Chronically Ill Kat

Sometimes non-disabled people will ask me, ‘what do you do all day?’
If I don’t work, surely I have to do something. And I always find this question difficult to answer because saying “not much” is not true, even though, often, I haven’t ‘achieved’ anything specific. Some days, all I do is lie in bed feeling ill; other days, I might write two or three blog posts in one sitting. But, because of my chronic illness, time works differently for me. I live on ‘crip time’.

What is crip time?

Crip time is about understanding that time works differently for disabled people. It is a more flexible, re-imagining of how time works: when things should happen, how long they should happen for, based on the specific workings of our disabled bodies.

As Professor Alison Kafer says, crip time means that, ‘Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.’

Crip time is learning to understand, obey and deal with the intricacies of our bodies, our mental health and our interactions with society, based not upon what is expected of us, but based upon what our disabled bodies want and need. The concept of crip time about is embracing that.

Crip time is timey wimey

‘Crip time is flex time not just expanded but exploded’ (Kafer). I live in a body functioning at the level of someone who is 70. That means I am dealing with the same level of loss. I am dealing with the same level of grief. But I am also living as a young person, surrounded by other young people, expected to do young people things, and expecting myself to do young people things.

I often jokingly call my life ‘granny life’, and when I was travelling in Malaysia, the joke was that we were grannies on tour or Nenek mengembara. But, in reality, I am not. I may have a similar lifestyle to the granny life, but I have not experienced the years of good health that many elderly people have before the granny times. So I don’t fit in any standard age category; my body spans many ages.

I do not fit into the standard linear framework of time: I don’t know if I will ever get better; I don’t know if I will stay this sick; I don’t know if my condition will progress. In my life I cannot plan in the same way that non-disabled people can plan their lives. When I tried to do that, I was constantly being let down. I don’t know if, by the time my application has processed, I will be well enough to study a Masters programme next year; I don’t know if, in five years’ time, I will be healthy enough to live in my fourth floor apartment. My time is crip time. There are no linear future plans.

Crip time is unpredictable

On a day-to-day basis, my disability will change completely. Yesterday, I spent all day in bed with very high levels of pain. Today, for no explicable reason, I have managed to get up, journal, cook lunch, research and write this blog post. My illness is unpredictable and does not follow a routine, or the standard ideas of cause and consequence. I have had huge crashes and then periods of much better health that have been seemingly random.

This makes it very hard to fit into a world where crip time is not the norm. To get a job requires committing to a regular set of hours that are planned beforehand. My body requires planning to be flexible and last minute. Even as a freelancer, I would be expected to reply to emails in a timely manner, which as a sick person I cannot guarantee.

Socialising with people who live in non-disabled time relies on them understanding that I live in crip time now. I often have to cancel on the day, or postpone and rearrange times to hang out with friends. Compared with normal standards I am flaky. But by acknowledging and respecting crip time, I can appreciate that my body is not made for non-disabled time.

The concept of crip time, in this sense, has really helped me feel less guilt for my flakiness. Cancelling is not a result of me being a bad friend, it is a result of me listening to my body and not making myself sicker.

Crip time doesn’t care about productivity

As a non-disabled person I was hyper productive. I multitasked my way through high-level kayaking, ballet lessons twice a week, flute, piano and hockey classes, whilst maintaining high grades at school, participating in debating club and being head girl. So becoming chronically ill was quite a shock to the system. Suddenly, a very productive day is one where I cook for myself, journal, and maybe do one other thing. In a productive week, I manage to write one blog post and make a couple of instagram posts. That doesn’t mean I am lazy.

Living on crip time means letting go of ideas about productivity. Productivity is no longer a measure of worth. It’s about learning that rest time, time spent on wellness, meditation, time lying on my accupressure mat are all productive. Being sick takes time and energy in a way that people not living on crip time often don’t realise. Lots of everyday ‘easy’ activities like showering, cooking, even getting out of bed, require extra energy and time as a disabled person.

When I add up the usable hours that I have in a day to write or work on something where I need brain power, it adds up to a very small amount of time. Yes, I might be awake for several hours of the day, but I have an average of two hours a day (often less… sometimes more) where I can actually sit down and focus on working on something. Compared with non-disabled people, this is an outrageously short amount of time, and this realisation has helped me to compare myself less often with non-disabled people. Just because I don’t work doesn’t mean I have more time; being sick occupies a great deal of time. And crip time, as a concept, acknowledges this.

Crip time is grief

Because of all the aforementioned things, living on crip time comes with a lot of grief: grief that what was is over, grief for what I could have been, and grief for what I am not.

Often, I want to live on the same time scale as my friends. I want to be in my early 20s, making reckless decisions and living it up, but my 70 year old body doesn’t let me. I want to go through the same life phases as my friends, get an adult job, have adult money, live an adult life. But that is incompatible with living on crip time.

I don’t want to feel jealous of the people who are 70 and only just losing their health, who have already led a whole healthy life. Instead I want to choose to have tea drinking, card game playing ‘granny’ days, not have them forced upon me by my body.

I want to be able to achieve lots of things quickly. For this I want to be able to graft and work overtime for the things I want. I don’t want to be the odd one out, the weird one, constantly having to bend non-crip time rules, needing extra time, being flaky and being the exception. But I know, in the end, I simply can’t.

I feel that the philosophy behind crip time could really help us all. Understanding that time means different things for everyone, respecting and embracing that, what a difference it would make to so many people! For a beautiful piece about Crip Time check out this!