Sunday Bookmarks #11
Happy Bank Holiday all folks in the U.K, and I have it on good authority that it’s a holiday weekend for those stateside too. This week has truly been a rollercoaster. Some of the writing here was written much earlier in the week following a hospital visit amidst insurgent feelings of hopelessness. I find it so much harder to publish my feelings and experiences when they are so negative, after the event. I feel as though it was all in my head, and I truly could not have felt as bad as I said that I had at the time. I think that stems from years of medical and emotional trauma that so many of us who are sick suffer with. You spend so long trying to convince yourself you are ok and being convinced by doctors that ‘it’ll pass in time’. When you hit those lowest lows, it must just be you being dramatic. So publishing those feelings in retrospect is partly me reclaiming them, reminding myself I can have both horrendous and heartwarming days, hours, minutes even, all in a week.
READING //
This week I was taken in by Molly McCully Brown’s debut essay collection; The Places I’ve Taken My Body. She documents her year in Europe on a writing fellowship, navigating through Italian cities and London streets. The body with which she navigates those spaces would be defined as a sick one, a disabled one, a body in rebellion. Molly lives with Cerebral Palsy, a whole-body condition developed from birth, impacting most notably her movement, dexterity and ability to walk. Molly uses a wheelchair; If you’ve ever spent time in an ancient European city, you’ve probably tripped over a wonky curb, stumbled up old winding steps and pushed your sweating body against a tall brick wall, to let another set of tourists pass by in a narrow ally. You may have not spent time in a wheelchair, but casting your mind back to those trips, maybe you can see that those places are not compatible with a wheelchair. It also seems that their old age is their excuse, much like a racist grandmother no one wants to bother.
“When you ignore something, you see it, still, in the corner of your vision. You know it is there you just refuse to turn your head. This is a tactic I take all the time with chronic pain, I feel it but I decline to attend.”
Molly expresses guilt for winning a fellowship, taking herself to places where leaving her apartment feels like an almighty battle. In turn, I felt immense anger at the world that made a talented and young writer feel like the inaccessibility of those places was her problem. It is no longer viable to use the ‘preservation of historical monuments’ or ‘the ancient infrastructure must remain authentic’ as excuses for excluding a significant number of people from accessing public spaces. Not when brand new shopping malls or luxury hotels regularly spring up in a matter of months in those same places demanding that their historical authenticity is uncompromised. Just like expectations for people to work full time in an office when disabled employees are told they are letting the team down by not attending in person - that doesn’t fly either when we’ve just spent a year all working from dining room tables. This change happened almost instantaneously when suddenly, everyone's lives were in danger, as opposed to ‘only’ the chronically ill or disabled.
My friend asked me the other week whether it is illegal for restaurants and bars to be inaccessible to wheelchairs. Oh, I WISH we lived in a world where that was true, and actually enforced. There’s been a number of online campaigns targeting local councils who, through new COVID bylaws, have pedestrianised roads for outdoor dining, swathes of tables now covering disabled parking bays. A couple of weeks ago I visited a bar with friends that was, on the whole, pretty accessible to me, in a wheelchair, being pushed by my friend. However, it did involve a large bump on entry, something I would not have managed in a self-propelled chair, and the disabled toilets were also at the back of the kitchen store cupboard. Fine I guess, but according to friends, the regular toilets were lovely, so it seems double standards reign supreme. After all, shouldn’t we disabled folk just be glad to be outside at all?
Molly’s book reminded me that we should not continue to accept half-hearted attempts at accessibility from local, regional, or national governments. Disabled people spend £80 billion a year in UK shops and restaurants, so why aren’t we treated as full-paying customers?
As a previous reader of Deborah Levy, I feel it important to signpost you to a recent article Jasmine has written, on the republication of an older story Levy wrote in which she mocked and mimicked characters of Asian Heritage. I will not attempt to unpick the levels of wrong with Levy’s writing and the magazine’s choice to republish it. It will, in fact, has already been levied (no pun intended), that the old age of the story makes its content excusable. To that I say, there were anti-racists living in the 1980s (and indeed the 1880’s…) and even if we offer her the benefit of the doubt, her non-apology and lack of tangible remorse, speak volumes of her whiteness. Every week it seems authors with some level of privilege are clamoring to show themselves as hateful or ignorant or often both. It is, of course, up to every individual to decide what they consume, support, etc, etc, and much like food choices or charity donations, it is not a game of one-upmanship, who can be the most morally sound consumer of culture. However, the suggestion that conscious readers will soon have nothing left to read because there is a diminishing number of writers who are not bigots, racists, misogynists, and so on is both alarming and preposterous. Aside from the fact that this pays no heed to the sheer volume of books published every year, it is also simply a straw man argument for those who want to continue to consume art and literature created by people who have done and said bad things.
