Caption: Stills from the movie "The Eighth Day". The film tells the heartwarming story of a Down syndrome patient, George (left, Pascal Duquenne), exuding the brilliance of humanity
Humans, animals, sometimes try their best to save a small life, but in the same era, the same people are still making exterminating nuclear weapons that can reduce a large number of lives to ashes in an instant, and use these weapons to threaten each other.
In my opinion, the people who commit these two actions are not two people who are essentially different. It's not that the person who wants to keep the child is God, but the other kind of person is the devil, and their essence is the same in the final analysis, which is what makes me feel the most terrible.
Today, we are in such a chaotic era, but I think that even if human beings see an unsaved disabled child, they must do their best to keep him alive and raise him to adulthood, as long as this behavior continues, it means that we still have a glimmer of life. Humanity is still saved, that's my opinion.
- Shigeo Saito, "The Day To Shine for Life"
World Down Syndrome Day is celebrated on 21 March each year, and the 21st is chosen because of the uniqueness of Down syndrome – the 21st pair of chromosomes has one more. And it is precisely because there is one more chromosome than ordinary people, Tang And their families have endured more difficulties and ups and downs than ordinary people.
Stills from the movie "The Eighth Day"
There is a child, she was diagnosed with internal organ damage when she was just born, the hope of survival is minimal, if you are her parents, or doctors, nurses, or outsiders who have nothing to do with her, will you choose to save her or let her die?
Around the question of the life and death of this Tang child, Japanese society has launched a fierce discussion, launched a question of the meaning of life, and reflected on the continuous pursuit of evolution by human beings...
It's a life-saving race against death.
But was the child finally saved?
Today we recommend the new book "For the Shining Day of Life" series of "Japanese Phases", the author Shigeo Saito through a series of tracking reports, recorded the birth of this Tang child caused by the "should not let her live" national discussion, revealing the deep spiritual legacy brought about by the problem of Tang's life and death.
I have one more chromosome than the average person
But don't want to be superfluous
Statement | Shigeo Shibuto
Source | Excerpt from "The Day To Shine for Life"
Translation | Chen Xingzhu
01
An era of mass abuse and small lives
A society in which disabled children can be raised together can be called a livable society not only for the elderly, but also for ordinary people. In this sense, as Dr. A once said, children with disabilities may seem at first glance like a "burden" to society, but they play a valuable role in transforming society. At the same time, Dr. A also mentioned:
"You can't just say to the parents of children with disabilities, 'Life is important, so bring them up,' but also tell them that this responsibility will be shared by the whole society." Only by providing such support can we encourage parents to take action. If everyone is the attitude of 'you should raise him, but then no one cares', eventually our society will become more and more unsuitable for human survival. ”
Stills from the Japanese drama "ObstetricIan Bird"
Recently, amniotic fluid tests during pregnancy can detect abnormalities such as Down syndrome in babies, and medical technology to control the birth of children with disabilities is constantly advancing. Dr. A explains the technology to us while telling his own story.
"My wife and I both married late, and she was thirty-five years old when she gave birth to her first child. It is easy for an elderly woman to give birth to a Down child, and we could have done an amniotic fluid test, but in the end we did not do it. We feel that even if the child is born with a disability, we must take good care of him. If the whole society thinks that disabled children are useless, then ordinary children who have not achieved much will also be considered useless. I don't want to live in a world like this. ”
It's not that A's profession is a doctor, he says this, and we can see from Dr. A's account that he is also a person in life who faces his true inner thoughts.
Listening to Dr. A's story, I didn't realize that the sky had darkened, and there was silence near the office. From time to time he fell into contemplation, followed by a long silence. At this time, Dr. A suddenly said:
"Man, an animal, sometimes tries his best to save a small life, but in the same era, the same man is still making exterminating nuclear weapons that can reduce a large number of lives to ashes in an instant, and using these weapons to threaten each other. In my opinion, the people who commit these two actions are not two people who are essentially different. It's not that the person who wants to keep the child is God, but the other kind of person is the devil, and their essence is the same in the final analysis, which is what makes me feel the most terrible.
Today, we are in such a chaotic era, but I think that even if human beings see an unsaved disabled child, they must do their best to keep him alive and raise him to adulthood, as long as this behavior continues, it means that we still have a glimmer of life. Humanity is still saved, that's my opinion. ”
A few days after visiting Dr. A, we met a university professor whose major was economics.
"It is enough to want to know whether a society is good or bad, and to see how disabled people in this society are treated."
That's what the professor said. His views coincide with those of Dr. A.
