Film still, Where We Will Go (2023) by Kate Sweeney
I am delighted that a special issue of the journal Literature and Medicine on the representation of pain has just been published. Edited by Sara Wasson, the focus of the volume lies not in the claim that pain is unspeakable, but rather in its varied cultural legibility – the ways in which existing cultural contexts and expectations influence what can be heard of pain’s particular stories.
My own essay in the volume looks at two poetry collections by mothers who have lost their babies – Rebecca Goss’s Her Birth (2013) and Karen McCarthy Woolf’s An Aviary of Small Birds(2014). Their experiences of loss are different: Goss lost her daughter, Ella, from an incurable heart condition at sixteen months, while McCarthy Woolf lost her son Otto at birth. In their haunting collections, both poets nevertheless adapt the form of the lyric elegy to express the pain of maternal grief. This form invites its readers to inhabit and linger in the singular moments that the poems commemorate, rather than reading towards a recovery. Both poets also address the ways in which cultural expectations of pregnancy and motherhood exacerbate the pain of grieving for a baby, because they make it difficult for the experience to be heard.
I wrote this essay as I was preparing to work with the parents who had experienced baby loss from a multiple pregnancy. As we talked with the parents in the workshop sessions, I could glimpse threads of connection between the work Kate was developing with them in the film and the poems I had been reading. The poets attend carefully to the shaping of the words on the page, and this found its echo in the parents’ drawings, using the inks that Kate had made. Their careful tracing out on paper of the names of their lost babies gave weight and form to their loss, making it tangible and constituting its own kind of poetry. The question of how to move forward from the loss also resonated across the poems and the film. The parents’ articulation of what it means to live as a family beside the lost twin echoed the closing poems of Goss’s collection, which explore how she shares with her second daughter the ongoing presence of her older sister, who died before she was born. The poets emphasise that the pain of losing a baby is heightened by the cultural illegibility of baby loss; for the parents, the complex grief of losing one twin while another survived rendered their experience particularly challenging to tell and to be heard.
Thanks to Sara for her commitment to the special issue on pain, and for her meticulous care in bringing the essays to publication. It’s been wonderful to be a part of this project.
Sara Wasson, ‘Pain’s Plurals and Narrative Disruption: Communicating Pain and Honouring its Telling’, Literature and Medicine 41.2 (2023). The article can be accessed here.
Anne Whitehead, ‘”Your Tiny White Vests, Unworn”: Contemporary Elegies of Maternal Loss’, Literature and Medicine 41.2 (2023), pp. 372-90.
Film still, ‘Where We Will Go’ (2023) by Kate Sweeney
Last week, Judith and I travelled through to Sunderland University at the invitation of Tom Fairfax to speak about the twin loss project to second-year medical students, as part of the fourth Humanities in Medicine Symposium. It was wonderful to see so many medical students there, and to participate in such a thoughtful exploration of the intersections between medicine and the humanities.
As I listened to the other speakers at the event, I found myself reflecting on hands. The first speaker, Jonathan Coates, is a general practitioner in the east end of Newcastle and a research fellow at the Durham Institute for Medical Humanities. Outlining how his medical practice had come to embrace the humanities, Jonathan explained to the students that he had taken an optional module in Medical Photography during his undergraduate degree in Medicine, which had given him a starting point to which he had later returned. Jonathan’s chosen topic for his photography project was bereavement, and on his powerpoint slide he showed a photograph he had taken of a woman’s hands for his portfolio, which comprised a quiet yet eloquent portrait of grief.
Emmanuel Oladipo, Lecturer in Clinical Communication at Manchester University, talked to the students about his own spoken-word poetry in the context of medical training. As I watched him speak and perform his poetry, I reflected on the power of gesture to convey meaning. Performance poetry can amplify and elaborate on the interaction between word and gesture in everyday communication, emphasising that gesture sometimes reinforces what is spoken, and at other times contradicts it.
