知らないなんて、もったいない！

The world of performing arts for people with intellectual disabilities
Tomoko Utsumi (Chairperson, NPO Dream Energy Project)

■ Don't let COVID-19 get you down! Online concert to be held.
The "Wonderful Encounter Concert" was scheduled to be held on March 21, 2020, which is "World Down Syndrome Day."
The concert was originally planned to feature a collaborative performance of piano, vocal, and harp music by people with Down syndrome, as well as theatrical and musical performances by people with intellectual disabilities. However, it was postponed to May due to the spread of the coronavirus. When that also became impossible, there was a suggestion to postpone it to "fall or later," but it was decided to hold it as an online concert.
For someone like me who's not tech-savvy, this was quite a daring challenge.

At the NPO Dream Energy Project (commonly known as DoriPro), which I head, we create learning and experiential spaces for people with intellectual disabilities and support "work experience" programs. One of our main activities has been organizing theatrical performances and concerts by people with intellectual disabilities, but this was our first time doing an online concert. We had absolutely no idea what to do or how to do it.
I considered using paid music streaming services, but they require IDs and passwords, and I felt that customers like me who aren't tech-savvy would give up halfway through! So I decided against it.
I considered "publishing" it on YouTube, but there was something that bothered me.
That fear is the possibility of becoming a target of slander and defamation online.
It would be a shame if an anonymous and irresponsible comment were to stifle their desire to express themselves, given how hard they've been working on it. Because of this concern, we decided to offer a limited, free streaming service throughout October, sending the viewing URL only to those who requested to watch.

Program for the "Wonderful Encounter Online Concert"
Part 1: Piano performance and solo singing by a person with Down syndrome, and a guest harp performance.
Part 2: Messages from the 11 members with intellectual disabilities to those who watched the online concert.

The venue was a French restaurant in Fujisawa City that also served as a salon concert hall. Originally, a concert with tea and cake was planned, but unfortunately, it was held without an audience.

In the second half of the concert, each member of Dream Project shared their special talents and messages. For members who couldn't attend the venue due to concerns about COVID-19 infection, they sent in recordings of themselves dancing or reciting poetry from home, which were then edited together.

Comments from viewers (excerpt):
●I was impressed by everyone's dignified demeanor during their presentations. I could sense a clear intention to share and communicate their message. This feeling was conveyed through their clear and articulate speech. I realized the importance of having the desire to communicate.
●Each performer's individuality shone through, and I thoroughly enjoyed it. The harp was also wonderful. I believe that expressing oneself and having a place to do so are very important. Although it is difficult to hold events and recitals these days, I respect everyone's efforts in devising ways to hold this event.

This concert is currently available to watch on the Dream Project website .

■Performing arts for people with intellectual disabilities

Stage arts such as theater, music, and dance are also called "performing arts." When it comes to performing arts by people with disabilities, many people were moved by the dancer with a prosthetic leg who appeared at the closing ceremony of the Rio Paralympics.
However, I think that performing arts by people with intellectual disabilities are still not very well known.

Art, such as paintings and sculptures, created by people with intellectual disabilities is known for its unique charm and brilliance.

Many of you are probably familiar with Shoko Kanazawa, a calligrapher with Down syndrome who wrote the opening title calligraphy for the historical drama "Taira no Kiyomori."

In fact, there are several organizations, including DoriPro, that employ people with intellectual disabilities to engage in theater, music, and dance.
There are some groups that have been featured in the media and have won awards overseas, and it might be presumptuous of me to say this, but if I were to say it with the hope that more and more people will learn about their unique performances,

It's a shame not to know about it!

We would like to introduce some aspects of our activities at DoriPro, as well as information on performing arts organizations in Kanagawa Prefecture and overseas.

■Doripro's Theater and Concerts

Since 2012, DoriPro has been holding "Inclusion Live" events in Tokyo live music venues, featuring professional musicians and people with intellectual disabilities. In 2016, 2017, and 2019, they held a musical and theatrical performance called "The 21st Wonderful Encounter," and in 2018, they held a music event called "Wonderful Encounter Concert" at the Yotsuya Community Hall.