"If people with disabilities and the elderly are not seen as obstacles in this society, they are not only protected, but they can also maximize their potential and participate in all kinds of social affairs – if a society can guarantee this state, it is a quality society." Japan is not yet too poor to build a humane society. ”
In fact, the professor is also the father of a disabled child. I would like him to combine his own personal experience and talk about his views on the life and death of Tang's children.
The professor said:
"If we think about the situation of parents who are struggling to escape from harsh conditions and who are living with children with disabilities, especially the situation of mothers in these families, we cannot easily draw conclusions about this question. However, precisely because my own children are handicapped, if I have any insight, it is probably that human potential is unlimited. ”
In other words, one of the key words when thinking about life and death is "possibility."
"Including those with severe disabilities, all children have an amazing potential to do something good. The quality of children is not how they compare to others, but how far we can realize each child's potential. ”
Tapping into potential – this is not only an important principle for raising children with disabilities, but also a starting point for all children to be human. In this sense, it is precisely because of disabilities that some of the things that have been lost in our society are re-lit.
Around the tang's question, we listed a lot of facts and exchanged ideas. Finally, we had an exchange with Mr. X (a multi-person pronoun) think tank in the "Nippon Phases" series.
02
Children are not personal belongings of parents
The author of the short story "Jizo Who Listens to People and Jizo Who Doesn't Listen to People" was Koji Uno , a writer who published many novels during the Taisho and Showa periods , including "The Man Who Borrowed Children" (died in 1961). When we searched for books in the library, we found this story in the children's book "The Red Room", published in 1923. The general plot of the story is as follows -
A long time ago, an old monk suddenly appeared in a village, placed a Jizo Bodhisattva on the east and west sides of the village, and said to the villagers, "The east jizo will fulfill any of your wishes, but the west jizo rarely hears your wishes." Therefore, it is better to go to the west of Jizo..."
As soon as the words stopped, the monk disappeared. Just like the old monk said, if you make a wish to the east of Jizo, "Please cure my illness", "Please let me become rich", etc., he will fulfill everyone's wishes one by one, so people will go to the east of The Jizo.
Twenty or fifty years have passed, and the villagers have become rich, and they still want to "make sure that I be the richest person in this village", so there are more and more rich people in the village. Later, there were even people who made a wish to make someone sick, to blind someone, to make someone lose their legs... The villagers are slowly getting poorer and poorer, and there are more and more sick people in the village. Eventually, the village was completely deserted.
At this time, the old monk appeared again, and he said, "Just go to the west to pay homage to the 'Jizo who doesn't listen to people.'" With that, he disappeared. The jizo in the west could not fulfill everyone's wishes, so the villagers no longer had any purpose, but simply visited the shrine. The villagers slowly became less greedy and began to work hard, and eventually the village returned to a scene of living and working in peace and contentment...
Mr X said:
"I remember reading this work when I was a child and was very impressed. Today's world seems to have a 'Jizo who listens to people', and with the flick of a button, his desires can be satisfied... If we don't visit Jizo, who doesn't listen to people, then I'm afraid we will end up in a miserable situation. ”
What kind of enlightenment does this story bring to us in modern society?
"In the past years of low productivity and material scarcity, people in various countries tended to abandon those who did not contribute directly to production, but in this affluent era, the tragedy of 'killing' the disabled is still playing out, which is fully proof that money and material things are not used to support and enrich the human spirit." Material abundance makes our lives richer, but it accelerates spiritual poverty. Because the institutions and systems that support children with disabilities and their parents are not perfect, once a disabled child is born, parents feel isolated by society, which leads to tragedies such as child murder and parent-child suicide. ”
Mr X stressed that parents still have a deep-seated belief that "children are their private property".
"In Japan, the idea that children have a personality independent of their parents and that they have the right to develop their own personality and live their own lives has not yet been widely accepted. This is also why some parents think that their children can be disposed of entirely by their own ideas. They did not consider from the position that 'children are children of society, and they should ask for benefits from society in order to survive for their children', but chose to dispose of them according to their own methods. ”
In this series of letters from readers, some people believe that no one but their parents has a say in the life and death of Tang's children, and if parents want their children to die, they should let them do so. This view left a deep impression on Mr. X.
"I understand the harsh reality faced by Tang's parents, but this does not mean that raising Tang's children is a matter for each family, and while alleviating the pain of Tang's parents being forced to bear the pain alone, we must firmly believe that human life belongs to him and implement this view to the end." If this is not done, eventually people will also feel that the elderly with Alzheimer's disease should die, and our society will become a cold and ruthless aging society. ”
03
Live in mutual encouragement
A Tang mother told us that when she was sending her child to kindergarten, one of the children said to her, "Auntie, why did you send him to our kindergarten?" He's only going to cause us trouble! Hearing this, she was shocked.
