#disabilitylit — Public Fediverse posts

📘 "Ascendance of a Bookworm, part 2: Apprentice Shrine Maiden, volume 1-4" by Miya Kazuki, translated from Japanese into English by Quof, with illustrations by You Shiina

This is a post about four books, the second arc in the Ascendance of a Bookworm light novel series. They're book 4-7 in the series and won't make much sense if you haven't read the first arc.

At this point, the series has fully won me over and I'll probably read all volumes at some point. I mostly read these four during the recent heatwaves (plural, sadly), because they're so easy to read. Even when I'm tired or find it hard to concentrate, I can always make it through these books.

In its core, this is still a book series about a bookworm in desperate circumstances trying to get her hands on books after being transported into a fantasy world where illiteracy is the norm and books are a rare handmade luxury. But the pacing and tone have changed quite a bit in this arc. The stakes have gotten incredibly high, and there are now action scenes, plots twists and cliffhangers. Some subjects that got introduced were more severe than I had expected. The world of this story is already rough: society is based on an extreme class difference, so there's lots of poverty and child labor is basically a necessary everyday occurrence. But in this arc the lifestyle of the rich and privileged come into view, and with it a lot more ugliness. Be warned that there's quite a bit of talk about child sexual exploitation in these volumes.

The setting is changing too. The world was so small before, limited by the means of the main character. But now that she's gaining more resources, the world is opening up. We get to see other parts of the city and even a few completely different regions. I loved that.

This arc also introduced many new side characters. I became particularly fond of the High Priest and Fran. There's also an increase in bonus chapters at the end of every volume, which are written from different characters' perspectives. One of them, at the end of volume two, was heartbreaking. It offered a rare view into the protagonist's previous life and left behind a bittersweet note that rang through the next volumes.

This is also the arc where the main character finally reaches the milestone of making her first book. What a journey it's been (almost three years have passed in the story I think since the first book) and yet it feels like only the beginning. Onto the invention of the printing press, baby!

Disability and sickness are still a main pillar of the story, although it's been woven into the lore of the world more. It seems fitting. I like that it's plot relevant, and I also appreciate that despite (healing) magic existing, there has been no full magical healing of the protagonist up till now. There are no magical quick fixes, just intense uses with consequences. The protagonist is still someone who needs to learn to pace herself to remain upright.

I'll probably take a small break from the series for now, but I'm looking forward to the third arc. I know there's an anime adaptation, but I haven't watched it yet. I'm wondering if I should catch up to where I'm at in the novels, or if I should save it all until I'm fully done reading.

#LightNovel #DisabilityLit #WomenInTranslation

📗 "Notes Made While Falling" by Jenn Ashworth

Memoir, essay and literary analysis blend in this non-fiction book. Mainly it's about the author's horrific medical experiences and all of how life changes afterwards having to bear those memories. But it's also about literature, writing, self-reflection, fear, mental health, fragility, the general portrayal of sickness. It's kind of a complicated net thrown outwards, as far as it can reach while standing on the rock of medical trauma, and then pulling it back inwards. She shows us what's caught in the net and how it relates to each other.

I had to take a break from reading this book in the week before a medical procedure, because it was really pushing those medical trauma buttons for me. It's hard to deal with pain, complications and not being taken seriously, especially once you're powerless, sedated, paralyzed, or otherwise choiceless, stuck in the hands of medical personnel that can help or break you -or both at once.

The essays have satisfying structures and are really well thought out. Some quite clear, some more experimental. The high points were reflective and engrossing, the lower points were stressful and unsettling, but not always in a good way.

The book dedicates a lot of pages to showing how some medical experiences and dismissal can really fuck you up. It can be hard to read. I don't want to judge the author based on just these pages, but it doesn't sound like she was a good parent or partner for a while. Understandable, but also difficult to confront while reading.

Overall this was an interesting read, I especially liked the reflections about writing and reading. If you have any medical trauma yourself, this might be relatable to read, but it might as well be haunting and triggering. It was a mix of both for me.

#memoir #DisabilityLit #AmReading

📗 "My Body is a Meadow: Finding Freedom in the Outdoors" by Bethany Handley

This book isn't out yet, but will be later this week! I received a digital ARC for it (thanks!).

This is a memoir-style essay collection about the intersection between disability and nature. It's a personal look into being Disabled and finding ways to have access to your surroundings despite the plethora of unnecessary barriers set up by an ableist society. It's about the artificial divide between wild and urban, human versus nature, healthy or sick, abled versus disabled. Instead of reflecting on ourselves as a possible symbiotic whole, marginalized communities like the Disabled are mistreated and neglected just like our planet is.

I liked reading about that comparison, and I liked the idea that our bodies are adaptable just like nature is resilient. I most appreciated the ideas about interdependence. There's such shame in society about being disabled and having to rely on others. But who or what is truly totally independent? Why do we need to be, when everything in life is interconnected?

I loved reading about the author's relationship with her family, her experience on the trails and the humor she brings to it all. Although certain scenes had me chuckling, it never took away from the seriousness of the ableism that is discussed.

The content obviously focuses mainly on Welsh nature, UK law, the NHS, being at least partially mobile, and using a wheelchair. You might be able to have more practical use of the book's information if you're in the same circumstances, but anyone can enjoy this book. If you love nature writing, you're in good hands. Being someone who walks with braces (and sometimes a cane) myself, I found most of it relatable and deeply comforting.

