jeanne kay / 2nd place editors' choice prize in essays
In Praise of Frailty:
the paradoxical hope of a disabled future
There was always a long line – we called it a queue – in front of the Legal Advice Center by the time I got there. Kids caught in their mums’ skirts, old time Eastenders finishing a cigarette, teens in hijabs ready to translate for their grans, embarrassed-looking men hoping to be seen before their morning shift – they stood on a Bethnal Green side street, between a kebab and a hair salon, waiting for the metal curtain to lift.
I’d been given more responsibility than a law student was usually entrusted with— not because of any particular talent, but by sheer necessity. “We are simply swamped,” they’d said during my training in September, “So you’re going to be writing some of the Disability Appeals yourself. Just do your best. Anything is better than nothing.”
It was 2013, and the Appeals had become the brunt of the Center’s work. David Cameron’s Conservative government, in its relentless hunt of welfare ‘grifters,’ had turned its attention to disabled people. A private healthcare company called ATOS had been contracted to evaluate every beneficiary of the Employment and Support Allowance (ESA) in the U.K. – regardless of how severe, permanent, established, or medically-documented their condition might have been. This test was called the Work Capability Assessment. It was a cataclysm in people’s lives.
Say you have a condition that prevents you from finding a full-time job, whether permanently or temporarily: maybe you were born with cystic fibrosis, or maybe you were diagnosed with an auto-immune condition a few years back and no matter how well you manage it, there are still days you can’t get out of bed; maybe recent life events have precipitated a flare up of psychotic episodes and you’re still working on getting your bearings, maybe you have cancer and are currently in the middle of your third round of chemo.
Every week, you receive between £56.80 to £106.50 from the State - to pay for the room you’re leasing in a shared flat in Peckham; to refill your Oyster card so you can take the tube to your doctor’s appointments or to your mum’s for Sunday lunch; to buy some groceries at Tesco’s… to do whatever the hell you want with it, actually: get yourself an X-Box game, an ounce of pot, a purse you really fancy at Primark – any of the small things that you keep hearing you should forgo but that make your life a bit easier. You live in London, everything is expensive; you burn through your budget like everyone else. It’s nothing, two hundred pounds a month, and yet: it’s everything.
One day, you receive a convocation in the mail: under penalty of losing your disability allowance, you must present yourself in person at the set time and place to undergo your mandatory Work Capability Assessment. You panic for a moment, but reason with yourself— you’re not one of the “grifters” the Daily Mail keeps writing about: you’re actually disabled. They will see that, and you will pass; it is just a formality.
On the day of the appointment, you make your way across London. Maybe your friend comes with you, maybe your sister. Maybe nobody can accompany you, and you have to use almost all of this week’s allowance to pay for a mini-cab. Once you get there, and they call your name, and the ATOS employee closes the door behind you, the assessment begins. You will be evaluated according to a list of criteria, such as:
Manual dexterity
(a) Cannot press a button (such as a telephone keypad) with either hand or cannot turn the pages of a book with either hand. (15 points)
(b) Cannot pick up a £1 coin or equivalent with either hand. (15 points)
(c) Cannot use a pen or pencil to make a meaningful mark with either hand. (9 points)
(d) Cannot single-handedly use a suitable keyboard or mouse. (9 points
(e) None of the above applies. (0 points)
And:
Awareness of everyday hazards (such as boiling water or sharp objects).
(a) Reduced awareness of everyday hazards leads to a significant risk of:
(i) injury to self or others; or
(ii) damage to property or possessions,
such that the claimant requires supervision for the majority of the time to maintain safety. (15 points)
(b) Reduced awareness of everyday hazards leads to a significant risk of:
(i) injury to self or others; or
(ii) damage to property or possessions,
such that the claimant frequently requires supervision to maintain safety.
