Seasons In the Abyss
Summer 2019 In ‘Disability is a Benign, Oversubscribed Lifestyle Factor.’
Something has happened to the way we talk about disability and to the levels of disability denialism people are regularly exposed to. I have never been one to gatekeep disability, to act like the esotericism of a diagnosis is enough to shut people out of a conversation about disability or to relate their lives to my own. I have watched as government policy makes life worse for disabled people on a daily basis and made sure to link my criticism to the broader critique of what it is conservative rhetoric does to vulnerable people. There is no twenty minute Medium article where I call out friends and colleagues on the left, the socialist left, the intersectional left for pushing any disabled people I know down the list, as intersectionality so often comes to resemble on the internet. I’ve spent my whole adult life beknighted with at least some of the patience required for the people around me to understand the nuances of interacting with disabled people, so that they might better understand the extent to which they orbit lives which greatly resemble their own but are substantially more difficult than their own, not the reverse as the perception seems to be. But right now I just want to punt the whole fucking thing into a skip.
Many young people have died unnecessarily, in a way that’s unprecedented and in a frequency only precedented in the western world by the suicidality visited upon the international trans community. This spate of young, often violent, often preventable deaths coincided with Trans and NB people’s time at the forefront of cultural discussion, an ongoing period which detractors still insist consists of people from a degenerate corner of the LGBT community appearing and insouciantly demanding to be taken seriously without argument. The fact of the matter is that a cursory glance around trans social media will show it bending itself into pretzels in order to stop its complete and utter implosion, such are the frequency and veracity its of internal arguments. If I can relativise once more, there can be similar levels of scub — pre ordained subjects of much argument and derision — to be found in disability rights conversations. How much do we let the ‘ableds/normals/muggles’ know? Can there ever be healthy gatekeeping? To what extent to we want to deride nationalised healthcare due to our own proximity to the myth of state competence? All great fodder for Medium’s publishing tools. The problem right now is one that carries with it such lethality as to not allow the people it’s affecting to live long enough to see their predicaments ameliorate or even their arguments mature. So just as the other groups I’ve mentioned above have had to restate why they are vulnerable and have most effectively done so by pointing to the common ethical grounds of the society they want to change, I’d like to offer dead women and children as the subject which will define parlance across the social and political spectrum. I’d like to but the rhetoric, as you may have already surmised, is complicit in the abuse.
I’m going to discuss a few cases here, where this new view of disability has taken lives and try to backtrack to how and why. I am not in possession of a solution at this stage. This is another commonality. Far be it from any serious issue to fail to include a celebrity case as a precursor for how we should feel about said issue, summer 2019's spate of deniable deaths began with a talented young man on the cusp of a lifelong carrier. On July 6th of this year, Cameron Boyce, TV star and Disney Channel alumni died in the midst of an epileptic seizure, for which he had been given ongoing treatment. Perhaps predictably, the exact nature of his death was passed over in favour of speculation on how his family and members of his entourage were feeling, with the entertainment press quickly moving on to how his posthumous roles would be handled. It seems the moratorium on tabloid reporting usually afforded to grieving families had bestowed the privacy the Boyces needed and rightfully so. This alone could apologetically be taken as the reason for the slow news day tone of the coverage, with many outlets graciously accepting a statement from his family rather than pursuing the delayed autopsy statement given in more complex medical circumstances, that is to say, given to unexpected deaths that are caused by them, to use the coroners exact terms. The problem is, though all parties involved were, at the time of writing, perfectly well behaved, the disappearance of Mr Boyce’s death down the news schedule reused and further solidified the brass template for reporting on deaths by disability and chronic illness in simple, proscenium, unemotional and incurious terms.
I should explain at this point that the case of Cameron Boyce is neither the patient zero for a celebrity’s death overriding the bizarre, capricious circumstances of that death, nor is it the case which invented the passive language with which we talk about disability and chronic illness in people who look well. The are several hundred thousand Cameron Boyce’s across the world with his sub-diagnosis alone, many of them in abject, painful circumstances and many of those people looking to how their affluent, western counterparts live for a blueprint for quality of life. Should that fact raise hakkels in its implied condescension towards people in the developing world, consider firstly that emulating celebrities is good enough for enormous swathes of the non-disabled population all over the world and secondly that the mere anointment to what can barely be called national levels of celebrity has been used as an excuse to appoint celebrities to ambassadorial positions within disability charities and causes with no other rhyme or reason or merit.
