Envisioning Dependency: What it Means to Care
by Madison Whitaker
From Sunday, July 28 to Sunday, August 11, 2013, the exterior of Essex Street, an art gallery in New York City, was closed to visitors (fig. 1). A sun-faded red awning hung above the entrance, signaling not to the space behind the graffitied metal shutters, but instead to the text above: “HUAN JI FOOD COURT INC.” in white capital letters. The phone number of the advertised Chinese restaurant and the street address of the gallery remained on the fabric cover in a plain, white text, but the latter was obscured by a second superimposed address in black—“1918 1st Ave.” Affixed beneath the awning, heavy-duty chains and multi-colored pennants drew the eye to a shaded space where various articles of black and white clothing, in addition to some remnants of dry cleaner’s plastic, were hung to dry in front of the metal window covers.1
Staged by artist Park McArthur, the temporary installation, entitled During the Month of August Essex Street will be Closed, at first resists any clear categorization. Seemingly incongruous components of the work display visual signs of obsolescence, such as the repurposed signage for a then-nonexistent restaurant. Likewise, these components also signal to less obvious evidence of neglect and decay, such as the infinitely drying clothes, forgotten or abandoned by a hypothetical and unseen tenant of the space. Importantly, however, the exhibition does not initially look out of place; while residents of the neighborhood or frequent gallery visitors may notice the minor changes to the gallery’s exterior, including the painted-over address and wet clothes, the installation, both in its individual elements and culminating effect, is incredibly ordinary. The only thing that suggests it fits elsewhere is the second superimposed address on the awning, which belongs to Draper Hall, a former nurses’ dormitory next to Metropolitan Hospital in East Harlem that remained vacant after flooding from Hurricane Sandy in 2012 and began new development as senior housing in 2015. Prior to this, the dormitory building housed nursing students and, on occasion, elderly patients in need of affordable housing near the hospital facilities. These details of neglect in public view, things in need of continual maintenance alongside that which requires a complete overhaul to function, point to how During the Month of August participates in an ongoing discourse around institutional care, to which disability scholars and activists have called attention since the 1960s when the disability rights movement began to take shape and foregrounds the devastating consequences of the COVID-19 pandemic on these institutions and subsequent responses.2
By incorporating concrete examples of these systemic issues, McArthur emphasizes the connection to this discourse with the inclusion of a 112-page document accompanying the installation written by Clarence J. Sundram, Governor Andrew Cuomo’s Special Advisor on Vulnerable Persons, that visitors can access via the gallery’s website. Released in April 2012, the report, titled The Measure of a Society: Protection of Vulnerable Persons in Residential Facilities Against Abuse & Neglect, details the findings of a year-long investigation in response to the concerns of Governor Cuomo and others over failures to report and respond to instances of abuse and neglect in state-certified or funded residential facilities.3 Paired with the visual and contextual components of the installation, the report insinuates how little is known about what happens behind closed doors, especially because egregious acts of abuse or neglect only become newsworthy as “deviations from the norm.”4
Writing about McArthur’s work for Art in America in 2018, Ariel Goldberg describes Sundram’s text as “a conceptual framework for the suspended clothing, alluding to histories of buildings where practices of care have either been erased or distorted into dehumanization at the hands of the state.”5 Human traces have been all but erased from the installation, remaining only in the physical evidence of previous unseen actions. In bringing together the various elements of the exhibition—the installation site, the then-defunct building, and the government report—McArthur emphasizes the tension between private and public spaces and the fraught separation between the two.
