Good evening friends. Happy Sunday. A delayed letter this evening as I had a sports filled day (who have i become?). Three cheers for Hamilton’s second place in Hungary, and all the roses for the England women, bringing it home. Today’s letter has some thoughts on book news, many other articles I have admired and an essay about pain.
getty images
READING // LONG FORM
Is Irish lit having a moment?
With the Booker longlist announcement recently revealed, it would be remiss not to mention at least some fleeting thoughts on the presence of two Irish authors, and moreover two distinctly Irish narratives, in the list. These thoughts are the result of conversation with my internet book group chat so shout out Jay and CJ for igniting them.
I have only read The Colony, although Small Things Like These is staring at me from my mum’s pile of holiday books. I loved The Colony, its thoughtful prose and playful language meditates on the themes of language discourse, native tongue and familial ties beautifully. It won’t be for everyone, I'm sure. Its Irishness felt sturdy, and its background nod to The Troubles subtle and without hand wringing. Small Things Like These sounds like it might be a little twee for me. I am also ardently against reading books outside of seasons they are set, and Keegan’s novella is about Christmas, so I'm afraid I can't indulge. From reviews of the work it does pull on the Irish historical heartstrings, unpicking the tense history of the laundries.
Both American friends suggested Irish Literature was having a moment. And although Ireland has been steeped in literary history, it does feel that contemporary Irish literature is being given more air time, on the international stage at least. Outside of the big hitters, Toibin and Doyle, Rooney undoubtedly created a chasm for publishers to take a second look at contemporary Irish manuscripts that cross their desks. Exciting Times was met with a mixed reception to the USA based readers I observed. Acts of Desperation was lauded for its toxic relationship not its depiction of Irish fathers and terrible bus systems, although the latter is rather mundane I admit.
It does also seem the interrogation of Rooney’s work stateside is often devoid of complex class systems and the hangover of Catholicism that haunts her characters. The popularity of the novel and subsequent encouragement of the TV adaption cemented Rooney as a writer of Sad Girl Lit only. Keegan and Magee stray from that trope entirely but are participating one of their own, one that still wallows in misery.
Kathyrn Hughes for NYT notes of The Colony: “Magee builds her world with a rich particularity that never defaults to the off-the-peg lyricism that often marks novels about rural Ireland” - which is telling in itself.
Although these two titles go against the grain of the more recent Irish stories that have made it across the ocean, they are still both tied to internationally acknowledged Irish history: the laundries and The Troubles. Perhaps that is all we can hope for. That is not to say those are worthy topics to consider, and at least in The Colony’s cases, it was handled deftly with a modern inclination.
Anna Burns’ anonymous take on the violence in the Troubles was widely acknowledged after its own Booker win. It was published by USA based Graywolf press, an independent house responsible for thirty new titles a year. All power to them for picking up such a brilliant work but a consideration that the big five weren’t vying for it, although it was published pre its win.
Milkman although experimental in some senses , it is another explicit dealing with an international part of Irish history. Cullen Murphy reviewed Fintan O’Toole’s recent history of modern Ireland with revelry, yet more reckoning with bloodshed, Jack Sheehan for the baffler, strongly disagreed. So, I suspect Niamh Mulvey’s hyped stories of millennial Irish heartbreak will pick up a US publisher before Jan Carson’s mystical take on illness finds a home there.
Magee and Keegan divert from the sad girl Irish lit, but they remain in line with the narrow view of Irish hardship as the only thing worth publishing for those over in land of the free.
READING // SHORT FORM
This is a long letter, what can I say, I am in a rambling era, so I will attempt to sell you these pieces in one line, and you can read them for yourself instead of my rehashing
Could four of us having a baby together be the answer to parental burnout? I’m hoping to find out. Eleanor Margolis for the guardian contemplating if co parenting could be a solution to a society that does not make parenting accessible, affordable or even some may say, enjoyable.
