It was around noon when she awoke after staying up late the night before. “I'm getting up!” she declares. She has no plans for the day, so she reads academic books and essays on minorities that interest her. Occasionally, she gets sidetracked by videos of rock band Mrs. Green Apple. “I'm hungry. Maybe I should cook,” she thinks to herself.
To many people, a normal day at home is taken for granted. “But for me, this small freedom comes with a huge sense of happiness,” she says.
Yui Yuda, 25, has spinal muscular atrophy, a disease in which muscle strength throughout the body gradually deteriorates. She uses her smartphone with her thumb and index finger which she can move by herself and she drives her electric wheelchair, but she needs help with most other body movements.
In 2016, she passed Kyoto University’s entrance exam under a special admission quota for six spots, because of her experience living with a disability.
After graduating from high school, Yuda moved out of her parents’ home in Kanda, Fukuoka Prefecture, to live by herself in a studio apartment at the university. She is now in her eighth year of "living alone with severe disabilities," and is studying sociology for her master’s degree at Kyoto University’s Graduate School of Education.
Although Yuda lives alone, there is someone with her 24 hours a day, 365 days a year. The city of Kyoto, to where she moved, has allowed her to use publicly funded visiting care services at all hours. About 10 female caregivers from Kyoto and Shiga prefectures — one during the day and one or two at night — visit her without interruption in order to support her daily life.
The caregivers essentially remain on standby. Like ninjas, they quietly wait in a spot near the entrance of the apartment, out of sight of the desk where Yuda usually sits. The distance between them is only about 3 meters. “It looks like they are not there, but they are,” she says.
Yuda has told her caregivers that they don’t need to ask her if they should do something ahead of time, so that she can do things spontaneously, which she wasn't able to do before. While on standby, the caregivers may be on the phone, reading a book or just sitting idle — they only come to help when asked.
When Yuda makes her daily “I'm up!” announcement, a caregiver steps up and removes the ventilator she wears while sleeping. The caregiver then helps her move to her electric wheelchair. On a day she plans to eat out with a friend, she stops by at a store and asks her caregiver to help her try on a cardigan she likes.
Because it's their job, Yuda says it's easier to ask caregivers for help instead of family members.
It's often the case that people with disabilities are made to wear clothes that are easy for caregivers to change, so Yuda was thrilled when she bought a pair of skinny jeans, which she thinks are one of the most difficult items to help someone put on. She named the day of purchase a year ago as “Buying Skinny Jeans Memorial Day.”
Yuda tries to do things by herself as much as possible. She can still manage to turn the pages of a book, so her caregiver simply places a reading stand on Yuda’s desk and returns to being on standby.
Yuda can also cook for herself, through what she calls “voice cooking,” by giving her caregivers step-by-step instructions on what to do. “Cut the tomatoes in half first, then cut them into six equal wedges," she says, for example. “Grill it a little more,” when a caregiver shows her meat or fish. “Please put in the soy sauce, ok, stop!” she says when trying to cook a sweet and salty dish her grandmother makes. Every time Yuda returns to her hometown, she asks her grandmother, 75, for recipes, but it's difficult to reproduce her dishes as she only says, “Just do it however you like.”
Words like a big wall
Yuda has lived her life in an environment where tiny freedoms have not been taken for granted.
Now, thanks to having caregivers around all the time, Yuda is able to do things like buy her lunch at a convenience store when she doesn’t want to cook. She can also go to the bathroom when she wants to, or roll over when she wakes up in the middle of the night. These things offer the freedoms that most people enjoy without even thinking.
Yuda says she is lucky to have been able to use care services like these for people with severe disabilities, the availability of which differs greatly by where a person lives. “I've seen many cases where municipalities refused to provide such services simply because there was no precedent.”
Yuda herself had a similar experience. When she asked the Fukuoka Prefectural Board of Education to provide her with a publicly funded caregiver at a local high school she was going to enroll in, the board refused her request, saying there was no such precedent.
“Their words were like a big wall that even a lever couldn't move,” she said. “Isn't it ridiculous that we’ve come to where we are today by doing so many 'unprecedented' things, and that a person's life and livelihood are at stake?"
A beautiful story
Yuda sent a letter to the town of Kanda where she was living at the time, and again went to the prefectural board of education. About six months after entering high school, the board hired a caregiver to help her during the daytime.
"I was finally able to go to the bathroom when I wanted to, and I thought, 'The world that I live in isn’t so bad.’ This episode was covered by the media when I, a disabled student, was accepted to Kyoto University from a local high school," she said.
But the the media reported it as a beautiful story about her struggle to overcome difficulties with the help from friends and her own hard work — not as a social issue about discrimination against people with disabilities.
“I had the feeling of being comfortably consumed by the majority in society,” Yuda said. “I would be happy if people would go beyond their emotional reaction, and think about the social structure that is creating discrimination and what they can do as members of society."
'Need a reason?'
People have often asked her, without hesitation, as to why she wanted to go to a regular high school instead of a school for those with special needs, or why she goes through the trouble of trying to live by herself. Some people have even brashly asked her, “Can’t you live in an institution?”
“People without disabilities are not asked those questions. In a society designed for the majority, many people can make choices for no particular reason, but people with disabilities are expected to have 'a noble reason’ in making their choices,” Yuda said.
She also felt uncomfortable with some public voices condemning motives cited by a death row inmate in a 2016 mass murder at a facility for people with mental disabilities.
Satoshi Uematsu, a former care worker at Tsukui Yamayuri En facility in Sagamihara, Kanagawa Prefecture, murdered and injured 45 residents and staff, and cited negative thoughts about people with disabilities as one of his motives.
Some words of condemnation, however, included a notion that “even people with disabilities deserve to live,” Yuda said.
“I thought, ‘do we need to prove our value to be living?’ I’m receiving publicly funded services, but I feel that there is a sense of value in the society that ‘it's a waste of taxpayers' money to help 'unproductive people,’” she said.
“I want to live the same way as able-bodied people, and I’m just asking for an environment to make that possible. Regardless of whether you have a disability or not, it’s tough when it is not affirmed that you are trying to ‘just live,'” she said.
Experts point out that in order to change the persisting discrimination in society, people in the majority camp need to change the way they think.
“In a way, if you live in this world, it’s natural that people discriminate (against minorities) because a sense of value for the majority is installed in people’s minds,” Yuda said. “I am in a minority in terms of having a severe physical disability, but in other areas I am in the majority as well.”
Yuda says people might be afraid of being told that their words and actions can be a form of discrimination, but just like when one steps on someone else's foot by mistake, people can correct themselves by saying, "Oh, I'm sorry.”
“You can learn little by little by listening to the views of the person you stepped on. I hope people will not be afraid to do this,” she said.
This section features topics and issues from the Kyushu region covered by the Nishinippon Shimbun, the largest daily newspaper in Kyushu. The original article was published May 30.
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