A Posthumanist Perspective on Dementia

CHAPTER 2 A Posthumanist Perspective on Dementia Abstract This chapter introduces those posthuman ideas that we have found most useful in our research with people with dementia. These include: ‘thing power’, ‘intra-activity’, ‘agentic assemblages’, ‘affinity’, ‘trans-corporeality’, ‘submersion’ and ‘potentia’. We show how we have used them, drawing on ‘data events’ from our studies. The methodological issues raised by posthumanism are also discussed and our own practice critiqued. The chapter also acknowledges that posthumanism does have limitations, for example, in addressing the classed structure of dementia care. We discuss how a posthuman ethics has been addressed and present a posthuman ethics of rights for working with people with dementia. This suggests that lifelong learning for people with dementia is not a luxury, but a right. Keywords Posthumanism • Agentic assemblages • Intra-activity • Ethics • Dementia IntroductIon Posthumanism provides the theoretical and methodological frame for our studies and for this book. There are others who have used posthumanism to explore dementia, particularly Jenkins (2016, 2017) from a sociological perspective and Allegranti (2013) in an arts context, but none that we © The Author(s) 2020 J. Quinn, C. Blandon, Lifelong Learning and Dementia, Palgrave Studies in Adult Education and Lifelong Learning, https://doi.org/10.1007/978-3-030-42231-8_2 23 24 J. QUINN AND C. BLANDON know of in education and lifelong learning. Both Jenkins and Allegranti have focused on people with early onset dementia and their families, whilst our research was conducted with older people in the very late stages of the disease. There are multiple forms of posthuman thought and its theoretical world proliferates exponentially. It is a mistake to position it as radically new, as it builds on decades of feminist and queer theory and emphasises factors that have always been present in indigenous and non-Western thought. In this chapter there is no attempt to provide an overview of posthumanism, rather an exploration of the ideas and approaches that we have found most useful and why. Rather than seeing people with dementia as less than human or formerly human, we show how a posthuman perspective validates them as posthuman, post-verbal: a new and potentially productive form of being. LIvIng In a Posthuman/humanIst EPoch A superficial sense that we are living in a posthuman epoch has gained ground and surfaces in popular culture, particularly in science fiction. Multiple factors such as artificial intelligence, body modifications or transgender awareness destabilise any sense of ‘the human’ as bounded, immutable or transcendent. In a digital landscape the enmeshing of person and machine has become normalised. Jenkins even argues that with the rapid development of technology and the cultural shifts associated with digital natives, in future dementia care might happily be trusted to machines and algorithms (Jenkins 2017, p. 1494). Nevertheless, in the West and Western-influenced countries dominant modes of understanding our world remain humanist. Neoliberalism, with its emphasis on individualism, competition, consumerism and marketisation, very much depends on the idea/illusion of the individual human at the centre making things happen with will, choice and self-determination. Moreover, progressive conceptions of democracy, freedom and justice are also predominantly humanist. An easy shedding of humanism in search of a pure posthumanism is not possible. Humanism and posthumanism collide and co-mingle; it is not possible to disentangle them: ‘we are already in the middle of the posthuman condition, its forces already entangled in the humanist fibre of our lives and thinking’ (Taylor 2016, p. 7). This means that although posthumanism offers new possibilities, in Western 2 A POSTHUMANIST PERSPECTIVE ON DEMENTIA 25 contexts the person with dementia is still very much constrained by the humanist assumptions of others and by the structures that emerge from that worldview. chaLLEngIng thE ‘human’ It is the posthuman challenge to the normalisation and naturalisation of ‘the human’ that is most fruitful when considering people with dementia. Dementia breaks the unquestioned mould of the self-contained and rational human. Jenkins argues that moving from a belief in a coherent narrative of the self can promote equality in dementia care and promote ‘people living with dementia as active facilitators of care in eternal process of becoming self’ (Jenkins 2014, p. 17). We argue that posthumanism helps us to move beyond any idea of self, even the kind of self envisaged by Jenkins. In posthumanism, the unit of experience is not the human but the ‘agentic assemblage’ (Bennett 2010) and reality does not pre-exist but is perpetually reconstituted through the ‘intra-activity’ of matter (Barad 2007). Consequently, the epistemological and ontological implications are huge. As discussed in Chap. 1, a humanist ontology does not have space for people with dementia, except as carriers of loss. Posthuman modes of thinking can provide a more productive way of entering and understanding their worlds. Rather than focusing on the inviolate individual who possesses a ‘self’ that she or he can communicate through words, posthuman theory moves away from the articulate human to