NOTE: I wrote this for a guest issue of a pretty well known international fashion/alternative magazine in 2023. A good friend who was asked, nay, solicited, to write an article by them, tapped me to do one too. Everyone was enthusiastic about my pitch for the issue, which as I recall was about ‘Revolutions’. The guest editor seemed enthusiastic about “post-revolution” too. So, I wrote this, and submitted it to the team for editorial feedback. I was prepared to rewrite if need be. It would probably need it.

I never heard back from them again.

They didn’t publish a text by my more desirable friend either. Make of that what you will. But here it is, for posterity.

***

It takes six pairs of hands, and anything from 120 to around 150 years of life and experience to get me out of bed of a morning. 

It takes trillions of bacteria moving, respiring, growing, dividing; maintaining the energy systems that live in coils of folded, rhythmically pulsing flesh to get the glucose that powers the muscles that strap me into the woven sling. Then, to hoist me upward, swing me back and down into the chair that my nervous system extends itself around and through. It’s a process where an ‘I’ is nebulous – there’s only a thick, fuzzily-outlined we.

We move and any bumps and impacts, any inclines – are felt through metal and plastic, rubber and foam, though there are supposedly no nerves in a wheelchair. Nonetheless, felt they are, the proprioceptive systems extending cognition and processing – a web, a field of felt-sensing that moves through myriad materia; a constellation of bodies that blurs the outlines of the human. A philosopher like Donna Haraway, with her infamous Cyborg Manifesto might say we were thinking-with, feeling-with the chair. But if Haraway or others had asked any disabled people? They might suggest that the chair thinks us, feels us. Shapes us. Is part of an intricate field of influences. Allows us to move through the world – to engage in the makings of worlds, plural. Those worlds which are not upright, not bipedal, not rectilinear – but perhaps rolling, rhythmic as tides, waxing and waning like the moon – spastic as a seizure, as a fit. 

No escape for us. Just diving into the cracks, descending amidst the realities of cleaving to that which maximises life. Nothing to be saved, nothing to be fixed, just embracing necessity.

Constantly alert and responding to environments that were never made for us; tracking the minute shifts, the ebbs and flows, the precipitous crevasses and thrumming near-burnouts  of our energy levels. The way flesh meets not-flesh and becomes reconfigured, where strategising over food and drink intake becomes an absolute requirement when we explore a new place; rationing fluids if there’s no bathroom, no place to change catheter or clothes. Scouting the potential rest-spaces as if it were a military exercise, like an expedition to the desert, the warming but still extreme North Pole.

All amidst a major city, a human hive.

Roads and pathways have cambers and cracks unseen and unfelt by those flowing through the concrete canals on upright feet. The so-called Anthropocene looks different down here, closer to the curvature of the Earth. Disabled people know what it is to be owned by earth, by a slope, by a lip, a root, a threshold, by wet grass. The golden sands of summer’s relief grasp wheels, catch canes, bog them down. It’s enough to make us realise we are not on land, but in land, embedded and entangled. What if, then, the human project is one of insulation?

The Cyborg Jillian Weise suggests there’s such a thing as tryborgs – non-disabled people trying to be cyborgs without even considering that cyborgs have existed for centuries. Cyborg is a contraction of cybernetic organisms, In Ancient Greece kybernetikos meant roughly, “good at steering”, and as anyone who has driven, biked, rowed, or sailed will tell you, that requires constant adjustments to stay on course. You, the reader, may know first-hand on a deeply carnal level, the micromovements that the environment requires you to be aware of in a constant feedback loop, lest you drift, lest you lose control.

What if you never had control of yourself in the first place? In the last place?

Microplastics in the blood. Pollen fusing with air-pollution-particulates, inducing ever-increasing allergic responses; bodies responding to the changes in atmosphere, temperature. Plant-bodies, animal-bodies, bacterial bodies, viral bodies – internal and external. Gene complexes that have been occult processes for millions of years beneath the surface turn themselves on and off, now visible thanks to the new science of epigenetics. 

Likewise hidden then, from ordinary view, are the cochlear implants, the pace-makers, the stoma-bags, the catheters.Yet they are there, these fusions, these hybrids, modern iterations of the cybernetic fusions of the disabled. Likewise also, the horrors of these same implants becoming unsupported technologies; forced obsolescence and ‘mandatory’ upgrades are already here and happening to disabled people today in 2023 – whether that be an ocular implant being sunsetted, or a company telling an Indian family they must upgrade their son’s cochlear implant or be abandoned. These are not merely the products of a cyberpunk novel, but real, lived, and ongoing realities for millions worldwide. 

