A field guide about accessibility in arts and culture that shares knowledge generated through “Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying,” and work that has since emerged from its network of artists, organizers, and community partners in Waawiiyaatanong/Detroit.
The book will offer tools, essays, and case studies on the depth and complexity of doing access with multiple different sets of lived experiences at the center. This “access-centered” approach understands access as political-relational and ongoing and shares perspectives on access as a specific process that is not a part of inclusion, but more in dialogue with abolitionist and decolonial practices.
Editorial note: in what follows, we work from an expansive definition of disability that includes those who are physically disabled, cognitively disabled, chronically ill, Sick, Mad, D/deaf and hard of hearing, Blind, DeafBlind, neurodiverse, have mental health disabilities, are immunocompromised, or otherwise have their own lived experience with cross-disability experiences, whether or not they have access to medical definitions of disability, or are comfortable with the word “disability” or publicly laying claim to that identity. The term “crip” is a political reclaiming by some disability activists of the derogatory label “cripple.”
Background to the project
(“Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying” (referred to subsequently as “the project”) was a peripatetic series of exhibitions, public programs, and community projects curated by Taraneh Fazeli between 2016–2020 addressing the politics of health, disability, race, and care.
The curatorial proposition for this internationally-referenced arts project valued interdependencies and dependencies – models rooted in care, disability, and Black and postcolonial transnational feminisms – as the basis of ethical relations. It countered the over-valorization of independence in US society and examined how globalized racial capitalism has produced debility in many populations while creating bureaucratic infrastructures that support very few. It was part of a wave of exhibitions which brought discourses on health, disability, and accessibility into the mainstream of Western contemporary art, and notably brought a racial analysis which wasn’t foregrounded in many other projects on disability in mainstream arts at the time. The curatorial methodology of the project was rooted in the trajectory from rights to justice frameworks in the US, and employed the attendant representational strategies of opacity and occlusion over visibility: beyond the main exhibitions, which provided general access points, many in depth activities were intentionally developed to occur outside of the public eye.
The project proposed that better incorporation of the states and temporalities of debility, disability, healing, and rest into society could be resistive to forms of ableism and dominant temporal regimes by offering possibilities for rethinking collectivity. In different ways, the methods and outcomes of many of the artists in the project centered ethics of care rooted in disability justice, racial justice, and anti-assimilationist queer movements. Going beyond thematics, the artists rethought received practices and definitions by using the material of care and lived experiences with debility and disability as creative material: crip time, access, inter/dependency. They used creative spaces to express love for disabled lives, resist ableism’s intersection with racism, colonialism, and heteronormativity, and build collective wellbeing and health autonomy. Individual artworks addressed infrastructure, care, ancestral healing, illness, fitness, sleep, somatic sustainability, debt, dependency, crip or decolonial temporalities, and wellness culture.
Between 2016–2020, arts organizations across the United States hosted iterations of the project. These were: Red Bull Arts Detroit (Waawiiyaatanong/Detroit, Michigan), Bemis Center for the Contemporary Arts (land of UmonHon [Omaha], Ponca, Pawnee, Otoe, Missouri, and the Ioway peoples/Omaha, NE), The Luminary (land of the Osage Nation, Missouria, and Illini Confederacy/St. Louis, Missouri), Elizabeth Foundation for the Arts Project Space (Lenapehoking/New York City), Lawndale Art Center and Project Row Houses (land of the Atakapa-Ishak, Tāp Pīlam Coahuiltecan, and Karankawa nations, and the Sana band of the Tonkawa people/Houston, Texas).
Artists involved were Navild Acosta and Fannie Sosa, Ava Ansari + Poetic Artists involved were Navild Acosta and Fannie Sosa, Ava Ansari + Poetic Societies, Fia Backström, Berlin Feminist Healthcare Research Group, Canaries, Jesse Cohen, Danilo Correale, Wayne Curtis, Carolyn Lazard, Jen Liu, Jordan Lord, zavé martohardjono, Park McArthur, Sondra Perry, Carrie Marie Schneider, Owólabi Aboyade (Will See), Katz Tepper, Cassie Thornton, and Constantina Zavitsanos.