After a long rehab period for an injury, recently I was able to go to a local nature reserve for the first time again. The accessible path was abysmal (as expected), but I have no words to explain how good it felt to be outside and to feel connected with the landscape. Fortunately the author has plenty of words to explain it for me. I had to laugh when I read the part where she's able to be outdoors again and one of her loved ones has started taking a picture every time. My loved one's phone has definitely built up a collection of awkward 'look at you existing here now at this point!' photographs of me over the last two years.

Anyway, by now you'll probably know if this book will be a good read for you too. I hope you'll give it a try if it sounds at all interesting to you. I'll leave you with a quote:

"Threatening Disabled people and those requiring health and social care stigmatises illness, as if being mortal is not a necessary condition of being alive. [...] We are not solitary beings who can divorce ourselves from illness or being disabled; we are all Disabled or pre-disabled, living on a disabled planet."

#AmReading #memoir #DisabilityLit

📗 "Leaving Home" by Mark Haddon

Like many I knew of Mark Haddon because of his book "The Curious Incident of the Dog in the Night-Time". It was one of the first English language books I picked out myself and was able to read (leave me alone, graded readers telling tales of animals going on adventures!). My English teacher ridiculed my book choice and told me I pronounced 'appendix' wrong, but fortunately wasn't able to kill my excitement for reading despite her best efforts.

The author came back on my radar when I saw an article about him dealing with Long Covid. His upcoming book would be a memoir, this one, so I've eagerly awaited it. I loved reading it, but if you've been waiting and hoping for a memoir that would be at least partially about Long Covid, this one isn't it. It's only talked about for a few pages.

In here Haddon shares his experiences with writing and creating art, but it's also mostly about growing up with abusive parents, dealing with mental health struggles and creating a sense of connection with others. There are dozens of photographs and art pieces, so reading in a medium that can show colors is recommended. I read the book on my black/white ereader, but later leafed through the book again on my pc so I could see everything with colors too. It really adds to the experience.

I felt a sense of companionship from this book, reading it calmed me down and made me feel less alone. The author comes across as someone who's very kind and always tries to understand others (even though I couldn't help but wonder if setting stricter boundaries or cutting certain people off might have been better for him in the long run, despite the guilt and regret that may be the result of that).

However, I think this book is best served with a content warning too. The author is honest about his suffering and the bad periods of his mental health. There's descriptions of phobias, dark thoughts, talk about suicide and even a picture of a stitched up wound that was the result of self harm. For me personally, such openness is appreciated. But I think it might be difficult and even triggering for some, so go in prepared.

If you like artsy, experimental memoirs with short, stream of consciousness, reflective chapters, here it is. I'm glad to have read it.

#memoir #AmReading #DisabilityLit

📗 "Head Above Water: Reflections on Illness" by Shahd Alshammari

If I don't read any disability lit for a while, I fall into an unhealthy pattern. I judge myself for not doing as much as I'd like to, I start comparing myself to others and I feel the need to give in to the urge to push my body beyond its capabilities. Why am I being so cruel? I recognize the downward slope and pick up a book like this one.

This is a memoir by an English lit professor in Kuwait who has MS. The structure is hard to describe. It's a little chaotic, it tackles random moments in her life just like MS tackles random body parts on random days. But ultimately there is a narrative woven in place, it's just a unique pattern that takes a little while to form.

It's a book about her becoming ill and learning what that means for herself in a society, as a woman, as a young person, as an Arab. It's also a little about her Palestinian heritage and about her time studying abroad in the UK. It's about being mistreated, but also about the people who make it worth it to do the difficult and scary things in life.

Reading about how she reflects on her body was comforting to me. But the parts of the book I liked best were about her teaching experience. It's fun to hear someone be so passionate about something. It seems like incredibly hard work, but also very rewarding. Her female classes sound like a joy to be in.

Connecting illness, disability, literature, womanhood, narratives... it did what it wanted to do. I had a good time with it. I'm more responsible with my spoons again too. I'll certainly pick up one of the author's other titles.

#AmReading #memoir #DisabilityLit

📘 "The Oldest Bitch Alive" by Morgan Day

This title isn't out yet, but will be released in March 2026. I received a digital ARC for it (thanks!).

This book sure is a little oddball, and a cool one at that.

There's a mountain range, and in those mountains there's a lake, and on that lake there's a glass house, and in that house there's a couple, and with that couple is a small, aging French bulldog: Gelsomina.

There are no big adventures for Gelsomina. She's limited by glass walls and her traitorous collar. No rubbing her butt when she's itchy! No jumping and licking wherever she wants! Gelsomina can't act on her own will, because she's a pet: contained, spayed and bound by human will.

But that's not all. Two parasitic worms have started living within Gelsomina. Not only is she subjected to two big creatures who shape her external world, but also two tiny creatures that are changing her internal one. Can Gelsomina get a break? Not really, because there's Zampanò, the couple's newest, young French bulldog. He's nice enough, but just in a different phase of life.

Seeing all this play out through the dog's eyes, but also through the worms', and sometimes through others', was a trip. It's confusing, but fascinating once you learn to just roll with it. I really enjoyed my reading experience.

My only complaint, oddly enough, is that sometimes I wish I could have reveled more in that unknown, in the vagueness of it all. I love looking up terms, coming up with my own ideas, spending the evening on Wikipedia because something I read in a book sparked curiosity in me. I felt like this book wanted me, as the reader, to be like that, and in that desire, pushed it a little with trying to direct me to certain knowledge in a few chapters. Like a little quest marker in a game.

