‘This Constant Judgement Call’: Living with Traumatic Brain Injury as Crip Time

Abstract

This article investigates the shifting temporal dimensions of living with traumatic brain injury (TBI) and persistent injury-related symptoms (PIRS). Drawing from 30 semi-structured interviews, we use the concept of crip time to explore how the participants navigate, perceive, negotiate and embody time differently since injury. Through the themes of waiting time, work time, pacing time, and unpredictable time, we illustrate how crip time is both a valuable resource and constraint for people living with TBI. These central themes provide insight into how and why participants moved in and out of normative time across different and intersecting life domains. Our findings demonstrate that moving in and through crip time helped participants to re-frame their life to centralise their needs and wellbeing, which is a radical act of self-determination in ableist and neoliberal capitalist society that demands time to tick to non-disabled ways of being and living.

Introduction

Traumatic brain injury (TBI) occurs from an impact to the head or rapid movement of the brain inside the skull, which can cause alteration or damage to brain function (Pavlovic et al., 2019). Notably, there may be no visible ‘evidence’ of injury, meaning TBI is ‘invisible’ (Alston et al., 2012; Pavlovic et al., 2019). Significantly, TBI impacts are not only acute. TBI is increasingly recognised as a chronic illness that can be disabling, with long-term impacts including persistent injury-related symptoms (PIRS) (Dams-O’Connor et al., 2023). Due to the potential invisibility of TBI and its chronicity, many people do not see the ‘hidden work’ that goes into managing long-term TBI-related PIRS, including persistent difficulties with sleep, memory, attention, chronic pain, migraines, mood instability and fatigue (Alston et al., 2012; Dams-O'Connor et al., 2023; Pavlovic et al., 2019). While not everyone who has a TBI experiences ongoing symptoms, for individuals who do PIRS can become a barrier to them achieving their goals (i.e. to work and sustain relationships), which can cause significant emotional distress and frustration (Alston et al., 2012; Dams-O’Connor et al., 2023).

In this article, we investigate how 30 people with chronic TBI-related symptoms manage their PIRS, with a focus on ‘crip time’. Specifically, we explore how the participants navigate the shifting crip temporalities through the themes of waiting time, work time, pacing time and unpredictable time. This discussion of crip time offers insight into how time is both a valuable resource and a constraint for people with PIRS from TBI. We argue that crip time is useful for understanding how individuals negotiate, perceive and embody time differently after injury, as well as what crip time offers for non-disabled bodyminds.

Crip Time

As a concept, crip time describes the temporal dimensions of ableist oppression, as experienced by people with disabilities. It highlights and questions how societal structures shape and create demands on how time is experienced and used (Awkward-Rich, 2023; Kafer, 2013; McRuer, 2006; Samuels & Freeman, 2021). Crip time is not in strict opposition to ‘normal’ time, but recontextualises how linear time can be understood and perceived. This allows consideration of the experiences of disability (becoming disabled, and accepting and developing one's identity as disabled, etc.), and how normative (linear, clock) time privileges those who are non-disabled in ways that are not useful, true or respectful for people with disabilities (or chronic illnesses that are debilitating). Notably, people with disabilities live in and move through time in ways that do not always align with (ableist) capitalist neoliberalist societies, where time is deeply related to productivity, normalisation, compliance, regulation and control, which positions those with disabilities as ‘problematic’ and burdensome (Humphrys et al., 2022; Rodgers et al., 2023; Samuels & Freeman, 2021; Sheppard, 2023).

Crip time allows exploration of how time can work differently for people with disabilities, being slower, quicker, fluctuating, fluid and asynchronous (Rodgers et al., 2023). It can involve renegotiating time from minutes or hours, to the broader and ever shifting patterns of life. Crip time may include needing time to manage the ‘reliably unreliable’ aspects of chronic illness, neurodiversity and mental health conditions (Awkward-Rich, 2023), such as irregular sleep or moving slowly to reduce exacerbation of unwanted pain (Sheppard, 2023). Instead of complying with the non-disabled world that demands people with disabilities push their bodyminds to their limits to ‘keep up’ (Price, 2015), crip time is extra time to find new ways of thinking, feeling and moving (Kafer, 2013; Samuels, 2017) that can be radical acts of self-determination. By refusing to live in normative time – whether by choice or by necessity – time ticks to the metronome of the individual demands and needs of disabled bodyminds (Darcy, 2024; Price, 2015).

