Rethinking Crip Time and Embodiment in Research

Louise Atkinson, Jamie Hale, and Kirsty Liddiard introduce their new co-produced project ‘Cripping Breath’, which centres and explores Crip perspectives on respiration.

Introduction

‘Cripping Breath: Towards a new cultural politics of respiration’ is a five-year co-produced project that centres the lives of people who use ventilatory medical technologies (Wellcome Discovery Award, 226472/Z/22/Z).

As a diverse team of clinicians, artists, academics and others with lived and embodied experience of disability, chronic illness, and neurodivergence, we are broadly exploring breathing and ventilation (e.g. forms of medical technology that support respiration) through arts-informed, archival, narrative and ethnographic research approaches. Cripping Breath aims to forge new understandings of respiration from Crip perspectives (see McRuer 2006), which unapologetically centre disability as a valued human experience. We aim to challenge breathing as an autonomous and natural function that is framed as central to our humanness and ability to live, the absence of which brings us close to death (see Solomon 2020).

In this essay, members of the project team draw upon personal narratives and embodied experiences of respiratory failure and neurodivergence to think through crip time. Crip time (Kafer 2013: 27) refers to the relationships between disability and time:

‘Crip time is flex time not just expanded but exploded; it requires reimagining our notions of what can and should happen on time, recognising how expectations of “how long things take” are based on very particular minds and bodies….’

We follow Gauthier-Mamaril’s (2024: np) call to resist flattening the concept of crip time to the solely physical, and to acknowledge ‘the diversity of disabled/mad/chronically ill/debilitated communities’. In doing so, we explore the ways in which time is experienced in different contexts and by different people within the wider project team, to understand how our project processes can centre disability experiences within the inquiry.

As with previous definitions, our exploration of crip time is multifarious (see Samuels 2017), encompassing how time is conceptualised and enacted at different scales, both internally and externally. These range from extended ideas of time, such as milestones and lifespans, to the minutiae of pacing and prioritising tasks in a co-produced project, and how these impact upon one another.

Organisational time

Organisational time explores ideas of scheduling; prioritising; deadlines; processing, being “on time” and feeling “out of sync”. We begin with the clinical description of ADHD (attention deficit hyperactivity disorder). ADHD is classified by the primary symptoms of hyperactivity, impulsivity and inattention. However, recent research recommends that time perception should also be a core diagnostic criterion, based on marked differences in time estimation and cognitive processing speed (Weissenberger, et. al 2021).

Furthermore, Nielsen (2017) suggests that ADHD is characterised by bodily arrhythmia and desynchronisation; the first of which is a psychological sense of time moving (too) fast, and the second, a temporal dislocation between an individual and their surroundings. A similar dislocation emerges from life with chronic respiratory illness, and energy-limiting conditions and symptoms, disassociating one to time, speed, pace, and everyday life.

As Kuppers writes (2014: np.)

‘…there is the day we lie in bed, the time of pain blooming in our bones, the end of the street impossibly far for limping legs, the meeting and its noise assault set against the reassuring tick of the wall clock at home’.

We are trying to think through this in Cripping Breath in a multitude of ways. As an example, we want to enable people to contribute at their own pace to some of our arts-informed data collection methods. We will provide materials in advance, and embrace asynchronicity and hybrid technologies, to embed crip time into the project by encouraging people to immerse themselves artistically in flexible ways over the lifespan of the project.

Extended time

Extended time considers time in the long term, implicit in ideas of lifespans, milestones, biological clocks, running out of time and being on “borrowed time” (Liddiard et al. 2022). We are also reflecting on the possibilities and challenges of a longer-term project for people with potentially life-limiting conditions. Respiratory failure, and other forms of progressive respiratory impairment, bring about a strange relationship to time. They are quite often clocks that cannot be stopped and which clash with neoliberal-able timelines (see Goodley and Lawthom 2019).

In a former project (Liddiard et al. 2022), young people living with life-limiting and life-threatening impairments (LL/LTIs) stressed how their experiences and engagements with time conflicted with ableist, developmentalist and neoliberal concepts that dominate euro-Western temporalities. The “normative” life trajectories of school, adolescence, university, paid employment, marriage and parenthood took on new meanings as young people talked about how these frameworks often didn’t fit their own life experiences.

