Yesterday’s seizures: first, like being sucked under the surf and listening to everything from afar. But being totally unprepared for the water and not realising I’m there until I’m in there. Then being dumped in the massive wave and taken for a roll, a washing machine we used to call it when I was a kid. Except there was none of the joy of emerging from the water, triumphant. With the seizures, ‘I’ am sucked out and everything around me is distanced and too close all at once. A scratching string, muscles twitch and spasm. One moment and suddenly, nothing there; the next a crowded room of extreme agitation and emotion. Crawling red ants. In its wake, I want to run away but my body is curling over and limp. I feel like I can’t see or talk straight and then I am minddumped again this time in a black pond of despair that won’t lift for days.
I have forgotten about this blog a little bit this year because I’ve become so immersed in writing and surviving as the deadline for submitting inches closer. In contrast to my earlier writing, which was more exploratory and had a sense of discovery about it, my focus narrows while the explanations deepen and (hopefully) connect with other linguistic and musical capillaries. The creative hunt isn’t completely over though because I’ve been discovering figures in artwork, history and/or popular culture that help stitch the incongruities in a chapter or even the thesis together. This surprises me. That these kind of insights and opportunities happen late in the process and can have a significant structural role when I stumble upon them in a happenstance way. I am learning to trust myself again because even a thesis can have imaginative and poetic escape hatches. But not too many — it’s principally about logic and ordering, two things I struggle with, two of several qualities of measure and assessment at many levels of education.
In a humanities thesis, knowledge is pursued and proven through argument and sequence. This is why it’s particularly challenging for me to find continuity with research and writing — I have to write everything down because I can’t keep a track of my work; I have to lay down the crumbs to find my way back. It also takes me longer to process information if I’m listening to, say, a panel and I’ve had a run of seizures that morning. Sometimes it’s a struggle to talk in full sentences, let alone perform as a budding ‘expert’ in my field. I am more fluent in writing than talking, a combination of the conditions and the multiple medications that slow my cognition. One medico told me that for me, doing a PhD is equivalent to ‘normal’ people taking a bunch of xanax and trying with all their effort to stay alert through an exam they hadn’t prepared for. My neurological system, my body and my mind are straining under stress to keep up. People will often then say to me, well what’s normal anyway, don’t worry about it, and it’s true there is a range of human experience. I know how a ‘normal’ day feels to me, I feel calm like I am sailing or even euphoric, but when you have twenty seizures a month where the symptoms are often varying in disruptive intensity and type, normal is vestigial. I’ve had epilepsy since I was nine and grand mal seizures pretty much wrecked my adolescent years but these seizures, which appeared six years ago, are like learning to function with mental illness.
Crip has been reclaimed by disability activists and scholars as a term in much the same way queer was, although it has so far been used in north America, mainly for physical disability*. A recent conference titled ‘cripistemologies’ re-examined the knowledge produced and meanings of disability/ability, debility/capacity, in relation to women’s bodies in global labour contexts, to mental health, to social relations and health systems. For all of us, the relationship between debility and capacity connects us to how we become who we are in the bodies we inhabit in places we share with others as we grow older. We live with ease or with day to day struggle, we move or migrate to feel safe, we keep working at the expense of our bodies or minds. Debility speaks of the body-minds that get left behind, the ones who need to access social security but who cannot make themselves understood. Access is about finding ways to read the rabbit holes in the Australian social security system, knowing how to answer questions, as well as the more concrete aspects that make buildings and architecture more hospitable and accessible. Capacity is doing one’s best and feeling the power to act with others and the world**.
Reflecting on a global scale momentarily, in this paragraph I make a gesture to the many unnamed bodies who tire and become sick due to inadequate public health care because their lives, their bodies do not matter. In this paragraph, and it is a superficial gesture to be sure, I highlight how we continue to make demands on an invisible labour force who are making the electronics, the silicon chips, the cameras, the computers, the recording gear, our clothes. Bodies bent, fingers working over the parts, hours, days, years — as a result of this intense labour these bodies become disabled, suffering from a changed posture, long-term pain, accidents, and here disability becomes the new norm in entire populations, as Jasbir Puar insists. In this paragraph, I acknowledge that being linguistically diverse in a culture dominated by assumptions about sense-making in English is disadvantageous and represents struggles around race and culture, where discrimination occurs without thought and where difficulties arise in applying for work, while on the job, on the sports field and in education. In this paragraph being a refugee is a crime (& that is certainly not my struggle).
