The General Assembly of the United Nations decided that from the year 2011, the 21st March should be celebrated as the World Day of trisomy 21. A better day could not be chosen to celebrate people with three chromosomes 21. In France this day has special significance since this was the date when the leading French geneticist, Jerome Lejeune, who was about 30 years old at the time, discovered the origin of this syndrome and dedicated the rest of his life to investigation and above all to caring for people with Down’s Syndrome. Owing to the very nature of his discovery, Lejeune was aware that while he was advancing science, he was also putting at risk the lives of children in the womb who could end up being aborted. Presently in France 90% of pregnancies that are diagnosed with the syndrome are aborted. Lejeune died in 1994 but his legacy remains through the Foundation and Institute that bear his name, as well as this World Day when we are invited to wear non-matching socks, because of their resemblance with the chromosomes and in order to promote “difference”.
Recently different kinds of initiatives have shown French public opinion the importance of the inclusion and diversity of people with different kinds of disability, and specifically trisomy 21. Films such as “Hors norms” (The Specials), “Apprendre a t’aimer” and “De Gaulle” have brought these topics to the big screen. The first shows the heroism of people who run different associations dealing with social inclusion. The second tells a story of the transformation of a young French family whose daughter has Down’s Syndrome. The film “De Gaulle” (by Gabriel Le Bomin) gives a prominent role to the daughter of the famous general and French political leader: Anne was born with trisomy and died at the age of 20, She occupied a very special place in the heart of Charles de Gaulle. She was his strength, joy and inspiration in the many battles the founder of the Fifth Republic had to fight.
In the field of social entrepreneurship, “Cafes Joyeux” (Happy Cafes) have opened in the business districts of several European cities. This project of the entrepreneur Yann Bucaille-Lanrezac, who recently received the social entrepreneur award from the Boston Consulting Group (BCG), employs people with disabilities in typically French “cafes”. The most famous is located no less than a few yards from the Arc de Triomphe in the Champs-Elysees and was inaugurated by the French President, Emmanuel Macron, together with the minister in charge of disabled people, Sophie Cluzel. It is not by chance that Cluzel was chosen for this sensitive position. She herself is the mother of Julie (born in 1995) with Down’s Syndrome and has dedicated most of her professional life to integrating these people into society.
In the Café Joyeux located in the “most beautiful avenue in the world” we come across a champion of the inclusion of children with trisomy 21, the French artiste Cilou. One year ago, on the 21st March 2021, a very symbolic date for those with three chromosomes 21, the 27-year-old artiste set the story of a boy, Louis, to music and dance, from when he was in his mother’s womb until he started working in a Café Joyeux.
Our conversation is continually enlivened by the music, dance and general atmosphere of the employees working here. The presence of Cilou does not dampen the enthusiasm that vibrates in this locale on the Champs-Elysees. Our dialogue will be happily “interrupted” many times by two young professional guards at the Café.
How did you come up with the idea of composing a song and a video on this topic?
- During the lockdown I wanted to compose a song about joy. As we all know from experience those months were very hard. I like my songs to transmit values on the lives of real people. The idea of trisomy came up the year 2021 started and made me think of people who have three chromosomes 21. In present-day society, and I find it very positive, difference and diversity are often celebrated because we are all distinct from one another.
- Nonetheless, we often tend to be exactly like the others and erase the differences, to not be ourselves so as to be like the others or adapt ourselves to what we think society wants us to be.
- The natural goodness, the difference and the happiness of people with Down’s Syndrome helps us to be ourselves in the same way they are completely themselves, without any pretense or hiding behind a mask. They have a spontaneous, infectious joy; it’s something everyone can see in them. My song speaks of this joy in being alive, in being different. Vive la difference!
- Who is Louis, the boy of the song?
When this idea of composing a song on disability occurred to me, I started looking on Instagram for stories of families with children with trisomy 21. I didn’t want my song to be theoretical, but something real and authentic based on a true story. In my immediate circle I didn’t know any children with this disability. That is how I found out all about Louis, le super heros. “Louis the super hero”. In it this family from Brittany (western France) tells the story of little Louis. I liked it very much; I contacted them and they agreed to my idea enthusiastically. Today he is five and a half years old. In the song I put myself in his place and speak in the first person: when I was in my mother’s womb, I dreamt about my life, and carried with me a well-guarded secret. When I was born, I describe the astonishment of my parents, which is what many families experience in such cases. And the main verse tells us of joy, that I am happy, that I don’t want to trouble anyone, just that I am different, and I want to be loved.
He says his secret is his extra chromosome, it is a “super power”, to make the world more beautiful. He also speaks about his family, his big brother and his parents and the difficulties, and also the joys, but that, in short, everyone surrenders to his big heart and immense affection. He also speaks of the beauty of being weak and helpless, and of rejecting conformism. He says that when he grows up, his parents will be concerned about his independence and integrating into society. At that moment we show a young man going to work in a Café Joyeux, in Rennes, in Brittany, where there is neither fear nor prejudice, but the pride of being different and competent too. The song ends with ideas which seem to me to be the most important: I don’t want to cause trouble; I only want to love; life is a matter of chance. Vive la difference! In the video we see members of his family and the places where he lives, even the local mayor is featured.
From where do you get your artistic vocation and your commitment to this great cause?
When I was young, I went to the conservatoire: music and art have always played a great part in my life. I studied business administration. After finishing my studies, I went to Indonesia to do social work and taught guitar to kids neglected by society. We composed a song and made a video about them and several more that people liked. On my return to France, I entered the field of marketing in a big French company. I liked it but felt I could put together all my skills and my wanting to have social impact into something more artistic; this is how Cilou came into existence! My songs and videos are usually about deeper human problems, such as people going through difficult times, like losing a mother, doubts about one’s place in the world, different kinds of encounters, etc.
Humanitarian trips like mine can be a transforming experience because they help you to see the world differently. In my case, people with mental disability have always been present in my life because my parents used to take us once a month to play with such people and look after them. As a student, in the north of France I used to take part in an initiative that organized plays and musicals for disabled young people.
Finally, I think that integrating these people and respecting them is a very important and positive challenge. But it is something that involves everyone and is for the common good because we are all different, we are all weak and dependent in some way, and long for respect and a place in the world.