By Sara Reisman
How do we begin to understand the crisis surrounding health care in our culture? When we speak of health, we often speak with urgency about disease that has advanced to the point of emergency. When we speak about health, do we have a sense of agency in the decisions we can make, or, are our options for health care predetermined by external forces? When we speak about physical health, is our perception based on unrealistic ideas of permanent youth and related notions of beauty? When we speak about health, do we envision a process of transformation or a cure as the sole outcome? Perhaps we can begin to understand health as the construct that it is: illusive, often externally defined, conflated with lifestyle choices and the righteous appearance of responsible self-care. In the Power of Your Care seeks to pick up, begin, and perhaps advance a conversation about the relationships of care that are essential for the well being of any community.
Asked in the first person singular, How Do I Begin? is a question that warrants repetition. Posed by the late artist Jo Spence in her “Photo-Therapy” series of portraits made in collaboration with Rosy Martin, her 1982-83 A Picture of Health: How Do I Begin? takes the diagnosis of breast cancer as a starting point. This beginning, in which the artist projects the uncertainty of a new future, is one in which remission or full recovery is unclear. The portrait is frontal, with an X drawn above Spence’s left breast, signaling the impending mastectomy. The artist looks directly into the camera, clothed in a sheet wrapped around her chest. In her collaboration with Rosy Martin, Spence’s portraits moved away from a traditional, controlled representation that involves the display of a specific and intentional aspect of one’s character. Instead, the two artists drew from techniques of cocounseling, psychodrama, and reframing, as a way of recognizing Spence’s new visual self that emerged from cancer, and presenting that for the camera. Through this Martin and Spence came up with an alternate way of picturing health, one that involved reclaiming her body from illness, taking ownership of the disease, and refusing to be subsumed by the uncertainty and loss it inevitably brings.
Portraiture of the self and others figures into the exhibition with artworks by caraballo-farman, Jordan Eagles, Fred Tomaselli, and Hannah Wilke. Wilke’s Truth or Consequences (1991) and Untitled (1992) are suites of three photographs that, like Spence’s A Picture of Health: How Do I Begin?, echo the portraits of generals at the beginning of a war. For Wilke, it is a war against disease. The two sets of Wilke’s “performalist self-portraits” are part of a series meant to challenge erotic stereotypes, all the while pointing to the ironies of conventional poses and characteristics associated with femininity. They can be read as “before” and “after” portraits documenting the changes she experienced over the course of her treatment of lymphoma. Taken together, the triptychs are also reminiscent of mug shots, simultaneously conveying defiance and shame in this augmented identity. Wilke’s Why Not Sneeze (1992) is a sculptural portrait in which the artist paid homage to Marcel Duchamp’s Why not Sneeze, Rose Sélavy? (1921), an “assisted” readymade in which a birdcage has been adjusted by Duchamp, filled with 152 white cubes made of marble. Wilke’s 1992 “assisted” readymade is a found object (the birdcage) filled with a collection personal effects (emptied prescription medicine bottles, syringes, and other medical paraphernalia). The cage is a metaphor for the body, conveying the sense of enclosure, the entrapment of illness, in which the consumption and waste of medical products is inescapable.
Turning the gaze outward and upwards to the stars, Fred Tomaselli’s non-figurative portraits are made up of celestial maps. The astrological constellations related to his subject’s birth signs have been overlaid with labels indicating the over-the-counter medication, foods with medicinal properties, prescription drugs, and illicit substances taken by each individual. These portraits reflect how the chemistry of medication, when taken with or without a prescription, combined with culturally constructed belief systems, contributes to the formation of an individual’s state of being.
Ongoing projects by Jordan Eagles and caraballo-farman make visible the interior aspects of health that we are normally unable to see, such as blood and tumors. caraballo-farman’s Contemplation Source Room (2016) visualizes cancer in a sound and light environment that brings together 3D prints of tumors, the sound of an MRI scan, and chants from a shamanic healing ceremony. In their depiction of the tumor, caraballo-farman demystify the invisible enemy, claiming it through representation thereby neutralizing its overwhelming power. In a similar vein, Jordan Eagles’ work with the blood of cows, and more recently, the blood of gay men, highlights the bodily fluid most associated with the transmission of disease through transfusion. Over the last several years, Eagles has been engaged in an activist campaign against the ban on blood donations from gay and bisexual men, an early national policy put in place by the Food and Drug Administration in response to the AIDS epidemic. With his site-specific Blood Illumination, Eagles layers slides of dried blood donated by gay men that when projected, create an environment that raises questions about mortality, spirituality, and science. Even with the FDA’s recent announcement allowing gay and bisexual men to donate, conditional on one year of abstinence prior to their donation, as well as technological and scientific advances ensuring adequate testing of all donations, prejudices remain around the association of gay male culture and HIV.
