Ill at Ease: Dis-ease in Art was the exhibition that launched this project. Curated by Conor Moynihan and under the direction of University at Buffalo Department of Art Gallery Director Natalie Fleming, the show was on view from April 13 to May 12, 2017, and included twenty-three projects (Figs. 1.1-1.3). The artists included in the show were selected through private invitation and an open-call solicitation format, resulting in the inclusion of fifteen artists: Molly Alloy, Frani Evedon, Carrie C Firman, Joan Giroux, Phil Hastings, Ames Hawkins, Shan Kelley, Vika Kirchenbauer, Rain Lucien Matheke, Ann Moody, Van Tran Nguyen, Christopher Tanner, Moira Williams, and Vincent Tiley. The decision to include an open call component was essential to the show’s thesis, which aimed to complicate and unpack what illness, disease, and pathology mean through the inclusion of multiple interpretations and presentations. The exhibition presented the curatorial challenge of bringing together diverse understandings of illness and wellness to tell a coherent story. As part of a research-curation format, we were not seeking any particular representation of illness; rather, we wanted to work with what was proposed to us through the open call. Submissions included works dealing with an array of “illnesses,” but we selected artists that worked with and against each other. 

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As Susan Sontag’s words in the epigraph to this section suggest, illness is, perhaps strangely so, rather normative; it is an experience that one can realistically anticipate, if not fully predict. According to disability studies scholar Leonard Davis, illness, both acute and chronic, is in ascendency as the World population over the age of sixty-five reaches a record high. As Davis explains, with this change in the global age distribution, “[t]here will be increasing rates of cancer, kidney failure, diabetes, mental illness, and other chronic, degenerative illnesses such as cardiovascular disease.”[ii] Despite its commonality, illness often comes with stigma that carries negative connotations. Disease is often rhetorically framed as something that is best avoided—a strange side-lining of lived reality. As Sontag poetically describes it, “Illness is the night-side of life, a more onerous citizenship.”[iii] Taking Sontag’s description seriously, living with illness comes with consequences that can result in unequal access. As they moved through the exhibition, visitors were challenged to think aboutwhat illness meant for themselves and what constitutes this form of “onerous citizenship.” Including works that addressed topics as diverse and far-ranging as the HIV/AIDS epidemic and transgenderism, Ill at Ease suggests the need to think about illness not just from the vantage of those in the “kingdom of the sick,” but also those in “the kingdom of the well.” After all, there is no point in time that these categories ever exist in such neatly divided spaces.

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To address illness as varied experience, we had to map the curatorial layout and organize a thesis that would cogently arrange the show within the gallery space. Based on the works selected, we chose to split the gallery in the center by positioning a moveable wall on an angle approximately perpendicular to the longest walls of the room. The show was then divided into three parts that each centered on a smaller theme: inside the body, between bodies, and into the spaces that bodies inhabit. The idea was that as visitors moved through the exhibition, they would first be faced with works that conform with prevailing notions of what illness was and then transition to considerations of how illness connects multiple people together. Finally, the show was planned to end on work that took the idea of illness and relocated it into non-corporeal spaces, such as institutions, to highlight how illness impacts people beyond experiences with and through the body. This extension of the ill subject beyond the body, as circumscribed by data markers such as “mortality and morbidity rates, reproductive rates, disease and disability rates, zones of toxicity and safety, prognostic and predictability factors and health risk calculations statistics, age-of-population pyramids, health disparities and quality-of-life coordinates,” into socio-political space aligns with what David Mitchell and Sharon Snyder have named the biopolitics of disability.[iv] While largely beyond the scope of this project, it is worth noting that biopolitics regulate and discipline populations through the bodies of individuals; likewise, through the biopolitics of disability, we can understand how the state and other institutions pathologize non-normativity and commodify health as a method of social control as we will touch on in the end of this section.[v]

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The show opened with Rain Lucien Matheke’s 2015 works Untitled (Ghost Hand) and Untitled (Ghost Cube) (Figs. 1.4-1.5), archiving her experiences with a chronic illness that requires monthly intravenous infusions of immunoglobins (IVIG) to treat antibody deficiencies.[vi] In Untitled (Ghost Hand), Matheke made a resin cast of her hand connected by medical tubing to a glass jar used to store the IVIG. Upon closer inspection, one can make out flakes of a dried red residue in the medical tubing, traces of Matheke’s blood. Relatedly, Untitled (Ghost Cube) is a small resin cube filled with medical paraphernalia that one might accrue after a visit to a hospital: plastic identification wristbands, blue medical tape used to secure IV lines to the arm, and more medical tubing. As a pair, Matheke’s work opens the show through an individual’s experience of illness but immediately expands representations of illness to the banal medical paraphernalia that managing such an illness requires. As Benjamin Kersten elaborates, “Matheke locates the body within a complex network of repetitive treatments, disposable equipment, and methods of preservation…these two works propose a politics for uncertain times, a politics which embraces the interdependences of bodies and the objects and feelings that manage and influence them.”[vii] It is precisely this connection between one’s experience with illness as a “politics of uncertain times” that resonates within this section of the exhibition, and throughout the rest of the show.

