A critical essay accompanying Alecia Neo’s video installation Between Earth and Sky, ‘Embodied Futurities: Caregiving in Movement, Movement as Care’ engages participatory ethnographic methods in service of embedded criticism (Costa 2016). Working with the movements and perspectives of a community of caregivers of persons with mental illness, artist and author both connect the physicality of care work and personally choreographed movement as forms of body practice. Furnishing everyday calibrations and strategies of living out the realities of long-term caregiving, movement and choreography are woven into the project design and analytic as tapping into that which lies in excess of expressivity, surfacing the repetition, frustration, tenderness, tedium, discovery, ambivalence, improvisation, intimacy, and commitment between those who care and those they care for.
What does the weight of caregiving look like? Whose weight do we bear? Can we share it?
An intimate portrait of a community of caregivers and a performance project, Between Earth and Sky seeks to make visible the contributions and needs of caregivers of persons with mental illness. Alecia Neo, along with movement coaches Sharda Harrison and Ajuntha Anwari, and members of the Caregivers Alliance (CAL) worked together to create a series of movement pieces, which expressed the embodied experiences of caregiving.
Due to continued stigmatisation and a lack of understanding of nuances and realities, the experiences of persons with mental illness are often opaque to society at large. Equally opaque, however, are the daily lives and inner worlds of the people who choose to care for them. Caregivers provide direct care to persons who are ill, disabled, or need help with daily activities and often do so as full-time livelihoods, making social and economic compromises to do so. They can often be alternately lionised unrealistically as selfless and endlessly forbearing or questioned for their refusal to delegate the role of caregiving to professionals. The CAL members involved in this project choose to provide support for their loved ones with mental illness. Drawing from their stories and reflecting the often routinised and physical nature of the act of caregiving, Between Earth and Sky seeks to eke out insights into the nature of caregiving through movement. In doing so, it also sheds light on many of the emotions and sensations generated in the course of the longue durée of caregiving, which lies in excess of expressivity.
The physicality of care work is seldom acknowledged or critically examined. Between Earth and Sky draws an explicit connection between care work and personally choreographed movement as forms of body practice. Emphasis is then drawn towards the potential of physical movements for expressivity beyond functionality. In using the body as a central axis for expression rather than as a tool, attention is momentarily (re)centred on the caregiver who has long learned to bear weight but may have forgotten how to give weight. The movement and voice workshops were therefore designed to aid the caregivers in processing and harnessing their lived experiences in unfamiliar but potentially helpful ways, culminating in self-choreographed performances with the guidance of Neo, who documented and wove the pieces together with photography and video for the installation. Rather than seeking to narrativise or dramatise trajectories that often do not follow a strict teleology, the works in this piece form a tapestry of the heterogeneous nature of caregiving, surfacing the repetition, frustration, tenderness, tedium, discovery, ambivalence, improvisation, intimacy, and commitment between those who care and those they care for.
Figure 1: Workshop practice at Pink Gajah with Ajuntha Anwari. Courtesy of Alecia Neo.
The Everyday Choreography of Survival
Cultural anthropologist and dancer Aimee Meredith Cox, whose research on the ways in which young people of colour in the U.S. manage their lives in under-resourced and overly policed environments, coined the term “everyday choreography of survival” which she uses as both an aesthetic practice for self-expression and as a theoretical framework that defines the subtle movements of negotiating a life fraught with structural and day-to-day challenges (Cox 2018). Cox bridges the quotidian practices that form the foundation of lives shaped by social and structural inequity, manoeuvres of nonconformity, and acts of dreaming as creative acts of navigation and choreography that are necessary for survival. While the subjective forces faced by CAL members and their loved ones are much different from those experienced by the communities with whom Cox works, the term carries powerful weight when considered in both the context of mental illness and long-term caregiving as everyday calibrations and strategies of living out their realities. In Between Earth and Sky, caregivers’ everyday choreography of survival is translated and enacted through their self-directed movement pieces.
Figure 2: Workshop practice at Pink Gajah with Sharda Harrison. Courtesy of Alecia Neo.