Visual artists have long sought to understand and represent the human body and its conditions. From Leonardo da Vinci’s Anatomical Manuscripts (1510-11), which were the first to visualize the skull, spine and heart, to Thomas Eakins’ Portrait of Dr. Samuel D. Gross (Gross Clinic), 1875, and his many paintings of surgical procedures, artists have continually developed new ways to express the human condition, whether it involve detailing the human form from an external perspective, or the body as experienced from within. In the Power of Your Care weaves together narratives of health as an investigation into the politics of care in the broader context of our culture. In the United States, healthcare policy has the reach to impact issues around accessibility, disability, trauma and disease, as well as societal issues like homelessness. The exhibition title includes the words power and care, specifically your care, as a way of implicating the community surrounding the exhibition in a dialogue about our responsibilities in caring for ourselves, and one another.
In Ana Mendieta’s film X-ray (1975) she utters the vowels in a speech test, transmitting the basic components of verbal communication. Mendieta’s X-ray film echoes Da Vinci’s exploration of the interior of the body, employing 20th century means to capture how humans create sound. Her utterances speak across time to the curative voices of the MRI nurse and shaman that can be heard in caraballo-farman’s Contemplation Source Room.
Situating his artwork within a science fiction medical setting, Frank Moore’s paintings characterize the surrealist experience of treatment, from the bureaucracy of hospitalization to the anxieties that came with experimental medical treatments for HIV. In Arena (1992) Moore presents the chaotic interior of a hospital in which the central figure is at the mercy of his caregivers.The maze-like configuration appears to be modeled after an anatomical theater where doctors learn procedures. Within the theater, there is a convergence of dissonant elements ranging from a hot dog vendor one might find at a stadium event, to a range of skeletons–humans, apes, and birds, hinting at our evolution as a species, and how this slow transformation is in part guided by medical practices. A white cloud, perhaps a spirit, hovers above the patient’s body as new patients are wheeled in and out of the arena, as the cycle of life continues.
The late Spanish artist Pepe Espaliú engaged with the coexistence of suffering and pleasure, as well as injury and resulting isolation. After being diagnosed with AIDS in 1990, he refocused his practice towards the history of the AIDS crisis and the support network that emerged in the 1980s and 1990s. Espaliú’s sculpture El Nido (The Nest), 1993, is a ring of crutches that elegantly conveys the interdependencies necessary for survival. The interlocking nature of El Nido’s design represents a sculptural manifestation of his later performances (called “carrying performances”) in which he was carried by his friends through the streets of San Sebastian, Spain, as a way of articulating the impact AIDS had on his body. On a more intimate but no less significant scale, Hunter Reynolds’ video Medication Reminder (2015) pays homage to the networks of care and support within the communities affected by HIV, specifically the unwavering commitment of Kathleen White, a close friend of Reynolds who called him on a daily basis to remind him to take his medication. Medication Reminder generates some of the most buoyant visuals in the exhibition, a video collage in which hands, pills, glitter, and sand undulate, suggesting that even in the everyday grind of giving and receiving care, the mundane and grotesque can be transformed and elevated into moments of beauty, even without a cure in sight.
A recurring aspect of the AIDS epidemic was oppression through the silencing of those affected by the disease. Andreas Sterzing’s photographic portrait David Wojnarowicz (Silence=Death); New York (1980/2014) depicts Wojnarowicz with his mouth sewn shut, a strikingly gruesome metaphor for the unspeakable and under-recognized realities of living with HIV at that time. Also included in the exhibition is Untitled (7 Miles a Second), 1993, which Wojnarowicz wrote in the last years before his death in 1992. With artwork by James Romberger and Marguerite Van Cook, the graphic novel narrates the story of Wojnarowicz’s youth spent hustling and his later years living with AIDS. 7 Miles a Second portrays the rage, urgency, and disavowal of the death and silence that permeated the official politics of the time. For many who were infected, the gay community’s first waves of activism against being silenced could not come soon enough.
