On Being A Precedent

It was in January last year that Scott Morrison first used the phrase new normal. In that particular instance he was referring to the deployment of Defence personnel and resources in response to the devastating bushfires that were raging across the country at the time (and no, he didn’t mention climate change as the larger, more pressing new normal facing our whole world). It’s a strange and infuriating usage, even taken without the context of everything that happened next, for the way it insists that we accept as normal a way of dealing with a consequence, without also accepting its cause or any steps that we might take to mitigate it. But it’s a usage that was rapidly forgotten – by late March, with the pandemic in full swing, it seemed mandatory to include the words new normal in any headline, just as it was to use in these uncertain times in the first line of every email. The phrase was everywhere all of a sudden, a chorus. Between March and June, by some estimates, media use of the phrase new normal increased by 759 per cent.

Every time I hear the words new normal I feel a recoil, swift and small and deep within my belly. I hate how normal we find the idea of normal, how many other narratives and experiences and people it excludes and elides and diminishes. I hate how often it’s assumed that normal is something we only ever choose not to be, rather than something that rejects us regardless of whether or not (and consciously or not) we try to mould ourselves to fit. And I hated, at the beginning of the pandemic, how each time I heard the phrase the only thing that I could think was this:

For me, new normal is old news.

It was close to a full decade ago when someone first said the words new normal to me. They were said by the dietitian who ran the first hospital programme I ever attended, towards the end one of the many frustrating conversations I’d tried to have there with her – her main tactic for dealing with any kind of questioning or dissent was to pretend it wasn’t happening at all. It’s just not normal, I’d eventually spluttered, trying to explain how difficult I was finding keeping to all of the elaborate and exacting rules of my meal plan. This is your new normal, she’d very calmly returned, and insisted that as such, it was a thing that I had to get used to.

In hindsight, there’s something a bit spurious in the way the dietitian said this – the new normal she was suggesting, those pre-planned and perfectly-timed set portions and specific combinations of food, that incredibly systematised and ordered pattern of eating was also, I was repeatedly told, intended as a stopgap measure, a way to retrain my body and brain until these healthier habits were so well entrenched that I could start to bend and break the rules without them disappearing entirely. New normal was a stepping-stone to normal eating. It would give way again to normal. New normal wasn’t something I was supposed to need forever.

Except that it was, and it is; and slowly coming to understand that my new normal was one of lasting illness, of endless small concessions and adjustments, and that this wasn’t tragic or a failure to recover, but a way of living that was pragmatic, practical, kind – this, more than anything else, was what helped me regain my sense of agency and adequacy and to feel less ill within my illness.

Sometimes I think that what made the difference for me last year was that my being so unused to regularity, to anything that isn’t unpredictable or precarious, meant that when these things suddenly fell away, when the world for so many people became uncomfortable, unreliable, unstable, it didn’t feel all that different for me. More often, I think it’s because I first felt that shock of vulnerability, that realisation that my body was always subject to forces that I could not control or predict, close to two decades ago. It was bewildering and terrifying and a destabilisation that I felt at my fundament, my core. It took me years to come to terms with this; and the pandemic granted no one else this luxury of time.

Last year, I felt equipped. I’ve understood the precarity of my body and the limits of what it can be exposed to for years; I’ve had to moderate what I want to do with what I’m physically able to do for just as long. I’ve been isolated and lonely all my life. I already worked from home. None of these things needed adjustment.

Early on, once the initial shock, that first wave of anxiety and wild speculation and fear had passed – I felt these as much as any other person, and am not pretending otherwise – I remember being startled by my new congruence with the world, the way that so many people were finding difficult the parts of my life that only now feel unremarkable to me. This too is something to which I’m unaccustomed: my experiences don’t often fit the narratives that are told about our world, what we can expect within and from it. But neither did the pandemic – which is why we had no way to understand it, nothing to measure or map it against, no way yet to find its meaning.

