Curatorial Encounters with Disease, care, and diagnosis
By: Conor Moynihan and Natalie Fleming
In 2014, Conor Moynihan was diagnosed with recurrent, metastatic testicular cancer. This was not his first recurrence since his initial diagnosis in 2011, and it would not be his last.[i] This particular time, however, involved a multi-week inpatient stay in the hospital’s oncology ward for an intensive, high-dose chemotherapy treatment between the end of 2014 and the beginning of 2015. One day, he was walking around the ward with his mother to get a bit of exercise when they came across a woman in one of the common spaces. She had been around the ward for some time, taking care of her husband, who was also undergoing chemotherapy treatment. When Moynihan and his mother stopped to chat with the woman, she strangely—at least for him—asked his mother how he was doing, rather than directing the question at Moynihan himself. Even going so far as to avoid eye contact with him, she spoke about him as if he was not standing right there, fully capable of answering.Moynihan had received many treatments up until this point, including surgery, radiation, and chemotherapy, but being ignored by this woman was the first time he was ever made to feel like a patient.[ii]
After they parted ways, Moynihan kept thinking about this encounter. Why did the woman avoid direct contact with him? Even though she was clearly concerned for him, she negotiated those feelings through a conversation with his mother, who was, like the woman herself, a caregiver. The woman did not seem to ignore him out of malice, but rather due to a deep unease about Moynihan’s illness. Perhaps it was because his presence reminded her too much of her own husband’s illness, or maybe it was awkward for her to converse with a cancer patient who had lost his hair, was in a hospital gown, and hooked up to a mobile IV line. Regardless, it was clearly an unnerving experience for her compared to Moynihan’s own ease and familiarity with being a chemotherapy patient by this point. She was ill at ease, in the traditional sense, while he was ill and, in some fashion, at ease with it.
Dis-ease with disease, as an affective tension in and around illness experienced by encountering it, or living it, or both, was something Moynihan wanted to explore further in an art exhibition that grappled with these concerns. In fall 2015, Natalie Fleming, who ran one of the art galleries for the University at Buffalo (UB), sent out an open call soliciting curatorial proposals for the upcoming year. Fleming envisioned the gallery as a space to engage visitors in open discussions about complex and unusual themes. She asked applicants to propose thematic exhibitions that would bring new ideas and faces to the UB Department of Art, while still including a place for the local community in the exhibition. Having just started at the same university as a Visual Studies PhD student, Moynihan proposed the project Ill at Ease: Dis-ease in Art as an art exhibition that would center around the topic of illness—biological, physical, mental, societal—and its often tense and fraught position within American culture. Leveraging his own experiences with illness, Moynihan proposed the project to examine the ways in which illness is always more than just a diagnosis, becoming a way of experiencing and being experienced in the world. Fleming was drawn to this proposal because of Moynihan’s interest in exploring illness as a complicated and changeable social category through interactive works of art, performances, and group discussions. She had curated an exhibition earlier that year focusing on a reconsideration of the philosophy of humanism, entitled The Measure of Man: Rethinking Humanism in Art. This exhibition explored the limitations of humanism as a moral philosophy, as artists questioned the definition and privileged position of humanity. Moynihan’s vision of illness as an unstable social category provided Fleming with a new opportunity to continue exploring her curatorial interests through this focused lens.
Traditional curation, especially in the context of museums, has been rightfully criticized for presenting a constructed narrative as impartial fact. For example, in her discussion of decolonizing the Smithsonian, Claire Wintle has noted that “[m]useums are products but also agents of social and political change; they are influential in practices of identity formation, political negotiation, and economic development.”[iii] She goes on to argue that typical curatorial practice in mid-century United States museums “tended to discard the material evidence of modernity [in non-Western spaces] and cross-cultural encounters as proof of social ‘impurity’ and ‘corruption’ (as opposed to cultural dynamism),”[iv] making the art and objects of other cultures narrate alterity. This aligns with what Bruce Ferguson has described as a “speech act of an institution.” “If an exhibition of art is like an utterance or a set of utterances, in a chain of signification,” Ferguson aptly assesses, “it can be considered to be the speech act of an institution.”[v] Importantly, Ferguson recognizes that this speech act is neither neutral nor objective, but often masquerades as such through the museum’s architectural, sociological, and bureaucratic rhetoric of power. Building on these forms of power, he emphatically diagnoses, “when this institution speaks, it speaks exhibitions. It utters a kind of sense that it believes to be true.”[vi] In this way, museums, and thereby exhibitions, are performative, enacting truth as such through the speech act of exhibitions. Rather than objective and impartial, we assert it is important to always acknowledge that art exhibitions are curated from a particular point of view, one that can never be universal or have an unquestionable, objective claim to facticity; exhibitions are subjective even—or especially—when meticulously researched.