There's reflections on architecture and design woven throughout the novel too, which I liked. The glass house, so open and light, trying to blend into the nature surrounding it, comes to feel like nothing more than a prison. The descriptions made me think back to when I was in university. We had to do a group project in pairs. I had to work together with a 30-something millionaire. She refused to meet at my place (too poor) and didn't want to work in the library or a different public space (too gross). She lived in a glass villa and demanded we work on our project there. My first time there she was mortified that I drank water from the tap. Visiting her filled me with dread, being in her home made me feel like I was locked in an aquarium. She was a narrow-minded bully, but thought of herself as progressive and sophisticated. It's fitting. I can't help but link all of these big, silly, glass houses to her now, haha.

Overall, I thought this was a special book. It makes me excited that little weirdos (affectionately) like this one are getting published. Would very much recommend if you like experimental fiction, or have any interest in design, animal rights, being absorbed into the universe only to find out you were part of it all along, what it means to be free, cute dogs, biology. If all that fails, I'm sure the title will draw your attention!

#AmReading #LitFic #DisabilityLit

📗 "Complex PTSD: From Surviving to Thriving" by Pete Walker

It's time to start healing, but... maybe not with this book. It's not bad. It's not great either. I think it's 1/3 good, 1/3 frustrating and 1/3 filler.

What helped was the recognition of complex ptsd as something chronic and serious. An important concept in here is that of emotional flashbacks: reacting strongly to certain things in your life, maybe disproportionally so, and it's because you're reliving something from your past, but only emotionally and without any clear event or memory connected to it.

What made this book a letdown for me is its denial of an unsafe world. There's a massive focus on trauma forming due to your parents' abuse (and fortunately neglect is seen as a form of abuse as well). But the author's belief is that once you're an adult and out of your childhood home, all can be well again. You just need to work on yourself, you're healthy and strong and people are kind, so the world is full of wonder!

If your trauma has been continuing to build up since childhood in any way (school bullying, toxic workplaces, medical neglect, discrimination, natural disasters, poverty, societal inequality in any way, shape or form), I think you'll feel a disconnect from this book too. The author lives too much in his own lucky life with good circumstances to imagine anything else. It's not subtle either, but a glaring deficit.

I also didn't like the author's concepts of 'mothering' and 'fathering' and it annoyed me quickly. I know it's only a minor detail in the text, but it came from sexist thought and it was grating when I was already frustrated with the book's other shortcomings.

Would I recommend it? I really don't know. I've seen many people online who've benefited greatly from this work, so maybe. But I also think it can do some harm or by making you feel insecure or misunderstood when your trauma and way of coping doesn't align with the author's vision. Maybe just read the first 100 pages and then let it go. The author has a website with lots of his articles, so maybe browse those before deciding.

#AmReading #cptsd #NonFiction #DisabilityLit

📗 "Het verhaal van mijn schaarste" by Marieke Groen

A Dutch memoir whose title roughly translates into 'the story of my scarcity'. Unfortunately not translated into any other languages (yet?). Although the small details are specific to The Netherlands, I think the bigger story is universal (at least in the West) and readers internationally could benefit from getting access to this book.

The author has lived beneath the poverty line for most of her life. She expands on this fact by telling about her childhood, where she was mostly neglected and belittled by her parents. After getting kicked out at seventeen, she had to fend for herself. Poverty, loneliness, sickness, shame and a lack of opportunities crawl into her life. Of course this snowballs on and on and on.

In the last quarter of the book the author expressed some attitudes about covid that I hated reading (being casual about the severity, complaining about masks, etc.). I think it says a lot that I kept reading despite that and would still recommend the book. I flew through it in two days. Then my partner, not a big reader, grabbed it and is now racing through it as well.

It's a rare book in its clarity and openness, and I wish there were more memoirs like it. I feel vulnerable admitting it, but most parts were so relatable. It's such an honest look into CPTSD and the alienation of having to deal with scarcity, especially surrounded by people who don't understand. Just work, just deal with it, just seek help, just solve it already. The book really zooms in on that helpless feeling of looking at the people around you and thinking 'how are they doing it? how is society fine for them? how are they finding work? how are their families so nice? how do they not doubt themselves every second? how do they keep up with it all?'

This book is about floating in between being functional and dysfunctional, about being poor and traumatized in a rich country, about being an outcast from your youth onwards and having no safety net and feeling like you're cosplaying at being A Regular Person at the best of times. The book has its flaws, but it's good. Very confronting, but also a comfort.

#AmReading #memoir #books #bookstodon #DisabilityLit

📗 "Your Hearts, Your Scars" by Adina Talve-Goodman

A small essay collection, put together by a few editors posthumously. As a child, the author lived for years with heart failure, until she received a donor heart at nineteen. The transplant went well, but she passed away at 31 from cancer caused by post-transplant immunosuppressants.

These essays mostly tackle what it means to be ill or healthy. How experiences and the scars they leave behind shape you, especially when coming of age. How you relate to others -people who went through the same thing and people who will never know any of it. They're written very well, sad but always with a sprinkle of humor and insight in them.

Of course it reads bittersweet, knowing that the author passed away before she could write a full collection. Some of the texts are still a work in progress. I'm happy this work has been released into the world, yet sad that there will be no more. Thinking about all the could haves and never could have beens.

#AmReading #DisabilityLit #essays

📘 "De Parijse trilogie" by Colombe Schneck, translated from French into Dutch by Marijke Arijs

Available in English as "The Paris Trilogy" or "Swimming in Paris", translated by Lauren Elkin and Natasha Lehrer.

