Si Bengkok

by Saou Ichikawa, Dewi Anggraeni (Translator)

Si Bengkok adalah cerita tentang Izawa Shaka dengan kondisi tulang belakang yang melengkung berbentuk huruf S. Hal yang membuatnya menjalani kehidupan terisolasi di Group Home mewah milik keluarganya yang menampung orang berkebutuhan khusus.

Di tengah kondisi tersebut, ia mencoba menggugat berbagai hal yang selama ini tabu, menulis cerita-cerita stensil dewasa, mencuitkan perasaan terdalamnya di media sosial yang dianggap menyimpang, hingga bagaimana kenormalan bagi banyak orang adalah sesuatu yang tak bisa ia jangkau.

Si Bengkok merupakan novel debut karya Ichikawa Saou yang meraih anugerah sastra Akutagawa ke-169. Buku ini menjadi karya pengarang difabel pertama yang meraih penghargaan sastra prestisius tersebut.

Genres: Fiction, Japan, Contemporary, Literary Fiction, Disability, Japanese Literature, Novella

90 pages, Paperback

First published June 22, 2023

About the author

Saou Ichikawa graduated from the School of Human Sciences, Waseda University. Her bestselling debut novel, Hunchback, won the Bungakukai Prize for New Writers, and she is the first author with a physical disability to receive the Akutagawa Prize, one of Japan’s top literary awards. She has congenital myopathy and uses a ventilator and an electric wheelchair. Ichikawa lives outside Tokyo.

Reviews

[Alwynne · Rating 4 out of 5]

July 26, 2016 is the date of one of the deadliest attacks in Japanese history. After breaking into a care facility in Sagamihara, just outside of Tokyo, Uematsu Satoshi murdered 19 disabled people, and injured a further 26. Actions he later justified as “mercy killings” of people he characterised as unable to fully participate in society. His victims received remarkably little attention in the mainstream media - compared to those who’d died in other killing sprees on Japanese soil. But the date, and aftermath of Uematsu’s crimes, retain significance for Japanese disability activists: eloquent examples of discriminatory attitudes and an accompanying culture of silence. These aspects of Japanese society are part of what Saou Ichikawa sets out to confront in her award-winning variation on a protest novel.

At the centre of Ichikawa’s semi-autobiographical novella’s narrator Shaka Izawa. Like Ichikawa herself, Shaka was diagnosed during childhood with a form of congenital myotubular myopathy and is now in her forties. Shaka’s an extremely wealthy orphan with a studio apartment in a group facility she inherited, named Ingleside in honour of her love of Anne of Green Gables. Ichikawa’s arresting narrative is set during the Covid pandemic, and presents a highly-detailed portrait of Shaka’s everyday life underlining the specificity of her situation: emphasizing her individuality rather than confining her to membership of an amorphous grouping dubbed “disabled.” The vast majority of Shaka’s time’s spent inside the apartment where an array of mobility aids and medical equipment supports her existence: allowing her to breathe without suffocating from the mucus constantly clogging her lungs. She has no visitors other than care workers and facility employees, although she sometimes eats in the facility’s communal dining room, eavesdropping on fellow residents. But Shaka’s keenly aware of her outsider status, someone who disrupts society’s rhythm in a Japan that works on the “basis disabled people don’t exist.” She wryly refers to herself as “monstrous hunchback.” She’s enrolled in in a distance-learning degree which has the added attraction of affording her the “acceptable” title of student.

However, Shaka has a series of secret online identities. She contributes ‘kotatsu’ articles, composed from secondary sources, promoting adult entertainment including ‘happening’ bars designed for anonymous sexual encounters. These writings overlap with fictional erotica, and provocative tweets related to Shaka’s frustrations, sex, and disability. A means for Shaka to experiment with, otherwise inaccessible, desires. But when care worker Tanaka links Shaka to her online personas, his attempt to use this information to extort money provides an opportunity to act on her fantasies. Through their transgressive interactions Ichikawa confronts taboos and stigmas surrounding explorations of disability and sexuality. But their vastly different economic status, comparatively-impoverished Tanaka versus ultra-rich Shaka, raises further questions of relative privilege and power: it’s never entirely clear who’s the abuser and who’s the abused in this relationship. It’s a complex, unsettling storyline which anticipates, and resists, any temptation to position Shaka as automatically without agency – an all-too-common assumption underlying numerous depictions of disabled people. Although Tanaka, with his overwhelming air of “ressentiment,” also conjures elements of the prejudice displayed by certain quarters of the non-disabled community.

Ichikawa’s influences include Kenzaburō Ōe and Masahiko Shimada; like Shimada, Ichikawa’s unconventional novella plays with genre boundaries, framing Shaka’s narration with extracts from Shaka’s erotic journalism and fiction. A move which highlights the artificiality of narrative and forms of representation, feeding into Ichikawa’s own concerns about storytelling and disability. It's a gripping, erudite piece which touches on topics from reproductive rights and eugenics to mind/body dualism, to the exclusionary practices of a publishing industry that often shuns the e-book formats that make it possible for Shaka to read without pain. Ichikawa draws too on her research into the history of disability and Japanese literature; as well as paying homage to previous generations of disability activists and protestors including Tomoko Yonezu - famous for spraying the Mona Lisa with red paint while on display in Japan, calling attention to Tokyo National Museum’s policy of barring entry to anyone requiring assistance. Translated by Polly Barton.

Thanks to Netgalley and publisher Viking for an ARC

 

[Adina · Rating 2 out of 5]

Book 13/13 from Booker International Longlist. Finally tried them all. Well, I finished this in August and only got to review it in November.

No, just no. I have no problem with books that are shocking. I do have a problem with books are shocking only for shock’s sake and not to transmit anything. This novel was mostly disgusting and I cannot find many redeeming qualities. The only plus is that she is a writer with disabilities and I am glad she got published and achieved success. Although, I would have preferred if it wasn’t for this novella. I also understand that she tried to point out that disabled people are almost never viewed as having sexual needs.. However, the writing is nothing to talk about and the subject ..brrr… where to begin?