Artist Kate Stobbart has long had an interest in hand movement and gesture. Her work included video pieces in which only her hands were visible, performing gestures that have accompanied the words of others – televised speeches, for example. With the words taken away, these works ask us to think about the eloquence, if not the poetry, of hand gesture. As a practicing doctor, Kate engaged the students in conversation about how her artistic attention to non-verbal communication might also feed into the consulting room.
Watching our own film with the students, I found myself attending to the different hands that appear in the work. Hands are important to Kate Sweeney, the commissioned artist on the project, and part of the ritual that accompanied parents bringing materials into the workshops involved her photographing their hands holding what they had gathered. One of these photographs was integrated into the film, and depicts a parent holding rose petals. The photograph reminded me of Jonathan’s study of hands, in that both comprised intimate portrayals of grief. In Kate’s photograph, the tenderness and protective care with which the parent’s hands hold the fragile petals is evident. The petals had been gathered by the baby’s grandparents and when I look at this image, I also see their hands, carefully picking and sorting the petals so that they can be included in the project.
Film still, ‘Where We Will Go’ (2023) by Kate Sweeney
A child’s hands appear in the video sections of the film where the walks are depicted. These hands represent the involvement of the siblings in choosing and gathering the materials. The hands are exploratory – playful, even – as they test out the qualities of what they have found, and they give us a different orientation to loss. They remind us that the parental perspective sits alongside other frameworks of understanding and modes of communication.
Film still, ‘Where We Will Go’ (2023) by Kate Sweeney
The artist’s hands appear in those video sections of the film which document Kate’s making of the inks. These hands are active and doing – washing and sorting materials, grinding crab shell into powder, or pouring distilled liquid through paper filters. Juxtaposed with the hands of the parents and children collecting materials, we can see the co-creative process that is embedded at the heart of our project, as different hands perform the varied tasks and processes that are needed for the inks to be made.
Film still, ‘Where We Will Go’ (2023) by Kate Sweeney
This principle of co-creation is also evident in the various drawings that we see in the film, which were made either on the walks or in the workshops. In the image that closes the film, Kate overlaid the parents’ experiments with their inks in the workshops; each of them have inscribed the name of their lost baby. The ink drawings in the film gesture towards the hands that have made them, and they mark the trace of where these hands have been.
I extend my thanks to Tom, and to the other speakers, for such a rich and cohesive symposium, inviting us to think with the students about what the arts, humanities and social sciences might bring to medical training and practice. Watching the film in this context gave me a fresh perspective on the rich and varied vocabulary of hands that threads through and across the work.
Making inks was at the core of the film that we co-created with parents who had experienced the loss of one twin from a multiple pregnancy. Workshop sessions were structured around the three stages of the ink-making process, as outlined by Jason Logan in Make Ink: (1) find ink (gathering the materials); (2) make ink (creating and bottling the inks); and (3) test ink (drawing and writing with the inks). The natural materials collected either on the walks or in other meaningful places – bilberries, buttercups, rose petals, an empty crab shell – were distilled into inks, which were in turn transformed into drawings and film animations. The memories of the lost babies permeated these activities, and ink making became its own ritual of commemoration.
The parents spoke often during the making of the film about the bottling up or repression of a grief that could not easily be articulated, because it is not well understood. Outside the family, the loss often went unspoken and even within the family it was hard to share, particularly across the generations. The inks gave a new and different resonance to what it meant to bottle up feelings associated with the loss. One parent observed: ‘having those gorgeous little bottles – bottled up feelings and emotions and places – it’s a really nice thing to have at the end of the project. The bottles are sitting on the shelf so we know that any time we want to we can go back and use those again and we know that if we see other things that we like we can make more inks. Even for anniversaries or things like that we know we can do that.’ The ‘bottling up’ of the feelings and places associated with the walks as inks created new memories, and grief was experienced not as internal, but as an object on the shelf that could be picked up and put down, used and remade.
