Learning from Experiences at the End of Life: virtual reality and co-creative pedagogies
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Introduction
Two weeks before his death on October 24, 2020, artist Matt Freedman partic-
ipated in a final session with the End of Life project—the artistic research that
Learning from Experiences at the End I have been leading with Pawel Wojtasik since 2012. Freedman had been living
with a terminal illness for many years. On this last day of our working togeth-
of Life: virtual reality and co-creative er, he rendered a series of three-dimensional drawings in a virtual reality (VR)
environment using Oculus Quest equipment. This was only the second time he
pedagogies had ever used these technologies. Our objective had been to utilize the Spatial.
io application—a virtual environment—as both a space for developing a new art-
work and a space for hosting a public art performance by Freedman. Confined
to a chair and attached to a feeding tube and oxygen supply, Freedman was
John A. Bruce limited in his mobility and sociality due to the physical impacts of cancer as well
Parsons School of Design, The New School, United States as the distancing measures in response to COVID-19. Despite the challenges
Freedman encountered during this period of dying, VR technologies presented
a unique opportunity for him to access new and renewed ways for practicing as
ABSTRACT Virtual reality (VR) spaces designed as dynamic atmospheres an artist, and for these activities to provide social vitality and embodied learning
for immersive exchange hold great promise in providing unique affordanc- through real-time virtual engagements.
es for how we might learn from experiences at the end of life. This research
explores life in proximity to death through engagements in real-time, virtual This short paper introduces a set of questions and initial propositions for
spaces and questions how we might effectively mediate confrontations with further explorations with VR and pedagogy as related to expanded notions of
mortality. In particular, this approach addresses and aims to collapse the care during experiences at the end of life. The artistic research presented draws
distances—geographic, physical, psychological, emotional, and social— upon experiments with methods that utilize performance-based and cinemat-
often created around dying. In the U.S., privacy often results in marginal- ic approaches for confronting mortality. Through an examination of examples,
ization where the dying person is removed from social exchange. Although pedagogy is considered in relation to encounters with people experiencing the
well-intentioned, this leads to isolation and loss of dignity, reducing the status end of life, representations of such encounters through moving images, and
of the dying person to that of a patient or simply a body in decline. COVID-19 the places where exchanges might support thought and action for care and
has exacerbated distancing around dying. Matt Freedman, a celebrated caring communities.
multimedia and performance artist who lived with a terminal illness for nearly
ten years, appears as one of five main characters in the feature-length Notions of proximity and duration as experienced through moving images and
nonfiction film End of Life (Bruce, Wojtasik 2017). The film is one element VR are themes of particular importance as revealed through the findings of this
of a larger research investigation that includes a series of moving images research. The effects of being close to people, things, and situations can often
and performance pieces that I directed and produced with Pawel Wojtasik. provoke participation in meaningful ways and in turn support modes for embod-
Over the course of more than six years, our collaborations with Freedman ied learning. Confrontations that unfold over time can create space, invite rec-
evolved from ethnographic film to multimedia live performances to experi- iprocity in relationships, and allow for emergence that supports contemplative
ments using virtual reality spaces that continued up until the two weeks prior learning. The initial findings and insights presented in this discussion support an
to Freedman’s death in October 2020. This paper discusses this trajectory argument for strategies in what Eve Tuck refers to as a desire-based research
and examines the moving image artifacts and virtual reality technologies that framework—an alternative to narratives of damage (Tuck 2009). While Tuck
guided the investigation, showing how these can contribute to participatory centers an argument in relation to community narratives that emerge as a result
design-based research and co-creative pedagogies focused on experiences of research processes, I propose that these frameworks can also apply to con-
at the end of life. temporary relationships regarding mortality and people experiencing the end of
life. Key questions of this ongoing research are: How might VR serve as a plea-
Keywords: virtual reality, third places, artistic research, surable and productive third place and embodied motion for those secluded due
embodied learning, mortality to conditions that demand being confined to home care, hospice or hospitals?
36 MODE 2021 Edited Conference Proceedings
It is useful to map the ways that Matt Freedman related to and shared about his
own mortality during collaborations with the End of Life project over the 6-year
period of working together, and consider these strategies as they relate to
the project’s research objectives and the emergence of experiments with VR.
