, to be affectively put into motion with the field that assembles as a matter of care, a concern that is affectively and ethically informed. It takes care to considers the sociomaterial subtleties of relations and everyday experiences in work-life while baring careful testimony of the lives of Others. This has an ethical dimension as these subtleties are often not considered in the production of scientific knowledge, even though this is an important dimension of responsibility in research (Dupret et al., 2022). Following Davies (2000), we think of the researcher’s body in the office as materially altered by field encounters. Thus, a careful analysis of the Phantom’s field material is not only a matter of finding semiotic patterns, or even of making a sensory recollection. Instead, we argue that a carefully engaged work-life analysis can only happen when the Phantom re-actualize socio-material engagements, including impressions that otherwise may be by predetermined analytical strategies. The Phantom’s sensations and understanding of the material when moving into the analytical phase cannot be separated from the Phantom’s assistive technologies: the field notes, recordings, pictures, etc. (Knorr-Cetina, 1999) nor from the journey of contacting the workplace, engaging with the socio-materiality of the workplace, and leaving it again. The Phantom has been put into motion by the engagements into the different socio-material empirical research phases. We propose to conceptualize the way this engagement informs the analytical process ‘phantom pain’.

Phantom Pain: Re-Actualization of Socio-Material Experience Phantom pain is the physiological definition of pain from a limb that no longer exists. In popular science, the pain derives from the severed nerve ends that were formerly connected to the limb. Even though the limb has been amputated (or otherwise lost), the brain still experiences pain from it. Merleau-Ponty (1962/ 1992) stresses that having a phantom limb is painful because the body recalls its

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possibilities of engagement with the world. In our examination of the analytical phase of empirical research, we use the analogy to explain how the field simultaneously is and is not present. The amputated limb represents the field, containing the resonances of the socio-material engagement of the researcher. And similarly, to amputees sensing the missing limb, the researcher can feel sensory and emotional impulses from the field even though it is now separated from the researcher’s body. This way, the analytical process is initiated by phantom pain and continuously supported by it. If we imagine the nerve ends that send impulses to the brain to be the socio-material empirical affectively impressions from the field, the socio-material body landscape of the researcher in this new phase help re-actualize the created field material using assistive technologies in the analytical phase: Reading through the created material with the help of software programs or highlighter pens in different colors, watching recorded observation videos on the computer, and reviewing similar research with the help of library search engines to explore patterns across research material. These activities create an articulation of being put into new affective motion that now resonates differently in the researcher’s body. Articulation is a way to understand how bodies and landscapes interact. It is a way to define how sensual impressions on the researcher’s body come to matter: “a subject only becomes interesting, deep, profound, worthwhile when it resonates with others, is effected, moved, put into motion by new entities whose differences are registered in new and unexpected ways.” (Latour, 2004, p. 210). This perspective stresses that the process of becoming a phantom body is not only a matter of interpretation or social construction; it is a socio-material matter. It is careful engagement in the analytical process. This re-actualization process implies a process of transforming the imprints into analytical choices that can be painful on a metaphorical (and sometimes emotional level) because new connections must be created. In this phase the systematic socio-material phantom pain engagement with the field material creates new knowledge that was not accessible in the time and space in which the field material was created. The phantom pain is a sensory, emotional, and material memory, but it is not a representation. Instead, we suggest it to be a translation of one experience into another experience.

Phantom Pain as a Driver of Analysis When the Phantom travels back to academia the analytical process begins. The Phantom sits down at her desk to carry out the next phase, where she must re-engage carefully with the workplace by using her fieldwork material. She listens to recordings, reads through field notes and looks at pictures. But this is not enough to be carefully re-engaged. She also needs to involve the ‘messy stuff’ of emotional sensations a that the Phantom carried with her out from the workplace. She needs this to sense the phantom pain; sensing the phantom pain of experiencing the moving pig bodies, the shiny hooks of steel in the ceiling, the floor covered with blood, the showers, and so on. When preparing the analysis, the researcher carefully re-engages

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with the sensations of being at the slaughterhouse and the staff showering facilities. Sitting back at her desk, the sensations of the extended body affected by the field have not disappeared: Her body still senses the slaughterhouse and how she found it repulsive; she still feels the urge to clean herself after bumping into pigs bodies and walking on the floor slippery with blood. The phantom pain of her presence in the slaughterhouse comprises all of this, and: The deafening noises, even with the earplugs filling her ears and the hearing protection earmuffs the workers wore, the sight of the union representative signaling instead of speaking and of the slaughterhouse workers cutting up meat quickly and silently at their places by the conveyer belt. The careful re-engagement of her body with this part of the workplace turns the phantom pain into affective recollections of the required strength and coordinated movement, the difficulty of verbal interaction due to the noise, the quiet effectiveness and orientation towards ‘getting the job done’. The phantom pain of the slaughterhouse engagement informs her reading of the union representative’s description of the new punch-out machine and the way it keeps the workers away from the shower facilities. When she reads further about the shower room and how the workers used to have a bath together, talking, laughing and shouting to each other before they left, she senses the satisfaction of being part of a community. The socio-material re-engagement in the analytical phase translates into phantom pain and moves the researcher to make particular, analytical choices. In this case, her phantom pain of standing in the empty, white and echoing shower room translates into emotions of longing, a yearning for connectedness and for informal social relations with colleagues. The careful engagement turns the researcher’s awareness away from the initial gender division of labor and towards loneliness. Our point is not that loneliness is represented in the analysis because it was part of the field; rather, loneliness is the result of the phantom pain in the analysis—not prior to it. We argue that this should be defined as care in the sense that the researcher engages in an affective state with a willingness to redefine ‘how to care’ (Puig de la Bellacasa, 2017) for unskilled workers experiences of gendered work. The researcher decides whether to translate the empirical material into one analysis rather than another based not solely the field work material and theoretical devices, but also based on her phantom pain. The phantom pain re-engagement informs the analysis in a socio-material affective manner, enabled by the Phantom’s journey in and out of the workplace. The phantom pain exists, but the origins of these sensations cannot be defined or traced back to an authentic origin (Krøjer & Hølge-Hazelton, 2008). It is like an authentic feeling of something that has never really existed: “La simulation de quelque chose qui n’a jamais réellement existé”1 (Baudrillard, 1981/1994). This way, phantom pain is not a direct representation of the field, but a careful re-actualization of the sociomateriality of the field into the socio-materiality of the analytical process.

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Conclusion The link between fieldwork and analysis in qualitative research is a connection that has not been extensively articulated (Nickelsen, 2018). What happens during this phase of the research process? And what vocabulary allows for reflections on engagement in empirical field work and analysis in a careful manner? That has been the theme of this chapter. We point to the obvious fact that the researcher’s body constitutes this link. This implies a reconceptualization of the engagements of the researcher’s body with the field. The prerequisite for conducting careful, empirical research is to allow the research question and assumptions to intermingle with and become challenged by the socio-material landscapes of the field. The qualitative researcher can do this by preparing carefully and transform herself into an assembly; The Phantom who performs a careful, ‘heterogenic listening’ to the field. This multisensory awareness makes the creation of empirical material unpredictable and complex. The Phantom travels with the sensory and material impressions on and in her body back to her desk to carefully re-actualize them in the analytical process. This re-actualization is done by sensing the phantom pain of the field. The Phantom uses the entwined networks to make qualified qualitative choices about how to translate her phantom pain into words and texts for the analysis. Importantly, heterogenic listening and careful re-engagement as empirical and analytical methods is not a ‘voicing’-strategy, where researchers empower marginalized people and groups by representation of their perspectives Lather (2000). Instead, becoming the Phantom and re-actualizing the engagement with the field through phantom pain should be seen as a necessary precondition for the qualitative work-life researcher, if she wishes to contribute to scientific knowledge production that seeks to avoid simplistic conclusions, and to be guided by human and non-human actors in her empirical and analytical choices. Other qualitative researchers offers important insights on how to conduct research of complexity, and point to the fact that these studies may turn out ‘too’ attached to the field of intervention (Bruun Jensen, 2007). The point is to be explicit about the attachments made between researcher and field—meaning being clear about the “cost of intervention” (ibid.), and to point to what works in the existing practices and attachments rather than creating new solutions. Naturally this is a tricky task, as caring for gendered work practices often will point to kill joy situations. Adding to Puig de la Bellacasa’s (2017) work on matters of care as doing, our approach to care avoid ‘violent’ analyses that reduce people in the field to something we can ‘know’ and explain to them. We propose to do careful research by not offering explanations of their actions and work-life and relationship to equality without involving significant actors who constitute them and their work-life. Puig de la Bellacasa (2017) states: “Generating care might mean counting in participants and issues that have not managed or are not likely to succeed, or even do not want to voice their concerns”. Including non-human actors is not about caring for them, rather it is about caring for gendered work practices. This means that voices other than humans’ can determine the researcher’s empirical and analytical decisions.

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Careful engagement is not a kind of ‘ethics by method’, that rids the researcher of constant concerns of how to conduct herself and relate to the field. On the contrary, it a way of keeping in mind that research is a powerful craft that requires the researcher to qualify her understanding of care in research. Applying heterogenic listening and Phantom pain is not only about increasing care through positive feelings and attachments, but also about increasing an awareness of the potential hegemony of gendered practices. Thus, inspired by Murphy’s (2015) idea of an ‘unsettling’ approach to care when embracing discomfort, critique, and non-innocence, we offer a view on careful engagement that is embracing kill joy feelings and unease through embodied attachments.

References Baudrillard, J. (1981). Simulacres et simulation. Editions Galilée. Puig de la Bellacasa, M. (2017). Matters of care–Speculative ethics in more than human worlds. Minnesota Press. Davies, B. (2000). (in)scribing body/landscape relations. Alta Mira Press. Bruun Jensen, C. (2007). Sorting attachments: Usefulness of STS in healthcare practice and policy. Science as Culture, 16(3), 237–251. https://doi.org/10.1080/09505430701568636 Dupret, K., Eschweiler, J., Umantseva, A., & Hyldkrog, R. V. B. (2022). Mapping innovation and societal engagement:–responsible research through a care ethics perspective. Roskilde Universitet. EU report grant nr.101035808. https://doi.org/10.13140/RG.2.2.31722.59845 Dupret, K., & Krøjer, J. (2011). Hvad der gør noget og hvilken etik det implicerer. Om uregerlighed, risikovillighed og langsommelighed, Nordiske udkast, 1, 71–85. Dupret, K. (2010). Innovating health care–a configurative case study in intangible, incoherent and multiple efforts. Århus University. Gianni, R., John, P., & Bernard, R. (2019). Responsible research and innovation: From concepts to practices (1st ed.). Routledge. https://doi.org/10.4324/9781315457291 Giraud, E. H. (2019). What comes after entanglement? Activism, anthropocentrism, and an ethics of exclusion. Duke University Press. Knorr-Cetina, K. (1999). Epistemic cultures : How the sciences make knowledge. Harvard University Press. Koro-Ljungberg, M., & Mazzei, L. A. (2012). Problematizing methodological simplicity in qualitative research: Editors' introduction. Qualitative Inquiry, 18(9), 728–731. Krøjer, J. (2003). Det mærkede sted. Køn, krop og arbejdspladsrelationer. Roskilde University. Krøjer, J. (2006). Kritisk forskning og forskellige forandringsperspektiver. Nordiske Udkast, 34(29), 23.38. Krøjer, J., & Hølge-Hazelton, B. (2008). Poethical. Breaking ground for recontruction. QSE. International journal of qualitative studies in education, 21(1), 27–33. Lather, P. (2000). Against empathy. Voice, and Authenticity, Kvinder, køn & forskning, 9(4), 16–25. Lather, P. (2006). Foucauldian Scientificity: Rethinking the nexus of qualitative research and educational policy analysis. Qualitative Studies in Education., 19(6), 783–791. Latour, B. (2004). How to talk about the body? The normative dimension of science studies. Body & Society, 10, 205–229. Latour, B. (2007). Reassembling the social: An introduction to actor-network-theory. Oxford University Press. Latour, B. (1987/2003) Science in action: How to follow scientists and engineers through society. Harvard University Press.

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Law, J. (2003). Making a mess with method. Retrieved from http://www.comp.lancs.ac.uk/ sociology/papers/Law-Making-a-Mess-with-Method.pdf Law, J. (2004). After method: Mess in social science research. Routledge. Lindén, L. (2016). Communicating care: The contradictions of HPV vaccination campaigns. Arkiv Academic Press. Lindén, L., & Singleton, V. (2020). Unsettling descriptions: Attending to the potential of things that threaten to undermine care. Qualitative Research, 21, 426–441. https://doi.org/10.1177/ 1468794120976919 Merleau-Ponty, M. (1962/1992). Phenomenology of perception. Routledge & Kegan Paul. Murphy, M. (2015). Unsettling care: Troubling transnational itineraries of care in feminist health practices. Social Studies of Science, 45(5), 717–737. https://doi.org/10.1177/ 0306312715589136 McCoy, K. (2012). Toward a methodology of encounters: Opening to complexity in qualitative research. Qualitative Inquiry, 18(9), 762–772. Nickelsen NC. (2018). Materiel semiotisk analyse–Implementering af KOL-teleomsorg som eksempel. In Kousholt et al. (eds.) Kvalitative analyseprocesser–med eksempler fra det pædagogisk psykologiske felt. [qualitative analytical processes–With examples from the pedagogical psychological field] Samfundslitteratur. Pink, S. (2009). Doing sensory ethnography (1st ed.). SAGE Publications. Raja, R. (2009). Lee Falk’s Phantom–1: Origins of ghost who walks, Comicology. Retrieved Jan 26, 2023, from https://www.comicology.in/2009/04/lee-falks-phantom-1-origins-of-ghost.html Richardson, L. (1997). Fields of play: (constructing an academic life). Rutgers University Press. Vikkelsø, S. (2007). Description as intervention: Engagement and resistance in actor-network analyses. Science as Culture, 16(3), 297–309. https://doi.org/10.1080/09505430701568701

Katia Dupret is head of research and associate professor in social psychology at Roskilde University, Denmark. Her interdisciplinary research focuses on work conditions, emotional labour, ethical dilemmas and social value in working life and Organization Studies. Further, she engages in co-creation of social innovation initiatives in alliance with external stakeholders through participatory design, policy and serious gaming. Jo Krøjer, Phd., Associate Professor, Dept. of People and Technology, Roskilde University. Head of the research group Organisation, Ethics, and Social Sustainability. As a gender and work life researcher, Krøjer specializes in feminist and participatory, interventionist research. She has coedited three volumes on Social Intervention and Sustainability and published over 50 articles, book chapters and special issues on work life, gender, inequality, and sexual harassment. She is part of the SexismEDU-group, who initiated the petition against sexism in DK universities. Currently, Krøjer is PI of the research project ‘Feeling differences and inequality’.