(9 points)
(c) Reduced awareness of everyday hazards leads to a significant risk of:
(i) injury to self or others; or
(ii) damage to property or possessions,
such that the claimant occasionally requires supervision to maintain safety. (6 points)
(d) None of the above applies. (0 points)
While being subjected to these tests, you might notice that none of the rubrics are about your own felt experience: your pain, your discomfort, your symptoms. Rather, what’s at stake is whether it is possible for you to overcome the disfunctions of your body to the extent that you can be of use in the workplace. The descriptors do not consider whether it is distressing for you to complete a certain task, whether it is painful, whether it is draining: how the task affects you is irrelevant: what matters is the mechanics of productivity, and whether your body can be made to comply with them.
You might notice that only absolute incapacity will trigger the 15 points necessary to be found unfit for work. Your awareness of daily hazards is reduced, leading to a significant risk of harming yourself or others, such that you might require supervision, but only occasionally? You should be able to find a place of employment that can work with that! Rejoice: there is still some capacity for surplus-value left in you.
This relentless commitment to squeezing out any capacity for labor from disabled bodies is particularly striking in schedule descriptor 9:
Absence or loss of control whilst conscious leading to extensive evacuation of the bowel and/or bladder, other than enuresis (bed-wetting), despite the wearing or use of any aids or adaptations which are normally or could reasonably be worn or used.
(a) At least once a month experiences:
(i) loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder; or
(ii) substantial leakage of the contents of a collecting device, sufficient to require cleaning and a change in clothing. (15 Points)
(b) The majority of the time is at risk of loss of control leading to extensive evacuation of the bowel and/or voiding of the bladder, sufficient to require cleaning and a change in clothing, if not able to reach a toilet quickly. (6 Points)
(c) Neither of the above applies. (0 Points).
What the British State is asking you here, is whether your diaper will hold up through your shift. In this ultimate Cartesian move, the disabled body is symbolically dismembered: no longer a whole, but the sum of mechanical parts: some might not work, but what can we get out of the ones that do?
*
After submitting to your Work Capability Assessment, you pick up what’s left of your dignity, go home, and wait. A few weeks later, you get a letter in the mail; you might be surprised to find that you were found fit for work. Your ESA has been rescinded. You can apply for unemployment benefits, but that might be taken away too —if you fail to apply to a certain number of jobs every month, if you refuse employment offers you don’t think fit you (You might think you can’t leave your kids home and commute 90 minutes six days a week to be at the opening of the fish market? We think you can!) if the mandatory self-optimization workshops conflict with, say, your treatment, or your capacity to be at a certain place, at a certain time. You were found fit for work, and you have no excuses.
The only recourse after losing your ESA is to get the decision reviewed by a judge. That’s where the Legal Advice Center came in: we would draft appeal applications that attempted to make our disabled clients’ conditions, bodies, lives, fit into the narrow categories of the schedule to reach the 15 points target. We would accompany them to the hearings, make arguments on their behalf. A lot depended on the luck of the draw, rather than the strength of the application: some judges were reluctant to interfere with the government process, while others were keen to rectify a system that was widely denounced as flawed. In 2013-2014, the time I worked at the Center, of the over 300,000 ESA appeals adjudicated in the United Kingdom, 44% were successful. That’s both a lot, and not nearly enough.
The Work Capability Assessment operation was launched in 2008 for new claimants, 2011 for existing recipients, and was presented as a necessary crackdown on fraudsters in the context of Austerity —the fiscal-cultural paradigm that had taken hold in Europe. The fact that, in the United Kingdom, benefit fraud was minimal compared to tax evasion, did not seem to matter much: the idea that vulnerable people were playing the system had fed the public imagination for years. From Tony Blair’s New Labor policies introducing work requirements for welfare recipients to Bill Clinton’s ostentatious policies tackling “welfare queens” across the Pond, the roots of the moral panic ran deep. After the 2008 Financial Crisis, Austerity gave a new wind to push the now entrenched discourse of disciplining the poor.
