Refraction of participation
What does it mean to participate? What does participation do?
The etymology of ‘participation’ traces from the Latin word participationem, which translates as ‘sharing, partaking, make partaker of’. The word is composed of the Latin pars (a part, piece, division), and the stem capere (to take). To participate is thus to take part.
We could leave it at that. But when we think with something, how much history do we use? Going yet further back, the word capere, part of participationem, in turn stems from the Proto-Indo-European (PIE) root kap-, meaning ‘to grasp’. Pars comes from the PIE root pere-, meaning ‘to grant, allot’ (and reciprocally, ‘to get in return’). The word participationem thus encompasses both the individual initiative and a collective offer, acceptance or an invitation to participate. We could say that participation links an individual to a collective through an activity that the individual undertakes, thus shaping this collective.
We take the openness of etymology as an invitation to study participation as a series of questions: How are individuals invited into – or accepted as part of – a collective that they also help to bring into being? What can we learn from situations in which possibilities for participation change, as in daily life with dementia? And what can stories about dementia tell us about participation? Participation, we will suggest, becomes something different when dementia is at stake.
Thinking participation with dementia
In Annelieke’s story, care worker Robin tells Annelieke that Mr Moran “is a typical case of dementia”. By saying this, Robin makes Mr Moran part of a collective of people – namely people with dementia. For Robin, this collective shares specific characteristics and ways of being. If we zoom in on the exemplary characteristic of the case of dementia he is referring to, it comprises a statement about the relationship between ‘repeated utterances’ and reality.
In Robin’s assessment of Mr Moran, there is no self-evident correspondence between utterance and reality: the relationship should be deciphered as a pathological one. Mr. Moran’s repeated utterances of pain come from a medical condition wherein what he says does not refer to a state of the world. The utterances are not a symptom of pain, but of dementia. As there seem to be no physical causes for pain, care worker Robin can interpret the utterance “I am in pain” as something that is “in his head” rather than in his body.
Robin also brings up Mr Moran’s biography as a way of understanding these utterances. He points out to Annelieke that Mr Moran, in his heyday, was an admired Surinamese musician. By contrast, in this new and institutional setting, Mr Moran suffers from the loss of this admiration and recognition. In this story, it is Mr Moran’s biography that explains what the utterances of pain mean, and why he does what he does; his utterances become a token of his loss of social esteem.
There is another understanding of Mr Moran’s expressions of pain: Mr Moran is not very grateful. Robin says that only once did he get a thank you from Mr Moran, and this demanded 45 minutes of doing exactly what he asked. The care home setting requires Robin to provide care work efficiently, which often means that he has to care without receiving gratitude from those he cares for. He may even have to bear their negative responses. The utterance “I am in pain” he thus takes to signify a complaint about his – inevitably and necessarily hasty – work.
In all these understandings, the part where Mr Moran could actually be in pain has been tested and tried – and has generally been abandoned. His carers take his cries of pain as a request for a different way of participating.
The story shows how particular relationships are made important, while others are rendered less significant, or even invisible. In one understanding of the situation, pain is disconnected from physical suffering, in another, pain refers to social loss, while in the final case, complaints of pain refer to the institutional level, determined by current staffing levels and time plans.
Dementia is often imagined as the loss of the capacity and ability to participate at all, due to a retreat into one’s inner world, to a life unshared and surrealistic, inaccessible to others. But this is not what the situation with Robin and Mr Moran shows. Robin relates to Mr Moran’s pain in different ways, in relation to medical, biographical and institutional information. There are shared and unshared worlds at the same time. Certain relationships are foregrounded, others backgrounded, giving rise to shared worlds and unshared worlds simultaneously. The ways in which Mr Moran may participate in these worlds differ enormously.
Thinking participation as being granted a part and taking part
In Annekatrin’s story about Mira giving birth, midwife Jana tries to keep out the obstetrical markers that Mira’s sister brings into the situation. Rather than letting things evolve as they go, the sister asks technical questions about the dilatation of the cervix and the breaking of waters – questions that would demand a physical examination. We could say that the sister is seeking a part in the conversation by using terms she thinks Jana can relate to as a midwife. Perhaps, but it is also relevant that Jana is frustrated by these questions. She prefers to let things evolve, for which a more technical approach needs to be downplayed. In this approach, Jana and Mira together emerge as competent readers of and supporters of Mira’s body giving birth.