At the project’s core was the pairing of disabled, Sick, immigrant, queer, trans, Black, and artists of color with community groups and social service organizations who were creating or sustaining alternative infrastructures of care in each of those cities. These included: people with chronic illnesses via Canaries support group, groups of young single mothers at Project Row Houses, women recently involved in the carceral system at Angela House, refugees and asylum seekers via Lutheran Family Services, activists experiencing burn-out through 4A Project, and local disability communities via Detroit Disability Power. The resulting programs and community projects reflected on relief and maintenance, and the potential for healing, repair, and resistance.
The project worked with a broad conception of art that extended beyond an institutionally-validated art world to relational and community-based forms of culture and creativity towards social justice. In later stages this included spiritual and ancestral rituals, community organizing, poetry, and hip hop.
A key part of the project’s methodology has been to advance structural change by offering accessibility, anti-oppression, and decolonizing practices to host organizations and facilitating ongoing durable relationships between communities most affected by the issues addressed, artists, and organizations (community, art, social service, medical) within each local landscape. For example, in Waawiiyaatanong/Detroit, this resulted in an accessibility audit of the host Red Bull Arts Detroit, and the establishment of a resource library of assistive technologies and grants for local smaller organizations and independent culture organizers to use. It also involved partnerships with organizations like Detroit Disability Power, a cross-disability power-building movement organization, and RIP Medical Debt, a nonprofit seeking to buy up medical debt so as to absolve it.
However, the project also necessarily addressed the tensions of seeking support and waging critique in organizations whose operating practices and structures work against their values or mission by upholding the white supremacist, ableist, and middle-class values that are the norm under racial capitalism.
Taraneh’s own chronic illnesses, which are inextricable from the effects of US imperialism and other racialized and Islamophobic oppressions her family experienced, and her previous work in institutional critique were the impetus to explore illness as a by-product of societal structures while also using curation and cultural production as a potential place to re-imagine care. Taraneh practiced complex care ethics in the way she curated and commissioned the exhibitions and projects. For example, access needs of artists and communities were foregrounded, commissioning timelines were longer than normal, artworks and projects were able to be developed in meaningful community dialogues in separatist or private spaces rather than the gallery, fee structures were transparent, and structural change was advanced at host organizations.
The “turn” to access in US arts programming, of which this project was a part, has subsequently been influential in Europe, which is reflected in work Taraneh has done with Tranzit/Display (Prague, CZ), ICI (Berlin, DE), Rupert, (Vilnius, LT), Casco Art Office, (Utrecht, NL) and Serpentine Galleries, (London, UK), as well as the recent rise of publications on the subject, like the Health anthology (Whitechapel, 2020), or large exhibitions, like “Crip Time” at Museum für Moderne Kunst (MMK) (Frankfurt, DE). Of note is that, while many of these projects address disability and care thematically, they don’t do so within their curatorial, editorial, or institutional structures. Furthermore, most are not organized by those with parallel life experiences to the artists or communities represented, nor are they committed to co-creating scholarship or discourse with the communities they engage over time as “Sick Time, Sleepy Time, Crip Time” has been.
Development of the project into a book
Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying – a field guide (referred to subsequently as “the book”) will address the complexity of making accessible worlds through a book. The book gathers the praxis-based knowledge generated through the project and its network into a collection that honors this complex weave of practices and people. It focuses on creating access where one is with the resources and needs there, while also sharing tactics to demand institutions transform and redistribute resources. Importantly, the book strategically shares aspects of the project that occurred outside of the public eye – either because they respected the needs of participants for opacity or closed groups in community settings, or because they addressed structural change at hosting organizations – in ways that uphold the original representational strategy of opacity. The book will historically contextualize this strategy in relation to needs for separatism and partiality, while examining its merits.