The media kept calling it unprecedented, even though it wasn’t – we’d just forgotten or ignored those parts of our history, looked away from those parts of the world.

I felt like a precedent. New normal looked so much like my existing normal, and I wanted to tell everyone that they would be okay. That it would hurt, a lot, but eventually they would be okay.

My girlfriend talks a lot about the idea of normal, both in conversation and for her work. In part this is because her two main fields – technology and design – are disciplines in which assumptions about normal behaviours and normal desires underpin everything that is done (and are often responsible for some of their biggest mistakes). And in part this is because she too has never fitted within the boundaries of normal, much as she once tried, and because she was forced to abandon the attempt years before I could. Her more comfortable, although still incomplete, acceptance of this was a revelation to me when we first met. Normal, she always says, is a simple mathematical term. It is the measure that accounts for everything that sits beneath the steeply-sloped part of a bell curve, the part that rings the loudest when you strike it. Normal, she always says, really just means common. It doesn’t mean standard, or regular, or natural, or any variety of good; just as it doesn’t mean boring or simple or bad – all it means is that there’s a lot of it around. But even as a mathematical measure, normal always excludes around 30 per cent of any sample – which is a huge amount, no matter how you look at it. New normal, whatever it might look like, must inevitably do this too.

My work doesn’t depend on hospitality or service or performance, and so it didn’t shut down entirely; nor is it low-paid or precarious enough that I would have had to turn up even if I were sick. I don’t live with children who would have needed home-schooling or care; I wasn’t stranded in a country where I was not a citizen and couldn’t access government support. I wasn’t separated from my family and friends, or facing eviction. No one I love was ever in immediate risk. I know I’m lucky, that even as my illness made me both more vulnerable to the virus and better trained to live with its restrictions, there were so many people who suffered, who suffer still. I watched the news and the numbers from overseas and interstate, and couldn’t shake the sense that my good fortune was as outrageous as it was entirely accidental.

I’ve been trying to work out how many years it has been, now, that I have been working from home, counting backwards through the different houses that I’ve set up beds and desks in, all of my different jobs and roles. But I can’t do it, can’t seem to figure out exactly when it was that I began – and that’s because, I realise, aside from an ill-fated three-month stint in my first job straight out of uni (my girlfriend insists this doesn’t count because it was with a theatre company), as an adult I have always worked in this way.

I’ve worked from home after my shifts and on the days that I had off from crappy part-time jobs and I’ve worked from home for small and new and sometimes loosely-tied organisations where every employee worked remotely. I’ve taught casually in universities, driving in for few-hour blocks of classes once or twice each week. There have been piecemeal contracts and one-off workshops and self-employment, and across it all, the work of writing. For as long as I’ve been working I have been working from home, from a desk beneath a window in a sharehouse bedroom, and entirely alone.

I like working from home. I’ve always said this, and as the years have passed it has slowly become more wholly true. Each time I walk into an office building I’m confounded by how artificial and airless they always seem, how many people exist there together, without having anything in common except for their shared space. I can’t settle in these buildings, always feel itchy and on edge – it’s only recently that I have realised how common this is for autistic people (new normal). An office never really was an option, although I obviously didn’t know that when I first started working from home. In those early years, I didn’t know a single other person who also worked out of their home. It can’t have been that rare a situation, I know now, even though the full power of the internet for opening up small businesses and crafty cottage industries run out of peoples’ kitchens had not yet been realised. Working from home just wasn’t something that people in my world, from my world – suburban, practical, sensible-jobbed – ever did. (Yes, I’m talking about class.)

What I’m saying here is, I had no model of how to do it. I was young, and still ferociously determined; already unwell but years away from knowing it. I threw myself into my work, despite having no idea of how to manage it in these conditions but also as a way to try to cope with these conditions by refusing them entirely. I worked full, long days without real breaks; sometimes several of these would pass without my speaking to another living creature. I hustled, although that word was not in common usage yet, often worked on three or four (at one time, seven) different projects or contracts simultaneously. I know what I was thinking, always, was, this has been my choice. This was what it meant to try to write as a profession, to work without so many of the structures and the safety of the regular working world, this was what I had to do to make it work. I chose this, I kept thinking, and so I had to make it work. I had to find a way to make it work.

