What's most important is not the rights of people with disabilities, but an open mind. [Interview with Nami Kishida | Part 1]

"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 episode features Nami Kishida, author of "I Didn't Love Them Because They Were My Family, I Loved Them Because They Were My Family (Shogakukan)," which tells the story of her days with her younger brother who has Down's syndrome and her mother who uses a wheelchair. This will be a two-part series.

Kishida-san and Heralbony

Mr. Kishida and HERALBONY have a deep and inseparable bond. Mr. Kishida first wrote about HERALBONY on Note in July 2020.

The following year, HERALBONY produced the blouse that Kishida-san wears as her uniform when appearing in the media, and it was also made into a product for the general public. The work used on the blouse is "(Untitled) (Blue)" by artist Midori Kudo. This art is also the key visual for the currently open "HERALBONY BUDDY WEEK" special website.

This time, Kishida-san answered the interview questions wearing the blue art blouse that is part of her uniform. In commemoration of "World Down Syndrome Day" on March 21 and "World Autism Awareness Day" on April 2, we asked her various questions surrounding "disabilities" in the current year of 2024, such as, "How should we make the most of these awareness days in the future?"

Why I Haven’t Been Involved Much in the Disability Community

-Starting in 2022, HERALBONY has designated the period between World Down Syndrome Day on March 21st and World Autism Awareness Day on April 2nd as "HERALBONY BUDDY WEEK," and has continued to hold various events and projects to meet and connect with people who are unique.

Mr. Kishida, what are your thoughts on the World Down Syndrome Day and World Autism Awareness Day established by the United Nations?

Nami Kishida (hereafter, Kishida): To be honest, I hadn't really thought about it. But after I took out a newspaper ad on World Down Syndrome Day two years ago, I started to feel like "the person who does something on Down Syndrome Day" (laughs). Since then, I've been doing some new initiative every year.

In December 2020, I wrote an article on Note about how I gave my mother in a wheelchair a Volvo car that she could drive using only her hands, without using her feet. I received a lot of support from people all over the country. I received a lot of tips from people who said, "I have to do something!"

But I already bought the car (laughs). My savings were almost gone, but I felt that it would be "not right" to add to my savings with the money I received, so I decided to use the money to take out a newspaper ad on World Down Syndrome Day. My younger brother has Down Syndrome, and as a child he had a hard time riding the bullet train or bus, so my father took him to Disneyland in his Volvo. I included a photo of my family and the Volvo from that time, along with that memory.

To tell the truth, I didn't even know that there was such a thing as "Down Syndrome Day" until then. I knew that there was a "Disability Week" and I think that various gatherings and events were held during that period. But I didn't go to many of them.

When my younger brother was little, my mother often attended meetings for parents of children with Down's syndrome. At that time, the community was very small, unlike today, and even within that community, there was a lot of competition between mothers. For example, some mothers would feel relieved that their child was able to speak compared to their child.

What I felt strongly at that time was that it is not true that all people with disabilities get along. There are superiority and inferiority rankings among people with disabilities, and there are good people and bad people. Because I knew this reality, I did not participate in many gatherings for people with disabilities.
Filming cooperation: KOKUYO Co., Ltd. Tokyo Shinagawa Office "THE CAMPUS"

World Down Syndrome Day is a day to look to the future

--So you're saying that you can't just categorize people as "disabled." When you interact with each person, they're completely different.

Kishida: That's right, exactly.

Then, two years ago, with the occasion of World Down Syndrome Day, our relationship with the Japan Down Syndrome Association deepened and we began working together on various initiatives.

When my book, "I Didn't Love Them Because They Were Family, They Were Family Because I Loved Them" (Shogakukan) was made into a TV drama, the actor Yoshida Aoi, who has Down Syndrome, was chosen to play my younger brother, and I was once again very grateful for the help I received from the Japan Down Syndrome Association.

This is because actors with Down's syndrome have had almost no opportunities to audition up until now. In Japan, people with intellectual disabilities have never appeared on screen or on television to begin with. Overseas, an actor with Down's syndrome named Zack Gottsagen has served as a presenter at the Academy Awards, and the hiring of people with intellectual disabilities has been progressing for a long time.

So the Japan Down Syndrome Association used their network to gather candidates and hold auditions. The children who made it to the final selection appeared as friends who live with my younger brother in a group home. That was really great.

When I experienced this, I realized that it was only because there is a community for Down Syndrome and various initiatives such as awareness days have been continued that so many people have gathered and an actor with Down Syndrome has made his TV debut. Aoi-kun has even traveled to New York as a representative of Japan with Down Syndrome and given a speech at the United Nations.