I know just by looking at my bookshelves, my endless mental list of books I would like to buy, and continuous back catalogues of beloved authors I mean to get to, that I am at no risk of running out of things to read. In fact, to my own disappointment, I doubt I will read everything I want to before I die. So even if you have to strike a few authors off your list, there will always be plenty more fish in the sea.
WATCHING //
As I have said before, my television consumption comes in fits and starts. I can be without it for weeks or even months, and then binge for a week and forget about it as quickly. I am currently experiencing the somewhat unique joy of second-hand enjoyment when a friend decides to binge a series you have previously loved and felt invested in. It is almost akin to rewatching, without the wasted hours or boring lulls of remembering scenes play by play. In my case, it is Bling Empire, a reality tv show centering on a super-wealthy Asian American community in Los Angeles. Actually, the word community may be a stretch - there are plenty of bar fights and heated arguments - but they do genuinely (from the 7 hours of heavily edited and partially scripted footage I have watched) seem to like each other (for the most part).
Alongside fearsome WhatsApp interactions ensuring everyone watching Bling Empire is also team Ana, I also managed to fit in yet another Netflix true-crime docu-series. Murder Mountain, released in 2018, partially follows a missing person case while simultaneously exploring the outlaw and vigilante culture of Humbolt country, California. The area was originally set upon by Hippies and Vietnam vets alike, setting up weed farms, cultivating a community of those who sought a life outside of popular convention. Fast forward to the 2000s, we see the area commercialised for the illicit drug trade, and a huge number of missing persons and homicide cases put the county on the nationwide radar, thereby becoming dubbed ‘murder mountain’. We flash between the original growers, some from the first hippie colonies, and more recent residents to the mountain, to undercover the stories behind the headlines.
Most interesting for me were the present-day interviews, particularly those conducted with women who were close to victims, as well those with families and growers who were attempting to legalize, but hit multiple bureaucratic blockades in the process. It shone a light on the move from illicit to licit cannabis in the US, as a complex process that isn’t best serving the ethical growers or the end-users. The weaving together of a single murder case which ensnares the viewer in pursuit for answers, with an interrogation of the wider socio-political implications of cannabis growth and legalization, made for a pretty gripping yet informative series.
LIVING WITH //
I feel so close to the edge. I want it all to stop. The noise to quiet, the movements to cease, the appointments to pause, the commitments to be put on hold. I want out. I want the constant distractions to be all I have to keep my mind in check. My sicko friends sometimes ask in amazement, how is it that you do so much? The able-bodied folk uses it as ammunition to assume I’m not really sick at all.
I do these things, this writing, those videos, these book reviews, to keep my mind elsewhere. Before I got this sick I was a ‘top of the class, anything less than an A I would cry, need to be the perfect’ kind of person. After getting progressively iller in the last year, I am now left with this void I have to fill with both time and mental energy. My brain now moves faster than my body and it gets miserable almost instantly without something to cling to.
This week I spent 3 hours lying flat in a hospital bed receiving the first dose of IV treatment, trying to combat this chronic and ongoing tiredness that drowns my daily life. It was 3 hours I couldn’t read, one arm was occupied by a needle and a drip and the other had gone numb. There’s a no phone or bluetooth policy on the ward, so no audiobooks either. I had other patients to keep my company, the natter of birdwatching and favourite Dorset beaches was my background as I tried to doze but I was fighting a losing battle with a brain like mine.
This sounds as if I am making a bold self-entitled claim, that my intelligence is just so large it cannot possibly be shut off. In fact, it is the opposite, It seems my mind lacks self-compassion and awareness; Physically I am unwell, my mind can see my body, lying stiff in a hospital bed, but it cannot seem to fathom that it must now be quiet too, just let me rest.
It seems I am stuck somewhere in the middle, trying to juggle busyness that keeps my mind out of dark places, and the physical rest that I need as I attempt to heal some of my most pervasive symptoms. I am not waiting to get better, to get back to that type A, top-of-the-class way of living. I would be waiting forever, since there are no cures, in some cases for me, only further progression into worse-off places. So I am left trying to balance the two, which often feels like an impossible task. I can be in less physical pain and deeper depression or relieved of some symptoms, and more miserable than ever, it feels like a losing game.
Catch you all on another part of the internet,
Hannah