What will be unique about this book’s approach to access?
The project the book emerges from considered disability, race, and access together in ways prescient to the conversations that emerged out of the synchronous COVID-19 pandemic and uprisings against anti-Black racism in the US and beyond. The book foregrounds ableism’s intersections with racism and colonialism and comes at a key moment in global thinking on health and its relation to racism and climate breakdown, amidst a reckoning with institutions of all kinds on their roots in carceral, colonial, racist, and patriarchal systems. It is highly interdisciplinary and intersectional, and draws on US healing and disability justice frameworks, Black and Indigenous movements for reparations, and queer kinship and immigrant community care practices.
It places the recent interest in access in mainstream arts programing in dialogue with a longer history of disability arts, and models of access in community, from much cited Bay Area disability justice models to practices tied to culture and aesthetics in majority-Black cities like Waawiiyaatanong/Detroit that are not commonly showcased in coastal art or organizing spaces.
The book historically positions and addresses the limits of ideas of open access and universal design solutions often employed by organizations and institutions that focuses on legal compliance, check boxes, and “accommodations.” In the US, access has recently been folded into Diversity Equality and Inclusion (DEI) as DEIA. However, there are clear limits and problems with models of access, diversity, and inclusion that work from a reformist principle that assumes equality is possible within existing structures, rather than from decolonial, abolitionist, and anti-racist lenses, which depart from an understanding that inequality is built into existing socio-economic-political structures.
Instead, the book offers practices rooted in the depth and complexity of practicing access with multiple different sets of lived experiences at the center. This “access-centered” approach, which understands access as a political-relational process and ongoing, often shows up in smaller organizations or communities.
This focus on access centered approaches addresses the fact that tactics to demand institutions transform and redistribute resources often rely on people identifying themselves in relation to institutions, using specific categories and language. The book recognizes that many people with access needs do not identify as disabled or Sick. It also foregrounds practices rooted in partiality, mutability, and identity-based separatism and emphasizes the importance of non-universal processes based on local needs and resources in building collective wellbeing.
The access practices shared in the book do not all engage with the dominant Western accessibility discourses – often predominantly white-led, rights based, or institutionally oriented – that have recently risen to attention in English-speaking visual arts contexts. A key reference that connects the local focus of the project to transnational concerns is queer/post-colonial theorist Jasbir Puar’s articulation of how certain racialized populations are pre-ordained for injury and targeted maiming, while disability identity is simultaneously seen as a site of creative embodiment and resistance in the Global North.
Who is the book for?
This book will be of use to disabled artists and arts practitioners, but also to artists, curators, art workers, or anyone invested in navigating the affinities and tensions between struggles for disability justice and healing racialized trauma. For example, it will be useful for arts workers who want to learn about accessibility, artists who have to advocate for their own access needs and those of their communities when working with institutions, or organizers who want to evolve their practices of care to encompass an expanded disability lens.
Who is the editorial team and why are we collaborating?
Taraneh and artist and editor Cannach MacBride met in 2017 while in residence at the Jan van Eyck Academie (Maastricht, NL). We decided to work together as the main co-editors of this book due to our shared research interests, our ease in working together when Cannach provided feedback on some of Taraneh’s earlier writing that will published in this book, and the unique perspectives we each bring to the topics of inquiry due to our differing subjectivities, backgrounds, and lived experiences of disability, illness, and care. Key differences in our racial and gender identities, geographies, relationship to the originating exhibition, and primary role in the arts enables a polyvocality to our shared writing, commissioning, and editing. While Taraneh organized the show and is an Iranian-American curator, Cannach is a white UK/NL based Scottish artist and editor who did not participate in the exhibition and lives with several chronic illnesses. Cannach brings perspectives of European contexts and those who will have no knowledge of the originating artworks, ensuring the project resonates more widely.