The parents talked about the beneficial process of gathering materials on the walks, which gave dedicated time as a family to remember, and provided them with an activity on which to focus: ‘I think as an actual process, it’s a wonderful therapy tool – I’m not sure if that’s the right phrase – just to be able to spend some time somewhere that you like thinking about the loss and then having something practical to do. We are going somewhere that we enjoy being and we want to collect these materials and we are going to turn them into something completely different. It might have started out as buttercups or crab shells, but it ends up being this beautiful film.’ The transformation of the materials into something different – and something beautiful – is key to the project’s meaning for the parents.
Kate made inks in her studio from the materials gathered on the walks, and she also gave kits and instructions to the parents so that they could make their own inks, either between sessions or once the sessions had ended. One parent commented of this aspect of the project: ‘It was easy to make the inks and we did our own from the instructions and equipment that Kate gave us. I think this was something that could be given to all sorts of families and not just families that have lost a child but anybody who has lost anyone.’ While the families appreciated the creativity of what could be done with the inks – the drawing and writing that they enabled – the ink making itself seemed to be particularly helpful for navigating grief as a family, and the bottled ink was treasured in and of itself.
Babs Behan, founder of Botanical Inks, has written of ink making from natural materials:
There is something simple and beautiful about walking out onto the land and picking up fallen leaves, harvesting flowers and berries, and digging up muddy roots and then soaking them in water to extract their colour. I have seen people falling in love over and over again with these old-new ways of creating something – they love the fact that bringing more beauty into the world needn’t be harmful to the environment or to their own personal health. (p. 10)
In the context of our project, making inks transformed the bottling up of feelings about a difficult form of grief into a positive meaning and activity, and provided beautiful objects that the parents could keep once the project had finished. Like Behan, we also watched the parents fall in love with the techniques and processes of ink making that Kate introduced to them in the workshop sessions.
Film still, Where We Will Go (2023) by Kate Sweeney
To mark Baby Loss Awareness Week (9-15 October), I am posting the text of a talk I recently gave at a half-day event focusing on sensitive subjects. Organized by Olivia Turner at Newcastle University, the workshop explored ethics and sensitive subject matters in creative practice.
Working with Lived Experience of Losing a Baby from a Multiple Pregnancy
The film Where We Will Go emerged out of a year-long practice of engagement with two families who had lost one twin from a multiple pregnancy at or before birth. The project team was me, Judith Rankin from the Faculty of Medicine, Nicholas Embleton from the Neonatal intensive Care Unit at the Royal Victoria Infirmary, and the charity Tiny Lives. We commissioned artist-researcher Kate Sweeney as the creative practitioner on the project.
The first phase of the project worked individually with parents, and Kate invited them to go on a ‘memory walk’ in a place that was meaningful for them and gather materials from which inks would be made. These inks were then given back to the parents, and the families drew and wrote with them – Kate has animated these images in the film, alongside footage of the places the parents went. In the project’s second phase the parents were brought together for the making of the film. Attention turned to the text of the film, which Kate compiled from conversations with the parents, as well as to the sound recording of the voices, and reviewing edits of the film together.
In this presentation, I focus on two aspects of the project that resonate with the theme of sensitive subjects. First, I think about the practice of working with a lived experience that the parents still sometimes struggled to think about. Secondly, I reflect on the importance to the film not of twinning but of triangulation.
First, then, the practice of representing a subject that was profoundly sensitive to the parents who participated in the project. They wanted the film to represent their experience, both as a resource for other parents and as a vehicle for talking to their children about their missing twin, or sibling, either now or in the future. But they also did not want to make a film that they would find difficult to watch – they wanted parents experiencing this form of loss to watch the film and be comforted by how other parents had navigated it, so that they would have hope. One mother observed: ‘I’d like the film to be able to help others in those initial days, so that they know it does improve. That you can live beside it. We all move together alongside her.’ The process of making the inks sought to base the project in an activity: the parents were doing and could say as little or as much around that as they wished. The activity was slow and structured, and the parents chose to involve their children and their own parents in the gathering of the materials.
