Sunday Bookmarks #4
Happy Sunday all, a week of (intermittent) sunshine, and longer evenings have made the world feel slightly less heavy, so the obvious answer was to read and consume hard-hitting material to make up for it.
READING //
Disability Visibility, This book is everywhere, and by everywhere I mean the small echo chambered corners of the internet I reside in, with mostly like-minded and socially aware individuals who like books. I am glad about that, it’s important that the book is read. It is an anthology of voices, of disabled folks, often those marginalized at multiple intersects of their existence. We hear from trans wheelchair users, a Black woman living with Cerebral Palsy, a deafblind person learning to connect with a new guide dog. It is beautiful, it reflects part of my reality, so why do I feel so sad when I read it? I think this may be it:
‘When you are waiting to be healed, you reject a lasting condition’
(June Eric Udorie, Pg 56)
I have been thinking a lot about the differences between identifying as chronically ill and identifying as disabled. I started listening to this book on audio back in December, my health was what I thought was rock bottom, little did I know where I would end up in January, and every time the narration started I felt overwhelmed, unable to cope with the jargon of illness, the flairs and the autoimmunity, the consistent references to disabled life. That was ableism talking, and it still talks now, sick or not, we were all raised in a society that values disabled lives as less, that views them with pity or sorrow, that gives them little credit outside of inspiration. In December, I didn’t want to be one of them, I didn’t want to be pitied, like I know I have pitied others in the past. Last night, reading ‘Ehlers Danlos Syndrome,’ written on paper, from a fellow disabled person for the first time, I didn’t feel pity, I felt seen, I felt solidarity, I felt like I could identify myself as disabled, because look, someone else is doing it too. That doesn’t mean it’s easy, there is so much internalized ableism to unpack, the ‘you are not sick enough’, ‘you are too privileged’, ‘you are too lucky’ to identify as disabled, but I am working on it. Some of my illnesses can be well managed, some may go into remission, but as far as I can read, EDS will be with me for life, it affects every part of my body, all the bits that hold my muscles and bones together, it is no small disease, so why do I want to hide it?
The International Booker Longlist was announced this week, and although I will not be committing to reading the entire list (that sounds more like a chore than a hobby) I have my eye on a couple. The Pear Field, set in post-soviet Georgia, looking at a school that prides itself on neglect and damage towards the intellectually disabled, sounds as though it will be in equal parts harrowing and infuriating, the setting potentially reminiscent of the much loved, Nickel Boys by Colson Whitehead. Partial to a short story, Argentian author, Mariana Enríquez’s collection, the Dangers of Smoking in Bed, sounds as if it may air on the side of the spooky, with reference to witches and ghouls, however, the same blurb mentions illness and female bodies, so that is usually enough to entice me. Minor Detail is the only book that was already on my shelves and has received mixed reviews so far but I will be picking it up regardless, as my desire to read more literature by and about Palestinian people continues.
WATCHING//
Next month, Patrick Radden Keefe, author of Say Nothing, a true story of murder and memory in Northern Ireland, is releasing his next non-fiction text. Say nothing was a comprehensive look at the IRA, the troubles and the residual damage those years of bloodshed left. In his next book, he pivots to a contemporary crisis in the USA, a place he currently calls home. Empire of Pain, out in May, he documents the history of the Sackler family, the ostensibly philanthropic people who pledge their millions to art galleries and universities, between the Louvre and the MOMA. Beneath their charitable deeds, they were also responsible for Oxycontin, the prescription drug that sparked the drug epidemic which has plagued hundreds of thousands of lives over the past 30 years. Coming in at almost 800 pages, this is sure to be a detailed play by play of how the Sacklers developed and marketed pain medication, to gain huge profits, before leaving a population high and dry, addicted and out of luck.
As I wait for the release, I binged the Netflix series Drug Lords, eight 45 minute episodes highlighting some of the world’s most notorious drug criminals, their paths to success and then inevitable demise. Although the episodes lean heavily into ‘USA is the good cop, the rest of the world are heathens’ rhetoric, I was interested in the role such figures as El Chapo and Christopher Coke played in their countries where, much like the Sackler family, residents had been left high and dry by the state, so figures stepped in to provide electricity, education and primarily, work (albeit of the illegal kind), to communities that are in need of said support. That is not a justification for the brutal bloodshed these drug lords manufactured, merely an opportunity to consider the ‘why’ in these situations, when we are often presented with one side of the war of drugs argument. I then unsurprisingly, fell down a youtube rabbit hole, and watched the following documentaries, trying to figure the damage done once the drugs make it across state lines, and into the hands of American users, The Opioid Effect Fentanyl: The Drug Deadlier than Heroin. The fentanyl drug epidemic in North America, all on VICE / Youtube, make for sobering watches but provide yet further context for Radden Keefe’s book, in the way opioids led so quickly to cities overcome with addiction and out of supply, and we can so easily see how residents had to turn to other drugs to stay alive.
