“Hunchback,” a novel by Japanese author Saou Ichikawa, is rapidly gaining international recognition, earning nominations for several major Western literary awards despite being the writer’s first published book. Ichikawa, who relies on a ventilator and electric wheelchair due to an incurable congenital muscle disorder, has drawn praise from critics who describe the novel’s global rise as an “unprecedented achievement.”
A private library of more than 1,000 medical memoirs recently opened to the public in Osaka. The library is called “Tobyoki no Mori” (the forest of patients’ stories). It includes books by entertainers about their battles with cancer, memoirs of everyday people with intractable diseases such as Parkinson’s and books by people living with disabilities.
軽い。足はまだ麻痺している。手は動く。携帯電話発見。ラジオあり。
Light. Legs still paralyzed. Hands can move. Mobile phone located. Radio on.
“I hated paper books. I hated the machismo of the traditional reading culture, which requires five physical abilities–the ability to see, the ability to hold a book, the ability to turn pages, the ability to maintain a reading posture and the ability to freely go to bookstores to buy books. I hated the ignorant arrogance of book lovers who are not aware of their privilege of being able to read paper books.”
Sao Ichikawa, the winner of the Akutagawa Prize, is a 43-year-old resident of Kanagawa Prefecture.
She was diagnosed with congenital myopathy, a muscle disease, one of the most intractable diseases, when she was 10 years old, began using a ventilator at the age of 14, uses an electric wheelchair for transportation, and writes using a tablet device.
“I wrote this with the mind that there are not many authors (with severe disabilities) like me,” Ichikawa, who uses a ventilator and electric wheelchair, said in a press conference.
The protagonist of the story is a woman with the same serious disability as Ichikawa.
She describes her life in which she is forced to rely on medical equipment such as a ventilator and aspirator to aspirate her lungs, while at the same time humorously expressing her bitter sarcasm toward the lives of normal people.
The work is full of Ichikawa’s powerful words as a person with severe disabilities.
Barrier Free Japan