Trauma is a thread connecting many of the works in the exhibition. In some cases trauma can be a side effect of living with AIDS in the dark ages of the disease’s emergence, or a product of undergoing cancer treatment in a medical environment, and some in the medical establishment acknowledge the causal link between trauma and disease. Like early HIV treatment, both the needs of the patient and the tendencies of the symptoms have often been misunderstood, or administered to with little nuance. Care providers like Kathleen White, whose voice is Hunter Reynolds’ Medication Reminder, are also susceptible to secondary traumatic stress. Many friends, family members, and lovers dedicate long periods of their lives to care for others, giving up years of their own pursuits.
While the presence of trauma is not limited to medical conditions, it can lead to both mental and physical illness. In American culture, homelessness is often seen as personal failure, one that is primarily about financial competency, yet the impact of economic instability on mental health has been well documented. As the economic gulf between haves and havenots continues to widen, and the stigma that surrounds and separates the homeless from the rest of our society grows, how do we begin to understand homelessness as a condition? Jody Wood’s Beauty in Transition (2014) is a valiant step towards bridging that gap on a poignantly intimate scale. Wood operates a mobile beauty salon in a retrofitted ice cream truck, offering free services to homeless individuals that, according to the artist, are conceived to “facilitate empathic understanding and to unravel the reductive label of homelessness.” Wood’s video and photographs of her salon clients convey the transformative potential of touch as a type of care that is sorely missing in many people’s lives.
The culture of war also produces trauma, which permeates the daily lives of soldiers and civilians throughout the world. Rajkamal Kahlon and Mladen Miljanovic archive a range of experiences of post-traumatic stress disorder connected to military engagement. Kahlon’s Untitled Series of Autopsy Reports (2011) is part of her ongoing project Did You Kiss the Dead Body?, the title of which refers to the final line in Harold Pinter’s poem Death. Kahlon’s project serves as a critique of U.S. military policy that also seeks to commemorate Iraqi and Afghani detainees who were killed in U.S. detention centers. Kahlon began the series during her residency with the American Civil Liberties Union (ACLU) in New York City after the ACLU published the autopsy reports and death certificates from U.S. military bases in Iraq and Afghanistan. She focused on these documents to make the violent legacy of the foreign policies of the Bush and Obama administrations’ visible. Kahlon states, “The residency was a way to explore the philosophical gap between my view as an artist, engaged with ideas of empathy and remembrance, and the legal perspective of these documents as rational instruments serving justice.” The violent cultural memory embedded in this history affects those who were detained, including those who survived, as well as the Afghani and Iraqi communities these individuals left behind.
Miljanovic’s Show Where it Hurts with Your Hand (2012) presents a more personal insight into the after effects of combat, documenting written communication between two people: a man incapacitated due to post-traumatic stress disorder following military service and his wife who cares for him. The twenty-one hand-written notes are drawn from nearly a year’s worth of communication, and convey the brutal day to day reality of the couple’s interactions, revealing the mindset and physical existence produced by war. Messages between the couple include:
YOU SHIT IN
DO YOU NEED
TO GO AGAIN
THERE WAS AN
I’LL BE IN
Miljanovic refers to the post-traumatic stress disorder as a disability, calling into question how we define disability, whether it is a permanent state or a temporary condition.
The act of naming a disease, and the subsequent effects of its naming are taken up by Sunaura Taylor in her work. Philosopher and gender theorist Judith Butler writes, “One is, as it were, brought into social location and time through being named…The name constitutes one socially, but one’s social constitution takes place without one’s knowing.” Our sense of agency in relation to our individual health can be psychologically damaged by this act of naming. Positioning disability as a political issue, Taylor’s recent works on paper explore the visual discourses of disability and, as she notes, how her practice can become “freaked” when viewers learn that she paints with her mouth instead of her hands. In her paintings, which begin with medical photography, she whites out individual identities by literally obscuring the eyes and other identifying features in order “to remove disability from the gaze of medicine and pathology while giving back privacy to the individuals in the images.” Her piece Intersex (2011) recognizes the struggles faced by intersex individuals whose gender identity is not fully acknowledged as a disability by the Americans with Disabilities Act. They are often met with confusion produced by cultural attitudes toward gender binaries, much like the awkwardness and disdain projected onto individuals with disabilities by non-disabled people.