Away from cameras, however the burden for esoteric, idiosyncratic understandings of a diagnosis still manages to fall to absolutely bloody no one except the people suffering from them and their carers. Away from, what I hope isn’t insensitive to say, a euphemistic level of inquiry into Cameron Boyce’s death and away from his exposure (and, for our sins, his levels of privilege) an 11 year old girl in Washington D.C. has successfully petitioned for the use of a marijuana derivative in her inhaler, to curb her symptoms by a factor of multitudes. Permeating local news, where Cameron Boyce’s death managed to do so at an international level, her story fell into the hands of Fox’s local news networks, where it caught my attention. The handful of stories about this young lady’s treatment have already resorted to clickbait titles and highlighting the headstrong role of her black mother in proceedings and the involvement of a democrat politician in seeing her letter of petition through to higher legislature. Again euphemism, again glazing, again the people doing the reporting and forming opinions choose moral pontificating over ethical or intersectional talking points. This time, the glaze over Zoey Carter’s narrative omits, (but for what’s buried under paragraphs and jpegs and advertisements deep in the ariticle) the fact that her medical marijuana is reducing her seizures from 64 a day to just a few a month. It glazes over the fact that she has the same congenital Epilepsy diagnosis as Cameron Boyce. Her subdiagnosis however is that of the capricious and unpredictable (by the standards of fucking epilepsy) sub diagnosis of Frontal Lobe Epilepsy. Any local news writer worth their marijuana inhaler who’s taking the story of a young black family changing the legislature for the better in their neighbourhood and is unable (whether through ignorance or insincerity) to link it to the thousands of stories of ghettoised families in neighbouring Baltimore and Philadelphia being exposed to lifelong neurological symptoms by redlining policy in those black cities can only be mustered to excuseability under the shrugging exoneration ‘It’s only Fox’. That doesn’t change the fact that the political and media coverage which stood a chance of reaching all the way over to people like me in the wider disability online discussion made no effort to refute the clickbaitability of the story. It doesn’t change the fact that no one studying Zoey Carter’s case managed to link it to the untold thousands of black adolescents who will never be free of their symptoms nor have access to what is as near as possible to a functional cure. And it doesn’t change the fact that magnitising the story to her background and to a piece of her medical equipment doesn’t do anything profound except to expand the all encompassing zoo of ‘look, that person is in the handicap space but they aren’t a drooling caricature of an 18th century lunatic strapped to a black airport wheelchair, weird!’
I don’t care about gimicks like the million to one odds that a politician orbiting the case (for they always orbit the case) might be linked to a 2020 candidate, or that Carter might be corralled to into posing for a duo of money shots in front of some graffiti and in some Reagan era brutalist Washington corridors. I don’t care how she looks. I’m just unable to stop my eyes from swivelling towards the piece of A4 she’s clutching saying Rare Diseases Week On Capitol Hill.
‘What’s that, sweetie? Your diagnosis has killed before? Death could even be characterised as a relief from symptoms as abject as yours have been in the past? People who are really young and fit and photogenic die from it? I’ll tell you what that is, puddin’! It’s rare.’ No. Perform a don’t. Execute a stoppn’t on trying to reconfigure perceptions of a medical situation which hasn’t even been adequately explained, never mind treated. The euphemistic perceptions of the illness will infect the public and seep back into healthcare most vividly at the point at which the most dramatic forms of applied medicine regularly meet the public, the accident and emergency room.
On May 6th 2016, Massimo Mezzatesta went to an emergency room in Toronto with persistent, agonising back pain, which had spent the past several hours migrating across his body and through his left arm. He absorbed the wait, the derision from triage staff and the general disbelief that anything could be wrong for three hours before returning home. He and his mother were humiliated. They would return hours later with a flushed, semi conscious Massimo immediately rushed to a room where he would enter convulsions, then cardiac arrest and then die. ‘I walked into a hospital with my completely healthy 15 year old son and not even a couple of hours later I walked out with my son in a body bag.’ His mother Sandra would write, memorialising him in an indescribably cruel reversal of the family duty of eulogy.
