An Undaunted Writer Who Broke an Invisible Barrier in Japan

New York Times

15-05-2025

When Saou Ichikawa was named the winner of the Akutagawa Prize in July 2023, one of Japan's oldest and most prestigious literary awards, she flashed a thumbs-up to her parents and editor before going onstage to receive it in front of a gold screen.
While the 45-year-old novelist was the 181st winner of the prize, she was the first to require a ramp to ascend the stage. Ms. Ichikawa has congenital myopathy, a muscle disorder that requires her to use a wheelchair for mobility and a ventilator to breath, and was the first author with a severe physical disability to win.
She used her moment in the national spotlight to highlight how people with disabilities face isolation and are invisible in society, a theme she took up in her prizewinning novel, 'Hunchback.'
'I wrote this novel thinking that it is a problem that there were few authors with disabilities,' she told reporters, pressing a button on her larynx to speak. 'Why did the first winner not appear until 2023? I want everyone to think about that.'
It was a long journey for Ms. Ichikawa, who was removed from school after being put on the ventilator at age 13. But she refused to disappear, becoming an author in her 20s in an effort to reclaim a voice in society. For two decades, she wrote more than 30 pulp romance and fantasy stories meant for young readers. But all of her manuscripts were rejected.
In 2019, when she enrolled in an online degree program at Waseda University, one of Japan's top schools, she began thinking about how people with disabilities are rarely represented in literature. She resolved to change that by telling the story of a character like herself, reliant on a wheelchair and a ventilator because of a major disability.
'Hunchback,' her first work in which she said she took up a serious topic, bared a part of her experience for readers to see.
'There were only very stereotyped representations of the disabled, and I wanted to break that,' Ms. Ichikawa said in an interview at the home of her parents, with whom she lives. 'I wanted to show that we are people, too, with a diverse range of personalities and desires.'
These include sexual desires, which her main character, a woman named Shaka who has a similar muscle disorder, uses to assert control over her own life and to seek revenge on a society that tries to deny her humanity.
'Through Japan's history, disabilities and illnesses were seen as something shameful to be kept hidden,' Ms. Ichikawa said. 'When pregnant women passed by people with severe disabilities, they were told to show a mirror to ward off evil spirits.'
She stuck with writing, despite many setbacks, because she had no other way to be heard. Still, Ms. Ichikawa, who writes on an iPad, never imagined that her first work of 'pure literature' would win a top prize.
'When I heard, my mind froze,' she said. 'I think I was accepted because of my novelty, but I hope I can open the way for others to write more freely.'
Ms. Ichikawa's breakthrough comes as Japan is becoming more aware of what is called ableism, the assumption that society belongs to the able-bodied. In 2019, two people with severe disabilities won election to Japan's Parliament, where renovations were required to accommodate their wheelchairs.
'Her winning the Akutagawa Prize has made a lot of people suddenly see the invisible barriers,' said Yuki Arai, a professor of literature at Nishogakusha University. ''Hunchback' is a shout of anger at a society that doesn't realize it's denying them participation.'
The most frequently cited passage of Ms. Ichikawa's book is a rant by the main character, who wants to read but cannot grasp a book in her hands. In a burst of angry self-loathing, Shaka blames an 'ableist machismo' that blinds most people to the barriers shutting out those with disabilities.
'Able-bodied Japanese people have likely never even imagined a hunchback monster struggling to read a physical book,' Shaka says.
Although she born with her illness, Ms. Ichikawa was healthy as a young child, enjoying dance and gymnastics in elementary school. Knowing that her condition could worsen, her parents took her on trips to Thailand and Canada.
After Ms. Ichikawa started requiring a wheelchair and ventilator, her parents built a home by the coast so she could still see the ocean. She said this was nevertheless a dark time when she was plagued by nightmares, including one in which her floor was littered with the carcasses of dead bugs.
Later, she read in a book on dreams that this reflected a fear of being left behind.
Despite multiple book rejections, Ms. Ichikawa didn't give up, saying she had 'nothing else to do.' 'Hunchback' has exceeded her dreams, with an English translation recently released.
Now that she has ascended to a bigger stage, Ms. Ichikawa has no intention of leaving it.
'I plan to go on a rapid-fire spree of writing spontaneous novels for the next few years,' she said. 'I want to break preconceptions and prejudices.'