I was browsing Marijke Arijs's translations and the Dutch cover immediately grabbed my attention. It's stunning. It's a part of a painting called 'Bliss', painted by T.S. Harris.

Back to the text though: this is a bind-up of three novellas, all autofiction. I fell in love with two of them, and thought the third one was okay.

The first novella is about the author's abortion when she was a teenager, not that many years after abortion (under certain circumstances) became legal in France. Schneck comes from a well-off and progressive family and she can access this type of healthcare relatively easily, yet the experience becomes something unmentionable in her life. This novella, breaking the silence, reads like an ode to Annie Ernaux, the procès de Bobigny, and all of the women who came before her. It's open, sincere, plain but clear. I loved reading it.

The second book is about two friends, both from a high class background, but only one of them comes from 'old money'. It's extremely self-aware, making the privilege bearable. It's about how two girls can be thick as thieves, but also rivals, and how jealousy and social differences can threaten the bond, making it unequal and difficult at times. It looks at how, despite their wealth, they still endure girlhood and turn into women limited by a patriarchal society. But all of this is accompanied by the knowledge that one of them will pass away early due to cancer and leave the other behind, alone. It's written beautifully, but it's a very sad read. The difference between two people, so easily it becomes a barrier to love and friendship.

The third novella taps into this theme too. The author wanders in her memories, of crushes on girls and boys, her first loves, the lovers she took after her divorce. It hones in on one specific partner she had for a short while, a man very different from her, who eventually left her, but also kind of strung her along. She's stuck on him for years, which was sad to read about. It explores the fear of being (left) alone, especially after having experienced the death of family members and friends already. I got kind of frustrated reading this, but also understood where the author was coming from. The ending was fitting and somewhat of a relief.

Overall, this was a great collection. I'd recommend them all, separately or collected, but I think they work very well together as a trilogy like this.

#AmReading #WomenInTranslation #DisabilityLit

📗 "Op een andere planeet kunnen ze me redden" by Lieke Marsman

Best book cover of the year, hands down.

This book is only available in Dutch for now. The title translates to 'on another planet they can save me'.

I'm not sure what to think. This is a collection of essays, diary pages, some stream of consciousness, book discussions, fragments of poems. A few years ago the author got diagnosed with an incurable, rare type of cancer. Knowing that she will die, probably within a few years but not knowing when exactly, obviously is a messed up thing to learn to deal with, especially in your 30s.

Mostly we get a very raw processing of the circumstances. There's grief and also a lot of anger and frustration with the Dutch healthcare system (I can relate with that last one unfortunately...). Now that the author has to deal with her own upcoming death, the typical western, atheist, pragmatic worldview is lacking. She searches for God/spirituality/religion after some personal experiences, and then starts getting broader and broader until she's studying UFOs and the existence of souls.

The tone gets kind of "hey, I'm dying and these things maybe being true gives me comfort and hope right now, so who are you, so-called rational person, to judge me? I'll hear back from you when YOU're the one's who's dying" and you know, fair. Maybe I'll be like that too.

Maybe it gives me the ick more quickly because I don't come from an atheist family, but from a very spiritual/occult/new-age-y one. In my opinion, they often used their beliefs in toxic ways to give people false hope about life after death and messages of ghosts of loved ones and such. For the author, rebelling through being understanding towards a different worldview is opening the door for such things, for me it's by closing that door.

I also often wonder about the conviction some have that life is only meaningful if there was intent behind. Some deity must have made it this way, or there must have been a plan of some kind, or things are meant to happen, etc. I think these feelings kind of confuse me. Space, celestial bodies, earth, ecosystems, cute ducks, trees, trillions of cells working together somehow... it's so cool and amazing. Whether it was intentional or accidental or evolved, does it really matter? It's precious and awesome either way. It's just really sad how humans in general are getting along with the world around them, undervaluing it greatly. But that's a different topic.

Anyway, would I feel differently if it were me in the author's shoes? I don't know, maybe. I hope I won't have to find out. Either way, it was interesting to read how her time has been so far. It can't have been easy to be so openly vulnerable in your published writing.

PS: The artwork on the cover is made by Caitlyn Grabenstein. Her portfolio is a lot of fun and definitely worth a browse. Apparently she's releasing her first novel soon, so I might have to check that out too.

#AmReading #DisabilityLit #memoir

📘 "Ascendance of a Bookworm: I'll do anything to become a librarian, part 1: Daughter of a Soldier, volume 2 & 3" by Miya Kazuki, translated from Japanese into English by Quof, with illustrations by You Shiina

With these books I've now completed part one of this very long tale in light novel form. I came for the talk about having a book obsession, I stayed for the chronic illness representation. It truly is that good.

I can't say that the plot develops at a snail's pace, because that would be hurtful for snails. A snail's speed is way quicker than the unfolding of the plot in these novels. Most chapters are just slice of life moments. But I don't really mind. I pick up a few chapters after doing a random task, when I'm in a waiting room, or in between other books, and slowly I'm making my way through.

I don't want to say too much about the series anymore, for fear of giving spoilers. I might give an update if I ever get around to finishing part two (which consists of four books I believe). I've grown quite attached to all of the characters and am looking forward to even more entering the stage in part two.

#LightNovel #DisabilityLit

📘 "Hunchback" by Saou Ichikawa, translated by Polly Barton

Again? Yeah, again...