By living in crip time, people with disabilities may not experience a ‘firm delineation between past/present/future or an expectation of linear development from childhood to adulthood’ (Kafer, 2013, p. 34). This is because the construction of personhood is closely tied to a culturally prescribed script of meeting ‘age-related milestones’, and social expectations of participating in the institutions of marriage, family and the workforce at particular chronological ages (Freeman, 2010; Wool, 2021). People with disabilities live in (and need to create) their life unbound from normative social scripts in ways somewhat similar to queer people, who also create their own temporalities (queer time) (Freeman, 2010; Halberstam, 2005). Crip time and queer time capture a divergence from ‘normal’ straight time and can allow an expansion of thinking and being in time to be embraced,¹ That is, crip time allows empathy and an appreciation of the diverse ways of being and doing that are not bound by linear time and facilitates listening to bodyminds – a valuable resource for disabled and non-disabled people alike.

To date, how people with TBIs experience crip time has not been adequately explored. Most research on people with TBIs focuses on the timing and duration of TBI recovery such as rehabilitation, but not the individual's phenomenological experience of time (Costello et al., 2024). The limited research on time and TBI often includes TBI as one of a mix of different ‘types’ of disabilities (Darcy, 2024) or as a singular case study. For example, Wool (2021)'s case study on one war veteran with a TBI, applied crip time analysis to examine broad normative life-course expectations in the context of the US military. Our article expands on such findings by examining how multiple people with TBI must negotiate crip time across different contexts and everyday experiences.

We found crip time captures how the participants describe being in/through normative and non-normative time (Kafer, 2013; Sheppard, 2020) though we wish to note that while all participants identified with living with a chronic illness, not all of them identified as disabled. This may reflect individual understandings of disability (for example, that it does not include chronic illness), or be a response to wider cultural values that celebrate normative bodyminds and non-disability, and devalue those with chronic illness and disability as ‘dependent’ and in need of ‘care’ (Thomas, 2007). Regardless of whether the participants identify with living with a disability or not, all the participants (as well as people who are non-disabled), are subject to ableist expectations (Mauldin & Brown, 2021).

In this article, we consider crip time for people with TBI in relation to their day-to-day movement through time to highlight how the participants interpret and re-negotiate time after injury. The distinction between their experience of time before and after injury is important. After TBI, some people may conceptualise, perceive and embody time differently than before injury due to physical, cognitive and behavioural changes in brain chemistry (Elliott, 2022) and/or because of the social expectations of how time should be experienced and managed; all of which were discussed by the participants in this study.

While the participants may experience time differently following TBI, it should be noted that time is socially constructed. Time is part of social control, order and oppression that fosters social inequalities. Drawing on crip time allows us to explore this construction of time, and how it adversely impacts disabled bodyminds. Deepening existing conceptualisations of crip time and contributing to the sociology of disability, we explore the implications of waiting time, rejecting and renegotiating work time, and how people with TBI find alternative rhythms to life through pacing time and managing the unpredictable time associated with PIRS. By exploring these themes, we demonstrate the different temporal dimensions people with TBI experience and negotiate in their daily life, the social inequality embedded in normative time, and how participants reject or reconstitute normative time.

Methods

Our article focuses on 30 people with TBI, and their experiences following one or more TBIs. To gather the data, we employed semi-structured interviews (n = 29) and diary methods (n = 5, four of whom were also interviewed). The 30 participants include 19 women, 10 men, and one non-binary person, aged between 21–69 years of age, and living across six states in Australia. Time since injury varies from 1–48 years, with an average of 16.5 years since the initial/first injury. The sample further includes six people from non-Australian backgrounds (i.e., European or South African) and five people who are Aboriginal and/or Torres Strait Islander (hereafter respectfully identified as Indigenous). With 16 per cent of the sample being Indigenous Australians, this is well above the estimated 3.8 per cent of the Australian national population (Australian Bureau of Statistics, 2024). We note this sample number may reflect that Indigenous people are 2.8 times more likely to sustain a head injury compared to non-Indigenous people (Australian Institute of Health and Welfare, 2023). As these participants come from different Indigenous communities and Countries, it is challenging to explore specific and local Indigenous knowledges and experiences, particularly given how recruitment occurred (addressed below). Research that explores Indigenous Australian perspectives, knowledges and experiences – and with a specific focus on Indigenous women with TBI in regional and remote Australia – can be found elsewhere (Fitts et al., 2024; Wills & Fitts, 2024).

Our recruitment involved purposive (people with TBI) and snowball (word-of-mouth) sampling. The project information and consent form were advertised and distributed through brain injury associations, education facilities, sporting groups and community centres, and on social media. Individuals interested in participating in the project subsequently contacted the research team. After this, we organised a pre-screening meeting with the participant to assess whether there was a presence of ongoing trauma related to their TBI which could make participation in the project harmful to them. The Trauma Screening Questionnaire (TSQ) is a set of yes/no questions on a 10-point scale in which a high score of 6 or more, indicates the probable presence of trauma. This tool was designed by psychiatrists to be used by researchers to mitigate instances in which they may inadvertently exacerbate existing trauma in a participant (Brewin et al., 2002). In this study, only one person was excluded from the study based on their high TSQ score, who was referred to support services they could access for ongoing support.