This photo is a scene from the play "The 21st Wonderful Encounter," which was held at the Kanagawa Prefectural Mutual Aid Mirai Hall in August 2019 as part of Kanagawa Prefecture's "Coexistence and Co-creation Project." Most of the performers are young people with intellectual disabilities such as Down syndrome and autism.

People with Down syndrome may have soft voices or slurred speech, making them difficult to understand.
In 2015, when I first started writing scripts because I wanted to do theater, I thought it might be difficult for them to actually deliver their lines, so in the planning stages I envisioned a "narration play" where they would convey their lines through gestures, body language, and facial expressions accompanied by narration. However, as they practiced more and more, they became eager to speak their lines and started talking, completely forgetting about the narration. At first, some children couldn't even look up, but now they were facing forward, and the lines of children who were mumbling and difficult to understand became clear. Before I knew it, each and every one of them was on stage, energetically delivering their lines and acting.

They have an intellectual handicap.
The degree of difficulty varies from person to person, ranging from a lack of comprehension to difficulty concentrating or inability to control one's emotions.

All sorts of things can happen, both in practice and in the actual performance.
It's common for players to "freeze up" during practice (a state of being unresponsive, neither moving nor speaking), or to become lost in their own world.
She would barricade herself in the bathroom and refuse to come out, change her lines on her own and add a more comfortable melody, and before rehearsals started, she would lose control of her emotions and hide under a desk in the venue office.
On the morning of the performance, I got separated from my mother and lost my way in the city, and then during the performance, I had to rush to the toilet and was late for my turn...

There are all sorts of things that happen, but what matters is that when it comes to things you love, you can unleash an incredible amount of energy.
I'm unconditionally honest about things that bring me joy.
I love expressing myself, and because expressing myself is fun, I can keep going.

Intellectual disabilities are often perceived as something that "cannot do many things" or "doesn't make sense," but sometimes their little remarks, gestures, or actions can make you laugh, or conversely, make you think, "Wow!"
There aren't many differences between us, and it makes me wonder, "What exactly is a disability?"

Actress Takako Tokiwa has shown her concern for these individuals and has been participating as a volunteer.

Many people fill out the questionnaires at the end of each performance very thoroughly.
Excerpts from a survey conducted during the 2019 performance.
●I was deeply moved by how hard everyone was working on something they loved. I often stop myself from doing things because I'm too worried about what other people think, so I was impressed by how much they were genuinely enjoying themselves while acting.
●It was a play filled with the joy of being born. I'm sure you've experienced many hardships and difficulties in the past and will continue to experience many in the future, but I hope you will continue to have kind hearts that care for, cherish, and love others. I also gained many insights from it.
●The content makes you think about the meaning of being born. And it's wonderful to see the individual personalities of each cast member shine through while they all act with such conviction.

Regarding concerts, the online concert I mentioned at the beginning is the second one, but the first "Wonderful Encounter Concert" held in 2018 was mainly a concert featuring performances by performers with Down syndrome and performers with autism.
It was fascinating to see how the differences in disabilities each created a unique musical style.
The performers with Down syndrome had a gentle and warm nature, which came through in their music. On top of that, they approached their performance with the challenges that each of them faced due to their disability.
Toshiki has a pacemaker implanted in his heart, Hayato is deaf in his left ear, and Rintaro was born with a missing right wrist, so he plays melodies using the five fingers on his left hand and the six fingers on his right wrist.

Piano performance by Rintaro Suzuki

On the other hand, the performers with autism all said that they were hyperactive and restless as children, had strong fixations, and had difficulty learning the rules of daily life.
However, thanks to her mother's observation that "she was only quiet when listening to music" and the creation of an environment that fostered this, her talent blossomed. Her ability to concentrate on the music she loves is exceptional, and her performances and singing are full of passion and possess a dynamic energy.
For example, consider the piano performances. While the piano playing of Mayu and Rintaro, who have Down syndrome, was gentle and full of emotion, Takuto, who has autism, had a lively rhythm that made it seem as if his fingers were joyfully dancing on the keys, creating a dynamic and deeply resonant sense of depth in his playing.