When my younger brother was a child, there really was no information, so I think everyone in the family was anxious. They had no idea how he would live alone in the future. That's why I think his parents tried to feel at ease by focusing on small differences, saying things like, "My child is more mature than that child."

But now, with Aoi-kun making his TV debut and the finalists going on to perform in a play about Down Syndrome called "Chocolate Donuts," we can see a bright future. I think World Down Syndrome Day is about focusing on such a future.

The more we know, the more blurred the contours of "disability" become

Kishida: But even so, to me, my brother is always just my "little brother". I've never thought of him as a "child with Down's syndrome". I myself get asked about Down's syndrome by a lot of different people on a regular basis. Or I get complimented on my brother with Down's syndrome by saying, "Children with Down's syndrome are so cute. They don't lie and they're like angels!" But to be honest, when people ask me for advice, I say, "I don't know anything about that!" And even though my brother has Down's syndrome, he lies (laughs). I just can't generalize it as "Down's syndrome".

I can't say anything about something I haven't seen. To me, he's just my younger brother, Aoi. Aoi can dance, he can memorize the script, he's been growing up and becoming able to talk more and more through his roles, and he's got a lot of stamina, and even if he doesn't sleep much, he can get up at 3am and go to the location. I was surprised that there were kids like that, so I guess you can't just lump them all together as "Down's syndrome."

Also, among the actors, there are some who cry in frustration because "that kid has appeared in more shows than me." I was so surprised when I heard that, and thought "I didn't know there was that kind of competitive spirit!!!"

The more I learn about the growth and unexpectedness of each individual, the more I find it difficult to say things like, "Children with Down Syndrome are like this," or "Children with Autism are like this." The more I learn, the more the outlines of "Down Syndrome" and "Autism" seem to blur.

Not about "rights for people with disabilities" or anything like that, but just being honest

Kishida: Because of this transition, I was really shocked when I met the Matsuda brothers, the founders of Heralbony. They never say things like, "Art by people with disabilities is wonderful." The works themselves are just so amazing, and they are merely the "entrance point." I was really struck by how amazing that was.

The Matsuda brothers have always been very level-headed towards people with disabilities. When I talk to people outside of my family, I don't want them to dislike me. That's been the case since I was in elementary school. It's the same with people with intellectual disabilities. For example, when I can't hear what they're saying, I hesitate, wondering if it's okay to ask them again. I also wonder if it's okay to talk to them in simple words, like talking to a child, or if I can't hear what they're saying, is it okay to ask the parent next to me? I get really nervous and anxious, wondering if I'm doing the right thing, or if I'm hurting them.

On the other hand, the Matsuda brothers don't have any qualms with artists and just treat them normally. Their distance is just right; it's neither that of friends, strangers, nor business partners.

For example, when I published a book ( Mou Akanwa Nikki (Rightssha) ), I had the opportunity to use a work by a Heralbony artist as the cover illustration. There was an animal drawn on it, and when I asked, "Is this a cat or a dog?", the Matsuda Brothers answered, "It's a dog." But the next time I met them, they said, "It's a cat." According to the artist, this is a work that changes into a dog or a cat depending on the day. I thought it was amazing that the Matsuda Brothers accepted it completely neutrally, without trying to be funny or anything. Normally you'd want to point out something, but they didn't. They just accepted it as it was, saying, "That's interesting." It's not easy to do that.

In other words, they don't praise the unusual artists in a weird way, nor do they praise them from above as if they were children, but rather they see them from the same perspective and enjoy them in the same way. Seeing this, I could tell that Matsuda and his team don't care if the person has a disability, but just look at the person's work and personality, and I thought, "There's no doubt about what these people do."

They're not concerned with the rights of people with disabilities, or that society needs to change, or anything like that, but rather they simply move in the direction that they feel is "cool." I feel that this stance is consistent throughout the Matsuda Brothers and the entire HERALBONY.

What can you do to make Awareness Day a better day?

--I've been thinking about how we can get more people around the world interested in "World Down Syndrome Day" and "World Autism Awareness Day."

Kishida: I think the important thing is to keep going. If you keep going, year after year, little by little, more and more people will learn that "there are people like this out there."

I think that in particular with autism, there are many cases where families have a difficult time dealing with it. So I think that World Down Syndrome Day and World Autism Awareness Day should also be days for families, facility staff, and helpers.

In the second part, Kishida shares his unique perspective on the creativity required of welfare facility staff, and the life tips that people with disabilities and those around them can teach us.

Click here for the second part >> The "useless guy" who can't do anything is a national treasure. [Interview with Nami Kishida | Part 2]

Interview/photography cooperation: KOKUYO Co., Ltd. Tokyo Shinagawa Office " THE CAMPUS "
Edited by: Yuko Umino (Heralbony)
Text: Maru Pro Photo: Yudai Omokawa