Additionally, with the final “Sick Time, Sleepy Time, Crip Time” exhibition in Waawiiyaatanong/Detroit, community programs that were in development were canceled during the upheaval of the COVID-19 pandemic. Taraneh’s experience with the people she met while developing the community partnerships for these programs led her to settle in Waawiiyaatanong/Detroit where she continues to build roots. This decisive change was seated in her frustration with the limits of working on the project through curatorial residencies where timelines of one year or less limit the depth of engagement. She has since channeled the creative energy and commitments of the programs into the disability and healing justice creative collective Relentless Bodies that she co-founded with Owólabi Aboyade, a New Afrikan writer, Orisha priest, and cultural organizer, and Aiko Fukuchi, a queer Japanese-American writer and community organizer.
Relentless Bodies are co-editing a series of materials for the book because their collective practice – grounded in their differently racialized disability identities and long-term commitments to community organizing in Waawiiyaatanong/Detroit – brings importantly situated knowledge and practices to the book. Waawiiyaatanong/Detroit is the nation’s largest majority Black city, with a strong Latinx and Indigenous presence, while neighboring Dearborn is home to the largest population of Arab-Americans. Relentless Bodies works with the understanding that disability rights, pride, and accessibility frameworks have made marked improvements for some disabled people but have also historically centered whiteness and had trouble addressing less evident disabilities. As such, they bring the city’s context of violent gentrification, generational pollution, and traumas of underfunding to resist the production of disability and trauma, while simultaneously expressing love for their disabled bodyminds and lives. Relentless Bodies operates from the belief that the ethnic and racial oppression experienced by the families and ancestors of the collective’s members caused and furthered their chronic illnesses, and that culture has the power to help heal our personal and collectively-engaged bodyminds.
Relentless Bodies first and foremost cultivate care between themselves as a collective as a necessary part of engaging with wider publics, honoring the knowledge they have gained as chronically ill and disabled creators. This collective care is integrated into a deep process of ongoing shared study and creative work centering care, disability, and their intersections with various forms of imperialism, oppression, and generational healing.
Relentless Bodies are collectively developing, writing, and editing a series of case studies, essays, and tools. These are developed out of conversations within longstanding movement relationships, workshops, and events with other culture bearers, organizers, and community members. Some of its contents will be co-created through a community program for BIPOC disabled Detroiters taking place in late 2022/early 2023. This program will build local disability justice knowledge, community, and infrastructure in a city where there’s not a huge amount of training in disability justice and access, and what there is tends to shoehorn local issues into national and Bay Area disability justice aesthetics and language. The texts developed out of this program will share unique perspectives from Waawiiyaatanong/Detroit, connect readers to the work of a lot of incredible organizations and people working in the city, and connect to the city’s deep and plural histories of organizing.
Editorial methods further Taraneh’s approach to curatorial practice as care ethics, Cannach’s approach to editing as a practice of listening and care towards knowledge commons, and Relentless Bodies’ commitment to polyvocal co-creation seated in community. Methods include: polyvocality of multiple contributors; radical honesty in sharing the practical details, joys, and difficulties of applying tools in practices of care and resisting established economies of care; working on a crip decolonial editorial timeline; and customizing editorial processes based on contributors’ access needs.
Who will contribute?
Contributors are rooted across diasporic, immigrant, disability, Black, Indigenous, people of color, trans, and queer creative communities. They are artists, curators, cultural organizers, disability community members, care workers, healing practitioners, and disability and healing justice organizers.
What form will the book take?
The book will center accessibility in the design process. It is designed to be read in a non-linear form with readers able to read content most relevant to them in whatever order they choose. The design layout will support easy visual and tactile navigation of the different forms of content. A free to download, accessible PDF version of the book will be made available online at a date to be agreed with the publisher.
We would like to make the content available on a website with accessible design but this is dependent on obtaining further funding.