Chapter 17

Among Bodies and Machines: “Epistemological Vulnerability” with Exoskeletons Denisa Butnaru

Introduction Advances in robotics, including exoskeletal devices, have recently seen a constant increase. Rehabilitation and industry are currently among the areas that are most concerned with these technological developments. Originally called “extenders” (Kazerooni, 1990), robotic exoskeletons are defined as “a class of robots that extend the strength of the human hand [or leg n.n., D.B.] beyond its natural ability while maintaining human control of the robot” (Pons et al., 2008, p. 8). From this definition, one may conclude that, similar to other technologies, the role of exoskeletons is to “add” a surplus regarding what human bodies are or are not capable of. Wishing to understand how these technologies transform current realities of the bodies for which they are created, I conducted multi-sited ethnographic fieldwork in centers where exoskeletons are designed and occasionally used. During one of these stays, the experts in robotics allowed me to participate in a test for an exoskeleton developed for persons with motor impairments. This experience compelled me to consider how the knowledge of specific parameters of my body impacts first, the conception and design of a technological device that I myself explored, and second, the knowledge and experience that people with motor impairments need to develop in order to train and possibly recover damaged motor patterns in their bodies. This second aspect was the ultimate aim of my inquiry. This brief autoethnographic moment made me sensitive to how various types of knowledge circulate between bodies and technological objects, how multiple disciplinary arenas and regimes co-invent one another and how this circulation contributes to shaping novel forms of “care in practice” (Mol et al., 2010). As these authors note, “in care practices what it is to be human has more to do with being fragile than with mastering the world” (Mol et al., 2010, p. 15). Understanding the fragility of the D. Butnaru (✉) Universität Konstanz, Konstanz, Germany © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_17

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work between bodies and exoskeletal devices during this test led me to come up with a category I call “epistemological vulnerability”, which I conceive as a form of “care in practice”. My contribution to this collective volume will discuss how my being engaged in observing and understanding my own object of study led me to invest myself in a specific process of care. In this vein, I conceive of my engagement as making a “gift” (Mauss [1935] 1973) to my colleagues in engineering science and thus as participating in a form of “reversibility”. Values from my body were collected for the conception of the algorithm necessary for the proper functioning of the exoskeleton and were thus “offered” for epistemological purposes. Additionally, the same values in the form of the algorithm were meant “to care” for bodies with heavy motor impairments. The vulnerability I categorize here resulted from this experience, which influenced my ethnographic practice. While relying on this ethnographic episode, I view care as epistemological practice, first as an engagement in knowledge production in robotics: seeking to gain knowledge myself, I engaged in a scientific experiment and correlatively in a form of care as “interpellation” (Law, 2002, p. 49). Being committed to being embodied in an algorithm, I became a “vulnerable observer” (Behar, 1996). I exposed myself by helping my colleagues in robotics design a material technological object. I was a human subject who was involved in a scientific experiment. Second, I engaged in further levels of care as, thanks to this experience, I was able to help people with motor impairments by means of values collected from my healthy body. Based on these relational facts, I understand care first as an epistemological exercise, the vulnerability of which cannot omit forms of practice that draw on ambivalence and attention to difference (Lindén & Lydahl, 2021, p. 9). Rendering my own body “available” (Despret, 2004, p. 127) implied an experience by which I was re-produced in the algorithm developed during the above-mentioned test. Being re-produced in the algorithm meant that my body also shaped other human bodies through that very object. The episode that provides the main material for the following discussion was one in which data collected from my walking and breathing during the above-mentioned test were further used to build the device’s algorithm. Besides engaging me in specific forms of “intercorporeality”—by which I mean that my body was co-related and associated with other people’s values and corporeal profiles, all of which compose the algorithm of the robot (Butnaru, 2021, p. 90)—my being digitally translated engaged me in a generative mode of knowledge production. Agreeing to participate in this test made me sensitive on the one hand, to how I obtained sociological knowledge through my own body, and on the other hand to how I provided knowledge, since my body was the test object. In changing from researcher to researched, I also indirectly provided care for the end users who had motor impairments. For the interval of the experiment, I was “decorporalized” (Crary, 1990, p. 39) and quantified (Nafus, 2016); I needed to quickly manage modes of interference and interpellation (Law, 2002, p. 9) while simultaneously continuing to build observations and elaborating my inquiries during fieldwork. Entering very peculiar and strongly determined epistemic parameters characterizing

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the scientific stance of experts in robotics, as well as intersecting experiences of human bodies with deficiencies, made me elaborate the category of “epistemological vulnerability”. This peculiar empirical practice engaged me in a manner of “sorting attachments” (Jensen, 2007): those of natural science and the fine-grained phenomenological ones of the bodies I would encounter without ever knowing them. After a brief description of the test situation in which I agreed to participate and its intended aim, I discuss the phenomenon of “dis/locations of care” and focus on what it means to be epistemologically exposed to one’s own object of study due to an algorithmic transposition into an exoskeleton. In the next section, I analyze how the variety of binary forms of “care in practice” are interrelated with and co-condition one another. Here to elaborate my category of “epistemological vulnerability” further, I explain how tensions and possible forms of epistemological conflict may take shape. I conclude with a perspective in which fieldwork with care reinvests conceptions of research ethics with respect to the ethnographic practice I experienced.

Entering the Field As Mol et al. (2010) noted when describing the intention of their collective volume, Care in Practice: On Tinkering in Clinics, Homes and Farms, technologies [. . .] do not work or fail in and of themselves. Rather, they depend on care work. [. . .] Instead of casting care and technology in contrast with each other, we seek to rethink and reframe them together. This is our concern: to contribute to disturbing and complicating the care–technology distinction. (pp. 14-15).

Being allowed to participate in a test for a rehabilitation exoskeleton during my fieldwork, I was literally given permission to experience how a specific technology is articulated and in turn articulates care relations. Since the device that represented the object of the test was explicitly designed for rehabilitation, its very conception entailed “care”. This test belonged to a series of ethnographic journeys that I carried out within the frame of a wider project that started in 2014 and ended in 2021. I speak of “journeys” because I had the chance to visit eleven sites in three countries (France, Germany and Switzerland) and to learn ethnographically about exoskeletal devices that were designed for both able and impaired persons during these years. In parallel, I learned how these devices also invent the bodies of their users. Although I consider that the exoskeletons conceived for both able and impaired persons are explicitly devices to “care” about human bodies, those designed for the medical field more obviously characterize care. During one of my stays in a lab, my colleagues in robotics science allowed me to participate in a test for an exoskeleton designed for people who had motor deficiencies such as spinal cord injury, stroke or muscular dystrophy. This device was light in weight, for which reason it was referred to as an “exosuit”; it weighed around seven kilograms and had an inbuilt computer that registered the muscular force of its

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users in order to adjust the motor assistance they needed. Unlike predominantly static exoskeletal devices designed to train musculo-skeletal activity and improve blood circulation for people who have complete injuries, the device for which values from my own body were collected was intended for persons who retain some residual motor functions and therefore could employ it for home use. During my stay at this site, I had the chance to meet two of the regular users of this device and to speak with one of them, who had muscular dystrophy. I asked him how he feels when using the exoskeleton. His answer was extremely positive. I wanted to understand the possibilities and limits that this device offered at the time through the process of my body being tested. I therefore realized that entering the field in this particular situation meant entering parameters of impairment; it meant entering radical forms of otherness that were radical precisely because they no longer belonged to the world of “healthy” models. As I wrote in my field notes with respect to my general feeling while being on this site, “this place seems inhabited only by two types of population: the subjects and the objects, the researchers (medical doctors or engineers), and the ‘population’ of ill people. We have difficulties in understanding that the border between subject and object is so blurred in these cases, especially when it comes to experiencing accidents. It seems that we are all under the same umbrella” (field notes 2019, 664). As I was to discover, before the care aspect characterizing medical use, and on a more general level medical practice, other care levels that belonged to a variety of knowledge forms (engineers, physiotherapists, medical doctors, the users themselves) came together to forge the device. In titling this subsection “entering the field”, I especially wanted to highlight that my recounting of the exoskeleton test implied the concrete registration of values from my body that were further needed to build the device’s algorithm. Besides entering a lab (which is far from new in ethnographic practice), I was also entering a scientific object, as the device served a scientific purpose in engineering science, besides its practical application in healthcare. Some exoskeletons may, for example, be designed exclusively for research purposes. The one I experienced and was tested for had the double purpose of research and practical application in the clinic or home use. The test consisted in evaluating my walking for eighteen minutes on a treadmill. The walking was divided into stages of six minutes each, and the speed of the treadmill was gradually increased between the stages. My entering the field entailed both a digital entering that connected me to a wider amount of data about human motor functions and a factual physical one. Although the outcome was supposed to be a digital production, the test was very physical and fleshy, since it implied controlled walking. Being tested meant that the exoskeleton had to be physically attached to my body. Because a variety of values needed to be analyzed, I had sensors and movement captors attached to my body. The latter look like little white balls, which caused me to remark to the students in engineering science who prepared me for the test that I looked like a Christmas tree. One usually sees the digital output of movement captors on a computer screen. Besides recording motor sequences, they mark the shape of the person who is being tested on the screen with small points. For the test, I also had to wear a mask on my face to record my

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breathing and thus analyze my metabolic performance while walking on the treadmill. I have previously mentioned different types of “entering” my field. The novelty of my entrance was that, besides the physical experience of entering the specific space of a lab and also entering the material object (I was inside the exoskeleton or I wore it), I was entering an e-space, a database that accompanied and characterized the technological object, namely the rehabilitation exoskeleton; the same database simultaneously served as a scientific instrument (Hine, 2006) and as a space of interference, in which, as John Law notes, “the difference between insider and outsider cannot be sustained” (2002, p. 9). I had to adapt my ethnographic practice both to a form of “feltness” for the purpose of creating more intimacy (Springgay, 2021) and to a digital world in its generality (Boellstorff et al., 2012), yet characterized by a specific “stock-of-knowledge-at hand” (Schutz, 1967) to the making of which I was actively contributing. Displacing motor patterns from real to virtual to re-embed and re-enact them back into other real bodies refines the specter of fieldworking and draws attention to unprecedented forms of being carefully engaged in the ethnographic experience. As tests in robotics are par excellence strongly defined intervals of time, I had to be careful about how I provided values, strictly following the protocol I was presented with and engaging in a logic of self-control. These displacements and forms of interpellation in which my body was engaged led to the emergence of a variety of care levels: that defined by experts in engineering science, that relying on the expertise of physiotherapists and medical doctors, and finally the care expertise of the users themselves. My engagement with care should be added here. Of course, I “cared” about the values I provided in the test in a different manner than the other test persons involved in the study, as they were not in the lab for purposes of ethnographic research. Through my ethnographic perspective, I aimed to understand the different worlds of bodies and how both users’ bodies and gadgets co-invent one another with experts coming in between. But what the test drew to my attention was whether my decorporalization and quantification were reliable enough for what my fellow researchers in engineering science needed. I was brought to care about their object and about the consequences it would have for the users’ bodies because ultimately I was interpellated by my own research experience in the field. Seeking to understand the wider socio-anthropological impact of how exoskeletons invent the bodies of their users, I engaged in my field in a form that, in the discussed example, meant finally entering the algorithm intended for the device. Besides forging a scientific object, my participation implied that I was making a difference in the lives of the people who were the device’s end users. In doing so, I engaged in a wider “production of ecologies of support in all of their vibrancy and relative opacity” (Duclos & Criado, 2020, p. 167). Reading these two authors as problematizing the topic of “care in trouble”, the very experience I described revealed specific forms of vulnerability that I conceive as indeed a source of trouble, both epistemically and epistemologically.

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Dis/Locations of Care In this section, I will address how my experience of the test described above, instead of strongly locating and thus encouraging a form of the locale (Knorr-Cetina, 1995), rather engaged me in a form of “dis-location”. The outcome of this procedure was that my body’s values were captured and immersed in a “multi-sited imaginary” (Marcus, 1998, p. 14). Interestingly, although at first sight my entering the field was associated with a passive stance (since for the whole duration of the test things were decided about me, and parameters of my walking and breathing were measured and quantified), I simultaneously became an agent in my field. Besides providing reliable data, I had to engage in a caring mechanism regarding what I corporeally provided for the users of the gadget I myself was attempting to understand. In short, I cared for how my being dis-located, by which I mean being materially used and transposed into an immaterial media form—the algorithm of the exoskeleton—would literally aid specific rehabilitation mechanisms for walking deficiencies. My body was a tool but also a sort of “present” used for the conception and design of another tool: the exoskeleton. This process introduced a further nuance to my manner of careful engagement: I concretely became a “place of knowledge production” (Beaulieu, 2010, p. 455). Becoming a research object involved my becoming vulnerable. Interestingly, if face-to-face relations, our most basic forms of phenomenologically engaging otherness (Schutz, 1967; Zahavi, 2009), deeply expose the ethnographer, my engagement within algorithmic relations redimensioned this relation. I engaged in an exchange with a technological object I myself sought to understand while simultaneously trading my body for the sake of helping other bodies. My status changed from “vulnerable observer” (Behar, 1996) to “vulnerable participant”. Such a shift made me engage in a specific connection with my field that I conceive as a form of careful engagement. As Anne Beaulieu notes, “specific modes of mediation can be crucial for meaningful practices in which to engage as participant-observers” (Beaulieu, 2010, p. 457). I would add that specific modes of mediation entangle the ethnographer in situated forms of vulnerability. Both my sensitivity and my reflexivity needed to be specifically sharpened for the duration of the test, as my own body was engaged in a specific mode of mediation and correlatively of dis-location. I understand this mode in a dual perspective: first between the robot and its algorithm, and second between the assemblage robotalgorithm and the bodies of the users. To provide the proper values meant “to care” about how these mediations could best be successful; it also meant that I needed to quickly understand a specific discipline that was bodily grounded and deeply felt. Dis-location therefore started with a body-based, intense stance and with the awareness that if I did something wrong, the data collected from my body may not be reliable. My being an object and providing scientific knowledge was inseparable from my being engaged in a process of “epistemological vulnerability”. As I wrote in my notes,