focus on acts and bodies (Braidotti 2013), on materiality (Barad 2007) and the agency of things (Bennett 2010). It validates and explores the significance of silence (Mazzei 2016) and focuses closely on space and the visual in its methodology (Taylor and Hughes 2016). As such it provides a positive and hopeful perspective on dementia. Working from this perspective validated our research participants and recognised other forms of living and learning that were not about speech or rationality but were equally important. According to Braidotti, humanism has a restricted notion of what counts as human; it reduces the others, ‘the different’, to a less than human status of ‘disposable bodies’ (2013, p. 15). The person with dementia is the ultimate ‘disposable body’ as s/he seems to have no place in the world. In this chapter we show how posthuman theories help to rescue and value people with dementia, and we sometimes draw on fiction to elucidate these ideas. 26 J. QUINN AND C. BLANDON Posthuman thEorIEs Thing Power and Vibrant Matter When I can’t sleep, I think about the transparent glass box that is still stirring with life even in the darkness of night. That pristine aquarium is still operating like clockwork. As I visualise the scene, the sounds of the store reverberate in my eardrums and lull me to sleep. (Murata, Convenience Store Woman, 2019, p. 21) One of the most useful concepts for our research has been Bennett’s ‘thing power’, the notion that objects are not inert but make things happen. ‘Things too, are vital players in the world’ (Bennet 2010, p. 4). This is clearly demonstrated in the prize-winning novel Convenience Store Woman, where the shop comes to constitute the body and being of the narrator who works there. On numerous occasions in our research we saw how musical instruments exerted power, changed dynamics and prompted movement, not only for participants but also for ourselves: The drummer was playing this beat that sounded like an alarm clock and he did it constantly, and it really annoyed me … I found myself getting restless and impatient, I couldn’t concentrate on my observations … the cacophony of the music (as it seemed to me) being played made me want to get out of the room. (Fieldnotes, Observations) Whilst we might be used to the concept of the fetish object exerting an influence on humans, Bennett alerts us to the vitality of all objects, even those identified as waste. On a morning walk she observes: One large men’s plastic work glove. One dense mat of oak pollen. One unblemished dead rat. One white plastic bottle cap. One smooth stick of wood. … I caught a glimpse of an energetic vitality inside each of those things, things that I generally conceived as inert. (Bennett 2010, p. 4–5). Bennett focuses on what she terms ‘vibrant matter’. Her argument is that both humans and non-human animals and matter all share a vibrant materiality and are teeming with life. A potent example of thing power in 2 A POSTHUMANIST PERSPECTIVE ON DEMENTIA 27 action is Emma Renold’s (2019) ‘ruler skirt’, created as part of her research on sexual abuse in schools. Renold then wore it in numerous places and spaces as a message to policy makers and practitioners: its sound a powerful warning, its reading requiring a respectful bowing down. In a humanist ontology, things are kept very much separate from humans; they do not occupy the same plane of existence. In contrast, the relations that people with dementia have with things is normally very much perceived as ‘matter out of place’, in that it disrupts this firm division. In our research we saw them try to eat musical instruments, physically attach themselves to soft furry objects, paint hands instead of paper or help themselves freely to any belongings they find on their wanderings. Surprising conjunctions and intensities emerge where separations between body and external matter collapse: Jane then moved to painting my hand with glue so I changed and got the paints so she could actually see the colour so she painted my hand and she really, really enjoyed it, really got into it and you could see her really working away at, at the different crevices in my hand and it was a really amazing experience as she became really relaxed very focused. (Helen, support care worker, interview) In neglectful contexts the surprising approach to objects may lead residential homes to assume that they can be indiscriminate in their dealings with people with dementia and things: It was seeing H (someone for whom appearance used to be of paramount importance) dressed in someone else’s mini skirt and top that finally convinced me to move her to another home, even though she was quite happy herself and talking gaily on the telephone. I knew it would have mattered terribly to her once, even though now it didn’t at all. Who was right? (JQ diary) Such anxiety about the right relations with objects is not shared by people with dementia. In a sense they enact a posthuman ‘flat ontology’ rather than a humanist hierarchical one. For people with dementia things can matter tremendously (much more than humans) or not at all, and considerations of ownership, monetary value or usefulness do not seem to apply. Instead, there is a direct engagement with matter. Sociological research on ageing, including dementia, has taken a material turn with more attention being paid to space and to objects. Buse and Twigg (2014), 28 J. QUINN AND C. BLANDON for example, conducted an interesting study into dementia and dress, including a focus on women with dementia and their handbags. This chimes with Beyond Words where we observed a woman with dementia carrying a suitcase everywhere she went, and it also evokes a powerful personal memory: I vividly remember a woman in H’s home who always clasped a handbag to her. ‘Look at this bag,’ she said pleasantly. ‘It’s full of blood.’ (JQ, diary) However, rather than seeing the handbag as such a macabre, uncanny object, Buse and Twigg explored them in terms of how they preserved a sense of identity and home. With a posthuman lens we see things differently, where the object has a power in and of itself and is not dependent on associations with ‘the self’. Jenkins is interested in how a person with dementia can best be understood in a digital age. He draws on Haraway’s (1991) vision of the Cyborg, but rather develops the concept of a ‘symbiont’: As a person, a symbiont is a being that has achieved a state of mutually beneficial co-existence with other entities…they are not autonomous individuals but are defined through their mutual interdependence with other organic and non-organic beings. (Jenkins 2017, p. 1492) This is interesting but still focuses attention on the person with dementia as a certain sort of particularised entity. We have found Barad’s (2007) theory of ‘intra-activity’ more suggestive for our studies, as it posits that only at the moment of intra-activity do all forms of matter come into existence: and this includes the person with dementia. Intra-activity and Agentic Assemblages: Sparks of Life For Karen Barad the locus of attention is not on the individual, whether symbiont or human, but on the phenomena generated when different forms of matter are brought together. ‘Matter is agentive and intra-activegenerative not merely in the sense of bringing new things into the world but in the sense of bringing forth new worlds’ (Barad 2007, p. 170). The person with dementia is not a different form of matter than other humans, just one that exposes this process of intra-activity more clearly. The focus is not on words but on moments of communication, sparks of new life. 2 A POSTHUMANIST PERSPECTIVE ON DEMENTIA 29 The notion of ‘new worlds’ echoes with Biesta’s ‘new beginnings’ (2015) and Deleuze and Guattari’s ‘becomings’ (1984) as a chorus of possibilities that we follow in this book. So, a sparkly bangle does not pre-exist the moment that the person with dementia slips it on their wrist and neither does the person. She brings it into being as something pleasurable to flash and to wear and the bangle brings her into being as the wearer of the bangle who is happy and excited to wear it. Moreover, such matter cannot be understood in isolation but as part of what Bennett calls an ‘agentic assemblage’: Assemblages are ad hoc groupings of diverse elements, of vibrant materials of all sorts. Assemblages are living, throbbing confederations that are able to function despite the persistent presence of energies that confound them from within … Assemblages are not governed by one central head … Each member and proto-member of the assemblage has a certain vital force … but there is also … an agency of the assemblage. (Bennett 2010, p. 23–24). Thus, instead of the isolated individual who speaks, the site of meaning is an assemblage that may include the human and may include words, but within which the human or the word may not be the most important element. Instead of positioning some matter as active and some as inert, a posthuman perspective sees and respects them all as having forms of agency. It is useful to see the condition of dementia through this lens. People with dementia are often positioned, and even in the worst cases, treated, as inert lumps of matter. They are moved into a space of detritus or waste. They are positioned as abject. For Kristeva the abject is something we reflexively flinch from: corpses, refuse or bodily fluids, something that we try to push aside whilst at the same time we cannot escape. ‘It is something rejected from which one does not part, from which one does not protect oneself’ (Kristeva 1982, p. 4). In several instances during project interviews, family members described, with grief, how children or siblings refused to acknowledge or visit their family member because they were no longer a person they could recognise, or indeed an entity worthy of continuing support. In some cases they were openly named as ‘not there’, even ‘dead’, or that the family was enduring what Ken calls ‘a burial without a corpse’. Bennett’s work shows how even material considered waste is ‘vibratory’ (2010, p. 5), teeming with life and having agency in the assemblage and this is salutary in respect of people with dementia. 