According to the Work and Pensions Committee, 64% of new applicants for ESA were found fit for work in the first years of the Work Capability Assessment. Meanwhile, resistance grew: cases of individuals dying a few weeks after scoring 0 points and being fit for work were widely reported by the media, ATOS whistleblowers came out to report about quotas they’d been pressured to fill, and disability groups attempted to raise hell about the disastrous human consequences of the operation. As a result, some changes were made: ATOS withdrew from its contract early, (only to be contracted back a few years later, alongside other private healthcare companies); mandatory reconsideration options were introduced to facilitate the appeals process; and, since 2017, claimants who had a ‘severe, lifelong disability illness or health condition’ such as they ‘are unlikely to ever be able to move into work’ no longer had to be reassessed periodically. Notwithstanding these tweaks, the general architecture of the disability welfare system remains in place.
When I worked at the Legal Advice Center, I’d never heard of Disability Justice as a political movement; nor was the word “ableism” part of my vocabulary. As a Humanities grad, however, the word “capitalism” very much was, and it was the lens through which I made sense of the injustices I witnessed through my work: the Neoliberal State treated its citizens not as full persons of intrinsic value deserving of dignity, but as mechanistic objects from which to extract profit. This analytical prism was not wrong; it was just not enough. I still had a lot to learn.
For example, I had yet to learn that I too was disabled. It sounds counter-intuitive: how would you not know you’re disabled? The short, but not simple, answer is this: by believing that the ways your body fails to meet the demands of the world is a temporary failure of self, always to be overcome. Rather than, what? Nobody wants to identify with their frailties. And yet.
At the end of each one of my first nineteen depressive episodes, I believed it would be the last. Even after my Bipolar and Complex-PTSD diagnoses, I held onto the belief that I – an abstract, Cartesian I of pure thought, spirit, and will– would eventually prevail over the limitations of my body. If I only just adjusted my meds, took them without fail, kept going to therapy, slept eight hours every night, did yoga, used my white light lamp, swallowed my vitamins, got a dog, read the right books - everything the careful management of life that an upper-middle class status could afford, then I would eventually bring my body under control and transcend myself into: health, stability, sanity, normalcy, productivity. I could even be a lawyer - never mind that I’d missed most of my first year of law school because of anxiety, clinical depression, and suicidality. Being functional was always just around the corner. My repeated failures to achieve this status for more than a few weeks at a time was a problem of strategy, of poor self-management - a personal weakness, always to be corrected.
This dream of hacking ourselves beyond the limitations of our bodies is not merely an individual fantasy: it is deeply inscribed into our shared imaginary. Self-optimization is a cultural impetus of late-capitalism for the able-bodied too. Even on Tiktok, that realm of Gen-Z wokeness, there’s a whole subgenre of self-improvement porn: alarms set at 4:30 am, pre-dawn workouts, home-organization hacks, bullet journals, water by the gallons, protein regimens, forty-day challenges. These short dopamine-eliciting videos inspire the watchers to join a lifestyle where the body can be tamed into near-robotic perfection: actions are to come solely from the pre-frontal cortex, decisions only teleological. The human condition envisioned by this showcase is one of perfect control of the body by a disembodied, supreme mind, one in which weaknesses, frailties and vices are brought into submission through willpower, discipline, strategy. Neurotransmitters are summoned, brains hacked, cells fueled as machines – protein in the system like coal in the furnace. Failure and deviation for the plan are acknowledged and tolerated solely as opportunity for growth, chances to rebound, moments of reckoning. Laziness, mediocrity, ennui will be conquered. And our promised triumph means nothing so banal as ‘success,’ professional or otherwise: no, we are not in the realm of an 80s self-help book on tape. What we are striving for is comprehensive human self-realization: the attainment of the best-self.
The best-self, it must be noted, needs self-care, as part of the array of tools at our disposal to manage ourselves out of the crassness of human frailty and fallibility. The care of the self extends our stamina, pushes back the body’s limitations a little further so we can become a little bit more best. Sleep becomes something to be optimized for full regeneration. Doing nothing is something to be planned deliberately, to increase future productivity.