The main character, just as the writer, has a degenerative disease. Due to muscle problems, she is bed ridden and has problem breathing on her own. We get a lot of details about the hardship of her daily life, which was actually quite interesting up to a point. Quite repetitive, the constant use of the word mucus jarred me. The thing about this character is that she writes a blog where she imagines some crazy sexual scenarios. She also has aa page on Twitter (I think), where she writes some very provocative ideas. Her latest obsession is that she wants to get pregnant only to abort the foetus. It is the abortion that makes her tick. I am pro-choice, but this is disgusting. So, she does not only writes about this, she actively tries to find someone to help her make this real. There is also one oral sex scene that will forever stay in my head, it was…I don’t even want to remember. Why this got so many prizes, it beats me. Ok, in theory I understand why she wrote the book the way she did, but I do not have to endorse it. Many liked it, so if you want to find the reason for its praise, read those reviews.

[Meike · Rating 5 out of 5]

Now Nominated for the National Book Award for Translated Literature 2025
Winner of the Akutagawa Prize 2023
Longlisted for the International Booker Prize 2025
With her radical novella about the sexuality of a severely disabled woman, Saou Ichikawa, who herself suffers from congenital myopathy, was the first physically disabled person to win Japan's most important literary award. In the text, we meet a woman who lives in a home for the disabled and works as a writer - and some critics around the world see themselves confronted with transgressive literature. Is this really the case, or are readers simply not used to the graphic depiction of severe physical disabilities? While studying at the prestigious Waseda University, Ichikawa researched the representation of disabled people in literature, which inspired her to write "Hanchibakku".

Protagonist Shaka Izawa suffers from myotubular myopathy and lives in a group home called Ingleside (see Anne of Green Gables) which she owns - her parents left her a fortune. Shaka is a published author of kotatsu-fluff, teen romance and porn, and she struggles with her own sexual desire, as society perceives profoundly disabled people as asexual if not non-existent. In a provocative spin, Shaka is possessed by the idea that she wants to get pregnant and have an abortion like a healthy woman - and she pays her resentful caretaker Tanaka to have sex with her...

Ichikawa employs graphic language and detailed descriptions both for the physical impairments (like the author, Shaka uses an electric wheelchair and a ventilator) and the sex scenes, and while the premise that this protagonist doesn't dream of a conventional family, but at least wants to have the same suffering and conflict as a healthy woman amounts to a shock effect comparable to one Sayaka Murata (who is the same age as Ichikawa), I have to say that I've never read such an intricate literary account of what it means to live in a disabled body - which says a lot about societal taboo and invisibility politics. The statement regarding abortion could of course also be read as a pure lashing out, as a dark joke, and the sex that is portrayed builds the classic bridge between sex and death, but with a new spin.

So yes, "Hunchback" is a critique of ableism rendered by a person who is directly affected, and thus its political and societal relevance can hardly be overstated, but it is also aesthetically savvy: Shaka's voice is haunting, oscillating between humor, anger, and exhaustion, which makes for a psychologically deep portrait without having the protagonist to spell out everything - it's there, between the lines. This is also a text about power, and in many ways: The power of money against the power of physical health, the power of men against women, the power of representation and telling one's own story against the power of invisibility and silencing.

There are several changes of narrator in the text and a phenomenal plot twist at the end, but I won't spoil any of that. Also, we get moody ruminations about Shūji Terayama, Wagner's Der Ring des Nibelungen, Friedrich Nietzsche, feminist disability activist Tomoko Yonezu, etc. pp., until the whole thing takes a quasi-religious spin and culminates in...Gog?! I mean: What's not to love?

Great, inventive, powerful stuff, can't wait to read Ichikawa's next work.

You can listen to the podcast gang discuss the German translation Hunchback here: https://papierstaupodcast.de/podcast/...

[Helga · Rating 2 out of 5]

No...no! A thousand times, no!
Not because of disability as the subject matter, but because of the book's shallowness, ambiguous plot, disgusting sexual content, repetitions (I think the word 'mucus' is used in every paragraph at least twice) and its unrefined prose.
Or was it the translation?
I am unsettled and uncomfortable, but not in a good way. And this comes from someone who has just read an Auschwitz memoir.
This is one book I wish I hadn't read.

[Roman Clodia · Rating 4 out of 5]

Here was I, feeling my spine being crushed a little more with every book that I read, while all those ebook-hating ablebodied 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.

This may only be around 100 pages long but it's one of the most confronting 100 pages I've read. The narrator, Shaka, suffers from a debilitating muscle condition that has made her housebound with a severely twisted spine crushing her lungs and limiting her movement. She's not looking for pity but is angry about the way she and other disabled people have been written out of Japan's national narrative.

But this book is more complicated than that because Shaka also details her embodied experience, putting her body on display for the reader so that I was caught between a horrible sense of my own curiosity and a shameful feeling of voyeurism that is acutely unsettling.

To ramp up the discomfort, Shaka is immensely wealthy - she owns the care complex in which she lives and can afford the technology she needs for her online writing life and to enable her second degree. She gives away her profits in a philanthropical move - but is herself suddenly confronted by one of the care workers who is badly paid and who wants some of her cash. The whole issue of different forms of privilege and disadvantage thus explodes into the narrative and creates a transaction dynamic where it's really not clear who is abusing or exploiting whom.

I appreciated the whole way Ichikawa opens up this subject matter, not least the issue of sex and desire. She also makes disability individualised in a productive way, while making us think more widely about how it may react intersectionally with other forms of privilege or its lack.

This isn't a comfortable book - and nor should it have to be. But it is uncomfortable in the best, widening, thought-provoking way.

Many thanks to Penguin for an ARC via NetGalley.

[emma · Rating 4 out of 5]

all i've heard about this book was from readers who were blown away.

i get it.

(review to come)

[Melissa ~ Bantering Books · Rating 4 out of 5]

It’s not often a book’s ending leaves me muttering, “WTF?!?!,” but Saou Ichikawa’s Hunchback left me reeling.

