Japanese film challenges assumptions about life for severely disabled people
TOKYO (Kyodo) – A Japanese documentary film that follows a couple who lovingly care for their severely disabled daughter who was declared “close” to brain death at birth poses important questions to the public about how they understand life and the meaning of existence.
The parents of Honoka Nishimura, now 14, were told by doctors that she would never be conscious when she was born in 2007. But, although she would need 24-hour medical care 24, the couple took her home to the city of Saitama, north of Tokyo, when she was 9 months old.
The 72-minute film titled “Honoka” shows her from the age of 3 and her parents for three years. Like all parents, they shower her with affection, take her for walks and read picture books in her presence, while her mother, Risa, 45, also takes care of her medical care.
Under a 2010 law authorizing organ transplants upon recognition of brain death in children under 15, a diagnosis of brain death is made if a series of criteria are met: an individual is in a coma so deep that he feels no pain; their brainstem reflexes have disappeared, such as not coughing when the throat is stimulated; their brain waves are flat; and they are unable to breathe on their own.
But Honoka was never officially diagnosed as brain dead, having been born before the law came into effect.
Director Yugo Kunitomo said he started thinking about the issue of brain death before he started filming the family, at a time when debate was raging in Japan over the revised law.
“Although brain death is often associated with death, the body of a brain dead person is warm and their nails and hair grow. I was wondering if such a state could really be defined as being dead,” Kunitomo, 38, said in an interview.
What also motivated him were the images of his mother, now deceased, who taught in a school for disabled children. One of his students seemed to be in a similar state to Honoka.
“When I saw the pictures, I was shocked that he was actually living in such a state, but my mother treated him with affection,” Kunitomo said, adding that he even wondered for a moment if there was an interest in the child. to be alive.
“When such a thought occurred to me, however, I felt disgusted with myself,” he said. “I wanted to know what my mother thought about disability and life.”
In the film, Honoka’s father, Hidekatsu, 45, confesses his bewilderment upon learning of his daughter’s condition. Risa told the director that she wanted to confirm to herself through the lens of the camera that what she does every day really matters.
Risa’s hands appear rough due to the daily medical care she provides to Honoka with the help of assistants, including inspecting her respirator, feeding her through a tube, massaging her to help her urinate, clearing phlegm and changing position frequently to prevent pressure sores.
But much of the film is filled with the family’s joy of raising their daughter, complete with a trip to a zoo and birthday celebrations. Parents often talk to her and ask her what clothes she wants to wear.
The film features Risa as “communicating” with Honoka, interpreting non-verbal messages from the expressions and sounds her daughter makes through the respirator. One scene shows Honoka wearing plush cat ears fitted with sensors that are supposed to move when they detect brain waves. In the scene, the ears move.
“I felt Honoka’s temperature, her life and her power to be alive,” Kunitomo said. “In creating this film, I discovered the great existence of life, seeing that Honoka is certainly alive at such a special time and age.”
After finishing filming the family in 2014, it took the production team seven years to put together the film, which omits narration and quietly captures the family’s daily life. The director’s goal was to try and allow the audience to connect with the family through him and his experiences of being around Honoka.
Before the film was released in January this year, Risa was worried about how the public would perceive the family. They had faced criticism before, such as accusations that the parents were “keeping Honoka alive just to satisfy their egos,” for example, Kunitomo said.
Her anxiety only increased after a 2016 mass murder at a mentally disabled nursing home in Kanagawa prefecture, south of Tokyo, and the way she believed Japanese society “seemed to distance itself from the incident,” according to Kunitomo.
But after seeing some of the positive reactions from members of the public via social media and other news sources, Risa told Kunitomo that her family felt more accepted, which helped her restore trust in society. .
The film distributor plans to release the film online after screenings at theaters in other regions of Japan, including Niigata and Saitama prefectures.
A teacher visits Honoka, now a junior high student at a special school, at home three days a week. Activities include the showing of his video sequences.
According to Kunitomo, Honoka appears to be showing a reaction to the footage regarding environmental issues. When such images are displayed, the alarm on his saturation monitor, a device used to measure oxygen saturation in the blood, often sounds.
She is also connected online with other students and goes on field trips with her parents. Her physical condition stabilized as she grew, although she fell ill every year, he said.
His parents say they now lead spiritually fulfilled lives after establishing new relationships with people connected to Honoka’s school, allowing them to have associations in society that were largely limited to parents and those who support the family.
“This movie asks a question,” Kunitomo said. “There may be people who are shocked watching it. But at the same time, kids like Honoka actually live in the same world.”
Kunitomo says he is not looking for answers by asking the question of how to see and treat these children, but thinks it is essential for the public to ask questions about the lives of people with severe disabilities.
“I want audiences to cherish the emotional turmoil of seeing this film,” he said.