In How to do Nothing, Jenni Odell reminds us of the historic slogan of the labor movement: ‘8 hours for work, 8 hours for sleep, 8 hours for what we will’. That what we will, Odell points out, is a claim that we seem to have relinquished. To demand time not earmarked for leisure, recovery, self-care, personal enrichment, but something entirely undefined —something we are not to be accountable for, even to ourselves — feels like a lost art, a type of self-determination lost to the condition of late-capitalism. Can it be recovered?
Capitalism is famously good at co-opting every one of our attempts to escape it. Does an effort to reclaim free, non-exploitable, unmanaged time run the risk of turning into another individualistic exercise of privilege? A new level at the top of a pyramid of needs in which the crowning achievement, after survival, material stability, self-expression and personal fulfillment, becomes permission to more or less briefly exist outside of the forces that make the pyramid? An evaporation, a sublimation, as the final step of self-realization?
Tricia Hersey, founder of the Nap Ministry, sketches a different way out. In Rest is Resistance: a Manifesto she describes how capitalism and white supremacy combine through “grind culture” to colonize our bodies and consciousness. “Grind Culture has normalized pushing our bodies to the brink of destruction,” she writes, “We proudly proclaim showing up to work or an event despite an injury, sickness, or mental break. We are praised and rewarded for ignoring our body’s need for rest, care, and repair. The cycle of grinding like a machine continues and becomes internalized as the only way.” Instead, she calls for rest as “a place of freedom and resistance.”
The extremities of exploitation that the Work Capability Assessment exemplifies help us momentarily break out of our cultural conditioning to acknowledge its injustice - we might even say: its violence – in policing disabled bodies so relentlessly. Squeezing these disabled bodies for productivity, pushing them into the last ramparts of illness or pain seems wrong to most of us. Yet we will accept unquestioningly the norm of putting able-bodies through that very same machine. Hersey’s call to rest sounds simple, but as she explains, it is one of the most difficult, counter-cultural things one can do in late capitalism. Claiming rest, not as a self-care step into renewed functionality, but for itself, goes against the material conditions of our existence – which demand an intensity of labor in exchange for survival that goes beyond the true capacity of most of our bodies - as well as the deepest tenets of our identity: the beliefs we hold and share around what makes us valuable, what makes us legitimate, what makes us worthy of existence. “Rest makes us more human. It brings us back to our human-ness,” Hersey writes. Could some of our humanness be contained in the admission of our frailty?
Disability Justice activist Leah Lakshmi Piepzna-Samarasinha prophesizes – or at least, hopes – for a Disabled Future. Her pronouncement goes against dominant positivist notions of progress, in which the future is anything but. The promise of science, technology, and self-improvement is a future without disability. We are made to dream about a time where disability can be eradicated – before conception, or in the womb, or at least made curable. It sounds hopeful: we might think of it as the aspiration to end immense sufferings, to overcome illness - a triumph of the human spirit over the real horrors the fallible body can bring. We might even think we are being particularly forward-thinking, standing against a fundamentalist Christian ethos that fetishizes life at all costs at the expense of the bearable life. But if the question of what constitutes a bearable life, a worthy life, is decided categorically by the able-bodied, by our current collective value system, it is not just the extreme of unfathomable physical pain that can be taken on by our eradication plan: every deviation from the optimal functionality of the human body and mind, seen within the prism of productivity and self-fulfillment, becomes susceptible to being targeted.
Chloe Cooper Jones’ memoir Easy Beauty is built around a discussion she has with two philosophy department colleagues in a Brooklyn bar. Cooper Jones tells them of a problem she submits to her ethics students about the principles undergirding a deaf couple’s decision to select either deaf or hearing embryos during the process of IVF. She describes the malaise that this case never fails to create in her classroom, the way the students infallibly resist her attempts to shift their perspective. “It’s cruel for the parents to force a child to be deaf,” they assert, “their life will be worse than the normal child.” If Chloe Cooper Jones expects to find sympathy in her colleagues about the difficulty of challenging undergrads’ prejudices, the response she gets is quite the opposite:
“They should be locked up, the parents, if they do allow a deaf kid to be born on purpose,” said Colin, “All pregnant women should be legally obligated to undergo testing for any kind of disability and if they find anything, they should be forced to abort. And if they don’t, they should go to prison, or have to pay a fine or something.”
