Manifesto for abandoning my flesh body and becoming a formless mist

This essay was published in the 2018 anthology ‘On Bodies’ by 3 of Cups Press and is reproduced here with their permission.

The mind inhabits the body the way a tenant inhabits a house — and it is only the mind that can make a body a home.

All body-houses are different, and everyone feels differently about where they live. Sometimes the house is in perfect condition and you’re delighted to live there; sometimes it could do with a fresh coat of paint; and sometimes there’s black mould on the ceiling, cracks in the walls, you’re pretty sure the previous tenant was murdered in the basement, and you can’t afford to move.

In disability studies, academics like Rosemarie Garland-Thomson talk about the concept of the ‘bodymind’. They propose that the body and the mind should be treated as a single entity. After all, when one feels pain, it reflects that pain onto the other. When a tenant is sad or under stress, their house gets messy or falls into disrepair, and when a house gets messy or falls into disrepair it causes stress and misery for the tenant.

I’m disabled, and I hate my house. Well, my metaphorical house — my real house is fine. I’m here to propose something radical: let’s all move out and go off-grid, by which I mean sublimate ourselves into an aqueous vapour and float in the atmosphere until the inevitable heat death of the universe.

If you still need to be persuaded about this admittedly extreme concept, I’ve prepared something for you: a manifesto. Maybe, once you’ve read it, you’ll consider joining me.

1. Leisurely

Mist gathers, then settles. It hovers a while, and — at its own pace — it disperses. It is in no hurry, and has nowhere in particular to be.

Think of a disabled body as a second-hand car. It might have the same controls as a newer model, and all the same numbers on the speedometer. But it doesn’t have all the fancy features: no power steering, no eco-friendly adjustments to the fuel tank, and rubbish suspension. So it goes at half the speed, it needs more frequent refuelling and servicing, it’s more expensive to run, and sometimes it’ll give up the ghost without warning and leave you stranded on the hard shoulder for hours. This metaphor has its limits — disabled people don’t get to trade their body-cars in — but the cost of upgrading components definitely still holds up.

To live in London in 2018 is to live life at 1.5x speed — not so fast as to be unrecognisable, but too fast to be entirely comfortable. Couched in drizzle and smog, it’s like inhabiting a low-budget greyscale remake of D.C. Comics’ The Flash that nobody asked for or wanted. The ancient vehicle that is a disabled body cannot move at the speed the city demands. In mine, I nearly always find myself stranded by the roadside, watching everything and everyone else speed past.

It is no more efficient to travel at speed and stop frequently than to travel slower and keep a constant pace. Where is London trying to go, and why is it so eager to leave disabled people behind?

Forget the TARDIS: if you want to distort the course of time, develop a disability. Gasp as journeys that used to take one hour take three because you have to change trains a million times to find the step-free route. Marvel when your body-car refuses to start because you’re too exhausted, anxious, or low on executive function to get moving. It doesn’t matter how much time you allocated for the journey; your pace will always be wrong.

I’m very fond of half-seriously labelling abstract concepts as ableist. Here’s one: the way we punish lateness is ableist, because in the world we’ve created — where movement is impossible in an ailing body-car and time is warped by the stress this causes — lateness is inevitable. I can plan until all my pens dry out, but if three bus drivers in a row won’t let me on because there is no space for my wheelchair, that’s it.

The formless mist moves at its own speed, unburdened by momentum, time constraints, or miscellaneous references to comic books and science fiction. You can’t force mist to move at any speed: if the pace is unsustainable, it will disperse and reform elsewhere. Time doesn’t govern it the way it does a disabled body.

Join the formless mist. Shed all your concerns about time and pace. You’ll never have to worry about people staring at you when you show up late to meetings again.

2. Ageless

Each instance of mist is brand new, but how many times have its water droplets condensed and evaporated? How many bodies has each particle been a part of? Mist is at once as young as a new breath and as old as the world.

My sixty-two-year-old mother refuses painkillers constantly, perhaps as a point of pride. She marches through migraines, sprains, cancer, even, until they bring her to a standstill. On one occasion, she literally walked for three days on a broken ankle. Age has barely slowed her pace: she still works like someone in their twenties, hauls heavy objects around, and is constantly busy.