Caregiver and workshop participant Frank M. shared:
[The movement exercises] gave me a better understanding of what I’ve been going through, which I’ve been hiding all this while. So when I came out to do all these gestures and movements, I thought it was like a dance. But actually, it’s not just a dance. Initially I was thinking I must be able to dance to do this, but actually, no. It’s the movements we’re trying to capture. What your inner feelings are trying to tell you. Here I’m trying to tell you that I’m in deep waters… I’m walking on difficult terrain, on difficult ground, where I feel all the pins and needles. I’m showing that I’m trying to balance my family, my career, my family, my wife, everything. I should keep this balance and not tilt it [too much to one side] and cause a disaster.
And what keeps you going is always faith and trust. If you don’t have this supernatural [ability], you are just limit[ed] as human. This sort of situation is just impossible. Everybody has a belief, and whatever you believe in, just believe and trust. And because this supernatural force shall lift you up from this human situation. So that’s what keeps me going.
Breaking down the act of choreography into minute navigations rather than a sweeping dance, heroism and noble intentions are displaced by the truer reality of the acts of improvisation and getting by. Focusing on routines can show how caregiving lies in habituated activities and suggests that we can look to the patterning and embodiment of habituated actions in general to understand the values people enact and how they maintain social worlds through the physical practices of providing for others. Only with attention to the mundane, the banal, the everyday can we begin to piece together a semblance of the lived experiences of caregiving, reflected through the subtlest of gestures (Aulino 2016: 93).
In all but two of the performances in Between Earth and Sky, the caregivers are captured moving by themselves, although their choreography arguably telegraphs other presences.
Figure 3: Workshop practice at Pink Gajah with Sharda Harrison. Courtesy of Alecia Neo.
Figure 4: Workshop practice at Pink Gajah with Sharda Harrison. Courtesy of Alecia Neo.
Complexities of Care
The contemporary usage of the English word “care” may contribute to the tendency to assume a correspondence between particular internal states, such as feeling affection or being concerned (“care about”), and the act of best providing for another (“to care for”). Yet presumptively emphasizing the “right” emotional or attentive orientation can lead to ignoring the possibility that caregivers experience ambivalence or struggles at points, even though they undeniably love the ones they care for (Aulino 2016: 99). Exertions, gestures, and voice work within a piece of movement can thereby allow caregivers to express emotions that they would normally not be comfortable articulating or even admitting consciously.
Movement practice can also provide a reprieve in temporarily creating an alternate, even a normalising, sense of space and time for caregivers. In everyday existence, temporal experiencing mutates when sheer physical and metaphysical demands ground mentally ill persons and their caretakers in the present moment, requiring a disproportionate attention to the here and now. Through creative expression and manipulation of the body, caregivers experience an alternative modality that brings about new perspectives to what they are often too pressed up against to see outside of.
As caregiver and creator Carol Ee put it:
[These performances] also send light to our frustration, when we are dealing with a difficult situation. We have our blind spots when dealing with our loved one. We can’t see or think logically at times and most of the time our reactions involve our own emotions. When I am telling a story, I’m able to see myself, from a third person point of view, rather than just me and my loved one.
The Body, Autopoiesis, and Balance
Creation and self-positing mutually imply each other because what is truly created, from the living being to the work of art, thereby enjoys a self-positing of itself, or an autopoietic characteristic by which it is recognised (Guattari et al. 1994: 11).
Autopoiesis is a key modality of movement as a creative practice, but in discussing the roping in of the body into the forces of the work, this might just as easily be applied to the act of caregiving. The physical routine of the caregiver, rendered as ritual, provides insight into a phenomenological reality that escapes forms of referential meaning and instead brings to light an important way of being in and understanding the world (Aulino 2016: 93). The self-constitutive nature of an autopoietic movement practice has further resonance in the at-times weighty necessity of generating and maintaining a fragile wholeness and constancy as a caregiver for mentally ill persons. Moving through the performance and lived space alike, the body is the constant that interpolates, that moves and is moved, is halted, is unsettled, is vulnerable, is subject/ed to. Through the workshops and subsequent performances of Between Earth and Sky, the movement is explored as a way of ownership and self-authorship that instantiates and creates yet cedes to flow and force.
Figure 5: Tea session during workshop at Pink Gajah with Ajuntha Anwari. Courtesy of Alecia Neo.