The other friend tepidly denounces this extreme, eugenistic position, yet extreme, in this case, is not synonymous with marginal, as proved by the discussion Cooper Jones elicits in her classroom. We can easily see the direct line of logic between the positivist, scientific, progressive drive to ‘cure’ disability and the conclusions drawn by philosophy bro number one: if disability becomes avoidable, then not avoiding it becomes child abuse— it becomes criminal.
As much as we like to take pride in our collective 20th century triumph over the eugenics/Nazism duo and associate that victory with a liberalism inextricably tied to the free market, eugenics are actually never far from the logic of capitalism. In a world that is merciless to the disabled, where you have to, say, show up to state-sanctioned assessments regarding your bowel control and your capacity to push buttons in order to determine whether your life is worthy of being supported, where your experience of pain is considered less relevant than your capacity for labor, where your value is determined by your productivity, it can seem like an inexcusable cruelty to invite or even allow in bodies that are considered deficient, unoptimizable. But that world is not a neutral inevitability. It is a societal, collective choice.
Piepzna-Samarasinha’s oracle: The Future is Disabled, as a counter-intuitive statement of hope, or maybe a war cry, paints another picture: a social contract based on a different relationship to the human body, one which would come to disturb all matrixes of oppression:
“How does it change everything to imagine and plan for a future where we are the majority – and not as a terrible thing, but as a source of possibility and power? (…) What happens when we, the disabled margins… are at the center? The multiple norms? What would this world be like if we succeeded in flipping the world so that no one was exposed to eugenics, able expectations of normality, intelligence, productivity, desirability… and everyone benefited?”
It is a delicate exercise to discuss the way ableism affects all of us while being careful not to erase the specific experience of disabled people, who face abject discrimination and stark obstacles to survival, resources, and participation in very concrete, material, and often life-threatening ways. Seeing disability as a spectrum rather than a binary – and a spectrum along which we will all keep moving throughout our lives- is one way to negotiate this conundrum. Cooper Jones points out that to become disabled in one way or another someday is the best-case scenario for all of us – the alternative being an early death. Another perspective can come from the failure of (strategic or not) essentialism in other areas of anti-oppression work: that attempting to hold on to closed categories in the hope of avoiding appropriation or dilution often seems to be a dead end.
Many in the Disability Justice movement recognize that you do not have to be disabled to experience ableism. And just like Tricia Hersey’s claim that rest as resistance is “a counternarrative to the script of capitalism and white supremacy for all people,” the work of dismantling ableism can benefit everybody – whether they would pass their Work Capability Assessment or not.
Disability Justice activist Talila Lewis’s definition of ableism is:
“a system of assigning value to people’s bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression leads to people and society determining people’s value based on their culture, age, language, appearance, religion, birth or living place, health-wellness, and or their ability to satisfactorily re/produce, ‘excel’ and ‘behave.’”
If ableism hits disabled people directly and relentlessly, it remains inextricable from the structures of power and meaning that filter the way we view and act through the world. ATOS’ Work Capability Assessment and the self-improvement workshop that your office is forcing you to attend in order to optimize your productivity are not on the same scale of harm, yet they belong to the same discursive spectrum.
It struck me in Cooper Jones’ account of the Brooklyn Bar discussion that both of her colleagues suffer from depression. After mansplaining that she would have been better off never been born, they both admit that if they could snap their fingers and never feel depression again, they would, without hesitation. They offer this as a bolstering of their argument, yet what they do not say is ‘if I could snap my fingers and never have been born, I would do it.’ “But at least, I’m not disabled”, Colin says: his life, apparently, is teetering on the verge of being a mistake, but not quite.