Data Collection and Analysis

Semi-structured interviews facilitated participants to narrate how their TBI has impacted them. While interviewers ensured they used the same questions across participants (How has your life changed since TBI?), we remained flexible and open to any topics related to TBI as raised by participants. This approach gave participants autonomy over what they wanted to share, including raising more pressing topics, which might otherwise have been missed. Importantly, the flexibility and intentionality of our trauma-informed interview style meant we let things unfold, practised patience, and built rapport with our participants by providing space for them to process difficult memories and emotions as they emerged (Mauldin, 2023). In doing this, we embodied crip time as interviewers by creating a temporal space to slow down, take breaks, and listen to participants without being driven by clock time (see Samuels, 2017), which also recognised and supported our own bodyminds as disabled and chronically ill scholars. These processes were essential for discussing PIRS, particularly when the rigidity of a structured interview can close off or deny participants the ability to feel supported to raise topics meaningful for them. Most interviews took an hour and were conducted over the telephone or online via web conferencing software. Interviews were digitally recorded, transcribed and reviewed by the authors.

Participants could also complete a diary. We provided the participants with a series of questions similar to the interviews, and they selected which questions they responded to and in as much detail as they liked. The diary method facilitated engagement when it was convenient for the participant, particularly those who struggled with the dialogical demands of an interview (such as difficulty with sustained attention and memory recall). Diaries were also an opportunity for participants to be self-reflective, which allowed the research team to examine the participant's introspective process (Broom et al., 2015). Diary participation varied, with some participants completing the diary once a week, or multiple times across several weeks. Participants said that they found this useful:

I feel like the diary writing is getting repetitive. It is interesting for me to notice this because maybe I am coming to a recognition of how everything effects my day-to-day functioning. My awareness has increased. (Holly #11)

Throughout this article, when using direct quotes from the diaries, we have added numbers alongside participant's names (such as above) to indicate which diary it is from. When the participant's name only is presented, this refers to semi-structured interview data.

We examined the diary entries and interview transcripts through thematic coding. Using NVivo and printed transcripts, we immersed ourselves in the data for several months, coding collaboratively and discussing potential themes. This interpretative process included refining and discarding themes, finding new meaning in sub-themes and revisiting old ones; a ‘messy’ and deeply immersive process that continued throughout and well after the data collection had ended (Braun & Clarke, 2006). As such, the concept of crip time in this article was identified a posteriori. This research was approved by the University of Tasmania Human Research Ethics Committee (reference number H0027039).

Results

Participants described life after TBI as a process of finding new rhythms, patterns, and ways of managing their bodyminds, while normative time ticked on. Some tried to ‘keep up’ with the fast pace of normative time, usually at a personal cost. Through trial and error, they developed an understanding of how their bodymind had changed since TBI and how to accommodate it, listening to their bodies and acknowledging the reply (Samuels, 2017). Finding their own capabilities and window of tolerance came with pressing their boundaries with apprehension, or complete over-exertion that came with symptom flare-ups and forced rest. We examine how participants experience crip time through their shifting temporalities of waiting time, work time, pacing time and unpredictable time.

Waiting Time

‘Waiting time’ involves physically waiting (for example, in waiting rooms and in hospital emergency), or the existential feeling of waiting and being stuck between possible diagnosis and treatment (Kafer, 2021). It involves crip time through a temporal shift outside of normative time, with the participants expressing tension between the desire to find a ‘sense of normality’ and ‘keeping up’ with clock time. Waiting time is also suspended time, where the rhythm of life is lived in unknown cadence between symptom management and the unmanageable.

The crip time involved in waiting for healthcare and support is a ‘slow death’ in which the very act of waiting for timely care (or being denied) can worsen underlying conditions and cause further harms or disablement (Berlant, 2007; Bundy, 2022; Goodley et al., 2014). Shay, who has experienced repeated head injuries, had become dissuaded from seeking help:

I’d had seven diagnosed concussions over eight years prior to [the last one]. […] I just got over sitting there in the hospital […] [The] bright lights, screaming babies, really loud [noise in emergency], all that stuff that isn’t great when you’ve got a concussion. And then [doctors] just asked you some questions [then say] ‘you can go home [but] come back if it gets worse’. So you’d wait five hours for like a 30-minute appointment and then get sent home. So that was just, no use going half the time. (Shay)

Shay's frustrations are linked to waiting time being too slow, which is exacerbated by an environment full of sensory triggers that, when dealing with concussion symptoms, can be overwhelming. While Shay is Indigenous, she did not raise her Indigeneity in relation to time, though it is significant that clock time does not align with Indigenous time (see note 1) nor crip time. Nevertheless, in their work, Wills and Fitts (2024) noted that some of the Indigenous women in their study left emergency departments before being assessed owing to long wait times. There is the potential that Shay (and other Indigenous participants) may experience intersectional discrimination within the Western medical system that devalues holistic Indigenous understandings of health (and disability), which may facilitate rejection (both being rejected by the medical system and rejecting it themselves).