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“In the beginning of my walk on the treadmill I had troubles with breathing, but the brain got used to the mask I wore on my face. I was able to complete the exercise. The PhD student who accompanied me during the whole test put a roll of toilet paper in front of me saying that I was supposed to focus on that when walking on the treadmill. I had trouble in looking at this object, because the mask was hindering me from seeing the space up to the roll of toilet paper. Consistently, I had the feeling that I could not see my legs and thus I had troubles balancing myself. What I did the whole time was to concentrate on the steps, as if I was walking without seeing at all. I was trying to feel my steps, to feel my feet treading on the treadmill. Sometimes the muscles were more challenged due to the strain created by the machine. Much of the experiment had to do with my ability to stand it due to the unnaturalness of the constraints. Breathing with difficulty because of the mask, the pressure exerted by the cables on my legs, the noise of the measurement or the speed stage. I was constantly between corporeal intervals, counted by one of the MA students present in the test room: three, two, one. Then she changed the speed of the treadmill, as in a sports competition. At times, especially in the first cycle of the “healthy” mode, my body seemed to be absorbed in the movement. The exosuit disappeared. In the second cycle, the “assistance” mode, the exosuit never disappeared; the constraint was always there. Despite the search for naturalness which seems to be the target in using the exoskeleton, I felt it not such a discrete companion. Especially in the second phase, the assistance phase.” (field notes, 2019, 644-645) Overall, the whole experience had to do with time, with how my body felt the constraint, the presence of the device. I was trying to control the steps as much as possible because I was always fearful of biasing the data. The whole experience was about feeling. Feeling my body with the exosuit. (field notes, 2019, 650)

The category at the core of my argument, namely “epistemological vulnerability”, is consequently deeply related to these multiple and fragile levels of mediation that conflate a multiplicity of knowledge forms while reimagining them. Data from my body were meant to be transposed into immaterial forms engaged in forging a technological object that was intended as a “space of care”; however, until they reach any immaterial forms that are computationally defined, human bodies are solicited in order to produce invisibility. My opportunity to enter these transitions and translations, which was made concrete by my participating in this test, engaged me as an ethnographer in the process of (re)inventing some of these knowledge forms simultaneously both with and within the field. With respect to this specific fieldwork experience, to care involved gathering new “epistemic partners” (Boyer & Marcus, 2020, p. 23). I knew that being a test person in a scientific experiment would transform me into an object. I had to face my anxiety because the test had a clear protocol to which I was beholden, but that I also wanted to respect as much as possible. In doing so, I was engaged in a contract of confidence with my colleagues in engineering science. It was this contract that involved me in an epistemological exercise of care: I cared about the reliability of the data that my body provided just as much as the experts did, since I was aware that this data was necessary for people with serious ailments. As I noted in my field notes, “I didn’t want to destroy or produce bad results. This aspect brought a supplementary tension besides the physical one. The unnaturalness of the situation also meant this: anxiety. Both curiosity and anxiety. Anxiety also came from forms of expectation, in the sense that I was expected to perform the

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‘object’. And since being an object in this situation is something rather exceptional—it was the first time I have ever lived this kind of experience—hence not belonging to experiential schemas already in use, anxiety came” (field notes 2019, 654). Entering forms of vulnerability (Butnaru, 2021) meant that, besides participating in constructions of knowledge patterns, I became a participant in the experience of users with motor impairments. The latter were the “unsettling” participants in these transactions. By “unsettling,” I do not mean, as Michelle Murphy notes, “the purposeful undoing and troubling of particular arrangements so that they might be acknowledged and remade in better, less violent, more livable ways” (Murphy, 2015, p. 722). Rather, the “unsettling” aspect of human bodies that are imagined as users concerns an enactive potential. More explicitly, the fact that human bodies are never predictable enough for scientific experiments necessitates that the experts engage in constant exercises of care and continual revisions of the device’s protocols and conceptions. By directly engaging with forms of human vulnerability, exoskeletons are deliberately invented to “care” about human bodies just like the wider medical instrumentarium they are involved in. As often recounted by the experts involved in the development of these novel devices, the realities of human bodies defy those of technologies, and they indeed urge a reflection on the human being that is not in terms of “a discrete category” (Duclos & Criado, 2020, p. 156). On the contrary; the human being challenges experiments by introducing a variety of antagonisms. Especially heavy impairments, such as those leading to a variety of forms of paralysis, demarcate specific regimes of violence to which the conjoined expertise of the people constituting the research teams developing exoskeletons concretely need to respond. By accepting, participating in and, on another level, intervening in these realities (although for a short interval of time), I contributed to crafting further levels of care that are substantially grounded in mechanisms and circuits of knowledge production. Being a part of an algorithm conceived to help researchers in robotics, and especially people with motor impairments, I became a material object that was intended to care for these people’s bodies. Interestingly, as previously described, caring for these bodies with motor impairments engaged me in a process of dis/location. Occupying an “object” position (as I became a studied and measured entity) and its correlative violence, I expanded my intimacy with my research object while contributing to specific epistemologies. In the broader articulation of my fieldwork, the test lasted only a brief moment, all of three hours. Still, as Puig de la Bellacasa notes, “matters of care can be found in every context; exhibiting them is valuable especially when caring seems to be out of place, superfluous or simply absent” (2011, p. 93). In part, it is the ethnographer’s capacity to show and exercise “availability” (Despret, 2004) that may contribute to expanding regimes of care and their role in portraying a more complex image of how bodies and technological devices co-condition one another in specific medical worlds. In the next section, I will provide more detail on the productive function of these tensions.

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Binary Forms of “Care in Practice”: Further Perspectives on “Epistemological Vulnerability” In a paper titled “Choreography for One, Two, and Three Legs” (2005), Vivian Sobchak describes the experience of disability as “the world not being your dance floor” (2005, p. 62). Entering algorithmic worlds and passing through them, and thus approaching worlds of impairment, precisely requires the reckoning with a variety of “dance floors”. Perhaps more specifically, such an experience has to do with the ethnographer’s ability to invent and reimagine dance floors together with the other agencies involved. A dance may be conceived as taking place in pairs, alone or in a group. At first sight, bodies and machines compel one to think about a pair grounded in a difference of materiality. In line with these reflections, to speak of binary forms of “care in practice” with respect to my test experience is justified by a field understanding marked by pairs: first bodies and machines, then experts in robotics and their research object, and finally experts and users. Of course, these realities are extremely complex, and the apparent binarism hides multiple interacting and interrelated agencies. I choose to speak of these binary instances not in a perspective according to which they are divided and opposed; perhaps this is the main outcome of my whole journeying with exoskeletons and their bodies. In line with the view defended by Isabelle Stengers in her discussion of the role of scientific interest, I concentrate rather on how these pairs are interrelated. The connections they produce that join poiesis and praxis (Stengers, 1997, p. 108) are an invitation to rethink what is actually happening in the field and what roles ethnographers negotiate with their studied objects. One is a connecting link as an ethnographer. My perspective on approaching engagement is built on this view, connecting with my fieldwork up to the point of entering the matrix, and finally becoming a part of it. In these enterprises, one logic of care to which my test experience made me more sensitive was that of engineers in robotics, as they are confronted with a very specific parameter when conceiving technologies: safety of use. Tests with able people are necessary to guarantee safety. Regardless of whether exoskeletons are designed for rehabilitation or for able persons in industry and the armed forces, their designers need to follow strict procedures related to scientific and research ethics. One of the engineers I interviewed explained why safety of use, which expands the panoply of activities contributing to how “care in practice” in the lab emerges and which concerned me as well during my test experience, is crucial. In line with a perspective defended by Lorraine Code, in whose view it is crucial to know “things well enough in their specificity and variable detail to engage well with them [. . .] carefully” (Code, 2015, p. 12), the engineer said: We do research with humans and this means, ehm, that we have a responsibility for the humans that try out our ideas, our research ideas. If I do my simulations in my wind farm, in my offshore wind farm, and if I crash the whole system and everything explodes, nobody cares [italics mine D.B.] because it's just a simulation. And it doesn't happen in real life. Or if I destroy a small element somewhere in my computer . . . I can buy a new one . . . But when

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you do this with animals or with people, you influence somebody else's life. And this needs to be restricted and checked so that the test person does not get any harm from the device. Precisely. That nothing wrong can happen (Eng11CH: 32).1

“Nothing wrong” involves both the material possibility of doing harm to the persons being tested, I myself included, and to generate biased results and thus unreliable data, the latter involving the real possibility a user’s body being damaged by the device. It was due to all these various forms of care in robotics labs that I came to theorize an epistemological but also a practical vulnerability. Test bodies are bodies that find themselves between physical locations and algorithmic dislocations; they mark and individualize two realities that meet and that reciprocally transform one another. Here the human is not preserved “against the threat of the outer world” (Duclos & Criado, 2020, p. 156); rather, the human body is preserved for the sake of helping other bodies. The experts who accompanied me during the test cared about my body for the purpose of injecting some values of it into the phenomenological body schemas and (partly) body images of other human bodies. In this regard, I became an algorithmic donor, as models and patterns from my body were “transplanted” to people whose corresponding functions were damaged. In agreeing to become an object of research myself and thus to generate knowledge, my body entered the realm of “archival artefacts” (Lupton & Maslen, 2018, p. 192), contributing to exhorting new epistemological orders that are intertwined with and perform into one another. Having my body tested, I endorsed a further epistemological agreement: in order to receive data for my own ethnographic research, I offered data from my body. In order to transform my body into a receptacle, to come closer to the phenomenological “what it is like” and thus to better conceive how exoskeletons as media reinvent the motor practice and experience of their users—but also to understand some of the challenges experts face in obtaining a certified and safe product—I “donated” the values of my bodily functions. I deepened my understanding of my own research object by entering it. Considering the circularity of knowledge production that characterizes the articulation of bodies and exoskeletons, I exposed myself; I had to confront my own anxieties and quickly learn how to respond to the requirements of my fellow colleagues, and thus to care about the parameters that were essential for their research. To this end, I openly entered a circuit of vulnerability that was inseparable from their knowledge production. In this order of ideas, besides compelling me to explore modes of knowledge production related to both bodies and exoskeletons, the test experience I referred to above challenged me to rethink how the vision of care regarding the “body we do” in the medical worlds (Mol & Law, 2004, p. 57) conjoins a variety of forms of vulnerability, including that I have identified as “epistemological”.

1 The code that I use to anonymize my interviewee is to be read as such: the 11th engineer (Eng = engineer) that I interviewed from Switzerland. I used the acronym of the country. The number after the code denotes the paragraph of the interview. I analyzed the material with the software Maxqda.

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Epistemological vulnerability emerges in these various transfers and processes of materiality and immateriality, many of which are based on complex forms of “corporeal understanding” (Gugutzer, 2017), as well as on negotiations between forms of local and dis/local. However, besides the vulnerability that generally characterizes research tests with humans in robotics, I conceived of a second level of epistemological vulnerability with respect to my own ethnographic practice. Generally, ethnography is related to exposure, which may sometimes turn to extreme forms of harm, such as rape, for example (Moreno, 1995). The form of exposure to which I willingly consented transformed me into a research object in engineering. My own “practice of knowing” (Despret, 2004, p. 130) engaged me in two co-related practices of caring: those of the experts in robotics regarding the device they were designing, and mine towards their research object and towards an ideal body of their users. The latter concerned the reliability of the data my body provided for the algorithm of the device, but also my understanding that this data would prospectively help impaired people through the designed gadget. Being vulnerable implied being engaged within this circularity of knowledge.

To Conclude: Fieldworking with Care Considering the test the object of which was the collection of data from my body for the conception and prospective use of a rehabilitation exosuit, epistemological vulnerability involved how my algorithmic “donor” status forged levels of both expert knowledge and phenomenological experiences of users’ bodies. Indeed, the wider logic of conceiving exoskeletons for rehabilitation gravitates around “matters of care” (Puig de la Bellacasa, 2011, 2017), but this is done by means of the transformative powers of algorithms. Having willingly agreed to take part in a process of instrumentation and interference, I was engaged in strategies operating shifts between the material and the immaterial, and thus in a “collaborative engagement” (Boyer & Marcus, 2020, p. 3). Remarkably, the characteristics of the human bodies are dissolved into an algorithm, only to be rematerialized back in the form of a technological device. They thus compel a reimagination of the comprehension of corporeality, ability and impairment, and an emergence of an algorithmic community of corporeal forms. In these epistemic moves and transgressions, “caring agencies” (Lindén & Lydahl, 2021, p. 3) are continually being negotiated, and with them a variety of responsibility forms, limits and sometimes tensions. In a recent article in which she discusses the category of “ethical reflexivity”, Hella von Unger affirms that “ethical reflexivity asks the researcher to consider possible implications for the participants of the study and the larger social and political context in which the research is embedded. [. . .] It is a genuine component of an engaged and critical research practice that acknowledges the fact that research is not separate from and outside of, but rather entangled with the social phenomena under study” (von Unger, 2021, p. 187). Becoming materially a part of the field sharpens the sensitivity to an ethical reflexivity as previously defined by von Unger,

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a sensitivity to transitory, field-specific forms and moments of “care in practice”, thereby resulting in an expansion and diversification of the ethical research stance. It is within this type of transfer that the complexity and often the resistance of some research field-sites are underlined, and ethnographers are urged to reinvent creative manners in order to resonate “carefully” with their objects of inquiry. It has already been acknowledged that laboratory results may have a provisional quality (Nelson, 2018, p. 23), a position that would contribute to expand my category of “epistemological vulnerability” further. However, entering the field and not only observing it, but also participating in it in the form of translating myself from a state of visibility to one of invisibility, urged me to improvise creative affordances that hadn’t existed for me before as an ethnographer outside this exceptional experience. Having been directly confronted with both the materiality and immateriality of the device and its prospective use in relation to the bodies of the users drew me to further develop, engage with and picture novel epistemic ways and resonances. It is within these nuances and sometimes tensions that I came to reflect on forms of care as an epistemological exercise. Among these, my category of epistemological vulnerability, discussed here, attempts to find an entrance into these uncharted territories.