It threw me for such a loop, in fact, that I turned right around and reread the second half to try to make sense of it. Still confused, I then googled the book in an attempt to gain further insight into the ending but came up empty-handed. I’m not the only person dumbfounded, it seems.

Though I have thoughts on the ending and feel somewhat confident in my interpretation of the story’s final events, the last passage is so obscure and surprising that I’m still unsure about what I read. What I do know is, I enjoyed this short Japanese novella very much – a blunt, in-your-face story of a disabled woman living in a care home who fights for her autonomy and the freedom to experience life on her terms.

Because Ichikawa herself is disabled – like Shaka in the story, she has congenital myopathy and uses a ventilator to breathe and a wheelchair to move – she writes with great authenticity. She’s all about the body, and she doesn’t shy away from describing what it means to be disabled, the physical limitations of it. The reader is given a first-hand account of daily life, like how the ventilator is used and the indignity of being unable to bathe oneself. It will make you uncomfortable. Sex and reproduction are also of great interest to Ichikawa, and, in this regard, she taps into the voyeuristic nature of humans, somehow making me feel as if I’m privy to a story that perhaps I shouldn’t be.

But most compelling is the case the author makes for Shaka’s right to live and have unique experiences, despite and alongside her disability. What the character fantasizes about is unconventional to be sure – I foresee it riling up a number of readers – yet I found it to be provocative in the best way. A book like this, one that stirs discussion about the most difficult of topics, is good stuff.

I love what Ichikawa does here. I wish more authors wrote with the same courage and frankness.

[Maxwell · Rating 3 out of 5]

A very short, very strange little novel that follows a woman who lives in a care home and pushes the edges of societal expectations especially for those living in bodies with disabilities. It's quirky and wry and also a bit charming at times. But I just felt that it wasn't quite enough material for me to love it. It was only 90 pages and explored some interesting ideas around inner peace, the physical versus spiritual, and the roles we play in a larger context. I just wish it had been a bit meatier to allow us to sit with character longer and continue to push these themes further.

[Khalilah D. · Rating 4 out of 5]

3.5⭐️

[Yuko Shimizu]

I am glad I read it, but I never want to read it again.
Be ready, and I recommend you read this at least once because I am sure it will get translated into your language as well, and it is going to be all the rage: a novel about a woman with a serious physical disability written by a woman with the same serious disability. Well, it is not just about that though.

The protagonist (and the author herself) fully and absolutely rejects to either become an inspiration (typical) or pitied (also typical) for her/their disabilities. She is just fully human like anyone else. As simple as that, yet, fresh and powerful. Also, her depiction of the main character's resentment toward often unnoticeable but very real privileges of able-bodies is so real you can't stop thinking about it.

Why I never want to read this again is not because it is sad or depressing (the book is not), but because the sexual context is just as gross as some of the grossest books by Ryū Murakami which I am not a big fan of. (I like his non-gross books, FYI).

PS: not a spoiler, but the confusing ending... I read a few different reviews in Japanese, and my favorite interpretation of the ending is that the last part is the protagonist writing her own fiction. There are a few other interpretations, so you can pick what it suits you, but this was my favorite one which made the most sense to me. (The confusing ending was discussed during jurying of the Akutagawa Prize as well, which she ultimately won. )

PSS: this is so hard to rate, so I won't give it any stars for now.

[Sunny Lu · Rating 4 out of 5]

Honestly preverted and insane but Japanese translated literature always is

3.5

[Flo · Rating 3 out of 5]

Longlisted for International Booker Prize 2025 - It is so rare to encounter a person with a disability being sexual in a book. I only remember Mishima doing that. The sensibilities of the modern audience are different, but Hunchback also wants to shock and, maybe because it is so short, it doesn’t do much else. The comparisons with The Convenience Store Woman are an exaggeration, but there are some signs that it could have been more than just a curiosity.

[emily ♡ · Rating 1 out of 5]

I was intrigued by the reviews for this book but after reading I have no idea what all the hype was about. It’s great to see a book about the experiences of a disabled person out there but this book has no substance at all. There is no real plot and the writing is mediocre at best. Sorry not to have enjoyed it more.

ARC obtained from Penguin General UK via NetGalley.

[Henk · Rating 3 out of 5]

A novella featuring a main character who is suffering from myotubular myopathy, severely limiting her agency in the world and to be seen as a sexual being in society.
to live, my body breaks

Hunchback allows us to follow the life of Shaka Izawa. In the care home, owned by her due to the inherited money of her parents, she lives a regimented life where infection and asphyxiation are permanent threats to her life. Reading physical books is torture and her studying is the only connection to society. Covid-19 doesn't make the situation any easier, and then one of her carers turns out to be a self-identified beta male and probable incel. Meanwhile her twitter and side gig as a writer of erotica contrast starkly to her physically chaste life. She is an interesting character, who directly comments on the expectations society projects on disabled people:
I had to assume that people didn’t know how to respond to a more or less bed-bound woman with a serious disability who’s constantly tweeting thing like: In another life, I’d like to work as a high-class prostitute.
Or:
I’d have liked to try working at McDonald’s.
Or:
I’d like to see what it was like to be a high-school student.

The intersectionality of her disability and her financial status is a tension that I haven't seen explored in other works, and with which the main character directly engages: I’m a 165 cm woman born to tall, attractive parents with platinum credit cards. If I wasn’t disabled, the world would have been my oyster… whatever that means.
Overall, I think I expected some more closure and clarity at the end (which is thought provokingly executed!) of this prize winning book than what Saou Ichikawa gives us.

Nonetheless a fascinating account that draws attention to the myriad ways the world is not inclusive to people with a disability.

Quotes:
If when moving about inside this one-room flat of mine, I always planned each and every movement meticulously before getting up.

He’s self-identifying as a beta male. He’s probably an incel! Fuck!

When you’ve got no money problems and plenty of health problems, you end up living a very chaste sort of existence.

To live, my body breaks.

Disabled people were not sexual beings - I had assented to the definition that society had created.

The appropriate distance between us was one that allowed him to pity me.

