"Ponkotsu-san" is a precious existence of national treasure class. [Interview with Nami Kishida | Part 2]
"HERALBONY & PEOPLE" is a series where we talk to people who support HERALBONY. In this series, we interview people from all genres who are regularly in tune with HERALBONY's activities and business. We ask these people, who stand out in various fields such as art, business, design, welfare, and culture, "What does HERALBONY mean to you?"
The second guest is Kishida Nami, author of "I Didn't Love Her Because She Was Family, She Was Family Because I Loved Her" (Shogakukan), which describes her daily life with her younger brother who has Down Syndrome and her mother who is wheelchair-bound.
In the first part, we spoke about the theme of "World Down Syndrome Day," and it emerged that they had gained absolute trust in Matsuda, the representative of Heralbony, who is able to interact with people on an equal footing, regardless of whether they have a disability or not.
In the second part, we asked them to talk about the creativity required by welfare facility staff, as well as some life tips that people with disabilities and those around them can teach us .
People who are violent are not "troublesome" but "people in trouble."
--In the first part, you said that World Down Syndrome Day and World Autism Awareness Day are also days for families, facility staff, and helpers.
Nami Kishida (hereinafter, Kishida): As I mentioned in the first half, autism cannot be lumped together. For example, if autistic people have severe behavioral disorders, they may hurt themselves a lot. They may scratch themselves, become violent, or not be able to stop themselves from doing such things. When something interrupts their routine, severe behavioral disorders occur.
Actually, my younger brother has a close friend who is autistic and has severe behavioral disorders, and since we have the opportunity to go out together, I decided to take a course on how to care for people with severe behavioral disorders.
During the four-day course, there was a time when my hair was grabbed, but the instructor taught me something that really made sense to me. People with severe behavioral disorders are not "troublesome people" but "people who are in trouble." They are not acting violently because they want to, but because they are unable to express well how painful, painful, distressed, or sad they feel, and so they are simply "acting out" as a way to communicate that.
So, instead of trying to deal with the problem by "preventing them from getting violent" or "preventing them from hurting themselves or others," it's important to find out what is bothering them. For example, if they can see something unpleasant across the room, you could draw the curtains so they can't see. If they can't calm down without touching water, you could turn on the tap and have them touch the water, and then show them a picture of when you'll be turning it off.
If you continue to respond in this way, in about a year, the severe behavioral disorder will gradually improve. When I learned that in the course, I was impressed and thought, "Helpers are an incredibly creative job!" It's a job that really requires incredible imagination. They are extraordinary creators who need a variety of skills, including the power to continue trial and error with tenacity, judgment, and decision-making.
If we have the skills to deal with autistic people, we can solve any problem.
--If the work of helpers around the world could be more clearly understood and recognized as a creative job, we might be able to encounter a world that is a little different from what we've seen before.
Kishida: What's amazing about people with autism is that they have such keen senses that they can see things that are completely different from the rest of us. For example, there are people who can focus on a speck of dust floating in the air in a room. They can barely see the person's face, and only focus on the dust. They say they feel very comfortable, surrounded by sparkly things, as if they were inside a snow globe. If someone talks to them at such a time, the beautiful world of the snow globe pops like a soap bubble, and they panic.
It's incredibly difficult to imagine what it's like because it senses something incredibly delicate that we cannot sense. But when I catch a glimpse of that world, even for just a moment, it's incredibly endearing.
I think the ability to deal with autistic people can be said to be the same for bosses who bully people at work, or people who have some kind of interpersonal trouble in the world. There is something deep inside a person who behaves problematically. The ability to recognize and deal with it is basically the same whether you are facing a person with autism or a boss who bullies people.
--It seems that there is a huge gradient in how other people see the world, with the autistic world being the furthest away and the abusive boss being relatively close.
Kishida: Yes. People often say, "Imagine yourself from someone else's point of view," but that's impossible. You can't imagine it because you don't even know that such a position or world exists in the first place. First, you need to know that there is a world that you can't even imagine. Then, think about what to do and try it. If everyone repeats this, society may change little by little.
So rather than shouting, "On Autism Day, let's be understanding of people with autism," I always think that people should learn how creative the work of supporting these people can be, and that with those skills, most interpersonal problems in the world can potentially be solved.
If people only say "thank you," their vitality will wither away
Kishida: When it comes to knowing that there are worlds that we cannot imagine, I feel there is also the issue of "thank you."
For example, when working with a person in a wheelchair, you often hear stories like, "Employees became kinder to each other," or, "They started opening the door for us every time." But when I hear that, I get a little worried. Because every time someone opens the door for them, the person in the wheelchair has to say, "Thank you." I think that must be hard for them. I think they're happy at first. They might be touched and think, "How kind." But it's tough if that continues forever.
"Thank you" is like a balloon filled with air or a bank balance. If you keep saying "thank you," you need to keep receiving "thank you" in the same amount. If you don't, you will gradually lose vitality. The more you say "thank you," the more you will feel that "I can't do anything by myself," and you will gradually become servile.
