featured gallery for April 2020

An Army of The Sick Can’t Be Defeated: Reflections on Care Work in Perpetual Sick Times

It feels so urgent to want to connect with you, with history, with each other, and ourselves. We are chronically ill and disabled brothers who have grown up with sickness as the norm, with a father who is sick and disabled, whose brother died of AIDS related causes in 1993. This post is an opportunity to reconnect with each other with care in this intense moment of communal anguish and confusion due to COVID-19. The invitation to curate this web gallery will take that form, a space for reaching out and a call to care for one another, to radically give and take care. We lean into familial and communal histories and the now of illness in this very moment during a pandemic that is gripping hold of society. Many are only now experiencing the ongoing ramifications of ableism, medical racism, the lack of structural care, giving visceral and inescapable realizations that our systems are failing us all. For a society not built with equitable care as a politic, value, and practice we are now in a critical revolutionary moment. Disabled artist Johanna Hedva writes in their essay Sick Woman Theory:

“Sickness as we speak of it today is a capitalist construct, as is its perceived binary opposite, 'wellness.' The 'well' person is the person well enough to go to work. The 'sick' person is the one who can’t. What is so destructive about conceiving of wellness as the default, as the standard mode of existence, is that it invents illness as temporary. When being sick is an abhorrence to the norm, it allows us to conceive of care and support in the same way.

Care, in this configuration, is only required sometimes. When sickness is temporary, care is not normal."

Hedva’s offerings here reflect an awareness that our care systems are broken and built for only the few who can afford quality care—something that many people are suddenly realizing. It is a glaringly obvious point in time for all of us to choose to shift our belief that illness is temporary to an understanding of illness and care as collective constants.

Care of oneself, the personal and private, is entrenched with communal care. Looking through the Artist+ Registry, we were struck by Joe Monroe’s painting Nightly Ritual and Gin Louie’s Untitled Physician’s Desk #1; both convey experiences of ongoing care and medical treatment imbued with interpersonal resonance. Navigating ongoing rituals of care is often difficult, but integral to being able to sustain one’s own capacity in a society that emphasizes individual over communal care. This led us to a sobering moment when learning about Frank Green’s socially engaged installation Anonymous Testing Site, where he created a mock testing site, illustrating the depth of personal trauma and the faults inherent in losing agency to a biased medical system that can perpetuate stigma.

This echos once more what is happening now, where we see medical professionals having to navigate the responsibility of supporting those whose care needs are ongoing just the same as those more “healthy,” whose treatment might cost less during this pandemic. In response to current discourse around scarcity of resources, many disabled, sick, Fat, and BIPOC people are in fear of not accessing treatment during a current overloaded and historically discriminatory medical system. Recent hashtags like #NoBodyIsDisposable are moving around Twitter and Instagram, crucially connecting the protests and fights for abolition of immigrant detention camps. Caring for all lives that are deemed “disposable” is the work we need to continue doing.

“Everybody who uses the progressive moments of illness acts revolutionary”-SocialistPatientsCollective

We need to continuously be centering and learning from sick and disabled communities, especially from people who are marginalized by ongoing systemic racism and gender discrimination, from those of us who live intimately with illness and who navigate restrictions of care due to systemic shortcomings. Disabled and sick people are consistently deemed more “disposable” in the austerity driven world. The bio-medical and insurance industry complexes that are (and always were) under-prepared for us all to be SICK and needing care, have only been accounting for some of us to be sick in order to perpetuate their cure-focused approach to gaining wealth. It’s becoming more apparent than ever that in order to survive, we need to change those systems. We need each other—we always have, and always will.

Sickness has for so long been entangled with ableist and racist systems that push for individualized and separate experiences and understandings of illness, rather than efforts to build a sustainable, interdependent experience of collective care for all. Now, the COVID-19 pandemic is forcing our country to reckon once again with the steep and massive failures in our care systems, just as people reckoned with the same on a large scale in the early periods of the AIDS pandemic. There is no time more prudent than now to learn from resources of collective care enacted by disabled and sick people, building mutual aid as political acts of survival under capitalism. Disabled poet and essayist Leah Lakshmi Piepzna-Samarasinha writes in their book Care Work: Dreaming Disability Justice, that collective access and care is always rooted in “solidarity not charity—of showing up for each other in mutual aid and respect. She calls for a collective re-imagining of care work to be a site for “pleasure, joy, and community building,” rather than scarcity and chaos, which we find ourselves facing in the current national narrative of austerity driven care.

Illness finds us all, but care unfortunately does not.

We need to listen to sick and disabled people. We cannot discount the lives of us who are deemed high risk and "disposable". This stirs greater fears of precarity and burden feelings that have long been the overarching precedent for society’s response to epidemics, for scapegoating sick and disabled people, queer people, Black and Indigenous, and POC, for Jews and Muslims, and anyone who is deemed “other”. Unfortunately we see this happening now with shortages in medication for chronically ill and disabled people, like those with Lupus, who are already having to experience the ramifications of a panicked and unprepared society forced to deal with illness as ongoing, just as AIDS is not over.

Inheriting this call to surviving in this broken world and supporting each other in the process, our collaborative work An Army Of The Sick Can’t Be Defeated was created. Born from, and inspired by, strong and deep legacies of those Sick, Queer, Mad, from Jewish communal and familial inherited trauma; from Black, Indigenous, and communities of color’s protest legacies and histories of ongoing survival, to the legacy of AIDS activists and artists, disability activists and artists, and by all those who have taken on the the historically feminized (therefore deemed less than worthy) radical acts of nurturing and caring. An Army of The Sick Can’t Be Defeated is a call to arms to enact care and prioritize mutual aid.