References Beaulieu, A. (2010). From co-location to co-presence. Shifts in the use of ethnography for the study of knowledge. Social Studies of Science, 40(3), 453–470. https://doi.org/10.1177/ 0306312709359219 Behar, R. (1996). The vulnerable observer: Anthropology that breaks your heart. Beacon Press. Boellstorff, T., Nardi, B., Pearce, C., & Taylor, T. L. (2012). Ethnography and virtual worlds: A handbook of method. Princeton. Princeton University Press. Boyer, D., & Marcus, G. (Eds.). (2020). Collaborative anthropology today: A collection of exceptions. Cornell University Press. Butnaru, D. (2021). Deviant bodies extended bodies: How exoskeletal devices reshape Corporealities and their Phenomenologies in social contexts. [habilitation thesis, University of Konstanz], Germany, 423 pp. Code, L. (2015). Care, concern, and advocacy: Is there a place for epistemic responsibility? Feminist Philosophy Quarterly, 1(1), Article 1. https://doi.org/10.5206/fpq/2015.1.1 Crary, J. (1990). Techniques of the observer: On vision and modernity in the nineteenth century. MIT Press. Despret, V. (2004). The body we care for: Figure of anthropo-zoo-genesis. Body & Society, 10(2–3), 111–134. Duclos, V., & Criado, T. S. (2020). Care in trouble: Ecologies of support from below and beyond. Medical Anthropology Quarterly, 34(2), 153–173. https://doi.org/10.1111/maq.12540 Gugutzer, R. (2017). Leib und Situation: Zum Theorie- und Forschungsprogramm der Neophänomenologischen Soziologie. Zeitschrift für Soziologie, 46(3), 147–166. Hine, C. (2006). Databases as scientific instruments and their role in the ordering of scientificwork. Social Studies of Science, 36(2), 269–298. Jensen, C. B. (2007). Sorting attachments: Usefulness of STS in healthcare practice and policy. Science as Culture, 16(3), 237–251. https://doi.org/10.1080/09505430701568636

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Kazerooni, H. (1990). Human–robot interaction via the transfer of power and information signals. IEEE Transactions on Systems, Man, and Cybernetics, 20(2), March-April, 450–463–MarchApril, 450–463. https://doi.org/10.1109/21.52555 Knorr-Cetina, K. (1995). Laboratory studies: The cultural approach to the study of science. In S. Jasanoff, G. E. Markle, J. C. Petersen, et al. (Eds.), Handbook of science and technology studies (pp. 140–166). Sage. Law, J. (2002). Aircraft stories. Decentering the object in Technoscience. Duke University Press. Lindén, L., & Lydahl, D. (2021). Editorial: Care in STS. Nordic Journal of Science and Technology Studies, 9(1), 3–12. Lupton, D., & Maslen, S. (2018). The more-than-human sensorium: Sensory engagements with digital self-tracking technologies. The Senses and Society, 13(2), 190–202. Marcus, G. (1998). Ethnography through thick and thin. Princeton University Press. Mauss, M. ([1935] 1973). Techniques of the body. Economy and Society, 2(1): 70–88. Mol, A., Moser, I., & Pols, J. (2010). Care: Putting practice into theory. In A. Mol, I. Moser, & J. Pols (Eds.), Care in Practice. On tinkering in clinics, homes and farms (pp. 7–25). Transcript. Mol, A., & Law, J. (2004). Embodied action, enacted bodies: The example of Hypoglycaemia. Body & Society, 10(2–3), 43–62. Moreno, M. (1995). Rape in the field. In D. Kulick & M. Willson (Eds.), Taboo. Sex, identity, and erotic subjectivity in anthropological fieldwork (pp. 219–250). Routledge. Murphy, M. (2015). Unsettling care: Troubling transnational itineraries of care in feminist health practices. Social Studies of Science, 45(5), 717–737. Nafus, D. (2016). Quantified. Biosensing Technologies in Everyday Life. MIT Press. Nelson, N. (2018). Model behaviour: Animal experiments, complexity and the genetics of psychiatric disorders. The University of Chicago Press. Pons, J. L., Ceres, R., & Calderon, L. (2008). Introduction to wearable robotics. In J. L. Pons (Ed.), Wearable robots: Biomechatronic exoskeletons (pp. 1–16). Wiley & Sons. Puig de la Bellacasa, M. (2011). Matters of care in technoscience: Assembling neglected things. Social Studies of Science, 41(1), 85–106. https://doi.org/10.1177/0306312710380301 Puig de la Bellacasa, M. (2017). Matters of care: Speculative ethics in more than human worlds. University of Minnesota Press. Schutz, A. (1967). The phenomenology of the social world. Northwestern University Press. Stengers, I. (1997). L’invention des sciences modernes. Flammarion. Sobchack, V. (2005). Choreography for one, two, and three legs. Topoi, 24, 55–66. Springgay, S. (2021). Feltness: On how to practice intimacy. Qualitative Inquiry, 27(2), 210–214. von Unger, H. (2021). Ethical reflexivity as research practice. Historical Social Research/ Historische Sozialforschung, 46(2), 186–204. Zahavi, D. (2009). Is the self a social construct? Inquiry, 52(6), 551–573.

Denisa Butnaru is Senior Researcher (Privatdozent) in Sociology, at the Department of History, Sociology, Empirical Educational Research and Sport Science, University of Konstanz, Germany. Her areas of research are socio-anthropology of the body and technology, contemporary developments in phenomenology of the body, STS and qualitative methodology in the social sciences (multi-sited ethnography). She is interested in contemporary phenomena related to changing boundaries of human body, more specifically in the impact of smart technologies. Her monograph, Exoskeletal Devices and the Body: Deviant Bodies, Extended Bodies, was recently published by Routledge (2023).

Chapter 18

Making Voices: Curating Encounters with Personal Experiences in an Exhibition Space Tine Friis and Louise Whiteley

Introduction The chapter is motivated by our process of moving personal experiences first articulated in our research practice into the public context of an art-science-humanities exhibition. We hope to encourage all researchers involved in such activities not just to follow formal processes of consent and anonymization, but to ask: What kinds of encounters do we as researchers hope to cultivate in public spaces, which subjectivities (of knowledge) do we facilitate or foreclose, and what are the ethical ramifications? The answer of course depends on the context, and immediately sparks further questions about how to facilitate the desired encounters. We discuss these questions in relation to a case study: the sound installation Gut and Psyche—A Close Listening (2021), created by Tine Friis and sound artist and artistic researcher Eduardo Abrantes for art-science-humanities exhibition The World is in You at Kunsthal Charlottenborg, Copenhagen. In the process of making the installation we asked how could we handle participant experiences in a way that continued the An earlier version of this chapter appeared in Friis’ (2023) doctoral dissertation. T. Friis (✉) Medical Museion, Department of Public Health, University of Copenhagen, Copenhagen, Denmark Novo Nordisk Foundation Center for Stem Cell Medicine (reNEW), University of Copenhagen, Copenhagen, Denmark e-mail: [email protected] L. Whiteley Medical Museion, Department of Public Health, University of Copenhagen, Copenhagen, Denmark Novo Nordisk Foundation Center for Basic Metabolic Research (CBMR), University of Copenhagen, Copenhagen, Denmark e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_18

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response-able care practices that were part of our participatory research (Friis, 2021)? How would this concretely impact the installation, and with what ramifications for research participants, museum visitors, artists, and researchers? The chapter grapples with the notion of careful engagements that frames this anthology by arguing for ongoing meta-reflection on the care ideals that guide processes of presenting participatory research in a public space. In this introduction, we describe our research practice of collective memory-work, and the process and framework within which it was moved into a public space. We then discuss issues of “giving voice” to research participants in two theoretical sections and articulate a wider argument about understanding the movement of participant voices to a public context as a collective practice of rearticulating these voices anew. We engage in dialogue with theories from medical anthropology (Pols, 2008, 2014), critical psychology (Haug et al., 1999; Nissen, 2012, 2018), and science and technology studies (STS; Haraway, 2016). The resulting framework then guides a close analysis of the installation as enacting response-ability (Haraway, 2016) as a particular care ideal that has implications for the subjectivities of knowledge produced in the installation encounter. Collective memory-work is a group-based participatory practice developed by Frigga Haug et al. (1999). The memory-work discussed here took place with 10 female participants, aged between 22–62, recruited based on their interest in sharing experiences of their gut-psyche connections, rather than their gender or membership of categories such as being a patient. The respondents were then divided into two groups—one group living with conditions of their gut or metabolic rate, and one group who personally and/or professionally were interested in the gut, psyche, and their connection. Inspired by the guidelines formulated by Haug et al. (1999), our “memory-workers” (including Friis as the researcher) wrote down memories in response to the prompt One time my gut and psyche talked to each other. . ., in the third person. We then read aloud one memory at a time and analyzed it in the group, focusing on what meanings of gut and psyche were conveyed and how they mattered for the unfolding of the remembered situation. Instead of establishing autobiographical links between memory and memory-worker, the purpose was to experiment with how to articulate the connection between gut and psyche, which is not easily comprehensible to phenomenological experience, and also often subject to taboo (Friis, 2023; Friis et al., in preparation; Hearn et al., 2020; Martin, 2009). This experimentation with articulation enabled an open-ended production of knowledge about gut and psyche, and fostered collective discussion about the importance of a caring and careful research practice (Friis, 2021). This was central when responding to memories of gut and psyche as they touched and moved us when they produced us as knowledgeable about ourselves and each other in new ways. Key to experimenting with articulating gut-psyche connections was therefore to raise awareness of and challenge pre-existing conceptions of gut and psyche, as well as their relationship. This was also pertinent for emancipatory notions in memorywork, as a feminist research practice invested in helping participants to begin wriggling free of constraining conceptions of body, self, and health, and partake in changing them (Haug et al., 1999). Haug et al. (1999) did not mobilize the concept of

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care. Nonetheless, the emancipatory aim of memory-work speaks directly to the ethical and methodological issues of careful engagements addressed in this anthology by challenging norms about female sexuality and gendering, and by exploring how to live better. Indeed, Haug et al. (1999, pp. 282–283) describe the aim of memory-work in terms of developing; . . . ways of living collectively, [. . .] to practice a politics of the body which enables us to live a life of resistance, to perceive in different ways, to forge new connections, and not to subjugate ourselves. [. . .] Our aim is to change the world lovingly.

Friis (2021) has, for example, demonstrated that memory-work on gut-psyche connections can raise issues around the therapeutic potential of memory-work for developing new self-realizations that might touch and move the memory-workers, and how the memory-workers could attune to this affectivity, carefully and with care for themselves and the group: learning “how to care for each other and our past and present selves, rather than whom to care for” (Friis, 2021, p. 111, Friis’ italics). Drawing on Haraway (2016), Friis describes this attunement via the concept of response-ability, that is, the development of sensibilities to respond and act in a given knowledge practice and in relation to its collective. We carried through this concept as a guiding care ideal for presenting our participants’ voices in the sound installation. Indeed, we wanted to encourage discussions about ethical issues of care involved in doing memory-work, as well as discussions about gut-psyche connections. We aimed for the installation to draw attention to the social contingency of body concepts, and the way in which care was negotiated as a process of back and forth between memory-workers. In this, we were attentive to the implicit pull of contemporary ideals about “good” public engagement as open and reciprocal dialogue. We tried to remain open to the possibility that following the care principles of the research could lead somewhere different. In practice, this meant that we also tried to maintain an open curiosity when collaborating with, for example, artists and curators, developing ethical, artistic, and curatorial aspects of the work in dialogue and as equally important (e.g., Abrantes & Friis, 2022). Our use of the verb to move may imply that the process of moving from research to public was similar to changing addresses: packing the personal experiences in the same way that you would pack a vase in a moving box, only to unpack it, and place it on the same table in a new apartment. This, however, was not the case. The change of context raised new care issues, centered on how public representation would frame the participants in particular ways, impute particular values to the knowledge they shared, and suggest particular ways of engaging with what was shared, all shaped by our choreography of the encounter (e.g., through the color, texture, and placement of installation elements). The particular institutional framing—a contemporary art gallery—further constrained how our choreography was experienced.

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“Giving Voice” and Listening The issues of care specific to moving our research into a public setting concerned whether we were “giving our participants a voice”—and if we should do so. In the medical humanities, as in other fields, “giving voice” to groups of people in society who would otherwise go unheard is often valorized. Patients are, for example, given a voice to allow others to hear about and acknowledge their experiences living with disease.1 “Giving voice” also implies that the voice is meant to be heard by someone and for a specific purpose, such as when patients are invited to participate in the development of medical guidelines, even if the patients may find this participation difficult (van de Bovenkamp & Trappenburg, 2009). Despite the often caring intentions of “giving voice,” we suggest, in accordance with Michelle Murphy (2015), to attend to “the complexities and complicities” of care (Murphy, 2015, p. 719). To be careful that care per se is not conflated with doing “good,” and that we also investigate the potentially unintended and negative consequences of caring. “Giving voice” begs questions about power, authority, and what we address as subjectivities of knowledge: Who is giving voice to whom? What form of knowledge is produced? Who is listening? Who is silenced? Who benefits from the voicing? What are the limits of providing public space for those whose voices are at stake? How far are we willing to relinquish control over that space and how a “voice” is understood? “Giving somebody a voice” is more than just creating a certain auditory experience or act of communication. Johanna Motzkau (2021) uses the example of eavesdropping to remind us of the non-innocent aspects of listening, when someone listens without the consent or even awareness of the person being listened to. Motzkau draws our attention to listening as an interpretive and relational process fraught with risks for the listener. As the listener decides how to understand and act on what is heard in a given situation, the listener must be aware of dominant social, political, and economic discourses, that is, “cultures of listening” (Motzkau & Lee, 2022, p. 15). These listening cultures define who may “speak” and what may be “heard” by the listener, and extends to how voicing produces the lister as knowledgeable and capable to act on this knowledge. While considering the issues this raised in our work, we turned to Jeannette Pols’ (2008, 2014) anthropological research into patient knowledge and enactment of care ideals. For Pols, the notion of “giving voice” suggests that there is an authentic voice to be heard by someone more privileged than the “voiced,” and that this someone can clear away barriers to hearing the voice as well as “give” it (back?) to the voiced patients. According to Pols (2014, p. 77), a “given” patient voice “may be impossible

Several studies “give voice” to participants by “collecting” and “representing” their experiences, often without a theoretical or conceptual framework for this form of voicing. This is the case, for example, when “giving voice” is formulated as an article’s purpose statement without further discussion (e.g., Sheppard, 2014), or when “giving voice” is merely mentioned in a paper’s title (e.g., Keshet et al., 2015). 1

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to argue with,” as the patients “present true experiences, not contestable knowledge.” This may in fact be exactly what certain patients might need—to be presented as having uncontested insights into their disease and life circumstances—but it can also close off avenues for engagement between their knowledge, medical knowledge, and other knowledges relevant to understanding or decision-making. If we had aimed to straightforwardly “give our participants a voice,” we might, according to Pols’ argument, have worked against our initial aim of creating encounters with the negotiations of care within our research—the participants’ voices might have become valorized and thus hard to engage with dialogically. This piqued our interest in exploring the subjectivities of knowledge that could be offered to and produced with museum visitors, research participants, and researchers in public spaces. With the phrase subjectivities of knowledge we seek to address how our ideas and values behind the sound installation have implications for the ways in which people experience themselves as knowledgeable in the encounter, and what actions they perceive as being available for responding to this knowledge, either within or beyond the exhibition. Drawing on critical psychology, we take the position that exploring subjectivity does not have to grasp the “complete picture” of a given person in and across all everyday life settings, but that subjectivity is produced by situated participation in concrete socio-material and historical contexts (Nissen, 2012).2 We used this unique opportunity to explore how to cultivate response-able engagement with our participants’ voices, grounded in our understanding of the sound installation as a careful and caring, non-innocent practice.

