Creating on Crip time
Keeping up with writing, or any form of creativity, can be really challenging when you live with chronic illness. For me, fatigue and cognitive dysfunction are common barriers to doing what I’d like to or planned to do on any given day. But adapting and learning to live well with these symptoms also means I can let them point me in a new direction. A way that is less perfectionist and excellence focused; less consistency dominated; and operates on disabled/Crip timelines, instead. Simply put: it’s about access!
Adjusting to living with acquired illness and disability means adjusting how I view my needs and limits. And also how I define success. Ever heard the saying “Everyone has the same 24 hours?” – I completely disagree. The ways we divide up time to orient around a late capitalist work schedule do not work for me whatsoever. (It never did, actually. But that’s a rabbit hole for another time.) My body could not care less about the constructed idea of 24 hours. Now, I know there is research on sleep-wake cycles and there are many ways our bodies and nature follow rhythms, but I am trying to point out the ridiculous idea that humans are the same every day. That we can expect to be the same, be capable of the same, be “productive” in the same ways, behave the same, every single day for the duration of our lives. Have you ever stopped to question this before?! Do you see the ways this expectation of “roboticism” and the independence myth are built into our workplaces, educational, and healthcare institutions? Our governing bodies? (My good friend, Kaia Arrow, published a paper in 2021 on this topic: Pandemic Possibilities in Crip Time: Disrupting Social Work Field Education ) The way we construct and operate our lives and expectations of ourselves and others on these unrealistic timelines is so wild when you stop and question for a minute. Which is a reason why questioning is so harshly punished, too. We literally ingrain in ourselves and our children that questioning is disrespectful and will get you ostracized. Meanwhile, questioning is leads to liberation… Yet another rabbit hole for another time.
Today is a great example of bucking the trends of inaccessible ideals of excellence, perfectionism, and time-limited creativity. I planned to do some writing, but when I opened my computer to do so, I found myself far more fatigued than I realized. I immediately knew I had to let go of the usual ideas of writing with structure and rhythm and fluidity – ways of writing that are just not accessible to me today. Instead, I am letting myself spend a few minutes of pulling a couple threads forward and putting them down, without worrying too much about it “making sense”. And also because if I am fatigued like this, I need to be resting, anyway!
This cognitive fatigue and dysfunction is colloquially called “brain fog” because it truly does feel like trying to think through a dense fog in your head. I also tend to picture myself slugging through waist deep mud, trying to hold onto an idea or a thought and bring it forward to the front of my mind. That’s what trying to think and communicate with cognitive fatigue and dysfunction can be like. It is one cue to stop, drop, and rest. So far, I’ve dropped – aka slid further and further down on the couch into an awkward supine rather than long sitting. I’d better wrap this up and get to the stopping and resting.
The way disabled folks have to adapt and literally do time differently is just one small example of why our world would be better off if disabled people were actually valued, listened to, and cared for. Because the pace this world is going at is good for almost no one: non-/pre-disabled and disabled, both. And people with intersecting marginalized identities have known that for ages. Folks like queer, racialized, disabled people. We are in a time of unrest and uprising and I know even more viscerally now than before I was living with chronic illnesses: the marginalized hold the wisdom and the liberative ways that we desperately need in this world. Adjusting our expectations for ourselves and eachother is one small way we can usher new ways into this world. We all deserve to have our needs recognized and met. Sometimes, that can start with us learning how to tune in to our screaming bodies, and stop forcing ourselves into ways of being and timelines that are not working, and that are hurting us. The social supports are not there and so it’s not easy or possible for some people, but if there is one thing you can do today to simply stop and listen to your body without “doing”, perhaps it’s one small step in a direction of making this world better for all of us. Because many small steps taken together can cause ripples, and even waves, of change that most of us are desperate for whether we realize or admit it, or not.
Happy resting!