Julia Métraux, a writer I hugely admire, penned an important health story for Insider. Some patients say a commonly prescribed steroid triggered mania and suicidal ideation. I should know — it happened to me. pulling together the mental health impacts of chronic illness, the piece speaks to the taboo topic of disabled people experiencing the desire to no longer be alive. in this case it is a side effect of a medication, but is part of a wider conversation that needs to be had.
She personifies responsible health journalism is. Stories like this rarely break without someone with lived experience behind it, and Métraux blends the personal with the political brilliantly.
Adam Delva in the Atlantic reminded me to dig into Febos’ collection I bought in a frenzy last month. You'll be pleased to know it was one of fifteen books I stuffed into my suitcase for a couple of weeks of travel in August.
In Defence of the Illness Memoir - I screamed FUCK yes when I read Naomi Morris’ piece in ID. so much of current culture writing relating to narrative nonfiction fixates on trauma plot and devoid of any disabled voices. The books that get the most coverage remain those that overcome, that pander to non-disabled fear and concern themselves only with transformation. Crip writing, as Morris explains, is essential in disrupting this .
I think I half achieved the short and snappy takes :/
BLOWING MY OWN TRUMPET //
Tis the summer of chaos for many people who are taking trips during the next few weeks. For my July column at SCREENSHOT, I interviewed fellow disabled travellers about the access issues this creates.
I wrote a somewhat personal essay for Yahoo Life, full of joy and pride in this month’s celebration for disability pride. I have so many more feelings on disability pride, the way some other writers and online activists are calling for a somewhat pinkwashing approach that I think is the last thing we as a community need, and personal trouble with feeling pride during a downturn in my illnesses. Nonetheless I enjoyed writing this one with a light touch, feeling proud of how far I have come with language since becoming disabled five years ago.
A diversion from my usual beat, and a fun one at that. I sat down (virtually) with Ione David, the woman behind the infamous instagram account: Beam Me Up Soft Boi, for Refinery 29. Was a truly - laugh so hard it hurts - interview with David. Although her subject matter veers into the disturbing, it was a joy to write outside of my self imposed box.
In BOOKISH news, I interviewed Ali Millar on her memoir - the last days. Recalling her childhood as a member of the high demand religious group, the Jehovah Witnesses. I also created the second summer reading list, this time from Italy.
And finally, another piece, this time a feature, for Refinery29 - I’m a young disabled woman - why can’t I want kids too? This piece continues the conversation about disabled bodies and future parenthood. This piece had a couple of iterations before its final form you are reading now. As you’ll see below I continue to tussle with exposing myself in writing, and I ended up writing myself out of this piece for the most part. Despite the first person headline (that I didn’t write) II am happy with that choice. My work will always be informed by my life experience but perhaps I don’t need to show readers that.
LIVING THROUGH //
Not getting better, getting worse
It seems as quickly as I declare my withdrawal from personal writing, it is all my brain wants to do. It is funny how that works, not really funny, just extremely ironic and very frustrating. Let us see if I feel less icky about baring my soul to you folks that actively subscribe to read my bullshit that when I sell my personal stories to publications for strangers online to comment on.
Living through has always been the title for this amendment for the newsletter. When I launched this Substack over a year ago, it was the only place I was writing. I had yet to even send a pitch or consider the idea editors would want to see my work. I am in some ways in a very different place, professionally at least, now. For a while this section contained more asinine and observational writing, not always oriented around illness, although that was and continues to be the thing I am living through most. So, I return to the question of what it means to build a career from disease? What can my writing mean if it only follows the narrative of my health? And still, I answer with, there is little more I can talk about when it is health, or lack of it, preventing me from doing anything else I want to.