Amidst the Covid-19 pandemic, more millions experienced lockdown – their freedom of movement curtailed, unable to leave their houses except under strict conditions. Mental health declined, domestic violence and abuse cases rose, as worldwide, humans struggled to respond to a virus that broke their insulation, killed millions, and rendered countless more newly disabled. Housebound by forces beyond their control, unable to adapt: survival under such conditions became strange and troubling.

How does one exist like this for months on end? Quietly, surely, posts began to appear on social media from people who had strategies for exactly this: how to survive for years – lifetimes even – and have good lives under conditions of restriction and no escape.

Lives of laughter, joy, friendship, hope, despite chronic pain and illness, lifelong disability. Despite their treatment as second-class citizens that governments would happily allow Do Not Resuscitate Orders to be placed upon by default.

These lives are not easy: there is friction, slow taking of stock and managing of resources which are limited and fluctuating, not necessarily linearly predictable. Response to conditions which put the lie to a universal ideal; adaptation-as-unique-to-locality and need.

There is embodied knowledge in dis/ability here – a knowing how to exist under conditions of vulnerability, conditions of being overcome. Leaning into that vulnerability, into a position of what many might consider ultimate weakness, and taking it to its most terrifying extent, allows us to descend into realms rarely contemplated by desperate attempts at techno-fixes and power-and-ability-related solutionism. As we become more and more aware of the complexities of systems in situations like the crises of climate change, disinformation, and the development of computer systems which act in unforeseen and unexpected ways even as far as their own designers are concerned – so many people experience a kind of paralysis.

Along with that paralysis comes an intense dislike of what we might call “helplessness” – driving many into activity out of the need to “do” something, to not be vulnerable. This is where the suggestions raised by Bayo Akomolafe appear: “What if the way we respond to the crisis is part of the crisis?” and “The times are urgent – let us slow down.”

In an effort to escape paralysis – the seeming utmost immobility – we run the risk of throwing ourselves into trying to maximise our conventional notions of activity, progress, growth and change, and in doing so, destroying ourselves.

We might draw a parallel between a Covid longhauler who throws themselves back into activity in an effort to get ‘healthy’ again, to “push through” on a linear trajectory from sickness-to-health. Yet the virus and their immune system, entangled together in a cybernetic feedback loop, have other ideas. As with several other post-viral syndromes, our long-hauler may be flattened by what doctors name post-exertional malaise.

This situation, when attempts to “recover” cause a worsening of symptoms, is well known to those with the constellation of symptoms known as ME/CFS. Too much activity can cause a feedback loop in response, which worsens the illness and begins a cycle of being able to “do” even less. The issue then, whether physical paralysis, ME/CFS, Long Covid, or other chronic illnesses and disabilities, is precisely our notions of what we recognise and value as activity.

A paralysed person may seem immobile, but beneath the surface, countless processes are occurring. The heart still pumps, the lungs still breathe in some fashion, bacterial activity still continues, the gut still digests. Yet, we say that they are not moving, when nothing could be further from the truth. Likewise our Covid-19 longhauler, though they may be unable to walk; beneath the surface, there are interwoven systems which use up the energy in their very cells. The movements going on are not recognised as such – they are not “enough” to qualify as approved “useful” movement or activity.

Disabled people know all about these dis/approved movements – they know that the spasm, the palsy, the stutter, the very existence of crippled and crooked bodies is seen as unsightly. As something to be corrected; yet in attempting to live up to the human ideal, we exhaust ourselves, cut our lives short. So, we have no choice but to learn the wisdom of no escape. 

Sensually exploring the paralysis, the vulnerability, rather than seeking a pipe-dream of purity or idealised “health” – ability and autonomy free from entanglements and encumbrances. This is how we may very well loosen and render the boundaries of our selves more porous. We may begin to recognise other influences and agencies acting upon, with, and through us, becoming more adept at sensing, and responding to our world in beneficial ways.

Embracing this fully is no easy task – it requires acknowledging the possibility of moving-without-moving, a subsurface investigation beneath our assumptions into an intensely embodied reality, rather than one based on the surface visuality. To lean into the un-sightly, and sense in extra-ordinary ways. To accept that we also are composed of an assembly of others.

A new, or perhaps, very ancient kind of kin(ship)-aesthesis with the seemingly invisible and unnoticed; studying the liberatory potential of dis/abling the human as shape and outline. A place where metaphors of poetry and sorcery have concrete reality as another kind of lived, almost animistic experience. One of truly well-steered organisms in concert with other agencies and influences. Together then, down into the inescapable – More Human-Than-Human.