Hey all, another month passed and nothing new to report, a lot of pain this month, some rejections, many days lost to bed but some more frequent ones spent with friends which continue to tide me over as the pain comes back around. Some new, quieter projects I have be working on should come to light in May, so look forward to those, for now, this is what I am reading and living through:
READING LONG FORM // I Chose Elena
I was laying out the foundation for a book review essay the other day and began to explain the lens through which I view all books: that reading is entirely subjective, based on the experiences each individual brings to its pages. This rung truer than ever as I lay awake at midnight, following a confirmation of my next endometriosis surgery, Lucia’s book lit on my phone screen.
I choose Elena is a book about trauma but more precisely it is about the ways trauma manifests as a disease in young women who are shamed into not seeking help in the aftermaths of assault and violence. She talks of early experiences of sexual assault, life as a young gymnastic hopeful and worlds crumbling around her as her body, as Bessel van der Kolk says, began to keep the score.
“. My legs shook for days. I lay in my room and wondered how I could have done something so reckless despite knowing how badly it would hurt me.
But this was more than a confused evolutionary reaction to danger; it was a form of self-harm. I didn’t put myself in that situation in spite of how much it would hurt me, I did so because I knew that it would. I was so ashamed of my past that I punished myself by recreating it.
Trauma research has proven the desire for ‘re-enactment’ in survivors. This means that people who have been traumatized and unable to escape develop a neuropathology in which they become attracted to situations that replicate their traumatic experience.”
Lucia and I share a diagnosis and to read her precise expression of the violation of surgery was a perverse comfort as my own dreams are currently being taken over by memories of my last hospital stay, and fears of my next one.
She explains that for many with chronic illness, surgery itself is trauma. The moment you awake in a ward, paralysed from medication, often ready to vomit from the renewed pain. There is sheer panic in the disconnect resulting from paralysis, something that occurs for me, outside of hospitals too. The sudden loss of feeling, the buckling of knees. It leaves you open to more violation, helplessness, without voice to express the ongoing suffering. There is cruelty in being out of control for all the wrong reasons, being on another planet from intravenous pain medications, but no party to attend, no one to dance with, just moulding hospitals walls and the impending pain of it all wearing off.
I chose Elena is visceral in its description of medical institutions through the eyes of those who resent the time they spent there. There is an alternative door that long term sick people walk through when they are returning to the halls where they have screamed and cried and asked for help, often multiple times in the same month. That door is far less welcoming, harder to keep pushing open - it leads to medical avoidance, waiting it out at home, hoping it’ll all blow over. Once you decide to face the door you are met with eye rolls and faux sympathetic closed mouth smiles, you are back again, not sick of us yet?
Knowing what is coming for your body but proceeding anyway, takes a certain guts if not delusion, belief it will be better this time.
“So in a truly cruel irony, my inability to voice my trauma led me to do diagnostic surgery after diagnostic surgery, each time causing further retraumatization.
Since being diagnosed with endometriosis and Crohn’s, I have had to undergo five surgeries to clear out the disease. Each of these was profoundly invasive. A disease caused by trauma for which the only known treatment causes trauma.”
READING // SHORT FORM
I am in favour of light relief, and my weekly joy is currently provided by Adrian Chiles, a British treasure, A man for reasons not clear to us or him, has a weekly column in a large national newspaper. Once you have read “Having a quiet drink, I eyed a group of lads nervously … and then I saw their man bags” followed by ‘I have one question for delivery drivers – do you need to use my toilet?’, you can read, in an almost ultimate delusion of internet zeitgeist, an American GQ profile of him by writer Gabriella Paiella. To no one’s surprise, his articles are not meant to be as funny as we find them.
David Opie over at Digital Spy penned one of my favourite kinds of cultural reviews. Discussing Heartstopper, the show everyone has heart eyes for right now (except me because I am late to everything). I love to know how a piece of art moves someone. That feels more humane me, and continues to spread an understanding of why everything we consume is subjective.
Finally a couple of specific pieces you can find in the stacks of newsletters:
Lucy Webster, fellow disabled journalist and wonderful person in general, expressed the thoughts that circle my head many nights of the week, on pain, the kind that never goes away:
“It seems my brain has priced this pain in as the cost of doing business - the cost, really, of existing in a body for whom the world is not built. ‘Of course I’m in pain,’ I think in the morning, as I eye up the wheelchair I am about to spend eight solid hours in; ‘what’s the point in trying to fight it?’ This attitude would seem to make me the paragon of acceptance, but in reality the point of trying to fight it is blindingly obvious: I would feel better”
From The Desk of Otegha Uwagba, written by, you guessed it, Otegha, is a monthly-ish personal writing and observations on journalism amongst other cultural realms. This month’s letter on: Bad Faith Journalism, was an enlightening read, whether you write in the industry or not. She explains the cult of journo twitter (which is as much of a bin fire as the rest of leftist twitter) and why ‘punching up/down’ is a poor excuse in and of itself. It also poses further questions on my own writing and increasing reluctance to involve myself in opinion writing, for multiple reasons Uwagba noted, as well as trying to understand its value when it appears as flash in the pan as most of those reactionary type stories do.