The most useful, most damning, story about normal I’ve ever encountered, comes from design – a now-famous cautionary tale taken from the U.S. Air Force in the wake of the Second World War. When designing the cockpits of their new jet fighter planes, the military engineers drew on the country’s enlistment records – medical histories which included for each recruit an extensive series of body measurements (the obvious ones, but also things like thumb length, the distance from eye to ear, circumference of the ankle, neck and wrist). It was a vast database, and one that was perfect, the engineers thought, for ensuring that the small cockpit space would best fit the average pilot who might sit there.

But the results were disastrous – which is to say, the planes kept crashing at a truly spectacular rate– because even within this already fairly homogenous sample (all men, all relatively healthy, and all under six feet tall, a requirement for pilots at the time) not a single person actually matchedthat average, that determined normal. Not a single person could easily or comfortably manoeuvre all of the controls, because none of their bodies individually fitted the standard that had been determined from them collectively. The design was soon amended to include adjustable seats and levers and steering wheels – and the accident rate dropped immediately. (The same, incidentally, is true of cars – when all of these fixtures were indeed fixed in place, women had far more accidents than men, for whose bodies cars were originally designed; since these have been adjustable, the reverse has proven to be true.)

Some designers call this kind of misapprehension ‘the flaw of averages’; I know the reason that I like particular idea so much is because so many one-size devices don’t account for people my size – the automatic doors that don’t open for me unless I approach them dead-centre or wave my hands above my head and into their sensors’ reach, the sunshades in my car that don’t quite keep the afternoon light from my eyes unless I stretch my back and crane my neck and all but lift up from the seat. For how much of the made world doesn’t fit me either: the comfortably cool cinemas (and offices) that I shiver in, the cheerfully-lit shopping centres that blur my brain, the generous portions in restaurants that so easily bring me to panic: all of these averages and normals that constantly remind me of what I’m not.

Over the years, I did find a way to make my means of working work, to build routines to shape my days, to be gentler with myself on the days that felt stodgy, and to seek out small interactions when my mouth and tongue felt stiff with disuse. I got a dog, and it was only when I found myself continually surprised by her continual soft presence by my side that I even noticed how lonely I had been. Against it all, that constant drumbeat: I chose this, and so I have to make it work. I chose this, so I am not allowed to complain.

At the beginning of the pandemic, both of my housemates worked in governmental offices that shut down suddenly, and over one weekend they set up their clunky laptops in their bedrooms, one of them on top of a trestle table because she’d never had – and never needed – her own desk. It felt like the transition happened overnight, and in the first weeks especially they were drifty and skittish, surprised by how the days all felt so long. One cooked elaborate lunches with multiple ingredients and many-step prep; the other did load after load of washing. There was a lot of online shopping. We intercepted each other on the staircase and outside the bathroom, and destroyed our internet connection one morning by joining three separate Zoom meetings at the same time.

In the media and on the socials, people were joking about no longer needing shoes or bras, or despairing about their stir-craziness, their boredom, the way their days seemed to melt together. I don’t know how I’m supposed to focus, one of my housemates said, I don’t know what I am supposed to do.

It took me some time to realise it, but I took great solace in this. A strange and not uncomplicated solace, but a deep one nonetheless, in how difficult my housemates and my friends, the wider world, was suddenly finding the everyday conditions of my life. It was working from home that made this obvious – when everybody around me started talking about the shapelessness, the isolation, all of that time in one’s own brain, how there’s no way to diffuse any small madness or emotion that might build across the day. I felt something lift within me. I hadn’t quite been able to admit that working in this way was hard (I chose this), didn’t quite believe in this difficulty when I’d only felt it in in myself. I’d seen it only as my own weakness, some kind of flimsiness of self. I didn’t know I needed this reassurance until that small but somehow deeply-felt nugget of blame fell away.