Being able to see; being able to hold a book; being able to turn its pages; being able to maintain a reading posture; being able to go to a bookshop to buy a book –  I loathed the exclusionary machismo of book culture that demanded that its participants meet these five criteria of able- bodiedness. I loathed, too, the ignorant arrogance of all those self-professed book-lovers so oblivious to their privilege.

Here was I, feeling my spine being crushed a little more with every book that I read, while all those e- book- 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.

The publishing industry is rife with ableist machismo. The world of sports, which all those literary types who play up their physical weakness display so much vitriol for, has in fact done far better at affording a space in its corner for those with disabilities.

[John Caleb Grenn · Rating 5 out of 5]

This is why we read books!!! Incredible and weird and risky and spicy and emotional and angry and funny. Fantastic.


Hunchback
@hogarthbooks - thank you for the review copy! Out March 18th.

Wise, wry, full of firecracker prose and acerbic wit, Hunchback does two things at once: it shocks the reader, sending you laughing at the book and at yourself as it simultaneously sends tightly controlled, searing blows at ableism.

Strangely enough, I think the best word for this novel is that it’s GENTLE. Gentleness holds a false connotation for timidity—when rather it is the effect of immense power and strength wielded with disciplined, delicate control.

I will say— Hunchback is The Timid Bookstagrammer’s nightmare: is someone out there brave enough to negatively review a book like this even when it all but blatantly, rhetorically asks you if Amazon is doing a better job at supporting those with disabilities than you are? If your bookshop strolling reels, your balancing high bookstacks on thin wrists, or your tall ladders and taller shelf porn are actually just symptoms of a much larger, deeper ingrained ableism that permeates all of book culture? Yeah. Come here to get called out when you’re ready for some introspection.

Lucky for me, this jumped right up to my top 3 of the year so far, so it’s going to get hammerpraised for the foreseeable JC future as I found it perfectly paced, exceptionally insightful.
Brash. Sexy. Disgusting. Hilarious.
I $%&?*ing loved it.

I’m lucky too, in that this hits about a million little personal things I just crave in a book as it hits all the notes of both a stark nihilism in chorus with a deep sense of humanism. Hunchback is that sort of novel for the underdog that anyone and everyone needs on their shelf. Instant classic, if you will.

The ending is (wild bonkers crazy insane out of left field blah blah blah) perfect. It’s a clear effort of hard won WRITING as it shows a deft flick of the wrist creating an incredible sense of ambiguity that brings the whole novel into a new light while it also spins it into a blurry unfocus. For this book, I stand firmly on the side of the ending being exactly right. Forget your “interpretation,” this stands alone as art by itself.

[Marion · Rating 3 out of 5]

2,5 - 3 🌟
Nach der Literat-Buchbesrechung vom 17.09.

Für mich ist es immer schwer Literatur, zu einem wichtigen und schwierigem Thema, zu bewerten.
Hier handelt sich um das Thema "Behinderung" - Hunchback " in der Übersetzung "Bucklinge" geschrieben von der Japanerin Saou Ichikawa, die selbst diese Behinderung hat. Sie hat diesen Debütroman in einem Land geschrieben, in dem es eigentlich keine Behinderungen bzw, Behinderten gibt. Also ist es dort umso wichtiger mit diesem Buch "Gehört zu werden" und dieses Thema sichtbar zu machen. Preisgekrönter Bestseller in Japan ? Auf jeden Fall !!!
Jedoch bewerte ich für mich Bücher immer auch nach Sprache, Aufbau etc. Leider konnte mich dadurch dieses Buch literarisch nur wenig überzeugen.
Wie hat Charlotte so schön gesagt, ihr wäre hier ein Essay lieber gewesen und damit gehe ich konform.

[Jessica Woodbury · Rating 4 out of 5]

Such an interesting Japanese novella. Ichikawa takes many popular elements and tropes from Japanese fiction and presents them through a very uncommon protagonist, Shaka, a middle aged disabled woman. This is a bold book that is willing to dive into the grotesque and the titillating to force you to see Shaka not just as a human being but as a person who is capable of difficult and uncomfortable acts and thoughts and desires.

Writing about disabled characters is still so limited in the US, there is little to compare this book to. I thought of Greenwell's Small Rain several times, because this book is also very committed to detailing the minute acts of the body and what it requires. Ichikawa does not want to hide or obscure Shaka's body and what it requires, she is not trying to present Shaka as somehow more than or better than her body. She is matter-of-fact, which is its own form of rebellion.

[Paul Fulcher · Rating 4 out of 5]

Longlisted for the 2025 National Book Award for Translated Literature
Longlisted for the International Booker 2025

Outbursts that ran counter to society’s rules disrupted its rhythm. They startled people, in the same way that my ungainly limp did. Speaking about one’s desire to kill a foetus was of a different order of magnitude to the light- hearted dirty jokes of a 56- year- old man with a spinal cord injury. Of course, the tweetings of a hunchbacked monster would be more twisted than those of someone with a perfectly erect spine. With my eyes on the effortlessly straight spine of the young man pressing a peeled Kyoho grape into the mouth of the man who could only move from the head upwards, I snapped the backbone of the miso mackerel I’d just eaten cleanly in half with the tips of my chopstick.

Hunchback is Polly Barton's translation of the novella ハンチバック (a phonetic rendition of Hunchback) by 市川沙央 (Saou Ichikawa). The original won the 169th edition of the prestigious Akutagawa Prize in January 2023, one of the judges saying (as translated by the media) that "she critically dismantled social norms and etiquette through the use of the protagonist's difficulties" and another that it "critically knocks down conventional wisdom and common sense centered on able-bodied people", and the author questioning why it had taken so long for a person with a disability to win the prize.

This is a compact but powerful and provocative work, which the author has said is 30% based on her own experiences, but primarily fictional. There's a good take, based on the Japanese original but from a blog written in English, here.

The narrator, Shaka Izawa, is in her early 40s (born in 1979, the novel is set in the early post-pandemic period). She suffers from a severe congenital myopathy, with severe S-shaped spinal curvature that leaves her with difficulties breathing. From a wealthy family (and conscious of that element of privilege) she lives in a care home which her parents created and bequeathed to her, which also caters for other patients.