In this paragraph, I am thinking about what I need to do to sustain an existence so I can engage with others in the global contexts, working toward change. I need an encounter with epilepsy, which I have been avoiding, in semi-public. I like this take: Merri Lisa Johnson seeks to redefine ‘able’ — it is not that she is unable — it is that she is unwilling. She made a decision she didn’t want to travel to see family and friends, or for guest lecturing positions because it results in painful spasms and mobility issues. She says, “It is a refusal to insist—a refusal to act in accordance with the system of compulsory able-bodiedness — that requires individuals to mask, suppress, and disregard discomfort in the process of determining what is possible, of what we are capable”. I regularly mask and suppress the physical discomfit and psychic pain in the experience of seizures. I censor myself a lot, or I don’t and where I don’t it doesn’t end well. I am tired of masking my demon-epilepsy. It isn’t just a physical thing, it’s a dark, dark being dropped into a trapdoor of ‘shit where did my existence just go?’ thing. It’s agitation, confusion. It’s irritability, it’s having my detailed mind suddenly surrounded by an ocean of snapping dragons or an ocean of nothing. There is a continual negotiation between debility, in the sense of being worn out from chronic illness and its attendant medical and administrative needs, and capacity, where I feel able and excited to act in the world; and aligning this with social expectations is difficult.
Taking her inspiration from Sara Ahmed, Johnson draws on the ‘feminist killjoy’ to think about wilfulness, “if a cruelly optimistic culture insists that we fake it till we make it, the crip killjoy refuses to play along”. ‘Killjoy’ here is a mismatch with the dominant cultural scripts that say either implicitly or explicitly (in some cases) ‘just get on with it’ ‘be happy’ ‘look what he can do with a bad heart..’ ‘don’t let epilepsy get you down, be positive!’ ‘you need to manage your epilepsy’ ‘stop whinging’ ‘everyone gets a bit vague’ ‘you’re too negative, get over it’. In spheres like the arts and academia, spheres of achievement (and don’t anyone tell me about how prolific disability is ‘in’ the arts, I know, I know.. but there is an unevenness to this and there are power relations at work and it is about who pulls which strings), being able to verbally articulate and make sense is a taken for granted norm. Putting on a confident front is also necessary if one is to succeed in their arts networking. Positivity is seen as a desirable attribute in both sectors that are plagued by their own difficulties and mini-politics, so I believe there is an urging to ‘look on the bright side’; in a kind of survival of the fittest in an individualist, self-entrepreneurial way.
Being confident and looking on the bright side allow you to get on with work and attract others who are confident and happy. However, “(y)ou cannot always close the gap between how you do feel and how you should feel”, says Ahmed. Especially if the circumstances we are growing in are adverse or irregular. And that’s when we may be labelled ‘killjoys’ — a feminist killjoy or a crip killjoy — for not sucking it up getting on with things. To be a killjoy is to be wilful; yet an opportunity presents itself if we choose to become wilful pebbles in shoes: “(b)ehind the sharpness of this ‘cannot’ is a world of possibility” and this world is a potent, living mess, crying for ready and reluctant participants. Instead of trying too hard to cover this gap, smooth the way for verbal discourse, instead of straining to access pockets in the arts and music world and not being able to get there or feeling confused when I do or covering up the seizures I have upon arrival (because of light flickering through trees on train), instead of feeling like I’ve done something wrong by being locked out of doing volunteer work because I have too many seizures and banned from an opportunity to visit a youth unit in a prison because of the likelihood I would’ve place the whole joint in lock down, that I was the security risk, I might stand my ground and talk about how unfun the realities of living with epilepsy are. And listen for whether there is anyone or any other contrasting tones ringing in the vicinity>>
*Britain’s history with disability activism is quite different and grounded in socialist struggles and their disability conversations continue to be informed by this (still a good thing, despite the history of sexism, which feminist disability activists and scholars fiercely challenged).
**The dark side to capacity is in the term’s maximum inflection. How far can you go, how much can you make/produce, how hard can you work? Who pushes and who profits? What is behind this capacity for maximum ability?