For many participants, more waiting would come after emergency presentation and consultation with a general practitioner (GP, also known as primary care physician or the family doctor): waiting for referrals to specialists and clinics, the processing of specialist referrals and assessments, and then on extensive waitlists. Gwen said it took six weeks to hear from the concussion clinic and for Astrid, it took eight weeks for a referral letter to be processed.

While non-disabled people may need to wait for medical care, waiting for medical care for people with TBIs means several weeks without appropriate support or rehabilitation – and some participants never received specialist referrals, despite their wish for such support. Long, slow stretches of time dedicated to waiting for healthcare for people with disabilities can feel like punishment (Kafer, 2021) and prolongs uncertainty. The unending stasis of waiting adds to their deep concerns about their health and wellbeing following TBI, and stalls their ability to ‘move forward’ in their rehabilitation or to ‘live’ with PIRS. As noted by Kafer (2021, p. 421), ‘For many the waiting is not for treatment but for (additional) injury, for (more) trauma […] waiting for the disability that is coming, unfolding, already under way.’

For people with chronic pain (a common PIRS for our participants), waiting time often leads to a lack of definitive treatment from doctors, yet there is a great deal of testing and seeing specialists that leads to more uncertainty and waiting (Sheppard, 2020). Waiting not only extends living in uncertainty but also a sense of stagnation and ‘slow time’, as the participants wait to create a future self that needs to be remade or adjusted due to TBI. As such, waiting time can be a form of institutionalised crip time.

Waiting time also encompasses waiting for medications to ‘kick in’ to reduce symptom flare-ups, or ‘waiting out’ for symptoms to pass. For those with chronic pain and fatigue from TBI, the reliance on pharmaceuticals to help was never guaranteed, making it rarely ‘worth the wait’. As Alex said:

Just getting up and getting going – fatigue is my biggest problem. I’ve taken my dexamphetamine [a drug often used for attention deficit hyperactivity disorder] and will wait for it to kick in. It doesn’t always help or give me enough energy to function. (Alex, #14)

Some participants chose to ‘wait out’ symptoms instead of relying on medication, with varied success. Hannah, Amy, Emily, Isla, Alex, Jade and Rowan described having a level of ‘resistance’ to drugs prescribed to help manage their PIRS, such as painkillers for chronic pain and headaches. Yet the chronicity and trajectory of treatment for ongoing TBI symptoms through targeted pharmaceutical intervention, cannot be subject to a one-size-fits-all approach (Dams-O’Connor et al., 2023).

For other participants, ‘waiting out’ symptoms was more ambiguous. Zayne said he felt constantly tired and had regular dizziness and headaches. When these symptoms occur, he said, they ‘put me in a bad [mental] place for the day, or for the however long a period of time before it got [sic] better. And there's not much I can really do but wait it out’ (Zayne). Similarly, when Isla is dizzy and fatigued, just opening her eyes can involve too much effort, so she rests and waits until her symptoms pass:

It can take 10 minutes. It can take an hour. And if I’ve really overdone it, it can take a couple of days – or a couple of weeks – of just sitting around waiting for some kind of energy to allow you to get up again. (Isla)

Negotiating days (or weeks) to rest when PIRS are at their worst runs counter to the demands of capitalist, normative time that structures days by work-based accomplishment/s. The demands of normative time continued to be a running theme throughout interviews and was most evident when participants returned to paid employment, in which they navigated crip time for and during work time.

Work Time

As previously indicated, neoliberal capitalism demands employees who can work to meet restrictive deadlines, to be flexible and available at the right time for the right amount of time, and to work overtime, early mornings, and late nights (Humphrys et al., 2022; Rodgers et al., 2023; Samuels & Freeman, 2021; Sheppard, 2023). Neoliberal capitalism runs on progressive linear time, and many assume ‘recovery’ from TBI will (or should) include returning to this pattern. Living in crip time involves challenging this normality of how work time is framed. In the interviews, participants noted how they wanted to keep up with and conform to (normative) work time but often struggled to do so.

