Literally, not literally

“We tell ourselves stories in order to live.” Joan Didion

“Freud wanted us to enter into a common human unhappiness, into a sober sense of what’s possible. Sometimes I want to kick him. Who has the courage for that?” —Jamieson Webster

I have been reading this amazing book, Jonathan Sterne’s Diminished Faculties. In general, the book circles around the distinctions and indifferences between impairment, disability and illness. (It does many other things and is full of insights and interesting stuff). An interesting aspect of this book is that it suggests that “impairment” might be the physical substrate for disability, the biological core of a thing that becomes a limitation through social and signifying practices. (Sterne emphasizes the “might be” —as would I —here.) In a sense, impairment is to disability what sex is to gender. Sort of. (I need a good parenthetical comment here that puts that comment under erasure.) However, these terms defy our desire to draw circles around them, to free “impairment” from the cultural freight that comes along with limitation felt in our collective, built spaces, to free the random arrival of biological dysfunction from the accretion of micro-meanings that land in the ways we think and make the world.

Impairment implies that one doesn’t have full control, composure, hang-togetherness, consistency, ability, fluency, with respect to relevant faculties, processes, conditions in one’s body. However, this bodily being-out-of-sync thrives as an idea against notions about in-sync-ness that are, among other things, idealizing and — depending on where one sits — pretty arbitrary. The example oft-cited here is farsightedness — at some point we decided that wearing corrective lenses or contacts for this condition could be considered okay, unremarkable. Here is where the biological basis — the specific impairment — becomes about choices we make together about what “normal” functioning looks like and whether and what meanings that has.

Now, people who know me know that I anxiously await the existential analytic of impaired Dasein as much as the next person; still, I want to highlight another feature of impairment. I am talking about something I would cautiously call more “literal.” Spinocerebellar ataxia lives as an impairment of balance, coordination, gait, speech, and swallowing (among other things) in my body. It is the result of a genetically acquired process that is also impaired: my genetics come with a hitch: they give instructions to my body to produce too much of a chemical called ataxin-3, and that this results in the degeneration of my cerebellum, the motor of processes of balance, coordination, etc. One way I experience this is that all of those “little muscles” — you know, the ones that they tell you to work on in pilates class — don’t work as planned.

As an example of this, I would simply offer this. I found last week as I was sitting at my desk, that my pants were, well, wet. As if I had pissed myself — which is apparently what happened. More disconcerting than the fact of having lost for the time being my bladder control is that I didn’t get any of the signals that one might normally get that going to the bathroom was needed. As someone who has what is known as “urgent bladder syndrome,” I am used to having time constraints on my bathroom trips — as in, the time between when I begin to feel like I might have to go and going is pretty small — some people can have as much as an hour; I sometimes have maybe 5 minutes. But I was not ready for that — no sensations or signals at all. And back to “normality” in terms of bladder control the next day. Of course, I understand that normality is a fiction I tell myself about myself, but feeling it is also a relief.

Another example, particularly salient right now, is the feeling of balance — and its absence. About 8 weeks ago, about a week after a snowstorm, we took the dog for a walk — the streets were dry and free of snow. The only place on our walk that wasn’t cleared of snow and ice was our driveway. Long story short, at the end of our walk, I slipped on ice and fractured my leg in two places. I have been lucky — so far, my surgery and recovery has not ramified as changed disability status, at least with respect to work. But it has also brought to the fore the ways that impairment operates. Everything that I can still do takes about 40% more effort and at least 35% more time. Which shows up a lot in the effort and time it takes to get to the bathroom. And it has de-familiarized a bunch of other quotidian things in my life — from my movement around the kitchen to the use of Pilates muscles on my little knee scooter when I stand up from the couch.

In her groundbreaking work, Illness as Metaphor, Susan Sontag makes the case that the linguistic hoops we jump through to talk about illness do a lot to mobilize us in certain ways but not others, to prepare our bodies and psyches for the challenge of illness. A famous example is the way we used (in the 70s and 80s) to talk about cancer — about winning the war on cancer, on battling cancer, about cancer as the invader, the foreign body within the body, etc. In a sense, Sontag was at war with the war on cancer, looking for different ways to articulate the connections, disjunctions, conversations and silences that happen in between body and talk about the body. One of the things I hate (yes, not fashionable, but hate) about ataxia is how literal it is — however much incontinence is an existential condition ripe for exploring — a condition ripe for stories about resilience, or resolve, or sympathetic embarrassment, or toughness (or frustration, or giving up) — it is also just having wet pants in the middle of the day.