Initially, Freedman agreed to appear in front of our cameras as part of the artis-
tic research that would eventually generate outputs that include installation
art works, transdisciplinary design curriculum, and the feature-length film
End of Life. He appears in the art works and film through his performance art—
telling stories and drawing upside down, reflecting on mortality and his own
experiences living with a terminal illness (Figure 1). His stories comprise
threaded anecdotes about mortality and his own terminal illness, at times direct,
at times poetic, and are humorous, whimsical, graphic with medical details,
philosophically provocative, witty and profound. The drawings he makes during
his performances are quickly rendered, masterfully stark, and cartoonish. They
are ripped from the pad hanging from around his neck and tossed to the floor.
Freedman appears healthy and energetic in the film, especially in contrast to
the other four main characters whose appearance indicates they are perhaps
Figure 1: Matt Freedman performing in the film End of Life, co-directed by John A. Bruce and much closer to death.
Pawel Wojtasik, 2017.
Embodied learning and the queer art of dying
During the premiere of the film End of Life at international festivals, and later
How might VR collapse the distances often created between the living and the during community events, Freedman often attended public showings and
dying? How might VR enable experiences at the end of life to include our bodies participated in post-screening discussions with audiences (Figure 2). Over time,
in multidimensional ways for participating and expressing ourselves—lived as and as his illness progressed, Freedman’s comments during these discussions
and not merely lived in (Sobchack 1984)? would include direct and sometimes bracing acknowledgments of his screen
image being one belonging to a healthier person—someone much farther from
Living in proximity to dying mortality. The physical decline brought on by his terminal illness was increas-
Matt Freedman was one of five primary interlocutors who shared their experi- ingly evident as he stood in front of film audiences as a dying person, bringing
ences during various stages of dying as part of the End of Life project—artistic mortality closer in ways viscerally reflective for Freedman and for those in
research that includes video ethnography, gallery and online installations the room. Mediated explorations with mortality were no longer limited to the
and performances, the feature-length film End of Life, the studio Design for abstract and safe distance of recorded representations. Affordances for
Living and Dying as part of the MFA Transdisciplinary Design program at embodied learning emerged through these shared experiences with film
Parsons School of Design, and, most recently, experiments with virtual reali- audiences where Freedman’s physical presence along with showings of the
ty. Freedman had become a collaborator in March 2014, and our work with him film End of Life collapsed the distances that are often created around dying
evolved from filmmaking, performances, and installations to experiments using people and the spaces they inhabit.
VR. Freedman’s art practice had featured sculpture and drawing, while his more
recent work focused on performances of telling stories while drawing upside Western culture, in particular, tends to imagine acceptable settings for dying as
down on a pad of paper hanging from around his neck. Having been diagnosed framed through images of rest, peace, and tranquility—conditions that can stir
with a rare form of cancer in 2012, Freedman documented his initial treatment desires for equating comfort with privacy. These ideas align with assumptions
as a graphic book, Relatively Indolent but Relentless: A Cancer Treatment that the end of life happens mainly within the temporality of deathbed scenes
Journal, published in 2014. and as such are primarily characterized by the discomforts of bodily decline.
Dying in this scenario is the end goal of being released from such conditions.
Learning from Experiences at the End of Life 37
Figure 2: Left: Matt Freedman, Pawel Wojtasik, John Bruce, and Kent Jones during the post-screening discussion for End of Life at the New York Film Festival, 2018;
Right: Matt Freedman, John Bruce, Pawel Wojtasik at the New York Zen Center during a screening of End of Life, preceded by a one-hour mediation and followed by a 90-minute discussion, October 2019.