Figure 7: List of exercises from one of the workshop practices at Pink Gajah. Courtesy of Alecia Neo.
At the same time, the recuperative gesture of remapping personhood through expression, pleasure, calibration, and catharsis through a movement practice cannot stop short at the individuated process in this project. While undeniably worthwhile as a pursuit and an exercise in its own right for fostering the wellbeing of caregivers, the caregivers’ reality is inextricably tied to that of the loved one they care for. Within the paradigm of the project too, therefore, the movement of the caregiver always circulates the awareness of the relational practice at the heart of their role. What is called for, then, is not a freewheeling solipsistic self-discovery or self-expression, but the drawing out of pockets of freedom, given the limitations of their reality, into fully-realised moments of humanity and truth. In fact, in the everyday choreography of survival, awareness and navigation of the limitations of the spaces that the body moves in produces meaning, highlighting the expertise and mastery in the care of both themselves and their loved ones.
Crucially, it is just as important to affirm the personhood of the caregiver as it is to uphold that of the ones they care for, particularly because of the dehumanization faced by mentally ill persons in both social and discursive contexts. In the case of the caregiver moving in the world, to posit and to generate is thus more like the grafting of two intimately entwined fully-fledged life forces, rather than the strict autopoiesis of one.
Caregiver Janet Koh Hui Kheng sums it up:
Caring is to focus on what a person with dementia can still do or feel, not just on what they might have lost. This will help support my mother to live well with the condition. It’s to see that there is a person behind dementia. Caring is to know and understand my mother better than dementia. It’s seeing my loved one as separate from her condition and to value her more than the disease. Caring is to see that her behaviour, no matter, how unreasonable it may seem, is due to the underlying disease and the changes it effects on the brain. It’s to support her feelings, which is most important. I’m getting to know my mother all over again – building a new relationship.
Figure 8: Janet Koh Hui Kheng, caregiver to her mother living with dementia, photographed together post-workshop. Courtesy of Alecia Neo.
Weighted and Imagined Futurities
Caregiver LM shared:
Caregiving for me, as a caregiver, has two meanings. One, people will look at it in a negative way, “Why are you so stupid, to take care of a son that never improves, never cured or recovered? Just put them somewhere, let them die.” That’s what all the comments are about. You can just move on with your life, your career, leave the sickness to be taken care by doctors. If the child dies or cannot be cured, it’s the doctor responsibility, just leave them there. But as a caregiver, I see it from a different perspective. I see it positively; I see that every child born has the opportunity to live.
Between Earth and Sky poses an invitation for caregivers to perform self-possession in ways that rescript the gestures of coping, being, and giving as meaningful life trajectories, flowing against the stream of neoliberal notions of success and citizenry. In the face of long-term emotional and mental stresses of caregiving and economic realities, the work nonetheless prompts both caregivers and audiences to imagine alternate futurities for caregivers. Imbricating heightened intimacy and labour flows, the rescripting of the non-teleological nature of long-term caregiving and the life course of caregivers as spotlights their complication but affords worthwhile envisionings of a future. This is even more so the case for their loved ones with mental illness, for whom social death encroaches before the biological, but whose lives caregivers defiantly insist upon supporting, maintaining, and cherishing.
Supplementing documentation of the body in motion, Between Earth and Sky also comprises an on-site display of kites, which are positioned within the piece as symbolic of both vulnerability and freedom. Created by Neo as a response to caregiver accounts gathered over the course of working with CAL members, a total of 14 kites shaped like shields were crafted to feature close-ups of clothing belonging to each caregiver and their loved one. The materiality of the kites, and the everyday interconnection forged through the association of clothing, bring another layer into the performance that is nonetheless connected to the body. As the kites are flown during the exhibition, they may be viewed as representative of alternative futurities of caregivers and the realities of persons with mental illness, surrogates taking flight where their bodies cannot yet go.
Socially Engaged Art and Reciprocity as Praxis
Socially engaged or socially oriented art practices often problematise traditional models of authorship or creatorship through dialogical or collaborative processes, as intimated by arts practitioner Chu Chu Yuan:
Beginning from the past three to four decades, art discourses have become more diversified and wider in scope as artists, practitioners and critics become interdisciplinary and increasingly socially-oriented. Art practices have become engaged with society and life in more directly collaborative and/or interventionist.[…] the arts continue to be imbued with ‘transformative’ and catalytic value and artists are entrusted with the position and responsibility to use the vision and power of art to effect positive changes (Chu 2013: 20).