What was striking was the extent to which, in talking about the inks and their making, the parents were able to speak of their loss, and perhaps more powerfully so than in addressing the death head on. Kate spoke of the process of making inks as one that held its own poetic vocabulary of grief. For example, the darkening of the ink as the materials react to the mordant is called a saddening. We thought about the inks as infused with the materials and with their associations. The rose inks were made from petals gathered from the rosebush planted in remembrance of the lost twin in her grandparent’s garden and the fragrance of the ink prompted a wish for the baby’s memory to infuse the heart of the person who opened the bottle, the scent meaning that they too could learn her ‘by heart’. Gathered by the twin’s grandparents, the petals were sorted and sent to her parents in the post, the activity a means of familial connection and itself communicative of hopes that they (she) would survive the journey. Describing the act of making a painted butterfly with her eldest daughter, another mother observed: ‘You put it together and see how it’s separated out, with the inks pulling through’. She then described the responses of her two children to the loss of their sister: ‘Her twin brother doesn’t even know what he’s lost. Her sister feels the loss more because she wanted a little sister. But she would have been more left out if she was here.’ The act of separating out and the inks pulling through bleeds into an articulation of how the baby’s memory diffuses differentially through her sibling and co-twin.
The memorialisation of babies lost at or around birth tends toward the metonymic register. The cast of a footprint is powerful because it is a part of the whole, it stands for what is missing. The inks tend more toward the metaphoric register – they enable creativity because they can be infused with any material that holds an association with the loss. The water is a carrier – of the material but also of the associations with which it is invested. In the Buddhist tradition, children who die are ‘mizuko’, which translates as children of the water. The making of the inks resonated with and formalised the mourning rituals in memory of the parents’ own unborn, or born too soon, children.
In making the film, we were aware that at its heart were two twins who had not survived birth. We were working with two families, first one to one and then together. There were two memory walks – one to a beach and one in the hills. The film was structured around twinning of different kinds, and Kate used the split screen of the film to amplify this motif of the double or twin.
Reflecting on the film, I am struck though by the importance of the structure of triangulation. Every session that we held with the parents involved both me and Kate Sweeney as facilitators. For the most part, Kate led the session, and I was in the role of witness, noting down key words and phrases that then formed the basis of the film text. Sometimes I asked for elaboration of a point, or asked questions and gave prompts. I kept my own sketchbook-journal that recorded and reflected on each session in the following days. After each session, Kate and I scheduled half an hour to talk about what had been shared with us and to record some preliminary thoughts.
In terms of process, it seems to me that the triangulation was vital in terms of the sensitivity of the subject matter. It meant that the therapeutic connotations of the one-to-one relation were disrupted. For a form of grief that has not been recognised and that has felt unheard outside of the family group, the witness-function of the third person in the room seemed important to the parents. The sessions offered them a space away from work and family where they could take time to reflect and to create positive new memories in relation to the loss. One parent noted: ‘With a baby to look after, there wasn’t time then to process the loss properly. The sessions provide a mental space and you and Kate are open and listening. There are no interruptions. The memories are so few and the focus is around the funeral. The project is giving us prompts to create new memories and associations.’ The triangulation enabled the project team to hold the difficult memories between and across the sessions and to shape the film in response to them.
What then is to be summed up from these reflections? The main point I want to pull out of these threads is the value of indirection in relation to sensitive subjects, of coming at things at a slant. One the one hand, the process of making and talking about the inks embedded indirection into the project’s process, making them a carrier of meaning, loss and hope. On the other hand, indirection was achieved through embedding into the conversations a witness, who is an explicitly reflective and recording presence. The ethics of the project then lie not only in enabling the parents to speak of this underacknowledged form of grief, but also in enacting and reinforcing the act of listening, so the parents also knew that they had been heard.
Film still, Where We Will Go (2023) by Kate Sweeney
The Losing a Twin at Birth project film was recently exhibited at the Newcastle Contemporary Art Gallery.
Kate’s film, Where We Will Go, was included in the exhibition Communities and Change, which ran from 3-7 July 2023. Curated by the organising committee of the Memory Studies Association seventh international conference, the exhibition brought together installations by local and international artists exploring the role of memory in communities navigating change.