Blurred spheres of private and public life have become more apparent amidst the COVID-19 pandemic, in which personal choices and behavior have the potential to impact society on a broad scale. The Center for Disease Control (CDC) and World Health Organization (WHO) have recommended safeguards against contracting the virus, most notably social distancing. These safety measures have impacted the ways in which everyone has learned to navigate the world, such as working from home and avoiding physical interaction with people from outside of one’s own household. Though intended as equitable, these kinds of protective measures favor those privileged enough to undertake such large changes to their daily lives at the expense of those living in high-density areas, multigenerational homes, and with public-facing jobs. The essential workers whose labor sustains society, including grocery store clerks, warehouse workers, and delivery drivers, not only continued their risky jobs, placing themselves at increased risk of infection, but also often faced more stressful working environments without adequate compensation.6 Additionally, the pandemic has exacerbated the strain on residential care facilities and the longstanding, systemic issues they already faced. Ironically, New York State’s policies regarding residential care facilities and nursing homes have faced some of the most scrutiny, prompted by the state’s requirements for retaking recovered COVID patients and severe underreporting of COVID-related deaths in nursing homes by several thousand cases.7
Moreover, these suggested safety measures, in addition to more general consequences of COVID like supply-chain and employment disruptions, place an extra burden on the lives of disabled people, especially those who require home healthcare or other personal assistance to complete daily tasks. Staffing shortages and emergency funding restrictions, including the failure of some states to designate home healthcare workers as essential, have resulted in fewer resources for agencies, and thus have reduced the availability of services.8 Conflict arises, then, when disabled people are made to choose between their own safety, by staying home without guaranteed access to basic services, and potential exposure by entering medical facilities or other public spaces.9 Together these factors bring into question the ways in which institutions of care have been historically structured and how they might be reimagined in a post-COVID world. How do we provide and access better care, especially in the wake of increased physical and social isolation? Disabled people, alongside LGBTQIA2S+ and BIPOC communities, were acutely aware of these problems long before the pandemic. Consequently, they have envisioned and organized alternative means of support to meet their own needs. One compelling approach to both accessing care and fostering community has emerged in the form of care collectives, or care webs.
Loree Erickson, a Queer-Crip theorist, writes about a vision of collective care on her blog, describing it as, “the work performed by informal collectives within and between marginalized communities committed to meeting the interdependent care needs of community members.”10 With disability justice as a central organizing principle, care collectives operate within a mutual aid framework to provide support for community members and fill in the gaps left by institutional shortcomings. Since 1999, Erickson has met her own daily care needs, including tasks such as getting out of bed and using the bathroom, through this model after facing a variety of issues surrounding inadequate funding and discrimination from home health aides. In sharing her experience within activist spaces, she has noted a pattern of people turning towards collective care after encountering similar barriers to accessing adequate and respectful care.11
Park McArthur cited her initial encounter with collective care at the 2010 US Social Forum in Detroit, Michigan, where the newly formed Creating Collective Access (CCA) collective group founded by “three disabled Asian femmes,” organized to meet the needs of fellow sick, disabled, queer, and POC.12 At this conference, CCA crowdsourced care through peer engagement with individual attendees helping to meet each other’s supportive care needs in an unfamiliar and inaccessible environment while fostering a sense of camaraderie. McArthur engages with the lived experiences of care in her art, working from her perspective as a disabled adult who requires a significant amount of physical support. She often does this through collaborative works, such as Carried and Held, an ongoing project with iterations as recent as 2021 (fig. 2). Taking the form of a vertical museum label, the work conforms to the visual standards of the institution in which it is displayed. Whether placed on the wall of an exhibition space or gallery, the work always looks like typical museum signage and contains the same general content. However, the specific formatting of the label depends on the specifications established by the displaying institution.
In the 2021 version cited above at the Wexner Center for the Arts in Columbus, Ohio, the artist’s name is at the top of the panel, followed by the artwork title on the line directly underneath. Below, the material, specific to this version of the work, is listed as ink on paper mounted on styrene board. The most significant element of the work, however, is the list of over 250 names following the courtesy line, which begins, “Courtesy of the artist and Margaret Herman, Alexandra McArthur, John McArthur…” and so on. This grouping sequentially records the individuals who have provided assistive care to the artist through the literal acts of carrying and holding, simplified descriptions of the physical support that McArthur requires. McArthur, furthermore, adds names to the work upon each new iteration of the label. Carried and Held not only documents the care that McArthur has received, but it also frames the people providing care as part of a collaborative and ongoing effort. Grouping friends and family alongside anonymous individuals, as in “2 people living across the apartment at UM,” McArthur’s work demonstrates the ways in which affection operates to facilitate care between both strangers and loved ones.13 In this way, care work extends beyond the scope of community organizing as an active project and instead implicates everyone who performs a task in the service of another person.