Care, Knowledge, and Response-Ability in “Making Voices” In this section, we outline the theoretical resources we use to challenge assumptions about “giving voice” as an unproblematic caring practice, and instead to experiment with “making voices” in a way that encourages response-ability. Pols (2014) argues that we should resist positioning patient knowledge as standing in opposition or contrast to medical knowledge—thus also resisting a sharp divide between the medical sciences as producing “facts” or “truths” and the social sciences and humanities as dealing with “pseudo” knowledge and subjective experience. Pols suggests that such contrasting may lead to romanticized images of patient experiences that paradoxically may denounce the value and legitimacy of these experiences, as exotic and outside the “rules of engagement.” Presenting a participant’s voice as an uncontestably true experience, framing it as pure and authentic, can neglect the ways in which “giving voice” is “always also a practice of “making voice,” where a particular story is co-shaped by the conditions in which it is told” (Pols, 2014, p. 77) and, we may add, by the collective of people and artefacts engaged in the voicing.

2 We draw on a specific tradition in critical psychology, with theoretical departures in sociocultural theories (e.g., Vygotsky) and historical materialism (e.g., Marx) (see Hook (2014) for an overview).

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Pols (2008) argues further that enacting ideals of care is inextricably linked to the production of subjectivities of knowledge. In the case of articulating patient knowledge, we might ask who is taken to know what and with which forms of legitimacy. Pols’ argument is an attempt to make it possible to value patient knowledge in ways other than simply accepting it as an individual, phenomenological truth. This implies being attentive to the relations between the process of rearticulating the voices of others, and how this mirrors certain care ideals, with dependencies on and implications for the forms of knowledge attributed to or perceived as being socially accepted or “true” to our research participants, museum visitors, and ourselves as researchers. Subjectivities of knowledge reflect what counts as “good” care according to the particular context, and are thus legitimated ways of engaging with the rearticulated knowledge. Participation is key to the way we mobilize subjectivity in terms of knowledge; participation mediates “on the one hand, subjectivity as “thick” agency—that is, not merely as a kind of cause of events in the world, but complete with intentionality and reasons with which we can identify—and on the other hand, subjectivity as constituted in power, in subjection and objectification” (Nissen, 2012, p. 194). This conceptualization is not reliant on abstract concepts of personhood as a unity “inside” the individual, but implies that our ways of participating in the sound installation—as voices, making voices, and listening to voices—are important for how subjectivities of knowledge are produced by ourselves and in relation to the conditions of the museum space. This then directs our attention to the collectives involved, rather than intra-psychological processes. We mobilize therefore Haraway’s (2016) concept of response-ability as an ethical practice of “collective knowing and doing” (Haraway, 2016, p. 34), in which humans and more-thanhumans become-with each other and render each other capable to answer, act, and acknowledge each other. Instead of taking on or honoring a moral or legal responsibility, response-ability refers to one’s capability to respond to ethical sensibilities attuned to a particular situation, thus taking part in cultivating and shaping responseability in the collective practice. Response-ability can thus be understood as producing a specific form of subjectivity of knowledge that is not primarily tied to the individual but must be understood as part of a collective knowledge practice. Synthesizing the concepts utilized in these two sections on giving voice and making voice, we offer the concept of response-ability as articulating certain care ideals and values for “good” collectivities of knowledge, for example by metareflecting how the various participants of the installation are produced as knowledgeable (or not) and how this may foster capabilities to respond and attune to issues and ideals of care in the installation. In the process of making the installation, visiting the installation, and reflecting upon it, we encouraged all those involved to be response-able in considering how and whose voices are being produced and for which listeners. More widely, we argue that presenting research participant voices in any public context is a collective practice of making voices anew, rather than simply giving voice, and should be carried out by intentionally attuning to the issues and ideals of care in the process.

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Constructing and Encountering the Installation The installation consisted of six core elements: five speakers and a rectangular, burgundy, wooden box (Fig. 18.1). Four of the speakers were placed in a square with the box mounted at chest level on a black wall between two of the speakers (Fig. 18.2). The box jutted out from the wall. On each side of it were two other black walls. The speakers created a “quadrophonic soundscape” for a visitor to walk into; a mix of nonrecognizable sounds that moved between the speakers, creating a sense that the sounds travelled around the visitor in space. Walking into the soundscape, the visitor would stand in front of the box, from which a rumbling sound emanated, generated by the fifth speaker. On the front of the box was a black handle next to two discrete arrows. Pushing the handle to the side opened the box, and the rumbling sound revealed itself as a female-coded voice, speaking Danish.3 The voice was a recording of the Danish actress Mathilde Eusebius, who performed empirical material from our research practice of collective memorywork. Our challenge was how to curate the material in a way that continued the cultivation of response-ability enacted in the research itself; enabling the listeners to linger in pausing, wondering, and questioning what the voices were saying. We did

Fig. 18.1 A glimpse of the installation Gut and Psyche—A Close Listening. The image shows a wooden box, three speakers, and the black walls surrounding the installation. Copyright The World is in You, Medical Museion and Kunsthal Charlottenborg. Photo by David Stjernholm

3

A short video of the installation is available on: www.vimeo.com/795183093. The video shows the first few minutes of the installation audio in Danish, alongside English subtitles.

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Fig. 18.2 Drawing of the sound installation, seen from above. The image shows the setup of the exhibition elements: four speakers, sound box, and walls. To enter the installation, museum visitors would walk across the topmost horizontal line of the drawing. Drawing by Tine Friis

not have the resources to mount ongoing live interactions or events, further hindered by COVID-19 restrictions, so we needed the physical installation to do this work for visitors “unguided.” Below we will outline examples of how this shaped our choices about the materiality of the installation—always with the caveat that we do not know and could not control exactly how the diversity of visitors would respond. Our memory-work produced a large amount of empirical material.4 For the installation, we selected material that thematized the gut, psyche, and their connection by zooming in on stomach pain—more specifically, challenges, as expressed by the participants, of defining, understanding, and relating to experiences of such pain. We chose this material to reflect the diversity of the memories, which ranged from the immediately recognizable to the unfamiliar, and possibly even strange and embarrassing. We saw the diversity, and especially its ability to unsettle, as an opportunity to evoke uncertainty about interpretations that would reproduce dominant discourses, and thus as a potential way to make the listener aware of the cultures shaping the listening and interpretations of stomach pain (cf. Motzkau & Lee, 2022). 4 The written memories from this material are analyzed in detail in Friis (2023) and Friis, Whiteley, and Greco (in preparation).

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The material was anonymized and edited by Friis, who synthesized expressions, sentences, and conversation turn-takings based on ongoing readings, interpretations, and analyses of the material. This included ensuring that all memories were in the third person, allowing the voice actress to speak as if one person—an odd, yet familiar she-person who shares a range of memories about gut and psyche, without necessarily showing how they fit together, or making it clear whether this is a “patient experience” or not. The third person narrator is common in memory-work, aiming to produce an analytical distance between memory and memory-worker (Jansson et al., 2008) and support the cultivation of response-ability where the collective is able to express care for the “selves of the text.” For the installation, we had a related intention to background questions of the memories’ origin and foreground the content. Here we also hoped to cultivate response-ability, generating a sensation of pensiveness in the installation encounter, for example, by inviting the listeners to wonder about what the memories implied for the way we understand and talk about gut and psyche. This illustrates one way in which the sound installation might produce subjectivities of knowledge related to voices; as valorizing the content of the memories as knowledge that can be contested by listeners rather than as first-and-foremost autobiographical narratives that may be difficult to argue with. The installation was developed for the exhibition The World is in You (2021) at Kunsthal Charlottenborg in Copenhagen, Denmark, curated with Medical Museion. Bringing together contemporary art, historical objects, and science, the exhibition told stories about the entanglement between body and world through four themes— microbes, time, generations, and space. It showed how the world is literally within us, from fish bones, buttons, or safety pins that someone nearly choked on, to microbes living with/as part of human bodies. The curators wanted to include “the voice of the modern patient,” and this was the initial framing in the invitation Friis received. However, the invitation was open and did not dictate framing or form—it also derived from the situating of Friis’ doctoral project at Medical Museion. The idea of representing the modern patient was early on discarded as none of the participants were recruited as patients, and we did not want to exclude participants who did not fit the patient label. Instead, the starting point became the memories themselves. On their own, they seemed so fascinating and approachable that we considered just having the memory-texts exhibited. But this did not seem to offer forms of engagement that would cultivate response-ability, aiding the visitors in attuning and being open to the various meanings and issues at stake in the memories, and to retain a critical distance to the subjectivities of knowledge presented and produced. This led to the interest in sound as medium—to allow us to directly engage with the questions of voicing and listening outlined above—and to the collaboration with researcher and sound artist Eduardo Abrantes. This type of collaboration follows a tradition at Medical Museion for developing collaborations between artists and researchers from across disciplines (Arnold et al., 2020; Bencard et al., 2019). Within the diverse and unsettled field of art-science collaboration, we situate our work in relation to projects that combine art and science with perspectives from the humanities or social sciences—the latter most commonly from STS, but here also drawing from critical psychology and medical anthropology (Bencard et al., 2022; Rogers et al., 2021).

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We decided to make the technology of the installation (speakers, wires etc.) visible. Pragmatically, this helped to demarcate the space where the encounter would take place. We also wanted to demystify the installation itself and direct the visitor’s attention to the sound, inviting the visitor to listen closely (Abrantes & Friis, 2022). For this reason, the box is oddly long and placed so the visitor would have to adjust the body to interact with it—most having to stand on tiptoes or slightly bend down to be able to listen in and forced to angle their heads towards the box opening. In other words, to assume a posture of listening closely as indicated by the installation title.

“Making Voices” The soundtrack within the box begins with the following dialogue between voices 1 and 2, starting with voice 1 reading aloud from one of the memory-texts, as indicated in square brackets, and followed by edited excerpts from the memorywork group’s collective discussions that followed the original reading of the texts . The material was originally in Danish and has been translated to English for the purpose of this chapter. Throughout the installation, the voices are not named, but can be differentiated by the actress changing her voice:

Voice 1 [memorytext]

Voice 2

Voice 1 Voice 2 Voice 1 Voice 2 Voice 1 Voice 1 [memorytext]

[background of bubbly electronic sounds, moving physically between speakers, immerses the visitor] There is no doubt about them talking together, but she thinks that dialogue mostly takes place outside her consciousness. She just knows that she cannot tolerate raw red peppers and pears. If she looks at them, her common sense says “why? You do know that we will suffer.” But it is just experiences of “action-effect.” There is no dialogue here. [short break in dialogue, soundscape continues] The person in the text sees herself as knowing very little about the connection between gut and psyche, but in reality, she knows a lot. It’s quite selfcondemnatory in a way because. . . so, it’s also a question of acknowledging that the gut actually knows something and, ergo. . . you have access to that information, I think. More than I, for example, personally have. The things, I shouldn’t eat. It’s more psychic for the gut. For me, it would be more interesting to investigate these things. But to know this, your gut and psyche, I suppose, must have spoken together? But they haven’t. . . haven’t really spoken. It’s just. What could you say. . . But it’s information you have. And where do you get that information from? But I have also. . . but no that’s not true. [short break in dialogue, soundscape continues] Occasionally, she has “not so good days” without a visible reason. Is it only psychic or could it be prevented or eased if she listened to the gut? Were there any signals she missed out on? Is it only subjective perception or could it be measured on the gut’s microflora? Now, she will try to listen more to the gut.

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The exchange is a disagreement between voices 1 and 2. They have different perspectives on what it means to be aware of what one’s gut and psyche are communicating, but appear to agree on the importance of seeing the gut as knowledgeable (see also Friis (2023) and Friis et al. (in preparation)). There is no clear “winner” in their disagreement; voices 1 and 2 appear to be incompatible. Voice 1 does not provide the answers that voice 2 seeks, while voice 2 insists on her interpretation. The research participants are represented in the installation via such dialogues; fragments of their memories and conversations that represent different kinds of knowledge about gut-psyche connections, attempting to resist giving any signals as to which is “most true.” Due to constraints of time and COVID-19, the memory-workers did not participate directly in designing the installation or editing the texts. Rather, their role is comparable to how research participants later “participate” in academic papers— their statements are transcribed by the researcher and, depending on the purpose of analysis, slightly edited for publication format, such as by removing “hmm” sounds made while speaking. However, in this case an actress impersonates the participants’ voices, and the installation is placed in a public space, outside the framework of codified veracity present in the academic format, and via other sensory modalities than in most academic papers. The soundscape is loud enough to create an auditory experience for visitors as they approach the installation, and the recorded voices can also be heard muffled from a distance if the door of the wooden box is open. These sonic extensions are strategies used to lure the visitors to approach and interact with the installation, just as the arrows on the door of the box invite the visitors to open and close the box, allowing or not allowing the voices to be heard. Even if the visitors do not understand (or accept) this invitation, the installation’s use of such strategies to enact our care ideal of response-ability positions museum visitors as intentional subjects, curious and ready to interact with the installation. The installation was developed around this idea of interaction, but we might wonder how successful it was. While The World is in You was designed to encourage visitors to explore the exhibits without a fixed route, most of the exhibited pieces did not allow hands-on interactions, as is typically the case in art institutions. Given that only a few exhibits invited visitors to physically touch the objects, we later wondered if the installation was clear enough at communicating the invitation to open and close the door of the box—when we visited the exhibition, the door to the box was often open. Although this piques our interest as researchers, the actual interaction between the voices, box, and visitors was not possible to track for practical and COVID-related reasons, and in any case is not the focus of this chapter.