30 J. QUINN AND C. BLANDON Silence and Bodies: ‘How Her Eyes Change’ In the Beyond Words project our focus was on those who do not speak or who have few words that can only be rarely used. An encroaching silence is one of the most challenging aspects of dementia, which seems to leave the person with dementia most alone and families and friends most stricken. She was always surrounded by friends, she always had loads of friends, she was very caring if anybody was upset about anything she would be the first one there at their side and give them a hug and try to comfort them and then bit by bit as obviously dementia began to set in she became more isolated in herself. (Elizabeth, Faye’s sister, interview). Mazzei follows on from other feminist writers such as Lewis (1993) in considering the function and nature of voice and silence in research contexts (see e.g. Mazzei 2007, 2016). Thus she draws attention to the silences that always occur in research interviews or the silences participants choose. She challenges the primacy of words as a mode of communication and with them the notion that they tell us something essential and uniquely personal about the person who speaks them. Moreover, she argues that voice does not belong to the individual but is distributed across the assemblage. Because ‘voice’ cannot be thought as existing separately from the milieu in which it exists, it cannot be thought as emanating ‘from’ an individual person. There is no separate, individual person to which a single voice can be linked—all are entangled. In Deleuze–Guattarian ontology, there is no present, conscious, coherent individual who speaks the truth of her present or her past. (Mazzei 2016, p. 158) Consequently, in our studies we did not need to search for the individual voice or lament its lack but could trace how the participants spoke without words in their entanglements with other matter in the assemblage. Nevertheless, despite her interest in voice, Mazzei does not address those who cannot speak or who struggle to communicate with words. We have not found many studies, including posthuman ones, that do. Those who do not speak are commonly called ‘non-verbal’, but this automatically positions them as deficit, as lacking. Taking a posthuman position where ‘post’ is conceptualised as ‘going beyond’, we have adopted the 2 A POSTHUMANIST PERSPECTIVE ON DEMENTIA 31 term ‘post-verbal’ for our participants (see Quinn and Blandon 2017; Quinn et al. 2019). This helps to capture the sense that there are other ways of being and communicating that move past words. Post-verbal people in our study may have a few words left but they do not use them in expected ways. As Spiro found in their study of singing in dementia, ‘memory for linguistic information contained in songs was superior but not limited to memory of old songs’ (Spiro 2010, p. 893): We noticed definitely in the dementia care home people who struggled to communicate hugely have retained an ability to sing most of the songs. Yes, and sometimes with increasing stimulation with music will then be able to have some sort of conversation and might even communicate using a line of the song. Little music conversation where they are kind of engaging socially but not necessarily in a chit chat way, but they are singing to each other. (Beyond Words, Music Leaders Focus Group 1). Although they longed for their loved ones to speak, members of the networks of intimacy believed these post-verbal people communicate with their eyes and speak with their bodies and create deep emotional connections. Becoming attuned to this can be rewarding and revelatory. … that’s something that Jane teaches me is being able to recognise her emotions from a very, very small window that’s you know maybe how her eyes change. (Helen, support care worker). Normative humanist constructions of the human place the body as subservient to the voice, but post-verbal people can lead us out of that destructive binary to pay full attention to the body and its capacities. Ironically, fiction is sometimes the most productive creative space for thinking beyond words. For example, the collection of stories Pond, with its minute attention to the materiality of everyday life, is a fertile source for thinking through posthuman ideas. English, strictly speaking, is not my first language by the way. I haven’t discovered what my first language is … I don’t think my first language can be written down at all. I’m not sure it can be made external you see. I think it has to stay where it is; simmering in the elastic gloom betwixt my flickering organs. (from Pond by Claire Louise Bennett 2015, p. 45). 32 J. QUINN AND C. BLANDON There is a bodily language that cannot necessarily be understood in spoken or written terms and this is the realm of communication we explored in Beyond Words. affInIty, trans-corPorEaLIty and submErsIon: vIsItIng ‘thE bottom of thE ocEan’ As previously discussed, a humanist ontology places the human at the centre and sees each human as a bounded individual with their own unique selfhood. A fixed and integral identity is perceived as ‘natural’ because this conception of what a person is has been profoundly naturalised by humanism and all its endeavours. Consequently, the person with dementia is positioned as unnatural and aberrant as they have radically changed and do not present a coherent self with safe boundaries. People with dementia reveal the porous relations that exist across different forms of matter. ‘Neither One nor Other, that is what we all are and always have been’ (Haraway 2016, p. 98). For Haraway, who now does not class her work as posthuman, but has influenced and been influenced by posthumanism, affinity has become the key concept in exploring the world and our only chance for survival, as we shall discuss in Chap. 5. Proceeding with a focus on affinities rather than identities is a productive