To avoid this, you can either say "thank you" less or receive "thank you" more.
Previously, there was a story about an artist who was able to file a tax return for the first time in his life thanks to Heralbony. When someone pays their taxes, it's truly a "thank you." The people on the street say "thank you," and the country says "thank you." And when they start earning money, their families say "thank you," too.
Creating opportunities and mechanisms for people who normally say "thank you" a lot to be able to say "thank you" to themselves is something that needs to be done, and I think it's amazing that Heralbony is actually doing it.
However, you can't really know this until you work together.
But if you understand the principle, you can apply it to other problems. For example, if mothers who always finish work early because of the reduced hours keep saying "thank you," it must be hard on them. Why are mothers sometimes in a bad mood at home? You will come to understand all of these things.
I believe that by working with people with disabilities, you will naturally come to understand these principles and gain the skills to face most challenges that may come your way in life.
Thoughts on seeing my younger brother get into trouble after earning money
Kishida: We've talked about a lot of things up to this point, but once again, I feel that Heralbony has great resolve. That's because the stance of judging something purely on its work can be seen as destructive behavior.
In the peaceful world of welfare facilities, where people lived in a sort of protected "village," they brought the possibility that "art can make you a star." In other words, they created a system that would produce "people who are chosen" and "people who are not chosen." And the only criterion was whether it was a good work of art. It's incredibly fair, but I think it will take a lot of determination and conflict to continue to maintain that in the future.
Creating paths that people with disabilities can aspire to, paths that were previously closed to them. HERALBONY's approach is truly consistent.
My younger brother also got a job from a company and was paid a fairly large amount of money for drawing an illustration. As a result, he started looking at Amazon a lot, and he bought a lot of hamburgers and ate them without permission, and he failed a health check. When I see that, I can't help but think that he would have been happier if he had never known about the existence of money. I think that it would have been better if he had never known how to earn money.
However, in the past, they were not even able to face this conflict because they did not have any choice. Parents, siblings, and other family members think, "We don't want our loved ones to have hard times. We want them to live happily and peacefully," but the troubles that come with earning money and the obstacles that come up when you leave your protected world are necessary for the individual's growth.
In the past, by not giving him money, we took away his choice to "get hurt," but in reality, even getting hurt was his right. Now, through being scolded and failing, my brother is gradually coming to understand the value of money.
A world where "Ponkotsu-san" are everywhere must be a happy place.
--When you work with people with disabilities, each of these things becomes a learning experience for you. It's hard to put into words the benefits of having people with disabilities in the workplace, but I think there are actually a lot of them. What do you think about that, Mr. Kishida?
Kishida: Without fear of being misunderstood, I think it's good for every workplace to have a "useless person." In other words, someone who doesn't do anything. If the atmosphere is always "Let's all work hard and improve our skills!" and "Let's grow!", everyone gets tired. My younger brother is a "useless person." He lives in a world that has nothing to do with money, and he lives his life with the feeling that it's fine as long as he's having fun. As a human being, as an animal, he's living the most correct way (laughs).
When I see my younger brother like that, I feel like I can forgive myself and live happily, thinking things like, "Even my brother is trying his best to live, so I should try my best too," or, "My younger brother is taking it easy, so maybe I should take a break too."
So I think it would be good to have more "useless people" in the world. Regarding the employment of people with disabilities, I would like to see more people who make you wonder, "What on earth can this person do?", rather than just charismatic people who work hard.
In the Sagamihara facility for disabled people massacre that took place in 2016 , the perpetrator said, "There is no point in life for people with severe disabilities." In response to this, arguments tend to arise such as, "The human rights of disabled people are important," or "Anyone can become disabled," but I don't think that's the case.
Even bedridden people who can't do anything themselves are helpful to others. Some helpers who take care of bedridden people who can't even talk choose this job because they're not good at talking to people. By taking care of bedridden people, such helpers may feel self-esteem fulfilled, thinking, "Even someone like me can be helpful to others."
In that sense, the "useless guy" who seems unable to do anything is an important existence on the level of a national treasure. By simply existing, he is helping someone.
A society where people with disabilities don't have to work as hard as able-bodied people, or even harder, but rather "just be there." I think this is a way of being that can be considered simply from the standpoint of efficiency, not a matter of human rights.
--A world with "Ponkots-san" who makes those around him happy just by being there --I feel like that's what a world where 8 billion unique people can play an active role is like. Thank you for the wonderful story over the two parts.
Interview/photography cooperation: KOKUYO Co., Ltd. Tokyo Shinagawa Office " THE CAMPUS "
Edited by: Yuko Umino (Heralbony)
Text: Maru Pro Photo: Yudai Omokawa
An item with the same art as the blouse worn by Kishida
Necktie "(Untitled) (Blue)" | Silk scarf "(Untitled) (Blue)"