In the advent of socially engaged collaborative art practices, Chu notes that a dislocation of traditional notions of authorship has arisen. She highlights in particular the issues of autonomous and/or shared authorship, and problematizes the ethical positionality of artists’ interventions into the lives of collaborators. In reflecting upon her past projects with frequent collaborator Jay Koh, Chu points out how, in her PhD research, she aims to address and move her previous conceptions of the artist-collaborator relationship beyond one where the artist is the facilitator, to one in which the artist is equally invested, entangled and exposed in the process:
My earlier contributions towards the discourse of autonomy and shared authorship veered on the side of facilitation….[in which] although…relationships and outcome need to be negotiated between the self and solidarity with others so that ‘self+other+context’ emerges as creative entity, the presiding drivers of the work were the participants’ specific expressed needs and interests. The process that is based on ethical dialogical processes and durational sustained engagement was aimed at producing the right forms of organisation and outcome for the participants and community. The artist is there to lend her/his skills and expertise. From 2003 onwards, my experiences as an artist/collaborator/facilitator in Myanmar demonstrated to me how as artists we are not neutral facilitators … [and] I realised that the articulation of our methodology of engagement was insufficient… (Chu 2013: 23)
Between Earth and Sky as a co-created work between Neo, the CAL caregivers, and the movement artists are guided by Neo’s commitment to socially engaged art as praxis. Each work requires a bespoke negotiation of means and levels of engagement calibrated to the specific needs and interests of the community and participants involved. As noted by Chu, negotiation takes place not just between parties involved in the co-creation of a work, but is “also internal to art’s own negotiation of its existence and its reality in the world, manifest through the artist’s negotiation with notions and processes of autonomy and shared authorship.” (Chu 2013: 23)
Neo’s stakes in socially engaged art and praxis are firmly based in a belief in reciprocity and co-production. Disentangling altruism from advocacy, Neo holds that all parties involved stand to learn and benefit from working together, and highlights transparency about her own artistic investments in the project and personal takeaways of working with CAL. She stresses reciprocity as the key process the project was designed with, as well as the genuine form of interaction and relationality produced by it (A. Neo 2018, personal communication, 1 September). Attention was therefore given to creating environs and conditions, which fostered reciprocal behaviours, such as empathy, mutual reflection and reflexivity, raised awareness, deep listening, and attentive observation.
Figure 9: Kites featuring close-up photographs of personal clothing from each caregiver and their loved ones being flown at Punggol. Courtesy of Alecia Neo.
Figure 10: Kites featuring close-up photographs of personal clothing from each caregiver and their loved ones being exhibited at Jurong National Library, Singapore. Courtesy of Alecia Neo.
As gestured to by Grant Kester:
Within a given dialogical situation it’s not uncommon for insight to be generated that challenges normative values and beliefs (in fact, that transformative process is really at the basis of a dialogical aesthetic). This is a byproduct of a reciprocal context, but there’s nothing about reciprocity per se (as a formal transformation in the way in which art is produced) that guarantees this outcome. Rather, the outcome is dependent on the fluency with which the artist and their collaborators respond to a reciprocal dynamic.
Kester posits the centrality of reciprocity in the art practice of Jay Koh, a practitioner of dialogical art in Southeast Asia. Grant Kester, “Art and Answerability in Jay Koh’s Work”, in Jay Koh, Art-Led Participatory Processes (Malaysia: Strategic Information and Research Development Centre, 2016), 3.
Per Kester, a reciprocal dynamic serves as a foundation but not a guarantor of intimacy and collaboration. Prior to the workshop with Harrison and Anwari, many of the caregivers had expressed apprehension and scepticism about their own ability to immerse themselves in a movement practice or make art. They subsequently expressed surprise at the degree to which they found themselves committing to the process, first finding empathy and understanding in their fellow CAL members’ reflections. This empathy allowed them to embark on a dual process of seeing outside of their own journeys within the context of more deeply into themselves through collective and individual reflection. They credited Neo’s guidance with easing the way towards translating their experiences, motions, and emotions of and from daily caregiving into movement, and then eventually into cohesive, choreographed pieces over which they could take ownership.