Discussion Our aim, in this chapter, has been to examine how ideals of care embedded in participatory research can be continued as that research moves into a public space. We have argued that such presentations are collective practices of rearticulation that

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should attune to the issues and ideals arising in the rearticulation process, rather than blindly adhering to care ideals such as “giving voice” to participants. This is not intended to question the good intentions of making space for marginalized voices, but rather to emphasize the need to critically consider the care ideals motivating the presentation of participant voices and the subjectivities of knowledge they may produce for all those involved in speaking, voicing, editing, listening, and discussing. The process of developing the installation and its analysis was inspired by a theoretical framework drawing together Pols’ (2008, 2014) work on patient knowledge and enactment of care ideals, Nissen’s (2012) conceptualization of subjectivity, and Haraway’s (2016) concept of response-ability. We applied this constellation in our case study of presenting participant voices in a sound installation, aiming to continue the cultivation of response-ability that we had begun in our research practice with collective memory-work. Care issues concerned how the installation produced subjectivities for the people and collectives who participated in it, for example with consequences for their positionings as knowledgeable or not and as speaking uncontested “truth” or not. We attempted to create an encounter that would invite visitors not only to “receive” experiences of gut and psyche, but also to engage with these experiences as forms of knowledge rather than authentic or autobiographical “truth”—for example, to wonder about what these experiences “do” in their listening, to question their content, and to consider what it means to listen to such intimate experiences in a public space. The understanding (and acceptance) of the installation’s invitation, however, would be out of our hands; the voices we presented were literally “sonified” in the resonances and reverberations of the encounter’s physicality, just as their potential to create pensiveness and spark questions would depend on the listener’s interpretation and response. Not only museum visitors listened to the voices; anyone involved in the development of the installation—technicians installing the box on the wall, curators, exhibition architects, tour guides, photographers, ourselves, and so on— could be considered listeners. The participants’ voices were made in all these encounters, rather than given. Even though the chapter mobilizes the concept of care, we have not provided a very precise definition of the concept, noting rather that we see response-ability as an ideal of “good” care in our specific research context and case study. The concept of care became relevant in our memory-work practice as an ongoing collective process, in which we tinkered with our ways of relating to each other and producing knowledge together by listening to and discussing written memories. We see this care approach as related to Maria Puig de la Bellacasa’s (2017) take on care as a practice of transformative ethos, which keeps bringing us back to the question of how to care in specific situations and enabling those implicated to find out how together, precisely because caring is ambivalent and context-specific: “a way of caring over here could kill over there” (Puig de la Bellacasa, 2011, p. 100). This begs, in our reading, a certain openness to being touched, moved, and surprised by the unexpected and challenging (Friis, 2021). It also makes us wonder about how we might have cared differently, what kinds of process are present in a solo museum

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encounter, and how the institutional framing of the art museum might have shaped the kinds of subjectivities produced. Careful engagement is thus at work in our case study as mirroring our orientation to ethical issues of care in our memory-work practice and in its translation into the making of a sound installation, and as resonating with how we, in this chapter, have mobilized response-ability to understand modes of collective knowledge production. We invited the memory-work participants to listen to the sound installation as an audio file, and also to experience it during a visit to the museum space, facilitated by the authors. We were only able to do this with one group of participants due to COVID-19 restrictions, and do not therefore include this material in the main body of the chapter. Rather, we used it as a source of guidance for this discussion, in helping us consider the limitations and counterfactuals of our approach. In general, the participants expressed pleasure at having been involved in this way, approved of the actress’ voice, and seemed to be moved by the social status of the institutional frame within which their words were presented. However, our concerns about “giving voice” did not seem to resonate with our participants as much as we had anticipated. To some extent, our participants appeared to want us to give them a voice because they could trust us, as opposed to journalists or science communicators, who might be more interested in attracting readers with a captivating story. One of the participants suggested that we display individual portraits alongside the actress-performed reading of their memories. Her suggestion follows here, translated from Danish to English: [. . .] often when you see other exhibitions, those things that have the strongest effect on me are when I can see that it’s just an ordinary person, then it’s actually easier for me to relate to . . . you know, it’s easy for me to relate to this because it’s me who said and wrote it . . . But if, maybe, there had been a picture of me . . . somewhere, and you could put on headphones, and I could tell [the experiences] myself, well, still with another voice.

Our participant expresses the opposite impulse to that which had guided us to anonymize and remix the research material; we had been concerned that an autobiographical framing would obscure the collective nature of memory-work, reduce people to their gut troubles, and present the participants as having unchallengeable personal knowledge rather than as participants in a conversation about what can be known (Pols, 2014). Later, we began to wonder how to articulate what we were, in fact, “giving back,” if not their voices or individual stories. The material had been sampled and combined to centralize challenges around stomach pain; a topic that is rarely talked about, even though everyone will experience stomach pain at some point(s) in their lives. In this sense, the challenges of stomach pain are usually not allowed to “speak” in people’s listening, and thus go “unheard.” The material was sampled and edited to create synergies and tensions between the memories and bits of conversations, allowing existential nuances to appear more clearly. When making the participants’ voices anew, we were, in other words, creating a platform for the otherwise “unheardness” of their experiences—the challenges of understanding, defining, communicating, and acting on stomach pain—to be voiced. That is, giving the unheardness an

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opportunity to speak in the museum visitors’ listening processes, amidst or perhaps in cacophony with the discourses shaping their listening.5 This process was exciting but also fraught with hesitations about what the implications of our choices might be: For example, to what degree should we instruct the voice actress to mimic the intonations and atmospheres of the audio recordings of the readings of the memory-texts and conversations within the research? How would the order of the memories and conversation matter; what might different juxtapositions “do” in people’s listening? We do not have an answer to these questions, but asking them helped keep our attention on the implicit ideals at play, and we invite readers to ask themselves such questions when engaging in experimental and/or artistic public engagements. Acknowledgements This work would not have been possible without the contribution and assistance of many others. A heartfelt thank you to the women who took part in our collective memory-work, sharing their gut and psyche experiences and exploring each other’s memories with humor and sensitivity. A big thank you to Eduardo Abrantes for embarking on the co-creative process of making the installation and for being open to the nature of the research and the sensibilities it demanded in our collaboration. We would also like to thank the curatorial team of The World is in You: Adam Bencard, Jacob Lillemose, Kristin Hussey, and Malthe Kouassi Bjerregaard. Our colleagues at the Medical Museion and Kunsthal Charlottenborg contributed in various ways to make the installation a reality, just as Mathilde Eusebius gave voice to the participants voices and ALOH Studio built the box. We received generous support from our colleagues in the research project Microbes on the Mind, based at Medical Museion and the Novo Nordisk Foundation Center for Basic Metabolic Research, University of Copenhagen, and funded by the VELUX Foundation.

References Abrantes, E., & Friis, T. (2022). A close listening to our gut and psyche: Insights into a collaboration. In M. K. Bjerregaard, A. Bencard, & J. Lillemose (Eds.), The world is in you: A science engagement project curated by medical Museion. Medical Museion, Department of Public Health, and Novo Nordisk Foundation Center for Basic Metabolic Research, University of Copenhagen. Arnold, K., Bencard, A., Pedersen, B. V., Söderqvist, T., Tybjerg, K., & Whiteley, L. (2020). A house of collaboration: Investigating the intersections of art and biomedicine. In C. RossiLinnemann & G. de Martini (Eds.), Art in science museums: Towards a post-disciplinary approach (pp. 48–60). Routledge. Bencard, A., Bjerregaard, M. K., & Lillemose, J. (Eds.). (2022). The world is in you: A science engagement project curated by medical Museion. Medical Museion, Department of Public Health, and Novo Nordisk Foundation Center for Basic Metabolic Research, University of Copenhagen. Bencard, A., Whiteley, L., & Thon, C. H. (2019). Curating experimental entanglements. In M. V. Hansen, A. F. Henningsen, & A. Gregersen (Eds.), Curatorial challenges: Interdisciplinary perspectives on contemporary curating (1st ed., pp. 134–146). Routledge.

5 This line of thought was prompted by Johanna Motzkau’s suggestion that the installation was giving voice to the “unheardness.”

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Friis, T. (2021). Recasting ethical dilemmas in participatory research as a collective matter of ‘response-ability’. STS Encounters, 12(1), 89–124. Friis, T. (2023). One time my gut and psyche talked to each other. [Doctoral dissertation]. University of Copenhagen. Friis, T., Greco, M., & Whiteley, L. (in preparation). “One time my gut and psyche talked to each other”: The flexible use of mind-body dualism to articulate socially situated selves. Haraway, D. (2016). Staying with the trouble: Making kin in the Chthulucene. Duke University Press. Haug, F., Andresen, S., Bünz-Elfferding, A., Hauser, K., Lang, U., Laudan, M., Lüdeman, M., Meir, U., Nemitz, B., Niehoff, E., Prinz, R., Räthzel, N., Scheu, M., & Thomas, C. (1999). Female sexualization: A collective work of memory. Verso Classics. Hearn, M., Whorwell, P. J., & Vasant, D. H. (2020). Stigma and irritable bowel syndrome: A taboo subject? The Lancet Gastroenterology & Hepatology, 5(6), 607–615. https://doi.org/10.1016/ S2468-1253(19)30348-6 Hook, D. (2014). Critical psychology (1st ed.). UCT Press. Jansson, M., Wendt, M., & Åse, C. (2008). Memory work reconsidered. NORA–Nordic Journal of Feminist and Gender Research, 16(4), 228–240. https://doi.org/10.1080/08038740802441048 Keshet, Y., Schiff, E., Samuels, N., & Ben-Arye, E. (2015). Giving voice to cancer patients: Assessing non-specific effects of an integrative oncology therapeutic program via short patient narratives. Psycho-Oncology, 24(2), 169–174. https://doi.org/10.1002/pon.3621 Martin, E. (2009). Bipolar expeditions: Mania and depression in American culture. Princeton University Press. Motzkau, J. (2021). Cultures of listening, dark listening and a plea for theory. Journal for the Theory of Social Behaviour, 51, 689–694. https://doi.org/10.1111/jtsb.12317 Motzkau, J. F., & Lee, N. M. (2022). Cultures of listening: Psychology, resonance, justice. Review of General Psychology, 108926802210779, 3–25. https://doi.org/10.1177/10892680221077999 Murphy, M. (2015). Unsettling care: Troubling transnational itineraries of care in feminist health practices. Social Studies of Science, 45(5), 717–737. https://doi.org/10.1177/ 0306312715589136 Nissen, M. (2012). The subjectivity of participation: Articulating social work practice with youth in Copenhagen. Palgrave Macmillan. Nissen, M. (2018). The constitution and the singular identity of the collective: Who, ‘we’? Subjectivity, 11(4), 357–377. https://doi.org/10.1057/s41286-018-0061-2 Pols, J. (2008). Which empirical research, whose ethics? Articulating ideals in long-term mental health care. In G. Widdershoven, J. McMillan, T. Hope, & L. van der Scheer (Eds.), Empirical ethics in psychiatry (pp. 51–68). Oxford University Press. Pols, J. (2014). Knowing patients: Turning patient knowledge into science. Science, Technology, & Human Values, 39(1), 73–97. https://doi.org/10.1177/0162243913504306 Puig de la Bellacasa, M. (2011). Matters of care in technoscience: Assembling neglected things. Social Studies of Science, 41(1), 85–106. https://doi.org/10.1177/0306312710380301 Puig de la Bellacasa, M. (2017). Matters of care: Speculative ethics in more than human worlds. University of Minnesota Press. Rogers, H. S., Halpern, M. K., Hannah, D., & de Ridder-Vignone, K. (2021). Routledge handbook of art, science, and technology studies. Routledge, Taylor & Francis Group. Sheppard, K. (2014). Deaf adults and health care: Giving voice to their stories. Journal of the American Association of Nurse Practitioners, 26(9), 504–510. https://doi.org/10.1002/ 2327-6924.12087 van de Bovenkamp, H. M., & Trappenburg, M. J. (2009). Reconsidering patient participation in guideline development. Health Care Analysis, 17(3), 198–216. https://doi.org/10.1007/s10728008-0099-3

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Tine Friis is a postdoctoral researcher at Medical Museion and the Novo Nordisk Foundation Center for Stem Cell Medicine (reNEW), the University of Copenhagen. Her research engages with emerging biomedical research and its perceived promissory potentials, with a focus on how the human body, self, and health are conceptualized across biomedicine, culture, and personal experiences. In relation to this, her research experiments with museum spaces and exhibition practices in facilitating encounters between publics, research participants, and research findings, while also addressing issues of care and ethics in such encounters. Louise Whiteley is an Associate Professor of Medical Science Communication at Medical Museion and the Novo Nordisk Foundation Center for Basic Metabolic Research (CBMR), University of Copenhagen, Denmark. She also curates exhibitions and events, including Mind the Gut (www.museion.ku.dk/mindthegut). Her research interests include how biomedical research affects and reflects how we see ourselves, the role of (mis)communication in collaboration, and how making things together can facilitate public engagement and interdisciplinary research.

Chapter 19

On Being Carefully Useful: Body (Ing Work) in Ethnographic Collaborations Alexandra Endaltseva and Sonja Jerak-Zuiderent

I can give you a recommendation letter, and you may go and interview people, but they will lie to you. You have to assure them to trust you. And for that, you have to be useful. They don’t care about your research. They don’t have time for it. It is too far and it will be too late anyhow. They need immediate relief in the workload. (They need) projects which would bring money into the organization and, consequentially, pay the work of patients who are tired and f…cked up by their society and their life (Oleg L, April 2016, personal communication).

This is how Alex, with Sonja accompanying her research as a supervisor, started her fieldwork within the Russian Multiple Sclerosis Society (RuMSS)—a patient organization uniting 47 regional Multiple Sclerosis (MS) societies in different cities across Russia, devoted to the protection of rights and the improvement of lives of people with and affected by multiple sclerosis. Oleg's encouragement to “be useful” has become our ‘unsettling’ (Murphy, 2015) voice throughout the 3 years of mixed in-person and online ethnographic research in Russia. It accentuated the non-innocence of attachments and responsibilities that we,1 Alex and Sonja, bring into the field as we think, feel, and do research on patient organizations’ work. As we were staying with the ‘unsettling’ (ibidem) puzzle of how to ‘be useful’, we were noticing how ‘being useful’ (and its limitations) gets composed, decomposed, and

1

We, if not specified otherwise, we refer to a specific ‘we’, to Alex and Sonja.

A. Endaltseva (✉) CEMS, École des hautes études en sciences sociales, Paris, France CERTOP, Centre national de la recherche scientifique, Toulouse, France S. Jerak-Zuiderent Amsterdam University Medical Centres, Department of Ethics, Law and Humanities, Amsterdam, The Netherlands e-mail: [email protected] © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 D. Lydahl, N. C. Mossfeldt Nickelsen (eds.), Ethical and Methodological Dilemmas in Social Science Interventions, https://doi.org/10.1007/978-3-031-44119-6_19

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recomposed in patient stories, relational frictions, and confessions, such as that from Olga M, the president of the Moscow chapter of the RuMSS (Moscow MSS): (…) Three-four years—and it becomes too hard. Too much pressure and too much stress. Take an example of Natalia Z.2 She was like a mother [to the Moscow MSS]. Wise, professional, hard worker. (…) But after some time of her vice-presidency, it was difficult to even look at her. Her health was very poor. Natalia left last year—and she looks wonderful. I supported her withdrawal from the post. She still runs her programs [yoga rehabilitation and MS orthodox community], but in a less stressful manner as she would as a vice-president of a patient organization. We have incredible people working for us [Moscow Multiple Sclerosis Society], and we kill them. (Olga M, personal communication, 2017).

