インタビュー
橋渡しインタビュー
Interview: A YouTube Channel of Love by Konoha San -Transcending Disability-
2025年2月2日 | 2025年2月2日更新
※この記事は橋渡しインタビューから「このはさんが届ける愛のユーチューブ 障害を越えて」を英訳したものです。日本語の原文は上記のリンクより読んで頂けます。
「このらぶチャンネル」（Kono love channel）is a YouTube channel streamed by one household in Aichi prefecture. It was begun back in January 2022, raising its subscribers to over 60,000. In the channel, a 20-year-old Konoha San with an innate disability and her mother (47) are introducing their daily, private life openly as it is. As a student who watched their video commented, “Watching this encouraged me to hang in there and go to school.“, it is cheering on and inspiring many viewers. What is their daily life like?
Daughter who grows more slowly than many others
Konoha San was born with “Cornelia de Lange Syndrome (CdLS)”, which is a congenital disorder occurring to one out of 10,000 to 30,000 people. Limb deformity, hearing loss, intestinal obstruction, excessive growth of hair, and developmental delay are among the conditions. She is around 130 centimeters in height and petite, traveling in a wheelchair while outside.
On weekdays, she commutes to a living care welfare service facility for the disabled where the assisting staff teaches how to do light work while she spends her free time drawing pictures and listening to music.
Conversations with her family are usually through gestures. When she has something to communicate, she voluntarily taps on the arm of her parents, and appeals to them to request what she wants them to do.
Recently, she seems to have entered a period of puberty. Since communication difficulties
make it hard for her to convey her thoughts well, she throws tantrums and screams, unable to inhibit emotions from the stress.
When she is distressed, she spontaneously runs to her mother and asks for hugs. Her mother gently hugs her. Conversely, there are days when she leaves her mother saying “Bye-bye” and grapples with herself alone in her room.
On the other hand, she has gradually come to understand more things. She started giving
looks at「言語絵カード」, which are cards with drawings that show certain objects, actions, and emotions to facilitate communication, even though she had not taken interest in them before. The number of times when she tries to communicate her feelings by pointing at cards that illustrate “I want to drink (some beverage)” and “I want seconds” has increased.
Started YouTube during Covid-19 pandemic
It was during the Covid-19 pandemic when her mother started the YouTube channel. “I want to cheer up and send encouragement to families troubled by the same disease that my daughter has”. This is because she experienced reading blogs by parents whose children also have the same disorder and feeling like she was saved herself.
The family has uploaded more than 250 videos so far. The filming is once a week. Her father films videos while her mother edits them. The couple divides roles and captures their daughter’s daily scenes.
She is not always in good condition. Sometimes, she throws objects on the spot and starts harming herself, such as hitting herself on the head. Her mother tries to stop her and repeats, “Kono Chan, the head is important.”, but it cannot be easily stopped.
In a video where Kono San went to the facility for the first time and came back home happily, she was relieved from tension, making sounds as if she were growling. Her mother, seeing her daughter’s facial expression, sweetly praised her, “Well done” in a way that comforts even the viewers.
The popularity of the videos lies not only in Konoha San but may be influenced by the way and the tone of voice in which her mother talks to her. Also, there are many useful and helpful contents about tips for childrearing and couple relationship, regardless of disability.
Nevertheless, the mother let out, “How to continue (the YouTube activity) as my daughter grows up is what I am concerned about”.
Many of the viewers support the YouTube channel with heart-warming comments like “The mother’s care and rearing are excellent”, “Konoha Chan is cute”, and so on whereas some others leave thoughtless comments. This has made them keenly feel again that various thoughts and opinions surround bringing up children with disabilities.
Wouldn’t have known if not given birth
Konoha San was born in October 2003. On the 7th month after pregnancy, she was diagnosed with “Diaphragmatic Hernia”, in which disorder there is a hole in the thoracic diaphragm. The birth was by means of caesarean section. Utilizing ExtraCorporeal Membrane Oxygenation (ECMO) and being connected to a lot of tubes, the newborn Konoha San underwent a surgery to insert an artificial thoracic diaphragm.
It was 27 days after birth when the mother held her daughter, yet Konoha San was diagnosed with Cornelia de Lange Syndrome (CdLS) on the 51th day after birth. Raising her was different from what the couple had expected before giving birth, which shocked them. However, they felt like catching at straws and kept on wishing “ Spare her even just her life” for their daughter every day.
Several years later, Konoha San got a younger brother. She looked in the face of her baby younger brother and touched his skin. Receiving advice from her friends who are also moms, her mother brought the siblings up, paying attention to balance each child.
Nowadays, Konoha San keeps a step back from her younger brother who has grown taller. He sometimes goes up to her to talk, showing that he cares for his older sister. “My big sister is my comfort”.
“My world has expanded by giving birth to a child with disability”, the mother says. “I used to care often only about myself before, but I have gotten to wonder “Is there more I can do for others” while raising my daughter. I myself was changed the most. ”
The mother who highly admires her daughter’s smiles as the best keeps taking care of her with plenty of affection.
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