Overview

Shaka Isawa is born with a congenital muscle disorder (Myotubular Myopathy) and a lot of wealth. Now in her forties, she’s spent all of her life in a care home just outside of Tokyo. She’s inherited this care home from her parents. She’s embroiled in a dynamic where her carers are also her employees. Days are spent doing a distance-learning degree, rage-baiting, and writing erotica for extra cash that she does not need.

Background

The author

The author, Saou Ichikawa, also has myotubular myopathy. She uses a wheelchair and relies on a ventilator; her life mimics her narrator’s. The book was written with minimal research, drawing mainly on personal experience, and the minute details of disability can be attributed to a life lived with it. It would be simplistic to call Hunchback autobiography. The shared experience matters, though. Ichikawa runs what I trust is an accurate simulation of her narrator’s life. The strength lies in the minute details, which frame the context of each event and remind us that the narrator’s physical reality is distinct from ours:

Even when I was away from the ventilator, I couldn’t be without a device to suction away mucus. As long as there was a plastic foreign object in the form of a tracheostomy tube stuck down my throat, my mucous membranes kept up a valiant attempt to fight it, and on account of their flawed blueprint, my respiratory muscles couldn’t even produce a cough with any real propulsive force.

Some more context

The narrator, Shaka has a lot of rage. Two pieces of history underpin this:

Post-war Japan ran on the Eugenic Protection Law, which permitted abortion and the sterilisation of the disabled. Neither required anyone’s consent but the physician’s.

Tomoko Yonezu was born in 1948. Childhood polio left her with one leg paralysed. She grew into the ūman ribu, the Japanese Women’s Liberation movement, at a time when its abortion debates circled eugenics. Yonezu stood at a fraught intersection and pushed both towards a rejection of the law.

The two sides came together in a sort of Hegelian synthesis to take as their mutual enemy a society which left abortion as many people's only viable option.

In 1974 the Mona Lisa went on tour and visited the Tokyo National Museum. To manage crowds, the museum barred less mobile visitors: the disabled, the elderly, mothers with infants. Yonezu took interest. On opening day she splattered the painting’s protective glass with red paint.

This event and its themes flitters in and out of Hunchback.

I hated museums, and libraries, and any kind of historic building. I loathed old things, whose flawless, polished form had been impecably preserved.

I first read the book without any of this in mind. It reads fine that way, as a portrait of one woman shitposting into the void. I think it reads better on the historical floor: the void has a shape, and her posts are aimed at it.

The book

The plot is pretty thin and can probably be summarised in a sentence. Before I describe it, I’ll point out that everything is framed by the mundane:

The S-shaped curvature of my spine, twisted so as to crush my right lung, afforded special significance to left and right. I could only get out of bed from the left-hand side. It was easier to get in from the right-hand side, but my head refused to turn in that direction so the TV had to be placed on the left

If we had some furikake to sprinkle on our rice then it’d feel like a meal

For a book that advertises itself on hedonism, it is the minute that endears.

Chronically online-ism

The book is a thought experiment: if someone only read about the world online, how would they imagine a ‘normal’ interaction?. Shaka earns money on the side pretending to be a male journalist writing about sexual encounters. Two things that stand out. They are written from a man’s perspective, and they are very weird.

Beyond the panes of glass that turned clear in an instant stood a whole cluster of garden gnomes doing their one-handed jig.

We might not always be conscious of it, but whenever we see printed text, we know there’s someone out there who’s written it. Be it the product descriptions in mail order catalogues, captions for photographs, or the copy in rental property or job vacancy catalogues , all that stuff is written by someone.

Writing from this position is fundamentally strange. The mental world Shaka enters stands in complete contrast to the physical mechanics of entering it. It isn’t true escapism, because the act of writing drags her back into her body. The placement of the book, the legs, the screen must be calculated precisely.

… people have likely never even imagined a hunchbacked monster struggling to read a physical book …

Selling articles introduces Shaka to search-engine optimisation. That does something to her psyche: her internal model of the world isn’t far from “this demographic would click on this listicle”. What does it mean to have aggregates of data be your working summary of human behaviour?

The other facet of Shaka’s online life is a rage-baiting Twitter account:

I want to get pregnant, then have an abortion.

I can’t imagine a foetus growing properly inside this crooked body of mine.

I guess I couldn’t withstand labour either.

And of course, taking care of a baby would be out of the question for me.

But I could get pregnant and have an abortion like anybody else. There’s no issue with my reproductive functions. So I’d like to experience what that’s like. My ultimate dream is to get pregnant and to have an abortion, just like a normal woman.

…

In another life, I’d like to work as a high-class prostitute.

What is the point of it? Not money; she owns the care home and the wealth behind it. To enrage, then? The book cites the ūman ribu and Yonezu as forebears of these obsessions, but theirs was a public movement and this is a pseudonym with few followers. I don’t think Shaka is grasping for change, or even for engagement. Which leaves the question of why she voices these thoughts in public at all. I won’t attempt a tentative answer.

The elephant and the short man (spoilers ahead)

Shaka’s carer, Tanaka, is short and poor. He bathes her and manages her ventilator; he holds her life in his hands for a wage. She owns the home, and therefore his livelihood. Between them runs a quiet oppression olympics. In internet terms he counts himself a lower class of citizen because of his height. In real terms he is broke and she is rich. Tanaka eventually reveals that he has read it all: the pornography and the tweets and the lot. The situation devolves, and Shaka offers him money in exchange for sex.

‘How about 155 million?’ I said, covering my throat. ‘Then, it’s proportionate with your height. One million yen for every centimeter. That’s the price I’m willing to pay for your able body’

The book is deeply uncomfortable and it is meant to be. The idea of a heavily disabled person paying her carer for sex will gross you out, and the book forces you to ask why. There is a power problem, but which way does it run? What if she’s forty? What if she owns the care home? What if he’s short and ugly? There are questions about consent and the ability to give it. The deeper question is why the situation is this uncomfortable at all.

It reminds me of that scene in Malcom in the Middle. A bully has been terrorising the playground swings for Malcom’s head, misses, and brushes against Stevie (who’s in a wheelchair). The playground tolerated the violence until that moment. Now the bully is cast out. The rule he broke is the one Hunchback questions; that the disabled are not allowed to be struck, or hurt, or desired.

The writing

Some of the writing is uncomfortably bad to read:

Like, girl, forget about him and move on with your life ...!?

The book is too short to hide jarring language. Certain words get repeated again and again within the same paragraph (see: “catalogues”). I assume something has been lost in translation. I am in the minority: most reviews praise the prose.

Overall

You can take away a lot from this book, but I don’t think it’s well-written. It’s a small time-investment, so I’m not mad about it.