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Likewise, these works gesture to the ways in which illness is an experience with precarity, connecting the inside to the larger outside world. Frani Evedon’s x-ray images-turned-photographs (Fig. 1.6) seek to bring the viewer’s eye into the body in an attempt to make visible the source of chronic pain. Beautiful and haunting, these works probe beneath the body’s surface in order to use medical imaging for new imaginings. Phil Hasting’s 13.1.20.20 [7][13] video diptych (2014) also visualize the interior of a body, in this case undulating between states of wellness and disease, highlighting how the space between health and disease—at least on the cellular level—is ever shifting. Molly Alloy’s 2016 Resting Place (Appendix, Fallopian Tubes, Uterus, Ovaries, Cervix) series (Fig. 1.7), commemorates and mourns the loss of organs removed during an emergency procedure, lingering on the affective implications of what it means to lose a part of your body.

 

We believe that it is crucial to include a diverse range of media in our exhibitions so that viewers, as they move through spaces, are challenged to not only think more expansively about the show’s thesis but to also find other modes of physical engagement. The inclusion of performance became a useful way to engage visitors because it broke down the barriers between art object, artist, and viewer. Rather than being about illness in the abstract, performance and performative works that solicited gallery visitors was a way to connect people on a more immediate, even visceral level. For example, as part of this first section on illness and the body, we included a work by artist Ann Moody, performed on opening night. Sad Sack (2015) involved Moody dressing up in an array of greyish-white nylon tentacles stuffed with a variety of textile material. This work entirely covered her face and hung down her body. Without any announcement, she entered the gallery during opening night, walked past puzzled onlookers, and laid down on the floor, where she remained motionless for approximately 120-minutes (Fig. 1.8). The work allows her anxiety, especially produced by being in a crowd, to become material. For those who saw Moody enter, the performance sparked an internal anxiety about the well-being of the performer, while those who came to the show after Moody began her performance were forced into an uneasy proximity with a form that was not readily legible as either a living person or an inanimate art object. This sparked its own form of anxiety as viewers actively studied the work, attempting to see if the piece moved and belied the living presence of the performer.[viii] What is particularly successful about this performance is that it causes viewers to grapple with the experience of anxiety. Similar to the physical pain invoked in Evedon’s work, states of anxiety, depression, and similar mental conditions can be hard to express to those not experiencing them. Moody’s work helps viewers contend with anxiety as the artist’s presentation of her own condition potentially triggers it in others. From a curatorial perspective, this work posed a unique challenge. As a performance, Sad Sack could only be seen truly once it was situated within the context of a viewing, uninformed audience. We had no way to know in advance, and when visitors encountered it for the first time, we, too, were having a unique experience with it. In other words, it became an experience through which we learned more about the very topic on which we were curating. Nestled between Alloy’s commemoration to organs lost and the unnervingly, mechanically moist sounds of Hastings’ video diptych, the gallery space was suddenly flooded with an uneasiness that would have been impossible to totally calibrate in advance. Viewers stepped gingerly around Moody, exploring the works around her. Rather than the traditional mode of curation, where knowledge is selected and presented for the viewer by the curator, here we learned and felt alongside our exhibition’s attendees. Curated this way, it heightened the sense of being in a body that this part of the show aspired toward. Like the rest of the works in this section of Ill at Ease, Sad Sack represents illness in a form that forces viewers to contend with the affective baggage of illness for more than just its host.