I saw that my online library had added the audiobook to their collection and I was curious. I don't do well with audiobooks for new books, but I thought it might be okay for a reread. Some scenes were definitely funnier read out loud, while others were more threatening.

Overall the book was sadder on a second read. I can't get over how we're spending all this time watching the protagonist try to validate her own existence, only to turn into a footnote in another person's life. Will I interpret it differently in the future? I wonder.

I'm still amazed by how much the author was able to include in such a short novel. I hope she keeps writing.

#DisabilityLit #WomenInTranslation

📗 "Crying Hands: Eugenics and Deaf People in Nazi Germany" by Horst Biesold

This is an academic study, edited into a 'regular' book for an English speaking audience, focused on the attempted eradication of deaf people and the Deaf community in Nazi Germany.

Eugenics was a very present reality in the Third Reich, but it's not often discussed. Even after Aktion T4 ended, disabled children were still murdered and chronically ill and institutionalized people were starved deliberately.

This book from the 90s really zooms in on deaf people specifically. Many were killed. The ones who weren't killed, were violently sterilized against their will. The ones who weren't sterilized, were forced into abortions when pregnant. The ones who made it through all that with a child, often lost their child through murder.

The author and researcher of this book dove deep into archives. He collected documents, letters, anything that could be considered proof. He also sent out questionnaires to survivors and held interviews. This book is really thorough.

There was a general misconception that teachers in special education, caretakers and doctors tried to spare or help deaf people. In reality, they were the main collaborators. It takes a lot of effort to resist, but it takes little effort to be passive, to do nothing, to just look away. Yet, so many of these people chose to actively report deaf children and adults, knowing what could happen to them. Many of them supported eugenic ideals and believed humanity would be better off that way.

After the war, disabled victims were not recognized as persons persecuted by the Nazi regime. There is no way for survivors to win a trial, or to get compensation for their suffering or any ongoing consequences. No recognition whatsoever. Because sterilization surgeries weren't very modern yet, and because the executors had little care for these patients, survivors have frequently lived the rest of their lives with chronic pain and medical problems, on top of the trauma of losing family members, being hunted down and being childfree unwantedly.

The perpetrators of the eugenic deeds have continued their lives without punishment. Even decades later, many still defend their actions and believe themselves to be good people who did what was needed.

The ideas of eugenics are still commonplace. Ableism is an everyday occurrence. I mourn for what happened to anyone considered 'other' in the past, in the present day, and for what awaits us in the future.

What can I even add to this?
What is left for me to say?

#AmReading #DisabilityLit #NonFiction #eugenics

Looking for beta readers for Moon Money, my gritty cyberpunk novelette (8.7k words). It’s got ghosts in the machine, broken men, & code that dreams. Queer. Disabled. Bleeding with grief & defiance. If you like stories that flicker like static & hurt a little—DM me. 💀💾🚬
#BetaReaders #Cyberpunk #QueerFiction #DisabilityLit #OwnVoices #AmWriting #MastoWriters

https://docs.google.com/document/d/1FevdcmOA4QwGMZkcoAj3CCKEmYHCJc2XCw5xwn7IQlc/edit?usp=drivesdk

Returning to Atwood's Cat's Eye (again).

Every re-read reveals new layers about how institutions fail us, how #trauma shapes #perception, and how #art becomes #survival

As someone who's lived through foster care, medical #gaslighting, and academic #ableism, Elaine's sharp observations of power and complicity hit differently each time.

Literature as mirror and map.

#DisabilityLit #Atwood #TraumaInformed

📗 "Geloven in het wild" by Nastassja Martin, translated from French into Dutch by Peter Bergsma

Available in English as "In the Eye of the Wild".

Well, the Dutch cover really didn't shy away from the topic... This is a memoir from an anthropologist who was travelling the Kamchatka Peninsula when she was attacked by a bear. Her head was mauled and it's miraculous that she survived, especially being far away, isolated in nature.

In this book she mostly focuses on what the bear attack means to her, and to the people of the region. It's a little bit stream of consciousness -she goes into oral histories, beliefs and legends as she's trying to recover and give meaning to this event that divided her life into a before and after.

Part of this book is also a medical memoir: first in intensive care in Russia, later in repeat treatments back in France. Anyone familiar with hospitals will be able to at least recognize part of the abuse and bitterness that too often go alongside treatment. However, I was also frustrated by the author's attitude a lot. She ridicules masks, refuses to isolate when necessary, demands to walk when using a wheelchair would be a better option, etc. She's like the tv show cliché: 'I refuse to be ill!' while pulling out the IV tubes and storming out on sheer willpower. It started to come across frustratingly ableist. The way medical personnel treated her (badly) and worsened the trauma didn't help the situation much either.

Either way, it was an interesting read. And besides the point of the book but worthy of mention: looking up the Kamchatka Peninsula in google maps is a lot of fun. There are many blue dots where you can switch to google street view, but they're mostly pictures from explorers. You can see mountains, volcanoes, glaciers, forests, rivers, a lake full of bears, snow landscapes and more. It has occupied me for quite a few hours, it's so beautiful!