This story also makes apparent how particular objects may facilitate particular kinds of participation over others: the warm bath helps Mira and midwife Jana to enact an approach to giving birth that is preferred over vaginal examination. Within this approach, it is more important to relax and let things evolve instead of foregrounding medical parameters that would define if and how the birthing process is progressing.
In all of the stories in this collection, those cared for do participate, but in every story this participation takes shape in specific ways. The type of individual involved is the result of interactions with particular objects, words and other people, of particular forms of participation. These interactions create specific collectives that allow for specific ways of contributing or being accepted.
In Maarten’s story about Deep Brain Stimulation (DBS) as a treatment for severe Obsessive-Compulsive Disorder (OCD), we can see this interaction between individual and environment very clearly. Maarten narrates a particular patient’s problems in terms of possibilities to respond to what the environment offers. These possibilities are greatly reduced for severe OCD patients, as they have only one particular way of reacting to a highly complex set of invitations. An effect of the DBS therapy is the emergence of novel possibilities to participate in newly opened life worlds: this is the good that is intended to be achieved. But participation is also present in other ways. In order to be able to calibrate the brain stimulation, the doctors need to participate quite a bit in the life of their patients. In order to assess the effect of the brain stimulation, the doctors engage their patients in an active dialogue to see how they participate in a conversation. They may even visit them at home – here, together with Maarten.
Francesco’s policemen are also, but in a different way than Maarten’s interlocutors, involuntarily involved in something: the drunken policeman voices loudly that he does not want to join the night patrol of the private security firm Maximum Security. James, the Maximum Security guard, insinuates that the policemen’s participation in general is neither necessary nor desired; and the officer who eventually takes a seat in the car does not take part in the night patrol – he just wants to be dropped off. He thereby makes the patrol take part in his getting home. There is also another party involved: the neighbourhood association that pays for the policemen to join the private security guards. The association is attempting to enhance security for the neighbourhood by making security guards and policemen work together. Who is allowed to, wants to, and does in fact participate can be the outcome of tense negotiations, however, and the outcomes are not always to everybody’s liking.
All four stories stage different forms of non-participation. The frictions between individuals and invitations for – or dismissals of – participation are crucial to understand the phenomenon of participation better. If participation is practised relationality – linking individuals to a collective through particular acts that perform this collective – it becomes important to look at how particular claims, utterances and doings can be made (il)legitimate, (in)authentic or (in)admissible.
Where Mr Moran could be said to participate when he says that he is in pain, Henrik’s piece illustrates a kind of participation that is recognized, but still feels apart. In understanding brain damage as relational and participatory, he describes how suddenly occurring impairments alter the connection between the personal and the collective. Henrik’s auto-ethnography explores three ways in which brain damage may change participatory engagement: ‘nullification’, ‘displacement’ and ‘distortion’. These are relational concepts that highlight a qualitative change in the relationships themselves. Not only does a person’s cognitive capacities impact his or her grasp of social life, but they reposition the afflicted person within the relational landscape in which his or her life is set.
Bubbles of participation
The simultaneity of partaking but staying apart brings the image of foam to mind. Foam can be seen as a substance made up of ‘co-isolated associations’ (Sloterdijk, 2004: 255 in Borch, 2009: 225), or ‘connected isolations’ (Mayne, 2004: 255, 302). Without care for participation, people suffering from dementia may become cut off and thus withdraw into an unshared inner world; they may get trapped in their own bubble. Yet connected isolations demonstrate that connectivity and isolation do not exclude one another, but are variously bubbled into each other. Indeed, the metaphor of foam helps us to centre inter-dependence. Every bubble is simultaneously a dependent sphere of tension as well as a foundational component of the stability of the larger structure of which it is a constituent and contingent part. Foam bubbles obtain their boundaries through adjacent spheres, and thus a sphere is a space of being-with, as its existence can only be upheld by the multiplicity in which it is embedded.
The bubble structure of foam creates a space of shared conditionality and fragility for its bubbles. Spheres in foam are co-responsible. They are dependent on the sheltering and tension that each provides to the others, and hence to the larger structure. If one bubble bursts, the surrounding bubbles lose their internal tension, leading to a larger state of collapse. When projected onto social situations, individuals and life-worlds become fragile instantiations of co-dependent orders.