It is a reference to similar ethos from those who were entangled in creating and fighting for societal change during the 1980s and 90s. Gregg Bordowitz’s lecture-performance Gimme Danger at Triple Canopy, a conversation on the ongoing aspects of surviving with illness, made clear that certain histories of resistance are overwritten but that we need to come together and expand the legacies of activism. Similarly this harkens to a reader published in 1990 through ACT UP, with the heading “Army of Lovers Cannot Lose,” an ethos of a persistence of love and care through ongoing experiences of illness.

To be scared of the sick is to be scared of [the] living.

In a time when refraining from touch and exposure to each other is truly a way of caring, we hope to make clear that physically distanced acts of care for others is a form of disability justice. Chloe Dzubilo’s Untitled (No Glove No Love) understands that harm reduction practices are necessary expressions of care and love, such as engaging in safer sex practices, to actually wearing protective gloves and masks to curb the spread during the current quarantine moment. Much like the sentiment in Shan Kelley’s work (You Can Still Love Me From There), we are all experiencing a shift in relationships and expressions of care by being physically distanced, though it’s not as new to those of us whose beds are lovers, nests for rest, who rely on staying home due to illness and/or the rampant inaccessibility of social spaces that can accommodate and be safe for sick and disabled people to gather. Accounting for the social and emotional welfare of each other during profound moments of physical distancing is integral. Those of us connected to the internet are blessed to live with privileges that come with the possibilities for sharing mutual aid practices and initiatives emerging through accessible online platforms. Vasilios Papapitsios’ Viral themes speak to the connectivity and promulgation of global internet communities' responses to illness.

For many who usually participate in cultural production and consumption, who are in a privileged class of those able to work from home, have now been experiencing an explosion of remote programming, work, and entertainment during this time of physical distancing while at the same time many working class, many poor, undocumented immigrants, and medical workers people are “fighting” on the front lines of the pandemic to ensure care for others. The way our cultural practices of labor, participation, and dissemination shows the potential for a world that considers being remote and connected as part of accessible practices extending to all. Disabled people have long been asking for this type of remote access and we continually hope this will continue once the dust has settled. There are many more moments of learning and growth to come, and a hope for a shift towards accessibility and care as a constant.

Osvaldo Barrocal’s Untitled/Pods or Cells further illustrate our entanglements, using abstraction as a form of collective reimagining of our interconnectedness to survive. We know that many disabled and sick people have been organizing and building communities through the internet for a long time, and it’s important to now more than ever to recognize the fact that there are ongoing efforts to fundraise, connect, offer care and support modeled on tactics of mutual aid between sick and disabled people. Similar to the call of the Visual AIDS 1993 broadside, “Care for People with AIDS,” now too is the time to care for ALL, for all people who are SICK—through political engagement, fighting for prison abolition, for housing justice, and for Disability Justice. CRIP FUND is an fundraiser for mutual aid, organized by disabled artists committed to helping fellow disabled people in this moment of profound precarity (that many already experience daily) and we encourage you, the reader, to donate if you can, and/or share this around.

Networks of care CAN and SHOULD also become contagious.

Relationships of care are often invisibilized, conceived of as private, but many artists are using these moments as material, giving more understanding to the intimacy of living with illness. This is found in Carl George’s DHPG Mon Amour, a 1989 film depicting a raw and intimate moment between ill partners injecting medicine in one another. The pair were not only experimenting with dosages and medications for their own survival, but were creating a care guide to share. Documenting the actual act of care is as radical as broadening the network of care. Pepe Espaliu’s Carrying performances encouraged the participation of the artist’s friends and family in a moment when the stigma of AIDS was forming. Through the organizing of many, the physical act of carrying became a symbol for the ways we can come together in carrying the joy and responsibility to care for others.

Immunocompromised Artist Members living with HIV and AIDS and those who have passed due to AIDS-related complications have taken to fighting stigma by externalizing their private moments. They lean on family and chosen family to play important roles in care work and ongoing memory of support and love, reminding us of the power of closeness to others like (chosen) family be it through touch or memory. Kia LaBeija uses her camera to instill a framing of glamour and beauty in her pose and outfits, along with sites and objects imbued with personal history. Chloe Dzubilo’s tribute to all fathers and mothers echoes in words what LaBeija captures in her photographs. Eric Rhein’s photo of caring for and with his partner likewise makes apparent the commitment to the deeply private moments as equally necessary to show as large scale activism. Further commenting on our choices to include LaBeija’s photos, Phillip Sampruru stone sculptures of family ties, and Lina Yaroslavska’s Support Among Equals photo series, Tracy Fenix offered their analysis that the grouping of these works act as “documentations of playful, joyous everyday interactions among close relations. I think these gestures are reminders of care in relation to physical proximity and communal experiences.” The support seen here is truly found in the ongoing work of Visual AIDS, and we are so thankful to be included in their work.

To close on the sentiment of interdependency, Gustavo Diaz’s work and Barton Lidice Benes’ Brenda reminds us that the reprieve of memory keeps the embers of community action and spirits alive and burning, that hard times leave us with grief, but can also remind us of our values. AIDS is not over, sickness will never be over, care will always be needed. Moving towards justice means learning how to care from the past and present going forward.

We encourage you to reflect on your role in caring, to reach out to others, to the ones you love and those you don’t know, ask what you can do, offer to help, and be soft, tender, generous, slow, urgent, and radical enough to give and take care.