made me uncomfortable in good ways, 4/5

this book was rather thought-provoking for me, and at some points i was left a bit uncomfortable because i felt somehow that i was intruding on very personal thoughts. while the book is not firsthand relatable, i can only begin to understand this desire for experiences that are (or feel greatly) impossible to achieve. i can begin to understand the isolation, the loneliness, the feeling of being a burden, etc. but certainly not to this degree. i have privileges that allow me to walk away from those experiences, or to hide from them, or to work on them and build myself anew with ease. a part of me wishes i could understand, so i could truly empathize with this book.

in this book, shaka is a woman that was born with a congenital muscle disorder, which is already dictating a lot of what sort of life lay before her in our ableist societies. i am someone that was not born with physical defects (i’m pretty sure), and if i have a disability then it’s not diagnosed/not enough to debilitate me much in my daily life. reading this book gave me a new lens to perceive much of what i’ve seen as “normal” or “regular” for a person to want, realizing further my ignorance in how plausible those things would be for people of different able-ness. so, i have been left wondering and secondhand-yearning for a better life for shaka after reading this.

it does not sugar coat anything, in my opinion. the frustration and craving for what has been ingrained in shaka as “normal” is raw. in fact, i wonder if the author still held back in some of these sections. i do not know. i will say that i read the english translation, so perhaps the language is more precise in ways my language cannot handle. i wonder at the differences the original would be to what i read, and it’s really such a shame that even if i became fluent in japanese today, i probably still wouldn’t be able to pick up on all the nuances in the book as though it was my mother tongue.

this book stays on my mind, similar to how “acts of service” does. i wonder at it, pick at it, try to understand it… but it’s all just out of my grasp. i reach nonetheless