So much of the pandemic felt like this to me. Time and time again, I saw so many people struggling in so many small ways to adapt to the way I’ve had to live my life for so long. I kept remembering how much of an upheaval it had been to become ill, to adjust to this, but also how determined I had been to keep on keeping on, to grit my teeth, to not complain. So much of the pandemic, for me, was validating in this way, and I was heartened.

I’ve never felt so comfortable in my life.

One of the strangest things about the idea of normal is how often people tell me they don’t care about the idea of normal. And that I shouldn’t either, because normal isn’t important, isn’t real, doesn’t matter. It’s not that I disagree, more that I think so many of us do care, even or especially as we protest the opposite. It’s hard not to, given that it’s always all around us. I didn’t think that I cared either, until recently – but this, for me at least, was the revelatory power of my autism diagnosis. The very definition of neurodivergence, as a category and a term, is that it is not typical, not the norm. It is a diagnosis that says, yes, you are different; yes, your brain doesn’t operate in the usual way – and as such, it makes sense of so much of the confusion and diffuse hurt, that bruisedness, that I have felt for so much of my life.

Many psychologists account for the much higher rates of mental illness in autistic people (especially in those diagnosed late, like me) by claiming this as the toll of trying – and constantly failing – to fit to social norms and pressures that are unspoken and unexplained and only really evident when you get them wrong. No person deliberately exerts these pressures. The abrasions that are caused are small. They’re often hard to notice at the time, but they happen again and again, relentlessly and unceasingly, and it doesn’t take long to feel yourself entirely skinless. It’s difficult to experience this across an entire lifetime and not think yourself at fault.

By this reckoning, it sometimes seems to me that it may very well have been the idea of normal that caused the problem, led to my illness, in the first place. How constantly and keenly I felt myself to sit outside of normal, how I never knew how to inhabit whatever options might be left to me. How I couldn’t seem to figure out or follow the rules that operate in the world, and so developed some of my own, iron-clad and fierce, in the hope that they might contain me instead.

Neurodivergence is framed differently to illness: it is not a problem, not something that could or should be solved or cured. Instead, what it requires is adjustment (new normal) and understanding, a gentleness that I’m still learning to reach for. In a way, I taught myself to do this before I knew precisely why it was so necessary, to stop pushing myself beyond my limits and reaching for normal-looking things that I never could attain. I had no model for how to do it, but I found a way to make it work.

The solace I felt when the people around me were struggling to adjust to working from home, however, was always tinted with frustration, because I know too that it’s only because I’ve always been able to work from home that I have been able to work – consistently, even at all – across the long duration of my illness. I have so many disabled friends who’ve had to leave their jobs, or the workforce entirely, because their employers wouldn’t grant them these conditions, as if it were the office itself that were the work, rather than whatever it is that happens inside of it, or some kind of physical supervision or crowd censure is needed for adults to actually do the tasks they are paid to complete.

Disabled people have been asking for workplace flexibility for years, for our employers to grant us the ‘reasonable adjustments’, and the autonomy – to say nothing of dignity – to not have to try and fit into spaces and routines and interactions that cause us harm, if they are even possible at all. The technology for remote access to intranets and email and tele- or video-conferencing has been around for even longer. When the pandemic hit, it felt like these concessions were granted universally, immediately, and without fuss – but only because it was now able-bodied people, normal people, who needed them. I don’t think any employer found this simple – but it certainly wasn’t as difficult, impossible, as they’d been telling us it would be.