The mother said: "I think the parents of that child must have said something similar to him at home, and it is a terrible thing that such a young child has such a strong prejudice." There are even parents who lack common sense to tell their children: "Don't hold hands with Tang's children, this disease will be contagious." "Many children with disabilities and their parents are constantly suffering from prejudice and contempt from their surroundings, and those cold eyes are constantly shooting at them like cold arrows, making them suffer.
Based on this social reality, Mr. X continued to preach:
With the development of medicine, the lives of the weak will be saved, and the number of disabled children will continue to increase. Our society will inevitably become a society in which healthy children and children with disabilities live together. But what is the reality? From infancy, healthy children are put on the path to becoming winners in life, growing up unaware of the existence of disabled children.
In this way, the so-called healthy people will have the feeling that "those people are different from us, they are flawed, special people" feeling. They did not have the idea of living with people with disabilities, but from the beginning they thought that people with disabilities could only cause trouble.
However, children with disabilities are not a special group. Just as some people are strong and some are weak, there are thousands of different individuals among healthy children, and disabled children are just one of many differences. In other words, they are also "ordinary children."
If we all think that "children should be normal" and measure others by the standard image of a healthy child, then children who do not conform to this image will be considered inferior, and everyone will be afraid to become like him. Over time, these children will present a negative image, and people will slowly turn away from them.
However, what if healthy children have more opportunities to spend time with children with disabilities from infancy? They will understand that there are always people in the world who cannot easily originate or climb trees; they will not be surprised that those children have different faces and missing limbs. Naturally, everyone will support the disabled children together and live with them.
Having said that, Mr. X continues to focus on the parents of children with disabilities who have appeared in this series.
He said:
"The growth process of a disabled child is unimaginable to ordinary people, parents must be very difficult, mothers must have cried many times, parents in the serious upbringing of children at the same time, but also get the encouragement and love of children." Having fun in the growth of children, the family can live together in harmony. ”
Mr. X believes that the whole society should be more supportive of this way of life.
"Those families should cherish the relationship between people, cherish the feeling of 'alive', and constantly continue and expand this awareness, so that it becomes part of the whole society." In this way, no matter how weak an individual is, he can also experience the feeling of being valued, and people encourage each other to get through this difficult time together. Shouldn't we create such a humane world? ”
Last night, before finishing the series, we went to the hospital where Tang's child was.
It had been a hundred days since she had received the intravenous injection, and her tiny body was burning with the flame of life, trying her best to survive. But according to the doctor's diagnosis, her hopes of survival remained slim.
It was cold outside. In the pitch-black night sky, I saw a flickering lamp in a pediatric ward. Little life will soon disappear into the night sky. We continue to think about what Down wants to convey to us with her short life, and we keep exploring this question until the deepest part of it—
About the Author
Shigeo Saito (1928-1999) was a famous Japanese journalist. Born in Tokyo, he graduated from the Faculty of Economics at Keio University. In 1952, he joined Kyodo News Agency and served as a reporter, deputy director and editorial board member of the Ministry of Social Affairs, retiring in 1988. In 1958, he won the First Japan Press Conference Award. In 1974, he won another award for the series "Ah, Prosperity". In 1983, he received the Japan Press Club Award for his long-standing journalistic activities and high reputation as a journalist. In 1984, the "Happiness in Japan" series won the Japan Press Association Award. In 1993, Iwanami Shoten published his 12-volume collection of works.
Saito became famous in 1958 for reporting on the "Suga Incident". He cared for the vulnerable all his life and dared to expose the dark side of society. Saito believes that "the reality of the society in which we live cannot be accurately captured by so-called calm and objective observation alone." Journalists must cross the border into the situation of the weak, and only by thoroughly observing the world from the standpoint and perspective of the weak can we get close to the essence of the situation. We must consciously realize the fictionality of common sense such as 'neutrality, impartiality, and objectivity'."
Some people once used "career reporter" to describe Saito Shigeo, thinking that he is the most in line with the image of journalists in Japan, even in his later years, in the face of doctors who hesitated to tell the truth about cancer, Saito said that "journalists need to know the real situation", let doctors tell the truth, like news interviews, use a book to record their condition one by one, how much work they can do, and what options are available for measures to delay their illness. This was 5 days before he fell unconscious. As an industry role model, he is still admired and remembered by many young journalists.
Works by Shigeo Saito · All four volumes
A masterpiece of the non-fiction series that influenced Japan's post-war generation
"Hungry Poor People", "Wives' Autumn Period"
"The Burning Evening Scene", "The Day to Shine for Life"
Especially recommended