Many participants who returned to paid work after their injury noted that the pressures of work time meant that they had to cease their employment. Kate, who had a staggered return to work plan that could (potentially) accommodate crip time, said she still ‘struggled too much’: ‘Not just with my physical issues, but with my thinking and being able to decide what to do and when to do it’ (Kate). The staggered work plan was aimed at supporting Kate (and illustrates how crip time can be incorporated into work time) but, as it did not encapsulate all her needs, it did not allow her to work within her own time or to take time to make decisions.

Similarly, Amy returned to work and found her PIRS difficult to manage while keeping up work expectations: ‘I couldn’t stand for periods longer of [than] 30 seconds or I would start to get dizzy, and I have very bad vertigo.’ Bryan noted that ‘I [got] tired, you know, halfway through the day. Just from doing computer work and, and that type of thing, and I would make mistakes.’ And for Jade, it was the commute to paid work which was exhausting. Work time necessitated additional travel time to stop and rest:

It was a 40- and 45-minute trip each way to work. It used to take me about an hour and a half, because I used to have to stop and rest, you know, halfway home. And that in itself was tiring. And then I would go and try to work. So I’d be exhausted from that. (Jade)

Jade's experiences show how she needed to take breaks as a part of her travelling routine. Taking breaks during her work commute before and after paid work, extended Jade's workday and, while necessary, contributed to her feelings of exhaustion.

In general, participants indicated that returning to work time had produced unexpected experiences of being different. Like a mismatched puzzle piece, they could not click back into the job that they had had prior to injury. Even as their world had shifted, clock time ticked on, and financial pressure and caretaking responsibilities persisted, meaning feelings of being forced or obligated to return to work, which may have gone against their doctor's advice to rest. For example, Cain noted he needed ‘to make a living’, and Jade said that her recovery coincided with separating from her partner and the need to support her two children. In such cases, participants appeared to be in a double-bind: they expressed shame or disappointment in themselves for not prioritising their health yet were required or needed to keep up with normative time.

Some participants found they could navigate work time by breaking up their workday and week, helping them to prioritise paid work. For example, Shay is self-employed and works a maximum of four hours a day, four days a week. Shay shared ‘that's kind of my limit […]. And then [I come home] have a nap or rest and just completely zone out because I can’t do anything else’ (Shay). However, Shay's ‘limit’ is the edge of exhaustion, just enough to keep up with demands of self-employment but forcing her to rest afterwards. For Alex, he was able to ask for and receive support in the workplace, enabling him to ‘set his own pace’ at work, without the pressure to increase his workload (Alex, #27). Workplace flexibility was necessary, but participants still felt the demands of capitalist production. Work time, therefore, was a constant compromise or modification of crip time, either by necessity for their own financial needs or through workplace pressure. Work time was a strain on participants, and they had to navigate the fine line between doing ‘just enough’ to earn a living, and the cost to their bodyminds (see Samuels & Freeman, 2021). Pacing time becomes an important strategy to meet their needs, which may include how they attempt to adhere – out of choice or not – to normative expectations.

Pacing Time

Pacing time involves scheduling life to include periods of rest and low-energy activities to mitigate or minimise symptom flare-ups. Pacing often involved participants using a cost-benefit analysis in thinking about their activities. They had to ask themselves if they had the capacity to do an activity, whether they genuinely wanted to do it, and whether the result would be ‘worth’ the possible occurrence or exacerbation of PIRS. This generally involved careful pre-planning and organising a schedule ahead of time. Willow said, ‘I really need to use a lot of strategies to get through the week and to plan […] how I’ll do things.’ Pacing time allowed participants who do not ‘keep up’ with normative time – and which makes them feel ‘out of sync’ – to manage or control time. Astrid, for example, spoke of the necessity of pacing:

I [try] to keep things manageable. But yeah, if something triggers a flare-up […] [it has a] cumulative, after a couple of days in a row where I’ve just packed too much in and really overdone it, then yeah, it can be weeks, like, up to two months, even, where I can see that [my] capacity is really reduced. (Astrid)

‘Packing too much in’ to a weekly or daily schedule was a concern for most participants. The fear of ‘doing too much’, as highlighted by Astrid, was to avoid PIRS flare-ups and returning to ‘waiting time’ and further uncertainty. As such, some participants described the importance of scheduled rest. Freddie said ‘I get so much, so so tired, like, during, like, midday, like in the afternoon, I’m exhausted. So I really need to rest’ (Freddie). Ellie noted:

There's just things I need to think about [now]. Pacing. Pacing, the things I do with rest. And thinking about what tools or strategies could I use if this increases, or this gets harder in terms of symptoms. (Ellie)