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This second section of the show focused on illness as related to other people. This is a section that includes works by artists dealing with others’ diseases and diseases’ position among people. Because of the interpersonal and inter-relational aspect of this section, many of the works included in this section are performative. Artist Moira Williams performed on opening night as a part of her work Not everything that counts can be counted: A Microbe Monopoly Game (Fig. 1.9). This performance was a demonstration of her game, an interactive work installed in the gallery space. While her work is not about illness in a traditional sense, Microbe Monopoly encourages players to build connections with other players and create communities centered around wellness. The game includes scobies as currency, but players were encouraged to set the rules for their own iteration of the game.[ix] On opening night, Williams led people in engaging with her work, while initiating dialogue with participants on topics related to wellness and the environment. Ames Hawkins also provided a performative work in this section of the exhibition, entitled Paper Violets, Vellum Prose. This work included custom-designed wallpaper featuring an all-over violet design lined with prose written by Hawkins, a pew sourced from the church that she attended as a child, a windowpane with images of violets and chapters of her writing, and an audio component of her reading these works (Fig. 1.10). Through the textual and audio components, Hawkins details her experiences of taking care of her father as he was in the late stages of HIV/AIDS. An organizing element of this work is her father’s African violets, which Hawkins inherited after his death. She continued to care for them, this act becoming a way for her to continue to have a relationship with her father after his passing. The installation encourages viewers to spend time reading and listening to Hawkins’words, which are further facilitated by the fact that she created violet-themed cushions for the pew where visitors sit down and think about death and illness—and importantly, they did. It was a work of slow discovery for viewers as it presented many points for initial contact and viewers during the opening could be seen walking around the window pane or sitting down and listening to the recordings. Between the wallpaper and the pew, viewers had a chance to quietly contemplate illness, considering the ways in which illness has touched their own lives. Hawkins and Williams provide two performative works that stress interpersonal relationships; however, Williams’ work necessitates interaction with other people in the gallery space, whereas Hawkins’ work provides a space for internal reflection. Williams’s piece in this section was an interactive board game loosely based on Monopoly; but unlike Monopoly, in Microbe Monopoly the viewers created the rules of the game on their own, traded materials, touched mushrooms, and drank kombucha (if they wished). The game became a work only when activated by those who used it, and Williams was present at opening night to engage people and lead them through the various, open-ended ways with which her game could be interacted. These kinds of works were essential to the show because it was through interacting with them rather than observing them that meaning was made by the viewers.

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Also included in this section were works by Christopher Tanner, Van Tran Nguyen, and Joan Giroux whose works put pressure on thinking about illness as more than an individual condition. In fact, taken together, this part of the exhibition foregrounds how even the smallest aspects of personal health reverberate into larger circles of social connectivity. For example, Giroux’s work opening space: conversations about death and dying (Fig. 1.11-1.12) was a live performance that centered on a discussion on death, dying, and end of life, which are central themes in her larger body of work known as Life Review. For this performance, she asked participants—while dressed first in dark green scrubs and then in a 1950s-style nurses uniform—to share experiences they have had with death and the “changes it brought about” for them by writing the experiences down on printed cards.[x] For example, someone wrote about the loss of their loved one to stomach cancer, noting that it was a “quick death” that led to “turmoil in family dynamics” and “a hole in [their] lives.”[xi] A significant amount of the stories shared were about cancer, but another participant wrote about losing someone to suicide related to bipolar disorder, which brought about “more therapy, more fear, and more tension.”[xii] What this performance documented was the way an individual’s illness and fatality has strong implications for the health and wellbeing of many others, highlighting the porousness between Sontag’s kingdoms of the well and the sick. From a curatorial perspective, Giroux’s performance helped us track and understand what audience members were bringing with them to the performance, and what they were brought to reflect upon while in the gallery space. Importantly, and like Moody’s Sad Sack, we curated this exhibition before we could even understand how it would transform the thesis of the exhibition. It put us as curators in the same position as the gallery visitors; the platform of the research-curation opened further, bringing in new information about illness through the experiences shared by those involved in the performance. Giroux’s performance helped activate people’s lived experiences as part of the exhibition, becoming an aesthetic of healing and living through encounters with death and dying.

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 The final section of the exhibition demonstrates how illness not only connects people, but is intertwined within our institutions. Carrie C Firman’s Republic of Ill-Diagnosed Persons Passport provided a great entry point for these themes (Fig. 1.13). Firman creates passports for people who have lived in the “Republic of Ill-Diagnosed Persons.” Rather than accruing stamps for new places traveled, like a traditional passport, these documents carry stamps for different experiences with illness and chronic health issues. While passports typically have a rules page that applies to state mandates and laws, Firman’s work has rules for people living in chronic states of illness, outlining such things as health insurance and the need for regular medical examinations. These darkly humorous passports stress how illness raises issues concerning movement through and access to physical spaces, extending beyond the traditional medical sphere. As Elif Ege points out, “[B]eing a passport, the work is also an invitation to rethink the relation between the individual and national bodies at the intersection of illness, health and citizenship.”[xiii] According to Ege, the work raises the questions, “Which bodies are free to move around? And, how does the dichotomy of healthy/ill complicate this question?”[xiv]

 