#AmReading #memoir #WomenInTranslation #DisabilityLit #books

I just finished writing a novel rooted in mythology, pop culture, and my lived experience as a blind, chronically ill writer (ESKD, celiac, diabetes). It’s heartfelt, weird, and full of emotion.
I’m now looking for beta readers or editors—especially fellow LGBTQIA+ and disabled creatives!
Help me make it shine.

https://docs.google.com/document/d/10NskEXMNbBErcgH2-LHVSCBhgql6_G2ztQznoNeWpjs/edit?usp=drivesdk

#WritingCommunity #AmWriting #DisabilityLit #QueerWriters #BetaReadersWanted #ChronicIllness

📗 "Mourning a Breast" by Xi Xi, translated from Chinese into English by Jennifer Feeley

Originally published in 1992, apparently this was one of the first Chinese-language books that openly talked about breast cancer. The author discusses her diagnosis and treatment (mastectomy & radiation), but also just about everything else in her life. The information about cancer might be kind of general knowledge by now, but gives some insight on how taboo and unfamiliar it still was some 30 years ago.

This is one of those memoirs that might suit fiction readers more than people who mostly read non-fiction. The author really follows her interests and thoughts into anything. When you're in the mood, it reads like sitting on a park bench next to an interesting lady who's telling you the most fascinating life stories and you can't wait to hear more. When you're not in the mood, you feel like a cashier and this kind old lady just won't stop talking and the line of customers is getting longer and longer and longer and please, please get on with your day, ma'am!

Funnily enough Xi Xi very much knows her reader, and she doesn't mind you getting impatient or bored. Sometimes when things go on for too long, she gives you hints on where to skip to in the book to get on with her original recounting of her cancer. You go on ahead, I'm not done yet watching the grass move in the wind! She doesn't give a shit, haha.

There's an afterword by the translator that gives a little more context. I was sad to read that Xi Xi passed away in 2022 (not due to cancer) during the translation process, so she never saw this English edition completed. In the book she often talks about English-Chinese translations and comparing international translations for fun, so I assume it must've made her excited to see at least the work getting started.

#AmReading #memoir #WomenInTranslation #DisabilityLit #NYRB

📙 "De volgende scan duurt vijf minuten" by Lieke Marsman

A Dutch poetry collection that, to my great surprise, is also available in English as 'The Following Scan Will Last Five Minutes'.

It's very, very short, but the poems are great. They touch on cancer treatment, left-wing politics and some typical Dutch experiences. The book concludes with an essay, which was okay. Not bad at all, but a little bit out of place for me, because I was yearning for more poetry.

I was able to read a few translated poems through samples and previews and... I don't know. I don't think anyone could have translated them better, they're done well. But because I can read the Dutch ones, maybe I get too stuck on the few things that got lost in translation. I still don't know how we could ever translate "lotgenoten", but "sufferers" really isn't it to me.

Still, I'll be saving and rereading the poems.

#DisabilityLit #poetry #AmReading

📘 "Hunchback" by Saou Ichikawa, translated by Polly Barton

Whenever there's disability lit, I come running. Just kidding, I can't run, but you'll hear the quick tap tap tap of a cane coming closer rather quickly.

I haven't mentioned it here before, but I have a MSc in sexology. My main interest was the overlap between disability and sexology. I did my thesis research on how sex changes within relationships after specific cancer treatments. I don't work in the field, because it was extremely inaccessible and ableist. The pandemic worsened that sentiment x10. All that to say: although my quality of life is way better after saying fyoubye to the world of sexology, I'm still quite passionate about the intersection of sex and disability. I get excited when a novel comes out with these themes. This post is not really going to be a review, more of a mind wander. But connecting all sorts of new and old thoughts is a sign of a good book, right?

I had heard a lot about the book before reading and developed fears because of it:

- I'd heard that the disabled protagonist would pay for sex or a relationship of some kind, and I was scared that it would once again be a story that would enforce the idea that disabled people are unlovable and that love or sex are only possible for them through financial transaction, because nobody would engage in that out of free will without compensation.

- I'd read that the protagonist would desire an abortion, so I got nervous that it would be insensitive to the many years disabled people had to fight for reproduction rights, and that it would play into eugenics.

- I'd seen from a quote that the protagonist was wealthy, and immediately expected to be disappointed, that stories of disability would only be possible on a cushion of money, else the story could only be about perishing.

- I'd heard that there would be a sexual relationship with a caregiver, so I got stressed that this book would trample over the difficult topic of frequent sexual abuse that happens in care homes.

- Considering the title, I was scared that this book would indulge in freakshow aesthetics for the abled viewer, like all those 'disfigured' people as monsters in every piece of media out there, either disabled as punishment or evil because of their disabledness.

There were more fears, but you get the point. There's a lot to think about in criplit and most get it wrong. But I was silly for worrying. This book did not fall in any of those holes. It had massive fun pointing them out, jumping over them, pretending to fall but never really doing so, waving at me and laughing in my face for grabbing my pearls every time. It's so well-layered and aware. It proved to me that texts can be controversial and difficult, with problematic characters and red flag interactions, without it automatically being at the expensive of anyone disabled. I love it. I hope the author keeps publishing. And I hope early reviewers will learn to promote books in better ways so I'm not fearing them as much beforehand.

There were moments of surprise and laughter:

"Oh my god, I thought immediately, he's a creep. He’s self-identifying as a beta male. He's probably an incel. Fuck!"

And rants about physicals book had me nodding along:

"Here I was, feeling my spine being crushed a little more with every book that I read, while all those ebook-hating able-bodied people who went on and on about how they loved the smell of physical books, or the feel of the turning pages beneath their fingers, persisted in their state of happy oblivion."

I read >95% through (e-ink) screens on lightweight devices. Recently I saw a post that said something like 'ereaders might be handy for thick books, but there's nothing like holding a massive book and feeling the real progress that you're making!' and sorry to admit, I rolled my eyes and thought 'well, good for you, bitch'. We all need a vent sometimes.