Along with the rest of the liberal woke internet left, I settled down one evening to watch Seaspiracy. I don’t eat fish, I could say because I’m environmentally aware and morally superior, but really I’ve always been grossed out by its smell and texture, you couldn’t pay me to consume it, even if it was ethical. These ‘shock docs’ (see also: What the Health, Cowspiracy), follow a similar formula each time, young, usually fairly attractive (Down to Earth with Zac Efron anyone?), middle-class people, take us, the unsuspecting viewer, on a personal journey of self-discovery as they uncover the woes of the planet, the injustice of the animals and pledge to do better, eat better, and ask us to do so too. At this point, I should probably point out I’ve been vegetarian for almost 10 years, vegan for 4, and now I consume eggs, so I’m a vegan -1? before the animal rights brigade comes for me.
Granted then I am maybe not the target audience for Seaspircy, the majority of my friends are ‘environmentally aware’, most are vegetarian or pescatarian, and I rarely am in the company of people eating beef, whether that is health or environmentally driven, so I wasn’t in need of my eyes opening, as the documentary presenters may suggest, but he presented a seemingly one-stop solution to saving our planet, just like they told us to stop using straws, now we must all just stop eating fish, simple right? Well, the removal of straws harmed disabled people, and now the suggestion that eating fish is morally wrong ignores historic and culturally significant traditional fishing practices, as well being blind to all socio-economic factors, which seems to be the standard in any environmentalism conversation that wants to tackle food practices. He was quick to blame those who caught whales or dolphins, as part of the problem, but is it not the capitalist machine that placed our oceans in danger? The fish that are caught in the Atlantic, but shipped to us, here in Europe, ramped up demand so much that sources are depleted, not those men in open canoes attempting to feed a family.
The climatic shots of blood pouring into a cove in the Faroe Islands, men heaving great animals of beauty from the water, was meant to leave us feeling enraged, to hop on and support Sea Sheppard, and sign a petition to end whaling. One of the final interviewees posed a question back to our presenter, he says people come here and tell us killing a whale that feeds a family for months is wrong, but they eat two salmon, or two chickens, a day, is perfectly acceptable. He has nailed it, there is a desire for us to believe, that eating some kinds of animals over another is better, and although he debunks the labels of dolphin-safe and ocean approved, his arguments are resting on strawman tendencies, the problem and the duty to fix it, does not lie with these small communities feeding themselves, it is the mass production, it is the capitalist machine we should be mad at, why film the fisherman at the market? they are merely exploiting an area of capitalism to make ends meet, try knocking on John West’s door instead.
The presenter seems to have fallen prey, to that ever-present tone of western superiority, how dare you eat a (insert animal we find cute/important), that is barbaric. The argument always returned to, if the oceans die, we will die, centring on human needs, once again. The earth is not, per se, fussed with the continuation of any one species, and life will continue regardless of whether humans are around or not.
LIVING WITH //
The pain. We are built to resist pain, our body alerting us that something is wrong, sending a flare-up, SOS, asking to be rescued. But what if we live in pain? Chronic pain is just that, daily, never-ending, permanent. This week I made a pact, I wanted to make peace with my pain. I do not for a minute believe gratitude and acceptance will take my pain away, but I want to stop fighting it, I am tired of it.
For every pill I pop, there’s a side effect, pain reduction but increased nausea, lessened joint ache but likely constipation, I am not a stranger to the medicine cabinet and shake my head at those able-bodied folk who proudly declare they never even take paracetamol. However I am increasingly more aware of my rising tolerance and my body’s resistance to prescription painkillers, I don’t want to be reliant on them daily, but I also am afraid of the pain, of the way it debilitates me, the dark rooms I must lie in, the bathroom floors I sink onto.
This week I tried to fight the fear instead, to see the pain coming and walk into it anyway. This is not about resistance or a battle, in fact, I despise these terms attached to illness, ‘fighter’,‘warrior’, there is an implication that illness is a case of survival of the fittest, and if you aren’t getting better you aren’t trying hard enough. That simply isn’t true, whether we discuss chronic pain, depression or any other ailments, the will to survive is not what will fix you alone, and it is damaging to suggest so.
I wake and often immediately feel pain, I scan my body for the places it radiates from, and construct a plan of attack to beat it - look, there I am, using the language of battle again, it really is ingrained in us. I reach for heat or ice, I survey what meds are strewn across my bedside table and fumble for a glass of water. My body feels with dread and my mind whirrs as I redistribute my tasks for the day, decide what can be postponed and what can be tackled from bed. I panic, my heart thuds and my tremors begin and I feel like I’ve failed, another day lost to the fear of pain.
I have tried this week, to wait a moment longer, to feel the pain and let myself sink into it, we are programmed to fear the pain, so it feels as though I live in constant threat. Often referred to as ‘fight or flight’, bodies like mine, have nervous systems set permanently in panic mode, they are constantly trying to work out what is wrong, why does it hurt, why won’t it stop. In these new moments of waiting, before making decisions, I have been meditating, now hear me out, I know I said gratitude won’t take the pain away, believe I am a sceptic too. Honestly though? It has helped, affirmations of ‘I am safe’ ‘I deserve rest’, permeate my brain cells, circumnavigating the part that is telling me to ‘get a grip’ and ‘move on’. I feel more secure in myself, I focus in on the epicentre of the pain and imagine it dissolving, the harsh lines that surround it seem to soften and my heart palpitations slow, and thudding in my ears quietens. It provides relief, albeit temporary, and maybe I still need my pills later in the day, but this practice is me trying to tell my body, I am not afraid of you, we do not have to fight.
Catch you all on another part of the internet,
Hannah