These concepts of care work and collective care are only beginning steps to solving the historical injustices of government-supported institutions which have failed to supply adequate services to vulnerable populations. In During the Month of August, McArthur calls attention to the often-overt systemic deficiencies that remain normalized and, thus, overlooked in daily life. However, the fundamental ideas of mutual aid and community-based support provide opportunities to consider how we might better assist one another in the aftermath of the COVID pandemic. This kind of supportive care is already happening on a small scale for many such as ‘pods’ of friends or family who gather in-person and help each other with basic needs such as grocery shopping or childcare. McArthur demonstrates the significance of both personal support and aid from the broader community in Carried and Held, emphasizing the impact of even small actions. Moreover, she calls attention to the failures of institutional care to protect vulnerable members of society, highlighting the normalization of neglect. In reframing intimate personal support and social reform alike as different means of collective care, McArthur helps us recognize how care work fosters social connection and social justice. By engaging with her work, we might be able to start thinking about how we can better support ourselves and one another.
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Madison Whitaker received a Master of Arts in art history from Southern Methodist University in Dallas, Texas in 2021. Madison’s research interests include care practices in contemporary art, especially through the lens of Crip theory, and concepts of queer kinship.
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Footnotes
1. Prior to the gallery’s move in 2017 from Eldridge Street to another space on Hester Street in Lower Manhattan, the flags and red awning were part of its everyday exterior. Photos of the gallery’s exterior from pre-2017 are difficult to locate, but these details are sometimes visible in interior installation views. The primary difference, then, between the exterior on a normal basis and during the span of this exhibition is the metal gate covering the windows during the day and the wet clothing hung outside.
2. Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice (Vancouver: Arsenal Pulp Press, 2018), 43.
3. Clarence J. Sundram, The Measure of a Society: Protection of Vulnerable Persons in Residential Facilities Against Abuse & Neglect: Report Submitted to Governor Andrew M. Cuomo (New York State Commission on Quality of Care and Advocacy for Persons with Disabilities, 2012), 11.
4. Sundram, 15.
5. Ariel Goldberg, “The Plasticity of Care,” ARTnews.com (blog), October 1, 2018, https://www.artnews.com/art-in-america/features/the-plasticity-of-care-63563/.
6. Some companies did offer “COVID Pay” to their employees as a means of compensating their labor during the peak of the pandemic, but it is difficult to assign a monetary value to risking one’s own life.
7. Michael Gold and Ed Shanahan, “What We Know About Cuomo’s Nursing Home Scandal,” New York Times, August 4, 2021, sec. New York, https://www.nytimes.com/article/andrew-cuomo-nursing-home-deaths.html.
8. Denise Tyler et al., “COVID-19 Intensifies Home Care Workforce Challenges,” Office of the Assistant Secretary for Planning and Evaluation, May 31, 2021, https://aspe.hhs.gov/reports/covid-19-intensifies-home-care-workforce-challenges.
9. Abigail Abrams, “For People With Disabilities, Coronavirus Is Making It Harder Than Ever to Receive Care,” Time, April 24, 2020, https://time.com/5826098/coronavirus-people-with-disabilities/.
10. Loree Erickson, “Welcome to Cultivating Collective Care Website!,” Cultivating Collective Care, June 8, 2020, https://www.cultivatingcollectivecare.com/post/welcome-to-cultivating-collective-care-website; Erickson credits indigenous activists such as Kim Tallbear for expanding on the idea of care practices, extending into community organization and activism.
11. Erickson, “Welcome to Cultivating Collective Care Website!”
12. Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice (Arsenal Pulp Press, 2018), 21; Park McArthur, “What Is Collectivity, Conviviality, and Care?,” in Question the Wall Itself, ed. Fionn Meade and Jordan Carter (Minneapolis: Walker Art Center, 2017), 248.
13. Eva Feder Kittay, “The Ethics of Care, Dependence, and Disability,” Ratio Juris 24, no. 1 (March 2011): 53. In this instance, affection does not necessarily mean a platonic or romantic concern for one another but could describe feelings of empathy and moral obligation.