Olga’s uneasy and troubling story opened another, “darker side” of usefulness, turning our attention to the “violence” committed in the name of care (Martin et al., 2015, p. 627). Coupled with Oleg’s warning that “they don’t need” our research, which is “too far and will be too late”, Olga's story pointed us towards various facets of ‘being useful’. The many encounters with the question of being useful have been creeping into our ethnographic practices and research orientations, making us carefully consider “the obligations that we have to a certain field” and what we do “because we are obliged by the situation, the occasions in which we are engaged” (Puig de la Bellacasa & Papadopoulos, 2018: np). Thus, our ethnographic work was composed with a sensitivity to Oleg and Olga’s positions on being useful, Puig de la Bellacasa and Papodopoulos’s invitation to “thinking carefully about interdependencies, relations, positions within a certain field, a certain ecology and what you produce” (ibidem) and De la Cadena et al.’s (2015) probing of how different worlds are being respected (or not) in ethnographic engagements. Apart from researching how patients with MS get engaged (or not) in patient organizations, our field was inviting us to pay equally attention to how to get engaged with ‘their’ engagements with care. In this chapter, we return to the different formulations, contestations, and configurations of usefulness which we have encountered when studying the invisible, mundane, and neglected work put into maintain patient organizations in Russia. Going back to Oleg’s emphasis on “projects which bring money into the organization” and Olga’s confession that working in a patient organization may “kill”, we are putting together the many meanings of being useful in a patient organization, while puzzling with how ethnographic engagements and the different facets of ‘being useful’ relate to each other. How does 'usefulness' (our usefulness included) manifest in a patient organization? For whom and what? According to which commitments and feeding into whose benefits? Going back to the instances of our fieldwork, we do the ‘unsettling’ work of “reckoning with the histories and structures that unevenly dispossess, disappear, and disentangle, as much as those that award privilege, include, direct sympathies, and spark intimacies” (Murphy, 2015: 731). We explore how different ‘being useful’-s relate to ‘engaged’ research in general, and how these different ‘being useful’-s relate to the notion of care in ethnographic engagements in

2

A person with multiple sclerosis.

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particular (see Endaltseva & Jerak-Zuiderent, 2021), if they do? These questions require us to ‘sort out our attachments’ (Jensen, 2007) when puzzling with how to ‘be useful’. It also requires, we suggest, attention for how such ‘being useful’ instantiates through bodies and what these bodies are doing in specific ‘useful’ and/or careful moments of social science practice, ethnography in particular. The question of careful engagement in ethnographic research may include exploring experimental collaborations and the use of research devices as an intervention (Sánchez Criado & Estalella, 2018), the hierarchies woven into the co-laboring in ethnographic research (De la Cadena et al., 2015) or taking a stand for the neglected and marginalized (Star, 1991). In our case, we focus on how ethnographic engagements are embodied. We do so ‘methodographically’ grounded in instances from our ethnographic work, that is, by paying attention to the ways in which research practices shape research questions, actions, relations, accounts, (Lippert & Douglas-Jones, 2019; Lippert & Mewes, 2021; Lipper and Mewes, this volume). And we do so ‘from a body’, by particularly paying attention to how bodies move and how they are moved by ‘an-other’. This includes our own research bodies and the bodies of the people we encounter. We start by situating our ethnographic work within the RuMSS. By reflecting on how bodies matter in such ethnographic work, we develop the notion of body(ing) work. We then return to the instances of our ethnographic fieldwork to explore how ‘being useful’ shows in such bodying work, highlighting a particular modality of such work, which we call ‘pausing’. Finally, we reflect on how pausing as bodying work contributes to careful engagements.

Engaging with RuMSS Multiple Sclerosis (MS) is a life-long disabling condition which affects brain and spinal cord, producing a variety of symptoms, from chronic fatigue to the loss of motricity. It is mostly diagnosed among young population, between 20 and 40 years old, and more often among women. The symptoms of MS appear in an unpredicted manner, causing difficulties in employability and social inclusion (Nicolson & Lowis, 2002; Mazanderani et al., 2018; Valyukh et al., 2018). Given these symptoms and demographic descriptors, people with MS and their carers become active participants organizing their futures with MS (Nicolson & Lowis, 2002); pharmaceutical companies get interested in ‘long-term clients’; and “the state does not want to waste economically active population” (Oleg L, personal communication, November 2016). Strengthening on these three pillars, the Russian Multiple Sclerosis Society (RuMSS) became one of the oldest, largest and the most influential among the total of about 40 federal patient organizations within the Russian patient movement. It now unites 35,572 members—patients, carers, and health professionals (mostly neurologists) who make up 47 regional MS organizations. According to its official charter, RuMSS is a membership-based self-regulated public body which provides heterogenous help and support to the people who suffer from multiple sclerosis and other demyelinating illnesses; and facilitates their

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optimal adaptation within the society. The work in the organization, which ranges from lobbying to managing web resources to curating rehabilitation programs, is done by patients themselves, as well as by engaged carers and health professionals. As a doctoral student residing in academic homes in France and Sweden, with background in communication and social movements, Alex was wondering how exactly this work is done. In the public sphere, the RuMSS work appears in various ways: as the mass media communiqués for affordable medications from the RuMSS president, a neurologist Yan Vlasov; as public statements from another former RuMSS president, a psychologist Igor Tsikorin or as reviews celebrating the RuMSS patient forum, a winner of the Google Grants award, under the lead of an IT specialist with MS Oleg Ipatov. These stories are stories of victories, of breakthroughs and patients’ strength, told mostly by men and mostly men without MS. However, given that MS mostly affects women and that the majority of RuMSS patient members are women, and given the possible effects of the unpredictable symptoms on the work within the patient organizations themselves, we were looking to get engaged with other stories; stories told by people with MS, especially by women with MS, about their work with MS and about care.

Bodying Work Our reflections in this article emerge from a concern with the invisibility (Star, 1991) of both, the patient activist work in Russia and of the labour of the ‘patientsmaintainers’ who do the daily work ‘on the ground’.3 Our concern with the neglected and invisible work within the RuMSS comes ‘from somewhere and for someone’ (Jerak-Zuiderent, 2015): it comes ‘from a body’, from a sense of feminist embodiment (Haraway, 1988), and from taking seriously how bodies (female women’s bodies, young bodies) get into scientific accounts. Otherwise put, our concern comes from a cultivated sensitivity to what bodies do/do not do when they engage ethnographically. For example, according to Oleg L, our research engagement was not ‘useful enough’ (or, rather, it was not useful for a very specific strata of the RuMSS —the leadership). We suggest, however, that our engagement was about a different kind of usefulness—that which cares for the invisible, neglected, (Star, 1991) ‘different voices” (Gilligan, 1982) of the Russian patient movement. What we are troubled with in this chapter is thus broader than the ambiguities of usefulness linked with the different attachments in intervention research mentioned by Jensen (2007). We would like to further the ‘ethics of specificity’ and personal experience (Jensen, 2007; Zuiderent-Jerak & Jensen, 2007) in defining what counts as useful, pointing to how usefulness gets imprinted within and inbetween bodies and, along with that, pointing to the embodied knowing of being useful in ethnographic engagements.

3

We have limited our fieldwork to the Moscow region and to the Moscow MS Society.

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Moved by the ‘unsettling’ (Murphy, 2015) search for being useful in our engagement within the RuMSS, we seek for figures of usefulness’ ‘from a body’ (Haraway, 1988): bodies with and without MS; male and female; victorious or ‘f…cked up by society’; human bodies and organizational bodies; bodies-in-movement and those who are set on pause by MS exacerbations. Engagements happen within and inbetween bodies, and such engagements require work, which we call “bodying work”, drawing on the work of the dancer and philosopher Erin Manning (2013). According to Manning, a body is “More-than its taking-form (…), “it is an ecology of processes (and practices, as Isabelle Stengers might say) always in co-constellation with the environmentality of which it is part. A body is a node of relational process, not a form per se,” (2013: 19). This implies, in our case, approaching a body in ethnographic practice as a node in a process of chronic patient movements in Russia and appreciating that a body—a researchers’ body, a body with MS, a female body—is in a continuous co-transformation with the stories and happenings it encounters and is embedded in. Natalia Z embodies a different node when she serves as a vice-president of the Moscow MSS than when she “runs her programs in a less stressful manner”; Alex embodies a different node behind the desk in a research laboratory in France than during the hippotherapy trip organized by the activists of the Moscow MSS. We draw on ‘bodying’ (Manning, 2013) as a notion to describe the continuous, co-laboring movement of acquiring a body; and we suggest that attention to bodying work instigates a particular modality of engaged research, where We always happen in the middle. Not first a thought, then an action, then a result, but a middling, “we” the result of a pull that captures, for an instant, how the thought was already action-like, how the body was always also a world. Not first a body then a world, but a worlding through which bodyings emerge. (Manning, 2019: 1).

Cultivating a sensitivity to this ‘middling’ requires care and results in this sense in careful engagements. However, “acts of care are always embroiled in complex politics. Care is a selective mode of attention: it circumscribes and cherishes some things, lives, or phenomena as its objects. In the process, it excludes others. (…)” (Martin et al.: 628). In this sense, careful engagements in our research, as we try to elaborate in the remainder of the chapter, necessarily imply an attentiveness to ‘worlding through bodying work’. In other words, it matters how one engages: how bodies move, are moved by ‘an-other’, or not. Let’s see in the following section how such moving and being moved results in transformations of what seems to matter, what one cares for.

Tensions for Careful Engagement In April 2016, Oleg L opened our fieldwork saying that through being useful, ‘we’ can ‘assure them to trust’. However, when usefulness emerges within bodying work and with care, within the oscillation between ‘us’ and ‘them’ (or, rather, ‘our’ and ‘their’ bodies), trust is not something achieved, but continuously co-constructed. It is

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not “assured” but cultivated in bodies through a back-and forth movement of creating a co-laborative knowledge-making space; moving and being moved through walking, eating with each other, moving or being moved by the stories told, and attending to the troubles our bodies cause. This knowledge making space, expanding on De la Cadena et al. (2015), welcomes different interests and visions of usefulness and allows for working together while accepting different understandings of the world. What we learn from the work on ethnographic engagements and the building of relations between the researchers and the people encountered through the research, is that the creation of such space is “not just happy associations or consensual relations” (Myers, 2020: 99). Embodied trust comes, as we show, with tensions, discomfort, misalignments and frictions (Atkinson-Graham et al., 2015; De la Cadena et al., 2015; Jerak-Zuiderent, 2015; Sánchez Criado & Estalella’s, 2018) and, is based on a “mutual acceptance of incommensurability” (Pols et al., 2018: 97). We see these tensions as integral part of ‘middling’, the process of bodying work: doing fieldwork on the maintenance of lives with MS through a body without MS; doing fieldwork as a woman in a patriarchal society; joining rehabilitative yoga classes in a healthy body; learning to care non-oppressively when helping patients with walking or going to the toilet; and articulating body-in-research with RuMSS organizational body and a larger societal body. In these tensions, bodies get affected, distorted, and transformed by each other’s presence (physical, affective, symbolic), rendering engagements careful. Consider a former RuMSS president’s comment on Alex’s note taking during an interview after an official meeting in London. “I know only two professions that are so good in keeping track: CEO’s secretary and secret services…and you definitely don’t look like a secretary. Are you not telling me something about your research?” (Igor T, September 2017). Attending to this comment from what bodies do, in relation to other bodies, helps us to trace how care replaces the search for trust, changing our bodies in ethnographic engagements. Let us briefly demonstrate this process. The practice of note-taking (performed by Alex—a woman with accent— in London) is rarely encountered in health-related research in Russia, as Russian medical anthropologists struggle for recognition when it comes to defining disciplines (Borozdina & Linde-ozola, 2011). In addition to this, activist work in Russia (and not only) proceeds under the fear of punishments for state criticism, shrinking opportunities for civil freedom, and ubiquitous surveillance. September 2017, when Igor commented on Alex’s note taking, marked the aftermath of the 2015 Crimea conflict and the following of mutual sanctions between the ‘West’ and Russia. Russian NGOs were prohibited to work with foreign capital for a threat of a permanent closure, and this prohibition became an excuse for purging many watchdog and civil society organizations (such as Amnesty International). In such a climate, the lesser contact with the ‘foreign world’ exists, the better. Given that Alex’s body was mostly residing in France and Sweden, while she spoke fluently the language and held Russian nationality and ethnicity, we read Igor T’s comment as an example of tension in bodying work—tension in composing his body-in-speaking about the RuMSS with the suspicions born in reaction to Alex’s body-in-notetaking.

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The Embodied Modalities of Being Useful In Russia, there is little work on patient organizations and collective patient knowledge. Russian sociologists confess that patient organizations are one of the least researched areas of the society (Krashennikova, 2009; Shirokova, 2011; Masyuk, 2015). Some academic articles and books on the topic are co-authored by the current RuMSS president Yan Vlasov in the framework of rehabilitation for multiple sclerosis patients (Kurapov et al., 2011; Vlasov, 2006; Vlasov et al., 2011, 2017, 2018). Among those, some present a model of the Russian Multiple Sclerosis Society and its role in patient rehabilitation and in a civil state (Vlasov, 2006). Most of the above-mentioned texts serve as artifacts for ‘evidence-based activism’ (Rabeharisoa et al., 2014), what Yan and his colleagues in the Russian Union of Patients use to legitimize and push forward their claims. Other sociological works, not meant for advocacy or activist purposes, still rely on Yan’s and his teammates’ expert opinions (Shirokova, 2011). Commenting on this state of research, Oleg L explains it is so due to the strict state regulations in every sphere concerning health in Russia. Regulations in doing health-related business; in advertising; in the choice of national generic medications over the international originals, and in the closed information policy of the health institutions. So, according to Oleg, if we are to question a patient movement in Russia, we have to be useful in a particular way. ‘Sorting attachments’ (Jensen, 2007) ‘from a body’, we note that Oleg Lavrov is a Doctor of Medicine and a former general director of the RuMSS. In the past years Oleg has passed on his voluntary managerial position as a RuMSS director and changed healthcare career to corporate management and entrepreneurship, and later to business methodology and knowledge management. For Oleg, usefulness in terms of advancing strategic vision and organizational operations is key to engage patients who maintain RuMSS into research. Oleg explains that people who do the work in a patient organization are swamped with daily tasks of maintaining both their body and that of an organization. Useful engagement would, according to Oleg, find ways to support these tasks: automatizing online forum-related work, writing grants, and contributing to the bigger RuMSS strategy, in line with Yan’s publications and a managerial vision of what matters for RuMSS. This version of useful engagement is configured with and within a particular body, Oleg’s body, in relation to similar bodies (male, without MS)—Yan’s, for example. Even if Oleg articulates usefulness with bodies who are swamped with work and “f..ed up by life”, these bodies are not engaged in the construction of usefulness. When attending to the invisible [or neglected? Or silent?] voices of bodies with MS, we learned that there is yet another version of usefulness in RuMSS— that of suspending the move to be useful. Alexandra B, the Moscow MS Society vice-president (one of RuMSS regional chapters), tells that each year some enthusiastic volunteers approach her, proposing a project, a festival, a program, offering their good will as useful citizens. However, only a tiny percentage of what is being proposed emerge as a result of collaborating with patients, and even a tinier percentage really follows through. Moved by a hip

