Stitched, thread-to-thread from the sickbed by artist and writer Jamila Prowse, Crip Quilt, 2023, is a collectivising of disabled experience. Created over 15 months, the work is a labour of love, as this kind of long-form textile work often is. As such, the work brings together contributions from the National Disability Art Collection and Archive (NDACA), along with the artist’s own lived experience and three new collated oral histories from disabled artists of colour.

Informed by grief and trauma work, as well as methods of disability justice and access intimacy (1), Jamila’s practice spans textiles, moving image, writing, performance, photography and painting. Although predominantly self-taught as a visual artist, Jamila comes from a line of female practitioners who have used art-making as a means of production and thinking; threading a legacy of materiality throughout her work.

The quilt itself, which will become a permanent part of the NDACA, is an assemblage of squares and rectangles in a multitude of colours, tones, depths and intensities that bring together a multiplicity of disabled voices. As a method, quilting traditionally comprises the stitching of layers of material together, with a layer of padding or wadding in between. The stitches are usually based on a pattern or design connected to different ideas, themes or traditions and cultures. And this work, as with much of the history of textiles, is a history of women’s work:

“Whether hung over beds, laid on floors or worn on the body, textiles have a unique ability to communicate collective histories and individual stories. Over time and continents, this tradition has evolved. From Chilean arpilleras to quilts from the American South, textiles have become a powerful way to shape identity, build community and prompt political action.” (2)

And this quilt no less so. The labour, undertaken at home, occasionally on trains or in hotel rooms, was made on crip time and put together with the collaborative support of textile artist Divya Osbon.

Crip time, as defined by Alison Kafer, is the necessity to understand time in an expanded way, outside of the ableist arc, to acknowledge – some might say celebrate – different lived realities. (3) And Crip Quilt exemplifies this expanded encapsulation of time and lived realities, both in its very making and in the voices stitched into its fabric.

There exist different intellectualised models of disability. Many in the disabled community identify most strongly with the social model of disability, which is the understanding that disability is something created by society rather than resting with the person, in direct opposition perhaps to the medical model which defines a person by their ‘health problem’. In Health Communism, Beatrice Adler-Bolton and Artie Vierkant argue that capitalism is inextricably entwined with the concept of ‘health’ itself and support Marta Russell’s assertion that there exists another model of disability beyond the dominant understandings of the ‘medical’ and ‘social’: “The money model of disability identifies what is in essence a ‘cure’ for the existence of unproductive bodies under capitalism” by creating a financial paradigm based on our very need for support. (4)

Crip Quilt sits outside these capitalist structures and the act of stitching moves beyond the borders of conventional markets. Crip time expands and disrupts notions of what might be considered marketable value, just as interdependency of disabled movements, disability justice and access intimacy works to interrupt the capitalist structures of normative care that do not work for many in the crip and sick world. A disabled-designed future is essentially anti-capitalist and, for the artist, these methodologies of making become conduits for thinking through abolition and transformative justice – a crip world-making that “emerges from the stuff of daily living for disabled people navigating and remapping the world as it is”. (5)

Jamila sees her practice as highly referential, both of herself and others, recognising this as a means to build a visual language and articulate her experience of disability through creative means. Influenced by how disabled artists have managed the physical and institutional barriers in society alongside having an artistic practice, Jamila is compelled by the articulation of the impact of disability on practice, and the compulsion to do so at all.

For many marginalised identities, there can be a pressure or expectation to address that identity in the work being made, which can feel restrictive. For others, art-making can be a tool to define experience usefully. Even if not making work specifically about being disabled, often it might be informed by that experience – a mode of communication which, when largely housebound for example, can be a lifeline, a way to create a dialogue out of isolation.

Although Jamila has worked at the forefront of disability and access work for several years, the 20/20 commission provided the first opportunity to fully engage with the NDACA archives and the disability histories held within, drawn in particular to the activism shared through oral histories. Whilst connecting to the existing archive, Jamila also collated three new oral histories with artists of colour to begin to address the considerable gap in representation of intersectional experiences between race and disability.

With a desire to continue privileging and holding oral histories as a traditional source of knowledge-sharing, as has been done historically across the African continent for centuries, the artist is compelled by the means of capturing the voice, in opposition to colonial forms of written communication. Speaking with Elora Kadir, Djofray Makumbu and Jameisha Prescod, and weaving in her own lived experiences alongside several artists from the existing archive, Jamila brings together a collection of stories that reflect the plurality of disability experience.

Dreaming up alternative access worlds with each, Jamila spent time with these artists: “When I got ill, it forced me to reimagine the ways in which I could still make the art I want to make”. As well as time listening and learning from the existing archives: “People were standing and dancing and having a ball”. Noting down moments from conversations: “One of the biggest barriers is the unrealistic expectations of time”. And holding witness to the voiced experiences and rearticulating them: “People just need people to believe in them, it gives them extra battery.”

The histories of disabled artists and others who have been marginalised have systematically been erased from – or simply never collected for – records in the first place. It is important to recognise that, as writer and cultural programmer Jemma Desai has spoken about, history is often repeating itself, even if it hasn’t been visible, and that many have gone before us. In this acknowledging we can better understand how a community might have got to where it is. Through Crip Quilt Jamila continues this archival work, bringing together new and old stories stitch-by-stitch, sharing an act of solidarity and listening – to the body, the self, the collective and the voice that needs to be heard.