way of entering the landscape of dementia and we explore this further in Chap. 4 and our discussion of the Making Bridges with Music project. Stacey Alaimo charts a further course with her concept of ‘transcorporeality’, which explores the ways in which all forms of matter are enmeshed. ‘The environment is not located somewhere out there but is always the very substance of ourselves’ (Alaimo 2010, p. 4). Using the sea to think with, she invites researchers to ‘follow the submersible’ as ‘submersing ourselves, descending rather than transcending is essential (to recognizing) we dwell within and as part of a dynamic intra-active, emergent material world’ (p. 283). A focus group with volunteers and apprentices at Plymouth Music Zone (PMZ; who had themselves difficulty with speech through brain injury or autism) cast up a sea image that accords well with Alaimo’s work. They face up to the fear caused by seeing the person with dementia as Other and show how submersion can overcome it: As humans like we have a fear of the unknown…everyone I know a lot of people are afraid of the bottom of the ocean as they don’t know what’s down there, and so and so right if you encounter someone with a disability 2 A POSTHUMANIST PERSPECTIVE ON DEMENTIA 33 you have no idea like is there, is there, do they understand you?…so I think it all come from people’s fear and most of the time you just have to put it out there…and then the whole fear just goes. Trying to see people with dementia from above as ‘bounded individuals’ ignores their mystery: instead we need to immerse ourselves in their lives and their ways of being. This has methodological implications in that measurable ‘outcomes’ are not congruent with dementia and we need to change our perspective from linear patterns of progression to focus on intensities and moments. thE PotEntIa: countErIng ‘sEmI-dEPrEssIng EnvIronmEnt’ Rosi Braidotti (2013) sees posthumanism as an affirmative approach and emphasises its capacity to release potentia—energy, resistance, vitality— which will destabilise egotistical humanism and stimulate new and productive forms of social relations. Rather than simply critiquing, she argues that we need to move and act to create something new. As an optimistic, and as some say ‘utopic’ (Ringrose and Renold 2016, p. 221), mode of engaging, potentia helps counter the individualised, even narcissistic, despondency all too easily caused by encounters with dementia. As Peter says about a dementia carers support group: ‘It was all a bit of a nice semi sort of depressing environment where everybody was moaning and groaning about their own troubles’. If not for a faith in potentia, the capacity for lifelong learning amongst people with dementia might be hard to discern. As we shall discuss later in this chapter, Braidotti’s position has its problems, but the uplift potentia provides has made our research studies possible. In Chaps. 3 and 4, where we discuss our research in depth, rather than measurable outcomes we uncover moments of energy and resistance: the ‘new beginnings’ (Biesta 2015) of learning. Posthuman mEthodoLogIEs: ‘thIs has hEr attEntIon’ We are willing to cast a critical eye on our own practices as aspiring posthuman researchers. Methodological debates about how to engage in postqualitative (Lather and St. Pierre 2013), posthuman (Taylor and Hughes 34 J. QUINN AND C. BLANDON 2016) research in education have already revealed both the difficulties and the excitements of this endeavour. As St Pierre (2016, p. 26) asks: ‘why is it so difficult to inquire differently?’ Traditional ways of thinking and working are suffused with the centrality of an interpretable human subject. Giving up qualitative methodologies that rest on claims to know, interpret or represent human activities leads into ‘formlessness, an inbetween-ness, a space that is not easily classified or categorised’ (Holmes 2015, p. 9) which may be either productive or dangerous. This space may be much more comfortable for indigenous researchers to inhabit (see e.g. Tuck and Yang 2014), or for children as researchers (see Somerville 2016) as their assumptions about what is real or meaningful may be much less fixed. For many, as Taylor and Gannon (2018) argue, talking about posthumanism does not always ensure producing posthuman texts or posthuman methodologies. The research we discuss in this book tried to develop a posthuman methodology and was ‘always in response to call from something however non-human it might be’ (Bennett 2010, p. xiii). It paid attention to space, bodies, objects and was alert to what Maclure calls the ‘glow’ of ‘non-propositional’ data ‘that have their ways of making themselves intelligible to us’ (Maclure 2013, p. 661). It was such glowing data that led us to a focus on lifelong learning and dementia. Nevertheless, our projects did not always break free from humanist research practices such as individual interviews and focus groups. In practice posthumanism and humanism were entwined, for example, in the observations in both studies that were ethnographic but paid close attention to matter and relationalities that are often ignored. Chapter 4 discusses in detail how we developed a posthuman observation strategy that we used successfully in both projects. To give one illustration, our strategy included close observation of how people with dementia