Wheelchair Women Are Changing The Dialogue Around Disability In Japan
Having Others Understand Your Difficulties Makes Them Less Difficult
Aiming to create an inclusive society, these women are telling all about how they are getting on with life in a wheelchair—from toilet troubles to sex.
Have you ever wondered how people confined to a wheelchair go to the toilet? Or how they have sex? In other words—have you ever wondered how people confined to a wheelchair get on with a ‘normal’ life?
Recently in Japan, a handful of wheelchair-bound women have taken to social media and mainstream media, to explain the challenges of life in a wheelchair. They are doing it to change the narrative around disability to one that includes them as part of everyday life.
View this post on Instagram
In an interview with the Asahi Shimbun’s ‘withnews’ in February last year, Eri Umetsu explained why she is letting the world know about her private life:
until now, generally what has been sought was a moving tale of overcoming disability, but I thought, you know, there’s more to it than that…there’s love, marriage, childbirth, child-raising—life continues
Sex is part of life
Consequently, she says, sex is part of that conversation. “I think there are many disabled people who are troubled by the same issues, so I want people to know that even disabled people can have sex, can fall in love, and can have children.”
At age 27, two years after getting married, Umetsu developed lupus and was bed-ridden for six years as the autoimmune disease attacked her whole body. With rehabilitation, she gradually became able to eat by herself, go to the toilet by herself and perform other daily activities.
View this post on Instagram
She had hoped for children, so when she found herself on all fours during a rehabilitation workout, she asked the therapist if that was a posture she could use for sex. “The occupational therapist was a young woman, so I was able to talk about that kind of thing frankly.” But most people, she said, would probably have difficulty asking about sex.
“In the end, the most basic style was the best,” added Umetsu, who is in her early 40s.
Umetsu is part of a group of wheelchair-bound women called “Beyond Girls,” which came together a few years ago to spread a message of inclusivity. She is a core member, along with Ayako Ozawa and Ryoko Nakajima. They have a group YouTube page where you can see them performing songs, and they participate in various events—sometimes as models, sometimes as speakers—to raise awareness of wheelchair users’ needs.
Nakajima told withnews that before she met Umetsu, she had no other disabled friends that she could confide in. Since suddenly becoming paraplegic at the age of nine, and feeling no sensation in the lower half of her body, Nakajima has had problems with urine leakage. Confiding in her ‘healthy’ friends didn’t give her the answers she needed and instead made her wonder if there was something wrong with her.
But Umetsu understood and reassured her that it was just something that wheelchairers face—weak sphincter muscles caused by their disabilities.
Part of the reason she also discusses sex openly, said Nakajima, who is in her early 30s, is because she thinks it will help others who are struggling with the issue. With no feeling below her waist, she can’t feel sex, but enjoys the intimacy of it, she told withnews.
part of the reason she also discusses sex openly, said Nakajima, who is in her early 30s, is because she thinks it will help others who are struggling with the issue
There are many issues that non-wheelchairers have no idea about. Nakajima explained to NHK TV’s B面談義 (B-side lecture) about her difficulty with defecation disorder.
“Not even one millimeter will come out if I don’t use a laxative,” she told the show. “I don’t know when it will come out, because I don’t feel any sensation, so I spend the whole day on the toilet.”
When she worked for a company the boss gave her Wednesdays and Sundays off to use those days for that. When her co-workers asked how she had spent her day off, she told them she had spent it sleeping. She says she felt a wall build up between them because she was unable, to tell the truth.
— 中嶋涼子/Ryoko Nakajima😋 (@NakashimaMinion) June 17, 2020
“Recently, on the internet, on SNS, I talked about having defecation disorder. I said that I call it unko (poo) day and that I abbreviate that to UD. I got 200 likes for that. Someone replied ‘me too.’ My friends say, ‘Ryoko, tomorrow is your UD, right?… It’s made it easy to talk about it.”
But the focus of her activities is bigger than herself. “If (the term) UD spreads nationwide, then women working now who are in wheelchairs may be able to get UD to leave. It is my dream to spread ‘UD.’”
Breaking down barriers
Mako Shibuya, who lives in Yamagata Prefecture, started her YouTube page by also talking about defecation disorder and having to use a catheter to extract urine. Since falling off the roof of a house two years ago while apprenticing under her father—a thatched roof maker—the 28-year-old has been confined to a wheelchair due to a spinal cord injury.
Although she can extract her poo and doesn’t have to spend an entire day on the toilet, she can’t feel the internal accumulation of excretion. “Even more than being able to walk, I wish the excretion sensation would return somewhat—that’s how difficult it is,” she says in her YouTube video.
Shibuya started posting to YouTube last year, after being unable to find any information online about women in wheelchairs, or women with spinal cord injuries.
In April, she told the Asahi Shimbun that she wants to share information with others who are struggling with the same issues but are unable to ask about them. “I hope I can give disabled people who live in the countryside ideas about ways to do things,” she said.
She also wants regular people to know about undiscussed issues—like defecation disorder—that she and other wheelchair users face, because understanding, and being understood, helps break down barriers between us.
As she explains in the YouTube video about the reason for making it, “Leaking pee in front of someone who understands and leaking in front of someone who doesn’t, is completely different.”