Largely confined to her room and the home, she occupies her spare time with online studies (which enables the narrative to include various references to the literature on disability) but also with writing erotic fiction and (fictionalised) reportage, although she donates the money earned, which she doesn't need, to charity, all done under various alises:

These were the kinds of thoughts that pervaded my brain, whether or not it was experiencing an oxygen shortage. Yet in my daily life, I passed for the young, silent, serious disabled woman Shaka Izawa. That was why I kept on releasing into the world all those vulgar, immature, unreasonable thoughts via my Buddha and Śākya accounts. Those words were born from the slimy, gunky sludge of the swamp, the mud out of which the lotus flowers grew. Without mud, the lotus could not survive.

Two pieces of her erotic writing, the first where she reports (as a man) on a visit to a swinger's club, bookend the story.

She also, under her own identity, sends provocative tweets, notably one which, after a thread discussing how she could conceive, even if she could not carry to term:

My ultimate dream is to get pregnant and have an abortion, just like a normal woman.

She sees this as reversing both the issues handicapped people in Japan have had getting reproductive rights, and recognising the activists, such as Tomoko Yonezu and Yūho Asaka who fought for it, but also the casualness with which people abort foetuses seen as abnormal:

What emerged from this was the foundation of the reproductive rights of disabled women, and Yūho Asaka’s Cairo speech, where she proclaimed that the state was robbing disabled people of their right to have children. In 1996, the law was finally amended to acknowledge that disabled people could also reproduce, but the developments in reproductive technology and its commodification have seen the killing of disabled children become a relatively casual undertaking for most couples. In time, it will doubtless become even cheaper, even less of an event. Given that, it wouldn’t matter if a disabled person tried to get pregnant specifically to have an abortion, right? Wouldn’t that finally balance the scales?

Another topic about which the narrator (and the author) is passionate, is ableism in the literary world, even in the very act of reading, where for her the very act of reading a physical book is literally suffocating:

Holding in both hands an open book three or four centimetres in thickness took a greater toll on my back than any other activity. Being able to see; being able to hold a book; being able to turn its pages; being able to maintain a reading posture; being able to go to a bookshop to buy a book –  I loathed the exclusionary machismo of book culture that demanded that its participants meet these five criteria of able- bodiedness. I loathed, too, the ignorant arrogance of all those self-professed book-lovers so oblivious to their privilege.
[...]
Here was I, feeling my spine being crushed a little more with every book that I read, while all those e- book- 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.
[...]
The publishing industry is rife with ableist machismo. The world of sports, which all those literary types who play up their physical weakness display so much vitriol for, has in fact done far better at affording a space in its corner for those with disabilities.

Which makes for an interesting contrast with the also Booker longlisted Hunchback whose antiquarian book dealer narrator won't buy a book until she's physically held it in her hands:

I very quickly developed a certain instinct for the books, a feel for the paper, an eye for the quality of the printing, for a well-crafted binding. I don’t know what it is, but it’s almost physical, like an inchworm testing whether a leaf is worth creeping across, or a bird listening to insects moving in the bark of a tree. It might be a detail: the sound when you flick through the pages, the feel of the lettering, the depth of the imprint, the saturation of the colors in an illustration, the precision of the details in a plate, the hues of the edges.

This is not a book for the faint-hearted. Many of us will be, rightly, skewered in our 'happy oblivion' to our able-bodied privilege; the narrator describes the mechanical processes and struggles simply to stay alive matter-of-factly but unsparingly, such as the constant need to suck out phlegm from her respiratory system; and the novel is sexually explicit, the last two coming together in one memorable scene , where she pays her male carer to have sex with her in pursuit of her 'dream' but first insists on performing oral sex on him. She finds the act itself straightforward, as she notes that, have a tracheotomy, she doesn't actually use her mouth or nose to breathe, but then nearly chokes to death on his semen which enters her lungs and hospitalises her.

But it's a book that needs to be read.

I would say a strong International Booker contender, but I wonder if it will be deemed too short (stoppress: fortunately these judges appreciate short books!)

Thanks to the publisher via Netgalley for the ARC

The judges' take

Who is permitted to feel – and be – desired? Saou Ichikawa’s short, razor-sharp novel – exquisitely distilled into English by Polly Barton – features a protagonist with disabilities who lives in a care home near Tokyo. Born with a congenital muscle disorder, Shaka Isawa has severe spinal curvature, and uses an electric wheelchair and ventilator. She is, as the cool kids would say, ‘very online’ – tweeting passionately and posting erotic stories – and her anxieties range from the existential to the sexual. A provocative and powerful indictment of ableism and sexism, this unapologetic, unashamed and unflinching novel defiantly dismantles societal and moral assumptions about disability as it leans into pleasures of the body. In around a hundred pages, Hunchback grips the reader with its raw, fizzing, subversive energy, even as it shakes off shackles — both physical and mental. A book that moved and thrilled us.

[Matthew Ted · Rating 1 out of 5]

It did make me feel uncomfortable, as it set out to do. It also made me feel ashamed, because, as Ichikawa's narrator points out, disabled women are not seen in a sexual way. So I appreciate and respect the book as a mirror for the reader to see how they do, unconsciously or subconsciously, have some prejudices.

That said, I found the empty storyline holding these ideas together uninteresting. The writing is poor (or perhaps the translation), with emojis and things like, 'He's self-identifying as a beta male. He's probably an incel. Fuck!' I read it in under two hours, but I didn't particularly enjoy any of it, and was impressed by even less.

[Traci Thomas · Rating 5 out of 5]

I really liked this little novella. It is twisted and ambiguous and thought provoking. I loved the sex, power, and privilege play around disability. It starts with a bang and keeps you locked in throughout with an ending that sticks with you and is haunting as hell.

[Hannah · Rating 4 out of 5]

Short book I think I'd like to reread. There aren't enough books out there by and/or about the disabled community. So that's one reason I'd like to reread it, but also, it's unexpected.