communicate with their bodies. This is one rather satirical deployment of the body that was observed in Beyond Words: Bodies: Stella was present in this session from the beginning. I can see that she moves her body, slightly but powerfully, to accompany some songs. In some songs she moves her shoulders forcefully and shakes the maracas and then she calms down again. This time, however, two support care workers came over to her and told her that they needed to take her away. They put a belt around her to help her stand up. The support care worker tried several times, Stella seemed not to be co-operating. It seemed that she was making herself heavy on purpose, she did not want to leave the session, and she succeeded. The support care worker gave up and left her there in the session. Stella looked unperturbed. (Observations, fieldwork). 2 A POSTHUMANIST PERSPECTIVE ON DEMENTIA 35 Stella cannot speak but she does have agency. Boyle (2014) does not ally herself with posthumanism, but she argues that current definitions of agency in social science, which depend heavily on rationality and language, need to be revisited and informed by the experience of people with dementia. In her research with five people with severe dementia, Boyle found evidence to suggest that people with dementia demonstrate ‘imaginative agency’ (2014, p. 1140) which might be ‘habituated, embodied or emotional’ (p. 1140). Our approach helped us to pick up these different forms of agency that do not fit normative definitions. It seems that often only lip-service is made to agency when it comes to people with dementia: …you know there is in part of people’s training when you are working with those people who have dementia you always ask ‘Is that all right with you if I do that’… but you sometimes hear people saying that and you think ‘I don’t think I’d feel I had the right to say no, or could say no if I wanted to.’ JQ (laughs) ‘Yes, I know what you mean’. (Ann, Robert’s stepdaughter, interview). J is told ‘No tears’ when she comes back upset from a walk. Tears are disruptive to order in the care home and she is not allowed them. (JQ diary). There is a troubling lack of respect, but people with dementia like Stella do find their own ways to resist, using whatever means available to them. One of the purposes of our longitudinal observations was to pick up on such moments of resistance. In Beyond Words and Making Bridges with Music our research was about art in the sense that one focus was on how music or theatre might benefit our participants. According to Taylor (2016, p. 19), posthuman research in education ‘calls for new ways of finding out; to this end, posthumanist researchers lean towards data collection techniques that include arts-based, visual, sensory, movement, sonic and creative writing practices’. Allegranti (2013) in her posthuman research with young dementia sufferers and their families has used dance and public performance to successful effect. Jenkins et al. (2016) used theatrical vignettes about living with early onset dementia to produce collective power amongst people with dementia. In Beyond Words we included a professional artist in our research team who was experienced in working with marginalised people. Her role was to work with our post-verbal participants to explore their responses to music and allow them to express them through art. Working in collaboration with a music leader, she organised thirty workshops where participants used paints, 36 J. QUINN AND C. BLANDON pastels, clay, shadow play and film in response to music. The emphasis was on process, but products were celebrated and treasured, exhibited at the project conference and taken home at the end of the project. The arts workshops proved a contentious aspect of the research. For some in the music organisation it was the music sessions themselves that showed the impact of music; the art sessions were superfluous. For us it was important that the participants had a specific space within the research where they were engaging explicitly with our research questions, that they were actively included, not simply being observed. The artist found working with people with dementia the most challenging aspect of the research. She raised questions about the ethics of working with people whom she felt could not respond. Nevertheless, pushed to continue and encouraged by the developing findings of the study, she found that the world of dementia was not the blank space she had feared: I decide to try the textiles to see if she has a response. I get out a pile of different textured fabrics including some scarves, I separate some out and show them to her individually. She sits up and moves the chair much nearer the Table. I pick up a scarf with some satin stripes and feel it near her encouraging her to do the same. Jane seems really engaged with the textures and yet doesn’t touch them…As the Music leaders begin to sing Yesterday Jane takes a sparkly scarf and moves it around in her hand. Puts it down and picks it up again. Pulls it nearer to her and holds it above the table. She smooths it out and moves it around. This has her attention. (Artist’s notes, workshop with Jane). The intra-activity of Jane and textile produces something new. If conducted in a humanist context, our research would engage with motivation: what was she thinking when she picked up the