It was barely a week later that the government ‘supplemented’ its income support payments across the pandemic, in the first real increase to these payments in 26 years. Ineligible for the supplement, though, were people whose unemployment preceded the pandemic, and those on disability support (the ‘undeserving poor,’ as some sections of the media dubbed them). In the months that followed, doctors and specialists were suddenly allowed to practice telehealth, holding appointments over the phone or via Zoom – where previously, and inexplicably, these kinds of appointments were ineligible for Medicare subsidies (I couldn’t help but think of how much this would have helped me when I had two or three such appointments every week and walked the route to every single one of them). The number of subsidised psychology sessions available each year was doubled. Allowances for extra sick leave were made by many employers (though this was unmandated and far from universal). I’m certainly not the only disabled person who was infuriated by this – not by the provisions themselves, which are so welcome and so needed, but for how long they’d been denied to us, deemed unnecessary.

What it made me realise was that until this physical precarity affected the wider world, the wider world had not seen me as fully human, as worthy of this kind of care.

By April, my house was suddenly far less empty, far less quiet than I was used to. And this was my biggest adjustment last year: my working conditions became more social, full of people at a time when so many people were adapting to being far more on their own. I liked the casual kindliness of this, the way that there was always and immediately someone close at hand whenever the fraught emotions of that time overtook any one of us, the way we added to our routines a shared morning coffee run, a weekly afternoon dance-off in the front room that also involved singing along at the top of our lungs (and for which I started dressing up in increasingly glittery outfits, just because I could). But despite this, I couldn’t help but feel unsettled, distracted, newly conscious of my movements and habits, my space.

I felt the loss of my solitude, that is, and I felt it deeply. All the more so once I started seeing so many news articles about combatting loneliness, about the phenomenon of skin hunger, that profound and painful longing for physical touch in times of isolation – and wondering what it was about me that so ached for the opposite.

Within weeks, I started shoving the essentials of my workplace – my laptop, my two notebooks, a folder full of research, books – into a backpack and carrying them to my girlfriend’s house, ten minutes’ walk away. It wasn’t technically legal – the restrictions at the time did allow people to visit their partner, but neither of us would have come close to using that word at that time. But because she lived alone, and because she is also chronically unwell, and had only recently been discharged from a hospitalisation, we figured we could call it ‘caring duties’ if the question were ever asked.

So this is how I worked across the lockdown: at my girlfriend’s desk or on her couch or on the outdoor setting in her garden that she’d draped with velvet and lace netting to soften the dark concrete the whole space was spackled with. We’d alternate between these three locations, the desk taken up by whoever was on a call or teaching or recording; we learnt that if we timed our afternoon coffee run for 3 pm, the café on the corner was likely to palm off its leftover pastries for free. But we did all of this cautiously, especially at first, both of us nervous about sharing so much space so frequently. My girlfriend too was used to working from home and to being almost entirely on her own; she too treasures her silence, and is reticent with the parts of herself that feel awkward or difficult and unshareable. She too didn’t think herself cut out for this, and so I know that we were both surprised, and even shaken, by how easy and how lovely we quickly found it to be, working alone, together. I don’t think either of us ever thought it possible. We live together now, in a different house almost equidistant from each of our old homes, our books comingled (but alphabetised) across our shelves. Without the pandemic, I’m certain this would not have happened.

It was from this space – sitting at my girlfriend’s desk in the corner of her living room – that I attended my first online book launch, one that was hosted by my local bookshop over Zoom. Technically, I was working: I was interviewing the author, who had originally intended to fly to Sydney for the occasion, but now sat in front of her bookshelves with a lanky greyhound curled up on a couch somewhere to her side. None of this is remarkable, not anymore; but what was wonderful that night, what felt thrilling and precious, was watching, as the event kicked off, the names of the people who were attending light up across the screen. The launch was for Katerina Bryant’s book about disability, invisible illness and hysteria across history, the lives of women these have affected; and what I rapidly and joyfully realised was that so many of the attendees were people who I recognise, I know, from Twitter. Out in force was so much of the community that has formed there, of and for disabled writers and readers – Literary Disability Twitter, as it were. Being together like this isn’t something that we’re normally able to do: not only do we live in different cities and different states, but so many of us so often aren’t able to take our bodies or brains to an in-person event. The joy in the room, even without there being a room, was palpable, the energy as well. I buzzed with this for hours.