Shaka has myotubular myopathy, a severe congenital muscular disease that causes a lot of atrophy, making muscles very weak and breathing difficult. She is unapologetic and wants to live the way she wants to live and live the life she wants to live. Her outlook is a bit wild, and she feels like she's entitled to all the things in life other people get to have - like a child. Ableism is something that would prevent most people would never think someone with her disabilities would/could/should even conceive a thought about.

Shaka is "lucky" to be living in group home. I say lucky, because ableism is so prevalent in Japanese culture (many parts of Asia - maybe even all) that the disabled are often hidden from society, and resources, especially good ones, never mind really good ones, are generally hard to find. In this case, she lives in California in a group home that she owns - that she inherited, a home that was created for her by her parents. So yeah, she's quite lucky. Yet, her life feels incomplete, and due to COVID, she's further isolated. Her life is largely online (ok, so that was true for most of us during COVID, but it's intensified).

The reader is never allowed to think that her disability is complete, though. While her body may be compromised, her mind is ever sharp, as is her libido. Her privilege can only take her so far, but she takes it as far as she can. Seeing her exercise some of her power is good to read, even if the lengths she'll go to are unorthodox. However, perhaps they need to be since more conventional methods are unavailable to her.

This book made me think of my perspectives and broadened my outlook. I hope it will for others as well.

[cass krug · Rating 4 out of 5]

this is definitely best read in one sitting - the ending made me go WAIT WHAT! this is a wry look at disability and class and reproductive rights, and i don’t think i’ve ever read anything like it. i appreciate what ichikawa was able to do in so few pages, and the way she was able to balance humor with the very real struggles of the narrator. asking a lot of big questions that i’d love to see explored more deeply. i’ve read one other book translated by polly barton and i think she does a great job stylistically!

thank you to hogarth for sending me an ARC of this book!

[Linda Galella · Rating 2 out of 5]

I received a copy for review purposes. All opinions are honest and mine alone.


LOTS OF SPOILERS AHEAD


Without a doubt, HUNCHBACK, by Saou Ichikawa, is one of the most unusual books I’ve ever read. Presented as fiction, it’s really biofic on many levels. Both the author and main character share the same disabling condition,(myotubular myopathy), with the same affects: the need for a ventilator, regular suctioning, almost full time care, assistance needed to perform most ADL’s, a power wheelchair to ambulate and so on. She’s able to speak in a limited capacity by covering her trache and can use the bathroom by detaching from the ventilator for short periods of time, (with careful planning), able to take a few steps. It’s possible for her to sit at a desk with specific orientation of tools and use a laptop or read physical books, with great discomfort/pain.

Altho’ Shaka/MC is independently wealthy, (thanks to the inheritance from her deceased parents), she receives income from the care home she lives in and owns, earning money writing tawdry sex books and online articles while studying to finish an advanced degree. Being a student makes her “feel normal”.

It’s the other issue that Shaka thinks will “make me feel like a normal woman” that almost had me DNF this very tiny tome.
Shaka has decided that becoming pregnant and then having an abortion is the key to her achieving normalcy as a woman with a disability. There’s no mention of her seeking medical advice as to whether or not she’s physically capable of becoming pregnant or if she can, would it jeopardize her life, given the extremely precarious nature of her health. It appears that she has surmised that having a menstrual cycle equates to being able to become pregnant, sustaining it long enough to recognize the condition and then survive the abortion. Fiction or not, I find this incredibly repugnant on every level.

Shaka goes forward to realize her goal but things don’t go as planned. She definitely needed to do more research with regard to her own health and potential catastrophic consequences. Beyond that, her access to significant funds was a weapon that caused harm for which she had no apparent remorse; wretched character.

There’s a place in the book where Shaka bemoans how difficult it is to manage physical books with her disability. I found it incongruous that she, in turn, produced a book that is very difficult for handicapped people to manage in its physical form. The jacketed hardcover is 5.4” x 7.9”, 112 pgs with a retail over $20. It’s very difficult to hold, keep open and turn pages. $10 on Kindle is going to be a far better option.

How this book won the highest award available in Japan and is currently listed for a variety of awards in literature is beyond me. The idea to feature a significantly disabled person as the main character is good but the execution is sorely lacking in development. As a woman who has at times been bed and/or house bound for years, I’m dumbfounded and offended by Shaka and pray that she is not what readers will conjure up whenever they see a person in a power chair, living with a disabling condition.

The only truly positive aspect of this book is the translation - it’s great📚


UPDATE 7/26/25 - I shared this book with 2 friends. Neither had access to my review prior to reading the book nor did I share my own opinions other than to say I found the book to be “disturbing”. One woman is in her 60’s and is bound to a power chair due to a massive stroke; the other in her 50’s, gainfully employed. Both women are avid readers and in long term relationships in excess of 25 years.

My fellow handicapable friend reacted very much like I did, finding Shaka “irresponsible regarding her own life and health and void of any real human compassion.” My younger friend tho’t Shaka was “a typical rich bitch that just keeps throwing money at whatever or whoever she wants and doesn’t care what it costs, even if that means her health…or life” She then shrugged her shoulders and said, “What a f’n waste!” That’s not my usual repartee however, in this case, I agree📚


Read and Reviewed from a GoodReads GiveAway

[Sportyrod · Rating 3 out of 5]

Book club: recommended if you want a feisty debate over controversial issues.

The author and main character have a physical disability. The protagonist finds it hard to navigate a sex life and in this case, an opportunity arises under some less-than-ideal circumstances.

Should they have hooked up? Given the circumstances? Do the circumstances matter? Are people free agents or do they need protection? From others or their own desires? Ethics and morals…an opportunity too good not to take or an offer that never should have been made to begin with? Or should it?

This ‘greasy’ story is provocative. It also questions personal biases. Ableism is a major theme.

The others thought the writing wasn’t bad. We mostly got bogged down in the controversy rather than discussing the usual aspects of a book, but it was interesting.

There was a gender divide. The guys had an opposite outlook on it from the ladies.