Similarly, Astrid said that following her TBI, her daily schedule became more complex to ensure she could rest and recover:

I’m constantly judging how much I’m doing and how, like how much it's going to flare up my symptoms, how loud it is, how bright the lights are, how things are going to accumulate over the day – over the week, because [I am making] this constant judgement call of what can I do, and how do I prevent these symptoms from flaring up? (Astrid)

Astrid's pacing time is purposeful. She assesses the present moment in anticipation of her future, with every decision carefully weighted. However, pacing cannot mitigate or prevent PIRS like chronic pain or fatigue, but it can provide a framework to organise rest and make decisions that may avoid or minimise pain (Sheppard, 2023). Kafer (2013, p. 39) suggests that for people with chronic pain, like Astrid, ‘the present moment must often be measured against the moment to come’, where conserving energy through pacing time embodies crip time. For example, Bryan said that after his interview, he would ‘take it easy. [because] I’m working tomorrow. So just resting the body [for] tomorrow.’ Jenny also emphasised that she knows how her body reacts when she is in a noisy environment for too long, which helps her re-prioritise to meet her wants and needs:

I’m not gonna be able to be [at the party] long […] I’ll be in bed for a couple of days afterwards, because it set, set, set [sic] my head off [migraine] and if I’ve got appointments that I need to go to […] they’ve got to come first. (Jenny)

Jenny's experience of migraine means she needs to prioritise appointments over social events. Time is not something that is passively experienced, but an active practice where, for people such as Jenny, they use pacing to achieve a desired end.

Pacing time can therefore involve slow time. For example, Alex shared that ‘going about my activities at a measured pace [was a good idea] given that I’m still feeling fatigued from two nights ago when I went to the concert’ (Alex, #105). For others, pacing was not planned, but a learning curve of understanding when their limits were breached. For example, Ruby said, ‘I’ve learned how to recognise when I’m going downhill, and just go and get quiet time.’ Through this process, Ruby is finding new rhythms that meet her embodied needs and ensure that she can also do what she needs and wants to.

However, pacing time was not always successful, with many participants noting the very real impacts TBI symptoms have on their everyday lives. Alex further shared that due to his severe fatigue, ‘just finding the energy to keep up the self-care plan is the challenge’ (Alex # 5). This indicates how TBI symptoms can be disruptive and unpredictable, which creates barriers to undertake consistent crip self-care (Sheppard, 2020).

Pacing time is an active process of doing crip time, but some participants described pacing time as greatly limiting. This is why, paradoxically, pacing time can be both liberating and confining. That is, pacing time can provide a positive, self-care-oriented approach after injury, but it can also cause frustration, grief and exhaustion, a common emotional consequence of inhibiting crip time due to living outside normative time (Awkward-Rich, 2023; Samuels & Freeman, 2021). As a result, some participants tested or sought to extend their window of tolerance and risk symptom flare-ups so they could live their lives more freely.

Isla noted that her symptoms can become too restrictive for her daily routine, so she ‘push[es] the symptoms a little bit. Otherwise, they get worse and worse.’ Shay also tests herself to ‘see how far I can push on the signs and symptoms before I start falling in a heap’ (Shay). Some of our participants wanted to intentionally ‘push’ their symptoms to do everyday tasks (keep up with normative time), or to feel they had more autonomy. As Ellie said:

Even if it makes my symptoms worse, I’m so sick of not living, of not doing risky things […] I’m going to do things that I know I’m going to have to pay for in terms of energy and rest for weeks afterwards. But it's meaningful to me. (Ellie)

Pacing time can, at times, look like self-harm because those intentionally ‘pushing’ beyond their limits can cause themselves future pain (Sheppard, 2020). In addition, not ‘pushing’ symptoms or ‘pushing through pain’ can be synonymous with ‘giving up’, mirroring an ableist narrative that equates pain with weakness (Sheppard, 2023). However, deliberately making decisions about one's own capacity is an expression of agency for people with TBIs (and disabilities more broadly), which should be respected. It also demonstrates the normality of taking risks and how risk-taking – however banal it may seem – brings joy. As Ellie emphasised, she wanted to pace herself but did so with awareness of the potential costs. Yet pacing time cannot guarantee stability, and managing PIRS can also be unpredictable.