Foam also helps us to think about, rather than pin down, what participation ‘is’ and ‘is not’. There is a frailty in foam, but there is also a utopian moment in the thinking of social connections as bubbles. Attachment is always a possibility. In order for bubbles to share walls, to become foam, they have to attach. There is a mutuality in this connection. Invitations must be made and accepted. The accepting may imply a new invitation, on top of the first.
The foam of the stories
What questions remain unasked if we stick to thinking participation through bubbles? The metaphor is better at articulating tenuousness than dominance. In the connection of bubbles, there can be no dominant party that orders the other bubbles around. Foam works as an organisation only because of the mutuality that is at work when bubbles make themselves available to connect with other bubbles. Both stable and hierarchical relationships, then, are difficult to analyse through bubble metaphors. Similarly, more privileged relationships between bubbles are difficult to grasp. People with dementia may have stable relations to objects such as their handbag (Twigg and Buse 2014), and a friendship between particular bubbles that goes deeper than the friendship with the rest is hard to comprehend. By the same token, conflictual relationships are hard to think in terms of bubbles; for instance, when the children of people with dementia feel a breach in their relationship with their parents. For ethnographers, it may also be hard to see how foam may be open to outsiders. Might outsiders merely risk pinching existing bubbles, or is there a way to fold in foreign elements?
Nobody would dare to be against participation and inclusiveness.Yet we want to end with a word of caution. Current trends that hint towards a primacy of participation in old age (e.g. of active ageing) may be oppressive in their own way (e.g. Hvenegaard Mikkelsen, 2017). Without wanting to criticise, in general terms, attempts to include people with dementia into collectives and collective activities, we do want to point to what we have come to think of as ‘the tyranny of the social’ – the obligation to be part of something. In the face of ever-inclusive collectives, resignation and withdrawal may come to be defined as a symptom of dementia, and therewith could become increasingly illegible as a (valid) act in itself.
 The reference is to Donna Haraway: “They give rise to some worlds in progress but not others” (Haraway 1991, 1997 in Moser 2008:99). See also Pols (2016) for the ways in which social spaces are created through social and material relationships.
Borch, C. (2008). ‘Organizational Atmospheres: Foam, Affect and Architecture’. Organisation. 17(2): 223-241.
Buse, C. & Twigg, J. (2014). ‘Women with dementia and their handbags: Negotiating identity, privacy and ‘home’ through material culture’. Journal of Aging Studies. 30: 14-22.
Haraway, D. (1991). Simians, Cyborgs, and Women: The Reinvention of Nature. London: Free Association Books.
— (1997). Modest Witness@Second Millenium Female Man © Meets Oncomouse™: Feminism and Technoscience. New York: Routledge.
Hvenegaard Mikkelsen, H. (2017). ‘Never too late for pleasure: Aging, neoliberalism and the politics of potentiality in Denmark’. American Ethnologist 44(4): 646-656.
Mayne, T. (1993). Connected Isolation. Retrieved from
Moser, I. (2008). ‘Making Alzheimer’s disease matter. Enacting, interfering and doing politics of nature’. Geoforum 39: 98-110.
Pols, J. (2016). ‘Analyzing Social Spaces: Relational Citizenship for Patients Leaving Mental Health Care Institutions’. Medical Anthropology 35(2): 177-92.
Sloterdijk, P. (2004). Sphären III: Schäume: Plurale Sphärologie. Frankfurt am Main: Suhrkamp.
Jeannette Pols is appointed as Socrates professor ‘Social Theory, Humanism and Materialities’ at the Department of Anthropology, program ‘Health, Care and the Body’, at the University of Amsterdam. She is Associate Professor and Principal investigator at the section of Medical Ethics of the Academic Medical Centre in Amsterdam. In 2017 Pols was appointed as a member of the Advisory Board for the Government on health care: RVS (Raad voor Volksgezondheid & Samenleving). The core of Pols’ research is empirical ethics, which studies ‘normativity in practice’. She formulated three research lines for the Socrates chair, to which she was appointed in 2012: 1) the analysis of ethical and aesthetic values in sociomaterial care practices; 2) the articulation of actual and preferable subject positions of people with chronic disease and other technology users; and 3) conceptualizing practical knowledge of patients and their carergivers.