As I learn more about Jamila’s work, I reflect on how resistance might be collected and come back to a question Robert McRuer asks: “Where in the world might crip resistance be located?” (6) The artist defines a continual grief in the disabled experience – often, for example, we don’t feel disabled in our homes, because this is a space we are least likely to experience the disabling barriers of the outside world. So, the quilt as a domestic object serves also, perhaps, as a grief object, collectivising and holding witness and “moving towards a disabled future that isn't curative”. (7)

As an artist navigating complex and often violent institutional systems – an experience with which many of those who identify as disabled will be deeply familiar – Jamila has found ways to reflect the world as she seeks to understand it, using art-making as a means of world-building, to imagine what might otherwise be possible.

An incidental project to the artist’s relationship with the NDACA archives is Flare, 2023. Inspired by a project through which disabled artists documented their lives with disposable cameras, this DIY photography series is also heavily influenced by the candid and unwavering work of Nan Goldin. Investigating in detail how one might share the daily living of life within and alongside crip-ness and sick-ness, the project looks to destigmatise the unseen but very tangible reality of its everyday playing out. Flare is a testament to how we might move through this world in fluctuating ways, in accordance with fluctuating disabilities, fluctuating lives, slowly. As Tina Campt helps us to define, slowness can be a way to pay attention to what is overlooked. (8)

Alongside the context of Crip Quilt, the materiality of its making is equally significant, through the physical neuron pathways that are fired up in its sensual, tactile existence. Quilts are made to cover, wrap, bind, shield and to care: “The world takes care of itself in many invisible ways, by many invisible hands.”(9) Crip Quilt is also weighted – a tool used in the crip world to manage anxiety conditions and alleviate flare-ups or autistic burnout.

Thinking through access often unlocks a practice in unexpected ways. The artist hadn’t anticipated the reimagining of her ideas through sound but the invitation into the work created by the audio description is one that seeks to generate a sense of equivalence, an attention and attentiveness to the production of multiple access routes expanding the commission far beyond its visual remit. For “when we enter the world of one access consideration, we might recognise its value in another access experience, whether our own, or not… this creates an access intimacy”. (10)

The reality is Crip Quilt was made from the sickbed – confessional and diaristic; a life changes in the time it takes to make something of this scale and intimacy, it is in the stitches so to speak. And, in turn, it took time to write this, because crip time manifests in many trips and cracks, because those lived realties are many and more, and the world keeps setting itself on fire. And in the middle, sometimes there is an island, a beautifully stitched island holding stories and histories and reminders that the life so many have fought for is this life here, emblazoned, interdependent and gloriously crip.

In Crip Quilt you are touching history. Lie under it, let the weight hold your anxiety and burnout at bay. Because many hands, many voices, are how the disabled world works, interdependently. Writing about the liberation of Palestine recently, Jamila spoke powerfully about what it means to activate in the ways that we can: “The power of collective solidarity is to keep moving forward regardless of our individual capacities, and to hold space for each other to come to the resistance in whatever way we are able.”(11) And, as she aptly shares, Johanna Hedva has shown the way for a long time, that activism is not only made of the loud, shouting, running in the streets kind. Whilst wildly and equally as important, there is also a quieter, slower, crip activism that happens. (12) It takes place in the witnessing, in the making visible, in the opening up and the taking to task, all from the sickbed – and what a mighty sickbed this artist lives within. And no, it is not easy, but it is real, and it is a dialogue that must be kept open, witnessed in return, and held, with the same softness and weight that Crip Quilt offers. For crip-ness is always in commune, we might crip without adequate support from the state but rarely do we crip alone.

This was written from a conversation with Jamila in September 2023, in crip solidarity always.

Endnotes

1. See Mia Mingus, Access Intimacy: The Missing Link, https://leavingevidence.wordpress.com/2011/05/05/access-intimacy-the-missing-link/

2. https://womensart.murrayedwards.cam.ac.uk/event/what-lies-beneath-women-politics-textiles/.

3. See Alison Kafer, Feminist Queer Crip (Indiana University Press, 2013).

4. Beatrice Adler-Bolton and Artie Vierkant, Health Communism (Verso, 2022), 15.

5. In reference to Robert McRuer, “This Is What Disability Looks Like Project” in Crip Times; Disability, Globalization, and Resistance (New York University Press, 2018), 93.

6. McRuer, Crip Times; Disability, Globalization, and Resistance, 92.

7. 20/20 Introduction interview with Jamila Prowse, https://www.arts.ac.uk/about-ual/press-office/stories/2020-meet-the-artists-jamila-prowse.

8. See in conversation, “Slowness: A conversation between Tina Campt, Saidiya Hartman, Simone Leigh and Okwui Okpokwasili”, https://www.youtube.com/watch?v=SxKk42EEgOY.

9. Radicalizing Care; Feminist and Queer Activism in Curating (Sternberg Press, 2021), eds. Elke Krasny, Sophie Lingg, Lena Fritsch, Birgit Bosold, Vera Hofmann, 40.

10. In-conversation with Jamila Prowse, London, September 2023.

11. https://jamilaprowse.substack.com/p/liberation-diary-1-do-i-have-a-role.

12. See Johanna Hedva, Sick Woman Theory, https://topicalcream.org/features/sick-woman-theory/.