Looking at Lost Time, it might not be immediately clear what this object is or how to read it. The deliberately evasive title doesn’t help the viewer very much either. Nevertheless, the sculptures form and wearability captivate the imagination. This fragile object with its volumetric complexities of transitional shapes and spaces, the varying levels of translucency, and the repetition of the origami balloons have come together in this form to solidify a theme that has been present and growing in my work for a number of years. However, this artwork came about almost by accident. I was asked as a last-minute inclusion to participate in an exhibition. This show was held in a textile gallery and the exhibitions theme centred on the question: What are the hopes and aspirations we carry on our shoulders as vulnerable and compassionate human beings? Having recently returned from a conference focused on anamnesis and liturgy, I was interested in creating a work that integrated a clerical stole, dementia, and community. This exhibition gave me the opportunity to materially explore memory.
When one looks at the public perception of dementia it is profoundly negative, it has become a highly stigmatised illness. As a result of this negative perception people today are more afraid of developing dementia than cancer. The consequence of stigmatising an illness is it reduces people to labels, ideas, and abstract bodies. There is an inherent violence associated with stigmatisation. In relation to dementia the violence is subtle. There is an element of dehumanisation and detachment as the individual slowly becomes the label of their illness. Another social outcome for the person with a clinical diagnosis of dementia is they may become the misunderstood and scary villain to their close acquaintances. It is not uncommon for friends and family members to drift away from the person, stating: ‘I’d rather remember her the way she was’. As such, in the hypercognitive western society, where intellect and reason are prized over love and relational connections, the fear of loss of cognition drives our response to dementia.
It is this communal response to dementia that I wished to explore in Lost Time, in addition to how the community can reframe their response to the deep-seeded fear that is fuelled by the threat of losing one’s autobiographical self. The question is, therefore, who holds our memories? According to John Swinton, a theologian working in the field of disability and dementia, the memory problem is not with the person who has dementia but with their community. Swinton claims that a person cannot remember who they are without the help of others, as such identity is formed and given by the community that they inhabit. It is the identity given by one’s community that is the most fragile and vulnerable, as it is out of our direct control. As such you can lose yourself and your sense of belonging if your community loses connection with you and struggles to identify who you are becoming. What does this mean theologically in a community of faith when a person may be losing their cognitive agency and are facing increasing limitations?
Deborah Creamer, a disability theologian, makes the case for the application of embodiment theologies to be applied to people who are ‘differently-abled’. I would maintain that someone with dementia is ‘differently-abled’. Embodiment theologies argue that when we reflect theologically, we inevitably do it as our embodied selves, for our bodies influence our theological perspectives, as it is through our bodies that we experience and relate to God. It is the experiential aspect of embodiment theologies that led me to consider the notion of how body language, gestures, and touch can, for people with dementia draw seemingly lost memories into the present. I wanted to disrupt the assumption that all memory is linked to cognitive recall but can be experienced through our bodies with the aid of our community. How then does one depict embodied theologies, dementia and community visually?
In the work Lost Time, the materials of translucent paper and wool, in conjunction with the sculpture’s wearability, present the viewer with a visual metaphor of an embodied theological response to dementia. The translucent paper folded into origami water balloons functions symbolically on a number of levels. Firstly, the process of making origami balloons requires the creator to spend time preparing the paper square, pre-folding the creases, tucking the corners into the little pockets, and blowing into the deflated balloon to expand it to its final shape. This method of manipulating paper brings to mind the process of making memories. The very considered and ritualistic way we construct and breathe life into what we understand as meaningful for our own identity creation. Secondly, the choice of translucent paper, not opaque or transparent paper, adds to the notion that memories are created through communal transmission. The translucent paper points to the communicative action required for others to remember us. Likewise, the use of wool an organic material to stitch all of the memory balloons together, replicates the role of our neurobiology in the form of brain synapses, and the physical processes of embodied remembering.
However, to fully depict how community can respond to the ongoing cocreation and the holding of memories, the sculpture needed to be worn. The fragility of the sculpture indicates the vulnerability of our memories, and the act of wearing another’s memories implies the responsibility and privilege it is to journey with someone who is navigating the emerging ‘differently-abled’ person. The human experience is an evolving reality, and none of us will avoid being touched by the changing nature of our own physical and cognitive abilities. The purpose of Lost Time is to challenge our own perceptions of how God, community and self relates to memory.
[A version of this piece appeared in The Cooperative]