Other parts brought out a lot of sadness: "I wanted to catch up", and "I probably didn’t have that many chances left at becoming a person". How often had I thought such things about myself? How long it took to switch my view of myself, and how easy such things come rushing back in the right (wrong!) circumstances...

I liked the humor with bitter undertones, the winks to the reader when the text gives in to toxic societal views. But it was also a little hard and sad. I feel like, even if you exceed expectations and go beyond the limits set up for you, behind them there will be another fence, and another. Can you really own or tell your own stories? I'm not sure.

Anyway, I'm nearing the character limit, oops! I'm happy it's pushed forward as good disability lit, but I'm also sad by everyone focusing in on it so much, as if that's all there is to it. And I'm guilty of that too, albeit out of enthusiasm. I don't want to let it go unsaid that this is a well crafted tale with a fantastic translation! Okbye!

#WomenInTranslation #DisabilityLit #InternationalBooker

📗 "Goupil ou face" by Lou Lubie

The English translation is called 'A Fox in My Brain'. It's a graphic memoir about living with cyclothymia (bipolar III disorder).

Although it's labeled as a memoir, that aspect really takes a backseat. It's more of a general explainer about cyclothymia. I thought it was okay, good but not great. I think that's mainly because I don't appear to be the target audience. This might be a great book for anyone just diagnosed, seeking to get diagnosed, or for anyone who has someone in their life struggling with this and you wish to understand them better.

Like all Lou Lubie books up till now, the art was great. I love how her style is a little different in every book. Here black/grey/white are perfectly contrasted with orange/peach/red to show the highs and lows. The various personified forms of the different types of bipolar disorder were (oddly enough?) very cute (until they became threatening /hide ).

#AmReading #GraphicNovel #books #DisabilityLit #memoir

📗 "Gargoyles" by Harriet Mercer

I liked this overall, but it was a bit of a hit and miss situation too.

This is a very well written memoir and essay collection combined into one. Mercer tells about her many months in the hospital after an abnormally large angiomyolipoma on her kidney started bleeding and filling her abdomen with blood. She's in critical care for a time, then starts rehabilitating slowly.

Like any hospital/sickness/disability memoir, there's time given to the mistreatment of patients by medical personnel, which is painfully relatable and tough to read. Fairly new in my reading life: it was interesting to see how good and bad relationships can develop with hospital roommates. Some patients and interactions really stressed me out. With these cases, you can see how overworked nurses are and what tough situations they have to deal with (although this doesn't excuse the neglect and harm they cause, etc.).

Grief and loss appear in different shapes throughout the book. The parts about her partner's death (after only being together for 5 months) made me tear up. I think she wrote these fragments beautifully, with much care and tenderness. I also can't stop thinking about her father's death. I wonder how many of us will have to live with such memories.

The essays mixed in sometimes worked really well and sometimes made me question 'why? how does this fit?'. At times they didn't feel like an analysis, but like a distraction to avoid digging deeper into oneself. Although the memoir is very honest, I still sensed a wall. How does the author cope with almost dying? What does it feel like, realizing bodies are such fragile, temporary things? How does one mentally rehabilitate as well as physically? What is it like to suddenly be so dependent? It's all there in the box, and the corner of the lid is lifted so we can peer in a little, seeing the gargoyles too, but the lid is never fully removed and we're not staring straight into the heart of the matter. I'm not sure whether it's because it's too private, or because the author simply doesn't want to fully look at it yet either. Maybe requesting it makes me sound a little like a disaster tourist, but I really yearn to read about such reflections because it's what I personally connect with most.

#AmReading #memoir #DisabilityLit #NonFiction #books

📗 "Growing Up Disabled in Australia" edited by Carly Findlay

This is an anthology with more than 40 contributors! There's mostly memoir-esque essays, but also some poems, letters and even a comic.

I was pleasantly surprised by the diversity of the collection. Some of the topics discussed are MS, EDS, blindness, deafness, ME/cfs, cystic fibrosis, cerebral palsy, autism, ADHD, and many more. The social model of disability is the general approach for most of these, and there's room for all disability, chronic illness and neurodiversity, no matter if the person themselves or only society regards it as a negative or not.

Because there's a range of ages, you're just as likely to read about a very recent school experience as a post-war polio treatment for children. There's views into (the problems with) special education and institutionalization of people with intellectual/learning disabilities. Happy childhoods and traumatic youth memories all come to pass. Racism against Aboriginal peoples, sexism in healthcare, discrimination in public spaces... Some chapters were extremely relatable for me, some were completely new impressions. Parts of this are of course very Australia-specific, but a lot is universal too.

I think this anthology has a good balance. Like any big collection, the quality of writing varies quite a bit. But that didn't stop me from appreciating the contributions. Some made me cry, while other made me laugh out loud. I wish every country had a book like this, I'd definitely want one for my own country of birth.

#AmReading #DisabilityLit #NonFiction #books #bookstodon

📗 "The Covid Safety Handbook: Staying Safe In An Unsafe World" by Violet Blue

Early happy almost release day to the Covid Safety Handbook! I was a kickstarter backer for this title, so of course I'll be at least a little bit biased. But I'll try to be honest and clear about what you can expect from this handbook, and then you can go on your merry way and preorder it now or purchase it from November 26 (2024) onwards.

If you think covid is gone or no big deal, this book is for you. If you have any doubt or questions about covid, or wonder why some people still mask or why you keep getting sick, this book is even more for you.