We connect here to lived experiences of neurodivergence in the Cripping Breath project team:

‘Crip time for me is reflected in the ways that many normative milestones in my life were delayed or missed out altogether. The opportunity to ‘bend’ time meant that I was able to go to university later in life and graduate with a PhD. Crip time aligns with the flexibility associated with being self-employed and allows me to cultivate my work around my interests.’ (Team member, Cripping Breath)

In Cripping Breath, our focus on clinical forms of ventilation – such as BiPAPs and CPAPs[1], common forms of ventilators – is rooted in critical desires to situate medical technologies as vital, life-sustaining enablers of our Crip futures. Some of our team are users of such ventilatory technologies:

‘Betty BiPAP is my ventilator, and she works by providing me with pressure during sleep, when diaphragmatic function is most important. Betty is the ultimate crip time device. She quite literally gives me time by slowing down the biological clocks imposed by forms of respiratory failure. We are an assemblage: she is part of me, embodied in how I live in the world.’ (Team member, Cripping Breath)

Our relationships to such technologies, then, contest discourses that define breathing as the ultimate independent and autonomous act (see Abrams et al. 2021).

In contexts of ableism, which ‘denote broad cultural logics of autonomy, self-sufficiency and independence’ (Whitney et al. 2019: 1478), to breathe by yourself is to be fully human. Yet one only has to look to posthuman disability studies to counter such fallacies, and learn how interdependencies with a network of technologies, non-human animals, and other entities enable more expansive, relational and nomadic engagements with the world (Whitney et al. 2019). 

Rest, recuperation and recovery time

In Cripping Breath, rest, recuperation and recovery time considers how we are thinking about ethical pacing and ways of working together. Often, this means embracing ‘slow scholarship’ (see Berg and Seeber 2016; and Mountz et al. 2015) – ‘strategies to work together to slow scholarship down as part of challenging the growing inequities in higher education’ (Mountz et al. 2015: 1238). We do so purposefully to push the boundaries of what’s possible (or not) in the neoliberal academy and to play with the temporalities of normative research processes which are typically fast-paced and output-oriented.

Such accelerated timelines, which are both expected and institutionalised in the academy, for people who experience differences in time perception, can lead to miscalculations in how much one can (or indeed, should) realistically achieve over a set period, leading to eventual burnout. And perhaps not surprisingly, living with forms of respiratory impairment and/or using ventilation can mean dealing with fatigue, breathlessness, limited energy (particularly over longer periods of time), and a sensitivity to minor illness, whereby something as simple as catching a cold can mean weeks of struggle and recovery.

Project processes can and do get slowed down by prioritising flexibility around hospital appointments, taking time off sick, waiting for antibiotics and other medications to kick in, and managing sudden hospitalisations and surgeries. Actively making space for the team to rest, recuperate and recover takes on a new meaning as we build in contingencies, use organisational technologies to share and document our work so someone else can jump in when needed, and resist the work-intensive temporalities of academia.

Paradoxically, the distortion of time-perception and a shortened lifespan can create not just a slowing, but also a speeding up of time. For someone spending a lifetime ‘recovering’, crip methodologies also need to build space to allow for work at a more rapid ‘Crip pace’. Differentiated from the fast-paced temporalities of normative research, this does not work at a mandated speed to meet deadlines, but holds space for a multitude of speeds of delivery within the constraints of the project.

Conclusion

In this post, we have attempted to elaborate on definitions of Crip time (following Kafer, 2013; Gauthier-Mamaril, 2024; and Samuels 2017) to explore how time is experienced in different ways and how this is shaping our new project, Cripping Breath. We purposefully centre an ethical and inclusive approach to research and scholarship that we feel enacts crip time, embracing flexibility, adaptability and radical care as routine across our team, because we all bring various types of impairment, embodiment, and chronic illness (see Piepzna-Samarasinha 2018). Our approaches also support the relational labours that authentic co-production with marginalised and minoritised people requires (see Liddiard et al. 2022; see also Budworth 2023 for an insightful take on centring care, comfort, and capacity in research).

We will be continuing to think through these questions as an iterative process throughout the project and beyond. To keep up to date with our project, please follow us on X (@CrippingBreath) and see our website.

About the authors

Louise Atkinson is a visual artist, researcher, and facilitator, and is currently based at the University of Leeds as a Visiting Research Fellow. Her practice explores the relationship between art and ethnography, in which she employs a range of visual and digital media and techniques. She is an Artist-in-Residence in Cripping Breath (Wellcome Discovery Award, 226472/Z/22/Z).

Jamie Hale is the founder and Artistic Director of the award-winning CRIPtic Arts, which develops work with and by disabled creatives, centring creative accessibility within the work they are making. They are an Artist-in-Residence in Cripping Breath (Wellcome Discovery Award, 226472/Z/22/Z).

Kirsty Liddiard is a Senior Research Fellow at the School of Education and iHuman at the University of Sheffield. Her research broadly explores how disablism and ableism inform and shape everyday lives of disabled people. She is the Principal Investigator in Cripping Breath (Wellcome Discovery Award, 226472/Z/22/Z)

References

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[1] BiPAPs and CPAPs are common forms of ventilators: BiPAP therapy offers bilevel positive airway pressure; CPAP therapy offers continuous positive airway pressure.

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