At thirty, I take painkillers at least twice a day. When I walk, I do so with a cane, like someone more than twice my age. On some days, I can’t walk at all, so I use a wheelchair. I have lost count of how many people have told me I’m too young for my mobility aids. As if chronic illness, though pitiless, were nevertheless discerning enough to discriminate based on age; as if I haven’t aged fifty years in the span of ten. My flat cap and pipe seem to have got lost in the post, too, so I can’t even rock the whole ‘old man who likes to shout “get off my lawn” at teenagers’ look. Life is cruel.

Curiously, though, using mobility aids can also reverse aging. It’s uncanny — on my feet, I’m ‘madam’, but in my wheelchair I’m ‘poppet’ or ‘sweetheart’ or ‘love’ — perhaps ‘buddy’ if my presentation is convincingly masculine enough. In any position, however, I am an adult. In a way, I’ve beaten the formless mist to break free of physical age: I’m the morning, afternoon and night of the Sphinx’s riddle, all at once. More, even — if the Sphinx ever said anything about wheels, it seems to have been lost in translation.

With all this ageing backwards and distortion of timelines, there’s probably a remake of The Tale of Benjamin Button in here, somewhere. Hit me up, HBO.

Occasionally, my able-bodied friends, or celebrities around my age, will joke about how they can no longer achieve the same feats of endurance or constitution they could in their mid-twenties, and I will nod and try not to cry. The thing about faulty collagen is that — outwardly, at least — it keeps you young. Never mind that I walk at the same pace as my ninety-three-year-old granddad; I get mistaken for an undergraduate every time I set foot in a university. I look years younger than I am, but feel decades older. A body in chronic pain is an ocean of contradictions.

Look at it this way: mist could be every particle ever released by any living thing — every animal’s exhalation, every plant’s respiration. Mist is anything that’s ever evaporated. But it’s rejuvenated everywhere, every second, combining with things it’s never met before. It truly transcends age, because it’s never quite the same thing twice.

Alternatively, look at it this way: mist is made of water. Water doesn’t age and isn’t subject to humanity’s ridiculous ideas about what time means. If it was, it would probably have said ‘sod this’ and left us all to wither by now.

Join the formless mist. Defy all expectations placed on you by youth or age. You’ll never have to answer invasive questions like ‘what’s a whippersnapper like you doing with a walking stick’ again!

3. Beautiful

Mist is an artist in nature, refracting and diffusing sunlight; obscuring the ugliness of the weather, or — in lifting — bestowing clarity. Its shapelessness defines the beauty of its presence.

I am beautiful. It feels so weird to write that. My instinct is to immediately write something self-deprecating to balance it out, but I have a point to make here, so that can wait until later. I might not be ‘conventionally attractive’, but I’m attractive enough to be privileged. And I am, according to a few self-defined experts on the street — usually male — ‘too pretty to be disabled’. Thanks, I guess. I’ll be sure to tell my creator that next time we bump into each other at the supermarket.

‘I am beautiful.’ It looks wrong — both because of how I usually think of myself, and the fact that it no longer feels like it belongs in the plain text of a paragraph in a book. It should be on Instagram or Tumblr with a soft-focus picture of a mountain in the background.

Those words have a weight. They are a political statement. For so many marginalised people — disabled people, people of colour, trans people, fat people — they are seen as a controversial statement. To say them should be freeing, but I’m never sure if it’s a weight that I want to carry, whether other people hand it to me or I’ve picked it up myself.

People who look like me are starting to appear in magazines once in a blue moon, but they’re always ‘disabled models’. Disability modifies all of my other attributes. Dr Stephen Hawking’s achievements were always filtered through the lens of his disability, and so are mine. I’m a disabled writer. A disabled musician. Pretty, for a disabled person. I want to be beautiful, yes — and I am, I am, I am, I’ll say it until I feel it — but I don’t want to spend my life constructing and defending my own beauty for people who won’t look at it. I just want to be.

And I complain, but as an average-sized white person perceived as female, I have an easier time than I would if I was fat, a person of colour, more obviously trans, or any combination of those things. Because fatness is (wrongly) seen as a lifestyle choice, fat disabled people are often blamed for their own illness by both medical professionals and the general public.