The handbook goes into the basics of the spread of an airborne disease and what can be done to limit its spread. It discusses mask use, ventilation, filtration, vaccination, and more. It shows how these things can be put into practice, along with tips on how to travel, how to talk to your family, how to resist peer pressure or gaslighting and handle hard emotions, etc. It shines a light on Long Covid as one of the most important possible consequences of infection. It takes the topic seriously, but is written is a very casual way as to make it as accessible as possible for any reader.

If you're a covid cautious veteran with a drawer full of respirators and a CO2 meter standing near your Corsi Rosenthal box right now, you'll probably not learn anything new from this book (but read it anyway, so you know what kind of material is out there to recommend!). Maybe you'll be a little annoyed that Blue motivates the reader to do whatever it is that they can do, instead of immediately going all the way to being a hardliner (I sometimes was). But honestly, I think someone's got to take this approach. Many people want to take small steps and are easily scared off by tough talk or shaming. Maybe this book is the gentle introduction someone needs to get going and research by themselves even more.

What I appreciated a lot was the author's acknowledgement of the disability movement, their knowledge and the way they've been uniquely targeted by the ableism of the pandemic response. This never overshadowed the general message that covid is bad news for everyone, but is still important to understand in my opinion.

Like almost every English-language covid information source, this is mostly US-centric. You won't easily get the brands mentioned on most other continents. There is some level of assumption that the US set the tone for how we handle covid and every other country simply followed. It's probably a hard thing to avoid if most accessible, quality English information sources reference each other and expand, but don't often interact or exchange with other languages and countries. I think anyone in a non-native English speaking country is used to this and can adapt. It really isn't that bad, and it doesn't devalue the text or its message.

Lastly, if there's ever a second print or a revision of some sorts, I'd love to see these additions:

- Mentioning FFP3 masks and their safety grade (since FFP2 does get explained)

- A chapter about mask bans and how to deal with them or prepare for them, maybe with tips and mask alternatives (such as the BPR by Sam Hall)

- There's lots of tips for relatively rare situations, such as going on a plane or staying in a hotel. I'd like to see a little more attention for how to keep masking in difficult everyday situations such as job interviews, hostile workplaces, when living with people who refuse to take any precautions, etc.

Tl;dr: Please have an open mind and look into this book. It's a good resource. You could learn something valuable about protecting yourself and others. At the very least you'll support an indie publication and an author who's fighting hard to keep us safe from early death and disease.

#AmReading #NonFiction #covid #covid19 #COVIDisAirborne #CovidIsNotOver #WearAMask #MaskUp #LongCovid #books #bookstodon #DisabilityLit #PlagueBook

@pandemicine
@maskup

📘 "Revenge of the Scapegoat" by Caren Beilin

I'm not sure how to talk about this book, because I feel like I won't do it any justice. It wasn't always pleasant to read, it was confusing and strange, frustrating and boring at times, but amusing and interesting nevertheless. It's kind of funny, but only in the way that life is so absurd and tragic that you can't help but laugh.

The main character is the scapegoat of her family, and the book is about her re-receiving letters from her abusive father. It's about both escapism and confrontation. If you're someone who avoids contact with certain family members too, the stress of the protagonist's situation really starts to creep up on you.

There's also a slight focus on the character's rheumatoid arthritis and the chronic pain that comes with it. The way she copes with this, or rather, the way she frames it in daily life is certainly the goofiest part of this whole book. That and the nazi cows.

My favorite parts were the transcribed conversations with a character/person called Ray. Sad, but comforting.

#AmReading #bookstodon #LiteraryFiction #DisabilityLit

I recently read I’ll Be Waiting, an excellent horror novel by Kelley Armstrong. The main character has cystic fibrosis and was really well written! More of this, please! #DisabilityLit

📗 "Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders" edited by Diana Jovin

This is a collection of scientific research written by a variety of authors, readable for the general public. It's not just about hypermobility itself, but also about many others symptoms and illnesses that are frequently present with this syndrome/disorder.

It's interesting to read cover to cover, but I think it'll mostly serve well as a reference book. Or as a guide to use to look into symptoms one by one if you feel too overwhelmed to tackle everything at once.

Especially the chapters about physical therapy were useful for me at the moment. I'm keeping this (e)book around, because I'm sure I'll use it every now and then to look up certain information.

#AmReading #DisabilityLit #hypermobility #hEDS

📗 "Floppy: Tales of a Genetic Freak of Nature at the End of the World" by Alyssa Graybeal

A good, slow-paced memoir about the author's EDS diagnosis and the way it influenced her coming of age.

I was frustrated with this book at first. The author is very skilled at looking away from problems and suppressing anything uncomfortable. I felt like yelling: "Please, don't ignore that symptom! No, just talk to your wife! Aaah, think ahead first!" But the author saves it by hinting with her future self that there comes a time when she can't bury her head in the sand anymore.

And that point does arrive in the second half of the book. It's an interesting transformation in her personality to be able to observe. It was painful to see her finally confront her family, only for us to learn that she was never the first to have such avoidant behavior.

Overall this was a good read. If you have EDS, HSD, or any related issues like POTS, dysautonomia, chronic pain or fatigue, parts of this book will be extremely relatable. The afterword was kind of depressing to read in 2024. Besides telling us about her recent series of strokes, the author expresses hope that the gains in accessibility from the early pandemic years will stay, although most things mentioned have been actively removed by now. Sigh.

#AmReading #NonFiction #DisabilityLit #books #memoir