What will be in the book?
- An introduction including contextualizing essays by the editors, a glossary, and a score by artist zavé martohardjono to invite somatic grounding in readers.
- Documentation archiving the exhibitions, events, and community projects of the original project in a manner that honors the interconnections amidst its ongoing network. This includes: a revisit of Taraneh’s original curatorial essay; twenty short essays on artists in the project and their artworks by Taraneh; images and image descriptions by Alt Text as Poetry; and an annotated bibliography by all participants.
- A set of creative and practical care tools is framed by a set of case studies and essays. These resources emerge from across the project, with a focus on the work that emerged from the engagements in Lenapehoking/New York and Waawiiyaatanong/Detroit, the latter via materials edited by disability and healing justice creative collective Relentless Bodies.
Case studies and essays by Taraneh and artists from the project analyze disability and access through the lens of creative, curatorial, care, and access work with institutions and in community settings; lived experience of chronic illness; and analysis of artists using access as creative material. Case studies and essays by Relentless Bodies address the intersections of ableism with colonialism, structural racism, and environmental injustice and include pieces on: Blackness and disability; the intersections of environmental justice and disability justice; meditations on forms of non-Indigenous solidarity for Indigenous Land Back struggles; care mapping, a practice for mapping and strengthening care in community; facilitation of care circles for caregivers and receivers; grief in the context of chronic illness rooted in multi-generational racialized trauma; and the use of Community Benefits Agreements to resist artwashing that occurs in development and parachute-in art projects. (See below for a few examples.)
Tools were created by artists, cultural organizers, and community members to advocate for the needs of themselves and others. These are co-created with the creative and organizing communities that their writers work with through the lens of mediating ableism and racism. These include access riders, community benefits agreements, decolonial riders, and more, and are accompanied by descriptive vignettes of different types of accessibility practice. (See below for a few examples.)
Four examples of case studies and essays:
1. A reprint of Taraneh’s original curatorial essay “‘Notes for Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying,’ in conversation with the Canaries,” which narrates the project’s concerns and the collaboration with the Canaries collective that kicked the project off. Accompanying it will be a contextualizing introduction of how and where the essay has since circulated, its relationship to other texts at the time, and the impact it has had. Two postscripts narrate what happened following the essay’s publication. The first addresses a critique of the essay that was published online by a regional arts publication in Texas. The critique was written by a white, straight cis male artist with a heart condition, and devalued feminist, queer, and healing justice approaches that value interdependency and disabled wisdom by insisting on the supremacy of rationalism, independence, and a medicalized model of disability. There was a robust response in the comments from a wider community in support who expressed in multiple ways that interdependency always already exists, whether it is acknowledged or not. The second addresses the support group and art collective Canaries, who following publication of the essay, finished producing a newspaper sharing tools grounded in their specific community of support for others to use. The postscript addresses the creative and support practices of the collective, including its difficulties, that seeded the rest of the “Sick Time, Sleepy Time, Crip Time” project that came afterwards.
2. An essay by Amalle Dublon on strategies of visibility and occlusion in relation to disclosure and ethical forms of representation. Some people are expected to perform their lived experience to be believed or permitted access: the expectation of the delivery of this form of expertise is often compelled from certain subjects until it is the only expertise they are permitted to deliver. Reflections on the curatorial and artistic methodologies practiced with community groups and in artworks that took place during the project.