Massimo was fifteen and he looked really well, great, fit, fresh, not sick, young, strapping, pick a number from the jukebox list. With no more songs, Massimo could have had a dramatic, nay basic, intervention in his condition which would have saved his life. No cure was necessary, nor was anointment to the DSM or to an international epidemiological meta study, nor the approval of two doctors who will cosign the permission for his abortion papers, nor to just up his reps and down his rest time during his weekly crossfit session, not even surgery, arguably. None of the gatekeeping performed by the medical profession helped, all of it contributed to his death, categorically and undeniably. But don’t worry, the excuse proofing tactic of waiting for diagnosis or some kind of settled science (on a young man who’s condition would never be settled) meant that a definitive statement about the severity of Massismo’s condition was indeed made, in his autopsy report. It identified Vascular EDS: Massismo’s soft tissues were congenitally weak and their inability to develop around the cardio vascular process we use every day made his heart considerably less robust. That I have been unable to complete that description without the use of adjectives cuts to the heart of the problem. ‘Yeah, Headington, it’s a dead kid but what kind of dead, like leukaemia or shot by gangbangers or?’ Order your hierarchy how you want, it will never be invalid as vast swathes of both the media and the medical profession continue to trip over themselves making alarmist rumination over how close or far a diagnosis is from cancer, or how likely a behaviour or environmental factor is to cause it. All diagnoses must bow to the king, to accept they’re not really real until they’ve been told just how closely the do or don’t orbit the centre of the capitulationist empathy rationing policy that’s so often and so rightfully lessened in radiology and urology departments the world over. Doctors have been told there’s no problem in rationing treatment because all these people can’t really be ill (unless they cross the carcinogenic rubicon) but if so few people are ill, why must they ration treatment? Several, subsequent, punishingly conservative administrations in several of the european countries which lead the way for socialised or semi socialised healthcare have compounded the issue into a cube. Bleeding out so much empathy for so many patients that so few medical personnel have it any more. In the ‘States meanwhile the motivation for folding compassion fatigue into your professional persona is pretty fucking obvious at this point. It strikes me that the system which failed Massimo was a synthesis of the two models I described above. I wonder if it’s disingenuous to say that it only seems to have doubled the ignorance that each of the two has fostered, in this case.
The depressingly, enragingly usual arguments around austerity measures and historical epidemiological failures perfectly describe this phenomenon but a solution can’t be approached until we change the way we think about disabled and chronically ill people. Consider that, when unbroken, the media command immense power over on the other side of this feedback loop which tells us it’s the height of settled science that someone should ‘look’ sick. It’s alienated people who are that and people who aren’t and the spiking levels of alarmist bullshit it puts out into society has bounced off a mirror of pseudo science and missed all the people who are going to die young because of mystical maladies with latin names. There is an energy in the wider public for these health concerns it’s just channelled through the fleet street pipeline of whether or not coffee gives you cancer or whether homeopathic medicine will finally work when it’s in a crystal instead of a pissing bottle of Evian with the label peeled off. I can try to reassure regular people that a change in attitude will interdict this but as long as proper consideration how disabled people are going to be carrying themselves is being appreciated and described by the minority, like a witch doctor reinterpreting the brays of a trapped goat for a torch wielding crowd, there is no motivation for the mountain moving acceptance of the HIV positive population which was hoisted into view over the course of more than a decade — to give an example. Before we condemn him, though, what is regular guy to do? He is beset by alarmist clowns to the left of him and dispassionate, late capitalism ridden jokers to the right. The former group have made their own monumental attitude change in the form of Anti Vaxx, which this year removed the protected status of the UK from measles in a catastrophe unprecedented in the western world — but that’s because we never stopped AIDS in the first place, eh? As for the perfectly well meaning GPs and triage nurses and ambulance drivers attempting to bottle up resources for a particularly cancerous or arrhythmic rainy day, please don’t allow newspapers to dictate your level of inquiry or — however indirectly — your ability to protect children. If their ability to do so sounds farfetched, consider that this is, in the UK at least, how we ended up with the Anti Vaxx movement in the first place.
Without researching any additional cases for this piece and simply writing about those which came to my attention personally or through algorhythmic osmosis, summer 2019 took four disabled people I knew.
Still, if a certain viral tweet about an ambulatory wheelchair user enjoying Disneyland is anything to go by, there’s nothing to be improved, no level of nuance to the garnered, no knowledge to be divined. I must say it made a polite interlude to the casual ableism which infests social media on a daily basis — relegating, as social media so often does with what content appears on it — all of the diagnoses your might see on the street to a lifestyle feature. As these habits persist, the families of Massimo Mezzatesta and Cameron Boyce watch paltry, clickbait ready pieces of pattern recognition about the design choices for the new Paralympic games mascot or how many carcinogens can theoretically be extracted from melted plastic straws usurp real public health science, misdirecting progress into incalculably broad, presumptuously simple patterns with no material change, like seasons in the abyss. Discontent with this situation functions as a fairly strong argument for including even the most illiterate in society in discussions around disability, where in practice our frustration, whilst exhausting isn’t lethal. Can the medical profession at this stage honestly say the same thing? The work before us seems insurmountable due to it being set within a system which is complicit in the abuse. Try to remember, though, it will take the simplest of changes to remove almost all lethality from the equation.