The body positivity movement began as an expression of the beauty of fat bodies. As wonderful and healing as it can be, a lot of its proponents make the mistake of proposing bodily health as some kind of counterbalance to fatness. The aphorism ‘look at what this body can do’ is cold comfort if your disabilities rule out your ever being able to achieve whichever feat of athleticism it’s inevitably captioning on Instagram.

Disabled bodies are beautiful. Their beauty comes from the people inside them, from the non-physical feats they are capable of, from the joy in their hearts. I am beautiful. I have a singing voice that charms everyone who hears it, a written voice that persuades and educates, and a kindness that draws people to me. That and my modesty. So much beauty is erased from the world when people are reduced to their physicality.

Some years ago, during a 5 am journey through the Sicilian countryside, I had the privilege of watching the sun rise over the Hyblaean Mountains. In the shifting hues of the early morning sky I watched the mist rise, unveiling the velvet and ivory of the landscape and bathing it in gold. Mist isn’t just beautiful on its own — it reflects beauty onto everything around it. Or, if the ‘mysterious and intimidating’ aesthetic is more your style, you can take your cues from The Hound of the Baskervilles or Silent Hill.

Join the formless mist. Isolate your beauty from your shape once and for all. You’ll be Instagram-ready anytime, anywhere. #nofilter

4. Fearless

Mist, once evaporated, will condense again elsewhere. It will be changed, yes, in density or character, and transported — but still, it will be. If mist knows anything, it must know that.

Pain and injury are inevitable for anyone, regardless of their body type, but for many disabled people they are as routine as waking up each morning for a job you can’t stand. The feeling is almost too pedestrian to be accurately called ‘dread’, but it’s there, gnawing on the corners of the mind like a gerbil in a cardboard tube.

Sometime today, you think, I will have to make conversation with that wanker from HR whilst we wait for the kettle to boil.

Lots of offices have That Person who’ll loiter silently behind you, waiting for you to surreptitiously check Facebook so they can report you for slacking off. This work environment demands constant vigilance. Is it safe? Are they lingering just out of sight, waiting to catch you out?

Sometime today, I think, I will shift slightly in my chair, and that tiny movement will nevertheless be enough to dislocate something.

Just the prospect of leaving the house is fraught with (sometimes imaginary) peril. What if something happens to me whilst I’m out? How will I get home? Will anyone help me? Will anyone notice? Will I be cautioned by the self-appointed Disability Police if I move in a way they think I shouldn’t be capable of?

Since disabled people are a workshy bunch of layabouts out for all we can steal — the unmatched wealth of starvation rations and inadequate housing support offered by the UK welfare state — it’s only right that we should be pursued by strangers who have no concept of our medical conditions, hurling insults and threats of being reported to the relevant government bodies.

I want to laugh about this. I do. This is where I should be giving you my pithy rejoinder about the internet or age-inappropriate headgear or science fiction, but I’m struggling to find my sense of humour. I constantly look over my shoulder in case someone is monitoring my wheelchair use against the days I walk out of my front door. Every brown envelope that lands on my doorstep gives me a panic attack, regardless of whether it bears the mark of the benefits office.

I use a different name on social media. I try to avoid photos where I’m standing. I try to avoid photos where I’m smiling. In the public imagination, there’s no joy for disabled people — only misery and longing. If you challenge that, they’ll force fear on you like that colleague who always plays their most obscure, cerebral music on the office stereo in a bid to ‘educate’ everyone.

There’s no real way to threaten mist. Even if it’s forced to evaporate, it’ll eventually condense somewhere else — different, perhaps, but still there. In any case, water is no more subject to human emotions like fear than it is capable of remembering particles of healing herbs it touched thousands of years ago.

Join the formless mist. Feel no physical pain. Rise, both figuratively and literally, above the busybodies who’d rather see you starve than experience a moment of happiness. You’ll never be anxious again. And you’ll be water vapour, so you can deactivate the office stereo.

If you feel weighed down by time, age, appearance and fear, the formless mist is beyond feeling or caring, but it is here for you. I’ll admit that we don’t quite have the science nailed down yet, but if we’re working on being able to upload the human consciousness into machines then mists can’t be that far behind. The petition will be up on 38 Degrees any day now. Stay tuned.

And if that feels like too much, don’t worry. The formless mist understands.