Unpredictable Time

Throughout the interviews, participants described having to adjust to unpredictable time. Unpredictable time captures how crip time involves living with uncertainty. As mentioned previously, time can be allocated and defined by schedules, pacing and rest. However, these are difficult to adhere to, as every day can be different. For example, even with pacing time, Ellie still takes unplanned time off work. She said ‘I take most of Thursday off [work]. I don’t plan it most of the time, I end up just having to [leave] and sleep’ (Ellie), as she cannot work like she had assumed. Zayne shared:

Living with [persistent symptoms from mild TBI] is challenging. Some days you feel like you are completely better and like you are on top of the world and others you are unable to get out of bed, sleeping for 16+ hours at a time. It's a very frustrating feeling as you don’t know what the day will bring for you. (Zayne, diary entry #1)

Like Ellie and Zayne, other participants shared that PIRS are complex, dynamic and unpredictable. The effort of pacing time was void if PIRS flared up, making their routine as unpredictable as their symptoms. In addition, it was rare for only one PIRS to fluctuate as one symptom would exacerbate another, causing a chain reaction:

Once you set one thing off, it just sets the next thing off. And the next thing after the next […] the headache sets off migraine, which affects my balance so much, which affects my speech even more. (Jade)

Even after several years with PIRS and utilising self-care strategies to reduce or minimise ‘flare-ups’ where possible, this may not make a difference. Alex said:

I had a million things to do [today] but did almost nothing, even got Uber eats for dinner so I didn’t have to cook. I have to get over feeling guilty for not going to the gym, doing the shopping, cooking dinner, walking the dogs etc. […] I’m not being lazy. Fatigue is most difficult part of my TBI to manage as I can’t tell when it's going to hit. (Alex #65)

Throughout Alex's diary entry is the sense of injustice at failing to maintain a (normative) lifestyle. Tied to his annoyance are feelings of failure to perform as a ‘normal person’ (Alex). His frustrations are towards himself, as he notes the difficulties of living in unpredictable time while the world is bound by normative time and ableist norms, which place pressures on his everyday routine (see Berlant, 2007). As Samuels and Freeman (2021) emphasised, crip time can be frustrating for people whose bodyminds grapple with the expectations of normative time when their bodies demand otherwise.

At the time of her interview, Willow had PIRS for the two years and shared same the sentiment of unpredictability, stating that her symptoms still surprise her: ‘sometimes I’ll say to my husband, ah, yeah, “I’ve been think[ing] it's a really good day [sic]. I’ve been able to do this and that” – and then it’ll [PIRS] just hit me like a wave and I’ll go oh!’ (Willow). ‘Hitting her like a wave’ provokes an image of how her TBI symptoms manifest and symbolises how they may fluctuate and come seemingly out of nowhere. For participants like Alex and Willow this means that pacing time does not avoid the unpredictability of PIRS nor relieve their symptoms. This can cause disappointment and frustration, as they cannot trust, control, or fully depend on their bodyminds to function as they desire.

Participants are stuck between ‘keeping up’ with the speed and demands of modern life and trying to implement the crip time needed for living with PIRS. The acceptance of unpredictable time takes time. Ellie said:

I think the severe fatigue is something that has just become my reality. The constant head pain/pressure that is there from the moment I get out of bed is just part of my life. With the headaches that then increase or seemly random/sudden pains in my head at different points in the day – of course this feels surprising but again now is within my sense of normality. (Ellie, diary #1)

Ellie's chronic pain and fatigue have become a part of her selfhood, where living in crip time has involved learning to embrace unpredictable time and this redefines her normality.

Discussion

By drawing on crip time, we demonstrate how living with PIRS after TBI is nuanced and complex, with multiple paradoxical and shifting temporalities. Our article therefore provides insights into the significance of (crip) time for people with TBI(s) and PIRS which, as we noted earlier, has not been adequately explored previously. This may be due in part to the traditional biomedical framing of TBI as an acute condition with ‘finite recovery’, which has significantly shifted over the last decade (partially influenced by patient and family reports) to recognise ‘TBI as a chronic condition that can affect multiple body systems’ (Dams-O’Connor et al., 2023, p. 517). This limitation is also reflected in TBI support often being restricted to acute and short-term care, which fails to recognise and support people with TBI symptoms over the long term (Dams-O’Connor et al., 2023). Our article contributes to the recognition of the chronicity of TBI symptoms and how they impact the daily lives of those who must live with them. From the participants' experiences as shared with us, the significant and ongoing impacts of TBI symptoms are evident. The positive and negative experiences of crip time are fundamental to their everyday experiences of living with TBI and PIRS.

In addition, our article adds to understandings of crip time as a concept by developing new ways it can be applied to understanding lived experiences of brain injuries, disability and chronic illness, namely through waiting time, work time, pacing time and unpredictable time. These each illustrate the different ways in which crip time can operate across different domains of life, and which intersect for people with TBI. In addition, crip time can help in a radical rethinking of the organisation and structure of time. As shown through our participants' experiences, the heterogeneity of crip time opens new possibilities and potentials, while facing ableist challenges and barriers. For people with TBIs and disability more broadly, a societal embracing of crip time can challenge ableist norms and thus create understandings that can lead to temporal justice through more inclusive and equitable approaches, which could radically reform the ever-present ableist functions and structures in neoliberal, capitalist societies.