It was only later that I realised that this kind of gathering never should have been a rarity, something exceptional and so thrilling. It’s been possible for us to be together like this – just as it’s been possible for our workplaces to be flexible – for years. For years it should have been this way, and the fact that it hasn’t is a tragedy.

Once I’d settled into this new routine, this new space, my work last year was largely uninterrupted. If anything, I was busier than usual, having taken on some extra teaching at a different university (where I had to fight to be able to continue to teach online, because their return-to-campus exemptions were only available for permanent staff). I know these circumstances were unusual, that continuing on like this, largely untouched, was as rare as it was profoundly fortunate. The sole reason I am mentioning this is because it’s only now, almost midway through 2021, that I’ve found myself foundering.

Suddenly, with the worst of the pandemic most likely behind us, in this country at least, and with our lives quickly ‘opening back up’ (another phrase that doesn’t sit that comfortably with me, given that there was never anything closed about my more cautious existence) my work has started to feel difficult, overwhelming. I can’t concentrate, or focus long enough to write in anything other than fits and starts. I can’t seem to stay organised, to feel like I’m keeping up (and I’m certainly not getting ahead); the way my email would be piling up if it had physical form is terrifying. I’m reading less. There just isn’t enough time. Last year, I would have shrugged all of this off, as a very natural response to upheaval and uncertainty and disruption and doubt, to these unprecedented times. I would have felt myself to be in a very normal boat, all of us rowing together (we’re all in this together, after all).

This year, it’s the return to normal that I’m finding hard. It doesn’t feel like there’s more work, or that it’s spread more thinly, or that anything practical or quantifiable has changed. It’s more that I’m not ready to readjust, to go back to a normal that never suited me all that well. I don’t want the world not to have changed. I can’t bear for the world not to have changed.

It was at the end of March last year that Scott Morrison first used the word snapback. I hardly noticed it at the time, in no small part, I think, because so much of the reporting, even when it touched directly on this, still used the phrase new normal in its headlines. But Morrison hardly ever said new normal – I can only find the phrase appearing once in government documents and announcements from last year – because a new normal isn’t something he ever had any interest in. Instead, Morrison has insisted that there will be a snapback, a quick return to regularity; and the first time he did so was mere days after his government announced its programme of pandemic-response support. That supplement to the dole (but not the DSP), those JobKeeper payments for struggling businesses (as long as they weren’t universities or arts companies or employers of short-term casuals), the free childcare, extra Medicare benefits, eviction moratorium, emergency access to superannuation – none of these, he said, should be considered a new normal, none of these would last. It was snapback that was the plan; snapback to the old normal and to business as usual that we should hope for and expect.

But I don’t want to go back, snappily or otherwise. I don’t want the world not to have changed. I enjoyed my brief congruence with the world; I enjoyed having my needs met and understood, the rare privilege of feeling typical and un-alone. And having to relinquish that once again, having to hand back over that consideration of my full humanity, feels nothing less than cruel.

In the opening page of Illness as Metaphor, Susan Sontag writes that alongside our regular world exists a ‘kingdom of the sick’, one for which we all hold ‘dual citizenship’, even as we deny this fact for as long and as often as we can. During the pandemic, it felt like the entire population came to inhabit this kingdom, to live alongside me and according to its customs and laws, those which have shaped my life for so long. A lot of people liked it here, I know this, even as so many more felt homesick and couldn’t wait to return. I think I let myself forget that it wasn’t a migration I was witnessing, but just a brief and very busy tourist season. But I don’t have an exit visa; I can’t ever return to the kingdom of the well. I know I’m going to be left behind, can feel it happening already, once again. It’s difficult to have to grieve this all over, once more, to have my normal and my world so vehemently rejected, once again, to watch on as wider society refuses to adapt for people like me, or to change.