Why neither of them considers depression a disability remains, for me, the most puzzling part of the exchange. Depression, according to the World Health Organization, is the leading cause of disability around the world. Over the possibility that these men used the term ‘depression’ lightly - to describe perhaps, a Sartrian existential nausea, I will pick the more generous interpretation of an internalized ableism so pernicious that the visibility of the disability is what feels unbearable to them. Depression sometimes allows a subject to mask and appear ‘normal’ in social situations in a way that Cooper Jones’ physical disability doesn’t – that is, until depression won’t allow it anymore: that is, when you lose your job, your friends, your capacity to be in and of the world.
It was when my body pushed me to these extremes, that I could not mask anymore the toll that chronic mental illness was taking over my body, that I started grappling with the possibility that I might be disabled. For years, I’d been making myself pass my own Work Capability Assessment: yes, I could walk two hundred meters, I could push a button, I could be trusted not to be a danger to myself or others without frequent supervision, my diaper would not spill – not until I got home. I could be disembodied enough, strong-willed enough, to make it work, barely but just, enough, until I couldn’t. And when I couldn’t, I looked for how I could manage myself into recovery, until I could, once again, perform enough to be admitted back into the realm of the functional, of the resilient, of the productive. I was white and economically privileged: belonging to this realm wasn’t about survival for me, it was about a sense of legitimacy, of my very right to exist. And then, one day, in Leah Lakshmi Piepzna-Samarasinha’s essay collection Care Work, I fell upon this paragraph:
“And, even more dangerous, I want to venture: what if some things aren’t fixable? What if some things really never will be the same – and that might not be great, but it might be okay?... What if some trauma wounds really never will go away – and we might still have great lives? Believing that some things just aren’t healable is anathema to most everyone, radical or not. We believe that with enough love and wonderful techniques and prayer, anything can transform. But what if some things can’t?”
What if some things can’t? The question, for a while, felt unbearable. It seemed to close the gates of the beautiful world to me. To accept that there would never not be days when I cannot get out of bed, when my body would be free of somatic pains, days when normal life is not an option for me; to accept that I would never outgrow this incredible suffering for good, that I might never get to do everything that I want to be able to do. For years, I’d felt like I was swimming to reach a shore where all my friends were waiting for me. They were cheering: keep swimming, you’re almost there! At times, it felt like I was getting so close. But what a wrong metaphor: none of my friends are dry on their feet. We are all, one way or another, in the soup.
After a few days of stewing in this rage, there came a great relief: I could come out as disabled and stop apologizing, I could stop feeling like a disappointment, for being late, eternally late, in becoming the person I’d promised everyone I would be. In getting the right to go back to bed and not live to my full potential. I could stop believing in the necessity of aborting my life after mornings spent throwing my body against the wall. A permission to keep existing, without having anything to show for it.
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Now, a few years later, I wonder what it would be like to give myself that permission without identifying as disabled. I wonder what it would be like for everyone to be able to give ourselves that permission. We have been made to believe that the world would stop if we did. Should we keep believing? But admitting to disability is not a defeat – even though it might involve anger, grief, pain, frustrated desires, and thwarted plans – it is, rather, a reversal in the dynamic between myself and the world: I am no longer trying to bend my aching, unyielding body to an exterior rubric. I am declaring it always already whole and joining the ranks of those who are demanding space for its glorious indivisibility.
It might be that our frailty saves us. Maybe even our pain. Our human, fallible, sometimes broken, limited bodies. The fact that we cannot, in fact, turn ourselves into machines and perform – that even for those who seem like they can, something will inevitably give out – something, unlike a bolt or a screw, irreplaceable. The possibilities for a different future, then, may not be found in our limitless ingenuity and relentless drive toward betterment – this dream of a more perfect humanity - but rather with a plunge into our inherent, inescapable vulnerability- our very limits. A disabled future is a shared future.
Jeanne Kay BIO