Piano performance by Takuto Koyanagi

Solo performance by Tae Kamiya

The concert received a great deal of positive feedback.
Loud, unending applause, people in tears, and numerous survey responses saying they were "moved."
However, due to their intellectual disability, their rhythm and tempo may be less stable than others.
Hayato, for example, can hardly be described as "good." He consistently sings off-key.
So, what did the audience applaud for?
Someone told me, "Perhaps it resonates more directly with people's hearts because you're not trying to make it look good."
Indeed, since it's difficult for everyone to express themselves through words, they pour their true selves into songs and music.

It might take an immeasurable amount of time to master a single song, or you might struggle to achieve perfect accuracy, but your passion will overcome all of that.
She has a genuine honesty that allows her to fully express her true, unadorned self, without any pretense or manipulation.
There is an overflowing earnestness about them.
That's what moves the hearts of those who listen, isn't it?
Strength within weakness...
We often say "turning a negative into a positive," but the effort we've put in while facing various difficulties, and the path we've walked without giving up, all shine through in our performances, whether it's playing music, singing, or anything else. Wouldn't the same be true for theater and dance?
I think that's one of the appeals of performing arts by people with intellectual disabilities.

Singer Keiko Mizukoshi, who came to see the show, wrote the following on her blog:
"The piano performance, violin, trumpet, flute, and solo singing—each performance and song reached deep into my heart, and I was moved to tears at times. (omitted) Everyone made each song their own, and each person, as an expressive artist, poured it out to us with their rawest hearts. (omitted) As a mother, as a musician, and as a person, I felt many things, and I also felt the importance of fundamental principles in everything, and it was a precious time for me."

■ Organizations involved in performing arts with ties to Kanagawa Prefecture

[Love Junks]

Love Junks is an entertainment school for people with Down syndrome.
The school has branches in the Kanto, Kansai, and Hokkaido regions, with a total of 800 members.

"I feel that people with Down syndrome are exceptionally good at expressing what they feel directly," says Anna Makino, the founder of Love Jump School. In 2002, she was asked by the Japan Down Syndrome Association to teach dance to children with Down syndrome, and was so captivated by their ability to attract people and their high level of sensitivity that she founded Love Jump School.

Twenty-six years ago, when my child was born, it was rare to see people with Down syndrome on television. Love Junks' activities, including numerous appearances on television and at events across the country, have not only been an encouragement to parents raising children with Down syndrome, but have also become a significant force in revealing the vibrant, hidden power of children with Down syndrome to those unfamiliar with the condition. Anna, who instructs and choreographs for professional dancers, speaks powerfully about the charm of dance performed by children with Down syndrome.
"The way they wholeheartedly enjoy dancing touches people's hearts and reminds us of our roots."

[Hot Generation]

Hot Generation, transcending the boundaries of disability, stages original musical productions three times a year alongside professional musical actors.
The group's founder, Meiko Torii, says of the members with intellectual disabilities, "Their performances, woven from pure and innocent souls, are overflowing with kindness and beauty, providing unparalleled healing and courage."

Tae Kamiya (front row of the stage), who has autism and has played the lead role in many of the productions, has a singing voice that sounds as if it has descended from heaven.
Torii, who has been coaching Tae since she was in high school, says:
"There are times when I can't approach practice with a stable emotional state, but it's important to always believe in the potential of my opponent."
It is precisely because of the unseen struggles that Tae shines so brightly on stage, displaying a dignified presence that belies her disability.

I have a connection with Hot Generation, and about 20 years ago, I asked Ms. Torii to set up a branch in Kanagawa, so we established the Kanagawa school. Together with other families of children with disabilities, we worked to create a place where children could smile.
I graduated seven years ago to establish DoriPro, but I believe that activities promoting inclusion itself, regardless of whether or not someone has a disability, have great significance.

[Salsa Gum Tape]

"Salsa Gum Tape" is a rock band formed by musician Tetsuya Kashiwa and people with intellectual disabilities.

I've been working at welfare facilities in the prefecture for 26 years.
The energy that people with intellectual disabilities can generate as entertainers, singing, playing instruments, and creating excitement, is incredible.
In "Wonderful World," created by Kashiwa in response to the "Tsukui Yamayuri-en" incident, anger and hope swirl and explode.
At Salsa Gum Tape's live performance this January, members of Dream Project were invited, and we sang this song together. The stage and the audience became one, and it turned into a huge sing-along.
"I was born to be happy! I love being alive!"
The sight of the members with intellectual disabilities shouting from the bottom of their hearts must have left a lasting impression on everyone in the audience.