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idea with ‘social meaning’, such as an online patient school, business-oriented enthusiasts often underestimate the difficulty of work of an NGO with multiple sclerosis. This is a multifaceted difficulty: in a sense a difficulty of management, affect, and the lack of resources (bodily, material, emotional), says Alexandra B. Working with MS means working long hours, no profit; it means an uncertain team (patients’ state of health may be unpredictable), little exposure (many MS patients prefer not to disclose their illness for fear of losing jobs), and scrapping for material resources. Alexandra B points out that people with and affected by MS do this work because it is a question of life and death. Such work has no beginning and no end; in a sense, it is timeless work which comes from a body with MS. This is different from the version of usefulness expressed by Oleg L, when patients don’t have time to discuss their work, and ‘we’ have to bring to ‘them’ ready-made proposals. Many useful in this sense enthusiasts, Alexandra B shares, are not aware of the fact that a chronic illness requires ‘chronic’ project work. Such project work implies bodily presence. It sustains and preserves vitality, even if such ‘chronic’ project work does not seem particularly useful or showing immediate, measurable results or effects (consider a tradition of a collective walk of disabled members of RuMSS for the national Victory Day). Alexandra B, a woman living with MS for about 10 years, during and due to which she lost her job and her marriage, is one of the four women at the heart of the Moscow MS Society. Alexandra B.’s position demonstrates that the federal usefulness (that which falls into the RuMSS strategy) is far from what is useful for the ‘maintainers’ like her in each region—what we call careful usefulness. What Alexandra knows from her body is that one-time solutions, even if they relieve the workload in this very moment, are not worth the resources from none of the parties involved—they are not useful—‘chronically’. Alexandra B brings us closer to another version of being useful resonating with Susan Leigh Star’s ‘monstrous’ (1991) non-abidance to the managerial visions of self and the collective. Not just ‘being useful’ to ‘assure’ trust by following the bigger RuMSS strategy, but a kind of a situated bodily knowledge of usefulness which is beyond the categories of ‘us’ and ‘them’, “permanently escaping, subverting, but nevertheless in relationship with the standardized” (Star, 1991, p. 39). This careful usefulness comes first and above all, from a body or, rather from a cultivated sensitivity to bodying work—the work bodies do to carry, question, hate, define, feel, and organize around MS—and the embodied results of this work. Such usefulness is a trace of being moved or not by an ‘other’ body, with care for the resources it takes to stay engaged. The careful usefulness which Alexandra B brings to our attention ‘unsettles’ (Murphy, 2015) Oleg L’s warning that “people will lie if we don’t provide immediate relief in workload” and helps to understand Olga M’s confession that working in a patient organization “kills”. Careful usefulness requires tuning into the body within a specific ecology, that is, tuning into ‘middling’ and the process through which a body is acquired in a given situation of a patient movement; thus asking “how much it costs, and who pays, for some to be modest witnesses in a regime of knowledge-production while others get to watch” (Haraway, 2004: 240).

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Alexandra B explains that although she never says “no” to the meetings with enthusiasts, she is very cautious in really giving these meetings her full attention until she is convinced of their ‘chronic’ usefulness in an embodied sense—that is, sensing it from her body. This is not a matter of cost-benefit calculation but a matter of care as a practice of cultivating a sensitivity to moving attention which maintains some and excludes other relations (Martin et al., 2015; Murphy, 2015; Puig de la Bellacasa, 2017). “People do not die from MS—they die because their liver has failed, or some other organ. But not from MS (…). It is important to understand [this], because then you stop following a blind fight with MS and start caring for your body” (Alexandra B., June 2018). Alexandra B is acutely aware of and works with finite resources, carefully choosing where to direct her attention and accessibility, similar to Natalia Z’s decision to leave her vice-president position. The two women demonstrate that engagement from a body comes from a body tired from living with MS and sometimes falling out of work due to exacerbations, emotional tiredness to hear MS stories, lack of time or money. Usefulness here is a back-andforth movement inbetween—requiring chronic care through which ‘they’ and ‘us’ become entangled and attentive to ‘middling’. This is a different mode of engaging from that when ‘we assure them to trust us’, when ‘they don’t care about our research’, and when ‘they don’t have time for it’. Let us turn to a distinct facet of the such embodied usefulness—pausing.

On Pausing The story of Natalia Z, a former Moscow MS Society vice-president and a community leader living with multiple sclerosis for more than 35 years, introduced in the beginning of this chapter, teaches that sometimes careful engagements require suspending action and tuning into what the bodies do without doing much—what we call pausing. We have already touched upon this when speaking of careful usefulness. Let us further elaborate on pausing, demonstrating how bodying with Natalia instantiates in our ethnographic engagements. Natalia is one of the main patients-activists of the Moscow MS Society, the founder of the MS yoga practice club and a patient leader in a research project on the effects of yoga for rehabilitation after MS exacerbations. After her first class of rehabilitative MS yoga, she “came home and cried. How could I arrive to neglect my body so much? How could I become so reckless with my own wellbeing?” (June 2018). The reason was Natalia’s federal usefulness as a vice-president of the Moscow MSS: “I was doing so much public work and never linking it with the imperative work of maintaining my wellbeing: caring for my body, or spending time with my grandson, or…”. After passing the official position of the vice-presidency to Alexandra B, Natalia’s position is no longer that of federal usefulness—strategic and disembodied—but that of careful usefulness, being useful in a particular situation, for particular bodies, and with a particular surplus of resources. What we learn from Natalia is that careful usefulness requires sensitivity and practice of a distinct facet of

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bodying work—that of pausing: that is, taking breaks whenever needed, acting whenever the time is ‘good’ and ‘feels right’, and taking the time to establish relationships ‘from a body’ with others, things and activities. Pausing is thereby also about taking/making the space and time to tune into ‘middling’ through attending to the body. Otherwise, and to continuously reconsider—with care— one’s engagements to sense the movement of acquiring a body as an ecology of processes and practices; that is, always in relation to something and someone ‘other’. To further appreciate pausing as a crucial facet of the practice of careful engagement from a body, we want to draw on the “Mover’s Guide to Standing Still” by Erin Manning (2019) where she writes: Everyone sways. You may think you’re standing still, but actually you’re drifting, shifting slightly to the left, your ankle twitching as your weight moves to the ball of your foot, your knee bending slightly as you take in a breath (…). Standing still requires constant correction. (…) Stillness is always on its way to movement. When you stand still, you don’t feel the “how” of movement stilling unless you’re asked to feel the stillness. Then you find you can’t stop thinking about how you’re moving. (43).

It is this practice of feeling stillness ‘on the way to movement’, this practice of pausing that offers the possibility to transform engagements. Constant correction while pausing is transformative, actively recomposing the middling with care—the middling in activist engagements, such as Natalia’s position, and in ethnographic engagements, such as our ethnographic work. In the instances of pausing, of listening to stories without proposing “immediate relief”, we may get closer to careful usefulness—to the embodied attention to how ‘we’ and ‘they’, and the worlding through which ‘we’ and ‘they’ emerge, get or could be transformed in ethnographic encounters. This brings us closer to the transformative effect of pausing as a form of being “in the action, (…) finite and dirty, not transcendent and clean” (Haraway, 2004: 236). Learning from and with Natalia, we find that it is in pausing not from but with ethnographic techniques and research questions that careful engaging becomes possible. Pausing to do re-habilitative yoga, for example; or to eat together or alone, to fall sick and take recovery tips; pausing to celebrate an international MS day, to see some dangerous (and hardly legal) practices of medication exchange without logging them into the field notes. Pausing with MS bodies and stories allowed us attending to the middling and to reconcile federal usefulness (like translating an international meeting in London in 2017) with care for the invisible and neglected. Such pausing instantiates through moments of stillness which allow for attending from a body to the “motile moving/being moved by an ‘other’” (JerakZuiderent, 2020). Pausing, as a moment of drifting while staying still, offers an opportunity for attending to moving and being moved by bodies (in the broadest sense) in order to acknowledge the transformational aspect of it. Consider Alex’s conversation with Serezsha, a young man with MS accompanied by his mother at one of the events organised by the Moscow MS Society: Serezsha: I am actually normal. Only, several years ago there was an exacerbation, and they did not catch it on time. So here you see—I have staccato speech, my arm and my leg are weak. You know what it means to have an exacerbation, right? [I nod]

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Serezsha’s mother: Of course, she does. Everybody here does. [in a low voice] But it’s impossible to really understand unless you feel it through your muscles and bones. Serezsha: And you can tan? me: Yes, I can [one more time putting down the wave of shame coming somewhere from the bottom of my stomach]. Serezsha: I can’t. I faint—but tanning is nice. [pausing and smiling] I am really glad you can do it. Serezsha: I was on Kopakson [disease modifying treatment]—you know it, right? No exacerbations. And recently they switched me to a new one, and here it is (…) Could not move myself. Always had to be supported, by the wall or by somebody. I was in the 11th [City Hospital №11]. And then in the 24th. You know it? me: Yes, of course. I recently had health problems, and I was put to surgery in the 24th. Serezsha: Oh no! You’d better not get sick! Stay healthy! Naira: Oh hello! You are here too! [we hug and kiss on the cheeks] Tatiana: You know each other? me: Yes, we have met during the MS Day celebration. an unknown man on a wheelchair: What are you talking about? There isn’t such a day! [I pause, puzzled] Tatiana: [laughing] We are all healthy here. There isn’t such an illness as MS. So, there cannot be an MS Day. (Fieldnotes, June 2018). (Endaltseva, 2020).

Serezsha’s story of bodying work opens a moment of stillness. In this moment there is a potential of sensing how bodies are nodes of relational processes. How they move/are being moved by an ‘other’; how they become always in co-constellation with the environmentality that they are part of and hold the possibility to transform and get transformed. The pausing work here includes the memories of suntan appearing on the skin as Serezsha speaks, Serezsha’s embodied knowledge of being “actually normal” and having exacerbations, the subtle itching of Alex’s surgery scars, the lump of shame in the stomach and an ‘impossibility to really understand’ how MS exacerbations feel unless “you feel it through your muscles and bones”. Strangely enough, this pausing for doing the bodying work is pausing from the MS itself, as “we are all healthy here”, in this particular time of the Moscow MS Society community event. Serezsha felt “really happy” that Alex can tan; Alex felt happy that Serezsha can walk and can speak again, even with staccato. In these embodied relations “there isn’t such an illness as MS”. This instance of pausing work also included pausing from research questions and observations, allowing bodies to sense, feel, remember, and imagine that “there is no such illness as MS”. The work of pausing renders visible the embodied sensations of this collective being healthy, crafting a particular form of usefulness and engagement, which brings us closer to chronic care. Pausing doesn’t mean absence of movement; it implies sense-full suspension of acting. It is a particular mode of movement, which does not impose, provoke, or analyse the situation; but

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rather refines the resources and energy which drive the movement. Pausing is turning attention inwards and locating the senses and micro-movements which make up our embodiment (Endaltseva & Jerak-Zuiderent, 2021).

In and through such pausing there is space for the transformative effect of embodied careful engagements that is deeply respecting the difference of an ‘other’ while still being able to move on together.

Conclusion In this chapter, we were asking what does bodying do, or, rather, how bodies are done, in careful engagements. Our questions were closely linked with different modalities of being ‘useful’ which circulate within the Russian patient movements. How does ‘usefulness’ manifest within and inbetween the bodies in ethnographic work, and for whom is it performed for? Inspired by the people we encountered through our ethnographic research, we learned how bodying work matters for scholarly accounts and careful engagements to emerge. Bodying work, and its distinct facet of pausing, allow for a particular slow form of engagement which is never too late as it relates to timeless and chronic questions and projects. In our case these chronic questions included not only the invisible maintenance work within the RuMSS but also frictions of doing ethnographic work within it, like Igor’s comment on Alex’s note taking in September 2017. We believe that the work of pausing with MS made these tensions generative for ‘us’ and ‘them’ albeit in different ways, transforming the perception of ethnographic work for all—the maintainers, the management of the RuMSS and ‘us’. Let us conclude by pausing at and with Alex’s fieldnotes from May 2019, during the international conference ‘Social Sciences and Health Innovations: Multiplicities’: We sit at the dinner table, next to my colleague who takes care of the collective bill, passed official “end of dinner” time. We are the only three of us left out of the group of keynote speakers and organizers dining together on the first day of the conference. Yan [Yan Vlasov, the president of the RuMSS] observes me pulling out a notebook, nods in agreement with this action and shares his reflections on the work within a patient organization. These reflections did not appear in the official facts and figures of his morning presentation. Yan says that this conference format is new and fresh for a traditional medical academic taste in Russia, and he is pleasantly surprised. He mentions that, perhaps, this mesh of social scientists, medical professionals, and community leaders—Russian and foreign—happening on the academic turf, beyond the reach of the international political scandals (for now) signifies important systemic shifts. Yan reflects that although only now all the sides are finding the language to communicate with each other, the very movement towards this invites rethinking health matters beyond biomedicine. This is what Yan has been advocating, although differently, throughout his activist career. Yan reflects that just as the patient conferences in Russia once grew into the discussion platforms for collaboration between the governmental, business, and professional medical sectors, social scientists might be touching on some systemic shifts in health-related thinking (Endaltseva, 2020: 85-86)

—and, we would add, be touched and transformed by these shifts themselves.

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Alexandra Endaltseva is a PhD in Social Sciences & Health (CEMS, EHESS, France jointly with Linköping University, Sweden) and a member of CERTOP (Research Centre on Work, Organization, Power), UMR-CNRS 5044 (France). Her academic path followed between the United States, Russia, Sweden and France. After defending her PhD dissertation on the work within patient organizations in Russia (on the basis of the Russian Multiple Sclerosis Society), she joined CERTOP to study articulation of lay knowledge and public health recommendations in food practices in France. Her work is interdisciplinary-oriented and inspired by the science and technology studies (STS), the anthropology of the body and the socio-anthropology of health and food. Her research practice is highly influenced by feminist commitment to care, the “science for and with society” approach, and somatic experiments. Her current research interests are composed around 3 axes: lay and community knowledge; invisible work and care labor through the feminist perspective; care as methodological principle (innovative and engaged methodologies; participatory science; research ethics). Sonja Jerak-Zuiderent is an Assistant Professor of Social Studies of Science, Technology and Care at the Department of Ethics, Law and Humanities at the Amsterdam University Medical Centres. Her research centres around a two-fold question: first, on how ‘good care’ gets shaped in healthcare and the sciences broadly defined; second, on how ‘good care’ is accounted for. She studies this with a particular focus on the everyday and mundane work of things and people; work that gets easily neglected and marginalised. Sonja’s work is grounded in ethnographic research and attentive to how people, through their everyday ethico-political doings, find generative ways, to live, respectfully, in difference together in more-than-human worlds. She has published on accountability devices in health care, like guidelines and performance indicators, on social studies of patient safety, on ‘good science’ practices within and across disciplines, on embedding spiritual care closer to home, most recently she is developing publications on how to prevent health inequalities in the Netherlands through transforming practices of reproductive public health and she continues to study and learn from trans*care practices in Latin America.