“Raising Zuly” is a character-driven movie about a little girl defying many stereotypes and a mother intent on raising an independent child. This intimate documentary chronicles the journey of renowned French tap dancer Roxane Butterfly and her daughter Zuly who has Down syndrome. “Raising Zuly” follows Zuly as she grows from childhood through adolescence while Roxane advocates for a meaningful inclusion in a society that doesn’t always welcome those who are different.
A long time New York resident, multi-award-winning French tap dancer Roxane Butterfly has toured the world teaching and performing tap dance for over 20 years. “I was a nomad. My dance was my home.” In 2009, Roxane became pregnant while on tour in Barcelona, so she decided to remain. A month after birth, her daughter Zuly was officially diagnosed with Down syndrome. “I didn’t really know at the time where the laws and support systems for education or medical care were going to be the best. France, Spain or America?” Roxane wondered. Convinced it would be best for Zuly, Roxane relocated from New York to Barcelona. The low cost of living, the slow pace of life and the Spaniards’ general acceptance of people with disabilities made Spain seem more welcoming. Unlike France where many of her friends were worried or felt sorry for Roxane, in Spain “there are no degrading glances, no sustained curiosity”. Inclusion in education is the norm in Barcelona, so Zuly was able to attend the neighborhood school like everyone else and participate in all the activities with children in her grade. She also attended speech therapy sessions and joined a small group of children with Down syndrome who met weekly with a teacher trained to help them reinforce social and academic skills.
Unable to make ends meet in Spain, Roxane relocated once again and in 2017 she returned to her native France. But as a result of an academic assessment, Zuly, now eight years old, was reassigned from second grade to kindergarten. Furthermore her school day was shortened to three hours instead of the full day for the rest of her classmates. Although required by law, no one was assigned to help Zuly in class. Appalled Roxane sent a letter to French President Emmanuel Macron, hoping to bring awareness of the situation her daughter shares with thousands of other families with disabled children in France. To her surprise, President Macron’s office responded reassuring her that the matter was taken seriously. The letter reiterated that “the reception at school of children with trisomy 21 a.k.a Down syndrome must meet the requirements of all children”. Encourage with this news, Roxane has registered Zuly to a new school offering ULIS, a French program for special education where Zuly follows a tailored curriculum.
“Raising Zuly” is a coming of age story about love and perseverance. It is a story about a mother’s fight for her daughter’s right to be not just accepted but included in a meaningful way. “Raising Zuly” is not a French story, a European or an American story. It is a universal story that aims to change the conversation surrounding Down syndrome.