There are some painfully earnest quotes that float around my Instagram feed, telling viewers they have a chronic illness because they would be too powerful for the world otherwise, which is a baffling sentiment to me at least. But sometimes I do consider what more I could do if I wasn't unwell most of the time. What jobs I could have, what money I could earn, what places I could go. Although part of me thinks I couldn't write if I wasn't sick, because I wouldn't be able to compete with the swathes of other voices, but maybe that is my way of convincing myself that my current situation is okay. Without sickness maybe I wouldn’t be doing this, but the choices and opportunities of what I could be doing, seem never ending.
Right now I am not writing as well or as much as I would like to. Another strand of work has taken over my time, made me sicker and even less able to pursue the other jobs that make me happy. My health is getting worse, on paper, in reality, I can see it happening. It has been on a slow decline since January and it has taken me until now to admit it.
I hold my hands up and say, if it doesn’t look like it to you, from what you see online, I know that is my own doing. I pulled away from discussing the intricacies of my health online before I publicly declared the ick I developed from writing about them too. There are a myriad of articles telling us that social media is a highlight reel, groups of online influencers who produce content that purges perfection and yet I am still participating in posting mostly just the good bits. And that's okay.
Ione Gamble asks in her book Poor Little Sick Girls what use is posing in hospital gowns, allowing nondisabled people to revel in their goodness for liking our pictures, for ticking the box of disability, if offline reality continues to discriminate against illness.
And she is right, hospital selfies don't change policy, and we are well past the awareness stage of disability rights. We see the statistics, the attempts to change discourse through my own images seems futile, but I didn’t ever claim that was their purpose either. I dislike sympathy, like most other sick folk. I hate invasive questions and ‘pain olympics’, I can acknowledge my own privilege in sickness in my own life, declaring ‘I know I am lucky’ every time I leave a doctors appointment without new medical trauma seems unnecessarily self flagellating.
an accessible bathroom last night, blue stool found in the hotel room corner, repurposed as my shower seat.
The place I am in now feels worse than previous moments, because I am at a crossroads with my mobility. I am regularly struggling to walk without pain, the pain radiates through my fingers and toes. A bee stings at my extremities whilst I am attempting to collect groceries, order a new medication, or take a zoom meeting. It stops me in my tracks, I contain multiple screams that rumble under my breath. The pain is sharper, fiery, not like the blunt edged knife that usually stabs my insides. I know how exhausting wheelchair existence is. I have used one on and off for the past year, but always pushed by my partner, with the ability to shake it off on the days where I knew the gig would be inaccessible, or the stares were too much to handle. Now I am contemplating a more permanent fixture, perhaps a power chair or a lightweight manual model. Something I can use alone, more often.
By account of my other writings you may assume this would be an easy transition. Mobility aids are freedom afterall. And yet, I am gutted, I am upset, I am just a bit lost. It is not only the new level of inaccessibility to contend with, one that I have some knowledge of, one that others in my community talk about often. It is the pain, it is the understanding that I am really not getting better. Even if I manage to put one condition in remission, even if they create a treatment following the surge in post viral illness from the pandemic, I will still remain in this same body, in this same pain.
I knew I wasn’t getting better, but getting worse is harder to reckon with. All of the things I repeat to myself - slashing my ties to productivity as equivocal to success, severing the relationship between health and moral goodness - none of that make a material difference to the fact I am in so much pain, most of the time, and no one can seem to help.
ANY OTHER BUSINESS //
A friend of a friend is fundraising for their top surgery, they are almost 75% of the way there! If you are in a position to donate, you can do so here
My own boyfriend and best friend are running the marathon in Amsterdam for The M.E association, again, you can donate here
If you like this newsletter you can read the weekly version over on Patreon for 50p per letter, it helps me keep making this free version
That is all for now, catch you on another side of the internet,
Hannah x
I appreciate your writing about disability / chronic illness AND mixing it in with other stuff. Why not? It's life, after all. I don't think we should have to share everything like a new form of misery lit/inspiration porn, but the pandemic has produced newly disabled people in such vast numbers, I've decided to just treat my own disability (post viral) as a normal iteration of life. I wonder if our exclusion of the elderly from much cultural participation is also ablesim at work.