However, dying might take place over many months or years and be character- Complex personhood means that the stories people tell about
ized by a wide spectrum of experiences, as was the case for Matt Freedman. themselves, about their troubles, about their social worlds, and about
Privileging privacy often does not serve dying people and rather serves others their society’s problems are entangled and weave between what is
who desire to remain distanced from any reminders of death. People farther immediately available as a story and what their imaginations are
from the end of life often work consciously and unconsciously to erase, or at reaching toward. (4)
least obscure, evidence of mortality as embodied by those closer to dying. In
this way, privacy is conflated with marginalization (Chapple 2016). Jack Halberstam proposes “Low Theory” in The Queer Art of Failure, as a way
to survive and thrive through acts of hacking and circumventing oppressive
Is it any wonder that dying people—those beyond medical rescue—often systems of control and discipline. Failure, according to Halberstam “pokes holes
become awkwardly removed from social exchange, given the pervasive neolib- in the toxic positivity of contemporary life,” (Halberstam 2011). Dying reveals new
eral attitudes that calculate relationship value in terms of the potential for future knowledge that does not point to a peaceful afterlife but pokes holes in the lives
productivity (Baudrillard)? Unfortunately, the possibilities during the final stage we have led. There are important and new things we can learn when we suspend
of living are often foreclosed by narrow perspectives similar to the ways in which damage narratives that stifle and instead, through desire-based research frame-
demands for efficiencies, transactional benefits, and profit-motives can dictate works, nurture expressions of insights during the end of life (Tuck 2009). Dying
choices throughout all stages of life. People farther from the end of life tend to is too often represented as either suffering or gently fading away, serenely with
recognize dying only in terms of diminished agency and capacity—the loss of stillness. The expressions of dying people can be vividly expressive, performa-
what had been central to identity in previous stages of life. Dignity is too often tive, and in motion. Why not celebrate and represent narratives of life near the
deemed not affordable (considering this term in the most expanded ways), and end as very much alive? The often-quoted opening lines from the Dylan Thomas
the dying person is thus reduced to criteria for medical accountability. Indeed, poem propose this idea, “Do not go gentle into that good night, Old age should
the loss of functional ability and autonomy can be very challenging, while burn and rave at close of day.” (Thomas 2017).
infantilizing those who are dying can cause emotional and psychological harm,
objectify people as patients, and ignore their complex personhood (Gordon
2011). Avery Gordon defines this as:
38 MODE 2021 Edited Conference Proceedings
Figure 3 (Top): Matt Freedman as avatar “endlessmatt” making drawings in a VR environment;
(Bottom): Matt Freedman at home using VR to make drawings, October 10, 2020.
Teenage Engineering’s OP-Z and its Topology of Sound and Visuals 39
There can be great wisdom, imagination, and vitality of spirit that emerges and working with Matt Freedman inside of virtual reality environments by way of
flourishes as unique to the stage of our becoming through unbecoming during the Spatial.io application, and simultaneously being in the same physical reality
experiences at the end of life. These evolved states of being might take forms room with him. All of us together in VR—Freedman, Pawel Wojtasik and I—were
of expression that are unrecognizable, especially for those close to the person immediately released from the mise en scéne of oxygen machine noises, feed-
experiencing dying. For instance, Freedman’s humorous drawings and stories ing tubes, salvia basin, and array of drugs and other medical devices strewn
about his experiences with radiation treatments for terminal cancer, an inability about his home where he was confined (Figure 3). We could leave the accou-
to swallow, the advent of extra hair on his legs from being immobile, skeptical trement that had tied him to illness, yet not deny these facts. Transported to a
visits to a psychic healer, etc., were met with bittersweet unease and varying fresh space, a blank canvas stocked and staged exclusively with the objects and
degrees of discomfort from audiences, friends, and family. Perceptions of a images of our choosing, we benefited from a third place that afforded expansive
dying person’s identity, as understood by those farther from the end of life, ideas and play. We were free to move and imagine within a bespoke environment
are often limited to images and narratives of loss. Under these conditions, it and toward speculative situations. Freedman had imagined the potential of
becomes extremely challenging to accommodate the kinds of space needed to staging a performance in VR. He could conjure 3D objects, draw in 3D, and tell
engage with new expressions of living as performed during the end of life. In this stories in a performative manner as a freely mobile avatar in his likeness, and
way, the potential usefulness of the illegibility of dying is hidden behind a certain while responding to and feeling the responses of people in real time.