(CRITICAL) THOUGHTS IN PROGRESS //
To follow on from Uwagba’s piece, I thought we could partake in a little constructive criticism of another’s work here too. To be clear, my grievances with the below piece mostly lie with the editor and the team who pushed publish, not the writer, although their ignorance is giving me a lot of ableism to be concerned about too. Platform by Metro is best known for publishing new voices, perhaps people who do not intend on pursuing a journalism career, who just want to share a single experience with a wider audience, alongside voices not often heard from, in this case a Sex Worker, definitely an important point of view to understand. However, with lack of experience, comes an editorial requirement to employ a more acute eye, someone to look over the story arc and ensure it is covering itself in terms of narrative sense as well as ethics. In this case (and not for the first time in recent months) this publication has failed to consider the views of the people the article is discussing.
“I’m an escort who specialises in sex with disabled clients”
The piece opens with the author discussing a new client (whose specific disability is already outlined - because we must know exactly what kind of disabled person we are dealing with here): “if this were to work out with Rob, it would really make a difference for him.” - a difference to what I am wondering, his ability to feel fulfilled as a human now he can access intimacy? Improvement to his sad, disabled life, now he can have (pay for) sex?
They also use the term ‘able bodied’ throughout, which most writing about lived experiences of disability have discarded, in favour of ‘non disabled’, or if you want to get really radical ‘pre disabled’ (because its likely you will all become disabled to some degree before you die). She professes worry that her client will never find a partner, that is can be ‘difficult or nearly impossible’, given “how difficult it is in his situation to meet potential love interests”. I don’t know Rob personally (and also not sure though even anonmizyed, if he had consented to be written about in such detail), and I am sure dating as a young disabled wheelchair user can be a huge struggle, mostly because of the way society views his body and projects an inability to be adult, to love and be loved, and to be intimate, onto him. That however, is not solved through sex work alone, it involves deconstructing disability as a non disabled person, teaching that to the people around you.
She goes on to say the right things - disabled people want sex, there is a stigma to breakdown around sexuality and disability, but the motive behind it all seems to be - I am a good non disabled person because I help disabled people. Taking intimacy out of the equation, this mindset can be found amongst care staff, SEND teachers and anyone in contact with disabled people who believe they are inherently better people, for helping ‘the less fortunate’. Doing good from a place of pity does nothing except halt social progress for the group you claim to be helping. There will always be bias, and arguably, harm, if you are contributing to a cause through guilt and saviourism instead of the much messier, more complicated task of attempting to unlearn the harmful stereotypes you’ve harboured and reconfiguring your worldview to value all bodies as equal.
“Still, it makes me feel sad to think of how those people suffered in silence, ignoring their purely natural needs and urges, simply because they were disabled and didn’t want anyone to get into trouble.”
There is much to applaud in the recent rulings of the laws around care work: “the Court of Protection ruled that care staff helping disabled people access sex work services were not breaking the law. Prior to this, under section 39 of the Sexual Offences Act 2003, it was considered an offence for a care worker to intentionally cause or incite a person they are supporting to engage in a sexual activity.” - a necessary adjustment in an outdated policy that initially sought to protect disabled people from harm but, as with many laws relating to disabled lives, treated all disability as a singular diminished experience of existence.
After we nit pick for terminology and clumsy sentences, we have to ask, what is this piece really saying? what is the key message? These are crucial questions a writer should consider before pitching a piece and continually throughout the writing process.
In this case, there is a disconnect, and perhaps an ignorant innocence that answers these questions. The author may intend to tell readers that disabled people are (surprisingly) good in bed, that there is a service within sex work that addresses a need but it is morphed through the lens of understanding disabled lives as lacking, there is something innately missing, and it is because they are disabled.
People much smarter than I argue over whether sexual desire is innate, whether sex is a human need/right, and what means justify obtaining it. As Amia Srinivasan says, there is no right to sex, which is a rule I abide by, and perhaps the root of my issue with this piece is philosophical.
Although such lofty questions are interesting to consider, and the intent of the piece may be from a just place, it does not negate the material consequence of the writing. The article is perceived as forward thinking, the issue lies within the praxis of the author which translated into a short and snappy piece of text, compounds the ongoing issues around sex and disability that this non disabled person claims they are addressing.
That is for this month folks,
Catch you on another side of the internet,
Hannah x