Throughout this arc of discovery, Neo highlights deep listening as a technique that was integral to each stage of the project, referring not only to attentive engagement with their collaborators but to their own bodies. In Harrison and Anwari’s workshop, constant awareness to states of being was a key focus, with participants observing each other’s breath, pace, stories, and gestures. On an individual level, Neo also notes that deep listening crucially entails “being able to listen to ourselves and carve out space for personal well-being (A. Neo 2018, personal communication, 24 September).” For caregivers who are sometimes accustomed to deferring or deprioritising their own needs and inner voices, creating this space for listening to themselves, and other corroborative or even contrasting voices of other caregivers, is not only beneficial, but necessary.
“I observed a genuine sense of trust and exchange amongst the participants with us artists, especially those who attended the workshop, which offered a safe space for sharing, experimenting, letting go and just being. The caregivers have also become my pillars of support in the process of this work, and learning to care for others,” Neo reflects (A. Neo 2018, personal communication, 24 September). This work of socially engaged art, therefore, creates the opportunity for carving out new configurations of collectivity, bringing together an enunciatory community to give voice to the complex realities of living with mental illness.
Between Earth and Sky being a multi-sited and multi-modal project also productively challenges “art’s own negotiation of its existence and its reality in the world,” including the durative component of the creation process (Chu 2013, 23). The choreography process, for starters, took place in both the movement workshops and the caregivers’ subsequent personal choreographies that were documented by Neo. While the edited movement pieces were shown on the video and Neo’s handcrafted kites displayed as part of the piece, these two elements did not remain static in their relation to each other or become finalised as “products” of the project to be exhibited. As part of the roving art show Personally Speaking: The Art of Caregiving, the project was first exhibited at Oasis Terraces in Punggol and Jurong Regional Library before landing at Objectifs. During a celebratory tea session at Oasis Terraces, Neo and the caregivers who created the work took the kites down from the exhibition space and flew them at the open space next to it. As the writer on the project who had come aboard during its late stages, I was able to participate in the kite-flying as well as meet the caregivers for the first time. Till this point, I had thought of the filmed choreography and the kites as separate elements, but as I joined in with the caregivers and Neo, as we cheered each other on and helped each other’s kites catch wind by throwing them into the air, I began to revise my conception of the kites as a solely material component. Enacted as such, the kites afforded another act of shared movement and demonstrated the consistent relational and emotional components of solidarity and possibility that flowed through the other stages of this project. As the kite-flying was also photographed by Neo and Objectifs staff members for the exhibition, the act of creating came around once again even after the project’s presumptive completion. Socially engaged art a multi-modal process results in hybrid practices drawn from various disciplines, thereby requiring different ways of viewing, evaluation and positioning from both its co-creators and audience.
The above process is influenced by a framing introduced by the anthropologist Kim Fortun writing on enunciatory communities:
Recursion produces meaning through iteration, running back over preceding operations again and again to better understand how they’ve already determined what the next operation can be….Reflexivity calls for the [artist] to position herself. Recursivity positions her within processes she affects without controlling, within competing calls for response. Reflexivity asks what constitutes the [artist] as a speaking subject. Recursivity asks what interrupts her and demands a reply. Thinking in terms of recursivity is a way to hold [art] responsible for advocacy (Fortun 2009: 23).
I have replaced the word “ethnographer” with “artist” in the above passage that I come back to again and again in my own work as an anthropologist, and which I returned to once again as I reflected on Between Earth and Sky. By building upon itself during each encounter between its co-creators, the project sees Neo, as the artist, calibrating and placed in various creative and relational capacities in order to be an artist who instantiates yet cedes to flow, who exerts creative force but shapes it around accountability and collaboration.
Beyond the work’s exhibition as an art piece, through the workshop and creation of individual movement pieces, Neo and collaborators present the possibility of integrating a movement practice into the caregivers’ future techniques of caring for the self and for their loved ones, both palliatively and creatively. In addressing art-making, movement as autopoiesis, living with mental illness, and the act and arc of caregiving, Between Earth and Sky as a project is not only multi-sited but what one of my teachers would term “multi-sighted.”