3. An essay on access and curatorial practice in arts organizations. Includes the merging and reworking of two published essays, “Accessibility in and Beyond the Quagmire of the Present,” from Contemporary Art and Disability Studies (Routledge, 2019, edited by A Wexler and J Derby) and “Notes for Sick Time, Sleepy Time, Crip Time – a field guide,” (Banff Centre, 2021).This essay introduces access as both material and concept in art, primarily through the art of an artist in the “Sick Time, Sleepy Time, Crip Time” exhibitions, Park McArthur, who takes a radically imaginative long-view of another (more accessible) world that contains many worlds. Taraneh compares the power an artist may have in their unique embrace by institutions to facilitate accessibility to that of the freelance curator. The essay addresses the limits of accessibility initiatives in neoliberal art organizations, which usually approach access as retro-fit processes through the lens of inclusion and diversity instead of through structural change towards disability justice, racial equity, abolition, and decolonization. Taraneh looks at how her access work at Bemis Center was firstly resisted and later recuperated by the institution when it needed to defend its inaction on racial equity. The essay goes on to show the evolution of Taraneh’s approach to access as she moved from working on institutional change to focusing on developing access needs in community practices, which directly overlap with racial equity and decolonization processes. It offers a series of vignettes written through the first years of the COVID-19 pandemic and global uprisings against anti-Black racism to illustrate this. This thinking on access as practice offers Relentless Bodies’ cultural activities as an alternative, and introduces ideas that will be expanded in the book section developed and edited by them.
4. An essay by Owólabi on the inseparability of ableism, racism, and environmental injustice, rooted in his work in climate justice and ancestral healing. Owólabi will address the complexity of embracing a disabled identity for Black people in the grassroots communities he organizes and creates within and the relationship between racialized debilitation, state violence, and the environmental toxicity produced by capitalism. His essay will outline a New Afrikan framework of disability justice. “New Afrikan” is a Black nationalist framework incorporating reparations and the formation of a separate nation in the Southern US with reconnections to African ancestry.
Three examples of tools:
1. Access riders developed by artists working across various contexts. Emerging from the contract riders used in live performance and music, access riders are used by disabled artists when negotiating working conditions. An access rider is a document that artists can provide an inviting institution or cultural organizer to let them know what is needed to facilitate their equal access to work and to be well supported in the creative process. Often an artist uses this to make access requests for audiences and staff as well.
2. Community Benefits Agreements (CBAs). Relentless Bodies introduce CBAs, which are an agreement-generating process between community groups and real estate developers or cultural organizers that result in a contract wherein the outside party promises to provide specific amenities over time. This piece looks at the history of CBAs, from how they originate in government mandated processes around large building developments like stadiums, to their subsequent opt-in use in the field of arts and culture. It summarizes some lessons learned through specific CBAs, focusing on a CBA being implemented by Allied Media Projects, a social justice media and cultural organization that is developing a building in the city. Taraneh who was a member of the disability justice/access committee for Allied Media’s LOVE building gives a brief history or CBAs. Interviews with Halima Cassells, community artist and organizer who has been active in multiple CBA processes (including the one for Allied Media), and Jennifer Lee, the facilitator who led the CBA process, will reveal some of the benefits and challenges in implementing such a tool.
3. Decolonial Rider. Created by Relentless Bodies in solidarity with Indigenous people and Land Back struggles in Waawiiyaatanong/Detroit. This piece will draw from a decolonization rider created for interaction with/within institutions developed by Emily Johnson/Catalyst, and questions of kinship and decolonization in community. It proposes a combined disability and healing justice way of showing up for these struggles that emphasizes Indigenous senses of wellbeing as tied to restoring the interdependence between humans, non-human beings, elements, and spirits. In relation with Indigenous artists, it will be developed from the perspective of Relentless Bodies – non-Indigenous racialized people living on land that was stolen who experience different effects of colonization, slavery, and US imperialism.
Two essays in progress from the book:
“Notes for Sick Time, Sleepy Time, Crip Time – a field guide,” Banff Centre, Curatorial Futures Program, 2021
A conversation by the editors with artist Leah Clements:
“Holding Space Across Crip Time: Leah Clements, Taraneh Fazeli, K MacBride,” Serpentine Galleries, 2021
A review of the “Sick Time, Sleepy Time, Crip Time: Against Capitalism’s Temporal Bullying” exhibition, with a focus on time: