“Crip Time” (Samuels, 2017) describes how time can operate as a site of loss and of alienation, but also of liberation for disabled people. The concept resonates extremely strongly with me – as the combination of my physical impairments along with my seesawing tendencies towards inattentiveness and hyper-focus mean that I have always struggled to conform to normative social constructions of time – particularly regarding the notion of “work-life balance”. Here, I want to outline what I experience as one of the cruellest implications of my disabled relationship with time – the loss (theft) of “free time” – and of joy and pleasure.
My first memories of experiencing the inequality of “free time” was in junior school. It was common for my teachers to arrange the day so that we would be expected to do “work” (English, Maths etc) in the morning, and “fun” things (creative work, topic-based projects etc) in the afternoon. This sounds great, except for the fact that you had to finish your “work” before you were allowed to move onto the “fun” stuff – even if this meant you were sitting there “working” most of the afternoon, while others around you had “fun”. The feeling of being punished for working too slowly was exacerbated by the fact that being made to “work” during “fun” time was often required as an explicit punishment for others who had deliberately misbehaved earlier in the day. This set a pattern for my life that persists to this day – in the sense that I actually perceive many tasks associated with “work” to be “fun” (particularly anything involving writing), and find social divisions between “work” and “life” (and the requirement to “balance” these) to be rather arbitrary. But also in the sense that I expect to take longer than others to fulfil the required amount of “work” before I can move on to “fun” – and feel crushing guilt as and when I try to relax.
Another theft of time I have experienced due to my disabilities seems on the surface to be benign – even compassionate in its motivation, but it can be crushing in its impact on your self-esteem. When I got to grammar school, and was approaching GCSEs, it became clear that with the support and equipment to which I had access at the time, the time it took me to complete the workload required for all my courses, along with the toll this took on my body meant that it was unsustainable (to illustrate – I was allowed unlimited extra time by the exam boards for my GCSEs – my final exam, by which point I was quite beyond exhaustion, took me 7.5 hours). One solution offered was that I should reduce the number of courses I took (and therefore, obviously, the number of qualifications open to me) in order to give me more time to work on “important” subjects. I really didn’t want to have to do this, because it would have meant I got fewer qualifications than my peers (in the extremely competitive, pressurised school environment that was my “world” at that point), and also that I would have to drop subjects at which I excelled – and that brought me huge amounts of pleasure and respite from the painful and exhausting experience that epitomised the rest of my school life, in order to spend more time on things that confused and hurt me – simply because those things were deemed “important” by others. Fortunately, we managed to reject that suggested option for my education, but this meant that I had stuff to prove, and I developed the feeling that I couldn’t allow myself to be seen to struggle too much, as this would lead to me losing out on things I enjoyed, and that meant a lot to me.
Interestingly, extra time to do “work” was also perceived by my peers as an “advantage”. I was constantly verbally abused throughout my time at school, because other students believed I had an unfair advantage as I got to spend longer on exams. They had clearly never spent 7.5 hours deliberately doing something that caused themselves intense physical pain. Doing so is perverse, but it’s a constant feature of my daily life.
Related to this was a battle we had to fight for me to be able to do one of the A-Level courses I wanted (and at which I had excelled for GCSE) because the teacher was concerned I wouldn’t cope with the physical demands of the course (i.e. the amount of writing required). I remember being devastated when I heard that this had been suggested – not least as the teacher who suggested it (my French teacher) had always talked and written about what a “gifted” and “promising” linguist I was, and how I was a “joy to teach” (well, it was my “joy” to learn too). I will always be grateful to my beloved German teacher for fighting my corner, and saying there was no way that I should be denied the opportunity to take French. I did French, German, English (Language) and Music A-Levels, and they were some of the happiest days of my academic life. It frightens me how easily I might have missed out on those experiences.
And then, as an adult, I entered the “world of work”, with the expectation that I should manage my own “work-life balance” around the (to me, completely arbitrary) notion of a 37.5 hour working week. And I ran into problems – because everything in my experience of “work” (loosely defined) to this point had confirmed for me that work takes me longer than other people – and that it is expected to make me hurt almost beyond endurance, and exhausted to the point of spontaneously falling asleep in public. So if my peers spent 2 hours on an exam that took me 7.5, and a working week for those same peers is 37.5 hours – well, you do the Maths. And then people are surprised when I can’t “switch off” – when the guilt induced by “leisure” time makes it not worth attempting, and why I feel like a constant failure.
And because my sense of what is “difficult” and what is “easy” and what constitutes “work” and what constitutes “pleasure” are so at odds with much of the rest of society, I can end up losing out when people try to be helpful too. It could be that my (paid) work requires me to make phone calls, or write emails, or do any of the other tasks that my autistic brain finds bewildering, exhausting, and painful – and this could be on a day when my unruly body is already burning and stinging and swimming in treacle. A “normal” person would be curled up in bed being looked after. But it isn’t so easy to play the “sick role” when this is your default setting. Society runs out of patience very quickly. The thing that might help me could be writing an essay, or working with my research data – my ability to hyper-focus on a topic I find interesting and engaging is a particularly useful analgesic. It would actually be helpful to my “recovery” to do a task that others would regard as “work” – and it’s good for my “self-esteem” too. But if I try to ask for help with the specific things I can’t do (the phone calls etc) then I know from experience that people with power over me will try to “help” by removing the “burden” of the things I enjoy and do well – so I have to struggle through the impossible things, in order to be allowed to do the good things. And I also know I run the risk of being found guilty of not playing the “sick role” properly – like the person with clinical depression who would benefit from going to the pub with friends, but would also face disciplinary action at work if they were seen out of their house while “off sick”. Being sick gives others the right to control how you spend your time – and being disabled makes this a default setting. And it all just emphasises to me that I “don’t fit” – that I’m faulty.
The liberatory struggle at the centre of our disability politics needs to encompass a fight for our freedom to experience joy, and pleasure, and rest – to dream, and to hope, because these experiences are part of what it means to live a fully human life. If all we gain from our struggles is the right for individuals with impairments of body and mind to spend their life in a constant loop of work, illness, and exhaustion – running to keep up with a pace at which others walk,, then we really aren’t aiming high enough.