Other participating artists included the Amber Collective, Henna Askainen, I-Wei Wu, Pablo Martinez Capdevila and Tara Hipwood.
Thanks are extended to Catherine Gilbert and Alison Atkinson-Phillips for their kind invitation to participate.
The awards were established to recognise and celebrate great examples of collaboration beyond the university. They showcase teaching and research that brings value to the social, cultural, or economic wellbeing of a place, whether that is the city of Newcastle, the broader region, or across the globe.
Our project was the winner under the category of ‘Engaging for Health, Wellbeing and Societal Benefit.’
We received the award at a ceremony hosted in the Common Room at the Mining Institute in Newcastle. Newcastle University head glassblower Robyn Hare created a beautiful artwork that was presented to us at the ceremony.
We felt honoured to be in the company of such inspiring colleagues, and we are grateful to the parents who participated in the project for their commitment and generosity.
Film still, Where We Will Go (2023) by Kate Sweeney
We conceived of Losing a Twin at Birth as a project that worked with parents to capture their experience of this complex form of grief. Yet the activity of gathering the materials for the inks enabled other family members to be involved.
In my last blog post, I described how the grandparents of one family participated in the project by gathering rose petals from their garden and sending them through the post, so that they could be used to make the inks. In another family, the grandparents took part in the memory walk, which became an occasion to remember and talk about the lost twin. Both families included their children in the memory walks, and they helped to choose which materials were collected.
The sketchbooks Kate provided were used by the parents to record images and thoughts relating to the project. Each of the parents also gave a sketchbook to their children. As the project progressed, we received drawings from them, giving us a glimpse into the sibling perspective on this form of grief. On the memory walk, one co-twin sketched the surrounding hills using ‘ink’ from bilberries collected on the way, and Kate used this drawing for the title image of the film. Another co-twin declared at the end of the memory walk that she had seen a dolphin in the sea, and she drew this in her sketchbook. Kate animated the drawing to end the film.
For the parents, it was important to talk to their children about their lost siblings so that they remained a constant presence in the family. The memory walks extended the ways in which they were already creating memories with their children. One of the parents observed, ‘The memories are so few, and the focus is around the funeral. The project is giving us the prompts to create new memories.’
At the beginning of the project, the parents expressed a wish to help other parents by making the film. During the course of the project, they came to see the film as a document that they could also share with their children, either now or when they are older and want to know more about their siblings who have died. One parent described the film as a way of ‘safeguarding for the future’.
While the parents remained the central focus of the project, it became clear that their grief could not be separated from the effects of the loss on other family members. The parents chose to involve their children and their own parents in the project activities, and the film likewise sought to capture the contribution of different generations to its making.
Film still, Where We Will Go (2023) by Kate Sweeney
For one family who participated in the Losing a Twin at Birth project, roses had taken on a particular significance. They explained, ‘When a new baby is born in our family, we find a rose with a similar name and plant it for them. We give a lot of roses, to everyone.’
These parents wanted to collect rose petals for their inks. Our conversations often returned to the progress of the roses in their garden: ‘Our roses are slow this year, but the garden is full of buttercups.’
In the second session, Kate gathered the materials from the memory walks. The parents brought a sealed zip lock envelope filled with rose petals. These had been collected by the twins’ grandparents, from the rose bushes in their garden. They had carefully rinsed and sorted the petals before posting them to the parents. The parents noted how hard it can be for an older generation to talk about the loss of a baby, observing, ‘My parents were pleased they could do something to contribute.’
When we opened the envelope and spread the petals on the table in front of us, their fragrance filled the air. Kate photographed the parents’ hands, holding the delicate petals cupped in their palms.
In the following session, Kate gave three bottles of rose inks to the parents. She had sorted the petals by colour and the inks ranged in shade, each one paler and more muted than the petals from which it had been made. The parents commented, ‘I like how they have changed, that they are so faint.’ We had already talked about ‘silent inks’, in which the material infuses the water without colouring it. These inks were not silent; they felt like a quiet presence in the room.
At the next session, the parents brought in their sketchbook. On one of the pages, there was a pencil drawing of a rose on the left-hand side and a heart on the right. Petals from the rose were blowing across to the heart. One of the parents explained, ‘I like the idea of somebody smelling the roses and the fragrance going up their noses and into their hearts.’ Kate animated the drawing for the film, assembling the petals from the rose into the shape of a heart.
For this family, roses were used to celebrate births and had also become an important way of remembering the lost twin. They formed a link across the generations and the act of collecting the petals enabled the grandparents to participate in the project. The concentrated fragrance of the petals in the inks evoked a parental wish that those who had not had a chance to know their daughter might still take her into their hearts.
In the first session of the Losing a Twin at Birth project, artist Kate Sweeney handed out sketchbooks to the parents, so that they could use the inks made in the sessions to draw images. I was also offered a sketchbook and I used it to record my thoughts on the sessions with the parents. I found that this way of notetaking enabled me to reflect on the language we had been working with, as well as on the process of ink making itself.
In our introductory sessions with the parents, we shared conversation over a cup of tea. As a way of demonstrating that inks can be made from the most everyday materials, Kate used the teabags to create an ‘ink’ that was brought into the second session and used to experiment with different kinds of mark making. We thought together about how the ink itself constituted an archive of the first session, preserving the tea that each person had chosen, and distilling an essence of our conversation.
Image credit: Anne Whitehead
In my sketchbook entry following the first session, I reflected on the language of infusion to represent both the ink-making process and the methodology of the project. Looking up infusion, I found the following definitions listed.
(1) to steep in liquid (such as water) so as to extract the soluble constituents or principles. This was resonant both with the immersion of the teabag in water to make the tea that we drank together in the session, and Kate’s further steeping of the used teabags to make the inks. The ritual of making the tea framed our conversation, acting as a model for how making the inks from the materials collected by the parents would facilitate our conversations about their experiences of loss.
(2) to cause to be permeated with something that alters, usually for the better. This sense of infusion develops the first meaning to suggest that the act of steeping can also be transformative, producing a change. This represented our shared hope that by making the inks and the film, we would be able to make a positive change.
(3) to inspire or animate. Kate’s film-making process involves the animation of drawings, and this meaning of infusion seemed to anticipate the ways in which she would imbue the parents’ ink drawings with something new, infusing them with a different life and energy.
In the second sessions with the parents, Kate gave them the inks she had made from the teabags. The liquid had darkened to a peaty colour, due to the effect of the materials used to preserve it. Kate explained that this was known in dye making as the ‘saddening’ process. As we explored the materials that the parents had brought in from their memory walks, we talked in greater depth about their experiences of grief, and the sessions felt that they too were infused with a deeper sorrow than our first conversations. My sketchbook page following these sessions reflects on the meanings of ‘to sadden’: (1) ‘to deepen colours by the addition of additives’; (2) ‘to cause to feel sorrow; to become sad’.
In the third session of the project, Kate gave the parents the inks she had made from the materials collected on their memory walks. We then used the inks to draw and write with. Kate drew a butterfly with water and dabbed in the inks, which diffused across the paper to suggest the shape of wings. Our conversations focused on the parents’ hopes for the film. They wanted the film to give comfort to other parents who had experienced the same loss by showing that, although the grief does not go away, it is possible to live beside it as a family.
Image credit: Anne Whitehead
My sketchbook notes following this session reflect on the meanings of diffusion. In science, diffusion refers to the spreading of one substance into another as a result of the random motion of molecules. This was what we had witnessed together, as the ink dispersed through the water on Kate’s drawing to form butterfly wings. By extension, diffusion also refers to the dissemination of knowledge, and this picked up the parents’ desire to circulate their experience to others through the film. As we watched the ink pull through the water, it felt to me that there was something there too of the lost twin’s delicate trace in the lives of the remaining family.
My sketchbook enabled me to think with, rather than about, the creative process that Kate was using to make the inks and film. My notes documented the ways in which aspects of the creative process infused our conversations, meaning that the language of ink making became expressive of the phases of the project itself.