Furthermore, our article contributes towards the sociology of disability by illustrating how disability is a social category that can be used to oppress people with disabilities while also recognising the ‘impairment effects’ of TBI, namely ‘the direct or immediate impact that “being impaired” can and does have in the daily lives of disabled people’ (Thomas, 2007, p. 135, original emphasis). We achieve this by revealing how the embeddedness of the social construction of time creates social exclusion and oppression that reinforces ableism and which affects disabled and non-disabled people, while not ignoring the impacts TBI can have on individual bodyminds. Our approach also illustrates how health and medical sociology – which often frames people with disabilities and chronic illness as ‘impaired’ and ‘suffering’ healthcare ‘users’ who are socially deviant and dependent on others (Thomas, 2007) – can integrate theoretical frameworks from the sociology of disability to recognise disability and chronic illness as embedded in the socio-cultural context and embodied.

However, the possibilities of temporal justice that crip time holds may be more viable for some than others. For the Indigenous participants in this study, crip time may not fully capture their temporal (and lifeworld) experiences, including that of Indigenous time (see note 1). Furthermore, many Indigenous languages in Australia do not have an equivalent of the word ‘disability’, which Indigenous communities often accept as part of human diversity (though conditions that affect a person's behaviour or mental health – such as TBI – can attract stigma) (Puszka et al., 2022; Wills & Fitts, 2024). Thus, as a concept, crip time may not be adequate. Nevertheless, three out of five Indigenous participants identified as disabled, with Amy sharing that TBI is a ‘disability that does not go away’, and all Indigenous participants extensively discussing the impacts of TBI in their everyday lives. Yet it must be recognised that Indigenous Australians experience dual subjectivities as Indigenous and colonised people that inform their lifeworlds (Walter, 2022) and are subject to distinctive structural inequalities within a settler-colonial context (Puszka et al., 2022; Walter, 2022). Further exploration of the intersectionality of time, disability and Indigeneity in settler-colonial contexts would contribute towards a decentring and decolonisation of sociology and disability studies, and reveal intersectional inequalities (for example, racism and ableism, as alluded to in relation to Shay's experiences of waiting time), and make visible Indigenous values and perspectives (Walter, 2022).

Conclusion

In our study, the participants experienced crip temporalities of waiting time, work time and pacing time to carefully (re)negotiate their adherence to normative time, which may also involve unpredictable time. Crip time meant navigating feelings of frustration, loss and shame, while also positively reframing their life to centralise their needs, as someone living with TBI. The power of crip time meant they found opportunities to live life differently, more slowly, to prioritise their needs and desires, to exercise self-compassion, and develop a new perspective on life. Moving in/through crip time, and understanding or embracing crip time, offered the participants the ability to accept their individual desires and capacity to re-shape their lives to fit their needs, rather than continue to be entirely defined by ‘regimented, economic and cultural imperatives’ (Samuels in Kafer, 2013, p. 40). As such, crip time can be ‘beautiful and forgiving’ through embracing its ebb and flow as well as being flexible for accommodating crip bodyminds (Samuels, 2017). Yet crip time can be ‘challenging’ given the difficulties of living in and through crip bodyminds (Samuels, 2017) in an ableist society. Living in crip time in a neoliberal capitalist framework can create internalised shame due to the individual's perceived inability to not ‘do’ or be ‘enough’, no matter what strategies they utilise (Kafer, 2013; Sheppard, 2023), with participants identifying barriers to living in/through normative time in ways that they had done previously. Yet the expectation of people to overcome chronic illnesses, return to work and ‘normality’ (Sheppard, 2023) fails to embrace or understand crip time, where bodyminds work differently with no choice or out of necessity. For those who acknowledged their shifting temporalities, this made a profound impact on their sense of self and became an added dimension to how and why they moved in/through non-normative, linear time.

Crip time disrupts rigid, normative time patterns that exploit and exhaust bodyminds, and offers alternative ways of being and doing. This is achieved by exposing what is ‘normal’ and who gets to decide this. In reimagining what it means to be in and move through time, crip time unlocks transformative potentials for decoupling time from normative constraints, including how it is structured under neoliberal capitalism, which can benefit disabled and non-disabled bodyminds alike. That is, disabled people embracing crip time are leading the way in repositioning and reframing time, where time becomes responsive to bodyminds rather than processes and systems that disable everyone. Through such radical reconceptualisation, disabled and non-disabled bodyminds alike have much to gain through crip time.