As Firman’s work and Ege’s writing point out, illness is tethered to spaces, institutions, and political arrangements. Also included in this section, Vika Kirchenbauer’s video LIKE RATS LEAVING A SINKING SHIP (2012) demonstrates how illness and pathology are not necessarily “problems” of the body, rather, they might be medicalized and moralized impositions created to regulate certain populations, such as transgender, non-binary, and genderqueer people [xv]. Kirchenbauer’s work is a montage of found video segments overlain with the artist narrating her experience with the medical community during her transition (Fig. 1.14). In the video, she describes a feeling of not fitting into gender and sexual identity categories, interspersing these recollections with medical records that detail doctors’ observations of her. These medical observations were part of her medical files and were used in order to allow her to transition. What becomes apparent through the video is that in order to be recognized as trans, Kirchenbauer had to satisfy the presupposed “script” of trans-ness as a medical pathology. The work represents the complex negotiation between the artist and the medicalized state in determining her own claim to gender identity. This work closes the show because it connects illness and disease, as understood by the medical community, to social and political structures of being in the world.

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The process of curating this show was an active form of open-ended research that involved a diverse range of stakeholders. As previously mentioned, the works for this exhibition were selected primarily through an open-call that solicited work that responded to the themes of the show. Even the very meaning of what illness is and what it might look like in art was negotiated. Moynihan wrote the open call, but people proposed works based on their own understandings of illness and disease. While the show began because of Moynihan’s experiences as a cancer patient and his understanding of the topic, the goal of the show was not to centralize one individual’s experience with illness, but to demonstrate that illness is a deeply structuring part of life despite whether one identifies or not as ill. These themes seemed to resonate. In his review of the exhibition, Dana Tyrrell concluded by writing,

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Illness not only touches individual bodies, but it infects spaces those bodies encounter and often exceeds the ways in which we are capable of receiving it. It is exhibits such as these, which take on a revised cadence in our current political climate that implore us to remember how our societal body has fallen ill before, and ask us to care for each other and our future.[xvi]

 

It was precisely that unclear border between physical body and social body, illness as lived reality and illness as metaphor, that this exhibition aimed to intervene. And through that intervention, we also wanted to challenge our own expectations as much as we sought to challenge the expectations of people who came to see that show. It became a form of research that did not posit definitive conclusions, but rather, helped build connections between people and ideas under the umbrella category of “illness.”

 

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[i]Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors (London: Picador, 2001), 3.

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[ii]Leonard Davis, Bending over Backwards: Disability, Dismodernism & Other Difficult Positions (New York: New York University Press, 2002), 24.

 

[iii]Susan Sontag, Illness as Metaphor and AIDS and Its Metaphors (London: Picador, 2001), 3.

 

[iv]David T. Mitchell with Sharon Snyder, The Biopolitics of Disability: Neoliberalism, Able nationalism, and Peripheral Embodiment (Ann Arbor: University of Michigan Press, 2015), 8-9. Mitchell and Snyder are building on a large body of literature on “biopolitics,” stemming from Michel Foucault and developed by Giorgio Agamben, Michael Hardt, Antonio Negri, and Jasbir Puar, among many others. 

 

[v]For more on this, see also: Jasbir Puar, “Prognosis Time: Towards a Geopolitics of Affect, Debility, and Capacity,” Women & Performance: a journal of feminist theory 19, no. 2 (2009): 161-173.

 

[vi]All internal images within this text are installation photos. This is to capture the curatorial context within which they were exhibited. See the corresponding website to investigate any individual work or artist in greater depth.

 

[vii]Benjamin Kersten, “Rain Lucien Matheke,” in Ill at Ease: Dis-ease in Art, ed. Conor Moynihan (self-pub., 2017), para. 3.

 

[viii]After opening night, the costume remained on the space where Moody had performed for the duration of the exhibition.

 

[ix]Scobies in singular form is scoby, which stands for symbiotic culture of bacteria and yeast.

 

[x]Audience response card, opening space: conversations about death and dying, April 26, 2017. Permission to share this card granted by respondent.

 

[xi]Ibid.

 

[xii]Ibid.

 

[xiii]Elif Ege, “Carrie C Firman,” in Ill at Ease: Dis-ease in Art, ed. Conor Moynihan (self-pub., 2017), para. 2.

 

[xiv]Ibid.

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[xv] For more on related gender and sexuality identity terminology, see: “GLAAD Media Reference Guide – Transgender,” GLAAD, accessed February 16, 2020, https://www.glaad.org/reference/transgender. 

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[xvi] Dana Tyrrell, “Ill at Ease: Dis-ease in Art at University at Buffalo Art Gallery,” Buffalo Rising, April 25, 2017, https://www.buffalorising.com/2017/04/ill-at-ease-dis-ease-in-art-at-university-at-buffalo-art-gallery/.

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