All live performances were canceled due to the COVID-19 pandemic. However, they finally performed live again in November at an online event without an audience.
Furthermore, Kashiwa also created a new song, "Aitai!" (I Want to See You!), with the hope of connecting the hearts of people who cannot meet during the COVID-19 pandemic.
"We rock and roll every day simply because it's fun. And if that fun can spread to others and be shared, it becomes even more fun. The most peaceful sharing in the world!!"
In other words, just as Shiwa-san's message says, it embodies the rock and roll spirit of surviving any situation.

While many of these groups are putting on powerful performances that break through the sense of stagnation in society, there are of course many other groups that are also working with strong convictions.

■ Overseas Information

Finally, a little bit of information from overseas.
While it's not exactly in the performing arts, in other countries, many people with Down syndrome have been active in television and film for over 20 years.

In 1996, Pascal Duquenne, an actor with Down syndrome, was cast as one of the two lead actors in the film "The Eighth Day," and achieved the remarkable feat of winning the Best Actor award at the Cannes International Film Festival.
It was released in Japan in 1997, and watching this movie gave me the courage to raise my child with Down syndrome.

Lauren Potter, who has Down syndrome, plays the role of Becky in the hugely popular American drama "Glee." Some of you may be familiar with it, as it was broadcast on NHK E Tele in 2012. It's a coming-of-age drama with songs and dances set in a rural high school, about underachieving students who get into all sorts of trouble. Becky appears as a member of the cheerleading squad. Her classmates and teachers accept her for who she is, despite having Down syndrome. I was surprised and impressed by this American culture of treating her naturally as just another student, without any special treatment, and I admired her just as much as I admired her acting skills, which are on par with the other actors.

*Reference: Trailer for the drama series 'Glee'

And now, the film "Chocolate Doughnuts" is attracting attention. Released in 2014, this film, which moved many to tears with its portrayal of Rudy and Paul fighting against societal prejudice while trying to live life on their own terms, features Isaac Leyva, an actor with Down syndrome, who plays the role of Marco.

*Reference: Trailer for the movie "Chocolate Doughnuts"

In December 2020, "Chocolate Doughnuts" was staged in Japan as a play directed by Amon Miyamoto and starring Noriyuki Higashiyama. A boy with Down syndrome actually appeared in the play as Marco.

The fact that many people with intellectual disabilities appear on television and in movies overseas is largely due to the existence of acting schools and production companies. In Los Angeles, there is an entertainment production company for people with intellectual disabilities, and I have had the opportunity to visit it. Many people with intellectual disabilities appear on television and in movies through it. In Japan, an actor with Down syndrome appeared in the 300th anniversary episode of the popular medical drama "ER" in a significant role as Peter Fonda's son.

Furthermore, women with Down syndrome are active as models overseas.
In June 2020, Gucci, a leading luxury brand in the global fashion world, hired British model Ellie Goldstein for its advertisement in Italian Vogue.
In October, the global skincare brand Obagi announced that it would be using Grace Strobel as its model.

In recent years, many women with Down syndrome have appeared on major stages as models. This suggests that society is moving towards "individualized beauty that values diversity."

In Japan, former Paris Fashion Week model Mariko Takagi is working to train models with intellectual disabilities. The day when a Japanese model with Down syndrome takes to the world stage may not be far off.

■In conclusion

My encounter with the film "The Eighth Day" sparked my interest in Down syndrome and theater, and for over 20 years I have believed in and been involved in activities that showcase the potential of people with intellectual disabilities in acting, singing, and dancing.
While there are many other people doing wonderful work, this may seem presumptuous, but I wrote this in the hope that as many people as possible would become interested in their performances.
In preparation for next year's Olympic and Paralympic Games, and as a legacy, I hope that performing arts for people with disabilities, not just intellectual disabilities, will take root in Japan.
"Because I want to see their performance."
"Because their unique personalities are fun."
"Because it's interesting."
With that motivation in mind, I sincerely hope that more ordinary people will want to attend plays, concerts, and dance performances by people with intellectual disabilities, and that we will see a society where these events are filled to capacity.

It's a shame not to know about it!

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