scarf, why did she do that? Such speculation would be futile, she can never tell us and if she did why would we assume it to be ‘the truth’? In a posthuman context the focus is on what is created by the ‘doing’, in this case a moment of attention, focus and sensory engagement which tells us there is still intra-activity of Jane and the world around her. We shall illustrate this further in the next chapter. Posthuman EthIcs: a Posthuman EthIcs of rIghts for dEmEntIa How does posthumanism engage with the question of ethics? Although much emphasis is placed in the literature on Barad’s (2007) ethical project, her debates tend to be disembodied. One potential solution is to draw 2 A POSTHUMANIST PERSPECTIVE ON DEMENTIA 37 on Alaimo’s (2010) trans-corporeal ethics. Barad argues that it is ‘our responsibility, to help awaken, to breathe life into ever new possibilities for living justly’ (2007, p. x). Alaimo (2010, p. 22) helps bring this into sharp relief through the matter of toxic bodies: Toxic bodies may provoke material trans-corporeal ethics that turn from the disembodied values and ideals of bounded individuals toward an attention to situated evolving practices that have far-reaching …consequences for multiple peoples, species and ecologies. The toxic bodies Alaimo foregrounds are women with breast cancer, but the person with dementia is also a body made toxic who delivers a relational ethics of rights and responsibilities. For Davies (2018, p. 125) a posthuman ethics entails constantly questioning ‘how are we dis/continuous with the world’s injustices?’ However, it is not only a question of what we ask ourselves, of our responsibilities, but of what is demanded of us. We will outline here what we call a posthuman ethics of rights. Working with people with dementia always raises ethical issues, which are normally presented in terms of human rights and are always problematic as they do not fit the assumed model of the ‘human’. However, an ethical debate need not depend on the notion of ‘human’ rights, but on interdependency of all forms of matter; nor need an ethical position on people with dementia rely on their past or on their vestigial ways of being ‘human’. In our posthuman ethics of rights, all forms of matter (whether they are people, animals, plants, minerals, water) would have a right to actions that protect their survival and promote their flourishing. All those that have the capacity to take these actions would have a responsibility to do so. From this perspective, people with dementia have a right to lifelong learning and there is a social responsibility to facilitate this. Posthuman PossIbILItIEs and ProbLEms As discussed elsewhere (Quinn 2013), whilst posthumanism offers many possibilities, it also raises certain problems. Just as Braidotti’s optimistic vision of the ‘nomad’ seemed to leave out the forcibly displaced (see Colley 2010), so her joyful belief in ‘potentia’ needs to be tempered by recognition of all those forces that sap and distort ‘becoming’. Her targets of ‘the political economy of phallogocentrism and of anthropocentric humanism’ (Braidotti 2011, p. 99) are at once too vast and not forensic 38 J. QUINN AND C. BLANDON enough. Braidotti has spoken of inhabiting ‘my critical consciousness as a time machine which allows me to travel across different realities, or spatiotemporal coordinates’ (Braidotti 2011, p. 107). This is what makes her writing inspiring, but it can skate over the messy parts of the here and now which we must attend to in addressing dementia and other social problems. Deleuze and Guattari, guiding spirits of much posthuman thought, argue for the rhizome as the metaphor for the mode of connection across disparate elements of life and not ‘any structural or generative model’ (1984, p. 13). Explaining everything by underlying structure is seen to limit the complexity of the world and experience within it and to promote fixity rather than becoming. This is true, but nevertheless, it seems clear that the care of people with dementia in the UK is structured by class. Better care and a more stimulating environment with access to arts activities are all dependent on money. Basic dementia care is basic indeed if not supplemented by extra income and so, as in housing or education, a stratified system exists. The Alzheimer’s Society estimates that currently 25,000 black, Asian and ethnic minority people in the UK have dementia. Little is known about how black and minority ethnic people with dementia are treated or whether and how sexuality is considered, but there is no reason to assume dementia care is any more free of racism and homophobia than other parts of society. Addressing the inequalities of structure, however, would not free people with dementia from the narrative that positions them as formerly or less than human; only a challenge to humanist assumptions can do that. A sociocultural awareness and a posthuman perspective may sit uncomfortably together, but it seems both are necessary to understand how people with dementia are living. concLusIon In this chapter we have explored the posthumanist perspective we have used in our research with people with dementia. In the following two chapters we shall demonstrate in more detail the work we have done through this perspective in our two research studies. 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