Figure 11: Film still of participating caregiver, Nur Hidayah’s performance in her home Courtesy of Alecia Neo.
Figure 12: Film still of participating caregiver, Alyvna Han’s performance at a temple she frequents. Courtesy of Alecia Neo.
Figure 13: Film still of participating caregiver, Frank M’s performance. Courtesy of Alecia Neo.
Figure 15: Film still of participating caregiver, Janet Koh Hui Kheng’s performance in her home. Courtesy of Alecia Neo.
Living with Mental Illness in Singapore
While it is difficult to represent, much less quantitatively sum up, the experience of living with mental illness in Singapore and its accordant social stigmatisation, a brief glance at a survey released in September 2018, the first of its kind commissioned, by the National Council of Social Service (NCSS), provides some context for what is faced by the members of CAL and their loved ones featured in this work. The results of the survey reflected that while most Singaporeans agree that more needs to be done to reduce societal stigma, they are also reluctant to proffer acceptance on an individual basis.
Even as more people are seeking outpatient treatment at the Institute of Mental Health (IMH), more than five in 10 respondents in a recent survey indicated they are unwilling to live with, live nearby or work with a person with a mental health condition.
In the survey of 1,796 people conducted in 2017, six in 10 people said they believe that mental health conditions are caused by a lack of self-discipline and willpower, while half believe that persons with mental health conditions should not be given any responsibility.
Yet seven in 10 respondents acknowledged that persons with mental health conditions experience stigma and discrimination in their daily lives, and eight in 10 said they believe the best therapy is for them to be included in society (Ng 2018).
According to Sharon Gan, a cluster head at CAL who serves as a psychiatric rehabilitation practitioner and senior counsellor, service gaps in the mental health and caregiving sector include lack of respite and residential mental health services to help stressed-out caregivers when they need to take a break from caregiving. Gan notes that most caregivers are not forthcoming about sharing their journeys and challenges as they bear shame from the stigma of mental illness, and therefore believes that the arts can be a very powerful advocacy and recovery tool if used appropriately as spokes-medium against barriers to dialogue and visibility (S. Gan 2018, personal communication, 4 September). Between Earth and Sky is, therefore, an interjection into this conversation that seeks to transcend the challenges of conventional articulation, facilitating expression and fostering support through bringing together a community of caregivers and artist advocates.
Aulino, F. (2016). ‘Rituals of Care for the Elderly in Northern Thailand: Merit, Morality, and the Everyday of Long-term Care’. American Ethnologist. 43:1, pp. 91-102.
Chu, CY. (2013). ‘Negotiation-as-active-knowing: An Approach Evolved from Relational Practice’, Ph.D. thesis, Robert Gordon University.
Costa, M. (2016). ‘The Critic as Insider: Shifting UK Critical Practice Towards ‘Embedded’ Relationships and the Route this Opens up Towards Dialogue and Dramaturgy’, in D. Radosavljević (ed. by), Theatre Criticism: Changing Landscapes. London: Bloomsbury.
Cox, A. (2015). ‘The Choreography of Survival’. Society for Cultural Anthropology. 29 June. https://culanth.org/fieldsights/the-choreography-of-survival. Accessed 4 November 2018.
Deleuze, G. and Guattari, F. (1994). Qu’est-ce que la philosophie? (trans. Tomlinson, H. and Burchell, G.). New York: Columbia University Press, pp. 11.
Fortun, K. (2001). Advocacy After Bhopal: Environmentalism, Disaster, New Global Orders. Chicago: University of Chicago Press.
Ng, Charmaine, ‘Many Still Steer Clear of People with Mental Illness Poll’, The Straits Times, 9 September 2018, unpaginated, https://www.straitstimes.com/singapore/many-still-steer-clear-of-people-with-mental-illness-poll. Accessed 9 September 2018.
Tan, J and Neo, A. (2018). Personal correspondence. Singapore. 1 September.
Tan, J and Neo, A. (2018). Personal correspondence. Singapore. 24 September.
Tan, J and Gan, S. (2018). Personal correspondence. 4 September.