Shaka Izawa has never left the group home she now resides in. Born with myotubular myopathy, she is dependent on her electric wheelchair and ventilator, the facility’s care workers, and a hard plastic brace that she wears to prevent her S-shaped spine from collapsing further. Her condition is not degenerative, a “beloved mantra . . . which [her parents] intoned in a manner that suggested it was something to be immensely grateful for.” Along with a sizable inheritance, they have left her ownership of the group home, as well as instructions to the staff that she be bathed only by female carers, so as to maintain her dignity.
Behind the group home’s walls, she is seemingly protected: a Buddha in Nirvana. However, Shaka is anything but quiet, content, and chaste.
Saou Ichikawa’s Hunchback, translated by Polly Barton, delivers a scathing criticism of ableism, challenging the mainstream assumption that disabled people are nonsexual. Our protagonist, Shaka, is forward, brash, and funny, speaking with “the self-deprecating humor of the afflicted.” She deems furikake an indispensable tool to surviving the bland meals at the group home. She rails against the able-bodied, “exclusionary machismo” of the literary establishment, takes jabs at “the ignorant arrogance of all those self-professed book-lovers.” On the Internet, she inhabits a different, anonymous self. She publishes erotic fiction under the account name “Buddha” on WordPress. Her Twitter is even more contentious, full of provocative tweets such as “My ultimate dream is to get pregnant and have an abortion, just like a normal woman” and “Now that my parents are gone, I might as well start investigating sexual services for women.” Then, unexpectedly, a male care worker at the group home, Tanaka, takes her up on it: her money, in exchange for sex. A chance, Shaka thinks, at “becoming a person.”
Even outside of the novel’s sex scenes and Shaka’s porn excerpts, Ichikawa writes with a deep sense of physicality. We trace through Shaka’s everyday movements: the arrangement of her limbs, her conversations by text, her act of breathing with a ventilator. We are compelled to slow down, to inhabit the disabled body, such as in this scene where Shaka prepares herself to use the bathroom:
“Deflating the trach cuff with a syringe, I detached the ventilator’s connector and turned it off before the alarm could sound. 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 . . . my way of walking was sufficiently imbalanced to make the word ‘limp’ seem an understatement, and whenever I lost focus, I’d strike my head on the left-hand side of the door frame.”
By grounding the book in disabled corporeality, Ichikawa is able to bring us to the edge of what constitutes pleasure—and then steps past it. For the able-bodied reader, the sharp dichotomy of the book’s opening plunges into uncomfortable territory. In it, Shaka stops in the middle of writing a porn scene to suction out the mucus that has built up in her windpipe. “Yeah,” she thinks, “that felt—good.”
Disabled people have always been remaking and creating new forms of pleasure, from the multiplicity of disabled intimacies in Alice Wong’s Disability Intimacy, to the practical know-how in Miriam Kaufman’s The Ultimate Guide to Sex and Disability. As Anna Mollow and Robert McRuer write in the introduction to Sex and Disability: “Disability . . . has the potential to transform sex, creating confusions about what and who is sexy and sexualizable, what counts as sex, what desire ‘is.’” Similar to how queerness has upended socially-normative sexual practices, disability expands sex into what the able-bodied may deem nonsexual, or even illicit and disturbing. From this perspective, Shaka’s celibate existence is already saturated with pleasure: sex is how turned on she gets from writing online porn; it is the fantasies she tweets into the open Internet; it is the joy of eating furikake on rice; it is the relief of breathing, mucus-free.
Shaka’s rebellion against her own desexualization ties into a larger pushback against her forced infantilization. She is not unaware of her financial privilege; in one scene, she reflects on the difference between her isolated existence and the lives of other disabled women:
“None of the issues [that affect women with disabilities] touched upon in the lecture had ever affected me . . . Bequeathed all this money by my parents, I had no need to allow my broken body to be ground down so as to enter society. Neither my heart, nor my skin, nor my mucus membranes had ever experienced friction with others.”
Later, she empathizes with Tomoko Yonezu, a young, disabled member of Japan’s Women’s Liberation movement, who spray-painted the Mona Lisa while it was on display at the Tokyo National Museum in 1974 to protest the museum’s inaccessibility. Shaka’s own immense dislike for museums can be seen, in part, as a reaction to her parents’ decision to distance her from societal friction—a museum’s intention, after all, is to preserve and protect, to encage fragile objects. But unlike the “flawless, polished . . . [and] impeccably preserved” artifacts in museums, the chronically disabled body continuously loses its societal value as it ages and degrades:
“The longer I lived, the more my body collapsed into an ever more aberrant shape. It wasn’t collapsing into death. Rather, it collapsed so as to live, collapsed as a testament to all the time I’d withstood . . . to live, my body breaks.”
But rather than being treated as fragile, Shaka wants to lean into this brokenness, to experience friction. In the hospital, after she nearly dies from giving Tanaka head, he asks her, “Was it worth risking your life for?” This, however, is the wrong question. Instead, we are left wondering, in a world where disability is deemed less than human, who has the power to determine what a disabled body is worth? Certainly not Shaka. Soon after, Tanaka quits his job at the group home and leaves behind the money she has paid him, her sex thus deemed not worthy enough to even accept payment for. She has been made back into the “hunchback monster” society sees her as: pitiful, subhuman.
In the ending scene, we are abruptly ejected from the group home. Now, a sex worker listens to a client describe how his brother murdered a disabled female resident and ran off with her money—characters that bear an eerie resemblance to Shaka and Tanaka. The memory of the dead woman, the client admits, still haunts him. Just as we begin to wonder if the entirety of the novel was some sort of false reality, we are met with these curious last lines: “I guess that, someday, I’ll conceive the child that Shaka wanted to kill so that she might become a person. Maybe that someday is—now.”
Who is “I”? Ichikawa leaves us hanging. Perhaps “I” is the sex worker, or the client, or Ichikawa herself entering the narrative. One thing is certain, though. Real or unreal, murdered or not, Shaka and her desires live on, haunting us, inhabiting us. A monster no more—simply, human.
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