The Book That Made Me Sit With Discomfort

Hunchback follows Shaka and her daily life with myotubular myopathy, which is a severe congenital muscle disorder. She has an extreme spinal curvature that causes pressure on her internal organs.  Despite all of that, Shaka participates in online classes, donates to local charities, and has a job writing erotic fiction. However, one of the attendants in the group home where she lives discovers Shaka’s secret Twitter account where she writes her depraved fantasies and trolls people online. Will the attendant’s knowledge of her online activities come back to haunt her?

My feelings on the book are complex. I like that the novel dealt with Shaka’s day-to-day living. She needs a trach and ventilator to breathe. She is dependent on others for survival. She is isolated in the group home because of her mobility issues. She has difficulty holding books and had to use a suction catheter to get mucus out of her chest multiple times a day. 

In those aspects of the book, I felt seen. I understand her loathing the process of getting the mucus out of her chest. I have experienced that numerous times since getting the trach and ventilator last year. Just shifting slightly could cause mucus to fill up my chest. For a while, I couldn’t lie down without being overcome with mucus and suffocating. It would sometimes take several suction attempts to get the mucus out. Even though the process takes less than several minutes, it is always uncomfortable and hard to breathe during the process. I feel tired afterwards, but appreciate that the mucus is gone. 

Shaka’s loneliness from isolation struck a chord. For the most part, I am stuck at home because my family doesn’t have a disability van or a ramp to get down the stairs. If I need to go out for a doctor’s appointment or emergencies, it has to be by ambulance. My only way of communicating with people is on social websites, which is fine for the most part. However, I do miss the act of going out and exploring places with others. Right now, I just want to be able to go to the movie theater so I can talk in real time with people about the films I like instead of waiting months to see them on streaming platforms.

After reading reviews on the book, I saw that a lot of reviewers had trouble with the book after they found out what Shaka trolls about: paying for someone to give her sperm so that she can get pregnant and have an abortion. I had to sit with her statement on that for a minute. I am pro-choice, but find her thoughts on the topic horrible. However, after reading the book fully, I have several thoughts about her statement. 

In the book, it talks about how Japan’s government treats disabled people as if they are invisible. Having a disability is seen as a disadvantage. While the government has made laws regarding disability issues, they are not enforced and don’t change the minds of the general public about people with disabilities. In the book, Shaka realizes that even some of the attendants in her group home look down on her because of her limitations. Shaka doesn’t think as highly of herself either since she refers to her body as monstrous due to the severe curvature of her spine. With her body preventing her from doing a lot, she is resentful of the fact that abled-body people can do things like having a baby or an abortion. I also think posting extreme content is a way for her to get attention, even if it is negative. She doesn’t have a lot of people to talk to in real life, and her only place of any type of social interaction is on the web. 

It doesn’t condone everything that Shaka says, but I do understand her a little bit. I look around at former classmates who are married with children, and I feel ashamed to admit that I am envious. It is not that I necessarily wanted kids or marriage. I just hate that having a disability has limited or extinguished the possibility of having those things in my life. It is different when you make a choice about not doing something versus when it is taken from you against your will. 

I think that the combination of Shaka’s disability, writing erotica, trolling people, and giving money to charity gives her a lot of layers, which I think is the overall point of this book. Shaka is not just her disability, her writing, or her charities. They all work together to make the person she is: a person who has her own thoughts and embraces her sexual desires.

I think the multi-layers of Shaka’s personality are the result of the author’s own struggles with disability. Saou Ichikawa also has a severe muscle disability, and used her experience and history of disability in her country to create the complexities observed in Shaka’s personality. I think that combination makes the book a good read despite its triggering content. It reminds us that beyond mucus being clogged and a weakened physical state, people with disability have the same passions and desires as everyone else, and shouldn’t be denied due to society’s standards.