How are we to think through our own responsibilities towards individuals with disabilities without imposing societal ideas, many of them generalized and misguided, about disability? Carmen Papalia’s Open Access Banner (2015) questions the institutionalized nature of the culture of accessibility and policies that are conceived to assist individuals with disabilities. Without using the word disability, he establishes the fluidity inherent in accessibility as a community-based framework:
“Open Access interrupts the disabling power structures that limit one’s agency and potential to thrive… Open Access relies on who is present, what their needs are, and how they can find support with each other and in their communities. It is a perpetual negotiation of trust between those who elect to be in support of one another in a mutual exchange.”
Papalia’s proposition for Open Access is the essence of a responsive and engaged community, one that encompasses flexibility, agency, and a “complexity of embodiment.” Another way he promotes this is through participatory performances, in which he leads participants on non-visual, or blind walks. Presented in multiple cities and a few rural locations, the performances enact the interdependencies required for Open Access to work. In his video White Cane, Amplified (2015) Papalia replaces his white cane (a mobility tool used by people who are blind or visually impaired) with a megaphone. Prior to using the megaphone in place of the white cane, Papalia experimented with a high school marching band to develop a set of sounds, instead of the white cane, to help guide him through Los Angeles. “Stumbling upon the term non-visual learner allowed me to recognize the value in my process of gathering a sense of place and was the catalyst for a body of work that realizes disability experience as a liberatory space.” White Cane, Amplified follows the artist’s walk along the busy streets of Vancouver, using sound and voice instead of touch to find his way, calling out passersby to help him cross the street. His earlier walks engaged willing participants who would join him from beginning to end. The video turns the project outward, hailing an unwitting public body that is forced to take a position and decide whether to ignore or engage with Papalia, and his vulnerability in the urban landscape.
Another model of care that speaks to the generosity of Papalia’s Open Access is Simone Leigh’s Free People’s Medical Clinic (2014). In its first iteration in Bed-Stuy, Brooklyn, Leigh revisited the often overlooked health care efforts organized by black women for the African American community during the 19th Century, as well as the Black Panthers’ community-based health care programs that operated from the 1960s to the 1980s. Leigh’s contribution to the exhibition is comprised of ephemera related to the Free People’s Medical Clinic, which points to a need for more dignified health care options within underserved communities. Leigh’s Waiting Room Magazine was made available at the clinic in the former home of Dr. Josephine English, the first African-American woman to establish an OB/ GYN practice in New York State. The publication opens with an essay titled Waiting Room by A. Naomi Jackson, who recounts the death of Esmin Elizabeth Green who died in 2008 at the age of 49 in the emergency room of Kings County Hospital, having waited 24 hours to see a doctor. Jackson refers to surveillance footage documenting Green’s death, stating “Waiting may have killed her.” Leigh’s project and Jackson’s essay make the case that it is time that women of color receive equal care.
The desire for equal care is a common goal among the artists in the exhibition, whether it is David Wojnarowicz’s refusal to be silenced, or Carmen Papalia’s proposition for a more flexible and nuanced approach to accessibility. Like many of the artworks, Papalia’s White Cane, Amplified externalizes his sense of vulnerability by addressing the public. As he explains, the experience of disability can be a liberatory space, rather than one of isolation. His is a sensitive yet assertive approach to making care a public priority. As major American cities undergo cycles of revitalization, civic planning often compartmentalizes health concerns out of sight and public awareness. The visionary thinking and tactics of these artists give voice to the experiences of isolation and lack of care surrounding the diversity of health conditions ranging from disease to disability, and acknowledge the manifold relationships needed to develop a more supportive model of care. The Hippocratic Oath requires practitioners of modern medicine to follow a code of care that incudes:
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
—Excerpt of modern translation by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University
Just as there is an art to medicine, there is an art to care, and to being an engaged member of society. It is within this space of understanding that we can begin to transform care on a variety of scales, from the personal to the political.