It’s 8 p.m. and the sun has set. Orange light leaks from an old black wooden house.
Since April, four men and women with serious mental and physical disabilities have been living together in the shared house called Hatake no Ie (A House of Fields) in the city of Fukuoka — where caregivers watch over them.
The “big sister” is Hikari Mizuno, 27. She grinned and her eyes widened as she heard lively voices coming from the hall, though she is bedridden and can’t talk.
People who have both severe physical and mental disabilities have difficulties, for instance, getting up and turning over on their own, as well as having trouble communicating with others. Many of them need constant medical care, such as being on a ventilator, having their mucus suctioned or receiving nutrition injections through a gastric fistula, and live at home with full assistance from their families.
What does it take for them to live on their own? This article delves into a case in which parents have worked to provide an independent life for their adult child so she is prepared for life after her parents die.
The voice came from Yusei Fukagawa, 24, who uses a wheelchair and is the only one of the four at Hatake no Ie who can communicate verbally. He lives with his roommates — Takahiro Kuramitsu, 25, and Narumi Ando, 24 — who, like Mizuno, require medical care and were classmates at a special needs school.
“Isn’t it time to go to your room, Yusei?” Hikari’s father, Hidetaka, 53, asks quietly.
The house was originally the home of the Mizunos. Hidetaka and his wife, Mutsumi, 53, have been taking over nighttime duties since they are still short on staff.
Fukagawa was dozing off as Hidetaka pushed his wheelchair to his room. Hidetaka dropped by each resident’s room on the way and said: “Apologies if Yusei caused some trouble today. Good night.”
During the daytime, each of the four spends time at a day care facility.
In the mornings and evenings, they are constantly watched over by visiting nurses, helpers and caregivers who prepare meals and do laundry.
Hidetaka’s goal is for them “to live a life where they can take the initiative in their lives and have their voiceless voices be heard.”
In 2011, Hidetaka established Chiisana Tane (Small Seed) in his neighborhood, which provides temporary care for people with severe disabilities.
This was because there were few places that would accept children like Hikari, who need medical care at home. There were even fewer places for them to go to after they graduated from school.
He was also unhappy with the fact that people with severe disabilities go to care facilities after their parents die.
“Isn’t there a choice for people with disabilities such that they can picture a future full of dreams?” Hidetaka said.
With that in mind, Hikari and her parents drove around the country to support centers for people with disabilities in cities such as Yokohama, Sendai and Nishinomiya, Hyogo Prefecture, while she was in elementary school.
They were encouraged to see many people with severe mental and physical disabilities living on their own.
Since then, the goal has been to have Hikari live on her own in their hometown someday.
Fortunately, in the past 10 years, the number of home nursing stations and helper agencies providing medical care has increased. That means it is possible for Hikari to live at home as long as she has enough caregivers to look after her.
In 2019, the couple moved to a nearby apartment in order to create the shared house, with Hikari as the head of the household.
Kuramitsu also wanted to move in, and the two began living together in the fall of 2019. This spring, Ando and Fukagawa joined, and the house has been renovated to provide private rooms for four people and barrier-free facilities.
During daily activities such as selecting clothes or hair ornaments, giving haircuts, and shaving, Hikari’s parents and other caregivers sense the mood of each resident by watching for changes in their facial expressions.
One evening during snack time, a helper showed the residents two different flavored jellies — apple and grape.
“Which would you prefer, apple or grape flavor?” the helper asked.
Ando opened her mouth toward the grape-flavored one with an “ah” sound. When a spoonful was brought to her mouth, she flapped her hands in delight.
Just after 3 a.m., Fukagawa regularly wakes up and announces that he needs to go to the toilet.
Sleeping beside his bed, Hidetaka rubs his eyes and carries him to a portable toilet.
“I feel as if I am being driven by their overwhelming power to live,” Hidetaka says.
Unlike at care facilities, there’s no distinction between those who provide assistance and those who are assisted, nor is there a hierarchical relationship between the two.
More than three months have passed since the four started living together. So far, there haven’t been any sudden changes in their physical conditions, and they seem to be showing their individuality day after day.
“Even us parents may be too protective of our child to be fully attuned to their thoughts and wishes,” Hidetaka says.
The more severely disabled people are, the fewer opportunities they have to make their own choices, which can lead to a mentality of “giving up.”
Hidetaka is keenly aware of the importance of an environment that allows disabled people to have various experiences.
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 July 8.
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