kind of hyper-legibility of dying—a set of images and narratives that function
much like any discipline working to control and clean up unwanted messiness In VR, Freedman could perform his experiences with illness and mortality while
and mystery (Halberstam). At the same time, such control creates even great- not being entrapped or completely enclosed within the limits of disease and
er distances that prevent possibilities for learning about mortality and in turn dying. His reflexive actions defying the reality of his conditions could therefore
increases isolation that often results in fear, anxiety, depression, loneliness, model a unique process for audiences to in turn explore their own reflections
and despair. Herein lies the opportunities for VR and moving images to be concerning mortality. These reciprocal exchanges form the basis of a pedagogy
utilized in efforts to engage new narratives through embodied learning around fostering ways of being together to recognize the emergent narratives that
experiences at the end of life. celebrate living while dying, and thus work to collapse the distances created
around end-of-life experiences. The use of VR for designing conditions for
How might the parallel world of VR support efforts for rerouting or queering atmospheres where embodied learning can take place holds great promise
the entrenched damage narratives surrounding end of life experiences in for alleviating suffering for the dying and for the people close to and supporting
ways that honor and celebrate emergence? their situations.
VR affords a unique kind of third place where explorations of end of life
experiences might be shared in dynamic ways. A place that is not our home
or workplace (or a hospital or hospice facility, in this case) is referred to as a
third place, as coined by Ray Oldenburg, and functions not only as a respite
from everyday life activities but also as a generative environment that affords
new possibilities for reflection, expression and exchange (Oldenburg). Conver-
sation can characterize the discursive aspects of third places, while VR extends
affordances to include a variety of non-discursive ways to encounter other
people and things and to form bonds. VR spaces as third places can be
designed to enable neutral ground and shared navigated space that creates
access to possibilities and associations free from the confines of family,
caregiver, and professional relationships. This was particularly evident while
40 MODE 2021 Edited Conference Proceedings
WORKS CITED AUTHOR BIOGRAPHY
Baudrillard, J., & Grant, I. H. (2017). Symbolic exchange and death. London:
SAGE Publications. John A. Bruce is a filmmaker, designer, researcher, and educator.
Bruce, J. A., & Wojtasik, P. (Directors). (2017). End of Life [Video file]. United
His work involves participatory design-led research, narrative, and complex
States: Grasshopper Films. Retrieved from https://www.endoflifeproject.com/
dynamic systems. He directed and produced, in partnership with Pawel
Chapple, H. S. (2016). No place for dying: American hospitals and the ideology Wojtasik, the feature documentary End of Life, as well as many independent
of rescue. London: Routledge. short films and installations. His work has been exhibited internationally,
Freedman, M. (2014) Relatively Indolent but Relentless: A Cancer Treatment including: New York Film Festival, Cinéma du Réel, Museum of the Moving
Journal. New York: Seven Stories Press. Image, Doclisboa, Thessaloniki Film Festival, ICA London, Chicago Film
Festival, The Julliard School, and The Brooklyn Academy of Music, among
Gordon, A. (2011). Ghostly matters: Haunting and the sociological imagination.
others. He served as production manager and art director for a number
Minneapolis: University of Minnesota Press.
of feature films, and platform producer for several transmedia projects
Halberstam, J. (2011). The Queer Art of Failure. Durham: Duke University Press. addressing social issues. He is senior strategist at Forward Mapworks,
Sobchack, V. (1984) Inscribing ethical space: Ten propositions on death, repre- a consultancy.
sentation, and documentary, Quarterly Review of Film Studies, 9:4, 283–300
He is Assistant Professor of Design Strategy at Parsons School of Design,
Thomas, D., & Goodby, J. (2017). The poems of Dylan Thomas. New Directions.
and serves as Director of the Transdisciplinary Design MFA program where
Tuck, E. (2009). “Suspending Damage: A Letter to Communities” Harvard he co-founded the studio Design for Living and Dying. John recently served
Educational Review, Vol.70, N.3., 409–427. as the President of the Board of Trustees for the Flaherty Film Seminar. He
earned a BFA from the School of Visual Arts, and an MBA in Sustainable
Systems from Pinchot (Presidio). He was a 2015/16 Fellow at the Graduate
Institute for Design Ethnography and Social Thought at The New School.
Learning from Experiences at the End of Life 41
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