Kingdom of the Ill (eBook)

Sara Cluggish and Pavel S. Pyś

Kingdom of the Ill:

Emergent Discourses on Access in the Arts

The last few years since the beginning of the covid-19 pandemic have brought all matters of health and illness into sharp relief. The novel coronavirus outbreak has not only informed debates on the national, financial, political, and ideological dimensions of healthcare provision, but shaped our very personal experiences of how we receive and provide care, guard personal space through social distancing, and make decisions on whether or not to participate in sharing physical space with others. For those who identify as ill or disabled, this physical isolation and hyperawareness of one’s body is typically the norm, not the exception. Reflecting on this shift in public consciousness, writer and artist Johanna Hedva facetiously remarked: “It’s funny to me that in 2020, we’re all behaving as if illness is this completely foreign, brand new experience (…) we instead kind of push it out into this, this exile, this banishment (…) and I just think all of that is bullshit. Everyone gets sick. This is just a part of being alive”. [1] Sickness is not a singular state of being or moment in time but a continuum. The title of our exhibition—Kingdom of the Ill—invokes American writer and political activist Susan Sontag’s work of critical theory Illness as Metaphor (1978), specifically Sontag’s suggestion that we each hold dual citizenship: one to the kingdom of the well, and another to the kingdom of the sick, and that we must at one point or another identify with either. The idea that any one of us can ever truly reach the idealized “healthy” state of productivity that capitalism promotes is a fallacy. In striking out the binary separating these two “kingdoms,” we resist Sontag’s demarcation, instead drawing attention to the ways that wellness has become an impossible goal under advanced capitalism. [2] In the words of economists Raj Patel and Jason W. Moore: “To ask for capitalism to pay for care is to call for an end to capitalism.” [3]

Kingdom of the Ill was spurred by the observation that over the past decade, artists have increasingly embraced their own diagnoses, bringing their lived experience into public view and demanding we openly and transparently give over space for discourse surrounding health and illness. Following their lead, many arts organizations have gradually shifted toward embracing programming on themes of sickness and wellness [4], exploring how we define normative understandings of what constitutes a “healthy” body. Exhibitions and public programs have asked questions such as: What are our roles as consumers of both traditional pharmaceuticals and natural therapies? How might environmental devastation and pollution affect our health? What advances in technology and speculative fiction have shifted the landscape of illness and wellness?

In her 2018 performative lecture The Art of Dying or (Palliative Art Making in the Age of Anxiety), filmmaker Barbara Hammer spoke to this change against the backdrop of her own experience of living with advanced cancer: “all of us—artists, curators, administrators, art lovers alike—are avoiding one of the most potent subjects we can address. I’m happy to see there is a recent change in a few organizations that are planning seminars on health, illness, death, and dying right now, and artists are coming out with transparency finally as they break the fear of coming out as ill.” [5] While the topic has gained visibility, it has simultaneously become painfully evident that arts organizations lack the infrastructure or financial means to support the working modes of artists who identify as chronically ill or crip [6], much as they may want to embrace the artwork they make. The onus has often fallen to artists themselves, and as a consequence, many have been sharing their personal access riders online. [7] These customizable documents outline one’s disability needs with the aim of creating “access intimacy”: a term defined by justice activist Mia Mingus as “… that elusive, hard-to-describe feeling when someone else ‘gets’ your access needs.” [8] Provided at the beginning of a working relationship, access riders can help artists to define and protect parameters of fair pay, project timelines, personal care assistants, childcare, food and dietary restrictions, travel and lodging requirements, mobility needs, and the accessibility of the venue or event taking place. Importantly, they also allow artists to define how and to whom their disability or illness is disclosed and protect artists from having to taxingly communicate and re-communicate their access needs. Through this practice, the onus shifts from artist to institution, whereby the museum is challenged to reflect on entrenched working practices and adapt to new procedures. As is often the case, artists take it upon themselves to advance this work before institutions: in 2019, artist and writer Carolyn Lazard published Accessibility in the Arts: A Promise and a Practice. This freely available toolkit sets out pathways for small-scale arts nonprofits to facilitate and support relationships with artists, addressing barriers and opportunities. Within this guide, Lazard succinctly gets to the crux of the issue in addressing the artist-driven rapidly advancing discourse and the slow pace of institutions: “There is often a striking discord between an institution’s desire to represent marginalized communities and a total disinvestment from the actual survival of those communities.” [9]

Park McArthur’s Carried & Held (2012) is a deceivingly simple artwork: a list that in format approximates a museum label, identifying every person who has lifted McArthur, who uses a wheelchair as she suffers from a degenerative neuromuscular disease. Friendship, community, networks of care, mutual aid: these collective efforts are at the very heart of what has energized the shift in discourse around illness, ableism, and inclusivity. The exhibitions, public programs, publications, and workshops of artist collectives—including Canaries, Feminist Healthcare Research Group, Pirate Care, Power Makes Us Sick, and Sickness Affinity Group, among others—have elevated concerns with denial of access relative to illness and disability, demonstrating how these are negotiated at the intersection of not only ability but also race, gender, sexuality, and class. Galvanized by historical precedents—especially groups such as ACT UP, the Art Workers’ Coalition, and more recently, w.a.g.e. and Decolonize This Space—the work of many of the artists and collectives cited here dovetails with activism, with a real call for increased transparency, equity, support infrastructures, as well as systemic change, both within and beyond the artworld. Through flexible membership models that can function as part support group, part activist networks, and (in some cases) part art collective, many groups have centered their focus on public-facing protests and boycotts, as well as mutual aid fundraising. Since 2017, artist Shannon Finnegan has produced two versions of their interactive installation Anti-Stairs Club Lounge that responds to the inaccessibility of architectural sites: the Wassaic Project Space in Maxon Mills (2017–18) and the Thomas Heatherwick designed “Vessel” in New York. In the case of the latter, together with a range of disabled and non-disabled participants, Finnegan protested the structure, calling for a permanent “Anti-Stairs Club Lounge” with a budget of $150 million (equivalent to the entire structure budget). These sites hold inherently ableist assumptions, just as modes of engaging with exhibitions and accessing museum spaces do, and artists such as Finnegan are thus crucial voices in demonstrating how these spaces must change for equitable access. In 2020, several disabled, chronically ill, and immunocompromised people rallied together to create the CRIP Fund, with the specific aim of redistributing donated funds to those same communities affected by the covid-19 pandemic. Mutual aid endeavors such as the CRIP Fund (as well as the work of the collective Sick in Quarters) make painfully evident the need for artists to turn to collective action in the face of the inadequacy of state-run healthcare systems and the boogeyman known as the medical industrial complex. In The Hologram (2020), which sets forth a vision for revolutionary care centered on viral, peer-to-peer feminist health networks, artist Cassie Thornton laments this very sense of entrapment: “We don’t see this as a choice because it seems impossible to sacrifice our access to our means of survival under financialized capitalism by reaching for an uncharted experience of collectivity, care, and mutual aid, abandoning the idea that we can become successful capitalist subjects.” [10]

These efforts advance parallel to large social movements—racial reckoning, rallying around student debt, the #MeToo movement, climate advocacy, ongoing calls for corporate accountability—that seek an undoing of continuing injustices and violence, many of which are seeded by the logic of capitalism that perpetuates profit-hungry greed, division, and indebtitude. With so many of these activities run at a grassroots level, a valid question surfaces: when will we...