Anyway, definitely worth it for book club. And a short, easy read for those wanting to think more on the sex lives of physically disabled people.

Ratings: 3.5, 3.5, my 3.5, 3 and 2.5 = 3.2.

[Mai H. · Rating 4 out of 5]

If you saw this on my tbr for Japanuary, no you didn't. I don't know why I make tbrs. I rarely follow them. I'd say hold me accountable, but my Taurus ass hates that.

I wasn't quite sure what I was expecting from this one, but I think I loved it. Translated Japanese literature is always hit or miss for me, and while the general complaint is that it feels cold, I get it. Or, I get this.

Shaka, and the author, are disabled. You know I love an own voices story. But don't feel bad for Shaka. She has a lot of things going on in that head of hers. The first 9% was wild. The 78% mark was wild. It's sexual. It's weird. I don't want to spoil it. Maybe go in blind. Sometimes that's best.

📱 Thank you to NetGalley and Hogarth

[Darryl Suite · Rating 5 out of 5]

Gahhh, incredible. Strange, provocative, a bit surreal & always thought-provoking. There are so many layers for a book that is less than 100 pages.

Moving, but also off-kilter.

This is now my fave from the International Booker LONGLIST. Too bad it didn’t make the shortlist.

[Heather · Rating 5 out of 5]

「本を読むたび背中は曲がり肺を潰し喉に孔を穿（うが）ち歩いては頭をぶつけ、私の身体は生きるために壊れてきた。」　
“Just to read a book, I must twist my spine, crush my neck that already has a hole bored into it, and bang up my head. My body must break in order to live.” p.46

Well, I wasn’t expecting my knowledge of swallowing, tracheostomy tubes, cannulas, speaking valves, and trach suctioning to ever come in handy for understanding anything like that ONE scene toward the end. It may be helpful for people to have a diagram that shows how a trach tube works in order to visualize the issues with speaking, phlegm and other fluids . For example, a diagram could show how occluding a trach valve with a finger works to produce adequate airflow for speech through the oral cavity.

Author Ichikawa Saou wrote a novella that she called 30% autobiographical. So it's natural that the protagonist, Shaka, has the same disability as the author. I have to admit, I felt called out when the narrator Shaka complains how a lot of the home helpers don’t know the difference between muscular dystrophy (MD) and myotubular myopathy and how that impacts her daily care. I was also just assuming MD because it’s more common, but MD is degenerative and myotubular myopathy is not. I think it's interesting that her character for the smutty stories she writes is named Mikio (ミキオ) and the disease she has isミオチュブラー・ミオパチー(pronounced miochubyuraa miopachii). Then the name Shaka is similar to the name for Buddha in Japanese and that connection comes into play in the last 5th of the novella. “Nirvana” (涅槃) is mentioned throughout the story.

As Shaka’s muscles for swallowing and breathing are weak, she has to be extra cautious when eating. Clearing phlegm from her throat can be difficult and she has frequent coughing.
「社会性のない咳きは、社会の空気のリズムを乱す。」
My abrasive coughing disrupts the rhythm of society. p. 23.
This reminds me of ableism in the form of someone complaining about an autistic person verbally stemming in a movie theater. Japan focuses so much on creating an idealized barrier-free society, but disabled people in Japan mention how often they don't feel like there's a place for them in public spaces.

You can see some of Ichikawa's wry humor and frustration with ableism in the following sentence:
「せむし（ハンチバック）の怪物の咳きが真っ直ぐな背骨を持つ人々の咳きよりねじくれないでいられるわけもないのに。」
It’s not as if my coughs from my monster-like curved body can be less rebellious than those of a straight-backed person. p. 23-24.

I recently did a presentation on disability and special education in Japan and used this quote from the novella.
「アメリカの大学ではADAに基づき、電子教科書が普及済みどころか、箱から出して視覚障碍者がすぐ使える仕様の端末（リーダー）でなければ配布物として採用されない。日本では社会に障害者はいないことになっているのでそんなアグレッシブな配慮はない。」
"Due to the ADA, you can’t even try to sell a text at an American university if it isn’t accessible such as text-to-speech readers for the visually impaired. Here in Japan, we’ve just come to act like there’s no disabled people in this country. Because we pretend not to see, we don’t have that level of aggressively inclusive legislation." p.34.

Japan has the Act for Eliminating Discrimination against Persons with Disabilities as their equivalent of the ADA to provide reasonable accommodations. While the ADA law was signed in 1990 in America, Japan's law wasn't signed until 2013 and then it took until 2016 for it to go into effect. I've seen disability scholars in Japan insist that the law is not strong enough even when amendments are being made (such as extending the law to the private sector). One just has to notice how many special needs students are sequestered away into disability schools to see that "reasonable accommodation" is something Japan is still trying to figure out. Shaka spells out how Japanese society in general is not only unaccommodating to disabled people, but flat out acts like they don't exist, basically an out-of-sight-out-of-mind mentality.
「本に苦しむせむし（ハンチバック）の怪物の姿など日本の健常者は想像もしたことがないのだろう。」
"Abled Japanese people have never even imagined a figure like me, a hunchbacked monster, stooped over struggling to read a book." p. 34.

Speaking of the titular epithet, I wonder how the Japanese public reacted to the katakana title “Hunchback.” Was it shocking? Was it confusing? I'm sure there's lots of opinions because the public at large was made aware of this book upon winning the Akutagawa prize. You'd see several copies lined up on display along with a photo of the author at the front of every bookstore in Japan for weeks after the prize was announced. I'd actually never heard the term せむし before reading this book, but after a quick google image search I saw images related to the Hunchback of Notre Dame (ノートルダムのせむし男). Upon looking up the etymology of せむし, it seems to come from the idea of looking like you have a giant bug on your back. Both せむし and ハンチバック are discriminatory words (差別用語) in Japan, but I'm curious to know what different connotations they have. In America, the word "hunchback" is also mainly associated with The Hunchback of Notre Dame and viewed as discriminatory language.