Further, if exhibitions are performative, then they also can be performed with a difference that subverts the ways meaning is made and imparted.[vii] It is in this manner of curatorial exploration that we, Fleming and Moynihan, are both drawn to what artist Darian Goldin Stahl describes as “research-creation.” She used this term in relation to the artwork that she produced in response to her sister Devan Stahl’s diagnosis of, and experience with, multiple sclerosis (MS). Discussing her practice of making art that visualizes her sister’s written descriptions of living with MS, Goldin Stahl explains:
Because there are multiple ways of learning and knowing, I found that realizing Devan’s narratives visually through research-creation would complement and add insight to her writing. My ambition is always to elicit tacit learning of the chronically ill patient through an honest portrayal of the chronically ill patient in ways writing cannot.[viii]
Similar to this form of research-creation, we envisioned Ill at Ease to be a research-curation platform, where research meant not just the preparatory work that went into developing the show, but also the process of learning and critical thinking that came out of the exhibition. As a form of research-creation, this initial project aimed to ask a series of interrelated questions: What is illness? How do you become bound to another through experiences with pathology? Is illness located in spaces beyond the body?
Rather than offering definitive answers or “truths” for viewers, the exhibition was laid out such that visitors confronted, confirmed, or challenged their own expectations about what illness meant, where it was located, and how it intersected with the spaces they navigated in their daily lives. Using this project to pose rather than answer these questions, Ill at Ease employed multiple formats of engagement (visual art, exhibition layout, catalog text, performances, talks, etc.) so we could, along with viewers and artists, dwell on these questions as a form of critical reflection. What the exhibition raised for us as curators, therefore, was the consciousness of how illness, disease, and pathology exceed individual corporeal limits and structure affective intersubjective, interobjective, and interspatial experiences. After this exhibition, we wanted to explore illness from other perspectives and points of entry. We planned two more curatorial iterations of the project: one on care and the other on diagnosis. Three Acts, Three Scenes: Your Care, My Care, Careful Care was realized in 2018 and responded to Ill at Ease by asking viewers to consider how we extend care to others, take ownership of our own care, and navigate the precariousness of the world. We are currently working on the final part of this project: an exhibition, tentatively titled Showing and Telling: The Limits of Vision and Speech, that explores diagnosis by probing the limits of knowledge based on sight and dialogue.
This tripartite project has manifested in multiple forms; in addition to our curatorial process of selecting, displaying, and structuring the exhibition, we have sought to expand our practices beyond what is on the gallery walls by creating catalogs and organizing workshops, performances, and talks. Further, our collaboration has been committed to creating exhibition experiences that are open-ended and allow for a wide range of interpretations that often challenge the very theses we originally proposed. To do so, we have sought to display art from a variety of media, from traditional paintings and live performances to mechanized dresses and sartorial videos, that solicit viewer involvement. We use multi-modal and mixed-media forms of curation and collaborative practices as exploratory formats to ask questions rather than pose readymade answers. In short, our exhibitions have been committed to drawing attention to issues of illness, collective care, disability, and diagnosis through participatory engagement. In this essay, we will discuss our curatorial praxis through our two extant exhibitions, Ill at Ease: Dis-ease in Art and Three Acts, Three Scenes: Your Care, My Care, Careful Care, before moving into a theoretical discussion of the third part of this series, the exhibition tentatively named Showing and Telling: The Limits of Vision and Speech. In the spirit of this practice, we have included with our discussion of the works and shows, the floorplans of the two extant exhibitions. These floorplans show where the works were installed and link to the accompanying wall labels with didactic information. Engaging with this text website will also impact on how we develop the final component. For example, for Showing and Telling: The Limits of Vision and Speech, the website component allows visitors to post and contribute their ideas to the topic. These dialogues may be integrated into the final exhibition and corresponding catalog. Ultimately, this website is an extension of our project to foster conversations about illness, care, and the politics of diagnosing pathologies in an open-ended format that pivots from our ideas to your conclusions.
[i]Conor Moynihan has been living cancer free since September 2016 as of the date of this publication.
[ii]This is jointly authored by Natalie Fleming and Conor Moynihan. For clarity and cohesiveness, we use names and third person pronouns when speaking about individual experiences and first-person plural pronouns when writing as co-authors.
[iii]Claire Wintle, “Decolonizing the Smithsonian: Museums as Microcosms of Political Encounter,” The American Historical Review 121, no. 5 (2016): 1493.
[v]Bruce W. Ferguson, “Exhibition Rhetorics: Material Speech and Utter Sense,” in Thinking about Exhibitions, eds. Reesa Greenberg, Bruce W. Ferguson, and Sandy Nairne (New York: Routledge, 1996), 183.
[vii]There is a significant body of literature doing exactly this work of rethinking exhibitions and curatorial practice to signify differently. For example, see: Jennifer Tyburczy, “Queer Curatorship: Performing the History of Race, Sex, and Power in Museums,” Women & Performance: a journal of feminist theory 23, no. 1 (2013): 107-124); and, Sarah Brophy and Janice Hladki, “Cripping the Museum: Disability, Pedagogy, and Video Art,” Journal of Literacy & Cultural Disability Studies 8, no. 3 (2014): 315-333.
[viii]Darian Goldin Stahl, “Lived Scans,” in Imaging and Imagining Illness: Becoming Whole in a Broken Body, ed. Devan Stahl (Eugene, OR: Cascade Books, 2018), 25.