I was pleasantly surprised to see Yonezu Tomoko （米津知子）pop up in this novel on page 44. I even let out a small squeal of joy when I saw her name. She’s a disabled feminist activist from the 1970s that I first read about in Scream from the Shadows by Setsu Shigematsu. In Hunchback, Shaka thinks about Yonezu Tomoko in the clash between feminist activists who wanted reproductive rights and disabled activists who didn’t want abortion of fetuses once the parents found out the child would be disabled. With Yonezu Tomoko at the center, those two groups of activists in the 1970s came to the resolution that it’s the Japanese society to blame since society's what makes abortion of their would-be disabled child the only real option for parents. Thinking along these lines, Shaka muses wouldn’t it be fair if a disabled person wanted to have an abortion?
「だったら、殺すために孕もうとする障害者がいてもいいんじゃない？」 p. 45.

I absolutely loved how this verb for conception 孕む（はらむ）comes up again at the very end of the book. It’s used quite cleverly. The imagery and words Ichikawa Saou use create a lingering effect when you connect it all together. Red spray paint on the Mona Lisa. Red light flashing on the tv to signal brokenness. The clash between the abled and disabled, converging on the Mona Lisa. As time passes, things in museums do not decay, but why must the body? Breaking more and more, just to live each day.

The last 1/5th of the book is weird in a good way. Both the beginning and the end of the book are framed by stories separate, yet intricately linked, from the main narrative about Shaka. I was left with an impression of two sides of the same coin. Who’s to say what is real and what is a dream? Who's to say which is the cause and which is the effect?

P.S. All the above English quotes were translated by me. I'm NOT a translator by any means. I just tried to match the feelings the Japanese quotes gave me. My translation may not technically be correct, so take it with a grain of salt. I hope that this book gets picked up by a Japanese to English translator who has extensive knowledge of disability in Japan and Buddhism. Until then, I think it's good for people to know this book exists and that out of all the Akutagawa prizes that have been going on since 1935, Ichikawa was the first disabled author to receive this award. It's 2023.

[Jillian B · Rating 5 out of 5]

Shaka, a wealthy but severely disabled woman, lives in a care home. She keeps as busy as she can with her limited mobility, taking college classes online, reading endless books…and posting very provocative tweets on a secret account. Life takes a turn when she discovers she’s not the only one who knows what she’s been posting.

I loved this book. This is contemporary Japanese literature at its finest. Shaka is a dynamic, fascinating and not at all stereotypical character, and her narration had me eagerly turning the pages. I love the somewhat ambiguous and meta ending. Reading this was overall such a fun experience.

[Mohammed Al-Thani · Rating 2 out of 5]

Hunchback explores disability and desire with an unflinching perspective, but its execution falls short. While Ichikawa’s prose is evocative, the novella format limits the depth of character development and thematic exploration. The protagonist’s struggles and relationships feel underdeveloped, making the story feel more like a draft than a fully realized narrative. The abrupt ending further weakens its impact, leaving me a bit unsatisfied. Though the book raises important questions about sexuality and self-perception, it ultimately lacks the depth to fully explore them. A longer format could have made this a more powerful and immersive read.

[Spyros Batzios · Rating 4 out of 5]

On the 26th of July 2016, a man named Uematsu Satoshi, broke into a care facility near Tokyo and started attacking disabled people, resulting in 19 people being killed and then another 26 being injured. Even though this was one of the deadliest attacks in Japan, the media cover was not as impressive as it should be, raising questions about whether we, as society, consider the life of people with disabilities of lesser value and triggered reactions of disability activists. “Hunchback” by Saou Ichikawa, deals with the sensitive issue of discrimination of disabled people and exposes attitudes that are not only relevant in Japan but the greater world. The book describes in less than 100 pages, the life of a 40 year old woman, named Shaka, who is diagnosed early in her life with a neuromuscular disorder and lives in a facility for people with disabilities that she inherited from her rich parents. Shaka is severely deformed and in need of respiratory support in order to be able to survive, but at the same time she lives a whole different life online tweeting controversial opinions and writing sex stories on an erotica website. At some point one of her carers discovers her hidden identity and the book has an interesting turn related to power dynamics with an ending that left me puzzled and confused (I like an ambiguous ending but this was so open to interpretation that potentially was too much for me). The writing is simple but the sharp prose and the graphic descriptions make the experience shocking and uncomfortable (positively shocking and uncomfortable). This is definitely a book worth reading but I felt that even though the author delivers significant messages I needed a lengthier approach in order to be more engaged.

This is a book about living as a disabled person. About all those times we said I’d rather die than live disabled. The attitude of society towards disabled people and the idea that they don’t contribute to the society as much as those who are healthy. Reproductive rights or the right to abortion in view of disability. Accessibility and disability activism. A story about our perception of health and what is normal. The privilege of being healthy and having a body that society approves of. The difficulty of being bed bound, on respiratory support, having deformities and the gendered experience of medical care. A book about the anonymity of internet. Living behind the screen of a computer and pretending to be someone else while expressing extreme views. It is also a book about power dynamics, money and balance. Irritation and contempt. Getting control of someone else that seems vulnerable. About sex clubs, dating apps, the hook up culture and erotic fiction. The darkness we hide inside. Mutual understanding between the disadvantaged. Clinging to life with all the strength that you have and appreciating the things you are grateful for.


This is a 3.5-4/5 for me!


Why should you read “Hunchback”?

Because you will acknowledge the difficulties of living with a chronic disease and feel that being healthy is a luxury not everyone has.
Because you will get a glimpse of how it is to live a life knowing that you are in constant danger of dying.
Because you will realise that internet and media might give to someone who is silent the opportunity of a new different self that is loud and intense.
Because you will accept that wanting something is normal even if you know you will be never able to get it.
Because you will realise that, unlike what society believes, disabled people have the same desires we all have.
Because you will understand that human beings can always find a means of surviving.


Favourite quotes:

“I’m a 165 cm woman born to tall, attractive parents with platinum credit cards. If I wasn’t disabled, the world would have been my oyster… whatever that means”.

“To live, my body breaks”.